Handbook of Social Inclusion: Research and Practices in Health and Social Sciences [1 ed.] 9783030895938, 9783030895945, 9783030895952

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Pranee Liamputtong Editor

Handbook of Social Inclusion Research and Practices in Health and Social Sciences

Handbook of Social Inclusion

Pranee Liamputtong Editor

Handbook of Social Inclusion Research and Practices in Health and Social Sciences

With 133 Figures and 49 Tables

Editor Pranee Liamputtong College of Health Sciences VinUniversity Hanoi, Vietnam

ISBN 978 3 030 89593 8 ISBN 978 3 030 89594 5 (eBook) ISBN 978 3 030 89595 2 (print and electronic bundle) https://doi.org/10.1007/978 3 030 89594 5 © Springer Nature Switzerland AG 2022 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

In loving memory of my younger daughter, Emma Inturatana Rice, who will forever be in my heart

Preface

The focus of this Handbook is on social inclusion in health and social care. Social inclusion stems from the ideal of an inclusive society where each individual can feel valued, differences between individuals are respected, the needs of each person are met, and everyone living with dignity is “the norm.” Social inclusion can explain why some individuals are situated at the center of society or its margins, as well as the consequences of the social layer in society. Social inclusion refers to “a multifaceted construct” that embraces both a social and a physical state that leads to experience across a spectrum of inclusion/exclusion. At the macro level, social inclusion is linked to access to affordable education, equal employment opportunity and its legislation, as well as gender and cultural norms. At the micro levels, social inclusion/exclusion is distinct from, but highly associated with, poverty, as well as occupational status, income, and social networks relating to gender, ethnicity/race, and religion. Social inclusion has also been perceived as a health determinant, which sits alongside economic position, housing, and education. It is a crucial component of quality of life for many individuals because it increases their sense of belonging and allows them to become contributing members of society. It has been suggested that social inclusion enhances self-esteem, confidence, mental health, independence, and decision-making capacity, which results in better well-being of many people who are located in marginal positions in the society. Closely related to the concept of social inclusion is social exclusion. Social exclusion refers to the process of marginalizing individuals or groups and excluding them from full participation in social, economic, and political activities. Social exclusion is marked by unequal access to capabilities, rights, and resources. It engages at the individual, household, community, nation, and global level. Social exclusion renders some individuals or groups socially vulnerable. Thus, these individuals or communities are unable to prevent negative situations that impact their lives. Several factors work to preclude some individuals and groups from access to and use of health and social services, and from taking part in economic activities and policy capacities. Social factors such as gender, social class, ethnicity, caste, indigenous origin, and religion, diseases such as tuberculosis and HIV/AIDS, and migration and displacement status and disability are some of the marks which people are made to exclude.

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Preface

The repercussions of social exclusion are marked. Often, it renders excluded individuals and groups invisible and voiceless in the society in which they reside. The consequences of social exclusion also lead to poverty, low social status, low human capital endowments, restricted access to services and employment, and low social participation of those who are excluded. According to the World Health Organization, social exclusion is one of the main social determinants of health. Evidence of its impact on health and well-being is copious. Research has revealed that individuals who are socially disconnected from others have between two and five times the risk of dying from all causes, compared to people who have strong ties with family, friends, and community. Those who receive less social and emotional support are more likely to experience more depression. As the reader will see in this Handbook, certain individuals and groups are often socially excluded from mainstream society. These include homeless persons, inmates, drug users, and sex workers. They have considerably higher rates of disease, injury, and premature death than the general population. Ethnic minorities have often been excluded through covert and overt discrimination in access, policies, or regulations. Tribal and indigenous peoples hold lower social status and have limited voice and poor health outcomes. Refugees are often sexually abused and thus their human rights are violated. People living with disabilities are subjected to social (and even familial) prejudice, stigma, and discrimination. Recent research has revealed that stigma experienced by people living with epilepsy (PWE) contributes to a decrease in social contact and social capital, and lower quality of life, but increased levels of psychopathology. It has been argued that addressing the dilemma of social exclusion is a moral and ethical priority around the globe. The reduction of social exclusion can be achieved by social inclusion, which can be planned. There are some markers of inclusion to benchmark progress. These include freedom from fear, freedom from stigmatization, availability of resources, and access to information, health, and social care. There are programs and interventions that can enhance social inclusion in disadvantaged groups. These are discussed in this Handbook. Methodologically, to promote social inclusion and reduce social exclusion, inclu sive research methodologies must be embraced. The term inclusive research was coined by Walmsley and Johnson in 2003 and used prominently in the field of learning disability research. Walmsley and Johnson use the term to embrace various research approaches which have traditionally been termed “participatory,” “action,” or “emancipatory.” Inclusive research embraces typical terrain with qualitative research, particularly the concern with grounding research in the perceptions and experiences of research participants. The term inclusive research can be adopted across disciplines and research fields within the paradigm of social inclusion. Hence, in this Handbook, research and examples that are perceived as inclusive research methods will be included. The Handbook covers a wide range of issues pertaining to the social inclusion paradigm. These include the theoretical frameworks that social inclusion can be situated within, research methodologies and ethical consideration, research methods that enhance social inclusion (participatory action research and inclusive research

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methods), issues and research that promote social inclusion in different communities/individuals, and programs and interventions that would lead to more social inclusion in society. The aims and scope of the book are to provide discussions about (1) social inclusion and social exclusion in different societies; (2) theories that are linked to social inclusion and exclusion; (3) discussions about issues and research with diverse groups of vulnerable and marginalized individuals and communities; (4) inclusive research methods that promote social inclusion of vulnerable and marginalized groups of people; (5) research methodologies that enhance social inclusion; and (6) discussions regarding programs and interventions that can lead to more social inclusion of vulnerable and marginalized people. The Handbook is divided into seven sections to cover the field of social inclusion comprehensively. Each section is dedicated to a particular perspective relating to social inclusion as indicated in the points given above. The reader or user of this Handbook will learn about concepts of social inclusion/exclusion and theories relating to social inclusion/exclusion. The reader will also learn about research methodologies and programs/interventions that can enhance social inclusion in different population groups. As examples from the research are included in this Handbook, the reader will be able to see the real-life situations that can promote social inclusion in different groups that they can adopt in their own work. A good understanding of matters that can include or exclude people in the society may lead to sensitive health and social care for vulnerable and marginalized groups that will ultimately lead to the attempt at “no one will be left behind” in society. In bringing this Handbook to life, I owe my sincere gratitude to many people. First, I would like to express my thanks to all contributors, many of whom worked hard to deliver their chapters within the time frame that I set. I thank Janet Kim, Mokshika Gaur, Tina Shelton, Divya Nithyanandam, and Shobeya Sweetlin James of Springer who helped to bring it to fruition. I thank the reviewers who kindly agreed to review a number of chapters in the Handbook. I greatly appreciate their assistance. This book is dedicated to my younger daughter, Emma Inturatana Rice, who physically left us behind in late 2018, but is still present in our lives and our heart. I forever love you, my little one. Hanoi, Vietnam May 2022

Pranee Liamputtong Editor

Contents

Volume 1 1

Social Inclusion, Research, and Practices in the Health and Social Sciences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pranee Liamputtong

Part I Toward Social Inclusion in Research and Practices: Theoretical Backgrounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1

19

2

Social Inclusion and Social Determinants of Health . . . . . . . . . . . Rayner Kay Jin Tan

21

3

Social Capital and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . Pranee Liamputtong, Zoe Sanipreeya Rice, and Dusanee Suwankhong

43

4

Towards Social Inclusion, Social Justice, and Health Equity . . . . Sharon Yanicki

59

5

Social Inclusion and Human Rights . . . . . . . . . . . . . . . . . . . . . . . Ann Taket

93

6

Stigma, Discrimination, and Social Exclusion Pranee Liamputtong and Zoe Sanipreeya Rice

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113

7

Cultural Humility and Social Inclusion Vivian Chávez

....................

129

8

Social Inclusion and Cultural Competence . . . . . . . . . . . . . . . . . . Tinashe Dune, Robyn Williams, Kim McLeod, Rocco Cavaleri, and Alex Workman

145

9

The Capabilities Approach and Social Inclusion . . . . . . . . . . . . . Christopher A. Riddle

169 xi

xii

10

Contents

Understanding and Advancing Occupational Justice and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Gail E. Whiteford, Tracey Parnell, Lily Ramsden, Melissa Nott, and Suzanne Vine-Daher

181

11

The Empathy Framework and Social Inclusion . . . . . . . . . . . . . . Eric Leake

211

12

Abundance, Resilience and Trust . . . . . . . . . . . . . . . . . . . . . . . . . Derek Cook

227

13

Cultural Safety and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . Pauline B. Thompson

251

14

Digital Inclusion Andy Nguyen

......................................

265

15

Co-research with People with Mental Health Challenges . . . . . . . Rebecca Spies, Priscilla Ennals, Rebecca Egan, Philippa Hemus, Kathryn Droppert, Michael Tidhar, Magenta Simmons, Sarah Bendall, Tom Wood, and Kate Lessing

281

Part II Social Inclusion: Methodological and Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

309

16

The Messy Realities of Inclusive Research . . . . . . . . . . . . . . . . . . Alan Armstrong, Anne Collis, and Jan Walmsley

311

17

Qualitative Inquiry and Inclusive Research . . . . . . . . . . . . . . . . . Pranee Liamputtong and Zoe Sanipreeya Rice

329

18

Socially Inclusive Foundations of Statistics Dan J. Spitzner

.................

349

19

The Challenges of Defining and Measuring Social Inclusion . . . . Reinie Cordier and Robyn Martin

373

20

Mixed Methods Research and Social Inclusion Cara Meixner and Dan J. Spitzner

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395

21

Arts and Mixed Methods Research for Social Inclusion Mandy M. Archibald

.......

415

22

Social Inclusion Through Trauma- and Violence-Informed Research: A Focus on Survivors of Violence . . . . . . . . . . . . . . . . Dianne Lalonde, Robert Nonomura, Jassamine Tabibi, Linda Baker, and Marika Morris

23

Researchers with an Intellectual Disability . . . . . . . . . . . . . . . . . . Brigit Mirfin-Veitch, Patsie Frawley, and Paul Milner

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24

Decolonizing Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Wendy Somerville, Bethaney Turner, and Kerrianne Markulin

475

25

Participatory Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pranee Liamputtong and Zoe Sanipreeya Rice

493

26

Using Participatory Arts-Based Approaches to Promote Inclusive Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lee-Ann Fenge

511

27

Power, Authority, and Voice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Elaine C. Wiersma, Charlotte L. Clarke, and Bill Heibein

527

28

Against Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Nada DeCat and Zahra Stardust

549

29

Social Inclusion and Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . Ana M. Sobočan

575

30

Ethics and Participatory Health Research . . . . . . . . . . . . . . . . . . Barbara C. Groot and Tineke A. Abma

601

31

Designing Research Impact for Social Inclusion Catherine Flynn and Cameron Rose

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619

32

Academic Ventriloquism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sergio A. Silverio, Catherine Wilkinson, and Samantha Wilkinson

643

Volume 2 Part III Social Inclusion and Social Exclusion: Population Groups, Lived Experiences, and Issues . . . . . . . . . . . . . . . . . . . . . . .

661

33

Towards a Real Social Inclusion for Indigenous Australians . . . . Dennis Foley and Boyd Hunter

34

Social Exclusion, Stigma, and Discrimination Among Men Who Have Sex with Men in Asia . . . . . . . . . . . . . . . . . . . . . . . . . Sin How Lim, Mervyn Sim, Anne Yee, and Thomas E. Guadamuz

677

Programs and Practices to Support Community Participation of People with Intellectual Disabilities . . . . . . . . . . . . . . . . . . . . . Christine Bigby

695

35

663

36

Dementia and Social Inclusion-Exclusion . . . . . . . . . . . . . . . . . . . Ashley Carr, Simon Biggs, and Irja Haapala

729

37

Homelessness and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . Fiona Cuthill

747

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Contents

38

Social Inclusion and Immigrant Older Adults . . . . . . . . . . . . . . . Hongmei Tong, Christine A. Walsh, Nathalie Bouchard, and Daniel W. L. Lai

769

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Men’s Sheds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Reinie Cordier, Natasha Mahoney, and Nathan J. Wilson

791

40

Social Interaction and Social Inclusion in International Rural Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lisa Bourke, Mujibul Anam, Zubaidah Mohamed Shaburdin, Olivia Mitchell, and Alan Crouch

811

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The Exclusions of Imprisonment James E. Sutton

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835

42

The Social Exclusion of Child-Rearing Unwed Mothers in South Korea . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Boon Young Han, Min Ok Yang, and Ryan Gustafsson

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43

Social Exclusion and Transgender People in Spain . . . . . . . . . . . Luis Miguel García Rondón

869

44

Solitude in Older People and the Process of Social Inclusion . . . . Luis Miguel García Rondón and Luis Fernando Cedeño Astudillo

891

45

Social Inclusion and Immigrant Workers . . . . . . . . . . . . . . . . . . . Catherine K. Medina and Rebecca L. Thomas

913

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Concepts of Social Inclusion and Social Exclusion . . . . . . . . . . . . Steven Davey and Sarah Gordon

937

47

Social Exclusion and Marginalization of Mental Illness in Ghana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Magnus Mfoafo-M’Carthy and Jeff D. Grischow

953

Social Inclusion and High School Students with Vision Impairment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Glenda Jessup

969

Stigma, Discrimination, and Human Rights Violations of People Living with Mental Illness in India . . . . . . . . . . . . . . . . . . Sayani Paul and Chandrani Dasgupta

989

48

49

50

Social Exclusion Among People with Mental Health Conditions in Indonesia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1005 Chika Yamada, Youdiil Ophinni, and Hervita Diatri

Contents

Part IV Striving Toward Inclusive Research: Research Methods for Doing Research Inclusively . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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51

Focus Group Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1041 Melanie Nind, Alex Kaley, and Edward Hall

52

Diversity and Inclusion Across Gender and Geography . . . . . . . 1063 Amber J. Fletcher, Adela Tesarek Kincaid, Tara McWhinney, and Akram Kangouri

53

Researching Narrative Storytelling with Adults with Acquired Brain Injury . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1083 Kate D’Cruz, Jacinta Douglas, and Tanya Serry

54

Photo Elicitation and Drawing Methods in Research with People with Physical Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . 1099 An Nguyen and Pranee Liamputtong

55

Photo Elicitation Method and Young Refugees’ Social Participation in Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1125 Lisa Joyce and Pranee Liamputtong

56

Photo-Elicitation for Inclusive Research on Sensitive Topics . . . . 1147 Rosediani Muhamad, Dell Horey, and Pranee Liamputtong

57

Body Mapping and Youth Experiencing Psychosis . . . . . . . . . . . 1173 Priya Vaughan, Adèle de Jager, and Katherine M. Boydell

58

Exploring the Use of Body Mapping for Socially Inclusive Storytelling Among South African Women Living with Recurrent Breast Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1193 Anri Smit

59

Participatory Mapping as Research Tool . . . . . . . . . . . . . . . . . . . 1213 Hala Kurban and Pranee Liamputtong

60

Community Asset Mapping as a Method to Foster Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1239 Naiema Taliep, Samed Bulbulia, and Ghouwa Ismail

61

Aging in the Right Place . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1255 Mei Lan Fang, Judith Sixsmith, Sarah L. Canham, and Ryan Woolrych

62

Researching Older Women’s Experiences of Homelessness Through Visual and Sensory Methods . . . . . . . . . . . . . . . . . . . . . 1277 Vaska Dervisovski

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Researching Sexual Violence with Trans Women of Color in Australia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1295 Pranee Liamputtong, Kyja Noack-Lundberg, Tinashe Dune, Jane M. Ussher, Alex Hawkey, Brahmaputra Marjadi, Janette Perz, Virginia Schmied, Jessica Sekar, and Eloise Brook

64

Picturing Disaster: Participatory Photovoice Research with a Flood-Affected Indigenous Community . . . . . . . . . . . . . . . . . . . 1313 Amber J. Fletcher and Nicholas Antonini

65

Photovoice Method and Social Inclusion . . . . . . . . . . . . . . . . . . . 1331 Dusanee Suwankhong, Pranee Liamputtong, Chamnan Chinnasee, and Witthaya Hemapandha

66

Centring Participants’ Voices as Inclusive Research Practice . . . 1351 Michele Jarldorn

67

Researching Migrant Motherhood Using the Drawing Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1369 Sandra Benza and Pranee Liamputtong

68

Diary Method and Research on Breastfeeding with Working Mothers in Malaysia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1387 Zaharah Sulaiman and Pranee Liamputtong

Volume 3 Part V Inclusive Research Methodology: Participatory Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1403

69

Participatory Research and Theoretical Lenses . . . . . . . . . . . . . . 1405 Pranee Liamputtong and Zoe Sanipreeya Rice

70

Inclusive Research with LGBTIQA+ Groups . . . . . . . . . . . . . . . . 1423 Nicholas Hill and Katherine Johnson

71

Participatory Action Research: Sexual and Reproductive Health and Rights of Young Refugees and Migrants . . . . . . . . . . 1445 Tinashe Dune, Pranee Liamputtong, Syeda Zakia Hossain, Virginia Mapedzahama, Rashmi Pithavadian, Michaels Aibangbee, and Elias Mpofu

72

Youth-Led Arts-Based Participatory Action Research . . . . . . . . . 1469 Laura H. V. Wright, Laura M. Lee, Neveen Saied, and Vanessa Currie

73

Inclusive Research in an Exclusionary Setting . . . . . . . . . . . . . . . 1487 Michelle J. Bellino and Ali Adan Abdi

Contents

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Community Engagement Strategies in a Participatory Action Research Study with Farmworkers . . . . . . . . . . . . . . . . . . 1505 Maia Ingram, Andrew Gall, Lucy Murrieta, and Jill Guernsey de Zapien

75

Kuwentuhan as a Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1525 Valerie Francisco-Menchavez

76

An Inclusive Cultural-Variant Community-Based Participatory Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1547 Tammy L. Henderson

77

Conducting PAR with Sex Workers in Coimbra, Portugal Marta Graça

78

Using Participatory Action Research to Enable Capacity Building in the First Nations Health Research Workforce . . . . . . 1591 Sophie Hickey, Sarah-Jade Maidment, Kayla Heinemann, Sue Kildea, and Yvette Roe

79

Innovative Community Based Participatory Action Approach to Tackling Tobacco Health Inequities in Urban Poor Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1609 Sadia Jama and Smita Pakhalé

80

Intersecting Mixed Methods and Community-Based Participatory Action Research to Promote Patient-Centeredness in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1625 Nataliya V. Ivankova and Nancy P. Wingo

81

Toward Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1645 Barry M. W. Lee and Travis S. K. Kong

. . . . . 1571

Part VI Enhancing Social Inclusion Through Social Inclusion Programs and Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1663

82

Community Gardens and Social Connectedness Among Rural Older People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1665 Pranee Liamputtong and Erin Sanchez

83

More-Than-Human Contributions to Place-Based Social Inclusion in Community Gardens . . . . . . . . . . . . . . . . . . . . . . . . . 1681 Bethaney Turner, Jessica Abramovic, and Cathy Hope

84

Enabling Inclusive Occupational Therapy Through the Capabilities, Opportunities, Resources, and Environments (CORE) Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1699 Robert B. Pereira and Gail E. Whiteford

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Social Inclusion Program on Occupational Functioning for Forensic Service Users . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1717 Martin Fitzgerald

86

Sport-Based Interventions and Social Inclusion . . . . . . . . . . . . . . 1739 Haydn Morgan and Andrew Parker

87

Sports as Social Innovation for Social Inclusion . . . . . . . . . . . . . . 1757 Anne Bunde-Birouste, Alex Richmond, and Lynn Kemp

88

Social Inclusion and Solidarity Building Through Sport for Recently Arrived Migrants and Refugees in Australia . . . . . . . . . 1777 Brent McDonald and Ramon Spaaij

89

Sport for Development and Peace (SDP): A Proposal for Meaningful Inclusion Leading to Sustained Change . . . . . . . . . . 1793 Daniel Añorve Añorve

90

Dances of Resistance and Social Inclusion in Brazil . . . . . . . . . . . 1811 Kathleen A. Spanos

91

Music and the Social Inclusion of First Nations Children with Autism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1835 Anne Lindblom

92

Drama, Masks, and Social Inclusion for Children with a Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1849 David Roy

93

Fostering Women’s Empowerment . . . . . . . . . . . . . . . . . . . . . . . . 1863 Lisa Hodge, Romana Morda, Angela Paredes Castro, Jill Bamforth, and Anne Jones

94

Social inclusion and mHealth . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1885 Asmae Doukani

95

Addressing Health Inequities via Community Engagement . . . . . 1909 Bernadette Brady, Irena Veljanova, and Lucy Chipchase

96

RESCUR Surfing the Waves . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1937 Carmel Cefai, Valeria Cavioni, Paul Bartolo, and Celeste Simoes

97

Social Inclusion in Low-Income Communities via Community-Based Tourism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1951 Erin Flynn McKenna

98

Promoting Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1969 Sean Creaney and Stephen Case

99

Using Cultural Humility in Care Provided for LGBTQ People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1989 Maria Ruud

Contents

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100

Community-Based Participatory Research Using Community Activation and Peer Support Through Churches . . . . . . . . . . . . . 2005 Freya MacMillan, Kate A. McBride, Dorothy W. Ndwiga, Ronda Thompson, and David Simmons

101

Peer Support to Prevent and Manage Diabetes in Underserved Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2025 Freya MacMillan, Kate A. McBride, Michele Heisler, and David Simmons

102

Reconfigured Hmong Womanhood Through Work and Social Inclusion in Australian Society . . . . . . . . . . . . . . . . . . . . . . . . . . . 2045 Ma. Cristina G. Saulo

Part VII Promoting Social Inclusion: The Role of Health and Social Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

2069

103

Creative Arts Therapies as Social Inclusion Promotion . . . . . . . . 2071 Katrina Skewes McFerran, Jae Eun Song, Amanda Musicka-Williams, Ella Dumaresq, and Jennifer Bibb

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The Role of Arts Therapy on Fostering Social Inclusion in the Education System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2091 Sharon Snir and Dafna Regev

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Social Inclusion and the Role of Social Workers Sally Lee

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Social Inclusion and Medical Practitioners . . . . . . . . . . . . . . . . . . 2123 Penelope A. Abbott and Wendy C. Y. Hu

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Social Inclusion and the Role of Nurses . . . . . . . . . . . . . . . . . . . . 2141 Yvonne Parry and Nina Sivertsen

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Social Inclusion and the Role of Psychologists . . . . . . . . . . . . . . . 2157 Paul Hutchison and Emily Ewens

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Social Inclusion and the Media . . . . . . . . . . . . . . . . . . . . . . . . . . . 2175 Linda Portsmouth

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Social Inclusion and the Role of Housing . . . . . . . . . . . . . . . . . . . 2195 Omar Ben Haman, Kath Hulse, and Keith Jacobs

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Social Inclusion and the Role of the Health Care System . . . . . . . 2215 Yvonne Parry and Nina Sivertsen

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The Slow Progress to Social Inclusion in Policing . . . . . . . . . . . . 2233 Roberta Julian, Emma MacDonald, and Isabelle Bartkowiak-Théron

. . . . . . . . . . . . . 2107

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Social Inclusion, Immigration Legislation, and Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2259 Andy Jolly

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Social Inclusion and the Role of Law . . . . . . . . . . . . . . . . . . . . . . 2275 Daryl W. J. Yang

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2289

About the Editor

Pranee Liamputtong is currently a professor in behavior sciences at the College of Health Sciences, VinUniversity, Vietnam. She is also an adjunct professor at the Translation Health Research Institute (THRI) at Western Sydney University and at the School of Public Health, La Trobe University, in Australia. Previously, she held the position of Professor of Public Health at the School of Health Sciences, Western Sydney University, and Personal Chair in Public Health at the School of Public Health, La Trobe University, Australia. Pranee has also taught at the School of Sociology and Anthropology and worked as a public health research fellow at the Centre for the Study of Mothers’ and Children’s Health, La Trobe University. Pranee’s particular interests include issues related to socio-cultural influences on childbearing, childrearing, motherhood, infant feeding practices, and reproductive and sexual health. Her current research includes motherhood, HIV/AIDS, breast cancer, sexuality, and sexual violence. Pranee has published several books and a large number of papers in these areas. These include Maternity and Reproductive Health in Asian Societies (with Lenore Manderson, Harwood Academic Press, 1996); Asian Mothers, Western Birth (Ausmed Publications, 1999); Living in a New Country: Understanding Migrants’ Health (Ausmed Publications, 1999); Hmong Women and Reproduction (Bergin & Garvey, 2000); Coming of Age in South and Southeast Asia: Youth, Courtship and Sexuality (with Lenore Manderson, Curzon Press, 2002); and Health, Social Change and Communities (with Heather Gardner, Oxford University Press, 2003). Her more recent books include Reproduction, Childbearing and xxi

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About the Editor

Motherhood: A Cross Cultural Perspective (Nova Science Publishers, 2007); Childrearing and Infant Care Issues: A Cross Cultural Perspective (Nova Science Publishers, 2007); The Journey of Becoming a Mother Amongst Thai Women in Northern Thailand (Lexington Books, 2007); Population, Community, & Health Pro motion (with Sansnee Jirojwong, Oxford University Press, 2008); Infant Feeding Practices: A Cross Cultural Perspective (Springer, New York, 2011); Motherhood and Postnatal Depression: Narratives of Women and Their Partners (with Carolyn Westall, Springer, Dordrecht, The Netherlands, 2011); Health, Illness and Well Being: Perspectives and Social Deter minants (with Rebecca Fanany and Glenda Verrinder, Oxford University Press, 2012); Contemporary Socio Cultural and Political Perspectives in Thailand (Springer, 2014); Public Health: Local and Global Per spectives (Cambridge University Press, 2016, second edition in 2019); and Social Determinants of Health (Oxford University Press, 2019). Pranee was a general editor of the book series HIV/ AIDS and Cross Cultural Research. The series was published by Springer in the Netherlands between 2012 and 2020. Her two books in the series were published by Springer in 2013. These were Stigma, Discrimination and Living with HIV/AIDS and Women, Motherhood and Living with HIV/AIDS. The third one in the series is Children, Young People and Living with HIV/AIDS: A Cross Cultural Perspective, published in 2016. Pranee has also written and edited a number of research method books. Her first was Qualitative Research Methods: A Health Focus (with Douglas Ezzy, Oxford University Press, 1999); the second edition of the book is titled Qualitative Research Methods (2005); the third edition was published in 2009; the fourth edition was published in 2013; and the fifth edition was published in 2020. Pranee has also published a book on doing qualitative research online: Health Research in Cyberspace: Methodological, Prac tical and Personal Issues (Nova Science Publishers, 2006). Her other books include Researching the Vulner able: A Guide to Sensitive Research Methods (SAGE, 2007); Undertaking Sensitive Research: Managing Boundaries, Emotions and Risk (with Virginia

About the Editor

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Dickson-Swift and Erica James, Cambridge University Press, 2008); Knowing Differently: Arts Based and Col laborative Research Methods (with Jean Rumbold, Nova Science Publishers, 2008); Doing Cross Cultural Research: Ethical and Methodological Issues (Springer, 2008), Performing Qualitative Cross Cultural Research (Cambridge University Press, 2010); Research Methods in Health: Foundations for Evidence Based Practice (Oxford University Press, 2010, 2013, 2017); Focus Group Methodology: Principles and Practice (SAGE, 2011, online version in 2016); and Using Participatory Qualitative Research Methodologies in Health (with Gina Higginbottom, SAGE, 2015). In 2019, her Hand book of Research Methods in Health Social Sciences was published by Springer. She is now working on a number of books including Research Methods in Health, 4th edn (Oxford University Press, due in late 2021), Qualitative Research Methods in the Social Sci ences (Edward Elgar, forthcoming), Handbook of Qual itative Cross Cultural Research: A Social Science Perspective (Edward Elgar, forthcoming), and Hand book of Social Science in Global Public Health (Springer, forthcoming).

About the Contributors

Penelope Abbott is an associate professor and a primary care physician with particular expertise in health care for people involved in the criminal justice system and Indigenous health. She is affiliated with the Department of General Practice, Western Sydney University. Ali Adan Abdi is studying at Jomo Kenyatta University of Agriculture and Technology in Nairobi, Kenya. He was awarded the DAFI (Albert Einstein German Academic Refugee Initiative) scholarship in 2017. Born in Somalia, Ali sought asylum in Kenya in 2011. After completing his schooling in exile, he worked as an Islamic Religious Education teacher at Kakuma Refugee Camp. He co-facilitated the Kakuma Youth Research Group from 2016 to 2017. Jessica Abramovic holds a Master of International Development. Her research explores the capacities of digital storytelling to transform and empower disadvantaged communities. Michaels Aibangbee is a PhD candidate at the School of Health Sciences, Western Sydney University. His thesis focuses on understanding the perspectives and experiences of young migrants and refugees’ sexual reproductive health and rights. As a psychotherapist, Michaels focuses on engaging stakeholders, advocating, navigating, and bridging existing systems to support the holistic well-being of the culturally and linguistically diverse (CALD) population. Mujibul Anam is a research fellow in Culture and Rural Health at the Department of Rural Health at the University of Melbourne. Mujibul is also a professor (on leave) in the Department of Anthropology at Jahangirnagar University, Bangladesh. His areas of interest are rural health anthropology, social justice, and the environment.

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About the Contributors

Daniel Añorve Añorve holds a BA in International Relations from Universidad Nacional Autónoma de México (UNAM). He has an MA in Political Science from York University in Canada, and a PhD in International Relations from UNAM (Mexico). He is currently a full-time professor in the Department of Political and Government Studies at Universidad de Guanajuato. His research interests relate to sport and globalization, as well as to geopolitics and paradiplomacy. Nicholas Antonini is an honors student in the Department of Sociology and Social Studies at the University of Regina. Mandy Archibald is currently an assistant professor at the College of Nursing, University of Manitoba, and a scientist with the Child Health Research Institute of Manitoba. She is a nurse-researcher, interdisciplinary artist, and research methodologist working at the interface of technology, arts, and collaborative mixed methods research who is interested in how diverse knowledge systems interact within research teams, between methodologies, and within chronic illness contexts. Alan Armstrong was a co-founder of Barod, a cooperative that started in 2013, employing people with intellectual disabilities. Alan co-authored a peer-reviewed paper published in Disability and Society in 2019. Before working for Barod, Alan was chair of Carmarthenshire People First and represented people with learning disabilities at national meetings. Alan passed away shortly after writing this chapter. He would be pleased to have this chapter to be remembered by. Luis Fernando Cedeño Astudillo currently works as a research professor at the Universidad Metropolitana del Ecuador (UMET) and is director of the project “Social education for the prevention of gender violence” at the Faculty of Law. He has worked with transgender groups, inmates, women victims of violence, and adolescents at risk. Previously he was a professor at Universidad de Guayaquil and Universidad Laica del Ecuador. Linda Baker is a psychologist and Adjunct Faculty member at the Faculty of Education at Western University and is Learning Director at the Centre for Research and Education on Violence Against Women & Children in London, Ontario, Canada. Linda has co-authored numerous resources related to gender-based violence at different life stages and across the life course. Jill Bamforth is Academic Director for Work Integrated Learning at the School of Business, Law and Entrepreneurship at Swinburne University. She is committed to researching, developing, and supporting best practice education and work-integrated learning pathways that build economic inclusion, increase resilience, and improve work readiness, particularly for those who are marginalized. She publishes journal

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articles examining how people and technology come together to transform industries and shape lives and communities. Isabelle Bartkowiak-Théron is a senior researcher at the Tasmanian Institute of Law Enforcement Studies. She focuses on issues of vulnerability, police education, and law enforcement and public health research. She sits on the Board of Directors of the Global Law Enforcement and Public Health Association, where she heads up the Education Special Interest Group. She also sits on various international journal editorial committees, and on international and Australian charitable, professional, and research governance boards. Paul A. Bartolo is a professor in the Department of Psychology, Faculty for Social Wellbeing, University of Malta, where he is Coordinator of the Master of Psychology training of psychologists. He has coordinated national and European groups in inclusive education and is currently advisor to the project on Inclusive Early Childhood Education of the European Agency for Special Needs and Inclusive Education. Michelle J. Bellino is an assistant professor at the University of Michigan School of Education (US). Her research centers on education and youth civic development, with particular attention to contexts impacted by armed conflict and forced displacement. She has been recognized as a Peace Scholar by the United States Institute of Peace and a postdoctoral fellow of the Spencer Foundation. Sarah Bendall is a clinical psychologist and associate professor at Orygen and the University of Melbourne. She researches trauma-informed care in youth mental health and the development of new psychological therapies for recovery in youth mental health. She is the author of over 80 research papers and three psychological treatment manuals. Sandra Benza is a registered nurse working in Melbourne, Australia. She obtained her Master of Public Health from La Trobe University under the supervision of Pranee Liamputtong. Her research has involved the experience of motherhood among Zimbabwean migrant mothers. She has used the drawing method in combination with an in-depth interviewing method in her research. She has published several journal articles arising out of her minor thesis. Jennifer Bibb is a senior music therapist and eating disorders clinician at St Vincent’s Hospital in Melbourne and a research fellow at the University of Melbourne. Her research focuses on the role of music therapy in improving treatment outcomes for people with eating disorders, as well as the use of music during mental health recovery.

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About the Contributors

Christine Bigby is Professor and Director of the Living with Disability Research Centre at La Trobe University, Australia. She has a long track record of working in partnership with disability support organizations investigating the effectiveness of social programs and policies aiming to support the social inclusion of adults and older people with intellectual disabilities. Chris is a member of the College of Experts of the Australian Research Council and the founding editor of Research and Practice in Intellectual and Developmental Disabilities. Simon Biggs is Honorary Professor at the School of Social and Political Sciences, University of Melbourne. He has been Director of the Institute of Gerontology at Kings College London and a founding member of the World Economic Forum’s Global Agenda Council on Ageing. His interests include intergenerational relations, older workers, elder abuse, social aspects of dementia, and social policy. Lisa Bourke is a professor and Director of the Department of Rural Health at the University of Melbourne. Lisa has worked in rural health for over 20 years and is passionate about inclusion in rural communities. Katherine M. Boydell is Head of the AKT (arts-based knowledge translation) Lab at the Black Dog Institute and Director of Knowledge Translation, Sydney Partnership for Health Education Research and Enterprise. Her participatory, collaborative program of research uses the arts in the research creation and dissemination process. She uses installation art as a knowledge translation strategy to share empirical research findings to a wide range of audiences, which has resulted in increased mental health literacy and decreased stigma. Bernadette Brady is a clinical specialist physiotherapist with South West Sydney Local Health District with expertise in musculoskeletal and chronic pain physiotherapy. She holds conjoint roles with Western Sydney University and the University of Sydney and is undertaking a research fellowship with SPHERE focused on improving the experience of pain management and rehabilitation for patients from CALD communities across South Western Sydney Local Health District. Eloise Brook is Media Manager at the Gender Centre Inc. She also works as a researcher, across gender, political science, media, and communication. Her main focus as an academic has been the intersection of these various areas in transgender and gender diverse lives. Samed Bulbulia is a community intervention coordinator and public health researcher. His research is focused on the promotion and research of indigenous strategies for safe and healthy communities. He is also involved in child traffic safety research.

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Anne Bunde-Birouste is the convener of the Health Promotion Program at the School of Public Health and Community Medicine, at the University of New South Wales. She is recognized as a global expert in sport for social change, and has received a number of significant awards in recognition of her significant role in the use of sport for promoting positive social change and supporting positive youth development. Sarah Canham is an associate professor with a joint appointment at the College of Social Work and the College of Architecture and Planning at the University of Utah. Her community-based research engages with a broad network of providers, clinicians, and persons with lived experience to examine homelessness, housing security, health and social service delivery, and aging. Using a social justice lens, her work seeks solutions to systemic barriers to aging well in various environments. Ashley Carr was a research fellow at the School of Social and Political Science, University of Melbourne, where he worked on two national dementia studies – dementia in the public domain and the role of regulation in dementia care – as part of the Cognitive Decline Partnership Centre, from 2015 to 2019. He currently works at the Victorian Electoral Commission, researching voter trends and behaviors, with an interest in the inclusion of underrepresented groups in the electoral process. Stephen Case is Professor and Head of Social and Policy Studies at Loughborough University, UK. His research expertise lies in the field of youth justice, where he is particularly focused on “Child First,” rights-compliant, and anti-risk responses to children who offend as a means of promoting positive outcomes and behaviors. He has conducted funded research for the Home Office, Youth Justice Board, Nuffield Foundation, and Leverhulme Trust, and published over 60 peer-reviewed articles in the field of youth justice. Angela Paredes Castro is a PhD candidate at the Institute for Health and Sport at Victoria University, Melbourne, Australia. Her research interests are issues related to the social, psychological, and financial well-being of women, migrant communities, and socio-economically disadvantaged groups. Rocco Cavaleri is an academic and researcher in the Physiotherapy Department, Western Sydney University. He is passionate about investigating the mechanisms underlying chronic disease and developing safe and effective treatment methods. He probes the nervous system using non-invasive brain stimulation techniques, while also appreciating the broader psychosocial determinants of health and well-being. He is an advocate for evidence-based practice and seeks to actively support the translation of research into clinical practice.

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About the Contributors

Valeria Cavioni is a licensed psychologist, psychotherapist, and postdoctoral researcher in the Department of Human Sciences for Education at the University of Milano-Bicocca, Italy. Her main areas of research include the development, implementation, and evaluation of school-based programs on mental health, resilience, social and emotional learning, and school readiness. Valeria is Chair of the European Network for Social and Emotional Competence. Carmel Cefai is Founding Director of the Centre for Resilience and SocioEmotional Health and Professor in the Department of Psychology at the University of Malta. He is joint founding editor of the International Journal of Emotional Education. His research interests are focused on how to create healthy spaces which promote the resilience, well-being, and psychological well-being of children and young people. Vivian Chávez is a public health professor at San Francisco State University. She is a somatic movement educator and yoga teacher rooted in Guatemalan culture and spirituality. Her scholarship explores language, power, and privilege to create inclusive relationships fueled by love, solidarity, and awareness. She has presented her work internationally in Japan, Cuba, Peru, and Argentina, studied in India, and lectured throughout the USA. Chamnan Chinnasee is an assistant professor of Sports Science at Thaksin University, Thailand. He completed his PhD at Kasetsart University, Thailand, in 2015 on the magnitude of energy absorption and anterior cruciate ligament injury risk during single-leg landing and side step cutting. His area of expertise is biomechanics in sports. He is interested in biomechanics in Muay Thai and simulation modeling for sports injury prevention. Lucy Chipchase is a clinical dean and professor at the College of Nursing and Health Science at Flinders University. She has extensive leadership experience in the education and health care sector as well as professional services organizations. She provides leadership in relation to research as it relates to mental, emotional, and physical health and well-being, and physical activity and exercise, and is a non-executive director on the Australian Physiotherapy Council and for Healthcare Learning Solutions. Charlotte Clarke is Professor of Sociology and Executive Dean for the Faculty of Social Sciences & Health at Durham University, UK. Her research focuses on risk management and the experiences of people living with dementia. Her interest in citizenship and quality of life influences the ways in which she has sought to carry out research that concerns people with a dementia diagnosis as inclusively and democratically as possible. Charlotte has also worked at the Universities of

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Northumbria (until 2011) and Edinburgh (2011–2019) in research and academic leadership. Anne Collis is completing her PhD in Organizational Management at Bangor University looking at different ways of knowing and valuing knowledge. She is a co-founder of Barod, until recently leading their research team. She has worked for over 20 years on public involvement in policy-making and research. Derek Cook serves as Director of the Canadian Poverty Institute at Ambrose University in Calgary, Canada, and was a member of the federal Ministerial Advisory Committee on Poverty. His experience also includes community development work with marginalized populations in various settings across Canada. Reinie Cordier is a professor at Northumbria University. His main research interests lie at the intersections between health, social inclusion, and phenomena specific to different population groups. A major focus for his research is promoting the social inclusion of children with developmental disorders. Alan Crouch is a senior research fellow in the Department of Rural Health at the University of Melbourne. Alan’s current research interests include the determinants of health disadvantage in rural Victoria and globally. Vanessa Currie is Executive Director of the International Institute for Child Rights and Development. She has spent the last two decades working in children’s rights with a focus on children’s meaningful participation and partnership in their protection. Fiona Cuthill is a senior lecturer in Nursing at the School of Health in Social Science, University of Edinburgh. She has a particular research interest in genderbased violence, homelessness and refugee health. Fiona is Academic Director for the Centre for Homelessness and Inclusion Health, which is a collaboration between the University of Edinburgh and local partners in Scotland to improve the health and well-being of people who experience homelessness. Chandrani Dasgupta holds a PhD in Social Sciences and a Masters in Clinical Psychology. Her experience lies in qualitative and quantitative research with youth living with armed conflict and survivors of sex and labor trafficking. She is now based in Singapore, where she works for an NGO supporting migrant workers in non-domestic sectors. Her expertise lies in mental health research, casework, and counseling.

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About the Contributors

Steven Davey has a background in UK government policy research, with an academic background in philosophy and psychology. He has published in several subject areas, including mental health and stigma, the philosophy of emotion, and affective science. He has recently completed a PhD in psychological medicine, and is now undertaking clinical psychology training. Kate D’Cruz is an occupational therapy academic at La Trobe University and senior research fellow at the Summer Foundation, in Melbourne, Australia. She is an experienced clinician and researcher in the area of acquired brain injury rehabilitation. She has a particular interest in the lived experience of disability, narrative storytelling methods of engagement, and person-centered approaches to practice and research. Nada DeCat is an activist who has lived as an undocumented migrant most of her life and writes on racism and sex work. Her work “The Racism of Decriminalization” has been published in peer sex work activist journal Tits and Sass and her latest writing, “Aesthetic of Migrant Sex Work: Creation of White Identity and Perceived Moral Superiority,” will be published this year as part of a book about racism and the contemporary trafficking industry edited by Kamala Kempadoo and Elena Shih. Vaska Dervisovski is a doctoral candidate at Victoria University whose area of research is homelessness, older women, and the use of creative methodologies in critical social research. Vaska currently works as a Sessional Field Educator for the School of Social Work at Victoria University, and has worked in the housing and homelessness sector in the west of Melbourne for the past 12 years. Hervita Diatri is a psychiatrist associated with the Faculty of Medicine, Universitas Indonesia and the Cipto Mangunkusumo Hospital in Indonesia. She specializes in community psychiatry and is actively involved in the pasung elimination program since 2008. Jacinta Douglas is a professor and Deputy Director of the Living with Disability Research Centre at La Trobe University, Australia. She has extensive research and clinical experience in the rehabilitation of adults with acquired brain injury and has authored over 140 journal articles and 10 book chapters. Her research contribution has advanced knowledge particularly in the domains of interpersonal communication and psychosocial functioning. Asmae Doukani is a research fellow at the London School of Hygiene and Tropical Medicine (LSHTM). She has worked across a range of research projects involving the development, evaluation, and implementation of e-mental health interventions across both low- and high-income settings. She is also a PhD student at LSHTM, and

About the Contributors

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is exploring the mechanisms of positive therapeutic change, in a computerized cognitive behavioral therapy intervention. Robert Doyle is a Cadigal/Eora/Winninninni man with British admixture. He is a registered nurse and current Master of Public Health student at Translational Health Research Institute at Western Sydney University. His interests are in Indigenous health and mental health. Kathryn Droppert is a psychosocial support worker for a youth residential mental health service. She enjoys seeing the connection and comfort her therapy dog Rosie brings the young people at this service. Kat is undergoing training in clinical psychology and has previously engaged in research on topics involving resilience, emotional intelligence, academic performance, acceptance, coping strategies, and pain management. Ella Dumaresq is a dance movement therapist with practice expertise in aged care and community correctional settings. Her PhD project explored the intersections of dance/movement therapy, ethnography, embodied research methodologies, social justice, and criminalization processes. Ella teaches and researches as part of the Masters of Creative Arts Therapy program, The University of Melbourne. Tinashe Dune is an associate professor in Interprofessional Health Sciences at Western Sydney University. Her research, teaching, and practice (Clinical Psychology) focus on the experiences of marginalized populations. This includes the experiences of culturally and linguistically diverse people, those living with disabilities, aging populations, LGBTQI+ people, and Indigenous populations. Rebecca Egan is a peer researcher and undergraduate Psychology student. Her work largely focuses on increasing capacity for collaborative practices in research settings. She also has a keen interest in exploring the multifaceted relationship between trauma, mental distress, and recovery. Priscilla Ennals is an occupational therapist with a strong focus on the role of occupational engagement in mental health and well-being. She has a passion for qualitative research and participatory research methodologies. She currently manages research for a national community mental health provider, Neami National, and holds adjunct roles with La Trobe and Monash Universities in Melbourne, Australia. Emily Ewens is a postgraduate student at the School of Social Sciences at London Metropolitan University, UK. Her research interests are in mental health, psychological and social well-being, and the causes and consequences of social inclusion and exclusion.

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About the Contributors

Mei Lan Fang is a research fellow at the School of Nursing and Health Sciences at the University of Dundee, and a research associate at the Science and Technology Research Ageing Institute at Simon Fraser University. She has developed theory, methods, and practice in health-related areas of critical public health, ethnic and migration studies, environmental gerontology, aging and technology, global health promotion, and mental health and addiction. Lee-Ann Fenge is Professor of Social Care and Director of the Centre for Seldom Heard Voices at Bournemouth University. She uses participative approaches in her research to involve the voices of marginalized groups and those who are seldom heard within society. Her projects have used arts-based participatory approaches to promote engagement with the lived experience of individuals including older people, disabled youth, and homeless people. Martin Fitzgerald is a lecturer in occupational therapy at the University of Bradford, UK. He has worked as an occupational therapist in learning disabilities and mental health for the past 18 years. For the last 12 years, he has managed an occupational therapy service in a low secure hospital for patients who are detained under the Mental Health Act and who experience serious mental illnesses such as schizophrenia. Amber J. Fletcher is an associate professor of Sociology and Social Studies at the University of Regina in Canada. As a gender sociologist, Amber uses qualitative methods to examine gender and social inequality in the context of climate disasters and major changes in public policy. Her research focuses on rural, agricultural, and Indigenous communities in the Canadian Prairie region. Catherine Flynn is a senior lecturer in the Department of Social Work at Monash University whose primary teaching focuses on research methods. Her core research areas include the intersection of criminal justice and social work, international collaborations/international social work, and social work research. She has a keen interest in understanding and addressing the wider and unintended consequences of criminal justice and other policies. Dennis Foley is of Gai-mariagal and Wiradjuri descent, and is Professor of Entrepreneurship in the Faculty of Business Government and Law at the University of Canberra. He has been researching in the area of Indigenous entrepreneurship and education since 1992, and has been the recipient of numerous national and international grants and awards, including a Fulbright Fellowship and two Endeavour Fellowships.

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Valerie Francisco-Menchavez is an assistant professor in the Department of Sociology and Sexuality Studies at San Francisco State University, where she is committed to transnational examination of Filipina migrants’ lives from working as domestic workers in New York City and as caregivers in the San Francisco/Bay Area to their care work with their families left behind in Manila. Patsie Frawley is an associate professor of Disability and Inclusion Studies at the University of Waikato, New Zealand. Patsie’s research focuses on sexuality and relationship rights and prevention of violence and abuse of people with disabilities. Using inclusive research approaches with people with disabilities, Patsie works to inform theory and practice in disability and inclusion rights and advocacy. Andrew Gall has extensive experience designing and implementing assessments, research studies, and intervention programs internationally and in the USA. He has expertise in workshop facilitation and building multi-stakeholder coalitions to address an array of public health issues including health systems strengthening; nutrition and food security; reproductive, maternal, newborn, and child health; water sanitation and hygiene; and collective impact. Luis Miguel García Rondón is an associate professor at the University of Malaga, Spain. He undertook his undergraduate and postgraduate studies in Social Work and Psychology. His teaching and research experience has spanned 24 years, at several Spanish universities. He has directed doctoral theses and conducted research stays in Italy, Holland, Greece, Belgium, and Peru. Sarah Gordon leads the “World of Difference” service user academia education and research team as part of the Department of Psychological Medicine at the University of Otago Wellington, New Zealand. The education and research programs being led or co-produced by the World of Difference team are focused on ending discrimination and promoting recovery, inclusion, and respect for the human rights of people who experience mental distress. Marta Graça is a former social worker and an action researcher. She holds a PhD in Education and her work focuses on sex workers’ rights. She is interested in educational sciences and sociology, with a focus on gender studies and politics of inclusion. She works at the University of Aveiro. Jeff D. Grischow is an associate professor in the History Department, Wilfrid Laurier University, Canada. Most of his research focuses on the history and experience of disability rights in Ghana. He is currently collaborating on three projects in this area with Magnus Mfoafo-M’Carthy, funded by the Social Sciences and Humanities Research Council of Canada.

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About the Contributors

Thomas E. Guadamuz received his PhD from the Johns Hopkins University Bloomberg School of Public Health and completed postdoctoral fellowships in social and behavioral interventions, medical anthropology, and HIV research ethics. He studies the social determinants of HIV and STIs, violence, and substance use among marginalized populations in Southeast Asia, including men who have sex with men, transgender women, sex workers, and migrants. Ryan Gustafsson is an honorary fellow at the Asia Institute, University of Melbourne. He has conducted research in continental philosophy and social theory, and is currently pursuing two projects: a phenomenology of Korean transnational adoption, and a book project on Merleau-Ponty’s philosophy of nature. Edward Hall is a senior lecturer in Human Geography at the University of Dundee. He undertakes research on disability and learning disability, related to employment, social exclusion/inclusion, social care and support, and hate crimes. He adopts a qualitative and participatory methodological approach, working co-productively with disability and other organizations. Omar Ben Haman is a researcher at the University of Tasmania, Australia. He is currently drawing upon extensive fieldwork in Casablanca, Morocco, to understand how neoliberal urban policies and redevelopment projects reproduce new forms of social exclusion and deprivation in the metropolitan peripheries. He is a member of the editorial board of the Journal of Social Service Research. Boon Young Han is assistant professor at Hankuk University of Foreign Studies, Korea. She is currently pursuing her PhD in social work at Seoul National University. Her main research interests are adoption, family welfare, and women’s issues. Irja Haapala has been Senior Research Fellow at the School of Social and Political Sciences, University of Melbourne, Senior Lecturer in Food and Nutrition in teacher education at the University of Eastern Finland, and special editions Editor for Public Health Nutrition. Her interests include public health nutrition and older people, social aspects of dementia, intergenerational relations, and teacher education. Alex Hawkey is Associate Research Fellow at the Translational Health Research Institute, Western Sydney University, Australia. Her research focuses on sexual and reproductive health of women from culturally and linguistically diverse groups. She is interested in exploring methodologies that empower research participants and give voice to the marginalized. Bill Heibein was diagnosed with early-onset dementia in 2000. After a 38-year career in public accounting, he took early retirement and retreated to his farm. Bill is

About the Contributors

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involved in various research projects in conjunction with Lakehead University (in Thunder Bay) and the University of Waterloo. He is also a member of the advisory committee for the Alzheimer Society of Canada and the North West Dementia Working Group, and a past founding member of the Ontario Dementia Advisory Group. Kayla Heinemann is a Bundjalung woman from Brisbane. As a community researcher, Kayla enjoys hearing the women’s stories about their pregnancy journeys and motherhood experiences. Kayla is passionate about improving health care services for First Nations families. Michele Heisler is Professor of Internal Medicine and Public Health at the University of Michigan and Co-Director of the Michigan Center for Diabetes Translational Research. She has developed and tested multiple peer support models to improve health behaviors that were found more effective than comparison groups in improving diabetes outcomes. These include community health worker, peer coach, and reciprocal peer support models. Witthaya Hemapandha is a lecturer in Sports Science at Thaksin University, Thailand. He obtained his PhD from Burapha University, Thailand. He is interested in sport psychology and management. Witthaya has carried out several research projects among sport players and athletes in Thailand and has published several papers. Philippa Hemus has a deep passion for improving mental health care for all. She works in a public hospital in a Lived Experience role and endeavors to create a space where all services, staff, and consumers can have a trauma-informed approach and consumer voices and experiences can be centered throughout the hospital. Tammy L. Henderson is a professor at Lamar University who conducts family policy, law, and diversity research. She has received National Science Foundation grants to study older adults in the aftermath of Hurricane Katrina and the strengths, needs, and challenges of Alaska Native grandparents. Her other funded work revolves around gerontology and geriatrics, producing evidence-based programs for health and social care professionals. Sophie Hickey is an early career researcher. She currently manages a large longitudinal cohort study of First Nations mothers and children designed to provide feedback to local service providers on best practice maternity care, which has seen a profound reduction in preterm birth for women accessing the new model of care. Sophie works in a multidisciplinary team and uses institutional ethnography, participatory action research, and implementation science to improve health services for First Nations people.

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About the Contributors

Nicholas Hill is an early career researcher located in the Social and Global Studies Centre at RMIT University, Australia. He is a critical mental health and well-being scholar whose work examines the lived experience of mental health services, everyday happiness and well-being, and psychological and emotional distress. Nicholas uses participatory and creative methods to promote alternative representations of distress and contribute to the ongoing project of social justice. Lisa Hodge is a research fellow at the Institute for Health and Sport at Victoria University, Melbourne, Australia. Her primary research interests include gender and mental health and the development of research methods for investigating vulnerable population groups. Cathy Hope is Coordinator of the Play, Creativity and Culture Project at the Centre for Creative and Cultural Research at the University of Canberra. Cathy has written extensively on alternative cultures in their initial experimental phases – including film festivals, farmers’ markets, and Australian youth radio station Triple J. Dell Horey is an associate professor and academic advisor (coursework) for the College of Science, Health and Engineering at La Trobe University. She has qualifications in science and epidemiology and has a strong history in consumer participation. Her more than 50 peer-reviewed publications cover a range of methodological approaches, both qualitative and quantitative, and focus on difficult health decisions and vulnerable population groups. Syeda Zakia Hossain is an associate professor at the School of Health Sciences at the University of Sydney. She is a demographer and a health sociologist, and her research and teaching focus on reproductive health, communicable and non-communicable diseases, and disability and international health. The particular focus of her research is on migrant/refugee, CALD populations and aged and aging populations using mixed methods. Wendy C. Y. Hu trained as a primary care physician, practicing with underserved pediatric populations, refugees, and asylum seekers. She is a professor affiliated with the School of Medicine, Western Sydney University. Kath Hulse is Emeritus Professor at the Centre for Urban Transition, Swinburne University of Technology. Her primary research interest is in the housing and urban drivers and consequences of economic, social, political, and cultural change. Her recent research has focused on socio-economic and housing system change in areas such as housing wealth and inequality, socio-spatial disadvantage, the decline in home ownership and growth of the private rental sector, and sustainable housing renovations.

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Boyd Hunter works at the Centre for Social Research Methods, at the Australian National University. He is an economist who has been grappling with the issues of social inclusion and exclusion of Indigenous people for over 25 years. His main area of research and teaching involves the economic history of “The Indigenous Economy” and renewing Indigenous economies. Paul Hutchison is a principal lecturer in Psychology at the School of Social Sciences at London Metropolitan University, UK. His research interests are in issues related to group processes and intergroup relations, prejudice and discrimination, and social inclusion and exclusion. Maia Ingram is Co-Director of the Arizona Prevention Research Center at the University of Arizona College of Public Health. For over 20 years, Maia has partnered with community health workers in health centers and grassroots agencies in rural, urban, and US–Mexico border communities to develop and evaluate community health worker programs addressing health promotion, chronic disease management, mental health, hearing loss, and environmental health. Ghouwa Ismail is a registered research psychologist at the Institute for Social and Health Sciences at the University of South Africa, with a background in psychology, criminology, and public health. Her research interests include the development of measuring instruments, cross-cultural evaluation of assessment tools, and child wellbeing. She also has a keen interest in community-engaged research and participatory research methodologies. Nataliya V. Ivankova is a professor at the School of Health Professions and Nursing at the University of Alabama at Birmingham. She is an internationally recognized applied qualitative and mixed methods research methodologist with an interest in integrating mixed methods with community-based participatory and action research approaches in the context of translational research and implementation science. Keith Jacobs is Professor of Sociology at the University of Tasmania. His recent publications include Neoliberal Housing Policy: An International Perspective (Routledge, 2019), Philosophy and the City (Rowman & Littlefield Publishers, 2019) coedited with Jeff Malpas, and Housing, What Do We Know and What Should We Do About. . .? (SAGE, 2020) co-authored with Rowland Atkinson. Adèle de Jager is a clinical psychologist. Her doctoral research employed narrative inquiry to investigate experiences of recovery from hearing distressing voices. She subsequently examined the impact of attending Hearing Voices Network self-help groups on voice-hearers. At the Black Dog Institute, she contributed toward a

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research program focused on psychosis, arts-based research, and knowledge translation. Sadia Jama is a PhD candidate in Epidemiology at the Bridge Engagement Centre and at the School of Epidemiology and Public Health at the University of Ottawa. She is also a community-based researcher and data analyst at the Social Planning Council of Ottawa. Michelle Jarldorn completed her PhD at Flinders University in Adelaide, South Australia. Michelle is currently a lecturer in social work at the University of South Australia in the Justice and Society Unit. In 2019, she was awarded the Vice Chancellor’s Award for Thesis Excellence for her thesis titled Radically rethinking imprisonment: A Photovoice exploration of life in and after prison in South Australia. Glenda Jessup ’s background is in Leisure and Health (Diversional) Therapy. Her Master’s research focused on the benefits of leisure to young people with vision impairment. Her PhD focused on the social inclusion of students with vision impairment. Glenda now works as a researcher at the University of Sydney and as an app developer. Katherine Johnson is a professor of Psychology and Associate Dean, Research and Innovation in the social sciences at RMIT University, Australia. Her research is in LGBTQI+ mental health and participatory and visual research methods. Current projects focus on early interventions for LGBTQI+ youth mental health (National Institute for Health Research, UK), LGBTQI+ suicide prevention (Suicide Prevention Australia), and nature-based interventions for reducing loneliness (National Health and Medical Research Council, Australia). Andy Jolly is a research associate at the Institute for Community Research and Development (ICRD) at the University of Wolverhampton. His research explores the interaction between child welfare and immigration control. He trained as a social worker and before entering academia managed an advocacy project for migrant children. Anne Jones is Emeritus Professor at Victoria University. Her research interests center on improving outcomes for women participating in vocational education, particularly education for traditionally male occupations. She is a member of the Strategy Council of the Tradeswomen Australia Association and a non-executive director of the board of Chisholm Institute.

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Lisa Joyce is a Health Promotion professional with a passion for health equity. She believes all Australians have the right to make informed decisions about their health and have equitable access to the services they need. Lisa currently works at BreastScreen Victoria where she partners with vulnerable communities to increase breast health literacy and reduce barriers to breast screening. Roberta Julian is Adjunct Professor of Sociology and Founding Director of the Tasmanian Institute of Law Enforcement Studies at the University of Tasmania. Her research addresses social justice issues with a focus on migrant and refugee settlement, policing, and criminology (including projects on youth justice, family violence, and forensic science). Roberta received the University of Tasmania Research Medal in 2019 and the Distinguished Service to Australian Sociology Award from the Australian Sociological Association in 2020. Alex Kaley is a lecturer in Health Inequalities at Lancaster University. Her research interests focus on the health and social inequalities experienced by people with learning disabilities, as well as innovations in policy and practice designed to reduce those inequalities. In exploring these issues Alex has developed expertise in participatory and qualitative methods of inquiry, and published in leading peer-reviewed journals on these topics. Akram Kangouri is a PhD candidate in Media Studies at the University of Western Ontario, Canada. By studying the cultural aspects of storytelling in the context of displacement, Akram uses qualitative methods, such as phenomenology, to explore how telling stories brings meaning to our everyday life experience and also constructs our very sense of selfhood. Her research focuses on the phenomenology of displacement, narration, and identity. Lynn Kemp is Distinguished Professor at the School of Nursing and Midwifery, Western Sydney University. Lynn’s work is leading translation of research findings into population-scale programs. Her local, national, and international research in early childhood is bringing quality evidence-based early intervention programs to vulnerable families with young children in Australia and worldwide. Sue Kildea is recognized internationally as a midwifery leader, a health services researcher, and an advocate for returning birthing services to First Nations communities and control, including in rural and remote and very remote communities. She is passionate about the year before and after birth and sees it as the best time to positively impact mothers, babies, and families. She uses research for social change and is Co-Director of the Molly Wardaguga Research Centre at Charles Darwin University.

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Adela Tesarek Kincaid is a faculty researcher at the Applied Research and Innovation Center at Selkirk College in the West Kootenays of British Columbia, Canada. Adele focuses on rural, community-based research and on the methodological area of situational analysis, which she has applied to animal–human interactions and to Indigenous relationships with animals. Travis S. K. Kong is an associate professor in the Department of Sociology at the University of Hong Kong. His research specializes in Chinese homosexuality and masculinity, prostitution in Hong Kong and China, social impacts of HIV/AIDS, and transnational Chinese sexualities. He is the founder of Gay & Grey, the first and only non-profit non-governmental organization in Hong Kong serving older (aged 60+) members of the LGBTQI+ community. Hala Kurban graduated from the School of Public Health at La Trobe University, Australia. She conducted her honors thesis on social inclusion/exclusion among young refugees from the Middle East under the supervision of Pranee Liamputtong. She has published several papers from this project. Daniel W. L. Lai is Chair Professor and Head of the Department of Applied Social Sciences, and Director of the Institute of Active Ageing, the Hong Kong Polytechnic University. He is a scholar in social work and gerontology, health and aging, culture and immigration, and outcome evaluation. He has worked to integrate research and practice knowledge that aims at strengthening the linkages between social policy, social service provision, and academic teaching and research. Dianne Lalonde is a research associate with the Learning Network at the Centre for Research & Education on Violence Against Women & Children (CREVAWC) at Western University, Canada. Her role involves knowledge mobilization activities on the continuum of gender-based violence. Dianne is also a PhD candidate (ABD) in Political Science at Western University, where her research explores the politics of identity and systemic oppression. Eric Leake is an assistant professor of English at Texas State University. His areas of research include the intersection of rhetoric and psychology as well as civic literacies and writing pedagogy. Barry M. W. Lee is a registered social worker, and guest lecturer with the Department of Special Education and Counselling at the Education University of Hong Kong. His primary areas of interest and research include masculinities, sexual health, sexual minorities, and sexuality.

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Laura M. Lee is Director of Research and Innovation at the International Institute for Child Rights and Development and an adjunct professor at the University of British Columbia. In her work on global child health, protection, and participation, she seeks to strengthen well-being and amplify the voices of children, youth, and communities. Sally Lee is a lecturer in social work at Bournemouth University, splitting her time between teaching and undertaking research on a variety of projects including mental capacity, adult safeguarding, and sexual well-being. Her research interests focus on often marginalized populations, including investigating the experience of financial abuse and the detriment to individuals and society beyond financial loss. Kate Lessing has 20 years’ experience as a social worker in a broad range of health and community settings. Her research interests include the use of telehealth in mental health services, the impact of social determinants on mental health outcomes, and centering the voice of service users through the mutual, authentic exploration and dismantling of systemic power and privilege. Anne Lindblom is a Swedish, non-Indigenous researcher with Indigenous family ties in Canada. She is an associate professor in Special Education at the Inland Norway University of Applied Sciences, and a senior lecturer in Special Education at Karlstad University, Sweden. Her research interests include special education, inclusion, autism, Indigenous research methodologies and paradigms, teacher education, and supervision. Emma MacDonald is a PhD candidate at the University of Tasmania in the Department of Politics and International Relations. Her research interests are in the areas of social policy, policy evaluation, and disadvantage. Her PhD research project explores the relationship between policy problem definition and policy failure in the area of Australian Commonwealth government policy responses to “Indigenous disadvantage.” Freya MacMillan is an associate professor in Health Science at Western Sydney University and internationally recognized Health Promotion practitioner. Her community-engaged research focuses on the co-development, implementation, and evaluation of interventions for the prevention and management of diabetes in those most at risk. Natasha Mahoney is a research assistant at Curtin University, with honors qualifications in Psychology. Her research interests involve the experiences of vulnerable populations, including mental health and social inclusion. She has been involved in

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significant and diverse research covering an array of social experiences including those of people with intellectual disabilities, women with experience of domestic and family violence, and older Australian men. Sarah-Jade Maidment is a Central Arrernte woman born and bred in Mparntwe (Alice Springs) Northern Territory. Her work in data collection and collation of women’s stories about their birthing journeys ensure that women’s voices are heard in developing the best culturally safe maternity care. Virginia Mapedzahama is a senior researcher whose research focuses on understanding the social construction of all categories of difference: the meanings attached to this difference, how it is signified and lived, and its implications for those assigned difference. Her expertise and publications explore new African diaspora in Australia, race and ethnic studies, cross-cultural identities and hybridity, and non-white subjectivities. Brahmaputra Marjadi is a senior lecturer at the Western Sydney University School of Medicine and core member of the Translational Health Research Institute. He is a mixed-methods researcher focusing on various aspects of diversity and their intersectionality, cross-cultural knowledge translation, and community-engaged medical education. Kerrianne Markulin is a non-First Nations woman who has lived with and among Wiradjuri people for over 20 years. Her areas of research are determined by the First Nations people with whom she works, as is the way the research is conducted. Her current research is a collaborative project exploring the extensive cultural significance and influence that esteemed Wiradjuri Elder Aunty Flo Grant had on younger Wiradjuri women in the Grant family, and the pathways she forged for younger First Nations women. Robyn Martin is a social work researcher from RMIT University, Melbourne. Her research and practice focuses on the meaningful inclusion of people with lived experience. Her specific interests include homelessness, mental distress, critical mental health, family violence, and trauma. Kate A. McBride is a senior lecturer in Population Health at the School of Medicine, Western Sydney University. Kate teaches population health, epidemiology, and evidence-based medicine to undergraduate and postgraduate students. Her research expertise is in epidemiology, public health, and the use of mixed methods to improve health at a population level through the prevention and reduction of chronic and non-communicable disease prevalence.

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Brent McDonald is an associate professor at the Institute for Health and Sport at Victoria University. He teaches in the area of the sociology of sport, and physical activity and health, and his research focuses on “race,” social inclusion, migration, and gender in the context of sport in contemporary Australian society. Katrina Skewes McFerran is Professor of Music Therapy and Head of the Creative Arts Therapy program at the University of Melbourne. She is a world leading expert on music and adolescents and is a critical scholar who uses qualitative data and interpretive and participatory approaches to research. She is also the creator of the Massive Open Online Course on “How Music Can Change Your Life” (Coursera). Erin Flynn McKenna holds a PhD in Recreation, Sport and Tourism from the University of Illinois at Urbana-Champaign. Her research focuses on tourism trends that proclaim to be beneficial or supportive of host communities, and she addresses questions pertaining to status and power. She works on projects to support people with disabilities, including one that would use tourism as a means to create employment opportunities. Kim McLeod is Senior Lecturer at the School of Social Sciences at the University of Tasmania. She uses philosophically informed and arts-based approaches to explore the social dimensions of health and well-being. Kim develops best practice in teaching health profession students about diversity and cultural safety. Tara McWhinney is a PhD candidate at the School of Social Work at Carleton University in Ottawa, Canada. In her doctoral research Tara engages women online with online participatory mapping applications to discuss their experiences of social policy and unpaid caregiving. Catherine K. Medina was an associate professor at the UConn School of Social Work and currently teaches in the Policy Practice concentration. The depth of her knowledge crosses many research areas nationally and internationally in the areas of policy equity, human rights, and the social determinants of health. She has been a visiting professor in Vietnam, Costa Rica, and Puerto Rico, integrating social work practice and policy with implications for change. Cara Meixner is an associate professor of Psychology at James Madison University (JMU), where she also directs the Center for Faculty Innovation. A scholar in brain injury advocacy, Cara has published mixed-methods studies and contributed to methodological research on this genre of inquiry. Cara also teaches a doctoral-level course on mixed-methods research at JMU.

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Magnus Mfoafo-M’Carthy is an associate professor at the Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Ontario, Canada. He has worked in adolescent and adult mental health organizations in New York City, British Columbia, and Ontario. His research focuses on community-based/global mental health practice, disability, inclusive education, social policy and issues of discrimination, and marginalization and oppression. Paul Milner was a senior researcher with the Donald Beasley Institute (DBI) for 17 years, where he specialized in inclusive methods. Having recently retired from his research role with the DBI Paul now cooks and gardens and helps with road patrol on a Friday, all the while thinking about the places and ideas he could not have got to without researchers with a learning disability. Brigit Mirfin-Veitch is Director of the Donald Beasley Institute (DBI), an independent charitable trust that conducts research and education in the field of learning (intellectual) disability. She has conducted research with people with learning (intellectual) disabilities for her entire career, and as a sociologist she has a strong interest in understanding the social lives of people with learning disabilities and is committed to initiating and achieving social change through research. Olivia Mitchell is a research fellow in Culture and Rural Health in the Department of Rural Health at the University of Melbourne. Olivia’s research interests include organizational change within health care, cultural inclusion, and improving access to health care for marginalized populations. Romana Morda is a research fellow at the Institute for Health and Sport at Victoria University, and a registered psychologist. Her research interests include women and leadership, examining student transition to university, and intercultural psychology. Haydn Morgan is a lecturer in the Department for Health at the University of Bath. His research is primarily concerned with marginalized youth populations, examining how engagement with sport and physical activity may facilitate access to education, employment, and training; develop citizenship qualities; or enable young people to accumulate and enhance various forms of capital. Marika Morris is a research, evaluation, and training consultant whose clients include Inuit organizations, violence prevention organizations, government departments, and the United Nations Development Programme. She specializes in developing participatory action research projects with groups who have experienced historical and/or current socioeconomic and political suppression, and is widely published in this area.

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Elias Mpofu is a rehabilitation counseling professional with a primary research focus in community health services intervention design, implementation, and evaluation applying mixed-methods approaches. His specific qualitative inquiry orientation is interpretive phenomenological analysis to understand meanings around and actions toward health-related quality of community living with chronic illness or disabilities. Rosediani Muhamad is an associate professor and the head of the Family Medicine Department at Universiti Sains Malaysia (USM), and runs a women’s and sexual health clinic at Hospital USM. She has published around 40 papers in reputed journals as well as book chapters, and has been serving as a reviewer for many indexed and Publons journals, especially related to women’s and sexual health issues. Lucy Murrieta ’s family migrated to the USA seeking better opportunities. After witnessing her parent’s endless labor in the agricultural fields, she realized that education was the only way to a better future. Through education, she could empower herself, her family, and others in the community. The desire to advocate led her to Sunset Community Health Center where she is now Community Relations, Outreach and Eligibility Director. Dorothy W. Ndwiga is a registered nurse, casual lecturer in Health Science at Western Sydney University, and learning facilitator at Torrens University, Australia. Her research and teaching focuses on health promotion and improvement of community health through prevention and management of chronic diseases. An Nguyen is currently doing her PhD at Monash University in Australia. She has a physical disability due to polio. She had been working and researching with people with disabilities in Vietnam for more than 10 years prior to coming to Australia. She is interested in sexual and reproductive health among people with disabilities in Vietnam and has published several papers resulting from her research in the last few years. Andy Nguyen is a postdoctoral researcher at the Learning & Educational Technology Research Unit (LET), University of Oulu. His doctoral research in Information Systems at the University of Auckland focused on the design, development, and implementation of learning analytics information systems in higher education. His research interests cover areas at the cross-sections of information systems, education, and social sciences. Melanie Nind is Professor of Education at the University of Southampton, UK, where she is Director of the Centre for Research in Inclusion. She is a co-director of

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the National Centre for Research Methods and a fellow of the Academy of Social Sciences. Her books include What Is Inclusive Research? (2014) and (with Curtin and Hall) Research Methods for Pedagogy (2018), both published by Bloomsbury Academic. Kyja Noack-Lundberg is a social science researcher who completed her PhD in Gender, Sexuality, and Diversity Studies at La Trobe University. She was a research assistant on the Crossing the Line research project at the Translational Health Research Institute at Western Sydney University, prior to moving to the UK to work as a research fellow at Lincoln University. Her areas of research interest include gendered violence, military sociology, and sociology of emotions. Robert Nonomura is a research associate for the Centre for Research & Education on Violence Against Women & Children (CREVAWC), and a part-time assistant professor of Sociology at Western University, Canada. His sociological research is in social ethics, critical theory, and inequality, with a focus on the social-structural dimensions and intersections of gender-based violence. He coauthored the report “Toward a Trauma- and Violence-Informed Research Ethics Module: Considerations and Recommendations” for CREVAWC. Youdiil Ophinni is a research fellow at the Ragon Institute of MGH, MIT and Harvard, USA. His main work in the past decade has involved both basic and clinical research in the field of HIV/AIDS in Indonesia. Smita Pakhalé is a clinician scientist and clinical research chair in Equity and Patient Engagement in Vulnerable Populations at the Ottawa Hospital Research Institute, and an associate professor at the School of Epidemiology and Public Health at the University of Ottawa. She also leads the Bridge Engagement Centre, a community research office that conducts health equity research in Ottawa, Canada. Andrew Parker is a freelance research consultant with specific expertise in the experiences of marginalized and vulnerable young people across the sport and criminal justice sector. More specifically, his research focuses upon the way in which sport and physical activity might facilitate better life chances and choices for “hard to reach” groups. Yvonne Parry is internationally and nationally recognized for her skills in framing acute care and community-based research that validates improving professional practice in complex social systems, making a major contribution to improving health care and building stronger communities for underserviced, disadvantaged, and

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vulnerable populations. Her work exists at the important intersection of nursing, primary health, public health, and community health services for vulnerable children and populations. Sayani Paul holds a PhD in Social Work augmented with extensive experience in areas of mental health and well-being of various populations such as youth living with serious mental health conditions, people living with intellectual disabilities, and those experiencing homelessness. Currently based in Toronto, Sayani has worked in various research capacities in health care settings. Some of her expertise lies in conducting evaluation research using mixed methods, involving multiple stakeholders’ experiences and perspectives. Robert B. Pereira is an Australian occupational scientist and occupational therapist. He is passionate about enabling occupation and social inclusion for people living with chronic and complex health, disability, and psychosocial issues. His research interests include inclusive methodologies, occupational justice, the Capabilities Approach, and systemic advocacy. Janette Perz is Director of the Translational Health Research Institute (THRI) at Western Sydney University, Australia. She has undertaken a significant research program in sexual and reproductive health, including an Australian Research Council-funded projects examining premenstrual syndrome (PMS) in heterosexual and lesbian relationships; couple-based psychological interventions for PMS; changes to sexuality and fertility after cancer; sexual well-being and reproductive needs in CALD populations; and LGBTQI+ cancer care. Rashmi Pithavadian is a MRes candidate at the School of Health Sciences, Western Sydney University. Her thesis focuses on how women with the female sexual dysfunction vaginismus seek help, and its impact on their sense of self. Rashmi’s research utilizes a multidisciplinary approach to supporting the holistic well-being of marginalized populations in sexual health. Linda Portsmouth is a senior lecturer in Health Promotion at the School of Population Health at Curtin University in Perth, Western Australia. Her lecturing and research interests include the impact of the mass media on public health, working in partnership with communities to develop health communication materials and strategies, media advocacy, behavior change communication, and social marketing. Dafna Regev is an art therapist and researcher. She is a senior lecturer and member of the Emili Sagol Creative Arts Therapies Research Center at the University of Haifa, Israel. Her research deals with parent–child art psychotherapy, art therapy in

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the education system and theoretical conceptualizations of art therapy approaches for a variety of populations. Zoe Sanipreeya Rice is an independent scholar. She graduated from Monash University and the University of Melbourne, in Australia. She is currently doing her GradDip in Psychology, a subject that she has a keen interest to pursue as a higher degree study in the future. Zoe has recently co-authored a number of book chapters on social inclusion, social determinants of health, and research methods in the health social sciences. Alex Richmond holds dual BA/BS degrees from the University of Georgia, and an MSc in Sport Management, Policy and International Development from the University of Edinburgh. She is currently pursuing a PhD in Public Health at the University of New South Wales (UNSW) by exploring social enterprise as a mechanism for sustainability in Sport for Social Change organizations. Christopher A. Riddle is Associate Professor and Chair of Philosophy at Utica College, where he is also Director of the Applied Ethics Institute. He is the author of Disability and Justice (Lexington Books, 2014) and Human Rights, Disability, and Capabilities (Palgrave Pivot, 2016), and the editor of From Disability Theory to Practice (Lexington Books, 2018). Yvette Roe is a Njikena Jawuru woman who has more than 25 years’ experience working in the First Nations health sector. As an Aboriginal scholar, she uses research as a part of her activism to improve health and well-being for First Nations Australians. Yvette’s research is co-designed with families, communities, and service providers. Yvette is Co-Director of the Molly Wardaguga Research Centre at Charles Darwin University. Cameron Rose is a lecturer, designer, and filmmaker. Cameron’s research investigates how communication design can facilitate social and health research, represent diversity, translate between epistemologies, and advocate for health and social justice issues. He is currently Program Director of Collaborative Design at Monash Art, Design and Architecture. David Roy is a lecturer and researcher in Education and Creative Arts at the University of Newcastle. He uses his research to inform inclusion and equity practices for children across Australia, with a particular focus on children with a disability and engagement with the Arts. His research interests are in drama and arts learning, and inclusion in education.

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Maria Ruud is an associate clinical professor at the University of Minnesota School of Nursing. She teaches in the Women’s Health/Gender-Related Nurse Practitioner doctoral program. She is a certified women’s health nurse practitioner and maintains a clinical practice at a teen sexual and reproductive health clinic. Maria has a special interest in the care of sexual and gender diverse populations. Neveen Saied is a director at the International Institute for Child Rights and Development with 13 years of progressive experience in the fields of development and project management. She has experience in youth-led participatory action research methods focusing on strengthening youth participation and protection in emergency and development settings. Erin Sanchez graduated from the School of Public Health at La Trobe University, Australia. She conducted her honors thesis on the role of community gardens in the health and well-being of older persons from rural communities under the supervision of Pranee Liamputtong. She has published several papers from this project. Ma. Cristina G. Saulo earned her PhD in Anthropology from the Australian National University. Prior to migration to Australia, she was a senior researcher at the University of the Philippines Centre for Women’s Studies (UPCWS), a lecturer at De La Salle University, and an independent documentary photographer. Her main photographic and research interests are in the everyday lives of South East Asian Indigenous people, women laborers, and migrant women. Virginia Schmied is Professor of Midwifery in Nursing and Midwifery, Western Sydney University. She researches the social and emotional health and well-being of women and men in the transition to parenthood, breastfeeding, and young child feeding; perinatal mental health, particularly in vulnerable communities; and researching improvements in service delivery and professional practice. Jessica Sekar is a researcher and writer at the Translational Health Research Institute, Western Sydney University. Her research focuses on sexual violence and experiences of cancer by LGBTQI+ people. She serves as a community liaison for organizations and works with vulnerable populations including LGBTQI+ people and culturally and linguistically diverse people. Tanya Serry is a qualified and experienced speech pathologist. She works as an academic in both Speech Pathology and Education at La Trobe University. She is an experienced clinician and researcher in the area of children’s language and literacy and she has adopted a social justice perspective based on the idea that high-quality educational experiences are a key factor in bridging social and academic inequities.

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Zubaidah Mohamed Shaburdin is a research assistant in Culture and Rural Health at the Department of Rural Health at the University of Melbourne. Zubaidah has a strong interest in and passion for social justice and has worked closely with community organizations, health professionals, and service providers on inclusive care practices. Sergio A. Silverio is an academic psychologist and research associate in Social Science of Women’s Health at King’s College London. Sergio holds Master’s degrees from the University of Liverpool, where he is an honorary fellow, and Brunel University London. He is also an honorary research fellow at the Elizabeth Garrett Anderson Institute for Women’s Health, University College London. Mervyn Sim is a practicing clinical psychiatrist at Sentosa Hospital Kuching, Malaysia. He obtained his Master’s degree in Psychological Medicine at University of Malaya. Ever since the COVID-19 pandemic, Mervyn has been co-leading the Mental Health Psychosocial Support (MHPSS) team at Sentosa Hospital Kuching. His research and clinical interests are mainly in child and adolescent psychiatry, as well as liaison psychiatry. David Simmons is a distinguished professor of Medicine at the Western Sydney University Macarthur Clinical School, Head of the Campbelltown Hospital Endocrinology Department, Medical Advisor on Diabetes to South Western Sydney Local Health District, and Director of the Diabetes Obesity and Metabolism Translation Unit. His research spans diabetes epidemiology, diabetes in pregnancy, and diabetes prevention and diabetes service development. Magenta Simmons is a senior research fellow at Orygen and the Centre for Youth Mental Health at the University of Melbourne. Her research focuses on consumer involvement in youth mental health, including peer support, shared decision making, and youth partnerships in research. Celeste Simoes is Assistant Professor at the Faculty of Human Kinetics, University of Lisbon, Portugal. She is a member of the Center for the Promotion of Health Education and of the Research Center at the Environmental Health Institute, at the same institution. Her areas of interest include resilience, social and emotional learning, risk behaviors in adolescence, health education and promotion, peer mentoring, and special needs education. Nina Sivertsen is an Arctic Indigenous Sámi woman from northern Norway currently working on Kaurna Lands in Adelaide, as an RN, senior lecturer, and researcher within the College of Nursing and Health Sciences at Flinders University. Her inter-Indigenous research is internationally acknowledged, and her work is the

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recipient of many awards and focuses on women’s empowerment and leadership, in particular within Indigenous health in a socio-political context of assimilation and colonization. Judith Sixsmith is Professor of Health Related Research at the University of Dundee, UK. Her research interests lie in the areas of health and well-being where she explores the ways in which people, particularly older people, living in disadvantaged communities experience processes of marginalization within existing health, social, and cultural systems. She has substantial experience in directing research and publishing in the area of health and aging. Anri Smit is a doctoral graduate from the Department of Psychology at Stellenbosch University, South Africa. Her PhD research involved a multi-modal narrative approach to understanding the breast cancer stories of South African women living with recurrent disease. Anri continues to work in the field of Health Psychology with a specific focus on breast cancer and narrative-related topics. Sharon Snir is an art therapist and researcher. She is an associate professor and the Head of the MA Art Therapy Program at Tel Hai College, Israel. Her research deals with joint drawings, art therapy in the education system, as well as the triangular relationship in art therapy and the construction of assessment tools for this field. Ana M. Sobočan is an assistant professor at the Faculty of Social Work, University of Ljubljana, Slovenia. Her teaching and research interests include ethics in social work, research ethics, gender, and disability. She is the chair of a research ethics committee in the field of social work and social care. Wendy Somerville is a lecturer and PhD candidate at the University of Canberra (UC) and a Jerrinja woman. She is a member of the Centre for Creative and Cultural Research at UC where she is involved in the Story Ground research project and a committee member of the UC Collaborative Indigenous Research Initiative (CIRI). Jae Eun Song is a registered art therapist and graduate researcher based in Melbourne, Australia. Jae Eun’s PhD research explores how young people who have had challenges in life experience art therapy. As a senior clinician in a community-based trauma care program and the university-based art therapist, Jae Eun works with diverse groups of young people. Ramon Spaaij is a professor at the Institute for Health and Sport at Victoria University, Australia. He also holds a special chair of Sociology of Sport at the University of Amsterdam. His work contributes to contemporary academic and

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public debates on sport, social inclusion, community development, refugee settlement, and violence. Kathleen A. Spanos is a dancer and dance scholar specializing in studies of dance, music, and festival in Brazil, the Eastern Caribbean, and Ireland. In her research, she examines kinesthetic strategies involved in “dances of resistance.” She has a PhD in Theatre, Dance, and Performance Studies, University of Maryland, a Master in Traditional Irish Dance Performance, University of Limerick, and a BA in Cognitive Science, University of Virginia. Rebecca Spies is currently employed as a research officer at the communitymanaged mental health organization Neami National. Here she uses qualifications in social work and gender studies to support genuinely collaborative research that centralizes consumer experience. Dan J. Spitzner is an associate professor of Statistics at the University of Virginia. His interests are in the development of statistical theory and methodology especially for use in the social sciences. His recent work has focused on source-matching problems in forensic science. Zahra Stardust is a sex worker, lawyer, artist, and academic whose work is concerned with intersections between criminal law, sexuality, labor, and justice. She is currently working on a Stigma Indicators Monitoring Project with Scarlet Alliance and the UNSW Centre for Social Research in Health, collecting qualitative data on sex work stigma around Australia. She has published chapters in New Feminist Literary Studies, Orienting Feminisms, and Queer Sex Work. Zaharah Sulaiman is a medical lecturer and a lactation consultant from the Universiti Sains Malaysia (USM). She graduated from the University of Adelaide with a Bachelor of Medicine and a Bachelor of Surgery. She obtained her Master in Public Health from USM, and her PhD from La Trobe University, Melbourne. Her PhD thesis was on breastfeeding practices among working mothers in Malaysia. James E. Sutton received his PhD in Sociology from Ohio State University. He is currently an associate professor of Sociology, Chair of the Sociology Department, and Chair of the Institutional Review Board (IRB) at Hobart and William Smith Colleges in Geneva, New York. His teaching and research interests include criminology, juvenile delinquency, penology, and research methods. Dusanee Suwankhong is an assistant professor in public health at Thaksin University, Thailand. Since obtaining a PhD from La Trobe University, Australia, she

About the Contributors

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has carried out research in various areas including traditional medicines, breast cancer, HIV/AIDS, school-aged children, older person health, and motherhood. Her recent qualitative work focuses on Muay Thai fighters. She has published many papers in these areas. Jassamine Tabibi is a research associate with the Learning Network (LN) at the Centre for Research & Education on Violence Against Women & Children (CREVAWC) at Western University, Canada. She is involved in producing and disseminating various resources on critical issues related to violence against women and children, including barriers facing immigrant and refugee women fleeing violence and experiencing homelessness. She has a background in political science and public administration. Ann Taket is an honorary professor at Deakin University, Australia. She retired at the end of 2019, after over 40 years in public health-related research initially in the UK, then at WHO, and finally in Australia. Ann has published extensively in social inclusion/exclusion in health and social care. In her retirement, she continues to write on a variety of topics, and is enjoying life as a public health activist in environmental and human rights issues. Naiema Taliep is a research psychologist at the Institute for Social and Health Sciences at the University of South Africa and the Masculinity and Health Research Unit, with expertise and extensive experience in community-based participatory action research, community engagement, violence prevention, program development, and evaluation. She has conducted research on the development and psychometric testing of questionnaires in the fields of violence, family functioning, safety, and peace- and health-related quality of life. Rayner Kay Jin Tan is a PhD candidate of Public Health at the Saw Swee Hock School of Public Health, National University of Singapore. He has a background in sociology and is a socio-behavioral researcher by training. He is a recipient of the Courage Fund PhD scholarship and the Singapore Population Health Improvement Centre (SPHERiC) fellowship. His current work revolves broadly around substance use, mental health, and their interactions with sexual health. Rebecca L. Thomas is an associate professor and the director of the Center for International Social Work Studies at the University of Connecticut. Her current research and scholarship include issues related to remittances, international development, poverty, migration, and civic engagement and participation by refugees. She represents the International Association of Schools of Social Work on the NGO Committee on Migration at the United Nations.

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About the Contributors

Pauline B. Thompson is Professor of Psychology at the Pennsylvania State University, USA. She is a critical community health psychologist who has held academic appointments in New Zealand, Australia, and now in the USA, applying the cultural safety model to educate health and human service professionals. Ronda Thompson is Lead Community Activator for community engagement in the Pasifika Preventing Diabetes Programme and played this role in the pilot Le Taeao Afua study. She trains and coordinates peer support programs under the Diabetes, Obesity and Metabolism Translational Research Unit at Western Sydney University. Michael Tidhar is a lived experience co-researcher and Mental Health student. He is interested in increasing public mental health awareness, improving how professionals respond to people in crisis, and exploring how best to support young people in their recovery journeys. Hongmei Tong is an assistant professor at the School of Social Work, Faculty of Health and Community Studies, MacEwan University in Canada. Her research interests center on social exclusion and integration of ethno-cultural older adults, mental health in later life, gerontological social work education and practice, social determinants of health, digital storytelling, and mixed methods. Bethaney Turner is an associate professor in the Faculty of Arts and Design at the University of Canberra. Her interdisciplinary research explores how more sustainable urban living behaviors can be developed and fostered in a time of humaninduced climate change. Jane M. Ussher is Professor of Women’s Health Psychology, at the Translational Health Research Institute, Western Sydney University, Australia. A trained clinical psychologist, she is editor of the Routledge Women and Psychology book series, and has researched and published extensively on women’s sexual and reproductive health, women’s madness, and the health of marginalized groups, including culturally and linguistically diverse women and LGBTQI+ populations. Priya Vaughan is a postdoctoral fellow at the Black Dog Institute. Using arts-based qualitative research methods, her work focuses on women’s mental health and wellbeing. Irena Veljanova is a lecturer in Sociology at the School of Social Sciences and Psychology at Western Sydney University. She completed her PhD in the field of Human Welfare Studies and Services and continues to have research and teaching

About the Contributors

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focuses on multicultural health, health ethnographies, critical gerontology, migration, and social policy. Jan Walmsley is an independent researcher and author. She started doing what she later called “inclusive research” in the late 1980s. She remains committed to it, is still learning different ways to do it, and is keen to find ways to make it more sustainable and more influential. Christine A. Walsh , Professor and Associate Dean (Research and Partnerships) Faculty of Social Work, is interested in research with marginalized older adults including those who are socially excluded, and living with poverty and homelessness, in order to improve their well-being and contribute to social justice. Gail E. Whiteford has been an active contributor to, and influencer in, occupational therapy and occupational science for three decades. She currently holds the position of Strategic Professor and Conjoint Chair of Allied Health and Community Wellbeing between Charles Sturt University and Mid North Coast Local Health District based in Port Macquarie, NSW. She also chairs Occupational Therapy Australia’s Research Foundation and is Project Lead for the World Federation of Occupational Therapy International Occupational Narratives project. Elaine C. Wiersma is an associate professor in the Department of Health Sciences and the director of the Centre for Education and Research on Aging & Health (CERAH) at Lakehead University, Canada. Using participatory qualitative methodologies, her research engages people living with dementia and care partners focusing on inclusion, advocacy, and human rights spanning community (including rural and northern communities) and long-term care environments. Kyar Wilkey is a Ngarrindjeri woman. She has an honors degree in Psychology and is an associate research and PhD student at the Translational Health Research Institute at Western Sydney University. Kyar’s main research interests are Indigenous health and well-being, particularly related to children and families, and complex trauma. Catherine Wilkinson is a senior lecturer in Education at Liverpool John Moores University. Prior to this, Catherine worked as a Lecturer in Children, Young People and Families in the Faculty of Health and Social Care, Edge Hill University. Catherine completed her PhD in Environmental Sciences at the University of Liverpool, funded by an ESRC CASE award.

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About the Contributors

Samantha Wilkinson is a senior lecturer in Childhood and Youth Studies at Manchester Metropolitan University. Prior to this, she worked as a lecturer in Human Geography at the same institution. Samantha completed her PhD in Human Geography at University of Manchester, with a focus on “young people, alcohol and urban life.” Amanda Musicka-Williams has been a practicing dramatherapist in special education for 16 years. She is currently a tutor at the University of Melbourne in the Masters of Creative Arts Therapy program and is passionate about integrating dramatherapy into research practice which is accessible to people with intellectual/ developmental disabilities. Robyn Williams has nursing and education qualifications and 40 years of experience of working with Indigenous peoples, primarily in the Northern Territory but also all over Australia. Her experience and interests include cultural safety, effective communication, curriculum development and program implementation, evaluation of community-based programs, and research in rural and remote health issues. Nathan J. Wilson is an associate professor at the School of Nursing and Midwifery, Western Sydney University. He is an applied researcher with a focus on the intersection of health, disability, inclusion, and gender. His primary areas of interest are research that solves the myriad of issues related to the exclusion of people with intellectual and developmental disability from a range of social and health contexts. Nancy P. Wingo is an associate professor and Director of Instructional Innovation at the School of Nursing at the University of Alabama at Birmingham (UAB). Nancy has taught for over 30 years in various fields. As Director of Instructional Innovation, she leads initiatives to promote best practices in teaching. She has published many peer-reviewed articles and presented her research to international and national professional associations. Tom Wood is a mental health peer worker and consumer and research advocate from Melbourne, Australia. He uses his experience of mental health to inform his work and advocacy in changing and improving the mental health system and how people are treated in it, particularly through consumer-led research to find and demonstrate better ways of doing things. Ryan Woolrych is Professor of Ageing and Urban Studies and Director of the Urban Institute at Heriot-Watt University, Edinburgh. His research interests explore aging and urban transformations, sense of place, and age-friendly cities and

About the Contributors

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communities. He has led on large cross-national research grants, adopting visual participatory methods for understanding the relationship between older people and place. His work has mainly focused on delivering policy and practice impact in the area of age-friendly cities and communities. Alex Workman is a criminologist from Western Sydney University who focuses on marginalized LGBTQI+ people’s intimate partner violence experiences and how they coalesce with law enforcement and public health outcomes. Due to his recognition as a subject matter expert and research output, Alex is now the convener of the Intersectionality in Law Enforcement and Public Health Special Interest Group for the Global Law Enforcement and Public Health Association (GLEPHA). Laura H. V. Wright is Director of Participatory Methodologies, International Institute for Child Rights and Development, and a Research and Teaching Fellow, Childhood and Youth Studies Research Group, University of Edinburgh. Her research, teaching, and practice focuses on participatory research methods led by and with children and young people, play, children’s rights, children and young people’s meaningful participation, social justice, and psychosocial well-being. Chika Yamada is a postdoctoral fellow at the Center of Southeast Asian Studies, Kyoto University, Japan. Her research work mainly focuses on mental health stigma reduction and peer involvement, especially in the East and Southeast Asia region. Daryl W. J. Yang holds a BA (magna cum laude) with a minor in Anthropology at Yale-NUS College and an LLB (First Class Honors) from the Faculty of Law at the National University of Singapore. He assisted in publishing the 2019 State Sponsored Homophobia report by the International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA World), and published a paper in the Singapore Law Review. Min Ok Yang is associate professor at Sun Moon University, Korea. She received her Master of Social Work and PhD from Soongsil University and has more than 10 years of field experience working for various institutions and facilities, including a community rehabilitation center, a community center, the Community Chest, and Soongsil University Student Counseling Center. Sharon Yanicki is an adjunct assistant professor in the Faculty of Health Sciences, University of Lethbridge, Alberta, Canada, and a registered nurse with a PhD in nursing and an MSc in health promotion. Since her retirement in 2017, Sharon continues to engage in research on health equity, social inclusion/exclusion, child poverty, adverse childhood experiences, and nursing ethics.

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About the Contributors

Anne Yee is an associate professor and clinical psychiatrist at University of Malaya and University Malaya Medical Center respectively. Her contribution to society is reflected by her dedication and work done as the current president of the mental health team at the Tzu Chi International Medical Association (TIMA) and as assistant secretary for the Addiction Medicine Association of Malaysia (AMAM). Her research and clinical interests are in addiction and dual diagnosis. Jill Guernsey de Zapien has been involved in community-based public health interventions and research throughout the Southwest and Mexico for more than 30 years. As co-investigator of numerous initiatives that are focusing on the underserved, Jill works directly with communities to develop strategies for prevention interventions and the elimination of health disparities.

Contributors

Penelope A. Abbott Department of General Practice, School of Medicine, Western Sydney University, Campbelltown, Australia Ali Adan Abdi Jomo Kenyatta University of Agriculture and Technology, Nairobi, Kenya Tineke A. Abma Amsterdam UMC, Amsterdam Institute of Public Health, Amsterdam & Leyden Academy on Vitality & Ageing, Leiden, The Netherlands Jessica Abramovic Canberra, ACT, Australia Michaels Aibangbee School of Health Sciences, Western Sydney University, Penrith, NSW, Australia Migrant and Refugee Mental Health, Anglicare Sydney, Sydney, NSW, Australia Mujibul Anam Department of Rural Health, The University of Melbourne, Shepparton, VIC, Australia Daniel Añorve Añorve Department of Government and Political Studies, Universidad de Guanajuato, Guanajuato, Mexico Nicholas Antonini Sociology and Social Studies, University of Regina, Regina, SK, Canada Mandy M. Archibald College of Nursing, University of Manitoba, Winnipeg, MB, Canada Caring Futures Institute, Flinders University, Bedford Park, Australia Alan Armstrong Carmarthen, UK Linda Baker Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada Jill Bamforth Department of Marketing and Management, Swinburne University of Technology, Hawthorn, VIC, Australia Isabelle Bartkowiak-Théron Tasmanian Institute of Law Enforcement Studies, University of Tasmania, Hobart, TAS, Australia lxi

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Contributors

Paul Bartolo University of Malta, Msida, Malta Michelle J. Bellino Educational Studies, School of Education, University of Michigan, Ann Arbor, MI, USA Omar Ben Haman School of Social Sciences, University of Tasmania, Hobart, TAS, Australia Sarah Bendall Orygen National Centre of Excellence in Youth Mental Health, Parkville, VIC, Australia Centre for Youth Mental Health, The University of Melbourne, Parkville, VIC, Australia Sandra Benza Monash Health, Pakenham, VIC, Australia Jennifer Bibb Faculty of Fine Arts and Music, The University of Melbourne, Southbank, VIC, Australia Christine Bigby Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia Simon Biggs School of Social and Political Sciences, University of Melbourne, Melbourne, VIC, Australia Nathalie Bouchard University of Calgary, Calgary, AB, Canada Lisa Bourke Department of Rural Health, The University of Melbourne, Shepparton, VIC, Australia Katherine M. Boydell Black Dog Institute, Randwick, Australia Bernadette Brady Physiotherapy Department, Liverpool Hospital, Liverpool, NSW, Australia Sydney Partnership for Health, Education, Research and Enterprise (SPHERE), Sydney, NSW, Australia Western Sydney University, Sydney, NSW, Australia The University of Sydney, Sydney, NSW, Australia Eloise Brook The Gender Centre Inc, Sydney, NSW, Australia Samed Bulbulia Institute for Social and Health Sciences, University of South Africa; South African Medical Research Council, Masculinity and Health Research Unit, University of South Africa (SAMRC-UNISA), Cape Town, South Africa Anne Bunde-Birouste School of Population Health, University of New South Wales, Sydney, NSW, Australia Sarah L. Canham College of Social Work and College of Architecture and Planning, University of Utah, Salt Lake City, UT, USA Ashley Carr School of Social and Political Sciences, University of Melbourne, Melbourne, VIC, Australia

Contributors

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Stephen Case School of Social Sciences and Humanities, Loughborough University, Loughborough, UK Angela Paredes Castro College of Health & Biomedicine, Victoria University, Melbourne, VIC, Australia Rocco Cavaleri School of Health Sciences, Translational Health Research Institute, Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Penrith, NSW, Australia Valeria Cavioni University of Milano Bicocca, Milan, Italy Luis Fernando Cedeño Astudillo Department of Law, Faculty of Humanities, Social Sciences and Laws, Metropolitan University of Ecuador, Guayaquil, Ecuador Carmel Cefai University of Malta, Msida, Malta Vivian Chávez College of Health and Social Sciences, San Francisco State University, San Francisco, CA, USA Chamnan Chinnasee Department of Sports Science, Faculty of Health and Sports Science, Thaksin University, Phatthalung, Thailand Lucy Chipchase College of Nursing and Health Sciences, Flinders University, Bedford Park, SA, Australia Charlotte L. Clarke Social Sciences & Health, Durham University, Durham, UK Anne Collis Barod Community Interest Company, Carmarthen, UK Derek Cook Canadian Poverty Institute, Ambrose University, Calgary, AB, Canada Reinie Cordier Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK Sean Creaney Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, UK Alan Crouch Department of Rural Health, The University of Melbourne, Ballarat, VIC, Australia Vanessa Currie International Institute for Child Rights and Development; Terre des hommes, University of Edinburgh; University of British Columbia, Victoria, BC, Canada Fiona Cuthill School of Health in Social Science, University of Edinburgh, Edinburgh, Scotland, UK Kate D’Cruz Summer Foundation, Australia & Discipline of Occupational Therapy, La Trobe University, Melbourne, VIC, Australia Chandrani Dasgupta Social Science Researcher, Singapore, Singapore

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Contributors

Steven Davey Department of Psychological Medicine, University of Otago, Wellington, New Zealand Adèle de Jager Adèle de Jager Clinical Psychology, Sydney, Australia Jill Guernsey de Zapien Health Promotion Sciences, College of Public Health, University of Arizona, Tucson, AZ, USA Nada DeCat School of Politics and Philosophy, Deakin University, Melbourne, VIC, Australia Vaska Dervisovski Institute of Health and Sport, Victoria University, Melbourne, VIC, Australia Hervita Diatri Department of Psychiatry, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia Jacinta Douglas Summer Foundation, Australia & Living with Disability Research Centre, School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, VIC, Australia Asmae Doukani Department of Population Health, Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, UK Kathryn Droppert Neami National, Preston, VIC, Australia Ella Dumaresq Faculty of Fine Arts and Music, The University of Melbourne, Southbank, VIC, Australia Tinashe Dune School of Health Sciences, Translational Health Research Institute, Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Penrith, NSW, Australia Rebecca Egan Neami National, Preston, VIC, Australia Priscilla Ennals Neami National, Preston, VIC, Australia Emily Ewens School of Social Sciences – Psychology, London Metropolitan University, London, UK Mei Lan Fang School of Health Sciences, University of Dundee, Dundee, UK Lee-Ann Fenge Department of Social Sciences and Social Work, School of Health and Social Care, Bournemouth University, Poole, UK Martin Fitzgerald School of Allied Health Professions and Midwifery, University of Bradford, Bradford, UK Amber J. Fletcher Sociology and Social Studies and Community Engagement and Research Centre (CERC), University of Regina, Regina, SK, Canada Catherine Flynn Department of Social Work, Monash University, Caulfield East, VIC, Australia

Contributors

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Dennis Foley Faculty of Business Government and Law, The University of Canberra, Canberra, ACT, Australia Valerie Francisco-Menchavez Department of Sociology and Sexuality Studies, San Francisco State University, San Francisco, CA, USA Patsie Frawley Te Kura Toi Tangata – School of Education, University of Waikato, Hamilton, New Zealand Andrew Gall Health Promotion Sciences, College of Public Health, University of Arizona, Tucson, AZ, USA Luis Miguel García Rondón Department of Social Psychology, Social Work and Anthropology, University of Malaga, Malaga, Spain Sarah Gordon Department of Psychological Medicine, University of Otago, Wellington, New Zealand Marta Graça Department of Education and Psychology, University of Aveiro, Aveiro, Portugal Jeff D. Grischow Department of History, Wilfrid Laurier University, Waterloo, ON, Canada Barbara C. Groot Amsterdam UMC, Amsterdam Institute of Public Health, Amsterdam & Leyden Academy on Vitality & Ageing, Leiden, The Netherlands Thomas E. Guadamuz Department of Society and Health, Faculty of Social Sciences and Humanities, Mahidol University, Nakhon Pathom, Thailand Ryan Gustafsson Asia Institute, The University of Melbourne, Melbourne, VIC, Australia Irja Haapala School of Social and Political Sciences, University of Melbourne, Melbourne, VIC, Australia Edward Hall School of Social Sciences, University of Dundee, Dundee, UK Boon Young Han Hankuk University of Foreign Studies, Seoul, South Korea Alex Hawkey Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Bill Heibein North West Dementia Working Group and Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada Kayla Heinemann The Molly Wardaguga Research Centre, Charles Darwin University, Brisbane, QLD, Australia Michele Heisler Michigan Center for Diabetes Translational Research, University of Michigan, Ann Arbor, MI, USA Medical School and School of Public Health, University of Michigan, Ann Arbor, MI, USA

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Contributors

Witthaya Hemapandha Department of Sports Science, Faculty of Health and Sports Science, Thaksin University, Phatthalung, Thailand Philippa Hemus Neami National, Preston, VIC, Australia Tammy L. Henderson Lamar University, Beaumont, TX, USA Sophie Hickey The Molly Wardaguga Research Centre, Charles Darwin University, Brisbane, QLD, Australia Nicholas Hill RMIT University, Melbourne, VIC, Australia Lisa Hodge Institute of Health & Sport, Victoria University, Melbourne, VIC, Australia Cathy Hope Centre for Creative and Cultural Research, Faculty of Arts and Design, University of Canberra, Canberra, ACT, Australia Dell Horey Department of Public Health, College of Science, Health and Engineering, Bundoora, VIC, Australia Syeda Zakia Hossain School of Health Sciences, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia Wendy C. Y. Hu School of Medicine, Western Sydney University, Campbelltown, Australia Kath Hulse Centre for Urban Transitions, Swinburne Institute of Technology, Melbourne, VIC, Australia Boyd Hunter Centre for Social Research Methods, The Australian National University, Canberra, ACT, Australia Paul Hutchison School of Social Sciences – Psychology, London Metropolitan University, London, UK Maia Ingram Health Promotion Sciences, College of Public Health, University of Arizona, Tucson, AZ, USA Ghouwa Ismail Institute for Social and Health Sciences, University of South Africa; South African Medical Research Council, Masculinity and Health Research Unit, University of South Africa (SAMRC-UNISA), Cape Town, South Africa Nataliya V. Ivankova School of Health Professions, The University of Alabama at Birmingham, Birmingham, AL, USA Keith Jacobs School of Social Sciences, University of Tasmania, Hobart, TAS, Australia Sadia Jama The Bridge Engagement Centre, Ottawa, ON, Canada Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada Ottawa Hospital Research Institute, Ottawa, ON, Canada

Contributors

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The School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada Michele Jarldorn University of South Australia, Adelaide, SA, Australia Glenda Jessup The University of Sydney, Sydney School of Health Sciences, Sydney, NSW, Australia Katherine Johnson RMIT University, Melbourne, VIC, Australia Andy Jolly Institute of Community Research and Development (ICRD), University of Wolverhampton, Wolverhampton, UK Anne Jones Institute of Health & Sport, Victoria University, Melbourne, VIC, Australia Lisa Joyce BreastScreen, Carlton South, VIC, Australia Roberta Julian Tasmanian Institute of Law Enforcement Studies, University of Tasmania, Hobart, TAS, Australia Alex Kaley Division of Health Research, Lancaster University, Lancaster, UK Akram Kangouri Faculty of Information and Media Studies, University of Western Ontario, London, ON, Canada Lynn Kemp Western Sydney University, Penrith, NSW, Australia Sue Kildea The Molly Wardaguga Research Centre, Charles Darwin University, Brisbane, QLD, Australia Adela Tesarek Kincaid International Indigenous Studies, University of Calgary, Calgary, Canada Travis S. K. Kong Department of Sociology, The University of Hong Kong, Hong Kong, China Hala Kurban Melbourne, VIC, Australia Daniel W. L. Lai Hong Kong Baptist University, Kowloon Tong, Hong Kong Dianne Lalonde Learning Network, Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada Eric Leake Department of English, Texas State University, San Marcos, TX, USA Barry M. W. Lee Department of Special Education and Counselling, Education University of Hong Kong, Hong Kong, China Laura M. Lee International Institute for Child Rights and Development; Terre des hommes, University of Edinburgh; University of British Columbia, Victoria, BC, Canada Sally Lee Bournemouth University, Bournemouth, UK

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Contributors

Kate Lessing Neami National, Preston, VIC, Australia Pranee Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam Sin How Lim Department of Social and Preventive Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia Anne Lindblom Inland Norway University of Applied Science, Lillehammer, Norway Karlstad University, Karlstad, Sweden Charles Darwin University, Casuarina, NT, Australia Emma MacDonald School of Social Sciences, University of Tasmania, Hobart, TAS, Australia Freya MacMillan School of Health Sciences, Western Sydney University, Campbelltown, NSW, Australia Diabetes Obesity Metabolism Translational Research Unit, Western Sydney University, Campbelltown, NSW, Australia Translational Health Research Institute, Western Sydney University, Campbelltown, NSW, Australia Natasha Mahoney Curtin School of Allied Health, Curtin University, Perth, WA, Australia Sarah-Jade Maidment The Molly Wardaguga Research Centre, Charles Darwin University, Brisbane, QLD, Australia Virginia Mapedzahama African Women Australia Inc., Liverpool, NSW, Australia Brahmaputra Marjadi School of Medicine, Western Sydney University, Campbelltown, NSW, Australia Kerrianne Markulin Centre for Creative and Cultural Research, Faculty of Arts and Design, University of Canberra, Canberra, ACT, Australia Robyn Martin Social Work and Human Services, RMIT University, Melbourne, VIC, Australia Kate A. McBride Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Campbelltown, NSW, Australia Translational Health Research Institute, Western Sydney University, Campbelltown, NSW, Australia School of Medicine, Western Sydney University, Campbelltown, NSW, Australia

Contributors

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Brent McDonald Institute for Health and Sport, Victoria University, Melbourne, VIC, Australia Katrina Skewes McFerran Faculty of Fine Arts and Music, The University of Melbourne, Southbank, VIC, Australia Erin Flynn McKenna Davis, CA, USA Kim McLeod School of Social Sciences, University of Tasmania, Launceston, TAS, Australia Tara McWhinney School of Social Work, Carleton University, Ottawa, ON, Canada Catherine K. Medina School of Social Work, University of Connecticut, Hartford, CT, USA Cara Meixner Department of Graduate Psychology, Center for Faculty Innovation, James Madison University, Harrisonburg, VA, USA Magnus Mfoafo-M’Carthy Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, ON, Canada Paul Milner Donald Beasley Institute, Dunedin, New Zealand Brigit Mirfin-Veitch Donald Beasley Institute, Dunedin, New Zealand Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, New Zealand Olivia Mitchell Department of Rural Health, The University of Melbourne, Shepparton, VIC, Australia Zubaidah Mohamed Shaburdin Department of Rural Health, The University of Melbourne, Shepparton, VIC, Australia Romana Morda Institute of Health & Sport, Victoria University, Melbourne, VIC, Australia Haydn Morgan Department for Health, University of Bath, Bath, UK Marika Morris School of Indigenous and Canadian Studies, Carleton University, Ottawa, ON, Canada Elias Mpofu University of North Texas, Denton, TX, USA University of Sydney, Sydney, NSW, Australia University of Johannesburg, Johannesburg, South Africa Western Sydney University, Sydney, NSW, Australia

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Contributors

Rosediani Muhamad Family Medicine Department, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia Lucy Murrieta Sunset Community Health Center, Yuma, AZ, USA Amanda Musicka-Williams Faculty of Fine Arts and Music, The University of Melbourne, Southbank, VIC, Australia Dorothy W. Ndwiga School of Health Sciences, Western Sydney University, Campbelltown, NSW, Australia Diabetes Obesity Metabolism Translational Research Unit, Western Sydney University, Campbelltown, NSW, Australia An Nguyen School of Social and Political Science, Monash University, Clayton, VIC, Australia Andy Nguyen Learning & Educational Technology Research Unit (LET), University of Oulu, Oulu, Finland Melanie Nind Education School, University of Southampton, Southampton, UK Kyja Noack-Lundberg Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Robert Nonomura Learning Network, Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada Melissa Nott Occupational Therapy, School of Community Health, Charles Sturt University, Albury, NSW, Australia Youdiil Ophinni Ragon Institute of MGH, MIT, and Harvard, Cambridge, MA, USA Smita Pakhalé The Bridge Engagement Centre, Ottawa, ON, Canada Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada Ottawa Hospital Research Institute, Ottawa, ON, Canada The School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada Division of Respirology, Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada Andrew Parker Faculty of Business and Law, University of the West of England, Bristol, UK Tracey Parnell Occupational Therapy, School of Community Health, Charles Sturt University, Albury, NSW, Australia Yvonne Parry College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia Sayani Paul Mental Health Researcher, Toronto, ON, Canada

Contributors

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Robert B. Pereira Hospital Admission Risk Program, Barwon Health, Geelong, VIC, Australia Discipline of Occupational Therapy, Faculty of Health, University of Canberra, Canberra, Australia Private Practice, Geelong, Australia Janette Perz Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Rashmi Pithavadian School of Health Sciences, Western Sydney University, Penrith, NSW, Australia Linda Portsmouth School of Population Health, Curtin University, Perth, WA, Australia Lily Ramsden School of Community Health, Charles Sturt University, Albury, NSW, Australia Dafna Regev Art Therapy, University of Haifa, Azmon, Israel Zoe Sanipreeya Rice Camberwell, VIC, Australia Alex Richmond School of Population Health, University of New South Wales, Sydney, NSW, Australia Christopher A. Riddle Utica College, Utica, NY, USA Yvette Roe The Molly Wardaguga Research Centre, Charles Darwin University, Brisbane, QLD, Australia Cameron Rose United Pop Australia Pty Ltd, Melbourne, VIC, Australia David Roy School of Education, University of Newcastle, Callaghan, NSW, Australia Maria Ruud University of Minnesota School of Nursing, Minneapolis, MN, USA Neveen Saied International Institute for Child Rights and Development; Terre des hommes, University of Edinburgh; University of British Columbia, Victoria, BC, Canada Erin Sanchez Mind Australia Limited, Melbourne, VIC, Australia Ma. Cristina G. Saulo College of Asia and the Pacific, School of History and Language, Australian National University, Canberra, ACT, Australia Virginia Schmied School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia Jessica Sekar Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Tanya Serry School of Education, College of Arts, Social Sciences and Commerce, La Trobe University, Melbourne, VIC, Australia

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Contributors

Sergio A. Silverio School of Life Course Sciences, King’s College London, London, UK Mervyn Sim Sentosa Hospital Kuching, Sarawak, Malaysia David Simmons Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Campbelltown, NSW, Australia Translational Health Research Institute, Western Sydney University, Campbelltown, NSW, Australia School of Medicine, Western Sydney University, Campbelltown, NSW, Australia Magenta Simmons Orygen National Centre of Excellence in Youth Mental Health, Parkville, VIC, Australia Centre for Youth Mental Health, The University of Melbourne, Parkville, VIC, Australia Celeste Simoes University of Lisbon, Lisbon, Portugal Nina Sivertsen College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia Campus Hammerfest, Arctic University of Norway, Tromsø, Norway Judith Sixsmith School of Health Sciences, University of Dundee, Dundee, UK Anri Smit Department of Psychology, Stellenbosch University, Stellenbosch, South Africa Sharon Snir Art Therapy, Tel Hai College, Upper Galilee, Israel Ana M. Sobočan Faculty of Social Work, University of Ljubljana, Ljubljana, Slovenia Wendy Somerville Centre for Creative and Cultural Research, Faculty of Arts and Design, University of Canberra, Canberra, ACT, Australia Jae Eun Song Faculty of Fine Arts and Music, The University of Melbourne, Southbank, VIC, Australia Ramon Spaaij Institute for Health and Sport, Victoria University, Melbourne, VIC, Australia Kathleen A. Spanos University of Maryland, College Park, College Park, MD, USA Rebecca Spies Neami National, Preston, VIC, Australia Dan J. Spitzner Department of Statistics, University of Virginia, Charlottesville, VA, USA

Contributors

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Zahra Stardust Centre for Automated Decision-Making and Society, Queensland University of Technology, Brisbane, Queensland, Australia Berkman Klein Centre for Internet and Society, Harvard University, Cambridge, MA, USA Zaharah Sulaiman School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia James E. Sutton Department of Sociology, Hobart and William Smith Colleges, Geneva, NY, USA Dusanee Suwankhong Department of Public Health, Faculty of Health and Sports Science, Thaksin University, Songkhla, Thailand Jassamine Tabibi Learning Network, Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada Ann Taket School of Health and Social Development, Deakin University, Burwood, VIC, Australia Naiema Taliep Institute for Social and Health Sciences, University of South Africa; South African Medical Research Council, Masculinity and Health Research Unit, University of South Africa (SAMRC-UNISA), Cape Town, South Africa Rayner Kay Jin Tan University of North Carolina Project-China, Guangzhou, China Rebecca L. Thomas School of Social Work, University of Connecticut, Hartford, CT, USA Pauline B. Thompson Psychology Department, Pennsylvania State University, Media, PA, USA Ronda Thompson School of Medicine, Diabetes Obesity Metabolism Translational Research Unit, Western Sydney University, Campbelltown, NSW, Australia Michael Tidhar Neami National, Preston, VIC, Australia Hongmei Tong Faculty of Health and Community Studies, MacEwan University, Edmonton, AB, Canada Bethaney Turner Centre for Creative and Cultural Research, Faculty of Arts and Design, University of Canberra, Canberra, ACT, Australia Jane M. Ussher Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Priya Vaughan Black Dog Institute, Randwick, Australia Irena Veljanova School of Social Sciences, Western Sydney University, Liverpool, NSW, Australia

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Suzanne Vine-Daher School of Nursing and Allied Health, Bethlehem University, Rue des Freres, Palestine Jan Walmsley Open University, Milton Keynes, UK Christine A. Walsh University of Calgary, Calgary, AB, Canada Gail E. Whiteford MNCLHD, NSW Health & School of Community Health, Charles Sturt University, Port Macquarie, NSW, Australia Whiteford Consulting, Lake Macquarie, Australia Elaine C. Wiersma Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada Catherine Wilkinson School of Education, Liverpool John Moores University, Liverpool, UK Samantha Wilkinson School of Childhood, Youth and Education Studies, Manchester Metropolitan University, Manchester, UK Robyn Williams College of Indigenous Futures, Arts & Society, Charles Darwin University, Darwin, NT, Australia Nathan J. Wilson School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia Nancy P. Wingo School of Nursing, The University of Alabama at Birmingham, Birmingham, AL, USA Tom Wood Neami National, Preston, VIC, Australia Ryan Woolrych The Urban Institute, Heriot Watt University, Edinburgh, UK Alex Workman School of Health Sciences, Translational Health Research Institute, Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Penrith, NSW, Australia Laura H. V. Wright International Institute for Child Rights and Development; Terre des hommes, University of Edinburgh; University of British Columbia, Victoria, BC, Canada Chika Yamada Center for Southeast Asian Studies, Kyoto University, Kyoto, Japan Daryl W. J. Yang Yale-NUS College, Singapore, Singapore Min Ok Yang Sun Moon University, Asan, South Korea Sharon Yanicki Faculty of Health Sciences, University of Lethbridge, Lethbridge, AB, Canada Anne Yee Department of Psychological Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia

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Social Inclusion, Research, and Practices in the Health and Social Sciences Setting the Scene Pranee Liamputtong

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 2 Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 3 Social Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 4 Inclusive Research Methodological Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 5 Promoting Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Abstract

Social inclusion emerged as a concept to respond to the increase of socially excluded and marginalized populations in the 1980s and 1990s. It has echoed pragmatics of “social, economic, and political participation” and engagement and can help to create “a sense of belonging” for divergent groups in society. Nowadays, social inclusion is perceived as a social determinant of health and plays an integral role in the promotion of health and well-being, particularly among those who are socially excluded and marginalized in society. The concept of social inclusion is explicitly related to equality, social cohesion, and human rights. The focus of social inclusion is on obstacles that prevent individuals from engaging meaningfully in society. It embraces a positive process rather than focusing on problems and difficulties experienced by people. Social inclusion emphasizes the essence of an inclusive society where people who lack the opportunity to engage in different aspects of society become more socially included. This chapter sets the scene of this handbook. It provides some back-

P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_1

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ground for further chapters in this handbook. First, it discusses the concept of social inclusion. Then it examines the closely linked concept of social exclusion. The next section is dedicated to social inclusive research methodologies that researchers can adopt to ensure greater social inclusion within society. The chapter concludes with discussions about means and strategies for the promotion of social inclusion in society. Keywords

Social inclusion · Social exclusion · Inclusive society · Social determinants · Research methodologies · Promoting social inclusion · Social inclusion programs and systems

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Introduction Belonging, or feeling socially connected to others in a meaningful way, is critical to human functioning. (Claypool & Bernstein, 2019, p. 49)

The focus of this handbook is on social inclusion in the health and social sciences. Social inclusion emerged as a concept to respond to the increase of socially excluded and marginalized populations in the 1980s and 1990s. It echoes pragmatics of “social, economic, and political participation” and engagement and can help to create “a sense of belonging” for divergent groups in society. Nowadays, social inclusion is perceived as a social determinant of health and plays an integral role in the promotion of health and well-being, particularly among those who are socially excluded and marginalized in society (Mamatis et al., 2019, p. 4). The concept of social inclusion is explicitly related to equality, social cohesion, and human rights. The focus of social inclusion is on obstacles that prevent individuals from engaging meaningfully in society. It embraces a positive process rather than focusing on problems and difficulties experienced by people. According to Ronzi et al. (2018, p. 2), the concept of social inclusion is not simply the intended opposite concept of social exclusion. It signifies the opportunity for people to “cultivate social relationships, have access to resources and feel part of the community they live in.” Social inclusion emphasizes the essence of an inclusive society where people who lack the opportunity to engage in different aspects of society become more socially included. This chapter sets the scene of this handbook. It provides some background for further chapters in the volumes. First, it discusses the concept of social inclusion. This is followed by the closely linked concept of social exclusion. The next section is dedicated to social inclusive research methodologies that researchers can adopt to ensure greater social inclusion within society. Finally, it looks at ways and strategies for the promotion of social inclusion in society.

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Social Inclusion

Social inclusion is “a multifaceted construct” (Canas & Staples, 2018, p. 29). The concept embraces both a social and physical state, resulting in “emotional experience, across a spectrum of inclusion/exclusion.” Social inclusion, as defined by Hall et al. (2019, p. 2), embraces “feeling accepted, having an individual and collective agency to determine participation, and the removal of structural and attitudinal barriers to participation.” According to Mlinar et al. (2016, p. 1), social inclusion refers to the “capacity to be actively included in society and contribute to society in an economic, social, psychological, and political sense.” For some, social inclusion is referred to as the “process of improving the ability, opportunity, and dignity of people disadvantaged on the basis of their identity to take part in society” (Tancharoenathien et al., 2018, p. 3). At the macrolevel, social inclusion is linked to access to affordable education, equal employment opportunity, and its legislation, as well as gender and cultural norms. At the microlevels, social inclusion/exclusion is distinct from, but highly associated with, poverty, as well as occupational status, income, and social networks relating to gender, ethnicity/race, and religion. Social inclusion embodies perceptions, expectations, and attitudes about the meaning of belonging to a group. The desire to belong is an acutely inescapable human impulse, and it is so powerful. Belonging signifies “acceptance without judgement, being treated equally and having voice” (Scorgie and Forlin, 2019, p. 5). It focuses on the strengths and abilities of a person instead of their deficiencies (Scorgie and Forlin, 2019). Belonging is crucial for the well-being of individuals (Freedman et al., 2016). Exclusion takes away the feeling of belonging to the group. Freedman (2016, p. 3) suggests that the “threat to belongingness” is seen as the foundation “threat of social exclusion.” Social inclusion stems from the ideal of an inclusive society where each individual feels valued, differences between individuals and their rights are respected, needs of each person are met, and everyone can live with dignity is “the norm” (Mlinar et al., 2016, p.1; Mamatis et al., 2019). An inclusive society is a society in which individuals are able to meaningfully engage in social, cultural, economic, and political structures (Mamatis et al., 2019). Social inclusion helps to explain why some individuals are situated at the center of society or its margins, as well as the consequences of the social layer in society (Mlinar et al., 2016: 1). Social inclusion has also been perceived as a social determinant of health (Louw et al., 2019; Mamatis et al., 2019). Social determinants of health are described by the World Health Organization (CSDH, 2014, p. 1) as “the circumstances in which people grow, live, work, and age, and the systems put in place to deal with illness. The conditions in which people live or die are, in turn, shaped by political, social and economic forces” (see also WHO, 2017). Social determinants of health are created by “the multilevel distribution of money, power, and resources” (Compton & Shim, 2014, p. 4), which are influenced by other factors including social class, gender,

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ethnicity, and geographic locations (Birn et al., 2017; Liamputtong, 2019). This social condition is the most influential foundation for good health or illness. Thus, social determinants can be perceived as “causes of the causes,” that is, as “the foundational determinants which influence other health determinants” (AIHW, 2016: 129; Marmot & Bell, 2016). They are also the root cause of health inequities, the unjust and preventable discrepancies in health status, that are witnessed within and between nations around the globe (Gleeson & Chong, 2019; WHO, 2017). Social inclusion is also seen as a human rights issue (Hall et al., 2019). Human rights are rights which are fundamental to all societies and belong to all individuals in society. Human rights signify that each individual, regardless of gender, culture, ethnicity, religion, age, sexuality, and (dis)ability, has the same basic human rights (Taket, 2019). They are an internationally defined position of principles that can be used to “assess and redress inequality,” as well as to “advocate for, and even enforce, a fairer distribution of resources in the world” (Miles, 2019, p. 110). Historically, there have been two types of human rights: civil and political rights (including freedom of expression, privacy, and life) and social, cultural, and economic rights (such as food, housing, education, and health) (Miles, 2019; Taket, 2019). Considering principles of human rights can increase the effectiveness of attempts to confront social determinants of health, particularly for those who are socially excluded and marginalized. The attainment of human rights is not only a moral and legal obligation of society but is also crucial for the health and well-being of individuals and their communities. Miles (2019, p. 122) contends that a human rights approach draws “attention to the structural causes of health inequities and ensure active participation of those most affected.” Social inclusion is a crucial component of quality of life for many individuals because it increases their sense of belonging and allows them to become contributing members of society (Werner & Hochman, 2017). It has been suggested that social inclusion enhances self-esteem, confidence, mental health, independence, and decision-making capacity that result in better well-being of many people who occupy marginal positions within society (Werner & Hochman, 2017). Research has shown that there is a link between social inclusion and positive influences on health and wellbeing (Mamatis et al., 2019). For young people with intellectual disabilities, social inclusion is seen as a critical determinant of their health. These individuals are perceived to be one of the most marginalized groups in society (Browne & Millar, 2016). They have limited opportunities to develop meaningful social networks with others and are frequently excluded from social engagements and in the workforce. Social inclusion facilitates the ability for these individuals to meaningfully participate in social and economic environments within society (Louw et al., 2019).

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Social Exclusion

Closely related to the concept of social inclusion is social exclusion. Social exclusion is a multifaceted mechanism and is driven by “unequal power relationships” across four key elements – social, cultural, economic, and political (Bullock et al., 2017;

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Taket et al., 2014). It may occur at different levels: the individual, family, community, nation, and global (Meyer et al., 2018). Social exclusion is marked by unequal access to rights, capabilities, and resources and may result in health inequalities. Social exclusion renders some individuals or groups socially vulnerable as it is the “process of marginalising individuals or groups of a particular society and denying them from full participation in social, economic and political activities” (Tancharoenathien et al., 2018, p. 3). Thus, these individuals or communities may be unable to prevent negative circumstances that impact their lives, health, and wellbeing. The concept of social exclusion emerged in France in the 1970s. The term Les exclus (the socially excluded) was used to depict the circumstances of individuals who existed on the margins of society. They were excluded from secured employment as well as the income safety net of the welfare state. According to Pierson (2016, p. 5), “les exclus lacked the substantial rights of les citoyens, either in practice, because they were victims of discrimination, for instance disabled people, or because they were not citizens of the state, such as immigrants.” Several factors work to preclude certain individuals and groups from access to, and use of, health and social services, and from engaging in economic activities and policy development. Social factors such as gender, social class, ethnicity, caste, Indigenous origin, and religion as well as diseases such as tuberculosis and HIV/AIDS, and migration and displacement status and disability, may lead to social exclusion (Brennan-Ing, 2019; Clendon & Munns, 2018; Maximova et al., 2018; Tancharoenathien et al., 2018). Social exclusion has changed the discourse around poverty, deprivation, and inequality. Many researchers, practitioners, and policy-makers have realized that social disadvantage is a multistructural manifestation, encompassing a multitude of circumstances in a person’s life (Abello et al., 2016; Pierson, 2016). Being excluded from participation in social life prevents individuals from attaining their full capacity. For instance, children growing up in a poor household are likely to be at risk of becoming socially excluded from important opportunities such as education and secured employment, which can result in intergenerational poverty. Due to the dominance of Western education and health systems, cultural minority groups are frequently socially excluded from some significant aspects of community life. Individuals belonging to sexually diverse minorities such as gay, lesbian, bisexual, transgender/transsexual, or intersex (LGBTI) groups are at especially high risk of social exclusion. Individuals with disabilities tend to be seen to lack capabilities and are often being excluded from societal participation. This will have profound negative impacts on their health and well-being (Clendon & Munns, 2018). Stigma and discrimination are the core determinants of social exclusion (Hall et al., 2019; Liamputtong and Kitisriworapan, 2019). The foundation of stigma lies in “differences.” These differences can be in physical appearance, personality, age, gender, sexuality, illness, disability, and specific behaviors which evoke discontent, abhorrence, panic, or sympathy from others. Stigma, according to Irving Goffman (1963, p. 3), is a “devaluation” process that is interlinked with stereotyping and prejudice. It is used by individuals to interpret specific traits of others as

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“discreditable or unworthy,” and this results in the person stigmatized becoming “discounted” or “tainted” (Thomas, 2006, p. 3175). Those who are stigmatized will then be “disqualified from full social acceptance” (Goffman, 1963, preface). This eventually leads to discrimination and social exclusion of people. Individuals living with epilepsy frequently encounter stigma associated with the disease (Mlinar et al., 2016). The stigma they experience reduces their social capital, lowers their quality of life, and contributes to higher levels of mental health problems. Clearly, the discrimination and stigmatization these individuals experience are social determinants of ill health and inferior social expectation (Mlinar et al., 2016). Similarly, people living with HIV/AIDS experience a high level of stigma and discrimination in their everyday life (Brennan-Ing, 2019; Liamputtong, 2013a, 2013b). Often, they are socially constructed as the “other” who is “disgracefully different from and threatening to the general public” (Zhou, 2007, p. 2856). Mental illness stigma is a significant health and well-being obstruction among people living with mental illness (Fox et al., 2018). Stigma and discrimination resulting in social exclusion have an immense impact on individuals with mental illness. Stigma and discrimination can lead to poor self-esteem, and disrupt helpseeking attempts and access to health care for people with mental illness. This can constrain their recovery (Hall et al., 2019). Stigma often portrays individuals with mental illness as “dangerous, unpredictable and unintelligent.” These beliefs are produced through “discriminatory and exclusionary behaviour” (Hall et al., 2019, p. 2). In all corners of the world, people living with mental illness are ostracized, blocked from employment, and denied sexual, reproductive, and legal rights to vote (Hall et al., 2019). Certain individuals and groups are often socially excluded from mainstream society. They tend to belong to a marginalized group (Cherayi et al., 2019; Maximova et al., 2018; Wesselmann et al., 2019). These include, for example, homeless persons, prisoners, drug users, sex workers, ethnic minority groups, migrants and refugees, people with mental illness, and members of the LGBTI community (Marmot, 2018). Homeless people and people with mental illness are among the most socially excluded groups. They experience discrimination and exclusion in their everyday lives (Bullock et al., 2017). Ethnic minorities have often been excluded through covert and overt discrimination in access, policy, and regulation (Canas & Staples, 2018; Morville & Jessen-Winge, 2019). Tribal and Indigenous peoples hold lower social status and have limited voice and poor health outcomes (Tancharoenathien et al., 2018). Refugees are often subjected to human rights violations, in the form of sexual abuse (Morville & Jessen-Winge, 2019). In India and Nepal, those who belong to the lowest caste have been subjected to disrespect and indignity for centuries (Tancharoenathien et al., 2018). In India, Cherayi et al. (2019) examined the social exclusion of children of tribal unwed mothers and revealed that these children have poor social integration, experience conflict in their social interactions and lack of social support, and are poorly accepted by peers. Social exclusion characterizes their everyday school and communal life. The repercussions of social exclusion are marked. Often, it renders excluded individuals and groups invisible and voiceless in the society in which they reside.

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The consequences of social exclusion also lead to poverty, low social status, low human capital endowments, restricted access to services and employment, and low social participation (Tancharoenathien et al., 2018). Social exclusion impairs access to opportunity and social support. It carries a loss of dignity and a sense of shame, which can have deep emotional and psychological repercussions (Pierson, 2016). People who have encountered social exclusion may encounter intense emotional and physiological effects because social exclusion can hamper four basic human needs: “belonging, self-identity, control and to live a meaningful existence” (Liddell & Courtney, 2018, p. 2). Often, they exhibit emotional responses such as sadness, shame, embarrassment, and anger. Indeed, many socially excluded people have expressed the feeling of “a threat to their overall perceived humanity” (Wesselmann et al., 2019: 2). Social exclusion can also make people feel like they are socially devalued. They may feel that they are not an important member of society. For individuals who experience chronic exclusion, they may develop acute psychological problems such as feelings of helplessness, alienation, depression, and existential meaninglessness (Riva et al., 2017). Research has suggested that chronic exclusion may lead to self-harm and suicidal ideation (Wesselmann et al., 2019). Individuals who are socially disconnected from others have between two and five times the risk of dying from all causes, compared to people who have strong ties with family, friends, and community (Berkman & Glass, 2000). Those who receive less social and emotional support are more likely to experience depression. The concept of social exclusion has become a focus of politics in several nations. There have been political activities to fight both the causes and consequences of social exclusion. In Europe, the term “social exclusion” echoes an acceptance of the multifaceted nature of social disadvantage and the importance of political agency in addressing social exclusion. Thus, there was the inauguration of the British Social Exclusion Unit (SEU) by the Blair government in 1997. In Australia, when the Rudd Labor government came to power in 2007, social exclusion/inclusion was at the foreground of government policy. Both Federal and state governments enacted Social Inclusion Units. Many Australian policies were aimed at achieving a “socially inclusive society” (Abello et al., 2016, p. 637; see also Pierson, 2016; Fahmy et al., 2018).

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Inclusive Research Methodological Approach Research is carried out to better understand our lives and the lives of others, to extend knowledge, to bring about political or social change. (Salmon et al., 2018, p. 269)

Methodologically, to promote social inclusion and reduce social exclusion, inclusive research methodologies need to be embraced (Williams et al., 2015). Inclusive research is a discursive term that encircles participatory and emancipatory wisdom where individuals who are the center of the research are engaged in its design and conduct (Edwards & Brannelly, 2017). Inclusive research refers to the approach whereby the “research is of concern and benefit to the research participants, reaches and represents their grounded knowledge, and treats them with respect” (Edwards &

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Brannelly, 2017, p. 272; see also Warmsley & Johnson, 2003; Nind, 2014). According to Johnson et al. (2014, p. 83), inclusive research not only can contribute to the knowledge of the issues examined, but it can also “provide a means for people to take power in their own lives.” Importantly, inclusive research “can be used. . . to promote and support change” in society (Johnson et al., 2014, p. 83). The term inclusive research was coined by Jan Walmsley (2001) in her influential work with people with intellectual disabilities. The term inclusive research encompasses both participatory research which signifies that individuals with disabilities “work in partnership with academic researchers,” and emancipatory research which conveys that “the aspiration is for people with disabilities to lead and control the research, changing the relationships of research production” (Strnadová & Walmsley, 2018, p.133). In her later writing with Kelly Johnson (Warmsley & Johnson, 2003), the term inclusive research was used to embrace various research approaches that have traditionally been termed “participatory” or “emancipatory.” They (2003, p. 10) write: Such research involves people who may otherwise be seen as subjects for the research as instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users.

Inclusive research practice arose from the striving for equality in the late twentieth century (Walmsley et al., 2018; Warmsley & Johnson, 2003). It emerged during the rights movement that proclaimed “nothing about us without us.” It was seen as an ultimate channel to push for meaningful social roles for people with intellectual disabilities (Warmsley & Johnson, 2003). Essentially, inclusive research is “valuedriven.” It aims to change society where people with intellectual disabilities become active contributors and partners in research (Strnadová & Walmsley, 2018). Inclusive research sets out to “give voice” to people with intellectual disabilities (Strnadová & Walmsley, 2018; Warmsley & Johnson, 2003). Inclusive research practice emphasizes the sharing of power between academic and research participants who are often referred to as “co-researchers” (Warmsley & Johnson, 2003; see also Salmon et al., 2018; Walmsley et al., 2018). Inclusive research seeks to curtail the inequality of power that shapes traditional research processes and to widen the role of research participants (Novek & Wilkinson, 2019). Melanie Nind (2014, p. 3) suggests that inclusive research can be usefully seen as “research that changes the dynamic between research/researchers and the people who are usually researched.” Inclusive research is conceived as “research with, by or sometimes for them,” and in opposition to “research on them” (original emphasis) (see also Milner & Frawley, 2019). It is a research practice that represents the radical change from research on individuals, to research with them. Inclusive research epitomizes the encouragement to engage individuals in the construct and management of research “about them, reach and represent their lived experience, respect them and value different ways of knowing” (Nind, 2017, p. 278). Inclusive research is suitable for exploring perspectives that are based on the lived experience of individuals (Nind, 2017; Nind & Vinha, 2012). Inclusive research

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practice, thus, shares commonalities with the qualitative inquiry, particularly the concern with grounding research in the lived experience of research participants (Clendon & Munns, 2018; Novek & Wilkinson, 2019). Importantly, Novek and Wilkinson (2019, p. 1056) suggest that participating in qualitative research can “contribute to the well-being and social inclusion” of the research participants. According to Melanie Nind (2014, p. 1), inclusive research includes a number of research methods and approaches that include “participatory, emancipatory, partnership and user-led research – even peer research, community research, activist scholarship, decolonizing or indigenous research.” Research approaches such as collaborative research, participatory research (PR), and community-based participatory action research (CBPR) have also been referred to as inclusive research methodologies. Nind (2014) suggests that inclusive research can alternatively be perceived as collaborative research or participatory research, participatory action research (PAR), and community-based participatory research (CBPR). From the discussions above, inclusive research can be seen as comprising a few salient components, and these include collaborative research, participatory research, and PAR and CBPR as presented in Figure 1. Nind (2014) suggests that the term inclusive research can be adopted across disciplines and research fields within the paradigm of social inclusion (see also Clendon & Munns, 2018; Frankena et al., 2019; Novek & Wilkinson, 2019). According to Walmsley (2004, p. 69), “inclusion can, quite appropriately, take different forms,” and there is no single “right way to approach inclusive research.” This handbook also includes inclusive research methodologies and examples used in health and social sciences. However, as the Handbook includes examples Fig. 1 Proposed components of inclusive research

Participatory Research Collaborative Research

CommunityBased Participatory Research & Participatory Action Research

Inclusive Research

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of research that promotes social inclusion in areas beyond the intellectual disability field, the term (borrowing from Nind & Vinha, 2014 and Nind, 2017) “doing research inclusively” will be used in this handbook.

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Promoting Social Inclusion The challenge is to bring socially excluded populations in from the cold literally and metaphorically and to provide them with the opportunity to be part of a diverse and flourishing society. (Marmot, 2018, p. 186)

Addressing the dilemma of social exclusion is an acknowledged ethical and moral antecedence around the globe (Canas & Staples, 2018). Dealing with social exclusion, often through promoting social inclusion, is a global challenge for all societies (Schaillée et al., 2019). The reduction of social exclusion can be achieved by planning for and achieving social inclusion. There are some markers of inclusion to benchmark progress. These include freedom from fear and violence, freedom from stigmatization, and access to knowledge, resources, health, and social care (Canas & Staples, 2018). There are programs and interventions that can enhance social inclusion in socially excluded groups. Arguably, in order to promote cohesion and equity in communities and nations, health and social service practitioners and policy-makers need to implement strategies that can overcome social exclusion (Clendon & Munns, 2018). At a very simple level, social inclusion can be achieved through collaboration, provision of resources, and respecting social and cultural differences (Morville & Jessen-Winge, 2019). Many programs have been developed to promote more social inclusion in society. For example, Bould et al. (2018) developed a supported dog-walking program to assist people with intellectual disabilities interact with others in the community. The authors reported greater confidence in social exchanges among these individuals. Hall et al. (2019) argue that promoting social inclusion of people with mental illness is an intrinsic aim of human rights and global mental health for achieving people-centered mental health care. Interventions to promote social inclusion aim to reduce the consequences of attitudinal, behavioral, and structural forces of social exclusion (Hall et al., 2019). In many developed nations, the social inclusion of people with mental illness has been endorsed through community-based mental health, housing and employment services, antistigma activities, and legislative protections. People living with dementia as well as their caregivers frequently confront obstacles to social inclusion. Addressing social exclusion necessitates attentive consideration to establishing accessible, affordable, and nonstigmatizing programs that enhance social inclusion within household, community, and institutional care settings. Skinner et al. (2018) contend that arts-based health programs including painting, music, and dance can assist in the improvement of the emotional, physical, and neurological well-being and health of people living with dementia. These programs can also provide opportunities for cultivating greater social support networks

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(Skinner et al., 2018). According to Skinner et al. (2018, p. 2), dance deserves great attention for social inclusion among people living with dementia because it can help these individuals gain access to more opportunities for expressing their emotions, thoughts, and memories, as well as interacting with others. Dance, depending on its mode, can offer a means for physical connection. Accordingly, “dance programs support the expressive capabilities of people living with dementia, which frequently are undermined by discourses that focus on the cognitive decline associated with dementia and fail to consider the body’s power of expression” (Skinner et al., 2018, p. 2). Thus, dance programs are particularly suitable for enhancing social connections among people living with dementia despite the social challenges resulting from their conditions. At a community level, sport is often perceived as “an inclusive environment” in which individuals from all abilities and backgrounds can take part. Sport can result in many personal, social, and health benefits (Schaillée et al., 2019, p. 885). Particularly, community sport initiatives are more informal and hence accessible and affordable to local people. Often, they are locally focused initiatives and need modest budgets to run. They are more than “just” sport programs in the community. Often, community sports aim to challenge social, cultural, and political inequality (Schaillée et al., 2019). At a societal and global level, social inclusion can be enhanced by the social justice framework. As social inequalities are the consequence of social exclusion, they can be addressed through the concept of social justice (Commission on Social Determinants of Health, 2014; Miles, 2019). Social justice refers to “systemic and structural social arrangements that improve equality and include the fair distribution of resources, equal access to opportunities and rights, and protection of the marginalised and vulnerable” (Miles, 2019: Taket, 2019). As social inclusion is a social determinant of health equity, attaining equity is thus social justice. Structural determinants of social inclusion, including employment and education, are accommodating to the sustainable improvement of social exclusion. Globalization has led to social exclusion in many nations around the globe. Despite its intention of benefiting society, globalization has instead generated social inequality and stress within different segments of society. Social exclusion can be combated through the provision of equal opportunities for education and access to work and employment to all marginalized people of society. This would help to change the social structure and allow marginalized people to achieve desirable outcomes (Nagla, 2014). In global public health, it has been generally accepted that social justice approaches to health are essential. People have the right to achieve good health outcomes (Commission on Social Determinants of Health, 2014; Miles, 2019). According to Turnock (2016, p. 19), social justice is the “foundation” of global health. Social justice suggests that global public health is essentially “a public matter.” The consequences of social injustice by means of ill health, disease, and death are the reflection of “the decisions and actions that a society makes, for good or for ill.” Social justice means that there is an equitable distribution of benefits and burdens among people. Social injustices happen when some burden is unwarrantedly

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placed on some individuals and groups and they lack access to some benefit to which they are entitled. Turnock (2016, p. 19) contends that “if access to health services, or even health itself, is considered to be a societal benefit (or if poor health is considered to be a burden), the links between the concepts of justice and public health become clear.” The recently emerging concept of “inclusion health” deserves a mention here. Inclusion health refers to an approach that challenges extreme social and health inequities among groups who share disadvantageous lived experiences and risk factors such as trauma, violence, and poverty that result in social exclusion (Fitzpatrick et al., 2012). Thus, these individuals experience extremely poor health, multiple morbidities, and early death (Aldridge et al., 2017; Luchenski et al., 2018, p. 266). In combination with these problems, they also experience difficulties accessing health and social care (Elwell-Sutton et al., 2017). According to Luchenski et al. (2018, p. 266), the key aims of the inclusion health approach are “to highlight the magnitude and consequences of extreme inequity, the need for preventive and early intervention approaches, and improved access to essential services for individuals harmed by exclusion.” Examples of inclusion health approaches are peer and community-led programs that embrace social capital to promote social and health inclusion. Some programs emphasize peer-mentoring within marginalized groups; others work with peer workers to promote changes in health-related lifestyle, improve access to health and social care programs, or promote community capacity through the development of affiliations that respond to the needs of the community. Reducing health and social inequalities in the globe has been a strategy of the Sustainable Development Goals (SDGs) that calls for an attempt to “leave no-one behind,” regardless of their sociocultural, economic, and political status (United Nations General Assembly, 2015). These goals can be adopted to enhance social inclusion in societies. There are several goals that are relevant to the promotion of social inclusion, and these are presented in Figure 2. As evidenced, health equity can be achieved by improving health care. For instance, the Universal Health Coverage (UHC) for all is a strategy for ensuring health equity within and between nations (United Nations General Assembly, 2015; Wickramage et al., 2018). This is reflected in SDG Goal 3.8 which aspires to “achieve universal health coverage (UHC), including financial risk protection, access to quality essential health care services, and access to safe, effective, quality, and affordable essential medicines and vaccines for all” (United Nations General Assembly, 2015, p. 16). To achieve UHC, the nation will need to pay greater attention to the broader aim of health equity and the strengthening of health care systems. Thus, no one will be left behind.

6

Conclusion and Future Directions

As seen in this chapter, social exclusion has a great impact on the lives, health, and well-being of many individuals and communities around the globe. Social exclusion has led to many social and health inequalities in the world. There are millions of

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Social Inclusion, Research, and Practices in the Health and Social Sciences

Goal 1

Goal 3

Goal 4

Goal 5

Goal 8

Goal 10

Goal 11

Goal 16

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•End all forms of poverty in the globe

•Ensure healthy lives and promoting well-being at all ages for all

•Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all

•Achieve gender inequality and empower all girls and women •Promote inclusive and sustainable economic growth, full and productive employment and proper work for all •Reduce inequality within and among nations

•Make cities and human settlements inclusive, safe, resilient and sustainable •Promote peaceful and inclusive societies for sustainable development, provide access to justice for all, and build affective, accountable and inclusive institutions at all levels

Fig. 2 Sustainable Development Goals

people who are still socially excluded in societies. Social inclusion for all needs to be addressed. In discussing health inequalities in the world, Sir Michael Marmot (2018, p. 188) remarks that “we need the involvement of society as a whole to tackle the causes of the causes of social exclusion and its dramatic health consequences.” He suggests that not only is this “the right thing” to do, but it might also “save money” of the nation and the world. As health is just one aspect of social inclusion, his argument can be extended to all social inequalities witnessed. The Handbook covers a wide range of issues about the social exclusion/inclusion paradigm. These include the theoretical frameworks that social inclusion can be situated within, research methodologies and ethical consideration, research methods which enhance social inclusion (PAR and inclusive research methods), issues and research that promote social inclusion in different communities/individuals, and programs and interventions that would lead to more social inclusion in society. The reader or user of this handbook will learn about concepts of social inclusion/ exclusion and theories relating to social inclusion/exclusion. The reader will also learn about research methodologies and programs/interventions that can enhance social inclusion in different population groups. As examples from the research will be included in this handbook, the reader will be able to see real-life situations that can promote social inclusion in different groups that can be adopted in their own work. A good understanding of the variables that can lead to the inclusion or exclusion of people in society should lead to more sensitive health and social care for vulnerable and marginalized groups. This should ultimately move the dial closer toward no one being left behind in society, resulting in more just societies around the globe. This will result in a more just society around the globe.

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Part I Toward Social Inclusion in Research and Practices: Theoretical Backgrounds

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Social Inclusion and Social Determinants of Health Rayner Kay Jin Tan

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Emergence of Social Determinants of Health as a Guiding Framework . . . . . . . . . . . . . . . 3 Conceptualizing and Measuring Social Inclusion as a Social Determinant of Health . . . . . . 3.1 Conceptualizing Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Social Inclusion at the Individual Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Social Inclusion at the Network or Group Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Social Inclusion at the Systems Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Inclusion Matters: Social Inclusion as a Determinant of Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Individual Level Social Inclusion and Health Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Network or Group Level Social Inclusion and Health Outcomes . . . . . . . . . . . . . . . . . . . . . 4.3 Systems Level Social Inclusion and Health Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

22 23 25 25 26 30 31 32 33 34 35 35 37

Abstract

There has been renewed enthusiasm over the role of social determinants in impacting health and illness outcomes in the past few decades. While there is unequivocal evidence illustrating how measures of social inclusion interact with health and illness outcomes, the ways in which social inclusion is conceptualized, operationalized, and thus measured are increasingly varied. How then can such emerging work be situated in social determinants of health framework? This chapter begins by charting a brief history of epidemiology and its evolution toward its focus on social determinants of health at the turn of the century; it proposes competing lenses and frameworks to better situate social determinants of health framework that will be utilized in the discussion of social inclusion; it proceeds to review how social inclusion has and can been measured, and its implications for health at varying levels; and it concludes with a commentary on R. K. J. Tan (*) University of North Carolina Project China, Guangzhou, China e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_2

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the path forward for research on social inclusion within social determinants of health framework, and the implications that this may have on the communities most affected by issues of social inclusion. Keywords

Social epidemiology · Public health · Social exclusion · Health outcomes · Health disparity · Health determinants

1

Introduction

While social factors have been long acknowledged as determinants of health and illness, the phrase “social determinants of health” has gained renewed interest over the last two decades in the fields of global and population health, in part spearheaded by World Health Organization’s Commission on Social Determinants of Health (WHO CSDH). The commission was established in March 2005 by Dr. Lee JongWook, then secretary-general of the WHO, chaired by Sir Michael Marmot, and comprised a global network of policy makers, researchers, and civil society organizations. The CSDH was established as part of the organization’s efforts to “gather and review evidence on what needs to be done to reduce health inequalities within and between countries and to report its recommendations for action to the DirectorGeneral of WHO” (World Health Organization 2020, p. 1). The key social determinants identified by the commission spanned across three key dimensions: first, socioeconomic and political contexts comprising a nation’s governance, policies, and sociocultural norms; second, one’s own socioeconomic position within a community as determined by one’s social class, gender, race, educational attainment, occupation, and income level; and third, individual level attributes such as one’s material circumstances, psychosocial factors, behaviors, biological factors, and social cohesion. These factors interact with each other, as well as within health systems, to impact equity on health and well-being for an individual (CSDH 2008; Solar and Irwin 2010). The resulting conceptual framework is an action-oriented framework that places emphasis on how interventions may seek to improve health outcomes through policies that address social determinants of health. Other supranational efforts have also increasingly focused on outcomes that address these social determinants of health, such as the Millenium Development Goals (MDGs) and Sustainable Development Goals (SDGs). The MDGs were developed in the year 2000 at the Millenium Summit of the United Nations and were a set of eight broad goals comprising 21 targets for all countries to achieve by the year 2015; these were replaced in 2016 by the SDG, which were a set of 21 goals and 169 targets that not just carried forward the objectives that the MDGs had set, but expanded on many goals to address issues of equity, social justice, and human rights (United Nations 2020). For example, the targets in the SDGs specifically addressed the need for equitable outcomes especially among vulnerable populations such as children, the elderly, people with disabilities, refugees, and migrants (Kumar et al. 2016).

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While “social inclusion” as a concept is not explicitly stated in both the CSDH and SDG frameworks, it features strongly as mechanisms in both to impact ultimately on health and well-being. Specifically, it is conceptualized as a cross-cutting and intermediary determinant in the CSDH framework that cuts across structural and intermediary determinants, while as a lens or imperative to address the gaps in health inequity across multiple SDGs. However, what happens when social inclusion is taken as the starting point and social determinant for health outcomes, instead of viewing it simply as a mechanism or intermediate variable? To do so, how would “social inclusion” be conceptualized and operationalized so as to begin appreciating its link to health outcomes in a wide variety of communities and individuals they comprise? These are important questions today as more empiric evidence points toward the role of social inclusion as a fundamental cause of health and illness. This chapter begins by expounding on the social determinants of health, as a guiding framework for the framing of health outcomes, and reviews how social inclusion has been conceptualized or operationalized as a determinant of health at varying levels. It then explores why this matters by illustrating how social inclusion can fundamentally affect a variety of health outcomes, and it ends by suggesting a framework for action, intervention, and future research.

2

The Emergence of Social Determinants of Health as a Guiding Framework

The social determinants of health framework provide a useful lens that frames social inclusion as a key variable or factor that may directly or indirectly impact health and illness in individuals. To better appreciate the salience of this framework, this section will briefly detail how epidemiology, or the distribution of health and illness in a population, has evolved over the centuries, culminating today in what is seen as a rapidly growing and emerging field of social epidemiology and the social determinants of health. While concerns around public health and disparities in mortality across society have existed long before the formal study of epidemiology, Susser and Susser (1996a, b) propose that modern epidemiology had only taken shape since the sanitary movement of the nineteenth century. They further delineate four distinct eras of epidemiology that have taken shape since then. First, the era of sanitary statistics in the first half of the nineteenth century was characterized by prevailing theories of Miasma, or in other words “bad air,” or foul emanations from the environment as the main sources of morbidity and mortality. Second, the era of infectious disease epidemiology, in the late nineteenth century through the first half of the twentieth century, characterized by germ theory, when infection by organisms was thought to be the major cause of disease. Third, the era of chronic disease epidemiology, in the latter half of the twentieth century, was characterized by a black box paradigm in which risk factors for diseases were established, but not necessarily establishing intervening factors or pathogenesis. Finally, the forth era eco-epidemiology that was emerging in the late twentieth century is extremely relevant today; this was characterized by endeavors to

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understand the relations within and between variables at multiple levels that ultimately impact health and illness. Notwithstanding the exceptions that undoubtedly existed within each “era,” this approach is useful in illustrating how the shift took place across paradigms and lenses in the understandings of how health and illness are distributed across, and within communities or populations. Eco-epidemiology, so labeled by Susser and Susser, is a paradigm that aligns closely with the approach that the social determinants of health framework employ in that it addresses not only how a factor directly impacts health and illness outcomes, but also its interaction with other dimensions of political, psychosocial, and biological factors through which it indirectly does so. It is also important to note that this biomedically centric view also reflects power dynamics within the field of public health that privileges positivist forms of science and physician-driven biomedical knowledge, as the awareness of the relationship between one’s social standing, living conditions, and health outcomes was evident back in the nineteenth century . The increasing focus and concern around the social determinants of health today was preceded by several key movements that sought to reduce health inequalities within and across countries, including the rise of community-based approaches in the 1960s–1970s, the Report of the Working Group on Inequalities in Health commissioned in Great Britain in the late 1970s, and the increasing influence of the WHO from the 1990s (Irwin and Scali 2007). This historical backdrop had set the stage for further conceptual discussions of the social determinants of health, and various scholars have proposed complementary ways of operationalizing, conceptualizing, and analyzing social factors in the context of health outcomes. For example, Link and Phelan (1995) were proponents of the fundamental cause theory, which argued that most research has focused on “proximal” causes and risk factors of health and illness outcomes, such as diet and physical activitiy. However, they question this emphasis on such individually based risk factors as this undermines the social conditions that place an individual “at risk of being at risk”; as such, they argued that social factors such as socioeconomic status and social support should be seen as “fundamental causes” of disease as they determine one’s access to resources and impact the mechanisms that drive disease incidence and severity. Another framework that followed soon after was the emerging field of social epidemiology that was pioneered by the writings of Berkman and Kawachi, and later on together with Glymour (Berkman et al. 2015) which also concerned itself with the study of social factors, but with its main assumption being that each society forms its own distribution of health and disease, and that the distribution of health and disease in a society reflects the distribution of advantages and disadvantages in that society. This paradigm focused largely on social phenomena and how the distribution of factors such as socioeconomic status, income levels, working conditions, social networks, and discrimination has an effect on health inequalities in society. More recently, the conceptual framework on the social determinants of health by the WHO identified key social factors that served as determinants of health and illness outcomes and also incorporated dynamism in the model to illustrate how these factors may interact with each other (CSDH 2008; Solar and Irwin 2010). While there are many more frameworks through which social factors can be viewed as impacting health and illness outcomes directly, or indirectly, these

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complementary frameworks that were cited briefly highlight the heterogeneity in the approach to the social determinants of health. For the purposes of this chapter, they allow to appreciate how social inclusion may be treated as an object or subject of investigation, and this chapter illustrates how empiric investigations of the role of social inclusion in health may be situated in these frameworks.

3

Conceptualizing and Measuring Social Inclusion as a Social Determinant of Health

What exactly is social inclusion, and how can it be conceptualized? The ways in which social inclusion is conceptualized will undoubtedly have implications for the means through which it is operationalized, and thus measured at different levels. This section begins by introducing several conceptualizations of “social inclusion” and dives deeper into how these have been operationalized at varying levels of measurement – specifically from the individual or egocentric level, at the community level, and at the level of institutions.

3.1

Conceptualizing Social Inclusion

The conceptualization, operationalization, and measurement of social inclusion have been widely debated and are not straightforward processes, owing to competing theoretical and sociopolitical bases. These debates have been characterized by competing definitions of social inclusion, which have often been contrasted with the historically rooted concept of “social exclusion.” Discourse around social exclusion began to gain prominence in the 1960s, as it was aligned with the political ideologies of Republicanism in France that argued for the idea of a social contract, or in other words, a relationship of reciprocity between the state or society and its people (Silver 1994). The origins of the phrase “social exclusion” have largely been attributed to René Lenoir, the then French secretary of state, who published Les Exclus, translating loosely and referring to “the excluded” groups of individuals, including those living in poverty, with disabilities, who suffer from substance misuse, who have been incarcerated, and who have largely experienced limits to social protection in France (Levitas 2006). Overall, tackling social exclusion became a goal of policy makers across Europe in the 1980s, Britain in the 1990s, and Australia from the 2000s (Cordier et al. 2017) and has solidified its position as a key social determinant of health and developmental goal across varying supranational committees. Overall, the concept of social exclusion has evolved from its socialist roots, stemming from poverty and the lack of social protections from the state, to a broader concept that is characterized by one’s exclusion from economic, social, and cultural spheres of life (Cordier et al. 2017). While it may be tempting to conceptualize or define social inclusion a state that is diametrically opposed to being socially excluded, or a process of identifying and tackling social exclusion, scholars have argued against defining social inclusion as a direct antonym of social exclusion. This is because the agents, motivations, and

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mechanism that characterize social inclusion and exclusion differ between them both, and that the motivations for social inclusion should extend beyond the defining features of social exclusion (Silver 2010), which has been largely and traditionally characterized by policy makers and developmental committees as the lack of state protections, employment, housing, and other material conditions. Tensions around the differing definitions of both terms have produced several working definitions to differentiate them both, including viewing social exclusion as a means of defining social problems, while social inclusion may be viewed as a means of addressing social membership (Kohli and Woodward 2004). In spite of these tensions, contemporary definitions, such as that of the World Bank, have begun to acknowlege the relationship between both, and to define and address social inclusion as a process characterized by an increased participation of individuals in all aspects of social life, specifically the processes of “improving the terms for individuals and groups to take part in society,” and “improving the ability, opportunity, and dignity of those disadvantaged on the basis of their identity to take part in society” (World Bank 2020, para. 9). An added dimension of complexity and murk in the conceptualization of social inclusion is its overlap with the rapidly emerging literature on social capital. Social capital, as Kawachi, Subramaniam, and Kim have detailed in their book Social Capital and Health (Kawachi et al. 2008), comprises two distinct conceptions, one of which is the “social cohesion” school of social capital, where it is conceptualized as the resources available to members or citizens of a social group or society and as a property that exists at the group level. The other is the “network” theory of social capital that is conceptualized as the resources that are embedded within an individual’s social networks, and thus take into account an individual’s access to those resources. These conceptions of social capital have overlaps with the concept of social inclusion, especially with regard to aspects of social inclusion that have been conceptualized as an individual’s ability to participate in various aspects of social life. In sum, while there has yet to be an unequivocal consensus around the definitions of social exclusion and inclusion, there is a clear shift in the ways they are framed. This chapter highlights the differing conceptualizations around “social inclusion” and takes a more inclusive approach to defining social inclusion by not only including a more narrow operationalization of social inclusion as one’s access to material conditions (i.e., the approach that is more the logical antonym of social exclusion), but also incorporating a broader view that addresses issues of social participation, connectedness and a sense of belonging, and citizenship and rights, which have been identified as three overarching tropes in how social inclusion has been measured by scholars (Cordier et al. 2017).

3.2

Social Inclusion at the Individual Level

Past studies have indicated and highlighted how social inclusion may be conceptualized and measured from an egocentric, or person-centered perspective. Most measures of social inclusion have taken this approach as it appropriately captures

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the dynamism and context-specific nature of social inclusion, as experienced or reported by individuals themselves. A scoping review conducted by Coombs et al. (2013) to source for candidate measures of social inclusion at a population level identified ten separate measures of social inclusion. A separate systematic review by Cordier et al. (2017) that sought to evaluate the psychometric properties of social inclusion measures and identified 17 social inclusion measures, which largely included the ones identified previously by Coombs and colleagues. The list of social inclusion measures that have been identified across both studies may be found in Table 1.

Table 1 List of individual level social inclusion measures from reviews conducted by Coombs et al. (2013) and Cordier et al. (2017) Scale name Activity and participation questionnaire (APQ6) Australian community participation questionnaire (ACPQ) Bonding social capital Brief sense of community scale Community participation domains measure (CPDM) Composite measure of social inclusion (CMSI) EMILIA project questionnaire (EPQ) Evaluating social inclusion questionnaire (ESIQ) Guernsey community participation and leisure assessment (GCPLA) Internet social capital scales (ISCS) Inclusion web (IW) Mental health day services and social inclusion questionnaire Personal social capital scale English version (PSCS E) Psychological sense of community scale (PSCS) Sense of community index (SCI) Social capital and cohesion scale (SCCS) Social capital questionnaire (SCQ) Social capital questionnaire revised (SCQ R) Social capital scale Social connectedness scale Social connectedness scale revised Social and community opportunities profile (SCOPE) Social inclusion after transfer (SIT instrument) Social inclusion questionnaire user experience (SInQUE) Social inclusion scale (SIS) Social inclusion scale (SIS) Social participation questionnaire (SPQ) Staff survey of social inclusion (SSSI)

Reference Stewart et al. (2010) Berry et al. (2007) Brisson and Usher (2007) Peterson et al. (2008) Chang et al. (2016) Lloyd et al. (2008) Ramon et al. (2009) Stickley and Shaw (2006) Baker (2000) Williams (2017) Hacking and Bates (2008) Marino Francis and Worrall Davies (2010) Archuleta and Miller (2011) Jason et al. (2015) Stevens et al. (2011) Magson et al. (2014) Onyx and Bullen (2000) O’Brien et al. (2004) Looman (2006) Lee and Robbins (1995) Lee et al. (2001) Huxley et al. (2012) de Greef et al. (2010) Mezey et al. (2013) Secker et al. (2009) Wilson and Secker (2015) Densley et al. (2013) Dorer et al. (2009)

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This series of measures comprises largely survey indices and questionnaires, some of which are self-administered, others interview-administered, and with one identified as providing structured qualitative interview questions, namely the EMILIA Project Questionnaire (EPQ). The ten social inclusion measures identified by Coombs et al. (2013) included subjective measures of social inclusion, such as participants’ perceptions of the quality of social relationships, a sense of community, feelings of acceptance, housing security, access to mental health services, and alongside objective measures such as time spent on given activities, as well as frequency of participation in social activities. Cordier et al. (2017) sought to broadly categorize these factors of social inclusion and identified three broad domains of social inclusion that their selected scales covered. The first domain identified was participation, which involved an individual’s involvement in economic, social, and spiritual domains of social life. The authors argue that broadly speaking, participation has previously been identified as an important aspect of social inclusion, as those who are typically excluded due to stigma, social class, or poverty and have reduced opportunities to participate in different aspects of social life. These include economic participation which may include measures of employment, education, and training; social participation with measures of objective participation in community organizations, volunteer work, care for families etc.; and spiritual participation with measures that indicate participation in activities of worship with others who have same similar beliefs or religions. The second domain identified was that of connectedness and a sense of belong ing, which relate to relationships with social groups and feelings of connectedness or emotional attachment. Cordier and collegues argue that connectedness “identifies social norms within a group that may provide strong motivation to remain connected” (Cordier et al. 2017, p. 28), whereas belongingness adds an emotional aspect to this sense of connectedness, as it may be possible to be connected, but not emotionally attached. Measures of this second domain included both objective and subject measures around one’s involvement in community groups or organizations, the diversity of one’s social networks, as well as one’s sense of belonging and connectedness to the wider community. The third domain identified was the concept of citizenship, which implies the expectations of rights and obligations based on one’s own membership in a given society or community. Given that one’s citizenship is defined based on the extent through which an individual may exercise their rights to access or provide resources, factors within this domain measure an invidual’s levels of political activism, community engagement, and acts of altruism, as well as access to community services. Overall, both reviews argue that no single measure of social inclusion identified has successfully captured all factors that are conceptually relevant to “social inclusion,” but provide a means to work toward a gold standard measure in the near future, as the definition of social inclusion is continuously refined and the ways in which varying domains or subdomains are measured that capture its conceptualization. These constructs of social inclusion also do overlap conceptually with measures of individual-level social capital as well, which has been defined as a complex, latent

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construct from which social relationships, access to social resources, and patterns of relationships with other network members may be inferred (Van Der Gaag and Webber 2008). Social capital, in turn, may then be measured at either the individual or the group level, of which the former will be covered in detail for this section. At the individual level, social capital may typically be conceptualized and measured either through the “social cohesion” approach, where questionnaires are fielded directly to participants comprising constructs and measures that have already been included in the list of indices covered in Table 1 such as “bonding social capital,” or they can be measured through the “network” approach. The network approach differs from the earlier “social cohesion”-type measures in that it views social capital through an individual’s position, and thus access to resources within a given network, and relies on measures that are conceptualized and operationalized at both the egocentric and sociometric levels; egocentric network measures take the individual (or “ego”) as the focal point in the context of varying roles or relationships (or “ties” with others), while sociometric measures serve as indicators of whole networks. In what ways do such measures of social capital enrich the understanding of how one may measure social inclusion at the individual level? First, egocentric indicators of social capital may be measured based on functional qualities of those ties and a small structural component that considers an individual’s linkages with the wider network, while sociometric indicators may rely on positional measures that highlight an individual’s relative position within a network, as well as the structural relationship between those ties. With regard to the functional quality of the ties between the ego and other individuals in the network, Lakon et al. (2008) propose three ways in which it may be measured: first, through the strength of the tie, often depicted as a magnitude of a certain quality of the tie; these include levels of social support, amount of time spend, amount of resources exchanged, etc.; second, through the heterogeneity of the network, which measures the diversity of the invidividuals to whom the ego is connected to, by characteristics such as demographic factors; and third, through the compositional quality of the ties, which measures the number of individuals to whom the ego is connected to who possess characteristics of perceived importance to the ego. The structural aspect of egocentric measures also takes into account the measure of network size of an individual, which is defined as the number of individuals that a given individual is directly connected to. On the other hand, sociometric positional measures of social capital that are measured at the individual level focus largely on the relative location of individuals in a network, rather than the function of the ties that an individual has with others within the same network. Measures include degree centrality, which measures the connectivity of an individual within a network, betweenness centrality, which measures the magnitude to which an individual lies on the shortest paths linking other individuals, closeness centrality, which measures the distance between an actor to other individuals, and eigenvector centrality, which measures how connected an individual is to others who are well connected within the network. Overall, these sociometric positional measures conribute to the conceptualization of social

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inclusion as they help to better understand how an individual may be isolated or connected within a wider community through both qualitative and quantitative dimensions.

3.3

Social Inclusion at the Network or Group Level

While the reviews highlighted in the previous section provide a comprehensive overview of the individual level measures, as well as the conceptual domains that they broadly cover, other scholars have also proposed other ways and means of operationalizing social inclusion beyond the level of individual measurement. Apart for group-level characteristics that speak to the qualitative environment or contexts that groups of individuals experience, such as the socioeconomic contexts or given communities or the vulnerability of communities to stigma, the “network” approach to social capital, as mentioned in an earlier section on how social incusion may be conceptualized, may be useful for the measurement of various group-level characteristics. This has been covered briefly in the discussion of sociometric positional measures of social capital and has provided substantial contributions to the understanding of community-level or group-level measurements of social capital, and thus social inclusion. Groups of individuals, which may be defined by a shared identity or perhaps a shared built environment, may also reflect certain characteristics that would normally be measured at the individual level. These may include characteristics that reflect more qualitative aspects of social life, such as group-level socioeconomic status, living conditions, access to sanitation, air quality, or social conditions relative to other groups or institutions, such as vulnerabilities that result from a shared, stigmatized status. For example, neighborhood characteristics have been a useful measure for multiple studies looking at the role that certain living conditions play in limiting or facilitating access to healthcare or health-promoting behaviors (Mohnen et al. 2019). Likewise, group identities, such as sexual orientation and race, reflect how individuals with minority statuses are subject to dynamics that serve as barriers to social inclusion at multiple levels of health and well-being (Meyer 2003). As highlighted briefly in the previous section, Lakon et al. (2008) discuss how social capital may be measured through both egocentric and sociometric network measures, and this section focuses on the latter. Specifically, the functional component of egocentric measures and the positional measures of social capital have largely aligned with measures of social inclusion at the individual level, and now the focus is turned to the structural components of both egocentric and sociometric measures of social capital. The previous section has briefly covered the structural component of egocentric social capital, but with a focus on an individual’s network size. But another aspect of the structural component takes into account the density of a given network, which is defined as the proportion of the number of pairs of individuals who know each other among all possible pairs or ties that could be formed within a network. This conceptualization of social capital moves beyond an individual measure of social inclusion toward a more community or organizational

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level as the network structure is considered, and how the social environment may tie into how social inclusion may be perceived by an individual. Sociometric structural measures of social capital include measures of centrali zation, which measures the variability of individual-level values of centrality within a network. Unlike centrality, an individual-level measure of social capital, this measure characterizes the network or community itself. This ties into social inclusion as a highly centralized network or community would indicate that only few individuals serve as information brokers (i.e., high centralization and variability of degree centrality measures), and thus the nature in which opportunities for an individual to access economic, social, and political resources may be hampered.

3.4

Social Inclusion at the Systems Level

There are many systems-level and national indicators that suggest a lack of social inclusion, and these include measures that have typically aligned with broad, supranational goals, such as those reflected in the MDGs and SDGs. However, several frameworks have introduced more ways and means through which levels of social inclusion may conceptualized, operationalized, and thus measured at the systems or national level. These have typically been based on the “classic” approach of targeting those who have been socially excluded with respect to their material conditions and participation in economic life, as well as more contemporary approaches that focus on social membership and citizenship. The Department of Economic and Social Affairs (DESA), at the United Nations, launched a report in 2010 titled “Analysing and Measuring Social Inclusion in a Global Context” to serve as a guide for policy makers to define, and construct, appropriate measures and indicators of social exclusion at the national level. The committee had defined social inclusion as “the process by which societies combat poverty and social exclusion” (United Nations Department of Economic and Social Affairs 2010, p. 1), and correspondingly, the report had largely focused on measures of poverty and social exclusion, and the importance of doing so to ensure social inclusion. Nonetheless, the report had recognized the evolving ways in which poverty has been framed, from one of lacking in economic resources, toward a definition that acknowledges individuals who may not have access to healthcare, education, housing, the labor market, and a more multidimensional nature that accounts for access to “justice, housing, civil rights, security, well-being, information and communications, mobility, social and political participation, leisure and culture” (United Nations Department of Economic and Social Affairs 2010, p. 7). The SDGs introduced in 2016 have also explicitly focused on the ways in which social inclusion can be conceptualized across its proposed domains and thus also have implications for the ways in which it may be measured at a systems or national level. For example, its focus on ending poverty, ending hunger, and ensuring healthy lives and the promotion of well-being for all in its goals 1–3 allow us to appreciate how measures of absolute and relative poverty, food insecurity, and healthcare access serve as important measures of social inclusion at a broader level.

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Furthermore, its focus on gender equality (goal 5), decent work for all (goal 8), and the reduction of inequalities within and among countries (goal 10) highlights the importance of such indicators too, which may be reflected in measures such as the Gender Inequality Index, Human Development Index, and the Gini Coefficient. The SDGs also specifically propose a set of 21 goals and 169 targets, which can be tracked across 232 unique indicators that measure progress toward the fulfillment of these goals. In the spirit of broadening the conception of social inclusion as a systems or national level, it is also seen how greater international consensus has come about in addressing social inclusion issues within specific areas, such as for individuals and groups of individuals based on their sexual orientation, gender identity, and expression (SOGIE). Social inclusion in the context of SOGIE has been gaining prominence at both the local and global policy arenas, which may be characterized by the introduction of multinational goals and consensus statements such as the Yogyakarta Principles in 2007, and the subsequent addition of ten more principles in 2017, also known as the “Yogyakarta Principles Plus 10” or “YP + 10.” With the introduction of these principles, there is a shift toward having a range of indicators at all levels to ensure that regardless of one’s SOGIE, individuals should universally enjoy human rights, nondiscrimination, and equal recognition before the law (principles 1–3), rights to human and personal security (principles 4–11), economic, social, and cultural rights (principles 12–18), rights to expression, opinion, and association (principles 19–21), freedom of movement and asylum (principle 22 and 23), rights of participation in cultural and family life (principles 24–26), rights of human rights defenders (principle 27), rights of redress and accountability (principles 28 and 29), as well as the ten additional principles that address additional rights to state protection, bodily and mental interity, as well as rights to the protection from poverty and access to sanitation. Unlike the SDGs, the YP + 10 is not accompanied by specific targets or indicators and thus serves as a useful guideline and conception or framing of social inclusion from a SOGIE-informed lens.

4

Inclusion Matters: Social Inclusion as a Determinant of Health

Now that it is briefly described how social inclusion may be conceptualized, operationalized, and measured at varying levels, how its measurement may be useful as a means of associating it with outcomes that pertain to health and well-being among individuals or communities can be appreciated. This section draws on the measures of social inclusion at the individual, networks and community, and systems level to discuss how they may impact health and well-being. Specifically, the impact of individual-level measures of social inclusion is based on both social cohesiontype and network-type measures, with individual-level outcomes; the impact of network or group-level measures of social inclusion, such as network or community characteristics, is based on outcomes that directly benefit an individual or positively impact or create an enabling environment for positive health and well-being; and the

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direct alignment of social-inclusion measures is based on health outcomes at the systems level.

4.1

Individual Level Social Inclusion and Health Outcomes

Social inclusion at the individual level, including measures of participation, social connection, and the sense and exercise of one’s citizenship, may impact an individual’s holistic health through varying mechanisms. With regard to participation, this may be viewed through an individual’s economic, social, and spiritual domains of life. One’s participation in economic life has long been seen as fundamental determinants of health. Many researchers have also shown how one’s socioeconomic status has been linked to all-cause mortality, even after controlling for other potential risk factors (Low et al. 2019; Stringhini et al. 2017). The lack of meaningful economic participation may impact health in multiple ways: first, through the lack of access to health-promoting goods and services; second, through the development of poor psychological states (e.g., stress) that arise from the lack of income or material security; third, through being embedded in disadvantageous circumstances that may increase one’s vulnerabilities to risk-related behaviors (e.g., smoking, HIV); and last, through its role which is limiting access to other forms of socioeconomic capital (e.g., higher education) that may subsequently affect one’s access to healthcare or health outcomes (Benzeval et al. 2014). Higher levels of social participation have been found to be associated with positive outcomes for both physical and mental health. These include a reduction in mortality in a variety of contexts (Agahi and Parker 2008; Berkman et al. 2004), as well as self-perceived or subjective quality of life (Dahan-Oliel et al. 2008) and lower levels of depressive symptoms (Ang 2018). A more qualitative component of connectedness and a sense of belonging has also been shown to be associated with health, and especially mental health among the general population (Kitchen et al. 2012). However, this positive association between a sense of community and positive health outcomes remains mixed, and the findings may vary depending on the contexts that varying groups or communities are subjected to; for example, studies on community connectedness within the LGBT community have come up with mixed findings for its association with substance use (Demant et al. 2018; Lelutiu-Weinberger et al. 2013), likely attributed to the differences in which social connectedness and inclusion have been conceptualized across these varying studies. Finally, spiritual participation, and thus higher levels of religiosity and spirituality, has been shown to be associated with positive outcomes as well, such as better mental health, health-seeking or related behaviors, and physical health (Koenig 2012). Negative effects of religion on health outcomes have also been documented, such as the positive association between religious guilt or the failure to meet religious expectations or norms, and illness (Trenholm et al. 1998). From a network approach or perspective, individual-level egocentric and sociometric measures may also be indicative of contexts and resources that may also be associated with positive health outcomes. For example, tie strength and an ideal

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compositional quality of ties may be associated with higher levels of social or emotional support (Hirsch 1980; Wellman and Wortley 1990), and having highly heterogenous networks for contacts may provide a broader range of resources that may benefit an individual (Cornwell and Laumann 2015). Other sociometric properties of the individual such as degree, betweenness, and eigenvector centralities may be expected to possess higher levels of social capital, whereas an individual that also possesses a high level of closeness centrality and network constraint would be expected to have lower levels of social capital (Lakon et al. 2008). These measures provide clues to the nature of social capital, and thus social inclusion of individuals in a given setting, and therefore have an impact on health outcomes as well.

4.2

Network or Group Level Social Inclusion and Health Outcomes

Measures of social inclusion at the group level that tell us more about group level characteristics may also help us better understand how this aspect of social inclusion may have an impact on health-related outcomes. Network-related characteristics and measures that have been identified earlier include network density, as well as centralization, offer some insight into the contexts in which individuals are embedded. Furthermore, group-level characteristics, including socioeconomic status or a shared identity, may provide further insight into the dynamics of social inclusion experienced or perceived by individuals. Network density tells us more about the proportion of ties that exist within a given network, out of all possible ties. While this may provide clues as to the nature of social mixing and thus social support within a given community, it should also be interpreted in tandem with the functional qualities of those ties. For example, some studies find that dense networks do provide social support (Israel 1982), while others have also found evidence that such environments may not necessarily be supportive in nature (Stokes 1983). Centralization, on the other hand, indicates a community or context where there are few information or resource brokers that serve as network bridges across the network of individuals. Whether this might be associated with greater or lesser social capital may depend on the characteristics of these information brokers or bridges, who may serve as barriers or facilitators of resource sharing within the network. The dynamics of social inclusion and exclusion may also apply to groups of individuals based on the shared characteristics among individuals. A study on the association between neighborhood-level socioeconomic status and all-cause mortality in the Netherlands found that those living in neighborhoods with a high proportion of unemployed, disabled, and socioeconomically disadvantaged persons had a higher mortality risk than those who did not (Bosma et al. 2001). While individuals may experience or perceive stigma, groups may also be subject to structural forms of stigma that effectively exclude, or serve as barriers to social inclusion for healthcare access or health-promoting activities. They may also be worse off in terms of individual-level measures of health and well-being due to the trickle-down effects

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of such structural stigma, which extend from group-level exclusion and thus impacting individual-level health (Hatzenbuehler 2016).

4.3

Systems Level Social Inclusion and Health Outcomes

At a systems level of conception, international consensus statements and goals have sought to address social exclusion, for example, through the MDGs and SGDs. In this sense, social inclusion has been defined in itself as a lack of access or means to achieve a state of holistic health and well-being. The MDGs, which were launched in the year 2000 with a target to achieve eight broad goals via 18 targets measured by 48 indicators by 2015, were useful in framing and measuring how countries were progressing as a means of ensuring social inclusion in a more traditional sense. While progress has been made, it has been highly unequal across the world, and there is poverty reduction in some regions such as in Asia, while it has deepened in others in countries situated in Sub-Saharan Africa. Nonetheless, a significant contribution of the MDGs to social inclusion at the international and national levels was its ability to place a spotlight, and advocate for consensus in the global development agenda on the needs of the poorest, which in turn led to a significant shift in both local and global funding commitments toward helping to achieve the MDGs (Lomazzi et al. 2014). While about a one-third way through the time line set for the achievement of the SDGs by 2030 is passed, projections show that trade-offs and synergies that exist between the various goals may allow us to easily achieve several goals, but complicate the achievement of others in the long run (Kroll et al. 2019).

5

Conclusion and Future Directions

This chapter has briefly discussed the emergence, and increasing salience, of the social determinants of health framework and how social inclusion has been treated and framed as a subject of interest through varying political and academic lenses. It has also discussed how social inclusion may be measured at the individual, network, or group, as well as the systems level and suggests how it may be important in impacting health outcomes. A summary of the discussion around measuring social inclusion as a determinant may be found in Fig. 1. Several issues remain that require further work so that efforts to promote social inclusion for individuals and communities across the globe may be hastened and consolidated. First, there are methodological considerations to address, especially due to the lack of consensus around the ways in which social inclusion is conceptualized, operationalized, and measured. There is unequivocal evidence that social inclusion plays an instrumental role in the health and well-being of communities, and as the ways and means – in which measures of it are developed – evolve and grow, so do the understandings of its links to health-related outcomes. At its very core, a gold standard instrument and conception that ties together the broad constructs of social inclusion needs to be developed, so that existing instruments and measurements used

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Fig. 1 Summary of measures of social inclusion

in existing studies may be interpreted in light of what may or may not have been measured. The rapidly emerging body of work seeking to measure social inclusion, albeit with a lack of a consensus around its measurement, reflects a growing interest and prominence of the concept in affecting health outcomes, but mixed findings on the impact of social inclusion on health outcomes that arise from methodological issues show that understanding of social inclusion as a social determinant of health will be limited if there is no effort to seek a consensus. Given the multidimensional nature of social inclusion, work also needs to be done to discuss its overlaps with other emerging fields in varying disciplines, to better delineate the mechanisms that underpin the relationship between the dynamics of social inclusion and health. Methodological innovations in the field of social networks and social capital allow us to better understand the contexts in which individuals and groups are embedded and thus tie into a more nuanced understanding of social inclusion. However, these fields have rarely crossed paths, and interdisciplinary discussions around the nature of social inclusion and its role in health are lacking in the prevailing academic discourse. Second, interventions that seek to address social exclusion, or promote social inclusion, should take into account these changing conceptions and definitions of social inclusion and thus require regular updating based on these fast evolving definitions. There is a shift in the definition of social inclusion, from one that seeks to address issues of exclusion on material grounds, to a concept that now encompasses much more than that; it is therefore imperative that consensus statements, funding priorities, and health promotion interventions be reviewed frequently

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to align with these fast evolving conceptions of social inclusion, as new evidence emerges as a result of evolving conceptions and measurements of social inclusion. A key component of this evolution would be ensuring that communities that have traditionally been socially excluded, or have faced barriers to social inclusion, be involved in planning and decision-making at all levels of research and policy to ensure that meaningful policies and thus health promotion are implemented (Minkler et al. 2003). In sum, greater academic consensus around the conception, operationalization, and measurement of social inclusion, and greater discourse and agreement around the overlapping approaches to social inclusion, will allow us to better appreciate the multidimensional nature of social inclusion, and how varying approaches and constructs may lead to correspondingly different understandings of its impact on health. Getting communities that have traditionally been excluded involved in research and decision-making will allow for the minimization of blind spots, as well as improve the chances of such efforts in improving social inclusion and health among those who are so affected. This will eventually set the stage and a strong foundation for political consensus around what needs to be implemented, and accelerate the progress to achieve socially inclusive policies and environments for all.

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Social Capital and Social Inclusion Pranee Liamputtong, Zoe Sanipreeya Rice, and Dusanee Suwankhong

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Social Capital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Capital and Health and Well Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Connectedness and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Social Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Social Capital, Social Support, and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

The role of social environments as determinants of health and well-being has been increasingly recognized. Among these social environmental components, social capital has received considerable attention in diverse fields. It has been theorized that social capital is a primary social determinant of health. Research studies have revealed a positive link between social capital and health. Social capital is perceived as the resources that are available to the person through his/her social networks. Social capital has been shown to be closely linked with social connectedness and social support. The social capital that the person has can P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] Z. S. Rice Camberwell, VIC, Australia e mail: [email protected] D. Suwankhong Department of Public Health, Faculty of Health and Sports Science, Thaksin University, Songkhla, Thailand e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_3

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enhance his/her social connections and lead to social support and vice versa. This chapter discusses the importance of social capital and social support on the social exclusion or inclusion of individuals. Theoretical frameworks of social capital, social connectedness, and social support will be discussed. The impact of social capital, and social support on the health and well-being of people will be included. The link between social capital, social support, and social inclusion will also be discussed.

Keywords

Social capital · Social connectedness · Social support · Social inclusion · Social exclusion

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Introduction Being unwanted, unloved, uncared for, forgotten by everybody I think that is a much greater hunger, a much greater poverty than the person who has nothing to eat Mother Theresa (Costello 2008, p. 14)

There has been increasing recognition of the role of social environments as determinants of health and well-being. Among these social environmental components, social capital has received considerable attention in diverse fields (Agampodi et al. 2015; Moore and Kawachi 2017; Paarlberg et al. 2018). It has been suggested that social capital is a primary social determinant of health (Han et al. 2018). Many researchers have examined the link between social capital and physical health outcomes (van Hooijdonk et al. 2008; Vincens et al. 2018). More recently, the association between social capital and mental health issues has also been examined (Han and Lee 2015; Kim et al. 2017a, b; Wilmot and Dauner 2017; Han 2019). Research studies have revealed a positive link between social capital and health (Han 2019). In general, social capital is perceived as the resources that are available to the person through his/her social networks (Han 2019). A sociologist, Durkheim, who theorized social capital and suicide at the end of the nineteenth century, suggested that suicide rates were closely linked with stratums of social ties. Since the late 1970s, evidence of a general association between health statuses and social integration has been well established, revealing that individuals with tenacious social ties had mortality rates half or a third of those with fragile social networks (Field 2017). Research has suggested that social capital is closely linked with social connectedness and social support. The social capital that the person has can enhance his/her social connections and lead to social support and vice versa. This chapter discusses the importance of social capital and social support on the social exclusion or inclusion of individuals. Theoretical frameworks of social capital, social connectedness, and social support will be discussed. The impact of social capital, and social support on the health and well-being of people will be included. The link between social capital, social support, and social inclusion will also be discussed.

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Social Capital

Fundamentally, social capital underscores the influence of community connections between individuals in promoting and empowering collective action to occur (Whiteley 2015). Social capital, according to Bourdieu (1986, p. 248), refers to “resources which are linked to possession of a durable network of more or less institutionalized relationships of mutual acquaintance and recognition—or in other words, to membership in a group—which provides each of its members with the backing of the collectivity-owned capital, a ‘credential’ which entitles them to credit.” To Putnam (2000, p. 19), social capital signifies “social networks and the norms of reciprocity and trustworthiness that arise from them.” There are two main concepts in social capital that have been identified by scholars: “social networks and trust (or norms of reciprocity)” (Lee 2018, p. 37). The social capital concept has its origins in an examination of the role of communities in human society. This traverses back to the writings of Greek philosophers such as Plato and Aristotle. Social capital has been studied by a number of sociologists including Durkheim, for his well-known study of suicide (as pointed out above). However, social capital has achieved its eminence from the work of three luminary theorists: Pierre Bourdieu (1986), James Coleman (1988), and Robert Putnam (1993) (Whiteley 2015). Coleman theorizes that social capital enables society to do things that, without it, might not be able to achieve. Coleman (1990, p. 302) suggests that social capital is “productive, making possible the achievement of certain ends that would not be attainable in its absence.” For Bourdieu, the links between individuals in social networks are important. Putnam (2000) proposes two distinguished types of social capital: bonding bridging social capital. Bonding social capital refers to a strong social connection between closed group members, including family members, neighbors, close friends, and religious group members or groups that share similar social characteristics (e.g., social class, race/ethnicity, gender, and age). Bridging social capital indicates a more detached link between members of divergent groups, for example, youth groups or across groups of different social statuses (Moore and Kawachi 2017; Lee 2018). Recently, the concept of cognitive social capital has been included in the literature of social capital. The concept is discussed in comparison to the structural social capital dimension discussed above. This dimension of social capital denotes the feeling about the social relationships of people, including reciprocity and trust (Han 2019). Trust refers to the confidence or belief that someone is honest, truthful, and reliable. It symbolizes a critical “moral resource” that exists within social networks and facilitates “collective action and social solidarity” (Moore and Kawachi 2017, p. 514). The structural dimension can be identified as the cognitive dimension of social capital. In mental health, for example, structural social capital may affect mental health through social support networks that enhance accessible resources, including appropriate housing, job opportunities, better access to local facilities, and health promotion information. However, cognitive social capital may impact mental health

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via psychosocial channels that provide support for the improvement of self-esteem and other means that can guard against the impact of negative life events (Han 2019). However, social capital does not uniformly exist among individuals and communities (Cai 2017). There is inequality of social capital that individuals may have in both the quantity (such as the number of social networks) and quality of social capital that they can enjoy (Baheiraei et al. 2016, 2018; Cai 2017; Shadi et al. 2018, p. 244). Social capital is inextricably linked with inequality in social class, ethnicity, and gender (Verhaeghe and Van de Putte 2012; Ferlander et al. 2016; Paarlberg et al. 2018; Pinillos-Franco and Kawachi 2018; Vincens et al. 2018). Social capital can in itself lead to inequality because a connection to social networks is unequally dispensed. As Field (2017, p. 50) puts: “Everyone can use their connections as a way of advancing their interests, but some people’s connections are more valuable than that of others.” Although all forms of social capital can result in improvement in the life of individuals through different means, they can also generate negative consequences. This is particularly so for bonding social capital. Negative outcomes might occur within particular contexts because of extreme demands, restricted freedoms, limited opportunities, and strong pressures (Moore and Kawachi 2017). For instance, having bonding social capital within a setting of limited resources may provide a positive outcome, for example, a strong sense of belonging, but it can also be “a liability,” when “social obligations become excessive and down levelling norms are prevalent” (Moore and Kawachi 2017, p. 513). Bonding social capital excludes nonmembers, and this will restrict the transfer of knowledge between social groups. Bonding social capital can enforce collective endorsements on social norm violations; this is likely to create mental distress among the members (Lee 2018).

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Social Capital and Health and Well-Being

Social capital and health are intricately linked (Moore and Kawachi 2017; Lee 2018). Social capital can impact both mental and physical health. Putnam (2000) claims that happiness is best determined by the breadth and depth of a person’s social network. According to Putnam (2000), as social connection decreases, the risk of depression and suicide has been shown to increase. The link between social capital and health has started to receive more attention in the late 1990s and early 2000s when it was apparent that the socioeconomic status of individuals is inextricably linked with inequality in health. Social capital was seen as a potential moderating factor to reduce the impact of income inequality on health. Lee (2018, p. 37), citing Szreter and Woolcock (2004), suggest that there are three viewpoints on the impact of social capital on health: (i) a social support perspective holds that informal networks are central to welfare; (ii) an inequality perspective argues that economic inequalities erode citizens’ sense of social justice and inclusion, which in turn gives rise to anxiety and limits life expectancy; and (iii) a political economy perspective claims that the socially and politically mediated exclusion from material resources leads to poor health.

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But how does social capital influence health? In his writing, Putnam (2000, p. 327) posits that there are four main reasons for this. First, social networks of individuals can provide perceptible physical support, and this in turn helps to curtail stress. Second, social networks can bolster healthy patterns. Third, individuals with social networks are likely to be able to effectively campaign for healthcare services. Fourth, social interaction between individuals may trigger the body’s immune system. Recently, Lee (2018, p. 39) provides discussions about the influence of social capital on health and well-being. First, social capital can enhance the mental health of an individual. Social trust and network and can diminish stress from fear and anxiety about the presence and actions of other people. Social capital within one’s neighborhood offers social support as well as functions as the source of collective recognition and self-confidence. These are referred to as the “compositional health effects of social capital” (Veenstra et al. 2005, p. 2800). Second, social capital can act as health-promoting channels through the sharing of information among group members. Through social networks, group members can obtain pertinent, up-todate, and accurate health information. This in turn assists the social group to make the correct decisions for health improvement. Third, social capital may function as social support and control. Through social networks, individuals can influence the behavior of others. Through informal social control, social capital can encourage healthy behaviors. For example, deviant health-related behavior of others in a community (such as smoking and alcohol use) can be sanctioned by members of the group. Importantly, social capital offers diverse forms of social support such as social assistance in coping with stressful life events. Fourth, social capital energizes social and political circumstances that impact health. This is referred to as the “contextual effect of social capital” on health (Veenstra et al. 2005, p. 2800). For example, social networks can mobilize people toward the adoption of a green zone or against local natural disasters. Social trust strengthens people to lobby governments to ensure access to public health care in the community. Social capital is more important determinant of health in low socioeconomic locations (see Story 2013), and in less-developed nations where public health infrastructure tends to be limited. In these settings, social capital may function as a stand-in for healthcare. Social capital offers entry to healthcare services in deprived neighborhoods (Lee 2018), and in remote and sparsely populated areas like Bhutan (Herberholza and Phuntsho 2018).

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Social Connectedness and Health Our social connections to others have powerful influences on health and longevity and that lacking social connection qualifies as a risk factor for premature mortality. (Holt Lunstad 2018, p. 437)

Social connectedness (or social connection) has been adopted as a discursive term to refer to the multifarious means that individuals connect to others emotionally, physically, and behaviorally (Holt-Lunstad 2018, p. 440). The term embraces

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Fig. 1 Social connectedness

functional, structural, and qualitative facets of social relationships that lead to protection and risk (Holt-Lunstad et al. 2017, p. 518). Figure 1 represents the salient features of social connectedness. According to Holt-Lunstad (2018, p. 440), the extent to which an individual is socially connected is based on multifarious components. These include: • Connections to others through the presence of liaisons and their characters • A sense of connection that emerges from perceived or actual inclusion or support • The sense of connection to others that is based on positive and negative conditions Social connectedness has also been referred to as a facet of the self that mirrors “subjective awareness of interpersonal closeness.” Ang et al. (2017, p. 1991) contend that “this sense of closeness is a critical component of one’s sense of belonging.” It rests on the acquired experiences of close or distant relationships. Thus, social connectedness is “an enduring and ubiquitous experience of the self in relation to the world” (Ang et al. 2017, p. 1991). For many individuals who are at risk of social exclusion, social connectedness is critical (Ang et al. 2017). Social connectedness has been found to enhance individuals’ health and wellbeing (Ang et al. 2017). Adler (1930, p. 11) posited that as human beings, individuals have a basic need to belong, and it is this “social feeling” that clearly connects them to their social world (McNamara et al. 2017). Social connection is essential to human advancement, health and well-being, and continuity (Holt-Lunstad et al. 2017). It is also central to human functioning (Annear et al. 2017). It serves as a buffering impact in the face of life adversities (Seppala et al. 2013). Supportive social connections can serve as a capital to aid cushion negative life experiences and increase space for dealing with adversities through common coping means (Annear et al. 2017). Research evidence has revealed that feeling socially connected to ones’ social networks is linked with reduced risk for ill-health and diseases (Holt-Lunstad et al. 2017). Social connectedness is also intimately linked with subjective well-being. Socially active individuals who have good social ties tend to have lower levels of

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emotional difficulties, but higher levels of happiness and resiliency. A lack of social connection can result in more psychological distress as well as endangers the person’s ability to immerse in positive social relations (Seppala et al. 2013). The gravity of social connectedness for mental health and well-being is wellrecognized. Social connectedness helps individuals experiencing mental health problems to deal with their negative lived experiences. It has been suggested that social connectedness can delay the development of mental ill-health such as depression and suicidal behavior (Teo et al. 2013; Kleiman et al. 2014; Panagioti et al. 2014). It also increases the tendency for these individuals to seek help (Andrea et al. 2016; McKenzie et al. 2018). Among young people, strong social connectedness serves as a protective factor against diverse risk behaviors. Social connectedness reduces the feeling of loneliness, anxiety, and stress, and this cultivates positive mental health outcomes among young people (see Pang 2018; Bano et al. 2019). Linkages to the social world are crucial for feelings of belonging, self-identity formation, and cultivating personal interests (Mamatis et al. 2019). For older adults, social connectedness may increase access to, and use of, health care and social services (see Kim and Shen 2020; Zhao et al. 2020). It has assisted men who are at risk of social isolation to be more socially connected. A good example of an attempt to create social connectedness among men is the initiation of Men’s Shed in Australia. Men’s Sheds were developed in Australia in response to the well-being of retired men. Men’s Shed is a volunteer-based, not-for-profit, grassroots community exercise that offers spaces for men to be involved in diverse activities in a supportive environment. The Sheds attempt to close the gap between paid work and retirement for older men as they are the space these men can take part in social programs and become engaged in community activities. This initiative has gained great interest internationally, in particular in the UK, Ireland, and continental Europe. Men’s Sheds also provide men with the occasion to support each other by sharing their experiences and concerns about health and relationships (Ang et al. 2017, p. 1987). In their research on Men’s Sheds and human resource management (HRM) in Australia, Ang et al. (2017, p. 2007) suggest that Men’s Sheds “provide a conducive environment through HRM” where the men “can seize opportunities to build relationships and enhance their health and well-being.” Men’s Sheds serve as an important means for older and retired men to continue their social engagement with the community. Their findings reaffirm the value of the maintenance of social connection for older men with the community.

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Social Support

Connectedness with others is closely associated with increased social support that benefits individuals through help with emotional burdens and everyday life activities (Mamatis et al. 2019). Framed within the social capital theory, the social capitals of a person are essential to their capability to deal with pressures and difficulties in life

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(White et al. 2019). These social capitals include the person’s access to social support (such as perceived or actual assistance from others), the perception of belonging, the intensity of engagement, and social integration with various relationships (Hawkins and Mitchell 2017; White et al. 2019). Social support has been perceived by the World Health Organization as a determinant of health (HoltLunstad et al. 2017). There have been several definitions of social support. Cohen (2004, p. 676) refers to social support as “a social network’s provision of psychological and material resources intended to benefit an individuals’ ability to cope with stress.” Cohen (2004, p. 677) also links social support to social integration, and it refers to “participation in a broad range of social relationships.” Theoretically, social support can be symbolized as the type or quality of social interaction (Hawkins and Mitchell 2017). According to Bloom et al. (2001), there are two distinct concepts of social support that most researchers have agreed upon. First is the “structural support” which refers to “the network of relationships” which is in place between individuals and others including relatives, friends, neighbors, and so on (p. 1513). The second aspect of social support is “functional support,” and this includes tangible assistance, emotional support, and availability of information. Tangible or instrumental support refers to the specific assistance that others provide to the individual, such as financial assistance, household chores, childcare, or the provision of transport to medical appointments. Emotional support includes messages which signify that the individual is cared for, loved, and valued. It has been theorized that the perception of the availability of tangible and emotional support is more important than its actual occurrence (Drageset et al. 2012; Suwankhong and Liamputtong 2016; Dumrongthanapakorn and Liamputtong 2017). Informational support means the provision of knowledge that is relevant to the situation that the individual is encountering (Bloom et al. 2001). Others may categorize social support into four groups. However, these four categories fall into the structural and functional supports as theorized by Bloom et al. (2001) as discussed above. For example, Fleury et al. (2009) and Hawkins and Mitchell (2017 suggest that social support involves four subtypes: emotional, instrumental, appraisal, and informational. Each type of support has its function but they play integrative roles in meeting the needs of individuals (Cohen et al. 2000). Emotional support involves feeling supported by another individual through an exhibition of emotions such as empathy or trust. An example of this is one person supporting another who has recently lost a family member by talking to them and empathizing. Instrumental support comprises of a tangible aid or service being provided by one person to another, such as the offering of bringing food around for someone who is sick. Appraisal support is the provision of information that can be utilized in self-appraisal, such as supporting someone else by stating “You’re making the right decision.” This will allow the individual to make their own decision but still feel supported. The final subtype is that of informational support, which involves the offering of advice, suggestions, or information by one individual to another on how to address a certain issue or problem. An example of informational support is a health care provider advising a patient on the best treatment plan for an illness.

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Different social support can be obtained from different sources and may become essentially important at different stages and trajectories of a person’s life. Often, these four types of support will not be given by the same person, and therefore a diverse support network is an ideal for someone to feel supported and socially included in society (Fleury et al. 2009). Some typical sources of support that a person may have can be from family members, close friends, peers, and health care professionals. They offer different levels of social support needed. It has been posited that social support plays a crucial role in the health and wellbeing of people with serious illnesses (Hawkins and Mitchell 2017; White et al. 2019). The knowledge that social support is closely linked to health was first established by John Cassel. Cassel (1976) makes a compelling argument that “the quality of a person’s social relationships, that is, the degree to which her relationships are more stressful than supportive (or vice versa) influences her susceptibility to disease independent of genetic endowment, diet, physical activity” (James 2017, p. 1032). He notes that limited or fractured social connections impacted the immune system of people. Thus, it rendered them more susceptible to ill-health. Since then, numerous researchers have attempted to understand the tie between social support and health and the influence of social ties on health and illness. Individuals who have no social support may have a poorer quality of life, especially among those who have ill-health. Social support assists individuals, who confront crises, to cope and manage their difficult lives better. Social support enhances human functioning and hence improves their quality of life. Literature has suggested that social support is an essential means of reducing distress among people living with breast cancer. Many studies have confirmed that social support plays a vital role in promoting psychological health outcomes among individuals living with breast cancer (Drageset et al. 2012; Suwankhong and Liamputtong 2016; Dumrongthanapakorn and Liamputtong 2017; Zhang et al. 2018; Ure et al. 2019; Kugbey et al. 2020). Social support is linked with better health and quality of life for women living with breast cancer. Specifically, social support helps to decrease the stress associated with the diagnosis of breast cancer among the women, improve their emotional well-being, and produce positive changes in their lives. In contrast, women who have insufficient social support have a higher risk of psychosocial distress and depression, as well as the progression of their cancer.

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Social Capital, Social Support, and Social Inclusion The effects of social exclusion can be powerful and aversive, with long term detrimental effects on wellbeing and increased risk for psychopathology. Social [support] therefore may offer a system that can be harnessed to enhance protection against the psychosocial and physiological burden of socially isolating experiences. (Liddell and Courtney 2018, p. 13)

Social capital, social connectedness, and social support are inextricably linked with social inclusion and exclusion (Wesselmann et al. 2019). The availability or lack of social support determines the sense of social inclusion and exclusion in an

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individual. With social support, people will feel that they belong to the group or community. Additionally, the availability of social support signifies that they are valued by others in their social networks (Crocker et al. 2017; Wesselmann et al. 2019). The interconnection between social connectedness, social support, and social capital that can increase social inclusion can be summarized in Fig. 2. Through social connectedness, individuals can cultivate social support and social capital which can allow them to engage in social participation thus increasing their social inclusion. Through social participation, individuals are likely to cultivate more social ties and expand their social capital that again leads to a higher level of social inclusion. Mamatis et al. (2019, p. 7) write: At the individual level, our social connections and relationships with individuals and groups can expand and strengthen our networks and social capital. Through our social networks and social participation, we identify common issues of interest or concern and find the material and cognitive resources that enable us to take action to address those issues. Likewise, through our engagement and social participation, there is an opportunity to form new social ties, develop trust in others, and expand our social capital.

To illustrate the point, two examples are included here. The main component of aging well is having a sense of connection with others (Rowe and Kahn 2015; Han et al. 2018). Social capital offers spaces for social interaction and social support that can benefit older persons (Coll-Planas et al. 2017; Park et al. 2017; Lager et al. 2015). Within a community, being aware of older individuals who are less mobile and require frequent help with daily activities offers a strong network of people who Fig. 2 Social inclusion

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can provide help when needed (Fukui and Menjívar 2015). Additionally, relationships between neighbors provide informational and symbolic interactions, and this creates “a sense of safety, protection, and belongingness” for older persons that can also lead to the reduced risk of social isolation (Versey 2018, p. 2). It has been well recognized within the area of disaster risk reduction (DRR) and community resilience research that social connectedness is a crucial source of support during and after a disaster. Community resilience is defined as the ability of a community to be able to regain from a disaster and to sustain life-changing adjustments using collective action in dealing with its impact (Patel et al. 2017; Wilkin et al. 2019). It is suggested that social support plays an important role in contributing to a community resilience that will assist the community to be able to recover and resume life after the shock of a disaster (Wilkin et al. 2019). Social support in the form of social capital can enhance the resilience of a community (Aldrich and Meyer 2015; Pfefferbaum et al. 2017). A recent disaster event (the 2017 floods in Houston, Texas) has shown the crucial role of social support and social capital, where residents are involved in the immediate response to floods and assist with longer-term recovery. According to Wilkin et al. (2019, pp. 1–2), this community support is built by the assumptions of social capital: Cooperation and collective action is facilitated by the participation of individuals and communities within different types of social networks, as well as by the trust and belief within and between these networks that this help would be reciprocated if and when needed, creating a sense of goodwill towards one another. This support can come from relationships within the affected communities or through linkages to other communities.

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Conclusion and Future Directions Human beings greatly care about their friends and relationships, and such a caring, shown as social capital, has its own merits. The health effects of social capital are one of its main merits. (Shadi et al. 2018, p. 260)

This chapter has outlined important social concepts that have helped individuals to be able to cope with adversities in life including social capital, social connectedness, and social support. It has suggested that social capital is intently associated with social connectedness and social support. The social capital that the person possesses can enhance his/her social connections and lead to social support. This in turn will result in the social inclusion of the person. For those who lack social capital and social connections, they are less likely to receive social support and this renders them more socially excluded. The chapter has also suggested that social capital, social connectedness, and social support have a great impact on the health and well-being of individuals. Numerous research has shown the association between positive social capital, social connectedness, and social support to good health outcomes and vice versa. It is clear that with the current social and political crises that we are facing, social capital, social connectedness, and social support will continue to play an important

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role in the lives of many people around the globe. Not all people have access to social capital, connectedness, and social support as there are social inequalities among individuals and nations. Numerous chapters in this handbook have pointed to individuals and communities who are socially excluded due to their social and cultural positions in society. This is an urgent issue that must be addressed. Regardless of where we reside, with sufficient social capital, connection, and support, all of us will be more socially included, and thus being able to live a happier and healthier life. This will inevitably lead to a more just world for all of us.

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Towards Social Inclusion, Social Justice, and Health Equity Sharon Yanicki

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 An Integrated Framework for Social (in)Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Social Inclusion/Exclusion of Children and Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Early Child Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Explanations for the Impact of Social Inequalities in Childhood . . . . . . . . . . . . . . . . . . . . . 3.3 Child Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Racism and Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Equity Action to Address Inclusion and Exclusion in a Canadian Study . . . . . . . . . . . . . . . . . . . 5 Global Examples of Health Equity Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Evidence Based Policies and Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix 1 Additional Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Social inclusion is an urgent matter of social justice and a requirement for health equity. This chapter presents a multilevel approach grounded in social justice to promote the inclusion of low-income and ethnoculturally diverse children and families in the life of their community. Equity action is required to address the relational processes and social conditions that sustain social exclusion and enable social inclusion and participation. In this chapter, social inclusion/exclusion (SI/SE) is reviewed from three Canadian discourses: (a) valued recognition, (b) capability development, and (c) citizenship and equality. An integrated social justice framework embedded in a socioecological model is applied to illustrate how complex social inequalities due to income and race/ethnicity intersect to sustain social exclusion, poverty stigma, discrimination, racism, racialization, and health S. Yanicki (*) Faculty of Health Sciences, University of Lethbridge, Lethbridge, AB, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_4

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inequities in society. Multilevel equity actions (interventions) are presented to promote inclusion and just social conditions and to address exclusion and unjust social conditions. Canadian research is present first in relation to the Integrated Framework. Equity action examples are then explored from the USA, Australia, and New Zealand to highlight how SI/SE can be addressed for children and their families and health equity promoted across settings and contexts. Keywords

Social inclusion/exclusion · Social justice · Health equity · Children · Families · Equity action

1

Introduction

Social inclusion and social exclusion (SI/SE) are intertwined or dialectical concepts focused on the relational processes and structural conditions enabling or constraining participation (Yanicki et al. 2015). The processes and structures sustaining exclusion need to be addressed in order to create the conditions necessary for inclusion (Public Health Agency of Canada (PHAC) and Pan-Canadian Public Health Network (PCPHN) 2018; World Health Organization [WHO] Commission on Social Determinants of Health 2008). While more research has focused on social exclusion than the SI/SE dialectic or inclusion (Stewart et al. 2008), this chapter explores the SI/SE dialectic and the processes and conditions enabling or constraining the participation and equitable health of children and families (Yanicki 2016). Participation, inclusion, and health equity are inextricably linked. Participation in community life is influenced by the social expectations and expected behavior in a given social setting (Carspecken 1996) and enabled or constrained by lived experiences of SI/SE (Yanicki 2016). Participation is a meaningful act; similarly, nonparticipation may reflect a lack of choice, a sense of shame and self-exclusion (Sen 2000), or resistance to dominant cultural norms (Bach 2005; Yanicki 2016). According to the World Health Organization (2008, p. 33), “being included in the society in which one lives is vital to the material, psychosocial, and political aspects of empowerment that underpin social well-being and equitable health.” Health equity is “the absence of avoidable, unfair and remediable [health] differences among groups of people. . .” (WHO 2020, para 6). The participation of children and families in community life is a necessary condition for well-being and equitable health. Health equity action involves promoting optimal health for all, while giving special attention to improving the health of those experiencing health inequities (WHO 2020). Viewed as a normative concept, social inclusion describes the ideal conditions enabling social relationships and community participation (Guildford 2000; Yanicki et al. 2015). These conditions are thought to include relational processes of respect and recognition for human dignity and diversity; feeling welcomed, accepted, and valued (Bach 2005; Freiler 2002; Yanicki et al. 2015); a sense of belonging supported through mutual recognition; and social esteem and solidarity at a community level (Honneth 1995; Yanicki et al. 2015). Additionally, the social conditions – socioeconomic,

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political, cultural, and historical – enabling inclusion are predicated on social structures ensuring equality, justice (Labonte 2016), respect for citizen’s rights and responsibilities (Beauvais et al. 2001; Yanicki et al. 2015), and the just distribution of a society’s benefits, burdens, wealth, and resources (Labonte 2016). Social inclusion is focused on creating a just society where children and families have opportunities for valued participation, are able to meet basic needs, and have opportunities for optimal development and well-being (Sen 2000). Viewed as a critical concept, social exclusion involves unequal power relations, dynamic relational process, and structural inequalities within society that systematically advantage some groups while disadvantaging others (Labonte 2016). Relational processes of exclusion may lead to lived experiences of: shame (Sen 2000), feeling kept out, left out (Reutter et al. 2009), devalued (Reid 2004), or stigmatized (Reutter et al. 2009). Based on critical social theory (Habermas 1984; Yanicki et al. 2015), social exclusion occurs due to social inequalities – by income, race/ethnicity, gender, sexual identity, ability, and age – that constrain opportunities, participation, and access to needed resources (Galabuzi 2016), and the health and well-being of disadvantaged groups within society (Raphael 2016b; Sen 2000). The dynamic relational processes of exclusion occur at multiple levels of social relations (PercySmith 2000), and structural inequalities occur within specific socioeconomic, political, historical, and ethnocultural contexts in all societies (Popay et al. 2008). Social inequalities by income and race/ethnicity intersect as sources of social exclusion and health inequities (WHO 2008). In wealthy nations such as Canada, some population groups persistently experience health inequalities. Health inequities are more common among: Indigenous peoples, low-income families, racialized groups, lone-parent mothers, new immigrants, and people living with functional limitations (PHAC and PCPHN 2018). In 2011, one in six Canadian children lived in poverty; in contrast, Black, First Nations and new immigrant children were (2.7, 2.6, and 2.2 times) more likely to live in poverty (PHAC, PCHIRI, Statistics Canada, Canadian Institute for Health Information [CIHI] 2018). Health and social inequities in population groups are unfair, unjust, and potentially modifiable (Whitehead 1991). Thus, SI/SE are urgent matters of social (in)justice and health (in)equity (WHO 2008; Yanicki et al. 2015). The SI/SE dialectic has been conceptualized in a variety of ways; therefore, it was important to explore discourse on SI/SE in interdisciplinary literature. The interdisciplinary Canadian literature on SI/SE reviewed included: nursing, public health, community development, political economy, and global health. This discourse is further grounded in global discourse on poverty, deprivation (Sen 2000), racism, racialization (Galabuzi 2016), critical social theory, oppression, justice (Habermas 1984; Yanicki et al. 2015; Young 1990), inequalities (Raphael 2016b), and moral philosophy (Honneth 1995; Yanicki et al. 2015). Community development (CD) is one process that has effectively been used to strengthen participation, build capacity, and create the conditions and resources needed for health (WHO 1986; Yanicki 2016). In an early European conceptualization, SI/SE was viewed as a social right of citizens (Barata 2000; Yanicki et al. 2015); social inclusion involved the right to a basic standard of living and social and economic opportunities, while social exclusion resulted from poverty and economic deprivation. By the 1990s, European

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discourse on SI/SE had expanded to include participation, recognition, capabilities, equality, and freedom from discrimination (Levitas 2003; Yanicki et al. 2015). Canadian discourse on SI/SE arose in the late 1990s during a period of rising social inequalities associated with globalization and neoliberal social policies including cuts to welfare program benefits (Labonte 2016), economic restructuring, and a decline in stable full-time employment (Guildford 2000; Yanicki et al. 2015). Early Canadian discourse on social inclusion addressed opportunities for child and family participation; social exclusion was considered in relation to poverty, historic oppression, racism, and disability (Freiler 2002; Yanicki et al. 2015). Three discourses on SI/SE were identified in Canadian literature including a discourse on recognition, capabilities, and equality and citizenship (Yanicki et al. 2015). These three discourses reflected differing assumptions about the relational processes and the social conditions or social structures that enabled or constrained participation and SI/SE. These discourses are described briefly below (for a more detailed discussion see Yanicki 2016; Yanicki et al. 2015): • In the discourse on recognition, social inclusion involved conditions and relational processes that reflect mutual recognition, and respect for human dignity (Bach 2005; Freiler 2002; Honneth 1995; Yanicki et al. 2015), difference [“the other”], and unique group identities (Bach 2005; Yanicki et al. 2015; Young 1990). Social exclusion involved conditions and relational processes that sustain stigma, disrespect, misrecognition, and fear of difference. • In the discourse on capabilities, social inclusion involved social conditions and relational processes that enabled equal opportunities for participation, capability development, well-being, and a minimally adequate standard of life (Sen 2000). Social exclusion involved lacking the freedom and opportunities to develop the basic functionings and capabilities to meet one’s basic needs and to fully participate in community life (Sen 2000). • In the discourse on equality and citizenship, social inclusion involved conditions that enabled equal citizenship including opportunities to realize rights and responsibilities (Beauvais et al. 2001; Yanicki et al. 2015), fair access to and distribution of society’s benefits and burdens (Labonte 2016), and freedom from oppression (Galabuzi 2016). Social exclusion results from structural inequalities and involves Eurocentrism, racialization, discrimination, and oppression that systematically disadvantage and devalue a group of people while privileging others (Galabuzi 2016). It is interesting that the World Bank’s (2020, para 1) definition of social inclusion takes in elements of these three discourses: “Social inclusion is the process of improving the terms on which individuals and groups take part in society—improving the ability, opportunity, and dignity of those disadvantaged on the basis of their identity.”

2

An Integrated Framework for Social (in)Justice

Discourses on SI/SE have been outlined here as distinct views, yet, when these dialectical concepts are considered together, a more comprehensive picture of SI/SE emerges. The Integrated Framework for Social Justice (or the Integrated

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Framework) conceptualizes SI/SE as matters of social (in)justice (see Fig. 1) (Yanicki et al. 2015). Social justice is viewed as a means for achieving health equity and as a valued outcome (Canadian Nurses Association 2010). Some authors have conceptualized social justice as a unidimensional concept involving fairness and distributive justice (Rawls 1971; Yanicki et al. 2015); others describe a multidimensional concept of social (in)justice with relational and structural dimensions informed by critical (Falk-Rafael and Betker 2012) and postcolonial theories (Reimer Kirkham and Browne 2006). Figure 1 by Yanicki, Kushner, and Reutter (2015, p. 127) is reprinted here with permission from Nursing Inquiry, License # 4939030431485 RightsLink, Oct, 30 2020. This figure was first printed in an article by Yanicki, Kushner, and Reutter (2014). The Integrated Framework expands upon the work of Percy-Smith (2000) by considering the relational and structural dimensions of SI/SE at multiple levels of social interaction. SI/SE are addressed at the following levels: (a) the intrapersonal level – feelings, experiences, and internalized responses; (b) the interpersonal level – relational process in interpersonal interactions; (c) the organizational level – interactions with professionals and the impacts of organizational routines, policies, and practices; (d) the community and societal levels – social conditions, structures, and contexts at community and societal levels; and (e) the global level – social conditions and structures across societies. The relational processes and social conditions of SI/SE identified in Canadian discourse addressed in the Integrated Framework are presented

Fig. 1 Integrated framework for social justice (Yanicki et al. 2015, p. 127)

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in Table 1 (adapted from Yanicki et al. 2015). This table highlights a multilevel multidimensional view of SI/SE. Exclusion may be experienced in interpersonal and organizational interactions, and in community attitudes and social routines. The participation of children and families may be limited through internalized responses such as a sense of shame and stigma awareness, and through daily interactions that misrecognize, distance, and devalue difference. Program and transportation costs may create barriers to children’s participation in recreation and sports programs. Stigma and racism may also systematically lead to spatial segregation in children’s activities, in the location of social housing, in differential access to needed resources, and unjust differences in opportunities and outcomes. Promoting inclusion requires multilevel actions to support just social relations and create just social conditions. Collective action is needed to improve the quality of social interactions at interpersonal, organization, and community levels. Changes in community and societal attitudes are required to create awareness and build support for children living in poverty, and to foster solidarity and respect for difference and diversity. At a community level, opportunities need to be created to enable participation and enable access to barrier-free universal programs that welcome all families with children to participate in valued activities as well as targeted programs to address the needs of vulnerable groups. The Integrated Framework is grounded in CD and empowerment strategies to address SI/SE through equity action (Yanicki et al. 2015). The range of actions embedded in the Integrated Framework may seem like a daunting task; however, community change often begins by a small group of people selecting one priority area for urgently needed action. One rural Canadian study is presented that reflected a wide range of equity actions to address SI/SE consistent with the Integrated Framework. Examples from American, Australian, and New Zealand equity action are then presented to highlight global equity action (WHO 2008). This chapter addressed the following questions: 1. Why is the social inclusion/exclusion of children and families an important matter of social justice? 2. What types of participation and equity action enabled a sense of inclusion for low-income and Indigenous children and families in a rural Canadian study? 3. What can we learn from examples to promote equity action on SI/SE from differing countries?

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The Social Inclusion/Exclusion of Children and Families

3.1

Early Child Development

Early child development (ECD) is a human rights issue (United Nations 1989), and a social determinant of health with impacts on health outcomes and wellbeing across the lifecourse (Raphael 2016a). Unfortunately, when Canada is

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Table 1 Canadian discourse on social inclusion/exclusion by level and equity action Canadian discourse on SI/SE Recognition

Socioecological levels Intrapersonal

Interpersonal

Interpersonal and organizational

Community

Society and global

Capabilities

Intrapersonal

Interpersonal

Social inclusion Mutual recognition Claiming a valued identity Self esteem Consciousness Voice Acceptance Belonging Respect and dignity Participation

Social exclusion Misrecognition Stigmatized identity Low self esteem Learned helplessness Silencing voice Internalized powerlessness Disrespect

Equity action to address SI/SE Consciousness raising Build trust Opportunities for acceptance

Promote voice Promote empowerment Respectful interactions Self isolation Promote participation Stigma Reject and reduce awareness stigma Valuing difference Fear of difference Social interactions across difference Respect for Denial of opportunities for diversity and difference belonging unique group differences Reduce stigma Social esteem Stigma Reject racism Social solidarity Racism, Promote solidarity discrimination, and social distancing Respect for rights Dominant values Critique of oppression Universal values (Hegemony) Reject racism and human rights History of Reconciliation colonialism Oppression Build trusting Positive social Shame relationships Self isolation Self exclusion Lack of freedom Opportunities for Freedom choice among Able to participate Relational valued activities Developing basic deprivation Promote just social functionings and Lacking basic relations functionings capabilities Capability failure Meeting basic needs Inability to meet basic needs/ impoverished lives (continued)

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Table 1 (continued) Canadian discourse on SI/SE

Socioecological levels Interpersonal and organizational Society and global

Equality and citizenship

Community

Social inclusion Opportunities for capability development Universal values, freedom and well being as human rights Equal citizenship

Social exclusion Constrained opportunities Capability deprivation Lack of freedom to exercise rights

Shared power

Denial of equal citizenship Unequal distributions Denial of equal citizenship Intersecting inequalities Oppression Racism and racialization Discrimination Powerlessness

Support for participation

Barriers to participation

Societal

Human and civil rights

All levels

Social justice

Inadequate realization of rights Social injustice

Society

Shared Intrapersonal concepts across Canadian Interpersonal SI/SE discourses

Distributive justice Universal values (equality) Equal citizenship Respect for diversity Freedom from oppression

Equity action to address SI/SE Create opportunities for development Address capability deprivation Create support for shared values Address sources of inequality Just social relations and structures Fair access and distributions Address sources of inequality and unjust structures Challenge oppression Affirmative action to promote equality/ equity Negotiate power relations Address barriers and create opportunities Support participation and human rights Address social injustice Address social exclusion Promote inclusion

compared to other wealthy developed nations on ratings of child well-being, the results are concerning. The Innocenti Report Card (UNICEF 2020) rated Canada 30th of 38 countries on child well-being across mental well-being, physical health, and skills; this is a drop from a rating of 17th out of 29 countries in 2013 (UNICEF). In the 2020 report, mental well-being included “feeling happy, satisfaction with life,. . .a sense of flourishing,” and suicide rates; physical health included rates of child mortality, obesity, and overweight; and skills included proficiency in reading, mathematics, and social skills (UNICEF 2020, p. 12). This significant decline in indicators of well-being for Canada’s children requires equity action; two positive policy changes have been implemented including a

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National Poverty Reduction Strategy and the Canada Child Benefit (Government of Canada 2018). The child poverty rate for 2018 was 12.3% (Low Income Measure of less than 50% of median income) with little change from 2017, however income inequality declined as the after-tax income of the bottom 40% rose by 2.5% (Statistics Canada 2020). How are ECD and child health linked to social inequalities? ECD and child health are impacted by both the programs and supports available for parents and families and the relational and social conditions leading to SI/SE in the society in which children live, play, and grow (WHO 2008). Social inequalities by income and race/ ethnicity underly these health inequities (Raphael 2016a). Social inequalities have increased in Canada over the 2000s (Raphael 2016a), thus based on the work of Wilkinson and Picket (2010), both a decline in measures of health and an increase in social problems can be anticipated based on evidence from other wealthy developed nations.

3.2

Explanations for the Impact of Social Inequalities in Childhood

Bartley (2004) and Raphael (2016a) described five explanations for the relationship between social inequalities, ECD, and health outcomes including: (a) material, (b) cultural/behavioral, (c) psychosocial, (d) lifecourse, and (e), political economy explanations. Added to this list is the developmental and neuropsychological explanation theorized by Hertzman and Boyce (2010). From a material explanation, parental income affects many other social determinants of health including access to food, housing, education, recreation, and the quality of the social environment. Cultural/behavioral explanations focus on how cultural and behavioral norms in the family of origin and children’s diets, activities, and exposure to risky behaviors impact health. Psychosocial explanations consider how perceived social status (i.e., a valued or devalued status) and the cumulative effects of early life experiences in the family and social environment (i.e., the trauma of adverse childhood experiences [ACEs]) are linked through toxic stress responses to bodily functions and systems. Lifecourse explanations consider how early life experiences, events, and processes are linked to health and functioning in childhood and across the lifecourse. Political economy focuses on how power relations and political processes in society affect supports and services for citizens, the quality of social relations and environments, and how low family incomes lead to differing health outcomes for children (Bartley 2004; Raphael 2016a). The developmental and neuropsychological expla nation links family income and environments, to differences in parenting and early childhood experiences with stimulation, nurturance, and support which impact brain development (Hertzman and Boyce 2010). Additionally, exposures to adverse experiences in early life may increase the probability of exposures to adverse experiences later in life (Hertzman and Boyce 2010). Next, ECD and child health outcomes will be considered in relation to the impacts of SI/SE due to child poverty, racism, and discrimination.

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Child Poverty

Family income in childhood is a marker for the circumstances of everyday life in which children are born, live, and grow (WHO 2008). There is now a large body of evidence that, within countries, family income is associated with a social gradient in child health – children in the lowest-income group have poorer health outcomes in comparison to children in higher-income groups (WHO 2008). Child poverty is associated with higher rates of food insecurity, lower quality housing, greater exposure to and risk of adopting risky health behaviors, limited opportunities for participation in recreation (Raphael 2016a; Shaw et al. 2006), lower school readiness and achievement, higher rates of social problems, and poorer health outcomes in adulthood (Hertzman 1999; Hertzman and Boyce 2010). Child poverty and social exclusion systematically limit children’s opportunities for participation and development and impact health and well-being across the lifecourse (Hertzman 1999; Hertzman and Boyce 2010). Poverty involves multiple and intersecting domains of social exclusion for children and families (Yanicki 2016). These domains include material, economic, relational, institutional, moral, and cultural exclusion. Material exclusion or absolute material deprivation results in difficulties meeting basic needs for food, transportation, clothing, and shelter (Reid 2004; Sen 2000). Economic exclusion or financial constraints limit participation in community life (Stewart et al. 2008). Relational exclusion results in exclusion from participation in valued activities, constraining opportunities for child development through limited social relationships or social isolation (Reid 2004; Stewart et al. 2009). Institutional exclusion involves practices, policies, and processes at an organizational level that systematically limit access to needed resources and devalue groups of people (Reid 2004). Moral exclusion reflects a sense of being judged as undeserving or of lower worth, or a sense of stigma awareness based on physical characteristics (Reutter et al. 2009). Stigma awareness and negative remarks from others may be internalized causing shame, low self-esteem, a negative social identity (Reutter et al. 2009), and self-isolation (Sen 2000). Cultural exclusion involves stigmatizing, stereotyping, and devaluing a group of people as deviant from dominant social norms (Reid 2004). While many people may associate child poverty with material deprivation, in reality, intersecting sources of social exclusion limit poor children’s opportunities for participation, development, and well-being. All of these types of exclusion need to be considered to create conditions for children to be included and flourish.

3.4

Racism and Discrimination

Race is a social construct in which people are categorized and valued or devalued by their physical characteristics. While race can be viewed as an invalid social construct, race matters. Racism in Canada needs to be understood within the context of Canada’s history of colonialism – policies of assimilation that devalued Indigenous cultures, residential schools that created historic trauma, and treaties that displaced

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First Nations peoples from their traditional lands onto reserves and created enduring social inequalities, as well as neocolonialism that fails to systematically address more covert forms of institutionalized racism (Varcoe et al. 2019). Racism involves exclusionary relational processes, structures, and systems that devalue a group of people based on racial features or group characteristics (Anderson et al. 2003). Racialization is as relational process that devalues and subordinates group differences by race/ethnicity, religious beliefs and language, and structural process that results in systematic disadvantage (Galabuzi 2016; Varcoe et al. 2019). Eurocentrism devalues and undermines differences from dominant social norms and maintains processes of privilege in society (Reimer Kirkham 2003). Canada’s official policies uphold equity and justice for all. Yet, the impacts of the relational process and structures that sustain racism and discrimination as sources of exclusion in society have been underexamined. Henry (2010, cited in Varcoe et al. 2019) described this contradiction in social policies as liberal democratic racism. For example, in Canada’s national social surveys, the term “visible minority” – non-Indigenous persons who are “non-Caucasian in race or non-white in color” is used in place of measures of race or ethnicity (Statistics Canada, 2011, as cited Varcoe et al. 2019, p. 247). In contrast, Varco and colleagues noted that in the USA, “race” is measured in social surveys, while in the UK, “ethnicity” is measured. Canada has only recently begun to systematically collect data and report on the inequalities experienced by specific racialized groups (PHAC and PCPHN 2018). Promoting respect for and recognition of diversity is a foundation for equality, social inclusion, and children’s opportunities for participation in community life, while addressing social exclusion is required to address the social inequalities that lead to unequal opportunities for participation and child development. From a critical cultural perspective, culture can be understood as a dynamic relational process involving patterns of behavior, values, and beliefs (Browne et al. 2005) and ways of life. Thus, the focus of social inclusion discourse has been on respect for and recognition of diversity and equal citizenship, while the focus of social exclusion discourse has been on social and health inequities, particularly social inequalities by income and race/ethnicity, and the concepts of racism, discrimination, and racialization. How do experiences of racism and racialization in daily life create patterns of health inequities over the lifecourse? From a developmental perspective, the concept of biological embedding has been used to explain how experiences “get under the skin” to create health impacts. Repeated experiences in daily encounters impact development through the quality of the social environment and parenting practices through the quality of “stimulation, support and nurturance” provided (Hertzman and Boyce 2010, p. 332). Additionally, from an epigenetics perspective, early experiences impact brain development and the expression of genes through biological embedding; differing experiences lead to functional or dysfunctional systems, and differences in learning, behavior, and health outcomes across the lifecourse (Hertzman and Boyce 2010). Early life experiences of SI/SE and opportunities or barriers to participation may lead to impacts on child health and development in nonlinear, nonspecific, iterative, and recurring ways (Hertzman and Boyce 2010).

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Social causation is nonlinear in that early childhood experiences of SI/SE may involve reoccurring exposures to both supportive interactions and salutary social conditions and to adverse social relations and damaging conditions. Additionally, complex interactions due to intersecting forms of exclusion may have delayed or cumulative impacts on health and well-being. Hertzman and Boyce (2010, p. 336) suggest that it may be the meaning of encounters in relation to the individual’s “selfworth, social position and respectability” that lead to the “biological effects of racism” on gradients in developmental and health outcomes. While poverty and racism intersect and lead to social exclusion, equity actions can improve the developmental and health outcomes of children living in low-income and ethnoculturally diverse families. Gradients in child development can be altered by supporting the social inclusion and participation of children in community life, preventing exposure to adverse early life experiences, supporting children’s experiences of attachment, support, and stimulation (Hertzman and Power 2003; McCain and Mustard 1999), improving children’s social environments, reducing socioeconomic disadvantage, collaborating on CD efforts, offering programs for ECD and parenting support, and strengthening healthy public policies (Raphael 2016a). A Canadian research study is presented next to describe a CD approach to addressing the SI/SE of children and families in a rural setting.

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Equity Action to Address Inclusion and Exclusion in a Canadian Study

In this section, the research project conducted by the author will be presented to provide an example of equity action to address inclusion and exclusion in a rural Canadian setting. Research design. A focused critical ethnographic study was conducted in 2011 to explore the experiences of SI/SE of parents and grandparents with young children/ grandchildren, and the strategies used to promote participation, and address SI/SE in a rural western Canadian community (Yanicki 2016). This study applied Carspecken’s (1996; Yanicki 2016) critical ethnographic methodology and was guided by a group of Pikani and Kainai Elders (from two nearby Blackfoot First Nations). Data collection strategies included observation, a survey, interviews, focus groups, and field notes. The Integrated Framework was used as a conceptual framework to guide exploration of SI/SE (Yanicki et al. 2015). Other key concepts examined included participation, CD, and social justice. Yanicki (2016) examined parents and grandparent’s lived experiences of SI/SE, and the relational processes and social interactions associated with SI/SE, within the context of a Family Center’s programs and collaborative activities in a small rural town. The research questions were: (1) How was SI/SE experienced by parents and grandparents with young children/grandchildren participating in the programs and activities of a rural Family Center? (2) What processes and conditions enabled or constrained the participation of and social inclusion of low-income and Indigenous parents, grandparents, and children in community life?

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Context. The study was conducted in a town with a population of over 3000 residents. Children from both the surrounding rural farming communities and two nearby First Nations communities participated in programs and attended school in this community. Issues of a social divide by income and race/ethnicity (Dobek 2004; Yanicki et al. 2015) and growing child poverty were raised in the community in the 1990s. A group of teachers, nurses, Indigenous community workers, and community members formed a coalition in 2000 to begin their CD efforts. A school feeding program was developed through intersectoral collaboration to address food insecurity at community schools. Inclusion was promoted and poverty stigma and racism were addressed through local awareness campaigns. Over time, the coalition merged with a local Family Center to offer ECD and parenting programs along with a range of CD strategies. At the time of study data collection in 2011, the Family Center and their community partners had completed 10 years of CD and program development in this rural community and the Family Center became a registered charity. (The Family Center is now a regional hub supporting the inclusion and well-being of children and families. See the resources section for a new government framework for child and family well-being in Alberta, Canada.) Methods. Observations were conducted with participants’ consent during preschool programs and community kitchens of the Family Center in 2011 (Yanicki 2016). Following observations, a purposeful sample of parents and grandparents was recruited for individual interviews and focus groups. Parent and grandparent participants (n ¼ 17) were recruited from varied incomes (low income, middle, or high incomes) and ethnocultural backgrounds (including Caucasian and self-identified Indigenous participants). (The term Indigenous used here refers to the first peoples of Canada including First Nations, Inuit, and Metis peoples; there are 50+ First Nations and First Nations languages in Canada (Indigenous Services Canada 2020).) All had participated in the Family Center for at least 6 months, and spoke English. Two interviews (n ¼ 14) and two focus groups (n ¼ 5) were conducted with a total of 17 parent/grandparent participants. A participation survey (a checklist of programs and activities attended by participating families and children) and a demographic questionnaire were completed at the first interview with parent/grandparent participants. The first interview explored perspectives on participation and experiences of SI/SE. The second interview explored community participation and sense of belonging. Member checks were conducted during interviews to clarify shared meaning. Key informants (n ¼ 12) were recruited from current and past staff of the Family Center, the board, and volunteers to describe the collaborative CD efforts, programs, and activities used to address SI/SE in this community over time. Key informants participated in one interview and one focus group. All interviews and focus groups were audio recorded and transcribed verbatim. Both content and thematic analysis were conducted. What were the main findings? A limited summary of results is presented here (Yanicki 2016). The supports and barriers to participation reported by parents and grandparents and the strategies described to enable child and family participation and to address barriers to participation for low-income and Indigenous children and families are described to follow. Thirteen programs, activities, and events were

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identified that parent and grandparent participants and/or their children or grandchildren had taken part in during the previous year. The programs and activities identified included: community events (i.e., a family skate), community kitchens, children’s story time, children’s summer programs, a school-based clothing exchange, the good food box, parenting classes, preschool developmental screening, preschool programs, school breakfast or lunch programs, the secret Santa program, a skate and helmet loan program, and volunteer activities (i.e., leading cultural programs). Key informants described five key strategies to promote participation and inclusion and three key strategies to address the exclusion of children, parents, and families. The key strategies to address SI/SE are described to follow. The supports and barriers to participation and SI/SE identified from parent/ grandparent interviews are presented in Table 2 (Yanicki 2016, p. 122). (Table 2 was reprinted with permission of the author from a PhD dissertation (Yanicki 2016, p. 122).) Supports and barriers to participation were identified at intrapersonal and Table 2 Summary of parent and grandparent identified supports for and barriers to participation Supports for participationa Intrapersonal factors Feeling comfortable, welcomed, and accepted Feeling proud or honored for sharing cultural knowledge or making a contribution Feeling grateful for programs and services Having a sense of shared identity

Interpersonal factors Welcoming behaviors of others Respectful interactions getting to know people and making friends Receiving and giving support sharing parenting strategies, encouragement, and childcare Maintaining confidentiality Interacting across groups Attending with a friend or as a family Organizational factors Program design free, accessible programs Staff approach making personal contact, linking community programs, engaging low income, Aboriginal parents and youth, and inviting volunteers Staff competencies building trusting relationships and being knowledgeable about parenting, First Nations language and culture Program focus promoting group diversity, cultural appreciation, and First Nations cultural activities a

Barriers to participation Intrapersonal factors Feeling uncomfortable, shy, judged, intimidated, embarrassed, or overwhelmed Feeling mistrustful of others Past experiences of trauma, bullying, or racism Feeling self conscious of differences or stigma related to income, race/ethnicity, age, marital status, or spiritual beliefs Interpersonal factors Negative action of others gossiping, making negative comments, asking intrusive questions, leaving people out, and lack of welcoming behavior Closed social networks cliques, difficulty making friends, insular cultural, and religious groups and racial barriers Experiences of loss, conflict, bullying, or racism Structural factors Geographic rural location and added travel costs Financial lack of transportation, program fees, low paying jobs, and food insecurity Lack of access services and postsecondary education Community attitudes and racism

Reprinted with permission of the author (Yanicki 2016, p. 122)

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interpersonal levels. Additional supports were identified at the organizational level, while structural barriers were also identified at community and societal levels. Intrapersonal factors included experiences, feelings, and internal responses to interactions and social conditions. Interpersonal factors involved social interactions with members of the community. Organizational factors involved interactions with program participants and staff, and organization policies and routines. Structural factors included the community and social conditions influencing everyday life and structural barriers related to socioeconomic, ethnocultural, historic, and political contexts. Overall, organization factors were the most commonly identified supports for participation, and interpersonal factors were the most commonly cited barriers to participation in this study. Levels of participation reported by parents’ and grandparent’s (and their children) varied within three relational patterns (Yanicki 2016). Patterns of SI/SE included: (a) permanent strangers, (b) newcomers, and (c) boundary crossers. Interestingly, low-income and Indigenous parents and grandparents were represented in all three relational patterns as follows: • Permanent strangers (n ¼ 4/14) all reported having low incomes and three of four reported an Indigenous identity. Participants in this pattern described a dominant pattern of nonparticipation (self-exclusion), reported limited participation with their children or grandchildren in programs and activities, and had a provisional sense of inclusion or belonging. • Newcomers (n ¼ 4/14) reported having low or middle incomes and three of four were non-Indigenous participants. Newcomers actively sought to participate in programs and activities with their children or grandchildren and reported feeling welcomed. While newcomers reported having a sense of group belonging, they also reported having difficulty making friends in the community. • Boundary crossers (n ¼ 6/14) included two low-income and four middle- or highincome participants, and four of six participants reported an Indigenous identity. Boundary crossers reported participating with their children or grandchildren in mixed groups that included diversity by income, age, and ethnocultural background and activities were located in multiples settings. Most boundary crossers reported having a sense of inclusion and belonging within the community and reported being aware of stigma or difference. Transitions in relational patterns were reported by parent and grandparent participants in relation to their participation in Family Center programs and/or community activities over time (Yanicki 2016). Permanent strangers reported a transition from nonparticipation to periodic participation. Newcomers reported being able to join and participate in programs and community activities. Boundary crossers reported increased engagement and participation in community life. Developing trusting relationships with an Indigenous community outreach worker (a change in social relations) and having access to free or subsidized programs (opportunities in the environment) were commonly identified as having supported a transition in relational patterns. Internal shifts were reported by participants in their attitudes, self-

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perception, interests, awareness, or identity over time through taking part in Family Center programs or community activities; participants suggested that internal shifts had supported their transitions from one relational pattern to another. Differing types of participation were reported by parents and grandparents as having supported their transition from one relational pattern to another (Yanicki 2016); a few examples are described to illustrate these transitions. Cultural partic ipation – participation in valued cultural activities lead by Indigenous staff or volunteering by a parent/grandparent to lead cultural activities – supported changes in self-esteem, self-perception, and social esteem among permanent strangers. For mal programs helped newcomers to build social connections. One newcomer, a Caucasian middle-income mother, described feeling isolated as a rural resident who was new to the area. Volunteering in preschool programs with her children and her children’s sports program participation assisted this newcomer to gain a sense of belonging. Community kitchen participation in mixed groups was cited by several participants as having supported transitions. One low-income Indigenous grandmother reported that participating in a community kitchen helped her to regain a sense of spiritual balance and to move from self-exclusion to the boundary crosser pattern. Support and outreach – home visits from the community outreach worker – and participation in parenting, preschool, and a community kitchen programs enabled one young Indigenous mother to challenge her stigmatized identity as a teen mother. Volunteering in a preschool program and feeling welcomed by others helped one middle-income Indigenous mother to transition from group belonging to gaining a sense of community belonging. Key informants described multilevel strategies to promote inclusion and address exclusion based on their experiences in CD activities and program development in this community. Strategies to enable participation and promote inclusion (see Table 3, adapted from Yanicki 2016) included: (a) building trust and positive interactions through outreach by an Indigenous community support worker; (b) creating opportunities for multiple forms of participation by creating welcoming programs with small group sizes and inviting participants to volunteer; (c) providing accessible, culturally acceptable, safe programs by offering free or subsidized programs for low-income participants and promoting respect for cultural diversity; (d) promoting diverse participation in universal programs by inviting families from differing income, age, and ethnocultural groups to participate; (e) building capacity and intersectoral collaboration across agencies in the community and partnering with nearby First Nations agencies; and (f) promoting an inclusive and welcoming community by raising community awareness and appreciation of First Nations cultures, and respect for cultural diversity (Yanicki 2016). Key informants also identified strategies to reduce barriers and address exclusion (see Table 4, adapted from Yanicki 2016): (a) reducing financial barriers for children’s participation through recreation subsidies and equipment rental programs, and relieving poverty and food insecurity through school feeding programs, clothing exchanges, and good food boxes; (b) reducing poverty stigma through community awareness and mobilizing collective action, and by linking families to programs and resources; and (c) reducing racism and discrimination by supporting respect for

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Table 3 Key equity action strategies to promote inclusion SI/SE equity action themes Recognition Build trust with families and children

Socioecological levels

Key informant’s strategies to promote social inclusion and social justice (relational and structural)

Intra and interpersonal

Positive interactions Targeted outreach to low income Indigenous families

Provide assessable, culturally acceptable, and safe programs

Organizational community

Mutual respect Reduce intrapersonal barriers Provide culturally sensitive support Hire culturally diverse staff (i.e., Indigenous) Create welcoming programs Create culturally acceptable programs Partner with First Nations communities

Organizational

Invite the participation of children and families (capability development)

Organizational

Invite shared leadership Create mixed groups

Invite contributions and reciprocity Create opportunities for meaningful participation (in valued activities) Create safe social spaces Promote diverse participation

Capabilities Create opportunities for multiple forms of participation

Promote diverse participation in free universal programs

Equality and citizenship Intra and Build capacity and interpersonal intersectoral collaboration Organizational Community and society

Promote an inclusive and welcoming community

Community and society

Build collaborative relationships Build trust across organizations Build partnerships and intersectoral collaboration Promote respect for diversity Media advocacy Advocacy on inclusion (inclusive policy)

Invite cultural contributions and participation Offer cultural programs and activities Partner with culturally diverse professionals and organizations

Create opportunities for families and children to engage and contribute Link community organizations Offer free collaborative community events Joint planning and shared vision Apply for external funding with partners

diversity through advocacy and public policy. For more information on CD, programs, services, and intersectoral collaboration to address SI/SE see Yanicki (2016). What did this study reveal? Overall, this study suggested that long-term intersectional collaboration and CD efforts may be required to support participation and address SI/SE in a rural community that has experienced a social divide (Yanicki

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Table 4 Key equity action strategies to address social exclusion SI/SE equity action themes Recognition Reduce poverty stigma Reduce racism and discrimination (relational) Promote diverse participation in cultural activities

Capability Link families to programs and resources (capability development)

Socioecological levels

Key informants reported strategies to address social exclusion and social injustice (relational and structural)

Intra and interpersonal

Respect Direct invitations

Organizational

First Nations community Support Worker outreach Cultural congruence Culturally sensitive support

Community and societal

Offer cultural events Invite youth leadership to address racism and discrimination

Intra and Interpersonal

Link low income and Indigenous parents and children to programs and resources Free children’s programs and resources Community kitchens Mixed groups (interactions across difference) Intersectoral collaboration

Promote diverse participation

Reduce financial barriers Link low income parents and children to programs and resources Create free programs with intersectoral partners

Promote diverse participation

Organizational

Community and societal Equality and citizenship Intra and Reduce financial barriers for children’s interpersonal participation Relieve poverty and food insecurity Organizational Link families to programs and resources (equity in access) Community and Reduce racism and societal discrimination (discourse)

Build community acceptance and support for (action) on poverty and SI/SE Promote respect for Indigenous cultures

Reduce poverty stigma and racism (interactions) Promote diverse participation Promote respect for diversity Promote respect for Indigenous cultures Reduce poverty stigma and racism (relational) Intersectoral collaboration Promote respect for Indigenous cultures Youth led advocacy to oppose racism (policy)

Enable collective contributions (clothing exchange)

Invite church and community volunteers

School feeding programs, recreation subsidies, clothing exchange Public discourse on SI/SE, and the socioeconomic and political context Public discourse on racism, SI/SE and historic context (colonialism)

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2016). Parents and grandparents identified barriers to SI/SE across multiple levels of interaction in this community. Key informants also noted that the diversity of participants in Family Center programs and activities also had increased over time. Differing strategies were needed to support participation within the most excluded group (permanent strangers) in comparison to newcomers and boundary crosser. Overall, the Family Center’s CD efforts and programs sought to addressed SI/SE as a dialectical multidimensional concept. The transitions in relational patterns reported in this study reflected a meaningful change in social relations (Yanicki 2016) in comparison to the social divide identified in 1999 (Dobek 2004; Yanicki et al. 2015). This study provided support for the Integrated Framework with a focus on the SI/SE dialectic as matters of (in)justice, and suggested that equity action may require sustained multilevel strategies to address SI/SE. Overall, while specific relational patterns of participation may differ across settings and contexts, the conceptualization of SI/SE and the principles of multilevel equity action identified in this study can help to inform future program development and health equity research to address SI/SE (Yanicki 2016). Equity action. This research study raised several issues for equity action that warrant further research. • First, multilevel CD approaches may require an extended period of engagement by local community leaders to support multilevel change and equity action on SI/SE. In this study, CD equity actions occurred over a 10-year period to: build community support for children in poverty, shift community attitudes, identify and reduce barriers to child and family participation, create new opportunities for child and family participation through interagency collaboration, and build support for policies opposing racism and promoting inclusion. See the resources section at the end of the chapter for more information on CD and intersectoral collaboration. • Second, in this study, specific types of equity action supported transitions in relational patterns for low-income and Indigenous participants. Equity actions for this group included: employing Indigenous staff for outreach to low-income and Indigenous families to establish trust; offering free programs to reduce financial barriers for participation; and engaging Indigenous parents and grandparents as volunteers to lead valued cultural activities in small group programs. • Third, social exclusion may be experienced across multiple forms of difference, particularly in rural communities where social closure may limit opportunities for social connections. • Four, multilevel multidimensional approaches to address SI/SE were described by all key informants; a focus on addressing exclusion and promoting opportunities for inclusion enabled improved participation in Family Center programs by low-income and Indigenous parents, grandparents, and children. The multilevel multidimensional approaches to equity action in this study war rant further research or pilot projects in rural communities in other settings and contexts.

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Global Examples of Health Equity Action

While patterns of social inequality and exclusion occur in all societies (WHO 2008), strategies for equity action to address SI/SE need to address the experiences and needs of specific disadvantaged groups within their community and societal contexts. Next, examples of global health equity efforts to address SI/SE for children and families are explored from the USA, Australia, and New Zealand. See Table 5 for a comparison of selected indicators related to child well-being for these countries in comparison to Canada (adapted from UNICEF 2020).

5.1

Frameworks

5.1.1 An American Framework The Robert Wood Johnson Foundation’s (RWJF) Culture of Health Equity (CHE) Framework (Braveman et al. 2017; Plough 2015) proposed to create equality of opportunities to support health for all. “Health equity means that everyone has a fair and just opportunity to be as healthy as possible” (Braveman et al. 2017, p. 2). Opportunities involved having access to needed goods and services, and the benefits of participating in society. Equality of opportunity, in the CHE Framework, was conceptualized at a societal level as fairness and justice (Whitehead 1991; Braveman et al. 2017) in access to the resources and social conditions needed for health (WHO, 2008). The needs of Table 5 Selected social, health, and economic indicators by country (adapted from UNICEF 2020) Child Child well being Conditions for poverty Unemployment outcomes child well being (ranking out 2007 2019 (ranking out of (ranking out of of 41 rich (ranking out of Country 38 rich nations) 41 rich nations) nations) 41 rich nations) Australia 32 18 15 22 Canada 30 23 26 26 New Zealand 35 20 32 17 USA 36 29 38 11 Definitions of measures Innocenti Report (UNICEF 2020) Child well being Measures of life satisfaction, suicide rates in adolescence, overweight, outcomes child mortality, social skills, and academic proficiency Conditions for child Social policies on child poverty, parental leave, ECD, childcare, well being adolescents out of school (and not in training or employed), immunization, and low birth weight Child poverty Relative poverty measure of children living in households (by composition and size) with incomes below 60% of median per capita income, reflecting the effectiveness of a country’s taxes and transfers in preventing child poverty Unemployment The share of the workforce (15 64 years of age) without work and actively seeking employment

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marginalized and excluded groups were given priority (Rawls 1971; Braveman et al. 2017), and they were engaged in planning and equity interventions. Equity actions addressed poverty and discrimination, and created opportunities for fair access to societal resources by addressing the social determinants of health. The key determinants of health considered were education, employment, environments and housing, health care, and SI/SE. To monitor progress on health equity, health outcomes need to be compared for specific disadvantaged groups in comparison to nondisadvantaged groups (Braveman et al. 2017; Williams and Mohammed 2013). The key steps for equity action in the CHE Framework (Braveman et al. 2017) included: (a) identify the disparities in health of most concern to stakeholders and inequities in access to resources and opportunities for disadvantaged groups; (b) identify practices, policies, systems, laws, and unfair social conditions that need to be changed to enable optional health; (c) evaluate equity impacts on health outcomes at short-term, intermediate, and longer-term levels; and (d) reassess strategies and plans for equity action over time. The guiding principles of the CHE Framework (Braveman et al. 2017) were: (a) remove obstacles and increase opportunities for health for all, b) consider equity in all policies, systems, and environmental improvements, (c) assess social and health inequities – including living and working conditions and access to resources (opportunities to be healthy), (d) address the needs of the most disadvantaged groups in society with the least access to resources, to improve health for all, (e) focus on sustained multidimensional approaches, rather than short-term single-factor approaches, (f) address both overt discrimination and unconscious or implicit bias in policies and structures that result in discriminatory effects, (g) measure inequalities and health outcomes to evaluate the effects of policies and programs, and (h) invest in enduring systematic efforts to embed equity as a shared value within society (Braveman et al. 2017).

5.1.2 Australian Frameworks The VicHealth’s (2013) Fair Foundations (FF) Framework has been applied to examine early childhood health inequities to identify opportunities for equity action in Australia (Moore et al. 2015). The FF Framework is a planning and conceptual framework adapted from Solar and Irwin (Solar and Irwin 2010). This Framework considered inequities at multiple levels: (a) societal – socioeconomic, cultural, and political levels; (b) daily living conditions – pre- and postnatal, family, physical and social environments, and service access impacts on ECD; and (c) individual – knowledge, attitudes, and behaviors (Moore et al. 2015). The National Aboriginal and Torres Strait Islander Health Plan (NATSI-HP) focused on achieving health equality for ATSI Australians (Australian Goverment 2013). The NATSI-HP Framework included a focus on: (a) recognition of culture, (b) Indigenous control and access to culturally safe, nondiscriminatory health-care services, (c) targeted approaches to improve ECD and promote social and emotional health, (d) addressing environmental, economic, and social inequalities, (e) and addressing racism as a determinant of health (Australian Goverment 2013).

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Based on the FF Framework, Moore et al. (2015) made four observations about equity at a societal level. First, few effective strategies have been identified to reduce the gap between the most disadvantaged children and families and the most advantaged. Second, the complex and intractable problems associated with poverty and social inequalities require changes in governance and decision-making; bottomup approaches involving stakeholders in collective action are helpful to address the impacts of child poverty within local contexts. Third, multilevel, multifaceted strategies for equity action were recommended (Moore et al. 2015). Fourth, public attitudes can constrain the development of public policies to promote child health and well-being. In Australia, ECD is largely viewed as a private matter (parental responsibility) rather than a public matter; raising awareness of the importance of ECD as a social determinant of health may be needed to build public support for greater government investment in the early years (Moore et al. 2015). See the next section for examples of the effective policies and programs identified in this review.

5.1.3 New Zealand Frameworks What is striking about New Zealand’s focus on equity action is the important role played by the Te Tiriti o Waitangi (Te Tiriti o Waitangi – the Māori language version is referred to as Te Tiriti ‘the treaty’ in this chapter) [The Treaty of Waitangi] (Archives New Zealand 1840; Came et al. 2017). Historically, Māori health has been negatively impacted by colonization, loss of traditional lands, Eurocentric policies, and high rates of poverty. However, three principles of Te Tiriti have guided recent equity actions to improve Māori health and well-being: (a) article two recognized “Māori control and management of their own resources,” (b) article three identified “the Crown’s protective role” in relation to Māori people and conferred “citizenship rights to Māori,” and (c) a Māori-Crown partnership relationship was defined (New Zealand Government 2018a, p. 18). Durie’s (1994) Whaiora: Māori Health Development (MHD) Framework applied the principles of Te Tiriti to claim that Māori have the right to define health and wellbeing within a Māori world view, Māori health concepts and priorities, and to direct their own health services (New Zealand Government 2018a). Durie (2006, p. 3) identified four dimension of Māori well-being: “taha wairua (spiritual health), taha hinengaro (mental health), taha tinana (physical health), and taha whänau (relationships with family and community).” Durie’s framework proposed a shift from the use of Western concepts and measures to Māori concepts and measures to guide health equity actions in collaboration with Māori people. This framework proposed a paradigm shift in social policy. 5.1.4 Contributions and Limitations of Frameworks The frameworks reviewed in this chapter identified many elements of equity action to promote child and family health. The Integrated Framework addressed SI/SE, social (in)justice, participation, poverty, and racism at multiple levels with multiple interventions. Commonalities across all frameworks included: (a) actions to address social and health inequities and participation, (b) sustained multilevel multidimensional strategies, (c) collaboration across sectors and groups, and (d) most

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included a focus on engaging disadvantage groups. A specific focus on the SI/SE dialectic was not always considered. The CHE Framework described steps and processes for initiating equity action at a societal level. The FF Framework added a focus on equity action to address early childhood development and prevention of ACE. The NATIS-HP included a focus on addressing environmental, economic, and social inequalities, and addressing racism as a determinant of health. The MHD Framework added a focus on equity action from an Indigenous perspective to address social health inequities for Māori at individual, family, and collective levels. Each framework applied equity action in a specific country context, yet a focus on the elements or dimensions of equity action may be applicable across settings and contexts.

5.2

Evidence-Based Policies and Programs

5.2.1 American Examples The policy statement by the American Academy of Pediatrics [AAP] (2016) provided an overview of the effectiveness of equity action strategies to address child poverty in the USA. Equality of opportunity is noted as an ideal for social mobility and intergenerational betterment in the USA. However, the wealth and opportunity gaps between rich and poor have continued to widened and opportunities for the poor have declined. The Policy Statement on Poverty and Child Health (AAP 2016) identified a number of policies and programs that improved health equity in the USA that may be adapted to other contexts and settings. Ameliorating the adverse effects of poverty in early childhood was a key focus (AAP 2016). SI/SE was not a main focus, however, the social policies and evidence-based programs identified addressed equity and the conditions needed to promote child health and social inclusion. Two federal government policies were associated with positive outcome for health equity (AAP 2016). One federal tax policy, the Earned Income Tax Credit (EITC), helped to reduce poverty by supplementing the income of low-wage workers and incentivizing parent employment. It was estimated that this policy “lifted 3.1 million children out of poverty in 2011” (Center on Budget and Policy Priorities 2013, p. 3). Raising the minimum wage was associated with reduced rates of child poverty and improved household financial stability and meeting basic needs, and improved child school readiness and academic performance (Dube 2018). Several targeted home visiting programs in the USA improved health outcomes for children living in poverty (AAP 2016). In the USA, Head Start (for families with 3- to 5-years-old children) and Early Head Start (for pregnant women and families with children 3 years of age) are federally funded community-based programs to reduce the impacts of child poverty (AAP 2016). Head Start programs provided nutritional and prenatal education, adult education, housing assistance, job training and social services (US Department of Health and Human Services 2020). Early childhood interventions (EDIs) are thought to mitigate the toxic stress associated with living in poverty by improving opportunities for stimulation, nutrition, and

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nurturance. ECIs have a high return on investment of $1.80 and $17 for each dollar spent (Karoly et al. 2005, p. 1). Unfortunately, many low-income families with young children in the USA were not served by the Head Start and Early Head Start programs. A number of home visiting programs for at-risk families with young children have demonstrated positive outcomes (AAP 2016). First, Maternal, Infant, and Early Child Home Visiting (MIECHV), another federally funded program, promoted maternal/newborn health and focused on preventing adverse childhood experiences (ACEs). This program incorporated 19 evidence-based interventions. The program outcomes measured included: improved school readiness and family income, increased connection to community supports and resources, and reduced domestic violence and crime rates (US Department of Health and Human Services 2020). Second, the Nurse Family Partnership program provided weekly visits to low-income high-risk mothers during pregnancy and the early years. This program reported evidence from longitudinal studies and reported a benefit-cost ratio of 5.68 to 1.67 (Olds 2006). Third, The Perry Preschool Program focused on disadvantaged children, early identification of families in need, and evaluated long-term impacts (Schweinhart et al. 2011). This program provided nutritional supplements, supported early child development, and provided socioemotional support for parents. The program cost benefits (saved in health and social costs) were $12.90 per $1 invested (Belfield et al. 2006). Overall, targeted ECI programs supported protective factors in childhood, stable parenting, stimulation, and nurturing caregiving and were thought to have had positive impacts on attachment, and children’s endocrine regulation, brain development, self-regulation, and stress responses (AAP 2016; Belfield and Levin 2012; Johnson et al. 2013; Shonkoff et al. 2011). Evidence-based programs can be evaluated for adaptation in other settings and contexts.

5.2.2 Australian Examples Moore and colleagues noted that policies may have both positive and negative impacts on disadvantaged families depending on the social context (Moore et al. 2015). Monetary policies that provide income supplements to low-income families may be less effective than programs that are intensive, long term, and include both financial and support services (Huston et al. 2005; Moore et al. 2015). High-quality early childhood education centers (ECEC) and parenting support programs enhance the development of all children, especially disadvantaged children (Camilli et al. 2010; Durlak 2003; Moore et al. 2015). Welcoming, strengthsbased, inclusive programs involve local partnerships and policies to remove barriers and make it easier for disadvantaged children to participate. Parenting support programs work with parents to support optimal ECD. Parents need to feel supported in their role as parents, have opportunities to enhance their knowledge, and develop their capacity to support their child’s development. Effective programs employed approachable staff, offered a range of services, and provided an option for intensive parent support (Moore et al. 2015). Addressing the health inequalities of Indigenous (ASTI) children and families was included in both Australian frameworks (Australian Goverment 2013; Moore

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et al. 2015). Poverty, housing instability, and poor-quality crowded living conditions were associated with health inequities for ATSI children, particularly those living in remote communities (Jervis-Bardy et al. 2014; Kearns et al. 2013; Moore et al. 2015). Effective strategies to address housing issues utilized an ecological approach, engaged Indigenous communities (Moore et al. 2015; Signal et al. 2007), and applied multifaceted multilevel interventions (Bailie et al. 2011; McDonald et al. 2008; Moore et al. 2015). The Triple P Positive Parenting Program has demonstrated positive parent and child outcomes in Australia and in 13 other countries. Children who grow up with support and warm parenting are more likely to reflect prosocial behaviors despite experiences of poverty (Odgers et al. 2012; Sanders et al. 2014). Triple P applied social learning theory and a population-level focus with universal and targeted or treatment approaches at five levels of intervention: (a) level 1 – messages on positive parenting, (b) level 2 – brief interventions by telephone, face to face, or group, (c) level 3 – focused interventions by telephone or small group, (d) level 4 – 8–10 sessions with an individual, group, or online, and (e) level 5 – enhanced interventions to address specific problems with an individual or group. The cultural acceptability of Triple P has been supported in multiple settings (Sanders et al. 2014). A systematic review and metanalysis of Triple P confirmed both short-term and long-term effects (Sanders et al. 2014). Positive outcomes were reported for: child emotional, social, and behavioral outcomes, and parent confidence, practices, adjustment, and relationships. Each level and modality of delivery of Triple P was associated with positive impacts. While most parenting program research has focused on mothers, a few studies have also confirmed the effectiveness of Triple P with fathers (Sanders et al. 2014). In a population-based study, Triple P was implemented across multiple communities in Australia and compared to case-control communities (Sanders et al. 2008, 2014). Significant improvements were reported in child (22% reduction in behavioral and emotional problems) and parenting behaviors (32% reduction in coercive parenting), reduced stress and depression (26% reduction), and confirmed population-level changes. Triple P has also been implemented in South Carolina, USA, and demonstrated population-level effects in reducing child maltreatment (preventing ACE) (Prinz et al. 2009; Sanders et al. 2014).

5.2.3 New Zealand Examples Shifts in New Zealand policy discourse were evident in the 2000s: Te Tiriti was first named in government policy in 2000, and socioeconomic, gender, ethnic, and geographic inequalities were identified as dimensions of health inequalities (New Zealand Government 2002, 2018a). Both Māori and Pacific peoples have poorer health outcomes in comparison to Pakeha (non-Māori, non-Indigenous New Zealanders), thus issues of institutionalized racism were identified as a key issue for equity action (Came et al. 2018; New Zealand Government 2018a). The Child Poverty Reduction Act (New Zealand Government 2018b) sets targets for overall reductions of child poverty and the Whakamaua; Māori Health Action Plan 2020–2015 outlined a strategy to improve health and well-being base on Te Tiriti and

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principles of tino rangatiratanga – Māori self-determination, equity, active protection, and partnerships (New Zealand Government 2020). New Zealand has a policy of biculturalism; Western and Māori cultures form the Aotearoa New Zealand identity, bilingualism (English and te reo Māori), shared values and bicultural measures are evident in An Indigenous approach to the Living Standards Frame work (New Zealand Government 2019). While this shift in social policies is a promising approach to addressing Indigenous health inequities, Māori health outcomes and rates of child poverty have been slow to change. Collective impact has been used as an approach to address locally defined social inequalities and health inequalities. The Te Pou Matakana program began as an Indigenous response to homelessness in the city of Auckland (Dennis 2019) and developed into Māori whānau ora (family well-being) collective impact initiatives with community partners in 13 communities on the North Island (Te Pou Matakana 2018). Collective impact (CI) focuses on five conditions: a common goal, a backbone organization, mutually reinforcing activities, shared measurement, and continuous communication (Hanleybrown et al. 2012; Kaiwai 2017). These Māori-lead initiatives address the needs identified by participating families. It has been suggested that these CI initiatives may provide a template for Indigenous-lead programs to promote well-being in other settings (Lloyd 2018).

5.2.4 Contributions and Limitations Commonalities across policy and program examples included a focus on reducing child poverty and inequities in ECD, and improving participation and child health. Evidence-based policies and programs included a focus on measuring progress in health equity for specific disadvantaged groups. The AAP (2016) policy statement provided a helpful summary of evidence-based policies and programs to reduce the impacts of child poverty on ECD and child health in the USA. Evidence on the costeffectiveness of policies and programs is important to supporting action to reduce significant childhood inequities. The NATI-HP (Australian Goverment 2013) addressed SI/SE, the relational and structural dimensions of poverty and barriers to children’s participation, and identified effective strategies for working with Indigenous people and communities (Australian Goverment 2013; Moore et al. 2015). A strengths-based focus was named by Moore et al. (2015), and recognition of Indigenous cultural beliefs, parenting practices, and control was evident in the HATI-HP Framework. The Triple P program described parenting programs as a universal program (at individual and population levels), and as targeted or treatment-based programs for high-risk families (Sanders et al. 2014). Triple P has been implemented across multiple cultural groups and countries, and the flexible delivery modalities of Triple P reduce barriers for parent participation. Limitations of Triple P were the use of self-report measures and the lack of description of cultural or country-specific adaptations. While evidence can be generalized from random control trials, local processes and structures of SI/SE need to be considered (Yanicki 2016), and programs need to be evaluated for applicability and transferability (Buffet et al. 2011).

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The New Zealand examples added a unique focus on adapting policies and programs to address the health inequities of Indigenous peoples, with Māori-lead collective impact initiatives to support cultural safety, recognition of cultural identity, and self-determination in programs and services. Collective action examples involved grassroots leadership and collaboration with intersectoral partners consistent with other global examples of equity action; however, the integration of Indigenous world views, language, and cultural practices is unique and warrants further research and evaluation in relation to best practices.

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Conclusion and Future Directions

In this chapter, the SI/SE of children and families experiencing social inequalities due to income and race/ethnicity has been explored as a matter of social justice. The Integrated Framework was presented as a framework that has been supported in one rural Canadian study exploring equity actions to address SI/SE. Examples from the USA, Australia, and New Zealand included equity-based frameworks, and evidencebased policies and programs to address child poverty and racial discrimination. The SI/SE dialectic was not addressed consistently across these examples, however, there were similarities in the equity actions used to address social inequalities by income and race/ethnicity. The examples added to a broader exploration of equity action. The Integrated Framework and Canadian discourses focused on recognition, capabilities, and equality and citizenship as important dimensions for equity action to address SI/SE; similarly, the Australian and New Zealand examples addressed elements of these three discourses. The dominant focus in American examples was on equality and citizenship and capabilities discourses. Future research and program evaluations are recommended to expand understanding of strategies to improve opportunities for the participation, optimal development, and health and wellbeing of all children and families, with a special focus on identifying effective equity actions to address the SI/SE dialectic, poverty, racism, and discrimination.

Appendix 1 Additional Resources Collective Impact Weaver, L. (2014). The promise and peril of collective impact. The Philanthropist, 26(1), 11–19. Retrieved from https://www.collectiveimpactforum.org/sites/default/ files/1-The%20Promise%20and%20Peril%20of%20Collective%20Impact.pdf Community Development National Collaborating Centre for Determinants of Health. (2015). Intersectoral collaboration to address health equity: A curated list. Retrieved from https://nccdh. ca/images/uploads/comments/Intersectoral collaboration to address health equity A curated list EN FV.pdf Health Equity Framework

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Davies, J. K., & Sherriff, N. (2012). The gradient evaluation framework (GEF): Tackling the gradient in health. Retrieved from https://www.academia.edu/3319982/ THE GRADIENT EVALUATION FRAMEWORK A European framework for designing and evaluating policies and actions to level up the gradient in health inequalities among children young people and their families?email work card¼view-paper Wellbeing and Resiliency Framework Government of Alberta. (2019). Well being and resiliency: Evaluation frame work. Retrieved from https://open.alberta.ca/publications/9781460143377

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5

Social Inclusion and Human Rights Ann Taket

Contents 1 Introduction: The Challenges of the Anthropocene . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Human Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Key Features of Human Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Rights to Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Inclusion and Human Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Rights Based Approaches (RBA) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter explores the connections between social inclusion and human rights, demonstrating how closely interrelated they are. The chapter begins with an overview of the human rights that form the basis of the human rights systems at global, regional, national, and subnational levels, and discusses some of their key features. Following this, the chapter examines: rights to participation; social inclusion and human rights; and rights-based approaches (RBAs). Throughout the chapter, a series of seven case studies provide detailed illustrations of rights-based approaches as applied to issues in health and social care research and practice, including a discussion of impact where possible. The case studies present a wide range of different applications of RBAs in different contexts, for different services, and with different population groups. They illustrate the considerable potential of RBAs. In this way, the chapter focuses on the instrumental value of human rights and rights-based approaches in achieving social inclusion and reducing health and social inequities.

A. Taket (*) School of Health and Social Development, Deakin University, Burwood, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_5

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Keywords

Social inclusion · Human rights · Rights-based approach · Participation · Agency · Empowerment · Intersectionality · Climate emergency · Pandemic · Anthropocene · Inequities

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Introduction: The Challenges of the Anthropocene

The purpose of this chapter is to explore the relationship between human rights and social inclusion. The chapter is concerned with the notion of human rights as embedded in the current complex set of interacting human rights systems: the UN global system, various regional systems, and a variety of national and subnational systems. It focuses on the instrumental value of human rights to research related to health and social care, and to health and social care practices. The chapter begins by highlighting the challenges posed by the current context: the Anthropocene, the most recent period in Earth’s history where human activity started to have a significant impact on the planet’s climate and ecosystems. The Anthropocene is manifest in terms of the current climate emergency and the resulting extreme weather events, and in terms of the acceleration in the frequency of pandemics with a zoonotic origin and the current COVID19 pandemic. Both of these present interlinked direct and indirect threats to human health and have been shown thus far to increase health inequities and compromise inclusion (Watts et al. 2021). The challenges of the Anthropocene have been recognized by the UN, with Secretary-General António Guterres urging governments to take six climate-positive actions to recover better from the COVID19 pandemic. The six are: investing in green jobs; no bailouts for polluting industries; ending fossil fuel subsidies; taking climate risks into account in all financial and policy decisions; working together; and most importantly, leave no one behind. Human rights–based research and practice is particularly instrumental in striving to ensure that no one is left behind. The principle of “leaving no one behind” is a key commitment of the Social Development Goals (SDGs), which (United Nations 2015: Preamble): seek to build on the Millennium Development Goals and complete what they did not achieve. They seek to realize the human rights of all and to achieve gender equality and the empowerment of all women and girls. They are integrated and indivisible and balance the three dimensions of sustainable development: the economic, social and environmental.

The SDGs and the set of human rights enshrined in the Universal Declaration of Human Rights that will be discussed in this chapter are closely interlinked. The chapter begins with an overview of the human rights that form the basis of the human rights systems at global, regional, national, and subnational levels, and summarizes their key features. Following this, the chapter contains three main sections: rights to participation; social inclusion and human rights; and rights-based approaches. Throughout the chapter, a series of seven case studies provide more detailed illustrations of some rights-based approaches as applied to issues in health and social care research and practice, including discussion of impact where possible.

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Human Rights

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Notions of human rights can be identified throughout thousands of years of human history and within all the world’s major religions (Levinson 2003). Those interested in a detailed exploration of this history or of the different views about the philosophical foundations of human rights are directed to the detailed treatments in de Baets (2015) and Cushman (2012). The current international human rights system began its life in 1948 (Mertus 2009), following the recognition of human rights in the founding charter of the United Nations (United Nations 1945) as one of the three pillars of UN operations, the other two being: peace and security, and development. Within Western societies, the development of the concept of human rights included centuries during which the “rights of man” covered only restricted subgroups of humans, usually taxpaying male citizens (De Baets 2015). Individuals and groups campaigned for the rights of some groups, such as women and slaves; other “vulnerable” groups received attention through a variety of treaties, but these did not formally recognize any entitlements included as human rights. The League of Nations, established in 1920 in the aftermath of the First World War, and grounded in the broad, international revulsion against the unprecedented destruction of that war, was envisaged as a standing international organization dedicated to fostering international cooperation, providing security for its members, and ensuring a lasting peace (Pedersen 2015). While the League of Nations did formulate pioneering treaties for minorities, refugees, and mandate territories (De Baets 2015), it did not formally recognize human rights (Moyn 2012; De Baets 2015). The UN charter established general obligations applying to all member states of the UN including respect for human rights and dignity. The Universal Declaration of Human Rights (UDHR) was adopted in 1948 (UN General Assembly 1948), as a declaration the UDHR does not have the legal standing of a treaty, so work began on developing more explicit human rights standards and to set in place specific monitoring and reporting mechanisms. An extended period of development resulted in the two International Covenants, the International Covenants of Civil and Political Rights (ICCPR) and the International Covenant of Economic, Cultural, and Social Rights (ICESCR); both were adopted in 1966. The UDHR together with the ICCPR and ICESCR are referred to as the “International Bill of Human Rights.” Building on these, other instruments have been developed, and expanded on rights for particular population groups and issues.

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Key Features of Human Rights

As the UDHR makes clear, human rights are founded on respect for the dignity and worth of each person. They are universal, meaning applied equally to all people, without discrimination, and without exception. They are also inalienable, meaning that no one can have their human rights taken away. Human rights, however, can be limited in specific situations; for example, the right to liberty can be limited if a person is found guilty of a crime by a court of law. Another example, particularly

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relevant in the context of pandemics, is that rights to freedom of movement among others can be restricted to protect public health, this is considered further below. Perhaps the most important feature of human rights is the notion of universality; human rights are the rights of all human beings. The universality of human rights implies that human rights are fundamental to every type of society. Individuals may exercise different rights, or exercise the same rights differently, depending on which group they belong to within society. Relevant different groups include women and children, as well as groups defined by culture, ethnicity, or religion. Even if the form or content of human rights changes over time, the principle of their universality remains constant. Human rights as a set are indivisible, interrelated, and interdependent; individual human rights do not exist in isolation from each other. Consequently, it is insufficient to respect some human rights and not others; if one right is violated, this will often affect respect for several other rights. This, however, does not mean that rights always reinforce one another positively. Sometimes, they complement one another; at other times, there is tension or conflict between them. Sometimes, they are in direct contradiction; for example, the right to a particular cultural or religious practice for one group may clash with the right not to be discriminated against on certain grounds for other groups. Tensions between rights may also occur when they are effectively in competition with each other for limited resources, for example, the rights to a healthy environment, to an education, to health care, or to welfare benefits. A fourth feature of human rights is that they are inabrogable, meaning that they cannot voluntarily be given up or traded for other privileges. Intersectionality is also important. Intersectionality emerged from several theories, including Black feminist, Indigenous feminist, third-world feminist, queer, and postcolonial theory. The term was first coined by American sociologist Kimberlé Crenshaw (1989). Intersectionality demands an examination of rights beyond individual factors such as biology, socioeconomic status, sex, gender, and race, to focus on relationships and interactions between factors and across multiple levels of society. By investigating human rights through the lens of intersectionality, the factors that mean some groups have poorer access to human rights can be examined within the context within which they exist. Such an examination can also allow for the investigation of the role of power and influence from governments, policymakers, families, and communities, among others, in an investigation of the structural influence of discrimination and the prevention of some groups achieving their human rights (Kapilashrami and Hankivsky 2018). Absolute and relative rights can be distinguished. Absolute rights are those where no restrictions or limitations may be placed on them, even if argued as necessary for some public good. Absolute rights include the right to be free from torture, slavery, or servitude; the right to a fair trial; and the right to freedom of thought. The right to life is not absolute; what is forbidden is arbitrary deprivation of life. Note also that the right to freedom of thought or opinion and the right to hold any opinion does not include unlimited right to free expression of opinion. It is qualified by certain restrictions or limitations that are provided by law and that are necessary for (a) respecting the rights or reputations of others, or (b) the protection of national security or of public order, or of public health or morals. This illustrates the complex interdependence that exists between the achievement of rights of different groups

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within the same community. Some articles in the conventions provide guidance on when rights can justifiably be restricted; these are summarized in the Siracusa Principles (ECOSOC 1984), see Box 1. Box 1 The Siracusa Principles

Rights can be restricted if each one of the five criteria below are met, and the restrictions are of a limited duration and subject to review and appeal: • The restriction is provided for and carried out in accordance with the law. • The restriction is in the interest of a legitimate objective of general interest. • The restriction is strictly necessary in a democratic society to achieve the objective. • There are no less intrusive and restrictive means available to reach the same objective. • The restriction is based on scientific evidence and not drafted or imposed arbitrarily, i.e., in an unreasonable or otherwise discriminatory manner.

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Rights to Participation

Social inclusion is recognized in the Bill of Rights through discussion of the human right to participation. Specific rights to participation are set out in many of the international treaties ratified by most countries. Article 25 in the International Covenant of Civil and Political Rights recognizes the right “to take part in the conduct of public affairs” and Article 15 of the International Covenant on Economic, Social, and Cultural Rights recognizes the right of everyone “to take part in cultural life.” In this way, rights to participation in all the different domains of human life – economic, social, political, cultural, and civil – are all included in the Bill of Rights. Participation is also closely involved in the “right to health.” The preamble to the World Health Organization constitution talks about the right to health: “the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being” and Article 25 of the Universal Declaration of Human Rights begins: Everyone has the right to a standard of living adequate for the health and wellbeing of himself and of his family, including foods, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

Article 12 in the International Covenant on Economic, Social, and Cultural Rights also covers the right to health understood as the right of everyone to the highest attainable standard of physical and mental health. The achievement of social health or well-being is dealt with in other articles in the treaty. The United Nations’ General Comment that expands on the right to health (CESCR 2000) explains that the right includes the right to participation in all health-related decision-making at all levels, through from individual care decisions to planning and policymaking.

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Both the International Covenant of Civil and Political Rights and the International Covenant on Economic, Social, and Cultural Rights highlight that such rights are to be enjoyed without discrimination (in Article 2 in both cases), including that each member state agrees to undertake: To respect and to ensure to all individuals within its territory and subject to its jurisdiction the rights recognized in the present Covenant, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

Later treaties together with associated guidance clarify that “other status” includes that due to gender identity, sexuality, disability, and aspects of health status such as being HIV positive or drug dependent. Two case studies illustrate the importance of rights-based approaches in improving inclusion of specific groups of people who often encounter discrimination and exclusion. Case study 1 examines a global campaign to protect the rights of intersex people, and Case study 2 presents an example of the use of the Inter-American Court of Human Rights to protect rights of individuals to self-definition of their gender identity.

Case Study 1 Protecting the Rights of Intersex People: Perfect Just the Way They Are

The UN Free & Equal campaign, launched In July 2013, is a global UN public information campaign aimed at promoting equal rights and fair treatment of LGBTI people. An intersex awareness campaign is being run as a subsidiary campaign, under the title “Perfect just the way they are.” Intersex people are born with sex characteristics that do not fit typical definitions of male and female. In many countries, intersex children are subjected to repeated surgery and treatment to try to change their sex characteristics and appearance, causing physical, psychological, and emotional pain – and violating their rights. The UN campaign calls on governments and parents to protect intersex children from harm. Carpenter (2018) documents the continuing struggle by human rights defenders and NGOs to modify the International Classification of Diseases, ICD-11 codes for intersex people by introducing neutral terminology and by ensuring that all relevant codes do not specify practices that violate human rights. Source: www.unfe.org/intersex-awareness for the UN campaign

Case Study 2 Protecting the Right to Self-Definition of Gender Identity

The regional human rights system in the Americas is operated by the Organization of American States, the main human rights instrument is the American Convention on Human Rights. There are two bodies responsible (continued)

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for the promotion and protection of human rights, through compliance with the American Convention on Human Rights in the Inter-American System: the Inter-American Commission on Human Rights (IACHR) and the InterAmerican Court of Human Rights. One of the roles of the Court is to provide advisory opinions on interpretation of the Convention in particular circumstances. The state of Costa Rica presented a request for an advisory opinion on 18 May 2016, for the Inter-American Court to interpret the protection provided by the American Convention on Human Rights to recognition of the change of name in accordance with the gender identity of the individual concerned. There were also other parts to the opinion requested, not covered here. In the Advisory Opinion, the Court defined gender identity as “the internal and individual experience of gender as each person feels it, which may or may not correspond to the sex assigned at birth.” The right to gender and sexual identity is related to the concept of freedom and every individual’s possibility of self-determination and free choice of the options and circumstances that give a meaning to his or her existence, based on their own options and convictions. The Court asserted that “State recognition of gender identity is critical to ensuring that transgender persons can fully enjoy all human rights.” These include, among others, the right to protection against all forms of violence, torture, and ill-treatment, as well as the guarantee of the right to health, education, employment, housing, access to social security, and freedom of expression and of association. Consequently, the Court considered that the change of name, adaptation of the photograph, and rectification of the mention of sex or gender in public records and on identity documents so that these conform to the self-perceived gender identity was a right protected by the American Convention. Accordingly, states are obliged to recognize, regulate, and establish appropriate procedures to this end. The Inter-American Court also specified the minimum conditions that these domestic procedures should meet. They should be aimed at reflecting the self-perceived gender identity; be based on free and informed consent; not require medical or psychological certifications that would be unreasonable or pathologizing; be confidential, protect personal data, and not reflect changes in gender identity; be prompt and cost-free insofar as possible; and not require providing evidence of surgical and/or hormonal treatments. In addition, the Court concluded that procedures of an administrative nature are those most adapted to these requirements. The Court also clarified that such a procedure need not necessarily be regulated by law. Source: Adapted from Inter-American Court of Human Rights (2018, p. 116–117)

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Social Inclusion and Human Rights

Taket et al. (2014, pp. 3–4), drawing on earlier definitions by Levitas, Popay, and colleagues, (Levitas et al. 2007, p. 9; Popay et al. 2008, p. 2) defined social exclusion as: a complex and multi dimensional process driven by unequal power relationships interacting across four main dimensions economic, political, social and cultural and at different levels including individual, household, group, community, country and global levels. It involves the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities, available to the majority of people in society, whether in economic, social, cultural, or political arenas. It affects both the quality of life of individuals and the equity and cohesion of society as a whole.

This implication of this definition is that the achievement of social inclusion goes hand in hand with the achievement of the full range of human rights. Social inclusion is directly supportive of health. Marmot (2004) summarizes the considerable body of evidence that social standing directly affects health, and identifies the importance of social inclusion, although not using that term directly: “Autonomy – how much control you have over your life – and the opportunities you have for full social engagement and participation are crucial for health, well-being and longevity” (Marmot 2004, p. 2). The notion of empowerment is also closely connected. Alsop (2004, p. 1200) defines empowerment as “the process of increasing capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes.” Evidence on the importance of empowerment for health outcomes comes from the review conducted by Wallerstein (2006) which demonstrates that: empowering initiatives lead to improved health outcomes (both directly and indirectly); participation alone is insufficient without capacity building; and that successful empowering interventions must be created or adapted to local contexts, for example, gender and culture appropriateness. Human rights are strongly linked to the determinants of health, including economic determinants, and the global challenge remains of achieving an economic order that supports human rights and, thereby, promotes health for all peoples. The case study below presents the work carried out recently by Christian Aid and the Center for Economic and Social Rights to explore what a rights-based economy (RBE) would look like (Donald et al. 2020). They argue that the current context provides a unique opportunity to reshape economic and social policy to guarantee the material, social, and environmental conditions necessary for all people to live with dignity on a flourishing planet, without compromising the same conditions for future generations. The RBE centers participation and social inclusion throughout and complements the six climate actions proposed by the UN. Exclusion has adverse effects on health, inclusion (proper inclusion that is) has positive effects on health. Considering the effects of the COVID19 pandemic, a large online survey of Australian women found that the pandemic was associated with an increased risk of violence against women in current cohabiting relationships, most likely from a combination of economic stress and social isolation (Morgan and Boxall 2020).

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Case Study 3 A Rights-Based Economy: Putting People and Planet First

In their report (Donald et al. 2020), the Center for Economic and Social Rights (CESR) and Christian Aid, two international organizations working for human rights and economic justice ask: What would an economy based on human rights look like? The report provides a picture of a rights-based economy (RBE) in three sections. The first section explores how the standards and principles of human rights law give force, flesh, and specificity to fundamental values such as dignity, equity, fairness, solidarity, accountability, and justice, which resonate strongly in current debates around alternative visions of the economy. The second section then considers the shifts required in economic and social policy to embed these values in our economies, covering rights-based approaches in six different areas: comprehensive and universal social protection systems; labor and wage policies; public services; tax policy; corporate regulation; and finally, global economic governance. The third section then outlines the six systemic shifts needed to weave the specific policy changes together, and to fundamentally transform what is produced, distributed, consumed, and valued in our economies, these are quoted in full: • From exploiting and plundering natural resources to respecting planetary boundaries. The RBE nurtures a respect for planetary boundaries and for the lives and rights of future generations. • From a fixation on economic growth to more holistic, ecologically sound and human-centered measures of success. Gross domestic product (GDP) has for too long been the dominant metric of development. The RBE employs measures of progress that value human rights and planetary flourishing. • From taking care for granted to recognizing its place at the center of our societies. The neoliberal economy has devalued, exploited, and taken for granted care and domestic work, overwhelmingly performed by women. The RBE has feminist values at its core, treating care and domestic work not as an “externality,” but as the lynchpin of our societies and economies. • From valorizing the private sector to reclaiming the power of the public. Allowing markets and private actors to direct and dominate the economy has manifestly failed to produce socially or environmentally just outcomes. Expanded universal public health and social protection systems, and coordinated government action to avert the climate crisis will be litmus tests of good governance in the RBE. • From corporate monopolies to worker and community power. Corporate concentration has reached extreme levels. To bring about a rights-based, environmentally just economy, we need to break up corporate power and fundamentally reimagine corporate models and forms. (continued)

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• From elite capture to renewing democracy. The corporate and elite capture of political systems and the spread of authoritarian movements represent profound threats to democracy around the world. But they have spurred worldwide protest and a rise in people’s counter-power. A shift to the RBE requires harnessing this power to democratize and decolonize economic decision-making at all levels: local, national, and global. Source: Summarized from Donald et al. (2020, pp. 5–29)

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Rights-Based Approaches (RBA)

A rights-based approach (RBA) is one that works to help protect and promote rights (McKay and Taket 2020). The first thing considered here is what exactly should be understood by a rights-based approach in health and social care. According to WHO (2002), it has three components, it refers to the processes of: using human rights as a framework for health development; assessing and addressing the human rights implications of any health policy, program, or legislation; and making human rights an integral dimension of the design, implementation, monitoring, and evaluation of health-related policies and programs in all spheres, including political, economic, and social. Singh (2010) identifies four key features or principles of RBAs: the realization of rights without discrimination; the principle of accountability to rights holders by duty bearers; a recognition of the importance of participation in process; and finally, adaptation to the local context. As Potts (2010) identifies, the right to participation is central to the application of rights-based approaches, and the inclusion of individual voices in local decision-making is central to ensuring autonomy and dignity for all (Singh 2010). An expansion of Singh’s principles in the context of a rights-based approach to development programming is provided by Silva (2003) reporting on the common understanding achieved among the different UN agencies working in the field, although some have criticized this. For example, Gruskin et al. (2010, p. 134), refer to it as “a lowest common denominator approach.” A review by Nyamu-Musembi and Cornwall (2004) of the different methodologies associated with RBAs in the field of development argues that RBAs would mean little if they have no potential to achieve a positive transformation of power relations among the various development actors. Gruskin et al. (2010) offer a four-question framework for assessing RBAs to health (with a further set of at least four questions embedded in one of the questions); most importantly, they draw attention to a minimum list of principles that must be included: participation; nondiscrimination; service availability, accessibility, and acceptability; quality; transparency; and accountability. The past 30 years has seen the development of a wealth of different approaches and assessment tools for assisting in the task of ensuring that health policies and

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programs respect, protect, and promote human rights. Worm (2010) examines 17 different approaches to impact assessment in the field of human rights and gender equality, although not all of these explicitly draw on international human rights standards in their conceptual frameworks. Case study 4 presents an analysis of the evidence about the impact of rights-based approaches in seeking to improve the health of women and children. Case Study 4 Implementing a Human Rights-Based Approach to the Health of Women and Children

A WHO monograph (Bustreo et al. 2013) examined evidence of the effects adopting an RBA to women and children’s health. There were two components. 1. The first component looked at the academic literature on participation, human rights, and women’s and children’s health to explore whether women’s participation in design, implementation, management, and/or evaluation of community health services/systems leads to greater access to, and use of, acceptable and quality reproductive, maternal, and child health services, and/or improved outcomes. The review found evidence of an association between women’s participation and improved health and health-related outcomes. It also drew attention to the importance of other RBA principles alongside participation. 2. The second component explored in detail the experience in four contrasting countries: Brazil, Italy, Malawi, and Nepal. Two distinct questions were explored: Has an RBA explicitly shaped the laws, policies, and programs related to women’s and children’s health?; and if so, what is the evidence that these explicitly human rights-based interventions have contributed to improvements in women’s and children’s health? Each of the four countries adopted a different theme for examination. Sexual, reproductive, and maternal health was the focus in Brazil, women’s and children’s health in Italy, children’s health in Malawi, and maternal and child health in Nepal. In each of the four countries, human rights have, to varying degrees, explicitly shaped the laws, policies, and programs related to women’s and children’s health. The studies do not however attribute improvements exclusively to the use of an RBA. Source: Summarized from Bustreo et al. (2013, pp. 18–99)

A study of socially inclusive service development in three contrasting services delivered by a large social care NGO in Melbourne, Australia, is described in case study 5. As Pollock and Taket et al. (2014) discuss, the ongoing analysis of the power relations between and within the different stakeholder groups was crucial in ensuring that the development of the process did not reinscribe oppression and

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marginalization, and instead fostered inclusion. Case study 6 presents a contrasting example, based on a program of work with children with disabilities in Vanuatu and Papua New Guinea.

Case Study 5 Socially Inclusive Service Development in Nongovernment Organizations Delivering Social Care

A large multisector NGO (nongovernment organization) in Melbourne, Australia, provides an example of how a rights-based approach to involving stakeholders can support changes in service delivery that support social inclusion and delivery of outcomes valued by service users and their families. They set out to involve service users and their families in organizational decision-making processes for service development and future service delivery, as equal partners alongside others from within the organization and in the government departments responsible for funding the services. Processes used were designed with intentional vigilance on the operation of power in the local service development context, to counter the tendency to silence some voices and ways of knowing, while privileging others. It also aimed to increase people’s agency in relation to organizational decisions that impacted them, in particular, service users and the frontline staff who worked with them. The initiative comprised a participatory approach to service evaluation trialed in three settings: • Wesley Aged Care Housing Service, a residential aged care service for elders with long-term histories of homelessness associated with mental ill health and/or drug and alcohol misuse (WACHS) • A planning service for people with disability with individualized packages (ISP) • Resilient Kids, a short-term therapeutic intervention for children whose families had experienced homelessness (RK) There was support within the NGO from senior management and the board and willing engagement from the relevant government departments that funded and administered the three selected services, and the work took place in the context of an organization-wide policy on social inclusion and belonging. Everyone involved in the service in each setting was invited to take part, including service users and their families, frontline service delivery staff, middle and senior managers, and government officials. In each location, diverse groups of people were engaged in each stage of the project, and there were multiple ways to take part. People worked within an interlinked governance structure that comprised community and management reference groups, embedded within the organization’s existing governance and line management arrangements. Each service setting used a program logic process (continued)

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as the basis for evaluating the outcomes the service was currently achieving and to ask questions about what could or should be done differently. Participants then worked together to plan for improvement, locally and in the immediate system context. In each setting, groups worked separately and together to make sense of what they learned as the evaluations proceeded and to plan future action. Each of the three settings had a dedicated researcher/ facilitator from within the organization but not involved in the delivery of any service. In each setting, a range of outcomes were delivered to each group of participants (Pollock 2016). Service users and family members reported health and well-being benefits, a greater sense of agency and increased feelings of inclusion. Staff, managers, and government officials gained insights into their service delivery that were not available to them through other channels and were able to make practical changes to service delivery on the basis of this new knowledge. At the completion of the initiative, all participants were invited to take part in an interview that formed part of Pollock’s study (Pollock 2016). The theoretical approach undertaken in this analysis is described elsewhere (Pollock and Taket 2014), as is a more detailed description of the initiative. Four mechanisms were found effective in fostering social inclusion in the NGO setting: • Fostering authentic voice – being able to describe one’s experience in one’s own words and having these interpretations valued and validated by professional participants was instrumental in shifting from oppressive to inclusive relations. • Creating inclusive dialogue – ensuring the flow of control over meaning is multidirectional as all groups of participants work together to understand the shared situation in new ways. No longer is the dialogue and dialogic form dominated by one way or knowing and speaking, but becomes a process of negotiation, learning, and reimagining. • Critical facilitation and reflection – combination of separate/together spaces for dialogue, facilitated by someone who was from outside of the service setting but inside the organization was important for creating the necessary safety for authentic critical reflection. • Valuing alternate ways of knowing – ensuring the inclusion of all participants’ authentic voices and treating these as equally important. Service user accounts were able to highlight aspects of service delivery that they experienced as being unhelpful and were consequently inefficient, unsafe, or both. Staff accounts made visible their emotional and personal experience of service delivery, generally silenced in mainstream conversations about service development despite the centrality (continued)

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of service users’ emotional and personal experiences in dominant discursive formations on social care service delivery. Source: Summarized from Pollock (2020, pp. 1–11), Pollock and Taket (2014, pp. 157–169). The work is described in full in Pollock (2016).

Case Study 6 Working with Children with Disabilities

Between 2013 and 2015 Jenkin et al. (2017, 2020) worked in Vanuatu and Papua New Guinea (PNG), with Save the Children Vanuatu, PNG, and Australia and the Disabled Persons Organization in each country, to answer the question “What are the human rights needs and priorities of children with disability in Vanuatu and Papua New Guinea?.” They used an inclusive research design that focused on enabling the self-report of children with diverse disabilities. Data were collected from 89 children with disability (aged 5–18), across both countries. As well as the answer to the question posed in terms of reports for Vanuatu and PNG, the project also left a legacy in terms of a website containing a set of resources for supporting the involvement of children with disability in research, consultation, policy and service development, monitoring, and evaluation (see www.voicesofchildrenwithdisability.com). Jenkin et al. (2020) consider the important issue of how to embed the change produced in short-term funded projects at a variety of levels in order to ensure the social inclusion of the group continues beyond the life of the project. Source: Summarized from Jenkin et al. (2017, pp. 358–380; 2020, pp. 189– 202) The fullest description of the work is given in Jenkin (2019).

One strategy for ensuring rights-based approaches are used in individual interactions between health/social care professionals and patients/clients is through embedding such approaches into professional guidelines and codes of conduct and/or guidance for practice in particular settings. There is also considerable overlap with different codes of professional ethics. Nixon and Forman (2008) explore complementary features of human rights and public health ethics, finding that each has something to offer to the other, and that they can thus act synergistically. However, others have identified tensions between ethical and human rights standards. London (2008) discusses the experience in South Africa, arguing that unless the complementarities and differences in ethical and human rights standards, particularly acute in the problems of dual loyalty faced by clinicians, providers, and policymakers, are recognized, insufficient use of rights-based approaches will be made to impact the health of the most vulnerable in society. Case study 7 presents some examples of rights-based professional guidelines and guidance for practice. Curtice and Exworthy (2010) set out a mnemonic

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encapsulating what they see as the essence of RBAs: human rights can be protected in clinical and organizational practice by adherence to the underlying core values of fairness, respect, equality, dignity, and autonomy (FREDA). Their paper goes on to demonstrate that these principles are the basics of good clinical care as set out in professional standards, such as the third edition of Good Psychiatric Practice (Royal College of Psychiatrists 2009), relating this to examples of clinical practice in the context of the UK’s 1998 Human Rights Act and decisions of the European Court of Human Rights. Case Study 7 Examples of Rights-Based Professional Guidelines and Guidance for Practice

Public Health and Health Promotion • The “Principles of the Ethical Practice of Public Health” of the American Public Health Association (Public Health Leadership Society 2002) starts with a reference to the UDHR. Medical Professionals • Royal College of Psychiatrists (2009), UK • Asher et al. (2007), a publication on “the right to health” produced for the British Medical Association and Commonwealth Medical Trust, includes a section on RBA for professional practice Social Work • Ife (2008) considers rights-based practice • Centre for Human Rights (1994) provides a manual for schools of social work and the social work profession on human rights and social work

Strengths-based and person-centered approaches that embrace shared decisionmaking (Pepin et al. 2010; Coulter and Collins 2011) are represented strongly in practice within disciplines such as occupational therapy, disability services, and social work. Patient-centered care has strong links to improved quality of life and reduced morbidity (Bauman et al. 2003). These approaches are highly correlated with rights-based approaches, although this link is not always explicitly made, and where it is, the discussion is often in terms of “patient rights” without making explicit connections to “human rights.” See, for example, Groene (2011) and McClimans et al. (2011), for a discussion of the links to clinical ethics. Within the disability field, professional practice has developed over the last three decades in order to respond to the demands of practice free from discrimination, central to the achievement of social inclusion for people with disabilities. The

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development of the International Classification of Functioning, Disability, and Health or ICFDH (WHO 2001) has helped support this change. The ICFDH provides a common language for discussion of functioning, activity, and participation in relation to a diverse spectrum of health conditions and can be applied to any individual. It thus avoids the need for labeling an individual as disabled or nondisabled, and also recognizes the importance of environment and social context in supporting or hindering an individual’s participation in different activities.

6

Conclusion and Future Directions

This chapter has explored the importance of rights-based approaches in research into health and social care as well as in diverse practices in these fields. Social inclusion and associated rights to participation in policy formulation and implementation, service development and delivery, as well as different dimensions of research and practice in health and social care are assisted by the use of right-based approaches. The case studies in this chapter present a wide range of different applications of RBAs in different contexts, for different services, and with different population groups. They illustrate the considerable potential of RBAs. Constraints of length have limited the level of detailed discussion that has been possible. For those interested in following up on human rights and the value of rights-based approaches to health and social care professionals, a more extended treatment is available in McKay and Taket (2020), while many further examples of RBAs supporting social inclusion in research and practice can be found in Taket et al. (2009, 2014) and Crisp and Taket (2020). Over 2020, the first full year of the current COVID19 pandemic, income inequalities increased throughout the globe. As Soutphommasane (2021, p. 24) summarizes: “the rich and wealthy . . . are having a good pandemic.” The twin global challenges of climate emergency and pandemics have been shown thus far to increase health inequities and compromise inclusion (Watts et al. 2021). This makes it essential that RBAs are increasingly utilized in the future to support inclusion, to facilitate the empowerment of the most disadvantaged, and in the words of the SDGs, leave no one behind.

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Stigma, Discrimination, and Social Exclusion Pranee Liamputtong and Zoe Sanipreeya Rice

Contents 1 2 3 4 5 6

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stigma and Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stigma, Discrimination, Health, and Well Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stigma, Discrimination, and Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stigma, Discrimination, and HIV/AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Managing Stigma and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Destigmatization of Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 The Undetectable Untransmissable (U U) Slogan/Campaign . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Stigma is an important part of the social determinants of health that performs a crucial aspect in the distribution of health status and life chances for many individuals through the manufacturing of inequalities and inequities. The consequence of stigma is that the stigmatized are systematically excluded from life chances and opportunities such as education, housing, employment, and health and social care. Clearly, stigma is inextricably linked with social exclusion. Stigma is used by people to interpret specific traits of others as “unworthy” and thus “discreditable”; and this results in the stigmatized person becoming “tainted” or “discounted.” Individually, the effects of stigma and social exclusion can be profound and destructive. They can result in isolation, low self-esteem, depression, self-harm, poor academic achievement and social relationships, P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] Z. S. Rice Camberwell, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_6

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poor physical and mental health, and suicide. The best strategy to fight against social stigma is social inclusion. It is hoped that we will see more reduction of stigma which will result in the improvement of the social inclusion of many people in the world. This will lead to better health and well-being for all people, reduction of inequalities through devoid of discrimination, vulnerability, and marginalization, and more equitable health at the global level. This chapter will bring readers through several important issues relevant to deviance, difference, and stigma. The chapter will first introduce the concepts of stigma and discrimination. It then discusses the impact of stigma and discrimination on the health and well-being of those who are stigmatized. It also outlines the impact of stigma and discrimination on those who experience mental health and those living with HIV/AIDS. Lastly, the chapter discusses strategies to combat stigma in society. Keywords

Stigma · Discrimination · Deviance · Differences · Labeling theory · Social exclusion · Mental illness · HIV/AIDS · Destigmatization

1

Introduction Stigmatization is a complex process of social control in which labeling, stereotyping and negative attitudes towards a person, based on a condition or behavior often lead to status loss, rejection or discrimination (Rivera Segarra et al. 2019, p. 2).

Stigma is an important part of social determinants of health that performs a crucial aspect in the distribution of health status and life chances for many individuals through the manufacturing of inequalities and inequities (Link and Hatzenbuehler 2016). The consequence of stigma is that the stigmatized are systematically excluded from life chances and opportunities such as education, housing, employment, and health and social care (Link and Phelan 2001; Phelan et al. 2008; Felner et al. 2018). Clearly, stigma is inextricably linked with social exclusion. The word stigma is derived from Ancient Greece, meaning “mark.” Marks were impressed on slaves as a way to identify their position in the social structure and which suggested that they were of lesser value or to be socially excluded (Goffman 1963; Link and Stuart 2016). Stigma creates “difference” and sanctions and sustains social inequalities in society (Mumin et al. 2018). It is an underlying origin of health inequalities because it adds to “the unequal distribution of resources and power through multiple pathways” (Clair et al. 2016, p. 223). Often, the stigma will result in discrimination against individuals who are stigmatized. Although stigma are socially constructed concepts, they have a negative impact on the life and wellbeing of individuals and groups who are so labeled (Link and Stuart 2016). As such, stigma and discrimination form an important component of the social exclusion of people in society (Berry and Greenwood 2018). Stigma can occur at different levels: the individual, interpersonal, and/or structural level (Cook et al. 2014). There are interconnections between individuals, society, and greater societal structures that influence each other within and between

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levels. Additionally, there appears to be an intersecting stigma that occurs when individuals are “marked” with multiple stigmas. For instance, when an individual who belongs to an ethnic minority group, have low socioeconomic status, is a member of LGBTI community, and is living with mental illness, he or she will carry multiple stigmas basing on his or her ethnicity, social, gender, and health statuses (Stangl et al. 2019). Stigma is a universal phenomenon, with similar features across cultures (Brakel et al. 2019; Stangl et al. 2019). However, how they manifest and are experienced are locally specific and influenced by the cultural context within individuals reside (Yang et al. 2007; Koschorke et al. 2017; Rivera-Segarra et al. 2019). This chapter will bring readers through several important issues relevant to deviance, difference, and stigma. The chapter will first introduce the concepts of stigma and discrimination. It then discusses the impact of stigma and discrimination on the health and well-being of those who are stigmatized. It also outlines the impact of stigma and discrimination on those who experience mental health and those living with HIV/AIDS. Lastly, the chapter discusses strategies to combat stigma in society.

2

Stigma and Discrimination

In his classic work, Irving Goffman (1963, p. 3) theorizes that stigma is a “devaluation” process that links with stereotyping and prejudice. It is used by individuals to interpret specific traits of others as “unworthy” and thus “discreditable”; and this results in the person stigmatized becoming “tainted” or “discounted” (Thomas 2006, p. 3175). Those who are stigmatized, or “marked” will then be “disqualified from full social acceptance” (Goffman (1963, preface). Following Goffman’s theory of stigma as an attribute, the term “mark” was coined to mean stigma which would eventually lead to the definition of the person as being “flawed” or “spoiled” (Yang et al. 2007, p. 1525). Based on a social position that dictates that some individuals are “tainted” and “less than,” stigma is a mark that separates people from one another (Goode 2016; Major et al. 2018). The foundation of stigma lies in “deviance” and “differences.” These deviances and differences can be in physical appearance, gender, sexuality, personality, age, illness, disability, and specific behavior which evoke discontent, abhorrence, panic, or sympathy from others (Goode 2016). According to Link and Phelan (2001), the main element of the stigmatizing strategies is to create the “us and them” principle; what Powell and Menendian (2016) refer to as the “Othering” concept. Its aim is to lay a foundation that could separate individuals who are perceived as “good and in favour” from those who are “bad and out of favour” within a given social norm. Once this principle is initiated, stigmatization and social exclusion are permitted. This process is then established and confirmed by the prejudiced position which accentuates the difference; that is the “us and them” or “Self and Other” (Udah and Singh 2019). Often, this leads to discrimination against the discrediting persons (Krupchanka and Thornicroft 2016; Malik and Dixit 2017; Mumin et al. 2018; Udah and Singh 2019).

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Stigma is “a multidimensional construct” (Link and Phelan 2001). Goffman (1963) suggests that there are three kinds of stigmatizing conditions. The first is “tribal identities” which include such identities as gender, race, religion, and nationality. Second is the “blemishes of individual character” and these may include having a mental illness, having a history of addiction or incarceration, and living with HIV/AIDS. Third is “abominations of the body” which include such bodily conditions as deformities and physical disabilities (LeBel 2008; Mumin et al. 2018). Basing on Goffman’s stigmatizing conditions, many individuals would be stigmatized due to their social and health statuses in many societies. However, Falk (2001) proposes two types of stigmatizing states which are based on the “cause” of stigma. First, “existential stigma” occurs when an individual does not create stigma or has very little control over it. These include being old, his/her race and ethnicity, and having mental illness. Second, “achieved stigma” which happens when an individual has acquired a stigma due to his/her action and behavior and/or because he/she has personally cultivated it. These may include such actions as becoming a refugee, immigrant, prisoner, or homeless, and living with HIV/AIDS (LeBel 2008). Stigma theorists have focused more on the position of social norms in the process of constructing stigma (Stuber et al. 2008). Goffman (1963), for instance, contends that because deviations from social rules are inescapable, stigmatization is a common characteristic of any society. Stigmatization is a characteristic of all sociocultural groups. It is employed to elicit conformity with the social standings of society so that law and order can be enforced. Based on this perspective, stigmatization is the result of deviating from social rules which attempt to make the deviant individual conform (Goffman 1963; Mumin et al. 2018). It is also used to illustrate to other group members the behaviors which are not condoned, and the effects that will be felt by those who engage in such actions. However, it can only be used in these ways to enforce conformity around voluntary behaviors, for example, illicit drug consumption and cigarette smoking (Stuber et al. 2008). Stigma has also now been defined by scholars in terms of a person’s social identity, and the essence of unique social contexts has been more emphasized. The central feature of social stigma suggests that stigmatized persons have, or are believed to have, some characteristics which are associated with a disvalued social identity in a particular social situation (Major et al. 2018). Stigma is a process which is grounded within the “construction of social identity” (Yang et al. 2007, p. 1527). Stigma eventuates through what Goffman (1963, p. 32) refers to as a “moral career.” It is a process when a stigmatized individual initially makes sense of his or her social position in society and later acquires a set idea of what it would be like to have a specific stigma. The person will then pass from a “normal” to “discreditable” status. And through social interaction, he or she will eventually obtain a “discredited” status and “damaged identity” (Curra 2014; Finzen 2017). In Goffman’s term, when an individual’s new identity is “assumed through interaction (i.e., “re-identifying”) with socially constructed categories,” the stigma will occur (Yang et al. 2007, p. 1527). A good example is the case of mental illness. A person with mental illness (a non-visible stigma) passes

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from “normal” status to “discredible” one. His or her “discredited” status is gained when he/she discloses the mental illness condition to others. Stigma also occurs through the process of “labeling” (Curra 2014; Goode 2016). People are stigmatized when they are “labelled, set apart, and linked to undesirable characteristics” which result in the loss of their status and discrimination (Link and Phelan 2001, p. 369; Huebner et al. 2019, p. 716). For example, when an individual living with mental illness is given a deviant label, it will eventually lead the person to change his or her self perception and social opportunity (Yang et al. 2007; Link and Stuart 2016). Individuals learn about the stereotypes of mental illness through the process of socialization and daily reinforcement. Due to its highly discrediting status, once the stereotype is fully formed, the person’s “patient” role will emanate as a “master status” (Markowitz 2005). Consistent reactions from others, particularly the application of social exclusion, will prevent the person from reclaiming his or her former (“normal”) social functions (Yang et al. 2007; Goode 2016; Link and Stuart 2016). Similarly, individuals with criminal history experience stigma and discrimination in the community and when seeking employment, housing, and social services when “the ‘felon’ label becomes their master status” (Huebner et al. 2019, p. 716).

3

Stigma, Discrimination, Health, and Well-Being

Health and illness conditions which tend to produce stigma are those which are connected with negative characteristics, have uncertain or unknown causes and limited treatment, and produce intense reactions such as fear and disgust (LeBel 2008). Historically, leprosy and tuberculosis were met with revulsion and later on one witnessed the same emotional responses toward cancer, mental illness, HIV/AIDS, and, more recently, obesity and overweight (LeBel 2008; Liamputtong 2013a, b; Malik and Dixit 2017; Gaebel et al. 2017; Pont et al. 2017). Currently, one still see numerous health-related issues that have attracted stigma, for example, abortion, infertility, being overweight, obesity, bottle-feeding practices, and cigarette smoking. Those who belong to stigmatized, such as poor people, homeless people, gay, lesbians, and transgender individuals, refugees, indigenous people, and ethnic minority groups, are also likely to have to deal with the negative repercussions of stigma-related social and health issues (Ritterbusch et al. 2018; Liamputtong and Kitisriworapan 2019). The effect of stigma on the stigmatized individuals can differ in its magnitude and manifestation (Link and Phelan 2001; Link and Stuart 2016; Major et al. 2018). Often, stigma generates negative credibilities; these are termed stereotypes. It then gives legitimacy to the negative credibilities; this is referred to as prejudice. This prejudice then leads to a wish to shun individuals who possess stigmatized statuses. This is called discrimination (Link and Phelan 2001; Krupchanka and Thornicroft 2016; Major et al. 2018). Any form of discrimination and prejudice may lead to social exclusion as it functions to disconnect stigmatized persons from society and prohibits them from societal benefits, such as access to services

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like education, housing, social support, and health care (LeBel 2008; Krupchanka and Thornicroft 2016; Major et al. 2018). Individually, the effects of stigma and social exclusion can be profound and destructive. They can result in isolation, low self-esteem, depression, self-harm, poor academic achievement and social relationships, poor physical and mental health, and suicide (Yang et al. 2007; Krupchanka and Thornicroft 2016; Ferlatte et al. 2017; Major et al. 2018). For stigmatized individuals with major health problems, stigma can also “intensify the sense that life is uncertain, dangerous, and hazardous” (Yang et al. 2007, p. 1528). Therefore, it is clear that stigma and discrimination have a negative impact on the quality of life of stimatized persons (Major et al. 2018). Discrimination has dire consequences for the stigmatized person who is in a vulnerable position because of a power differential due to his/her cultural alliances (such as marginalized ethnic groups), socioeconomic status (e.g., living with poverty and have little social capital), sexual identity (such as members of LGBIQ groups), or experiencing stigmatized health issuses (such as mental illness, leprosy, obesity, and HIV/AIDS) (Paul 2018). The impact of stigma on the health and well-being of the stigmatized individuals and groups is huge (Pausé 2017; Major et al. 2018). The fact that stigma has a damaging effect on individuals’ health has led public health officials and advocates to notice the powerfully negative results of stigmatization for public health. In the area of HIV/AIDS, for example, it is now clear that the stigmatization of certain groups such as commercial sex workers, injecting drug users and gay men would only make them more susceptible to HIV infection and push them out of reach of those who attempt to help them to modify the behaviors that put them and others at risk (Stuber et al. 2008; Ferlatte et al. 2017). Being labeled can also have intrinsic ramifications if the negative experiences are internalized, which can lead to lower self-esteem, self-efficacy, and self-blame (Link and Phelan 2001; Watermeyer and Swartz 2016). Weight stigmatization and discrimination are the social results of obesity. Stigma relating to a weight that embodies negative stereotypes about people with “non-normative bodies” has been perceived as a “truly globalized” and “emotionally damaging” reality of many obese people (Monaghan 2017, p. 182). Weight stigma can be seen as the societal devaluation of an individual because he/she has obesity or overweight. Often, this results in stereotypes that persons with obesity are “lazy, unmotivated, or lacking in willpower and discipline.” These stereotypes exhibit in many ways such as teasing, bullying, and weight-based victimization leading to social rejection, discrimination, and unfair treatment. Experiences of weight stigma impact the quality of life of individuals, particularly young people (Pont et al. 2017; Monaghan 2017; Flint 2019). Stigma can also be a key driver of social exclusion for stigmatized persons. Common stereotypes of homeless individuals as disorganized, lazy, unemployable, drug users, mentally ill, and likely to be dangerous, are a critical feature of “othering” leading to social exclusion. Clearly, the division of “us” and “them” adds to social distancing and exclusion (Bullock and Garland 2017) (Fig. 1).

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•

Stigma Marking

•

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Health condition related stigma Gender, race, ethnicity, social class, sexual orientation, occupation-related stigma

Stigma experiences [experienced stigma and discrimination, internalized, perceived stigma] • Stigma practices (stereotypes, prejudice, discriminatory attitudes) •

Manifestations

•

Outcomes

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Affected populations (access to health and social care) Organizations and institutions (rights to health, soical protection)

Health and Social Impacts (Social exclusion)

Fig. 1 Stigma and discrimination model. (Adapted from Stangl et al. 2019, p. 3)

4

Stigma, Discrimination, and Mental Illness

Individuals experiencing mental illness are particularly vulnerable to stigma, discrimination leading to social exclusion. Stigma and discrimination resulting in social exclusion have immense impacts on individuals with mental illness. Stigma and discrimination can lead to poor self-esteem, and disrupt help-seeking attempts and access to health care of people with mental illness. This results in the constraint of their recovery (Hall et al. 2019). Stigma often portrays individuals with mental illness as “dangerous, unpredictable and unintelligent.” These beliefs are produced through “discriminatory and exclusionary behaviour” (Hall et al. 2019, p. 2). In all covers of the world, people living with mental illness are ostracized, blocked from employment, and denied sexual, reproductive, and legal rights to vote (Hall et al. 2019). Although stigma toward mental illnesses is a worldwide phenomenon, the manifestation and implication of stigma are often “culturally specific” (Koschorke et al.

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2017; Krupchanka et al. 2018). For instance, stigma is a powerful element in Asian cultures. Not only it reflects badly upon the mentally ill, but it also reduces the marriage value for a person as well as the value of his/her family (Tran 2018). Among Asians, religion has a strong connection with mental illness. Wynaden et al. (2005), in their research with Asian Americans, point out that Buddhism and Taoism have a great influence on the health beliefs of community members. Buddhists believe in reincarnation and the philosophy of karma. Karma, the law of cause and consequence, emphasizes that there is a consequence for every action. Positive/good actions result in positive/good reactions and negative actions/bad results in negative/bad reactions in the present life and a later reincarnation. For parents who have a child with a mental illness would be seen as being punished for their bad deeds in their past lives. Other beliefs about the cause of mental illness are that the person is possessed by the evil spirit (Wynaden et al. 2005, p. 91). Tran (2018) found that traditional beliefs of mental illness among Asians are also linked to the concept of bad blood and this bad blood is transmitted through the mother, not the father: “. . . it was some bad blood in your family that caused it [mental illness]. Sometimes if the child has this problem [mental illness] then it must be the mother’s fault, not the father. The mother brought all this to the family” (p. 83). Mental illness is “a silent epidemic” in most parts of Africa (Kimotho 2018, p. 21). In their recent study in Botswana, Becker and colleagues (2019, p. 1574) suggest that mental illness was commonly referred to as “bahaphegile,” suggesting deviance and difference which results in discrimination. Local people see mental illness as chronic and incurable. It is portrayed locally as happening “when the trees blossom.” Predominantly, local people believe that mental illness is caused by witchcraft; one can befall victim of witchcraft by social transgression or jealousy of other’s social success. People with mental illness, particularly schizophrenia, are widely stereotyped as dangerous, unpredictability, cognitively impaired, and not trustworthy (Zäske et al. 2019). These cultural beliefs and stereotypes perpetuate stigma and discrimination among people experiencing mental illness (Koschorke et al. 2017; Kimotho 2018; see also Goffman 1963; Link and Stuart 2016; Gaebel et al. 2017; Zäske et al. 2019). Any form of discrimination and prejudice may lead to social exclusion as it functions to disconnect stigmatized persons from society and prohibits them from societal benefits, such as access to services like education, housing, social support, and health care (Yang et al. 2007; Gaebel et al. 2017; Krupchanka and Thornicroft 2016; Major et al. 2018; Zäske et al. 2019). Individually, the effects of stigma and social exclusion can be destructive. They can result in isolation, low self-esteem, depression, self-harm, poor academic achievement and social relationships, poor physical and mental health, and suicide (Ferlatte et al. 2017; Gaebel et al. 2017; Link and Stuart 2016; Krupchanka and Thornicroft 2016; Major et al. 2018; Liamputtong and Kitisriworapan 2019; Ngubane et al. 2019). Importantly, cultural stigma toward mental illness has resulted in the underutilization of mental health care in many groups (Kimotho 2018; Ngubane et al. 2019). Individuals living with mental illnesses may feel shame, stigmatized, and hide their problems for fear of being labeled. Some may prolong or never seek help (Tran 2018; Ngubane et al. 2019; Zäske et al. 2019).

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Stigma, Discrimination, and HIV/AIDS

From the onset of the epidemic, HIV/AIDS has been seen not only as a medical condition but also as a stigmatized state (Letteney and LaPorte 2004). HIV/AIDS was first recognized in 1981 and since then it has provoked forceful reactions from others (Scambler 2003). HIV/AIDS uniquely combined “sex, drugs, death, and contagion” (Scambler 2003, p. 199). This unique combination made HIV/AIDS a powerfully stigmatizing disease. It is also prevalent among those who are already members of stigmatized groups, initially gay men, and later injecting drug users (Parker and Aggleton 2003). Globally, in countries where HIV/AIDS is predominantly heterosexually transmitted, stigmatization and discrimination are also pervasive. Those who are from marginalized groups such as poor people, women, mothers, sex workers and injecting drug users heavily bear the brunt of the impact of HIV/AIDS (Liamputtong 2013a, b; Ferlatte et al. 2017; Malik and Dixit 2017; Le et al. 2018). Some have suggested that the stigmatization and discrimination of these people have violated the human rights of human beings. Despite the fact that society now has a better understanding of the causes and impacts of HIV/AIDS, the burden of prejudice continues to exist (Liamputtong et al. 2009; Vlassoff and Ali 2011; Liamputtong 2013a, b). Research continues to reveal the ways in which society neglects the need for health care for those living with HIV/AIDS (Deng et al. 2007; Anderson et al. 2010). Stigma may be manifested in actions such as gossip, verbal abuse, and distancing from individuals living with HIV/AIDS. It ranges from subtle actions to “extreme degradation, rejection, and abandonment” (Thomas 2006, p. 3175). Often, ignorance, a lack of accurate information about HIV and AIDS, and misunderstanding about HIV transmission are the common sources of HIV/AIDS stigma (Zhou 2007; Vlassoff and Ali 2011). HIV/AIDS has particular traits that initiate a high level of stigma (Parker and Aggleton 2003). As stigma is socially constructed and is attributable to cultural, social, historical, and situational factors, stigmatized individuals are subject to “feelings of shame and guilt.” As discussed earlier, a major consequence of stigmatization is discrimination and it occurs when an individual “is treated unfairly and unjustly” due to the perception that the individual is deviant from others (Deng et al. 2007, p. 1561). As such, the HIV/AIDS stigma is perceived as “an individual’s deviance from socially accepted standards of normality” and these can include such deviance as “immorality,” “promiscuity,” “perversion,” “contagiousness,’ and “death.” Hence, people living with HIV/AIDS (PLWHA) are socially constructed as the “other” who is “disgracefully different from and threatening to the general public” (Zhou 2007, p. 2856). Often, individuals living with HIV experience “intersectional stigmas”; the convergence of multiple stigmatized identities resulting from intersecting prejudices that are linked to affiliations (gender, ethnic identity, or sexual orientation) or societal views about particular behaviors or characters (poverty, sex work, incarceration, or substance use) (Andersson et al. 2019; Turan et al. 2019). Stigma is multi-dimensional. There are three broad types of HIV/AIDS-related stigma. First is self-stigma which occurs through “self-blame and self-deprecation” of those living with HIV/AIDS. Second is perceived stigma which is related to the fear of

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individuals, that if they disclose their HIV positive status, they may be stigmatized. Third is enacted stigma, which occurs when individuals are actually discriminated against because of their HIV status – actual or perceived (Thomas 2006, p. 3175).

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Managing Stigma and Social Inclusion

The best strategy to fight against social stigma is social inclusion. There have been several means that attempt to reduce stigma around the globe. In this section, some salient means that can promote social inclusion and reducing social stigma are discussed. At a societal level, there is a need for more organized and structural attempts that include both policy and legal action to entirely reshape public perceptions and reactions toward stigmatized people (LeBel 2008). The results of these attempts may produce a long-term effect on anti-stigma efforts. It has been suggested that through contact with the stigmatized persons and educational campaigns, the stigmatizing attitudes of the public could be improved. It has been shown that when the general public has a direct interaction with individuals from stigmatized groups, the attitudes of the public toward the stigmatized have improved (Brown et al. 2003). This is what Clair et al. (2016) refer to as the “destigmatization” strategy. Similarly, involving stigmatized individuals as speakers in educational sessions to educate the general public is effective in promoting positive perceptions and responses of the target audiences as these individuals can provide more accurate information and debunk many misconceptions about them (see Corrigan et al. 2002; Couture and Penn 2003; Clair et al. 2016). Additionally, protest and advocacy can work effectively as a strategy to reduce stigma (LeBel 2008). Collective tactics such as “social activism” have proved to be valuable (see Gaebel et al. 2017; Rodier 2017; Daftary et al. 2018). Thus far, these collective responses have been witnessed from several stigmatized groups including gays/lesbians/transgender persons, individuals with physical disabilities, people living with mental illness, and other stigmatized groups, which have been successful in changing official policies and laws. It is argued that this strategy is the most powerful and long-lasting means for the reduction and eradication of prejudice and discrimination for many stigmatized groups. The motive and ability to resist or deny the label of deviance among stigmatized groups is an interesting aspect of stigma-related reduction and eradication. In Foucault’s term (1981), these people would employ “reverse discourse” as a way to resist the label of deviance and hence avoid being stigmatized. This discourse allows individuals and groups to “present a positive affirmation of their identity and perspectives rather than a deviance designation” (Roach Anleu 2006, p. 422). Collectively, the stigmatized groups can generate a strategy that can be used to reject the standard social values and norms (Liamputtong et al. 2009; Major et al. 2018). In the HIV/AIDS area, there have been many strategies that individuals and groups have used to combat and abolish stigma. Gay men have adopted such symbols as the pink triangle, which is a symbol that the Nazis used in the Holocaust to mark out homosexuals before slaughtering them, to counteract their

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stigmatization. Two UK voluntary organizations, “Gay Men Fighting AIDS” and “ACT UP” (AIDS Coalition to Unleash Power) are good examples of political activation which make use of power as a response to combat stigma.

6.1

Destigmatization of Stigma

Destigmatization is the process by which the cultural constructions of stigmatized individuals/groups are changed which will lead to the improvement of the worth and status of these people. It has significant ramifications for their health and well-being (Clair et al. 2016). According to Clair et al. (2016, p. 229), the change of cultural constructions of individuals/groups may help to decrease societal-level stigma in the long run. This is referred to as the “social process of destigmatization.” The cultural constructions of stigmatized groups involve the redefinition of the stigmatized group. This results in the improvement of attitudes and beliefs among the stigmatizers. This change allows more positive interactions between stigmatized and non-stigmatized groups, and, in turn, reduce devaluation and discrimination. It is the process that constructs the stigmatized individuals as blameless, and who are “just like us” instead of the “us” and “them” position. This process can occur both in informal interaction and in institutions that regulate opportunities and resources such as medical settings where stigma can link to differential health care (Clair et al. 2016). Clair et al. (2016) propose a sociological framework that can be used to understand how new cultural constructions that draw equivalences and remove blame shape public and structural stigma over time. This framework can be applied to any other stigmatized areas and groups. They posit that there are three social conditions linked with the reduction of public and structural stigma (Fig. 2):

Fig. 2 Destigmatizing process (adopted from Clair et al. 2016, p. 230)

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Fig. 3 The U U slogan

First, the public must come to see new cultural constructions as credible. The credibility of constructions often relies on the degree to which expert knowledge supporting such construc tions is perceived to be conclusive. Increasingly conclusive medical knowledge demystified stereotypes about PLHAs, especially that only gays get AIDS. . . The credibility of destigmatizing constructions is affected by the status and visibility of social actors who disseminate them. . . Second, even when new constructions are credible, their destigmatizing potential depends on their interaction with preexisting understandings and ideologies. . . Third, destigmatization is more likely when non stigmatized individuals find their own fate linked to the stigmatized group. When AIDS became understood as viral, not bound to a ‘homosexual lifestyle’, the general public could see HIV/AIDS as relevant to their own lives (pp. 228 229).

6.2

The Undetectable5Untransmissable (U5U) Slogan/Campaign

There has been an interesting campaign to reduce the stigma of individuals living with HIV that deserves great attention. In early 2016, the Undetectable¼Untransmissable (U¼U) slogan was launched by the Prevention Access Campaign to promote the finding which has scientifically revealed that individuals who are infected with HIV but virally suppressed cannot sexually transmit the virus to others. Since the launch, the campaign has rapidly captured strength and has been recommended by more than 400 organizations from 60 different nations. U¼U is a simple but immensely crucial campaign that is based on a solid foundation of scientific evidence. It helps people to base their knowledge on science, not stigma. In the Editorial of the Lancet (2017), it states that the campaign is successful in influencing public opinion, allowing more people with HIV as well as their families and friends to realize that they “can live long, healthy lives, have children, and never have to worry about passing on their infection to others.” The campaign helps to “promote the undeniable benefits of treatment, which will encourage more and more people with HIV to seek treatment, bringing the HIV community one step closer to the achievement of the UNAIDS’ 90-90-90 target by 2020 and to complete elimination of the entirely unfair and outdated stigma still faced by many people living with HIV today” (p. e475) (Fig. 3).

7

Conclusion and Future Directions To decreasing stigma and promoting social inclusion in its place. It will require a devoted, concentrated effort, but we know from past successes that by working together we can achieve a great thing. (Carter et al. 2013, p. 773)

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Since the publication of sociologist Erving Goffman’s seminal work on stigma in 1963, one has witnessed the expansion of research on stigma across many disciplines such as social science, public health, and medicine. There has been a more in-depth understanding about how stigma functions and resulting harm in the context of different identities and diseases (Stangl et al. 2019). Stigma is based on the idea that some individuals are different and this often leads to discrimination. Although stigma is socially constructed, it can impact on the lives of many individuals and groups, particularly those who are already vulnerable to ill health such as individuals with mental health concerns or living with HIV/AIDS. In order to eradicate stigma, Scambler (2003) contends that there should no longer be any sanction to “mark” some individuals as deviant and stigmatized and then treat them as “outsiders.” Instead of treating difference as a basis for discrimination and rejection, it should be credited as “a source of celebration.” The authors entirely agree with this position. This is reflected in the destigmatization of realities that are discussed in this chapter. As primary deliverers of health care, health care professionals are in the best position to embark on local and global discourse which can influence the creation of new policies and practices that would make the experiences of stigmatized individuals and groups more positive. This will inevitably enhance their health and well-being and make the lives of many marginalized and vulnerable people in the globe better in many ways. In the near future, it is hoped to see more reduction of stigma which will result in the improvement of the social inclusion of many people in the world. This will lead to better health and well-being for all people, reduction of inequalities through devoid of discrimination, vulnerability, and marginalization, and more equitable health at the global level (UNAIDS 2019; Andersson et al. 2019).

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Phelan, J. C., Link, B. G., & Dovidio, J. F. (2008). Stigma and prejudice: One animal or two? Social Science & Medicine, 67(3), 358 367. Pont, S. J., Puhl, R., Cook, S. R., & Slusser, W. (2017). Stigma experienced by children and adolescents with obesity. Pediatrics, 140(6), e20173034. Powell, J., & Menendian, S. (2016). The problem of othering: Towards inclusiveness and belonging. Othering & Belonging, 1, 14 39. Ritterbusch, A. E., Salazar, C. C., & Correa, A. (2018). Stigmarelated access barriers and violence against trans women in the Colombian healthcare system. Global Public Health, 13(12), 1831 1845. Rivera Segarra, E., Varas Díaz, N., & Santos Figueroa, A. (2019). “That’s all fake”: Health professionals stigma and physical healthcare of people living with serious mental illness. PLoS One, 14(12), e0226401. https://doi.org/10.1371/journal.pone.0226401. Roach Anleu, S. L. (2006). Deviance, conformity and control (4th ed.). Sydney: Pearson Education Australia. Rodier, D. (2017). The legacy of the HIV/AIDS fight in Canada. Retrieved 23 Mar 2018 from http:// policyoptions.irpp.org/magazines/january 2017/the legacy of the hivaids fight in canada/ Scambler, G. (2003). Deviance, sick role and stigma. In G. Scambler (Ed.), Sociology as applied to medicine (pp. 192 202). Edinburgh: Saunders. Stangl, A. L., Earnshaw, V. A., Logie, C. H., van Brake, W., Simbayi, L. C., Barré, I., & Dovidio, J. F. (2019). The health stigma and discrimination framework: A global, crosscutting framework to inform research, intervention development, and policy on health related stigmas. BMC Medicine, 17, 31. https://doi.org/10.1186/s12916 019 1271 3. Stuber, J., Galea, S., & Link, B. G. (2008). Smoking and the emergence of a stigmatized social status. Social Science and Medicine, 67, 420 430. Thomas, F. (2006). Stigma, fatigue and social breakdown: Exploring the impacts of HIV/AIDS on patient and carer well being in the Caprivi Region, Namibia. Social Science and Medicine, 63(12), 3174 3187. Tran, B. (2018). Understanding and addressing the stigma in mental health within the Asian and Asian American culture. In B. A. Canfield & H. A. Cunningham (Eds.), Deconstructing stigma in mental health (pp. 20 41). Hershey: IGI Global. Turan, J. M., Elafros, M. A., Logie, C. H., et al. (2019). Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine, 17, 7. Udah, H., & Singh, P. (2019). Identity, Othering and belonging: Toward an understanding of difference and the experiences of African immigrants to Australia. Social Identities, 25(6), 843 859. UNAIDS. (2019). The AIDS response in the 2030 agenda for sustainable development: Joint work, shared gains. Geneva: UNAIDS. Vlassoff, C., & Ali, F. (2011). HIV related stigma among South Asians in Toronto. Ethnicity & Health, 16(1), 25 42. Watermeyer, B., & Swartz, L. (2016). Disablism, identity, and self: Discrimination as a traumatic assault on subjectivity. Journal of Community and Applied Social Psychology, 26, 268 276. Wynaden, D., Chapman, R., Orb, A., McGowan, S., Zeeman, Z., & Yeak, S. H. (2005). Factors that influence Asian communities’ access to mental health care. International Journal of Mental Health Nursing, 14(2), 88 95. Yang, L. H., Kleinman, A., Link, B. G., Phelan, J. C., Lee, S., & Good, B. (2007). Culture and stigma: Adding moral experience to stigma theory. Social Science and Medicine, 64, 1524 1535. Zäske, H., Linden, M., Degner, D., Jockers Scherübl, M., Klingberg, S., Klosterkötter, J., Maier, W., Möller, H. J., Sauer, H., Schmitt, A., & Gaebel, W. (2019). Stigma experiences and perceived stigma in patients with firstepisode schizophrenia in the course of 1 year after their first in patient treatment. European Archives of Psychiatry and Clinical Neuroscience, 269, 459 468. Zhou, Y. R. (2007). ‘If you get AIDS. . . You have to endure it alone’: Understanding the social constructions of HIV/AIDS in China. Social Science and Medicine, 65(2), 284 295.

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Cultural Humility and Social Inclusion Vivian Cha´vez

Contents 1 2 3 4 5

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . What Is Cultural Humility? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Humility, Vulnerability, and Racism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cultural Humility Levels of Impact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Personal Attributes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Interpersonal Attributes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Organizational Attributes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conocimiento/Autobiography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Teaching and Learning Cultural Humility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Limitations of Cultural Humility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Cultural humility is a commitment to critical self-reflection, redressing power imbalances, and developing mutually respectful partnerships for a more inclusive society. As such, cultural humility is an embodied practice that addresses hierarchy, challenges organizational policies, and builds community capacity. This chapter starts with an open definition and a historical framework that serve as a reference point, or conceptual map, for the practice of cultural humility in promoting social inclusion among socially excluded people. Cultural humility levels of impact are explored with attributes at the personal, interpersonal, and organizational levels. The author shares a personal experience that informs her work teaching and learning cultural humility with multicultural multilingual college-aged students. The intention is to question conventional sites of V. Chávez (*) College of Health and Social Sciences, San Francisco State University, San Francisco, CA, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_7

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knowledge production and contribute with conocimiento, a form of autobiography used as a strategy to make transparent the dynamics of power and privilege that often reinforce mainstream, white/European, abled-bodied, cisgendered heteronormative standards. The chapter concludes with recommendations for teaching cultural humility, developing awareness, recognizing bias, and bringing interpersonal and organizational cultural humility for balanced action. Keywords

Cultural Humility · Conocimiento · Healing · Teaching · Public Health

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Introduction

Cultural humility lives at the intersection of social construct and personal story. The term was first described by Tervalon and Murray-Garcia (1998) as a lifelong commitment to self-evaluation and self-critique, redressing power imbalances, and developing and maintaining mutually respectful partnerships based on mutual trust. Cultural humility is a dynamic action-oriented practice focused on cultivating greater awareness of and sensitivity to one’s own worldview, and the cultural implications of one’s own identity group membership in relationship with others, while at the same time redressing organizational power. In this model, the most serious barrier to health equity and culturally appropriate care is the failure to develop self-awareness and institutional change. This chapter begins with an open-ended definition to invite readers to find and apply their own meaning for cultural humility as an embodied practice. Academic writing, multicultural references and autobiographic material is interwoven to facilitate an understanding of cultural humility form the inside out. Writing retroactively, the author selects past experiences, using hindsight to tell events and include interpretations to present cultural humility as a process to shift from cultural exclusion. Personal stories are relevant to cultural humility because they communicate transformation in fundamental ways, from deeply personal to organizational levels of community impact. Stories shape identity and communicate who one is and what is important in order to move others to act (Stroh 2015). Stories are the most common form of healing. A story told one way can harm, a story told another way can heal: Experiencing one’s own vulnerability allows for a deeper access into another person’s or culture’s world. By giving up or suspending one’s own world view, another, apparently conflicting worldview, which is sometimes perceived as dangerous, can be understood, even accepted. (Katz and Murphy Shigematsu 2012, p. 157)

Language is an essential component of cultural humility. Verbal and nonverbal communication skills counteract and enforce hierarchical dynamics that separate people from one another. The chapter explores multiple meanings found in two seemingly disparate words in social inclusion research and practice. Cultural humility levels of impact are presented with attributes at the personal, interpersonal, and organizational levels. Underlying themes of cultural humility are vulnerability,

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empowerment, and partnership. The chapter concludes with recommendations for teaching and learning in higher education and community contexts.

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What Is Cultural Humility?

Definitions are vital starting points for the imagination. What we cannot imagine cannot come into being. A good definition marks our starting point and lets us know where we want to end up. As we move toward our desired destination we chart the journey, creating a map. Being aware of the starting point is an act of social inclusion that promotes awareness and transparency. Cultural humility – two words, woven together evoke conflicting images and emotions. To be humble within a competitive fast-paced culture is to make oneself vulnerable and make mistakes. Cultural humility was coined by Tervalon and Murray-Garcia (1998) to describe a lifelong commitment to self-evaluation, redressing power imbalances, and developing and maintaining mutually respectful dynamic partnerships based on mutual trust. The practice started as a hospital-based effort to address health disparities and institutional inequities in medicine using an interdisciplinary cross-cutting framework at the personal, relational, and organizational levels of impact. The invitation of cultural humility is to incline the mind towards curiosity and respect for the mosaic of cultures served. A unique wall in a busy street of Beijing (see Fig. 1)

Fig. 1 Cultural humility invitation. (Photo by Vivian Chavez 2006)

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invites readers to step inside and proceed with caution. As you enter and come closer, there is a sign at the threshold that says NO VISITORS. Cultural humility is the invitation to not turn away or trespass. Respecting the boundaries that put the sign there in the first place, cultural humility reads the writing on the wall and is open to experiences of vulnerability and partnership as doorways to more effective social inclusion practice. The movement toward cultural humility implies social and personal transformation. What began as a framework for use in clinical practice to develop awareness, recognize bias, and address power imbalances at interpersonal and institutional levels has since been applied to public health (USDHHS 2009; Aragon et al. 2015), psychology (Hook et al. 2013; Gallardo 2014), social work (Ortega and Coulborn 2011), nursing (Faronda et al. 2016), community development (Ross 2010), community-based participatory research (Israel et al. 2008; Chávez 2017), and spiritual formation (Owen et al. 2014). Greene-Moton and Minkler (2019) propose revising the relationship between cultural competence and cultural humility, inviting the terms to enter into a synergistic relationship. The authors note that the polarizing terminology of “versus” may no longer be relevant and that it is time for a new paradigm. Greene-Moton and Minkler (2019, p. 144) describes her personal connection to cultural humility as a spiritual attribute and life time practice: I firmly believe that cultural humility/cultural competence is not an either/or but rather a both/and. I accept cultural humility to be the ability to maintain an interpersonal stance that is other oriented (or open to others) while accepting cultural competence as the ability to interact effectively with people of different cultures more of a learned/taught condition. I pride myself on being able to claim both competence and humility recognizing both as a lifelong journey, without an end point.

Faronda et al. (2016) provide a comprehensive concept analysis and current definition for cultural humility based on usage of the term in articles published between 2009–2014. The authors note that “cultural humility involves a change in overall perspective and way of life. Cultural humility is a way of being. Employing cultural humility means being aware of power imbalances and being humble in every interaction with every individual” (p. 214). Ross (2010) places cultural humility as a strand within cultural competence that goes beyond imparting knowledge about cultural practices to focus is on practitioners’ beliefs particularly identifying and examining one’s own patterns of unintentional and intentional racism. The Racial and Ethnic Disparities taskforce of Internal Medicine in Health Disparities (Smith et al. 2007, p. 318) underscore the need for teaching and learning cultural humility: Culturally humble skills include nonauthoritarian communication, cross cultural communi cation, an asset approach to research, cultural brokering, ability to engage in participatory decision making with community partners, and the ability to identify and analyze manifes tations of the unequal distribution of power in institutional practices and policies.

A focus on cultural humility helps professionals become flexible and humble enough to let go of the false sense of security that stereotyping and assumptions may bring (Tervalon and Murray-Garcia 1998; Juarez et al. 2006). Essential qualities of

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being a culturally humble practitioner involve the recognition of his or her privilege and awareness of biases to understand community mistrust borne out of historical and institutional practices. Academics can redress power imbalances in their research and foster trust within community partnerships in diverse settings. Through self-reflection, practitioners are encouraged to relinquish the role of expert and create partnerships to ultimately become students of the community (Wallerstein and Duran 2010).

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Culture

Simple actions such as defining terms exposes the part of ourselves that decides what is included and excluded based on what we know and who we are. This subjectivity is vital and must be acknowledged. In a sense, it is as important to define what something is, as much as it is what something is not. In his latest research on “Deep Diversity,” Shakil Choudhury (2015, p. 52) comments on the ranges of assumptions made about the culture of multicultural countries such as Canada and United States. He defines the complexity of subcultures within culture as not static, but continuously changing over time. Culture It is not only having a specific language, religion, racial/ethnic or national identity but regional differences, areas of work and age. Culture encomapsses all the learned patterns of behavior, thinking and being in the world that are passed down between generations. Culture includes values, morals, customs, foods, worldviews, priorities, beliefs, personal and professional boundaries. Much of culture exists as a silent code, an unspoken understanding with a group of people.

Our perceptions of culture are informed by the circumstances we are born into, grow up around, and are socialized by. The different and varied communities within which we walk are defied by culture (Yang 2017). Culture affects health, disease, and health care by encouraging certain health behaviors and discouraging others, by providing definitions for personal experience and prescribing idioms of distress and expectations (Airhihenbuwa 1995). It is not possible to predict the beliefs and behaviors of individuals based on their culture. The influence of Western biomedical models for health imposed and adapted globally as well as the traditional healing paradigms currently in practice all over the world are vast. Even within the same ethnic group and family, it is critical to avoid misleading reductionism. In a policy brief on “Cultural Contexts of Health and Wellbeing,” the World Health Organization regional office for Europe defines culture as “the set of distinctive spiritual, material, intellectual and emotional features of society or a social group encompassing art and literature, as well as lifestyles, ways of living together, value systems, traditions and beliefs. This definition stresses that culture is not limited to national, racial, ethnic, or religious affiliation – it is comprised of overt beliefs and practices as well as the subtle and often taken-for-granted conventions that frame our sense of reality, define what is normal and abnormal, and give our lives a sense of direction and purpose” (Napier 2017, p. 1). Anzaldúa (1999) gives a more nuanced definition of culture as an in-between space at the threshold between different spheres

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of existence. She introduces the border as a liminal culture zone where people live in a constant state of displacement, creative tension, and discomfort. Living between cultures and countercultures, Anzaldúa includes experiencing ethnic prejudice and homophobia in her definition of culture. Her writing emphasizes and questions borders. Cultural influence is there from the moment we are born until we pass away. A cultural lens gives meaning and a sense purpose. In a world with close to 80 million displaced people (UNHCR 2020) forcibly crossing borders culture matters.

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Humility, Vulnerability, and Racism Humility is not thinking less of yourself. Humility develops from thinking about yourself less

Rick Warren (2002, p. 97)

Cultural humility is a grounded practice that takes a stand of partnership and inclusion in the midst of hierarchical institutions. When public health physician Melanie Tervalon and health educator and clinic administrator Jane Murray-Garcia introduced the concept of cultural humility to the fields of medicine and public health 30 years ago, they initiated a valuable conversation about humility that resonates to this day. Social inclusion practice and research require humility to curb the drive towards claiming “all knowing” expertise. Humility, comes from the Latin word humus, the life-giving layer of soil that is supportive to life. It is modesty in behavior and vulnerability. Murphy-Shigematsu (2018, p. 52) points out that “feelings of vulnerability may be unsettling, but they are a way of understanding the importance of balancing a sense of competence with humility, remaining open to complexity despite our desire for simplicity.” While it may be countercultural to be humble in societies based on competition and ambition, recognizing attitudes of entitlement, and potential abuses of power is essential for social inclusion to occur. The concept of cultural humility is neither neutral nor ahistorical. The framework was developed in response to a legacy of anti-black racism, police brutality, and civil unrest. The relationship-based character of cultural humility offered racial healing through community dialogue. However, the civil unrest that occurred in Los Angeles in the early 1990s continues and is amplified beyond incidents of police violence against African Americans. Pastor and Blumenfield (2012) point to key demographic transitions causing ethnic, racial and intergenerational tensions and request hospitals, health departments, universities, institutional review boards, and other social policy entities to be inclusive of the communities they serve. Due to increasing diversity and inequality, the need for culturally humble practice is more critical than ever. Miguel Gallardo (2014) identifies the value of examining cultural identity and the spiritual aspects of cultural humility. He invites professionals to challenge the status quo and acknowledge unearned privilege to take meaningful action and learn how to become humble allies not only with the communities they serve but with their colleagues of color.

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Cultural Humility Levels of Impact

Levels of impact and organizational, interpersonal, and personal attributes of practice are discussed in this section (see Figs. 2 and 3).

Fig. 2 Cultural humility levels of impact

Organizational Institutional -power to Interpersonal Partnershippower with

Personal Individual -power within

Fig. 3 Organizational, interpersonal, & personal attributes

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5.1

Personal Attributes

Continuous self-study and awareness about what each person brings to an interaction is essential to cultural humility practice. Critical self-reflection is a skill beyond contemplation and private rituals. It involves an awareness of diversity through an examination and exploration of a person’s cultural inventory. In the essay, “Challenging Ourselves with Critical Self-Reflection,” Hyde (2012) writes about positionality and dimensions of identity. She calls for personal exploration of privileged/dominant and subordinate dimensions of identity with an open mind and curiosity. She recommends that people share personal stories associated with aspects of their identity to uncover biases that might come up in cultural humility practice. Issues of race, ethnicity, class, gender, disability, and other forms of hierarchy are present in academia and risk being replicated at community gatherings and one-on one-interactions. Considerable research on implicit or unconscious bias has emerged since the late 1990s to expand the understanding of thought patterns, prejudice, and discrimination. By definition, people are unaware of their blind spots. Bias becomes pronounced in decision-making situations with limited time and high stress (Choudhury 2015). Therefore, receiving and giving feedback is a necessary part critical self-reflection and life-long learning. Most people do not like getting unsolicited feedback. At the same time, feedback is necessary and can help gain self-awareness.

5.2

Interpersonal Attributes

Most professionals are trained in Western communication skills that value personal expression and speech over listening. Yet, to practice cultural humility one must start “where the people are” with compassionate listening. Avoid the check list of cultural traits and practice respectful conversations that encourage rather than obstruct listening. Anticipate multiple cultural identities and become familiar with the intersection of identity, history, demographics, geography, and political leadership. Information gathering through dialogue is an important part of this level of impact and lays the foundation for all work that comes after. Hear what community concerns are and prioritize strengths, assets, and capacity instead of a narrow focus on problems. Interpersonal relationship building takes time and is foundational to social inclusion. Participate in formal community events and engage in casual activities. At the same time, remember the NO VISITORS sign in Fig. 1. Even with the best intentions, there is potential for negative unintentional impacts and misinterpretations based on the nature of power dynamics (Chávez et al. 2008). Code-switching a hidden discourse is important to recognize as an inevitable reality between outsiders and insiders. A key is being in touch with power “from within” at the personal level and power “with others” at the relational levels. It is imperative that power flow. To be inclusive takes not only being aware of power but being able to shift the balance of power, let go of control, and take action to make power more available to others. Collaboration between people, places, and disciplines moves cultural humility from idea to embodied practice.

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Organizational Attributes

Cultural humility is a practice that can hold two opposite or paradoxical realizations in the same moment. The ability to not identify with either opposite and be present with what is at different levels of experience, personal, social, and historical is what Tascon and Gatwiri (2020) theorize when they point to the need to unmask outdated reference points in structural and organizational power to form connections with community members and honor the strengths and resources inherent in diverse groups. Rajaram and Bockrath (2011) argue for incorporating cultural humility to tackle the impact of inequities on health disparities. The authors advocate for integration of self-critique and reflective inquiry of researcher’s social location beyond mastery of knowledge and communication skills to a deeper understanding of the underlying processes of power and privilege that create, support, and maintain existing health disparities. Aragon et al. (2015) tell the story of San Francisco’s Department of Public Health folding cultural humility into trauma-informed care through a workforce initiative for healing organizations: “A focus on self-awareness, trust and humility empowers staff to accept criticism and to learn from and grow with every human interaction” (Aragon et al. 2015, p. 32). The health department committed to providing mandatory cultural humility trainings for staff and creating regular events to discuss cultural humility as well as reviewing demographics between current employees, volunteers, and community members. Diverse community representation is essential. It is critical to hire staff with shared history, heritage, knowledge, and skill who can expedite trust and relationship building. Within organizations, it is especially important to pay attention to affinity bias, the unconscious tendency to get along with others who are most like oneselves. Affinity bias can limit social inclusion by excluding some voices in favor of others. Practicing cultural humility requires making the effort to bridge differences. Personal and organizational change creates new alliances and shifts culture. In some instances, key personnel may ultimately leave an organization feeling pushed out, which then changes the culture and dynamics of the organization.

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Conocimiento/Autobiography

Conocimiento (Anzaldúa 2015) offers an alternative method for critical selfreflection. Conocimiento is Spanish for “knowledge” as well as for “getting to know something or someone.” As such, conocimiento is a nonlinear personal account of healing and consciousness raising to engage readers in a conversation about what cultural humility means. This form of autobiographic writing intends to draw attention to activist-infused epistemology and bring a deeper awareness of cultural humility at the border of personal and social transformation. Using the first person voice in research blurs the boundaries between the self and the other as it challenges the unexamined authority of silent authorship (Ellis and Bochner 2000; Charmaz and Mitchell 1997). While storytelling can offer a range of cross-cultural perspectives for inquiry and political praxis (Jovin-Leeds and

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Agitarte 2015), Chimamanda Ngozi Adichie in her groundbreaking 2009 TED talk warns that to hear a single story about another person or a country risks critical misunderstanding. “The single-story,” she says, “creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. Sharing cultural stories can break the dignity of a people, our stories can also repair that broken dignity.” Author’s story of cultural and humility I have a persistent memory of my grandmother’s voice, the tone of her words, when she said: “Hay que ser humilde.” This Spanish language phrase, repeated at different times in my life, insisted that humility was the best way to be. I vehemently disagreed. Growing up in a multiracial female body, and coming from a family with a history of mental illness, poverty and inter generational trauma, I preferred cultural pride and educational achievement over humility. My faculty position at San Francisco State University exposed me to exciting opportunities for social inclusion. The campus is filled with vibrant classrooms of students speaking different languages, representing a range of socioeconomic levels and age groups from various racial, ethnic and religious backgrounds. Students with neurological diversity, members of the LGBTQ+ community, veterans, first generation and international students. Mid way through a career teaching community organizing in public health and developing an interest in community based global health, I took a temporary position at Boston University as a “traveling faculty” in their innovative International Honors Program (IHP). I was curious to learn from teaching ivy league students. Most IHP students came from privileged backgrounds with a track record of academic success. These students were intentional, goal oriented pre med and health science majors from predominantly white families whose members had gone to college. The warmth of an authentic learning community was quickly established through experien tial learning and popular education. We developed a learning community that studied in Boston and then traveled to India, China and South Africa spending one month in each country to compare and contrast health care systems and traditional healing practices. In every country I taught alongside country based community partners representing non governmental organizations. The students were humble, kind and genuinely cared for one another and for the health of the people they were learning about. While in Cape Town, two weeks before the program’s completion, I got a call that forced me out of the learning zone. Whatever was going on at home was inconceivable. My personal life had spilled over into my professional identity and I had to leave the program to be with my family. Nothing could have prepared me for the next phase of my life. The ground shifted under me, pushing me to the unknown. In 24 hours I came face to face with a health system that divides the body from the mind as it parcels out resources. Eyes with pupils fully dilated, body thin from days of not eating or sleeping, my teenage son looked into my eyes for help. Policemen had intervened and placed my son in handcuffs because they were the local “crisis intervention response team.” My former husband explained that he had to call the police because he was afraid and paralyzed by a state of unknowing. Doctors, security guards and nurses showed me papers I had to sign. Injections, pills, and diagnosis made me feel small, alone, and powerless. All intelligence was sucked out of me. From the most unpleasant place of humility I learned a new vocabulary from people experiencing mental illness. This new culture made me recognize my blind spots.

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The invisible privilege and freedom I had once experience became visible as I learned what it means to be socially excluded, on the other side of the hierarchy of mainstream culture. Stigma stings but humility was what enabled me seek help and join communities I did not even know existed. Dealing with maternal guilt and intense anxiety I searched for solutions while my marriage ended, my father experienced dementia and passed away. Remembering my grandmothers’ admonition, “Ay que ser humilde,” I surrendered completely, never giving up hope in my son or in God’s presence. We attended therapy sessions and support groups. We made nutritional changes and prioritized a regime of exercise, prayer, medita tion and sleep. Humbly, I updated my beliefs about people with mental illness and confronted by biases. Coming to terms with mental illness gave me a visceral understanding of cultural humility as an act of solidarity and self care. In turn, I have committed to influence public health to include cultural humility and personal wellness into the curriculum. My son’s determination and healing practices enabled him to graduate from college, play competitive sports and study abroad. I will never know if our experiences with the medical industrial complex came as a curse or a blessing. What I do know is that self care is a requirement for public health and cultural humility is at the heart of social inclusion. Part of my healing process has been the commitment to teach cultural humility with different populations using the universal language of film, art and theater while making educational materials freely accessible. This is the way I acknowledge the intangible aspects of receiving support from a higher source. Walking the path of humility is my GPS to navigate through uncertainty and become comfortable with discomfort. Being impeccable with my words and practicing deep listen ing, without interrupting others, I work on using compassionate language with myself and others. I am clear that nothing can be learned unless I have the humility to learn.

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Teaching and Learning Cultural Humility Learning is the very essence of humility, learning from everything and from everybody. There is no hierarchy in learning. Krishnamurti’s Notebook (1976)

The experience of vulnerability is a key to the education of health professionals and the practice of community-based participatory research (Katz and MurphyShigematsu 2012; Chávez et al. 2008). Teaching cultural humility has the potential to build community identity by uniting personal experience with a range of critical public health issues. The Chi of Organizing by Juana Alicia is a helpful representation of what it looks like to be a balanced health practitioner aware of her body/mind and in solidarity with others and their struggle (see Fig. 4). Healing herself and healing justice, she teaches cultural humility cultivating a solution-oriented, positive learning environment. The image represents equanimity, social inclusion, and personal change all happening synergistically. The paradox of resistance and acceptance, exclusion and inclusion, appear within the ying-yang symbolism as complimentary rather than opposing forces. Cultural humility training can renew feelings of gratitude for the relationships that sustain and transform communities and individuals through health and healing. Teaching modules range in format from one hour presentations to semester long courses where educators have an opportunity to co-create environments with students who feel safe, supported, and respected

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Fig. 4 The chi of organizing, 1800  2400 , watercolor on paper, Juana Alicia ©1997, World Rights Reserved

(Chávez et al. 2006). More than a study of methods and theories, teaching cultural humility proposes an embodied experience where students develop as collaborative leaders and recognize themselves and each other as members of a community that has learned to transcend individual differences and recognize, accept, and honor those differences. Yang (2017, p. 210) points out that humility in the teaching role is crucial because it balances two other aspects: authority and power. He emphasizes that the best teachers create an alchemical process of reciprocal learning: “The humility of teachers bringing students beyond where they are as teachers.” Smith et al. (2007, p. 654) recommend that teaching curricula address three areas of racial and ethnic health disparities by focusing on: 1) examining and understanding attitudes such as mistrust, subconscious bias and stereo typing, which practitioners and patients may bring to clinical encounters; 2) gaining knowl edge of the existence and magnitude of health disparities, including the multifactorial causes of health disparities and the many solutions required to diminish or eliminate them; and 3) acquiring the skills to effectively communicate and negotiate across cultures, languages, and literacy levels, including the use of key tools to improve communication.

To develop a commitment to eliminating inequities in health care students and teachers must explore power and develop partnerships based on trust and mutual

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respect. Simultaneously, they must be introspective and examine their membership role. The learning environment must build community capacity in order to maintain enthusiasm for the subject. Guest speakers and community partners add practical insights as well as deepen consciousness with their stories of change. A signature assignment for teaching cultural humility in higher education must be uplifting and motivating. Students describe a community of their choice as insiders, outsiders or both. They decide which aspects of the community they want to highlight – health concerns, cultural issues, language, food, norms, political and economic issues – and engage community members in open-ended respectful conversations. Students select course readings that resonate with what they are learning and describe their experiences of critical self-reflection and community awareness through a written report and/or multimedia presentation that summarizes conocimiento: (1) the problem solving process they followed to complete the project; (2) the major challenges encountered during the process and the corresponding solutions; and (3) the relevance of learning about cultural humility in their own life.

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Limitations of Cultural Humility Our memories of experiences are rendered into something like a narrative form. To a greater or lesser extent, this is a natural function of memory. The truth of “whatever is told” will differ, however slightly, from what actually happened. This, however, does not make it a lie; it is unmistakably the truth, albeit in another form. Haruki Murakami (2001, p. 234)

The strength of cultural humility can also be the source of its weaknesses. Cultural humility can be misused or distorted with false or forced practice. The framework of cultural humility is difficult to measure because it is based on values that operate at various levels of impact and require a body/mind connection to impart. This makes cultural humility subjective and open to interpretation. At the same time, the challenges in measurement are exactly what makes the approach come alive and resonate with practitioners. Hook et al. (2013) and Worthington et al. (2016) developed evidence-based, customer-rated measures to assess perceptions of cultural humility and inform the practice. From a perspective that “starts where people are” it is not possible to embrace a one size fits all approach to cultural humility with evidenced-based practices. Adequately assessing cultural humility requires “objective” indicators while taking into account subjective judgements, meanings, and perceptions. This is difficult because exclusion and inclusion are personal experiences and the views of those affected must not be disregarded.

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Conclusion and Future Directions

Cultural humility is systemic, institutional, relational, and deeply personal. This chapter has outlined broad themes of embodied cultural humility in public health training and practice at three different levels of impact. A personal story was shared to illustrate embodied practice. Higher education considers issues of diversity, but

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many times the focus lacks introspection. Dolmage (2017) points out that while higher education has made efforts to be more inclusive of people with disabilities, the ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at emotional, mental, or physical weakness. To be truly socially inclusive, cultural humility research and practice needs to go beyond assessing effects of policies and programs on culturally diverse populations to advocate for a healthy workforce that values a spiritual, creative, and multicultural understandings of cultural humility. Cultural humility is a practice of story-sharing and relationship-building that includes and goes beyond protests, policy making, and community service. Cultural humility is a life-long practice that requires social inclusion practitioners and researchers to be aware of who they are and who they are not. Human beings are uniquely different, with personal stories, contexts and frames of reference.Yet, as a whole people want to feel included and belong. Social exclusion occurs when people are prevented from taking part in society and face unknown aspects of life. Within the crisis of the world that one is facing now, it is likely that social exclusion of some groups will continue to expand in both the social and health areas. Social inclusion is essential for cultural humility to walk the path of health, well-being, and healing in the face of disease and exclusion. Cultural humility invites interdependence because “the time of the lone wolf is over.” Native American wisdom invites one to “gather and banish the word struggle from our attitude and our vocabulary. All that we do now must be done in a sacred manner and in celebration. We are the ones we’ve been waiting for” (Hopi Prophecy 2000).

References Airhihenbuwa, C. (1995). Health and culture, beyond the Western paradigm. Thousand Oaks: Sage. Anzaldúa, G. (1999). Borderlands/La Frontera: The new mestiza. Aunt Lute Books. Anzaldúa, G. (2015). Light in the dark/luz en lo Oscuro: Rewriting identity, spirituality, reality. Durham, NC: Duke University Press Books. Aragon, T., Garcia, B., & the Population Health Division Leadership Team. (2015). Designing a learning health Organization for Collective impact. Journal of Public Health Management and Practice, 21(Suppl 1), S24 S33. Charmaz, K., & Mitchell, R. G. (1997). The myth of silent authorship: Self, substance, and style in ethnographic writing. In R. Hertz (Ed.), Reflexivity and voice (pp. 193 215). Thousand Oaks: Sage. Chávez, V. (2017). Appendix 4: Cultural humility: Reflections and relevance for community based participatory research. In M. Minkler & N. Wallerstein (Eds.), Community based participatory research for health: From process to outcomes (3rd ed.). San Francisco: Jossey Bass. Chávez, V., Turalba, R., & Malik, S. (2006). Teaching public health through a pedagogy of collegiality. American Journal of Public Health, 96(7). Chávez, V., Duran, B., Baker, Q., Avila, M., & Wallerstein, N. (2008). The dance of race & privilege in community based participatory research. In M. Minkler & N. Wallerstein (Eds.), Community based participatory research for health: From process to outcomes (2nd ed.). San Francisco: Jossey Bass. Choudhury, S. (2015). Deep diversity: Overcoming us vrs them. Canada, Toronto: Between the Lines.

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Dolmage. (2017). Academic Ableism. Disability and higher education (Illustrated ed.). Ann Arbor, MI: University of Michigan Press. Ellis, C., & Bochner, A. P. (2000). Autoethnography, person, narrative, reflexivity: Researcher as subject. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 733 768). Thousand Oaks: Sage. Faronda, C., Baptiste, D. L., Reinholdt, M., & Ousman, K. (2016). Cultural humility: A concept analysis. Journal of Transcultural Nursing, 27(3), 210 217. Gallardo, M. (2014). Developing cultural humility: Embracing race, privilege and power. Thou sand Oaks, CA: Sage. Greene Moton, E., & Minkler, M. (2019). Cultural competence or cultural humility? Moving beyond the debate. Health Promotion Practice, 21(1), 142 145. Hook, J., Davis, D., Owen, J., Worthington, E., & Utsey, S. (2013). Cultural humility: Measuring openness to culturally diverse clients. Journal of Counseling Psychology, 60(3), 353 366. Hyde, C. (2012). Challenging ourselves: Critical self reflection on power & privilege. In M. Minkler (Ed.), Community organizing and community building for health and welfare (3rd ed.). New Brunswick, NJ: Rutgers University Press. Israel, B. A., Schulz, A. J., & Parker, E. A. (2008). Critical issues in developing and following community based participatory research principles. In Minkler & Wallerstein (Eds.), Community based participatory research for health: Process to outcomes (2nd ed.). San Francisco: Jossey Bass. Jovin Leeds, G., & Agitarte. (2015). When we fight, we win: Twenty first century social movements and the activists that are transforming our world. New York, NY: The New Press. Juarez, J., Marvel, K., Brezinski, K., Glazner, C., Towbin, M., & Lawton, S. (2006). Bridging the gap: A curriculum to teach residents cultural humility. Family Medicine, 38(2), 97 102. Katz, R., & Murphy Shigematsu, S. (2012). The experience of vulnerability: a key to the education of health professionals. In Synergy, healing and empowerment: insights from cultural diversity. Alberta: Brush Education. Krishnamurti, J. (1976). Krishnamurti’s notebook. United Kingdom: Krishnamurti Foundation Trust UK. Murakami, H. (2001). Underground: The Tokyo gas attack and the Japanese psyche. New York: Vintage Books International. Murphy Shigematsu, S. (2018). From mindfulness to Heartfulness. Oakland, CA: Berrett Koehler Publishers. Napier, D. (2017). Cultural context of health & well being: using a cultural context of health approach to enhance policy making, World Health Organization Policy Brief No. 1 in https:// www.euro.who.int/__data/assets/pdf_file/0009/334269/14780_World Health Organisation_ Context of Health_TEXT AW WEB.pdf Ortega, R., & Coulborn, F. (2011). Training child welfare workers from an intersectional cultural humility perspective: A paradigm shift. Child Welfare, 90(5), 27 49. Owen, J., Jordan, T., Turner, D., Davis, D., Hook, J., & Leach, M. (2014). Therapists’ multicultural orientation: Client perceptions of cultural humility, spiritual/religious commitment, and therapy outcomes. Journal of Psychology and Theology, 42(1), 91 98. Pastor, M., & Blumenfield, K. (2012). Lessons for L.A. from 1992, Los Angeles Times, April 25, 2012. http://articles.latimes.com/2012/apr/25/opinion/la oe 0425 pastorblumenfield l.a. riots reform 20120425 Rajaram, S., & Bockrath, S. (2011). Cultural competence: New conceptual insights into its limits and potential for addressing health disparities. Journal of Health Disparities Research and Practice, 7(5), 82 89. Winter 2014. Ross, L. (2010). Notes from the field: Learning cultural humility through critical incidents and central challenges in community based participatory research. Journal of Community Practice, 18, 315 335. Smith, W., Betancourt, J., Wynia, M., Bussey Jones, J., Stone, V., Phillips, C., et al. (2007). Recommendations for teaching about racial and ethnic disparities in health and health care. Annals of Internal Medicine, 147, 654 665.

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Stroh, P. (2015). Systems thinking for social change. White River Junction, VT: Chelsea Green Publishing. Tascon, S., & Gatwiri, K. (2020). Towards cultural humility: theorizing cultural competence as institutionalized whiteness. Social Work and Policy Studies: Social Justice Practice and Theory, 3(1), 1 16. Retrieved https://openjournals.library.sydney.edu.au/index.php/SWPS/article/view/ 14406 Tervalon, M., & Murray Garcia, J. (1998). Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Healthcare for the Poor and Underserved, 9(2), 117 125. U.S. Department of Health and Human Services. (2009). Transforming the face of health pro fessions through cultural and linguistic competence education: The role of the HRSA Centers of Excellence. http://www.hrsa.gov/culturalcompetence/cultcompedu.pdf UNHCR. (2020). UN Refugee Agency figures at a glace. https://www.unhcr.org/en us/figures at a glance.html Wallerstein, N., & Duran, B. (2010). Community based participatory research contributions to intervention research: The intersection of science and practice to improve health equity. American Journal of Public Health, 100(Suppl 1), S40 S46. Warren, R. (2002). The purpose driven life: What on earth am I Here for? Grand Rapids, MI: Zondervan Books. Worthington, E., Davis, D., & Hook, J. (2016). Handbook of humility. New York, NY: Routledge. Yang, L. (2017). Awakening together: The spiritual practice of inclusivity and community. Sommerville, MA: Wisdom Publications.

Social Inclusion and Cultural Competence Moving towards Cultural Safety in Research and Practice Tinashe Dune, Robyn Williams, Kim McLeod, Rocco Cavaleri, and Alex Workman

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Development of Cultural Competence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Cultural Competence in Contemporary Times . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Development of Cultural Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Defining Cultural Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Cultural Safety and Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Implementing Cultural Safety for Social Inclusion in Research and Practice . . . . . . . . . . . . . 5.1 Principle 1: Self Awareness and Self Reflection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Principle 2: Reflecting on Social Constructions, Social Determinants, and Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Principle 3: Exploring Diversity and Difference in Experiences and Expectations of Health and Well Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Principle 4: Becoming Familiar with the Principles of Cultural Safety . . . . . . . . . . . . . . 5.5 Principle 5: Understanding the Importance of Cultural Safety and Its Relevance to Health Policy and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Principle 6: Engaging in Culturally Safe Research and Practice . . . . . . . . . . . . . . . . . . . . . 5.7 Principle 7: Applying Principles for Cultural Safety with Diverse Populations . . . . . 5.8 Principle 8: Evaluating the Impact of Cultural Safety in Research and Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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T. Dune · R. Cavaleri · A. Workman (*) School of Health Sciences, Translational Health Research Institute, Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Penrith, NSW, Australia e mail: [email protected]; [email protected] R. Williams College of Indigenous Futures, Arts & Society, Charles Darwin University, Darwin, NT, Australia e mail: [email protected] K. McLeod School of Social Sciences, University of Tasmania, Launceston, TAS, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_8

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6 Cultural Safety and Social Inclusion in Research and Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165

Abstract

This chapter discusses the movement away from “cultural competence” toward the negotiation of “culturally safe” practices and environments for engaging diverse communities. Firstly, the concept of cultural competency is introduced, and the strengths and limitations of this model discussed. Cultural safety is then presented as a model that extends beyond the acquisition of practitioner skills and knowledge, requiring a broader examination of power differentials inherent in research and practice, as well as concerted efforts to address such issues. Readers are provided with examples of how cultural safety can be operationalized to promote social inclusion. The chapter highlights the roles of a variety of collaborators required to ensure culturally safe approaches that engage individuals, communities, and systems. The chapter draws on upon intersectionality theory to facilitate consideration of the multiple and overlapping ways in which culturally safe approaches to research and practice can improve social inclusion and population health outcomes. The chapter concludes with a summary of the key elements of cultural safety and a guide to their implementation in research and practice. Keywords

Cultural competence · Cultural safety · Intersectionality · Diversity

1

Introduction

Social inclusion requires diverse approaches to participation in both research and practice that go beyond rigid frameworks and positivist structures. Over the last 50 years, there has been a growing body of work on cultural competence. This evidence focuses on how to develop the skills of people who work in socially and culturally diverse settings in ways that promote social inclusion and respectful engagement with a variety of people, communities, organizations, and systems. The concept of cultural competence has been of use to researchers and health practitioners because it gave them a way to consider their role in the outcomes of research and work practice. As evidence and outcomes related to the efficacy of cultural competency emerged, there has also been growing acknowledgment of the complex health needs of diverse communities, plus the need for broader inclusion in the ways that different groups were included or engaged in research and practice. Beginning in the 1980s, cultural safety was developed out of Maori nurses and students experiences in the education and health systems. Cultural safety is a model that addresses power and social justice, whereas cultural competency tends to presume acceptance of particular perspectives with a specific focus on the practitioners (researchers and/or health) and their individual cultural standpoint.

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In comparison, cultural safety requires practitioners to engage in self-reflexive learning, relationship-building, and personal change, with the aim of achieving culturally safe practice. Social inclusion is compatible with cultural safety as both concepts reinforce intersectional ways of seeing the world and others, and acknowledging multiple perspectives that do not only focus on ethnicity or specific cultural markers. To better understand the ways that cultural competence and cultural safety are different, as well as their contributions to socially inclusive research and practice, some definitions and history on these concepts is needed.

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The Development of Cultural Competence

Exploration of the origins of the term “cultural competence“ indicate its emergence in the United States in 1970s (McKenzie 2008). As with many models for research and practice, McKenzie (2008) notes that cultural competence developed as a product of both theory and circumstance. With regard to circumstance, the United States has always been perceived to be socioculturally and ethnoreligiously diverse. According to McKenzie (2008), despite the diversity of groups travelling to the USA to experience religious freedom in the 1800s, the country remained remarkably mono-cultural as the Northern European settler cultures invaded. This homogeneity was altered by increasing voluntary immigration and forced immigration through slavery. Even so, migration regulations and quotas differed between emigrating countries thereby decreasing the size and impact of visible diversity. As many White migrants from Eastern European nations increased in number they were able to work together to “navigate the system, pull themselves out of poverty and integrate” (McKenzie 2008, p. 6). The advantages that White people experienced was not mirrored by the experiences of African Americans, for example. However, the bell calling for cultural competence in services was not rung. McKenzie (2008, p. 6) explains, The history of slavery, socio economic barriers and the Jim Crow Laws mandated that African Americans should be ‘separate but equal’ resulting in public schools, public places and public transportation having separate areas, toilets and restaurants for whites and blacks. The lack of true co location meant that second class services for African Americans were accepted. Cultural competence was not a big issue.

This stark lack of social inclusion began to change with the civil rights movement and the repeal of the Jim Crow Laws between 1954 and 1965. Simultaneously, changes to the immigration act were passed leading to increased diversity and migration of other sociocultural and ethnoreligious groups. Notably, East Asian migration increased in the 1960s and the Vietnam war resulted in a significant increase of refugees in the USA (McKenzie 2008). With this growing diversity, systems including schools, social services, and health care providers were often out of their depth in terms of handling so many differing groups of people. Simultaneously, researchers became very interested in how these systems would respond and engage individuals and communities and what impacts this might have on diverse well-being outcomes (Dune et al. 2021). Unsurprisingly,

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neither research or practice settings were properly prepared for engaging groups whose cultural experiences, beliefs, and norms were so different to their own. The lack of diversity within various areas of research and practice began to show and monocultural models based on European ways of knowing and being needed to challenged and changed. From here, the concept of cultural competence was born. In the 1970s, US mental health and social services began developing cultural models of care in an attempt to more effectively engage with East Asian refugees who had different cultural models of understanding, spoke other languages, and who had complex needs that were not being addressed by Eurocentric systems. A divergence from Eurocentric research and practice was also needed in low socioeconomic areas where African American and Hispanic inequality and exclusion were significant issues for example. Cultural competence was initially focused on the individual and on awareness, knowledge, attitudes, and skills. It was for the practitioner to understand the individual in order to offer a service. This was the dominant model for considering cultural competence until the work of the National Center for Cultural Competence at Georgetown University. McKenzie (2008, p. 6) explains how those researchers expanded cultural competence from a focus on the individual to communities. Faced with increasing diversity, differences in rates of mental illness and differences in illness models the Centre decided to systematically consider what it could do to improve the service that it offered. Their framework goes further than that of individual cultural compe tence reflecting frustration with the fact that the individual approach did not seem to be delivering change.

Cultural competence, therefore, emerged as a framework for addressing diversity and inequality in the USA, and the social history of the USA is crucial for understanding how the notions of culture and competence have been configured (Kirmayer 2012).

2.1

Cultural Competence in Contemporary Times

Although much has changed over the past 50 years, the goal upon which cultural competence was developed has yet to be achieved. This goal, ultimately, is to improve well-being outcomes for all people – to truly be socially inclusive in all areas of life, research, and practice included. However, negative health outcomes and experiences of minority populations across a range of health and social care settings persist and are well documented (see for example Bitney 2012). In general, the core of negative outcomes and experiences are related to systems and models of health and well-being based on Eurocentric and racist frameworks (Anderson 2003). To address inequities and negative well-being outcomes, some researchers and practitioners advocated for more widespread cultural competency (Olson et al. 2016).

2.1.1 Defining Cultural Competence The concept of cultural competence comprises knowledge, conviction, and capacity for action at an individual and organizational level in order to appropriately address

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Cultural Awareness

•The professional becomes sensitive to the values, beliefs, lifestyles and practices of the client and identifies their own values, biases and prejudices.

Cultural Knowledge

•The professional seeks information about other cultures and different worldviews, and how these views impact a client's health and wellbeing.

Cultural Skills

•The professional collects relevant cultural data regarding the client's presenting problem and accurately performs a culturally-informed health assessment.

Cultural Encounters

•The professional is involved in face-to-face encounters with clients from diverse cultures. This helps to refine or modify the practitioner's exisiting beliefs about a cultural group and prevents stereotyping.

Cultural Desire

•The professional must be motivated to become involved in the process of becoming culturally competent.

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Fig. 1 Components of culturally competent research and practice

the health and social needs of diverse populations (Audigier 2000). Eisenbruch (2004) also emphasizes the skill-based notion of competence that encompasses the system (including researchers and practitioners) no less than the patients or clients. As such, cultural competency has been defined as “a set of congruent behaviors, attitudes and policies that come together in a system, agency or among professionals and enable that system, agency or those professionals to work effectively in crosscultural situations” (National Health and Medical Research Council 2014, p. 6). Building health care workers’ capacity and ability to become self-aware and to reflect on their constructions about others is an important aspect of cultural competency training (Olson et al. 2016). According to Campinha-Bacote (2002), health professionals, specifically those working in health care, need to consistently access training to develop capacity in cultural awareness, knowledge, skill, encounters, and desire, as summarized in Fig. 1 which has been adapted from De Beer and Chipps (2014) specifically for professional across many professions workers. By developing and embedding these components, a cultural competence model can promote the development and maintenance of a positive alliance between researchers and practitioners and their participants or clients (Olson et al. 2016), with the aim of improving client health and well-being.

2.1.2 Limitations of Cultural Competence Although cultural competence has proven helpful across a many contexts, it has a number of limitations that reduce its potential impact on social inclusion specifically and sustainable improvement in health outcomes generally. First, it is acknowledged that the components of the above cultural competence model (illustrated in Fig. 1) seem somewhat simplistic and two dimensional. Campinha-Bacote (2002) sets out a more depth model with elements of cultural competence are skill-based and practitioner-focused constructions, and understandings and experiences of difference. As the focus in on the people with power who inhabit Eurocentric social and health systems, a sole focus on cultural competence is limited as it does not truly address the impact of racial dichotomies and hierarchies or

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address power imbalances that result in the perpetuation of disadvantage and devaluation of non-White frameworks, perspectives, or people (Kirmayer 2012). Second, due to the focus on the skill development of individuals who work in institutions with Eurocentric frameworks with little room for adjustment, the integration of cultural competence into services and their organizational structures, policies, and processes is slow and sometimes even resisted (Dune et al. 2021). Further, the development of cultural competence seems to better reflect the needs of practitioners rather than service users. When sociopolitical contexts change (e.g., increased refugee migration), practitioners can feel a range of emotions, discomfort, and resentment for example, and this in turn informs their behaviors and interactions with other people. In order for practitioners to work effectively in their environments, organizations provide (or mandate) additional professional development and the service evolves (Dune et al. 2021). However, when services or organizations cannot adapt to change, then the practice and practitioners does not evolve and may even become inefficient, ineffective, or toxic to all who engage with those services or organizations (Dune et al. 2021). Research has been integral to the realization that cultural competence has its strengths but also important limitations. Academic government and non-government organizations “can offer leadership and develop evidence-based, ethical and moral frameworks but the context has to be right for them to be taken up” (McKenzie 2008, p. 7). However, even where professional development of cultural competence is successful (although by what standards is success measured?), emerging knowledge argues that simply having achieved competence is not enough (Furlong and Wight 2011). One must know what to do with those skills and when to use them in order to facilitate culturally safe experiences and environments for all. Finally, drawing on research from Australia, the construct of cultural competence was interrogated by two social work academics, Furlong and Wight (2011) using a single case study. The authors concluded that the attraction of cultural competence is that it can be “packaged and ticked-off as a box that can be, or has to be, filled in” (Furlong and Wight 2011, p. 52). This cultural competency approach is of concern as it assumes that non-Indigenous people have the expertise and knowledge to assess health professionals’ competency in someone else’s culture and that culture is a measurable commodity (Furlong and Wight 2011).

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Development of Cultural Safety

New Zealand is the birth place of the term “cultural safety,” a term that represents a fundamental and conscious move away from cultural competence discourse (Curtis et al. 2014). The cultural safety model was originally developed and defined by Māori nurses (working with Pakeha colleagues) and validated by Māori family and community. Dr Irihapeti Ramsden was the main driver behind the development of the cultural safety model and her 2002 PhD thesis stands as the seminal work in this area. Cultural safety has a crucial role to play in Australian health care as it provides a decolonizing model of practice based on communication, negotiation, and acknowledgment of

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Whiteness and privilege (Best 2018; Mkandawire-Valhmu 2018; Taylor and Guerin 2019; Wepa 2015). These actions are a means to challenge racism at personal and institutional levels and to establish trust in research or service encounters and is predicated upon working toward social justice and better well-being outcomes for people experiencing inequity. The model is a focuses upon how a professionals does something, not just what they do, in order to support culturally safe practice (Nursing Council of New Zealand 2011, p. 7). Importantly, a fundamental component of cultural safety is the acknowledgement that it is the ultimately receiver of services who determines whether or not their care may be deemed culturally safe (McEldowney and Connor 2011; Richardson 2012) – this includes staff as well as consumers engaging with diverse research or practice settings. Cultural safety, therefore, works on the premise that it is not just clients who have cultures, but also professions and workplaces (Dune et al. 2021). Thus, cultural safety is as applicable to working with colleagues as it is to actual health care. Unlike cultural competence or other models like cultural awareness, cultural safety is not about attaining certain standards or progressing along a linear continuum of achievement (Dune et al. 2021). The process is a lifelong one, necessitating ongoing critical reflection on one’s own culture and self rather than focusing on others. We also need to be aware of potential implications, while remaining adaptable and understanding in our interactions with others (Cox 2016). Identifying differences between others and ourselves is straightforward, but understanding our own culture and its impact on how we interact and behave is much more nuanced. Many researchers across the social sciences expound the notion that people in multicultural contexts must understand certain factors about working cross-culturally (Betancourt 2003; Tseng and Streltzer 2015; Wepa 2015). The term “working crossculturally” is used in this context to describe any interactivity between members of distinct cultural groups and should not be confused with cultural safety or culturecentered approaches (Dutta 2008). One of the main reasons for health professionals needing to develop cross-cultural understandings is that their own beliefs and actions will influence the health care outcomes of their clientele. Indeed, cultural safety in health care contexts is contingent upon effective communication, self-reflection, cultural self-awareness, and enacting necessary changes to cultural practice.

3.1

Defining Cultural Safety

Cultural safety is defined as: The effective nursing practice of a person or family from another culture and is determined by that person or family. Culture includes, but is not restricted to, age or generation; gender; sexual orientation; occupation and socioeconomic status; ethnic origin or migrant experience; religious or spiritual belief; and disability. The nurse delivering the nursing service will have undertaken a process of reflection on his or her own cultural identity and will recognise the impact that his or her personal culture has on his or her professional practice. Unsafe cultural practice comprises any action which diminishes, demeans or disempowers the cultural identity and wellbeing of an individual (Nursing Council of New Zealand 2011, p. 7).

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Cultural safety is an iterative and ongoing process that takes into account peoples’ unique needs through self-reflection, cultural self-awareness, and an acknowledgement of the influence of these factors on health care provision (De Souza 2008; Ramsden 2002). Importantly, cultural safety uses a broad definition of culture that is not limited to ethnicity, but constitutes a range of ethnocultural factors such as age/generation, gender, sexual orientation, socio-economic status, spiritual beliefs, and ability (Cox 2016). It does not focus upon interactions with a single culture specifically, but grapples with racism, power, and inequity in health care more holistically. This broad appreciation is required when challenging prejudice and discrimination at personal and institutional levels and establishing trust in all health care encounters (Eckermann et al. 2010; Taylor and Guerin 2019). In summary, cultural safety is a process of working in partnership and negotiating an environment that is spiritually, socially, emotionally, and physically safe. By contrast, unsafe cultural practice is any action that diminishes, demeans, or disempowers a group or individual’s cultural identity or well-being.

3.1.1 Cultural Safety Principles Learning about diversity and difference can be exciting and invigorating but can also be challenging and confronting. This may be the case for those who have had little opportunity to engage deeply and holistically with people who are different from themselves or those for whom professional experiences or organizational cultures were mono-cultural. In order to engage in the process of learning about, and then negotiating, culturally safe practice, the following elements are required. Importantly, these steps occur simultaneously and are intertwined. These principles include: Principles of Cultural Safety (Dune et al. 2021)

• Principle 1: Consistent self-awareness and self-reflection. • Principle 2: Reflecting on social constructions, social determinants and intersectionality. • Principle 3: Exploring diversity and difference in experiences and expectations of health and well-being. • Principle 4: Becoming familiar with the principles of cultural safety. • Principle 5: Understanding the importance of cultural safety and its relevance to policy and advocacy. • Principle 6: Engaging in culturally safe research and practice. • Principle 7: Applying principles for cultural safety with diverse populations. • Principle 8: Evaluating the impact of cultural safety in research and practice.

The terminology used in the above principles differs from much of the terminology used to describe the elements needed when working toward social inclusion. There is limited literature referring to the inconsistent use of and confusion about

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cultural safety terminology. Outside of this chapter, readers may see many terms including cultural awareness, cultural sensitivity, cultural appropriateness, cultural competency, and cultural safety are often used interchangeably, even though they do not share the same meaning. This confusion and inconsistent terminology pervade health care literature. It is, therefore, important for readers to have a clear sense of what cultural safety is not. 1. Cultural awareness. This is the beginning of a continuum, representing the initial steps toward understanding that there is difference between cultures. Cultural awareness education usually involves informing people to specific cultural aspects of people’s lives and behaviors, (such as “rituals” or “beliefs”) rather than the emotional, socioeconomic, and political contexts in which people exist. Cultural awareness training comprises selected “facts” about groups and is often a ”recipe” or “cookbook” approach. 2. Cultural competence. This term is also problematic as it assumes an endpoint or point at which one may be deemed “competent.” A key feature of this approach is the focus on understanding the “other” who has “culture,” detracting from understanding one’s own self and culture. In addition, cultural competence locates “difference” in others, thus perpetuating and reinforcing the invisible privilege/s of dominant groups in society. 3. Cultural responsiveness. This has its origins in Northern America and is a relative of the earlier work of transcultural nursing and the later work of cultural competency. Indigenous Allied Health Australia (IAHA) defines cultural responsiveness as an action of cultural safety – a negotiated process of what constitutes culturally safe health care as decided by the recipient of that care. It is also clearly about the centrality of culture and how that shapes each individual, their worldviews, values, beliefs and attitudes, and their interactions with others. This is a more useful consideration of cultural safety as defined by the recipient (in this case IAHA). Cultural safety provides a means to examine the ways in which people are treated in society and how they are affected by systemic issues and social determinants of health. This model represents a paradigm shift from providing care regardless of who an individual is, to acknowledging that each person’s identity is a central tenant of their health and well-being (Eckermann et al. 2010; Taylor and Guerin 2019).

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Cultural Safety and Intersectionality

This chapter draws upon intersectionality theory to assist the reader in considering the plethora of ways in which culturally safe practices can improve social inclusion and population health outcomes. Kimberlé Crenshaw, originator of the term “intersectionality,” argues that we need to look at the intersection of race and gender when understanding the experience of women of color (Crenshaw 1989). Recent iterations of intersectionality focus on the interaction and influence of identify, race, social class, age, and other categories of difference on one’s life and social practices, as well as their relationship with health and well-being (Hankivsky et al. 2009;

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Vaughan et al. 2015). Analyses of independent determinants, such as age, are insufficient, as multiple social categories are experienced simultaneously (de Vries 2015; Moolchaem et al. 2015). These intersections potentially expose people to marginalization or discrimination across a range of social sectors (Glass et al. 2011). Intersectionality recognizes that people can be privileged in certain ways and disadvantaged in others. Many types of privilege impact the means by which people navigate their environments and whether or not they face discrimination. These are all things you are born into, not things you earned, that afford you opportunities that others may not have. Such privileges encompass, but are not limited to, the following social determinants: • Race: Being born with lighter skin is often associated with a range of privileges with which those possessing darker skin are not presented. • Citizenship: Simply being born in this country affords you citizenship privileges (such as leaving and re-entering Australia as many times as they wish) that non-citizens will never experience. • Class: Being born into a financially stable family can help guarantee your safety, well-being, and future opportunities. • Sexual orientation: Heterosexual individuals are often afforded privileges that non-heterosexual people cannot access or must fight for. • Sex: If you were born male, you will not experience sexual violence to the extent Australian women do. Indeed, 1 in 5 women in Australia have experienced sexual violence since the age of 15 (Australian Bureau of Statistics 2017). • Ability: If you were born able-bodied, you likely do not have to plan your life around disability access, braille, or other needs based on your abilities. • Gender identity: If you were born cisgender (that is, your gender identity matches the sex you were assigned at birth), you do not have to worry about the potential fallout of simple acts such as entering the “male” or “female” public toilets. It is important to acknowledge that no forms of privilege are identical, and that people lacking in one area of privilege do not necessarily understand what it is like to be lacking in other areas. For instance, race discrimination is not the same as sex discrimination. Recognizing privilege simply means being aware that some people have to work much harder to experience the things others take for granted (if they ever can experience them at all). Keeping intersectionality in mind allows us to examine these diverse, complex, and inter-related social determinants in relation to cultural safety in research and practice.

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Implementing Cultural Safety for Social Inclusion in Research and Practice

Recall the Principles of Cultural Safety presented in Sect. 4. To reiterate and assist in enacting cultural safety, this chapter concludes with a summary of the key elements of cultural safety and a guide to their implementation in research and practice.

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Principle 1: Self-Awareness and Self-Reflection

To promote culturally safe practices, one must first develop self-awareness and critically reflect upon their own cultures, upbringings, and beliefs. Development of this skill is essential across all health professions and central to one’s ability to adapt and respond to a constantly shifting set of expectations and experiences across local, national, and international contexts. It is important to differentiate between self-awareness and self-reflection. Selfawareness describes “the capacity of becoming the object of one’s own attention. In this state one actively identifies, processes, and stores information about the self. . .One becomes self-aware when one reflects on the experience of perceiving and processing stimuli. . .Self-awareness represents a complex multidimensional phenomenon that comprises various self-domains and corollaries” (Morin 2011, p. 808). Conversely, self-reflection “represents a genuine curiosity about the self, where the person is intrigued and interested in learning more about his or her emotions, values, thought processes, attitudes, etc. This type of introspection mostly leads to positive consequences” (Morin 2011, p. 809). With this distinction in mind, let us consider how researchers and practitioners can engage with self-awareness and then self-reflection. Reflection Box 1 Self-Awareness and Self-Reflection

Answer the following questions to begin exploring your identity and the social determinants that have an impact on your health and well-being. 1. 2. 3. 4. 5.

In which country were you and your parents born? From where did your ancestors originate? Where do you live? Is it an urban or rural area? What language(s) do you speak? Do you identify with a particular religion? If yes, which one?

This Reflection Box helps develop basic self-awareness related to elements of identity. For many, the answers to these questions will be easy to produce. However, for others, several of these questions may elicit distress because the answers are either unclear or are related to difficult experiences. It is, therefore, important to become aware of our experiences as diverse from those of others.

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Principle 2: Reflecting on Social Constructions, Social Determinants, and Intersectionality

With the basics of self-awareness and self-reflexive practice emerging, researchers and clinicians can engage with Principle 2 where they begin to critique social constructions, explore the impact of social determinants, and understand the

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relevance of intersectionality. Reflection Box 2 provides an opportunity to integrate these concepts into a growing capacity for cultural and diversity awareness – another step toward cultural safety. Reflection Box 2 Understanding Our Society and Ourselves

1. To what cultural, ethnic, social, or religious group/s do you belong? Write down all the cultural groups/identities you can think of. How might these impact on your sense of inclusion and belonging? 2. How do you think some of your colleagues may respond to the question above? How might these cultural groups shape their sense of inclusion and belonging?

Culturally safe researchers and practitioners are encouraged to delve further into their own identities and describe the cultural constructions that influence their identity. This includes consideration of the means by which social constructions (culture) influence social determinants (race, nationality, religion) and shape one’s health and well-being. Exploring these concepts from the perspective of a colleague or friend can offer some distance from oneself and provide an important opportunity to reflect upon the experiences of others. In doing so, the skill of reflection is strengthened, allowing the more comfortable self-reflection in the future.

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Principle 3: Exploring Diversity and Difference in Experiences and Expectations of Health and Well-Being

Following an exploration of Principles 1 and 2, you can now focus on extending your awareness to an increased capacity for interpreting the impact of difference on health and well-being. However, what health, well-being, or even inclusion means to one person may mean something entirely different to someone else. Consider your understanding, experiences, and definitions of health and well-being and reflect upon the questions below. Reflection Box 3 Defining Health and Well-Being

1. How do you define health and well-being? 2. What influenced or determined your understanding of health and wellbeing? 3. Is health or well-being something we possess or something we do? Or is it both? (continued)

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Reflection Box 3 (continued)

4. What are the essential components of health and well-being, and who determines that they are essential? 5. What is a healthy or well person? 6. What does a person need to have to make them healthy and well? 7. How do we learn about health and how might this influence our understandings of well-being?

These reflections represent a fundamental step in the exploration of health in accordance with the concepts of cultural safety.

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Principle 4: Becoming Familiar with the Principles of Cultural Safety

As stated previously, researchers and practitioners should develop an appreciation for the difference between “cultural competence” and true cultural safety. Understanding this distinction is important as it allows us to move beyond a focus on the acquisition of skills to a more nuanced engagement with what health care means to services users. Reflection Box 4 encourages reflection upon the conceptual confusion discussed throughout this chapter. Reflection Box 4 Conceptual Confusion

1. What is your understanding of the difference between cultural competence and cultural safety? 2. Do you feel that someone can be fully culturally “competent”? 3. Do you engage in culturally safe practices? How can you tell?

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Principle 5: Understanding the Importance of Cultural Safety and Its Relevance to Health Policy and Advocacy

To truly immerse oneself in the principles of cultural safety, an understanding of its relevance to social inclusion is integral. This may involve investigating the relationships between cultural safety and organizational systems that contribute to research and practice. Each encounter, whether with a patient directly or with colleagues, is an opportunity for advocacy that supports cultural safety for all stakeholders. Reflection Box 5 explores how cultural safety is embedded (or not) in familiar health care contexts.

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Reflection Box 5 Cultural Safety in Social Inclusion Policy

Consider the cultural safety definition above and think about the last time you were in a health care center, either as a patient or practitioner. How have you seen cultural safety principles embedded within the system? Was there recognition of cultural diversity and the capacity to meet the needs of people who are not of the dominant culture? You could also consider how these features might translate into policy.

Through consistent reflection upon systems as above, we can begin to see how cultural safety is not simply based on interactions between individuals but is also relevant to working within systems that may not be inherently designed to accommodate for diversity and difference.

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Principle 6: Engaging in Culturally Safe Research and Practice

Developing knowledge about cultural safety and relevant policies in relation to national, state, organizational, and professional guidelines, provides us with an impetus for translating understandings into practice. It is common to feel frustration and confusion regarding the multidimensional and complex nature of engaging with people from diverse backgrounds and the expectations upon us to provide a health experience that the client deems appropriate and beneficial. This chapter presents some of these contentions and encourages readers to reflect upon their thoughts and feelings in this regard. Additionally, this chapter encourages consideration of specific examples and potential strategies for social inclusion. Reflection Box 6 uses the example of health literacy to that effect. Reflection Box 6 Engaging in Culturally Safe Research and Practice

Many social programs focus on the delivery of services, education, and information to groups of people who have limited access and/or literacy in a particular health area. 1. Make a list of some elements of programs that successfully support marginalized communities to increase their health and well-being? Watch the PHC Case Study – Culture and care in Australia video: https://www.youtube.com/watch?v¼cC94MsIsje0 2. Does this program support some of the elements you noted down in Question 1? 3. How does this program put cultural safety into practice?

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Principle 7: Applying Principles for Cultural Safety with Diverse Populations

Notably, the “cultural” in cultural safety is a reflection of everything we are and everything we do and think. With this in mind, this chapter provides the opportunity to reflect upon various manifestations of culture/s across a diverse range of population groups. Across the Principles of Cultural Safety indicated above (1–6), there are many Reflection Boxes that support understandings of cultural safety and its relevance to a diverse array of experiences. Principle 7 focuses upon providing clinicians and researchers with an integrated reflection to consolidate the knowledge acquired throughout this chapter. To assess this ability to appropriately and/or accurately integrate knowledge of cultural safety into a tangible form, the following Reflection Box requires that we not only respond to a hypothetical job as a “cultural liaison” but do so in reference to our specific health discipline or area of work. This reinforces that cultural safety is relevant across all areas and all systems, including our own health care contexts. While definitions vary depending on context and population groups, a cultural liaison links people and communities (often from minority and marginalized groups) to services, supports, or resources. Cultural liaisons need to have a background in working with individuals from diverse sociocultural groups in a capacity related to the employer’s areas of service. Cultural liaisons may also have tertiary or vocational training in a discipline area related to the employer’s areas of service. Cultural liaisons may be from the same sociocultural, ethnic, or religious group as the communities they are hired to support but may also be from backgrounds different to their client groups. Job posting for cultural liaisons often seek candidates with some of the following skills that are linked to cultural safety.

Reflection Box 7 Connecting Diverse Individuals and Communities for Social Inclusion

To be successful, cultural liaisons should have: 1. Knowledge regarding different cultural communities, and the issues they face in becoming part of the larger community. 2. Respect for all people, regardless of their sociocultural, religious, or sexuality differences. 3. Enjoy working with individuals and families from a variety of backgrounds. 4. A keen interest in assisting individuals with diverse experiences to integrate into the larger community. 5. The desire to collaborate with others to support improved health and wellbeing outcomes. 6. A client-centered approach to engaging with individuals and communities. (continued)

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Reflection Box 7 (continued)

7. The ability to effectively and appropriately translate the needs of individuals and communities to the service and vice versa. Reflect on the above criteria and write a paragraph on how you meet the criteria. If you do not fulfil all the criteria, ask yourself which cultural safety principles you need to address and how this will help you support social inclusion in research and practice.

In mainstream services and practice, the term cultural safety is not always used in the context of seeking employees or in regular delivery of services. As a result, many readers may not see how being a Cultural liaison is of relevance to their learning about and applying cultural safety. Again, they may perceive such work to be within the purview of social workers and other community support workers. Engaging in Reflection Box 7 ensures that readers can begin to make meaningful connections between their discipline and cultural safety as well as learn how to articulate these links convincingly.

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Principle 8: Evaluating the Impact of Cultural Safety in Research and Practice

If we recall that culture includes all aspects of our existence and that health and wellbeing is experienced (or not) in every moment of life, then readers can evaluate the impact of culturally safe practice across any context. In fact, with some minor adjustments, readers can complete every one of the above tasks with colleagues or family members with different and thought-provoking answers at various points in time. As such, drawing on Reflection Box 8, self-awareness and self-reflection are at the core of cultural safety. Reflection Box 8 Really Knowing Yourself

1. What social determinants and social constructions influence your experience of working in a culturally safe environment? 2. What social determinants and social constructions affect your ability to provide care that is culturally safe?

It is imperative that we consistently evaluate our experiences, perceptions, and histories, as well our role in the production or destruction of culturally safe environments. Whether evaluation is formal or informal, the ability to evaluate the impact of culturally safe practice as experienced by others is completely dependent

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upon one’s ability to development, the capacity for critical self-evaluation across the past, present and future.

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Cultural Safety and Social Inclusion in Research and Practice

Now that you have been provided with an opportunity to reflect upon your own engagement with cultural safety, you should be able to effectively identify what is and what is not a culturally safe approach for social inclusion. Test your knowledge by exploring the following research and practice examples and note where the principles of cultural safety are present (or not) and what aspects of the examples you can take into your own research and/or practice. Research Box 1 Community as Teacher Model: Health Profession Students Learn Cultural Safety from an Aboriginal Community (Kline et al. 2013)

Project Summary Communication between health care professionals and Aboriginal patients is complicated by cultural differences and the enduring effects of colonization. Health care providers need better training to meet the needs of Aboriginal patients and communities. We describe the development and outcomes of a community-driven service-learning program in which health professional students learn with, from, and about the community through brief immersion in summer camps put on by an Aboriginal agency to teach their own youth about their culture. Outcomes were assessed by semi-structured interviews with students and community members. Health profession students learn about important cultural differences; become more aware of their own values, beliefs, and stereotypes; and consider ways to overcome communication barriers that interfere with developing trust with Aboriginal patients. These outcomes are retained long-term and influence relationships with patients in practice as well as career paths. Students are seen by the community as good role models. The opportunity to educate university students enhances the community’s sense of pride in their culture. Read the full article: https://files.eric.ed.gov/fulltext/EJ1046931.pdf 1. Which principles for cultural safety did the researchers address in their research? 2. How did the inclusion of these principles improve social inclusion? 3. Which principles for cultural safety were not addressed in the research? 4. How might the omission of these principles limit social inclusion? 5. What aspects of this work might you used in your future research and/or practice?

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Research Box 2 Cultural Safety and Professional Practice in Occupational Therapy: A New Zealand Perspective (Gray and McPherson 2005)

Project Summary This research examined occupational therapists’ attitudes to Cultural Safety for Maori clients. The main research tool was a semi-structured qualitative research interview. A cross-case analysis method was used to determine the major recurring themes. Thirteen participants with varied occupational therapy training backgrounds were interviewed. Current Cultural Safety education is designed to challenge health professionals’ attitudes towards those culturally different from themselves. Results suggest that maturity and personal experiences had significant bearing on these attitudes. Implications for occupational therapy include implementing a policy that stipulates compulsory Cultural Safety education as part of professional development. Findings may have relevance for other countries where significant ethnic differentials in health service success exist, such as Australia. Read the full article: https://onlinelibrary.wiley.com/doi/full/10.1111/j. 1440-1630.2004.00433.x?casa token¼CyfSlPYJkPUAAAAA%3A8SC b9liM5IAW094kvb4pXrXB7z4-0bhpEU NuQb8CMZBaCt3ZV3GP 7VG463PwK6RXSIdKh0Tm6CbeCC Tg 1. Which principles for cultural safety did the researchers address in their research? 2. How did the inclusion of these principles improve social inclusion? 3. Which principles for cultural safety were not addressed in the research? 4. How might the omission of these principles limit social inclusion? 5. What aspects of this work might you used in your future research and/or practice?

Research Box 3 Decolonizing Knowledge Development in Health Research Cultural Safety Through the Lens of Hawaiian Homestead Residents (Ka‘opua et al. 2017)

Project Summary Cultural safety is a strengths-based construct which aims to subvert unequal power relations, honor diverse ways of knowing in community-specific contexts, and acknowledge community as arbiter of ‘how’ safety is actualized. Published literature documents the benefits of culturally safe healthcare yet pays scant attention to culturally safe research praxis. Our team of practitionerresearchers sought to uncover meanings of cultural safety in community-based (continued)

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Research Box 3 (continued)

health research with Hawaiian Homestead residents. Focus groups were conducted in three communities. Emic descriptions of cultural safety and non-resident researchers were elicited. Content analysis revealed trust (hilina‘i) as the overarching theme fundamental to cultural safety. Cultural safety was demonstrated by practices that accommodate and engage community in their shared sense of place, history, ways of knowing, and capacitybuilding. Such practices likely mitigate perceptions of cultural imposition and promote relevant interventions developed with communities. Implications are enunciated in HILINA‘I, a mnemonic for advancing knowledge decolonization and health equity. Read the full article: https://journalhosting.ucalgary.ca/index.php/jisd/ article/view/58467 1. Which principles for cultural safety did the researchers address in their research? 2. How did the inclusion of these principles improve social inclusion? 3. Which principles for cultural safety were not addressed in the research? 4. How might the omission of these principles limit social inclusion? 5. What aspects of this work might you used in your future research and/or practice?

Research Box 4 Developing Inclusive Residential Care for Older Lesbian, Gay, Bisexual and Trans (LGBT) People: An Evaluation of the Care Home Challenge Action Research Project (Hafford-Letchfield et al. 2018)

Project Summary There have been substantial achievements in legislative and human rights for lesbian, gay, bisexual and transgender (LGBT) older people and their visibility in health and social care has equally increased. These appear to have surpassed the ability of care services to meet their needs given documented concerns about the accessibility, inclusiveness and safety of care services particularly institutionalized care. This requires systemic change not easy to operationalize. This paper describes an action research initiative where six care homes belonging to a national care provider, collaborated to assess and develop their services with the support of local LGBT “Community Advisors” and academic partners. Framed within change management framework and combined with a participatory leadership approach, a program of intervention was implemented comprising structured activities around seven (continued)

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Research Box 4 (continued)

key areas thought to promote LGBT inclusion. A formal evaluation was conducted involving 35 pre- and post-intervention qualitative interviews with 18 people (community advisors; care home managers and senior managers). The findings are presented across three key themes (1) starting points on the journey; (2) challenges encountered along the journey (organizational and interpersonal); and (3) making change happen; opportunities, initiatives and gains. The authors make recommendations on the value of a program approach for achieving tangible outcomes that demonstrate increased inclusion for older LGBT people living in long-term care settings. Read the full article: https://onlinelibrary.wiley.com/doi/pdf/10.1111/hsc. 12521?casa token¼0FG4lxO-N6IAAAAA:t1geLStGxzQV-rnkp1jbPKCZbn 6Icalqn XYfMHQjF3ttHepfD-zneI4sfDAqVaJjwYNmBDOpg EgFsyVA 1. Which principles for cultural safety did the researchers address in their research? 2. How did the inclusion of these principles improve social inclusion? 3. Which principles for cultural safety were not addressed in the research? 4. How might the omission of these principles limit social inclusion? 5. What aspects of this work might you used in your future research and/or practice?

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Conclusion and Future Directions

This chapter has provided readers with arguments for moving away from cultural competence and toward the development of culturally safe approaches to research and practice with diverse communities. By exploring the histories and definitions of different terminology, readers are more familiar with the strengths and limitations of cultural competency and the need for cultural safety in research and practice. In-depth examples and exploration of the Principles of Cultural Safety have been discussed and operationalized to demonstrate how to promote social inclusion using this intersectional model. The chapter highlights the need to go beyond the acquisition of competencies toward wholistic engagement with individuals, communities, and systems. Engaging in these concepts and practices helps to ensure that the social inclusion remains central to research and practice in ways that make the world a better and more equitable place for us all. This is in line with the words of the late American Poet, Maya Angelou, “Good done anywhere is good done everywhere. For a change, start by speaking to people rather than walking by them like they’re stones that don’t matter. As long as you’re breathing, it’s never too late to do some good.” The global COVID 19 pandemic reinforces how it is vitally important to adopt a culturally safe approach. Australia, like other jurisdictions across the globe, is

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witnessing an unequal distribution of the impacts and risks of COVID 19 (van Barneveld et al. 2020). The pandemic exacerbates existing inequalities in chronic diseases and the negative health outcomes associated with the social determinants of health (Bambra et al. 2020). Culturally safe approaches are crucial to reducing the mounting health inequalities accompanying the pandemic. Australia’s Aboriginal community controlled health sector used locally-responsive, culturally informed actions to protect Australia’s Aboriginal and Torres Strait Islander peoples from COVID 19 (Turner 2020). The global health crisis sheds light on the important role health professionals, academics, researchers, and activists can play as change agents, embedding cultural safety in their individual practice, and advocating for change in organizations and systems.

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de Vries, K. M. (2015). Transgender people of color at the center: Conceptualizing a new intersectional model. Ethnicities, 15(1), 3 27. Dune, T. M., McLeod, K., & Williams, R. (2021). Culture, diversity and health in Australia: Towards culturally safe health care. Routledge. Dutta, M. J. (2008). Communicating health: A culture centered approach. Polity Press. Eckermann, A. K., Dowd, T., Chong, E., Nixon, L., Gray, R., & Johnson, S. (2010). Binan Goonj: Bridging cultures in aboriginal health (3rd ed.). Churchill Livingstone. Eisenbruch, M. (2004). The lens of culture, the lens of health: Toward a framework and toolkit for cultural competence. Resource Document, for UNESCO Asia Pacific Regional Training Work shop on Cultural Mapping and Cultural Di versity Programming Lens to Safeguard Tangible and Intangible Cultural Expressions and Project Cultural Diversity, Bangkok, Furlong, M., & Wight, J. (2011). Promoting “critical awareness” and critiquing “cultural compe tence”: Towards disrupting received professional knowledges. Australian Social Work, 64(1), 38 54. Glass, N., Annan, S. L., Bhandari, T. B., & Fishwick, N. (2011). Nursing care of immigrant & rural abused women. In J. Humphreys & J. C. Campbell (Eds.), Family violence & nursing practice. Springer Publishing Company, LLC. Gray, M., & McPherson, K. (2005). Cultural safety and professional practice in occupational therapy: A New Zealand perspective. Australian Occupational Therapy Journal, 52(1), 34 42. Hafford Letchfield, T., Simpson, P., Willis, P. B., & Almack, K. (2018). Developing inclusive residential care for older lesbian, gay, bisexual and trans (LGBT) people: An evaluation of the Care Home Challenge action research project. Health & Social Care in the Community, 26(2), e312 e320. Hankivsky, O., Cormier, R., & De Merich, D. (2009). Intersectionality: Moving women’s health research and policy forward. Women’s Health Research Network Vancouver. Ka‘opua, L. S. I., Tamang, S., Dillard, A., & Kekauoha, B. P. (2017). Decolonizing knowledge development in health research cultural safety through the lens of Hawaiian Homestead residents. Journal of Indigenous Social Development, 5(2), 20 42. Kirmayer, L. J. (2012). Rethinking cultural competence. Transcultural Psychiatry, (2), 149 164. Kline, C. C., Godolphin, W. J., Chhina, G. S., & Towle, A. (2013). Community as teacher model: Health profession students learn cultural safety from an aboriginal community. Michigan Journal of Community Service Learning, 20(1), 5 17. McEldowney, R., & Connor, M. J. (2011). Cultural safety as an ethic of care: A praxiological process. Journal of Transcultural Nursing, 22(4), 342 349. https://doi.org/10.1177/ 1043659611414139. McKenzie, K. (2008). A historical perspective of cultural competence. Ethnicity and Inequalities in Health and Social Care. Mkandawire Valhmu, L. (2018). Cultural safety, healthcare and vulnerable populations: A critical theoretical perspective. Routledge. Moolchaem, P., Liamputtong, P., O’Halloran, P., & Muhamad, R. (2015). The lived experiences of transgender persons: A meta synthesis. Journal of Gay & Lesbian Social Services, 27, 143 171. Morin, A. (2011). Self awareness part 1: Definition, measures, effects, functions, and antecedents. Social Personality and Psychology Compass, 5(10), 807 823. National Health and Medical Research Council. (2014). Cultural Competency in health: A guide for policy, partnerships and participation. A. Government. Nursing Council of New Zealand. (2011). Guidelines for cultural safety, the Treaty of Waitangi and Maori health in nursing education and practice. https://www.nursingcouncil.org.nz/Public/ Nursing/Standards_and_guidelines/NCNZ/nursing section/Standards_and_guidelines_for_ nurses.aspx?hkey 9fc06ae7 a853 4d10 b5fe 992cd44ba3de Olson, R., Bidewell, J., Dune, T., & Lessey, N. (2016). Developing cultural competence through self reflection in interprofessional education in Australia. Journal of Interprofessional Care, 30(3), 347 354.

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Ramsden, I. (2002). Cultural safety and nursing education in Aotearoa and Te Waipounamu. Wellington: Victoria University. Richardson, F. (2012). Editorial: Cultural safety 20 years on time to celebrate or commiserate? Whitireia Nursing Journal, 19, 5 8. http://web.b.ebscohost.com.ezproxy.cdu.edu.au/ehost/ pdfviewer/pdfviewer?vid 1&sid 924c14d2 4370 4a11 8a0e a35740a7b924%40pdc v sessmgr01. Taylor, K., & Guerin, P. T. (2019). Health care and indigenous Australians: Cultural safety in practice (3rd ed.). Red Globe Press. https://books.google.com.au/books?id TqfKvQEACAAJ. Tseng, W. S., & Streltzer, J. (2015). Cultural competence in health care. Springer Science. Turner, P. (2020). ‘We have lost not one Elder’: NACCHO CEO Pat Turner reflects on Aboriginal community successes in COVID 19. https://www.croakey.org/we have lost not one elder naccho ceo pat turner reflects on aboriginal community successes in covid 19/ van Barneveld, K., Quinlan, M., Kriesler, P., et al. (2020). The COVID 19 pandemic: Lessons on building more equal and sustainable societies. The Economic and Labour Relations Review., 31(2), 133 157. https://doi.org/10.1177/1035304620927107. Vaughan, C., Murdolo, A., Murray, L., Davis, E., Chen, J., Block, K., Quiazon, R., & Warr, D. (2015). ASPIRE: A multi site community based participatory research project to increase understanding of the dynamics of violence against immigrant and refugee women in Australia. BMC Public Health, 15, n/a. Wepa, D. (Ed.). (2015). Cultural safety in Aotearoa New Zealand (2nd ed.). Cambridge University Press.

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The Capabilities Approach and Social Inclusion Christopher A. Riddle

Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Inclusion and Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Capabilities Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Arguments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Individual Capabilities as Assurances of Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Grounding Inclusion in Dignity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter focuses on the capabilities approach and social inclusion. The promoting of social inclusion is particularly important for any just institutional arrangement. If we acknowledge that social exclusion exists within at least four dimensions – economic, political, social, and cultural – it becomes apparent that health and disability present unique concerns for inclusion given both the social determinants of health and the multidimensional manner in which health and disability impact individuals. Feeling connected and a sense of belonging, as well as possessing rights and entitlements on par with other citizens, are starting points of a socially inclusive society that are often absent for those with poor health or a disability. This chapter demonstrates that not only is social inclusion a requirement of any adequate just institutional arrangement but that the capabilities approach is the best conception of justice to promote inclusion for those living with poor health or a disability. First, a general framework for contemporary theorizing about justice is put forth. It is highlighted how various seemingly distinct conceptions of justice place priority on a notion of inclusion. Second, the capabilities approach to justice is highlighted as a particularly successful C. A. Riddle (*) Utica College, Utica, NY, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_9

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conception at promoting inclusion and dignity. Third, the manner in which inclusion is promoted within the capabilities approach is examined. Prior to arriving at the grounding of inclusion within a conception of dignity, it is discussed how inclusion is often erroneously thought to be promoted within such a framework. Keywords

Inclusion · Health · Disability · Justice · Capabilities · Nussbaum · Sen

1

Introduction

The promoting of social inclusion is particularly important for any just institutional arrangement. If we acknowledge that social exclusion exists within at least four dimensions – economic, political, social, and cultural (Tacket et al. 2014) – it becomes apparent that health and disability present somewhat unique concerns for inclusion given both the social determinants of health (Riddle 2016) and the multidimensional manner in which health and disability impact individuals. Of particular concern for those living with poor health or a disability is the often tokenistic manner in which inclusion is promoted (Tacket et al. 2014). Feeling connected and a sense of belonging, as well as possessing rights and entitlements on par with other citizens, are foundational characteristics of a socially inclusive society that are often absent for those with poor health or a disability. In what follows, it is demonstrated that not only is social inclusion a requirement of any adequate just institutional arrangement but, moreover, that the capabilities approach to justice is the best conception of justice to promote inclusion for those living with poor health or a disability. First, a general framework for contemporary theorizing about justice is put forth. It is highlighted how various seemingly distinct conceptions of justice place priority on a notion of inclusion. Second, the capabilities approach to justice is highlighted as a particularly successful conception at promoting inclusion and dignity. Third, the manner in which inclusion is promoted within the capabilities approach is examined. Prior to arriving at the grounding of inclusion within a conception of dignity, it is discussed how inclusion is often erroneously thought to be promoted within such a framework. More specifically, it is suggested that social inclusion is considered foundational within the capabilities approach and thus, it is not regarded as an output from just institutional arrangements, but, instead, should be regarded as a prerequisite. It is this fact that makes the capabilities approach a particularly appealing conception of justice when exploring dignity and social inclusion.

2

Inclusion and Justice

The capabilities approach is not alone in placing value on social inclusion. Drastically different conceptions of justice emphasize the importance of inclusion. Albeit in differing ways, contemporary theories of justice acknowledge how social

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inclusion is an important institutional framework within the promotion of justice and equality. Even staunchly independent or libertarian conceptions of justice, such as the one put forth by Robert Nozick in Anarchy, State, and Utopia (1974), rely upon a conception of inclusion. Although not terribly robust in nature, Nozick suggests that the principle of self-ownership endorsed within his notion of justice is very inclusive (Brenkert 1998). Indeed, Nozick’s requirement of a minimal state, he argues, is compatible with social inclusion insofar as it would deem it to be impermissible to infringe upon any particular group and its pursuit of its unique vision of flourishing (Nozick 1974). In this minimal sense of inclusion, no one would be required to enact policies that were inclusive in nature, but instead, inclusion is promoted through the permitting of diverse perspectives and ways of life. Granted, this understanding of inclusion is perhaps rightly thought to be rather anemic in nature; it nonetheless serves to demonstrate how promoting inclusion (in whatever form it is conceptualized) is viewed as necessary within all conceptions of justice, even those often thought to be antithetical to such concerns. Conceptions of justice thought to be more compatible with a notion of inclusion – Rawlsian justice in particular and liberal conceptions more generally – consider the social basis of self-respect as not only a primary good, but, indeed, as “perhaps the most important primary good” (Rawls 1971, p. 440). The social basis of self-respect, according to the Rawlsian liberal framework, includes, among other things, “a person’s sense of his [sic] own value” (Rawls 1971, p. 440). Under a Rawlsian framework, Catriona McKinnon (2002, p. 75) suggests that: The conditions of reciprocal esteem are self replicating. A person whose self respect is supported by the esteem and admiration of others will, to put it crudely, be more likely to return the compliment than if she lacked such self respect, and this disposition on her part will indirectly work to her benefit by disposing others, in virtue of their self respect, to be more forthcoming with their praise.

For Rawls, the social basis of self-respect resembles social inclusion insofar as it involves the features of institutions necessary to permit people to perceive themselves as residing in a position in society that is respected as well as valued and valuable. Primary among these features are equal recognition of persons as co-citizens, including the equality of basic rights and liberties; fair equality of opportunities; and relative personal independence guaranteed through a reasonable allocation of the resources necessary to achieve the previous two states of affairs (Rawls 1971). Thus, under a conception of Rawlsian justice, the conditions necessary to foster the growth of self-respect and inclusion are not only important, but central or vital. Institutions must be designed in a manner so as to ensure and promote the social inclusion of those that they govern. Will Kymlicka (2002, p. 4) suggests that “each [liberal] theory is attempting to define the social, economic, and political conditions under which the members of the community are treated as equals.” Here, one can see an explicit acknowledgment of how equality relates to three of the four dimensions of inclusion. This aligns with another famous liberal egalitarian, Ronald Dworkin (1983), who suggests that the egalitarian thesis provides a plateau in political

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argument. He suggests that all interesting theorizing about justice revolved around the central thesis that the equality of persons was central to just institutional arrangements. Foundational to the egalitarian plateau is the equal treatment and opportunity of those being governed. Even prior to treating others as an equal as endorsed by Rawls however, the foundations of equality revolve around ensuring others are not treated as an inferior and, instead, are included (Sangiovanni 2017). Amartya Sen’s notion of substantial freedom echoes this sentiment. At first glance, Senian freedoms might be considered solely in terms of the equality of opportunity. This would be incorrect however. Substantial freedoms are robust and rich guarantees, designed to not only open one’s opportunity set but also to ensure development as “fuller social persons” (Sen 1999, p. 15). For Sen, substantial freedoms are essential for respect and dignity of persons not only because of the instrumental role they play in ensuring individuals have autonomy over the lives they lead but also because of the damaging impact of what he calls “unfreedoms” and the role they play in undermining an individual’s sense of self as well as their social inclusion. In other words, a limitation on the states of being individuals are open to pursue is damaging not only because of freedom considerations, but because it damages an individual’s social standing and sense within a broader society – it creates an inequality that is equally as personhood-affecting (affecting the moral standing of an individual) as it is person-affecting (affecting the well-being of an individual). Finally, Martha Nussbaum (2011) extends Sen’s capabilities approach and is far more explicit about the role that dignity and inclusion ought to play within a conception of justice. Nussbaum (2011, p. 31) writes that human dignity “is equal in all who are agents.” She suggests that the target of any adequate conception of justice is the assuring of rights so central that without them, a life is not worthy of human dignity (Nussbaum 2006). Thus, on this framework, social inclusion must be promoted as a partial means of promoting the dignity of persons. In short, Nussbaum is steadfast in her assertion of the primacy of inclusion in the promoting of dignity. Nussbaum (2008) suggests that dignity is, in fact, the only matter of justice that is not open to choice – people cannot be, for example, paid sufficiently to abandon an expectation of the conditions necessary for the assuring, maintenance, or preservation of dignity. Thus, the conditions necessary to ensure dignity or the self-respect of persons are institutional in nature and foundational requirements of justice. People who find themselves in a particularly vulnerable position with respect to the possibility of being socially devalued and disrespected or having affronts launched against their dignity are lacking the institutional framework necessary to promote social inclusion. Many people living in poor health or with a disability find themselves exposed to such risk.

3

The Capabilities Approach

The capabilities approach as discussed above briefly is a particularly desirable conception of justice that aims to promote social inclusion for everyone but that is particularly inclusive of those living in poor health and with a disability. Broadly

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conceived, the capabilities approach is an approach to justice that places value upon the central freedoms individuals are available to pursue. Aristotle (1999, p. 5) has observed that “clearly wealth is not the good we are seeking, since it is [merely] useful, [choiceworthy only] for some other end.” This is because, as Sen (1995) has argued, wealth, income, or resources are not things one values for their own sake. Individuals lacking availability to functionings or flourishing, even if possessing greater resources, are more disadvantaged than others who are privy to such functionings. One must shift from examining levels of private consumption to the overall capability an individual may have to live the kind of life one desires. According to Sen (1995), one must shift one’s attention from individual resource allocation to, instead, what people are able to do or be as a result of the resources they have freely available to utilize or convert into substantive opportunities. The capabilities approach focuses on, above all else, individuals’ capability to function, and it has two primary components. Briefly, “functionings” are things and/or activities that people have a choice between. These can be thought of alternatively as end states, or states of being that are valuable. A “capability,” on the other hand, is a set of functionings an individual has a choice over. More pointedly, the end state of a realized capability is a functioning. Therefore, the capability set an individual possesses represents the various states of being she has the freedom to pursue. Nussbaum (2006, p. 155) has suggested that “one way of thinking about the capabilities list is to think of it as embodied in a list of constitutional guarantees.” Under this framework, a capability set is the set of substantial freedoms available to genuinely and securely pursue. These guarantees require considerable social architecture to ensure, and mere black-letter law is insufficiently robust to ensure secure access to capabilities. In other words, the discussion of a broad set of substantive opportunities implies a wide array of social conditions be met to guarantee a genuine opportunity to secure the freedoms or opportunities in question. The capabilities approach acknowledges that “[t]here are various valuable functionings in life and [it], at least according to Nussbaum, is resolutely pluralistic about value” (Riddle 2014, p. 32). It is this pluralistic framework that aids in the promoting of social inclusion – it does not value particular modes of living over others and, instead, provides a substantive set of opportunities to ensure all can live as co-citizens, pursuing conceptions of flourishing that are met by others with respect. Not all theorists believe that capabilities are the correct target of one’s justicebased concerns however. Arneson (2006), for example, argues that health is a paradigm example of a functioning that ought to be secured, as the providing of merely a capability in this instance is insufficient. Riddle (2014, 2020) also suggests that because poor health and the presence of disability have the potential to lead to significant disadvantage, it is a different kind of injustice when individuals are permitted to remain in ill-health. Nonetheless, Nussbaum suggests that capabilities, and not functionings, are the proper target of one’s concern. On the question of what capabilities are central, there is equal opposition. How one specifies a list of central capabilities such that one’s thick conception of the good life is representative of the pluralistic desires and goals of those within a particular society (or across national boundaries) is no small task. John Kekes (2003), for

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example, is concerned with the freedom (or lack thereof) associated with the difficult task of specifying capabilities that are an accurate representation of everyone’s conception of the good life. His claim is that one is free to follow one’s conception of the good insofar as they choose the conception of the good that Nussbaum specifies. In fact, Kekes (2003) refers to Nussbaum’s capabilities approach as maternal tyranny. He expresses hesitancy in accepting Nussbaum’s ten capabilities and quips that Nussbaum’s list “contains exactly ten items, no doubt because the myths and stories from which the list is derived hit upon the essential connection between good lives and the decimal system” (Kekes 2003, p. 101). Kekes continues by expressing concern over the possibility of deciding democratically, what capabilities must be endorsed. While such a process may undoubtedly be a messy one, numerous thinkers have begun to think about how one might formulate a list of central capabilities through public debate and value construction (Alkire 2006) and through the fostering and developing of public discussion and deliberative democracy (Crooker 2006). In fact, Wolff and De-Shalit (2007) conducted a series of interviews in both England and Israel that, while not statistically significant, suggested that there are capabilities that should both be added as a matter of consensus and receive greater weight when assessing an individual’s wellbeing. In agreement with the above criticisms, when conceptualizing the approach, Sen (2004) himself refuses to articulate precisely what ought to be included within the capabilities approach and instead has suggested that providing a list denies the relevance of the values people have come to hold and the value of democracy in arriving at these values. That said, none of this reluctance or criticism has prevented Nussbaum from attempting to articulate the capabilities that are central to human flourishing. The central capabilities as articulated by Nussbaum are the following: 1. Life. Being able to live to the end of a human life of normal length; not dying prematurely, or before one’s life is so reduced as to be not worth living. 2. Bodily Health. Being able to have good health, including reproductive health; to be adequately nourished; to have adequate shelter. 3. Bodily Integrity. Being able to move freely from place to place; to be secure against violent assault, including sexual assault and domestic violence; having opportunities for sexual satisfaction and for choice in matters of reproduction. 4. Senses, Imagination, and Thought. Being able to use the senses, to imagine, think, and reason—and to do these things in a “truly human” way, a way informed and cultivated by an adequate education, including, but by no means limited to, literacy and basic mathematical and scientific training. Being able to use imagination and thought in connection with experiencing and producing works and events of one’s own choice, religious, literary, musical, and so forth. Being able to use one’s mind in ways protected by guarantees of freedom of expression with respect to both political and artistic speech, and freedom of religious exercise. Being able to have pleasurable experiences and to avoid nonbeneficial pain.

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5. Emotions. Being able to have attachments to things and people outside ourselves; to love those who love and care for us, to grieve at their absence; in general, to love, to grieve, to experience longing, gratitude, and justified anger. Not having one’s emotional development blighted by fear and anxiety. (Supporting this capability means supporting forms of human association that can be shown to be crucial in their development.) 6. Practical Reason. Being able to form a conception of the good and to engage in critical reflection about the planning of one’s life. (This entails protection for the liberty of conscience and religious observance.) 7. Affiliation. (a) Being able to live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another. (Protecting this capability means protecting institutions that constitute and nourish such forms of affiliation, and also protecting the freedom of assembly and political speech.) (b) Having the social bases of self-respect and nonhumiliation; being able to be treated as a dignified being whose worth is equal to that of others. This entails provisions of nondiscrimination on the basis of race, sex, sexual orientation, ethnicity, caste, religion, national origin. 8. Other Species. Being able to live with concern for and in relation to animals, plants, and the world of nature. 9. Play. Being able to laugh, to play, to enjoy recreational activities. 10. Control over One’s Environment. (a) Political. Being able to participate effectively in political choices that govern one’s life; having the right of political participation, protections of free speech and association. (b) Material. Being able to hold property (both land and movable goods), and having property rights on an equal basis with others; having the right to seek employment on an equal basis with others; having the freedom from unwarranted search and seizure. In work, being able to work as a human being, exercising practical reason and entering into meaningful relationships of mutual recognition with other workers. (Nussbaum 2006, p. 76-78) These capabilities are what one might refer to as complex capabilities, often including many nested components within one stated goal. To view Nussbaum’s approach as consisting of merely ten central capabilities would be incorrect. The capabilities are organized around thematic freedoms or functionings, designed to ensure a robust opportunity to flourish in each interrelated realm. Take, for example, the final capability: Control over One’s Environment. Nussbaum herself breaks this capability into two components, the first involving political participation and the ability to shape the political environment one finds oneself in. Second, Nussbaum defends a set of controls involving one’s material life, such as property rights broadly construed, employment rights, and various legal protections against unwarranted search and seizure. This capability, as shown, while broken into two distinct components, has even more nested components within each category. Furthermore,

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the capability of Bodily Integrity, for example, includes both negative freedoms, like being free from violent or sexual assault, and positive freedoms, such as having choices in matters of reproduction. Finally, it is important to recognize that these capabilities are not meant to be discrete entities. Instead, they often overlap, with some freedoms or end states being assured through one or more capabilities. Thus, the capabilities being assured, while seemingly a simple list of ten central freedoms, are actually remarkably complex and robust and often involve a complex interplay of many different freedoms at any given time. It is precisely because of this relationship that Nussbaum (2006) claims that a failure to secure even one capability is a failure of basic justice, no matter how high performing on any of the others. That said, Kekes’ somewhat cheeky criticism of Nussbaum for specifying exactly ten capabilities falls somewhat flat upon further inspection.

4

The Arguments

4.1

Individual Capabilities as Assurances of Inclusion

Given the abovementioned criticisms of the central capabilities as articulated by Nussbaum and with a fuller understanding of just how complex her central capabilities are, it might be tempting to scan them for evidence of aspects of justice designed to promote social inclusion. After all, if one is aiming to promote social inclusion and a conception of justice articulates essential opportunities individuals must have made freely available to them in order for that institutional arrangement to be deemed minimally just, surely whether inclusion is promoted or assured can be found in the list of various freedoms made available to citizens. For example, looking to the seventh capability of “affiliation,” and Nussbaum’s second component within that capability, might provide one with reason to believe that the notion of social inclusion, and all that it implies, can be guaranteed within it. It states that individuals should have “the social bases of self-respect and nonhumiliation; being able to be treated as a dignified being whose worth is equal to that of others. This entails provisions of nondiscrimination on the basis of race, sex, sexual orientation, ethnicity, caste, religion, national origin” (Nussbaum 2006, p. 77). Perhaps instead of Nussbaum’s second conception of “affiliation,” her first conception is deemed sufficient to promote social inclusion. She states that one should be suitably free to “live with and toward others, to recognize and show concern for other human beings, to engage in various forms of social interaction; to be able to imagine the situation of another” (Nussbaum 2006, p. 77). Such an understanding of the central requirements of justice surely goes far to stress the importance of inclusion within social interaction and affiliation. Even Nussbaum’s capability of “senses, imagination, and thought” has components that seem to point to a valuing of social inclusion. She states that everyone ought to be free to “use imagination and thought in connection with experiencing

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and producing works and events of one’s own choice, religious, literary, musical, and so forth” (Nussbaum 2006, p. 76). This seems to suggest an inclusive society, irrespective of one’s tastes, beliefs, or affiliations. Mining the central capabilities for evidence of a suitably robust guarantee or assurance of social inclusion is fruitless however, and this temptation ought to be resisted. A sufficiently complex notion such as social inclusion should not be regarded as an end point or functioning to be assured through a capability. Instead, social inclusion is not an end to be achieved after a successful articulation of a conception of justice. If one imagines social inclusion as a goal to be promoted through just institutional arrangements and as a capability or functioning, one misinterprets the role of capabilities while simultaneously misunderstanding what social inclusion demands. One might be tempted to think a capability is sufficiently robust to promote inclusion and to avoid exclusion on the basis of poor health or disability, but it is a misconception.

4.2

Grounding Inclusion in Dignity

Instead, social inclusion should be properly regarded as a starting point of justice and not something to be assured after one has guaranteed just institutional arrangements. Properly understood, social inclusion is an input necessary to ensure the institutions that one values are just. Social inclusion is not a result of just arrangements; it is a requirement for them. This is precisely where the capabilities approach shines in the promoting of an inclusive society. As stressed by Nussbaum, dignity and inclusion are prerequisites for other capabilities. Without the conditions necessary to promote dignity and social inclusion, all the capabilities she specifies are bound to be insecure. In this sense, inclusion is not something to be assured by a capability, but instead, is a foundational requirement to ensure any capabilities are free to be secured. It is Nussbaum’s (2008) assertion that one, irrespective of one’s abilities, should have access to the central capabilities that grounds her conception of justice in inclusion and the promoting of dignity. By putting primacy on dignity and social inclusion, Nussbaum can expand outward into more particular functionings when articulating her central capabilities. Given a foundation to work from, dignity and social inclusion, two remarkably complex and difficult things to assure, are guaranteed, and the capabilities can move to more secondary considerations. At the outset, the notion of exclusion was put forth as consisting of at least four dimensions: economic, political, social, and cultural. If this is true, then it is perhaps obvious that many, if not all, of the capabilities have the potential to impact one or more of these dimensions. That said, the economic, political, social, and cultural manners in which exclusion can occur are addressed at the outset and are part of the foundational conditions of the capabilities approach. Certainly, justice requires other economic, political, social, and cultural freedoms that are not tied to social inclusion or exclusion, but the components of each dimension that are required to maintain dignity, the social basis of self-respect, or inclusion more specifically, are foundational guarantees

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and are inputs into any just institutional arrangement and not outputs. It is because of this that one would be in error to highlight any one of the capabilities as being more or less constitutive of promoting social inclusion. Instead, when properly regarded, the capabilities approach treats social inclusion as a given in any just institutional framework and works on matters of justice beyond the minimal dignity granted when people are included.

5

Conclusion and Future Directions

This chapter sought to do at least four things. First, it specified how social inclusion was a relevant component for many or all contemporary theories of justice. It did this by examining, in a cursory manner of course, conceptions of justice that have been viewed to be influential in the formulation of viable theories of justice discussed today. It suggested that while varying in terms of importance, social inclusion made appearances in all theories of justice, despite some conceptions being remarkably individualistic in nature. Even these conceptions of justice thought it to be important to permit some guarantees around social inclusion. Second, it discussed the capabilities approach and explored both its foundations and its dominant articulation put forth by Nussbaum. It presented Nussbaum’s capabilities approach as a conception of justice that promoted dignity and social inclusion. Third, however, it suggested that one would be in error to look to particular capabilities to provide evidence of guarantees of social inclusion. While some capabilities have nested components within them that would strengthen the demands for the promotion of dignity and social inclusion, none, it was suggested, are designed explicitly as such. Instead, fourth, it was argued that the very foundations of the capabilities approach are designed to promote social inclusion. It was suggested that this approach to justice viewed social inclusion as a necessary input into just institutional arrangements and not an output to be guaranteed after a set of robust capabilities or opportunities were provided. In other words, social inclusion and dignity are not things individuals should be free to pursue and make choices around. Social inclusion, instead, ought to be rightly regarded as a necessary component of any adequate conception of justice. The capabilities approach places inclusion as foundational. Given the aging population and increased disparity in wealth and other social considerations affecting the pursuit of flourishing, exclusion is bound to only become more problematic. By viewing inclusion as foundation to any just institutional order, rather than as a product that emerges from just circumstances, systems can be designed from the ground up to reflect values of inclusion and dignity. Procedurally, acknowledging that the conditions necessary for inclusion are not an afterthought, to be negotiated or arrived at through a series of compromises or adjustments to existing structures, inclusion becomes the framework for social institutions and involves not only the basis for self-respect and dignity in society, but for more robust freedoms and opportunities. The capabilities approach provides policy-makers with an aspirational vision. Instead of aiming to create social institutions that promote inclusion or respect, inclusion is viewed as foundational, and

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policies are designed to move beyond mere inclusion, to, instead, far more nuanced and developed rights and freedoms. When inclusion is addressed or promoted at the outset, conceptions of justice become free to expand their scope and to advocate for further rights for individuals. The foundation of inclusion and the social basis of selfrespect provides policy-makers and institutions with a minimal conception of justice to work from. It is only when one views inclusion as foundational, as the capabilities approach does, that individuals are afforded the respect one owes them as a matter of justice. When one regards inclusion as a prerequisite for any other valuable doing or being within a conception of justice, one’s institutions are far more likely to provide substantive and substantial rights designed to permit individuals the freedom to flourish.

References Alkire, S. (2006). Public debate and value construction in Sen’s approach. In A. Kaufman (Ed.), Capabilities equality: Basic issues and problems (pp. 133 154). New York: Routledge. Aristotle. (1999). Nicomachean ethics (Second; T. Irwin, Ed.). Cambridge: Hacket. Arneson, R. (2006). Distributive justice and basic capability equality: “Good enough” is not good enough. In A. Kaufman (Ed.), Capabilities equality: Basic issues and problems (pp. 17 43). New York: Routledge. Brenkert, G. G. (1998). Self ownership, freedom, and Autonomy. The Journal of Ethics, 2, 27 55. Crooker, D. A. (2006). Public debate and value construction in Sen’s approach. In A. Kaufman (Ed.), Capabilities equality: Basic issues and problems (pp. 155 197). New York: Routledge. Dworkin, R. (1983). Comment on Narveson: In defense of equality. Social Philosophy & Policy, 1(1), 24 40. Kekes, J. (2003). The illusions of egalitarianism. Ithaca: Cornell University Press. Kymlicka, W. (2002). Contemporary political philosophy. Oxford: Oxford University Press. McKinnon, C. (2002). Liberalism and the defence of political constructivism. New York: Palgrave Macmillan. Nozick, R. (1974). Anarchy, state, and Utopia. New York: Basic Books. Nussbaum, M. C. (2006). Frontiers of justice: Disability, nationality, species membership. Cam bridge: The Belknap Press of Harvard University Press. Nussbaum, M. C. (2008). Human dignity and political entitlements. In E. D. Pellegrino, F. E. Bloom, B. S. Carson, R. S. Dresser, N. N. Eberstadt, D. W. Foster, et al. (Eds.), Human dignity and bioethics: Essays commissioned by the President’s Council on Bioethics (pp. 351 380). Washington, DC: The President’s Council on Bioethics. Nussbaum, M. C. (2011). Creating capabilities: The human development approach. Cambridge: The Belknap Press of Harvard University Press. Rawls, J. (1971). A theory of justice. Cambridge: Harvard University Press. Riddle, C. A. (2014). Disability and justice: The capabilities approach in practice. Lanham: Lexington Books/Rowman & Littlefield. Riddle, C. A. (2016). Human rights, disability, and capabilities. New York: Palgrave Macmillan. Riddle, C. A. (2020). Disability and disadvantage in the capabilities approach. In A. Cureton & D. Wasserman (Eds.), The Oxford handbook of philosophy and disability (pp. 229 224). New York: Oxford University Press. Sangiovanni, A. (2017). Humanity without dignity: Moral equality, respect, and human rights. Cambridge: Harvard University Press. Sen, A. (1995). Equality of what? In S. Darwall (Ed.), Equal freedom: Selected Tanner lectures on human values (pp. 307 330). Ann Arbor: University of Michigan Press. Sen, A. (1999). Development as freedom. New York: Oxford University Press.

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Sen, A. (2004). Capabilities, lists, and public reason: Continuing the conversation. Feminist Economics, 10(3), 77 80. Tacket, A., Crisp, B. R., Graham, M., Hanna, L., Goldingay, S., & WIlson, L. (2014). Practicing social inclusion. London: Routledge. Wolff, J., & De Shalit, A. (2007). Disadvantage. Oxford: Oxford University Press.

Understanding and Advancing Occupational Justice and Social Inclusion

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Gail E. Whiteford, Tracey Parnell, Lily Ramsden, Melissa Nott, and Suzanne Vine-Daher

Contents 1 Occupational Justice: An Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Defining Occupational Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Rights, Empowerment, and Enablement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 Advancing Occupational Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Occupational Injustice: Definitions and Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Occupational Alienation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Occupational Deprivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Occupational Marginalization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Occupational Imbalance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 Occupational Displacement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6 Occupational Apartheid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Contextual Examples of Occupational Injustice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 People in Correctional Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 People Seeking Refugee or Asylum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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G. E. Whiteford (*) MNCLHD, NSW Health & School of Community Health, Charles Sturt University, Port Macquarie, NSW, Australia Whiteford Consulting, Lake Macquarie, Australia e mail: [email protected] T. Parnell · M. Nott Occupational Therapy, School of Community Health, Charles Sturt University, Albury, NSW, Australia e mail: [email protected]; [email protected] L. Ramsden School of Community Health, Charles Sturt University, Albury, NSW, Australia e mail: [email protected] S. Vine Daher School of Nursing and Allied Health, Bethlehem University, Rue des Freres, Palestine e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_10

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3.3 People in Residential Aged Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 People in Mental Health and Forensic Mental Health Facilities . . . . . . . . . . . . . . . . . . . . . 3.5 People in Health and Rehabilitation Settings and Risk Aversion . . . . . . . . . . . . . . . . . . . . 4 Advancing Occupational Justice: Using the Participatory Occupational Justice Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Critical Epistemological Foundations of the POJF . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Occupational justice emerged in the discursive terrain of occupational therapy and occupational science over two decades ago. Occupational justice differs from social justice in its orientation toward a recognition of differences in levels of capabilities between individuals and groups which enable or constrain occupational participation. Recognizing such difference, therefore, predicates the need to mobilize different types of resources to support participation and, inter alia, social inclusion. There are three main sections to this chapter. First, the chapter defines and presents a discussion of occupational justice and tracks its development over time as a significant discourse with salience across disciplines. Second, it defines and discusses occupational injustice with a focus on occupational deprivation as a prevalent, often institutionally linked, phenomenon and highlights some lived experiences of thisthrough the presentation of narrative data from a study undertaken by the authors. Finally, it focuses on how occupational justice can be advanced and the ends of social inclusion achieved, through presenting the Participatory Occupational Justice Framework. In all sections, mini case stories – in text boxes, highlighting the application of the concepts through lived experiential accounts – are included to enhance practitioner utilization across diverse contexts. Keywords

Occupational justice · Occupational injustices · Social inclusion · Participatory Occupational Justice Framework (POJF)

1

Occupational Justice: An Introduction

Occupational justice is founded on the belief that humans are occupational beings who develop and gain meaning through doing, and that engaging in occupation is essential for health and well-being (Wilcock and Townsend 2000). Advocates of occupational justice promote participation and equity in relation to occupational choice, to enable well-being, social inclusion, and participatory citizenship (Whiteford and Townsend 2011; Wilcock and Hocking 2015). In this context, occupations are defined as everyday activities that are as follows: meaningful and purposeful; that people want, need, or feel expected to do; and that people can do, based on their capacities, their personal and situational circumstances (Stadnyk et al. 2010, p. 331). Occupational justice theorists argue that individuals have a unique set of occupational capacities, needs, and routines within the context of their

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environment and that individuals have the right to exercise their capacities to promote and sustain their health and quality of life (Stadnyk et al. 2010). Occupational justice, as an international discourse, has helped to foreground situations of injustice experienced by individuals and communities with regard to occupational choice, participation, and engagement (Durocher et al. 2014). The emergence of occupational justice can be traced back to the 1990s (Gupta 2016; Kinsella and DuRocher 2016), initially combining the ideas of two occupational therapy and occupational science scholars, Australian Ann Wilcock and Canadian Elizabeth Townsend. Wilcock (1993) focused on humans as occupational beings and the importance of occupation to human existence. Advocating the necessity of occupation for human health and well-being, Wilcock proposed an occupational perspective of justice to support a “vision of an occupationally-just world supported by public health and societal initiatives” (Nilsson and Townsend 2010, p. 57). Complementary to Wilcock’s theories, Townsend proposed an expanded vision of professional practice consistent with the United Nation’s Universal Declaration of Human Rights (UN 1948). Townsend advocated for “practice with an ethical, moral, and civic commitment to enable the empowerment and social inclusion of persons, individually and collectively, in the everyday occupations of societies” (Nilsson and Townsend 2010, p. 57). Through the confluence of their intersecting areas of enquiry and research, Wilcock and Townsend promulgated the concept of occupational justice and invited further exploration, discussion, and development by occupational therapists, occupational scientists, and scholars from other disciplines. To this end, they conducted a series of workshops and presentations in various international locations between 1999 and 2006 to generate the “critique of ideas, beliefs, and principles related to occupational justice” (Stadnyk et al. 2010, p. 334). These workshops provided the opportunity for Wilcock and Townsend to continue their collaborative exploration of occupational justice and to encourage others to share in this exploration and conceptual development (Wilcock and Townsend 2000). While the origins of occupational justice are largely founded in occupational therapy and occupational science, further development and understanding of the concept has been enhanced and extended through contributions from scholars in other disciplines including sociology, urban planning, social work, and nursing (Stadnyk et al. 2010; Townsend and Wilcock 2004a). More recently, the concept of occupational justice has been applied and explored in contexts such as residential aged care (Du Toit et al. 2019a, b), criminology (Jaegers et al. 2020), human trafficking (George and Stanley 2019), and climate change (Drolet et al. 2020).

1.1

Defining Occupational Justice

Early in its development, Wilcock and Townsend (2000, p. 85) suggested that occupational justice could be described as “. . .equitable opportunity and resources to enable people’s engagement in meaningful occupations.” Since that time, the definition of occupational justice has continued to evolve and become more nuanced. In more recent publications, occupational justice has been defined as having access to equitable opportunities and resources “to do, be, belong and become what people have the

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potential to be and the absence of avoidable harm” (Wilcock and Hocking 2015, p. 414). Similarly, Whiteford and Townsend (2011, p. 65) outlined that occupational justice describes “a vision of society in which all populations have the opportunities, resources, privilege, and rights to participate to their potential in their desired occupations.” Wicks (2012, p. 170) also contributed to the conceptual definition of occupational justice by highlighting that the right to occupational choice and engagement relates not only to health and well-being but also to “a sense of self, purpose and accomplishment.” Implicit in understanding occupational justice is the notion that the occupational capacities and meanings valued by societies vary and that authentic occupational equity and empowerment require respect for diversity (Wilcock and Townsend 2000). Hocking (2017, p. 29) concisely described occupational justice as “. . .a powerful idea, bridging the gap between people’s well-being and harmful social conditions that restrict what they can do and be.” As is evident, a single, concise definition of occupational justice appears to be elusive. Indeed, in 2015, Whalley Hammell suggested that no clear definition of occupational justice exists in the literature while Bailliard et al. (2020) suggested that a lack of clarity exists around what occupational justice is in contrast to what occupational justice aims to achieve. Despite the lack of an unambiguous definition of occupational justice, existing definitions of occupational justice appear to be aligned in their focus on: social inclusion and acknowledgment of diversity; a commitment to reducing marginalization, disadvantage, and oppression; promotion of equity to facilitate control and choice over the occupations engaged in; and a vision of hope and possibility. Occupational justice is underpinned by three fundamental concepts – occupation, enablement, and justice (Whiteford and Townsend 2011) – and is further predicated on the following principles: that humans are occupational beings and occupational engagement is a determinant of health (Wilcock and Hocking 2015); that occupation is contextually embedded (Stadnyk et al. 2010); and that occupational engagement can advance the lives of those in vulnerable situations (Whiteford and Hocking 2011).

1.2

Rights, Empowerment, and Enablement

Occupational justice is present when people have the right to participate, feel empowered, and are engaged in meaningful occupation (Paul-Ward 2009; Townsend and Wilcock 2004b). It is enabled through the development of collaborative partnerships that facilitate empowerment and foster transformative change and participatory citizenship (Whiteford and Townsend 2011; Yanez and Zuniga 2018). Occupational justice extends beyond enabling individual well-being to enabling more equitable opportunity, resources, privilege, and occupational rights for groups, communities, and populations (Whiteford and Townsend 2011, p. 69). Occupational rights have been acknowledged as being fundamental to the advancement of occupational justice (Bulk 2020) and for this reason have been the focus of a charter developed by the World Federation of Occupational Therapists in 2014 (while a full description of this charter is not possible given space limitations here, readers are encouraged to visit the website at www.wfot.org).

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Perspectives of empowerment in social and occupational justice seek to increase the personal, interpersonal, and political power of oppressed and marginalized populations for individual and collective transformation (Lee 2001). As exemplified in Washington’s (2020) school-based educational program for pregnant and parenting students, implementation of a culturally relevant and responsive program, within an occupational justice framework, empowered parenting students to achieve their academic and personal goals. Scholars from the discipline of social work have advanced perspectives of empowerment, feminism, and a strengths perspective, bringing to the discourse on occupational and social justice a focus on advocacy, collaboration, connectedness, and mutuality (Turner and Maschi 2014). Achieving occupational justice is highly dependent on local and global distributions of power. Agner (2017) expanded on the concept of empowerment through the lens of occupational justice to preference psychological and material theories of empowerment from community psychology. Agner concluded that occupational justice can be bolstered by interventions informed by empowerment theory, which emphasize critical awareness, perceived control, citizen participation, and reduction in material barriers to power. While occupational justice and social justice are similar, in that they may both be considered joint aspirations toward an inclusive world (Jakobsen 2004), they also differ in orientation. Occupational justice is distinct from the general notion of social justice (Hocking 2012) in that it focuses on individuals’ or communities’ ability to achieve meaningful action, which is contingent upon their unique needs, preferences, skills, and abilities in interplay with the environment in which they live (Galvin et al. 2011). A fuller discussion of social justice, and the ways in which distributive and restorative justice differs from occupational justice, is not possible here; however, key concepts are presented and contrasted within Table 1 (Whiteford and Townsend 2011). Similar to processes inherent in the achievement of socially just outcomes, enabling occupational justice requires essentially collaborative, enabling approaches with families, communities, and populations aimed at fostering participatory citizenship and transformative change (Whiteford and Townsend 2011). This collectivist orientation to occupational well-being, espoused by anthropologist Gelya Frank (2007), situates occupation as a vehicle to support collective well-being and sovereignty. An example of these concepts are clearly articulated in McNeill’s (2016) exploration of Māori communities who have been disenfranchised by colonization. The interrelated issues of occupational justice, indigenous rights, and well-being are viewed through multiple lenses including those of traditional knowledge(s), occupational justice, and social justice in advocating empowerment, participation, and meaningful connection.

1.3

Advancing Occupational Justice

Townsend and Wilcock (2004a, p. 80) acknowledged that occupational justice is based on a “Western view of individual autonomy,” which is traditionally linked to independence and the freedom to make rational choices based on having the

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Table 1 Comparison of concepts of justice

Concerns

Social justice Procedural Processes of dispute resolution

Distributive Having or acquisition

Restorative Repair or renewal

Contested terrain

Equality of voice, unequal human and fiscal resources

Measurement and comparison of assets and deficiencies of social groups

Credibility of perpetrators and victims, measurement of damage and fair compensation of goods or rights

Aims

Equal voice and procedural rights

Equal rights to and equal responsibility for goods, services, and privileges

Restoration of perpetrators, restitution to victims

Issues of power

Individual defendants and prosecutors to be heard without bias

All social groups to have equal advantages to enable participation in daily life

Individual defendants to be exonerated, individual or class victims to be compensated

Actions for justice

Equal procedural processes

Equal distribution or allocation

Confessions of guilt, compensation to victims

Occupational justice Participatory Meaningful engagement in valued, chosen, obligatory occupations Occupational classification: social versus economic value of occupations, competing needs for opportunities and resources Enablement of different opportunities and resources to enable full citizen participation by all individuals, families, and social groups Different opportunities and resources to enable full citizen participation by all individuals, families, and social groups Recognition and enablement of difference as a basis for social inclusion

Adapted from Whiteford and Townsend (2011)

competency and relevant knowledge to do so. In recent times, the expansion of understandings, relevance, and applicability of occupational justice beyond Western and Anglophone ways of knowing, doing, and being has been encouraged. The inclusion of diverse perspectives of occupational justice, developed through authentic dialogue that contests the existing hegemonic constructions of knowledge, is increasingly evident in recent publications (see Magalhaes et al. 2019; RivasQuarneti et al. 2018). Although presented by some authors (see Whiteford and Townsend 2011) as a population issue as a result of problems with social systems, a review by Gupta (2016) highlighted that occupational justice is frequently presented from the perspective of individual experiences of injustices. Gupta (2016) suggested that a

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macrolevel perspective of occupational justice is necessary to enhance broader relevance of the concept. Advancing the international discourse on occupational justice requires consideration of multiple cultural contexts that shape conceptions of autonomy and how these in turn may affect how individuals make choices. In the field of bioethics, for example, relational autonomy is proposed as a useful alternative to the neoliberal versions of autonomy that focus on the independent, decontextualized agent. It instead considers individuals within their complex social, political, and historical contexts, recognizing that autonomy is both defined and pursued in a social context that significantly influences the opportunities an individual has to develop or express autonomous behavior (Mackenzie and Stoljar 2000; McLeod and Sherwin 2000). Taking a relational approach to autonomy involves considering the impact of social and political structures and how an individual’s social location affects his or her capability to exercise autonomy. The concept of relational autonomy may fit well and make significant contributions to the evolution, uptake, and implementation of the principles, policies, and practices of occupational justice (Durocher et al. 2013). While in an ideal world occupational justice enjoys greater uptake and implementation, there are numerous structural impediments to the achievement of such a utopian vision. Indeed, there needs to be a continuous interrogation of discourses which privilege some and disadvantage others and become calcified in structural inequalities. Achieving an occupationally just society requires attention to breaches of occupational rights wherever they occur and considered action(s) to militate against such breaches through advancing authentic justice and inclusiveness (Hocking 2017). Contraventions of occupational justice occur when individuals, groups, or populations are restricted in their ability to fully realize their occupational rights and to achieve occupational potential (Laliberte Rudman and Huoat 2013). These breaches of occupational justice result in occupational injustice. Occupational injustice highlights situations in which individuals, groups, and/or communities are restricted in their participation and engagement in occupations of meaning and necessity. In these instances, “participation in health enhancing occupations is inequitable across different groups in society, with some people unfairly benefiting and others subjected to patterns of occupation that are detrimental to health and well-being” (Hocking 2017, p. 33). In the following section, the concept of occupational injustice is explored and examples of occupational injustice are presented and discussed.

Box 1 Identity, Representation, and Participation: The Listening to Voices Project as Occupational Justice in Action

WHY: Need for the Project People with mental health issues continue to experience the negative impact of stigma and misunderstanding and, as a result of this, social exclusion. They also encounter everyday challenges in representing their identities through platforms where they have an authentic agency. Set against this background, and limited community understandings of mental ill-health, the Listening to (continued)

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Box 1 (continued)

Voices project was initiated in regional Victoria, Australia, in 2016. To enhance the representation and inclusion of people with lived experience of mental health issues, in 2019, the Listening to Voices team embarked on an ambitious project to develop an education resource. In developing the resource, the team sought to facilitate deep and authentic learning that would encourage health and human service students (and others engaging with the materials) to look beyond the diagnosis and to see the person first. In addition to facilitating knowledge and skill development to enable students to work collaboratively with individuals, the team also wanted students to: deeply consider the lived experience of challenges to mental health; begin to challenge their attitudes regarding mental health and mental ill-health; and, importantly, engage in critical conversations about how the existing mental health system contributed (or not) to social inclusion and meaningful participation. WHAT: Program Design and Resources The Listening to Voices project aims to engage and empower people who have experienced mental health issues and accessed the mental health system and position them as experts in this arena. More specifically, the coproduction of the teaching and learning resource has provided the opportunity for the people with lived experience to be the devisers, performers, educators, and experts of the material that is used to educate others. Their stories and their voices are at the heart of others’ learning. The coproduced online education resource includes four short films. Each film shares the journey of one of the experts by experience, and all four films address the topics of background trauma: being in the mental health system; the stigma of a diagnosis; and the hope of living a fulfilled life. A complementary handbook, collaboratively compiled by the team, is also provided for educators. HOW: Processes and Insights The coproduction of the learning resource involved people with experience of accessing mental health services, health workers, creative artists, and academics and was grounded in a genuine person-centered approach to reducing stigma and increasing understanding, empathy, and capacity regarding mental health and mental ill-health. The process involved extensive consultation, filming Listening to Voices live theatre performances, filming interviews with the performers and audience members, and intensive team workshops to identify and agree on common themes and issues to present in the learning resource. The success of the coproduction process was the result of a mutually agreed purpose, respectful collaboration, understanding of the role and expertise of each team member, and a willingness to engage in the creative process. SO WHAT: Impacts and Transformations Through the process of storytelling and performance, the experts by experience – Ben, Jain, Sarah, and Kelly – explore and intentionally share content (continued)

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Box 1 (continued)

from their own lives. They have chosen to tell their stories to provide a voice for prevention, hope, and recovery. Kelly talks about the importance and meaning of her involvement in the project and in the development of the resource: Kelly Why aren’t we creating hope? It shouldn’t be luck that you get to recover. It’s a human right. I am an advocate for people who are still within the mental health system. The advocacy aspect is really important to me because I know when I was in that vulnerable space that I couldn’t say ‘Hey, you can’t talk to me like that’ or ‘You shouldn’t treat me like that, that’s not okay.’ I wasn’t able to say that, and I know that people are still in that space. So, if I can do that for other people, that’s just pretty cool. In Listening to Voices I stand up and share a lot of personal stuff that I don’t always enjoy doing but I think it is really important to be able to start conversations, to let people know that it’s okay to have really tough conversations with people. And that they are not alone.

Engagement with the resource provides opportunity not only for education but also for challenging the ideas that feed fear and stigma related to mental health experiences and that contribute to issues of injustice. Through engagement with the Listening to Voices material, people have the opportunity to: develop respect for the lived experience of mental health issues; understand the issues people face in navigating the mental health system; and, finally, explore power structures and discrimination, and build their capacity to advocate for a more just system. People who engage with the work hear from the experiential experts and are encouraged to engage in critical dialogue regarding mental health and mental ill-health. Producing the resource involved a paradigm shift toward occupational justice – that is, an unambiguous focus on the rights of all people to be included in society through meaningful participation, grounded in their chosen identity. The shift positioned consumers as experts and foregrounded consumer perspectives and lived experience as a strategy to educate, advocate, and to bring about change in societal attitudes. This shift is pivotal to codesigned mental health services which foreground a justice of inclusion. For more information about the Listening to Voices project, go to https:// listeningtovoices.org.au/.

2

Occupational Injustice: Definitions and Examples

In the previous section, the genesis of occupational justice and its key concepts, as well as processes inter alia, were discussed. In this section, a more in-depth discussion is presented as to what scenarios of occupational injustice are and how they are understood. Townsend and Wilcock (2004b, p. 251) initially defined occupational injustice as “socially structured, socially formed conditions that give rise to stressful

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occupational experiences.” Nilsson and Townsend (2010, p. 58) further expanded this definition of occupational injustice as “an outcome of social policies and other forms of governance that structure how power is exerted to restrict participation in the everyday occupations of populations and individuals.” Throughout the literature, emphasis has been on occupational injustice as a phenomenon that stems from social, cultural, institutional policies or forms of governance that exert power to restrict the participation of individuals or groups in everyday occupations (Durocher et al. 2014; Nilsson and Townsend 2010). Occupational injustice is, therefore, the result of structural, discursive, and systemic conditions which filter through to the everyday lives of individuals (Kemmis and Mutton 2015). Injustices can occur anywhere and are sometimes less visible because they have become historically entrenched (Whiteford 2014). In particular, occupational injustice occurs when a person or group of people have limited power to make decisions or choices about participating in meaningful daily occupations (Chichaya et al. 2019). People may be “barred, confined, restricted, segregated, prohibited, underdeveloped, disrupted, alienated, marginalised, exploited, excluded or otherwise restricted from choosing and participating in occupations, and have a lack of opportunities for available resources to enable meaningful and enriching occupational engagement” (Townsend and Wilcock 2004a, p. 77). Occupational injustice also occurs when some groups in society are restricted formally (for example, through legislation) or informally (for example, as a result of social stigma) from “experiencing occupational rights, responsibilities and liberties. . . at any point across the lifespan, in the occupations typical of their community” (Nilsson and Townsend 2010, p. 58). The experience of occupational injustice has a significant impact on the health and well-being of individuals and society. At an individual level, occupational injustice can lead to negative, emotional, cognitive, and social outcomes, shorten a person’s life span, as well as cause serious health issues including negative physiologic effects contributing to excess stress hormones which can lead to artery damage, cholesterol buildup, and heart disease (Causey-Upton 2015; Hocking 2017; Mernar 2006; Wilcock 1998). At a societal and community level, occupational injustice through feelings of discontent and social unrest can undermine social cohesion and economic well-being, waste human potential, create health burdens, and threaten a community’s sense of safety (Suleman and Whiteford 2013; Hocking and Townsend 2015; Gerlach et al. 2018). Since the proposal of occupational injustice, six outcomes of occupational injustice have been defined in the literature. Initially, Townsend and Wilcock (2004a, p. 80) proposed four cases of occupational injustice, which were linked to specific occupational rights: • Right to experience occupation as meaningful and enriching. Resulting occupational injustice: occupational alienation • Right to develop through participation in occupations for health and social inclusion. Resulting occupational injustice: occupational deprivation

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• Right to exert individual or population autonomy through choice in occupations. Resulting occupational injustice: occupational marginalization • Right to benefit from fair privileges for diverse participation in occupations. Resulting occupational injustice: occupational imbalance. Occupational apartheid (Kronenberg and Pollard 2005) and more recently occupational displacement (Pizarro et al. 2018) have also been identified as forms of occupational injustice. An overview of these different forms of occupational injustice follows to enable the reader to gain a sense of the difference between them and situations in which they may arise.

2.1

Occupational Alienation

Occupational alienation was first defined as “the outcome when people experience daily life as meaningless or purposeless” by Townsend and Wilcock (2004b, p. 252). It is, they contended, a “prolonged experience of disconnectedness, isolation, emptiness, lack of a sense of identity, a limited or confined expression of spirit, or a sense of meaningless” (p. 80). Occupational alienation, informed by Marxist theory (Wilcock 2006), is also related to limited or forced participation in occupations viewed as meaningless or purposeless (Durocher et al. 2014; Stadnyk et al. 2010; Wilcock 2006). Literature has also highlighted that occupational alienation may be considered the result of external social processes that alienate a person from resources or opportunities to choose and participate in occupations of necessity and meaning (Chichaya et al. 2019; Smith 2014). Occupational alienation can have a serious impact on a person’s health and wellbeing (Wilcock 2006). Occupational alienation can also impact a person’s identity, as a result of prolonged disconnectedness, and/or participation in occupations that are not considered by that person to be meaningful or purposeful (Durocher et al. 2014). Wilcock and Townsend (2004b) also noted that the “soulless behaviour” of people who are institutionalized for long periods of time may be a result of the experience of occupational alienation. Examples of occupational alienation include situations of slavery, expatriation, precarious labor, refugee confinement, a person being removed from their own cultural occupations, and a person who resides in an institution and is required to participate in occupations that they find meaningless (Townsend and Wilcock 2004b).

2.2

Occupational Deprivation

Occupational deprivation is the most frequent example of an occupational injustice explored in the literature (Durocher et al. 2014; Malfitano et al. 2016). Wilcock (1998, p. 145) initially defined occupational deprivation as being characterized by “the influence of an external circumstance that keeps a person from acquiring, using or enjoying something.” Drawing on the work of Wilcock (1998), Whiteford (2000,

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p. 201) defined occupational deprivation as “a state of preclusion from engagement in occupations of necessity and/or meaning due to factors that stand outside the immediate control of the individual.” The external factors that result in a person experiencing occupational deprivation can include social, environmental, economic, geographic, historical, cultural, political, institutional, or interpersonal factors (Townsend and Wilcock 2004b; Whiteford 2000; Wilcock 2006). In their position statement on occupational deprivation, Occupational Therapy Australia (2016) also noted that attitudinal, discriminatory, professional, and racial impediments to participation could be regarded as occupationally depriving. Whiteford (2000) emphasized the importance of being aware that occupational deprivation is experienced when a person or group of people are unable to engage or choose occupations of necessity, obligation, or meaning as a result of external restrictions, not a result of factors internal to the individual. Whiteford (2010b, p. 305) also noted that an essential feature of occupational deprivation is that it “needs to always be interpreted within the historic, cultural, and social milieu and context within which it arises. In other words, occupational deprivation is a highly situated and complex phenomenon.” Occupational deprivation can have significant and long-term health implications for individuals and communities leading to: psychological and physical illness; impairment; reduced productivity; negative impact on well-being and quality of life; and a loss of identity and functional ability. These impacts may in turn create scenarios of poverty, social dislocation, and social exclusion (Miralles et al. 2016; Mpofu and Hocking 2013; Pizarro et al. 2018; Whiteford et al. 2020).

2.3

Occupational Marginalization

Occupational marginalization is the result of “invisible” informal norms and expectations that indicate who should participate in what occupations, how, when, where, and why people should participate (Stadnyk et al. 2010; Townsend and Wilcock 2004b). Occupational marginalization does not involve written laws or social policies, but informal and invisible forces within sociocultural arrangements, for example, habits, traditions, and expectations about behaviors which restrict engagement and choice in occupations for certain people or groups (Pizarro et al. 2018). Occupational marginalization may result in an individual not being offered the choices or opportunities and resources to engage in occupations that another person or group may be privileged to (Chichaya et al. 2019). Individuals may also experience occupational marginalization if they are required to participate in less desirable occupations, or occupations that involve little choice or control (Stadnyk et al. 2010; Townsend and Wilcock 2004b).

2.4

Occupational Imbalance

Occupational imbalance is the uneven distribution of occupations that is the result of limited opportunities to engage and choose in a variety of occupations. Occupational

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imbalance at an individual level involves significant time spent in one occupation at the expense of another (Stadnyk et al. 2010). At a societal level, occupational imbalance occurs when some individuals are offered numerous opportunities for occupational engagement while for others opportunities are limited, resulting in individuals being over-, under-, or unoccupied (Stadnyk et al. 2010). The negative impact on a person’s health as a result of occupational imbalance is evident through the statement that occupational imbalance involves “a state that occurs because people’s engagement in occupation fails to meet either their natural health requirements for physical, social and mental exercise or rest or their unique doing, being and becoming needs” (Wilcock 2006, p. 170). Evidently, a person’s quality of life can be negatively impacted when one is over- or underoccupied (Chichaya et al. 2019; Hocking 2017). Townsend and Wilcock (2004b) acknowledged that addressing occupational imbalance can be difficult as it not only refers to being under- or overoccupied, but also involves the privileges and benefits associated with occupations.

2.5

Occupational Displacement

Occupational displacement is defined as: . . .a phenomenon in which an individual or group is forcibly removed, disposed or displaced by reasons beyond his/her immediate control, leaving behind territories that had occupational/cultural/economic significance, and resulting in impoverishment or limited opportunities for meaningful and ecologically significant occupations. (Pizarro et al. 2018, pp. 468 469)

Occupational displacement was proposed by Pizarro et al. (2018) in relation to the lack of opportunities for occupational engagement and the negative impact on occupational life for an individual or group who is displaced from their territory. Examples of people who have experienced occupational displacement include refugees, Indigenous people subject to forced displacements, or dispossessed of their land, and incarcerated people.

2.6

Occupational Apartheid

Kronenberg and Pollard (2005, p. 67) defined occupational apartheid as “the segregation of groups of people through the restriction or denial of access to dignified and meaningful participation in occupations of daily life on the basis of race, colour, disability, national origin, age, gender, sexual preference, religion, political beliefs, status in society or other characteristics.” This deliberate exclusion or segregation results in occupational opportunities and resources being offered to some people but not others (Chichaya et al. 2019). The inequality of the status and value of a person in regard to their occupational engagement is associated with systematic circumstances (Kronenberg and Pollard 2005; Pizarro et al. 2018). Kronenberg and Pollard

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(2005) highlighted the importance of acknowledging occupational apartheid and addressing the political nature of the systematic and institutional structures that exclude individuals from social participation. However, it is a controversial concept. Polatajko et al. (2007, p. 77) advised caution in its utilization, suggesting it is limited to contexts where “access to meaningful occupation is denied not out of fear or ignorance, but out of an organized political or social desire to deliberately exclude access.”

3

Contextual Examples of Occupational Injustice

As well as defining occupational injustice, the literature also illuminates experiences of occupational injustice. This section identifies research which has provided insight into occupational injustices experienced by a range of people in different institutional settings.

3.1

People in Correctional Facilities

Correctional facilities are sites in which a defining feature is the restriction of freedom(s) including how individuals use time. Indeed, a focus on time use, central to an exploratory study conducted by Whiteford over two decades ago, provided a detailed insight into the experience of occupational deprivation by inmates with special needs in one of New Zealand’s maximum security prisons. Using a modified time sampling methodology, Whiteford (1997) completed observations and interviews with staff and inmates over 24-hour periods for a duration of 2 weeks. The study highlighted that a severely limited range of activities, a restricted tool use policy, and a lack of differentiation between daily and weekly routines contributed to a sustained state of occupational deprivation over time. The impacts reported included sleep becoming an occupation of choice in the face of limited opportunities for engagement in activities and increased rates of self-harm while inmates were in seclusion. Crabtree and colleagues (2016) also explored the experience of occupational deprivation and the impact of environmental restrictions on the well-being of inmates. As one inmate in that study described it, the existential experience of occupational deprivation resultant from a lack of occupational opportunities in undifferentiated time is like “a desert wasteland. . .[bringing about] continual wearing down and meaninglessness” (p. 5).

3.2

People Seeking Refugee or Asylum

People who are seeking asylum and refuge have been identified as being at a high risk of experiencing occupational deprivation (Whiteford 2010b). A diverse range of literature has explored occupational experiences in refugee camps and detention centers internationally. People who are refugees or asylum seekers experience

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occupational deprivation at different stages throughout their process of transitioning to a new country. Research has consistently suggested that: People in refugee camps or detention centers have very limited opportunities for meaningful occupational engagement, decision-making, or choice; people feel they have a loss of control over their life; and people experience difficulty in maintaining their identity (Huot et al. 2016; Morville and Erlandsson 2013; Steindl et al. 2008; Thornton and Spalding 2018; Whiteford 2005). The negative impact of external factors on the occupational engagement of refugee and asylum seekers is consistent with the experience of occupational deprivation. Steindl and colleagues (2008) explored the daily occupational engagement of women living in an Australian refugee camp and likened the procedures of the refugee camp to procedures in prison. Huot and colleagues (2016) and Whiteford et al. (2005) discussed the impact of institutional policies on restricting the occupational engagement of refugees, forced migrants, and asylum seekers. Being disconnected physically and socially from familiar cultural, social, and economic environments also impacts the experience of occupational deprivation by refugees and asylum seekers (Whiteford 2010b). Similarly, Morville and Erlandsson (2013) explored the experience of occupations for three men in a Danish asylum center. This study highlighted that the participants had been subjected to occupational deprivation as a result of politically oppressive systems. Limited access to paid work and community and health services also impact on patterns of occupational engagement of people who have experienced forced migration (Huot et al. 2016).

3.3

People in Residential Aged Care

Over time, it has become increasingly evident that people in residential aged care have also been subjected to experiences of occupational injustice. Holthe and colleagues (2007), for example, explored occupational patterns of people with dementia in a residential care facility. In their study, they found that people may be experiencing occupational deprivation created not by environmental restrictions alone, but in concert with external factors such as “prevailing social attitudes and expectations - depriving residents of occupations and leading them to become passive” (p. 104). Similarly, Du Toit and colleagues (2019b) explored the experience of occupational engagement in residents with moderate to advanced dementia. Their interpretive systematic review highlighted an organizational culture in aged care settings which can negatively impact on the provision of occupational opportunities for residents resulting in entrenched scenarios of occupational deprivation. Residential aged care settings have also been found to unreasonably restrict people’s occupational choice and participation, with the environment and culture reinforcing passivity, dependency, and chronic states of occupational deprivation (French 2001). The findings of the Royal Commission into Aged Care in Australia also presented that many residential facilities are sub-substandard and that, as a whole, the aged care system “fails to meet the needs of its older, vulnerable citizens. It does not deliver uniformly safe and quality care, is unkind and uncaring towards older people

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and, in too many instances, it neglects them” (Royal Commission into Aged Care Quality and Safety 2019, p. 1). The lack of provision of adequate levels of activities and opportunities for occupational engagement does indeed constitute a lack of quality care and represents neglect. Such neglect can have many serious impacts of which occupational deprivation is one.

3.4

People in Mental Health and Forensic Mental Health Facilities

Murphy and Shiel (2019), in a case study approach, explored people’s experience of engaging in meaningful occupations in a residential mental health facility. Semistructured interviews with residents, their family members, and staff members highlighted the following: residents experienced restrictions engaging in activities of daily living; had few opportunities and resources for engagement in purposeful occupations including productive-/work-related roles; and institutional practices and rules contributed to restrictions in occupational choice and autonomy. In summary, the study identified that people in mental health facilities experienced occupational marginalization and occupational deprivation as a result of power imbalances and societal stigmatization. Perkes et al. (2015) and Whiteford et al. (2020) also found that in forensic mental health facilities, occupational derivation can be a feature of institutional care if not actively “combatted” through an overt focus on the provision of context-relevant occupational opportunities within the constraints of the forensic environment.

3.5

People in Health and Rehabilitation Settings and Risk Aversion

A need to establish an occupationally just environment in health and rehabilitation settings has been promulgated in the literature by a number of authors to date. Systems of power distribution in health settings have been documented as being problematic and a major barrier in advancing occupational justice (Agner 2017). In many respects, a dominant medical model of care can be viewed as an institutional barrier that has, in some settings, resulted in inequitable power distribution. Unwittingly, health professionals themselves may reproduce these inequitable power relations through hegemonic practices which undermine their ability to provide justice-oriented care and services (Galvin et al. 2011). Another institutional – yet invisible – barrier constraining occupational choice and occupational engagement in the health system is the sick role discourse. Remarkably still prevalent in some settings, it is a pervasive discourse which reinforces an expectation that patients are passive, excused from normal duties including commitments associated with important occupations and roles, and forms of decision-making (Agner 2017). In an adolescent care hospital ward, it was identified that adolescents experienced occupational deprivation due to a combination of factors besides the sick role including a

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restrictive physical environment, lack of leisure activities available, and lack of privacy (Miralles et al. 2016). As well as the sick role discourse and its impacts on expectations of roles and behaviors, another discourse which has come to dominate in many health settings is that of risk. While a full discussion of risk aversion in health care settings is beyond the scope of this chapter, what is important for workers in health and human service settings to remember is that a dominant risk discourse can be challenged. This is through undertaking a consistent approach to risk analysis and mitigation strategies alongside the implementation of safe, activity-specific, protocols which allow dignified human engagement (Perkes et al. 2015).

Box 2 The Lived Experience of Occupational Deprivation: An Example of Occupational Injustice in Institutional Care

Inpatient rehabilitation is an institutional setting in which limited research exploring people’s occupational experience has been conducted, especially research focused on identifying what conditions enable or constrain people’s occupational engagement and participation. The stated purpose of inpatient rehabilitation is to maximize independence and quality of life for a person with an impairment, activity limitation, or participation restriction due a health condition (Department of Health and Human Services 2020; IHPA 2019). However, despite such a stated institutional intention, people in inpatient rehabilitation settings have identified feeling that there are limited opportunities for meaningful activity engagement; this tends to result in people spending most of their day alone and inactive (Blennerhassett et al. 2018). Parallel to the documented experiences of occupational injustice and occupational deprivation in other institutions, rehabilitation patients have also identified having limited opportunities for making a choice, feeling disempowered, and having a desire to be acknowledged as an individual rather than as sick person (Killington et al. 2019; Mangset et al. 2008). Findings from literature also indicate that in inpatient rehabilitation, institutional discourses have a significant impact on a person. People’s opportunities for choice and autonomy have been found to be constrained as a result of the restrictive inpatient rehabilitation environment and culture with strict timetabling practices, rigid meal delivery, and risk-adverse hospital policies (Kenah et al. 2018; Killington et al. 2019). A recent study was completed by the authors which explored experiences of people who are patients in an inpatient rehabilitation setting, specifically what conditions enabled or constrained people’s occupational engagement and participation in inpatient rehabilitation. The research involved the observation and interviewing of people who were patients, and interviewing of inpatient rehabilitation staff members. For the purpose of this chapter, two narrative extracts from the interviews completed with people who were patients in the inpatient rehabilitation setting (continued)

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Box 2 (continued)

– Robert, an Aboriginal man, and John (not their real names) are presented to illuminate the lived experience of occupational deprivation while in an institutional setting. Robert Each patient has an individual need and the way the system is set up doesn’t allow that. The system and the person need to integrate. . . It’s all scheduled for you, you might as well be in prison, get a tray and slip it through the slot. That’s what it feels like, especially when you don’t get the food that you order, it’s such a big thing. A lot of patients here they feel in prison. . .because, we haven’t got the freedom. Like to get outside, we have to ask and then we can go into this little courtyard if we are allowed. . .it is a tiny caged area. . . we need an area to be ourselves. And, where the medical staff didn’t interfere. I don’t know. We need some plants. As an Indigenous man and a bushman myself, I love and need nature and would love something growing to remind people things are growing. Patients could get up and take care of a plant when it’s sitting next to them. Any sort of plant. Water and feed something. . . it’s something alive and it’s green. Not having access to nature. . . It doesn’t make me feel free. It doesn’t make me feel like I’m a decision maker in this process. It’s isolating. . . We need something that like a community garden. . . where people from the community could come and work on equal par with patients, people could mingle with the patients so they don’t feel like they are in jail, and think yeah, cool, life is still out there and you’d get people forgetting they can’t do things and starting to do them John My freedom is being take away here. I feel like I am stuck. I don’t know why I am here, I am doing things that I already know. Nothing is new, same exercises that I do at home. I am losing my home life, I am losing who I am. I don’t know why I can’t come in and do my therapy during the day then go home at night. Least then I can maintain the house and keep doing things I like, like doing the gardening, being with my dog, even the laundry and mowing the lawn. Instead I am stuck here, I can’t do the things I want or like to do and I am unsure why. My daughter has to travel to (x) to see me and look after my house and my dog is fretting I am fretting without him. It makes no sense to me. The only reason why I can think they are keeping me here is for monetary gain, the hospital gets more money from me sleeping in this bed rather than me just coming in for therapy during the day. I am over it. I get nothing from being here just sit around waiting, doing the same therapy, missing what I like. I can walk and shower myself. I think I am right to go but who knows if I will get a say in that. I am trying to stick to my values/beliefs to hold onto my freedom and go home.

4

Advancing Occupational Justice: Using the Participatory Occupational Justice Framework

In the previous sections of this chapter, the concepts of occupational justice and injustice have been discussed and case examples of the experience of occupational deprivation (as one form of occupational injustice) have been presented. This section considers how a practitioner can tackle those situations which represent an

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occupational injustice for a group of people and work together for change. The vehicle that has been proposed as being appropriate for this collaborative process is the Participatory Occupational Justice Framework (POJF). Essentially, the purpose of the POJF is, through raising awareness of and addressing scenarios of occupational injustice, to facilitate social inclusion. While it may be self-evident that advancing occupational justice is dependent upon a philosophical commitment, indeed an “agenda” of inclusion (Hocking 2017), social inclusion is a term influenced by multiple discourses. Put simply, social inclusion focuses on ensuring people have opportunities, resources, and capabilities to fully participate in life and that they are supported to be a contributing citizen in the society in which they live (Australian Social Inclusion Board 2010; Pereira 2015; Whiteford and Pereira 2012; Pereira 2017). Social inclusion can also be understood as: recognition, capabilities, opportunity, resources, choice, participation, solidarity, rights, and citizenship (Whiteford and Pereira 2012; Pereira and Whiteford 2013; Pereira et al. 2020). Using the POJF is very much guided by the processes that underpin it. The POJF is intended as a guide, not a prescription, for action and differs from other professional models and frameworks in some significant ways. Besides philosophical and ideological differences pertaining to power sharing, outcome identification, and politicization of effort, one of the key differences of the POJF is its nonlinearity. To reinforce the nonlinear progression of movement through these processes and the fact that there is no set starting point, this is usually represented as a circle (see Fig. 1). There is insufficient space here to present an in-depth presentation of all the strategies and examples within each; however, for these the reader is referred to Townsend and Whiteford et al. (2005), Whiteford and Townsend (2011), and Whiteford et al. (2017). In summary form then, the collaborative, enabling processes outlined in the POJF are as follows: • • • • • •

Raise consciousness of occupational injustice. Engage collaboratively with partners. Mediate on an agreed upon plan. Strategize resource finding. Support implementation and continuous evaluation. Inspire advocacy for sustainability or closure.

Despite the fact that a practitioner can (and, in complex real-world settings, often does) start anywhere based on how they enter the interaction with a group of people, a typical start would be with raising consciousness with respect to a scenario of occupational injustice in a given context. Similarly, a desirable finishing would be closure and agreement based on evaluation from all partner perspectives. Ideally, evaluations should address mechanisms to support longer-term sustainability through the use of context-appropriate resources, for, as Rushford and Thomas (2016) pointed out, the pursuit of occupational justice must necessarily consider issues of sustainability at all levels inter alia. As well as being nonlinear, the processes may also be reenacted or adjusted depending on specific contextual forces and events. For this reason, contextual

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Raise consciousness of occupational injustice

Inspire Advocacy for Sustainability or Closure

Engage Collaboratively with Partners

Collaborative Enabling Processes

Support Implementation and Continuous Evaluation

Mediate Agreement an a Plan

Strategise Resource Finding

Fig. 1 POJF processes

drivers are also foregrounded in the POJF and are identified as the: local practice and systems context; and the regional, national, and global sociocultural, economic, and political context (see Fig. 2). These contextual “frames” exert a powerful influence on occupation-focused practitioners and differ dramatically from country to country. At a systems level, they may include availability of resources – fiscal and human, professional regulation, professional organizations and labor unions, and institutional codes of ethics and governance regimes. More broadly, contextual influences can also include the following: prevailing economic ideologies and related policies; cultural and faith-based belief systems that govern social and occupational behavior; health and social network supports; educational systems and structures; use of social media; telecommunications and transportation; and environmental protections as well as primary resource management. Understanding the complex interactions between these drivers relative to emancipatory action requires a critical epistemic

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POJF Collaborative Processes

Local Practice, Environmental, Systems & Governance Context [physical space/locale; access to human and other resources including technology; safety & secutity] National Political, Legislative, Policy, Sociocultural and Economic Context [legal frameworks and human rights observances; cultural, gender, religious and secular considerations; sustainable resources]

Regional & Global Context [national borders; conflict zones; trade partners; strategic aliances]

Fig. 2 Local, national, and global contextual influences on POJF processes

stance. The critical epistemological “Articles” underpinning the POJF are discussed in the next section.

5

Critical Epistemological Foundations of the POJF

From its inception, the POJF was developed with an acknowledgment that advancing occupational justice is an endeavor that cannot be undertaken without a critical orientation, an orientation noted as a strength of the POJF within the broader occupational science discourse by Durocher, Gibson, and Rappolt (2014). The need for epistemological reflexivity (Kinsella and Whiteford 2009) has been reinforced more recently by Farias, Rudman, and Maghalaes (2016, p. 240) who pointed out that, in order to avoid inadvertent hegemony, “addressing the epistemological foundations that underlie our work is essential to move toward developing and implementing transformative and justice oriented practices in an attempt to more fully consider the complexities of people’s everyday lives.” The six articles presented below represent a “distillation” of ways of knowing, being, and doing consistent with a critical epistemological basis. These have been developed from earlier iterations of the POJF (Townsend and Whiteford 2005; Whiteford and Townsend 2011; Whiteford et al. 2017). Importantly, the first article foregrounds human rights as central:

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Article I: Occupation-focused practitioners strive to engage in critical reflexivity to constantly challenge gaps between specific discipline-oriented philosophies, theories, and everyday practice as well as between universal principals of human rights and institutional policies, practices, and environmental conditions. Article II: Occupation-focused practitioners aim to be collaborative and participatory in all stages of decision-making and throughout all decision-making processes. Article III: Occupation-focused objectives ideally address the means and ends of social inclusion for the people whom they work with who are, or may be at risk of becoming, marginalized, disadvantaged, or oppressed. Article IV: Occupation-focused approaches and methods are those which seek to engage people as individuals, as families, and as communities in obligatory, necessary, and voluntary occupations which are deemed culturally appropriate by those persons, individually or collectively. Article V: Collaborative objectives are those ideally aimed at ensuring more equitable opportunities and resources are available for people to exert optimal levels of control and choice in everyday occupations. Article VI: Occupation focused practitioners strive to work with others in pursuit of the ideal of occupational justice irrespective of attendant political and economic challenges and current environmental limitations. Hope, and a vision of possibility, underpins their efforts despite attendant environmental, cultural, political, or economic constraints. The articles are clearly aspirational. They do, however, provide a foundation that enables occupation-focused practitioners to reflect on everyday practices – and the practice architectures (Kemmis and Mutton 2012) within which they take place. The POJF, based on a commitment to these articles, is intended to serve as a guide for such action. For reference purposes, a summary of these articles and their core concerns is captured in Table 2. In closing this section, it is worth stressing that principles of knowledge exchange, cocreation, and knowledge coproduction need to underpin such efforts. Ultimately, this transformative orientation to working with people to advance occupational justice may be understood as a form of radical solidarity (Whiteford 2020). Box 3 Using the POJF to Advance Occupational Justice in Challenging Environments: A Case Study from Palestine

The POJF has been used in different settings by practitioners internationally to address localized occupational injustices. In this mini case study, Suzanne, a university lecturer in Palestine, outlines how she started with the POJF as a guide and went on to progress an ethics application for a qualitative study exploring the occupational injustices experienced by Palestinian students and staff members. Their narrative insights and reflections are presented here. (continued)

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Table 2 Key foci of articles underpinning POJF Article no I II III IV V

VI

Focus Human rights Equalized power relations Social inclusion Social and cultural relevance Equitable opportunities and resources Agency within adverse environments

Keywords Reflexive practice, institutional discourses, and environments/conditions Collaborative, power sharing, and decision making Occupational engagement, at risk persons and populations, and participation Meaningful occupation as determined by individual, family, and community perspectives, situated meaning Optimizing levels of choice, control, and determination

Commitment, hope, and advancement of occupational justice

Box 3 (continued) Suzanne Everyday life for Palestinian people can be very tough; doing even small things are challenging because of the presence of checkpoints that can take a lot of time to pass through. We experience many occupational injustices: occupational apartheid is one and occupational deprivation another common feature of our lives due to the many restrictions placed upon us. Essentially, we are not allowed freedoms of movement, association, participation, speech or worship. In this context, I wanted to use the Raising Consciousness of Occupational Injustice process from the POJF in order to illuminate (through exploratory research) the ways in which students at the university and staff are impacted by the experience of occupational deprivation in everyday life and how they respond in forms of non violent resistance. After gaining institutional ethics approval, Gail Whiteford and I worked together to design a semi structured interview guide (with a phenomenological orientation) which then served as a basis for interviews I undertook. Here are some brief narrative accounts which capture their lived experiences of occupational injustice in our challenging situation. I have changed their names to protect their identities. Hamid: A Palestinian University Student Living here is not so easy, every day you are in danger, a soldier may kill you on your way to anything the market, school or university, you don’t know. The people in Jerusalem they stop the busses and they arrest many people and [also] you have to pay so much more than people from the West Bank. They don’t have so many challenges and it is cheaper for them. Everything is allowed for Israelis but not for us. Anything we want a passport, a license, it takes months just to take an appointment. We are discriminated against. If you want to travel it takes so much time to get permission. If anyone is from a big family . . .and someone is in jail [then] you cannot work, cannot travel to do anything.

(continued)

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Box 3 (continued) Yafa: A Palestinian Academic I feel very empowered, you know I never thought [or] never felt I am low quality because I am female or a Muslim, or because I am from a refugee camp, My family has been a part of resistance [but] I could never be a part of violent resistance this is not for me and not right not my role. Violence is not the solution; it can never be a solution. What I believe is to build society, equal relationships and then putting pressure on those in authority this is it for me. It gives me a feeling of being very important, my role is important and yes, that I can influence other people in a positive way, [that] I am a part of the national struggle. This is how I feel.

For a more in-depth description of the research, see chapter by Whiteford and Haddad in Illuminating the Dark Side of Occupation edited by Twinley https://www.taylorfrancis.com/books/e/978042926625.

6

Conclusion and Future Directions

This chapter first presented the concept of occupational justice and its origins. Next it presented key concepts and traced the discursive development of these concepts over time, and then it moved to a discussion of occupational injustice and presented a summary of forms of occupational injustice and settings in which this is most likely to occur. Finally, the chapter presented the Participatory Occupational Justice Framework as a tool that may have utility for practitioners in seeking to tackle occupational injustice as a collaborative process across settings and contexts. Of course, in tackling occupational injustice, context is everything. Community, NGO, and institutional environments vary enormously in everything from resource availability to systems of governance to legislated compliance requirements. This reality notwithstanding, justice-focused action is still possible, especially when working in cocreating, coproducing ways and when action is galvanized by a unifying set of principles. It is hoped that practitioners working in health and human services see the relevance and importance of the pursuit of occupational justice to their work and, consistent with this appreciation (which may be a significant shift in some areas), view the people they work with not as patients, clients, users, or consumers, but rather as people. It is an unashamedly de-professionalized stance, but one through which fair and just societies are created and sustained.

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The Empathy Framework and Social Inclusion

11

Eric Leake

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Definitions and Features of Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Social Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Practices for a More Inclusive Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Rhetorical Listening and Rhetorical Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Listening to Marginalized Voices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Diversity and Social Positions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Intercultural Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Biases and Barriers to Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Blame, Atomism, and Dehumanization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion: Extending Empathy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

With its focus on the perspectives, feelings, and situations of others, empathy can be a powerful means of social inclusion. Empathy also can be a powerful means of social exclusion due to its biases and limitations. This chapter outlines the social dimensions of empathy to understand it as more than an interpersonal phenomenon and to highlight the significance of empathy for issues of diversity, social position, and inclusion. Drawing in particular upon recent work in rhetorical theory and social psychology, the chapter reviews practices for a more inclusive empathy and recognizes the effects of biases. It concludes with comments on the potential of extending empathy through intentional practice and reflection. Keywords

Empathy · Listening · Perspective taking · Biases · Diversity E. Leake (*) Department of English, Texas State University, San Marcos, TX, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_11

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Introduction

Empathy is an inherently social process in the sense that it always involves more than one person. Even instances of self-empathizing – when one attempts to step outside of one’s own immediate perspective and to empathize with oneself, with one’s motivations and limitations, success and failures, one’s own thoughts and feelings, in order to better understand and extend compassion to oneself – are built upon the empathic move of relating to oneself as somebody else (Neff 2003). For example, a person might empathize with their younger self, understanding and forgiving themself for a mistake they made or sharing with themself in a still resonating joy. Self-empathy is possible by multiplying the self, making it social. From the self, empathy extends outward to many more and increasingly different others in what Peter Singer (2011) identifies as an expanding circle of moral concern. The challenge for empathy is not being social; the challenge is inclusion. Empathy can be a vital means of social inclusion acting to extend the circle of moral concern to others. In empathizing, one attempts to share the perspectives and feelings of others, thereby including them within one’s own concerns. By contrast, one of the surest means of social exclusion is the denial of empathy, a cutting off of others from consideration as fellow subjects due equal moral concern. With respect to social inclusion, empathy may be seen as both process and goal. Empathy is a process in that is always a work in progress. Empathy is never achieved, it is never full and complete, but is realized in the empathizing that is always being informed, attempted, checked, and recalibrated in order to come closer to the perspectives and feelings of others. Social inclusion likewise is always a work in progress reaching toward greater inclusivity. In this way, empathy and social inclusion may be best thought of as verbs, as ongoing actions, as empathizing and socially including. Social inclusion and empathy simultaneously are goals as well. They are ideals that people work toward. People can pursue specific actions, institute practices, and reflect reiteratively on the successes and failures of those actions and practices in order to move closer to empathy and social inclusion. Both empathy and social inclusion are aligned as goals, and intentionally pursing one often supports the other. This is not to say that there are not risks and limitations to empathy that can work against social inclusion, particularly in empathic biases. Examples of biased, narrowly focused empathy can be seen in contemporary political polarization, identitarianism movements, ethnic nationalism, and tribalism in general, as detailed in Joshua Greene’s Moral Tribes (2014). However, while bounded in-group empathy can blind people to the concerns of others, the larger trend is empathy supporting social inclusion. The sections that follow first review definitions of empathy with an emphasis on its cognitive and affective dimensions. The focus then shifts to Elizabeth Segal’s (2018) concept of social empathy for its components and relationship to interpersonal empathy. Returning to the author’s home discipline of rhetoric and composition in conjunction with social and developmental psychology, the chapter outlines practices of inclusive empathy such as “rhetorical listening” (Ratcliffe, 1999), “critical empathy” (DeStigter, 1999), “rhetorical empathy” (Blankenship, 2019),

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and perspective taking. The chapter considers the relationship between diversity and empathy, recognizes the biases and barriers to empathy, and highlights the ways that empathy can backfire in reducing social issues to interpersonal interventions. It concludes by reaffirming the value of extending an intentional, reflective empathy for greater social inclusion.

2

Definitions and Features of Empathy

Empathy is a relatively new term in English. Susan Lanzoni (2018), a historian of psychology, traces the term back to nineteenth century German aesthetic philosophy and the concept of Einfühlung, literally “in-feeling,” as a viewer projects themself or feels their way into the physicality of a sculpture, painting, scene, or object. Psychologist Edward Titchener translated Einfühlung to the English “empathy” early in the twentieth century. From then empathy became primarily understood as a psychological process not so much of bodily projection in response to art and objects but of sharing feelings and perspectives with others. Philosopher Amy Coplan (2011) proposes my preferred definition of empathy for its precision and detail. In her words, “. . .empathy is a complex imaginative process in which an observer simulates another person’s situated psychological states while maintaining clear self-other differentiation” (p. 5). To expand upon that definition, empathy is complex because it includes affective and cognitive components. It is imaginative because it goes beyond easily verified observations. To recognize the situatedness of another’s psychological states is to attempt to account for context and history. Self-other differentiation is a key component of empathy in maintaining distinctions between the empathizer and the one empathized with, which is critical for the recognition of differences. For purposes of social inclusion, a more succinct definition is offered by developmental psychologist Martin Hoffman (2000, p. 3): “To me, empathy is the spark of human concern for others, the glue that makes social life possible.” Empathy is what helps connect people to other people, allowing them to better understand one another and to more effectively cooperate. The two most significant features of empathy are the affective and cognitive components. Empathy is what helps connect people to other people, allowing them to better understand one another and to more effectively cooperate. Hoffman (2000) further defines empathy as “an affective response more appropriate to another’s situation than one’s own” (p. 4). It is important to note again here the attention to the situation of the other person. The cognitive component of empathy is often divided into two modes, self-focused perspective taking and other-focused perspective taking (Hoffman 2000). In self-focused perspective taking, the empathizer imagines themself in the other’s position. This is the classic move of putting oneself in another’s shoes. In other-focused perspective taking, the empathizer imagines what it is like to be the other in the other’s position. This requires paying closer attention to the other’s experiences, history, circumstances, and desires. As Hoffman details, self-focused perspective taking can be more affectively intense because imagining oneself in another’s position can foreground the emotional response as closer to

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one’s own feelings. What other-focused perspective taking loses in intensity, it gains in accuracy due to its attention not on one’s own feelings and desires but on the more distanced feelings and desires of the other. Attempting to combine or oscillate between self-focused and other-focused perspective taking could join the affective intensity of the first with the greater accuracy of the second. A somewhat debated feature of empathy, and one critical for social inclusion, is the potential of empathy to lead to moral concern and prosocial actions. Hoffman (2000) connects empathy to moral principles of caring and justice through processes of empathic guilt in which one empathizes with others who may be hurt by one’s actions. Social psychologist C. Daniel Batson (2011) has extensively demonstrated with the empathy-altruism hypothesis that empathic concern can lead to altruistic actions to benefit others. Empathy is strongly associated with care ethics (Slote 2007) and feminist theory. The moral standing of empathy has been questioned, most recently and prominently by psychologist Paul Bloom (2016). Bloom’s critique is that empathy is a poor guide for helping others given empathy’s many biases and limitations. Key to Bloom’s argument is his definition of empathy that focuses upon empathy’s affective dimensions, which are most susceptible to biases. He instead champions rational compassion as a better alternative for informing moral actions. Bloom’s critique of empathy also applies for social inclusion, as any moves for social inclusion that rely solely upon affective empathy are likely to be discriminatory and further social exclusion instead. Debates over the value of empathy often hinge upon how empathy is defined. When empathy is defined as a primarily emotional or affective response, it lacks the checks and guidance that cognitive empathy provides. When empathy is defined as a primarily cognitive form of perspective taking or understanding the thoughts of others, it lacks the shared affective dimensions that most forcefully motivate action and direct attention to others’ well-being. At its strongest and most comprehensive, empathy includes affective and cognitive components detailed above.

2.1

Social Empathy

Social work professor Elizabeth Segal (2018) breaks empathy into two main parts: interpersonal empathy and social empathy. Interpersonal empathy is the mode most people are familiar with. It is empathy as experienced between two individuals. Social empathy is more abstract and challenging. As Segal defines it, “Social empathy is the broader application of interpersonal empathy. It is the ability to understand people and other social groups by perceiving and experiencing their life situations” (p. 4). Some psychologists, such as Bloom (2016), would argue that empathy cannot be experienced for more than one or two people at a time since there is no way to simultaneously imagine the perspectives and feelings of multiple others. Segal, however, contends that interpersonal empathy can provide a foundation for extending empathy to groups as collections of individuals with some shared experiences. A key feature of social empathy is “learning about and understanding the historical context of group experiences, including the structural inequalities that have

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shaped communities” (Segal 2018, p. 4). Social empathy considers individuals and groups in contemporary and historical contexts. It is particularly attentive to those who have suffered oppression or otherwise been socially marginalized. As a broader application of interpersonal empathy, social empathy may include prosocial motivations to help improve the conditions for marginalized people and to work toward greater social justice. In the summer of 2020, social empathy was on display in the Black Lives Matter protests across the United States and abroad. The protests were galvanized by the death of George Floyd under the knee of a Minneapolis police officer. Viewers of the video of Floyd’s death responded empathically with his suffering, so much so that many could not watch the full video depicting the more than eight minutes that the officer held his knee on Floyd’s neck. Many viewers likely had to turn away in part from what Hoffman (2000, p. 197) calls “empathic over-arousal” that becomes personal distress. The protesters’ interpersonal empathy with Floyd was then extended to social empathy for the suffering of Black people under police. This social empathy was informed by listening to descriptions of Black experiences and considering the social and economic conditions of many Black lives. It also was informed by the long history of slavery, oppression, and discrimination against Black people in the United States. Social empathy added to the motivation of protesters to act for social changes to improve the conditions of Black lives. Empathy can be an effective spark to motivate action. The movement started with interpersonal empathy with a specific individual and grew into a broader social empathy and social justice movement. Similar recent moves of social empathy – starting with an individual, extending to a larger group, and advocating change for social justice – may be seen in the #metoo movement, the acceptance of Syrian refugees in Germany, and support for undocumented immigrants in the United States, among others. Shifting from an interpersonal focus to a social theory of empathy also can help account for the ways that empathy is not only a personal psychological phenomenon but produced by social conditions. Segal (2018) identifies poverty as testing social empathy as far as poverty is understood as being the fault of the poor. She notes that people are less likely to empathize when they are themselves going through hard times. This has been labeled an irony of empathy, that often at the times of greatest inequality and social stress, when the largest portions of society are going through hard times, people may be least likely to extend empathy to others due to those same social conditions (Leake 2018). People are resistant to seeing reflected in others their own vulnerabilities. Empathy should be understood as not only a personal psychological phenomenon, occurring in people’s heads, but as a social one located in the conditions, values, and discourses in which people are immersed (Leake 2018). Empathy is socially produced through the ways that people judge and values others, through their willingness to recognize their own vulnerabilities and relationships to others, and through the social conditions that inform how empathy and occasions for empathy are understood. Social empathy is not without limitations. Although it is built upon interpersonal empathy, as it becomes untethered from individual experiences and histories, it loses

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both intensity and accuracy. To the degree that social empathy becomes concerned with social issues in the abstract and less concerned with the effects of those issues on individual or collective lives, it loses the affective connection at the heart of empathy. At the same time, social empathy can neglect individual differences while focusing on group concerns, flattening individuals under larger group characterizations. It is worth questioning what exactly it means to empathize with a group. One must always keep in mind that group identities are not the sole determiner of individual experiences. Group identities and histories can be an important starting point but need to be held in balance with an awareness of the wide varieties of individual experiences within and across collectives. Where social empathy excels is in foregrounding social issues that require social solutions. Interpersonal empathy often suggests only immediate interpersonal actions, as in acts of individual charity, that are insufficient for the scale of social issues. Social empathy, however, urges a collective response for community solutions to benefit those beyond the encounter of interpersonal empathy.

3

Practices for a More Inclusive Empathy

It is not hard for people to empathize with others much like themselves or to relate to situations much like their own. Such empathy can occur with minimal or no effort and tends to not be very inclusive. It is much more challenging to empathize with others who are increasingly different from oneself, those who have different experiences, desires, and circumstances. For empathy to extend beyond the most familiar others takes effort and practice.

3.1

Rhetorical Listening and Rhetorical Empathy

Listening is a fundamental practice of empathy. Ratcliffe (1999) describes a process of “rhetorical listening” in which listeners: invoke both their capacity and their willingness (1) to promote an understanding of self and other that informs our culture’s politics and ethics, (2) to proceed from within a responsibility logic, not from within a defensive guilt/blame one, (3) to locate identification in discursive spaces of both commonalities and differences, and (4) to accentuate commonalities and differences not only in claims but in cultural logics within which those claims function. (p. 204, emphasis original)

All these detailed points are worth unpacking. Rhetorical listening is reflexive in the sense that it is both inward and outward looking as a means to understanding self and other. It does not start from a position of blame, as is so common when people attempt to listen to disadvantaged others who are blamed for their disadvantages. It simultaneously recognizes commonalities in experiences, vulnerabilities, and potentials alongside differences that also make people who they are. Finally, Ratcliffe’s

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rhetorical listening is concerned not only with what is said but with the larger “cultural logics” or ways of knowing that give meaning to what is said. This is similar to the social contexts and histories that Segal stresses in social empathy. Ratcliffe is particularly interested in the possibilities of rhetorical listening for crosscultural dialogues and for understanding among and across differences in race/ ethnicity and gender. Her rhetorical listening is a practice in social inclusion. Rhetorician Lisa Blankenship (2019) offers the concept of “rhetorical empathy” in which people listen to one another’s personal stories as a means of potential persuasion and change. She defines rhetorical empathy as “. . .a choice and habit of mind that invents and invites discourse informed by deep listening and its resulting emotion, characterized by narratives based on personal experience” (p. 5). Blankenship identifies four features of rhetorical empathy: “Yielding to an Other by sharing and listening to personal stories”; “Considering motives behind speech acts and actions”; “Engaging in reflection and self-critique”; and “Addressing difference, power, and embodiment” (p. 20). These features may all be purposefully employed in a rhetorical or discursive engagement in order to foster a deeper understanding of one another’s views and perhaps movement toward more inclusive positions.

3.2

Listening to Marginalized Voices

An important consideration for rhetorical listening is who is listened to. Often the people with the loudest voices are the ones who receive the widest hearing. Social inclusion compels people to listen to voices that are more often neglected or dismissed. Philosopher Alison Jaggar (1989), writing on feminist epistemologies and social justice, forcefully argues that those people who suffer from social injustices best understand the injustices they suffer under and need to be heard. As Jaggar writes, “. . .the perspective on reality available from the standpoint of the oppressed, which in part at least is the standpoint of women, is a perspective that offers a less partial and distorted and therefore more reliable view” (p. 162). When such viewpoints are not readily available, they need to be sought out, invited, and supported. One strategy for including such voices is to look for omissions. The key here is to focus not only on who is included but also who is left out. It is a kind of reverse highlighting that puts aside those inclusions that first capture attention to instead look more closely at the presences and noninclusions that are otherwise overlooked and then seeking to understand why they are not included, how they are overlooked, and how they might best be included in a way that does not place the burden of inclusion upon the omitted. Inclusion is more than the sum of single acts of invitation, support, and listening. Taken together, these acts create a feeling of connection that helps sustain social inclusion. Psychologists Noah Goldstein, I. Stephanie Vezich, and Jenessa Shapiro (2014) have studied the effects of what they call “perceived perspective taking.” They note that research on perspective taking usually focuses on the processes and effects for the perspective taker. They instead focus on the effects for the person

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whose perspective is taken. They find the benefits are much the same as for the perspective taker, as perceived perspective taking creates an increase in liking the other, a greater sense of self-other overlap in shared commonalities and importance to one another, and a stronger likelihood of helping. Empathic practices of rhetorical listening, rhetorical empathy, inviting and supporting marginalized voices, checking blind spots, and working to take the perspectives of others are beneficial not only in themselves but in their promotion of connection and goodwill.

4

Diversity and Social Positions

Diversity is a challenge for empathy. In general, the greater the diversity, the more difficult it is for empathy to bridge differences. At the same time, empathy is one of the most powerful means available for supporting diverse social inclusion and community cohesion. Embedded in the challenges and possibilities of empathy are tensions over differences and inclusion. Responsible and effective empathy requires recognizing important interpersonal and social differences, so that the person empathizing with another or with another group does not overlook the significance of histories, situations, and desires that make another’s experience different from the person’s own. The person empathizing simultaneously needs to recognize shared concerns and vulnerabilities to draw the necessary connections for social inclusion. It is this tension that suspends like a web a dynamic empathy that is always responding to situations and the people involved. The history of the United States is filled with failures of empathy that were later addressed in part through greater extensions of empathy. This history is important to recognize for what it can impart about the potential failures and successes of empathy and also for how the recognition of this history is itself part of the process of social empathy as people work to understand the histories of other groups and how those bear upon present experiences. Widespread interpersonal and institutional histories of disenfranchisement, segregation, and oppression in the United States, histories that remains active in many ways, are critical to recognize for social inclusion, precisely because so many people have been socially excluded for so long. Empathy works best for social inclusion when it acknowledges historical and current practices of social exclusion. Social exclusion is often produced by relatively powerful groups and institutions that benefit from the exclusion. Empathy also is affected by social positions and the exercise of power. The relationship between empathy, social standing, social power, and different social groups can be complicated. Research has shown that people in positions of power have less of an emotional response to another’s suffering and demonstrate less compassion, likely due to power-related differences and decreased motivation to affiliate or connect with the suffering other (van Kleef et al. 2008). Relatedly, people in lower social positions demonstrated greater compassion for others, making class a predictor of empathy (Stellar et al. 2012). There are multiple explanations for divergent concerns for the well-being of others based upon the respondent’s social standing. Perhaps it is that those in greater

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positions of power simply can ignore the suffering of others of lower positions because those others do not much affect the lives of the powerful; whereas people in lower positions must be more attuned to the thoughts and feelings of others, perhaps especially the powerful, because the actions of those others have a greater bearing on their lives. Or maybe those in lower positions of power have greater personal experience with suffering, are more aware of the histories and circumstances that contribute to suffering, and so are more attentive to the suffering of others based upon their personal experiences. It also could be that those in lower positions of social standing understand themselves to have more in common with others in disadvantaged positions and relate through those commonalities; while people in more powerful positions do not see themselves as having much in common with those in less powerful positions, perhaps from an inability or a disinclination to recognize commonalities with the disadvantaged. Indeed, in a study comparing pride and compassion, pride was shown to increase perceptions of similarities with strong others and decrease perceptions of similarities with relatively weak others (Oveis et al. 2010). When people in power are determined to treat less powerful others as means rather than ends, such as in making strategic and organizational decisions that will affect the lives of many others, it may benefit those more powerful people in a material way to not consider the realities of the lives of the less powerful, to socially exclude them. Finally, perhaps people who have suffered, such as those in positions of diminished social power, simply have learned to care more about suffering in general, having experienced it firsthand. Greater empathy alone is not a full answer for social inclusion across diverse groups and social standings. Although some studies have shown that being the target of perspective taking can generate positive feelings of inclusion (Goldstein et al. 2014), the social power differences in empathy also risk reinforcing negative perceptions of oneself and one’s group. Empathy can closely resemble pity, and pity tends to be felt by the more powerful for the less so. Psychologists Jackie Vorauer and Matthew Quesnel (2016) found a distinct difference between the effects on minority group members of being the target of empathy versus being the target of perspective taking from members of more powerful social groups. Because of the power dynamics of empathy, especially as it approaches pity, those minority group members who were targets of empathy came away from the encounter with a negative sense of their own group’s social standing. This might be reinforced by the heightened social standing felt by the dominant group members who expressed empathy, since they were in a position to empathize with the subordinate group, reinforcing the dominant group’s social standing. By contrast, because being the target of perspective taking is more often associated with positions of power – as the less powerful need to attempt to take the perspectives of the more powerful whose decisions affect them – those minority group members who were targets of perspective taking by dominant group members did not come away with such negative opinions of their own group’s standing. The differences in these studies highlight the importance of how empathy and perspective taking are determined and differences between the effects of both moves. The important feature to note here is how power dynamics and social hierarchies are always already tied up in empathic encounters,

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by individuals and by groups, and need to be recognized, especially because diversity and group identities are tied up in the same dynamics. Furthermore, efforts to improve social inclusion and intergroup relations can backfire in the long term if they do not address structural inequalities (Zaki and Cikara 2015). In her study of empathy and race and focusing on racial impersonators, literary scholar Alisha Gaines (2017) notes that interpersonal empathy often fails to note institutional and structural features of racism and treats racism as a personal rather than social issue. Efforts to employ empathy for the purposes of social inclusion amid and across differences need to be aware of the power dynamics at play and their potential effects. Those efforts should use empathy as a means to address causes of inequalities and barriers to inclusion rather than treat empathy as an end in itself.

4.1

Intercultural Empathy

Much like interpersonal empathy, social inclusion with people from the same cultural groups is relatively easy, because people with the same cultural background tend to have shared understandings, values, and experiences, as compared to people from more diverse cultural backgrounds. Empathy across similar cultural backgrounds may be called intra-cultural empathy. Intra-cultural empathy is easier and less important for social inclusion than is intercultural empathy. One of the challenges of intercultural empathy is differences in assumed understandings and shared concepts. The meaning of specific emotions, which are always based upon situations and values, may differ in one cultural context to the next. The same is true for situational perspectives, interpretations of history, and ideas of future possibilities, as these all differ depending upon cultural context or, as noted by Ratcliffe (1999) earlier, by differing cultural logics. Rhetorical scholar Peiling Zhao (2012) recognizes the tendency of the dominant group in a moment of intercultural empathy to remake the subordinate group according to the dominant group’s imagination. The subordinate group then is transformed to mirror the emotions and perspectives projected by the dominant group while the views of the dominant group are left unchecked and, if anything, reinforced in the process. Zhao recommends instead an “intersubjective empathy” that is more mutual in requiring all parties involved to reflect upon their emotions in their exchange, recognize the subjectivity of the other, acknowledge differences and similarities, and allow for self and other to be transformed in the experience of their encounter. Intercultural empathy is supported through reflective practice. People’s empathy for diverse others can increase with meaningful exposure to others and other perspectives, specifically when that exposure is based in collaboration rather than conflict and allows for recognizing commonalities and differences. Everyday interactions and conversations with people of diverse backgrounds foster intercultural empathy. The likelihood of these interactions is diminished as social groups are segregated due to class, ethnic or racial background, religion, political affiliations, and the myriad other forms of group identification. Efforts need to be made to bring more diverse social groups into interaction. As is the case with empathy broadly,

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intercultural empathy should be understood not as a point of achievement but as an ongoing effort.

5

Biases and Barriers to Empathy

The most significant liability of empathy is bias. People most readily empathize with others most like themselves. The more that somebody is different from somebody else, or the more that some group is different from the social groups another identifies with, the more challenging the empathic reach. Hoffman (2000) divides empathy biases into two types: “familiarity bias” and “here-and-now bias” (p. 197). Familiarity bias simply means that people empathize with those most familiar to them, such as family members, friends, and others like themselves. Empathy also is likely to be more accurate when there is greater familiarity because people understand best those others who are most like themselves. The more significant the differences, the more likely the adverse effects of biases, and the less accurate empathy might be. One way to help reduce familiarity bias in any group or organization is to incorporate a greater diversity of empathizers with familiarities across a wider range of experiences and identities. Hoffman’s (2000) second type of bias, the here-and-now bias, is based upon the importance of proximity for empathy. Because automatic systems of empathy are based upon observing the situation and feelings of another, such as when another is in pain, people are more likely to empathize with those who are nearer and more readily observed. The perspectives and feelings of more remote others are less likely to receive as much empathy and are easily neglected. Hoffman (2000) proposes a useful cognitive trick for using familiarity bias to increase empathy for less familiar others. He suggests what he describes as “multiple empathizing” in which the empathizer thinks of a family member or close friend in a position similar to that of the person who is being empathized with (p. 297). For example, if a person is attempting to empathize with somebody who was recently fired from their job, that person might imagine if one of their friends had been fired from their job and how their friend would feel. This type of substitution empathy, by placing a more familiar person in the position of a less familiar one, risks losing accuracy because the more familiar person may have experiences, interests, and resources very different from the less familiar other. The process gains in affective power, however, and makes more salient the imagined perspectives and feelings of another who otherwise might not be extended empathy. It is critical that people engaged in intentional efforts of empathy attempt to check their biases. If they are aware of familiarity and here-and-now biases, they can be on guard against faulty assumptions and pay closer attention to the perspectives and feelings of others. Similarly, in efforts to check here-and-now biases, would-be empathizers can work to include individuals from groups that are not immediately apparent. At its best empathy can function as a kind of dialogue with another so that the participants check their understandings and perceptions against each other, which is an additional way to guard against the liabilities of empathic biases. If biases are left unchecked, empathy can work as a force of social exclusion. Empathy can lead

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people to focus on the feelings and perspectives of those most like themselves, those who are readily available, which in effect excludes those unlike themselves and not readily available. The dual potentials of empathy, as a force for social inclusion and social exclusion, are always at play. An unchecked or uncritical empathy also risks remaking the other in the image of the empathizer. As Dennis Lynch (1998) observes, in order to place oneself in the shoes of another, the other first has to be removed from their shoes. Self-focused empathy unaware of its own biases risks erasing or remaking the other so that empathy is not an exercise in understanding the perceptions and feelings of another so much as a look in the mirror.

5.1

Blame, Atomism, and Dehumanization

Because empathy depends upon a willingness to recognize commonalities – common vulnerabilities, desires, and shared meanings – among oneself and others, ways of thinking that block that recognition act as barriers to empathy. Foremost among these is the fundamental attribution error, in which people downplay the role of situations in the actions of others and over emphasize the role of innate individual qualities, such as personality. This allows people to blame the unfortunate for their misfortunes, for example, while viewing themselves as the type who would not make such poor decisions, even if they might emphasize the role of situational factors when explaining their own decisions. Individual blame significantly impedes empathy. Philosopher Martha Nussbaum (2001) argues that the appraisal that the sufferer does not deserve their sufferings is a necessary condition of compassion, which functions much like empathy. Literary and cognitive humanities scholar Mark Bracher (2013) relates the fundamental attribution error to the faulty cognitive schema he identifies as “autonomism,” defined as leading “one to perceive people’s character, and not their circumstances, as the chief cause of both their behavior and their life outcomes” (p. 35). Bracher continues, “It leads people to continually conclude that poor and marginalized individuals and groups are responsible for their inferior stations in life and that people who have attained success deserve full credit for their good fortune” (p. 35). He locates the autonomy schema at the core of the American Dream and in dire need of correction with a situationism schema that fully recognizes the role of situational factors in determining behaviors and life outcomes. When people resist blaming others for their misfortunes, they create possibilities for empathy and inclusion by recognizing how everybody is affected by their environments. For the purposes of empathy and social inclusion, an additional faulty schema identified by Bracher is atomism, or the idea that people operate as entirely discreet individuals in constant competition with one another. As Bracher writes, The atomism schema magnifies interindividual and intergroup distinctions and obscures our inherent sameness and solidarity with others, blinding us to the fact that each person is practically, psychologically, and ontologically overlapping and interwoven with others, such that the welfare of one person directly affects and is affected by the welfare of the others. (p. 103)

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The alternative to atomism is a solidarity schema that recognizes the deep similarities and interconnectedness of people. An individual’s welfare depends upon the welfare of others. Such a schema reinforces a sense of the self-other overlap mentioned earlier that recognizes shared vulnerabilities, potentials, and a significance to one another. Many of the moves against empathy target an idea of inherent sameness, especially in terms of shared potential for suffering, as is evident in efforts to dehumanize others for purposes of social exclusion, oppression, and violence. When successful, dehumanization works to sever empathy by making individuals or group others something less than human. In doing so, dehumanization also delegitimizes the suffering of those others, because the suffering of nonhumans is deemed to matter less. Recognizing suffering is another of Nussbaum’s (2001) conditions of compassion. Delegitimizing the suffering of others, including that of nonhuman animals, has allowed people to use others for their own ends. Dehumanization and objectification often work together as powerful forces against empathy and social inclusion. Sometimes people employ these tactics themselves because it is in their personal interests not to empathize with others or because empathy makes too many demands on them. There are many ways people benefit from processes of dehumanization and social exclusion. Purposeful practices of empathy are all the more important in these situations.

6

Conclusion: Extending Empathy

To conclude, it is worth highlighting two important dynamics of empathy for social inclusion. Both play on the idea of extending empathy. The first emphasis is the work of extending empathy, as something that people do, as purposeful action that requires reflective efforts. Some modes of empathy, such as mirroring and affective contagion, occur automatically at moments of social engagement (Hoffman 2000). But empathy cannot be left to these automatic processes. The most important modes of empathy for social inclusion require intentional effort. People need to adopt a growth mindset for empathy. Automatic empathy can easily break down when relied upon in challenging environments and in the face of significant group and social differences. When people believe that empathy is an ability that can be practiced and developed, they are more willing to attempt to empathize in challenging situations, to empathize across differences, and to listen to the emotional stories of people from different racial groups (Schumann et al. 2014). If people believe that empathy is a skill that can be developed, they are more likely to work at empathizing and to try to develop that skill. Second, extending empathy is a larger collective action. The continuing extension of empathy widens the circle of social inclusion as the perspectives and feelings of more and diverse groups are given due consideration. Emphasizing extending empathy in this respect highlights the ongoing work and progress toward greater social inclusion. Within the extension of empathy there remains space for differences and disagreements, as social inclusion is not social homogeneity. Indeed,

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homogeneity works against inclusion, as the most meaningful social inclusion is one that embraces differences while reinforcing equitable consideration and engagement. The boundaries of social inclusion continue to be pushed past home group identifications, beyond regional and national borders, and further to include future generations and nonhuman animal who are also implicated in what people presently do. Empathy provides a mechanism to help drive this greater effort of social inclusion.

References Batson, C. D. (2011). Altruism in humans. New York: Oxford University Press. Blankenship, L. (2019). Changing the subject: A theory of rhetorical empathy. Louisville: Utah State University Press. Bloom, P. (2016). Against empathy: The case for rational compassion. New York: HarperCollins. Bracher, M. (2013). Literature and social justice: Protest novels, cognitive politics & schema criticism. Austin: University of Texas Press. Coplan, A. (2011). Understanding empathy: Its features and effects. In A. Coplan & P. Goldie (Eds.), Empathy: Philosophical and psychological perspectives (pp. 3 18). Oxford: Oxford University Press. DeStigter, T. (1999). Public displays of affection: Political community through critical empathy. Research in the Teaching of English, 33(3), 235 244. Gaines, A. (2017). Black for a day: White fantasies of race and empathy. University of North Carolina Press. https://doi.org/10.5149/northcarolina/9781469632834.001.0001. Goldstein, N. J., Vezich, I. S., & Shapiro, J. R. (2014). Perceived perspective taking: When others walk in our shoes. Journal of Personality and Social Psychology, 106(6), 941 960. https://doi. org/10.1037/a0036395. Greene, J. (2014). Moral tribes: Emotion, reason and the gap between us and them. New York: Penguin Books. Hoffman, M. L. (2000). Empathy and moral development: Implications for caring and justice. Cambridge, UK: Cambridge University Press. Jaggar, A. (1989). Love and knowledge: Emotions in feminist epistemology. In A. Jaggar & S. Bordo (Eds.), Gender/body/knowledge: Feminist reconstructions of being and knowing (pp. 145 171). Brunswick: Rutgers University Press. Lanzoni, S. (2018). Empathy: A history. New Haven: Yale University Press. https://doi.org/10. 2307/j.ctv5cgb7s. Leake, E. (2018). “Should you encounter”: The social conditions of empathy. Poroi, 14(1). https:// doi.org/10.13008/2151 2957.1265. Lynch, D. A. (1998). Rhetorics of proximity: Empathy in Temple Grandin and Cornel West. Rhetoric Society Quarterly, 28(1), 5 23. https://doi.org/10.1080/02773949809391110. Neff, K. D. (2003). The development and validation of a scale to measure self compassion. Self and Identity, 2, 223 250. Nussbaum, M. C. (2001). Upheavals of thought: The intelligence of emotions. Cambridge Univer sity Press. https://doi.org/10.1017/cbo9780511840715. Oveis, C., Horberg, E. J., & Keltner, D. (2010). Compassion, pride, and social intuitions of self other similarity. Journal of Personality and Social Psychology, 98(4), 618 630. https://doi.org/ 10.1037/a0017628. Ratcliffe, K. (1999). Rhetorical listening: A trope for interpretive invention and a “code of cross cultural conduct”. College Composition and Communication, 51(2), 195 224. https://doi.org/ 10.2307/359039.

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Schumann, K., Zaki, J., & Dweck, C. S. (2014). Addressing the empathy deficit: Beliefs about the malleability of empathy predict effortful responses when empathy is challenging. Journal of Personality and Social Psychology, 107(3). https://doi.org/10.1037/a0036738. Segal, E. (2018). Social empathy: The art of understanding others. Columbia University Press. https://doi.org/10.7312/sega18480. Singer, P. (2011). The expanding circle: Ethics, evolution, and moral progress (Rev ed.). Princeton: Princeton University Press. Slote, M. (2007). The ethics of care and empathy. New York: Routledge. https://doi.org/10.4324/ 9780203945735. Stellar, J. E., Manzo, V. M., & Kraus, M. W. (2012). Class and compassion: Socioeconomic factors predict responses to suffering. Emotion, 12(3), 449 459. https://doi.org/10.1037/a0026508. van Kleef, G. A., Oveis, C., van der Löwe, I., LuoKogan, A., Goetz, J., & Keltner, D. (2008). Power, distress, and compassion: Turning a blind eye to the suffering of others. Psychological Science, 19(12), 1315 1323. https://doi.org/10.1111/j.1467 9280.2008.02241.x. Vorauer, J. D., & Quesnel, M. (2016). Don’t bring me down: Divergent effects of being the target of empathy versus perspective taking on minority group members’ perceptions of their group’s social standing. Group Processes & Intergroup Relations, 19(1), 94 109. https://doi.org/10. 1177/1368430215586273. Zaki, J., & Cikara, M. (2015). Addressing empathic failures. Current Directions in Psychological Science, 24(6), 471 476. https://doi.org/10.1177/0963721415599978. Zhao, P. (2012). Toward an intersubjective rhetoric of empathy in intercultural communication: A rereading of Morris Young’s Minor Re/Visions. Rhetoric Review, 31(1), 60 77. https://doi.org/ 10.1080/07350198.2012.630959.

Abundance, Resilience and Trust A new framework for social inclusion

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Dimensions of Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Material Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Social Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Spiritual Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Experience of Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Scarcity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Vulnerability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Fear . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 The Scarcity Cycle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Healing Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Trust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Resilience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Abundance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 The Abundance Cycle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Poverty and exclusion co-exist in a dynamic interaction driven by two foundational myths: the myth of scarcity and the myth of autonomy. These two myths lead to maladaptive responses that create a self-reinforcing negative cycle of scarcity, vulnerability, and fear. Material scarcity increases our vulnerability, and the awareness of our vulnerability leads to fear which invokes responses that increase scarcity and vulnerability rather than alleviate it. To break this cycle, it is necessary to shift the narrative and nurture a new understanding of self and community based on the principles of inter-dependence and abundance. This D. Cook (*) Canadian Poverty Institute, Ambrose University, Calgary, AB, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_12

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can facilitate the emergence of an alternate self-reinforcing positive cycle of abundance, resilience, and trust. Trust increases resilience and enables the mobilization of latent resources, contributing to increasing abundance which in turn increases trust – in the material world and in each other. The critical intervention point is in the re-establishment of trust relationships to overcome the trauma associated with scarcity. Such trust requires an understanding of universal vulnerability in opposition to the myth of autonomy, grounded in a renewed sense of social solidarity and the primacy of the common good. Through this process it is possible to heal the wounds inflicted by a scarcity-based socioeconomic system and nurture the emergence of an alternate society where poverty cannot take root. Keywords

Poverty · Scarcity · Vulnerability · Resilience · Abundance

1

Introduction

In 2018, Canada adopted an official definition of poverty described as “the condition of a person who is deprived of the resources, means, choices and power necessary to acquire and maintain a basic level of living standards and to facilitate integration and participation in society” (Government of Canada 2018, p. 7) This is a marked shift from common understandings of poverty that focus primarily on income, or the lack of it. What is important in this new definition is the focus on the conditions of choice, power, integration, and participation as constitutive of poverty. Indeed, there is a deep inter-relationship between poverty and inclusion (or exclusion). To be poor is to be powerless, and to be powerless is to be poor. When one has choice and power, one has the capacity to participate in community life and to be integrated into all aspects of society: economic, social, and political. Conversely, those without power (social, economic, or political) have little opportunity to influence the decisions that affect them and so are left with fewer choices, effectively excluded from meaningful participation in community life. An important question is posed by this inter-relationship: in which direction does causality run? Are people excluded due to their lack of economic resources, or do they lack resources because they have been marginalized and excluded? This is a critically important question as it will profoundly shape the approach we take to addressing poverty. If poverty is primarily a matter of income, then providing income (or opportunities to acquire it) should lead to increased participation and inclusion. If, on the other hand, the lack of income arises from the condition of exclusion, we must tackle poverty the other way around. If so, the lack of income or resources is a symptom of poverty, not its defining condition. This chapter suggests that the lack of economic resources (income) is in fact a symptom of poverty, not its existential root. Rather, the lack of resources arises from deeper structures of exclusion that are the result of maladaptive responses to a distorted worldview. This distorted worldview is the product of two pervasive myths that have shaped modernity: the myth of scarcity and the myth of autonomy. The intersection of

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these two myths has shaped a narrative that informs our economic, social, and political environment to such a degree that they maintain the status of orthodoxy. This orthodoxy underlies all attempts to address poverty from both the right and the left. Unravelling it, however, may provide a new way forward that can light a different path leading us beyond the narrow confines of traditional understandings of poverty.

2

The Dimensions of Poverty

The way we measure poverty reflects our understanding of it. The common understanding of poverty is based on notions of a “poverty line,” based on income thresholds, of which one falls above or below. The standard international definition of poverty, for example, is the low-income measure (LIM) which determines a person to be poor if they earn 50% or less of the median income of the country (Noel 2017). For many years Canada relied on a similar measure, the low-income cutoff (LICO) which established income thresholds for different family sizes based on their expenditures for basic needs relative to the average. This has since given way in Canada to a new measure, the Market Basket Measure (MBM), which determines whether a person is poor based on their income relative to the cost of a basket of goods and services (Noel 2017). What each of these measures share is a focus on income as the defining element of poverty. As a social worker and community development practitioner, I have had the opportunity to hear many people describe their experience of poverty, such as the following: Emptiness, destitute, hopelessness, helplessness, sadness, darkness, lost, no identity, no self esteem, coldness, ashamed, no voice, no family, no grandchildren, no smiles, no privacy, no laughter, no happiness this is what living in poverty means.

Teaching an advocacy course with people living in shelters or at risk of homelessness, the participants developed the following definition: Lack of complete physical, mental and social well being. Not having the resources necessary to live as everyone else in society or compete fairly with them.

In other situations, I have also spoken with people who might be considered middle class, not in or on the margins of poverty, who used similar descriptors such as unjust, lonely, divided, scary, mean, stressed, depressed, inequality, and unhealthy. It is interesting that the picture of poverty painted by those from relative affluence closely mirrors the experience of someone living in poverty as captured in the preceding quotes. What is instructive about all of these descriptions and definitions that emerge from peoples’ experience of poverty (current, past, or perceived) is the fact that income is not central to them. Rather, we are left with a holistic account of an experience with significant material, social, and spiritual dimensions. Material poverty involves a lack of the material or financial resources to thrive. Social poverty involves being isolated and lacking the supports needed to be resilient. Spiritual

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poverty involves a lack of meaning or purpose in life. Deep poverty exists at the confluence of these three dimensions.

2.1

Material Poverty

Material poverty lies at the base of Maslow’s hierarchy of needs. According to Maslow (1943), the foundational needs of human beings are our physiological needs such as air, food, water, rest, and health, as well as our need for security which includes shelter, safety, and stability. Upon these two layers, the rest of our wellbeing is constructed. Material poverty thus exists where there are deficiencies in these two layers. Such deficiency includes both their actual absence (such as lack of food or housing) and the ability to obtain them. For most people, the ability to obtain the material resources necessary for basic human functioning revolves around income, whether earned or provided as replacement income by the state. We can thus assess material poverty on the basis of these two dimensions: the presence (absence) of the material aspects of well-being as well as the income required to acquire them. Thus, we have developed intricate measures of deprivation, such as the Oxford Multidimensional Poverty Index (OPHI 2018), which focuses on the presence of critical aspects of well-being, or on the presence of income relative to the cost of acquiring those assets, such as Canada’s new Market Basket Measure (MBM). While these measurements benefit from conceptual clarity, there are inherent value judgments built into them that require examination. If we have established a threshold above or below which one is in poverty, what are the qualitative aspects of life that need to be present if one is considered to be above such a line? Is it enough to simply meet our most basic physiological needs, or does a condition of “non-poverty” imply something more? This question moves from the abstract to the concrete when we attempt to establish what should be in a basket of goods and services whose affordability determines whether one is in or out of poverty. The new Canadian Market Basket Measure, for example, includes items such as cell phone and Internet service. An alternate measure of poverty, the “basic needs poverty line,” developed by the conservative Fraser Institute, has a much more restrictive list of items necessary for what it refers to as “subsistence” (Sarlo 2008). The difference between mere subsistence and the idea of thriving introduces an important distinction between absolute and relative poverty. Absolute poverty implies a minimum condition below which one’s essential material (physiological and security) needs cannot be met and which threatens one’s long-term survival. Relative poverty, however, recognizes that a person’s well-being is a function of their place in a social and economic order. What may be considered poor in one context may be considered affluent in another. What is important is not the absolute material conditions in which people find themselves, but the choice and power they exercise in society given their surrounding environment. Material well-being then is not an absolute demarcation line of deprivation but related to and indicative of one’s social position. When viewed through this lens,

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it is not possible to discuss material poverty in isolation from the social context of the individual.

2.2

Social Poverty

The fact that material poverty cannot be discussed in isolation from its social context brings us to the second dimension of poverty, social poverty. This corresponds to the next tier in Maslow’s hierarchy, social needs, which he characterizes as the need for love, belonging, and inclusion. In the descriptions of poverty above, it is in fact its social dimension that is prominent, much more so than its material aspects. What seems to be so deeply traumatic about poverty is the experience of being disconnected from others and from one’s community. Statistically, income poverty and isolation are intimately connected (Eckhard 2018; Samuel et al. 2018). Those who are living alone are much more likely to experience income poverty than those living in families. At the same time, those who live in income poverty are also more likely to experience feelings of isolation and loneliness. Once again, the direction of causality in this relationship is important. Are people more likely to experience poverty because they are isolated, or are they more isolated because they are poor? Evidence would suggest both are true, and this can lead to a vicious circle of ever deepening poverty. People may be more likely to experience poverty when they are isolated and also have a harder time rising out of it. When one is isolated, an important protective buffer against long-term stress or crisis is absent. This may include access to material or financial supports from friends, family, and neighbors, but also emotional and moral support as well as access to information and formal supports (Samuel et al. 2018; Bernier and Meinzen-Dick 2014). At the same time, once one is in a condition of poverty, an effect of that is increased isolation (Eckhard 2018). This may be due in part to instrumental challenges that inhibit participation in social life, such as the cost of transportation, childcare, or user fees for certain services. There are also increased time challenges people experience, particularly those who may be working multiple part-time jobs with irregular shifts. Not only does this interfere with a person’s ability to participate in their community, it also interferes with family relationships. A recent study of precarious workers in Toronto found that such workers were less likely to have partners, or if so, to have children, and that their work schedules interfered with their ability to manage home and work life or have active involvement in their community (Lewchuk et al. 2013). Poverty can also breed isolation due to the reduced sense of security people experience. This may include economic security as people are less likely to take risks given their financial situation (Jachimowiz et al. 2017). It may also include a reduced sense of physical security if people are living in neighborhoods characterized by crime and violence which limits their willingness to leave their homes or allow their children to do so. Poverty may also reduce a person’s level of trust based on their intimate experiences with others which further serve to disconnect people from the community around them (Ross 2011).

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At a deeper level, though, poverty can interfere with one’s ability to participate in social life due to the stigma attached to poverty. While many programs and services offer fee subsidies for low-income participants, asking for such assistance often involves a sense of shame which inhibits people’s willingness to do so. Further, there is great social risk in being identified informally as “poor,” which can occur due to status markers such as clothing, transportation, housing, or neighborhood. A participant in a workshop I facilitated about the experience of poverty stated: I hate celebrations, because cars of young men come driving by looking for prostitutes, and then they yell at me and call me names, just because I live in a poor area.

The stigma attached to poverty serves to separate the poor from the non-poor and thus reinforces socially the artificial lines of demarcation embodied in income thresholds. This stigma infuses itself in NIMBY (Not In My Backyard) responses to the location of affordable housing, for example. Taken to its extreme, the visibly poor – typically those unhoused and living rough on the streets – are subject to ridicule, active exclusion from public space and even violence. Perhaps as troubling for those living in absolute material deprivation as homelessness is the invisibility that they experience as most people fail to acknowledge their existence, preferring to avert their eyes when encountering each other on the street.

2.3

Spiritual Poverty

The stigma attached to poverty brings us to the deepest level of poverty and the heart of the first myth that distorts our worldview. The stigma of poverty is powerful because it poses a challenge to our identity. “Poor” is a label applied to people, but one people rarely apply to themselves. To be poor implies a condition of vulnerability and dependence, and with it a sense of failure. Such an experience of vulnerability, dependence, and failure arises out of our own and others’ comparison against an ideal type: the autonomous individual. Modern society is premised on the notion of the autonomous individual who is an independent, rational, self-interested, competitive seeker of utility. Rationality is the basis of choice and lack of choice is one of the characteristics of poverty. Implicit in this understanding therefore is the perceived irrationality of the person who is poor. Indeed, those who are poor are often blamed for their poor choices which are assumed to have impaired their ability to successfully compete in society for their fair share of resources, leading to their poverty (Smith 2019). Note how the language of competition has infused even the definition of poverty created by those in poverty themselves, as referenced at the outset of this chapter, which stated that poverty involves “not having the resources necessary to live as everyone else in society or ‘compete’ fairly with them.” Such a notion is very much an individualist one which sees people in competition with each other, limited perhaps by factors that impede their ability to compete. The fact of competition, however, is rarely challenged. This has led to a significant emphasis in poverty reduction work on improving the competitiveness of the individual to improve their ability to effectively gain access to material resources.

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This view of humanity, however, introduces a deep spiritual poverty for all as it fundamentally contradicts what each of us innately understand about the human condition. That is, that we are not in fact independent and that our deepest material, social, and spiritual needs are not met individually but in community. Thus, it is that Aristotle famously declared that man is by nature a political animal, that is, a creature intended to live in a polis (political community). To be outside of community was seen to be something less than fully human. Indeed, it is in community that the higher-order needs on Maslow’s hierarchy are met. Further, the ends implied in this competitive individualistic worldview are those of utility, relating largely to the material world. One competes for resources in order to meet one’s basic needs or to demonstrate power and status through the process of material accumulation. Our identity, therefore, becomes bound up with the material evidence of our competitive ability. Failure to successfully compete in this arena undermines not only our material and social well-being but also our spiritual one as our identity and purpose in life are challenged. This is not just a challenge for those experiencing poverty, but for all of us who’s self-identify, life purpose, and relationships are distorted by this worldview. Wolfgang Hoeschele, in his book The Economics of Abundance (2010), describes this form of spiritual poverty, questioning why many people cannot be happy even at a very high level of consumption. In response, he likens consumption to an addiction stating: An alcoholic’s life cannot be improved by supplying (them) with more alcohol, and an obese person’s life cannot be improved by providing (them) with unlimited food. These people’s lives can only be improved by curing them of their addictions, and so it is with “consump tives” or “pleonexics”, who think they are suffering from scarcity even if they are consuming endless commodities. What these people are lacking is not the addictive substance, but other resources, both material and non material, needed for dealing effectively with the challenges of life. . . (p. 143)

Poverty, therefore, is a multidimensional construct with material social and spiritual dimensions, which have at its core a distorted worldview based on the idea of the independent, rational, competitive individual. To the extent that we all experience the effects of this distorted worldview in the way we approach each other in daily life, poverty can be considered a tear in the social fabric that affects us all. When viewed this way, the question of poverty lines become irrelevant as poverty exists along a continuum in multiple dimensions on which each of us find ourselves. Recognizing that each of us experiences a particular form of poverty is the starting point to moving beyond the divisions of “us” and “them” that reinforce the competitive, individualistic paradigm that lies at the root of our poverty.

3

The Experience of Poverty

As a multidimensional condition with material, social, and spiritual aspects, the deepest form of poverty is the one that encompasses all three of these dimensions. These dimensions are manifested in the experience of poverty, articulated clearly in

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the voices of those who live in it. This experience can be described as one of scarcity, vulnerability, and fear.

3.1

Scarcity

Scarcity currently drives every aspect of our social and economic relationships. A foundational principle of economics is that there are limited resources and unlimited needs. The function of an economy (and society) is to best distribute scarce resources for maximum benefit. This scarcity, it is believed, drives competition which is the engine of innovation and growth, particularly in modern market-based capitalist economies. The ability of scarcity to produce this outcome is predicated on a particular view of the nature of human beings, as articulated above, that is, beings that are inherently independent, rational, self-interested, and competitive seekers of utility. The idea of scarcity is, therefore, hardwired into the very fabric of society and operates synergistically with a particular understanding of the nature of humanity. In considering the nature of scarcity, it is important to distinguish between natural and created (relative) scarcity (Daoud 2011). Natural scarcity exists where there are not enough resources to fill the needs for which that resource is required. With the exception of famines or drought, rarely do we encounter examples of such natural scarcity. Rather, scarcity is most frequently created; that is, the resource is not limited by its physical quantity but rather by socially and institutionally constructed limits. Such scarcity can be of two kinds. The first form of created scarcity arises from the establishment of boundaries that limit access to a resource that is otherwise plentiful. The principal way this is achieved in a market economy is through the mechanism of price which restricts access to goods and services based on the ability to pay. A good example of such scarcity is food. In 2019, almost 1.1 million Canadians accessed emergency food assistance from a food bank (Food Banks Canada 2019), while, that same year, the total value of food wasted in the country exceeded $31B, accounting for almost half (40%) of the food produced in the country (Gooch et al. 2014). Clearly, the problem of food scarcity is not the lack of food, but the institutional barriers we have erected around it. The problem of scarcity arises in part from the particular way the market allocates resources. A fundamental economic concept is that of “effective demand,” which states that demand only exists in an economic sense when the person demanding a good or service has the ability to pay for it. If there is no ability to pay, the demand (and hence the demander) is invisible. The result of this is that economic production is skewed away from the satisfaction of certain needs toward the production of others based on the economic capacity of certain segments of the population. Thus, it is that we continue to build large luxury houses even as around 35,000 people are homeless across Canada on any given night, and over ¼ of a million people experience homelessness at some time throughout the year (Gaetz et al. 2016). Once again, the scarcity challenge affecting the availability of housing is not the physical

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resources required but the way in which we grant access to those resources and to whom. The second form of created scarcity arises from the introduction of new wants or needs. This is the innovative aspect of scarcity that drives new ideas. Yet, it can also skew resources away from productive uses and reinforce patterns of exclusion. In his book Scarcity and Modernity, Nicholas Xenos (1989) traces the evolution of scarcity, noting the role of conspicuous consumption where demand is driven not by need but by the quest for status. What may have begun as production to meet an actual need over time can devolve into production for the sake of itself, with artificial scarcities created to maintain the status value of the object. Alternatively, once a product is introduced over time, a dependence on that product may arise, creating a need that did not previously exist, introducing the possibility of scarcity. The recently emergent need for cell phones and their ever newer versions is such an example. To the extent that the institutional boundaries we establish around the acquisition of, and status ascribed to, goods and services correspond to existing patterns of inequality, the dilemma of scarcity takes on oppressive aspects. The sociologist Adel Daoud (2011) noted that once it is understood that scarcity can be manufactured, it can then also be manipulated to maintain the status and privilege of those in power. For example, many professions are highly regulated to ensure that standards of quality are maintained. Yet, the failure to recognize the credentials of those with foreign credentials serves to exclude large swaths of people from those professions even as the country experiences a shortage of them. The resulting scarcity works to the benefit of those in the profession whose salaries remain correspondingly high due to the skills shortage the regulations have created. The fact that such professional and economic lines of demarcation also often fall along racial and cultural lines reinforces deeper patterns of exclusion. The material dimension of scarcity thus interacts with its social dimension due to the power relationships inherent in it. This social dimension is rooted in the very idea of scarcity as it necessarily implies that social relations are competitive given that there is not enough to go around. As such, life becomes a zero sum game that limits our ability to conceive of meaningful cooperation and broad bands of solidarity. At best, it reinforces exclusionary group solidarities that pit group against group in place of, or in addition to, person against person competition. Consequently, social capital is degraded as the individual competitive instinct mitigates against the development of strong bonding capital, while the group competitive instinct mitigates against the development of strong bridging capital. The competitive aspect inherent in a scarcity-based economy inevitably leads to the second dimension of the experience of poverty – vulnerability.

3.2

Vulnerability

Vulnerability, like poverty itself, exhibits material, social, and spiritual dimensions. Materially, growing levels of inequality and the scarcities inherent in that have left

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many of us in precarious financial situations. Lacking adequate savings and with an increasingly frayed social safety net, the conditions of scarcity we have created jeopardize our ongoing ability to meet our needs, especially in the event of a crisis. Social vulnerability arises from the fact that those lacking strong social ties are missing an important buffer against shocks and stresses (Samuel et al. 2018). It also arises, however, from the way in which we conceive of vulnerability itself which hints at a deeper spiritual vulnerability. If we examine the roots of poverty, we find that there are four primary sources of vulnerability. First, there are individual characteristics (human capital) that leave us vulnerable, such as our level of skill or education. Second, where we are in the life stage matters; those in life stages characterized by greater conditions of dependence, or those providing care to them, are more likely to experience poverty. Third, the quality of our social connections affects our vulnerability as those who lack strong social connections have an increased risk of poverty. Lastly, the systems in which we are embedded create rules that introduce or reinforce scarcities and relationships of exclusion and oppression (Fig. 1). These critical vulnerabilities operate as long-term (chronic) stressors that leave individuals and communities exposed to shocks. Shocks may be personal such as job loss, illness or disability, family breakdown, or unexpected financial expenses or loss. Shocks may also be system-wide such as natural disasters, recessions, or public

Fig. 1 Poverty vulnerability framework

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health emergencies. The impact of such shocks on individuals and systems will be determined by the presence of the vulnerabilities identified above. Extreme vulnerability exists where these four primary factors overlap. Although vulnerability is multi-faceted, it is typically its individual dimension that we focus on to the exclusion of deeper structural causes. As the individual exists within the context of these other structural forces, it is virtually impossible to separate individual vulnerabilities from those related to life stage, social capital, or systemic factors. The obsessive focus on individual factors belies the fact that all experience some vulnerability to poverty, allowing us to neatly segment the population into categories of “poor” or “vulnerable.” We further subdivide those deemed poor or vulnerable into the “deserving” or “undeserving” based on judgments about individual culpability. Such divisions degrade social capital and inhibit the development of broad social solidarity. Yet, while all are vulnerable, those with the least power and choice experience the greatest vulnerability. As power and choice follow racial, cultural, and gender lines, so too do patterns of extreme vulnerability, reinforced by structures of power. This allows the stigma of poverty to attach to not only to discrete individuals, but also broad social groups which divides us even further, divisions which can be manipulated and exploited by those with power. The inordinate focus on individual vulnerability aligns with our understanding of the rational, autonomous, and competitive individual, and vulnerability is anathema to that construct. As a society, we prize independence and hold up as our model the “selfmade man or woman.” Yet, just as we struggle to find examples of natural scarcity, we similarly struggle to find examples of those who are actually self-made and independent. Indeed, it is virtually impossible to consider this. As Fineman (2010) notes, each of us passes through stages of dependence in our lives, either as children or, later, presumably in our senior years. Many others experience periods of dependence brought on by illness, disability, or economic disruption. Not only do we pass through stages of dependence in life, our independence is never ours alone, but the result of being embedded in social and economic systems that support us and on whose shoulders we stand, benefitting from the achievements of previous generations. The cultural expectations of independence, however, are strong, even as we recognize innately our own vulnerability. This sense of vulnerability introduces a cognitive dissonance where our values of independence and rationality collide with the reality of a world in which we are inter-dependent yet increasingly cut off from those with whom we share that inter-dependence. What we are left with is either a crippling sense of self-blame or a withered sense of empathy all fueled by the underlying dilemma of scarcity. This leaves us spiritually vulnerable to the possibility of manipulation – either to be manipulated or to the temptation to manipulate others – both maladaptive responses to the fear inherent in our vulnerable condition.

3.3

Fear

For those who live in poverty, fear is an ever-present reality (Fell and Hewstone 2015). There is the fear of hunger, homelessness, shame and judgment, or having

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one’s children removed by the state. Yet, beyond those living in immediate circumstances of poverty, fear permeates our whole society due to the unchallenged assumption of scarcity that increases our vulnerability, along with the demand to independently overcome those vulnerabilities over which we have very little control. This manifests itself in a fear of poverty as we intuitively understand that poverty is a possibility that confronts us all due to our vulnerability. There is, in fact, a clinical fear of poverty called peniaphobia which has two aspects. There is, first, the fear of falling into poverty. This may reflect people’s intuitive understanding of their own material and social vulnerability. However, it may also reflect the possibility that the experience of poverty is far more prevalent than point-in-time measures suggest. A survey of residents in Calgary recently found that, although the poverty rate tends to hover around 10% over time, close to 40% of those surveyed reported that they have experienced poverty at some point in their life. Further, assuming that each of those has at least one close or intimate relationship, it is highly probable that most of us have either experienced poverty or are closely connected to someone who has. This may explain why the words people use to describe poverty are remarkably similar regardless of their socioeconomic position and why there is such deep fear of it. The second aspect of peniaphobia is the fear of poor people. This fear is manifested not only in the tendency to avoid persons who are visibly homeless on the street but also in NIMBY responses to neighborhood affordable housing projects (Homeless Hub undated). It is somewhat paradoxical that, given the assertion that a large proportion of us may have experienced poverty, there would be a corresponding fear of poor people. I suggest this fear arises out of the intuitive understanding of our universal vulnerability and an attempt to assuage that fear. Perhaps such fear serves as a distancing measure providing a false sense of safety, based on the assumption that poverty is related to individual characteristics and choices. If I convince myself that poverty is the fault of the “other” who is unlike me, I can be comforted in the belief that I am less vulnerable to poverty due to my difference from the “other.” A fear of the poor may simply be a projection of our own inner fear arising from our vulnerability. In a workshop I facilitated with shelter residents, one participant described poverty as “a condition of constant, never-ending trauma.” While it is true that poverty often results from trauma, and that those in poverty may be more likely to experience trauma, her reflection was deeper, asserting that the experience of poverty is itself a form of trauma. Interestingly, one of the long-term effects of trauma is disrupted attachment, the inability to establish close relationships with others. If the experience of poverty is potentially widespread, it is conceivable that the effects of trauma are pervasive throughout society, including our inability to form the kind of deep relationships necessary to facilitate strong bonds of solidarity and collective action. In his book Deepening Community, Paul Born (2014) notes that people have several different responses to fear and uncertainty. The first is to withdraw. In the context of poverty, this could be the result of the fear of scarcity, of others, or of the stigma associated with poverty. In any case it increases the isolation that accompanies poverty. A second response is that of aggression. This response establishes

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strong bonds of solidarity in one’s narrowly defined group in opposition to those deemed to be “other” and the cause of one’s fear. Both are maladaptive responses that serve to exacerbate rather than ameliorate our vulnerability by eroding our stock of social capital. This effectively limits our access to resources while deepening the divides that our scarcity-based competitive economy creates, and this increases the likelihood of our social exclusion. Yet, this speaks to an even deeper fear. If we ultimately derive meaning from our identity in relationship to others, this sense of scarcity, vulnerability, and fear erodes such meaning. This is especially problematic given that our identities are bound up in our ability to control our lives and outcomes, as independent beings. Ultimately, the collision between this atomistic worldview and our awareness of our scarcities and vulnerabilities leads to a deeper fear of meaninglessness as we become increasingly disconnected from those things that bring deep meaning and purpose to human existence.

3.4

The Scarcity Cycle

The forces of scarcity, vulnerability, and fear exist in a dynamic interaction that creates material, social, and spiritual poverty for all. The belief in scarcity increases our vulnerability, and our awareness of that vulnerability creates fear which invokes maladaptive responses that further increase our scarcities and vulnerabilities. Fear ultimately drives the experience of poverty for both the poor and non-poor alike, resulting in compromised relationships that arise from a scarcity-based socioeconomic system. Efforts to heal poverty must therefore start at the level of such compromised relationships and work their way up to its material manifestations, not the other way around.

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Healing Poverty

The way we speak of poverty matters. There have variously been efforts to end poverty using the language of battle (the famous “war on poverty”). Alternatively, there are also numerous strategies to “fix” poverty by focusing either on its structural dimensions or the characteristics of those needing to be “fixed” as though either were a machine whose components could be tweaked to produce a different outcome. Other attempts have sought to “eradicate” poverty as though it was akin to a disease infecting the population. Each arises out of a particular worldview and definition that inform the actions necessary to address it. If we conceive of poverty as a wound rather than a problem or a disease, this leads us to an entirely different language and approach. Whereas things that are broken must be fixed, wounds require instead a process of healing. This process of healing must begin at the point of wounding, which are the disrupted relationships that arise from a scarcity-based socioeconomic system. Such a process of healing needs to address the two myths that underlie: the myth of scarcity and the myth of the autonomous individual. To help us move beyond these myths, it is necessary to envision a reality in which they are not operative. If the experience of poverty is one of scarcity, vulnerability, and fear, to imagine its opposite would be to envision one of abundance, resilience, and trust. And the starting point is the condition of trust.

4.1

Trust

There has been much written in recent years about the perceived erosion of trust in Western society (Barbalet 2019; Edelman 2020; Uslaner 2000; Sztompka 2000). This has many roots, including the rise in inequality, economic globalization, and the increasing complexity of society and the challenges confronting us. Ross (2011, p. 289) argues that the level of trust in a society is influenced by the degree of threat, resource scarcity, and sense of powerlessness, noting that “mistrust makes sense where threats abound, particularly for those who feel powerless to prevent harm or cope with the consequences of being victimized or exploited.” Underlying this lack of trust are the foundational myths of scarcity and autonomy that lead us to individualistic competitive responses which do not facilitate the establishment of trust. A starting point that can create the conditions of trust, therefore, is a redefinition of human identity. While this may seem a daunting, perhaps unrealistic endeavor, I believe that the cracks in our current self-understanding are evident and growing. What may be required is to simply state what people intuitively feel and give permission for that new identity to emerge. While the narrative of the past several hundred years has been that of the independent, rational, competitive seeker of utility, this self-understanding has been constrictive and against which many have long chaffed. The current reaction against “facts” and distrust of objective information hints at this chaffing as people sense that technocratic society has left them disempowered, and technical rationality has been unable to answer the deeper meanings we seek in life. Further, we have also

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come to recognize that economic behavior is not entirely rational, as we are often driven as much by emotion as objective choice, as the emerging field of behavioral economics asserts. Moreover, the growing epidemic of loneliness speaks to the deep need for human connection that has always been central to human flourishing. There is, finally, the growing realization that unlimited material accumulation has consequences for the sustainability of our biophysical environment and that it has failed to on its own improve our mental, emotional, or spiritual well-being. Rather, it has left us increasingly divided and alone. Perhaps what we each intuitively know and need permission to say is that at our core we are inter-dependent rather than independent beings, as much spiritual or emotional as rational, whose innate instinct is to cooperate rather than compete, and whose fundamental purpose is to seek meaning rather than utility. This selfunderstanding may prepare fertile ground for the emergence of new trust relationships that can heal the wounds of poverty. There are two types of trust that are important to consider. Strategic trust is the trust that exists between people for the purposes of transactional or cooperative relationships. This form of trust is based on our experience with the person to whom one is extending trust and assumes some instrumental qualities in the other such as regularity, reasonableness, competence, and efficiency (Sztompka 2000, p. 27). As it is based on our experience with others, it does not necessarily extend to strangers. Trust that spans the divide of “otherness” is called generalized trust which assumes that people in general are trustworthy. Such trust is required between groups of people as well as between people and institutions. Trust building work needs to include efforts to rebuild both strategic and generalized trust at all levels. Rebuilding trust requires providing opportunities for people to re-engage with each other in safe environments. While Paul Born discussed the two responses people exhibit to uncertainty – withdrawal and aggression – he also noted a third response: coming together. This, he argued, is accomplished through a process of gradually deepening relationships beginning with the sharing of stories and enjoying one another, to the practice of hospitality and the welcoming of strangers, leading eventually to the ability to work together. It is through this process of social capital development that the critical possibility for collective action emerges. In his overview of the history of human evolution, Sapiens, the historian Yuval Harari (2014) argues that the key factor leading to the ascendency of Homo sapiens over Neanderthals, and thus the underlying key to the success of the human species, was not our ability to compete, but to cooperate which itself was only possible due to the foundation of trust. Without trust, cooperation is impossible and without cooperation the advantages humans enjoy as a species vanish. Trust lies at the feet of it all.

4.2

Resilience

If the experience of isolation and disconnection is central to our experience of vulnerability, then reconnecting meaningfully with others offers the path to resilience. Resilience involves the ability to adapt, recover, and thrive in the face of

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chronic stress or crisis. The vulnerability factors described above constitute the chronic stresses that leave one vulnerable to sudden crises that can plunge a person into poverty. To be resilient means to have the capacity to thrive in the midst of such stress and recover from sudden shocks that might occur. The idea of thriving as central to resilience brings us back to the original question about poverty and whether it is enough to survive at the bottom of Maslow’s pyramid, or whether the bar should be set higher. If we understand poverty to be a holistic condition with material, social, and spiritual dimensions, then the bar does need to be set higher, and resilience must encompass these dimensions as well. When considering resilience, we must distinguish between the resilience of an individual and the resilience of the systems within which a person is embedded as each impact the other. Research on the resilience of individuals has identified two key factors that are relevant here. The first is a person’s sense of coherence, that is, their ability to derive meaning from the circumstances that they experience and to have some sense of control over it (VanBreda 2001). The second important resilience factor is the networks of support that surround people (Ungar 2018). These two factors are inter-related as networks of support can foster a sense of control while also contributing to a sense of meaning inasmuch as people derive their identity from broader social constructs. While individual resilience addresses the specific vulnerabilities experienced by people independently, system resilience focuses on the ability of the social and economic systems that support people to adapt to change and recover from shocks. Individual and system resilience are in dynamic interaction as resilient individuals contribute to resilient social and economic systems, while resilient systems buffer individuals against shocks and stresses. But resilient systems are more than the sum of a group of resilient individuals; systems that are resilient have their own unique properties. Research has found that resilient systems are highly integrated and flexible, with a degree of redundancy which provides great adaptive capacity. Critically, resilient systems also exhibit a high degree of diversity, with strong social capital where power is distributed through horizontal networks rather than vertical hierarchies, and there is a great degree of cooperation (see Zolli 2012; Rodin 2014). At both the individual and system level, fear-based responses lead us away from actions that produce greater resilience. For individuals, the strategies of withdrawal or aggression reduce access to the networks of support that are needed, ultimately reducing our ability to control outcomes in a complex environment where collective rather than individual action is required. At the system level, fear-based responses often lead to attempts to tighten control and accountability, while eliminating redundancies to root out inefficiencies. This is intended to improve the competitiveness of the system and its component parts. Yet, what resilience requires is the opposite approach: to focus on cooperation rather than competition, to embrace redundancy and share rather than concentrate power. For both individuals and systems, relinquishing individual control is necessary in order to create the conditions for true resilience. And this requires trust.

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Abundance

Poverty comes at a cost. It is estimated that the cost of poverty in Canada is between $72.5 and 86.1B annually due to increased costs associated with health care and the criminal justice system, as well as lost productivity and intergenerational costs (Government of Canada 2010). Similarly, the cost of homelessness alone has been estimated to cost the Canadian economy roughly $7B due to the costs associated with providing emergency shelter and community supports, as well as emergency services and health-care costs, among others (Gaetz et al. 2013). Additionally, the Conference Board of Canada estimated in 2015 that the cost of not recognizing the qualifications of foreign trained professionals cost Canada between $13.4 and $17B due to under-employed human capital (Grant 2015). Clearly, scarcity breeds scarcity. Repurposing and mobilizing such resources for more productive purposes is the path from scarcity to abundance and trust provides the way forward. So far, we have discussed trust as residing primarily in the relationships people experience with each other, either as individuals or in their institutional roles, relating primarily to the social dimension of poverty. Yet, trust has a deeper aspect. To truly achieve resilience, trust must also extend to both the material and spiritual dimensions which lead to the realm of abundance. Trust in its material sense refutes the foundational economic maxim and myth that there are scarce resources and unlimited needs. A trust-based response asserts the opposite: that resources are abundant and our needs in fact quite limited. Turning first to the question of unlimited resources, we reiterate the earlier position that there are very few situations of true natural scarcity. Scarcity arises, rather, from the institutional barriers that limit access to resources. And, paradoxically, we erect those barriers out of a fear of scarcity. The answer to scarcity, therefore, lies in our willingness to trust in its opposite and act accordingly to remove those barriers. It is through this act of trust in others and in the abundance of the material world that the latent resources present around us can be mobilized both as individuals and collectively as a community. At an individual level, trust facilitates stronger and more diverse social connections. The ensuing sense of support increases resilience by improving access to information and resources that otherwise remain unavailable. This effect extends beyond access to resources, however, by reducing the psychological impacts of scarcity that impair our decision-making ability (see Warren et al. 2001) and improving the ability to make important long-term decisions (see Jachimowiz et al. 2017), thereby increasing an individual’s pool of resources over time. Of importance is not only the quantity and quality of social connections but also their diversity (Bernier and Meinzen-Dick 2014). When previously disconnected networks become linked, the pool of potentially available resources expands. This includes not only material resources but also the resources of ideas that can lead to new responses to challenges. At a deeper level, however, the strengthening of trust relationships and the establishment of bonds of social solidarity increase our capacity for collective action that allows us to tackle challenges that we are unable to address individually.

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At the level of community, strong social connections can facilitate the productive use of latent resources that cannot be employed through the formal mechanism of the market. The community development theorists John McKnight and Peter Block (2010) argue that modern society has produced what they term the “incompetent community”. Our communities have become incompetent, they suggest, as they are increasingly reliant on professional systems for functions families and communities were once able to perform on their own. Once we become reliant on those systems, scarcity ensues as price establishes barriers to access. There exist within community abundant skills and resources to be shared which the market either replaces or cannot bring into productive use. This is the underlying assumption of asset-based approaches to community development. The principle of abundance also applies to our economic system. Research shows that companies that pay a living wage, for example, tend to outperform those that seek to increase their profits by minimizing labor costs (Thompson and Chapman 2006). Similarly, organizations that invest in and trust their employees, where power is shared and employees are enabled to take risks and make decisions, will outperform those with strict lines of vertical accountability in a culture of control (Covey 2006). Organizations that exhibit the principles of resilience described above, to which trust is central, will experience greater organizational resilience, thereby contributing to longer-term resilience of our social and economic systems in the face of shocks and stresses. Further, companies that adopt a “shared value” approach to business have been found in the long run to outperform those focused strictly on the creation of shareholder value (Porter and Kramer 2011). Shared value asserts that true value arises when the organization creates social value in the community in which it operates through strategies such as ethical procurement, environmental stewardship, and community investment. By improving the conditions in which the company operates its operations themselves improve. This is the premise of the new emerging world of purpose-driven organizations such as B-Corps or social enterprises. Overcoming the fear responses engendered by scarcity and mistrust, therefore, leads ultimately to greater productivity and an expansion of the pool of resources available to us individually and collectively. Our service systems require a similar reorientation. Efforts to rationalize the social welfare system in order to increase efficiency and reduce costs ultimately do the opposite. Increased specialization has led us away from addressing the holistic needs of individuals, thereby reducing our overall effectiveness. This is exacerbated by the competitive environment service organizations find themselves in, wherein they compete against each other for limited funding and clients, mitigating against the kind of inter-agency cooperation that would facilitate a more effective holistic approach to meeting peoples’ needs. This has left the system fragmented, imposing further costs on those needing to access it, either by posing barriers that leave their needs unmet or by imposing unnecessary costs, such as time and transportation, born by people who attempt to navigate through it. As such, the collective resources present in this complicated system remain underutilized. The overall capacity of the system cannot be enhanced by further

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attempts to rationalize it, but rather by increased coordination and integration. The increased trust between organizations that might emerge from a cooperative rather than competitive environment would allow service providers to better collaborate and share information to manage the multiple complex needs people experience. This will require a new funding model that empowers organizations and their workers to make decisions based on the best interests of the client, addressing their holistic needs, rather than on strict outcome-based performance criteria based on narrowly defined specialized problems. This further requires an internal shift of perspective, as organizations need to trust and empower staff to make decisions as well as those seeking their services. By reducing the structural barriers to trust, the overall performance of the system is enhanced leading to better outcomes and greater social and economic abundance. At the individual, economic, and service system levels, therefore, it is possible to mobilize the latent resources abundantly present around and within us. This improves our collective resilience, not only be increasing access to presently available resources, but also by creating the possibility for the development of new ones. Individuals, organizations, and systems that are connected and empowered, with a high degree of diversity and trust, are capable of taking risks leading to innovation. As we confront an increasingly complex world with new unforeseen challenges, this ability to take risks and innovate will be critical to our resilience. This new understanding of abundance is already nascently present in existing international human rights frameworks. The International Covenant on Economic, Social and Cultural Rights, for example, states that human beings have a right to an adequate standard of living, work and fair wages, food, clothing and housing, physical and mental health, education, participation in cultural life, and rest and leisure. This affirms an abundance orientation as it would be impossible to guarantee a right unless it was possible to attain such rights for all, the opposite of scarcity. Moreover, the universal nature of human rights moves us necessarily beyond the divisive “us/them” narrative engendered by a scarcity paradigm, embracing instead an understanding of our common humanity and dignity. These are profoundly spiritual claims resting on a foundation of trust in both the material world and each other.

4.4

The Abundance Cycle

Whereas the myths of scarcity and autonomy create the conditions for a selfreinforcing negative cycle of scarcity, vulnerability, and fear, challenging these myths can establish instead a positive self-reinforcing cycle of abundance, resilience, and trust. Increased trust leads to the conditions necessary for individual and collective resilience which in turn enables the productive mobilization of resources that increases abundance, contributing to further increases in trust and resilience. The critical point of intervention in this cycle is trust building – in self, others, and the material world around us. The work of ending poverty therefore becomes an activity

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of healing ourselves and our relationships in order to establish the conditions necessary for a world where material, social, and spiritual poverty cannot take root.

5

Conclusion and Future Directions

Poverty is a multidimensional condition with material, social, and spiritual dimensions, manifested in the experience of scarcity, vulnerability, and fear. It can then be defined as a social wound characterized by compromised relationships arising from a scarcity-based socioeconomic system. The roots of poverty lie at the confluence of two foundational myths: the myth of scarcity and the myth of the autonomous individual. Material, social, and spiritual scarcity arises from a belief that there is not enough to go around. This belief leads us into a competitive paradigm that pits us against each other as individuals, groups, organizations, and sectors with profound material, social, and spiritual implications. The critical impact of that paradigm is a breakdown in trust and the ability to effectively work together. This heightens our sense of vulnerability and leads to various maladaptive responses designed to decrease our vulnerability and fear but in reality exacerbate them. Moreover, these responses are incapable of meeting our deepest human needs which are for meaning and community. Overcoming this scarcity cycle requires the re-establishment of trust as a foundational act. Trust increases our resilience which in turn increases our access to the resources abundantly present around us. This approach effectively inverts Maslow’s hierarchy of needs by asserting that what he deemed as higher-order needs are in reality the foundation upon which meeting the more foundational physiological and security needs are based.

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The act of trust building provides not only access to material and social resources, but it is also a profoundly spiritual act. It is spiritual to the extent that it expresses faith – in the future, in each other, and in the material world around us to provide adequately for our well-being. Such a radical reorientation requires us to embrace an alternate self-understanding. The modern concept of human beings as independent, rational, competitive seekers of utility suits well the paradigm of scarcity at great material, social, and spiritual cost. It is possible that we are now moving beyond such a limited self-understanding to rediscover ourselves as inter-dependent, spiritual, and cooperative seekers of meaning. It is necessary now to establish structures that are better aligned with this emergent self-understanding. Such structures will produce greater individual and collective resilience and in so doing mobilize our abundant latent resources, thereby overcoming the condition of scarcity and the fear that accompanies it. These new structures will embrace a concept of universality that affirms our common humanity and fundamental dignity. Emergent concepts of human rights that include social, economic, and cultural as well as political rights provide a nascent framework that can support new forms of social, economic, and political organization. Asset-based approaches to community development that affirm the primacy of community are important building blocks. At the economic level, new models of shared value approaches to business, including the emergence of social enterprises and cooperatives, as well as the latent sharing economy, provide hints of a future economics of abundance. And, finally, hesitant moves toward greater service integration and a recognition of the importance of holistic approaches to human flourishing show promise. The work of nurturing this new reality into being is healing work. It is the process of healing the social wounds inflicted on us by the false narratives of scarcity and autonomy. Such narratives are at the root of a multidimensional condition called poverty, a condition that affects each of us as we all experience the wounds it engenders. Consequently, the work of healing poverty is the work of healing all of our fractured relationships. In so doing it moves us beyond dichotomous understandings of “poor” vs “non-poor” that reinforce scarcity-based competitive understandings of the human condition. Rather, the healing work required nurtures instead a renewed self-understanding that meets our true material, social, and spiritual needs. Overcoming poverty thus requires us to create a new healing narrative based on the principles of abundance, resilience, and trust (ART). Such healing is indeed more of an art than a technical exercise, embracing our creativity and spiritual impulses as much as our rational abilities. This calls each of us to the exciting work of healing ourselves as we simultaneously heal the world around us. Ending poverty therefore is not fundamentally about changing the material conditions of a group of people defined as poor. Rather, it is about moving beyond the tendency to divide people into groups of rich and poor to begin with. Moving beyond such distinctions requires a radical reorientation that embraces an interdependent as opposed to an independent self-understanding. This shift is made possible by a related reorientation from a worldview based on the belief in scarcity to one that acknowledges a condition of abundance. Both shifts require the

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re-establishment of deep bonds of trust that transcend the divisions imposed by the ideologies of scarcity and autonomy and which can lead us toward a condition of deep inclusion.

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McKnight, J., & Block, P. (2010). The abundant community: Awakening the power of families and neighbourhoods. San Francisco: Berrett Koehler Publishers. Noel, A. (2017, November 9). How do we measure poverty? Policy Options. OPHI. (2018). Global Multidimensional poverty index 2018: The Most detailed picture to date of the world’s poorest people. Oxford Poverty and Human Development Initiative, University of Oxford. Porter, M., & Kramer, M. (2011, January February). Creating shared value. Harvard Business Review. Rodin, J. (2014). The resilience dividend. New York: The Rockefeller Foundation. Ross, C. (2011). Collective threat, trust and the sense of personal control. Journal of Health and Social Behaviour, 52(3). Samuel, K., Alkire, S., Zavaleta, D., Mills, C., & Hammock, J. (2018). Social isolation and its relationship to multidimensional poverty. Oxford Development Studies., 46(1), 83 97. Sarlo, C. (2008). Measuring poverty in Canada. Vancouver: Fraser Institute. Smith, N. (2019, July 30). Stop blaming America’s poor for their poverty. Bloomberg News. Available [online]: https://www.bloomberg.com/opinion/articles/2019 07 30/u s economy per sonal bad behavior isn t what causes poverty Sztompka, P. (2000). Trust: A sociological theory. Cambridge: Cambridge University Press. Thompson, J., & Chapman, J. (2006). The economic impact of local living wages. In Briefing paper. Washington, DC: Economic Policy Institute. Ungar, M. (2018). Change your world: The science of resilience and the true path to success. Toronto: Sutherland House. Uslaner, E. (2000, Winter 2000 2001). Producing and consuming trust. Political Science Quarterly, 115(4), 569 590. VanBreda, A. (2001). Resilience theory: A literature review. Pretoria: South African Military Health Service. Warren MR, Thompson PJ, Saegert S. (2001) “The Role Of Social Capital In Combating Poverty.” In: Saegert S, Thompson PJ, Warren MR Social capital and poor communities. New York: Russell Sage Foundation Press. Xenos, N. (1989). Scarcity and modernity. London: Routledge Press. Zolli, A. (2012). Resilience: Why things bounce back. New York: Free Press.

Cultural Safety and Social Inclusion

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Cultural Safety as a Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 A Point of Departure: Continuing Colonialism and Decolonization . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Cultural safety is an approach to healthcare delivery that was developed in New Zealand in the 1980s. Currently, cultural safety is the preferred approach in healthcare education and healthcare practice, in New Zealand, Australia, and Canada, and is increasingly gaining attention in the USA. This chapter reviews the concepts of cultural safety and explores some of the complementary areas between cultural safety and social inclusion. Cultural safety and social inclusion both relate to health and human services professional practice, organizational settings, and policy concerns. Cultural safety has been more heavily focused within healthcare education and services while social inclusion has had a more expansive reach, with application at a societal level and across more domains, such as in housing, employment, community safety, and poverty. A key point of departure between cultural safety and social inclusion is the foundation of a decolonizing perspective in the cultural safety model. Cultural safety focuses on decolonizing healthcare practice and systems through critical self-reflection. This necessarily centers on the impacts of colonization on Indigenous populations with an understanding that learning from this frame develops a critical consciousness that enables culturally safe care and environments with an inclusive underP. B. Thompson (*) Psychology Department, Pennsylvania State University, Media, PA, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_13

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standing of culture. Directions for future research and practice implications are discussed. To achieve health equity, working toward culturally safe social inclusion is proposed. Keywords

Cultural safety · Decolonization · Social inclusion · Critical reflective practice

1

Introduction

Cultural safety is an approach to healthcare delivery that was developed in New Zealand in the 1980s (Ramsden 2002; Wepa 2015). Cultural safety is the preferred approach in healthcare education and healthcare practice, in New Zealand, Australia, and Canada, and is increasingly gaining attention in the USA (Darroch et al. 2017; Kurtz et al. 2018). A central focus of cultural safety is on decolonizing healthcare practice through critical self-reflection. This has necessarily centered on the impact of colonization on Indigenous populations with an understanding that learning from this frame develops a critical consciousness that enables culturally safe care and environments across an inclusive understanding of culture. While the practice of cultural safety was originally focused on healthcare delivery, it is growing in its application to health and human services more broadly (Browne et al. 2009; Gerlach 2012). This chapter reviews the concepts of cultural safety and social inclusion and their relevance to achieving health equity. Cultural safety and social inclusion are complementary concepts particularly as they both relate to health and human services professional practice, organizational settings, and policy concerns. Cultural safety has mainly been concerned with the interpersonal elements of the provision of healthcare and human services. However, the scope has broadened through the creation of culturally safe environments and consideration of the structural elements of service delivery that are critical for culturally safe practice and the goals of health equity. Cultural safety has been more heavily focused within healthcare education while social inclusion has had a more expansive reach, with application at a societal level and across more domains, such as in housing, employment, community safety, and poverty (see Commission on Social Determinants of Health (CSDH), 2014; Taket et al. 2014a).

2

Cultural Safety as a Concept

Cultural safety, or kawa whakaruruhau, is a concept that was developed in the 1980s by a Maori midwife (Ramsden 2002) in New Zealand. The concept is defined by the Nursing Council of New Zealand (2011, p. 7) as: The effective nursing practice of a person or family from another culture, and is determined by that person or family. Culture includes, but is not restricted to, age or generation; gender; sexual orientation; occupation and socioeconomic status; ethnic origin or migrant experi ence; religious or spiritual belief; and disability.

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The nurse delivering the nursing service will have undertaken a process of reflection on his or her own cultural identity and will recognize the impact that his or her personal culture has on his or her professional practice. Unsafe cultural practice compromises any action, which diminishes, demeans or disempowers the cultural identity and well being of an individual.

This early and original definition of cultural safety focused on nurses and nursing practice and the broadening of the concepts of culture and identity. Cultural safety was originally described as a three-step process including cultural awareness, cultural sensitivity, and cultural safety. Cultural awareness, the first step, involves understanding that there are differences between people. Cultural sensitivity involves self-exploration and consideration of one’s impact on others. In this step, difference is legitimated. Finally, cultural safety involves the “safe” interactions with “others,” as defined by them. Taylor and Thompson-Guerin (2019) describe the cultural safety process as more cyclical in nature with the added element of critical self-reflection as a key part of the cultural safety process. In this conception, cultural safety is a lifelong, ongoing process. The chapter cycles back through awareness of cultural differences, sensitivity to those differences and the potential impacts of cultural differences, and understanding the responsibility and actions required to create safety for oneself and others (Taylor and Thompson-Guerin 2019). As humans evolve through experiences of cultural understandings, they may find that they become increasingly at ease with these experiences, that is, they may feel a sense of cultural ease (McConnochie et al. 2008). Ease is not just about being at ease with “the other” but understanding and being at ease with oneself. Cultural humility is another concept that is closely aligned with culturally safety practice. Tervalon and Murray-Garcia (1998) define cultural humility as a commitment to a lifelong process of learning and continuous self-reflection. Humility means being comfortable with not-knowing and recognizing power dynamics involved in healthcare practice. It is an interactive approach that requires an openness to learning through asking questions and not making assumptions. Cultural humility is a way of living that is often initially uncomfortable like a new pair of shoes, but becomes an automatic way of engaging, learning, and being. Cultural safety includes a set of strategies and guidelines for health or human service professionals when engaging with clients who are culturally different to themselves. Cultural safety suggests that to understand “culture” or ethnicity, or “race,” or any other difference between people, one needs to first look at oneself as culture-bearers and consider how one’s own culture and identity “fits” in the world (Gray et al. 2003). Through critical self-reflection, professionals learn to appreciate how their own identities impact the people with whom they come in contact. Additionally, through this process of critical self-reflection, it is recognized that culture is a dynamic, ever-changing process. Culturally safe practice requires professionals, organizations, and systems to be “regardful” of the identities of recipients of service rather than attempting to provide care and services “regardless” of identities that suggest “one-size-fits-all.” To treat someone “regardless” of their identity is akin to being “color blind” or “gender

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blind,” for example. Many people may embrace the idea of “I treat everyone the same,” but considering that phrase more deeply, it is obvious that everyone should not be treated the same because everyone is different. This aligns with the concept of “person-centered care.” According to the American Geriatrics Society (2016, p. 16), ““person-centered care” means that individuals’ values and preferences are elicited and, once expressed, guide all aspects of their health care, supporting their realistic health and life goals. Person-centered care is achieved through a dynamic relationship among individuals, others who are important to them, and all relevant providers. This collaboration informs decision-making to the extent that the individual desires.” Another important aspect of cultural safety is the consideration of “how” things are said and done, not necessarily just “what” is done when engaging with others who are culturally different. For example, a cisgender health professional might reflect on how they talk about gender with a transgender client and not only comply with their minimum requirements in the healthcare exchange such as documenting symptoms, diagnosing, and treatment. Healthcare practice and policies are generally focused on meeting particular requirements that fail to consider these elements in the healthcare exchange and how they relate to health outcomes and health equity. Perhaps the most unique contribution of cultural safety is that culturally safe professionals and organizations are required to consider how they can decolonize their practice, their organizations, policies, and systems. This aspect of cultural safety encompasses the need to recognize how power and histories of oppression and harm influence healthcare practice, organizations, and systems. These histories, however, are not only in the past but are also perpetuated throughout contemporary care practices, organizations, and systems (e.g., see Fortier and Hon-Sing Wong 2019; Haley 2020). At the interpersonal level, cultural safety requires professionals to recognize how power relations influence interactions, such as how language and terminology are used, to consider identities and to be aware of stereotypes and bias. Power relations can be seen in everyday public interactions, in workplaces, and in families. Understanding and recognizing power can include reflections on the intersections of privileges, such as those that might be experienced through race or ethnicity, gender, age, education, class, abilities, religions, and so on. When engaging with someone and you are the one with relatively more power, cultural safety asks to consider how recipients of care receive your interaction. They are the one to determine the appropriateness or the safety of the interaction. It is critical to recognize in this that power and privilege are not inherent or essentialized characteristics of individuals but are completely dependent on context. Taylor and Thompson-Guerin (2019) recommend various strategies to achieving culturally safe care. These include the importance of having conversations and for professionals to ask clients for information and clarification when the professional providing service does not know or does not understand and for them to consider how questions are asked. Another strategy of culturally safe care is to cultivate humility as it relates to professional practice and interactions. It is impossible to learn and understand everything about people, identities, and groups of people. This is appreciated, in part, through the process of self-reflection and recognizing diversity both within and between groups. The aim here is to move away from stereotyping

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and generalizing. While continually educating oneself about people, cultures, histories, and identities is strongly encouraged, it is also important to acknowledge that “being educated” or “informed” can lead to power imbalances. In summary, these principles are to: • • • • • • • • •

Provide care that is regardful of culture. Engage in dialogue – talk with recipients of care. Ask what clients want and how they want services to be provided. Be mindful of whose values are being valued. Reflect on power and privilege and the role of empowering others. Process is more important than outcomes. Continually ask yourself, “are my actions empowering or disempowering?” Examine the context for possible elements of racism or discrimination. Decolonize practice through examining language, assumptions, and behaviors.

More recently Curtis, Jones, Tipene-Leach, et al. (2019, p. 14) recommended a definition of cultural safety that broadens the Nursing Council of New Zealand definition to include organizations: Cultural safety requires healthcare professionals and their associated healthcare organisa tions to examine themselves and the potential impact of their own culture on clinical interactions and healthcare service delivery. This requires individual healthcare profes sionals and healthcare organisations to acknowledge and address their own biases, attitudes, assumptions, stereotypes, prejudices, structures and characteristics that may affect the quality of care provided. In doing so, cultural safety encompasses a critical consciousness where healthcare professionals and healthcare organisations engage in ongoing self reflection and self awareness and hold themselves accountable for providing culturally safe care, as defined by the patient and their communities, and as measured through progress towards achieving health equity. Cultural safety requires healthcare professionals and their associated healthcare organisations to influence healthcare to reduce bias and achieve equity within the workforce and working environment.

This definition expands the concept to include a broader scope of healthcare practice as well as the responsibility of organizations to create culturally safe environments and to measure progress toward health equity. Braveman, Arkin, Orleans, Proctor, and Plough (2017, p. 12) contend that “health equity means that everyone has a fair and just opportunity to be as healthy as possible. This requires removing obstacles to health such as poverty, discrimination, and their consequences, including powerlessness and lack of access to good jobs with fair pay, quality education and housing, safe environments, and health care.” This definition of cultural safety also reframes culture and identity in terms of both individual and organizational “biases, attitudes, assumptions, stereotypes, prejudices, structures and characteristics” (Curtis et al. 2019, p. 14). Inclusion of the concept of health equity stresses the importance of equitable health outcomes as a goal of culturally safe practice. Importantly, cultural safety involves a shifting of power to the recipient of care in determining whether care is safe and that the onus of change and accountability lies with the service providers and organizations.

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Curtis et al. (2019) recommend a number of core principles for culturally safe care. These include a focus on measurable health equity outcomes, centering critical consciousness and critical self-reflection at the levels of the individual, organization, and healthcare system, understanding power relationships and their historical and social contexts, and incorporating cultural safety into systems, structure, and policies as well as training and education environments. Curtis et al. (2019, p. 14) also suggest that healthcare organizations and regulators consider the following steps: • Mandate evidence of engagement and transformation in cultural safety activities as a part of vocational training and professional development. • Include evidence of cultural safety (of organizations and practitioners) as a requirement for accreditation and ongoing certification. • Ensure that cultural safety is assessed by the systematic monitoring and assessment of inequities (in health workforce and health outcomes). • Require cultural safety training and performance monitoring for staff, supervisors, and assessors. • Acknowledge that cultural safety is an independent requirement that relates to, but is not restricted to, expectations for competency in ethnic or Indigenous health.

3

Social Inclusion

There are many definitions of social inclusion (see Filia et al. 2018; Hunting et al. 2015; Taket et al. 2014a). It is worth exploring a few of these to get a sense of various elements that are emphasized and the implications for practice. For example, social inclusion is defined by the United Nations Educational, Scientific and Cultural Organization (UNESCO 2012) as representing an inclusive society where every individual has a part and an active role to play. Fundamental values of equity, equality, social justice, and human rights and freedoms, as well as on the principles of tolerance and embracing diversity, inform a socially inclusive society (Briggs and Harris 2017). Here, an emphasis on an aspirational vision of society is seen, while the following definition by Silver (2015) focuses on social inclusion as a relational process that functions at interpersonal and structural levels. Silver (2015, pp. 2–3) writes: My working definition of social in/exclusion is one of a multi dimensional, relational process of increasing opportunities for social participation, enhancing capabilities to fulfill normatively prescribed social roles, broadening social ties of respect and recognition, and at the collective level, enhancing social bonds, cohesion, integration, or solidarity. Social inclusion may refer to a process encouraging social interaction between people with different socially relevant attributes or an impersonal institutional mechanism of opening up access to participation in all spheres of social life.

Wright and Stickley (2013) reviewed literature relating to social inclusion and mental health. Social inclusion is often discussed in relation to poverty, mental health

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problems, education, and disabilities. While health and social care professionals certainly have a role in assisting service users to become full participants within society, the label of “excluded” or “in need of being included” may further stigmatize those with mental health problems (Wright and Stickley 2013, p. 79). Wright and Stickley (2013) conclude that there is a lack of clarity in the literature about the concepts of social inclusion and social exclusion, at least as they relate to mental health. They also discuss that the concepts can be easily confused and that other concepts, such as inequality and discrimination, may already encompass the concerns that these concepts are intended to be concerned with. Silver (2015) localizes understandings of social inclusion by linking it to the history and culture of various contexts. Silver (2015, p. 3) suggests that “the contextdependency of social inclusion is more than a question of labelling. Indeed, many synonyms – solidarity, cohesion, social capital, integration – are in use in different settings.” Silver (2015) goes on to argue that these labels and terms related to belonging, membership, and citizenship are connected to the histories and cultures of particular places. Constraints on individual choices and behaviors as well as social cleavages and collective identities are connected to these ideas that then become embedded in institutions. To understand the concept of social inclusion, it is useful to have an understanding of what is meant by social exclusion (Levitas et al. 2007; Popay et al. 2008; Smith and Chambers 2015). Social exclusion as a concept emerged in France in the 1970s in relation to those excluded from social insurance systems (Hayes et al. 2008). It was not long before the concept had spread through Europe, encompassing social and economic realms. Over time, the concept of social exclusion has taken on broader meaning including exclusion from cultural and political areas as well as social and economic. For example, Taket, Crisp, Graham, Hanna, and Goldingay describe social exclusion as “a complex and multi-dimensional process driven by unequal power relationships interacting across four main dimensions—economic, political, social and cultural—and at different levels including individual, household, group, community, country and global levels” (2014b, p. 7). They go on to describe social exclusion as involving the lack or denial of resources, rights, goods, and services, and a person’s inability to participate in relationships and activities available to most people. Social exclusion affects both the quality of life of individuals as well as the equity and cohesion of society as a whole (Taket et al. 2014b, p. 7). Both social inclusion and cultural safety have been discussed in terms of social, cultural, economic, and political arenas. They have both been conceptualized in relation to various levels, such as the macro-, structural, or institutional levels as well as the interpersonal or microlevels. Social inclusion and exclusion are often discussed in relation to one another and even used interchangeably or simultaneously (Briggs and Harris 2017). But social inclusion and social exclusion are not mutually exclusive or simply the inverse of each other; they can exist simultaneously and are interrelated concepts (Briggs and Harris 2017). This is similar to culturally safe and unsafe practice. For example, a health service may have some practices that are culturally safe, while others are not. At an individual level, professionals may in the same interaction engage in both safe

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and unsafe ways. This understanding is critical for services and professionals to understand if they are to move toward building safer and more inclusive practices, and ultimately toward health equity. Indeed, Edwards, Armstrong, and Miller (2001, p. 426) write that “there can be no social inclusion unless there is also social exclusion.” They argue that it is not practically achievable to eliminate social exclusion and that any differences are not possible if homogeneity is the aim, that is, for everyone to be the same. This also relates to concepts such as equality and inequality, normal and deviant behavior, being educated versus being uneducated, and so on. As long as social inclusion is promoted, they suggest awareness of difference and social exclusion is heightened. “We need to understand that non-exclusion is not the same as inclusion, and that we must avoid taking away the freedom of those who choose not to be included” (Edwards et al. 2001, p. 426). Cultural safety, conceptually, embraces this element, through acknowledgment and embracing difference. Specifically, cultural safety asks that individuals be treated in ways that are regardful of their differences, not regardless of those differences. In a similar vein, labeling individuals as “socially excluded” potentially creates further stigmatization and marginalization (Davies 2005). Is a person defined as “included” or “excluded,” or are institutions, organizations, or society as a whole “inclusive” or “excluding”? As it relates to cultural safety, recipients of care are not judged as it relates to the care they have received. This is a critically important shift. Care can be culturally safe or unsafe, as determined by recipients, but there is not an inherent issue with the provider of that care nor the recipient of care. Culturally safe or unsafe care is in the exchange or process and in the environment. How these concepts are used, linguistically, can potentially thwart efforts toward health equity. Similar to cultural safety, critical reflection has been discussed as an important part of social inclusion (Crisp et al. 2014). Crisp, Taket, Graham, and Hanna (2014) point out the role of critical reflection in disrupting the status quo of systems and structures that perpetuate inequalities. They contend that “professional practice can reinforce social inequalities, promoting the needs of professionals and institutions, and effectively excluding recognition of the needs of those individuals and communities whom they are supposed to serve. While it may occur by chance, inclusive professional practice often emerges in response to critical reflection about who is favoured by the systems and structures” (Crisp et al. 2014, p. 251). This reflection of “favor” may look like what many people currently call “privilege” and conversely “bias” among systems and services and how they play out at an individual or interpersonal level.

4

A Point of Departure: Continuing Colonialism and Decolonization

A question for the considerations of social inclusion and exclusion might be “included in what?” or “excluded from what?” From a cultural safety perspective, who determines whether someone is included or excluded? Or are the labels of inclusion and exclusion imposed by independent or “competent” and perhaps

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“benevolent” observers? (Briggs and Harris 2017). Gooding, Anderson, and McVilly (2017) write that social inclusion tends to be a top-down policy or practice, which can position the person(s) as a passive recipient. When it is said that a person is “being included,” it implies that someone else, typically a state-based service, is doing the including, rather than the person making active demands and contributions on an equal basis) (Daly and Silver 2008). Edwards, Armstrong, and Miller (2001) take a critical perspective of the concepts of social inclusion and exclusion, arguing that the “notion of inclusion relies on exclusions, some of which may be chosen and even desirable” (p. 417). They promote the need for examining the social inclusion agenda through a critical lens and in light of poststructuralist philosophy. From a decolonial lens, it is not enough to create spaces of inclusion or safety for the other, but to recognize the power of the colonial culture. This safety or inclusion cannot be enacted at the individual or interpersonal level but all need to see themselves as bearers of the continuing culture of coloniality. Cultural safety focuses on decolonizing healthcare practice and systems through critical self-reflection. This necessarily centers on the impacts of colonization on Indigenous populations with an understanding that learning from this frame develops a critical consciousness that enables culturally safe care and environments with an inclusive understanding of culture. Czyzewski (2011) discusses the importance of understanding colonialism as a determinant of health and the necessity of decolonizing policies and practices for health equity outcomes. Byrd (2011, p. 10) writes that inclusion/exclusion serves to perpetuate the harms of colonialism for American Indians: “inclusion is the very site of the colonization that feeds U.S. empire” (see also Steinman 2016, for a discussion of Indigenous resistance to colonialism). Chandanabhumma and Narasimhan (2020) propose an Applied Decolonial Framework for health promotion as a means to achieving social justice and health equity. Cultural safety, at its foundation, is intended to be a decolonizing approach to healthcare. It is not simply another term related to the “knowledge, skills, and attitudes” of health and human services professionals or simply another word for the slew of “diversity training” approaches such as cultural competence or cultural responsiveness. Conceptually, cultural safety provides a framework that legitimizes and honors difference and recognizes (rather than ignoring) the fact that healthcare structures and systems are colonial systems and that professionals and service providers are part of those systems. While elements of culturally safe practice may well be relatable to social inclusion, and correspondingly, culturally unsafe practice may bear relevance to social exclusion, in the middle of these dichotomous concepts is the critical concept of indifference. Mattering and indifference are drivers of culturally safe practices and systems whether society is socially inclusive or exclusionary. For a person to be socially included or excluded presumes an element of mattering (see Downton, Biondi, Fulwiler, Curtis, and Frederiksson 2019; Prilleltensky 2020). When someone is included or excluded, they matter, either way. If a health service or organization is safe or unsafe, it matters. However, the most damaging situation is when there is ambiguity or invisibility (see Blonk 2021 for more on invisibility, microrecognition, and hesitation).

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Consider someone who does not fit neatly into identity categories that typically define those who are marginalized or excluded. These categories are often created in response to systematic and identifiable inequities, outcomes, or oppressions. Ambiguity in interactions or systems can be felt or experienced as indifference. It is through indifference that there is impact. It is here that outcomes are affected. Indifference is, essentially, the opposite of mattering. But the ambiguity is a moving target, where one can never quite put a finger on it, and just when one thinks they may have figured it out, it moves, yet again. It is the amorphousness of racism, sexism, and other forms of discrimination or exclusion, of which the burden of defining is firmly laid on the victim. If people collectively continue trying to point it out, they fail to see the solution is in the three fingers pointing back at themselves— through critical self-reflection and the solidarity that is nurtured when people recognize themselves as simultaneously victims and perpetrators. The culture of coloniality necessarily includes an element of indifference as it originally emerged through the Doctrine of Discovery and notions of terra nullius. Professionals cannot simply become aware of the ways that practices or systems are unsafe or excluding and “correct” them through safe or inclusive practices and policies because the larger forces of coloniality are still at play. Attempting to define categories of marginalization, vulnerability, or those who are “excluded” is another function of colonialism that perpetuates the harm everyone is trying to heal and prevent. Theoretically, cultural safety is the only model that considers this important element.

5

Conclusion and Future Directions

This chapter has reviewed the concept of cultural safety and explored some of the complementary areas between cultural safety and social inclusion. A key point of departure between cultural safety and social inclusion is the foundation of a decolonizing perspective in the cultural safety model. In order to achieve health equity, working toward culturally safe social inclusion is proposed. Research has shown that concepts such as cultural safety and social inclusion (and other related concepts) are often not well defined in policy, leading to difficulty with implementation (Grant et al. 2013). While the literature for cultural safety is emerging and there seems to be a more consistent understanding of the concept, it risks being confused and used interchangeably with other concepts such as cultural competence, sensitivity, responsiveness, humility, and others. In contrast, there are vastly different definitions of social inclusion throughout the literature. Critiquing and clarifying the meanings and applications of these concepts for specific practice settings will be essential for determining the relevance for health and well-being outcomes. Practitioners and policy writers are, therefore, urged to work in partnership with communities and service users in clarifying these concepts in policy and practice within local settings. Cultural safety has been mostly focused on the education of health professionals and the delivery of healthcare services, though it has been gradually applied in areas

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of human and social services more generally. More research is needed to demonstrate pedagogical approaches that lead to demonstrable outcomes of cultural safety education in the delivery of care (see Mills, Creedy, and West 2018). Given that there is more extensive literature relating to social inclusion and the potential overlap of these concepts, review of this literature for synergies is recommended. Another area requiring more attention in research and practice is assessment of the implementation of social inclusion or cultural safety in care settings. Grant and Luxford (2009) explored the use of video as a decolonizing tool for intercultural communication between nurses and mothers in a healthcare setting. Video can be useful as a tool for both research and in practice for assessing the cultural safety of healthcare interactions and can be used as an educational tool. Involving service users in assessment is part of culturally safe practice and systems and necessary for goals of health equity. Understanding the structural reforms necessary for health equity involves commitment throughout these systems (2020). More research is needed to assess the ways culturally safe or inclusive services or systems impact health and well-being outcomes. Importantly, this research itself needs to be culturally safe, decolonizing, and inclusive (see Smith 2012). Western models of knowledge creation and research practices are unlikely to reveal the full benefits of culturally safe services and systems and the longer-term impacts. Research approaches such as community-based participatory research offer promising methods toward these goals (see Wallerstein et al. 2018).

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Digital Inclusion Social Inclusion in the Digital Age

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Is Digital Inclusion? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Digitally Excluded Individuals and Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Age Divide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Economic Divide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Education Divide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Geographic Divide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Disability Divide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Towards a Unified Framework of Digital Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Critical Factors for Digital Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Unified Framework for Digital Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Practical Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Education Is Both Shaping and Shaped by Digital Inclusion . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Enhancing Healthcare for Vulnerable Population Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Leveraging Social Capital and Reducing Economic Disparity . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Digital technologies can be either as an essential facilitator and divider of social inclusion in the information society. They promote social inclusion by allowing for the delivery of real-time services that can enable individuals to learn, work, and live without being subject to physical or social barriers. Meanwhile, there is increasing concern about digital inclusion that individuals of disadvantaged groups can have access to, and skills to use digital technologies. The rapid digitalization of people’s lives, including work, education, and social life, has given opportunities and challenges to digital inclusion. Despite its increasing A. Nguyen (*) Learning & Educational Technology Research Unit (LET), University of Oulu, Oulu, Finland e mail: andy.nguyen@oulu.fi © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_14

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importance for sustainable economy and society, there is a few semantic structuring of the links between digital technologies and social inclusion. This chapter presents a conceptual framework for key dimensions of digital inclusion as well as examines the relationship between digital technologies and social inclusion. The proposed framework acts as a tool for assessing digital inclusive needs and reflecting social inclusion in the digital age. Keywords

Digital inclusion · Digital divide · Digital literacy · Information technology · Social inclusion · Conceptual framework

1

Introduction

During the last decade, digital technologies have become an integral part of society and social change. Digital technologies play both a part in shaping and shaped by social activities, organizational behavior, and individuals’ daily life. They have appeared in every aspect of society from accessing education and healthcare, getting a job, performing work, communication, or entertainment. In many countries, access to the internet has been recognized as a basic utility service like electricity and water (Borg and Smith 2018; Walton et al. 2013). Rapid digitalization has presented novel value-producing opportunities and promoted prosperity, but it has raised increasing concerns on the digital divide and inequalities between those who have access to technology and those who do not (Parsons and Hick 2008; Robinson et al. 2015). These concerns have been considerably highlighted in the COVID-19 pandemic in which most activities and social interactions have moved to the digital spaces (Khilnani et al. 2020; Xie et al. 2020). The shift to the digital environments has exacerbated inequalities along many axes such as gender, age, income, and ethnicity. During the lockdown and social distancing periods, going digital becomes a necessity and it leads to significant disadvantages for individuals and communities socially excluded from the digital world. Although there have been several digital projects in a wide range of contexts and countries over the last decade (European Commission 2019; Madon et al. 2009; Mervyn et al. 2014), this is an urgent need to work toward digital inclusion to support all individuals and communities to get through the current pandemic and to establish foundations for the society development in the digital age. Digital exclusion is a widespread and rising phenomenon that leads to several consequential deteriorations in individual life paths such as poor health, inadequate incomes, and a higher threat of marginalization (European Commission 2019). According to the International Telecommunication Union, there is only about half of the world population has access to the internet (ITU 2020). Likewise, the European Commission reported that more than 80 million Europeans never use the internet. The report indicates that the inaccessibility to the internet relates to financial issues or inadequate skills and knowledge. Another reason for rejecting internet

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access is reported as a lack of interest in using it. Likewise, previous studies showed that the mental model considerably influences the adoption and use of digital technologies (Borg and Smith 2018; NZ Digital government 2020). The factors attributing to social exclusion include education, culture, trust, and confidence levels. Furthermore, various physical or cognitive disabilities may socially exclude individuals from the digital society. Addressing digital exclusion will not only establish a fair society but also foster economic growth and society development. For the last two decades, governments and social researchers have rapidly burgeoned with interest in investigating and promoting the role of digital inclusion. Simultaneously a proliferation of terms has emerged for describing social inclusion and its key components. Accordingly, this chapter reviews and updates the conceptualizations of digital inclusion and presents a unified framework of digital inclusion. This chapter aims to: (a) summarize relevant theoretical concepts and social issues related to digital inclusion; (b) grounding critical constructs of digital inclusion to establish a unified framework; (c) discussing practical implications; and (d) offering future directions for research and practice.

2

What Is Digital Inclusion?

Digital inclusion is a form of social inclusion in the digital age that broadly refers to the concept of ensuring all individuals and communities in society equal opportunity and ability to access and effectively use digital technologies (Borg et al. 2019). Digital technologies include software and hardware for different information and communication technologies (ICTs), the internet, relevant content, and services, as well as the skills and knowledge required for effectively using them. Digital inclusion means that individuals and communities in society can understand the benefits of digital technologies and obtain equitable and affordable access to digital technologies to the fullest possible extent so that all individuals can understand and obtain. Digital inclusion helps the society take advantage of the relevant educational, economic, and social opportunities to the fullest possible extent (Borg et al. 2019; European Commission 2019; NZ Digital government 2020). In contrast to digital inclusion, digital exclusion entails the state in which individuals or communities do not adopt or use digital technologies effectively. It excludes those people from the aforementioned opportunities available through digital technologies (Khilnani et al. 2020; Soja 2016). Similar to other forms of social inclusion, digital inclusion also emerged from the growing attention on social exclusion of a sizable portion of the society. Historically, the concept of digital inclusion has been originated from its more broadly known predecessor, the digital divide (Walton et al. 2013). The digital divide generally implies the inequality gaps related to digital exclusion. In 1999, the US Department of Commerce’s National Telecommunications and Information Administration first officially published the concept of the digital divide to addressing the widening gap of digital adoption and usage among community groups (NTIA 1999). The digital divide used to refer to “the separation between those who have access to digital

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Fig. 1 Digital divide, digital literacy, and digital inclusion

Digital Literacy Digital Divide Digital Inclusion

information and communications technology (ICT) and those who do not” (Riggins and Dewan 2005, p. 298). The unequal access to technology is often blamed for establishing and extending a digital divide between those enjoying affordances of technology and others lacking its benefits. Beyond access to ICT, the second level of the digital divide was later recognized as the ability to utilize digital technologies to find, evaluate, use, and create digital content. This concept often refers to another term named digital literacy (Jaeger et al. 2012). Digital inclusion is now recognized as complex and multifaceted (Borg and Smith 2018). Currently, the term digital divide is defined as “the gap between individuals, households, businesses and geographic areas at different socio-economic levels with regard both to their opportunities to access ICT and to their use of the Internet for a wide variety of activities.” (OECD 2007, p. 5). Accordingly, in this chapter digital inclusion is referred to as the act of enabling all individuals and communities including those with disadvantages to utilize and engage with digital technologies and attain associated opportunities. Digital inclusion has been generally recognized as the opposite concept to the digital divide and enhanced by digital literacy. Nevertheless, up to now, far too little attention has been paid to establish a semantic network between these concepts. A systematic understanding of how the digital divide and digital literacy contribute to digital inclusion is still lacking. The cooperation of the digital divide and digital literacy determines the state of digital inclusion in society. Figure 1 illustrates the relationship between these concepts of the digital divide, digital literacy, and digital inclusion.

3

Digitally Excluded Individuals and Communities

Digital inclusion or exclusion is a multidimensional phenomenon involving numerous factors that make challenging to be measured (United Nations 2016). Nevertheless, there is relatively sustainable evidence reported for different types of the digital divide among sociodemographics attributing or correlating to digital exclusion and

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hindering the efforts in reaching digital inclusion (Riggins and Dewan 2005). In particular, previous research has recognized certain sociodemographic attributes for individuals and communities potentially at risk of digital exclusion concerning age, education, economic status, physical and cognitive disabilities, and other statuses. Generally, digitally excluded individuals and communities are more likely to be older adults, or those having low incomes, low educational attainment, living in rural areas, or living with disabilities (Borg et al. 2019).

3.1

Age Divide

While older adults often get left behind by new technology, they are still gradually expected to employ internet-based digital technologies for health, finance, and other services (Chen et al. 2020; Martínez-Alcalá et al. 2018; Xie et al. 2020). In addition, they may also need to use technology for reading news, obtaining information, and communicating with others in the rapidly digitalized world. Especially, digital exclusion has become a crucial risk for older adults in social distancing and lockdown during COVID-19 (Xie et al. 2020). Digitally excluded adults face social isolation while staying at home as social interactions can mostly be conducted through digital technologies and the internet. Although digital technologies are increasingly adopted by the world population, they are insufficient in reaching older adults. As digital technologies and the internet become a necessity, older adults are in a vulnerable position in which they may not get access to essential activities, information, and services. For instance, it is challenging for digitally excluded older adults to participate in common communication platforms such as social media for social interactions with family and friends. Nevertheless, previous research showed that old adults’ potential risk of digital exclusion can be improved through digital inclusion classes (Betts et al. 2019). On the other hand, young people have been growing up and living in a world surrounded by digital technologies and the internet. They are engaging with technology for various purposes such as study, leisure, and communication in everyday life. Consequently, they are called digital natives (Palfrey and Gasser 2013), millennials (Considine et al. 2009), or net generation (Tapscott 2008). The term digital native broadly refers to people who are born in the digital age growing up with technology and have a natural ability for technology adaptation. Unlike previous generations, digital natives have different attitudes toward news sources (Veinberg 2015). This generation does not consume traditional media channels like newspapers, magazines, and radio. They tend to move forward news and information sources that are available on-screen and composed of multimedia elements such as sounds and moving images. In order to survive, the radio and newspaper have to adapt by moving onto the internet and being available in the form of online media. Digital natives seek news and information from various media sources rather than depend on a single one. One of the biggest news and information sources are via social media network. Young people share information among themselves and the feedback mechanism qualitatively validates the information on the social media

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network. In academic environments, digital native students have similar attitudes while seeking for information. They tend to engage more with online and interactive multimedia learning materials. Nevertheless, some research suggests that not all young people born after 1980 are digital natives as only one over six people in the world has access to digital technologies (Akçayır et al. 2016). The location where people grow up tends to determine the accessibility to the internet and technologies. Furthermore, young people’s engagements with digital technologies may vary among different groups and individuals (Margaryan et al. 2011).

3.2

Economic Divide

Not surprisingly, poverty has been one of the central reasons for digital exclusion. Many people do not have access to digital technologies or the internet because they cannot afford them (Borg et al. 2019; European Commission 2019; Min 2010). Since the early recognition of the digital divide, governments around the world have attempted to improve digital infrastructure and make it affordable to everyone (European Commission 2019; NTIA 1999; NZ Digital government 2020). Furthermore, there have been several projects providing free access to digital devices, resources, and the internet for educational or even public use (e.g., Digital Inclusion Map 2020). However, low income is also correlating to low educational attainment and inadequate digital literacy that also attribute to digital exclusion.

3.3

Education Divide

As digital inclusion is not related to physical access but also digital literacy and mental models of individuals and communities, previous studies have provided evidence supporting the correlation between educational attainment and the adoption and use of educational technologies (Chen et al. 2020; Min 2010). People with higher education are more likely to be active in using digital technologies and the internet (Borg et al. 2019; Min 2010). They might have better skills and knowledge of new technologies. Furthermore, they might be more aware of the potential benefits of using digital technologies for improving productivity or enhancing the quality of leisure. Another reason might be due to the required use of digital technologies and the internet for their research and work.

3.4

Geographic Divide

Digital exclusion is correlating to the geographical location where individuals or communities live in (European Commission 2019; Mervyn et al. 2014; Min 2010). In particular, people living in rural areas where lack of digital infrastructure face

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challenges related to physical access to digital technologies. For instance, internet broadband might not cover all rural residential areas. Such as, individuals and communities in these areas are likely to be digitally excluded due to no internet availability, or low-quality and expensive internet services. Beyond the physical access, the geographic divide may also relate to digital exclusion indirectly through the culture of the living location.

3.5

Disability Divide

People with disabilities are more often found to be digitally excluded in comparison with those without disabilities (Borg et al. 2019; Borg and Smith 2018; Xie et al. 2020). The barriers to adopting and using digital technologies vary from one kind of disability to another. For example, people with a quadriplegia disability or a disability in the hands or eyes get physical disadvantages in contacting and using digital technologies. On the other hand, people with intellectual disabilities may face challenges in learning how to use digital technologies effectively. Fortunately, people with disabilities can be supported by assistive technologies specially designed for them (Borg et al. 2019; Nguyen et al. 2018). For instance, Nguyen et al. (2018) propose a framework for applying learning analytics technology in serious games for people with intellectual disabilities. Likewise, previous research suggests that an inclusive approach should be taken in the research and design of digital technologies (Borg et al. 2019).

4

Towards a Unified Framework of Digital Inclusion

Sociodemographic characteristics such as age, gender, and income can influence digital inclusion but the digitally excluded groups are not homogenized (Borg and Smith 2018). For instance, it is generally believed that young people are digital natives with a natural ability for digital technology adaptation. However, previous studies showed that their engagement with digital technologies may be greatly influenced by several factors such as inadequate internet infrastructure, device access, or personal experience (Calderón Gómez 2020; Smith et al. 2013). These studies highlight the essentials of stepping beyond sociodemographic characteristics to better understand and support social inclusion. Research on the digital divide has recognized multiple aspects of digital inequality, defined expansively in terms of access, skills, usage, motivation, and self-perceptions (Dijk 2005; Dodel and Mesch 2018; Robinson et al. 2015). In recent work, the author has conceptualized critical factors for digital inclusion to construct a unified framework for digital inclusion. The conceptualization was grounded from the literature in the domain as well as relevant government reports and guidelines. The author and his colleague have applied the proposed unified framework for digital inclusion in a specific context of digital learning and presented the framework at the 28th European Conference on Information Systems (ECIS) 2020.

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Critical Factors for Digital Inclusion

From the literature study, Nguyen et al. (2020) noted that the key aspects of digital inclusion proposed by Dijk (2005) would best fit with the development of a unified framework for digital inclusion. These aspects consist of motivational access, material access, skills access, and usage access. Motivational access is principally determined by attitudes toward technology. Material access reflects the opportunity and means to access technology. After embracing a favorable attitude toward technology and acquiring physical access, relevant skills are required to use technology. Accordingly, skills access reflects the acquisition of the necessary skills to utilize technology efficiently and effectively. The actual usage of technology is the final stage of digital access in Dijk’s (2005) model. However, the author reasoned that the usage of technology is an outcome and highly dependable on the other three aspects; thus, this aspect does not fit the generalizability of a unified framework for digital inclusion. As a result, the initial set of critical factors for digital inclusion includes motivation access, material access, and skills access. Consequently, the author evaluated the initial set of critical dimensions grounded from the literature by comparatively assessing against the government reports. Particularly, the author examines the identified key aspects of digital inclusion with those reported by the European Commission and the New Zealand Government. Both European Commission and New Zealand Government recognize the identified aspects, namely motivation to participate in and benefit from today’s growing knowledge and information society, accessibility to technology, and skills to use technology effectively and efficiently. Although the naming and definition vary between the sources, the ontological characteristics of the recognized factors are highly similar. In fact, the critical factors for digital inclusion suggested by these frameworks could be integrated into three main factors: digital acceptance (motivational access; social inclusion; trust); digital literacy (skill access; skills and digital skills; skills); and digital accessibility (material access; accessible ICT; access; assistive technologies). The synthesis of critical factors for digital inclusion is demonstrated in Table 1.

4.2

Unified Framework for Digital Inclusion

Unified framework for digital inclusion was constructed based on the conceptualized critical factors for digital inclusion. The framework consists of the proposed critical factors for digital inclusions, their features, and relationships grounded from the literature (Nguyen et al. 2020). Figure 2 presents the unified framework for digital inclusion. The foundation of digital inclusion is digital accessibility that reflects the opportunities to get access to the components of digital technologies such as hardware, software, and information. There are four feature categories in the digital accessibility layers, namely availability, connectivity, affordability, and assistive design. The first category of accessibility is availability, which refers to the opportunity and means to access specific education technology. In this case, the availability category is used to indicate the technology genre required for the learning activity. Digital

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Table 1 Critical factors for digital inclusion Dimensions selected from the literature review: Dijk (2005) European Commission

Motivational access Social inclusion

Material access Accessible ICT

New Zealand Government Proposed critical factors for digital inclusion

Motivation Digital acceptance

Access Technology accessibility

Skills Usage access access Skills and Assistive digital technologies skills Skills Trust Digital literacy

Fig. 2 Unified framework for digital inclusion (Nguyen et al. 2020)

literacy can be defined as the ability to find, evaluate, utilize, and create information by using various tools and platforms effectively and efficiently. Digital literacy consists of computer literacy and information and media literacy. While computer literacy focuses on the skills required for using digital devices, information and media literacy refers to the ability to find, evaluate, and utilize needed information and media. The definition of information and media literacy and its importance has been recognized by several organizations and governments (Jaeger et al. 2012). Finally, digital acceptance refers to the understanding and attitudes towards the use of digital technology. This dimension contains the awareness of technology, perceived usefulness, perceived usability, and perceived trustworthiness.

5

Practical Implications

5.1

Education Is Both Shaping and Shaped by Digital Inclusion

Education plays an extremely important role in digital inclusion as it does not only improve individual skills to manage technology’s complexity but also encourage individuals to use technology in their professional and personal lives (Cruz-Jesus

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et al. 2016; Rogers 2003). With regard to the critical factors for digital inclusion, education is the means to leverage both digital literacy and acceptance. Digital inclusion education provides essential skills and knowledge to adopt and use digital technologies effectively. For instance, this can be seen in the case of digital inclusion classes for older adults (Betts et al. 2019). According to the proposed unified framework for digital inclusion, the foundations in digital literacy contribute to self-confidence and affects individual mental model hence indirectly enhance the digital acceptance. Furthermore, education directly influences digital acceptance by raising awareness about the benefits of digital technologies and promoting trust by educating security and privacy issues and practice in using digital technologies. Nevertheless, as digital technologies have also pervaded different facets of learning and teaching, educational policy-makers and institutions must concern digital inclusion in education (Cruz-Jesus et al. 2016; Hohlfeld et al. 2017). For example, the extensive use of learning management systems and online learning platforms allows for distance learning. Still, it creates learning barriers to those who do not access to digital devices and internet. The understanding of digital inclusion in education has gone beyond the notion that inclusion is all about people with special needs (Qvortrup and Qvortrup 2018). The adoption of educational technologies in the classroom also faces the digital exclusion risks presented in the proposed unified framework for digital inclusion: digital accessibility, literacy, and acceptance. Accordingly, educational technology is accused of the responsibility for creating inequalities in education. Today, the education landscape can be considered of both a digital transformation being and the engine powering it (Wedlock and Growe 2017). The adoption, implementation, and use of the affordances offered by the fastchanging technological advancements are necessary. However, it also raises the need to contemplate the digital divide, promote digital literacy and digital inclusion in every society.

5.2

Enhancing Healthcare for Vulnerable Population Groups

Health as the fundamental right of every human being has been always a core dimension of social inclusion since the emergence of the concept (European Commission 2019; NTIA 1999). The social inclusion in healthcare has received substantial attention from several researchers and governments (Borg et al. 2019; MartínezAlcalá et al. 2018; Soja 2016). Traditionally, inequalities in healthcare often refer to inequitable services and benefits provided to different individuals or communities. These inequalities mainly relate to the sociodemographic characteristics and unequal distribution of healthcare resources. The advancement in digital technologies has offered great improvement in the quality of healthcare as well as allowed for increased capacity (Soja 2016). Consequently, as aforementioned above, healthcare information and services are going digital and online in the trend of digitalization and centralization. Although digital technologies have contributed to promoting the original aspects of social inclusion in healthcare, the widespread and growing use of digital technologies greatly escalates the risk of certain groups of vulnerable people

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being digitally excluded (Borg et al. 2019). Digital excluded individuals and communities might be in danger not getting their fundamental rights for health. Interestingly, the reciprocal relationship between healthcare and digital inclusion shares certain comparable characteristics to that of education. In both cases, the benefits of digital technologies are indisputable, but they can be only accomplished fully once digital inclusion is ensured.

5.3

Leveraging Social Capital and Reducing Economic Disparity

Deprivation has been the central element of social inclusion in general as well as digital inclusion (Alam and Imran 2015; Mervyn et al. 2014). The material access to digital technologies is the fundamental factor for their adoption and usage. However, financial barriers to digital technologies can be encountered at any level from individuals, communities to governments. At the individual level, one may not afford digital device purchase or service subscription to receive the benefits or opportunities offered through digital technologies (Parsons and Hick 2008). This reflects the economic divide between the low- and high-income groups. Moreover, deprivation may restrain educational opportunities thus hinder the growth of digital literacy. However, people with digital skills and knowledge are more likely to get superior earnings in comparison to those who do not have. Digital technologies provide opportunities for individuals to escape poverty. If the awareness of the economic opportunities offered by digital technologies would motivate individuals to develop their digital literacy. Nevertheless, digital accessibility needs to be managed and supported by the communities and governments to tackle digital exclusion. At the community and government levels, providing digital accessibility as the foundations for digital inclusion might require a vast amount of investments. For instance, the coverage of internet infrastructure is crucial for ensuring digital inclusion, especially for addressing the geographic divide. Furthermore, devices and services should be affordable to avoid broadening the gap in the economic divide. The digital inclusion resources like the Digital Inclusion Map (2020) are helpful for the community growth in digital inclusion. Fortunately, research showed that those investments in digital inclusion are likely to return greater economic values by promoting social capital, reducing the economic disparity, and increasing the productivity (Guerrieri and Bentivegna 2011; Jaeger et al. 2012; Wiig 2016). As digital accessibility is the foundation for digital inclusion, governments’ strategic planning and actions are crucial for society to achieve digital inclusion.

6

Conclusion and Future Directions

Considering the increasing importance of digital inclusion as a key growth strategy for the digital transformation of society, this study examined and conceptualized its critical dimensions. The framework proposed in this chapter comprises three central

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aspects of digital inclusion activities that help to indicate digital needs and potential digital divides in assessing digital inclusion. These aspects consist of digital accessibility (opportunity and means to access technology), digital literacy (ability to use technology to find, evaluate, utilize, and create information effectively and efficiently), and digital acceptance (the understanding and attitudes including trusts towards the use of digital technology). Contemporary discourses have focused on whether the application of technologies will help either bridge the digital inequalities or further the divide (Buré 2006; Henwood et al. 2002). The effective use of information and communication technology can significantly contribute to social inclusion (Andrade and Doolin 2016; Mervyn et al. 2014), promote learning (Ainley et al. 2008), improving healthcare (Khilnani et al. 2020; Soja 2016), and offer better access to essential skills for all social groups (Caswell et al. 2008; Nguyen et al. 2018). Nevertheless, the adoption of digital technologies also leads to several social inequalities if digital inclusion is not attained. For example, the question to be asked is whether digital learning encourages closing the gaps towards digital inclusion or becomes encumbered by the digital divide (Nguyen et al. 2020). The unified framework of digital inclusion from the theory-inspired conceptualization of digital inclusion has been proposed. The author hopes to provide a better understanding of digital inclusion and its critical dimensions. Researchers and policy-makers could apply this proposed framework for assessing digital inclusive needs while planning digital inclusion activities. The framework will act as a tool for policy-makers to map in resources required for their digital inclusion work plan. Accordingly, they can establish a more inclusive plan for individuals and communities from different backgrounds. The proposed framework could also assist the policy-makers in strategic planning for digital inclusion at local and national levels by aggregating the digital inclusion needs from different activities. Hence, they can identify and improve the basic needs for leveraging digital inclusion in society. For instance, as an internet connection is a foundation for digital inclusion activities, the investment on the network infrastructure will greatly improve digital inclusion both directly and indirectly via digital learning activities for digital inclusion. Lastly, the author has presented a semantic and systematic view of digital inclusion in the hope to establish a foundation for further development and implementation of methods to effectively measure and promote digital inclusion. The proposed framework is subject to certain limitations that stimulate further research. First, the definition of digital inclusion categories and their characters could be reevaluated with empirical evidence to consolidate the rigorousness of the framework. Second, as the social context is complex and changing over time, further research is required to validate the efficacy of the framework and to refine it. While this chapter acknowledges the limitations and suggests future research directions, it partially substantiates the importance and usefulness of a unified framework for digital inclusion.

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Transforming Knowledge and Power Rebecca Spies, Priscilla Ennals, Rebecca Egan, Philippa Hemus, Kathryn Droppert, Michael Tidhar, Magenta Simmons, Sarah Bendall, Tom Wood, and Kate Lessing Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 A Note About Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 A Little About Our Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Is (and Is Not) Co research? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Key Points: What is and is Not Co research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Re centring the Knowledge of People with Mental Health Challenges . . . . . . . . . . . . . . . . . . 4.1 Who Is a Knower? Whose Knowledge Counts? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Epistemic Injustice and the Situated Knower . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 The Intentional Use of Lived Experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Our Identities as Knowers Are Dynamic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Key Points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 We Need to Talk About Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Power and Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Redistributing Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Key Points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Relational Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Key Points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Principles of Co research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.1 Care for the Process and Each Other . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.2 Be Clear when You Can; Otherwise, Make It Up and Learn Together . . . . . . . . . . 10.3 Co research Should Not Be Easy: Messiness and Discomfort Are Inevitable . . . 10.4 We All Participate Differently and Need Different Forms of Support . . . . . . . . . . . 10.5 Travel and Present Together . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.6 Pay People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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R. Spies (*) · P. Ennals · R. Egan · P. Hemus · K. Droppert · M. Tidhar · T. Wood · K. Lessing Neami National, Preston, VIC, Australia e mail: [email protected]; [email protected]; [email protected] M. Simmons · S. Bendall Orygen National Centre of Excellence in Youth Mental Health, Parkville, VIC, Australia Centre for Youth Mental Health, The University of Melbourne, Parkville, VIC, Australia e mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_138

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10.7 Jargon, Acronyms, and Assumed Knowledge Alienate . . . . . . . . . . . . . . . . . . . . . . . . . . 10.8 Consider What Expertise Your Co research Team Needs . . . . . . . . . . . . . . . . . . . . . . . . 10.9 Involve Key Stakeholders Throughout the Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.10 Making Decisions Without Key Players in the Room Can Cause Problems . . . . 10.11 Representative or Representativeness? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Key Points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Consider what is regarded as knowledge about mental health. Who created that knowledge? What opportunities did people who experience mental health challenges have to contribute to that knowledge; knowledge that informs organizational and social responses to their experiences? We imagine not many. One means to knowledge production is co-produced research; where people who the research is aimed to impact are central contributors to the entire process. This centring requires a shift in control that does not simply happen. Co-research is a transformational approach that requires a foundational rethink of power and epistemology – who is understood as a knower and how others might be excluded from this identity. This chapter outlines the authors’ experience of being involved in a co-research project in a youth residential mental health setting. We explore the foundational principles and concepts of co-research, outline some of its challenges and possibilities, and use our experiences to highlight the transformative potential – both personally and professionally – of genuine co-research. Keywords

Collaboration · Power · Epistemology · Knowledge · Mutuality · Mental health · Lived experience · Relational safety · Co-research

1

Introduction

Co-production is a way of doing research that involves researchers and other stakeholders coming together to design, undertake, and deliver a research project collaboratively. Done badly, co-production is a tokenistic reproduction of traditional power dynamics. Done well, it is a challenging and transformative experience where positive effects are experienced at individual, service, and system levels, often in unexpected ways. The authors of this chapter include young people, service delivery staff, and researchers who collaborated on a co-produced research (co-research) project in a youth residential mental-health setting. This chapter will highlight the principles of co-research through sharing our story. We define co-research, reflect on our process, and discuss the elements foundational to authentic co-research. By sharing the tools, we used to build our process, we aim to be pragmatic. Yet the tools of co-research cannot be contained in rules or checklists. Like other participatory models, co-research is based on mindsets and principles that influence ways of thinking, talking, interacting, and behaving (Aldridge 2019). And refining

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Fig. 1 The evolving roles and expertise of our co research team

principle-based skills requires practice and reflection. This chapter offers some reflections of how we enacted co-research principles, in the hope that they may inspire, or resonate with readers. These reflections mirror the types of conversations we have had, and continue to have, with each other. We welcome you into our conversations and invite you to learn alongside us.

1.1

A Note About Language

We refer to mental health service users as consumers, acknowledging that there are a range of terms used to describe people who experience mental health challenges and service use, including (ex)patient, survivor, service user, and peer. We refer to ourselves according to the expertise we brought into the project: as young people/ consumers, service delivery staff, lived experience researchers, and ally researchers. These titles are used for clarity and brevity. We acknowledge that they are reductive; they do not reflect how our expertise has changed and developed over the course of our project, they do not reflect the ways we now refer to ourselves, nor do they reflect that in this project we all became co researchers. These challenges – of language, identity, and knowledge – are explored throughout the chapter (Fig. 1).

1.2

A Little About Our Project

Our project sought to understand what matters to young people living in Youth Residential Rehabilitation Services (YRRS). YRRS are Australian state governmentfunded voluntary services that provide residential psychosocial support for up to 12 months to young people aged 16–25 requiring mental health support. We searched the literature and found no one had really described what best practice in these settings looks like, especially not from the perspective of young people. A steering group of YRRS consumers, staff, and internal, external, and lived experience researchers were

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recruited to design, develop, conduct, and present the research. Group membership changed over time, but we tried to keep the ratio of lived experience to non-lived experience members as equal as possible. We collectively decided on a participatory action research (PAR) approach (McNiff 2017), using qualitative individual and focus groups interviews. Interviews with staff and young people revealed the core elements of a safe, youth sensitive, trauma-informed service. Our findings were captured metaphorically in the image of an egg with mutually reinforcing elements that protect, nurture, and support growth. In line with our PAR approach, we conducted an additional round of data collection and analysis to inform outcome measurement and embedding the model in practice. Further details of this project have been published elsewhere (Ennals et al. 2021; Spies et al. 2021).

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What Is (and Is Not) Co-research?

Co-research involves genuine mutual collaboration between researchers and stakeholders from the cohort they are researching across all phases of a research study, including planning, design, delivery, and dissemination (Roper et al. 2018). This concept of genuine mutual collaboration is crucial. Co-research is not merely making space at the research table, it is about creating conditions for consumers to exercise direct control over the research process, acting as leaders rather than advisors (Baxter et al. 2001; Stewart et al. 2019). Because consumers and researchers are coming together to understand and improve something they care about, co-research has an in-built mandate for social change action beyond the conclusion of a study (Gamble et al. 2018). Beyond a research method, it is a stance and transformative ethos that seeks to redress the marginalization of consumer voices in research. It is an approach that is founded in justice (Scrutton 2017). Tokenism is unacceptable. I’d much rather people simply never tried than pretended to care and have the appearance of being a ‘good person’. It’s exhausting. It’s hurtful and it is next level disheartening. Pip, consumer

This genuine mutual collaboration turns all stakeholders – consumers, staff, and researchers – into research participants. This might be an unfamiliar stance for researchers where the “gold-standard” is objectivity, or for consumers used to being the object of study. Participant assumptions, expectations, knowledges, and experiences inform the co-research process, which itself becomes an object of study (Gamble et al. 2018). Co-research is personal in ways not demanded by other approaches. It requires ongoing self-reflection about one’s role, experiences, and expertise (Rose and Kalathil 2019). While this may feel unique or uncomfortable for researchers, through reflection and participation, capacity grows. Co-research builds the capacity of researchers to listen, and to understand the personal and systemic barriers that prevent diverse voices from being heard. Co-research builds the capacity of consumers to voice expertise in impactful ways (Byrne and Wykes 2020). Co-research develops collective capacity to co-create environments for these exchanges to occur safely.

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Co-research is a generative approach that values and builds the knowledge and expertise of consumers and researchers alike (Slay and Stephens 2013; Roper et al. 2018; Stewart et al. 2019). You need to give a lot of yourself in co research. It feels fundamental to its authenticity and success. Indeed, withholding self is a form of power, distancing myself as objective observer not subjective participant. We can’t all be in this together if we stifle how and what different people find hard about the process. I learnt that being open about my challenges, hopes, expectations and disap pointments isn’t countertransference, its collaboration, and that’s the power of this process. Bek S, researcher

Co-research relies on strong relationships marked by trust, experimentation, and interpersonal safety. Co-research is an emerging approach, which necessitates a flexible, learn-as-you-go attitude (Baxter et al. 2001). This means mistakes are inevitable. For mistakes to be learning opportunities, vulnerability is required. All participants need to be transparent about their assumptions and actions, and feel safe to give and receive constructive feedback. Cultures of collective vulnerability and safety take time to build, and this process of building relationships and shared values is central to co-research (Baxter et al. 2001). While this emotion-, time-, and labor-intensive step might seem like a nice-to-have, it is central to the success of co-research processes, especially for participants who may have experiences of relational trauma. Consumer experiences are not singular (Daya et al. 2019). Recruiting one consumer co-researcher and expecting representativeness is misguided and can reinforce the isolating or “othering” of consumer experience. Involving multiple consumers acknowledges that individual experiences and contexts influence personal views and advocacy priorities. Seeking diversity broadens the range of perspectives and experiences a project draws from (Scrutton 2017; Daya et al. 2019). The aim is not to be all-inclusive, but acknowledging the limited representativeness of all participants can help to identify missing perspectives.

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Key Points: What is and is Not Co-research

Co research Consumer as strategist and leader Researcher as participant Consumer as leader, researcher as learner Genuine collaboration Consumer expertise valued Consumer involvement across all phases of research Ongoing self reflexivity of all participants Mutual growth and development

Not co research Consumer as advisor or consultant Researcher as observer Researcher as leader, consumer as learner Token involvement of consumers (Over)use of jargon, which alienates consumers Consumer involvement at select phases of research Limited understanding of researcher social and cultural bias Lack of reciprocity, e.g., participant gets experience, researcher gets knowledge and prestige (continued)

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Co research A culture of exploration and learning Time, energy, and resource intensive

Not co research Participants unsafe to share thoughts or ask questions Unpaid labor

(Sources: Roper et al. 2018; Scholz et al. 2018; Sangill et al. 2019; Stewart et al. 2019).

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Re-centring the Knowledge of People with Mental Health Challenges

Co-research processes which “close the distance between direct experience and its interpretation” (Gillard et al. 2010, p. 4) are of heightened importance when working with marginalized populations such as people with mental health challenges, who are often dislocated from their self-knowledges (Fricker 2007; Grant et al. 2015). Mental Health Acts allow clinicians to legally detain and medicate people against their will. Therapists can override people’s personal narratives – indeed their fundamental human rights – if they are not deemed adequately rational. Diagnoses can be used to define and pathologize people’s identities without acknowledgement of the influence of structural, cultural, and historical factors. Western medical models can reject different worldviews and explanatory models of illness. Historically, people with mental health challenges have not been seen as knowers; their knowledge has not been valued or trusted (Roper et al. 2018). Consideration of this context reinforces the necessity of an emancipatory, social justice lens in co-research, without which, oppressive power dynamics remain. As a consumer within the mental health system who was both consistently treatment compliant and non argumentative with the ability to contextualize my experience in a language that was deemed perceptive by mental health professionals, I have often been labeled insightful. This label of insight has never assisted me in avoiding forced treatment. It also to my surprise never seemed to come in use when I would disagree with a treatment suggested, or with a professional’s own judgment towards my experiences. The moment my verdict and a pro fessional’s were no longer congruent, this label of insight was often rejected, and a label of “lack of insight” quickly took its place. It was as if, simply speaking, I was only knowledgeable if I reflected the views of those with power. After my psychiatrist attempted another round of forced Electroconvulsive Therapy (ECT) a treatment I had experienced as ineffective it was only when three other mental health professionals on my team agreed that they too had seen no benefit and that refusing this treatment should be my choice that she agreed to not push another round of ECT further. It was only thanks to professionals who she saw as on the same epistemological level as herself that this was avoided. Bec E, consumer

4.1

Who Is a Knower? Whose Knowledge Counts?

Take a moment to consider what you regard as knowledge – the sources of knowledge that you use and consider to be legitimate. How did you come to learn what you

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know and what you use to guide your thinking and your work? What are the sources of knowledge you are told are most relevant, valuable, valid, believable, truthful, and correct? Now, think about who created that knowledge – who got to do the inquiring, whose perspective designed the focus, who determined how information was collected, analyzed, and reported – who got to make meaning of it? What opportunities do people who experience illness and/or disability, people who are marginalized, or people who use health and social services have to contribute to knowledge that informs an understanding of their situation, their need for services, or the way services are delivered to them? We imagine very few. Traditionally, lived experiences of mental ill-health are considered translatable into trusted, legitimate data only through the process of being collated and interpreted by researchers. In co-research – where all parties are both researcher and participant – memories, experiences, and reflections are considered of value without being funnelled through a researcher. They are valued in their raw form as evidence of experience, and this auto-ethnographic data are accepted as knowledge (Ellis and Adams 2014). We can become stuck in the narrative that academic credentials and research experience are the most important things to consider when deciding who holds power in the space. Both bring valuable skills, but they cannot come before the voices of those with lived experience. Because when that happens you risk your evaluations being filtered through an academic lens, rather than reflecting upon the true lived experience. Bec E, consumer

Co-research approaches acknowledge that both evidence-based practice and practice-based evidence count as evidence (Gamble et al. 2018). That researchers, randomized controled trials, and “big data” are not the sole custodians of evidence. That consumers, practitioners, and communities all have wisdom. And that fusing these different forms of evidence creates robust, contextually-specific knowledge. Each bring a different lens, revealing strengths and limitations of an approach that may have been unseen from a single perspective. Consumers have perspectives and experiences that researchers, staff, funders, and policy-makers do not have. Being open to the diversity of people’s experiences and engaging them early means their expertise can inform what is researched, how, and why, which can enhance a study’s relevance and acceptability (Checkoway 2011; Daya et al. 2019; Sangill et al. 2019; Byrne and Wykes 2020).

4.2

Epistemic Injustice and the Situated Knower

As we have alluded, we all have knowledge – drawn from personal experience, formal and informal education, and our social and cultural context. Our social situation, or “situatedness,” affects what and how we know, what we can expect of

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ourselves as a “knower,” and if we might expect others to listen (Rose and Kalathil 2019). This matters because different people’s knowledge is valued differently. In Western, colonialist, patriarchal, ableist societies, the experiences of white, cisgendered, “able” males are disproportionately valued over other perspectives (Medina 2013). The possibility that others’ experience counts as knowledge or expertise can be rejected (Pohlhaus 2012; Smith 2012), with other voices at risk of being actively excluded. This situation can be understood as epistemic injustice; that is, an injustice done against someone “specifically in their capacity as a knower” (Fricker 2007, p. 1). If people are systematically excluded from knowledge generation or exchange, it undermines confidence in their knowledges and capacity as a “knower” (Fricker 2007). This was significant in our project, as young people with mental health challenges are doubly marginalized on account of their age and mental health (Delman 2012). In co-research processes, relations to who is a knower and what counts as knowledge change for everyone (Rose and Kalathil 2019). As our project evolved, young people grew into their knowingness, as staff and researchers grew into their un-knowingness. How knowledge gets constructed, and by who, matters. Consumers are often omitted from this process – and where they are included there can be a bias toward white perspectives (Rose and Kalathil 2019) – which means that harmful or oppressive practices continue. Genuine co-research where consumers participate in setting research agendas is one avenue of redress. Co-research requires the right people at the table, under the right conditions to ask the right questions to get the right data – and who and what is considered “right” should be determined by those who the research is aimed to impact. To be genuine, researchers must attend to histories of intersecting marginalization and the impacts they have on people’s ability to participate in an ongoing way (Gamble et al. 2018). One invitation to speak does not undo years of systematic exclusion. Confronting privilege, unpacking what feels hard and why, and understanding one’s role in the maintenance of systems of oppression is hard work. But doing the work to address inequities one may perpetuate it necessary and generative. Not only will it support new conceptual, practical, and methodological approaches (Rose and Kalathil 2019), it builds radical forms of solidarity which contribute to healing. Having power in a system that has previously left me powerless has been an unexpected space of healing for my trauma, particularly trauma that has occurred in mental health settings. Involvement in co research has been of deep value for my own healing and I don’t think I am the only one. Bec E, consumer

4.3

The Intentional Use of Lived Experience

There is a difference between “people who happen to have lived experience and those who intentionally learn to view from a lived experience perspective” (Byrne and Wykes 2020, p. 1). This distinction matters, as it informs how people use – and

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are expected to use – their personal experience (Byrne and Wykes 2020; Gordon et al. 2020). Our project included two distinct consumer perspectives: young people residing in the YRRS and a lived experience researcher whose experiences of mental health challenges informed his research approach but who had not used a YRRS. This combination expanded the scope and relevancy of the expertise on which the project drew and enabled collective learning about the different ways people can intentionally use their lived experience.

4.4

Our Identities as Knowers Are Dynamic

We debated the language to describe our roles in the research team as we wrote this chapter. We wanted to reflect the expertise we each brought into the project, as well as the expertise that developed through the project itself. Consumers and staff brought their essential expertise of YRRS to the project but did not initially identify as researchers. In our reflective discussion, we talked about consumers and staff becoming researchers through the course of the project. This happened progressively until there was a realization that our identities had changed. Getting feedback from others as we shared the project at conferences was important in this process. People told us our work was important and that they valued our ideas – we all came to feel that we had expertise. This highlights how engaging in research as a lived experience or staff researcher is a pathway to developing a researcher identity; an alternative to more common pathways such as higher degree study (Inouye and McAlpine 2019) or joining the academy (Ennals et al. 2016). I learnt that life can hold self created purpose. I can study and be involved with academia in a way that I thought was off limits for me. I have found value in learning traditional research skills something that moved me towards choosing Psychology as my degree. However, I will always continue to centre lived experience in my work, and now as a Peer Researcher, I am intentionally a Peer first, Researcher second. Bec E, consumer

With an identity shift comes agency and confidence, a sense of “I have something to say here, and I am going to say it.” This was evident in our discussions, in our more equally shared ownership of the project, and our commitment to talking about our way of co-producing research. As we all engaged with more critical consumer/ service user/survivor literature, we shifted toward a more shared understanding of our end goal. We became an alliance with a shared mission and intention to “transcend rather than always perpetuate” (Russo et al. 2018, p. 1877) divisions between “needy” and “needed.” The bigger shift here came from the more experienced researchers on the team. In becoming co researchers, they learnt to do things differently; listen well, share power, while still bringing their essential expertise of research and the academic world to the table. I experience frequent moments of shame in the co research process. Moments when I realize I am hearing a perspective or view for the first time despite having had those ideas shared with me many times before. Moments that shatter assumptions I didn’t know I held until I was

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forced to look in the mirror. There is learning and growth here but also major discomfort. It is both unsettling and exciting. Priscilla, researcher.

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Key Points

• Evidence-based practice, practice-based evidence, and personal experience are all valid forms of evidence. • Socio-political contexts influence and constrain what is knowable and considered knowledge. • Lived experience is a unique lens and should be included when setting research agendas.

6

We Need to Talk About Power

As we have discussed, creating space at the table for people to participate does not mean that they can. One opportunity does not erase long histories of marginalization and oppression. Conditions need to be cultivated that allow people to feel safe to participate in genuine ways. Safety can comprise of many things – a belief that you have something worthwhile to contribute, trust that people will listen to you without judgment, a commitment to curiosity and welcoming diversity, and accountability if things go awry. Negotiating safety can be an empowering opportunity to have personal expertise validated (Perkins and Repper 2016). Yet none of this just happens. Safety is a process that needs cultivation and ongoing care (Carr and Patel 2016). And for us, it began with talking about power. Power infuses relationships, culture, history, identity; everything really. When the exercise of power is repeated, it gains strength, becomes normalized, and the more normal it becomes, the harder it is to see. When marginalized people speak out, people with privilege might find what they say jarring, or unbelievable, because it contradicts their experience.

6.1

Power and Participation

There is often little understanding of the courage marginalized people demonstrate when participating in processes like co-research. Young people are often told their voice is not worth hearing because they are young. The voices of people with mental health challenges are often discredited on account of their health. Experiences of trauma or exclusion are often poorly understood and attributed to symptoms, personal characteristics, or attitudes, rather than systemic or societal factors. Racialized voices are frequently unheard, regarded as “hard to reach” by white establishments (Rose and Kalathil 2019) – a charge to which our project was not immune. Systems have a habit of co-opting the language of emancipatory approaches, without actually changing power differentials. For young people, given their developmental

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stage, injustice at this time can have huge impacts (both productive and deleterious) on identity and self-development. The intersection of exclusionary prejudices can amplify a sense of marginalization (Checkoway 2011). I got involved in the research as I wanted to help make the program a better place for myself and others. I saw that others were too nervous to discuss their frustrations and I thought I could help. I had used various services before and not had good experiences, so I wanted to be part of advocating and creating change more broadly. As a consumer, I have often felt stifled, disrespected and misunderstood. I often felt very judged and I carried a lot of shame. Shame at what I perceived my “poor choices” had led to. Shame that I simply wasn’t trying hard enough. Basically, a crippling sense of shame about my whole being. But when you are in the thick of things you often aren’t able to see how poorly others have treated you. Or properly see how harmful the narratives and labels they have put on you are or can be. Pip, consumer Consumers should not be asked to the table in co produced research without the commit ment to enacting their shared knowledge to shape the process. Acknowledging power imbalances without attempting to minimize or remove them is to choose to continue holding undeserved power over a group of individuals who have knowledge that is no less valuable than your own. Bec E, consumer

Co-research provides opportunity. But for opportunities to be taken, people need to feel safe to contribute in ways they believe are meaningful and sustainable – for themselves and others. Previous experiences of marginalization or exclusion might prevent people from accepting opportunities. Barriers need to be understood and addressed before an opportunity can be genuine. Our study leveraged young people’s trust with the organization as a support service, to build trust with it as a research partner. Direct invitations or encouragement from staff sowed the seed for some young people to consider participating who otherwise may not have put themselves forward. It can be hard to imagine yourself as a knowledge contributor or researcher if you do not feel knowledgeable. Staff who saw possibilities in others, demystified the role, and encouraged involvement, helped bring in people with diverse experiences. I wanted to build new skills in an environment that felt safe and this service had so far been safe to me. I was also curious about the process of how evaluations occur. Because I had given feedback to services in the past and it always seemed to lead to nothing. I wanted to know if it was how this service worked “behind the scene” that made the YRRS feel like a safe home to me. Bec E, consumer

We acknowledge that an approach founded on established trust may have disadvantaged those who did not have a trusting relationship with the service, as they may not have felt safe to occupy the opportunity to participate. Nor did it enable us to access young people who do not feel safe to access mainstream youth residential mental health services. Shame, reliance on informal supports, and fear their needs will not be met limit mental health service engagement, especially by culturally and linguistically diverse and First Nations young people (Brown et al. 2014). And the perceived (in)appropriateness of youth residential services in a country which

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disproportionately removes First Nations children from their families may further limit service engagement in this context. These research design and structural factors likely limited our connection to a more diverse cohort of experiences.

6.2

Redistributing Power

For co-research to work effectively, privileged people must be prepared to cede power (Faithfull et al. 2019) and do the work to create space for, authentically listen to, and work collaboratively with, people with less power (Fricker 2007). Co-research flips the traditional dynamic by making the privileged do the work. This includes considering who speaks, what they say, and what experiences they have had. Considering what environments and contexts people exist in and emerge from, and how are they culturally understood and (in)validated (Fricker 2007; Pohlhaus 2012). Researchers need to unpack what impacts their ability to listen to diverse voices. They need to genuinely collaborate with people whose voices are marginalized and consider the conditions that will amplify these voices in ethical ways (Fricker 2007). Requesting the involvement of marginalized people here does not seek to unjustly add labor. Rather, it acknowledges that making adjustments without dialogue runs the risk of well-meaning yet ill-conceived approaches that do not meet anyone’s needs. By collaborating with people with less privilege, researchers better understand what questions matter, and can exercise their privilege to influence what is knowable, or worth knowing, within institutions of power. Alongside three young people, I came into this project after it had been running for about 24 months. It was really daunting I remember thinking how on earth can I fill the void of my predecessor? How will I fit in to this team with rich connections? How will I welcome in the newbies when I’m a newbie too?! I knew I had certain types of power as a paid employee, whilst also feeling intimidated by the power that others had developed through their experience in the project. I had to reflect on the dynamics of power, control and ownership in a stewardship role of a project others have much more experience guiding. I realised that my fear of using an unfamiliar approach needed to be met with humility and curiosity, not a bravado urge to prove my worth. I had to dismantle the belief that I was there to lead the process or have all the answers. And it was only when I was honest about not knowing everything that trust could build for us to figure it out together. Bek S, researcher

It is not enough to simply gather individuals with lived experience in the room. You must collectively and continually construct a space where each person feels supported in sharing their genuine reflections. In situations of power imbalance, those with less privilege may yield to those with more power. This could look like agreeing with researchers in order to be seen as knowledgeable, despite not actually agreeing with them. Through adopting the compliant and obedient stance expected of “the good patient,” they may lack the confidence or perceived authority to disagree with the status quo or those in positions of institutional authority (Byrne and Wykes 2020). This may be particularly apparent in work with young people who may not have experienced being seen as “expert” and/or with people whose trauma

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histories may have required a pattern of yielding. Constructing spaces for genuine dialogue requires the individuals with power to do more work, as it is their power that will need to be redistributed across members. In situations where complete redistribution of power is not possible, it will be those with more power who will be required to acknowledge this regularly and continue to find ways to minimize it as much as feasible. Consistent and ongoing attention is required to create a space where it is acceptable and safe to enter a dialogue of disagreement with curiosity – and still be considered “knowing.” Co research requires a commitment beyond the professional. It shifts things internally, personally. For me, this shows up as trying to be acutely aware of how much space I take up in conversations (in minutes and in the weight of my words), trying to speak less and listen more. Being aware that when we have the spotlight I try to turn it away from me towards those whose voices have not been heard. I care about my co researchers but I am conscious I do not need to protect or “save” them I need to do what I can to resource them. This has been front of mind for me when we have been travelling together for conferences. I have made some mistakes but when the balance is just right those voices do take the spotlight and shine. Priscilla, researcher

The reconfigured power relations required of genuine co-research have been identified as a barrier to both the conduct (Happell et al. 2018) and reception of this type of research (Glass and Newman 2015). Yet our experience of redistributing power and influence has felt challenging and powerful – for all stakeholders. Ceding power can be gainful – through a radical process of listening it enables richer, more plural understandings of the world. Analyzing entities like language and culture can dismantle some of the privilege they hold. Yet ceding power must also be generative, as the places where redistributed privilege come from are not necessarily where you enact it. The boundaries of the research project do not mark the boundaries of obligation. Co-researchers are accountable to each other and their findings by advocating for them in other spaces. Failing to do this runs the real risk of using consumer experience for professional gain or personal prestige. Marginalization, powerlessness, and disaffection are amplified when researchers co-opt the language of co-research yet maintain traditional power differentials. And co-researchers have an obligation to reflect on what perspectives their projects failed to engage and why, which may generate future possibilities to connect with differently marginalized voices. Co-research is not appropriate for every project – limited timelines, resources, or capacity to influence an issue may mean other approaches can be more pragmatic. Accurately describing the degree of consumer involvement and influence is imperative to build trust and minimize exploitation. You have a choice, and when you choose to acknowledge us our value, our survival, our knowledge, our humanity and then turn away from our fight, whilst still wanting to be seen as inclusive, it is not any less painful than someone who doesn’t acknowledge us at all. It’s just a different kind of pain, and in some ways it’s one that is more draining, because we are expected to believe in the promise that one day, when it is convenient and easy for you you find a way around the pesky power problem. Unfortunately, power is neither convenient nor easy to navigate. You have to get messy. Some of us are thrown into the mess, and those of us with power have to intentionally choose to enter it. Bec E, consumer

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Key Points

• The operation of power influences who can – or cannot – speak, under what terms, and when. • Safe spaces must be cultivated and tended with ongoing care. People with more power and privilege have greater responsibility in this process. • Shifting knowledge structures is an ongoing project. Our responsibilities to more equitable systems extend beyond our projects.

8

Relational Ethics

In co-research, all team members become participants, often in deep relationship with each other, a situation which can lead to the process itself becoming a phenomenon of study (Gamble et al. 2018; Westerback et al. 2020). This unique situation requires a rethinking of safety, consent, and accountability. As relationships evolve and deepen, and as trust and intimacy build, relationships to risk likewise change. Traditional pre-determined consent statements can quickly become outdated in this dynamic process. Using a “process consent” approach, where consent and safety are understood in relational and contextual terms might be more appropriate for co-research. “Process consent” gives agency to all participants to define the principles to which the process, and each other, are held accountable, while inviting reflection on how individual and collective capacity has developed within the project (Munhall 1991). Clarke et al. (2019) usefully describe a mutually reinforcing cycle of relational and emotional inclusivity that sustains co-production. Meaningful consideration of both administrative and emotional elements is required. Administrative clarity can be difficult in an emergent process like co-research where roles, outcomes, priorities, and expectations develop through doing the research. We offered as much clarity as possible and tempered any administrative uncertainty with clarity on project values and a commitment to transparency, growth, and inclusion. I wasn’t prepared for the logistics of co research. “It’s boring, unimportant admin” I said! “I should be doing thinking work!” It’s so obvious now, but well crafted logistics enable participation. They are a strategy to facilitate connection, not a burden to be tolerated. Finding times, dates and locations that meet the needs and schedules of a diverse collective isn’t easy. But that’s the task. And grumbling about it can alienate folks, devalue their context and entrench inequitable dynamics where communication happens on the terms of the privileged. Bek S, researcher

As co-researchers tend to the process, we demonstrate care for each other (Gamble et al. 2018; Heiman & Timms, as cited in Roper et al. 2018). Relational trust and project integrity intertwine. From this collaboratively built foundation, healing can occur. Many consumers who engage in co-research processes have experienced adversity, harm, and trauma from the very system they sought care. Many researchers have ambitions to develop safer systems. A commitment to

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genuinely engaging and amplifying consumer voice to improving the systems where harm occurs demonstrates situated, contextually-aware ethics, and highlights the transformative potential of co-research. This project was the first research project I had been involved in. I feel lucky that my first experience in research was a positive, authentically collaborative one. The experience of being listened to, believed, and having my reflections being treated with equal worth to everyone else in the room even in the times when they were not collectively agreed upon was a powerful healing tool. To learn to step into a place where I did not have to be agreeable to be seen as insightful was affirming to the value of both my experience and my humanity. It allowed me to share my reflections openly, rather than insincerely appearing in agreement and therefore creating inauthentic and falsely co produced work. Bec E, consumer I have gained a sense of self worth from this experience. A sense of purpose and added meaning. It has led me to a life I simply couldn’t have imagined for myself when I moved into the YRRS. I had vague dreams, but being part of a supportive, nurturing, encouraging group allowed me to begin feeling safe and confident enough to take risks which led to bigger and bigger things. I have found my voice again. I learnt to reclaim some power which was taken from me at a young age and I didn’t have the language or understanding to articulate. Pip, consumer

Approaches such as process consent and prioritizing relational safety might be questioned by some ethics committees. This was not our experience, but it does occur, and is something to be mindful of. Ethics committees operate to a “protection principle” which can minimize opportunity for consumer empowerment as they balance care and control (Baxter et al. 2001; Gillard et al. 2010). Additionally, as an emerging approach within the academy that rejects the principle of objectivity, co-research is vulnerable to accusations of limited rigor and methodological validity (Gillard et al. 2010). Yet co-research highlights that rigor is contextual – it is reliant on a project’s chain of methodological reasoning (Gamble et al. 2018). In co-research, this is alignment between participatory principles and processes (National Health and Medical Research Council/Consumers’ Health Forum of Australia 2004). Our project explicitly aimed to amplify youth voices – our collaborative design to do this across the research cycle demonstrated rigor. In recognition that co-research is a deeply personal enterprise, we used reflection to purposefully engage emotion. Discussions to understand how we all influenced and were influenced by the process met subjectivity with research rigor (Gillard et al. 2010).

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Key Points

• Consent and safety are dynamic and negotiated. They need to be understood in relational terms. • Co-research rigor is indicated by the alignment between participatory principles and processes.

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Principles of Co-research

The previous pages have outlined some foundational political and ethical considerations of co-research. These foundations inform the principles that underpin genuine co-research. Without attention paid to these principles, there is significant risk of co-opting the language of “co-research” while perpetuating inequalities the method aims to dismantle. For example, only including consumer voices that those with power perceive as “useful” or “harmless” (Grey 2016). Regardless of their intention, projects that maintain traditional power dynamics are not co-research. Our reading of the literature (Slay and Stephens 2013; Carr and Patel 2016; Roper et al. 2018; Aldridge 2019) and our practical experience of co-research has identified these principles as essential to co-research: Principles of co research Generative redistribution of power and privilege Mutuality and collaboration Learning through “failure” Justice Equity

Openness and inclusivity Curiosity and reflection Responsibility and accountability Diversity and pluralism Relational safety

Paying attention to all these principles is important, but what they look like depends on the aims, needs, skills, and experiences of project participants. They will also be influenced by organizational preparedness and commitment to invest and engage meaningfully in co-research. In the section that follows, we show what these principles looked like for us but acknowledge that these may look different for other people, projects, and contexts. What remains the same is the commitment to exploring, negotiating, and enacting the mindset and power structures necessary to genuinely co-produce. If you are daunted about embarking on a co-research journey, do not worry – so were we! We offer these reflections on what helped and hindered our co-research in the hope they bring comfort, encouragement, or solidarity as you embark on your own co-research journeys. Reflection can humanize all participants, as we invite each other to witness our challenges and collaborate in their resolution. It is easy to get frustrated by the complexity of co-research without seeking to understand from where the frustration stems – yet as trust and relationships build, you can sit in the discomfort longer and use it to generate questions that your co-researchers with their diverse knowledges can help answer (Gamble et al. 2018).

10.1

Care for the Process and Each Other

The development of real relationships between all team members is a foundational and ongoing task (Clarke et al. 2019). Without these, it is impossible to create the safe to fail, learn, and grow culture that co-research requires. Attention needs to be paid to the factors that both enable and inhibit the development of these relationships. Age, position, professional experience, personal history, culture, education,

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and role clarity are just a few of the factors that influence how safe people feel to participate. Being a very introverted and awkward person, I never felt confident in speaking, especially in a group of people. Situations where people asked for my input increased my anxiety about speaking out in case my opinion was disagreed with or invalid. While it is still difficult, I am able to share my thoughts and desires in the steering group and have found (quite surprisingly) that I do enjoy talking and trying to create discussions in a group setting. It’s still surprising to me when I suddenly speak out, as if I’m trying to make up for lost time and hearing my voice without muttering, attempting to maintain eye contact and appearing confident. The level of respect and care I am provided by staff is something I did not know was possible (nor the idea of participants being involved in a group revolved about what matters for them). I am so happy to see how much of a difference we can make together. Michael, consumer

Collaboratively developed rituals are one way to build relationship and safety (Clarke et al. 2019). They can foster connection and influence the culture and tone of the project. We used humor and playfulness to create and sustain a welcoming culture – including egg puns, picnics, zoo visits, karaoke, snacks, and light-hearted icebreakers that did not always deepen our knowledge of each other but united us in giggles. We catered meetings, did welcoming activities for new participants, held informal catch-ups, and worked together to explore complex concepts. For us, it was important to balance the silly with the serious. This mixture of formal and informal activities made the process less intimidating and allowed us to gradually bring our more authentic selves. These activities indicated that we could be playful, while being vulnerable and contributing to a robust research process. Humanizing the process and its participants tempered individual and collective fears, and as we built trust in each other it strengthened our trust in the process. This allowed us to take risks, share more of ourselves, and deepen the pool of experiences the research drew on. Being involved in co produced research has impacted my life because it has changed the narrative of the value of my voice. During my time on this project, I stopped seeing the psychiatrist who dismissed my experiences and am now extremely selective with the mental health professionals I see. Anyone who cannot acknowledge and work towards equalizing the inherent power imbalances in the therapeutic relationship has no place on my treatment team. It has helped me immensely relationally within my personal life as I no longer view myself through the lens of the well known image of a child who needs to be seen and not heard. This is something that was built into my way of knowing the world as a child experiencing a multitude of traumas, but also something that I am predominately able to let go of today. I now work as a lived experience researcher, with a particular interest in being curious on expanding the ways we allow for experiences and knowledge to be shared within research. Bec E, consumer

Our project ran for over 3 years, and during this period, the membership of our steering group changed. As people came and went, the centrality of relationships to the co-research process was reinforced. Original members reflected on how overwhelming participation felt at the start, which informed their gentle and empathic approach to welcoming new members. A co-research induction picnic, regular

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project updates, and relationship-building activities ensured that newer members grew their understanding of the project’s aims and progress, alongside familiarity and trust with other members. And as members left, we acknowledged the loss of their expertise and unique contributions, and noticed the impact this had on our relational dynamic.

10.2

Be Clear when You Can; Otherwise, Make It Up and Learn Together

Co-research requires a delicate balance between structure and not knowing. Some guidelines are necessary so people have some idea of what they are getting into and can authentically participate (Stewart et al. 2019), but not so many that the agenda and approach feels set and that people cannot contribute to it. We established the principles of how we wanted to collaborate early on to guide this balancing act. We did not always get it right, but through returning to our principles of transparency, accountability, and learning through “failure,” we made space for people to guide and influence the project and what they wanted to get out of it (Checkoway 2011). The first meeting was stressful. We felt anxious and underqualified. We didn’t know what we were doing and were very unsure of our role, what was wanted or what was expected. We were unsure how to behave, what it meant to be professional. We liked when it was agreed that this was a place we could say anything, negative or positive. Michael, consumer

Co-research is an approach where you learn through doing. Recording process and personal reflections is a rich way to capture experience, deepen collective understanding, highlight new possibilities, and facilitate learning (Faithfull et al. 2019). Given co-research is an emergent method, reflecting-for-learning brings personal and systems benefits.

10.3

Co-research Should Not Be Easy: Messiness and Discomfort Are Inevitable

Co-research can be messy and uncomfortable. It is alright to feel unsure, uncertain, unskilled. We found that naming these challenges helped, as more often than not, several people were feeling the same. Naming challenges allowed us to address them and work through solutions collectively (Carr and Patel 2016). Expertise and ideas were offered tentatively with invitations for the team to consider, adapt, or reject.

10.4

We All Participate Differently and Need Different Forms of Support

It was important to ensure that everyone’s participation style and hopes for involvement were respected. Over time, some people became close friends, others built

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strong collegiate relationships, others focused their energy on meetings. These are all fine. We asked everyone what they hoped to get out of it, how they wanted to participate, and we checked intermittently to see if the project was delivering this. We collectively created a culture where everyone’s participation style and hopes were welcomed. I remember our first conference. We tried to pre plan to work out how much support everyone needed. I forgot how familiar I have become with conferences and how foreign and weird and overstimulating they actually are. The first time is hard, and it was definitely a bit of a struggle for us all. The feedback was great though and we all got to know each other better. We built skills and confidence in our shared presentations. Audience members frequently commented on the obvious bonds and respect amongst our team. We also came to know more about each other’s needs; what we found stressful and what helped each of us. We made a point of looking out for and after each other. Priscilla, researcher

Just as people have different hopes and approaches to participation, they also have different support needs. In our project, consumers needed practical supports and time to find their feet but wanted to be treated as capable professionals. They had established their networks of emotional support and did not need to be looked after. The practical support I received whilst in hospital to stay involved was appreciated. It meant I could be authentically myself in the moment struggling with my mental health, but still working towards things that were important to me. Bec E, consumer

Participation brought mutual benefits to everyone – as we all grew together in the process it brought a deep sense of belonging. The process was healing too – it felt important to be a part of something that felt like it was redressing some of the traumas that the mental health system has and continues to perpetuate. Participating in a relational process founded in shared values wove deep emotional ties and a sense of collective agency and accountability. It has been refreshing to see and experience professionals acknowledge their own challenges and insecurities and uncertainties. It helped humanize them as well as my own experiences. It helped allow me to realize, that, maybe my anxiety is more extreme than some other people in the room, but people are also confused and unsure and maybe that’s normal and ok. It also helps to demonstrate you can be unsure and still be effective at your job, still have a lot to offer. Pip, consumer

10.5

Travel and Present Together

We have presented our research together at multiple conferences, some requiring interstate travel. We committed from the outset that all presentations would be co-presentations, with young people always involved. We were all nervous as we embarked on this journey, but getting to know each other better, bit by bit, meant we

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were able to build trust, share more of ourselves, be vulnerable, and rely on each other for support. We acknowledged and respected that travel and negotiating public transport could be stressful for some of us at times. Travelling and presenting together exposed some vulnerabilities, and as we asked each other for support, our trust in each other grew. Time spent in meetings allowed us to get to know each other but it was also important to have time in the car to and from meetings just chatting about YRRS’, kids and dogs, normal things. We all started to share things about our lives. Travelling to our first conference together in Sydney was really stressful but was a shift in getting to know each other. We all struggled but it wasn’t an issue everyone was kind and encouraging. It was good to get feedback on how useful the things we said in meetings were. Often, we felt like we rambled about irrelevant stuff and would just get distracted but they shared how helpful it was. We were anxious that we were being trusted to do the work but also grateful. Pip, consumer

10.6

Pay People

Real relationships are founded on a recognition of each other’s worth. In this professional setting, it means paying people for their expertise. Researchers should consider the legal, ethical, industrial, and tax implications of the payment approach before project commencement and revisit it throughout (Carr and Patel 2016; Justice Connect 2018; National Health and Medical Research Council 2019). Researchers should be proactive about setting the terms of payment – requesting payment as a consumer can be daunting and viewing your perspective as expertise worthy of payment can take some getting used to. Researchers should clearly outline that all project-related labor classifies as paid time – that it is not just the meetings people attend, it is also preparation work including reading, thinking, and administration. And be considerate – tuning into a task takes time – employees are paid to do this, but consumers might not consider this billable. Consumers might log fewer hours in line with expectations of what amount of time seems “reasonable” for a task, when it may have taken longer. Good co-research takes time and resources – if you do not have the finances to support this, be honest, and explore what amount of participation you can include. Cancelling scheduled meetings at short notice can devalue people and break trust – it should be avoided. If it cannot, non-salaried co-researchers should still be paid in respect that they may have rescheduled appointments, work shifts, or made other logistical commitments to attend.

10.7

Jargon, Acronyms, and Assumed Knowledge Alienate

Research processes might be new to co-researchers; explaining them creatively and practically can demystify concepts and approaches and build relationships in the

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process. Teaching research methods allowed consumer and staff members to engage genuinely in the research and build their skills and capacities as researchers. I wanted to bring everyone in the research team into the qualitative analysis process but needed to make it accessible and ensure everyone could contribute. I decided to try using Lego in an analysis workshop as a way of simply illustrating analytic processes; that qualitative analysis involves breaking concepts down (coding), sorting according to similarities and differences, and categorizing (identifying properties), before rebuilding into bigger ideas (themes) that are constructed by the researcher(s). As we sorted and constructed, we discussed how there were no right or wrong ways of constructing, that constructing takes time and deliberation, and sometimes involves deconstructing and reconstructing in new ways. The young people and staff involved described having enjoyed the process and feeling more confident about data analysis as a result, that we could all play a valued role in data analysis. The process demystified the complexity of data analysis, allowed everyone to bring their expertise to the table, and created a sense of safety and worth for all. Priscilla, researcher

Simple, everyday language should be used to allow all team members to participate (Carr and Patel 2016). It is important to pay attention to people’s ideas, not the language used to convey them. Where formal academic language is required, simple explanations should also be provided. I have seen some researchers equate lived experience contributors’ lack of knowledge about research terminology or process with a lack of value. This is false, and it is a cop out way to minimise the voices of those who are already too often silenced or dismissed. I did not feel this way in our steering group, and it allowed me to ask questions knowing I would not be chastised or judged negatively for them. I also felt that I could share reflections using language that felt comfortable to me, without forcing an academic tone, which sometimes meant our meetings felt more like a conversation than a strict following of an agenda. To some researchers, this might feel uncomfortable and unproductive, but I encourage you to stay in that space and remain knitted to curiosity, for those “unproductive conversations” often contained insightful, reflective gold. Bec E, consumer

10.8

Consider What Expertise Your Co-research Team Needs

Be honest about what skills and knowledges you have. This includes methodological and subject matter expertise as well as curiosity, self-reflexivity, patience, an awareness of power dynamics, and a commitment to doing things differently. As you identify gaps, partner to draw on the expertise of others. Since co-research was new for us, we approached an organization with a long history of consumer participation, research co-design, and trauma-informed approaches. We recruited both YRRS consumers and a lived experience researcher, noting their complementary yet different perspectives and expertise. Engaging these additional researchers early on strengthened our project immensely. We recruited consumer members through an expression of interest process. When recruiting, we sought passion not formal qualifications or expertise. We considered

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safety – both our organizational duty of care to consumers and how we could temper the disappointment of unsuccessful applicants. Everyone could have brought something valuable, so it was hard to decide. The unsuccessful calls were awful I felt like I had invited another opportunity for them to be rejected. I knew they had put themselves out there with their applications and that I was saying “no we don’t want you”. I was acutely aware that this was a familiar feeling for many. I think the selections I did make were stars not that I knew this at the time, but it pays to trust gut feeling. The phone calls telling the young people they were successful were a joy, but I felt met with almost disbelief like rejection was expected. Priscilla, researcher

Expertise evolves: as our project continued, consumers developed expertise as lived experience researchers, and we all developed our expertise as co-researchers. We also deepened our awareness of what we do not know. Employing an intersectional lens generated reflections about how and why certain perspectives were underrepresented, and how this might be addressed in future. Our identities as researchers transformed. This kind of co produced research is rewarding, worthwhile and powerful. It can be challenging to ensure it is not tokenistic, but it is far from impossible. Everyone really does have skills, experiences and insights to contribute meaningfully. Our group worked well bouncing ideas off people combining our ideas to create something we couldn’t have done alone. Pip, consumer

Other sorts of expertise were also recognized. For example, Millie the dog was a crucial member of our team. When we first approached sites about the research, she was a living, breathing icebreaker – making things feel less intimidating and helping build trust and connections with young people. Dogs can lighten the atmosphere, start conversations, and act as a sensory support to help calm nerves.

10.9

Involve Key Stakeholders Throughout the Process

Unlike knowledge translation approaches which apply research from one context to another, co-research generates knowledge directly from its context (Greenhalgh et al. 2016), which amplifies the importance of involving key stakeholders. As part of recruitment, we aimed to build real relationships with the young people and staff at each YRRS by spending time at sites, joining group rituals and outings, and sharing promotional materials like posters and zines. Spending time at each site gave researchers a deeper understanding of their unique contexts and cultures. Yet as recruitment ended, and analysis increased, contact with sites decreased and this weakened those relationships. This was likely compounded by limited staff representation on our steering group and with membership changes over time. This made implementation difficult, as we did not have site-based champions to help us understand how best to share our findings and honor each site’s unique culture.

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We heavily relied on service managers as our conduit to sites, and while they were important allies, it added a layer of disconnect between the research team and sites and meant that messages could be misinterpreted or not conveyed at all. Regularly reflecting on how project design and membership support your aims and strategy, especially as needs evolve, may reduce the likelihood of experiencing similar challenges. This is particularly true of intra-organizational projects where access to stakeholders may be easier than in broader studies.

10.10 Making Decisions Without Key Players in the Room Can Cause Problems We learnt that not including all the researchers in some key decisions was a big mistake. When researchers introduced the findings to staff, they challenged some of the wording. Researchers negotiated to make a minor change to the wording but when this decision was shared with the steering group, consumer members noted that they felt this decision diminished their sense of control and expertise. While research findings and interpretations often involve compromise, it is better to have everyone in the room so they can be part of the compromise process.

10.11 Representative or Representativeness? We wanted to ensure that the young people on the steering group were able to speak their own experience, in their YRRS community, without unreasonable expectations of representativeness which might affect a sense of authenticity (Scholz et al. 2017). This helped people to feel known for their own experiences and expertise. Representativeness was enhanced by recruiting consumers with different experiences of different sites, and whose interactions and discussions with peers informed the lens they brought to the steering group. A critical mass of young people helped to shift the balance of power to support authentic participation (Stewart et al. 2019).

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Key Points

• While common principles should guide your approach, the process and outcome will look different depending on the skills, interests, and experiences of project participants. • Co-research is challenging on personal and political levels. It can be messy. Figuring things out together can build trust, ownership, and strengthen relationships. • Co-researchers need to care for the process, by collectively exploring what things may help or hinder full engagement. • Co-researchers need to care for each other, noting that everyone has unique strengths and needs.

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Conclusion and Future Directions

Co-research is socially inclusive research. It is about learning together, action, and justice. It is about breaking down the paradigms and processes which work to oppress people and that prevent lived and living experience being understood as knowledge. Keeping people as objects of study rather than as agents of inquiry perpetuates oppression and marginalization. In co-research processes, you walk alongside each other, and you keep on walking. Your journey does not end when the funding runs out or the final report is published. Your obligations to each other endure. The outputs of co-research are not just the publications or final reports, it is the ethical commitment you have for working differently; for equalizing power; for shifting what has been before rather than soothing its impacts. And you do not just stop doing that – it is an ongoing journey. You keep on walking. Our project had a curious, uncertain beginning, supported by a commitment to figuring it out together. We learnt that it was okay not to know, and we trusted in each other to figure it out. Inclusion was more than making space for different voices. It was figuring out how to listen, owning our mistakes, being brave, and using our principles to keep focused on our intentions. We emerged transformed, with a deeper awareness of how certain voices are excluded from what counts as knowledge, and how we might intentionally pool our power and expertise to diversify what voices are heard. This pooling of power represents a key future direction for co-research. We are excited by debates around the nature and function of allyship and alliances (Russo et al. 2018; Happell and Scholz 2019) and the questions they raise: What do alliances actually look like? What are they aiming to do? How will they be variously enacted? Who do they include and on what terms? Who gets to measure “success” and who benefits? How are they bound by mutuality: what is the common ground, and how is contested ground negotiated in ways that coordinate diversity while neutralizing power imbalances (McNamee 2013)? On what terms do they flourish? What does solidarity entail? Whose experiences remain marginalized and how will this be addressed? Are “accomplice” or “co-conspirator” terms that better define ways of engaging to unsettle the status quo (Graham 2019)? We believe a deeper exploration of questions like these will strengthen the foundations of a genuinely plural and collective mission to agitate for transformative change in knowledge production.

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Part II Social Inclusion: Methodological and Ethical Considerations

The Messy Realities of Inclusive Research Personal Reflections

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 The Authors and How They Wrote This Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 The Research Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Why Do Inclusive Research? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 The Academic’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 A View from the Bridge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 The Activist’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 What Makes It Easier? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 The Academic’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 A View from the Bridge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 The Activist’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 What Gets in the Way? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 The Academic’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 The View from the Bridge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 The Activist’s Answer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions in Inclusive Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Regrettably Alan died during the COVID epidemic of 2020 21. He was 50 years old. He did not live long enough to see this chapter in print. A. Armstrong Carmarthen, UK A. Collis Barod Community Interest Company, Carmarthen, UK J. Walmsley (*) Open University, Milton Keynes, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_15

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Abstract

This chapter is based on a conversation between three people – Alan, an activist researcher with learning disabilities, Jan, an academic researcher, and Anne, who describes herself as a bridge. The chapter discusses different perspectives on three questions about inclusive research: Why do it, what helps, and what gets in the way. The chapter considers what it means when people bring different maps of the world to the job of research, and why it is important to have a “bridge,” someone with a foot in both academic and learning disability worlds. The chapter concludes that until people with learning (intellectual) disabilities have a place inside the academy, inclusive research will continue to be a struggle. Keywords

Inclusive research · Messy reality · People with a learning disability · Intellectual disabilities · Barriers

1

Introduction

The introduction is in two parts. The first part introduces the authors and tells how they wrote the chapter. It explains why they wrote it the way they did. The second part sets the scene for the chapter by reviewing, briefly, the literature on inclusive research with people with learning disabilities. (The authors know that in this international book you prefer them to use the term “intellectual disabilities.” But they are not comfortable with that description and have chosen to use “learning disabilities” in the chapter itself. To help people across the world to find the chapter, however, “intellectual disabilities” are used as one of the keywords.)

1.1

The Authors and How They Wrote This Chapter

The three authors have worked together to do research. Alan is an activist researcher with learning disabilities. He has spent many years working in the People First and self-advocacy movements and has been part of Barod Community Interest Company (Barod) since it started in 2013. Anne has acted as a bridge between academia and activism most of her life but feels she belongs fully in neither. She is currently doing a PhD having been a cofounder of Barod and, until October 2020, one of their research team. Barod itself is a cooperative set up by self-advocates and allies who met through All Wales People First. Barod’s strapline is “spreading ideas, changing attitudes,” and research is one way they do this. Jan is an independent researcher who has been thinking about, doing, and writing about inclusive research since the 1980s. They first met when they all attended a seminar about inclusive research run by Melanie Nind, probably in 2012. Alan writes about this meeting later in the chapter. But they only began to work together in 2017, when Barod won a contract to do some research in Wales to help self-advocacy groups to evaluate their projects. They

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called this the Toolkit project. They wrote about it in an article published in the Journal Disability & Society (Armstrong et al. 2019). They decided to write this chapter as a conversation between Alan and Jan about being, respectively, academic and activist researchers. Anne offered to act as the bridge between them, part interviewer, part interpreter. They chose to write the chapter this way as it was the most inclusive way they could think of coauthoring. It also allows their three distinctive voices to be heard, and this bringing together of voices is one of the distinctive features of inclusive research. The audience in mind was people starting out on doing participatory, inclusive, or coproduced research and what the authors think they need to know. They had planned to meet in May 2020 to do this. But COVID-19 got in the way. Alan did not have the technology to do this remotely, so everything went on hold. Finally, in July 2020, a way was found for Alan to get on-line. Anne and Alan met, socially distanced, at an outdoor café because they were not allowed to meet indoors. They shared Anne’s laptop. Jan was with her laptop at home. They Zoomed. Unfortunately, after an hour it began to rain. They had to abandon the meeting – AND the recording did not work. But Anne had made notes. And then, breakthrough, in August Alan was allowed back into the office. So they had another threeway zoom, and this time the recording worked. Then they each went off to write their bits. And this is the result. The chapter answers three questions they asked themselves about inclusive research. As you read, you may wonder why Alan’s answers always come last. Surely as good inclusive researchers, his voice should be heard first as a mark of respect and to set the tone and scope of debate. Instead, Alan has the last word. He heard and reflected on Jan and Anne’s answers then gave his perspective. They believe, as someone whose voice has often been silenced in the academic world, on this occasion he needs the final word – but first, some context setting.

1.2

The Research Context

This chapter is about research where people with learning disabilities work alongside academics to do research. This sort of work has many different names: inclusive, coproduced, and participatory. These are just a few. The chapter uses the term “inclusive research,” just to save words. Inclusive research emerged in England and Australia in the late twentieth century, alongside deinstitutionalization, and the emergence of self-advocacy, and a discourse of human rights – Nothing About Us Without Us (Walmsley and Johnson 2003). It is research where people with intellectual disabilities work alongside researchers, no longer objects of research, but active investigators (Walmsley and Johnson 2003; Nind 2014; Bigby et al. 2014). There is much published on inclusive research. Many people write about the relationships between activist and academic researchers (Walmsley 2004; Butler et al. 2012; Bigby et al. 2014; Frankena 2019; Chalachanová et al. 2020). They talk about how these relationships come about, how they can really share power and decision-making, and how to decide who does what. Some people focus on the

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relationships between individuals and organizations – including in the article the authors wrote together (Armstrong et al. 2019). Some articles discuss teamwork and team-building (e.g., Björnsdóttir and Svensdóttir 2008; Butler et al. 2012; Strnadova et al. 2014; Woelders et al. 2015). Most writers agree that success in inclusive research depends on building close trusting relationships, where people spend non-work time together, have fun as well as focusing on the task in hand. Nind and Vinha (2014) identify factors that are important to relationship building: talking things over, sharing skills and knowledge in working things out, sharing a purpose, spending enjoyable time together, and opening new opportunities for each other. Differences in power and experience need to be handled through providing support, lengthy negotiation, and recognizing interdependence. Woelders et al. (2015) argue that people often have an idealized version of inclusive research, which can lead to disillusionment. Liz Ellis (2018) gives a good example of this when she discusses the challenges of enabling novice activist researchers to influence the research questions and approach as research starts. She knew a lot, they knew a little, and they were not in a position to make good decisions. Most authors agree that efforts need to be made to create a common language. Most of the literature about communication and inclusive research focuses on ways academics can use to communicate better with people outside of academia. Typically, this would include the need to simplify their language, reduce jargon, and spell out acronyms (see Ellis 2018). In addition, there is a growing literature for academics about working with people who communicate without spoken or signed language (Nind and Strnadova 2020). Some people have written about often hidden aspects of inclusive research, whether relationships really can be equal (Walmsley 1997; Walmsley and Johnson 2003; McClimens 2008). One such topic, examined by Iva Strnadová and Jan Walmsley (2017), is who writes the paper. This is one reason for explaining the process and challenges of coauthoring this chapter. There is also the challenge of operating in a world where people with learning disabilities are routinely excluded. Jan Walmsley, one of the authors of this paper, noted as long ago as 1997 that the strong partnerships and generous funding that had made it possible to coproduce an Open University course were not sufficient to sustain the momentum in an unequal world. She wrote: “The barriers to inclusion were only temporarily dismantled, now they are back in place” (Walmsley 1997, p. 70). This is a theme returned to later in this chapter. However, there are some aspects which have been little written about. It is difficult to find inclusive research literature that tackles the wider challenge of researching together as people who bring different maps of the world to the research. For an exploration of this, one has to look beyond inclusive research to decolonial and cross-cultural research literature. It is here that the chapter will make a particular contribution. The authors identified three questions they would have liked to ask experienced inclusive researchers when they were just starting:

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• Why do inclusive research? • What makes it easier? • What gets in the way?

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Why Do Inclusive Research?

2.1

The Academic’s Answer

Jan has been doing something like inclusive research for more than 30 years now. She wrote, with Kelley Johnson, a book about it in 2003 which is still widely cited (Walmsley and Johnson 2003). And she is still learning about its value, and about how to do it well. She thinks she started out of a sense that it was unjust to exclude people with learning disabilities when disabled people were loudly claiming the right to not only do research, but also to decide the research agenda (Oliver 1990). It was important as a statement, a symbol. Once Jan started, she began to appreciate that it was much more than symbolic. Activist researchers help to draw attention to what is important to people with learning disabilities which academic researchers might not even notice (for example, helping self-advocacy groups learn how to evaluate their own projects (Armstrong et al. 2019)). They give access to ongoing projects, to new worlds academics need to access, but do not always know how (see Armstrong et al. 2019 for details). They help frame things to be accessible and can give instant feedback on what is and is not easy to understand. But beyond that, it is within the privileged arena of research that they can together pioneer ways of being inclusive which have important lessons for the wider world. To give a simple example, plain language research summaries were pioneered by an inclusive team at the University of Bristol’s Norah Fry Research Centre in their Plain Facts series (http://www.bris.ac.uk/Depts/NorahFry/PlainFacts/NewPlainFacts/ html/about.html), and it is now routine (in the UK at least) that documents aimed at people with learning disabilities are in “easy read” or plain English. Jan tried to put the value of inclusive research into the public arena in a paper she wrote with her academic friends, Iva Strnadova and Kelley Johnson (Walmsley et al. 2017). But as Jan mentioned earlier, she is still learning about the value of working inclusively, and still finding different ways to do it. In 2020, she was part of a noninclusive university team thinking about ways to measure whether belonging to a self-advocacy group improves well-being. They found a well-validated tool which they thought might be suitable. They invited three self-advocacy groups to review this tool for them. They asked them to tell them whether it would work with selfadvocates. The three groups were unanimous that it is not suitable. Here is a flavor of what they said: The risk of emotional harm is too high to make it usable (Barod self advocate) As of right now, the survey is currently not allowing me to give straight answers that will stay accurate. (Sunderland People First self advocate)

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They abandoned the idea of using this tool. Instead, they will seek funding to work alongside self-advocates to develop an appropriate tool. Without an inclusive approach, they would have run down an entirely unsuitable road.

2.2

A View from the Bridge

Inclusive research is too often the only option if you have a learning disability and want to carry out research that has value within the academic world. As Jan has pointed out, people with learning disabilities have not (yet) found a place within the academic world in their own right. For someone with learning disabilities, the question of why do inclusive research becomes, quite simply, why do research? Anne’s personal reasons for doing research are a mix of intellectual curiosity, a desire to change the social world, and a possibly misguided belief that those with the power to make strategic changes – such as government policy-makers – listen to evidence from “proper research.” From what Anne knows of researchers and wouldbe researchers with learning disabilities, their motives for doing research are similar to Anne’s. When Anne has chosen to carry out research with academics, it has been termed collaborative research. As collaborators, her academic colleagues and she are “different but professionally equal.” She is treated as someone who has the potential to become an academic. But what about her colleagues and friends with learning disabilities? Her colleagues with learning disabilities are not seen as potential academics. Inclusive research is currently the only way that they can join the academic world. What for Anne are the two questions of “why do research?” and “why do inclusive research?” are essentially one and the same question for them. One fundamental reason for doing inclusive research, therefore, is that it is the only tool for addressing the exclusion of people with learning disabilities from the academic world. And yet it is also a very partial tool. Particularly where research takes place within a university space, it has inequality and unsustainability woven into its very fabric. This is not a slight on the ethics or commitment of academic or activist researchers; it is a consequence of trying to operate within a system that is not designed for inclusive research. Both Jan and Anne will say more on this in answer to the final question about barriers to inclusive research. This is not Anne’s only basis for choosing inclusive research. In order to learn and function in a social world, they need a way to make sense of the world. Depending on your academic discipline, you may be familiar with the idea of cognitive maps, schema, knowledge architecture, or conceptual frameworks. From Anne’s own sociological background, she is more familiar with the ideas of discourse. What they share is a way of thinking about how people make sense of the world around them. Barod conflates them and talks about people having a “map of the world.” As researchers, they bring their map with them as they do their research. This means Anne chooses to do inclusive research for two very important reasons. First, she believes that inclusive research increases the quality of the research by bringing together people who are insiders and outsiders of each others’ worlds into a

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single research team. Just as someone with a learning disability cannot (currently) be an insider of the academic world, neither can an academic do insider research into the lives of people with learning disabilities. The practical benefits of having an insider who acts as a guide and gate-opener for the community being researched are well documented (e.g., O’Reilly 2009). Inclusive research brings all these benefits. Part of what makes someone an insider or outsider is the way in which they make sense of the world. Alan, Jan, and Anne make sense of the world from the perspectives of activist, academic, and bridge, in addition to having their unique personal perspectives. Imagine only being able to bring one of these perspectives to bear on whatever is being researched. It seems only reasonable that if several different perspectives are brought to bear, a fuller picture will emerge than if the academic perspective is the only or dominant perspective. For me, nowhere is the power of inclusive research more obvious than in data analysis/interpretation. Multiple perspectives give a richer, deeper understanding of the data than any single perspective. As Braun and Clarke (2006) frequently note, themes do not “emerge” as if waiting, hidden, to be revealed. They are constructed by humans who see the data in terms of their “map of the world.” For example, she was supposed to be supporting a group of people with learning disabilities to analyze data they had collected. She overstepped the mark when preparing the data for analysis and began grouping data based on what she saw as a theme. Fortunately, Alan pointed her error out before she went back to the group. When they analyzed the data, their themes bore little relationship to hers. And this leads neatly to her third point. Whose knowledge matters most? The answer determines whether research contributes to epistemic justice, or perpetuates epistemic injustice. Fricker (2007) is credited with coining the term epistemic injustice. She describes two forms of injustice around people’s knowledge. Testimonial injustice refers to the presumption that some people’s voices and knowledge carry more credibility than others. Traditionally across society, the knowledge and voice of the academic has been treated as more credible than the knowledge and voice of someone with learning disabilities. Similarly, since the rise of evidence-based policy-making, the policy-making world routinely values knowledge gained from academic research more highly than knowledge gained from lived experience. The former is more likely to be accepted as “evidence,” whereas the latter is more likely to be dismissed as “anecdotal.” Inclusive research can replicate this form of injustice, or challenge it and instead become a site of epistemic justice. This makes it important for all inclusive researchers, but particular academics, to be aware of how knowledges and voices are valued within the research process. Hermeneutic injustice refers to people not being able or not being allowed to interpret their own lives. It may be that there is a lack of knowledge, or a lack of vocabulary, to describe an experience. It may be that, despite the existence of a concept and vocabulary, someone is told that it is not what has happened to them; their interpretation of their own life is wrong. Inclusive research is an approach to research that is well placed to challenge hermeneutic injustice. Academic inclusive researchers routinely support people to interpret their own lives (see Dorothy Atkinson’s work with Mabel Cooper to unravel her life story and its meaning

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(Atkinson and Cooper 2000)). They can then amplify people’s voices and interpretations by opening doors that would otherwise be closed. Alan could not have spoken at a National Centre for Research Methods Festival of Methods (Armstrong and Collis 2014) if Professor Mel Nind had not opened that door. He would not be a published first author if Jan had not encouraged Alan and Anne to coauthor a paper with her for Disability & Society (Armstrong et al. 2019). While there is growing literature about the power of inclusive research to challenge hermeneutic injustice, it is still worth reading and applying lessons from feminist and other identity, standpoint, or perspective research. These literatures explore the exercise of power within research relationships, and in how people’s lives are represented in and through research (e.g., Finch 1993; Pickering and Kara 2017; Roof 2012). A strong reason for anyone to choose inclusive research, therefore, is that it brings together people who make sense of the world using different “maps of the social world” in a way that challenges epistemic injustice and begins to create epistemically just knowledge.

2.3

The Activist’s Answer

It needs people like Alan and people like Jan working together. It is easier to sort out doing the research. The research is better quality. And the research will not get left on the shelf so much. It is easier to do the research because other people with learning disabilities will trust Alan more than an academic. So it is easier to get people to take part. Here’s why the research is better quality. If it is research about people with learning disabilities, it needs people with learning disabilities doing it. That person has the experience. The authors know that you need partnerships. What they bring is knowledge and communicating with people so that they get an idea what the research is about. If they do not know that, how can they really give informed consent? They know the right questions to ask because they can meet people where they are at. They may not know you, but if you explain your background, they will be able to work out what sort of person you are. They will answer the question differently to Alan to a person like Jan. They understand what people are saying because they have had the same sort of experiences. They move in the same world. What the academic does, what they bring, is writing and knowing about the academic world of universities and how to get round things, like sorting out ethics and publishing. Academics can do all the reading about what other researchers have done. Especially if they are going in front of the funders or the university, they will be able to explain it more than Alan can because they are in that world. Alan wants to know stuff, but he cannot read all those papers. If he has to read them, he cannot get his head round it. But if someone reads it and explains it in a way that is better and clearer to Alan, then Alan can understand it fine. When you are researching on a topic, you have to know what you are talking about. Jan has one way of knowing things. Alan knew things a different way. They have to listen to each other to make sure they know that they are on the same

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pathway. So when they did the Toolkit research, Jan knew some of the questions to ask because she has done research before and she has read other people’s research. And Alan knew some of the questions to ask because he has been doing selfadvocacy for a long time. Alan has met a lot of other self-advocacy groups. So he knows what sort of thing is important for self-advocates. So Jan and Alan had to talk together, and try out the questions and make changes. And then they got questions that meant they did good research. Some academics act like all Alan can do is research about learning disabilities. Yes, he had got a learning disability so he knew about that. But he knows about other things too. It is easier for him to talk to laborers than for Jan to talk to them. Neither of them are laborers. But he could be, and they can see he could be one of them. So it is easier for them to talk to him than to Jan. Here is why the research will not sit on the shelf. If you ask the right questions about the right things, then what you find out will make a difference to people’s lives. But you need time to tell people about what you find out. That is something he wants to talk about when he answers the last question.

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What Makes It Easier?

3.1

The Academic’s Answer

Jan has explained why she thinks inclusive research is a good approach, why it adds value. Factors which make it strong are organizations led by people with learning disabilities to work as partners, or even as the leaders of the research. In England and Wales, they are fortunate to have a number of such organizations, including Barod where Anne and Alan work. Without too much difficulty, Jan found three groups to test the well-being tools. They did an excellent job, all of them. Jan has worked with colleagues in Japan and Norway who do not have many such organizations. Without such organizations, academic researchers are dependent upon individuals, and those individuals need their own support systems, both practical and sometimes even emotional (see Chalachanová et al. (2020), for perspectives from Norway). Good strong organizations led by people with learning disabilities can change the relations of research production, something Mike Oliver argued for back in 1990 (Oliver 1990). Jan has worked on two projects led by such organizations, and it was a very different experience to working in projects based in the University (see Walmsley and CEPF 2014; Armstrong et al. 2019). It put her in the role of a paid employee, answerable to the Disabled People’s Organisation (DPO), rather than answerable to the University and the funder. And of course, you need funders who are willing to pay DPOs to do research. This is unusual, but some fantastic work was funded by DRILL in the UK, which ONLY gave money to DPOs. And you also need academics, like Jan, who enjoy working in this way. It is not for everyone.

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A View from the Bridge

Anne would like to offer five tips.

3.2.1 Tip 1: Think About the Space It Takes Place Within In Anne’s experience, the easiest way to make inclusive research easier is to relocate it outside of the university space. However, this is not an option (yet) for most academic researchers. One of Anne’s roles in Barod has been to trawl academia for ideas that can help Barod to reframe their lived experience, and where Barod can help reframe academic ideas. Through this process, they defined four types of space that they feel impact on social interactions, including the social interactions of inclusive research: • Cognitive space – how one thinks and makes sense of the world • Physical space – the location or setting • Relational space – the written and unwritten rules for how people relate to each other • Institutional space – the written and unwritten rules that overshadow and constrain the potential options for the other three spaces All four spaces need to get working well if they want it to be easier to do inclusive research.

3.2.2 Tip 2: Think of It as Cross-Cultural Research In Anne’s experience, any lessons about making cross-cultural research easier will transfer across to inclusive research. Some of the glories and challenges of inclusive research only become apparent when you recognize its cross-cultural nature. There is a rich literature to be found in relation to decolonial and postcolonial research (e.g., Smith 2012; Ryder et al. 2020; Datta 2018). The language of this literature may be unfamiliar to inclusive researchers, but it is worth persevering and learning its language. 3.2.3 Tip 3: Get a Bridger If the research team involves people who are outsiders of each other’s worlds, it is essential to have someone who is comfortable and accepted as having a right to operate in both worlds. At a basic level, their role is to facilitate communication between academics and activists. This may include providing factual information that is known to one person but not another, advice on cultural matters, or rephrasing what one person says so that the other person understands what was meant. In inclusive research, activist researchers are often provided with support or come with a supporter (e.g., Chapman and McNulty 2004), but it is less common for equivalent support to be provided to academic researchers. Tacitly, this says that activist researchers require support, and the aim of support is to enable them to adapt to academic culture. It shows itself in training for activist team members delivered by academic team members, without similar opportunities for academic team members

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to be taught by their activist colleagues. It may also show itself by providing activists with Easy Read or accessible academic information, but assuming that academics can make sense of what people with learning disabilities say. The need for communication support is not one-way. Unless someone understands the map of the world in operation when someone speaks, they cannot understand the meaning of the words spoken.

3.2.4 Tip 4: Invest Time in Relationships and Team-Building Any research team will have frictions, misunderstandings, and disagreements. Academics who have worked in interdisciplinary or transdisciplinary teams will be aware that this increases the challenge of operating smoothly as a team. Inclusive research further multiplies the challenge. Two strategies are needed for successful inclusive research: reducing the challenge and overcoming the challenge. Both require time invested in relationships and team-building. As mutual understanding increases, there will be fewer miscommunications and irritations. As a shared reason for doing the research grows clearer and stronger, the willingness to overlook offense and work through frictions increases. There is rarely sufficient time in grant-funded research to build adequate relationships and teams, which means other ways need to be found to invest time before and between grant-funded research (Chalachanová et al. 2020). 3.2.5 Tip 5: Build Capacity Inclusive research requires people with learning disabilities and academics with inclusive research skills. Sometimes, there is a need to proactively build capacity among people with learning disabilities, both in numbers and in skills. Sometimes, there is a need for more academics with inclusive research skills. The need and focus of capacity building will differ by country and by research topic. Self-advocacy organizations may find it difficult to find academics who are willing and able to research with them in the way that the self-advocacy organization wants to work. Academics may be frustrated by their enthusiasm to research inclusively, but their inability to find people from the researched-world with the skill-set needed to become confident allies in the research.

3.3

The Activist’s Answer

You have got to build time to know each other. It takes time to do this. You have to do it each time it is a new team. You need to trust each other before you work in public. You need to know how they speak. You have to believe in each other’s ability. You need to know they will do what they are supposed to do. But also leave space to ad lib and be able to help each other out. When the authors did the Toolkit, they did this by doing training together. When Alan worked with academics from Southampton University, the authors had lots of planning days together before some of them went out to do workshops with them. The planning days meant they had worked out how to get on together and bring out

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the best in each other. The authors knew what each of them were good at, and what they did not like or did not do. When they think about methods, Akan knew what works well with group meetings of people with learning disabilities. He knew what they are used to and what most groups hate. And the academic knows what research methods are good for the sort of research they want to do. So they need to talk together about the methods. Then they get something that works for everyone. When they are talking as a team, they need to listen, and no interrupting. You need 50/50 to hear both sides of the story. You need to ask each other. You need to ask anyone who is quieter. It makes research easier if you have a team where you all have equal say. Alan found a team easier than working one to one. And it is easier if there is someone whose job is to help you all work together and make notes and get to places. And biscuits help, and breaks. Since COVID-19, they have been began to use Zoom. Zoom makes it much easier because they can work from all over the country. That means they can have teams from anywhere, and they can have participants from anywhere. It saves traveling and money. The research happens much quicker too because you do not have to wait and sort venues and things.

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What Gets in the Way?

4.1

The Academic’s Answer

The barriers are structural. In an unequal world, it is possible to set up inclusive research teams, but sustaining these is difficult. Most research is based in universities or similar large organizations. People with learning disabilities are largely absent from universities. In this sense, they are unlike people with other types of disabilities. Leaders of the disabled people’s movement, figures like Mike Oliver, Vic Finkelstein, and Sally French, were all employed in Universities when they did their seminal work. But universities exclude people with learning disabilities, except as temporary guest lecturers. So people with learning disabilities are not at the table when most research is initiated, discussed, and funded. Then, there is funding. Although many funding bodies require applicants to demonstrate “user involvement” or “co-production,” the process of obtaining those funds excludes people with learning disabilities There are many funding bodies which only award funds to universities. It takes a lot of work to obtain these funds, reading, consulting, and reviewing, and unless there is some seed, funding people with learning disabilities find it difficult to be part of that process, or even know it is going on. Alan said in their conversations that they need research that tackles the right problem in the right way. But if the aim is to enable the people who know the problem best to shape research, the odds are stacked against it.

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Similarly, with ethical approval, most things that move in academic circles need ethical approval. For example, Jan is doing some pro bono work with a self-advocate she has known for many years to interview leaders of self-advocacy in England in the 1980s. The authors want to capture their memories before they forget or die. But if they want to publish this in an academic journal, they have to obtain ethical approval. And for that, they need a university. Fortunately, they have a friend in a university who will help them steer it through in return for her helping a little and having her name on the work. They have no problem with that. But you see Jan’s point – lone learning disabled researchers might struggle to find ways to get ethical approval. Academic publishing is another area where it is assumed the person is an academic. They need an “institution,” probably an ORCID name too. You can get round this – many do – but nothing in the system encourages outsiders. Finally, Jan wants to raise the question of time. Building in the amount of time it needs to coproduce papers and reports is a big task, and it hardly ever happens. They can cite their own experience of writing the 2019 paper where they discussed how they worked together on the DRILL-funded project. This was not funded. They wanted to do it because they wanted their work to be taken seriously and a peerreviewed journal was, they thought, one way to do this. They reckon it took 11 unpaid days to write, submit, rewrite in light of comments, and submit again. They are pleased they did it. But if they were all academic researchers, employed full time, this could be considered part of their core job, not an extrafreebie which it was for them all.

4.2

The View from the Bridge

Anne is a latecomer to the world of inclusive research. She finds it easier to see the barriers still ahead than to see how far inclusive research has come. Of all the barriers she sees, she thinks they would reap most reward by overcoming the three she describes in her answer. They have considerable individual power to overcome the first two barriers, although it may take courage. The third, for her, is the most challenging because it requires institutional change.

4.2.1 Barrier 1: Ego It is tough, particularly in a competitive academic world, to leave your ego at the door. The drive to produce, to create impact, and to wield power within modern neoliberal universities is immense. Can you imagine willingly handing over power to another researcher? Can you imagine investing your time in something that you cannot use to further your career because you chose to allow someone else to be a first author on a publication, or a principal investigator on a grant bid? It is equally tough for activist researchers. Activist researchers are experienced and skilled at fighting for the right to be heard. What must it take to stand aside to make space for other people’s voices to be heard louder than your own?

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It takes a strong belief in inclusive research and strong self-identity to be able to step aside, leave your ego at the door, and prioritize achieving social change through research over self-interest. The future of inclusive research lies with those who can do this.

4.2.2 Barrier 2: Pretense Many involved in the world of inclusive research hold strong beliefs about how they want to do research. They hold strong beliefs about the kind of world and relationships they are striving to achieve. And at times, this may make them unwilling to be transparent about the messy realities. Worse, it can make them unaware of their own practices that run contrary to their rhetoric. Anne talks a good talk about equality, coproduction, and valuing different knowledges. She relies on her colleagues, particularly her colleagues with learning disabilities, to challenge her when what she does conflicts with what she says she is doing. 4.2.3 Barrier 3: Institutions and Bureaucracy In order to work together, people need the opportunity to meet each other and communicate with each other. Where people are located within an institution or organization, they will also need that institution or organization to have systems and cultures that enable them to work with people located outside that institution or organization. Most inclusive research takes place within a university context. By any definition of institution, universities are either institutions of themselves or part of the institution of academia. Institutions are powerful systems and structures, complete with bureaucracies that are designed to serve the purpose of maintaining the institution (Scott 2013). An institution has rules determining what is permissible to do, how it must be done, who has decision-making authority, and how decisions must be made. This means that any research about inclusive research cannot consider the actions of the people doing the research without also considering the institutional context of the research. A practical example is people with learning disabilities being automatically classed as “vulnerable adults” in relation to ethical approval processes. In addition to being discriminatory, it makes it challenging for an academic researcher to frame researchers with learning disabilities as equal colleagues. The authors have not yet tried to gain university ethical approval for research where the principal investigator has learning disabilities. As Alan once put it, “What they are saying is I need a safeguarding check as a researcher before I can research myself!” Until that changes, submitting an application with Alan as principal investigator seems pointless.

4.3

The Activist’s Answer

What gets in the way is people thinking they know best, and talking over you. It is them thinking they can tell you what to do and that you cannot do anything else. Like telling you what the research questions are, or telling you how to do the research, or telling you that they will do all the rest because you will not want to, or you cannot

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do it right, or it will take too much time. So that is about attitudes. Alan did not work with people like that. But he had seen it. What gets in the way as well is when people use jargon. Most of the time, Alan could understand when academics talk to him, but the first time he did not understand any of it. Anne said the same thing in different words. And Alan understood it then. So why not say it that way in the first place? He still did not know what they are talking about when they talk to each other at conferences and things. It is like Alan was not there and he was not part of it. Even after Anne and Alan presented together at a Disability Studies conference in England, people would come over and talk to them but were talking to Anne more than Alan, and she had to keep turning to him and keeping him in the conversation. Doing inclusive research costs money. One university told them they should go away and do it for free. They asked why they did not do it for free too. Even if you get the money, it is not enough to do much work getting your research off the shelf. At the moment, the Toolkit is sitting on a shelf because they do not have the money to go out and tell people and train people to use it. Alan did not know the answer to that. Except they need to think about that when they ask funders for money.

5

Conclusion and Future Directions in Inclusive Research

Inclusive research has perhaps, to this point, not engaged as fully as it might with some of the ontological, epistemological, and methodological debates and developments of qualitative research. When you see anything that says it is inclusive research, almost any approach to qualitative research could have been used. All the label really tells you is that the research engages both academic researchers and researchers from the community being researched. For Anne, the most important future direction for inclusive research is for inclusive researchers to engage more deeply with key qualitative research debates, just as feminist and decolonial research have engaged with them. One argument against this has been that ontology and epistemology are “too hard” for activist researchers to grasp, and therefore, to grapple with them would be exclusionary. Anne thinks this simply means that academic researchers have not grasped the debates sufficiently to find visual and everyday ways to explain key concepts. One argument for engaging more deeply in theoretical and conceptual work is that it would provide a challenge from outside academia. One of Anne’s roles as a bridge has been explaining things like poststructuralism, posthumanism, and critical realism to her Barod colleagues in a way that allows them to connect the concepts to their experiences and ways of making sense of the world. Their considered reflections would provide an intellectual challenge to theorists, if only there were a space within which their reflections could be heard. At this point, Anne, as the bridge, stepped back to allow the academic and activist to draw their own conclusions about the messiness of inclusive research, and their thoughts about its future.

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Their conclusion is that what they have called inclusive research is a valuable approach for many reasons. It offers a richness, a wider range of perspectives, and more ready access to the field. It is helped by strong organizations led by disabled people interested in research, and funders which are willing to direct their money to those Disabled Person’s Organizations (DPOs). This can change the relations of research production, by placing the academic as a genuine partner rather than the one in control who is generously including outsiders. Nevertheless, in an unequal world, it is hard to sustain a commitment to mutual respect. The money runs out, and the activists move on, leaving the academics to gather the plaudits of the conference and publishing circuit. If this has to change, they believe three things are needed: 1. Investment in building capacity among people with learning disabilities. It is not a matter of teaching them research skills, but supporting them to understand the academic world so that they can contribute. For this, more people like Anne may well be needed. 2. Opportunities for people with learning disabilities to obtain employment in universities. That way they will be round the table from the start – and after the end. This was Alan’s dream. 3. A change in a value system which prioritizes academic plaudits over real-world impacts.

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Qualitative Research and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Qualitative Inquiry and the Inclusive Research Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Participatory Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Visual Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Arts Based and Arts Informed Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Embodiment Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Digital Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Qualitative Researcher as an Inclusive Researcher . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter discusses the contribution of qualitative inquiry in social inclusion and its role in inclusive research. Qualitative research refers to “a broad approach” that qualitative researchers adopt as a means to examine the social contexts of people and their lives. The inquiry posits that people use “what they see, hear, and feel” to make sense of social experiences. Fundamentally, it is interpretive. The meanings and interpretation of the participants is the essence of qualitative inquiry. Qualitative research is valuable in many ways. It encourages researchers to hear silenced voices, to work with marginalized and vulnerable people, and to address these issues within asocial justice framework. The methods adopted in qualitative research tend to embrace the lived experiences of people P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] Z. S. Rice Camberwell, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_16

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who occupy a variety of social spaces, sitting neatly within the inclusive research approach. Qualitative researchers are seen as constructivists who attempt to find possible explanations for phenomena in the real world. Fundamentally, qualitative researchers look for the complexity of meanings that people have constructed in relation to experience. This chapter discusses the value of qualitative research, qualitative inquiry, and social inclusion. The chapter also covers inclusive qualitative research practices including arts-based methods, visual research, embodiment, and digital-based qualitative research methods that can enhance inclusivity in the research approach. The role of qualitative researchers as inclusive researchers is also discussed in the chapter. Keywords

Qualitative inquiry · Meaning · Interpretation · Social inclusion · Inclusive research method · Vulnerable and marginalized people · Arts-based method · Visual method · Embodiment method · Digital method · Participatory research approach

1

Introduction

Qualitative inquiry refers to “a broad approach” that qualitative researchers adopt as a means to examine experience and social situations of people. The inquiry is based on the position which argues that people use “what they see, hear, and feel” to make sense of their social experiences (Rossman and Rallis 2017, p. 5). Fundamentally, qualitative research contributes to the social inquiry which aims to interpret “the meanings” of people’s actions and behaviors (Bradbury-Jones et al. 2017). It is a type of research that embodies individuals as the “whole person” who are living in complex and dynamic social milieus. Qualitative research has been adopted extensively in the social sciences, particularly in anthropology and sociology. More recently, it has been adopted in health and medical research. As described below, it has been adopted widely within research involving socially excluded individuals. Arguably, qualitative inquiry aligns with inclusive research that has become essential at present around the globe. Most qualitative methods promote the inclusion of research participants; often, as an active partner in the research process. This chapter discusses the value of qualitative research in social inclusion, inclusive qualitative research methods which include arts-based, visual research, embodiment, and digital-based qualitative research as well as the role of qualitative researchers and social inclusion.

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Qualitative Research and Social Inclusion

Qualitative inquiry focuses on the social world. A qualitative research approach, as Hesse-Biber (2017, p. 4) suggests, offers “a unique grounding position” for researchers to undertake research that encourages distinct ways of asking questions

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and offers an insight into the social world, which in turn will help researchers to make sense of a social issue that “privileges subjective and multiple understandings.” Qualitative research offers explanations for social actions (Rossman and Rallis 2017). In the social world, we deal with the subjective experiences of individuals. In different social situations and over time, people’s “understanding of reality” can change (Dew 2007, p. 434). To capture and understand the perspectives of individuals, qualitative inquiry relies heavily on words or stories that these individuals tell researchers (Patton 2015; Creswell and Poth 2018; Liamputtong 2020). Thus, qualitative research has also been recognized as “the word science” (Liamputtong 2020). Qualitative inquiry possesses distinctive characteristics (Rossman and Rallis 2017; Creswell and Poth 2018). These are presented in Table 1. Qualitative research is utilized when “silenced voices” need to be heard. Qualitative inquiry permits researchers to ask questions and to find answers, that can be difficult or impossible with the quantitative approach (Hesse-Biber 2017; Liamputtong 2020). For example: What strategies do Asian people adopt to deal with discrimination resulting from COVID-19? How do young refugee people deal with social exclusion? How do women experiencing sexual violence deal with their situations in their everyday life? and What contributes to stigma and discrimination of HIV/AIDS despite extensive media and educational campaigns in the country? These are some examples of what qualitative research can find answers for health and social care policy-makers and professionals. When this chapter was written in 2020, people around the world had been hit hard by the COVID-19 pandemic. This is an example of where qualitative inquiry can play a vital role in understanding people’s lived experiences of the virus, and the impact it has had on their lives. As Teti et al. (2020, p. 3) argues, qualitative research is situated to “explore the plurality of expertise and diversity of perspectives necessary to understand fully the COVID-19 pandemic as it unfolds.” Qualitative research can provide in-depth understanding of the situation as it unravels, and what we can learn from it for future outbreaks, as well as strategies that can be used to effectively manage the situations.

Table 1 Common characteristics of the qualitative inquiry Qualitative inquiry: Common characteristics • It is fundamentally interpretive • It focuses on the meanings and interpretation of the participants • It asks why, how, and under what circumstance things arise • It explicitly attends to the contextual situations of the participants • It takes place in the natural settings of human life • It emphasizes holistic accounts and multiple realities • It is emergent rather than rigidly predetermined • Participants are treated as an active respondents rather than as subject • It makes use of multiple methods • The researcher is the means through which the research is undertaken

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Qualitative research is crucial for research involving socially excluded people including marginalized, vulnerable, or hard-to-reach individuals and communities around the globe (Liamputtong 2007, 2010, 2020; Flick 2018). This is particularly so when they are “too small to become visible” in quantitative research (Flick 2018, p. 452). Often, they are excluded from the research and policy-making process. More importantly, due to their marginalized, vulnerable status, and distrust in research, most of these individuals tend to decline to participate in research. The nature of qualitative inquiry will permit qualitative researchers to be able to engage with these individuals. Having opportunities in participating in research, their voices can be better heard. This may assist these individuals to be more socially inclusive in society.

3

Qualitative Inquiry and the Inclusive Research Approach

The inclusive research approach has become increasingly popular in the last few decades. This chapter encourages more inclusive means that researchers can adopt to include the experiential knowledge of research participants (as well as of their own). Within the often-exclusive world in which we are now living, there are many situations where conventional methods may not work and can even be alienating for some people. It is crucial that researchers adopt unconventional alternative approaches to meet the needs of people who may not fit the white privileged norm. Indeed, many researchers have increasingly realized the value of more inclusive inquiries in working with socially excluded groups. Research that involves children, for example, traditional research methods such as in-depth interviews or focus groups may be problematic. Inclusive research methods that treat children as active research participants instead of research objects will allow children to contribute valuable knowledge in the research. These inclusive methods also allow researchers to gain a deeper insight into the understanding and experiences of children (Angell and Angell 2013). Increasingly too, there have been many researchers who believe in the value of social justice and attempt to change the social conditions of people and communities who are socially excluded (Bryant 2016; Denzin 2017). This is precisely what Denzin (2010) has encouraged researchers who are situated within the “moral and methodological community” to do. This has resulted in the development of more inclusive approaches in many parts of the globe. These approaches are also in expansion. Theoretically, to reduce social exclusion in research, the inclusive research approach needs to be embraced (Williams et al. 2015). Inclusive research is an approach that embodies participatory and emancipatory wisdom where research participants are at the center of the research; they are actively engaged in the planning and conduct of the research with which they are involved (Walmsley and Johnson 2003; Nind 2014b, 2017; Edwards and Brannelly 2017; Fullana et al. 2017; Veck and Hall 2020). Johnson et al. (2014, p. 77) suggest that inclusive research epitomizes “a movement from a research model in which people were ‘subject’ to research to one in which they are accorded respect, are seen as experts in their own

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lives and can be agents for change.” To them, inclusive research bridges emancipatory research to the method. Inclusive research emphasizes the sharing of power between the researchers and research participants who are often referred to as “coresearchers” (Walmsley and Johnson 2003; see also Salmon et al. 2018; Walmsley et al. 2018). Inclusive research seeks to reduce the inequality of power that shapes traditional research processes and to widen the role of research participants (Novek and Wilkinson 2019). Importantly, inclusive research reflects a change concerning “the democratization of the research process” (Nind 2014a, b, p. 1, 2017, p. 279), which has become prominent in the qualitative inquiry. The democratization of research attempts to do justice for individuals and groups who experience ongoing exclusion and marginalization. They are communities that need extra research strategies so that their oftensilenced voices can be heard (Edwards and Brannelly 2017; Alminde and Warming 2020). This research practice intends to ensure that socially excluded individuals/ groups are involved in research, and how they can gain benefit from their involvement (Edwards and Brannelly 2017; Alminde and Warming 2020). Nind (2017, p. 280) sees inclusive research as tactical and “morally-committed” strategies that would ensure that research participants taking part in the research “are not passive providers or consumers of research knowledge but critically engaged in generating it.” Inclusive research, according to Edwards and Brannelly (2017, p. 272), attempts to ensure that the “research is of concern and benefit to the research participants, reaches and represents their grounded knowledge, and treats them with respect.” Importantly, inclusive research “can be used. . . to promote and support change” in society (Johnson et al. 2014, p. 83). Put simply, inclusive research situates socially excluded people at the center of research processes (Walmsley 2001; Walmsley and Johnson 2003; Nind 2017). It provokes power relationships between researchers and researched and renegotiate them so that the hierarchy between the two can be reduced or eradicated (Nind 2014b; Nind et al. 2017; Veck and Hall 2020). Methodologically, the inclusive research approach shares a typical terrain with the qualitative inquiry, particularly the concern relating to the lived experience and voices of research participants (Nind and Vinha 2014; Nind 2017; Clendon and Munns 2018; Novek and Wilkinson 2019). According to Novek and Wilkinson (2019: 1056), participating in qualitative research can “contribute to the well-being and social inclusion” of the research participants. The fundamental aspect of inclusive research is the responsibility of researchers to “listen” carefully to other people (Veck and Hall 2020). Inclusive research, similar to the aim of the qualitative inquiry, aims to meaningfully hear the voices of individuals who are socially excluded in society. This is seen in the argument of Fullana, Pallisera, and Vilà (2017, p. 724), who suggest that inclusive research can be achieved when researchers endeavor to listen and understand, as well as recognize that “people are free to express their point of view with their own voice.” This is what qualitative researchers do. Often, qualitative researchers work closely with individuals and they listen tentatively to what they say and try to make sense of what the participants tell them.

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There are several inclusive research approaches that we have witnessed recently. These are discussed in the following sections.

3.1

Participatory Research

Participatory research (PR) refers to a distinctive tenet of social research that is often linked with social transformation among socially excluded individuals and marginalized societies (Kemms et al. 2014; Higginbottom and Liamputtong 2015; Abma et al. 2019; Eckhoff 2019). The roots of PR are “in liberation theology and neo-Marxist approaches to community development and liberal origins in human rights activism” (Kemmis and McTaggart 2000, p. 568). In principle, PR aims to examine the political structures that disempower marginalized, deprived, and oppressed groups of people and to find ways in which these structures can be changed (Brydon-Miller et al. 2011; Lykes and Crosby 2014; Higginbottom and Liamputtong 2015; Bradbury-Jones et al. 2018; Abma et al. 2019). Thus, PR aims to create new forms of knowledge through a creative synthesis of the different understandings and experiences of people who take part. Since this knowledge is created from the point of view of marginalized, deprived, and oppressed groups, it aims to transform “social realities” (de Koning and Martin 1996, p. 14). Martin (1996, p. 82) argues that PR is based on a “strong commitment to social justice and a vision of a better world.” The distinctive nature of PR lies in “its focus on collaboration, political engagement, and an explicit commitment to social justice” (Brydon-Miller et al. 2011). In the PR tradition, the knowledge and lived experience of “oppressed” people are valued. PR researchers must have a genuine commitment toward “oppressed” people. The researchers must authentically work in collaboration with the community of interest in order to improve their lives (Bradbury-Jones et al. 2018; Abma et al. 2019). In practice, the key concepts and activities of PR are interrelated and include participation, education, and collective action (Reason and Bradbury 2008; Brydon-Miller et al. 2011; Kemms et al. 2014; Bradbury 2015; Abma et al. 2019). PR aims to be a learning experience for the participants. Its focus is their interests (Bradbury-Jones et al. 2018; Eckhoff 2019). Establishing the directions of the research requires active and informed participation by the community. Thus, community groups are seen as “active subjects” of the research as opposed to “passive objects having research done on them,” as they are often considered in orthodox research methods. They take an active role from the beginning of the project and, through this active participation, they gain new knowledge and skills, and hence increased self-confidence (Higginbottom and Liamputtong 2015; Bradbury-Jones et al. 2018). This process is believed to empower the local community and assist them to change their lived situation (Reason and Bradbury 2008; Brydon-Miller et al. 2011; Lykes and Crosby 2014; Higginbottom and Liamputtong 2015; Bradbury-Jones et al. 2018; Abma et al. 2019). Cornwall (1996, p. 94) takes a similar standpoint, arguing that PR has its focus on the process of research, not the product. Cornwall

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argues that actively engaging in a process of learning helps the local people to realize what they know, and that their knowledge is valuable. This in turn empowers them to be able to take control of their situations more effectively. PR represents an approach to the learning process in which research, reflection, and action are continuing. Both the local people and the researcher play equal parts and the local people are involved in the process from the start (Reason and Bradbury 2008; Brydon-Miller et al. 2011; Kemms et al. 2014; Lykes and Crosby 2014; Bradbury 2015; Abma et al. 2019). PR is an approach in which the “oppressed” and ordinary people join hands to take collective action for social change (Maguire 2006). As such, PR aims to “transform power structures and relationships and empower oppressed people” (George 1996, p. 119). PR helps to legitimize “the right to research” among socially excluded people (Abma et al. 2019; Eckhoff 2019). It allows these individuals to acquire new knowledge and skills through their participation in research, thereby empowering them and enabling them to have more control of their life. It prevents “oppressed” people from becoming passive objects who have research “done on them,” as in conventional research methods, because they are able to have equal power in controlling the research. Through this empowerment and emancipation, injustices in health and social care can be reduced or, at best, eradicated. Participatory research, according to Bradbury-Jones et al. (2018), has become a prominent approach for researchers conducting research with marginalized children who are particularly vulnerable. These include children who have experienced neglect or abuse, children with disabilities, and children who identify as Lesbian, Gay, Bisexual, Transgender, or Queer (LGBTQ) (see also Eckhoff 2019). As the project is co-developed with children, participatory research is creative and flexible; thus, it facilitates “the meaningful inclusion of children with complex or additional social and communication needs” (p. 81). Bradbury-Jones et al. (2018, p. 81) contend that: For children whose needs are complex or uncommon and who may have had difficult or damaging relationships with adults participatory approaches go some way to valuing and making visible their unique experiences and insights.

3.2

Visual Methods

In the last few decades, researchers have embraced the use of visual research so that their understanding of the human condition can be enhanced. Visual research methods refer to “a series of research approaches in which visualizations are developed, analyzed, and/or disseminated to examine a specific phenomenon” (Shannon-Baker and Edwards 2018, p. 937). Visual methods are classified into four groups: pre-existing visuals that are selected for inclusion into a research project, visuals that are generated as data, visuals that are constructed as an approach for data analysis, and visuals produced as a way for the dissemination of research findings. There are a wide variety of visual forms that are available to researchers. Each of these visual forms can result in different ways of knowing. Thus far, we have witnessed visual forms such as photographs, cartoons, graffiti, maps, diagrams,

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films, video, signs, and symbols have been adopted in the research. Most often, however, researchers use visual methods together with some form of interviewing (Shannon-Baker and Edwards 2018; Liamputtong 2020). Images speak louder than words (Harper 2002, 2012) and there is a saying that “a picture is worth a thousand words.” A picture can be captured instantly at a glance, but those thousand words would need time to read or to listen to. The use of visual images as data collection tools in research can assist researchers in many ways. Images can assist us to capture knowledge that is hidden, elusive, or hard-to-putinto-words which would be ignored or remain hidden without the use of visual forms. Photographs, for example, can greatly invoke affect, reflection, and information (Rose 2016) that written texts may not be able to do. Similarly, drawing and painting can grasp emotions that are not easily produced in words alone. Images can assist researchers to pay attention to things in different ways. Ordinary things can become extraordinary with the use of images. This can make us embrace new ways of doing things. Often, images can invoke new research questions and inspire the research design (Rose 2016; Lyon 2020; Mazzetti 2020; Milne and Muir 2020). Teti and colleagues (2020) suggest that in health research and practice, visual methods are common tools. Health researchers have appreciated the values of photography as a means “to understand health issues from the perspectives of those living with health challenges, inform health interventions, and engage community members in identifying and solving health problems” (p. 1148). Teti and colleagues discuss the application of the photovoice method to HIV/AIDS and Autism Spectrum Disorder research and practice. Within community-based participatory action research, the method of photovoice has emerged as an innovative means of working with marginalized people, particularly in cross-cultural research (Liamputtong 2007, 2010, 2020). The photovoice method allows individuals to record and reflect the concerns and needs of their community via taking photographs. It also promotes critical discussion about important issues through the dialogue about photographs they have taken. Their concerns may reach policymakers through public forums and the display of their photographs. By using a camera to record their concerns and needs, it permits individuals who rarely have contact with those who make decisions over their lives, to make their voices heard. In their research regarding sexual violence among trans women of color in Australia, Ussher et al. (2020) used the photovoice method as a means for the women to reflect on their everyday experiences of sexual violence. Through their photos, trans women of color in this study portrayed their frequent experiences of sexual harassment in their daily lives; often these were manifested by verbal abuse and hostile public staring. They experienced racism in combination with sexism, homophobia, and transphobia, taking pictures of places where these occurred. This revealed the intersection of gender, sexuality, and cultural identity in trans women’s experiences of verbal harassment. Verbal abuse and staring worked as the precursor to physical sexual assault, such as groping and forced sexual acts, perpetrated by strangers, sex work clients, and their intimate partners. Sexual assault was seen by trans women as a reflection of the fetishization of their gender identity and gender expression, that served to legitimate objectification and sexual assault. These

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messages were conveyed with provocative and metaphorical images of dolls and eggplants, with rich descriptions of what these images meant in relation to their experiences. Many trans women reported poor health outcomes. They saw these outcomes closely linked with their exposure to sexual violence and the transphobia they are subjected to and social inequities. The rich findings of this study reaffirm the strength of the photovoice method as inclusive research that gives voice to a group of socially excluded and vulnerable women as well as cultivates empowerment among the trans women of color in the study.

3.3

Arts-Based and Arts-Informed Research Methods

Visual research approaches are parallel to arts-based and arts-informed research. A core feature of arts-based research is the use of artistic methods. For arts-informed research, it makes uses for artistic methods for elaborating on other qualitative methods; most often it is the individual interviewing method (Shannon-Baker and Edwards 2018; Liamputtong 2020). Arts-based research is an emergent, appealing, and expanding terrain (Barone and Eisner 2012; Leavy 2015; Capous-Desyllas and Morgaine 2018; Segalo 2018; Edwards 2019; Lenette 2019; Ward and Shortt 2020). According to Lenette (2019, p. 27), arts-based research “encompasses a range of different methods of inquiry for interpretation, meaning-making, and representation of lived experiences.” Artsbased research approach embraces “the use of any art form, at any point in the research process, to generate, interpret, or communicate new knowledge.” In her recent writing, Edwards (2019, p. 1132) coins arts-based research as “a way of using the arts to facilitate and enhance processes within research, to advance knowledge.” Arts-based research embraces creative works such as poetry, embroideries, plays, drawing, painting, song writing, dance, and narrative fiction (also Liamputtong and Rumbold 2008; Leavy 2015; Capous-Desyllas and Morgaine 2018; Segalo 2018; Edwards 2019; Lenette 2019; Ward and Shortt 2020). Arts-based research became to be known between the 1970s and the 1990s, and has now been extensively embraced in inclusive research (Edwards 2019). Artsbased research is based on the assumptions of “the creative arts” in research. According to Chilton and Leavy (2014, p. 403), “the partnership between artistic forms of expression and the scientific process integrates science and art to create new synergies and launch fresh perspectives.” Arts-based research possesses “the power to provoke, to inspire, to spark the emotions, to awaken visions and imagining, and to transport others to new worlds” (Thomas 2001, p. 274). The arts can assist researchers as they attempt to “portray lives” and light up “untold stories” (Cole and Knowles 2008, p. 211; Chilton and Leavy 2014, p. 403). Through the arts, we can reach people’s “inner life” through their “stories, metaphors, and symbols, which are recognised as both real and valuable” (Chilton and Leavy 2014, p. 403). Segalo (2018, p. 298) too writes that by “creating multiple forms of engaging with data” (such as poetry, picture, drama, and mapping) give researchers “space to be in conversation” with individuals from

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different “vantage points.” This of course allows the voices and stories of people who are, otherwise, silent in research to be included more (Segalo 2016). The arts-based and arts-informed inquiry is situated within a tradition of participatory research (PR) (Higginbottom and Liamputtong 2015; Capous-Desyllas and Morgaine 2018; Finley 2018; Lenette 2019; Matarasso 2019; Ward and Shortt 2020). Researchers adopting this line of inquiry call for a “reinterpretation of the methods” as well as its ethics concerning human social research (Finley 2005, p. 682, 2018). They attempt to develop inquiry involving action-oriented processes that provide benefits to the local community where the research is undertaken. Artsbased and arts-informed research, Finley (2005, p. 686) maintains, is carried out to “advance human understanding.” Primarily, arts-based and arts-informed researchers attempt to “make the best use of their hybrid, boundary-crossing approaches to the inquiry to bring about culturally situated, political aesthetics that are responsive to social dilemmas.”

3.4

Embodiment Research

Corporeal realities, or embodiment, has become a site of attention among feminist and postmodern researchers (Perry and Medina 2011, 2015; Lennon 2014; Ellingson 2017). This has resulted in the advancement of research methods that can be used to elicit the knowledge of the corporeality (the body) within the social sciences (HesseBiber and Leavy 2006; Gray and Kontos 2015; Ellingson 2017). The body, according to Perry and Medina (2011, p. 63), is “our method, our subject, our means of making meaning, representing, and performing.” The embodiment is embraced by Grosz (1994) as the “lived” or “inscribed” body. The lived body symbolizes experiential knowledge that is connected with the physicality of an individual (Hesse-Biber and Leavy 2006; Tarr and Thomas 2011; Ellingson 2017). It is through the lived body that meanings are brought about (Grosz 1994; Liamputtong and Rumbold 2008; Tarr and Thomas 2011; Lennon 2014; Perry and Medina 2015; Ellingson 2017; Vacchelli 2018). As a researcher, we can attain crucial knowledge by the lived body of the research participants. At the same time, we can also access this important knowledge through our own body (Hesse-Biber and Leavy 2006; Lennon 2014; Ellingson 2017; Naidu 2018; Vacchelli 2018). Thus, the embodiment is “an integral part of all research processes” (Ellingson 2017, p. 1). In their conversation about how to obtain knowledge about the identities of individuals, Gaunlett and Holzwarth (2006, p.8) contend that “we need research which is able to get a full sense of how people think about their own lives and identities, and what influences them and what tools they use in that thinking, because those things are the building blocks of social change.” This has prompted many embodiment researchers to invent methods that can allow them to do so. The body mapping method, as Coetzee et al. (2019) suggest, is a “research tool that prioritizes the body as a way of exploring knowledge and understanding experience.” Body mapping is a creative method that really grabs the imagination of research participants (Orchard et al. 2014; de Jager et al. 2016; Ebersöhn et al. 2016; Naidu 2018). In the body mapping method, life-size body drawings are drawn

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(or painted) to visually portray “aspects of people’s lives, their bodies and the world they inhabit.” The method has also been coined by researchers as “body map storytelling” because the meaning of a body map can only be fully understood by the story and experience as told by the individual who creates the body map. Inclusive research methods that incorporate a bodily experience also include walking and talking together with the research participants, referring to as the walking interviewing method (Block et al. 2019; King and Wroodroffe 2019; Boydell et al. 2020). According to King and Wroodroffe (2019, p. 1277), “as a shared corporeal or bodily experience, the physical act of walking alongside someone shapes the research encounter, aiding the development of an intersubjective understanding of the physiological particularities of a respondent’s lifeworld.” Walking interviews are “a valuable means of deepening understandings of lived experiences in particular places” (p. 1270). Walking interviews generate “rich, detailed and multi-sensory data” (p. 1270). Walking interviews provide researchers with “unique opportunities” to examine the contexts of research, and to provide “insight into environmental and locational influences that can impact significantly on how individuals perceive, experience, and exercise agency over their wellbeing, health, and care” (p. 1274). Voice, according to Hesse-Biber and Leavy (2006, p. xxv), is also a part of the corporeal realities because voice occurs “in a cultural context, in relation to self, and in relation to others.” Voice is hinged on a mutual form of expectation. Voice, when it is expressed in certain ways, such as the digital storytelling method, allows individual’s stories to be heard. In their research with young people in Canada, Gladstone and Stasiulis (2019) discuss the digital storytelling method that they employed. Digital stories refer to “short (2–3 min) videos using first-person voice-over narration synthesized with visual images created in situ or sourced from the storyteller’s personal archive” (p. 1303). The method permits the first-person narrative; the participants have an opportunity to write and use their own voice to tell their own story. This is indeed where the power of the method lies. The method is situated within the emergence of the arts-based research approach and is adopted widely in community-based participatory research, public health, and health promotion research and practice (see Otañez and Guerrero 2015; Ellingson 2017; Lenette 2019; Flicker and MacEntee 2020).

3.5

Digital Methods

Digital methods refer to the application of online and digital communications that researchers utilize to gather and analyze research data (Brondani and Marino 2019; Hookway and Snee 2019; Pearce et al. 2019; Wright 2019). Globally, the digital has become a significant part of our daily life and researchers have embraced it as part of their research methods (Iacono et al. 2016; Brondani and Marino 2019; Hookway and Snee 2019; Pearce et al. 2019; Wright 2019). We have witnessed many research projects that make use of digital methods in recent times. Digital methods have many advantages over more conventional research methods. Digital communication can reach a large number of people across different geographical and socio-cultural boundaries (Iacono et al. 2016; Brondani and Marino 2019; Hookway and Snee 2019; Pearce et al. 2019; Wright 2019). Mann

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and Stewart (2000, p. 80) suggest that “the global range of the Internet opens up the possibilities of studying projects which might have seemed impracticable before.” Researchers are able to conduct their research with individuals from different local and global locations. Importantly, digital methods provide possibilities to reach a terrain of socially excluded individuals, such as people with disabilities, mothers at home with small children, older people, and people from socially marginalized groups such as gays and lesbians, who may not be easily accessed in face-to-face research methods (Mann and Stewart 2000; Brondani and Marino 2019; Hookway and Snee 2019; Pearce et al. 2019; Wright 2019). These socially excluded individuals can make contact with others from their familiar and physically safe locations. People with disabilities who have access to email and necessary online information can take part in research without having to leave home or be mobile. Digital methods also permit researchers a possible vehicle for connecting with people situated within restricted access like schools, hospitals, cult, and religious groups, bikers, gangs, and so on. In social science areas, digital methods provide the possibility of researching within politically sensitive or dangerous areas (Mann and Stewart 2000). Due to the anonymity and physical distance, both the researchers and the participants are protected. Some highly sensitive and vulnerable participants, such as political and religious dissidents or human rights activists, will be more likely to participate in online research without excessive risk. Researchers can access censored and politically sensitive information without being physically in the field. People living or working in war zones, or sites of criminal activity, or places where diseases abound can be accessed without needing to combat the danger involved in actually visiting the area. Digital methods also permit researchers to distance themselves physically from research sites. This helps to eliminate the likelihood of suspicion that might alienate some participants. As the boundary between the virtual (or online) and face-to-face communication interactions blur, identity formation is more influenced by and takes place in online spaces. This online space is more prominent for socially excluded individuals who may not be able to express and develop their identities in public or at home. Trans people use online support groups to form friendships and connections with other transgender individuals (Evans et al. 2017; Noack-Lundberg et al. 2020). Because transgender people are a minority and only make up a small percentage of the population, many people may have had limited contact with transgender communities, due to stigma, isolation, or anxiety, and because transgender people are a minority and only make up a small percentage of the population (Noack-Lundberg et al. 2020). In their recent paper, Liamputtong (2020) discuss the way that trans women embody their transgender identity, focusing on identity questioning, gender dysphoria, and clinical gatekeeping and medicalization narratives. Their data was derived from online forums where trans women posted content about their gender perspectives and experiences of gender and gender transitioning. Trans women participating in online forums in this study faced many challenges in being a transgender person. In embodying their transgender identity, many interacted with significant others in society as well as health care providers. Liamputtong (2020) argue that it is essential that we understand the ways trans women express their gender identity. Data from online forums revealed that trans women have

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heterogeneous experiences that often do not match those of expected discourses (and diagnoses) which have implications for access to treatments to achieve their desired gender identity. Trans individuals have the right to carry out self-determination practice as a way to achieve their gender autonomy. Health care providers must understand the way trans women embody their identity as one of the myriad diverse human expressions of one’s own gender.

4

Qualitative Researcher as an Inclusive Researcher Researchers, in other words, are not simply dispassionate observers of social phenomena; they can play an active role in the construction and maintenance of categories and concep tions of the included and the excluded. (Veck and Hall 2020, p. 1091)

Qualitative researchers look for meanings that people have constructed (Hesse-Biber 2017). They are interested in learning about “how people make sense of their world and the experiences they have in the world” (Merriam and Tisdell 2016, p. 15). Qualitative researchers can be perceived as “constructivists” who “seek answers to their questions in the real world” (Rossman and Rallis 2017, p. 4) and then “interpret what they see, hear, and read in the worlds around them” (p. 5). They attempt to bring out the silent voices of those who are socially excluded in society. They are indeed an inclusive researcher. To bring out the silent voices of research participants, qualitative researchers are committed to several issues, as presented in Fig. 1. Importantly, qualitative research is sensitive to personal biography as the researcher acts as “the instrument of inquiry” (Patton 2015, p. 3; Rossman and Rallis

Interact extensively with the participants

Employ multiple reasoning

Have a strong commitment to examining an issue from the participant’s perspective

See the social world holistically

Are sensitive to personal biography

Qualitative Researchers & Commitments

Fig. 1 Commitments of qualitative researchers

Are reflexive in the conduct and interpretation of research

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2017, p. 9). For most qualitative researchers, what makes them conduct their research is an important component of their research journeys. Qualitative researchers tend to acknowledge who they are and how their personal biography frame their research across the research process, from establishing research questions, selecting research methods, analyzing the data, and writing up. They value their “unique perspective as a source of understanding rather than something to be cleansed from the study” (Rossman and Rallis 2017, p. 9). Thus, reflexivity forms the importance of being a qualitative researcher (Liamputtong 2020).

5

Conclusion and Future Directions

Qualitative research has become a well-established and important mode of inquiry in many fields. This chapter has suggested that the inquiry can contribute significantly to research that promotes social inclusion in people. Most importantly, we are now living in a vulnerable world, where we have, and continue to be, confronted with social inequalities and injustices in all corners of the globe (Liamputtong 2007, 2019). Qualitative research that can help us to find better answers that better suit people, particularly those who are marginalized and vulnerable is needed (Flick 2018). Qualitative inquiry can lead to a positive change in the life of many people. This is what Denzin (2017) has advocated. Denzin (2017, p. 8) puts this clearly when he calls for qualitative research that “matters in the lives of those who daily experience social injustice.” Qualitative research will continue to play a crucial role in the years to come. The year 2020, when this chapter was written, is referred to as the year of COVID-19 that has impacted the life of millions of people around the globe. This is the time that the qualitative inquiry is so valuable. Indeed, Teti et al. (2020, p. 1) say this clearly: COVID 19 is not just a medical pandemic; it is a social event that is disrupting our social order. . . Qualitative inquiries are our best method for capturing social responses to this pandemic. As has been shown with other epidemics and health, these methods allow us to capture and understand how people make meaning and sense of health and illness.

This chapter has presented readers with a number of inclusive research methods that researchers have used in their research. As an inclusive qualitative researcher, our choice of inclusive methods primarily depends on the questions we pose; the people who are involved; our moral, ethical, and methodological competence as researchers; and the socio-cultural environment of the research. As we are living in the world that continues to change, it is likely that researchers will continue to experiment with their inclusive and creative methods in order to ensure the success of their research. It is anticipated that in the future, we will see even more inclusive qualitative methods that researchers will bring forth. It, indeed, will be an exciting time for inclusive researchers.

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Socially Inclusive Foundations of Statistics An Autoethnography

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Motivations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Socially Inclusive Research and Worldview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Bayesian Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 What Is Bayesian Methodology? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Argumentation and Community Elicitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Bayesian Individualism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Traditional Mistrust of Background Knowledge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Realigning Statistical Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Objectivity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Confirmation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Universalism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Epistemological Grounding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 The Meaning of Probability in Community Elicitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Evaluating Community Elicitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Though distinct, the practice of statistics and the scientific worldview in which it is almost always practiced are so entwined that they are often taken to be the same. Feminist and decolonization scholars, among others, have noted that the scientific worldview is control-centered, irresponsible, and socially exclusionary. This chapter, written as an autoethnography, documents the author’s efforts as a statistician in creating a new alliance of statistical practice with an alternative, socially inclusive worldview. Aided by the concept of community elicitation, the author argues that Bayesian data-analysis methods hold promise for interfacing D. J. Spitzner (*) Department of Statistics, University of Virginia, Charlottesville, VA, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_17

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with socially inclusive research approaches that include a quantitative component, such as mixed methods research. Keywords

Social inclusion · Inclusive research · Mixed methods research · Bayesian methods · Community elicitation · Probability

1

Introduction

Robin Wall Kimmerer (2013, pp. 345–346), who identifies herself as a mother, scientist, decorated professor, and member of the Citizen Potawatomi Nation, frames science as a process of revelation through rational inquiry. She makes a crucial distinction between scientific practice and the scientific worldview: On scientific practice, she writes, “the practice of doing real science brings the questioner into an unparalleled intimacy with nature,” and suggests many scientists find the pursuit to be humbling and deeply spiritual. Kimmerer contrasts this with the scientific worldview, writing that it involves a cultural interpretation of science and technology to reinforce “reductionist, materialist economic and political agendas.” She furthermore refers to the scientific worldview as an “illusion of dominance and control, the separation of knowledge from responsibility.” Once making the distinction between practice and worldview, Kimmerer puts forward her dream of a new alliance, “of a world guided by a lens of stories rooted in the revelations of science and framed with an indigenous worldview – stories in which matter and spirit are both given voice.” These distinctions map well to the author’s own experience of practicing his discipline within a problematic, dominant worldview. His practice is that of a statistician, a practice that he defines as making meaning out of numerical data. Its subject, abstract and mathematical, does not cultivate the sort of intimacy of which Kimmerer writes; nevertheless, statistical practice can activate a fascination with the creation of its idiosyncratic conceptual pictures, and a curiosity about what it is capable of describing. His discipline is furthermore steeped in a philosophical stance that draws heavily from logical-empiricist, positivist, and post-positivist perspectives. That is the dominant stance that surrounds current-day statistical practice, and that stance is deeply couched within the same scientific worldview that Kimmerer describes, accurately, in the author’s view, as ultimately control-centered, irresponsible, and, he would add, socially exclusionary. This chapter documents a portion of the author’s journey to reconcile these distinctions within his discipline, and, in particular, to dream in his own way of a new alliance.

1.1

Motivations

The author has chosen to write this chapter as an autoethnographic account (see Ellingson and Ellis 2008, for guiding practices of this method) primarily because he wishes to avoid any perceived mantle situating him as representative to his

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discipline, but also to tell the story of him thinking optimistically through ideas that are contrary to his formal training. To his knowledge, there is no movement, nascent or otherwise, within statistics to shake off the scientific worldview, and to find another one. Accordingly, his journey has been a solitary one, at least within his discipline. On the other hand, he draws substantial motivation from outside of statistics. He is particularly motivated by the sustained and increasing activity within mixed methods research, an approach to research that applies qualitative and quantitative methods in dialogue with each other. Meixner and Hathcoat (2018, p. 3) write of historical and current-day debates within mixed methods research around the “philosophical legitimacy of mixing qualitative and quantitative data,” and furthermore illustrate a practical imperative to reconcile philosophical incongruency without resorting to a substance-free version of pragmatism. In addition, Meixner and Spitzner (▶ Chap. 20, “Mixed Methods Research and Social Inclusion”) situate mixed methods research as “inquiry that advances the process and aims of both inclusive research and social inclusion.” When viewed in this context, a contribution made by this chapter is its identification of a data-analysis methodology that holds promise for resolving tensions between qualitative and quantitative stances, and for use in assembling a framework for mixed methods research. Through its use in mixed methods research, the author put this methodology forward as potentially suitable for the promotion of inclusive research. Specifically, the author holds up Bayesian data-analysis methods for this purpose. The advantage of these methods is due to their being equipped for incorporating background knowledge into quantitative analysis. To clarify this capability, in Sect. 2.1, below, he offers a minimally technical demonstration of the Bayesian approach, which is sufficient for illustrating its core aspects. Subsequent discussion offers a reimagining of Bayesian epistemological foundations that decenters the scientific worldview, and builds a new center around a conception of knowledge that is based in community. As for the author’s situation, he is a white, cis-gendered, heterosexual male, who spent all of his childhood in a rural town in the northeast United States. He and his partner raise a blended family of four children, one of whom has Down’s syndrome, a topic that he will touch on later in this chapter. As an undergraduate student, he studied mathematics and statistics at a public university, while participating in arts-related extracurricular activities. He has maintained interests in both the technical and creative, but has at times felt it straining to have his feet in two distinct cultural streams; he has long sought to achieve some genuine degree of integration. The author’s time studying at a high-ranking mathematical statistics doctoral program left him inspired by the mathematical depth of probability theory, and curious to understand why theories of statistical inference do not achieve similar depth. Later, as a young faculty academic, he became involved, and still is, in the community of Bayesian statisticians, having been attracted by that community’s stewardship of statistical theory and principled development of statistical methodology. In time, as this chapter explains, it became clear to him that the answers to many of his questions regarding statistical theory have to do with the influence

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of the scientific worldview. To the extent that he was able, his attention moved away from applications in the hard sciences and engineering, toward those in the social sciences, but he continues to be dismayed by the utter dominance of positivist-type thinking in quantitative research. In this chapter, he shares his wonderings on how quantitative methodology could potentially be informed by the perspectives of a socially inclusive worldview, and his hope to foster interactions with those who would envision a place for quantitative methodology within such perspectives.

1.2

Socially Inclusive Research and Worldview

Socially inclusive research and its associated worldview can refer to a variety of concepts, themes, and objectives. Nind (2014, p. 1) describes inclusive research as encompassing a range of research approaches, including “participatory, emancipatory, partnership and user-led research,” among others. Koikkalainen (2011, p. 2) offers that the term “social inclusion” may refer synonymously to such notions as “unity, cohesion, civic engagement, togetherness, or bridging the gap between ‘us’ and ‘the other’,” or it can refer to focused actions that are designed to foster social integration of disadvantaged groups. Cappo and Verity (2014, p. 27) are guided by social-inclusion concepts in devising policy changes in South Australia, which aim to remove barriers to “secure housing, learning and employment, health and other services, social support and connections” that prevent people and communities from “living out their active citizenship.” Thus, a socially inclusive worldview involves a wide-ranging set of guiding concepts, as well as goals that would potentially be achieved through public policy (see also the “Introduction” to this volume). A prominent theme in social inclusion is the importance of community. Several authors are explicit on this point. Tua and Banerjee (2019, p. 109) succinctly define social inclusion as “the level of community participation and interpersonal relationships that people experience, as individuals and as groups.” Simplican, Leader, Kosciulek, and Leahy (2015, p. 18) build these ideas into an ecological model for social inclusion, defining social inclusion as “the interaction between two major life domains: interpersonal relationships and community participation.” A socially inclusive worldview may also be understood by what it stands against. Allman (2013, p. 1) defines social inclusion in terms of contrasts, indicating that it is to “consider facets of social equality and inequality, social integration and stratification, social mobility as it relates to social inclusion and exclusion, and the functional contribution of the periphery relative to the social core.” His work also highlights sociological mechanisms of exclusion, including exclusion hierarchies, ostracism, and stigmatism. Koikkalainen (2011) reinforces this confrontational thread running through ideas around social inclusion, commenting that early use of the term was in opposition to approaches to research that demonstrate social exclusion. The themes of community, opposition to social exclusion, and other guiding concepts of social inclusion are prominent within the realignment of statistical

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practice that the author offers below, and crucial to distinguish it from traditional modes. In Sect. 2, the author casts Bayesian methodology as a community endeavor by situating it within Mercier and Sperber’s (2011, p. 60) “argumentative” theory of reasoning, which posits that “reasoning has evolved and persisted mainly because it makes human communication more effective and advantageous,” and furthermore strengthens the notion that even isolated individuals are woven into the fabric of community. This gives rise to a concept for describing the processes of inquiry that the author calls “community elicitation.” As will be discussed in Sect. 2.3, traditional Bayesian reasoning is individualistic, and contrasts with community elicitation by its consistency with what Mercier and Sperber describe as the “classical view” that the main function of reasoning is to “enhance individual cognition” (p. 59) and to correct the mistakes of intuition. In Sect. 3, the author lays out his precise vision for realignment. There, he examines major themes of the scientific worldview that are particularly relevant to statistical practice; along the way he discusses contemporary currents in statistics that suggest an acceleration of exclusionary practices. He explores these aspects through the twin lens of decolonization of knowledge and feminist epistemology of science, drawing most heavily on Haraway (1988), Harding (2008), and de Sousa Santos (2018). He subsequently dismisses these themes in favor of those of a socially inclusive worldview. Following this, in Sect. 4, he offers related perspectives on mathematical meaning and evaluating the processes of inquiry.

2

Bayesian Methodology

In this section the author aims to convey a basic sense of the Bayesian approach. Although statistical argumentation is necessarily mathematical, he keeps the technical level of this section as low as possible, requiring of the reader only familiarity with the concept of an incidence rate (e.g., of a disease) and an elementary understanding of histograms. The demonstrations he goes through, below, highlight elements of statistical practice that open channels to a socially inclusive worldview, which, moreover, contrast with elements of traditional Bayesian thinking. For conciseness, he focuses in this section on quantitative analysis; his intent, however, is for the demonstrations to represent one portion of a broader mixed methods research context.

2.1

What Is Bayesian Methodology?

As the author introduces Bayesian methodology, it is helpful to have a simple, uncontroversial example on hand for reference. The following simple scenario is one he offers to students in his introductory statistics classes: Example 1. Suppose a certain health disorder is known from vast amounts of historical data to be prevalent in 5% of the general population. A health assessment is

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Table 1 The three steps of the Bayesian approach STEP 1: assemble a “prior” distribution STEP 2: Develop a “data generating” distribution

STEP 3: Use Bayes’s theorem to calculate the “posterior” distribution

The prior distribution is a probabilistic description of what is known and what is uncertain about the phenomenon under study The data generating distribution is a probabilistic description of what is known and what is uncertain about how data are generated under plausible circumstances determined in STEP 1 The posterior distribution is a probabilistic description of what is known and what is uncertain about the phenomenon under study in the light of newly measured data

known to report incidences with 80% accuracy among patients where the disorder is present, and to report non-incidences with 90% accuracy among patients where the disorder is absent. Related terminology would characterize the assessment as having a “sensitivity” of 80%, a “false negative rate” of 20%, a “specificity” of 90%, and a “false positive rate” of 10%. Suppose the health assessment is applied to a generic patient, and it reports an incidence of the disorder. Subsequently, a mathematical result known as Bayes’s Theorem implies that there is a 30% probability the report is correct when taking the low prevalence of the disorder into account. With this example in mind, refer to the three core steps of a Bayesian approach laid out in Table 1. Translating to Example 1, the prior distribution is identified by the statement of 5% prevalence of the disorder in the general population. To be clear, the term “distribution” is probabilistic terminology referring to the weighting of probabilities across circumstances that are thought possible; so, for example, the prior distribution has 5% probability the disorder is present, and 95% that it is absent. It is common that a probability distribution would be displayed graphically as a histogram, as is done in the discussion around Example 2, below. The data in Example 1 are the conclusions of the health assessment (incidence or non-incidence), and the data generating distribution is identified by the statements of the assessment’s 80% sensitivity and 90% specificity. This probability distribution is of a special type that is defined “conditionally” on other information; so, in actuality, it defines separate versions of the distribution across all circumstances covered by the prior distribution: in the example, one version of the distribution is conditional on the presence of the disorder (80% incidence to 20% non-incidence), and the other is conditional on its absence (10% incidence to 90% non-incidence). The posterior distribution is sometimes said to represent an “update” of the prior, given new data; this interpretation reflects that Bayes’s Theorem conceptualizes the posterior distribution as a combination of the prior and data-generating distributions. As with the data-generating distribution, the posterior distribution is defined “conditionally” on other information, which, in this case, is the newly measured data. In Example 1, the stated posterior distribution (30% incidence to 60% non-incidence) is calculated given the condition of the health assessment’s report of an incidence; if the health assessment had reported a non-incidence, then a different posterior distribution would have been stated.

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Example 1 is uncontroversial because it alludes to a situation wherein historical data on disorder prevalence and accuracy of the health assessment are richly available. The following is a less data-rich example, which highlights an approach to assembling a prior distribution that is important for later discussion. Example 2. As a parent of a child with Down’s syndrome, the author is acquainted with a number of other children with Down’s syndrome, including two young boys who also live with an autism spectrum disorder (ASD). This has led him to become personally curious about the comorbidity of Down’s syndrome and ASDs. In what follows he uses his explorations of this topic to set up a simple, hypothetical example of Bayesian data-analysis in practice. Reviewing literature, he observes that Moss and Howlin (2009) are motivated by the biomedical question of whether a genetic syndrome associated with intellectual disability, such as Down’s syndrome, plays a causal role or is an additional risk marker for ASDs. A low rate of ASDs among individuals with Down’s syndrome, at or below 1%, which is the rate of ASDs in the general population, is consistent with the causal explanation implied in a theory that the affectionate personality profile associated with Down’s syndrome is protective against autistic-type behaviors. Startin et al. (2020) state an interest in variation among the patterns of comorbidity over lifespan, for the purpose of informing “clinical services, individuals, and their families and carers.” These two studies, and others, report comorbidity rates far higher than 1%. However, pinpointing the comorbidity rate is challenging, due partly to variations in the screening and diagnostic criteria applied across studies. Nærland et al. (2017) cite a range of values, between 5% to 39% comorbidity, which roughly agrees with the range of values reported in Moss and Howlin (2009). A data set examined in Startin et al. (2020) suggest distinct comorbidity rates across three different age groups, taking the values 5.7% for older children, 13.5% for younger adults, and 2.5% for older adults. With this knowledge on hand, now consider a hypothetical new study carried out using the three steps of the Bayesian approach. For concreteness, suppose the hypothetical researchers collect new information on 50 individuals with Down’s syndrome, under a sound study design, and subsequently determine, without errors, an incidence of ASD for three of these individuals. Hence, the comorbidity rate in just the newly measured data is 6% prevalence. In STEP 1 of the analysis, as defined in Table 1, the researchers compare diagnostic and screening criteria between their study and those cited above, as well as the age distribution of the population being examined. Based on these comparisons, they determine that the range of comorbidity rates between 5% and 15% describes a sensible combination of the available information, which puts most weight on the younger age groups reported in Startin et al. (2020), while not ignoring the remainder of available information. This “background” range of comorbidity rates is interpreted to mark the middle 95% of a prior probability distribution whose complete form is derived through the use of conventional mathematical tools. Specifically, the “beta-binomial” probability model, which has been developed for use with incidence data, is applied to provide a suitable mathematical form for both

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Fig. 1 Bayesian and Bayesian like analyses in four scenarios. Histograms B, D, F, and H are summaries of the posterior distributions associated with the prior distributions respectively represented by Histograms A, C, E, and G, each determined using the 3 in 50 prevalence in newly recorded data

the prior distribution of STEP 1 and data-generating distribution of STEP 2. (A more sophisticated analysis would modify the beta-binomial probability model to take into account the ages of the 50 individuals actually measured, but that would needlessly complicate the example, which is intended primarily for illustration.) Readers interested in technical aspects of statistical modeling and Bayesian analysis may find the references provided in Sect. 5 to be helpful. One result of working with the beta-binomial probability model is a more extensive set of summary values associated with the prior distribution. Through mathematical tailoring of this model so that its middle 95% of prior probability matches the 5% to 15% range, a median comorbidity rate of 9.2% emerges. Histogram A, in the top-left panel of Fig. 1, displays this prior distribution in graphical form, where the middle 95% of probability is marked by square brackets and the median is marked by vertical dumbbells. In STEP 3, application of Bayes’s Theorem “updates” the prior distribution in light of having measured a 3-in-50 prevalence rate in new data, to produce a posterior distribution with median 8.3% comorbidity and middle 95% of probability within the range 4.8% to 12.9% comorbidity. This posterior distribution is displayed as Histogram B in the top-left panel of Fig. 1. The hypothetical researchers list the posterior summary values in a statistical report of their findings: the median value, 8.3%, gives a single “best estimate” of comorbidity, while the middle 95% posterior values, 4.8% to 12.9%, offers a “most credible” range of comorbidity rates. The statistical analysis described in Example 2 is represented in the panel of Fig. 1 labeled Scenario 1. The three remaining panels illustrate variations of the analysis, all carried out on the same data but using different prior distributions. The

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variations are intended to set up discussion of nuance and aspects of controversy around the Bayesian approach. Scenario 2 depicts a Bayesian analysis derived from a prior distribution that describes background knowledge assembled from outdated literature. Its prior distribution, summarized in Histogram C, reflects since-debunked claims that ASDs are no more prevalent among individuals with Down’s syndrome than in the general population. Scenarios 3 and 4 illustrate two strategies for implementing a mimic of Bayesian analysis that ignores background information. Histogram E is a summary of a prior distribution with median comorbidity set to 6%, deliberately matching the comorbidity rate of the newly measured data; the width of its middle 95% of probability is set to 8%, which these hypothetical researchers determine is consistent with the maximum extent of uncertainty in the comorbidity rate that they are willing to accept. Histogram G is a summary of a prior distribution that is deduced as an abstract representation of a situation of ignorance about the comorbidity rate. It is determined by a line of mathematical argumentation known as “Jeffreys’s general rule” (see, e.g., Berger 2006, sec. 2.2), one of many that have been put forward by statisticians who pursue a theory of Bayesian methodology that would give preference to the practice of setting the prior distribution to an analytically derived configuration over collecting background knowledge. Far from serving as, perhaps, a remedy in extraordinary cases where responsible inquiry would face insurmountable hurdles to the collection of background information, the winds of exclusion have made Scenario 4’s abstractions into the dominant mode of Bayesian practice (cf. Mayo 2018, sec. 6.3).

2.2

Argumentation and Community Elicitation

Though all four of the scenarios indicated in Figure 1 resemble Bayesian analysis, some of these scenarios do not meet conventionally accepted standards of sound inquiry. For instance, Scenario 3 is clearly problematic for ignoring actual background knowledge, and instead defining prior uncertainty to achieve a desired outcome. Scenario 2 is problematic as well, for using outdated background knowledge. Scenario 4 is controversial for assembling a prior distribution abstractly, in ignorance of the research context. The analysis of Scenario 1 might reach the other side of peer-review and become published, at which point it could potentially inspire additional discussion across a broad community. The process alluded to in these hypothetical criticisms is one of argument and counterargument. Peer-reviewers would expect the authors to provide arguments in support of the decision they made in formulating their analysis. Otherwise, for example, the flaws of even Scenario 3 could not be detected. This and the broader process of argument and counterargument, where authors, by disseminating their work, make arguments to their communities and other members respond with counterarguments, is influential to the development of a community’s conventions of good practice and preferred lines of argumentation. The general process of specifying a prior probability distribution is commonly referred to as “elicitation,” which, in simpler language, roughly translates to

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“bringing forth.” When a Bayesian statistician brings forth a prior probability distribution, they have the conventions and preferences of their community in mind, as is necessary to prepare an argument for the validity of their insights. In this way, meaningful elicitation, because it takes place within the argumentative dynamic of a community, is a social process. Accordingly, the author uses the term community elicitation to refer to this social interpretation of how a prior probability distribution is determined. At times in what follows, especially in Sect. 4.2, he also uses the term generically, in reference to the community-centered process of bringing forth general knowledge. Existing literature contains occasional clear examples of a prior distribution’s community elicitation. The demographic study described in Daponte et al. (1997) uses Bayesian ideas in an attempt to forecast what the Iraqi Kurdish population from 1977 to 1990 would have looked like had the repression of the Kurds since 1977 not occurred. In that analysis, information is expressed using probability distributions; it is compiled from data gathered from various surveys, censuses, reports, and other data sources, and rigorously assembled from fertility, mortality, and migration rates, specific to time, age, and rural/urban status. This study has served for the author as an inspirational anchor as he has strived to clarify his vision of the community elicitation concept. Importantly, Daponte et al. (1997, p. 1256) remark that “Making one’s beliefs explicit using probability distributions allows other demographers to observe exactly how one views the sources of uncertainty in the phenomenon.” They state that this is important to “enhance communication among demographers,” as it allows that “others can then know on what they agree or disagree,” and because the “reasons given for particular probability distributions can be an important source of insight.” While the authors’ expressed interest in communication points to their valuing of healthy community, the latter assertions speak to criteria for assessing the quality of the knowledge that is learned; that is, the criteria are epistemic in character. The author regards two specific criteria as especially helpful for guiding discussions of the quality of the knowledge and general effectiveness of community elicitation: accessibility, which is helpful for addressing the mechanisms that allow community elicitation to function, and thoroughness, which is helpful for assessing the richness of the arguments produced. For example, to help a reader to “know on what they agree or disagree,” by grounding comments in familiar conventions, improves access; offering underlying reasons for a choice made during inquiry adds an additional layer to knowledge, making it more thorough. Accessibility might also include such considerations as parsimony, to encourage thoughtful crafting of descriptions for ease of communication and digestibility, or the use of devices such as varied repetition, which would create multiple access points that reach across the perspectives of a diverse audience. Thoroughness might include such considerations as precision, to encourage thoughtful attention to any gaps in description. Whatever a community’s formulation of accessibility and thoroughness, the author would hope that neither criterion would be equated with such simplistic considerations as the amount or intensity of argumentation, for those do not take into account that community elicitation can be degraded, or frozen, by argumentation that is disingenuous, cynical, or that otherwise adds to dialectical noise, whether deliberately or non-deliberately introduced. A special

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challenge for communities that aspire for social inclusion as well as effective community elicitation is to develop conventions and practices for filtering out noise while not excluding voices that would add to knowledge.

2.3

Bayesian Individualism

The reader may find the author’s above description of community elicitation curious for its familiarity. Is not engagement with one’s intellectual community what researchers already do? Is not careful discussion of background information already an expectation of sound research? The answer to each of these questions is, to a large extent, resoundingly yes. However, careful reading of the statistics literature on elicitation can engender a sense that elicitation is supposed to be about something else. A strong current in this literature is that elicitation has to do with the judgments of individual experts. As one example where individual expert-judgment could be warranted within its context, Goldstein (2006, p. 404) describes a softwaredevelopment application in which Bayesian methods are used to implement a set of testing procedures for a complex computer system during its development. In that example, background knowledge is collected from software testers who are already familiar with the software that is to be tested, and whose expertise “lies in the informed nature of the prior beliefs that they hold.” In other words, the source of information for compiling any prior probability distribution is the beliefs of individuals. The use of expert judgment, in this case, is seemingly warranted from the economic context, where evaluation of “success” in developing software is largely measured in terms of financial utility. The use of individual experts, and quantitative methodology itself, is less a means to gain knowledge than it is to implement a strategy for the company’s success. The mode of inquiry alluded to in Goldstein’s example is pragmatic, a stance that the author carefully evaluates in Sect. 4.2. Among its most disconcerting aspects is its capacity to reduce human actors to abstract containers, to be filled with whatever theory is needed to justify a strategy’s implementation. Traditional Bayesian inference, whose foundations draw heavily on economic abstractions, makes just such a move: one influential Bayesian insists upon a vision of the individual expert as a “rational man,” an entity that “always acts as if he had a probability distribution over the states of the world and a utility function describing the utility to him of each decision in each state; he chooses his decision by maximising the expected utility” (Lindley 1958, p. 192). This quote is in reference to a famous normative theory for rational decision-making developed by Savage (1954). Many Bayesians recognize that the “rational man” ideal and related normative theories are, at best, models (cf. Howson and Urbach 1989, sec. 3.c). Yet, they remain very influential. O’Hagan et al. (2006, p. 21) assert that these normative theories imply that “probability is the uniquely scientific way to represent uncertainty,” which indirectly asserts that Bayesian ideas are suitable not only as guidelines for economic strategy, but as a foundation for scientific inquiry in general.

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Adding to the strong sense in traditional Bayesian thinking that knowledge is not a phenomenon of community, but one of individuals, O’Hagan et al. (2006, p. 97) use the following language, which is common in the Bayesian literature: “To express uncertainty about an unknown quantity, we need to elicit the expert’s probability distribution for that quantity.” The suggestion, here, is that knowledge is brought forth by extracting it from a person’s mind. Accordingly, many Bayesian methodologists draw lessons from psychological experimentation on human judgment of uncertainty. For instance, O’Hagan et al. (2006) define a goal of reducing “bias” in elicitation, whose motivation derives from an influential series of such experiments. Building on this individualist perspective, a substantial body of literature is concerned with the combining of knowledge that is elicited from multiple experts in a process sometimes referred to as “belief aggregation” (which the author compares with community elicitation in Sect. 4.2).

2.4

Traditional Mistrust of Background Knowledge

Often accompanying traditional Bayesianism’s imperative to elicit and make use of a prior distribution is a tendency to not trust the knowledge that it describes. This is expressed in mathematical results that describe a phenomenon known as “stable estimation” (see Edwards et al. 1963), which asserts that the influence of the prior distribution on statistical results becomes negligible in the presence of a suitably large amount of data. Among studies that take a Bayesian approach, it is not infrequent to find a stable-estimation argument put forward as partial support for the trustworthiness of the study’s statistical reporting. Implied is an underlying message that the prior distribution does not really matter, provided there is new data at hand. To illustrate the stable-estimation phenomenon, recall Scenarios 1 and 2 of Fig. 1. Stable estimation implies that if the same prevalence rate, 6% comorbidity, is recorded in a larger sample, then, between the scenarios, the two posterior distributions would come closer to agreement, despite the two corresponding prior distributions being in quite different configurations. For instance, if 6% prevalence were recorded in a sample of 35,000 individuals (i.e., 2100-in-35,000 rather than 3-in-50 prevalence), then both posterior medians would be near 6% (6.0% for Scenario 1 and 5.8% for Scenario 2) and both middle 95% probability ranges would have widths around one-half of a percentage point (between 5.8% and 6.3% for Scenario 1 and 5.6% and 6.1% for Scenario 2). If the sample was even larger, so too would the posterior distributions be more similar. An interesting, subtle reframing of stable estimation has it describing a process by which the knowledge of two Bayesian statisticians eventually merge, once a sufficient amount of data becomes available. It is characterized in Diaconis and Freedman (1986, sec. 3) as a process of “intersubjective agreement.” This version is an important example of an appeal to eventual agreement as an epistemological basis for meaning in data analysis, and a step for traditional Bayesianism in the direction of viewing quantitative inquiry as having a social component. In this chapter,

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however, the author means to primarily emphasize the importance of disagreement in deepening knowledge. One facet of disagreement that is widely discussed among Bayesian practitioners is disagreement between a specified prior distribution and newly measured data. For instance, disagreement of this sort is alluded to in Scenario 2 of Fig. 1, where the recorded prevalence rate of 6% is far from not only the prior median of 1%, but any comorbidity rate that has non-negligible prior probability. Such broad deviation would perhaps motivate the hypothetical researchers to return to the literature in search of updated background information, and possibly revise their prior one closer to that of Scenario 1. Disagreement of this sort has given rise to statistical methodology known as “model checking” (cf. Gelman et al. 2013, ch. 6), the use of which is typically recommended as a routine step of good data-analysis practice. Less widely discussed, however, is the beneficial impact of potential disagreement among the stakeholders of a study and the communities they form. Notice in Example 2 the diversity in positionality of the relevant background literature: the conceptual framing of questions asked by Moss and Howlin (2009) is biomedical, while that of Startin et al. (2020) is of clinical care. The differences in these studies’ positionality give rise to questions about how the two positions interface in society, and shifts perspective to a deeper level of meaning around the topic under study, one where quantitative reasoning is rendered less relevant because of its abstraction. In other words, shining light on the differences between communities opens a path for a pursuit of knowledge that speaks more directly to human and societal meaning. With this in mind, the author likes to imagine a reversal of the stable-estimation argument, which could be expressed as follows: the relevance of statistical results becomes negligible when suitable attention is put to uncovering layers of perspective in background knowledge. Implied is an underlying message that data-gathering and analysis is scarcely more than a therapeutic exercise, provided that a sufficiently strong connection to community is maintained. The ground between a stable-estimation argument and its reverse is such that neither data-gathering and analysis nor differences in perspective are necessarily meaningless. In this middle ground, mixed methods research is appealing for offering a framework within which to synthesize and move forward with all pieces uncovered while collecting background knowledge. The use of Bayesian methods, because of the crucial role it assigns to prior information, is appealing for creating a seamless integration of quantitative elements within that framework.

3

Realigning Statistical Practice

The “scientific worldview” might more precisely be labeled as “Western science” or “the epistemologies of the North”; it refers to a collection of generally shared tenets of associated philosophies. De Sousa Santos (2018, p. 6) and Warren (2015, sec. 1.2), the former drawing on the latter, offer lists of these tenets, which the author combines, paraphrases, and condenses as follows: (i) A commitment to rationalism, and its absolute priority as rigorous knowledge. (ii) A distinction between the

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knower and the known, wherein the knower as a rational being. (iii) A belief in fundamental dualisms, such as objectivity versus subjectivity, and absolutism versus relativism, together with a requirement that objectivity is socially and politically neutral. (iv) Truth, conceived of as the representation of reality. (v) Universalism as a criterion for confirming, or otherwise assessing, a state of reality, referring to a condition that does not depend on any specific social, cultural, or political context. In this section, the author briefly reexamines and proposes alternatives to three themes among these tenets that are especially relevant to statistical practice: objectivity, confirmation, and universalism.

3.1

Objectivity

On the theme of objectivity, and its requirement of social and political neutrality, de Sousa Santos (2018, p. 40) describes its exclusionary effects as follows: “Neutrality is an ideological device in a society divided between oppressors and oppressed. In such a society, to remain neutral amounts to being on the side of the powerful and the oppressors.” Under division by the scientific worldview, the rhetorical action of a claim of objectivity in argumentation is to dare the reader to offer a counterargument, where they risk stigmatization as one less capable of dispassionate assessment, or perhaps general loss of legitimacy with the community. It is an attempt to shut down argumentation, that is, as Haraway (1988) characterizes it, a “power move.” Similarly, Harding (2008, ch. 1, sec. 2, para. 2) writes of exclusionary effects of the scientific worldview within science itself, noting that the “very standards of objectivity” have been incompetent to identify systemic gender bias in the sciences. She furthermore specifies that feminist criticisms of the scientific worldview “focus not on the prejudices of individuals (unpleasant as those can be for their targets), but rather on the assumptions, practices, and cultures of institutions, and on prevailing philosophies of science.” The author’s own discipline of statistics has been rattled by infuriating and heartbreaking instances of power misuse. In December 2017, Kristian Lum, a young academic who was known for her methodological work on biases in predictive policing software (see Lum and Isaac 2016), posted a blog entry (Lum 2017) detailing her experience of being sexually harassed at a large international meeting of Bayesian statisticians in 2010, one that the author had, in fact, attended. This revelation exposed a strain of misogynistic culture within the Bayesian community, which, in an article in The Guardian (Levin 2017), was connected to larger patterns of sexual misconduct across statistics and data science, wherein “serial harassers rarely face consequences.” What Harding’s comments imply is that effective change from these destructive patterns toward inclusion and equity within Bayesian and scientific communities requires reexamination of foundational philosophies, and reconsideration of the methodologies they deem legitimate; both are efforts that go beyond intensified recruitment and initiatives for cultural change, which is where professional institutional bodies tend to stop.

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In the author’s dream of a realignment of statistical practice with a socially inclusive worldview, he dismisses objectivity’s rhetoric of neutral declaration in favor of a conception of objectivity as an earnest, vulnerable call to one’s community. De Sousa Santos (2018, p. 44) writes of alternative conceptions of objectivity, wherein “objectivity is always intersubjectivity, indeed, self-conscious intersubjectivity,” hence knowledge is cocreated. It is cocreated by all participants in community elicitation, which, as Nind (2014, p. 5) reminds us, could extend beyond those with “researcher-only expertise” to “people being researched.” Under a socially inclusive worldview, a call for objectivity is to be recognized as no more than an author’s attempt to persuasively anchor an argument to community conventions. For instance, in Example 2, the hypothetical researchers might argue that it is “objective” to incorporate past statistical reporting of comorbidity rates because it is consistent with an agreed-upon role for empirical measurement. Or, in a different scenario, an author might attempt to anchor their arguments to a theoretical framework, or mode of thinking, that has been ascribed validity within the community. Aspirationally, the environment for elicitation would be one in which an author claiming objectivity would always be clear about their positionality, about their own understanding of the conventions invoked, and would be open to the possibility that not all members of the community are satisfied with them.

3.2

Confirmation

On the theme of confirmation, statisticians tend to be especially conscious of its objectives and specific philosophies associated with them, which they are often hired to apply. Confirmatory objectives pose a particular challenge for socially inclusive practice, since confirmation is itself an exclusionary assertion, or, at any rate, its conclusions risk being taken as justification for rejecting responsibility to some of inquiry’s stakeholders. Consider, for instance, Karl Popper’s confirmation theory of “falsification,” which, in coordination with a “frequentist” interpretation of probability (see Mayo 2005), underlies the most widely taught statistical methodology for confirmation. In Popper (1962, p. 39), he is careful to point out that his interest is not in criteria for meaning, but in “drawing a line (as well as this can be done) between the statements, or systems of statements, of the empirical sciences, and all other statements.” That is, his purpose for falsification is to create a separate category for a system of knowing – he labels it “empirical science” – to the exclusion of all others. A distinct layer of interpretation positions this outlying category as rising above (i.e., more meaningful than) all others; subsequently, communities that hold reverently to empirical science have a tool with which to position themselves as rising above all others, and to furthermore position other communities’ ways of knowing, if not the communities themselves, as sub-human and disposable. Traditional Bayesian thinkers avoid Popper’s “demarcation” approach, as well as issues of meaning, in favor of treating confirmation as a problem of decisionmaking. As the author has already discussed in Sect. 2.3, the existing, disappointing solution is the model of a “rational man” who makes decisions by “maximising the

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expected utility,” with its peculiar focus on individualism. Yet, confirmation, even from the perspective of decision-making, remains problematic to socially inclusive practice because of its basic binary, specifically because of a tendency for the decision made to be used as reason to avoid responsibility to those it excludes, or to issues that are lost by the yes-no framing. For example, in legal justice systems this plays out as inattention to the rights of an offender, as documented in Moore and Mitchell (2011), and resistance to the adoption of restorative practices that carefully attend to, as Polite (2018) describes, an “offense’s roots and resulting wounds” (p. 103). In the author’s dream of a realignment of statistical practice with a socially inclusive worldview, he dismisses the binary of confirmation in favor of accessible and thorough description of what is assumed and what is learned. As discussed in Sect. 2.2, Bayesian methodology, when practiced in the context of community elicitation, is appealing in decision-making for its transparency and extensive capacity to identify the assumptions of the decision-maker.

3.3

Universalism

Universalism underlies a frequent goal of statisticians, which is to generalize the results of a data analysis. When teaching beginning students, the author often covers a traditional “sampling” model for generalization by which patterns noted in sample data are to generalize to the population from which the sample is randomly drawn. Further abstraction of this model leads to ideas supporting universal generalization to “truth” or “states of nature.” Among criticisms of universalism, he finds those expressed in Haraway (1988) to be particularly helpful. Haraway (1988, p. 581) calls out a version of universalism that manifests not through conceptual models but through vision. She writes of endless technological enhancements to vision (e.g., in the form of “artificial intelligence-linked graphic manipulation systems”) that render it a feast of “unregulated gluttony,” putting the myth of “seeing everything from nowhere” into ordinary practice, a performative feat that she calls a “god trick.” The result is a “false vision promising transcendence of all limits and responsibility” (p. 583). This criticism is particularly relevant today, to data science, an impressively fast-growing, newly branded discipline that is adjacent to statistics (see MayerSchönberger and Cukier 2013, for an enthusiastic description). Its methods, integrated with sophisticated computational architectures, are the backbone of wellknown big-technology companies, and of the “data-driven” economy in general. Their flexibility in visualizing complex patterns in data, and capabilities for application to massive data sets and high-volume analysis, drive a sharp intensification of the performative aspect of data-analysis that is concerned with illusions of universalism and control. In the author’s dream of a realignment of statistical practice with a socially inclusive worldview, he dismisses universalism’s dazzling illusions in favor of connection and translation of knowledge. The latter is a reflection of Haraway’s

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assertion of feminists’ need of an “earth-wide network of connections, including the ability partially to translate knowledges among very different – and powerdifferentiated – communities” (pp. 579–580). As a stance for statistical methodology, this need is unusual for being in line with objectives that are usually taken on by qualitative methods, where techniques such as narrative and storytelling can be effective at creating connection by activating the reader’s sensitivity to themes that are revealed during the course of research. Consider, for example, the context of auto-ethnography, wherein Ellis (2004, p. 195) offers that the use of storytelling “brings ‘felt’ news from one world to another.” When aligned with a socially inclusive worldview, these are techniques that statistical methodology stands to become part of, especially within a context of mixed methods research. The performative aspect of data-analysis would bypass chest-thumping displays in favor of “dialogical performance,” a stance that Conquergood (1985, p. 9) describes as having an aim to “bring the self and other together” in a dialogue that “resists conclusions” and is committed to continued dialogue. When aligned in this way, the uniquely Bayesian operation of updating prior to posterior knowledge would be less a technical calculation than a story of transformation.

4

Epistemological Grounding

Although Sect. 3 lays out the author’s vision for realignment of statistical practice with a socially inclusive worldview, he worries that his specific proposal for the use of Bayesian methods leaves unresolved issues that he expects some philosophically minded readers, and some of his Bayesian colleagues, would be curious to have addressed. Given his expressed dissatisfaction with traditional Bayesian epistemology as grounding for socially inclusive practice, it would be fair to wonder what sort of epistemology he would find satisfactory. Similarly, even if he has persuaded his reader that elicitation is a social process, it would be fair to wonder how he came to settle upon accessibility and thoroughness as guiding criteria for pondering questions of how community elicitation is to be carried out effectively. Attention to these wonderings takes this chapter to the deeper places among philosophical tensions between qualitative and quantitative stances; yet, these are crucial places for socially inclusive research to visit, in order that the practitioner may produce well-grounded arguments. He himself travels to these places as much out of inspiration by the courage of scholars such as Haraway, Harding, and de Sousa Santos in calling out exclusionary knowledge systems; he seeks to replace such systems at their roots with a set of responsible guiding principles.

4.1

The Meaning of Probability in Community Elicitation

Because Bayesian methods are rooted in the concept of probability, epistemologically grounding these methods is a matter of offering a meaning for probability that is consistent with a community-based conception of elicitation. Epstein (2009, p. 11)

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identifies three interpretations of probability, all touched on in this chapter, that have been important to its mathematical development: sampling theory, frequentist theory, and traditional Bayesian epistemology. None of these quite capture the manner in which the author envisions probability would be understood in community elicitation, where it would serve entirely as a device for description, and would be free of allusions to idealized processes or entities that would ascribe its meaning to some equally idealized picture of reality. To make sense of probability, he turns to language-based social theories of knowledge, which are a common source of philosophical grounding outside of the scientific worldview. Specifically, he finds it helpful to draw on the later work of Ludwig Wittgenstein, as interpreted in Bloor (1983), for its attention to theories of mathematical knowledge. Bloor (1983) describes the basic building blocks of Wittgenstein’s ideas about language and meaning, which include the concepts of “forms of life” and “language games.” The former is, roughly, the way that a community lives, and the latter is, roughly, the ways in which a community interacts and communicates. These aspects of a community allow its members to make sense of their shared world. In discussing mathematical truth, Bloor writes of Wittgenstein’s rejection of the Platonist view that “mathematical results are discoveries about a special realm of objects that exist prior to our knowledge of them” (pp. 83–84). Wittgenstein instead stresses the importance of usage in meaning. Reality, of an “entirely different sort” than Platonist reality, is that certain techniques are useful to a community; “it’s an ethnological fact,” writes Wittgenstein, “it’s something to do with the way we live” (as cited in Bloor, p. 94). On the meaning of numbers, Wittgenstein offers a variation on demonstrations put forward by the nineteenth-century philosopher J.S. Mill that involves manipulating groups of pebbles. In Wittgenstein’s version he stacks one-hundred marbles in rows of ten, as illustrated in the left panel of Fig. 2, and offers that the arrangement demonstrates “the role which ‘100’ plays in our calculating system” (as cited in Bloor, p. 94). Bloor writes that “the emergence of the mathematical out of the physical occurs when the empirical manipulations are put to a certain use; when they become taken up in a certain language-game; when they become part of a certain technique; and when they become subject to certain conventions and norms” (p. 94). In other words, the stack of marble-rows is not a representation, but a tool in

Fig. 2 The roles of “100” (left) and of probability (right)

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the language that has been developed for discussing calculation; the use of that tool within language is what gives the concept of one-hundred meaning. Probability may be understood in precisely this way: its meaning – that is, the meaning of the probability histograms displayed in Fig. 1 and their mathematical generalizations that define probability theory – is entirely determined by how it is used within community elicitation, as a device of the language that is used to describe uncertainty. In contemplating this idea, the author likes to imagine an alternative history where Wittgenstein explains it to his statistics class: he arranges one-hundred marbles into a histogram, as in the right panel of Fig. 2, and offers that they demonstrate “the role which probability plays in statistical practice.”

4.2

Evaluating Community Elicitation

As for evaluating the effectiveness of community elicitation, a major motivation for the author’s choice of accessibility and thoroughness as evaluative criteria is his personal experience of analyzing data: when he becomes absorbed in statistical practice, and his curiosity is aroused, it feels correct to say that these criteria guide him through the production of an analysis. Nevertheless, he also came to this choice through a process of whittling down a collection of other possibilities. In this section, he examines several alternative criteria, and offers his thoughts on how he came to find them unsatisfying. Note that, in what follows, he expands his usage of the term community elicitation to cover not just elicitation of a prior distribution but of knowledge in general. His dismissal of universal generalizability renders concepts such as “truth” or “states of nature” irrelevant as building blocks for evaluative criteria. A seemingly related concept, one that is social in nature, is “agreement,” which is the basis of one version of the stable-estimation argument he described in Sect. 2.4. However, he is persuaded by an argument in Goldman (1999, sec. 3.1.A) whose conclusion is that agreement is insufficient for evaluating the processes of inquiry. His reasoning is that it is easy to come up with examples of agreement situations that are clearly ineffective, such as consensus achieved by totalitarian practices. His view is that evaluation would instead take into account tensions between agreement and disagreement, which give rise to variation in usable knowledge systems across a diversity of communities. A task of epistemology is then to describe the “truths” about which a community agrees, and the “dimensions” along which distinct communities disagree, a task that accessibility and thoroughness are suitable to evaluate. His early thinking on this topic focused instead on criteria based on trust and their overlap with pragmatism, by which he means the view that inquiry is valued for the utility of its outcomes. At one point he contemplated the suitability of giving preference to practices that foster public trust in community elicitation itself, such as practices that encourage transparency. However, he found this criterion problematic for its close connection to democracy, and the nuanced role of public trust within that political system. For instance, the arguments in Lenard (2008, p. 313) make clear that “alongside trust we need to adopt a kind of vigilance, an attitude that is

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motivated by mistrust, in order to maintain a healthy democracy.” Yet, by building in such nuance to a criterion based on trust, it seems to him that the result would be instrumental to a pragmatic preference for practices that enable one’s community to thrive. Why not just accept a pragmatist criterion? If one were to take a pragmatist’s view, questions arise as to how to take into account the multiplicity of communities, and the possibility of individual membership in multiple communities. Those who study social aggregation, which includes a sizable number of traditional Bayesians, take on similar questions, and examine the potential for resolution using such rational strategies as voting or compromising; but, these typically lead to logical paradoxes: For example, Garthwaite et al. (2005) conclude that voting often leads to intransitivity (e.g., A > B > C > A), and nontrivial compromises tend to violate the “Pareto Principle,” which is the requirement that “if each member of the group prefers A to B, then the compromise cannot prefer B” (p. 697). It seems that rational aggregation strategies suffer from their own insistence on rationality. A promising alternative to aggregation is to look through the lens of argumentation, expanded to cover the processes of argumentation across constituent communities. De Sousa Santos (2018, p. 40) comments on how this plays out: To start, he is blunt in connecting trust to pragmatism, writing that “trust is always referred to in relation to the objectives to be reached using the knowledge that is trusted.” He then defines two categories of objectives for knowledge, “knowledge as regulation” which is concerned with moving from chaos to order, and “knowledge as emancipation,” which is concerned with moving from exclusion to solidarity. Using this language, he identifies two problems with the landscape it describes: The first is that under colonialist and imperialist agendas, knowledge as emancipation is violently suppressed. The second is that the primacy of knowledge as regulation has tended to be “pushed to the utmost,” to the point of cannibalizing knowledge as emancipation by reconceptualizing solidarity as chaos and exclusion as order. Drawing on these ideas to account for pragmatism in argumentation across communities, the author finds accessibility and thoroughness to be useful for evaluating knowledge conceived of either as regulation or as emancipation; but, it is significant that their use within the latter is motivated directly rather than, in large part, through the baggage of the scientific worldview. Ultimately, he finds that accessibility and thoroughness have the double use of evaluating both description itself, as standalone concepts in their sense from Sect. 2.2, and of evaluating the pragmatic use of the power of description, most directly in struggles for achieving social inclusion against violent and cannibalizing pressures of exclusion.

5

Conclusions and Future Directions

As the author writes the conclusion to this chapter, he recalls the path he described in Sect. 1.1, and its accompanying oppressive feeling that led him to move from domain to domain in an attempt to escape the scientific worldview, but never succeeding. Having now visualized a dream of realignment, he now feels relief, liberation, and hopefulness at having potentially opened a viable way to operate

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within his discipline as an integrated self. He feels released from a sense that practicing statistics necessarily puts him under the weight of a stifling machine. In what follows, he offers a few comments on a new dream: the way forward. As Meixner and Hathcoat (2018) discuss, ongoing debate around mixed methods research struggles with contradictions between the foundations of qualitative and traditional quantitative methodology. They write of how “philosophical agnosticism,” a potential consequence of a researcher’s inattention to their own “mental model” toward inquiry, can “endanger various facets of the research design, most especially the interpretation phase” (p. 11). Summarizing the current state of debate, they write that some scholars maintain that quantitative and qualitative research are inherently incompatible and cannot be integrated; others assert they can be integrated even while respecting distinctions between their differing philosophical underpinnings; and, still others allow integration under cover of a pragmatist position, though one that has tended to be unhelpful for informing substantial decisions during the course of research. Hathcoat and Meixner (2017) offer further discussion of these issues, and contribute a “conditional incompatibility thesis” to assist in resolving them. The realignment of statistical practice that the author has described in this chapter bypasses this struggle entirely by replacing traditional quantitative methodology with a version whose foundations are radically altered for compatibility with qualitative perspectives. On the other hand, “radical” is a relative term: some may find the author’s imaginings insufficiently radical, still carrying an imprint of the scientific worldview. De Sousa Santos (2018, p. 5) would perhaps characterize the author’s realignment as an “internal criticism.” Certainly, however, the way forward is not closed off to the possibility of alternative realignments. One troublesome practical issue that does not appear to have a quick resolution is a lack of materials for learning about Bayesian methodology within the framework of this chapter. Nearly all textbooks on the topic of Bayesian methods are written at the graduate level (Robert 2001; Gelman et al. 2013), for students with specialized mathematical training, although a handful of undergraduate Bayesian textbooks have been published (Berry 1996). Moreover, the available learning materials heavily emphasize the use of default prior distributions, akin to that of Scenario 4 in Fig. 1, and leave little to no room for covering elicitation in any systematic way, apart from its role in the conceptual development of Bayesianism. On elicitation, the books by O’Hagan et al. (2006) and Kadane (2011, 2016) are important resources, but are not configured for crossing the qualitative-quantitative dyad. What this situation suggests is work to be done on the way forward, that of creating educational bridges that would enable a flowering the methodological bridges that the author has envisioned here.

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Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Theoretical Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Descriptions of Measures of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A Taxonomy for Evaluating the Psychometric Properties of Measures of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Evaluation of Content Validity of Measures of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Methodology to Evaluate Content Validity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Quality of Content Validity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Thematic Analysis to Establish the Domains of Social Inclusion . . . . . . . . . . . . . . . . . . . 6 Evaluation of the Remaining Psychometric Properties of Measures of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Methodology to Evaluate the Remaining Psychometric Properties . . . . . . . . . . . . . . . . . . 6.2 Quality of Remaining Psychometric Properties of Measures of Social Inclusion . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

374 374 376 377 379 380 381 382 386 386 388 389 390

Abstract

Social inclusion is a construct used to mean many things to different policy and service delivery audiences. As a construct, social inclusion has an inherent “feel good” element, suggestive of individuals and communities promoting and encouraging the inclusion of those situated on the margins. However, a critical examination of peer reviewed and policy literature suggests the construct is not consistently defined, nor applied and social inclusion has largely represented an aspirational goal. This has implications for the robust and consistent measurement of social R. Cordier (*) Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK e mail: [email protected] R. Martin Social Work and Human Services, RMIT University, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_18

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inclusion outcomes and impacts. This chapter examines a range of definitions of social inclusion and traces how these inform the operationalization of the construct. Descriptions of the identified measures of social inclusion are provided. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) taxonomy, terminology, and definitions of outcome measurement properties is used in this chapter to report on the quality of studies and the psychometric properties of identified measures of social inclusion. Evaluation of the content validity of the measures is presented, by providing a synthesis of the ways in which social inclusion has been operationalized in outcome measurement, including a thematic analysis to establish the domains and sub-domains of the construct from a measurement perspective. All identified measures are then plotted against the domains and sub-domains of social inclusion. The quality of the remaining psychometric properties is also evaluated. The chapter concludes with recommendations for improving the future measurement of social inclusion to improve operationalization and outcome measurement of the construct. Keywords

Measurement · Psychometrics · Reliability · Validity · Responsiveness

1

Introduction

Improving social inclusion opportunities for population health has been identified as a priority area for international policy (World Health Organization 2008). Historically, social inclusion focuses on health, social, cultural, and income inequalities and imbalances (Atkinson 1998). The term social inclusion is used to illuminate the importance of engagement and participation in society as a means of improving quality of life and reducing social isolation (Oxoby 2009). This supposition is based on the premise that individuals and groups that are actively included and supported to participate in valued social, economic, and cultural activities are likely to be better off than those who face insecurity, exclusion, and deprivation (World Health Organization 2008). Given that social inclusion is a policy aspiration for many governments, there is a need for a robust evidence-based measures of social inclusion to accurate capture policy outcomes. This chapter explores the various ways in which social inclusion is defined and applied in policy and practice. The process and methods involved in assessing the psychometric properties of instruments measuring social inclusion are considered. Following this, the chapter discusses the implications of significant variability in defining and operationalizing social inclusion, along with challenges in measurement of the efficacy and impact of interventions and related outcomes.

2

Theoretical Background

Without a doubt, social inclusion as a concept and ideal has much to offer. It is both values based and pragmatic, promising marginalized individuals, groups, and communities a place within the mainstream. Social inclusion promotes diversity,

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involvement, and participation. Predictably, social policies and service delivery practices which embrace a social inclusion stance have a “feelgood” element; where differences are valued and there is a place for all, regardless of their experiences of disadvantage and exclusion. A quick scan of recent publications referencing social inclusion highlights the wide range of contexts, understandings, and applications (Davey and Gordon 2017). For example, there is a significant body of knowledge related to disability and social inclusion (Bigby 2012; Thill 2015; Van Asselt et al. 2015). This includes physical, intellectual, cognitive, and development forms of disability, across the lifespan, yet with a heightened emphasis on children and young people (Imms et al. 2016; McClure 2000). Often, disability-related social inclusion literature considers domains such as education, employment, and community engagement. Access to, experiences of, and transitions from education dominate much of the literature (Halafoff 2015; Peters and Besley 2014). Similarly, the literature on mental health and social inclusion is also growing and like the material on disability, demonstrates preoccupations with areas such as employment, social relations, and involvement in services, with emphasis on access to safe, discrimination-free employment (Boardman 2003; Silver 2010). Understandings of social inclusion rest on notions of social exclusion, implying that it is only possible to “know” one by knowing the other (Peters and Besley 2014). In fact, social policy and service delivery practice examples highlight the interchangeable use of the terms and relationship between the two concepts (Australian Institute of Family Studies 2008). A review of the policy and academic literature highlights a range of theoretical and political perspectives underpinning various definitions of social inclusion and exclusion (Cordier et al. 2017). Social inclusion and/or exclusion as a focus of social policy can be traced from the 1980s in Europe, with a noticeable adoption in Britain in the 1990s with the Blair government’s Third Way politics, followed by Australia a decade later (Levitas 2005). While initial consideration of social exclusion focused on poverty, unemployment, disability, and incarceration (Silver 2010), this has changed to embed the emergence and popularity of neoliberal approaches to the role of the State in citizen’s lives, highlighted by concepts such as mutuality and personal responsibility. Consequently, social policy responses to, and conceptualizations of, social inclusion and exclusion have moved away from a focus on poverty and the role of the Welfare State to consideration of “social cohesion, stakeholding (and) community” (Levitas 2005, p. 2). Alongside the evolving social policy approach to inclusion is the rise of service delivery and practice framings of social inclusion. Most notably, service delivery approaches to social inclusion focus primarily at the individual level, examining the instances and examples of exclusion for particular groups such as those living with disabilities. These practices focus on interventions which promote inclusion in education, employment, community activities, and social relations. While different social inclusion approaches appear different (i.e., policy which focusses on economic participation of citizens as a means of ending exclusion and service delivery which seeks to bring those on the margins “in”), citizenship is central. Participation and involvement indicate a relationship between rights, responsibilities, and citizenship. These civic engagements and enactments of rights and responsibilities are spread across legal, political, and social spheres, and reflect the

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relationship between the citizen and the state. Linking social exclusion to citizenship, Burchardt et al. (1999, p. 230) argue that “An individual is socially excluded if . . . he or she does not participate in the normal activities of citizens in that society.” This quote draws attention to the normatively framed expectations of citizens in inclusion and exclusion discourses – “good” citizens are those engaged in employment or education and this includes disabled or impaired citizens. Taken at face value, the policy and service delivery orientations towards social inclusion and exclusion appear to reflect different positions, yet they share a common, normatively informed valuing of economic engagement and participation. To summarize: citizenship is categorized according to the level of participation in the economy. This of course raises questions about noneconomic participation, often undertaken by those on the margins, such as the unemployed and underemployed and people living with disabilities. Further, notions of citizenship and social inclusion have been extended to include involvement in services. For example, are services socially inclusive or exclusive? These explorations highlight a different form of citizenship – that of service citizenship. Yet, some authors argued that service citizenship (meaning service users feel included and “at home” in a service) is an example of social exclusion because citizenship is only enacted in the context of the service and not in the broader community (Rowe and Davidson 2016). This further highlights questions of acceptance and community willingness to embrace the excluded, along with ideas about expected or forced citizenship and participation (Davey and Gordon 2017). These discussions suggest competing, contradictory, and at times, overlapping approaches to understanding and conceptualizing social inclusion. If then, there is much conceptual and theoretical ambiguity around the definitions and ultimately operationalization, can social inclusion and the interventions claiming to address social exclusion be measured?

3

Descriptions of Measures of Social Inclusion

This section provides an overview of 25 measures of social inclusion identified from instrument development and validation studies. A list of the 25 identified measures can be found in Fig. 3. The purpose of examining these measures was to explore the construct validity of measures of social inclusion. The measures are described in terms of the sample populations for which the measures have been validated, the characteristics of the identified measures, and the response scales used by the measures. Twenty four of the 25 measures involved an adult population only and one measure used an adolescent sample (12–17 years). Of the 25 measures, 10 were developed and validated using a sample of adults with severe mental illnesses. Only one measure was developed and validated with both mentally healthy adults and adults with severe mental illnesses (Social and Community Opportunities Profile [SCOPE] (Huxley et al. 2012). The findings indicate that the measures were mostly validated in populations with high levels of education with only two measures using

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samples of adults without a tertiary education and one measure using a sample of adults with an intellectual disability and their carers. Most measures were validated in clinical samples, with only six validated with community samples, of which three of these measures used samples from rural communities or low-income neighborhoods. These findings indicate that only a few of the measures were validated using vulnerable and hard-to-reach populations. Most of the measures (n ¼ 19) were published since 2005. Apart from the Guernsey Community Participation and Leisure Assessment (GCPLA), which used carer-report if the respondent was unable to answer for themselves (Baker 2000), 24 of measures were self-report. Of the self-report measures, 3 were administered online, and 11 were administered via paper and pen. The 10 remaining measures collected responses via interviews, of which 7 collected responses faceto-face, 2 collected responses over the telephone, and 1 via both modalities. While response options varied greatly between measures, most measures used Likert-type response scale options (n ¼ 16) and five reported differing response types per item. Five of the Likert scales used a 6-point scale, seven included a 5-point scale, and three included a 4-point scale. Measures requiring differing response types utilized a combination of ordinal and nominal scales. The Sense of Community Index (SCI) reported the use of a dichotomous (true or false) rating system for its scale (Stevens et al. 2011). The Inclusion Web utilizes a visual “web” in which respondents list people or places under various response categories (Hacking and Bates 2008). Response options for the Activity and Participation Questionnaire (APQ) were not reported (Stewart et al. 2010).

4

A Taxonomy for Evaluating the Psychometric Properties of Measures of Social Inclusion

Given the challenges with definition and, as demonstrated previously, the considerable variety in approaches to measures, it is important to consider how reliable measurement of social inclusion can be undertaken. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) are a set of guidelines for conducting systematic reviews on the psychometric properties of outcome instruments (Prinsen et al. 2018; Terwee et al. 2018). These guidelines include psychometric properties, methodological quality (Mokkink et al. 2018a), assessment criteria (Prinsen et al. 2018; Terwee et al. 2018), and a summarized rating system for methodological and psychometric quality (Prinsen et al. 2018; Terwee et al. 2018). The COSMIN taxonomy (Fig. 1) provides consensus-based terminology and definitions on nine psychometric properties, comprising three domains of validity, reliability, and responsiveness (Mokkink et al., Mokkink et al. 2010). The most significant advantage of the COSMIN guidelines over other methods is that they are designed to assess the quality of all domains of psychometric properties comprehensively, while other methods evaluate only some aspects of psychometric properties.

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Fig. 1 COSMIN taxonomy of measurement properties

As it applies to the construct of social inclusion, the first domain of validity is defined as the extent to which an instrument measures social inclusion (i.e., the intended construct). Within this domain, three further psychometric properties are considered (Mokkink et al. 2010): • Content validity (i.e., the extent to which the content adequately reflects social inclusion) is comprised of the following three aspects (Terwee et al. 2018): – Relevance (i.e., the degree to which items are relevant to social inclusion within a target population and purpose of use) – Comprehensiveness (i.e., the degree to which key concepts of social inclusion are included in an instrument) – Comprehensibility (i.e., the degree to which items are easily understood by respondents) • Criterion validity (the extent to which the scores adequately reflect a gold standard measure of social inclusion) • Construct validity (i.e., the extent to which the scores are consistent with hypotheses which assume that an instrument validly measures social inclusion). This is then subdivided into the following three psychometric properties:

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– Structural validity (i.e., the extent to which the scores adequately reflect the dimensionality of social inclusion) – Hypothesis testing (i.e., the extent to which the scores are consistent with hypotheses on differences between relevant groups and relations to scores of other instruments) – Cross-cultural validity (i.e., the extent to which a translated or culturally adapted version of an instrument of social inclusion adequately reflects the performance of the items of the original instrument) Reliability is the second domain and relates to the extent to which scores remain the same for repeated measurements. The reliability domain further comprises: • Internal consistency (degree of the interrelatedness of items) • Reliability (the proportion of total score variance which is due to true differences among respondents) • Measurement error (systematic and random error of a respondent’s score that is not due to true changes in the construct being measured) Responsiveness (i.e., the ability to detect change over time) is the third and a separate domain. The sections that follow will use the COSMIN taxonomy as a framework to evaluate the quality of the 25 identified measures of social inclusion. First, the methodology used to determine the quality of the psychometric properties will be explained, followed by the findings of the evaluation. This analysis will be done in two stages. The first stage will focus on the content validity of the measures and the second stage will focus on the remaining psychometric properties of the measures.

5

Evaluation of Content Validity of Measures of Social Inclusion

The most important psychometric property of an instrument is its content validity (Prinsen et al. 2018; Prinsen et al. 2016). The COSMIN guidelines recommend evaluating content validity of an instrument first. The reason being that if it is unclear what construct(s) the instrument is actually measuring, then the evidence of the remaining psychometric properties is compromised (Patrick et al. 2011; Streiner et al. 2015). For example, a high Cronbach’s alpha (the criteria used to indicate internal consistency) does not guarantee that all domains related to social inclusion are covered by the measure. Similarly, a high test–retest reliability or adequate responsiveness does not imply that all items are relevant to social inclusion (Cortina 1993; Sijtsma 2009). Another advantage of using the COSMIN guidelines is that both traditional (classic test theory) and contemporary psychometric theories (item response theory) can be employed to evaluate the quality of an instrument’s psychometric properties (Prinsen et al. 2018).

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However, while COSMIN guidelines are comprehensive, precise, and balanced, they are complex and require in-depth knowledge of psychometrics and the ability to interpret the quality rating criteria of psychometric properties and skills in conducting systematic reviews (Christian et al. 2019; Dobbs et al. 2019). Further, weaknesses in any of three aspects of content validity (relevance, comprehensiveness, and comprehensibility) can impact all other psychometric properties (Wiering et al. 2017). If, for example, items are irrelevant (poor relevance), then the interrelatedness among the items (internal consistency) may decrease structural validity and interpretability of an instrument. Further, if an instrument misses some key concepts of the construct (poor comprehensiveness), it may reduce the ability of an instrument to detect real change in the construct of interest before and after intervention (i.e., poor responsiveness; Terwee et al. 2018). Evidence for rating these three aspects of content validity is mainly derived from instrument development and content validity studies (Terwee et al. 2018). The development study refers to a study generating relevant items based on input from the target population for a new instrument (item generation) and evaluating comprehensiveness and comprehensibility of a draft instrument by interview or survey with the target population (cognitive interview or pilot test). The content validity study refers to a study asking target populations and professionals about relevance, comprehensiveness, and comprehensibility of an existing instrument. As additional evidence, the original instrument (i.e., content of instrument itself) should also be rated based on subjective opinion of reviewers in terms of relevance, comprehensiveness, and comprehensibility (Terwee et al. 2018).

5.1

Methodology to Evaluate Content Validity

Given the range of definitions and applications of social inclusion as a construct, the evaluation of content validity of instruments claiming to measure these impacts and outcomes is particularly important. The following two sequential stages underpin the evaluation of content validity:

5.1.1 Stage A: Evaluation of Methodological Quality of Studies The methodological quality of studies on instrument development (Step A.1) and content validity (Step A.2) are assessed using the COSMIN Risk of Bias checklist (Mokkink et al. 2018b) and involve two steps. Step A.1 Firstly, the instrument development studies are assessed using items from the checklist which consists of a separate rating of the quality of the “instrument design” (item generation) to ensure relevance of a new instrument and “cognitive interview or pilot test” to evaluate comprehensiveness and comprehensibility of a draft instrument (Terwee et al. 2018). Step A.2 Next, content validity studies are assessed using a checklist, comprised of one set of items assessing quality of studies that ask participants about relevance, comprehensiveness, and comprehensibility, and another set assessing

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quality of studies that ask professionals about relevance and comprehensiveness (Terwee et al. 2018).

5.1.2 Stage B: Evaluation of Content Validity of Instruments The content validity of instruments is assessed for three separate aspects (relevance, comprehensiveness, and comprehensibility) in three sequential steps: Step B.1, Step B.2, and Step B.3. Step B.1. The results of single studies are rated for each instrument development study, content validity study, and content of the instrument itself. By using the same criteria, the content of the original instrument (items, response options, and recall period) are rated based on the subjective judgment of the reviewers. Ratings for each source of content validity evidence are scored as sufficient (85% or more of the instrument items meet the criterion: (+); insufficient (less than 85% of the instrument items meet the criterion: (); or indeterminate (lack of evidence to determine the quality or inadequate methodological quality of studies (?). More detailed information on these criteria and how to apply them can be found in the user manual on COSMIN methodology for assessing content validity (Terwee et al. 2018). Step B.2 All results from available studies on development and content validity for each instrument and the reviewers’ ratings on content are qualitatively summarized into overall ratings for relevance, comprehensiveness, and comprehensibility of the instrument (i.e., all ratings determined in the previous step need to be jointly assessed; Terwee et al. 2018). The focus in this step is on the specific instrument, while in the previous step, the focus was on single studies. An overall sufficient (+), insufficient (), inconsistent (), or indeterminate (?) rating was given for relevance, comprehensiveness, and comprehensibility for each instrument (Terwee et al. 2018). Step B.3 The quality of the evidence (i.e., the total body of evidence used for overall ratings on relevance, comprehensiveness, and comprehensibility of an instrument) are graded (high, moderate, low, or very low) using a modified Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach (Guyatt et al. 2008; Terwee et al. 2018). The GRADE approach is used to downgrade level of evidence when there are concerns about the quality of evidence. The starting assumption is that the overall rating is high quality. Next, ratings are downgraded one or more levels (to moderate, low, or very low) if there is serious or very serious risk of bias (i.e., limitations in the methodological quality of studies), inconsistency (i.e., unexplained heterogeneity in results of studies), and/or indirectness (i.e., evidence from different populations than the target population of interest in the review; Terwee et al. 2018). More specific information about grading the quality of evidence can be found in the COSMIN user manual for content validity (Terwee et al. 2018).

5.2

Quality of Content Validity

Content validity was the psychometric property with the least evidence as demonstrated in a psychometric study on social inclusion (Cordier et al. 2017). In terms of

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quality of psychometric properties, “indeterminate” was the most common rating due to inadequate reporting. Methodological weaknesses included not reporting on estimates of variance for structural validity, inadequate sample sizes, and weak and/or statistically insignificant correlations for hypotheses testing. Most disconcerting was poor methodological quality for content validity. Just over half the measures (13 of 25) did not conduct and/or report on any development and content validity studies. Specifically, descriptions of measurement aims, target populations, concepts measured, and means of item selection estimates were unclear or absent from studies reporting on content validity. Furthermore, studies did not involve the target population in developing the measures to give feedback on the relevance, comprehensiveness, and comprehensibility of the items.

5.3

Thematic Analysis to Establish the Domains of Social Inclusion

Thematic analysis of 25 measures of social inclusion from development and validation studies identified three domains of social inclusion to include participation, connectedness and a sense of belonging, and citizenship. All three domains contain sub-domains, which were categorized following a thematic synthesis of the scales and subscales in the measures and, where available, definitions or descriptions of the scales and/or subscales. Based on the thematic analysis the following sub-domains were identified and subsumed under the most relevant domain: (1) the sub-domains of economic, social, and spiritual were subsumed within the domain of participation, (2) the sub-domains of having a sense of connectedness to family, friends, neighbors, broader community were subsumed within the domain of connectedness and a sense of belonging, and (3) the sub-domains of political, demonstrating altruism, and general community engagement were subsumed within the domain of citizenship. The domains were used to analyze the identified instruments in relation to how comprehensively they assess the construct of social inclusion. Analysis revealed that participation was measured by 19 instruments, connectedness and a sense of belonging by 21, and aspects of citizenship were measured by 14. Ten measures included aspects of all three domains of social inclusion, but no single instrument measured all sub-domains of participation, connectedness and a sense of belonging, and citizenship. Figure 2 provides a schematic representation of the domains and sub-domains, and Fig. 3 illustrates the mapping of the 25 measures against the domains and sub-domains of social inclusion.

5.3.1 Domain of Participation Given that vulnerable populations are often marginalized and have reduced opportunities to participate in society (Chang et al. 2016), participation has previously been identified as an important predictor of social inclusion (Cobigo et al. 2012). The three sub-domains of economic, social, and spiritual participation were

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Fig. 2 Domains and sub domains of social inclusion

identified as being consistent with how individuals contribute to and participate in their community. The sub-domain of economic participation included employment, selfemployment enterprise development, education, and training (McClure 2000). Even though 7 out of the 25 identified measures included the sub-domain of economic participation, there were variability in how work and paid employment were defined across measures. Some of the definitions of employment was restrictive, by viewing paid employment as the primary gateway to participation in society (Wright and Stickley 2013). This points to the need for developers of measures to adopt a broader perspective of a person’s contribution, participation, and belonging (Salzer et al. 2014). From this perspective, facilitating participation to enhance social inclusion requires more than simply enabling people to enter paid employment. Seventeen of the 25 identified measures included the sub-domain of social participation which is nuanced and extends beyond simple engagement in daily activities (Mars et al. 2009). Social participation includes participation in formal community organizations, informal community networks and activities, volunteer work, and caring at the level of the individual (McClure 2000). At a societal level, it involves empowering communities to retain ultimate control over the key decisions that affect their well-being (World Health Organization 2008). Low social participation may be a pathway associated with deprivation and poor health, and reduced

Economic

Social

Participation Spiritual

Neighbors

Broader community

Political

Community Access to CS engagement

Citizenship Altruism

Fig. 3 Mapping measures of social inclusion against domains. * Mental health day services and social inclusion questionnaire. CS, community services

Friends

Connectedness and a Sense of Belonging Family

Note: *Mental health day services and social inclusion questionnaire; CS = community services

Unnamed (Lloyd, Waghorn, Best, & Gemmell, 2008)

The Inclusion Web (Hacking & Bates, 2008)

SPQ (Densley, Davidson, & Gunn, 2013)

SIS (Wilson & Secker, 2015)

SInQUE (Mezey et al., 2013)

SIT-Instrument (De Greef, Segers, & Verté, 2010)

Social Connectedness Scale–R (Lee, Draper, & Lee, 2001)

Social Connectedness Scale (Lee & Robbins, 1995)

Social Capital Scale (Looman, 2006)

SCQ-R (O’Brien, 1989)

SCQ (Onyx & Bullen, 2000)

SCCS (Magson, Craven, & Bodkin-Andrews, 2014)

SCOPE Short (Huxley et al., 2012)

SCOPE Long (Huxley et al., 2012)

SCI (Stevens et al., 2011)

PSC ( Jason, Stevens, & Ram, 2015)

PSCS-E (Archuleta & Miller, 2011)

MHDSSIQ* (Marino-Francis & Worrall-Davies, 2010)

ISCS (Williams, 2006)

GCPLA (Baker, 2000)

CPDM (Chang et al., 2016)

BSCS (Peterson, Speer, & McMillan, 2008)

Bonding Social Capital (Brisson & Usher, 2007)

ACPQ (Berry, Rodgers, & Dear, 2007)

APQ (Stewart et al., 2010)

Measures

Domains

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social support and anchorage are often negatively associated with poor mental health outcomes (Araya et al. 2006). The sub-domain of spiritual participation relates to participation in groups and activities with others who share beliefs and similar patterns of worship. Only 2 of the 25 identified measures incorporated spirituality in the measures. As such, even though widely practiced across the world, spiritual participation appears to be an under-recognized aspect of social inclusion.

5.3.2 Domain of Connectedness and a Sense of Belonging The domain of connectedness and a sense of belonging relates to relationships within a range of configurations and groups and associated feelings of emotional attachment (Taket et al. 2009). Connectedness refers to social norms within a group (i.e., family or friendships) that may provide strong motivation to remain connected (Crisp 2010; Evans and Kelley 2004). In turn, belonging adds an emotional aspect to the construct, as it is possible to be connected but not emotionally attach (Baumeister and Leary 1995). Therefore, true social inclusion needs to combine both being connected and having a sense of belonging. At the level of the individual, the family, friends, neighbors sub-domains involve interpersonal integration through diverse social networks (e.g., family, friends, neighbors, community groups) to provide care and companionship and moral support; Huxley et al. 2012). At the level of society, the sub-domain of broader community involved being part of community groups or organizations as a way of increasing a sense of connection and belonging in a complex and fragmented society (Lynch 2007). Twenty-one out of the 25 identified measures included the sub-domain of broader community connectedness and sense of belonging, 9 included the sub-domain of family, 12 included the sub-domain of friends, and 9 included the sub-domain of neighbors. 5.3.3 Domain of Citizenship The domain of citizenship extends beyond participation and belonging within family, friends, and other social networks. Citizenship entails the rights and obligations associated with being a member of a community, whereby the “extent” of citizenship is determined by the rules and norms of inclusion and exclusion that a society develops to define the boundaries of membership (Isin 2009). The sub-domains of citizenship involved community engagement, political activism, and acts of altruism. The sub-domain of community engagement involves opportunities for engagement which, in turn, reduces health inequities and increases positive mental and physical health outcomes (Boardman 2003; Milton et al. 2012; Waddell and Burton 2006; Whiteford et al. 2005). Community engagement was included as a sub-domain in 11 of the 25 measures. The sub-domain of political activism reflects the notion of being able to “have a say” and opportunities to have a political voice and take political action (Thill 2015). Four of the 25 measures included the sub-domain of political activism. An inclusive society is one in which every individual has an active role in meeting their own rights

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and responsibilities (United Nations 1995). Political activism provides a conduit for individuals to influence their rights and responsibilities realized by accessing a sense of trust gained from reciprocal (Bullen and Onyx 1998). Therefore, political activism is an integral part of the construct of social inclusion. The sub-domain of acts of altruism constitutes behaviors which form an important mechanism that promote an inclusive community (Ma and Chan 2014) and highlights the value of social capital (Cobigo et al. 2012). Only three measures included the sub-domain of acts of altruism, highlighting this as an under-evaluated sub-domain within the construct of social inclusion.

6

Evaluation of the Remaining Psychometric Properties of Measures of Social Inclusion

The next step was to evaluate the remaining psychometric properties (i.e., psychometric properties other than content validity). Evaluation of reliability includes test– retest reliability (the degree of total score variance in repeated measurement on the same respondents over time), interrater reliability (the degree of total score variance in repeated measurement on the same occasions by different raters), and intra-rater reliability (the degree of total score variance in repeated measurement on different occasions by the same rater). Cross-cultural validity needs to be evaluated for measurement invariance of an instrument across culturally different groups (e.g., nationality, gender, and age). Cross-cultural validity was not undertaken for any of the measures included in this study and could therefore not be reported. Criterion validity involves exploring associations between any instrument and a gold standard, as well as between an original long version and the shortened version thereof (Mokkink et al. 2018b). Given that there is currently no measure in the field of social inclusion that is regarded as the “gold standard,” criterion validity could not be assessed. Lastly, hypothesis testing for construct validity is evaluated by appraising the associations between two instruments to determine whether they are measuring a similar construct of interest (i.e., convergent validity) and to compare differences in scores between subgroups of the target population (i.e., discriminative validity; Mokkink et al., 2018a). Responsiveness required a different search strategy and was therefore outside the scope of this study.

6.1

Methodology to Evaluate the Remaining Psychometric Properties

The three stages involved in evaluating the remaining psychometric properties are described below.

6.1.1 Stage C: Evaluation of Methodological Quality of Studies The methodological quality of the studies on the psychometric properties of the included instruments are rated using the COSMIN Risk of Bias checklist (Mokkink

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et al. 2018a), which is a standardized tool for evaluating the quality of psychometric studies. The checklist items rate the quality of study design and the robustness of statistical analyses conducted in studies on any of the seven psychometric properties evaluated in this chapter (Mokkink et al. 2018a).

6.1.2 Stage D: Evaluation of Psychometric Properties of Instruments The psychometric properties of instruments need to be assessed for each of seven psychometric properties in three consecutive steps: Step D.1 rating the result of single studies, Step D.2 summarizing the results of all studies per instrument, and Step D.3 grading the quality of evidence on psychometric properties. Rating the result of single studies (Step D.1). Rating the results of single studies is conducted for each psychometric property separately. The results of each psychometric property in each individual study needs to be rated as sufficient (above the quality criteria threshold: (+); insufficient (below the quality criteria threshold: (); or indeterminate (less robust data that do not meet the quality criteria: (?)), using the predefined criteria for good psychometric properties (Mokkink et al. 2018b). Summarizing the results of all studies per instrument (Step D.2). All results on each psychometric property from available studies per instrument need to be qualitatively summarized into overall ratings of the psychometric property per instrument (Prinsen et al. 2018). An overall sufficient (+), insufficient () inconsistent (), or indeterminate (?) rating is given for each psychometric property per instrument, with a 75% agreement rule used (Mokkink et al. 2018b): that is, for an overall sufficient (+) or insufficient () rating on a psychometric property, 75% or more of the studies reporting the psychometric property must be sufficient (+) or insufficient (); otherwise, for an overall inconsistent () rating, less than 75% of studies showed the same rating; and for overall indeterminate (?) rating, all studies must be indeterminate (?). Grading the quality of evidence on psychometric properties (Step D.3). The quality of the evidence (i.e., the total body of evidence used for overall ratings on each psychometric property of an instrument) is graded as high, moderate, low, or very low using a modified Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach (Prinsen et al. 2018). The following four factors are considered in determining the ratings: (a) risk of bias (limitations in the methodological quality of studies: Stage C; (b) inconsistency (unexplained heterogeneity in results of studies: Step D.2; (c) indirectness (evidence from different populations than the targeted population in the review); and (d) imprecision (a low total number of samples included in the studies; Mokkink et al., 2018b). Further details on grading quality of evidence can be found in the COSMIN usual manual for systematic reviews of instruments (Mokkink et al. 2018b). 6.1.3 Stage E: Selection of Instruments The selection of instruments and recommendation of suitable instruments for future use is based on combining overall rating results of each psychometric property (Step D.2) and grading results of evidence quality for each property (Step D.3; Prinsen et al. 2018). The recommendation is based on both findings of content validity and

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other psychometric properties of included instruments. Each instrument is classified into three recommendation categories (Mokkink et al. 2018b): (i) most suitable (i.e., instruments with high-quality evidence for sufficient content validity – in any aspects of relevance, comprehensiveness, and comprehensibility – and at least low-quality evidence for sufficient internal consistency); (ii) promising but need further validation studies (i.e., instruments categorized not in i or iii); and (iii) not recommendable (i.e., instruments with high-quality evidence for an insufficient psychometric property).

6.2

Quality of Remaining Psychometric Properties of Measures of Social Inclusion

The findings of the psychometric quality of social inclusion measures paint a concerning picture. From a psychometric point of view, the 25 measures identified are in their infancy. For 24 of the measures, only single studies were found to report on one or more of the psychometric properties within the scope of this review. Only the SIS (Wilson and Secker 2015) conducted two psychometric studies. Moreover, most studies only evaluated a few psychometric properties, ranging between one and five of the nine psychometric properties (average 3). Nearly half of the measures had an indeterminant overall rating. Missing data on psychometric properties have an impact on the generalizability and interpretation of results. These findings suggest that studies that utilized these measures of social inclusion to determine outcomes should be interpreted with caution. Most of the measures evaluated the domain of reliability (20 of 25), with internal consistency as the most frequently reported psychometric property. Only six measures produced Cronbach’s alphas in the acceptable range. The main methodological weakness in evaluating internal consistency was inadequate sample size in relation the number of items contained within each measure. This notion is substantiated by the finding that internal consistency results were usually positive for those measures being validated with adequate sample sizes. The overall quality scores for internal consistency, reliability, and measurement error were mostly indeterminate due to poor methodological quality. Examples of problems with methodological quality includes using Pearson’s or Spearman’s correlations rather than Kappa or ICCs to report on evaluations of test-retest reliability. Similar to findings of reliability, most measures evaluated at least one psychometric property of the validity domain. Structural validity was the most commonly reported psychometric property within the domain of validity, followed by hypothesis testing. When considering the quality of psychometric properties of individual measures, the Social Connectedness Scale (Lee and Robbins 1995) and the SCOPE Short (Huxley et al. 2012) were most promising measures. Strong positive psychometric evidence was reported for the Social Connectedness Scale on internal consistency, content validity, and structural validity, and indeterminate evidence for reliability. Strong positive evidence was found for reliability, moderate positive evidence for content validity, and hypotheses testing and indeterminate ratings for

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internal consistency and structural validity for the SCOPE-Short. The SIS (Wilson and Secker 2015) reported strong and moderate positive evidence for hypotheses testing and internal consistency and an indeterminate rating for reliability. In terms of the measure with the strongest evidence of weak psychometric properties are the BSCS (Peterson et al. 2008), CPDM (Chang et al. 2016), SCI (Stevens et al. 2011), and SinQUE (Mezey et al. 2013) which showed only indeterminate negative psychometric ratings. The overall pattern was that measures had missing data or indeterminate ratings, indicating an urgent need for further research to determine the psychometric properties of these measures. When findings on how well the measures cover the construct of social inclusion are integrated from a theoretical perspective (content validity), along with the quality of the remaining psychometric properties, the SCOPE Short (Huxley et al. 2012) has shown itself to be the most promising measure of social inclusion (covering 7 out of 11 sub-domains), followed by the SIS (Wilson and Secker 2015), covering 5 out of 11 sub-domains. While the quality of the psychometric properties of the Social Connectedness Scale (Lee and Robbins 1995) shows promise, it is narrow in its measurement of the construct of social inclusion. Overall, the findings highlight the need for more research to fully capture the complex construct of social inclusion and to validate the measures using sound psychometric methodologies.

7

Conclusion and Future Directions

This chapter highlighted how the construct of social inclusion, while widely applied and referenced in both social policy and health and human service delivery, is poorly conceptualized when it comes to the measurement of outcome and impact. The importance of following a rigorous process to assess the psychometric properties of validity, reliability, and responsiveness within instruments claiming to measure social inclusion is emphasized. Further, the chapter highlights the significance of definitional clarity to operationalize socially inclusive policies and practices. This highlights the importance of future research which fully captures and clearly defines the complex construct of social inclusion and includes measures which incorporate sound psychometric methodologies. There is a need for further consideration of instrument design when attempting to measure social inclusion. Nearly all identified instruments were self-report measures. While there are advantages to using self-report measures, a disadvantage is the potential for inaccurate reporting due to respondent misinterpreting the items. Similarly, some of the measures used Likert scales in combination with dichotomous and nominal scales. Deciding on a scale and response format requires attention to the meaning of the terms, the exact wording, as well as the context. Researchers need to utilize more robust methodology when evaluating and reporting on psychometrics, particularly in relation to the collection of adequately sized samples and the selection of statistical tests. Flaws in methodology will reduced the ability of researchers to draw conclusions about results. There is also a need for more complete reporting of instrument purpose, concepts assessed, target

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populations, and selection of items. Without this knowledge, there is a risk of clinicians, researchers, and policy developers making inappropriate instrument selections for social inclusion. All but one of the identified measures (SSCS; Magson et al. 2014) were developed and validated with adults only. Moreover, the most frequently sampled population for the development and validation of the social inclusion measures was adults diagnosed with mental health problems. Further validation of instruments for general populations as well as those at risk of social exclusion would allow researchers and policy makers to evaluate the impact of social policies and specific interventions for population subgroups as well as the broader population.

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Mixed Methods Research and Social Inclusion

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Defining Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Defining Mixed Methods Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 MMR: Advancing Contemporary Aims of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . 2 Mixed Methods Research as Socially Inclusive Inquiry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Mental Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Remedies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Approaches to Socially Inclusive MMR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Convergent Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Explanatory Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Exploratory Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Intervention Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Participatory Justice Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Recommendations on Undertaking Socially Inclusive MMR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Positioning the Self . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Partnerships in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Mixed methods research (MMR) has emerged in the last several decades as a genus of inquiry that systematically connects and integrates quantitative and qualitative methods. Combining the breadth offered by quantitative research C. Meixner (*) Department of Graduate Psychology, Center for Faculty Innovation, James Madison University, Harrisonburg, VA, USA e mail: [email protected] D. J. Spitzner Department of Statistics, University of Virginia, Charlottesville, VA, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_19

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with the depth engendered from qualitative inquiry, the diffuse and crossdisciplinary phenomenon of social inclusion can be understood, explored, and applied toward change efforts. This chapter explores MMR as a means and ends to socially inclusive inquiry, drawing ties to the broader discourse on inclusive, decolonizing research. MMR is discussed in the context of looming conversations on philosophical positions (e.g., post-positivism, constructivism, transformative, and pragmatism). From there, the reader is oriented to major approaches to MMR, each contextualized by examples of research on social inclusion conducted through a mixed methods trajectory. The chapter concludes with recommendations on how to get started in MMR. Keywords

Mixed Methods Research · Social Inclusion · Inclusive Research

1

Introduction

This chapter introduces students, researchers, and practitioners to mixed methods research (MMR) as a means of planning, conducting, and disseminating social inclusion inquiry that advances change efforts. Intentionally and systematically bridging the depth of the qualitative milieu with the breadth of quantitative research, studies applying MMR invite novel understanding and exploration of social inclusion – a diffuse, cross-disciplinary, and boundary-spanning phenomenon. To situate MMR as inquiry that advances the process and aims of both inclusive research and social inclusion, broader discourses across the disciplines are highlighted. The journey begins with a primer on social inclusion, which is followed by an orientation to MMR. From there, MMR is conceptualized as a formulation of inclusive, decolonizing research. Herein, attention is offered to reconciling the oft touted gaps between quantitative and qualitative research, and attending to broader epistemic, ontological, and axiological considerations. Then, major approaches to MMR (i.e., convergent parallel, exploratory, explanatory, and intervention) are presented, each contextualized by globally and disciplinarily diverse examples of MMR on social inclusion. The chapter concludes with concrete recommendations on how readers might plan for their own mixed methods studies on social inclusion.

1.1

Defining Social Inclusion

Social inclusion is a vast, global, and transdisciplinary phenomenon – one that could be understood as pertaining to the individual, the interpersonal, the group, the community, and the society. Tua and Banerjee (2019, p. 109) succinctly defined the construct as “the level of community participation and interpersonal relationships that people experience, as individuals and as groups.” Koikkalainen 2011, p. 2), presenting a historical portrait of social inclusion, underscored its synonymous nature with “. . .very general notions such as unity, cohesion, civic engagement,

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togetherness, or bridging the gap between ‘us’ and ‘the other.’” Related are varied theories of government, public policies, third sector organizations, and other mechanisms erected to advance social inclusion on local, national, and global scales (Allman 2013; Koikkalainen 2011). The immense nature of social inclusion as a field of inquiry may render it difficult to explore, which prompted Simplican et al. (2015) to craft an ecological model premised upon the interaction between two life domains: interpersonal relationships and community participation. By way of an example, Simplican et al. (2015, p. 22) deftly clarified the aims of social inclusion as it pertains to persons with disability: So, who is social inclusion for? Social inclusion is for all of us: an individual with an intellectual or developmental disability; for people with intellectual and developmental disabilities as a group; for members of society who will benefit from their inclusion; and for nation states who can benefit from the participation of people with all levels of abilities.

To fathom social inclusion is also to explore its antagonist: social exclusion. Creating a space within which all are included diminishes the capacity, power, and reach of what Allman (2013) described as exclusion hierarchies, natural orders, ostracism, solidarism, and stigmatism. Undoubtedly, social exclusion presents a dubious and multifarious enigma given the propagation, both explicit and overt, of prejudice, political control, and scapegoating, among reprehensible others. Further, cultures and societies range widely in their own sociohistorical conceptions of inclusion and exclusion, i.e., “how they account for customs around inclusion, exclusion, belonging, and togetherness; how the processes that include and exclude are talked about, described, understood, and experiences, all provide some clues as to the role of social integration and stratification” (Allman 2013, p. 6). Opportunities to explore, critique, understand, reconceptualize, and evoke change around issues of inclusion and exclusion are interminable. Allman (2013) called for inquiry into the subjective, inner experiences – how inclusion and exclusion are experienced, produced, and reproduced socially. Simplican et al. (2015, p. 28) recommended research premised on action – “designing and promoting interventions that can increase the quantity and quality of social inclusion.” Adding to this, Na and Hample (2016), who examined the impact of social integration on health outcomes, invited further research tied to public policy. These and other recommendations situate MMR as a nimble, action-oriented inquiry pathway.

1.2

Defining Mixed Methods Research

Mixed methods research invites us to explore and explain phenomenon that may not be understood by one method – quantitative or qualitative – on its own. More integrally, MMR contains an array of tools enabling the inquirer to thoughtfully integrate quantitative and qualitative findings such that they are not rendered separate, but are appreciated holistically in the context of the phenomenon under investigation. In this way, MMR stands as much more than cobbling quantitative findings with qualitative insights. Rather, MMR beckons researchers to formulate a

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Gestalt – with quantitative and qualitative data emanating from the ground, and with their integrative outcomes comprising an inclusive figure. To understand MMR is also to appreciate what it is not. Creswell (2015) foregrounds six related tenets: (1) MMR is, as noted above, more than the stitching together of quantitative and qualitative data, as the method relies on careful and deliberate integration; (2) MMR is also not a label to be haphazardly applied to research studies; (3) MMR and mixed model approaches differ, with the latter pointing toward formulations of statistical, quantitative research; (4) MMR is not just to be used for evaluative purposes, yet evaluation is among many potential uses; (5) MMR should not be confused with only using qualitative data to augment quantitative findings, though one of many models (see Sect. 3.3) draws power from this technique; and (6) MMR cannot solely involve multiple qualitative methods, just as it cannot rely singularly on collecting varied forms of quantitative data. The power of MMR, thus, exists in its thoughtful, systematic approach to collecting, analyzing, and integrating qualitative and quantitative data. Teddlie and Tashakkori (2009) underscored the value of making meta-inferences – conclusions that arrive not from quantitative or qualitative findings on their own, but through analytical integration. The benefits are immense, as integrating methods in a study “. . .can help researchers exclude or minimize potential alternative explanations of the results, which at the same time provide enough information to explain the divergent aspects of the studied phenomenon” (Plano Clark and Ivankova 2016, p. 9).

1.3

MMR: Advancing Contemporary Aims of Social Inclusion

At the time of writing this chapter, the hearts of humankind ache, suffer, and strive for healing in the wake of ongoing racial divisiveness, stark partisanship, and a global pandemic. The novel coronavirus has been an arch nemesis in a war-like sabotage: humankind against a haughty, young, crown-shaped viral agent that wreaks disproportionate havoc upon marginalized groups. Optimists hope that the pandemic may eventually whisper a swan song heralding a new, socially inclusive future for humanity. Each facet within which social inclusion and social exclusion are manifest amid current circumstances – sociological, psychological, economic, political, and more – may be met with opportunities necessitating inclusive research. Consider, for instance, the dire effects of global job loss on stigma, mental health, housing security, public policy, and beyond. Actionable pathways to deliberate, focused, and person-centered research – the kind offered by inclusive MMR – are essential to cultivate in order to inspire transformative justice. It is without hyperbole to state that the universe will remain forever changed. To return to the old “normal” would be to obfuscate and erase a phenomenon that cries for new understandings of social inclusion. As social scientists, there exists no better time than now to explore, unpack, interrogate, critique, and make meanings of social inclusion as manifest in COVID-19’s anomalous aftermath. Described throughout this chapter, MMR’s sundry, flexible toolkit provides the mechanisms to explain numerical patterns – across disciplines, continents, and languages – drawing from

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the power of nuanced, complementary narratives. MMR allows inquirers to explore diffuse, ineffable facets of the human and social response to COVID-19, tying together numbers and stories. Through MMR, scholars can concurrently engage big data with visual, written, and artistic renderings. And MMR can interrogate the effects of the very interventions – from development of a vaccine to facilitation of grief groups – surrounding global crisis.

2

Mixed Methods Research as Socially Inclusive Inquiry

The richness and holistic character of MMR equips it to synchronize with the perspectives of socially inclusive research, and to meet its challenges, which can require a broad, encompassing view and the careful coordination of knowledge at multiple levels, such as under the ecological approach developed in Simplican et al. (2015). It is made especially compatible by its incorporation of qualitative methodologies and their supporting philosophies. Nevertheless, the suitability and success of mixed methods for socially inclusive research can depend on the degree to which it is able to attain its holistic potential by integrating its qualitative and quantitative components. The debate over this topic, the integration of qualitative and quantitative methodologies, is substantial; it probes the contours of conflict between such methodologies, and identifies challenges to combining them in a manner that extends beyond merely stitching pieces together. The entry point to this aspect of MMR is through the concept of a mental model, which will lay the groundwork for subsequent discussion of integration.

2.1

Mental Models

The term “mental model” arises in debates around foundational paradigms and their role in guiding research. Greene (2007, p. 53) defines a mental model as a “set of assumptions, understandings, predispositions, and values and beliefs” that would inform decisions that are made during the course of inquiry. Smith (1997) points to early use of the concept in symbolic interactionism (cf. Blumer 1969), referring to the principle that “action is impossible unless the one has constructed a mental model, image, or definition of the situation” (Smith 1997, p. 73). Meixner and Hathcoat (2019, p. 61) write of how a researcher’s inattention to their own mental model, can “endanger various facets of [a] research design, most especially the interpretation phase.” Further clarification is provided in the National Science Foundation’s User Friendly Guide to Mixed Method Evaluations (NSF 1997). It alludes to distinctions between mental models (although it does not use that term), and the importance of recognizing them. The following statement appearing in the guidebook offers a rough characterization of the quantitative mental model: “. . .while quantitative researchers no longer believe that their research methods yield absolute and objective truth, they continue to adhere to the scientific model and seek to develop

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increasingly sophisticated techniques and statistical tools to improve the measurement of social phenomena” (▶ Chap. 1, “Social Inclusion, Research, and Practices in the Health and Social Sciences”). As for a qualitative mental model, a rough characterization provided in the guidebook is that its associated research approach “emphasizes the importance of understanding the context in which events and outcomes occur” (▶ Chap. 1, “Social Inclusion, Research, and Practices in the Health and Social Sciences”). Similarly, Smith (1997, pp. 76–77) describes a qualitative mental model such that “contextualized social processes are just as important to explain as structural variables are.” The NSF handbook is blunt in stating that the philosophical distinction between quantitative and qualitative approaches “affects the nature of research designs” (▶ Chap. 1, “Social Inclusion, Research, and Practices in the Health and Social Sciences”). A study by Smythe (2005) on the “thinking of research” identifies a range of potential influences on a researcher’s adherence to a mental model. Through interviews with experienced researchers from a variety of backgrounds, Smythe’s study (2005, p. 242) uncovers that thinking about how aspects of research such as method selection is “shaped by past experiences, epiphanies, embodied understanding, and many complex and nuanced insights as well as the nature of the phenomenon to be studied.” These ideas are related to distinct foundational paradigms, or worldviews, which may guide researchers at the deepest levels. Mertens (2003) succinctly describes three widespread and influential paradigms, the positivist-postpositivist, the interpretive-constructivist, and the transformative-emancipatory, along with central aspects of their associated ontologies (i.e., perspectives on nature) and epistemologies (i.e., perspectives on knowing), as indicated in Table 1. Note that Giddings (2006, p. 199) extends the list in Table 1 of qualitative approaches associated with the interpretive-constructivist paradigm: she asserts that the descriptor “qualitative inquiry” joins together multiple rich traditions, including those of “ethnographers, grounded theorists, phenomenologists, hermeneutists, feminists and so on.” Similarly, Creswell (2014, p. 12) discusses these three paradigms associated with MMR, and adds as a fourth paradigm, the pragmatist position. This position downplays issues of ontology and epistemology in favor of granting the inquirer freedom “to choose the methods, techniques, and procedures of research that best meet their needs and purposes.” Hathcoat and Meixner (2017) note that the pragmatist stance can often take the form of a “what-works maxim,” a form that emphasizes expediency and has tended to be unhelpful for informing substantial decision-making during the research process; they contribute a “conditional incompatibility thesis” to assist researchers in moving beyond that form. Discussion appearing in Sect. 2.2, below, points to a strong and complicating influence of the pragmatist stance on MMR practice. Smith (1997, pp. 76–77) sheds further light on mental models, as well as methods and objectives of research. She indicates that qualitative and narrative techniques are valued for their ability to “build explanations” about social processes, the use of which can require an inquirer to get so close to a process that they become a

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Table 1 Descriptions, ontologies, and epistemologies of three widespread and influential para digms, according to Mertens (2003, emphasis added) Paradigm The positivist postpositivist paradigm is associated with traditional research approaches such as experimental or quasi experimental designs and causal comparative and correlational research approaches (p. 139) The interpretive constructivist paradigm is associated with many qualitative approaches to research such as ethnography, case studies, and phenomenological investigations (p. 139) The transformative paradigm is characterized as placing central importance on the lives and experiences of marginalized groups such as women, ethnic/racial minorities, members of the gay and lesbian communities, people with disabilities, and those who are poor (pp. 139 140)

Ontology . . . there is one reality one truth that can be known within a certain level of probability (p. 140)

Epistemology . . . objectivity is considered to be paramount and is thought to be achieved by observing from a somewhat distant and dispassionate standpoint (p. 141)

. . . multiple socially constructed realities (p. 140)

. . . interaction between the researcher and the participant is felt to be essential as they struggle together to make their values explicit and create the knowledge that will be the results of the study (p. 141)

. . . there are diversities of viewpoints with regard to many social realities, but. . . those viewpoints need to be placed within political, cultural, historical, and economic value systems to understand the basis for differences (p. 140)

. . . importance of an interactive link between the researcher and the participants, with sensitivity given to the impact of social and historical factors in the relationship between the researcher and the participants as well as the impact of those variables on the construction of knowledge (p. 141)

participant in it. Consistent with the epistemology of the transformativeemancipatory paradigm, especially, and also consistent with that of the interpretive-constructivist, qualitative techniques draw a connection to participatory research, a type of socially inclusive research, wherein the people being researched are “doing the research rather than just providing data for it” (Nind 2014, p. 5). In contrast, quantitative techniques traditionally follow a positivist-postpositivist perspective, and call for an attitude of detachment. The emphasis of qualitative and quantitative mental models on distinct aspects of inquiry gives rise to distinct perspectives on the goals of inquiry. Whereas quantitative techniques are typically formulated for generalizing the results of a sample to a population, many qualitative techniques are instead valued for their capacity to translate knowledge across a potentially diverse range of communities. Consider, for example, the capacity for translation of knowledge offered by auto-ethnography, a qualitative method whose use of storytelling “brings ‘felt’ news from one world to another” (Ellis 2004, p. 195). Given that translation of knowledge is itself sometimes interpreted as a form of generalization (cf. Maxwell 2020), it is evident that even

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where terminology is duplicated between qualitative and quantitative mental models, such as in asking whether results “can be generalized” (Creswell 2015, p. 40), the associated interpretations, attitudes, and goals may be very different. Moreover, some studies that proceed under a qualitative mental model eschew generalization altogether as an objective of research. As an example, England (1993, p. 227) writes that the “central purpose” of her mixed methods study of social entrapment is “not to obtain empirical generalizations; rather it is to develop an in-depth understanding” of the phenomenon she studies. In studying social capital, Hodgkin (2008, p. 299) applies a mixed methods approach to “give a more powerful voice to women’s experiences.” On the informativeness of quantitative techniques under the qualitative mental model, Smith (1997, p. 77) writes that “from data in the form of numbers, one makes inferences in the same way as with data in the form of words,. . . inference is not mechanized.” One can infer from such a statement that quantitative analysis can, under the right circumstances, be meaningful within an interpretive-constructivist or transformative-emancipatory paradigm. That is, it is ostensibly the case that qualitative and quantitative methodologies can be integrated, thereby boosting the suitability of MMR for socially inclusive research.

2.2

Integration

Creswell and Plano Clark (2018, p. 5) discuss MMR as a mode of research that “combines methods, research design, and philosophy orientation,” and offer example characterizations of MMR that stress the comprehensive nature of the intended combination. Among them, Greene (2007, p. 20) describes MMR as a form of inquiry that “actively invites [participation] in dialogue. . . multiple ways of seeing and hearing, multiple ways of making sense of the social world, and multiple standpoints on what is important and to be valued and cherished.” Johnson and Onwuegbuzie (2004, p. 17) describe it as an “expansive and creative form of research, not a limiting form of research. It is inclusive, pluralistic, and complementary,” a form that “suggests that researchers take an eclectic approach to method selection and the thinking about and conduct of research.” As indicated in these characterizations, as well as in the discussion of Sect. 2.1, above, combining qualitative and quantitative techniques in MMR involves a complex range of considerations that are not limited to the technical development of specific analysis methods, but requires reflection about the combination on practical and conceptual levels. Creswell and Plano Clark’s (2018) overview of the evolution of MMR describes an early period of debate over conflicting assumptions that arise when combining qualitative and quantitative data, whose concerns lingered through later periods during which the field was formalized through systematizing of methodologies, increased publication of articles and handbooks, and increased credibility with funding agencies. Summarizing the current state of such debate, Meixner and Hathcoat (2019) write that some scholars maintain that quantitative and qualitative research are inherently incompatible and cannot be integrated; others assert they can

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be integrated even while respecting distinctions between their differing philosophical underpinnings; and, still others allow integration under cover of a pragmatist position. As noted in Hathcoat and Meixner (2017), pragmatist claims of integration, particularly under the what-works maxim, may be superficial, and are frequently observed alongside a low degree of recognizable integration. In an investigation into potential impedances to integration, Bryman (2007, p. 17) notes that most of the participants in that study “depicted themselves as pragmatists who felt it necessary to put aside [potential philosophical incompatibility] issues to secure funding for their research interests and to publish their findings.” This observation is consistent with those of previous investigators (Greene et al. 1989; Niglas 2004), who find that MMR projects are “frequently not integrated” (Bryman 2007, p. 10). Among the impedances to integration, Bryman (2007, pp. 15–16) uncovers that “the presence of skill specialisms may lead to compartmentalization of roles and responsibilities that can hinder the integration of findings.” One participant in that study asserts that “it may not always be very easy if [people with quite different perspectives on a research team] are very good at the type of research they do, but do see themselves as particularly in one camp rather than the other.” Another participant paints the following picture: “We’ll get together a team and we’ll have a statistician and a qualitative person and somebody else and that’ll make it an. . .a mixed method thing. And of course it doesn’t – you know, it’s not that simple.” Giddings (2006, p. 200) identifies a subtle, yet influential, consequence of pragmatism in mixed methods research. Rather than offering the “best of both worlds,” as has often been claimed, she argues that MMR has contributed to “naive understanding” and a phenomenon of the “methodological talking past each other,” which has ultimately marginalized qualitative methods. “The majority of [mixed methods] studies,” she writes, “use the analytic and prescriptive style of positivism,” i.e., a style associated with traditional quantitative research. “In the main. . ., traditional positivist research language is used with a dusting of words from other paradigms.” Similar concerns are expressed in Freshwater (2007), Hesse-Biber (2010), and Howe (2011).

2.3

Remedies

As for possible remedies to lack of integration, Creswell and Plano Clark (2018, pp. 31–34) write encouragingly of “new philosophies beyond pragmatism” that would potentially underlie MMR. Among them, Mertens’s (2003) transformativeemancipatory perspective (see also Mertens 2009; Mertens and Tarsilla 2015) is highlighted; the present chapter has noted, too, its broad compatibility with aims of social inclusion. Hall and Howard (2008, p. 250) offer a “synergistic” design concept that coordinates methods so that their “combined effect is greater than the sum of their individual effects.” Hesse-Biber (2010) re-centers mixed methods practice on qualitative approaches. A similar path is followed in Spitzner (in press), who, by attending carefully to issues related to positionality (cf. Sect. 4.1, below), uproots

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traditional interpretations of quantitative analysis, and proposes the use of Bayesian statistical methods to engender consistency with a socially inclusive worldview. This approach may be particularly impactful toward alleviating the lack of integration due to skill specialisms. The use of terminology can also encourage integration in MMR by clarifying aspirations. For this, Giddings (2006, p. 202) offers the term “multimethodological co-operative inquiry” to describe “the ‘mixing’ approach which works most effectively for local and global well being.”

3

Approaches to Socially Inclusive MMR

Introduced below are major approaches to conducting MMR. As a note to the reader, classifications, models, and approaches to MMR have varied and continue to evolve. What follows are three basic designs (i.e., convergent, explanatory, and exploratory) and two advanced orientations (i.e., intervention, participatory-justice) described by contemporary scholars (e.g., Creswell 2015; Creswell and Plano Clark 2018). Consider the “point of view that no typology can capture all possible variations in designing mixed methods studies because a study design is driven by a unique research problem” (Plano Clark and Ivankova 2016, p. 126). Thus, the reader is advised to consider the major approaches as templates from which to construct alternative or hybridized approaches. Each approach contains assumptions that regard intentionality of design, timing of strands, weighting of strands, and mixing of data. Intentionality reflects the researcher’s decision as to whether a mixed methods study is fixed or emergent (Creswell and Plano Clark 2018). For example, a team of action researchers investigating social inclusion in a school for deaf and blind children may opt, from the start, to conduct a fixed study integrating qualitative and quantitative methods. Alternatively, the same inquirers might have investigated trends quantitatively, perhaps arriving at uncertain or inexplicable findings. Herein, the team may adapt an emergent approach, methodically designing a second, qualitative phase to help explain earlier findings and unveil novel insights. Inspired by the work of Creswell and Plano Clark (2018) is Meixner and Hathcoat’s (2019) heuristic on how qualitative and quantitative data are timed, weighted, and mixed (see Table 2). Each practice is defined, with relevant examples provided. Meixner and Hathcoat (2019, p. 62) stressed, however, that “the researcher’s choice regarding these practices must (1) align with the research question and (2) cohere with the fixed or emergent design of the study.” Timing, weighting, and mixing will be later explored within the context of each major approach that is discussed.

3.1

Convergent Design

Scholars utilizing a convergent design, also known as concurrent or as convergent parallel, intend to merge qualitative and quantitative results of data that were

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Table 2 Timing, Weighting, and Mixing in MMR Practice Timing

Meaning This refers to the temporal and ordinal placement of quantitative and qualitative strands. Does one precede the other, or do they happen concurrently?

Weighting

This refers to relative priority of strands. Are the qualitative and quantitative strands equally important, or does one support the other? Are both equally or differentially represented in analysis and interpretation?

Mixing

This regards the point where the researcher chooses to integrate the strands. Does mixing happen at the level of design, collection, analysis, and/or interpretation?

Example Jeremiah develops a grounded theory that explores the experiences of persons coping with lupus. If he develops an instrument based on the theory, the timing of the quantitative strand follows the qualitative one Maris designs a quantitative survey to gauge perceptions of a mental health intervention. In support of her items, she adds several open ended qualitative questions allowing participants to explain the rationale for the scores they have indicated. Herein, the quantitative strand has greater priority or emphasis In a study on crisis intervention services for sexual assault survivors, Fletcher’s team collects survey data and focus group data separately. Each is analyzed according to its research tradition, later merged into a comparison heuristic. Here, the data are mixed at the level of interpretation

Note. Reprinted from “The Nature of Mixed Methods Research”, by Meixner and Hathcoat 2019, Handbook of Research Methods in Health Social Sciences, p. 62

collected separately (e.g., through an online survey and in-person focus groups) or in tandem (e.g., through an online survey containing both qualitative and quantitative questions) (Creswell 2015; Creswell and Plano Clark 2018; Plano Clark and Ivankova 2016). Each strand of qualitative or quantitative data, usually of equal weighting, is considered separate from the other. As such, the mixing of data takes place after analysis, at the point of interpretation. Herein, various tools may be utilized to compare and integrate the data, like side-by-side comparison tables or joint displays that “array the quantitative results against the qualitative results in a table or graph” (Creswell 2015, p. 36). The convergent design is especially useful for corroborating and confirming findings, though researchers must remain open to the possibility of reconciling discordant or incongruous data – which still eventuates in a richer, more robust understanding of the topic under inquiry (Wagner et al. 2012). A particular advantage of the convergent design “. . .is that it can produce wellvalidated and substantiated findings” (Plano Clark and Ivankova 2016, p. 120). An array of studies on social inclusion feature the convergent design. By way of example, this manuscript showcases two very different studies, each lending value to the conceptualization of social inclusion and MMR. The first, by Ashley et al. (2019), investigated social inclusion for persons with intellectual disabilities who are living independently, in supported living contexts, in Australia. Two strands of data were collected separately: (1) qualitative interviews and (2) quantitative ratings, using an instrument with strong psychometric properties, of participants’

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environments. Ashley et al. (2019, p. 699) then compared and contrasted their results, post-analysis, to formulate “the development of a better understanding than possible using either approach alone.” Investigating social inclusion through an entirely different lens – that of palliative care – was a course of action undertaken by German research team Heckel et al. (2020). Specifically, they sought to explore adult patients’ perspectives on multidrugresistant bacterial microorganisms and end-of-life hygiene measures. Of note, the study was dominantly qualitative, with data gathered via interviews and focus groups in accord with grounded theory methodology (Heckel et al. 2020). Invaluable quantitative data were also captured within the context of these interviews; the researchers asked participants to respond to six questions evaluating quality of life (i.e., on a scale of 0: very poor, to 10: ideal). Heckel et al. (2020, p. 220) reflected thoughtfully on the philosophical worth of the method employed: “From a pragmatism- and constructivism-based epistemic approach, the mixed-methods design was judged to best fit the research questions. The complementary strengths and weaknesses of the different methods are met by the convergent parallel design.”

3.2

Explanatory Design

The explanatory design is sequential, beginning with a quantitative phase that is followed by a second, qualitative stage (Creswell 2015; Creswell and Plano Clark 2018; Plano Clark and Ivankova 2016). Unlike the convergent design, which is always fixed in nature, this design is adaptable – it may be fixed, or it may be emergent, “precipitated by curious or unexpected quantitative findings that bear further exploration” (Meixner and Hathcoat 2019, p. 63). Either way, the data from the first, quantitative phase are collected, analyzed, and interpreted before the second phase begins; in this regard, the qualitative strand is generally designed to explain, augment, or support quantitative findings (Creswell and Plano Clark 2018; Plano Clark and Ivankova 2016). What follows are two variants of the explanatory design, one utilized to explore stigma among mental health service users in the USA (Lincoln et al. 2017) and the other designed to validate the Dutch version of an instrument that measures social exclusion (van Bergen et al. 2019). In both cases, the quantitative strands were weighted heavily, with qualitative data collected for support or explanatory purposes. Lincoln et al. (2017, p. 124) aimed to better understand the phenomenon of “double stigma” – in this case, limited literacy and mental illness – and did so by utilizing a battery of measures to “capture the multidimensionality of the stigma concept and experience.” After the data were analyzed, the team conducted interviews to better understand how individuals who use public mental health services experience, manage, and recover from the effects of stigma (Lincoln et al. 2017). Notably, interview questions “drew on preliminary analyses of the quantitative data, which suggested that consciousness of mental illness stigma and concealment of stigma related to mental health and literacy were dominant experiences” (p. 127). The results of the study are reported in both separate and integrative ways,

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culminating in an understanding of multiple stigmas that extends beyond predictive models into how individuals “make sense of and negotiate these multiple stigmatized statuses” (p. 138). The Social Exclusion Index for Health Surveys (SEI-HS; van Bergen et al. 2017) was designed to measure four dimensions of social exclusion (i.e., lack of social participation, material deprivation, insufficient access to social rights, lack of integration). Though validated for adults in the Netherlands, the SEI-HS “was not validated specifically for immigrant groups” (van Bergen et al. 2019, p. 2). Quantitative results of the SEI-HS, however, revealed social exclusion in non-Western immigrant groups, which the researchers sought to qualify through an emergent qualitative phase. Thus, the study’s aims appeared twofold: primarily, to validate an instrument and secondarily, to explain high incidences of social exclusion among immigrants in the Netherlands. As is common in the explanatory design, data were collected and analyzed separately. Whereas data from the quantitative strand influenced what transpired in the qualitative strand, those data emanating from the second phase offered explanatory power to the first. Critically, the qualitative phase also offered insight into the SEI-HS’s methodological shortcomings, like complicated sentence structures, item interpretation, and possible cultural biases. van Bergen et al. (2019, p. 11) remarked: “A strong point of our study is the use of a sequential explanatory mixed methods design for validation purposes. This approach is not common.”

3.3

Exploratory Design

With the exploratory design, researchers begin with a qualitative phase, often utilizing their results to build an instrument or intervention to test a concept quantitatively (Creswell 2015; Creswell and Plano Clark 2018). Thus, a first qualitative phase is often followed by two quantitative phases, such as: (1) instrument development and (2) deployment of the instrument to measure a construct quantitatively. If a measure already exists, though less common, a qualitative phase may be followed directly by one that is quantitative. Examples of social inclusion research applying the exploratory design are difficult to find, in part due to the complex and time-consuming nature of this fixed or emergent approach. Further, Creswell (2015, p. 40) articulated the inherent challenge of the design, extant in “the difficulty in taking qualitative results and turning them into a new variable, a new instrument, or a new set of intervention activities.” As with other designs, the intent of the study influences the relative weighting of the qualitative and quantitative portions. Theory development is heavily contingent upon qualitative data, which are weighted accordingly; developing an assessment or instrument may hinge more favorably on the part of the quantitative measures. Either way, integration within and across phases remains vital. Henderson and Redmond Barnes (2016) studied dimensions of social inclusion in US-based alternative learning centers (ALCs), applying an exploratory mixed methods approach. Conceptually, the authors saw ALCs as entities providing more than mere access to learning for youth who have been suspended from their schools, as ALCs have the potential to create spaces for marginalized students to become

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active, included, and self-empowered (Henderson and Redmond 2016). The study was comprised of two phases; the first entailed the collection of qualitative data “from site visits in two centres and interviews from three levels of participants (students, ALC teachers, and assistant principals)” (p. 729). The second phase, which was quantitative, allowed for the exploration of patterns among data (e.g., demographics) that were in accord with (or divergent from) qualitative themes. Together, the integrated data – qualitative and quantitative – provided a rich understanding of the ALC experience, particularly on how ALCs promote social inclusion and where students experience barriers (Henderson and Redmond 2016). Consequently, this MMR design allowed the research team to “explicate dimensions of social inclusion in an underexplored school-wide intervention and demonstrate ways in which these settings reengage students back into traditional school learning environments” (p. 728).

3.4

Intervention Design

Creswell and Plano Clark (2018, p. 104) detailed four prominent genres of “complex” mixed methods approaches, among them the intervention (or experimental) design. In this approach, “the researcher collects and analyzes both quantitative and qualitative data and integrates the information within an experiment or intervention trial.” Meixner and Hathcoat (2019, p. 65) offered this example: Let us imagine that we are testing a new therapy designed to help individuals diagnosed with panic disorder. Participants are randomly assigned to three groups: new intervention, status quo therapeutic intervention, and no intervention. Pre and post measures consist of a battery of items drawn from psychometrically robust instruments. As the reader might imagine, a design of this nature has its limitations, among them the rival hypothesis about causal processes leading to the results. Qualitative inquiry may yield valuable insights, allowing for a clearer picture of participants’ therapeutic experiences.

Inherently flexible, the intervention design invites the collection of qualitative data where doing so best responds to the research question or inquiry process. This might entail something akin to the exploratory design, wherein qualitative data are collected before the intervention starts. Qualitative data might also be gathered during the intervention (i.e., convergent), or afterward to explain quantitative findings (i.e., explanatory). Vallesi et al. (2019) published the study protocol for a 3-year mixed methods randomized control trial (RCT). The study was designed to evaluate the effectiveness of an intervention aimed at (1) reducing homelessness and (2) improving outcomes for adults experiencing chronic homelessness in Melbourne, Australia. Consenting participants were assigned randomly to the control group (i.e., standard service provision) or the experimental condition (i.e., integrative case management, service coordination, transition services, and support for social, employment, and independence-related outcomes). Forecasted quantitative measures included surveys collected at seven time points across 3 years; further, semi-structured interviews with

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clients were planned for baseline, at 18 months, and at 36 months (Vallesi et al. 2019). The team also planned to hold focus groups for providers. Notably, Vallesi et al. (2019, p. 9) presented a deft plan for how integration of multiple datasets, both qualitative and quantitative, would transpire: First, [qualitative data] will be triangulated to enable researchers to gain a deeper under standing of the impacts of the J2SI intervention and to explore how the perspectives of staff and recipients align or differ. . . Secondly, within the constraints of the small qualitative sample (n 20), we will synthesise both qualitative and quantitative data to investigate with, and between group phenomena. . . Lastly, qualitative and quantitative data will be integrated and analysed across time points to comprehensively describe participant experiences in the intervention and comparison groups, respectively.

Of note, Creswell and Plano Clark (2018) described another “complex” mixed methods approach called the evaluation design, which bears similarities to the intervention variant with one main exception – the focus is on utilizing qualitative and quantitative data to develop, adapt, or evaluate the success of a program or intervention.

3.5

Participatory-Justice Design

Per Creswell and Plano Clark (2018, p. 106), the participatory-justice approach is one “in which the researcher adds a core design within a participatory and/or social justice theoretical or conceptual framework.” The participatory-justice design bears important mention in this chapter, for several reasons. One, the literature depicts this approach as one of several “complex” MMR designs (Creswell and Plano Clark 2018). The participatory-justice design is – in the context of inquiry on social inclusion – an umbrella approach, as philosophical as it is methodological. For this reason, the reader may consider the participatory-justice concept in the context of a guiding epistemological and ontological framework (versus as a stand-alone mixed methods variant). Each of the examples showcased above embraced conceptual frameworks (e.g., on social inclusion, stigma, disability) reflecting emancipatory aims and therefore may be also thought of as participatory-justice designs. The extent to which participants also served as inquirers within these studies, however, varied; this will be further explored in Sect. 4.2. It is worth noting, however, that not all studies on social inclusion may utilize participatory research processes (e.g., co-engaging research participants in facets of inquiry ranging from conceptualizing the study to making meaning of results). For social inclusion scholars undertaking participatory processes, Ivankova’s (2015) book, Mixed Methods Applications in Action Research is recommended. Ivankova agilely integrated two methodological traditions – action research and MMR – to inform community action and intervention efforts. Further, her text is written intentionally, and invitingly, to persons at all stages of research design processes, from students to experts and from community-based practitioners to academic scholars.

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Recommendations on Undertaking Socially Inclusive MMR

As researchers consider the design of socially inclusive MMR, engaging in several steps may prove helpful – both as preludes to designing the study and as recursive processes to be revisited throughout the ensuing inquiry process. Such recommendations entail the contemplation of one’s positionality (e.g., social location) and the consideration of partnerships in research.

4.1

Positioning the Self

Bentz and Shapiro (1998, p. 42) assert that inquiry is conducted by individuals with a life and a lifeworld; the latter concept, drawn from phenomenology, “is based on lived, embodied relationships located in time, place, space, history, and the natural environment.” To this, Lawrence-Lightfoot and Hoffman Davis (1997, p. 13) add that “the identity, character, and history of the researcher are obviously critical to the manner of listening, selecting, interpreting, and composing the [research].” In this way, one’s research quest is snugly tied to an awareness of self, others, and lifeworld. Further, research oft transforms the inquirer’s own identity – and, accordingly, their relationship with the broader world (Bentz and Shapiro 1998). Walmsley and Johnson (2003) underscore how integral it is for researchers to understand, acknowledge, and explore their attitudes, beliefs, and values relative to the inquiry phenomenon. The deconstruction of power subtleties, the recognition of implicit biases, and the legitimization of others’ lived experiences all constitute processes in which researchers must be willing to engage and self-criticize. And, such processes are as integral to consider in the quantitative milieu as they are to the qualitative landscape, within which researcher authenticity, reflexivity, and positioning are frequently discussed. Lawrence-Lightfoot and Hoffmann Davis (1997, p. 13) shared the following: It is, of course, true that all researchers whether working within the quantitative or qualitative methodological paradigms are selective in defining and shaping the data they collect and the interpretations that flow from their findings. Even the most scrupulously “objective” investigations reveal the hand of the researcher in shaping the inquiry. From deciding what is important to study to selecting the central questions to defining the nature and size of the sample to developing the methodological strategies, the predisposition and perspective of the researcher is crucial, and this perspective reflects not only a theoretical, disciplinary, and methodological stance, but also personal values, tastes, and style.

Positioning and reflexivity are, to Walmsley and Johnson (2003, p. 39), “easy to say. . .[but] much more difficult to do in practice.” To become more self-aware, Bentz and Shapiro (1998) convey ideas borrowed from phenomenology, hermeneutics, critical social science, and Buddhism. Central is the notion that self- and otherawareness are invaluable tools to be made transparent in the research process. Conjoined is the sense that it is “important to bracket our assumptions and look at the often unaware, deep layers. . .that underlie them” (p. 6). In this way, researchers

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are both “accepting bias – the bias of one’s situation and context – and trying to transcend it” (p. 6). Though reflexivity involves centering oneself and one’s lived experience, doing so should be an exercise in critical interrogation. As Bentz and Shapiro (1998, p. 7) deftly acknowledge, this “usually requires giving up ego or transcending self, even though it is grounded in self and requires intensified selfawareness.” Lichtman 2014, p. 27) reviews practical strategies: including a section on positionality in a research write-up and using reflection as a “quality control indicator for a particular interview.” Analyzing one’s location (e.g., emic/etic, insider/outsider) relative to the phenomenon being studied is especially pertinent in socially inclusive MMR, so as to engender focus on sustained, transformational justice. Those for whom the phenomenon is peripheral, if not altogether distant, may heed the wellknown call of the disability rights community: nothing about us without us. Smith (1999, p. 137) reminds her reader that, relative to the typical insider and outsider binary, nuances exist; in indigenous contexts, persons may be simultaneously an insider and an outsider. Even more, insiders carry their research with them at all times and “have to live with the consequences of their processes on a day-to-day basis for ever more, and so do their families and communities.” To this end, research support systems, as well as partnerships in research, can be vital.

4.2

Partnerships in Research

To embrace Nind’s (2014, p. 3) conception of inclusive research – that which “changes the dynamic between research/researchers and the people who are usually researched” – many socially inclusive methodologists reconceive of the canonical boundaries between the “researcher” and the “participant.” Smith (1999) regards doing so as an imperative, one that necessarily disrupts and decolonizes divisions between researchers and those persons being researched. Embracing the democratization of knowledge and of knowledge production, novel research partnerships may thus take shape and emerge. Some individuals involved with partnership research (Nind 2014, p. 39) “deliberately liberate themselves from constraints imposed by their identity labels” – such as researcher and participant, academic scholar and lay person, etc. Within such alliances, new terms to describe roles are unveiled: learner researchers, volunteers, and co-researchers. Surface partnerships are cautioned, however, so that partnerships neither tokenize marginalized persons nor reproduce unequal power structures (Nind 2014). Walmsley and Johnson (2003, p. 95) offer the following exemplar of an inclusive research partnership centered on disability advocacy: the research question is owned by persons with disability, those persons’ interests are furthered, those persons are involved in the “doing of the work” with shared control over outcomes, and the outputs are accessible to those for whom the research stands to benefit (i.e., participants and the broader disability community).

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Conclusions and Future Directions

MMR is a methodology with the breadth and flexibility to meet the aims of socially inclusive research. As this chapter highlights, socially inclusive research attends to the individual, the interpersonal, the group, the community, and the society, while MMR offers a framework for integrating varied methodological elements that are applied to investigations of multilayered phenomena. As socially inclusive inquiry, MMR is supported by guidance for achieving integration that avoids vacuous forms of pragmatism, in favor of “new philosophies” that align well with the perspectives of social inclusion and encourage synergistic dialogue between qualitative and quantitative mental models. MMR is further equipped with a well-developed taxonomy and typography, which brings to the practitioner a rich, flexible toolbox with which to assemble, manage, and discuss designs that reflect the methodology’s “expansive and creative” character. For those interested in undertaking socially inclusive MMR, this chapter emphasizes the importance of a researcher contemplating and attending to the position of themself in relation to the phenomenon they study and their partners in the investigation. While underscoring the promise of MMR for socially inclusive research, this chapter also points to ongoing challenges. The influence of pragmatism has admitted a simplistic conception of MMR as a mere stitching together of techniques, which has been widely embraced. Though Hathcoat and Meixner (2017) identify certain forms of pragmatism that may offer conceptual support for methodological pluralism, the overall impact of the pragmatist perspective on MMR has been to water down its potential as a synergistic framework, especially within the mode of socially inclusive research. Further, an ongoing challenge is the barrier to decolonization that results from separation between the researcher and other stakeholders of inquiry. Continued efforts to understand and promote appreciation of power relationships within partnerships will enable a fuller fruition of socially inclusive research.

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Arts MMR: Context, Development, and Potential . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Arts MMR Integration for Social Inclusion and Transformative Research . . . . . . . . . . . . . . . . 4 Inclusive Research and Arts MMR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Broadening Inclusion Beyond Epistemological Concerns . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Power and the Chain of Influence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Over the past 50 years, the field of mixed methods research has undergone considerable development and expansion. While there have been concurrent advances and applications of arts-based research, there has been comparably little development at the intersection of these methodologies. However, the diverse fields of arts-based research and mixed methods research reflect similar underlying values pertaining to the strengths of integrating multiple ways of knowing, and a recent conceptualization of arts-mixed methods research has been offered in the literature. The argument made in this chapter is that this methodological merger has potential to foster socially inclusive research with real life impacts. Building off of this conceptualization, in this chapter, the author discusses artsmixed methods research as a unique research approach with marked suitability for socially inclusive research. The author describes alignments between an artsmixed methods research approach and the transformative mixed methods paradigm and draws attention to considerations of inclusive research. The author then explores the current emphasis on the epistemological gains of arts and how more M. M. Archibald (*) College of Nursing, University of Manitoba, Winnipeg, MB, Canada Caring Futures Institute, Flinders University, Bedford Park, Australia e mail: [email protected]; mandy.archibald@flinders.edu.au © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_20

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tacit and embodied perspectives can be of benefit to an arts-mixed methods conceptualization in the context of socially inclusive research. The author concludes the chapter with a discussion of power in relation to arts-mixed methods and research practices for social inclusion more generally, postulating a chain of influence between the appropriateness of research methods and the downstream impact of these methods on social inclusion. Keywords

Arts-based research · Arts-MMR · Mixed methods research · Social inclusion · Transformative · Inclusive research

1

Introduction

Like so many areas of interest to the social and health sciences, the concept of social inclusion carries with it a degree of diversity and ambiguity. Here, social inclusion refers to the interactive process that takes place between the domains of interpersonal relationship and community participation (Simplican 2020). Just as participation is commonly regarded in reference to social opportunities, improving research participation through the development and application of innovative and inclusive methodologies has a longstanding history in the social sciences (Clark 2018), and as research is a social enterprise, it is considered here to be a domain of social inclusion. Indeed, research practices are a “microcosm of the wider community” (Walmsley and Johnson 2003, p. 10). Innovation in the realm of socially inclusive research has arguably lagged behind in the health sciences, including the profession of nursing, which have been subjected to biomedical dominance and corresponding privileging of objectivity under the guise of positivism. As a result, certain fields of study have upheld a steadfast preference towards traditional methodologies that fall short of exemplifying inclusivity, and particular disciplines and domains of methodological development have failed to keep pace with the larger social discourse around social inclusion. Acknowledgment of the interpretive turn in health and social science research specific to constructivist research orientations most aligned with qualitative methodologies have contributed to a respondent exploration, varying degrees of legitimization and adoption of “alternative,” “innovative,” and often “visual” research methods within social and health science research, many of which have only just begun to tip the iceberg. As such, many social science and health research methodologies continue to be largely dominated by narrative-based approaches, such as focus group and individual interview methods (Keady 2018). The hegemony of such approaches can be criticized on multiple grounds, but of interest to this chapter are the conceptualizations and relationships of socially inclusive research methods and their corresponding impacts on other domains of social exclusion (e.g., chain of inclusion/exclusion). One area where this oversight can be noted is in the methodological field of mixed methods research (MMR) and the opportunities afforded by a

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new methodological development in the field, namely, arts-mixed methods research (arts-MMR) (Archibald and Gerber 2018; Archibald 2018). Research is a social tool. Social inclusion often speaks to inclusion in social activities. While this is clearly critical, the argument made is that research as a social tool should be subject to similar critiques of its social inclusivity as is witnessed the broader social arena. Following this logic, this chapter will introduce the concept of arts-MMR as a unique methodological domain with potential for socially inclusive research. The development of arts-MMR as a unique MMR application will be described and attention paid to the concept of inclusive research and the transformative paradigm. The epistemological dominance of “traditional” research conceptualization and the possibilities for a more ontological arts-MMR perspective will be introduced. The chapter will conclude with an exploration of power and its chain of influence, where the impetus for socially inclusive arts-MMR is explicated in reference to a broader understanding of social inclusion that goes beyond research methodology.

2

Arts-MMR: Context, Development, and Potential

Arts-MMR is a subspecialty of MMR, which has been coined the third methodological paradigm (Johnson and Onwuegbuzie 2004). MMR can be understood as research methodology or method depending on the extent of philosophical engagement, but at a minimum involves the meaningful bringing together – or integration – of qualitative (narrative) and quantitative (statistical) data within a single study or program of study. It is also understood as a way of thinking (Greene 2008). Predominant MMR scholars have documented a historical lineage of MMR, commencing with a formative period occurring between the 1950s to the 1980s, through a paradigm debate (1970s–1980s) and procedural development (1980s) towards an advocacy period (Creswell and Plano Clark 2011). While others recognize a more inclusive history beyond the formative period where MMR became a self-aware methodology (Maxwell 2016), what has become clear is that MMR is currently in a stage of methodological innovation and expansion. The explication of an intentional arts-MMR methodology has been part of this progress. Arts-MMR was first introduced by Archibald (2018) in the inaugural MMR manifesto, published in the International Journal of Multiple Research Approaches. The basis of considering the integration of arts and MMR was multifold, but largely predicated on each tradition’s complementary histories of methodological pluralism, notable similarities in the dialectical underpinnings of each tradition, and the identification that the arts and MMR can be mutually informative and foster social benefit (Archibald and Gerber 2018; Archibald 2018). To commence this inaugural exploration of arts-MMR integration, a scoping review was conducted, and six applications of arts-MMR were identified (i.e., art engagement; artistic process; understanding phenomena; art and learning; development; art content). Notably, the focus of arts-MMR integration in the resultant dataset illustrated an almost exclusive focus on arts’ episteme with fundamental neglect of arts’ transformative

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potentials (Archibald 2018). As a result, the following emerging definition was offered: “arts-MMR is research that combines arts research methodology with methods positioned in an alternative paradigm within a single study or program of study” (Archibald 2018, p. 349), new transformative and disruptive justifications were offered for an arts-MMR integration, and a preliminary continuum of artsMMR integration was delineated. Archibald and Gerber (2018) subsequently expanded upon the arts-MMR integration continuum, emphasizing that comparable to MMR more generally, true integration must go beyond a mere content-oriented relationship. For instance, a content-oriented relationship between arts and MMR involves using a MMR design to understand an aspect of the arts; here, MMR is fundamentally an approach to evaluating the arts and consequently falls short of offering meaningful opportunities for integration (Archibald and Gerber 2018; Archibald 2018). As such, the arts-MMR integration continuum offers the following four opportunities for integration, recognizing that any one study or program of study may employ and exemplify multiple components of this integration concurrently or sequentially. These components include: (i) communicative integration: using the arts to communicate findings from MMR research, thereby positioning the arts as a place of integration for MMR; (ii) data source integration: wherein artistic means are used as a source of data that are meaningfully integrated with other data forms, including quantitative/statistical data, within a MMR design; (iii) analytic integration: wherein arts-based approaches or techniques are used to facilitate some component of analysis in a manner not possible using non-arts-based approaches; and (iv) conceptual integration: wherein arts-based research as a distinct methodology that exemplifies tacit and embodied knowledge are interwoven throughout the MMR design (Archibald and Gerber 2018). As suggested, the development of arts-MMR is aligned with a broader methodological shift in MMR methodology, namely, that MMR is currently within an era of methodological expansion. MMR is increasingly being considered an inquiry logic capable of spurring new innovative research methodologies (Creamer and Schoonenboom 2018), such as arts-MMR design. Recent years have witnessed a proliferation of new methodological mergers aligned with this methodological expansion, including but not limited to mixed methods phenomenological research (Mayoh and Onwuegbuzie 2015), mixed methods poetry (Archibald and Onwuegbuzie 2020), continued development of mixed methods grounded theory (Guetterman et al. 2019) and case study research (Guetterman and Fetters 2018), and explorations of phenomenography as a paradigmatic foundation for MMR (Feldon and Tofel-Grehl 2018). While MMR has rapidly expanded across disciplines as diverse as business (Cameron 2011), the health sciences (Andrew and Halcomb 2009; Curry and Leslie 2015), and school psychology (Powell et al. 2008), acknowledgment of complexity science and complexity thinking perspectives in MMR have followed suit (Poth 2018; Uprichard and Dawney 2019). Aligned with these perspectives, MMR is now considered more than a homogenous research approach characterized solely by the methods employed, but as a diverse array of integrative approaches positioned to address complex phenomena (Creamer and Schoonenboom 2018).

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Arts-MMR Integration for Social Inclusion and Transformative Research

Critically, integration is a predominant characteristic of MMR and the value of this principle holds true in arts-MMR applications. Moving beyond the mere inclusion and integration of various research techniques towards a cohesive integrative methodology is paramount to achieving what has come to be known as the integration challenge in MMR, namely that MMR should be greater than the sum of its parts. This idea has been expressed by Fetters and Freshwater (2015) as the 1 + 1 ¼ 3 integration formula. Within the context of arts-MMR applications to socially inclusive research, meaningful integration can be realized when (i) the perspectives of marginalized and socially excluded individuals or communities are attained in ways attentive to the embodied nature of their experiences; (ii) these perspectives are attained in a manner that is “democratizing,” wherein academic-participant hierarchies are flattened through strategies aimed at dispersing power in choice and application of methodology; and (iii) these perspectives are meaningfully employed to shape understandings of the nature of the problem; how the problem is to be addressed; and how the problem, related data, and its solution are to be communicated about. This latter consideration (i.e., research dissemination) is a notable opportunity for arts-MMR utilization in the context of social inclusion, as academic publications themselves are characteristically exclusionary means of dissemination that infrequently reach the very participants that enabled their possibility in the first place. That academic publications as a predominant means of research dissemination are in themselves mechanisms of social exclusion warrants further unpacking in relation to arts-MMR methodology. In accordance with the arts-integration continuum (Archibald and Gerber 2018), communicative integration provides a material “place” for the bringing together of research findings to aid dissemination. However, since the arts are not the predominant language of academia, communicating research through the arts suggests an alternative privileging of audience than is typically witnessed with traditional academic publishing. An arts-MMR project employing communicative integration for a more socially inclusive objective may utilize a variety of means, such as visual art in an exhibition, a public artwork, or documentary film, for example. Such artistic forms are not possessions of the academy but rather, are languages and artifacts belonging to and residing within the broader social sphere. Hence, such avenues of dissemination carry with them a broader accessibility by virtue of their inclusivity, which can be of service to a more socially inclusive research agenda. Further, while “traditional” research methods utilized in qualitative and mixed traditions, including the standard interview, have been widely employed and uncountable hours of such data has been collected by researchers, there has been a notable disregard for the public archiving and corresponding lack of public access to such data (Chenier 2014). Publicly accessible documentation using artistic form (e.g., arts-MMR documentary film available on YouTube), while not a perfect solution thwarting issues of accessibility, does reflect values of inclusivity and accessibility that extend beyond academically meritorious outputs, such as the peer-reviewed publication.

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Another imperative consideration regarding arts-MMR in relation to socially inclusive research resides in the handling of paradigms and frameworks in MMR more generally. Specifically pertinent to social inclusion is a necessary consideration of the transformative paradigm within MMR (Mertens 2010). Mertens (2010, 2012a) conceptualized transformative MMR as a bridge between underpinning philosophy and the actual practice of MMR. Knowledge, within the context of transformative evaluation, is not neutral, but rather is a process linked with human interest, relationships, and power that plays out in the broader social context (Mertens 1999). In this foundational work, Mertens (2012b, p. 212) proposes that “transformative MMR is needed because research does not necessarily serve the needs of those who have been traditionally excluded from positions of power in the research world, and therefore the potential to further human rights through a research agenda has not been fully realized.” Arts-MMR provides an alternative opportunity to engage with these tenets, namely the concepts of service (e.g., catalyzing the therapeutic benefits of arts engagement for individuals and communities); understanding participant needs (e.g., by providing opportunities for developmentally appropriate and culturally sensitive research engagement); providing opportunities for research inclusion (e.g., through high accessibility of method and the democratization process); and by generating awareness (and potentially momentum) in the service of a human rights agenda (e.g., through publically accessible arts-MMR research dissemination outputs). Critically, Merten’s position problematizes a tension between what is “needed to accurately represent the experiences of marginalized groups and the traditional canons of research” (Mertens 1999, p. 1), which she explicates as objectivity, truth, reliability, and credibility. Here, she explicates the needed bridge between evaluation – and particularly inclusive evaluation – and societal transformation as it relates to vulnerable groups (Mertens 1999). Such a position begs consideration of a number of concepts, namely, accurate representation and experience. Arts-based approaches, which typically garner accolades on the basis of their ability to democratize the research space, create an equal playing field for research, provide new perspectives on experience, provide inclusive entry points into research for persons of various developments and ableness, and enable expression of experiences beyond the limitations of the spoken word, appear remarkably well suited to this task of “accurate” representation of experience. Unlike “traditional” and nonparticipatory research approaches that generally involve deference to the published academic literature to determine the scope and nature of the research problem, transformative MMR – like arts-based research – purports a wider approach. In transformative MMR, various qualitative or quantitative approaches and community/stakeholder engagement can be undertaken to determine the research focus while paying particular attention to issues of power (Mertens 2012b). Recalling the potential applications of arts-MMR, researchers can employ arts-engaged methods to aid in problem conceptualization, recognizing that “traditional” approaches (e.g., purely text-based academic literature from one methodology) reflect an insular and fragmented representation of experience. Engaging with arts, either from a researcher-as-practitioner (e.g., researcher as the maker of the

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art work) perspective or from a researcher-as-observer (i.e., participants expressing experiences using the arts) perspective, provides a more comprehensive and potentially complementary perspective on the research issue (Archibald and Blines 2021). Such perspectives may provide new considerations influencing the framing of the research problem that may have otherwise been overlooked. Hence, arts-based approaches to problem formulation and framing reflect congruence with the aims of a transformative approach to MMR with useful application to socially inclusive research.

4

Inclusive Research and Arts-MMR

Research practices exist not in isolation but within the broader social context and can, therefore, be regarded as a byproduct or symptomology of the historical and contemporary socio-political climate. The origins of research movements coincide with social developments, and often, the influence of such broader circumstances can be traced along the lineages of multiple research practices and methodologies. The concept of inclusive research is no such exception. Walmsley and Johnson (2003) traced the methodological lineage of inclusive research and discovered roots in participatory action, feminist, and qualitative research traditions more generally. Rooted in the recognized need for social justice for marginalized groups and a corresponding critique of the limitations of positivism, methodologies were constructed to offer new opportunities for voice, protection, and social change (Walmsley and Johnson 2003). Indeed, the promise of inclusive research – understood here as participatory, empancipatory or transformative research – has been its potential to give voice (Walmsley and Johnson 2003). Qualitative research, while reflecting a huge array of approaches, techniques, and other relevant variations, has held as a methodology potentially aligned with such inclusive tenets, the historical promise of inclusivity, in part by virtue of the interpretivist basis that innately privileges the attribution of meaning by individuals. This orientation towards constructed or attributed meaning positions qualitative research apart from any positivist counterpart and beckons recognition of the legitimacy of human experience. It is within this framework of valuing of the complexity of experience and the individualized yet shared nature of this experience, that qualitative research was recognized to make its contribution. Given that qualitative research largely seeks to understand the world through the perspective of others (Liamputtong 2020; Walmsley and Johnson 2003), it follows that such understanding (as is the case in any knowledge generating enterprise) is contingent upon the strategies used to generate such understanding. Qualitative research, by virtue of its inherently multimethod focus (Walmsley and Johnson 2003) and approaches, has been the natural garden for the growth of artsbased research approaches. Arts-based research is often considered a mode and form of qualitative inquiry and is defined as the use of any artistic approach (e.g., visual art, performance) to aid in the understanding and representation of phenomena by both researchers and individuals involved in a research study (Barone and Eisner 2012;

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Knowles and Cole 2007). The historical orientation of qualitative techniques as largely predicated upon the spoken or written word unduly restricts both comprehension and expression, and consequently, the extent of researcher understanding. Further, such emphasis illuminates an inherent bias towards a “suitable” level of cognitive and developmental capacity as a requirement for research participation. Consequently, the arts have been regarded as a means of moving beyond this narrow dependency on the verbal and written narrative expression, often receiving high accolades of producing multifaceted knowledge, deep insight, and the likes (Van Der Vaart et al. 2020). Take children, for instance, who have historically experienced research exclusion as a consequence of an adult (and positivistic) stronghold on knowledge production (McMellon and Tisdall 2020). In partial response to legislative changes that called attention to the rights of children to express their voices in relation to issues affecting them, children’s participation in research has increased substantially (Angell, Alexander, & Hunt, 2015). Part of this involvement has involved an expansion of methods and methodological approaches regarded as useful for improving participation and inclusivity. For example, traditional interview methods by virtue of their narrative emphasis, temporal orientation and requirements for historical recall, and sufficient developmental level of verbal expression are more frequently recognized as inappropriate, particularly for use with young children (Archibald et al. 2014a). A corresponding growth of arts-based data collection methods has emerged across various artistic disciplines such as visual art (e.g., photography, drawing), performance, or movement art, to more craft- or play-based orientations (e.g., Lego) (Angell et al. 2015; Archibald et al., 2014). Such methods provide an inclusive, equity-based response to the diverse needs of research participants who may otherwise be excluded from the research arena and, therefore, neglected the opportunity to provide input into issues affecting their lives. This is particularly critical for children facing intersectional disparities given the amplification of social exclusion thus encountered, such as the entangled influences and identities associated with race, gender, poverty, concurrent illness, and/or developmental difference, for example. Furthermore, methodological responses aimed at improving the involvement of marginalized groups such as children or persons with intellectual disabilities, or those facing intersectional discrimination, for instance, concurrently begs the question of what “counts” as legitimate knowledge in research (Cuevas-Parra and Tisdall 2019). This largely epistemological problematization of academic knowledge production is markedly similar to argumentation supporting arts-based approaches more generally (Archibald et al. 2014b) and warrants further investigation in light of its impact on social inclusion.

5

Broadening Inclusion Beyond Epistemological Concerns

Numerous research methodologies, including certain interpretations of arts-based research, emphasize the epistemological or knowledge “gains” of the arts (Barone and Eisner 2012). This is often apparent in the justifications for using arts-based approaches to data collection (Archibald and Blines 2021; Jagodzinski 2013). Such justifications commonly include gaining additional or “different” data, having arts-

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based data that provide a different perspective on an issue, and the notion that artsbased approaches can open up space for dialogue. These justifications are critical in their recognition that various methods provide entry points into research – entry points that may enable the expression of perspectives not verbally accessible due to developmental, neurological, cultural, or other axes of difference. Despite their relevance, these conceptualizations also under-acknowledge a fundamental contribution of arts-based methods in research methodology, namely, that arts provide a way of being in the world, which is fundamentally an ontological contribution. Certainly, research is most often considered a knowledge generating enterprise. Researchers are concerned with the knowledge that is produced through their approaches – a position well aligned with neoliberal ideals of the twenty-first century. Less acknowledged is how this knowledge in turn shapes the social world while being concurrently shaped by the social world in a inherently bidirectional process of co-construction. Similarly, through engagement with research, participants not only express their perspectives, viewpoints, and so forth, but these perspectives are used by researchers to construct and reinforce often socially constructed assumptions and perspectives in relation to dominant understandings of the social world. The formative influence that this process has on an individual remains largely under-acknowledged in research methodology; however, one need not look far towards disciplines with greater appreciation of this co-constructive ontological process. Poetry and storytelling, for instance, often exemplify this place of situated knowing. Arts-based praxis (i.e., practitioner as maker) relies on a process of being as the mechanism of production (Archibald et al. 2017). Here, knowledge is situated in the being, in the process of making, thereby challenging the cognitive dominance of knowledge production characteristic of much health and social science research, and as has been documented in applications of arts-MMR (Archibald 2018; Archibald and Gerber 2018). Another consequence of epistemological dominance in relation to arts-MMR resides in neglect of the transformative potential of the arts, arguably in favor of traditional production of research data. Arts participation certainly has potential to produce data of utility to academics; however, arts engagement and particularly arts based on transformative engagement can move beyond a production-orientation toward the “humane plane” (Nakamura 2019, p. 27). What is enabled through this orientation to arts engagement goes beyond the expressible towards the experiential, providing new opportunity for re-experiencing a (shared) reality, and at its most transformative, towards envisioning a new reality. Considering the values of participatory research as legitimizing and democratizing for often excluded individuals, such a transformative orientation towards the experiential basis of the arts suggests a promising domain for continued development.

6

Power and the Chain of Influence

Within the broader research enterprise, it is tempting to regard research as a neutral execution of ideological values such as objectivity, neutrality, or at a minimum, an altruistic pursuit of knowledge. For some, this altruism may extend into the desire to

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“apply” or implement this knowledge for social good. Within this ideological model, research is a nonpolitical force, free of the temptations of personal gain. That research can be a tool for upholding power by serving the interests of those already in power is rendered invisible. However, just as the public is quick to interpret and uphold the Foucaultian notion that knowledge is power, research, as the dominant method of knowledge production, is fundamentally an enterprise of power. That is, the research enterprise is an enterprise of power capable of upholding its own interests through its outputs and corresponding valuing of these outputs by powerful institutions (e.g., universities). Arguably, those who operate within this system may be largely unaware of its inner workings. Hence, there is a need to carefully consider and adopt guiding frameworks and sensitively attend to the underpinning paradigms and practices employed in pursuit of the ideals of research for social good. Just as “a single method. . . can yield misleading results” (Mertens 2012b, p. 214) so too can the oversight of “appropriate” methods of stakeholder engagement throughout various deliberate stages of the research process. In light of pronounced inequities regarding literacy, cultural differences influencing individual and community agency, and disenfranchisement of myriad groups on the basis of gender difference, for example, the potentials of arts-MMR in attending to such methodologically inclusive appropriateness become apparent. Take the commonly considered context of inclusive research for and with persons living with intellectual disabilities as an example. The explicated value of “giving voice” to persons with intellectual disabilities can be challenged by examining the actual practices employed for this stated purpose. Such was the motivation of Strnadová and Walmsley (2018) who examined the operationalization of this process in published academic literature conducted with persons with intellectual disabilities. Specifically interested in whether the contributions of these participant co-researchers were recognized through co-authorship, the authors identified that only 40% of articles met this standard. Without this formal recognition, there is a risk that the experience of exclusion can be amplified by “feeling used or made to feel inferior” (Nind 2014, p. 28). The same principle applies to arts-MMR, particularly when conducted using an observer stance (e.g., wherein participants are creators or co-creators of an artistic work), and reflects emerging debates on the ethics of artsbased health research more generally (e.g., accrediting artists/authors, power dynamics) (Yassi et al. 2016). Examination of historical exclusion of particularly populations in research sheds further light on this issue of power. Individuals marginalized in society, such as a persons living with disabilities, those persons disenfranchised on the basis of gender, race, and even age, experience deficient power and agency. This may again be amplified for persons facing intersectional discrimination, thereby emphasizing the importance of an intersectional lens to social inclusion research and resulting research mobilization. This social experience is a macrocosm of the research enterprise, where often-disenfranchised persons are underrepresented in research. This underrepresentation extends from mere inclusion in a research study, to meaningful inclusion of first-hand expressions of lived experience, through more nuanced expressions of agency/lack of agency such as lack of involvement in framing the

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research focus or problem, directing the approach to research, involvement in the research analysis/interpretation of the study findings, to determining the implications of the research. The consequent risk of this myriad “underrepresentation” is an overreliance on the framing, practices, and interpretations of the researchers, who are themselves productions of a dominant system of power (i.e., the broader research enterprise) designed (inadvertently) to uphold its own interests. The publication gets published, the grant gets attained, the promotion occurs, the students are recruited and trained, the researcher rewarded, the system perpetuated, and the impact on social inclusion remains open for criticism. A predominant consequence of this insular system of knowledge production is that research (largely supported by public dollars) reflects not the needs of communities most vulnerable, but the needs and desires and metrics of the dominant institution and its players. The knowledge produced within this system is invariably tethered to the system, but problematically is not critically examined in reference to this as a potential shortfall. There is a risk that the framing, gathering, interpreting, and contextualizing of the data are done in reference to the preexisting schemas and ways of thinking of the researcher or team, which are of course reflections of the academic training previously received, as well as an internalization of the larger social conditions giving way to the social construction of perspectives. The resulting research, therefore, may largely miss the mark, failing to reflect not only the most pertinent problems of societies most marginalized, but also misrepresenting their experiences by virtue of a potential mis-framing, narrow approach to representation, and concurrent insular interpretation. Problematically, this system then becomes self-perpetuating, as researchers seek to position or contextualize such findings within a larger body of research produced using fundamentally the same means, with confirmation of previous findings being rewarded as a currency for academic legitimacy. This is not to say that all research upholds the status quo and contributes to the ongoing marginalization of individuals through perpetration of the dominant “mechanistic” research ideology. There is a great deal of progress towards community agency in research, as demonstrated through many meaningful participatory and community-led projects, as well as frameworks such as Two-Eyed Seeing offered by Mi’kmaw Elders that seek to understand and dialogue between diverse ways of knowing between Indigenous and Western perspectives, for example (Iwama et al. 2009). However, methodological developments such as arts-MMR that bridges other ways of knowing such as tacit and explicit knowledge offer similar potential towards dialogical understanding with potential to disrupt this chain of influence.

7

Conclusion and Future Directions

Arts-MMR as a domain of MMR methodological expansion offers possibilities for socially inclusive research with various marginalized groups, given the breadth of its operationalization and range of uses within the research process (e.g., problem formulation, data collection, dissemination). As a tool for inclusive research, arts-MMR is well aligned with the transformative MMR framework, which, like participatory and emancipatory approaches, emphasizes meaningful participant

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involvement, accurate representation, and giving voice in the service of social change. Such development is critical given the inherent limitations of mono-method approaches, which often privilege verbal expression and thus inadvertently discriminate against those less capable of such expression. Further, by giving credence to the tacit nature of experience accessible through arts-engagement, participants may come to know something unique about themselves, their place in their world, and their social circumstance that can be powerful for a socially inclusive research agenda. The use of noninclusive methodologies is bound to negatively impact perspectives of social inclusion and resulting behaviors, practices, and policies. As a foremost issue for those interested in influencing socially inclusive services, programs, and policies, a neglect of the voices of marginalized groups prohibits recognition of their perspectives, rendering them invisible and incapable of informing initiatives devised for their benefit (e.g., programming, interventions, policies, knowledge translation initiatives). Exclusionary research practices further diminish acknowledgment of the person, providing in their place an approximation of their perspectives. This is in direct contrast to the “nothing about us without us” mandate that should guide research with traditionally marginalized and/or vulnerable groups, such as children, and persons with cognitive impairment or developmental differences, for example. Arts-MMR offers a framework for meaningful integration of tacit and explicit participant perspectives throughout each stage of the research process, enabling dialogue between various forms of evidence generated (e.g., evidence of lived experience, evidence of embodied experience, evidence of effectiveness) to help facilitate socially inclusive research with the aim of improving inclusion in the broader social context. As a recent methodological merger, there is great benefit in learning from future multidisciplinary applications of arts-MMR throughout various stages of the research process. What, for instance, can arts-MMR offer by way of divergent findings regarding problem formulation or program evaluation, for instance? How can transdisciplinary team science or developments in investigator triangulation (i.e., the meaningful bringing together of investigators of diverse skills and disciplinary backgrounds to support a research project) (Archibald and Gerber 2018) be leveraged in this research context? There is marked opportunity for researchers to engage in reflexive arts-based practices as a means of understanding positionality and how this might influence the framing of, or solution to, a research problem. Yet, systematic frameworks to support such endeavors warrant further development, in order to maximize the potential benefit of this innovative research domain for researchers interested in social inclusion.

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Social Inclusion Through Trauma- and Violence-Informed Research: A Focus on Survivors of Violence

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Dianne Lalonde, Robert Nonomura, Jassamine Tabibi, Linda Baker, and Marika Morris

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Conceptual Foundations of a Trauma and Violence Informed Framework . . . . . . . . . . . . . . . 2.1 Trauma and Violence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Trauma Informed Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Moving from Trauma Informed Approaches to Trauma and Violence Informed Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Principles of Trauma and Violence Informed Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 The Need for Trauma and Violence Informed Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Recognizing Harmful Research Conducted in Indigenous Communities Across Canada . . . 4 Trauma and Violence Informed Research and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 How Trauma and Violence Informed Research Contributes to Social Inclusion . . . 4.2 Practical Barriers to Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Including Investigators’ Well being in TVI Research Protocols . . . . . . . . . . . . . . . . . . . . . 4.4 Inclusion on Whose Terms? And in Whose Voice? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Recognizing Strength in the Face of Structural Violence . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Applying Trauma and Violence Informed Principles to Research . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Understand Trauma and Violence and Their Impacts on Peoples’ Lives and Behaviors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Create Emotionally and Physically Safe Environments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Foster Opportunities for Choice, Collaboration, and Connection . . . . . . . . . . . . . . . . . . . .

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D. Lalonde (*) · R. Nonomura · J. Tabibi Learning Network, Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada e mail: [email protected]; [email protected]; [email protected] L. Baker Centre for Research & Education on Violence Against Women & Children, Western University, London, ON, Canada e mail: [email protected] M. Morris School of Indigenous and Canadian Studies, Carleton University, Ottawa, ON, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_21

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5.4 Provide a Strengths Based and Capacity Building Approach to Support Coping and Resilience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Considering TVI Research More Broadly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Trauma- and violence-informed research represents an approach to knowledge production that acknowledges how research can propagate harm and that attempts to protect against further harm. Trauma- and violence-informed research recognizes that participants may be affected by violence, victimization, marginalization, exclusion, and other traumatic experiences. All aspects of the research are designed in a way that does not re-traumatize the research participants but actively promotes their healing, social inclusion, and participation in research design. This chapter includes examples of why trauma and violence are significant considerations for how research is conducted in Canada. Some of these examples are of research which has caused trauma and contributed to social exclusion, such as research performed on rather than with Indigenous peoples, many of whom are survivors of physical, sexual, emotional and state violence, and trauma. Other examples illustrate the potential for more inclusive research practices. A focus on trauma- and violenceinformed research goes beyond avoiding the traumatization of participants through insensitive methodologies. It is rooted in respect for, and work with, survivors of trauma and is most often led or co-led with survivors themselves. Trauma- and violence-informed research is appropriate for any population having experienced physical, sexual, psychological, social, or other trauma, such as refugees, frontline responders or others with post-traumatic stress disorder (PTSD), persons from LGBTQ+ communities, Indigenous peoples, racialized populations, and other populations having experienced trauma and/or social exclusion. Keywords

Trauma · Violence · Trauma- and violence-informed · Research

1

Introduction

Over the past several decades, a growing body of research has emerged on trauma and its harmful impacts on the lives of individuals (Elliott et al. 2005; Hughes et al. 2017). Likewise, trauma-informed approaches to supporting people with lived experiences of violence and/or trauma have gained significant attention among scholars and practitioners in a variety of fields including social work (Mersky et al. 2019), healthcare (Purkey et al. 2018), and education (Ontario Federation of Indigenous Friendship Centres 2016). More recently, some scholars have expanded the concept of trauma-informed approaches to include the term “violence” to draw attention to acts of violence and their traumatic impacts, as well as the broader social conditions that impact people’s health such as institutional violence and discrimination (Ponic et al. 2016).

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Trauma- and violence-informed (TVI) approaches are guided by the following four principles: (1) understand trauma and violence and their impacts on people’s lives and behaviors; (2) create emotionally and physically safe environments; (3) foster opportunities for choice, collaboration, and connection; and (4) provide a strengths-based and capacity-building approach to support coping and resilience (Ponic et al. 2016). These principles are informed by past and ongoing work on trauma and trauma-informed approaches (SAMHSA 2014b; Covington 2008; Elliott et al. 2005). In what follows, this chapter will be using these principles as a guide to discussing TVI approaches. Until now, TVI approaches have largely been applied within service provision, as opposed to research. However, given that researchers, especially those in the health and social science fields, may be working with people who have experienced trauma and violence, it is critical that research practices, processes, and procedures be guided by TVI principles. This is not only in order to avoid re-traumatization of participants but also to help reorient the goals of research and the involvement of research participants to one of social inclusion, social justice, and equity. The goal of this chapter is to discuss how TVI approaches would be useful for research, especially in terms of promoting social inclusion, and to provide some guidance on how to apply TVI principles when conducting research. This chapter begins by providing a brief overview of trauma and TVI approaches, followed by an argument as to why TVI approaches should be embedded in research processes that are committed to social inclusion. Next, it discusses some of the ways that TVI approaches might address barriers to social inclusion in research. Finally, this chapter offers examples of how TVI principles could be applied to different phases of research (e.g., recruitment, data collection, dissemination).

2

Conceptual Foundations of a Trauma- and Violence-Informed Framework

2.1

Trauma and Violence

Trauma is defined as “an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being” (SAMHSA 2019). This can include experiences of interpersonal violence (e.g., sexual assault, intimate partner violence), accidents, natural disaster, war, stigma, abuse, sudden unexpected loss, or other life events outside of one’s control, as well as early life experiences including child abuse, neglect, witnessing violence, and disrupted attachment (Covington 2008; British Columbia Provincial Health and Substance Use Planning Council 2013; Ponic et al. 2016). Trauma is both the experience of, and a response to, these events. In the context of violence, trauma can be acute (resulting from a single event) or complex (resulting from repeated experiences of interpersonal and/or systemic violence) (Ponic et al. 2016).

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Experiences of trauma and violence affect everyone differently. Some individuals may exhibit behavior associated with post-traumatic stress disorder (PTSD). Others may not show any signs or show minimal signs of being affected, and thus they may not receive any formal diagnosis or seek support. How an individual experiences trauma depends on many factors including type and nature of the traumatic event, sociocultural factors, age, and other individual characteristics (SAMHSA 2014a). Trauma can affect an individual’s neurobiology and alter behavior in both children and adults (Green et al. 2016). Numerous studies have captured the profound health impacts of trauma and violence (Anda et al. 2006; Muskett 2014) and the connections between trauma and mental health problems such as PTSD, substance abuse disorder, depression, and suicide (Anda et al. 2006; Green et al. 2016; Katz and Gurtovenko 2015). Trauma has also been linked to a number of health conditions including heart disease, chronic pain, obesity, liver disease, smoking, and diabetes (Dong et al. 2003; Edmondson et al. 2013; Gilbert et al. 2009; Liebschutz et al. 2007). One-size-fits-all approaches are not appropriate to address the impacts of trauma on an individual’s life. In order to recognize and foster resilience in individuals, there needs to be an awareness of trauma and violence and their impacts so as to best work with individuals in their healing. Systemic and intersectional violence and trauma can have harmful impacts on individuals and communities. For instance, racial trauma (also known as race-based traumatic stress) is the psychological, emotional, and physical injury resulting from experiencing racism (Bryant-Davis 2007; Carter 2007). It can include experiences of overt and covert interpersonal discrimination and harassment, as well as institutional and systemic racism (Bryant-Davis 2007; Carter 2007). While it shares similar symptomology to that of PTSD (e.g., hypervigilance, flashbacks, avoidance), racial trauma captures the cumulative effect of historical, generational, and ongoing experiences of racism that is not included in the diagnostic criteria for PTSD (Carter 2007; Helms et al. 2010). Systemic racism is also a key driver of health inequities that can have devastating consequences on the health and well-being of certain groups of individuals. For example, Indigenous communities in Canada continue to face the effects of systemic racism in the form of colonial policies (e.g., mandatory residential schools, discriminatory child welfare legislation), limited healthy food choices (e.g., due to dispossession of traditional lands and limited access to traditional foods), inadequate living conditions (e.g., precarious housing and overcrowding), and substandard healthcare (e.g., interpersonal racism toward Indigenous patients from healthcare providers, limited access to medical procedures and tests) (The College of Family Physicians of Canada 2016).

2.2

Trauma-Informed Approaches

In the last few decades, the movement toward trauma-informed approaches has gained momentum in sectors related to mental health and substance use (British Columbia Provincial Health and Substance Use Planning Council 2013; Covington 2008; Savage et al. 2007), justice, housing, anti-violence, and social work (Strand

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et al. 2016; Hopper et al. 2010; Dechief and Abbott 2012). This movement emerged partly in response to an increased understanding of the impacts of trauma on people’s health and well-being (Felitti and Anda 2010) and the need to deliver services and design systems that adequately accommodate their needs (Greaves and Poole 2012). Responses to supporting people with lived experience of trauma and violence have evolved over the years. Prior to TVI approaches, different generations had different ways of promoting healing and recovery (Substance Abuse and Mental Health Services Administration [SAMHSA] 2014a). First-generation approaches focused on individual and clinical interventions, mainly for individuals with experiences of war. Growing recognition that trauma is experienced by many more groups than those who have gone through war prompted the need for a new generation of approaches. Second-generation approaches were more inclusive of the multitude of ways that trauma could be experienced. These approaches focused on psychosocial education, including group work and peer support models. What was found to be lacking in the second-generation approaches was a broader understanding of how services need to account for and respond to trauma throughout service delivery. To encompass these deeper understandings, a third generation of approaches emerged: trauma-informed approaches. Trauma-informed approaches emerged to enhance support services for those who may have experienced violence with traumatic effects (Ponic et al. 2016). They do so by recognizing the prevalence of trauma and its short-term and long-term impacts on an individual’s health and well-being. Hopper et al. (2010, p. 82) define traumainformed care as: A strengths based framework that is grounded in an understanding of and responsiveness to the impact of trauma, that emphasizes physical, psychological, and emotional safety for both providers and survivors, and that creates opportunities for survivors to rebuild a sense of control and empowerment.

Trauma-informed care offers many benefits and does not force individuals to disclose experiences of trauma and violence. It encourages those working with individuals who have experienced trauma and/or violence to reframe their thinking from “What’s wrong with you?” to “What happened to you?”. Thus, traumainformed approaches are not only about “treating” trauma through counseling or specific interventions but also about creating environments that promote healing and prevent further re-traumatization in people who have experienced trauma (SAMHSA 2014a).

2.3

Moving from Trauma-Informed Approaches to Trauma- and Violence-Informed Approaches

More recently, Canadian scholars have pushed to expand the concept of traumainformed approaches to bring greater attention to the role of structural violence (Ponic et al. 2016; Varcoe et al. 2016). They observe that trauma-informed approaches tend to address trauma and violence as an individual problem, with

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identifiable victims and perpetrators whose choices and agency are exercised independently of broader social structural factors (Ponic et al. 2016). As a consequence, trauma-informed approaches appear to be primarily, though not exclusively, applied in clinical settings as opposed to other systems (e.g., legal system, social services, economic structures) (Befus et al. 2019). From this paradigm, experiences of violence are assumed to be uncommon, discrete events rather than pervasive aspects of everyday social relations (Collins 2017; Public Health Agency of Canada [PHAC] 2018). By broadening the scope of trauma-informed approaches to also include violence, it is possible to more thoroughly address how structural violence influences the rates of trauma and violence experienced by individuals, how it impacts them in various ways, and how services respond (or fail to respond). TVI approaches also recognize that individuals may both be “survivors” of different forms of violence with traumatic effects and “experiencers” of ongoing interpersonal violence and current and ongoing structural violence (Browne et al. 2015; Montesanti and Thurston 2015). The “shift in language” to include violence in trauma-informed approaches is, therefore, an important one. It also opens the door to further useful concepts, like that of intersectionality (Ponic et al. 2016). Intersectionality is a term coined by feminist legal scholar Kimberlé Crenshaw (1989) and enriched by ongoing discussions regarding oppression occurring in Indigenous, Black, and queer studies (Hankivsky and Cormier 2009). In her seminal paper, Crenshaw (1989) explores how systems of racism and sexism “intersect” to uniquely affect the lives of Black women. Thus, intersectionality recognizes the ways that individuals may experience intersecting forms of oppression and violence based on their social locations (Collins 2017). Among trauma healing and recovery approaches, TVI approaches are unique in their focus on structural violence. Reducing and preventing the trauma and violence experienced by marginalized groups begins by examining and unpacking the intersecting oppressions they face, and TVI approaches allow practitioners to do that in a way that trauma-informed approaches may not (Befus et al. 2019). An intersectional lens additionally brings attention to how individual experiences of traumatic violence—as well as the interactions and circumstances that precipitated it—are often connected to wider systems of violence and oppression (Ponic et al. 2016; Gabriel et al. 2017; Mulla and Hlavka 2011; Riddell et al. 2017; Varcoe et al. 2016).

2.4

Principles of Trauma- and Violence-Informed Approaches

TVI approaches are guided by four principles that can be generalizable across various clinical and research settings: (1) understand trauma and violence and their impacts on peoples’ lives and behaviors; (2) create emotionally and physically safe environments; (3) foster opportunities for choice, collaboration, and connection; and (4) provide a strengths-based and capacity-building approach to coping and resilience (Ponic et al. 2016).

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The first principle seeks to ensure an understanding that individuals may have experienced potentially traumatic events, that violence and trauma are connected, and that trauma and violence have significant impacts on an individual’s health and well-being. This knowledge can help those working with individuals to better understand traumatic stress reactions and how to be responsive and supportive in their interactions. The second principle emphasizes the necessity of providing emotionally and physically safe environments for those who may have experienced trauma and violence. This includes providing services in a manner that allows people to feel deserved, understood, recognized, and accepted (Ponic et al. 2016). The third principle relates to the importance of acknowledging power imbalances between those who may have experienced trauma and violence and those in a position of authority (e.g., service providers, researchers, practitioners); centering survivors’ voices; and fostering respect, agency, and empowerment. The fourth principle focuses on challenging deficit-based conceptions of trauma and victimization (i.e., emphasis on the need to correct the moral deficiencies and behavioral failings of individuals, see Hill and Thomson 2017) and seeks to emphasize the strengths, resilience, and coping skills of those who have experienced trauma and violence. Embedding these principles into wider systems and organizational practices ensures that “universal trauma precautions” (i.e., a generalized application of TVI approaches to all parties involved in the research) are being undertaken to reduce harm and provide meaningful supports for people (Raja et al. 2015). Furthermore, they increase safety, control, and resilience for people seeking supports who may have experienced violence and trauma (Ponic et al. 2016). As such, applying TVI principles to research is an important and worthwhile endeavor.

2.5

The Need for Trauma- and Violence-Informed Research

While principles and practices of TVI frameworks generally have been applied to service provision and system design in healthcare and other service sectors, it is now increasingly recognized that these frameworks also need to be applied to research. Given that traumatic experiences are understood to be common (Fallot and Harris 2009; Farro et al. 2011), researchers are likely interacting with trauma survivors during research, particularly health-oriented and social sciences research. As such, universal precautions should be implemented in research processes, practices, and procedures to avoid re-traumatization and harm of research participants, even subtly and inadvertently (Raja et al. 2015). TVI principles applied in research can also contribute to the social inclusion of research participants by prompting their healing, their involvement in identifying research questions, and their advancement in society. The next section provides a brief overview of research conducted in Canada that has caused harm, particularly in Indigenous communities. It then presents the case for how TVI principles embedded in research can reframe traditional goals of individual engagement in research to ones of social inclusion, social justice, and equity.

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Recognizing Harmful Research Conducted in Indigenous Communities Across Canada

Perhaps the most contentious issue in research practices across Canada (and around the world) remains conducting research in Indigenous communities. In Decolonizing Methodologies, Māori scholar Linda Tuhiwai Smith (1999) explains that “the term ‘research’ is inextricably linked to European imperialism and colonialism. The word itself, ‘research,’ is probably one of the dirtiest words in the indigenous world’s vocabulary” (p. 1). Non-Indigenous researchers have historically carried out the majority of academic research in Indigenous communities, rarely resulting in direct benefits for these communities and sometimes resulting in harm (Liamputtong 2010). This has led to some Indigenous communities, such as First Nations, feeling that they have been “researched to death” with little positive outcomes (Schnarch 2004). Some of the most notable examples in Canada include the nutrition experiments on Indigenous children attending the residential school system, skin-grafting experiments on Inuit, the Bacille Calmette-Guérin (BCG) vaccine trials, and the coerced/forced sterilization of Indigenous women (Hyett et al. 2019). As a result of these and other abuses, Indigenous peoples rightly view settler-colonial research with apprehension and mistrust (Canadian Institutes of Health Research et al. 2018, ch. 9). The nutritional experiments were conducted in residential schools during the 1940s and 1950s in which Indigenous children were malnourished for the sake “of scientific inquiry” (Mosby 2013). Some of these studies included physical examinations, blood tests, and radiographs with researchers noting “profound malnutrition and near starvation” (Mosby 2013). When earlier studies pointed to poor nutrition in residential schools, rather than improving the food situation and providing nourishment, schools were treated as laboratories to study nutrient requirements in malnourished children. Ultimately, none of these experiments had any positive or beneficial impacts for the individuals or communities under study. In fact, these experiments failed to address root causes of malnourishment and instead viewed Indigenous bodies as “experimental materials” rather than human beings deserving of dignity and adequate nourishment (Mosby 2013). To ensure harmful research practices no longer occur in Indigenous communities today, several community-centered research policy frameworks have emerged in Canada due to Indigenous-led advocacy and resiliency. Over the last several decades, principles embedded in research policies have modified the way Indigenous health research is conducted. In particular, three key policy frameworks guide research involving Indigenous people in Canada: the Tri Council Policy Statement (TCPS) 2 for research with First Nations, Inuit, and Métis people; the Ownership, Control, Access, and Possession (OCAP) principles for research with First Nations communities; and Inuit Tapiriit Kanatami’s Negotiating Research Relationships with Inuit Communities: A Guide for Researchers (ITK and NRI 2007). These frameworks have institutionalized a new set of practices for Indigenous research that work in conjunction with community-developed guidelines to orient Indigenous communities as leaders and collaborators in the research process (ITK and NRI 2007).

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Trauma- and Violence-Informed Research and Social Inclusion

Though there is no singular definition of social inclusion, there is a general consensus that a “socially inclusive society is one in which people feel valued, their differences and rights are respected, and their basic needs are met so that they can live in dignity, and have their voices heard” (Toronto Public Health and Wellesley Institute 2019, p. 6). Strategies for social inclusion continue to be a key focus of provincial and territorial health, economic, and poverty-reduction policy frameworks in Canada, in attempts to improve health and well-being by addressing the social determinants of health. Within the growing literature on social inclusion, there has been considerable attention paid to social inclusion as a by-product of research and specifically the need to promote knowledge production that centers the voices and needs of marginalized groups and empowers them to make choices and decisions best suited for them. Advocates have long promoted the necessity of more actively and thoroughly including individuals and communities in research, especially in publicly funded health research. This involvement has its roots in HIV/AIDS research, in addition to the disability movement that popularized the phrase, “Nothing about us without us” (Shimmin et al. 2017, p. 2). An example of exclusionary practices and the potential for change can be seen in healthcare research. More recently, the primary goals of engaging participants in health research has been to enhance personal health decision-making (Thornton et al. 2003) and/or strengthen research (e.g., improving accountability, quality, and transparency of research) (Boote et al. 2002). However, advocates continue to criticize research that prioritizes researchers’ needs over the needs of the communities they are researching as it risks reproducing existing inequities by providing power to certain voices over others—specifically, voices that come mainly from White, middle-class people who are able to access healthcare and do so with ease and who feel comfortable with identifying as a patient (Hynes 2013; Shimmin et al. 2017). Thus, health research continues to exclude many people who face challenges in accessing healthcare including Indigenous peoples, immigrants, refugees, and people living with mental illness (Roche et al. 2020). In a 2017 commentary paper, Shimmin et al. (2017) provide an argument for re-examining patient engagement in health research using a health equity and social justice lens. In particular, they advocate for an approach to health research that recognizes “the intersecting processes by which power and inequity are produced, reproduced, and actively resisted across levels of structure, identity and representation” (Shimmin et al. 2017, p. 3). Such an analysis would recognize the role of trauma when conducting health research and the reality that systems and services in the healthcare sector can themselves be trauma-inducing—and thus, systemically violent. Shimmin et al. (2017) add that research guided by trauma-informed principles and an intersectional lens allows both researcher and person with lived experience of trauma and violence to confront, and disrupt, the process of “othering.” The removal of this binary categorization of “researcher” and “person with lived experience” means power can be resisted and renegotiated, fostering trust and resiliency on both sides (Shimmin et al. 2017).

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Applying TVI principles to research, thus, presents opportunities for the creation of meaningful research that can support the goals of social inclusion, social justice, equity, and truth. For one, they emphasize the necessity of safe and meaningful relationships through the research process and they recognize the problems that unresolved historic and systemic violence present for fulfilling those necessities. As such, TVI approaches to research can become both informative and “transformative,” as “they create the potential for relationships that recognize the impact and prevalence of historic trauma, move beyond the stigma of problematizing behavioural outcomes, and create strategies that are responsive to addressing underlying issues” (Ontario Federation of Indigenous Friendship Centres 2016, p. 4). Furthermore, conducting research through a TVI lens encourages critical reflexivity among researchers to examine the relevance of research questions to the communities in question; gauge the level of engagement by various stakeholders; and commit to social justice, reciprocity, and redistributing power in the research process (Befus et al. 2019). The following section examines more closely how TVI research can contribute to social inclusion and highlights the challenges and barriers to developing socially inclusive research.

4.1

How Trauma- and Violence-Informed Research Contributes to Social Inclusion

Just as social exclusion can be regarded as “both an outcome and an array of social processes” (Lui et al. 2011, p. 268), so too does violence manifest as both a lived experience and a social structural phenomenon. TVI research adopts a multidimensional approach to “understand[ing] how trauma and violence impacts people’s lives and behaviours” (PHAC 2018, para. 4), and it draws upon that understanding in its methods for participant inclusion and support. In Canada, people’s experiences with trauma and violence are shaped by systems such as settler-colonialism, heteropatriarchy, capitalism, ageism, ableism, and racism. Complex patterns of privilege, power, and marginalization take place at the intersections of these systems (Collins 2017). Thus, survivors of violence (e.g., domestic abuse, civil war, assault) may face trauma not only from the experience itself but also from various systemic barriers to the supports they need in order to heal and/or receive justice. From a TVI perspective, socially inclusive research goes beyond discerning these patterns across “diverse” populations; it is most importantly about avoiding re-traumatization and stigmatization by promoting the safety and agency of the people being researched (First Nations Health Authority 2016; PHAC 2018). This is vital in any context, but particularly so in research directly involving populations that have experienced physical, sexual, psychological, and/or intergenerational trauma and violence. As is discussed below, TVI approaches to social inclusion are also important for challenging the prevailing narrative of fragility, vulnerability, and passivity often ascribed to survivors—especially those who experience multiple axes of oppression (Collins 2017). Since social research itself has often reproduced hegemonic power relations in its own protocols, a TVI

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perspective encourages reflexive considerations about the inclusivity of a study’s design, its staffing, its execution, and its dissemination (Burgess-Proctor 2015; Clark et al. 2010; Gabriel et al. 2017; Graham et al. 2015). This section highlights some practical and conceptual problems that trauma and violence can pose for developing socially inclusive research. It demonstrates how, in the face of intersecting social oppressions, TVI research raises challenging questions about the social circumstances that may make various inclusion strategies beneficial or harmful to research participants.

4.2

Practical Barriers to Social Inclusion

Fostering trusting, open, non-judgmental communications is an important aspect of socially inclusive research because it orients the research process to the experiences of the whole person, as opposed to treating people merely as objects of analysis. Developing research protocols with an awareness of trauma and violence can help prevent barriers to each person’s inclusion in research. However, since trauma and violence—like social exclusion and inclusion—are “context-dependent” phenomena, it is worthwhile to consider their relevance in practical terms (Silver 2015; Varcoe et al. 2016). At an individual level, survivors of trauma and violence may be deterred from participating in a study due to concerns over safety—not just the safety of the research methodology but also safety relating to factors such as the location of an interview, medium of correspondence, and so on (Fontes 2004; World Health Organization [WHO] 2016). Survivors of trauma, for instance, may be wary of potential triggers in the data collection methods (e.g., the gender of an interviewer, the nature of questions) or environmental factors in and around the research location (e.g., stimuli such as smells or the proximity to a police station or hospital) (PHAC 2018, p. 4). Survivors of intimate partner violence have good reason to be concerned about whether sharing their experiences in a study will put them at risk of escalated violence if confidentiality is broken: an intercepted text or voicemail message may present risks of harm to participants involved in abusive relationships (Fontes 2004; WHO 2016). For individuals who also face systemic racial or colonial violence, such concerns may intersect with fear that a disclosure of domestic violence or financial hardship will result in having one’s children taken away by the state. In the authors’ home of Ontario, Canada, such fears are unfortunately well-founded, considering the fact that proportions of Indigenous and Black children taken into children’s aid societies are respectively 2.6 and 2.2 times greater than their proportion in the population (Ontario Human Rights Commission 2018, p. 2). These patterns reflect broader patterns of criminalization and structural violence against Black, Indigenous, and People of Colour (BIPOC) in Canada, especially when considered in light of the prevalence of sexualized violence against children in foster care (Turpel-Lafond 2016). At the interactional level, research itself can (intentionally or unintentionally) promote inclusion or exclusion through things like interview questions, interviewer behaviors, or the manner in which certain topics are introduced. As TVI researchers

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at the Public Health Agency of Canada caution, “service providers and organizations who do not understand the complex and lasting impacts of violence and trauma may unintentionally re-traumatize” their clients or research participants (PHAC 2018, p.1). For example, interviewees may experience distress or discomfort over blunt questions about physical, sexual, or psychological violence or questions pertaining to the settings where such experiences may have occurred (Morris 2016). In Canada, institutions such as foster homes, churches, prisons, police, and the residential school system have long histories of violence against women, BIPOC, and 2SLGBTQ+ individuals (Maynard 2017). Although a researcher may not intend to broach topics of abuse directly, and although a participant may not have firsthand experience of abuse from these institutions, questions about these sorts of institutions may elicit painful emotions if they are not addressed in a culturally responsive way (i.e., in a way that is responsive and respectful of the “beliefs practices, culture and linguistic needs” of diverse populations and communities. See Rural and Regional Health and Aged Care Services 2009, p. 12). These considerations illustrate why trauma and violence must not only be understood as having harmfully exclusionary effects (e.g., due to non-participation); they also pose potential harm to those who are included in research. When research instruments are developed with an inadequate understanding of trauma and violence, including culturally specific trauma and the impact of intergenerational trauma, participants are put at risk of distress that could otherwise be avoided. Thankfully, minimizing the risk of harms does not require a curtailment of trauma-related research, nor does it require participants to disclose their experiences of violence through invasive screening measures (e.g., eligibility criteria that takes a single-step approach to inquiring about experiences of violence, without first building rapport. See WHO 2016, p. 23). In fact, such strategies may pose their own risks of exclusion and re-traumatization. PHAC (2018) notes that “re-traumatization can happen each time an adult or child needs to re-tell their story of abuse when seeking help across sectors, organizations or service providers, or when people experience discrimination, marginalization, or stigma.” A more positive approach to the problem is the innovation of protocols that are safe for all participants involved, irrespective of whether they are known to have experienced violence or not. The implementation of “universal trauma precautions” enables researchers to tailor social inclusivity and safety protocols to the specific social conditions in which the study takes place while also being consistent in the application of these methods. For instance, Morris (2016) notes how consultations with counselors or Elders within a community can help researchers to collect information in ways that are both “culturally safe” for participants and also better suited to meeting the knowledge needs and interests of the communities involved (p. 115).

4.3

Including Investigators’ Well-being in TVI Research Protocols

Precautions against (re-)traumatization need not apply only to study participants. Mental health literature describes how clinicians, frontline service staff, counselors,

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and researchers may experience “vicarious trauma” and/or “secondary traumatic stress” as a result of working with individuals who have undergone traumatic experiences (Devilly et al. 2009; Guitar and Molinaro 2017; van der Merwe and Hunt 2019). “Vicarious trauma” refers to the “cumulative transformative effect” on an individual’s beliefs (including beliefs about themselves, others, and society) which can occur over time from continuous exposure to the traumatic experiences of others (Devilly et al. 2009, p. 374; Guitar and Molinaro 2017). “Secondary traumatic stress” refers to the development of the post-traumatic stress disorder (PTSD)-like symptoms resulting from “indirect exposure to trauma,” such as traumatic or violent experiences disclosed by research participants (van der Merwe and Hunt 2019, p. 11). In their study of researchers conducting fieldwork with trauma survivors, van Der Merwe and Hunt (2019, p. 11) describe how fieldworkers exposed to narratives of trauma and violence report experiencing “grief,” “anxiety,” and “deep sadness” over the experiences of their interviewees. Without adequate training and access to support resources, researchers may react by “zoning out” in the days following an interview, resigning from their position, or losing their sense of personal boundaries with participants (van der Merwe and Hunt 2019). In one case noted by van Der Merwe and Hunt (2019, p. 16), a “fieldworker’s empathy and associated loss of personal boundaries overwhelmed her ability to keep to the protocol provided,” leading her to give out her own phone number to a patient expressing suicidal ideation. Researchers affiliated with the Knowledge Hub at the Centre for Research & Education on Violence Against Women & Children (Ontario, Canada) identify this kind of “blurring” of role boundaries (i.e., confusion resulting from the overlapping demands of collecting data while also supporting participants) as a major ethical challenge facing researchers engaged in TVI research on gender-based violence interventions (Nonomura et al. 2020, p.22). In addition to more general recommendations that might support frontline researchers, such as forming Communities of Practice and providing researchers with opportunities to debrief after emotionally difficult experiences, they propose that situation-based training be developed that may better prepare TVI researchers to navigate sources of vicarious and secondary trauma. Specifically, they propose that investigators be trained to: • “[Adopt] proactive strategies for self-care and preventing vicarious trauma or secondary traumatic stress” • “[Recognize] signs” that “a colleague (or oneself) [is] experiencing vicarious trauma or secondary traumatic stress.” • “[Plan] multiple paths for individuals to reach out for assistance if/when such stressors become a problem.” (Nonomura et al. 2020, p. 43). Adopting a TVI approach to research requires taking an inclusive view of participant safety that recognizes all parties involved in the research (study “subjects” and investigators alike) as worthy of support. In this regard, a trauma- and violence-informed approach to research entails a careful consideration of the

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emotional, physical, and cultural safety of researchers too. It recognizes that these safety needs may differ based on the social location of the researcher, depending upon the intersection of their own lived experiences with trauma and violence, their roles and/or status within the research project (e.g., Principal Investigator, interviewer, administrative assistant), and the broader social conditions shaping their work. Accordingly, in addition to providing support for the vicarious and secondary trauma discussed above, research plans should also take into account pervasive structural inequities faced by researchers such as sexual harassment (Benya 2019), unequal divisions of labor (Evans and Moore 2015), and underrepresentation of racialized women in academia (Katshunga et al. 2020). In short, a research culture that normalizes social equity, emotional check-ins, access to mental health counseling services, cultural responsiveness, and safety for everyone involved is elemental to a socially inclusive and TVI research approach.

4.4

Inclusion on Whose Terms? And in Whose Voice?

An awareness of trauma and violence challenges the kind of de-historicized, de-politicized approaches to social research that may cause the research to become a source of trauma and violence in its own right. It instead provides a framework for contextualizing the broader circumstances under which researcher–participant interactions take place, and it problematizes how these conditions affect the well-being of each person involved. Since research entails a process of knowledge construction (and not just data collection), a TVI perspective, therefore, requires investigators to think and act reflexively about the kinds of choice, collaboration, and connection that takes place with participants in the research processes. In light of ongoing structural violence in society, whose perspectives, whose interests, and whose voices are actually being included in the research? Being trauma- and violence-informed entails accountability not only for practitioners to avoid perpetuating the exclusionary effects of structural violence but also to avoid the kinds of “perverse expressions of social inclusion” that may result from systemic violence—and that may inflict their own forms of harm (Silver 2015, p. 22, emphasis added). The exploitative nature of past and present colonial research provides a case in point of this dynamic. Throughout the history of colonization in Canada, extractive research has been used to exercise control over Indigenous lands and bodies (Simpson 2017). Despite token inclusions of Indigenous perspectives in social science and policy evaluation research, colonial institutions have an ongoing history of appropriating information from communities and offering little in return. In many settler-led research projects, the “inclusion” of Indigenous communities (and other marginalized communities) has often extended only to collecting information on the “object” of research. Rarely does it extend to the formulation of research questions, methods, theories, recommendations, or to decision-making over budgeting, data, or copyrights. In effect, Indigenous communities—and other communities that bear the violence of racism, colonization, ableism, heteropatriarchy, and/or capitalism—may be

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included as “subjects” of a study, but not in the actual knowledge that it produces, even when this knowledge is about themselves. Intersectional feminist researchers have criticized how, on issues ranging from human trafficking (Kempadoo 2015; Hu 2019), to North American colonization (Clark 2016a; Moore et al. 2017; Simpson 2017), to trauma itself (Burgess-Proctor 2015; Clark 2016a, 2016b; Fontes 2004), research has historically obscured the agency and resiliency with which people survive these experiences, instead overemphasizing their victimization, crisis, and passivity. Such depictions perpetuate a “pernicious ignorance” of the resilience exercised by those who experience violence, which in turn reinforces the idea, prevalent in much of the prevailing research literature, that such people must be rescued, saved, and/or protected by those in positions of authority (politicians, NGOs, researchers, etc.) (Dotson 2011, p. 238).

4.5

Recognizing Strength in the Face of Structural Violence

Of course, it is essential to recognize that experiencing trauma or violence does not make one a powerless subject. And indeed, researchers risk exploiting their participants when they depict them as wholly passive victims of violence and oppression. Although an examination of systemic oppression is a vital aspect of much traumaand violence-related research, TVI approaches call on us not to allow these socialstructural considerations to obscure the strength of individuals and communities as they actively resist these conditions. A relatively simple strategy for assessing the inclusiveness of one’s interpretations would be to inquire about whether research participants would view the resulting analysis as accurate and fair. Researchers should reflect critically (or, where possible, ask trusted participants directly) about how well the lived experiences of participants were represented to a wider audience. Does the participant’s depiction in the research inspire pride or embarrassment? And whose voices are given authority in these depictions? Clark (2016b) challenges the pathologizing “shock and awe” discourse that often informs colonial portrayals of Indigenous oppression—particularly violence against Indigenous women and girls (see also Clark 2016a). In describing the circumstances surrounding a teenage girl’s disclosure of sexual abuse, she invites readers to ask, What are the intersecting axes of social location, power, and resistance in the life of this girl? How are these health needs framed or pathologized in the current health system?How are her experience and her coping framed by the current mental health, criminal justice, and child welfare system policies and programs? How is she resisting this? What are the daily lived experiences of violence that she is resisting? What strengths and resistance can you identify in her story? (Clark 2016a, p. 53).

Clark’s questions illuminate the interplay of injustice and resilience that inform Indigenous women’s and girls’ lived experiences of colonial and sexual violence. Notably, these questions resist the colonial discourse of “intervention, support, and saving” by foregrounding the individual’s own resilience, self-awareness, and

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experiential knowledge (Clark 2016b, p. 2). Clark goes on to discuss how the “witnessing practices” involved in safe disclosures of violence may be both healing and politically empowering: “we are telling in order not only to share about the violence, but also to change it” (Clark 2016a, p. 56). Here, the harms imposed by systemic oppressions are acknowledged, but not in a manner that dehumanizes the survivors as passive subjects—on the contrary, survivors are presented as agentic political actors whose own lived experiences of violence provides necessary insight into shaping a better, more just world. TVI research seeks to fulfill a similar principle of “strengths-based and capacity building approaches to support client coping and resilience” across various domains of research (PHAC 2018, para. 4). It aims to avoid the kinds of de-politicized narratives that may render social inclusion a process of normalization rather than social transformation. In this way, a TVI approach to socially inclusive research entails a systematic, collaborative approach to synthesizing the insights of researchers and participants and amplifying this knowledge so that others too might more agentically confront systems of violence. For social inclusion to be realized in all aspects of research, a commitment to safe, collaborative, empowering understandings of trauma and violence is essential. The following section explores some of the ways that these commitments might be put into practice.

5

Applying Trauma- and Violence-Informed Principles to Research

This section explores how the four TVI principles could be applied in research. In some ways, best practices identified for using TVI approaches are directly applicable to research with participants. For instance, practitioners and researchers may benefit from useful tips such as conveying non-judgmental responses and acknowledging historical and structural violence (Ponic et al. 2016). In other ways, a more thorough exploration of TVI principles can help to illuminate what TVI approaches might look like when applied in a research context. The focus here will be on providing examples to concertize and provoke thought on how to promote social inclusion through TVI research. However, it is important to note that there is not just one exclusive way that TVI principles can be implemented. Indeed, TVI principles could be built into a variety of research methods sharing similar orientations to social inclusion such as community-based participatory research and participatory methodologies (Todahl et al. 2017; Faherty and Doubeni 2015; Danielson and Saxena 2019; Bowen and Murshid 2016).

5.1

Understand Trauma and Violence and Their Impacts on Peoples’ Lives and Behaviors

An understanding of trauma and violence, and their impacts, is not something that can be easily gained or maintained—it is an ongoing process of learning, particularly

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as experiences of trauma and violence may look different for individuals in certain contexts (e.g., sex trade workers, child soldiers, Indigenous residential school survivors). Aspects of the learning process include (1) situating your own knowledge, (2) recognizing the knowledge already shared, (3) engaging in training, and (4), when possible, building relationships among the research team, community partners, and research participants. First, researchers can situate their knowledge by questioning what forms of knowledge and experiences they have been exposed to, and which they have not. Clark et al. (2010, p. 244) promote a series of questions that researchers can use to locate themselves including the following: “Who am I? (class, race, gender, other axis of socio-economic location) How does this change in the various contexts I move between? Who am I within my work? My research?”. When researchers recognize their positionality, in addition to the types of knowledge and experiences centered in their education, it brings into focus the potential limitations of their understanding, especially as it relates to structural violence and histories of oppression. Second, it is necessary to recognize the research that has already been done, especially when engaging in research on marginalized communities. Though some forms of research continue to exclude knowledge from marginalized groups, there is a rich array and diversity of material on trauma and violence in health and social science literature, personal memoirs, documentaries, oral histories, and more that researchers can engage with to develop their learning. It can furthermore guide their research development as it provokes an awareness of what has already been studied and where there has been an identified need for further work. Third, training could be a useful way to promote an understanding of trauma and violence. Ideally, training should be offered at all levels of research engagement, including training for funders and ethics boards. For researchers, knowledge about trauma and violence can be incorporated into existing research training. One example of training from the Faculty of Social Work at the University of New Hampshire involved a class session on TVI care and a small group exercise where student groups identified TVI questions for research with women who may have experienced trauma (Shannon et al. 2012). Future work could explore developing evidence-informed core competencies for TVI research. When researchers seek to examine a topic in a specific community, it may also be necessary to pay community consultants for training with regard to the contextual and structural factors that shape the lives of individuals from that community. Some community groups have already established protocols and training for researchers. For instance, Canadian sexual assault centers often provide intersectional resources and training on common myths around sexual assault (e.g., that if an individual experienced sexual assault, they would be able to remember all the facts in the proper order) and how to respond to sudden or unexpected disclosures of sexual assault. Other times, communities may hold training on ethical research standards in their community, often informed by past harmful research engagements. For instance, the Siem Smun’eem Indigenous Child Welfare Research Network works with local Indigenous communities and researchers in British Columbia, Canada, to develop research trainings that are locally and culturally specific (Musayett et al. 2014). One such training incorporated the Coast Salish cultural practice of basket

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weaving in order to more deeply understand the research ethics and methodologies practiced by Coast Salish communities. Finally, an understanding of trauma and violence can be encouraged by facilitating relationships among researchers, community members, and participants. Being prepared to engage participants in dialogue about their needs in the research process (e.g., regarding a research instrument, interview item, honorarium) is essential, especially in complicated or emergent situations. Meaningful engagement with participants often involves building relationships, especially in communities where research has typically been extractive. For instance, Nickels and Knotsch (2011, p.63) highlight the necessity of spending informal time with Inuit research partners and noted that “Inuit see research as relationship development, where trust is built over time.” Relationship building facilitates the ongoing sharing of information and an understanding of the circumstances and desires of the local community. Socially inclusive collaborations with community members, when possible, also help bring TVI principles to life. Since community members have a unique standpoint due to their “historically shared, groupbased experiences” (Collins 1997, p.375), their insights can not only help to ensure that extractive and harmful research practices are avoided; they can also enrich the quality of the project itself, challenging researchers to develop more truthful, useful understandings of the issues they are investigating.

5.2

Create Emotionally and Physically Safe Environments

Emotionally and physically safe environments need to be fostered for the researcher and for anyone that the researcher comes in contact with through the course of their work. Such environments should facilitate relationship building, confidentiality, accessibility, and inclusivity (e.g., signs identifying spaces as “safe” and/or 2SLGBTQ+ friendly). When collecting data from children who were commercially sexually exploited, for instance, one research team consulted with adult survivors to identify TVI approaches to data collection including ensuring that survivors could sit near the door to assure them that they could escape if they needed and building in stopping points to provide survivors with a break (Rothman et al. 2018). While general guidelines can be helpful, it is best to speak to individuals about what makes an emotionally and physically safe environment for them. Rather than assuming that safe means the same thing to all individuals, researchers might incorporate intake survey/interview items inquiring about what sounds, sights, or smells participants find pleasant and which should be avoided. One researcher shared their experience of how, even with the best intentions, efforts to promote safety may produce unintended negative consequences: Years ago, I invited 4 year olds to a lab to participate in a research study in a room outfitted with child size furniture and decorations and a camera that allowed a parent in an adjacent room to watch the child in the lab room. As soon as one 4 year old entered, she had an extreme reaction, running to the corner and biting herself. The child’s guardian turned out to be an aunt who finally realized that the room resembled the child protective services office where the child had been interviewed about sexual abuse (Becker Blease 2017, pp. 135 6).

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As this researcher found, what may seem like a best practice approach to accommodate participants could in practice be distressing. In comparison to assuming what will be perceived as safe, it is best to engage with participants and, as much as possible, enable choice (e.g., providing one room with child furniture and another without it, offering to conduct an interview in a mosque or the individual’s home). Working with participants to create an emotionally and physically safe environment also allows the participants to control certain aspects of the research and communicates that the investigator is respectful of the participant’s wishes. Of course, not all researchers or organizations will have the funding, time, or space to provide these options. These considerations could be built into funding proposals but in the case that it is not possible, general safety protocols for supporting distressed individuals might include culturally appropriate counseling services on-site or a list of community-based resources for the participant to access. Implementing these sorts of emotional and physical safety measures in the research setting can play an important role in minimizing the risk that research may trigger re-traumatization. When individuals are consulted and know they can enter a space that feels safe to them, it enriches their sense of inclusion and contribution to the research process. In addition to safety in the physical space, it is also necessary to consider the safety of the research design and data collection process. For example, consider the Makilirit (“Rise Up”) research project that was undertaken by Morris in collaboration with the Pauktuutit Inuit Women of Canada organization (2016). Morris shares how her collaboration conducting research with Pauktuutit led to a more culturally safe study. Morris had a pre-existing relationship with the organization and approached them to ask what research they felt would be beneficial to their community. Pauktuutit decided on the research project which was a study on Inuit youth and violence prevention through social media. Once funding was received, Pauktuutit, which is very experienced with research and research partnership, set up an advisory committee of Inuit and people working in Inuit agencies. The original research design was to conduct individual interviews with Inuit youth where they would be asked about violence by a non-Inuk researcher. The Advisory Board and partners shared how Inuit are continually reliving trauma and how a focus on trauma in the interview could lead to feelings of despair. They suggested a research design where the focus would be on collecting information in a culturally safe and supported manner. As such, Morris worked with Inuit consultation to completely redesign the research so that it involved a broader online survey about social media use that would be reviewed for cultural safety and then “a violence prevention focus group of Inuit aged 18 to 25, which would be led by Inuit facilitators, held at an Inuit agency, and co-developed by counselors from Mamisarvik Healing Centre, an Inuitspecific treatment centre” (Morris 2016, p. 115). Morris’ example shares the need to consider safety throughout the research process and promotes being creative and flexible in working to ensure safety with the communities involved. Researchers are encouraged to think beyond traditional interview formats to explore how other means of data collection may be more culturally safe and accessible for different groups of people. For instance, bodymapping is a means of data collection where “participants create individual body

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maps on large sheets of paper using drawing, painting, or other media to visually represent aspects of their lives, their bodies, and the world they live in” (Lys 2018, p. 2). Body-mapping was employed by Lys et al. (2018) in a study of how femaleidentifying youth in the Northwest Territories, Canada, cope with mental health issues. It has been found to be a strengths-based approach to promote trust, enable voice in research (especially for youth), and reduce verbal communication barriers (Lys et al. 2018).

5.3

Foster Opportunities for Choice, Collaboration, and Connection

Fostering opportunities for choice, collaboration, and connection during research can occur in a multitude of ways. One of the most discussed considerations regarding choice when it comes to research is that of consent. TVI approaches supplement the already strong and nuanced work occurring with regard to ensuring consent by emphasizing how trauma and violence operate at the individual level and the structural level to impact research participants and how they perceive or enact their choice. Individuals who have experienced homelessness, for instance, may be “accustomed to accommodating themselves to non-choice situations in order to survive” (Paradis 2009, p.10). An understanding of trauma and violence rightfully complicates consent by highlighting how trauma and violence may impact the decision to partake in research, or not. TVI approaches take an active role in mitigating the impact that trauma and violence may have on how a person experiences choice and consent in the research process. As opposed to consent being merely received through a signed form at the beginning of research (sometimes in language that is difficult for participants to understand), consent can be built into the entire process from beginning to end. Additionally, consent can be given on certain but not all aspects of the research, thus enabling choice in what aspects of the research the participant feels comfortable engaging in. For instance, Meyer (2018) recommends the use of a “tiered” consent approach where participants can choose how much of their data can be used (e.g., only quantitative, only certain topics) and through which means it can be shared. Questions that could be asked to enable ongoing choice in the consent process include: • What would be helpful for me to know in talking with you? Some individuals do not want to discuss a particular event or topic and we can definitely avoid that if you let me know. • When you do not want to answer a question, how will you let me know? • Would you like me to contact you in a couple days to see if you have anything further to add or if you wanted me to not include a piece we discussed in the research? In asking these questions and engaging with research participants, it will also be important to reflect on and attempt to address the power differences between

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researcher and participant. Doing so can involve highlighting that participants control whether the interview continues and which questions they would like to answer and that their decisions will not impact their access to any services or resources that were promised for participation (e.g., honorarium). Importantly, consent should also continue past the initial data collection phase into the dissemination of research results. There may be times where researchers and the communities involved in the research have differing opinions regarding the results and if or how they should be communicated. Often, harmful research has been published without consultation resulting in communities having “no opportunity to correct misinformation or challenge ethno-centric and racist interpretations” (Royal Commission on Aboriginal Peoples 1996, p. 294). One proposed solution to address the possibility of such issues in participatory research is the creation of a Code of Research Ethics that promotes the sharing of power and control in dissemination of results. Macaulay et al. (1998), p. 107) provide an example of a piece regarding dissemination of results that was included in a broader Code of Research Ethics developed in partnership with the Native Mohawk community of Kahnawake in Canada: No partner can veto a communication. In the case of disagreement, the partner who disagrees must be invited to communicate their own interpretation of the data as an addition to the main communication, be it oral or written. All partners agree to withhold information if the alternative interpretation cannot be added and distributed at the same time, providing the disagreeing partners do not unduly delay the distribution process.

Agreements such as this one can promote the sharing of power between researchers and communities, in addition to protecting against re-traumatization.

5.4

Provide a Strengths-Based and Capacity-Building Approach to Support Coping and Resilience

One way to acknowledge strengths in the community and to build capacity for individuals and communities is to actively involve participants in the research process. In the form of providing trauma-informed care, this involves including survivors in the development, implementation, and evaluation of programs (Bloom 2013). Meaningfully including the communities being researched has been identified as an important aspect of TVI research as well (Todahl et al. 2017). Two Canadian projects that have engaged in promising practices for including individuals with lived experience are the Trans PULSE Project and the Women, Homelessness and Community-Based Participatory Research Project. The Trans PULSE Project was originally developed in Ontario, Canada, as a community-based research project focusing on the needs of transgender communities, including how social exclusion of transgender people impacts their access, or lack of access, to services. In ‘Community Control’ in CBPR: Challenges Experi enced and Questions Raised from the Trans PULSE Project, the research team offers valuable insights into building capacity and enabling social inclusion through

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community control over research (Travers et al. 2013). A focus of the project was community capacity building which was prioritized based on: a desire for community members to have the opportunity to learn to use more formal forms of knowledge production in their social action research, and to ensure that when the project ended, tangible skills would be left behind in the community to be put toward further research and social change. (Travers et al. 2013, p. 410).

In order to facilitate this capacity building, the project members developed an Investigators’ Committee with individuals from different academic and organizational affiliations and a mandate “that trans community investigators will always constitute a majority of the Investigators’ Committee, and must be present in majority numbers (50% plus one) for major project decisions” (Travers et al. 2013, p. 409). In addition to the Investigators’ Committee, Trans PULSE established a 16-member Community Engagement Team to represent a greater diversity of experiences and ensure further community input. That team undertook a number of activities including “guidance into the development of the project’s survey tools and interview guides, access to relevant geographically dispersed trans networks, strategic advice on project outreach and promotion, and direction and guidance on a ‘knowledge to action’ strategy for social change” (Travers et al. 2013, p. 409). Another research project that centered individuals with lived experience is the Women, Homelessness and Community-Based Participatory Research Project (Paradis and Mosher 2012). This project sought to create an inventory of community-based participatory research (CBPR) projects focused on women and homelessness and to create a conference bringing together women who participated in these projects. It offered a unique opportunity to evaluate research, specifically CBPR, from the perspective of participants with lived experience of homelessness and to strategize on how CBPR could be made more inclusive and strengths-based. The conference was entitled All Our Sisters National Forum on Housing and Safe Communities for Women. In planning the conference, the researchers established a National Advisory Board including women facing homelessness, whom they actively recruited, and a Lived Experience Advisory Committee. Then, in order to make the conference more inclusive, they purposively acknowledged the expertise of women facing homelessness in the conference materials and invited women with lived experience to participate in the conference. To offset the cost of conference admission, at least 100 of the 500 attendees who had lived experience and had a low income received free admission. Their report about the project—Take the Story, Take the Needs, and DO Something—offers a number of illuminating insights into equitable and inclusive research practices as identified by participants (Paradis and Mosher 2012). Both of these projects provide ideas for integrating principles of strengths-based support and capacity building with a socially inclusive research paradigm. Individuals are not written about by people outside of the community; community members instead partake in forming and guiding the research that affects them. When capacity is built among community members and research participants so that they become emerging researchers, social inclusion is achieved in both a material and

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non-material manner. Materially, emerging researchers gain access to education and potentially employment through the research study which may in turn enable further opportunities for them. Non-materially, emerging researchers may build formal and informal relationships in the research community and a level of expertise that includes them in spaces and with opportunities from which they may have previously been excluded.

5.5

Considering TVI Research More Broadly

Applying TVI principles to research is a useful way to begin thinking through what an understanding of trauma and violence may entail for research practices and how it can enable social inclusion. The previous section focused on the four TVI principles and some of the ways they may impact the research process (e.g., training, consent). Table 1 Promoting social inclusion by applying trauma and violence informed approaches to the research process Aspect of research Research systems (e.g., university, government) and funders

Research team

Examples of trauma and violence informed research approaches that promote social inclusion • Offer training about trauma and violence and how research systems have contributed to historical and ongoing experiences of trauma and violence to all individuals in the affiliated institution. Training should include cultural and historical specifics for any population group which may be a part of the research. • Ensure research funding is flexible enough to accommodate changes needed to enhance research participant inclusion, safety, and needs during the research process. • Provide time for relationship building and community partnership, including developmental funding for the project proposal so it can be developed from the outset in partnership with community organizations. • Consider hiring and training peer researchers, while ensuring confidentiality for research participants. • Include individuals who bring knowledge from a variety of different social locations, recognizing that every community is diverse and requires an intersectional approach. • Address inequities in power and decision making. • Conduct training on TVI approaches. • Engage in reflexivity about the social location of the researcher(s) and their own biases. • Provide capacity building on emotional regulation skills (e.g., breathing exercises). • Recognize that vicarious trauma and secondary traumatic stress may occur among researchers, and offer peer support and debriefing. (continued)

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Table 1 (continued) Aspect of research Research question

Data collection and analysis

Examples of trauma and violence informed research approaches that promote social inclusion • Partner with community members to determine a question arising from a need in the community. • Contemplate on who will benefit from this question and who may be harmed. • Consider both individual trauma and systemic/structural trauma. • Involve those with lived experience to identify relevant areas of inquiry and to assess if the results resonate with their knowledge. Knowledge synthesis • Include various forms of knowledge (e.g., lived experience, gray literature). • Explore and identify if cited resources include material that is exclusionary and contains any potential biases (e.g., consider the motivation of government documents). • Identify what perspectives may be missing. Work with participants (e.g., survey, interview, focus group) • Use clear language about the purpose of the study and the content covered in recruitment materials. • Treat consent as a process that is ongoing throughout the work. • Work with participants to build an accessible environment that feels physically and emotionally safe for them. • Offer resources and activities that participants may use to ground themselves (e.g., coloring books, being in nature, cooking). • Consider supports that participants may need in order to participate, such as childcare, culturally appropriate food, bus tickets, etc. • Conduct a “trauma walk through” to consider what the research process will look like for a participant through a trauma lens (Levine et al. 2020). • Pilot the interview or survey protocol and process with members of the communities that will be participating in the research. • Recognize that participants may miss or forget appointments due to the impacts of trauma and violence and the socioeconomic conditions of their lives. • Engage in a soft start with time for grounding exercises and a check in. • Reflect the language used and preferred by the participant in any interview contexts. • Build in times for breaks from topics if the participant chooses. • Do not touch any research participant for any reason without their explicit consent. • Recognize participant strength and resilience. (continued)

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Table 1 (continued) Aspect of research

Communication of results

Examples of trauma and violence informed research approaches that promote social inclusion • Engage participants in determining what information is safe for them to share and how it could best be de identified. • Offer resources for support that cater to different communities. • Follow up with participants, if they identify it is okay to do so, to ask if they have any concerns or further reflections. • Most of all, throughout the process, communicate respect for participants through tone of voice, mannerisms, and by using language familiar to the participant. • Collaborate with communities in the dissemination of results and build in protocols to allow for the right of communities to contest findings and how they are presented. • Utilize the means of research dissemination participants and communities find most valuable. • Offer the information through a variety of mechanisms if appropriate (e.g., news media, community radio, social media, policy brief, community feast, peer reviewed journal). • Focus on resiliency, strength, and potential solutions rather than simply documenting problems and deficits. • Use accessible and inclusive language. • Speak to individuals with lived experience to ascertain the language most appropriate for that community. • Be mindful about how participants may wish to be described. • Include content warnings and resources for support in your presentation of the results.

A more thorough application of TVI principles will require joining these principles in consideration of what it will entail for a specific research project. The chart below offers some general guidance to aid in that exploration (Table 1).

6

Conclusion and Future Directions

The aim of this chapter has been threefold: (1) increase awareness of how trauma and violence impacts research, (2) show how TVI research could promote social inclusion, and (3) share examples of and inspire ideas for inclusive TVI research. It started by sharing information about trauma and violence and how TVI approaches emerged out of the necessity to better support individuals who have experienced trauma and violence. The unique contribution of TVI approaches is their conceptualization of trauma and violence as phenomena shaped by individual, interactional, and social

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structural processes. TVI principles assert the necessity of understanding trauma and violence and their impacts; creating emotionally and physically safe environments; fostering opportunities for choice, collaboration, and connection; and providing a strengths-based and capacity-building approach. As such, an aspiration of TVI approaches to research is not only to avoid re-traumatizing participants but also to promote safe and empowering forms of social inclusion, especially for groups that are traditionally marginalized in research. This chapter acknowledges the complexities of promoting social inclusion, including practical barriers and questions regarding who is included and how, and offers some reasons why an awareness of trauma and violence can aid researchers in responding to these complexities. It also emphasizes the necessity of an ongoing attentiveness to social barriers, vicarious trauma and secondary traumatic stress, and the misrepresentation of participants’ voices and experiences. In the final section, this chapter explores some of the ways that TVI approaches could be enacted in designing, implementing, and disseminating research. TVI approaches are broadly applicable to different research populations and methodologies, but due to the pervasiveness of structural violence within society, they carry unique benefits to working with participants from marginalized communities. Given the practical nature of a TVI research approach, future directions for this framework should continue to be guided by voices of those most directly impacted by the research: the research participants. This priority can go hand-in-hand with institutional-level changes that are also relevant to the research process like changes in training and research ethics review boards. For TVI approaches to more comprehensively address the kinds of structural violence discussed in this chapter, they must influence a shift in orientation to how research is practiced and whose interests it serves. For instance, critical questions should address how funding agencies can encourage partnerships between researchers and local communities and how these partnerships can generate projects that respond to the specific social issues identified by people in the community. Future research could facilitate this shift by exploring and sharing best practices in TVI research, in addition to challenges to implementing TVI approaches and potential solutions. Investigators, participants, and stakeholders alike all have a crucial role to play in ensuring that research not only exposes the truth of its subject matter but also contributes to the betterment of society. A socially inclusive approach to research that is informed by the realities of trauma and violence is well positioned to meet this important challenge.

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Researchers with an Intellectual Disability Transforming Research Methods from the Inside Out

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Brigit Mirfin-Veitch, Patsie Frawley, and Paul Milner

Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Inclusive Research and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Article 19 Project: Inclusive Research with People with Complex Disabilities . . . . . . The Mean As! Project: Pushing the Boundaries of Inclusive Research and Social Inclusion Still Further . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Choosing Your Researcher: Who to Tell Your Story to . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Choosing Your Research Method: How to Tell Your Story . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Analysis from the Inside Out . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Committing to Research “by” People with Intellectual Disabilities . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

People with intellectual disabilities have begun to be involved in research in roles other than participant through research framed as “Inclusive Research”. This approach to researching “with” people with intellectual disabilities responds to the dictum of the self-advocacy movement, “nothing about us without us.” The trajectory of Inclusive Research, like the emancipatory aims of research framed by the Social Model of Disability, is for people with intellectual disabilities to move from B. Mirfin Veitch (*) Donald Beasley Institute, Dunedin, New Zealand Centre for Postgraduate Nursing Studies, University of Otago, Christchurch, New Zealand e mail: [email protected] P. Frawley Te Kura Toi Tangata School of Education, University of Waikato, Hamilton, New Zealand e mail: [email protected] P. Milner Donald Beasley Institute, Dunedin, New Zealand e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_22

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those who are researched, to being researchers themselves. In this role people with intellectual disabilities choose what research is done, how it is done, and with whom research partnerships are made. This chapter explores how inclusive research has transformed ideas about research, intellectual disability, and social inclusion. Keywords

Intellectual disability · Inclusive research · Responsive methodologies · Social inclusion · Citizenship

1

Introduction The core problem of social inclusion seems to be the conflict between the lived reality of people with intellectual disability and the normative ethical frameworks that dominate our society. Such frameworks come to practical expression in the roles that are available in society. These roles are predefined through upbringing and education and reflect primarily the views and power relationships of the existing intellectual and material order. (Meininger 2010, p. 192)

In broad terms, spatial and social segregation has been the master narrative of intellectual disability. As Meininger (2010) notes, the social roles that are available to people are framed by normative views of intellectual and social capacity that people with an intellectual disability do not meet. Research about people with intellectual disabilities historically was framed by a medical paradigm and was primarily interested in classifying who was and who was not seen to be intellectually capable members of society. Such research was underpinned by ideas like eugenics that determined that people with intellectual disability, labeled in these times as mentally retarded, were “palpably unfit to breed” (AJHR 1911). Policy based on eugenics was also common across the Western world and led to segregated lives for many people with intellectual disabilities in institutions that were physically and socially separated from the rest of society. Deemed scientific, this kind of research dominated disability research and influenced policy and practice for over a century, ostensibly providing the “evidence” for the ongoing social exclusion of people with intellectual disability. Those who were assigned the labels of the time that classified them in these ways were outside, or at best at the bottom of the intellectual and material order of society referred to by Meininger (2010). In 2020, while giving his testimony during a contextual hearing as part of the New Zealand Royal Commission of Inquiry into Abuse in Care, Sir Robert Martin, a former resident of institutions for disabled people in NZ remarked, My life in institutions meant I personally had nothing, no one to call my own and I learnt how I was a nobody, that my life didn’t really matter. I also learnt that I was somehow actually being punished for who I was. I was one of the lucky ones, I got out. I went on to build a good life for myself. Now I have a life packed full of books, music, sports. . .. . . and I have a person to call my own. My wife Lynda.” (Martin 2019)

Sir Robert’s testimony is a salient reminder that social exclusion has long framed how people with intellectual disabilities see themselves and the value of their lives. Their stories were rarely told outside the walls of institutions unless they were told

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about them through the scientific research that defined them, and within the context of the social policies that determined them as “other,” different and outside the social order of society. Much has been written about the institutionalization and deinstitutionalization of people with intellectual disabilities. Life stories have been used as a research tool within some of this research (Manning 2008) providing an often raw and deeply personal account of the institutional life experience of people with intellectual disabilities. Dorothy Atkinson, a Social Work researcher from the UK and ally of people with intellectual disabilities who had experienced institutionalization, was one of the first academic researchers to co-research with people with intellectual disabilities using a life history approach (Atkinson et al. 1997). Atkinson’s work, particularly with women with intellectual disabilities, was recorded in books and journals, and ensured that they were seen as credible researchers about their own lives, capable of telling and documenting their own stories, their own way (Atkinson et al. 2000). The methods used in this research and the stories produced, transformed understandings of intellectual disability from the “inside” out. Previously how intellectual disability was understood was informed from the outside by outsiders including the medical profession and scientific researchers who were looking “at” the lives of people with intellectual disabilities as subjects of their work. Atkinson’s work has helped to frame and inform the way research has been done “with” and “by” (Milner and Frawley 2019) people with intellectual disabilities over time and set a high bar about what inclusion looks like in research. According to writer and social activist Chimamanda Nggozi Adichie (cited in Gill 2015), real power is not just the ability to tell the story of another person, but to make it the definitive story of that person. When writing about the sexual citizenship of people with intellectual disabilities, Michael Gill further drew on Adichie’s work to caution that previous research “about” people with intellectual disabilities has created a “single story” of intellectual disability (Gill 2015). This story of mental incapacity, moral transgression, difference, and being always “other” has dominated the lives of people with intellectual disabilities and has almost exclusively been written by those who exercise power over them. Self-authoring in the tradition of autoethnographic and narrative research has created a way for people with intellectual disability to challenge this meta-narrative of who they are and where they fit into society (Meininger 2010). The research draw on in this chapter, focusses on issues of inclusion and social citizenship of people with intellectual disabilities where they tell their experiences Being communities, families, intimate relationships; sometimes as part of society and sometimes excluded from society within it. Through the research and the intentionality of inclusive practices embedded, it is people with an intellectual disability who develop and frame the knowledge and the academic researchers who help to translate it.

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Inclusive Research and Social Inclusion

Meininger (2010, p. 198), in writing about the place of narrative research for exploring intellectual disability and social inclusion notes, “people’s stories can be connected with one another if there is room to allow the stories to be told and even to

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listen to them. ‘Space’ is needed.” Through narrative research, the individual stories of people with intellectual disabilities and their lived experiences of oppression, segregation, and rights abuses have been connected with others. Collections of stories have been co-developed in research and writing projects that created a space for new understandings of intellectual disability to be formed and used. The stories co-developed with people with intellectual disabilities have included stories about a range of important shared experiences including institutionalization and deinstitutionalization (Johnson 1998; Atkinson et al. 1997), gender (Traustadottir and Johnson 2000; O’Shea and Frawley 2020), violence and abuse (Woodlock 2014), and self-advocacy (Frawley et al. 2013; Traustadóttir 2006). What is common across this body of work is that it prioritizes the voices of people with intellectual disability using methods that leave as much as possible to the stories as told by people with intellectual disabilities. It is framed as research “with” people with intellectual disabilities about issues that matter “to” people with intellectual disabilities themselves. In this way, it reflects the principles of inclusive research as outlined by Jan Walmsley and Kelley Johnson in their text that provided the seminal methodological framework for their research approach (Walmsley and Johnson 2003). These principles are: • That the research is conducted to further their interests and address issues which matter to them and ultimately lead to improved lives for them. • That the research is collaborative, involving people with learning disabilities in the process of doing the research and accessing and representing their views and experiences. • That people with learning disabilities exert some control over process and outcomes and are treated with respect by the research community. • That the research question, process, and reports are accessible to people with learning disabilities (p. 64). The bar set by Walmsley and Johnson has encouraged research partnerships that have developed over time between researchers with intellectual disabilities and allied academic researchers. Melanie Nind (2017, 2020) reminds us that “knowledge communities” have developed from these partnerships where the collective ideas developed from inclusive research have been able to focus differently on the social issues that matter to people with intellectual disability. Drawing on Friere’s ideas of praxis, where researchers engage in “reflection and action upon the world in order to transform it” (Freire 1972, p. 33), inclusive research both through its methods and the principles that underpin inclusive research approaches, is inherently tethered to social inclusion. It creates the “spaces” that Meininger (2010, p. 199) suggests “. . . [can transform] thinking, speaking and acting . . . that invokes new meanings and a new way of acting in life and society by all those involved.” How inclusive research and social inclusion work together is best understood by looking at the ways research has been done using these approaches, and the outcomes of this research for people with intellectual disabilities. Nind (2011, p. 354) suggests that for people with intellectual disability doing research is “more centrally

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about the politics of inclusion.” Others who have written about inclusive research note that while academics can aim to co-create knowledge from inclusive research, academic researcher allies and researchers with intellectual disabilities are likely to have “shared and distinct” goals, interests, and expected outcomes from inclusive research (Bigby et al. 2014). Reflecting back on ideas of praxis and the first principle of inclusive research put by Johnson and Walmsley (2003), and the body of inclusive research, it is clear that transforming the social attitudes and ideas that can progress the rights of people with disability to be fully included in society and their communities is at the center of truly inclusive research. In the following sections, we draw on research undertaken “with” and “by” people with intellectual disabilities in New Zealand that has created space(s) for people with intellectual disabilities to self-author, tell, co-develop, and share their transformative ideas, and in doing so has also shaped policies and practices designed to promote social inclusion.

3

The Article 19 Project: Inclusive Research with People with Complex Disabilities

As Baron’s Paradox reminds us, the people who most need to have their stories told are often those least able to tell them (Baron 1991, p. 103). A failure to capture and learn from those whose life experiences are presumed too difficult to capture using conventional research methods represents a serious omission within disability research. Furthermore, the presumption that people with complex disabilities lack the capacity to be involved in complicated research tasks means that their expertise has also been overlooked in most attempts to develop a research method that is inclusive of them (Milner and Frawley 2019). In 2011, 3 years after Aotearoa New Zealand signed and ratified the United Nations Convention on the Rights of Persons with Disabilities, a disability support service commissioned the Donald Beasley Institute to conduct a research project focused on the day-to-day lived experiences of people with complex disabilities. Exemplifying the first of Walmsley and Johnson’s (2003) core principles of inclusive research, the aim of the Article 19 Project emerged from ongoing conversations between the disability support service, and some of the disabled people who utilized their supports. Specifically, both disabled people and the service were concerned that those most weakly connected to their community were also those typically denied the opportunity to document their exclusion. There was mutual agreement that until these unique narratives were given the same level of primacy as other more accessible narratives, it would be impossible to make an equitable assessment of whether “full inclusion” and “participation in the community” (Article 19, UNCRPD) was being experienced by (all) disabled New Zealanders. Assisting people with complex disabilities to tell their own stories of social inclusion or exclusion in their own way presented us with a number of methodological challenges. A particular test was finding a way to co-construct subjectively authentic narratives in partnership with people who do not always communicate in

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ways that others understand, accept, or value. Our answer was to circumnavigate the conventional research practice of stating a fixed method prior to commencing the project, instead assisting each person to direct and design their own “bespoke” research method. In encouraging the research participants to take control of the research process, our project aligned with the second of Walmsley and Johnson’s (2003) inclusive research principles. It is important to note that we did provide an initial methodological “starting place” for the participants by identifying a range of ways that they could tell their story including, for example, via: semi-structured individual and key informant interviews, photovoice, a quality of life scale, visual “friendship field” diagrams, Time-in-Place maps that generated three-dimensional tracings of community presence, the opportunity to include personal archives, or a mixture of these approaches (Milner and Mirfin-Veitch 2012). The set of methods outlined above were intended to be a point of departure rather than a methodological destination. Participants knew that they could construct their narrative in their own way, and retained the freedom to adopt, adapt, or reject any measure as a way of initiating or developing the conversations they felt they needed to have. For the want of a descriptor, we called the approach an Individually Responsive Method (IRM) (Milner and Frawley 2019). Via 13 individualized methods, disabled story tellers (participants) guided their particular story gatherer (researcher) to the cutting edge of contemporary qualitative methods to achieve an approach that could be described as inclusive (Milner and Frawley 2019). Our IRM approach was born out of a desire to “do better” at including people with complex disabilities in research. It enabled us to learn more about the methodological elements the participants in the Article 19 study felt responded to their unique bodies, communication styles, motivations, or indeed the landscapes within which their stories were told. Furthermore, stepping into the relational space of the project without the comfort or constraint of a fixed method encouraged both partners to explore all the creative possibilities of storytelling for the purposes of research. One of the storytellers, for example, had a lexicon of approximately nine words with which to craft his story. At some point in the writing collaboration, it was recognized that most of these words were signifiers of place, words that he used to describe his “migrations” around the community. This discovery led to a process of analysis that unpacked and articulated the subjective meaning of the storyteller’s vocabulary. The outcome of this intense focus on the storyteller’s own words was that it became possible to illuminate the various ways he experienced the private spaces of his family as “home” and his residential service as “over there.” In doing so, the storyteller used a way of talking back to the juxtaposed ways in which he was socially known in those spaces. Most importantly, his inclusive research experience enabled him to articulate his deep sense of social inclusion at “home” and social exclusion while “over there” in a way he had not previously been able. In another example, a different storyteller facilitated an understanding of his sense of personhood by guiding us around the landscapes of his community. For this person, walking methods (Anderson 2004; Moles 2008) was the “best fit” modality for him as a man of the land who was social, and valued relating and relationships,

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but who used few words. Through getting in step with him walking around his farm, And meeting the range of people who engaged with him on his farm, we could observe how he actually experienced social inclusion. Our subsequent reflections on the importance of the places and spaces he visited and engaged with were that they connected him with people in those spaces. This enabled us to highlight through this research the importance of the more subtle social experiences of being “in” place for people with intellectual disabilities. In both of the examples given here the key messages about social inclusion as “told” by people with complex disability through their stories told their way. These became important outcomes of the research, and both were later used to inform policy and steer practice within the disability service, thus aligning with Walmsley and Johnson’s (2003) third principle of inclusive research.

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The Mean As! Project: Pushing the Boundaries of Inclusive Research and Social Inclusion Still Further

Encouraged by the ongoing interests of a group of people with intellectual disabilities in their sexuality rights, in 2017 we were again drawn to an opportunity to research “with” people with intellectual disabilities about an issue that mattered to them. Through this the Mean As! Project was born. While the Article 19 Project sought to dismantle the power relationship that underwrote method, in the Mean As! Project participants took charge of both how they told their story and who they told it to. People with intellectual disabilities were also researchers in this study. A group formed as the research group and used their capability as “insider researchers” to read, listen to, and analyze what they felt the stories meant and the key messages in the stories. In taking this approach we hoped to move closer to the aim of achieving inclusive research “by” people with intellectual disabilities (Milner and Frawley 2019). The Mean As! Project originated from a series of workshops delivered as a way of introducing New Zealander’s with intellectual disabilities to the Sexual Lives and Respectful Relationships (SL&RR) peer education program (https://www.slrr.com. au/). SL&RR is founded on a set of life stories told by Australians with intellectual disabilities and engaged by people with intellectual disabilities in a program ran by people with intellectual disabilities. The stories and the peer education approach go well beyond the rules-based sex education people with intellectual disabilities are used to (Frawley and O’Shea 2020; Milner et al. 2019).

4.1

Choosing Your Researcher: Who to Tell Your Story to

Recognizing that storytelling has the power to invite a moral conversation, the people with intellectual disabilities who attended the New Zealand workshops decided that they would also like to create their own culturally meaningful collection of stories and use these to transform how both disability and mainstream services understood and responded to their sexuality. Therefore, we set about the task of

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pursuing the funding to achieve this aim, ensuring that the approach we took was inclusive by maintaining the partnership with the group of people with intellectual disabilities who conceived the idea. Throughout the two years of the project there was ongoing revision and adaptation to the method which was led primarily, by this group. As noted above, the Mean As! Project provided an opportunity to challenge ourselves to provide an inclusive research experience. Extending on the methodological inclusivity on offer in the Article 19 Project, typical research customs were again inverted, this time in relation to the recruitment process. In Mean As! potential storytellers recruited the story gatherer they wanted to help them to tell it. This was facilitated by offering potential storytellers a range of very different story gatherers (researchers), all of whom posted short video vignettes of themselves on a project YouTube page. In the clips, story gatherers introduced themselves and their path to the project leaving a trail of cues like their age, ethnicity, gender identity, and sexuality. It became very clear that potential storytellers were alert to these cues and chose their story gatherer according to who “spoke to them.” Māori storytellers gravitated to Māori story gatherers. People coming out as LGBT chose researchers who identified as LGBT. Musicians chose musicians. Those struggling with their mental health identified the empathetic ear of a young researcher who also happened to be a clinical psychologist, and the more laconic and practical chose the most patient and affirming of listeners.

4.2

Choosing Your Research Method: How to Tell Your Story

Once connected, and consistent with IRM approach, storytellers and story gatherers discussed how to assemble the raw materials required for their narrative, including introducing six different methodological approaches as a possible starting point. These approaches included; just sitting and talking; walking and talking; the sharing of personal archives like photos, music, or other artifacts that helped people talk about or inform others about themselves; exploring creative ways to tell their story like letter writing; and drawing on Māori imagery and mythical storytelling. Consistent with IRM, these methods were framed as a point of departure intended to create a space for unanticipated ways that someone might choose to tell and (co) construct their story. As a result, no two story-gathering processes were the same. The Mean As! library includes stories full of color and surprise, and vocabularies and modes of storytelling that are authentic and meaningful to the individuals who chose to share their stories. Included in the Mean As! library, for example, is a story told through the traditional narrative form of p rākau or the anthology of Māori myth and legend passed down to us through generations of Māori storytellers. It begins with the traditional waka (canoe) chant “Toi ate waka, he hoi,” and is used by its narrator to hide a number of messages he had for whaikaha (disabled) Māori who might be adrift, like him. There is a love story, told against the backdrop of two warring (community group) houses and narrated by a couple who do everything together

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“because that’s the way [they] are.” Another is a narrative poem, built and then deconstructed about the repeated phrases of an author intent on making clear that he is a good man. And a story that takes the form of a letter.

4.3

Analysis from the Inside Out

When we began, in our ableist way we imagined that we would create a written library. But as the researchers with intellectual disabilities quickly reminded us, being able to listen to the stories equalized power relationships by making them accessible to everyone. This led us to change our approach and to prioritize the development of audio-recordings of the stories as quickly as possible. We achieved this by engaging with community actors who gifted their voices to storytellers and to the library. The quote below highlights the importance of the spoken stories to the analysis undertaken by the researchers with intellectual disabilities. It was our job to find out what the story really said to us. We reacted to the stories tuned into them. We were hyper tuned! Our heads and our ears were listening. We had our thinking caps on. We were all trying to figure them out and most of the time we didn’t want to hear the last word. We wanted them to roll over and over. . .. Luskie et al. 2019, p. 6)

As explained above, the Mean As! Project intentionally extended on inclusive research approaches used in the Article 19 work, both by increasing the methodological control held by participants with intellectual disabilities and by giving primacy to analysis undertaken by researchers with intellectual disabilities. To achieve this, a second story reading strand to the project occurred whereby two experienced and two emerging researchers with intellectual disabilities worked together to co-develop their own form of iterative analysis. They did this by listening carefully to each story a number of times, before deciding on a set of key messages that they wanted to sit alongside each narrative in the Mean As! Library (https:// www.donaldbeasley.org.nz/projects/mean-as/). Through being able to listen more directly to the voices in each narrative (Milner et al. 2019), the co-researchers were able to forge different connections and brought fresh ideas to the task of analysis. The four researchers who listened to their peers’ stories so intently generated observations and insights about sexual citizenship of people with an intellectual disability as rich and as contextual as any who claim knowledge generation as their vocation. Below, we hope to illustrate this by outlining their analytic process and findings relating to one particular story from the Mean As! Library.

4.4

Committing to Research “by” People with Intellectual Disabilities

The process of co-constructing the story, “Sometimes I write letters” began the way most did, with a preliminary, “getting-to-know” one another meeting between the

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storyteller and the story gatherer. Initially, the writing pair approached their task linearly, with the storyteller drawing a timeline bookended by “Bad crap” and “abuse” at one end and “Te Awanga o Aotearoa Home based” (education), optimistically inscribed at the other pole. As weeks passed, the storyteller added to the timeline, building a more detailed topography of events that mapped out her ongoing recovery from childhood abuse. Texts began to flow, heralding new narrative directions and deepening both story-line and emergent relationship. New passages written at home were ferried to meetings and eventually, the story began to take its final shape when the author trusted the story gatherer enough to bring a box of letters to the interview. These letters were written by her to her abuser but never sent. They were an attempt to make sense of the life she felt he had taken from her when she was just 7 years old. In her story, the author speaks directly to women with intellectual disabilities who may also have experienced abuse and, as is the custom of letter writing she begins; “Dear reader, First of all, I want you to let you know that my story talks about hard things, but they are things that are important to say.” Beyond her cautioning, the letter writer goes on to provide a brief, matter of fact version of what happened to her in a school playground not far from her home. But by the letter’s close, she leaves her reader(s) with a clear understanding of her care for them. This story teller concluded her letter with the following words: I want you to know that bad mental and physical health isn’t your doing, it’s just part of life sometimes. But there is a lot you can do to help yourself and get support. Mental and physical health is a part of you and helps to make you who you are. So just try your best to live a life that you are happy with. Being close to your family, pets, and God can help you overcome these things. When I feel sad, or get reminded about my abusers, I also try and write letters. It helps me to let everything out. It might help you too. (p. 4). (https://www. donaldbeasley.org.nz/assets/projects/Mean As/PDF Stories/DB_MeanAs_SometimesIwri teletters.pdf)

Seven out of the eight storytellers in the Mean As! library were unquestionably the victims of sexual abuse. But in the telling of their stories, they claimed their right to be survivors and through their stories raise awareness of the abuses they experienced and more broadly the issue of violence and abuse in the lives of people with intellectual disabilities. The library of stories evidences competent social actors who have navigated the most extraordinary, complex, and discriminatory of relational terrains and reveals the humanness of people with intellectual disability who are often denied the opportunity to express their stories their ways. Dan Goodley (2021) in his book Disability and other human questions, reminds us that until people with disabilities were writing their own stories their own way, they were framed as failed human beings. Goodley claims that through disabled people’s research and writing, “disabled people [have] reappeared as the arbiters of knowledge [about them]” (p. 13). As noted above, the stories that were co-created for the Mean As! Project were analyzed by researchers with intellectual disability as part of the story “reading” (listening) strand. The researchers were deeply attuned to all of the stories, and their

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identification and analysis of the key messages contained within the story “Some times I write letters” can be seen below. The italicized font denotes the researchers’ verbatim words as they listened, identified, and thought about (analyzed) the story, and then agreed on the important message (the unitalicized font). Through their analysis of “Sometimes I write letters” the researchers found that: • “It takes time and work” “It is ongoing It is always.” (She wants women with an intellectual disability to know that recovery will take time.) • “She has a plan. She knows what to do.” (She is in control of her own recovery.) • “Past experiences don’t determine who you are.” (Her aim is to move past the abuse.) • “She takes her own advice by being close to her family, loving her pets, talking to god . . .. Oh, and writing letters to help other people.” (The path to recovery she has identified involves loving herself and loving others.) • “She wanted to be a mum. She would have been a good mum but I don’t think it’s going to happen for her.” (She refused to give up on the possibility of being a parent.) • “Her message is to know you have the right people in your life to support you. The right people in your life are strong, trustworthy, intimate, patient loving, and caring.” (Her best advice is to gravitate towards the right kind of relationship.)

At first read, these messages might have been lifted from a best practice manual describing how to support recovery from sexual abuse. Or they might, on the other hand, be a list of first iteration themes inductively identified by skilled academic researchers. However, in knowing that they were co-developed through the research process described above, we can simply read and accept them as the knowledge “made” by researchers with an intellectual disability. In addition to that described here, we witnessed countless other moments of thinking and analysis that stepped well beyond the professionally repeated narratives of the academy throughout the project. The researchers with intellectual disabilities brought an empathetic lens to the process of reading and responding to the stories of those with whom they shared dis/similar life stories including a compassionate orientation to the processes of knowledge production. In sharp contrast to the clean relational delineations between researcher and researched, the researchers with lived experience of intellectual disabilities and the social inclusion and exclusion they shared with the storytellers, meant they talked about and responded to storytellers as if they were humanly present. In the case of the author of “Sometimes I write letters,” they wanted her to know how important her story was, including the messages they took from it that they felt needed to be shared. The researchers reflected on why they did this, and what it meant to the story teller in their final, full report on the research. One of the most positive things about the story was that writing it may have helped the letter writer. We asked the story gatherer to take our comments back to the writer. We wanted to let her know how important it was for us to hear her story and what we thought after reading it. We hoped this would make her happy. After taking our comments back to the letter writer, the story gatherer told us that the writer was proud of her story and that she had shared it with one other family member. After reading her letter, she said her family member revealed to her that they had had a similar experience. Neither knew the other was recovering from abuse. (Luskie et al. 2019, p. 32)

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Through the ideological and methodological framework of inclusive research used in the Mean As! Project, the storytellers and researchers with intellectual disabilities were socially included in the knowledge making community normally inhabited by academics. When the storytellers chose to share their personal, intimate, and in some cases distressing stories of relationship and sexuality, they were making a decisive and brave decision to announce their presence and rightful place in discussions about and related to sexual citizenship. And when the researchers with intellectual disabilities joined the Mean As! Project, they worked as researchers developing a collection of stories and the key messages that would become a community resource. As they found their voices and gained the confidence to express their own feelings and opinions, these same researchers came to see the project as a vehicle through which they could initiate and lead the conversations they thought needed to happen to ensure all disabled people access their right to sexual citizenship.

5

Conclusion and Future Directions

In this chapter, we have retold and reflected on two projects that methodologically and ontologically focus on social inclusion. The Article 19 project was framed by questions about understanding community inclusion from the perspective of those who cannot easily tell or who are not usually asked about what this means to them. The Mean As! Project was framed by a commitment by disabled and non-disabled researchers to address a gap in research and advocacy about the right for people with intellectual disabilities to be understood and included sexual citizens in Aotearoa New Zealand. Both projects found ways for the voices and experiences of people with intellectual disabilities to be the focus of what was found, told, written, and shared and the Mean As! Project found ways to ensure the knowledge developed from the research was the knowledge of people with intellectual disabilities. Through this work we have highlighted research that is done “with” and “by” people with intellectual disabilities, gives people with intellectual disabilities the power and space to engage in knowledge creation that can transform ideas about who they are, what their worlds are like, and what social inclusion means to them. Earlier, we claimed that doing research inclusively is inherently tethered to social inclusion. Through sharing the stories of two projects that set out to be inclusive and promote new ideas about inclusion as told and analyzed by people with intellectual disabilities, we hope to have highlighted the critical elements; acknowledgement of the place of people with intellectual disability in framing ideas that shape their lives, strong respectful and collegial relationships, and flexible ways of engaging together in the research journey. We also hope that we have alerted researchers to the possibilities that can follow reimagining the views and power relationships of the existing intellectual and material order (Meininger 2010, p. 192) that have historically prescribed who can and cannot be a researcher and what counts as important knowledge about a community.

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Decolonizing Research Collaborating with Indigenist, Posthuman, and New Materialist Perspectives

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Wendy Somerville, Bethaney Turner, and Kerrianne Markulin

Contents 1 2 3 4 5

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Why the Need to Decolonize? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . What Does It Mean to Decolonize Research? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Indigenist Research Protocols: No Research on Us Without Us . . . . . . . . . . . . . . . . . . . . . . . . . . . Indigenous Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Yarning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 On Country Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Storying . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Posthuman and New Materialist Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Decolonizing research practices question Western cultural normativity and work to expand the perspectives of academic research through inclusion of First Nations ontological, epistemological, axiological, and methodological perspectives in research design, enactment, and outputs. Indigenist Research frameworks necessitate that research is carried out with, not on, First Nations Australians. The use of methodological tools, such as yarning and storying, that aim to disrupt the researcher/research power dynamic and emphasize relationality are critical to decolonizing research efforts. These Indigenist Research approaches can also be brought into conversation with new materialist and posthuman theoretical approaches to develop decolonizing research practices that are attentive to multispecies and multisensorial entangled encounters. W. Somerville · B. Turner (*) · K. Markulin Centre for Creative and Cultural Research, Faculty of Arts and Design, University of Canberra, Canberra, ACT, Australia e mail: [email protected]; [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_24

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Keywords

Decolonize · First Nations Australians · Indigenist Research · Country · Posthumanism · New materialism

1

Introduction

The drive to decolonize research, research practices, and academia has gained momentum in recent years. This has been accompanied by growing awareness of the need to recognize and support engagement with principles of Indigenist Research. However, notions of what decolonization means are not straightforward. Key literature identifies the need to acknowledge that social and institutional structures were designed by and for colonizers, but then raises questions about whether efforts to remediate this should be exerted to: acknowledge the validity of Indigenous perspectives?; insert Indigenous voices into social institutions?; fundamentally change society and the colonial assumptions through which it has been shaped? (Nakata et al. 2012; Rigney 1997, 1999; Tuck and Yang 2012). This chapter demonstrates that Indigenous logics, worldviews, and practices should not be subsumed or flattened by mere inclusion within social institutions as a means of decolonizing research. Instead, it offers generative ways of engaging with the ongoing process and need to decolonize research and the academy by bringing Western theoretical frameworks into conversation with Indigenist Research approaches. In an Australian context, at the core of Indigenist Research principles is the need to elevate Indigenous world views, emphasize the social and historical issues shaping Indigenous lives, and privilege the voices and experiences of First Nations Australian peoples and their lands (Moreton-Robinson 2013; Smith 2008; Martin and Mirraboopa 2003; Rigney 1997, 1999). These efforts represent a direct challenge to dominant traditional Western academic frameworks at the epistemological, ontological, axiological, and methodological levels. These challenges disrupt the traditional positioning of Indigenous researchers as the objects of study, instead centering Indigenous ways of knowing, being, and doing to support research carried out with or by, rather than on, Indigenous people and communities. This focus on researching with highlights the need to also ensure a decolonizing approach to the notion of social inclusion. A decolonizing approach requires that the term, and associated practice, is not used simply to refer to equal access to mainstream or dominant institutions and forms of power. Instead, a decolonized conception of social inclusion reimagines it as a practice that supports and elevates Indigenous worldviews and congruent conceptions of relationality, place, and being. Please note that the terms Indigenous Australians and First Nations Australians are used interchangeably in this chapter. Fundamental to any research involving First Nations Australian peoples, and necessarily guided by a decolonizing approach, is acknowledgment that there are a multiplicity of ways of knowing, being, and doing due to the fact that there are over

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250 distinct language groups and Nations. It must also be acknowledged that these knowings, beings, and doings are not linked to a static past nor a conception of Indigeneity constructed through binary opposition to Western identities. There are, thus, a plethora of views that could be used to reconfigure social inclusion within a decolonizing context. However, while there is much diversity that must be acknowledged, notions of relationality and place are central to First Nations Australian peoples’ epistemological, ontological, and axiological considerations. Experiences of Country or Nation are crucial to Indigenist Research practices in all of their diverse forms. Recognition of, and respect for, the concept of Country is commonly identified as underpinning a decolonizing research agenda. Country can be understood as that which “encompasses th[e] vibrant and sentient understanding of space/place which becomes bounded through its interconnectivity. Country and everything it encompasses is an active participant in the world, shaping and creating” (Bawaka Country et al. 2015, p. 270). For First Nation Australians, Country is an experience of entanglement where the world is understood to be co-created by all of the entities, human and more-than-human, within it. Country is an active agent in and on the world. However, First Nations Australians relationships to Country, while foundational, are not universal or straightforward. Connections to Country have been fractured and, in many cases, severed by colonial practices. Still, stories of the relationality of people and places are part of the traditional knowledge passed through the generations of First Nations Australians. Country is palpably experienced through storying. Stories inform the history, present, and future of First Nations Australians providing a locus of meaning, connection, and acknowledgment of the agency of the land and recognition of the agency of stories themselves as they weave through the past, present, and the future shaping and guiding ways of being, doing, and knowing. The knowledge and relationality embodied in storying is not available to all who seek to know. There is no entitlement to all knowledge (Jones and Jenkins 2014) within First Nations Australian communities. Rather, knowledge is gained only when it is given. Consequently, a decolonizing approach to research with First Nations Australians requires a rethinking of dominant Western approaches that position a researcher, within particular ethical parameters and resourcing/access constraints determined by authorizing institutions (namely, the academy), as freely able to gather and represent data to contribute to the generation of new knowledge. Decolonizing research practices that aim to promote stretched forms of social inclusion that do not simply validate dominant Western frameworks require attunement to the temporalities and relationalities of Indigenous ways of knowing, being, and doing. This often necessitates the use of nontraditional research methods. The use of methods such as yarning, storying, and being on Country aim to disrupt the unequal power dynamics embedded within traditional Western research approaches that advocate for, or assume, a researcher/researched and subject/object divide. Instead, Indigenist Research emphasizes relationality and endeavors to elevate First Nations Australians perspectives and approaches to support the process of decolonizing research. Indigenist Research approaches empower First Nations

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Australians and demonstrate respect for their ways of being, doing, and knowing. These approaches can also be brought into conversation with posthuman and new materialist theoretical approaches to develop a suite of tools available to carry out research that elevates Indigenist Research approaches and is attentive to multispecies and multisensorial encounters (Turner and Somerville 2020; Rosiek and Snyder 2020; Ravenscroft 2018). Posthuman and new materialist approaches have been critiqued for being apolitical (Blaser 2014; Thomas 2015), and thus positioned as failing to adequately attend to the structural issues and impacts of colonialism. However, when combined with Indigenist Research, and through an ongoing process of reflexive decolonization, they could contribute to research practices that are attentive to the entanglements of human and more-than-humans that enliven places. More-than-humans can be understood to be all nonhuman entities, from soil to buildings, and, within posthuman and new materialist ontologies are understood to have agency. Within these frameworks, agency, or the capacity to induce impacts in and on the world, is sometimes identified as a feature of an individual entity. However, more commonly, it is seen as an assemblage process whereby the unique situational and relational interactions among entities induce a particular form of action (Barad 2007). To explore why and how these approaches could contribute to the decolonizing of research practices and how they can support a stretched notion of social inclusion that moves beyond a minimalist incorporation of difference within a validated mainstream approach, the next section explains the necessity of decolonizing research before the chapter provides an overview of strategies that can be put in place to enact this and, finally, discusses ways that decolonizing research drawing on Indigenist, posthuman, and new materialist theoretical approaches can be enacted.

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Why the Need to Decolonize?

There is a long history of First Nations Australians being excluded from representations of Australia’s history and, where they are represented, being treated as objects of research “viewed with indifference” and as “possessing barely human status” (Martin and Mirraboopa 2003; Leane 2010). Henry Reynolds (1989, p. xii) notes that from the time colonists started writing histories of Australia “Aborigines were gradually eased out of the story.” The representations that remained have informed an ongoing legacy of deficit framing largely focused on difference, fetish, and fascination (Phillips and Bunda 2018; Fforde et al. 2013). Deficit discourse continues to be used in contemporary Australia to represent Indigenous Australians as problems (Ryan 2018; Fforde et al. 2013; McCallum et al. 2012). This is evident in the negative framing of Indigenous affairs in government policy/publications and the media, with use of terms such as “Closing the Gap” and the “Intervention” (Fforde et al. 2013; McCallum et al. 2012). The negative representation and deficit positioning of First Nations Australian peoples by non-Indigenous Australians, from individual authors to governmental policy and representation within cultural institutions such as galleries, libraries, archives, and

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museum (the GLAM sector), has been identified as a continuation of the process of invasion and dispossession (Martin and Mirraboopa 2003). The method of collecting First Nations Australians materials for display in the GLAM sector, as well as the act of gathering data and conducting broader research authorized by Universities, and the concomitant transfer of knowledge, has been identified as contributing to “the erosion of cultural practices” (Cooper 2007, p. 61). Tertiary institutions, as collectors of knowledge, can also be seen as complicit in the erosion of knowledges through the legitimation and reiteration of research done on, rather than by or with, First Nations Australians and the way that research was/is translated. Universities are repositories of information relating to Australian cultures and it is imperative that accounts of the lived experiences of First Nations Australians be included in the array of information and education contained in universities. However, Indigenous researchers have found themselves forced to operate within the limited and limiting parameters of Western authorized forms of knowledge production. As Rigney (2001, p. 4) writes: It is the racialised research structures, philosophies and methods of investigation that we have inherited from colonialism, within which Indigenous peoples function, that have been fundamental in the Indigenous scholar’s own oppression. We Indigenous scholars function within these structures because we have no other choice.

The process of decolonizing research practices is, therefore, critical to the mandate of Universities and the researchers they authorize and is an ongoing process that aims to disrupt ongoing colonial legacies and processes of delegitimization and devaluing of First Nations peoples and their knowledges.

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What Does It Mean to Decolonize Research?

It is becoming increasingly common to encounter references to processes of “Indigenising” and/or “decolonizing” the curriculum in the academy, although there is no exact definition of what these processes entail nor exactly what the terms mean. Much of the work on decolonization in Australia draws heavily on the seminal works of Linda Tuhiwai Smith, Lester Irabinna Rigney, Martin Nakata, and Karen Martin. At its core, this body of work highlights the ongoing detrimental impacts of colonization on Indigenous peoples around the world by focusing attention on how these processes serve to validate particular ways of knowing – or epistemologies – that center, privilege, and universalize Western normative frameworks, thus, working to delegitimize other forms of knowledge creation generated through alternative ways of being and doing. In response, Tuhiwai-Smith (2008), Rigney (1997, 1999), and their contemporaries advocate rejection of the colonial frameworks and encourage practices of research that reflect the unique perspectives of the colonized. Nakata et al. (2012, p. 124) note that the body of work of South American Walter Mignolo and his calls for “epistemic disobedience” has had a significant impact on Australian Indigenous scholars “whose critical analysis is constructed in strident opposition to positivist

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traditions embedded in colonialisms.” As such, decolonizing involves not simply exposing the limits and damage inflicted by normative colonial frameworks, but also “decolonial knowledge-making” that reasserts and draws in concepts and meanings from Indigenous knowledge and systems of thought and experience of the colonial (Nakata et al. 2012 p. 124). For some, decolonization goes much further than this. North Americans Eve Tuck and Wayne Yang assert that true decolonization takes place when land is given back or when colonizers go home noting that “decolonization is not a metonym for social justice” (Tuck and Yang 2012, p. 21). Indeed, there is a danger, expressed across the literature, that processes of decolonization predicated on minimal forms of social inclusion can perpetuate a new colonialism, whereby the normative basis of inclusion is viewed as being fabricated within dominant Western precepts reducing the potential for First Nations peoples’ “decolonial knowledge making” to challenge and disrupt ingrained Western ways of thinking. Nakata et al. (2012, p. 120) argue that, in the academy, “Indigenous studies has become fixated on a simplistic decolonization of Western knowledge and practices.” This occurs when recognition of the marginalization or invisibility of First Nations Australians’ ways of beings, doing, and knowing prompts hurried measures to redress these issues in forms that fail to acknowledge and respect the complexities of Indigeneity. As such, these approaches tend to reproduce problematic conceptions of the “Indigenous-Western” contest that can perpetuate limited, binary thinking relegating First Nations Australians to a reified past that derives authenticity from a notion of static tradition. First Nations Australian cultures must be viewed as dynamic and adaptable. Too often, representations of Indigenous culture are couched in terms such as traditional or traditionally, as if practices of culture and production of knowledge has not changed over time. This focus on a reified traditional past can constrain the capacity for future-focused building of critical conceptions of Indigenous Research and recognition of the legitimacy, strength, complexity, and capacity for change in Indigenous ways of being, doing, and knowing. Within the academy, a focus within Indigenous Studies on teaching practices designed to “decolonize” the minds of students has been identified as problematic and potentially not the most effective way of engaging participants in the complexities of the impacts of colonization and understanding, of, and capacities to support and enact, decolonial approaches in this “complex knowledge interface” (Nakata et al. 2012). These same concerns are also important to consider when one reflects on how to support decolonizing practices and processes being undertaken by researchers. This is a process which should not, and cannot, be rushed in an effort to meet requirements or desires of preformed notions of what constitutes social inclusion. Instead, decolonizing research practices requires effort to be invested in the epistemological, methodological, and axiological rethinking and reworking of how knowledge is shaped. The decolonization of research does not occur through a simple assertion of the need to adopt and adapt Indigenist Research approaches and rejection of Western ways of thinking. Decolonization of the academy, in the teaching of Indigenous Studies and conduct of research, is complex, and if the inputting of First Nations Australian peoples’ knowledges is accepted as one way

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that can aid decolonization in universities, then it must be considered to be a project that has no end. As such, the process of decolonization cannot be limited to one approach or a singular research project, but research projects and approaches can be designed to recognize the complexities of the cultural interfaces in order to support a decolonizing research agenda. Rigney (1999, p. 114) contends that Indigenous peoples should be “involved in defining, controlling and owning epistemologies and ontologies that value and legitimate the Indigenous experience.” Moreton-Robinson (2013, p.144) invests in the development of an Australian Indigenous women’s standpoint theory, an approach that provides “one way of exercising our sovereignty as an integral part of our research methodologies” while railing against the restricted forms of engagement available to validate and authorize research and the methodologies driving them within the academy. The enactment of research completely through an Indigenous framework has been identified as difficult to achieve, and not necessarily always desirable (Martin and Mirraboopa 2003). Instead, Martin and Mirraboopa (2003, p. 211) propose an approach that centers Aboriginal ontology, epistemology, and axiology, and aligns these things with characteristics of Western qualitative research to enable a “harmonisation” in research structures and procedures. Overarchingly, while there are multiple approaches, Indigenist Research that contributes to the ongoing process of decolonizing the academy (Martin and Mirraboopa 2003; Rigney 1997, 1999) involves adoption of a philosophical position that privileges Indigenous voices and life experiences, Indigenous knowledges, and empowers Indigenous peoples in the research process. In so doing, these approaches emphasize the historical, social, and political contexts that have shaped, and are currently shaping, the lives and experiences of First Nations Australian peoples and privilege connections to place and people through notions of relationality and Country.

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Indigenist Research Protocols: No Research on Us Without Us

Research that empowers Indigenous knowledge and places Indigenous values at the center of research frameworks, uses methods that centers First Nations Australian peoples, and are concordant with Indigenist methodologies (Rigney 1999; Martin and Mirraboopa 2003). Some key examples of these will be discussed in detail in the following section. However, first it is important to acknowledge that, while there is no one blueprint for empowering Indigenous knowledge holders in research, there are some key protocols that can guide these processes and works towards ensuring that any references to social inclusion support a decolonizing agenda in research practices. Following of appropriate protocols both on Country and when researching with Indigenous peoples is both a sign of respect and the correct way of “doing business.” Observance of cultural protocols and lore from the Country one is on, or people one is with, demonstrates an understanding of concepts of Country, custodians,

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traditional owners, and Elders (Steffensen in Archibald et al. 2019). Fundamental protocols are common among First Nations Australian peoples and “should not, as is currently the case, be characterised as non-legal, ‘voluntary’ codes of ethical practice” (Bowrey 2006, p. 68). Rather, they should be understood as laws to be observed that are based on trust, respect, equity, and empowerment (Graham 2009; Bowrey 2006). Vital to research with First Nations Australians is the understanding that much knowledge gained through past research presented skewed views that were representations of stereotyping. In that thinking, the people and the cultures holding different worldviews were regarded as problematic. In recent years, focus on the “deficit discourse” has called attention to those representations. Ethical research, in which First Nations Australian people are consulted throughout, is normalized in the frameworks available for researchers working in diverse fields. As an example, the Australian National Health and Medical Research Council is used in research in medical and allied area projects, whereas in the humanities, researchers use the frameworks developed by the Australian Institute of Aboriginal and Torres Strait Islander Studies, referred to as the AIATSIS Code. The AIATSIS Code outlines fundamental protocols, through a set of principles. Professor Michael McDaniel considers that “engaging ethically means many things but ultimately it is about respect and honour” (AIATSIS Website https://aiatsis.gov. au/sites/default/files/2020-10/aiatsis-code-ethics.pdf). The AIATSIS Code outlines four principles for research with First Nations Australians: Indigenous selfdetermination; Indigenous leadership; Impact and value; and Sustainability and accountability. It is the set of responsibilities within the principles that offer practical guidance to conducting research. As an example, principle 1, Indigenous selfdetermination, Sect. 1.3 states that “Knowledge, practices, science, innovations and cultural expressions of Indigenous peoples must be respected, protected and maintained,” and sets out the responsibility of researchers to have an understanding and appreciation of Indigenous knowledge systems to safeguard that the interests of “knowledge holders and custodians are protected throughout the project” (p. 13). The protection of the interests of First Nations Australian people is a key point in these frameworks. Researchers are accountable to individuals and communities for the way they develop and deliver their research and findings. This is the case whether the project involves discourse analysis, engages with issues such as youth suicide, or to answer a plethora of other questions that seek to understand First Nations Australian peoples’ ways of knowing, being, and doing. Ethical frameworks now demand closer scrutiny of the researcher’s position. Thus, reflexivity and subjectivity, rather than objectivity informs research outcomes. Evidence of these principles being observed in existing research is found in several places in the literature with researchers paying particular attention to protocol by stating who they are, their familial line and relationships, and reason for the research (Bainbridge et al. 2012; Phillips and Bunda 2018; Ryan 2018; Hughes and Barlo 2020; Turner and Somerville 2020). Ryan is a First Nations Australian author, while the other research teams consisted of both Indigenous and non-Indigenous researchers who enacted protocols to situate themselves as relative to other First

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Nations Australian peoples and their knowledges by providing details about their backgrounds and how they came to be involved in the research. In research by and with First Nations Australian peoples, there are also complex and varied protocols that determine what a researcher is told, and by whom. These areas include issues of “kinship rights and obligations, care for country, mourning protocols, restricted knowledge, and reciprocity in the form of a return of benefits to indigenous communities” (Jacklin, cited in Read et al. 2008, p. 135; Bowrey 2006). These areas are difficult to navigate and the advice and decisions of Elders of the particular community conducting the research, or with whom the research is being carried out, should be followed on a case-by-case basis. A key principle in the AIATSIS code is that First Nations Australians should be the leaders in research projects. This is directly aligned with the efforts to decolonize research and the academy. The process of decolonizing the academy and research must be ongoing and occur at the ontological, epistemological, axiological, and methodological levels. Adherence to the principles of the AIATSIS Code and the willingness, capacity, and investment of time needed to engage in respectful relations with First Nations Australian communities is foundational to these processes. This is challenging terrain for non-Indigenous academics who must remain alert to potential appropriation and avoid the enactment of approaches that perpetuate colonization. Writing on geography, non-Indigenous researchers Barker and Pickerill (2020, p. 643) note that while “it is not possible to decolonize geography per se because we exist in a colonizing context . . . we can become decolonizing and focus on how we nourish, create, and mobilise decolonizing processes.” Along with adherence to the principles referred to in this section, the research methods used in research by and with First Nations Australians are key sites that can support decolonizing processes. This chapter now turns to a discussion of key methods that can be used to support the conduct of research attuned to, and enacted within, a decolonizing agenda.

5

Indigenous Research Methods

Research must be conducted by or with, not on, First Nations Australian peoples. This can foster a co-constructed understanding of social inclusion that attempts to redress a history of privileging of dominant Western perspectives, and thus, is part of the ongoing process of decolonization. Foundational to this is the involvement of First Nations Australian communities and peoples in both identifying what their research needs and desires are and then, involvement in development of the research design to ensure the research is done in a culturally appropriate way. The methods selected can contribute to the empowerment of First Nations Australian knowledge holders and provides a culturally secure place for Indigenous peoples to tell their stories and have their voices heard (Geia et al. 2013). Yarning, storying, and conducting research on country are principal methods shown to be capable of supporting a decolonizing research agenda.

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Yarning

Yarning is an informal way of gathering data relevant to the research that requires the researcher to “develop and build a relationship that is accountable” to participants or co-researchers (Bessarab and Ng’andu 2010, p. 38). It is recognized as being culturally appropriate and an important way First Nations Australians’ connect with each other. Cheree Dean (2010, p. 6) argues that yarning “reflects a formal process of sharing knowledges that is reliant upon relationships, expected outcomes, responsibility and accountability between the participants, country and culture”. This positions yarning as important in the transference of knowledge for First Nations Australian peoples (Dean 2010; Geia et al. 2013). Yarning, then, is a method that adheres to the AIATSIS Code outlined above and pays particular attention to issues of relationality and Country (Hughes and Barlo 2020) and how these manifest in, and are shaped by, the voices and words of First Nations Australians. Employing yarning as a method privileges Indigenous voices and knowledge. As Bainbridge et al. (2012, p. 277) note, the use of yarning can “legitimize the experience of Aboriginal people as a source of knowledge and facilitate the development of theory directly interpreted from Aboriginal people’s own words.” It is practice which has been identified as consisting of four key strands: social yarning, cross-cultural yarning, collaborative yarning, and research yarning (Bessarab and Ng’andu 2010; Geia et al. 2013). Social yarning adopts a casual approach with conversations having no particular focus, but the interactions are a means of developing, strengthening, and maintaining relationships through learning about and being accountable to each other. Cross-cultural yarning occurs between Indigenous and non-Indigenous people and provides a space within which non-Indigenous participants can show cultural respect as well as learn about, and how to adhere to, appropriate cultural protocols. It is a form of yarning which acknowledges difference and provides opportunities for sharing and learning to reduce sociocultural barriers (Bessarab and Ng’andu 2010). Collaborative yarning is centered around one topic but involves sharing of ideas and knowledge “that can lead to new discoveries and understandings” (Bessarab and Ng’andu 2010). It is important to point out here that the notion of collaboration needs to be used with caution as it has been deployed in many projects to describe research involving First Nations Australians regardless of the level of agency First Nations Australians have had in the research process. Difficulties with funding bodies determining the nature of research, noninvolvement of First Nations Australian communities until after research proposals have been determined, and imposition of Western time parameters that are not aligned with community priorities (Minniecon et al. 2007) are all examples of difficulties frequently encountered that can limit collaboration among government and universities and First Nations communities and peoples (Minniecon et al. 2007; Bainbridge et al. 2012). Other criticisms that First Nations Australian peoples and communities have reported are that researchers and or the institution they represent are “culturally inappropriate, culturally unaware, intimidating and intrusive” (Minniecon et al. 2007, p. 27). The focus then should be on finding connections and new ways of moving forward together.

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Non-Indigenous people working in the Indigenous research space must avoid repeating errors of deficit positioning that have led to tensions in the field and which fail to work towards enactment of a decolonizing research agenda. Careful, ongoing reflective practices informed by the guidance of First Nations Australian cultural advisors is critical to ensuring respectful, equal, and reciprocal research practices. This is critical to the final form of yarning identified in the literature, research yarning, which involves conversation that centers around the research topic with the agreed purpose being to contribute to research (Bessarab and Ng’andu 2010). However, all forms of yarning are critical to the design and conduct of research projects with First Nations Australians. Adoption of this method is not a means of simple data extraction. It requires an investment in time and relationship building and the development of non-Indigenous participants/researchers understanding of the First Nations Australians and respect for their knowledges. Critically, this includes developing connections to place and often needs to be conducted on Country.

5.2

On Country Research

Conducting research on Country, where First Nations people speak with authority and the relationality inherent to First Nations Australians ontologies, epistemologies, and axiologies can empower Indigenous knowledge holders. The multidimensional aspects of Country are directly linked to the well-being and interconnected sense of self of First Nations Australians (Kingsley et al. 2013). Indeed, senior Aboriginal elders have been found to express thoughts and knowledge on Country that has not been able to be articulated off Country (Kingsley et al. 2013). As Bird Rose (2016, p. 40) notes, for First Nations Australians: One’s authority to speak is authorised by the Dreamings and the ancestors who are in Country, and by Country itself. When one speaks, ancestors and country are listening. Other living beings may well be listening too. Most assuredly Dreamings are paying attention.

Researching on Country with First Nations Australians respects the relational entanglements within which their conceptions of self and cultural knowledge are directly linked to place and its multiple more-than-human inhabitants. These are relationships of kin and care for people and country (Rose 2016; Bawaka Country et al. 2020). However, connections to Country are not always straightforward. Colonial practices of dispossession, removal, and marginalization mean that many First Nations Australians have had their connections to Country disrupted. Research with First Nations Australians must acknowledge these practices, their ongoing impact and recognize ways in which research practices can respond to and respectfully engage with these to promote decolonizing efforts. Practices of storytelling, and engagement with methods of storying, are possible approaches that can be used to acknowledge and strengthen connections to, and understanding of, Country.

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Storying

The key scholarship used to justify the telling of stories as research argues that First Nations peoples’ stories are land based (French et al. 2020) or, in Australia, occur through relationship with family and Country (Steffensen in Archibald et al. 2019). Storytelling reflects oral cultural practices and written storying is viewed as both continuing those traditions and expanding emergent contemporary practices. As Phillips and Bunda (2018, p. 18) argue, storying is an important method for First Nations researchers because it “gives voice to the marginalised in the academy.” Research employing Indigenous research methods such as storytelling is referred to in a number of different ways including: Indigenous storywork (Archibald 2008; Archibald et al. 2019); Indigenous family storying (French et al. 2020); and storying-with (Phillips and Bunda 2018). Indigenous storywork was developed by Jo-ann Archibald (Q’um Q’um Xiiem), a First Nations Canadian educator, as an approach for making meaning through the experiences of Indigenous peoples as research participant, researcher, storyteller, and teacher. She asserts that the meaning making process includes “when the researcher searches for ideas, seeking an interrelated understanding of historical, political, cultural, social, or other contextual impacts upon Indigenous Peoples, their stories and their communities” (Archibald et al. 2019, p. 4). Storywork has been taken up and applied by Australian First Nations researchers including Larissa Behrendt, Jason De Santolo, and Evelyn Araluen Corr. In the Australian context, storywork can be used to draw on partial or fragmented knowledge to contribute to the development of new knowledges that attend to breaks in First Nations Australians knowledge and experiences that occurred due to their displacement from Country. Storying centers Indigenous experiences and empowers First Nations Australians to author representations that were previously silenced, invisible, or put under erasure due to colonial practices. As such, storying by First Nations Australians has been described as a “profound form of resistance for the heart, mind body and spirit” (De Santolo 2019, p. 171) that forms a key strategy for decolonizing research practices. Yarning, on country research and storywork are methods that can be used to further a decolonizing agenda. They are methods that not only enable inclusion of First Nations Australian peoples in research, but approaches that intentionally privilege Indigenous ways of knowing, being, and doing in a direct attempt to redress the normativity of dominant Western epistemology and ontology and to elevate Indigenist approaches. In the next section, the Western research paradigms of posthumanism and new materialism are drawn to explore ways in which Indigenist Research can be productively brought into conversation with these Western theories to broaden the tactics and strategies available to researchers to strengthen efforts to decolonize the academy (Rosiek and Snyder 2020; Ravenscroft 2018).

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Posthuman and New Materialist Research

Posthumanism and new materialism have been described as apolitical theoretical frameworks (Blaser 2014; Thomas 2015) that inadequately attend to the colonial legacy and, thus, are in danger of perpetuating colonialist thinking. Both terms have been applied to a broad array of approaches and theorists and have, at times, been used interchangeably. Posthumanism can be understood to be an approach that challenges the dominant Western theoretical positioning of the human as the locus of all meaning. Work in this area is concerned with exposing the falsehoods of a nature/culture binary and challenges the myth of human exceptionalism or supremacy over the natural world. New materialism shares many of these concerns but is often distinguished by its particular focus on matter, or the material world, and its agential capacities. That is, rather than identifying humans as being the main actors in and on the world, new materialism aims to demonstrate the ways in which nonhumans or more-than-humans (from soil microbes to the built environment) act on, and shape, humans and the diverse array of elements that make up the world. Understanding of the relational assemblages among humans and morethan-humans, where both have capacity to exert agency, is common to both approaches and has been fueled by growing recognition of the destruction and devastation wrought by Anthropocentric narratives and actions. As outlined previously in this chapter, Indigenist Research is underpinned by recognition of the agency of Country and privileges relationality and connection, even if fractured, to place. However, it is vital that one should recognize the fractured and severed experiences of place that are common to many Indigenous people. While for some First Nations Australians, an enduring unbroken connection to place exists, for many others, this connection is fractured. Yet, through storying an understanding of the agency of Country and connectedness has, for many, been maintained or has provided a means of reconnecting. This agency and sense of relationality – where humans and nonhumans are inextricably entangled – long predates the “ontological turn” in the Western academy that has given rise to posthuman and new materialist approaches that aim to decenter humans and reimagine relations with the material world. While posthuman and new materialist approaches share Indigenous studies’ concern with the more-than-human inhabitants of the world and their capacity to act on and shape the lives of all, the language and frameworks used to explore this are quite distinct. Recognition of the agency of more-than-humans in posthumanism and new materialism has been expressed in a myriad of ways, notably as “agential realism” (Barad 2007), “thing power” (Bennett 2010), and through the concept of assemblages developed and enacted by thinkers such as Gilles Deleuze and Bruno Latour. The constituent parts of these assemblages may not all have equal capacity to act, but nor are the individual entities stable or static. Instead, the notion of assemblage points to the ways in which relations among the different components induce particular forms of reactions, or impacts that cannot be easily predetermined.

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Assemblages have been identified as creating something new through intra-actions (Barad 2007) that exceed the sum of their parts. Research informed by these approaches often invoke and contribute to the development of multispecies and multisensorial methodological approaches work towards decentering humans and human experiences by being attentive and responsive to more-than-humans. Multispecies and multisensorial methodological approaches commonly include the use of methods that gather data through audio-visual recordings with humans present and without paying particular attention to the affective dimensions of multisensorial experiences (Pink 2009; Krause 1987). These approaches also encompass mobile, emplaced methodologies, such as walking that focus on how bodies move over and in response to the features of particular places (Ingold 2004). These methods have been shown to be able to contribute to the decolonizing of research. Juanita Sundberg (2014, p. 39), a non-Indigenous American citizen and Canadian resident, contends that walking “is key to decolonizing in order to highlight the importance of taking steps—moving, engaging, reflecting,” going on to note that that “attention to walking—the embodied and emplaced movements involved in producing worlds—may help to foster recognition of the multiplicity of knowledge systems.” Wright (2018, p. 42), a non-Indigenous Australian academic, notes that “humility is at the heart of decolonising work” and “part of that humility in a multispecies project is to accept, embrace and revel in the fact that humans are not the only researchers, and that Country and its inhabitants have their own research agendas and desires.” However, despite this recognition by some key non-Indigenous academics, posthuman and new materialist work has, thus far, had limited interaction with Indigenous research. Decolonizing research requires not only acknowledgment of and respect for First Nations Australians’ knowledge systems, philosophies, and laws, but recognition of the capacity for Indigenist Research to attend to gaps and shortcomings in the dominant Western approaches. Importantly, it is vital to highlight that the concepts of reciprocity and accountability that are so critical to Indigenist Research can provide core learnings for those working with Western theoretical frameworks, including posthumanism and new materiality. These concepts demand that research is responsive to people, communities, and Country from the initial shaping of the idea through to the research outputs. Research informed by Indigenist studies scholarship is not driven solely by the researcher or research team, but is developed via ongoing consultation and through open communication with the human and more-than-humans that necessitate and enable the conduct of the research. Indigenist Research does not focus solely on speaking back to the dominant Western ontologies, epistemologies, axiologies, and methodologies that shape the academy, but on the conduct of research that demonstrates alternatives and is responsive to people, culture, and Country. However, marginalization of Indigenous scholars and privileging of Western frameworks persists. In the face of these dangers and ongoing limitations, a decolonizing agenda in many disciplines, notably geography and social sciences more broadly, could be furthered by exploring how Indigenist, posthuman, and new materialist approaches can be brought together in productive ways that work to increase the visibility and

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viability of research developed in response to, and with, First Nations Australian peoples’ ways of knowing being and doing. This could include better support for the conduct of ethical and culturally appropriate research, particularly that which involves more-than-humans considered to lack sentience (such as plants, earth, weather). Indigenist frameworks emphasize the foundational relationships between humans and more-than-humans, people and Country, highlighting the co-creation or “co-becoming” of these entities. For example, in the work of Bawaka et al. (2015, 2020), Bawaka Country is given primary authorship within the academic papers that constitute research outputs but Country, and the relationships with the people and communities involved in the research, is also recognized as having the agency to shape and make possible the research itself. Through these acts of recognition and collaboration, the research challenges entrenched Western notions of an object/ subject and researcher/researched binary opposition. Instead, research framed within these approaches ensures human/more-than-human relationships are experienced as processes of co-becoming that make possible what Rosiek and Snyder (2020, p. 342) refer to as “foundational transformation of the co-production of both inquiring subjects and objects in the onto-ethical entanglement of inquiry.” Indigenous studies scholarship has been shown to support these transformations and co-becomings through its focus on “particular practices of relational entanglement with non-human agents” and on forming relationships that are guided by an ethic of reciprocity (Rosiek and Snyder 2020, p. 339). These approaches have been identified as distinct from the efforts in posthumanism and new materialism that aim to elevate recognition of more-than-human agency in order to enable resistance to the human-centric dominance of much Western theorizing. The work then, for posthumanism and new materialism has been positioned as occurring largely at the semiotic level demanding recognition for nondominant modes of knowing within the academy, whereas Indigenous scholarship is positioned as focused on demonstrating how these worldviews do impact on and shape research and the identities and experiences of the humans and nonhumans involved (Rosiek and Snyder 2020). Relational entanglements, and the underpinning notion of reciprocity, is foundational to First Nations Australian peoples’ ontologies and epistemologies which were formed prior to Western academic narratives and traditions and which have been consistently revitalized in multiple and vital ways over many thousands of years. The need to resist dominant Western tropes is implicit in the work, but the focus remains on enlivening the particular foci of Indigenous research as its own distinct contribution that can enrich shared understanding of how to conduct research as well the knowledges and practices that are the outcomes of research. Doing so could strengthen ways of thinking about and conducting research that moves beyond limited Western notions of studying text and talk to more fulsomely engage with more-than-humans through multispecies and multisensorial methods. Importantly, this should include greater attention to the ways in which storying with or by humans, in yarning or storywork by and with First Nations peoples, is lively and imbued with agency. Such acknowledgment stretches the dominant Western academic conceptions of text and talk as means of mere data gathering and objects of analysis, to position storying as an agent of meaning-making and world creation.

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Conclusion and Future Directions

While posthumanism and new materialism represent efforts emanating from the Western academy to respond to the detrimental impacts of Anthropocentric practices by advocating for ways of approaching research that decenter humans and draw attention to the agency of matter, there is an ongoing colonial legacy informing these frameworks. Due to shared concerns with relationality and nonhuman agency, there is great potential for posthumanism and new materialism to be further decolonized through combining these frameworks with Indigenist Research approaches. In so doing, it is vital that the Anthropos (human) that posthumanism and new materialism resist is clearly marked as the dominant Western human and the associated ‘old humanist discourses’ that perpetuate notions of a nature/culture divide and the hyper-separation of humans from the environment (Plumwood n.d.). This mode of being human does not reflect the relational and reciprocal ways of knowing, being, and doing articulated and embodied by First Nations peoples, including First Nations Australians, that have been outlined in this chapter. While the multispecies and multisensorial methods discussed above are approaches that could be drawn on within Indigenist Research approaches and are important in efforts to decenter the Western human within research, recognition of the significant role of yarning and ongoing engagement with First Nations’ Australians when carrying out research on, and with, Country and community is critical. Storying is also central here. Storying and storywork with and by First Nations Australians does not represent a human-centric information source. Stories support understanding of the agency of Country, and stories themselves have agency, helping shape the listeners, tellers, and place in which this occurs. Decolonizing research involves much more than including First Nations Australians in existing institutions and associated discourses. It is not a simple matter of enacting policies of social inclusion. Instead, decolonizing research practices stretch notions of social inclusion beyond the existing normative frameworks and demand recognition of First Nations Australians’ ways of knowing, being, and doing. These provide important ontological, epistemological, axiological, and methodological approaches to research that deepen, enrich, and stretch shared understanding and can be productively brought into conversation with posthumanism and new materialism, to attend to the multifaceted relationalities that enliven particular places. Decolonizing of the academy and research is an urgent and broad scale task. All researchers should reflect on how their approaches and projects can respect Indigenist Research principles and further the decolonizing agenda.

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Participatory Research Coproduction of Knowledge Research as Inclusive Research

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Participatory Action Research (PAR) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Community Based Participatory Research (CBPR) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Photovoice Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

An increased use of the participatory research (PR) approach in health and social sciences has been witnessed in recent years. PR brings forth local knowledge and action that can uniquely help to address social and health issues of the community of interest. It, however, has raised many challenges to the practice of so-called scientific research. PR has asked crucial questions about the construction and use of knowledge and the importance of power relations which permeate the research process. PR challenges the role of the researchers in engaging with a community who is the focus of the research, and the capacity of the two partners to make society more just and equitable. PR is a distinctive form of social research that is linked with social transformation among socially excluded individuals and marginalized and oppressed societies. PR aims to scrutinize the political structures that disempower deprived, marginalized, and oppressed groups of people and to find ways in which these structures can be altered for the better. This chapter emphasizes what is referred to as “collective testimonies of people” within a collaborative effort. That is, through “collective testimonies,” people work P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] Z. S. Rice Camberwell, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_25

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together with others (the researchers), to resist oppression, colonization, and marginalization, and find ways to improve their lives and situations. In particular, the chapter will focus on the methodology of participatory action research (PAR), the community-based participatory research (CBPR), and the photovoice method. Keywords

Participatory research · Coproduction of knowledge · Participatory action research · Community-based participatory research · Photovoice · Marginalized people · Oppression

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Introduction

In the past few decades, an increased use of the participatory research (PR) approach in health and social sciences has been witnessed (Reason and Bradbury 2006a, b, 2008; Higginbottom and Liamputtong 2015; Rowell et al. 2017; Bradbury-Jones et al. 2018; Wright and Kongats 2018; Abma et al. 2019). PR has also been coined as “collaborative inquiry” (Trickett and Espino 2004). PR refers to “an approach” to research that perceives research as “a relational process through which new knowledge is produced collectively rather than by an individual on their own” (Abma et al. 2019, p. 7). Arguably, PR brings forth local knowledge and action that can uniquely help to address social and health issues of the community of interest. PR has raised many challenges to the practice of so-called scientific research (Santos 2014; Wallerstein and Duran 2017; Chevalier and Buckles 2019). PR practitioners question the use of positivism arguing that this scientific inquiry dismisses the “experiential knowledge” of individuals. It instead emphasizes the passivity of research participants and hence suppresses their voices (Wallerstein and Duran 2017). Although it is useful, positivism “thwarts the field’s interests in alleviating suffering and promoting social justice” (Buchanan 1998, p. 440). Additionally, PR has asked crucial questions about the construction and use of knowledge and the importance of power relations which permeate the research process. PR challenges the role of the researchers in engaging with a community or local people who are the focus of the research, and the capacity of the two partners to make society more just and equitable (Wallerstein et al. 2017; Abma et al. 2019). Researching within this framework necessitates the use of research methodologies which “go beyond the ‘mere involvement’ of those whose experiences are being researched to allow for their ‘responsible agency in the production of knowledge’” (Salmon 2007, p. 983). This will significantly decrease the “risk of co-option and exploitation of people in the realization of the plans of others” (McTaggart 1997, pp. 28–29). It is argued that through collaboration between researchers and research participants, social inclusion among people can be achieved, as they are able to meaningfully participate in the research. The approach encourages people to take action that can also lead to empowerment (Lawson 2015a, b). It has been suggested elsewhere that participatory research (PR) is a distinctive form of social research that is linked with social transformation among socially

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excluded individuals and marginalized and oppressed societies (▶ Chap. 17, “Qualitative Inquiry and Inclusive Research” see also Higginbottom and Liamputtong 2015; Burns 2018; Abma et al. 2019; Eckhoff 2019). PR aims to scrutinize the political structures that disempower deprived, marginalized, and oppressed groups of people and to find ways in which these structures can be altered for the better (Brydon-Miller et al. 2011; Lykes and Crosby 2014; Higginbottom and Liamputtong 2015; Lawson 2015a, b; Bradbury-Jones et al. 2018; Abma et al. 2019). As such, PR attempts to cultivate new forms of knowledge through a creative synthesis of the different understandings and experiences of people who take part in the research. Since this knowledge is created from the point of view of deprived, marginalized, and oppressed groups, it aims to transform the “social realities” of these people. PR legitimizes “the right to research” among socially excluded people (Burns 2018; Abma et al. 2019; Eckhoff 2019). These individuals have an opportunity to acquire new knowledge and skills through their participation in research; this helps to empower them and enable them to take control of their life. It prevents marginalized people from becoming passive objects who have research “done on them,” because they can have equal power in contributing in the research. Through this empowerment and emancipation, inequalities and injustices in health and social care can be reduced or eradicated. This chapter emphasizes what is referred to as “collective testimonies of people” within a collaborative effort (Liamputtong 2010). That is, through “collective testimonies,” people work together with others (the researchers), to resist oppression, colonization, and marginalization, and find ways to improve their lives and situations. In particular, the chapter will focus on the methodology of participatory action research (PAR), the community-based participatory research (CBPR), and the photovoice method.

2

Participatory Action Research (PAR) PAR embodies the principle of collaboration between researchers and participants as equal partners seeking the goal of creating positive change. PAR has been shown to be highly effective in engaging participants in the research process and in empowering them to influence the research process in a manner that allows them to have their voices heard, their needs addressed, and research outcomes used to their benefit. (Johnson et al. 2018, p. 45)

Following the theoretical framework established by Paulo Freire (2000 [1970]), the main goal of participatory action research (PAR) is to result in “a more just society through transformative social change” (Kwok and Ku 2008, p. 266). Within the PAR approach, research is not perceived to be only “a process of creating knowledge” but is also seen as “a process of education, development of consciousness, and mobilization for action” (Kwok and Ku 2008, p. 266). PAR, as Park (2006, p. 83) contends, is “action-oriented research activity” that allows ordinary people to address common concerns that occur in their daily lives, and in the process of this participation, they also generate knowledge.

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PAR is not a research method nor a theory. Rather, it is a research approach that Lawson (2015a, p. ix) refers to as “a special investigative methodology,” and what Rowell et al. (2017, p. 6) have coined as a “big tent.” According to Chevalier and Buckles (2019, p. 3), PAR “promotes pluralism and creativity in the art of discovering the world and making it better at the same time.” As a research methodology, PAR “accommodates a broad spectrum of theoretical orientations and methods.” The central frame of participatory action research is that the research begins with the problems that people face and then they participate in the research process as fully as possible (Park 2006; Reason and Bradbury 2006a, b, 2008; Burns 2018; Abma et al. 2019). The research participants are full partners in the research process and are treated as coresearchers. Together with the researchers, they became involved in the research cycle to find solutions for their problems. As Reason and Bradbury (2006b, p. 1) contend, PAR is an “inquiry and participation in search of a world worthy of human aspiration.” Participatory action research (PAR) pursues to reinforce empowerment and social justice as well as relocate power in the research process to research participants. It is a research approach that is “done with, rather than on,” research participants (Tanabe et al. 2018, p. 282). It blends action and reflection in a continual sequel. PAR is also a social practice which assists marginalized people to acquire “a degree of emancipation as autonomous and responsible members of society” (Park 2006, p. 83). To Park, PAR can be referred to as “research of the people, by the people, and for the people.” The ultimate goal of PAR is to “bring about changes by improving the material circumstances of affected people” (p. 84). Researchers adopting this methodological approach clearly aim to work collaboratively with people who have traditionally been oppressed and exploited. Collectively, fundamental social changes can be achieved through PAR (Brydon-Miller 2001; Burns 2018; Johnson et al. 2018; Abma et al. 2019). PAR arises from two research approaches namely action research (AR) and participatory research (PR) (Thiollent and Colette 2017). PR’s philosophy is grounded in the power of emancipation derived from the “Southern tradition” of research (Wallerstein and Duran 2017). The original work was associated with oppressed peoples in less developing societies (see Fals Borda 2006; Swantz et al. 2006; Thiollent and Colette 2017). The aim of PR is “structural transformation” (Khanlou and Peter 2005, p. 2334), and its target groups include “exploited or oppressed groups” such as marginalized, ethnic minority groups and Indigenous peoples. PAR commits to producing “the political nature of knowledge” and emphasizes “a premium on self-emancipation” (Esposito and Murphy 2000, p. 180). Therefore, PAR is ideally an approach used with and for marginalized people and those groups in cross-cultural settings. Johnson et al. (2018, p. 45) argue that PAR is particularly effective in empowering communities that are disempowered, suffer from health and healthcare disparities, are undereducated or underemployed, are closed, and have a history of having been abused in prior research efforts.

According to Park (1993, p. 15), PAR accommodates “space for the oppressed to use their intellectual power to be critical and innovative in order to fashion a world free of domination and exploitation.” Therefore, great care is needed to ensure that these

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marginalized participants will benefit from the research and not be further exploited or vulnerable. The ideals of PAR are that the participants who are directly involved in the research should be benefited (see Arcaya et al. 2018; Esienumoh et al. 2018; Graca et al. 2018; Johnson et al. 2018; Kiser and Hulton 2018; Kong 2018; Tanabe et al. 2018; Forbes-Genade and van Niekerk 2019; Karlsson et al. 2019). PAR emerges deliberately as a means for resisting traditional research practices which are seen by some cultural groups as “acts of colonization” when research aims and policy agendas are imposed on a community and far removed from their concerns or needs (Kemmis and McTaggart 2008, Kemmis et al. 2014; McTaggart et al. 2017). In PAR, community members are the experts in their own lives. They should be actively involved in making decisions, planning the research, and implementing and reviewing changes. As such, this research is not isolated from their everyday experiences, as is often the case with conventional research carried out solely by external researchers (McTaggart et al. 2017). Kemmis et al. (2014, p. 20) state the following: At its best then, critical participatory action research is a social process of collaborative learning for the sake of individual and collective self formation, realised by groups of people who join together in changing the practices through which they interact in a shared social world.

PAR allows community members and the researchers to have their “freedom to explore and to recreate” (Fals Borda 1991, p. 149). Through PAR, the participants and the researchers work collaboratively to find new knowledge and practical solutions to end their problems. It commits to “the principle of autonomy and ownership in collective research” (dé Ishtar 2005, p. 364). The Indigenous selfdetermination (PAR) carried out by Zohl dé Ishtar (2005), for example, has resulted in the establishment of the Kapululangu Women’s Law and Culture Centre in the Great Sandy Desert in Western Australia. PAR is thus an appropriate research approach for working with Indigenous people and in cross-cultural research where the researched participants are extremely oppressed by structural violence. Based on the same epistemological perspective of PAR, Kaupapa Mãori research methodology has emerged (Smith 2006, 2008, 2014). Linda Tuhiwai Smith (2014, p. 183) asserts that Kaupapa Mãori research allows the researched and the researchers to be able to work together in order to set strategies for “the priorities, policies, and practices of research for, by, and with Mãori.” Through emancipation, Kaupapa Mãori research permits oppressed, silenced, and marginalized groups such as the Mãori to have more control of their own lives and their community (Smith 2006, 2008, 2014; Liamputtong 2010; ▶ Chap. 17, “Qualitative Inquiry and Inclusive Research”).

3

Community-Based Participatory Research (CBPR) CBPR turns upside down the more traditional applied research paradigm, in which the outside researcher largely has determined the questions asked, the research tools employed, the interventions developed, and the kinds of outcomes documented and valued. (Wallerstein et al. 2017, p. 2)

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Community-based participatory research (CBPR) is an emerging research approach which equally involves the community such as community members, agency representatives and organization, and the researchers in all facets of the research process (Israel et al. 2005, 2013; Lawson 2015a, b; Coughlin et al. 2017; Wallerstein et al. 2017; Collins et al. 2018; Tremblay et al. 2018; Willson 2019). CBPR empowers community groups to collaborate in research to appreciate and address the complex social, cultural, political, and structural factors impacting the lives of individuals and their communities (Lawson 2015a, b; Tremblay et al. 2018; Willson 2019). CBPR aims to merge action and knowledge to “create positive and lasting social change” (Collins et al. 2018, p. 884). Increasingly, researchers are pulled to CBPR for research that appreciates community participation to rectify health inequality issues arising from social disadvantage (Willson 2019). At its essence, CBPR examines the “power relationships” that are intrinsically ingrained in the production of Western knowledge (Tremblay et al. 2018, p. 2). CBPR encourages a share of power between the researcher and the research participants. Importantly, it acknowledges the authority of experiential knowledge and encourages research that aims at bettering practices and situations of people. Essentially, the CBPR comprises salient characteristics as illustrated in Fig. 1. CBPR is particularly valuable when working with marginalized individuals as the approach promotes the sharing of control over the health and social conditions of these individuals as well as the installation of respectful relationships with them (Tremblay et al. 2018; see also Xia et al. 2016; Greenwood 2017; Vaughn and Jacquez 2017; Collins et al. 2018; Graca et al. 2018; Kiser and Hulton 2018; KatzWise et al. 2019). According to Katz-Wise et al. (2019), undertaking CBPR with

Fig. 1 Characteristics of CBPR. (Adopted from Israel et al. 2013)

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marginalized people can help empower them to share their voices, as well as inform more effective health and social care programs that best serve their needs. In the health sciences, CBPR has become essential in the fields of public health, nursing, and medicine (Collins et al. 2018). CBPR is well suited for addressing health disparities and inequities in socially disadvantaged, stigmatized, and marginalized people. Rather than focusing on the health problems of people, CBPR emphasizes their resources, opportunities, and resilience for positive advancement (Coughlin et al. 2017; Israel et al. 2017; Kiser and Hulton 2018; Willson 2019). Additionally, CBPR is a promising research approach that can help to implement socially just and culturally appropriate health and social care to marginalized people (Collins et al. 2018). In their CBPR research with Arab American’s perceptions of health and health care utilization, Leh and Saoud (2020, p. 449) suggest that a CBPR approach permitted “the inclusion of an active voice to this select Arab American community.” Their study provided extraordinary knowledge about the sociocultural factors that impact understandings of health, health care access, and health care utilization of Arab Americans. They suggest that their study findings yielded fruitful information that can inform health promotion strategies. In particular, the results can “guide the development of culturally congruent community-based interventions aimed at reducing disparities associated with accessing the health care system” (Leh and Saoud 2020, p. 449). CBPR has been used extensively in research involving Indigenous peoples (see Mohatt and Thomas 2006; Bell et al. 2016; de Leeuw 2017; Dunleavy et al. 2018; Kyoon-Achan et al. 2018). For example, the People Awakening project (PA) was constructed as collaborative research between Alaska Native community members and university researchers (Mohatt and Thomas 2006). Using an approach grounded within an Alaska Native cultural worldview and over 4 years, the project was developed to examine possible protective and resilient factors among Alaska Natives who have recovered from, or do not abuse, alcohol. The community-focused approach adopted in this study, as Mohatt and Thomas (2006, p. 97) point out, “moved away from interacting with participants as objects of representational knowledge to building equal community-investigator partnerships working together to shape and construct the research questions, methods, interpretations, and conclusions. This collaborative process imbues knowledge (or results) with the meanings ascribed to these results by the participants.” The project was built on the framework that Paulo Freire (2000 [1970]) refers to as “conscientization,” where knowledge is generated through “a process of empowering communities” and acts as an “emancipator” (Fals Borda 2001).

4

The Photovoice Method

In PR, often researchers make use of more inclusive means to engage with their participants. According to Park (2006, p. 84), the use of the inclusive research approach, such as art, photography, theatre, storytelling, music, dance, and other

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expressive media, is essential to “reveal the more submerged and difficult-to-articulate aspects of the issues involved.” Thus, PR researchers have used community meetings and different types of community events, such as theatre, storytelling, puppets, song, drawing, and painting, as well as educational camps, as means of gathering data among marginalized people (Brydon-Miller 2001; Wallerstein and Duran 2017). Many of these so-called “unconventional” (but more inclusive research) methods employed in PR are essential if researchers wish to offer people the chance to fully participate (see D’Amico et al. 2016; Wallerstein and Duran 2017; Jarldorn 2019; Lee et al. 2019; Oliveira 2019; Ramji et al. 2020; ▶ Chap. 17, “Qualitative Inquiry and Inclusive Research”). Salazar (1991) argues that it is crucial for “oppressed” people to be able to find a way to tell their stories, and this may help them to break “culture of silence” resulting from centuries of oppression. Particularly within the CBPR, the photovoice method has emerged as a creative and inclusive means of working with marginalized people. The photovoice method rejects traditional paradigms of power and the production of knowledge within the research relationship (Jarldorn 2019; Lee et al. 2019; Teti et al. 2019; Loignon et al. 2020; Teti and Wyk 2020). The researchers are more concerned about developing critical consciousness and empowerment among their research participants. The photovoice method, thus, tends to be used in participatory and collaborative research. The photovoice method allows research participants to record and reflect the concerns and needs of their community via taking photographs. It also promotes critical discussion about important issues through the dialogue about photographs they have taken. The concerns of research participants may reach policy-makers through public forums and the display of their photographs. By using a camera to record their concerns and needs, it permits individuals who rarely have contact with those who make decisions over their lives, to make their voices heard (Jarldorn 2019; Lee et al. 2019; Teti et al. 2019; Loignon et al. 2020; Teti and Wyk 2020). Photovoice is based on Paulo Freire’s (2000 [1970]) approach to critical education, and a participatory approach to documentary photography. The educational praxis that Freire advocates emphasizes that people speak from their own experience and share with others. It requires people to identify historical and social patterns that oppress their individual lives. This allows people to be able to critically examine the issues from their root causes and to find strategies to change their situations and lives. Freire stresses the power of visual images as a vehicle to assist individuals to think critically about the forces and factors which have a great impact on their lives. Photovoice emerges from this philosophy and “builds on a commitment to social and intellectual change through community members’ critical production and analysis of the visual image” (Wang and Pies 2008, pp. 184–185; see also Kingery et al. 2016; Ronzi et al. 2016; Mark and Boulton 2017; Bryanton et al. 2019; Jarldorn 2019; Lee et al. 2019; Teti et al. 2019; Loignon et al. 2020; Teti and Wyk 2020). The photovoice method is also based on feminist research (Wang 1999; Wang and Pies 2008; Jarldorn 2019; Lee et al. 2019). As Wang and Pies (2008, p. 185) write, “feminist theory suggests that power accrues to those who have a voice, set language, make history, and participate in decisions.” Based on the feminist framework, photovoice practice advocates that individuals can use this approach “to influence

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how their public presence is defined.” The photovoice methodology allows individuals to use “photography as a community voice to reach policymakers.” As such, the methodology moves “beyond the personal voice to the political.” Photovoice was originally developed by Wang (1999) to enable village women in China to photograph their health experiences and was able to transform their health outcomes. The method was used as an empowerment tool for the women who lived in a poor, mountainous, and remote area in southwestern China. Through the photos and group discussions, the women explored their daily interactions. The women identified reproductive health as their main concern, and this became the focus of their photovoice project (see Wang et al. 1996; Wang and Burris 1997). In other projects in China, Wang et al. (1996) also adopted photovoice as their methodology. Women were given cameras to take photographs of their lives; they became the “native photographers.” The photographs were then used by the women to articulate their needs from their own viewpoints. Through their participation in this photovoice project, they owned the photographs they had taken, and through dialogue, discussion, and storytelling, the women were able to engage with policymakers and planners, granting empowerment among Chinese women in the study. Methodologically, photovoice requires the participants to take photographs that represent their understanding and meanings of life. The photographs are then used as the basis for discussions in later interviews, which often occur in group settings. The discussion of the photographs permits the participants to articulate the understanding and interpretations of their images they have taken (Jarldorn 2019; Lee et al. 2019; Teti et al. 2019; Loignon et al. 2020; Teti and Wyk 2020). The aims of the photovoice method are presented in Fig. 2. In practice, the photovoice method requires research participants to perform a few tasks: • Taking part in an informational training session, to receive a camera and determine the topic for their first photo assignment. • Taking photographs to record the realities of their experiences for each photo assignment. • Participating in group discussion sessions to share their photographs from each photo assignment and to examine the issue and discuss potential strategies for change. According to Wang (1999), participants follow the SHOWED framework to guide the discussion of their photographs. This includes the following questions: What do you See in this photograph? What is Happening in the photograph? How does this relate to Our lives? Why do these issues exist? How can we become Empowered by our new social understanding? What can we Do to address these issues? (López et al. 2005; Liamputtong 2010; Jarldorn 2019). • Organizing a forum and exhibition to present their photographs and stories to local policymakers and service providers whom they have identified as potential collaborators who could influence positive changes (Streng et al. 2004, p. 405). Earlier photovoice projects have suggested that the participants benefit personally and collectively. For example, in the Language of Light photovoice project (Wang

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Fig. 2 Aims of the photovoice method (Source: Carlson et al. 2006)

2003), both women and men suggested that their participation in the project promoted self-esteem and enhanced their quality of life and status with their peers. Their participants said that they enjoyed the creative process of the method and the attention they received from the researchers, policymakers, and the media. One 60-year-old woman put up her camera and announced: “This is history!” (Wang 2003, p. 187). Recently, more adoption of the photovoice method in CBPR research as well as research involving with marginalized people have been witnessed (see Kingery et al. 2016; Ronzi et al. 2016; Mark and Boulton 2017; Bryanton et al. 2019; Jarldorn 2019; Lee et al. 2019; Loignon et al. 2020; Michalek et al. 2020; Ussher et al. 2020). In their research regarding sexual violence among transwomen of color in Australia, Ussher et al. (2020) used the photovoice method as a means for the women to share their everyday experiences of sexual violence. The women used their own smartphones to take photographs and submitted them to the research team

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electronically. The photographs were used as the basis for discussion in a follow-up interview conducted with the initial interviewer, which focused on the meaning of the images participants had provided. At the end of the photovoice project, the research team organized an exhibition to disseminate the photographs taken by the participants. Due to the coronavirus pandemic in Australia, the exhibition was changed to a virtual exhibition to reach wider audiences (see https://www. crossingtheline.online/crossing-the-line-report). This study reaffirms the strength of the photovoice method as inclusive research that gives voice to a group of socially excluded and vulnerable women as well as cultivates empowerment among the transwomen of color in the study. In Loignon et al.’s study (2020), The EQUIhealThY project (a PR project using the photovoice method) was established in partnership with an international community organization working to provide access to healthcare and overcome poverty. According to Loignon et al. (2020, p. 2), photovoice confirms that it is a “transformative method” that can benefit both academic and nonacademic researchers, and lead to changes in the local setting. Their research promoted practices for embracing the experiential knowledge of individuals living in poverty “when seeking solutions to provide more equity in the healthcare system.” This project emphasizes the relevance of the coproduction of healthcare. Loignon et al. (2020, p. 15) contend that this coproduction is essential when “healthcare services are becoming more and more expensive and where health inequalities and discrimination prevent people from taking full advantage of the health and social services system.” Their research shows the importance of collaboration between people who are living in poverty and those who provide healthcare to them, as well as “the production of knowledge attempting to destigmatize poverty and the people living in this condition” (p. 15).

5

Conclusion and Future Directions The next few years comprise a key moment in which social science must up its game to address and challenge inequality, in alliance with other actors who are already raising their voices. The time is now. (Wallerstein and Duran 2017, p. 1)

This chapter has discussed the collaborative methodology of participatory research (PR) including the participatory action research (PAR), community-based participatory research (CBPR), and the photovoice method. It is argued that participatory research provides opportunities for many marginalized individuals to be able to engage in research and find solutions that benefit not only themselves but also others in their own communities. The process of PR is empowering. It is a crucial methodology for researchers who attempt to bring social justice to the community involved in the research. An emerging approach within the PR methodology is the photovoice method. Through the use of cameras, the participants are able to capture visual images that represent their lived realities. The visual stories can convey more vivid and concrete evidence to policy-makers and those in authorities and influence changes in policy

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and practice. The process is also empowering for those who take part. A number of photovoice projects have brought about positive changes in the lives and living situations of many individuals in different parts of the world. The authors strongly advocate this method in social inclusion research, particularly when we work with marginalized and vulnerable people. It has been realized that, we are cognizant that many parts around the globe are currently caught in the struggles of what Rogers (2011, p. 3) depicts as “an age of fracture.” This age of fracture is also applicable to research. Lawson (2015b, p. 2) warns that: Research has the potential to marginalize and exclude vulnerable people, especially those who reside in challenging places. Moreover, research based knowledge has the potential to silence the voices and choices of vulnerable people. When this occurs, the result is a bitter irony. Research designed to advance the common good ends up being exclusionary, dis criminatory, and oppressive, perhaps becoming yet another form of domination.

A research approach that can help to avoid the form of domination that Lawson has cautioned is needed. As an inclusive research approach, PR can empower morally guided researchers to embrace their social responsibilities toward marginalized people in the world.

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Smith, L. T. (2008). On tricky ground: Researching the native in the age of uncertainty. In N. K. Denzin & Y. S. Lincoln (Eds.), The landscape of qualitative research (3rd ed., pp. 113 143). Thousand Oaks: SAGE. Smith, L. T. (2014). Decolonising methodologies: Research and indigenous peoples (2nd ed.). London: Zed Books. Streng, J. M., Rhodes, S. D., Ayala, G. X., Eng, E., Arceo, R., & Phipps, S. (2004). Realidad Latina: Latino adolescents, their school, and a university use photovoice to examine and address the influence of immigration. Journal of Interprofessional Care, 18(4), 403 415. Swantz, M. L., Ndedya, E., & Masaiganah, M. S. (2006). Participatory action research in southern Tanzania, with special reference to women. In P. Reason & H. Bradbury (Eds.), Handbook of action research: Concise paperback edition (pp. 286 296). London: SAGE. Tanabe, M., Pearce, E., & Krause, S. A. (2018). “Nothing about us, without us”: Conducting participatory action research among and with persons with disabilities in humanitarian settings. Action Research, 16(3), 280 298. Teti, M., Majee, W., Cheak Zamora, N., & Maurer Batjer, A. (2019). Understanding health through a different lens: Photovoice method. In P. Liamputtong (ed.), Handbook of research methods in health social science (1147 1166). Springer: Singapore. Teti, M., & van Wyk, B. (2020). Qualitative methods without borders: Adapting photovoice from a U.S. to South African setting. International Journal of Qualitative Methods, 19, 1 3. https://doi. org/10.1177/1609406920927253. Thiollent, M., & Colette, M. M. (2017). Action research and participatory research in Brazil. In L. L. Rowell, C. D. Bruce, J. M. Shosh, & M. M. Reil (Eds.), The Palgrave international handbook of action research (pp. 161 176). New York: Palgrave. Tremblay, M. C., Martin, D. H., McComber, A. M., McGregor, A., & Macaulay, A. C. (2018). Understanding community based participatory research through a social movement framework: A case study of the Kahnawake schools diabetes prevention project. BMC Public Health, 18, 487. https://doi.org/10.1186/s12889 018 5412 y. Trickett, E., & Espino, S. (2004). Collaboration and social inquiry: Multiple meanings of a construct and its role in creating useful and valid knowledge. American Journal of Community Psychol ogy, 34(1/2), 1 69. Ussher, J., Hawkey, A. J., Perz, J., Liamputtong, P., Sekar, J., Marjadi, B., Sekar, J., Schmied, V., Dune, T., & Brook, E. (2020). Crossing boundaries and fetishization: Experiences of sexual violence for trans women of color. Journal of Interpersonal Violence. https://doi.org/10.1177/ 088620520949149. Vaughn, L. M., & Jacquez, F. (2017). Community based participatory research studies involving immigrants. In S. S. Coughlin, S. A. Smith, & M. E. Fernandez (Eds.), Handbook of community based participatory research. New York: Oxford University Press. Wallerstein, N., & Duran, B. (2017). Theoretical, historical, and practice roots of CBPR. In N. Wallerstein, B. Duran, J. Oetzel, & M. Minkler (Eds.), Community based participatory research for health: Advancing social and health equity (3rd ed.). San Francisco: Jossey Bass. Wallerstein, N., Duran, B., Oetzel, J., & Minkler, M. (2017). Community based participatory research for health: Advancing social and health equity (3rd ed.). San Francisco: Jossey Bass. Wang, C. (1999). Photovoice: A participatory action research strategy applied to women’s health. Journal of Women’s Health, 8, 185 192. Wang, C. (2003). Using photovoice as a participatory assessment and issue selection tool: A case study with the homeless in Ann Arbor. In M. Minkler & N. Wallerstein (Eds.), Community based participatory research for health (pp. 179 196). Francisco: Jossey Bass. Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology and use for participatory needs assessment. Health and Behaviour, 24, 369 387. Wang, C., & Pies, C. A. (2008). Using photovoice as a participatory assessment and issue selection: Lessons from a family, maternal, and child health department. In M. Minkler & N. Wallerstein (Eds.), Community based participatory research for health: From process to outcomes (2nd ed., pp. 183 197). San Francisco: Jossey Bass.

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Using Participatory Arts-Based Approaches to Promote Inclusive Research

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Arts Based Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Poetic Inquiry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Performance Poetry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The Seen but Seldom Heard Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 The Seldom Heard Voices Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter explores the value of participatory arts-based approaches to research with individuals and groups that experience social exclusion and marginalization. Such approaches aim to “make a difference” to real world challenges and are grounded in social justice, using multiple creative ways drawn from the arts to represent experiences, including written word and performance, music and visual art forms including film and photography. Arts-based approaches provide a range of tools to enable participants to express themselves in creative ways using the narrative, words, or visual imagery that they choose. This may help to challenge mainstream categories, assumptions, and taken for granted understanding to provide new ways of appreciating people’s real lived experiences. Co-production within a participatory arts-based approach may help to improve the lives of marginalized and seldom heard groups by providing an opportunity to enhance dialogue on important societal issues linked to inclusion and exclusion. It can be both research and dissemination tool, enabling participants to become

L. A. Fenge (*) Department of Social Sciences and Social Work, School of Health and Social Care, Bournemouth University, Poole, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_26

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co-disseminators as their arts-based outputs can be powerful tools of dissemination with the potential to engage a wider audience than traditional research reports or papers. Specifically, this chapter illustrates discussion of the value of “performance poetry” as an arts-based research methodology with reference to two case studies that used the method. The “Seen but Seldom Heard” project worked with young people with disabilities and the Seldom Heard Voices project worked with homeless people. Both groups experience social exclusion and marginalization and embraced an opportunity to write and perform their work. Keywords

Arts-based methods · Participatory research · Co-production · Performative social science · Creativity · Voice

1

Introduction

A key challenge in qualitative research is how to represent the experiences and lives of research participants in an authentic and meaningful way. This links to a wider issue concerning the nature of knowledge, the ownership of knowledge production, and questions about what counts as valid knowledge (Fenge 2010). Prior to coming into higher education as a lecturer and researcher, the author of this chapter was a social worker, working directly with individuals and groups who experienced marginalization and oppression in their everyday lives. This background highlighted the importance of antioppressive practice both in front line social work and in research practice. This background shaped the author’s approach to research which was grounded in the principle of social justice and partnership working, and it was important to choose an approach which would give participants a true sense of control over the research process (Strier 2007). This led the author to consider the value of using participatory research methods which allow participants to co-produce the research. Arts-based approaches offer research practices founded on the principles of social justice, partnership, and co-production with participants using a wide range of creative arts-based mediums. Such activities are enjoyable in their own right and offer an accessible means of working with groups who are seldom heard in research. Arts-based research and arts-informed inquiry can be used by researchers to challenge the “limitations and oppressive features of traditional scientific research, opening spaces for experimentation of alternative approaches” (Butterwick 2002, p. 243). The aim is to engage with subjective experiences which promote diverse ways of knowing and experiencing the world and which acknowledge the multiple realities that exist in everyday life (Westhues et al. 2008). Arts-based research, therefore, enables the participants to frame their own experience. It provides multiple lens in which to understand human experiences through “the multiple creative ways of representing experiences and the different representational forms (medium) of expression” (Capous-Desyllas and Morgaine 2017, p. xv).

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Participatory arts-based research can change the dynamic between the researcher and participant so that they become co-researchers and co-learners in a collaborative journey (Fenge 2010). This is particularly important when working with groups or individuals who are socially excluded or marginalized and whose voices are often seldom heard within wider society. Such approaches can enable individuals to represent their “lived experience” using the language or arts-based medium that they choose, and ultimately this can be enjoyable and empowering for those taking part in the research process. Arts-based workshops can be fun and engaging for participants, and this may act as a motivating factor for committing to take part in a research project. Awareness of the role of “power” within research is central to this and includes consideration of methods which can engage participants as co-producers of new knowledge. Participatory arts-based approaches can offer a varied toolkit and cover many genres including poetry, writing, performance, visual art, painting, and photography and can be seen as “any social research or human inquiry that adapts the tenets of the creative arts as a part of the methodology . . . the arts may be used during data collection, analysis, interpretation and/or dissemination” (Jones and Leavy 2014, pp. 1–2). This chapter considers the use of “performance poetry” as an inclusive research methodology and dissemination tool. Discussion of this method of participatory artsbased research will be illustrated by reference to two different projects which used performance poetry with two socially excluded groups in the UK: young people with physical disabilities and homeless people. Both projects were underpinned by a commitment to Performative Social Science (Jones 2006) which offers a model in which tools and means of expression from the arts and humanities are used to enrich social science research processes, as well as the ways in which research findings are disseminated to create wider social impact. This can support dissemination of findings to new audiences that would not traditionally read research reports or journal articles, increasing the reach and impact of the research process and its outcomes.

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Arts-Based Research

Arts-based research has been classified as occurring across three major categories: research about art, art as research, and art in research (Wang et al. 2017). This chapter explores “art in research” and this describes a wide range of approaches which use arts-based methodologies to engage with the lives and experiences of research participants to co-create new insights. Such approaches to research offer a range of methods, which are particularly useful for engaging seldom heard groups or individuals in research, and enable them to express their experiences and feelings using a range of arts-based mediums (Furman et al. 2012). Working alongside artists and academics, participants can co-create new knowledge and ways of understanding which may challenge taken for granted views concerning the lives and experiences of marginalized communities. This can help to shift understanding of what counts as

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evidence and highlights the complexity involved in creating new knowledge (Boydell et al. 2012). The value of an arts-based approach is that it can develop understanding of both participant and researcher experience (McNiff 2008). Such approaches can also support co-dissemination of findings through Performative Social Science elements which involve participants as a central part of the dissemination process. As this occurs within an overarching participatory approach, it offers an inclusive approach for working with excluded voices to address issues of power, politics, and social justice (Reason and Bradbury 2001). Therefore, it is a powerful approach when working with disenfranchised groups and has been used across diverse groups such as with sex workers (Oliveira 2019), asylum seekers and migrants (O’Neill et al. 2019), and homeless people who have experienced family violence (Fairchild and McFerran 2019). Arts-based approaches offer a varied toolkit for researchers: for example, they may include creative writing or poetry, visual arts, or music and may enable a “creative space” in which participants can collaborate as co-researchers and co-creators. Such methods can be particularly engaging and enjoyable for participants who may relish the process of self-expression using different artistic mediums which enable them to frame the issues that are important in their lives. To illustrate the use of arts-based approaches, this chapter will explore the value of poetic inquiry, and specifically “performance poetry,” as both a research tool and method of dissemination, and will make reference to two different projects which used the method to engage with marginalized communities.

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Poetic Inquiry

Poetic inquiry is less recognized as a mainstream approach within qualitative research compared to other arts-based research methods (Bishop and Willis 2014). It can be used in a variety of ways as a research tool and can be described as a situation in which poetry is actively applied by participants and/or artist-researchers as a creative process in one or more phases of a research process (Wang et al. 2017). Six major poetic research strategies have been identified (Lahman et al. 2010): • Data or “transcription” poems whereby researcher/poet presents the voice and stories of others using the participants’ own words within a poetic format. • Participant poetry – in which research participants write their own poetry which is then treated as research data. • Autoethnographic poetry which explores the researcher’s personal experience of undertaking research. • Research experience poems which represent the researchers’ experiences in their study. • Cultural poetry research which explores poetry from an anthropological perspective. • Poetic allusion in which researchers draw on published poetry to use as references in their texts.

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This chapter is concerned with “participant poetry” whereby researchers work directly with participants to enable them to develop their own poetry and where the participant written poetry is treated as data. This approach to poetic inquiry has been described as “VOX PARTICIPARE” (Prendergast 2009, p. xxii), whereby a participatory action research model is used to engage participants to write their own poems or co-produce poems with other participants, artists, or researchers. Poetic inquiry is particularly useful when exploring issues of identity, place, and belonging and these are important themes when working with those from marginalized communities who may experience social exclusion (Hordyk et al. 2014; Hodges et al. 2014). Participant poetry is a creative process which captures the “subjective” experiences of participants lives, and it is important to acknowledge that traditional measures of validity are not appropriate criteria when working with “poetry as data” (HesseBiber and Leavy 2008).

4

Performance Poetry

Performance poetry is a diverse art form within poetic expression which uses “spoken word” as a powerful tool of self-representation and which is intended to be performed rather than just appear as a print format. The “performance” and relationship with the audience is key and the approach that poets take can be very varied. Some poets improvise in front of the audience, and others may chant, chat, sing, or dance as part of the performative element. What is central is the performative space between poet and audience, and in this creative space “you pass a poem to the audience through the words as embodied – literally by the rest of your human form. And the people listening and watching come back at you in an equally embodied way” (Rosen 2014). It is rooted in the sound of language and the meaning of language chosen by the poet. As a creative performance genre, performance poetry has been used to illustrate lived experience as well as issues related to social justice, and it can be viewed as a form of social activism. Performers thrive on the live interaction with the audience, and often this includes competing in front of live audiences as part of a poetry slam competition. It has been used as a tool to highlight silenced issues within society and to generate debate with an audience, for example, to unlock the silence around HIV and AIDS and enable exploration of the topic with an audience of young people (Moyo and Sibanda 2019). It has also been used to explore issues related to belonging or not belonging where it has been described as developing “self-reflexive practice that rethinks . . . the terms of community, belonging, and exclusion” (Noel 2011, p. 92). Within education settings, performance poetry has been used in teaching as a tool to engage marginalized students in literacy programs focused on validating lived experiences whilst promoting social justice (Camangian 2008; Ramirez and Jimenez-Silva 2015). The key element in performance poetry is the relationship between the performer and the audience. This performative space enables connectivity between the performer and the audience on an emotional level. This supports dialogue to take place,

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promoting challenge and encouraging members of the audience to critically reflect on their own attitudes, bias, and stereotypical ways of viewing the world. As such, performance poetry in research is part of a wider Performative Social Science (PSS) approach as it represents a fusion of the arts and social science which is grounded within relational aesthetics (Bourriaud 2002). As Jones (2006, p. 66) explains, Relational Art is located in human interactions and their social contexts. Central to it are inter subjectivity, being together, the encounter and the collective elaboration of meaning, based in models of sociability, meetings, events, collaborations, games, festivals and places of conviviality. Bourriaud believes that Art is made of the same material as social exchanges. If social exchanges are the same as Art, how can we portray them? One place to start is in our (re)presentations of narrative stories, through publications, presentations and performances.

PSS, therefore, enables a collective experience of coming together, and this can be used to illuminate experience and challenge stigma for marginalized groups. The following sections illuminate the use of performance poetry as an arts-based research methodology with reference to two case studies.

5

The Seen but Seldom Heard Project

The “Seen but Seldom Heard” project worked with a group of young disabled people using performance poetry to encourage them to reflect on their experiences of living with disability in an Ableist world and to empower them to challenge dominant societal perceptions of disability through poetry and performance. As a social worker who had previously worked with disabled children and their families, the author of this chapter was very familiar with the challenges that young disabled people experience in society including negative attitudes and prejudice linked to disability, which create barriers to education, employment, and social participation (World Health Organization 2011). Those individuals whose disability creates specific challenges linked to communication may be further marginalized and disempowered (Mackenzie et al. 2011). When the opportunity to undertake research with a local school for young people with physical disabilities occurred, it was important to use a methodology which would be “inclusive” for the participants and which would enable communication with young people’s everyday experiences of disability. It was decided that a participatory arts-based approach would offer creative opportunities to the participants and empower them to develop new skills to enable them to tell their own stories. Underpinning the project was an awareness of the three domains for disability research identified by Barton (2005): firstly, research should concern itself with issues of social justice, equity, and citizenship; secondly, research should be conscious of barriers to participation; and thirdly, the research should be transformative and develop understanding of the ways in which disability is socially produced (Barton 2005, p. 318). Methods of poetic inquiry (Prendergast 2009) potentially address all three of these areas as disability poetry has the potential to challenge

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existing individual and social preconceptions about disability (Scheuer 2011). The researchers were mindful that the methodology should be conscious of the barriers to participation and be as inclusive as possible of a wide range of diverse experience. Working closely with the school, steps were taken to ensure that all young people that wanted to take part would be supported to do so. This included the provision of scribes and communication aids such as the use of symbols or Makaton. For those without a physical voice, the use of technology to enable them to write and perform their work in front of a live audience was used, and the poetry workshops and live performances were captured on film. Ethics approval was given for this project by the author’s university with the consent of the young people, their parents, and the schools to take part in the performative elements being a key element. In discussion with the drama teacher from the school, it was agreed that performance poetry would offer a new creative arts-based genre to the young participants, an approach which they had not used before. Personal interpretations of lived experience can contribute to a sense of “shared identity” among disabled people (Peters 2000), and this offers the opportunity to collectively question dominant, largely negative, attitudes towards disability. Exploring cultural representations of disability enabled participants to challenge them, and through this process, they become active agents in the creation of both knowledge and culture (Dupré 2012). It was felt that performance poetry would enable the participants to be centrally involved in the development of “poetry as data” and in the dissemination of the research through the performative element. At the heart of the project was a commitment to ensure co-production with the young participants. The project occurred during the build-up to the 2012 London Paralympic Games, which helped raise the profile of disabled athletes alongside awareness of wider disability issues. The choice of using an arts-based approach was timely as the London 2012 Cultural Olympiad was the largest cultural celebration in the history of the modern Olympic and Paralympic Movements and included many arts and cultural events running alongside the games. The backdrop of the Paralympics enabled the project to explore representations of disability within the media and popular culture and how stereotypes of disability linked to passivity and dependence could be challenged (Barnes and Mercer 2010). Performance poetry offered a form of self-expression to participants through the words and imagery used to tell their own stories. Participants were able to develop their own creative potential through the process of writing and performing poetry, and this offered a way for them to explore identity and disability in a sensitive and meaningful way through words and performance (Edghill 2009). The project was a collaboration between university academics from a Faculty of Health and Social Science, Faculty of Media and Communication, and a local residential and day school offering specialist care and education to young disabled people from three to 19 years old with physical disabilities or complex medical conditions (and in some cases also additional needs including communication challenges, learning difficulties, and sensory impairments). A series of participatory performative poetry workshops were delivered in partnership with two performance poets to a group of between 10 and 15 young people, aged 14–20 years, to explore

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the nature of disability within society and their own experiences of being disabled. During the poetry workshops, the young people were shown how to craft and perform their own poetry and learnt more about poetic writing as genre. They learned how to express themselves through poetry and how to communicate their experiences and feelings effectively through creative means. The workshops used the media portrayals of Paralympic athletes as a focus for individually written and collectively authored poetry, which sought to enhance public understanding and confront negative perceptions of disability. As the workshops developed, the young poets began to use poetry to engage in conversations about issues, policies, and practices that affected them and others with similar experiences. Alongside the development of “poetry as data,” a key element of the approach was performative, and the dissemination of the project included film of the workshops alongside eight live performances of the work. Initially, the workshops were filmed to assist the research team in their observational research and to record interviews with those involved in the project. However, it soon became an integral tool for capturing and disseminating the views and experiences of the young poets. Alongside “live” events, film was used as an inclusive tool in disseminating outputs from the project. Events took place during the Paralympic Cultural Olympiad celebrations in Weymouth where the sailing events occurred in August 2012, performances at a number of arts festivals, and in 2014 the young poets were invited to perform their work to a selected group of Members of Parliament in London. It was important for the young people to perform their own work on stage, but as some of the young people’s difficulties in communication did not easily facilitate live participation at performance events, we integrated film of them writing or performing their work into the live presentation which insured their voices were included. Each poem on its own provides a specific viewpoint on disability, but when performed together as part of a public showcase, the cluster of poems provides various nuances that illustrate powerfully how members of the poetry group thought others saw them and how that made them feel. The performance and dissemination of the work required complex methods because of the need to consider every person’s needs and abilities. The poem below, “For the People Who Stare,” is an example of early work produced by the group that, when combined as part of a live performance with closeup footage of the pairs of eyes of each member, created a powerful audio and visual message: For the people who stare (by “The Poetry Sensations”) Get to know the person you’re staring at. What’s your problem? What’s your problem? Try to step into my shoes. Don’t. It makes me scared. It makes me feel sad. Everyone is different but judgments take over. I can’t do anything about it.

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People are always scared of what’s different. You are disabled to me. I am disabled to you. We are both aliens on this world. I am crazy but I’m just me, don’t look at my wheelchair. I am open like a magic door. I am pretty white teeth but yellow on the inside. I am an actor, gifted with every emotion. I am a titanium spine worth thousands on Ebay. I am my own person. I am a unique cloud, always different every day. I am Sean the funny sheep. I am a football Nickipedia. I am full of a thirst for knowledge. I want to see a change for the better. I am everything that I am, I can’t change. I wouldn’t change it for the world.

The performance element of the research had at its heart the empowerment of young people as a central part of the dissemination process (Hodges et al. 2014; Fenge et al. 2016), and the young poets became important commentators on social conditions relevant to their everyday experience while seeking to move their audiences closer to an understanding of what disability means for them. One of the greatest causes of stigma surrounding disability is the lack of direct experience members of the public have of disability, and performance was used sensitively to challenge discriminatory barriers and attitudes. The young poets were supported to achieve this by working closely with the two performance poets, their teacher, and the academic researchers to plan the live public performances and contribute suggestions to the editing of the film and other audio-visual materials. Such a collaborative process enabled each member of the project group to learn from each other. Another key output from the project was the development of a digital learning tool for use within schools which was co-developed with the young poets with the aim of raising awareness of disability issues. The poems became key elements of the digital learning tool which was narrated and presented by the young poets. The project not only challenged audiences to question stereotypical views of disability which “other” and marginalize disabled people, but it also had a transformative impact for many of the participants in terms of building confidence and enabling them to “voice” their experiences. One male participant aged 18 years shared that he wanted to express his story and show people that “disability isn’t all about the wheelchair.” Another young poet suggested that “writing helps me to explain to people that even though I find physical tasks difficult, my inner strength and courage strengthens my resolve and I will find a way to accomplish all that I want to do. So you see, even though I’m disabled I do have a great life” (Hodges et al. 2014, p. 1100). Despite the project ending over 5 years ago, the team have kept in contact with several of the young poets and have been delighted that taking part in the project acted as a springboard for their future performative careers. One young participant has now completed a degree in Drama and is focused on becoming an actor. Another writes and performs his work at festival and events all over the

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country, and despite having no physical voice, he uses a communication device within his performance to connect with the audience. Both have reflected positively on the impact the project had on building their confidence and aspirations to pursue write and perform in their adult lives, and as a result the impact of the project continues to ripple forward through their respective creative careers.

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The Seldom Heard Voices Project

The Seldom Heard Voices project built on the success of the Seen but Seldom Heard project which used performance poetry as an inclusive research method to explore young people’s experience of disability. The researchers were keen to explore whether the methodology would work with other seldom heard groups. As homeless people encounter multiple exclusions, including stigma and discrimination, which may make them hard to reach in terms of both research (Liamputtong 2007), it was felt appropriate to test the methodology with some of the most marginalized and invisible within society. It was important to use a methodology which enabled homeless people to co-produce new knowledge about the nature of homelessness as they have historically been excluded from participating in the process of policy and research about homelessness (Norman and Pauly 2013). A local homeless charity became a partner in the project, and they played an important role as gate keeper into the project through a facility-based sampling approach (Shaghaghi et al. 2011). Working with homeless people presented different challenges particularly in terms of recruiting participants and their ability to commit to regular attendance at the poetry workshops. Working closely with a homeless charity and local hostel allowed us to communicate directly about the project with those who used the hostel and offered access to a convenience sample of homeless men and women who used the facility (Fenge et al. 2018). There were no specific inclusion/exclusion criteria and the sessions took place within the hostel to provide a familiar venue for the creative workshops. To increase attendance, the sessions took place at a time when food was available in the hostel as it was felt that this might act as an incentive to participants to stay for the performance poetry sessions. Although this did help, issues linked to mental well-being made regular attendance a real challenge for some individuals. A real challenge of working with homeless participants was linked to the chaotic lifestyles of some which resulted in attrition and sporadic attendance at the fortnightly poetry workshops. High drop-out rates and poor attendance at research sessions have been identified as common features in research with certain vulnerable groups (Bonevski et al. 2014; Johnsen et al. 2008). Those using the hostel facility tend to move through the hostel and local area in an ephemeral manner and this resulted in sporadic attendance during the Seldom Heard Voices project. Although 15 individuals took part in the workshops over the course of the 10 sessions, attendance was often intermittent leading to challenges for the performance poet leading the sessions. Most participants were male although two women attended

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occasional workshops. A limitation of using a “facility” as a gatekeeper is that the project only reached those individuals who used the services offered by the hostel, and this may have limited a wider appreciation of what homelessness means to those who prefer to avoid contact with organizations offering support to homeless individuals. The skill of the performance poet who worked on the project was a key element of keeping participants interested in the project. His role was pivotal in creating an artistic space which offered opportunities for expression to people who do not readily fit into normative structures (Rawdon and Moxley 2016), and his previous experience of working with a range of excluded groups was invaluable. When sessions were well attended, there was lively debate around the topics and participants enjoyed the opportunity to explore language and imagery while shaping phrases and lines. Some took the opportunity to write poetry outside of the workshops and were often keen to share their work with the performance poet for constructive feedback. The aim of the Seldom Heard Voices project was to provide insights into the everyday lived experiences of homeless people, using their own words and language captured through participant poetry (Fenge et al. 2018). This provided an opportunity to explore issues related to identity, feelings of belonging, and feelings of being “othered” within wider society. From the outset, the researchers were mindful to create an atmosphere in the workshops which would reinforce human connections. The approach taken by the poet stressed connectivity through positive human emotions, focusing on communicating through “a good personal story” (Thomas et al. 2017). The performance poet shared examples of “group” poems with participants as a method to engage collectively with the participants experiences of homelessness and also created space for individuals to explore their own personal experiences. The words and poems which emerged through this creative process do not attribute structural or individual roots to homelessness but rather highlight how being displaced changes a person’s sense of self, place, and belonging (Vandemark 2007). This enables an audience to gain a deeper insight into what homelessness means to those that experience and helps to challenge negative or discriminatory views about homelessness as it communicates on an emotional and humanized level. The following group poems illustrate this. This is The Place: A Bournemouth Poem Group Poem (after Tony Walsh) This is the place where I am. This is the place where you meet your circle in the square at the bottom of the triangle. This is the place where it’s like a war and most of the time it seems we get only shrapnel This is the place where beggars get contributions be it silver or gold

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L.-A. Fenge Where a tenner drop is like a diamond This is the place where people follow their own shadows in endless circles where you are alone in the crowd, where you are either non existent or all eyes are on you the place of many hiding places, some in full view This is the place of sun, sea and skag of twenty three deaths in just ten weeks of dole offices that don’t give a shit and buses that just drive past This is the place of millionaires and Tory conferences This is the place where my children and grandchildren are and that makes it the most special place This is the place you are meant to be.

The group poem illustrates that “place” and “space” present stark choices which take place in a context of “warfare and shrapnel,” where choices pivot around eating or accommodation. The poem also depicts intersections of “sun, sea, and skag,” of affluence and poverty co-existing. Homelessness is both visible and invisible “the place of many hiding places, some in full view.” Yet these spaces also represent connectivity to family and friends, spaces which retain meaning and resonance across time, representing “the most special place” where my children and grandchildren are. It proved far harder to engage the homeless participants in the performative element of the method than in the previous project with young people with disabilities. Their chaotic lifestyles and ephemeral connection to the hostel meant that it was difficult to organize a live performance for them to attend. A key output from the project was the production of a book of participant poetry around homelessness used to raise awareness of the challenges of living on the streets (Seldom Heard Voices 2017). All participants were given a copy, and it was sold to audiences at events and has been used a learning resource for students to develop insights into homelessness. Money raised from the book was given back to the hostel to support further artsbased workshops. To try to capture participants reading their own work, the project team returned to the hostel some months after the end of the project with a cameraman after gaining ethics approval to film participants with their consent. News of this opportunity was shared via the hostel to put the word out on the street of the opportunity to “perform” the poems and be filmed. This would not appeal to all participants, but on the day four returned and were filmed reading their work. This has enabled the participants to be more directly involved in the dissemination of their work which has been

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disseminated at events and within teaching. One homeless poet was so enthused by the workshops that he has continued to write poetry and remains in contact with the research team who continue to encourage his writing. In 2018, the team offered him an opportunity to perform his work at a local performance poetry event, and he was able to give a powerful performance of his work in front of a live audience of 100 people. On a personal level, the project offered him an important means of expression, and although he continues to struggle with underlying health issues, he told the team that taking part in the project had been “lifesaving” for him.

7

Conclusion and Future Directions

This chapter has explored how arts-based approaches to research can offer inclusive methods when working with marginalized populations or seldom heard groups. In particular, it considered how “performance poetry” can be used to generate “participant poetry” as data, alongside involving participants in performative dissemination processes. Co-production of new knowledge through participant poetry, alongside dissemination through the performative element, sits broadly within a Performative Social Science approach which offers an opportunity to change hearts and minds through an emotional and intellectual connection with the audience. Such methods raise obvious issues concerning control, authorship, and representation, and a key focus is on negotiating who “owns” the creative output, whether poems, performance, or images. This should be a central focus of the ethical approval for such project which is co-produced with participants. In both projects illustrated in this chapter, it was made clear to the participants from the outset that creative workshops and creative outputs would be integral to the research process. However, it was stressed that the creative rights to their work would be their own. Both case studies relied on partnership working with key gate keepers that enabled access to the target groups. This was particularly important when working with homeless participants as the hostel was able to communicate directly with them about the project and represented a trusted facility which provided a familiar venue for the sessions. Within the Seen but Seldom Heard project, the young poets took responsibility for their work and made individual and collective decisions about how they wished to represent their experience(s), and were able to stipulate how they wanted the poems to be used, performed, and presented. It was acknowledged that within this process, it would have been impossible to guarantee anonymity due to the small sample size and the performative element of the research. Although the performative element was restricted in the Seldom Heard Voices project due to the challenges of working with a more chaotic population, those that took part in the “film” were aware that anonymity could not be achieved within a filmed performative element, and were happy to consent on that basis. Creating societal impact from the work in terms of enabling the “voice” and lived experience of seldom heard groups to find representation is a central aim within art-based research, and particularly in performance poetry. Poetic inquiry can enable

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participants to collectively question society’s attitudes and actions towards them, serving to empower and promote the voices of those who may otherwise be silenced. This can help to construct alternative forms of representation that challenge dominant narratives and perceptions and help serve as a catalyst for change. Impact from performance poetry projects, therefore, happens on personal (the individual poet), social (the audience), and structural (challenging discriminatory views and structures which exclude disabled people) levels. Participant poets in both projects gained individually from taking part and have spoken movingly of the individual impact of what taking part meant to them. Writing performance poetry allowed participant poets to share their lived experience and empowered them to be heard, often for the first time. Informal audience feedback suggests that the audience(s) employed their own interpretative frames of reference to make sense of what they read, heard, or observed and that they were touched on both emotional and intellectual levels. This often challenged their taken for granted understanding, and for some may have led them to take actions which they would not have considered without exposure to the performance poetry. On a structural level, both projects produced insights into societal barriers which serve to “other” and discriminate against those who come from excluded groups, whether they be young disabled people or those who experience homelessness. For researchers seeking to find inclusive methods of research, arts-based methods offer a varied toolkit which may enable voices that are seldom represented in research to find an appropriate medium of expression. Arts-based outputs are also key tools of disseminating research findings and can support participants to be both co-producers or new knowledge and co-disseminators of key findings. This can be empowering for all involved.

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Power, Authority, and Voice Democratizing Research with People with Dementia

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Elaine C. Wiersma, Charlotte L. Clarke, and Bill Heibein

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 A Note on the Dementia Journey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Setting the Stage: The Changing Context of Dementia “Culture” . . . . . . . . . . . . . . . . . . . 1.3 Why Inclusive Research with People Living with Dementia? . . . . . . . . . . . . . . . . . . . . . . . 2 Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Principles and Levels of Involvement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Research Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Motivations of People with Dementia to Participate in Research . . . . . . . . . . . . . . . . . . . 2.4 Setting Research Priorities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 The Research Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Authority . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 The Process of Engagement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Creating Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Creative and Arts Based Approaches to Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 A Note on Research Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Process Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Voice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Data Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Acknowledging Contributions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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E. C. Wiersma (*) Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada e mail: [email protected] C. L. Clarke Social Sciences & Health, Durham University, Durham, UK e mail: [email protected] B. Heibein North West Dementia Working Group and Centre for Education and Research on Aging & Health, Lakehead University, Thunder Bay, ON, Canada © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_27

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4.3 People with Advanced Dementia and Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 543 5 Conclusion: Research Is a Relational Endeavor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 543 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 545

Abstract

The involvement and engagement of people living with dementia in research has been changing over the years, with people with dementia now not only being participants, but being involved as coresearchers. Participatory research raises questions about power, authority, and voice, and these questions infuse all aspects of the research process. Power includes how people with dementia are involved in decision-making and who is on the research team. Authority includes creating safe processes, creating safety, involving people with dementia in data collection, and using creative and arts-based approaches to research. Voice includes involving people with dementia in data analysis, acknowledging contributions, and finding ways for people with more advanced dementia to participate in research. Finally, we conclude with a discussion about how research is a relational endeavor. Keywords

Dementia · Inclusive research · Engaging people with dementia · Participatory research

1

Introduction

The involvement and engagement of people living with dementia in research endeavors has been swiftly changing over the years. From years where people with dementia were considered “subjects” of research to current initiatives where people with dementia are engaged as foundational and critical coresearchers and all manner of involvement in between, the landscape of dementia social research has seen a marked shift (Clarke et al. 2020). Indeed, for very many years, people with dementia did not themselves exist in research; their presence subsumed into being an appendage to a “carer,” and it was the carer’s voice that was projected through research endeavor. It is important to note, however, that the full and true engagement of people with dementia as equal coresearchers let alone research leaders remains relatively uncommon, although is increasing with frequency (cf. Clarke et al. 2020; Nedlund, Bartlett, & Clarke 2019; Swarbrick et al. 2019). Participatory research raises questions about authority, power, and voice and these questions infuse all aspects of the work that we do as researchers. The engagement within society of people who are marginalized is co-constructed through the everyday practices that take place between them and those around them. This is inherently political, positioning people as active and activist in the relationship of their lives with their communities (Bartlett and O’Connor 2010). As such, research practices that aspire to be participatory are mandated to equalize authority, power, and voice; achieving this is, however, reflective of ongoing societal struggles of the democratization of knowledge, perceptions of expertise and competence, and ultimately questions what it takes to bring humanity into our research work.

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The implications and impact that research has on the lives of people with dementia and the potential for both great benefit and significant harm means that it is imperative to have a fulsome discussion about research practices that equalize authority, power, and voice with people with dementia. We must critique too those practices of “protection” that can also serve to undermine autonomy and participation, with the complexity of the intent to do no harm unraveling in the face of multiple versions of how to act in “best interest.” This chapter will discuss social research, which includes research related to quality of life, quality of health and social care, and other social dimensions of dementia, although many of the principles may also apply to biomedical and health care research. It should also be noted that one of the coauthors, Bill Heibein, lives with a diagnosis of dementia. We have coauthored this chapter together, with Bill providing guidance and reflections on the key points in this chapter. In addition, we have included several quotes from people living with dementia from a variety of studies that we have been leading to illustrate our points. This is done deliberately to ensure that the voices of people living with dementia are part of this work – that not only are we writing about participatory research practices, but we ourselves are practicing this throughout the chapter. We aim to not be tokenistic by only including one person with dementia as a coauthor but ensure that we have found ways to embed the voices of people living with dementia throughout the chapter.

1.1

A Note on the Dementia Journey

In most of this chapter and in the research that has currently been conducted, engaging people with dementia is typically done when people with dementia are in earlier stages of their dementia journey. This means that people are able to give their own informed consent to participate in research, and that they are able to participate with spoken language communication in research processes. However, we cannot write a chapter such as this without addressing the unique challenges of people with later-stage dementia who may experience challenges in communication and may not be able to fully participate in the research process as we might expect. Utilizing a variety of research methods can ensure that people with more advanced dementia may still be able to participate in research. The challenge lies with researchers to develop more inclusive methodologies and methods that enable people to be involved. This will be addressed toward the end of this chapter.

1.2

Setting the Stage: The Changing Context of Dementia “Culture”

The culture of social research particularly in dementia studies has been changing rapidly over the last few decades. Both the changes in dementia “culture” as well as research practices have led to this change. The more widespread adoption and acceptance of social constructionism, qualitative research, and participatory and

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critical approaches began to become more widely adopted as valid forms of “knowing” from the 1950s onward (Borda 2001). Over the last number of decades, a rise in calls for more participatory research approaches, particularly with marginalized and vulnerable populations, has been witnessed. As Western societies have shifted to become more inclusive of diverse populations, particularly as marginalized groups have fought for equality, research practices have also changed. Marginalized populations have demanded to be “at the table” when decisions are made that affect their lives, and have notably changed the ways in which these groups are seen within Western cultures (Oliver 2009). A prime example of this is the advocacy work of people with disabilities, who throughout the 1970s onward proposed and advocated for a social model of disability, differentiating between disability and impairment, with a recognition that disability was caused by society, not because of inherent quality of the person with the impairment (Oliver 2009). The common refrain of disability activists – “nothing about us without us” – permeated disability culture and research (Oliver 2009). This social model of disability was most often adopted for those with physical disabilities; cognitive and mental health issues were often not included in this early advocacy work. In fact, it took many years for these disability theories to permeate dementia studies; it was not until 2015 that a report was issued exploring the possibility of using a social model of disability within the dementia context (Mental Health Foundation 2015), although some would argue that the infusion of critical disability theory began earlier (Bartlett and O’Connor 2010). The philosophies and approaches to dementia care have also been changing over the last number of decades. The seminal work of Tom Kitwood (1997) promoted personhood of people with dementia and suggested that it was as much the physical and social environments of people with dementia that were disabling as was their neurocognitive impairment. This early work dramatically changed the ways in which professionals viewed dementia, as people strove to change practices based on his work. As the “tragedy narrative” of dementia (Mitchell et al. 2013) was being challenged, health care too took up the challenge to be more person-centered. Challenges to health care and broader health policy decisions have also been impacted by the move toward patient and public involvement. Early work from Cheston et al. (2000), Carroll et al. (2005), Lorentzon and Byran (2007), and Cowdell (2008) called for the increasing involvement of people with dementia in service planning and service evaluation. In 2007, ten years after Kitwood’s seminal work, Bartlett and O’Connor published a paper on social citizenship and people with dementia, the beginnings of their influential 2010 book Broadening the Dementia Debate: Toward Social Citizenship. This work transformed dementia culture, and those academics and professionals utilizing a social citizenship lens emphasized the roles that people with dementia did, could, and should play in changing social structures, challenging the stigma of dementia, and changing engagement processes where they were involved and helped to shape decisions that impacted their lives. It should also be noted that Bartlett and O’Connor’s work, profoundly influential as it was and still is, was also documenting and theorizing about changes they had observed of the increasing involvement and

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advocacy of people with dementia themselves. People with dementia, beginning with individuals who formed the original Dementia Advocacy and Support Network International (DASNI), individuals of the Scottish Dementia Working Group (SDWG), individuals of the European Dementia Working Group, and individuals of Dementia Alliance International (DAI), along with regional and local groups (such as the Ontario Dementia Advisory Group (ODAG) and the North West Dementia Working Group (NWDWG) in Ontario, Canada), fought for their rights and voices to be heard. If not for these early advocacy champions, the movements toward full rights and inclusion of people with dementia would likely look very different today. It is to the credit of these champions that we are even invited to write a chapter about research that is inclusive of people with dementia. While the changes in disability and dementia culture, as well as research culture more generally, have led to the increasing involvement of people with dementia in research, policy, and practice, it is important to emphasize that although these practices are changing, there is a long way to go to be fully inclusive of people with dementia. Overall, research still tends to focus on caregivers and health care systems, rather than focusing on people with dementia and their lives, and the research endeavour still more often excludes than includes people with dementia. There is still significant change that needs to occur, but the move is well on its way.

1.3

Why Inclusive Research with People Living with Dementia?

While the research culture in dementia studies has been changing, it is still noteworthy to ask the question of “why”? Why is it imperative to involve and include people living with dementia in research? What values underlie these inclusive research practices? As noted earlier, people with dementia have been advocating for inclusion in all aspects of decisions that impact their lives, but often are excluded. Since research is not only about finding answers to questions but also serves to shape a body of knowledge, having people with dementia involved in research is critical. The cultural narratives of dementia that are shaped by research should be influenced by people with dementia themselves. In addition, anyone should have the right, not just the privilege, of being involved and engaged in research. Unfortunately, with this disease, a lot of the people that we deal with – we being people who have been diagnosed – people we deal with, there’s a general feeling or stigma that goes along with this that says we’re no longer capable of being involved in [having a] say as to what will affect us. We’ll be told what we’re going to do, not have input into what we want. -Quote from a person with dementia, From the Inclusion Study led by Wiersma We have structured our ideas around three critical concepts mentioned at the beginning of the paper: power, authority, and voice. While these key concepts

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overlap, we have attempted to differentiate between different research processes and practices throughout the paper. • We refer to power as questioning the levels of involvement of people with dementia (from “subject” to researcher) and who holds the power over the research process. We discuss power in three key ways: the levels of involvement of people with dementia in the research process, the motivations for people with dementia to participate in research, and research team structure. • We refer to authority as the “legitimacy” of the research and who ultimately has a say and a stake in the research process. Throughout this section, the process of engaging people with dementia, creating safety, setting the research agenda, and expanding traditional ways of data collection will be discussed. • We refer to voice as how we ensure that the voices of people living with dementia are privileged in the work. We focus here on collaborative data analysis, acknowledging contributions, and the involvement and participation of people with more advanced dementia. Finally, we end with a discussion about the primacy of relationships, and about how positive and respectful relationships underlie good research.

2

Power

2.1

Principles and Levels of Involvement

Arnstein’s (1969) ladder of participation is taken to guide our discussion about how to involve and include people with dementia in research. Arnstein’s ladder of participation, while not without its limitations, provides a helpful point of departure to discuss appropriate ways to engage people with dementia. Throughout this, we layer in information from various groups of people with dementia who have created guidance for researchers on engaging people with dementia. Arnstein’s (1969) ladder was originally designed to describe citizen involvement in community planning processes, but is appropriately used in a variety of settings. There are eight steps on Arnstein’s (1969) ladder, intended to illuminate who has power when it comes to making decisions. The steps include manipulation and therapy, labelled as nonparticipation, where individuals are not able to participate in decisions, but rather are educated about issues, and the work of decision-makers is to obtain support for various initiatives. The next three steps – informing, consultation, and placation – involve a variety of strategies such as ensuring citizens are fully informed of the issues and decisions, inviting feedback, and involving token people on committees. These three steps are labeled as tokenism. Finally, the last three steps include partnership, delegation, and citizen control. These steps include shared decisionmaking in partnership, to citizens taking control of the entire process. These steps are labeled as citizen control. In the case of engagement in research processes, clearly there are a wide variety of practices from nonparticipation to citizen control.

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Research Examples

Project A (Clarke et al. 2018a, b, 2020) – co-applicants in this research team, funded by the Economic and Social Research Council, included two voluntary sector organizations that represented people living with dementia (the Mental Health Foundation and Innovations in Dementia). The project team members did not themselves have a diagnosis of dementia. In this approach, the collective rather than an individual understanding of living with dementia was represented but this was at arms’ length and mediated through the two partner organizations and their employees without dementia. Project B (Clarke, Wiersma, Watson, Keyes & Houston 2019–2022) – co-applicants in this research team, funded by the Alzheimer’s Society UK, included one person with a diagnosis of dementia who has extensive experience as a dementia advocate. In this approach, both individual and collective understandings of living with dementia were forefronted in team discussions but there was a reliance on the one individual. Project C (Gambier-Ross, Clarke, Wilkinson & Woolnough 2017–21) – co-applicants in this research team, funded by the Alzheimer’s Society UK, did not include anyone with a diagnosis of dementia. However, the Alzheimer’s Society require research that they support to have “monitors” – lay people with experience of dementia through diagnosis or caring – who meet with the research team twice a year, bringing their experience and expertise to inform the research and also reporting back to the funder, thus introducing a process of accountability for lay involvement. Project D (Wiersma et al. 2016) – co-applicants on this research team, funded by the Canadian Institutes of Health Research, included three people with dementia on the research team. Throughout the research process, three advisory hubs consisting of around 20 people with dementia and 20 care partners and service providers guided the research process and provided input.

. . .the idea of there being intentionality in making room and including that voice is important because I think in cases where we assume being at the table means the voice is going to be heard. It often doesn’t happen because of the power dynamics . . . so just making sure that it’s very intentional. -Person living with Dementia, Inclusion Study

2.3

Motivations of People with Dementia to Participate in Research

There has not been a significant amount of research on the motivations for people with dementia to participate in research, although there have been personal anecdotes and other research aiming to better understand the motivations and experiences of people with dementia in participating in advocacy work (Bartlett 2012, 2014). Motivations to participate in research may, in fact, be similar to the motivations of people with dementia to participate in advocacy work – to contribute to the positive work about

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dementia including challenging stigma, to participate in meaningful work, and as a continuation of professional roles (Bartlett 2012, 2015; Waite et al. 2019).

My Motivations to Participate in Research (Bill Heibein)

I have always been involved in the community throughout my life and participating in research is a way for me to still be involved in things that are going on in my area of interests and around me. I will participate in any research project related to exercise, physical activity, and other initiatives about living well with dementia. I have been doing very well with my diagnosis for the last 20 years, and one of the reasons for this is because of the many things I am involved in. I want to have the opportunity to give back to my community and to encourage others living with dementia. Participating in research gives me a chance to stay involved in the community. It gives me the opportunity to hear what other people are thinking and doing, and to hear new ideas. When we break off into different discussion groups, everyone might have their own interpretation of what the topic is. And then I’m learning what other people are thinking about. It also gives me a chance to talk to people and to get to know new people. Everything fits together.

2.4

Setting Research Priorities

The Scottish Dementia Working Group (SDWG), in their document on core principles for involving people with dementia in research (2014), emphasized the need for people with dementia to not just be involved in research, but that research priorities should be influenced and shaped by people with dementia. In Canada, Bethell and colleagues (2018) reported on the Canadian Dementia Priority Setting Partnership funded by the Alzheimer Society of Canada to engage people with dementia, families, caregivers, and health and social care providers to identify important topics and questions for dementia research in Canada. The first key priorities included addressing stigma, emotional well-being, and the impact of early treatment for people with dementia. These priorities have now been adopted by the Alzheimer Society of Canada to guide their work (ASC n.d.). Although people with dementia were not the only participants in the study, this is one example of how people affected by dementia have been involved in setting research priorities.

2.5

The Research Team

As researchers, it is important to reflect on who is on one’s research team and why. In many instances, people with dementia are excluded from this level of involvement, and are merely seen as participants in research, rather than as coresearchers. Inclusive practices with people with dementia as research participants are discussed below but the focus is on including people with dementia as coresearchers.

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But the other thing for me that came to light very quickly was, because I was diagnosed so very long ago and had sat on so many committees and fought to be heard, what has absolutely blown me away is to be able to sit on a committee – one, where there’s not only just one person with dementia, but there’s three at the level we’re at now, plus all the ones that are involved in the [advisory] hubs. That, to me, just never ceases to amaze me and to know that the people that are facilitating these meetings and sitting at the table at these meetings are hearing each other. And for me, that’s pretty astounding ... It tells us that we are stepping forward, even though you have those days where you think – I’m just spinning my wheels. So that was a huge thing for me to see so many persons with dementia actually sitting at the table and being involved and being heard. -Person living with dementia, From the Self-Management of Dementia Project by Wiersma et al. Every person involved in the research team typically brings a specific area of expertise to the research project and recognizing this is a critical part of participatory processes (Austin 2015). As the SDWG (2014) states in their core principle for engaging people with dementia in research, knowledge comes from all kinds of places. Involving researchers with necessary areas of expertise is important, as is ensuring that these researchers are committed to the participatory process. Involving people with dementia as coresearchers ensures that researchers are not only paying attention to the lived experiences and expertise of people with dementia, but that research practices are sensitized to the specific needs of people living with dementia. It also ensures the credibility of our work to people living with dementia, knowing that researchers are committed to full engagement. To ensure that the involvement of people with dementia is not simply tokenistic, researchers should pay attention to the power balance within the research team. When possible, it may be prudent to involve more than one person with dementia so the individual with dementia does not feel marginalized within the research team. This ensures not only a more equal power distribution, but also ensures that people with dementia feel a sense of safety to share their perspectives and thoughts. Swarbrick et al. (2019) advocate for the inclusion of people with dementia in all phases of the research, not merely being subjects or participants. Involving people with dementia as part of the research team can assist in ensuring that research is being guided by people with dementia. Questions for Reflection: • Where does my research fit in the continuum of engagement? Am I engaging people with dementia meaningfully? Is this level of engagement appropriate for this work? • Have I reflected on power dynamics and how this may impact my research? • Are people with dementia involved in shaping my research? In what ways?

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3

Authority

3.1

The Process of Engagement

It is not simply enough to include people with dementia as coresearchers on the research team. As researchers, we need to ensure that we are changing our process of engagement to ensure that people with dementia are fully included as part of our team, that decisions are made collaboratively, and that people with dementia feel safe to have a voice within the team. Dupuis et al. (2012) outlined an “authentic partnership” approach to people living with dementia in which they acknowledged that people with dementia were often excluded from decisions that impacted their lives. As Dupuis et al. (2012, p. 431) state, “We must actively involve them [people with dementia] in decision-making to the fullest of their abilities, and support their involvement using whatever means necessary.” One of the guiding principles of their model of authentic partnerships includes a focus on process. There are several ways in which inclusive processes can be created. First, it is important to start off the process of engaging the research team with a candid discussion about processes and procedures and what is going to work well with everyone (Gove et al. 2018). How frequently should you be meeting? How should agendas and notes get sent out? When do people want the agendas and notes? How will you facilitate discussion as a team and ensure that everyone has a voice? By setting out these processes in a collaborative way from the beginning, a sense of safety will begin to be created and a process of meaningful engagement will begin. Starting the collaborative research by ensuring everyone has the same understanding is critical. Early discussions about roles and responsibilities are important (Gove et al. 2018). Everyone comes to the research with various capabilities and expertise, and discussions about expectations, roles, and responsibilities, as well as preferences of involvement, can set the stage for a successful collaboration. Ensuring that people with dementia have the training they need to participate is also important. Tanner (2012) held preparation sessions with coresearchers with dementia to obtain feedback on interview content and structure and to practice interviewing skills. Since interviews were conducted with Tanner and a person with dementia, discussions about the roles of each individual and how to conduct interviews were discussed. By making these types of decisions collaboratively, as well as ensuring that people with dementia are well prepared to be coresearchers, they were able to enhance the success of the participatory research process.

3.2

Creating Safety

Creating a sense of safety is an important part of the research process, particularly when involving people living with dementia who may have not been involved in research before, and who may find the environment of academics, researchers, and professionals intimidating (Dupuis et al. 2012). Waite et al. (2019) found that an important facilitator to coresearch for people with dementia was a feeling of safety.

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A feeling of safety can be created by positive relationships with the research team members, as well as by people with dementia’s acceptance of their diagnoses, enabling them to speak openly about it (Waite et al. 2019). Creating safety occurs when researchers ensure that people with dementia’s opinions are valued, when people with dementia have an opportunity to speak, and when processes are adapted to ensure the full participation of everyone, particularly people with dementia (Dupuis et al. 2012). Asking for feedback on the meetings and the research process can also create a sense of safety, as people with dementia know that the researchers are committed to creating a safe space for the inclusion of everyone (Dupuis et al. 2012).

3.3

Data Collection

Qualitative research with people with dementia typically involves interviews and participation observation. Several articles have been written on how to conduct interviews effectively with people with dementia. Sherratt et al. (2007) suggested that utilizing qualitative research could be more effective with people living with dementia. Notably, McKillop and Wilkinson (2004) discussed some important considerations for researchers when conducting interviews with people living with dementia. Conducting interviews in safe and quiet places, at times of the day that work best for people, reminding people that they can stop the interview, and being friendly and empathetic were all important recommendations (McKillop and Wilkinson 2004). Novek and Wilkinson (2019) also outline important considerations in research with people living with dementia, such as language, communication, and dealing with distress. Additional recommendations include introducing the purpose of the interview, ensuring appropriate language use, ensuring boundaries, involving care partners as appropriate, and conducting interviews in appropriate places to ensure confidentiality (Cridland et al. 2016; Beuscher and Grando 2009). While traditional qualitative research methods are often used with people living with dementia, it is also important for researchers to utilize alternative methods (Phillipson and Hammond 2018). Using various creative methods of data collection can enhance the involvement of people living with dementia and can bring out additional information, providing cues for recollection, and engage people with dementia differently. For example, walking or “go along” interviews originally conceptualized by Carpiano (2009) is being increasingly utilized as a research method for people living with dementia (cf. Bartlett and Brannelly 2019; Cook 2018; Odzakovic et al. 2020; Phinney et al. 2016). The go-along method enables researchers to go with participants to elicit information about people’s lived experiences of place (Carpiano 2009). This method can be particularly helpful with people living with dementia, as the environment can provide additional cues for recall and sharing stories. Walking interviews were used in Project 3 above, and by Barrie (2017, 2019) to explore how people with dementia experienced “going out” and were a valuable means of understanding how people interacted with their environment and drew on cues to be landmarks for them in shaping their journeys.

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Moreover, walking interviews helped to shift the power dynamic, with the person with dementia becoming the leader and showing the interviewer the route and sharing their interests in places along the journeys (Barrie 2017, 2019). The diary interview method has also been used and adapted by Bartlett (2012). In her work about the campaigning activities of people living with dementia, Bartlett (2012) modified the diary interview method by asking participants to keep a diary including written, photo, and audio forms, to share insights into the research process as well as in-depth “real time” insights into their campaigning activities. Bartlett found that using a flexible diary method allowed participants more control over their data, what they shared in their diaries, and when they shared it.

3.4

Creative and Arts-Based Approaches to Research

In addition to modifying research methods, there are a number of creative and artsbased approaches that researchers have been utilizing more frequently. Due to the potential limitations with recall, verbal reporting, and communication that can pose challenges to people with dementia, innovative approaches to research are important (Phillipson and Hammond 2018). Phillipson and Hammond conducted a review of research to explore the various innovative methodologies that researchers were using. Based on the review, they found five main types of methodologies used: (1) case studies, (2) action and coresearch, (3) visual materials, (4) participatory methods, and (5) ethnography. Case studies used a variety of data collection methods, but enabled an in-depth understanding of specific issues and experiences (Phillipson and Hammond 2018). Action and coresearch have become increasingly common as discussed earlier, and involved people with dementia as coresearchers, interviewers, and data analysts (Phillipson and Hammond 2018). Visual methods incorporated producing photographs and films, and assisted in communication with people with dementia (Phillipson and Hammond 2018). Participatory methods involved creative processes where people with dementia were engaged in filmmaking, design, writing, acting, and other productions (Phillipson and Hammond 2018). Finally, ethnographic approaches were used to obtain people’s experiences of a variety of topics such as material culture and neighborhoods (Phillipson and Hammond 2018). The opportunities for innovative approaches, particularly those that use visual methods, can provide increasing opportunities for people with dementia to engage in research, including those with more advanced dementia. Participatory research extends the framing of “research” to be also inclusive, steps that may be conventionally seen as knowledge exchange and impact-generating activities. Because participatory research blurs the distinction between the researcher and the researched, the period of participant engagement in research is not always confined to data collection. In study A above and also in Clarke and Bailey (2016), arts-based approaches were used to communicate the findings of the research projects in the form of films (Jack and Jill 2014; Michael’s Map 2016 – both available at https://vimeo.com/channels/1148563/188113371) and live performances (for example, Jack & Jill and the Red Postbox, Edinburgh Fringe Festival 2013; The Ties That

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Bind, Edinburgh Fringe Festival 2017). In these arts-based approaches, professional actors played the part of people living with dementia with the scripts drawing on the research interviews with people with dementia and performing to an audience that often included people living with dementia. The audience are themselves critical participants in the construction, presentation, interpretation, and representation of the research as they in turn interpret the performance as they engage with it and then represent the key messages that they took from the performances into postperformance discussions or with family and friends afterwards (Clarke et al. 2020). Some Specific Recommendations: • Ask your partners with dementia what they are thinking and feeling about the process and their involvement. Have an individual conversation with them to encourage a safe space for them to share what is working well for them and what needs to be changed, and then discuss how to make those changes. • Have times for reflection as a team (Dupuis et al. 2012). Create space to reflect on the research process and what is working well for people. • Reflect on how decisions throughout the project are being made. Have people’s voices been heard and listened to? • Discuss how to make meetings accessible to people. This might mean meeting them at a train station and accompanying them to a meeting venue; it could mean taking the time to go through the agenda earlier in the day so that someone knows what to expect and has had time to consider what they want to raise in the meeting; include frequent pauses and breaks in meetings; and ensure that people have a way of indicating that they want to say something and time to express themselves. Questions for Reflection: • Have we had a discussion as a research team about processes? Do we revisit these decisions regularly to ensure that we have adapted as needed? • Have people with dementia had a say in these processes? • Have we had clear discussions about roles and responsibilities of everyone on the team? • Have all research team members been given the training and information they need for the various roles and work they are asked to do? • Have we thought about different ways to collect and analyze data to ensure people with dementia can participate most effectively? • Have we extended our understanding of period of the research to also include how we communicate the research findings in a participatory way?

3.5

A Note on Research Ethics

The subject of research ethics and approval is a tricky one. While there are many standard ethics principles and practices across countries, there are some differences in terms of how various countries approach capacity and consent as well as the right

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to participate in research. West et al. (2017) conducted a systematic review of the current evidence on ethical challenges in dementia research. In their analysis of 29 articles, they found key themes emerging. First, they found that research risks versus protection (or “do no harm”) was a critical component of discussion in a number of papers. Issues around consent, the burden of research, as well as the assessment of people with dementia’s abilities to understand the risk of participating in research emerged, as well as discussions about advanced directives and the challenges of proxy consent. While it is impossible for us to detail the various approaches in different countries to these issues, there are a few things that we want to emphasize in terms of research ethics. First, although there may be challenges with institutional and organizational research ethics boards, it is imperative that we recognize that we all have the same goal – to ensure that people who are vulnerable are protected from harm and that research is conducted in an ethical fashion. Working with research ethics boards to educate them about people with dementia, including having people with dementia participate in this process, can go a long way to ensuring that research ethics boards are sensitive to the needs of people with dementia. Second, as researchers, we bear responsibility to share insight and be transparent about the research ethics process with people with dementia and care partners. These processes at institutional levels are often unknown to the general public and those not involved in research, so it is incumbent upon researchers to explain these processes to people with dementia and their supporters. Writing information letters and consent forms in easy-to-understand terms and formats for people with dementia and their supporters is important in the consent process (Sherratt et al. 2007). In addition to this, explaining information letters and consent forms verbally is also critical. Giving people enough time is fundamental to ensuring people can comprehend the information in these written documents.

3.6

Process Consent

In 2008, Dewing introduced a concept of consent specifically for research with people with dementia called “process consent.” While informed consent is typically given at the beginning of a research project, Dewing suggested that at all phases of the research, consent should be obtained from people with dementia. Consent is typically based on cognitive competence (McKeown et al. 2010), which has the potential to exclude people with more advanced dementia. If people with advanced dementia are not able to give their own informed consent but a proxy or substitute decision-maker gives consent for them, assent from the person with dementia is required at all phases – meaning that the person with dementia is being asked about his or her participation, and is agreeing to participate (Dewing 2008). While many researchers rely on proxy consent (with variations between countries of the terminology used or ability to deploy this approach at all), people with dementia can inadvertently be excluded from the consent process. Process consent assumes that people with dementia can make choices and communicate their desire to participate

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in research when the process is modified to be accessible for them (Dewing 2008; Murphy et al. 2015). While process consent does not bypass the proxy consent, it does ensure that people with dementia are included in the consent process whether or not they are considered legally capable of consent, and ensures that at various times throughout the research consent is obtained from people with dementia (Dewing 2008).

4

Voice

Critical to participatory research is that “hearing” the voice of participants is insufficient – we must ensure that the message from participants is not then appropriated by academic researchers and analyzed and communicated onward through the voice of the academic perspective. This appropriation (or colonization) of data strikes to the heart of questions about whose data this is and what continuing “ownership” of data those who provided the data as sample participants have. It is particularly challenging in research with people with a diagnosis of dementia because of the analytic and communicative skills required at this stage of the research process. So do we “hit and run” with the data that has been collected – or remain in a participatory way of working and challenge our methodological range to secure the continuing engagement of people with dementia? These issues are explored below but there are no answers, simply critical questions that must be asked in our pursuit of a more democratic form of research.

4.1

Data Analysis

So far, ways in which people living with dementia have played a part (and on occasions led) the designing and management of research projects and participated in data collection have been discussed. There are only a few examples of people participating in the processes of data analysis (Stevenson and Taylor 2017; Clarke et al. 2018a, b, 2020), yet this is a key part of any research process in which the insights of people with lived experience brings a sensitivity that augments the theoretical sensitivity of academic researchers (Mills et al. 2006). A standard approach to trustworthiness in qualitative research is member checking, in which an interview transcript is returned to the interviewee for their review (Liamputtong 2020). We can go further, making drafts of findings and publications available to participants for review. For people living with dementia, this ensures that they are not only aware of research findings, but that there is an opportunity to correct any misinformation, add further explanations of perspectives, and be confident in what is being published. Mitigating against these approaches are the time lapse between interviewing and receiving a transcript or, even more so, a draft of findings, such that someone may not have any recollection of the interview. Project A (Clarke et al. 2018a, b, 2020) was designed as secondary data analysis of interviews with people with dementia. During the secondary data analysis, we

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switched repeatedly between theory-driven analysis of a large volume of interview transcripts and workshops with people living with dementia. The former was led by academic researchers and the latter designed to optimize the participation of people with dementia in the analysis, each informing the other. For example, in the workshops people described their understanding of data extracts in metaphorical language, which the academic researchers then searched for patterns in the volume of data. There remained a high level of control over the analytical process by the academic researchers though the final outcome could not have been achieved by the academic researchers alone as it lacked the sensitivity and insights that those with dementia brought to the process. Data analysis is a process of turning “voluminous data . . . into understandable and insightful analysis” (Liamputtong 2020, p. 251). Managing the volume of raw data and the conceptual and analytic skills of analysis are mostly presumed to be beyond the capacity of people with a diagnosis of dementia. It is a stage of research in which academic researchers retain the strongest presence and as a result their voice dominates. The challenge posed by Nierse et al. (2012) to move from responsive methodologies to participatory methodologies at the point of data analysis remains one of the largest research challenges in this field. Ultimately, achieving this requires academic researchers to stand aside, to allow a presumed position as analytical experts, and exclusive arbiters of that expertise (Gillard et al. 2012) to be usurped. Questions for Reflection: • Have we discussed ways in which we can work in participation, as co-analysts, with people with dementia – who may or may not be the same people who were involved in data collection? • Can we use arts-based methods during analysis to enable participants to contribute to analysis without overwhelming people with large quantities of raw data? • Which stages of data analysis are able to make the most of the abilities of people with dementia, and how as academic researchers can we co-analyze to enable people to give of their best?

4.2

Acknowledging Contributions

As researchers, our primary outputs are academic presentations and publications. These outputs are valued by academia and provide ways to disseminate research findings. While these outputs may be extremely important to researchers, community members, including people with dementia, may not be involved in these “academic” processes (Austin 2015). Ensuring that people with dementia are not only involved in shaping these “knowledge products” but are listed as authors is an important way to not only give people with dementia a voice and profile, but to ensure that contributions are acknowledged and that the traditional power of academia is disrupted. There are numerous examples of manuscripts where people with dementia have been coauthors on this work (cf., O’Connor et al. 2018; Wiersma

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et al. 2016, 2019) as well as books (cf. Everyday Citizenship and People with Dementia, edited by Nedlund, Bartlett, & Clarke 2019). Disseminating research together is a critical part of ensuring “voice” and of disrupting traditional power relationships (Austin 2015).

4.3

People with Advanced Dementia and Participation

Because of issues related to our ways of obtaining informed consent and data collection (i.e., based on cognitive competence and verbal discussion), people with more advanced dementia are often excluded from research, particularly participatory types of research. Sherratt et al. (2007) explored ethical issues of involving people with advancing dementia in social research. In particular, they recommend being sensitive to the day-to-day fluctuations of people’s abilities. In addition, they suggest that simplified information and consent forms can assist with matching capacity with the complexity of the research. They also suggest that qualitative research may provide more opportunities for people with more advanced dementia to be able to participate. The use of creative methods of research, both data collection and analysis, can provide accessible ways for people with advanced dementia to participate in research. A variety of research studies have utilized these methods. For example, Kontos (2005) used ethnographic approaches to explore the embodied self for people with advanced dementia and Buse and Twigg (2014; Twigg and Buse 2013) also used ethnographic methods to explore material culture in a long-term care home through their project “Dementia and Dress.” Miller et al. (2015) used poetry to capture the experiences of people with advanced dementia in long-term care homes. Basting (2020) has used drama and theater, as well as creating the TimeSlips Project focusing on creativity as a tool for meaningful engagement of people living with advanced dementia.

5

Conclusion: Research Is a Relational Endeavor

I think like any relationship that you have, there’s a mutually agreed-upon set of ways that you speak to each other and there are certain boundaries that you have with each other; and that’s any relationship. And there are certain expectations of the relationship. There are certain goals with a relationship. There’s different types of relationships. And I think that’s just normal relationship building and we’re no different if we have dementia. It goes back to those words that were spoken earlier which is respect. I think it’s just getting to the simplest of what does a good relationship look like? It doesn’t matter if we have dementia and that’s what we should have in any relationship, no matter who it’s with. . . Person living with dementia, Inclusion Study by Wiersma.

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Underscoring the points that are made above related to inclusive research practices with people with dementia is the primacy of relationships. Without positive, safe, and trusting relationships, research practices will not challenge power, authority, and voice in ensuring the inclusion of people with dementia. Research, particularly qualitative research, is a relational endeavor, whether those relationships last for a short time or for a longer time. Positive and trusting relationships are fundamental to engaging people living with dementia, particularly in the coresearch process. Numerous researchers have elaborated on the importance of these relationships (Tanner 2012). Austin (2015) wrote about the ethical issues that emerge in participatory research, and the importance of relationships. Using a relational ethics framework, she proposes that understanding power differentials and who has “voice” is critical for participatory research. Relationships can also impact informed consent and process consent, particularly as participants trust researchers (Austin 2015). Even when people are involved as research participants, building relationships even in one-time interviews is important (McKillop and Wilkinson 2004). Austin (2015) suggests that relational engagement is critical for participatory research, and we suggest that all kinds of qualitative research require attention to relationships. Developing trust among people, mutual respect, and vulnerability are critical relational elements (Austin 2015). Without positive and safe relationships, we will not fully understand issues related to power, authority, and voice. Each of the sections and recommendations we have made above are best when embedded within relationships. We challenge researchers to think beyond traditional one-time data collection methods and to consider how to engage people living with dementia ongoing in research, whether in setting research priorities and agendas, engaging as coresearchers, or engaging as participants. Inclusion ultimately is fostered within trusting and respectful relationships, and if we as researchers wish to engage in inclusive and participatory research practices, we need to engage in positive relationships with people with dementia. As the landscape in dementia support and the research landscape shifts, this imperative is becoming even stronger. Achieving this requires us to embrace research approaches that equalize power, authority, and voice. Participatory methods invite us to suspend any search for a singular knowledge and to focus attention on multiple voicing in which we reject the integration of multiple voices into a single conclusion. For future research involving individuals living with dementia, the advice given by Bill Heibein below is valuable:

What advice would you give to researchers on involving and engaging people living with dementia? (Bill Heibein) If you’re doing any type of research on dementia or anything related to it, be sure you’re including and listening to people who are living with it. So much of what is done is based on medical aspects, what they think we need and what they think we should have, as opposed to what we know we should have to keep going. I’ve had very positive experiences participating in research. It works well and I’m happy to be involved.

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Acknowledgments We wish to thank all of the people with dementia and researchers with whom we have had the privilege to work over the years. We acknowledge that we have learned much from these individuals over the years. Elaine Wiersma wishes to thank, in particular, Sherry Dupuis, Brenda Hounam, and Lisa Loiselle for their significant influence.

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Sex Work Research, Racial Capitalism, and the Knowledge Industrial Complex Nada DeCat and Zahra Stardust

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Conversation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Research on sex work has historically been characterized by racialized and binary narratives of either trafficking victims (representing the colonial racialization of women) or empowered sex workers (representing the autonomy of white women). Calls for the decriminalization of sex work play a central role in sex worker law reform projects but can be contrary to revolutionary or anticolonial agendas – in some cases even expressly excluding migrant workers. In this interview, Nada DeCat shares her personal experiences as an Asian sex worker, student, artist, undocumented migrant, research subject, and burgeoning philosopher. DeCat argues that the racial contract is inherent in sex worker research and regulation, manifesting through the use of migrant sex workers for racial capitalism, including for institutional profit, diversity and inclusion signaling, and in the funding of white researchers to make knowledge about racialized people, predominantly for white audiences and institutions. Where they negotiate with the neoliberal state and the corporate academy, the increasingly NGO structures of sex worker organizations can in effect work to prevent radical theory and action. N. DeCat School of Politics and Philosophy, Deakin University, Melbourne, VIC, Australia Z. Stardust (*) Centre for Automated Decision Making and Society, Queensland University of Technology, Brisbane, Queensland, Australia Berkman Klein Centre for Internet and Society, Harvard University, Cambridge, MA, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_28

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As a result, DeCat argues that both sex worker research and organizing can perpetuate epistemicide and prevent opportunities for racialized migrant sex workers to organize. Drawing from critical philosophies of race, DeCat proposes a politics of negativity, refusal, and disengagement to navigate this, suggesting that we should instead be researching academic institutions and researchers themselves. This interview offers a counternarrative and counterhistory to the dominant view of sex worker activism and research and proposes new frameworks for engaging and relating. Keywords

Research · Sex work · Racial capitalism · Negativity · Radical theory · Counterhistory

1

Introduction

Why argue against inclusion in a handbook on socially inclusive research? On a topic with a history as vexed as sex work, would not it be responsible to work alongside researchers to improve their approach? When invited to contribute a chapter to this collection, it would have been straightforward to lay out the generative work being done to bridge the gap between researchers and sex workers. The partnerships being forged, the ethical guidelines being developed, and the methodologies being established – all the work that is currently being undertaken to make research on sex work supposedly “better.” But we are not interested in producing a Sex Work 101 Guide for researchers. We are not interested in facilitating access for researchers to our communities, being used as social capital, or having our knowledge and expertise constrained to a position as glorified data collectors. We are not here for diversity signaling or profiteering. Because research is not simply about inclusion; it is about power. We must interrupt – who is asking the questions, who owns the data, and how the institution of research itself operates as a neoliberal knowledge-industrial complex to produce knowledge about marginalized people. In this chapter, we wanted to talk through some of the territory where research goes wrong. The prompt for this piece was an international research project about migrant sex work, conducted in Asian brothels and massage parlors on Gadigal Land in so-called Sydney, Australia, which was subject to serious criticism from migrant sex workers and sparked community discussions about racism and white supremacy both in research and in sex worker organizing. We are both sex workers and yet have different experiences of the state, the academy, and of organizing. Nada, an Asian migrant sex worker who has lived much of her life undocumented, shares her experiences and thoughts as an independent artist, university student, and research subject. Zahra, a white settler and queer femme, speaks from her experience working in law reform, policy, and research for both sex worker organizations and academic institutions. Because sex worker

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peer research is so dominated by whiteness, we present our thoughts as an interview that foregrounds Nada’s experience and analysis. We created the questions and structure collaboratively, driven by Nada’s previous writing and the direction of her current academic thinking. As a result, this chapter weaves through the personal and the political. It explores how being undocumented impacts one’s understanding of the state; how Asian sex workers have been characterized by binary narratives as either trafficking victims or empowered sex workers; how calls for decriminalization can form part of a law reform project that is contrary to revolutionary or anticolonial agendas (in some cases, even expressly excluding migrant workers); how migrant sex workers are used for racial capitalism and institutional profit by white researchers producing knowledge for white audiences; how this erasure of knowledge perpetuates racialized epistemicide; and how the increasingly NGO structures of sex worker organizations can in effect work to prevent radical theory and action. The assumption is often that sex workers want to be included in research. But, as Nada says, we should have more self-respect! This interview offers a counternarrative and counterhistory that see the racial contract as inherent in sex worker research and regulation. It suggests that instead of looking down and fixating over how to “represent” marginalized communities, we ought to be researching up: interrogating institutions, researchers, whiteness, neoliberalism, settler colonialism, and the state itself.

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The Conversation

Zahra Stardust (ZS): Sex workers are a marginalized community who are often socially excluded from equitable participation in public life. Research institutions – especially health and social sciences departments – have been eager to consult and engage with sex workers. Drawing from fields of feminist research ethics, participatory action research, and socially applied research, some researchers are seeking to engage with sex workers in ways that create meaningful partnerships, coproduce knowledge, and result in material benefits for communities. And yet, the experiences of people who have engaged in such projects as research subjects are often overlooked. The context in which research is being generated – the uneven distribution of research funds, the inequitable division of labor, the publishing practices, the attribution of copyright, and the impetus for fast and high-impact production – is often eclipsed. Diversity and social inclusion are now part of university metrics, marketing, and branding but too often operate as empty buzzwords for co-opting marginalized people into institutional systems. This context undoubtedly shapes what kind of research is undertaken, how it is conducted, and who owns it. It also compels researchers to consider the emotional impact upon minority groups who do this kind of “diversity work” where they are used as a “tick in a box” to obscure racism and institutional whiteness (Ahmed 2017, p. 126).

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Nada, you are an activist, sex worker, philosophy student, and practicing artist. You have also been an undocumented migrant for much of your life and have participated as a research subject on Australian and international projects relating to migrant sex work. Much of your writing draws upon this positionality – you write about racism in the academy, the sidelining of migrants in sex work organizing, and problems of representation in art. These experiences afford you a unique standpoint and distinct worldview from which to understand and evaluate the political contexts in which research occurs. How have your life experiences impacted your approach to both activism and research? Nada DeCat (NDC): My experiences have taught me that research operates as a practice within colonial institutions to perpetuate western racial capitalism. I reject the dominant view of research as being inherently benign. Throughout my childhood and adult life, I experienced the harm of border imperialism, criminalization, and exploitation and came to be untrusting of the state and all its apparatuses – especially research. As a teen, I was abandoned by my parents and became an “illegal alien” in the eyes of the nation state. This made me both antisocial and independent (despite this, I do not subscribe to Libertarian and individualist theories). It gave me the skills to be critical and capable of spotting and imagining the worst aspect of others and institutions. Unfortunately, this also means that my humor largely goes untranslated. In later years, I began sex work underage in order to support myself. This was after learning that my full scholarship to a university was denied due to my being undocumented. This was before the USA introduced the Deferred Action for Childhood Arrivals (DACA) policy, which permits some undocumented children to avoid deportation and obtain work permits. In addition, I became an acrobat and was once hired by Cirque du Soleil. Unfortunately, the offer was rescinded when they discovered my undocumented status. I eventually left the USA and traveled the world. Eventually, I became an international student in Australia. Sex work helped fund my exorbitant international fees for many years. In total, I have 20+ years of various sex work experience. However, I have also engaged in many other types of work such as doing front-end web development and being a bike messenger in San Francisco. I owned a crime scene cleaning business at one point. I am not a current sex worker; however, this is not to say that I will not engage in sex work in the future, especially given the lack of opportunities for racialized people in academia. Recently, I finally and reluctantly became a citizen of so-called Australia. Currently, I live in Gumbaynggirr land, Northern New South Wales (NSW). I have returned to university to study politics and philosophy in order to complete a PhD in Political Philosophy. ZS: Scholars of color have critiqued western approaches to research and describe their devastating effects upon marginalized communities. Aboriginal women have interrogated the domination of white feminist scholarship in obscuring Indigenous worldviews (Moreton-Robinson 2000; Behrendt 1993), and Māori scholars have critiqued colonialism in teaching and research methods (Tuhiwai-Smith 2012).

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In sex work research, migrant sex workers have historically been represented as passive victims in need of rescue (Agustín 2007). This narrative has been used to justify patronizing policies and harmful policing practices that control the autonomy and movement of migrant workers. Racialized depictions of Asian sex workers in particular can be traced back to the formation of the British empire in the policing of ports and venereal disease (Levine 2003). These continue today in narratives on trafficking and immigration, although more recent research seeks to represent migrant sex workers as agentic, autonomous decision-makers negatively impacted by restrictive border policies (Renshaw et al. 2015). From your position as an Asian migrant sex worker, can you describe how our current context impacts on the ways in which migrant sex workers are positioned (and used) in research? NDC: The aesthetic of Asian migrant sex workers has largely remained the same since the beginning of colonialism. The patronizing colonial narrative that westerners must rescue Asian women through forced medical examinations, deportations, and raids was present in the earliest legislation governing sex work and remains to this day in campaigns to “save” migrant sex workers from trafficking. The control of migrant Asian women by formulating our identity and image is fundamental to our racialization. Existing western approaches to research have difficulty in creating new paradigms to subvert this dominant view that do not objectify racialized migrant sex workers even further. For instance, researchers often represent Asian migrant sex workers as being trafficking victims or otherwise incapable of autonomy (Kempadoo 2001, p. 32). By contrast, the more contemporary, liberal articulation seeks to oppose this image, by fitting migrant sex workers into neoliberal and third-wave feminist narratives of autonomy and empowerment. This is done by representing migrant sex workers as workers, just like the rest of the sex worker communities. Both these binary approaches fail to understand that representation itself is the problem in the context of academic research. In both these instances, the representation of migrant sex workers conforms to normalized narratives about racialized women. This is to say that we are either victims or just the same as our white counterpart. This results in racialized migrants being represented largely by white academics as subjects of research, even within sex worker peer research. The subjects of these studies are often sourced through nongovernment organizations (NGOs). For instance, anti-sex work NGOs might find subjects who identify as “sex trade survivors” or claim to speak for trafficking victims (Musto 2008, p. 15). Likewise, in my personal observance, pro-sex work organizations source their subjects, like myself, from their respective networks of community-engaged sex workers. Either way, representation is impossible and the representation is inevitably incomplete. This is because one does not have a singular representational identity as a migrant sex worker. Our representation (and identity) is formed temporarily and only for the purposes and agendas of NGOs and researchers. In some cases, this agenda may be to generate data that can fight draconian laws. Yet, the terms and decisions about the research and policy are rarely, if ever, controlled by migrant sex workers ourselves.

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In the end, marginalized communities are re-represented by those that have institutional power as representatives (Spivak 1988, p. 69). Such representatives are often from a higher class and end up asserting their own personal agenda or being invested in their own organizational self-existence, therefore failing to serve the community they are studying (Spivak 1988, p. 71). In research, perhaps especially socially engaged or socially applied research, marginalized subjects might be influenced by the ideology of the institution or researchers. A researcher might mistake the desires of a marginalized individual as being the same as collective desires of the community, thus creating a monolithic misrepresentation. For us, a fast way to gain social capital in the current political environment, characterized by third-wave liberal feminism, is to show how we are just like our white counterpart, and speak against the anti-trafficking industry by emphasizing our autonomy and empowerment. But attempts to show how sex work is distinct from human trafficking may not actually address the need for settler-nation state’s border police to articulate its white identity, especially in relation to international trade. Similarly, promoting models that criminalize migrant sex workers, valorized as being decriminalization, clearly does not benefit migrant communities (DeCat 2019). This dichotomy does not challenge normalized settler-colonial narratives. Research industries, which contribute to and engage with both sex work abolitionism and the liberal sex worker movement, sustain nationalist narratives that create borders to perpetuate western racial capitalism. For instance, let us take the first option that racialized migrant sex workers are viewed as just like white sex workers. This means that we are unable to contribute different viewpoints from our experiences. We must rally for decriminalization and align with white sex workers without being critical of how the sex workers’ movement contends with issues of race. This means being assimilated into the white sex workers’ movement. The opposing narrative is that we are the racial “other.” We are seen as Asian “victims” that play into racialized stereotypes of being submissive and passive and abused by “savage” Asian, Arab, or Black men. The latter narrative imagines the non-west as particularly suffering from patriarchy and human rights violations without addressing the violence of colonialism. Approaching sex workers solely through a class analysis again fails to address race. This is despite race, especially antiblackness, being at the foundation of class formation (Robinson 1983 p. 2) and fundamental to capitalism. Robinson (1983, p. 2) popularizes the term “racial capitalism” to describe how capitalism was formed out of racism in feudal Europe, which formed the ordering of labor on racial lines. For instance, what was seen as “working class” by Marxists was already divided into previously racialized classes such as being Irish. Racial capitalism reflects the fact that the economic system is not simply economic class dependent as suggested by Marx, but primarily divided by race (Robinson 1983, p. 2). In sex work research in settler-colonies like Australia, racial capitalism functions to form dominant white identities and create a racial hierarchy within the class of sex work itself.

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ZS: What does this mean then for the production of knowledge about sex work? NDC: Knowledge production is an industry. Research should be seen as big business that both influences and is influenced by politics. In a historical context, research serves as the state’s soft cultural control to align the population for white supremacist and capitalist western indoctrination. This claim may seem extreme due to the continuous erasure of racialized peoples’ histories that are perpetuated by the knowledge industrial complex. To understand this, we must first remember that current museums and exhibitions were founded to display the superiority of the West during colonialism in the 1800s (Bennett 1988). Museums displayed rooted cultural material of colonized peoples and furthered the ideals of western global domination. British exhibitions such as the Crystal Palace at the Great Exhibition in 1851 were emulated similarly in Sydney, Australia, as the Garden Palace. As Bennett describes, these exhibitions educated the public in hierarchical order, technological superiority, valorization of industrialization, and classifications of subjects and objects on display as envisioned by the West, placing white citizens as the beneficiaries of power (Bennett 1988, pp. 79–80). The display of body parts and artifacts of racialized people as part of native flora and fauna (Aldrich 2009) came hand in hand with educational and research industries’ engagement in eugenics and teleological political theories of liberal progress. Today, many settler colonial societies are finally confronting the racist statues which were erected to repress accurate histories and to promote mythical histories about the West and white identity. We can see this in the calls to remove the Confederate and Columbus statues in the USA, the Rhodes statue in South Africa, and the Cook statue in Australia. This should also cause us to stop and question how knowledge has been included and excluded in academic institutions, including through practices of epistemicide, erasure, and whitewashing. Throughout the Cold War, cultural institutions developed more sophisticated methods of masking their functions. Rockhill (2014, p. 201) argues that individualism was valorized by the abstract expressionists, and artists were funded to represent this movement at the expense of social realism. Today, as Message (2007, p. 239) notes, cultural institutions such as universities display diversity and inclusion as being synonymous and equal to concrete sociopolitical and economic justice. But colonialism did not end. In our current ongoing settler-colonialism, it is not surprising that research industries continue to reproduce similar racialized dynamics. The institutions are mainly headed by and valorize knowledge produced by white individuals. No matter how participatory the project, research institutions are not geared toward generating collective knowledge. They are focused upon generating profits. The minority of racialized people who work in this space, including me even as a student, effectively help – and maintain – the institutions by providing a display of liberal progress. This is reflected in the current explosion of policies and marketing that promote inclusion and diversity. The late law professor Derrick Bell (Delgado and Stefancic 2005, p. 86) argued that liberal reforms such as affirmative action in the USA actually failed the majority of Black people while confirming white peoples’ belief in positive progress. These efforts toward tokenistic inclusion often work to create a divide between the few that

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can function in the white space and the remainder of the racialized people who continue to be marginalized as mere subjects or objects of knowledge production. Similarly, Linda Tuhiwai-Smith (2012, p. 207) has pointed out the problems of research on Indigenous populations when cultural knowledge is effectively bought from individuals and owned by researchers. The acquisition of knowledge by institutions counters the fight for land rights and sovereignty of the First Nations’ peoples. Colonial practices remain in research on migrant sex work in unethical research design, inequitable funding distribution, and the failure to create projects that are grounded in and controlled by migrant sex worker communities. ZS: Sex worker organizations around the world are campaigning for decriminalization, lobbying governments, and engaging with researchers to remove criminal and licensing laws that hinder sex worker access to justice. Many countries retain colonial laws that criminalize solicitation, procurement, brothel-keeping, living off the earnings of prostitution, working with a sexually transmissible infection, and similar offences. Police use sex workers’ own strategies for safety and survival (carrying condoms or sexual health equipment, working together with other sex workers, and taking time to screen clients) as evidence of their crimes. There is mounting research now indicating that policing practices actually create further risk for sex workers, who change their work practices to avoid arrest. Decriminalization is a policy shared by many sex worker organizations around the world, one that seeks to ameliorate the effects of policing and incarceration. And yet you have been more skeptical about whether decriminalization should be the primary unifying point for sex worker activism. Why is that? NDC: Decriminalization does not directly address issues that many migrant sex workers might have. While it may result in reduced police contact for some sex workers, it will not bring sufficient changes for racialized people around the world. For instance, full decriminalization does not eliminate the racial contract, which is inherent in settler law and policy. Black sex workers will undoubtedly still face the worst of unequal law practices. Migrant sex workers are still targeted for police raids, even when sex work is decriminalized, because of discriminatory immigration policies or racial stereotypes of saviorism (DeCat 2019). If we think about decriminalization as defined by Australia’s national peer sex worker organization Scarlet Alliance as the removal of criminal and licensing laws that regulate sex workers and sex service premises, then we can understand decriminalization as a step toward “negative rights.” Negative rights, such as freedom of speech and freedom to acquire property, are the rights of individuals to be free from government coercion and interference in a liberal democracy. By comparison, “positive rights,” such as the rights to education and health care, obligate the state to act. One might think of decriminalization in a positive sense as a right for sex workers to engage in sex work. However, decriminalization is concerned with the removal of criminal laws and prevention of prohibitive laws rather than instilling any right to work. It does not positively obligate the state to do anything for sex workers. While it may be tempting to argue for a right for sex workers to engage in work, this model of “legalization” or “licensing” often comes with particular laws which prescribe how and where sex workers ought to engage in sex work. Licensing

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models are largely opposed by peer sex worker organizations because they inevitably create a hierarchy of sex workers between those who can afford to comply with onerous restrictions and those who cannot. Often, this leaves out the most vulnerable who continue to be criminalized. For instance, a law might mandate sex workers to register with the state, like in Victoria, Australia. This is problematic when migrants’ home countries might have severe penalties for engaging in sex work and the state records might link to immigration records. Even if the state can ensure information security, the fear of information breach might encourage migrants to not register, leaving them vulnerable to policing. Despite decriminalization being the best model to advocate, it still conforms to liberal reformism. Sex work organizing relies largely on the concept of individual rights, which were founded during the Enlightenment (Makau 2002, p. 13). However, as Mills explains, these rights and freedoms were only reserved for white men. Racialized people were governed by a “racial contract,” which comprised a restriction of rights (1997, p. 16). Exclusion from human rights was carried out by classifying non-white peoples as “subhuman” (Mills, p. 16). As human rights instruments emerged post World War II and into the Cold War, they were developed as liberal compromises that effectively worked to quell movements of black radicals, communist thinking, and calls for reparation for colonization. Decriminalization of sex work, then, is a continuation of this western colonial system of racial capitalist governance, rather than a radical stance against these processes or ideas. The liberal fallacy is that things are getting progressively better for racial minorities, and we only need to keep reforming the system so that the original position of western Enlightenment about freedom and liberty has less contradictions. This is untenable. The idea of teleological progress itself was used as a justification of colonialism (Mills 1997, p. 49). At best, decriminalization will reduce some, most likely white sex workers and “elite” Asian “escorts” (myself included), contact with police and will increase their access to rights and services. At worst, decriminalization remains complicit in a libertarian agenda that is limited to protecting the rights of mostly white individuals to engage in what libertarians see as a free market. ZS: Are there other issues that you would prefer to see at the forefront of the sex worker rights movement, issues like housing, healthcare, open borders, prison abolition, decolonization, or land rights – issues that have capacity to impact more than simply sex workers? Or is it about de-centering law reform more generally in sex worker sociopolitical movements in favor of more structural and long-term change? NDC: Overturning systems of racial capitalism requires decolonization, or anticolonial revolution that counters racial capitalism. This is contrary to mere reforms such as decriminalization. There are no incremental steps toward a revolution, especially via the same mechanisms and institutions one desires to oppose. This is not about pleading with the very institutions that abuse us to not be abusive. We ought to develop a stronger sense of self-respect. I am guided by the work of Frantz Fanon (1966, p. 30) in this sense, for whom decolonization is a complete reordering of the world which replaces people at the top

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with people on the bottom. According to Fanon, this requires violence, especially in settler-colonial societies, where the settlers are replaced by the colonized for repossession of land. If sex worker organizations and researchers genuinely want to improve the lives of racialized sex workers, they must advocate for more than removing criminal laws – they must address racial capitalism and the racial contract. This might lead to conclude that prison abolition is preferable. Yet, there is always the risk that moves toward prison abolition or decolonization may simply be absorbed into reformism and fail. Some attempts to bring about prison abolition in Australia, for example, have resulted in worse policies for Aboriginal people in prison because they have become diluted into the superficial reform of existing penal structures (Baldry et al. 2015, p. 169). Even if prison abolition is successful, it does not eliminate the racial contract inherent in the nation state, nor does it reinstate Aboriginal sovereignty. This means that prison abolition is still reformist – it is not the same as the step toward elimination of the state. Further, there is a danger that defunding the police and prison abolition can create a situation where NGOs and social services, led by white people, become the police of racialized people for the capitalist state. Decolonization is necessary, not solely in so-called Australia but globally, in order to end systems of racial capitalism. It is unlikely that most colonized people and their supporters will resort to violence against their neighbors and institutions to repossess their land. And yet Fanon (1966, p. 32) believes that only violence brings about decolonization because conciliation is not possible. This poses barriers for how we achieve decolonization in our current settler-colonial state. To mitigate this issue, there have been a few problematic attempts to sanitize Fanon and his ideas to fit decolonization into the existing systems, by adopting the concept of decolonization, as Tuck and Yang (2012) describe it, as “a metaphor.” Researchers and universities want to claim that they are decolonizing their curriculums or their research agendas. But by only addressing psychological decolonization and avoiding the violence Fanon argues is necessary, this metaphorical decolonization fails to contend with the central issue – the repatriation of land. Decolonization in practice is likely to mean worsened living conditions for settlers, through the giving up of land, culture, and power, and perhaps even death. The failure of settler institutions to face this uncomfortable fact means that many institutions and researchers simply appropriate decolonization to suit their own agendas. As Tuck and Yang (2012, pp. 14–16) argue, the absorption of decolonization results in alleviating settler’s guilt in numerous ways, by settlers adopting Indigenous knowledge, creating a false sense of mutuality, losing settler identity, and operating as an equivalent form of colonialism itself. ZS: Part of the problem then is our delusional faith in a myth of progress when we engage in research, policy, or law reform efforts, which act as a distraction from underlying and ongoing circumstances of racism and colonization. What would be a better way to engage? NDC: To confront the lack of decolonization and, therefore, the permanence of the racial contract in reforms of the existing system, Derrick Bell (Delgado and Stefancic 2005, p. 83) offers the theory of “racial realism.” He gives insight into how we might better persevere despite his grim prognosis that racism is here to stay. The

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failure of reforms is extensively theorized by Bell. He recounts civil rights reform in the USA and its failure to benefit the black community (p. 86). He examines the racism inherent in law and policy as, from the inception of the USA, compromises to Black rights were fundamental in creating the wealth necessary for the nation, and therefore the constitution, to exist (Delgado and Stefancic 2005, pp. 28–29). Some reforms also help divide the community by including a small group of Black people into the middle class or leadership positions while the majority remain in poverty (Bell 2008, p. 210). This also confirms the white people’s perception that there is natural positive progress and equality, while failing to benefit racialized people the reforms intended to help (p. 86). Some critics of racial realism claim that lack of hope in reformism will result in apathy (Abrams 1992, p. 518). However, the problem is that this myth of progress results in complacency about racialization and colonialism (Delgado 1992, p. 529). After civil rights reforms, many people of color resort to self-blame because systematic racism still exists. By comparison, taking a lens of racial realism can lead to action against the hegemony by probing for more accurate histories and understanding how racism functions. To find solutions to racism, we must have a correct diagnosis of the problems (Delgado 1992, p. 531). We must lose our false hope in reformism, and persevere for a better alternative, despite the diagnosis being more painful and the conclusions being significantly more difficult. My concern is that the bulk of sex work research and activism – where it focuses on incorporating migrant sex workers in an attempt to achieve “diverse representation” or where it negotiates with the state for piecemeal law reform – does not accurately diagnose the problems facing migrant sex workers. While sex worker organizations are hierarchically organized to resemble NGOs, while academic institutions operate as for-profit corporate bureaucracies, and while white, middle-upper class individuals are in leadership positions, the majority of research and advocacy will inevitably lead to reformism rather than radical action. If we took an approach guided by “racial realism,” however, we could better articulate the root problems (racial capitalism, racial contract, and settler colonialism) and design strategies, projects, or research that seek to reduce the harms as much as possible. In research, it might be more useful for researchers to explore the state and its systems themselves. But also, we need to think about anticolonial and anticapitalist revolution outside our national border and address international capitalist addressed. Anticolonial resistance must be a global strategy with flow on effects for how we organize borders, states, police, and resources. ZS: Speaking of borders, we are currently seeing an acceleration of the criminal legal approach to trafficking and border control. The policing of migrant sex workers has taken the form of a “militarised humanitarianism and carceral feminism” (Bernstein 2010), informed by antimigration agendas (Andrijasevic 2010). Sometimes, law reform campaigns refer to the regulatory model in Aotearoa as a form of “decriminalization” that could be followed by other jurisdictions. However, that model continues to prohibit sex work for migrant sex workers, including anyone on a temporary visa. You have spoken out against the “New Zealand Model” as a manifestation of racism and white supremacy, as it creates barriers for migrant sex workers to access

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work health and safety mechanisms for fear of deportation or arrest. From your position, in what ways does this model reproduce the racial contract? NDC: Researchers love to cite the New Zealand model as an example of “decriminalization” of sex work. New Zealand introduced sweeping reforms to their sex work laws in 2003, and now researchers and governments are looking to this model as guidance for their own law reform projects. But the New Zealand model is not decriminalization for migrant sex workers. The reforms are only applied to New Zealand citizens and residents. Section 19 of the Prostitution Reform Act 2003 specifically says that anyone on a temporary entry class visa engaging in sex work (such as people on student visas or visitor visas) is liable to deportation. Immigration New Zealand (IMZ) is proactive in sending border police into brothels to identify and deport migrant sex workers (New Zealand Immigration 2020). The New Zealand model is an example of the racial contract in action, because the protections available to citizens are unavailable to temporary migrant sex workers, the majority of whom are Asian (Armstrong 2020a, p. 115). Some argue that this model still constitutes decriminalization, because the prohibition of sex work for temporary migrants is found in immigration law rather than criminal law. Migrant sex workers may not be explicitly criminalized (it is not a criminal offence to sex work on a temporary visa), but the consequences of sex work are effectively tantamount to (or sometimes worse than) criminalization because they involve detention and deportation. Migrant sex workers in New Zealand essentially face what I call “criminalization by proxy.” Immigration detention centers and their officers are arguably equally as oppressive, if not more than, the criminal legal system. Protections afforded to people incarcerated within the criminal legal system do not always apply to people indefinitely detained in immigration detention. In part, the problem is that we have become caught up in technical distinctions framed within the lexicon of western criminal laws. Instead, we need to understand decriminalization as a process that repeals all prohibitions on sex work. This means not only criminal laws, licensing laws, and registration systems but also immigration laws. Decriminalization differs from “legalization” or “licensing” models that still maintain legislative controls on who can work and where. This is not controversial. In fact, this distinction between decriminalization and licensing is accepted by many sex worker organizations. Some already recognize that the New Zealand model is licensing because they place conditions on advertising, mandate condom use, and require certificates for brothel operators (with offences and fines for noncompliance). It is therefore contradictory to the claim that a law that provides for the deportation of temporary migrant sex workers can constitute decriminalization, because it is part of a framework that still determines who can sex work. To claim that the New Zealand model constitutes decriminalization is to say that Asian migrant sex workers are not “beings who count.” It is to say that migrants do not count enough to change the status of decriminalization, and that they are outside of and do not deserve equal protection under the law. This prohibition on migrant sex work, regardless of a person’s working rights (noting that other kinds of work are permitted on temporary visas), means that the New Zealand model is more accurately described as “legalization.” As migrant sex workers, we already know this.

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And so, when researchers continue to cite this model in advocacy and publications as “decriminalization,” it constitutes what De Sousa Santos (2014, p. 92) calls epistemicide. This is when murder is committed against the knowledge of racialized peoples (De Sousa Santos 2014). Calling this decriminalization – as if migrant sex workers do not matter – erases the knowledge and experience of migrant sex workers. Additionally, the exclusion directly functions to implicitly racialize Asian sex workers (and thus, Asian women) as a lesser being. This racialization helps explain incidents such as when a Filipino-Australian woman was detained and deported from Australia because she was believed to be an illegal migrant and a “sex slave” (The Sydney Morning Herald 2005). ZS: Why then, in your view, does this model continue to be referred to as decriminalization? NDC: I think the valorization of the New Zealand model stems partly from the NGO-ification of activism. Even when well intentioned, the institutional structure incentivizes negotiation with the state and creates a class of sex workers who take up activism space and speak on behalf of other sex workers. This means that grass roots activism is professionalized (Choudry and Kapoor 2013, p.1) and advocates begin to look for shorthand references to compel governments to make political change. The New Zealand model becomes an easy example to offer to politicians as evidence of success (for citizen sex workers only). This has led to the oversimplification and misrepresentation of a highly contested model and the erasure of migrant sex workers’ voices. This is perpetuated by the need for white sex workers to resist the inevitable creep of problematic laws and policies around the world that are primary concerns of white sex workers. The Swedish model, which criminalizes clients of sex workers (Levy and Jakobsson 2014), has now been adapted in France, Canada, and Ireland. The Fight Online Sex Trafficking Act/Stop Enabling Sex Traffickers Act in the USA continues to make sex workers’ lives difficult by requiring websites hosted in the USA to remove content that facilitates or promotes prostitution (Tripp 2019). These issues might also concern migrants. Yet, primary concerns of migrants might differ significantly. As migrants, we are not even given a space to theorize or articulate our own issues. Rather, we are assimilated into parroting the concerns of white sex workers. Spruiking the NZ model mobilizes white sex workers (presumed to be synonymous with all sex workers) against the advent of criminal laws. In doing so it presents decriminalization as a viable alternative for governments. For this reason, we should see the promotion of the New Zealand model as “decriminalization” as a worldwide media campaign. This campaign involves one-directional communication from the New Zealand Prostitutes Collective (NZPC) and their affiliated research partners to the global sex worker community and governments abroad. The messaging takes a few forms – first, a positive and informative message regarding the benefits of the NZ Model. For instance, a better ability for sex workers to report to police when experiencing violence (Armstrong 2017, p. 579; Crichton 2015). Second, a negative tone against anti-sex work organizations that counters their arguments and moral panic regarding sex work (Armstrong 2020b, p. 6). It does not seek to promote open dialogue but rather to control a centralized narrative about what the model is and who it serves.

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This one-way communication from researchers and NGOs to sex worker activists results in sex workers around the world mistaking the New Zealand model for decriminalization (NSWP 2019). In Australia, sex workers from peer NGOs have recommended the NZ Model during law reform (Select Committee on the Regulation of Brothels 2015, p. 21). Further, various state and territory governments have quoted the NZ Model in an attempt to introduce regulations, such as licensing and proxy criminalization of migrants, under the guise of decriminalization (Select Committee on the Regulation of Brothels 2015, p. 117; SWOP NT 2019, p. 10). Valorization of the NZ Model is especially dangerous when arguing against the antitrafficking industry. This could signal the government, globally, to push for criminalization of migrants. Migrant sex workers might assume that researchers ought to have seen a point of criticality in examining the NZ Model. Yet, what we find at the end and beginning of democratic knowledge production’s problems points to epistemicide. Epistemicide creates a condition for silent utilization of the racial contract. For instance, in the research of the NZ Model by Rottier (2018, p. 151), the concept of decriminalization remains uncontested even when citing migrant criminalization as contradictory. Sometimes, the fact that migrants are criminalized is omitted or eclipsed (Armstrong 2020a). This is not to suggest that the researchers are ill intentioned nor that they have not written extensively in support of migrants. There is evidence to believe that they are trying their best in being supportive of migrant sex workers. In the fight against harmful policies instigated by moral panic about sex work, researchers fail to be critical of their own epistemologies, creating a significant lack of theorization. The result is expressed succinctly by Tanya Cañas (2018, p. 270) of peer refugee organization, RISE: “Theorisation was no longer ours. It was not done by us, but was to be done to us.” Aside from definitional problems, on what basis do researchers qualify to extrapolate sex worker rights from the specific New Zealand context to the global? Is decriminalization a universalizable demand that will better the lives of all sex workers living under different governance structures and cultures? Human rights itself is a western-centric theory advocated as a universal value (De Sousa Santos, p.22). As a university student, I have been taught Kant’s theories as equating to “global ethics” under cosmopolitanism. And yet Kant, like many Enlightenment theorists, hides his secular foundation while instituting his nonsecularism as being synonymous with and the only way for a democracy. Most university studies fail to seriously contend with the issues of colonialism, race, and capitalism. Marginalized theories can be found only if students and academics research outside of the given dominant literature. For instance, Harfouch (2018, p. 155) argues that Kant solved the philosophical mind-body problem by categorizing racialized people as nonbeings and white people as a full human being. This was necessary to articulate how humanity exists due to reason of progress rather than requiring god as a reason behind a consciousness. This is to say that theories of global ethics and much of the justification of the UN and human rights are articulated directly from the inventor of modern categorization and systematization of race, in other words, one of the major founders of white

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supremacy. According to Mills (2014, p. 125) Kant’s theory on race was a large part of his well-organized philosophy which he lectured on much of his career. Often, we are not given the conceptual tools, such as the racial contract and Harfouch’s theory of Kant to question ideal values and their legal implementation. There remains a lack of theories and obfuscation of knowledge about how to question the racial contract. In contrast, the Sex Workers Outreach Program Northern Territory consulted me about the New Zealand Model after I published an article on the racism of decriminalization in the peer sex worker blog, Tits and Sass (DeCat 2019). SWOP NT now denounce the NZ Model. However, they are the only peer sex worker organization that I know of to name the model as licensing (SWOP NT 2019, p. 9). Further, the Northern Territory has also achieved full decriminalization of sex work, including the removal of registration and the destruction of certain’ criminal records. This happened in 2019 after 20 years of advocacy and without much media attention. This leads to my hypothesis that, perhaps, campaigns about marginalized communities are unnecessary and dangerous. When we create public media campaigns to gain global political traction and valorize one particular model, it promotes circular conversations, invites attacks by opposition, and in the end leads to a fixed and unrelenting position. ZS: You mentioned NGOism earlier. In any social movement, there are risks that advocacy takes precedence over activism, or that activism becomes absorbed into NGOism, or that communities are encouraged to participate via increasingly narrow, government-sanctioned pathways. Often, the focus on cooperation and reform leads us to be involved in government consultations or research advisory groups rather than intervening in systems through more decentralized and disruptive forms like direct action or supporting one another through mutual aid. In Australia, some sex worker organizations are in the unique position of receiving government health funding. This came about when sex workers mobilized to work in partnership with governments during the HIV crisis in the 1980s and governments saw the need to invest in communities. The funding is of course ad hoc and precarious, usually linked to specific, time-limited projects rather than core funding. Sex worker organizations are member organizations, and members began – and still to a large extent operate – in volunteer capacities. Many have strategies for how they maintain political autonomy from funders by diversifying funding, maintaining cultures of volunteerism, strategically using resources, capacity building, and peer education (Jeffreys 2018). But of course, accepting funding brings its own challenges where organizers can become caught in a nonprofit industrial complex that is unlikely to fund a revolution (INCITE! 2017). NDC: The structure of NGOs prevents radical action. This is because the NGOs necessitate negotiation and complicity with the state and its hierarchical organizational model. As Choudry and Kapoor (2013, p. 18) point out, this can stifle critical structural analysis and create a hegemony that aligns with liberal “democratic” states. Sex worker organizations in Australia take various forms. Some are locally organized volunteer collectives. Others are incorporated associations with paid staff, constitutions, and government funding. As community organizations, the larger organizations often have working parties, steering committees, and membership

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intended to direct the work. The risk is that these structures begin to resemble NGOs, whose main goals are law reform and political lobbying. Over time, NGOs usually seek to maintain their own funding, relevance, and existence at the expense of a more decentralized movement. NGOs cannot work against the government. Rather, the increasingly NGO structure of sex worker organizations tries to integrate sex workers into the existing system and creates careerism in activism. This inevitably will fail many racialized peoples who cannot or will not be assimilated. Many of these organizational structures – even though they have election processes – end up electing leadership comprised mainly of white and middle-class sex workers to make decisions about people of color and lower-class white people. Only a minority of sex worker organizations are led by people of color in settler-colonial and European nations. Yet, most still must organize with other sex worker organizations’ narratives to gain support and social capital for their existence. This structure reproduces the larger superstructure of our dominant system. Activists who might have more radical leanings are encouraged/incentivized to organize through this structure and are therefore undermined. This is not helped by the oversized attention given to white Marxist sex worker theorization in the small segment of radical space in sex worker organizing. This is Marxism which does not address racialized capitalism and is ultimately a liberal project dressed up as Marxism. To clarify, their reformist tactics of decriminalization of sex work often remain unchanged and do not lead to revolution or an end to racial capitalism. Instead, it conflates reformism with revolutionary tactics. The presence of Marxist sex worker politics is also an example of failure to address race, therefore, capitalist class. Simply seeing sex workers as workers does not address the established racial hierarchy that capitalism depends on. This was not said in support of the capitalist and liberal idea of diversity and inclusion. Despite this, racial realism highlights the necessity to persevere. Instead, we need to refrain from making concessions that cause decriminalization to lose meaning or in which result in trickle down rights, and instead push for more radical options whenever possible. When considering our past histories and theorizing our future, radical positions are in fact the most sensible. Here in so-called Australia, there is a peer refugee organization, RISE (2020). I gain a lot from observing their politics and processes. They take a more revolutionary approach. ZS: Like activism, research obviously does not happen in a vacuum. Universities themselves are increasingly corporatized. Students are now considered consumers, and universities compete with one another for prestige and reputation using the language of customer service. Massive reductions in public funding of Australian universities have contributed to a climate where many institutions have relied on income from international student fees (including your own!). In turn, academics are expected to bring money to their institutions through funding grants, and the ability to successfully obtain grants depends on reputation. This impacts who gets credit and recognition as “experts” (rarely communities, mostly individuals) and can also contribute to a culture of egoism and careerism. In an environment of “publish or perish” where productivity is measured by

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quantitative metrics, the often slow process of community engagement and partnered decision-making can be hurried, and community benefits are often an afterthought. You have been involved in research projects that received millions of dollars in funding and yet paid participants relatively little. This is quite a common practice that I have also witnessed – where research participants (without whom there would quite literally be no research) receive the smallest benefit and large sums of money are spent on staff salaries, buying out teaching, travel costs and other institutional infrastructure. Even when peers are engaged as part of the project, too often they are engaged only in a casual and ad hoc fashion (for example, being paid minimum wage for a fixed period of data collection) rather than engaged and funded as partners throughout a project’s conception, methodological design, data analysis, write up, and dissemination. What does the division of funds reveal about the status of research as big business and the value afforded to the community participants? NDC: Too often, research funding approved for projects on migrant sex workers allocates money to white middle class sex workers or nonpeers with PhDs. It positions them as authoritative on migrant sex work, even if the project collaborates with the migrant community. The funding dictates the scale of the project. Well-funded projects result in more senior researchers, often nonpeer and male, having the capacity to do larger research that creates the dominant narrative about Asian migrant sex workers who are mostly women. Further, the race, gender, and class disparity of the subjects and the researcher mean that the people who are least likely to understand the needs of marginalized subjects lead the research while also being the least likely to be held accountable due to their seniority and position at a university. The situation is compounded when the funding is significant. Research councils have an incentive to defend researchers in order to justify their spending. Even if the researchers do not profit monetarily from the project, they still gain social and cultural capital for their careers. Researchers design the research questions, formulate methods, determine funding division, and craft the final thesis, which prioritize their own interests. Socially engaged research also often involves partner organizations which become a kind of human resource and recruitment center to source research participants for the researchers. When choosing partner organizations, researchers will often approach organizations likely to deliver the kind of migrant experience they seek to represent. For example, a researcher may go to NGOs advocating for the Swedish model (which criminalizes clients) to source migrants who might have been trafficked. Alternatively, a researcher that supports decriminalization might source their subjects primarily from peer sex worker NGOs. Neither of these situations supports selfadvocacy for migrant sex workers. Instead, they are buying migrant narratives for profit. I was a participant of the SEXHUM (Sexual Humanitarianism: Migration, Sex Work, Trafficking) research project (SEXHUM 2020), which is an example of a well-funded research that received 1,600,000 Euros (European Research Council 2016), but which failed to prioritize the needs or well-being of migrant sex workers.

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For instance, the research failed to invite participants of the research to the researcher’s presentation on initial findings. We were treated as last consideration after NGOs and other university and government stakeholders. Further, the methodologies and the questions asked were preformulated by the researchers, rather than being collectively workshopped or instigated by migrant sex workers. Some migrant sex workers in Australia complained about the interview processes of the research, including that nonpeers were coming into brothels when sex worker organizations had explicitly asked them not to. In effect, the researchers were not only buying the narratives of migrants and activists, but also utilizing NGOs, such as Scarlet Alliance, and the Sex Workers Outreach Project (SWOP NSW), as social capital, insinuating that their project was endorsed and approved by local sex workers. Both organizations had initially agreed to be on an advisory committee for the research, but later issued an apology to migrant sex workers and distanced themselves from the project (Scarlet Alliance 2019). Meanwhile, the researchers now travel the world as experts on migrant sex work at activist and academic events, further silencing migrant sex workers by their re-representation. Universities do not have processes for creation or advocacy for the most ethical and most morally reflective researchers. Instead, they reproduce the class and racial structures which promote the most capable according to western standards. This means the most innovative or new research with researchers that fit culturally into the elite class of white academia. Researchers are also expected by the university to be authoritative on any given subject. While being critical or reflective is superficially engaged, this is rarely about being critical of foundational methodologies and pedagogy itself. This results in many researchers being confident that they are more informed than the migrant sex workers on the topic of migrant sex work. They think that our knowledge can be possessed. It is reasonable to assume that most migrant sex workers would not like to be criminalized nor deported, even when such a law is presented as being for our own good. It is clear that we must do more critical research on the research industry itself. Yet, who will fund a research that interrogates itself? Currently, most researchers, both on the right and the left of the political line, are collaborating to keep the industry functioning as it exists without challenging its role in the continuation of colonial practices. From my view, the role of Human Research Ethics Committees is to protect the university from legal liability and reputational risk. For example, my previous reporting of questionable nonpeer art exhibition to a university ethics committee was met by denial of culpability. This was an art exhibition at a recently closed brothel in Naarm (Melbourne) where workers were suddenly denied entry with all their locker contents in the brothels. The university exhibition utilized the equipment and rooms for voyeuristic and “edgy” art without consulting the recently unemployed sex workers. The university shut down the exhibition only after we (VIXEN Collective at that time) went to the press. ZS: Sex worker organizations around the world have begun developing guidelines for working with researchers that demand a “nothing about us without us” approach that requires sex worker involvement at every step of the way, payments

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that value sex workers’ time and expertise, and benefits for sex worker communities. However, peer research also brings complexities where all sex workers are assumed to have shared experiences. Our communities are stratified across race, gender, HIV, and migrant status and often have wildly disparate experiences and needs. Researchers should not insert a white, English-speaking sex worker into a project and assume that they represent all sex workers – but unfortunately sometimes this is exactly what happens. Representations of migrant sex workers in research are not always selfdeterministic, but rather editorialized lenses that reflect the self-interest and privileged preoccupations of researchers. Marginalized groups are encouraged to put themselves on display for capitalist assimilation and consumption, are invited to participate in law reform processes to tick a box for “consultation,” or are exploited for the purposes of research or used for the purposes of diversity signaling. What are the risks of co-optation and assimilation when migrant sex workers engage in this kind of representational work? NDC: Often, in community organizing, even within peer and migrant organizations, representation and leadership are taken up by individuals without significant migrant sex worker experience. For example, the representative might be Asian, but be born a citizen of a settler-colonial nation, or they might have only engaged in sex work for a year, or have grown up in the West and have never engaged in sex work as a migrant. In effect, this can mean that those who most closely align with whiteness that support capitalist institutions through their political and cultural messaging occupy leadership positions. The fact that a person is Asian or racialized does not guarantee that the person is theorizing to the best of their ability for the advocacy of other racialized peoples and against white supremacy. I have been complicit in many “consultations” where I was not given enough information nor education to comment on a policy. Sometimes, simply the fact of “consultation” is used to tick an accountability box that demonstrates a process took place, regardless of whether the consultation actually results in disagreement or dissent. A peer group might equally be a group of NGO workers who are paid to sit in migrant consultation group with the expectation that we will agree to what the organizations have already decided. On many of those occasions, in peer organizations, the subsequent policy messages were not necessarily wrong or harmful. Rather, it was often helpful for migrants. Yet, they did not represent consensus nor build capacity for migrants’ self-advocacy. It’s more likely that individual concerns are dismissed rather than having the capacity to discuss and create from arising issues. This is disappointing when white sex workers, researchers, and NGOs do to migrants exactly what they do not want done by their nonpeers. This works to maintain an aesthetic of diversity while failing to materialize any significant benefit. ZS: What does all this mean in practice, for strategically navigating these systems? NDC: Unfortunately, sometimes strategic representation is necessary. In some respects, we must accept that we have to fight for better laws and policies as a way of survival in the system. Political representation may be necessary for advocacy, and

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yet it has its problems. We should refrain from focusing upon individual identities and aesthetics and instead make political demands. This means not focusing on individual stories, but also not conflating reforms as revolutions or leading toward revolutions. Rather than focus on who we should represent, we might better think of our project as one that works against institutions. This is to refrain from positive representation in research, and instead to address politics by researching the institutions themselves: their relationships to communities, their researchers’ profiles, and the systems of knowledge production. It is more beneficial to fight for our own place in knowledge production by inquiring into our own practices and acknowledging the hierarchical structures we are complicit in. We also need to be more attune to who we are writing for and who we are in conversation with. For instance, even when I am writing on antiracist sex worker politics, I am careful in choosing which ideologies and which specific people I take leadership from. Even as a person who has lived most of my life undocumented, and as an Asian migrant sex worker of a few decades, I do not represent all migrant sex workers. I do not align with Asian people who are liberal capitalists and who retain their antiblackness. I deliberately do not reference Liberal Aboriginal and Asian scholars who are just arguing for inclusion and diversity, or black capitalist scholars who might believe in what Jared Ball (2020) calls “belief in black buying power,” the trafficking survivors who theorize that criminalization of clients would have helped them, and even liberal Jewish scholars who have nothing to say about colonialism. I want to abolish whiteness or antiblackness and the hierarchy of racial capitalist class. This means choosing scholarship that guides work in opposition to the neoliberal agenda of some sex work activism and most of the academic research industry. I decided to follow mostly Black radical scholars because they best address issues of border creation, capitalism, and what it means to be a citizen in the settlercolonial West. These are all relevant to migrant sex workers and yet have been insufficiently and inadequately addressed by sex work research. ZS: These are instructive distinctions for discerning a research path forward. You further suggest that a more useful task is to participate in practices of undoing and untangling ourselves from the ideologies we have inherited from academic institutions. This reminded me of Jack Halberstam’s (2011, pp. 6–8) work where they encourage “rogue intellectuals” who reject the professionalization of learning and the gatekeeping of knowledge and instead drop out from established institutions to create “alternative cultural and academic realms.” What would this practice of undoing look like to you? What might community engagement and personal responsibility look like (for activists, researchers) outside bureaucratic or institutional requirements? NDC: There is no such thing as an alternative model outside of institutions, and trying to create different models with the claim of being outside while still embedded in the system only reproduces the problems in more problematic ways. Being rogue has its dangers of careerism, individualism, and entrepreneurism, often leading to representational roles for media and NGOs. This is especially in context of NGOs and social researchers in the West.

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This does not mean that we give up. Rather, if we use the framework of racial realism, it is about doing our best to minimize harms while being cognizant of these issues. This means more realistic representation of our projects. For instance, we might work toward full decriminalization or prison reforms without stating that it is, or heading toward, a revolutionary or radical project. This preserves the revolution as being distinctly about ending racial capitalism, rather than assimilation. Further, it is about strengthening our conviction to not make concessions that permit ongoing criminalization of migrants or street-based sex workers. We reject concessions because we recognize that reform is a very limited project that is not worth throwing the most vulnerable under the bus. In other words, we lose our false hope in reformism. Our goals need to be more revolutionary, and the only way toward a revolution is by organizing toward this process, not working toward reform or working within a system. In relation to research, we might also advocate for and support revolutionary theories. Our critical theories have been significantly curtailed by western-centric and white, anticommunist, and proliberal representative democratic pedagogy. This must all be reevaluated. ZS: Towards these goals, how do strategies of negativity and refusal operate here to confront neoliberal cultural institutions? What tangible, practical work people could be doing instead of seeking to incorporate marginalized communities into their research projects? NDC: This reevaluation might be thought of as negativity. There is one definition of negativity as being critical of the research industry. Another sense is more about abstraction (Noys 2010). Rather than research peoples who are marginalized by the system and represent them as how the institutional structures molded them, we might question the structural issues that shape these representations. To clarify, this means we research the institutions, fundings, epistemologies, methodologies, and histories of the knowledge industrial complex, known as academia. Such a project might result in counterhistories. But these should not be simply another hierarchical research project done to a marginalized group. Rather, a social researcher could share their skills and mobilize a marginalized group to research the institutions – the abstraction is the negativity that exposes the concrete conditions that are creating marginalization and hierarchy. Negativity is also helpful in not having false hope. I cannot tell you how exactly a revolution should or will arrive. We can remain critical until such a day might arrive. Perhaps it never will. Perhaps white supremacy just continues, and capitalism will bring humanity’s end. Either way, we try our best. Refusal is more simple to understand and more difficult to achieve. This means refusing to engage with harmful practices once they are recognized. There are other issues to address in rethinking revolution such as the problematic inevitability of western Enlightenment ideals being realized through the very language of a revolution – issues to be discussed for another day. Last, I am just a student and not a scholar or student of Black radical tradition. Consequently, I most probably said many questionable things – for which I would like to apologize. This was written in the context of white liberal education with little

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to no radical theory. Most of the literature used here are my own research while enrolled full time in a university that is virtually devoid of and counters said literatures. Surprisingly, MOST lecturers have been very encouraging and welcoming. I will continue studying racial capitalism, revolutionary theories, and its relation to liberalism and Enlightenment – despite the lack of supervisors and space for these theories here in “Australia.”

3

Conclusion and Future Directions

ZS: As a white settler in sex worker spaces, I am grateful to listen to accounts like this and acknowledge the emotional, educative labor that goes into spelling out these issues repeatedly over many years before things ever change. I realize that this can be lonely and frustrating work. Although many sex workers express investment in racial justice, prison abolition, and different kinds of world-building, our energies have not always been spent wisely and have often not resulted in material change. Too often, whiteness, settler narratives, and respectability politics have shaped the ways we respond to stigma, the way we organize, and our willingness to accept the terms, conditions, and intentions of researchers without due scrutiny, which also impact how we diagnose problems and identify solutions. I want to recognize the many migrant First Nation sex workers who are active in peer support, outreach roles, working groups, and steering committees or are driving their own mutual aid collectives. As Nada has pointed out, such positions and mechanisms for involvement are often created too little, too late, or via narrow and tokenistic pathways. Our end goals, our advocacy messages, our workplaces, and our research agendas would be substantially different if people of color were leading and driving our work with the urgent priority of dismantling white supremacy, colonialism, and racial capitalism. This conversation also speaks about the importance of generating a sex worker movement that is devolved and decentralized, with different ways of collaborating, participating, and organizing outside formal structures. It cautions us to be suspicious of how funding can steer the direction of our organizing, and how incorpora tion changes our operational structures, resulting in more bureaucracy and less grass roots action. Recently, many sex worker organizations have devolved from the AIDS Councils under which they were historically auspiced and claimed independence. As subcommunities of sex workers inevitably break away from community organizations to form independent projects, we are reminded that the sex worker rights/ liberation movement – as a movement – is broader than the goals, missions, and objectives of our incorporated associations. As someone who has been a peer researcher and seen the inner workings of institutional approaches to research, material benefit is often seen as an afterthought or a bonus. Sex workers cannot just be “added and stirred” to research projects. Imagine if we used the resources at hand to expose the workings of the knowledge industrial complex, to chart how funding is distributed, to uncover how police, immigration, and media work together, to scrutinize how whiteness affects our

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movement goals, to identify strategies for decolonization, and to measure the reach of the racial contract. Instead of accepting token crumbs, what if we decided we deserved better? Instead of just placing caveats and conditions on our relationships with researchers, what if we upskilled communities to do our own research and investigations and mobilize in ways that mean we do not rely on the academy at all? This would be a better use of our energies than facilitating researchers’ access to our “hard to reach” communities. Sex workers are hard to reach for a reason. Finally, this conversation reminds us about the importance of paving liberatory futures. We need peer education about critical race theories and workshopping of radical imaginaries. So often, sex workers respond to what is invariably called dominant, second-wave, anti-sex work, abolitionist, radical feminism, because this holds such power and influence with governments and media. When our movement is dominated by white sex workers, we often end up with a respectability campaign comprised of defensive narratives of empowerment or autonomy. Too often this reactionary work distracts us from the more pressing sociopolitical work of anticolonialism, and it also obscures the critical ways in which race shapes understandings of value, worth, and mobility. Historically, in many respects, the sex worker movement has been brazen and unapologetic – about rejecting police, criminalization, and state power. It is long overdue that we channel this fury more wisely and in solidarity with racialized sex workers. NDC: The context in which research and organizing occur matters. Asian migrant sex workers are often silenced or otherwise not given opportunities for a liberatory education that is necessary for a meaningful self-advocacy. The gatekeeping of radical knowledge within liberal capitalist frameworks along with cultures of careerism and self-interest – among social researchers, NGOs, the arts, and education industries – affects how people are encouraged to engage. It affects the kinds of research partnerships agreed to. It steers sex worker activism toward inclusion into neoliberal institutions rather than emancipation from them. Our education system itself often encourages us to study and showcase individuals or even collectives rather than addressing the systematic, historical, and material conditions which cause marginalization. I think there is a need for us to examine liberalism and Enlightenment theories in sex work activism. Examining these theories will illuminate how the movement is swayed by performative progress or false hope, without creating meaningful changes. The lack of liberatory theories is not specific to Asian migrant sex workers but pervades our entire activism and liberal education system. The representation as a sex worker or a migrant means very little when our thoughts and actions do not oppose the larger systems and institutions. We cannot have a more inclusive research when inclusion means assimilation into neoliberal capitalist system. This is assimilation into the very system that oppress us. It is necessity for the research industry to emancipate from the system. I could ask that white academics refuse power, but this is rare and largely unrealistic. Instead, I urge the researchers to research their own institutions and knowledge industrial complex. I do not think a “less racist” movement or education system is possible, not because people are not trying, but because the issue is embedded. For example,

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we are trying to address racism by using a racist knowledge system within racialized colonial institutions and policies. Nevertheless, it is the role of theorists, artists, and activists to think and create and exist rather than lead toward perpetuation of same dominant issues. The first place to begin is in understanding this embeddedness by researching bottom-up. In other words, research the research industry.

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Final%20Report%20 %20Inquiry%20into%20the%20Regulation%20of%20Brot.pdf. Accessed 25 July 2020. SEXHUM. (2020). Global key findings. SEXHUM. https://sexhum.org/key findings/. Accessed 18 Sept 2020. Spivak, G. (1988). Can the subaltern speak. In P. Williams & L. Chrisman (Eds.), Colonial discourse and post colonial theory (p. 1994). London: Routledge. SWOP NT. Reforming regulations of the sex industry in the northern territory, Parliamentary submissions: SWOP NT Collective submission, NTAHC: Northern Territory AIDS & hepatitis council, 29 March 2019. https://www.ntahc.org.au/programs/sex worker outreach program swop nt/parliamentary submissions. Accessed 13 Sept 2020. Sydney Morning Herald. (2005). The lies that kept Vivian Alvarez hidden for years August 10. The Sydney Morning Herald. https://www.smh.com.au/national/the lies that kept vivian alvarez hidden for years 20050820 gdlwu8.html. Accessed 29 Oct 2020. Tripp, H. (2019). All sex workers deserve protection: How FOSTA/SESTA overlooks consensual sex workers in an attempt to protect sex trafficking victims. Penn State Law Review, 124(1), 219 246. Tuck, E., & Yang, W. (2012). Decolonization is not a metaphor. Decolonization: Indigeneity, Education & Society, 1(1), 1 40. Tuhiwai Smith, L. (2012). Decolonizing methodologies: Research and indigenous peoples (2nd ed.). London/New York: Zed Books.

Social Inclusion and Research Ethical Considerations

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Ethics of Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Ethical Governance and Research Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Research Integrity and Ethical Considerations in Research . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Social Inclusion and Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Research Practice from Idea to Usage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Finding: Research Topic and Questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Designing: Research Method(Ologies) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Informing: Research Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Doing: Research Encounters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Understanding: Research Analysis/Interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Reporting: Research Writing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7 Acting: Research Dissemination and Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Research is an endeavor marked by privilege and authority, prone to misconduct, and shaped by responsibilities and relationships. Ethical issues undeniably permeate all research, and it is important that questions of ethical practice in research and the ethical foundations of research be addressed along a broad spectrum of issues that includes research processes, methods, and purposes; forms of interpretation; and issues related to the values and ethical choices of those who conduct the research. Research ethics introduces complexity into research processes. While the standards and ethical principles of research may (often) seem very simple, ethical dilemmas and controversies abound in research practice. Research ethics is about conducting research responsibly and in a morally A. M. Sobočan (*) Faculty of Social Work, University of Ljubljana, Ljubljana, Slovenia e mail: [email protected] lj.si © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_29

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defensible manner while adhering to relevant ethical principles. Many researchers in the field of social inclusion would certainly agree that the ethical lens needs to go beyond a legalistic and codified understanding of research ethics to address the sociopolitical embeddedness of ethical principles and how research can serve as a means of providing knowledge, improving social justice, realizing human rights, and mobilizing social equality and inclusion. In this context, this chapter raises issues related to research ethics and integrity and suggests possible ethical considerations for research from its inception to possible social action, calling for researchers to develop ethical awareness. Ethical practice involves anticipating and responding to ethical dilemmas and taking ethical considerations into account (at every stage of the research process). Keywords

Research ethics · Research integrity · Research stages · Inclusion · Method · Population · Dissemination · Informed consent · Reflexivity · Values · Relationships

1

Introduction

Research is a complex endeavor. When we speak of research, we usually mean an investigation of a particular subject, using scientific methods to create new knowledge or to use existing knowledge to gain new understandings, and we often think first of a researcher trying to decipher or understand a particular phenomenon or answer a particular question. Research provides knowledge and insights that are critical to our “health, well-being, freedom and human rights and actually the survival of human beings, other species and the planet” (Iphofen 2020, p. 7). As Iphofen (2020) points out, scientific findings can be flawed, but these flaws should not be the result of conflicts of interest, malicious intent, or incompetence – and this is why ethics and integrity are essential in research. Like any social practice, research is fraught with relationships, interests, and values, and these generate challenges, conflicts, and dilemmas. How these are identified, reflected upon, and managed is a matter of ethical scrutiny and integrity, and therefore, ethical governance and ethical considerations are essential to any research endeavor. Namely, research as scientific inquiry, traditionally conducted by professional researchers and students, by practitioners in various professions (in recent decades), and by research participants and people sometimes referred to as “experts by experience,” is an endeavor characterized by privilege and (epistemic) authority. Who is allowed to hold and exercise the role of researcher – one whose narrative is usually recognized (to a greater or lesser degree) as legitimate and valid for reporting on the issues of public interest being studied and on the stories of the people whose problems and lives have been researched – is a matter of epistemic, as well as social justice. Discussing the role of research in society uncovers the social aspects of knowledge, such as issues of trust and accountability, the recognition and validity of expertise, the reliability of peer review, the impact of research funding, the power

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of academic elites, and so on. The complexity and contested nature and utility of research begins here: What is considered knowledge, how is knowledge valued and judged, and who gets to be recognized as having access to (and/or creating) knowledge, as well as what is justified in the name of knowledge. Research as scholarly conduct is prone to malpractice, and in the research field, there are individuals who commit research misconduct or practices that do not comply with institutional, legal, and other research-related policies and rules. Usually, plagiarism and fabrication, falsification and research misconduct are defined as fairly straightforward, but questionable research practices pose a greater challenge especially because of their ambiguity (Yeo-Teh and Tang 2020). The Helsinki Declaration (WMA 1964) promulgates the idea that all research involving human subjects should be accountable – and to that end, subject to a formal process of ethical review. Nevertheless, formalized guidelines may deceptively lead to overlook the more subtle ethical issues that are relevant to qualitative research, and the nature of these issues which are characterized by complexity, conflict and tension, fluidity, and uncertainty (Denzin and Giardina 2007; Lincoln and Cannella 2009; Liamputtong 2020). Finally, research as a social institution is about responsibilities and relationships. Research is a process that directly or indirectly involves a range of actors (researcher (s), research participants and associated communities, gatekeepers, academic and professional communities, review committee members, funders, editors, reviewers, the wider public, and so on), who exercise their interests and apply their values that produce and influence research outcomes and consequences for research participants and their communities, for researchers, for scientific communities and science, and ultimately for society. It is a social practice, permeated with ethics and politics, and this inflicts researchers with responsibilities (D’Cruz and Jones 2004). Research is about the creation of knowledge; it is not the role of knowledge ultimately to serve the goal of advancing our societies and human well-being. Researchers can contribute to these goals, and this chapter presents information on how it is the responsibility of researchers to do so, and that this is a constitutive part of doing research ethically.

2

Ethics of Research

2.1

Ethical Governance and Research Ethics

Ethical standards for research derive from the goals of research, which, according to Resnik (1998), consist of epistemic and practical aims. Epistemic goals are about generating new knowledge; they include the creation of new theories, predictions, and teaching the research methodologies to the next generation of researchers. Practical goals are about solutions – finding, testing, and implementing solutions – to problems in our societies, e.g., health, well-being, social cohesion, environment, and safety (Resnik 1998); in addition to the research goals, moral foundations are of course crucial to ethical standards. Morals and research practices are the basis of norms of conduct that are expressed in researchers’ codes of ethics, as shown, for example, in the issue of falsification of data: This is considered a misconduct, as

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honesty is considered a commonly agreed moral norm, but is also expected in order for the data to be reliable (Resnik 1998). Research ethics introduces complexity into the research processes. Namely, research ethics involves ontological, epistemological, and theoretical assumptions (Payne 2000). While the standards and ethical principles of research may (often) seem very straightforward, ethical dilemmas and controversies abound in research practice. Research ethics is about conducting research while adhering to relevant ethical principles, responsibly and in a morally defensible manner. How can a study be conducted in an ethical manner, and is it ethical to conduct a particular study at all, asks Godfrey (2006), distinguishing between these two questions, but acknowledging that they are related. In asking whether a study should be conducted, he distinguishes between “ethically offensive studies” (which should not be conducted at all) and “ethically imperative studies” (where it might be unethical not to conduct a particular study), and “ethically acceptable studies” (there are no absolute ethical objections to the study, but it might just as well be that the study can be omitted) (Godfrey 2006). When asking what it takes to conduct a study that is ethically acceptable, he distinguishes between “unacceptable designs” (too little regard for ethical considerations), “improvable designs,” and “unexceptionable designs” (no improvements can be suggested). Combinations of both criteria form the basis of ethical review considerations by research ethics committees (REC) (also known as Human Research Ethics Committees or Institutional Review Boards) in deciding whether particular studies may be conducted (Liamputtong et al. 2022). Any research involving human subjects could fall under the review of RECs, which have been established in many parts of the world, particularly in recent decades. Originally conceived for biomedical research (in response to the Helsinki Declaration (WMA 1964)), RECs have become common since the mid-1960s, and there is now very widespread use of such committees, both with professional researchers, and in higher education, where students conduct research. As a result, most professional associations, and educational institutions, have created their own codes of ethics and established committees to review the ethical aspects of research. For example, the ESRC (2017) in the UK indicates that the following research should receive special attention in terms of ethics and accountability: • Research involving vulnerable groups (examples include children and youth, people with learning disabilities and/or special needs, and those dependent on others). • Research involving sensitive topics (examples include people who have experienced abuse or violence; topics linked to illegal activities or sexual activities). • Research where research participants can only be reached via gatekeepers (examples include some ethnic groups, subcultures). • Research involving deceptive practices (such as covert observation) and is conducted without participants informed and/or full consent. • Research involving access to confidential information or records. • Research that could bring about anxiety, stress, or humiliation to the research participants. • Research involving intrusive methods or demands from research participants.

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RECs rely on guidelines and standards that are commonly agreed upon to highlight issues that usually require special attention from a research ethics perspective. These typically include maximizing benefits (for individuals and society) and minimizing harms; protecting people’s rights and dignity, including respect for their moral autonomy; ensuring that participation is voluntary and appropriately informed; maintaining the independence of research from conflicts or interests; conducting research with integrity, honesty, and transparency; and maintaining the quality of research (using sound research design, ensuring researcher competence, and so on). There is also now an expectation that both individual researchers (or teams) and the institutions that employ them are ethically responsible for the research project. There is also increasing recognition that accountability for ethical behavior extends to the whole project. The ethical principles of research are constantly evolving, The role of RECs is to provide ethical oversight of the research, and their value and importance lies in safeguarding these key principles of ethical research. The decisions of RECs are critical to whether the research is funded, access is granted and often also if the study will get published, but their role extends beyond this, as the need for the ethical review process also confirms an institutional and, in fact, societal commitment to the ethical accountability of research. At the same time, the role and value of RECs is also contested: Sometimes, they are portrayed as a barrier to conducting research (especially nontraditional research), when in reality, they should be expected to provide researchers with advice, guidance, and insight into matters they may not have thought of. Ethical governance in the form of ethics review boards and ethical standards for research, also referred to as “procedural ethics” (Guillemin and Gillam 2004), is often experienced by qualitative researchers as overly restrictive and formalized. Unlike quantitative research, qualitative research is often subject to an open-ended inquiry and relies on the emerging data to guide further data collection, analysis, and interpretation (Liamputtong 2020). As such, it does not readily fall within the process of ethical review and, as many authors have argued, is often questioned for not specifying the research process sufficiently, or even rejected on the grounds of futility. Guidelines specifying the process of institutional ethics have in recent years included sections specific to qualitative research (e.g., National Statement on Ethical Conduct in Human Research 2018). Another aspect of research governance and regulation (both at the international and national level) that should be mentioned is that it is universalizing and has only recently been challenged by Indigenous knowledge: As a result, countries such as USA, Canada, Australia, New Zealand, Taiwan, and the Philippines have created codes and guidelines that specifically address Indigenous research (Israel 2020). These guidelines rarely refer to, let alone reflect, Indigenous epistemologies but are usually used to structure negotiations with non-Indigenous people or to establish relationships between Indigenous concepts of knowledge, research, and ethics (Israel 2020). The decolonization of research methodologies is an ongoing process, but the decolonization of research ethics has yet to catch up (Israel 2020). Furthermore, despite the universalizing nature of ethical guidelines, there is a lack of harmonized, international approaches, which could contribute to “ethics dumping” (ethically sensitive research conducted in places, where standards are looser or different than in the country of origin) (European Commission n.d.).

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Finally, it is often argued that ethics cannot be formalized, because ethical research conduct is a matter of personal judgment and responsibility. Research governance is one aspect of research management, but adherence to the ethical protocol and research plan validated through the ethics review process is not sufficient when the researcher is conducting the actual research, and unexpected situations arise, when the researcher is “forced to make immediate decisions about ethical concerns, or when information is revealed that suggests you or your participants are at risk” (Guillemin and Gillam 2004, p. 273). On the other hand, some studies may be classified as exempt from ethical review, but this does not mean that they do not require ethical consideration and reflection. As shown in this chapter, an ethical perspective must be applied to every study, even if “only” through the integrity of the researcher and ethical scrutiny by the study team/principal investigator/funder.

2.2

Research Integrity and Ethical Considerations in Research

Ethical research must be seen as a joint effort by all research participants: Researchers, participants, funders, sponsors, and reviewers (Iphofen 2020) all must support the integrity of the research. Integrity is defined in different ways in different countries, but it is most often contrasted with the term “misconduct,” which is associated with accountability in the legal sphere. For example, All European Academies’ European Code of Conduct for Research Integrity refers to reliability, honesty, respect, and accountability (ALLEA 2017). The Singapore Statement on Research Integrity (WCRIF 2010) speaks of honesty, accountability, professional courtesy and fairness, good stewardship in research, and 14 professional responsibilities that should be considered universal. Research integrity is understood by some authors as a combination of a set of guidelines and a set of internalized norms or perceptions of what are acceptable and ethical research practices (Penders et al. 2020). Research ethics and research integrity are sometimes used as complementary, such that research integrity encompasses those aspects of research that are not central to research ethics governance, or are sometimes even invisible; sometimes, research integrity is used as a broader term but includes “research ethics” (Hammersley 2020). Research integrity is often understood to encompass the ethical virtues of researchers, complementing both research ethics and ethical governance, all of which together make up “good research.” There is no single definition of “integrity,” but Meriste and colleagues (2016, cited in Sutrop et al. 2020, p. 75), for example, have analyzed the academic literature on scientific integrity and found that it is attributed to four contexts: a) research outputs, b) individual researchers, c) research institutions, and d) science as a social system. In relation to research outputs, integrity is described as relating to the production of reliable, verifiable, and accurate research outputs (e.g., Singapore Statement on Research Integrity in WCRIF 2010; Anderson et al. 2013, cited in Sutrop et al. 2020, p. 76). Researcher integrity describes a commitment to relevant values and norms. It can refer to either the coherence of the researcher’s value system

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or the coherence between the researcher’s values and actions, and violations of integrity include a failure to adopt relevant values or a failure to behave in accordance with those values (Mcfall 1987; Fjellstrom 2005; Meriste et al. 2016, are all cited in Sutrop et al. 2020, p. 76). Research integrity is, thus, about conducting research to the highest ethical standards and professional quality. High-quality research is rigorous, methodologically sound, transparent, and (in cases where this is possible) reproducible. As such, it can contribute to scientific progress, promote community trust in scientific knowledge, inform policies and interventions, and effect change in society. However, the quality of research also relates to the skills and abilities of the researcher, which are acquired not only through learning the research methods, but also through experience in conducting the research, and constitute tacit knowledge. Mentorship and working with fellow researchers in effective and sustainable relationships are critical to sustaining scholarly practice (Bezuidemhout 2017). Furthermore, the focus is on how the individual researcher contributes to the goals of scientific research, while scholars in various fields have long emphasized science as a collaborative endeavor (cf. Merton 1942; Kuhn 1970), and cornerstones of this include openness of data and methods, data sharing, collaboration, and so on – all of which are crucial to the advancement of science (Bezuidemhout 2017), while a breach of these constitutes ethical misconduct such as plagiarism, manipulation of citations, falsification and corruption of data, etc. Furthermore, it is now widely accepted that responsibility lies not only on individual researchers, but also at the organizational level, as many authors claim (Forsberg et al. 2018; Sutrop et al. 2020). Organizations can support misconduct by valuing or accepting certain unethical activities or expecting performance without paying attention to how they are achieved; by promoting attitudes and techniques that reduce the feeling of guilt, for example, when harming others; and by fostering an organizational culture that creates conditions or encourages misconduct (e.g., competitive mindset without regard to losses) (Greve et al. 2010, cited in Sutrop et al. 2020, p. 84). It should be noted that the dependence of research institutions (universities, research institutes, and so forth) on funders for sponsorship and that of researchers on research performance for grants, tenure, and promotions have implications for academic integrity and increase the risks for unethical behavior by researchers and institutions (Israel 2014; Hammersley 2020). After all, ethics and moral theory are about making judgments – about actions and experiences as good or bad (Preissle and Han 2012). Research ethics is usually understood as a set of moral values and virtues, principles, and standards that are the indicators of ethical research practice and behavior. What is actually central is not how to prevent unethical research behavior, but how to encourage and support researchers to act ethically in all cases. This is along the lines of virtue ethics, and some authors are quite critical of codes of ethics, arguing that they are mainly there to prevent litigation but do not really help researchers answer the wide range of questions and dilemmas that arise before, during, and after research. The potential harm in qualitative research is often quite subtle, and the risks arise from the interaction between the researcher and the research participant. It is in the

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interactions between researcher and research participant that the opportunities and possibilities for respecting people’s autonomy, dignity, and privacy lie. Consequently, it is here where the integrity of the researcher is tested and proven.

2.3

Social Inclusion and Research

Many researchers in the field of social inclusion would agree that the ethical lens must extend beyond legalistic and codified understandings of research ethics to address the sociopolitical embeddedness of ethical principles and how research can serve as a means of providing knowledge, improving social justice, realizing human rights, and mobilizing social equality and inclusion. In relation to social work research, D’Cruz and Jones (2004) distinguish between a liberal and a radical lens applied by researchers. When viewing research through a liberal lens, the researcher views themselves as an independent researcher who follows codes of conduct and professional techniques to produce new knowledge. However, through a radical lens, the researcher is viewed as someone who takes on a different role. The researcher is a social actor who recognizes that their activities and research decisions contribute to the reproduction and/or transformation of existing social relations – of inclusion or exclusion, of domination or oppression (D’Cruz and Jones 2004). This chapter agrees with this political perspective and acknowledges that the study of social inclusion may imply the need to adopt the principles of critical social research, that is, to seek to analyze subjective and objective realities as intertwined and to use political and historical context to combine the dimensions of interpretive stance and social causality approach (Humphries 2008). The main premises of critical social research are that social structures are oppressive, maintained by political and economic power, and legitimized by a variety of strategies that need to be made visible and investigated in order to uncover what oppressive and exploitative practices underpin them (Humphries 2008). Critical social research is thus interested in domination and social arrangements that enable and maintain power relations in order to look for ways to combat oppressive structures (Humphries 2008). Ethical considerations in social inclusion research might find a counterpart in ethical issues in community-based, participatory, and action-oriented forms of research. These approaches feed from the understanding that research (in the social sciences) can be linked to action and influence social change; from the importance of including people with experience in research so that they can complement the professional knowledge of the researcher with their lived expertise; and from the recognition that knowledge production and dissemination (or education) should be democratized and begin to include those who have been denied access or whose knowledge has been excluded. The latter relates to the critical pedagogy of Paulo Friere (1993) which asserts that researchers must engage in the process of critical consciousness – a process in which the researcher is self-reflexive, self-aware, and critically questions their consciousness in order to open their minds. Following this, according to Friere (1993), both the researcher and the research participants need to reflect and participate in meaning-making and emancipation. Therefore, critical

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consciousness will generate the capacity to enable participants to transform positions of vulnerability or opression and foreground their own experience and cultural and sociopolitical construction of the self in a congnitive and affective process that involves a reflective awareness of priviege, unbalanced power relations, and injustices in social relations (Friere 1993). Further, Hooks (2000) points out that a critical consciousness facilitates the researcher to better understand the world of participants, problems of representation, and power relations and to develop a research lens that is free from obsolescence and myopia, is more egalitarian, and supports transformative emancipatory insights. The value of such an approach is not only to do with social justice, but also has epistemic significance and contributes to epistemic justice, which we should also be particularly concerned with in social inclusion research. The latter is in line with feminist research ethics’ calls for empowerment, reflexivity, and reciprocity. Empowering research strives for more equal relationships between the researcher and the research subject and challenges conventional research models (which are hierarchical and often male-dominated) (Kingston 2020). Additionally, a feminist perspective demands that researchers practice reflexivity, reflect on the dimensions of power in the research relationship and acknowledge social position – their personal/cultural/social identities and biographies – apply self-critical analysis, and explain it transparently (Kingston 2020). Finally, reciprocity aims to ensure that research is mutually beneficial and that research ethics supports a commitment to conduct research “with” or “for” research participants rather than the traditional “to” (Kingston 2020). Knowledge production in feminist research should go beyond “doing no harm” and contribute to “doing good” and making a difference, with researchers taking a political stance and advocating for social change. Feminist methodologies, developed in the 1970s against a backdrop of gendered assumptions and taken-for-granted knowledge, growing recognition of social inequalities, and traditional notions of objectivity, have influenced the development of reflexive methodologies, participatory community approaches, discourse methods, interactive qualitative approaches, and visual and other creative research methods. Moreover, critical race theory, a body of scholarship and transformational movement, considers issues of various forms of oppression, racism, privilege, and power; clearly incorporates social justice goals (unlike many other theoretical frameworks); and not only promotes the inclusion of marginalized voices, but also demands that the injustices uncovered in the research study be addressed with appropriate action. All in all, in addition to adhering to accepted ethical practices and fundamental ethical principles, researchers are expected to be ethically accountable to society at large (Annex Commission Recommendation 2005/251/EC on the European Charter for Researchers and on a Code for Conduct for the Recruitment of Researchers, O.J. 2005, L 75/67). According to Humphries (2008, p. 31), “a research commitment not to be impartial to human suffering, to identify unjust (not just inefficient) processes and make them known, and to ensure that subordinated voices are hear and heeded, are entirely compatible with the best traditions of rigorous and systematic research approaches.”

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Research Practice from Idea to Usage

The idea that ethical considerations are relevant at all stages of the research process (Sobočan et al. 2019; Sobočan 2010) has gained increasing attention over the last decade and has also found its way into a number of declarations, codes, or guidelines. For example, the signatories of the New Brunswick Declaration state that they “believe that researchers must be held to professional standards of competence, integrity, and trust, which includes the expectation that they will act reflexively and responsibly as new ethical challenges arise before, during, and long after the completion of research projects” (van den Hoonaard and Hamilton 2016, p. 431). In this respect, researchers’ responsibility for ethical implementation of research extends through all stages of research – from planning to publication and use. Research practice should be defined by a skillful and relational approach that enables the implementation of values such as respect, integrity, and justice throughout the research. “Good researchers” will consider ethical issues throughout the research process: from the genesis of the research idea, through the conduct of the research, to the communication of the results (Iphofen 2020, p. 18). Even before the researcher can conduct a research, or more specifically a social inquiry, a number of decisions must be made, and these include the following: (a) the research problem to be investigated, (b) the research question(s) to be answered, (c) the research strategy(s) to be adopted to answer these questions, (d) the stance to be adopted by the researcher toward the researched (outsider/insider; expert/learner; on, for, or with people); and (e) the research paradigm (which includes assumptions about reality and how it can be investigated (Blaikie 2007, p. 5). After all these choices have been made, the researcher faces a number of further dilemmas in the field, while collecting data, as well as later on, during analysis stage, reporting, and dissemination. Therefore, Guillemin and Gillam (2004), p. 274) propose a process and a way of thinking that actually leads to ethical research practice, combining “procedural ethics” and “practical ethics” – reflexivity. Research is “an active process that requires scrutiny, reflection, and interrogation of the data, the researcher, the participants, and the context they inhabit,” and reflexivity becomes a necessary tool, a resource for ethical practice. Their “ethics in practice” (Guillemin and Gillam 2004) refers to the way ethics is actually applied in practice, including all its complexities: the unpredictable, often very subtle, but ethically crucial moments that occur during research in the field. Carolyn Ellis (2007) adds to this a “relational ethics,” closely linked to the ethics of care and feminist communitarian ethics, which recognizes and values mutual respect, dignity, and connectedness between researchers and researched. In this chapter, a research project is divided into the following steps: research idea, research question, research method, research population, research implementation, research analysis, research report, and research dissemination. In terms of research ethics and integrity, all these steps should be underpinned by the principles of honesty and integrity, the no-harm principle, respect, and social justice, characterized by the quality of the research and the skill of the researcher, by a thorough

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consideration of interests (and possible conflicts of interest), by the prospects of their use, and by data protection. Critical awareness could be a helpful approach to maintaining integrity and ethics: There is no single way to learn or teach it, but there is a requirement to be open and committed to reflexivity, to listen to others, to question one’s own assumptions, and to engage in dialog with research participants and ideas. It is about a commitment to ethical behavior that is situated and applied, empowering and reflexive.

3.1

Finding: Research Topic and Questions

Social inclusion research is driven by the belief that the conditions under which individuals and groups participate in society can be improved, and that knowledge and insight, gained by addressing relevant research problems and asking the right kinds of questions to produce valuable results, can help achieve this goal. Relevance is crucial to the quality and ethics of research. Constructing a relevant research problem to investigate involves identifying and looking at issues that may not have been problematized before; or taking a new perspective on an issue that has already been studied; or expanding a particular body of knowledge by examining the “how” or “why” of a particular phenomenon. In social inclusion research, a commitment to social justice is essential at the very conception of problem being studied, and the positionality of the researcher clearly expresses consideration of the implications and outcomes following engagement with a particular topic. In order to maintain research ethics and integrity, relevant and appropriate research questions must be identified. How research questions are identified and posed is also influenced not only by the social location of the researcher, but also by how they are positioned and what interests, assumptions, and experiences (or biographies) they bring to the project. How they are chosen also carries so much weight because research questions are central to a research project as they: organize the research project, give it direction and coherence; define the boundaries of the project; define the focus of the project; provide a framework for writing up the project; and point to the data that needs to be collected (Punch 1998, cited in D’Cruz and Jones 2004, p. 19). Considerations of what problems are worth investigating and what questions are relevant relate both to the potential impact of the research and the resources that will be used to produce the research. If the research problem and questions will not contribute to improvements, it can be argued that it was unethical to waste people’s time. Furthermore, if the researcher does not have the skills to carry out a particular research project (e.g., a very sensitive research), the research project could prove to be harmful to the subjects. Ultimately, the benefits of the proposed research, and the way we ask questions, must be weighed against the potential harms to individuals, communities, and society as a whole. The research must result in producing some potential impact (whether through the improvement of an existing body of scientific knowledge, or the discovery of new knowledge) that benefits society (see Penders et al. 2020).

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Finally, the way in which the research project is set up is also linked to the political processes to obtain funding and institutional approval to conduct the research. Authors caution that in recent years there have been increasing attempts to strategically direct research (Hammersley 2020), and therefore, research priorities may often be decided according to very practical and personal interests (such as the possibility of funding or the prospects for career advancement). Researchers should be prepared to consider a range of issues related to funding and funders, such as who the funding should not be accepted from (e.g., to maintain scientific independence), what potential conflicts of interest are involved, what the terms of funding are, etc., (Hammersley 2020). Ethical considerations also relate to researcher behaviors, namely the temptation to overstate research results and present them more grandiose than is possible in order to obtain funding. Ethical considerations might be reflected upon by asking questions, such as the following: • Why should this particular research problem be pursued? What motivates the researcher to research this topic? • Can the chosen topic be considered sensitive? • What does the researcher want to achieve by answering a particular research question? • What impact and contributions to society/science/community, etc. can be expected from researching this particular topic? • What/whose interests will be served by this research? • How much is already known about this topic? What knowledge do others have on this topic? • Is the research question framed in a way that includes bias? • Is the research question framed in a way that could benefit/harm the community in the research study? • Who will decide what to be researched? • Who will fund the research? What will be the requirements/restrictions of the funders? • Who will have access to the knowledge produced, who will decide this, and how will it be decided? • What are the quality criteria in the planned research, and what is their impact on the research and research participants and relationships?

3.2

Designing: Research Method(Ologies)

Methodologies and methods applied, along with appropriate sampling, are a means of obtaining answers to research questions. Certain research methodologies or approaches are designed to promote research ethics from the beginning of the study through the reporting of research findings. Such are for example feminist methodologies, critical race theory, and community-based, participatory, and actionoriented forms of research.

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The choice of methodology definitely involves a number of considerations: the purpose of the study, the nature of the research question, the research setting, consideration of the population, the positionality of the researcher, and so on. The choice is context-bound, and furthermore, different methods raise different ethical issues: There is a “complex interrelationship between methods and morality, between research design and its ethical consequences” (Iphofen 2020, p. 378). The choice of a particular method should be weighed not only in terms of epistemic considerations, rigor, and feasibility testing, but also in ethical terms. For example, many researchers using feminist methods aim to reduce power imbalances and promote an ethics of representation, so they regularly choose methods such as collaborative research, participatory action research, or autobiography and experimental ethnography (see Preissle and Han 2012). Many scholars today would advocate that research participants from a vulnerable group should be represented and participate in the research process, either all along, as coresearchers, or in specific stages of the process, as this might improve the research being less powerimbalanced, consent being free and informed (Iphofen 2020). A range of methods can be used in social inclusion research, most commonly those that are frequently in qualitative research, such as interviews, case studies, focus groups, ethnography, and visual data collection, and each of these methods brings with it a different set of issues and dilemmas in how it is actually implemented. There are a number of specific ethical considerations associated with each method. For example, upholding the value of privacy, i.e., the right of participants to keep certain information about themselves private, can create a number of dilemmas in the use of certain methods such as observation, interviewing, focus groups, and so forth. Or, thinking of the no-harm principle, a researcher might be concerned about how to select research respondents for interviews or focus groups, when the selection might impact their status and relationships in their environment (such as people living in a residential unit, or a care home). Even when using methods that can be seen to involve a high degree of respect, dignity, and participation, and which per se demand a reflexive researcher (such as participatory action research), certain issues need to be considered: Do all participants want to be empowered in the way that the research design envisages, or participate to the extent and capacity that the principal investigator expects? Again, reflexive attention needs to be paid during the project to how data is collected (Hammersley 2020), as dilemmas will regularly arise in any project. The core value is to respect human dignity, to examine the power relations inscribed in the relationship, and to allow for a balance of benefit and effort on the part of the subjects in relation to the particular research project. Ethical considerations can be reflected through questions such as the following: • Is the chosen method appropriate to answer the research question(s)? • Is this method appropriate for working with the selected research participants? In what ways will the method affect the research participants? • If the research is particularly sensitive, can a method be chosen that does not involve human subjects?

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• How will the method ensure or hinder privacy/confidentiality/anonymity? • How does the method affect who may be the researcher and about whom research may be conducted? What balances of resources and decision-making do these roles represent?

3.3

Informing: Research Population

Research ethics is primarily concerned with the people selected to contribute to, participate in, or respond to a study: The researcher’s duty is to protect them from harm, to respect their autonomy and dignity, and to be fair and honest with them (Liamputtong et al. 2022). Maintaining a research subject’s autonomy can sometimes be a difficult undertaking, and this is perhaps even more the case in social inclusion research where research participants are often declared “vulnerable.” Vulnerability is a socially constructed concept (Liamputtong 2007), and the researcher may appear paternalistic about the participation of certain subjects, particularly those labeled vulnerable. Assessing the vulnerability of subjects is related to their ability to give valid consent, and vulnerability in this context can refer both to cases where a participant is persuaded to participate (even if this is against their interests) and to those who are vulnerable to possible repercussions of the research process or findings (Iphofen 2020). Examples include being (re)traumatized during the research or having their identity and social status deteriorate as a result of the research being published. Authors also make a distinction between developmental, medical, and social vulnerability. Social, institutional, or hierarchical vulnerability refers to a voluntariness that may be threatened because of the respondent’s dependent relationship with the researcher or research team, such as in the case of students, prisoners, ethnic minorities and refugees, and so on (Sutrop and L uk 2020). Ethical considerations at this stage of the research include considerations of participant recruitment and research participants’ consent to participate. These can be related to issues such as sociocultural and political context, trust, knowing, and being known (e.g., Eide and Allen 2005). The ways in which people are coerced or feel obliged to participate (e.g., out of a sense of duty or because they believe in the researcher’s good intentions) can be very subtle and may even go unnoticed by the researcher. It becomes problematic if the motivation resonates a power imbalance between the researcher and the research participant. Similarly, participants should not feel, for example, that the treatment or services they receive are influenced by their decision to participate or not. Finally, overuse of research participants simply because they are available or malleable should be avoided (Christians 2007). Obtaining consent to participate and informing participants about the research study are important parts of the research process (Liamputtong et al. 2022). It is now widely accepted that obtaining consent is not a one-off event or statement, but a process that involves both the researcher and the subject throughout the research activity. The aim of informed consent is to protect values such as individual liberty, personal autonomy, and human dignity as well as trust – that research participants

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can expect to be treated with respect and that they will not be harmed (Resnik 2018). The process consists of obtaining consent (ensuring willingness to participate), information (ensuring that the research subject receives all the information necessary to make an informed decision), capacity (ensuring that the research subject can understand and process the information given), and competence (authorized responsibility associated with legal status – in cases where, for example, institutional leadership grants permission for an observational study within an organization) (Iphofen 2020). At a practical level, the issues associated with these considerations are about the form in which consent is sought and information given: how clear and unambiguous is consent and information given, how is competence assessed, and how is it ensured that consent is not in any way coerced or, for example, seen as a favor to the researcher, etc. There are various subtle and obvious limitations on people’s competence to express their voluntariness. Understanding and making decisions about participation might be least challenging for adults with no perceived impairments, while again sensitivity to when people’s decision-making might not be fully competent is important. Also, ensuring participation at the beginning of the data collection phase does not absolve the researcher from remaining vigilant and alert to whether there may be changes in subjects’ willingness to continue participating, and to check that they are continuously aware that they may decide not to participate at any time. There may also be exceptional situations where research participants cannot be informed about the study or cannot be fully informed about the study before it is conducted. In such cases, partial information will take place and the information will be provided in several steps. After subjects have received all the information, they should be given the opportunity to reevaluate their participation (and their data) and possibly withdraw. Another example of research in which participants are not informed is covert research. However, a study in which respondents are minimally informed or even deceived can only be considered acceptable if such actions are thoroughly justified, outweigh other considerations, harm is minimized, and benefits are clearly demonstrated. Related to data in biobanks and databases, new directions of consent have emerged in relation to how data will be used in the future, and debates are emerging about what participant autonomy is and how it should be respected (Sutrop and L uk 2020), and these approaches may also influence concepts of consent in wider research in the future. Aside from the challenges of conceptual understanding and balancing different values, there are also practical issues with informed consent that also need to be considered from an ethical perspective. For example, in some research situations, written consent may arouse distrust, and trust in the researcher could be damaged; in some cases, collecting data for consent may put participants at risk by revealing their identity; in some cases, a formal consent process may imply a transfer of “responsibility” from the researcher to the participant who has agreed to participate (Sutrop and L uk 2020). Informed consent encompasses a range of values, and in applying it, researchers should seek to navigate ethically between them, adopting a contextual approach in

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which reflexivity is used as a tool to balance the different values between individual freedom and autonomy, and solidarity and reciprocity (Sutrop and L uk 2020). Finally, another consideration that may be relevant to research on social inclusion is proposed by Williamson et al. (2020), discussing research on moral injury, that researchers must face the inevitable dilemma that their careers are furthered by studying people’s suffering. This perspective affirms the need for respect for the autonomy and dignity of research participants. Ethical considerations might be reflected upon by asking questions, such as the following: • Why were these particular individuals, groups, or communities selected for the research project? • Have all risks to these research participants been considered in relation to the research? • What impact will the research respondents’ participation have on their lives, wellbeing, health, group status, and so on? • Could a different, less traumatized, excluded, silenced group of research participants be selected (to achieve similar results)? • Gatekeepers grant access: How do they select and recruit research participants on behalf of the researcher? • Coresearchers from the research population: Who can be considered representative of the group to be involved in research? What safeguards are in place to prevent stereotyping? How will ownership and authorship of research be distributed?

3.4

Doing: Research Encounters

It is in the actual act of research in the strict sense, in the course of data collection, and in the actual encounter with the research respondents that the ethics of research are embodied and the integrity of the researcher is demonstrated. Many “ethically important moments” (Guillemin and Gillam 2004) may occur in the phase of conducting the research study. Not all of these may be dilemmas in the strict sense, but that does not mean they should not be considered (Guillemin and Gillam 2004). In interviews, for example, individuals might unexpectedly disclose experiences of abuse or a recently received diagnosis of a terminal illness; they might reveal a vulnerability or simply feel great discomfort in answering a particular question and so forth. Such instances require a response, often a pause in the interview. What constitutes these dilemmas or situations is that decisions have to be made on the spot, immediately – there is often no time for a reflexive process or ethical reflection. Much of qualitative research depends on whether the researcher has been able to establish and maintain an effective relationship with the research participant. Furthermore, research encounters are unpredictable, so skill, experience, sensitivity, and reflexivity are key elements in the effort to respond ethically to situations that arise,

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manage expectations, and negotiate role boundaries. Williamson et al. (2020) note that no studies has been conducted examining the frequency of negative consequences of participation in moral violation studies. In relation to these studies, they also note that training is needed for the researcher or research team working with research participants who have been exposed to trauma, and that researchers need clear support and supervision throughout the study (Williamson et al. 2020). Further, some experts in gender would argue that it is necessary that the gender of the researcher and the research participant match; it has been argued that disability research with research respondents who have a disability should be conducted by researchers who have a disability, Indigenous research should be conducted by individuals with matching ethnicity, and so on. The issue of a cultural insider/outsider in research has received much attention in recent years, and the literature suggests that researchers who are cultural insiders have better access in their community, better insights (Liamputtong 2010; Suwankhing and Liamputtong 2015), and may be able to conduct research “in a more sensitive and responsive manner” than researchers who are outsiders (Bishop 2008; Suwankhing and Liamputtong 2015), as well as more quickly and successfully gain trust and build and maintain closer relationships with the community in question or its members (Suwankhing and Liamputtong 2015). However, being an insider can also mean taking things for granted, while being an outsider can bring about a deeper, closer look at the issues being researched as they have fewer assumptions and prior knowledge (Suwankhing and Liamputtong 2015), just as research participants may feel they have to provide more detailed explanations to the “outsider.” Too much closeness in the case of insider researchers requires a number of ethical considerations, for example, to reflect on possible bias and preconceived assumptions; too much distance in the case of outsider researchers needs to be reflected upon, e.g., because of possible misunderstandings, voyeurism, and exploitation. The relationship between researcher and research participant during a research encounter also raises a number of other considerations. For example, confidentiality may be a straightforward ethical requirement, but sometimes there are instances where it may be ethical to break confidentiality, such as when abuse, injury, or harm is observed. Trustworthiness is another value that clearly needs to be upheld, not only because of the immediate relationship, but also because of the general trust in research and scientific discovery. Recognition and management of power relationships between the researcher and the research participant is another constant when considering research from an ethical perspective; it is within this framework that also ownership over the respondent’s narrative is negotiated. Furthermore, practical issues, such as where, how, when, in what time, the research encounter is started, and especially how it is ended, also have ethical implications: It is ethically relevant how the researcher exits the encounter, what is the participant left with, and how they feel at the end of our encounter and after it. Honesty and clarity about the research aims, purpose, approach, and researcher’s point of view are necessary not only to maintain the value of informed consent, but also for research participants to develop realistic expectations and for these to be addressed, managed, and responded to appropriately.

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Ethical considerations might be reflected upon by asking questions, such as the following: • How well has the researcher prepared for what they will ask and how they will ask, and how they will present the research, themselves, their attitude(s), and their positionality toward those under study? • How will the relationship between researcher and participant be established, and how will the researcher determine if the participant feels respected, informed, and so on? • How will the following elements be dealt with: Time, privacy, information sharing, emotions, and power relationships? • How will unwanted discoveries be handled? • What is considered private data? How is it ensured that identities are not linked to private data? • How are expectations on the part of the participant identified and managed (e.g., expectations about the benefits of the research or expectations about the relationship between the researcher and respondent)? • How is the encounter concluded? What is left for the participant after the encounter?

3.5

Understanding: Research Analysis/Interpretation

The researcher actively constructs interpretations; they do not merely report facts; the meanings are not actually found, but created through the process of data analysis. There is general agreement that no analysis and reporting of data is value free or free of prior assumptions, contextual circumstances, and so on. Detecting, managing, and avoiding bias is, therefore, a necessary approach from both an epistemic and ethical perspective. Issues of rigor (such as credibility, confirmability) and other criteria found in qualitative research are critical to the quality and scientific value of a research project, and these should not be compromised. In conjunction with ethical considerations associated with values such as respect, dignity, and the principle of nonharm and relationships, these can also lead to poignant dilemmas at the data analysis stage. Methods for maintaining rigor, such as member checking (research participants check results), peer debriefing (independent expert codes/categorizes data), audit trail (all steps of data collection and coding process are clearly outlined), reflexivity (critical analysis and documentation of researcher biases and assumptions, throughout the process) (McBrien 2008; Liamputtong 2020), are also relevant to ethical aspects of research. For example, research participants may be offended by how their narrative (or thus they themselves) is represented by the research findings, and in order to do them justice in the analysis of the data, it is necessary that the interpretation is firmly and fully grounded in the data (which is systematically and comprehensively addressed in the analysis) and that the process of analysis is transparently presented. Further, rigorous and theoretically apt analysis does not preclude treating

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the data with dignity and care and maintaining a respectful tone in reporting subjects’ narratives. Chase (2005) illustrates that for narrative inquiry, two main positions are recognized (and implemented on the spectrum in between): When researchers aim to “give voice” to participants, they use a “supportive voice”; when they structure narratives according to a particular conceptual framework, they use an “authoritative voice” (Chase 2005). In the first case, the dilemma might arise as to how faithful the account is to the subject’s narrative; in the second case, researchers might be concerned that subjects might feel misinterpreted or betrayed. Having the power to interpret and then write and disseminate other people’s accounts embodies a privileged position in comparison to the researched. Thus, many researchers using feminist methods, for example, aim to reduce the power imbalance and promote an ethic of representation, others ask the researched to redact or (dis)approve data and even interpretations that concern them, and controversial material can be omitted or disagreements about material can be included in reports, while these can be written to include multiple voices and commentators – researchers, researched, and other stakeholders (cf. Preissle and Han 2012). However, sharing one’s narratives and data with research participants is not free from ethical considerations: Kingston (2020), for example, reports that she has shared verbatim transcripts with mothers of children with special needs and that these proved very upsetting for interviewees and made them question their own selves, morals, and abilities. More subtly even, how does the researcher respond when a research subject asks to omit part of the recorded conversation but only mentions the request – that is, it is not mandatory, but does respect for the dignity and autonomy of the person and the relationship outweigh the researcher’s role in recording data? In this context, the consideration of who owns the data could be very relevant. In addition, the ownership and analysis of the narrative also involves the preservation of anonymity and confidentiality. Research-funding agencies now generally require that data be openly accessible for reuse and as a commons, which increasingly includes qualitative data; open access to data could also contribute to the validity, transparency, and reproducibility of research. However, when raw data is available, this also increases the risk of unethical dual use and creates a conflict between the obligation to share data and the protection of confidentiality (Shamoo and Resnik 2015). It is, therefore, imperative that data sharing is done in a responsible, secure, and ethically appropriate manner. Again, reflexivity might be a valid method for questioning the motives, contexts, and approaches to collected data. In this regard, Mauthener and Doucet (2003) suggest practical approaches to reflexivity, which may, for example, consist of designing research involving multiple researchers who can critically exchange ideas, making their epistemological and personal positions transparent, reporting perspectives, values, and beliefs in each research report; a classical work by Lincoln and Guba (1982) introduces writing a reflexive journal which includes a daily log of activities, a log of methodological decisions and changes, and a personal diary in which reflections, including values and interests, are recorded.

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Ethical considerations might be reflected upon by asking questions, such as the following: • • • • •

By what or by whom is the analysis influenced? Who can be involved in the work of analyzing and interpreting the data collected? Will the analysis be conducted with full competence? Who owns the narrative, and whose interpretation of the narrative is (most) valid? How will the data be managed, stored, and protected?

3.6

Reporting: Research Writing

Publishing the results of the research project, whether in a report, journal article, or other format, makes public the research findings, the research process, and (at least partial) information about the research participants. Reporting the research opens it up to broader peer review and critique in terms of research conduct and methods, as well as scientific relevance. Practices in research reporting that conflict with research ethics standards include plagiarism, fabrication, and falsification of data, including exaggeration in claims, speculation in answering research questions, and failure to acknowledge study limitations and odd dates in results. This also includes the more subtle temptation to produce a coherent story, with the danger of overlooking inconsistencies in the data set and/or bending data to fit (Hammersley 2020). All in all, results should be reported accurately and honestly, the discussion should be free of discriminatory or judgmental language, and the work of others should be cited appropriately and accurately. The form of reporting is also important, and Glesne suggests that “it depends on the inclination of the presenter, the nature of the data, the intended purpose for writing up one’s research, and the intended audience” (cited in Liamputtong 2007, p. 184). There are a number of ways in which researchers can report their findings, and these do not have to be (nor should they always be) only in the form of academic writing published in journals or publications accessible only to academic colleagues. In discussing sensitive research (with vulnerable populations), Liamputtong (2007) introduces other creative and performative ways of presenting research data, such as through autoethnography, short story and fiction, performances and staged plays, storytelling and public performance, performance ethnography, ethnodrama, and poetic performance, to (re)present the voices of research participants. These formats can both bridge the gap between researcher and subject, and provide audiences with experiential (possibly emphatic) access to research findings or new knowledge (Liamputtong 2007). This in turn also has ethical aspects, from at least two key perspectives: They may reveal less private information and identifiers, and they may be more accessible and available to wider audiences and lay people, and giving back to communities of research participants. Finally, it is not only a question of how and where or in what form the results should be presented, but sometimes also of the question: Can (or should) there be

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exceptions to the publication of the results? Again, research ethics must be given priority over other interests in reporting results (e.g., funders’ interest, researchers’ career interests, and so on). At least two major dilemmas arise in relation to the implications of reporting. The first relates to how the participating research respondents will feel as a result of the reporting? Will they feel heard or hurt? Will they feel betrayed or understood? Will they feel distressed by reading how they are characterized? Will they feel that they have not been fully informed about the aims of the research? A negative reception could not only damage trust in the researcherrespondent relationship, but could also discourage people from working with researchers in the future. The second dilemma is how to (and should) report findings that might harm research participants, the community to which they belong, or other uninvolved persons (for example, will those that share their attributes face difficulties?). Usually or often, research participants will not benefit directly from the research, but they may not be harmed by it. An ethical dilemma arises between honesty and transparency in reporting and possibly protecting, benefiting, and not harming the participants in the first place. Ethical considerations in reporting would also attempt to strike a balance between benefit and nonharm: If the results are potentially harmful, there needs to be a thorough consideration of why they should be published at all, or what measures can be taken to effectively protect research participants or their communities from injurious effects (such as stereotyping, further exclusion or pathologization, denial of benefits, and so on). For example, in a discussion at a workshop on research ethics at European Conference in Social Work Research (Leuven, Belgium 2019), there was the case of a researcher who, after discovering negative results about pupils in a special education facility, decided to refuse to publish the results and first obtain more information and a deeper understanding of the circumstances, context, and reasons for the data that led to such results. Liamputtong (2007, p. 184), in her monograph on researching the vulnerable, claims that “researchers should not underestimate the consequences of our research on the participant and the society. The choices we make about how to write about the participants, about ourselves and about the cultural context of their studies will lead to how these are perceived and reacted to by readers, policy makers and the service providers.” Ethical considerations might be reflected upon by asking questions, such as the following: • Who is considered the target audience of the research report – for whom is the report being written, or to whom is it being presented? • Will the report be shared with the participants? • What will the report include, and what will it omit and for what reasons? • When the report is written, is it clear and understandable, and does it provide clear information about the research topic? • How will confidentiality be maintained or handled in the report (anonymization, pseudonymization, and so on)? • What are the target audiences, and what is the researcher trying to convince them of with the research report?

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• Has sufficient evidence been provided to enable readers to evaluate the findings? • Is the process of data collection transparent, and what special incidents played a role in the interpretation?

3.7

Acting: Research Dissemination and Use

What are the limits of responsibility for ethical conduct in research? Do researchers (in social inclusion research) have a “responsibility” to use their research findings and privileged position (as scientists) to help solve practical problems and improve life situations? Researchers engaged in action research, for example, would be expected to act beyond publication to some extent. But what about other researchers? Given that certain researchers “have the privilege of working with people who are normally silenced by oppressive social structures” (Liamputtong 2007, p. 190), responsibility might extend beyond the delivery of the research report (Sobočan 2010). The question of responsibility to disseminate knowledge is inevitably accompanied by the question of ethical issues concerning the (mis)use of knowledge and the ethical dimensions of advocacy and partiality. Ethical considerations in research should extend to anticipating the implications of the likely outcomes or the chosen topic itself. Researchers should consider the relevance and dissemination of research not only in terms of utility but also in terms of misuse. An example presented by Penders et al. (2020, p. 16) concerns research into smoking habits: This can not only be used to develop strategies to help people quit smoking, but can also be used by tobacco companies to adapt their advertising. Results of social inclusion research, sensitive research, or research with so-called vulnerable populations can also be misused, e.g., to further stigmatize certain groups of people, to politically misuse certain aspects of the results against the community under study, to stop services rather than improve them, and so on. For example, a particular period of heightened antirefugee sentiment and police violence might not be the best time to study people’s strategies to cross borders illegally. In more democratic times, such a study could help understand people’s resilience and develop supportive mechanisms. The implications of becoming an advocate for a group are complex, and advocacy raises many questions and dilemmas. The decision to speak out is never easy or without potential negative consequences. Considerations may include the consequences for the group under study, for the researcher and their institution and/or discipline. More importantly, having the authority to speak on behalf of others would be conceded and have the same vision of desired change as the research participants. Moreover, there still seems to be a gap between those who produce knowledge and those who are expected to use and deploy it. Policy makers are usually looking for answers to the question of “how,” while researchers often provide the answers to “what” and “who.” Nonetheless, social change is not only about changing laws and policies, but also about influencing consciousness and social attitudes in society. Next, researchers cannot control the multitude of variables that facilitate or prevent social change, and the researcher must weigh whether “unanticipated side effects” of

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the research itself or efforts to use it to effect social change are likely to undermine or reinforce the intended goal (Mertens and Ginsberg 2008, p. 500). Finally, there are issues of reciprocity between the researcher and the researched population, and a key question is: How does the researcher’s role as advocate affect their relationship with the researched? Ellis (2007) reports on the impact of her published work on ethnographic research in a fishing village that she “disenchanted” her respondents, making it impossible for her to reenter the community as a researcher. Ethical considerations might be reflected upon by asking questions, such as the following: • What is the researcher’s responsibility in relation to the findings and the individuals, groups, and communities that participated in the research? • What is the role of the researcher in possible transformative change following the findings? • Who will have access to the knowledge produced, who will make decisions about it, and how will they be decided? • How will the researcher participate in and manage the dissemination of the research findings? • Have the risks of misuse or harmful exploitation of the findings been considered, and how will they be managed? • Has the researcher developed strategies for dealing with the risks of misuse, and what are they?

4

Conclusion and Future Directions

Ethical issues undeniably permeate all research, and it is important that questions of ethical practice in research and the ethical foundations of research are addressed along a broad spectrum of issues that includes research processes, methods, and purposes, forms of interpretation, and issues related to the values and ethical decision-making of those who conduct the research. But, is ethical research even possible? And how? It has been suggested that “social research in general needs ethical reconceptualization so that it can examine and challenge social systems, explore egalitarian systems, and construct a nonviolent, revolutionary ethical consciousness” (Lincoln and Cannella 2009, p. 279). Ethical practice means anticipating and responding to ethical dilemmas and allowing for ethical considerations at every stage of the research process. It also means evaluating and developing ethical awareness. It also means having the confidence to discuss dilemmas and uncertainties with colleagues, peers, mentors, and where appropriate, research participants. The quality of the research must be maintained, the role(s) of the researcher must be continually reflected upon, and decisions throughout the research process must be made in consideration of the ethical requirements and feasibility of the research in identifying topics, research questions, choosing appropriate methodology, and so on. Values in research may be in conflict, and sometimes or often, it is

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necessary to design a hierarchy between values to resolve the conflict. Researchers must have the ability to balance between commitments and values that may conflict or compete with each other, which authors consider part of the integrity of the researcher. Research efforts might never be ethically perfect, but they should be ethically sound.

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Ethics and Participatory Health Research

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Barbara C. Groot and Tineke A. Abma

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Ethics in PHR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Ethical Principles and Guidelines in PHR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Everyday Ethical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Ethics Work . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 A Case Study: Ethics Work in a PHR Study in Psychiatric Care . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Future Directions and PHR . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Participatory Health Research (PHR) and related participatory action research approaches share the normative ideals of transformation, social justice, and inclusion. PHR researchers seek, together with people who are involved in an issue, to make a difference and improve local situations. Ethics is at the core of this type of inclusive research. This means not simply “doing ethics” by submitting a proposal to an Ethics Commission Board, but is an integral part of what participatory researchers do. It means practicing research in an inclusive and democratic way and fostering mutual learning and collective action (process), with the aim to bring about social justice and social inclusion (outcome). PHR involves people who are not usually involved in research, which creates daily situations in which ethical issues may arise, such as who decides, who participates, who is excluded, what does it mean to share power equally, or whose knowledge counts. Ethics is, therefore, more than following procedures about B. C. Groot (*) · T. A. Abma Amsterdam UMC, Amsterdam Institute of Public Health, Amsterdam & Leyden Academy on Vitality & Ageing, Leiden, The Netherlands e mail: [email protected]; [email protected]; [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_30

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informed consent and privacy and relates to everyday ethical issues, and relational and moral complexity. This chapter introduces the context of ethics in PHR, ethical guidelines for PHR, and the concept of ethics work in PHR. Ethics work entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethical issues often relate to power differentials, partnership, and collaboration in inclusive research. Reflection on ethics in PHR, in collaboration with those who are subject of the ethical issue, is a pathway towards ethical PHR. Keywords

Ethics · Ethics work · Ethical guidelines · Participatory Health Research (PHR) · Participatory action research (PAR)

1

Introduction

Participatory research in the field of health and well-being involves those whose lives or work are linked to the topic of research throughout the research cycle (Abma et al. 2019a; Wallerstein et al. 2017; Wright and Kongrats 2018). This is also called Participatory Health Research (PHR). The purpose of PHR is the cocreation of knowledge with all whose life or work is at stake to bring about some form of change or action, while the process itself is seen as a continual cycle of action, reflection, and learning. As in all other action research approaches, elements of “democratic participation,” “action,” and “transformation” (Bradbury 2015) are embedded in PHR’s vision. The aim for social justice and social inclusion is at the core of the approach. In this type of research, all team members are considered coresearchers, including people with lived experiences, academic researchers, and professionals in the institutional or community environment in which the study takes place. They all bring different forms of knowledge, expertise, and skills and collaborate in the partnership on an equal basis. Everybody is welcome, and everybody is invited to contribute – whatever their background or (dis)ability. PHR is an approach within the field of participatory action research (PAR) (Bradbury 2015; Reason and Bradbury 2001) that focuses on the specific context of health and well-being. PHR can be seen as a process of producing knowledge that will benefit people who are not usually included in a study. In PHR, people with lived experiences have the right to influence the research, have power in the research process, and have a “voice” in the study. Moreover, they benefit from the research process by learning about themes they think are relevant. PHR includes a focus on creating positive change with and for the people who collaborate in it. The intention of the external researcher is not to change practice, but to facilitates inquiry by and understanding among the people who live or work in the study to improve situations that contribute to “ill-being.” People who participate as coresearchers, including academic researchers and other stakeholders, gain a better understanding of the environments in which they live and work and their lived experiences, and are thereby enabled to take collective action to improve these conditions.

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In the process of PHR, respect and democratic collaboration are important values (ICPHR 2013). PHR researchers often invest considerable time in creating communicative spaces (Kemmis 2008). These are spaces with a “good vibe,” in which openness and respect are central values and a prerequisite for engagement in the meaningful critical dialogical processes central to PHR (Abma et al. 2019). However, in society in general and the field of health and well-being specifically, certain groups of people are not always treated respectfully and that the knowledge of service users or patients is often silenced (Carel and Kidd 2014; Woelders 2020). Also in PHR work researchers could encounter such situations, for example that a researcher was warned in a research project with people with psychiatric vulnerabilities that they might become psychotic if she involved them in her research (Abma 1998). Also, some funding officiers cannot imagine how it would be possible to collaborate at a policy level with mothers with a low socio-economic status and poor literacy. They see this “target group” as a low IQ cohort, who would be incapable of discussing policy-related issues (Groot and Abma 2020). These are typically situations in which people are silenced and in which unequal power leads to “epistemic injustice,” a concept defined by Miranda Fricker (2009, 2013). Epistemic injustice concerns a situation in which people are wronged in their capacity as knowers. Some people are seen more or less as noncredible knowers because of a negative identity and prejudicial stereotypes, especially in psychiatric care (Crichton et al. 2017) or, for example, jobless people requiring social services (Groot et al. 2020a), mothers living in poverty (Groot and Abma 2020) and older people (Bendien et al. 2020). In PHR, epistemic justice is a core principle in the research process (Brannelly 2018). Epistemic justice here could refer to situations in which coresearchers feel that their capacity as knowers is undervalued and that their stories are not deemed worth listening to by other (academic) coresearchers. These situations could, for example, evolve because academics work according to system guidelines or need to meet tight deadlines. It could also be that coresearchers feel wronged in their capacity as knowers in dialogue sessions with professionals and academic researchers (testimonial injus tice). Also, the written academic culture could result in a situation in which not everyone is possessed with resources necessary to exchange and interpret their experiences, such as if coresearchers are illiterate or have symptoms of dyslexia (hermeneutic injustice) (Fricker 2013). Countering epistemic injustice implies that the participatory researchers have to stand up for what they do. But researchers are also not always able to remain neutral in order to create a space and include people whose voices would otherwise be marginalized. This is typically “ethics work” (Banks 2016). The rest of this chapter will focus on this ethics work. The chapter starts by outlining the context of ethics in PHR, ethical guidelines for PHR, and the concept of ethics work in PHR. Ethics work entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethical issues often relate to power differentials, partnership, and collaboration in inclusive research. Reflection on ethics in PHR, collaborating with those who are the subject of the ethical issue, is a pathway for ethical PHR.

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Ethics in PHR

In the field of participatory action research (PAR), in which researchers come from diverse disciplinary backgrounds and histories, many definitions of action research refer to ethics. Different scholars define this type of research approach as “a form of morally committed action,” a “participatory, democratic process,” or an “enactment of a commitment to democratic social transformation through social research” (Brydon-Miller 2008, p. 199). PHR researchers strive for social justice and social inclusion rather than focusing on descriptions or explanations. In addition, in PHR, the research engages people who are generally not included in all stages of a research project. It involves people focusing on changing their situations (Banks and BrydonMiller 2019; ICPHR 2013). Therefore, ethics applies at the start of a study but is also essential throughout the research cycle (Abma et al. 2019b). Although PHR is of an ethical nature, this does not imply that it is exempt from thoughtful examination of the moral virtues and implications of the research. In PHR, there are ethical issues at the everyday level, because a PHR researcher works together with different people with different ideas, vulnerabilities and privileges, and different strengths. So, ethics is not just about informed consent or privacy rules, or filling in the ethics board form. Preparing and submitting a proposal to an ethics review board is important, not least because of needing to think through issues concerning privacy, confidentiality, and anonymity. However, the traditional understanding of ethics in academia and medical universities are often one-sided and based on principles, such as those of the Helsinki Declaration and the Belmont Report. These are focused on protecting the individual research objects and focusing on a study that is led and conducted by an expert researcher, while PHR entails a mixed and inclusive group of coresearchers. Concepts such as shared ownership, different stakeholders having a voice in the study, and social justice are not congruent with the traditional approach to ethical principles. For example, as Brydon-Miller (2008, p. 202) describes, the value of “respect” has a different meaning and interpretation in PHR than in (positivist) medical research: Respect for persons, for example, under the guidelines of the Belmont Report and most sets of human subjects research guidelines, is limited to providing research subjects with the opportunity to decline to participate in a particular study and is assumed to be addressed through the informed consent process. In action research, on the other hand, this principle extends to our conviction that all individuals have the capacity to contribute to the process of knowledge generation and the right to play an active role in shaping policies and processes that affect their own well being and that of their families and communities.

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Ethical Principles and Guidelines in PHR

Values such as “respect” have different interpretations in relation to the basic assumptions of democratic participation and epistemic justice. To respond to this complexity for Ethical Commission Boards (ECBs, in some countries called Institutional Review Boards or Research Ethics Committees), members of the ICPHR

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Table 1 Ethical principles for PHR (ICPHR 2013) Principle Mutual respect Equality and inclusion Democratic participation Active learning Making a difference Collective action Personal integrity

Short description Developing research relationships based on mutual respect Encouraging and enabling people from a range of backgrounds and identities (e.g. ethnicity, faith, class, education, gender, sexual orientation, (dis)ability, age) to lead, design, and take part in the research Encouraging and enabling all participants to contribute meaningfully to decision making and other aspects of the research process according to skills, interests, and collective needs Seeing research collaboration and the process of research as providing opportunities to learn from each other Promoting research that creates positive change for communities of place, interest, or identity Individuals and groups working together to achieve change Participants behaving reliably, honestly, and in a transparent and trustworthy fashion

(2013) created a set of ethical principles for participatory researchers (Table 1). These principles are based on the work of Sarah Banks and colleagues (Banks et al. 2013; CSJCA 2015). The principles can help to deal with the institutional regulations and the ethical nature of PHR and also provide guidance for researchers, partners, participants, research institutions, research funders, and sponsors to benchmark decisions or actions and highlight unjustified differences in treatment based on favoritism, prejudice, oppressive use of power, or unfair legal, social and cultural laws, customs, and norms (Banks and Brydon-Miller 2019). Discussing guidelines and principles can also be invaluable for getting to know each other better (Abma et al. 2019). For example, by examining the principles in a group or team, potential dilemmas that arise can be explored in the group. The ICPHR (2013) ethical principles go beyond the widespread traditional principles in research ethics, such as the potential harm or benefit of research, the rights of participants to information, privacy, anonymity, and the responsibilities of researchers to act with integrity and honesty. The ICPHR principles deal with the nature of PHR and are more related to considerations of inclusivity and democracy in the research process and the promotion of well-being and social justice in society. The principles can be used at the start of a PHR study or as a framework to make decisions throughout the study (see Table 1).

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Everyday Ethical Issues

Ethical issues in PHR are often unpredictable and contextual. A literature review and scoping study on ethics in CBPR (CSJCA 2015) identified some of the significant ethical issues in participatory research such as “partnership, collaboration, and power,” “blurring the boundaries between researcher and researched,” “community rights, conflict, and democratic representation,” “coownership,” “anonymity,

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privacy, and confidentiality,” and “institutional ethical review processes.” In a recent volume edited by Banks and Brydon-Miller (2019), these ethical issues were further explored by a group of scholars who reflected on case stories from around the globe. One of these dealt with the issue of coownership and how sharing ownership between an academic researcher and a coresearcher with intellectual disabilities can create tensions. The story helps to understand the type of ethical problems a participatory researcher may confront: The case was brought in by Gustaaf Bos, who worked on a research project that was evaluating a programme for developing experiential knowledge with people with intellectual disabilities. In this study he worked with a young, vibrant, clever woman with an intellectual disability, Rafaella van den Bosch, who is mother to three children. As a co researcher she completed participant observations, and Gustaaf asked her to write down her observations. Soon he recognized that Rafaella felt very insecure about her writing abilities, and asked Gustaaf to correct what she called ‘my grammatical errors and the other mistakes I made’. The dilemma Gustaaf experienced was: should I correct her faults or not? The values of respecting her ownership (her wish to own and correct her text) clashed with the value of authenticity (she is a unique person and we need to honour her selfhood). The dilemma raises the question whether or not each co researcher should learn and do what a regular researcher does (making field notes). When does inclusion become disempowering? (Bos & Van den Bosch, cited in Banks and Brydon Miller 2019, pp. 122 124).

The dilemma sketched above is one that traditional ethical review boards do not anticipate. Their concerns are often focused on issues like privacy, anonymity, or confidentiality, so the standards and protocols of ethics in institutions like (medical) universities do not match the issues listed in the above example. In institutions, ECBs traditionally use biomedical and positivist standards in navigating a review and giving approval (Guillemin and Gillam 2004). While participatory research is not new, the criteria used for ethical review are very slow to adapt to its emergent and participatory nature (Fouché and Chubb 2017). Concepts fundamental to PHR, such as coownership, collaboration, and shared decision-making, do not fit with the traditional approach. There is a less clear distinction between researchers and subjects of research in PHR than in conventional research, and the relational and flexible nature of participatory studies is often surprising to ECBs (Guta 2019). The ECBs are focused on protecting individuals, while PHR focuses on the active participation of individuals and their interaction with communities and groups. These various and sometimes conflicting ideas about what “ethical research” entails can be a struggle for participatory researchers within their academic institution. To deal with such issues, the ethical principles developed by the ICPHR (2013) offer guidance. Another way to deal with them is to read and discuss particular cases and develop one’s moral sensitivity. To illustrate this, we further continue with a case example to illustrate what is ethically salient in participatory research and what participatory researchers might do to realize the ethical potential of their work.

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Ethics Work

Working in PHR in an ethically sound way demands work on the part of the participatory researcher, who often acts as a facilitator of the dialogue and collaboration among the people involved. Ethics work very much needs to be done, but is often invisible. The work relates to creating partnerships, dealing with emotions, working with frames, and so on. Most of this work is not written up in a research plan or planned in a research project schedule. Often, it is not budgeted for, making it an “extra” task of a researcher’s job. However, without all this invisible work, inclusive research is a hollow claim. Participatory research is much more than a technical endeavor and applying the right methods and techniques. It has a normative side, which can easily be overlooked or reduced to ticking a box in another checklist. For this reason, this chapter introduces the notion of “ethics work” developed by Sarah Banks in the context of social work (Banks 2016) and translates this concept to the field of participatory research (Abma 2020; Groot 2021). Ethics work is a concept that focuses on the embeddedness of ethical issues in daily practice. It describes the ethical responsibilities and accompanying work, such as creating an ethical approach in PHR. In the field of social work, Banks (2016, p. 36) describes the concept as follows: I am using the term ‘ethics work’ to refer to the effort people (in this case professionals) put into seeing ethically salient aspects of situations, developing themselves as good practi tioners, working out the right course of action and justifying who they are and what they have done. Broadly speaking, ‘ethics’ relates to matters of harm and benefit, rights and responsibilities and good and bad qualities of character. I am using the term ‘work’ in this context to cover the psychological and bodily processes of noticing, attending, thinking, interacting and performing.

According to Banks (2016), ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. Abma (2020) suggests that ethics work and these features are embedded in the everyday practice of participatory action research. To illustrate everyday ethical issues in PHR and the concept of ethics work, a case example of a PHR study is presented below. The case is presented in parts, in which different features of ethics work are shown and then discussed. Ethics work is often subtle, and so does not always feel like work. We associate work with the production of tangible goods, with a beginning and an end. Ethics work is more akin to care; caring work is always going on and never finished, as it is needed to keep us alive (Fisher and Tronto 1990). Moreover, ethics work is not always conducted because researchers are not always sensitive to or aware of the ethical issues arising from PHR. So, ethics work is related to the development of moral virtues, such as attentiveness, responsibility, competence, responsiveness, and solidarity (Tronto 2013). Finally, ethics work is typically collaborative (Groot 2021) and demands that a group of people to “work” ethically together in an inclusive way. We now illustrate this with an example.

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A Case Study: Ethics Work in a PHR Study in Psychiatric Care

This example is based in the Netherlands, in the context of a learning platform on the participation of patients or clients in health care and welfare. We set up this platform with a local client advocacy organization, because organizations and professionals have to involve and include clients in their decision-making processes but often do not know to do this appropriately. The platform engages clients and professionals to learn with and from each other and is called the Centre of Client Experiences (CvC) (Centrum voor Cliëntervaringen 2020). Partners come from different settings in the field of health care and well-being, including health providers, municipalities, research funding or charitable organizations and (applied) universities. Above all, a group of people with lived experiences were full partners in the CvC from the moment it was established. These people have daily experiences of living in vulnerable situations and were eager to make a difference for themselves and others in a similar situation. From this platform, we conducted a PHR study in emergency psychiatric care (Groot et al. 2019b), with several substudies in which we reflected on ethical issues (Groot et al. 2019a, 2020b). The story and some photographs of the case example includes sections from Groot et al. (2020b). “Did you ask the clients?” The question was posed by the former Director of the client advocacy organization in Amsterdam. It was a simple question but one that led to a long, uncomfortable silence in the room full of representatives gathered in the Town Hall. They were discussing the quality of emergency psychiatric care in the city. All of them saw the introduction of Psycholance, part of a new emergency psychiatric care model, as an important step, and this was confirmed by an internal evaluation study commissioned by two mental health institutions in the city and completed by researchers at these institutions. Yet this study did not include the perspectives of the users. This was an eye opener for the two CEOs of these institutions. The question alerted them to the missing voices of the people they aimed to serve. Role work The director of the client advocacy organization in Amsterdam, and cofounder of the CvC, could be seen as one of our coresearchers, who works in a strategic position. In this part of the story, he practices role work. The director deliberately takes on the role of an advocate. He takes a position on the voice that is the least heard and uses his position and power to raise interest in people who are socially marginalized. He does so in a diplomatic way, simply asking the question: “Did you ask the clients?” If he was not in that room taking on the advocacy role, the question was not asked and the clients’ voice remained hidden and unheard. Although he did not feel “formally” that he was an advocate, he behaved as one and, in his strategic position, played a vital ethical role as a starting point of a PHR study to make a difference. Subsequently, we received the invitation from the two CEOs to set up an evaluation of the emergency care from the clients’ perspective to complement the internal evaluation. This led to collaborations with four experts by experience to develop a research proposal to genuinely honor their voices throughout the whole process. So, we Barbara as a PhD student and Tineke as professor invested in building a solid mixed team consisting of

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researchers with and without experiential knowledge. Three of the coresearchers had been clients in the past and one had a family member who was a client.

Relationship work In this study, building a mixed research team concerned relationship work. Working together in a team with mixed backgrounds, lived experiences, and working conditions (voluntary or paid) requires relationship work to engage everybody in an inclu sive way. Frequently meeting in person, paying attention to power differentials and safety issues and working creatively together, was work that was not in the proposal but crucial to keep everyone on board. The use of arts based methods to express feelings and share them to make sense of each other’s experiences was essential in this relationship work. In this study, as in many other participatory projects, it was important to get to know each other personally. In the first meetings, differences between researchers were explored, and there was an exchange about who had or had not experienced trauma. The expectations were discussed. All these actions were necessary and along the way this relationship work continued to (re) negotiate and “manage” mutual dynamics (Groot et al. 2019a). Below we illustrate how we used creative methods to get to know each other and share experiences of crises and trauma.

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We wrote a research proposal and submitted this to the academic board and the ECB of the academic hospital in which we work. Their first reactions were not positive. They did not understand the PHR approach and expressed doubts. First of all, the board stipulated that people who have lived experiences in crisis could experience stress and harm as a result of the study; interviews may trigger memories and revive the trauma. Second, working together as researchers in close collaboration with people who have lived experiences in emergency psychiatric care was also considered a risk. Finally, they had questions about the informed consent of images we intended to collect from clients, using arts based methods. Using arts based methods is not usual in this medical university and raised ethical issues regarding privacy of photographs and other images such as drawings. Overall, we needed to convince the boards that we would work in an ethically responsible manner, perhaps even more than studies that exclude people with lived experiences in the research team. We used, among others, the ethical principles of participatory research (ICPHR 2013) to show that this research approach is an academic field with special attention to ethics. Ethics is the heart of the approach: “nothing about us, without us!” Identity work In traditional research institutions, there is work to do in order to create an identity as an ethically good professional. What is an ethically good professional? From the perspective of the ethics of care, values as caring and relationships are important, while from a more traditional ethical model, logic and reason are more important virtues (Tronto 2013). Thus, in relation to a more traditional ECBs, it is necessary to negotiate your professional ethical identity: how are you as a researcher going to meet their standards and criteria, and work in an inclusive way, maintaining professional integrity? Often, inclusive research is not “standard” in (medical) academic fields, so researchers have to show that they work on their ethical self and are qualified as “good” researchers in relation to people who live in vulnerable situations in conducting inclusive research. Attention to virtues related to rela tional and care ethics as well as referring to the ethical principles in PHR is important to convince the members of these boards. If possible, an oral presentation and conversation can help understanding. We all experienced the first 9 months of the research process as fruitful. We collaborated in the development of the design, and all strategic decisions, and worked together in the process of data generation and interpretation. This included deliberations on who to include and how to involve all of us as coresearchers in the evaluation study; what we expected from the study as well as the changes and improvements we wanted to generate in practice; who

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benefitted from the current situation or experienced negative consequences; what the underlying mechanisms were; and who we wanted to inform and engage about our research findings.

Emotion work Contexts and subject of studies can be loaded with emotions of all involved. In this study, the context and subject emergency psychiatric care was associated with mainly negative emotions related to periods of crisis. All coresearchers were highly involved and the period of this study was for everyone a period of emotional labor, not only the coresearchers with lived experiences, but for all of us. Emotion work consisted of the collaboration in the team and the responsibility everyone felt to care for each other’s well being. Initially, one of us felt the moral responsibility and was compassionate and empathic towards the coresearchers with lived experiences. Dealing with the emotions of everyone involved felt like a heavy responsibility. Later in the process, it became much more a mutual responsibility whereby all team members cared for each other (Groot et al. 2019a). After 7 months, we were approaching the submission deadline of the report and a pre planned dialogue meeting with all stakeholders: professionals in emergency psychiatric care, police officers, ambulance staff, experts through experience, users, and family mem bers. One week to go. As a research team, we felt the need for a full, clear report including a conclusion, and it was important to send the full report to all those invited to the dialogue session. However, only the “findings” were discussed collaboratively in the team at that time; the conclusion was not. One of us had taken the lead in writing the conclusions on the grounds of efficiency given the time pressure, and the whole team had not had the chance to discuss them. All team members felt the pressure to perform and find the right words in view of the political and strategic implications.

Framing work All members of the research team were eager to make a difference with this study. They wanted to coconstruct frames about clients’ experiences of emergency psychi atric care. Coresearchers perceived that professionals did not have the full picture of these experiences. In writing a report, different frames could be used. Coresearchers with lived experiences wanted to frame the conclusion in a particular way to make clear the harmful behavior and routines of professionals. They assumed that such a description would increase the sense of urgency and lead to improvements in the emergency care. But the academic researchers were more aware of the background context that shaped the emergency care, and wanted to focus on the harm resulting from system failures and austerity measures. It was a challenging task to frame the message in a “good” way conforming to the ideas and analysis of all coresearchers (not only the academic ones). In retrospect, we can see how this framing work came up when there was hardly any time to discuss the various frames. We recommend starting such framing work much earlier on, to invest in understanding the various ways a situation can be framed, also depending on one’s role and position, and respectfully and strategically discuss which frames are helpful to change a practice.

Role work Another aspect of ethics work arises in this case, because in the writing phase people’s different roles became more visible. In the research team, different coresearchers also had different positions, for example, an academic coresearcher who also had lived experiences in emergency psychiatric care, experiences as professionals in psychiatric care, and sometimes also a formal position in the clients’ advocacy organization. These different positions bring different frames and expectations. How one writes, the words and discourse adopted, and the aims to make a message clear, differs depending on the various roles and

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positions. Being clear about frames and positions can be a challenge. Role work consists, for example, sometimes of deliberately taking a partial, advocacy position to voice what is least heard, and sometimes adopting an impartial position in order to be perceived as an academic. Reflecting on these positions and roles and their implications can also be seen as role work, and there is work to be done to elaborate and have a dialogue about this in an inclusive research process. One team member with experiential knowledge informally expressed her discontent to one of the team members about this acceleration. This led us to organize a phone call with the whole research team: “I see that a few sentences are written by someone who could not empathize with the position of the service user. I feel dispossessed. This is not the conclusion I would draw from this research. Who owns the final version? Who decides? Who has the power to decide the content of this most read, and important, part of the report [the conclusion]?”

Reason work The coresearcher’s question is an important one in an inclusive participatory research project. Who determines and owns the work refers to principles of coownership, collaboration, and power sharing. In an idealistic world, all coresearchers share the owner ship of a final version and coresearchers decide collaboratively. A power hierarchy should be out of the question. However, in PHR, there are always power differentials between people who are included. That a coresearcher asks questions about power is very valuable. It is an indication that the coresearcher feels safe enough to do so and enable a collaborative reflection could take place. However, this can only happen if the academic researchers want to create room for such a conversation. It can be an uncomfortable confrontation with one person’s privilege and another’s disadvantage, and it requires a willingness to reflect on one’s behavior and acknowledge that the previous approach was not the only and “good” approach. Without listening, reflection and action, the coresearcher might have left the building and the process. Reflecting collaboratively on a question with those who are involved can be seen as reason work. It concerns working out strategies in deliberation with others for ethical action. It is not always possible to reflect collaboratively. A prereq uisite is a safe space for all, also called a “communicative space” (Kemmis 2008). This is a space with a “good vibe,” in which openness and respect are central values. Without a communicative space, engagement in a meaningful critical dialogical process often is not possible (Abma et al. 2019). In this telephone call, another expert with lived experience mentioned her dyslexia, which she felt excluded her from the writing process. She was dependent giving verbal feedback on the report. We knew this, but in the rush to get the report finished we did not create time to talk with her about the conclusions. She argued: “I could not make it clear . . . My arguments were not understood and I could not write them down like the others. Others gained more influence on paper. Parts of my knowledge have been lost because I speak and do not write accurately. So, some users are. . . but not all are heard, or understood.” We acknowledged these arguments and took them seriously by arranging extra time to rewrite the conclusions. We also arranged another meeting to prepare carefully for the meeting ahead of us. The coresearchers made it very clear that this meeting was very stressful for them, because they would encounter professionals and be reminded of the traumatic experiences they had gone through when they had been admitted to the emergency ward. They expressed the need for a safe space, otherwise they would not be able to attend the meeting. This led to a discussion about what a safe space meant to them, and what they needed to feel safe. It resulted in the decision to start the meeting with music and a poem chosen by the coresearchers, which was a way to comfort them and share their inner feelings. Starting the dialogue with their music was also symbolic; we literally started with their voices. This preparation restored the trust

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within our team. As academic researchers, this incident made us very aware of our power to create possibilities for involvement and to determine the process.

Emotion and relationship work The meetings and preparations before the dialogue session could be seen as emotion and relationship work. The academic researchers tried to be caring and empathic towards the coresearchers with lived experiences and their position and feelings. They built trust by responding to their emotions (emotion work). In the preparation, they found ways to engage in dialogue and came up with creative solutions to create a safe space for the coresearchers. The music and poem were ways to connect with others involved. The dialogue meeting itself was intense, because the perspectives of clients and profes sionals clearly differed, such as on the issue of restrictions on their freedom. It was at this point that the dialogue about the value of clients’ voices really started, because their perspectives and those of the professionals came together. Several months later, we discovered that the report was not what the two commissioning bodies had expected. Clearly, the clients had perspectives on the emergency care in the city that differed from those of most of the professionals. Although some professionals and managers embraced the report and its findings, others regarded it as “just” a qualitative study, a methodology that did not need to be taken too seriously. They also questioned the witnesses’ stories, and what they thought of as merely “subjective” opinions. Framing work The frames of some professionals and managers of what constitutes “knowledge” and “evidence” and what counts as knowledge were different. But who determines what a legitimate knower is? Patients were seen as subjective, emotional, and only looking to their own interests. The frame of the patient is one of not being competent to ask questions or to produce knowledge. The frame is that a patient is a lay person, not a coresearcher with knowledge. Expertise belongs to experts. As the concept “epistemic injustice” (Fricker 2009, 2013) describes, not all knowledge is seen as valuable by everyone. Coconstructing the frames of people involved in change processes was part of the work done by participatory researchers. In medical contexts that use positivist research paradigms, quantitative data is more valuable than qualitative data. Moreover, clients or service users are seen as people with less knowledge than professionals or academic knowledge (Crichton et al. 2017). However, re constructing frames is not a job that can be done overnight, since these are developed over many years and are relatively stable. This takes a change process of years in which features of structural mechanisms of marginalization need to be addressed. Being aware of the different frames of people involved helps to introduce “new” frames and make people aware of their own frame (Abma et al. 2019). The visual images, collages, and drawings the clients made as part of the study were also found to be too provocative. We had carefully and deliberately added these images because they expressed the clients’ or service users’ feelings more effectively than words (see Images). Yet, we were asked to delete them and to give the report a more positive and neutral tone before disseminating it to the public. All team members had misgivings about this request, and we decided to talk with the commissioners to better understand the reasons behind it. We learned that the CEOs were afraid of the sanctions that external inspectors may apply when they read about clients’ experiences. These negotiations took a lot of time and one expert with lived experience ultimately decided to leave the project because she did not want to take responsibility for the report.

In sum, in this case we see different types of ethics work during a process of a PHR study (see Table 2).

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Table 2 Features of ethics work (Banks 2016) reframed for PHR and participation in general Feature Framing work

Role work

Emotion work

Identity work

Reason work

Relationship work Performance work

Translation to ethical PHR practice Being attentive to salient features of a situation and political listening (and viewing) Linking these features with structural mechanisms of marginalization Engaging in deliberations about these frames with coresearchers and other stakeholders and cocreate “new” frames Playing a role in relation to others (researcher and researched, academic, and activist) and negotiating these roles Taking a position: sometimes being partial to the voice that is the least heard, sometimes being impartial to be perceived as an academic Being caring, compassionate, and empathic Building communicative spaces Seeing responsibilities of all involved in responding to emotions of others Working to see that people see and experience a caring ethical participatory researcher, for example towards the ECB, funds, or colleagues Deliberation about the ethos of a PHR researcher Making decisions and justifying one’s decisions in ethically salient situations Conducting ethical reflections (individually and collaboratively) with those involved in the issue Engaging in dialogue with others Working on relationships through arts based approaches, including representational knowledge Making visible aspects of this work to others Demonstrating oneself at work (accountability work)

The above case, and the analysis of the ethics work in this case, shows the relevance of collaborative reflection on ethics in PHR. It is not only the academic or the coresearcher who needs to reflect or deal with ethical challenges. It is a team arrangement to deal with ethical issues and to collaboratively reflect on these everyday ethical issues. This is only possible, as can be seen in the case story, if there is a communicative space, in which people feel welcome and safe to learn together.

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Conclusion and Future Directions

Participatory health research is much more than a technical endeavor and applying the right methods and techniques. It has an ethical and normative side, which can easily be overlooked or reduced to ticking a box in another checklist. To prevent such a “thinning” of ethics, this chapter has introduced the notion of “ethics work” in PHR (Abma 2020). Ethics work in PHR “thickens” and is part of all what participatory researchers do and applies to the entire process. The ethical issues in PHR often occur on a daily basis and relate to issues like power, control, collaboration, and coownership. Developing ethical sensitivity is not something that can be learned from books, it is typically learned in a master–apprentice relationship. Like an artisan, one learns over the years, from many cases, in close contact with the material

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and tangible reality of PHR, what it means to do it well. This is certainly no simple task or responsibility. As Richard Sennett (2008, p. 9) points out, an artisan “often faces conflicting objective standards of excellence; the desires to do something well for its own sake can be impaired by competitive pressure, by frustration, or by obsession.” Albeit not simple, it is also emotionally rewarding to do PHR and develop pride in becoming a good PHR artisan.

8

Future Directions and PHR

There are three future directions for ethics in PHR. First of all, the role of Ethics Commission Boards (EBC’s) could be strengthened. Most EBCs, especially in medical institutions, use core principles based on the medical model. Education to members of EBCs, for example, about the value of “Social Inclusion” could help the members review PHR and other action research studies holistically. Secondly, academic researchers working in PHR could discuss ethical cases more often with community partners and coresearchers with lived experiences. Learning collaboratively and bringing different perspectives on an ethical case is helpful and transformative (Groot 2021). Finally, ethics is not a standard subject in methodological education and PHR training in particular. Students and academics who are new to participatory approaches need to learn more about ethical principles and ethics work. Reflection on their roles and responsibilities and ethical cases could strengthen their sensitivity to ethics.

References Abma, T. A. (1998). Storytelling as inquiry in a mental hospital. Qualitative Health Research, 8(6), 821 838. Abma, T. A. (2020). Ethics work for good participatory action research. Beleidsonderzoek Online. https://doi.org/10.5553/BO/221335502020000006001. Abma, T. A., Banks, S., Cook, T., Dias, S., Madson, W., Springett, J., & Wright, M. (2019a). Participatory research for health and social Well being. Cham: Springer Nature. Abma, T. A., Groot, B. C., & Widdershoven, G. (2019b). The ethics of public and service user involvement in health research: The need for participatory reflection on everyday ethical issues. The American Journal of Bioethics, 19(8), 23 25. Banks, S. (2016). Everyday ethics in professional life: Social work as ethics work. Ethics and Social Welfare, 10(1), 35 52. Banks, S., & Brydon Miller, M. (2019). Ethics in participatory research for health and social well being: Cases and commentaries. Abingdon: Routledge. Banks, S., Armstrong, A., Carter, K., Graham, H., Hayward, P., Henry, A., Holland, T., Holmes, C., Lee, A., McNulty, A., Moore, N., Nayling, N., Stokoe, A., & Strachan, A. (2013). Everyday ethics in community based participatory research. Contemporary Social Science, 8(3), 263 277. Bendien, E., Groot, B., & Abma, T. (2020). Circles of impacts within and beyond participatory action research with older people. Ageing and Society, 1 21. https://doi.org/10.1017/ S0144686X20001336. Bradbury, H. (Ed.). (2015). The Sage handbook of action research. London: Sage.

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Brannelly, T. (2018). An ethics of care research manifesto. International Journal of Care and Caring, 2(3), 367 378. Brydon Miller, M. (2008). Ethics and action research: Deepening our commitment to principles of social justice and redefining systems of democratic practice. In P. Reason & H. Bradbury (Eds.), The SAGE handbook of action research: Participative inquiry and practice (Vol. 2, pp. 199 210). New York: SAGE. Carel, H. H., & Kidd, I. J. (2014). Epistemic injustice in healthcare: A philosophical analysis. Medicine, Health Care and Philosophy, 17(4), 529 540. Centrum voor Cliëntervaringen. (2020). Website. http://www.centrumvoorclientervaringen.com. Accessed on 12 Nov 2020. Crichton, P., Carel, H., & Kidd, I. J. (2017). Epistemic injustice in psychiatry. BJPsych Bulletin, 41(2), 65 70. CSJCA (Centre for Social Justice and Community Action). (2015). Dilemmas Cafés: A guide for facilitators. Retrieved from https://ukprn.weebly.com/uploads/5/7/5/1/57517787/dilemmas_ cafes__a_guide_for_facilitators.pdf on 01 Jan 2020. Fisher, B., & Tronto, J. (1990). Toward a feminist theory of caring. Circles of care: Work and identity in women’s lives. In E. K. Abel, M. K. Nelson, & M. K. Nelson (Eds.), Circles of care: Work and identity in women's lives (pp. 35 62). New York: SUNY Press. Fouché, C. B., & Chubb, L. A. (2017). Action researchers encountering ethical review: A literature synthesis on challenges and strategies. Educational Action Research, 25(1), 23 34. Fricker, M. (2009). Epistemic injustice: Power and the ethics of knowing. New York: Oxford University Press. Fricker, M. (2013). Epistemic justice as a condition of political freedom? Synthese, 190(7), 1317 1332. Groot, B. C. (2021). Ethics of Participatory Health Research: reflections on roles and responsibil ities. Insights from a reflective journey. Dissertation, VU University. Groot, B. C., & Abma, T. A. (2020). Participatory Health Research with mothers living in poverty in the Netherlands: Pathways and challenges to strengthen empowerment. FQS / Forum: Quali tative Social Research, 21(1), 8. Groot, B. C., Vink, M., Haveman, A., Huberts, M., Schout, G., & Abma, T. A. (2019a). Ethics of care in participatory health research: Mutual responsibility in collaboration with co researchers. Educational Action Research, 27(2), 286 302. Groot, B., Vink, M., Schout, G., & Abma, T. (2019b). Pathways for improvement of care in psychiatric crisis: A plea for the co creation with service users and ethics of care. Archives Of Psychology, 3(3). Retrieved from https://archivesofpsychology.org/index.php/aop/article/view/99 Groot, B. C., Weerman, A., Overbeek, F., & Abma, T. A. (2020a). Making a difference: Participa tory health research with unemployed citizens and policymakers. International Review of Qualitative Research, 13(2), 200 218. Groot, B., Haveman, A., & Abma, T. (2020b). Relational, ethically sound co production in mental health care research: Epistemic injustice and the need for an ethics of care. Critical Public Health, 1 11. https://doi.org/10.1080/09581596.2020.1770694. Guillemin, M., & Gillam, L. (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry, 10(2), 261 280. Guta, A. (2019). Institutional ethical review processes. In S. Banks & M. Brydon Miller (Eds.), Ethics in participatory research for health and social wellbeing (pp. 179 204). Abingdon: Routledge. ICPHR (International Collaboration for Participatory Health Research). (2013). Position paper 2: Participatory health research: A guide to ethical principals and practice (Version October 2013). Berlin: ICPHR. Kemmis, S. (2008). Critical theory and participatory action research. In P. Reason & H. Bradbury (Eds.), The SAGE handbook of action research: Participative inquiry and practice (Vol. 2, p. xx). New York: SAGE.

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Reason, P., & Bradbury, H. (Eds.). (2001). The SAGE handbook of action research: Participative inquiry and practice (Vol. 2). New York: SAGE. Sennett, R. (2008). The craftsman. Yale: Yale University Press. Tronto, J. C. (2013). Caring democracy: Markets, equality, and justice. New York: New York University Press. Wallerstein, N., Duran, B., Oetzel, J. G., & Minkler, M. (Eds.). (2017). Community based partic ipatory research for health: Advancing social and health equity. Hoboken: Wiley. Woelders, S. (2020). Power full patient participation. Opening spaces for silenced knowledge. Disseration, VU University. Wright, M., & Kongrats, K. (Eds.). (2018). Participatory health research: Voices from around the world. Puducherry: Springer.

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A Practical Guide Catherine Flynn and Cameron Rose

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Understanding Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Research Dissemination and the Translation Gap . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 Benefits of Extensive and Diverse Research Dissemination in Addressing the Translation Gap and Inclusivity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Designing Research Dissemination: Creative Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Distinguishing Design in the Creative Arts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Research Impact Pathway: Using Case Studies to Unpack Impact . . . . . . . . . . . . . . . . . . . 4.1 A Case Study Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Practical Guidance for Designing Research Impact for Social Inclusion . . . . . . . . . . . . . . . . . . 5.1 Integrating the Double Diamond Model with the Research Impact Pathway . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter is based on the key premise that knowledge is power but that knowledge must be accessible. In this discussion, we bring together two currently separate streams of scholarly debate: that focusing on research dissemination and that focusing on fostering social inclusion. While a broad understanding of the concepts of social inclusion and exclusion is now generally recognized, to date there has been little examination of how sharing of research findings, in meaningful and responsive ways, can promote social inclusion. The chapter addresses and is structured around four topics: (1) what is meant by research dissemination/ sharing, and how this relates to processes of social inclusion; (2) the role of C. Flynn (*) Department of Social Work, Monash University, Caulfield East, VIC, Australia e mail: catherine.fl[email protected] C. Rose United Pop Australia Pty Ltd, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_31

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creative – specifically design - processes in sharing research widely and in alternative formats; and (3) five case studies illustrating how research findings can be shared to promote inclusivity, structured around a known Research Impact Pathway. The chapter concludes with (4) a practical guide to designing research impact, synthesizing key learnings that readers can take into their own practice. Keywords

Research dissemination · Social inclusion · Accessibility · Creative sharing · Research impact · Design

1

Introduction

While the concepts of social inclusion and exclusion are now broadly recognized and understood, and a range of government and community-based strategies aim to promote inclusion, to date there has been little examination of how research dissemination, as a specific strategy, can foster inclusivity. Research dissemination has instead traditionally focused on bringing together what Shonkoff (2000) labeled as three disparate cultures, research, policy, and practice, and seeking to overcome the communication barriers between these groups (Lewig et al. 2006) to improve research impact. In the context of increasing inequality (United Nations 2020), there has been growing attention to knowledge translation – the processes that facilitate “the transfer of high-quality evidence from research into effective changes in health policy, clinical practice, or products” (Lang et al. 2007, p. 355), to close the “know-do” gap (World Health Organization [WHO] 2006). In these discussions, however, one group of key stakeholders has been largely overlooked: those marginalized in the community (McArthur and Winkworth 2013). While approaches such as participatory action research and community-based participatory research have inclusion, partnership, and the sharing of knowledge as central (see Vaughn et al. 2013; Pyett et al. 2017), MacKenzie et al. (2013) argue that such principles have not been taken up more widely by the research community. We seem to be missing those we are most seeking to assist through research. While there have been some moves to address this, often these attempts have been concentrated in the health arena (e.g., see Long et al. 2019), with its arguably more “mainstream” focus. In the social care space, where we are often dealing more specifically with those at the margins of the mainstream, there has been far less attention. In general research terms, these individuals and/or communities, who may experience exclusion through multiple disadvantages and vulnerabilities, are often described as “hard to reach” (Ellard-Gray et al. 2015). While agreeing with the principle, Flynn and McDermott (2016) challenge this label, arguing it implies that the onus of being reached (or not) falls on those being researched. In contrast, they suggest (citing Zea et al. 2003) that difficulties in connecting with particular groups are shaped more by researcher detachment from that population, than the nature of the group themselves. They contend that bridging this gap is the responsibility of the researcher. Some strategies have been suggested to aid researchers in moving closer to

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marginalized or underserved populations, focusing on working with the community/ group, to plan and implement the study; developing members’ research/grant writing skills; as well as sharing findings in accessible formats (Corbie-Smith et al. 2004). While this argument has been framed around accessing marginalized groups for research, it is our contention that the same principles apply when considering dissemination of research. This chapter argues that careful, creative, and co-designed research dissemination can promote social inclusion. We begin by outlining what we mean by both key terms – social inclusion and research dissemination – before outlining the benefits of extensive and diverse sharing of research. We pay specific attention to the role and value of creative interventions and collaborations, particularly identifying design processes as an effective strategy. Drawing on an accepted research impact pathway from the Australian Research Council [ARC] (2019), we then present five case studies, both from our own and other published works. This allows for comparison across the diverse cases. The concluding section synthesizes key learnings and practical strategies for researchers to consider and take into practice.

1.1

Understanding Social Inclusion

Beginning in the 1980s, social inclusion as a concept, and its antithesis, social exclusion, became part of government and community discourse, first in Europe and then more widely. While these ideas were originally considered to capture static groups or experiences (people being seen as either “included” or “excluded”), over time a more complex and nuanced understanding has developed. While there is no accepted definition of social inclusion, it is understood to mean that people have “the resources, opportunities and capabilities they need to learn . . . work . . . engage . . . and have a voice” (Australian Social Inclusion Board 2012, p. 12) and to play a full role in their community – socially, psychologically, and politically (Levitas et al. 2007, p. 21). Conversely, Levitas et al. (2007, p. 25) describe social exclusion as a lack of resources, which leads to people’s inability to participate in the “normal relationships and activities, available to the majority of people in a society.” Despite the desire to “Leave no one behind” (UN 2020, p. 2), such inequalities not only continue to reduce life opportunities, but continue to grow both within and between countries, with digital poverty (Seah 2020) of increasing concern. Social inclusion/exclusion are now understood as being both intersectional in nature and also dynamic. This has brought a subsequent focus on the processes that can include and exclude people. Traditional strategies for promoting social inclusion seek to address the drivers of exclusion – such as poverty or through the provision of information or creating accessibility. Governments and communities have also sought to facilitate inclusion by targeting specific groups and fostering their connections and connectedness to the community. A range of strategies, with different groups, has been outlined, for example, sport and recreation, with young people, refugee groups, or those with disabilities (e.g., see Gibbs and Block 2017; Kelly 2011; McConkey et al. 2013); supporting connection to schools; and via arts/ community arts programs (e.g., see Moody and Phinney 2012). What is of interest to us is that research dissemination, to date, has not been examined for how it can

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foster social inclusion, despite the fact that all research and specifically research in health and social care should have as its primary concern the beneficial impact of this inquiry. Impact, as defined by the Organisation for Economic Cooperation and Development (OECD, 2009), focuses on the community – society and culture, the economy, and the environment – beyond academia. This definition has been taken up and developed in many settings, including Australia, where we are located. This is evident in the Australian Research Council (2015) definition of research impact, which emphasizes effective sharing of research findings that ultimately benefit the well-being of society as a whole. A key premise of our argument is that knowledge is power and that sharing of knowledge, including research knowledge, can be empowering. To be meaningful and effective however, that knowledge must be disseminated and accessible beyond traditional academic pathways, which often use language and epistemologies beyond everyday understanding.

1.2

Research Dissemination and the Translation Gap

Lafrenière, Menuz, Hurlimann, and Godard (2013, p. 1) describe knowledge dissemination as having three key components: what is to be shared, how it is to be shared, and with whom, with the following process: “an active intervention that aims at communicating research data to a target audience via determined channels, using planned strategies for the purpose of creating a positive impact on the acquisition of knowledge, attitudes, and practice.”

Thyer (2001, p. 501) summarizes dissemination as the diffusion of ideas generated by research to those who need and can use them. Traditionally, however, those deemed to need and use this information have been limited to other researchers, practitioners, service providers, and policy-makers. This narrow focus in terms of both audience and impact has seen researcher emphasis on the creation of specific knowledge products as outputs (Ozanne et al. 2017,) and sharing these via peer reviewed publications (Flynn and McDermott 2016; Long et al. 2019); there is an unstated assumption that anyone who needs to can access these. This indirect exclusion of more marginalized groups and communities seems somewhat surprising, given the partnership and empowerment goals of social work and social care (e.g., see International Federation of Social Workers 2018) and the focus in public health on meaningful community engagement. This narrow focus has been challenged more recently in two ways: closer attention to the use and impact of research, while concurrently considering alternative and wider dissemination of findings. There is general recognition now that “[r] esearch impact cannot be achieved from the research production side alone” (Economic and Social Research Council [ESRC] 2020a, b, c, para. 4). This is increasingly evident in funding requirements, which seek a clearer focus on research impact. Yet, there is no agreed consensus on what is meant by impact. Fryirs et al. (2019:1) argue that it is most common to focus on what is easy to measure, “hard,”

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concrete impacts, but that this often overlooks a range of “soft” benefits, which they contend are “a dominant part of the impact mix.” Alongside this, there is no clear advice on how to create impact or how to do it well (Ozanne et al. 2017). What is clear is the need to think about a wider audience and diverse and more responsive methods of sharing research findings. Ozanne et al. (2017) offer some helpful suggestions to both generate social impact and to think creatively about what is meant by impact, all based on what they term “relational engagement,” with a diverse group of stakeholders, throughout the research process. Encouraging researchers to think outside of the academy, they pose a range of ways that impact can be considered: wider and more practiceoriented knowledge products (e.g., policy briefings, trade publications, etc.); increased interactions between researchers and the community before, during, and after research; enhanced capacity of stakeholders (e.g., new skills in research); improved networks across stakeholder groups; as well as awareness and use of research in diverse media (e.g., measured by webometrics, likes and comments, etc.). In the past decade, there has been increased attention to both diversifying of knowledge products and the communication channels through which research is disseminated (Lafrenière et al. 2013), partly as a strategy to reach a wider, nonacademic audience. While noted as typically falling into the domain of qualitative researchers (Bartlett 2013), it is also evident in scholarly debate with regard to quantitative research, therapeutic-health research (including clinical trials), and longitudinal studies (Fernandez et al. 2012; Long et al. 2017; Long et al. 2019; Ondenge et al. 2015). Bartlett (2015) describes health researchers as being at the forefront of these innovations. Two key developments are evident in this expansion, which have both become quite mainstream: the use of creative arts, including the growing interest in visual methods/dissemination (Askins and Pain 2011), and the use of social media, such as YouTube, to both process and transmit research findings. While the use of images is well established in areas such as anthropology and ethnography, digital developments in recent years have seen greater ease in the use of images, both as a method and a mode of sharing results that capture the richness and complexity of the human experience (Flynn and McDermott 2016). As an example, the Economic and Social Research Council [ESRC] in the United Kingdom (UK) has a dedicated YouTube channel (www.youtube.com/user/theesrc). At the time of publication, this had over 150 videos related to research they have funded. While the London School of Economics and Political Science (Personal Social Services Research Unit) developed a comic to share findings from three studies on social care (Brimblecombe et al. 2014), the target audience for many of these initiatives, however, continues to be practitioners, who are argued to be time poor and not inclined to read research journals or research-focused articles (Thyer 2001). More recent initiatives seek to take research to the wider, mainstream, community, bringing together artistic and scholarly endeavors (Cole and Knowles 2008). For example, Pint of Science (2020) which began in the UK in 2012 shares research from social and physical sciences via an annual festival. These are now offered in a range of countries and seek to engage the community with research by running events in local pubs. The UK also offers the Festival of Social Science (ESRC

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2020b), aimed at the general public – including youth, those in business, and in policy-making. The aim is to promote awareness in new audiences of social science research, via events such as film screenings, workshops, public debates, and so on across the country. Despite recent research indicating that both researchers and participants have a strong desire for research findings to be shared more widely, it still happens infrequently (Long et al. 2019; Purvis et al. 2017), with this “translation gap” (Brownson et al. 2018, p. 103) acknowledged as an ongoing problem. Much of this discourse is framed in quite generic terms, though, with little consideration of the needs of a diverse community and specifically those at the margins. Currently, there appears to be limited appreciation of the fact that impact does not land evenly across the community or how to address this. We have found almost no discussion on how to share research findings with marginalized groups in the community, despite these people often being the subjects of research and ostensibly the beneficiaries.

1.3

Benefits of Extensive and Diverse Research Dissemination in Addressing the Translation Gap and Inclusivity

A range of imperatives for and benefits to sharing research widely have been outlined in recent research (e.g., see Purvis et al. 2017). These include participant and community rights and ownership, reciprocity, engaging the community in research, building trust between researchers and community/participants, as well as providing closure for participants. Ondenge et al. (2015) also emphasize the role of research findings in creating positive health impacts, such as enhanced awareness of issues, risks, support services, and improved and informed decision-making. In an era of social media, health research findings can be misinterpreted by affected communities looking for hope or a “cure” (Petersen et al. 2015). Effective research translation to these communities would minimize this risk. Although implied in some of this discussion, there has also been little articulation of practical strategies, beyond work done by those engaging in participatory action research, of research dissemination as empowerment and a way to promote social inclusion and citizenship. This is a gap this chapter seeks to fill. A range of strategies to reach a wider audience have been recommended (e.g., see Davies and Powell 2012; Long et al. 2019; Ozanne et al. 2017; Ondenge et al. 2015; Purvis et al. 2017), such as making use of online/social media platforms to ensure accessibility; writing in plain language; involving community partners, including more active collaboration from the outset; providing results in ways that are culturally and contextually appropriate; having a trusted source provide the results; co-production; and using creative visual and other methods. However, it is important to acknowledge that currently, little is known about the effectiveness of these strategies. Most conclude that a “one-size-fits all” approach is not appropriate and that a variety of methods are needed when sharing research findings (Long et al. 2019; Ondenge et al. 2015). The choice of approach(es) will be dependent on the research topic (e.g., stigma, sensitivity, potential for the findings to be used to further

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stereotype and exclude participants), the participant group (e.g., age, language, literacy, and so on), and the context. One strategy for enhancing widespread and diverse sharing of research findings is working within cross-disciplinary teams. Such an approach has known advantages. Flynn and McDermott (2016) describe a range of benefits, such as bringing together a more diverse group in terms of skills and interests, with access to different knowledge, data, and resources, as well as to different audiences. There is growing understanding of the specific benefits of collaborations between who might be seen as more traditional researchers and those from creative disciplines (Rose and Flynn 2018). The Dax Centre (2015) in Melbourne, Australia, is an excellent example of this. The center uses art from those with lived experience of mental illness to raise community awareness of this issue and reduce stigma.

2

Designing Research Dissemination: Creative Interventions

As outlined, the aim of this chapter is to identify how alternative forms of research dissemination can enhance impact, particularly for marginalized and vulnerable communities. This is not a new phenomenon, but a methodical approach to incorporating these techniques has not been clearly articulated. The advantages of using creative arts as part of research are widely recognized. Creative arts outcomes are normally free of jargon and have an aesthetic appeal (Chilton and Leavy 2014). This provides the potential to reach a broader audience, in more accessible ways (Bagnoli 2009). Human beings can make for messy subject matter in research. The expressive and embodied nature of the creative arts are able to translate the ambiguity of lived experience (Cole and Knowles 2008; Pink 2009; Barrett and Bolt 2014). The creative arts also acknowledge the relational features of the social science research method (Michael et al. 2015), in seeing interactions as central to how people are and make sense of the world. These approaches not just tolerate, but encourage interaction with and interpretation of the data/findings. The “communicative power” of creative arts research practices is also recognized as enhancing overall research impact, with the additional benefit of enabling “silenced voices to be heard in new ways” (Chilton and Leavy 2014, p. 403), and promoting inclusivity (Bagnoli 2009). Incorporating creative research methods is not without its challenges. Indeed Kara (2015), while promoting such methods, also describes them as contentious. The ambiguity described above can open up the research outputs to a higher degree of interpretation, potentially diminishing a more definite conclusion or persuasive argument (Barone and Eisner 2012). The same artwork can mean different things to different people depending upon life experience, cultural or socioeconomic context. This may lead to unexpected interpretations and present ethical issues particularly where it comes to the politics of representation or sensitive subject matter, though these difficult conversations could well be necessary (Keen and Todres 2007). In this sense, the creative art output as provocation should both be acknowledged and incorporated into the research design, an opportunity to ask more meaningful questions than definitive answers.

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A range of arts-based practices now exist and are being used to share research findings in more diverse and accessible ways. These strategies include visual art, animation, poetry, podcasting, photovoice, and other creative art strategies. But method or process is not often articulated, and the variety of artistic approaches make them difficult to apply coherently/consistently to social and health research. Their use is also challenged by the varied expectations about the nature of research that different disciplines bring (Poggenpohl 2015). For some, the spontaneous creativity of art and design can be intimidating or even dismissed by disciplines that privilege a more conservative methodical approach (Sutton and Kemp 2006). Within the creative arts itself is a wide variety of methods, values, and recognized outcomes. There are literary, performative, and visual forms that can result in poems, fictions, plays, dances, film, photovoice, radio, paintings, mixed media, banners, art journals, animations, and so on. Each of these forms has its own theory, history, and values. This may explain why sometimes the communication between social science and creative arts researchers can be challenging or even avoided. Bartlett (2015) notes that there was little dialogue between herself and the installation artist and designers who created the visual material which sought to capture the study findings. This resulted in the artist taking on a “more prominent role than the researcher or researched in the process of communicating research findings” (Bartlett 2015, p. 760). To better integrate the disciplines into a coherent research methodology, we propose a framework that combines social science and creative arts, or more specifically design, to produce a more integrated methodology that will enhance impact for social inclusion. While design has recognized the benefits of social science (Frascara 2002), the design process as part of social science research is less common. There is great potential here as the design process provides a methodology well aligned with the research impact pathway. In part, this is shaped by design research being focused clearly on outputs and outcomes, with its “results” automatically disseminated via its end product. The outcomes of such research are typically used widely in the community in formats including buildings, objects, websites, print advertising, films, and books.

3

Distinguishing Design in the Creative Arts

Design is all around us. It transforms the world we and how we interact with it.1 But to design is to plan and deliver a solution that objectively solves a problem. Art and design exist on a continuum of human activity. But whereas art is relatively spontaneous, subjective, and open to interpretation, design is generally understood to combine form (aesthetics) and function that is of practical use for its intended audience. This is not to deny creativity in design nor the practical use of art. But 1

These transformations are not always positive, and design is often required to help solve problems it created itself, e.g., pollution from industrialization.

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Fig. 1 Double diamond model of the design process. (Design Council UK 2020)

design is ultimately judged on its practical application. It requires planning, testing, and implementation and is, therefore, a more transparent process than art. One common understanding of the design process is the double-diamond model launched by the UK Design Council in 2004 (see Fig. 1). The double-diamond model is a four-stage process. It firstly explores the issue through a process of discovery to understand the people, environment, and other factors that contribute to the situation. Secondly, the design problem is defined by the insights gathered from the discovery process. Thirdly, ideas are developed in response to these insights and some of these can be highly speculative. Finally, the best ideas are selected for prototyping, development, and final delivery. The four stages are not mutually exclusive. For example, ideas generated at the develop stage may provoke new questions that require further inquiry to define the problem differently. But overall, the model provides clarification to those outside the design field to demystify design’s creative process. How the double-diamond model could be incorporated into the Research Impact Pathway is explored later in the chapter. In the next section, we will present and review case studies to consider the effect of including alternative creative dissemination strategies to enhance impact.

4

The Research Impact Pathway: Using Case Studies to Unpack Impact

In Australia in recent years, the ARC has emphasized the importance of research to improving community well-being. The Research Impact Pathway table was developed to enable researchers to incorporate impact into their planning from the outset.

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Table 1 ARC research impact pathway Research impact pathway Inputs Activities Research Research work and income training Staff Workshop/ Background conference IP Infrastructure organizing Facility use Collections Membership of learned societies and academies Community and stakeholder engagement

Outputs Publications, including e publications Additions to national collections New IP: patents and inventions Policy briefings Media

Outcomes Commercial products, licenses, and revenue New companies spin offs, start ups, or joint ventures Job creation Implementation of programs and policy Citations Integration into policy

Benefits Economic, health, social, cultural, environmental, national security, quality of life, public policy or services Higher quality workforce Job creation Risk reduction in decision making

ARC (2019)

It highlights the key stages of the research process and provides examples of how impact can be considered and addressed at each stage. It is important to acknowledge, however, that research does not occur in a linear fashion. It often needs to respond, adapt, and evolve over time, with impact potentially occurring at different and intersecting points (Fryirs et al. 2019). Despite these limitations, the Research Impact Pathway is a clear attempt to bridge the translation gap, by taking the focus outside of the academy, to the community, foregrounding the need for researchers to focus on the benefits of their work. Despite these positive steps, it does not go far enough and does not expressly address the challenges of creating impact for and with those who are marginalized/socially excluded. The pathway table is reproduced below in Table 1. It draws attention to activities which occur throughout the research process, which seek to create impact. We use this table to shape the case studies, compare and contrast activities, and highlight recurring themes. Indirectly, we also seek to challenge and expand upon the focus of the pathway, to diversify what can be seen to be useful inputs, activities, and outputs. Importantly we also seek to highlight what Fryirs et al. (2019) refer to as “soft” outcomes and benefits, with an emphasis on social inclusion.

4.1

A Case Study Approach

A case study approach is utilized here given the paucity of knowledge on this topic. Drawing on a small number of research examples which pay close attention to sharing their findings widely, creatively, and/or with marginalized groups allows in-depth exploration of the factors and processes at play and the identification of good practice principles. The five case studies presented here illustrate how research findings can be shared to promote inclusivity. Some are based on our own work, and

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others are drawn from published work that sparked our interest and attention when we read them. We are not claiming that these cases are widely representative of work in this space; rather they are more akin to an extreme case sample (Patton 2015; Liamputtong 2020), where we have deliberately sought out work that focuses on creative dissemination – to highlight successful strategies. Cases are structured and presented based on the Research Impact Pathway presented above. This is chosen as a pragmatic tool that allows cases to be deconstructed into a range of activities over the life cycle of a study; it facilitates comparison, evaluation, and synthesis. The ARC is also a key funding body for social research in Australia and is influential in determining what research is done and how. They, like other major funders of social research, such as the ESRC, have a clear focus on impact and want researchers to engage with those who we want to make use of research. In this chapter, we seek to stake a claim for the importance of including those in marginalized groups as key end users. Case studies presented have a range of audiences who may be considered outside of the mainstream. They illustrate and critique the use of cartoons to share findings about social activism and dementia (Bartlett 2013); child-friendly methods, such as a coloring-in poster and video (Egli et al. 2019); best practices for police when arresting and processing arrestees with autism (Holloway et al. 2020); dramatizations to inform those who are subject to a mental health assessment about their rights (Rose 2017); and animated documentaries to share stories of children who had experienced parental imprisonment (Rose and Flynn 2018). Each case study is presented as a whole “story.” An integrative discussion follows. We conclude by drawing on the double-diamond design process to present practical strategies as tips for researchers.

4.1.1 Using Cartoons to Share Research Findings2 Bartlett’s (2013) paper reflects on disseminating findings, via cartoon, from a qualitative study in the UK, which investigated what leads higher functioning people with dementia to become involved in social activism. The choice to use cartoons to capture and share the findings was shaped by three key factors. First is a desire to target the wider community as the audience, as this medium is a widespread phenomenon in popular culture. Cartoons are argued to be accessible to many, with the capacity to communicate complex messages in uncomplicated, but powerful, ways. Dementia, although widespread in the community, is something often approached with fear. Core messages, delivered in a simple format, were seen to be an effective way of raising awareness. This medium was also chosen by the author in reflecting on her interactions with the study participants, who were observed to often use humor in the telling of their stories (in fact, one participant during the time of the study had published a book of jokes about dementia). Finally, this approach to

2

This case study/vignette draws predominantly from the article published by Ruth Bartlett (2013), augmented by a discussion with the author (May 13, 2020), with some reference to a later article (Bartlett 2015).

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sharing research findings was seen to offer an opportunity to test a cross-disciplinary collaboration. Inputs: A multidisciplinary team was involved: a visual artist, visual sociologist, professional cartoonist, and one participant from the study. No funding was involved, and attention to sharing the research findings in alternative ways came later in the project, after data were collected. This was partly the result of serendipitous co-occurring events: the author Ruth was aware of a particular cartoonist and at the same time attended a visual sociology event where cartoons were presented. Activities: The team worked together over approximately 3 months to develop, create, and collaboratively agree on single cartoon images, capturing key themes in the data. Outputs: Five cartoons were displayed in an exhibition which ran for 10 weeks at Bradford University. Along with the cartoons, there was an interactive storyboard, on which visitors could add comments about the exhibition. Outcomes: The presentation was attended by psychology students and school groups, as well as academic and administrative staff from the university. It is not known what became of the images after this exhibition or if the images were exhibited more widely. Benefits: Evaluation of this approach to sharing research findings was limited, drawing on the storyboard comments and a visitor book; audience feedback was described as generally positive. Interestingly, the author reflects that the project did not spark discussion of activism and dementia as she had thought would happen, but notes that it did start a discussion about the use of cartoons in research dissemination. This prompted further consideration by the author of the use of art in communicating research findings. She reflects, in a subsequent article addressing this (Bartlett 2015, p. 755), that “art is a powerful tool for communicating research knowledge but it can overshadow the scholarly endeavour to both positive and negative effects. Researchers need to be aware of what art can offer, and what it cannot, when it comes to research communication.” In relation to the use of cartoons, the author concludes that in sharing findings, researchers must be mindful of the choice of medium, for example, in this case, so as not to be seen to trivialize or make the issue of dementia less of a concern.

4.1.2

Neighbourhoods for Active Kids: Sharing Research Findings in Child-Specific Ways3 Egli et al. (2019) report specifically on the sharing of findings from the Neighbourhoods for Active Kids study done in Auckland (N ¼ 1102, 8–13-year3

This case study is based on a published article by Egli et al. (2019).

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olds), which examined the impact of the built environment on children’s activity. They had a clear and specific target audience, including the children, families, and schools who had participated in the study, though it is probable that the wider community were also a secondary audience. The authors explain that attention to sharing materials in a range of ways that were very specific to children was shaped by two core and connected frameworks: human rights and the sociology of childhood. Following the United Nations Convention on the Rights of the Child ensured that the study was framed in respect, with children having the right to know the results of research about them and to have these findings shared in ways that are understandable. Similarly, being informed by a sociology of childhood approach brought a commitment to child-centered research, and ways of communicating and consulting with children, that enabled them to contribute meaningfully.

Inputs: A multidisciplinary team was involved in the dissemination activities for this study. These included a nursing academic, graphic designer, and child actor; a number of other children were also involved. Having the time and resources to co-produce materials was seen to be important in this research; the authors noted knowledge sharing with children is known to be “challenging, expensive and to take a substantial amount of time” (p. 258). Activities: All of the “team” were involved in giving feedback on and shaping the final knowledge products to be shared. Findings were distributed to their target audience of participants throughout the study, as an integral part of the research. The authors were clear that this was about responsiveness: allowing participants to have the information they needed to make choices about their health. They note that their emphasis on timeliness was also influenced by knowledge of how long it often takes to finish analysis and share results. Outputs: A range of outputs was produced; these were specifically tailored to individual children and/or families, as well as to schools. The materials for children were explicitly designed to be interactive (e.g., coloring-in poster, word search, and so on). Accessible language was also core to these products, balancing being “. . .appropriate for the majority of children . . ., while simultaneously providing enough information for parents and whānau (family members) wanting to know where to go to find out more information” (Egli et al. 2019, p. 265). In addition, there have been some wider outputs, including a short YouTube video, using images from other knowledge sharing projects and a voice-over. Outcomes: Given the recency of this research and publication, data are still being analyzed, and it is not possible to comment on any specific outcomes of this approach to research dissemination. With regard to other outcomes, the YouTube clip – available from November 2018 – was viewed about 380 times in the following 18 months. The authors also shared their reflections on dissemination of research results to children in a published open-access article; (continued)

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in the subsequent 12 months, it was viewed just under 1400 times and forms the basis of this case study. Benefit: Child participants and their network (families and schools) receive study findings tailored to them, with the aim that this enables them to make more informed choices. The authors present their “tips” for sharing research with children: “(1) Consult children and incorporate their feedback throughout; (2) Allow space for change and adaptation; (3) Meet children where they are at in the digital world and in the physical world; (4) It’s OK to ask for help; (5) Be careful of the words you use” (Egli et al. 2019, p. 267).

4.1.3 Police Custody Responses to Autism4 Chloe Holloway, beginning with her PhD (funded by the Economic and Social Research Council [ESRC]), and in a subsequent project led by her colleagues, Dr. Danielle Ropar in the School of Psychology and Dr. Nell Munro in the School of Law at the University of Nottingham, crafted a project which sought to explore the experiences of autistic people during the police custody process. The aim was to have a practical impact on the custody process and experience – by understanding and, therefore, improving the support received. Given the practice focus of this research, findings were shared via the development of a practical training tool for law enforcement staff; the initial target audiences were participants and the local police. However, as the project developed, the target audience also grew, to include national police, policy-makers, and the community more generally. Input: The initial project was funded by the Economic and Social Research Council. Chloe has also received a small financial sum through the ESRC Celebrating Impact Prize and further support through an ESRC Postdoctoral Fellowship which has helped her further the national impact of the project. The second stage of the project was funded by a Nottingham Impact Accelerator Award. Activities: Both autistic people and custody staff were involved in the building of the autism training and toolkit and in developing strategies to translate the findings into practical outcomes. The subsequent establishment of the Nottingham Autism Police Partnership allowed for the identification of priorities for change and strategies to address these. Outputs: Training for police was a key aim for this project, with an Autism Training Package, Toolkit and Training Video produced. Further outputs were (continued) 4 This case study is based on a range of sources: published material (Holloway et al. 2020), ESRC video (https://youtu.be/qAoW5U54bXM), blogs, and email communication with Dr. Chloe Holloway (April 20, May 21, 2020). Further peer reviewed articles have been developed from this work. Our focus in this case study is the strategies for sharing outside of traditional publication.

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developed in response to gaps identified: (1) an application for specific, translation-oriented, funding (Nottingham Impact Accelerator Award) and (2) the Nottinghamshire Autism Police Partnership was established. Findings from this research have also been shared via a short video on the ESRC YouTube channel; this was not a planned output, but was generated because the researcher won an ESRC Impact prize for her work. They have also been promoted through a project website: https://www.nottingham.ac.uk/research/ groups/autismandpolicing/index.aspx. Outcomes: As a result of the additional funding and a strengthened relationship with local police, more specialized training was developed, as well as a co-produced policy brief on autism and policing. Some practical changes in local policing practices during the arrest/custody process have also been made. Posting the findings via YouTube ensured these have been shared in an accessible and much wider way: the video had over 1400 views in the first year. It has generated considerable interest, and Chloe reports many people, including from the police, making contact after this about her research and how the findings could be taken more widely. Benefits: Overall, this study seems to have met its aim to raise awareness of the challenges autistic people face when in police custody; this has occurred both directly with local police and at a national policing level, as well as in the community. It would appear that hitting many targets in many different ways, with a clear and practical focus, while working in partnership, has contributed to the widespread sharing and impact of this research. Embracing co-production is considered by Chloe to have helped police forces and organizations understand the lived experiences of autistic people, the real-world impact of the issues, and the importance of making changes. She also considers that it has also fostered good working relationships between autistic people and police forces and academics. The study’s impact has been influenced by three other influential factors: strong commitment by the researcher to sharing findings in ways to address issues of marginalization for autistic people, aided by the development of personal connections and relationships; the resources to work creatively and share research findings in meaningful and impactful ways; and support from influential/powerful groups or platforms who have assisted in delivering the message.

4.1.4 Victorian Dual Disability Service (VDDS) Video5 Rose, a design academic, was approached by the Victorian Dual Disability Service (VDDS), in Australia, to create an alternative method of informing individuals of their legal rights when required to undertake a mental health assessment. The

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VDDS video case study based on Rose’s research, emails with VDDS (29 November 2017 and 9 June 2020), and an assessment of an improvement activity conducted by VDDS (November 2017)

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outcome was to be used by psychiatrists who are making the assessments with service users. They had previously used a folded A4 pamphlet about client rights. This was to be given to the individual prior to the assessment along with a verbal explanation. Input: Input was received from VDDS clinicians, health workers and management, and consumer advocates (for those being assessed). Actors and the production team also contributed to the final outcome. It was financed through the VDDS and St. Vincent’s Hospital Melbourne with an $8000 production budget. Activities: The VDDS project went through a number of stages. Initial meetings with VDDS clinicians, health workers, and managers culminated in a workshop. At this workshop, the mental health assessment procedure was outlined. VDDS staff also role-played the interaction between clinician and the individual being assessed. The role-playing activity was highly productive and revealed the diverse and idiosyncratic nature of the assessment. A literature review identified video modeling as a potentially effective means of encouraging individuals, particularly those with autism spectrum disorder (ASD), to engage with information. As practice experience from the VDDS team indicated that many of the people being assessed were likely to have ASD, video modeling was recognized by VDDS as a useful format for delivery. A screenplay was developed by Rose and sent to VDDS for feedback. The screenplay dramatized a visit by the VDDS to the home of an individual being assessed and his mother. The clinician explains the process and the rights of those being assessed. After a brief discussion, he acknowledges he understands the process. The screenplay was approved and pre-production commenced. Auditions were held to cast the actors (with a VDDS clinician playing as themself), and a location for filming was selected. A brief rehearsal on location with the actors and videographer helped to refine the direction and camera placement. Production of the video was completed in 1 day. The first edit was sent to VDDS for approval. A short, humorous interaction in the video to momentarily shift the power balance between the clinician and the person being assessed was removed from the edit at VDDS request. Output: The finished video (4 minutes 30 seconds duration) was supplied to VDDS. Outcomes: The video is used by 5 clinicians who conduct approximately 200 assessments per year. It continues to be used as of June 2020. Benefits: The video has simplified the explanation of a person’s legal rights when undergoing assessment. An assessment of the video conducted after a 3-month trial found a positive benefit with 90% of consumers (n ¼ 10) who viewed the video agreeing that it helped either “a lot” or “very much” to understand the assessment process.

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My Life Now: Animated Documentaries About/for Children who Have

Experienced Parental Imprisonment This case study is an example of where additional research dissemination formats were created after the principal research was done. Flynn, a social worker, had interviewed children whose parents had been incarcerated in the criminal justice system as part of her doctoral research in Victoria, Australia. The transcript of the interviews was then performed by actors, and it was this material that formed the basis of the animations My Life Now (2015). The intended audience was children/ young people who had experienced parental imprisonment and sought to provide stories of young people’s lives in a format that was accessible and not reliant on literacy skills. Secondary audiences included those who work or advocate for these children and the general community, to raise awareness. Input: Previous research by Flynn was proposed as a suitable topic for a year 2 communication design project. Students in the motion graphics design stream were presented with six pre-recorded voice-overs to create animated documentaries. No funding was involved, but the project benefited from the human resources of the students and input from both Rose and Flynn. Further resources also included a link to national children’s charity SHINE for Kids (who advocates on behalf of children who have a parent in prison), who commissioned the animations to share on their website; this was part of ongoing work with Flynn. Rose and Flynn had also previously collaborated with Kerry Brydon on a film that examined social work in Papua New Guinea titled Envisioning Tomorrow (2013). Activities: Rose and Flynn introduced the project to the communication design students. The audio of the “performed” interviews were shared with the students online. In consultation with Rose, the students developed concepts, screenplays, and storyboards. The students produced “animatics,” animated storyboards which are critiqued before the more time-consuming full animation. The animations were shared with Flynn and SHINE for Kids who gave further feedback. Output: Rose and Flynn (2018) authored the paper “Animating social work research findings: a case study of research dissemination to benefit marginalized young people.” Outcomes: Sixteen videos were produced. Of these, a selection was featured on the SHINE for Kids channel on YouTube and at the website https:// www.shineforkids.org.au/mylifenow. The videos have also been exhibited at a number of events and seminars and in social work tuition. Benefits: The selected videos have now been viewed over 2000 times since 2015. SHINE for Kids uses the videos for advocacy, education, and philanthropy. Data on the benefits for affected children is however unavailable.

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The case studies demonstrate a variety of approaches and varying degrees of measurable success. Almost all inputs and activities incorporate an inclusive agenda as well as interdisciplinary engagement. “Neighbourhoods for Active Kids” (4.2), “Police Custody Responses to Autism” (4.3), and the “VDDS Assessment Video” (4.5) demonstrate significant inclusivity and interdisciplinarity. This appears to be directly correlated with benefit. “Using Cartoons to Share Research Findings” (4.1) had inclusivity incorporated into its design, but the absence of a considered interdisciplinary exchange created tension between the scholarly and alternative forms of dissemination. The principal researcher, therefore, found it difficult to identify some research benefits because of this conflict. However, the creative activities were identified as building “closer relationships” among research participants, therefore suggesting enhanced social inclusion (Bartlett 2015, p. 764). “My Life Now” (4.6) included a variety of activities and participants. But beyond the number of views, it is difficult to identify specific benefits. The challenge evident in most cases is that outcomes can be thought of as “soft” benefits that make impact in ways unknown to the researcher and long after the outcomes are published (Adams et al. 2016).

5

Practical Guidance for Designing Research Impact for Social Inclusion

Although in recent years there has been increased focus on research impact and engagement with end users, including more recent expectations about user engagement and consultation throughout and targeting of specific user groups marginalized groups and communities remain outside of these discussions. The ESRC (2020a) outlines principles and practice of knowledge exchange. The principles suggest that greater inclusion throughout the research process will result in greater impact. However, the planning for inclusion should be open enough to allow for opportunities that occur during research. This strategy should also enable time for researchers to explore knowledge exchange. We will argue that an interdisciplinary design methodology facilitates inclusion, allows flexibility, and provides clear opportunities for knowledge exchange. This chapter, and specifically the case studies examined, draws explicit attention to marginalized groups and communities and highlights a range of strategies for sharing research findings with inclusivity as a core aim. In this conclusion, we distil the key messages, linking these to the Research Impact Pathway and the double-diamond design process. By linking these together, we will demonstrate how creative collaborations using a design methodology enhance research impact and social inclusion with greater interdisciplinary transparency.

5.1

Integrating the Double-Diamond Model with the Research Impact Pathway

The double-diamond model of discover, design, develop, deliver can be used to integrate into various parts of the Research Impact Pathway. It creates extra inputs,

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diverse activities that promote inclusion, a variety of outcomes, and the ability to return to previous stages when opportunities arise.

5.1.1 Inputs At this early stage, a diverse group of collaborators provide cross-disciplinary expertise, including lived experience – from the communities with whom we seek to engage, to establish broad parameters for the research. This “expanded field” can create shared values and vision (Sutton and Kemp 2006). Expertise in differing domains can assist in how varying forms (academic, literary, visual, performative) may be interpreted at each stage of the research. The social science researcher understands how to interpret scientific data, the designer understands how images communicate, and the actor or director can bring the research to life through voice, movement, and gesture. Lived experience brings a real-world focus, which can “deepen the group’s collective knowledge and capacity to take action” (Sutton and Kemp 2006, p. 126). Additionally, these connections create a network of expertise that can be applied for future research and projects. For example, the new relationships can lead to other organizations and infrastructure to enrich and inform the research. 5.1.2 Activities Because there is now a variety of inputs from a range of experts, the scope of potential activities widens. Traditional quantitative and qualitative methods can be enhanced through creative interventions such as role-play, poetry, art, and video. As Bartlett (2015) highlights, these alternative activities brought research participants closer together. It creates a “contact zone” where different ontologies or ways of knowing intersect (Haraway 2008). The activities in the contact zone allow research participants to perform according to their skill and experience. It can diminish the power dynamic between researcher and participant. The “subject” can perform their knowledge in a form and language that is authentic for them. The expanded field of experts will be able to translate the enactment of lived experience for the benefit of others. From these activities, other opportunities may arise and, being discovered early enough, are able to be included or adapted to the project. These activities can produce numerous outcomes that can be used during a research project to fully realize its potential, communicating early findings expressively to others, and provide a document for future analysis and dissemination. In the double-diamond design process, these activities predominately fall in the discovery and define stages. The researchers and research participants are co-designers who collaborate on a project. This does not mean to discount or exclude expert knowledge, but to include alternative ways of knowing to ensure greatest benefit through authentic understanding and respectful representation of individuals and communities. 5.1.3 Outputs Develop and deliver are the third and fourth stages of the double-diamond design process. In design, the development stage does not necessarily produce usable

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products and artifacts. Instead, ideation produces a range of outputs that can be speculative, risky, or provocative. This can be challenging to risk-averse researchers and ethics panels. Great care needs to be taken and the process thoroughly explained to all participants. But there is also the opportunity to use the early outputs to trigger new discoveries and engagement while the research is still active. An early video from the research may go “viral,” reaching a diverse audience keen to support or advocate for the research. Outputs can make abstract ideas tangible, focusing all those involved, and reiterate or even correct the direction the research is taking. A creative collaboration crystallizes the values and implications of the research (Poggenpohl 2002). After the initial ideation prototypes can be delivered that have already been tested through the ideation stage. Research participants have already considered the outputs and adduced their authenticity and suitability for dissemination. It can also ensure that the research does not become oversimplified and consequently remove the scholarly value of the research. Ideally, at this stage the network of expertise has been working collaboratively from the beginning and, therefore, much more able to bridge the translation gap between researchers, participants, intended audience, and other stakeholders.

5.1.4 Outcomes The number and variety of outcomes are project dependent. But the diversity of outputs that have been collaboratively produced will enhance the scope of potential outcomes academically and socially. The creative outputs will have also been designed to be socially inclusive and provide time-poor practitioners easier access to research findings. Design innovations can lead to new start-ups, joint ventures, and job creation. A broader audience means greater opportunity for advocacy and changes to policy. 5.1.5 Benefits The immediate benefits to designing research impact for social inclusion will be to create multiple channels of communication to a diverse range of stakeholders for improved services and education. Instead of the research findings being shared through traditional academic channels (e.g., journals and conferences), the immediacy of diverse outputs will have an accelerated social, cultural, and environmental impact. But beyond the immediate project, the interdisciplinary relationships formed through this collaborative approach can create new partnerships, networks, and expertise that can be applied to future projects. Indeed, this chapter is a result of the authors’ collaboration beginning with a University of Papua New Guinea project in 2012. Subsequently, that collaboration has led to new partnerships, multiple additional projects, and innovative health outcomes.

6

Conclusion and Future Directions

Research and research dissemination takes place in the real world, which is characterized by increasing social division. While we may have a growing awareness of these divisions and indeed of the value and strength in diversity, we remain

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challenged by how to engage and connect effectively with the diversifying groups and communities who are experiencing inequality and exclusion. Researchers are often accused of being in an “ivory tower,” disconnected from the concerns of the community. We need to take up this challenge to be more relevant, to move closer not only to the community, but to the margins. This will require creativity and collaboration and a range of strategies. It will also require us to be out of our comfort zones, to know that our way of being and knowing is not the only way. One size does not fit all. This chapter has drawn from a range of innovative case examples to illustrate the sharing of research findings to promote social inclusion. Integrating core notions from the Research Impact Pathway with the double-diamond design model allowed us to highlight key strategies for researchers seeking to engage in these processes. While recognizing that neither research nor design is a linear process, the structures presented here can guide and support researchers to embed thinking about research impact from the planning stages. Key to this process is harnessing diversity throughout: in resourcing, the skill and knowledge sets of the research team, the outputs produced, as well as the outcomes and benefits generated. Harnessing research dissemination of the type argued for in this chapter provides one way for us to promote inclusion: providing resources and opportunities for marginalized groups and communities to be able to engage more fully with knowledge and ultimately in the life of the community.

References Adams, L., Barstow, C., & Uhlmann, P. (2016). What is ERA really measuring? In Proceedings of the 2016 ACUADS conference. Askins, K., & Pain, R. (2011). Contact zones: Participation, materiality, and the messiness of interaction. Environment and Planning D: Society and Space, 29, 803 821. Australian Research Council [ARC]. (2019). Research impact pathway table. Retrieved from https://www.arc.gov.au/policies strategies/strategy/research impact principles framework# a name%2D%2Dstrong research impact pathway table strong%2D%2Dtitle research impact pathway table a strong research impact pathway table strong . Accessed 1 Sept 2020. Australian Social Inclusion Board. (2012). Social inclusion in Australia. How Australia is faring (2nd ed.). Canberra: Commonwealth of Australia. Bagnoli, A. (2009). Beyond the standard interview: The use of graphic elicitation and arts based methods. Qualitative Research, 9(5), 547 570. Barone, T. J., & Eisner, E. W. (2012). Arts based research. Thousand Oaks: Sage. Barrett, E., & Bolt, B. (2014). Material inventions: Applying creative arts research conference. London/New York: I.B. Tauris. Bartlett, R. (2013). Playing with meaning: Using cartoons to disseminate research findings. Qualitative Research, 13(2), 214 227. Bartlett, R. (2015). Visualising dementia activism: Using the arts to communicate research findings. Qualitative Research, 15(6), 755 768. Brimblecombe, N.S., Stevens, B. and Hu, M. (2014) Tales from social care, Personal Social Services Research Unit, London School of Economics and Political Science. Available at: http://issuu.com/pssrulse/docs/tales_from_social_care (accessed 21 April 2015). Brownson, R. C., Eyler, A. A., Harris, J. K., Moore, J. B., & Tabak, R. G. (2018). Getting the word out: New approaches for disseminating public health science. Journal of Public Health Man agement and Practice, 24(2), 102 111. https://doi.org/10.1097/PHH.0000000000000673.

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Academic Ventriloquism Tensions Between Inclusion, Representation, and Anonymity in Qualitative Research

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Sergio A. Silverio, Catherine Wilkinson, and Samantha Wilkinson

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Throwing the Voice: Tensions Between Inclusion, Representation, and Anonymity . . . . . . 2.1 Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Representation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Anonymity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

The balance between including participants in research, representing them in academic writing, and maintaining their anonymity can be in constant flux. Greater representation may mean compromising participants’ anonymity, while research that is more inclusive may lead to academic representations of data being challenged as inaccurate according to the participants whose data is presented. The situation for the academic in these scenarios becomes akin to walking a tightrope between advocating on behalf of the participants and speaking as an authority on the analysis and interpretation of participants’ data. To deconstruct these methodological and ethical issues, this chapter critically considers the genuine inclusion of research participants in published health and social sciences S. A. Silverio (*) School of Life Course Sciences, King’s College London, London, UK e mail: [email protected] C. Wilkinson School of Education, Liverpool John Moores University, Liverpool, UK e mail: [email protected] S. Wilkinson School of Childhood, Youth and Education Studies, Manchester Metropolitan University, Manchester, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_32

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research, and argues how poor academic practices may lead to tokenism or distinct power imbalances where academic researchers’ voices become elevated compared to the participants’ voices. This is done by introducing the concept of “academic ventriloquism,” whereby researchers may “throw” their voices. This is a term used in ventriloquism to explore how ventriloquists create the illusion their voice is coming from elsewhere (the puppet). Noting how often readers are left unable to “hear” participant’s voices through published research, or where participants’ voices compete for line space, the three sometimes competing concepts of inclusion, representation, and anonymity are discussed. Despite advances in researching “with” rather than conducting research “on” participants, the writingup of academic research remains primarily the responsibility of the researcher who must develop the ability to “throw” his/her voice, so that participants appear to be heard. The chapter presents several ways in which this can be problematic and propose recommendations for facilitating the inclusion and accurate representation of participants in written academic research, to not only promote participant voices and make them audible, but also document them faithfully so they are a genuine reflection of the participant from whom they came. Keywords

Anonymity · Dissemination · Inclusion · Pseudo-anonymization · Representation · Research participants

1

Introduction Words mean more than what is set down on paper. It takes the human voice to infuse them with deeper meaning. Maya Angelou (1928 2014)

Research is nothing, but for the data which participants so generously provide, often at no tangible benefit to them, and occasionally at great personal (psychological or emotional) cost. The notion that participants will willingly divulge their personal experiences despite being on the losing end of a costsbenefits analysis is perpetuated in the health and social sciences alongside the concept of “participatory catharsis” (see Bill 1996). This is a phenomenon in research whereby participants leave a research setting feeling they have gained some – albeit unintentional – therapeutic benefit from processing and recounting their story to a trusted stranger (McClain and Amar 2013), in a designated, nonjudgmental “safe space” (Silverio et al. 2020a). Within the academy, it is widely accepted that to counteract this willful plundering of experiential data, researchers must place emphasis on participants’ voices and appropriately acknowledge the origin and source of said data, detailing its context and scope, while ensuring the participants themselves are provided with adequate anonymity so as not to be identified. Although there has been a long history of developing language to label these delicate acts of balance between inclusion, representation, and anonymity, the colloquial and commonly accepted language

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within academic texts has been to “give” research participants voice (MacMillan 1995). This in itself can be problematic, as it has been argued that in order to give participants a voice, one has to have taken it from somewhere else (Ashby 2011). This renders the researcher all-powerful with the ability to elevate certain participants’ voices, while silencing others at all stages of the research from data collection to analysis, interpretation, and write-up (Kristensen and Ravn 2015). We acknowledge this scholarly debate and the methodological and ethical issues that accompany it, and we situate this chapter firmly within it. In doing so, we are primarily concerned about the hearing of those participant voices. We thus concentrate not on what we can take from those voices, but how researchers can elevate them by ensuring they offer appropriate platforms from which participants can narrate their own stories. This avoids confining participant voice solely to the phases of data collection (see Adams et al. 2020; Silverio 2021). With this in mind, we refer the reader back to the epigraph which opened this chapter from decorated poet, memoirist, and civil rights activist Maya Angelou. This statement highlights that human voice is necessary to infuse published words with meaning; and writing alone accounts for merely words on a page, devoid of substance, heart, soul, or desire. To ensure academic faithfulness to participant data, a series of methodological tools have been employed by qualitative researchers across the health and social sciences. While not an exhaustive list, what follows are examples of how more genuine representations of participant data have been achieved. Although, as some have argued (see Mazzei 2008), it is difficult to know what is a genuine or “true” representation of voice, if one is uncertain of the origin of said voice, when voice has happened, or indeed, if one is unclear as to what does and what does not constitute voice. Nonetheless, and assuming voice is captured when researchers enter the data collection phase, some have been known to attempt the salvage of faithful representation of voice through the employment of critical reflective stances when collecting, analyzing, and interpreting participant data (Belfrage and Hauf 2017). Such processes work to ensure the maintenance of an “objective outsider,” rather than “subjective spectator” status by the researcher (Silverio 2018a), thus allowing participant voices to be centralized in the research. Similarly, researchers have written about undertaking “data-driven” or “data-heavy” research practices (Glaser 1978; Silverio et al. 2019), where the primary focus remains on the raw data and the final analytic product (i.e., themes or a theory or a linked discourse) are reminiscent of the verbatim narrative provided by the participants. Further, analysis of “double-voicing” (Baxter 2014) or “multivoicedness” (Aveling et al. 2015) has been popularized to disentangle participants’ contradictory statements, while offering space and analytical resource to explore and unpack opposing and inconsistent discourse, thus unveiling a deeper meaning to areas of questioning which elicit “narrative conflict.” Equally, a new frontier in qualitative research has focused on the analysis of silences (Glenn 2004; Kawabata and Gastaldo 2015), to understand which questions elicited a retraction of participation or discomfort in answering. Finally, and perhaps most conceptually simple, is “bracketing” (Tufford and Newman 2012), whereby researchers preconceived notions or a priori ideas about the data are actively set aside during the analytical processes to ensure the researcher’s voice does not dominate those of the

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participants (Gearing 2004). This process has also been referred to as “silencing” one’s own voice through iterative analyzes (and re-reading data) to ensure both inadvertent and advertent researcher-led claims are consciously excluded from the analysis (Silverio 2018b). This idea of being able to silence one voice in the participant-researcher relationship while activating another is important to the concept of “academic ventriloquism” we introduce in this chapter. We use this concept to critically consider the ways in which academic authors can “throw” their voices, thus creating the illusion that participants’ are being heard, when really the voice on display is that of the researcher interpreting the participant’s voice. Ventriloquism – in its true sense – is an act of stagecraft in which a person creates the illusion that their voice is coming from elsewhere. The name itself comes from the Latin “venter” meaning “belly” and “loqui” meaning “speak,” thus the literal translation is “to speak from one’s belly.” The act and art of ventriloquism requires the ability to “throw” one’s voice, as if to make it seem the voice is originating from elsewhere (usually a mannequin atop of the performer’s knee), while artfully paying attention and listening to the speaking dummy, when in fact they are the one speaking (Goldblatt 2014). If we extend the ventriloquist scene to academia and academic research, the voice source [participants’ data] is provided to the ventriloquist [academic author] who features itself in the performance. We argue that examples of this voice source include the participant’s verbatim excerpts from interviews, focus groups, diaries, and other qualitative media. However, the script can be manipulated by the ventriloquist [academic author] who may reinterpret the data depending on the reaction of the audience [the academic community such as journals, funders, or peer reviewers]. Thus, between the time of recording and agreeing a script [data collection and transcription/data cleaning], the ventriloquist [researcher] may adapt and rewrite [analyze and interpret] the script, to ensure maximum effect for and maximum reaction from the audience [the academic community]. In short, researchers have many opportunities to misdirect readers as to the origin of the data to make it seem as though the data they present has been quoted from the participants themselves, when in fact, authors may have engaged in artful, and occasionally ad-libbed, reinterpretations of the data. They do this by throwing their own voice, in order to make their voice and not the verbatim data, the final analytic result. While this voice may be reminiscent of the verbatim data, it can rarely be considered a faithful representation. Having introduced the concept of academic ventriloquism, this chapter is structured as follows. First, this concept of academic ventriloquism is applied to three key concepts of inclusion, representation, and anonymity, and consider how they relate to an academic authors’ ability to throw their voice. In doing so, the chapter discusses the need for the maintenance of participant anonymity and its contrast to the requirement to be able to identify the academic author and their voice. The chapter is concluded by proposing some recommendations for facilitating the inclusion of participants in the writing-up of academic research to promote and make their voice audible, while maintaining the balance between representative data and empirical analysis and interpretation.

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Throwing the Voice: Tensions Between Inclusion, Representation, and Anonymity

Data collected and used in qualitative research are, by their very nature, open to interpretation. They are the anecdotes, stories, musings, thoughts, feelings, perceptions, experiences, and emotions of individuals told to the researcher or uncovered through history, in the case of archival research. Humans are great storytellers, and we find endless ways to preserve the memory of events which occur or in which we participate over the lifecourse (Silverio 2021; Thomas and Znaniecki 1920/1996; Wainrib 1992; Worth and Hardill 2015). In doing so, we amass countless words which we bring together as narrative representations of the events, which can be embellished, obscured, forgotten, deliberately omitted, or (mis)interpreted. The task of the researcher is to make sense of these narratives in the context of that one person (participant) and across the context of the data from all persons who take part (the dataset). This act of collecting data from personal archival matter or through purposeful conversations (see Burgess 1984, 1988) is the first and only time the researcher has to make a true representation of the narrative being shared, for there may not be another opportunity to check the recorded information for accuracy. It is also the first opportunity the academic researcher has to obfuscate details in their act of academic ventriloquism. Despite advances in research with rather than on participants through participatory research agendas and better collaborative working practices, as well as the advancement of more transparent and open academic research practices, the writing-up of research remains largely the responsibility of the academic researcher. There are a number of ways in which this can be problematic, owing to decisions made by the academic, mostly independent of the participants, and sometimes in the absence of any other academic colleagues (in the case of single-author manuscripts). This, ultimately affects the inclusion and representation, of participants, and undoubtedly effects the ability for participants’ voices to be heard. What follows are more detailed assessments of the key concepts of inclusion, representation, and anonymity. Specifically, how the academic ventriloquist can manipulate each of these in order to deliver the final act is considered.

2.1

Inclusion

On a surface level, inclusion may appear to be a simple and straightforward concept to achieve. However, in academic writing, inclusion goes beyond simply presence or absence, as a balance must be struck between personal data being kept anonymous and participants being written about as individuals within a dataset and not just as “data.” Furthermore, academics must also deal with the inclusion of persons who hold an unequal status with them as a participant in research (Karnieli-Miller et al. 2009). Commonly the researcher holds a position of academic authority, while the participant holds the knowledge researchers so desire. The participant in research, therefore, may at once feel they are of inferior and superior status. Inferior, as they are participating in the research of a highly educated individual who works for an

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academic institution, which can, in itself, be intimidating, particularly when the aim of the research may be to investigate emotional or traumatic events. Yet, superior because, without them and their recounted experiences, there simply is no research. It has been argued that for research to be truly inclusive, participants must be included at every stage of the research process – from study design; applying for funding and ethical approvals (where applicable and appropriate); to data collection, management, analysis, and interpretation; and finally to write-up, publication, and dissemination (see Wilkinson and Wilkinson 2017). While many initiatives have been developed to include participants, clusters of participant involvement, usually around study design and data collection have been noticed. This leads to uneven inclusion of participants and an overreliance on participants who are confident orators, while less confident public speakers may be excluded. In the UK, the National Institute for Health Research [NIHR] has long provided guidance on how best to initiate Patient and Public Involvement and Engagement [PPIE] in research through their INVOLVE resources (NIHR 1996, 2019), which proffer guidance on how participants should be consulted on research and what remuneration is appropriate for such involvement. Further, they have recently launched their INCLUDE initiative (NIHR 2020). This aims for applied (health) research in the UK to better engage participants in research, especially those who are underrepresented or underserved in society, such as members of Black, Asian, and minority ethnic groups; those with limited-to-no English language ability; people with various disabilities; and those from low socioeconomic backgrounds, or with high social complexity. They state good quality inclusion can be achieved by having the community of interest embedded as part of the research infrastructure, who can be engaged at various checkpoints along the course of the research. Participants who engage in this way have to be properly recompensed for their time and contributions (NIHR 2019), for which researchers’ budgets or resource allocation may be ill-equipped (Oliver et al. 2019). Researchers may have to work hard to sustain such high levels of engagement (see Adams et al. 2020), and/or work with relevant gatekeepers who can safeguard both participant and researcher interests and resources (Emmel et al. 2007). The most obvious way participants are included within published outputs is through verbatim quotations taken from interview or focus group transcripts, or other sources of data. However, participants’ perspectives of these quotations have rarely been sought (Corden and Sainsbury 2006). While some participants may be disappointed at how few of their words a researcher has chosen to use, others have been shocked at how strongly they have featured within published work: “I thought it would be tiny little one phrase that we said, in a huge big pile of papers” (Pinter and Zandian 2015, p. 235). To counter these issues, some qualitative researchers engage participants in the selection of quotations and interpretation of their meaning. This process has many guises. Some authors have included participants in decisions about what content is included within an article through interview transcript approval (Mero-Jaffe 2011; Wilkinson 2015), whereas others have sought approval of analytic meaning or empirical interpretation through member-checking (Goldblatt et al. 2011); that is, having participants approve final analytical results, discussions, and conclusions.

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Approving transcripts with participants is considered good practice in terms of ethics in qualitative research; however, some have questioned its usefulness (Thomas 2017). For instance, it also promotes the opportunity for participants to redact great swathes of data after having time to reflect upon what they have said, which may limit its utility. Member-checking has quickly fallen out of favor for various reasons tied in with ethics and maintenance of empiricism in the social sciences, with ethics being most often raised as an issue (Chase 2017; Guillemin and Heggen 2009; Hewitt 2007). To offer the participant’s own transcript back to them for approval is one thing, however, to allow participants who, for the majority of studies, will be untrained in the discipline or the methodological approaches, leaves empirical, analytical, interpretation open to lay critique. For instance, requests may be submitted by participants for research conclusions to be changed on the back of participants’ discomfort with what has been empirically reached (MacMillan 1995). More recently, training for participant-researchers has been experimented with in order to ensure participants’ inclusion in analysis and write-up meets the requisite standards of empiricism, ethics, and rigor, as are expected from the academic researchers who are leading the project (see Kara 2017; Kellett et al. 2004; Newburn et al. 2020; Probst 2016). Mero-Jaffe (2011) notes the transfer of transcripts to participants is intended to empower participants by allowing them control of what is utilized within the analysis. However, sharing all the data and analysis (regardless of whether it has been anonymized) with participants before the manuscript has been drafted creates the opportunity for participants to be “outed,” if the population of interest were known to one another, whereas, the researcher may have carefully selected less identifiable data to include in the draft manuscript. Further, Wilkinson and Wilkinson (2017) state that when participants are checking the researcher’s interpretation of their voices, attention should not only be paid to addressing concerns of ‘“Is that what I said?”’ (Mero-Jaffe 2011, p. 231), but also how things are said. These include notation of accent, dialect, enunciation, and speech characteristics, such as grunts, false sentence starts or stammers, pauses, bursts of laughter, bouts of crying, repetitions, gestures, and reference to body language. These notations can all offer important context, which may be important for certain qualitative methodologies (see Silverio et al. 2019). Here, conflicts arise between a researcher’s desire to present narratives as were originally stated to preserve their academic and empirical integrity versus how participants might want their narratives to be presented after time and space for reflection on the account they gave. Where participants may wish to embellish or embolden some parts of their narrative post hoc, or even edit or expurgate things they have said which they believe may compromise them, others may want to completely erase their participation from record and, therefore, expunge themselves from the dataset. Inclusion of participants in all aspects of research, therefore, allows for the first act of academic ventriloquism to be played out. Researchers will have to work quickly to diffuse any ill-feeling participants may have when seeing the empirical analysis and interpretation for the first time. Likewise, it is the first occasion where academic researchers can throw their voice to interpret participants’ narratives in

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a way which will be acceptable to the academic audiences they are compelled to please. Inclusion can, therefore, be tokenistic to ensure there is a record of inclusion so that a brief sentence can be included in a methods section of an article which “ticks a box” on the peer reviewer’s checklist when, in essence, the academic ventriloquist may obfuscate the true level of participant inclusion to make it appear more than it actually was. If inclusion is problematic, it is then only correct to turn to representation, which goes beyond the involvement of participants in the research, to the faithfulness to the original words and meaning.

2.2

Representation

The concept of representation may be – as suggested above – a little abstract in its meaning, and difficult to conceptualize when working empirically. The idea behind representation is such that participants are not only included in the research, but that research findings and final analytic results of such empirical exercises are a faithful portrayal of the participants from which data were derived. Despite its importance, representation of participants in published work has received relatively limited scholarly attention (Wilkinson and Wilkinson 2017). Representation is a complicated issue in health and social science research. This is because the researcher reflects a vision of the reality of a participant who has been subject to distortion through the analytic and interpretive phases of research (Foster 2007, 2009). The interpretation of the participant’s voice may also suffer more practical distortions, such as poor audio recording, issues with handwriting, meaning being wrongly translated, or having no direct equivalent for explanations between languages. It is perhaps unsurprising then that alongside discussions of representation in academic research exist discussions of the antithesis: (mis)representation (Moosa 2013). This crisis of representation (Denzin and Lincoln 2005) calls into question the accepted qualitative wisdom concerning truth, method, and representation. For instance, Moosa (2013), reflecting on her educational qualitative research in a small community, felt her ability to accurately represent her participants was impacted by time constraints to complete her thesis. Time in qualitative research is in itself a whole issue which could constitute a debate of its own (see Silverio et al. 2020b), but suffice to say, time is a major pressure working against perfectionism of all forms in qualitative research, including accurate representation of participants. Contemporary acts of representation have often involved representation through authorship. This has become a key emerging debate for academics considering the inclusion of research participants as authors. While some authors have included the names of participants as authors in their texts, for instance Kellett et al. (2004), where Ruth Forrest, Naomi Dent, and Simon Ward (all aged 10) are named as coauthors, and Tomm’s (1992) article, which names three of this therapy clients Cynthia, Andrew, and Vanessa as coauthors, this is far from the norm in academic research and publishing. Benwell et al. (2020) hoped to include “Volunteers at KCC Live Community Radio Station” in the list of authors for their recent publication, yet this was not included in the final print due to the online manuscript submission portal requiring input of author

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first and last names and affiliations. However, collaborative groups are more welcomed in health sciences where it is not uncommon for long lists of authors to be followed by, or abbreviated to, a study consortium name, although this is not without its problems (see Thelwall 2020). Indeed, the disciplines which straddle both health and social sciences (e.g., Public Health, Psychology, Psychiatry, etc.), and work in a more cross-disciplinary way, appear to be ahead of the curve when it comes to participant, public, and patient representation on academic articles, with recent examples of meta-representation being published. That is, academics and participants coauthoring guidance on how best to represent participants in research (see Fernandez Turienzo et al. 2021; Rose and Kalathil 2019). This could be, at least in part, to the world’s first – and to date, only – Professor of User-Led Research (Prof. Diana Rose, herself a service user and academic), being appointed at the renowned interdisciplinary Institute of Psychiatry (now known as the Institute of Psychiatry, Psychology and Neuroscience, King’s College London). Arguably, listing participants as authors is an area of tension, particularly regarding participant’s responsibilities for the integrity of article content. Recent advances have seen guidance published on what constitutes authorship versus what would require acknowledgment. For example, the International Committee of Medical Journal Editors (ICMJE 1997) make the distinction between those who should be named as authors and those who should be named in the acknowledgments clear. They state that all authors should meet criteria for substantial contribution to study design, analysis, and interpretation of data, drafting the article, and approving the final manuscript, with collaborators not meeting all three criteria only being considered for acknowledgment. Furthermore, new thinking has aimed to ensure transparency of contribution, notably with the uptake by many biomedical journals of the “Contributor Role Taxonomy” (CRediT; Allen et al. 2019), which discusses contributorship comprising 14 different aspects, including conceptualization, funding acquisition, formal analysis, and project administration, as well as drafting and editing the manuscript. This has led to the following, commonly permissible rules: First author is unanimously accepted as being the person who led the research project and drafted the first iteration of the manuscript. The corresponding author is usually this same (first) author, or in the case of this person being a junior researcher with a fixed-term contract (and, therefore, likely to move institutions regularly or soon after the project has completed) is usually assigned to the most senior author on the paper. Where disciplines differ is on this idea of “senior” authorship. For the health sciences, the last author position is coveted for its association with “senior” author status (usually reserved for head of a research group, laboratory, department, or in the case of a cross-institution or cross-departmental collaboration, the person who supervised the project and those working on it). In the social sciences, no such attribution of “senior” authorship exists, and the next most important place on a paper authorship lineup is second author, with order of authorship usually aligned with contribution, from most to least. We must, therefore, be judicious with who is included as an author on manuscripts, to avoid gratuitous authorship. One such example is where Physicist Jack H. Hetherington, having been advised by a colleague that his paper would be rejected from Physical Review Letters for being written in first-person

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plural, despite being single-authored, added a second author: F. D. C. Willard or Felis Domesticus Chester Willard – his Siamese cat, to avoid rewriting the manuscript (see Hetherington and Willard 1975). Thus, while researchers must ensure that authorship has not been fabricated as so to imply participants were represented at all stages of the research, nor should authorship be promised or “gifted” as a way of maintaining engagement, smoothing relationships, or rewarding participants who take part in research (Street et al. 2010). Herein, we argue representing participants in academic writing requires more thought and consideration. This is particularly so when considering Mauthner and Doucet’s (1998) argument that the voices and perspectives of research participants which can become vulnerable during the data analysis stage. Participant voices can often be at risk of being lost or subsumed within the (often fixed and inflexible) worldview a researcher has developed, or the theoretical framework, philosophical stances, or methodological categories they draw upon throughout their research endeavors (Annells 1996). This has previously been discussed elsewhere, in terms of the difficult but necessary part of silencing one’s own voice during data analysis in order to hear the voices which are not the participants’ voices (see Silverio 2018b). Interpreting and reporting data, where participant voices are not represented or visible, can raise serious ethical considerations. The question, then, arises about what constitutes authentic representation (Foster 2009). For example, Robinson (2017) uses an auto-ethnographic approach through poetry to represent the voice of himself: a gifted, black male with dyslexia. This auto-ethnographic approach, Robinson (2017) argues, not only epitomizes his voice, but also enables him to become conscious of identity development. Interestingly, we may argue, that as an auto-ethnographic piece, the author has complete control over the representation of his own voice, which arguably could be shaped, curated, and represented in its most desirable form, through processes of reflexivity, iterative analysis, reflective practice, and the constant writing and editing processes associated with auto-ethnographic writing. Our participants are not afforded this same control. Academic researchers dominate the interpretation and dissemination stages of research (Pickering and Kara 2017). We confront decisions which have the power to reassert domination over the groups we study, thus providing the opportunity for the researcher to act as the academic ventriloquist and present the voice they have curated – further distancing the results of the research from the participants from whom they came. The academic ventriloquist will do this by ruling on how best to appropriately represent the participants and maintain proper respect, even if the findings do not portray participants in a positive way. Moreover, academics may also be troubled with the questions of whether they are obligated to cast their participants in a positive light (Swauger 2011). Though, researchers must not succumb to paralysis when attempting to represent their participants in research (Currier 2011), but write a representation based on ethics, empirical, and methodical analyzes, and rigor. Additionally, where authentic representations may be too exposing for participants engaged in research, it has long been recommended for qualitative researchers to engage in “memo-writing,” a practice of note-taking through data collection and analysis stages and/or diarizing their thoughts and feelings in relation to their

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participants and the data throughout the study. Nowadays, it is increasingly more common to see more personal reflections and representations of participants and their data published as edited monographs (see Kruger 2020; Tomlin 2017; Viviani 2016). This provides the academic ventriloquist the opportunity to write a manuscript based on the accurate representation of participant data, but also to document a more interoceptive account of their perception of the data and the participants who took part. On reading such a publication, audiences may find there is almost no representation of the participant data, but rather what appears to read like the personal annotations, affectations, and notes given almost exclusively, if not entirely, by the academic ventriloquist themselves.

2.3

Anonymity

Participants often engage in research on the understanding they will not be identifiable when the results are published, which allows for a situation where their experiences can be shared without fear of repercussion of exposure. Ensuring participants’ anonymity, therefore, is an important part of ethical research practice (Grinyer 2009), yet remains a practical challenge for academic researchers (Saunders et al. 2015). While it is widely accepted revealing names of participants would compromise anonymity (Trell et al. 2014), this comes with the assumption that all participants wish to be anonymized in the first place. Certain authors (e.g., Pymer 2011; Wiles et al. 2012) have acknowledged participants sometimes wish to be named, in order for participation to be acknowledged and for the ties between the participant, their experiences, and the research to be cemented. For these participants, there is satisfaction and pride to be gained from the identification, and apparent fame (see Wilkinson and Wilkinson 2017), associated with being named in written work. Here, tensions between respect, voice, and protection of identity come into play (Wiles et al. 2012). This is something Owen (2018) reflects in his paper titled “Fred, I’m not going to force you to have a pseudonym,” where Owen was challenged by the ethical dilemma of participants not wanting to be anonymized in their co-performance event which concluded the research. The question here is not only about anonymity, but also agency. Research practices have come a long way from the paternalistic styles of the mid-twentieth century. However, some aspects of research strip away participant agency, in return for concrete research ethics, rendering the idea of anonymous participants positive, but at the expense of participants will or want when it comes to being identifiable in research output. This is something Lahman et al. (2015) discuss as a delicate balance between confidentiality and anonymity and recognition for the participant engaging in the research. In practice, what this means in qualitative research is that researchers must ensure the source of the data is not revealed (anonymity), the content of the data collection exchange is protected (confidentiality), but that the participants contribution is documented using a pseudonym, which should be chosen by or agreed with the participants themselves (recognition).

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Research with participants – especially qualitative research – is, therefore, all about negotiation. The negotiation over participation; the negotiation over where and when the data collection will happen; negotiation over how much data the participant will provide, through carefully crafted and timed questions; and negotiation over whether or not the participant will be identifiable in the final disseminated results and publications. Many researchers will allocate a participant a pseudonym, and there have been moves to encourage pseudo-anonymization to move away from the practice of numbering participants which can be dehumanizing or even demeaning, for instance simply reducing participants to a numerical identifier. This is not always well received by readers, or, in fact, journals and peer reviewers, who often endorse pseudo-anonymization (see Chatfield 2018) as a way to engage the readers in data which appears more human when it is attributed to someone, albeit anonymized. The question of anonymization is complex and further complicated by the balance between good research ethics and the desires of participants. The practice of researchers naming participants respectfully in research projects has garnered attention more recently, with Allen and Wiles (2016) finding rules and customs surrounding naming participants relate to issues of power and voice, meaning researcher-led naming may not be the way forward for good research practice. Meanwhile, Edwards (2020) argues that (pseudo)naming practice has reflected a trajectory towards an intimate rather than neutral research relationship, with the use of personal names able to convey a sense of closeness to the particular participant by researchers. This is, however, not without its issues. Wilkinson and Wilkinson (2017) reflect on research where participants were dismayed and even distressed about the choice of name the author had allocated them, feeling it was a mismatch with their identity (for instance, their assigned name being old-fashioned). One way to attempt to remedy the loss of ownership over a participant’s words and ideas, while retaining anonymity, is to allow participants to choose their own pseudonyms. This is an approach certain researchers have taken, mostly in research with children (Moorefield-Lang 2010) and young people (Wilkinson 2015), but also in research with older childless people (Allen and Wiles 2016). The issue here is that participantchosen pseudonyms tend to be reminiscent of something close to the participant themselves. For example, in Allen and Wiles’ (2016) exploration of how to choose pseudonyms, the participants suggested names ranging from their mother’s name to their own or their partner’s middle name, with one participant refusing to offer a pseudonym, insisting their name was common enough not to be identifiable. The praxis of pseudo-anonymization as led by participants themselves, then, is flawed, as anonymity is not fully preserved. The problem here arises where ethical practices meet participant opinion, and occasionally, despite researchers’ concerted efforts to protect the identity of their participants, the participants themselves find the anonymity an injustice. For the academic ventriloquist, these confrontations offer both an opportunity and a threat. The opportunity arises from the ability to anonymize participants and therefore obscure the origin of the data. Anonymous participants, identified only by numbers or pseudonyms chosen by the academic ventriloquist, means that even participants may doubt whether selected quotations came from them. The smokescreen that

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academic ventriloquists can create provides the perfect opportunity to misdirect readers, by throwing their own voice behind pseudonyms. However, participants not wishing to be pseudo-anonymized or fully anonymized, pose a threat to the academic ventriloquist, as their ability to obscure and obfuscate the origin of the data is taken from them. Participants who wish to be identified prevent any opportunity for the academic ventriloquist to deliver anything but the participants’ own voice, and will undoubtedly challenge any version of the voice they do not recognize as their own.

3

Conclusion and Future Directions

Inclusion, representation, and anonymity are fundamental concepts in research, which academics need to understand, practice, and be able to demonstrate in their work. As research practices become increasingly fast-paced and the time allocated to studies – especially those which are qualitative in nature – becomes increasingly compressed (Silverio et al. 2020b), we must ensure that participants’ identities are protected by good research ethics, but participants are accurately and faithfully reflected in our outputs. We can achieve this through engagement with participant groups and ensuring they are included at all stages of research, while offering opportunities for representation, where possible and appropriate. The “No Known Benefits” doctrine is no longer permissible in qualitative research which, by nature, is time consuming for the participant as well as the researcher. There are other ways in which benefits of participating in qualitative research can outweigh risks to participants (see Opsal et al. 2016 for more on this debate). For instance, by having appropriate inclusion and accurate representation at all stages of the research, while ensuring that anonymity is negotiated and agreed upfront in a “contract” between the participant and the researcher, prior to the commencement of data collection. With the increasing intimacy of qualitative research spaces (Edwards 2020), and with researchers evermore occupying spaces which fall in-between the objective outside researcher sphere and the subjective inside participant domain (Corbin Dwyer and Buckle 2009; Rose 2019; Silverio 2018a), it is important to rein in the practices to ensure we avoid opportunity for the academic ventriloquist to not only exist, but to act. In this chapter, we have coined and introduced the concept of the academic ventriloquist and academic ventriloquism as a dangerous research practice. We explain this concept as a way in which authors in much published academic research can opt to throw their voices, creating the illusion that their voice is coming from participants, when in fact it is coming from elsewhere (for instance the researcher themselves, and also influenced by peer reviewers, journal requirements, funding bodies, and so on). Although work has been done to create a more inclusive space for research participants, for instance, through participatory research agendas and guidance and recommendations on representation, academic researchers maintain authority and power when analyzing data, interpreting meaning, and writing up. Thus, the opportunity for the academic ventriloquist to obscure the origin or meaning of

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participants’ data is still very much possible. We write this as three primarily qualitative researchers ourselves, and not to criticize all published qualitative work which has come before, but to highlight the poor research practices which can occur when researchers are not held to account for their inclusionary practices or representativeness throughout their studies. This chapter has highlighted three key areas requiring attention by academic researchers when doing and writing up qualitative research: inclusion, representation, and anonymity. As demonstrated throughout this chapter, these areas are not inseparable, but are overlapping, while somewhat in conflict with one another. Inclusion may lead to redaction of data, which in turn may make findings less representative, while representation may lead to compromising anonymity, and anonymity may reduce the ability to faithfully include and accurately represent participants in research. A fine balance is required of all three concepts, but when struck these fundamental research practices are a good base from which to fend off the academic ventriloquist tendencies, which may be found in us all. The chapter is closed by offering recommendations for promoting and making audible participants’ voices in text, while staving off the academic ventriloquist tendency: 1. Engage with, and include members of the population you wish to study in all aspects of your research design, by working with them on a PPIE group to shape your research, and remunerating their time and/or travel accordingly 2. Provide opportunities for participant co-research and coauthorship, where appropriate 3. Set contracts with participants on levels of anonymization and pseudonyms, where appropriate and possible 4. Keep field notes during data collection and make memos during analysis to ensure contextual matter is recorded, which may help you make more informed decisions over representation of data 5. Exercise reflexivity over the extent to which your voice is dominant when writing up research, and where possible turn to established research practices (e.g., bracketing) to exclude it Implementing these recommendations should seek not only to raise ethical standards in qualitative research, but should do so in ways which are impactful and meaningful to participants.

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Street, J. M., Rogers, W. A., Israel, M., & Braunack Mayer, A. J. (2010). Credit where credit is due? Regulation, research integrity and the attribution of authorship in the health sciences. Social Science & Medicine, 70(9), 1458 1465. Swauger, M. (2011). Afterword: The ethics of risk, power, and representation. Qualitative Sociol ogy, 34(3), 497. Thelwall, M. (2020). Large publishing consortia produce higher citation impact research but coauthor contributions are hard to evaluate. Quantitative Science Studies, 1(1), 290 302. Thomas, D. R. (2017). Feedback from research participants: Are member checks useful in quali tative research? Qualitative Research in Psychology, 14(1), 23 41. Thomas, W. I., & Znaniecki, F. (1996). The Polish peasant in Europe and America: A classic work in immigration history. E. Zaretsky (Ed.). Champaign: University of Illinois Press. (Original work published in 1920). Tomlin, D. (2017). Tales from the embassy: Communiqués from the guild of transcultural studies, 1976 1991. London, UK: Strange Attractor Press. Tomm, K. [as Karl, Cynthia, Andrew and Vanessa]. (1992). Therapeutic distinctions in an on going therapy. In S. McNamee & K. J. Gergen (Eds.) Therapy as social construction (pp. 116 135). London, UK: SAGE. Trell, E., Hoven, B. V., & Huigen, P. P. P. (2014). ‘In summer we go and drink at the lake’: Young men and the geographies of alcohol and drinking in rural Estonia. Children’s Geographies, 12(4), 447 463. Tufford, L., & Newman, P. (2012). Bracketing in qualitative research. Qualitative Social Work, 11(1), 80 96. Viviani, F. (2016). In prima persona. Orientamento sessuale e contesto sociale: Una lettura in chiave narrativa. Turin: L’Harmattan. Wainrib, B. R. (Ed.). (1992). Gender issues across the life cycle. New York: Springer Publishing. Wiles, R., Coffey, A., Robinson, J., & Heath, S. (2012). Anonymisation and visual images: Issues of respect, ‘voice’ and protection. International Journal of Social Research Methodology, 15(1), 41 53. Wilkinson, C. (2015). Connecting communities through youth led radio. Unpublished doctoral thesis, University of Liverpool, Liverpool. Wilkinson, C., & Wilkinson, S. (2017). Doing it write: Representation and responsibility in writing up participatory research involving young people. Social Inclusion, 5(3), 219 227. Worth, N., & Hardill, I. (Eds.). (2015). Researching the lifecourse: Critical reflections from the social sciences. Bristol: Policy Press.

Part III Social Inclusion and Social Exclusion: Population Groups, Lived Experiences, and Issues

Towards a Real Social Inclusion for Indigenous Australians

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Recent History of Indigenous Poverty, Social Exclusion, and Social Inclusion . . . . . . . . . . . 3 The Need for an Indigenous Specific Form of Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Towards a Real Social Inclusion of Indigenous Australians . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Indigenous Australians are among of the most disadvantaged people in Australia. The origins of this disadvantage is the processes of social exclusion embodied in colonization and the original act of dispossession. This chapter revisits the 1975 Henderson Report on Australian Poverty and demonstrates that Indigenous poverty has not improved substantially relative to non-Indigenous poverty since the 1970s. The social exclusion literature that emerged since that time emphasizes that income poverty is a relatively static outcomes and policymakers need to understand the multidimensional dynamic processes that evolve and keep “poor people poor.” Discrimination plays a crucial role in reinforcing cumulative disadvantage and policy needs to explicitly recognize the role of both conscious and unconscious bias in social exclusion of Indigenous Australians. Henderson’s report was an honest attempt to think critically consider the causes of the Indigenous disadvantage, but it was focusing more on social exclusion from the mainstream Australian society

D. Foley (*) Faculty of Business Government and Law, The University of Canberra, Canberra, ACT, Australia e mail: [email protected] B. Hunter Centre for Social Research Methods, The Australian National University, Canberra, ACT, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_33

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rather than asking the more radical question, what is it that Indigenous people are being included in? Any social inclusion agenda must recognize the legitimacy of cultural difference and “decenter” the received norms established by non-Indigenous institutions. This involves explicit recognition of the notion of group or collective Indigenous rights seriously (not just allude to the Mabo High Court decision). This chapter presents some data that illustrates that self-determination, in the form of the ability to live on and access ancestral land, has positive effects on Indigenous health over and above the impacts of the processes of social exclusion. Keywords

Poverty · Social exclusion · Social inclusion · Self-determination · Indigenous Australian

1

Introduction

Indigenous Australians are among of the most disadvantaged people in Australia. Hunter (1999) argued the nature and extent of Indigenous poverty was so distinct from other Australian poverty that it constituted a separate category of poverty. The title of that paper, “Three Nations, Not One,” was an illusion to the Benjamin Disraeli’s “Two Nations” which characterized the chasm between rich and poor in Victorian England. The main argument in Hunter (1999) was that Indigenous poor are so different from other Australian poor in that money alone was not sufficient to lift Indigenous people from material deprivation and social exclusion. Even relatively wealthy Indigenous households experienced a number socioeconomic disadvantages usually associated with poverty. The history of the unique nature of Indigenous impoverishment and deprivation had its origins in the original act of dispossession and colonization (Pollard 1988). Marshall Sahlins (1972) describes precolonial Indigenous Nations as having a higher material well-being than agricultural societies of the period or even societies in the early stages of the industrial revolution. Indeed, the title of Chapter 1 in Sahlins’ book is “The Original Affluent Society.” The idyllic situation described by Sahlins was disrupted by disease, frontier violence, and a colonial political process that systematically marginalized Indigenous people. Colonization in Australia has been characterized as genocide or “the elimination of the native” (Wolfe 2006). The process of colonization was truly brutal and resulted in many deaths, as well as economic and social exclusion from the society that emerged from the process. The case for using the word genocide is almost inescapable if genocide is defined using 1948 UN Convention on the Prevention and Punishment of the Crime of Genocide, Article II: In the present convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial, or religious group, as such: • Killing members of the group • Causing serious bodily or mental harm to members of the group • Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part

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• Imposing measures intended to prevent births within the group • Forcibly transferring children of the group to another group

Colonial Frontier Massacres project, based in the University of Newcastle, documents the brutality of the colonization process that displaced Indigenous people from their traditional lands. The Australian Research Council (ARC)-funded research now details the deaths of 8,400 people in 311 massacres between 1788 and 1930, with the vast majority of victims Aboriginal or Torres Strait Islander people (DP140100399; see Ryan et al. 2020). A preliminary analysis of the data indicates that agents of the colonies were involved in at least 50% of the massacres. However, the economic interests of the colonists and the settler state were often in direct conflict with preexisting Indigenous ownership of the land. Accordingly, it is not surprising that colonial history involved attempts to appropriate land and to legitimize nonindigenous claims by marginalizing Indigenous language and culture. The misapprehension and misunderstanding of Indigenous people and culture are likely to be an ongoing legacy of colonization that may be reflected in discriminatory behavior and attitudes among non-Indigenous peoples. If colonial processes are reflected in contemporary outcomes, then a process of decolonization is required. This chapter argues that a substantive form of social inclusion is required before Indigenous disadvantage can be effectively addressed. This requires Indigenous input into the design, conduct and evaluation of programs that deliver services to Indigenous people. Local knowledge and culturally appropriate services are key to ensuring that uptake of effective welfare programs that lead to positive and constructive behavioral change. In order to make the case for a substantive social inclusion of Indigenous people in the Australian society and economy, the chapter first need to outline the recent history of Indigenous poverty to gain insight into the ongoing relationship between Indigenous disadvantage, social exclusion, and social inclusion. It also allows us to articulate the need to move towards a true social inclusion for Indigenous Australians based on an acknowledgment of the original ownership of the continent. That is, policy should not just aspire to the inclusion of Indigenous people in a society dominated by legacy of colonization, but a radical revisiting of the relationship between Australian society and the first peoples. Reconciliation attempted to work at an individual or social level, but the historical reconciliation and recent policy have been limited or bounded to “closing the gap.” The chapter explains that it is now time for a radically reimagined Australia that reconstructs relationships at a social, political, and economic level. In the context of this book on social inclusion and health, achieving a broader social inclusion has a very practical dimension in the confidence of the Indigenous ability to shape programs and Indigenous futures will increase the efficacy of health and welfare programs.

2

Recent History of Indigenous Poverty, Social Exclusion, and Social Inclusion

The National Inquiry into Poverty in Australia, also known as the Henderson Report 1975, represents a foundational moment in the measurement of Australian poverty with the first credible measures of Indigenous income poverty. Henderson’s

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recommendations also presaged the literature of both social exclusion and social inclusion by acknowledging the existence of historical and social barriers that required broader policy responses from governments. Henderson’s main reports canvassed self-determination for Indigenous peoples and a redesign of service delivery to ensure that First Nations peoples got access to the services they needed and wanted in a timely fashion. This book coheres around the ideal of an inclusive society where each individual can feel valued, differences between individuals are respected, needs of each person are met, and everyone can live with dignity is “the norm.” Of course, there is no singular form as to what constitutes dignity for individuals or groups. Social inclusion involves particular challenges in the context of Indigenous Australia as this norm is currently defined with reference to colonial history. It is easier to pay lip service to the aspiration of inclusion than it is to realize substantive social inclusion (Altman and Hunter 1998), given that the state and main political actors have their power derived from a political system that evolved from the dispossession of Indigenous Australians. Community participation and interpersonal connections’ dynamics which accommodate access to positive relationships, resources, and institutions can lead to social inclusion, but the broader political and historical context needs to be acknowledged and reformed. The Uluru Statement from the Heart identified the importance to “seek a Makarrata Commission to supervise a process of agreement-making between governments and First Nations and truth-telling about our history” (https://fromtheheart. com.au/uluru-statement/the-statement/). This advocates a path to a sustainable reconciliation based on truth and social justice but is a necessary rather than a sufficient condition for social inclusion to take place. While structural features of Indigenous disadvantage need to be changed, Indigenous agency in the political system and the delivery of services is crucial if real social inclusion were to be achieved. Instead of replicating policy based on Western or non-Indigenous theory and evidence, more Indigenous involvement is needed in research, policy formulation, and service delivery. Indigenous researchers may choose to explore alternative measures of poverty using Indigenous epistemologies and ontologies to include specific Indigenous indicators of well-being. Indeed, such arguments resonate with some of the more radical sentiment expressed in the Henderson report including the notional support for Indigenous self-determination and service delivery (Sackville 1975, recommendation 18, p. 287; Killington 1977). There is reason to believe that services delivered in a manner that Indigenous people relate to will have higher take-up rates and be more successful in achieving outcomes that may redress the underlying disadvantage (Hunter and Venn 2019). The National Inquiry into Poverty in Australia provided the first credible examination of Indigenous income poverty and hence allowed policymakers to glimpse the nature and extent of Indigenous disadvantage. Henderson’s Indigenous-specific recommendations also presaged the emerging literature of social exclusion and social inclusion as the report acknowledged the existence of barriers that required a broader policy perspectives that included appeals for self-determination; affirmative employment strategies; community-based service delivery (including

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housing associations); culturally appropriate vocational training schemes that incorporated some “mentoring”; and the need to support self-employment. The promising rhetoric of Henderson and Whitlam government eventually gave way to a narrowing of the policy focus on mainstream priorities and closing the gaps in outcomes identified by governments. Some of this narrowing had its origins in the limited concept of poverty for many people. Poverty is a generic term used to encapsulate disadvantage in literature, however in reality, the term can refer to a number of definitions or phenomenon. Many, or even most, definitions rely on income that is rendered comparable to other households using equivalence scales. Some people use the term poverty in absolute sense defined as having access to the basic necessities, while others think of poverty relative to an income line defined by relative to the overall income distribution of a group or society. Relative poverty is associated with a societal inequality of oncome. To others, poverty refers to deprivation or to people who do not have enough to live a modest but comfortable life (according to some set of socially agreed norms or budget standards). Amartya Sen (1999) reformulated poverty in terms of capability (including the right to needs if they value it). The term “poverty” is more than just a technical term, carries with it an implication and a moral imperative that something should be done about it. While income inadequacy and material deprivation are important, the concept of social exclusion arose in the 1970s and 1980s out of dissatisfaction with the concept of poverty. It emerged out of at least two distinct concerns (Hunter and Jordan 2010). The first related to debates about particular types of disadvantage that were not captured by measures of income poverty (such as mental illness, physical disability, and long-term unemployment), and the inadequacy of the welfare state in dealing with such challenges (often associated with the French literature Silver 1994; Levitas 2006). The second concern related to the adequacy of standard measures of poverty for capturing the multifaceted nature of the disadvantages experienced by the less well-off. (Peter Saunders (2008: 10) characterizes these two concerns respectively as a “social exclusion approach” and a “deprivation approach,” but the latter concern continues to inform much of the literature on social exclusion.) This latter concern grew from the work of British sociologist Peter Townsend who argued that poverty was not only about subsistence but also about the ability of individuals to participate in the normal activities enjoyed by the majority of society (2010). The public debate improved from dry debates about poverty, measured either in terms of income, consumption, or expenditure, towards discussion about analyses of multiple disadvantages. These concerns were captured in the notion of social exclusion that focuses on the processes that create and entrench disadvantage over time, including ongoing disparities in economic and sociopolitical resources. Problems of conventional poverty measurement have been particularly pronounced for Indigenous Australians, whose circumstances are sometimes so different to those of other Australians that standard metrics for measuring poverty may be of little use. For example, Indigenous households often involve extended kinship networks that have no direct analogy with the nuclear family used in most poverty studies. Ideas about what constitutes poverty are also notoriously variable across different cultural

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groups. In promising to broaden the debate about disadvantage away from mainstream measures, the concept of social exclusion opened the door to a more culturally nuanced approach. In practice, operationalizing the concept of social exclusion has often entailed normative judgments about what constitutes poverty and what constitutes a “good society.” Some definitions of social exclusion make this reliance on a mainstream norm explicit, but it is that reliance which could be particularly problematic in the context of Indigenous Australia. The social exclusion literature emerged because it is widely recognized that income poverty is a relatively static outcomes and policymakers need to understand the multidimensional dynamic processes that evolve and keep “poor people poor.” The historical focus on income poverty ignored the evolution of disadvantage over time and abstracted from the processes that reinforce the disadvantage that make it particularly difficult to improve the circumstances of particular groups such as Indigenous Australians. These processes may or may not be structural, but they involve exclusion from multiple aspects of society, but most commonly argue to entail exclusion from social, political, and economic life. Furthermore, these processes accumulate over time and have been characterised as involving cumulative causation. Discrimination plays a crucial role in reinforcing cumulative disadvantage and policy needs to explicitly recognize the role of both conscious and unconscious bias in social exclusion of Indigenous Australians. Discrimination, like social exclusion, can manifest itself in multiple domains simultaneously (Biddle et al. 2013). The experience of discrimination happens to Indigenous people in every aspect of life: education, the law, commerce, workplaces, and so on. Not only is the social exclusion of Indigenous Australians seemingly intractable or a “wicked problem” (Hunter 2007b), it is often driven by discrimination. Furthermore, the discrimination responsible for this social exclusion may result from an unconscious bias on the part of the discriminator, which is arguably makes the phenomenon more difficult to deal with from a policy perspective. Discrimination can directly affect economic and social opportunities or outcomes (structural factors) or shape the choices that can be made (Indigenous agency). Unconscious bias can be measured in the Implicit Association Test relating specifically to Indigenous Australians that has been collected for more than a decade (Shirodkar 2019). Shirodkar shows that 75% of Australian participants hold an implicit bias against Indigenous Australians, which may affect many of the interactions between Indigenous and other Australians. Irrespective of whether the discrimination is conscious of unconscious, it shapes the social and economic ecology shaping Indigenous outcomes in Australian society (Foley and Hunter 2016). However, as Henderson was aware, there was a need for Indigenous self-determination to address Indigenous disadvantage. It gets down to what sort of society Indigenous people want to be included in. Or stated another way, what is idea of dignity that policy should aspire to actualize and might lead to fulfilled Indigenous lives in an inclusive society. An important element is likely to involve Indigenous control over Indigenous futures and the freedom to live in a manner consistent with an Indigenous world view.

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The Need for an Indigenous-Specific Form of Social Inclusion

The social determinants of health are the circumstances in which people are born, grow up, live, work, and age, and the systems put in place to deal with illness. These circumstances are in turn shaped by a wider set of forces: economics, social policies, and politics (Marmot and Wilkinson 2006). Hunter (1999) identified that Indigenous poverty was more prevalent and deeper than that observed in the rest of the population. This section provides a graphic illustration of the existence of Indigenous social exclusion in the context of health outcomes. Many studies of Indigenous social exclusion demonstrate that multiple disadvantages simultaneously afflict Indigenous households and can accumulate over time (Hunter 2007a). One manifestation of this social exclusion is that seemingly well-off Indigenous households can experience relatively poor outcome in a range of socioeconomic outcome. However, by analyzing whether Indigenous Australians have access to traditional country and hence an important aspect of control over their life choices, we can demonstrate that the evidence of social exclusion depends on local conditions and the Indigenous agency in how wellbeing is realized. Stated another way, an Indigenous-specific form of social inclusion, which is highly valued by traditional owner, can have positive implications for Indigenous outcomes in health. Shepherd et al.’s (2012) comprehensive review of the evidence identifies that positive Indigenous health outcomes generally have a positive gradient with socioeconomic outcomes (including poverty and income). This in itself is not remarkable; in that it is a strong and consistent finding in the social determinants of health literature (Marmot and Wilkinson 2006). However, it is rather more surprising that Shepherd et al. felt unable to make strong assertions about the nature and strength of the SES–health relationship as there were a number of papers where there was either no association or a negative gradient. In our opinion, the conditionality of that analysis reflects that there is broader social exclusion process that may specifically affect Indigenous peoples. Shephard et al. define Indigenous communities and peoples in terms of historical continuity from before colonization and preservation and maintenance of their ancestral land and culture. The Macquarie Atlas of Indigenous Australia states a homeland is “an Indigenous person’s ancestral country” (Arthur and Morphy 2005, p. 262). Stanner’s (1968: 44) reflections help Westerners understand some of the background history to the term homeland. No English words are good enough to give a sense of the links between an Aboriginal group and its homeland. Our word ‘home’, warm and suggestive though it may be does not match the Aboriginal word that may mean ‘camp’, ‘hearth’ ‘country’, ‘everlasting home’, ‘totem place’, ‘life source’, ‘spirit centre’ and much else all in one.

Figure 1 reports the income gradients for fair or poor health status among Indigenous people aged over 15 year olds, conditioned on whether people live in homelands. Note that information on homelands is only collected in the 2008

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Remote not living in homeland

Non remote

Fraction of individuals >15yo who reported fair/poor health

0.35 0.3 0.25 0.2 0.15 0.1 0.05 0 quintile 1

quintile 2

quintile 3

quintile 4+5

Equivalised household income quintile (Australia)

Fig. 1 Income gradients for self assessed health status is fair or poor, Indigenous people aged 15 and over. (Notes: The “whiskers” around the mean are calculated with a bootstrap estimator of standard errors using the jackknife technique and represent the 95% confidence intervals for the estimator. The income quintiles for Australia are calculated using both Indigenous and non Indigenous income. Quintiles 4 and 5 are combined because there are still relatively few Indigenous people in the group which capture around 40% of the Australian population. Source: Authors’ calculations using the 2008 NATSISS)

National Aboriginal and Torres Strait Islander Social Survey (NATSISS) for remote areas. The income used in this study is equivalized using OECD scales that allow comparisons between Indigenous households of differing size and composition (see Hunter et al. 2004). Figure 1 illustrates an observable income gradient for the nonremote Indigenous population, but there is no significant gradient for either homelands or other remote areas. Among low-income households (in the bottom quintile), the homeland respondents are less likely to report fair or poor health than other remote respondents, who are in turn less likely to report this health status than nonremote respondents. Note that irrespective of the income of the household, the average homeland respondents are less likely to report fair or poor health than other remote respondents (and most nonremote respondents conditioned on household income), but the differences are not significant. It appears that living in remote areas is associated with better health outcome. Given that remoteness is often associated with relatively high-cost services and consumables, it may be that greater access to hunting, fishing, and gathering allows the remote residents to supplement income and provide a healthy diet. These observations are consistent with the hypothesis that living on ancestral country and having is associated with better health outcomes. The fact that these differences are only significant in the low-income households may be explained by

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the fact that income does facilitate the access to services that cost money, especially the cost of getting to where services are provided. Living on country may have positive effects on health and well-being irrespective of income, and the less access to homelands the more likely the person is to report fair or poor health – that is, low-income nonremote residents have the worst health outcomes. Furthermore, low income appears to be a binding constraint on accessing health services for people not living on homelands. While the income gradient is manifest in nonremote areas, even in remote nonhomeland areas, there is a significant difference between the top and bottom income groups in terms of the proportion reporting fair or poor health. The lack of an income gradient for health outcomes can either indicate income is not accounting for major sources of value for Indigenous Australians, the multidimensional nature of Indigenous disadvantage (or social exclusion), or both. In nonremote areas, the slope of the gradient is less than would be observed for other Australians, primarily from the high rates of health problems experienced by the high-income Indigenous households. This is indirect evidence for social exclusion among many Indigenous Australians. The lack of a social gradient in remote areas may reflect healthy lifestyle and hunting and gathering supplementing monetary income through what economists call household production. In our opinion, the relatively good health outcomes in low-income households living on homelands are due to the access to ancestral country and ability to engage in cultural practices that are distinctly Indigenous. It illustrates the need for a form of social inclusion that takes into account Indigenous-specific needs such as the need to live near ancestral country.

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Towards a Real Social Inclusion of Indigenous Australians

In our opinion, the structural features of Indigenous disadvantage need to be changed. Instead of replicating policy models based on Western or non-Indigenous theory and evidence, there is a need for more Indigenous involvement in research, policy formulation, and implementation. Indigenous researchers may choose to explore alternative measures of poverty using Indigenous epistemologies and ontologies to include specific Indigenous indicators of well-being. Indeed, such arguments resonate with some of the more radical sentiment expressed in the Henderson report including the notional support for Indigenous self-determination and service delivery (Sackville 1975, recommendation 18, p. 287; Killington 1977). There is reason to believe that services delivered in a manner that Indigenous people relate to will have higher take-up rates and be more successful in achieving outcomes that may redress the underlying disadvantage. Of course, there are nonmaterial, social, and cultural aspects of disadvantage that can affect well-being and the outcomes affected poverty. This led to the growth of social enterprises a way for neoliberalism governments to abrogate responsibility for providing essential services (Aimers and Walker 2015), thus compounding the accumulation of social exclusion experienced by Indigenous people.

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The reality of Indigenous disadvantage is that it is more than a lack of resources. Numerous studies have demonstrated the existence of multiple disadvantages for Indigenous people (Hunter and Venn 2019). Even the Productivity Commission’s (PC) Overcoming Indigenous Disadvantage (OID) Policy framework recognized the interaction between domains of disadvantage (or priority outcomes). The PC (2016) provided historical context of colonization and multiple disadvantages and the role of discrimination, but at its core the OID was about identifying change indicators albeit strategic in intent. The OID has failed to achieve its goals because these indicators are identified by agents of the state that are dominated by non-Indigenous voices and does not take into account what might work for Indigenous people, or indeed, what they want. Whatever the merits of those indicators, there is an inadequate understanding of what factors actually work in delivering Indigenous outcomes. If social inclusion is primarily based or predicated upon mainstream employment participation, the government can be accused of ignoring alternative aspects of economic livelihood, such as remote-living Indigenous peoples’ productive economic activity in the customary sector (Hunter and Jordan 2010). Furthermore, if the focus on paid work – combined with inadequate support for job creation where people want to live – forces people to move away from country and kinship networks, then important aspects of social inclusion may actually be undermined. Of course, no one would seriously argue against a future in which Indigenous Australians are as healthy lives as long and are as able to participate in the social and economic life of the nation as other Australians. And it is clear that many Indigenous people do want formal education and secure and properly remunerated jobs. But where policies for social inclusion are based on a predetermined, mainstream norm that precludes creative alternatives for economic participation and education, there is a conceptual slippage from arguing that Indigenous Australians should have the same “standards of living” as non-Indigenous Australians to arguing that Indigenous Australians “should be more like the mainstream.” After a decade of tabling reports in Federal Parliament, documenting the failure to “Close the Gap” in health inequality between Indigenous and other Australians, the Morrison government announced in 2019 a refresh of the policy. This refresh of the Close the Gap policy involves a process of Indigenous consultation and codesign via the Coalition of the Peaks (a representative body of about 40 Aboriginal and Torres Strait Islander organizations). This does indeed make for a refreshing change in Indigenous health policy, at least a substantive change from the recent past. Bond and Singh (2020) also argue that improvements in Indigenous health are unlikely come through refreshed numerical targets or simply providing greater financial investments in health research, even where the policy is informed by extensive consultation with Indigenous community. They argue that intellectual investment in Indigenous health needs to be broadened to invite various social scientific perspectives about the social world that Indigenous people occupy and its role in the production of illness and inequalities. In this way, the notion of race needs to be better understood and critically engaged with before we analyze the ways it matters to health outcomes (Bargallie 2020).

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Once the issue of race is explicitly raised, we need to have an adequate understanding of the nature and extent of discrimination. Shirodkar (2019) has demonstrated the unconscious bias is likely to be widespread and likely to affect all aspects of Australian society including research, policymaking, and evaluation and the delivery of health services. The process of decolonization starts with research to ensure that the understanding of the issues has a semblance of balance (Smith 1999). Indeed, this chapter is itself the result of a collaboration of an Indigenous and non-Indigenous people to facilitate a range of perspectives. This process of decolonization cannot just focus on identifying suitable targets for particular strategic indicators but needs to occur in the evaluation and delivery of Indigenous policy. The Productivity Commission’s Draft Indigenous Evaluation Strategy is an earnest attempt to include Indigenous voices in the process of evaluation and, hence, may ultimately lead to substantive change in the delivery of services. However, if it proves impossible to reconcile Indigenous and non-Indigenous worldviews for a “renewed” Indigenous evaluation process, in either theory or practice, then a decision needs to be made as to whose perspective should be privileged. All tax-funded processes need to accountable to the public, but in assessing what outcomes are aspired to, and whether a policy worked in achieving that outcome, the strategy would need to be framed by Indigenous worldviews if it is to be adequately decolonized. Bargallie (2020) uses Critical Race Theory to “unmask the racial contract” and to analyze racism in the public service. It also provides insight into the interaction between White racial privilege and Black racial disadvantage. Like other areas of Australian society, racism and unconscious bias are pervasive in the Australian Public Service. The failure to acknowledge the potential Indigenous knowledge available in the Indigenous public servants limits the ability to improve service delivery and outcomes for Indigenous people. Furthermore, if the full diversity of Indigenous perspectives and insights from Indigenous public servants were obtained, this would make a practical contribution to the development of Indigenous Evaluation Strategies to identify which programs will deliver the best outcomes for local Indigenous communities.

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Conclusion and Future Directions

After providing evidence on unique nature of Indigenous poverty and disadvantage, this chapter concludes with a radical proposal to enhance Indigenous social, economic, and political participation. Any social inclusion agenda must recognize the legitimacy of cultural difference and “decenter” the received norms established by non-Indigenous institutions. This may involve explicit recognition of the notion of group or collective rights seriously, not just allude to the Mabo High Court decision (Hunter and Jordan 2010). Social inclusion must be two-way process of social justice that cannot just focus on the “equality” of outcomes. Arguably, the constitutional recognition of Indigenous Australians is an essential part of achieving a real social inclusion.

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The history of the idea social inclusion demonstrates it is best understood as a process, rather than a single event with clear outcomes. Social inclusion does not have one goal or outcome but will evolve as societal processes develop or the relationship between Indigenous and non-Indigenous people changes. However, some policies and programs will be more inclusive of Indigenous people than other institutional arrangements. Identifying an adequate process for evaluation of Indigenous programs is important, but broader reforms to political institutions that allow Indigenous perspectives to be included in Australian public life are essential. Achieving a true social inclusion involves a fundamental revisiting of Australian society with respect to political and economic institutions. A Makarrata Commission, discussed in the Uluru Statement of the Heart, may be one constructive strategy for reimagining Australian political and economic relationships between Indigenous and non-Indigenous Australians. We would argue that direct support for Indigenous community and business enterprises are another practical step to achieving a real social inclusion. Indigenous business has grown substantially in recent years and they provide an active conduit between Indigenous communities and the broader societal economic processes (Hunter et al. 2019b). Many Indigenous businesses are grounded in the Indigenous community and are disproportionately likely to employ Indigenous workers. In delivering health and other services pertaining to strategic indicators, Indigenous businesses are likely to facilitate decolonization processes. If Indigenous enterprises do not already exist to deliver services to Indigenous clients, then some business support policies may be needed. One initiative introduced in 2015 is the Indigenous procurement policy (IPP) attempted to provide benefits to Indigenous peoples and their communities by encouraging investment in Indigenous businesses. Government departments and agencies were given targets to procure services through Indigenous businesses. Over $2 billion in contracts have been awarded through the IPP since the policy began and the recent growth of the Indigenous business sector has exceeded other Australian businesses by a considerable margin (Shirodkar et al. 2020). Policymakers need to avoid one-size-fits-all policies in Indigenous affairs and aspire to genuine consultation with Indigenous communities. If Indigenous citizens are to have a real influence in policy decisions, and policymakers effectively respond to local concerns, the institutions of the state need to be transformed (Hunter and Jordan 2010). Such a process requires a shift in focus from seeing social inclusion as a predetermined set of outcomes to seeing it as embodying a concern with political process and participation. Policies that address Indigenous aspirations may be entirely consistent with various governments’ stated goals, but it would be premature to think that we fully understand the multifaceted nature of Indigenous disadvantage. While more research is needed, what is abundantly clear is that as a first step we need a more open dialogue about “what are people to be included in,” “who decides,” and “how.” Social inclusion is an inherently normative concept that must take into account social justice, and policy needs to take into account the full diversity of Indigenous Australia if a true form of social inclusion is to be achieved (Hunter et al. 2019a).

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Sin How Lim, Mervyn Sim, Anne Yee, and Thomas E. Guadamuz

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Male to Male Sexualities in Asia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Population Size Estimate of MSM Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Stigma and Discrimination Among Men Who Have Sex with Men . . . . . . . . . . . . . . . . . . . . . 5 Impact of Stigma and Discrimination on Laws and Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Impact of Stigma and Discrimination on Access to HIV Services and Treatment . . . . . . . 7 Impact of Stigma and Discrimination at Workplace . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Impact of Stigma and Discrimination at Schools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 What Can Be Done Better to Reduce or Eradicate Stigma and Discrimination? . . . . . . . . 10 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Past research highlighted the negative impact of social exclusion, stigma, and discrimination towards men who have sex with men (MSM) in Asia. The bias and sexual prejudice are also enshrined in the penal code, social and employment policies. In Asia, same-sex sexual activities are still criminalized in many S. H. Lim (*) Department of Social and Preventive Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia e mail: [email protected] M. Sim Sentosa Hospital Kuching, Sarawak, Malaysia A. Yee Department of Psychological Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia e mail: [email protected] T. E. Guadamuz Department of Society and Health, Faculty of Social Sciences and Humanities, Mahidol University, Nakhon Pathom, Thailand © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_34

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countries but there is a shift in legislation to advance the rights of LGBT people. Globally, HIV treatment and prevention services for MSM remain critically under-resourced. Sexual stigma and criminalization of same-sex behaviors further hinder health-seeking behaviors, such as accessing HIV/STI and mental health services. LGBT employees in Asian countries generally have not received the same level of protection as compared to their Western counterparts but there are subtle changes to advance the LGBT worker rights in the region. There is also evidence that victimization in schools leads to psychological distress and trauma among adolescent and young MSM. Stigma reduction interventions must address structural-level barriers so that MSM can access health services without fear and discrimination. This chapter discusses how prejudice targeted towards MSM in Asia contributed to undesirable physical, psychological, and social consequences. Keywords

Stigma and discrimination · Gay and bisexual men · Homosexuality · Asia

1

Introduction

In the early emergence of HIV epidemic, cases of a rare form of cancer, known as Kaposi sarcoma, and a rare type of pneumonia were initially identified among young, sexually active gay men. Unknown about the source of the infectious disease, the disease was widely known as gay-related immune deficiency (Cantwell Jr 1998). Despite the current knowledge on the route of transmission of HIV, most societies still view homosexuality with a certain level of disdain and disgust (Parker and Aggleton 2003). Today, same-sex relations and behaviors still remain feared of, misunderstood, and rejected in many parts of the world. Historically, the 1969 Stonewall riot in New York City ignited the modern gay rights movement in the United States (Poindexter 1997). On June 27, 1969, during the routine raid by the police at Stonewall Inn, the patrons behaved in an unusually violent manner, retaliating to what they viewed as injustice against the gay community by authorities. Riots on the streets went on for the next 3 days and chants of “Gay Power” echoed throughout the neighborhood. This news spread quickly through mainstream media and marked the birth of modern gay rights movement in the United States. In 1973, homosexuality was no longer considered a kind of mental disorder when the American Psychiatric Association (APA) removed homosexuality from the Diagnostic and Statistical Manual of Mental Disorders (DSM) (Bayer 1987). Prior to this decision from the APA, homosexuality had always been a diagnostic entity and classified as a disorder since 1952 (Chauncey 1982). This decision signaled a dramatic shift as it paved the direction in how medicine, particularly mental health, viewed homosexuality. Prior to the shift of stance of APA on homosexuality, the word “homophobia” was coined by George Weinberg in his 1972 publication (Herek 2004). Weinberg

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challenged the previously ingrained belief that homosexuality is a “problem.” Furthermore, his views precipitated more scholarly analysis and interventions with regards to homosexuality. The fear of homosexuality is based on the notion that homosexuality poses as a threat to the maintenance of male gender roles in traditional societies (Brannon and David 1976). Most Asian countries fall behind the Western world with respect to the social and legal policies in protecting the human rights of sexual minorities. The AIDS epidemic has particularly accentuated stigma and discrimination against homosexual men in Asia (Blanc 2005). An understanding of homosexuality in Asia is crucial in reducing stigma and discrimination against gay men in this region. An antistigmatizing and nonhostile environment will contribute to better HIV prevention strategies, as well as, advocacy of sexual minorities’ rights.

2

Male-to-Male Sexualities in Asia

Human sexualities are known to be complex and constitutional. The interaction of nature (biology) and nurture (culture, social environment) is believed to influence psychosexual development, leading to diverse sexual orientation. The term sexual orientation comprises attraction, behavior, and identity (Dune and Liamputtong 2019). A sexual orientation that inclines emotionally and sexually to those of the same gender is commonly known as gay or homosexual (Troiden 1989). The terms, gay or homosexual, can be used regardless of gender identity, but more often than not, they are used to describe men (Troiden 1989). Those with predominantly samesex attractions represent only a minority of the adult population, comprising less than 5% based on both Western and non-Western surveys (Bailey et al. 2016). Homosexual practices and transgenderism have been documented throughout human history in many Asian cultures. The renowned Chinese sexologist, Ruan Fang Fu, stated in his book Sex in China (Ruan 2013): “Male homosexuality may have been a familiar feature in Chinese life in prehistoric times. . . China’s earliest historical records contain accounts of male homosexuality” (p. 107). Most of the earliest references to homosexuality in China referred to relationships between emperors or other rulers with eunuchs, “ravishing boys” or study mates (Leupp 1997). Men who have same-sex attractions were called “long yang” or “xiang gong” by the ancient Chinese (J. Wu 2003). Other common terms included “duan xiu” (cut sleeve) and “yu tao” (sharing the remaining peach) which also referred to same-sex relationships (J. Wu 2003). Similarly, in Japan, male homosexuality has a long tradition spanning back to at least one thousand years. Homosexual relationships have been documented in a variety of contexts, including the samurais, the kabuki theatre, and even within Buddhist monasteries. Back then, homosexuality was viewed simply as an erotic enjoyment with no exception to attraction for the opposite gender (McLelland 2005). LGBT, which stands for lesbian, gay, bisexual, and transgender, while commonly used, it does not exclusively represent those who are categorized as lesbian, gay, bisexual, or transgender, but instead refers to any individual who is

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“non-heterosexual or non-cisgender” (Shankle 2013), thus emphasizing a diversity of gender and sexuality (Ferentinos 2014). Ever since its initialism from the mid to late 1980s, “LGBT” has been widely used in replacement to the term “gay” (Towell and Sheppard 1986). In the parlance of public health professionals, “men who have sex with men” refers to an identity-free classification separating sexuality (homosexual) from behavior (anal intercourse between men) (Boellstorff 2011). MSM is, therefore, a public health term that encompasses all men who have sexual relations with other men, regardless of their sexual identity. This term appears to be less stigmatizing for men who wish not to be identified as “gay.” Indeed, some men do not want to identify as “gay,” “homosexual,” or “bisexual” even though they engage in sexual activities with other men, which present risks in HIV transmission. Individuals may choose to adopt or reject these labels for themselves for various reasons, such as perceptions of their personal sexual behaviors, social status, selfstigmatization, societal discrimination, community belonging, or religious and cultural implications (Troiden 1989). While some gay men are open about their sexuality to families and friends, and are actively advocating for gay rights, a vast majority still prefer to keep their sexual preferences to themselves. A significant proportion of men with same-sex attraction and/or behaviors remain “closeted,” hiding their sexual orientation, or choosing not to disclose their sexual orientation, from family, schools, workplace, community, and society.

3

Population Size Estimate of MSM Populations

There has not been any consensus regarding the best strategy to estimate the MSM population. The difficulty to enumerate a diverse group of men with different sexual orientations, gender and sexualities, and sexual practices presents a major challenge for research in LGBT health (Reisner et al. 2016). Moreover, these challenges are further compounded by societal stigma and discrimination towards homosexuality, and the lack of accurate instruments which could facilitate in enumerating men with health risks related to their sexual activities (Stahlman et al. 2016). As a consequence, MSM population size estimate remains implausibly low or absent in many parts of the world. Past research shows that a vast majority of the male population has, to a certain degree, homosexual experience in some phase of their life (Kinsey et al. 2003). Available data indicated that at least 37% of the male population has had some forms of same-sex sexual activities between their adolescent years and old age, and as high as 60% of preadolescent boys admitted to have engaged in same-sex sexual activities (Kinsey et al. 2003). In the same study, approximately 50% of males who remain unmarried until the age of 35 have encountered some form of same-sex sexual experience in the past (Kinsey et al. 2003). Therefore, same-sex sexual experiences are not necessarily tied to gender and sexual orientation identities, but instead can be a more fluid and dynamic process that may depend on certain situations and contexts.

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A multinational study (13 countries across 5 continents) estimated the population size of gay and bisexual men and other cisgender men who have sex with men (GBMSM) by collecting sexual behavior and sexual identity data via gay social media, Hornet Gay Social Network, and Facebook (Baral et al. 2018). Estimates obtained from this study were then compared with country-level national estimates as well as with the Joint United Nations Programme on HIV/AIDS (UNAIDS). The authors concluded that the number of GBMSM from the countries studied were significantly higher than from the estimates made by UNAIDS (Baral et al. 2018). Interestingly, Facebook estimates of GBMSM population demonstrated far greater consistency as compared to UNAIDS reported estimates across participating countries (Baral et al. 2018). Facebook estimates reported a total of 290,000 men in both Malaysia and Thailand, respectively, who categorized themselves as men who are interested in men (MIM) (Baral et al. 2018). Among users of Hornet Gay Social Network, the GBMSM population was estimated at 1,174,942 in Thailand and 311,472 in Malaysia (Baral et al. 2018).

4

Stigma and Discrimination Among Men Who Have Sex with Men

Stigma is conceptualized as processes of labeling, stereotyping, separating, and discriminating individuals or groups, based on distinguishing characteristics such as physical disabilities and mental disorders (Link and Phelan 2001). For sexual minorities individuals, stigma involves negative attitudes or discrimination used to ostracize them from the so-called “normalized” social order (Gilmore and Somerville 1994). Studies on stigma and discrimination towards MSM populations have been extensive. According to the theories of stigmatization, stigma has at least two facets, namely, enacted stigma and perceived stigma (Balaji et al. 2017; Corrigan et al. 2010). Enacted stigma comprises the unpleasant attitudes and reactions portrayed by the general public towards others who possess undesirable attributes such as identifying or perceiving to be gay, bisexual or a man who has sex with another men, or living with HIV (Balaji et al. 2017). Data from the 2011 National HIV Behavioral Surveillance system concluded that enacted stigma portrayed towards MSM increases their HIV-related risk behaviors (Balaji et al. 2017). Findings demonstrated that 32% of MSM had experienced verbal harassment, 23% encountered discrimination, and 8% were physically assaulted, in the past 12 months (Balaji et al. 2017). Furthermore, a greater vulnerability of disadvantaged populations such as MSM were reflected from correlations drawn between enacted stigma with homelessness, education, income, lack of health insurance, and incarceration (Arnold et al. 2014). On the other hand, self-perceived stigma refers to a process in which marginalized individuals become aware of public stigma, agrees with the stereotypical views of others towards them, and eventually internalizes these views by applying them to oneself (Corrigan et al. 2010). Acceptance and internalization of such derogatory and undermining views would lead to consequences in the form of low self-esteem,

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self-isolation, and social withdrawal (Mak et al. 2007). In addition to this, perceived stigma also contributes to negative consequences in an individual’s healthcare (Kinsler et al. 2007). This fear of stigma has deterred MSM from accessing HIV testing, and for some, disclosing their seropositive HIV status to intimate partners, families, and friends (Fortenberry et al. 2002). Furthermore, studies have found that those with higher levels of perceive stigma were more likely to be at risk for depression and HIV-related symptoms, including reduced adherence to HIV medications and poorer quality of life (Rintamaki et al. 2006). The minority stress model indicated that sexual minorities encountered stigma, internalized homophobia, and experiences of discrimination and violence (Meyer 1995). This model was constructed based on the assumption that sexual minorities are vulnerable to chronic stress as they live in a stigmatizing heterosexist society (Meyer 1995). Recent studies in Asia have confirmed this model. In Vietnam, high internalized, perceived, and enacted homosexuality stigma were reported among MSM in Hanoi (Ha et al. 2015; Hershow et al. 2018). In China, minority stress led to negative consequences to mental health and contributed to an increase in high risk behaviors among Chinese gay men (Xu et al. 2017). The interplay between these forms of stigma may lead to anxiety, depression, suicidal ideation and attempts among sexual minorities, including MSM (Hightow-Weidman et al. 2011). Moreover, homosexuality stigma is also a major obstacle preventing Chinese MSM from accessing available HIV prevention and treatment services (Wei et al. 2016). Other factors, such as gender, age, religious affiliations, education status, as well as intergroup contacts, may also play a role in influencing the societal attitudes towards sexual minorities (Slootmaeckers and Lievens 2014). It was reported that younger individuals and women were less homonegative, possessed more accepting attitudes, and were much more empathetic towards their homosexual peers, as compared to the older generation and to men (Slootmaeckers and Lievens 2014). Apart from this, those who obtained higher education and those who viewed religion as less central in their lives portrayed lower levels of homonegativity and were less judgmental (Slootmaeckers and Lievens 2014).

5

Impact of Stigma and Discrimination on Laws and Policies

The International Lesbian, Gay, Bisexual, Trans and Intersex Association (ILGA) reviewed the policies and the legal environments pertaining to countries that have laws forbidding homosexual acts between consenting adults (Mendos 2019). In 2019, 70 of 193 countries recognized by the United Nations criminalize same-sex sexual activities. In Asia, these countries include Afghanistan, Bangladesh, Bhutan, Brunei Darussalam, India, Iran, Kuwait, Lebanon, Malaysia, Maldives, Myanmar, Oman, Pakistan, Qatar, Saudi Arabia, Singapore, Sri Lanka, Syria, Turkmenistan, United Arab Emirates, Uzbekistan, and Yemen (Carroll and Mendos 2015). Punishments vary among these countries, ranging from fines to short-term or lifelong imprisonments, whippings, forced psychiatric treatment, societal banishment, and the death penalty (Mendos 2019).

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The World Values Survey, a large study of social values and attitudes from participants from Indonesia, Malaysia, the Philippines, Singapore, Thailand, and Vietnam, found that Southeast Asians demonstrated moderate to high levels of homonegativity (Manalastas et al. 2017). Homonegativity, also a synonym to homophobia and heterosexism, represents a system of negative attitudes, beliefs, and behaviors towards same-sex sexualities, gay men, and lesbians (Herek and McLemore 2013). Particularly, Indonesians (66%) and Malaysians (59%) appeared to possess the most homophobic attitudes towards LGBT individuals, as well as, least accepting for the idea of same-sex sexuality. The extent of homophobia was so severe that four out of ten Southeast Asians would reject having lesbians or gay men as their neighbors (Manalastas et al. 2017). Asian countries that were formerly colonized by the British, such as Bangladesh, India, Malaysia, Pakistan, and Singapore, have judicial system that uphold laws against same-sex activities (Carroll and Mendos 2015). For example, the judicial systems in both Malaysia and Singapore retained Section 377 of the penal code which criminalizes carnal intercourse against the order of nature with any man, woman, or animal (Offord 2011). Although this particular penal code specifically referred to sexual acts performed on both genders, as well as, bestiality, prosecutions were mainly targeted against men (West and Green 1997). Islamic Sharia laws have also been instated in several states in Malaysia, which apply specifically to the Muslim populations. The Sharia Penal law criminalizes homosexual acts with a punishment of up to 3 years imprisonment and whipping. In the Malaysian state of Penang, for example, sodomy (liwat) and lesbian relationships (musahaqat) are crimes punishable with fines of up to RM 5000 (USD 1240), 6 lashes of the whip, and 3 years imprisonment (Bruce-Jones and Itaborahy 2011). Once found guilty, one may be charged with a combination of all three penalties (Rashid and Hamid 2014). In Malaysia, Anwar Ibrahim, who served as Deputy Prime Minister from 1993 until 1998, was dismissed from office on allegations of corruption and of sodomy (QC 2015). India, on the other hand, has its own versions of Section 377. Violation of this 157-year-old colonial-era law could lead to imprisonment for 10 years (Offord 2011). However, in practice, very few LGBT Indians were ever prosecuted under this law. The law was used instead to abuse, bully, threaten the LGBT communities (Cousins 2019). In 2018, India’s Supreme Court ruled that same-sex sexual activities were no longer a criminal offence (Borah 2018). This landmark ruling legalized same-sex sexual activities of more than 100 million Indians. Since the decriminalization, experts have noticed that more MSM are accessing HIV screening and treatment (Cousins 2019). Interestingly in Indonesia, the national Penal Code does not prohibit same sex relationships, unless such sexual acts are committed with a minor (Bruce-Jones and Itaborahy 2011). Nevertheless, the country seems to have transitioned from its “LGBT neutral” stance to condemning the LGBT populations. In 2002, the Indonesian parliament established Islamic Sharia laws in the province of Acheh and the city of Palembang in South Sumatra (Bruce-Jones and Itaborahy 2011). These Islamic-based laws approve criminalization and impose hefty fines to Indonesians caught having same-sex sexual activities.

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Several other Asian countries, namely, Brunei Darussalam, Iran, Iraq, Pakistan, Saudi Arabia, Qatar, and Yemen, view homosexuality as a criminal offence punishable with death penalty upon conviction (Carroll and Mendos 2015). Brunei Darussalam, in 2019, enacted its controversial Sharia Penal Code Order, allowing the act of stoning lesbian, gay, bisexual, and transgender (LGBT) Bruneians who committed homosexual acts to death (Black 2019). However, there has been a shift of societal attitudes towards LGBT people in certain countries in Asia. In China, Indonesia, Japan, the Philippines, South Korea, Thailand, and Taiwan, some legislations have been proposed to support LGBT rights (Ng 2018). Over the last 30 years in China, there has been a rise in LGBT activism and civil society organizations have emerged to address social issues and to meet the needs of LGBT people (Gray 2014). These LGBT CSOs assist by providing support hotlines and counseling, organizing empowerment workshops, as well as facilitate gatherings (Kollman and Waites 2009). Among countries in Asia, Japan and Taiwan are regarded as the most progressive with regards to LGBT rights. Both these countries have no laws to criminalize homosexuality (Hikita 2018). In 2011 and again in 2014, Japan voted to uphold the United Nations Human Rights Council resolutions to protect the rights of LGBT people (Addo 2014). In May 2017, Taiwan’s Constitutional Court made a landmark decision as Taiwan became the first country in Asia to legalize same-sex marriage (Ho 2019). In 2020, Thailand’s cabinet supported a Civil Partnership Bill that would permit partnership registration of same-sex couples, allowing them to have almost all of the same legal entitlements as heterosexual married couples. The bill is currently awaiting parliament for ratification.

6

Impact of Stigma and Discrimination on Access to HIV Services and Treatment

MSM living in low- and middle-income countries (LMIC) continue to experience higher rates of HIV infection, as compared to the general male adult populations (Beyrer et al. 2012). Cambodia, China, Indonesia, Myanmar, Taiwan, Thailand, and Vietnam reported high levels of infection, with HIV prevalence of up to 10% among MSM (Bowring et al. 2016). It has been documented that some MSM in Asia exhibit high risk behaviors for both sexually transmitted diseases and HIV infection, as they engage in unprotected anal intercourse, recreational substance use, and have multiple sexual partners (Pham et al. 2015). Despite, the rate of new HIV cases among MSM steadily increasing in many regions in Asia, studies showed that access to HIV prevention and testing, as well as sexual health services remain low (Bowring et al. 2016). In many countries, HIV treatment and prevention services for MSM remain critically under-resourced, particularly in Asia (van Griensven et al. 2017). Available data showed that less than 2% of global HIV prevention funding is allocated for MSM (Beyrer 2010). MSM who are living with HIV have very limited access to free condoms, lubricants, HIV testing, as well as antiretroviral treatment (Arreola et al. 2015). Newer biomedical prevention interventions such as pre-exposure

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prophylaxis (PrEP) and post-exposure prophylaxis (PEP) are often not accessible to MSM living in Asia. Sexual stigma and criminalization of same-sex sexual behaviors may hinder health behaviors, including participation of HIV services among MSM population (Beyrer 2010; Beyrer et al. 2012). Cultural marginalization also plays an important role in producing stigma and discrimination towards sexual minorities, further ostracizing them from seeking appropriate medical treatments (Ecks and Sax 2005). In many East Asian countries, Confucianism appears to have a dominating influence in the traditions, values, and norms of the community (Nguyen and Angelique 2017). The doctrines of Confucianism are embodied by the principles of communalism, filial piety, emphasizing traditional gender roles, with men being responsible for lineage continuity (Ha et al. 2015). These teachings may promote internalized homonegativity within individuals (Nguyen and Angelique 2017). Not surprisingly, in Vietnam, the majority of MSM chooses to hide their sexual orientation identities from others around them (Nguyen and Angelique 2017). Those who exposed their MSM statuses automatically become vulnerable to stigma, discrimination and sexual violence (Hershow et al. 2018). Persisting stigma reduces the utilization of HIV-related care and support services among MSM in Vietnam (Giang et al. 2012). Similarly, some Chinese MSM are reluctant to come forward for HIV testing and treatment, fearing the stigma against them (Wei et al. 2014). Stigma and discrimination pose a major threat in China’s attempt to promote HIV prevention among MSM. While societal awareness regarding gay-related issues may have increased, levels of acceptance and remains low. Lack of acceptance portrayed in the society, coupled with lack of legal protections, may potentiate the negative effects of social stigma against MSM in Asia. Stigma and discrimination portrayed by healthcare providers towards MSM have also been found to be a major barrier, preventing them from accessing HIV services and treatment (Kinsler et al. 2007). In the context of healthcare, stigma against MSM may take the form of withholding of health information, reduced quality of care, and in worst case scenarios, delayed or denial of medical care altogether (Genberg et al. 2009). In Malaysia, studies found negative attitudes towards MSM and people living with HIV by healthcare providers (Tee et al. 2019) and medical students (Jin et al. 2014).

7

Impact of Stigma and Discrimination at Workplace

Over the past several years, many Western companies have initiated protection of LGBT rights and publicly announced their stand as LGBT-friendly workplaces. By contrast, companies in Asia have been much more reserved in their views towards this matter. Asian firms tend to disengage from social issues of their employees. More so with issues, such as LGBT, that is viewed as controversial and against the entrenched social norms. The idea that workplaces represent venues for personal development and function as “safe spaces” where staffs can freely express themselves, remain widely uncommon in many Asian companies.

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The LBGT individuals struggle with the anticipatory injustice associated with “coming out” (Zimman 2009). They juggle with a challenging choice between disclosing their preferred sexual/gender identity to protect their intrapersonal harmony versus the expected interpersonal backlash from others by doing so. However, the terror of discrimination, stigmatization, and prejudice still proves to be a crucial determining factor for a majority of LGBT individuals to conceal their sexual orientation and, for some, gender identity at their respective workplaces. Therefore, many LGBT individuals are forced to conform to the heterosexist hegemony and to the gender role of the sex at birth (Connell 1995). Neal (2000) concludes that individuals who inhibit themselves from expressing their gender identity are predispose to experience stress, depression, as well as other health complications. These individuals lose the sense of fulfilment and pleasure at work, and gradually face a downward spiral up to a point whereby they encounter functional impairment at their workplaces. While LGBT employees in Asian countries have not received the same level of protection as compared to their Western counterparts, there are subtle changes and quiet movements to advance the LGBT worker rights in the region. To date, Thailand is the only country in Southeast Asia that has national laws to protect its citizens from discrimination experienced at work place due to their gender identity or sexual orientation (Manalastas et al. 2017). Alibaba, the world renowned Chinese e-commerce giant, in recent years, has expressed its acceptance and support for LGBT rights (Y. Wu et al. 2018). Besides this, in Hong Kong, LGBT-friendly policies have started to emerge in major firms (Chia and Barrow 2015). As of late, India has also started demonstrating more signs of public acceptance towards LGBT individuals at workplaces (Misra 2009).

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Impact of Stigma and Discrimination at Schools

In schools, a heteronormative culture may lead to negative consequences on health and learning outcomes among LGBT students or students who are perceived to be LGBT (Huebner et al. 2004). As sexual minority students express gender role nonconforming behaviors, they may experience traumatic experiences associated with homophobic and transphobic bullying and peer victimization (Petterson et al. 2017). In Thailand, a national study of homophobic and transphobic bullying found that students who identified as LGBT, or reported displaying gender role that is less masculine or less feminine than the social norm, were more likely to experience social victimization (Do et al. 2020). Literature suggested that LGBT students are more predisposed to experiencing bullying than their heterosexuals counterparts (Kahle 2020). Besides exposure to traditional bullying, sexual minority students are also victims of cyberbullying (Luk et al. 2018). Cyberbullying victimization contributes to prolonged psychological distress in view of the borderless, irreversible, and rapid spread of information online. A recent meta-analysis demonstrated that LGBT adolescents had 2.94 times the risk of developing depression as compared to their heterosexual

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counterparts (Lucassen et al. 2017). These students also portrayed higher rates of suicidal ideations and attempts (Lucassen et al. 2017). Similarly, in China, reports concluded that sexual minorities among Chinese students were at a greater risk of developing depressive and anxiety disorders, as well as, suicidality and self-harm (Zhao et al. 2020). In Hong Kong, approximately 40% of LGBT students expressed that they were being socially isolated (Kwok and Wu 2015). Meanwhile, in Thailand, students who identified themselves as MSM are highly stigmatized and have been socially excluded from student activities such as student government, or using public facilities and spaces in and around school including being fearful when using school toilets or when participating in overnight school camps (Do et al. 2020). Additionally, LGBT students may suffer from physical neglect (Sterzing et al. 2016), sexual abuse (Bouris et al. 2016; Sterzing et al. 2016), as well as weapon assault (Bouris et al. 2016). Traumatic experiences in schools have caused an increase in social isolation and absenteeism among them (Olsen et al. 2014). Some students may also use substances as means to cope with their traumatic experiences (Donahue et al. 2017).

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What Can Be Done Better to Reduce or Eradicate Stigma and Discrimination?

Multilevel interventions should aim at improving sexual health and addressing structural barriers such as sexual stigma and criminalization among MSM populations. Moreover, close collaborations with legislators, funders, researchers, and community-based organizations is necessary in the effort to confront sexual stigma, decriminalize homosexual behaviors, and increase investment towards effective HIV services for MSM (Arreola et al. 2015). At the policy level, meticulous planning is required to ensure sufficient allocation for the investment of HIV services and treatment. It is important for adequate funding for HIV services to be matched with the efforts to reduce sexual stigma and measures to decriminalize same-sex behaviors. Unless these measures are done concurrently, efforts to effectively increase and optimize MSM accessing HIV services and treatment would be futile (Arreola et al. 2015). Additionally, efforts on repealing laws that criminalize same-sex behaviors are needed. MSM should be viewed as a vulnerable population that requires support and receives equal treatment by their healthcare professionals, colleagues, family, and community members. Policy-level interventions may indeed have the greatest impact in reducing HIV risks and decriminalization of HIV-related behaviors (Baral et al. 2013). Changes made at policy-level also enable creation of a safe and enabling environment required for MSM to seek their much required HIV prevention and treatment services (Baral et al. 2013). Government and policy-makers can also work on reforming current school-based sexuality education to include issues pertaining to LGBT people (Gegenfurtner and Gebhardt 2017). While China, Cambodia, India, Indonesia, Philippines, Thailand, and Vietnam are Asian countries that have incorporated sexuality education

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programs in their schools, many programs lack a comprehensive sexuality education program (Liu and Sun 2016). The United Nations Educational, Scientific and Cultural Organization (UNESCO) defines comprehensive sexuality education as a culturally relevant approach to providing scientifically accurate information to young people in a nonjudgmental way (UNESCO 2015). Current sexuality education curricula in Asia, however, do not adequately cover issues related to LGBT, gender role conformity, and sexual rights, but rather tend to focus solely on sexual anatomy and physiology, sexual health and well-being, and birth control (Ponzetti Jr 2016). Reformation of a more comprehensive sexuality education which includes a frank and honest discussion of all forms of sexuality in school curricula remains controversial (Gegenfurtner and Gebhardt 2017). Therefore, topic such as LGBT issues and of sexual rights should be included in sexuality education programs. An understanding about sexual minority population will lead to a safe learning environment in which LGBT students feel more secure and less victimized (Formby 2016). At the community level, sexual stigma needs to be addressed in order to improve access to HIV services among MSM. Interventions should aim at challenging sexual stigma targeted towards MSM. These interventions should focus on eliminating physical, sexual, and emotional trauma and violence inflicted against MSM population. Sexual stigma and criminalization induce fear among MSM, and as a consequence, many among them choose not to disclose their sexuality and health problems. They are bound to the believe that disclosure of their sexuality puts them at risk for incarceration, violence, and ostracism (Baral et al. 2009). Those who know lesbian and gay people at a personal level and interact frequently with them not only portray very minimal homophobic attitude towards this stigmatized group of individuals but are able to develop warm affiliative relationships with them (Pettigrew and Tropp 2006). The contact hypothesis has postulated that intergroup attitudes may be improved by increasing exposure of one social group to another (Brewer 2007). In other words, prejudice towards outcasts such as sexual minorities may be reduced via interpersonal interaction (Pettigrew and Tropp 2006). Meta-analysis of previous studies demonstrated that interpersonal contact increases the understanding, and at the same time, reduces stereotypes, of social groups with which individuals do not identify with (Pettigrew and Tropp 2008). Reduction in stereotypes, in turn, leads to reduced prejudice and discrimination towards vulnerable groups such as MSM (Brewer 2007). In addition, healthcare providers and administrators should create welcoming environments for MSM and other sexual minorities to receive HIV services and treatment. Pervasive sexual stigma needs to be addressed especially among those working on a daily basis with MSM in screening and healthcare centers (Beyrer et al. 2013). There should be careful selections of non-homophobic service providers who are capable to educate and train their fellow service providers and other staffs. Working towards a common goal to create a confidential, empathetic, nonjudgmental, and safe environment for MSM individuals to discuss their sexuality and sexual health needs is crucial. This would then ensure that more MSM to come forward and reach out for HIV services, without experiencing negative emotions of fear, guilt, and shame. Besides this, increased efforts to provide continuous and vigorous

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community-based campaigns may also help sensitize the community, reducing homophobic attitudes.

10

Conclusion and Future Directions

In Asia, as many other places around the world, pervasive stigma, discrimination, and social exclusion are common among MSM populations. Addressing stigma, discrimination, and human rights violation should be a priority for policy-makers, service providers, as well as researchers. The task to eliminate stigma and discrimination among MSM requires evidencebased interventions at various levels of the socio-ecological framework (Beyrer et al. 2012). Interventions should begin with decriminalizing same-sex sexual activities, legal ban against discrimination towards sexual and gender minorities, and ensuring legal protections, while enhancing confidentiality protection for them (Ibragimov and Wong 2018). Regular trainings and desensitization activities ought to be carried out among service providers and clinicians, targeting individuals working closely with the LGBT community, at healthcare facilities, human rights organizations and NGOs (Ibragimov and Wong 2018). The current political system in many countries and entrenched social norms may deter policy reforms. Nevertheless, these reforms are pivotal for any stigma reduction interventions to be effective and sustainable. More research is required to quantify the impact of stigma reduction interventions on MSM participation in HIV services and implementation of positive health behaviors. Researchers will require more data pertaining to sociocultural contexts of various MSM populations, improved methods to collect and analyze information, and orchestrate ways to increase recruitment and participation of sexual and gender minorities in such research. Addressing stigma and discrimination will benefit not only MSM individuals but public health as a whole. Elimination of such negative attitudes towards MSM will encourage and empower them to access sexual health and mental health services and promote their resilience and well-being to thrive in the society.

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Programs and Practices to Support Community Participation of People with Intellectual Disabilities

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Understanding Intellectual Disabilities: A Critical Realist Approach . . . . . . . . . . . . . . . . . . . . . . 3 Conceptualizing Community Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Ambiguity: Why Does It Matter? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Broad Conceptualizations of Community Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 A Typology of Community Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Community Participation as Convivial Encounters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Facilitating Convivial Encounters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Going Backstage to Create Opportunities for Convivial Encounters . . . . . . . . . . . . . . . . 5 Community Participation as Social Relationships . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Approaches to Supporting Development of Social Relationships . . . . . . . . . . . . . . . . . . . 5.2 Circles of Support . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Befriending and Matching Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Community Participation as a Valued Sense of Belonging and Identity . . . . . . . . . . . . . . . . . . . 6.1 Approaches to Supporting a Valued Sense of Belonging and Identity . . . . . . . . . . . . . . 7 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

People with intellectual disabilities fare badly on all indicators of social inclusion compared to the general community. The reasons for this stem from the complex interaction of their individual needs for support with participation and discriminatory social structures. Community participation is a core component of social inclusion, which despite significant policy attention and program investment remains elusive for people with intellectual disabilities. This chapter explores three primary ways that community participation has been conceptualized for adults with intellectual disabilities, and reviews evidence about strategies for C. Bigby (*) Living with Disability Research Centre, La Trobe University, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_36

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achieving it. The significance of conceptual clarity and need to differentiate and tailor programs to people with intellectual disabilities run as core themes through the chapter. The first two sections provide a brief introduction to a critical realist understanding of intellectual disabilities and broad conceptualizations of community participation. The following sections discuss community participation as convivial encounter, community participation as social relationships, and community participation as a valued sense of belonging and identity, and consider the types of interventions and strategies for furthering participation that follow from each of these. Attention is drawn to the scant evidence base for effective programs and the limited focus of programs on people with more severe and profound intellectual disabilities. Keywords

Intellectual disabilities · Community participation · Convivial encounters · Social inclusion

1

Introduction

Including people with intellectual disabilities in all aspects of society, social, economic, and political, has been a policy vision of many western societies since early steps toward deinstitutionalization and community living in the 1970s. The first declaration of the United Nations about the rights of people with disabilities in 1971 focused specifically on those with intellectual disabilities, and albeit in the language of the time and rather timidly, asserted their right to “perform productive work or to engage in any other meaningful occupation to the fullest possible extent of his capabilities. . .live with his own family. . .and participate in different forms of community life. . .” (United Nations 1971, Sects. 2–3). Since then, successive national policies and international treaties have affirmed the rights of all people with disabilities as equal citizens and progressively strengthened ambitions for inclusion. The necessity for continued policy goals of inclusion of people with intellectual disabilities speaks not only to its significance to their quality of life but also to policy failure and continuing exclusion. This group fare much worse compared to other citizens on all indicators of inclusion – employment, size and nature of social networks, participation in post school education, access to health services, membership of community groups, voting, and loneliness for example (Clement and Bigby 2009; Gray et al. 2014; Bigby et al. 2019; Petroutsou et al. 2018; Wilson and Campain 2020). In Australia, data from the National Disability Insurance Scheme (NDIS) echoes this body of research. The scheme includes inclusion among its key objectives and invests heavily in achieving it. For example, community participation ranks third in the types of support funded and is included as a goal for approximately 50% of all participants (NDIS 2017, p. 17). The limited impact made by policies of inclusion, in Australia, is not necessarily due to a lack of investment or the inherent characteristics of people with intellectual disabilities. Rather, it stems from weak policy implementation and discriminatory

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social processes. Two underpinning reasons for policy weaknesses are the conceptual ambiguity about inclusion – the lack of clarity about what inclusion means (CliffordSimplican et al. 2015) and dedifferentiation – including people with intellectual disabilities in the broader group of people with disabilities and thus failing to take into account support needs and obstacles specific to this group (Bigby 2020). The focus of this chapter is community participation, a core component of social inclusion. The chapter explores how community participation has been conceptualized for adults with intellectual disabilities, and reviews evidence about strategies for achieving it. The significance of conceptual clarity and differentiation run as core themes through the chapter. The chapter is divided into six sections, the first provides a brief introduction to intellectual disabilities and the second discusses broad conceptualizations of community participation and the importance of clear understandings about which is being used in program design to implement policy. The following three sections discuss three different conceptualizations of community participation, and the associated types of interventions and strategies that follow from each of these. A brief conclusion draws the main points of the chapter together.

2

Understanding Intellectual Disabilities: A Critical Realist Approach

Adults with intellectual disabilities make up the single largest group of disability service users funded by the Australian NDIS, and compromise approximately 3% of the population (Bigby 2020). Their interests, family constellations, friendships, ethnicity, sexuality, and geographic locations are as diverse as any other group of adults. But they have in common difficulties with communication, problem solving, decisionmaking, social skills, and managing tasks of everyday living. Many also have autism, physical disabilities, or chronic health or mental health problems. The support people with intellectual disabilities require to live their lives well varies enormously, mediated by the severity of their impairment, their social capital, and social context. Many of the difficulties they experience stem not from their inherent characteristics but rather from the impact of discriminatory social structures and process, such as inaccessible information, stigma, negative attitudes, and low expectations of others. The nature of disability is often understood through the oversimplified binary of a medical model, which focuses attention on an individual’s impairment, versus a social model, which focuses attention on social structures. Medical models of disability tend to focus on deficits and making people more “normal” so they can fit in. Thus, for example, in the context of community participation, a medical model might suggest teaching a person with intellectual disabilities the skills needed to participate in a community group or just sending along a support worker to be there with them. This contrasts sharply with a social model approach that might suggest working to change attitudes of community group members toward people with intellectual disabilities, so the group is more welcoming and better able to adjust their individual communication to be more inclusive. However, much of the attention in social model thinking is on physical or sensory obstacles to participation rather those of a cognitive nature. For example, stairs or narrow doors are powerful obstacles to participation in a community

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group for a person with a physical impairment who uses a wheelchair but putting in a ramp will do nothing to address the obstacles posed to the person with intellectual disability by the complicated automated answering system on the information hot line about the community group. This chapter takes a relational or critical realist view of disability (Shakespeare 2014). Critical realism suggests the importance of the complex interaction between impairment and social context in thinking about intellectual disability, addressing exclusion, and bringing about change that facilities community participation. It means holding together contrasting perspectives: consideration of real-world implications of individual limitations without locating the problem solely with the individual while also drawing out the disabling impact of social structures and the way society regards and interprets differences. Thus, a critical realist understanding moves away from either/or thinking to an and approach. It asks, what difficulties does the individual experience in participating and why? Which of these are directly related to their impairment, for example, difficulty making decisions or selforganizing? What is there in the social context that creates obstacles for the individual that might be changed, and, if it cannot be changed, what support might that individual need to overcome that obstacle and participate? For example, a person with mild intellectual disability, because of difficulties stemming from their impairment such as decision-making, literacy, and using the internet, might need support to find out and decide about going to a concert with a friend. They are confident to use public transport to get there and go together. However, they encounter difficulties finding their way around the venue as all the signage uses complex words and is in small print. The signage creates an obstacle to their participation that could be easily changed by designs that use simpler language and symbols. If these were done and the obstacle removed, the friends with mild intellectual disability would be enabled to navigate their way around the venue by themselves. If not, they are likely to require assistance from a support worker or people in the venue, interfering with both their independence and enjoyment of the experience. That complex signage does not necessarily pose an obstacle for people with other types of disabilities who have good literacy skills illustrates why understanding the nature of impairment is important; in this case knowing that most people with intellectual disabilities have low levels of literacy. Of course, every individual is different, and support must be person centered, based on knowledge about that individual, in this case their musical preferences, as well as deeper knowledge about the characteristics of the group they belong and thus the common obstacles likely to be experienced in social contexts. Social change to bring about inclusion would be very slow if people always started from the individual – critical realism helps to understand common obstacles posed by the interaction of intellectual impairment and social contexts, addressing these helps in building the foundations for inclusion. For example, making training available to all community groups about strategies for including members with intellectual disabilities, mandating use of universal symbols on signage. Critical realism points to the benefit of understanding the common individual support needs of people with intellectual disabilities, such as supported decision-making, and then

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in ensuring the support is person centered by tailoring it to the individual, such as knowing that this individual uses key word sign to communicate. Understanding about the group or subgroup of which a person is part does not detract from their individuality, but rather provides a starting point for person centered support and sensitization to the broader obstacles to participation that need to be considered. Thus, a critical realist approach suggests that sometimes it is necessary to differentiate people with intellectual disabilities from others with a disability, particularly in policy implementation, program design and staff training, to ensure the specific types of obstacles to inclusion they experience or support needs are addressed. However, in some circumstances there may be no reason to differentiate people with intellectual disabilities from all other people with disabilities. For example, in relation to advocacy to strengthen antidiscrimination laws or funding to enable organizations to make reasonable adjustments.

3

Conceptualizing Community Participation

3.1

Ambiguity: Why Does It Matter?

As the Chair of the short lived Australian Social Inclusion Board suggested, the power of terms such as social inclusion and participation comes not from “analytical clarity, which is conspicuously lacking, but from their flexibility” and the proper question should be “what we mean by it” (2009, p. viii). Community participation, like social inclusion, is a slippery and ambiguous concept, often described using vague motherhood statements and interchangeable words, that are part of the terminological forest common in intellectual disability and social policy. Prefixes like social and community are interchanged as are terms such as participation, inclusion, and integration – to make composites like community inclusion, social participation, and so on. All of these are vague, warm, and fuzzy concepts conveying a powerful normative ideal, in much the same way as community was used described by Bryson and Mowbray (1991) as the spray solution for all manner of social problems in the 1980s. For example, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (2006, art. 3) refers to “full and effective participation and inclusion in society,” the NDIS (2013, sec. 3c) to “the independence and social and economic participation” and the National Disability Strategy (Commonwealth of Australia 2011, p. 10) to “inclusion and participation in the community.” Few would question the broader underlying intent, so why is conceptual clarity important? The absence of consistent conceptual frameworks from the research literature makes community participation difficult to research or quantify. Its flexible use in policy makes it hard to implement. Its ambiguity makes it difficult for disability support organizations to design interventions or programs to support it and to know the skills staff require. International treaties such as the CRPD convey overarching policy intent, but to implement policy, intent must be translated into specific initiatives or programs with clear and perhaps even measurable purpose and outcomes. Implementation theories

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suggest for example that clarity, minimal ambiguity, and simple workable models are necessary for effective implementation (Bridgman and Davis 2000). Ambiguity about intentions hinders shared meaning and language among stakeholders, and creates uncertainty about what is to be achieved, how, and what success looks like for whom (Clifford-Simplican et al. 2015). How a problem is conceptualized frames thinking about what needs to change and design of programs to solve it. Conceptual clarity is also becoming more important for people with intellectual disabilities as new models of individualized funding hand them power to purchase their own services. Choice is becoming pivotal for people using disability support services, and consumers need to know what is on offer to make informed choices. How is a person to choose between services similarly labeled community participa tion when these range from provision of an individual support worker with a vague mandate to support participation by taking the person out for lunch, to offers of being a volunteer in a dog shelter. People with intellectual disabilities and their families need to know what is on offer, what outcomes can they expect, how likely are they to eventuate, and what evidence underpins the service design and delivery, in order to make an informed choice about their purchases. The following section considers broad overarching conceptualizations of community participation and then three different conceptualizations are explored in some depth, illustrating the types of strategies associated with pursuing each for people with intellectual disabilities.

3.2

Broad Conceptualizations of Community Participation

Health and Allied Health professionals commonly understand participation as “involvement in a life situation,” drawing on the International Classification of Functioning (ICF) (World Health Organization 2001). This understanding has underpinned several important studies by intellectual disability researchers. For example, Verdonschot et al. (2009, p. 304) framed community participation as, “the performance of people in actual activities in social life domains through interaction with others in the context in which they live” and Dusseljee et al. (2011, p. 4) as “performing daytime activities while interacting with others.” Both of these include three components, activities, place, and social interactions but do not consider qualitative or experiential aspects of these. For example, type of place, was it segregated or mainstream, the nature of activities, were they meaningful to the person or reflect their preferences, and the tone and familiarity of social interactions, with whom did they occur, were they friendly. These omissions are problematic, as not all places or people are “unambiguously virtuous,” respectful or welcoming of people with intellectual disabilities (Bates and Davis 2004, p. 201), and people prefer very different types of activities. Accordingly, some researchers have argued that more focus on choice and subjectivity is necessary to understand the meaning of community participation (Clifford-Simplican and Leader 2015). The conclusion often reached that people with intellectual disabilities are present but not participating in communities reflects another way of conceptualizing community participation derived from the work of the O’Brien’s (Amado 2014; O’Brien

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and Lyle 1987). Here the distinction is made between community presence, as the use of facilities or services available to everyone and community participation, as being part of a growing network of relationships of people with and without intellectual disabilities. Influenced by normalization (Wolfensberger 1972), this way of thinking emphasizes specific types of places and social interactions as fundamental to community participation; presence in mainstream places and relationships with people who do not have disabilities (Cummins and Lau 2003), that are freely given rather than paid (Amado 2014) or that involve reciprocity (van Alphen et al. 2010). Similar to ICF-based conceptualizations, this understanding of community participation pays little attention to choice, tending toward prescription of what is good. Clifford-Simplican and Leader (2015) argue this approach reflects a communitarian ethos, emphasizing belonging to “the community” which is assumed to have shared values and norms rather than recognizing the diversity of communities which are based on much more than geography. By privileging the mainstream and relationships with people without disabilities, it overlooks the existence and significance of relationships with peers and the hurtfulness of the rejection often experienced in the mainstream and leaves little room for choice or voice about inclusion.

3.3

A Typology of Community Participation

A typology, developed from a review of literature about strategies to support community participation of people with intellectual disabilities, identified three ways community participation had been conceptualized (Bigby et al. 2018a). • Community participation as convivial encounters. • Community participation as social relationships. • Community participation as a valued sense of belonging and identity. Quite different theories of change and strategies for achieving community participation are associated with each conceptualization. Although each includes place, activities, or social interaction, they differ in the relative importance given to each. Interestingly, despite the quite different conceptualizations, and consequential strategies to facilitate participation, evidence from this and later studies suggests outcomes from all three types of community participation can be similar revolving around, personal development, increased social network members, and positive subjective feelings (Bigby et al. 2018a, b; Bigby and Anderson 2020; Anderson and Bigby 2020). Each of these types of community participation and strategies to facilitate them is discussed below.

4

Community Participation as Convivial Encounters

Conceptualizing community participation as convivial encounters emphasizes mainstream public or commercial places, activities shared by people in those places, and friendly social interactions between them that occur predominantly only in that

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place. Thus, convivial encounters are social interactions between strangers with a common purpose in public places marked by friendliness or hospitality. This understanding of community participation emerged from questioning the binary between community presence and participation, and exploring what lay between people with intellectual disabilities being just present in the community and having firm friendships with other community members (Bigby and Wiesel 2019, 2021). It draws on concepts of encounter and conviviality, which sociologists and urban geographers use to understand inclusion in modern cities. Goffman’s (1961) idea of encounters as agreements between people to sustain a single focus of attention and Jacobs’ (1972) that such encounters form part of a web of public respect and trust were used by Fincher and Iveson (2008) to understand difference and diversity in cities where most people are strangers and citizens have multiple and different identities. Convivial encounters, when strangers share an activity with a similar purpose or intent, occur in places ranging from a bus queue to a community music group, and the temporary shared identities range from public transport users to musicians. Convivial encounters are “neither simply anonymous free mingling (usually seen as community presence) nor interactions based on established relationships (usually seen as community participation)” (Bigby and Wiesel 2015, p. 308). Inspired by these ideas and searching for strategies to support community participation, researchers have explored ways that people with intellectual disabilities meet and interact with others in public and commercial places (Bredewold et al. 2016, 2019; Bredewold 2021; Wiesel and Bigby 2014, 2016). Bigby and Wiesel (2019) identified three types of convivial encounter: 1) momentary shared identifi cation, moments of friendly interaction with strangers around a shared activity or identification. For example, interacting with other fans of a team at a football match; 2) moments of everyday recognition, fleeting friendly interactions with strangers that acknowledge the right of a person to use the space but do not involve any form of shared identification, other than perhaps as a trader and customer. For example, expression of patience by another shopper while a person is supported to make a transaction, or a friendly exchange at a supermarket checkout, and; 3) repeat encounters and becoming known, regular and repeated momentary encounters involving shared identification or everyday recognition where people become known by name by others without a disability. For example, a middle-aged man being recognized and greeted by name by other members of a community group when he attends a weekly gardening group where other members help him find tools, and he shares in the tasks of maintaining a historic garden site. The people with whom he interacts are friendly, but acquaintances rather than friends and he does not see them in other contexts, other than perhaps a chance passing in the street or a shopping center. It is important to remember that not all encounters experienced by people with intellectual disabilities in public places are convivial. Encounters may be hurtful, and reinforce difference through, ridicule, impatience, or condescension (Bredewold 2021). Or they may be non-encounters, a form of social interaction that aims to maintain social distance and avoid more convivial or social contact (Blonk 2021).

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Fig. 1 Components highlighted in community participation as convivial encounters

All types of convivial encounter actively affirm the right of a person to be in a public or commercial space and share in activities that are occurring there. The theory of change implicit in community participation programs or strategies that aim to facilitate convivial encounters is that, supporting people with intellectual disabilities to join mainstream community groups, undertake volunteer work, or engage in social interactions in commercial or public places will lead to repeated, intermittent, or singular momentary convivial encounters. Figure 1 is a heuristic that represents the three overarching components of community participation and the potential outcomes. The components emphasized in programs that understand community participation as convivial encounters are highlighted as activities and mainstream places that act as a means of enabling positive social interactions with others without intellectual disabilities.

4.1

Facilitating Convivial Encounters

While some convivial encounters just happen by chance, a growing body of evidence suggests they can be supported by the right practices and “encouraged by the

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right rules, the right props and the right places and spaces” (Peattie 1998, p. 248). For example, support workers can facilitate moments of friendly interaction with strangers around a shared activity by being attuned to possibilities while they are supporting people with intellectual disabilities out and about doing shopping or using other public facilities. One study observed workers being alert to and supporting opportunities for convivial encounters in places such as shops, a café, a bowling alley, a bank, a street market, and a dance class and gently managing moments of awkwardness or anxiety felt by either party (Bigby and Wiesel 2015). An online training program for support workers based on the fieldwork from this study captured many examples of their skills in initiating encounters, prompting people with intellectual disabilities to take the initiative, stepping back rather than interfering, interpreting communication or actions to members of the public or sales staff (Supporting Inclusion 2015). For example, one clip shows a support worker actively shaped the behaviors of both the bank teller and Daisy, a person with intellectual disability, by positioning herself to encourage them to have direct eye contact, redirecting Daisy’s attention back to the transaction, and directing the teller’s questions to Daisy. Support workers can also take a more proactive approach to supporting convivial encounters, by planning to go to the types of places more conducive to convivial encounters, discussed below, or frequenting the same places at the same time on a regular basis to increase the chances of the person experiencing repeat encounters and becoming recognized or known by name. This latter strategy may be a long shot however, fraught with serendipity and hindered by uncertain work pattern of tellers for example. The minute nuances of support workers’ gestures, words, and actions serve to initiate encounters, assist conviviality, and make the difference between recognition and exclusion of people with intellectual disabilities. In these examples, they happen largely on what Goffman (1961) terms the front stage of encounter, as performances visible to a wide audience. There is, however, also a backstage of convivial encounters, where the work of planning, preparation, and maintenance, “behind the scenes” occurs. While backstage work is largely unnecessary for the first type of momentary convivial encounters it is fundamental to creating regular and recurring opportunities for the third type, repeat convivial encounters that enable the person to become recognized and known. Backstage work takes many forms and can be undertaken by municipal authorities, staff in dedicated community participation programs, and support workers.

4.2

Going Backstage to Create Opportunities for Convivial Encounters

Research in both Australia and the Netherlands has shown that some features of community places are conducive to convivial encounters such as having noncompetitive activities, opportunities for verbal and nonverbal communication, and a common purpose for being there. Places such as community farms or libraries

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often have these characteristics (Bredewold et al. 2016, 2019; Wiesel and Bigby 2014, 2016). Using the difficulties experienced in facilitating convivial encounters in an unstructured community restaurant, Bredewold et al. (2019) illustrate the importance too of places having built in social boundaries, clear roles for everyone and rules around interaction that make it easy to both engage with each other and disengage. This type of knowledge is important for design of community places, for the organizations that manage them and for support workers seeking out places that offer good opportunities for convivial encounters. In terms of props, “more people talk to you when you have a dog” is as true for people with intellectual disabilities as it is for other community members (Bould et al. 2018). Disability support organizations that support community living, or create social enterprises might think about animals, not for assistance or therapeutic purposes but as pets or as the basis for micro dog walking businesses where they can act as facilitators of convivial encounters. Some community participation programs focus particularly on creating opportunities for repeated convivial encounters (the term is not yet commonly used and they are usually referred to as community participation programs). For people with intellectual disabilities supported by these programs, such encounters do not happen by accident, but rather as a result of the skilled backstage work that sets the stage. For example, in one study a worker talked about having created an opportunity for Dave, a person with intellectual disability to work alongside a volunteer at a regular community market handing out raffle tickets which had led to repeated convivial encounters and him becoming recognized and known. She explained, . . .he wouldn’t be getting our support as such but we can set it up. . .That might take three, four, five times [meeting the organisers or his family]. . . we are not standing by his side on a Sunday at the market doing it with him. . . (Bigby and Anderson 2020, p. 5)

Research has conceptualized the backstage work of creating opportunities for repeated convivial encounters, as having five core processes (Bigby and Anderson 2020). Each is discussed briefly in the sections below. • • • • •

Getting to know the person and planning Exploring possibilities for convivial encounters Negotiating or establishing opportunities Supporting and maintaining participation Team working and supervising staff

4.2.1 Getting to Know the Person and Planning Planning with the individual, getting to know someone well, their interests, culture, friends, support needs, and using this information to plan the types of places, activities, and people they prefer to spend time with must be the first step to creating opportunities for convivial encounters. This can be a lengthy process involving multiple people but is especially important for the people with more severe intellectual disabilities who are unable to easily convey preferences in words. Planning

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involves decision-making, and staff may need to draw on some of the practices inherent in supported decision-making, for example, fully exploring options by supporting people to experience new types of activities to widen their horizons (Bigby and Douglas 2021). Planning also occurs at a program level, across different parts of a program or organization so that knowledge can be pooled, people with common interests who might want to partner with each other identified, ideas about new initiatives can be generated, and staff time and skills coordinated.

4.2.2 Exploring Possibilities for Convivial Encounters Exploring possibilities is an outward looking process, which involves staff searching for existing activities, such as classes or groups that the people they support might join, facilities they might use. Or alternatively, they might search for gaps that could be filled by creating new groups and social enterprises or establishing new relationships and contracts with commercial or nongovernment organizations. Table 1 illustrates eight different types of possibilities explored or created by two community participation programs to set up opportunities for convivial encounters for the individuals or small groups of people with intellectual disabilities they support. Staff exploration of possibilities is generally tied to an individual and informed by the planning process. It requires knowledge of the individual and of the often invisible networks of small groups or organizations in a locality or associated with particular interests or identities, as well as creativity and problem solving skills. Exploration might also be generic and speculative, laying the groundwork for future opportunities for as yet unidentified individuals by raising awareness among businesses and other organizations of possibilities and building relationships. Exploring possibilities may involve assessing how the culture and activities of groups or organizations align with the characteristics and interests of the person with intellectual disabilities who might attend and the potential for them to be welcomed. Some indicators are: how group leaders react to including the person, do they regard them differently from any other new member, express concerns about their fitting in or being manageable for the group, seek to impose of conditions for attendance, such as being accompanied by a support worker, who in the group would take responsibility for including the person, is the group open to some expert advice, how do group members regard inclusion, do they think the group is the right place for a person with intellectual disability or think they should be going to a “special place.” Some evidence suggests that willingness to accept expert knowledge to assist group members deal with uncertainties about interacting with a person with intellectual disabilities, endorsement by leadership, members familiar with people with intellectual disabilities and presence of integrating activities that bring members together at the start of a session are features likely to support inclusion (Craig and Bigby 2015a, b). 4.2.3 Negotiating or Establishing Opportunities Negotiating participation of a person with intellectual disabilities follows from the identification of possibilities, individual planning and exploration. If possibilities

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Table 1 Different types of possibilities for convivial encounters and examples Identifying an opportunity for an individual and negotiating with a public institution or commercial enterprise A young women volunteers weekly in a local school replacing books to the shelves in the library. After a few weeks she is known by name by the teachers and many of the children in the school, who drop into the library to say hi to her. Establishing a community service to a public institution and breaking down of process into discrete activities for a small group of people A small group of people prepare fruit that has been discarded by a retailer and distribute it to each class in the school once a week. They cut up the fruit in the school kitchen and are welcomed by name by staff and pupils when they bring it to classrooms for the afternoon break. Establishing a social enterprise and breaking down processes into discrete activities for a small group or individual A young man regularly goes to collect jars purchased from a wholesaler to be filled with produce and sold in the organization’s shop. He travels with a supporter worker, and is recognized by the staff member at the wholesalers who is responsible the order who asks him about his week and chats about work. Identifying opportunity for a group volunteer activity and negotiating with a commercial or public provider Two people regularly volunteer with a local organization to deliver meals on wheels for older people. They take it in turns to get out the van and bring meals to recipients’ doors who recognize and thank them. Identifying opportunity for paid activity and negotiating with commercial enterprise Two people have a regular round delivering advertising material to letterboxes. They are recognized and greeted by people in the local area who are home during the day and often meet as they do their round. Identifying suitable public facility or commercial place for individual’s preferred activity One young woman goes swimming weekly in the local pool with a support worker. She has become friendly with an older man who goes at the same time each week and often holds her hand and walks up and down the pool side with her. Identifying an existing group for a preferred activity in public facility, negotiating with facility staff Two women go to a weekly aerobics class at local swimming pool, and over time gradually become more confident to attend without support from staff. After a while, they are recognized by people who sell tickets and greeted by other members of the class. Creating regular group or one off activity for people with disabilities that is open to community members and people with intellectual in disability, other specialist or mainstream space A group of people who have been growing tomatoes invite community members to come to a chutney making day at the organization’s shop. Some community members recognize and greet the people they recognize from the farm produce shop where they sell tomatoes once a week. Adapted from Bigby and Anderson (2020)

cannot be found among existing activities, then as illustrated in Table 1 new ones might be established around the individual, such as a new group, enterprises, or community service. Once conceived such ideas also involve elements of negotiation. Negotiations have to consider many different aspects, including when and where will an activity occur, how can the activity be broken down into distinct tasks, what

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parts of the activity will the person participate in, who will provide any support necessary, what is expected of others in the place and what skills do they need to interact with the person, how will the person get there, and so on. As this excerpt demonstrates, too often staff do not realize the details they have negotiated. Talking about setting up the opportunity for Maggie to “work” in a shop one day a week Anna said, “we’ve done some work with the local coffee shop”. When pressed she explained this had involved several meetings with the owner, analyzing tasks and mentoring an employee of the business to support Maggie to complete these, . . . we have been up and we’ve spoken to one of the employees, probably the senior employee of the day, and we’ve done some work around her about how to instruct, that Maggie needs simple instructions, she needs regular check ups, only one or two step instructions. . .and now the employee supervises her. (Bigby and Anderson 2020, p. 7)

As well as analyzing and breaking down activities into discrete tasks to ensure the person will be engaged in at least some parts of them, negotiation often involves identifying and developing the skills and confidence of “natural supporters” in a place. This may be as simple as helping other members of a group realize that the person needs to be invited to join an activity and that sitting alone or disengaged is less likely to be a choice than an indicator of the need for support, or that they need to use one or two step instructions when explaining a task rather than five or six step ones. Stancliffe et al. (2015, p. 704) coined the term active mentoring for the model they developed which entailed training members of community groups about communication strategies and the practice of Active Support (Mansell and BeadleBrown 2012) so they were equipped to act as mentors. The role of mentor varied with each place and individual, but for example in a senior citizens club, it involved ensuring that the person with intellectual disabilities, knew the rituals of signing in and coffee making, was allocated tasks such as laying the tables, was invited to share a table with other member and included in conversation. The backstage work, done by a community participation program, sets the stage by planning, identifying, and introducing a person with intellectual disability to places where convivial encounters might occur. By working behind the scenes, natural supporters are equipped to do the nuanced front stage actions of facilitating encounters in the moment. This type of approach creates community capital for inclusion and assuages the need for paid support workers. It also addresses the issue that while community groups are often willing to include an individual with intellectual disabilities, members lack the confidence to do so (Bigby and Balandin 2005).

4.2.4 Supporting and Maintaining Participation The composition of community groups and other types of organizations changes over time as for example members or staff leave and are replaced by new ones. Changes to the place or group where opportunities for repeated encounters have been established can mean a loss of skilled natural supporters or shifts in culture or activities of the group. Similarly, people with intellectual disabilities experience change in their lives, which may disrupt or interfere with their regular activity and

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opportunities for convivial encounters, or things may change in their social context such as transport timetables or routes. It is for these reasons that there is a need for ongoing support from a community participation program to monitor how the person is going, and whether another round of negotiation is necessary to adjust or improve what is happening for them. This might involve a staff member, dropping into the charity shop where the person is volunteering and unobtrusively observing watching their engagement and social interactions, simply asking the person how things are going or checking in with natural supporters in the place. Programs that support this type of community participation must have flexible capacity to initiate intensive periods of support when things change. Short-term support or closing the books when opportunities for convivial encounters are established does not work, rather support must be ongoing but flexible with varying degrees of intensity.

4.2.5 Teamworking and Supervising Staff A team of staff who work well together, with diverse skills are best suited to undertake the range of processes necessary to create opportunities for repeated convivial encounters. Programs need flexibility, the capacity to provide backup support, as the amount of dedicated time each individual requires will vary over time, and perhaps at short notice. Few staff will have the mix of skills necessary to work across all processes, as these require, micro skills for direct support of individuals with intellectual disabilities “in the moment” (Active Support skills); meso level skills for identifying, understanding, and negotiating with organizations, groups, and communities (community development skills); and skills for supporting decision-making and working with individuals and their families around planning (most commonly seen as social work or casework and supported decision-making skills) (Craig and Bigby 2015b; Bigby and Wiesel 2019; Bredewold et al. 2016, 2019; Every Moment Has Potential 2015; Supporting Inclusion 2015; Stancliffe et al. 2015; Wilson et al. 2013). Some costs and benefits of the work this type of community participation programs does are collective, such as building foundational relationships with other organizations or seeding new initiatives and cannot be individually costed. Thus community participation programs need to have capacity to share costs across individuals, thus they need to support a number of individuals concurrently and individually but not together as a group. Finally, this type of work is perceived as requiring more judgment and creatively than normally expected of support workers, as it occurs away from coworkers, and involves interactions with members of the public, organizational representatives and natural supporters as well as the people the organization supports. Opportunities for staff to learn from each other and reflect on the quality of their practice with more experienced practitioners are central to the quality of the work they do. 4.2.6 Summary Creating Opportunities for Convivial Encounters Convivial encounters are characterized by fleeting or more substantial and repeated social interactions between people with and without intellectual disabilities who are participating in some form of shared activity or sharing a momentary identity in a public or commercial place. The places where they occur and activities at the center of

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convivial encounters are diverse. Although research suggests the most common forms are momentary (Bredewold et al. 2016), there is growing evidence about the design of places, features of community groups, and props that facilitate them, and strategies that formal programs can use to create opportunities for repeated convivial encounters. The evidence around such programs and more broadly about convivial encounters is stronger and more rigorous than that in respect of other conceptualizations of community participation. Importantly, as the following sections discuss, an Australian research study found that it was only this type of formal program identified as including people with more severe and profound intellectual disabilities (Bigby et al. 2018b). Notably, programs that support other conceptualizations of community participation predominantly support people with milder levels of impairment. Convivial encounters are an important form of community participation, not a second-class option falling short of an ideal type and, for people with intellectual disabilities, may lead to a sense of belonging and contributing to local communities. Convivial encounters are not encounters with friends, but may indeed lead to friendships, as all friends were once strangers, although the evidence suggests, certainly in the case of those that occur in community groups that this is seldom the case (Stancliffe et al. 2015; Craig and Bigby 2015b).

5

Community Participation as Social Relationships

Conceptualizing community participation as social relationships emphasizes social interactions with others who are not paid supporters but with whom the person has a firm and informal social relationship. This conceptualization echoes that of the O’Brien’s (1993) and emphasizes relationships usually construed as friendships, which are not specific to any one place. Friendships are unique and self-defined relationships which are best understood from the perspective of participants themselves. Qualities attributed to friendship include mutuality, equality, shared interest, a sense of caring and identification with the good of the other, and benevolence or reciprocity (O’Brien and O’Brien 1993; Wadell 1989). These types of relationships are quite different from the acquaintance and place specific relationships that characterize convivial encounters. It is well established that people with intellectual disabilities have few friendships with people without disabilities, and often live in what has been referred to as a distinct social space made up of family, paid supporters, and peers with intellectual disabilities (Amado 2014; Bigby 2008; Clement and Bigby 2009). Such friendships are important, especially given the growing body of research suggesting the loneliness of people with intellectual disabilities and long held knowledge about their desire for friendships (Petroutsou et al. 2018). Making and maintaining social relationships does not happen easily for people with intellectual disabilities, a planned approach to the role of paid staff in facilitating the development of social relationships is needed. Various types of formal programs have been developed to complement natural processes as well as a greater emphasis on the role of staff in supported accommodation services in supporting social relationships. The proposition that underpins such programs is that if support is offered to people with

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intellectual disabilities to make and develop relationships with others then, as well as enlarging their social network, it will lead to opportunities for them to participate in a wide range of activities, community groups, and social interactions. As discussed earlier, the influence of normalization has meant that the focus of programs is more often on building friendships with people who do not have disabilities (Cummins and Lau 2003). Few focus on developing friendships between people with intellectual disabilities (Ward et al. 2013), which although valued by people themselves are often disregarded or devalued as having limited potential to further social inclusion (Cummins and Lau 2003). For example, friendships between people who attend day centers may not be recognized by family members, and little support is forthcoming to enable people to see their friends “out of hours” or after retirement from a center (Bigby 1998; Bigby et al. 2004).

5.1

Approaches to Supporting Development of Social Relationships

For three decades, programs have sought to support social relationships for people with intellectual disabilities (Amado 2014; Bigby and Araten-Bergman 2018; Harlan-Simmons et al. 2001; Bigby and Craig 2017). Some focus on matching with a community member, who may be a formal volunteer, and nurturing a developing relationship, and others on introducing the person to places or groups where they are likely to meet people with common interests to their own. Programs rely on skilled staff, the rights contexts, or catalysts for making connections, and what Amado (2014) calls the art of connecting. This, she suggests, needs sensitivity to the individual with intellectual disabilities, the community members involved, and the types of matches being established between these two and requires: • Firm beliefs by staff or other supporters that people with intellectual disabilities have much to contribute, and community members much to gain from the contributions. • A sensitive connector or asker who can identify community members receptive to being involved with a person with intellectual disability, be aware of the type of support a community member might need to be involved and the nature of their concerns, and know when to move on to finding more accepting community members. • A primary focus on people rather than activities that means asking who the person will get to know in a situation, or regularly going to the same community places where the same community members will be seen rather than frequenting places such as restaurants or shopping centers where people go with companions or friends rather than to make new friends. • Using activities to create meaningful engagement between individuals with intellectual disabilities and community members who show a willingness to get to know that individual better. • Persistence, not giving up but trying different alternatives until successful.

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Fig. 2 Components highlighted in community participation as social relationships

There is a remarkable absence of evidence about the success of programs in assisting the formation of relationships, the nature and longevity of relationships formed, the people whom programs target, and the design and practice of programs. Two types of programs are described in the following sections, Circles of Support and Befriending or Matching. A third type, Community Connectors, uses very similar strategies to programs that provide opportunities for convivial encounters, that is, working with individuals to find groups or places where they might share common interests with other people (Harlan-Simmons et al. 2001). There is a difference however in underlying purpose, and emphasis is given to developing longer term relationships that become firmer and less place based over time compared to those that characterize convivial encounters. Figure 2 illustrates the emphasis given to the component of social interaction by programs that understand community participation as social relationships, but which also recognize the significance of activities and place in facilitating these.

5.2

Circles of Support

Some programs seek to form and maintain a Circle of Support, which is a group of people, who come together on a voluntary basis, with a degree of formality, to

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support a single individual through relationships of trust and intimacy (Macadam and Savitch 2015). As well as supporting and maintaining new or existing social relationships with community members, Circles of Support may support the person and/or their family with decision-making and planning for the future (Neill and Sanderson 2012; Wistow et al. 2016). An extensive gray literature describes the outcomes of various models for organizing Circles of Support through descriptive reports and personal stories. There is, however, little empirical evidence about quantifiable outcomes, practice, or the organizational strategies they adopt (Bigby and Araten-Bergman 2018; Wistow et al. 2016). An Australian study demonstrated the considerable variability between Circle of Support programs, particularly prerequisites the person must have to become involved, program strategies, and the required investment of program time (Bigby and Araten-Bergman 2018). For example, two of the three programs studied only worked with people who had a strong primary network member such as a parent. These programs aimed to support that primary network member to build and maintain a Circle of Support. The formation of Circles of Support was regarded as family business and the programs offered time limited support to expand, strengthen, or formalize a person’s existing network and equip circle members as facilitators, able to maintain the circle over time. The tasks undertaken by program staff included providing information about Circles of Support, relationship mapping, supporting the process of inviting people to formal meetings, planning agendas, facilitating early meetings until the role could be taken over by a circle member, and supporting the operation of the circle during the first year. In contrast, another program, though similarly badged, had a quite different approach and broader target group. It was less focused on families and conceived Circles of Support formation as service business. Early in its development, the program had identified three different types of circle building offerings depending on the nature of the person’s existing network which were described as either foundation, building, or thrive circles. Accordingly, it worked to build foundation circles with people who had none or very few informal social relationships and were prominently supported by paid staff. As the program coordinator said, It’s where you literally cannot find three people that will be someone’s circle. . . .usually no one knows anything about that person outside of the services they attend, you will not get anyone to run a circle of support for them. (Bigby and Araten Bergman 2018, p. 31)

The work was intensively focused on first building a relationship and getting to know the person and then finding others who might be willing to become more involved in the person’s life and join a developing Circle of Support. As the coordinator explained, I literally stalked Fred for the majority of his activities . . ...So I went along and I sat next to him and I would ask the staff who talk to him on a daily basis. . . which staff talk to him often, which residents or which people here talk to him? (Bigby and Araten Bergman 2018, p. 32)

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Tasks of recruiting potential members and facilitating incipient circle meetings fell to the coordinator, who estimated that each meeting might require up to 10 h preparatory and follow-up work. In early circle meetings, most time was spent deepening the relationships between the person and others who were becoming more involved in their life but who knew very little about them. The coordinator said, for example, You have a circle meeting, you find out that every single person in that circle only knows the tiniest little miniscule thing about that person, so you spend the next four or five months just pretty much socializing. (Bigby and Araten Bergman 2018, p. 34)

For people who had some people in their network, but no one willing to commit to being a primary supporter and take responsibility for the circle, the program worked on building circles and the capacity of their social network members to become involved. As the program manager remarked, . . .it’s like they have that base to have a really good circle but they’re just not there yet so they’re in the building stage, for instance George’s circle, he does have people that know him very well, does have social networks, may or may not be family, but no one that is going to dedicate themselves to running a circle of support so we needed to build a relationship for them to be involved. (Bigby and Araten Bergman 2018, p. 31)

For people who had an existing network of informal relationships, the focus of work was on supporting circles to thrive, and similar to that of the other two programs, to introduce structure and formality into the existing support network, strengthen relationships, and provide formality and structure to the circle. Figure 3 illustrates the different processes used by this program depending on the person’s existing social network. The gray literature on Circles of Support contains anecdotal stories of success but does not adequately consider the specific groups of people whom programs target (Wistow et al. 2016). Somewhat ironically, the Australian study described above suggested that most Circles programs worked with people who already had a network of informal relationships and strong primary supporters. While demonstrating the potential benefits of the Circles of Support concept to people without existing networks, the study flagged the longer-term involvement and more intensive work required, and thus higher costs, of working with this group. In individualized service systems, such as the NDIS, there is growing potential to purchase a service or time of a skilled facilitator to assist in building a Circle of Support, but there needs to be explicit recognition that the investment of time and costs required depends on the nature of the person’s existing network and more rigorous exploration of the tasks and skills required for this type of work.

5.3

Befriending and Matching Programs

Befriending and one to one matching programs also vary in design and the target groups of people with whom they work. Most programs of this nature recruit and

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Fig. 3 Different focus on work for Circle of Support Program depending on existing type of social network

train volunteers, match them with an individual with intellectual disability and support the developing relationship (Amado 2014; Bigby et al. 2018b; Bigby and Craig 2017; Fyffe and Raskin 2015). Examples of two quite different programs are given below.

5.3.1 Gig Buddies This program recruits volunteers interested in going out regularly to a music or sporting event with a person with intellectual disabilities. They are recruited through advertising, social media, and corporate organizations and given one day of training in small groups which includes information about the aims of the program, the

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disability service system, distinctions between volunteer and support worker roles, and potential challenges such as discrimination. Volunteers are expected to commit to the program for 12 months and to spend 8–10 h a month going out with the person with whom they are matched. In parallel, people with intellectual disabilities are recruited to the program and interviewed to ascertain their interest it and the types of music or sport they enjoy. The linchpin of the program is matching a volunteer with a person with intellectual disability, on the basis of common interests, age, and geographic location. It can take some time to find a match and some people may wait many months. Both parties must agree to the match, and once an initial meeting has been facilitated by the staff, it is up to the pair to determine how the relationship develops. There are few formalities in the program, as one volunteer noted, When you break it down, it’s simply about two people going to have some fun and getting to know each other and getting the other person out into the world and getting to do stuff that they might not get to do otherwise. It’s just the ease of it. I love that I can just text [participant’s] mum and just say, “Hey, what is [participant’s] week looking like next week. Let me know and I’ll book something then”. I don’t have to jump through hoops or, like, regulation. (Bigby et al. 2018b, p. 62)

Program staff are available to provide support if requested by either party, though this offer is seldom taken up. The program organizes some group outings and events for those people waiting for a match, which are also open to matched pairs. Notably, this program only included people with mild intellectual disabilities, as a staff member said, In an ideal world, you would include everybody, and there have been times where we’ve had to say if there’s no communication, it makes it really hard. Because one thing we say to volunteers is we don’t ever want you to be a support worker, because that changes the relationship. The relationship is a friendship. (Bigby et al. 2018b, p. 61)

At the time of the Gig Studies study, no quantitative data were available about the longevity of the relationships formed, but many participant descriptions of them suggested they reflected many of the features of friendships.

5.3.2

Matching a Volunteer with a Person with Severe Intellectual Disability A case study of a friendship between Heather, a women with high and complex support needs, and Dorelle, a retired bookkeeper, provides insights into the art of connecting, as well as the time and skills needed to develop friendships intentionally (Bigby and Craig 2017). Heather and Dorelle’s relationship had lasted eleven and a half years. It had been seeded and nurtured by a disability support organization which estimated it had taken more than three and half years to grow into an autonomous friendship with its own dyadic boundary and no longer be reliant on the encouragement of others. Their friendship had the hallmarks of shared interests, an inherent reciprocity, mutual caring, and identification of the good of the other (Vernon 2005).

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The bond between Dorelle and Heather was orchestrated by Heather’s key worker, Francesca who was remarkably skilled in making social connections. Dorelle had been volunteering as a bookkeeper in the organization, when she met Francesca who had a hunch that she and Heather would be compatible and mutually benefit from having another person in their lives. She organized an initial meeting. As Francesca remarked, I knew she [Dorelle] had no one at home and there was more for her within this organization. . .I am a bit of an opportunist like that . . .Dorelle recalled: Francesca asked if I would mind sitting with Heather and a couple of others while she did some timesheets or something. (Bigby and Craig 2017, p. 185)

Francesca gradually drew the two together through shared activities, inviting, for example, Dorelle to look after people’s bags at the swimming pool and then encouraging her to get in the water and swim with Heather, assuaging her nervousness by being in the water next to her. Francesca supported Dorelle to gain confidence and skills she needed to interact with Heather who did not use words, and by spending time together, they learned to communicate with each other. Francesca used interpretation of cues and behaviors rooted in real contexts to teach Heather about providing support, ranging from, initially, “how to hold her head up in the water” to how best to manage Heather’s seizures and understand the subtlety of her communication. She said: Dorelle understood that she had to be Heather’s voice when she took her somewhere. I used to show her, like, if people in the group were talking to Heather through Dorelle then very gently, of course, I used to say to Dorelle just put your head towards Heather and ask her directly. Then others will do that too. Redirect what they say. Then people will learn to talk directly. (Bigby and Craig 2017, p. 185)

As they spent more time together in activities that Heather had indicated she enjoyed, their relationship began to separate from the organization, eventually becoming an independent friendship. The context as well as the skilled connector helped to facilitate the relationship. First the culture of the organization promoted positive expectations about the potential for inclusion of people with intellectual disabilities and provided an attractive environment for volunteers with altruistic motives, who wanted to be part of something meaningful. Second, the organization allocated specific resources to the practice of supporting connections, though the employment of a volunteer manager tasked with building confidence, rapport, and a sense of belonging among volunteers, and directly approaching and supporting older female volunteers who often lack confidence in their skills (Warburton et al. 2007). The case study suggests three stages in the development of development of relationships from volunteering to friendship which are summarized in Table 2 together with the supportive features of each stage. This case study is one of the rare reports that describes in some detail the practice involved in successful matching and nurturing an intentional friendship between a volunteer and a person with a more severe level of intellectual disability. The scarcity

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Table 2 Stage in relationships development and supportive features Stages of relationship Introduction (17 months) Attraction Affection Bonding

Consolidation Familiarity and time together Contextual skills Autonomy (8.5 years continuing) Dyad boundary formation Advocacy Independent activity

Supportive features Hospitable, appreciative environment that values and supports volunteering and contributions of people with intellectual disabilities Opportunity for meaningful contact Connector role of worker Individualized coaching Shared activity Support over time Individualized and personalized planning Inclusive planning and decision making processes Shared vision prioritizing relationship building (taking risks) Worker as soundboard and back up support

Core feature of the relationships Engagement in and commitment to hands on volunteering

Confidence, skill formation, sense of personal expertise, and competence Friendship

Adapted from Bigby and Craig (2017)

of such examples suggests the need for demonstration programs to further illustrate the potential for such programs, capture good practice and disseminate it more widely.

6

Community Participation as a Valued Sense of Belonging and Identity

This conceptualization of community participation emphasizes participation in dedicated groups and activities for people with intellectual disabilities, from which participants derive a valued sense of belonging and identity. As well as having immediate gains, this new sense of belonging and identity may act as a catalyst for recognition of a status or identity that leads in turn to social interactions with people outside the group or activity who do not have a disability. Activities are important in this conceptualization, but only those that lead to a new sense of identity that is valued by the person and acknowledged by groups in wider society. These ideas are grounded in the work of geographers such as Hall (Hall 2004, 2013; Hall and Wilton 2011) who suggested that groups for people with intellectual disabilities can be places for building friendships and connecting to others in the mainstream world. Identifying that they act as “alternative spaces, safe places and networks, where new forms of normality and inclusion can be shaped” (Hall 2004, p. 304). Hall and Wilton (2011) proposed, for example, that membership of a drama

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group for people with intellectual disabilities acted as a vehicle for inclusion through creation of a strong sense of belonging within the group and social connections into the wider world of community arts. Clifford-Simplican et al. (2015) used radical democratic theory to take these ideas further, suggesting the possibilities for people with intellectual disabilities, just like other minority groups, to belong to multiple communities, based on self-identity, interest, and preference. Using Mouffe’s ideas of democratic paradox and counter publics, wherein the creation of us always implies a them, she suggests that exclusion creates new and valued roles and identities, associated with challenging it, for those who are excluded, that is, “a sense of belonging emerges against a backdrop of exclusion” (Clifford-Simplican and Leader 2015, p. 724). For example, being an advisor or representative of people with intellectual disabilities on reference groups monitoring initiatives to further social inclusion may create a sense of belonging or identity as an advocate or adviser, and also lead to status and recognition by others as being part of wider mainstream advocacy or policy communities. Indeed, several studies have identified the significant potential of self-advocacy groups to create new identities for people with intellectual disabilities, such as being an expert or selfadvocate, that also bring new status and social connections outside the group (Frawley and Bigby 2015; Anderson and Bigby 2017). The practice of mandating co-production in the conduct of Information, Linkage and Capacity grants funded by the NDIS and representation of service users in machinery of governing disability support organizations may be facilitating identities as “experts” among people with intellectual disabilities who are involved in such projects and is worthy of further exploration. At first glance, this conceptualization of social participation is antithetical to theories of normalization and social role valorization. Proponents of these theories argue it relies on singling out and bringing together people based on their characteristic of having an intellectual disability rather than their interests. It is sometimes argued, for example, that it would be preferable for a person interested in drama to participate in a mainstream group than one for people with intellectual disabilities. This approach tends to ignore the sometimes hostile cultures and significant work, discussed earlier in the section on convivial encounters, that is often required to support a person with intellectual disability to participate in a mainstream group, as well as imposing ideologically based preferences about activities on people with intellectually disabilities that further normative ideals (Brown and Smith 1992). There is a relatively small base of evidence, primarily in respect of creative arts and sports activities, which suggests success of programs that aim to further community participation by creating opportunities for people with intellectual disabilities to develop a valued sense of belonging and identity (Bigby et al. 2018b). The theory of change informing these program is that participation in certain types of activities creates new identities such as expert, advocate, artist, craftsperson, singer, actor, or athlete for people with intellectual disability, and consequential opportunities for social interactions with peers as well as people without disability who may have similar interests, be they members of an audience, purchasers of items such as artwork, or members of related clubs or societies. Figure 4 illustrates the emphasis

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Fig. 4 Components highlighted in programs that understand community participation as a valued sense of belonging and identity

given by this type of program to activities with place being as less important and often segregated, and social interaction are seen as the beneficial consequence of engagement in activities and facilitated by the derived sense of belonging or new identity.

6.1

Approaches to Supporting a Valued Sense of Belonging and Identity

As suggested, examples of programs to support this type of community participation often relate to sporting or creative arts activities and although the context differs used similar approaches. These usually involve: • Establishing a dedicated group, team or program for people with intellectual disabilities who are interested in developing their skills and talents, or simply enjoy participating in an activity, for example, a community choir (Darragh et al. 2016), a program for artists with intellectual disabilities (Anderson and Bigby 2020), sporting clubs (Thomson et al. 2020).

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• Organizing regular practice or coaching sessions. • Members participating in public facing events such as performances, exhibitions, competitions in venues that will attract members of the public with similar interests. • Organizing opportunities for group participants to work together with experts without intellectual disabilities, such as a guest coach from mainstream football team or joint projects with well-known artists. Two examples of this type of program are described in the next section.

6.1.1 The Arts Project This program provides a studio in a busy suburban hub where people with intellectual disabilities are supported during the day on a full- or part-time basis to produce art, develop a sense of belonging to the arts community, and identities as working artists. The Executive Director summed up the nature of the program: We’re not a disability organization, we’re an arts organization, where the artists happen to have a disability. That’s how I prefer to look at it. So, we don’t bang on about the disability, we bang on about the art. (Anderson and Bigby 2020, p. 5)

The staff are all artists with fine arts degrees rather than training in disability or art therapy. Their role is to create an environment where participants can explore different mediums, develop their skills, and choose the type of art they want to make. A staff member explained how participants, who are referred to as artists, are regarded, and the difference between an art class and the art studio approach of the program. She said, they are seen as people that have their own distinct style and they are developing a strong arts practice of their own, alongside their peers, the mainstream artist peers in the wider community. So rather than it being like a classroom situation, where we are all doing the same thing today, it’s about them having their own arts practice in an arts studio, and we are just facilitators who are supporting them. (Anderson and Bigby 2020, p. 7)

The program expected all the staff to engage with the artists, providing support using hand in glove practice, which as another staff member explained meant they were, Not to be hands on, interfering, but supporting and sometimes being available to share specialist knowledge . . . about materials, techniques . . . (Anderson and Bigby 2020, p. 7)

The program organized an annual show featuring exhibits by all of the more than 100 artists in the program. During the year, other shows and solo exhibitions featured some of the more experienced artists. Art works were purchased by the public, commissioned for book or report covers, and also exhibited in other galleries, as part of the growing interest in Outsider Art. The commitment to enable individuals to produce art and be part of the creative but commercially competitive arts community

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meant that while everyone made art in the studio, not all were selected to exhibit their work in solo exhibitions or take part in other activities. This type of program is very different from a program that teaches art to people with intellectual disabilities and was designed around the specific conceptualization of community participation as belonging and identity. Incidentally, it also generated peer friendships within the confines of the studio and connections to the locale in which was situated.

6.1.2 The Ringwood Spiders The club is an example of a sports program where people with intellectual disabilities play sport, in this case football, as part of a large league for people with intellectual disabilities, the Football Integration Development Association (FIDA). The club offers the opportunity for men with intellectual disabilities to regularly train with a team and play in a football league that is embedded in the mainstream Australian Football League (AFL) or to volunteer in the club. The rules of game are adapted and flexible in terms of number of players, and the competitive aspect of the game is downplayed in favor of skill development and friendship. The Spiders have 30 players and an ethos of being open to anyone who wants to play. As a committee member remarked, Pretty much what we do if someone’s interested is say, “come down, join in, and see if you like it”. . .We probably have around four or five guys who come down to training and won’t play competition and that’s fine. I would hope that there real barriers to involvement. When it comes to playing, though, we have had one or two where we’ve said no to them playing competition because their disability was such that they don’t have the awareness and. . .we assessed there would be risk of injury. (Bigby et al. 2018b, p. 124)

The clubs train on a public football oval and share facilities with a mainstream football club. They are sponsored by several local businesses and the local council, and managed by a voluntary committee. The club coach organizes training and matches, and there is often a guest coach from a mainstream club. The committee organizes regular social activities, and the teams play in exhibition matches in the intermission of AFL games in front of very large audiences. Activities, such as volunteer coaching and joint events with mainstream sporting clubs, and the shared use of a mainstream club’s facilities, bring Spiders members into contact with others with an interest in football and sport. Both parents and players talked about the club acting as an important catalyst for social connections to the wider world of football. The international Special Olympics program is the largest of the dedicated programs of sport for people with intellectual disabilities and runs groups and competitive events for athletes with intellectual disabilities often alongside mainstream events. Like the FIDA league and Ringwood Spider, it offers opportunities to play sport as well as to be socially included. A recent review of nine studies of these types of programs found that stake holders agreed that participation promoted social inclusion, that athletes felt they belonged and were accepted in a community of their choice, and had opportunities to visit places and meet people they otherwise

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would not have. Nevertheless, the authors concluded there was “still very little evidence that participation in these programs improved community participation and inclusion for people with intellectual disability outside the program” (Thomson et al. 2020, p. 9).

7

Conclusions and Future Directions

This chapter has argued the importance of bringing conceptual clarity to the design of programs seeking to implement policies of social inclusion and of support that acknowledges the unique needs of people with intellectual disabilities. It has illustrated differences in the types of programs and strategies that flow from three ways of conceptualizing community participation, and presented evidence about the design and implementation of programs. In doing so, attention has been drawn to the relatively scant evidence on which to build effective and efficient ways of supporting participation for people with intellectual disabilities. And also the limited focus of programs on people with more severe and profound intellectual disabilities. The chapter concentrated on three types of programs or interventions, creating opportunities for convivial encounters, for friendships and for a valued sense of identity and belonging. These interventions focus predominantly on supporting individuals with intellectual disabilities one at a time, to be part of an activity or place or social interaction, recognizing their need for skilled support to participate. But these interventions also pay attention to creating situations where convivial encounters might occur, friendships might develop, and new identities develop, through enabling environments and the people without disabilities to both welcome and facilitate social interactions and participation by people with intellectual disabilities. There are no simple solutions to further community participation, it is skilled work that must happen on multiple levels, at the individual, and the organizational and the broader societal. The language of individualization sometimes runs the risk of only valuing in the moment visible support, the performance of supporting an encounter, and rendering the invisible backstage or behind the scenes work of creating opportunities for community participation, identifying and evaluating a groups’ potential to welcome a person with intellectual disabilities as an equal member. The programs reviewed in this chapter suggest the work of supporting community participation is both skillful and multifaceted. It is best done by programs, and teams with diverse skills, where collective community building can occur for many people as well as individualized support for every person. The chapter has highlighted the importance of a person-centered approach in thinking about and supporting community participation, one that takes into account individual preferences and choice. Individuals will want to combine the three components of community participation differently, as shown in the heuristic Figs. 1, 2, and 4. However, individuals may seek out different types of community participation, piecing them together into a regular routine; for example, being a member of a choir run at the local community center, a netball league for people with intellectual disabilities, and going out once a month to a concert with a volunteer

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who has become a friend. Most people with intellectual disabilities will need people who know them well to help with choices and it behooves community participation programs to be clear about what they have on offer.

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Dementia and Social Inclusion-Exclusion

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Ashley Carr, Simon Biggs, and Irja Haapala

Contents 1 Introduction: Dementia and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Social Exclusion, Disadvantage, and Older People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Researching Dementia in The Public Domain: Impacts and Perceptions . . . . . . . . . . . . . . . . . . 3.1 Social Exclusion, Social Disadvantage, and Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Public Perceptions and “Othering” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Implications for Research, Practice, and Public Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter outlines the connections between dementia, social disadvantage, and social exclusion. It draws on original research to discuss the conceptual and practical implications of applying a social inclusion lens to the issue of dementia. The authors argue that social inclusion-exclusion is an active process arising from the social experience of dementia, although it also interacts with demographic characteristics, and that the effects of dementia need to be understood as an interpersonal and interactive process. As exclusion itself is a compromised position, it raises the question of inclusion into what sort of society. It nevertheless has face validity with many of the carers and people living with dementia in the studies covered here. Drawing on a selection of research, alongside the policy and practice implications, it addresses both the benefits and challenges of conducting research with people living with dementia as well as their families, friends, supporters, and carers. A. Carr (*) · S. Biggs (*) · I. Haapala School of Social and Political Sciences, University of Melbourne, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_37

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It shows ways to counter social exclusion and promote the continued participation of people with dementia in daily life, decision-making, and a political voice. Keywords

Dementia · Attitudes · Social exclusion · Social participation · Care · Social disadvantage

1

Introduction: Dementia and Social Inclusion

Dementia is an umbrella term covering different types of neurological conditions affecting the brain (Winblad et al. 2016). The most common form of dementia is Alzheimer’s Disease followed by the vascular dementias. Globally, it is estimated that about 50 million people are living with dementia at present (Alzheimer’s Disease International 2021). Prevalence rates are similar across developed countries, with approximately 1 in 10 people aged over 65 years estimated to be living with dementia (Prince et al. 2015). In Australia, this equates to around 459,000 individuals. In North America, it is estimated that 5.8 million are living with dementia (Alzheimer’s Association 2019). It is expected that without an effective cure, the number of people living with dementia will continue to grow, with the biggest increases anticipated to occur in lower- and middle-income countries (WHO 2020). There has been much discussion and debate about the economic impacts of such growth, though increased attention has been directed toward what dementia means socially and within communities. Although most commonly associated with memory loss, dementia covers a broad range of symptoms, which can include difficulties communicating, problems with visual and spatial awareness, and complications with complex thinking, which can affect social functioning. However, how these symptoms impact social belonging and connection requires a wider lens beyond neurological processes and cognitive impairment. Indeed, the impact of dementia has been shown to be mediated by various factors, including age or life stage, access to help and care, social identity, and status and relationships (Biggs et al. 2018, 2019; Hulko 2004). Applying a social model to dementia, similar to that developed in connection to disability and mental illness, provides a broad framework from which to analyze social practice rather than the physical or cognitive impairment itself. Such an approach prompts not only a re-think of dementia within the social context, but also a call for change in the ways that research, practice, and social behavior take place. There are five reasons why a social inclusion-exclusion framework is relevant to understanding of dementia. 1. There are more people with dementia. This has arisen due to the increasing numbers of older people as a proportion of the general population; while the likelihood of developing dementia has fallen among older people, the total number of people with the condition is increasing (Matthews et al. 2016). As such, people with dementia are a growing part of society, with increasing concerns about the cost and social implications of such growth.

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2. The prospect of finding a cure has diminished and has proven much more complex and difficult than first expected. This has precipitated renewed interest in helping people to manage the diverse symptoms and consequences of the condition in a range of settings (Prince 2017). Social inclusion is one of many responses to helping people manage their condition and its effects on those around them, with implications for formal care arrangements and staffing. 3. The shift toward care in the community has made people with dementia not only more visible but also encouraged greater emphasis on the maintenance of their social roles and relations. This includes the provision of care in the home, the reliance on family members as care-givers, and a growing emphasis on specific care approaches, such as person-centered and relational care. The development of dementia-friendly communities and related practices adopted mainly at the local level emphasizes principles of social inclusion. 4. Attitudes to ageing and dementia have been shown to impact social engagement and positive or negative identities. When associated with ageing, dementia potentially amplifies fears of growing old (Biggs 2018). As such, stigma can lead to social exclusion, wherein people with dementia struggle to interact successfully in society and maintain social relations. Dementia is a chronic and progressive condition, and although strongly associated with permanent care, incapacity, and finally death, the period between first symptoms, diagnosis, and the latter stages of the condition is protracted. During this time, people with dementia can and do continue to lead normal lives and remain socially engaged. What becomes apparent through studying dementia and social inclusionexclusion is that neurological challenges alone do not determine the degree to which people with dementia are socially excluded. Rather, social attitudes and social relations prove critical in facilitating social inclusion-exclusion. 5. Following the wider disability movement, people with dementia are discovering a political voice and have advocated to have dementia recast as a disability (see, for example, Dementia Alliance International: www.dementiaallianceinternational.org/). This refocuses discrimination and social exclusion as a consequence, in part, of social attitudes. It also implies that professional voices are no longer dominant and need to be considered alongside the voices of people with dementia, their carers, and supporters. Furthermore, such a reconceptualization provides opportunities for improved care and support, an increased focus on rights and a catalyst for changing social attitudes. Taken together, these points indicate a progressive reframing of dementia, both within service systems and within wider society. A social inclusion agenda can both reveal and promote the positive effects of this reframing. Community attitudes toward dementia have changed significantly over time, as has the way in which people living with dementia are cared for and supported. The general trend, which can be observed within mental health (Hannigan 1999), has been a gradual shift away from an institutional framework or mindset to one in which the personhood and social situation of people with dementia has gained traction. With respect to dementia, Tom Kitwood’s seminal body of work on personcentered care ushered in a focus on the psycho-social dimensions of the

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phenomenon, including social relations, communication, and the varying and often unmet needs and desires of people with dementia (see Kitwood 1997). More recent developments have emphasized relational care and ongoing support in people’s homes and communities (Macdonald 2019); others have applied a citizenship lens to reinforce the inherent social and political rights of people with dementia (Bartlett and O’Connor 2007). While residential or nursing home care remains important for large numbers of people living with the condition, there has been a growing focus on care in the community. Indeed, most people living with the condition reside in their own homes, not in institutions or aged care facilities (AIHW 2012).

2

Social Exclusion, Disadvantage, and Older People

Social exclusion has become central in the study and policy response to social disadvantage and a key concept for examining social disadvantage in later life (Walsh et al. 2017). Social disadvantage can be understood as a lack of resources (Heap et al. 2013) and the limitations preventing social participation, which follow (Vinson et al. 2015). Social exclusion is somewhat broader than social disadvantage (Smyth 2010), though arguably the concept, particularly in relation to older adults and people living with dementia, lacks consensus and requires significant theoretical and methodological development (Biggs et al. 2019; Pinkert et al. 2019). It has also been suggested that there has been more focus in research on exclusion rather than inclusion, with implications for policy and practice (Smyth and Buchanan 2013). A key benefit of the framework, however, is the emphasis on inclusion-exclusion as dynamic, processual and relational, rather than as a fixed state. In a review of the concept and its application within social gerontology, Walsh et al. (2017) identify social exclusion in old age across six domains: neighborhood and community, social relations, services, amenities and mobility, material and financial resources, socio-cultural aspects, and civic participation. These domains are not mutually exclusive but multi-dimensional. Furthermore, individuals can experience different forms of exclusion over time and may experience inclusionexclusion differently depending on the setting in which they live. Social inclusion-exclusion also intimates a process that is both general and specific. Bartlett (2003) describes the process of exclusion in general terms, “whereby people gradually lose their status in the social world,” but also specifically in relation to practices within institutional care, such as being physically excluded from the outside world or not being included in decision-making. The relational qualities of social inclusion-exclusion occur within established power relationships. This is perhaps most evident in formal care settings and in interactions with health care systems and professionals. In these settings, processes of exclusion have been shown to relate to expert knowledge, the status of health and social care workers, access to resources, such as diagnosis and formal care, and funding rules (Pinkert et al. 2019). Building on these developments, the following sections discuss two areas of research relevant to social inclusion-exclusion and dementia: the impact dementia

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has on individuals, socially, materially, and psychologically, and the role of social attitudes, “positioning” or “othering.” The primary concern is with the interpersonal and this and thus the meaning created between people, even when one of these people may not purposefully create interpersonal meaning. Therefore, what is of most interest are processes of inclusion-exclusion occurring through social interactions and the role social attitudes play in conditioning such interactions.

3

Researching Dementia in The Public Domain: Impacts and Perceptions

The research discussed in this chapter was conducted as part of the Dementia in the Public Domain research project of the Cognitive Decline Partnership Centre. The center itself was a collaborative effort involving researchers, policy-makers, the care industry, and service users to improve the care and quality of life of people with dementia. Two areas of this research – the impacts of dementia and age perspectives on dementia – are elaborated below, followed by a discussion on the implications for future research efforts, practice, and policy. As part of the 3-year study, interviews were conducted with self-selected individuals with direct experience of dementia, including those living with the condition, their family or informal carers, and healthcare and other professional groups, half of whom did not have a connection with dementia. In-depth, semi-structured interviews were conducted with 111 participants, representing five distinct perspectives on dementia: the voice of people with dementia (n ¼ 19); carers (n ¼ 28); health-care professionals (n ¼ 21), including nurses, general practitioners, allied health professionals, and care service directors; social work professionals (n ¼ 23), including care coordinators, community support workers, and care managers; and service professionals (n ¼ 20), including hair-dressers, e-learning and media consultants, small business people, librarians, and hospitality staff. In total, 28 men and 83 women were interviewed and all of the people living with dementia were living in the community; none were residing in residential or permanent care settings. For the research on impacts analysis of the interview transcripts focused on the question – “what are the most important impacts of dementia?” For the topic on age perspectives, analysis focused on questions relating to what participants initially thought about the term “dementia,” and what they considered other age groups or generations perceived dementia to be.

3.1

Social Exclusion, Social Disadvantage, and Dementia

To date, the relationship between social disadvantage and dementia has been largely based on its connection to other sources of inequality, such as social class, gender, and ethnicity. The public health literature in particular correlates the risk of developing dementia with particular demographic and socio-economic factors. For example, Winblad et al. (2016) show that many of the risk factors associated with

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dementia cluster in lower socio-economic groups. This, as other studies suggest, is due primarily to the association between deprived areas and a higher prevalence of cardiovascular risk factors in dietary intake, obesity, depression, lack of physical activity, smoking, low levels of social participation, and lower levels of education (Basta et al. 2008; Ervin et al. 2015; Wright et al. 2016). Characteristics associated with higher socio-economic status, such as occupational status and education attainment, correlate with lower prevalence levels for dementia (Winblad et al. 2016; Strand et al. 2015). These findings conflict with suggestions in public discourse that dementia does not discriminate; that as a disease entity and regardless of social class, economic status, cultural background or gender, dementia can affect anyone. Indeed, the theme of Dementia Australia’s Dementia Awareness Week 2019 addressed the impacts of discrimination on people with dementia and advocated the need to change social attitudes (see Dementia Australia https://www.dementia.org.au). In this context, the solution suggested resembles a social model of disability (Oliver 2013); if the condition does not discriminate, it must be individuals and societies that do. This creates a space for individual and collective action. Factors such as social class and background cannot be ignored, however. They have been shown to intersect with dementia in complex and often unexpected and ways (Jones 2017). Hulko (2009) found that in published accounts the typical person with dementia or Alzheimer’s was white, middle-class, well-educated, and married. Indeed, examining the history of Alzheimer’s, Ballenger (2006) suggested that an important component behind making Alzheimer’s Disease a national health priority in the United States of America was the appeal to fears of the middle-class man struck down by the condition. Hulko (2009) further argues that the experience of dementia is mediated by one’s social location, with the privileged more likely to experience dementia negatively, and those in disadvantaged groups more likely to take it in their stride and feel less stigmatized within local communities. Put simply, those from privileged backgrounds have more to lose in terms of resources and social capital, whereas those experiencing socially disadvantage are potentially inured to hardship and thus better able to cope with the social impacts of dementia (Hulko 2009). Nonetheless, the interplay between dementia and forms of inclusion-exclusion is complex, involving multiple, intersecting factors operating across micro, meso, and macro levels. Moreover, as Bartlett and O’Connor (2007) argue in relation to dementia, social inclusion-exclusion cannot be understood as an either-or phenomenon, but rather as heterogenous, with experiences differing according to the individual and social context. Others have focused on stigma and ageism as key factors explaining the social exclusion of people with dementia (Phillipson et al. 2012; Forbes et al. 2011), which may materialize in forms of avoidance and discrimination. Labeling is one example of the way in which stigma is enacted and its impact on people with dementia is an issue of major concern for dementia advocates (Swaffer 2015). The construction of the “other” through language usually comes with negative connotations. However, it is possible to identity forms of positive othering. Nonetheless, the presence of stigma through labeling reflects social attitudes, which in many cases have been identified as hostile or unaccepting toward people with dementia. As such, changing social

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attitudes has become a priority for developing more inclusive approaches to dementia. Some dementia-friendly community initiatives, for example, promote more positive and accepting social attitudes in an attempt to re-position people with dementia as valued members of their communities, neighborhoods, and families (Phillipson et al. 2018). The argument advanced in this chapter suggests that, even when inequalities are taken into account, dementia generates unique forms of disadvantage arising from its particular impacts, as well as from social attitudes. To explore this, a social inclusion-exclusion agenda is advanced, showing how an amalgam of social positioning and forms of exclusion specific to dementia leads to a re-emphasis on the impacts of dementia itself rather than social location or external factors alone.

3.1.1 Researching the Impacts of Dementia Our research identified six different areas of impact. These included: social, material, service provision, psychological, carer role, material, and disparity impacts associated with the experience of dementia. The first three and the last follow recent social exclusion research; psychological and carer appear specifically connected to dementia. The impacts are summarized and described in the table below Impact area Social

Specific impacts Social Isolation Stigma Rights Abuse

Material

Work/employment Finance and money Transport Home/housing Accessibility of environment (physical) Access to services Diagnosis Negative experience and value of services Positive experience and value of services Individual, emotional response to cognitive loss Relationship change Planning for the future Situation in comparison to others

Service provision

Psychological

Description Refers to the impact of dementia on social activities and social engagement for PWD and carers, specifically with regard to family relations, friends and networks, and communities. Social impact captures the potential for people living with dementia/carers to experience social isolation, the effects of social stereotyping and labeling, and changes to individual/social rights. Encompasses the negative effects of dementia in relation to work/employment, finances, home and housing, and transport. These material impacts impinge on the ability of individuals to remain socially engaged, and may affect access to goods and resources. Refers to challenges accessing appropriate care and support services as a result of dementia, including diagnosis. Also included are the positive and negative experiences and values of service provision, which can enhance or impede social participation. Encompasses the psychological effects of and emotional responses to cognitive loss for individuals and families and the various coping mechanisms individuals adopt to manage the condition. The impacts of relationship change and difficulties planning for the future are also covered. Psychological impact presents forms of social disadvantage relevant to well being, coping, and psychological stress. (continued)

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Impact area Carer role

Specific impacts Carer disadvantage

Disparity

Age of onset Socio economic status Rural/urban setting Education

Description Often understood as carer burden, the impact of dementia on informal carers, such as partners, families, and children, is well documented and recognized as a key factor leading to social exclusion. The term carer disadvantage is preferred, and may be applied to the demands of providing care, the effects of the caring role, and the barriers to social participation that arise as a result. Encompasses factors traditionally understood to contribute toward social disadvantage, such as socio economic status, education, and location, but also factors specific to dementia, such as age of onset.

Overall, the impacts of dementia were presented largely in the negative, with very few positive reflections. Carers were perhaps the most negative, which is understandable given the highly demanding role they had taken on, often with little choice involved. Carers were also more likely to reflect on the negative consequences of dementia arising as a lack of public understanding. Interestingly, people with dementia were more likely to present positive reflections of their experience, albeit alongside the negative. The most important impact was social: people with dementia, social work professionals, and service professionals mentioned it as the most important impact; health care professionals and carers mentioned it as the second most important. People with dementia and carers emphasized social isolation through a declining circle of friends and reduced opportunities for social participation. The professional groups similarly stressed social isolation, but also mentioned the negative effects of stigma and excluding people with dementia from decision-making. At the same time, carers were inclined to provide more concrete examples of social exclusion via friends dropping off, whereas people with dementia described such exclusion more as a feeling. Significantly, participants tended to account for social isolation as a failure to interact or include people with dementia appropriately rather than as a result of cognitive decline or neurological processes. The service or access to services impact was the second most important impact, and was of major concern for carers. The impacts of diagnosis were especially important for people with dementia and carers, many of whom described it as exclusionary. Following the process of diagnosis, negative experiences were recounted of a complex service system they were forced to navigate, often alone or with little help. There were, however, both negative and positive experiences of service access: most felt that the negative aspects of service provision, such as poor staff or training and rigid services, contributed further to cognitive decline issues; whereas the positive aspects, such as committed caring staff and service flexibility, were seen to reduce the stress people with dementia experienced and enable carers to get on with their lives and maintain positive relations with all involved.

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People with dementia and carers were more likely to mention the material impacts of dementia compared with the professional groups. People with dementia referred to the loss of employment and restrictions on transport as the main material impacts, many of whom recounted losing their job following a diagnosis and having to rely on others to get around in public. Carers found the caring role restricted their employment options and referred to financial problems following diagnosis and the financial strains experienced as a result of ongoing care. When the professional groups did mention material impacts, it was mainly in relation to the costs of care. All groups referred to the psychological impacts of dementia at about the same rate, though service professionals were particularly concerned about it. For people with dementia, coping with change, including cognitive change, was the most important of these impacts; carers were more likely to be concerned with the psychological stresses brought about by relationship change and those emanating from other impacts, such as the material. Other groups empathized with the predicament of both people with dementia and carers to stress what they understood as the most important psychological impacts, such as dealing with cognitive loss, relationship change, and difficulties planning for the future. The caring role impact was an issue for all groups, but particularly for carers, who related the all-consuming nature of caring and changes made to the plans and dreams they had prior to diagnosis and assuming the caring role. There was significant overlap between the impact of the caring role and other impacts. Indeed, carers were found to be particularly vulnerable to inter-linking forms of social disadvantage as the caring role impacted numerous other aspects of their lives. Interestingly, many of the professional groups were of the opinion that carers were more affected by dementia than those living with the condition. There was a high-level of empathy displayed by all of the professional for the impacts of the caring role. Very little mention was made of the social demographic disparity impacts, which possibly suggests that this category, while prominent in health research does not resonate with personal experience. While the impacts are presented as domainspecific, they appear to inter-relate in particular ways, producing unique configurations of social disadvantage and exclusion. For example, the loss of employment for people with dementia had material, social, and psychological impacts, such as the loss of income, the loss of connection through work, and the loss of self-worth. Likewise, the caring role was inter-linked to all other impacts. People with dementia more likely referred to forms of social exclusion emanating from social impacts, such as the loss of friends and social interaction, than to various “disparity factors,” such as socio-economic status. This is because individuals emphasize what is more immediate and directly related to their situation, whereas research on structural factors, which often rely on large empirical datasets, may appear more abstract and/or well beyond the control of individuals. This, however, requires more research, but could also relate to a general lack of awareness of structural disparities. Nonetheless, people with dementia were more likely to refer to social impacts in general or as a felt experience, where in contrast, carers generally provided more concrete examples of being socially isolated from friends and family. Carers more

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readily identified with the impacts of the caring role; unlike people with dementia, they appeared to face a wider range of impacts in connection to their role and more often had to deal with multiple, often external, factors to fulfil the caring role. They displayed a high level of emotional strain at the enormity of the caring role, at the same time as they felt the loss of relationship with their partner or loved one. This was a form of forced of exclusion, wherein carers often expressed the sense of losing or lacking control. Taken together, these findings have various implications for social inclusion and dementia. Firstly, they suggest the validity of a social inclusion agenda from the perspectives of people with dementia and their carers. Social exclusion arises for people with dementia not through a lack of resources alone, but due to processes/ practices that effectively sideline them from meaningful social interaction. The findings also show how social exclusion is multi-faceted, impacting various areas of life, but also experienced differently depending on perspective. In relation to the material impacts of dementia, for example, people with dementia and carers emphasized impacts related to loss of employment and financial strain, whereas the professional groups saw the cost of care as the main material impact. This research on impacts concluded that dementia presents its own forms of social disadvantage. While there was some overlap with social exclusion research into the social, material, and service implications for older adults in general (Walsh et al. 2017), the effects of the caring role and those relating to the psychological and emotional impacts were considered specific to dementia. These are perhaps closely associated with the impacts of mental health issues (Morgan et al. 2007). Nonetheless, the findings suggest a different way of understanding the relationship between dementia and social advantage than is commonly the case: in addition to seeing pre-existing and structural inequalities as risk factors, dementia generates forms of exclusion due to the way it is perceived and responded to in the public domain.

3.2

Public Perceptions and “Othering”

The second area of research, which focused on public perceptions of dementia, explored how the person with dementia as “other” shaped social attitudes. “Othering” has been used in numerous discourses on difference, including gender and ethnicity, to describe the process by which social antagonisms become manifest in interpersonal perception and behavior. The process of “othering” refers to seeing another person as different to the self and has been described in connection to age in the following way: Every individual has the potential to experience discrimination or prejudice based on their age if they live long enough. It produces an ‘othering’ effect that lumps all those considered old into a category defined, first, as different and, secondly as inferior. More importantly, it suggests that all old people are alike, hence obscuring differences that exist among and between older persons.

An age-other, according to Biggs and Lowenstein (2011: xii) is:

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someone who is constructed as being of a different group to oneself, based on age. Age otherness may include aspects of life course, health status, family position, and cohort identity. Whether an individual is seen as being “other” will be affected by the interaction of these elements.

Identifying another person as being an age-other is not necessarily quantifiable, but is phenomenologically real in the sense that difference is perceived to exist by one or both of the actors involved, and people vary in their ability to empathize with someone perceived as other, such as can be caused by dementia related behavior or the act of being diagnosed. In public discourse, dementia, when associated with ageing can constitute an extreme form of othering. Such negative othering can be reinforced by the most vocal and visible, including politicians, celebrities, and others in positions in power, which has implications for policy and popular belief. According to Behuniak (2011), one of the most potent representations along these lines is the association between the behavior of “zombies” in popular culture and the space created for dementia; both evoke horror and disgust leading to “a politics of revulsion and fear.” Swaffer (2014) considers de-humanizing language to include the reference made to “sufferers,” “victims,” and “not all there” when talking about people with dementia to have similar effects. This labeling through language is stigmatizing (Goffman 1963) and can lead to avoidance, facilitating social exclusion.

3.2.1

Researching Public Perceptions and social attitudes Toward Dementia This research focused on an analysis of othering or the process of seeing the other person as different to the group of one’s self in relation to ageing and dementia. Age group differences in perceptions of dementia were analyzed to identify degrees of empathy and understanding of dementia. It covered aspects of public perceptions of dementia, by detailing what participants from different generations initially thought themselves about the term dementia and what they understood other generations might think about it. The research produced some interesting findings on the process of “othering,” and following this, how social attitudes could be more understanding, empathetic, and thus inclusive for people living with dementia. The research demonstrated how perceptions of dementia differ by age-group, often in quite surprising ways, and also in relation to the particular voice perspective. It showed how different age-groups responded to dementia, moderated by their voice perspective and connection with dementia, followed by what different age-groups considered other generations perceived dementia to be. The age groups or generations were defined as follows: younger adults (18–35 years old), mid-life (36–50 years old, later mid-life (51–65 years old) and older adults (66 years old and over). Younger adults’ perceptions were marked by an emotional identification with dementia and for the person experiencing the condition. This was, however, a form of identification generally made from a distance and rarely based on significant personal contact. The person with dementia was perceived as much older and thus removed from the experience of younger generations. Where personal contact was

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stronger, for example, among younger people providing care or in regular contact with a relative with dementia, the emotional reaction was significantly different and much less distanced. Mid-life participants were much more cognitive in their immediate responses to dementia, seeking knowledge about the condition and raising practical concerns about the availability of services. They also showed some interest in preventative approaches that might reduce the risk of developing the condition. Nonetheless, where family contact occurred it prompted a shift in focus to how one might best develop an appropriate response to the “other” and considerations of what would happen if they were diagnosed. Some sympathy was displayed, largely by participants thinking through “what if I developed dementia,” though the responses were primarily intellectual in nature. Later mid-lifers, unlike those in younger age groups, were more likely to refer to interpersonal contact, such as how to communicate with the “other” with dementia. Personal contact was understandably stronger through involvement with a partner or parent with dementia or their own experiences of having dementia. Focus was on engagement and communication: for the carer or person with dementia it was largely about “how do I mix in” and the need for continued social engagement through work and community belonging; whereas for professional groups, it was more practical, as in “how do I communicate” with the “other”. People with dementia in this age bracket were the most likely to communicate the positive elements of their experience. Older adults were much more likely to perceive and understand dementia through their interactions with peers, albeit with some reservations about discussing the topic of dementia in public settings. Older adults with dementia or carers saw dementia as a practical likelihood in daily life, whether for themselves or someone they knew, and generally had little to say that was positive about their experience of the condition. Older adults professionals, on the other hand, were aware of dementia in an “is it me” context, and often found themselves monitoring their own thinking for symptoms of dementia. They were, in turn, likely to know about the day-to-day challenges of dementia. In summary, the evidence revealed benign forms of othering rather than more overt forms, such as avoidance or stigma. Age was an important factor, influencing the form of connection with dementia and the level of empathic understanding that took place. Younger adult professionals tended to practice a form of distanced empathy toward the “other,” whereas those in mid-life mainly took a cognitive viewpoint and late mid-lifers saw the person with dementia as someone encountered in practical communication. In contrast, younger adults in a caring role – much less common given their younger age and corresponding life-course priorities – found little that was positive with current social attitudes and care systems, while older carers were intent on managing the situation. There was a high level of agreement among participants, regardless of their age or connection to dementia, that dementia is perceived negatively in the public domain. Carers were, however, more likely to consider other’s perceptions to be primarily negative, where in contrast, people with dementia and professionals considered there

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to be a range of responses, including sympathy and tolerance. All felt the perceptions of different age groups within the general public was contingent on their connection or closeness to dementia, with close contact expected to promote increased knowledge and understanding. As such, younger adults were expected to be generally disinterested, mid- and later mid-lifers to be concerned about risk and prevention and older adults to be more accepting and more exposed to the condition. Despite some overlap, these results did not match participants’ own responses about dementia; important differences were observed between the actual perceptions of participants and those attributed to the public domain or other age groups. For example, participants did not recognize the importance late mid-lifers placed on interpersonal communication or that older adults were much less likely to accept dementia in later life as might be assumed. Perhaps the most significant outcomes of this research as it relates to social inclusion-exclusion is the notion of “positive” othering. Where negative othering conditions the “other” as a strange and to be avoided, positive othering values difference while recognizing common ground. It involves the consideration of distinctiveness combined with a recognition of what different age-groups and perspectives have in common. Once the distinctiveness of voice perspectives and age groups are recognized, understanding and empathy can follow; valuing the unique contribution individuals bring to social interaction generates respect and in tandem with an identification of commonalities, provides ground for mutual, complementary relationships to emerge. Increased contact or connection with people with dementia is one of the obvious ways to foster this kind of complementarity. Another important factor to emerge from a recognition of distinctiveness is the finding that people with dementia and carers had the desire to remain engaged, included, and understood, while those speaking from a professional perspective wanted to acquire the skills for such engagement, inclusion, and understanding to occur. And although there is a level of ambivalence when it comes to dementia (Miron et al. 2017), most participants were open to learning more about the condition and ways to effectively interact with people with dementia. The research discussed here confirms previous findings showing that closeness to dementia influences understanding (Cheston et al. 2016), though in complex ways where more research is needed. In general terms, knowledge and understanding is assumed to increase the closer one is connected with dementia. There is, however, the possibility that one can be too close to dementia (Biggs 2018); research on dementia care suggests care workers need to balance the emotional demands of their work with a degree of distance, wherein such distance allows care workers to stand back from situations and problem-solve (Bailey et al. 2015); and when care workers view dementia as a kind of puzzle they also create a degree of distance from which to develop solutions based on factors such as the personality of the person being supported and aspects of the care environment, in order to interact more effectively and provide calm if necessary (Carr and Biggs 2020). In both instances, a degree of distance can facilitate an empathic stance.

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4

Implications for Research, Practice, and Public Policy

4.1

Research

The research discussed throughout this chapter shows the value of including people with dementia as active participants in research. As a group, they provided a unique perspective on the impacts and social attitudes of dementia and contributed as all voice perspectives did to the validity of the research findings. More broadly future research should consider what specific areas of expertise and skills distinct groups (as per the distinct voice perspectives detailed in the research findings) bring to the table and how best to integrate such qualities into meaningful research initiatives. The research was, however, restricted in some ways. Only those able to give informed consent participated and there were no participants living in permanent residential care. Nonetheless, research into areas such as dementia, and other conditions for that matter, increasingly promote the inclusion of those with firsthand experience. The ability to adopt and modify research questions and tools to incorporate such experiences is of value, but requires more attention, particularly in terms of study design and research governance. Further attention should also be given to the demographics of the participant sample, including gender and ethnicity. The research discussed throughout this chapter involved a greater number of women representing the voice of professional groups and carers while a larger number of men represented the voice of those living with dementia. Furthermore, individuals from culturally and linguistically diverse backgrounds were not adequately represented in the study sample. A more inclusive approach to research in this area should address diversity in representation. There are, however, many opportunities for inclusion beyond participation as research subjects, including consulting with people with dementia in different stages of research – research design, recruitment, dissemination, and so forth. Nonetheless, given the wide-ranging effects of dementia and the involvement of many different groups, the value of including multiple voice perspectives cannot be understated. There is as well a need for more practical and applied research into the skills needed by different groups to interact positively and empathically around dementia. While research has been undertaken in this area, particularly in formal care settings, there is a need to extend such inquiries into the public domain to services such as shops, banks, and cafes where everyday interactions take place. This has occurred as part of various dementia-friendly community initiatives and, as recommended as a result of the Dementia in the Public Domain project, such considerations should also inform health messaging and public campaigning. More research on the relationship between social exclusion and dementia is also needed, including how particular forms of exclusion become amplified in certain contexts, how structural inequalities relate to disadvantage caused by dementia itself, and how social exclusion for people with dementia is generated at the micro, meso, and macro levels. Social exclusion has been explored here at the level of interpersonal interactions and in light of public attitudes. How interactions and public attitudes are shaped by institutional and policy frameworks would be of great benefit.

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Lastly, while the research suggests that a key priority for people with dementia and carers is to be or remain socially included, it is not always clear exactly what they desire to be included in or not excluded from. People with dementia identified various activities they wanted to be included in, the focus of which depended on the individual, their social situation, and what they had always done as part of their communities. What appears to tie these differences together is the expressed need to be accepted and for a sense of normality to be maintained. People with dementia want most of all to be seen as a normal part of social and public life (Haapala et al. 2018). Nonetheless, inclusion into what sort of society, community, or social group needs further critical reflection.

4.2

Practice

One of the key practical implications relates to the social skills of professionals engaged in caring and support services and which are required to interact meaningfully with people with dementia, their carers, and others close to dementia. This can be extended to professionals working in various service industries, where interaction in normal life activities takes place, including shops, hospitality, and other consumer services. This has been a focus of dementia-friendly community initiatives, some of which have endeavored to train service and other professionals to assist and support people with dementia in everyday life. Given the nature of the condition as progressive, another related consideration is the type of communication and interaction necessary at different stages of the dementia process. Interaction in public settings can be quite different to that required in permanent care settings, where in most cases people experience dementia in more advanced stages. Training around communication skills and interactions may therefore need to be targeted and tailored to particular settings or groups of professionals. Further to this, are practical considerations on the type and nature of care provided to people with dementia. One of the key developments in dementia care within the past few decades has been the promotion of person-centered care. In more recent times, attention has shifted toward other care models or perspectives, including relational care and rights-based approaches. However, in relation to political, legal, and civil rights and mental capacity, personhood remains central. This presents some dilemmas, such as the role of rights and importantly responsibilities, in situations where capacity is under question. Moreover, balancing social participation with the protection of vulnerable people is of particular importance; there may be a need to move beyond individual rights-based approaches to recognize the interdependencies of dementia care and support. Defining an effective continuum of care and support might be one answer to the above dilemmas. Neighborhood living, community care, specialized dementia communities, nursing, hospital and institutional care fall on a continuum, which can be used to develop appropriate social inclusion practices and activities, depending on the setting.

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Policy

At the time of conducting the research discussed above, the Australian Government was operating under a National Framework for Action on Dementia, 2015–2019. The framework has yet to be replaced with a new one. Nonetheless, a key criticism at the time was that the 2015–2019 National Framework, unlike similar initiatives in other countries such as Scotland and France, did not include clear outcomes. Instead, it was structured primarily around broad, general statements. While some of these related to social attitudes and social inclusion more broadly, the absence of targets or funding linked to initiatives, provided little guidance. This did not prevent communities themselves from initiating social inclusion activities. Nonetheless, policy frameworks at the national and state levels provide guidance and in the Australian context are particularly important in relation to dementia care, funding, and staffing. As such, the following suggestions are made: • Increased education and training for the aged care, allied health and acute hospital care workforce within existing training frameworks and focused on communication and interaction. • Improved post-diagnostic support pathways to provide appropriate support for people with dementia and their carers to reduce the various impacts once a diagnosis is received. • Greater support for people with dementia and carers in the workforce to provide appropriate employment options and flexible work arrangements where necessary. • More intensive support for carers, including ongoing psychological support and initiatives to support the social and health needs of carers. • Increased funding and support for dementia-friendly community initiatives, including awareness raising activities on the social needs of people with dementia. Finally, dementia should be treated as a disability to provide enhanced protection against discrimination and rights abuse. However, policy should go beyond an individual model of rights to acknowledge the interdependence of personal, family, social, and community impacts to improve the lives of all affected by dementia.

5

Conclusion and Future Directions

To meaningfully include people with dementia in communities, neighborhoods, and families, particular attitudes and practices need to be cultivated. Much-needed is the cultivation of appropriate communication and interaction skills, and more generally efforts to encourage more accepting and understanding social attitudes. The research outlined in this chapter consistently showed the complimentary relationship between continued social engagement and the development of understanding and interaction skills among professional groups and the general public. This provides one of many possibilities for addressing the desire for social inclusion among people with dementia and carers. How this is to be achieved requires researchers, practitioners, policymakers. and those impacted by the condition to work together.

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Homelessness and Social Inclusion

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Contents 1 2 3 4 5 6 7 8

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Scope of Homelessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Meanings of Home(lessness) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Homelessness as Social Exclusion in a Global Economy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Homelessness: Exclusion from a Healthy Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Multiple Exclusion Homelessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Invisibility: The Experiences of Homeless Women . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Leaving Home, Country, Culture, and Identity: Forced Migration and Homelessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 What Works? Social Inclusion and Homelessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter introduces the field of homelessness and social inclusion. It focuses in particular on the significance of homelessness as the result of severe social disadvantage over the course of an individual’s life. To do so, it is necessary to define and scope homelessness as both a subject area and also a lived experience. The underlying premise is that homelessness is not an isolated crisis event that can be investigated in a vacuum but is the result of global, structural, individual, and local inequalities. The study of homelessness and social inclusion is concerned with a broad range of areas including global economics, local housing supply, and experiences of personal trauma and abuse. It results in severe ill-health across the lifespan and is preventable. Nonetheless, homelessness is not a universal experience – as typically depicted by images of middle-aged men in dirty sleeping bags in shop doorways – but is experienced by individuals in diverse ways. For example, women’s homelessness is often invisible, young F. Cuthill (*) School of Health in Social Science, University of Edinburgh, Edinburgh, Scotland, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_39

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people can experience it as “sofa surfing” for a long time before they get to the streets, and refugees are regularly positioned as destitute, and so excluded from mainstream services. Finally, the solutions to homelessness lie in prevention, and specifically key interventions such as the provision of stable and affordable housing and trauma informed systems of support. Service provision should be informed by individuals with lived experience of homelessness to ensure they shape delivery, policy, and research. Keywords

Homelessness · Adverse childhood experiences · Domestic abuse · Housing first · Trauma-informed care

1

Introduction

At first sight, the study of homelessness appears to be a straightforward exploration of experiences of living without a home, usually on the streets or in insecure housing. Nonetheless, homelessness is not just a housing issue – the vast majority of individuals who cannot pay rent or mortgage for a few months do not end up on the streets. They have friends, families, savings, and support systems in place to support them through the difficult times until they can find suitable and appropriate housing again. Conversely, homelessness is not just a welfare issue – giving an individual a house is not going to necessarily solve the deep social exclusion experienced by many who suffer the most severe and enduring disadvantage in society. Individuals need appropriate support and treatment by services who understand multiple trauma and care needs. This chapter offers an insight into homelessness as a much more complex form of social exclusion than it initially seems and suggests the causes, and solutions, to homelessness are both structural and individual, global, and local (Piat et al. 2015). At the most basic, homelessness is a short-hand “label” used frequently to describe people who live on the streets, in tents, or in overcrowded substandard housing in cities around the world. The term typically conjures up notions of middleaged men in dirty sleeping bags living in shop doorways. As a passerby and witness to street sleeping, the sight of someone curled up on the street is disconcerting and provokes an emotional response in us – of pity, revulsion, anger, or hate. It demands a reaction: to give; to stop and speak; to ignore; or to engage with conversation, give money or food (Parsell 2011). In choosing to look the other way, actions bear witness to the experiences of extreme social exclusion that many who live on the streets in our global cities endure. What troubles many practitioners and researchers working in the field of homelessness is the ways that “the homeless” are often framed as a homogenous group of people who have “chosen” a life on the streets, and these stories are frequently associated with harmful substance use and mental ill-health. They are frequently positioned as the “other” – sitting on the margins of society, not quite citizens but

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living in our midst – begging for money or food to those who pass by. People experiencing homelessness are frequently seen as in a state-of-being, rather than as transient in life, passing through on the way to a more secure, safe, and stable life. As the wealthy of global megacities negotiate designer heels around the discarded blankets of the street sleeper, people experiencing homelessness become the “other” as they seek a bed for the night or a hot meal. And yet homelessness is not a lifestyle choice, but one of the deepest forms of social exclusion in society. While the global media frequently portray homelessness as an individual experience, it is the result of a complex collision of global, structural, and personal factors resulting in a life without a safe, warm, secure, and private place to call home. To have a home is much more than just to have a roof-over-ones-head: it is somewhere to hide from the world, to feel safe and secure, somewhere to nurture children and to thrive. Home, of course, is not this idealized notion for everyone, and for many who live with domestic abuse and violence, it is a place of danger. Nonetheless, home is recognized as an ideal and is an important factor for human flourishing. What critics see as damaging is the way that the global media herald personal stories of individuals who have lived through experiences of homelessness, only to have “found a way” through adversity into safe housing, secure employment, and rehabilitation back into mainstream society. Woven through these accounts are notions of individual resilience, hard work, and perseverance in the face of adversity. And while these narratives are undoubtably individually inspiring, they mask a substantial body of evidence that situates the experience of homelessness within the context of structural disadvantage. Fitzpatrick et al. (2013) assert that homelessness is the result of a nexus of individual factors and structural inequalities that are played out across the life-course. The result is deep and lasting social exclusion from the housing market, from meaningful employment, from supportive relationships, and from being included in society. In this chapter, those who are labeled as “homeless” are positioned as people who experience a life without adequate housing as the result of the most extreme form of poverty, disadvantage, and social exclusion. Homelessness is not situated as an isolated event that can be examined in a vacuum but is understood as the culmination of severe social exclusion and poverty in a globalized world. It is a “late marker” of severe and complex disadvantage (Hetherington and Hamlet 2015) and the result of enduring health and social inequities, often since childhood. Of course, an individual crisis can result in the loss of housing but it is usually the end of a long and difficult journey through poverty, childhood adversity, violence, and severe disadvantage.

2

The Scope of Homelessness

There is little doubt that homelessness is a much broader and more complex experience than the street sleeper or the pavement beggar might first suggest. While a simple online search on the topic of “homelessness” will reveal a plethora of photos of threadbare men begging in public spaces, homelessness is found in a multitude of different situations. It is experienced as destitution following the

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refugee journey; as overcrowding in a wealthy megacity; as “sofa surfing” with teenage friends; or as living in multiple-occupancy hostels and boarding houses. Increasingly, research is also showing ways that homelessness can be invisible, especially for women, young people, and those who identify as LGBTQ. While homelessness is undoubtedly experienced individually, it is produced through structural inequalities at international, national, and local levels in a globalized world. The difficulty with defining homelessness is that it is a complex phenomenon and there are currently no international agreements on its precise definition or ways of measuring it. In general, homelessness is a term used to describe individuals who: (a) live in a place of habitation that is below a minimum adequacy standard and/or (b) lack access to adequate housing. Nonetheless, this is a very general definition, and for the purpose of this chapter, the popular modified ETHOS (European Typology of Homelessness and Housing Exclusion) will be used as it captures the complexity of homelessness beyond merely street sleeping. This is based on the ETHOS typology developed by FEANTSA (European Federation of National Organisations Working with the Homeless) and the European Observatory on Homelessness (ETHOS) (FEANTSA 2005). This typology includes both homelessness and housing exclusion, which is increasingly used by policy-makers, researchers and the media. It is a useful transnational framework and the ETHOS (2005) typology, has been updated in the English language version (FEANTSA 2017) to include “all forms of living situations that amount to homelessness in Europe.” This includes: • Rooflessness (without a shelter of any kind, sleeping rough) • Houselessness (with a place to sleep but temporary in institutions or shelter) • Living in insecure housing (threatened with severe exclusion due to insecure tenancies, eviction, domestic violence) • Living in inadequate housing (in caravans on illegal campsites, in unfit housing, in extreme overcrowding) Importantly, the ETHOS typology positions homelessness and housing exclusion together and are understood as comprising three different domains: (1) physical; (2) social; and (3) legal exclusion. By adopting this relatively broad definition, a wide spectrum of homelessness experiences can be captured. As explained in the FEANTSA document, “Having a home can be understood as: having an adequate dwelling (or space) over which a person and his/her family can exercise exclusive possession (physical domain); being able to maintain privacy and enjoy relations (social domain) and having a legal title to occupation (legal domain)” (FEANTSA 2005).

3

Meanings of Home(lessness)

Before diving into the details of homelessness and social inclusion, it is helpful to ascertain meanings of home beyond “rooflessness.” While policy-makers focus on the availability of housing stock and security of tenure as a way out of homelessness,

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meanings of “home” are much more nuanced for everyone in the population than merely to have a shelter. One of the first scholars to challenge the notion of a home as much more than merely a roof was Somerville (1992). He asserted that to have a home is to have a sense of “shelter, hearth, privacy, roots, abode and (possibly) paradise” (p. 332). A home is a place where identity is formed, where family relationships are played out and a private place away from the scrutiny of the outside world. Home brings a sense of belonging, of safety, and of security away from the pressures of the outside world. And yet, for many people experiencing homelessness, these idealized notions of home are a long way from the reality of their lives. Boarding houses and hostels are often places of high surveillance, where communal living spaces are monitored by cameras or staff members, and living on the streets is a very public display of poverty and deep exclusion from mainstream society. As Parsell (2011, p. 442) states, “homeless identity is influenced by day-to-day lives that are on public display.” Nonetheless, it would be misleading to assert that a life of homelessness – living between the streets, boarding houses, tents, temporary shelters, and hostels – is a sterile social experience. Research using narrative and ethnographic methodologies has illuminated positive stories of life on the streets where there is a strong sense of community, belonging, and identity. In San Francisco, Gowan’s (2010) ethnographic research illuminated the multiple ways that people forged identity and community in a large population of tent and street sleeping homeless in the city. She brought a sense of a whole social world of trading goods, developing friendships, and of forging identities on the streets. Likewise, Ravenhill (2014), in her ethnographic doctoral study, found that homelessness culture can operate as a strong counterculture and brings a strong sense of inclusion, belonging, and identity. As a consequence, it can be very difficult for people to leave homelessness and walk away from this sense of street identity and belonging. The bureaucracies of housing policy and availability of housing stock often means that to accept a tenancy or accommodation involves moving to a different area of the city, away from friends and the street community that you have known. The consequence of having a “roof” results in loneliness, social isolation, and mental ill-health. Street relationships can develop a camaraderie that is difficult to leave behind and can contribute to entrenched and long-term homelessness.

4

Homelessness as Social Exclusion in a Global Economy

Frequently accounts of homelessness start, and end, with the individual on the street and their life story. It is hardly surprising, given the emotional response that street sleeping provokes and is a useful strategy employed by many charitable organizations to raise money for their cause. However, a balanced account of homelessness would, clearly, have to take into account both the causes and solutions to homelessness at a global, structural, local, and individual level. The following discussion positions homelessness within the context of global structures and explores the ways

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that economic inequality has contributed to the increase in homelessness in the Global North since the financial crash of 2008. There is little doubt that over the last three decades global capitalism has lifted billions of people out of poverty in countries such as China, India, and Brazil. Nonetheless, these economic gains have not been distributed equally throughout societies. As the rich have disproportionately benefited, the poor have been left behind and inequalities have widened. Since the global recession of 2008, the gap between the super-rich and the rest of the world has increased and as global wealth is protected and concentrated into the hands of the few, austerity has exacerbated economic inequalities. According to the Credit Suisse Global Wealth Report (2020), the world’s richest 1%, those with more than $1 million, now own 43% of the world’s wealth. Credit Suisse defines “wealth” as the value of a household’s financial assets plus real assets (principally housing), minus their debts. Although the outcome of the Covid19 pandemic is still not fully known, the authors surmise that the result will be towards a greater widening of income inequality globally. What troubles many critics of global capitalism is that inequalities between and within countries has grown over the last 10 years as global capital collects in the hands of the few (Dorling 2019). For example, the USA, despite having the largest economy globally and the highest concentration of billionaires anywhere in the world, it also has a 17.9% poverty rate (OECD 2021). Wilkinson and Pickett (2010, 2018) have been two of the strongest challengers to the runaway success thesis of global capitalism. Using robust epidemiological evidence, they have drawn attention to the ways that inequality is making societies disconnected and sick. Their research using large data sets in the Global North has found that inequality increases levels of crime, poor mental ill-health, and low self-esteem. The less equal the society, they assert, the worse the educational outcomes of children, the poorer the health and the lower the life expectancy. Likewise, Dorling (2019) has established an extensive body of research over the last two decades to show the impact of growing inequality on societies, not only in terms of economics, but of a culture that divides people into the “haves” and the “have nots,” making social mobility very difficult to achieve (Dorling 2019). This creates the economic conditions where lower income people are “prevented from realising their human capital potential, which is bad for the economy as a whole” (OECD 2021, no page numbers). Strictly speaking, homelessness is to simply live without adequate housing. Undoubtedly, one of the shadow sides of global capitalism has been the creation of a housing crisis in megacities around the world. Cities in the Global North have been fueled by the need to attract capital investment at the expense of housing the population. As housing has moved from being structures to accommodate the local population to a global capital asset, homes have been bought up by the global elite, pushing the local citizen to the margins of the city or out of the housing market completely. The 2008 global economic crash was triggered by an inflated housing market and has resulted in housing fragility and increasing homelessness. Social housing stock has been sold off to the private market under neoliberal ideologies and the poor pushed to the edges of the city or to overcrowding and substandard accommodation in the inner areas (Dorling 2015).

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The housing crisis manifests differently in a range of countries. For example, the UK needs to build 300,000 more houses per year for the next 20 years to solve the housing shortage. In Australia, house prices and rental markets have been pushed to stratospheric levels, with Sydney and Melbourne now two of the least affordable cities in the world. In a recent analysis of the last 30 years of housing policy in Australia, Pawson et al. (2020) assert that this affordability crisis is fundamentally structural in cause and the result of neoliberal policies and the financialization of housing stock. Australia is not unique by any means, as cities like Shanghai, London, Vancouver, and New York also see the transformation of their once thriving local communities turned into absentee landlords of second homes for the global elite (Dorling 2015). Recent newspaper articles in the UK assert that large sections of central London now “lie dark” as they have been bought by overseas investors and left empty (Jenkins 2020). This destroys the local housing market and displaces communities. Critics of global capitalism assert that the result of these shifts in the housing market and reduced welfare support have resulted in an increase in homelessness across the Global North over the last decade. Caution needs to be used when the available statistical data on homelessness is analysed. Definitions can be different across countries – some referring to street homelessness and other to statutory registered homeless. Nonetheless, the overall trend a dramatic rise in homelessness in the Global North. In the USA, the annual count of “rough sleepers” in 2018–2019 was found to be an estimated 568,000 people, a 3% increase on the year before. Overall, the unsheltered homeless population in the USA rose in 2018/2019 by 9%. This federal picture masks the huge variability between different states, where the number of unsheltered homeless decreased in states such as Florida, Connecticut, and Maine but increased by a huge 21% in California, an increase of more than 18,000 people on the year before (US Department of Housing and Urban development 2020). California is the richest state in the USA and yet has the highest number of unsheltered individuals. Interestingly, this data set indicates that 52% of people experiencing homelessness in the USA are members of families with children, which contrasts with 13% of the US general population. These official statistics also reveal racial inequalities, with African Americans accounting for 40% of all people experiencing homelessness in 2019. A similar racial profile is revealed in the Australian census data: 45% of people experiencing homelessness are immigrants, while only 28.2% of Australians are immigrants (Australian Bureau of Statistics 2018). In addition, the data shows that Aboriginal or Torres Strait Islanders make up 20% of the homeless population but are only 2.8% of all Australians. As with the USA, an overall increase in homelessness is also seen in Australia and Europe. In Australia, despite steady economic growth between 2011 and 2016, the national census in those years identified a 14% increase in homelessness (Australian Bureau of Statistics 2018). In Europe, with the exception of Norway and Finland, there has been a dramatic increase in the number of people experiencing homelessness over the last 10 years. It should be noted that comparative data is difficult across Europe as each country collects different data in a range of ways, such as annual statistics, one night winter counts, and so on. Nonetheless, it is estimated that 700,000 homeless

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people are currently sleeping on the streets, or living in emergency or temporary accommodation, across the European Union. The highest increase in rough sleepers has been in England, although Germany saw a 150% increase between 2014 and 2017. This is largely attributed to the increase of almost a million Syrian refugees to Germany in 2015–2016 (FEANTSA and the Abbe Pierre 2020).

5

Homelessness: Exclusion from a Healthy Life

As this chapter explains, homelessness is caused by both personal life experiences and global structural inequalities which coalesce to make both individuals and societies sick. The combination of these personal and economic inequalities results in poor health outcomes, reducing life expectancy, educational and work prospects (Marmot 2010, 2017). When Wilkinson and Pickett (2010) wrote The Spirit Level, they presented robust epidemiological international data to argue the “pernicious effects that inequality has on societies: eroding trust, increasing anxiety and illness, (and) encouraging excessive consumption” (p. 10). In their sequel, almost 10 years later (Wilkinson and Pickett 2018), they asserted that more equal societies have better mental health outcomes, less stress, and an overall improved health and wellbeing. Key to this debate is that homelessness is recognized as not only a housing issue but also a health care issue (Hewett and Halligan 2010). People who experience homelessness, particularly street sleeping, have the worst health outcomes of any group in society (Fazel et al. 2014). The most recent systematic review into homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries found that standardized mortality rates for excluded populations, including people experiencing homelessness, are 7.9 times higher for men and 11.9 times higher for women (Aldridge et al. 2017). The same research found that nearly one in three deaths of people experiencing homelessness are due to causes amenable to effective health care interventions (Aldridge et al. 2017). People experiencing homelessness and severe social exclusion are at increased risk infectious disease (Luchenski et al. 2018; Fazel et al. 2014) and multimorbidity (Bowen et al. 2019). While for many years, the health care literature focused on homelessness, harmful drug use, and mental ill-health, the prevalence of noncommunicable diseases in homeless populations is increasing recognized as a health care need. As this population ages along with the rest of the population, people experiencing homelessness also suffer high levels of cardiac disease, diabetes, strokes, and cancer. A further reason for this poor health is that individuals experiencing homelessness are often excluded from health services, including mainstream substance misuse and mental health services. Many find it hard to access services as they feel stigmatized and excluded from mainstream provision. Stigma and negative staff attitudes are found to exist across a range of different health and social care providers (Weisz and Quinn 2018). Barriers to access exist at multiple levels: discharge from prison is often fragmented and services lack continuity, so people end up back on the streets; inflexible health care systems result in difficulties in accessing community

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health care services; and registering for available health care services can be difficult for people who do not have a fixed address (Bowen et al. 2019). In addition, there is also a lack of specialist community health care centers for homeless people that can cater for their specific needs. While these do exist – and there are excellent examples in the UK, the USA, and Australia – they are often poorly funded and only available in particular city areas.

6

Multiple Exclusion Homelessness

A central theme running through this chapter has been the increasing complexity of homelessness in a globalizing world, whether this has to do with definitions of homelessness, meanings of home, or the global economy. This, though, should not be taken to mean that the needs of those who experience the most severe forms of homelessness and street sleeping are ignored. Overall, there is an understanding that the focus of homelessness and social inclusion should be predominantly on those who experience the most severe forms of social exclusion. The task is to ensure that they are brought into society. Multiple exclusion homelessness (MEH) is a term that is used to describe the deep social exclusion that is experienced by people who have the most complex needs and typically includes those who experience street sleeping, squatting, or living in insecure accommodation. It is also a group often associated with harmful substance use, mental ill-health, and frequent users of emergency health and social care services. In the UK, a qualitative study across seven cities found consistent experiences of childhood trauma, substance misuse, institutional care, begging, and street drinking for those identified as multiple excluded homelessness (Fitzpatrick et al. 2013). In Canada, the fragility of the transition for young people moving from looked-after care to settled housing was highlighted as an additional factor leading to street homelessness for young people (Piat et al. 2015). One of the important shifts in understandings of homelessness has been to acknowledge the role of childhood trauma and violence in extreme social exclusion in later life. Much of this work has been developed around the notion of Adverse Childhood Experiences (ACEs), which are a set of ten different experiences in the early childhood years. These include physical abuse; physical neglect; emotional abuse; emotional neglect; sexual abuse; domestic violence; household harmful substance use; household mental ill-health; criminality; parental separation; and living in care. The notion of ACEs was first developed by researchers in the USA and understood as: “intrafamilial events or conditions causing chronic stress responses in the child’s immediate environment” (Kelly-Irving et al. 2013, p. 721). Over the last decade, interest in ACEs has increased as policy-makers are influenced by the evidence that links the number of ACEs a child experiences in the early years with more complex levels of need in later life. This includes an increased likelihood of being in prison and being involved in violence. Higher levels of binge drinking, smoking, harmful drug use, suicide, and unplanned teenage pregnancy have all been associated with higher numbers of ACEs (Centre for Homeless Impact 2018).

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While the development of more nuanced understandings of the role childhood trauma and violence play in later social exclusion is welcomed, ACEs remain controversial. Policy-makers in the UK are increasingly adopting the terminology of ACEs to better understand childhood trauma and some health and social care practitioners are now using a numerical scoring system to calculate the number of ACEs someone has experienced as a screening tool for predicting homelessness in later life. This calls in to question the dangers of ACEs merely becoming a “tick list,” while missing the nuances that individual experiences of trauma and abuse can bring. The other area of the ACEs debate that remains controversial is the role of extreme poverty in the ACE calculations. In the original conceptualizations of ACEs, extreme poverty was not included as one of the ten ACEs (Kelly-Irving et al. 2013), but researchers argue that extreme poverty is central to experiences of homelessness, harmful substance use, and offending in later life (Bramley et al. 2020), and should be central to debates on extreme social exclusion and homelessness. One of the emerging theses in research that looks at children and young people is how young people participate in, and counter, homelessness in different ways to older adults. Youth studies have highlighted the ways that experiences of homelessness differ for young people, principally in relation to leaving care settings and escaping family violence, and how pathways into homelessness are shaped by periods of “sofa surfing” with friends, living in fragile and overcrowded accommodation. A significant aspect of youth homelessness in recent years is the disclosure of lesbian, gay, bisexual, transsexual, and queer (LGBTQ) identity as an important factor in young people becoming homeless. LGBTQ youth make up a disproportionately high number of young people who become homeless. Estimates in the USA are around 20–40% (Durso and Gates 2012) and around 24% in the UK (Albert Kennedy Trust 2015). Although the associations between LGBTQ youth and homelessness are not yet clearly understood, high levels of trauma, sexual abuse, and difficulty in care have been identified as important factors across a range of different countries. Clearly, stigma and discrimination have an important role to play in shaping identity for LGBTQ youth and they engage in higher levels of harmful drug and alcohol use than their heterosexual peers.

7

Invisibility: The Experiences of Homeless Women

Following on from the points raised above concerning children and young people, another emerging area of study is the experience of homelessness for women. For many years, empirical research into homelessness has focused on street sleeping men. Nonetheless, increasingly homelessness is understood to be experienced in much more nuanced and invisible ways. Researchers, particularly in the fields of public health and social science, have highlighted recently the intersections of homelessness with a focus on gender (Maycock et al. 2016). This is creating an interesting and diverse body of work that seeks to uncover the ways that women’s homelessness is experienced differently to that of men. What is striking is that

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women’s homelessness, both in the data and on the streets, is less visible than for women and seems to have been overlooked. These explanations are useful when trying to understand the role of gender in homelessness and what has become clear is that domestic abuse is a key theme in women’s homelessness. At worst, the consequences of homelessness for women, and for their children, are more severe and enduring because they are often not known to health and social services. Opportunities for prevention are missed and charities report that women who are street sleeping engage with homelessness services at a much later date than men, often presenting with the most severe forms of mental ill-health and very complex needs (St Mungo’s 2014). One of the reasons that homelessness research has focused on the experiences of men, rather than women, is that men are much more visible on the streets than women. Street sleeping is a dangerous activity, exposing individuals to violence, abuse, and attack. Research by May et al. (2007) suggests that men are much more likely than women to expose their sleeping places to public view as they “colonise” the streets by taking on a tough masculine exterior and territorial dominance of the city. Women, in contrast, hide from public view and in doing so, their experiences are rendered invisible. Men are also much more likely to appear in statutory homelessness statistics as in many countries, women and children who are at risk of homelessness are placed in high priority need and given some form of housing. As mentioned above, women who experience homelessness are often victims of domestic abuse and as such are not recorded in official homelessness statistics as shelter is provided through other means, such as a women’s refuge. One reason that homelessness for women is problematic is that there are fewer services tailored to the specific needs of women. A review of services by the charity Homeless Link in England in 2019 found that 28% of service users in accommodation projects were women and yet very few services are able to offer women-only provision within their service (Homeless Link 2019). This is important as many women are wary of services that are populated by men, as their history of abuse and violence makes them afraid. As a consequence, women avoid shared services and appear in population data in such small numbers that they are not useful for analysis (McNeish and Scott 2017). Nonetheless, narrative accounts of the lives of women who experience severe and multiple disadvantage, including homelessness, are replete with complex histories of childhood violence, domestic abuse, trauma, and harmful substance use. Concern for women’s homelessness is not only that women are seen as extremely vulnerable (Homeless Link 2019), but women who experience homelessness and sleep on the streets are at much higher risk of early death than men (Aldridge et al. 2017). In a large study in England that sought to redefine severe and multiple disadvantage, researchers found that approximately the same number of women and men (around 336,000 adults) experience at least three of following: homelessness, substance misuse, poor mental health, and being a victim of violence or abuse (Bramley et al. 2015). Nonetheless, this study also found important gendered patters of disadvantage that had not been evidenced in previous similar studies. Women disproportionately identified as having experienced mental ill-health, violence, and

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abuse, and either homelessness or harmful substance use in adulthood (1.1 million people). For many homeless women, mental health is very poor and they use harmful substances to self-medicate and numb their pain. A multi-sector study in the UK found that 70% of homeless women experience mental health needs, compared to 57% of men (St Mungo’s 2014). The consequences of homelessness for women can be disastrous as the impact is not only for the woman herself but also for the family and especially for children. As highlighted already, when homeless women talk about their lives, they tell of high levels of sexual and physical violence, trauma, and abuse, often stemming from childhood. This trauma erodes confidence and limits their ability to form healthy relationships in later life. European research has found that domestic abuse or intimate partner violence is frequently cited by women as the most important contributing factor to their homelessness (Maycock et al. 2016). This can include physical, emotional, sexual, and psychological abuse as the result of physical violence and coercive control. In addition, involvement in paid sex work and offending behavior is common among homeless women. Australian studies with young homeless women have identified the ways that young women use “survival sex” to mask their homelessness. They became involved in intimate relationships with men – sometimes violent men – as a form of “safety” from the streets. Although at danger from intimate partner violence, they perceive these relationships as a safer “option” than the violence they might experience on the streets (Watson 2017). Continuing the theme of repeated trauma, the majority of women who experience homelessness have had their children taken into care. These women are grieving their own childhoods and also grieving their own lost children. They have not experienced positive modeling of parenting themselves (Murray et al. 2018). One London-based charity found that although 50% of their female clients were mothers, over 79% of these women had their child(ren) taken into care (St Mungo’s 2014). Pregnant homeless women’s experiences are often very traumatic, as they undergo repeat care proceedings and high numbers of children are taken into care. Also, homeless pregnant women often become pregnant again very quickly after the grief and loss of losing a child to care (Broadhurst et al. 2017). There is currently no reliable data on the overall prevalence of pregnancy in the homeless population. Studies indicate that it is substantially higher than in the general population due to decreased use of contraception and sexual victimization among women who are homeless (Cronley et al. 2018). These factors highlight, on the one hand, the complexity of homeless women’s lives and of trauma impact; however, they also underscore the strong impact of housing itself on the safety, health, and well-being of women and their (unborn) children. Pregnant homeless women are, for example, less likely to attend antenatal care and are at an increased risk of low birth weights and preterm birth babies. Despite this, pregnancy can be a turning point for homeless women (Keys 2017; Watson 2017), supporting the need for strong and early service responses to this group. The challenges women face may paradoxically impact their ability to birth and parent in a positive way, providing them with resilience, strength, and determination; however, these effects should not be taken as evidence of a lack of support needs.

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As with all people experiencing homelessness, pregnant women have difficulty in accessing housing support due to the overwhelming demand for these services. Research in Australia found that access to crisis, medium- and long-term accommodation is limited, and pregnant women in housing crisis may be referred to rooming houses/bed and breakfast accommodation, private hotels, or stay with family and friends (Murray et al. 2018) – accommodation that is unlikely to be suitable once the baby is born. Critical shortages in safe, stable, and affordable housing constrains the capacity of homelessness services to support homeless pregnant women, who are likely to also have additional support needs. Before leaving this section, it should be emphasized that migrant homeless women are at particular risk when living in intimate relationships in a “safe haven” country. They have little family or community support, have difficulties navigation the health and social care system, and are constrained by cultural expectations around marriage. They are at risk of abuse and sexual exploitation, engaging in harmful drug use and sex work to survive (Cuthill and Grohmann 2020). If migrant homeless women become pregnant, the outcomes for them and their children are very poor.

8

Leaving Home, Country, Culture, and Identity: Forced Migration and Homelessness

It would be remiss to omit migrant homelessness from this chapter as, in a late capitalist economy, forced migrants are by far the largest group of homeless people in the world today. The United Nations High Commission for Refugees (UNHCR 2020) Global Trends Report shows the highest ever number of displaced people at 79.5 million at the end of 2019. This accounts for 1 in every 97 people globally and is the highest ever recorded number of displaced people. To lose your home, your country, and your place in the world – physical, social, and cultural homelessness – is arguably one of the most extreme forms of social exclusion experienced by any individual. There has been a growing realization that when individuals are forced from their homes, their countries, and their known lives by conflict, war, environmental catastrophe, political unrest, and persecution, they become homeless in the widest sense of the word. While the immediate physical displacement results in exclusion from housing – many are immediately relocated in refugee camps or temporary accommodation – social and cultural exclusion has been shown to permeate refugee lives for many years through border crossings, arrival, and settlement. Prejudice and stigma against refugees and people seeking asylum is enacted through a multitude of way and a lack of a home is felt through the loss of a family, culture, community, and a place to feel safe. While the displacement of people is nothing new, the movement of people seeking refugee status has taken on a political ferocity in the last decade (Castles et al. 2013). Governments in the Global North seek new ways to keep refugees from their borders by continuing to build walls – both physical and metaphorical – and the

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refugee experience is one that is permeated with exclusions at multiple levels. Marshall (2018) asserts that global society is now an “age of walls”: from Palestine and Israel to Mexico and the USA, the world is increasingly marked by physical structures that exclude, hide, and separate people into the “them” and “us.” Examples of this segregation include the former president of the USA, Donald Trump’s, much heralded wall with Mexico; the UK government is reportedly considering off-shore detention camps to stop migrants crossing the English Channel in flimsy boats; and Australia has been criticized for the poor detention conditions in Manus Island. Refugees experience homelessness as severe social exclusion from a country, from a home, and from a sense of belonging. The importance of homelessness as experienced by migrants is that it does not stop with displacement from country of origin but has been widely documented throughout the whole of the refugee journey. In many European countries, people seeking asylum end up living as undocumented migrants on the streets of cities as they have been unable to prove their claim for asylum but are unable to return to their home country. In the UK, this extreme form of homelessness is used as a policy tool to amplify the “hostile environment” that the government has created towards refugees and migrants. This feeds existing stigma as migrants and citizens learn to live together in public city spaces. A recent study in Glasgow, Scotland, found that homelessness as a result of the asylum process in the UK leads to high levels of harmful substance use as homeless migrants adopt street culture as a survival strategy (Cuthill and Grohmann 2020). It is well documented that severe and enduring social exclusion due to homelessness leads to very poor health and wellbeing outcomes, but for those who have no citizenship status, the outcomes can be catastrophic.

9

What Works? Social Inclusion and Homelessness

The final section of this chapter takes a much more positive turn, to look at the ways that people experiencing homelessness can be brought in from the cold, both physically and metaphorically. Social inclusion is concerned with the ways that people experiencing homelessness can move from the most extreme margins of society to be included in society – it thus focuses on both the prevention of homelessness and on enabling people to exit homelessness. Much of the focus of social inclusion interventions has been focused on health, with those who are already living at the most extreme margins of society, particularly those who experience are sleeping on the streets, experience harmful drug use and mental ill-health, and engage in offending behaviors (Bramley et al. 2020). Although a small proportion of the population, this group are high users of services – particularly health care – and are understood to be the same group of people using multiple services (Bramley et al. 2015; Fitzpatrick et al. 2013). These interventions have primarily focused on health and social care services and fall under the umbrella term of “inclusion health.” Inclusion health has emerged as an approach that seeks to address health inequalities, particularly for those who are the most marginalized and excluded populations.

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Although an agreed definition of inclusion health does not yet exist, it is understood to include those who experience street homelessness, extreme poverty, have been imprisoned, engage in sex work for money or drugs, and experience harmful drug use (Aldridge et al. 2018). An international review of the systematic review literature found that interventions fell into two different groups: (1) interventions that directly affect health, such as talking therapies, screening, prevention, and drug therapies, and (2) interventions aimed at tackling the wider determinants of health, such as housing, education, employment opportunities, and crime (Luchenski et al. 2017). The focus on prevention has become increasingly important as service providers, researchers, and policy-makers grapple to stem the growing tide of homelessness globally. Rather than looking at ways to intervene in the lives of people who experience severe and multiple disadvantage, prevention approaches seek to intervene to prevent extreme poverty, childhood trauma, and a life on the streets, so that better life-long outcomes can be achieved and a life of extreme social exclusion can be avoided (Luchenski et al. 2017). Much of the work on health inequalities has focused on the importance of intervention in the early years of life (Marmot 2010) to mitigate the impact of childhood trauma. For example, the State of Victoria, Australia, has put considerable resources into the detection and intervention in intimate partner violence in recent years. Another example is in Scotland, where community child health nurses (Health Visitors) have a statutory duty to carry out 11 health and welfare visits to all families with children under 5 years of age. They also have a particular focus on identifying domestic abuse. In the USA, Educational programs such as ACE Interface ® can help health and social care practitioners (ACE Interface 2014) to understand and mitigate the impact of ACEs by developing strong and stable family relationships and community support (ACE Interface 2014). Running in parallel to much of the work on ACEs, recognition of the importance of trauma-informed environments and psychologically informed care has gained traction, especially in the fields of health, social care, and homelessness. This is an approach that recognizes that people experiencing homelessness have severe and enduring mental health issues, and while they are often in need of the most help, they are least likely to access that help. People who have experienced complex trauma find it difficult to sustain meaningful relationships and can find it difficult to react to help in socially acceptable ways, often refusing services that are designed to support them. Individuals have often been left by the people who should have been there for them, particularly during childhood, and so are likely to lack trust in others. They often feel stigmatized and ashamed of the situation they find themselves in. Alcohol and harmful drugs are frequently used as a way of coping with the rejection and pain. They can find it difficult to control the overwhelming fear or anger that they feel and experience high levels of anxiety and depression. Given the complexities, it is hardly surprising that traditional crisis services have been unable to cope with the levels of trauma that some individuals experiencing homelessness have been through. As a result, they have had a low tolerance for “bad behavior” or “chaotic lives” within the system. Individuals have been too readily excluded from the help they need the most. This new move towards Psychologically Informed Environments (PIE) and Trauma-Informed Care (TIC) recognizes the

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trauma that many people who have experienced multiple and complex trauma over their life-course are unable to engage in mainstream services. Health, housing, and social care practitioners are trained in TIC to ensure that they are able to more fully understand the needs of people who have experienced trauma and to respond in the most appropriate way. Developing reflective practice has been a very positive outcome of this work and a way for practitioners to sustain this emotionally engaging work and to refine their skills going forward. The drive towards PIE has really gained traction in the UK over the last 5 years, and success relies on the redesign of services, not only on educational approaches for individual staff. The five key principles of PIE are: 1. Developing a psychological framework allowing services to have a shared understanding of, and response to, the people they support. 2. The physical environment and social spaces are adapted to improve the space available to engage and support people in the service. 3. Staff training and support which enables workers to move away from crisis management and work in a more therapeutic and planned way. 4. Managing relationships in order to help staff and clients self-manage their emotional and behavioral responses to triggering events. 5. Evaluation of outcomes to enable staff and clients to evaluate their effectiveness, for ongoing development, and to evidence service impact (Homeless Link 2017). This move towards PIE and TIC is a positive approach at service delivery level, and yet homelessness prevention measures are also needed at a structural level, to ensure that everyone who needs a house is able to access appropriate accommodation and has the support be able to thrive in that environment. Treatment of mental ill-health and harmful substance use is not enough. Unless individuals are in stable housing, treatment will have a limited impact on improving health (Tsemberis et al. 2004). Housing First is a “revolutionary” approach to housing and treatment (BuschGeertsema 2013) that has been rapidly implemented in many European countries, the USA and Canada over the last two decades. A systematic review of Housing First in Canada, the USA, and Europe found that this approach to stable housing improved housing tenure, reduced contact with the criminal justice system, reduced admissions to emergency care, and improved health and well-being (WoodhallMelnik and Dunn 2016). Housing First works with people who are entrenched in street culture and usually have high care needs, such as severe mental ill-health and harmful drug use. Housing First stands in contrast to a traditional “treatment first” approach, where people receive treatment for their mental health issues and/or harmful substance use and then when they are “stable,” they are given temporary accommodation to see if they can maintain tenancies in that accommodation. It is widely recognized that this approach has very limited success as it is very difficult to treat any form of mental ill-health or addiction if someone has no place of safety and shelter to live. Housing insecurity in itself is a source of stress and impacts mental

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health inadvertently. In addition, the effort required to find a safe dry space for the night and food becomes the focus of each day, rather than treatment options. The Housing First approach establishes people in stable housing first, before attempting to engage them in drug treatment services or mental health support services. When individuals are housed in safe accommodation, individuals are able to work with services to explore treatment options. An important element of the Housing First approach is the allocation of support workers to individuals, so that people can be helped to maintain their housing tenancy and seek treatment in the most appropriate way for them. In this way, stable housing plus support enables people to engage in treatment for harmful drug use, reduces their use of health care services, increases housing tenure, and improves health outcomes (Baxter et al. 2019). Advocates of housing first argue that fidelity of the approach needs to be ensured and must be adhere to the following five principles: (1) People have a right to a home; (2) Flexible support is provided for as long as is possible; (3) Housing and support are separated; (4) Individuals have choice and control; (5) An active engagement approach is used; (6) The services is based on people’s strengths, goals and aspirations; and (7) A harm reduction approach is used. The country that has become the gold standard example of how to reduce homelessness in high-income countries is Finland. Finland has successfully reduced homelessness, almost to the point of extinction, by the combination of Housing First and the strategic integration of services across municipalities and services (Pleace 2017). There has been a long-term strategic investment in affordable housing, increasing the supply of affordable social living. In addition, a commitment to medium to long-term planning – much longer than the usual 4 years of a government term – has resulted in sustained funding. This infrastructural investment has also been accompanied by workforce development and learning networks within, and between, countries. While it is recognized that this has taken over a decade to achieve, and has not been easy, the result is an almost eradication of homelessness in Finland and you are highly unlikely to see anyone sleeping on the streets of Helsinki, the capital city. These successes are not only encouraging for Finland but holds an optimistic torch to others around the world working in the field of homelessness to know that homeless can be eradicated, given the economic resources and political will. Finally, this chapter concludes by highlighting the increasing role that people with lived experience of homelessness are having in informing policy, organizations, health services, and research. For too long, homelessness has been discussed by those who live – and have always lived – in stable and secure accommodation. While well-meaning, the voices of people with lived experience of homelessness have not been heard and have rarely influenced the housing debate. Encouragingly, this is rapidly changing as individuals with lived experience participate in research, the media, and services to shape the policy debate. It is now commonplace for peer mentors to work in health, housing, and homelessness services – particularly in drug and alcohol services – to share their insights and learning from their own lives on the streets.

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Conclusion and Future Directions

This chapter has sought to establish the nature of homelessness and to highlight the ways that it is increasing in high-income countries. This is the consequence of a global capitalist system that rewards the economic elite and disadvantage the poor. These widening inequalities are a cause for concern and are making societies ill. Homelessness is the result of severe social exclusion and deprivation but it is not merely the experience of local men sleeping on the streets of the megacities of the Global North. It is experienced by a multitude of diverse people in both visible and invisible ways. Women, refugees, young people, and those who identify as LGBTQ experience homelessness in different ways and pathways out of homelessness need to be tailored to meet the needs of different groups. While the consequences of homelessness can be catastrophic in terms of health and well-being – often resulting in early death, poor mental health, and harmful substance use – there have been some exciting developments in the field in recent years that give hope for a future without homelessness. The evidence to support the success of Housing First as an approach to prevent homelessness is very strong, and this has been proven to work in Finland, where homelessness has now largely been eradicated. The lessons to learn from Finland is that housing must be appropriate and provided with individual tailored support. The move towards PIE and TIC are both important developments here. In addition, social policies need to be set in place where there is a long-term economic investment in new housing stock, social housing, and individually tailored support packages for individuals who have experienced high levels of trauma. Finally, the inclusion of people with lived experience of homelessness – experts by experience – are key to service provision, research, and the policy agendas on interventions in, and prevention of, homelessness (Luchenski et al. 2017). In these multipronged ways, homelessness can be prevented and individuals experiencing homelessness can be fully included in society to their own benefit and to the benefit of society as a whole.

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Tsemberis, S., Gulcur, L., & Nakae, M. (2004). Housing first, consumer choice, and harm reduction for homeless individuals with a dual diagnosis. American Journal of Public Health, 94(4), 651 656. United Nations High Commission for Refugees (UNHCR). (2020). Global trends report: Forced displacement in 2019. https://www.unhcr.org/globaltrends2019/. Accessed 12 Jan 2021. US Department of Housing and Urban Development. (2020). ‘Part 1: Point in time estimates of homelessness’, the 2019 annual homeless assessment report (AHAR) to Congress. https://www. huduser.gov/portal/sites/default/files/pdf/2019 AHAR Part 1.pdf. Accessed 20 Jan 2021. Watson, J. (2017). Youth homelessness and survival sex: Intimate relationships and gendered subjectivities. Abingdon: Routledge. Weisz, C. & Quinn, D. M. (2018). Stigmatized identities, psychological distress, and physical health: Intersections of homelessness and race. Stigma and Health, 3(3), p.229. https://psycnet. apa.org/doiLanding?doi=10.1037%2Fsah0000093 Wilkinson, R., & Pickett, K. (2010). The spirit level: Why greater equality makes societies stronger. London: Bloomsbury Press. Wilkinson, R., & Pickett, K. (2018). The inner level: How more equal societies reduce stress, restore sanity and improve everyone’s well being. Milton Keynes: Allen Lane. Woodhall Melnik, J., & Dunn, J. (2016). A systematic review of outcomes associated with participation in housing first programs. Housing Studies, 31(3), 1 18. https://doi.org/10.1080/ 02673037.2015.1080816.

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Identifying Social Exclusion and Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 The Significance of Addressing Social Exclusion Among Immigrant Older Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Definitions and Meanings of Social Exclusion and Social Inclusion . . . . . . . . . . . . . . . . 2.3 A Conceptual Framework for Social Inclusion and Exclusion of Older Immigrants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Exclusion Challenges of Immigrant Older Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Material and Financial Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Services, Amenities, and Mobility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Social Relations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Civic Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Neighborhood and Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Sociocultural Aspects of Society . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Barriers to Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Policy Implications and Practice Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Social inclusion is crucial to older adults as it facilitates them to stay actively; gives them a sense of belonging, purpose, and accomplishment; and enhances H. Tong (*) Faculty of Health and Community Studies, MacEwan University, Edmonton, AB, Canada e mail: [email protected] C. A. Walsh · N. Bouchard University of Calgary, Calgary, AB, Canada e mail: [email protected]; [email protected] D. W. L. Lai Hong Kong Baptist University, Kowloon Tong, Hong Kong e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_40

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their quality of life. Social inclusion also offers opportunities for older adults to continue contributing to the development of society based on their needs, preferences, and abilities. Given the population of immigrants has grown globally, and immigrant older adults are often neglected in policy making, this chapter will discuss the concepts of social inclusion and social exclusion in the context of immigration and specifically for immigrant older adults based on current literature and previous studies. Policy implications and practice recommendations will be outlined. Keywords

Social exclusion · Social inclusion · Immigrants · Older Adults · Migrants · Immigrant Older Adults · Social Participation · Civic Engagement

1

Introduction

International migration is a global phenomenon in contemporary society and involves people of all ages. There is no doubt that migration creates new opportunities for many immigrants, but it can also give rise to a number of social and psychological transformations. Of these, migratory stress is common among immigrants and particularly for those immigrants who migrated at an older age. Older migrants are defined as “any foreign-born person who either moved to the country of destination via, for example, a family reunification program, at age 65 or older, moved in the past and then reached the retirement age in the country of destination, or was displaced by conflict or climate change at 65 age older or reached retirement age while displaced” (United Nations, Migration Data Portal n.d.). Globally, there were approximately 32 million international migrants aged 65 years or over in 2019, accounting for 11.8% of all international migrants (United Nations, Department of Economic and Social Affairs, Population Division 2019). Adaptation, acculturation, and inclusion to the host country for older immigrant adults were often accompanied by significant challenges socially, economically, and environmentally, including social isolation and loneliness resulting from disrupted social relationships and social networks (Johnson et al. 2017; Gierveld et al. 2015; Rhee et al. 2015), exclusion from labor market (Rhee et al. 2015), and reduced capacity to access social and health care services (Lai and Chau 2007). These challenges increased the risks of being socially excluded among older immigrants, which in turn further impacted their well-being. It is well documented that due to their limited language proficiency and cultural adaptation as well as unfamiliarity with their new environment, older immigrants are more vulnerable to mental health concerns and are less likely to use mental health services compared with their age-matched counterparts in their country of origin or native-born older adults (Gierveld et al. 2015; Guo and Stensland 2018; Ladin and Reinhold 2013; Northcott and Northcott 2010). However, specific experiences of social exclusion among immigrant older adults, and associated influences and indicators and actions to alleviate this state or promote

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the processes of inclusion have not received significant research attention. This chapter will identify barriers to social inclusion of older immigrants based on current literature and previous studies. Policy implications and practice recommendations will also be outlined.

2

Identifying Social Exclusion and Inclusion

2.1

The Significance of Addressing Social Exclusion Among Immigrant Older Adults

A specific focus on social exclusion of immigrant older adults is particularly relevant, timely, and necessary due to a number of factors: the growth of the population of older adults; the significance of current global immigration trends; the criticality of social inclusion with respect to immigration experiences in general, inconsistency in existing indicators or measures of immigrants’ social exclusion and social inclusion; and a lack of current research on the specific experiences and indicators of social exclusion of immigrant older adults. A more comprehensive understanding of the social exclusion of immigrant older adults can inform the development of responsive policies and services, which is of particular significance considering the barriers to service faced by immigrant older adults. This is noteworthy, as immigrants’ successful social inclusion in their host communities is not only linked to benefits for immigrants themselves, but also for members of their host countries. Although social inclusion is poorly understood in relation to older immigrants, international aging policies have begun to focus on promoting more socially inclusive societies (Scharf and Keating 2012). For example, creating an inclusive society for all and addressing issues of social inclusion and integration for older adults and for immigrant and visible minority populations have also been identified as priorities by the countries like Canada, Australia, and New Zealand.

2.2

Definitions and Meanings of Social Exclusion and Social Inclusion

The concept of social exclusion emerged in response to the one-dimensional model of poverty as a measurement of disadvantage, reflecting the need to consider political, social, and cultural factors when examining and addressing the experiences of vulnerable groups, as well as the importance of considering exclusion in terms of participation and access to resources (Walker and Walker 1997). Originated in 1970s in France, the term social exclusion was used to discuss the adversity faced by “les exclus,” a group of citizens who were not provided for by the state social security net (Atkinson 2000). From France, the concept of social exclusion rapidly spread across the rest of Europe and became a guiding idea in a wide range of research and policy making on deprivation and inequalities and more or less displaced poverty in the policy discourse in Europe.

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While more than a decade on from the initiation of these definitions and debates, social exclusion remains a prominent concept in research on vulnerable social groups across the world as it offers a way of re-conceptualizing and understanding social disadvantage (Levitas et al. 2007). For example, the 2020 European Commission strategy acknowledges the damage to both economic and social progress brought about by the financial crisis, and proposes seven flagship initiatives to restore Europe’s economy, including the European platform against poverty to ensue economic, social, and territorial cohesion by helping the poor and socially excluded and enabling them to play an active part in society (European Commission 2010). Given its origins, rapid spread, and multiple interpretations, multiple definitions of social exclusion exist. Generally, social exclusion describes the state of disadvantage faced by particular groups who are deemed to be excluded from mainstream society and who cannot fully participate in normal life. For example, a commonly used working definition devised by Levitas et al. (2007, p. 9) characterizes social exclusion as “a complex and multidimensional process. It involves the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities, available to the majority of people in society, whether in economic, social, cultural or political arenas. It affects both the quality of life of individuals and the equity and cohesion of society as a whole.” Concerns over social exclusion have prompted the use of the term of social inclusion internationally. Similar to social exclusion, a universal definition of social inclusion is not available. The Commission of the European Communities (2003, p. 9) defines social inclusion as “a process which ensures that those at risk of poverty and social exclusion gain the opportunities and resources necessary to participate fully in economic, social, political and cultural life and to enjoy a standard of living that is considered normal in the society in which they live. It ensures that they have greater participation in decision making which affects their lives and access to their fundamental rights.” The United Nations (2016, p. 20) defines it as “the process of improving the terms of participation in society for people who are disadvantaged on the basis of age, sex, disability, race, ethnicity, origin, religion, or economic or other status, through enhanced opportunities, access to resources, voice and respect for rights.” Social inclusion reflects the opportunity for people and groups to interact and meaningfully engage with other people and groups, without prejudice or discrimination. Therefore, social inclusion could be seen as both a process and a goal. Promoting social inclusion requires tackling social exclusion by removing barriers to people’s participation in society, as well as by taking active inclusionary steps to facilitate such participation. As a policy response to the exclusion challenges, social inclusion is thus a more deliberate process of encompassing and welcoming all persons and embracing greater equality and tolerance (United Nations 2016). In countries like Ireland, Canada, and Australia, the term social inclusion has been widely adopted and appears frequently in policy documents. Despite this emphasis, immigrant older adults are particularly at risk of social exclusion and thus require additional attention and action. Yet, experiences of social exclusion and social inclusion among immigrant older adults are understudied, with limited literature available on this specific issue. A review of empirical research focused on socially inclusive communities for older immigrants found the

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definitions of social inclusion varied and the general characteristics of social inclusion for immigrant older adults were organized around the two main concepts of social support and social participation (Neville et al. 2018). Some studies defined social exclusion as the presence of social support from neighbors and the general community (Stanaway et al. 2011) and social inclusion was measured as being involved in within the community in other studies (Heikkinen 2011; Li et al. 2014). Li et al. (2014), for example, ascribed the sense of community Chinese immigrants had in New Zealand partially by the quantity of cultural activities in which they were involved. Similarly, Heikkinen (2011) defined social exclusion of older immigrants as the inability to participate in the social relationships and activities that occurred within the community. Social integration, while not the same as social inclusion, is often used interchangeably. The research on social integration of older immigrants does shed light on the meanings and characteristics of social inclusion. A review of literature on integration outcomes of immigrant older adults in Canada by Northcott and Northcott (2010) identified four primary categories of integration outcomes: economic outcomes, official language competency, physical and mental health, and social supports, participation, and relationships. Social inclusion could contribute health and well-being in older adults by enabling the pursuit of lifelong interests, the ability to maintain important relationships with others and the ability to participate in meaningful community activities. For older immigrant groups, the benefits of social inclusion included increased sense of belonging, life satisfaction, the development of social networks and support, health service access, physical and mental well-being, employment and economic opportunities, and personal development (e.g., language and social skills (Kim et al. 2013).

2.3

A Conceptual Framework for Social Inclusion and Exclusion of Older Immigrants

Measuring social exclusion and inclusion is necessary to evaluate the worth and efficacy of attempts to improve the issue. However, while they have been reported at highest risk of being socially excluded, the multidimensional nature and the lack of standard data sources across countries make it challenging to measure social exclusion and inclusion for immigrant older adults. Despite these challenges, existing conceptualizations can provide insights for key aspects of social exclusion and inclusion for older immigrants. With respect to the social exclusion of older adults, previous studies found that the characteristics, causes, and consequences of social exclusion in later life may differ significantly from that experienced by younger or middle-aged people (Scharf and Keating 2012). Unique drivers of social exclusion in older adults include the significance of neighborhood and community (Scharf et al. 2005), and cumulative social advantages and risk factors over the life course (Scharf and Keating 2012). Moreover, rather than experience a single form of social exclusion, older adults are more likely to experience multiple exclusions (Levitas et al. 2007; Scharf et al. 2005; Walsh et al. 2017).

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Although interest in social exclusion in older adults has grown, there is a general lack of conceptual work on exclusion of older people. To synthesize knowledge on social exclusion in later life, Walsh et al. (2017) conducted a two-stage scoping review and presented a framework for old-age exclusion. Based on this framework, old-age exclusion involves interchanges between multilevel risk factors, processes, and outcomes, which vary in form and degree across the older adult life course, and its complexity, impact, and prevalence are amplified by old-age vulnerabilities, accumulated disadvantage for some groups, and constrained opportunities to ameliorate exclusion. Old-age exclusion, they suggest, leads to inequities in choice and control, resources and relationships, and power and rights. However, as Walsh et al. (2017) indicated, few studies have examined social exclusion among immigrant old adults, specifically. Key domains of social exclusion in old age are defined in Fig. 1, including exclusion related to: (1) material and financial resources (key terms in this domain:

Fig. 1 Old age exclusion framework depicting interconnected domains and subdimensions. (Adapted from Walsh et al. 2017)

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poverty, deprivation and material resources, income, employment, and pensions); (2) social relations (key terms in this domain: social networks and support, loneliness and isolation, social relationship quality, and social opportunities); (3) civic participation (key terms in this domain: citizenship, general civic activities, volunteering and community responsibility, voting and political activities); (4) services, amenities and mobility (key terms in this domain: health and social care services, transport and mobility area-based exclusion, general services, information and information and communications technology, and housing); (5) neighborhood and community (key terms in this domain: social and relational aspects, services, amenities and built environment, place social-economic aspects, socio-political structures, place-based policy); (6) sociocultural aspects of society (key terms in this domain: identity exclusion, symbolic and discourse exclusion, agism and age discrimination). This framework has been advocated for future studies on old-age exclusion. Although there are unique drivers of social exclusion among older immigrants, this framework serves as a comprehensive and multifaceted view of social exclusion challenges experienced by older immigrants and barriers to social inclusion of this population. The following section summarizes the literature on social exclusion challenges for older adults for each of these domains.

3

Social Exclusion Challenges of Immigrant Older Adults

Older immigrants have been reported to face significant challenges in each of these domains, influenced by multiple intersecting factors as outlined in the following sections.

3.1

Material and Financial Resources

Financial and material resources pertain to the personal economic security of older immigrants and their access to regular monetary income and material goods. When older immigrants have access to financial resources, they are better able to acclimatize to the culture they have migrated to than those who experience financial hardship. Access to financial resources and continued involvement in paid work are also important contributors to a sense of belonging and of aging well. In contrast, limited access to financial resources often leads to social isolation to difficulties with social inclusion. The impacts of economic hardship or economic deprivation on older immigrants have been documented in the literature. For example, using 2010 data from the United States, Lee, Hong and Harm (Lee et al. 2014a) found that one fifth of elderly Korean immigrants lived in poverty, which is more than double the rate for the overall US elderly population (9.0%), and 45.0% of elderly Korean immigrants they studied were found to have income resources less than the amount needed to be self-sufficient. Compared to native born individuals in Finland, older immigrants from the Former Soviet Union statistically have an increased chance at

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experiencing poverty and thus are at risk at being excluded socially, economically, and emotionally (Heikkinen 2011). Older immigrants have lower socioeconomic status than other older people and are overrepresented among vulnerable, marginalized, and disadvantaged populations, primarily due to restrictive immigration policies and lack of integration strategies (Stewart et al. 2011). Various financial challenges may occur for older immigrants due to a precarious relationship to formal welfare rights, dependency on limited social security benefits, informal and intermittent employment histories as well as fiscal financial support from families.

3.2

Services, Amenities, and Mobility

Services, amenities and mobility refers to three separate areas, all of which relate to the sectors convenient for older immigrant adults. Services refer to things that older immigrants can access in terms of programs and social supports to enhance their quality of life. Amenities refer to nonessential services, recreational facilities, and parks that an older immigrant might access to improve their quality of life, these often require additional monetary funds. Rather than referring to one’s physical ability to move one’s body, mobility, in this sense, refers to access to private means of transportation or public transportation services to enable older immigrants to travel at will. Immigrants living and aging in a foreign country face numerous settlement and health challenges, creating a demand for essential health and social services. Accessing health and social service are integral factors promoting the quality of life of older immigrants (Lai and Chau 2007). However, numerous studies have found that despite their high need, aging immigrants underutilize health and social services due to multiple access barriers they encountered including language proficiency, cultural understanding of illness, health literacy, knowledge of the health care system, cost, lack of health insurance, transportation, location (e.g., availability and distance), and socioeconomic status (Stewart et al. 2011; Wang et al. 2019). These barriers to health and social care access are likely to have an even greater impact for aging immigrants because of their advanced years, decreasing mobility, and low socioeconomic status, which may, in turn, further affect their health status (Lai and Chau 2007). It is essential that older immigrants have access to local and commercial public spaces in order to obtain the resources they need to adequately participate in society. However, there is limited understanding of experience of older immigrants in terms of accessing public space such as recreational facilities, public libraries, and parks. A case study analyzing how older Chinese immigrants interact with green spaces on the Gold Coast in Australia found that parks are vital for older participants’ outdoor activities and green spaces can fulfill values of keeping healthy, maintaining active lifestyles, and being social, all of which benefit well-being (Gao et al. 2020). Their preferences for activities and a lack of accessibility to green spaces also negatively influenced the ability of older Chinese immigrants in the study to continue to be

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healthy, social, and engaged (Gao et al. 2020). Given the paucity of research specifically in this area, there is a need for further investigation of the experience in accessing basic amenities in the host country and how this affects the social inclusion of older immigrants. Transportation is an important part of the lives of older immigrants, as it facilitates individual’s access to services, amenities, and social activities. Without adequate transportation older immigrants risk not being able to be socially included with their peers. Studies analyzing older adults and transportation have shown many adults with lower socioeconomic status engaged in walking or public transport as a means of traveling from point A to point B. The lack of transportation and having to rely on family members for transportation was a key factor affecting older immigrants’ utilization of health care (Lai and Surood 2013; Wang et al. 2019). Information and Communications Technologies (ICTs) are also important amenities for older adults in the digital era; in its absence, digital exclusion or lack of or limited access to the benefits of technology negatively impacts the quality of life of older immigrants (Khvorostianov et al. 2012). Promoting access to the internet is advanced as one strategy for successful aging since it is a means of coping with both the challenges associated with aging, and also with the tremendous difficulties and losses related to immigration (Chen et al. 2020; Khvorostianov et al. 2012). A literature review examining the digital exclusion of older immigrants showed that socioeconomic status, language proficiency, degree of acculturation, level of education, and digital literacy are the most common factors leading to the disparities between native older adults and older immigrants in accessing ICTs. Although this is an emerging area, a significant knowledge gap on the motivations and attitudes of older immigrants in relation to ICTs and the impact of ICTs has been raised (Chen et al. 2020). In conclusion, services, amenities, and mobility are critical pieces for older immigrant adults to avoid social exclusion and to benefit their overall health and well-being.

3.3

Social Relations

Immigrant older adults, particularly those who have recently reached older age face several challenges associated with the loss of social networks (Northcott and Northcott 2010). Also, they may be less likely to participate in social and cultural activities and more resistant to relationships between members of different ethnocultural groups, such as romantic intergroup relationships or interethnic marriage, which are identified as measures of integration. Older immigrants report higher levels of loneliness and social isolation than nonimmigrant older adults (Gierveld et al. 2015; Guo and Stensland 2018; Johnson et al. 2017; Lee et al. 2014a). Migration is known to disrupt social networks and support available to immigrants, affecting their ability to age well, independently, and with dignity (Jang et al. 2015). However, the complex relationships between

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social, political, cultural, and economic factors in the post-migration context that lead to social isolation among older immigrants have not been explored in depth. Social relations, or those social relationships that people maintain and from which they gain needed resources and support, play a critical role in the determination of health and well-being, particularly in older immigrants (Li et al. 2019). A large part of social relations concerns cultural differences that result in a paradigm shift between one way of life and another. In this way, social relations for older immigrants can be increasingly difficult. As older adults often lose family members and friends in later life as a consequence of aging, it is of particular importance that older people have the chance to build a cohesive community to strengthen their sense of belonging to ethnic contexts (Lai et al. 2019). Because of this, social relations are increasingly important to the overall health and well-being of older immigrants (Lai et al. 2019). Institutional racism and agism also factor in the challenges that older immigrants may face when trying to engage socially with others in the community. For example, Albertini et al. (2019) proposed that the psychological, social, and economic difficulties connected with the process of migration, the stigma and social marginalization experienced in the country of arrival, and the desire to preserve the origin country’s cultural identity and traditions might actually help strengthen generational solidarity within families and, in doing so, engender higher degrees of cohesion and support exchange than those observed among both native populations and families remaining in the origin country.

3.4

Civic Participation

Civic participation refers to community, spiritual, and political volunteerism that allows for the individual to engage with organizations in a meaningful way (Torres and Serrat 2019). They advanced two prominent forms of civic participation: individual activities, such as prosocial behaviors directed toward nonkin, donation of money or in-kind support toward charities or NGOs, and collective activities, such as participation in volunteering, community, or charitable organizations as well as individual forms, such as voting, contacting political representatives, donating money to political parties and organizations, signing petitions, boycotting, or political consumption activities, and collective forms, such as protest activities, participation in political organizations or forums, or participation in social movement organizations. In a study analyzing civic engagement, Neville et al. (2018) concluded that being in a position to provide support to others enhanced feelings of social inclusion within the community for older immigrants, despite the presence of language barriers and cultural differences. Limited social and civic participation has been found to restrict opportunities to build social and human capital, placing immigrants in disadvantageous positions in society that potentially causes reductions in human contact (Lee et al. 2014b). Although Lai and Andruske (2014) did not focus specifically on civic participation in their study of aging Chinese in Canada, many study respondents reported being engaged civically within their communities through formal involvement in

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social groups and organizations. The authors concluded that this group’s civic engagement benefited the community and other older people. A study of older African immigrants in Norway found that barriers to civic participation included poor health, lack of information about relevant organizations, language difficulties, and mistrust toward organizations, while organizations’ perceived effectiveness in addressing community issues motivated civic participation (Gele and Harsløf 2012). Senior immigrants, as a group, encompass considerable diversity and this influences who is able to participate in civic activities. Barriers for participation vary according to older people’s gender and embodied cultural and socioeconomic characteristics. For instance, gender shapes the civic roles expected for older men and women, and the benefits accrue from participation vary according to older people’s socioeconomic status. Civic participation has been deemed by researchers as one of the components of successful aging for older adults; without the ability for older adults to integrate themselves in life outside of their home they can become increasingly isolated socially (Neville et al. 2018). Despite these findings, the nature, experience, facilitators, and barriers of civic participation among aging immigrants remain unclear and call for more research on this topic (Torres and Serrat 2019).

3.5

Neighborhood and Community

Neighborhood and community aspects related to social exclusion describe both the geographical and interpersonal relationships that older immigrant adults participate in within their daily lives. A neighborhood can refer to a specific geographic location where older immigrants live in close proximity to one another, such as a street within one town. A community refers to the interpersonal relationships that an individual develops through recreational, emotional, shared values, and common goals. The neighborhood dimension has a significant impact in later life: first, the greater time spent at home and in the locality following retirement; second, increased reliance upon neighborhood relationships for support in old age; third, the length of time likely to have been spent residing in the same locality; and fourth, emotional bonds and attachments arising from associations within the community (Scharf et al. 2005; Walsh et al. 2017). Older immigrants are particularly susceptible to being impacted by their neighborhood environment due to cultural differences and poor language proficiency after migration, which limit their mobility (Lai et al. 2019). For instance, Lai et al.’s (2019) study examining environmental factors on social engagement of older Chinese immigrants in the greater Chicago indicated that neighborhood cohesion and sense of community were positively related to more engagement in social activities, and neighborhood cohesion has a stronger association with social engagement than other environmental factors and most individual-level factors. Perhaps surprisingly, neighborhood disorder was also positively related to social activity as well, which warrants further investigation. Older adults frequently experience a sense of community as a form of social capital – an indicator of a variety of social ties and the quality of social networks available within a community, especially at the neighborhood level (Caxaj and Gill

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2017). In a study analyzing the experience of older immigrant Moroccan women in the Netherlands, Conkova and Lindenberg (2018) concluded that the migrant women often developed strong social ties within their residential neighborhoods as well as within religious or cultural activities due to shared personality traits, that is, patterned ways of thinking, feeling, and behaving and beliefs. Shared values, personality traits, and beliefs help individuals develop and maintain a shared sense of community and neighborhood cohesion, which ultimately increases their ability to maintain social engagement and inclusion.

3.6

Sociocultural Aspects of Society

Sociocultural factors are the combination of social and cultural factors that impact older immigrants’ quality of life in society. The social factors of older immigrants are not only relevant to their social relations but also the social factors which serve to inhibit their full participation in the social aspects of society. The family unit, economy, educational, and political systems are major aspects of the social structures that influence older immigrants. Cultural aspects, such as language, spirituality, value systems, food, and technology further determine how older immigrants are able to interact in the social environment. Both social and cultural aspects of society play a role in how older immigrants feel welcomed in a community and also how others welcome them. This too determines whether older immigrants have identity exclusion, symbolic and discourse exclusion, or experience agism and age discrimination, or discrimination for their cultural background, or race. Studies of discrimination in older immigrants have shown perceived discrimination among visible minority older immigrant to be common and associated with negative health outcomes including more functional limitations and higher rates of depressive symptoms and suicide ideation (Li et al. 2018; Nkimbeng et al. 2020). Approximately one-quarter of Korean American older adults reported experiencing disrespect or discrimination in medical settings, which they attributed to their ethnic background, and older African immigrants’ experiences of discrimination in the United States included general dislike of their presence in the country, accents, unfair treatment at work, health care, or with police (Nkimbeng et al. 2020). Research has also documented that older immigrant adults who more closely identified with their racial and immigrant identity were more likely to recognize acts of discrimination characterized by unfair treatment. This, for Asian populations, was more commonly experienced and over time becomes damaging to mental health (Li et al. 2018). Sociocultural factors in society vary within individual older immigrant and are neither stagnant nor homogeneous. Macrolevel factors of sociocultural characteristics of immigrants’ ethnic background and those of the mainstream population in the receiving country are seldom used in a comparative sense to understand the potential diversity of experiences of older immigrants. Notwithstanding the importance of transitions during the life course, international migration has its portent in creating opportunities and constraints for older persons to optimize and diversify social contacts in their new environment (Gierveld et al. 2015). Although many potential

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factors may lead to disparities in life satisfaction, accumulating research has identified socioeconomic status, health, social integration, social relationships, social support, and perceived discrimination as significant contributors to how individuals interact with society in a sociocultural sense.

4

Barriers to Social Inclusion

Social exclusion among older immigrant is more complex than previously envisioned. It is a consequence of the multiple intersecting barriers to social inclusion related to ethno-cultural community and geographical location among other factors. The first category of barriers to social inclusion or contributing factors to immigrant older adults’ experience of social exclusion is acculturation challenges such as preservation of specific cultural values and cultural adaption difficulties, proficiency in official languages, and dependence on family members (Guo and Stensland 2018; Hossen and Westhues 2013). Acculturation was frequently identified as influencing experiences and processes of social inclusion, a process of change in an individual’s cultural patterns including the development of “bicultural” identities, and ethno-cultural practices within family, social, and institutional contexts, but not necessarily in values of beliefs, involving the incorporation of traditional cultural systems in the host country. Although acculturation can occur at various levels, at its most basic, it is closely related to identity and belonging. An Australian study proposed three dynamic acculturation pathways for older immigrants: (a) identifying with the ethnic culture while embracing aspects of Australian culture, (b) identifying with Australian culture while participating in the ethnic culture, and (c) identifying with both cultures while maintaining the way of life of the ethnic culture (Liu et al. 2020). In the study, participants’ narratives suggest that older immigrants’ life in the settlement country involves ongoing negotiation across people, culture, and relationships, which varied among older immigrants, and influenced their experience and process of social inclusion. Younger age at immigration, and greater length of time spent in the host country, has been associated with greater acculturation and inclusion (Liu et al. 2020). Despite the association between positive relation between acculturation and social inclusion, many immigrant older adults adhere to values specific to their native culture, remain immersed in their own cultural traditions, and struggle to adapt to values of the host society. For example, both Chinese and Korean cultures emphasize family harmony and group solidarity over individual rights, and the values of family preservation and harmony determine older immigrants’ social behaviors in the host society. Consequently, mistreated older Chinese and Korean Americans were not favorable toward reporting abuse or seeking outside interventions (Lee et al. 2014b). They also had a greater tolerance for financial exploitation than other older immigrants as they tended to support their adult children financially often to the detriment of their own financial well-being in their later life, which

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increased their risks of suffering from economic deprivation and exclusion (Lee et al. 2014a). Gaining proficiency in the language of the host country is a key element to successful inclusion of new immigrants and language proficiency may reduce social isolation among older immigrants. Acquiring host language proficiency is, however, difficult for many older immigrants (Guo and Stensland 2018). Having limited understanding of the host language contributed to multiple challenges in older immigrants’ daily lives, including reduced participation in available social activities, difficulties in access and utilization of social and health care, influencing social interactions, civic participation, and labor market participation, increased feelings of loneliness, feeling like an outsider and being out of place, and being socially excluded and confined to their homes, which culminated in increased vulnerability (Hossen and Westhues 2013; Kim et al. 2013). The limited understanding of language also renders older immigrants’ dependent on their family members. Family is the key driver for immigration in later life and family relationships and adequate family support play critical roles in shaping the experience of social inclusion in the host country for newly immigrant elders (Chang et al. 2013; Guo et al. 2019; Hossen and Westhues 2013). This is particularly true for elderly immigrants with family sponsored or immigration for the purpose of family reunion. In this case, older adults are reliant on their adult children for financial, emotional, and social support, including assistance managing older adults’ personal affairs, such as making medical appointments and providing transportation, often due to poor language proficiency. It is common for older immigrants to take on family responsibilities such as caring for grandchildren, which diminish over time as older adults become more involved in social activities outside of the household. When adult children fail to provide adequate support to older immigrants, or intergenerational conflicts occur due to intergenerational differences in language ability, acculturation, and expectation and beliefs on parenting and family relationships, existing vulnerabilities for older adults due to their hardship and psychological distress related to immigration are exacerbated. Greater conflict in the family was associated with an increased likelihood of service use as conflictual relations may act as a significant stressor in older immigrants’ lives (Guo et al. 2019). As an example, one study in the United States found Chinese older immigrants with more negative family relations had more physician visits and were marginally more likely to be hospitalized than those with fewer negative family relations (Guo et al. 2019). On the contrary, studies also highlighted the significance of the emotional aspects of family relations in facilitating service use of older immigrants. Ta et al. (2010), for instance, reported that having emotionally close family ties was predictive of a reduced likelihood of using mental health service among Asian immigrants. These studies suggest that nature of family relations contributes to older immigrants’ process and experience of social inclusion and social exclusion. There is a longstanding debate on whether poor health status causes social exclusion or social exclusion causes poor health status. A longitudinal study on older adults in general found that poor health predicted social exclusion 1–2 years later and social exclusion predicted later declines in health (Sacker et al. 2017). This

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relationship is not well understood among older immigrants. However, it has been well documented that older immigrants report higher feelings of loneliness and face the greatest mental health problems among all the immigrant populations (Guo and Stensland 2018; Kim et al. 2015; Ladin and Reinhold 2013; Neville et al. 2018). The physical and mental health challenges found among older immigrant populations could serve as barriers for social inclusion. As an example, the high mental health risks among older Korean and Chinese Americans complicated by social stigma against mental health diseases resulted in their reluctance to seek professional mental health services; they were more likely to receive services through ethnic community agencies or churches rather than formal service providers (Kim et al. 2015). Alternatively, good health permitted older immigrants to remain independent and socially engaged (Conkova and Lindenberg 2018). Community and structural factors such as the availability of ethno-specific resources and other community services also influenced the social exclusion and inclusion of older immigrants. Older immigrants often reported unfamiliarity with services or not connected with the broader community, due to the language and cultural adaption difficulties or a lack of information and awareness about relevant opportunities and organizations. Practitioners’ inability to understand the service users’ culture was further identified as a central barrier in using services (Lai and Chau 2007). Therefore, culturally based and culturally relevant services play important roles in the process of social inclusion for older immigrants. However, geographical differences in ethnic density and neighborhood ethno-cultural composition may result in different impacts on older immigrants’ process of social inclusion. For example, when compared to ethnic neighborhood in large cities, adequate and appropriate resources are not readily available in low ethnic population density areas, in which case, older immigrants may be more likely to depend on family or friends for support, which can increase the risk of being socially excluded (Jang et al. 2015). However, living in an ethnic enclave can also become a source of conflict, abuse, and pressure to conform to cultural and religious expectations and thus increased acculturation and social inclusion challenges for older immigrants. In addition, broader immigration processes, such as immigration sponsorship agreements (associated with family dependence and limited access to assistance) could serve as barriers for older immigrants’ goals to social inclusion. For example, governmental policies and restrictions may increase social exclusion by, for example, having immigrant seniors relocated to be economically and instrumentally dependent on their adult children (Caxaj and Gill 2017). Lack of government-funded social programs ultimately force religious organizations, which have limited financial resources and expertise, to support older immigrant people (Salami et al. 2019). With regard to older immigrants, prior research indicates economic hardship brings about profound consequences for their social, psychological, and physical well-being; it is also a consistent predictor of exclusion in social relations and neighborhood including social isolation and lack of sense of belonging in the community (Lee et al. 2014a). Social exclusion challenges related to age, gender, race, and cultural discrimination can interfere with older adults’ participation in social activities and utilization of social services. For example, the gender-based

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discrimination older Muslim women experienced both from within their communities and from mainstream society, excluded them from participating in meaningful roles (Salami et al. 2019). Social exclusion then can be described as a dynamic multidimensional process that is interactive in nature, with a complex interplay between and within domains serving as a determinant, indicator and/or outcome of social exclusion.

5

Policy Implications and Practice Recommendations

The social exclusion issues and the social inclusion process of older immigrant are complex, and confounded by the dynamic influences of individual, family, community, and broader societal, political, and cultural level factors. Hence, an integrative collaborative approach is essential to address the challenges and barriers to enhance the well-being of older immigrants within the context of global immigration and cultural diversity. Based on current literature on social inclusion of older immigrants, a few policy implications and practice recommendations should be considered. First and foremost, policies and programs should address older immigrants’ challenges related to financial and material resources in order to promote economic inclusion among this population. Disparities within particular ethno-cultural or minority populations, particularly those related to economic integration outcomes, such as gender and various language groups should be examined. Evaluation of existing pension and assistance programs should be undertaken with the aim of reducing financial disparities for older immigrants. Approaches to economic inclusion should address not only “objective” measures such as income, employment, and home ownership, but should also consider older adults’ subjective satisfaction with their financial situation, job, and housing, resulting in the provision of opportunities and channels for better access to financial and related resources. For instance, policies to promote employment opportunities for older immigrants should facilitate better “matching” between their qualifications, needs, and employment opportunities. Efforts to address barriers to employment ought to create inclusive labor market/ workforce, as well as building labor market capacity to increase opportunities and address discrimination in hiring and in the workplace. Employment training should be extended to immigrant older workers, including the recognition of credentials and prior experience, and the chance to update their knowledge and skills based on the employment opportunities. Policies and programs for addressing social inclusion in social relations, neighborhood, and community should prioritize programs and services that enable immigrant older adults to expand their social network and contacts, social support, to reduce feeling of loneliness and social isolation, and to connect this population to the wider community. Services and programs ought to target the enhancement of social relations, community connections and supports, and engagement for older immigrants, by building on local networks and facilitating participation in cultural, religious, and recreational activities. For example, an environmental scan report on programs and services addressing social isolation among immigrant and refugee

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seniors shows the most common programs and services provided are English language training, settlement services, social support, computer classes, and information and education on accessing available resources as most of these programs also provided opportunities for interactions with others and building friendship, which could prevent social isolation of older immigrants (Johnson et al. 2017). Despite language and cultural differences, many older immigrant adults expressed interest in connecting with mainstream older adults, thus, creating opportunities for interaction between immigrant older adults and nonimmigrant communities are essential. For example, social networking programs should be established to connect mainstream older adults with minority older adults of diverse ethno-cultural backgrounds to facilitate mutual understanding. Current mentorship programs also could be expanded from an employment-related focus on working adults to include older immigrant older adults. To overcome transportation barriers associated with service access, mentorship or network programs ought to be neighborhood based, facilitating connections between mentors and older immigrant adults within the same living neighborhood, which will also decrease social exclusion related to neighborhood and communities. In addition, family-based interventions and strategies to address intergenerational conflicts are needed. Moreover, more intergenerational programs should be developed to increase connections between immigrant older adults and children and youth in ethno-cultural and broader communities. Social service agencies also should reconsider how spaces can be transformed to support culturally sensitive programs and services to meet the diverse needs of older adults. For example, shared spaces that promote social cohesion, inclusion, and integration can be fostered to better meet the needs of immigrants from diverse cultural and linguistic backgrounds. In addition to using resources in the broader communities, connecting older adults to the wider community could also draw on social capital and social resources from within their respective immigrant communities, such as utilizing the expertise and experience of long-term immigrants in local neighborhoods, facilitating the effective development of stronger social connections and ties among older immigrant adults in these local communities, which could, in turn, increase neighborhood cohesion and sense of belonging for immigrant older adults. Regarding programs and services to address social exclusion related to services, amenities and mobility, researchers have recommended more ethno-culturally based programs targeting the specific needs of immigrant older adults rather than taking a ‘one size fits all’ approach; culturally sensitive services generate a sense of comfort and identity among older people and their families accessing the services. The design and implementation of culturally sensitive and appropriate services ought to involve awareness and consideration of immigrant older adults’ cultural or traditional values, beliefs, and practices, including their specific needs and factors (e.g., immigration and acculturative stress, language proficiency, social and family relationships) impacting their well-being and choices, and different experiences or strategies of social inclusion. Language barriers should also be addressed in health, social, and other sectors to facilitate social inclusion for immigrant older adults, through hiring multi-linguistic service providers, providing language training, and interpretation services, as well as having multi-language materials (e.g., service information,

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political information), and alternative methods of communication (e.g., family, cultural leaders, local media, and ICTs) (Neville et al. 2018; Stewart et al. 2011). Interventions also should target policy-makers, service providers, and other stakeholders, to enhance cultural awareness and competence, and consideration of acculturation and inclusion experiences and needs of older immigrants, as well as the promotion of inter-sectorial collaboration and collaboration with older immigrants, family members, cultural community organizations, and mainstream organizations (Stewart et al. 2011). For better utilization of services, amenities, and increased mobility of older adults, transportation barriers must be reduced. For example, except for accessing public transportation, more organizations or programs should be established to focus on addressing transportation challenges faced by older adults such as providing subsides for emergent use of taxi when transportation services are not available or developing volunteer driver platforms to connect volunteers to older immigrants in need of transportation services. The use of a travel buddy system to enhance competence of immigrant older adults in navigating the public transportation system should also be further considered and expanded. The design of the neighborhood and provision of neighborhood amenities also should enhance social participation, such as designation of inclusive and age-friendly public space, which is especially important for older people to be able to continue to age in place. Policy approaches and service efforts to promote civic inclusion of immigrant older adults should encourage engagement in volunteer activities and provide opportunities for volunteering. Volunteering was recognized as vital to fostering inclusion of older people in the community, and supporting older immigrants to be active volunteers in their communities is, thus, an integral feature of social inclusion and would render these older people’s societal contributions visible (Torres and Serrat 2019). Promoting civic inclusion of immigrant older adults should also boost voting in elections and address any existing barriers to voting (e.g., awareness of voting rights, knowledge of political system of the host country, access to polling stations). Efforts should promote and facilitate civic and political integration of different language groups. Through senior-serving organizations and immigrantserving organizations, civic and political participation should also be promoted using multilingual strategies, allowing nonofficial language older adults to be included in the political arena. Policy and practice efforts ought to address challenges of social exclusion in sociocultural structural aspects such as related problems of agism, racism, and discrimination. With the increasing diversity of the older adult population, interventions and policies should be enhanced to decrease age- or race-related discrimination and eliminate health inequities in racial/ethnic minorities and immigrant older adults. Programs for increasing cultural awareness and recognizing age/racial/ethnic stereotypes, and the impact of discrimination on the well-being of immigrant older adults among social and health care providers could facilitate reductions in discriminatory experiences during clinical encounters (Li et al. 2018; Nkimbeng et al. 2020). There is also a need to develop psychological education and emotional programs to coach law enforcement, effective coping strategies, and provide emotional support for older immigrants who experienced discrimination (Nkimbeng et al. 2020).

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Finally, the enhancement of social inclusion for older immigrants highlights the fundamental role for partnerships and collaborations based on a solid understanding of older immigrant, family, neighborhood, ethnicity, and geographic contexts. Programs, services, and policies supporting older immigrants are typically siloed within different ministries, organizations, and levels of government, and as such, have not been responsive to the vast and dynamic changes in terms of aging and immigration. The successful social inclusion of older immigrants into communities requires active participation and involvement of communities and local government. This includes ensuring appropriate representation of older immigrant groups on community and local government committees involved in planning community spaces, services, events, or initiatives that contribute to promoting social inclusion. More importantly, it is critical that programs include the voices and perspectives of immigrant older adults and their family members in the planning, design, engagement, implementation, and monitoring and evaluation of the programs for better social inclusion outcomes. Strategies and programs should be encouraged to adopt community-based participatory and strength-based approaches, through an empowerment lens since these approaches will contribute to older immigrant adults’ sense of empowerment and control, which are important to their well-being.

6

Conclusion and Future Directions

Following analysis of findings from the included studies, the importance of social inclusion for older immigrants was apparent. This chapter also reveals a need for a more specific and in-depth examination of social inclusion and exclusion among immigrant older adults with a focus on experiences and clear indicators and measures of these constructs. A comprehensive examination and more complete understanding of the systemic or policy level, institutional, or organizational/service level, and individual level facilitators and barriers to economic inclusion, civic participation, access to services, and social inclusion for immigrant older adults can inform the development of policies and services that are appropriate for culturally diverse clients. This knowledge is necessary to respond to the realities faced by older immigrants globally, as well as raise awareness among policy makers and service providers, about the importance of improving access to services and supports, cultural sensitivity in service delivery, and collaboration between sectors and with communities. Also, social inclusion requires further conceptual development by social gerontologists to better understand nonkin relationships in promoting inclusion (Scharf and Keating 2012) and how the structural and societal positioning of all of these categorizations combine with aging processes to produce exclusion. Specific studies addressing exclusionary pathways of older immigrants remain limited, therefore warranting targeted research. For most of the older immigrants, family is the key source support. At the same time, challenges faced by the younger generations in the family would also cause distress to the older immigrants. Most older immigrants would not like to see themselves turning into a burden for their children and grandchildren. Livelihood

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issues, equity resource distribution and access issues, and discrimination and stereotypes faced by the younger immigrant family members would also play a significant role in creating negative impacts on the older immigrants’ social inclusion and well-being. Therefore, the future direction of programs and policies should go upstream by enhancing their effectiveness to address challenges faced by the younger generations of the older immigrants’ family. This would facilitate the older people themselves a sense of security and inclusion not just for themselves but also for the ones they care and love. Future direction on addressing older immigrants’ social inclusion and wellness should also consider the “second wave” of immigrants who will grow old from being mid-age immigrants. These are the ones who have settled in one country when they were young adults, currently in the middle age cohort. Despite the fact that they have worked hard to overcome the challenges they face as many other immigrants, the carryover effects of the negative experience of social exclusion will likely trigger other forms of disruption and distress when they enter into the life course of being in an older age. To proactively address social inclusion of older immigrants, strategies to start early with the mid-age immigrants should be readily planned.

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Men’s Sheds An Inclusive Space for Marginalized and Socially Excluded Males

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Males, Social Inclusion, and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Masculinity Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Theories of Gender Differentiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Gender Segregation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Gender Differences in Peer Socialization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Inclusion for Men and Boys Across the Lifespan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Addressing Social Inclusion for Men . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Men’s Sheds as Spaces for Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Supporting Marginalized Males . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Targeting at Risk Young Males . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Older Retired Males . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Men with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Connecting with Indigenous Males . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Men’s Shed for Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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R. Cordier (*) Social Work, Education and Community Wellbeing, Northumbria University, Newcastle upon Tyne, UK e mail: [email protected] N. Mahoney Curtin School of Allied Health, Curtin University, Perth, WA, Australia e mail: [email protected] N. J. Wilson School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_42

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Abstract

The desire for and drive towards establishing social contact with others are socially imbued in all human beings. However, across the lifespan, men and boys have different social networks and attain social connectedness in different ways to women and girls. Regardless, the sense of social connectedness that meaningful social contacts offer is important and forges an important buffer against adverse experiences. While everyone experiences difficult episodes, disruptions, and challenging transitions across the lifespan, men and boys on the social and gendered margins – referred to within the masculinities literature as experiencing a marginalized and/or subordinated masculinity – are at particular risk. In the Australian context, Men’s Sheds have emerged as a space that fosters social inclusion and identity. Men’s Sheds are community-based male-specific spaces centered on shared activities and socialization. Men’s Sheds have offered many Australian men and boys the catalyst to break out of socially excluded life situations and to gain a sense of masculine inclusion. Research has shown that Men’s Sheds can provide ideal spaces for targeted programs, such as mentoring and support groups, for a wide variety of men across all ages. This chapter will theoretically unpack the intersection of Men’s Sheds, the development of gender and masculinity, social inclusion, and illustrate how social exclusion and isolation can be countered though engagement with Men’s Sheds. Male-specific responses to mental health challenges and lifespan disruptions will be presented as points of intersect where a strong sense of inclusion can develop into feelings of exclusion and isolation. Keywords

Men’s Sheds · Masculinity · Marginalized men · Health promotion

1

Introduction

In this chapter, we discuss social inclusion as a contested and congested space, particularly within the context of men’s health and well-being. In Australian, Men’s Sheds have emerged as a space that fosters social inclusion and identity. The chapter unpacks how Men’s Sheds is an important context for achieving social inclusion aspirations, by examining the intersections of Men’s Sheds, the development of gender, masculinity, and social inclusion. Men’s Sheds are community-based malespecific spaces centered on shared activities and socialization. Men’s Sheds have offered many Australian men and boys the catalyst to break out of socially excluded life situations and to gain a sense of masculine inclusion. We illustrate how social exclusion and isolation can be countered though engagement with Men’s Sheds. The social inclusion literature is replete with a diversity of contested definitions, interpretations, and with multiple, and often ideologically driven, theoretical underpinnings (Cordier et al. 2017), no doubt covered in intimate detail across the

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chapters of this voluminous text. While unpacking these differences is outside the scope of this chapter, social inclusion, as an objective outcome, has been mooted as a remedy for almost any form of stated disadvantage, including homelessness, mental illness, unemployment, poor health, and family breakdown. At a most fundamental level, social inclusion has been conceptually defined as an interrelationship between participation and access to resources that enable participation. Further, social inclusion has also historically been largely defined by its opposite, or to be more precise, by what is understood to be social exclusion. Nevertheless, taking a more evidence-based approach, social inclusion can be defined as having three overarching domains: participation, connectedness and a sense of belonging, and citizenship and rights (Cordier et al. 2017). Informed by research on participation and people with intellectual disability, who likely face more barriers to inclusion that most in society (Wilson et al. 2017), there is strong support for authors who state that social inclusion is not an absolute or dichotomous construct. Rather, one may posit that relative social inclusion is a better reflection of the true complexity of the interplay between personal and environmental factors, where levels of inclusion changes across time, roles, and contexts. For instance, an adult male who works as a nurse may feel a strong sense of social inclusion as a member of the local football club where he socializes on weekends, but feel significantly less so at work within a female dominated profession where constructs of gendered power and gendered relations are vastly different and shape the way the man interacts with both peers and patients. Furthermore, in some instances, participation may be a choice, where an individual makes a decision not to seek inclusion within a given context or group, such as having a job or choosing homelessness, as their preference is to live in solitude or be self-sufficient. Making the contested space of social inclusion even murkier, is the apparent politicization of the social inclusion “agenda,” and the relatively recent historical addition of social inclusion within the political sphere, to counter well documented, and some might argue historically pervasive, facets of social exclusion that overlap many preexisting policy areas. For instance, when formally embedded in UK policy by Tony Blair’s Labour government through the specifically funded Social Exclusion Unit in 1997 (Howarth et al. 2001), this unit was later replaced by the Social Exclusion Taskforce in 2006, which was then abolished altogether by David Cameron’s Conservative government in 2010. In the Australian context, one such funding stream from the Australian Department of Health has seen millions of dollars directed at the Australian Men’s Sheds movement. Australian Men’s Sheds have continued to receive small amounts of funding. Before unpacking in detail the published literature and suite of programs offered at Australian Men’s Sheds, it is prudent to first reflect on the unique Australian phenomena of Men’s Sheds and how they ascended from the grassroots to being, for many, a part of the national male identity. In the space of just over three decades to 2012, from the first shed developed in rural Albury, NSW (Misan et al. 2008), over 600 Men’s Sheds were reported to be operational around Australia (Wilson and Cordier 2013). In just 8 years later, The Australian Men’s Sheds Association (2020), the national association for Men’s Sheds that was founded in 2007, states that this

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number has nearly doubled to approximately 1,200 operational Men’s Sheds across Australia. Of note is that the spread of Men’s Sheds appears limited to nations with a strong Anglo-Irish foundation, such as Canada, New Zealand, Ireland, and England, with perhaps Ireland being second to Australia in terms of proportional growth of Men’s Sheds. So, what is it about the Australian masculine identity that might offer some insights into why Men’s Sheds have taken off in Australia?

2

Males, Social Inclusion, and Health

The continuation of funding from the Department of Health to Australian Men’s Sheds is critical, in particular for the individuals and groups of marginalized men whose health and well-being benefits from participation at Men’s Sheds. What is important to focus on briefly first, however, are the gendered health disparities facing some Australian males, and why the range of activities, the opportunities for participation, and the reported sense of inclusion provided by Men’s Sheds are needed. That is, not only do men and boys face gendered health morbidities and mortality rates that are very different to women and girls, but they also have different social networks and attain social connectedness in different ways. Gendered health disparities among Australian men can be illustrated as follows: (a) three in four Australian men are overweight or obese, (b) more than nine in ten people killed at work are men, (c) life expectancy for males is lower across all age ranges compared with females’ life expectancy, and (d) three out of every four completed suicides are males (Australian Institute of Health and Welfare 2019, 2020). Recent Australian research from the Australian Longitudinal Study of Male Health about suicidal ideation found that dominant masculine notions of being selfreliant places males at increased risk of suicide. The notion of poor physical and mental health outcomes for men are exacerbated by poor help-seeking behaviors. For example, if men did experience mental health distress, almost 25% of men would not seek assistance from anyone and 80% would either be unlikely, or very unlikely, to reach out to a telephone helpline (Terhaag et al. 2020). Unpacking this further, approximately 4% of Australian males’ self-report of having no close friends at all, with social support significantly lower for these males, when compared to Australian males with at least one close friend. The wider literature on the topic has previously revealed that help-seeking behaviors in women are different to men. In fact, men in general, not just those with no friends, are less likely to seek help, and health and social interventions should be gender appropriate to address the issue of poor help-seeking behaviors among men. The issue of help-seeking has been explored within the masculinities literature where conformity to masculine norms, such as the stoic Aussie bloke, are reportedly noted to hinder help-seeking behaviors which consequently can lead to poorer health outcomes (Seidler et al. 2016). Of note is that while the nature and frequency of helpseeking is fluid across the life course, in general men are more likely to seek help for physical problems, rather than psychosocial problems. Nevertheless, Seidler et al. (2016) noted in their systematic review that men prefer collaborative interventions,

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such as action-based models that include some element of problem-solving. It is theoretically possible that not all men do not want to seek help, instead it is more plausible that the types of help-seeking models on offer are not well suited to men. Certainly, men do care about their health, their families, and their roles within society. As noted by Adegbosin et al. (2019), the masculine coherence between how Australian men look, think, and act is constructed based on ideals of what makes a good and moral man, and that these character traits are centered on the man’s actions as well as being fit and healthy. Doing is at the core of men’s motivation to be, and stay, healthy. As a recurring theme in the literature, doing is at the core of the Men’s Sheds movement’s and that “men talk shoulder-to-shoulder.”

3

Masculinity Theory

Perhaps the most prominent author and theorist within studies of masculinity/ies has been the Australian sociologist, Raewyn (formerly Bob) Connell, whose gendered hierarchy sought to theorize the multitude of masculinities, all shaped by class, culture, age, function, and status (Connell 1998). The four broad layers of this hierarchy of masculinities are hegemonic, complicit, subordinate, and marginalized, where actual, and not imagined, gendered power is realized through implicit association with patriarchy and the sociocultural desire of the heteronormative ideal. In the Australian masculine context, hegemonic masculinity is achieved by markers of success such as being independent, being in a stable heterosexual relationship, and the virtue of fatherhood (Smith 2007). Although Connell’s hierarchy has achieved an elevated, and often cited, status within the male health and masculinities literature, several critiques have emerged arguing that although there is some evidence of gendered hierarchies still present within Western societies, such as Australia, it does not explain every male’s experience of and alignment to a particular masculine ideal. For instance, the lives of males with intellectual disability have been described as widely marginalized, however, that this marginalization has very little, if anything, to do with gendered hierarchies or being a patriarchal dividend. Instead, that the disadvantage of males with intellectual disability is centered on their cognitive disability and associated inequities (Wilson et al. 2013b). An alternative to Connell’s (1998) theoretical framework has been offered by Holter (2005), who makes the point that society is filled with a whole host of structural inequalities with gender one part of a wider system of meaning, as opposed to viewing gender as a response to largely dismantled systems of patriarchy. Further, many men’s health researchers also make the point that connecting the so-called hegemonic masculine ideal to inequalities, such as poorer male health outcomes, has been unhelpful, given that this explanation inadvertently pathologizes male behavior as being problematic per se (Smith 2007). The type of male traits and behaviors that are needed to not only conceptualize the formation of a local community group, but also to organize and execute this, cannot be explained by any theoretical framework based on gendered power and the existence of gendered hierarchies. Further, they are also likely not behaviors based

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on the stereotypical identity of the laconic and laid-back “She’ll be right” Australian male. Instead, the Australian male traits that epitomize a shedder are potentially those noted previously by Adegbosin et al. (2019). That is, modern gendered constructs of the Australia male are a blend and crossover of strong physical traits, a moral basis to personality and character, and diverse roles and relationships. As eloquently stated by one of Adegbosin et al. (2019, p. 566)’s respondents, being an Australian male is about: . . . parenting in a managerial sense, be there for family, wife; to be a mentor and father type figure, to give positive direction and guidance. Overall supportive of society, family and business; also to have a good work ethic.

This strong coherence between very clear and salutogenic Australian masculine traits certainly resonates with contemporary views of masculinity. More so than explanations starting with assumptions of gendered power where exclusion of others with less gendered power would surely dominate. However, masculinity and the establishment of gender identity is not characteristics that men are born with. The next section provides a brief overview of how gender, gender differentiation, and gender identity is established across the lifespan, the impact of negative peer interactions on gender, and processes that promotes social inclusion for men and boys across the lifespan.

3.1

Gender

Gender, the socially acquired notions of masculinity and femininity by which women and men are identified, is a widely used and often misunderstood term. Gender is sometimes conflated with sex or used to refer only to women (Ruble et al. 2006). Gender roles, the household tasks and types of employment socially assigned to women and men, have become more fluid with economic advancement (Ruble et al. 2006). The impact that peers have on children’s adoption of gendered characteristics and the internalization of gender norms is well documented (Bussey and Bandura 1999; Ruble et al. 2006). Bussey and Bandura (1999) attributed multiple socialization functions to peers, including the modeling of gendered characteristics within samesex peer groups, reinforcement of gender typical behaviors, and sanctioning of deviations from gender norms. Even though there is substantial evidence that children respond negatively to peers who display cross-sex characteristics and behaviors (Owen Blakemore 2003) and that children engage largely in same-sex play and relationships, the quantum of evidence that these processes impact children’s gender role development is rather limited. Likewise, there is substantial individual variability in adhering to traditional gender roles (Sandberg et al. 1993). Most children occasionally act in gender atypical ways; however, a small percentage (10% of boys and 20% of girls) act in considerably more gender atypical ways than their peers (Sandberg et al. 1993). Children resist befriending peers whose

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behavior is gender-atypical, while children with gender atypical characteristics and behavior are often disliked and marginalized by peers. There is growing evidence to suggest that gender atypicality places children at risk for being the target of more direct forms of bullying compared with gender typical peers. This notion speaks to the theory that negative peer reactions have long been thought to elicit gender conformity among children (Owen Blakemore 2003). For instance, preschool children are reported to react negatively to displays of gender-atypical behavior (Owen Blakemore 2003). However, there is limited evidence to support the proposition that negative peer feedback results in reduced gender atypicality.

3.2

Theories of Gender Differentiation

Gender differentiation is impacted by three main factors: social, biological, and cognitive factors (Ruble et al. 2006). It is widely accepted that two or more kinds of factors work congruously to effect gender differentiation. For example, young people’s exposure to male and female models and consequences received for gendertyped behavior, shaped their thinking, which, in turn affect their gendered conduct (Bussey and Bandura 1999).

3.2.1 Social Factors The family plays an important role in socializing gender. Traditional attitude toward gender roles is an intergenerational pattern. There is a strong association between parents and young people themselves expressing traditional attitudes toward gender roles. Interestingly, girls appear to be more susceptible to certain family influences than boys (Galambos et al. 2009). Peers also play an important role in socializing gender. The more time young males spend interacting with male, as opposed to female peers, the more gender typed their personality traits and interests become (McHale et al. 2009). The nature of the discourse young people has with their peers is also of importance. For example, the more frequently boys make disparaging remarks about females towards male peers, the more they aggress toward female relationship partners later (Capaldi et al. 2001). 3.2.2 Biological Factors Several facets of gender typing are heritable. Pubertal hormones affect gender differentiation as well, and in several ways. Hormones can encourage aggression (Galambos et al. 2009) and sexual interest and activity especially for boys. Interestingly, there are also gendered differences at a biological level where it has been found that social exclusion can reduce testosterone levels in both men and women, whereas social inclusion increases testosterone only in males (Seidel et al. 2013). Testosterone is not only an anabolic hormone involved in overall physical health but is also vital to feelings of well-being. Sexual orientation, however, typically develops before puberty, usually by age 10 (McClintock and Herdt 1996). The timing of puberty is important, with early

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puberty carrying risks for girls, whereas late rather than early puberty is more often associated with adjustment problems (e.g., peer rejection) for boys (Weichold et al. 2003). However, it is the interaction between biological and social-context influences that is salient. For example, a combination of high testosterone and poor parent–child relationship quality is associated with risk-taking behaviors.

3.2.3 Cognitive Factors Contextual cues, such as peer provocation and relationship threat, trigger different social information processing by males and females. Gender differentiation may be shaped by the confluence of two kinds of gender cognitions: gender identity and gender stereotypes. First, people adopt an attribute they associate with a gender category whereby they emulate a gender stereotype to the extent that they identify with that gender (Greenwald et al. 2002). Second, each young person develops a fairly unique combination of gender identity and gender stereotype elements. For example, a young male’s gender identity might be marked by thoughts of gender typicality and concomitant gender conformity, while his stereotypes may be typified by masculine ideology and high ambivalent sexism. These combinations of personal identity-plus-stereotype patterns, or gender cognition signatures, are viewed as causal cognitive systems that influence young people’s efforts to self-regulate. Higher levels of gender identity are expected to encourage young people to emulate the gender stereotypes they endorse. Many stereotypes are context specific and the young person’s gender cognition signatures influences his or her social information processing and the resulting emotion and behavior (e.g., anger and punching someone).

3.3

Gender Segregation

Children become increasingly sex-segregated in their social interactions. By the age of 3, children are more likely to interact with same-sex peers than cross-sex peers (Rose and Rudolph 2006). Engagement in mostly same-sex play and relationships plays an important role in children’s gender role development. Play behaviors, as well as communicative styles and forms of social influence, differ significantly between males and females. These differing interactive styles become increasingly entrenched, thereby generalizing across contexts and later social relationships (Maccoby 1990). Similarly, same-sex peer groups act as important socializing contexts within which gender normative behaviors are modeled and reinforced (Bussey and Bandura 1999). As a result of this sex-segregation, most children’s friendships are with same-sex peers (Rose and Rudolph 2006).

3.4

Gender Differences in Peer Socialization

Boys and girls form different social dynamics and relationship processes, and therefore, the mechanisms through which peer socialization occurs may differ for

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boys and girls (Rose and Rudolph 2006). Even though girls do report being marginalized and bullied by peers for gender-atypical behavior, boys receive more censure than girls and perceive more social pressure not to behave in gender-atypical ways. Associations between negative peer treatment and declines in gender-atypical behavior are observed in both genders, but the number of same-sex and cross-sex friendships have a stronger relation to changes in gender atypicality for boys than for girls (Sandberg et al. 1993).

3.4.1 Self-Concept Sex differences manifest in several facets of adolescents’ self-concepts. Self-esteem rests mainly on perceptions of acceptance and respect from others, and competence in valued domains (e.g., academics, sports) and body image have a strong influence on both sexes. Boys have stronger gender identity; compared with girls, boys view themselves as more gender typical and are more content with their gender. However, this is associated with greater pressure to conform with normative gender behaviors and their sexual identity is less fluid than that of females (Diamond and Butterworth 2008). 3.4.2 Social Relationships Sex differences are more evident in adolescents’ relationships with their peers than with their parents or siblings. Girls’ same-sex friendships are characterized by greater intimacy, self-disclosure, validation, and caring, but also by more sharing of misfortunes and jealousy. Conversely, the social relationships of boys are marked by more friendly competition, agentic and risky activities, excitement, direct control efforts, and inhibition of tender feelings and intimacy. These different styles expose males to externalizing behaviors (e.g., aggression, recklessness) but protect them from depression (Rose and Rudolph 2006). Most preadolescent and early adolescent friendships and group interactions are with same-sex peers. However, adolescents participate increasingly in mixed-sex groups and dating relationships. In Western societies, young people of both sexes who are named by peers as popular tend to be socially skilled, to wear stylish clothes, and to prefer indirect forms of aggression (e.g., gossip, social exclusion). Popular boys tend to be athletic, funny, defiant, and daring; popular girls tend to be attractive (and thin), snobby, and cliquish (Rose et al. 2011). Adolescents nominated as popular are not necessarily rated by peers as highly likable. 3.4.3 Aggression Young males are more likely to display more direct physical and verbal aggression toward same-sex others than females and their aggression is more often unprovoked, impulsive, and undeterred by danger or risk (Hyde et al. 2008). There is a sharp increase in serious violence by males in late adolescence, with childhood aggression predicting sustained aggression and school dropout in adolescence. The advent of social media has opened the door to new forms of bullying and victimization (both direct and indirect). Males and females participate about equally in electronic aggression, as both perpetrators and victims (Hinduja and Patchin

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2008). Sexting, whereby a girl sends a nude picture of herself to a boy, and the consequences thereof, such as humiliation and intimidation, are also growing problems. Likewise, boys who send photos of their genitalia are at risk of being charge with offences under various carriage service laws.

3.4.4 Negative Peer Treatment and Friendships on Gender The confluence of peer relationship processes on children’s development best accounts for the role of peers in young people’s development. Stereotype threat and cross-sex friendships may serve as the context in which stereotypes of genderatypical behavior are elicited. This stereotype initiation may intensify self-awareness of those traits which deviate from gender typical behavior and, in turn, lead to deeper concern about future negative stereotypes directed at them. Involvement in cross-sex friendships may lead to heightened gender-atypical behavior in the face of negative peer treatment. In response to being bullied, children may turn to friends for support (Hodges et al. 1999). Individuals tend to develop similar traits and behaviors as the people with whom they interact. For young people who mostly engage in same-sex friendships, negative peer treatment may elicit greater adherence to traditional gender norms. Conversely, young people who mostly engage in cross-sex friendships, negative peer treatment may lead to increased time spent with friends of the other gender, which will likely result in increased gender-atypical behavior. As boys grow into adolescents and adolescents mature into men, the mechanisms described before that facilitate both social exclusion and inclusion remain fairly constant.

4

Social Inclusion for Men and Boys Across the Lifespan

Psychological research dating back to the 1960s supports the hypothesis that males are more differentiated and independent when compared to females, and that females are more empathic and have a greater desire for intimacy than males (Lang-Takac and Osterweil 1992). While this differentiation in males has been described in this large body of psychological research by a range of diverse terms, such as agentic and allocentric, underpinning these sex differences is the belief that connectedness is a core part of the development and personality of being a woman. This is not to state that males are unable to develop and experience connectedness, rather that it is different and is instead a masculine connection with other males, and is rated as being less important to men and the performance of their masculinity. Studies of young adult males without any reported social or other marginalization show differences when compared to women and girls. For instance, male university students are reported to have more same-sex social interactions with the average number of social interactions remaining stable over time, when compared to females who have more overall social interactions (Wheeler and Nezlek 1977). Importantly, while issues of masculinity differently influence health and wellbeing for men and boys, such as through gendered help-seeking behaviors, likewise social inclusion differs for men and boys, and in particular more so for marginalized

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groups of men and boys. That is, life on the margins greatly exposes one to the gamut of factors that lead to exclusion and the risk of poorer lifelong outcomes. For instance, teenage boys who have behavioral, social, or emotional difficulties are at risk of ongoing deprivation, imbalance, and alienation related to their current and future occupations. Teenage males also display more risk-taking behaviors and are, therefore, at greater risk than teenage girls of sustaining acquired brain or spinal injuries, which has a devastating impact on immediate and future social inclusion. While the work years offer many men a place to be and feel socially connected, more Australian males are becoming increasingly disengaged from the workforce. Compared to females, male workforce disengagement has increased fourfold over the last 100 years, with a particularly rapid increased over the last five decades (Lattimore 2007). Although some reasons are linked to changing demographics, such as population aging and males having greater involvement in home and child care, many also disengage due to accident, chronic illness, permanent disability, or premature retirement, approximately half of whom receive the disability support pension and are thus also economically marginalized (Lattimore 2007). The middle age years are also said to be pivotal for many males for whom a so-called midlife crisis might evolve after decades at work, and who are now facing the second half of their lives and reflecting on issues such as changes in health, mortality, and their legacy to the next generation (Wethington 2000). In terms of those who have had a career, the issue of whether this was a failure or a success comes to the fore, as they start to disengage from the workplace as a location where their personal and social needs were met. The transition into retirement for older men also presents pivotal challenges as older men seek new ways of being and feeling occupied in meaningful pursuits (Wilson et al. 2013a). The risk of disengagement and social exclusion during this transitional phase, places these older men at risk of mental and physical health decline. Men’s Sheds offer many older Australian males a space to counter the social exclusion that can present following retirement. In fact, studies about the profile of Australian shedders shows an aging cohort with high prevalence of chronic illness, lifelong or acquired disability, and representing a diverse range of marginalized subgroups (Wilson et al. 2019). Further, Men’s Sheds support a range of socially inclusive activities, such as supporting their communities through a range of initiatives, including mentoring the disadvantaged and vulnerable (e.g., Cordier et al. 2016). The next section describes the role that Men’s Sheds play in promoting social inclusion for many marginalized boys and men.

5

Addressing Social Inclusion for Men

Previous sections of this chapter have covered the many ways that disruptions to social inclusion can occur and the impact these disruptions can have on males, in different points of their life. Across the lifespan, social exclusion can have impacts on men’s mental health, relationships, drug and alcohol use, involvement with the criminal justice system, housing, education, and sense of community. This section

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will cover how these disruptions, challenges, and the resulting impacts can be addressed. Increased recognition of the impact of disruptions to social inclusion for men has led to the advent of programs are being developed to support them. These programs, community groups and interventions, need to be tailored to the specific needs and challenges of men, in an environment where they feel comfortable. Although all men may experience social exclusion, each individual will experience it differently. To truly address social inclusion, programs need to consider the particular needs, interests, demographics (such as age, mobility, and ethnicity), and challenges the men face. Without considering these factors, these programs aiming to promote social inclusion for men will fail and, at worse, further promote exclusion for certain groups. Men’s Sheds, through their inherent supportive environment and the various programs they offer, have shown great potential in promoting social inclusion.

5.1

Men’s Sheds as Spaces for Inclusion

Community-based Men’s Sheds are a male-specific space for social inclusion that has gathered significant traction and attention in Australia. Men’s Sheds provide informal workshop-based spaces and resources for men to participate in, mainly wood and metalwork activities (Australian Mens Shed Association 2020). Having started in Australia, Men’s Sheds are now established in Canada, Denmark, Ireland, New Zealand, Scotland, Wales, England, and the United States (International Men’s Sheds Organisation 2021). Whether nationally or internationally, all Men’s Sheds operate under the motto that “Men don’t talk face to face, they talk shoulder to shoulder” (Australian Mens Shed Association 2020). This motto epitomizes the Men’s Sheds movement aspiration to provide masculine environments where men can engage in activities they enjoy alongside their peers, facilitated through both meaningful activities and social inclusion. Although activity-based spaces, a 2012 survey of Australian and international Men’s Sheds reported that the primary philosophy of sheds was to provide social opportunities for their members (Cordier and Wilson 2014). Since this survey, the impacts of Men’s Sheds on social inclusion, and wider impacts of well-being, has been increasingly studied with a growing evidence base beginning to support the efficacy of Sheds as a space that not only provides things for men to “do” but also most critically promotes social inclusion for a range of marginalized men. In 2009, Ballinger et al. (2009) conducted interviews with eight older members of a Men’s Shed program in rural Victoria, Australia, who lived in a particularly disadvantaged region. Although all eight received a government pension, only five were retired suggesting the others were on some form of welfare. The benefits that the men discussed in their interviews focused on the Shed being a place to belong, interact with others, and engage in activities with a sense of purpose. The program was described as “more than a place to do woodwork,” that was successful in facilitating social inclusion and meaningful occupations. One man described that, while he had a shed at home to work in, “I get lonely. The Men’s Shed is a place I can come and do things and have friends.” While the men were no longer able to

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participate in work, they derived a sense of masculine identity by pursuing work-like activities at the Men’s Shed (Ballinger et al. 2009). This study points to the way that Men’s Sheds provides an inviting space to “do things” appealing to the psyche and interests of many Australian males. In addition to being spaces to “do,” Men’s Sheds have also been shown to successfully support social interaction and reduce isolation. Many men who attend Men’s Sheds can be at risk of social isolation, which positions the Sheds has an ideal environment to address this (Ballinger et al. 2009). For instance, in a narrative review of literature, Wilson and Cordier (2013) found several studies that reported on the benefits of Men’s Sheds for social and emotional health. Findings from a 2-year program, specifically designed for men from culturally and linguistically diverse communities, found that all men who attended the Shed reported enhanced social connectedness and a sense of camaraderie at the Shed (Fildes et al. 2010). At baseline, the men in this program reported feeling socially isolated with a future having little to offer related to the limits of being under financial stress (Fildes et al. 2010). Through this engagement in shared activities, the men reported an increased sense of inclusion and community connection, and unexpected decreases in depression and suicidal thoughts (Fildes et al. 2010). Findings from a different study echoed these points; five older Australian men from different Sheds all reported gaining mutual support and camaraderie from having meaningful things to “do” at their respective Sheds (Ormsby et al. 2010). Men’s Sheds have also had an impact of the mental health of many attendees, such as helping to aid recovery and manage issues and related to depression and substance addictions (Ballinger et al. 2009). A salient quote highlighted by Fildes et al. (2010) was from a man who said that going to his local Men’s Shed helped them “. . .move away from the black hole” of suicidal thoughts.

5.2

Supporting Marginalized Males

The literature also highlights how many Men’s Sheds also provide targeted support to marginalized communities or subgroups that are socially isolated. The 2012 international survey described how over 80% of Men’s Sheds, regardless of country, targeted vulnerable communities, particularly elderly men and those experiencing mental health issues (Cordier and Wilson 2014). Other literature has also highlighted the importance of Men’s Sheds for an even wider range of socially isolated males such as older men entering retirement, older men with disabilities, teenage boys struggling with school, young adults with intellectual disability, and Indigenous Australian men (Hansji et al. 2015; Mahoney et al. 2020; Southcombe et al. 2014; Wilson et al. 2014, 2018).

5.3

Targeting at Risk Young Males

Young males can be at risk of behavioral issues, expulsion from school and, as a result, ongoing future disruption and social exclusion (Warrington et al. 2000). At school, young men may require support from male role models to shape positive

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concepts of masculinity, attitudes, and behavior (Warrington et al. 2000). Some of this support has been showed to be better coming from community-based spaces, outside of the pressures of formal schooling. Many Men’s Sheds offer intergenerational mentoring programs that offer this type of nonschool-based support. One Sydney-based study reported on an intergenerational mentoring program for teenage boys currently in Year 9 of high school who were identified as being socially withdrawn, disruptive, and lacking engagement with positive male role models (Wilson et al. 2014). After being linked with older male mentors over the duration of the program, the teenage boys stated that they not only enjoyed the program but also that it was based outside of the classroom (Wilson et al. 2014). In this context, the teenage boys were able to learn in a hands-on way and connect socially and emotionally with their older male mentors. Further, the mentees also related learning a sense of community service, something that contrasted to their disruptive behavior at the beginning of the program (Wilson et al. 2014).

5.4

Older Retired Males

The workplace can often be the sole source of social interaction for many men and entering retirement can have negative impacts for well-being and mental health, including loneliness and depression. When transitioning into retirement, older men transition from experts in their field to beginner retirees and can feel deprived of purpose and peers (Wilson et al. 2013a). However, Men’s Sheds have the potential to provide activities, community participation, and social inclusion (Wilson et al. 2010). The intergenerational mentoring program described by Wilson et al. (2013a) also reported how the older male mentors also benefitted from the program. For instance, the mentors not only gained a sense of connection with their mentees, through a values-led male connection, but also reported feeling like a valuable resource as they gave back to future generations (Wilson et al. 2013a). More recently, Mahoney et al. (2020) evaluated an intergenerational mentoring program where younger unemployed males with intellectual disability were supported by older male mentors. From baseline measures, the older male mentors reported significant improvements in their mental health and described a mutual learning and bond between themselves and the mentees (Mahoney et al. 2020).

5.5

Men with Disabilities

Evaluating the same mentoring program for the unemployed young males with intellectual disability, Wilson et al. (2020) reported the benefits for the mentees. From baseline, the mentees reported a significant increase in community-based quality of life and, although nonsignificant, a moderate effect on their self-reported loneliness (Wilson et al. 2020). In a different study on men with long-term disabilities who attended a Men’s Shed in outer urban Sydney, Hansji et al. (2015) described how the Men’s Shed provided an enabling community space that allowed

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these disabled men to get away from the home, be around other men, and engage in meaningful, male activities. The men described an equalizing and supportive male space, showcasing how Men’s Sheds can be utilized to counter social exclusion for vulnerable individuals in society (Hansji et al. 2015).

5.6

Connecting with Indigenous Males

In Australia, Men’s Sheds in rural and remote communities have seen to provide opportunities for learning and connection for Aboriginal men. Aboriginal men who were members of their local Men’s Shed discussed that Men’s Sheds were able to provide a space for mutual engagement and participation. The men identified the Sheds has a space to learn, strengthening relationships, tell stories together, and keep physically and mentally fit.

6

Men’s Shed for Health Promotion

Many Men’s Sheds also provide access to a range of health information and health promotion programs. Social identity theory suggests that, by identifying with a group and a shared identity, individuals are more likely to be influenced by their fellow members (Ford et al. 2014). Men’s Sheds, where mutual support is intrinsic, provide an ideal space to hold seminars, workshops, and health checks for a variety of health concerns (Wilson et al. 2015). Common health promotion activities at Men’s Sheds include mentoring, guest speakers, visits by health professionals for hearing, eyesight, and blood pressure checks (among others), and lifestyle activities such as physical activities, and providing healthy meals (Wilson et al. 2015). Given that men are reported to be less likely than women to engage in mainstream community-based health promotion activities, implementing such activities within Men’s Sheds can increase participation (Liddle et al. 2016; Wilson et al. 2015). In 2016, Misan et al. (2016) conducted a survey of common health concerns, knowledge, and strategies of members of rural South Australian Sheds. They found high rates of age-related chronic conditions, yet little knowledge about many health conditions, especially reproductive and mental health. When asked how the men might prefer to access health-related information, most wanted this access via handson involvement, rather than through attending seminars or undertaking internet searches (Misan et al. 2016). This approach has been proven successful, with several programs now embedded within Men’s Sheds (Liddle et al. 2016). One example has been a falls prevention program involving exercises to improve balance, education to identify falls risks, and strategies for recognizing intrinsic problems related to falls, such as medication side effects (Liddle et al. 2016). The men reported that having the falls prevention program facilitated in the Shed made it more accessible, enjoyable, and inclusive, where they valued both the convenience and peer support that came with having the program at their Shed (Liddle et al. 2016).

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Conclusion and Future Directions

This chapter has highlighted that social exclusion can be a double-edged sword for men and boys who have been marginalized. Marginalized males are at risk of pervasive social exclusion and poorer immediate and long-term outcomes. For some, these disruptions and challenging transitions lead to social exclusion, while for others, social exclusion makes those at risk even more vulnerable, as they lack the social support to deal with adversity. Given the disruptions to social inclusion, marginalized and/or subordinated masculinity that men can experience across the lifespan, it is important to have spaces that can facilitate and foster opportunities for social inclusion. However, given that men and boys experience social inclusion in male specific ways, there is a need for male-specific ways to counter isolation, loneliness, and social exclusion have developed that are very effective for many males. In Australia, and more recently internationally, Men’s Sheds provide a malespecific space where different males, with different lives and varying causes of disruption, can benefit from the social inclusiveness of “doing” with and alongside other males. Regardless of background or identity, Men’s Sheds can create a space that foster inclusion, shared experiences, and enable the expression of positive masculinity for all men across various sociodemographic groups and across the lifespan. To date, this has included groups such as older men in retirement, men with mental health challenges, young men with intellectual disability, Indigenous Australian men, and men who have been released from prison. Across all intersections, Men’s Sheds has been shown to be transformative for Australian men, by providing masculine inclusion and social connections. Specific programs, such as mentoring, have been used in Men’s Sheds spaces to provide tailoring intervention and support for such marginalized men and have grown to assist a wide variety of groups, such as older retired men, men with disabilities, and socially withdrawn teenage boys. As time and research has progressed, the evidence base surrounding the effectiveness and appropriateness of these spaces to support any and all men through participation and social networks has established Men’s Sheds as an ideal environment for male-specific social support. The research and gray literature present numerous exemplars of critical and transformational experiences offered by the inclusive nature of Men’s Sheds for marginalized and socially excluded males. Intersecting this knowledge with insights about masculinity, and males’ actionbased preferences for “doing,” offers a glimpse of how and why Men’s Sheds have evolved from the grassroots to the expanding international phenomena that can be observed today. Men’s Sheds demonstrate great promise in supporting social inclusion, enhancing community development, and promoting healthy lifestyles for men. There is burgeoning evidence that shows that men who are socially connected take better care of their own health, leading to healthier lifestyles and seeking help from health professionals. Men’s Sheds provides a blueprint for “how” this can be achieved by using contextual culturally gendered places and rituals that capture their men in male

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social spaces to spread such messages. This gendered example should be embraced by health promotion professionals as one part of a wider suite of global initiatives to reduce the gendered health disparity that males experience. Importantly, there is a need for more empirical research that investigates the health promotion potential of Men’s Sheds. Future research should explore the relationship between funding and the health and social benefits of various programs at Men’s Sheds. The studies need to have rigorous research designs, including in-depth qualitative studies and quantitative studies with bigger sample sizes and long-term outcomes data that examine the effectiveness of programs. There is also a need for Men’s sheds to have a greater social policy focus. Men’s Sheds appear to fulfill an important social function by filling a social gap, particularly in addressing the social isolation of the elderly, addressing the mental health needs of men, and engaging with long-term unemployed men. As such, Men’s Sheds appear to be an important community context for actualizing social policy, by initiating activities aimed at improving health literacy, for delivering preventative healthcare services, and facilitating social inclusion among men.

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Wilson, N. J., Cordier, R., & Whatley, L. W. (2013a). Older male mentors’ perceptions of a Men’s Shed intergenerational mentoring program. Australian Occupational Therapy Journal, 60(6), 416 426. https://doi.org/10.1111/1440 1630.12090. Wilson, N. J., Parmenter, T. R., Stancliffe, R. J., & Shuttleworth, R. P. (2013b). From diminished men to conditionally masculine: Sexuality and Australian men and boys with intellectual disability. Culture, Health & Sexuality, 15(6), 738 751. https://doi.org/10.1080/13691058. 2013.780262. Wilson, N. J., Cordier, R., & Wilkes Gillan, S. (2014). Men’s Sheds and mentoring programs: Supporting teenage boys’ connection with school. International Journal of Men's Health, 13(2), 92 100. https://doi.org/10.3149/jmh.1302.92. Wilson, N. J., Cordier, R., Doma, K., Misan, G., & Vaz, S. (2015). Men’s Sheds function and philosophy: Towards a framework for future research and men’s health promotion. Health Promotion Journal of Australia, 26(2), 133 141. https://doi.org/10.1071/HE14052. Wilson, N. J., Cordier, R., Cicarrelli, M., MacCallum, J., Milbourn, B., Vaz, S., Joosten A., Buchanan, A., McAuliffe, T. & Stancliffe, R. J. (2018). Intergenerational mentoring at Men’s Sheds: A feasibility study. Journal of Applied Research in Intellectual Disabilities, 31(1), e105 e117. https://doi.org/10.1111/jar.12338. Wilson, N. J., Jaques, H., Johnson, A., & Brotherton, M. L. (2017). From social exclusion to supported inclusion: Adults with intellectual disability discuss their lived experiences of a structured social group. Journal of Applied Research in Intellectual Disabilities, 30(5), 847 858. https://doi.org/10.1111/jar.12275. Wilson, N. J., Cordier, R., Parsons, R., Vaz, S., & Cicarrelli, M. (2019). An examination of health promotion and social inclusion activities: A cross sectional survey of Australian community Men’s Sheds. Health Promotion Journal of Australia, 30(3), 371 380. https://doi.org/10.1002/ hpja.217. Wilson, N. J., Cordier, R., Milbourn, B., Mahoney, N., Hoey, C., & Buchanan, A. (2020). Intergenerational mentoring for young adult males with intellectual disability: Intervention description and outcomes. Journal of Intellectual & Developmental Disability, 45(2), 99 109. https://doi.org/10.3109/13668250.2019.1582758.

Social Interaction and Social Inclusion in International Rural Health Research

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Lisa Bourke, Mujibul Anam, Zubaidah Mohamed Shaburdin, Olivia Mitchell, and Alan Crouch

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Is Social Inclusion? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Context of Rural Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Rural Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Framework to Understand Rural Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Case Studies of Research on Rural Inclusion/Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Learnings About Inclusion and Research to Increase Inclusion in Rural Areas . . . . . . . . . . . 8 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

There are particular attributes of rural communities that shape inclusion and exclusion in these settings. Social inclusion, or the opportunity for participation and access, together with its opposite, social exclusion, are central issues in rural contexts due to lower levels of income, education, and health outcomes as well as less access to health services. Adapting Wilkinson’s interactional perspective of rural communities, this chapter focuses on how social interactions, or the ways local people talk, undertake activities and organize their daily lives, play a central role in understanding inclusion and exclusion within rural communities. This perspective underpins three case studies of inclusion research, one investigating the inclusion of socially and culturally diverse consumers in local health services in regional Australia, one working with a rural Australian health service to L. Bourke (*) · M. Anam · Z. Mohamed Shaburdin · O. Mitchell Department of Rural Health, The University of Melbourne, Shepparton, VIC, Australia e mail: [email protected]; [email protected]; [email protected]; [email protected] A. Crouch Department of Rural Health, The University of Melbourne, Ballarat, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_43

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increase inclusion for local consumers, and a traditional healing approach to men’s sexual health in rural Bangladesh. Key lessons from these case studies include the importance of developing genuine relationships and partnerships, working with local systems and “ways of doing things,” progressing change slowly, and adopting pluralistic approaches to inclusion. Successful inclusion research was found to involve effective engagement, working with local networks, conducting long-term projects, and employing local researchers. The case studies highlight the need for more inclusive practices in rural health which can be assisted by research that challenges exclusionary interactions in rural communities. Keywords

Social inclusion · Social interaction · Rural communities · Rural research · Rural health · Case studies

1

Introduction

There are particular attributes of rural communities that shape inclusion and exclusion in rural settings that will be explored in this chapter. Social inclusion and exclusion manifest in various ways in rural towns. Social interaction and the way people talk, undertake activities, and organize their daily lives play a central role in understanding inclusion within rural communities (Bourke 2001a; Wilkinson 1991). Various forms of interaction continue to reproduce social relations and reinforce social patterns and hierarchies so that they become normalized (Bourke 2001b). Focusing on social interaction, this chapter explores how social inclusion/exclusion is shaped in rural communities across several countries. The authors acknowledge that social inclusion/exclusion occurs in urban areas and there too is shaped by social interaction; however, the focus here is on how small, isolated towns shape interaction, information, and actions in rural settings. To begin, a hypothetical example of social inclusion in a rural Australian community is provided that is based on previous research in rural Australia (see Box 1). Box 1 Example of Exclusion in a Rural Australian Community

Mike is a Year 12 student at the local secondary school in a town of 2000 people, located 480 km from a large city and 160 km from a regional centre. He lives on the edge of town with his parents who do not work, so there is little money. Mike’s older brother Peter moved to the regional centre after finishing Year 12, where he now works and studies part-time. Mike is good with computers and has a few friends in town who he connects with at school and online. Mike is tall, finds sports challenging and lacks confidence socially. Mike gained his drivers license early in the year and some days gets to drive (continued)

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Box 1 (continued)

the family car to school. He likes being one of only four students who drive to school. In the past few months, he has talked a few times to Melanie. Melanie is popular, very good at netball while also being more friendly than most of the popular students. Leaving school one warm day (35
C), Melanie talks to Mike. He knows she lives near him and it is a 30-min walk home for her, so he offers her a ride home. He watches her think about it and he adds “I can just drop you off on my way home.” He can see she is hot and tired so waits for her to accept. On the short drive, they talk about music and both enjoy the chat. He drives a few minutes to her house where she thanks him for the ride and gets out of the car. Mike proceeds home where his mother reminds him to check in at the local supermarket as she heard they were looking for a part-time staff. He has something to eat, changes, and sits for a while, then takes the car keys and drives into town. As he walks into the supermarket, one of the popular male students from school says to him: “I heard you got it on with Melanie.” Mike looks confused but says nothing. He approaches the owner and another male comes toward him, jabs him in the ribs, and says “stay away from Melanie.” Mike staggers, turns around, and keeps going. His confidence is now faltering but Mike approaches the owner and asks if he is looking for staff. The owner replies that “I am not sure you will fit in here. It is important that we all work together and get along.” He pauses, and then says “Are you a hard worker or more like your parents? I’ve heard you put some pressure on my niece (Melanie) and I don’t like that sort of thing. So not this time.” Returning home, Mike checked his social media to find a range of comments about Mike driving off with Melanie, pressuring her for sex and a range of other inaccurate gossip. There was nothing from Melanie, just others in town. He sent Melanie a private message apologizing for the rumors. He got nothing back and she ignored him the next day at school. Upset by all the comments at school, he avoided classmates by staying home, not going into town and spending more time online. Over the next week, he vowed to leave town at the end of the year, like his brother had done.

In this scenario, Mike and Melanie have an interaction that is then shaped by responses from other community members within established networks, norms, relationships, and reputations. Mike feels he has no way to challenge these rumors and that he is not believed. Melanie does not respond to protect Mike, thereby enabling rumors about Mike making sexual advances to escalate. The rumors and Mike’s parents’ reputation restrict his opportunity for employment, shape his withdrawal from community interactions, and strengthen his desire to leave town. The status of those who are popular, their willingness to believe information on social media, and the ability for gossip to circulate all highlight ways that rural communities can be exclusive. Melanie was popular, included and believed while Mike was less connected and doubted which led to further exclusion. This chapter explores

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these and other ideas of how rural communities can be inclusive and exclusive and how researchers have worked with community organizations to increase inclusion in health. The chapter now moves to a discussion of the concept of social inclusion, noting at the outset that there is no agreed perspective of this concept in the social sciences (O’Reilly 2005). Following, an overview of rural communities is provided identifying factors that shape our understanding of social inclusion within, and research with, rural communities. Ideas of social inclusion are integrated with Wilkinson’s (1991) theory of rural communities to provide a framework for understanding inclusion/exclusion in rural areas. An example of this perspective is presented through the impacts of responses to the Coronavirus pandemic in rural settings. This is then followed with three case studies of research on inclusion in rural settings in Australia and Bangladesh that highlight how inclusion/exclusion differs in rural communities. The three case studies also identify how research was undertaken in rural settings given the different patterns of interaction identified by Wilkinson (1991). From these case studies, key principles for increasing social inclusion in rural settings as well as principles for undertaking rural research on inclusion are provided.

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What Is Social Inclusion?

The chapter begins by considering meanings of the concept of social inclusion. Social inclusion is an important concept for understanding many social problems (O’Reilly 2005). The concept of social inclusion helps us to understand the relationships between rich and poor in a society, the relationships between different genders, the relationships between different professions, and the relationships between people of different cultures, languages, castes, ethnicities, and religions. Many definitions of social inclusion are similar to the United Nations’ (2016, p. 17) definition where social inclusion is a multidimensional “process of improving the terms of participation in society.” For some, this process is about individual action while for others it includes structural, institutional, or systems approaches to ensure participation. Clearly, inclusion needs to occur at all these levels. Because it is a complex term, measuring social inclusion is difficult and there is no standard measure used globally (United Nations 2016). Other researchers have focused on social exclusion, or a lack of social inclusion, suggesting exclusion is more visible and easier to measure. Popay et al. (2008, p. 2) define exclusion to comprise: . . .dynamic, multi dimensional processes driven by unequal power relationships interacting across four main dimensions economic, political, social and cultural and at different levels including individual, household, group, community, country and global levels.

Social exclusion is often prevalent with social problems, such as unemployment, low income, poor health, disability, and family breakdown (United Nations 2016). Thus, power, social stratification, and social problems lead to exclusion of particular

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groups of society (Popay et al. 2008). Exclusion can be based on ethnicity, gender, or a range of power inequities. For example, social exclusion can be based on historical ethnic conflicts or issues relating to migration and new settlers. Religious differences or subdivisions within the same religion can add to these social differences, such as Hindus interacting differently with various sections of the Hindu religion based on the caste system in Bangladesh (Sultana and Subedi 2016). Gender identity also acts as an important influencer in terms of social exclusion. In Bangladesh, the participation of rural women in social decision-making processes tends to be much less than that of men, limiting women’s social connection (Arens and Beurden 1977; White 1992). In Australia, social organizations and activities embedded with particular masculinities (e.g., sporting clubs) can create cultures promoting drinking, less help-seeking behaviors by men as well as particular privileges (see Bourke 2001a). Furthermore, social exclusion can be shaped by those in positions of power, such as health professionals, teachers, and government officials. The behaviors of these professionals can promote engagement, support, and constructive environments, or the reverse, and these have implications for health and education outcomes in rural communities as well as social inclusion/exclusion more generally (McIntosh et al. 2019; Malatzky et al. 2018). Thus, there is a relationship between social interaction and social inclusion (Wilkinson 1991). Generally, if social interaction is difficult, its effect can be seen in social exclusion. For example, after a few individuals spread rumors about Mike’s interaction with Melanie, Mike withdrew from social settings and was not offered employment. The behavior of a few led to increased social isolation for Mike with no consequence (and perhaps increased status) for those spreading the rumors. His exclusion was active, through comments on social media and ridicule by peers, as well as passive, where he was ignored by Melanie and she failed to correct the incorrect gossip. In this particular scenario, the experience of being excluded was felt by Mike personally, and this can be the case whether or not the exclusion process is subtle or not intended. The outcomes of social exclusion can impact mental health, self-confidence, participation in other areas of society, or even suicide (Bourke 2001a; United Nations 2016). While rural communities are often conceptualized as homogenous and simple, they are complex social processes with stratification among residents based on gender, class, community participation, or religious divisions (Lockie and Bourke 2001; Arens and Beurden 1977; Murdoch and Pratt 1993; White 1992). In addition, various social problems are evident in rural communities (Bourke 2001a; Jansen 1983), identifying the importance of creating avenues for participation and deconstructing processes that exclude individuals from everyday life in rural communities. To do so, discussion now turns to attributes of rural communities relevant to social inclusion.

3

The Context of Rural Communities

This chapter aims for readers to increase their understanding of rural areas and how to work in, or conduct research with, rural communities. To begin, we highlight some broad structural issues that impact on social inclusion and economic

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participation in rural communities, particularly relating to health. Specifically, there are three general trends in rurality related to inclusion and exclusion outlined here. 1. Rural and remote populations of Australia, and other countries, tend to have lower incomes, lower levels of education, and poorer health (AIHW 2019; Smith et al. 2008). This suggests that rural and remote residents are generally disadvantaged in terms of participation in employment, health, and education. 2. For the reasons noted in point 1, rural and remote areas are often conceptualized as “less than” urban, a financial burden, culturally homogeneous (predominantly White) or as unprogressive and “backwards” (Heley and Jones 2012; Lockie and Bourke 2001; Malatzky and Bourke 2016; Pritchard and McManus 2000). These claims are challenged on the basis that rural and remote Australia provides a range of national exports from farming, mining, fisheries, manufacturing, and tourism that contributes significantly to the national economy (Lockie and Bourke 2001). In addition, rural and remote Australia is culturally diverse as it is home to two-thirds of Australia’s Aboriginal and Torres Strait Islander people as well as many immigrants and new arrivals (Lockie and Bourke 2001; Pritchard and McManus 2000). Through globalization, internet access, and mobility, rural and remote people are connected to global news, information, and networks, and also participate socially, economically, politically, and culturally in regional, national, and global systems (Islam and Hoq 2017; Lockie and Bourke 2001; Pritchard and McManus 2000). Thus, rural residents are not backwards or less progressive. Further, there are strengths to rural communities in terms of being able to harness action across the community, including the ability to use social networks to provide informal care and support. Despite these strengths, we acknowledge that in Australia and elsewhere, rural and remote areas are often considered the “poor cousin” to urban regions (Malatzky and Bourke 2016). 3. In rural areas, the lack of health services can have particular impacts for some people. Rural residents have less access to services, less choice of services, fewer specialist services locally, and have been found to use services less often (BHWR 2008, 2012; Pavel et al. 2016). This is of particular concern for specific groups of rural and remote residents with poorer health outcomes, such as Aboriginal and Torres Strait Islander residents; refugee and asylum seeker residents; residents who are gay, lesbian, bisexual, transgender, intersex, queer, or non-gender binary (GLBTIQ+); and residents with low income, low levels of English literacy, or with disability. These residents often use health services less frequently, and if they feel uncomfortable, judged, or intimidated by a service, there are limited choices for other services. If a service is not “culturally safe” for Aboriginal and Torres Strait Islander people, they do not use the service (Belfrage 2007). This highlights the need for inclusion in rural health care. The authors have undertaken work with rural health services to increase the inclusion of health services for marginalized and disadvantaged community members, which will be discussed later in this chapter. Together these suggest that rural residents of Australia and other countries are disadvantaged and have poorer socioeconomic and health outcomes while rural

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regions are viewed as inferior to their urban counterparts. While there are rural and urban differences, power relations are more complex. Some rural residents are more excluded than others and, importantly, people, organizations, and institutions are not either completely inclusive or exclusive. Social situations, rural communities, and health services can be both inclusive and exclusive simultaneously. They may include some people but not others, they may vary based on particular behaviors and circumstances, and they may change over time. A clear example of this is the recent COVID-19 pandemic. The ways in which restrictions to our homes led to increased exclusion for older people, those with less access to the Internet and people from lower socioeconomic backgrounds is outlined in Box 2. The example demonstrates how contexts and circumstances impact on inclusion/exclusion and how they impact on people in different ways; those with less money, less social standing, less power, and more isolation were impacted more than middle-class, urban residents, and this is not uncommon.

Box 2 Inclusion and Exclusion During Social Isolation Measures Responding to COVID-19

In response to pandemic Coronavirus-19, a range of measures were implemented as public policy across most countries, including staying home, physical distancing, and using technology for social connection, use of services, and societal function. As a result, people worked at home, studied from home, ordered products for delivery, and consulted with health professionals and others through online media. Health professionals developed telehealth consultations and many businesses adapted to provide delivery, take-away food, and online services. The world changed very quickly. For some, staying in a comfortable home with good Internet connection in a town or city provided access to goods and services, a living environment that was sustainable, and the ability to continue to earn an income. For others, it created severe social isolation. Elderly residents living alone who were not Internet-literate struggled to access services and maintain social connection. Remote residents living where Internet access is limited were also restricted in access to essential services, information, and online support. Families with low incomes struggled to have the electronic equipment necessary to support online engagement, schooling, and access to services. It became clear that “lockdown” impacted people differently and those with low incomes, homeless people, those with less access to the Internet, and those more socially isolated before the pandemic were further disadvantaged by the restrictions introduced in response to COVID-19. In regions in Bangladesh, isolation policies severely restricted access to food and health care (despite being essential services) and forced people to spend long hours in substandard housing. Many poor people in rural areas did not have food and could not afford to buy food. Most low income residents in rural Bangladesh were daily wage earners and “lockdown” prevented daily (continued)

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Box 2 (continued)

earning. These people had to rely on government relief or other help which was insufficient and not available to everyone. As a result, poor people in rural areas were in dire need of food and lacking in effective healthcare. There were no options for telehealth due to technological limitations. As a result, “lockdown” increased human suffering and most essential health services were shut down. This restricted access to services for pregnant women, cancer patients, and elderly people, among others. During the peak of COVID-19, testing facilities were only available in the major cities, making it almost impossible for rural residents to be tested if they had COVID-19 symptoms. For many of those living in poor neighborhoods, often referred to as slums, this meant being confined to cramped, single-room dwellings for the period of “lockdown.” The lack of both food and access to health care in conjunction with the experience of living in cramped conditions has impacted the poorer residents of Bangladesh more than the wealthier classes. Wealthier residents were able to maintain employment, enabling income which led to access to food, health care, and other services. Therefore, the “lockdown” reinforced class differences where the poorest suffered most.

4

Rural Communities

In addition to these broader rural-urban trends, there are differences between rural communities (Bourke et al. 2012; Humphreys 2005; Terry et al. 2017). Before we consider these differences, it is important to ask what is a community? Communities, particularly rural communities, are often thought of nostalgically as close-knit groups or “an ideal type of an old form of social life” (Wilkinson 1991, p. 7). However, rural communities are complex, dynamic, and not necessarily harmonious (Lockie and Bourke 2001; Murdoch and Pratt 1993; Panelli et al. 2009). Communities are sometimes described as systems or groups of people or people with common identities (see Bourke 2001b). This chapter refers to “communities of place” in specific rural regions that are tied to a particular geography. Residents of communities may not share common identities and the community of place may not be systematically organized. Rather, communities of place refer to what goes on among residents in that place. There are many theories of community (Bourke 2001b). Wilkinson (1991) is a community scholar who focuses on interaction as the basis for community. He describes rural communities as formed by three elements (Wilkinson 1972, 1979, 1991). 1. The first is the locality or the geographical setting of the community, although the locality does not have rigid boundaries. Wilkinson (1991, p. 6) argues that “people still live together in places, however fluid might be the boundaries of those places.”

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2. The second element is the local society, which consists of the people and organization of the local population in that locality. This is the ways residents organize themselves in their daily lives, including local economic, political, educational, and health sectors, as well as local groups, networks, and organizations. The local society could be disorganized, culturally homogeneous or heterogeneous, functional or dysfunctional, well serviced, close-knit, or otherwise (Wilkinson 1991). 3. The third element is the community field. Communities comprise “social fields” or processes of social interactions surrounding its organization (Wilkinson 1991). The social field of health in a rural community is more than one specific organization and includes the interactions of community members about, by, and for health in or attached to that community, such as the hospital, GPs, community health, public health plan, and other health services or programs. The community field is the interaction of all the social fields, including health, education, sport, local government, and so on. The interactions forming the community field are not special interest but focused on the community as a whole. For example, the community field is the interaction between social fields that develops an initiative to support teenagers seeking health care within the school through a partnership between schools, parents, local doctors, a youth service, a sporting group, and a counsellor as well as non-local sexual health and mental health services providing care remotely that may be funded by a local business group. The field continually redefines these interactions, acting as a dynamic process rather than a whole and balanced system (Wilkinson 1972, 1991). The basis for community, then, is not just a group of people residing in a specific rural place, but the interactions between these residents that lead to action, change, reaction, and resistance. From Wilkinson’s perspective, the social norms of inclusion within specific social fields and in the community field shape inclusion in community actions (Wilkinson 1991). And these patterns of interaction differ for rural communities — they are not always the same (Humphreys 2005; Terry et al. 2017; Wilkinson 1991). The three elements of rural communities, locality, local society, and community field, are the basis of Wilkinson’s interactional perspective of community used throughout this chapter (see Fig. 1). Wilkinson’s (1991) approach has also been used in the USA and other countries in a range of rural settings, including community development, economic development, natural resource management, disaster management, health, leadership, and international development (see Brennan and Luloff 2007; Bridger et al. 2011; Taylor et al. 2008). Here we use this approach to understand social inclusion/exclusion.

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Framework to Understand Rural Inclusion

To understand inclusion and exclusion in rural communities, Wilkinson’s (1991) interactional framework is adopted. In his approach, Wilkinson identifies patterns of interaction as the key difference between rural and urban communities. He argues

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Fig. 1 Interactional Rural Community adopted from Wilkinson (1991).

1

Locality

Geographical setting of the community.

3 Social Fields Fields include: Health, Education, Sport, Local Government, community service, etc.

Community field of actions & interactions that are in/exclusive

2

Local Society The people and organisation of the local population in the locality.

that while rural and urban communities have similar proportions of strong ties, or close personal relationships, rural residents have proportionally fewer weak ties (acquaintances) than urban residents. Because rural communities have smaller populations in more isolated settings, local residents are more likely to know each other, resulting in a lack of “weak” social ties (Wilkinson 1991). Drawing on the work of Granovetter (1973), both strong and weak social ties enable a balance for individuals to be both connected and supported as well as maintain their independence, autonomy, and identity. In rural communities, residents are known to others, sometimes personally or through family, friends, social connection, or professional networks. This creates a lack of anonymity for residents of rural communities as their actions, relationships, and social lives are known to others. Lack of anonymity results in social pressure to conform, for radical behavior will be noticed, remembered, and associated with a specific individual. Rather than being one of the crowd, a person is, or is not, one of the “locals” (see Bourke 2001a; Wilkinson 1991). For example, in the earlier scenario (Box 1), a potential employer was able to connect Mike to the reputation of his parents as well as to recent gossip on social media. Mike became known for pressuring Melanie based on rumor. Similarly, rural residents are aware of the consequences of engaging in conflict; residents disagreeing with popular opinion may be stigmatized or marginalized and, as a result, their local social networks become disrupted. At the same time, this lack of anonymity can lead to support of local businesses, familiarity, and social support in times of crisis. When there is a death in a rural community, people often provide strong support for the family. Additionally, stories abound about rural residents who mow the lawn for and check up on elderly neighbors. It is what we both love and hate about small towns – everyone knows everybody! (Bourke 2001a). The intensity and intimacy of these close ties means that when ruptured, the impact is greater (Wilkinson 1984).

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Interaction patterns are also influenced by the multiple roles held by rural residents. As a result of a small population (Wilkinson 1991), many residents have more than one role, as defined by their occupation, social standing, or community participation. For example, a business owner may also be the mayor while the school principal may also be president of a sports club and friends with your parents. Residents are very aware of the multiple roles held by individuals and never forget that when talking to their neighbor, they are also talking to the newspaper editor. As a result, interactions may be more guarded, confidentiality more difficult to secure, and opportunities for anonymity less frequent. This is because information is quickly disseminated, often through informal networks (Bourke 2001a). As a result, this “lack of weak ties” alters communication (Wilkinson 1991). For example, rural residents may not disclose particular identities (bisexual), health conditions (mental illness or COVID-19 positive), previous experiences in other places, or personal information (relationship problems). It also means that networks, relationships, and interactions are not confined to a single setting — rumors cross networks throughout the community because the same individuals share multiple networks, activities, and social groups (Bourke 2001a). For example, what happened to Mike after school impacted his relationships at school, his opportunity for employment, and his reputation in town. Such issues for young people like Mike are more likely to become known to parents, teachers, and other adults in the town, including the supermarket owner. Similarly, if people are excluded in one setting, they are more likely to be excluded in other settings in the same community, as the same exclusionary processes continue across multiple settings and networks. On the other hand, an unpopular teenager at school can increase their inclusion following a star performance on the sporting field the previous weekend. Thus, social interaction has repercussions for social inclusion and exclusion. Local residents learn the norms of communication, what is acceptable for inclusion and what is ridiculed, questioned, or leads to exclusion (Arens and Beurden 1977; White 1992). Over time, these norms become common, expected, and difficult to change. They influence the ways in which communities act and respond to change. These norms also vary between communities and it cannot be assumed that rural places are similar. However, these norms of communication mean that many rural residents avoid conflict, keep particular opinions unvoiced, and may hide identities and behaviors that would be deemed unacceptable in their specific community. Therefore, as Wilkinson (1991) has highlighted, rurality, particularly small numbers of people and their isolation, alters patterns of interaction locally and this has particular consequences for inclusion in rural communities. Interactional perspectives of inclusion and exclusion in rural communities recognize social inclusion as dynamic. People move through various networks and interactions change over time. The teasing of Mike will pass (Box 1), enabling his inclusion in other ways, but the local response to him driving Melanie home has left Mike with a motivation to leave the community that may be long-term. Not only do exclusionary behaviors change, they are not consistent for everyone and negotiated based on individual actions and relationships. For example, while Aboriginal residents in a rural community in southeast Australia may generally not be included, a

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sporting champion who is Aboriginal may be included in more social networks. Further, while new arrivals may generally not be included in the same community, an immigrant who is a doctor may be accepted. The patterns of inclusion and exclusion are not always clear and consistent; there are many attributes that lead to inclusion/ exclusion, including social status (e.g., being the local mayor), being an employer, contributing to community life and relationships with others. Thus, the power relations in any rural community are complex, dynamic, and underpin inclusion, exclusion, and patterns of interaction in rural communities (Heley and Jones 2012; Malatzky et al. 2018; Murdoch and Pratt 1993). In recent decades, rural residents who are excluded have non-local avenues to seeking connection, such as online groups, activities, information, and interaction. These provide supports to rural residents who may otherwise not have these supports. However, “lockdowns” from the pandemic have highlighted the impact of face-to-face interactions for both inclusion and exclusion (see Box 2). Exclusion within face-to-face settings (e.g., bullying at school) can be stressful, isolating, and disempowering, leading to psychological strain, isolation, and reactionary behaviors (Paradies 2006; Paradies et al. 2008). To not be heard, acknowledged, valued, or respected is a negative experience and undermines the aims, values, and policies of all government, health, education, and other institutions (United Nations 2016). In rural areas, where social networks are limited and connected, this can be particularly difficult. This chapter now presents some case studies to highlight inclusion/exclusion in rural health settings and work undertaken to address this. Addressing exclusion requires institutions, communities, groups, and individuals to challenge sexism, racism, white privilege, and other power relations that work to exclude some and not others (Durey and Thompson 2012; Malatzky et al. 2018). This is a multi-layered task that requires new forms of interactions. In health, this requires changes to relationships (e.g., between nurse and patient) as well as local actions to change health service policies, ways of providing services, community engagement strategies, and attitudes among staff (Malatzky et al. 2018).

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Case Studies of Research on Rural Inclusion/Exclusion

The chapter now turns from discussions highlighting the presence of inclusion and exclusion in rural areas to specific examples of research aimed at understanding and challenging exclusion in rural areas. The three case studies presented here provide examples of exclusion in rural health settings and attempts to increase inclusion in health practices through research. These are summaries of larger projects, presented here to highlight key aspects about inclusion work in rural areas. Key lessons from these case studies are presented after their description. Case Study 1 Research with Rural Consumers in Southeast Australia The first case study is an overview of research with residents that occupy non-dominant identities who have historically been marginalized by health systems.

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We undertook research to gain the perspectives of rural health consumers about their access to and use of health services with the goal of utilizing the findings to inform change within local health services. Inclusion and exclusion cannot be assumed based on residents’ identities and/or cultural and social positions and it is important to be guided by experiences of inclusion/exclusion rather than make assumptions. To gain their perspectives, researchers worked with local networks in a rural community. This was achieved by researchers developing relationships with these groups through attending community events and group meetings, getting to know leaders of particular groups, working with services who provide support to particular groups, and taking time to develop relationships with members of these groups. Through interactions based on listening, connecting, and forming relationships, researchers established trust with particular groups. From these relationships, researchers gained access to groups of consumers and invited members of these groups to participate in individual interviews or focus groups about inclusion. Over a period of 18 months, researchers visited a range of community settings, including support groups, cultural groups, and events, Men’s Sheds (places for men to connect while building items for themselves and community members), Neighborhood Houses (hubs in particular neighborhoods providing services, meeting spaces and places for connection), and public places to develop relationships with health consumers and ask for participation in the research. Once we gained permission, interviews and focus groups were conducted in spaces and places comfortable and convenient for consumers. A $30 gift card was also provided to consumers to thank them for their time. This gesture was appreciated by some as acknowledgement of their time and that university researchers with perceived status and income wanted contributions from those with less status. For others, the gift card seemed less important for participation. Through interactions with these networks, we also employed four community researchers who assisted in accessing particular consumers and/or conducting interviews. Community researchers were provided with training and support in recruiting participants, conducting interviews, and collecting data ethically. Some of the community researchers recruited participants whom we interviewed, as they felt uncomfortable seeking confidential information within their own networks. Other community researchers felt that they were better placed to conduct interviews because they were trusted, spoke the same language, and/or had more understanding of the perspectives of consumers. It was the decision of the participant along with the community researcher as to who conducted the interview, and this varied. Using this approach, 86 interviews and 11 focus groups were conducted with community members who identified as Aboriginal, young, newly arrived refugees, culturally diverse, gender/sexually diverse, and/or living with disability/ies in a rural center. Many participants identified with more than one of these groups/identities and the data highlighted the complexity of cultural and social categorization. Further, cultural and social identities are fluid and move, overlap, and obscure according to context and time (see Evans 2019); for example, some interviewees spoke of holding different identities in the past.

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The interviews and focus groups identified a range of stories, experiences, and responses about accessing and using health services. These conversations highlight how interactions can shape inclusion and have long-term impacts for accessing health care by rural residents. While the responses were broad, some common issues emerged that were focused on interaction and inclusion. 1. The first was assumptions made by health services and health professionals about the consumer. For example, many stereotypes were said to be drawn on by health professionals when talking to these consumers, including assumptions about employment, income, sexuality, parenting, and so forth. These assumptions were often negative, such as assuming people had a health care card, were heterosexual, spoke English, had low incomes, and were not familiar with health services. Further, such assumptions tended to reinforce existing community norms and social stratification established through the community field. While some consumers challenged these assumptions, others felt unable to safely articulate their identity/ies. 2. Multiple barriers to accessing care were identified among these consumers, including: high out-of-pocket expenses and/or uncertainty of cost; not knowing how to navigate the health system; language barriers; feeling unwelcomed; lack of and mis-communication between different health professionals that lead to confusion for consumers; clinicians not listening to the needs of consumers; and health professionals using medical language that excluded consumers. The need for better communication between services and their community and between health professionals and their patients/clients was stated. Consumers who are not readily included in the community field are less likely to be included in “local knowledge” distributed through local networks. 3. Consumers identified discomfort, and at times feeling nervous, when seeking care. This was described as more uncomfortable when confronted with overt or passive exclusionary practices, such as rushing, not listening, and assuming to know the health concern. Health consultations were reported to be improved through positive social interactions with health professionals. Positive relationships and interactions were specified as being respectful, treated with kindness and patience, being listened to, and using simple everyday language to communicate. 4. Previous or historical negative experiences in health settings led some consumers to avoid seeking health care until an urgent need arose. This highlighted how services can have an impact on the long-term health care of an individual and may potentially increase usage of and burden to emergency services. This suggests inclusion is developed over time with positive relationships and experiences. 5. Lastly, the discussions with consumers made clear that patient centered care looks different for every individual. While consumers may belong to particular groups, as identified by the lens of the health system, care should be tailored to individual needs focusing on empowering consumers’ voices and choices. Quality communication with individual consumers was key to developing this.

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Afterwards, analyzed data were compiled into a report which was reviewed by the community researchers and some participants. This enabled a more authentic representation of the voices of consumers and more confidence by consumers that researcher interpretation of their conversations reflected the intentions of community participants. The final report was distributed to participants, health services, and the broader public, so that health services can use the information and consumerparticipants are aware of the impact of their contributions. The report also included recommendations for health services to broaden inclusive policies and practices within, and therefore access to, their service. Ongoing research and partnerships with these services can assist the service to make these changes. Building processes for interactions between health services and community/health consumer groups strengthens the ability for services to respond to local health needs and change usual practices that may lead to exclusion. Thus, engaging the entire community in the community field is essential for inclusion. Case Study 2 Action Research with a Small Rural Hospital in Southeast Australia The second case study is an action research project with a small, rural hospital, where staff wanted to improve the accessibility of its services to culturally and socially diverse populations and groups within its catchment. Over 3 years, a range of inclusion activities were undertaken focused on service-wide development of more inclusive policies as well as staff training and reflection to improve inclusive practices. This example highlights the importance of trusting relationships between researchers and health service staff, so that exclusive practices could be made visible and challenged in order to bring about change. At the outset, the researchers had discussions with leaders of the health service to identify inclusion/exclusion issues within the service and the desired change. This process was a critical first step in building trust, developing a plan for how the research would be undertaken within the service, and identifying the expectations of what could and would be achieved. Following the development of a formal research partnership, the researchers joined several committees in the health service which worked in diverse ways to progress inclusion, including facilitating staff training on Aboriginal cultural competence, reviewing policies, revising forms given to clients, and improving the entrance and other service environments. A series of focus groups were then conducted with staff from various areas and levels across the health service. It was found that a number of staff within the organization lacked an understanding of why inclusion was important, were unaware of the ways the health service practiced exclusion, and were unsure of what to change. While most staff genuinely expressed a desire to treat all consumers with respect, dignity, and provide quality care, this was often contrasted with an unwillingness to consider that exclusion was still occurring for some groups of people and the practices of staff could be exclusive. For example, it was believed by many staff that simply “treating everyone the same” was being inclusive. Among a few staff, more dismissive excuses for not

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being inclusive emerged, such as being “too busy” to focus on culturally inclusive practice or that it was not required because “there are not many Aboriginal families here.” In response to these findings, the researchers developed relationships with staff and then led multiple, repeated discussion groups with teams across the health service to continue to raise issues of inclusion, encourage staff to discuss and reflect on inclusive and exclusive practices, and consider how these practices might be changed. Interviews were also conducted with local community members and this information was collated and provided anonymously to the service so they could address issues experienced by users of the service. From this extensive process over 3 years, a range of issues emerged, most notably the difficulty of challenging exclusive practices across an organization. What did contribute to increasing inclusion was: 1. A long-term approach toward inclusion and organizational change 2. Strong leadership that persisted with change when resistance to change was encountered 3. Developing relationships between researchers and staff so issues and practices could be discussed and challenged with a known researcher 4. Continuing conversations about inclusion 5. A commitment to engagement and consultation with the local community Continued interactions through known networks were used to challenge staff about issues raised by local residents. In this way, researchers were the conduit for connecting community perspectives with health practices. Connecting health professionals with the needs of the local society assists to create a community field that is more connected and inclusive of voices on the margins. Case Study 3 Research in Bangladesh on Rural Men’s Sexual Health The third case study provides an overview of research on men’s sexual health in Bangladesh. It highlights how sex and sexuality-related understandings influence service seeking as well as how local networks can contribute to inclusive sexual health support in a rural context. Like many countries, availability and accessibility of health services are key challenges in rural areas of Bangladesh. According to the World Bank (2020a), there were only 0.5 physicians and 0.3 nurses per 1000 population in Bangladesh compared to 3.6 physicians and 12.7 nurses in Australia and 1.5 physicians and 3.4 nurses per 1000 averaged across the globe. Services and facilities in rural areas are less resourced than in urban areas, and professionals are less inclined to stay in rural areas (Darkwa et al. 2015). While professionals prefer urban practice, 63% of the Bangladeshi population live in rural areas (World Bank 2020b). Further, privacy risks and embarrassment of discussing one’s own sexual problems also discouraged men from seeking advice from biomedical practitioners. Therefore, rural populations rely on informal health services which cross social fields to blend traditional healing systems, village doctors, and drug shop attendants (BHWR 2008, 2012). The estimated workforce of this sector includes 50,000 traditional medicine practitioners, 90,000 homeopathic practitioners, 170,000

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drug-shop attendants (not trained pharmacists), and 185,000 village doctors (not bio-medically trained) (Ahmed et al. 2013). However, formal sexual health care is limited in Bangladesh; sexual health clinics are concentrated in the city areas (Rashid et al. 2012; Hawkes 1998) and not affordable and accessible for many low income, rural men (Pavel et al. 2016). In one region of rural Bangladesh, a study was undertaken to explore sexual health services available to and utilized by rural men. In this region, there were no doctors or health services found to provide sexual health support. Due to the prevailing understandings about sexuality among people living in the area, there was a tendency for men not to seek the advice of a doctor for sexual health problems. Men tended to consider sexual problems as a weakness of their masculine position and avoided discussing these issues in any way. If a man’s sexual problem was known by others, it brought stigma and shame and so men were not open about their sexual health. However, there was a traditional form of sexual health support in the region which fitted with the social context and local culture. Men could seek support from traditional healers, called Majmawala, without losing their social position. Majmawalas conduct their sessions publicly in rural markets, discussing various aspects of men’s sexual health. The clients of the Majma street healing do not need to disclose their problem to Majmawalas when purchasing medicine. Rather, the whole healing process is a group focused interaction. Within these encounters, dozens of men crowded around a Majmawala, listening intently to their explanations of male sexual dysfunction as well as the ensuing advice about the remedies. These discussions were daily occurrences in rural marketplaces. Using a group approach in a safe community space, the healing process creates a comfortable zone for men to understand and normalize sexual health care. In this way, the audience of the Majma healing session is not necessarily perceived to be men with sexual problems — they may be men who are curious about the topic. Thus, the potential for the audience to be associated with the stigma of sexual health concerns is mitigated. In this ethnographic research study, people were observed to interact with and seek services at Majmawala’s Majma sessions. Majmawalas would begin the session by expressing their thoughts about sexual health. The presentation of their speech was charismatic so that in a short time a crowd would gather to listen. Majmawala narrate their sexual health advice while making herbal medicines. In Majma’s narratives, the types and causes of sexual weakness ranged from sex education to economic crisis. As respectful listening was an important part of the interaction, no hesitation was noticed in the audience. Many audience members would buy herbal medicine from the Majma while discussing sexual health issues. As part of our fieldwork, 20 audience members were interviewed. These interviews found that almost everyone considered the Majma an important place for exchanging sexual information. They described listening to and interacting with the Majma and other men in attendance as recreational and normal. Many of the interviewees identified they had sexual health problems and did not consult any biomedical professional. The informal interactions at Majmawala’s Majma sessions overcame the challenge of not being able to seek sexual health advice in rural settings from biomedical professionals.

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Participatory observations revealed a social acceptance of the Majmawalas. They were considered part of the tradition and men would join the Majma healing session without any hesitation. Working within local cultures, networks, and social fields achieved better health outcomes, more inclusive practice, and greater utilization of services than trying to develop new and formal health services. Working across social fields (e.g., sexual health in market place discussions of economy, health, and so on) enables more inclusive interactions from across the community field than within a particular social field (e.g., health care). The message here is that a health problem can demand different interpretations based on localized cultural understandings. Furthermore, health care can connect social fields, such as traditional and Western health knowledge, informal and formal health systems, local business settings, and men from all parts of the community coming together in a rural community to meet a health need. Together, these case studies highlight the difficulties for particular rural people to access health services safely. While there are common rural issues of service availability, distance, and access, the most important issues for residents on the margins of the community are inclusion, exclusion, and appropriateness of the services for local context and culture. This suggests that if rural services are inclusive, they must be designed for the locality, local population, and connect multiple social fields — inclusive health care derives from interaction of various social fields or emergence of the community field.

7

Learnings About Inclusion and Research to Increase Inclusion in Rural Areas

The three research case studies that aim to increase inclusion in rural settings highlight some key learnings about inclusion in rural areas. Drawing on Wilkinson’s (1991) approach, the focus of this chapter has been on interaction, communication, and inclusion. Such an approach prioritizes issues of safety in one’s identity, acknowledging the presence of stigma, and working with local networks. This work also privileges the voices of the marginalized, as it is their perspectives that must be embedded in change. Wilkinson (1991) highlights how the lack of weak ties alters face-to-face interaction and encourages us to be actively inclusive; to challenge local exclusive practices; to avoid gossip, stereotypes, and exclusionary talk; and to ensure diversity within the practices of rural communities. From these case studies, this chapter identifies key principles and practices to increasing inclusion in rural communities. 1. Relationships are essential in inclusion work. Developing genuine relationships yields trust, partnerships, and safety to initiate a long-term approach to social inclusion that can be ultimately sustained through influence on social norms. In the health setting, relationships between consumers, between staff, and most importantly between practitioners and consumers provide understanding of inclusion/exclusion and where change is needed.

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2. Partnering with local systems is important. Rather than setting up new structures, working with existing committees, organizations, local groups, and networks is important for connecting with people, developing relationships, and working with them in their usual forums. Identifying how minority groups interact and support each other can be strengthened more easily than creating new inclusive strategies. 3. Respecting local ways of doing things is also important, even if you do not agree with them. Understanding local ways of doing things provides a context to undertake inclusion work safely and develop health care in locally appropriate ways. 4. Gently challenging current thinking, rather than attempting radical change, encourages people to engage with an inclusion process rather than reject the change outright. While at times this may feel frustratingly slow, creating change at an acceptable pace is important for sustained “buy-in” and momentum of inclusion practices. This enables strong ties to be maintained and challenged collectively rather than rupturing strong ties which can have significant impact (see Wilkinson 1991). 5. Utilizing pluralistic approaches can increase inclusion. Enabling different ways of understanding health, co-designing health services, and working with different cultural approaches leads to greater inclusion, utilization, and appropriateness of health care. There are also key learnings about inclusion research from these case studies. 1. Effective engagement between the researchers and health services, health service staff and the community is a critical component to developing trusting, working relationships. Through an effective engagement process, the researchers were able to better uncover areas of misunderstanding, challenge exclusive thinking and practice, and provide education where appropriate to support the process of change. 2. Researchers worked within existing local networks in Australia and Bangladesh, and this was important to gain the trust and perspectives of consumers. In Case Study 1, researchers developed relationships with groups within rural communities to foster trust, collaboration, and honesty. Working within teams at the hospital in Case Study 2, researchers provided interactive education based on reflection about inclusion rather than criticizing staff practices. It is important for researchers to spend time with people, to get to know them, and to attend local events and gatherings, rather than gathering data quickly and leaving. Furthermore, developing these relationships assisted researchers to understand the context for these groups, leading to better interpretation of their perspectives. 3. Researchers addressed inclusion/exclusion over time and allowed time for change. Many research projects are short-term but allowing for long-term engagement, education, and change was found to be important. 4. Employment of local researchers was also important. In the consumer study, this enabled trust with specific consumer groups and for the research to be undertaken in places, languages, and ways comfortable for these groups.

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Conclusion and Future Directions

This chapter has presented a range of ideas and concepts about social inclusion in rural communities. First, the concept of social inclusion was discussed followed by rural communities and then social inclusion in rural communities. Using Wilkinson’s framework, understanding social inclusion through interaction at the individual, group, and broader levels highlighted how inclusion manifested differently in rural, compared to urban, communities. This approach was used to demonstrate the complexity of inclusion/exclusion across class, gender, age, ability, language, and culture in specific rural places and through interactions with a higher proportion of strong ties. Then, case studies of research in rural areas about social inclusion in health care highlighted the strength of social norms in replicating inclusion/exclusion and suggested that increasing inclusion creates long-term change. The authors hope this has provided a way to understand, work in, and advance inclusion in rural places. Overall, this chapter highlights the importance of power, interaction, and the lack of weak ties in inclusive practice in rural communities. Returning to our first scenario, Mike lacked the status, networks, and power to challenge rumors that he had pressured Melanie for sex. While information circulated quickly around town, Mike was not able to find out Melanie’s perspective or the source of the rumors. His reticence to challenge the rumors was his perspective of his own power relations; instead he withdrew from social life and planned to leave. Such exclusion, based on mis-information, can be difficult to change and harmful for individuals. The second scenario of the COVID-19 pandemic highlighted how individuals who lacked resources, income, and access to the Internet experienced more severe exclusion from lockdowns. This was more likely rural residents, low income people, and elderly residents who lacked the ability to access services and interact regularly via technology. These scenarios heighten the need for more inclusive practices in rural communities. Research that addresses these inequities assists to challenge such exclusionary interactions in rural communities. Several key points emerge from our discussion in this chapter: 1. Social inclusion is about the ability to participate in local, regional, and global society. 2. Rural residents tend to have lower levels of income, education, and health outcomes and less access to services. Rural regions are also typically less valued than urban areas. 3. Interaction is key to inclusion in rural communities where people lack anonymity; exclusion in one area of life often extends to other areas. 4. Social inclusion is complex, dynamic, and place-based. Rural communities are different and inclusion crosses many dimensions of class, gender, status, and other delineations of power relations. 5. Developing inclusive practices in rural communities requires engagement, taking things at the pace of the community, working with local networks, and adopting pluralistic approaches.

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6. Research in rural communities needs to work with local networks, develop relationships, be undertaken over time, and work with (and possibly employ) local people. Using diverse data collection methods, taking time for research and being respectful of local ways of doing things enhances understanding of what is at the heart of exclusion.

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The Exclusions of Imprisonment Harms, Pains, and the Promise of Restorative Practices

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Rationales for Social Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Birth of the Penitentiary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Deprivations of Incarceration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Challenges of Reentry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Incarceration, Social Exclusion, and Inequalities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 The Promise of Restorative Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Discussion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

By definition, prisoners are physically excluded from mainstream society. In practice, they are typically socially excluded as well. This chapter begins with an overview of the dominant penal rationales that have historically been used to justify these exclusions. It then goes on to outline myriad examples of the formal and informal exclusions that are routinely faced by current and former prisoners. A recurring theme is that these exclusions introduce harms and pains into the lives of those who experience them. Moreover, the fact that these challenges are differentially experienced based on extralegal factors such as race and gender is also stressed. This chapter ultimately concludes by advocating for a more inclusive penology that employs restorative practices to minimize the struggles that current and former prisoners experience from being socially excluded. Keywords

Extralegal factors · Felon disenfranchisement · Penology · Prisoner reentry · Restorative justice · Restorative practices J. E. Sutton (*) Department of Sociology, Hobart and William Smith Colleges, Geneva, NY, USA e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_45

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Introduction After two decades of continuous confinement, it feels as if the world of prison and prisoners is all I know Michael Santos (Santos 2006, p. xvii)

Social exclusion is all too often one of the concomitants of incarceration, as physically separating prisoners from free society typically knifes off their social ties. Tangcharoensathien et al. (2018, p. 3) define social exclusion as “the process of marginalizing individuals or groups of a particular society and denying them from full participation in social, economic and political activities.” This conceptualization suggests that “marginalizing” and “denying” are deliberate processes, which is certainly the case whenever a decision is made to put someone in prison. This chapter begins with an overview of the common rationales that have guided the deliberate use of social exclusion as a penal practice. It then presents synopses of the deprivations commonly experienced by prisoners and the challenges that social exclusion poses to those who attempt to reenter society upon release. It goes on to share insights into how the deprivations of prison and challenges of reentry often vary depending on prisoners’ social statuses, with an emphasis on the ways in which social exclusion reflects and reinforces social inequalities. It then concludes with an introduction to strategies that show promise for repairing the harms caused by social exclusion. Given that the United States is the birthplace of the modern prison (Johnson et al. 2017) and that it incarcerates more of its citizens than any other nation in the world (The Sentencing Project 2018), these themes are focused on primarily in the US context.

2

Rationales for Social Exclusion

While there is generally agreement that criminal wrongdoing should be met with some sort of societal response, the nature and objectives of that response are typically hotly contested. A handful of rationales for punishment have been at the forefront of penal practices for the past several 100 years, with retribution, deterrence, incapacitation, and rehabilitation being the most prominent. Accordingly, these four rationales are briefly outlined below, with special attention given to how their fundamental assumptions apply to incarceration in the United States in current times. Retribution. The oldest rationale for punishment is retribution, which entails punishment for the sake of enacting revenge upon the offender. The notion of lex talionis, or “an eye for an eye,” is a retributive objective formally expressed in the Code of Hammurabi and other subsequent codes of law (Driver and Miles 1952). In early societies that predated these codes, a common example of a retributive punishment was blood feuds (Seagle 1946). With respect to current times, proponents of retribution would likely endorse the use of incarceration for vengeance, with any ensuing social exclusion serving as a source of pain toward achieving this end.

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Deterrence. During the Enlightenment era, deterrence emerged as a new punishment rationale that was informed by the works of utilitarian thinkers such as Cesare Beccaria and Jeremy Bentham (Beccaria 1963; Bentham 1948). These scholars are regarded as the founders of what has come to be known as the Classical School of Criminology, which advocated for proportional and rational punishments geared toward deterring individual offenders (specific deterrence) and others in the community (general deterrence) from offending in the future. With respect to current times, proponents of deterrence would likely endorse the use of incarceration and any ensuing social exclusion to show people the consequences of offending. Hence, their emphasis would be on punishment for the purpose of preventing future crime, not to enact revenge. Incapacitation. A rationale for punishment that began gaining momentum in the 1980s is incapacitation, which entails removing offenders from free society to eliminate opportunities for additional offending (Zedlewski 1987). Going back to the work of Wolfgang and colleagues (Wolfgang et al. 1972), criminologists have established that the majority of crimes that are committed are perpetrated by a small subset of the offender population. Given this finding, identifying and incarcerating these offenders through the process of “selective incapacitation” should cut down on crime (Greenwood and Abrahamse 1982). Incapacitation focuses on imprisonment and is generally regarded as a newer rationale. However, banishment and the use of “transportation” in the eighteenth century, such as when offenders were sent to prison colonies (Hughes 1987; Liggio 1977), share incapacitation’s more general goal of removing disreputable people from society. With respect to current times, proponents of incapacitation would likely endorse the use of incarceration and the ensuing social exclusion for the purposes of removing offenders and protecting free society. Rehabilitation. Whereas retribution, deterrence, and incapacitation are similar in that they embrace punishment, albeit for different objectives, rehabilitation is unique in that its emphasis is on meeting offenders’ needs and helping them change. Rehabilitation programming in prisons was common during the mid-twentieth century. It then began falling out of favor in the late 1970s on the heels of Robert Martinson’s influential report on the ineffectiveness of rehabilitation in prison settings (Martinson 1974). With respect to current times, proponents of rehabilitation would likely view the social exclusion that comes with incarceration to be incongruent with rehabilitative objectives. Accordingly, they would be less likely to endorse incarceration and would instead prioritize community alternatives that leave offenders’ social supports intact. Rationales in Sum. This brief outline of retribution, deterrence, incapacitation, and rehabilitation is intentionally oversimplified. Rather than providing comprehensive and critical assessments of these rationales, the goal here has simply been to articulate their basic claims. More thorough overviews can easily be found in any penology textbook or through a quick Internet search. For the purposes of this chapter, the main takeaway is that social exclusion has historically been deliberately pursued as a penal practice, and these four rationales represent the main reasons why. Despite the tendency of current rehabilitation proponents to eschew incarceration,

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earlier supporters of rehabilitation advocated strongly for the use of social exclusion in the form of the penitentiary.

3

Birth of the Penitentiary

Modern incarceration has its origins in the penitentiary model that emerged in Philadelphia in the late 1700s and early 1800s. Quaker reformers who believed that solitary confinement would induce penitence were instrumental in the penitentiary’s development (DePuy 1951). The first penitentiary was established in 1790 at the Walnut Street Jail (Skidmore 1948), and it served as the basis for what became known as the Pennsylvania System (DePuy 1951). Johnson et al. (2017, p. 38) provide a nice summary of the envisioned hopes for the penitentiary: The penitentiary was the first truly modern prison. It was the template or model from which most if not all subsequent prisons were cast. In the most general sense, the penitentiary was meant to be the perfect prison a separate, self contained, pure moral universe dedicated to the reclamation of wayward men and women. It would isolate criminals from a corrupt and corrupting world, and it would reshape their characters through the imposition of a strict routine of solitude, work, and worship.

Early proponents of the penitentiary believed that social exclusion and isolation would correct behavior. Unfortunately, they did not account for the harms and pains that come with being removed from free society.

4

Deprivations of Incarceration

Goffman (1961, p. xiii) defines the total institution as “a place of residence and work where a large number of like-situated individuals, cut off from the wider society for an appreciable period of time, together lead an enclosed, formally administered round of life.” Prisons are clear examples of total institutions, and those who are held in them experience the loss of privacy, agency, intimacy with others, and security that together symbolize life in free society (Sykes 1958). The deprivation and loss of liberty that comes with being incarcerated are readily apparent when looking at the following examples of rules from two infamous US prisons: You are entitled to food, clothing, shelter and medical attention. Anything else that you get is a privilege. Alcatraz Federal Penitentiary You must obey promptly, all directions given to you, either by the Inspectors, Warden, or Overseers. Eastern State Penitentiary

As these rules show, socially excluding offenders by placing them in prisons introduces a loss of control and power, with prisoners being subservient to both those who watch over them and the institutionalized practices of their environments.

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These conditions are inherently dehumanizing, which is particularly evident when looking at past exploitations of prisoners as research subjects. Leo Stanley, a Eugenicist and the Chief Surgeon at San Quentin State Penitentiary from 1913 to 1951, is the most extreme example of a researcher who viewed prisoners as readily accessible pawns for experimentation. In nearly 40 years at San Quentin, Stanley experimented on over 10,000 prisoners, including hundreds who received animal testicle implants (Blue 2009). Social exclusion in this case prevented prisoners from receiving the dignity routinely afforded to nonincarcerated research participants. Fortunately, the implementation of the Belmont Report in 1978 led to formalized protections for prisoners and other vulnerable human subjects in research (Ryan et al. 1979), thereby relegating the kinds of experiments that Stanley conducted largely to the past. Moving beyond the spectacle of Leo Stanley, the dehumanization and social exclusion of prisoners continues to persist in more insidious forms. For instance, prisoners lose their right to vote (Chung 2019), and the US Census counts them as residents of the prison rather than their home communities (Hamsher 2005). Prisoners’ voices are also mostly missing from the scholarly work on prisons and prisoners, which has compelled a group of former prisoners who are now academics to establish the convict criminology subarea for advancing their ideas (Richards and Ross 2001). Prisoners are socially excluded from nearly all facets of representation and participation in free society. This includes obstacles to maintaining connections with children (Travis et al. 2005), a lack of access to Pell grants for higher education (Ubah 2004), and missed opportunities to be present for the child births, graduations, weddings, funerals, and other milestones in the lives of loved ones. The set of deprivations presented in this chapter is by no means exhaustive, but it is nonetheless representative of the profound reach of social exclusion into the lives of prisoners. Of those who have been incarcerated in the United States, approximately 95% will be released back into the community at some point (Hughes and Wilson 2020). Each of these exclusions, therefore, must be overcome if prisoners are to successfully reestablish ties to the community upon release from prison.

5

Challenges of Reentry

On any given day, the United States has a little over 1.4 million people in state and federal prisons (Carson 2020) and another 700,000 or so in local jails (Zhen 2020). Approximately, 650,000 prisoners are released from prison each year (United States Department of Justice n.d.), and another 10,700,000 people cycle in and out of local jails on an annual basis (Zhen 2020). A consistent finding from recidivism studies (Recidivism studies tend to focus on ex-prisoners given that most jail inmates are only detained for shorter periods of time) is that approximately two-thirds of those who leave prison are rearrested within 3 years (Alper and Durose 2018). Each subsequent crime upon release from prison typically results in new pain for offenders and their families, new victims in the community, and new expenditures of

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resources by the criminal justice system. For these reasons, it is in our collective best interest to care about prisoner reentry. The fact that most prisoners continue to have trouble after serving their sentences points to the challenges of reintegrating those who have been formally excluded from society. While an overview of the myriad reasons for high recidivism rates goes beyond the scope of this chapter, ex-prisoners’ continued struggles with social exclusion lay at the center of this problem. There are two general questions that pertain here. First, how do challenges stemming from the social exclusions associated with being in prison carry over once someone leaves? In deprived prison settings, prisoners go through a “prisonization” process through which they become socialized into prison culture and acclimated to the rhythms of life in a total institution (Clemmer 1940). Reversing prisonization once it comes time to be included back into free society is a difficult task, with reclaiming agency after adjusting to deprivation-induced powerlessness being an ongoing struggle. Second, how do new social exclusions attached to the ex-prisoner status pose additional hurdles upon release into the community? The challenges of transcending prisonization are further compounded by the difficulties of navigating the restrictions imposed by an exclusive and unwelcoming society. For instance, Travis (2002) has noted that returning former prisoners often encounter “invisible punishments” that curtail their rights, including the denial of welfare benefits, disqualification for student loans, ineligibility for certain jobs, and being barred from public housing. The stigma encountered by ex-prisoners is profound, with one additional invisible punishment being the ongoing tension, anxiety, and stress that comes with managing a “spoiled identity” in face-to-face interactions with others (Goffman 1963).

6

Incarceration, Social Exclusion, and Inequalities

The difficulties that social exclusion introduces into the lives of current and former prisoners are not experienced equally. When looking at patterns of differential treatment, it is helpful to distinguish between legal and extralegal factors. While both can lead to social exclusion and both are reflected in the differential treatment of prisoners, extralegal factors are the ones that are primarily intertwined with social inequalities. Some illustrative examples are provided below. Legal Factors. Legal factors correspond with offending and influence one’s experiences with the justice system, with examples being the kind and severity of the offense committed and the offender’s criminal history. With respect to social exclusion, sex offenders are a group that faces unique circumstances upon release from prison given the nature of their offense. For instance, many jurisdictions prohibit sex offenders from living near parks, schools, and other places that children frequent, which excludes these offenders from accessing potential amenities in these areas (Levenson and Hern 2007). A different example that also pertains to sex offenders is the use of civil commitment laws, which allow for the continued imprisonment of people who are deemed to still be a risk after they have technically completed their sentence (Miller 2010). In this example, sex offenders are excluded

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from their freedom based on fears about what they might do, while most other offenders do not have to contend with this additional form of exclusion because they are not targeted by civil confinement laws. Extralegal Factors. Extralegal factors influence one’s experiences with the justice system despite having nothing to do with offending itself, with two examples being race and gender. In terms of race, it is important to recognize that the broader criminal justice system disproportionately ensnares African Americans at every level. This strongly suggests that mass incarceration has emerged in the United States as a system of institutionalized discrimination that socially excludes African Americans through disenfranchisement and oppression (Alexander 2010). An illuminating example of the raced-based social exclusion that is often encountered by ex-prisoners is found in Devah Pager’s well-known experiment on employment discrimination. Pager’s study (Pager 2003) focused on pairs of white men and black men who applied for the same jobs. They were given fake resumes and training that made their backgrounds and interview performances the same, with the only exception being that one white man and one black man had a drug conviction and prison sentence on his resume. Pager found that white men without a record were most likely to get a call back, and black men with a record received the fewest calls. Moreover, the numbers of calls received by black men without a record and white men with a record were comparable. These findings provide strong empirical evidence of stigma and social exclusion based on both race and having a prison record. Gender is another extralegal factor that shapes prisoners’ experiences with social exclusion. Most basically, women have typically been excluded from consideration by policy-makers (Bloom et al. 2004), despite having unique needs when compared to men in prison. For instance, approximately 4% of women prisoners are pregnant upon arrival (Sufrin et al. 2019), yet there are many institutions where basic standards for care during pregnancy are not mandated and go unmet (Ferszt and Clarke 2012). This is unfortunately no surprise given that the health care needs of women prisoners have historically been overlooked (Acoca 1998). Along with pregnancy, women enter prisons with more extensive backgrounds of victimization, HIV infection, mental health challenges, and substance abuse than men (Eliason et al. 2004; Jordan et al. 1996; Zlotnick et al. 2008). To the extent that women in prison are excluded from consideration and concern, their inability to receive adequate levels of support for these ailments will likely continue. Thus far, race and gender have been introduced separately. It is crucial to recognize that prisoners’ statuses ultimately intersect when shaping their experiences with social exclusion. Building upon themes that have already been introduced, poor nonwhite women are among those who have been negatively impacted the most by mass incarceration in recent decades. For instance, the growth in women’s rates of incarceration during the height of the prison boom was almost twice the growth rate for men, and most of these women were African American or, to a lesser extent, Hispanic (Mauer et al. 1999). This is a reflection of the fact that African American women have been disproportionately punished by both the war on drugs (BushBaskette 1998) and the invisible punishments routinely faced by ex-prisoners upon their return to the community (Travis 2002).

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As has been the case in previous sections, a thorough examination of the linkages between incarceration, social exclusion, and inequalities goes beyond the scope of this chapter. The selected examples that have been presented here are by no means exhaustive and have instead been provided to encourage the questioning of how legal and extralegal factors shape the social exclusion of current and former prisoners. Toward this end, there are distinct experiences with social exclusion associated with other extralegal factors that were not focused on here, including statuses such as social class, age, sexuality, and (dis)ability status. The social exclusion of prisoners clearly reflects social inequalities, as the groups with the least amount of power are the most likely to be punished and incarcerated (Reiman 2001). Social exclusion directly reinforces social inequalities as well, as involvement with the criminal justice system exacerbates the ongoing struggles of people who are most disadvantaged by social stratification. Many of those who are stuck in the cycle of incarceration, reentry, and recidivism have been kicked aside by free society through myriad social exclusions that have accrued across the life course (Western 2018). Given the cumulative harms and pains that result from exclusionary penal practices, it is time to explore the merits of more inclusive approaches that do not deliberately marginalize, deny, and deprive.

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The Promise of Restorative Practices

The beginning of this chapter introduced the prevailing rationales for punishment that have supported the social exclusion of prisoners for hundreds of years. Subsequent sections then outlined several problems that the social exclusion of prisoners poses for individuals and communities. Attempts to transcend these sorts of challenges are reflected in the development of newer restorative practices that emphasize inclusivity. Brief introductions to three promising examples are provided below. Restorative Justice. Whereas traditional justice models focus on punishing those who violate the law, the objective of restorative justice is to repair the harm caused by the offense (Zehr 2003). While restorative justice practices vary, one example of this kind of response might involve bringing the offender, victim, and members of the community together to discuss the harm introduced by the offense and the best ways to address it. Through dialogue featuring all who were involved or affected by the incident, victims have an opportunity to articulate the harm they experienced and their wishes for resolving it, offenders have a chance to take responsibility and make amends, and a collective plan can be developed to restore the social equilibrium that existed prior to the offense. This type of approach is inherently inclusive and has intuitive appeal as an alternative to incarceration for lower-level offending. Moreover, it can also be used successfully with incarcerated individuals who have perpetrated violent acts, including rape and murder (Miller 2011). Reintegrative Shaming. The negative and lasting impacts of stigma, which were noted earlier, should be expected outcomes of punishments that focus on shaming and humiliating offenders. An alternative approach is reintegrative shaming, which is a more forgiving form of shaming that expresses disapproval of the offense but

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ultimately allows the offender to rejoin society after punishment (Braithwaite 1989). For instance, prisoners in the United States are publicly shamed and officially deemed criminal when they are found guilty in a court of law. Upon completion of a prison sentence, they then quietly reenter society with no public reclassification of their status. By way of contrast, a reintegrative shaming approach might entail a “relabeling ceremony” upon completion of one’s prison sentence to publicly signify that the person has paid their debt to society and is now officially ready to return. Higher Education. While restorative justice and reintegrative shaming represent new philosophies for punishment, higher education is a more general pursuit that has the potential to be a restorative practice. The Inside-Out Prison Exchange Program is an instructive example. Inside-Out is a prison-based higher education program that embraces an inclusive pedagogy. It entails bringing college students from free society, known in the program as “outside students,” into prisons to learn in interactive classrooms with incarcerated students, who are known in the program as “inside students” (Allred 2009). When reflecting on the transformative power of this model, one of the founding inside students reflected that “On a personal level, I expanded as a human being; I found a larger vision for myself and how I was connected to my community and the rest of the world” (Allred 2009, p. 138). This inside student’s name is Tyrone Werts, and his quote demonstrates the power of higher education to forge connections that reach beyond the walls of prison.

8

Discussion and Future Directions

This chapter has outlined many examples of the struggles that prisoners typically experience when they are socially excluded. Upon release from prison, former prisoners are left to contend with both the residual effects of prior exclusions that they experienced as prisoners and new obstacles stemming from having an ex-prisoner status. Too often, the result of these entanglements is ongoing involvement in the cycle of imprisonment, reentry, and recidivism. This is unfortunately to be expected in an unforgiving society. Prisoners in the formal sense of the word have been the focus up to this point. In an ironic twist, there actually are parallel populations that are also marginalized by the justice system but are excluded from the visibility and services that “official” prisoners receive. One troubling example is exonerated former death row prisoners. Upon being exonerated and released from prison, exonerated former death row prisoners do not qualify for prisoner reentry programming because they technically are no longer under correctional supervision (Westervelt and Cook 2012). Simply put, these individuals are abandoned by the systems that wrongfully convicted them and are largely left alone to reintegrate back into an unwelcoming world. Kirk Bloodsworth, the first death row prisoner to be exonerated with DNA evidence, routinely encountered suspicion, stigma, and exclusion after he was officially exonerated and released from prison (Junkin 2005). His case serves as a reminder of the profound harm that exclusionary models of punishment routinely inflict.

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Another example is people who are incarcerated in settings that are not technically deemed to be correctional facilities. For instance, the United States passed the Prison Rape Elimination Act (PREA) in the early 2000s, which provided a basis for monitoring and responding to prison rape (National PREA Resource Center n.d.). This was a significant step toward making prisons safer for prisoners. However, institutions that are not technically classified as correctional facilities, such as psychiatric hospitals that house forensic populations or private camps for delinquent juveniles, do not fall under the jurisdiction of PREA. As a result, the individuals who are imprisoned in these facilities are excluded from the protections that PREA provides for “prisoners.” The social exclusions that correspond with incarceration and reentry introduce great harm and pain. This chapter outlines commonalities in these experiences, but it in no way captures or adequately conveys the hurt or visceral toll that these experiences have taken on those who have lived them. The deliberate marginalization of prisoners reflects and reinforces existing social inequalities, and it also contributes to high recidivism rates. Author and former prisoner Michael Santos 2006, p. xxiii) wrote that “those of us in prison live as the pariahs of society, and it is only through extraordinary efforts that some men are able to cultivate networks of support that will help them overcome the obstacles certain to follow confinement.” This quote succinctly articulates the self-fulfilling prophecy that is loosely framed by the previous sections of this chapter; socially excluding and vilifying offenders will result in “villains” who are detached from society. In the words of Santos (2006, p. xxiii): “It would seem that such isolationist policies are more likely to contribute to America’s surging prison population levels through increased recidivism.” As an alternative to such isolationist policies, the promise for a more inclusive penology can be found in restorative practices.

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Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Concept of Unwed Mothers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Legislation Relevant to Child Rearing Unwed Mothers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Single Parent Support Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 National Basic Livelihood Security System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Act on Enforcing and Supporting Child Support Payment . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Act on Special Cases Concerning Adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Act on Registration of Family Relations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Current Social Services for Child Rearing Unwed Mothers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Unwed Mothers’ Alternatives to Child Rearing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Abortion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

In South Korean society, child-rearing unwed mothers constitute a very specific minority. They enjoy no specific legal protections to exercise their right to keep and rear their children, nor are there any comprehensive policies in place to promote social acceptance and substantive inclusion of them and their children. B. Y. Han (*) Hankuk University of Foreign Studies, Seoul, South Korea e mail: [email protected] M. O. Yang Sun Moon University, Asan, South Korea e mail: [email protected] R. Gustafsson Asia Institute, The University of Melbourne, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_46

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This chapter provides an overview of the social exclusion of child-rearing unwed mothers in South Korea, attending to the ways in which legal and social frameworks intersect and have been at times mutually reinforcing. The authors outline and discuss concepts of unwed motherhood, widespread discrimination in multiple social contexts, legislation relevant to unwed mothers and their families, current social services and barriers to accessing these, as well as alternatives to child-rearing. The authors argue that social exclusion involves the multidimensional, processual, and dynamic ways in which individuals are marginalized, and which limit their meaningful participation and sense of belonging in the society in which they strive to craft livable lives. Key to this chapter’s analysis of the social exclusion of child-rearing unwed mothers and their families is the role of pervasive social stigma and shame, which continue to have a deleterious impact on the accessibility of social services (regardless of formal entitlement to those services), sense of belonging, visibility, and social participation. Keywords

Unwed mother · Child-rearing · Adoption · Social welfare · Social exclusion · Korea

1

Introduction

In South Korean (here after Korea) society, child-rearing unwed mothers constitute a very specific minority. They enjoy no specific legal protections to exercise their right to keep and rear their children, nor are there any comprehensive policies in place to promote social acceptance and inclusion of them and their children. Indeed, Korean Constitutional law has since 1948 linked the concepts of marriage and family, thereby creating ample room to exclude unwed mothers and their children from formal recognition as family – and from the protections the State otherwise guarantees families (Yi 2012). Since the mid to late 2000s, advocacy organizations including Korean Unwed Mothers Support Network (KUMSN) and the unwed-mother led organization Korean Unwed Mothers and Families Association (KUMFA) have been established, which have provided much needed support and promoted more social awareness of child-rearing unwed mothers and their children. There have also been improvements in social services and the social service delivery system. However, these improvements, while significant, have arisen largely through government concerns with falling fertility rates, which reached a historic low of 1.08 in 2005 and has since dropped even further to 0.92 in 2019. That is, political will to recognize unwed mothers’ child-rearing rights have been prompted by imminent demographic challenges, and not as an outcome of widespread and sustained concern with reproductive justice. Despite newly introduced and expanded social services and support programs, unwed mothers and their families remain significantly marginalized and socially excluded in Korean society.

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The concept of social exclusion derives from mid-1970s France, designating individuals whose social bonds have been broken due to institutional failures and insufficient state support (Gordon 2007). In the UK, the concept has typically been used to refer to poverty and material disadvantage (Gordon 2007). Within European social policy more broadly, social exclusion has been employed to account for the multidimensional aspects of poverty, departing from a narrower focus on the lack of economic and material resources (Kim 2018). The concept is also broad enough to include social positionalities like gender and ethnicity (Saunders 2008). While there are numerous definitions of the concept, the “general consensus” is that adequately understanding social exclusion entails going beyond income measures and material resources, focusing also on health, education, housing, and access to social services (Millar 2007; Kim 2018). As Millar (2007) argues, research on social exclusion ought to consider individuals as relational, analyze availability of resources, recognize agency, and importantly, emphasize the dynamic, temporal nature of the social. In other words, social exclusion pertains not just to one’s position in society, but also to the reproduction of the social. Drawing on Room (1995) and Atkinson (1998), social exclusion can be defined as: the multidimensional, processual, and dynamic ways in which individuals are marginalized, and which limit their meaningful participation and sense of belonging in the society in which they strive to craft livable lives. “The opposite of social exclusion,” as Millar (2007, p. 3) contends, “is not integration or inclusion” but participation. Key to this chapter’s analysis of the social exclusion of child-rearing unwed mothers and their families is the role of pervasive social stigma and shame, which continue to have a deleterious impact on the accessibility of social services (regardless of formal entitlement to those services), sense of belonging, visibility, and social participation. This chapter provides an overview of the social exclusion of child-rearing unwed mothers, attending to the ways in which legal and social frameworks intersect and have been at times mutually reinforcing. The first section outlines concepts of unwed mothers in Korean society, demonstrating the legal basis for enduring negative stereotypes, and the close association between adoption and unwed motherhood. Second, the forms of social discrimination unwed mothers face are discussed. This section provides an ecological perspective on types of discrimination and sites of exclusion, which range from the intimate sphere of the family and neighborhood, through to institutional contexts. Third, legislation and recently introduced policies relevant to unwed mothers are outlined, including the Single-Parent Family Support Act (2008) and the recently revised National Basic Livelihood Security System (2014). Fourth, current support services and programs available to child-rearing Unwed mothers and their families are outlined and assessed. Alternatives to childrearing and the importance of adoption legislation are then briefly discussed. Finally, the discussion section offers the authors’ analysis of the ways exclusion and marginalization persist, despite incremental changes to available social services and programs. Indeed, some policies designed to alleviate social exclusion may unintentionally further entrench marginalization. Addressing child-rearing unwed mothers’ social exclusion requires not only more targeted support services and

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programs, but larger-scale shifts in societal understandings of what constitutes “legitimate” motherhood, parenthood, and family.

2

Concept of Unwed Mothers

The term mihonmo, which literally translates as not married mother, has often been used to refer to women with vastly different experiences and diverse backgrounds, including women who have relinquished or lost their children to adoption, those who choose to be single mothers, and women who become pregnant while not married to the child’s father and yet pursue child-rearing. Conflating these experiences has created a culture of misrepresentation and for the child rearing unwed mother rendered her struggles invisible in mainstream society. Since the 1980s, the vast majority of Korean transnational adoptees have been children of single mothers. Many give birth in secluded maternity homes, some of which are linked to adoption agencies, which constitute sites of biopolitical production and regulation (Hübinette 2007; Kim 2016). From 1961, the law Yllakhawgwi Pangibop (Law Against Morally Depraved Behavior) provided the legal foundation for maternity homes. The law stipulated that the public was to report women who are sex workers, poor or likely to engage in sex work to the authorities so they can undergo rehabilitation (Kim 2016). In order words, pregnant women and unmarried women with children have traditionally been strongly associated with sex workers and morally depraved behavior. Many of the women from these maternity homes relinquished their children for adoption in the hope of “doing the right thing” (Dorow 1996; Han 2010). Their motherhood has been characterized by loss and yearning, sacrifice and grief, but above all an absolute lack of self-determination. In her study of Korean birthmothers, Hosu Kim (2015, p. 79) argues that single pregnant women are subject to what she calls “pre-natal alienation,” whereby they are alienated from reproductive choice, labor, as well as their children. In addition to being represented as deviant and transgressive, upon relinquishing their child they suffer “the double stigma of sexual transgression and absent mothering” (Kim 2015, p. 79). Numerous women have been forced into relinquishing their children due to poverty, domestic violence, sexual violence, patriarchal pressure, and stigma. Indeed, many of the women entering these maternity homes only did so because family members and other medical and health care professionals actively intervened and facilitated the intake procedure. Even today, younger pregnant women are often given little choice in determining their child’s future as captured in Engelstoft’s (2019) documentary Forget Me Not. Original mothers have not only been socially isolated but have also suffered the repercussions of the child’s legal status in the absence of the child’s father. Korea does not have a universal birth registration system, but instead employed the patriarchal family-based Hojuje up until 2008. Under this system, individuals belong to the male family head, whether there exists an actual genealogical relationship or not. For individuals without a male family head, the local city or district officials would place them on their own orphan-hojuk, without any other proof of birth or

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origin (Oh 2015). The fact that the birth of a child is not automatically registered by authorities has left open the possibility of falsified birth reporting, by, for example, registering the child was born to an uncle, grandparent, or complete strangers. Through such administrative loopholes, children of women giving birth outside of marriage have largely been absent from public records. A more recent term for women raising their children on their own is bihonmo, single mother by choice. The term bihonmo, although also carrying the literal meaning “not married mother,” signals a self-perception characterized by selfdetermination in rejection of the social norm of marriage (Choi 2006). These women enter pregnancy and child-rearing, not by coincidence or force, but have made a conscious decision to pursue motherhood separately from marriage. They reject the shame, pity, and victimhood otherwise associated with unwed mothers (Yang 2012). This chapter focuses on the third group of mihonmo defined as child-rearing unwed mothers. Their pathway to parenthood often starts with an unexpected pregnancy and the difficulties following their choice to assert their right to keep and rear their children. Although most of the women are in a relationship with the child’s father at the time of pregnancy, the men choose to end the relationship and remain uninvolved in the child’s life. Thus, the women’s child-rearing choice comes not only as a desire to carry the pregnancy to term and nurse their child but also to assume responsibility for their actions and make the best decisions for their child and themselves (Lee et al. 2018). Although child-rearing unwed mothers generally speak of similar experiences with their children’s fathers, the group varies greatly with regard to age and educational background. In their 2010 proposal for social welfare services for low-income child-rearing unwed mothers, the Korea Women's Development Institute (KWDI) pointed out that the number of teen unwed mothers is decreasing, and at the time only accounted for 26–30% of the total number of unwed mothers. Women in their 30s made up approximately 50–60%, while the remaining mothers were older. In a survey of 213 unwed mothers, approximately one-third were either enrolled in or had graduated from college, 37% had graduated from high school, approximately 23% were enrolled or on leave from high school, and less that 10% had a middle school degree or lower.

3

Social Discrimination

Child-rearing unwed mothers face various forms of discrimination, negative stereotyping, and stigma in multiple spheres that constrain their social participation and ability to thrive (Noh et al. 2015). Taking an ecological perspective, unwed mothers face stigma and discrimination at the interpersonal and familial level, through to their educational and workplace settings, as well as in their interactions with healthcare and service providers and government officials. Results from a survey conducted by the Korean Women’s Development Institute among 2,000 adults in 2007 on the issue of child-rearing unwed mothers and their children found that this specific type of family formation was very likely to be perceived in a negative and discriminatory

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manner by Korean society – second only to the LGBTIQ+ community (Kim and Ahn 2009). The same study also revealed that people in general tolerate unwed mothers as neighbors and as colleagues, but do not want a closer personal relationship with them (Kim et al. 2009). The KWDI also inquired into the opinions of experts in contact with child-rearing unwed mothers such as public officials, staff and representatives for women’s organizations, professors and researchers and staff and representatives from NGOs. The study found that 50 out of 53 respondents (94.3%) were of the opinion that child-rearing unwed mothers face much or very much discrimination (Kim and Kim 2012). These results clearly show that childrearing unwed mothers and their children are not accepted on equal footing with other families in Korean society. Negative stereotypes of child-rearing unwed mothers cause many women to reproduce and project this image on to themselves when they become a childrearing unwed mother. Internalizing these social prejudices, and faced with constant pressure from these longstanding patterns of negative attitudes and discriminatory behaviors, many women choose to hide the fact of their pregnancy – even to their closest family members (Lee et al. 2018). The lack of social support is sadly a common experience for these women as they go through pregnancy and childbirth to pursue motherhood. Ostracized by the child’s father, their own parents, colleagues, and friends, and met with disdain in public settings such as local government offices, medical care facilities, and child care institutions, these women pay huge emotional costs to retain their child-rearing rights (Kim et al. 2012). Interviews with child-rearing mothers have found that their parents are generally strongly against their child-rearing choice and demanded either adoption or an abortion (Yang 2012). The family will cut off all ties or simply exclude the women from the family when they insist on keeping and rearing the child. Exclusion from the family will have not only great emotional consequences for the women but also financial impacts. Since people usually live with their parents until marriage, exclusion from family may result in loss of safe housing (Kim et al. 2012). Estranged from their immediate support network, some women make the choice to abandon their infants, and others express a wish to relinquish their child for adoption, due to estrangement from the child’s father and/or his explicit wish not to be involved in child-rearing. Unwed mothers face significant barriers when it comes to retaining employment. Indeed, child-rearing unwed mothers face an almost impossible dual role as sole breadwinner and caretaker. Many will lose their job for the simple reason that they are child-rearing unwed mothers and are thereby forced into lower paying unstable private and public part-time jobs, retraining jobs, or forced to rely on welfare benefits (Kim et al. 2012). Some will quit their jobs to protect their physical and emotional health, while others are forced to do so because they have been outed as a pregnant unwed mother (Lee et al. 2018). Workplace harassment from employers and co-workers is not uncommon, which can result in unwed mothers quitting due to shame and low self-worth (Lee and Yang 2019). Since women have not been fired, but rather have quit “voluntarily,” they do not have grounds to sue their employers on the basis of discrimination. Their self-removal from, and inability to self-advocate in the workplace, attest to the pervasiveness and force of negative stereotypes of

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unwed motherhood, and the profound emotional costs of internalized stigma. Furthermore, the lack of child care support options – both private and public – contribute to difficulties in securing full-time employment. Child-rearing unwed mothers also encounter negative perceptions, stereotypes, and discrimination in their interactions with the official social service delivery system. In various studies on this issue, unwed mothers share stories of confrontations with healthcare professionals, nursery school teachers, and public officials; these are often of a demeaning and degrading nature, reinforcing women’s internalized self-hatred (Lee et al. 2018; Sung et al. 2016) These studies have found that healthcare professionals do not respect the women’s right to motherhood, share the women’s private information without consent (including details about their marital status), and generally treat them very harshly. In addition, women often come into contact with public officials at the local government office, during pregnancy and during child-rearing. For instance, according to Korean law on birth registration, the women must register their child as “child born outside marriage” at the local government office. This is a significant site and process whereby women and their children are subject to humiliation and shaming in public. Women describe public officials’ behavior as unkind, authoritative, and discriminative, and conclude that they are of little actual assistance because they provide insufficient and inadequate information. Furthermore, starting as early as nursery school, the children of unwed mothers are treated differently by their teachers for the sole reason of being born to an unwed mother (Lee et al. 2018; Sung et al. 2016; Yang 2012).

4

Legislation Relevant to Child-Rearing Unwed Mothers

A range of social welfare services and programs are available for child-rearing unwed mothers and their children. These include policies created across: the Ministry of Health and Welfare, who are tasked with legislating on children, “normal” families and those in need, and the Ministry of Gender Equality and Family who since 2001 (then The Ministry of Gender Equality) legislate on matters related to youth and women. Child-rearing mothers point out that accessing and navigating these options are a key obstacle for them during both pregnancy and child-rearing (Kim et al. 2018b). Importantly, these are not universal services, and qualifying for one scheme will disqualify the recipient from another. In practice, the child-rearing mothers will have to decide between receiving services through the Single-Parent Support Act, assuming they have a high enough income to largely provide for themselves, or the National Basic Livelihood Security System, under which they cannot have significant income if they are to qualify to receive full benefits.

4.1

Single-Parent Support Act

The Mothers and Fatherless Child Welfare Act was first established in 1989 and revised in 2002 when it became the Single-Parent Welfare Family Welfare Act. In

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2007, it was revised and renamed the Single-Parent Support Act, which came into effect in 2008. Under the new legislation, the government has steadily increased the amount of child care financial assistance from 50,000 won/month in 2007 to 200,000 won/month in 2019; importantly, adjustments were also made to the eligibility criteria and requirements, to allow a larger number of single parents to receive support (Ministry of Gender Equality and Family and Lottery Commission 2020). The purpose of the Single-Parent Support Act is to support low-income single parents to attain a more stable livelihood and improved welfare. Here, single parents include widows/ widowers, divorcees (Korea ratified the UNCRC in 1991, but had until 2008 a reservation to article 9, paragraph 3 which reads: “States Parties shall respect the right of the child who is separated from one or both parents to maintain personal relations and direct contact with both parents on a regular basis, except if it is contrary to the child's best interests.” In the event of a divorce, the child will most often lose all contact to at least one parent, and sometimes to both if placed in a residential facility.), and unwed mothers and fathers who are caring for a child up until 18 years old. (This period is extended in two cases: (1) up until 22 years of age if the child is enrolled at an educational institution and (2) if the child has been serving his mandatory military duty, then this period will be added to time.) Eligibility is determined according to the number of members in the household, income, assets, and savings/investments, and is subject to yearly changes (Lee et al. 2018). After the revision, child care assistance has also slowly increased. Yet eligibility remains very restricted, and since financial independence is impossible to realistically attain, child-rearing mothers remain part of the working poor (Kim et al. 2012; Lee 2017c). The issue of child care assistance has been widely debated among child welfare experts, since the children entering into adoption institutional contexts have often been relinquished by unwed mothers. Arguments have been made to support policy in favor of family preservation rather than family separation. As of 2020, single parents receive 200,000 won/month, 50,000 won more than adoptive parents which should have resolved the child care issue. However, single parents are still greatly disadvantaged in comparison to adoptive parents with regards to medical benefits. Combining all single parents under one piece of legislation incorrectly gives the impression that the absence of the child’s other parent (often the father) is a similar practical, emotional, and social experience for all mothers. In reality, child-rearing unwed mothers’ needs differ greatly from those of widows and divorcees. For them, the abstract concept of stigma and disdain most often translates into job loss and immediate risk of poverty when their identity as a pregnant or child-rearing unwed mother becomes public knowledge at their workplace. Consequently, unlike widows and divorcees, child-rearing unwed motherhood is strongly associated with a change of career and temporary absolute poverty.

4.2

National Basic Livelihood Security System

The National Basic Livelihood Security System was first established in September 1999 in response to the high unemployment rate and growing poverty due to what is

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Table 1 Median income, 2020 unit: won 2020

1 person 2 people 3 people 4 people 5 people 6 people 7 people 1,757,194 2,991,980 3,870,577 4,749.174 5,627,771 6,506,368 7,389,715

Source: Ministry of Health and Welfare (2020)

known in Korea as the IMF crisis (Lee and Kim 2016). The system aims to provide a minimum standard of living to low-income families which are very often the only financial option they have (Lee et al. 2018). The system has undergone several revisions, most importantly in 2014 when it became a “custom-made support system.” Prior to this, eligibility depended on specific demographic criteria limiting eligible service receivers to the sick, elderly, children under 18 years old, expecting women, and those unable to work. In 2014, Korea abolished the poverty line and instead introduced a means testing system based on percentages of the median income and now operates with different income-based eligibility criteria for each of the four key categories of services: (1) living stipend (30%), (2) medical care (40%), (3) housing (45%), and (4) transportation (50%). In 2020, the median income is calculated as shown in Table 1 for 1–7 persons households. The graded eligibility percentage means it will be relatively easy to obtain support for transportation, but much more difficult to be eligible for a living stipend. A two-person family with an income below 1,495,990 won/month (equal to 50% of 2,991,980 won) will qualify for transportation services, but must fall below a combined income of 897,594 won/month (30% of 2,991,980 won) to qualify for living stipend. Consequently, the law has been heavily criticized for failing to actual support families with children (Lee 2017c; Lee et al. 2018; Shin et al. 2014).

4.3

Act on Enforcing and Supporting Child Support Payment

The Act on Enforcing and Supporting Child Support Payment was first established in 2015 after years of pressure and media attention. According to article 1, the purpose of the act is to “create a safe environment for rearing a minor by supporting the enforcement, etc. of the payment of child support” from the noncustodial parent to the custodial parent. (The custodial parent also includes the child-rearing grandparent.) Child support payments rarely happen voluntarily, as demonstrated in the Korean Women’s Development Institute’s triennial reports of single-parent families, the most recent of which was published in 2018 (Ministry of Gender Equality and Family 2018). Among 2,063 families surveyed in 2012, 83% reported never having received child support from the noncustodial parent; this dropped to 73.1% of 2,039 families in 2018. In the same period, the number of families regularly receiving child support increased from 5.6% to 15%. (The media has since 2018 widely reported on the homepages such as “Bad Fathers” and events such as “Bad Fathers and Bad Mothers” where the identity of those not paying child support has been publicly revealed.) Without legal ramifications for withholding these payments, or a pathway

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for the custodial parent to enforce the payments, many unwed mothers have had to give up on receiving child support. With the establishment of The Act on Enforcing and Supporting Child Support Payment the child-rearing parent can now receive practical, legal, and financial support to file for the father’s legal recognition of the child and child support through the Child Support Agency (Lee et al. 2018). In doing so, the agency aims to promote child support payments to better ensure a healthy environment and safe upbringing for the child until the age of 19 years old (Ministry of Gender Equality and Family and Lottery Commission 2020). However, as these KWDI results demonstrate, the percentage of families filing for child support only increased slightly from 4.6% in 2012 to 7.6% in 2018. While unwed mothers are formally entitled to child support, there are numerous barriers to asserting these rights, and applying for child support may entail unforeseen financial and practical repercussions. First of all, for the custodial parent to file for child support, they will need the noncustodial parent to legally recognize their relation to the child. However, when the noncustodial parent recognizes the relationship with the child, he/she obtains ch’inkwŏn (parental right) and with that are eligible to legally challenge for yangyukkwŏn (fostering rights). Moreover, since the family court regards financial stability as a key factor in determining yangyukkwŏn, a low-income unwed mother suing a father with full-time employment for child support, who may even have remarried, may open herself up to a losing custody battle. Second, if the father legally recognizes his relationship with the child, the unwed mother may lose her eligibility for support through the National Basic Livelihood Security System, because she is assumed to be in communication with, and receive support from the father (Lee et al. 2018). (The burden of evidence to prove that there is no relationship or contact between the unwed mother and the child’s father falls on the unwed mother when she applies for welfare benefits. Thus, she may be required to submit a full list of phone calls to verify her claim.)

4.4

Act on Special Cases Concerning Adoption

Adoption is regulated by the Civil Law and the Act on Special Cases Concerning Adoption. Running parallel to the Civil Law, Korea has since 1961 with the establishment of The Special Act on Adoption for Orphans had a law specifically designed to facilitate adoption. The Act has undergone three major revisions in 1976, 1995, and 2011. While adoption regulation does not directly pertain to unwed mothers, there is an intimate relationship between the adoption program and unwed mothers’ choice for their children’s future. With political participation from generations of unwed mothers, some of whom have lost their children to adoption and others struggling to assert their child-rearing rights, the most recent adoption law came to address one key aspect where adoption and unwed motherhood intersect. During the legislative negotiations, child-rearing unwed mother groups and adult adoptees advocated for a 1-month waiting period to be instituted to protect vulnerable expecting women from losing their child. However, a compromise was reached and a 1-week waiting period was introduced instead, as stipulated in Article 13. This

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waiting period is intended to prevent women from relinquishing children prior to giving birth, and to provide them with the opportunity to bond with their child, make an informed decision, and if needed be, prepare for permanent separation. The Act also requires adoption agencies to provide the child relinquishing woman with “sufficient counseling services with respect to what kind of support is available if they raise a child directly and the legal effect of adoption.”

4.5

Act on Registration of Family Relations

The predecessor to the Act on Registration of Family Relations was the Hojuje or hoju family registration system regulated under Civil Law. The Hoju system was introduced in 1953 and was a registration system similar to that of the Japanese koseki, the Chinese hukou, and the Vietnamese hộ khẩu. Under this patrilineal system, individuals were registered under the family head, the hoju. The family head would be the father, and thus women were at birth registered as a member of their father’s household and at marriage as a member of their husband’s household. (Women were not legally prohibited from the position as family head as Koh Eunkang points out “women only inherit the position of family head when there are no surviving males.” However, evident from Mark Peterson’s discussion in Korean Adoption and Inheritance: Case Studies in the Creation of a Classic Confucian Society, solutions to the lack of a male heir were not to simply accept a female heir but rather to add wives or add sons.) In 2005, with a 7-2 decision by the Constitutional Court, the Hoju system was judged not to be compatible with the Constitution, as it violates human dignity and gender equality. Consequently, the Hoju system was abolished on January 1, 2008, and replaced by the Act on Registration of Family Relations. The new family registration system is an individual system which refers to the relationships between wife and husband, parents and children, and other relatives. The legal practice of excluding women as head of family under the Hoju system has been a significant burden for child-rearing unwed mothers. With the child’s father not automatically registering the child on his household, women have had to seek and negotiate other alternatives to registering their child, such as their own father, a brother, or a male acquaintance. Hence, social exclusion from the family has in reality had the connotation of cementing legal barriers to official recognition of the child’s existence, in addition to erasing the woman’s motherhood.

5

Current Social Services for Child-Rearing Unwed Mothers

Legislation as discussed in the section above guarantees support for child-rearing unwed mothers. However, as the social welfare delivery system in Korea is characterized by privatization and high levels of discretionary power among frontline workers, founders, managing directors, and so on, there is no guarantee or standard for the practice, method, quality, or amount of services actually provided. These may

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vary greatly from one facility, agency, and organization to another – and from one point in time to another. While this complicates general descriptive summaries for scholars, it also muddies the welfare market for the service receivers. In general, many of the service providers have religious affiliations and to a large extent rely on private donations. In Table 2, an overview of six different types of government supported programs and social services is provided with details on the scope and eligibility criteria of each: (1) Pregnancy and Child Birth Support, (2) Child Care Financial Assistance, (3) Housing Support, (4) Social Services, (5) Childcare Support System, and (6) Reduced Fees. Pregnancy and Child Birth Support can be found at 22 facilities nationwide, which are known as mother-and-child family welfare facilities (type A in accordance with article 19 in the Single-Parent Family Support Act), and which aims to support basic living including housing and livelihood for a given period of time to women in urgent need during their pregnancy and childbirth. The chapter includes examples of services and programs as offered by Aeranwon. (Aeranwon was founded in 1960 and conveniently located in the northern part of Seoul. While the original purpose was to support runaway girls and sex workers, the focus has for decades been on unwed mothers and today Aeronwon has built a strong network offering a wide range of services. Aeranwon was the first unwed mothers’ facility to focus on child-rearing over adoption and has over the years developed significant expertise in providing child-rearing services.) Child Care Financial Assistance covers a range of programs and financial schemes. The purpose of child care financial assistance is to quickly provide financial support, child care services, etc. for low-income families in sudden need due to divorce, unemployment, and medical emergencies. General income eligibility criteria to qualify is 75% of the median income, while single parents under the age of 24 years old are provided extra support if they fall under 60% of median income. Other single parents must fall under 52% of median income to qualify for financial assistance. Support can be found at 17 facilities nationwide. Also offered is free DNA testing for those planning to file for child support from the noncustodial parent. Housing is an urgent issue for many child-rearing unwed mothers as they are often forced to leave their home. There are three types of housing potentially available for these women. A large number of residential facilities have been established over recent years to accommodate the women’s different needs during pregnancy, childbirth, and child-rearing; these range from temporary emergency shelters to 2–3 years’ residential options. The cheapest independent housing option is a housing unit, where each family pays a monthly rent for a unit or flat in a larger house. The most sought-after, expensive, and difficult housing option to obtain is an apartment in a public high-rise complex. Social Services support single parents on issues such as child support, education, and employment. At the discretion of the individual principal, pregnant teens attending school are often expelled when their pregnancy becomes known or visible. Without a high school diploma, they will largely be excluded from future labor market participation in a country where 97% of the younger generation graduates from high school. To support these women’s education, there are now 16 schools nationwide exclusively

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Table 2 Social welfare services for child rearing unwed mothers Child Care Financial Assistance Eligibility: Income: Below 75% of median income Assets Savings and investments Financial Assistance group 1 (single parent support) Eligibility: Below 52% of the median income and the child is below 18 years old Benefits: 200,000 won/month financial assistance and 50,000 won/month in extra financial assistance (for children below 6 years of age) Financial assistance group 2 (support for youth) Eligibility: Below 60% of median income and the parent is below 24 years old Benefit: 350,000 won/month financial assistance and 1,540,000 won/year to prepare high school GED Immediate postnatal support Available at 17 centers nationwide Support for unwed mother/father and child after birth Free DNA testing Education and culture program Peer group support Other Services Vouchers: Diapers 64,000 won/month, formula 86,000 won/month (eligibility: children under 2 years old) Education for children: Free high school education, free school meals, free after school programs Emergency child rearing support: 200,000 won/month per child for maximum 1 year (eligibility: families not receiving child support for non child rearing parent) Housing Housing 1. Welfare Facilities (Article 19) Mother and child family welfare facility (47) Father and child family welfare facility (3) Unmarried mother and child family welfare facility (64) Temporary supporting welfare facility (10) Single parent family welfare counseling center (7) Child care (no costs) Housing 2. Independent living in housing units Priority over other families on the waiting list 100% subsidy for down payment Subsidy for maintenance cost Housing available for up to 6 years (with review every 2 years) Housing 3. Independent living housing apartments Priority over other families on the waiting list Subsidy for monthly rent No subsidy for down payment No time limit (continued)

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Table 2 (continued) Social Services Child Support In accordance with the Act on Enforcing and Supporting Child Support Payment Educational Support for Young Parents 16 schools nationwide offering middle and high school classes Employment Success Package Program Eligibility: Welfare recipients, single parents and unwed mothers between 18 and 69 years old. 1 year individualized vocational training Free education at designated institutions/programs Childcare Support System Daycare center All children up to 5 years old Priority over other families on the waiting list Subsidy through voucher for private and public daycare centers 240,000 to 470,000 won/month according to the child’s age In home child care Eligibility: Children below 12 years old with 2 working parents, working single parent family, family with more than 3 children, children with parent with disability Full day: 3 months to 36 months: 200 h/month Short time: Up to 12 years: 720 h/year Subsidy according to income Reduced fees Eligibility: Welfare recipients, depending on their percentage of median income National Health Insurance: Subsidy Water bill: Subsidy reduction Mobile phone bill: Reduction Recipient group 1: welfare recipients qualifying for medical benefits Basic subsidy 26,000 won/month Usage: 50% (up to 33,500 won/month) Recipient group 2: all other welfare recipients Basic subsidy 11,000 won/month Usage: 35% (up to 21,500 won/month) Car inspection fee: 80% reduction Source: Ministry of Gender Equality and Family and Lottery Commission (2020) and Ministry of Gender Equality and Family and Korean Institute for Healthy Family (2019) Pregnancy and Child Birth Support Mother and child family welfare facility (A type) (22) (article 19 a) Services • Living support and meals up until 6 months after birth • Support for independent living • Medical support

offering middle-school and high-school classes to pregnant and child-rearing teens. The government also promotes the Employment Success Package Program, although it fails to meet the individual needs of child-rearing unwed mothers.

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The Childcare Support System is essential to allow child-rearing unwed mothers an opportunity to reenter the labor market. Currently, there are different programs available depending on the child’s age and the mother’s needs. In addition, the women are eligible for reduced fees and payments to both the public and private sector when these services are considered essential, such as the national health insurance program, water, mobile phone, and so on. Policies for unwed mothers started with policies for single-parent families. Since 2008, the government has shown a growing interest in child-rearing in alternative families and increased the budget to support these families. One such example is the increase in child care financial assistance which has increased from 50,000 won/month in 2012 to 200,000 in 2020. (2012: 50,000 won, 2013: 70,000 won, 2015: 100,000 won, 2017: 170,000 won, 2018: 130,000 won and 2019: 200,000 won.) Another example is the inclusion of grandparent-headed families in the Single-Parent Support Act of 2007. Policies for child-rearing unwed mothers and teen-single-parents (According to the Youth Welfare Support Act youth is defined as those between the age of 9 and 24 years old. Noh et al. (2015) provides a full table of the concept of the child in Korean law in their book Yebanggwa t'onghapŭ gwanchŏmesŏ bon adongbokjiron [Child Welfare Theory from the Perspective of Prevention and Integration].) have become dichotomized, and there are more services specifically tailored to the needs of each group (Lee 2015; Lee 2017a). The improvement in services is a testament to the political will to support unwed mothers’ child-rearing choice, moving away from decades of focusing on adoption. However, the services fall short of providing long-term support in the form of, for example, vocational training and business start-ups opportunities. Experts in the field have pointed out that the political focus on youth and children under the age of 5 years old fails to provide long-term solutions for these families and address challenges they will meet at a later point in life (Lee 2017c).

6

Unwed Mothers’ Alternatives to Child-Rearing

Unwed mothers keeping and rearing their children is a relatively new phenomenon. Historically, there has been no expectation for these women to actively pursue motherhood; indeed, options to relinquish their children for adoption and abortion have been the norm. The access to these alternatives and society’s preference for these are important aspects of the unwed mothers’ struggle to claim their childrearing rights.

6.1

Adoption

The adoption program has served different social purposes to regulate and minimize the visibility of the marginalized, including mixed-raced children, children with disabilities, and children from broken or socially unacceptable families (Pate 2010). As such, adoption brokers first and foremost sought to establish the

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intercountry adoption program to allow foreigners to adopt more children, and to do so quickly and relatively easily (Kim 1962). Legal scholars today argue that the Korean adoption program has roots in the US immigration system and not the Korean welfare system (Lee 2017b). In fact, the adoption law continues to run separately and in parallel to the Child Welfare Act, which regulates other alternatives such as foster care and institutional care. Despite this, adoption legislation has since 1961 legitimized, reinforced, and perpetuated a culture of relinquishing children for adoption as a morally acceptable and socially preferable choice. The 2011 revision of the adoption law goes some way toward addressing this, through the family court’s oversight of the relinquishment process. Table 3 shows the family background for intercountry adoptees between 1958 and 2018. According to official records, in 104,702 of the 167,547 adoption cases, the children were born to an unwed mother. In the 1990s, more than 92% of all adoptees were born to unwed mothers; in 2000–2010, more than 97% of adoptees were born to unwed mothers. After 2011, the number of unwed mothers relinquishing their children for adoption has drastically decreased. Not only has the family background for adoptees changed over the 7 decades, but the percentage of adoptees whose births were registered as an “outside-marriage birth” has also noticeably decreased. (The statistical category of “outside-marriage birth” includes children born to unwed mothers, unwed fathers, and parents not married to each other.) Registered outside-marriage birth and adoptions in Table 4 below shows how more than 67% of women who gave birth outside marriage between 1981 and 1990 chose adoption over child-rearing. This number fell to

Table 3 Family background for intercountry adoptees 1958 1961 1971 1981 1991 2001 2011

1960 1970 1980 1990 2000 2010 2018

Missing 1,675 4,013 13,360 11,399 225 45 30

Unwed mothers 227 1,304 17,627 47,153 20,654 17,543 194

Broken familiesa 630 1,958 17,260 6,769 1,444 410 3,627

Total 2,532 7,275 48,247 65,321 22,323 17,998 3,851

Source: Shin (2020) Single parents and families living in poverty are included in broken families.

a

Table 4 Family background for intercountry adoptees 1981 1991 2001 2011

1990 2000 2010 2018

Outside marriage birthsa 70,077 76,767 81,000 67,936

Adoptionb 47,153 (67.29%) 20,654 (26.90%) 17,543 (21.66%) 194 (0.29%)

Source: aStatistics Korea and bShin (Shin 2020)

Estimated child rearing unwed mothers 22,924 56,113 63,457 67,742

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26% in the following decade, and dropped further to 21.66% in the period 2001 to 2010. Most significantly, more than 99% of children born outside marriage in the most recent years have not been placed in out-of-home care services such as adoption.

6.2

Abortion

Abortion, in most circumstances, was criminalized in Korea in 1953 in efforts to align Korean legislation with Western legislation in general and US legislation specifically, as a step towards modernization (Hahm 1967). Abortion is punishable with up to 1 year imprisonment and 2 million won for the woman who has the procedure performed, and 2 years for the doctor and other healthcare professionals who conducts an abortion. Despite this, accessing safe abortion procedures is relatively common among women across different ages and marital statuses. According to a 2018 online survey conducted by the Korea Institute for Health and Social Affairs among 10,000 women between 15 and 44 years old, 3,792 (38%) reported having been pregnant and a total of 756 of these women had had an abortion. That is, 19.9% of the women who reported having been pregnant had also had an abortion. Among these, 682 (90.2%) had a surgical abortion performed only, while 74 (9.8%) used medication. For 53 women, the medication did not have the desired outcome and they sought additional support from medical professionals. Most of the women (46.9%) identified as unwed, 37.9% reported they were legally married, and 13.0% were living with their partner. The remaining 2.2% of the women were separated, divorced, or widowed. Regarding their reasons for abortion, responses were roughly equally spread among the following three answers: (1) interference with social activities such as work or study (33.4%), (2) economic difficulties (32.9%), and (3) unplanned pregnancy (31.2%). The number of abortions and percentage of women having had an abortion performed has decreased from 342,433 (29.8%) in 2005, to 168,738 in 2010, and 49,764 in 2017 (Kim et al. 2018a). Importantly, this survey was conducted at a time when Korea was debating the constitutionality of abortion. As of April 11, 2019, 7 out of 9 judges ruled that outlawing abortion is unconstitutional and the congress was given until December 31, 2020, to revise the law. The current ban on termination after week 20 will remain in force.

7

Conclusion and Future Directions

The struggles of unwed mothers in general, and child-rearing unwed mothers specifically, have long been regarded as the outcome of individual failure or compromised moral character. Unwed motherhood has been considered a breach of social norms – and because transgression of social norms is perceived as indicators of questionable moral character, unwed motherhood has become associated with unacceptable and morally depraved behavior. Understanding the issues faced by

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unwed mothers through the framework of social exclusion steers the focus from individual behaviors to the complex historic and ongoing social and legal processes that have led to their entrenched marginalization and liminal status in Korea. As noted above, their social exclusion is compounded by the social stigma they encounter in their everyday lives and in interactions with institutions and public officials – and the internalization of these negative stereotypes. Deeming unwed mothers unworthy has justified ostracizing them and their children from their immediate social and professional networks. Indeed, for unwed mothers, a key factor that leads them to question their child-rearing choices is the lack of social and emotional support (Yang 2012). In the search for further improvements for child-rearing unwed mothers, it is important to keep their political relevance – and irrelevance in mind. While all political achievements are arguably products of numerous independent events, most have been the outcome of sustained movements for social change. Here, the advocacy organization KUMFA has played an important role, creating a platform for child-rearing unwed mothers to support each other and to engage with wider society to further their unique interests. Yet the one social change or factor that propelled the issue of child-rearing unwed mothers onto the political agenda in the early 2000s was Korea’s demographic trends rather than a collective consensus on the rights of child-rearing unwed mothers. Political interest and attention to child-unwed mothers and their children increased at a time when Korea faced a historically low fertility rate. The Korean fertility rate first fell under the total fertility rate of 2.1 in 1983, when it was recorded at 2.06. In the ensuing years, the fertility rate has further declined, dropping to 1.08 in 2005, and 0.92 in 2019. In other words, the political will to address issues faced by unwed mothers and their children has been driven by imminent demographic challenges rather than widespread support and acceptance of these families’ rights. Moreover, social exclusion continues. As such, child-rearing unwed mothers remain a stigmatized minority and after brief intensive political attention have become a welfare blind spot. They are not quite able to provide for themselves and their children, yet not poor enough to qualify for comprehensive welfare benefits. This welfare blind spot has been recognized as a growing problem in Korea since 2014, when the issue was brought to public attention with the suicide of a mother and her two daughters, who were at the time living in a basement apartment. (Living conditions not much different those experienced by the Kim-family in Bong Joon-ho’s 2019 Oscar winning movie Parasite.) Eligibility for social welfare benefits are so stringent that many women will not be eligible for comprehensive living, housing, medical, and educational benefits, which means many of them will have no choice but to rely on support through the Single-Parent Support Act and donations from private organizations and religious groups. Administrative barriers also exist, with regard to applying for and meeting different criteria for different categories of services. Longer-term support for unwed mothers and their children – particularly once they reach the age of 5 – remains lacking. Legal and financial concerns can also impact women’s ability to apply for and access certain payments, such as child support, which requires the

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assignation of parental rights to noncustodial parents, entailing potential loss of custody. The inclusion of unwed mothers and their children on the political agenda should be read as significant. Indeed, there are a range of social welfare programs and benefits available today, which was not the case 10–15 years ago. However, while acknowledging these improvements, it is also important to note that efforts to promote and protect unwed mothers’ child-rearing rights have fallen short of addressing the underlying social stigma this family composition faces. Unwed mothers continue to face discrimination on the personal and familial level, as well as in interactions with healthcare providers, educational environments, workplaces, public officials, and privately run social welfare programs. These experiences can amplify and reinforce the internalized stigma they already face, and which cause them to constantly question their child-rearing choices. If social exclusion requires alleviation by meaningful participation – rather than simple “inclusion” – then the importance of reducing social stigma alongside providing adequate and accessible social welfare services and special law provisions becomes clear. As defined at the outset, social exclusion is understood as entailing the limitation of individuals’ participation and sense of belonging in their society, the social contexts in which they strive to create livable lives. Therefore, central to unwed mothers’ rights is a commitment to creating the social and legal conditions for unwed mothers and their children to achieve meaningful current and future social participation. Also key is understanding how various policies and laws have historically distributed, and in some cases reinforced, unwed mothers’ social exclusion. By contextualizing the issues faced by unwed mothers, and by outlining the current services available to them – including practical barriers women face when accessing these – this chapter offers a temporal perspective that sheds light on how and why social exclusion persists. Acknowledgment Author Dr. Gustafsson acknowledges the financial support provided by the Academy of Korean Studies (Project #: AKS 2019 INC 223000X)

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Social Exclusion and Transgender People in Spain

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A Multidimensional Perspective Luis Miguel García Rondo´n

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Impact of Exclusion on Transgender People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 The Triad of Social Exclusion: Gender, Identity, and Interculturality . . . . . . . . . . . . . . . 2.2 Hate Toward Transgender People as an Obstacle to Inclusion . . . . . . . . . . . . . . . . . . . . . . . 3 The Impact of Social Exclusion in Spain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Analysis of Categories of the Social Exclusion Process in the Group of Transgender Persons in Spain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

In this chapter, the processes of social exclusion in the group of transgender people in Spain and the connotations that limit their status as full citizens are discussed. This situation is organized within a structural and legal framework that does not meet the needs of trans people. This is a social reality, which requires a comprehensive strategy to address its underlying structural, cultural, intersubjective, and intersectoral dimensions. According to this, the spectrum of forms of exclusion is wide, ranging from physical and symbolic violence to lack of employment opportunities, invisibility, and gender resistance, due to the break that this diversity represents with the heteronormative patriarchal model. These practices imply complex conditions of social, political, economic, family, and labor vulnerability, which are configured as subjective experiences that can influence the identity construction that transgender people make of themselves, characterized by the dissociation of social ties, disaffiliation, and the fragility of the relational network. For this reason, they are characterized by significant L. M. García Rondón (*) Department of Social Psychology, Social Work and Anthropology, University of Malaga, Malaga, Spain e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_49

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multidimensionality, with forms of ethnic, racial, socioeconomic, and sexual subordination. These transactions can give rise to exclusion, because they have a differentiated cultural origin and even identity, as male identity is more censored. Finally, there are many categories that generate social exclusion, which make up a meta-variable formed by economic, labor, social, cultural, gender, and health factors. In their interaction, how the processes of social exclusion occur to a greater or lesser extent in the trans community and their intensity will be explained. Keywords

Transgender · Gender · Social exclusion · Intersectionality · Identity

1

Introduction

This chapter discussed the processes of social exclusion in the group of transgender people in Spain and the connotations that limit their status as full citizens. However, it is essential to provide a conceptual approach to the multidimensionality of social exclusion here. The origins of the concept of social exclusion occur in the 1870s, being defined for the first time by the author Leoir (1974). Later on, it was quickly disseminated on the European scene by Delors, both in the academic-scientific and in the political-institutional fields, in a way that preceded social policies (Rubio Martín and Montero 2002). At that time, social exclusion was associated above all with the concept of unemployment and the instability of social ties, thus making the first approaches to the concept (Obradors 2006; Subirats 2004). For that reason, the term moves in an axis that goes from this first French reflection that links it to the rupture with the social bond, as opposed to the sociological theory of Durkheim, that gives a closer interpretation to the English vision which emphasizes the situations and causes of exclusion. Thus, the British, in a simplified way, emphasized material deprivation and social rights as pointed out by the French, reformulated as an ability to exercise these rights in the face of barriers to participation and social opportunities in society (Silver and Miller 2003). As a starting point, we adopted the definition proposed by the European Union, which gave a name to a phenomenon that needed to be analyzed and understood, before the new social changes that were propitiating situations in citizens that without necessarily being marginalized, remained on the margins of society, due to a set of social factors that make citizens out of society. In spite of the intense lines of research developed, a terminological confusion has arisen and it links social exclusion to the concept of poverty, often used as synonymous terms, without there being a consensus in the dialectic of both. This was due to the extension of the need to overcome the economicist orientation of poverty to include the dynamic, multidimensional, and heterogeneous nature of the phenomenon (Hiernaux 1989). In this sense, recourse to the concept of social exclusion, as expressed by Pérez Yruela et al. (2002), is not merely a question of nominalism. It is a question of

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knowing more rigorously and in-depth the social situations traditionally limited by the most classic concepts such as poverty, indigence, or marginalization. Continuing with this idea, the subsequent findings of the multidimensionality and complexity presented by social situations in the population sectors approached the current notion of exclusion. These situations are not exclusively generated by lack of income. A more all-encompassing approach is needed. We agree with Subirats (2004) in revealing social exclusion as an extraordinarily useful strategy to talk about all those situations in which, beyond economic deprivation, one suffers a deprivation of the very idea of citizenship, or in other words, of the basic rights and freedoms of people in conditions of equality, without distinction. In this sense, a transgender person is a full citizen, in addition to being in their own right because of the civil rights and conquests that this implies, such as having guaranteed social rights that allow them to live in conditions of equality, like other citizens. Thus, social exclusion is a holistic aspect; it is an accumulation of problems of various kinds that hinder normal social development. It is an integral concept, which can take shape in any of the basic vital areas of the person and which presents numerous characteristics, in which we do find some coincidences (Laparra 2007). Thus, and with the support of the discussion of the social scientists in the last two decades, we break down two key or characteristic aspects of social exclusion: First, the structural character that refers to the social imaginary which affects the totality of the population (Karsz 2004). The social stratification, in which some people have the power and others are left on the margin, produces inequalities both at the highest end with the lowest of the social scale in the up/down dichotomy. Besides, it marks notably the distance between those who participate in its dynamics being inside and those who are rejected toward the margins (inside/outside) of the social structure (Vidal Fernández 2006). In this discourse, the weight of the circumstances occurred, no matter how confusing they are, do not place the individual in a passive position. But rather, it is these circumstances that conform the trajectories, with their plot, those that have more weight than what is frequently attributed (García Roca 2006). Second, another of the characteristics is its multidimensional character, since numerous dimensions and variables intervene, an aspect in which most of the authors converge. These dimensions include: a structural or economic dimension, referring to the lack of material resources that affect subsistence, derived from the exclusion of the labor market; a contextual and/or social dimension, characterized by the dissociation of social bonds, the disaffiliation and the fragility of the relational framework. We suggest, then, that social exclusion is composed of several closely linked and interrelated dimensions that affect each other. These dimensions embrace health, access to the labor market, housing, social networks, participation, and the legal or political system. To this, we add the specific dimensions of gender, identity, which are appreciated in this group and even the cultural one, since a large number of them are immigrants, especially Latin Americans in the case of Spain. It would also be

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necessary to refer to social relations, social and political participation, as possible factors that influence a person or a group to be in a situation of social exclusion. This multidimensional approach requires comprehensive actions, which reach each of the dimensions, and implies the implementation of coherent strategies and synergies adapted to the particularities of social situations. In line with these epistemological debates, if we place ourselves in the current time and space, it becomes plausible that the labor market and the social structure itself excludes more than those with these differences, due to the dominant, heterocentric, and patriarchal inclusive model that prevails in the neoliberal society. Together with the three characteristics of social exclusion described above, it can be seen how exclusion, from its very beginnings, is an eminently political concept that allows, on the one hand, the stratification of the population, and on the other, the identification of specific needs that specific groups have. For this reason, some researchers point out that exclusion is also analyzed as the result of active discrimination based on prejudice against specific social groups because of their ascriptive characteristics, personal circumstances, or lifestyles. The emphasis is on the denial of opportunities. The differentiated behaviors of the majority group further reinforce and stigmatize exclusion, eliminating the few existing possibilities to overcome it (Laparra 2007). This is a key aspect to understand the magnitude of exclusion in transgender people, its specificity, and the bonuses or particularities that this social difference entails.

2

The Impact of Exclusion on Transgender People

Social exclusion is a common aspect of the lived experience of many transgender people. The concept serves to put a name to the discrimination suffered by people who have been placed within the boundaries of homosexuality and socially censored, being outside of social institutions, including being excluded from the rights associated with citizenship (Ocha 2013; Fish 2010). On the other hand, transgender people might be a transgression of the gender norms established by society (Moolchaem et al. 2015). We are referring to the break with the patriarchal model of new gender models that do not follow the guidelines established by social norms and have such a complex social, family, and work history. This can be offensive to the power groups and the gender resistances that the system has. Continuing with the analysis, we can link these political elements with the conception of democratic citizenship, which is a guarantor of equal opportunities. For Rubio Martín and Montero (2002), the concept of social citizenship requires the construction of citizenship with rights to the inclusion of all people regardless of their origin, economic situation, gender, identity, or personal situation. The consideration of citizenship implies that states must resolve the exclusionary dynamics that promote the exclusion of certain members of society (Van Parijs 1992). For a better understanding of the arguments constructing here, it should be noted that social exclusion is also a phenomenon through which othernesses are delegitimized. These experiences of exclusion have been homologated as processes

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of stigmatization from which a subject or social group is characterized negatively (Goffman 2010). Stigma sometimes takes hold of transgender people and makes them to integrate it into their daily behavior. This is also known as insight, when the individual captures, internalizes or understands, a truth revealed from the heterocentric social structure, patriarchal and Western cultural hegemony as its own, and may trigger over time in a more severe self-exclusion. It is a social exclusion from outside to inside when these individuals assume their differential status and internalize the different position granted by the dominant society. Stigma is a deeply discrediting characteristic and implies a double perspective: on the one hand, that of the discredited person, whose difference is known or immediately obvious – physical appearance, ambiguous gender symbols; and on the other, that of the discreditable person whose divergence is not immediately known or detected, and is purely symbolic. This is the moment when rules and social expectations play a determining role. According to Coleman et al. (2012), the world professional Association for Transgender Health (2010) suggests that “the expression of gender characteristics, including identities, that are not stereotypically associated with the sex assigned at birth is a common and culturally diverse fact. The human phenomenon which should not be judged as inherently pathological or negative“ (p. 168). However, transgender people tend to be treated negatively and regarded as strangers or socially marginalized because they transgress the binary norm of gender. Therefore, it is likely that these individuals experience various forms of social oppression characterized by difficulties and complexities. But this stigma is not only an externally induced process, it is also internal to the reference groups and intragender. There is resistance to social interaction and bonding with trans people even in other sexual differences that might share common values, such as homosexuals. Blair and Asley (2018) show the pervasiveness of cisgenderism and transmygenderism in almost all gender choices, identities, or diverse sexualities. They conclude that cisgender people are more likely to exclude trans people from their groups. In contrast, people who identified themselves as bisexual, queer, trans, or non-binary are more likely to indicate their willingness to date a trans person, and men with male identities. This reflects a clear pattern of male privilege and trans-female exclusion, because misogyny and patriarchy are in the collective unconscious of all men, regardless of their sexual orientation. The misogyny outlined above also extends to the acceptance of the identity of the other, as it is more censored to change toward the female gender. In Blair and Ashley’s study (2018), the participants were disproportionately willing to date trans men, but not trans women, even if doing so was contrary to their sexual and self-identified identity. In other words, trans women are externally overestimated for their bodies that can be bought and sold, but they do not want a commitment, only superficial contacts. On the other hand, if a person is transformed into a man, everything changes. As suggested, for most transgender people, it is difficult to find a partner who would be willing to commit to a long-term relationship, due to sociocultural norms and laws that considered this type of relationship to be transgressive, being beyond heteronormativity (Khan et al. 2009; Melendez and Pinto

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2007; Ocha 2013). To this misogyny, some researchers point to an additional element of exclusion related to cultural diversity and symbolism, which is double discrimination in the community and affective affiliation based on gender and non-white person. The intersection of the deviation of gender norms and femininity based on whiteness means that women of color face disproportionate levels of violence, both in public and private spaces (Noack-Lundberg et al. 2019). This leads to feelings of uncertainty in family life and the assumption that they are only an object of sexual exploitation. This family disaffiliation is undoubtedly an important factor as a generator of social exclusion (Melendez and Pinto 2007). The processes of social exclusion in the group of transgender people have significant multidimensionality and have ethnic, racial, socioeconomic, and sexual connotations. These reflections have been of academic, social, and political interest in recent decades. There is an unusual interest in approaching non-hegemonic forms of sexual expression, which have historically been socially marginalized because they have been identified with deviance and abnormality, constituting othernesses that have not achieved full recognition, as is the case with transgenderism. Hence, the spectrum of forms of exclusion of which transgender people are victims is wide: from physical violence (Mondragón 2009; Rivera et al. 2013), through insult, to lack of employment opportunities (Lombardi et al. 2001). These practices imply conditions of social, political, and economic vulnerability, which are configured as subjective experiences that can negatively influence the identity construction that transgender people make of themselves. This is where the transit of gender begins (Nakamura 1998), as well as key socialization processes in the construction of identity. The research antecedents show in an incipient way, that exclusion practices toward transgender people take place in the different social spheres (Beemyn et al. 2005; McKinney 2005; Rankin 2003). Along with these factors, the chapter alludes to other relative factors that are shown in the casual attribution of social perceptions. This is the case of the impact of stigma on exclusion from the health system. Sexual and gender minority groups generally have to deal with different mental and physical problems, which are called minority stress, with a high psychological impact on the disadvantaged position these people suffer, which is shown in daily interactions and micro-aggressions. It is crucial to mention the social discrimination and family rejection that affect the mental and emotional health of these groups, reducing the potential of endogenous resources. The fear of being stigmatized by society and the resulting stress could be reduced by the social protection and emotional cushion provided by the family. There is weak socialization in these agents since the family socializes in roles that may be different from the identity of the transgendered individual. There is no other social reference model or pattern for learning to live in a society according to one’s sexual identity, regardless of the physical condition of the gender role adopted at birth. Based on these considerations, Honneth (2009) states that the individual is in a permanent search for social recognition. Such search for recognition would allow the person to establish relationships in which his or her qualities and capabilities are accepted and socially validated, which would enable a satisfactory relationship with

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others and with himself. However, when this recognition is denied and replaced in turn by a series of experiences of rejection, non-acceptance that undermine the condition of the person, he is pushed to a continuous struggle to demonstrate his worth. Thus, social relations and the appreciation of certain ways of life will determine how the person configures an image of himself. This conceptual framework establishes a relationship between theory and the current situation of some minorities, which promote struggles and claims for their autonomy and identity. These struggles have grown and strengthened in the international scenario. In the case of Spain, in recent decades, it has been driven by new normative developments, which within a short time have begun to have a certain pedagogical effect, albeit at a slow pace. The paradox is that the values relating to equality in the gay and lesbian collective are advancing more than in transgender people, who are slowing down due to the resistance of the patriarchal systems and the very radical break with the dominant male model that these proposals represent.

2.1

The Triad of Social Exclusion: Gender, Identity, and Interculturality

In light of the foregoing arguments, this chapter denotes a structural construction of transsexuality, in a complex network of proposals that establish a hierarchy concerning sex, gender, and identity, forming a triad with continuous feedback. The legal and social discourse on sex, gender, and identity work in parallel with, but far from, the movements and proposals of trans people. We are faced with an ontological field that is both pragmatic and political, a social action that is changing with slow transformations that are far from the long-awaited pace of social change in the corollary of these social sectors. The direct discrimination referred to is superimposed on the discrimination that hinders complete social emancipation, by decoding the mechanisms that are often hidden behind the cultural and social rules of everyday life, with invisible and symbolic aspects underlying them (Takács et al. 2008). Along these lines, I argue that the exclusion of transgender people cannot be explained without explaining identity and the cultural issue as specific variables, as they are interrelated and represent pluses of social exclusion, which limit the options toward the path of social inclusion. It is transcendent the cultural diversity and the multiple identities that make up the new Spanish reality, which is increasingly heterogeneous and has more complex identity carriers. Thus, it is eloquent as a central theme of this chapter, the term intersectionality, proposed by Williams (1994). There are many dimensions and transcendence of this idea, but to focus on the subject entrusted to this text, we are interested in the dimension that refers to how the exclusion pluses and the differences interact as a metavariable that hinders the full social inclusion. It is a complex system of multiple and simultaneous exclusionary structures: sexism and anti-gender ideas are explained by the dynamic intersection between gender, sex, ethnic group, and social class. These transactions can give rise to exclusion pluses because they have a differentiated cultural origin and even because of identity since male identity is more censored than female identity. It is

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also threatening for certain power and conservative sectors, the construction of female identity from a woman’s body. I have seen in the accounts of my field research over two decades that some people behave in social circles as female homosexuals to be more accepted because the trans identity is in the last link of LGTB+ social exclusion, often relegated to the most absolute social marginalization. The intersections of gender, social class, ethnic group, and identity converge as an atomized vector leading to social exclusion. And of course, the class position also has an influence. It is not the same to be a Member of Parliament like the transgendered Spanish Member of Parliament Carla Antonelli, as it is to be a person with scarce resources, a transgendered person and an immigrant. I also consider the dialectic between gender and interculturality to be of interest as an interdependent binomial when analyzing social exclusion. Along with these facts, even more specificities converge that act as additional or added mechanisms of gender discrimination, heterosexism, such as age or ageism, status, and class behavior. On many occasions, these women are not only discriminated because of their transgender status but are also stigmatized and despised because they belong to an inferior state, are poor or have a marginal job, or simply because they openly display their symbolism (Rondón and Romero, 2016). All this is due to the heterocentric society in which we live, where we are socialized for the construction of social rules from a prism of power of heterosexuality, with a clear cultural and symbolic hegemony over the rest of the genders and differences (Fraser 1997). It is a dynamic process in which different exclusive factors associated with it can cause an obvious social disadvantage in comparison with the rest of society and influence their quality of life. These barriers also show up in social relations, communities, and social institutions, all of which prevent their full participation (Pattnaik and Mohanty 2014). Gender, power, and society cannot be separated from each other. If gender is a construction, to dispense with social interaction as a study tool would be a mistake. The intersectionality examines how different systems of privilege and oppression generate experiences linked to a particular group. Each identity is represented by class, ethnic group, sexual orientation, religion, and even gender, which become an implicit hierarchy that determines how visible and valued personal experiences are in their social context. These identities and hierarchies are intertwined in the way and condition in which a person can subsist in society (Viveros Vigoya 2016). This theory starts from the formalization of a critique of the models of gender inequality, which resulted in a social and operational force that can be used as a mechanism to break down the gaps in the duality of men and women at the level of the state, the family, and legal structures in general (Grabhan 2008). This is a more structured way of thinking, which allows the factors that generate inequality, identity, and sexuality to be developed and compiled. Thus, the excluded people are subject to multiple and interrelated forms of subordination. In the trans community, the same thing happens. The political direction that gender has taken is an unquestionable element. Transsexuality is no longer an identity that is widely accepted to become selective and exclusive in important cases. In other words, trans people who are successful in the catwalks, in the digital media, or politics will not be treated with the same singularity

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as those who are dedicated to the street sex trade with visible hormonalization stagnation. For this reason, the intersectionality convinces us that analyzing gender in isolation without trying to consider all the other elements that induce people’s perception in society is both ineffective and unproductive. Understanding intersectionality is of academic importance not only to political figures in human development but to any social actor. But the intersectionality goes much further and attempts to explain the relationships between sociocultural categories, phenomena, and identities. Ethnicity is mixed with gender and shows the intersectional complexity between the national and the normative custom of femininity/woman and masculinity/man. Therefore, the use of this concept is connected with the question of power inspired by Michel Foucault, since it is introduced as a procedure of exclusion and inclusion, questioned within the practices of normalization, homogenization, and classification of being (Lugo-Ortiz 2011). These procedures of exclusion classify, reject, welcome, and order the production of useful discourses for power. The focus of power in the theory of intersectionality concerning the trans community may be related to category discrimination in the Foucaultian sense. Power should not be seen only as a question of suppressing identities, but as a productive act that compromises knowledge with the imposition of truth. Precisely, there are certain paradigms about the trans community replicated in universal realities that even seem parallel. Vertical segregation, crime, and sex work are recurrent discourses that form a truth revealed in the trans-female population. Exclusion implies making invisible the groups that are supposed to be uncomfortable for certain groups of power. In this line of thought, Bourdieu points out a perpetual interaction between the dispositions socially inculcated in man – habitus – and the social field that is structured by relations of symbolic domination. The symbolic powers are of unquestionable importance when we trace political projects of belonging in the speeches directed to the historically excluded people (Bolaños 2016). This section cannot be concluded without reflecting on a concept of great lucidity and clarifier about this discourse, the social intersubjectivity. As Foucault (2009) points out, there must be harmony between the field and the habitus so that there can be a social order, which depends mainly on the will of the agents to respect and follow the dominant regulations and imposed rules. Because of this interaction, symbolic capital plays an important role alongside symbolic violence. As an alternative to this symbolic and social violence, Butler (1991) addresses the deconstruction of oppressive power relations, which can be perceived in the language and practice of identity and gender discourse. Butler focuses on the deconstruction of heteronormativity imposed by heterosexuality and considered as natural, essential, and moral, devaluing other options of sexuality (Moon, 2008). These discourses dominate our thoughts and interactions, establishing the binary dialectic between men and women, with clear invisibility of gender in all dimensions, including trans, which operates in our unconscious, in our mental processes (Livingstone 2010). As a result, there is disaffiliation within these environments, conditioning the social bonds to be included. This is experienced with a certain resignation by the collective,

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socialized to accept heteronormativity as normal or superior, to allow and justify possible oppression toward different options. It is a social and cognitive construction that introduces everything different from the heterosexual as deviant or intelligible (Butler 1991). It is obvious that new forms of fighting injustice in minority groups allow social resistance to leave political correctness aside and to seek rational notions of the subject and subjectivity (Pérez-Garzón 2019). The political alignment proposed by pro-sexual diversity policy is a double-edged sword. The big problem lies in the fact that various sectors seek to empower the trans community and not true collective empowerment. The intersectionality must be oriented toward recognizing oppression far beyond a sexist practice and seek to intertwine those problems that are alien to citizen knowledge. Likewise, the generalization of the transfeminine community for all trans identities is another form of sociocultural discrimination (Criado de Diego 2011). All these mechanisms of exclusion arising from prejudice and ignorance, which over time are triggered into action, are plausible in some practices of the growing hatred for these groups, with isolated but increasing episodes of psychic, virtual, and even physical violence as we will develop below.

2.2

Hate Toward Transgender People as an Obstacle to Inclusion

Following the above analysis, I argue that sexual and gender biases limit full inclusion and might lead to undesirable situations that eventually become plausible in hate crimes. As a result of his empirical study, Herek (2010) introduces the notion of felt stigma. The author concludes that this type of stigma is related to experiences of previous violence, which makes these subjects more vulnerable to future situations. In the same vein, and as a result of scientific evidence, Lombardi and Bettcher (2014) have reported that trans people are frequent victims of violent behavior, both physical – assaults, rapes, assaults – and psychological, as well as economic or social discrimination (see also Moolchaem et al. 2015). This reinforces the inference about the noticeable vulnerability of transgender people in different areas – social, labor, economic – and the lack of rules to protect this population. With some frequency, abusive treatment coexists as normalized practices, because within a maledominated society, it is mistakenly seen as something cultural and not as the chain of a crime. This has an adverse effect on the health and safety of trans people. If we look at the Spanish context, there is still a certain ambiguity in the incipient legislation that regulates these situations. Not all crimes that an LGBT person may suffer will be considered hate crimes, simply because the victim belongs to this group. In order to be considered as a hate crime, it must be proved that the reason for the crime is the victim’s membership of the LGBT community or an activity associated with it. This fact, due to its abstract nature, is limiting the defense of the victims and does not take into account the particularities of the identity, giving priority to the crimes according to the sexual orientation. Some examples for a better understanding of the classification of these criminal situations are given here. If a transgender woman with a female identity leaves her car parked in the street and on

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her return finds that a window has been intentionally broken, we would be facing a common crime of damage, since no evidence indicates that the breaking of the window was motivated by sexual identity. On the other hand, if she leaves her car parked in the street and on her return she finds that a window has been broken intentionally and a qualifying adjective has been written on the door related to her identity, we would be facing a crime of damages with the aggravating circumstance of article 22.4 of the Spanish Penal Code. This rule hardens the punishment when the crime has been committed because of a prejudice toward the victim, in this case, because of her orientation, not because of her identity. This makes some people feel defenseless and exclude themselves with resignation to this manifest violence, which crystallizes into a distrust of the institutions of reference. In addition to these legal and institutional factors generating exclusion, there are also underlying external circumstances caused by the following social barriers: • Lack of training for professionals who have to ensure security and deliver justice. • Lack of knowledge of the number of facts reported: a reliable registration system and a prosecutor’s office specialized in these matters are essential. • Standardization of these practices and lack of knowledge of specific rights. • Fear of revealing one’s identity and of possible reprisals or social censorship. The impact of these factors induces an additional element in people with male or female sexual identity. Sexual identity is a relatively non-visible stigma, which is hidden to avoid social rejection. The lack of specific socialization and social and community disaffiliation means that these people do not reach the category of subjects. Therefore, we must take into account their complex relationships with other socio-structural characteristics. To improve their social status in the interest of equality, a series of actions are required to enable the inclusion of trans people in society as subjects of rights, in order to build new inclusive citizenship. To the above story, I add the symbolic, invisible violence that acts as barriers to full social and community life. Here, I refer to direct violence, which is incompatible with freedom of expression, and indirect violence that the law does not combat, which has hidden discriminatory components that make it more difficult to identify. It is indirect and invisible violence that is most deeply rooted in the structure of society when it is built on beliefs and values that are strongly rooted in the presumption of cisexual supremacy, with a greater prevalence among women with a female identity. They are in turn victims of resistance that rebels against gender advances in all dimensions of this meaning. In the construction of the preceding arguments, I have analyzed the state of the question to understand the endogenous and exogenous factors that are the basis of the reason for social exclusion, is a common phenomenon in most parts of the world. These discourses lay the foundations for the gender biases and mechanisms of inequality present in the social and cultural structure of the entire Western context. But in particular, we deal with the specific situation of the Spanish case, since the specific objective of the present chapter has its idiosyncrasy and endemic socialcultural aspects.

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3

The Impact of Social Exclusion in Spain

In Spain, there are no official figures or statistically reliable sources for accurate quantitative data on the number of trans people. However, the associations estimate that there are more than 10,000 transgender people in Spain, representing a low percentage in Spanish society as a whole. Due to the terminological confusion between transsexual or transgender, that is, according to the social and medical views, along with the rigid regulatory protocol, it is estimated that this number may be more than twice. To this, we add the invisibility of the collective. In order to have more accurate numbers, it is necessary to overcome the paradigm of social binarism, to broaden the conceptualization between men and women to identify what the fluid gender is like, and even the third gender, since there is a good number of people who are not officially registered. Once this terminological precision is made, we proceed to explain the different factors that generate social exclusion in Spain, I analyze the discursive trajectories of the main categories that give rise to these processes: legal situation, health, social, labor, family, and so on. I begin with the legal category that is necessarily linked to the rights of health and identity. In the Spanish context, four decades ago, transsexuality was decriminalized and two decades ago, this situation was depathologized as an illness. In this scenario, and although the relationship between normative and social advances is not automatic, trans groups began their work to self-determination for trans identities. This proposal for progress means letting trans people decide their identity without being tutored by others. Substantially, normative development has been considerable in the last decade, although this does not always translate into a pedagogical and social impact. At present, there are normative developments that deepen the two principles we have outlined in the preceding paragraphs – depathologization and self-determination. The Gender Identity Law of 2007, which was born as a pioneering law, has made it possible for trans people to change their name and legal sex at the Civil Registry so that it appears on their official documents as they choose. However, it establishes some requirements that are considered pathological: a medical diagnosis of gender dysphoria and that the person has been treated with hormones for at least 2 years. Only then did this law allow these people to change their name and sex. In other words, the bias continues with the confusing sex/gender binomial that resists consolidating trans-selfdetermination as a social change. However, with the development of the Law, these requirements are eliminated and an unprecedented social advance is regulated, in line with the demands of the LGTBT+ community. Subsequently, it is typified that gender identity must be self-perceived and freely determined by each person. The right is also extended to minors and persons who do not have Spanish nationality. However, this is progress that still does not recognize society as a value of its own, being the object of continuous and dichotomous tensions and polemics, regarding minors. This represents the usual difficulties that are produced in the transit of the transformations to the social change, with the obstacles that imply in their final phase, as Nisbet indicated in the classic work the social change (1991).

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There is a specific issue in this regulatory development. We are referring to the legal progress that is being made at two speeds, due to the transfer of powers to the autonomous governments, resulting in a country that is advancing at two different rates: on the one hand, the territories that take up the baton of the latest recommendations regarding identity develop them and put them into practice in the administrations, registers; and on the other hand, the autonomous communities that do not regulate or obviate these proposals. Thus, depending on where a trans person resides, he or she will have some rights or others, hence the tendency to concentrate population density in the places with the most rights, especially in the case of people from different cultural backgrounds. Thus, with this asymmetrical normative advance, the right to self-definition, which is the starting point, is slowed down and continues its obstacle course. But regardless of the deficiencies noted, in general terms and in a substantial way, the basis of the autonomous norms contemplates the right to free selfdetermination: that is, that each person freely constructs his or her definition of his or her gender, sexual orientation, sex and body. This means that it should be determined only by a psychological or medical report that accredits gender identity. The Canary Islands (2014) and the Basque Country (2012) are the only two communities with trans or LGBTQ laws that do require this. The text is similar in the wording of both laws, requesting a psychological report that certifies that the person lacks pathologies that mislead him/her regarding the gender identity that he/she manifests; that he/she presents an equally stable and persistent dissonance for at least 6 months; between the morphological sex at birth and the gender identity. Some social movements continue to consider these advances insufficient, because they deny the political subject the capacity to be a subject of civil law, by not unanimously considering free self-definition in all territories, and indirectly treating transgender and intersex people as a pathology subject to medical or psychological prescription. The same occurs with specialized hospital units, an old model that stigmatizes the group. The needs of trans people are the same as those of cisexual people. Specific treatments must be demystified. In response to this, the State Federation of Lesbians, Gays, Trans and Bisexuals is committed to combining both models – integrating them into general women’s services or specific units – depending on the case or specific situation. They also demand specific services for non-pathologizing trans people. Another notable factor is exclusion from work and employment. According to the data, which we now and henceforth use from the Community of Madrid’s Attention Service for Homosexuals, Bisexuals and Transsexuals (2019), in many cases, these people have not received the contributory retirement pension because they have a career in unrecognized jobs. Besides, the unemployment rate is very high, being twice as high as the rest of the population, representing 55.5% in trans men and 53% in trans women. If we stick to the occupation, in general, they are dedicated to unskilled jobs, jobs related to beauty, artistic, and directed to this sector, being almost nonexistent the directives. The data are quite eloquent in this vector of exclusion.

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With a pragmatic and clarifying intention, the following section studies the categories that generate social exclusion, following the preceding discursive analysis of the trajectory of these processes of transgender people in Spain.

3.1

Analysis of Categories of the Social Exclusion Process in the Group of Transgender Persons in Spain

Taking as a reference the social exclusion dimensions of the Economic and Social Council of the European Union (1993), we describe each of them below, applying them to the specificity of our study group. They are categorized according to the social and cultural background of this population group. These social categories represent social units, considered mentally existing in any society as such, when the people that compose it, in this case, the transgender group in its different ascriptive characteristics, constitute an organized and recognizable group, with common characteristics. In turn, they are divided into subcategories that represent the units that make up each of the specific social aspects or events. The source of information comes from the qualitative study carried out by the CONFIS Research Group (2018) of the University of Malaga. These categories are as follows.

3.1.1 Social Network Category I refer to the structures of people with common interests in social exclusion and how they relate to each other as a mechanism of exclusion. I distinguish here four subcategories: Primary groups. These groups are reduced to pairs or equals. The new family models are not yet socially and culturally legitimated, nor has society recognized the value of family pluralism as its own. For this reason, there are clashes between the new forms of families with same-sex unions and the nuclear or traditional family model. On the other hand, the support of the family environment is often fragile from an emotional point of view. It is a factor that profoundly conditions how the person will live his or her transition, the age at which he or she will publicly assume his or her gender identity, his or her educational path, and, indirectly, his or her labor insertion. Secondary groups. In the relations with the environment, we find difficulties derived from stereotypes, feminine archetypes and cultural prejudices, which makes inclusion and social promotion in the elevator of society difficult. There are no meeting and leisure spaces that contemplate diversity as a positive and structuring element of twenty-first-century society. Furthermore, few standardized reference models serve as an instrument of socialization. Transgender people also deal with problems by embracing their self-esteem, cultivating hope for the future and using supportive communities in peer groups, supporting each other. Thus, both in identity building and in life afterwards, social relations are often with groups in the so-called LGBT community or subculture. Social environment. The more rigid the social environment of the transgender person is concerning gender roles, the more difficult it will be to adapt to it. People

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belonging to very small towns, immigrants from other countries with more entrenched sexist norms, with more patriarchal cultures, have prior or tertiary exclusion and therefore added difficulties to their transsexuality, and even a second or third obstacle course. Visibility. There is little visibility, and when it appears in public spaces or the media, it is usually in a stereotypical and archetypical form. The visibility of being trans is not only due to the possibility of passing, that is, going unnoticed. The visibility of the trans trajectory may also be due to a political will to make clear one’s transition to question cisgenerism, which presupposes that all people identify with the gender attributed to them at birth based on their sex (Missé 2013).

3.1.2 Development Category It refers to the human and social capital of society, which can imply a positive change in the relations of this group with the institutions of society, in the interest of social welfare. Education. There is no equality of opportunity in previous generations, and therefore, the level of studies and social capital of this group in the adult stage is medium-low. Nor are gender and transgender competencies considered in a crosscutting nature at all stages of the education system. The educational agents are not always trained in the subject to deal with these situations with the diverse student body. Moreover, the entry of populist, far-right political parties atomizes these issues, with the emergence of the parental pin, in which families can refuse to allow their students to be taught and educated about diversity and identity. With these involutionary measures, the identity traits of the trans group become symbols of confrontation with other social sectors, which breaks the desired social and educational pact that has been reached, with a clear backward step. Education. This subcategory is directly related to the above variables, especially to invisibility. The new generations have had more possibilities to be trained because in general, they have not had to leave the family home as soon as they did so trans precedents. Also, those people who have relied in one way or another on their invisibility, either because their transsexuality was not perceived in their appearance or symbolism or because they were in a moment of ambiguity in their physical appearance, usually before the change of identity, thus enabling greater access to training and the professional world. New technologies. New technologies reproduce stereotypes and encourage the use of the trans person’s body as an object of desire for sexual filiations and other adverse practices, objectifying their figure. In addition, there is an increase in cyberbullying among people who are in the process of acquiring an identity at an early stage of their schooling and even in the adult life cycle. 3.1.3 Economic Category I refer to the economic vectors, as a vehicle for access to the world of work, as they are the vertex of inclusion in the labor and capitalist society, in which we are immersed in the context of globalization.

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Socioeconomic position. This is a subcategory that affects fundamental aspects of the training path, the class position. Here, it plays an essential role, the economic resources to change life, and even in previous generations, to face the expensive medical treatments of change of identity and modeling or improvement. Labor market. A defined vertically segregated incorporation takes place, toward professions directed to these people, with activities related to beauty, artistic, and sexual. In the rest of the professional fields, the barriers are multiple, with an added difficulty finding employment and consequently to social advancement. This becomes plausible with the invisible and symbolic mechanisms of the system, limiting real equality and equality of results. On the other hand, the high degree of labor exclusion places trans people in situations of vulnerability in the labor market and categorizes this group in a more vulnerable situation. These keys help us to understand the differences within the trans group concerning the possibilities of insertion. It also means a greater risk of social exclusion than in other sectors of society (Coll and Missé 2018). Segregation and the gender gap. The gender wage gap and gender discrimination in which women find themselves in the labor market simply because they are transgendered is evident (Torns and Recio 2012). There is international consensus among the authors that they have poor working conditions and specific difficulties (Whittle et al. 2008; Schilt and Wiswall 2008). Some of the difficulties stem from stereotypes around female transgenderism associated with informality and marginalization, while male transgenderism does not have the same level of stigma (Missé 2013). Sex work and prostituted persons. The lack of opportunities and social and family disaffiliation lead many of these people to use prostitution, given the low selfesteem of the group and the limited opportunities they have to live. In addition, in the case of Spain, the volume of immigrants who emigrated from their countries in Latin America or Africa, who do not have a regular situation, or are prostituted, enslaved, as a product of human trafficking due to subrogation to networks and mafias. It is double discrimination and an absolute violation of human rights, which derives vertiginously from exclusion to the most absolute social marginalization. However, it is a more evident problem for people with a female identity. The sex market excludes people with a trans-male identity.

3.1.4 Cultural Category This refers to the characteristic form of this group of people, with special emphasis on the cultural symbols of the group and of immigrants, from the point of view of cultural relativism. Immigrant persons. They have a double process of exclusion. In many cases in their countries, they have experienced inequality, previous rejection, which is repeated in the process of adaptation to the dominant culture of the receiving country. Their cultural symbols are abstract and there is no specific socialization that allows them to easily live in a society with these differences, nor to easily enjoy the freedom and human rights.

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Ethnoclass. There are differences in terms of status, social class and level of education, with those in the lowest position being relegated to the second class, with an extra plus being provided by immigrants. In other words, people from different cultural backgrounds have greater difficulty in being included, when they are poor or of family, medium or low cultural capital. We cannot forget the aporophobia or fear of the poor, which becomes more acute if you are also different. Symbology and cultural construction. According to Becerra (2015), the structuring of sexuality occurs during life and is conditioned by biological, intra-psychic and sociocultural factors. Sexuality is an element of cultural construction, not only in its reproductive and pleasurable aspects but also in gender identity as the subject’s self-awareness, the feeling of belonging to one gender or another.

3.1.5 Gender Category There are also sexism and gender differences in the trans community. In the case of women, the processes are usually more complex due to existing gender biases, with gender and interculturality being an interdependent and explanatory binomial of the impact of exclusion on situations of equality. The binary paradigm also extends to identity; since female identity is more stigmatized and judged by the gender impact, it represents and transgresses patriarchy. Gender identity and diversity. Gender identity and diversity are additional variables of exclusion, which add obstacles in the complex race toward equality and full citizenship. In cisgender people, but also in the LGBT+ community itself, socialization that grants a pattern of male privilege and trans-female exclusion is always present. If we go deeper, we find that there are also rejections contrary to sexual and self-identified gender identity. They have more difficulties to have stable couple projects, own family relationships. This clashes with the expectations of trans people, who seek romantic relationships and the omnipresence of cisgenderism and transmigration (Blair and Asley 2018). Gender and interculturality. It is an interdependent binomial. Non-white women face inequalities due to participation in higher-risk forms of sex work, low socioeconomic status and employment, and institutional discrimination, with greater emphasis than women of color (Noack-Lundberg et al. 2019). 3.1.6 Health Category There is some consensus, when considering specific exclusion, for health and mental health problems. This is the result of problems and the impact of physical changes, which are also shaped throughout life. Besides, we must mention the situation of anguish and traumas that they suffer in the evolutionary development, together with the episodes of physical and psychic violence in some cases. Here, discrimination with social exclusion is found. Public health system. In previous generations, the economic costs of gender changes were a trigger for their happiness. Nowadays they are recognized like a social security benefit, but with differences depending on the autonomous community, especially in the treatment and follow-up of those involved. They do not always have specialized teams for comprehensive and adequate care. On many occasions, to

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complete their transformation process they require cosmetic and reparative surgery, which they must pay for in private medicine. Mental health. Traditionally, there is a tendency from the social structure to the pathologization of this situation. On the other hand, the barriers and difficulties experienced, together with rejection and trauma, make this a group that presents many mental health problems and does not always have the appropriate approach in specialized mental health units, which must begin at an early age. It is also worth noting a high percentage of drug addicts, which over time lead to pathological processes. To conclude, the main categories that generate social exclusion in Spain, with the subcategories that constitute the group’s trajectory are presented in Table 1. They are configured, understood as a metavariable or the addition of all of them, which Table 1 Systematization of the categories that generate exclusion among trans people in Spain Categories Social networks Primary groups

Secondary groups Social environment Visibility

Peer groups or trans subculture Differences in identity

Family disaffiliation Need for specific socialization Lack of references Cisgenerism Heterocentric society Stereotypical image Cisgenerism

Development Education Lack of equal opportunities and results Lack of skills Parental pin and backwards Lack of specialization Training Training differences across generations Invisibility New Reification and archetypes technologies Cyberbullying Specific trans networks and own subculture Patriarchal model

Economic and labor Economic Status and class position position Labor market Labor exclusion Vertical and horizontal segregation Job insecurity Lack of opportunities

Cultural Immigrants

Gender Gender, diversity and identity

Health Health system

Gender and identity as pluses for social exclusion Cisgenderism Transmisogyny Human trafficking and prostitution Gender gap Pink roof

Ethnoclass Cultural biases

Mental health

Double exclusion: home population and host society Intersectionality Aporophobia Specific Plus The symbolic construction of interculturality Economic costs Need for specialized equipment Drug dependency Standardization Pathologization Prevalence of mental illness

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depending on the prevalence of each one of the values will determine the degree of exclusion – moderate, serious, or severe.

4

Conclusions and Future Directions

The segregated and stereotyped view that society has of trans people, the social image that is projected, is enhanced by the media and is not representative of their reality. It is an image that is always related to prostitution and negative biases and is a determining factor in their living conditions. Social exclusion clashes with equality and legal exclusion. It is a question of human rights. In all cases, both formal and substantial legal equality can be defined as equality in fundamental rights. Fundamental rights are the techniques by which equality is ensured. Based on the principle of gender equality, the purpose of this chapter has been to deepen understanding of the social rights limited by the social exclusion of the transgender social group, as well as the actions needed to ensure that their right to dignity, safety, health, and integrity is respected. As a result, those rights that are not directly enforceable because of their programmatic content are marginalized from the configuration of public policies that develop and implement them in the daily lives of transgender people. This is the case with the right to work, which obliges the State to provide the elements for the population with the capacity to work to access decent employment, but in no case does it imply the provision of employment to every citizen who requires it. The traces of transsexuality do not correspond only to recent times, or to limited territories. In Spain and a large part of Europe, it has an ethnocentric outlook that shows the emergence of plural identities in different places and cultures. On the other hand, what for a long time was considered, in the best of cases, like pathology or extravagance, is giving way to reflections, analysis, and proposals of deeper depth. We are faced with a paradigm shift in the way sex, gender, and identity are seen, expressed, and represented. The dividing lines that separate them are becoming more and more diffuse, vaguer, less rigorous, building more and more bridges that make the desired social inclusion possible. In the social structure, the institutional and organizational social network is a privileged part of the references for the formation of images and social representations. The dialogue – with periods and incidents of clear confrontation – between the LGBT+ collective and the powers of society has not always been easy. The guiding thread of this dialectic points to the questioning of rigidity in the meaning and configuration of identities, sexual diversities, treated diachronically as forms of deviation. It is very recent, only two decades ago, the change of paradigm toward inclusion policies and social recognition, with important regulatory developments that have had pedagogical effects in the change of values, which makes society begin to recognize sexual diversity as a value of its own and as an essential part of society. We have also noted that there are gender-specific pluses that represent an added difficulty to the processes of social exclusion. In the case of people from different

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cultural backgrounds and trans women, they go down one more step, while men go up. The stairs swing to the rhythm of color and change in society as a whole. Finally, many categories generate social exclusion form a meta-variable formed by a series of variables such as economic, labor, social networks, cultural, gender, and health. In their interaction and transactions, together with their dimensions or sub-variables that are derived, it is explained how the processes of social exclusion are produced to a greater or lesser extent in the trans group, their intensity, in the downward versus outward continuum (exclusion/inclusion). The addition of all of these might, over time, lead to the most absolute marginalization. As a final summary of the issues we have discussed in this chapter, we highlight the need to enhance empowerment and diversity as a human and social right, with initiatives appropriate to the broad spectrum of transgender social needs in both identities, with special attention to the female identity as it has an added characteristic of exclusion and greater difficulties. The new initiatives that are carried out by the different parties must build bridges from an inclusive model for all people, without distinctions. To this end, in addition to the rights of citizens, it is a priority to meet the demands of this group in a heterogeneous manner, taking into account the genders, models, in all their dimensions. We bet on differentiating sex and gender, in order to overcome the eternal discussion between equality and difference, because we are equal socially speaking, but also different and that makes us a better society. In the future, we will continue investigating in this line of research to know to what extent the equality that regulates the most recent legal advances is transformed into equality of results, in the rise toward the pyramid of the desired social inclusion.

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Luis Miguel García Rondo´n and Luis Fernando Ceden˜o Astudillo

Contents 1 2 3 4 5 6

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Stereotypes and Stigmas of The Elderly in Loneliness Situation . . . . . . . . . . . . . . . . . . . . . . . . . . Conceptual Approach and State of The Issue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Loneliness in Transgender Older People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Effects of Loneliness in Transgender Older Persons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Exclusion in Trans Old Age: An Invisible Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Health Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Family and Gender Social Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Exclusion for Reasons of Identity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.4 Exclusion Due to Agism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 Relational and Community Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Although the advances in LGTBI matter have been many, their pedagogical progress in society is still scarce. More importantly, in terms of gender and identity, the transformations slow down to the point that difference and equality are presented as binomials still under construction. On the other hand, the recent phenomenon of loneliness represents a major challenge for LGBTI societies. In recent years, in Spain, there has been some research developed, and an awareness of this issue has begun to be at the forefront of gerontology studies. However, L. M. García Rondón (*) Department of Social Psychology, Social Work and Anthropology, University of Malaga, Malaga, Spain e mail: [email protected] L. F. Cedeño Astudillo Department of Law, Faculty of Humanities, Social Sciences and Laws, Metropolitan University of Ecuador, Guayaquil, Ecuador e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_50

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there are many academic efforts to advance, especially in specific groups such as the situation of transgender older people that is the focus of this chapter. Keywords

Loneliness · Diversity · LGBTI · Old age · Public policy

1

Introduction

Loneliness is a current topic of research interest, following an article published in the New York Times a few years ago, giving rise to the mainstream of the social sciences. At some point in life, human beings feel lonely. During old age, these unpleasant experiences are more likely to occur, although each person experiences loneliness differently (Thumala et al. 2015). It is also common for loneliness to be associated with old age, since, generally, an elderly person relapses into being exposed to a decrease in a social support network and an increase in social isolation. Amidst deterioration in health, losses, inactivity, are issues that contribute greater social exclusion and lead to the occurrence or increase of feelings of loneliness. Maturity is an imprecise period in the life of the human being, in which the capacities for the development of traditional productive actions diminish, and therefore, people are in a differentiated stratum with respect to other sectors of the population. The bias of this qualification is given by the reductionist approach imposed by economic activity, where the quality of life of individuals is defined in relation to their ability to produce goods or services. The exposed circumstances correlate the situation of transgender older people in this context with broad significance and social modeling. This is due to the fragility of the underlying links and symbols in these people, which gives rise to a situation of specific social exclusion. The lack of specific socialization is combined with nonexistent socializing agents in the case of people with diverse sexual identities. These are questions to focus in this chapter, which is linked to the characterization of situations of LGBTI loneliness; with the basic objective of identifying the factors that generate social exclusion and the society response to facilitate the mechanisms for the desired social inclusion in conditions of equality. Returning to the initial discourse, there is a social consensus in classifying old age as being over 65 years of age. However, the fourth age starts from 75. There is still a lack of agreement on the terms of the elderly or seniors, with meanings in the use of the concepts depending on the geographical area. The two preferred terms are senior citizens – Spain, East Germany, Greece, Italy, Luxembourg, and Portugal – and elderly – United Kingdom, Ireland, West Germany. Countries like Denmark and the Netherlands opted for the term elderly, while Belgium and France for retirees. At the opposite pole from a more social concept, Asian culture considers old age an added value, determined by experience as an irreplaceable element for the effective development of a group. This chronological classification does not always correspond to social and cultural age and feeling good. It is one of the biases of Western culture, but it must be appreciated from the point of view of cultural relativism.

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Research shows that LGBTI elderly people are especially vulnerable to loneliness, lacking stable partners, and gradually reducing social contacts. They also have less access to public social resources, designed for the majority, and designed from the heterocentric of rigid patriarchal structures. This discourse is shared by the different voices of the collective, who claim with certain skepticism access to the community and public policies. These organizations distrust that they understand the conjuncture of their lifestyle, which is more censored in previous generations. In this chapter, these premises will be explained, with special emphasis on the object of study. The chapter will begin by analyzing the stereotypes and prejudices as the basis of this problem to better understand the reason for this exclusion.

2

Stereotypes and Stigmas of The Elderly in Loneliness Situation

The stereotypes that society manufactures act as a vicious circle from the inside out when the person assumes the label and its limitations through two mechanisms. The first of these refers to stereotypes and stigmas. There is a false ideal myth of old age as a stage of calm and fulfillment that does not always meet social expectations. In the case of the trans adult, there is a symbolic pink barrier due to the variable sexual diversity and another due to gender orientation. The heterocentric society still does not recognize the social changes regarding LGTBI as its own, nor does it accept other lifestyles, due to the fluctuations between civil and social advances. The second refers to agism understood as a process of systematic stereotypes and discrimination against people because they are old (Butler 1969). It is related to a negative concept and to the discrimination of social discourses that tend to belittle adults after retirement, by relating them to a stage of decrepitude and social isolation of the individual. This is coupled with the negative connotations or added bonuses that it represents in women and in the trans community. In other words, it is agism more exacerbated than in the rest of the members of society, characterized by social segregation and the manifest discrimination of this age group that is on the fringes of society, who over time become invisible. If these two social facts are broken down, the case of exclusion in women and people of diverse identity is twofold, since in the vision of women as reproductive subjects a specific exclusion is emphasized. Undoubtedly, cases of agism are related to a cross-cultural vision that shows us old age as a stage not included for the purposes of society. These behaviors are reflected in the disdain, dislike, or hostile attitude that is presented towards the elderly. Over time, stereotypes become reality. Although some are the product of social construction, they are considered real as they relate to some of the behavioral tendencies of some people. Older trans women are statistically few, but qualitatively very important due to the severity of these situations in them. In this way, it is reflected how violence and stigma violate the rights of trans women. Considering oneself a transgender person entails a series of problems that frame several factors, but being an older person leads to having lived in a time when the freedoms and opinions of certain social sectors

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were in doubt, religion, politics, everything was destined to conservatism thinking. They were different customs where there was not much freedom of opinion, access to information was limited as well as education and there were no activism or social groups. If a trans person at this moment is 55, 60, or older, she is a survivor, because violence, prejudice, stigma was very common and therefore these must have been times of hard existence (Camacho 2017). For obvious reasons, these traumas condition the future life of the older adult. By eradicating prejudices, schemes, taking into account that each person has a different past, a different life, a different perception of life, and, therefore, every individual can make a difference learning to live in society and harmony. In this sense, facing loneliness with this social stigma makes the situation much more complex, especially when the environment does not favor healthy aging. The affected person inevitably integrates these stereotypes of society associated with old age, giving rise to self-stigmas related to their age that anticipates the adoption of such characteristics in later life. Thus, these conditions added to loneliness can show why some older people face so many difficulties when entering this stage of life (Sneed and Krauss 2003).

3

Conceptual Approach and State of The Issue

To locate the state of the problem and understand what loneliness means, it is important to discern two dimensions – subjective and objective. All people at some point in life need to be alone for a certain time to achieve goals. But being alone is not always a problem. The problem would be to think that it is. As indicated by Tzouvara et al. (2015), it is a concept that is broken down into various meanings such as aloneness, solitude, and social isolation that are used to refer to loneliness or loneliness. These synonyms, according to their intentionality and linguistic cognition, have different meanings depending on the situational aspects of objective or subjective loneliness with different meanings: cognitive, depending on the perception of control of the situation; emotional, by the emotional valence associated with the experience and according to how one prepares to become older. On the other hand, feeling lonely is something much more complex to analyze. Some people, even when they live in the company of their loved ones, can feel lonely. In this case, loneliness is subjective and unwanted, as it is an experience that occurs when affective relationships are not satisfactory or do not meet expectations. This occurs in many transgender people, who are rejected by their primary and secondary reference groups. Based on the previous discourse, objective loneliness is discerned from the subjective one. The first refers to the lack of company, although it does not necessarily cause a negative experience. The dimension of subjective loneliness is that suffered by people who feel alone, even living with others, with a painful feeling that causes fear. The latter occurs in people who do not build cognitive reserves or affiliation or social ties to reach this stage of the life cycle. In this chapter, loneliness is analyzed in those situations in which the person expresses feeling rejected or has a

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feeling of lack of affection. A situation that produces discomfort and sadness and even deterioration of both physical and mental health. Although there are discussion practices that define more forms of loneliness, to narrow down the terms, this chapter will focus on social and emotional loneliness because they are very common in transgender older people. In this way, social loneliness is caused by the absence of lasting intimate ties with people who generate a sense of trust and security. It is linked to the inexistence of an adequate social network that allows the elderly person to exercise optimal social relationships for different reasons. The lack of sociability induces a feeling of abandonment or lack of interest in their well-being. As for emotional loneliness, it explains above all the total absence of emotional attachment that is offered in intimate relationships. It usually appears with the abrupt loss of the partner and has many negative consequences in long-lived people, deriving feelings of absolute loneliness, a lot of fear, anxiety, and distrust towards the people around them. Loneliness is born like other constructs through a complicated process. This term is still unfinished due to its recent incorporation into the scientific debate, due to the fact that related concepts are used interchangeably to refer to this experience, as is the case with social isolation (Dickens et al. 2011; Grenade and Boldy 2008; Masi et al. 2011; Perlman 2004). However, it is important to highlight that there is no homogenized concept of loneliness, “there are probably as many loneliness as there are individuals that define them” (López-Doblas 2005, p. 111). This is why it is possible to distinguish several approaches when defining and addressing loneliness. In addition to the inference of the term, in its complexity, it is appreciated that the cultural differences manifested in the prevalence of this experience are due to the meaning. In other words, discerning the way of understanding loneliness from the point of view of researchers and the people who experience it. In the case of transgender people, it is vital to bear in mind the intersections that imply greater complexity, as well as a specific approach to each of the particularities and ascribed characteristics. In addition, there are cultural clashes due to the differentiated origin of a high percentage of these people who emigrated from their countries to win their rights in Europe. As indicated by Tzouvara, Papadopoulos, Randhawa (2015) in her rigorous study, the notion of loneliness refers to a negative situation, the impossibility of satisfying the need to communicate with others, and the scarce social relationship that she feels with her environment and family. From the Anglo-Saxon perspective, by insolation, it is established that being isolated is not the same as feeling alone. In social isolation, there is no company but neither a support network to which to turn. This is one of the fragile points of trans people that we have studied in our empirical work throughout this decade. There is a tendency towards family disruption and disaffiliation, as many of them live far from family members, with scarce public social resources to promote coexistence that addresses their particularities. In the latest case of social isolation, there are no distinctions between being or feeling lonely, but rather it is a scenario where older people have few alternatives. However, the psychological experience of isolation, that is, whether or not it is unpleasant for the older person, will already depend on multiple factors, but above

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all on the ability to choose whether or not to voluntarily make social contacts and create their own ties. In these situations, loneliness would be chosen, which is defined as aloneness or loneliness for the opposite case, in which the person cannot adapt. Although it is well known that excluded people have fewer options to choose and access the desired social inclusion. This slightly more social version is very interesting for addressing the process of social exclusion of transgender people in situations of loneliness. It is built with these ideas, linking it with the social aspects of old age and which are decisive for the perception of the meaning of loneliness as a homogeneous whole, despite the heterogeneity of the group and even of all the elderly in general. However, from the opposite view, Hirigoyen (2013) establishes the experience of loneliness in a positive or lonely way, referring to a chosen loneliness that is rewarding, with very positive feelings of personal self-fulfillment and selfdetermination. All these concepts and their different perspectives offer a broad overview of what loneliness itself means, especially in older people who are the focus of the chapter. Indeed, it is very important to highlight how the language and cultural elements define the experience of loneliness and will offer means to address the different elements of this situation in transgender older people. To broaden a little the analysis of the different definitions, in Table 1, this theoretical approach is constructed from Table 1 Contributions of the different theoretical approaches to loneliness Theoretical approach/ authors EXISTENTIAL THEORY

PSYCHODYNAMIC THEORY

INTERACTIONIST THEORY

COGNITIVE THEORY

Main contributions Loneliness is an experience of the human being necessary for personal development and growth. It encourages introspection and the creation of new ideas. Loneliness is described as a pathological state that occurs as a result of difficulties in creating interpersonal relationships. Donaldson and Watson (1996). It is related to an inadequate fulfillment of the need to be intimate and related. Loneliness arises from a reduced social network and from the lack of attachment figures. It is about the deficiency that occurs when a person’s social needs are not satisfied. Loneliness depends on how the person responds to it. Perlman (2004). Emphasizes the role of cognitive processes throughout life.

Limitations and weaknesses It does not distinguish objective loneliness from subjective. It focuses on the individual without regard for society.

It ignores the influence that his social and cultural environment has on the individual, as well as the age of the development of loneliness in the individual. Focuses on the past.

It is reductionist in linking loneliness with attachment It does not attend to social loneliness. Obvious factors such as age, culture, gender, or environment. It does not take into account the cultural dimension. The importance of social support is not considered.

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the different theoretical perspectives, in order to understand the different consequences that this situation can cause to older people who face it:

4

Loneliness in Transgender Older People

The term transgender, or trans, is widely used to define people whose gender identity and/or gender expression does not correspond to the social beliefs typically associated with the sex assigned at birth (American Psychological Association 2019). Trans people have general as well as specific health needs, and the ability to reach competent services to cope with these has been very limited. Among the general needs is an inclusion that takes into account ideas of gender diversity, gender expressions, sexuality, anatomy, and sexual practices seen in the population (Nolivos 2018). A trans person, like any other human being, feels needs, desires, and has capacities to express themselves freely, emotionally, and sexually, leading to a search for these needs to develop a prosperous life. Good physical and mental health can be essential in pursuing the development of these desires and abilities and are extremely important to a person’s ability to lead a life where human dignity is paramount (Nolivos 2018). But all this, no matter where in the world an individual is located, can be susceptible to social rejection, which leads to an inevitable feeling of loneliness as part of your daily life. With outrages, disrespect, or discrimination of which they can be victims through harassment, verbal attacks, and the denial of access to social spheres and even physical aggression or humiliation. Some recent findings have consistently shown the influence of psychosocial factors, such as perceived control to prevent loneliness in this population (Newall et al. 2009). Reviews of the scientific literature from the cognitive-behavioral paradigm aimed at modifying maladaptive social cognitions and maintaining or improving social relationships (Cacioppo et al. 2006). Now, it is necessary to emphasize that each experience in the individual is unique and that external factors play a preponderant role. Not only the factors of their environment will determine the lifestyle of transgender older people. Cultural aspects count a lot. As indicated, displacement plays an important role and also creates a pattern of emancipation that becomes a new value in modern society, which sometimes determines the aspects of loneliness. Nevertheless, if reality is not simplified, it must be understood that sexuality can be an aspect that impacts throughout life. It is the way a person identifies herself, relates the way she expresses herself1. As a general rule, sexuality is often associated with sexual orientation and gender identity, the former corresponding to affective sex attraction and interest. The second is a very personal construction that is carried out by taking cultural patterns, traditions, expectations, among others (Bauzá 1999). Gender identity carries with it the idea of feeling masculine or feminine. It is a personal experience of people, which is not specifically related to biological sex. Some people do not display their gender identity when it is contrary to what a society or culture expects. This is mainly manifested because when expressing themselves freely and diversely, it can be the cause of discrimination, violence, ridicule, and

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rejection. Within this identity, which is closely related to individual freedom and how a person feels about his body, are non-normative identities that refer to people who question or question the rules of traditional freedom, such as is the case of a trans person. While people who have normative gender identities, such as cisgender people who accept and live the sexuality that was granted to them at birth do not suffer from these exclusions (Nolivos 2018). Gender identity has a different conception than sexual orientation. It can be discerned that a trans person can have any sexual orientation, be it: asexual, bisexual, or homosexual. In general, they want the gender or the name with which they identify themselves to be legally recognized and that the legal documents for the case manifest it. To be accepted, they sometimes modify their physical appearance, an example of this is the way they dress, in order to express their gender identity. Faced with this reality, the authors aim at the de-stigmatization of this experience, which in addition to being natural is inevitable and invites us to visualize the loneliness that accompanies old age towards an emotional experience like any other (Gajardo 2015). Based on this reality, the specific exclusionary bonuses that exist in heterocentric society that build symbolic pink barriers in access to social circles and community life are added. Some people understand in today’s society that older people have little to offer in the social relationship, but even less contribute being women, transgender, and/or of immigrant origin. Symbolically, they are added pink steps or bicolor steps – pink and purple – that make it difficult to access the white pyramid written in masculine towards the desired social inclusion.

5

Effects of Loneliness in Transgender Older Persons

In the effects of loneliness, a set of considerations will be established as part of a process with important psychological implications, which become exponential in the cases of transgender older people. The main effect refers to the gradual disappearance of their immediate surroundings and important co-age references. Another element added to the feeling of loneliness is the dysfunction of various natural processes of dissatisfaction with life, which drive the increase in physical consequences and diseases and even imminent mortality as a result of the resulting stress (Masi et al. 2011). These derivatives are also cumulative and, in some cases, lead to other diseases of a different order. Thus, the first of the consequences to understand in the psychological context related to isolation is the decrease in the possibility of establishing effective and lasting connections with other people. It decreases the possibility of finding a proactive attitude that limits the feeling of abandonment in what could be called a vicious circle, exposed by the feeling of rejection. Not only the part of the people around the elderly but also by the elderly, for the reason being they mostly prefer isolation. Another main point in the consequences of loneliness is to verify the prevalence of social problems such as social exclusion and the helplessness that it generates in

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the elderly, which ends up considering or generating the conditions that keep them alone. By derivation, there is an innate susceptibility under certain parameters, for example, older trans women of immigrant origin or with a low cultural and social capital who have the greatest difficulties. Of the consequences described, a large part of the effects of loneliness and isolation underlie trans people, who have fewer social resources and more fragile support when seeking help abroad. This occurs when considering the impossibility of accessing an effective company to solve said lack. Likewise, since many are transgender of a differentiated cultural origin and lack consolidated support networks, the groups are reduced to their own subculture, but they disappear over the years. This increases the general feeling of abandonment, not only from the family or relatives but from the society as a whole. In this way, anxiety about failure manifests as an immediate response related to the loss of self-esteem and the feeling of not being able to control the outside, which aggravates the isolation. In this argument, the circumstance of the identity crisis that is not yet accepted by society must not be ignored. Over time, it can lead to processes not only of exclusion but also of selfexclusion, leading to a gradual deterioration of the sense of usefulness. At the end of the life cycle, there is a retrospection of all the experiences and learned experiences. If these memories of the biography of a person are positive, there would be a feeling of gratitude for the time lived. Accumulated memories and good experiences help balance emotional well-being. In addition to this, the autonomy crisis, related to the loss of both physical and social skills, implies an accelerated deterioration of the organism precisely because it is a cumulative factor. Finally, it aggravates the belonging crises related to the loss of roles in a society designed from the patriarchal, heterocentric, and white model. This is an important point because it defines the social meaning of existence and establishes an additional stress factor to aging and loneliness. Based on the precedent, the problem of loneliness in transgender people is shown to be not only multifactorial, but also diverse in consequences, which are interconnected in a wide spectrum of effects, especially in social interaction. At the same time, it is a direct consequence of self-imposed isolation by the elderly. In another order of ideas, it is crucial to consider aspects related to communication and the generation of interactions that allow establishing the conditions they go through. The loneliness and the induced isolation generates a particular situation, identified by the difficulties to express or verbalize certain situations. In these cases, transgender older adults develop a fear of communicating their particular conditions and reduce their social participation in a large part of the peer groups, reducing communication to new technologies and social networks. In this regard, there are some conditions that can be considered as psychological consequences of loneliness. In some circumstances, older adults cover up emotional problems with symptoms of ailments, because they consider that they will be conceived as a logical problem of age. Another important consequence is determined by the refusal to verbalize situations or emotions so as not to disturb the listener, either the family member or the caregiver, generating a high level of stress, especially due to fear of social rejection

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that they carry throughout their entire life. These types of attitudes develop problems of self-esteem, insecurity, and contribute to ailments. Finally, additional consideration of the consequences of loneliness in the elderly refers to a methodological aspect for its study. A negative stereotype associated with the lonely person, in general, is manufactured, that is, regardless of age. These schemes refer to a person in this condition as someone difficult or far from the accepted and acceptable social parameters. Over time, they become prejudices due to society’s esteem for different people, with a greater impact on carriers of multiple and complex identities. Many transgender elderly are labeled as conflictive and are even often judged for isolation, valuing that it is their responsibility, alleging individual etiology while omitting the responsibility of society.

6

Social Exclusion in Trans Old Age: An Invisible Problem

As the first issue is taken into account at the beginning of this analysis, the chapter has suggested that old age is nothing more than a stage of life, which leads to a series of changes, both physically and in responsibilities, life roles and expectations, and economic with the new priorities and consumption. As explaining earlier, the discrimination that older people are subjected to is not only economic, it is also cultural and social. Depending on the social and cultural consideration given to people, they will be perceived in an attractive way or not of its cultural and social capital. This culture may ignore older adults because they are not heavy consumers. On the other hand, this highly vulnerable condition in which the elderly is placed carries a greater connotation if they are gays, transsexuals, lesbians, and transgender (Rehaag 2009). However, in the family environment, there are also changes in the place it occupies, the form of communication, and the dynamics. Starting from the fact that there is no single way of being, there is also no single way of aging; Everything is a process that is impacted by personal conditions and dynamics in parallel with the lifestyle, but also with the family and social capital. From here on, the categories of social exclusion are explained. Let take this problem to the different categories that make up the construct of exclusion in the elderly with a diverse identity that have been pointed out in the preceding section above all five specific vectors: health, family, identity, gender, and agism. At all times, the gender variable is incorporated as a transversal axis of all dimensions. This exclusion begins in the field of health.

6.1

Health Exclusion

The lack of recognition of the sexual identity of a patient can have consequences on the health of the elderly throughout the life process. The stereotypes and prejudices of the social imaginary make health personnel ignore the health needs of LGBTI people. Often, it leads to the person being silent about their identity, either out of

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modesty or any other prejudice, and as a consequence, they could be the victim of a bad procedure and their health would be at risk. In previous generations, trans people suffered significant proportion of this discrimination, because trans people in their old age can have serious health problems, as a result of medical treatments used to change their physical appearance to make it according to their preferences. And taking this issue to a senior citizen, it seems that the cons tripled (Camacho 2017). Considering this exclusionary process in daily practice, the vulnerability of a transgender elderly person could be to go to a hospital or a home for the elderly, where they have to receive physical care, in which they can suffer from relevant episodes of transphobia. What is probable is that these people, invaded by fear, do not go to residences or avoid important operations as much as possible rather than being subjected to abuse or humiliation, worse still, before they are forced, in old age, to have the role that matches their natural body at birth and that they have rejected their entire life. As Soley-Beltrán (2014) indicates, the issue of transgenderism in old age can become somewhat harsh for older people who escape the heteronormative. The institutions are not prepared to face the reality of these people, and neither are the other residents, who are, in most cases, endowed with the prejudices of yesteryear. These are ways of living where homosexuality and more specifically seeing a transgender was something truly out of the ordinary and terrible. Besides, the exclusion of health based on gender is even more pronounced if possible. A trans person with a feminine identity who manages to grow old is a person who throughout her life has had to endure and experience acts of discrimination and rejection by the different members of the patriarchal social group. In addition to this, when they are older, these expressions of rejection and misunderstanding increase. That is why it is important to take this social group into account because they are people who need attention from the State, who are given guarantees and quality of life. It is true that in some cases there are public policies or services, but they are not in favor of their interests and the issue of relevance is not reached, which ultimately ends up being a guarantee of their rights. The same society is the one in charge of omitting a reality that is different from that of a heterosexual thought, that is, the forms of life are learned from generation to generation and in none of these parameters the teaching that there is another type is applied of thought, that each person is free to decide their gender identity, that the world is open to infinite possibilities when it comes to human thought; That is what makes it impossible for people in a certain way to understand that in the world customs are not destined to be maintained over time, that life continues and with it, things change, as well as thoughts. The opposite occurs when seeing that those people who have reached old age living their chosen sexual identity realize that their difference is no longer named or taken into account. They simply exist but are omitted. Thus, at any time or time, old age is usually related to evil, an imperfection, sadly an age that is preparing for the arrival of death. Along the same lines, the assignment of gender roles in old age tends to become somewhat weak, since there is greater concern about health and being able to lead a normal life that puts ideas of power and the feeling of being to the test. Masculinity,

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in the case of men. It is valid to say that men can carry out activities in the domestic sphere, such as shopping or doing some work within the home, since typically women assume responsibility for this activity carried out throughout their lives and the concern is aimed at not being able to carry out said activity due to poor health. In the social sphere, the common rule in a relationship or even in marriage is that the woman is younger than the man. Some studies affirm that women have a shorter life expectancy, causes men to trust in receiving woman care. On the other hand, women do not trust much in the functions of men; therefore, they trust more in the children and in certain cases, in friends. Likewise, women have been the guardians of the health of others and even in old age, they can collaborate in the care of grandchildren. They help with the dynamics developed in their community, they go to the homes of the elderly and attend classes for the elderly.

6.2

Family and Gender Social Exclusion

In the dimension of family exclusion, a Western society is mostly subject to the custom of nuclear-conjugal family composition structured by father, mother, and children, reinforced by the extended family, But on the other hand, this trend is about to change, because as indicated at the beginning of this chapter, the world is volatile and the people who live in it are volatile, as well as the thoughts and customs. By tradition, in Mediterranean culture, the concept of family is deeply rooted, giving importance to staying with parents, as the center of the family and from a nuclear and not very inclusive family model (Valero 1992). However, from the 1970s onwards, a slow process of social transformation began towards new family models, which has a reference point in emerging family patterns worldwide that meets affective needs to the same extent, regardless of gender, roles, and modality of the type of family member (Thurston and Kubzansky 2009). The basic function of family social support in the elderly is referred to as the activity mediated by the actions undertaken by them, as part of the process of affective adaptation produced by the family for the adequate function of aging. Both the adaptation to the condition of the elderly person, as well as the development of the social activity, find a necessary foundation in family affection. The relationship between the two is evidence as indicated by Paolini, Harris, and Griffin (2016, p. 23) when: “the members of the family establish a relationship that reaches the practical in situations such as choosing social centers or in the forced reference to the activities carried out by the adult higher.” Therefore, the displays of affection, in this case, represents a vital activity in the quality of life. Thus, the knowledge of concepts associated with this attention entails the consideration of the presence of affective behaviors, all the product of social interaction. This leads to effective assimilation of life contexts, favoring exchange through socializing activities, meeting, and integration between the family, the elderly, and the environment, determined by positive interaction. Family is found one of the weak points or factors that generate exclusion in trans people because they have only a small segment of their own families. For temporary

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reasons, the values are far from the pedagogy that one lives in the present century. These elders are from the generation of the 50s and 60s where diversity generated a family schism. Consequently, the relationships between family members have eroded the function of guarantors of the process of care, protection, and do not always fulfill the social function in charge of facilitating the tools for the development of positive activity to manage the end of life. This socialization agent should be a fundamental axis in the institutional context, as it is the only institution that exclusively satisfies the affective needs that help to better prepare psychological power to face this stage. The difficulties in social affiliation with secondary groups derived from stigma, which sometimes invokes the rejection of other peer groups in social and couple relationships, cannot be ignored. Sook’s research (2013) highlights the fact that women are central axes of the family. After all, the family find it relatively easier to summon the women even in cases of loneliness, voluntary or forced because they are social beings that build more social ties than men, solidarity benches, and emotional space. In the case of countries with Latin roots such as Spain, the issue is much more complex due to the articulation of these sections. Above all, because of its traditional family structure based on cultural, family homogeneity, and patriarchy, that is still very present in these generations. From this point of view, it is interesting to observe how this paradigm shift imposed by modern society may have also affected the problem of loneliness in older men and women. It is a family model that has not yet progressed towards the diversity of family models that underlie the current scenario of the present century. This condition explains the value of the role assigned to the elderly between both age groups. Some LGTBI older people may have formed their own families, but they are likely people of the same age or friends who do not feel obliged to take care of someone vulnerable or sick, which, as an example, could be an elderly man or woman (Guerrero and Yépez-Ch 2015). It should be noted that these people constantly face family or social conflicts, due to pressure from society and the lack of legal protection for LGBTI and/or older life options. This demands that, through activist movements and support, older adults be included in proposals and demands, in order to have social equality and collective thinking in which a language of inclusion and not exclusion is dictated. Following the previous idea, it is established a community exclusion due to the lack of representation of trans older people in the activism of LGBTI movements. This is a current process in which relationships between men and women have equity, which would be to question the old beliefs imposed by society in past times and matriarchy. All this, as Hegel (2019) indicates, is interpreted according to the interrelated dialectic between family, private property, and the State. But it must be determined that social and family visibility is the first step towards respect for rights. This visualization becomes plausible through family affiliation, participation in different spheres, and social groups in sociability with a strong symbolic component. But to better understand these interactions, it is necessary to point out the gender connotations designed from the traditional patriarchal family. Poor conditions and the lack of a legal family become discriminatory factors.

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In this type of thinking, women have been prepared to play the role of caregivers for anyone in need of care, whether they are older or not (Camacho 2017). Social exclusion based on gender. In the third dimension of exclusion due to gender, the rights of women to better opportunities, dignity, and equal conditions, continues being a constant struggle. But they also continue to be violated among women members of the LGBTI movement, who in turn are sometimes socialized in patriarchal models. Gender advances have always remained in the background as a pending issue when in reality they are advances that must go in parallel with the rights of trans people as they are interrelated (Camacho 2017). In the case of women with a feminine identity, the question of family activity is added, centered precisely on their maternal figure and the confrontation with a new substitute role that should be the thematic center of any approach. Another aspect to take into account is gender identity, which is nothing more than the experience that someone has of their own gender. Transgender people have the idea of a gender identity different from the sex that corresponded to them when they were born. The explanation will be more specific in the next section.

6.3

Exclusion for Reasons of Identity

In Western culture, in a reductive way, two gender identities – female or male – have been mentioned in a binary way that is associated with the biological sex of women or men, with heterosexuality being the gender identity that has prevailed since ancient times in the unconscious collective. This is what has governed the way of thinking of society. However, some people cannot be defined by these terms, that is, their identity formation is not based on the sex that was granted to them at birth, and their sexual orientation is not always towards people of the opposite sex. From this prism, the idea of sexual diversity and gender identity arises. The fact of identifying with a diverse gender identity puts into judgment what is socially expected, which generates fears and prejudices from the other members of a social group. Hence, discrimination can be generated that leads to social exclusion in various categories such as education, employment, and family. Even if the action of these prejudices is carried out, it can lead to crimes based on hate, due to having a gender identity or sexual orientation different from that which is socially acceptable (Bauzá 1999). Discrimination occurs towards everything that people are not used to or customary rules. This is why people with diverse identities are among the target population or victims by triple action, due to their identity, gender, or cultural origin status.

6.4

Exclusion Due to Agism

Age is also presented as a factor of discrimination, and much more if it is someone of the elderly with a gender identity contrary to what is established since age discrimination is a very common phenomenon due to ageism that underlies time and current

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SOCIAL EXCLUSION

• gender

• identity • agism • interculturality

VULNERABILITY

SEVERE EXCLUSION/ MARGINALIZATION

Fig. 1 The triad of gender, ageism, and identity in the construct of exclusion

space. That is, act according to stereotypes, treat people according to their age, and above all question their customs and roots that a priori is detested by the rest of humanity (García 2018). For the feminine identity and women in general, the weight of this burden is greater, because their social roles are questioned more than men and only the reduced role of a caregiver without a social life is accepted. Ultimately, four strata of exclusion can be reached: identity, intercultural, gender, and age. All of them are pluses or sums that go from the binomial down versus out, moving from vulnerability to the most severe exclusion, ending in the most absolute marginalization. The intensity will be determined by the sum of these ascriptive characteristics. In this society, no one is as overlooked, rejected, or invisible as an older transgender. Being ignored is one of the great obstacles they face. In LGBTI older people, it is a rejection that has specific connotations. It cannot be forgotten that it is a generation marked by repression, ideological discourses, and persecutions, wherefore a heterocentric society that, in turn, denied sexual diversity is determined. Consequently, there is a sector of the population, which finds it difficult to recognize sexuality free of prejudices with people entering old age. As indicated, the triad gender/interculturality, identity, and ageism represent an interdependent construct of social exclusion in lonely transgender older people. Figure 1 clarifies the inferred ideas.

6.5

Relational and Community Exclusion

Regarding this aspect, the loss of affinity and affiliation with peers, it is perhaps the most relevant, considering the importance that this condition represents for life in relative solitude. Communication with the intention of achieving a positive intervention, becomes an insurmountable barrier in many ways, for various reasons that limit the effectiveness of any strategy proposed when offering a healthy framework of accompaniment.

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The universal conception of heterosexuality conditions in a significant way, in general, the lives of LGBTI people, even more so if they are people with total or partial dependence, which in this case are older adults; who have had to suffer the compulsory imposition of heterosexuality throughout their lives, given that in the past there were no laws or special protections for the inclusion of this type of subject. Despite the advances sponsored by globalization, and the technological and digital society, there is facing a change in the way of thinking and assuming diversity of thoughts. These advances have not led to pedagogical effects on social thought, articulated in an in-depth analysis around the discourses on this topic: the sexual orientation/identity of the elderly, their connotations, perceptions, and, above all, acceptances. This is a time in life when gender identity and acceptance by society significantly intervene in quality of life. If other sociological elements are added, the number of older people with sexual diversity is increasing as the number of older people grows in a society that ages more and more each day. It could be said that one is facing the first generation of old people who, perhaps in their youth, could not live their own life, given the political circumstances or customs they lived, but they do have options to do so in their maturity. For this reason, to forget about old age, LGBTI associations have not yet framed any type of protection or policy related to the old age of gays, transvestites, lesbians, transsexuals, and bisexuals. And the more vulnerable a sector of the population is, the more that vulnerability is suffered and accentuated. For instance, governments currently offer social programs for heterosexuals and may be ineffective for older LGBTI people, since they live in a social environment that only takes into account the possibility of a heterosexual relationship (Llanes Betancourt 2013). Likewise, it must be taken into account that the institutions destined to old age and the protection of it, carry ideas of a conception of imposition towards heterosexual thinking, and the denial of the sexuality of older adults. The question that can lead to a conclusion from the above is where is a transgender senior citizen headed. To a nursing home? It should be remembered that the isolation of older adults considerably reduces their living conditions. In the same way, it can be said that the elderly has a greater dependence on public services compared to young people; they are more dependent on those institutions that considerably make gender identity invisible. This could translate into that at a certain moment the transgender person does not receive the respective services on which they are necessary or on which they are dependent, and this would greatly affect their social well-being (González 2020). In other words, loneliness is a phenomenon that affects the entire society as a whole and the transgender community cannot be less. It is therefore evident that trans people have similar concerns as other people regarding health, loneliness, and financial concerns. The difference is that there is a notable fear of the future, of rejection, added to the fear of transphobia and social marginalization that they may suffer for the simple fact of having a different gender identity. Similarly, the heterosexual environment in which trans people move makes them susceptible to adverse circumstances inherited from the exclusions they have experienced. This

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means that they have a reduced working life and their rights to a decent life are diminished in the last stage of life. To all this, adding the lack of support that trans people need when they reach their old age because many of the fourth age tend to be dependent, and due to their age or condition they cannot work or fulfill the same role of responsibilities contingent on youth. They also do not have the support of primary and secondary groups. Empirical evidence shows that people who are supported, guided, and with active social recreation tend to have a better quality of life, not only in the social and psychological field but in all aspects; It is appreciated that older people who live moments in which they can spread their thoughts and ideas with other people, may have a better disposition towards life and better satisfaction with it. Under this analysis, one could say that support networks are of great importance so that they feel important, attracted to the exchange of ideas and experiences, starting from the basis that they must have active participation in this kind of program. Furthermore, there are other symbolic issues also present. The denial of sexuality in old age by society also causes an exclusionary environment. Society does not imagine LGBTI older adults. The social image of homosexuality, transsexuality, lesbianism, is closely associated with that of young or middle-aged people. In recent times and as a result of the sustained struggles of various feminist, anti-patriarchal, LGBTI groups, among others, various inconveniences and problems have come to the fore. Until very recently, the idea of compulsory heterosexuality was coined, as if it were a political imposition, in an organized way and maintained through force, at the service of men, who do not want to lose their privileged place. As a conclusion, the generated categories of social exclusion are represented as a synthesis in Table 2, which serve to know the trajectories of this group that hinder full social inclusion. Situating within the positions of people, the exclusion is a continuous process that begins with vulnerability, and over time can lead to moderate social exclusion and whose end is severe exclusion or marginalization, that is, to be on the most absolute fringes of society. Depending on the sum of the categories, the intensity of these situations can be understood. However, each person, according to their lifestyle, will have a different individual trajectory. This is visualized in Fig. 2, shading the grade of each category assigned in the trans majors: In this figure, it can be seen how social exclusion and discrimination can respond to the disadvantages that exist during adulthood of trans people. However, in the trans elderly population, the composition remains ambiguous. Based on empirical research, there is a serious challenge of developing a coherent exposition of social exclusion in old age. Addressing this research deficit (due to the scarce works related to the subject) the chapter present the findings of a review in two general phases: The first, which reviews the conceptual frameworks on exclusion in trans senility, identifying theoretical understandings and domains of loneliness, sexuality, and gender. In the second phase, the chapter proposes social spects such as services, social relations, economic resources, and interpersonal aspects.

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Table 2 Categories that generate social exclusion in transgender older people Exclusion Category FAMILY AND RELATIONAL

HEALTH

GENDER

PERSONAL COMPETENCES

SOCIAL

AREAS

Difficulties Patriarchal and heterocentric models Low family affiliation Segregated social relationships that decrease over the years Previous family conflicts Reduced family support Social participation Ageism Health situations derived from the change process Treatment difficulties in specific care Mental health Gender resistance in society and specific groups Gender/intra gender violence Feminism of equality and difference Gender and interculturality Secondary victimization Lack of socialization for old age Weak cognitive reserves Self stigma and prejudice Stigmas inherited from cultural heritage There are no specific social policies Little attention to symbols and specific needs Exercise of their rights Homogeneous and generic equipment Social participation

Vulnerability

Moderate exclusion

Severe exclusion and / or marginalization

FAMILY AND RELATIONAL HEALTH GENDER PERSONAL COMPETENCES SOCIAL Fig. 2 Position of the transgender elderly person in the trajectories of exclusion

7

Conclusions and Future Directions

To understand a little better the issue of transgenderism in old age and the awakening of a feeling of loneliness entails, it is necessary first to address an important issue, and that is the loneliness assumed by the elderly: The situations that frame this

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phenomenon and the causes or circumstances surround the feeling of being alone or excluded from society, and even more so if it is a transgender older adult. One of the unknowns to solve when starting this analysis is to find out if the elderly is receiving respect and acceptance from a stranger, volatile, and less empathetic world as the days go by. It can be a mistake to think that these people only need physical attention, because the truth is that the attention must be psychological and empathetic, for better development in the social and cultural sphere (Bravo 2008). The human being is a social being by nature, people need to have a certain bond or interaction with other people, no matter where they live and the situations that surround daily living, they must always have a certain connection with other people. For everyone, social activity is necessary for life, without implying psychological stress, because as previously stated, people are social beings who need to interact, coexist, and share thoughts with other people in the community (Aristotle 2020). An example of this is inclusive participation in the family and community environment of an elderly person; This could be a source of life satisfaction since it allows the relationship with others of the same generation and with people of other generations. If participation and inclusion in community relations and with more diverse groups are promoted, greater integration will exist in the social sphere. As argued in the chapter, transformations in terms of equality, distinguishing feminism from equality and difference, could be the unprecedented social change in the present century, but there is still much to advance, growing at a slower rate than rights LGTBI. The world is changing, and it does not change alone, with it the economy, religions, customs, and people. In the historical and current sphere, trans people are one of the most excluded groups around the world, and all their rights have been affected. It is also more emphatic for those people with a female identity who has been forgotten in actions of gender violence, without specific protocols, who suffer from secondary victimization. While it is true that whenever there is an established society, individual rights and freedoms will be vulnerable to threats from different members of the social group, it is the task of each of all human beings to change that perspective, living in favor of respect, empathy, and fraternity.

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Thumala, D., Arnold, M., Massad, C., & Herrera, F. (2015). Inclusion and social exclusion of the elderly in Chile. Santiago: SENAMA FACSO U. of Chile. Editions National Service for the Elderly. Thurston, R. C., & Kubzansky, L. D. (2009). Women, loneliness, and incident coronary heart disease. Psychosomatic Medicine, 71(8), 836 842. https://doi.org/10.1097/PSY.0b013e3181b40efc. Tzouvara, V., Papadopoulos, C., & Randhawa, G. (2015). A narrative review of the theoretical foundations of loneliness. British Journal of Community Nursing, 20(7), 329 334. https://doi. org/10.12968/bjcn.2015.20.7.32. Valero, A. (1992). The prevalence of the nuclear family in the Spanish system. International Journal of Sociology, 3, 183 210.

Social Inclusion and Immigrant Workers

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Coming Out of the Shadows During COVID-19 Pandemic Catherine K. Medina and Rebecca L. Thomas

Contents 1 2 3 4 5 6

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . COVID 19: Public Health and Economic Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Essential Occupations and Identifying Essential Workers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Undocumented Immigrants as Essential Workers in the USA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Agriculture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Meatpacking Industry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Undocumented Immigrants as Health Care Essential Workers for a US Aging Population . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Reconstruction: A Call to Action for Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

914 915 917 918 919 920 921 924 926 927 931 932

Abstract

Immigrant groups are often adversely affected by the social exclusion process, which promotes a lack of opportunities, choice, and not being part of the democratic process that promotes social inclusion. In the USA, immigrants, particularly the undocumented, work at higher rates in essential critical infrastructure sectors than native-born citizens. COVID-19 has exposed the systemic undervaluing of work that is now clearly understood to be essential for societal survival. During the COVID-19 pandemic, immigrants are risking their health to keep Americans safe, healthy, food secured, and contributing to the US economic recovery. The need to promote social inclusion measures for immigrant essential workers is a global concern. This chapter addresses the COVID-19 pandemic, a relational conceptualization of social exclusion, essential workers, and the significance of undocumented immigrant contributions during the pandemic. It C. K. Medina (*) · R. L. Thomas School of Social Work, University of Connecticut, Hartford, CT, USA e mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_51

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acknowledges the divestment of immigrant populations by the Trump administration, and the lack of responsiveness by the US Senate to the needs of undocumented immigrant essential workers. Future directions include a reconstruction of social inclusion measures through a call to action. A partnership among government, employers, and essential workers is necessary for the undocumented to come out of the shadows and become part of the social fabric through a pathway to citizenship. Keywords

Essential workers · COVID-19 · Social exclusion · Social inclusion · Undocumented immigrants · Policy advocacy

1

Introduction

Newly arriving and established immigrants often have basic needs ranging from finding housing, employment, and health care to accessing education and digital technology. Engaging in civic activities and social connections are essential to social inclusion. Without these services in place, it can be very challenging for immigrants to be integrated in their newly adopted society so distant from their country of origin. According to Silver (2015, p.16), the dimension of social exclusion receives the most attention and concerns racial and ethnic groups, especially immigrants. Too frequently, immigrant groups are pushed to the margins of a society by a social exclusion process, which promotes a lack of opportunities, choice, and not being part of the democratic process of social inclusion. The experience of social exclusion can be defined as a process that involves the lack or denial of resources, rights, goods, and services, and the immigrant groups’ inability to participate in broad social relationships and activities (United Nations 2016). In the USA, immigrants, particularly the undocumented, work at higher rates in essential critical infrastructure sectors than native-born citizen (Kerwin et al. 2020). Undocumented immigrants are one of the largest groups among the US immigrant population and it is estimated there are 10.5 million strong in numbers with seven million actively involved in the US workforce. Of this seven million, it is estimated that 5.2 million are essential workers. An estimated one million are Dreamers, part of the 2019 American Dream and Promise Act, who entered the USA as children with their parents who did not have any legal status. According to Kerwin et al. (2020), in the USA, 69% of all immigrants are essential workers in the labor force (16 years and older) and 74% of undocumented workers are essential workers, compared to 65% of the native-born labor force. FWD.us (2020) reports that the American Community Survey (2016–2018) estimated that nationally undocumented immigrants comprise up to 11% of agriculture workers, up to 6% of food services and production workers, and up to 2% of health care workers. As essential workers, immigrants fill gaps in the US economy and workforce, improve labor market efficiency, and support the aging population (Sherman et al. 2019). An estimated five million undocumented

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immigrants – nearly 3 in 4 undocumented immigrants in the workforce – are keeping the country moving forward as essential workers (Svajlenka 2020). During the COVID-19 pandemic, immigrants are working, often at great risk to themselves, their families, and communities. They are risking their health to keep Americans safe, healthy, food secure, and contributing to the US economic recovery (Kerwin et al. 2020). Yet, the Trump administration continued to divest in immigrant populations aimed at social exclusion through policies and administrative measures (Kerwin and Warren 2019). The term immigrant is used throughout this chapter to refer to those documented and undocumented immigrants, Deferred Action for Childhood Arrivals (DACA), seasonal migrants, farmworkers, resettled refugees, and asylum seekers. Many of these groups are undocumented, meaning that they are susceptible to deportation even after being in the USA a decade or longer. Much of the literature and data on undocumented is sparse and aggregate these distinct groups. Wherever we can differentiate we will because our focus is on undocumented immigrant essential workers. This chapter addresses the COVID-19 pandemic, a relational conceptualization of social exclusion, and defines essential occupations and workers, and the significance of immigrant contributions during the crisis. It discusses the core value of social exclusion, a lack of social inclusion and power focusing on undocumented essential immigrant workers during the COVID-19 pandemic. COVID-19 has exposed the systemic undervaluing of work that is now clearly understood to be essential for societal survival. In the USA, much of the essential work is performed by immigrants and people of color, who also must confront structural barriers and an inhumane immigration system. We recognize that there are several essential occupations designations worldwide. For this chapter, the focus will be on immigrants as essential workers in a heterogeneous set of jobs that have high levels of risk during the COVID-19 pandemic – agriculture production, meatpacking services, and nursing homes. These industries are identified as part of the critical infrastructure workforce necessary to protect communities, and to ensure the continuity of functions critical to public health and safety, as well as economic and national security (DHS 2020). This chapter addresses the continuous divestment of “categorical” immigrant populations by the Trump administration, the lack of responsiveness by the US Senate to the needs of undocumented immigrant essential workers, and a social inclusion reconstruction through a call to action. The need to promote policies that value social inclusion for immigrants, particularly immigrants working in essential services, is a global concern.

2

Social Exclusion

The historical origins of social exclusion go back as far as Aristotle (Sen 2000). However, for the purpose of this chapter the authors are addressing the contemporary implications of this concept that began with René Lenoir, Secretary of State for Social Action, during the French Gaullist government in 1974. Lenoir was the first to globalize the term when he associated social exclusion with the country’s

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civil unrest in the late 1960s in the context of growing unemployment and socioeconomic inequalities. These conditions, where a class of people are excluded from economic growth and social opportunities, resulted in a perceived breakdown in social cohesion. The response of France’s welfare state to the inequality crisis led to instability of social bonds and a breakdown of the perceived solidarity of the classes (Silver 1994). A more comprehensive explanation noted by Levitas et al. (2007), p. 9) is: Social exclusion is a complex and multi dimensional process. It involves the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities, available to the majority of people in a society, whether in economic, social, cultural or political arenas. It affects both the quality of life of individuals and the equity and cohesion of society as a whole.

Essentially, social exclusion prevents individuals and communities from fully participating in their nation’s political, economic, and social life through marginalization and practices that can rob them of dignity, security, and the opportunity to lead a better life (World Bank Group n.d.). Others emphasize inadequate social participation, lack of social integration, and lack of power. According to Mathieson et al. (2008), social exclusion has most commonly been used within a policy context to describe a state of extreme disadvantage experienced by specific groups in a society. It is as if social exclusion occurs in a vacuum and not strategically planned by those in power or public officials responsible for policy development. This limited understanding of social exclusion can intentionally reduce its global relevance and structural complexities. Worst of all, it does not allow for policymakers to understand the root causes of inequalities and prevents the development of social inclusion policies and actions to address existing structural inequities, such as the widening of the economic gap. For example, the United Nations Department of Economic and Social Affairs (UNDESA) (2020) reports that inequality has grown for more than 70% of the global population, yet the richest 1% has increased their income share between 1990 and 2015. Income inequality in the USA is the highest of all the G7 counties (the UK, Italy, Japan, Canada, Germany, and France; Schaeffer 2020). Americans in the top 1% average over 39 times more income than the bottom 90%, and in aggregate take in over 196 times the income of the bottom 90% (Inequality.Org 2020). Although much of the focus of the income inequality debate has been on the rising incomes of the 1%, there is also growing concern about the economic situation of a large population of low-earners – perhaps as much as the bottom 40% in some countries – who have been slipping deeper into poverty (Keeley 2015). According to an OECD (2015, p. 11) report, “when such a large group in the population gains so little from economic growth, the social fabric frays and trust in institutions is weakened.” To end this inequality crisis, global leaders must build an economy for ordinary working people, including immigrants, not the rich and powerful. For many, exclusion is seen as the attempt of one group to secure for itself a privileged position at the expense of some other group (Hills et al. 2003).

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A different approach to define social exclusion that has a greater investigative advantage is a relational approach. For example, Estivil (2003), p. 19) suggests that there are processes driving social exclusion and levels at which it operates that need to be understood as: an accumulation of confluent processes with successive ruptures arising from the heart of the economy, politics and society, which gradually distances and places persons, groups, communities and territories in a position of inferiority in relation to centres of power, resources and prevailing values.

This chapter focuses on a relational approach which notes that social exclusion consists of dynamic multidimensional processes embedded in unequal power relationships, while interacting across cultural, economic, political, and social dimensions and operates at the level of individuals, communities, nation-states, and global regions. Silver (1994) further elaborates the discourse of social exclusion by giving examples of types of exclusion experienced by newly arriving and established immigrants. Based on the literature, he describes social exclusion as the economic, political, and social processes of being deprived: Economic – a livelihood; secure employment; earnings; property, credit, or land; housing; the minimal or prevailing consumption level; education, skills, and cultural capital; and the benefits provided by the welfare state; Political – citizenship and equality before the law, participation in the democratic process; and Social – public goods such as health; humane treatment, respect, personal fulfillment, and cultural understanding (Gaviria et al. 1995; Minujin 1998; Cabrera 2000; Velásquez 2001). It is from this relational approach that the authors explore social exclusion, social inclusion, and the role of US immigrants as essential workers in agriculture and food distribution, the meatpacking industry, and as health care workers during COVID-19.

3

Social Inclusion

The concepts of social inclusion and exclusion are so closely related that it is difficult to discuss one concept without including the other because it is on a continuum with social exclusion and social inclusion being at the two ends of a single dimension. According to the United Nations, an inclusive society needs to be based on respect for all human rights and fundamental freedoms. This is based on the core principles of respecting cultural and religious diversity, social justice, and the special needs of vulnerable and disadvantaged groups. Social inclusion fosters democratic participation and the rule of law by advancing social policies that seek to reduce inequality and create flexible and accepting societies that embrace all people (DESA 2009). Social inclusion is based on the idea of belongingness, acceptance, and recognition, so that a person is able to participate fully and effectively in the economic, social, cultural, and political institutions of a country. It implies that no individual, group, or community group can be disaffected from this process of integration because of his or her race, class, caste, or religion (Mukhim 2013). Migrants have been identified as

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a group that endures significant barrier to social inclusion. According to Hayes et al. (2008), a significant development was the creation of the Australia Social Inclusion Initiative in 2002. This initiative emphasizes the provision of opportunities for social and economic participation, especially by the most disadvantaged citizens of the state, and has been at the vanguard of Australian social inclusion policy and practice in the areas of Aboriginal health, disability, homelessness, mental health, refugees, school retention, neighborhood renewal project, young offenders, drugs, International Youth Leadership, and suicide prevention (Hayes et al. 2008). The approach of the South Australian initiative is evidence based and seeks innovative mobilization of government and nongovernment resources to address social inclusion. In 1997, the president of the World Bank stated that “bringing people into society who have never been part of it before. . . This – the Challenge of Inclusion - is the key development challenge of our time” (Wolfensohn 1997, p.4). Three decades later in 2020, particularly, in the current context of the COVID-19 pandemic, this is still the challenge. The World Bank Group defines social inclusion as the “process of improving the terms for individuals and groups to take part in society, and the process of improving the ability, opportunity, and dignity of those disadvantaged based on their identity to take part in society” (World Bank Group n.d.).

4

COVID-19: Public Health and Economic Implications

COVID-19 is the name given to the disease associated with a severe acute respiratory syndrome, referred to as a coronavirus SARS-CoV-2. COVID-19 easily spreads from person to person through respiratory droplets and airborne transmission from an infected person through a cough, sneeze, breathe, or being in close proximity (European Centre for Disease Prevention and Control [ECDC] 2021). In January 2021, there was an estimated 84,532,824 reported cases of COVID-19 and 1, 845,597 deaths affecting almost all countries around the world with daily evidence emerging that COVID-19 continues to have a high proportion of cases with severe infection and mortality rates worldwide (ECDC 2021; OECD 2020a). According to Elflein (2021), the most severely affected countries with number of COVID-19 cases worldwide are the USA (22,132,045), India (10,414, 044), and Brazil (7,961,673). Global governments are operating in a context of uncertainty given the health, economic, and social challenges the pandemic has raised. By spring 2020, more than half of the world’s population had experienced a lockdown with strong containment measures. Beyond the health and human tragedy of the coronavirus, it is now widely recognized that the pandemic triggered the most serious economic crisis since World War II. According to the OECD, besides the pandemic’s repeated health and economic shocks, the long-term effects on human capital, productivity, and behavior may be long lasting. It has shaken the world, setting in motion waves of change and exposing the vulnerabilities of immigrants working as essential workers in the food distribution, meatpacking, and health care industries. During COVID-19, all economic sectors are affected by disrupted global supply chains, weaker demand for imported goods and services, a drop in international

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tourism (OECD 2020a, September), a decline in business travel, and most often a combination of these. Unemployment levels and the number of aid seekers globally have increased, sometimes dramatically. Many countries “exited” virus containment measures to mitigate the impact of the economic crisis only to face a rising wave of cases in autumn 2020, jeopardizing recovery. The exit strategy from the crisis is not linear, because of the connectedness of the economic and public health issues. As we have globally witnessed, the “stop and go” strategies of lockdowns have proven ineffective until a treatment or the vaccine is easily available or accessible to all persons. Estimates released by the OECD in September 2020 indicate that real global GDP is projected to decline by 4.5% in 2020 and by 5% in 2021. OECD unemployment is projected to rise to 9.4% in Q4 2020 from 5.4% in 2019. The projections assume that sporadic local outbreaks of the virus will continue in the USA, with the pandemic being addressed by targeted local interventions rather than national lockdowns and wide availability of a vaccination which is not expected until late in 2021 (OECD 2020b, March). The next section will discuss immigrant essential workers in agriculture, meatpacking industries, and health care in the USA.

5

Essential Occupations and Identifying Essential Workers

As previously stated, in response to the COVID-19 pandemic, more than half of the world’s countries have temporarily suspended parts of their economies to slow the spread of the disease. In the USA, while many workers have been teleworking and others have lost their jobs, some have been deemed “essential” to the critical infrastructure by states and must report to work despite the shutdowns. As states begin to decide how and when to reopen parts of their economies, workers considered essential will continue to remain relevant. In March 2020, the US Cybersecurity and Infrastructure Security Agency (CISA) executed the Secretary of Homeland Security’s authorities to secure critical infrastructure. Consistent with these authorities, CISA collaborated with the public and private sector to develop an “Essential Critical Infrastructure Workforce” advisory list. This list was advisory and not a federal directive, but rather allows states, local, tribal, and territorial officials to make decisions about public health and the economy based on the specific COVID-19related concerns of particular jurisdictions. Individual jurisdictions should add or subtract essential workforce categories based on their own requirements and discretion. In a memorandum (03-20-2020), the US Department of Homeland Security (DHS) defines essential workers “as persons who conduct a range of operations and services that are typically essential to continue critical infrastructure operations.” Critical infrastructure is a large, umbrella term encompassing different sectors from energy, defense, and health care to agriculture. CISA (year and page???) states “promoting the ability of [essential workers] to continue to work during periods of community restriction, social distancing or closure orders is crucial to community resilience and the continuity of essential functions.” The purpose of the advisory list was to identify workers who conduct a range of operations and services that are typically essential to continued critical infrastructure viability, staffing operations,

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and operational functions. It also includes workers who support crucial supply chains and enable functions for critical infrastructure such as medical and health care; telecommunications; information technology systems; defense, food, and agriculture; transportation and logistics; energy, water, and wastewater; law enforcement; and public works. Because the USA did not adopt a national approach to fighting the pandemic, states were left on their own for making economic and public health policy in identifying essential workers. For example, using CISA’s guidelines as a starting point, states have added and subtracted essential worker categories and sectors based on what makes the most sense for them. For example, in some states workers supporting religious organizations and churches are considered essential, while in other states workers who support the cannabis industry receive the essential designation. Although the intent and spirit of CISA was to appropriately balance public safety, the health and safety of the workforce, and the continued delivery of essential critical infrastructure services and functions, many essential workers did not have social protection from the pandemic. While CISA’s advisory list was meant to help public officials and employers identify essential work functions, it allows for the reality that some essential workers engaged in activity that put them at risk and they were socially excluded from necessary protections to insure their health. The experience of the pandemic has further exposed the contextual vulnerability of immigrants working as essential workers, their families, and communities because of a lack of social inclusion.

6

Undocumented Immigrants as Essential Workers in the USA

The US remains the top destination country of migration (United Nations 2019). Based on the Center for Migration Studies, it is estimated that approximately 19.8 million immigrants work in essential critical infrastructure services (Alulema 2020). Nearly one-half of all US foreign-born essential workers are naturalized citizens, while 28% are undocumented and 23% are legal noncitizens. The undocumented immigrant workers in the USA who harvest the nation’s fruits, vegetables, and crops ($184 billion industry), work in meatpacking plants ($ 218 billion industry), and in nursing health care settings ($129.8 billion) are heroes. Although they are rarely treated that way, they are deemed essential to the US critical infrastructure. On average, undocumented immigrants have resided in the USA for 14 years, and many carry a letter declaring that the Department of Homeland Security considers them “essential/critical worker” (Jordan 2020). The letter does not prevent deportation but avoids being arrested for violating stay-at-home orders. Many undocumented immigrants work in occupations and industries considered essential for the rest of society and they are not exempt from protective stay-at-home or work-from-home orders (The Lancet 2020; Ramos et al. 2020). COVID-19 and the lack of workforce policies threaten essential workers, especially undocumented immigrants’ safety, food supply, and the well-being, especially of the aging population in nursing homes. According to the Center for American

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Progress (2020), there are approximately 10.5 million undocumented immigrants in the country, of which nearly 3 in 4 – an estimated five million people, are doing jobs deemed essential to the nation’s critical infrastructure. Yet, many immigrants have no health insurance, do not have sick pay, and are underpaid. Noncitizens are disproportionately uninsured both because of lack of coverage from their employers when they work in the informal sector and ineligibility for public coverage because of their immigration status. According to Turrentine (2020), the US Department of Labor data (2018) reports that a third of undocumented immigrant live below the poverty line. Under the Trump administration, any immigrant who use public benefits (local, state, and federal) may be at risk of being denied residency status (The Public Charge Rule). This policy is a strong incentive for immigrant and undocumented essential workers to not enroll in public health insurance, get tested, or quarantine which impedes public health efforts to curb the COVID-19 spread (Khalid and Moore 2020; Perreira et al. 2018; Page et al. 2020). Amid these stressors, a group such as those of Asian descent, whether US born or immigrant, has been scapegoated for the spread of the virus and faced a wave of xenophobic incidents. Stop AAPI Hate, a reporting center formed on March 19 by a coalition of 40 community-based organizations and San Francisco State University’s Asian American Studies Department, in a three-month period (February–April, 2020) received 1,135 reports of coronavirus-related discrimination against Asian Americans. as of April 3. During this same period, The New York City Human Rights Commission reported Asians were the subject of 105 of 248 reports of discrimination due to COVID-19. By comparison, the commission recorded five reports of discrimination against Asians in the same period last year. Many media sources covered President Trump and his rhetoric where he referred to COVID-19 as the China virus, a further practice of social exclusion.

6.1

Agriculture

Undocumented immigrants are performing essential jobs in many different sectors of the workforce. According to Jawetz (2020), an estimated 389,000 are working as farmworkers and food processors securing the nation’s food supply, even as food processing plants are epicenters of the virus. Simultaneously, the pandemic impacted food supply chains throughout the states, as fruit and crops were at risk of being left unpicked, highlighting how deeply the agricultural system depends on migrant and undocumented workers. Without their labor, the US entire food system would collapse. Yet, many undocumented farmworkers work in fear: They do not have health insurance and often lack labor protections from heat and pesticides, and many are more likely to live in poverty with household income below 200% of the federal poverty level (Turrentine 2020). In 2020, the CDC and Agribusiness report that, on average, farm production workers earn $12,760 as an individual and a family of four earns $26,200 annually. In the spring 2020, their situation worsened with the novel COVID virus up ticking in number of positive cases leaving many of them and their family members infected or dead. According

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to FWD.us (2020), it is estimated that immigrants are 50% more likely to contract the virus than individuals born in the USA. While data on death rates by citizenship status is not available, it is clear that noncitizens have a harder time to access and pay for health care. Workers need to choose between their jobs, their health, and the health of their families. According to Jordan (2020), the undocumented farmworkers often lack the information about the risks they faced as essential workers. The Associated Press reported that employers and managers kept quiet when there was an outbreak among workers. Employers feared the lack of productivity and the loss of the labor force. In addition, 37% of food production workers speak another language other than English at home and a quarter are less than fluent in English. Language communication is a barrier in accessing necessary information about COVID risk and prevention in the field. Undocumented immigrants are excluded from unemployment benefits, federal COVID-19 financial relief, and are not eligible to access public programs should they contract the virus or lose days from work. Even with the ramped spread of the virus, undocumented workers have limited choice but to report to work. Under the Trump administration, if any noncitizen accepted any public assistance this would be used against any pathway to citizenship, except for COVID testing. These social exclusion measures during the pandemic prevented many undocumented farmworkers to access health care when they were sick (Jordan 2020). Castillo (2020) reports that farmworkers, many of which are undocumented, are especially vulnerable to COVID-19: Many work shoulder-to-shoulder without the ability to social distance, many do not have masks, gloves, or adequate sanitation facilities, and they often share buses and carpools to the fields. In addition, spring season was the worst possible time to be exposed to the virus because it is peak strawberry season, and pay structures switch from hourly to piece rate. This wage change is an incentive for farmworkers to work fast, close to each other without protective gear and risking their own health to be a wage earner for their families and remittances to their country of origin (Castillo 2020). Overcrowded and dilapidated housing conditions also place these essential workers at greater risk for contracting COVID-19, as do significant barriers to testing, treatment, and scarcity of masks (Coleman 2020). They face the pandemic and the economic shutdown with no safety net. Because of Trump’s widespread immigration ban and the US suspension of VISA processing in Mexico, there was a shortage of seasonal and immigrant workers. The Trump administration granted temporary farmworkers exemption from the immigration ban, yet there were no governmental efforts to protect immigrant health and safety. In fact, the USA has always depended on immigrants and the undocumented to promote health and safety of the food chain and the continued delivery of essential critical infrastructure services and functions. However, the COVID-19 pandemic highlighted US dependency on immigrants for the food supply and supply chains to keep the American people fed, safe, and healthy. Yet, during this same period the Trump administration banned immigration, threatened the Deferred Action for Childhood Arrival (DACA) program, increased raids by Immigration and Customs Enforcement (ICE), separated children from their

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families at the border, and had zero tolerance for promoting the rights of immigrants and especially the rights of undocumented essential workers. These antiimmigrant and social exclusion policies were reinforced by the Trump administration even as immigrants were disproportionately affected by COVID in number of positive cases and deaths in the midst of the pandemic. Not even the US Congress helped undocumented immigrants when they passed emergency legislation – The Coronavirus Aid, Relief, and Economic Security (CARES) Act. This Act provided direct economic assistance for American workers, families, and small businesses, to preserve jobs in industries adversely impacted by the spread of COVID-19. The CARES Act provided emergency cash assistance to most taxpayers and their children, but not to undocumented taxpayers and not to their US-born citizen children even when one parent was a USA citizen. One must note that immigrants pay taxes using an Individual Taxpayer Identification Number (ITIN). This identifier was created for individuals that are not eligible for a Social Security number but need to pay taxes. ITINS were denied assistance under this emergency bill (Iyer 2020). The CARES Act excluded undocumented immigrants by specifically denying the aid checks of up to $1,200 to anyone who filed taxes using an Individual Taxpayer Identification Number (ITIN) or filed with someone using an ITIN. Even in families with just one member files using an ITIN, the entire family was ineligible (Migration Policy Institute 2020). According to this report, 15 million people in mixed-status families in the USA were excluded from these CARES Act funds. In the interim, some undocumented immigrants and their families are experiencing eviction, food insecurity, hunger, and economic difficulties due to COVID-19. Federal relief has continuously excluded this population of immigrants from income replacement assistance, stimulus payments, and unemployment insurance. These exclusionary policies have exacerbated the adverse economic effects on undocumented families. Yet, undocumented immigrants contribute their share to help fund these programs. In the USA, undocumented immigrants contribute $11.74 billion to state and local taxes a year (Gee et al. 2017). While Democrats were negotiating another federal relief package, known as the Health and Economic Recovery Omnibus Emergency Solutions (HEROES) Act, advocates across the USA were pressuring legislators to include undocumented immigrants in this relief package. Although there was several attempts for a more inclusive package, the final HEROES Act proposed a $2.2 trillion aid package that included unemployment assistance, stimulus payments, an expansion of the Supplemental Nutrition Assistance Program (SNAP), and more benefits to American citizens. Immigrants and the undocumented were excluded from receiving any support (House Committee of Appropriation 2020). The bill passed by the House and was not heard in the Senate (US House Committee on Appropriations; October 1, 2020). Eight months later with no relief from the government, Americans and immigrant essential workers are waiting for the Biden administration for a comprehensive COVID-19 relief effort that includes social inclusion. President Biden has signaled change in his first week of office. This will be discussed in a later section.

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Meatpacking Industry

As previously stated, the importance of America’s food supply and food chain are critical during COVID 19. This urgency was communicated when President Trump signed an executive order aimed at addressing concerns about meat shortages. He ordered meat processing plants to stay open amid workers getting sick, contracting the virus and increasing daily deaths in the meatpacking plants. The order invoked the Defense Production Act to ensure beef, pork, poultry, and egg plants keep running. The order reads: It is important that processors of beef, pork, and poultry (“meat and poultry”) in the food supply chain continue operating and fulfilling orders to ensure a continued supply of protein for Americans. Closures threaten the continued functioning of the national meat and poultry supplies, undermining critical infrastructure during the national emergency.

While undocumented and other immigrant workers are celebrated as essential, in reality they are disproportionately exposed to COVID-19, often with deadly consequences (Artiga and Rae 2020). On the one hand, Americans praise essential workers, and on the other, US policy can promote acts of economic coercion with vulnerable populations who do some of the most difficult and dangerous work. The USA builds a wall along our southern border to keep out illegal immigrants, but then seeks to force those who are already here to do jobs American citizens simply will not do such as meatpacking. According to AEIdeas (2020), there is an even darker side to the meatpacking plants and COVID-19; it is estimated that 30–50% of the meatpacking workforce is made up of undocumented workers from Mexico, Guatemala, and El Salvador as well as immigrants from East African nations. Reports indicate that meatpacking plants, which employ large numbers of immigrants (including undocumented) and refugees, have become centers of coronavirus outbreaks, with one plant in Sioux Falls, South Dakota, becoming the largest hotspot in the country (Migration Policy Institute 2020). In fact, the outbreaks of COVID-19 among workers at some meat processing facilities led to the reduction in some of those plants’ production capacity and closures in many throughout the states. Tyson Foods, one of the largest food companies, referred to meat shortages as “the food supply chain is breaking,” rather than recognizing the slew of infections and deaths (Colvin 2020). Meat industry officials, even as outbreaks ravaged their plants, requested that the Trump administration’s Department of Labor respond to the temporary shutdowns by weakening safety guidelines and that the President sign the above-named executive order to keep plants open. Undocumented immigrants had to choose between their livelihood and their health. According to the Associated Press, Tyson Foods was highly criticized by county officials for not initially providing workers adequate protective gear and for idling the plant only after the outbreak had ripped through the city (Foley 2020). During the pandemic, seven managers from the Tyson Foods plant in

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Waterloo, Iowa, started an office betting pool within minutes following mass COVID testing of the plant’s roughly 2,800 workers. The office pool involved roughly $50 cash a bet by each manager, which went to the winner who picked the correct percentage of workers testing positive for the COVID-19 virus. One of the managers stated, “It was simply something fun, spontaneous, kind of a morale boost for having put forth an incredible effort (referring to managers’ efforts for productivity). There was never any malicious intent. It was never meant to disparage anyone.” The same Associated Press reported that more than 1,000 workers tested positive for the virus, several were hospitalized, and least six died. The betting allegation surfaced in the wrongful death lawsuits filed by the families of four workers who died of COVID-19. Lawyers for the families of the victims portrayed the betting pool as indicative of the company’s callous attitude toward workers’ health and safety. They alleged that managers downplayed the severity of the virus, at times allowing or encouraging employees to work while sick. After an independent investigation, Tyson Foods found sufficient evidence to terminate the seven managers involved, saying their actions violated the company’s values of respect and integrity. However, the company investigated the allegations only after a public backlash threatened to damage its brand and demoralize its workers. Associated Press reports that US District Judge Linda Reade said Tyson failed to show it was acting under the direction of federal authorities. She ruled: No federal officer directed Tyson to keep its Waterloo facility open in a negligent manner ... or make fraudulent misrepresentations to employees at the Waterloo facility regarding the risks or severity of the coronavirus pandemic and COVID 19 outbreak at the Waterloo facility.

These COVID-19 outbreaks at meatpacking plants continue to be rampant because hundreds of workers are required to stand elbow-to-elbow while working at breakneck speed. Because of the meat demands during the pandemic, many plants were working at higher processing line speeds to maximize output. The sheer number of people working quickly and closely together is what likely turned these processing plants into daily super-spreader events. COVID-19 spread in meat processing plants throughout the states and infected more than 42,000 workers and killed at least 221 (Chadde et al. 2021). The meatpacking industry as a COVID-19 hot spot had consequences not just for the workers but for the surrounding communities. According to the Public Health director, Clay Horton, in Green River District, Kentucky, there was a large spike of COVID cases in the seven counties with meatpacking facilities. One of the very large outbreaks was at the Tyson plant in Henderson County, a large outbreak at Perdue in Ohio County, and then a smaller outbreak in Daviess County. This next section will focus on the many undocumented essential workers helping and caring for older adults in nursing homes.

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6.3

Undocumented Immigrants as Health Care Essential Workers for a US Aging Population

As the US wrestles with COVID, with policies about undocumented immigrants as essential workers, there is the looming issue of caring for a large aging population during the pandemic. The size of the aging population is expected to double by 2050 (Ortman et al. 2014), and many will be in long-term care facilities. During COVID, some legislators argued that many older adults would die for the next generations, while others advocated for the right of older adults to survive and live. In early spring 2020, nursing care facilities were epicenters of fatal COVID-19 outbreaks, with over 40% of all US COVID-related deaths linked to nursing homes. Staff of these long-term care facilities (LTC) continue to be at high risk of both contracting and spreading COVID-19 due to their direct care roles. Nursing health care workers face an increased probability of exposure, as social distancing is not always possible and personal protective equipment (PPE) may not always be available. In addition, the lack of staffing and PPE shortages in the facilities were also factors in the super spreading of the virus in nursing homes. According to Lee et al. (2020), some workers reported caring for over 30 residents and reusing a single face mask for 1–2 weeks. Although data on LTC staff infections nationwide is sparse, we note that as of mid-July, over 11,000 staff in LTC facilities in California alone tested positive for COVID-19 and over 100 have died from complications with the virus. It has been noted that undocumented immigrants are more likely to contract COVID-19, be hospitalized, and die (FWD.us 2020) as a result of health inequities and structural racism (Lee et al. 2020). The pandemic exposed a long-standing problem of the nation’s shortages of staffing, personal protective equipment, tests, and ventilators. In addition, nursing homes have an existing history of poor infection protocols and poor labor policies. In a study, 9,372 nursing homes, or 61%, were cited for one or more infection control deficiencies (Kaiser Health News 2020). In New York, the Attorney General ordered an investigation of nursing homes response to COVID-19. The findings showed that a larger number of nursing home residents died from COVID-19 than reported by the New York State Department of Health’s (DOH) nursing home data. There are indications that the deaths were undercounted by as much as 50%. The investigations also revealed that nursing homes’ lack of compliance with infection control protocols put residents and staff at increased risk of harm, and facilities that had lower pre-pandemic staffing ratings had higher COVID-19 fatality rates. Such a contagious virus COVID19 imposed greater demands on nursing home staff, such as new infection prevention and control measures like screening, testing, and cohorting (podding) residents to minimize transmission and contain the spread of the virus. The Attorney General’s report (James 2021) demonstrates that many nursing homes: • Failed to properly isolate residents who tested positive for COVID-19. • Failed to adequately screen or test employees for COVID-19. • Demanded that sick employees continue to work and care for residents or face retaliation or termination. • Failed to train employees in infection control protocols. • Failed to obtain, fit, and train health care workers with PPE.

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These failures had implications for both older nursing home residents and also for the staff and their communities. Undocumented immigrant health care workers are employed in long-term care at a rate of 43.2% compared to 30.4% legal immigrant health care workers and 22.0% of US-born workers (Zallman et al. 2019). There is an estimated 100,000 home health and personal care aides that are undocumented immigrant essential workers (Zallman et al. 2019). Many have low-wage essential jobs as health aides caring for US vulnerable older adults. They are responsible for bathing, feeding, and transferring residents to activities. Immigrants and undocumented workers fill integral staffing gaps within the LTC workforce. They are more likely to work nontraditional shifts and fill key shortages in under-resourced nursing homes. States with some of the highest COVID-19 burdens – New York, California, New Jersey, and Florida – are especially supported by immigrants, who represent over 40% of their LTC direct care workers. According to FWD.us (2020), many undocumented immigrant essential workers have worked in essential industries for years, offering valuable and hard-to-replace skills that are critical in battling the COVID-19 pandemic. Nearly one-quarter of a million – 236,000 – are undocumented immigrants, many of which are Deferred Action for Childhood Arrivals (DACA) beneficiaries and are working in health care provision roles, from 15,000 registered nurses and licensed practical nurses to 19,000 lab and diagnostic technicians, and to 139,000 home health aides, nursing assistants, and personal care aides. In addition, another 188,000 undocumented immigrants are working as custodians, food servers, and administrative workers to keep hospitals, nursing homes, and labs functioning (FWD.us 2020). According to Hannah Siegel, managing director of the New American Economy (NAE), a bipartisan nonprofit immigration research and advocacy group: Right now, we are all dependent on every single healthcare and essential worker. The DACA community is a part of that. According to NAE analysis, there are 62,600 DACA eligible individuals working in healthcare today. In fact, undocumented immigrants overall play a huge role in our most critical workforce, [with] almost 280,000 total in healthcare.

Yet, one essential worker summed up the experience of undocumented workers: Imagine being on the frontlines of the fight against coronavirus tending to the sick and risking your life while anxiously awaiting news about whether you’ll soon be deported to a country you left as a child and scrambling to do immigration paperwork just in case you catch a break. (Livni 2020, p. 1)

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Reconstruction: A Call to Action for Social Inclusion

The COVID-19 pandemic has shed light on US structural failings of social and economic protection of essential workers in agriculture, meatpacking industries, and in LTC facilities caring for an aging population. As discussed, the US undocumented immigrant essential workers must physically report to work because their productivity was critical to sustain the national security and well-being of the American people.

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Similarly, our global partners in Europe had the same challenges: COVID-19 spikes and the trade-off between public health and economic reopening after a lengthy shutdown in the context of a pandemic-hit continent. However, the USA allowed each state to decide whether to lock down during COVID-19. America and Europe have the most high-risk workers, 43% and 42%, respectively (BBC NEWS 2020). Initially, as a public health measure, the Western European government had banned all international travel restricting the movement across borders of Central and Eastern Europe (CEE) migrant workers to protect “insiders.” In March 2020 (the peak of the pandemic), Western European governments assessed their economic situation and realized that the exodus of CEE essential migrant workers left huge labor force shortages in key economic sectors – agriculture, construction, caregiving, and services (Paul 2020). Despite unemployment rising to historic highs, Italians, Spaniards, Germans, Austrians, and Brits were in no rush to accept these “migrant worker jobs.” For example, employers in the UK tried to recruit students and people who had lost their jobs in restaurants and bars, they realized that many of these people were mostly interested in part-time positions and were not willing to work for 12 h a day like many CEE migrants (Borges and Huet 2020). Italy predicted a shortage of one million agriculture workers; France needed 200,000; and Germany and the UK needed 400,000 seasonal workers (Paul 2020). Economic prosperity depended on free movement migration from the “other,” “outsider” migrant essential workers during COVID-19. In April 2020, Europe was experiencing the most severe food crisis in decades. Western and Southern European governments opened negotiations with CEE governments to establish exceptions and to allow special charter flights and trains to transport tens of thousands of temporary, seasonal workers and care givers to workplaces in the West. Exempt from restrictive measures, national lockdowns, and border closures, essential migrant workers from Bulgaria, Croatia, Poland, Hungary, and Romania were entering Western Europe to make a living, send remittances while keeping Europe’s economy afloat (Paul 2020). According to Paul, “distinct networks and coalitions of actors” influenced “core elements of the policy process,” by emphasizing the relationship between knowledge, policy strategy, and implementation. Stakeholders relied on epistemic communities, networks of experts with a particular knowledge of a policy domain and an authoritative claim to that knowledge (Zito 2018). Paul notes that in Europe, migratory systems and migrants themselves as political actors, through protests and a social media campaign, played a crucial role in framing COVID-19 as a problem and in determining policy responses in Central and Eastern Europe (CEE). In the USA, a denial about COVID-19 and the severity of the pandemic by the Trump’s administration and the Republican Party led to politicizing social distancing, mask wearing, testing, and availability of PPE. COVID-19 became a political matter. The lack of leadership and expert knowledge, coupled with the mistrust of science, has resulted in 26,160, 210 new positive cases and 441, 831 deaths as of February 2021 (Centers for Disease Control and Prevention 2021). There was no national response to a national pandemic. Therefore, what voice or power would the undocumented immigrant have to advocate for safety, social protection, and social inclusion?

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If we were to adopt the principles of the Copenhagen Declaration and Program of Action, the nation’s needs of economic and food insecurity and the fostering of social integration should put migrant essential workers at the center of social development and social inclusion. The Copenhagen Declaration committed world leaders to promote and ensure full and equal participation for all, especially the social inclusion of vulnerable groups. These human rights ideals were advanced by the Millennium Development Goals of 2000, followed by the Sustainable Development Goals in 2015 (Healy and Thomas 2020). As a call to action, we need to return to the pillar of social inclusion that includes a process to improve the terms for individuals and groups to take part in society, by increasing opportunities and upholding the dignity of people. The USA needs to value and create policies and pathways for development of all peoples. This includes global collaboration with our global partners to coordinate efforts through the World Health Organization. The UN Secretary-General Antonio Guterres states that “the response to the pandemic, and the widespread discontent that preceded it, must be based on a New Social Contract and a New Global Deal that create equal opportunities for all and respect the rights and freedoms of all” (UN.org 2020). This pandemic has shown that undocumented immigrants have served as essential workers and have had a substantial impact on the economy both during robust and economic downturns. In recognition of the critical role that undocumented immigrants have played, the US House of Representatives has passed the following legislation as pathways to social inclusion: In June 2019, the House passed H.R. 6, the American Dream and Promise Act. The bill would extend a pathway to citizenship for up to 2.5 million undocumented immigrants, including those who arrived in the USA as children, many of whom were protected under DACA, along with immigrants eligible for Temporary Protected Status (TPS). The Trump administration has tried to terminate both programs but has been held back because of legal actions (Svajlenka 2020). The House passed the bill, but the Senate had not brought the bill to the floor for a vote. This pathway has great support from American people. According to the Hart Research Associates, a nationwide poll indicated strong support of 73% for a path to citizenship as compared to 22% who oppose (Center for American Progress Action Fund and Hart Research Associates 2020). Voters agreed with such a policy both because they recognized that such workers stepped up for the country and earned the right to become permanent citizens. In addition, they recognize immigrant workers contribute to the economy. Again, the House twice passed legislation to protect essential workers such as the Health and Economic Recovery Omnibus Emergency Solution (HEROES, H.R. 6800, 116th Cong., 2nd sess. May 2020) Act, which passed in May, and a narrower updated version passed in October. It does provide provisions for temporary protection from deportation and work authorization to undocumented immigrants working in important roles (The Heroes Act). However, the Senate has not heard the bill because the Republican leadership declared it “death on arrival.” The abovementioned bills have separately extended protections for people with Temporary Protected Status (TPS). Another attempt to provide a legal attempt to bring relief to undocumented immigrants has been the H.R. 5038, the Farm Workforce

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Modernization Act, which introduces a pathway to permanent residency for longtime undocumented agricultural workers. Once again, it was passed in the House, but not taken up for a vote by the Senate (Zak 2019; Farm Workforce Modernization Act of 2019, H.R. 5038, 116th Cong., 1st sess. 2019). There is not the political will by the US Senate for social inclusion of undocumented immigrant essential workers. Congress can and must do better. Under the Biden-Harris administration, Senators Padilla and Castro plan to get the five million undocumented essential workers fast-tracked for citizenship as part of the next coronavirus relief bill and then work toward a broader path to citizenship for all undocumented immigrants in a later immigration reform bill. They must include a pathway to citizenship and family reunification. For immigrants to integrate into the USA, they must be given opportunities to come out of the shadows of the fear from deportation and begin to build their lives with increased socioeconomic integration. This involves receiving fair and equal wages, labor protection and opportunities for growth, and prospects for English language acquisition if needed. There have been some incremental steps by state and local governments for emergency economic relief and access to health care programs. For example, California extended its Earned Income Tact Credit to income tax files without a Social Security number. Illinois expanded Medicaid coverage to all low-income seniors including those that are undocumented. Local municipalities are working with local philanthropies to finance or to deliver benefit programs (Suro and Finding 2020). Fifteen states and the District of Columbia issue driver’s licenses to unauthorized immigrants against the standards set by Congress in the Real ID Act of 2005 (National Conference of State Legislatures 2020), and in 2019, nine states expanded employment licensing and credentialing opportunities to noncitizens without consideration of immigration status both in blue and red states 2005 (National Conference of State Legislatures 2020). Since health care is necessary for the containment and effective response to the COVID-19, the federal government was pressured to announce that it would not consider testing or treatment related to the virus in a public charge in admissibility determination, even if the state paid for it. However, many undocumented workers will not access medical services for fear of deportation as they come out of “the shadow” (Kaplan 2020). They live in fear of contracting the virus and fear of discovery. Some community organizations have reached out to immigrants through formal and informal means in their language to increase health literacy and decrease misinformation (Arfaat 2020). This also includes making screening and testing capacity, and health care provisions, available in underserved areas such as setting up mobile facilities in workplaces or neighborhoods (Cuomo 2020). Communitybased organizations have also been helping immigrant families with public resources and filling in the gaps when resources are lacking (Aliento 2020). These partnerships and grassroots efforts have improved access for communities with limited English proficiency, low digital literacy, and fear of public authorities (Lang 2020). Inclusion of undocumented workers into the social cultural and economic fabric of life will help promote the rights, health, and well-being of a global society. A global recovery plan of social inclusion will be more equipped to deal with this crisis and with the humanity to deal with the future.

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Within 48 h of his presidency, President Biden signed an executive order, “Protecting Worker Health and Safety” which directs the Occupational Safety and Health Administration (OSHA) to update and enforce COVID-19 safety guidelines. The order proclaims: Healthcare workers and other essential workers, many of whom are people of color and immigrants, have put their lives on the line during the coronavirus disease 2019. pandemic.

As he signs the proclamation, President Biden specifies that workplace safety has been a huge concern for food industry workers. For instance, workers in the meatpacking industry have been working in unsafe conditions and saying that they risked retaliation if they spoke up about it to managers. He mentions the Tyson pool of betting on workers’ risk of COVID, and states: “The federal Government must take swift action to reduce the risk to workers who may contract COVID-19 in the workplace.” This first step has given hope to immigrants and advocates. After Trump’s isolation policies, the USA has rejoined WHO under the Biden-Harris administration. The global nations can respond with a call to action to reconstruct social inclusion policies to include creative comprehensive immigration policies. World leaders need to commit to social inclusion terms, which promote moral values that guarantee human rights, protections, a path to citizenship, and benefits for immigrant essential workers. Immigrants and undocumented immigrants are part of the global fabric.

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Conclusion and Future Directions

Undocumented essential workers are human beings that thread our social fabric. Their contributions are critical to the labor force, the US and global economy, and to subsidize many American benefits through their tax payments and spending. They fill gaps in the workforce that citizens would not want, as evidenced in the USA and Europe during COVID-19. Unemployment was high and the agricultural and food industries in addition to long-care facilities could not meet the labor demands during the pandemic. Most undocumented essential workers continued to work in the farming fields, meatpacking facilities, and other critical infrastructure sectors at a very high risk of contracting COVID-19 without the necessary protection, structural social distancing, and equipment necessary to be safe. They continue to keep America and Europe fed, safe, and poised for economic recovery. Yet, US policies and anti-immigrant sentiment continues to divest immigrant populations of resources and a legal status that could be a pathway to citizenship and social inclusion. The US Congress needs to give financial relief, and a legal status as essential workers. Employers need to promote better working conditions, a steady labor force, a consistent living wage, and workmen’s compensation such as sick days, as well as access and availability to health care. These social inclusion measures can be done

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through a government, employer, and employee partnerships to promote equitable economic and health justice. This chapter is a call to action to reconstruct US immigration policies that would allow undocumented essential workers to come out of the shadows and become visible as part of the social fabric.

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Perspective of Individuals with Mental Distress Steven Davey and Sarah Gordon

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Social Exclusion, Social Inclusion, and PWMD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

The concepts of social exclusion and social inclusion are notoriously difficult to define. Indeed, to date, no consensus has been reached on the meaning of either concept. Similarly, there are no established definitions specifically based on the perspectives of people with mental distress (PWMD) themselves. A number of approaches have been taken to arrive at definitions, including a focus on rights, or participation (or both), a focus on complex social systems, a focus on subjectivity, objectivity (or both). In any case, it is likely to be important to ground the definitions in the experiences of those people who experience exclusion and inclusion. In the case of PWMD, there are likely to be a complex array of factors that feed into such experiences, to be encapsulated in definitions. The current chapter explores the current evidence base on these issues, drawing on a limited collection of studies that attend directly to the perspectives of PWMD for the purpose of further development of definitions. Finally, the implications and some suggested future focused approaches and responses to these pressing social issues are discussed.

S. Davey (*) · S. Gordon Department of Psychological Medicine, University of Otago, Wellington, New Zealand e mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_52

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Keywords

Social exclusion · Social inclusion · Mental distress · Mental illness

1

Introduction

The history of the concepts of social exclusion and social inclusion began in economic considerations, with social exclusion being a replacement concept for poverty (Silver and Miller 2006). At a basic level, social exclusion was on that account economic disadvantage, with social inclusion by implication being varying degrees of economic advantage. People with mental distress (PWMD) face high levels of social exclusion. In their case, however, a purely economic definition is, in general, inadequate since it overlooks the fact that social exclusion for PWMD also involves a loss of social status due to non-material factors. PWMD experience social exclusion due to illness (Morgan et al. 2007), negative social attitudes (Link and Phelan 2004), along with stigma and discrimination (Sayce 2001), none of which can be reduced to economic factors. For PWMD, the origins of their social exclusion may indeed be found in having received a mental health diagnosis itself. As Illich (1975, p. 96) stated: Diagnosis always intensifies stress, defines incapacity, imposes inactivity and focuses apprehension on non recovery, on uncertainty and on one’s dependence upon future medical findings, all of which amounts to a loss of autonomy for self definition. It also isolates a person in a special role, separates him from the normal and healthy and requires submission to the authority of specialized personnel.

This isolation and separation from the “normal and healthy” may be, in a general sense, the distinctive meaning of the expression “social exclusion” for PWMD. The related concept of “social inclusion” is often used as a simple reversal of the sense of exclusion – i.e., it is to be connected to others, regardless of one’s health status. In short, then, one might rush to the conclusion that social exclusion and social inclusion can be easily defined in an intuitive and general way. Given the implications of social exclusion for PWMD, such as feeling isolated and being unable to access employment, there is much at stake when trying to fully understand the meanings of these terms. Hence, in order to make genuine progress in reducing exclusion and increasing inclusion, then it is necessary to know – as precisely as possible – what should be reduced, and what should be increased. Further, it is necessary to know whether it is in principle possible – or indeed always desirable – to effect such changes. Given these considerations, the value of engaging PWMD themselves in defining the concepts has been recognized in order to “delineate exactly what the categories might mean” (Filia et al. 2018, p. 192) and what steps should be taken in relation to those categories. In this chapter, then, the definitions of exclusion and inclusion are explored while embracing the inevitable complexity involved in trying to arrive at a degree of precision, and with a particular emphasis on defining the terms from the perspectives of PWMD. In so doing, the definitions explored will include those attempting to

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capture the experience of exclusion/inclusion, either by drawing on the direct subjective (“lived”) experience of mental distress or on other informed viewpoints. The chapter concludes with a discussion of the implications and some suggested future focused approaches and responses to reducing social exclusion and increasing social inclusion.

2

Social Exclusion, Social Inclusion, and PWMD

It has been established that social exclusion and social inclusion are, in general, multilevel (i.e., they can occur at the individual, household, group, community, or institutional levels), multidimensional (i.e., they occur along social, economic, political, and historical dimensions) (Appleton-Dyer and Field 2014), and dynamic (i.e., changing by time and place; Todman et al. 2013). Beyond these general considerations, however, no clear consensus has yet been reached regarding how to define the concepts in detail. How the two concepts relate to each other is also contestable, such as whether they are polar opposites along a single exclusion-inclusion continuum, or whether they are separate dimensions (Labonte 2004; Wright and Stickley 2013). As indicated, exclusion and inclusion are often used as interchangeable opposites (Morgan et al. 2007), while other writers attempt to distinguish them (Secker 2010). In terms of the multidimensional component, Huxley and Thornicroft (2003) indicate two fundamental forms of social inclusion pertaining to the concepts of demos (the populace of a democracy) and ethnos (cultural and ethnic groups). Exclusion or inclusion in the demos pertains to one’s political engagement and citizenship, including one’s rights, whereas the case of exclusion/inclusion regarding ethnos relates to social/cultural acceptance. A mental health diagnosis may impinge severely on both or either of these aspects: in some cases, PWMD have their rights removed, and/or they may be socially ostracized. A frequent approach has been to elaborate on demos and ethnos, to say more specifically from what is someone excluded, or included in. Although, again, there is no established account of this (Morgan et al. 2007), there is recognition of the importance of employment/education (Social Inclusion Unit 2011), safe and secure housing (Huxley et al. 2012), community events and activities (Social Inclusion Unit 2011), and social networks (Huxley et al. 2012). Regarding this approach, Omtzigt (2009, p. 4) has somewhat mournfully stated of social exclusion that “definitions are caught between trying to provide an exhaustive list of everything the socially excluded is excluded from and listing the processes underlying the poverty and social exclusion.” This perhaps implies that in the well-intentioned search for detail and completeness, there is the danger of providing incoherent inventories to cover all bases; at the same time, this does little to capture the essence of exclusion/inclusion applicable to all. One well known attempt to capture the essence of inclusion is the statement, “Social inclusion must come down to somewhere to live, something to do and someone to love. It’s as simple – and as complicated – as that” (Dunn 1999, p. 23). However, as will be clear during this chapter, it is rather more complicated than that. As Illich’s statement above already implies, there is greater complexity in

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the concepts of social exclusion and inclusion than a general account would allow: much lies behind the notion of the “special role” occupied by PWMD, being separated from the “normal and healthy,” and the submission to authority. With no obvious way to define these important concepts for PWMD, some have opted for a more general articulation, such as the Social Inclusion Framework, which involves three dimensions of participation, tackling discrimination, and increasing opportunity, rather than arriving at a precise definition (Clifton et al. 2013). Nevertheless, there have been numerous attempts to offer precise definitions, some of which are more likely to relate to the case of PWMD than others, many of which draw on the same dimensions as the Social Inclusion Framework. Examples include: Social exclusion is what can happen when people or areas suffer from a combination of linked problems such as unemployment, poor skills, low incomes, poor housing, high crime, poor health and family breakdown. (Social Exclusion Unit 2004, p. 10) Social inclusion is about each person taking part in society and having control over their own resources. It is also about a community that cares for its members, makes them feel welcome and is willing to adjust to fit their various needs. (Marino Francis and Worrall Davies 2010, p. 38)

In general, contemporary definitional attempts tend toward two focal points: a rightsbased approach or a participatory approach (Curran et al. 2007). The rights-based approach lends itself to the situation of PWMD, given that a mental health diagnosis may lead to a loss of personal freedom (e.g., restricted rights regarding freedom of movement, and imposed drug treatments). The participatory approach similarly reflects the experience of PWMD, with diminished levels of participation in society resulting from physical isolation or a desire to withdraw (e.g., due to the effects of prescription drugs, or due to the experiences of mental distress itself). Diminished rights and/or participation may also encompass an economic dimension, given the possible impacts of mental distress on the ability to maintain or take up paid employment. In reality, the rights-based and participation-based considerations are not mutually exclusive. It would then be a false dichotomy to suggest that one must define the concepts of social exclusion and inclusion as a matter of either rights or participation. Indeed, some definitions have incorporated both. For example, social exclusion has been defined as “the lack or denial of resources, rights, goods and services, and the inability to participate in the normal relationships and activities, available to the majority of people in a society, whether in economic, social, cultural or political arenas” (Appleton-Dyer and Field 2014, p. 5). Similarly, the New Zealand Mental Health Commission (Cuthbert 2009, p. 6) defined social inclusion as “the extent to which people are able to exercise their rights and participate, by choice, in the ordinary activities of citizens,” and Bates and Repper (2001, p. 19) defined it as “. . .full access to mainstream statutory and post-16 education, open employment and leisure opportunities alongside citizens who do not bear [mental health] labels.” Arguably, however, the participatory approach has gained a firmer foothold in the exclusion/inclusion literature. This is perhaps due to the countability – and hence measurability – of a range of participatory acts (Morgan et al. 2007), such as the number of times someone visits friends and family, takes part in sporting activities, or displays political participation such as voting, or civic participation. A prominent example of a

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participatory definition states: “An individual is socially excluded if ...he or she does not participate in the normal activities of citizens in that society” (Burchardt et al. 1999, p. 229). In this form, however, the definition is inadequate since it overlooks the possibility that someone may simply not choose to participate (in society’s “key activities”), and without being blameworthy for this choice, thereby somehow bringing “social exclusion” on themselves. It also overlooks the powerful social forces at work when exclusion occurs. Hence, a more nuanced definition articulates social exclusion as the “. . .enforced lack of participation” (Burchardt 2000). According to this definition, an instance of social exclusion is not determined by whether someone wants or chooses to participate. Rather, it is a matter of whether the opportunity to participate is extended to them by individuals, groups, communities, and institutions. However, even with this nuance, it has been argued that the case of PWMD does not fit neatly within a participatory definition. While an enforced lack of participation implicates the wider societal processes as the driver of social exclusion, more recent criticism indicates that social exclusion and inclusion of PWMD is likely far subtler than even this refined version conveys (Davey and Gordon 2017). Based on first-hand accounts of PWMD putting on a “social mask” when around non-PWMD, Davey and Gordon et al. (2017) argue that there is a hidden conditional component of exclusion and inclusion: there are social norms that impose implicit “terms and conditions” for inclusion, which, if clearly violated, may result in exclusion. These terms and conditions can exist regardless of whether someone participates or not, or whether there are overt attempts to enforce their non-participation. In the case of PWMD, this reflects the invisibility of mental distress: someone may have a diagnosis, chooses to not disclose this (e.g., to a potential employer), and is hence able to factually participate despite the existence of enforced social terms and conditions. Regarding the previous participatory definitions, the notion that an individual would in this case be considered socially included despite the highly precarious nature of this inclusion is unconvincing and unlikely to chime with the experiences of PWMD. As a consequence, the following further refinements were suggested (Davey and Gordon 2017, p. 6): [Social exclusion is]...the enforced [socially constructed] normative conditions for [non ] participation in ‘key activities’. [Social inclusion is]. . .the unconditional opportunity [bound by legal and moral limits] for participation in ‘key activities’.

These extensions of the participatory view more explicitly integrate the importance of wider social processes in exclusion and inclusion. The “normative conditions” are the socially constructed standards and practices inherent in society that drive who is to be excluded or included; these form the basis for exclusion rather than the contingencies of participation or enforced non-participation. To be included is, on this account, to have no subtle terms and conditions attached to one’s participation in society’s “key activities” (social, cultural, economic, and political). In this way, it is possible for someone to remain socially excluded even though they factually participate, including those cases of non-disclosure where someone is not ostracized but where they would be if they were to disclose their diagnosis. Indeed, other studies have indicated that

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PWMD may strategically hide a diagnosis with the aim of inclusion: “It is citizenship with conditions. . .provisional, like I have an L plate on” (Hamer et al. 2014, p. 207). This type of attempt to define the concepts is part of a collection that emphasizes the influence of social systems, which more obviously embrace complexity than those definitions emphasizing just one or several factors. A social systems account involves a multitude of social factors, leading to exclusion/inclusion. A key pair of definitions exemplifying this approach regarding the case of PWMD comes from Sayce (2001), whose work links strongly to the social model of disability, where societal responses function as the drivers of the social difficulties experienced by PWMD: [Social exclusion involves] the interlocking and mutually compounding problems of impair ment, discrimination, diminished social role, lack of economic and social participation and disability. Among the factors at play are lack of status, joblessness, lack of opportunities to establish family, small or non existing social networks, compounding race and other dis criminators, repeated rejection and consequent restrictions of hope and expectation. (p. 121) [Social inclusion is] a virtuous circle of improved rights of access to the social and economic world, new opportunities, recovery of status and meaning, and reduced impact of disability. (p. 122)

The role of cyclical processes, vicious or virtuous, also indicates the selfreinforcing nature of exclusion and inclusion. Again, with Sayce’s view focusing on complex social forces, this opposes assumptions that the individual agent is of central importance, one who is assumed to make unencumbered – and blameworthy – choices to participate or exercise their rights. A number of further complications for attempts to define arise from within the social milieu. For instance, individuals are unlikely to be absolutely excluded or included (Levitas 2004). Rather, exclusion/inclusion may occur in some contexts but not others. While an individual with mental distress may, for example, be excluded within a paid workplace, they may be included in a community working group. Also, within the realities of the social milieu there are differing contributions, and interactions between, individual perspectives (subjectivity) and societal structures (objectivity) to inform definitions. One view is that social exclusion must be defined at the objective/structural level while social inclusion is to be defined subjectively. Regarding again the example of employment inclusion, Secker et al. (2009) point out that someone with mental distress is not socially excluded in taking up meaningful employment where structural barriers have been removed. If, however, the individual is in fact ostracized by co-workers then this situation cannot manifest social inclusion; thereby indicating the need for a subjective sense of belonging and acceptance (Onken et al. 2007). Another view takes subjectivity further, with exclusion and inclusion of PWMD both being definable as subjective states along a continuum (Parr et al. 2004, p. 205): ‘Inclusion’ denotes relations and practices that people with mental health problems perceive to signify their positive involvement in and ‘mattering’ to a local setting. . . By contrast, ‘exclusion’ denotes more negative eventualities that involve rejection, avoidance and

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distancing from other community members, such that individuals are ‘made different’ through more or less deliberate social actions reinforcing their problematic mental health status.

The subjectivity of exclusion or inclusion is subject to frequent change, with instances of inclusion morphing into instances of exclusion and vice versa: The lines between inclusion and exclusion turn out to be quite blurred, particularly in that superficially inclusionary moments cannot be taken as evidence of a deep seated inclusion ary tendency. (Parr et al. 2004, p. 405)

Subjectivity certainly presents a problem for ease of measurement (as do complex social systems accounts, which are far more logistically challenging than a participatory account), but it is likely an essential part of a complete definition of exclusion or inclusion. Faced with a lack of definitional consensus and the need to understand subjective contributions, the perspectives of PWMD need to be drawn on to inform definitions pertaining to their exclusion/inclusion. There have, however, been only a few attempts to do this. Firstly, some studies drew on the professional perspectives on PWMD perspectives; i.e., secondary accounts of mental health workers attempting to articulate the concepts of exclusion/inclusion on behalf of PWMD. Mental health nurses defined social inclusion regarding their clients as the “acceptance of individuality and the availability of choice” (Bertram and Stickley 2005). A thematic analysis of professional perspectives (Filia et al. 2018) involving academics and organizations working on social inclusion, including those working specifically on supporting the social inclusion of PWMD, indicated the importance of participation, employment/education, housing and one’s neighborhood. Further, their Delphi study found a consensus between service users, carers, and community members on the core characteristics of social inclusion. This consensus centered on participation in social activities, social supports, housing, community involvement, employment and education, health and well-being, and service utilization. Particular emphasis was placed on social support groups, the economic capability to participate in social activities, the need to reduce stigma and discrimination, and to empower individuals to help themselves in these respects. Despite being often cited in definitions as a key activity linked to inclusion (e.g., Baumgartner and Burns 2014), civic participation was not endorsed by these Delphi study participants. Also, Marino-Frances and Worrall Davis (Marino-Francis and Worrall-Davies 2010) drew on the perspectives of adult social care officers and service users to provide the definition presented at the start of this chapter, with social inclusion defined as “each person taking part in society and having control over their own resources. . .a community that cares for its members, makes them feel welcome and is willing to adjust to fit their various needs.” Continuing with direct contributions from PWMD, a New Zealand-based qualitative study (Gordon et al. 2017) drew on the perspectives of PWMD to inform the understanding of exclusion and inclusion. In line with the definitions of Sayce, the study indicated vicious cycles of social exclusion and stigma. The stigma of mental

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distress, as encapsulated in its social representation (the ways in which individuals are seen by others in society), drove social exclusion. Having been socially excluded, a person or group was further stigmatized (perhaps due to social exclusion being a marker of stigma, and thereby stigmatizing). This then reinforced the pre-existing social representation, forming a vicious cycle of stigma and social exclusion. In addition, stigma became internalized as self-stigma, and social exclusion became internalized as self-exclusion, resulting in an additional layer of compounding factors. Another study of “lived experience” of PWMD from New Zealand (Hamer et al. 2014) concluded a complex definition of social inclusion as in reality a subjective, fluid process of moving between inclusion and exclusion depending on circumstances. The authors highlighted a two-stage process of first moving beyond one’s self-stigma toward the live possibility of social inclusion, followed by increased selfconfidence in one’s right to contribute to society and a greater depth of social relationships. A key part of this second stage relates to the foregoing attempts to define social inclusion/exclusion as a matter of whether one has the right to fully participate in the community and society in which one lives. Inclusion centered on reciprocity in relationships with others, particularly family, friends, and employers. In addition to the vicious cycles highlighted by Sayce, this and the previous New Zealand based study both highlight the additional compounding problem of internalized cycles of social exclusion. Further examples from this small evidence base on the perspectives of PWMD includes a study defining social inclusion from the perspective of 150 participants (Bertram 2008), where participation, relationships, economic security and selfconfidence were prominent. Elsewhere, regaining one’s competency and finding one’s place in society were themes drawn from discussions with PWMD in recovery (Wong et al. 2014). Finally, regarding attempts to develop lists of what one is included in, or excluded from, another study used photographs to illustrate instances of inclusion from the perspectives of service users (Felton et al. 2009). Results indicated the importance of home, local amenities, the natural environment, food, sport, music, mental health community groups, service provider staff, and transport. These perspectives of PWMD and others close to them are generally encouraging, given that they are largely consistent with one another and supportive of previous definitional attempts. This includes the role of: (i) increased competency/ confidence/empowerment/choice/agency; (ii) participation in social life (although not necessarily in civic engagement); (iii) economic capability; (iv) employment and education; (v) housing and one’s neighborhood; (vi) personal relationships; and (vii) the role of support groups and services. To some degree, these definitions and attempts to clarify the concepts have subjective and objective aspects, although with the exception of confidence/agency they mostly appear to emphasize objective factors. Further, some studies supported the view of complex cyclical processes that create and maintain social exclusion, coupled with the view that these processes can become internalized, thereby exacerbating exclusion. Hence, there may be early signs that the evidence base on the social exclusion/inclusion of PWMD is moving toward a consensus that incorporates the perspectives of PWMD themselves.

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However, it must also be pointed out that there are opposing voices to much of the foregoing research. One assumption that has been challenged is that social inclusion is, without question, desirable and, thereby, an unchallengeable aim of policy initiatives. On the one hand, for instance, in Working for Inclusion (Bates 2002) social inclusion for PWMD was seen as “imperative”; on the other hand, there is also such a thing as “unfavourable inclusion” (Sen 2000), which otherwise serves to exacerbate tensions and divisions in society between the included majority and the excluded minority who may not wish to be socially included (Spandler 2007). As intimated again in the quotation from Illich (i.e., “submission to the authority of specialized personnel”), there is, then, a strongly political aspect to defining social exclusion. The following quotation goes some way in summing up these tensions: Survivors don’t necessarily want to be part of a mainstream society which has rejected them and in which they will never easily fit until society itself redresses its prejudiced attitudes and tunnel vision. Where is the problem located, in the individual who has dropped out or been excluded, or in society, which tries to force people to fit its stereotypes? ‘Social inclusion’, if we are not careful, can sound rather like ‘normalisation’, which appeared to mean making people more normal so they would fit in (Wallcraft 2001).

These viewpoints, then, raise concerns about the unquestioned value of social inclusion, and highlight the need to reflect on the drivers of exclusion. However, some PWMD go further and appear to engage in a wholesale rejection of the concept of social inclusion as meaningful. It may be seen as an instrument used by those in powerful positions, such as to coerce people out of the benefits system (Josefsberg and Bertram 2012, p. 40): Social inclusion! That’s just a government buzzword that actually means: let’s force these malingerers back into work and save the treasury money from the benefit system.

Rather than engage in the concepts of social exclusion and inclusion, those participants refocused discussion on their mental health diagnosis itself, with its associated labeling and discrimination: It is about the fact that people are discriminated against, marginalised and invalidated by people with power over us. And this especially happens by us being labelled mentally ill.

Indeed, in one of the previously cited studies from New Zealand (Gordon et al. 2017), participants tended to conflate the discussion of social exclusion with a discussion of their diagnosis and labeling, the medical model, and the effects of prescribed psychopharmaceuticals. Again, perhaps from their perspective, there really was no meaningful distinction in this respect: to be classified as “mentally ill” was intrinsically exclusionary. The Māori and Samoan participants involved in the project also reported the impacts of colonization, racial discrimination, a sense of disconnection from their own culture, or a tension between their cultural perspectives and those of the dominant “Western” culture. These cultural/racial factors compounded their experiences of mental distress, and further exacerbated their social exclusion.

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Discussion

From the 1960s, people experiencing mental distress were moved from institutionalbased care to community-based care. A 1996 review of studies of consumer perspectives of hospital versus community living found near unanimous preferences for the community. On the face of it, this transition should have addressed the main impacts of social exclusion and/or the lack of social inclusion: social isolation and loneliness, which are known to have direct negative impacts on social, mental, physical health and general quality of life (Ma et al. 2020). However, despite this, “many participants painted pictures of their lives in the community as stark, lonely, and largely devoid of meaningful activity or contact” (Davidson et al. 1996, p. 53). One of the very few favored aspects of inpatient care identified was structured social and recreational activities. In this Chapter’s foregoing review of the research, several of the identified perspectives of PWMD groups reported social inclusion as including social support groups, mental health community groups, service provider staff, and service utilization; and this perhaps reflects that this favored aspect of inpatient care (social and recreational activities) is still occurring in the community, albeit on a much smaller scale. While being of value to people, to some extent this serves to continue to limit social inclusion to engagement with others who experience mental distress and associated support people. However, if that is the only option available to people, then this needs to be acknowledged and provided for in a manner that is respectful of social inclusion being one of the functions of such engagement, while efforts are simultaneously focused on supporting more general community inclusion. In response to their experience of social exclusion, consumers themselves and others have suggested client-focused service and supports that would assist, such as a ‘map’ that provides a guide back to normal life, cognitive modification, psychoeducation/social skills training, and socialization (Davidson et al. 1996, 2010; Ma et al. 2020). A recent systematic review of the evidence in support of these interventions concluded that it is not sufficiently strong to make recommendations for practice (Ma et al. 2020). In this Chapter’s foregoing review of the research, the inclusion of the issues of self-stigma, self-exclusion, and the need for increased confidence encapsulated within several of the PWMD perspectives highlight a particular need for these phenomena to be a particular focus of interventions in support of people. While such support of individuals is important, it is equally important that interventions to address social exclusion and promote social inclusion at the societal level are also pursued. As indicated previously, this approach is championed by the social model of disability where “disability” is understood to result from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others (WHO 2017). Current societal-focused interventions primarily exist through global anti-stigma initiatives (see, for instance, Time to Change: https://www.time-to-change.org.uk/ about-us/what-we-do/time-change-global-2018-2020/global-anti-stigma-alliance/ global-campaigns). Generally, these are based on a health promotion approach to encourage attitudinal and behavioral change of particular groups within society and

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society as a whole. However, the United Nations Convention of the Rights of People with Disabilities (CRPD) serves to support taking these efforts to a whole new level. The CRPD establishes a rights-based response to the social model of disability by: • Considering that diversity and difference are part of humanity and should be valued, not rejected. • Therefore, persons with disabilities are entitled to equal rights and equal opportunities to participate in society as all other persons. • Barriers that prevent people with disabilities from participating fully in society and from enjoying their rights are discriminatory. • Therefore, people with disabilities have the right to have these barriers removed and to claim their rights (WHO 2017). The CRPD was adopted on the 13th December 2006 and opened for signature on the 30th March 2007. As at the end of 2020, 164 countries or regional integration organizations have signed (agreeing to refrain from acts which would defeat the object and purpose of the Convention) and 182 have ratified the Convention (taking an obligation under international law to implement it). Implementation involves taking action to ensure and promote the full realization of all rights contained in the Convention (Article 4). Treaty bodies monitoring other human rights treaties have indicated that appropriate measures for implementation of human rights obligations may include legislative, judicial, administrative, educational, financial, and social measures (UN Human Rights Committee, general comment No. 31, paragraph 4). Arguably, this now provides the most comprehensive framework to inform the conceptualization of social inclusion and social exclusion, particularly given the significant input that persons with impairments had into its development; and to inform all the efforts in countering stigma and discrimination, ending social exclusion and promoting social inclusion. The key principle of the CRPD of respect for diversity and difference as part of humanity directly addresses the simplest of definitions of social exclusion as being the isolation and separation from the “normal and healthy.” Arguably, the CRPD addresses both the demos and ethnos concepts by the articles of the Convention interweaving civil and political rights (such as non-discrimination or access to justice) which must be immediately realized at the time of ratification) and economic, social and cultural rights (such as the right to the highest attainable standard of health or accessible transport services), which may be realized progressively, to the maximum of available resources (Office for Disability Issues 2008). This is interesting, however, given the emphasis of PWMD perspectives being more focused on the importance of economic, social and cultural rights. It needs to be asked whether this is due to those whose perspectives were canvassed having not been in situations where their civil or political rights are being denied, or that they do not associate the concepts of social inclusion and social exclusion with these types of rights, or whether their economic, social and cultural rights are actually more important to them than their civil and political rights.

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The one area of civil and political rights that has been identified as important to PWMD can be summarized as increased competency/confidence/empowerment/ choice/agency. Attendance to these matters is addressed by Article 12 of the CRPD which requires a significant change in support of equal recognition before the law (Committee on the Rights of Persons with Disabilities 2014). Legal capacity is the ability to hold rights and duties (legal standing) and to exercise those rights and duties (legal agency). It is the key to accessing meaningful participation in society.

One of the consequences of Article 12 is a required shift from substitute decisionmaking paradigms (e.g., where others make compulsorily enforced treatment decisions based on what is considered to be in the best interests of the individual) to a paradigm that is based on supported decision-making (comprising various support options which give primacy to a person’s will and preferences and respects human rights norms). One of the most concerning findings from recent research conducted in New Zealand is the situation of young people (Kvalsvig 2018). It appears as a cyclical phenomenon that, although a direction of effect is not known is potentially cumulative, with young people (aged 15–24) reporting higher rates than other groups, for feelings of isolation, and that the activities in which they engaged were not worthwhile. Unlike for other age groups, these levels of isolation are quite evenly distributed across ethnic groups. However, those young people who identified as LGBTI were significantly more likely to report feeling isolated than their peers. The young people who felt like this were seven times more likely than their peers to report moderately severe or severe levels of depression. This affects their everyday activities and socializing more than for other groups (Wilson and Nicolson 2020). The New Zealand-based qualitative study (Gordon et al. 2017) identified the social exclusion reported by youth who experienced mental distress as being pervasive. This is a serious concern that requires urgent attention. In the first instance, one should be asking why are young people experiencing pervasive social exclusion that is a result of, or resulting in and being compounded by, mental distress. Is it possible that the impact of an emphasis on virtual-based modes of engagement is a contributing factor? Disparities are similarly experienced by Māori, the indigenous people of Aotearoa/New Zealand. Just over 40% of Māori surveyed reported some degree of recent social isolation (also considered as loneliness) and exclusion, with those having current or previous experience of mental distress being significantly more likely than those without such experience to report social isolation (69% vs. 36%) or exclusion (45% vs. 26%) (Russell 2018). This is exacerbated by the fact that Māori experience a higher burden of mental distress than non-Māori (Russell 2018). These findings led Kvalsvig (2018, p.4) to conclude that: Isolation and connectedness are key factors in both wellbeing and distress. Feeling isolated from others emerged again and again in the analyses of the. . .data as strongly associated with

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depression, anxiety and other forms of distress. Feeling isolated had a strongly negative association with life satisfaction, while strong family/whānau relationships, connections to culture, and being able to give as well as receive help were positively associated with life satisfaction.

This is consistent with the findings cited previously from Gordon et al. (2017). Through the recent Mental Health Inquiry, Māori explained that their mental health has suffered as a direct result of a long-standing alienation from their land and the impact of colonization, racism, and generational deprivation (New Zealand Government 2018). Relationships within whānau, connection to, and involvement with, culture were identified as being particularly important to Māori yet a higher proportion of youth (aged 15–24 years), compared with those of other ages, did not feel connected in this way (Russell 2018). Reconnection to land, culture, whakapapa, and history has been identified as particularly important by and for Māori (New Zealand Government 2018). The disparities identified here as being experienced by Māori and people who identify as LGBTI highlights the importance of appreciating the intersectionality of various factors that combine and compound the experience of social exclusion for particular groups. The importance of cultural connection and reconnection in support of social inclusion is a concept that is currently missing from many of the other published material on the subject; and it is highly likely to be of similar import to other indigenous and culturally diverse peoples. Notably, Article 30 of the CRPD requires that persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity.

4

Conclusion and Future Directions

The conceptual landscape for social exclusion and social inclusion is so far typified by contention and a lack of consensus. This includes the particular case of those definitions that seek to encapsulate the meanings of exclusion and inclusion for PWMD. The current chapter has presented some of the main attempts to define, such as rights-based or participation-based definitions, along with those that embrace complex social systems accounts (such as the social model of disability). Complexity seems unavoidable if definitions are to be firmly grounded in the realities of exclusion and inclusion, which exist in sets of cyclical, compounding factors, operative over multiple levels and dimensions. The need to incorporate subjectivity and objectivity in definitions is part of this complexity. The limited collection of research that draws on the perspectives of PWMD to develop the concepts appears to show some consistency regarding which components should be emphasized in definitions. This pertains to the roles of personal agency, participation, economics/ income, employment/education, housing, relationship, and support groups/services. While there are some signs of an emerging consensus along these lines, such findings should also be considered alongside perspectives that challenge the value of the concepts, such as those that recognize the possibility of coerced social inclusion.

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Finally, regarding these foregoing definitional attempts, recent developments (particularly the United Nations Convention of the Rights of People with Disabilities, CRPD) provide a comprehensive human rights-based framework that can now be used to support and inform conceptualizations and focused efforts to reduce exclusion and increase inclusion.

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Gordon, S., Davey, S., Waa, A., Tiatia, R., & Waaka, T. (2017). Social inclusion and exclusion, stigma and discrimination, and the experience of mental distress. Auckland: Mental Health Foundation of New Zealand. Hamer, H. P., Finlayson, M., & Warren, H. (2014). Insiders or outsiders? Mental health service users’ journeys towards full citizenship. International Journal of Mental Health Nursing, 23(3), 203 211. Huxley, P., & Thornicroft, G. (2003). Social inclusion, social quality and mental illness. The British Journal of Psychiatry, 182(4), 289 290. Huxley, P., Evans, S., Madge, S., Webber, M., Burchardt, T., McDaid, D., & Knapp, M. (2012). Development of a social inclusion index to capture subjective and objective life domains (phase II): Psychometric development study. Health Technology Assessment, 16(1), 1 248. Illich, I. (1975). Limits to medicine. London: Boyars Publishers. Josefsberg, S., & Bertram, M. (2012). Social inclusion: Putting concept and policy into practice, service and service user perspectives. Social Work & Social Sciences Review, 14(3), 37 49. Kvalsvig, A. (2018). Wellbeing and mental distress in Aotearoa New Zealand: Snapshot 2016. Wellington: Health Promotion Agency. Labonte, R. (2004). Social inclusion/exclusion: dancing the dialectic. Health Promotion Interna tional, 19(9), 115 21. Levitas, R. (2004). Let’s hear it for humpty: Social exclusion, the third way and cultural capital. Cultural Trends, 13, 41 56. Link, B., & Phelan, J. (2004). Fear of people with mental illness: The role of personal and impersonal contact and exposure to threat or harm. Journal of Health and Social Behaviour, 45, 68 80. Ma, R., Mann, F., Wang, J., Lloyd Evans, B., Terhune, J., Al Shihabi, A., & Johnson, S. (2020). The effectiveness of interventions for reducing subjective and objective social isolation among people with mental health problems: A systematic review. Social Psychiatry and Psychiatric Epidemiology, 55(7), 839 876. Marino Francis, F., & Worrall Davies, A. (2010). Development and validation of a social inclusion questionnaire to evaluate the impact of attending a modernised mental health day service. Mental Health Review Journal, 15(1), 37. Morgan, C., Burns, T., Fitzpatrick, R., Pinfold, V., & Priebe, S. (2007). Social exclusion and mental health: Conceptual and methodological review. British Journal of Psychiatry, 191, 477 483. New Zealand Government. (2018). He Ara Oranga: Report of the government inquiry into mental health and addiction. Wellington: Government Inquiry into Mental Health and Addiction. Office for Disability Issues. (2008). United Nations Convention on the Rights of Persons with Disabilities. https://www.un.org/development/desa/disabilities/convention on the rights of per sons with disabilities.html Omtzigt, D. J. (2009). Survey on social inclusion: Theory and policy. Oxford University Institute for Global Economic Development. Onken, S., Craig, C., Ridgway, P., Ralph, R., & Cook, J. (2007). An analysis of the definitions and elements of recovery: A review of the literature. Psychiatric Rehabilitation Journal, 31(1), 9 22. Parr, H., Philo, C., & Burns, N. (2004). Social geographies of rural mental health: Experiencing inclusions and exclusions. Transactions of the Institute of British Geographers, 29, 401 419. Russell, L. (2018). Te Oranga Hinengaro: Report on Māori mental wellbeing results from the New Zealand Mental Health Monitor & Health and Lifestyles Survey. Wellington: Health Promotion Agency/Te Hiringa Hauora. Sayce, L. (2001). Social inclusion and mental health. Psychiatric Bulletin, 25, 121 123. Secker, J. (2010). Mental health problems, social inclusion and social exclusion: A UK perspective. In D. Pilgrim, A. Rogers, & B. Pescosolido (Eds.), The SAGE handbook of mental health and illness. London/Thousand Oaks/Delhi: SAGE. Secker, J., Hacking, S., Kent, L., Shenton, J., & Spandler, H. (2009). Development of a measure of social inclusion for arts and mental health project participants. Journal of Mental Health, 18(1), 65 72.

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Sen, A. (2000). Social exclusion: Concept, applications, and scrutiny. (Social development papers no. 1). Tokyo: Asian Development Bank. Silver, H., & Miller, S. M. (2006). From poverty to social exclusion: Lessons from Europe. In C. Hartman (Ed.), Poverty and race in America: The emerging agendas (pp. 57 70). Lexington Book: Lanham. Social Exclusion Unit. (2004). Office of the Deputy Prime Minister. The Social Exclusion Unit: Office of the Deputy Prime Minister. Social Inclusion Unit. (2011). What is social inclusion? Canberra: Department of the Prime Minister and Cabinet. Spandler, H. (2007). From social exclusion to inclusion? A critique of the inclusion imperative in mental health. Medical sociology online, 2(2), 3 16. Todman, L. C., Brodyn, A., Berger, J., Willard, S., & Taylor, J. S. (2013). Evaluation of the social exclusion simulation: A training tool for professional psychology. Professional Psychology Research and Practice, 44(5), 324 330. UN Human Rights Committee (HRC), General comment no. 31 [80], The nature of the general legal obligation imposed on States Parties to the Covenant, 26 May 2004, CCPR/C/21/Rev.1/ Add.13. https://www.refworld.org/docid/478b26ae2.html Wallcraft, J. (2001). Social inclusion, strategies for living and recovery. Sainsbury Centre for Mental Health threaded discussion, 20(06), 2001. Wilson, A., & Nicolson, M. (2020). Mental health in Aotearoa: Results from the 2018 mental health monitor and the 2018/19 New Zealand Health Survey. Wellington: Te Hiringa Hauora/ Health Promotion Agency. Wong, Y. L. I., Stanton, M. C., & Sands, R. G. (2014). Rethinking social inclusion: Experiences of persons in recovery from mental illness. American Journal of Orthopsychiatry, 84(6), 685. World Health Organisation (WHO). (2017). Promoting human rights in mental health WHO Quality Rights training to act, unite and empower for mental health (pilot version). Geneva: World Health Organization. (WHO/MSD/MHP/17.2). Licence: CC BY NC SA 3.0 IGO. Wright, N., & Stickley, T. (2013). Concepts of social inclusion, exclusion and mental health: A review of the international literature. Journal of Psychiatric and Mental Health Nursing, 20(1), 71 81.

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Stigma and Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Ghanaian Perceptions of Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Vignette 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Vignette 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Impact of Mental Illness Stigmatization in Ghana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Resource Access and Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Mental Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Social Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Recommendations for Addressing Mental Health Stigmatization . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Protest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Contact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter examines challenges related to stigma, discrimination, and inclusivity faced by individuals diagnosed with mental illness in Ghana. The chapter discusses the impact of social, religious, and cultural norms arising from beliefs that mental illness is rooted in the influence of spiritual forces that impel discriminatory practices against the affected persons. Based on society’s perceptions, the treatments given to individuals diagnosed with mental illness tend to be below professional standards and expectations, as they are often marginalized and M. Mfoafo M’Carthy (*) Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, ON, Canada e mail: [email protected] J. D. Grischow Department of History, Wilfrid Laurier University, Waterloo, ON, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_53

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maltreated. The authors recommend steps that could be taken to rectify these challenges to ensure that individuals diagnosed with mental illness are respected and given a voice and the wherewithal to contribute fully to Ghanaian society. Keywords

Mental health · Stigma · Discrimination · Inclusivity · Ghana · Social exclusion

1

Introduction

Mental health is the foundation for well-being and effective human functioning (WHO 2020). It is a state of balance between physical, psychological, social, cultural, spiritual, and other interrelated components of humanity. It is a state where individuals are able to realize their own potential, cope with daily stressors, work productively and effectively, and have the capacity and ability to contribute to their community (WHO 2014, 2020). At some point in life, many individuals will experience an imbalance in their well-being and effective functioning, and it is this imbalance that may precipitate the development of mental illness or mental disorder (WHO 2020). Mental illness is a form of disability and a major health condition and it does not discriminate; it can affect any individual, family, and/or community within both the developed and developing world (Regehr and Glancy 2014). The World Health Organization (WHO) has estimated that one in four people worldwide will experience mental illness within their lifetime. Yet, despite the prevalence of mental illness, there is a significant lack of access to mental health support and treatment within the developing world (WHO 2010). According to the World Mental Health Survey conducted throughout the Americas, Europe, Middle East, Africa, and Asia, it was reported that within the developed world, up to 40% of those who struggle with mental illness do not receive any treatment. Nevertheless, within the developing world, this statistic increases to 80% and is inclusive of serious mental illness, even when associated with substantial functional disability (Gyamfi et al. 2018). The etiology/causation of mental illness has been attributed to myriad of factors. Though researchers have not agreed on the exact causation or genesis of mental illness, and biological research is furthering more insight into the disease, it has been attributed to a myriad of factors and these include the environment, genetics, trauma, and stress. Thus, Western governments and the WHO have recognized that social determinants of health/mental health provide the need to advocate for necessities like housing, food, education, and employment as a basic human right (Regehr and Glancy 2014). This chapter discusses challenges faced by individuals diagnosed with mental illness based on sociocultural and religious norms in Ghana. Beginning with a general overview of stigma (including self-stigma) and discrimination (Sect. 2), the chapter proceeds to discuss the role of Ghanaian cultural beliefs in producing stigma toward persons with mental illness (Sect. 3). Vignettes taken from field

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research are used to illustrate the main findings. Section 4 surveys the impact of stigma toward mental illness in the areas of resource access, employment, mental health care, and social exclusion. The chapter ends with recommendations on how culturally rooted stigma could be mitigated through a proactive stance from the government, policymakers, and the involvement of health care professionals (Sect. 5).

2

Stigma and Discrimination

Stigma is the single most prevalent and impactful barrier to accessing mental health support within the developing world (Avoke 2002; Agbenyega 2003; Baffoe 2013; Gyamfi et al. 2018). Stigma refers to negative and prejudicial manners in which people are labeled and treated, based upon personal qualities and/or circumstances within their societies (Agbenyega 2003; Goffman 1963). It functions as a sign of disgrace, dishonor, and separation from community, and it is intended to discredit a person with the illness (Abdullah and Brown 2011; Gyamfi et al. 2018). Stigma most commonly is associated with mental health concerns. It is prevalent worldwide and a significant public health concern at a global level (Mfoafo-M’Carthy and Sossou 2017; Gyamfi et al. 2018). Many people diagnosed with mental illness experience multiple levels of oppression: first, due to their struggles with the illness symptomology, and secondly, due to the stereotype(s), discrimination, prejudices, and oppression resulting from the stigma that are widespread throughout many societies (Corrigan and Watson 2002; Mfoafo-M’Carthy and Sossou 2017). This might include social judgement, degradation, and/or devaluation of those formally diagnosed with mental illness or labeled as having a mental illness (Abdullah and Brown 2011). Stigma could be based on a multitude of factors; this may include superstition, ignorance, lack of knowledge, lack of empathy, tradition/belief systems, and fear toward those perceived to be different (Avoke 2002; Agbenyega 2003; Baffoe 2013; Brydges and Mkandawire 2018). Stigma is characterized by shame, blame, secrecy, negative labeling, and discrimination, often resulting in stereotyping, fear, embarrassment, anger, status loss, and social isolation and exclusion (Avoke 2002; Agbenyega 2003; Barke et al. 2011; Goffman 1963). Individuals diagnosed with mental illness are at greater risk of stigmatization, especially when they are considered to have limited social skills, unusual physical appearance, and or the symptoms of the illness is evident (Abdullah and Brown 2011). Stigma is composed of stereotyping, prejudice, and discrimination, all of which have specific definitions. Stereotyping is a collectively agreed-upon judgment about a specific group, a quickly generated impression and expectation for those who are perceived to belong within the group (Corrigan and Watson 2002). This might include, for example, an impression and expectation that all people with mental illness are abnormal, unpredictable, violent, and incapable of contributing to society. Reflecting fundamentally negative beliefs, stereotyping often leads to prejudice, which can be defined as a normative and often negative mindset intended to yield an emotional response toward a specific group (Corrigan and Watson 2002;

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Abdullah and Brown 2011). The expectation that all people with mental illness are abnormal, unpredictable, and incapable may, for example, lead the community to feel discomfort and fear toward stigmatized individuals. In this case, prejudice often leads to discrimination, which the literature defines as unjust treatment, intentional and/or unintentional, of the stigmatized group based on stereotype(s) and prejudice (Corrigan and Watson 2002; Goreczny et al. 2011). Discrimination fueled by stereotyping and prejudice produces harmful results, including avoidance of persons with mental illness, social, economic, and political exclusion, and the refusal to provide mental health support within the community (Corrigan and Watson 2002; Abdullah and Brown 2011). Discrimination, which can be both obvious and subtle, also may lead to exclusion, bullying, aggression and violence, ridicule, and devaluation of the stigmatized group. In many cases – and certainly in Ghana – this encourages oppression of persons with mental illness and significantly impacts their ability to obtain housing, maintain consistent employment, access education, receive treatment and support, and experience adequate quality of life (Abdullah and Brown 2011; Baffoe 2013). Stigma can be public or self-imposed by individuals who are part of the stigmatized group. Public stigma is the reaction, or discriminatory response, of the general population toward those who are perceived to belong to a stigmatized group (Corrigan and Watson 2002; Abdullah and Brown 2011). It often results in discrimination, which is evident when a person or system – such as the government, criminal justice system, or health care system – does not place value on the stigmatized group and, due to prejudice, engages in behavior that has a negative impact upon this group (or purposively disengages from behaviors that might be positive). For example, to cite just one common scenario, an employer who does not believe that people with mental illness are competent might refuse to employ them (Abdullah and Brown 2011). This kind of discrimination, fueled by public stigma, can have a significant negative impact on the stigmatized individuals and often leads to self-stigmatization, questioning their own capabilities and worth. Self-stigma, in other words, develops when an individual internalizes negative public perceptions and prejudice (Corrigan and Watson 2002; Abdullah and Brown 2011). It is often characterized by shame, demoralization, decreased self-esteem, and diminished selfefficacy (Baffoe 2013). This may encourage an individual to believe that they are less appreciated and respected within society, based simply upon their membership of a publicly stigmatized group. Self-stigma, in turn, potentially leads individuals to engage in detrimental or selfsabotaging behavior. One example would be an individual with mental illness who does not include a cover letter with a job application, despite an explicit requirement to do so, because of their belief that they will not seriously be considered for the position. This not only guarantees that they will lose the job opportunity, it also can, and often does, result in a self-fulfilling prophecy where, because the self-sabotaging behavior produces a negative outcome, the initial reason for the sabotage is confirmed. The underlying stereotype and consequent action are thereby enforced (Abdullah and Brown 2011). This cycle is extremely prevalent and debilitating for those within stigmatized groups.

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Ghanaian Perceptions of Mental Illness

Mental illness and culture are significantly interconnected, this is because mental illness is constructed and understood based on beliefs held by the affected individuals and their family, community, and the society at large. Consequently, mental health stigma is deeply associated with culture (Abdullah and Brown 2011; Opare-Henaku and Utsey 2017), in that cultural norms influence and drive negative perceptions and discriminatory experiences, and often lead to significant mental health stigma. This impedes healthy decision-making, coping strategies, and the ability and willingness to seek professional mental health support (Opare-Henaku and Utsey 2017). This is partly demonstrated through cultural perceptions about mental illness and the etiology of mental illness. Historically, the mistreatment and injustices are within the health care system and government sectors, cultural norms/ values, and socialization. The relationship between culture and mental illness is prevalent worldwide; however, this relationship is especially detrimental in the developing world (Abdullah and Brown 2011; Quinn 2007; Opare-Henaku and Utsey 2017). The WHO has reported that the populations of low- and middle-income countries throughout Africa, Asia, and Latin America experience a disproportionate amount of mental illness and stigma compared to global averages (WHO 2013). This is very true of Ghana, where there are approximately 650,000 people with severe mental illness and 2.7 million with moderate-to-mild mental illness – representing approximately 13% of Ghana’s adult population (Oppong et al. 2016). Despite this, there is a serious and significant treatment gap for Ghanaians with mental illness. Of the approximately 3.35 million affected persons, fully 3.283 million, or 98%, are reported to have received no mental health support or treatment within their lifetime (Barke et al. 2011). To put it mildly, mental health is significantly under-resourced throughout Ghana. Institutionalization remains the primary method for addressing mental illness, and there is a marked lack of community mental health support across the country (Ofori-Atta et al. 2010). There are varied reasons for this situation, which is common across Africa. At a general level, the World Psychiatric Association has suggested that the development of mental health support is impeded throughout Africa due, at least partially, to a general lack of awareness of the burden of mental illness, as well as stigma associated with seeking mental health supports and treatments (Fournier 2011). Stigma is a significant underling barrier to treatment throughout Africa, including Ghana, and it is often based on fear and misunderstanding about mental illness. But more than the mere absence of care, in Ghana, individuals who exhibit symptoms of mental illness are among the most highly stigmatized and vulnerable in society; they are often disliked, rejected, and shunned. They are more likely to experience severe harassment and violence; and they are subject to prejudice, discrimination, and ultimately exclusion (Baffoe 2013). Within Ghana, perceptions of mental illness are influenced deeply by tradition, culture, and religion (Avoke 2002; Baffoe 2013; Quinn 2007; Mfoafo-M’Carthy and Sossou 2017; Gyamfi et al. 2018). Ghana is composed of more than two hundred

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ethnic and tribal groups and is highly traditional (Avoke 2002; Ocloo et al. 2002). Within these groups, beliefs connected to tradition are incredibly powerful and exert a significant influence over every aspect of society, including community and public perceptions of disability and mental illness (Avoke 2002). In many cases, persons diagnosed with mental illness are considered to be inhuman because traditional beliefs assign spiritual causes to mental illness: a punishment from God; a curse by an evil spirit, juju, the devil, ghosts, or witchcraft; or a consequence of the sins of family members (Avoke 2002; Gyamfi et al. 2018; Mfoafo-M’Carthy and Sossou 2017; Quinn 2007). In other words, mental illness is often perceived to arise from spiritual violations connected to traditional beliefs. The violation may have been committed by the individual with mental illness, or a member of their family, and the illness represents a lifelong punishment for that violation (Avoke 2002). In general, the degree of stigmatization toward an individual with mental illness often depends on public perceptions about whether the illness has occurred due to a fault or the behavior of the individual affected (Quinn 2007). In this sense, people with mental illness are generally perceived to be responsible for causing their own illness (Corrigan and Watson 2002; Abdullah and Brown 2011; Opare-Henaku and Utsey 2017). This leads to severe social distancing from the affected individuals, especially when the illness is perceived to be: a) the individual’s own fault, b) dangerous to other people, and c) uncommon and rare (Abdullah and Brown 2011). In Ghana, perceptions of mental illness are deeply rooted within historical, cultural, and symbolic practice(s), which have significantly influenced social and traditional norms throughout the country (Barke et al. 2011). Labeling those with mental illness to be “mentally retarded” or “mentally handicapped” is an example of a historical and cultural practice which has had a detrimental effect on those affected by mental illness (Avoke 2002). In one example, the Ewe and Ga ethnic groups of Ghana refer to those with mental illness as “Asotowo” or “Buluus,” respectively, which is translated to mean “idiot” or “fool.” The Akans, Ghana’s most dominant tribal group, use the phrase “Nea wanyin agya n’adwene ho,” which means “feebleminded” (Avoke 2002; Ocloo et al. 2002; Agbenyega 2003). These labels have been used commonly throughout Ghanaian history. Currently, they are mostly intended to be offensive and dehumanizing and are utilized to insult persons with mental illness (Agbenyega 2003; Baffoe 2013). These labels both reflect and feed into public perceptions of individuals with mental illness as dangerous, violent, and/or unpredictable, and this is heightened by the fact that most of the affected people cannot obtain mental health support and, therefore, remain untreated and symptomatic (Barke et al. 2011). They often experience guilt, concealment, isolation, and segregation; they are often perceived to be incompetent and unintelligent; they are shunned; in many cases, they even describe family and close friends as significant sources of stigma; and they may perceive their own symptomology to be founded in supernatural or spiritual sources (Gyamfi et al. 2018). This traditional model of understanding mental illness has created a multitude of systemic and societal barriers for Ghanaians diagnosed with or exhibiting symptoms of mental illness, thus resulting in widespread and pervasive stigmatization, discrimination, isolation, and social exclusion (Baffoe 2013; Quinn 2007; Gyamfi et al. 2018).

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This is also portrayed in print media where individuals diagnosed with mental illness are often described in derogatory terms. In a ten-year review of major newspapers in Ghana (Mfoafo-M’Carthy et al. 2016), the authors observed that most of adjectives used to describe individuals diagnosed with mental illness who have committed offences or acts of violence were described in derogatory terms, thus fueling society’s negative perception of these individuals. The following vignettes are an illustration of the challenges associated with dealing with family members diagnosed with mental illness in the Ghanaian society.

3.1

Vignette 1

Adjo was a 30-year-old female schoolteacher, married for almost 5 years with two children, a boy aged 4 and a girl who is 2 years old. Adjo was diagnosed with major depressive order at the age of 20 year while attending university. Coming from an affluent family, she was fortunate to see a psychiatrist who diagnosed her and provided medication. For several years, she was consistent with her medication and follow-up appointments. Upon graduation from university, she married and found work teaching in one of the elite private schools in the capital, Accra. Over the past year, according her husband, Adjo had been inconsistent with her medication compliance, believing that she had been cured. This belief had tragic consequences; six months ago, Adjo committed suicide by jumping from a five-story building. According to her family, they did not see any signs of the illness and hence her death took them by surprise. However, they did mention that a prophet prophesied over her and said her illness was caused by witches in the family. The prophet gave a bottle of concoctions and asked her to rub it on her body every morning before stepping out of the house. This may have led to her refusal to take medications, which eventually led to her death.

3.2

Vignette 2

Kwaku D was a 35-year-old successful banker and had been in the field for several years. However, his superiors reported that he recently started coming to work late without any excuse, which led to his eventual dismissal for poor performance. Family members did not know what was going on with him. He developed the habit of literally sitting and staring at the television at home. One day, his wife found him arguing with characters on the television. This was unusual and out of character for Kwaku. His wife and children did not know what to do because his behavior has become more and more bizarre and they were scared he might be a danger to himself or to the family. They were afraid and ashamed of what was happening and thus kept it from the extended family. The family became concerned and decided to take him to their pastor to be prayed for so he would be delivered from the demonic stronghold tormenting him. After spending a week at the church premises and being asked to fast and pray for several days with no progress, the family decided to take him to a traditional healer. The family believed Kwaku had been cursed by

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extended family members who are jealous of his success as a banker and hence had cast a spell on him to derail his progress. At the traditional healer’s shrine, Kwaku was given concoctions to drink and chained to a tree. He was exposed to the elements as the fetish priest attempted to cure him, but to no avail. One day, Kwaku’s wife spoke to a trusted friend who advised her to make an appointment to see a psychiatrist at the Accra Psychiatric hospital, though it took a while to make the appointment, and she was able to persuade her husband to see a psychiatrist. At the hospital, it was suggested that he be admitted for a period for the doctors to observe him to be able to give a correct diagnosis and prescription. He stayed at the hospital for about four months and eventually discharged with medication. Upon discharge, he continued meeting with the doctor on outpatient basis. Kwaku reports that he is hearing voices as he continues to take his medication and keeps up with the follow-up appointments. Six months after his discharge from the hospital, he was able to find another position in the banking industry and has been doing extremely well. Based on his experience, he has made the effort to educate others about the importance of taking care of our mental health and the need to seek professional in the event of a mental health breakdown. These two vignettes illustrate the importance of help-seeking regarding mental wellbeing. Due to the stigma associated with the illness, most families see mental illness as a demonic experience or a curse which requires the intervention of a pastor or traditional healer. It is believed that many people are abandoned by their families at church premises and shrines due to their unwillingness to be associated with the illness.

4

The Impact of Mental Illness Stigmatization in Ghana

Mental illness, stigma, and discrimination are linked very strongly to suffering, disability, and poverty (Corrigan and Watson 2002; Ofori-Atta et al. 2010). This produces a vicious cycle where perceived and diagnosed mental illness leads to stigma, which feeds into oppression and, often, poverty, which in turn further increases stigma (Barke et al. 2011). This harmful cycle does not originate from biomedical determinations of mental illness, but instead reflects socially, economically, and politically constructed oppression (Michailakis 2003). The impact on affected individuals is extremely detrimental, in that the more an individual has experienced stigma, discrimination, and oppression, the lower their self-esteem, social adjustment, and overall quality of life (Barke et al. 2011). Ghana suffers from a significant treatment gap in mental health services, wherein 98% of those affected by mental illness have received no mental health support or treatment within their lifetime (Barke et al. 2011). Of the remaining 2%, approximately 70–80% seek mental health care from informal or traditional mental health practitioners (Fournier 2011; Quinn 2007), including family members, traditional and faith/ spiritual healers, herbal preparations, and/or spiritual incantations (Ofori-Atta et al. 2010; Barke et al. 2011). It is important to acknowledge that traditional healers are preferred throughout Ghana for understandable reasons, including the scarcity of

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contemporary mental health resources and services, limited knowledge about mental illness, and the prevalence of stigma and discrimination associated with mental illness (Barke et al. 2011). However, traditional treatments can be harsh and observers have reported forced confinement (including chaining to trees), flogging, and/or incarceration within prayer camps, which are rationalized by the belief that mental illness is caused by witchcraft and can only be treated spiritually. Also, in many cases traditional care is ineffective and actually worsens the patients’ mental health, which then reduces their chances of accessing the resources and employment needed for sustainable livelihoods, as well as effective health care and social inclusion (Corrigan and Watson 2002; Fournier 2011). Each of these are discussed below.

4.1

Resource Access and Employment

Stigma toward mental illness significantly impacts the availability and accessibility of mental health support within local communities (Quinn 2007). It creates an invisible barrier preventing persons with mental illness from receiving the support they desperately need to ensure a good quality of life (Goreczny et al. 2011; Baffoe 2013; Mfoafo-M’Carthy and Sossou 2017). It also means that most Ghanaians believe that physical health should be prioritized over mental health (Fournier 2011). One result of this bias is that persons with mental illness often face reduced access to community resources and support due to discrimination and oppression and are deprived of the chance to participate fully within society (Abdullah and Brown 2011; Fournier 2011). Stigma also makes it very difficult for individuals to advocate for better services, social policies, and laws (Baffoe 2013). Elected officials do not help because government policymakers – also influenced by public stigma – place a very low priority on mental health issues (Fournier 2011). The lack of priority for mental health results in significant deprivation for those with mental illness throughout Ghana, at the individual and community levels. At the individual level, Ghanaians with mental illness often cannot find work and the lack of income due to unemployment leads to a lack of adequate housing, poor physical health, and malnourishment (Mfoafo-M’Carthy and Sossou 2017). At the community level, they suffer from a host of problems, including insufficient funding for mental health services, outdated mental health policies, a lack of mental health personnel, poor access to medications and treatment, gross violations of human rights, overcrowded institutions, a lack of community support, the absence of preventative and rehabilitation services, a lack of education and awareness within the community, and the absence of research-based evidence as a foundation for healing (Fournier 2011).

4.2

Mental Health Care

Throughout Ghana and other low- and middle-income countries in Africa, between 76% and 99% of people with serious mental illness do not have access to necessary mental health treatment and/or support (Fournier 2011; Quinn 2007). Stigma toward

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those with mental illness is a significant problem permeating the mental health system in Ghana and it undermines prevention, treatment, rehabilitation, and quality of life for those affected by mental illness (Barke et al. 2011). Not only does it reduce treatment options as described above, but the shame associated with stigmatization often prevents persons diagnosed with mental illness or exhibiting symptoms of mental illness from seeking treatment in the first place. In many cases, affected individuals also resist mental health support because they believe that acknowledging mental illness demonstrates weakness and/or failure on their part (Abdullah and Brown 2011; Barke et al. 2011). Avoiding treatment produces many negative effects, including: decreased quality of life; diminished well-being, confidence, and/or selfesteem; increased difficulty in achieving recovery, whenever possible; enhanced psychiatric symptomology; increased risk of suicide; and compounded health problems (Abdullah and Brown 2011; Barke et al. 2011; Gyamfi et al. 2018). Also, when untreated, mental illness will often advance and produce at least the following three serious potential consequences (Fournier 2011). First, the individual may become stuck in a cycle of low productivity and/or inadequate job performance, blocking them from reaching their highest potential. Secondly, the untreated person may engage in addictive and/or self-destructive behaviors to self-medicate or attempt self-treatment, or in a strategy to blunt or mask their symptoms. Finally, the individual with mental illness may die from complications connected to addiction and/or self-destructive behavior, through suicide or physical illness (Fournier 2011).

4.3

Social Exclusion

Stigma leads to severe social consequences, especially exclusion from the social life of their communities (Barke et al. 2011; Mfoafo-M’Carthy and Sossou 2017). When an individual has been stigmatized, discriminated against, and marginalized from society through economic deprivation and/or social isolation, they have experienced social exclusion. Throughout Ghana, this often arises out of generalized disrespect and discrimination, which produces bullying, aggression, ridicule, and personal and social devaluation (Goreczny et al. 2011; Baffoe 2013; Mfoafo-M’Carthy and Sossou 2017). These forms of oppression lead to ostracization and exclusion, which undermines the affected person’s ability to maintain housing, secure regular employment, access education, engage in meaningful and supportive relationships, and maintain an adequate quality of life (Goreczny et al. 2011; Baffoe 2013). Stigma also adversely affects the family system and interpersonal relationships (Barke et al. 2011). In Ghana, the family system is recognized to be a safe and loving space for every individual, but most people with mental illness remain stigmatized, discriminated against, and isolated by family, friends, coworkers, neighbors, and even romantic partners (Mfoafo-M’Carthy and Sossou 2017; Gyamfi et al. 2018). In some communities, individuals diagnosed with mental illness are locked up in rooms to prevent communities’ members from knowing who they are and the state of their condition. This situation may be due to the lack of knowledge among most Ghanaians about the causes and symptoms of mental illness and the potential

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efficacy of psychiatric medication and mental health support and treatment. Sadly, the lack of knowledge is pervasive not only in public, it also is common among trained health care professionals, including those working in mental health care, who may believe the prevalent stereotypes about mental illness. Throughout Ghana, mental illness is highly misunderstood and, by contributing to stigma, this lack of knowledge robs those with mental illness of the opportunity to increase their quality of life and their connections to family, friends, and the community. As a result, affected persons often try to conceal mental illness and/or treatment histories from family, friends, and employers, thus feeding into social exclusion through the conscious, self-imposed limitation of social interaction. The consequence of this is further rejection, exclusion, and feelings of failure (Barke et al. 2011; Abdullah and Brown 2011; Agbenyega 2003).

5

Recommendations for Addressing Mental Health Stigmatization

Stigma and discrimination against individuals diagnosed with mental illness or those exhibiting symptoms of mental illness is often perpetuated by negative and harmful societal perceptions of mental health and illness, discriminatory policies, the cultural tendency toward concealment and silence, and a deeply ingrained social system that hinders funding and seeking adequate mental health support within the community (Michailakis 2003). Because they are deeply embedded in Ghanaian society, eliminating stigma, discrimination and oppression will require a multifaceted approach with the involvement of health care professionals, policymakers, and government, as well as individuals with mental illness and their families (Gyamfi et al. 2018). Stigma, discrimination, and oppression against those with mental illness cannot be overcome without collaboration and action; together, we must challenge the way mental illness is perceived and spoken about throughout Ghana, and provide a voice for those affected (Baffoe 2013). Protest, education, and contact are three approaches that will address stigma, discrimination, and oppression against those with mental illness (Mfoafo-M’Carthy and Sossou 2017). Each of these will be discussed below.

5.1

Protest

National law, health policy, and financial spending on health care reflect the community in which they are developed, which in the case of Ghana has resulted in perpetuating the stigma, discrimination, and oppression toward mental illness that is present within Ghanaian society (Gyamfi et al. 2018). Perceptions of mental illness within a country cannot be addressed until the underlying impact of the culture is identified, understood, and challenged (Ofori-Atta, et al. 2010). Protest is an important method of challenging public perceptions of mental illness since it can raise awareness and nurture advocating for change. It can bring attention to negative and inaccurate perceptions of mental illness within Ghanaian communities, and therefore

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encourage recognition of the harmful effects of informal and/or traditional treatments. It is important to note, however, that protesting is a reactive strategy and does nothing to promote positive perception about mental health that is supported by factual evidence (Mfoafo-M’Carthy and Sossou 2017). Proactive measures are also needed. Politicians and policymakers should be held accountable and challenged to implement policies that will enhance the image and improve the conditions of individuals diagnosed with mental illness.

5.2

Education

One proactive strategy is education and training, both formal and informal (Mfoafo-M’Carthy and Sossou 2017). Most importantly, education can be used alongside (or before) protest to raise awareness, enhance information and knowledge, and increase understanding and contact between the general population and persons with mental illness (Corrigan and Watson 2002). It can also be used to support informed decision-making about mental illness, and therefore, address stigma about mental illness within the community (Corrigan and Watson 2002; Barke et al. 2011). This approach could help reduce self-stigma and stigma among mental health support personnel (including traditional Ghanaian healers) as well as the public (Corrigan and Watson 2002). Those with mental illness should be involved within this process, whenever possible, to normalize mental illness and demonstrate their capabilities, thus challenging misinformed perceptions. The campaign against stigma, discrimination, and oppression – including the exclusion of those with mental illness – should involve social education about mental health and mental illness for every individual, family, group, and community (MfoafoM’Carthy and Sossou). It is important, as well, that psychologists and social workers fully understand the harmful beliefs about and practices toward Ghanaians with mental illness. They should be highly trained in mental health diagnosis and the impact mental illness has on individuals and their communities, so that they can help raise awareness and campaign for improved mental health support/resources. This will increase public knowledge about mental health and lead to broader acceptance of mental health illness as an issue to be addressed through better formal prevention and treatment programs (Mfoafo-M’Carthy and Sossou 2017; Opare-Henaku and Utsey 2017). It is also important to note that there is a lack of research into mental illness and stigma within the developing world; therefore, additional research conducted throughout Ghana and Africa as a whole will be of crucial importance (Barke et al. 2011).

5.3

Contact

The problem of stigma in Ghana must also be addressed through increased contact between the public and persons with mental illness (Corrigan and Watson 2002; Opare-Henaku and Utsey 2017). Collaboration between mental health service

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system and the traditional and spiritual healers might help to achieve this objective, as it could provide a model of inclusion and support and increase the amount of contact the public has with mental illness – as well as decrease inaccurate information on stigma (Opare-Henaku and Utsey 2017). This would also increase the prevalence of mental health support across the country and decrease the significant treatment gap that currently exists (WHO 2014; Opare-Henaku and Utsey 2017). It also bridges the gap between the cultural belief system and the Western approach to providing services to individuals with mental health needs in the community.

6

Conclusion and Future Directions

Those who struggle with mental illness are among the world’s most vulnerable (Fournier 2011). Although stigma is a worldwide problem, the impact is significantly more pronounced in developing countries such as Ghana. This is due to: a) traditional social perspectives and beliefs about mental illness; b) extremely low budgetary allocations dedicated to mental health care; and c) the Ghanaian government’s ongoing low prioritization of mental health care (Barke et al. 2011; Abdullah and Brown 2011). Stigma toward those affected by mental illness is complex and deeply interconnected with historical, cultural, and symbolic practice (s) throughout Ghana (Barke et al. 2011). It has led to significant disadvantages for those with mental illness. It reflects socially, economically, and politically constructed oppression throughout society, in which specific physical, emotional, and intellectual differences are identified and treated in a detrimental manner (Michailakis 2003). Importantly, the treatment of individuals diagnosed with mental illness has created social exclusion among many individuals around the globe, particularly in the developing world/Global South including Ghana. It has impacted their ability to contribute to the well-being of their respective economies as they have been denied the opportunity of being gainfully employed and playing active roles in society. Ghana is relatively well resourced for mental health care, especially when compared with other countries in the region (Ofori-Atta et al. 2010). However, significant improvements must be made to reduce stigma, discrimination, and oppression connected to mental illness. This can be accomplished through a multifaceted approach, with significant involvement from health care professionals, policymakers, and government officials, as well as individuals with mental illness and their families (Gyamfi et al. 2018). The tools of protest, education, and contact can be used to achieve this goal, to address and reduce stigma and discrimination across Ghana (Mfoafo-M’Carthy and Sossou 2017). Collaborative actions are crucial. Together, we must challenge the way mental health is perceived and spoken about throughout Ghana and provide a voice and a path forward for the millions of those who are affected (Baffoe 2013). These measures would mitigate the treatment of marginalized and stigmatized individuals in society and lead to an inclusive society in Ghana and other parts of the world.

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References Abdullah, T., & Brown, T. (2011). Mental illness stigma and ethnocultural beliefs, values, and norms: An integrative review. Child Psychology Review, 31, 934 948. Agbenyega, J. (2003). The power of labeling discourse in the construction of disability in Ghana (Vol. 16). Paper presented at the Australian Association for Research in Education Conference, Newcastle, Association of Active Educational Researchers (AARE). Avoke, M. (2002). Models of disability in the labelling and attitudinal discourse in Ghana. Disability & Society, 17(7), 769 777. Baffoe, M. (2013). Stigma, discrimination & marginalization: gateways to oppression of persons with disabilities in Ghana, West Africa. Journal of Educational and Social Research, 3(1), 187 198. Barke, A., Nyarko, S., & Klecha, D. (2011). The stigma of mental illness in Southern Ghana: attitudes of the urban population and patients’ views. Social Psychiatry and Psychiatric Epidemiology, 46(11), 1191 1202. Brydges, C., & Mkandawire, P. (2018). Perceptions and experiences of inclusive education among parents of children with disabilities in Lagos, Nigeria. International Journal of Inclusive Education, 24, 1 15. Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental illness. World Psychiatry, 1, 1. Fournier, O. A. (2011). The status of mental health care in Ghana, West Africa and signs of progress in the greater Accra region. Berkeley Undergraduate Journal, 24(3), 8 34. Goffman, E. (1963). Stigma. Notes on the management of spoiled identity. New York/London/ Toronto: Simon and Schuster. Goreczny, A. J., Bender, E. E., Caruso, G., & Feinstein, C. S. (2011). Attitudes toward individuals with disabilities: Results of a recent survey and implications of those results. Research in Developmental Disabilities, 32, 1596 1609. Gyamfi, S., Hegadoren, K., & Park, T. (2018). Individual factors that influence experiences and perceptions of stigma and discrimination towards people with mental illness in Ghana. Inter national Journal of Mental Health Nursing, 27(1), 368 377. Mfoafo M’Carthy, M., & Sossou, M. A. (2017). Stigma, discrimination, and social exclusion of the mentally ill: The case of Ghana. Journal of Human Rights and Social Work, 2(4), 128 133. Mfoafo M’Carthy, M., Sottie, C. A., & Gyan, C. (2016). Stigma: Portrayal of mental health through print media in Ghana A ten year evaluation (2003 2012). International Journal of Culture and Mental Health, 9(2), 197 207. Michailakis, D. (2003). The systems theory concept of disability: One is not born a disabled person, one is observed to be one. Disability & Society, 18(2), 209 229. Ocloo, M., Hayford, S., Agbeke, W., Gadagbui, G., Avoke, M., Boison, C., Oppong, A., & Essel, J. (2002). Foundations in special education: The Ghanaian perspective. Cape Coast: Nyakod Printing Works. Ofori Atta, A., Cooper, S., Akpalu, B., Osei, A., Doku, V., Lund, C., & Mhapp Research Pro gramme Consortium. (2010). Common understandings of women's mental illness in Ghana: Results from a qualitative study. International Review of Psychiatry, 22(6), 589 598. Opare Henaku, A., & Utsey, S. O. (2017). Culturally prescribed beliefs about mental illness among the Akan of Ghana. Transcultural Psychiatry, 54(4), 502 522. Oppong, S., Kretchy, I. A., Imbeah, E. P., & Afrane, B. A. (2016). Managing mental illness in Ghana: The state of commonly prescribed psychotropic medicines. International Journal of Mental Health Systems, 10(1), 28. Quinn, N. (2007). Beliefs and community responses to mental illness in Ghana: The experiences of family carers. International Journal of Social Psychiatry, 53(2), 175 188. Regehr, C., & Glancy, G. (2014). Mental health social work practice in Canada (2nd ed.). Ontario: Oxford University Press.

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World Health Organization. (2010). Mental health and development. Retrieved February 2, 2011 from http://www.who.int/topics/mental_health/en World Health Organization. (2013). Comprehensive mental health action plan 2013 2020. Geneva: World Health Organization. Retrieved from http://apps.who.int/gb/ebwha/pdf_files/WHA66/ A66_R8 en.pdf?ua 1. World Health Organization. (2014). Mental health: A state of well being. Retrieved from http:// www.who.int/features/factfiles/mental_health/en/. World Health Organization. (2020). Mental health. Retrieved from https://www.who.int/ westernpacific/health topics/mental health.

Social Inclusion and High School Students with Vision Impairment

48

Glenda Jessup

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Importance of School Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 The Impact of Vision Impairment in School Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Early Research into the Social Aspects of School . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Later Research into the Social Aspects of School . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Teacher Perspectives on the Social Aspects of School . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Student Perspectives on the Social Aspects of School . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 An Experience Sampling Approach to Understanding Social Inclusion . . . . . . . . . . . . . . . . . . . 5.1 Curriculum Accessibility is Key to Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Linking Social Inclusion to Self Determination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Facilitating Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 The Social Challenges of Students with Additional Disabilities . . . . . . . . . . . . . . . . . . . . . 6 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Schools are places where friendships can be difficult and young people, with or without disabilities, can feel excluded. Vision impairment is uncommon in childhood. It impacts on social interactions, mobility, and the time needed to complete everyday activities. In inclusive educational settings, students with vision impairment often compare themselves, or are compared by others, to their typically developing peers, and this comparison can be negative. Thus, parents and educators continually seek to guide these students so they develop a robust sense of identity as they work alongside, and compete with, peers. Generations of students with vision impairment have felt socially isolated in inclusive educational settings. Historically the focus has been to address the social “deficits” of the student with vision impairment: changing the student G. Jessup (*) The University of Sydney, Sydney School of Health Sciences, Sydney, NSW, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_54

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rather than also looking at how the wider social environment disables. While it is challenging to “force” high school students to socially include peers, actions taken by educators can change an educational environment to be more inclusive. Using examples from a study of the social experiences of Australian high school students with vision impairment, this chapter will focus on how school social inclusion can be enhanced, including the vital role of curriculum accessibility. Students in this study described school social inclusion as being noticed, or recognized authentically, “for the way you are” and not being overlooked or ignored by staff or peers. The prime requirements were for others to: notice and not overlook them, acknowledge them as competent, and respect their autonomy. Keywords

Social inclusion · High school students · Disability · Vision impairment · Accessibility · Self-determination theory

1

Introduction

For decades, educators and parents have been concerned that students with disabilities have not been spontaneously accepted by their peers within inclusive education settings. Similarly, for decades, parents and educators have been addressing the social inclusion of students with vision impairment in these settings (Bishop 1986; de Verdier 2016; Hatlen 2004; Jessup et al. 2018a; MacCuspie 1996; Roe 2008). The social acceptance of students with disabilities by their school peers has been referred to as perhaps the greatest challenge parents and educators will face (MacCuspie 1996). The overarching concern of parents and educators is to understand how to best guide these young people so they develop a robust sense of identity as they work alongside and compete with their typically developing peers. This chapter begins with a brief overview of the education of students with vision impairment and the challenges that these students encounter in inclusive settings and how these can impact on identity development. It then provides an historical perspective on the studies of social aspects of education as a lead-in to research that suggests a contrasting focus on social inclusion: one that focuses away from deficits of the student to deficits in the wider social environment. Finally, in light of COVID-19, there is speculation on the future directions of social inclusion and high school students with vision impairment.

2

The Importance of School Social Inclusion

Adolescents spend as much waking time in school settings as they do at home. A sense of inclusion or belonging at school is important to the development of a healthy self-concept, well-being, motivation, and good academic outcomes.

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However, friendship dynamics can be difficult for many young people. Many students can feel excluded in school settings. One of the challenges in remedying social exclusion is its detection. Lack of inclusion, which includes also teasing and bullying, can manifest subtly and its victims may be unwilling, or unable, to speak up. Exclusion, unless overt, is also less likely to prompt a response from an adult or invoke negative consequences for the perpetrator. Thus, exclusion may persist for long periods of time; and defending it alone (self-defense) may be difficult, leading to further stress and isolation for a victim (Thomas et al. 2015). A consistently large proportion of students with vision impairment have reported being bullying or teased (Mason 1999; Ratcliff et al. 2016; Wolffe and Kelly 2016). In higher grades, lack of inclusion may lead to absenteeism and limited, or nonexistent, academic qualifications. The flow-on effects can impact on future networking, employment, and financial self-sufficiency.

2.1

The Impact of Vision Impairment in School Settings

Vision impairment is a term that refers to damage or disease to the eye or visual system that cannot be corrected by glasses or medication. The nature of the consequent restrictions to visual fields or visual acuities results in low vision or blindness. Vision impairment is uncommon in childhood, only around 1 in 2500 Australian children has a diagnosed vision impairment (RIDBC 2020). Until the 1970s, the majority of students with vision impairment were taught at specialist segregated residential schools. This has now changed. Currently in Australia, most children with vision impairment begin and complete their education in mainstream settings with the support of an itinerant support teacher vision (ISTV), a specialist teacher (Morris and Sharma 2011). Curriculum content is primarily displayed visually. Students with vision impairment may need to access this visual material differently to their typically developing peers. Some may use enlarged print or braille and many will utilize various software programs and assistive devices. Students may also have additional adult assistance, such as a paraeducator (teacher aide) with them in class. There is no ‘‘standard” student with vision impairment. Impairment of vision manifests differently in each individual student. Some students may have adequate distance vision but poor near vision or vice versa. Some students may have visual ability that fluctuates throughout the day and many can be affected by glare. Vision impairment impacts on the social interaction skills other people take for granted and typically learn through casual observation. To understand the complexity of peer and peer-group interactions in the various stages of development, youth with vision impairment need systematic, age-appropriate instruction in these skills. Children with vision impairment may use clues such as tone of voice to comprehend other people’s feelings, but may find it difficult to access, or reciprocate, a range of subtle, age-specific, nonverbal behaviors, and facial expressions. In a classroom, students with vision impairment may be unable to see, or keep up to speed with, the

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various in-the-moment peer-to-peer or peer-to-teacher visual interactions, such as pointing, nodding, hand raising, or smiling (Cain and Fanshawe 2020a). Impairment of vision often increases the amount of time needed to complete everyday activities and can restrict the ability to move freely in space and to track or catch moving objects. In the school context, students who use alternate formats to access visual information can take longer to complete their work and may not be as proficient at Physical Education (PE) or some curriculum sports as their peers (Khadka et al. 2012). Students may take longer to negotiate the physical classroom changes required of a high school environment. These differences can limit the extent and spontaneity of participation by students with vision impairment in various school activities. If students with vision impairment take longer to complete their academic tasks than their peers, they may have less unstructured time to hang out with, and get to know, these peers in the classroom or playground. Because vision impairment is so uncommon in childhood, children and young people with vision impairment often have few peers or role models with vision impairment. In inclusive settings, these students often need to fit in with education practice and provision suited to the majority. Consequently, these students may learn to suppress, and undervalue, their own preferences for exploring and learning about the world. Students with vision impairment who feel embarrassed by their differences may choose to minimize the impact of these difference by not revealing to others the true extent of their vision loss (Uttermohlen 1997). Others may self-exclude (often tacitly) from sports or other activities in which they feel noticeably different (Goodwin et al. 2011; Khadka et al. 2012). Staff or sighted peers may also, tacitly or explicitly, exclude students with vision impairment from certain activities (particularly competitive activities), or equate being slow in some tasks with a lack of ability or intelligence (Higgins and Ballard 2000; Worth 2013). Students with vision impairment may thus compare themselves, or be compared, unfavorably with their peers. Students with vision impairment have to learn skills in addition to those required as part of academic core curriculum. They need to complete components of an additional, globally recognized, curriculum known as the Expanded Core Curriculum (ECC). The ECC provides students with the additional knowledge and skills required to have equal access to the core curriculum. The components of the ECC are: compensatory skills, orientation and mobility skills, social interaction skills, independent living skills, recreation and leisure skills, career education, use of assistive technology and sensory efficiency skills, and self-determination (Opie 2018). Teachers and parents have raised concerns that the quality and breadth of education delivered to students with vision impairment in inclusive settings can be compromised. Class teachers are often concerned they may not have the knowledge or adequate resources or time to support students whose learning needs differ to those of the majority (Round et al. 2016). Specialist teachers are also concerned that the time constraints of the standard curriculum will impact their ability and time to teach the ECC components (Opie 2018), and in particular, its social skills

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component. Because specialist teachers lack the necessary time to teach social skills, youngsters with vision impairment can be disadvantaged socially and risk being isolated by their peers (Hatlen 2004). There are also concerns about the use of paraeducators, who are less educationally qualified, to assist students. The concern is that students may be delivered a lower quality of education than their typically developing peers. In light of these many identity and educational challenges, professionals and parents have differing opinions as to whether, and when, a young person with vision impairment should join their typically developing peers in the education system, work alongside and compete against them. Both positions acknowledge that inclusion in the wider community is the most desirable outcome of any school setting. One position is that children with vision impairment should start learning how to interact with their typically developing peers from a young age and to be integrated at the beginning of their schooling. Others argue that students need to be more fully equipped educationally and have a robust sense of identity before being expected to work alongside, compare themselves with, and compete against their sighted peers. Disability advocates have differing perspectives on the extent of the social construction of disability. These differences center on the extent to which an impairment, in and of itself, is disabling and the extent to which negative societal attitudes toward a person with an impairment disables them (Oliver and Barnes 2010). When contextualized in a school setting, these perspectives lead to questions about the extent to which a student’s impairment (of vision in this case), in and of itself, is disabling and to what degree negative attitudes and rigid structures disable the student. This leads to further questions as to what extent a student should change (or be changed) to meet what is considered “normal” within a school setting and the extent to which attitudes and structures within the school should be altered to accommodate them. Although specialist residential schools have been criticized for their often severe and austere conditions, students did not feel different to their peers and had teaching methods tailored to their needs. However, attendance at these schools meant separation from family for extended periods of time. Attendance also limited the opportunities for students with vision impairment to forge friendships in their neighborhoods and in some cases, a lack of preparedness for the demands of the noninstitutional world. Opportunities for choice and self-determination were also quite limited.

3

Early Research into the Social Aspects of School

As the placement of students with vision impairment out of specialist schools and into classes alongside their sighted peers became more common, anecdotal evidence of isolation emerged. This anecdotal evidence became the catalyst for research on the social, rather than simply academic, aspects of schooling. Early researchers focused on these social aspects of school by measuring peer acceptance using sociometric or interaction measures (e.g., Havill 1969). Their findings were similar: physical

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integration was no guarantee of social acceptance and peer interaction did not occur spontaneously. Across all grades, students with vision impairment were less accepted than their sighted peers. Although there was no strong rejection of these students, they were simply deemed less desirable as companions in the academic, physical activity, and social domains. Lack of acceptance increased, rather than decreased, over time. Sighted peers more readily accepted students with vision impairment who excelled academically or were easygoing. Importantly, early researchers also found that teachers cannot always accurately gauge the extent of a student’s social acceptance (e.g., Hoben and Lindstrom 1980; Kalabula 1991). Appelhans (1993) reviewed a number of early studies on the integration of students with vision impairment into mainstream settings and noted three areas that later researchers would also find important to the social aspects of school. First, support staff needed to stay in the background so as not to draw further attention to a student’s “handicap.” Second, specialist teachers found it difficult to teach additional disabilityspecific skills to students with vision impairment without detracting from the time needed to learn core subjects, or stressing students by adding to their workload. Third, there was a reluctance of students to use vision aids in class, a reluctance that had not been encountered in specialist schools. Importantly, Appelhans emphasized the need for teachers to positively restructure the school environment. Students with vision impairment were given little or no voice in this early research. Bishop (1986) and O’Brien (1989) were among the few researchers in this period who sought opinions from students (along with others). Bishop (1986), unsurprisingly, found that peer interaction was necessary: “Apparently, the need for social interchange between a visually handicapped student and his/her peers is an extremely critical component of successful mainstreaming” (p. 944). She also found a firm belief that the responsibility for creating social acceptance belonged to the student with vision impairment alone. She categorized the skills necessary for “success” into those that she regarded as intrinsic to the student (e.g., motivation, emotional stability, responsibility) and those that were teachable (e.g., organizational ability, independent work/study skills, problem-solving skills, and self-advocacy/ assertiveness) and noted the importance of teaching skills to students and changing attitudes in the school environment. Most of Obrien’s (1989) secondary school participants reported being happy with their school, although only half had a special friend. Students made friends by just talking to people, although some felt that schools could do more to promote friendships through the use of extracurricular activities. These students disliked having specialist teachers in the classroom and preferred they keep a low profile. The characteristics that made a teacher popular with students with vision impairment were: treating them the same as other students, recognizing their individual needs, having patience and understanding, being available, planning ahead, and having the ability to describe things clearly. Teachers felt that students with vision impairment who had a pleasant personality, did not dwell on their ‘‘handicap,” or were able to “self promote and have a go at things” (p. 47) were more popular. Teachers consistently rated a student’s level of peer acceptance more highly than did the student themselves.

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The focus of social inclusion in these early studies was largely on the deficiencies of students: their behavior, lack of initiation of peer interactions, their needs interfering with the goals of other students, or the technical difficulty of working with them. This focus on deficiency was in keeping with broader social attitudes toward people with disabilities (Oliver and Barnes 2010).

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Later Research into the Social Aspects of School

In this later period (from the mid-1990s), sociometry was no longer widely utilized. Lack of inclusion had been quantified. Researchers employed alternate research approaches and used descriptive and qualitative methodologies to provide a richer depth of understanding into the social aspects of school. These researchers described school or peer culture and climate, practices, and student characteristics that facilitated or inhibited social inclusion. Teachers were asked for their perspectives on the social aspects of school, as were the students with vision impairment.

4.1

Teacher Perspectives on the Social Aspects of School

Teachers described the vital importance of facilitating social interaction within the classroom. They noted that students who used alternate formats took longer to complete their work than their peers and this additional time requirement impinged on time for socialization (MacCuspie 1996; Riddle 2003; Saunders 2012). They also noted that teaching assistants (paraeducators) could inhibit interactions with peers and class teachers (Harris 2011). Teachers also considered how and where the additional blindness-specific skills, including social skills, could be best taught and implemented (Hatlen 2004; Opie 2018). Teachers noted that students with vision impairment had different friendship understandings than those of their sighted peers, putting greater emphasis on the provision of help and absence of teasing (MacCuspie 1996; Palmer 2006). Teachers also noted that sighted peers interpreted both lack of eye contact and lack of greeting as rudeness, and that students with vision impairment could have trouble locating friends on the playground (MacCuspie 1996; Riddle 2003). Shyness, lack of confidence, and a reluctance to stand out as being different made students reluctant to participate in class activities, initiate interactions with sighted students, or use vision aids in class (Riddle 2003; Saunders 2012). Importantly, researchers consistently uncovered gaps in the ability of class teachers to accurately assess the extent of student social inclusion or acceptance (de Verdier 2016; MacCuspie 1996). Any inclusion in classroom activities was not reflected during the unstructured times at school, including recess. Researchers found that teachers assumed students were accepted unless there was evidence of overt aggression and that isolation was difficult to identify or rectify. Teachers also believed that social acceptance was a student’s responsibility and that lack of acceptance or social isolation did not warrant intervention (de Verdier 2016; MacCuspie 1996).

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MacCuspie’s (1996) seminal study of peer culture found no strong rejection of students with vision impairment but, rather, a lack of acceptance. This she labeled as “tolerance,” equating “acceptance” with social inclusion. Acceptance was characterized by spontaneous interactions in which students with vision impairment were viewed by peers as appropriate playmates or workmates and routinely included in activities. Tolerance, in contrast, was characterized by indifference to, or ignoring, another. Students with vision impairment were outsiders in peer culture, a culture most evident outside the classroom, which relied on shared understandings and assumptions. Students with vision impairment were unaware of, or unable to conform to, many of these assumptions. Within this culture, children develop a hierarchy of status that remains stable over time. Children who develop a reputation as unpopular find this reputation difficult to shift. Additionally, students who desire to enter or remain within popular peer groups will not play with outsiders; hence, students who are outsiders generally remain isolated. MacCuspie (1996) also observed that students with vision impairment received an “inordinate” amount of help from other students, but these helping interactions did not evolve into social interactions once the help task was completed. Time constraints provided little opportunity for students with vision impairment to either reciprocate help or to socialize. Teachers assumed students with vision impairment were accepted by other students, unless other students were openly aggressive toward them. Less overt forms of isolation or rejection went unnoticed. George and Duquette (2006) presented a case study of a sixth grader, “Eric,” deemed a social success. Much of Eric’s school success was attributed to a stable home environment and parents who perpetually advocated for him at school and ensured he had many opportunities to participate in extracurricular activities. Eric’s positive personal qualities included helpfulness, strong motivation, athletic ability, and academic excellence. Eric attributed his school success to his helpfulness, academic ability, athleticism and his being able to explain his needs to others. Despite claiming Eric was socially successful, the researchers acknowledged he was avoided by other students during sports and physical activity and was unable to gain entry into the peer group he desired. Saunders (2012) investigated general education teachers’ classroom perceptions of the social challenges of middle school students with vision impairment. These teachers believed shyness inhibited students with vision impairment and made them reluctant to speak up in class, initiate interactions with peers, or use low vision aids. These teachers felt that social inclusion was easier for students who were extroverted, and more challenging for those who were introverted. Importantly, they recognized that their own attitudes and actions set the example for sighted students on how to interact with peers with vision impairment.

4.2

Student Perspectives on the Social Aspects of School

During adolescence young people transfer their allegiance from adults to peers and, in so doing, often question the views advocated by adults. Perceptions of

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competence, mutuality, and reciprocity become more important to the establishment of friendships (Sylwester 2007). Adults are less able to influence adolescent peer relationships. The social challenges in adolescence, and later school grades, differ with those encountered by students in earlier grades (de Verdier 2016; Khadka et al. 2012). Many adolescents with vision impairment have described feeling like “outsiders” in a peer culture that typically esteems sporting or academic prowess or physical attractiveness. This outsider status can be reinforced by the lack of a driver’s license, a milestone and symbol of independence (Goodwin et al. 2011; Khadka et al. 2012; Rosenblum 2000; West et al. 2004). Adolescents with vision impairment have identified the following broad areas as influencing school social experiences: (a) the use of adaptive or assistive technology and equipment, (b) relationships with staff, and (c) relationships with peers.

4.2.1 Student Perspectives on Assistive Technology and Equipment Assistive or adaptive technology includes “low tech” devices (e.g., magnifiers or telescopes) and “high tech” computer software or devices that allow students with vision impairment to access print and other visual information. Student perspectives on adaptive technology use can be essentially summarized as the tensions of a costbenefit analysis. The benefits are participation in classwork and a degree of independence. The costs can involve: standing out as different (potentially fueling teasing) (Khadka et al. 2012; Mason 1999; Saunders 2012); being slower than peers in a rapid-paced learning environment (Mason 1999; Söderström and Ytterhus 2010), not being able to digitally interact with peers (Söderström and Ytterhus 2010), and being perceived as reliant on a device (Plaskett 2015). Students with low vision have more choice as to whether or not to dispense with equipment they perceive as stigmatizing than do students who are blind. The alternatives to not using a device are reduced or nonparticipation in certain aspects of lessons, or relying on help from other people. Students with vision impairment have expressed similar tensions about using mobility canes or devices at school as they signify difference. These student preferences can result in a gap between what is prescribed by professionals and what devices students actually utilize in class. Students count the social costs, whereas professionals primarily focus on the task benefits. As students with vision impairment progress through later school years, some become more comfortable using devices, having determined the benefits to outweigh the costs. 4.2.2 Student Perspectives on School Staff Adolescents with vision impairment believe that to be accepted by their class peers they need to maintain parity with them and be able to display independence and autonomy alongside them (Khadka et al. 2012; West et al. 2004; Whitburn 2013a). For this reason, students with vision impairment have both praised and criticized the attitude and actions of staff based on whether they have felt supported by them or have felt stigmatized as different. Students have described a perpetual tension between how they view themselves, and the consequences of how staff view them,

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as a battle against stereotypes of disability. Students struggle to be seen as “ordinary” while staff have often constructed their identities as disabled and “extra ordinary” (Higgins and Ballard 2000; Plaskett 2015; Worth 2013). Adolescents with vision impairment have reported being overlooked when teachers have used inaccessible pedagogies or not provided timely or seamless access to resources. These adolescents have also reported staff having low expectations of them, providing excessive support, not understanding their emotional needs, and not listening to them (Higgins and Ballard 2000; Plaskett 2015; West et al. 2004; Whitburn 2013a). These actions and omissions have detracted from a sense of inclusion. Importantly, the negative attitudes and actions of one or two staff members in a school have overshadowed the overall school experience. Paraeducators have been described as perhaps the biggest barrier to school social inclusion. Their typical demographic (middle-aged female) has been criticized as unsuited to an adolescent environment (Whitburn 2013b). Students have commented that paraeducators restrict their autonomy and independence, can be embarrassing, hamper peer interactions, and make them feel perpetually under scrutiny (Khadka et al. 2012; Plaskett 2015; Whitburn 2013b; Worth 2013). Paraeducators who unobtrusively enabled students to access work, develop or display their skills, and act independently were more appreciated.

4.2.3 Student Perspectives on Relationships with Peers Students with vision impairment regard friendships as an invaluable part of school life, yet have found good friendships to be rare. Students have described a “tension” between how they viewed themselves and how peers view them. They have felt embarrassed or fearful about being different and needing support in class. They can feel embarrassed about not being able to recognize the faces of their peers and greet them, thus are reluctant to interact with them. They have also found it embarrassing to engage in social activities involving physical activities or sports due to their inability to catch up with the speed of the game. Students dislike their impairment and many have been subjected to vision-related teasing (Khadka et al. 2012; Plaskett 2015; Rosenblum 2000). These many social challenges can make them feel isolated. Rosenblum (1998) interviewed adolescents with vision impairment in mainstream schools who had best friends, to “enable researchers to isolate the skills and strategies these children use and to develop interventions to aid those who are unsuccessful in this area” (p. 595). The majority of these friendships began at school, through common interests, often leisure, and developed slowly over time, with their initial phases the most challenging. One third of the best friends also had a disability. Importantly, this study demonstrated that popularity and the ability to form friendships are not necessarily equated. Students with vision impairment, who regarded themselves as outsiders, strategically sought out the companionship of other students who were also outsiders. More recently, DeVerdier (2016) provided a longitudinal perspective on the school experiences of students with vision impairment. Teachers reported they could facilitate social inclusion interventions more easily in lower grades, but this ability declined with grade level. Peers assisted children with vision impairment

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more enthusiastically in lower grades but in later grades they regarded helping these students as burdensome. The students with vision impairment in later grades felt stressed keeping up with the workload, felt different from their peers, and were lonely. All the students struggled with their identity as vision impaired in a sighted environment and wanted to feel like “one of the crowd.” Parents and teachers were unaware of the extent of these inner turmoils and they were not picked up in psychometric testing. Students with vision impairment and additional disabilities reported more psychosocial problems than peers with vision impairment alone. Only two relatively recent studies present a predominantly positive perspective on school social inclusion. These are studies of students who are blind, and either athletically able (Arndt et al. 2014) or academically gifted (Wolffe and Kelly 2016). The findings from both these studies seem to validate other research showing that students who are blind are more likely to be accepted by their peers than are students who have low vision, as are students who are athletically competent or academically gifted (Bishop 1986; Gold et al. 2010; Havill 1969). However, also in keeping with the findings of other researchers, teachers in these two more positive studies were unaware of the actual extent of student bullying.

5

An Experience Sampling Approach to Understanding Social Inclusion

In a contrasting approach to the study of high school social inclusion, Experience Sampling methodology (ESM), was used to capture the social experiences of students with vision impairment both in and out of school (Jessup et al. 2017, 2018a, b). For 7 days, Australian high school students with vision impairment were signaled randomly throughout their waking hours and asked to fill out an inthe-moment survey about their activity and social interactions and to rate their perceptions of awareness, loneliness, fitting in, acceptance, and enjoyment. Students were interviewed after their survey week.

5.1

Curriculum Accessibility is Key to Social Inclusion

Students described school social inclusion as being noticed for the way you are and not overlooked or ignored by either staff or peers (Jessup et al. 2018b). One of the main findings from this study was that curriculum accessibility is key to high school social inclusion. Students ranked “doing nothing” at school as the most negative activity of the week. This lack of participation was associated with a lack of awareness, loneliness, not fitting in, and lack of acceptance (Jessup et al. 2017, 2018a). In an interview the students revealed that doing nothing occurred when class activities were inaccessible. Teachers could be using inaccessible pedagogies or visual materials, or the lesson involved sport or physical education. Sometimes students had not been given their work in time to convert it into an accessible format, being expected to catch up later. The gaps these students described were

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substantial and, in some cases, encompassed an entire lesson. The students did not always speak up as they did not want to draw attention to themselves or disrupt a lesson flow. Some had also grown weary of repeatedly speaking up so sat in silence. Accessibility, an “academic” aspect of school, directly influenced the “social” impact of school. Restricted access to resources is not a new issue for people with vision impairment or other disabilities. For decades, they have been excluded from various aspects of everyday life. This study highlighted the socially isolating impact of lack of equality of access in a school setting. Two other issues emerged as important to school social inclusion. These were (a) the link between social inclusion and self-determination, and (b) the social challenges of students with vision impairment and additional disabilities.

5.2

Linking Social Inclusion to Self-Determination

The influences on high school social inclusion easily fit within a self-determination theory framework (Ryan and Deci 2000), as they are, in essence, the basic needs for competence, autonomy, and relatedness (Jessup et al. 2018b). It is probably unsurprising that for adolescents with vision impairment, the needs for autonomy and competence feature alongside the need for relatedness as important to high school social inclusion. While relatedness is a “given” in social inclusion, the development of competence and autonomy are features of adolescence (Sylwester 2007). More surprising perhaps, is that the influences on school social inclusion mesh so easily with self-determination, a component of the Expanded Core Curriculum (ECC) already taught to these students. Self-determination theory, however, places a dif ferent emphasis on this ECC component, one that has more regard for the social context in which it is exercised. Historically, children with vision impairment had relatively limited choice or control over decisions about their life. Now they are expected, as are their typically developing peers, to make choices about issues that affect them. However, because children with vision impairment need protracted instruction to learn certain daily living skills, they can become used to being told what to do and accustomed to having other people intervene, solve problems, and make decisions for them. For this reason, self-determination skills are an essential component of the ECC. These teach students to: regulate and direct their own behavior, set appropriate goals for themselves, identify solutions to present and future problems, direct and reinforce their own behaviors, and monitor and evaluate their own performances (Agran et al. 2007). Notably, in these self-determination strategies, a student’s individual efforts are paramount.In contrast, self-determination theory highlights the role of interpersonal contexts in enhancing or diminishing self-determination or self-motivation (Deci and Ryan 2008). It widens the focus of self-determination beyond an individual’s efforts, to consider the social environment. Its thesis is that people are more motivated to engage in activities and interactions if these activities and interactions satisfy their innate needs for competence, autonomy, and relatedness. The degrees to which these basic psychological needs are supported within an environment affect

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both the type and strength of a person’s motivation. In this theory, competence is the need to experience mastery; autonomy is a sense of volition, choice, and agency (rather than independence); and relatedness is the need for relationship security and the desire to feel connected to others (Deci and Ryan 2008). This linking of high school social inclusion to self-determination suggests that the extent to which school activities and interactions fulfill a student’s innate needs for competence, autonomy, and relatedness will determine their motivation to engage actively in the experiences and interactions that will help them feel included in school. While motivation has previously been regarded as necessary to the social inclusion of students with vision impairment (Bishop 1986; George and Duquette 2006), it was often regarded as a trait of the student, rather than as being enhanced or diminished by the social environment. This finding is important to educational settings as it shifts the focus away from “deficits” of the student to a focus on the social environment and aligns with understandings of disability as created by social barriers, a social model of disability (Oliver and Barnes 2010). Another implication of this linkage is a questioning of the efficacy of teaching of self-determination skills without attention to the social environment in which they are to be exercised. It is difficult to learn skills theoretically if there promises to be little opportunity or reason to exercise these skills.

5.3

Facilitating Social Inclusion

The challenge faced by educators and parents is to support, guide, and educate young people with vision impairment so they transition to adulthood with a robust selfconcept and the skills, knowledge, and networking necessary for their future. Practitioners also need to strive toward these outcomes while constrained by time and resources. Social exclusion can be difficult to detect, so it is important to be alert to its possibility. Psychometric measures alone may not adequately capture details about social inclusion or exclusion (de Verdier 2016; Jessup et al. 2018a). It could be argued that one of the reasons social isolation has been a perpetual generational concern for students with vision impairment in inclusive settings is a historic emphasis on changing the child rather than also looking at how the wider social environment disables. Advocating for change to barriers within the social environment may be a much more difficult task than is teaching social or selfdetermination skills to an individual student. It, however, may be a more effective longer term means to facilitate social inclusion. If students with vision impairment are to feel included, they need experiences that promote competence and autonomy, as well as relatedness in school settings. School social inclusion has become explicitly linked to the need to focus beyond deficits of the student to the role of the school social environment. This finding is not conceptually new. It reflects a wider debate about the extent to which people with impairments are disabled by social and interpersonal contexts (Oliver and Barnes 2010) and the extent to which they are disabled due to their impairment.

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Social inclusion starts with the student with vision impairment being noticed by others in the school community and not overlooked. Curriculum accessibility is vital to social inclusion. A student with vision impairment will be motivated to use individual skills such as exercising choice, making decisions, and setting goals if they (self) determine a reason to use them. They are more likely to feel included in a school setting if their needs for competence, autonomy, and relatedness are met within this setting.

5.3.1 Facilitating Competence In contrast to childhood, perceptions of competence, mutuality, and reciprocity become more important to the establishment of adolescent friendships. The need for competency and to be seen as competent is congruent with the developmental stage of adolescence and the transition from primarily familial companionship to companionship with peers (Aboud and Mendelson 1996; Sylwester 2007). Although competence is important for all adolescents, because lack of ability is linked to stereotypes of vision impairment (Steer and Gale 2006; Uttermohlen 1997), competence is particularly pertinent to adolescents with vision impairment. Often competence has been regarded as a fixed trait of a child, rather than an aspect that can be nurtured and developed in all students (Dweck 2017). Competence, or “a place to shine” does not need to be restricted to the academic realm. It can also be social, for example, being particularly humorous, or being good at an extracurricular activity. Extracurricular activities provide an opportunity for students with vision impairment to share and master common interests, reciprocate help, and relate to peers away from the structures of the classroom. The value of such “nonacademic” activities can sometimes be overlooked. They are important to resilience and identity development (Jessup et al. 2010). The ability to reciprocate indicates competence. Reciprocity is not necessarily about returning identical help, but can involve help “in kind,” in another way. Staff may need to consider ways to facilitate opportunities for students with vision impairment to reciprocate the help given to them by peers. Historically, students with vision impairment have received a lot of help from their peers and have had little time or opportunity to reciprocate such help. The development of competence can be thwarted in school environments by others having low expectations of a student, being overly “helpful,” or misjudging the ability of students with vision impairment. Importantly, it is difficult for adolescents with vision impairment to appear competent when effectively sidelined in lessons due to inaccessible lesson content (doing nothing in class). 5.3.2 Facilitating Autonomy Autonomy is a sense of volition, choice and agency, a deliberate choosing to do things (Deci and Ryan 2000). The need for autonomy is congruent with the “work” of adolescence: questioning values prescribed by adults and seeking the freedom to test their own values (Sylwester 2007). The development of autonomy can be challenging for students with vision impairment as they have often, from a very

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young age, had professionals and others prescribe the ‘‘correct” way to approach the everyday tasks of life. Most high school students have little choice over curriculum content and classroom companions; however students with vision impairment often have even less autonomy in the classroom than their peers. Students with vision impairment are arguably more dependent than their peers on the actions of others to access the curriculum. Autonomy can be facilitated in the classroom, particularly through the actions of teachers and paraeducators in supporting students discreetly, prioritizing timely access to resources and timely and appropriate feedback (Cain and Fanshawe 2020b; Whitburn 2013a, b). The time constraints in a rapid-paced school environment can work against the development of autonomy. They can inhibit the scope for a teacher or paraeducator to allow time for a student with vision impairment to approach and attempt a learning task and receive appropriate feedback. It can be faster to intervene prematurely. It can be difficult for adults to persuade adolescents, with or without vision impairment, to prioritize what is in their long-term best interest over what is socially expedient in the short term. Autonomy can be seen as a backdrop to the cost-benefit analyses done by students with vision impairment as to whether or not they use low vision aids or mobility aids at school. The use of these devices may be one of the few areas over which students feel they have some choice.

5.3.3 Facilitating Relatedness Being noticed by others is a first step to relatedness. Being overlooked, diminishes a student’s sense of self and decreases their motivation to engage with school activities (Jessup et al. 2017; 2018b). While the onus is arguably on class teachers to get to know their students as individuals, peer relationships may need to be facilitated. Students need time and opportunity to develop peer relationships, preferably away from the intense scrutiny of adults. It is challenging to force adolescents to ‘‘relate” to each other. Competence, mutuality, and reciprocity are important to these relationships. As noted by Rosenblum (1998), for students with vision impairments, the early stages of such relationships can be the most challenging and, importantly, popularity and friendship are not mutually exclusive. Extracurricular activities may again prove useful. They hone in on shared interests and abilities and provide “getting to know you” time.

5.4

The Social Challenges of Students with Additional Disabilities

Over the last few decades, the causes of childhood visual impairment have changed. A majority of children with impairment of vision now have additional disabilities. Educators have traditionally had challenges supporting these young people as they do not fit neatly into a “disability” category. Many earlier researchers specifically excluded these students as they added to the complexity of a research project.

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There is emerging evidence that students with vision impairment and additional impairments experience more extensive social challenges than do their peers with vision impairment alone (de Verdier 2016; Jessup et al. 2017, 2018b). From a self-determination perspective, additional learning and support needs can increase constraints on behavior and decrease opportunities to act autonomously. These students’ life experiences may differ substantially from those of class peers, making it more challenging to informally establish common ground. Students may have more disability-related absences from school, thus impacting on peer socialization and group project tasks. These young people are also more at risk of others defining them by deficits, rather than strengths. As these young people now comprise the majority of students with vision impairment, by extrapolation, the majority of students with vision impairment may well have extensive social challenges at school. It is imperative their voices are heard.

6

Conclusions and Future Directions

Being noticed by others is a first step to inclusion. Being overlooked, by peers or school staff, diminishes a student’s sense of self and decreases their motivation to engage with school activities. Staff preparation and awareness can significantly add to the well-being of students with vision impairment. Overlooking the individual needs of these students can have a wider effect than in-the-moment exclusion of a particular student. School staff intentionally or unintentionally model values and attitudes. Their actions provide tacit assent for others in the school environment to include or exclude. Newer and evolving technologies support teacher pedagogy and student learning so it is important to understand how these impact the school social environment for each generation of students. The focus of research on the social aspects of school has, over time, evolved away from deficits of the student with vision impairment to an understanding of how the school social environment supports or thwarts inclusion. The thesis of this chapter is the need to focus more closely on how a school social environment contributes to social inclusion by supporting or thwarting the development of competence, autonomy, and relatedness. In early 2020, COVID-19 emerged as a global pandemic. One of the implications of this pandemic was a rapid upheaval in the school physical and social environment. Social distancing, remote learning and working, and a cautious sharing of spaces and surfaces have suddenly become integral to everyday life, at least until an effective vaccine is available. Covid-19 has seen a shift from a physical classroom to remote forms of learning and the need for technology that supports such class-wide learning. Many students with vision impairment were already proficient at learning and transacting work online. There are early anecdotal reports of students with vision impairment, and those who work with them, successfully meeting the challenges of this new learning environment (SPEVI 2020a, b).

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These anecdotal reports will pave the way for future research into the social aspects of school for high school students with vision impairment. COVID-related environmental changes may require new ways of thinking about, and investigating, high school social inclusion and the opportunities for students to build competence, exercise autonomy, and form relationships.

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Hatlen, P. (2004). Is social isolation a predictable outcome of inclusive education? Journal of Visual Impairment & Blindness, 98(11), 676 678. Havill, S. J. (1969). The sociometric status of visually handicapped students in public school classes. (Doctoral dissertation), Colorado State College. Higgins, N., & Ballard, K. (2000). Like everybody else? What seven New Zealand adults learned about blindness from the education system. International Journal of Inclusive Education, 4(2), 163 178. https://doi.org/10.1080/136031100284876. Hoben, M., & Lindstrom, V. (1980). Evidence of isolation in the mainstream. Journal of Visual Impairment & Blindness, 74, 289 292. Jessup, G. M., Cornell, E., & Bundy, A. C. (2010). The treasure in leisure activities: Fostering resilience in young people who are blind. Journal of Visual Impairment & Blindness, 104(7), 419 430. Jessup, G. M., Bundy, A. C., Broom, A., & Hancock, N. (2017). The social experiences of high school students with visual impairments. Journal of Visual Impairment & Blindness, 111(1), 5 19. Jessup, G. M., Bundy, A. C., Broom, A., & Hancock, N. (2018a). Fitting in or feeling excluded: The experiences of high school students with visual impairments. Journal of Visual Impairment & Blindness, 112(3), 261 273. Jessup, G. M., Bundy, A. C., Hancock, N., & Broom, A. (2018b). Being noticed for the way you are: Social inclusion and high school students with vision impairment. British Journal of Visual Impairment, 36(1), 90 103. https://doi.org/10.1177/0264619616686396. Kalabula, D. M. (1991). A pilot sociometric survey of friendships among visually handicapped and sighted pupils in an integrated secondary school in Zambia. British Journal of Visual Impair ment, 9(2), 52 54. https://doi.org/10.1177/026461969100900207. Khadka, J., Ryan, B., Margrain, T. H., Woodhouse, J. M., & Davies, N. (2012). Listening to voices of children with a visual impairment: A focus group study. British Journal of Visual Impairment, 30(3), 182 196. https://doi.org/10.1177/0264619612453105. MacCuspie, P. A. (1996). Promoting acceptance of children with disabilities: From tolerance to inclusion. Halifax: Atlantic Provinces Special Education Authority. Mason, H. L. (1999). Blurred vision: A study of the use of low vision aids by visually impaired secondary school pupils. British Journal of Visual Impairment, 17(3), 94 97. https://doi.org/10. 1177/026461969901700303. Morris, C., & Sharma, U. (2011). Facilitating the inclusion of children with vision impairment: Perspectives of itinerant support teachers. The Australasian Journal of Special Education, 35(2), 191 203. https://doi.org/10.1375/ajse.35.2.191. O’Brien, P. (1989). Mainstreaming secondary school students with visual impairments. Wellington: New Zealand Council for Educational Research. Oliver, M., & Barnes, C. (2010). Disability studies, disabled people and the struggle for inclusion. British Journal of Sociology of Education, 31(5), 547 560. https://doi.org/10.1080/01425692. 2010.500088. Opie, J. (2018). Educating students with vision impairment today: Consideration of the expanded core curriculum. British Journal of Visual Impairment, 36(1), 75 89. https://doi.org/10.1177/ 0264619617730861. Palmer, C. (2006). Children’s interpersonal awareness of friendship: A comparative study of children with vision impairment and their sighted peers. Paper presented at the Australian Association for Research in Education, Adelaide. Plaskett, L. (2015). Young people with visual impairments and their social inclusion in secondary mainstream settings: exploring perspectives of the young people, their parents and key pro fessionals. (Doctoral dissertation), UCL Institute of Education. Ratcliff, J. J., Lieberman, L., Miller, A. K., & Pace, B. (2016). Bullying as a source of posttraumatic growth in individuals with visual impairments. Journal of Developmental and Physical Dis abilities, 1 14. https://doi.org/10.1007/s10882 016 9523 z.

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RIDBC. (2020). About vision impairment. Retrieved from http://www.ridbc.org.au/blindness Riddle, B. (2003). Learning to include Pete. British Journal of Visual Impairment, 21(1), 32 33. https://doi.org/10.1177/026461960302100107. Roe, J. (2008). Social inclusion: Meeting the socio emotional needs of children with vision needs. British Journal of Visual Impairment, 26(2), 147 158. https://doi.org/10.1177/ 02646196080260020101. Rosenblum, L. P. (1998). Best friendships of adolescents with visual impairments: A descriptive study. Journal of Visual Impairment & Blindness, 92(9), 593 608. Rosenblum, L. P. (2000). Perceptions of the impact of visual impairment on the lives of adolescents. Journal of Visual Impairment & Blindness, 94(7), 434 445. Round, P. N., Subban, P. K., & Sharma, U. (2016). ‘I don’t have time to be this busy.’ Exploring the concerns of secondary school teachers towards inclusive education. International Journal of Inclusive Education, 20(2), 185 198. https://doi.org/10.1080/13603116.2015.1079271. Ryan, R. M., & Deci, E. L. (2000). Self determination theory and the facilitation of intrinsic motivation, social development, and well being. American Psychologist, 55(1), 68 78. https:// doi.org/10.1037/0003 066X.55.1.68. Saunders, A. L. (2012). Inclusion of middle school students with visual impairments in the general education classroom. (Doctoral dissertation), California Lutheran University. Söderström, S., & Ytterhus, S. (2010). The use and non use of assistive technologies from the world of information and communication technology by visually impaired young people: A walk on a tightrope of peer inclusion. Disability & Society, 25(3), 303 315. https://doi.org/10.1080/ 09687591003701215. SPEVI. (2020a). Back to business: Building online learning. South Pacific Educators in Vision Impairment, Community of Practice meeting. 5th June 2020. SPEVI. (2020b). Online learning. South Pacific Educators in Vision Impairment, Community of Practice meeting, 8th May 2020. Steer, M., & Gale, G. (2006). Blindness and social meaning: The baleful tale of Blind Freddy. The British Journal of Visual Impairment, 24(1), 34 36. https://doi.org/10.1177/ 0264619606060034. Sylwester, R. (2007). The adolescent brain: Reaching for autonomy. Thousand Oaks: Corwin Press. Thomas, H. J., Chan, G. C., Scott, J. G., Connor, J. P., Kelly, A. B., & Williams, J. (2015). Association of different forms of bullying victimisation with adolescents’ psychological distress and reduced emotional wellbeing. Australian and New Zealand Journal of Psychiatry, 50(4), 371 379. https://doi.org/10.1177/0004867415600076. Uttermohlen, T. (1997). On “passing” through adolescence. Journal of Visual Impairment and Blindness, 91(3), 309 314. West, J., Houghton, S., Taylor, M., & Kia Ling, P. (2004). The perspectives of Singapore secondary school students with vision impairments towards their inclusion in mainstream education. Australasian Journal of Special Education, 28(1), 18 27. https://doi.org/10.1080/ 1030011040280103. Whitburn, B. (2013a). Accessibility and autonomy preconditions to ‘our’ inclusion: A grounded theory study of the experiences of secondary students with vision impairment. Journal of Research in Special Educational Needs. https://doi.org/10.1111/1471 3802.12014. Whitburn, B. (2013b). The dissection of paraprofessional support in inclusive education: ‘You’re in mainstream with a chaperone’. Australasian Journal of Special Education, 37(2), 147 161. https://doi.org/10.1017/jse.2013.12. Wolffe, K., & Kelly, S. M. (2016). Beyond reading & writing: Technology, social and living skills of a select group of academically capable blind students in the U.S. The Educator, 29(2), 18 30. Worth, N. (2013). Making friends and fitting in: A social relational understanding of disability at school. Social & Cultural Geography, 14(1), 103 123. https://doi.org/10.1080/14649365.2012. 735693.

Stigma, Discrimination, and Human Rights Violations of People Living with Mental Illness in India

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 990 2 Stigma, Discrimination, and Human Rights Violation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 991 3 Experiences of Stigma and Discrimination in the Lives of Individuals Living with Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 992 3.1 Indian Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 992 3.2 Experiences of Stigma and Discrimination Among Family Members in India . . . . . 994 4 Intersectionality of Stigma and Discrimination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 995 4.1 Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 995 4.2 Social Class and Caste . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 995 4.3 Urban vs Rural . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 996 5 Human Rights Violation of Persons Living with Mental Illness in India . . . . . . . . . . . . . . . . . 996 5.1 Evolution of Mental Health Rights in India . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 997 5.2 Implications of Mental Health Care Act (MHCA) 2017 on Stigma . . . . . . . . . . . . . . . . 997 5.3 Implications for Stigma Toward Mental Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 999 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1000 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1002

Abstract

This chapter provides an overview of mental illness, discrimination, and human rights violation as experienced by people living with mental illness in India. Beginning with international definitions of stigma, discrimination, and human rights the chapter traces the sociocultural meanings of mental illness, its causes, and the impact such social constructs have on health seeking behavior among people with lived experiences in India. It describes the unique role played by families as caregivers and perpetrators of violence and abuse of people with mental illness while also being at the receiving end of stigma by association. S. Paul (*) Mental Health Researcher, Toronto, ON, Canada C. Dasgupta Social Science Researcher, Singapore, Singapore © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_55

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The chapter further explains constraints that impinge on treating mental illness in India including lack of mental health education, barriers to treatment, and lack of mental health resources and infrastructure. The chapter also identifies intersectionalities of mental illness with gender, social caste and class, and the urban/rural divide that deepens the experiences of mental illness stigma. Finally, the Mental Health Care Act 2017 that aims to align India’s mental health policy with the United Nations Conventions on the Rights of person with Disability 2006 will be reviewed. Implications of the Act on stigma and recommendations for addressing the vicious cycle of stigma, discrimination, and human rights violation are discussed. Keywords

Stigma · Discrimination · Human rights violation · Intersectionality · Indian perspective · Mental Health Care Act 2017

1

Introduction

In the past few decades, it is being increasingly demonstrated that mental illness has an identifiable social distribution and that elements of each kind of mental disorder and social cultural factors are inevitably interdependent with regard to causation, labeling, classification and response. The reason that mental health research has escalated so much is because over time there has been a significant rise in mental health problems across the world and are known to cause significant degree of disability (Vindhya et al. 2001). Between 1990 to 2017, one in seven people from India have suffered from mental illness ranging from depression, anxiety, to severe conditions such as schizophrenia (https://health.economictimes.indiatimes.com/news/industry/what-india-must-doto-solve-its-mental-health-crisis/74314862#:~:text¼Moreover%2C%20between% 201990%20to%202017,under%20a%20mental%20health%20epidemic). India is facing a mental health epidemic, wherein poor mental health awareness and stigma around mental illness are leading to a vicious cycle of shame, suffering, and isolation. Stigma has been often identified as a single barrier contributing to poor access to health care, opportunities for employment, education, housing, legal aid, and health social relationships (Angermeyer and Matschinger 2003). Individuals with lived experiences of mental illness are often doubly challenged. While on the one hand they struggle with the illness symptoms, medication, and so on, on the other hand they are challenged by the prejudices and stereotypes associated with mental illness (Corrigan and Watson 2002). This chapter provides an overview of stigma, discrimination, and human rights violation as faced by people living with mental illness with an intersectionality approach, discusses the inequalities that mental illness stigma and discrimination create in their and their families lives, and discusses the Mental Health Care Act of 2017.

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Stigma, Discrimination, and Human Rights Violation

The word “stigma” originates from Greek word‘stigmata that referred to bodily signs designed to expose something unusual and bad about the moral status of the signifier. These signs indicated a blemished person who should be avoided, especially in public spaces. Today, the term stigma is widely used and applied more to the disgrace itself rather than to the bodily evidence of it (Goffman 1963). Goffman (1963) defines stigma as an attribute that is deeply discrediting and the person carrying that stigma is different from the rest or of less desirable kind (Goffman 1963) and different from the ones who are “normal” (Goffman 1963, p. 5), that is, those who do not carry the stigma. Link and Phelan (2001) emphasize that stigma of mental illness is something in the person rather than a tag or a designation that others affix to the person, thereby producing rejection and exclusion. There are three components that constitute stigma – stereotypes, prejudice, and discrimination (Corrigan and Kleinlein 2005, p. 17). While stereotype is essentially a knowledge structure that is learned by many within a society, it is social in nature because many people can collectively identify with the stereotype; in this case people generally tend to have a negative stereotype against people living with mental illness. Prejudice, on the other hand, is the agreement that the general population endorses toward those negative beliefs against people with mental illness. Prejudice that is essentially evaluative in nature and a cognitive and affective response which leads to discrimination. Corrigan and Kleinlein (2005) describe stigma to be of two kinds: public stigma and self-stigma. So while public stigma is characterized by the reaction that the general population has for people living with mental illness, self-stigma is marked by internalization of those negative public reactions by the person with mental illness and their response to those feelings. This means that public stigma has its ramifications more in the public life of the individual like access to rightful life opportunities, access to health system (Corrigan and Kleinlein 2005) whereas self-stigma impacts the person’s self-esteem and confidence. Gallo (1994), who coined the term self stigma, emphasizes that self-stigma has long-lasting and dampening effects on one’s self-esteem. The intertwined linkage between stigma and discrimination is perhaps best explained by Link and Phelan (2001, p. 365) who, like Goffman (1963), use a set of relationships to expand the concept of stigma. According to Link and Phelan (2001), stigma exists when people distinguish and label human differences, and dominant cultural beliefs link labeled people to undesirable characteristics – to negative stereotypes. This process leads to placing people in distinct categories resulting in some degree of separation between “US” and “THEM,” wherein stigmatized individuals are seen to be and are referred to by their label (e.g., “a manicdepressive” or “a schizophrenic”). Henceforth, the labeled individual experience status loss and discrimination that leads to unequal outcomes. World Health Organization (2001) operationalizes stigma as attitudes and behaviors that result in an individual being rejected, discriminated, or excluded.

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Stigma, discrimination, and rights violation are interrelated, reinforcing, and legitimizing each other. Stigma lies at the root of discriminatory actions, leading people to engage in actions or omissions that harm or deny services or entitlements to others. Discrimination can be described as the enactment of stigma. In turn, discrimination encourages and reinforces stigma (Aggleton et al. 2005). Discrimination results in violation of human rights (Aggleton et al. 2005; Paul 2018). Stigmatizing and discriminatory actions, therefore, violate the fundamental human rights in general and right to freedom from discrimination specifically. In addition to violation of human rights in itself, discrimination directed at people living with mental illness leads to violation of other human rights, such as the right to health, dignity, privacy, equality before the law, and freedom from inhuman, degrading treatment or punishment.

3

Experiences of Stigma and Discrimination in the Lives of Individuals Living with Mental Illness

The stigma surrounding mental illness is a complex issue and has been found to create barriers in various aspects of a person’s life (WHO 2001). These negative attitudes and stereotypes of common people including healthcare professionals result in creating barriers such as difficulty maintaining social relationships, obtaining housing, securing, and sustaining employment and accessing healthcare (Corrigan and Watson 2002; McDaid 2009). In particular, individuals diagnosed with mental illness such as schizophrenia experience stigma in the context of interpersonal relationships, access to social roles, societal stereotypes, and images about mental illness and in accessing quality services (Schulze and Angermeyer 2003).

3.1

Indian Context

A national survey conducted in eight cities of India (n ¼ 3556) revealed that 47% indicated high judgment against people perceived as having a mental illness. This segment (47%) of the general population was relatively more aware of mental illnesses and their associated symptoms, yet they displayed stigma against people with mental illness. They sympathized with people with mental illness and voiced the need for equal job opportunities for them; however, they themselves preferred to keep a safe distance (The Live Love Laugh Foundation 2018). This survey also revealed that 26% indicated fear of people living with mental illness living in their neighborhood and interacting with them (The Live Love Laugh Foundation 2018). In India, individuals living with schizophrenia face stigma in the context of marriage, acceptance by neighbors resulting in a tendency to maintain secrecy around the mental illness status (Thara and Srinivasan 2000). People living with mental illness are often not well accepted by community and experience indignity and loss of respect, mockery or are teased by others, and at times scolded and rebuked (Koschorke et al. 2014). They also experience discrimination at work and

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family settings (Shrivastava et al. 2011). In some instances, people with mental illness experience physical (Paul 2016, 2018), emotional, and sexual abuse (Koschorke et al. 2014; Paul and Nadkarni 2014). Tendency to maintain secrecy around mental illness to obtain employment, get married, or housing is strongly seen among people living with mental illness (Loganathan and Murthy 2008). People diagnosed with schizophrenia, in particular, experience disrespect and devaluation at their workplace and loss of jobs due to their mental illness (Paul 2018). Stigma is also experienced in terms of use of derogatory words such as “mad,” “crazy,” “mental,” “retard,” “stupid,” “careless/irresponsible” to describe an individual living with mental illness (Paul 2016, 2018; The Live Love Laugh Foundation 2018). Lack of knowledge (Shrivastava et al. 2011; Trani et al. 2015) and myths about causation of mental illness – for example, mental illness is caused due to loss of semen or vaginal secretion, less sexual desire, or excessive masturbation or polluted air contribute to mental illness stigma (Kishore et al. 2011). Similarly, evidence indicates that nature and symptoms of the mental illness, particularly schizophrenia, often contribute to stigma (Shrivastava et al. 2011). A study from India, suggested that 51.4% of common people believe that former mental patients are incapable of taking care of children and that accessing mental health care is a sign of personal failure and weakness (42.7%) (Böge et al. 2018). Generally, people harbor more negative attitude toward a person diagnosed with psychotic illness as compared to depressive disorders (Kermode et al. 2009). These acts of stigmatization and discrimination stem from attitudes that are largely socioculturally constructed, wherein generally people tend to perceive a person with psychotic illness as “dangerous” thus resulting in greater social distancing (Kermode et al. 2009). Therefore, experiences of mental illness stigma and discrimination also need to be understood from the sociocultural lenses. India is a culturally diverse country, and mental illness is perceived in varied lenses. While some view mental illness from a biomedical perspective, there are many who view mental illness using traditional concepts such as Ayurveda (Kermode et al. 2009) and attribute the causation of mental illness to religious explanation like supernatural powers (Kermode et al. 2009), evil and spirit possessions, and result of misdeed or “karma” (Padmavati et al. 2005; Wagner et al. 1999) or God’s punishment for past sins (Kishore et al. 2011). The whole paradigm to view mental illness lies within a huge spectrum ranging from biomedical explanations of mental illness to traditional beliefs of “ghost” possessions and that healing procedures are effective (Wagner et al. 1999, p. 430). These beliefs often contribute to delayed mental health help seeking and treatment, as people turn to faith healers, instead of health professionals (Kishore et al. 2011). Stigma toward people living with a mental illness is a known barrier to building therapeutic relationships between clients and healthcare providers (Corrigan et al. 2014). Like in many parts of the world, in India too, stigma toward and discrimination against people with lived experiences of mental illness is an important barrier in mental health help seeking and impedes timely diagnosis and treatment for mental disorders, serves as an impediment to recovery and rehabilitation, and ultimately reduces the opportunity for fuller participation in life (Shidhaye and Kermode 2013). Further, seeking mental health care through traditional means such as visiting a psychiatrist and psychologist is

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perceived as “weakness” or personal failures (The Live Love Laugh Foundation 2018) indicating the need for normalization of mental health, as well as for more open dialogue around the subject, so as to increase awareness and reduce stigma to make a positive change in the attitudes of the general population

3.2

Experiences of Stigma and Discrimination Among Family Members in India

In India, family members and caregivers also experience high levels of stigma due to the presence of a family member with mental illness. This kind of stigma termed as “courtesy stigma” (Goffman 1963) involves stigma that spills over to the family. In India, families, caregiving for individuals with mental illness, often feel uncomfortable to disclose about mental illness and high levels of stigma is associated with positive symptoms of the illness in the individual (Koschorke et al. 2017). Caregivers also share similar concerns to that of the person with lived experience, that the disclosure would have a negative impact on the person’s ability to meet role expectations in life areas of social salience, particularly marital prospects. At the same time, caregivers also find their own and other family members’ prospects for marriage and respect by their in-laws threatened by “others finding out ” (Koschorke et al. 2017, p. 71). Caregivers also experience loss of status and social distancing by community due to the presence of a family member with mental illness (Koschorke et al. 2017). A case study from Southern India reported that a family faced serious discrimination in their village in terms of social ostracization because people considered the family was under the attack of evil spirits and ill treatment by other (e.g., children threw stones at the home) (John et al. 2015). In India, families are perceived as the main source of help seeking to deal with a condition such as mental illness (Chowdhury et al. 2019). Families feel a moral responsibility to take care of their family members even during their illness (Paul and Nadkarni 2014; Thara and Srinivasan 2000). And face the brunt of mental illness stigma. Mental illness stigma often becomes a burden for caregivers when caregiving individuals with mental illness impedes overall mental and physical well-being of the caregiver (Venkatesh et al. 2016). Evidence suggest that, in India, families can both act as receiver and perpetrator of stigma toward and discrimination against the person living with mental illness (Paul and Nadkarni 2014). For example, a study conducted in Southern India reported that families seldom provide emotional comfort to their ill family member in terms of listening to their suffering, being respectful, providing a safe and nonthreatening environment, and encouraging to build or maintain social relationships by offering them the opportunity to attend social events, interacting with neighbors (Vijayalakshmi et al. 2012). Factors such as (a) family’s poor knowledge about mental illness, (b) limited resources and skills to manage and meaningfully engage the person with mental illness, (c) caregiving burden, and (d) minimal respite opportunities are some of the reasons that contribute to family’s caregiving burden often resulting in stigma toward and discrimination against the ill family member.

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Intersectionality of Stigma and Discrimination

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Since mental illness stigma overlaps with other factors of inequality and webs of power, researchers are gradually considering different ways to investigate stigma and analyze it. Given stigma links to historical and contemporary manifestations of inequality, power, and systems of domination, intersectionality offers a promising theoretical approach to examine research on stigma (Jackson-Best and Edwards 2018). Originally used in feminist theory to describe Black women’s positions within webs of power, intersectionality has been taken up by health sciences researchers to help deepen their analyses of structural and systemic issues in health, and the inequalities and inequities they create. The theory highlights how multiple oppression and structural inequalities exist in matrices of domination, which in turn reinforce unequal relationships of power among people; and between people and social institutions such as healthcare, housing, and the law (Crenshaw 1991; Jackson-Best and Edwards 2018).

4.1

Gender

One of the factors that intersect the experiences of mental illness stigma and discrimination is gender. In India, women, in particular (Thara and Srinivasan 2000; Trani et al. 2015; Venkatesh et al. 2015), and younger people experience greater stigma in marriage, pregnancy, and childbirth (Loganathan and Murthy 2011). Women diagnosed with schizophrenia, in particular, experience desertion (unlawful separation) and are deprived of alimony from their spouses, thereby making their situation doubly vulnerable (Thara et al. 2003). While women are often deprived of their marital homes and denied property rights on grounds of mental illness (Paul 2018), men living with mental illness experience difficulty in getting married, seeking employment, and face ridicule and shame (Loganathan and Murthy 2011). Maitra (2005), in her study of the mental health institutions in western India, highlighted that mental hospitals are often used as dumping grounds to abandon women with mental illness, by the family members. For both men and women, the impact of stigma involves the perception of reduced ability to meet their expected gendered roles, thereby experiencing self-stigma. Further, gender stereotypes play a significant role in mental health help seeking, wherein men are reluctant to access traditional mental healthcare services due to fear of being labeled as “weak ” (Paul 2016).

4.2

Social Class and Caste

Studies from India suggest that people belonging to high social class tend to have higher stigma. This might be because they are more concerned with their status and reputation compared to people from relatively lower social class (Venkatesh et al. 2015). People living with mental illness from lower castes such as scheduled caste

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(SC), scheduled tribes (ST), and other backward class (OBC) experience greater stigma and discrimination (Trani et al. 2015). In general, people with mental illness who are unemployed and poor are more vulnerable to experience stigma and discrimination (Trani et al. 2015). Poverty results in deprivation of their basic needs for food, clothing, housing, and necessary access to treatment and disadvantages them in basic rights fulfillment.

4.3

Urban vs Rural

Shame and tendency to maintain secrecy around mental illness is often more profound among individuals living with a mental illness in urban areas in India as compared to those living in rural areas (Loganathan and Murthy 2008), where people were ridiculed for their mental illness. This shame combines with culturally inappropriate services to reduce help-seeking from mental health services, friends, and families (Knifton 2012). Likewise, one study reported that (Jadhav et al. 2007) rural people took more punitive measures against a person with mental illness in their acute phase of the illness (e.g., calling police), while urban people showed a more sympathetic attitude toward persons with mental illness. On the contrary, urban people were more reluctant to work with people diagnosed with mental illness (Jadhav et al. 2007) but rural people did not show such attitudes. As well, the belief in special powers “to heal, to predict future events, to cause illness” was associated with more overall stigma in the urban people but less overall stigma among rural (Jadhav et al. 2007). Rural Indians showed a more stigmatizing attitude toward severe mental illness and a tendency to avoid social interactions with people living with mental illness in domains of marriage, social relationship, and involvement in educational roles (Jadhav et al. 2007). It is clear that social determinants of health such as gender, social class, and income and culture not only affect the level of vulnerability but also mental health outcomes.

5

Human Rights Violation of Persons Living with Mental Illness in India

Although people with mental illness are entitled to all the rights and freedoms set forth in the international human rights instruments without discrimination, such as the rights to life, liberty, security of the person, privacy, health, education, work, social security, and to marry and found a family, evidence suggests that globally they encounter human rights violations in various forms (Gostin 2000). India is no exception. In India, individuals living with mental illness are entitled to enjoy all the rights guaranteed by the Indian constitution and specifically including the rights set out in the International Covenant on Civil and Political Rights (ICCPR) and the rights recognized in the United Nations Conventions on the Rights of person with Disability (UNCRPD) 2006.

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Evolution of Mental Health Rights in India

On 1 October 2007, India ratified the UNCRPD and thereby agreed to implement the rights and guarantees provided in it and change existing laws in order to confirm the principles of the Convention. India’s legal framework related to mental illness prior to this was part of the pre-independence era. The Indian Lunacy Act 1912 was the first law governing mental health in India. It was custodial in nature and paved the way for the Mental Health Act (MHA) in 1987. The MHA of 1987 however fell short in addressing human rights issues of people living with mental illness. The activists questioned the constitutional validity of the MHA 1987 because decisions regarding curtailment of personal liberty required no judicial approval. Moreover, the MHA 1987 did not provide any direction to the care and rehabilitation of a person with mental illness after their discharge from mental health institutions (Firdosi and Ahmad 2016). Eventually, with such criticisms mounting toward the MHA 1987, the Mental Health Care Bill 2013 was introduced and finally passed by the Parliament of India in 2016.

5.2

Implications of Mental Health Care Act (MHCA) 2017 on Stigma

The Mental Health Care Act 2017 (MHCA, 2017) replaced the MHA 1987 in order to fulfill the rights of persons living with mental illness under the United Nations Conventions on the Rights of Persons with Disabilities 2006. The aim of the MHCA 2017 was to protect, promote, and fulfill the rights of persons living with mental illness. It introduced a provision for advance directives by which an adult person could declare a decision about the kind of treatment that may be given in case of development of mental illness. A person with mental illness could also nominate a representative who can provide support in making treatment decisions. The Act also established a Mental Health Authority at the Centre and state levels responsible for registration of all mental health practitioners (clinical psychologists, mental health nurses, and psychiatric social workers) and for registration and quality maintenance of all mental health establishments while also providing training and policy inputs. The MHCA 2017, therefore, made provision of mental healthcare as justiciable rights, which implied that a person with mental health needs could assert the rights bestowed under the Act by appealing to the district level Mental Health Review Board seeking redressal or appropriate relief. According to the MHCA 2017 a person with mental illness have the following rights:

5.2.1 Right to Access Mental Health Services and Treatment The Act guarantees the right to access to mental health care and treatment without discrimination and in manner that is acceptable to the persons living with mental illness and their families and care givers. The Government will integrate mental health services into general healthcare services including primary, secondary, and tertiary health care and in all health programs run by the Government. The treatment

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will be provided to support persons with mental illness to live in the community with their families with a minimum period of hospitalization only as a last resort when appropriate and adequate community-based treatment has been shown to fail. The Act states that minimum mental health services run or funded by the Government shall be available in each district to ensure that the mental health services are accessible to all irrespective of their geographical locations. This entails that the person with mental illness does not need to travel long distances to access the services. Persons with mental illness living below poverty line shall be entitled to free mental health treatment and services at all government-run or funded mental health establishments.

5.2.2 Right to Community Every person living with mental illness shall have the right to be part of a community and have the right to family. A person cannot continue to remain in a mental health establishment merely because of being abandoned by the family or for being homeless. A person with mental illness who has been abandoned by the family has the right to free legal aid to facilitate exercising the right to family home and living in the family home. Less restrictive community-based establishments including half-way homes and group homes will be provided for persons recovering from mental illness who no longer require treatment in restrictive mental health establishments. 5.2.3

Right to Dignity and Nondiscrimination Between Mental and Physical Illness Every person living with mental illness shall have a right to live with dignity and be protected from cruel, inhuman, or degrading treatment in any mental health establishment including physical, verbal, emotional, and sexual abuse. The MHCA 2017 aims to reduce any gap between mental and physical health care by stating that all facilities that are extended for physical health care shall be made available without discrimination for people with mental illness. Moreover, this includes provision for medical insurance for treatment of mental illness on the same basis as is available for treatment of physical illness. 5.2.4 Right to Information The person with mental illness and the nominated representative has the right to information on the criteria for admission under the existing legal provision, right to appeal to the Mental Health Review Board for review of the admission, information on the nature of illness and proposed treatment plan including side effects. 5.2.5 Right to Confidentiality and Communication All treatment-related information is to remain confidential except for releasing it to the nominated representative, to other mental health and healthcare professionals and to protect any other person from harm or violence or prevent threat to life or upon judicial order. The person with mental illness shall have the right to communicate through phones and electronic mail and also have the right to refuse to communicate except when it is judicially ordered or required under the provisions of this Act. No

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photographs or any information related to the person with mental illness can be released to the media without the persons’ consent.

5.2.6 Right to Legal Services A person with mental illness is entitled to free legal services under the Legal Services Authorities Act 1987 same as all citizens of India. The person with mental illness also has the right to complain regarding deficiencies in provision of care, treatment, and services in a mental health establishment. The Act also decriminalizes suicide attempts and places the onus on the government to rehabilitate the person to ensure there is no recurrence.

5.3

Implications for Stigma Toward Mental Illness

Stigma and discrimination toward mental illness leads to isolation of the person struggling with mental illness. In spirit the MHCA seems to have noble intentions of empowering the person with mental illness by enshrining rights and making provisions for services and processes by which they have greater control over their treatment decisions. The provision of advance directive and nominated representatives, however, assume that a person with mental illness will be able to make such decisions and will have people willing to support and care for them. With substantial lack of adequate healthcare providers, financial burden of care, and lack of awareness within the population (Gururaj et al. 2015–2016), it is difficult to imagine how a person with mental illness or at risk of mental illness will be able to utilize the advance directive option (Mishra and Galhotra 2018). Given the research evidence that families are perpetrators of stigma and discrimination, such directives and nomination facilities can lead to further abuse and control. The MHCA also aims to close the gap between physical and mental healthcare facilities and increase access to mental health care. Ideally, if people with mental illness were able to easily access the medical attention they required, especially in community setups it would help improve their assimilation in society. According to the National Mental Health Survey (2015–2016), 130 million people needed mental health treatment across 12 states of India (Gururaj et al. 2015–2016) whereas mapping India’s existing mental health system indicated that it was grossly inadequate with only 9000 psychiatrists, 2000 psychiatric nurses, 1000 clinical psychologists, and 1000 psychiatric social workers (Garg et al. 2019). As per calculations, it will take 42 years to meet the requirement for psychiatrists, 74 years for psychiatric nurses, 76 years for the psychiatric social worker, and 76 years for clinical psychologists, for providing care for 1.3 billion population, provided the population (assuming both general population and mental health human resources) remains constant (Math et al. 2019). At present, under the District Mental Health Program (DMHP), health officers at district level were being trained in mental health to provide preliminary treatment for persons with mental illness. However, the MHCA 2017 allows only emergency treatment for 72 h by a physician before referral to a higher center, and there is no

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provision for follow-up treatment by a non-mental health professional (Singh 2018). Therefore, until a psychiatrist or clinical psychologist is available at district level, easy and timely access of mental health services for people with mental illness seems to be a distant dream. While the Act does provide a person with mental illness the right to access to mental health services and treatment but deficiencies in the current mental healthcare infrastructure indicates that it will be difficult to do so until the government funding is increased. As discussed in earlier sections, families often bear the brunt of mental illness stigma. The MHCA does talk about the right to family but is silent on support for caregivers within the family. It specifies that the period of hospitalization will be at the minimum and makes provisions for halfway homes. But with the current budgetary allocations of less than 1% toward mental health (Patel et al. 2016), the possibility of achieving such seamless infrastructure is very bleak. Psychoeducation and access to professional help is required to enable the family to develop empathy and skills to support a person with mental illness. Using legal force to bind a person with mental illness with the family will probably result in feelings of resentment and vengeance. Instead of simply stating that a person with mental illness can utilize free legal aid that caters to all the citizens of India, the MHCA could have inculcated known community-based models of care for people with mental illness. One such model is the three-tier model used by the Community for People with Schizophrenia in India (COPSI) which consists of an outpatient program, deployment of mental health workers for community care, and involvement of the family members and key people in the community in the form of local health groups has shown promising results (Chatterjee et al. 2014). The impact of MHCA in reducing stigma would have been more effective if it had drawn from such collaborative community-based care models that have been tested instead of being restricted to free legal aid and provision of half-way homes to enforce the right to family and community. The Act does decriminalize attempted suicide by person living with mental illness and makes provisions for rehabilitation of such a person. In spirit, this will serve to decriminalize attempted suicide but create issues of labeling it as a mental illness and thereby become a potential to cause further stigma. It is possible that dowry-related burning/attempted suicides and homicides could be presented as attempted suicide, placing the entire onus of the act on the victim without drawing necessary attention to the crime (Mishra and Galhotra 2018).

6

Conclusion and Future Directions

Like in many parts of the world, people living with mental illness in India continue to face social isolation and inequal opportunities in terms of employment, education, and overall quality of life. There is a great need to improve societal acceptance of people with mental illness, by enhancing mental health education to address fears and prejudices linked with mental illness and replacing negative constructions with empathy and skills for managing mental illness. Mental health education has shown effectiveness in mental illness stigma reduction (Skre et al. 2013). This kind of

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education need to be initiated in schools, wherein prejudices and negative stereotypes can be demystified at younger age, thereby shaping positive attitude toward people living with mental illness in our generations to come. Codesigning anti-stigma initiatives as well as community reintegration schemes in consultation with persons with lived experiences of mental illness and their families, placing greater emphasis on community partnerships, cultural ethos, faith healers, and youth groups is recommended. Evidence suggests that sharing one’s lived experiences of mental illness can be empowering and reduce self-stigma (Corrigan et al. 2013). Engaging persons with lived experiences of mental illness as peer support workers to support other individuals with mental illness can lead to positive outcomes such as challenging stigma through personal empowerment and providing hope, promoting mental healthcare seeking behaviors, and paving the path to recovery (Naslund et al. 2016). Further, recovery from mental illness is beyond just symptom remission. Evidence suggests that Recovery Colleges (RC) have the potential to reduce self-stigma as well as structural stigma (Whitley et al. 2019). Recovery colleges are a new initiative aimed at people with mental illness to support their recovery and address the inequalities that they face in terms of access to employment, higher education, and stigma (Whitley et al. 2019). RC as model of care exists in over 20 countries, including the USA, Canada, the UK, Hong Kong, Italy, Sri Lanka, Israel, Japan, and the Netherlands (Whitley et al. 2019). Such model of care where lived experiences of mental illness is valued will promote in stigma reduction. Recognizing the social and systemic barriers that isolate people with mental illness from participating in the society and institutionalize community models of treatment and care is also recommended. At the same time, it is crucial to recognize the family’s role in caregiving and related stress and stigma experienced by the family and develop support models to help the family manage mental illness as a unit rather than taking an individual focused approach. The MHCA of 2017 is definitely a progressive step in recognizing the rights of people living with mental illness in India. The act and its provisions need to be carefully and systematically reviewed to understand its impact on the lives of people living with mental illness and their families and to identify operational challenges and best practices that are culturally relevant and able to meet the intended goals of the act. Budgetary allocations are necessary to achieve the treatment and servicerelated goals of the Act along with public education and skill building. Without sufficient budgetary allocation, “mental health for all ” will remain a distant dream. Additionally, to be truly effective in reducing stigma toward mental illness the Act will need to be supported by progressive schemes for rehabilitation and care of people with mental illness taking into consideration the role played by family and community in such care. Finally, to improve Indian society’s acceptance of people with mental illness, the fears and prejudices linked with mental illness will need to be dismantled and replaced with empathy and skills to integrate. An effective step to address mental illness stigma would, therefore, need to be multilevel and multifaceted to be able to impact all the systems surrounding a person with mental illness. This would entail developing empathy and awareness while implementing policies that enable people with mental illness and their families to live a rightful life.

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Social Exclusion Among People with Mental Health Conditions in Indonesia

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The Case of Pasung Chika Yamada, Youdiil Ophinni, and Hervita Diatri

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Situation of Mental Health Problems in Indonesia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Historical Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Current Situation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Exclusion of PMHC in Indonesia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 The Global Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Physical Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Economic Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Educational Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Political Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Cultural Exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Observational Report on the Social Exclusion of Indonesian PMHC . . . . . . . . . . . . . . . . . . . . 5 Efforts to Promote Social Inclusivity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Grassroots Movement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Regional Anti pasung Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 National Government Efforts to Facilitate Inclusivity of PMHC . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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C. Yamada (*) Center for Southeast Asian Studies, Kyoto University, Kyoto, Japan e mail: [email protected] u.ac.jp Y. Ophinni Ragon Institute of MGH, MIT, and Harvard, Cambridge, MA, USA e mail: [email protected] H. Diatri Department of Psychiatry, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_56

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Abstract

This chapter puts into spotlight a troubling yet prevalent case of social exclusion targeted toward people with mental health conditions (PMHC) in Indonesia. One extreme example is pasung, an inhumane practice of physical restraint and confinement of PMHC, which is birthed from barriers in both personal and systemic level to seek mental health care. The chapter opens the discussion from the current situation of mental health conditions in Indonesia and moves toward the social exclusion of Indonesian PMHC. Multifaceted forms of exclusion are further explored. As the main analysis, a brief observational survey to PMHC respondents across the country is conducted and respective social indicators are analyzed, to shed light on the extent of social inclusion of PMHC. Finally, strategies supporting inclusivity currently being implemented in Indonesia are examined. It is hoped that the narrative and methodology presented in this chapter may invite policymakers and relevant stakeholders to prioritize inclusivity programs for PMHC in Indonesia, and most importantly, to galvanize and sustain efforts toward the eradication of pasung in all corners of the Indonesian archipelago. Keywords

Social exclusion · Mental health · Stigma · Indonesia · Pasung

1

Introduction

While substantial progress in evidence-based psychiatric interventions has been made since the start of the twenty-first century, a significant gap remains between the number of people with mental health conditions (PMHC) needing care and the actual number reaching services or completing therapy. This treatment gap is almost thrice as big in low- and middle-income countries (LMICs) (Kohn et al. 2004; White and Sashidharan 2014). In Indonesia, the mental health treatment gap varies between 91% for clinical depression and 46% for schizophrenia, an improvement compared to two decades ago, but still lagging relative to higher-income Asian countries (Ng 2018; Plianbangchang 2004). The main cause for the discontinuity between care seeking and access to treatment is lack of capacity in infrastructure and mental healthcare providers. Another one that is less obvious is stigma – an umbrella term used to describe ignorance, negative affections, prejudices, and discriminative behaviors, which impact the lives of PMHC. The unmet need of mental health care can be regarded as both the cause and consequence of exclusion of PMHC. The concept of social exclusion itself construed a structural exclusion of individuals in a much broader sense: economic, educational, political, and societal processes that lead to a systemic disadvantage. For example, poverty presents an increased risk of poor mental health, yet recurrently PMHCs are being excluded from the labor market and economic

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consumption (Burchardt et al. 2002a). Reduced participation in education and civil democracies is also widely recorded in multiple countries across the wealth spectrum (Evans-Lacko et al. 2014; Ford et al. 2018). Stigma also aggravates the barrier for PMHC to engage in care in personal level, due to its negative effect toward self-esteem, as well as community level, such as discriminatory attitude of their surroundings or even healthcare provider, which adds into the health care system inequity already signified by the lack of insurance coverage and legislative protection (Corrigan 2004; Corrigan et al. 2014). Ultimately, the dearth of social participation and subsequent deprivation of social capital, as coined by Putnam (1996), may very well signify the core disposition of social exclusion among PMHC (Morgan et al. 2007). Cardinal features can be identified in all of these facets: PMHC are being excluded relative to those without, by the surrounding populace or certain societal or governing agency, as a dynamic long-term process that may cross generations (Burchardt et al. 2002b). Well into the twenty-first century, people with long-term mental health problems are still among the most socially excluded groups, frequently existing in the apex of inequities (Boardman 2011; Morgan et al. 2007). The most severe form of social exclusion involves a physical restraint and confinement of PMHC, first documented also in France at the end of the eighteenth century (Weiner 1979). Indonesia still sees a prevalent occurrence of this practice, known as pasung – officially banned by the government in 1977, but still a common occurrence particularly in rural areas. Pasung often manifests as human rights abuses; extreme cases may exhibit shackling of limbs and confinement, lasting variably from days to several years, as directly observed by the author (HD) in 2006 in rural Sumatra (Minas and Diatri 2008). A government survey in 2018 estimated that almost 145,000 people with schizophrenia have experienced pasung at least once in their lifetime (Ministry of Health of Republic Indonesia 2019). In 2010, a government initiative labeled “Free from Pasung” was launched, aiming to improve social inclusivity of PMHC and eradicate pasung by 2015, which later extended to 2019. As will be discussed later in the chapter, however, initial implementation has been far from adequate. Social inclusion is not merely done by reversing social exclusion. An effective approach should incorporate a sense of acceptance, communal participation by PMHC, as well as removal of barriers encompassing multiple domains: economic, social, political, and cultural, in different hierarchies: individual, family, community, and country (Baumgartner and Burns 2014; Popay et al. 2008). This chapter discusses the multifaceted exclusion faced by PMHC in Indonesia (physical, economic, political, educational, and cultural), with particular emphasis on pasung and factors associated with it. The chapter will present a result of a brief survey on perception of exclusion among nationwide PMHC respondents. Lastly, the efforts being done in the past decade to promote inclusivity of PMHC in Indonesia will be reviewed, as well as possible future approaches to abolish pasung and foster long-term social inclusion of PMHC, in Indonesia or in similar LMIC settings elsewhere.

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2

Situation of Mental Health Problems in Indonesia

2.1

Historical Context

The indigenous perception toward mental illness in Indonesia has been generally characterized as patient and tolerant, with traditional healing and family caregiving being the primary supportive resource for PMHC (Kline 1963). From the 1880s to 1920s, the Dutch colonists established the first mental hospitals or asylums, which primarily provided custodial care by isolating people regarded as disturbance to the social order. Throughout the colonial period, mental health facilities were understaffed and overcrowded, and overflowing capacity prompted placement of PMHC in prisons (Pols 2006). Modern psychiatry was then introduced during the 1960s to 1980s in Indonesia, along with the establishment of psychiatric departments in national universities, as well as conceptional transition in which the Ministry of Health acknowledged three pillars of mental health care: prevention, treatment, and rehabilitation (Wahyuni et al. 2012). The economic crisis of the 1990s in Indonesia led to a period of decline for psychiatry, as most mental hospitals were underfunded. An ethnographic study conducted in the early 2000s reported that, in combination with pharmacotherapy such as antipsychotics and antidepressants, electroconvulsive therapy (ECT) was routinely used in psychiatric care. The choice of ECT was not based on its effectiveness based on the health conditions of PMHC nor their preference; it was rather chosen as it reduces symptoms quickly and patients could go home sooner to their family. This is in agreement with family caregivers who cannot afford the cost of hospitalization (Browne 2001). Although the introduction of the National Health Insurance scheme in 2014 (as discussed later) reduced financial burden for patients and their families, in some psychiatric services, the practice is still far from shared decision making – ECT without consent is still documented as recently as 2016 (Sharma 2016). Similar to other parts of the world, the segregation, punishment, and coercion enforced on PMHC in the name of treatment, mostly existing in the early history of psychiatry but in part still prevailing today in Indonesia, is one of the crucial origins of stigma attached to professional mental health care.

2.2

Current Situation

A large bulk of health data in Indonesia, including that of mental health, is retrieved from the Basic Health Research (Riskesdas) conducted by the Ministry of Health in every 5 years. The latest Riskesdas in 2018 reported that the national prevalence of severe psychotic disorders, including schizophrenia, was 0.18% or 481,860 people (Ministry of Health of Republic Indonesia 2019). Almost 85% of them had reached treatment at least once, but only 49% of that number underwent regular treatment. Most cited reason for treatment attrition was due to the patient feeling or looking better, and either the patient or the family deciding no further need for medication.

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As for mood/affective disorders (bipolar, depression, or anxiety), among people aged over 15, 6.1% of them were defined as having depression symptoms based on the Mini-International Neuropsychiatric Interview (MINI), and 9.8% were diagnosed with emotional mental disorders based on the Self Reporting Questionnaire 20-Item (SRQ-20) measurement. Proportion of people with emotional mental disorders who sought treatment was 26%, but only 12% of them underwent treatment in the last 2 weeks. Among people diagnosed with depression, merely 9% of them were properly treated. Overall, less than 10% of PMHC were treated in proper health facilities, highlighting either (1) the small number of PMHC who are motivated to seek appropriate treatment, or (2) the inaccessibility to healthcare services, or most likely, both. The referral system for mental health care in Indonesia, similar to other health conditions in general, is typically structured in the pyramid of care as shown in Fig. 1. In this system, patients are ideally enrolled firsthand into the frontmost, first tier of primary care: the government-run community health centers (Pusat Kesehatan Masyarakat, Puskesmas). Puskesmas holds the most integral role in community care across Indonesia – it essentially enacts the four lowest tiers in the pyramid. Complex or refractory psychiatric cases would then be referred to the general hospitals (secondary tier) and then to larger general hospitals with specialist care or mental hospitals (tertiary tier) if necessary. Puskesmas are located within 2 h from the residents of the majority of PMHC, indicating that they are relatively well disseminated (Idaiani and Riyadi 2018). A pronounced, long-standing problem contributing to the treatment gap is the absence of mental health service in the majority of Puskesmas, particularly outside Jakarta and Java island. Out of all ~1,700 Puskesmas in service nationwide, only a fifth actively provide mental health care. The proportion of mental

Fig. 1 The pyramid system of mental health care as laid out by the World Health Organization (Bhugra et al. 2017). The situation in Indonesia is annotated on the right. It should be noted that the structure of informal health services in Indonesia (traditional or religious healers; dukun, tabib) are not detailed in this figure

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health service in the corresponding tiers is depicted in the pyramid. Another pronounced problem is the extreme lack of formal professional mental health care providers. Professional workers in the mental healthcare sector in Indonesia include psychiatrists, doctors, nurses, psychologists, social workers, and occupational therapists. Based on the World Health Organization (WHO) Atlas Report in 2017, in a nation of 267 million people, only 773 psychiatrists are employed – 0.32 per 100,000 people – which is the second lowest in Southeast Asia (Ministry of Health of Republic Indonesia 2020). Almost 70% of all psychiatrists are based within Java, the most densely populated island, and 33% are based within the capital, Jakarta. Similarly, half of all hospitals providing psychiatric care are located within Java. Peripheral regions have to rely more on nonprofessional workers such as counsellors, volunteers (kader), and peer support. This poor decentralization of health facilities and manpower adds into the natural geographical difficulties of expanding health care reach across the Indonesian archipelago. Moreover, details regarding this health care stratification are not properly dissipated to the public, and many rural families encountered difficulties in following the referral procedures. Back referral into primary care is particularly integral in the management of chronic mental conditions, and although the process was outlined within the law (Minister of Health Law No. 28/2014), the implementation is severely lacking. The basic human and health rights of PMHC are protected within the Indonesian Constitution (Undang Undang Dasar, UUD) ever since the country’s independence in 1945. The first Health Law specifically relating to mental health was then passed by the Ministry of Health in 1966 (Law No. 3/1966), before being replaced in 1992 (Law No. 23/1992), which aims at equity and protection of rights of PMHC. Regulations on mental health in these, however, are brief and only broadly mentioned the necessary efforts to implement a mental health program. A considerable progress was made by the passing of Mental Health Act No. 18/2014, describing 91 Articles – compared to a mere 14 Articles in the 1966 Law – detailing preventative, curative, and rehabilitative efforts to bolster mental health care provision, including social empowerment in the family, community, and workplace settings. Implementation was impeded, however, by chronic problems pertaining to the treatment gap in Indonesia: lack of treatment providers, neglected government priorities, insufficient allocation – a mere 1% of total health care budget – to mental health care provision and infrastructure, and the lack of research to advocate evidence-based programs. Expansion of mental health services is still not prioritized by the government, for example, within the Strategic Plan of Indonesian Ministry of Health 2020–2024, even though management of psychiatric disorders was already included in the Minimum Standard of Care (Government Law No. 2/2018). This led to insufficiency of mental health services and adversely affected accessibility of care. Importantly, while the 2014 Act specifically mentions the importance of social inclusion of PMHC and sets definite parameters to achieve, such as the eradication of shackling, exclusion remains rampant and targets were left out of reach.

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Social Exclusion of PMHC in Indonesia

3.1

The Global Perspective

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The Italian movement of Democratic Psychiatry in the 1970s – together with the advent of antipsychotic medicine – has brought about the fundamental reform of psychiatric treatment as epitomized by health care deinstitutionalization, i.e., the replacement of state-run mental asylums with federally funded community services, such as halfway houses, outpatient clinics, and family care residences. This revolution was then followed globally over the next decades, reaching sporadically into LMICs, such as Brazil (Goulart and González Rey 2016). More recent multinational directives, such as the World Health Organization (WHO) 2013 Comprehensive Mental Health Action Plan, as well as the mental health agenda in the 2015 Sustainable Development Goals (SDGs), helped precipitate integration of formal mental health services into community-based settings in member states. Despite this, the integration of PMHC into the wider social environment may entrap them into another confinement in the form of exclusion, fueled by stigma and discrimination from their surroundings. Deinstitutionalization has been argued to contribute to social exclusion of PMHC, which in turn creates barriers for them to seek care, and ironically lead to the same outcome of physical isolation (e.g., prison and shackling) as well as other forms of exclusion (Wagenaar and Lewis 1989). Proponents of the argument cite the Penrose hypothesis in 1939, stating that the number of psychiatric beds is inversely associated with the size of prison populations, notably evident in the United States and in longitudinal studies in South America (Mundt et al. 2015). The inherent societal values of socioeconomic hierarchy, labor division, as well as distorted cultural beliefs on the origin of mental health disorders all factor into the segregation of PMHC. Regarded as a low-functioning group, PMHC are excluded from multiple facets of society, further leading them into lower socioeconomic class and marginalization. Without a proper form of social support or inclusivity program, this creates a negative spiral: poor economic independence hinders PMHC from gaining adequate mental health care, leading them into worsening disabilities, and a more severe form of exclusion. Community-based mental health care also made its way into East and Southeast Asia. Family involvement is the main characteristic in these regions, where on average 70% of patients with psychosis live with their families, even in a muchWesternized country like Singapore and South Korea (Ito et al. 2012). Similarly in Indonesia, the role of family is everything in the caregiving for PMHC, especially more so in the peripheral, nonurbanized area. However, the Western concept of deinstitutionalization is not readily applicable to the Indonesian context. Financial constraints in the family usually limit institutionalization – admission into institutions is seen as an economic privilege for the higher class. Poor infrastructure development also limits the number of these institutions, i.e., psychiatric beds as well as psychiatrists, which are harrowingly low in Indonesia (Fig. 2). Thus, the burden of caregiving for the family is disproportionately high.

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Fig. 2 Number of psychiatrist and psychiatric beds in selected East and Southeast Asian countries. (Data obtained from World Health Organization Mental Health Atlas, 2017 (World Health Organi zation 2019))

Comparing between developing and developed countries, there is an adage that the clinical outcomes of schizophrenia in the former are better, despite lacking health infrastructure and access – a phenomenon termed as the outcome paradox (Padma 2014). This stems from a series of studies by the WHO in the 1960s, comparing the conditions of people living with schizophrenia between high- and low-income countries, as judged by several metrics: duration of psychotic symptoms, remission, and social impairment. The paradox is seen most clearly in India, where almost half of people with schizophrenia had positive outcomes. This led to the notion that the socio-environmental and cultural milieu in developing countries – thought to be better inclusivity, facilitated by a less rigid lifestyle in rural areas, better support system, or perhaps less public stigma – influences psychiatric outcomes toward the better. However, the outcome metrics are clearly confounded by a set of other factors, for example, social indicators such as marriage rate among PMHC are higher in India, but arranged marriages are also common. More recent findings further highlighted such inconsistencies; a synthesis of studies in 11 LMICs by Patel et al. indicates higher outcome heterogeneity, concluding that the situation surrounding people with schizophrenia is far more complex, and the outcome paradox could not be generalized even in India, let alone to all developing countries (Cohen et al. 2008). Similarly in Indonesia, symptomatic remission of people with psychotic symptoms is comparable to those in developed countries, as shown in a 17-year cohort by Kurihara et al. in Bali (Kurihara et al. 2011a). Social functioning outcomes were slightly better, particularly employment rate, but these mostly constituted household workers rather than inclusion into the competitive labor market (Kurihara et al. 2011b). Most striking counterargument to the outcome paradox is the accumulating evidence of physical and social exclusions, venturing well into the realm of human

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rights abuses, as seen in several LMICs including Indonesia. In the following, the chapter will outline several forms of exclusion suffered by PMHC, both in general and in Indonesia specifically, the possible explanations behind the exclusion, and ways to improve inclusivity in each aspect.

3.2

Physical Exclusion

The practice of physical restraint could be traced back to the eighteenth century English vagrancy laws, which justified “unruly” people to be restrained on a quid pro quo basis by the public authorities (Masters 2015). Physical exclusion of PMHC remains evident through the 300 years of world history, from mental asylums in Massachusetts to religious shrines in Uttar Pradesh (Masters 2017), in the form of restraining either by rope, chains, cages, or other similarly confined spaces. Reforms to reduce physical restraining were slowly introduced by medical practitioners in mental health facilities – famously pioneered in 1794 by the French physician Philippe Pinel, who advocated for humane treatment of the people with mental illness as written in the Declaration of the Rights of Man, namely, liberty and equal treatment as others (Weiner 1992). Mental health patients were thus freed from the shackling walls of Asylum de Bicêtre, and this endeavor gradually propagated throughout Europe and the world, including Asia in the late twentieth century. In Bahasa Indonesia, pasung in the literal sense means “to punish.” To apply pasung, in this case, refers to the physical restraint or confinement of people deemed by others to be “criminals, crazy, or dangerously aggressive.” Act of pasung is punishable by the Indonesian Penal Code with imprisonment and fine for the perpetrator since 1977 (Saribu and Valentina Napitulu 2010), but it has not been actively implemented, and cases remained severely underreported until recently. A 2014 survey reported that at least 57,000 Indonesian PMHC have experienced pasung at least once in their life, and 18,800 people may currently live in pasung (Sharma 2016). Based on the 2018 Riskesdas, out of all households with family members suffering from psychosis across the country, lifetime practice of pasung was found in 14.3% or approximately 145,000 people, and almost a third of them still underwent pasung when the survey was conducted (Ministry of Health of Republic Indonesia 2019). One of the earliest scholarly evidence regarding pasung was the ethnographic study done by Broch in 2001, which probed the behavior of villagers toward a PMHC in Central Sulawesi (Broch 2001). The person in focus is a male diagnosed with psychotic disorder who frequently displayed erratic and violent behavior. He was jeered as well as feared by the villagers, who all believed him to be of weak faith and possessed by jin or spiritual entities, with no apparent improvement after visits to a psychiatric clinic and then to a traditional healer (dukun). Due to the escalating threat of violence to his neighbors, he was then confined to his house alone, restrained with a pinanga wood attached to the wall with heavy ropes. A detailed examination of pasung practice was done by the author (HD) in a 2008 study of 15 cases on Samosir Island, North Sumatra. Thirteen of them were

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Fig. 3 Practice of pasung in Samosir Island. Left: Iron shackles are tied to the limb of a confined victim. Right: Wooden stocks or noh are used to shackle both legs of the victim. (Photos reproduced from Minas and Diatri 2008) (Photographs by Hervita Diatri)

diagnosed with schizophrenia, with the duration of illness ranging from 3 to over 25 years. Indeed, psychotic disorder – schizophrenia as a prominent example – constitutes 90% of pasung cases. Pasung was inhumanely applied via chaining, tying with rope, restraining one limb in wooden stocks called noh (Fig. 3), or confining them in a small room with little human contact. The location was inside the family house, or at the basement under a traditional stage house, or under a tree outside at close proximity to the house. Pasung practiced either briefly but intermittently, or persisting for years or even decades, ranging from 2 to 21 years. Importantly, 9 of the 15 patients had previously received treatment, but this had been discontinued due to unaffordable cost of medication and long transport to medical facilities, hinting a lack of resources as the main reason. Pasung itself would then lessen the chance for the patient to receive medical treatment, as the families would be struck with fear of releasing the patient, citing “rebound of violence” or even “revenge” from the patient’s part. Detrimental health consequences were apparent. Many of PMHC subjected to pasung have been found to be malnourished and wasting physically due to poor nutrition and hygiene. Personal hygiene becomes a problem as chained patients lack proper access to a toilet, and they urinate, defecate, eat, and sleep in a radius of no more than one to two meters, not dissimilar to a prison. Shackling of limbs resulted in wounds – in some cases, the victims were no longer able to walk (Minas and Diatri 2008). Solitary confinement further brought negative psychological effects, selfharm, depression, and suicidal intent (Luigi et al. 2020). The most concerning is death occurrences directly due to pasung, happened as recently as February 2021 in East Nusa Tenggara (Goti 2021). In that case, the schizophrenic victim was shackled in the legs and denied basic human needs such as food and wound care for weeks. Troublingly, in that case, the instigators were family and neighbors who themselves were aware that such a condition would certainly end the life of the victim – evoking a sense of collective, premeditated murder. The actual national mortality rate directly caused by pasung is not known.

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Nevertheless, studies relating to pasung in Indonesia have substantially increased in the past decade. A 2011 study, by Puteh et al., explored the demographic and clinical characteristics of PMHC released in the Aceh province via the “Aceh Free Pasung” program (Puteh et al. 2011). Majority (53 out of 59 cases) of diagnosis was schizophrenia with mean duration of symptoms of 11.3 years, and pasung has been practiced from a few days to 20 years. In another study by Irwanto et al. in Flores island, among 102 people in pasung, 70% of them were diagnosed with schizophrenia, and 86% once had treatment at local health facilities yet ended up in pasung lasting from 1 month to 26 years (Irwanto et al. 2020). An excellent series of journalism by the Human Rights Watch in 2016 also gave detailed accounts from firsthand victims, documenting hundreds of cases from an urbanized borough in Jakarta to a rural commune in Western Sumatra (Sharma 2016). Almost universally in all reports, family or household members were cited as the main instigator of pasung, practiced either at home or nearby, or via admission into institutions such as traditional healing centers.

3.2.1 Factors Associated with Pasung It is of importance to understand the family dynamics leading to pasung. Family caregivers often mention that the intention was to protect the PMHC from harm – mostly bullying and violence from peers, or other consequences such as being lost outside or falling into accidents – as well as the people in the neighborhoods from the impulsive behaviors of PMHC. Importantly, they would not practice pasung if only they “had a better option,” which means that pasung was regarded as a pragmatic “last resort” as they were eventually unable to cope anymore with the economic burden and other demerits of giving care to their PMHC family members. At least 78% of PMHC in pasung have accessed mental health care in the past, but either it is economically unsustainable for the family, or they have lost confidence due to the lack of clinical improvement, or poor quality of the inpatient environment. Treatment dropout caused relapse of schizophrenic symptoms in 97% of patients subjected to pasung (Laila et al. 2019). In some cases, PMHC refused to be treated and some were restrained in their trip to health care centers (Hidayat et al. 2020). When health services were available, families were willing to unchain the person and accept offered treatments (Minas and Diatri 2008). Treatments need to be sustainable; however, families reported the confusion on what to do after returning from inpatient care, lacking knowledge on long-term rehabilitative care (Katuuk et al. 2019; Laila et al. 2018). Accessibility is another problem, as families are unable to access mental health services mostly located in provincial cities; in this case, poor decentralization adds another obstacle to the geographical barriers of Indonesian archipelago. The most deep-rooted problems are probably the low health literacy and distorted beliefs on mental health disorder. It is typical for rural families to consult faith leaders or dukun to seek care, instead of health professionals (Marthoenis et al. 2016). Several studies have been done to elucidate factors associated with pasung practice in Indonesia. In the 2008 study by the author (HD), one of the main reasons put forward by the families was the patient’s aggressiveness, i.e., the severity of

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psychotic symptoms, which should have been manageable with a proper antipsychotic treatment (Minas and Diatri 2008). Qualitative interviews by Fitrikasari in 2010 in Central Java further described family reasons: to protect patients from their own behavior, or them wandering outside, and troublingly, to avoid feeling embarrassed or being scorned by the neighbors. All subjects were of low-economic strata (Fitrikasari 2010). Subsequent analysis into Basic Health Research in 2013 by Idaiani and Raflizar, which included 1,655 households having at least one family member with severe mental disorder, concluded household economic status as the most dominant factor, followed by low health literacy and rural residence (Idaiani and Raflizar 2015). Laila et al. conducted case-control studies involving 114 patients with schizophrenia in the Bogor regency of West Java in 2017, which identified presence of aggressive or violent behavior, unemployment, and negative family attitude toward the patient as predominant factors (Laila et al. 2019). Hartini et al. reported that a higher level of public stigma toward PMHC was associated with a supportive attitude toward pasung, and better mental health literacy is the most predictive of lower stigma (Hartini et al. 2018). However, daily contact with PMHC was also associated with lower stigma, which is counterintuitive to the occurrence of pasung among families of PMHC itself. It may be implied that while public stigma is inherently linked with exclusion, it is not regarded as the only factor leading to pasung practice. Importantly, several studies indicated that the stigma level toward PMHC may be comparatively lower in Indonesia. It is estimated that 35% of Indonesians were in daily contact with PMHC. From a comparative survey among 21 countries, Indonesia had the fourth smallest proportion of people who agreed that PMHC are more violent, and the fourth largest proportion of people agreeing that PMHC can overcome their illness (Seeman et al. 2016). Interestingly, Indonesian had a more optimistic perspective of possibility of recovery and social adjustment of people with schizophrenia, compared to the public sentiment in Japan (Kurihara et al. 2000). Therefore, the presence of stigma may not solely explain the prevalence of pasung in Indonesia – instead, socioeconomic disadvantage, lack of access to healthcare, i.e., the treatment gap and the lack of social outreach from respective formal health services to the community and family setting may be the more direct underlying problems. Pasung itself would then further aggravate the problem of reaching health care for PMHC, creating a vicious cycle. To summarize, Hidayat et al. synthesized factors associated with pasung from 32 published studies in Indonesia, into four social levels as depicted in Table 1 (Hidayat et al. 2020). Physical confinement of PMHC is certainly not an isolated incident in Indonesia – evidence of shackling was found across at least 60 countries worldwide, and it is merited to compare to the situation in other Asian countries. Practice of shackling is widespread in Asia, including but not limited to India, China, Cambodia, Oman, Yemen, Palestine, and Japan. The latter is one unique example: Japan has the highest number of psychiatric services per capita in Asia, but the practice of home custody of PMHC (known as shitaku kanchi) still persists in the postwar era and was identified even as recently as 2018 (Hashimoto 2019). An important distinction

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Table 1 Risk factors associated with pasung practice Socio ecological level Individual

Family

Community

Policy

Risk factors Male Younger age Not married Severe mental disorder Schizophrenia spectrum Aggressive behavior, particularly verbal aggression History of violence Treatment dropout Parent or elder sibling as instigator of pasung Low income Poor involvement in treatmentLow mental health literacy Distorted beliefs about mental illness Low mental health literacy Low economic strataHealth care inaccessibility Rural area Lack of policy implementation Lack of budget support for deinstitutionalization Poor quality of community based programs Poor coordination among relevant stakeholders

lies in high-income countries (HICs) versus LMICs, however, where coercion practices mostly exist within institutions instead of families. The average hospital length of stay for mental disorders is exceedingly high in Japan – 340 days, or 10–20 times longer compared to most Western countries, as well as Indonesia (21–42 days). In Japan, physical restraining was reported in 67% of cases, with almost half of them for over 48 hours (National Federation of Associations of Families with The Mental Illness in Japan 2018). The deinstitutionalization model is lagging in Japan relative to other HICs, as there is a lack of community welfare and health services to help PMHC in their homes, causing families to prefer admission into hospitals, which in turn provide incentives to the privatized health sector. This fact highlights the problem of relying on institutions to provide residential health care for PMHC. In Indonesia, taking into account the rate of infrastructure development and psychiatric education, it would take over a century to catch up to the number of mental health services in Japan, and yet, that may not be the optimal way to resolve the problem of exclusion. Community outreach to families, and deinstitutionalization targeted toward social integration of PMHC, backed by government policy to protect basic human and health rights, all take precedence relative to institutional care.

3.3

Economic Exclusion

Material deprivation and poverty have been acknowledged to be the stem of social exclusion. In 1979, Townsend expanded the definition of poverty to when “resources are so seriously below those commanded by the average individual or

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family that they are, in effect, excluded from the ordinary living patterns, customs and activities” (Townsend 1979). Thus, poverty is tightly linked to economic exclusion, where there exists a denial of access to labor markets, credits, or many other forms of capital assets. Simultaneously, a substantial body of evidence has linked income inequality with a higher prevalence of mental disorders, including psychosis, universally in both HICs and LMICs (Patel et al. 2018; Pickett and Wilkinson 2015). As an evidence in Indonesia, depressive symptoms as measured by CES-D were associated with poverty, as measured by per capita household expenditure between those above and under the poverty line (Tampubolon and Hanandita 2014). In this case, poverty may be the consequence of mental disorders. For example, PMHC may exhibit limited work functionality and thus reduce their earning capacity. On the other hand, poor mental health may arise out of poverty, stemming from the stress of living on a poor budget and housing, or the responsibility of providing for one’s own family. Thus, poverty is seen as the persisting factor contributing to poor mental health (Weich and Lewis 1998). Low perception of one’s own socioeconomic status – the so-called status anxiety – was also associated with a greater mental health burden (Demakakos et al. 2018). Economic power of PMHC may be seen from individual income (i.e., employment) or household income (e.g., family status, housing). PMHC is commonly excluded from employment and the labor market, sometimes unfairly. Almost all employment processes in Indonesia, in both government civic or private companies, require a physician-certified letter of health approval (surat keterangan sehat); this mere process blocks PMHC from recruitment without any regard to their functionality or work capabilities. This forces PMHC to surrender their financial independence and instead rely on family income, which in turn heightens the risk of mistreatment. Studies into pasung practice within families in Indonesia revealed a unanimous finding: Substantial economic strain is put into place toward families or support systems, leading to the exclusion of PMHC. In Central Java, most families resorted to pasung due to the high cost of medications (Suharto 2014). The incurable nature of psychiatric diseases and the need for sustainable treatment mean long-term cost incurred for medications, especially in refractory schizophrenia. The requirement for families to provide care at home also limits their own work opportunity and further exacerbated the economic burden. Low overall economic power in the community also factors as an environmental pressure; about 80% of people subjected to pasung lived in low socioeconomic and remote areas (Hidayat et al. 2020). However, findings were heterogeneous; a study in West Java showed that families still practice pasung, despite more than two-thirds being included in the National Health Insurance coverage (Laila et al. 2019). It is of importance to discuss the Indonesian insurance policy in regard to mental health conditions, as this is a common form of economic exclusion related to health services. Since 2014, all Indonesians are covered in the universal National Health Insurance (Jaminan Kesehatan Nasional, JKN) organized by the Social Insurance Administration Organization (Badan Penyelenggara Jaminan Sosial, BPJS). JKN

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goes hand in hand with the already established insurance for the economically poor, termed social health insurance (Jaminan Kesehatan Masyarakat, Jamkesmas), to cover all Indonesians. On paper, the insurance includes hospitalization with proper indication, as well as all psychopharmaceuticals listed in the national essential list of medicines: antipsychotics, antidepressants, anxiolytics, obsessive-compulsive treatments, and opioid substitution therapy or methadone. Additionally, the Ministry of Health Law No. 52/2016 also outlined a payment scheme for second-generation atypical antipsychotics and psychotherapy. Insurance payments are provided in capitation, on a diagnosis or case-by-case basis. JKN was regarded as a success and grew rapidly to become the largest single-payer scheme in the world; a 2019 review reported population coverage of 203 million people (76%) (Agustina et al. 2019). Problem still lies, however, in the implementation of the care referral system, particularly in the chronic case of mental disorders. JKN also outlined the procedure of back-referrals into the primary care (Ministry of Health Law No. 28/2014), but this proves to be suboptimal; necessary psychiatric medications are often not available in Puskesmas, and any appropriate long-term rehabilitative programs for PMHC are nonexistent (Idaiani and Riyadi 2018). Home care visits are essentials, but peripheral Puskesmas are generally understaffed and thus have to rely on volunteers (kader). The infrastructure gap, as well as the physical distance between primary and the above tiers, is also significant in rural areas, which again highlights the inaccessibility of care, even though PMHC themselves may already have enrolled into the JKN. Other uninsured expenditures include administrative fees, transportation fees, inpatient necessities such as food and sanitary, and other indirect fees due to hospitalization such as children daycare fees and loss of income. Importantly, JKN also ruled out coverage for cases of illicit drug use as well as suicide attempts (Prastyani 2019). Consistent financial backing from the government for health infrastructure and JKN coverage is crucial. Compared to other SEA countries, Indonesia has a relatively low-budget priority on health issue – 2.36% of gross domestic product (GDP) – and only 2.89% of all health expenditure is allocated into mental health (Idaiani and Riyadi 2018). Out of this, almost 90% of funding went to psychiatric hospitals, while focus should be placed onto community-based prevention and early intervention (Maramis et al. 2011). Another important issue is the prevalence of mental health disorders among the homeless, particularly in urbanized areas in Java and Sumatra. The problem is frequently overlooked by mental health empowerment policies that otherwise focus on household settings within rural areas. In 2015, the Ministry of Social Welfare reported at least 50,000 people are homeless nationwide and estimated as high as half of them suffered from some kind of mental condition (Ministry of Social Welfare of Republic Indonesia 2017). Healthcare should be insured via Jamkesmas but this depends on their registration in the citizen registry, as well as their awareness to seek care – sustainable health outreach programs for the homeless, analogous to home visits by healthcare workers, are absent.

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Educational Exclusion

The process surrounding educational exclusion is multifactorial and complex, going far beyond institutional access. One often overlooked element, however, is mental health. An 18-years review in England by Cole showed that 3.58% of the school population were excluded in relation to mental health difficulties. Ford et al. described a bidirectional association between psychological distress and exclusion, which is more common among those living in socioeconomically deprived situations, children with poor general health, learning disabilities, as well as poor parental mental health (Ford et al. 2018). A more recent study in England also reported association between educational exclusion and psychopathologies among children and adolescents aged 8–16 years (Tejerina-Arreal et al. 2020). Relevant data in Indonesia are mostly extracted from social studies conducted among children with intellectual disabilities. Deinstitutionalization in terms of educational processes was initially regarded as unlikely to happen in the Indonesian contemporary culture, as there is a considerable stigma from the community, and special schools (sekolah luar biasa, SLB) were regarded as an appropriate place for disabled children to grow and be protected. However, institutions in turn bring further negative stereotypes, and families may see SLB as a place to hide or, worse, abandon their intellectually disabled kin – people who were institutionalized might end up spending most of their life in the SLB dormitory, without ever being visited by the family (Komardjaja 2005). Public misconception also exists, where SLB is thought to admit people with mental disorders, thus combining one prejudice with another. Risk of exclusion may also apply to older PMHC, i.e., in higher education and vocational training. Similar to the labor market, universities and vocational schools also require complete health approval from physicians – enrolment requires not only an absence in history of drug use, but also diagnosis of mental disorders. This signals a need for a systemic change.

3.5

Political Exclusion

Political exclusion manifests in the denial of citizenship rights, such as participation in a political process and the right to unionize, as well as security, such as having personal protection under the law. Bhalla described one notion of political exclusion as the absence of a neutral and altruistic state, where there may be disproportionately more representatives from the society’s dominant classes, which subsequently rules in discrimination against the minority groups (Bhalla and Lapeyre 1997). The Indonesian UUD stated that “all citizens have the same position in law and government, and are entitled to influence the law and the government without any exception.” However, such principle of equal opportunity at times was not put into action within the political process – one prominent example being the democratic election. The Act No. 42/2008 stated that people may only vote if they are included in the List of Permanent Voters, which may inadvertently create loopholes. In the

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2019 General Election of Indonesia, for example, the province of Riau announced that severe mental health patients could not be included into the list of voters, and the Commission for General Election also explicitly stated that people with severe mental health are excluded from the list (Warsito 2019). For people with nonsevere symptoms, families of PMHC still need to register them to the family registration, where some may refrain from doing so. The notion that PMHC should be able to vote is a controversy in and of itself in some societies, particularly conservative ones. In other places such as Makassar, incompetence caused failure of voting booth coverage into mental hospitals – hundreds of inpatients lost their voting privileges (Asih 2019). Further, clearance from a physician was needed for PMHC to vote, yet it was unclear what constitutes a medical reason for mental inability to cast a vote, and of course, families lacking access to a mental healthcare were excluded from the start. Failure of inclusion of PMHC into the national registry database, similar to what was seen in the list of voters, is an important yet neglected cause of healthcare inaccessibility. This is a common occurrence especially for those in pasung; they cannot receive a citizenship card or be listed in the family registration, which are needed for insurance coverage. This indicates a need for an integrated, cross-sector database system between the health, social welfare, and internal affairs sector. Nevertheless, notable representations of PMHC in Indonesia exist in the form of nongovernmental organizations (NGOs) or foundations, several of which are listed in Table 2. It is of benefit to build a synergistic collaboration between these consumer Table 2 Nongovernmental organizations working in the field of mental health in Indonesia Focus of work Pasung Schizophrenia Depression and suicidal thoughts

Bipolar disorder Mental health of mothers General mental health

Substance use disorder

Organization name Komunitas Sehat Jiwa (KSJ) Cianjur Komunitas Peduli Skizofrenia Indonesia (KPSI) Get Happy Into The Light ISmile4You Depression Warriors Indonesia Bipolar Care Indonesia Mother Hope Indonesia Perhimpunan Jiwa Sehat Yayasan Sehat Mental Indonesia (YSMI) Halo Jiwa Indonesia Inti Mata Jiwa (IMAJI) Yayasan Karisma Kapeta Foundation Rumah Cemara Yayasan Pemulihan Natura Indonesia (ULTRA)

Homepage istanaksj.or.id skizofrenia.org get happy.org intothelightid.wordpress.com campaign.com/ISmile4You meetup.com/jakarta depression support group bipolarcareindonesia.org motherhopeindonesia.com pjs imha.or.id sehatmental.id halojiwa.id imaji.or.id karisma.or.id kapeta.org rumahcemara.or.id ultraaddictioncenter.com

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organizations and professional health care workers, for example, NGOs working in the issue of substance use disorder regularly refer patients and supply the services of their own counsellors to Puskesmas. Independently, they also regularly conduct awareness education for the public via community events and social media. The main challenge lies in the funding, and thus, sustainability of such programs, as many of them are non-profit-based with limited commercial sponsorships. Government support would help a long way to sustain their activities.

3.6

Cultural Exclusion

Culture – shared patterns of behaviors and interactions, cognitive constructs and understanding – defines what is “normal” and acceptable in almost all societies. Inclusion and exclusion of an individual itself is fundamentally a cultural phenomenon in many ways in Indonesia, as in any other context. Culture distinguishes deviance from normative behaviors. For example, Javanese culture values self-control and containment, mental stability under strain, and nonexpression of negative emotional states. Behaviors which do not concord with these expectations are considered as extremely problematic, and thus devalued, even if they can be normative in another cultural context. For example, lack of ambition and shifting work interests, or lack of loyalty to a romantic partner, are regarded as deviant in several traditional Indonesian cultures but not so in a more heterogeneous society (Lemelson and Tucker 2017b). Conversely, there are some cases where signs of psychopathology in the lens of Western medicine, such as delusion or visual and auditory hallucinations, are somehow accepted in certain Indonesian cultures (Salan et al. 1992). For example, otherworldly possession and interaction with spirits are well accepted and normalized in certain regions – encounters with a spiritual figure wong samar are believed to be a blessing in Bali. Similarly, religion also plays an important role in etiological notions about a mental health condition, which shapes the social response toward PMHC. Islam is the largest religion in Indonesia, comprising 86.7% of the population, and Indonesia itself is the largest Muslim majority country in the world. In the Islamic society, fatalism is strongly believed, and mental disorders are viewed as similar to diseases in general; it is a test from God to improve their faith. This view is similar to an extent with other monotheistic religions in the country, e.g., Catholicism and Protestantism. In these contexts, prolonged chronic mental conditions are sometimes seen as a lack of faith, regular prayer, and patience to overcome the test given by God. This tends to put the blame on PMHC, and families may force them to undergo religious therapies to improve their faith; failed treatment may instead bring further blame on them, and worse, disapproval to their religious identity (Thee 2019). Ethnomedicine also has a crucial influence on reaction toward mental health conditions. Traditional healers (dukun, ahli hikmah) and religious clergies are usually the first contact of PMHC to treatment, especially in rural areas. In the pyramid of care (Fig. 1), the informal sector of health care mostly consisted of traditional or spiritual healing approaches provided in private practices, religious

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schools (pesantren), or rehabilitation centers. Examples of treatment practices in these settings include medication using concoctions of herbs, recitation in the person’s ear, vigorous massages, skin scraping with coin or ladle (kerokan), and baths, including onto children. Some families actually believe these practices as healing, but when the “treatment” does not alleviate symptoms, PMHC can suffer from social devaluation and invite further blame to themselves for their persistent deviant behaviors, which aggravates their psychological suffering. It is often difficult to reconcile ethnomedical practice with biomedical care. In some cases, traditional medicine is regarded as a hindrance for PMHC to seek medical treatment; for example, dukun often advises patients to disregard psychiatric medicine and to not take anything given by a doctor, leading to poor medication adherence. Ethnographic studies also showed that cultural values embedded into the social structure form “what matters most” for PMHC (Yang et al. 2014). For instance, unmarried female PMHC in Bali suffer socially, due to the vulnerabilities of their structural position within families and broader social networks. Marriage is highly valued in the Balinese culture as it provides extended kin networks of support, economic stability, and most importantly, children. Having children is a prerequisite for adulthood in Hindu beliefs, and PMHC themselves internalize these values and long for having a partner. However, it is not easy for female PMHC to find a partner in Balinese patrilineal society, where men have more entitlement than women in determining their own marital fate. Female PMHC, as a result, can be perceived as unmarriable and thus a burden to the family, causing substantial stress and exacerbating mental health conditions (Lemelson and Tucker 2017b).

4

Observational Report on the Social Exclusion of Indonesian PMHC

To shed light on “what matters most” for PMHC, and how they perceive their own inclusivity within the multiple facets of their daily life, a brief observational study recruiting 70 PMHC across Indonesia was conducted (Table 3). The instrument contained 43 questions with 5-point Likert scale answers, from “never” to “always,” and the questions could be grouped into nine domains as well as one “overall” inclusivity domain. Data collection was done for 3 weeks in December 2020. Result of the survey is presented in Fig. 4. Respondents in general possess a low perception of exclusion in terms of “communication and social networking,” “health and life satisfaction,” “social equality,” and “legal security,” with several exceptions of questions 24 (living environment) and 42 (legal security), both of which might relate more to financial limitation, and 35 (social equality) relating to gender discrimination, which still strongly permeates through the mostly patriarchal society. However, there is a concern of high perception of exclusion in regard to “employment and education,” “political engagement,” and “cultural participation.” Responses for the former were highly polarized, as the respondents were roughly divided in half in terms of their employment status.

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Table 3 Participant characteristics

Gender Highest education Employment status Living place

Primary diagnosis

Male Female University High school or lower Employed Not employed Java Sumatra Sulawesi Kalimantan Bipolar disorder Schizophrenia spectrum Major depression Anxiety disorder Borderline personality disorder

(N n 25 45 36 34 34 36 60 5 3 2 39 18 7 3 3

70) % 35.7 64.3 51.4 48.6 48.6 51.4 85.7 7.1 4.3 2.9 55.7 25.7 10.0 4.3 4.3

A bivariate analysis of demographics is conducted to shed light on factors associated with perception of exclusion (Table 4): • Gender. Males tend to believe in social support works of NGO. Females tend to report experiencing discrimination due to ethnicity, and feeling vulnerability to experience physical or sexual violence. • Education. University graduates tend to have a good perception of life around them, and participate and enjoy sports activities. • Employment. Employed PMHC tend to participate in various social activities, feel free to communicate with family or friends, feel appreciated as an able and independent person, feel listened to by surroundings, and feel free to decide where to live. • Living place. PMHC living in Java tend to have people to depend on for social support and report experiencing discrimination due to disability. • Diagnosis. PMHC with schizophrenia tend to believe in social support works of NGO and feel satisfied with work and current living conditions. The earlier hinted at the triumph of organizations representing people with schizophrenia, such as KPSI (Table 2). The latter indicate that people with mood, anxiety, and personality disorder might actually present higher risk to perceive economic exclusion and lower quality of life – they may feel considerably higher stress due to their underlying mental state. The above analysis showed how employment status was associated widely with multiple facets of social exclusion. This translates to the importance of economic and job empowerment of PMHC, to promote their independence to function properly in a social construct, and to improve their overall perception of inclusivity. Nevertheless, this analysis was done in a limited number of respondents, and results have to be

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Fig. 4 Respondents’ answers to 43 questions relating to the perception of exclusion. While a 5 point Likert scale (“never,” “rarely,” “sometimes,” “often,” and “always”) was listed as answers, the result here is directionally arranged into either feeling “excluded” (depicted in red) or “included” (blue). Questions are categorized into nine domains and one overall domain. Questions labeled “(R)” signifies reversed directionality

interpreted with caution before being replaced with that from a larger scale study. A wider recruitment is preferred, including to people with substance use disorder – a uniquely stigmatized subgroup within PMHC.

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Table 4 Association between characteristics and social exclusion among people with mental health conditions

Gender Highest education Employment status Living place Diagnosis

Male (versus female) University (versus high school or lower) Employed (versus not employed) Java (versus outside of Java) Schizophrenia (versus other diagnosis)

Positive association 16 27, 33

Negative association 37, 41

1, 3, 8, 13, 14, 24 9, 38 4, 16, 25

Question numbers of the social inclusion indicator which showed a significant association by Wilcoxon signed rank tests ( p < 0.05)

5

Efforts to Promote Social Inclusivity

5.1

Grassroots Movement

Within the conventional scope of psychiatric management, there is an emphasis on overcoming the specific experiences of mental illnesses, i.e., psychopathology and the apparent symptoms. However, person-centered ethnographies toward PMHC have otherwise taught a key lesson in that, ultimately, the most significant issues in their lives are not necessarily the psychoanalytic or psychotherapeutic concerns – both primary domains of contemporary psychiatry – nor the distress from the actual mental symptoms. It is rather the more fundamental aspects of the lives of PMHC, namely, bonds with family and peers, love and respect from others, supportive partnerships, and a sense of self-worth and meaning. Such inference can be drawn, for example, from a seminal series of ethnographic works by Lemelson which painted a picture on the lives and tribulations of Indonesians with diverse mental conditions over the period of two decades (Lemelson and Tucker 2017a). A 2015 visual documentary by Colucci in Central Java, “Breaking the Chain,” also illustrated the importance of love and support from families toward a better prognosis after release from pasung (Colucci 2016). An embodiment of these values is well-established in Java in a tradition called “rukun,” where harmonious integration with family and community critically helps the process of recovery of PMHC. Javanese people with schizophrenia expressed their recovery in terms of a movement through physical space, from confinement in their own home to the wider spaces shared with family and community. Indeed, PMHC in Java reportedly faced less discrimination when returning to work and the society in general, despite still having episodes of illness (Subandi 2015). Obstacles mainly exist in rural areas, again, due to lack of healthcare access and families having poor knowledge regarding mental health. Altering etiological belief itself is exceedingly difficult, and thus, the priority is to change the help-seeking behavior of

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the families. Here, the role of people with lived experience, mostly representatives from mental health NGOs, is of paramount importance – convincing the family and challenging their preexisting beliefs on mental illness, and mediating release from pasung. It is also important to present evidence or testimony from people with lived experience of mental conditions and pasung, conveying that recovery and reintroduction into society are possible via appropriate medical healthcare. Indeed, civic engagement has been increasingly recognized to promote social inclusion of PMHC, in which mental health NGOs play a significant role (Brooks et al. 2018; Irmansyah et al. 2020). Civic engagement encompasses a wide range of activities including shared decision-making, service user movements to influence policy and change health services, service user-led research, and patient and public involvement in the design and delivery of mental health care. Fortunately, establishment of organizations advocating for PMHC and their families has been ramped up in the past two decades in Indonesia (Table 2). Most of these were originally founded by a few PMHC as a small-scale mutual aid group to share information and provide emotional support to better overcome dire situations. Nowadays, they have grown in scale to cover nationwide, and play critical roles in increasing general awareness of mental health issues, providing assistance to PMHC and their families which covers a wide range of life domains, and advocating for improvements in the mental health care system and policy (Susanti et al. 2020). The main issue remains, however, in that the involvement of PMHC in formal services remains limited and superficial, owing to the (1) lack of relevant ability among health professionals – some of them displayed negligence of their role in civic engagement, or fear of potentially increased workload. Within treatment, some healthcare workers also exhibited paternalistic communication toward PMHC, or overly focused on pharmacotherapy. Lack of PMHC involvement in health service is also caused by (2) perceived incapability among PMHC themselves to make decisions regarding their own health, e.g., due to internalized stigma, and (3) organizational barriers, e.g., poor coordination between services, complicated bureaucracy, and financial unsustainability of mental health NGOs (Susanti et al. 2020). Determined efforts from these NGOs to counteract pasung may be sporadic and not fully sustainable, as these are nonprofit bodies that depend on donations and inconsistent government support. These highlight the importance of training for healthcare professionals on civic engagement, reduction of self-stigma among PMHC, and external support to sustain grassroots activities.

5.2

Regional Anti-pasung Programs

Initiatives were taken by several district governments in Indonesia in the past decade to counteract pasung, starting from the Free Pasung program in Aceh province. Supported by the heightened awareness of mental health and rapid expansion of mental healthcare infrastructure following the 2001 tsunami disaster, Aceh has consistently become a leader in implementing exemplary community mental healthcare programs within its region. In 2009, the district government postulated

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the plan to “remove the chains from the mentally ill” within Aceh. An exclusive ward was then built in the largest psychiatric hospital in the province, and trained healthcare workers (the Free Pasung team) were assigned to regencies to actively find and release victims – estimated to be at least 200 cases at that time. The “Aceh Free Pasung” program was formally declared the next year, and the governor himself removed shackles from a 45-year old man in pasung for 15 years, with media publicity (Azhari 2010). Liberated PMHC were brought to the inpatient ward in the capital Banda Aceh for treatment, before being referred back to Puskesmas for sustainable care, and finally to the families and community with careful observation. The program was a success – in the same year, 93 PMHC previously in pasung were freed and connected to treatment (Puteh et al. 2011). The initiative was sustained throughout the following year. In 2017, the governor was reelected and again sought to galvanize the Free Pasung program, targeted until 2022 (Juanda 2017). A similarly important change in Aceh in 2010 is the successful launch of a singlepayer health insurance system called the Aceh Health Insurance (Jaminan Kesehatan Aceh, JKA), well before the national implementation of JKN in 2014. Covering together with the national insurance for the poor Jamkesmas, JKA facilitates a full cost coverage of medical treatment for all inhabitants in the province without exception – none of the PMHC hospitalized in the initiation year of the Free Pasung program had any out-of-pocket expenditure. Transportation cost, however, was not covered by both JKA and Jamkesmas, thus creating the only economical barrier especially for distant rural inhabitants. The district government in Central Java then announced an official anti-pasung Act in 2012 – the first of its kind in Indonesia – in response to the high number of cases within the district (second highest after Aceh at the time) as well as increased public awareness regarding pasung and rights violation of PMHC. Grassroots activities by the first NGO who delved into the issue of pasung, Komunitas Sehat Jiwa (KSJ, based in Cianjur, Central Java), also played a major role for this achievement. The Governor Act No. 1/2012 also incorporated the process for rehabilitation after hospital discharge, asking for collaborations from NGOs as well as traditional rehabilitation centers to accompany their return to families. Members of KSJ even go as far as conducting daily home visits to out-of-reach houses, to directly hand antipsychotic medicine and insurance cards to the families (Colucci 2016). In 2013, the district government in East Java followed suit with the “Jatim Free Pasung” program, putting emphasis on strengthening three points: regional policy, human resources, and provision of health services. The plan was practically conducted in the same vein as in Aceh, where healthcare and social workers conduct home visits to liberate and connect PMHC to treatment. An intersectoral collaboration across three levels – province, regency, and village – also laid out to support the program, combining healthcare service (mental and public hospitals, Puskesmas, and kader) and policy coordinators in both health and social welfare sectors (from provincial bureau officers to village leaders). Program outreach has been successful, reducing almost 60% of the number of PMHC in pasung in one district in East Java in 2017 (Njoto et al. 2018). At the same time, an electronic reporting system termed e Pasung was introduced, increasing detection of cases in the province.

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Similar initiatives were then disseminated to provinces in Java and Sumatra, such as in Yogyakarta and Jambi. As of writing, 20 out of 34 provinces in Indonesia have a functional anti-pasung program, the latest of which was started in South Sulawesi in 2019. Nevertheless, the programs still mostly depend on financial resources backed by the governing bodies, and it is imperative for the provincial government to maintain them as priority.

5.3

National Government Efforts to Facilitate Inclusivity of PMHC

The bulk of regulatory roles in terms of mental health care provision in Indonesia is acted by both the Ministry of Health and the Ministry of Social Welfare. In 2010, both ministries announced the national movement of “Toward a Pasung-Free Indonesia” (“Menuju Indonesia Bebas Pasung”) (Stratford et al. 2014). Indonesia also adopted the Convention on the Rights of Persons with Disabilities (CRPD) in 2011, which includes PMHC as the subject, as an effort to guarantee their liberty and security from any kind of mistreatment. There was considerable interest to realize this movement from the government body accountable for human rights protection: the National Commission of Human Rights (Komisi Nasional Hak Asasi Manusia, Komnas HAM). In accordance to the Law No. 8/2016 on Persons with Disabilities, Komnas HAM is responsible for serving legal protections for PMHC, protecting them from any case of human rights violations (Clair 2020). The initial implementation of Indonesia Free Pasung, however, was impeded due to poor dissemination – a chronic problem of centralization, where central policies are not translated properly onto the peripheries, even when plans of decentralization itself have been described in the law (Act No. 12/2008). Paradoxically, practices of pasung are found predominantly in the rural areas, which again highlights the importance of district government to take the initiatives and galvanize the implementation in each province, as discussed above. Overall, improvements were localized and sporadic, and in the national scale, the first phase of the anti-pasung movement was considered a failure. The program was then extended under the Joko Widodo administration in 2015, aiming for 2019. More feasible indicators were embedded, including the number of pasung prevention activity toward people with severe mental health issues. While the target of complete eradication was again missed, there were considerable improvements through new national policies aiming to eradicate pasung and facilitating inclusion of PMHC. The Mental Health Law enacted in 2014 by the new administration was a landmark of mental health policy history in Indonesia, which focused on advancing integration of mental health care into primary health care. The Law also smoothened the ratification of a new pasung policy in Health Act No. 54 in 2017, the “Countermeasures against Pasung in People with Mental Disorder.” The Act is well planned and thorough, with emphasis on three stages: (1) explore the reasoning from the family perspective, (2) urge family to participate in the rehabilitation process of PMHC, and (3) resolution of the pasung situation by improving relationship between PMHC and their family, focusing on communication between the two.

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The plan further involves health care providers to do home care visits, social workers to train vocational skills, employment sector to provide labor opportunity, NGOs to promote sociocultural inclusivity, and local government to actively support and regulate all parties involved in the care for PMHC. Another innovative plan was also launched alongside in 2017, termed Healthy Indonesia through a Family Approach Program (Program Indonesia Sehat dengan Pendekatan Keluarga, PIS-PK) through the Ministry of Health Law No. 43/2016, which mandated dedicated trained workers to visit all families in their catchment area and assess their health conditions across 12 domains, including mental health. Largescale recruitment and training of workers and kader were conducted in Puskesmas across the country. This family-based program also includes early detection and management of mental health conditions within family members (e.g., screenings of adolescents with vulnerabilities). Via home visits, workers are expected to readily detect cases of pasung or early signs of exclusion within a PMHC family member. Formation of peer support groups and economic empowerment or skill training are also facilitated in Puskesmas via this program. As of 2020, the PIS-PK has reached 72% of all households in Indonesia (Irmansyah 2020). Assessments results are built into a database, which is helpful for health policymakers at all levels to assess mental health needs in a particular area. Nevertheless, only a limited number of community health centers are capable, or sufficiently confident, of providing treatment to identified PMHC, due to inadequacy of psychiatric medications and sustainable human resources. Recruitment of community health workers, social workers, and kader volunteers was ramped up through several novel projects, such as the formation of Community Mental Health Action Team (Tim Pelaksana Kesehatan Jiwa Masyarakat, TPKJM), and the pasung rapid response team by Ministry of Social Welfare. A summary of nationwide programs and agendas enacted by the national government to promote inclusivity of PMHC is listed in Table 5.

6

Conclusion and Future Directions

Promoting social integration and inclusivity of PMHC, not merely as rhetoric, is a long-hauled endeavor. Government can and should do more to actively prioritize the issue of mental health, especially in the case of pasung and human rights violations, rather than mere reactionary response to pressure from rights watch groups. The 2014 Mental Health Act and the 2017 Pasung Act are steps in the right direction, but programs implementation should be ramped up with sufficient budget allocation. Owing to these programs, the situation surrounding pasung in Indonesia has been improved in the past decade; however, sustainability is the key issue. The risk of re-pasung may also be lessened by implementing social empowerment programs, job training, and education of family or social support; all facilitates the slow yet necessary process for PMHC to integrate back into functional society. Lastly, there is a paucity of evidence in the perceived exclusion as well as the effectiveness of social inclusivity programs for PMHC, especially more so in LMICs. Nevertheless, there is an importance in taking not only Western-based

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Table 5 Ongoing nationwide initiatives by the Indonesian government to counteract pasung and promote inclusivity of people with mental health conditions Program Community Mental Health Action Team (Tim Pelaksana Kesehatan Jiwa Masyarakat, TPKJM)

Toward a Pasung Free Indonesia (Menuju Indonesia Bebas Pasung)

Pasung rapid response team (Tim Reaksi Cepat)

Information and Social Service Unit (Unit Informasi dan Layanan Sosial, UILS)

Mental health training modules in Puskesmas

Mental Health Alert Village (Desa Siaga Sehat Jiwa, DSSJ)

Healthy Indonesia through a Family Approach Program

Definition A coordinating team between the Department of Health and other departments at the provincial and district levels, trained to monitor and facilitate the release of people from pasung. Consists of a planning team (provincial level) and acting team (city and regency level) An umbrella policy by the Ministry of Health, aiming to eradicate pasung in all corners of the country. Collaboration between government sectors and the community is encouraged to achieve this Assembled by the Ministry of Social Welfare to act from state run rehabilitation centers, the team is responsible for rapid outreach in response to any pasung cases. Lack of training caused struggle initially, but nowadays the team collaborates more with mental health NGOs to liberate PMHC under pasung Held by the Ministry of Social Welfare, UILS is a community based social rehabilitation program, facilitating PMHC to receive help and information regarding occupational training, jobs, and social activities, without them having to visit rehabilitation services (panti). Also include voluntary day care activities in the community A variety of training modules regarding mental health conducted in Puskesmas. One aimed toward doctors and nurses as a mental health team in Puskesmas. Another conducted by community mental health nurses, aimed toward social workers and kader for them to do home care and home visits Recruitment of village kader to launch awareness campaigns for the community, to promote early detection of mental disorders and help seeking when someone is suffering from a mental problem. Also includes antistigma education to the village inhabitants Family based approach where trained health and social workers conduct home visits to assess 12 indicators, one of

Year started 2002

2010

2010

2013

Ramped up since 2014

Ramped up sporadically since 2014

2017

(continued)

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Table 5 (continued) Program

Definition

(Program Indonesia Sehat dengan Pendekatan Keluarga, PIS PK)

which is mental health. Any poor outcomes prompt immediate connection to relevant healthcare services. Workers also ensure health insurance coverage to families. PIS PK was later adopted into the national Minimum Standard of Care as per Government Act No.2/2018 Based on the Ministry of Village Act No.19/2017, directing prioritization of district funds for community based health rehabilitation for village inhabitants, including mental health Incorporation of psychiatric care into public general hospitals, to bring closer access, reduce stigma, and provide holistic therapy, as PMHC are also prone to experience physical health problems Change and improve the oppressive image of hospitalization within mental wards. The government conducts periodical accreditations to hospitals, and there is a call toward prioritization of humane conditions for inpatients in mental hospitals, while still implementing proper safe wards practices Better availability for psychiatric medication through the national formulary, updated every 2 years Case management after hospitalization, establishment of halfway housing for temporary rehabilitation, and referral back to Puskesmas before returning to family and the community. Prevention of re pasung is of importance

Village fund (Dana Desa)

Psychiatric care in public general hospitals

Reshaping of mental wards

Medication availability

Posthospitalization care program

Year started

2018

Continuous

Continuous

Continuous

Continuous

approach of epidemiological and evidence-based researches, but also qualitative assessments, ethnographic studies, and culturally nuanced interviews to directly listen to the people’s voice. Such data would be of paramount importance for all investigations regarding PMHC and stigmatized groups in general.

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Part IV Striving Toward Inclusive Research: Research Methods for Doing Research Inclusively

Focus Group Method Doing Research Inclusively and Supporting Social Inclusion

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Melanie Nind, Alex Kaley, and Edward Hall

Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Doing Research Inclusively . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Focus Group Method and Inclusive Purposes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Working Inclusively . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Being Inclusive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Being Transformational . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Being Democratic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Being Co constructive . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Decision Making Within Focus Group Method and Methodology . . . . . . . . . . . . . . . . . . . . . . . 6 Managing Focus Group Interaction for Doing Research Inclusively . . . . . . . . . . . . . . . . . . . . . 6.1 Doing Research Inclusively, Doing Research Well . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Self Building Social Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter relates to the inclusive or democratic turn in social science research. Increasingly, researchers are seeking to shift the dynamics of research production away from doing research on people, mining them for information, and towards researching with participants and recognizing that research needs to be purposeful and beneficial for participants. One important way of doing this is by creating M. Nind (*) Education School, University of Southampton, Southampton, UK e mail: [email protected] A. Kaley Division of Health Research, Lancaster University, Lancaster, UK e mail: [email protected] E. Hall School of Social Sciences, University of Dundee, Dundee, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_57

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vibrant interactive spaces in which best use can be made of participants’ potential not just to contribute, but to learn from each other’s contributions and come to know themselves and their own situation a little better. Focus groups can create these spaces, especially when the researcher is alert to their inclusive and transformative potential and open to the idea of hybrids of focus groups and other methods. Taking a Freirean approach to the focus group method, the authors have been using focus groups to support participants’ power in the research process. This comes through embracing the praxis of defining their focus collaboratively and by embedding the research authority in the interactive space between individuals. The chapter shows how focus groups can be political or playful as a means of co-production. This will be illustrated using data from studies involving people with intellectual disabilities, where the mutual support among those in dialogue is evident. The authors argue that the experience of taking part in focus groups enhances the social inclusion of those involved. Keywords

Focus groups · inclusion · Participatory methods · Co-production · Collaboration · Democratization

1

Introduction

Among the range of methods for doing research inclusively, the focus group method merits attention. Once the realm of market research, focus groups have gained popularity in social research (Morgan et al. 2008). The focus group method has also enjoyed considerable diversification, meaning that reference to more recent literature on the method will lead the reader to a range of focus group forms and research designs. These include online focus groups (Lijadi and Schalkwyk 2015; Woodyatt et al. 2016), repeat focus groups (Morgan et al. 2008), and cross-cultural focus groups (Hennink 2017). All focus groups involve group discussion among a small group of (often 6–8) participants in response to questioning or stimulus materials. Nonetheless, as Barbour (2017, p. 2) clarifies, within focus group adoption, “orientations range from the more traditional usages (e.g. in order to gauge participants’ views) to approaches that take a more participatory – even politicized – approach to the collective production of discourse.” The intention in this chapter is not to provide a comprehensive overview of the ways in which the focus group method has evolved, but rather to concentrate on how focus groups provide an option for researchers wishing to work inclusively. This inevitably leads to emergent designs and to hybrids of focus groups and other participatory methods. The authors explore the potential of these methods to democratize the research space, to disrupt traditional power dynamics between the researcher and researched, and to bring transformative benefits to everyone involved as they engage in co-production. The chapter is organized to move from the broader matters of focus group design through to the minutiae of focus group interaction. Examples from the authors’

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research practice illustrate the potential of focus group method for supporting inclusion. These examples from focus groups with people with intellectual disabilities show that verbal eloquence is not a requirement for high levels of engagement in focus group interaction. First, though, the chapter clarifies the meaning of doing research inclusively and the nature of focus group method, before making the argument that focus groups serve inclusive purposes.

2

Doing Research Inclusively

Research in many social spheres has undergone a democratic turn (Nind 2014). In particular, research with disabled people, with indigenous people, and with children and young people has been challenged to make changes, to ensure research is socially just and the research relationship more equal (Milner and Frawley 2019). Inclusive research has reached many disciplines, but inclusive health research is less common despite the drive for patient involvement in health service delivery (Frankena et al. 2019). Nonetheless, Frankena et al. (2019) have worked to reach a consensus statement on inclusive health research pertaining to people with intellectual disabilities through a dialogic process and building on what is known about inclusive research more generally. This emphasizes the attribute of an inclusive ethos rather than any particular methods. Those involved have underlined benefits of this approach, including empowering people with intellectual disabilities and increasing the relevance of the research. Doing research inclusively means doing research with or perhaps for the normally subjugated group of interest, rather than doing research on them (Darbyshire 2000; Walmsley and Johnson 2003; Chown et al. 2017). For proponents of participatory and inclusive research, this is the right thing to do – an ethical imperative but also related to doing research well by making use of insider knowledge (Holland et al. 2008; Nind 2014). It means, for example, ensuring that in the proliferation of research on children’s health and social care, researchers move away from the “paradox of the ‘missing child’” (Darbyshire et al. 2005, p. 419) whereby children are absent as if without voice or agency. This has led to an increased involvement of children as participants in research and a growing body of literature on the role of children and young people as co-researchers (e.g., Thomson and Gunter 2007; Kellett et al. 2004; Bradbury-Jones and Taylor 2015; Chae-Young et al. 2017). Researchers committed to a more democratic approach may refer to their research as participatory, emancipatory, cooperative, partnership or user-led research, peer research, community research, activist scholarship, decolonizing or indigenous research, or most broadly inclusive research. There have been various attempts to define these categories of research, often in relation to each other and to what is seen as traditional research. Participatory research is “a research process which involves those being researched in the decision-making and conduct of the research, including project planning, research design, data collection and analysis, and/or the distribution and application of research findings” (Bourke 2009, p. 458). It is distinguishable from emancipatory research in which total control is assumed by (representatives of) those being researched. Oliver (1997) describes this as less changing the rules of the

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game and more changing to a different game altogether, whereas Kiernan (1999, p. 45) has depicted the difference as “more a matter of emphasis than kind.” For Walmsley and Johnson (2003), introducing the term inclusive research was a way to get away from these positions and embrace both, and for Nind (2014), the term is deliberately inclusive of all the variants. Important features of inclusive research are: involving people from the groups being researched in shaping and sometimes doing the research, ensuring the research addresses issues that matter to them, working to access and represent their views and experiences, valuing these key stakeholders as “experts by experience,” and making the products of the research accessible and useful to them (Walmsley and Johnson 2003). In child-led/ children’s research particularly, there have been attempts to depict hierarchies of involvement, drawing on Hart’s (1992) ladder of participation. This organizes stages from manipulation (nonparticipation) to child-initiated optimal involvement. Others, such as Treseder (1997), prefer a more pluralistic stance, accepting that the level and kind of involvement necessarily varies with the purposes of the research and constraints placed on it. Nind and Vinha (2014) seek to move forward from the fight to claim the moral high ground over which research is truly participatory or inclusive. Their proposition to write about doing research inclusively, rather than doing inclusive research, recognizes the value of the active effort rather than the commodity and the diversity of ways in which one might do research inclusively. Another central debate in the literature concerns the difference between participatory research and participatory research methods. Thomson (2007, p. 209) argues that the methods in and of themselves are not participatory; it is the way in which the researcher employs those methods that matter: ‘Participation’ is embedded within the social spatial interaction between participants, which includes the researcher and rests on how researchers invite participants into a research arena and facilitate their exploration and sharing of views on a topic. Participation is not inherent to the research methods themselves as some account of participatory methods seem to imply.

Thomson’s (2007), 2010) view of “participatory research as spatial practice (Kesby 1999), designed to create spaces and channels for individuals to discuss issues based on their own life experiences,” is persuasive. Thus, from this perspective, the focus group method is less a participatory method and more a method at the disposal of the researcher seeking to work in inclusive ways – a means to create such spaces. This echoes the argument of Lehoux et al. (2006, p. 2091) who conceptualize focus groups in health research as “social spaces in which participants themselves construct the ‘patient’s view’.”

3

Focus Group Method and Inclusive Purposes

So, the chapter turns to the nature of the focus group method and the kinds of research that incorporate focus groups. Focus groups are not simply group interviews. In group interviews, the questions come from the researcher and the answers

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are directed to the researcher. In focus groups, in contrast, the goal is to stimulate horizontal interaction between participants so that the talk does not need to go through the researcher; participants engage in discussion with each other, and as Morgan (2017, p. 412) points out, the discussion should be “equally interesting to both the researchers and the participants.” There should be an ongoing connection between what people contribute (Morgan 2012), so that the interaction takes the talk to new places and new knowledge. In focus groups, people share opinions and emotions, they compare, reflect on, and develop thoughts and experiences. The dialogue that is generated provides collective insight because people listen to and learn from each other. Research projects can be built around focus groups at their core (focus group method) or they might involve multiple methods with focus groups as one of those methods. The research design might have focus groups ahead of a survey, or before or after individual interviews and play a supporting role in making the other methods more relevant and effective. Focus groups are usually conducted at the stage when the researcher knows least about the topic and wants to explore it with others (Morgan 1997). Even then, running a pilot focus group can be beneficial. Another research design feature is that the focus groups themselves might include or dovetail with other methods. This is often the case with photovoice, a participatory method in which participants use photography, and stories about their photographs as a way to document their lives (Wang and Burris 1994; Pink 2001; Aldridge 2006). When the stimulus for the group discussion is a photo or piece of video, then the focus group takes on features of elicitation methods or stimulated recall interviews. Nind et al. (2016) discuss how these kinds of focus groups can be made more or less participatory in nature. There is a proliferation of methods that are hybrids of focus group and other methods. This may bring in metaphor techniques (Nind and Vinha 2016), intersect with research diaries (Nind and Lewthwaite 2018), or operate within a playful toolkit (Prades et al. 2017). Again, the researcher needs to be led by their purpose, both in supporting inclusion and more widely. The many and complex decisions to be made when designing research using focus groups are revisited in the Sect. “4.” First though, it is important to understand focus groups a little more and to articulate their potential for doing research inclusively. While the focus group method is widely understood to be well suited to exploratory, interpretive, and multimethod research (Wilkinson 1993), here the argument is made that it is also aligned to the needs of researchers who want to work in inclusive ways and who want their research to support the social inclusion of their participants.

4

Working Inclusively

4.1

Being Inclusive

The very essence of a focus group is a dynamic interaction process in which those participating respond to each other. It is this trust in the participants – to take the talk to areas of greatest importance to them – that is so valuable when their ways of

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knowing, concerns, and lenses on the world are the researcher’s priority (Kitzinger 1994). In this way, focus group participants “transform into co-authors of the emerging narrative” (Hesse-Biber and Leavy 2011, p. 181). Kamberelis and Dimitriadis (2005, p. 887) refer to focus groups as potentially “deliberative, dialogic and democratic practice.” This relates to the core nonhierarchical approach to knowledge production (Bagnoli and Clark 2010). For some researchers, working with particular groups of participants is what leads them to employ the focus group method as well as to work in inclusive ways. According to Kitzinger (1994), focus groups are useful when research participants may be seen as difficult, disenfranchised, or stigmatized. For people who are often silenced among majority populations, focus groups can be liberating places to be heard. They can create what feels like safe spaces to talk (Dodson et al. 2007). There are excellent models of focus groups being used within work with people with intellectual disabilities. For example, Bollard (2008) observes how the focus group method can enable people with intellectual disabilities to “collectivize” their personal experiences of attending doctor appointments, although this was dependent on the presence of a skilled facilitator. Similarly, Gates and Waight (2007) found that a participatory approach to focus group research had the potential to gather rich data about people’s experiences of accessing mainstream mental health services (or lack thereof). There are other fine examples in the literature of researchers who have used focus groups within a participatory framework with children and young people. Thompson et al. (2017) employed focus groups with 12- to 13-year-olds to ensure their role as producers of knowledge in a study on urban regeneration following the 2012 Olympics in London. They combined the focus group essence of coming together to talk, with various participatory methods such as playful use of a mock television studio and using video clips from one focus group to stimulate talk in a repeat focus group. Darbyshire et al. (2005) chose focus groups for their research with children aged 4–12 years about their experiences of physical activity. This choice reflected their understanding that children are largely comfortable and familiar with group discussion and a desire to enable the children to discuss and articulate “in their own words” (p. 421). Their participatory stance led them to incorporate fun childcentered activities within the focus groups including mapping and photovoice. This was about increasing “children’s opportunity to choose and have at least partial control about how to contribute and what to say” as well as helping to engage them and demonstrate recognition of them “as active agents in the creation of their worlds” (p. 424). In health and social care research, the focus group method is widely used for eliciting the health experiences (and knowledges) of patients, service users, and chronically ill individuals. Focus groups are often considered as an efficient means of eliciting the patient experience on a broad range of topics, from a number of individuals at the same time. As such, the practical advantages of the method can result in its “lazy and uncritical use” (Barbour 2012, p. 2). However, there are numerous examples of health and social care researchers using this method in more nuanced, sensitive, and inclusive ways. For example, the community-based

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participatory study of Ferrera et al. (2016), exploring African American women’s perspectives on breast cancer and its treatment, employed the focus group method as a way to gather shared cultural and community understandings, which, they argue, were most effectively elicited through facilitated group interaction. Similarly, Lehoux et al. (2006) describe the focus group method as a useful way of exploring the processes through which knowledge is shared, acquired, and contested, in the co-construction of the “patient’s view” (p. 2091) of their experiences of using hightech home care interventions. Also, research conducted with young people exploring cultural meanings of youth suicide, used activity-orientated questions in focus group research as a “fun” method for helping participants to discuss sensitive topics (Colucci 2007). The shared and supportive experience of the focus group method with people in similar circumstances is also evident in a study by Sharp (2017), working with people with dementia to examine their experiences of stress. Such research is also important because people with dementia are commonly not deemed capable of consenting to and participating in research, whereas Sharp (2017, p. 1430) emphasizes their rights “to be involved in research and be supported to do so in a meaningful way.” Going beyond individual experiences, focus groups in health and social care research can also be “deliberative” (Rothwell et al. 2015), that is, including in the focus group process providing information on topics for the discussion, to enable participants to develop knowledge and opinions (for example, Dixon et al. 2019).

4.2

Being Transformational

The emergence of focus groups for inclusive purposes relates to core theoretical ideas. One such idea is talk as transformational. Dialogue provides a means to reflect back on what one thinks and says; one can begin to see and challenge what may have been taken for granted (Hesse-Biber and Leavy 2011). This is Freire’s (1970) critical point, that through dialogue one does not just communicate one’s reality, but comes to know that reality critically – and therefore to better know oneself and one’s situations – which is a strong basis for change. This informed Nind and Vinha’s (2014, 2016) project to use the focus group method to support researchers with intellectual disabilities and academic researchers working with people with intellectual disabilities, to listen to and engage with a range of voices as part of naming and depicting the world of inclusive research collaboratively. Focus groups created the vibrant interactive spaces for this to happen. Participants both contribute and learn from each other’s contributions in the process in these dialogic spaces. Puigvert et al. (2012) are strongly influenced by Freire’s (1970) theory of dialogic action in which dialogue is an important tool in raising participants’ critical consciousness and leading to transformation. They have developed communicative focus groups as one of a group of methods in their critical communicative methodology (CCM) – a way of doing research that is fundamentally transformative. They explain: “Whereas focus groups usually aim at obtaining information from the perspective of the group without trying to reach a consensus, the goal of Communicative Focus Groups is to

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construct a collective interpretation of what can transform social reality” (Puigvert et al. 2012, p. 519). Whatever position is taken on reaching consensus, as Hesse-Biber and Leavy (2011, p. 165) note, “focus groups may be a profound experience for both the researcher and participants.” Focus groups also have a strong tradition in feminist research dating back to the 1990s (Wilkinson 1999). Seaton (2017), for example, not only connects use of focus groups with a relational framework in which focus group dialogue becomes part of crafting and negotiating one’s relational self, she also draws on feminist reseasrch. In reflecting on her focus groups with adolescent girls, Seaton cites Madriz (2000) work on women’s lives in which focus groups offered marginalized groups an opportunity to develop “collective stories and resistance narratives” (p. 369). Prior to this, for Wilkinson (1999, p. 224), focus groups offered a way to address “the exploitative power relations between researcher and researched.” In focus groups, she argues, researchers have less control over the dialogue that unfolds and they make themselves open to challenge by participants. Moreover, the focus group can act like a consciousness-raising group, building collective understanding, critique, and power. In a study by Ripat et al. (2020), in the context of a focus group with young adults with disabilities discussing images taken as part of a photovoice exercise, consciousness-raising among the young people emerged in which they became more aware of the discrimination and barriers to participating they collectively experienced.

4.3

Being Democratic

Focus groups can be a good match for researchers who seek to be more egalitarian in their approach. This is in keeping with the democratic turn in research (Blühdorn and Butzlaff 2020). Thomson (2007) is at pains to highlight that being present does not automatically mean having the power or resources to speak or be heard. In focus groups though, participants can gain power by outnumbering the mediator(s), which they commonly do, and by holding collective knowledge where this is the case. Though the authority of the researcher or moderator may be hard to shake, it can help when the researcher and participants share an aspect of culture or experience (Caretta and Vacchelli 2015). If inclusive techniques are adopted, focus groups can be a method for distributing some of the power that the researcher usually holds. Nind and Vinha’s (2014, 2016) focus group method within an inclusive framework reflected a conscious effort to embed authority not in individuals but in the interactive space between them. They did this by putting an emphasis on the creative process of making knowledge through dialogue and returning to points that participants discussed, affirmed, or challenged. It is entirely feasible to run focus groups in ways that reinforce traditional power imbalances. As Ayrton (2018) discusses, some people choose focus groups largely because they make power relations within the group visible as the interactions play out, while others select focus groups in a desire to minimize power. This, Ayrton (2018) argues, can be problematic if it means hiding power from view. In some texts

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on focus group method, “power is positioned as a procedural problem that sabotages interaction and therefore limits data quality” (Ayrton 2018, p. 325). From this perspective, power is something to be managed by the focus group researcher, who might select homogeneous groups of participants to flatten the hierarchies that might be evident. Ayrton (2018) chose instead to understand the power in her focus groups with South Sudanese diaspora in the UK, observing that participants variously “defended, contested and relinquished the ‘rule of the [focus group] game’” (p. 328). This highlights the need for a shared purpose for the focus groups, a mutual and reciprocal investment in understanding the phenomenon under discussion together, something that is critical to inclusive research. Similarly, Ayrton (2018) relays the story of one woman participant who, “with the support of her peers”. . . “eloquently describes the physical manifestation of her emotional suffering as a result of the post-2013 internal conflict in South Sudan in which her family members have been killed” (p. 330). This element of peer support is something that is very familiar to focus group researchers, helping to democratize the research endeavor and offer something to all. By not isolating participants, researchers can enhance their authority to speak and thereby disrupt traditional research power dynamics. It is helpful to return to the stance that inclusive or participatory researchers create research spaces full of potential. Thomson (2007) argues these spaces may be closed, invited, or claimed. In closed spaces, the researchers have identified the problem, made the decisions, and left the participants just to “fill in the gaps” (Thomson 2007, p. 210). Invited spaces are more consultative, and claimed or created spaces are more “organic” and more under the control of the participants. They are spaces where, through interaction, negotiation, and dialogue, power can be replicated or created. When researchers seek to be more democratic in the research process, the latter kinds of spaces – that the focus group method can (but does not necessarily) afford – are attractive.

4.4

Being Co-constructive

The democratization of research and the drive for co-production are parallel or intersecting agendas. Co-production brings into question who is actively participating in creating solutions, services, or knowledge (Whitaker 1980; Holt et al. 2019). More than this, proponents of co-production recognize that the act of co-producing involves and transforms, builds capacity and skills within, and even emancipates, those from marginalized social groups involved in it (Pain et al. 2011; Bergold and Thomas 2012; Glynos and Speed 2012). Holt et al. (2019) stress the defining features of co-productive research (being owned by those who the research is about and in their interest) and the impact of these on how research is co-designed to be “accessible and meaningful to those who participate with different bodily subjectivities and capabilities” (p. 390). In focus groups (or at least good focus groups), a form of co-production takes place. There is the interdependence of co-production in that the outcome of the dialogue could not have been reached without the process of the

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interaction. Also, paralleling other forms of co-production, in focus groups, the participating knowledge producers are valued as active and resourceful, creative assets rather than passive or malleable objects. Indeed, the very experiences that are shared are the “social products of group interaction” (Platts and Smith 2017, p. 28 after Morgan 2010, 2012). In gently mediated focus groups where the questioning is quite open, participants even co-construct “the research topic by what they include [d] within the boundaries of their discussion” (Morgan 2012, p. 167, cited by Platts and Smith 2017, p. 29). The focus returns here to the role of peer support for many participants from marginalized groups and the ability to construct more together than apart. Seaton (2017) captures the complexities of this when she describes a focus group as like looking through a kaleidoscope whereby “each individual experience [is] refracted through multiple lenses, a co-constructed image of self, made more complex and increasingly beautiful in its multiplicity” (p. 310). It is worthwhile noting that co-productive focus groups with some marginalized groups include advocates or supporters, as both facilitators of the participation of people with, for example, communication differences, and as a constituent elements of the people’s everyday interdependent lives (Power and Bartlett 2018); this involves careful management by the researcher before, during, and after the focus group. Clayton and Vickers (2019) emphasize the relationships that constitute co-production, and hence the embodiment and emotional character of the approaches and methods adopted; focus groups, as noted above, are based, and dependent for their success, on relationships.

5

Decision-Making Within Focus Group Method and Methodology

This part of the chapter addresses the decisions that the researcher has to make and how these relate to the mechanisms that impact most on conducting focus group discussions, particularly the selection of participants and the style of facilitation. Participants in focus groups are often people on the margins who may be hard for researchers to reach and engage (Krueger 1998). Whatever the group, readers of this chapter are likely to be concerned with their social inclusion and with their meaningful inclusion in research. A key decision is about whether to recruit focus group participants who are pre-acquainted with each other, thereby aiding trust but also risking fear of exposure, or to construct new groups of people previously unknown to each other. An important factor here is the sensitivity of the subject matter for discussion. A research design that can work particularly well for supporting inclusive research is to work with reconvened focus groups that meet on repeated occasions (see Nind and Vinha 2016 for an example). This design combines the benefits of pre-acquainted and constructed groups as, if handled well, the participants build trust in each other over time. A related decision concerns how homogenous or heterogeneous the focus groups are designed to be. As with the decision about prior knowledge of each other, the nature of the research topic and question will be influential here. Nind and Vinha

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(2016) involved groups that were more homogeneous in order to build confidence to speak. In bringing different ways of knowing into dialogue in research on what quality looks like in inclusive research with people with intellectual disabilities, they organized participants into four relatively homogeneous groups. The group of people with intellectual disabilities doing research inclusively could speak without fear of having their ideas dominated by others. The focus group of academics and people with intellectual disabilities who do research collaboratively could co-construct narratives about their practices in the interdependent ways with which they were familiar. The academics who use participatory methods, and the funders of inclusive research, each had their own focus group space to discuss topics in ways that suited them. The research was also designed with repeated focus groups to allow not only for reflection but also for ideas from each focus group to be fed through to the others, thereby bringing the fresh stimulus that a heterogeneous grouping might have offered. Kitzinger (1994) reminds researchers of the impossibility of achieving true homogeneity between participants; in this example, it was the relationship to inclusive research (the subject matter of the study) and degree of comfort with challenging concepts that was considered critical in the make-up of the groups. For Ayrton (2018), looking at trust with South Sudanese diaspora, nationality and gender were critical. She held separate groups with men and women “to accommodate gendered patterns of social interaction” and she reflects on how she “could have made further sub-divisions – for example, by age, level of education, duration of residence outside South Sudan or to separate out the narratives of different ethnic communities” (p. 333). This shows that group similarities and differences have levels of granularity to consider. At the time of writing, the global coronavirus pandemic is leading researchers across the globe to consider how they might conduct their research in digital spheres in order to maintain physical distance. Online focus groups are variations of the traditional face-to-group focus groups that were attracting growing interest even before this (Lobe 2017). The aim is generally to mimic the kind of interactions that would ordinarily take place, but choosing this option might require additional skills. It also requires additional decision-making too, such as between synchronous and asynchronous communication events, with the latter providing more time to reflect and less immediacy to the response. Additionally, the researcher might choose for the online focus group to be text-based or video-based. While building rapport and stimulating interaction may be more challenging online, there is considerable scope among all these possibilities to make design decisions that reflect the researchers’ goals in terms of inclusion. The size of the focus group and structure of the discussion are further key decisions. While the collective wisdom is that groups of 6–8 are ideal, Morgan (2017) encourages experimentation with group size to meet different ends. Perhaps more critical is the style of focus group moderation, which can range from more directed to more open, the latter having more in common with naturalistic conversation and being more suited to a participatory ethos. Focus group discussion may also be more under the control of the participants if the researcher opts for discussion stimulus that is visual or audio-visual (see Nind et al. 2015; Thompson et al. 2017).

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Managing Focus Group Interaction for Doing Research Inclusively

In this final section, the detail of focus group interaction becomes the focus, using examples from the authors’ own research involving people with intellectual disabilities. This illustrates both design issues and the interactive moves that can support inclusion. Here extracts of focus group data are used to support the teaching points from this chapter. The themes from the Sect “3” return: focus group method being inclusive, transformational, democratic, and co-constructive. Often, the examples show combinations of these features.

6.1

Doing Research Inclusively, Doing Research Well

The first example comes from a study of what constitutes quality in inclusive research with people with intellectual disabilities (see Nind and Vinha 2014, 2016). As outlined above, this study was designed with homogenous focus groups meeting recurrently to build knowledge collaboratively and iteratively. The recurrent focus group design was intended to provide a space for researchers with intellectual disabilities to formulate their ideas in dialogic spaces interspersed with reflective spaces. One practical challenge was finding ways to recap on what the groups had discussed in the previous meeting to support capacity to remember and reflect. This related to concerns with being both inclusive and transformational – enabling participants to participate actively and to transform their understandings of themselves and their work. One solution to this was in using a version of “I-poems” adapted from the voice-centered relational method/Listening Guide (Gilligan et al. 2003). This meant taking “I” statements from the transcripts and weaving them together in a series of themed poems. The poems provided powerful summaries of the topics using participants’ own words that they might remember. This was effective in triggering memories and emotional responses: Melanie (researcher): [reads I poem] Lou: What a good idea of, what a good way of doing it. Sometimes, if you do transcripts [they] can be a bit long, but actually putting [it] like that condenses everything. Melanie: So that works for you? Lou: Yes, I like that; it's an idea that I never thought about, but I like that. Melanie: [reads I poem ‘Reflections’] Malcolm: That bit it’s just like a story. It’s very [.]. When they get . . . writing like this, in put[ting] word[s] together as a poem, putting words together, what happens and what they are doing, it’s just getting the feeling of . . .

The risk in this addition of reading I-poems was that attention turned to the performativity of reading the poem aloud with participants praising the reading and one participant, Durbali, commenting it made you “want to sing a song.”

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Another challenge for the focus groups of researchers with intellectual disabilities was finding a way to talk about inclusive research, which is a difficult concept for any of the stakeholders. Nind and Vinha (2016) approached this by bringing two props to the focus group encounter. One was a metaphor – introducing the idea: if inclusive research was a cake, what would the ingredients be? This helped focus attention on what went into inclusive research to make it good. The other was visual aids to support the metaphor – an image of a cake and of some ingredients with a space to add a label. Becca, an experienced self-advocate and researcher, seized the idea immediately, volunteering “the topic we’re going to research” and labelling the sugar “topic.” Carl joined in, “The jam is going to be us, because we’re in the middle of the cake.” He used the metaphor to assert the central importance of people with intellectual disabilities, though later noted that academic researchers could be helpful too, explaining “you are university jam.” The metaphor supported a co-constructed approach to working through the ingredients/qualities of inclusive research, for example: Melanie (researcher): But Becca, the topic, could it be any topic or is there any particular topic? Becca: I don't know. I don't know. Carl: It must be a relevant topic. Melanie: Relevant to whom? Becca and Carl together: To us.

The activity could have been framed as a creative method or an elicitation group interview, but in this case, it formed a section of a broader focus group discussion and served to enrich the focus group method.

6.2

Self-Building Social Care

The examples from practice of using focus group method with people with intellectual disabilities illustrate the value of the method for including people who are less articulate in that the group dimension enables them to co-construct what they know. The next example comes from the authors’ study about how people in local groups in England and Scotland were “self-building” their daily lives in the absence of social care provision in day centers. The study was designed so that the researchers spent time with the participants in their daily life activities first, then conducted focus groups and followed up with individual interviews. This was to optimize the researchers’ understanding and the participants’ capacity to both contribute and benefit from taking part. The focus groups were organized regionally and involved participants who already knew each other. There were two focus groups about a month apart and the moderators (researchers) had a range of activities, developed with the advisory groups, that they could bring in to support participants as and when needed. One of the first tasks was to establish the focus group as a democratic space in which all voices were equal. One of the moderators did this by using an opening question that was inclusive:

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Andy (researcher): Right, so I think what would be good to start with is for everybody, I know we’ve said hello to everybody, but it would be really nice if we just go round the table and say who you are. Perhaps so that we can match the voices with the names as well, which is useful for the recording, if you could say your name but also perhaps how you got here today, okay? Some of you might have got a lift, some of you might have walked. Perhaps you could tell us how you got here today, that would be really interesting wouldn’t it? So we’ll go round, so I’m Andy and I came on the train today from [town], and then Mel gave me a lift from the station.

In this focus group, started in this way, the participants swiftly appreciated the importance of hearing from everyone and one participant, Max, took on co-facilitating, using his knowledge of his peers to help: Andy (researcher): That’s great, well we’ll move on to some of those things that you do outside of [the workplace], we want to talk about those things as well. So that’s brilliant, thank you Len. Max: Rafe’s next. What days do you come?

And later: Andy: Yeah, great. That’s fantastic, thanks very much for that. So that gives us a good idea of what each of you, how long you’ve been coming. Abe: Is it Andy, your name? Andy: Yeah, yeah. Abe: Andy, I was just saying to Rafe, tell Andy what you . . .

This dynamic may not always be welcome if the research goals are less democratic, but in a study designed to be inclusive, the assumption of power to lead the discussion in this way to bring in less vociferous peers was encouraging. Later in the focus group, there was an example of genuine co-construction as the researcher, supporting member of staff and participants with intellectual disabilities, jointly sought to solve the problem of what the participants understood about the financing of their daily lives: Melanie (co moderator): Does that mean that you pay to come here, or they pay you? I’m trying to understand that, how does that work? Rafe: How does it work? Well, so let’s say we provide a service. Kyle (staff member): Who provides the service? Do you provide the service? Rafe: Well all of us, all of [us] do the service. And Kyle, do we get paid to do that? Kyle: Do you get paid? Len: No. Rafe: Not really. Abe: I do. Kyle: Well who pays for it? Len: The government. Ian: I don’t know, but can I just say a minute , Abe: That person who does pay is you, Kyle Kyle: I pay for you to be there? Ian: No, let me explain

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This group enjoyed digressions too as they co-narrated a story about something going on in their workplace. It was important that stories they wanted to tell found a space in the shared dialogue. Max: Oh, I’ve got something to tell you all. Down at [named place] where all the trees are getting bogged down, they’re going to put some vegetables down there eventually. Abe: Wow! Max: Eventually. Ian: That’ll be the cafe. Abe: Do you know what’s his name, he was down there with us, that chap who works in the cafe with Pat and ? Ian: That’s Adrian. Abe: Adrian that was the one. You know, when we saw him he’d climbed all the way up the trees and got himself stuck.

The potential to co-narrate stories is an advantage of working with pre-acquainted focus group participants. Indeed, knowing each other can help people to feel confident about coming together to share stories and experiences, and can be a useful means through which to explore a particular theme or topic as shown here among another of the groups: Billy: And I feel like the bus drivers are, don’t have patience for you. Alex (researcher): So it’s not a very nice experience necessarily when you get the bus? Sarah: Some bus drivers moan at me. Billy: Hmm, me as well. Sarah: Cause my , disability Ed (co moderator): What do they say, what are they complaining about? Sarah: There’s a notice on the , there’s a notice in the bus saying, ‘Please look out your , your bus pass or your money before you board the bus,’ and sometimes you forget and you’re stepping in the bus, you’re looking your wallet for your bus pass [. . .] And they say, “Would you mind hurrying up please, you’re holding up the other customers, passengers.” And if you do something wrong, like if you put your bus pass on the wrong place, on the machine, they go [tuts and sighs] [. . .] It’s so rude. Matthew: They never say thank you. Alex: Do you feel the same Sarah, is your experience quite similar? Sarah: Because I say cheers to them, they just , Ed: They just ignore you, yeah. Matthew: There’s some annoying bus drivers, and there’s some nice bus drivers. Alex: Yeah, it just depends on what you get doesn’t it? Billy: You get shouted, well you don’t get shouted at, you just get told off if you don’t put your bus pass on the right place on the machine. Matthew: Put it there, [taps table], not there. Sarah: Yeah [all laugh].

In the example above, the supportive nature of the focus group experience among people who already know each other is evident. This demonstrates how focus groups can serve as a space in which participants feel recognized, validated, and understood, and create a context in which to share frustrating and exclusionary experiences.

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Another positive affordance of pre-acquainted focus groups is opportunities for peer support. The data extract below demonstrates how, in bringing people together to discuss a particular topic, participants may be encouraged to develop connections and solve problems between themselves. This illustrates the potential longer-term benefits of focus group method – beyond the life of the research project – the potential to develop and strengthen peer networks of support. Helen: I did have friends from here. And that’s not only you. Melissa: You’re a cheeky monkey, you. Helen: Hey, you can hear that on that [pointing to recording device] Melissa: I’m trying to be there, I’m there for you. Helen: Yeah I know you are and I understand that and I know you’re my friend, but that’s all. Melissa: I’m there for you if you ever need somebody talk to. Helen: The only thing that I talk to is the wall [. . .]. No, I don’t like it here at all. Melissa: Helen I would end up missing you if you left.

Importantly though, the potential for focus group method to create inclusive and validating spaces of peer support is not limited to participants who are pre-acquainted. The extract below is from a focus group with participants who did not know each other well before the research; it demonstrates the important role of the focus group moderator (facilitator) in encouraging collaborative reflection and engagement between participants. Alex (researcher): So that’s kind of a similar sort of story for you guys in the sense that the idea , that Helen you have moved and that you might need to move, and I guess thinking about choice. Linda: No, not having a choice. Ed (co moderator): Not having a choice? Linda: Not having a choice where you’re living, and not having a choice how, where you want to live, where you want to live [...] I mean having a choice of living by yourself or living with your parents, you know what I mean. Alex: And Helen, how did you feel when you were asked to move in with your sister, did you have a choice, or did you , was that decision made by someone else? Helen: Well I think they’ve made the decisions for me.

The role of the focus group facilitator in this context is, therefore, to tease out these commonalities, in terms of shared experience, while also enabling participants to make these connections themselves, thereby developing and enriching participants’ own understandings of important life events. All the data examples in this section demonstrate the importance of facilitating conversations with each other and not just between individual participants and the focus group moderator. Ensuring all voices are heard in group discussions is important in this context, and the role of the focus group moderator is to sensitively guide discussion, and bring in other voices if they feel one voice is becoming too dominant in the discussion. To aid this process, it is advisable to have a co-moderator, and sometimes, as in these cases with people with intellectual disabilities, a staff member or advocate to support participants. Depending on the needs,

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preferences, and characteristics of focus group participants, some people may need time with the researcher outside the focus group context to understand the topic or rules of the game or test their ideas. Researchers seeking to use focus group method to be inclusive of marginalized groups, such as people with intellectual disabilities, need to be flexible in their approach, recognizing that one-to-one conversations may still be important, especially for those individuals who are not confident to speak in a group, even with people they know. The researchers in the Self building social care research project, like those in the Doing inclusive research inclusively project, found that integrating visual and participatory activities in focus groups could be useful and inclusive for prompting discussion and facilitating greater, more equitable engagement within the group. In researching “self-build” social care, visual activities were sometimes a useful ice-breaker in getting the conversation started. Providing focus group participants with opportunities to represent their experiences visually using drawings or picture cards also helped to shift the emphasis from purely talk and text-based modes of communication and enabled participants to take part in a way that felt comfortable and engaging for them. For some, working with visual materials also proved useful as preparation ahead of participating in the focus group, while for others, being presented with a creative or visual activity could make them feel inhibited or anxious. Similarly, the use of directed visual activities in focus groups might serve to restrict the natural flow of conversation, particularly if the participant sample (and topic of focus) lend themselves well to discussion. Understanding when, and in what context, visual methods are a useful and inclusive tool is a matter of judgment for the focus group moderator who has to be vigilant, flexible, and pragmatic in the goal of using focus groups to conduct research in inclusive ways or for inclusive ends.

7

Conclusion and Future Directions

Focus groups are a long-established and widely used method for generating qualitative data, in academic and many other areas of enquiry. This chapter has demonstrated that focus groups can also offer a means to change the dynamics of the research process, enabling opportunities for peer support, learning, and potential transformation, including social inclusion beyond the group itself. Focus group method, employed using inclusive and co-productive techniques and mindset, can become a resource to develop more democratic social research, producing benefits both in the process of the research and in the outcomes, alongside other collective and participatory methods. Importantly, to be inclusionary and transformative, focus groups must be well planned, creatively managed, and sensitively mediated to ensure a context of inclusion and enable supportive discussion including everyone present. The future of focus group method is likely to be shaped in part by the impact of the global pandemic. Increasingly, researchers will develop ways of conducting focus groups at a distance, online and even asynchronously and text-based. Already researchers are experimenting with embedding focus groups in the form of web chats

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and findings benefits in terms of being able to include participants they might not otherwise have been able to reach, such as physically disabled people and people living in rural areas (Hinkes 2020). This will impact on potential power imbalances in ways that researchers might not be able to predict and bring in new technical possibilities and complications. It is the authors’ hope, however, that the practical promise of focus group method as a response to future challenges will not detract from the inclusive potential and the power of focus group participants to support one another. It is also hoped that involvement in focus groups will attract some people who have been marginalized by research in the past to want to take on active roles as researchers or co-researchers, pushing the democratic nature of research still further.

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Diversity and Inclusion Across Gender and Geography

A Qualitative Survey and Participatory Situational Analysis Amber J. Fletcher, Adela Tesarek Kincaid, Tara McWhinney, and Akram Kangouri

Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Background: The Policy4Women Saskatchewan Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Geography and Gender: Inclusion Challenges in the Saskatchewan Study . . . . . . . . . . . . . . . Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Part 1: Capturing Diverse Gender Identities and Issues in Survey Responses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Part 2: Participatory Situational Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 On Inclusion: Reflections and Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter discusses the methods used the methods used to engage geographically dispersed participants in a study of women’s and gender issues in Saskatchewan, Canada. The project faced unique challenges of inclusion, both geographical and social, and required an affordable research design. The chosen design was a primarily qualitative electronic survey and participatory mapping sessions (both A. J. Fletcher (*) Sociology and Social Studies and Community Engagement and Research Centre (CERC), University of Regina, Regina, SK, Canada e mail: [email protected] A. T. Kincaid International Indigenous Studies, University of Calgary, Calgary, Canada e mail: [email protected] T. McWhinney School of Social Work, Carleton University, Ottawa, ON, Canada e mail: [email protected] A. Kangouri Faculty of Information and Media Studies, University of Western Ontario, London, ON, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_58

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in-person and online), which used a real-time adaptation of Adele Clarke’s situational analysis method. This chapter discusses the benefits and challenges of both methods, focusing in particular on (1) the use of open, write-in survey questions to effectively capture gender diversity, including nonbinary gender identities, and (2) the use of real-time situational mapping done together with participants in a group setting both virtually and in-person. The authors discuss how survey participants critiqued the quantitative rating/prioritizing exercise, which caused the authors to refocus their methodology on the interconnectedness of issues rather than priority-setting. Challenges associated with virtual discussion groups are noted. Recommendations are presented for future projects facing similar challenges of inclusivity, diversity, and interconnected issues. Keywords

Inclusion · Gender · Nonbinary · Intersectionality · Survey · Situational analysis · Online · Virtual

1

Introduction

Doing truly inclusive research is challenging. Faced with the typical constraints of time and resources, researchers may need to think creatively about methods to ensure their studies reflect the diversity of participants and populations. This chapter describes a two-part research project examining contemporary women’s and gender issues in Canada. Considering the dual challenges of a demographically diverse and geographically dispersed population, the researchers developed a qualitative survey instrument followed by participatory situational mapping sessions held both in-person and online. The strengths and weaknesses of these methods are evaluated. Researchers have recently discussed various approaches for including diverse gender identities in surveys. In this study, the authors aim to contribute to this important conversation by presenting the results of their open-ended, write-in question on gender; they then evaluate the benefits and shortcomings of their approach. Further, in response to participants’ input, they abandoned their original plan to rank priorities using Q-method workshops and instead selected a real-time, participatory application of Clarke’s situational analysis (SA) method. To assist future researchers studying gender issues across geography, this chapter describes the design and evaluates the effectiveness of their methods.

2

Background: The Policy4Women Saskatchewan Study

In 2016, a group of Canadian researchers and feminist organizations developed a project to spark public conversation on women’s issues across the country. The project, entitled “Policy4Women,” was designed to engage the Canadian public in dialogue on the current state of women’s equality and to better understand public

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policy priorities. Five regional case studies—each employing a particular method of public engagement—were implemented across the country. The project was conducted in partnership with a national feminist organization, the Canadian Research Institute for the Advancement of Women (CRIAW), which helped to guide the research and distribute the findings. The Policy4Women project had a commemorative purpose in addition to its scholarly goal of designing and testing various methods of public engagement. Policy4Women was designed to recognize the year 2020 as the 50th anniversary of the 1970 Royal Commission on the Status of Women (RCSW). The RCSW remains a major historical event in Canadian women’s history: from 1967 to 1968, a team of seven government-appointed Commissioners launched a major investigation into the status of women. The Commission received 468 briefs, approximately 1,000 letters of opinion, and heard from 890 witnesses during its public consultations (Bird et al. 1970). One of the Policy4Women regional case studies was conducted in the prairie province of Saskatchewan. The researchers sought a method for public engagement that mirrored the original methods of the RCSW, including an open call for written submissions and an opportunity for people to speak about key issues. The Saskatchewan team selected an inductive design, which allowed participants’ concerns and priorities to define the conversation rather than being guided by predefined topics or questions from the researchers. The overarching goal reflected the main purpose of the Policy4Women project: to engage members of the public in dialogue and discussion on contemporary women’s issues. Researchers conducting the Saskatchewan case study faced several challenges. The first was geographical. The province of Saskatchewan covers over 650,000 square kilometers with a diverse rural and northern population that includes Indigenous communities, farmers and ranchers, newcomers, and older adults. Unlike the more urban regions of the country, Saskatchewan researchers needed a method to effectively engage a wide variety of residents across a vast geographical expanse. Secondly, a truly inclusive process was required to capture the range of concerns and issues affecting diverse women; this raised definitional challenges of categorizing “women” at all.

3

Geography and Gender: Inclusion Challenges in the Saskatchewan Study

In Saskatchewan, 33.2% of the population resides in rural areas (compared to 18.7% nationally), with another 17.7% living in small population centers (compared to 12.7% nationally) (Statistics Canada defines a “small population center” as having a population between 1,000 and 29,999 people) (Statistics Canada 2016). Over 36,000 people live in more than 40 small northern communities, which include over 19,000 people living in northern First Nations (Government of Saskatchewan n.d.). In the spirit of the RCSW, the authors sought to include broad public participation from knowledgeable people across the province. However, the challenges of a small research budget made it impossible to pay travel expenses for large in-person meetings.

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Few researchers have written explicitly about the challenges of engaging public participation across a geographically dispersed population. Based on their participatory design research in rural Scotland, Broadley and Smith (2018) identified three recommendations for engaging geographically dispersed participants: (1) use of visual and reflective practices; (2) bespoke, flexible methods to promote engagement; and (3) use of both remote and direct methods to strengthen people’s ownership of the project. Indeed, flexible visual methods were necessary and important in the Saskatchewan study. Although in this study the authors employed remote methods (e.g., video conferencing) to engage participants in the data collection phase, they also identified areas for improvement on the third aspect—ongoing engagement and participants’ ownership of the project. Beyond geography, a second challenge pertained to identity and inclusion in the study’s framing and survey questions. Although the original RCSW consultation focused on “women’s issues” specifically, understandings of women and gender have evolved significantly since the late 1960s, necessitating new methods of capturing the complexity of gendered and intersectional experiences. The authors needed an approach that would capture the ongoing relevance of socially constructed (but historically engrained) gender categories, which have contributed to differential experiences between “women” and “men” in the aggregate. For example, on average, women in Canada continue to perform a disproportionate share of childcare and domestic work (Moyser and Burlock 2018) and experience a wage gap ranging from 13% to over 30% (Block et al. 2019; Pelletier et al. 2019). This wage gap is exacerbated by the intersection of race and gender: racialized women experience a wage gap of 40% compared to nonracialized men (Block et al. 2019). Further, Saskatchewan has the highest rate of reported intimate partner violence (IPV) among all Canadian provinces, and three-quarters of these IPV victims are women (Conroy et al. 2019). The study design needed to recognize the ongoing relevance of such gendered issues, which do primarily affect women. While recognizing the ongoing perseverance and relevance of gender categories, the authors also sought a trans-inclusive approach that prioritized self-identification, did not entrench binary understandings of sex/gender, and included the experiences of gender-nonconforming people who may not necessarily identify as “women” but still experience gender-based oppression. Therefore, it was important that any recruitment posters or materials mentioned self-identification. A further issue revolved around whether the process should be open to those identifying as men. The original RCSW consultation was open to both women and men, and some men did participate in the process. Informed by recent theorizing on men and masculinity, the authors acknowledged that men do benefit from structural patriarchy and gender inequality (i.e., the patriarchal dividend) while also experiencing the constraints of rigid gender ideologies and roles (Knuttila 2016; Messerschmidt and Messner 2018). Men might wish to comment on gender issues affecting themselves or people they know. Therefore, the authors decided to keep the study open to all residents of Saskatchewan. In Sect. 3 below, the use of open write-in survey responses to capture gender diversity in the sample is discussed.

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Intersectionality was another key consideration. Despite the clear gendered trends evident in issues like violence, poverty, and work, women are not a homogeneous group. Important differences exist between women, which shape their experiences. Intersecting factors like “race,” culture, socioeconomic status, age, sexuality, location (e.g., rural or urban), and other differences interact with gender to create very different experiences, even within a particular gender group (e.g., Anthias 2013; Crenshaw 1991; Hill Collins 2015). Therefore, a set of detailed demographic questions was required to help identify intersections of identity and experience. As discussed further below, the authors quickly learned that attempting to prioritize complexly interconnected and intersectional issues was not effective, and they adapted their methodology accordingly.

4

Methodology

To address the dual challenges of inclusion (geography and gender/identity), a two-part project that included both virtual and in-person components was designed. Part 1 was an electronic survey built around three open-ended questions, a set of quantitative ranking questions, and a combination of open- and closed-ended demographic questions. Part 2 was a series of three group discussions held both in-person and online via WebEx. In the sections that follow, the authors describe their methodology and reflect critically on its effectiveness for engaging diverse participants.

4.1

Part 1: Capturing Diverse Gender Identities and Issues in Survey Responses

In the historical RCSW of 1967–1970, researchers distributed pamphlets in supermarkets and libraries, as well as through various associations and the media (Bird et al. 1970). In keeping with the spirit and method of the RCSW, the electronic survey was distributed broadly and publicly using social media (e.g., a public Facebook page, posts to Facebook groups about women’s/gender issues), emails to list-serves of organizations with a women/gender issues focus, promotion by CRIAW, and coverage in mainstream media (e.g., a French-language radio interview). A publicly accessible survey link and QR code allowed for broad sharing of the survey resulting in 458 responses. The RCSW had invited written submissions from residents of Canada responding to the question: “What Do You Have To Say About the Status of Women?” The Policy4Women survey used a similarly open-ended approach. After several rounds of peer review by eight researchers, the survey was revised, finalized, and distributed. Like the RCSW, the survey was primarily qualitative. It centered on three broad, open-ended questions: (1) What do you think is the most important issue facing Saskatchewan women today? For this question, please discuss only one issue (there will be an opportunity to discuss other issues later). Please provide as much detail as you wish.

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(2) What other issues are important to you? Please provide as much detail as you wish. (3) If you could work together with the government to make one change right now, what would that change be? The three main questions were supplemented by an additional, fourth question allowing elaboration: “Do you have any other comments or suggestions on the topic of women or gender issues in Saskatchewan?” Open-form boxes provided participants with the opportunity to describe and expand upon their answers. As demonstrated by the question wording, the goal of this study was (at least originally) to prioritize issues identified by participants. The intent of this policyoriented project was to obtain a clear sense of the most pertinent issues as a means of identifying policymaking priorities. Therefore, the survey also included one quantitative rating exercise, in which participants were asked to select their 10 most pressing concerns from a list of 23 predefined topic areas (plus an “Other” write-in option) (see Table 1). The 23 broad topic areas were adapted from a previous project by members of the Policy4Women team. After selecting 10 topics of concern, participants were asked to assign a score to each topic on a scale ranging from 10 (most important) to 1 (least important); participants were free to provide the same score multiple times if issues were of equal importance.

4.1.1 Including Gender Diversity in Survey Questions Inclusion came to the forefront in the design of demographic survey questions. Considering the intersectional focus of the project, the demographic questions covered a wide range of important information including location within Saskatchewan (e.g., farm, First Nation, small town, small city, large city), individual and household incomes, employment and sector of employment (e.g., agriculture, business, civil service), age, citizenship status, and education level. While information about income or citizenship can likely be adequately obtained using a closed-ended approach (e.g., having a thorough list of predefined answer options), questions about gender, “race”/ethnicity, and sexuality are more complex and multifaceted. Survey instruments often employ a binary “male/female” or “man/ woman” response option for gender/sex questions; however, this approach is now recognized as problematic (Westbrook and Saperstein 2015). Dualistic response options for sex or gender exclude a significant proportion of trans-identified and/or gender-nonconforming people, thus constituting a form of sex-identity discrimination (Davis 2018). Unfortunately, a common alternative is to add “Other” as a third response option—a similarly unacceptable solution that constructs nonbinary genders as literal “others.” Adding “Transgender” as a third option may be unhelpful for transgender people who identify as simply “male” or “female,” therefore contributing to the absence of information about trans people (Lussenhop 2018). To ensure maximum inclusivity, the authors opted for open-form, write-in responses to questions about complex identity factors. This included the questions about gender identity (“What is your gender?”), sexuality (“What is your sexual orientation?”), and race/ethnicity (“What is your race or ethnicity, e.g., Aboriginal,

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Table 1 Predefined topic areas for quantitative survey component 1 2 3 4

Areas of Potential Concern Aboriginal women Childcare Disability Discrimination and prejudice

5 6

Education and training for women Elder care

7

Environment

8 9 10 11 12 13 14

Farm women’s concerns Healthcare (physical health e.g., reproductive health) Healthcare (mental health) Housing Immigrant women’s concerns Isolation Jobs/employment issues for women

15

Justice, legal system issues for women

16

LGBTQ2I (lesbian, gay, bisexual, transgender, queer, 2 Spirit, intersex) people Media

17 18 19

Peace (versus militarization), state violence Poverty

20

Solidarity

21

Unpaid work by women

22

Violence against women

23

Women in power

24

Other

Description For example, justice, violence, sexualization For example, cost, availability, quality Differently abled women For example, racism, homophobia, transphobia, xenophobia, sexism For example, cost, availability, quality For example, cost, availability, quality, or the treatment of elders For example, provincial parks, deforestation, water quality, climate change Issues affecting women in agriculture For example, cost, availability, quality For example, cost, availability, quality For example, cost, availability, quality For example, rural women, northern women For example, job security, employment opportunities, pay (equal pay, pay equity) For example, women in prisons, inequality under the law For example, rights and well being

For example, treatment of women by the media, online “trolling” or harassment

For example, price of utilities, women’s pensions, minimum wage For example, connections among women, women’s solidarity with others For example, unpaid care work, childcare, domestic work, volunteering For example, harassment (physical and sexual), sexual violence, physical violence For example, in government, in management (jobs), media, in academia Please use the open box below to provide details

Asian-Canadian, White, Ukrainian, French? You may provide more than one.”). Recognizing the extremely high diversity in the latter question—such that examples were needed to assist participants—the authors supplemented the write-in question about race/ethnicity with a closed (yes/no) question to help clearly identify

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participants who self-identified as Aboriginal and/or visible minority (Terminology for this question was drawn from Statistics Canada to facilitate comparison with general population data. “Aboriginal” remains a legal term in Canada but is increasingly being replaced by “Indigenous” in popular usage. “Visible minority” is a contested term, with many preferring “racialized,” but is still used in official Canadian government statistics). Although preferable to binary options, open-form gender questions do have limitations. As Bauer et al. (2017, p. 2) noted, coding open-ended responses can be labor intensive, and the coding process may “force researchers to decide in which category to place participants for statistical analysis, a decision better (and more respectfully) made by participants themselves.” Considering the qualitative emphasis of the survey, the authors decided that an open-ended question would provide maximum flexibility to participants. Because they did not plan to identify statistical correlations, they expected that qualitative descriptors of gender and sexual diversity could be effectively presented in the reporting phase. Table 2 displays a “test run” to illustrate the challenges of retrospectively coding write-in responses. Participants used a variety of terms to describe their gender identity. Most reported as “female” or “F” to indicate female. In Table 2, an example comparison of the gender data in two forms is presented: on the left, participants’ original descriptors and, on the right, how the data might appear if data are coded by researchers into fewer overall categories. In line with Bauer et al.’s (2017) argument, this study then reflects on some of the problems associated with this simplification.

Table 2 Gender of survey participants Gender (Raw Data) Participant’s Own Descriptors Female/F/f Woman Cis female/female cis gender Woman senior disabled Straight female ally Female all anatomical parts intact Male Nonbinary I’m nonbinary and my sex is female Neither Genderfluid Female genderqueer Two Spirited womyn I no longer state gender

example comparison of original vs. coded data

Number Reporting 355 3 2

Gender (Researcher Coded Data) Number Researcher Descriptors Reporting Female/woman 363

1 1 1 6 2 1

Male/man Nonbinary/genderfluid/ genderqueer

6 6

1 1 1 1 1

Two Spirit Unstated

1 1

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As shown in the table, researcher coding reduces the total number of identity categories from 14 to 5. Importantly, the Two-Spirited identification was not coded into the “nonbinary/genderfluid” category. As an umbrella term to reflect individuals who held distinct gender identities and roles within some North American Indigenous cultures, some of which had nonbinary gender systems (e.g., three or more genders), Two-Spirit stands apart from terms like “nonbinary” or “transgender” because the latter terms originate from non-Indigenous and colonial/settler cultures (Cameron 2009). Despite only one Indigenous person reporting a Two-Spirit identity in the survey, this study recommends that researchers include this as a distinct response to reflect its cultural importance for many Indigenous people–provided participant confidentiality can still be maintained. Table 2 reveals some challenges that occur when researchers code write-in responses. First, the participant response “I’m nonbinary and my sex is female” distinguishes between gender and sex. Because a question about sex was not included, this was coded to reflect the participant’s description of their gender. While this reflects the general terminology used in public discourse, it may not reflect the participant’s original intentions. Relatedly, it is possible that some of the participants identifying as “woman/female” or “man/male,” for example, may have transitioned from another sex/gender category in the past. This project, therefore, supports other authors who have noted the usefulness of including both sex and gender questions (Bauer et al. 2017; Reisner et al. 2015). However, this study acknowledges that the discrete separability of gender and sex has long been questioned by gender scholars; separating these concepts may fail to acknowledge their mutual co-construction (e.g., Butler 1990, 1993; Lorber 1993). The example of researcher coding here also assumes overlap between terms like “genderqueer,” “genderfluid,” and “nonbinary,” which may or may not accurately depict individuals’ own identities or understandings. In addition, it is unclear what is meant by “I no longer state gender.” This response could indicate someone who is agender (i.e., identifies with no particular gender) or simply someone who did not wish to answer the question. Our challenge here reinforces the importance of a nonresponse option, even for write-in questions. A key question for researchers considering write-in identifiers is whether researcher coding of identity descriptors is ultimately necessary. As Bauer et al. (2017, p. 22) noted, such write-in questions may pose an “ethical problem in that such questions appear to allow participants to avoid simple categorizations, but then participants’ identities are categorized by researchers after the fact; the final categorization may be inconsistent with a participant’s self-categorization when given those categorical options.” The decision may depend on the purpose and scope of the study. For example, if the study is nomothetic and/or quantitative, using a set of (inclusive) closed questions may be necessary. Quantitative survey designs that seek to capture gender diversity may require the use of multi-question sets—for example, a question that asks sex at birth and one that asks current gender identity—to help ensure trans people are counted and included (see, e.g., Bauer et al. 2017). For idiographic and/or qualitative studies, open-ended questions give more opportunities to hear the voice of individual participants and to capture missing categories.

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For Part 2, the original research plan included a quantitative Q method to help triangulate top policy priorities with the survey data. Q method asks participants to place statements about a topic on a numeric grid that indicates their level of agreement or disagreement with each statement (Herrington and Coogan 2011; Dune et al. 2019). After viewing the survey data, however, the authors quickly realized that a quantitative rating method would not be feasible. The survey data contained 14 comments that indicated problems with the quantitative survey exercise. All of these comments noted the interconnected nature of the issues and the difficulty of prioritizing them. One respondent said: These and all others from the list are extremely important and are all very intersectional. One cannot be regarded as higher than another because it will result in further and other hardships and oppression for women.

Another noted: “All these issues are equally important and inter-related.” With these critiques in mind, the authors opted to redesign Part 2, choosing instead a more qualitative and interpretivist approach to examine intersecting issues.

4.2

Part 2: Participatory Situational Analysis

As the authors shifted from a priority/rating approach to focus on interconnectedness, they decided against using Q method for Part 2. Instead, they chose to adapt Adele Clarke’s SA methodology for participatory discussion groups. To the authors’ knowledge, this study is one of the first to adapt Clarke’s method by asking participants to create maps in real time as “analytic exercises” (see description of analytic exercises in Clarke 2003). SA methodology was developed by Adele Clarke (2005) as a way for social researchers to engage with the complexity of the social world. Rooted in a constructivist or postmodernist grounded theory approach, SA rejects oversimplified and generalized conclusions, offering instead a method for representing and engaging with complexity, multiplicity, and contradiction. Clarke maintains that more social science research that attends to complexity and diversity in order to create more equitable social policy is needed (Clarke et al. 2015). The main unit of analysis is the situation being explored (Clarke 2012)—here, women’s and gender issues in Saskatchewan. As Clarke (2012) noted, SA is explicitly feminist because it values the material, symbolic, and experiential, emphasizes researcher positionality, and attempts to represent all actors and discourses regardless of how much power they hold. SA produces three kinds of maps. Situational maps are an early, broad sketch of the situation. Here, analysts try to capture the entirety of the situation, including “all the major human, nonhuman, discursive, historical, symbolic, cultural, political and other elements in the research situation of concern” (Clarke et al. 2015, p. 13). Later, relationships and linkages between these elements can be added to the map (Clarke et al. 2015).

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The second type of map lays out the social worlds and arenas—that is, the various organizations and institutions, as well as the discourses and interactions between them (Clarke 2012). Using Clarke’s (2015) terminology, the general idea encompassing SA is that social life is organized into social worlds, or collectives, which can be formal or informal. Worlds organize around people’s shared interests, issues, commitments, and concerns. Worlds are fully or partially encompassed by arenas, which are broader than worlds. Arenas may include multiple worlds that intersect and overlap; they are areas of more sustained interest and concern, drawing together many social worlds over time. In relation to worlds, arenas are frequently sites of dispute and debate and are relatively perseverant compared to worlds. In SA, worlds and arenas can be mapped using circles of various sizes and positions, as discussed further below. The third type is the positional map, which tries to represent all possible perspectives on the issue, regardless of how frequently or infrequently they appear. This map displays “the major positions taken, and not taken, in the data vis-à-vis particular axes of variation and difference, focus, and controversy found in the situation of concern” (Clarke 2012, p. 397). Positional maps often use axes to show where positions sit in relation to each other. Existing examples of the SA approach can be found across the disciplines, including health sciences (French and Miller 2012; Gagnon et al. 2010; Genat 2009; Washburn 2012), sociology (Andersen 2010), social work (Chen 2011), psychology (Henckes 2011; Ness and Strong 2013), library and information science (Grace and Sen 2013; Vasconcelos et al. 2012), education (Harris 2011; Pérez and Cannella 2013), and anthropology (Carder 2008). In previous SA research, the analysis is almost always conducted by the researchers; however, in this study, the authors wanted to use the method as a participatory engagement strategy in which participants can create and share their own maps with the authors. Clarke and others (Clarke et al. 2015, p. 171; Clarke and Star 2008, p. 123) have confirmed the possibility and potential of modifying SA for various purposes. In the present study, it was necessary to modify the method for use in a relatively short time frame (2 hours for in-person and 1.5 hours for online, due to the potential for screen fatigue in online settings). The resulting adaptation was a hybrid of the three map types. A total of 14 women participated across the three mapping workshops: four in Group 1 (in-person), five in Group 2 (online using WebEx), and five in Group 3 (in-person). Participants voluntarily shared information about their own identities. Two participants self-identified as Indigenous (one First Nations and one Métis), one was a person with a disability, and one identified as a lesbian. Occupations covered a wide range of sectors, including policy, research, fine arts, agri-food, information technology, social work, community services, and healthcare. As researchers, the authors also participated in the sessions by drawing and sharing their own maps to reflexively recognize their positionality and perspectives. All mapping workshops were recorded and transcribed for later analysis. Using screen-sharing, the authors were able to take real-time notes in Group 2 (virtual), which allowed participants to elaborate or correct the notes. Groups began with the

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researchers giving a short presentation describing the basic definitions of arenas and worlds. The authors provided several visual examples of SA maps from their previous project on a very different topic (Kincaid and Fletcher 2017). Next came an initial “free recall” or brainstorming exercise (Johnson and Weller 2001), in which participants collectively listed all key issues pertaining to women’s and gender equality in Saskatchewan. Clarke (2005) described the initial SA process as the creation of “messy maps”; as such, the resulting lists of issues served as a relatively unorganized, general overview of all key issues concerning the study participants. Next, using colored pencils and paper, participants were asked to create maps of arenas and worlds represented by circles. The size of a circle (i.e., arena or world) indicated the relative importance of that issue to the participant. Relationships between issues, actors, institutions, policies, or other components were indicated by overlap or proximity between circles. Participants were also asked to consider power relationships and the distribution of power between issues and actors and to note these on their maps. Most participants created multiple iterations of a map before settling on the final version. When asked for feedback on the SA mapping method, participants responded positively and felt the method was useful in general. Some wished for a few predetermined arenas to start with, but others preferred an inductive approach: I like it; I think it is a useful exercise and I do think it is good that you didn’t give us one [preliminary map] to go off of because I know you wouldn’t want to put themes in our heads and then people might start to think, ‘oh politics should be a circle or violence should be a circle’ so starting fresh is good. . .. (Group 1 participant)

Some participants felt that an electronic approach using a word processing or presentation software (e.g., Microsoft PowerPoint) would have allowed more flexibility to change and resize circles as needed. A participant noted that this would also allow for collective mapping rather than each person creating their own individual map. Notably, however, there was little disagreement between participants in the workshops, and similar issues could be seen across the maps. Depending on the group dynamic, a collective approach may not effectively capture areas of disagreement or difference if participants are required to agree on a single map. The workshops resulted in 54 pages of transcripts and 11 maps (see Fig. 1 for an example). One participant from Group 1 was dissatisfied with her original map and sent a revised PowerPoint version a few days later, which she felt better represented her perspective. For the analysis phase, the authors discussed possibly developing their own meta-map of the participants’ maps; however, in light of the poststructuralist leanings of SA, this seemed reductionist and would serve to gloss over the complexity of issues and connections. Instead, they opted for a multistage process to collate and synthesize the results. First, the workshop transcripts were independently coded by three individual coders using NVivo qualitative analysis software. The authors used an inductive coding approach with no predetermined categories to identify all issues discussed at the workshops. Codes were primarily descriptive (e.g., “childcare,” “Indigenous

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Fig. 1 Example of a participant’s map. (Note: Participant’s name removed; used with permission)

women”) (Saldaña 2013; Liamputtong 2020), but due to interest in intersecting issues, the authors also coded data that either demonstrated strong interconnection between issues or where participants themselves observed interconnections. Indeed, like our survey respondents, mapping participants frequently spoke about the interconnection between issues. The following interaction from Group 3, which was coded to the “Interconnection of Issues” code, exemplifies this trend: Participant 2: So, I have three big ones that I saw and they all intersect so separating is impossible. Facilitator: Are they completely intersecting absolutely like there is one or . . . Participant 3: Because there are a few little spots where things aren’t. . . Facilitator: Yes, in our group on Sunday we had someone who said the same thing. She said like I just want to put the circles right on top of each other. Participant 4: Yes, that is how I was feeling.

In this way, the mapping workshop results further supported the survey findings about intersecting and interconnected issues. The descriptive coding approach allowed for matrix queries to be run in NVivo, which revealed areas of overlap between codes (i.e., overlap of issues). For example, in multiple instances, the same piece of data was coded to the “Indigenous Women” and “Racism” nodes. A similar overlap was found between “Elders/Eldercare” and “Poverty.”

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The next step was to document the arenas and worlds as participants identified them, using both the coded transcripts and maps. The authors began with operational definitions of arenas and worlds. These definitions were the same as those shared with participants through a preliminary presentation that guided the analytical mapping exercises. Arenas were described as major issues that were large and fairly consistent over time. Participants were asked to show which issues were bigger than the others by making the circles larger, smaller, or equal in size and by showing relationships between the issues by overlapping and connecting the circles. Worlds were described as detailed circles with all contributing elements related to the “large” issues (i.e., arenas), and participants were guided to consider several questions when incorporating worlds into their maps: How do specific issues fit within, outside, or between the bigger issues? Who is involved? Who should be involved? What has been done? Who has the power? Whose voice has been heard? Whose voice has not been heard? What is most pressing? The authors created a summary of all arenas and worlds from the participants’ maps. Commonly mentioned arenas included Economics, which was linked to such worlds as pay equity policy, minimum wage, and affordable childcare; Violence, which included worlds of violence against Indigenous women, racist violence, and domestic violence; Misogyny; and Racism. At the time of the workshops in 2018, the provincial government had recently cut the province’s public bus system (Saskatchewan Transportation Company, or STC). STC was the largest world for many participants and was connected to several different arenas (i.e., Availability of Services, Health, Policy, Social Justice, and Sociopolitical Climate). When discussing collectives within the worlds and commitment to action by these collectives, some participants identified themselves as feminists, and many discussed the need for more advocates for issues raised. Other common collectives mentioned were government or policymakers, women leaders or decision-makers (the lack of), and healthcare providers (mainly doctors). The participants raised various issues surrounding the discourses and actions of these collectives, such as governments increasing privatization of services and inadequate allocation of budget funding for issues raised, doctors not being aware of or sensitive to Indigenous women’s or trans women’s healthcare experiences and needs, and the challenges women face in positions of leadership within governments and in male-dominated fields of employment. The maps themselves tended not to have representations of these collectives, focusing more heavily on issues, but the collectives were identified with the coding of the transcripts from the mapping exercise.

5

On Inclusion: Reflections and Recommendations

Overall, the project revealed important themes pertaining to women, gender, and public policy in the province of Saskatchewan. Key themes included a resistance to austerity and its negative effects on women and other historically marginalized groups, intersectionality of issues and identities, and a focus on structures of oppression (e.g., systemic racism, patriarchy). The survey provided an initial

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indication about the importance of intersecting issues, which prompted researchers to revise the second method to more effectively understand these interconnections. A real-time, participatory modification of Clarke’s SA methodology allowed participants to identify key social worlds and arenas and to clarify the relationships between them. A significant strength of using an online survey was its efficiency in time, costs, and geographic breadth. Although access to technology and particularly the Internet was an issue for some participants, the online survey allowed a broad group of women in Saskatchewan to participate in the study. Convenience and confidentiality were other benefits of using an online survey. In terms of analyzing the data, participants could enter their responses directly and reduce the occurrence of errors in entering data (including identity factors) by researchers. Both the survey and mapping groups attracted a diverse group of respondents. As noted previously (and likely due to its topic), the project attracted a large number of respondents identifying as women, nonbinary, genderqueer, Two-Spirit, genderfluid, and so on. Of those reporting, 9.8% identified as a person with a disability; 6.6% identified as bisexual, queer, gay, lesbian, pansexual, or sapiosexual; 9.2% were Indigenous; and 3% were a visible minority. Unfortunately, Indigenous people, visible minorities, and immigrant people were underrepresented compared to their presence in the population generally at 16.3%, 10.8%, and 10.5%, respectively (Statistics Canada 2018). The survey was more effective than the mapping workshops at engaging rural participants. The percentage of survey respondents living outside a city (i.e., in a town, village, First Nation, or farm) was approximately 30%, which closely resembles the province’s rural population of 33%. Geographical location negatively affected participation in the mapping workshops. Some participants in rural or remote areas were unable to join due to lack of a stable Internet connection, lack of access to a computer, or other challenges associated with using a video conferencing/virtual program. One participant who was rurally situated indicated that she could not participate due to the lack of Internet connection and that she lived too far to travel. Researchers emphasizing inclusion across gender and geography may therefore wish to consider a combination of electronic and in-person methods to enhance inclusion. Particular attention should be paid to the best methods for engaging visible minority, Indigenous, and newcomer populations, who were underrepresented in the current project. While virtual meetings brought together participants from different locations, this approach also hindered collaboration in a number of ways. Digital divides have been identified across age, gender, race, and class which warrant greater attention to recruitment and support of diverse participants for online surveys and other online research exercises. Access to a computer and strong Internet connection is affected by socioeconomic class (Daniels 2009; Liamputtong 2020). As class is both gendered and raced, this has an effect on engagement of women and other gendered minorities, racialized populations, and those with lower incomes. Further, Fotopoulou (2016) identified an age gap between the digital literacy of older women’s feminist movements and younger feminists who are more comfortable

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with online communication technologies. Older women still engage with online communication but may face challenges with the technology. Therefore, any online research engagement project should target recruitment strategies toward increasing the diversity of participants and supporting the use of and access to online technologies. Indeed, practical challenges arose when conducting a participatory SA workshop online. First, it was found that the virtual session required more time than face-to-face sessions. In this workshop, the initial messy map session took nearly the entire session. More time was needed to get started, to introduce the topic, and to give respondents time to share their thoughts during the brainstorming session. It was difficult to exchange and comment on ideas presented by others (which happened organically when the in-person sessions were held). Technology made it difficult to have a conversation because people present one at a time, rather than engage with one another, and technology tends to obscure nonverbal forms of communication. Another practical challenge associated with the virtual session was the ability to collect maps from participants. Unfortunately, only one participant from the virtual session followed up with a copy of her map, despite reminders. This challenge relates to the third component of Broadley and Smith’s (2018) approach for research across geography—using remote methods to enhance people’s ownership of the project. Broadley and Smith (2018) suggest frequent and regular email contact, telephone calls, digital sharing, and conferencing sessions to increase ownership and participation from people located in remote areas. Rather than attempting to cover the initial “messy map” (i.e., free recall) and social worlds/arenas mapping in a single session, it may have been useful to do an initial virtual messy map to be shared through email with participants. Participants could be asked to identify important themes independently and to start thinking of how those themes are connected. Follow-up video conferencing sessions could then be used to explain the analytical mapping exercise and to engage the participants in a mapping session. Alternatively, multiple sessions would allow researchers to gather initial ideas from the first session and then share the resulting map electronically with participants, leading into a second session to develop cleaner social world/arena maps. However, from a logistical standpoint, it might be difficult to organize follow-up sessions with the same participants. Another alternative could be to provide a time limit for the brainstorming session and to move directly into mapping. In our case, this would have been difficult because respondents shared their personal experiences and opinions during the brainstorming session. The brainstorming session for all respondent groups (online and in-person) organically evolved into a deeper discussion that centered around issues women face in Saskatchewan. When the sessions were held in-person, each person spoke for a similar amount of time and the authors were able to facilitate the transition to mapping, whereas the transition was not as easy to facilitate during the online session where people felt that they had a limited timeframe to share their perspective, needs, and difficulties. Additional time and research is needed to develop the SA mapping methodology for effective online/ virtual use.

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Conclusion and Future Directions

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This chapter has described a two-part project aimed at engaging public dialogue on women’s and gender issues in the province of Saskatchewan, Canada. The project faced two main inclusion challenges pertaining to geography and gender. The first challenge was how to engage participants across the widely dispersed geography of Saskatchewan, a province with a large rural and remote population spread across 650,000 square kilometers—particularly within the confines of a small budget. To address this challenge, the authors designed a (primarily) qualitative electronic survey combined with both in-person and virtual discussion groups. A real-time adaptation of Adele Clarke’s situational analysis methodology, conducted together with participants in the discussion groups, allowed the authors to explore and map interconnection between issues. As a project examining women’s and gender issues, the second challenge was to design a flexible and inclusive approach to questions of gender identity. Rather than opting for binary or closed-ended survey questions that necessarily delimit identity options, the authors used an open-field approach to questions of gender, sexuality, and “race.” Although this approach worked well for the qualitative survey— resulting in 14 different gender responses and thus capturing the gender diversity of participants—such an approach would not be effective for larger-scale quantitative surveys seeking correlation. The current study shows that qualitative methods such as SA are well positioned to research multifaceted problems and complex questions. SA provides opportunities to show and focus on the interconnectedness of issues, which was a unique and useful approach to apply during in-person discussions, but the method was difficult to explain and apply online within the limited timeframe. Another benefit to the SA approach was in allowing for participants to freely, inductively brainstorm and map the complexity and multiplicity of women’s and gender issues through “messy maps.” Within the larger arenas they identified, participants generally included many mini-arenas and worlds. This demonstrates not only the interconnectedness of the issues but also the breadth and scope of participants’ experiences, concerns, and knowledge. This project suggests several recommendations and directions for future researchers. First, to ensure accurate and inclusive findings, survey researchers should avoid the male/female (or man/woman) binary in demographic questions about gender. Questions about both gender and sex can help capture trans identities and ensure that gender diversity is not masked over. While open-field questions may work well for qualitative surveys, quantitative surveys might benefit from multi-question sets that inquire about both gender and sex, as recommended by Bauer et al. (2017). Second, the findings reveal the value and potential of participatory situational analysis conducted together with participants. While virtual/online sessions enhanced inclusion, they also imposed some limitations. At the time of writing, the authors find themselves in the midst of the global COVID-19 pandemic. Virtual methods are becoming particularly pertinent for many researchers. To ensure full

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engagement, virtual methods may require additional recruitment efforts for underrepresented groups, sufficient technical support, and extra time to complete project activities. Keeping virtual methods simple and uncomplicated is key, both for participants who are less technologically inclined and also for those with low connectivity (e.g., rural and remote areas). Online communication can be used effectively to engage participants throughout the project, but such communication should be designed with care and intentionality. Acknowledgments This chapter draws on research supported by the Social Sciences and Human ities Research Council. The authors are grateful for the contributions of the Policy4Women research team.

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Researching Narrative Storytelling with Adults with Acquired Brain Injury

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Kate D’Cruz, Jacinta Douglas, and Tanya Serry

Contents 1 2 3 4 5 6

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Storytelling: An Everyday Experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sharing Stories of Lived Experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Creating a Safe and Comfortable Storytelling Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Adopting a Storytelling Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Creating a Narrative Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Narrative Profile Example of Research Participant: Kim . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Narrative Profile Example of Research Participant: Robert . . . . . . . . . . . . . . . . . . . . . . . . 7 Co constructed Approaches to Storytelling Engagement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Revisiting Stories Together . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Sharing Stories for Greater Impact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Narrative storytelling is gaining interest within healthcare as an inclusive approach to engagement in research and practice. This chapter examines the use of narrative storytelling as an approach to listening to and valuing the lived K. D’Cruz (*) Summer Foundation, Australia & Discipline of Occupational Therapy, La Trobe University, Melbourne, VIC, Australia e mail: [email protected] J. Douglas Summer Foundation, Australia & Living with Disability Research Centre, School of Allied Health, Human Services and Sport, La Trobe University, Melbourne, VIC, Australia e mail: [email protected] T. Serry School of Education, College of Arts, Social Sciences and Commerce, La Trobe University, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_59

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experiences of people with disability. The chapter commences with a brief description of narrative storytelling, positioning storytelling as an everyday human experience of connecting with self and others in a relational context. It then provides a more detailed understanding of storytelling, drawing from the findings of qualitative research that sought to explore the subjective experience of narrative storytelling from the perspective of adults with brain injury. Experiences of feeling heard, releasing emotions, and reflecting about self are discussed. Next, it explores the inclusive nature of storytelling in the practice/research context by outlining strategies to maximize the engagement of people with cognitive and communication impairments. The chapter concludes with a discussion about the potential value of sharing stories of lived experience of disability to positively impact the lives of others. In this context, narrative storytelling is recognized as an opportunity for meaningful occupational engagement and a way to connect with and contribute to society. Keywords

Narrative storytelling · Lived experience · Disability · Acquired brain injury

1

Introduction

The aim of this chapter is to outline the potential value of narrative storytelling as an inclusive approach to engagement in research and healthcare practice. In doing this, the chapter draws upon relevant research evidence as well as knowledge gained from professional experience as qualitative researchers and healthcare professionals with backgrounds in speech pathology, neuropsychology, and occupational therapy. This chapter is underpinned by a shared vision and commitment to understanding the lived experience of disability. Throughout the chapter, examples are drawn from the findings of two qualitative research studies conducted to capture the subjective experience of sharing personal stories of lived experience of disability from the perspective of adults with acquired brain injury (ABI). These studies include a grounded theory study of an advocacybased storytelling program in which stories of the lived experience of disability are shared to advocate for the rights of young people living with disability. Storytellers with brain injury and facilitators of the storytelling were interviewed about their experiences of the storytelling program. A storytelling interview approach was used to support the engagement of participants with cognitive and/or communication challenges and a model of storytelling, grounded in the experiences of the participants, was developed. The second study evaluated a participant-led video-storytelling (PLV) project in which adults with brain injury developed a short 5-min video about themselves and how to best support them to participate in everyday living. The storytellers and their close others were interviewed about their experiences of both developing the videos and using their videos to communicate their support preferences with close others and support workers. The participant-led video-storytelling project

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was found to be an empowering experience with all participants reporting that the videos were a practical and effective tool to communicate their support preferences. It is hoped that this chapter encourages healthcare professionals to consider ways to adopt a narrative approach to engagement and contribute to truly hearing and valuing the voice of lived experience which can lead to more social inclusion of people with disabilities.

2

Storytelling: An Everyday Experience

Humans are storytellers. While there are a number of variables that may influence the way in which stories are shared, such as individual preferences and cultural context, storytelling is a universal experience. In the everyday context, humans seek out opportunities to communicate experiences with others: sharing anecdotes, giving and receiving advice, engaging in dialogue and finding commonalities in shared experiences. There are a variety of ways in which storytelling occurs; inclusive of spoken, written, and visual approaches. Spoken approaches include informal conversations or more formal presentations, interviews, singing, spoken word poetry, theatrical plays, discussions conducted in a group setting, or individual sharing. Written approaches typically include biographical stories, poetry, social media or blog posts, song writing, a reflective journal, or a published book. While visual approaches include digital stories, photography, painting, drawings, and visual imagery. The variety of storytelling approaches contributes to the accessibility of storytelling as an inclusive approach to human engagement. Central to the experience of storytelling is the relational context in which it occurs. The socio-relational process or act of sharing stories is defined as the storytelling (Gergen and Gergen 2014). Storytelling involves an interpersonal exchange (Riessman 2003) in which people connect and relate to the experiences of others (Adler 2012; Bury 1982; McAdams 2001). In the authors’ grounded theory study of narrative storytelling, the socio-relational context was central to the participants’ experiences of sharing their stories. The model of narrative storytelling generated from the study presents the process of storytelling as a series of relational experiences. While the relationship between the storyteller and the facilitator was the key relational experience, connections were also observed between the storytellers and the organization supporting the storytelling opportunity, as well as the broader social context. When considering the use of storytelling approaches, it is important to recognize the relational context and the role of the person or audience listening to the story. The storytelling experience may be enhanced or reduced by the way in which the storytelling is facilitated. When thoughtfully considered, the relational nature of storytelling presents an opportunity to maximize engagement of people who may experience barriers to participation, for example with cognitive or communication impairments. The temporal structure or plot of storytelling is defined as the narrative, comprising a beginning, middle, and end (McAdams 2001; Mattingly 1994; Polkinghorne 1996). The temporal structure supports the telling or sharing of stories,

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arranging the story into a meaningful and coherent form (Adler 2012; McAdams 2001). The temporal structure also supports the creation of new stories or chapters in a life story. Mattingly (1994) describes this process of story making as “therapeutic emplotment,” while Adler (2012) refers to the process as, “narrating experiences of change.” Drawing upon the temporal structure, storytelling contributes to identity development across the lifespan, integrating the past, present, and future (Adler 2012; Bury 1982). Life stories, similar to identity, are not static but rather change over time, influenced by life experiences, both everyday and exceptional, as well as the socio-relational context (Douglas 2013; Ellis-Hill et al. 2008; Shaddon et al. 2008; Ownsworth 2014).

3

Sharing Stories of Lived Experience

Central to the work of qualitative researchers and healthcare professionals is to better understand the experiences and life world of participants or clients (Liamputtong 2020). Adopting a narrative lens to practice and creating opportunities for people to share their stories of lived experience enables entry into the insider experience (Galvin and Todres 2013). In contrast to a reductionist or medical perspective, the insider perspective encompasses the whole of lived experience including strengths, challenges, losses and opportunities, vulnerability, and agency. Spence (1982) defines this as “narrative truth.” Listening to stories of lived experience not only engages with this holistic understanding of people but also positions the client or research participant as the central character in their story. For people living with disability, the opportunity to share their stories of lived experience affords the right to give voice to life as a person with a disability and to be an active participant in their recovery. Underpinning this right is recognition that the voice of people with disability, especially those with cognitive and communication challenges, is often not heard (Hersh 2015; Kaufman 1988; Prigatano 2011). Furthermore, creating opportunities for people with disability to share their lived experiences values the contribution of lived experience wisdom. Sharing stories of the lived experience of disability can be an empowering experience for the storyteller. Drawing upon research evidence in the context of narrative storytelling for adults with ABI, it is recognised that storytellers feel valued and heard through the opportunity to share their lived experiences. Participants have described feeling affirmed by someone taking the time to listen to their story, contributing to their sense of self-worth (D’Cruz et al. 2019a, b; Douglas and D’Cruz 2018). As evidenced in the authors’ research exploring experiences of narrative storytelling, as well as studies retrieved in searching the literature, storytellers did not necessarily enter the experience with expectations of therapeutic benefits or personal gain. Indeed, participants were often surprised by both their enjoyment of the storytelling and the sense of agency experienced through feeling valued and heard. For example, participants in the PLV project described being acknowledged as an individual, having a voice and exercising choice, and a sense of achievement.

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Participants have also experienced and been surprised by the emotional release that can frequently accompany sharing their stories of lived experienced. In a series of interrelated studies conducted by Baker et al. (2005a, b, c), the lyrics of 82 songs written by 32 people with TBI were thematically analyzed. The two most common themes included communication of messages to others and reflection of feelings of loneliness, isolation, happiness, lack of freedom, and anger. Research evidence in the context of storytelling following ABI suggests that sharing stories of lived experience creates space for personal reflection and expression of emotions associated with the losses experienced following injury. While the narratives in studies in which the participants had prolonged engagement in storytelling, typically shifted from communicating the experience of loss to expressing optimism for the future (D’Cruz et al. 2019a). In the context of the PLV project, the participants found storytelling and the creation of a short video to be a very effective method of communicating their needs and support preferences. They found that by virtue of their engagement in the production of the videos and ability of storytelling to capture their insider experience, the videos communicated their unique capacity and needs much more effectively than previously tried methods such as written summaries or support guidelines. With the experience of acquired disability, people experience a change in their life narrative, referred to as biographical disruption (Kaufman 1988; Prigatano 2011). For example, survivors of ABI frequently describe the experience of loss of their pre-injury identity and seeking to create a new post-injury self (Levack et al. 2010; Nochi 1998; Padilla 2003), while others refer to a process of transition (Ellis-Hill et al. 2008; Whiffin et al. 2019). Storytelling can assist with integrating aspects of the old narrative with the new, supporting adaptation and a shift to more “agentic” narratives (Polkinghorne 1996), Indeed, qualitative research studies in which participants share their stories of lived experience have been instrumental in both revealing this experience of loss of identity following brain injury, and recognizing the potential value of storytelling in reconstructing a new identity (Fraas 2015; Levack et al. 2010; Nochi 1998). In a scoping literature review of narrative approaches in traumatic brain injury (TBI) rehabilitation, analysis of the qualitative findings of 12 retrieved articles revealed an overarching theme of building a positive identity through storytelling (D’Cruz et al. 2019a). This finding was evident across spoken, written, and visual approaches to storytelling. For example, in a case study conducted by Pinhasi-Vittorio (2007, 2008), free writing was used as a strategy to support a young male to write about his experiences following traumatic brain injury. Through the opportunity of free writing, he expressed his feelings through poetry, developed confidence and pride in his writing, and engaged in a process of gradual identity transformation. In a more recent study conducted by Bohanna et al. (2019), another male survivor of traumatic brain injury shared his story of transition from hospital to home through paintings and coproduction of a film about his paintings. The authors described how the participant experienced healing and growth through reflecting upon his lived experiences and sharing his story. The experience acted as a catalyst for transformative personal growth.

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Creating a Safe and Comfortable Storytelling Environment

When considering opportunities for listening to the stories or lived experiences of clients or research participants, it is important to create a safe story sharing environment. While what constitutes a safe or comfortable space will be individualized, there are a number of key considerations to ensuring sensitive engagement (Liamputtong 2007), especially with research participants or clients who are most vulnerable due to injury-related cognitive and communication impairments. A key guiding principle is to privilege the experience of storytelling. Where possible, it is preferable to privilege storytelling from other roles that either alter the nature of the relationship or might distract from listening to the story. For example, this may involve ensuring the availability of a support worker to assist the storyteller with self-care tasks such as toileting or explicitly committing to a listening role and refraining from note taking and problem-solving in response to the shared story. These small acts demonstrate to the storyteller a commitment to be wholeheartedly present to listen to their story, in turn valuing the storyteller and their lived experiences. Adopting an intentional approach to the planning and implementation of the storytelling is also a key strategy to setting up a safe and comfortable environment. This involves tailoring the storytelling to the unique needs of each client or participant. Table 1 below outlines some questions to consider when planning a storytelling session. During the storytelling, the role of the facilitator is to listen to the storyteller and to be responsive to their needs, showing care and compassion. As with all client work, storytellers must be informed that they only need share aspects of their story that they are comfortable to share, and that they can stop the storytelling at any point if they are uncomfortable or feel distressed. This is particularly important for people who may experience distress recalling challenging or traumatic experiences. Most importantly, it is the role of the storytelling facilitator to support a positive experience for the storyteller, not shying away from emotional aspects of storytelling, but being responsive, and where possible recognizing strengths and using the narrative structure to ensure a comfortable conclusion to the session.

Table 1 Questions to guide the planning of a storytelling session How will your storytelling participant travel to the location of the storytelling? Do they require assistance with transport or a support worker? What is the physical set up of the room? Is it accessible? Is there a private space for story sharing? Is it quiet and free of distraction? How long have you planned the storytelling session? Does this match the needs/abilities of your participant? Does your participant use a communication device? Is an interpreter or close other needed to support your participant’s engagement in the storytelling? What medium of storytelling is most suitable for your participant, for example visual, written, or spoken? Have you scheduled the storytelling session at a time that is convenient for the storyteller?

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Adopting a Storytelling Approach

Positioning the storyteller and their lived experiences at the center of practice is central to adopting a storytelling approach. In the first instance, this perspective can be achieved by demonstrating verbal and visual cues that communicate genuine interest and curiosity in understanding the person and their lived experience. This includes asking questions at the beginning of the interview/session such as, “Can you tell me a little about you? Perhaps three words that best describe you?” Showing interest and investing in getting to know the person is critical to developing a trusting story sharing relationship. Furthermore, power is shifted from the researcher or healthcare professional to the storyteller, and in doing so, lived experience wisdom is recognized and valued. Indeed, in the context of disrupted narratives and experiences of loss of identity, this shift in power and focus on the lived experience can be transformative. In the authors’ storytelling research, participants shared reflections about feeling empowered through the experiences of being heard in relationship with the person listening to their story. When listening to stories of lived experience, the role of the facilitator or witness is to listen authentically. Asking questions such as, “Can you tell me more about that experience?” or “I am really interested in understanding what that was like for you” reinforces your interest in the story and encourages the storyteller to continue sharing their story. In the authors’ grounded theory study of narrative storytelling, interviews with facilitators provided valuable insights into the active and agile facilitation skills that best supported deeper and more meaningful story sharing. Facilitators likened this role to “navigating potholes,” emphasizing the importance of staying close to the story, yet weaving and wending in response to the story. Frequently, this also involved being prepared to attend to emotional work (D’Cruz et al. 2020). In a practice context, this process of facilitating and investment in listening to lived experience may be framed as an opportunity to better understand client preferences and values to guide goal planning and intervention. In both the practice and research contexts, it is essential that the facilitator adopts a strengths-based approach to facilitation, identifying positive experiences revealed through the story. In doing so, lived experiences are reframed through the narrative as a resource of knowledge and wisdom (Table 2). Table 2 Tips for listening to stories of lived experience Be curious about understanding the whole person Show interest in getting to know someone Ask questions: Can you tell me a little about you? Maybe three words that best describe you Create opportunities and a safe space for story sharing Use storytelling as an opportunity to build trust and rapport Ask more questions: Can you tell me more about this? What was that like for you? Take time to listen intentionally Listen for and recognize strengths in a story Always consider confidentiality and safety Be prepared for emotional work Privilege storytelling over other roles where possible

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Creating a Narrative Profile

It is important to not only create opportunities to hear the lived experiences of people with disability but to capture these experiences to inform practice/research findings. Creating a narrative profile or case study is a particularly valuable approach. In the context of the authors’ grounded theory research, narrative profiles were developed for each of the research participants capturing elements of their shared story and experiences, as well as observations or learnings taken from the interview experience. Writing participant profiles was an important part of recognizing and profiling the uniqueness of each participant. The profiles connected with the “insiderness” (Todres et al. 2009) of each participant, revealing preferences, values, and ways of being that were central to their stories. Narrative profiles are similar to the narratives produced from storytelling projects. For example, in the context of the authors’ research, the storytelling programs coproduced digital stories, written profiles, and participant-led videos. Each of these products captured the unique story of the storyteller, either from the firsthand perspective of the storyteller or from the more objective lens of the audience, the person who witnessed the story. It is important to recognize that while all stories or profiles must authentically reflect the experiences of the storyteller or research participant, there is flexibility as to whether the profile is captured in the first-or third-person format, depending on the situation, capacity, and preferences of the storyteller participants. In a practice context, it might be helpful to consider writing a profile of a client to locate intervention or goal plans within the holistic client context. At team meetings, staff might be encouraged to share the client profile as a way of ensuring a personcentered approach to team planning. Where possible, the client may be enabled to create or co-construct their own written profile to be shared with the rest of the team, or perhaps with family. This might also be useful in a hospital room, for example written on the whiteboard as way of personalizing the client to the staff. Similar to storytelling approaches, the profiles may use written, spoken, or visual approaches, such as drawings, photographs, or videos. The following are examples of narrative profiles written about two of the research participants in the authors’ study of narrative storytelling.

6.1

Narrative Profile Example of Research Participant: Kim

Kim chose to describe herself as “cheeky,” “strong,” and “loving.” She shared, “I’m not shy at all. And I have had to get through a lot and humor has been a way I have coped.” Kim has experienced many challenges in life. She sustained her stroke 3 years ago, is in her 30s, and is currently unable to live in her own apartment. She is living in temporary shared accommodation and misses her privacy. Kim is an artist and is energetic, passionate, and creative. Kim is also political. She is a passionate

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advocate for the rights of those with disabilities and continues to seek ways to have an impact, creating a more just and inclusive society.

6.2

Narrative Profile Example of Research Participant: Robert

Robert is a father in his 60s and lives in a nursing home. Robert sustained a TBI from a motorbike accident 5 years ago. He loved riding his motorbike. Robert chose the following words to describe himself: “pretty easy going,” “adventurous,” and “a curious person.” When discussing his choice of “curious” he said, “Always looking over the fence, sort or, what can I do now?”. Robert has lived a full and adventurous life, one that contrasts to his current life in the nursing home. Robert describes the nursing home as “Doomsday palace you go in one door and out the other in a box.” He feels incarcerated in the nursing home and hopes one day to move away. He shared, “It’s the wrong place for me. . .because my brain still works. . . and I know what I want.” Currently he spends his time reading books and doing art.

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Co-constructed Approaches to Storytelling Engagement

Narrative storytelling is inherently flexible and inclusive, with numerous opportunities for co-constructed engagement. In the first instance, the narrative or temporal structure scaffolds the telling and sharing of the story. When coupled with the familiarity of someone’s own lived experience, narrative storytelling is an accessible form of engagement for all people across the lifespan, inclusive of varied abilities. Of particular relevance when working with people with cognitive or communication impairments, storytelling utilizes metaphor which connects at an emotional level facilitating meaningful and efficient processing in the brain and memory retrieval (Tamplin et al. 2015; Ylvisaker and Feeney 2000; Ylvisaker et al. 2008). The use of metaphor can be expanded with use of photographs, drawings, music, or song lyrics to elicit story sharing (Tamplin et al. 2015). Storytelling engagement can also be graded over a number of sessions with opportunities for repeated reading and sharing of stories reinforcing reflective learning. For people with communication impairments or reduced concentration/attention, storytelling can be scaffolded using a combination of approaches such as emailing questions and use of social media posts and other forms of communication such as letters or blog posts. In the context of the authors’ grounded theory study of storytelling, five of the six storyteller participants experienced significant communication impairments: two used speechgenerating devices in the interviews and three with severe dysarthria communicated independently using personal communication strategies. Each of the participants had injury-related cognitive changes. To accommodate for varying communication abilities, at least two to three interviews were conducted with each participant, questions were emailed in advance (up to four questions maximum per email) and emailed

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answers were elaborated on in the face-to-face interviews, social media posts were shared where appropriate, and rest breaks were integrated into the interview structure. In the authors’ scoping literature review of personal narrative approaches to storytelling with adults with TBI, co-constructed facilitation strategies were evident across all the retrieved papers. In the context of song writing, examples of graded participation included use of word substitution, adding new verses to existing songs or writing songs by selecting lyrics from other songs, described as “song collage” (Baker et al. 2005a, b, c; Glassman 1991; Tamplin 2006). In the context of spoken approaches to sharing stories of lived experience, Hogan (1999) demonstrated use of a co-authoring process that involved the storyteller firstly talking into an audio recorder, the facilitator listening to the recorded story and then reading back their understanding of the story to the storyteller. Through this co-constructed process, the storyteller with significant cognitive impairment was enabled to share his story in a way that was meaningful to both him and others. Other co-constructed approaches included the visual medium of photography (Lorenz 2011) and the use of peer mentors to facilitate engagement (Fraas 2015; Fraas and Calvert 2009; Lorenz 2010). In an updated literature search (D’Cruz 2020), there was evidence of increasing use of co-constructed visual approaches such as film (Bohanna et al. 2019; Gauld et al. 2018; and power point slides (Strong et al. 2018). While not immediately recognized as a co-constructed approach to engagement, building a strong therapeutic relationship was identified in each of the retrieved studies, as well as in the authors’ research, as an important step in co-constructed engagement. As outlined earlier in this chapter, creating a safe and comfortable space is essential to the process of storytelling. Furthermore, in the context of working with people with cognitive and communication impairment, or other vulnerabilities, establishing a trusting relationship is crucial to co-constructed engagement. Co-construction implies a process of working together collaboratively in a working partnership, requiring cooperation and coordination. Investing time in creating a human connection provides the framework for a trusting and effective relationship in which co-construction thrives. Without this relationship, co-construction approaches will not reach their potential, and people are likely to experience barriers to engagement, and possible disengagement from the storytelling experience. At the worst end of this spectrum, people may find storytelling to be a dehumanizing experience rather than a transformative inclusive experience.

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Revisiting Stories Together

Creating opportunities for people to revisit their stories is an important part of the storytelling process. As revealed in the authors’ research into the experience of narrative storytelling, as well as a scoping review of the literature, the act of revisiting stories was a very meaningful experience, uncovering much potential for reflective self-learning.

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While the participants in the grounded theory study did not regularly revisit their produced stories (digital stories or written profiles), we revisited their stories together as part of the research process. From the perspective of the interviewer (the first author), revisiting the stories helped her to better understand the lived experiences of the research participants, and perhaps more importantly, the experience created a shared connection of a moment in time. For the storytellers, she observed this to be an emotional experience. While one of the participants commented that she was not overly sentimental and, therefore, did not find the experience particularly impactful, the others connected with their story and themselves as the central character in their story. It was evident that this opportunity to revisit their story prompted personal reflections about identity, occupational engagement, and goal attainment. The narrative or temporal structure provided a scaffold for this personal reflection. For example, one participant noted that in his video story he had talked about plans to return to a particular hobby; however, 12 months later this goal was not achieved. Upon listening to his story, he reflected about the reasons for this and considered future steps to be taken. In the context of the participant-led video research, In the context of the participantled video research, the produced stories were revisited in the research interviews. Unlike the participants in the grounded theory study, the participants of the PLV study frequently watched their videos when training new support workers. However, similar to the other study, they also enjoyed watching their story, commenting about being a “movie star,” and giving nods of approval when their support preferences were communicated in their video. Close others/support workers found viewing the videos very impactful, commenting that the videos captured the “essence” of the storyteller, recognizing strengths, capacity, and a holistic perspective of the person, not just the disability. As shared by one close other, “It wasn’t just this video about, you know, this is what you do or that. I saw him in it, and him sitting there. . . . I like the way that there was that, like I said, humanness captured about him. His personality shone through. Yeah, I liked that. . . . It’s like you’re meeting him” (Douglas and D’Cruz 2018, p. 2). The importance of revisiting stories was also reflected in the findings of the authors’scoping literature review of storytelling approaches to brain injury rehabilitation. Revisiting stories was best enabled in studies that included prolonged engagement in storytelling, such as writing poetry or songs. Across all of the studies, it was found that participants experienced a stronger sense of self and positive identity through the opportunity to revisit their stories and to reflect upon their personal experiences. Central to this experience was prompting reflection of experiences of success or strengths, reinforcing the reconstruction of a positive sense of self. This included opportunities for storytellers to update stories in line with recovery, goal attainment, and life changes.

9

Sharing Stories for Greater Impact

Sharing personal stories of lived experience is fundamentally an occupational experience. The participants in the grounded theory study of narrative storytelling were motivated to share their story to help others. While the advocacy context of this

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study emphasized the occupational component, the theme of “helping others” was also evident in other studies 'retrieved in the authors’ scoping literature review review of personal narrative approaches in brain injury rehabilitation. Framing storytelling as sharing personal lived experience ensures that storytelling is inherently relevant and meaningful to the storyteller. Furthermore, in the context of storytelling opportunities for people with lived experience of disability, by listening to these stories, Furthermore, in the context of storytelling opportunities for people with lived experience of disability, by listening to these stories, the wisdom of lived experience of disability is valued, thereby reinforcing the meaningfulness of the experience for the storyteller. While this process in itself represents a significant occupational opportunity, especially for people living with disability who may experience reduced occupational opportunities, sharing these stories more widely within the community is the ideal. Research shows that by finding an audience for stories of lived experience of disability, the impact for the storyteller is greatly enhanced. Most significantly, peoples’ perceptions of their disability and associated experiences of loss and impairment may begin to shift to a more positive, strengths-based viewpoint, framing their lived experiences as wisdom to be shared. Indeed, wisdom that is the domain of the person with the disability, and not the researcher or the health professional. For example, in the context of the authors’ grounded theory study of storytelling, the storytellers shared their experiences of living in a nursing home and the experience of moving out of a nursing home to more independent living in the community. These stories were then shared, contributing their voice of lived experience to the advocacy campaign to keep young people with disabilities out of nursing homes. The issue was deeply personal for the storytellers, therefore, the opportunity to share their story to help others was profoundly impactful and empowering. Their engagement with the facilitators of the storytelling and the advocacy organization was founded on a reciprocal exchange of knowledge. Finding an audience for shared stories also builds connections and opportunities for not just meaningful occupational engagement, but productive occupational engagement. In the context of living with ABI, the importance of contributing to the lives of others is gaining more attention, for example in volunteer roles and advocacy (Beadle et al. 2018). In the articles retrieved in the scoping literature review of personal narrative approaches to brain injury rehabilitation, storytelling opportunities embedded with occupational purpose were found to be more affirming for the storytellers. While only 5 of the 12 retrieved studies included opportunities for purposeful sharing of stories, an updated search conducted in late 2019 showed an increasing trend for these opportunities (D’Cruz 2020). Such opportunities included writing and publishing books, guest lectures in the community, contributing to newsletters, conference presentations, sharing songs written, and screening of films created through storytelling (Bohanna et al. 2019; Bradt et al. 2019; Fraas 2015; Gauld et al. 2018; Glassman 1991; Hogan 1999; Lorenz 2010; Strong et al. 2018; Vaudreuil et al. 2019). These opportunities enabled a sense of occupational purpose through story sharing as well as an opportunity to connect with and contribute to the community. In the authors’ grounded theory study, this sense of connecting and contributing was represented in the model of storytelling produced from the findings of the research. Storytellers

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valued the experience of connecting with others, experiencing a sense of belonging and agency, for many countering a long-standing sense of disconnection from community experienced following their brain injury. In the context of the participant-led video project, the stories of the participants were not developed to contribute to the lives of others, but to advocate for their rights in building productive and respectful working relationships with their support team. The findings of this study reinforced the success of narrative storytelling to achieve this aim, enabling people with disability to have a voice and take more control in directing their lives. Indeed, the findings indicated that participant-led video stories are a successful and inclusive approach to enabling people with cognitive and communication impairments to have choice and control, set their own goals, and direct their supports.

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Conclusion and Future Directions

Sharing stories of lived experience presents an opportunity for meaningful occupational engagement. This chapter has provided an overview of research evidence, and practical examples drawn from the authors’ research to illustrate the accessibility and value of narrative storytelling. In particular, drawing upon the authors’ knowledge of narrative storytelling with adults with brain injury related cognitive and communication impairments to explore the transformative potential of storytelling. It is hoped that by reading this chapter, readers are both motivated to consider narrative approaches to engagement and better positioned to use these approaches in research and practice. Be curious about the lived experiences of clients and research participants, honor their experiences by listening to their stories, and where possible, find opportunities for them to share their stories with others. Building upon this knowledge and thinking to the future, narrative storytelling is well positioned to meet the demands of an evolving, more human-centered healthcare environment. With a shift to more humanized healthcare, service users such as clients and research participants or co-designers, will be better informed of their rights, entering into partnerships with expectations of collaboration, choice, control, and autonomy (Terry and Kayes 2019). Similarly, funding agencies and ethical boards will increasingly demand “lived experience” engagement across the stages of research design, implementation, and evaluation. Storytelling is an accessible and effective human-centered approach to engagement suited to this changing context. Furthermore, as digital literacy and accessibility evolves, so do opportunities for engagement in socially relevant storytelling such as podcasts, social media posts, and digital stories. Digital storytelling, similar to participatory research, is a well-established storytelling method with foundations in advocacy and empowerment, often with marginalized communities (De Vecchi et al. 2016; Gubrium et al. 2014). While digital technology presents new challenges, such as privacy and cyber safety, and potential ethical concerns related to ownership of stories (Gubrium et al. 2014), there are numerous opportunities for increasing the advocacy impact and agency experienced through digital storytelling. Storytelling has perhaps never been better positioned as an inclusive, creative, and accessible tool to celebrate lived experience wisdom.

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Photo Elicitation and Drawing Methods in Research with People with Physical Disabilities

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Marginalized Voices for People with Disabilities in Vietnam: An Nguyen’s Story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 People with Disabilities and Sexual and Reproductive Issue in Vietnam . . . . . . . . . . . . . . . . . 4 The Photo Elicitation and Drawing Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Photo Elicitation Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Drawing Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Research on Sexual and Reproductive Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Photo Elicitation Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Drawing Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 What People with Physical Disabilities Used the Photo Elicitation for . . . . . . . . . . . . . . . . . . . 6.1 Perceptions of Sexuality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Types of Sex . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Satisfaction with Sexual Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.4 Problem Solving Sexual Position . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 Accessibility in Hospitals and Experiences with Health Care Providers . . . . . . . . . . . 7 What People with Physical Disabilities Used the Drawing for . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1 Perceptions of Sexuality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2 Satisfaction with Sexual Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3 Sexual Position and Other Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.4 Accessibility in Hospitals and Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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A. Nguyen (*) School of Social and Political Science, Monash University, Clayton, VIC, Australia P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_60

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Abstract

Researching people with disabilities and a sensitive topic can be a great challenge for any researcher. An Nguyen, the first author, lives with a physical disability. She is also a social researcher. She has been researching this issue for more than a decade. She found it very difficult to collect data from this group. For her Master by Research under the supervision of the second author, it was decided to apply the photo elicitation and drawing methods to collect the data. These methods provide a strong tool supporting the data collection process to be more meaningful to the participants. They became an active participant whose lived experience can be narrated visually and verbally. This chapter starts with An Nguyen’s story as a marginalized voice from people with disabilities in Vietnam. The literature of photo elicitation and drawing methods is then provided. The description of people with disabilities in Vietnam and study participants is summarized in the next section. Some examples of what people with disabilities in this research used photo and drawing are provided. The chapter is concluded with the implication for further research in the future. Keywords

Photo elicitation method · Drawing method · People with physical disabilities · Sexual health · Reproductive health · Vietnam

1

Introduction

This chapter is based on An Nguyen’s (the first author) Master by Research thesis focusing on sexual and reproductive health among people with physical disabilities in Vietnam. Individuals with disabilities start their lives with many challenges. Significantly, they are socially excluded in society. Hence, they generally find it difficult to integrate into society than people without disabilities. People with disabilities more often have less education and are unemployed than those without a disability. They also have fewer opportunities for sexual and reproductive rights (Nguyen 2009, 2013; Nguyen et al. 2016). Parker and Yau (2011, p. 1) contend that sexual and reproductive health is “an integral component and fundamental right of every individual”; yet people with disabilities can face considerable difficulty maintaining their reproductive health or satisfying their sexual needs. Individuals with physical disabilities are also seen as unattractive, asexual, or lacking sexual ability (Becker et al. 1997; Bremer et al. 2010; Li and Yau 2006; Nguyen et al. 2016; Nosek et al. 1995, 1997; Richards et al. 1997). Other socially excluded issues experienced by individuals with disabilities include inaccessible environment in health care services, insensitive health care workers, and lack of support from family members. In Vietnam, sexual and reproductive health issues are just one of the many challenges of people with physical disabilities. Researching in this topic can be a challenge for any researcher, because people with disabilities are vulnerable people

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and this topic is extremely sensitive (Nguyen et al. 2017). Asking questions in a sensitive topic and research involving people with disabilities requires careful handling (Liamputtong 2007, 2020). In this chapter, the use of photograph and drawing methods on collecting data with people with disabilities on sexual and reproductive health issues is discussed. The methods allow the research participant to become an active participant whose lived experiences can be narrated not only verbally but also visually.

2

The Marginalized Voices for People with Disabilities in Vietnam: An Nguyen’s Story

This research began with An Nguyen’s lived experiences as a person with a physical disability living with her family in a village in Vietnam. As a little girl, she did not see herself as an individual with a disability. However, she was aware of a woman with a noticeable physical disability in her village. The woman, named Hoa, lived alone close to An’s primary school, so An could observe Hoa and her life every time An went to school. An became aware that Hoa never had any male visitors. However, one day An realized that Hoa was pregnant and that other people in An’s village were trying to isolate Hoa and were talking very negatively about Hoa. After Hoa’s son was born, Hoa and her baby suddenly left the village one night. No one knew where they had gone. But An asked herself “Why did the people in my village isolate her?” An could not answer this question at the time, nor did An feel comfortable to ask anyone, but the question stayed in her mind. As An grew into a teenager, she found that she did not have many friends. Most of her classmates avoided her and even bullied her over the next few years. It was during this time that she came to realize that she was “different” from her friends and she recognized that she was a person with a disability. With this realization, she immediately thought back to Hoa with the disability who had lived in the village when An was younger. An started to see that Hoa’s life might be An’s future and with the continued bullying at school, many times she considered suicide as a solution. Fortunately, her family encouraged her to continue her studies and leave the village with the hope that education could change her fate. When An left her village, she moved to a place where she could hide herself. Her chance to study at a university meant she could live in Ho Chi Minh City. She did well in her studies, but she kept questioning why both Hoa in the village and herself had experienced discrimination. At that time, she came to believe that the stigma that challenged her also challenged other people with disabilities. This belief prompted her first research study in 2009, which was her undergraduate honors thesis titled “Perceptions about love, marriage, and family of people with disabilities in Ho Chi Minh City, Vietnam.” From this research, she discovered that many people with disabilities found it very difficult to have intimate relationships because of the stigma they faced. However, from this first research study, she also built a large network of people with disabilities and those that supported them. An made friends who also had

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disabilities, and these friends continue to outnumber her friends without a disability. From her frequent conversations with this network, she realized that although people with disabilities faced discrimination, they never stopped wanting an intimate relationship for themselves. Their wishes motivated her to do more research on people with disabilities and encouraged her to search for more information about people in Vietnam who are living with disabilities. Her second research study on sexual problems of people with disabilities in Ho Chi Minh City, Vietnam, was completed in 2013 for her Masters of Sociology degree. This research revealed little difference in sexual behavior among people with three different types of disabilities (hearing impairment, visual impairment, and mobility impairment) when compared with nondisabled people. The findings from this study reinforced the importance of understanding the sexual needs of people with disabilities to her. The findings highlighted the prejudices that challenge people with disabilities, particularly beliefs such as people with disabilities are not interested in sex and do not have sexual needs. In that study, An used a sexual rights approach and found that social stereotyping was a crucial factor in creating difficulties for minority groups to find love and marriage. “Unwritten rules” such as “to love is to get married” and “to marry is to give birth” were significant barriers. Other studies have also found that many people with disabilities fear that they will be a burden to others after they marry because they may be unable to take care of their spouse, their children, or their home (Đỗ et al. 2011; Nguyen 2009). Her research, both formal and informal, has revealed that it is very difficult for people with disabilities to integrate into Vietnamese society as successfully as others because of the stigma they face. Vietnamese people commonly believe that people with disabilities should not get married, cannot earn money, and cannot take care of themselves. In particular, most Vietnamese people believe that women with a disability cannot have children (Đỗ et al. 2011; Khuất et al. 2012; Nguyen 2009, 2013). These beliefs lead to parental decisions to not allow their children with disabilities to get married. It also means that people with disabilities do not have access to reliable information about sexual and reproductive health which leads them to often face additional burdens about their sex life and reproductive health care if they do get married (Nguyen 2013). In her first Master’s research, An found that divorce among people with different types of disabilities was often the result of unsatisfying sex life. As that study involved other types of disabilities, she found herself asking, “What was the experience of people with physical disabilities? How were their sexual and reproductive health affected by their disabilities?” These questions directly affected her and prompted the research study explored in her second Master (by Research), on the sexual and reproductive health of people living with physical disabilities in Ho Chi Minh City, Vietnam. From her working experiences with people with disabilities for many years, An found that people with disabilities are shy to share their stories. With the prompt from her principal supervisor (the second author), the authors decided to apply photo elicitation and drawing methods to collect data for this research.

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People with Disabilities and Sexual and Reproductive Issue in Vietnam

In 1986, at the threshold of Doi Moi, Vietnam was one of the poorest countries in the world. In order to meet with the food demand of the 60 million population, Vietnam needed to produce over 400,000 tons of food each year. However, in the next 20 years, the urbanization and globalization of Vietnam have brought economic growth steadily. Between 1992 and 2002, the country’s poverty rate fell from 58% to 28.8%. The fundamental economic and political changes brought some improvement in social relationships and lifestyles (Khuất et al. 2012). The quality of life of many Vietnamese people with disabilities has improved following changes in social welfare. There have been efforts to include people with disabilities in education and to integrate them into the community and the workforce (Khuất et al. 2012). Unfortunately, there are no specific data collected regularly about people with disabilities in Vietnam. The most recent statistics come from a report of the 2009 Census; that report revealed that there were approximately 6.5 million people with disabilities in Vietnam, comprising almost 10% of the total population (9.5%) (United Nations Population Fund 2011). The 2010 annual report of the World Health Organization (WHO) suggested that there were approximately 13 million people with disabilities in Vietnam, aged 5 years or older, which is 15.3% of the total population; however, this figure includes those who are deaf, blind, and physically immobile or disfigured (WHO 2010). There are also limited data available on the number of people with disabilities in Ho Chi Minh City. A 2004 survey estimated that 37,680 people with all types of disabilities, both permanent and temporary residents from other provinces, live in the Ho Chi Minh City (Nguyen 2013), which is far less than the nearly one in ten reported in the 2009 Census. The lack of reliable information about people with disabilities, including those with physical disabilities, is indicative of the low priority given to this group despite the Census data showing that up to one in ten Vietnamese people have some form of disabilities. In late 2000, the Vietnamese Government did commit to implementing a new National Reproductive Health Care Strategy, which included many elements of the Action Program from the International Conference on Population and Development (1994). The Government focused on improving the sexual and reproductive health of adolescents through education, counseling, and health care services (United Nations Population Fund 2007). The crucial target of this strategy was to improve the sexual knowledge of women and men so that they were able to fulfill their reproductive rights and responsibilities. These included the practice of safe sex and the promotion of equality and mutual respect in all sexual and reproductive health matters (Nguyen 2013). However, the sexual and reproductive health needs of people with disabilities are still underestimated and not well served. This is because sexual issues in Vietnam remain taboo even among researchers and policy-makers responsible for improvements in this area (Khuất et al. 2012). Sexual research in Vietnam has largely focused on problems related to sexually transmitted diseases, particularly HIV/AIDS, to prevent transmission of these diseases (United Nations Population Fund 2012).

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The silence around sexual issues and disability is most evident in the lack of reliable and accessible information. The lack of such information reinforces misconceptions around sexuality and threatens the longer-term success of any development in policy and programs in this area. Poor sexual and reproductive health knowledge is also possibly the main reason preventing people with disabilities from establishing families although it is compounded by common views that people with disabilities are asexual and are without sexual and reproductive health needs (Nguyen 2009).

4

The Photo Elicitation and Drawing Methods

Art-based research has been adopted as an important approach in qualitative research. Many researchers in social sciences have their great interest on this approach for their data collection (Coemans et al. 2015; Guillemin and Westall 2008; Joseph et al. 2019; Kronk et al. 2015; Nguyen et al. 2019a, b). Research focus on vulnerable population such as refugees (Joseph et al. 2019), indigenous students (Minthorn and Marsh 2016), children (Ganesh 2011; Pyle 2013), and so on has relied on these methods. We have not found any research which applied both the photo elicitation and drawing methods in research relating to people with disabilities in Vietnam.

4.1

Photo Elicitation Method

The photo elicitation method was first mentioned by John Collier (1957) in a paper entitled “Photography in Anthropology: a report on two experiments.” Collier described this method as an interviewing process. During the interviewing with photographs, “the potential range of data enlarges beyond that contained in the photographs themselves becoming communication bridges between strangers and pathway into unfamiliar, unforeseen environments and subjects” (Collier and Collier 1986, p. 99). Social science researchers have used this method in their data collection. The photos that have been adopted in the research could involve the use of taken pictures and/or selected by the researcher (Lapenta 2011). The contents of the photos would be appropriate with the study themes and subjects (Lapenta 2011). To use this method, the researcher asks the question of the photographs, and the interviewees pick the photos which meet their realities as their answers (Collier and Collier 1986). Once the participants select the pictures, they are asked to share the meaning of the chosen picture. Their explanations would then reflect to the research participants (Harper 2002).

4.2

Drawing Method

Visual art-based research methods have been used over the last decades among social sciences, cultural studies, and health care research. They include video, film, material artifacts, electronic visual media, and drawing (Guillemin and Westall 2008). The use of drawing method has been employed in the field of education,

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health, and psychology (Guillemin and Westall 2008). The drawing method was first mentioned by Darwin (1877) in “A biographical sketch of an infant” published in Mind. In this report, he represented his interest in the observation of child growth. He observed his son from birth and examined by drawing (Ganesh 2011). Overtime, researchers adopted drawings in their studies and so-called children’s artwork (Cherny et al. 2006; Ganesh 2011). In the 1990s, researchers started applying this method on adults to express study participants thinking/feelings in a variety of topics (Ganesh 2011). In health research, the primary use of the drawing method was in Anthropology. For instance, Martin (1994) applied drawing method to recognize people’s understanding of immune system. Victoria and Knauth (2001) examined the images of reproductive health between male and female participants in Brazil. To produce a drawing, the researcher asks the participants to draw a picture relating to the research topic. They are then asked to describe their drawings. Drawings allow participants to express their meanings and feelings which can be limited with a verbal expression (Guillemin and Westall 2008; Joseph et al. 2019).

5

Research on Sexual and Reproductive Health

As a research topic, sexuality raises challenges in any country in the world but in some countries, sexuality is considered a taboo topic not to be discussed within the family or public. In Vietnam, sexuality is “easy to joke about, but hard to talk about” (Khuất et al. 2012, p. 12) and such difficulties are exacerbated when the people involved have disabilities. As a Vietnamese person with a physical disability, An Nguyen understands that people with disabilities are confronted by many challenges in life and how they may react if asked questions about sensitive topics. When a study population is vulnerable, qualitative approaches can be especially appropriate and useful (Liamputtong 2007). The qualitative inquiry was decided to be adopted in this study. The study was informed by a feminist methodology that underpins the understanding of the challenges faced by people with disabilities when considering sexuality. The feminist theory comprises diverse approaches but common to all is the recognition that gender can have an impact on how people perceive and experience things in their everyday life (Ramazanoglu and Holland 2002). Studies of sexuality have revealed that sexuality researchers use feminist theory to understand how gender affects the way people gain knowledge about sexual and reproductive health (Đỗ et al. 2011; Khuất et al. 2012; Nguyễn and Liamputtong 2007; Thi Tu An Nguyen 2013). Feminist approaches also consider how individuals understand social reality, how they make sense of their experiences, how power influences the production of knowledge, and why gender and sexuality have more meanings to some than others (Grasswick 2018). Concerning research design, a feminist methodology was applied to help determine the sample. As men and women have different ways of gaining sexual and reproductive health knowledge, it was important for us to choose a sample that included similar numbers of men and women. This seemed particularly important when the literature found that the voices

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of men with physical disabilities are largely absent in terms of their experiences of sexual and reproductive health (Khuất et al. 2012). To address the aim(s) of this study, the study method faced two significant challenges: the sensitivity of sexuality as a research and the vulnerability of people with physical disabilities. Thus, an in-depth interviewing method was adopted for collecting data, and this was facilitated by the drawing and photo elicitation methods. The participants included people living with physical disabilities in Ho Chi Minh City Vietnam, both males and females, aged 18 years or older, who were either married or had been (and were now divorced or separated). The Vietnamese Marriage and Family Law allows people to start having sex legally from the age of 18 years. As we wanted to interview people experienced with sexual and reproductive health, single people were excluded from this study. During the in-depth interviews, participants were asked about their social situation including their age, career, education, religion, current income, number of children, the year they married, and divorced/separated, if applicable. They were also asked about the reasons for their disabilities. After these, they were asked about their reproductive health issues and then about their sexual health issues. Questions covered their knowledge, difficulties, and solutions on these topics. All the interviews were done by the first author.

5.1

Photo Elicitation Method

We chose 20 pictures that were cut from magazines or downloaded from the Internet and portrayed images that included people and natural environments. The images were chosen to be suitable to the local context, which is Asian people and Asian environments. The photographic pictures were offered to participants when they found it difficult to express their feelings in spoken and written words or through drawing. We put all the pictures on the table and invited the participants to choose those pictures that best represented their feelings or response to these questions. The participants could select any number of images that they wanted. After the participants had made their selection, we asked them to order their chosen pictures from the most to least likely to represent their feelings and views. Finally, we asked them to elaborate on the photographs chosen and the reasons for their decisions.

5.2

Drawing Method

The drawing method was planned to be used in the interviews if participants were finding it difficult to express their emotions. If someone was unable to speak or write, we asked them to try drawing on a white paper and use colored pencils that we provided. We suggested that they draw the images that appeared in their minds that represented their feelings and opinions. After they finished their drawings, we asked the participants to describe the image they had drawn.

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What People with Physical Disabilities Used the Photo Elicitation for

People with disabilities picked photos for the themes regarding the perception of sexuality, the importance of sexuality in a married life, types of sex, a satisfaction with sexual life, problem solving in sexual position, accessibility to the hospitals, and health care providers.

6.1

Perceptions of Sexuality

When the participants were asked to define sexuality, they found it difficult to talk about sexuality. It was a western concept that ambiguous to them. But they were able to choose a picture to express their thinking. For example, Dan, who was a male with a physical disability, could not verbally say about the definition of sexuality. He picked a picture (Fig. 1) and explained it later. It is sexuality. They are lying down on a bed which means they are having sex (Nguyen et al. 2019a).

Fig. 1 Lying down on the bed

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Fig. 2 A couple of male with disability and female without disability

Sexuality was seen as part of married life that went together with happiness. Some participants explained having sex as one of the reasons they got married. Sexuality could carry happiness in their married life. For Mai, a female with physical disability, found it very difficult to explain the importance of sexuality in married life, she chose a photo to express her thinking (Fig. 2). For me, sexuality goes together with happiness. Because when my parents passed away, I only had my husband. He and I built our happiness together. That was why I chose this photo. I think it is very meaningful. Sexuality and love have to go together.

Hung, a male participant, chose another photo to express his thinking about the meaning of sexuality in married life. He said sexuality also meant procreation (Fig. 3). I chose this photo because sexuality means procreation and we would not be happy if there was no sex in life [Hung, 51 years old, married, male]

6.2

Types of Sex

When asked about sexual positions and sexual patterns, most people with disabilities chose a photo to answer instead of answering verbally. Figure 1 (presented above) was selected by most participants to show their favored sexual position. People with physical

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Fig. 3 A happy family

disabilities find movements difficult so lying down on a bed was a common sexual position used by participants. Here are examples of their explanations about the photo. I only use this position because I am a person with a disability [Hung, 51 years old, married, male] Lying down on the bed, because I do not have any ability to stand up [Van, 45 years old, married, male] It is a normal sexual position. It is also because my wife and I are amputees [Tuan, 46 years old, married, male]

For people with disabilities who have a nondisabled partner, they preferred choosing the Safety First photograph (Fig. 4). They meant that they use diverse sexual positions. [. . .] I think this photo shows many sexual positions. It is very real [. . .] I use some sexual positions that are similar to this photo, but not all (Nguyen et al. 2019a).

6.3

Satisfaction with Sexual Life

Most participants were happy with their married life. They shared their stories easily. However, other participants who had problems with particular sexual

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Fig. 4 Safety First

positions, they were unsatisfied with their sexual life. They were hesitated to share their story verbally. Hence, they chose the Loneliness figure (Fig. 5) to express their feelings. My sexual needs are not satisfied. I am not able to use some of the sexual positions that non disabled people use, so I feel like my sex life is not good enough. There is no motivation for this. It is impossible because I cannot stand up (Nguyen et al. 2019a).

6.4

Problem-Solving Sexual Position

Most participants with sexual difficulty were embarrassed to talk verbally about this issue. When we asked how they solved this problem, they chose Fig. 4, presented above, as their solution. They also expressed their sexual desire via Fig. 4, as the figure showed a number of sexual positions. They wanted to try. Cuong, a male participant, explained why he picked this photo. As I said before, I have a problem using certain sexual positions. So when I saw this photo, I really liked it. I wish I could use some of the sexual positions in this photo [Cuong, 47 years old, married, male]

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Fig. 5 The loneliness

6.5

Accessibility in Hospitals and Experiences with Health Care Providers

Accessing health care facilities like hospitals presented many challenges to the participants in this study. Some chose a photo to express their feelings about the inaccessibility they encountered in public hospitals (Fig. 6). One participant explained: The only problem I faced was going up the stairs. It was not a serious problem, but it was very hard for me to go up. It is a big barrier for people with disabilities (Nguyen et al. 2019b)

Commonly, people with disabilities in this research felt that health care providers in public hospitals looked down on them. Providers had negative attitudes towards

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Fig. 6 Stair barriers

participants seeking reproductive health advice or care, both women and men, and some were perceived to be negative when a person with a disability went to see a doctor for any health reason. Hau, a woman with a disability, felt that public health care providers did not care about disabled patients. She then chose a photo to express more clearly her feelings of discrimination (Fig. 7). I was so angry but I was scared to complain. Although I was so angry about this, I chose not to speak out. This photo shows that everyone saw that I was a person with a disability, but they did not care. And I chose to keep silent and put up with their negative attitudes. I could not say anything because it was in public. I thought if I want to talk, who cares (Nguyen et al. 2019b)

7

What People with Physical Disabilities Used the Drawing for

People with disabilities used drawing to express their feeling in terms of the perception of sexuality, a satisfaction of sexual life, sexual position and other problems, and accessibility to the hospitals.

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Fig. 7 Negative attitudes

7.1

Perceptions of Sexuality

For many participants, sexuality was defined as sexual intercourse between a man and a woman. Hung, a man with a disability, drew a picture to express his thinking about sexuality (Picture 1).

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Picture 1 Sexuality definition expressed by Hung Generally, I did not know how to draw [laugh], but I meant when a man and a woman who were naked were lying down side by side, it was sexuality. [Hung, 51 years old, married, male]

When talking about sexuality, Hung was very embarrassed. His face blushed while discussing it.

7.2

Satisfaction with Sexual Life

The majority of participants reported feeling satisfied with their sex life; however, for many of these, their responses were quite subdued. Some drew pictures to express their feelings. One participant, Lan, drew a blossoming flower to express her feelings (Picture 2). I am very satisfied with my sex life. When I think about sex, I think immediately of orgasm [Lan, 41 years old, married, female]

Another participant, Dan, expressed satisfaction with his sex life and his married life. He drew a picture of his family that included himself, his wife, and his son (Picture 3). Yes, I am very satisfied with my life. My picture shows my family. I want to express my happiness [Dan, 32 years old, married, male]

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Picture 2 Satisfaction with sexual life

Another participant, Ly a widow, who was currently not having sex reported that she was satisfied with her sex life when her husband was alive (Picture 4). When he was alive, I was satisfied with my life. But not now (sad face) [. . .] [Ly, 48 years old, widow, female]

However, one participant, Hung, said his sexual needs were not being satisfied because he did not have a private space in which to have sex with his wife. He drew a picture to express his feelings (Picture 5). I love my children. But sometimes they annoy me. I lost my freedom because of them. I drew a brown cloud which means a dark cloud. I am unsatisfied. I question why I still do not have

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Picture 3 A happy family

a private space. Sometimes, children are a barrier for their parents (laugh) [Hung, 51 years old, married, male]

7.3

Sexual Position and Other Problems

One male participant, Van, drew a picture to express his difficulty in having sex. In his picture, he wished to stand up while having sex (Picture 6). This is my difficulty. I feel uncomfortable with my current sexual positions. I want to stand up when having sex but it is impossible. [Van, 45 years old, married, male]

7.4

Accessibility in Hospitals and Health Care

The difference in accessibility between public and private hospitals is significant. Private hospitals accommodate the needs of patients with disabilities very well, for a cost. People in this study were generally very satisfied when they saw doctors in private hospitals. In contrast, study participants found public hospitals to be much

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Picture 4 History family

less accessible for people with disabilities; this made them feel uncomfortable and created a barrier to accessing health care services. Stairs were the most common barrier for people with disabilities in public hospitals. Some participants, who were wheelchair users, had more trouble when

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Picture 5 Privacy issue Picture 6 Sexual positions problem

they went to public hospitals those using private hospitals. Some had to carry their wheelchair with them, others would borrow a wheelchair from the hospital, but still could not use the wheelchairs when they went there. They often had to go upstairs to see doctors and there were no elevators for them to use.

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One participant, Hung, drew a picture to further express his feelings about the inaccessibility of his public hospital. He was very angry while he was drawing because he felt that the hospital did not care about individuals with disabilities (Picture 7). I meant nothing to them. Actually, all I wanted was a ramp for wheelchair users. I did not want to be angry. If I am angry, it is not a good way to deal with problems. I meant nothing to

Picture 7 Inaccessible environment in a public hospital

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them. My voice was very low. I knew I could not ask for a big change. So I just suggested to them that they make a ramp. In this picture, a man is wearing splints. He is so angry at the stairs because he cannot go up the stairs with his splints. He wants to break the stairs (Nguyen et al. 2019b).

8

Conclusion and Future Directions

This study both confirmed the beliefs about some issues confronted by individuals living with physical disabilities and surprised us by others. People with physical disabilities have expressed negative experiences when using health care services at public hospitals. (Becker et al. 1997; Bremer et al. 2010; Li and Yau 2006; Nosek et al. 1995, 1997; Richards et al. 1997). Participants highlighted the problems they had with the environment in public hospitals. These environments were both physical, in the form of inaccessibility for people with disabilities, and attitudinal, specifically the negative attitudes of health care providers towards people with disabilities. It was concerning that reasons such as these caused some people with disabilities to avoid public health care services (Nguyen et al. 2019b). Methodologically, we only came to understand some of the assumptions we held by conducting this study. We assumed that it would be very difficult for us to interview people on a sensitive topic such as sexuality, especially as we were asking personal and specific questions. We were also worried that we would not have enough information for the study. However, almost all participants in this study surprised us by answering questions openly and sincerely. We believe that this was because they knew An Nguyen and knew her reputation from her previous work in developing useful activities for people with disabilities. They told the researchers that they shared their stories because they believed in An and believed that the research would contribute value to society. They saw that the findings from this study could help people with disabilities improve their quality of life. Their trust in An helped them to share their stories, which gave the researchers rich data for the study. In terms of the additional techniques used to elicit data, not many participants drew pictures. When we asked them to draw, they were shy and refused saying “I do not know how to draw” or “I cannot draw.” Those participants, who did draw pictures, found it an easy way to express their thoughts and feelings. Most participants liked choosing photos to express their ideas. However, of the 20 photos offered, some were never chosen by participants. Other photos were chosen many times, and some photos were picked a few times. The male participants found it easier to talk about sexual and reproductive health issues than the females and they often had more to say. This could be because male participants had more opportunities to access sexual and reproductive health sources than did females. Despite some difficulties, we were able to complete the study and gathered very good data. We feel that this research will provide a good understanding of sexual and reproductive health of people with physical disabilities in Ho Chi Minh City, Vietnam.

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Despite some limitations, the study gained a new understanding of the sexual and reproductive health experiences of people with physical disabilities and this was achieved with this study design. Many of the people with disabilities in this study had limited education and communication skills. They were also shy to discuss such an intimate topic in an interview, and this has resulted in miscommunications. We believe that the use of drawings and photo elicitation went some ways to overcome these barriers. Furthermore, this study missed the younger age group, those who are aged from 18 to 29 years old. While the eligibility criteria included 18+ years old, the ages of participants ranged from 30–51 years old. This means that the age range 18– 29 years was missing. This younger age group might have influenced the findings differently and further research may be needed to address this. Finally, we focused on physical disabilities, which means the results may not apply to other kinds of disabilities in Vietnam. While the needs of people with other kinds of disabilities are also important, limiting this study to people with physical disabilities was important in highlighting significant issues for this group. To conclude, this research contributes to a research journey of sexual and reproductive health. We hope that further research will be undertaken to help Vietnamese people with disabilities address the challenges with the discrimination they face and improve their lives. We are highly recommended that photo elicitation and drawing methods should be applied to other sensitive research topics with vulnerable groups. The methods allow the participants to become an active participant whose lived experiences can be narrated both verbally and visually.

References Becker, H., Stuifbergen, A., & Tinkle, M. (1997). Reproductive health care experiences of women with physical disabilities. Archives of Physical Medicine and Rehabilitation, 78(12), S26 S33. Bremer, K., Cockburn, L., & Ruth, A. (2010). 8. Reproductive health experiences among women with physical disabilities in the northwest region of Cameroon. International Journal of Gynecology & Obstetrics, 108, 211 213. https://doi.org/10.1016/j.ijgo.2009.10.008. Cherny, I. D., Seiwert, C. S., Dickey, T. M., & Flichtbeil, J. D. (2006). Children’s drawings: A Mirrior to their mind. Educational Psychology, 26(1), 127 142. Coemans, S., Wang, Q., Leysen, J., & Hannes, K. (2015). The use of arts based methods in community based research with vulnerable populations: Protocol for a scoping review. Inter national Journal of Educational Research, 71, 33 39. https://doi.org/10.1016/j.ijer.2015. 02.008. Collier, J. (1957). Photography in anthropology: A report on two experiments. American Anthro pologist, 59(5), 843 859. Collier, J., & Collier, M. (1986). Visual anthropology. Albuquerque: University New Mexico Press. Darwin, C. (1877). A biographical sketch of an infant. Mind, 2, 285 294. https://doi.org/10.5214/ ans.0972.7531.1017409. Đỗ, T. T. T., Nguyễn, H. H., Gammeltoft, T., & Wright, P. (2011). Chances to have love and sex from viewpoints of women with disabilities (Cơ hội để có tình yêu, tình dục từ góc nhìn của phụ nữ khuyết tật). Gender, Sexuality and Reproductive Health, 22, 1 32. Ganesh, T. G. (2011). Children produced drawings: An interpretive and analytic tool for researchers. In E. M. Margolis & L. Pauwels (Eds.), The SAGE handbook of visual research methods. Los Angeles: SAGE.

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Grasswick, H. (2018). Feminist social epistemology. Stanford Encyclopedia of Philosophy. USA. Retrieved from https://plato.stanford.edu/entries/feminist social epistemology/ Guillemin, M., & Westall, C. (2008). Gaining insight into women’s knowing of postnatal depres sion using drawings. In P. Liamputtong & J. Rumbold (Eds.), Knowing differently: Art based and collaboratative research methods (pp. 121 139). Nova Science. Harper, D. (2002). Talking about pictures: A case for photo elicitation. Visual Studies, 17(1), 13 26. https://doi.org/10.1080/14725860220137345. Joseph, J., Liamputtong, P., & Brodribb, W. (2019). Drawing method and infant feeding practices among refugee women. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences. Singapore: Springer Nature Singapore. Khuất, H. T., Lê, D. B., & Nguyễn, H. N. (2012). Sexuality in contemporary Vietnam: Easy to joke about but hard to talk about (2nd ed.). Hà Nội: NXB Lao Động. Kronk, R., Weideman, Y., Cunningham, L., & Resick, L. (2015). Capturing student transformation from a global service learning experience: The efficacy of photo elicitation as a qualitative research method. The Journal of Nursing Education, 54(9), S99 S102. https://doi.org/10.3928/ 01484834 20150814 18. Lapenta, F. (2011). Some theoretical and methodological views on photo elicitation. In E. M. Margolis & L. Pauwels (Eds.), The SAGE handbook of visual research methods. Los Angeles: SAGE. Li, C. M., & Yau, M. K. (2006). Sexual issues and concerns tales of Chinese women with spinal cord impairments. Sexuality and Disability, 24, 1 26. https://doi.org/10.1007/s11195 005 9000 6. Liamputtong, P. (2007). Researching the vulnerable: A guide to sensitive research methods. London/Thousand Oaks/New Dehli: Sage. Liamputtong, P. (2020). Qualitative research methods (5th ed.). Melbourne: Oxford University Press. Martin, E. (1994). Flexible bodies. Tracking immunity in American culture from the days of polio to the age of AIDS. Boston: Beacon Press. Minthorn, R. S., & Marsh, T. E. J. (2016). Centering indigenous college student voices and perspectives through photovoice and photo elicitation. Contemporary Educational Psychology, 47, 4 10. https://doi.org/10.1016/j.cedpsych.2016.04.010. Nguyen, T. T. A. (2009). Những vấn đề giới trong hôn nhân của người khuyết tật ở Thành phố Hồ Chí Minh hiện nay (Gender Issues of people with disabilities in Ho Chi Minh City, Vietnam). (Bachelor degree), Ho Chi Minh University of Social Sciences and Humanities Vietnamese National University, Vietnam. Nguyen, T. T. A. (2013). Những vấn đề về tình dục của người khuyết tật ở Thành phố Hồ Chí Minh hiện nay (Sexual Issues of people with disabilities in Ho Chi Minh City, Vietnam). (Master degree), Ho Chi Minh University of Social Sciences and Humanities Vietnamese National University, Vietnam. Nguyễn, N. H., & Liamputtong, P. (2007). Sex, love, and gender norms: Sexual life and experience of a group of young people in Ho Chi Minh City, Vietnam. Sexual Health, 4, 63 69. Nguyen, T. T. A., Liamputtong, P., & Monfries, M. (2016). Reproductive and sexual health of people with physical disabilities: A metasynthesis. Sexuality and Disability, 34, 3 26. https:// doi.org/10.1007/s11195 015 9425 5. Nguyen, T. T. A., Liamputtong, P., Horey, D., & Monfries, M. (2017). Knowledge of sexuality and reproductive health of people with physical disabilities in Vietnam. Sexuality and Disability, 16. https://doi.org/10.1007/s11195 017 9515 7. Nguyen, A., Horey, D., & Liamputtong, P. (2019a). Sexual experiences of people with physical disabilities in Vietnam. Sexuality and Disability, 37, 25 39. https://doi.org/10.1007/s11195 018 09557 0. Nguyen, A., Liamputtong, P., & Horey, D. (2019b). Reproductive health care experiences of people with physical disabilities in Vietnam. Sexuality and Disability, 37, 383 400. https://doi.org/10. 1007/s11195 019 09581 8.

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Photo Elicitation Method and Young Refugees’ Social Participation in Community

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Social Capital and Young People with Refugee Backgrounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Study and Photo Elicitation Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Connection and Friendship Diversity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Community Participation and Social Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Community Participation: Challenges . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Resilience and Young People with Refugee Backgrounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 What Do We Learn from Young People with Refugee Backgrounds? . . . . . . . . . . . . . . . . . . . . 9 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter discusses the use of the photo elicitation method to examine the social experiences of young people with refugee backgrounds in regional Australia. In the study on which this chapter is based, the authors explored the role of social capital and its impact on regional settlement experiences for young people with refugee backgrounds. Qualitative in-depth interviews and photo elicitation methods were conducted with 16 Congolese young people with refugee backgrounds living in an Australian regional town. Findings revealed that the participants relied on a variety of social capitals to help them integrate into their regional community. Community participation in the form of sport, music, and cultural activities were common methods to develop social capital. Importantly,

L. Joyce BreastScreen, Carlton South, VIC, Australia P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_61

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these young people exhibited a remarkable level of resilience and determination that assisted them to succeed in Australia. This chapter highlights that social capital, including bonding and bridging capital, is important for young people with refugee backgrounds whose social relationships are often diminished during the process of forced migration. The chapter identifies community participation as a potential method for restoring social capital for young people with refugee backgrounds, particularly in regional Australia where community participation is common. Keywords

Photo elicitation method · Congolese · Young refugees · Regional settlement · Social capital · Community participation

1

Introduction Photographic images have become one of the foremost means of representation and com munication in our contemporary societies. (Ndione and Remy 2018, p. 61)

In this chapter, the authors discuss the use of the photo elicitation method to examine the social experiences of young people with refugee backgrounds in regional Australia. In the study on which this chapter is based, the authors explored the role of social capital and its impact on regional resettlement experiences for young people. There has been a strong policy push to settle a proportion of Australia’s refugees in regional areas (Department of Immigration and Border Protection 2015; Refugee Council of Australia [RCOA] 2015; Piper 2017; Collins et al. 2019; Musoni 2019). Aware of the potential economic, social, and cultural contributions that refugees could make to Australia’s regional towns, the government has formally and informally encouraged the regional resettlement of refugees since 2004 (Hugo 2011). Regional Australia is now home to approximately 15% of Australia’s refugees (Hugo 2011; Feist et al. 2015; Refugee Health Network 2015; Piper 2017; Collins et al. 2019; Crouch et al. 2019; Musoni 2019). Regional resettlement of refugees is often seen as a “win-win” situation. The combination of low diversity, an aging population, and the exodus of young people to metropolitan areas has stifled the economic and social prosperity of Australia’s regional towns (Piper 2009, 2017). The settlement of refugees in regional Australia has the potential to reverse this trend by addressing job shortages, increasing diversity, and revitalizing country towns (Queensland Council of Social Services [QCOSS] 2014). It is also claimed that regional towns offer refugees unique opportunities that are not available to them in metropolitan areas (Hugo 2011; Piper 2017; Collins et al. 2019; Musoni 2019). However, numerous organizations have raised concerns that without sufficient planning, regional settlement policies can leave refugees disadvantaged (QCOSS 2014; Piper 2017; Collins et al. 2019; Musoni 2019).

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In response to this concern, several studies have investigated the impact of regional resettlement for refugees (Taylor and Stanovic 2005; Shepley 2007; McDonald-Wilmsen et al. 2009; AMES Australia [AMES] 2011, 2015; Piper 2017; Collins et al. 2019; Musoni 2019). These studies revealed that some regional communities have limited experience of living closely with other ethnic groups. Regional towns are often unable to meet the complex needs of refugees, such as opportunities for employment and other social needs, due to a lack of social support services and isolation (Shepley 2007; Johnston et al. 2009; McDonald-Wilmsen et al. 2009; QCOSS 2014; Collins et al. 2019; Musoni 2019). Young people make up over 70% of Australia’s refugee intake (Hugo 2011). The needs of young refugees are multifaceted and distinct from the needs of adult refugees (Coventry et al. 2002). While many studies have explored the various impacts of regional resettlement on the health and well-being of adult refugees (Taylor and Stanovic 2005; Shepley 2007; AMES 2011; Collins et al. 2019; Musoni 2019), little is known about the implications of regional resettlement on the health and well-being of young refugees.

2

Social Capital and Young People with Refugee Backgrounds

Social capital refers to the value within an individual’s set of relationships and networks of social support (Portes 1998; Putnam 2000). Strong social connections with friends, family, and the wider community are crucial in order to maximize the opportunities for recently arrived refugees (CMY) 2006; Doney et al. 2013; Bansel et al. 2016; Drolet and Moorthi 2018; Uzelac et al. 2018; Børsch et al. 2020). The Department of Immigration and Citizenship’s (DIAC 2011) study regarding the settlement outcomes of newly arrived refugees revealed that over half of their respondents felt well connected to the wider Australian community. These broad external connections are what Putnam (2000) refers to as bridging capital, and can contribute to a refugee’s sense of belonging (see also Hugo 2011; Doney et al. 2013; Fozdar and Hartley 2013; Bansel et al. 2016; Pittaway et al. 2016; Santoro and Wilkinson 2016; Drolet and Moorthi 2018; Uzelac et al. 2018; Børsch et al. 2020). AMES’ (2015) study in Victorian regional town Nhill highlighted the importance of bridging capital for Karen refugees from Burma (Myanmar). Bridging capital was a significant factor in the overwhelmingly positive response to the Karen population’s resettlement in Nhill (AMES 2015). The Karens’ involvement in the wider Nhill community through sport, social groups, and service organizations has seen the Nhill community embrace the Karen people, and in the words of Hindmarsh Shire Council’s CEO, “this has made Nhill a better place to live” (AMES 2015, p. 11). These studies (DIAC 2011; AMES 2015) highlight the importance of social capital for the health and well-being of refugees in regional areas. However, neither study was specifically tailored to the experiences of young refugees. Social capital is especially important for young refugees who arrive in a foreign country during a transitional stage in their lives, where the common pressures of

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adolescence are compounded by the additional stressors associated with their refugee experience (CMY 2006; Correa-velez et al. 2010; Wilkinson et al. 2017; Børsch et al. 2020). In their study, Brough et al. (2003) revealed that young refugees typically rely on social communication and participation as coping mechanisms for stress and anxiety. This included talking with friends and family, playing sport, and participating in community activities (see also Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Farello et al. 2019; Spaaij et al. 2019). Brough et al.’s (2003) study suggested that young refugees do not typically conceptualize their health in terms of illness. Rather, they are more likely to reflect on their health by their degree of social connection with friends, family, and their community. This highlights the importance of promoting social environments within public health approaches to young refugee health and well-being. Nathan et al.’s (2013) study in Australian primary schools revealed that fostering peer interaction can promote feelings of self-worth and happiness for children from migrant backgrounds. The young refugees in the Centre for Multicultural Youth’s (2006) study emphasized peer and social connectedness as a crucial element in forming a sense of belonging and well-being. These studies highlight the importance of social capital when promoting the health and well-being of young refugees. However, all three studies were conducted in urban centers and it is unclear whether the findings could be applied to young refugees in regional areas. Despite the increasing number of young refugees settling in regional areas and the importance of social capital among this group, there is a significant gap in the literature regarding this issue. Young refugees possess a unique form of resilience and resourcefulness that assist them to succeed in Australia (Koh et al. 2013; RCOA 2009). Coventry et al. (2002) showed that initial high rates of mental health illness among young refugees decline within 2 years after settling in Australia. Furthermore, 90% of young refugees commit to full-time study upon arrival in Australia, and 60% attain post-school qualifications, which is higher than the national average (Coventry et al. 2002; Hugo 2011). Not only do young refugees receive the majority of their education in Australia, but virtually their entire working lives are also spent in Australia (Hugo 2011). The significant contribution that young refugees could make to Australia’s economy and society is increasingly being acknowledged in the literature (Brough et al. 2003; Hugo 2011). Capitalizing on the strengths of young refugees and restoring their social capital is one way of maximizing their potential.

3

The Study and Photo Elicitation Method

The study on which this chapter is based adopted a qualitative approach, which is essential when an individual want to explore and understand people’s own experiences, attitudes, behavior, and interactions (Bryman 2016; Liamputtong 2020). The participants were 16 Congolese young people with refugee backgrounds living in an Australian regional town. Qualitative research methods gave a voice to participants of a study; it provided them with the opportunity to freely share their experiences. This approach is particularly important when working with a vulnerable population

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(such as young refugees); it gives voice to the marginalized (Liamputtong 2007, 2010, 2020). Additionally, qualitative research is essential for addressing research questions that have been little researched (Liamputtong 2020). We utilized two qualitative methods of data collection: in-depth interviews and photo elicitation. In-depth interviews were chosen for this study to give a voice to the participants (Serry and Liamputtong 2022). Due to their vulnerabilities and young age, participants were given a choice to take part in a group or individual interview. Eleven in-depth interviews were conducted in total, including eight individual interviews and three small group interviews with two to three participants in each. The interviews ranged from 40 min to 70 min, depending on the participants’ elaboration. The majority of the interviews took place at a university regional campus; however, some interviews took place in public spaces that were more convenient for the participants. Each interview consisted of questions relating to the participants’ perceptions of the local area where they live, their social networks, their acculturation experiences, and their level of participation in the community. In this study, the photo elicitation method was used in combination with the in-depth interviews. The photo elicitation method is based on “a simple idea of inserting a photograph into a research interview” (Harper 2002, p. 24). Photographs evoke information, feelings, and memories from individuals, and therefore broaden the scope of conventional interviewing methods (Harper 2002; Glaw et al. 2017; Boucher 2018). Explicitly selected photographs are used by the researcher to elicit ideas and thoughts from the research participant (Marsh et al. 2016, p. 43). The photo elicitation method has also been referred to as the “participant-driven photo elicitation” method (Feng 2019) and “photo-response interviews” (McLaughlan 2019). Originally, the photo elicitation method was adopted in sociology and anthropology. It has been increasingly used in research with vulnerable and marginalized populations and health research (Boucher 2018). Photo-elicitation is situated within the theory of personal construction, which posits that “individuals give meaning to their world on the basis of their vision of the contexts, events and situations they experience” (Ndione and Remy 2018, p. 63). Photo-elicitation creates a pyramidal exchange between the researched, the researcher, and the images. Accordingly, “the challenge for the researcher is to induce the participant to produce meaning, and the relationship between researcher and participant is transformed because it is built around the exchange, or even collaboration” (Ndione and Remy 2018, p. 63). Collier (1957, p. 12) suggests that a photograph functions as a “tin opener.” The use of images makes it possible to start a conversation and direct it in ways that could not have been done without them (Harper 2002; Ndione and Remy 2018). Additionally, the photo elicitation interview is a process that evokes more discussion and brings out a different type of knowledge during an interview (Harper 2002). This is because when individuals process visual images using words, their brain’s capacity is exercised at a higher level than processing verbal information (Harper 2002; Glaw et al. 2017). According to Harper (2002, p. 23), photo elicitation interviews can create interesting and deep conversations. Researchers who have adopted this method found that the elicited meanings are different from traditional interviewing methods

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(Collier and Collier 1986; Harper 1988, 2002; Radley and Taylor 2003; Bigante 2010; Glaw et al. 2017; Boucher 2018; Feng 2019). Thus, photo elicitation helps to lead both the researchers and participants toward common understandings of the investigated issues (Harper 2002; Boucher 2018). Harper (2002, p. 20) suggests that: Photo elicitation may overcome the difficulties posed by in depth interviewing because it is anchored in an image that is understood, at least in part, by both parties. If the interview has been successful, the understanding has increased through the interview process.

The photo elicitation method, as in other visual methods, also allows empowerment to occur among the research participants. The participants can select the photographs that make sense to their lived reality to be discussed and this permits them to guide the researcher in the interview (Harper 2002; Noland 2006). This gives them more power in the research interviews (Glaw et al. 2017; Boucher 2018). This empowerment is essential when working with vulnerable and marginalized young people (Liamputtong 2007, 2020). According to Feng (2019, p. 720), the method can generate “rich, unique and meaningful data that would be otherwise difficult to collect through conventional qualitative interviews.” In her research that examined how people interact with and manage their personal health information from their activity trackers (e.g., Fitbit, Apple Watch) and related health applications, she contends that the method “elicited explanation, rationalisation and reflection during the interviews” that “enriched and triangulated” core research findings of her study. How many images are used in a research project depends on the research topics and aims. There is no set of numbers that researchers must use. In her research, McLaughlan (2019, p. 254), seven photographs were used. Participants were shown the photographs and asked to talk freely about their responses to each photograph. In Muhamad et al.’s study (2019) on meanings of sexuality and feelings about having sexual dysfunction, they prepared 40 photographs that illustrated different perspectives, which were designed to be culturally acceptable. The photographs were free images found through an Internet search but were modified to make suitable for “Malay” culture. Each participant was asked to select two images to talk about the issue. In this study, 14 photos were used as stimuli for questioning in the interviews. Of these photos, four were taken by ourselves, four were photos sourced from the Internet, and six photos were obtained from the local area news website (see also Cretin et al. 2017; Mohammad et al. 2019) who selected their photographs from the Internet for their research using the photo elicitation method. In the individual interviews, participants were asked to choose 5 photos from the pool of 14 and discuss what each photo meant to them, in the group interviews participants were asked to choose 2 photos. This method helped to bring context to the interview questions and allowed for a better understanding of the world as seen by the Congolese participants. Prior to the data collection period, the first author actively engaged with the community. This involved attending multiple community events including a

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Congolese community dinner and a community information session with the region’s local Member of Parliament. These events provided an opportunity to introduce herself to the Congolese community. Furthermore, these events provided her with a greater understanding of the broader issues facing the Congolese community in the regional area. Her involvement with the Congolese community provided context to this research and made the research process meaningful to her. Some main findings from this study are discussed in the following sections. Please note that to refer to some young people in the study in these sections, a pseudo name to protect the true identity of each participant is used.

4

Social Connection and Friendship Diversity

Social connections that cross borders of class, culture, and age are referred to as bridging capital (Putnam 2000; Spaaij 2011). Establishing social connections with other cultural groups is essential for refugees to integrate into their communities (Ager and Strang 2004; Bansel et al. 2016; Drolet and Moorthi 2018; Uzelac et al. 2018; Børsch et al. 2020). All young people interviewed for this study described their friendship group as culturally diverse and they all extremely valued this. According to Monifa: “It’s really good having people from different cultures and religions, like you learn a lot from them and they learn from you.” Kanye supported this: “You almost pretty much understand where most people come from in the world.” The participants valued the support they received from their friends. Most reflected on the practical support they received from their friends upon arrival in the regional town. Many also reflected on the influence their friends had on their language acquisition. Lawrence stated: “So as an African it’s really good to be friends with Australians, because they are the people who are going to teach you English.” However, for some participants, language was a barrier to consolidating friendships. Kieran discussed his relationship with an Australian friend: “For me it’s difficult, if she calls I cannot pick up my phone because I cannot understand what she’s saying.” Bonding capital refers to a person’s supportive social networks that are most often homogenous and are characterized by strong ties that have typically been in place for a long time (Spaaij 2011; Major et al. 2013). Bonding relationships with one’s own ethnic community provide an important sense of belonging for refugees (Spaaij 2011; Bansel et al. 2016; Drolet and Moorthi 2018; Uzelac et al. 2018; Børsch et al. 2020). Several young people spoke of the instant connection they had with Congolese people. Even if they did not know each other prior to arriving in the town, their shared experiences enabled them to form a bond. All of the participants appreciated their Congolese and non-Congolese friends and recognized the support they had received from them over the years. Regina used the following image to describe the support she received from her friends (Fig. 1).

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Fig. 1 Support from friends. (Source: Shepparton news 2014)

Okay this one, friendship. I honestly don’t know what I would have done if I didn’t have the friends that I have today or back then. Friendship is really big to me. I’ve been through so much but my friends are really understanding of that. (Regina)

5

Community Participation and Social Integration

All of the participants had taken part in community-based activities at some point, with most still participating in activities such as sport, music, or cultural activities. To many of them, community activities assisted them to integrate into the community (Brough et al. 2003; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Farello et al. 2019). Most young people discussed the sense of belonging they felt in their chosen activities. They appreciated the way in which community participation provided them with an opportunity to demonstrate their skills and talents to the wider regional community. There was general agreement among the young people that participation in community-based activities increased their level of integration in the community. Michael discussed how he used his talent for singing as a bridge in order to become friends with people who had similar interests.

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Yes, I can say yes because like when we meet with one of the Australians we just, if you just tell he or her that you are a singer that person will feel much interested in you and say ‘Wow are you serious? Can you do that for me?’ And when you sing a little bit then you just feel it and then wow you are good and we just become friends.

Most participants played a sport of some kind. The team nature of the sport was a common theme among these young people. The level of trust generated within a sports team is thought to break down cultural barriers and enable friendships to be made (Block and Gibbs 2017; Farello et al. 2019). Obasi compared sports teams to families: “When you wear that jersey you feel like a family.” Many young refugees also reflected on the way friendships formed through community-based activities could be transferred to other aspects of life. Halim stated: “If you play a sport and you have a club event or whatever, you make friends, and once you’re friends you don’t need a club event for you guys to catch up.” The young peoples’ socio-cultural background influenced how they chose to participate in the community. Soccer and music were the most common activities among the group. Soccer is a very popular sport in Congo, and music and dancing are integral elements of Congolese culture. Several young refugees, like Obasi, discussed how they: “Grew up playing soccer.” Playing soccer provided the participants with an important link to their culture. This concept could also be applied to music. Music, like sport, has the potential to override cultural barriers (Lenette and Sunderland 2016; Henderson et al. 2017). Music represented a sense of nostalgia for some participants. For Olina, music reminded her of “back home.” Through singing and dancing, many participants felt they were representing their heritage and their culture. Most of the young people displayed a strong sense of pride in their culture and were eager to demonstrate their skills and talents to their community. Participating in community-based activities allowed them to do this. The following statement reflects Sosuke’s pride in Congolese peoples’ natural soccer skills: Every Congolese [person] it seems that we can play soccer, like we have this, I don’t know the word, we have this coordination that is just yeah, like it’s rare to meet a Congolese guy who can’t really play the ball, I just haven’t really met one. . .It’s just something that we have I guess.

Hussein used the following image to discuss his community’s skills and talents (Figs. 2 and 3). I know these people they are the X band they sing around, he’s my friend and that’s his brother up there. And they have a band where they go around singing Christian songs to like churches. . .So yeah, they’re pretty cool guys, this guy he can sing as good as Michael Jackson, and this guy can probably dance as good as Chris Brown so. . .

Community participation also provided an important outlet for young people. They discussed how their participation in things like sport, music, and art allowed

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Fig. 2 Image of Congolese band. (Source: McPherson Media Group, 2014)

Fig. 3 Image of footballers (McPherson Media Group, 2014)

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them to escape reality. Regina and Kanye discussed the positive effect that their hobbies had on their mental health: When I played [soccer] I felt like it was something that I really loved. I felt like nothing else was bothering me. I just did it because I could. I didn’t have to worry about everything else, not I have homework or I have this, it was just there and then. (Regina) It’s chilled, it’s like music is a life you know? It’s like music makes me, it almost like takes me out of the norm and takes my mind somewhere else pretty much. (Kanye)

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Community Participation: Challenges

Many young people saw community participation as an opportunity to demonstrate their skills and talents to the wider community. However, there was a sense among some that there were not sufficient opportunities in the town to do this. For some, this was due to a lack of information. Many Congolese people wanted to be more involved in the community, “but they don’t know where to go.” Gender was also identified as a barrier to playing sport: Um mostly the boys, mostly all the boys that I see get involved in sport. But a lot of girls do not try. A lot of girls when they come at a mature age they don’t want to try. (Lolie)

For others, perceived negative opinions about Africans affected their level of participation. Lawrence participated in the community in order to change these opinions: First off they think that maybe we are lazy, we can’t do anything. I’ve found that from a few students. And so once we get up and do it, they get to feel like oh yeah they can do something.

This desire to have his skills recognized by the wider community was shared by Michael: Yeah also like me, I can play football, I can sing, I can dance, I can play everything. I don’t know I just have a lot of skills. So these people are surprised, ‘Oh you can do this, this as well?’. . . All I can say is they should give us chances to show our strengths.

Despite this perceived resistance, many young people displayed a remarkable amount of courage and determination to get the most of their involvement in the community. Lawrence, an aspiring Australian Football League umpire, used the following image to share his view: Well footy (football) reminds me that yeah I have to push myself harder in order to make it to the highest league, or one day to be seen on the TV as an African person. If I do it when someone else hasn’t done it I’ll be the first Congolese person to make it to leagues, which are shown on TV. Especially in X I’ll be the first African that had done umpiring in footy. So that’s what this picture tells me, it pushes me to keep pushing harder.

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Resilience and Young People with Refugee Backgrounds

The participants all shared similar values and personal characteristics. Each individual valued multiculturalism and had a high level of respect for other cultures. The resilience of the young people and their determination to succeed in Australia was also a common theme (Koh et al. 2013; Sleijpen et al. 2017; Marley and Beatus Mauki 2018; Vindevogel and Verelst 2020). The young people valued the cultural diversity within their regional community. Kanye discussed how in a multicultural environment “people are forced to learn what other people’s cultures are.” This was significant as many young people acknowledged that it was important to get to know someone personally before passing judgment. According to Halim, “everyone has their own story and their own reasons” for doing what they do. Monifa used the following image to express her feelings on multiculturalism (Fig. 4). Well it’s multicultural as you can see it’s interracial. . . So to me, when I look at this picture I just see that you know love is not about the culture or should I say the skin colour, it’s what’s inside. And also friendship as well, it’s not about the skin colour of a person, it’s about their heart. And also it’s not about their religion, it’s mostly about who you are and what kind of person you really are. That’s what really matters.

Fig. 4 Pop culture image of multiculturalism (Kardashian 2014)

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The young people were grateful for the support they had received since arriving in Australia and determined to give something back to the community. They were acutely aware of the opportunity they had been given in Australia. Lolie discussed how her life in Australia compared to Congo: We used to dream about having food every day, not having to sleep without eating, or having electricity, having lights at night, they used to be our dreams like having those. But when you come here there’s more. It’s like we didn’t even dream enough. And now we can dream even more.

Whether they were studying, working, or looking for work, each young person displayed a strong work ethic and commitment to making the most of their life in Australia. This determination to succeed can be seen in Obasi’s comment: I guess because I came from Africa and you don’t want to come here and just waste time. Like you see other kids go and start drinking and quit school. For me I feel like from where I came from, I want to make something out of myself.

The young people displayed a remarkable amount of resilience throughout their lives. Many of them acknowledged that their past experiences had made them stronger. I don’t want people to feel sorry for me because I have had the best life. I feel like that’s how my life was supposed to be. Because if I didn’t have everything that happened to me when I was younger, everything, you know the war and the experience that we had when we were younger, if we didn’t have that, I don’t know how I would be...It’s made me who I am (Lolie).

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What Do We Learn from Young People with Refugee Backgrounds?

Our study revealed three significant findings. First, young people with refugee backgrounds rely on a variety of social support networks in order to effectively integrate into regional communities. Second community-based activities have great potential to enhance the social capital of young people with refugee backgrounds in regional areas. Third, despite being faced with a number of barriers, young people with refugee backgrounds possess a unique form of resilience and determination that sets them in good stead to succeed in Australia. Research suggests that building and maintaining relationships with friends are important for providing young refugees with a sense of belonging and support (Brough et al. 2003; CMY 2006; RCOA 2009). In line with previous research, the young people in this study identified their friends as significant sources of support upon their arrival in the regional town (Brough et al. 2003). Specifically, they mentioned how their friends helped them learn the English language and integrate into the community. All of the young people described their friendship groups as

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multicultural. Putnam (2000) refers to social connections that cross-cultural borders as bridging social capital. Social connections such as these are essential to the integration of refugees (Ager and Strang 2004; CMY 2006; Correa-velez et al. 2010; Wilkinson et al. 2017; Børsch et al. 2020). All of the young people discussed the importance of having Congolese friends, and they appeared to have a unique relationship with their Congolese friends, which contributed positively to their sense of identity and belonging (Correa-velez et al. 2010; Wilkinson et al. 2017; Børsch et al. 2020). These unique relationships are what Putnam (2000) refers to as bonding social capital. Putnam suggests that strong, homogenous bonding ties such as those with family, long-term friends, and cultural groups provide an individual with a sense of comfort and support that is not attainable through other social networks. In regional areas, sport and recreation facilitates social inclusion and shapes community identity (Regional Sport Victoria 2013). It is, therefore, unsurprising that all of the young people in this study had participated in community-based activities at some point, with most still participating in sport, music, or cultural activities. Community participation through sport, recreation, and other activities has been identified as a priority area for newly arrived young people in Australia (CMY 2006; Nathan et al. 2013; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Farello et al. 2019; Spaaij et al. 2019). There was general agreement among the young people that participation in community-based activities had a positive effect on their settlement experience. Community participation enabled them to make friends with a diverse range of people, which in turn enhanced their social capital, and facilitated their integration into the community. As Putnam (2000) theorizes, bridging capital enables the crossing of social groups through the sharing of mutual interests, ideas, and innovation. Studies conducted by the Centre for Multicultural Youth (2007) and Nathan et al. (2013) revealed that sport and recreation had a positive effect on the bridging social capital of young refugees in Sydney and Melbourne (see also Nathan et al. 2013; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Farello et al. 2019; Spaaij et al. 2019). The participants in their studies took part in multicultural community-based activities and were able to build cross-cultural social networks. The authors contend that community participation is important as it provides young people with refugee backgrounds with an opportunity to expand their social networks, which are often diminished during the process of forced migration (Colic-Peisker and Walker 2003; Ryan and D’Angelo 2018). The young people also reflected on how they were able to strengthen their relationships with Congolese community members through community participation. Many participants enjoyed participating in Congolese activities such as choirs, bands, and community events. Spaaij (2011) and Spaaij et al. (2019) also identified the potential of community activities to strengthen relationships within ethnic groups (see also Brough et al. 2003; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017). According to Putnam’s (2000) theory of bonding capital, relationships with one’s own ethnic community provide an important sense of belonging for migrants and refugees. Ager and Strang (2004) identified both

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bonding and bridging capital as key indicators of integration for refugees in their study in the UK. Building and maintaining friendships was not the only reason that young people in this study chose to participate in community-based activities. Sport, music, and art were identified by a number of them as methods to cope with the various stresses in their lives (Brough et al. 2003; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Farello et al. 2019; Spaaij et al. 2019). These activities provided the young people with an important outlet where they could focus on the activity itself and nothing else. These findings are in line with previous research, which suggests that community participation is a common coping mechanism for young refugees (Brough et al. 2003; Nathan et al. 2013; Lenette and Sunderland 2016; Block and Gibbs 2017; Henderson et al. 2017; Spaaij et al. 2019). While many young people in this study had established links to the wider community by participating in community-based activities, some of them had limited opportunities to get involved in the community. This was particularly true for those who had been living in a regional town for less than 5 years. For some, a barrier to their participation in the community was their lack of knowledge of the opportunities available to them. Coventry et al. (2002) and the Refugee Council of Australia (2009) have also revealed that young refugees are often unaware of opportunities to participate in the wider community. Gender was also identified as a potential barrier to participation. While most of the girls in this study did participate in the community through musical or cultural activities, few participated in sport. Studies conducted by Spaaij (2011), Nathan et al. (2013), and Farello et al. (2019) identified fewer opportunities for females to develop social capital through sport when compared to males. Based on the self-determination theory, Deci and Ryan (2000) offer an explanation as to why some people were less inclined to participate in community-based activities than others. They claim that humans have a vulnerability to passivity when they are in an environment that is not conducive to their activity (Deci and Ryan 2000). This suggests that due to a lack of information and encouragement, unconnected young people with refugee backgrounds, particularly young females, are at risk of becoming uninvolved in the community. Another barrier to participation was the perceived negative perceptions held by members of the wider community about Africans. While the majority of young people in this study had not experienced discrimination when participating in sport or other community activities, for some of them, discrimination was a significant barrier to their participation. The negative effect that this perceived discrimination had on their involvement in the community can also be explained by the social determination theory. Deci and Ryan (2000) suggest that self-motivation flourishes when an individual is in a secure and relatable environment; however, certain environmental conditions can subdue and diminish an individual’s self-motivation. Perceived discrimination in the sport and other community-based activities may have diminished the motivation of some participants to get involved in the community. The barriers to participation that have been identified above are important given the potential of community participation to enhance the settlement experiences of young refugees. The Centre for Multicultural Youth (2006) identified a need for

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tailored recreational activities that meet the needs of young refugees in Melbourne. The findings from this study suggest that this need also exists in regional areas. The young people in this study displayed a level of resilience and adaptation that has been identified in the literature as a unique characteristic of young refugee people (Coventry et al. 2002; Koh et al. 2013; Phinney et al. 2006; RCOA 2009; Sleijpen et al. 2017; Marley and Beatus Mauki 2018; Vindevogel and Verelst 2020). The personal values and strengths of the young people in this study positively affected their settlement experiences. Basing on the theory of acculturation, Berry (2005) suggests that integration is the most desirable acculturation strategy for refugees. Integration involves maintaining one’s own culture while simultaneously adapting to the host culture (Berry 2005). Most participants adopted this strategy and had successfully integrated it into the regional community. This process involved overcoming cultural differences, managing expectations, and establishing new social networks. These actions are typical of young migrants when acculturating to a new community (Phinney et al. 2006). The young people had been able to do all of this while still maintaining a strong connection to their Congolese culture. The ability of the young people to balance their Congolese culture and the Australian culture is testament to the adaptability of this group of young people and also to the support they received. Literature suggests that due to the nature of their past experiences, young people with refugee backgrounds often arrive in Australia accompanied by a fierce determination to succeed (RCOA 2009; Bansel et al. 2016). The young people in this study were committed to making the most of their lives in Australia. According to Deci and Ryan (2000), determination is an innate characteristic of humans and will develop when an individual is in an environment conducive to its expression. The young people were aware of the opportunity they had been given to succeed in Australia, and were determined to utilize every opportunity available to them. This sense of determination has been identified in previous research. Coventry et al. (2002) revealed that 90% of young refugees commit to full-time study upon arrival in Australia, and Hugo (2011) revealed that second-generation refugees are 10% more likely to attain post-school qualifications than the average Australian. The findings from this study and previous research (Coventry et al. 2002; Hugo 2011; Bansel et al. 2016) reveal that Congolese young people and young refugees in general possess a strong sense of determination and drive that should be harnessed and supported by the wider Australian community. The resilience displayed by the young people in this study assisted them to manage their new lifestyles in Australia. When asked to describe themselves the participants used words such as “tough,” “optimistic,” and “confident.” All of them spoke positively about the future and it seemed that if anything, their past experiences had only made them stronger. After observing the acculturation experiences of immigrant youth in the UK, Phinney et al. (2006) noted that young migrants do not identify themselves as pawns of their circumstances. The same could be said for the young people in this study. This group of young people were not passive victims of their refugee past; rather they were dynamic agents, actively shaping meaningful lives for themselves in Australia.

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Conclusion and Future Directions From other interviewing experiences, I know that, without the photographs, it would have been difficult, if not impossible, to sustain interviews over a long period of time and to accomplish the kind of depth we were able to achieve. With the photographs, the interviews moved almost effortlessly, opening up subjects, in many cases, I would have never antici pated. (Harper 1988, p. 65)

In this chapter, the authors have discussed the use of the photo elicitation method as an inclusive research approach in the research concerning young people with refugee backgrounds living in regional towns in Australia. Through photographs, the authors have demonstrated the challenges and resilience of young people with refugee backgrounds in their attempts to settle into a new life in Australia. As Harper suggests (above), the authors found that photographs enhance understanding of the lived experiences of the young people who took part in this study. To the best of authors’ knowledge, this study is the first of its kind to explore the social experiences of young people with refugee backgrounds in a regional Australian town. Given the current global migration climate and the increasing numbers of refugees settling in regional areas, this chapter provides an important contribution to the literature guiding refugee policy and practice in this area. It highlights that social capital, including bonding and bridging capital, is important for young people with refugee backgrounds whose social relationships are often diminished during the process of forced migration. This chapter identifies community participation as a potential means for restoring social capital for young people with refugee backgrounds, particularly in regional Australia where community participation is common. Finally, the chapter highlights the strength and resilience of young people with refugee backgrounds, revealing their great potential to succeed in Australia. Future research would benefit from an exploration of the social experiences of refugees of varying ethnicities, living in a range of regional towns, over a longer period of time with the use of the photo elicitation method. The authors have found that the method was valuable in allowing the young people in the study to articulate their needs to make the social connection to the wider community so that their settlement in Australia can be enhanced. The authors would highly recommend the adoption of this method in future research concerning young people with refugee backgrounds around the globe.

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Marley, C., & Beatus Mauki, B. (2018). Resilience and protective factors among refugee children post migration to high income countries: A systematic review. European Journal of Public Health, 29(4), 706 713. Marsh, W., Shawe, J., Robinson, A., & Leamon, J. (2016). Moving pictures: Including photo elicitation into a narrative study of mothers and midwives experiences of babies removed at birth. Evidence Based Midwifery, 14(2), 44 48. McDonald Wilmsen, B., Gifford, S. M., Webster, K., Wiseman, J., & Casey, S. (2009). Resettling refugees in rural and regional Australia: Learning from recent policy and program initiatives. The Australian Journal of Public Administration, 68(1), 97 111. McLaughlan, R. (2019). Virtual reality as a research method: Is this the future of photo elicitation? Visual Studies, 34(3), 252 265. Mohammad, R., Horey, D., Liamputtong, P., Low, W. Y., & Sidi, H. (2019). Meanings of sexuality: Views from Malay women with sexual dysfunction. Archives of Sexual Behavior, 48(3), 935 947. Musoni, E. (2019). Understanding regional settlement in Australia: Key learnings from past experiences. Canberra: The Regional Australia Institute. Nathan, S., Kemp, L., Bunde Birouset, A., Mackenzie, J., Evers, C., & Shwe, T. A. (2013). “We wouldn’t of made friends if we didn’t come to football united”: The impacts of a football program on young people’s peer, prosocial and cross cultural relationships. BMC Public Health, 13(1), 13 399. Ndione, L. C., & Remy, E. (2018). Combining images and words in order to understand the cultural meaning of practices: What photo elicitation reveals. Recherche et Applications en Marketing, 33(3), 61 84. Noland, C. M. (2006). Auto photography as research practice: Identity and self esteem research. Journal of Research Practice, 2, 1 19. Phinney, J. S., Berry, J. W., Sam, D. L., & Vedder, P. (2006). Understanding immigrant youth: Conclusions and implication. In J. W. Berry (Ed.), Immigrant youth in cultural transition acculturation, identity, and adaptation across national contexts (pp. 211 235). Hoboken: Lawrence Erlbaum Associates. Piper, M. (2009). Regional humanitarian settlement pilot: Ballarat. Canberra: Department of Immigration and Citizenship. Piper, M. (2017). Refugee settlement in regional areas: Evidence based good practice. Published by the Department of Premier and Cabinet. Available at: http://multicultural.nsw.gov.au/about_us/ publications/others/ Pittaway, E., Bartolomei, L., & Doney, G. (2016). The glue that binds: An exploration of the way resettled refugee communities define and experience social capital. Community Development Journal, 51(3), 401 418. Portes, A. (1998). Social capital: Its origins and applications in modern sociology. In L. Eric (Ed.), Knowledge and social capital (pp. 43 67). Boston: Butterworth Heinemann. Putnam, R. D. (2000). Bowling alone: The collapse and revival of American community. New York: Simon & Schuster. Queensland Council of Social Services (QCOSS). (2014). Developing a framework for the imple mentation in Queensland of the Australian Government’s regional dispersal policies for the resettlement of refugees in Regional Australia. https://www.qcoss.org.au/refugee re settlement regional australia. Accessed 7 Apr 2014. Radley, A., & Taylor, D. (2003). Images of recovery: A photo elicitation study on the hospital ward. Qualitative Health Research, 13(1), 77 99. Refugee Council of Australia (RCOA). (2009). Amplifying the voices of young refugees. Mel bourne: Refugee Council of Australia. Refugee Council of Australia (RCOA). (2015). Australia’s refugee and humanitarian program 2015 16: Community views on current challenges and future directions. http://www. refugeecouncil.org.au/wpcontent/uploads/2014/08/2015 16_IntakeSub.pdf. Accessed 7 Apr 2014. Refugee Health Network. (2015). Rural and regional. http://refugeehealthnetwork.org.au/engage/ rural regional/. Accessed 7 Apr 2014.

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Regional Sport Victoria. (2013). Victorian Regional Sport 2014 to 2018 A Regional Sport Victoria statement to State Government. http://www.regionalsportvictoria.org.au/wp content/uploads/ 2013/11/Regional Sport Victorias statement to State Government 06 03 2014.pdf. Accessed 7 Apr 2014. Ryan, L., & D’Angelo, A. (2018). Changing times: Migrants’ social network analysis and the challenges of longitudinal research. Social Networks, 53, 148 158. Santoro, N., & Wilkinson, J. (2016). Sudanese young people building capital in rural Australia: The role of mothers and community. Ethnography and Education, 11(1). https://www.tandfonline. com/doi/full/10.1080/17457823.2015.1073114?casa_token z3dVC7t7Wi IAAAAA:iJOHlYH sbztyBHogDY0986jOll3CxwTaS7WWgmG0mEZa4NofbehIP4uWhp9jDb0jjPAbtBBhuTuEpg. Serry, T., & Liamputtong, P. (2022). The in depth interviewing method in health. In P. Liamputtong (Ed.), Research methods in health: Foundations for evidence based practice (4th ed., pp. 76 92). Melbourne: Oxford University Press. Shepley, C. (2007). Regional settlement in Australia: Research into the settlement experience of humanitarian entrants in regional Australia 2006 07. Canberra: Department of Immigration & Citizenship. Shepparton News. (2014a). Figure 1: Image of netballers in Shepparton. premiers. http://www. mmg.com.au/photos?showGalleryId 80914. Accessed 12 Apr 2014. Shepparton News. (2014b). Figure 3: Image of footballers. http://www.mmg.com.au/photos? showGalleryId 53841. Accessed 12 Apr 2014. Sleijpen, M., Mooren, T., Kleber, R. J., & Boeije, H. R. (2017). Lives on hold: A qualitative study of young refugees’ resilience strategies. Childhood, 24(3), 348 365. Spaaij, R. (2011). Beyond the playing field: Experiences of sport, social capital, and integration among Somalis in Australia. Ethnic and Racial Studies, 35(9), 1519 1538. Spaaij, R., Broerse, J., Oxford, S., Luguetti, C., McLachlan, F., McDonald, B., Klepac, B., Lymbery, L., Bishara, J., & Pankowiak, A. (2019). Sport, refugees, and forced migration: A critical review of the literature. Frontiers in Sports and Active Living, 1, 47. https://doi.org/10. 3389/fspor.2019.00047. Taylor, J., & Stanovic, D. (2005). Refugees and regional settlement: Balancing priorities. Mel bourne: Brotherhood of St Laurence. Uzelac, A., Meester, J., Goransson, M., & van den Berg, W. (2018). The importance of social capital in protracted displacement. Forced Migration Review, 57, 28 30. Vindevogel, S., & Verelst, A. (2020). Supporting mental health in young refugees: A resilience perspective. In S. J. Song & P. Ventevogel (Eds.), Child, adolescent and family refugee mental health: A global perspective (pp. 53 65). Springer: Switzerland. https://doi.org/10.1007/978 3 030 45278 0_17. Wilkinson, J., Santoro, N., & Major, J. (2017). Sudanese refugee youth and educational success: The role of church and youth group in supporting cultural and academic adjustment and schooling achievement. International Journal of Intercultural Relations, 60, 210 219.

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Sexual Dysfunction and Malay Women Rosediani Muhamad, Dell Horey, and Pranee Liamputtong

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Why Visual and Inclusive Methods in Data Collection? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Types of Inclusive Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Uses of Photo Elicitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 A Case Study of Photo Elicitation: Sexual Dysfunction and Malay Women . . . . . . . . . . . . . 3.1 Practical Issues for Inclusive Visual Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Data Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Ethical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 How Did Photo Elicitation Enhance Findings? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Meanings of Sexuality and Its Changes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Complex Feelings and Emotional Consequences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Arts Based Guide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix B . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Example of a Specific Consent Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix C . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Example of a Publication Consent Form . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Appendix D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Example of a patient’s Agreement for Hiring the Camera Form . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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R. Muhamad (*) Family Medicine Department, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia e mail: [email protected] D. Horey Department of Public Health, College of Science, Health and Engineering, Bundoora, VIC, Australia e mail: [email protected] P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_62

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Abstract

Research into sensitive issues such as sexuality requires inclusive research methods if the experiences of women from diverse sociocultural backgrounds are to be included. Photo-elicitation is one of the visual methods adopted by the social and health sciences, particularly in research involving phenomena related to children and young adults, suitable for inclusive approaches as it offers opportunities for the inclusion of sensitive topics and/or vulnerable populations. This chapter uses a research study to explore sexuality issues among Malay women as a case study to show how photo-elicitation can be adopted. The aim of the research was to understand the meanings heterosexual Malay women attach to sexuality and their experiences of living with sexual dysfunction. In this case study, photo-elicitation facilitated data collection with photographs provided by the researchers. Photo-elicitation enabled participant experiences to be visualized and to be understood in ways that showed how the women perceived their problems and their impact. Communication on a topic that is strictly socially taboo was enhanced through the use of the photo-elicitation method. The chapter explains why participants preferred photo-elicitation over other visual methods and concludes with a summary of the strengths of photo elicitation as a method, implications for practice, and recommendations for further use. Keywords

Drawing · Female sexual dysfunction · Inclusive method · Photo-elicitation · Photovoice · Visual method

1

Introduction

Researching sensitive issues such as female sexual dysfunction (FSD) can be challenging, especially in conservative communities, where such matters are strictly socially taboo. Sensitive research topics commonly involve people who are already vulnerable, and researchers need to consider how they can encourage participants to talk openly about their intimate experiences. For some people, such as women with sexual dysfunction, who may already feel embarrassed and/or distressed about their situation, involvement in any research study may raise concerns about exacerbating their psychological risk (Liamputtong 2020; Seidman 2013). Three main methodological challenges are raised for researching sensitive topics. First, the sensitive nature of the topic could lead to difficulties obtaining ethical approval. Second, reluctance to participate could affect study recruitment. Third, there could be problems getting participants to talk openly about their experiences, which could have implications for data collection (Liamputtong 2020). Consideration of these challenges is clearly important when thinking about how to approach this type of research. The focus of this chapter is data collection, with particular attention on inclusive approaches. In-depth interviews are frequently used to explore sensitive topics.

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Interviews are a well-established method for gathering rich data, for revealing complex issues, and for exploring participant perspectives of personal feelings, opinions, and experiences (Serry and Liamputtong 2022; Liamputtong 2020). In-depth interviews can facilitate discovery of sociocultural effects, encourage participant cooperation, and highlight the lived experiences of health and illness and can be especially valuable for collecting data from those who are disempowered by their illness (Creswell and Poth 2018; Liamputtong 2020). Inclusive methods are approaches explicitly designed to support those who feel particularly vulnerable to the disclosure of intimate information in in-depth interviews (Eder and Fingerson 2002; Liamputtong 2007, 2020) and have particular value for those population groups whose voices are often silent in research. For example, research exploring sexual dysfunction in women commonly uses in-depth interviews, but studies have tended to be conducted among mostly educated and busy working women in the urban areas of Malaysia (Muhamad et al. 2019).

2

Why Visual and Inclusive Methods in Data Collection?

Visual methods and drawing are two inclusive strategies that have been used to encourage discussion of difficult topics during interviews (Rose 2012; Wagner 2011; Guillemin and Westall 2008). These methods are used either as adjunct strategies in initial interviews or introduced in follow-up interview sessions to reinforce what has been shared in the first interview (Meo 2010). Visual methods involve including photographs to prompt or enhance discussion during the interviews. The photographs can be either provided by the researcher or generated by the research participants themselves. In the latter situation, participants are invited to take photographs prior to the interview that depict their situation (Liamputtong 2020; Reavey 2011; Rose 2012; Wagner 2011). The two popular types of visual method are photovoice and photo-elicitation. Drawing is another image-elicitation method suitable for researching sensitive issues such as sexuality (Liamputtong 2020). It involves the use of any instrument, such as multicolored pencils, crayons or pastel colors, or even pencils or pens, by study participants to illustrate their experiences or to enable disclosure of difficult issues they find hard to verbalize. Drawing was first used in research on children, and with adults to explore their understanding of their illness (Liamputtong and Fernandez 2015; Morgan et al. 2009; Westall and Liamputtong 2011; Joseph et al. 2019).

2.1

Types of Inclusive Methods

Photovoice involves participants identifying images that represent their problems in a way they believe their community would understand (Wang and Burris 1997). As these images act as records of their feelings and experiences, they become potential catalysts for change by conveying feelings and experiences to the community. In effect, the image, or photo, becomes a voice to the community.

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There is evidence supporting the use of photovoice in research involving sensitive issues (Wilkin and Liamputtong 2010; Harley and Hunn 2015; Teti et al. 2020; Ussher et al. 2021). However, the literature also reveals that some researchers using photovoice have experienced technical difficulties (Asniar and Wironpanich 2011). The photovoice was also found to be time-consuming especially when interviews involved different categories of participants and need to inform the results to the authorities. For example, in researching health and environmental issues among Indigenous people (Huu-ay-aht First Nation) in Canada, photovoice was used in combination with the community-based participatory research (CBPR) method involving three categories of participants which included 40 community members, three advisory committee members, and two community researchers. The result has been informed to the community using posters in five potluck community dinners (Castleden et al. 2008). Photo-elicitation also uses photographs in the interview process, but these are provided by the researcher, and are used in the same way that texts are sometimes used (Harper 2002). Photo-elicitation interviews are popular in disciplines such as anthropology, and sociology, but are slowly emerging in areas such as psychology (Bates et al. 2017) and public health (Muhamad et al. 2019). There are several reasons for using photo-elicitation in interviews. It is an easy and flexible method that can capture richer data than an in-depth interviewing method (IDI) alone (Hugh-Jones and Gibson 2012). When a photograph is added to an interview, it activates different parts of the human mind that respond and process visual information than that which processes verbal information causing it to become a longer conversation but a more interesting interview (Harper 2002; Meo 2010). This type of response is not limited to photographs but extends to all forms of images including photovoice, drawings, works of art, cartoon strips and caricatures, public advertisements and even graffiti, collage, sculpture, film, video (Glaw et al. 2017; Harper 2002), and even cave drawings, etchings, woodcuts, and lithographs (Loizos 2001). Photographic images have become one of the foremost means of representation and communication in contemporary societies. Ndione and Remy (2018) believe that the fast diffusing culture of smartphones has aided the use of photography in daily communication into the research. Smartphones have facilitated an explosion in the range of photographs that can be used in research using photo-elicitation. The wide range of images available were described as a continuum by Harper (2002, pp. 13–14) that can be divided into three areas. At one end are images that can be defined as scientific which include objects, people, and artifacts as visual inventories and are common in anthropology. The middle range of the continuum comprises images depicting collective or institutional histories or events related to work, study, and other institutional experiences relevant to an interviewee’s past. The other extreme of the continuum is personal and social. It includes intimate images that convey an individual’s body, family, and other intimate social groups. The range of photographs that can be used means that photo-elicitation interview provides a way for individuals to connect through images to influences surrounding them – societal, cultural, and historical – and use these visual narratives to find

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meaning (Bauman 1988, p. 790). Apart from the ability of photo-elicitation to capture details in a different way, this type of visual method can enrich the data by revealing extra layers of meaning, by validating existing data, and, in doing so, create new insights and knowledge (Glaw et al. 2017, p. 1). For these reasons, photo elicitation interviews are often seen as not simply an interview process that elicits more information, but rather a process that evokes different kinds of information.

2.2

Uses of Photo-Elicitation

Photo-elicitation interviews have been used widely among researchers who seek to understand women’s experiencing of “motherhood,” including parenting an infant or children with a particular medical condition (Murray et al. 2015); during the postpartum period and while breast-feeding (Nash 2015); among different migrant groups (Benza and Liamputtong 2017); and how women feed their families and make food choices (Johnson et al. 2010). Photo-elicitation has also been used to explore understanding of: perceptions of illness and care among women with chronic diseases (Che Ya et al. 2021; Fritz and Lysack 2014); identity of homeless women (Bareham et al. 2013); and those involved in crime and deviant behaviours (Copes et al. 2018). In sexual health research, a field dominated by the study of sensitive issues, photo-elicitation interviews can be important to understanding the complexity of sexual activities and their interaction with sociocultural issues in detail. Using photoelicitation also has the potential to identify solutions. For instance, Smith (2015) used photo-elicitation interviews to understand how female sex workers in Australia deal with stigmatization, and Nguyen et al. (2018) used photo-elicitation to illustrate sexual and reproductive experiences of physical disabilities among the Vietnamese community. Allen (2011) employed photo-elicitation in interviews with adolescents in New Zealand secondary schools to garner their experiences of sexuality.

3

A Case Study of Photo-Elicitation: Sexual Dysfunction and Malay Women

In-depth interviews were conducted with 26 heterosexual Malay women in Malaysia to explore their experiences of female sexual dysfunction (Muhamad et al. 2019). Participants’ experiences, the consequences of sexual dysfunction, and the coping strategies Malay women employed were aimed to be understood. Data were collected over a 1-year period. Participating women completed a brief sociodemographic questionnaire, which included socio-demographic information (age, educational status, and economic status; marital and sexual function background such as duration of the marriage, and types of sexual difficulties).

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During the initial in-depth interview, the women were asked if they were interested in a second adjunct interview using visual methods or drawing; 23 women (88%) opted for a second interview and all chose the photo-elicitation method.

3.1

Practical Issues for Inclusive Visual Methods

All 26 women were offered 3 inclusive visual methods after completing their in-depth interview. The three options offered to them are photo-elicitation, photovoice, and drawing methods. In the creation or selection of images, all three methods asked the women to consider: their feelings about their day; their feelings about living with sexual difficulties; the experiences they found pleasurable; and their relationship with their husband. All adjunct interviews focused on the selected images and involved exploring each image one-by-one. To obtain insight into women’s experiences and their understandings on sexuality, a two-stage enquiry process was used. In the first stage, women were asked five general questions that sought to understand how they interpreted the image (see Table 1), and in the second stage, the women were invited to explain how the photo linked to their experiences and how they saw its meaning (see Table 2) (Hatten et al. 2013).

3.1.1 Photovoice Our plans for photovoice were to ask the women to capture eight photographs illustrating responses to the three key/focus questions: their feelings about their day about living with sexual difficulties; about pleasurable experiences in the day; and that portrayed their relationship with their husband. It was planned to lend digital cameras to those who did not have one of their own and discussed the logistic issues Table 1 General questions used for visual methods

No 1 2 3 4 5

Questions What do you see in this picture? What is happening in this picture? What connection does it have with your life? Why this photo has been chosen? What can be done for it?

Table 2 A visual guide INSTRUCTION FOR PARTICIPANTS Please choose any provided photographs up to eight photos, with regard to: PHOTOS QUESTIONS First photo Your thought about meanings of sexuality or sexuality learning experience you had gone through Second Your feeling of living with sexual difficulties in day to day life photo Third Your feelings with the relationship and any pleasure with your husband photo

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of camera use in terms of what or who could be photographed, by consent. The photographs needed to be suitable to share with policy makers and depict community issues. The women could take photographs of any objects, spaces, places, or people (as long as they sought written consent from people appearing in photos for the photograph to be used, and to appear in research), and print the photographs. It was estimated that it would take participants approximately 1–2 h to complete these tasks over a 2-week period.

3.1.2 Photo-Elicitation For photo-elicitation, the women were able to choose eight photographs from the researchers’ photo-library containing 35 photographs at the start of the second interview. The women were asked to choose images that addressed the three key/focus questions. After making their selection, the interview proceeded in the same way as that planned for photovoice. No preinterview preparation was required by the women for the photo-elicitation method. The number and type of photographs to use required careful consideration. Supplying too many photographs may confuse participants. Thus, conducting pilot study is crucial, not only for reviewing the clarity of the semistructured questions, obtaining the appropriate recruitment strategies and the appropriate methods to be utilized, but also for determining what type of photographs and how many photographs need to be prepared. At least two to three photographs for every subtheme emerged from the pilot study were shown to be enough (Muhamad et al. 2016). The photo-library was created by selecting 35 free public domain photographs from the Internet. As these photographs originated mostly from Western countries, new photos were taken, or images redrawn more appropriate for Malay cultural norms. The photos were arranged on the table, and the participants were asked to make a choice after reading and analyzing the questions given. Participants were given sufficient time to make their selection. Some women had difficulties choosing because a single photograph at times as the available images only portrayed part of their experience. To address this possibility, the women were purposefully instructed to select two photographs to ensure a comprehensive visualization. At the completion of the study, only two-thirds of images in the photo-library were used. 3.1.3 Drawing For the drawing method, six sheets of A5 paper and some multicolored pencils were prepared for the women to take with them. They were to be encouraged to use any type of coloring product, such as crayons or pastels, or even just pencil or pen for black and white drawings. The instructions given by Cross et al. in their study (2006), as shown in Appendix A, were adopted and modified.

3.2

Data Analysis

The data collected from interviews using visual methods are the narratives generated by the discussions about each photograph. Transcripts from the adjunct interviews were included with the initial in-depth interview data and analyzed using thematic analysis.

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Ethical Issues

The use of inclusive methods carries ethical considerations related to study procedure that involve choice of method, consent and copyright related to the photos taken, and emotional risk.

3.3.1 Choice of Visual Methods All 23 women in this study who agreed to a second interview preferred to use the photo-elicitation method; none of the women chose photovoice or drawing (Table 3). Three women decided not to have a second interview. Among the common reasons for not joining the second interview and these inclusive methods other than photoelicitation was lack of time for busy women although they were given 1–2 weeks to complete the task by producing eight photographs to answer three questions (Copes et al. 2018). Generally, women choose photo-elicitation because they felt it did not have the same difficulties as photovoice or drawing. Time was a big consideration in the use of inclusive methods for all women. Several women indicated that they could not commit to a second interview unless it occurred on the same day, to minimize the time involved. To overcome these problems, the protocol was amended to allow this option, which reduced the inclusive method choices to either drawing or using photo-elicitation. All participants chose the photo-elicitation method over drawing as they saw it as much easier. Table 3 Type of data collection methods and women’s response to them Collection method type Photovoice

Drawing

Photo elicitation

None

Description Take up to eight photographs suitable to show policy makers that illustrated perspectives reflecting community issues over a 1/2 week period in a 1 2 week period that related to any of the following: thoughts of sexuality learning experiences; feelings of living with FSD; and experiences of sexual pleasure Use six A5 sheets and multicolored pencils to illustrate feelings and experiences of living with FSD Choose from 35 provided photos (related to feelings and impact of sexual dysfunction) to illustrate personal perspectives Join in depth interview alone

Women’s response Already busy with daily life, too time consuming as compared to photo elicitation interview that can be done on one setting, reluctant to take photographs, and afraid of raising awareness of their FSD with others

Uptake numbers 0

Not good at drawing Do not know how to express their feeling through drawing

0

Easiest task among all other visual methods Do not have to prepare the photos and can be done on the same setting after adequate rest in between No time to involve in second interview using visual methods

23

3

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However, there was a cost to the same-day approach. There was limited new information gathered in the second interview, which were much shorter than those that were delayed (30 min compared with an hour or more). Second interviews that were deferred for 2 weeks to a month provided much more information to researchers. One participant, Zaini, for example, spent more than 1 h in the second interview adding information that had not been covered in her first interview. She had time to reflect on the questions posed at that time and looked more confident and was more forthcoming and less timid in sharing her experience. Rapport with the researcher was also increased, particularly when compared with those women who requested a same day second interview. Photovoice was considered difficult because it required a lot of mental work. The women realized that they would need to think about, find, and take photographs that could portray their experiences. They felt that this would be an additional burden to their already busy daily activities. Some women were reluctant to take photographs because it might raise awareness of their condition with their husband and friends. Several women had not informed their spouse about joining the study, largely because their sexual problems had already had a negative impact on their relationship. Drawing was rejected as an option despite they were reassured that drawing skills were not needed and that any drawings would only be seen by the researchers, who would use them as a way of understanding their experiences. The women claimed that they could not draw nicely and the high value that Malay culture places on shyness meant that the women were reluctant to share or show anything considered impolite to exhibit publicly (Goddard 1997, 2000; Hamdan and Radzi 2014).

3.3.2 Consent and Copyright Like all research, inclusive methods require appropriate consent forms to be completed by participants. In this study, ethical approval required all participants to sign consent for both in-depth interviews (primary interviews) and the inclusive method interviews (adjunct or second interviews). See Appendix B. Initially, only two forms – consent to participate and a withdrawal form – were prepared. However, after consideration by five different institutional ethics committees, two other forms were added, both related to photovoice: one for publication consent from people who appeared in photographs (Appendix C) and another for an agreement to loan a study camera for participants (Appendix D). Preparing photographs for photo-elicitation interview can involve the issue of copyright if photographs are taken directly from the Internet unless it clearly stated that it is available under public domain (Seth 2020). Images can require permission from their owner if they are to be reproduced or published at some stage. Another issue for this study was the acceptability of some of the images to Malay culture; for example, some women during pilot study commented that photographs showing “foreplay” were not suitable as they felt embarrassed seeing such images. To address potential problems with copyright and cultural acceptability, the creative unit in the university was engaged to develop similar images embedded with Malay culture and sought appropriate photographs of Malay couples through social networks.

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All consent forms, photos, and research materials were stored securely and only shared by encrypted e-mails between the researchers using separate folders.

3.3.3 Psychological Risk Studies associated with sensitive topics can involve emotional risks, both negative and positive, for participants (Liamputtong 2007, 2020). Researchers who empathize with the experiences they are investigating can also be affected (Copes et al. 2018). For example, during photo-elicitation interviews with women with sexual dysfunction, there was a high probability that they would experience discomfort or emotional distress from the questions asked, or from raising unpleasant experiences they had had, which included marital problems, sexual abuse, or domestic violence. When this happens, participants can stop responding, and episodes of temporary distress have been reported in research studies after participants reflected on their previous devastating histories (Campbell et al. 2010). When this occurs, researchers need to discontinue the conversation, stop any audiotapes, and offer a break or end the interview. Explanation of the possibility of such risks must occur before starting any interview. Risks about potential psychological risks need to be clearly stated in participant information sheets and given to participants before an interview begins. In this study, some women cried during the photo-elicitation interview when talking about their experiences, feelings, and needs. A few women paused the interview, but none withdrew from the study. One participant contacted the primary researcher a few weeks after her interview because she had started to think aloud about it. After many years of sexless marriage, hating sex and feeling so disgusted with it, she felt something was not right with her responsibility as a wife and for her own sake to feel pleasure out of it. She was feeling depressed and needed help. She agreed to seek treatment from a recommended nearby clinic. Information about available counseling support and referral to the free government counseling services in a convenient area was provided at the interview and included local specialists and clinics with their relevant charges. Positive consequences are also possible from photo-elicitation interviews as they provide opportunity for self-reflection. For example, in this study, women were able to think, discuss, and express their expectation about sexuality in the interviews, a topic that is usually taboo in their home country (Copes et al. 2018; Muhamad et al. 2019). The inclusion of images in the interviews enabled women to communicate when they had been unable to find words to express themselves or felt too inhibited to speak out loud. Participants in research studies have been found to derive greater benefit from participation in studies that provided opportunity to reflect and to talk about an issue important to them. Researchers who were nonjudgmental and empathetic facilitated perceived participant benefit (Wolgemuth et al. 2015). In our study, we also found that women used the opportunity of the photo-elicitation interview to seek advice, and that the second interview seemed to be important to developing rapport and trust. At the end of the photo-elicitation session, one woman simply asked the following, “What would be your immediate advice?” while others sought reassurance and hope: “Actually what is my problem? Is it real?” and “What should I do?”

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How Did Photo-Elicitation Enhance Findings?

The 23 Malay women who shared their stories, views, and understandings of their sexuality and lived-experiences with sexual difficulties and dysfunction in photo-elicitation interviews ranged from young to middle-aged. They differed in socioeconomic and educational status as well as in the type of sexual difficulties or dysfunction they experienced. Most came from diverse socioeconomic groups. It suited most participants (17 out of 23 women) for the photo-elicitation interviews to take place on the same day. These interviews where usually shorter and yielded less data than those photo-elicitation interviews that were deferred till later in the month (30–45 min compared with 45–60 min duration). This chapter demonstrates the strength of photo-elicitation interviews by showing how five of the women in the study were able to use this approach to explain their experiences of sexuality, something that they had found difficult to express with words only.

4.1

Meanings of Sexuality and Its Changes

For most women in this study, sexuality meant sexual intercourse and the physicality of the sex act (Muhamad et al. 2016, 2019). The women tended to use polite words to describe sexuality such as “bersama” (together) and “buat tu” (doing that) when describing sexual intercourse (SI). Describing their choice of photographs required the women to “think aloud” and so helped them to explain things more clearly. This process empowered the participants to take charge of their experiences and at the same time gave them control of their interview (Bates et al. 2017). The use of photographs also helped them to make the researcher understand what they really meant. Many women chose this photograph (Photo 1) to elucidate sexual intercourse and physical intimacy, but their descriptions were unique to their own experience.

Photo 1 Sexual intimacy/ intercourse

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4.1.1 Participant 1: Aisya Aisya told that only this photo (among the 35 photos provided) could explain well how she saw sexuality when she recalled an intimate memory with her husband, Sexuality means the sexual relationship between a man and a woman. . . kind of intimate relationship or special relationship. A loving relationship. You can see the husband and wife in this photo looks intimate, like when I look at my husband with loving gaze, we communicate lovingly. . . such in romantic peaceful situation that most of the time leads to intercourse.

4.1.2 Participant 2: Linda For Linda, who in her early 40s started to have very low sexual desire and difficulties in achieving orgasm, the photograph helped to explain how her meanings of sexuality had extended according to her marital needs and goal of life. Unfortunately, she lost interest in sexual intercourse due to physically and mentally tiring work in her office and at home while concurrently pursuing tertiary study. She defined sexuality from her own experience with confidence although she knew she was unable to achieve it. Sexuality is what we need just like eating rice. Our need for sex. . . our need for satisfaction and offspring. This is the ultimate goal of my relationship with my husband in this marriage. It is good for both of us physically and emotionally.

The beauty of the photo-elicitation method is that it allows for broader visual representation by participants and permits them to raise more issues than might be expected from Asian women who live in a shy female culture. Suria is a 44-year-old teacher who self-reported as having total loss of desire and arousal that started when her husband began to focus on his high-level studies, lab work, and work performance. She described it as not a “happy year” when there was hardly any sexual intercourse. Sexuality for her was happy years together as Suria shared her story in the first in-depth interview: We do it (sexual intercourse) all the time, every day, any time we need. I mean the sexual activities are always leads to intercourse. To prove we are actively doing that, we do not shy talking about that. We are not shy doing it all the time. Seriously, I never think sex is a responsibility. Meaning that we enjoy it together without anyone forcing us. It is just like human basic instinct and needs.

In the second interview using the photo-elicitation method, Suria chose Photo 2 to expand her argument. Photo-elicitation empowered her to actively engage in her experience and allowed the researcher to see her perspective and make it real. It is believed she had a broad meaning of sexuality that was increasing her frustration with her current situation as the sexual responses of both partners did not work in the same way that they had before. Full of happiness. Friendship is part of it. Perhaps to other people, it is not something special, but we feel “Wow.” Sometimes we just ‘let loose’ as you can see here. We just feel happy about it. We do not think about what other people say, right or wrong. Having sex, yeah, something pleasurable, and intimacy as well. Only both of us know, the whole world does not know.

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Photo 2 Happiness together

However, this meaning of sexuality had changed for her since she had developed sexual dysfunction. She no longer experienced pleasure, and in the current phase, sexuality had become a responsibility rather than fun.

4.1.3 Participant 3: Zaini Zaini had developed vaginismus (a spasm of the muscles surrounding the vagina which leads to failure of penile penetration and painful sexual intercourse) as a result of past traumatic experiences. In her early 30s at the time of the interview, Zaini had worked as a teacher for almost 10 years. Vaginismus had been an incidental finding when Zaini presented to an infertility clinic after being unable to conceive following her happy marriage more than a year earlier. In the photoelicitation interview, unlike other participants, Zaini chose to use abstract type of images rather than photographs depicting real people. These kinds of photos initiate her to recall more on her past experience and enable her to elaborate further on the meanings of her sexuality, the changes that occurred after marriage, and the complexity of explaining her feelings once she experienced sexual dysfunction. This strategy opened a compelling new avenue for the selection of the photos to be used in such research in the future especially when participants are dealing with bad experiences in the past that lead to current phenomena and generate moderate to severe emotional consequences. Zaini spoke about her views on sexuality with tears in her eyes. In the first in-depth interview without photo-elicitation, she viewed sexuality as the physical intimacy between husband and wife. When she married, Zaini was very surprised to learn that she was expected to engage in sexual intercourse with her husband. She had understood sex as just involving touching and cuddling to show love to each other. While Zaini’s knowledge of sex increased slowly, she still did not engage in intercourse. Zaini explained her situation well by choosing two photographs (Photos 3 and 4), which she said depicted herself. For Zaini, sexuality had become the darkness of her life. In one photograph (see Photo 3), Zaini saw herself surrounded

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Photo 3 Darkness

by colorful things that represented the pleasurable sensations that other women experience and that she does not. She said that she had failed even to give her husband the chance to penetrate her. Darkness has shaped her life until now; she assumed the same facial expression shown in the photograph. To explain more about her condition and the link between the difficulties she experienced in her sex life and in seeking help for her vaginismus and infertility, Zaini chose another photo (Photo 4). Now she expressed darkness in a slightly different meaning apart from her sexuality experience. Bad people around her were one of those. She expressed as below: Can you see me wondering in my own darkness?. . . And I am alone. The lights behind me are the ray of hope. . . My hope for the future. That is means I try to seek for lights . . . It just the lights are so far to be reached and the lights are very vague. . . while dark trees are people surround me whom I cannot trust.

This example demonstrates that a photograph can lead to a vivid recall of the past, especially if the photograph triggers a personal attachment to something or someone in an intimate way. Images can stimulate a person’s memory in unexpected ways that give deeper insight than can be gained through an in-depth interview, such as in the first interview session with Zaini (Berger 1992).

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Photo 4 Find lights for life

4.2

Complex Feelings and Emotional Consequences

Malay women with sexual dysfunction or difficulties (FSD) experienced a variable intensity of emotional effects, which occurred according to their own degree of selfcoping, and their husbands’ acceptance and support. These women experienced painful feelings, repetitive thoughts, and a few negative reactions. Boredom set in if intercourse occurred frequently, mainly among those experiencing impaired sexual desire. Panic, and fear of polygamy or divorce, arose when they failed to satisfy their husbands sexually. What concerned them most was the failure to fulfil their religious role of serving their husbands sexually, causing them to feel guilt and distress. Linda’s experience with sexual dysfunction was dominated by her concern that the failure to fulfil her religious role of serving her husband sexually might lead to polygamy or divorce. Although the meanings of sexuality did change between the story she told in the in-depth interview and her photo-elicitation interview, the latter revealed richer data. Linda’s lack of sexual desire limited her ability to meet her own high expectations in terms of serving her husband. She felt afraid. When asked further, she explained that she was afraid that her husband was not satisfied by their sexual relationship and was bored with it. However, it was only in the photo-elicitation interview that the extent of her fear was understood by the researcher. She chose a photograph (Photo 5) to show how every night she became like the woman in this photo.

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Photo 5 Afraid of sexual intimacy

Every night I feel phobia, “Does he want it again?” He wants me always to be prepared, to be like moths (giving services like prostitute) every night. How can I do this when I don’t have desire, I hate sex? One or two days is okay, but if it occurs every night, this is what happens to me.

Linda’s second photographic choice (Photo 6) was intended to show how perplexed she felt in her private space. A real problem for Linda was that she suffered in silence. The people around her were unaware of her problem. Her sexual dysfunction affected her psychologically, and the photograph she chose was able to portray her untold story visually in a way that her words could not. I feel so muddled, only God knows it, the feeling as if I want to run away, because I was not able to give him the service, we actually want it. It is really fun. Where is our right for fun? It goes away. I feel blur. I do cry when perform my prayer. I release it by crying. This is my main concern. now.

4.2.1 Participant 4: Suria For Suria, the happiness of marriage she expressed when asked about the meaning of sexuality for her in the in-depth interview was changed by her experience of FSD. She had become sad with how it had affected her relationship with her husband. She was able to illustrate her emotional feelings by choosing a photograph in the photoelicitation interview (Photo 7): From one point of view, my relationship looks good. . ., like beautiful scenery. . ., meaning the rest are good. Only when it comes to sexual intercourse, it becomes dusk and dark . . .because I don’t get to enjoy it. My feelings are. . . didn’t he love me? It is like my husband is selfish, not helping me to gain it back. I feel I no longer beautiful. I hope it will shine again to make this land (sexual intercourse) beautiful again.

4.2.2 Participant 5: Huda In the last example, we share how photographs were able to convey Huda’s emotions, after experiencing loss of desire and arousal just after marriage. In the first interview, Huda was reluctant to explain her emotions, although her

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Photo 6 Muddled feeling

Photo 7 Contrary story

difficulties in telling her story were apparent. She spoke little and tried to hide her emotions as much as possible. Fortunately, Huda agreed to take part in a photoelicitation interview. She immediately chose two photographs to explain her sadness and what occupied her mind. She had tears in her eyes as she told how she had married a widower. In Malay culture, this may view her as taking someone else’s husband. Huda was acutely aware of these views and at the same time concerned that her sexually experienced husband could compare her sexual performance with that of his first wife (Photo 8). I am truly sad. Why am I the one who gets this illness? Sometimes it comes across my mind. All other women are okay, why do I not feel it? So unhappy. I feel like. . . despair. I don’t know what to do. I always think why me? Why me? And why me? It occurs to me. . . thinking about . . .like prostitute, they can feel it, why not me? Our relationship is legal. I just don’t know.

When talking about the second photograph she chose (Photo 9), she continued to give reasons for her feelings.

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Photo 8 Sadness

Photo 9 Unachievable

This is me. I really want that thing (pleasurable sex) but could not reach it. Unachievable. I want to be touched lovingly and hugged by him. But I don’t feel anything right now in my sexual relationship. I dislike it. I feel bored. I really don’t think of being together. My mind is sometimes empty, but most of the time the problem disturbs my mind. I’m sad.

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With photo-elicitation, Huda was able to get the researcher to walk in her shoes, to feel her pain, and to understand her hope.

5

Conclusion and Future Directions

Photo elicitation has come a long way from the early days of cuneiform when visual images were used to represent data. Despite roots in the field of sociology where qualitative research dominates, photo elicitation offers much to empirical research in public health, especially in areas related to women that are culturally sensitive, such as sexual dysfunction. This is because photographs serve dual roles: They function as evidence of research undertaken and serve as a mediator between the researcher(s) and the experiences a participant shares, which can be preserved and relived. This chapter has traced the history and previous usage of photo elicitation and shared a case study of research to illustrate how photo-elicitation was used, and ethical issues related to its use, and examples were provided to demonstrate how it enriched the study, which addressed a personal and culturally sensitive issue. The changes brought by technology mean that people today construct meaning through multimodal visual communication, and so it is timely for researchers to adopt photo elicitation in their data collection tools. Photo-elicitation can reveal new insights into research data for researchers by enabling participants to express themselves more fully. Photo-elicitation can build bridges across cultures and gender perspectives in ways that show how personal narratives and realities coexist.

Appendix A Arts-Based Guide For drawing participants: • The next section is a bit different from the one we have gone through. For this section, I will ask you to complete drawings (at least 3). Please know that you do not have to be an artist; all I ask is that you do the best you can. Just like the question in the interview in particular your experience living with sexual dys function. There are no right or wrong answers, or in this case images. Any image you create is simply an expression of your feelings and thoughts. – For the first image(s): Can you draw something in your mind, the sexuality learning experience you have gone through? – Second image(s): Can you draw how sexual difficulty has made you feel in day to day life including experiencing sexual pleasure? – Third image(s): Can you draw how your relationship with your husband has made you feel in day to day life?

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Appendix B Example of a Specific Consent Form CONSENT FORM Research topic:

Investigators:

A signed statement of agreement to participate, as follows: I have read (or, where appropriate, has been read to me) and understood the participant information statement and consent form, and any questions I have asked have been answered to my satisfaction. I voluntarily agree to take part in this study (please ‘√’ one ):

In-depth interview alone In-depth interview and photovoice method In-depth interviews and photo-elicitation method In-depth interviews and drawing method and also agree to : audio-recording note-taking I understand that, even though I agree to take part in this project, I can withdraw from the study at anytime, up to within four weeks following the completion of my participation in the research. Further, in withdrawing from the study, I can request that no personal information of mine can be used. I agree that research data provided by me or with my permission during the project may be included in a thesis, presented at conferences, and published in journals, on the condition that neither my name nor any other identifying information is used. Name Of Participant (block letters):_______________________________________________

Signature:_______________________________

Date:_____________________

Name of Investigator (block letters):_______________________________________________ Signature:_______________________________

Date:_____________________

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Appendix C Example of a Publication Consent Form Patient’s Material Publication Consent Form Signature Page Research Title: Researcher’s Name: To become a part this study, you or your legal representative must sign thsis page. By signing this page, I am confirming the following: n

I understood that my name will not appear on the materials published and there has been efforts to make sure that the privacy of my name is kept confidential although the confidentiality is not completely guaranteed due to unexpected circumstances.

n

I have read the materials or general description of what the material contains and reviewed all photographs and figures in which I am included that could be published.

n

I have been offered the opportunity to read the manuscript and to see all materials in which I am included but have waived my right to do so.

n

All the published materials will be shared among the medical practitioners, scientists, and journalist worldwide.

n

The materials will also be used in local publications, book publications and accessed by many local and international doctors worldwide.

n

I hereby agree and allow the materials to be used in other publications required by other publishers with these conditions:

n

The materials will not be used as advertisement purposes or as packaging materials.

n

The materials will not be used out of contex – i.e.: Sample pictures will not be used in an article which is unrelated subject to the picture.

Patient Name (Print or type)

Patient I.C No.

Patient Initials or Number

Patient’s Signature

Name and Signature of Individual Conducting Consent Discussion

Note:

i)

Date (dd/MM/yy)

Date (dd/MM/yy)

All subject/patients who are involved in this study will not be covered by insurance.

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Appendix D Example of a patient’s Agreement for Hiring the Camera Form

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Teti, K. M., Bauerband, L. A., Rolbiecki, A., & Young, C. (2020). An exploration of apparel and well being among transmasculine young adults. Journal of LGBT Youth, 17(1), 53 69. https:// doi.org/10.1080/19361653.2019.1611519. Ussher, J., Hawkey, A. J., Perz, J., Liamputtong, P., Sekar, J., Marjadi, B., Schmied, V., Dune, T., & Brooke, E. (2021). Genrder affirmattion and social exclusion amongst trans women of color in Australia. International Journal of Transgender Health. https://doi.org/10.1080/26895269. 2021.1947432. Wagner, J. (2011). Visual studies and empirical social inquiry. In E. Margolis & L. Pauwels (Eds.), The SAGE handbook of visual research methods (pp. 49 71). London: SAGE. Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369 387. https://doi.org/10.1177/ 109019819702400309. Westall, C., & Liamputtong, P. (2011). Motherhood and postnatal depression. Dordrecht: Springer. Wilkin, A., & Liamputtong, P. (2010). The photovoice method: Researching the experiences of aboriginal health workers through photographs. Australian Journal of Primary Health, 16(3), 231 239. https://doi.org/10.1071/PY09071. Wolgemuth, J. R., Erdil Moody, Z., Opsal, T., et al. (2015). Participants’ experiences of the qualitative interview: Considering the importance of research paradigms. Qualitative Research, 15, 351 372. https://doi.org/10.1177/1468794114524222.

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Priya Vaughan, Ade`le de Jager, and Katherine M. Boydell

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Background: Social Inclusion, Psychosis, and Arts Based Methods . . . . . . . . . . . . . . . . . . . . . 3 Body Mapping with Young People Experiencing Psychosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Inclusion, the Rights of Young People, and Body Mapping Psychosis . . . . . . . . . . . 5 Space . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Voice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Audience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Influence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter reports on the Keeping the Body in Mind body mapping project in which young people with psychosis created body maps to reflect upon, and creatively represent, the relationship between mental and physical health. Body mapping is an arts-based method ideally suited to equitable, participant-led research processes and which has the potential to foster social inclusion. In this project, increased social inclusion was evident during both the research creation and dissemination stages. Using Lundy’s framework for the participation of children and young people, this chapter explores how the project supported social inclusion via deep engagement with the views and voice of research participants.

P. Vaughan · K. M. Boydell (*) Black Dog Institute, Randwick, Australia e mail: [email protected]; [email protected] A. de Jager Adèle de Jager Clinical Psychology, Sydney, Australia © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_63

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Keywords

Body mapping · Psychosis · Arts-based research · Knowledge translation · Young people

1

Introduction

This chapter considers the inclusionary impacts and outcomes of body mapping – an arts-based research method – undertaken with a small group of young people with psychosis as part of the Keeping the Body in Mind (KBIM) body mapping project. It examines the relationship between psychosis and social exclusion, and the capacity of arts-based methods to address this. The KBIM body mapping project and its outcomes are examined through the lens of Lundy’s framework for the social inclusion of children and young people (2006). The framework focuses on enabling youth to share their views on matters relevant to them. The authors argue that body mapping – as a method focused strongly on finely grained engagement with participant views and experiences – fosters social inclusion in both the creation and dissemination stages of research.

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Background: Social Inclusion, Psychosis, and Arts-Based Methods

Social inclusion – such as engagement with community and support-networks, fulfilling work, and access to creative and other activities – results in better health outcomes for those with mental ill health, including those with psychosis (Stain et al. 2012; Wilson and Sharpe 2017: 40). The development of psychosis correlates with diminished social inclusion, including in the arenas of productivity and social integration (Killaspy et al. 2014: 153; Turner et al. 2017: 195). The reduction of social inclusion may result from both the symptoms or health impacts of psychosis and social responses to the condition. For example, a characteristic of psychosis is a reduction in an individual’s social cognition and social functioning, which may have repercussions in terms of their social inclusion (Gardner et al. 2017: 478). Likewise, fear, stigma, and lack of knowledge about mental illness may result in the exclusion of individuals with psychosis from both their immediate community, and society at large. For example, Gardner et al. report that, in the year prior to completing the second Australian National Survey on Psychosis, 69% of respondents had not undertaken a social activity, “. . .with 43% attributing stigma as a barrier” (2017: 879). Research demonstrates that people with psychosis positively benefit from social inclusion in tangible ways including experiencing greater wellbeing (Gardner et al. 2017: 879) and better recovery outcomes (Berry and Greenwood 2015: 153). Social inclusion is particularly important for young people with psychosis who are dealing with their mental health during a life stage characterized by identity formation and a transition to adulthood (Berry and Greenwood 2015: 153).

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Various strategic interventions to combat the social exclusion of those with mental ill health have been mooted (see, for example, Merton and Bateman (2007) and Department of Health and Ageing (2009)). Creative and performing arts-based interventions have been among those established to cultivate and maintain social inclusion for this cohort. Although reporting on relatively small participant groups, various evaluative studies have found that participation in art activities, programs, and performances can enhance feelings of social inclusion for participants with mental ill health, helping them to feel increased social connection and acceptance. This includes interventions specifically created for people with mental illness, as well as programs offered to all community members regardless of health status (Twardzicki 2008; Secker et al. 2010; Swan 2013; Guta et al. 2014; Wilson et al. 2014; Wilson and Sharpe 2017). Perhaps inspired by the positive outcomes associated with arts-oriented interventions, and in acknowledgment of the need to expand academic conceptions regarding ways of knowing (see, for example, Eisner (2007)), a growing number of researchers have utilized arts-based research methods in studies undertaken with people experiencing mental illness. Arts-based research methods are favored because they have the potential to be empowering, enjoyable, and inclusive for participants, and can elicit richly textured qualitative information that traditional methods of research often fail to garner (Boydell et al. 2016: 682–683; Lenette 2019: 28). In addition, arts-based research methods have also been acknowledged as serving agendas connected to social inclusion. As Boydell et al. have observed, “arts-based research is a powerful method through which to advance social inclusion and justice by empowering and engaging vulnerable individuals in a dialogue. . .” with researchers, health professionals, policy-makers, and members of the public (Boydell et al. 2017: 298). A handful of small-scale studies have successfully used arts-based methods in research undertaken with young people and young adults with psychosis. For example, Boydell and colleagues used digital story telling (DST) to learn about the lived experiences of nine young people with psychosis living in a rural community in Canada, with the aim of fostering social inclusion and addressing potential power inequities latent in research procedure (Boydell et al. 2017: 298– 301). Participants reported that the process of creating stories could be an emotional and creative challenge but was ultimately gratifying (2017: 301–302), leading the research team to conclude that DST was an equitable, participatoryresearch method that enabled participants to identify and explore research issues that were important to them (Attard et al. 2017: 302). Drawing on a different artsbased method, Attard et al. combined creative drawing with semi-structured interviews to discover how 10 young adults had adapted after their first episode of psychosis (2017). The research team reported that the creation and consideration of their drawings aided participants to reflect deeply about their own experiences, enhancing the content and detail offered during interviews. They noted, “the reflective and elaborative quality of the verbal content was striking, particularly when compared with other qualitative work with young people, and people with psychosis” (2017: 84).

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Elsewhere, arts-based methods have been used to disseminate, and translate, knowledge about the experiences of young people with psychosis in evocative, engaging, and compelling ways. Boydell and team report on the creation of a research-informed dance expressing research findings regarding pathways to care in first episode psychosis (Boydell 2011; Boydell et al. 2015). Likewise, Gladstone et al. consider a project in which a small group of young people who had undergone a first episode of psychosis, produced a painted mural reflecting on this experience (Gladstone et al. 2012). Baker et al. report on a youth-led research project exploring the relationship between cannabis use and psychosis, in which integrated knowledge translation was used to enable youth peer researchers to produce creative outputs for dissemination including via digital story-telling, poetry, and video media (Baker et al. 2015). In these projects, arts-based knowledge translation provided ethical, aesthetic, creative, and intellectual opportunities, and challenges, for researchers and participants. This chapter focuses on a research study that used the arts-based method of body mapping to explore participant experiences of Keeping the Body in Mind, an intervention focused on the physical health of young people with psychosis. The research project utilized arts-based methods as both a mode of research and knowledge translation. The remainder of this chapter focuses on the use of body mapping to facilitate social inclusion for young research participants. This chapter begins with a brief overview of the research project and the body mapping process, followed by an exploration of the project’s outcomes viewed through Lundy’s framework (2006) of Space, Voice, Audience, and Influence.

3

Body Mapping with Young People Experiencing Psychosis

The Keeping the Body in Mind (KBIM) body mapping project focused on the intersections between bodily and mental health in the management of a psychotic disorder. It sought to gather detailed, qualitative information about the experiences of young people living with psychosis who attended the Bondi Centre, a community health service center in Sydney (New South Wales, Australia) (Boydell et al. 2018: 241). Evidence shows that people with psychosis have greater ill health, including higher rates of obesity and increased premature mortality rates, than those without psychotic disorders (Morgan et al. 2012: 749; Shiers and Curtis 2014; Curtis et al. 2016). Responding to this, the Bondi Centre offers physical health and lifestyle interventions alongside customary psychiatric services and supports. The 12-week program, Keeping the Body in Mind, is an “. . .intensive. . .multidisciplinary lifestyle intervention that aims to reduce risk of cardiometabolic disease in youth with psychosis” offered by the Bondi Centre. The intervention is designed to be implemented when young people experiencing first episode psychosis commence use of antipsychotic medication. The intervention offers information, training, and support regarding health, exercise, and diet (Boydell et al. 2018: 240–241). The KBIM body mapping project aimed to gather qualitative information about the experiences of young people who had participated in this program, focusing

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particularly on their understanding and experience of the relationship between physical and mental health. The project employed body mapping as its core research methodology. Body mapping is an arts-based research method that involves tracing around a person’s body to create a life-sized outline. This outline is then drawn, painted, collaged, or written upon in a contemplative and creative process intended to assist the maker in reflecting upon, and expressing, their personal and embodied life experiences (Gastaldo et al. 2012; De Jager et al. 2016). Body mapping was deemed an ideal method for this project for a number of reasons. First, body mapping has, historically, been used in projects focused on social justice, political activism, and advocacy (De Jager et al. 2016). As such, it is a method which has the potential to empower, and to acknowledge the expertise of, participant-makers. This renders body mapping an appropriate method to undertake with participants who are potentially vulnerable, or who have experienced marginalization or stigma (Boydell et al. 2020). Further, in acknowledging participants as holders of valuable knowledge, and indeed, experts regarding their own lives and experiences, body mapping processes operate to reduce inequities explicit, and implicit, in the research process (De Jager et al. 2016; Boydell et al. 2020). Body mapping was also appropriate in terms of the data the project sought to elicit; body mapping, like other arts-based research methods, fuses the artistic and imaginative impulses of the creative, visual, and performing arts with the rigor of scientific investigation (Cole and Knowles 2008). In this way, body mapping has the potential to generate research data which can capture “. . .complex, sometimes difficult to articulate, ideas and experiences” (Boydell et al. 2020). Also, as a creative and expressive mode of data generation, although not intended to be art therapy, body mapping can have beneficial therapeutic effects for participants. These include feelings of empowerment, pleasure derived from art making, and positive outcomes associated with having the opportunity to represent and share life experiences in a supportive atmosphere (see, for example, Nöstlinger et al. 2015: 48; Boydell et al. 2018: 252). This therapeutic dimension is important, as it has the potential to offset any stress experienced by participants being asked to reflect upon, or represent, distressing events related to their experience of psychosis. The research team’s interest in the interconnections between physical and mental health also made body mapping an ideal data generation tool. Body mapping takes a person’s body as the starting point, and the central site, through which to explore and reflect upon their engagements in the world. As such, it produces data which reflects embodied knowledge and experience (De Jager et al. 2016). Finally, not only do body maps have the power to generate rich data, they can also be used in knowledge translation processes. As indicated above, visual and other creative art forms are increasingly drawn upon in the dissemination of knowledge due to their ability to attract audiences, express experience evocatively, and generate discussion (for an overview of relevant literature, see Boydell et al. (2012))). The project recruited six young people diagnosed with first episode psychosis, each over the age of 18, who had participated in the Keeping the Body in Mind program. Ultimately, five participants created body maps and accompanying narrative statements, with one individual withdrawing after the initial workshop due to ill

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health. Participants were guided through the process of creating a life-sized body map across four 2.5-hour workshop sessions (Boydell et al. 2018: 243–244). A structured workshop format was followed as developed by Solomon (2007) and Gastaldo et al. (2012). Each workshop had specific aims, with prompts to reflect upon and create certain elements of the body maps in a particular order. For example, the outlines of participant bodies were created early in the process, with participants encouraged to reflect on a posture that represented the relationship between their physical and mental health. Subsequent sessions dealt with elements such as symbols and slogans used to adorn maps. While the workshops were facilitated and guided by the research team, participants had input into the process and provided feedback in an ongoing manner. For example, a breathing-focused mindfulness exercise was noted to be helpful in orientating participants to think about their bodies prior to commencing their map. Participants noted that the provision of instructions across workshops was helpful in decreasing anxiety, as they were initially unsure what body mapping involved. Following the workshop sessions, each participant was interviewed about the process of creating their body map and together with research team-member constructed a one-page narrative description of their body map (called a testimonio). Full details of the findings of this stage are reported in Boydell et al. (2018). The completed body maps were exhibited at an art installation held at the National Institute of Dramatic Art (NIDA) in Sydney (New South Wales, Australia). All participants chose to exhibit their body maps and a number attended the exhibition. Thus, participants were included in public viewings of their body maps and were able to observe how others engaged with their creative work. People attending the exhibition were encouraged to leave feedback, which they did via postit notes provided. Others undertook in-depth interviews about their viewing experience (Boydell et al. 2021). Using Laura Lundy’s model for listening and responding to the views of young people, this chapter now reflects on the ways in which the KBIM body mapping project enabled social inclusion for participants. The authors acknowledge that the project was undertaken with young adults, rather than children (e.g., over 18), but they feel that the designation of young people addressed in Lundy’s paper is relevant to the research cohort. Here, social inclusion was facilitated via full engagement with the views of young people (Lundy 2006). It should be acknowledged that Lundy’s model was not utilized when designing the research project. However, the need to address, and promote, “. . .social inclusion and social determinates of health and wellbeing” was a central value underpinning the project and its research processes (Boydell et al. 2018: 242).

4

Social Inclusion, the Rights of Young People, and Body Mapping Psychosis

Lundy’s framework is concerned with facilitating the input of young people in various social processes, actions, and activities. The influential framework responds to the UN Convention on the Rights of Children (UNCRC), specifically Article

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12 which provides children with the “right to express their views and for these to be listened to and given adequate weight” (2006: 927–928). The framework was created in response to an evaluation that found that young people in Ireland did not feel they were being adequately consulted or listened to, despite Irish Government commitment to adhere to the UNCRC (2006: 927–928). The framework takes Article 12 as its starting point, but also draws on other instruments such as the Universal Declaration of Human Rights (2006: 932). Lundy’s proposed framework hinges on four central tenants: Space, Voice, Audience, and Influence. These are defined as follows: “Space: Children must be given the opportunity to express a view. . .Voice: Children must be facilitated to express their views. . ..Audience: The view must be listened to. . ..Influence: The view must be acted upon. . .” (2006: 933). Lundy’s model has clear implications in terms of fostering social inclusion for young people; having the right to contribute your point of view, and to have this view attended to, is core to an individual’s active participation in, and contribution to, their society or community (Australian Social Inclusion Board 2010; Duvnjak and Harris 2018). In view of this, the remainder of this chapter uses Lundy’s framework to explore the manner in which the KBIM body mapping project facilitated meaningful engagement from young participants with psychosis, thus fostering social inclusion.

5

Space

Lundy defines Space as the proactive creation of safe and inclusive opportunities for young people to share their views (2006: 933–934). In conducting the KBIM body mapping project, the research team sought to create both a physical and psychological safe space where participants could mindfully, and at their own pace, work creatively and share their ideas and experiences, and have these received respectfully without judgment. The first step to creating this space was to identify a venue to hold the body mapping workshops. A primary concern was to find a place that was inspiring, facilitated creative thinking, and importantly was without negative or stigmatizing associations. For this reason, the team decided against using any medical settings. Eventually, the Bondi Pavilion was selected. The Pavilion is located at Sydney’s iconic Bondi Beach and operates as a cultural hub hosting diverse creative, musical, and theatrical events and activities (Boydell et al. 2018: 242). Workshops were held in a large, light-filled room that allowed participants ample space to make their maps. The venue also allowed for wandering outside the workshop room into the surrounding open spaces. Creating a safe and inclusive emotional space involved establishing good relationships between the research team and participants. Each workshop began with a lunch provided by the research team and shared by participants and researchers. This allowed for “. . .informal discussion and relationship building” between all involved (Boydell et al. 2018: 244). Workshops then commenced with a series of guided mindfulness exercises intended to help participants feel safe, centered, focused, and able to reflectively, and calmly, engage with the body mapping process. The body mapping workshops were facilitated by the research team; however, researchers worked to make sure the participants had a great deal of decision latitude in terms of

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the experiences they represented in their maps, and how they depicted these experiences. It was important to make clear that there was no right or wrong way to make a map. A member of the research team was an artist and was available to consult with participants about the creative process, at their request. The research team was on hand to assist and talk through ideas, but were conscious never to police participants in terms of what they wished to represent, and how they chose to visualize this. Further, the research team conceptualized the methodology of body mapping as providing a safe space for participant expression. As outlined above, body mapping is an empowering research tool, which privileges and prioritizes the voice and view of makers, acknowledging them as experts regarding their own lives and experiences. The positive feedback offered by participants regarding the body mapping process indicates the team were successful in creating a safe space for young participants to express themselves freely (Boydell et al. 2018: 255).

6

Voice

In Lundy’s framework Voice denotes enabling young people to express their views freely without control or punishment, within the safe Space discussed above (2006: 935). Lundy also notes that not all young people feel comfortable expressing their views verbally, meaning that creative and nonverbal methods should be utilized to help young people express their views (2006: 935). The KBIM body mapping project was solely focused on eliciting detailed, qualitative information about the experiences of individual participants, rather than generating data to be transformed into generalized research findings. As described above, in avoiding didactic, narrow directions about what a map should look like, or represent, the research team sought to enable the voice of participants to be both sounded, and listened to. Body mapping is an arts-based activity, allowing participants to express themselves both textually (via the use of written word) and visually (by drawing, painting, or collage). In this way it provides those not comfortable with verbal expression with a means to exercise their voice. Verbal expression was also facilitated during the creation of the testimonio – which is further intended to privilege the views and experiences of participants. Participants were also encouraged to voice opinions about the research process and its outcomes. For example, participants advised the research team that they did not feel they had sufficient time to comfortably complete their maps, and this resulted in a fourth workshop being conducted (Boydell et al. 2018: 244). Participants were also advised that they had autonomy regarding the fate of their maps after workshops were complete, and each consented to their maps being displayed publicly (Boydell et al. 2018: 243). The body maps and their accompanying testimonials stand as evocative articulations of the voice of their makers. Individual maps – and their narratives – are now briefly described. Please note that the names used below are pseudonyms. Tyler’s map (Fig. 1) is joyous and hopeful with the outline of Tyler’s body adorned by vast white wings, his feet standing firm, and arms outstretched as if in exaltation. Bursting free of the chains of depression, paranoia, loneliness, isolation,

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Fig. 1 Tyler’s body map

crime, and drugs, Tyler’s figure is flanked, even buoyed up, by the things that have helped him heal, the bible, church, work, art, friends, community, surfing, and fitness. Tyler sought to create a map that illustrated his hope for the future, and which acknowledges the positive influence of the Bondi Centre in his life. His body

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pose embodies joy, gratitude, religious devotion, and a metaphorical “rising up from the ashes” (Boydell et al. 2018: 246). The map reflects Tyler entering into a new phase where he feels better able to cope with challenges that previously dogged him. As he noted, “. . .it’s not that I don’t have troubles or anything, but it feels like I have broken free from it” (Boydell et al. 2018: 246). Accessing the Bondi Centre gym and visiting and volunteering at his church has helped him stay physically, mentally, and socially healthy (Boydell et al. 2018: 246–247). Nadine’s map (Fig. 2) stands as a vivid depiction of embodied experiences relating to illness, wellness, and being medicated. Graphic blocks of contrasting, highly saturated, colors boarder the map, with Nadine’s body outline rendered by a white line and defined by a shroud-like wash of black. Nadine’s body is depicted with arms extended and holding small weights. Diverse text and symbols fill both the Fig. 2 Nadine’s body map

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colored and monochrome areas of the map, each reflecting and connecting to Nadine’s experience of medication, illness, recovery, and wellness. For Nadine, taking medication leaves her with a sense of apathy and without the energy to undertake pursuits that once brought her joy. Seeking to reflect this, and the alienation, loneliness, and sense of exposure experienced when unwell, Nadine chose to surround her body outline in black. The blocks of color are an evocation of her “road to recovery and happiness” and capture the things, pursuits, and places that have helped her achieve “. . .a balanced life.” These include her dog, music, reading, therapy, television, and peaceful landscapes (Boydell et al. 2018: 249). Nadine has included the phrase “maybe just maybe” on her map, to indicate that while she feels positive and well at present, “. . .at any time, she could have another psychotic episode. . .” and return to that shroud of black (Boydell et al. 2018: 250). Alison’s map (Fig. 3) is engaging in its bright and detailed rendering. Alison’s bodily outline is completely filled, giving the viewer a cross-sectional, almost three-dimension view of the elements – muscle, bone, heart, music, healthy food – that constitute the artist. Alison holds a large pink cat and stands by a bicycle. In the background, a forest, brimming with animals, insects, mushrooms, and more, is sketched in pencil. In creating the map Alison wished to look to the future, rather than focus on difficulties experienced in her past. The lush forest that she looks toward in the map represents her personal growth, while the cat addresses the importance of companionship. The bicycle and healthy food acknowledge the connection between physical and mental health. The map includes the slogan, “Make yours a good self” which Alison chose in lieu of the ubiquitous be yourself. She explained that the latter aphorism is misleading as “I could be terrible and still be me” (Boydell et al. 2018: 250). Lester’s map (Fig. 4) is powerfully minimalist, presenting Lester’s body outlined in blue, one outstretched arm (adorned with a fish) holding a red ventricle heart, the other crooked to nurse a baby. Lester’s left foot kicks a soccer ball. Inscribed in clear text across the center of Lester’s body are the following affirmations: “The Heart Is Not Just A Muscle But A Tool for Great Choices” and “for every dark night there’s a brighter Day.” Lester did not want bright colors or a clutter of symbols to obscure the messages articulated by his map: the blue outline signifies those who are grappling with their mental health; the image of and text about the heart speak to the importance of being guided by your feelings and love; the fish swims up stream showing Lester’s “. . .determination in the face of difficulty”; the baby represents those to whom he is close; the ball shows the positive impact sport has on his mental health; and the remark about a brighter day is a message of hope for the future (Boydell et al. 2018: 247–248). Zayne’s map (Fig. 5) conveys both teaming energy and a sense of balance. Zayne’s outline holds a steady stance, with his two arms crooked, one palm open and facing the sky, the other holding a wand. Numerous slogans surround the outline, including “Your body is your TEMPLE” and “RIVER OF DREAMS.” This river surrounds Zayne’s body outline, flowing. and sparkling with verve. Two small figures dance in diamond-shaped frames by Zayne’s feet, their movement to music clearly evoked. Zayne’s map shows how central a “sense of balance” has been to his recovery, with physical activity core to maintaining this balance. Creative endeavors, including dance, music, artmaking, film, and social connections also help in this quest for

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Fig. 3 Alison’s body map

balance. Zayne depicted himself flourishing a wand to show, as he described, “the magic that is within us, being created by God itself” (Boydell et al. 2018: 250).

7

Audience

Audience addresses the right of young people to have “. . .their views listened to (not just heard) by those involved in decision making processes” (Lundy 2006: 936). In the context of the KBIM body mapping project the team considers analysis and dissemination of the research data core to the process of listening. Drawing on Arthur Frank’s The Wounded Story Teller (Frank 1995), the body maps were

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Fig. 4 Lester’s body map

analyzed using a narrative inquiry framework. This was important as it facilitated appraisal and close consideration of the stories expressed through maps, and in testimonio, in a wholistic manner, without “. . .fracturing the narrative, as often

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Fig. 5 Zayne’s body map

occurs with thematic analysis” (Boydell et al. 2018: 245). This attention to individual stories enabled researchers to attend to the views and experiences of participants in their totality. Further, the research team sought to integrate visual analysis of maps

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into their engagement with participant narratives by drawing on Rose’s (2012) critical visual methodology framework. Dissemination material reporting on research outcomes was, therefore, directed by findings derived from close interpretation of body maps, testimonials, and reflections from researchers regarding the workshopping process. Body maps created by young people participating in the project were ultimately used as tools for knowledge translation. Sharing the maps widely – beyond the sphere of academic scholarship – allowed for a broader audience to engage with the stories they communicate. Alongside being shared at various health-related conferences, the maps were displayed as part of the Keeping the Body in Mind art exhibition held at NIDA in September 2016. The exhibition was conceived to communicate the individual experiences of participants to a wide audience (including policy makers, clinicians, researchers, and the public) in an effective and evocative way. As the body maps created by participants were both information rich, and visually arresting, it was felt that an art exhibition was an appropriate forum for their display (Black Dog Institute and National Institute of Dramatic Art 2016; Boydell et al. 2021). The exhibition also included the work of 26 artists who produced pieces that responded to the maps and their testimonials. Artists created a diverse range of works – including photography, soundscape, installation, and performance – that interpreted and explored the stories, ideas, aesthetic forms, and themes presented in the maps. In this way, the exhibition created an additional audience for the body maps constituted by practicing artists. Putting the body maps in dialogue with these creative and interpretive artworks was intended to foster an extended and immersive viewing experience for audiences (Boydell et al. 2021).

8

Influence

Influence speaks to the need for “due weight” to be accorded to the views communicated by young people and, if suitable, for these views to be acted upon (Lundy 2006: 937). As previously outlined the research team actively responded to the feedback and viewpoints of participants across the life of the research project, including during the workshop and research process. Further, participant discussion regarding their experience of engaging with the Bondi Centre affirmed the positive impact of the Centre (Boydell et al. 2018: 253), supporting the continuation of wholistic programming across the organization. The influence of participants has also been exercised in the afterlife of the project. During the Keeping the Body in Mind exhibition audience members were afforded the chance to share their thoughts about the body maps, and the artworks which they had seen. They were encouraged to leave anonymous written feedback and participate in qualitative interviews following the exhibition (Boydell et al. 2021). This feedback demonstrated the extended influence of participants. Analysis of these materials revealed that the exhibition was well received, with particularly positive feedback offered about participant body maps. The artworks made by responding artists were not as roundly praised, as they were felt to be less clearly communicative

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than body maps. Overall, the exhibition was felt to offer insights into the experiences of young people with psychosis in an open and non-alienating way, and thus had the potential to enhance mental health literacy. Feedback indicated that audience members clearly apprehended the exhibition’s messaging about the connection between physical and mental health and well-being. Further, evaluative materials indicated that the exhibition had the “. . .strong potential for increasing empathy and understanding” regarding the lived experience of psychosis (Boydell et al. 2021). Here, the experiences and views of the young participants (embodied by their maps and testimonio) influenced the attitudes of audience members, often working to destigmatize psychosis. Further, the views expressed by participants during the KBIM body mapping project have gone on to shape the professional practice and priorities of the research team. The affirmations from participants regarding the effectiveness of body mapping as a research, therapeutic, and knowledge translation tool have led the research team to utilize this method across various projects, and with diverse research populations, such as people impacted by disability, anxiety, depression, eating disorders, and substance misuse. These projects include The Big Anxiety Project: Body Mapping Workshop offered as part of the Sydney Science Festival (Hoh 2016; National Institute for Experimental Arts 2016); Landscape of the Mind – an installation presented at Vivid Sydney (Black Dog Institute 2017); Body Mapping in the Galleries held as part of The Big Anxiety Festival (The Big Anxiety 2017); Our Ways to Planning, a research project which used community mapping in collaboration with Aboriginal People with disability (Dew et al. 2019); a pilot study using body mapping with young people undertaking drug and alcohol residential treatment (Macken et al. 2019); and the Women and Body Mapping research project (Boydell et al. 2020).

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Conclusion and Future Directions

Lundy’s model, intended to assist young people to participate meaningfully in decision-making, posits four separate factors that require consideration: Space, Voice, Audience, and Influence. This model has been used to interrogate the way each of these factors operated across the KBIM body mapping project, and how, taken together, they fostered a sense of social inclusion. Thus, it is argued that Lundy’s framework can have pragmatic application in participatory research, beyond engaging with children, to include the participation of young people as well as groups that are typically marginalized, such as people with disabilities, LGBTQI+ communities, and culturally and linguistically diverse groups. In terms of space, researchers must ask themselves: have the views of research participants been actively sought, was there a safe space to freely express their views, and have steps been taken to ensure that all have the opportunity to take part? To acknowledge voice: have participants been provided with the information they require to form a view, do they understand that they do not have to take part, and have they been given a range of options regarding the ways they might choose to express themselves? To

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address audience: is there a process for communicating participant views, do participants know who their views are being communicated to, and does that person have the power to make decisions? To ensure influence: were views considered by individuals with the power to effect change, are there strategies in place to ensure that views are taken seriously, and have participants been provided with feedback explaining the reasons for decisions taken? This line of questioning can help to ensure that the rights and views of research participants are fully considered, and that research and dissemination processes can facilitate social inclusion and participant empowerment. There are numerous potential applications for body mapping as a research and knowledge translation tool. Emerging, and novel, directions for use include the creation of body maps in online and virtual environments (Ludlow 2021; Ticho 2021), and the use of wearable body mapping technologies (Edwards 2021). To the authors’ knowledge, body mapping has yet to be employed in the context of a longitudinal research study, and they believe this is an arena in which the method could be successfully deployed. There is great potential for body maps to provide evocative, and data-rich, insights into the way an individual changes, adapts, or accrues experience, over time. For example, an annual body mapping workshop could prove useful in tracking how a young person with psychosis adapts in the years after their first episode. Beyond this, further investigation and evaluation of body mapping as a research and knowledge translation tool would be fruitful. In particular, research exploring the long-term impacts, and communicative capacity, of body maps for those who create and view them, would further enhance the legitimacy of the method as a mental health research tool.

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Exploring the Use of Body Mapping for Socially Inclusive Storytelling Among South African Women Living with Recurrent Breast Cancer

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Body Mapping: A Brief Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Expanding Representational Possibilities for a Socially Inclusive Research Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Mapping Embodiment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Collaboration Between Researchers and Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Exploring the Use of Body Mapping for Socially Inclusive Storytelling Among South African Women Living with Recurrent Breast Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Conceptual Content . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Tone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 All Populations Equal? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 An Empowering Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter presents an application of body mapping, an innovative participatory arts-based method used in qualitative research to elicit participant narratives about their bodies and life experiences, to women’s experiences of recurrent breast cancer. The use of body mapping has become a powerful method for fostering social inclusion. Its emphasis on nondiscursive communication and embodied knowledge allows participants an opportunity to articulate aspects of their experience that may not be readily accessible via conventional verbal methods. The findings presented in this chapter highlight those features of body mapping that help to expand women’s expression of their breast cancer stories, A. Smit (*) Department of Psychology, Stellenbosch University, Stellenbosch, South Africa e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_64

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thereby offering a more socially inclusive research methodology. The analysis presents examples of creative and embodied forms of knowledge generated through body mapping, such as the visualization of participants’ sources of strength and abstract representations of the self. The sample of body maps presented are derived from the thematic and visual analysis of 12 South African women’s breast cancer stories, which revealed their creative processes and meaning making. The method not only served as a data collection tool but became a method of empowerment for participants. Although body mapping may provide expanded representational possibilities for participants, care should be taken to adjust the method according to participants’ needs, and to provide effective researcher-participant collaboration when utilized among vulnerable populations. Keywords

Visual narratives · Arts-based methodology · Body mapping · Breast cancer · Recurrence · Embodiment · Social inclusion · Narrative · Qualitative research

1

Introduction

Creative methods in qualitative research have grown abundantly in the twentieth century (Coemans and Hannes 2017). Such have contributed to the authentic expression of both the complex realities, as well as the everyday aspects of people’s lives as shared with others (Sabo and Thibeault 2012; Woodgate et al. 2016). Concomitant with this rise in creative methods has been a critical slant against language-based approaches. Scholars have argued that commonly used verbal techniques in the form of interviews and focus groups, even written techniques such as diarizing, have not only been over-used (Bagnoli 2019), but often disregard other important sensory contributions, such visual, spatial and temporal perceptions (Radley 2009; Sharf 2009). Rita Charon (2006, p. 99) critiques verbal-based texts stating that “patients cannot ordinarily just tell in words what needs to be heard about [the body].” As a healthcare professional, Charon (2006) remarks that even subtle bodily cues of patients tend to enhance her ability to provide optimal care. Arts-based methodologies involve making artistic expressions across a wide array of art-forms (e.g., dramatic arts, performing arts, and visual arts), and use a creative process as a way to investigate and understand people’s experiences (Chamberlain et al. 2018). While not guaranteed to yield richer data beyond that which can be generated via more traditional approaches, arts-based methods appear to have special significance for understanding people’s lives, subjectivities, and identities (Bagnoli 2019; Chamberlain et al. 2018). Indeed, the increasing use of arts-based research is highlighting the complexity and multidimensionality involved in both the telling of and our attempts to understand stories about lived experience (Boydell et al. 2012). For example, researchers working from an arts-based perspective argue that this type of knowledge creation offers expanded representational possibilities, most notably because it welcomes a more fully embodied response from research participants

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(Boydell et al. 2012). Therefore, in their capacity to evoke the sensory and “extradiscursive” aspects of lived experience (O’Connell 2013), arts-based research methods are particularly well-suited to exploring individuals’ subjective experiences of illness, such as breast cancer (Collie et al. 2006). For instance, art therapy has helped women with breast cancer reflect on and confront emotional and sensitive issues, such as existential fears and concerns (e.g., Collie et al. 2006; Malchiodi 1997; Predeger 1996; Thibeault and Sabo 2012), and changes in their appearance following body-altering treatment (e.g., Malchiodi 1997; Thibeault and Sabo 2012). Art therapy has also been shown to reduce distress and trauma symptoms for women with breast cancer (e.g., Collie and Kante 2011), and bring about significant improvements in negative emotional states such as anger and anxiety (e.g., Puig et al. 2006). The use of drawing methodologies (e.g., Liamputtong and Suwankhong 2015; Suwankhong and Liamputtong 2016), photovoice (e.g., Frith and Harcourt 2007; Teti et al. 2019), and sculpting (e.g., Sabo and Thibeault 2012) have been applied to explore women’s experiences of living with breast cancer. Although these methods differ, they share the common goal of working in support of open-style interviewing (Bagnoli 2019), thereby extending text-based approaches in innovative and exciting ways (Chamberlain et al. 2018). As will be argued in this chapter, body mapping, an innovative participatory artsbased method, can provide participants with expanded representational possibilities. The discussion is premised on the notion that if researchers are to attempt to understand the subjective experiences of others, participants need to be offered an approach to storytelling that does not privilege words as the primary source of data but includes other forms of knowledge and communication. Such forms make the use of an arts-based approach like body mapping a way to promote research inclusion.

2

Body Mapping: A Brief Background

Body mapping is an innovative arts-based method designed to elicit the creation of life-size human body images using art-based techniques such as drawing and painting (Coetzee et al. 2019; Gastaldo et al. 2012). The aim of body mapping in a research setting is to create a visual story of the phenomenon under investigation by focusing on aspects of people’s lives, bodies, and contexts. Given that the messages often contain highly individualized content (Klein and Milner 2019), the meaning of the visual images can only be interpreted together with the accompanying narratives, or “keys,” describing the symbols, elements, and colors depicted (Gastaldo et al. 2012). Body mapping evolved from the Memory Box Project implemented in South Africa to help women living with HIV/AIDS record their stories as a keepsake for their loved ones (Solomon 2008). In this instance, body mapping was used as a form of group art-therapy during which women could reflect on their experiences. Since its introduction as a form of therapy, body mapping has acquired an extensive repertoire. It has been used as a community development tool (e.g., Ebersöhn 2015; Ferreira et al. 2010), a method of psychological evaluation (e.g., Boydell et al. 2018;

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Ebersöhn et al. 2016; Santen 2014, 2015), and most prominently, in health research (e.g., Coetzee et al. 2019; Devine 2008; Ludlow 2014; Lys et al. 2018; Orchard et al. 2014; Stevens and Le Roux 2011; Wallace et al. 2018; see also De Jager et al. 2016 for a systematic review). In addition, Gastaldo et al. (2012) have developed body mapping as a research tool with a comprehensive facilitation guide, also adapted and applied in the research project with which this chapter concerns itself.

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Expanding Representational Possibilities for a Socially Inclusive Research Methodology

3.1

Mapping Embodiment

Increased attention has been paid to embodied ways of knowing, or “embodiment,” among qualitative health researchers, particularly those with an interest in arts-based methodologies (Botsis and Bradbury 2018; Brown et al. 2011; De Jager et al. 2016; Lynn and Lea 2005; O’Connell 2013; Power 2003; Wills et al. 2016). While a full discussion on embodiment is beyond the scope of this chapter, this section will briefly discuss the suggested ease with which creative expression is able to access embodied dimensions of experience (Chamberlain et al. 2018). Studies among patients with various diseases and impairments have suggested that a focus on bodily experiences and embodied knowledge is important (e.g., Gillies et al. 2005; Lende and Lachiondo 2009; Salamonsen et al. 2012; Tarr and Thomas 2011). Attention to bodily awareness, including features of being human (e.g., ageing, sweating; Brown et al. 2011) and signs and symptoms of disease (e.g., pain, inflammation, redness, a lump, scarring), give rise to “felt” aspects of experience (Power 2003). While participants might turn to the closest available words, phrases, metaphors, analogies, or slogans in an attempt to “match” their experiences linguistically, Brown et al. (2011) have suggested that language inevitably “misses something out” (p. 496). Inarticulable, visceral forms of knowledge are therefore often lost or only partially captured in analyses (Botsis and Bradbury 2018; Brown et al. 2011). By shifting data collection procedures to a creative modality, Botsis and Bradbury (2018, p. 414) contend that participants are provided with “an alternative vocabulary” for articulating their experiences. In particular, in emphasizing the felt immediacy of the body (Brown et al. 2011), a visual mode of representation has the ability to foreground affective realms of life (Botsis and Bradbury 2018; Chamberlain et al. 2018), thereby offering more immediate, contextualized, and multi-layered information about individuals’ experiences that might otherwise be covert (Gastaldo et al. 2018). Body mapping is particularly suitable for foregrounding spatial, affective, and embodied aspects of knowledge (Botsis and Bradbury 2018). Indeed, in their systematic review of body mapping as a health research methodology, Gastaldo et al. (2018) suggest that despite its diversity of application, its creative approach to storytelling enables a better articulation of complex life journeys among participants. The approach is particularly relevant in linguistically and economically diverse

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countries such as South Africa, where participants may not always feel confident expressing themselves verbally. Such has recently been demonstrated by Harries et al. (2019), who used body mapping to explore embodied experiences of reproduction, conception and contraception among South African women. These authors discovered that body mapping was an appropriate method to uncover perceptions and sensory experiences of contraception and commented on the value of gaining multi-faceted knowledge and deeper insight via this method.

3.2

Collaboration Between Researchers and Participants

The second feature of body mapping that is relevant to this discussion is its participatory framework. In a participatory approach, the researcher will attempt to follow the guidance of the participant in the research process (Bagnoli 2019); the emphasis shifts from collecting data from participants, to producing data with them (Mannay 2016). This is extremely important as it allows participants to take on a leading role and direct the contents of the artwork (Bagnoli 2019). The creative process of image production that replaces the traditional interview or observational data, becomes a medium through which participants can “communicate” with researchers about their experiences (Coemans and Hannes 2017). The researcher, in turn, is able to take part in story creation based on the thoughts, feelings and bodily perceptions expressed by the participant. Such a collaborative approach not only mitigates power imbalances that normally exist between the researcher and participant (De Jager et al. 2016; Parker et al. 2018), but allows for an enhanced engagement with the story being produced. The exchange of thoughts, emotion, and experience, Radley (2009) suggests, is conducive to the facilitator and participant becoming “one with the narrative” (see also Hajisoteriou and Angelides 2017). While a participatory framework allows the researcher to engage in the co-creation from the position of a learner, and the participant is considered the expert, it is important for the researcher to adopt a critical reflexive stance whereby his or her own social positioning, and the way in which it impacts the research process, is carefully examined (Bagnoli 2019). Moreover, it is of crucial importance that despite the co-creation and joint interpretation of the visual products in body mapping (Gastaldo et al. 2012), the participant’s perspective and meanings should remain at the forefront and should be distinguished from those of the researcher (Bagnoli 2019).

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Exploring the Use of Body Mapping for Socially Inclusive Storytelling Among South African Women Living with Recurrent Breast Cancer

The research project with which the remainder of this chapter is concerned, explored the multimodal breast cancer stories of 12 South African women living with recurrent breast cancer. The aim of this study was to understand women’s subjective experiences of their illness and the meanings they attached to their

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experiences. Body mapping was employed as one of the methods to engage women’s narratives about their experiences. Body mapping was considered a suitable methodological technique due to the central focus it places on both the body and participant engaging in a creative dialogue that encapsulates personal embodied experiences (Gastaldo et al. 2012). Twelve women with recurrent breast cancer were recruited from an open-access breast clinic, located within a tertiary-referral public hospital in South Africa. Once selected, participants were invited to take part in the research study, which involved interviews, participant diaries (reported elsewhere) and a one-on-one body mapping workshop. Prior to the commencement of the body mapping workshops, a suitable venue (e.g., a private art studio) was secured. A variety of art supplies were purchased, including, inter alia, life-sized paper, paint, markers and color pens, crayons, magazines, scrap paper, scissors, and glue. The original activities outlined by Gastaldo et al.’s (2012) facilitator guide were adapted to suit the aims of the study, as summarized in Table 1. These body mapping activities served as a guide for the creation of the visual stories. Since both audio and visual data were generated, analytical strategies employed comprised of two levels (Gastaldo et al. 2012): the first involved lineby-line coding of audio data, which included the narrated process of creating the body maps and the “keys” describing each element. Semantic codes were given to describe the quotation in question. The second involved a visual analysis of the mapped stories adapted from Skop’s (2016) multilayered inductive approach. Briefly, the visual analysis involved grouping the visual data into three categories: conceptual content, tone, and elements of design. Conceptual content refers to breast cancer-related themes represented by images and words on the body maps. This category included, for example, aspects related to participants’ subjective experiences of having a breast cancer recurrence. Tone refers to the mood evoked through the visual images and words, such as positive and negative experiences or emotions. Elements of design include color value (hue and tone), shape (two-dimensional outlines of objects), form (three-dimensional area and objects through shading), space (affective spaces, i.e., positive or negative spaces on the body maps), and texture. For the purposes of this chapter, the results have been structured according to the visual analysis.

Table 1 Overview of body mapping activities. (Adapted from Gastaldo et al. 2012) Session 1: Breast cancer in your body Exercise 1: Body tracing Exercise 2: Highlighting your grooves and dimensions Exercise 3: Marks in/on the body Exercise 4: Self portrait Break

Session 2: Your breast cancer story Exercise 1: Breast cancer journey Exercise 2: Body scanning for difficulties and strengths Exercise 3: Personal slogan Exercise 4: Your future script Exercise 5: Message to others

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Conceptual Content

The women who took part in the study conveyed their subjective experiences of recurrent breast cancer along three dimensions: the body, self and others. Experiencing bodily changes resulting from cancer treatment, was not a mere physical phenomenon, it included both social and emotional dimensions as well. Their selfperceptions reflected either their immediate context, or that of a past/future self (sometimes in combination). The women’s views of others were mostly futuristically oriented: whether they would be there for their families. Such futures, although uncertain, were visualized as a return to health and their continued presence in the lives of their loved ones. Each of the said themes will be discussed in turn.

4.1.1 The Biological, Social, and Emotional Body Descriptions of women’s own bodies involved a composite of biological, social, and emotional dimensions. With the topic of investigation being a breast cancer recurrence, the immediacy of corporeal body as a biological entity was frequently foregrounded. For example, the superficial scars and visceral invasion of the cancer to various organs were often drawn or painted in. Mastectomized breasts with stitch marks where the staples used to be were commonly visualized, as were areas of inflammation and pain, such as the regional lymph nodes that had been removed. Depicting the various organs to which the cancer had spread (e.g., lungs), and the organs which had been damaged as a result of the toxic cancer treatment (e.g., heart), provided an evocative illustration of the physicality of participants’ experiences. Similarly, blemished skin and hair loss were prominently featured in the body maps. For some, an altered body habitus represented far more than just a physical consequence of cancer therapy: Patricia remarked how she was ashamed of her weight gain and graphically depicted two versions of herself, a thinner (before) and wider (after) version, superimposed on top of one another (Fig. 1). The wider version indicated the weight gain she had experienced following chemotherapy: “. . .and this weight I don’t even have clothes that fits me.” Her physical alteration had a social implication as she had lost her body confidence: “I was proud with my body. When I – when I was with friends or family and I used to take off my clothes, I feel, I felt pretty, but now [. . .] I am ashamed.” Similarly, signs of social discomfort emerged among participants whose bodily difference became a source of ridicule, as Margaret describes: “I just stay at home with family because they understand my situation. Sometimes, when with certain people, they may not say anything to you in person, but the minute they leave you they badmouth you. . ..” Beneath the physical deformities, often lie hidden emotional scars. Such has been the subject of Lucy’s body map. It had at its core, her lasting dissatisfaction with her post-operative bust. Despite 11 surgeries, her breasts were left uneven and deformed and she struggled to accept her appearance: “I said that I don’t want further operations, but I cannot accept the way I look. Disfigured breasts. Ugly!!!” Covering up her scars with an extravagant tattoo seemed the way in which she attempted to conceal her imperfections (Fig. 2). It seemed that her uneven bust had become a daily embodied reminder of everything she had experienced up until that point:

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Fig. 1 Patricia’s body map

“I don’t like to see myself naked after my last operation. It’s a reminder of everything I have been through up until now.” It seemed as if tattooing over her scars would simultaneously conceal the physical deformity, and ease the emotional suffering she had been experiencing, by helping her regain a sense of control.

4.1.2 Representations of the Self In creating their self-representations, women considered both their appearances at the time, as well as former/imagined future versions of themselves. The goal of selfrepresentation was for the women to depict how they wished to be seen. This could include realistic features; those which typically characterize human appearance (e.g., eyes, nose, mouth, body, limbs, hands, feet) or a more abstract representation, such as a featureless face or a mermaid tail, for example. Most women wanted to represent their current selves at the time of body mapping. Such features included the clothes they were wearing, the blemishes that were still fading, and their bodies that were still healing. Meredith, however, chose to represent herself during the time of her first cancer episode 5 years before, after she had lost her hair and was wearing a wig. With the goal of maintaining her femininity despite losing her hair (“I still wanted to be a beautiful woman”), Meredith specifically chose a “funky” wig that contained pink and white highlights contrasted against the overall black color. She also chose to draw herself wearing bright make-up and hooped earrings (Fig. 3). Similarly, relating to the time of her first cancer diagnosis, Sandra chose to represent herself in a pregnant state;

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Fig. 2 Lucy’s body map

also the time she received her first cancer diagnosis. Depicting the growing fetus in her womb reminded her of the difficult time she had experienced, as well as the decision she had made to postpone her cancer treatment until after giving birth. There were also abstract representations, such as Patricia’s shirt becoming seemingly invisible as it revealed her mastectomy scars beneath (see Fig. 1). She described the reasoning as follows: “. . .like I’m wearing a t shirt and then I’m showing you all this [scars] you see? This part, I’m pulling up my – you see?” The deeper meaning in her self-representation was the important message she wanted to convey to other women with breast cancer: “I am showing other women that being without breasts, it’s not a sin and you must not be ashamed of your body.” It seems as if her own struggle with her altered appearance had turned into a personal lesson, which became a message to be passed on to other women with breast cancer.

4.1.3 A Desirable Future The women frequently remarked on aspects in their current situation that they wished would improve in the future. One of the most prominent goals among participants was their desire to regain their health and to live a long life alongside their family and friends. Indeed, for some women, such as Meredith, their motivation to survive cancer for a second time was firmly rooted in her desire to survive for her three daughters: “I knew I had to fight for them.” Similar concerns were expressed by

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Fig. 3 Meredith’s body map

Margaret, who, despite the debilitating pain she had been experiencing, envisioned a more desirable future: “My future I just want to live for my family.” Women also frequently visualized material gains in their futures. Patricia, for instance, drew a “happy” and “bright” future, indicated by a shining sun, and her dream car standing in the driveway of her dream house. In addition, being physically healthy would enable her to wear “9 inch heels” again, as she noted: “9 inch I’ll survive.” A better future seemed a rewarding goal, which, for most, was set against a backdrop of how much they had already overcome in their breast cancer journeys. Ursula, for instance, drew strength from looking back at the various obstacles and uncertainties she faced, contrasted as before and after images, before returning the focus to her ultimate future goal: “To be the happy mother and grandmother.”

4.2

Tone

The body maps revealed a wide variety of tones and moods evoked through images and words, with most indicating a combination of positive and negative emotions. The mood indicated by participants’ body maps was often determined by the overall standpoint or message they wished to convey. For example, many women chose to be smiling or happy in their body maps, indicating their current state of being. Others, such as Ursula, used words such as “hate” and “faith” to convey the various

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experiential states that made up her story. Moods such as pain and struggle were prominently featured in Margaret’s body map, with a despondent facial expression and dripping paint evoking the physical and emotional suffering she had experienced throughout her “long journey.” Representing a series of emotions in different places on her body map, Patricia (see Fig. 1) drew in tears on a magazine cut-out to indicate the emotions she experienced upon her first diagnosis. With her second diagnosis, she selected an image of a man drinking an alcoholic beverage to represent her use of alcohol to comfort herself after hearing the news that the cancer had returned. Interestingly, the man was pictured smiling, but Patricia added tears to his face, revealing her true emotional state at that time: “Crying my heart out.” Upon receiving a third diagnosis, Patricia became angry (“angry, short tempered, emotional”) and questioned the reason for her multiple diagnoses: “What have I done to get all these cancers.” The magazine cut-out of a cartoon character holding a large hammer simultaneously captured the anger she intended to convey, as well as her subsequent determination to overcome the disease: “I’m going to crush cancer with that hammer!” The several emotional states captured in both imagery and words in Patricia’s body map, highlighted the nuanced understanding that can be achieved with the addition of imagery.

4.3

Design

The first element of design is the color value (hue and tone). Striking colors were included in many body maps, such as Heather’s pink colored body and Meredith’s bright yellow background (see Fig. 3). Colors symbolize a wide variety of meanings and values. For example, Heather chose to color her body in pink because of the meaning she associated with the pink breast cancer ribbon. To her, the color pink represented the following: “Um that’s the pink for the ribbon of hope um that’s why I chose pink.” The tone of Meredith’s yellow background represented “Sun and new life. It is bright and alive.” The yellow background was contrasted against the plain white-colored body, which she decided to keep as such for the meaning it represents: “clean and light.” It seemed as if Meredith had chosen to keep her body colorless as an illustration of the healthy body she aspired to have once again. Another example in which color became a prominent feature, was Gwen’s multicolored backdrop (Fig. 4). Purple in the top right corner indicated the “dark time” she had been through after being diagnosed with a third cancer. The red color symbolized the advanced cervical cancer which had metastasized from her primary breast cancer, its meaning given as follows: “. . .it’s just I wanted the colour in here and I thought ag let me just stick it in between my legs cos that’s just exactly where it should be.” These examples illustrate how the elementary task of simply adding color can portray significant meanings and values. With regard to the two-dimensional outlines of objects and shapes, the second element of design, several elements were used by participants to create visual interest. One participant, Brenda, wished to visually represent a part of her story

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Fig. 4 Gwen’s body map

that left her with a renewed sense of resilience: a taxi had knocked her over one day on her way to the breast clinic. She chose to draw the taxi appearing “out of nowhere” and suddenly striking her, leaving tyre marks on her legs. The significance of this taxi story is how she metaphorically related it to her breast cancer recurrence: “It’s like when the car knocks you, you not waiting for the car to knock you [. . .] So the cancer it’s just like this, because it’s a tragedy, because just come like nowhere. It just knocks you out of nowhere.” Form, the third element of design, is a feature which speaks to the creation of three-dimensional areas and objects through shading. The most vivid illustration of such dimensions can be seen in Bonnie’s body map (Fig. 5). With the dramatic shading illustrated as the background of her body map, starting with a darker color and then fading to a lighter color, she intended to symbolize everything she had managed to overcome in her journey: “The darker color at first, then as the time goes on then you can put that light color as to indicate that all those things that I went through that I’ve overcome.” Visually illustrating the achievement of overcoming breast cancer once before, this metaphorical use of shading is arguably the most pronounced feature of her body map. Moreover, through such abstract use of color, Bonnie foregrounded a temporal dimension, adding rhythm and movement to her story: “It’s becoming much lighter, at the end it will be light light as to show that uh all the things that I’ve gone through now they are all in the past, now there’s light.”

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Fig. 5 Bonnie’s body map

Affective spaces, the fourth element of design, highlights the creation of spaces which have significance based on the location on the body map and on the emotional connection signified. With regard to specific locations of images, women often wished to include family portraits in the form of hand-drawn figures or magazine cut-outs. These were often located in close proximity to the position of the heart, such as seen in Lucy’s body map (see Fig. 2). The positioning of her family close to her heart contained the following meaning: “They are the closest to my heart, they will always take first place in my life.” Similarly, enclosed in hand-drawn heart, and surrounded by the words, “family,” “hope,” and “love”; Meredith chose to draw her husband and three daughters just above her heart (see Fig. 3). Another commonly referred to affective space was participants’ sources of strength, illustrated above or beside them. For example, Heather’s “guardian angels” were located in close proximity to her shoulders, while Patricia’s angel wings were indicated beside her (see Fig. 1), with the following description: “So every time when I feel down, I think He [God] is sending His angels to me to protect me.” Ursula chose to paint in a blue sky above her in her body map, representing “heaven,” as her source of strength. Such illustrations point to commonly referenced religious tropes that situate a higher being above (e.g., heaven) or on an individual’s shoulder (e.g., angel/demon). Texture, the final element of design, was added to the body maps at the end of the mapping sessions if the participants wished to do so. Some women chose to decorate

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their body maps with feathers and glitter, giving those parts of their maps a different texture to the rest. For example, Bonnie (see Fig. 5), chose to add glitter to her cheeks. The glitter symbolized the make-up she enjoyed wearing when feeling wellenough: “Especially when I’m not sick, I like to do my face hey.” Not only did the addition of the glitter provide a different texture, it represented a state of health. Since Bonnie’s cancer had invaded her chest wall, it became difficult for her to breathe properly. Her subsequent desire to become well enough to wear make-up was therefore an understandable future aspiration. Other women added glitter to certain parts of their body maps they wished to emphasize, such as a bright and shining sun, offering an added textural note to their visual creations. The visual analysis discussed above illustrates how body mapping may be used as an arts-based methodology; one that is able to create a wide variety of representational opportunities, thereby enabling participants to capture those moments of their experiences that are less likely to be sufficiently articulated in words. By shifting the focus away from language as the primary source of data, and replacing it with creative expression, participants are given a much wider referential scope through which to convey their stories.

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All Populations Equal?

The methodological innovation of arts-based qualitative techniques such as body mapping, is premised on the assumption that it is accessible to most participants. Part of the inclusive nature of body mapping, is that it relies on the senses as a whole and does not assign special status to vision as the main channel in the construction of knowledge (Bagnoli 2019). However, while the focus on sensory perception and embodied knowledge may confer an advantage to those less comfortable communicating in language, such as migrants or individuals with intellectual disabilities, it excludes a significant proportion of the population, particularly individuals with disabilities. Furthermore, the body mapping approach assumes that people will be willing and able to communicate their thoughts, feelings, perceptions, and subjectivities in visual form, and that they will be comfortable to discuss their bodies. These assumptions may, paradoxically, exclude a large number of individuals from participating in such an approach. Varying artistic ability may impede participants’ willingness to engage in body mapping, as would bodily difference, in which case, an interview might yield better qualitative data. The participants in this research project were diverse in terms of age, ethnicity, first-language, and living environment. None of the participants were known to have a background in art or artmaking. Despite variations in physical and artistic ability, body mapping accommodated the range of voices, preferences, functional limitations, and language barriers present in the study. It offered a more inclusive approach in that participants who struggled to find the appropriate term to describe their experiences and felt sensations, were able to convey their message in alternate

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ways, such as pointing to the features on their bodies, or using different colors and images to express their meanings and views. It should be noted that variations in physical or artistic ability may require modification in order to make the body mapping exercises more accessible (Gastaldo et al. 2012). For example, in this research project, magazine cut-outs greatly facilitated the ease with which participants were able to convey certain thoughts and feelings characteristic of their subjective experiences. While care should be taken to adjust the method according to participants’ needs, Gastaldo et al. (2012) caution that when using print media, other concerns about inclusiveness could be raised, as many images could contain cultural or gender stereotypes. Fortunately, no such concerns were raised in the study this chapter describes. Although the body mapping activities employed in the research project in question were straightforward and required no previous experience in art or artmaking, more advanced applications requiring established artistic skills might be more appropriate in other contexts (see Bagnoli 2019; Collie et al. 2006).

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An Empowering Methodology

Body mapping may also foster social inclusion by promoting individual empowerment in research (Lys et al. 2018). For instance, body mapping might be thought of as a means to equip participants with new skills, thereby adding to their confidence, to either display their narratives in public, or to influence others who come across their work (Rose 2016; Smit 2020). The women taking part in this study were seemingly cognizant of the opportunity to have their stories heard, while others (outside of the study) may never receive such an opportunity. Apart from being a platform from which to disseminate stories that might otherwise not have been created or heard, the visual medium provided by body mapping might enhance the accessibility of audiences to the views and subjectivities of the participants. Body mapping may also offer a useful conduit to ease conversations about topics that are stigmatized or challenging to address (Lys et al. 2018). Foremost among such would be the experiences of marginalized individuals and vulnerable communities; those less able or unable to protect themselves, including those with a history of exploitation and discrimination (Wareham 2020). These could include, inter alia, disabled individuals, migrants, refugees (e.g., Davy et al. 2014), as well as individuals self-identified as part of lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities (Gastaldo et al. 2018). Moreover, in group or community settings, body mapping may also help bridge divides between different cultures (e.g., Gastaldo et al. 2012), languages (e.g., Botsis and Bradbury 2018), knowledge paradigms (e.g., between indigenous and Western knowledge; Wallace et al. 2018), and societal composition (e.g., between dominant and marginalized social groups). In these contexts, body mapping may make explicit the value of interconnectedness, and the importance of exposing and challenging forms of exclusion (Sonn and Baker 2016).

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Conclusions and Future Directions

This chapter has presented an application of body mapping to exploring women’s subjective experiences of living with recurrent breast cancer. The research project described in this chapter was premised on the notion that body mapping enables participants to engage in the creative expression of their stories in a more reflexive, embodied manner. As illustrated in the visual analysis, participants’ use of their bodies as a source of experiential cues and art as a form of communication, enabled them to document aspects of their breast cancer stories that were not easily put into words. By expanding the representational scope to include nonverbal dimensions, body mapping enabled the generation of holistic knowledge that did not privilege words as the primary source of data, yet, allowed participants to better articulate thoughts and emotions than before. The conceptual content aside, the visual interest created through the designs and tones in each body map, provided participants an opportunity to express what they would not have had a chance to verbalize, thereby expanding their stories in new ways. For example, the visual elements of their body maps added new dimensions to their stories, such as color value, three-dimensional depth, rhythm and movement. With its tremendous potential for adaptation, body mapping is perhaps one of the most inclusive research methods. However, while its flexibility as a method caters to a wide variety of research contexts, a cautionary note is warranted: its present reliance on physical abilities such as sight and bodily cues automatically excludes certain populations from taking part in studies in which body mapping is the only methodology. Despite this limitation, the participatory approach of body mapping confers certain advantages. For example, both the visual and participatory angles favor the easing of conversations about sensitive topics, making body mapping an extremely useful tool to be employed among vulnerable individuals. In addition, decentralizing the emphasis on language makes body mapping an ideal method to be used among those who have low literacy, or who may not be as confident communicating in language. No matter the context, care should be taken to provide effective researcher-participant collaboration, particularly when utilized among vulnerable groups. Accessibility of arts-based participatory approaches to an even greater proportion of participants is a fundamentally important future research endeavor. Foremost among such populations, could include people with physical and intellectual disabilities. Several possible modifications, such as communicating in sign-language among the hearing impaired, could foster even greater social inclusion. While such efforts may require specific resources, it is imperative to incorporate measures to ensure inclusion. Furthermore, the use of arts-based methodologies to investigate a variety of illnesses remains an underutilized research avenue, one which could potentiate the expansion and adaptation of such methodologies to answer a variety of different research questions. In addition, the increased attention being paid to arts-based methodologies opens up new avenues for dissemination, such as multimedia or interactive exhibitions. Finally, creative forms of community outreach can become a channel for community building, which can potentially offer an extension of projects like the HIV

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Memory Box Project. The endeavors mentioned above highlight the enormous possibilities for researchers working with participatory arts-based approaches. Researchers are encouraged to utilize body mapping as a means to foster social inclusion and to adopt strategies that expand the representational possibilities available to participants.

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Funding

This research was supported by the Harry Crossley Foundation and Stellenbosch University.

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Power, E. M. (2003). De centering the text: Exploring the potential for visual methods in the sociology of food. Journal for the Study of Food and Society, 6(2), 9 20. Predeger, E. (1996). Womanspirit: A journey into healing through art in breast cancer. Advances in Nursing Science, 18(3), 48 58. Puig, A., Lee, S. M., Goodwin, L., & Sherrard, P. A. (2006). The efficacy of creative arts therapies to enhance emotional expression, spirituality, and psychological well being of newly diagnosed stage I and stage II breast cancer patients: A preliminary study. The Arts in Psychotherapy, 33(3), 218 228. Radley, A. (2009). Works of illness: Narrative, picturing and the social response to serious disease. Ashby de la Zouch: InkerMen Press. Rose, G. (2016). Visual methodologies: An introduction to researching with visual materials (4th ed.). Thousand Oaks: SAGE. Sabo, B. M., & Thibeault, C. (2012). “I’m still who I was” creating meaning through engagement in art: The experiences of two breast cancer survivors. European Journal of Oncology Nursing, 16(3), 203 211. Salamonsen, A., Kruse, T., & Eriksen, S. H. (2012). Modes of embodiment in breast cancer patients using complementary and alternative medicine. Qualitative Health Research, 22(11), 1497 1512. Santen, B. (2014). Into the fear factory: Connecting with the traumatic core. Person Centred & Experiential Psychotherapies, 13, 75 93. Santen, B. (2015). Treating dissociation in traumatized children with body maps. In C. Malchiodi (Ed.), Creative interventions with traumatized children (pp. 126 149). New York: Guilford Press. Sharf, B. F. (2009). Observations from the outside in: Narratives of illness, healing, and mortality in everyday life. Journal of Applied Communication Research, 37(2), 132 139. Skop, M. (2016). The art of body mapping: A methodological guide for social work researchers. Aotearoa New Zealand Social Work, 28(4), 29 43. Smit, A. (2020). Breast cancer stories: Exploring the multimodal narratives of twelve South African women with recurrent disease. Unpublished doctoral dissertation, Stellenbosch University, Stellenbosch. Solomon, J. (2008). “Living with X”: A body mapping journey in time of HIV and AIDS. Facilitator’s guide (Psychosocial wellbeing series). Johannesburg: REPSSI. Sonn, C., & Baker, A. (2016). Creating inclusive knowledges: Exploring the transformative potential of arts and cultural practice. International Journal of Inclusive Education, 20(3), 215 228. Stevens, M., & Le Roux, N. (2011). A human rights violation: The forced sterilization of HIV positive women. Nursing Update, 35, 32 35. Suwankhong, D., & Liamputtong, P. (2016). Social support and women living with breast cancer in the south of Thailand. Journal of Nursing Scholarship, 48(1), 39 47. Tarr, J., & Thomas, H. (2011). Mapping embodiment: Methodologies for representing pain and injury. Qualitative research, 11(2), 141 157. Teti, M., Majee, W., Cheak Zamora, N., & Maurer Batjer, A. (2019). Understanding health through a different lens: Photovoice method. In P. Liamputtong (Ed.), Handbook of research methods in health social science (pp. 1147 1166). Singapore: Springer. Thibeault, C., & Sabo, B. M. (2012). Art, archetypes and alchemy: Images of self following treatment for breast cancer. European Journal of Oncology Nursing, 16(2), 153 157. Wallace, H. J., McDonald, S., Belton, S., Miranda, A. I., da Costa, E., da Conceicao Matos, L., . . . Taft, A. (2018). Body mapping to explore reproductive ethno physiological beliefs and knowl edge of contraception in Timor Leste. Qualitative Health Research, 28(7), 1171 1184. Wareham, C. (2020). Vulnerabilities in bioethics [PowerPoint presentation]. Parktown: University of the Witwatersrand. Wills, W. J., Dickinson, A. M., Meah, A., & Short, F. (2016). Reflections on the use of visual methods in a qualitative study of domestic kitchen practices. Sociology, 50(3), 470 485. Woodgate, R. L., Zurba, M., & Tennent, P. (2016). Worth a thousand words? Advantages, challenges and opportunities in working with photovoice as a qualitative research method with youth and their families. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 18(1), Art 2.

Participatory Mapping as Research Tool Social Inclusion and Young Refugee People

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Hala Kurban and Pranee Liamputtong

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Participatory Mapping Method and the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 What the Young Refugee People Say . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Perceived Social Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Stigma, Social Attitudes as Barriers to Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 New Social Environment and Health Concerns . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Place, Language Difficulty, and Social Connections . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Place, Social Support, and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 What Can We Make Sense of Young People’s Experiences of Social Exclusion/ Inclusion? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

This chapter discusses the use of the participatory mapping approach in the research concerning social inclusion among young refugees from the MiddleEast in Melbourne, Australia. Despite instances of stigma and social attitudes that negatively influence their perceptions of their social environments, most young people held the belief that they were now living in a safe country, free from violence and oppression. Their negative perceptions of Australian society generally revolved around financial and social barriers such as cultural differences and xenophobia. These barriers hindered them from adapting and forming connections with the Australian community. The young refugees face various structural and cultural inequalities that significantly influenced their health and well-being. H. Kurban Melbourne, VIC, Australia P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_65

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Mental well-being was their greatest health concern. All young people reported the significant influence of the English language on their ability to adapt and form connections with their new social environment. The presence of positive social support in their new social environment had a great impact on the health and wellbeing of young people. The findings of this study contributed to the role of therapeutic landscapes and social support in helping young refugees to feel that they belonged to the society, and assisted them to better adapt to their new living situation. This helps to enhance their social inclusion in Australian society. Keywords

Refugees · Middle-Eastern · Young people · Social attitude · Xenophobia · Health · Language · Social support · Australia

1

Introduction Community mapping is a way of telling a neighborhood’s story. Mapping is a way to identify local assets, networks, and opportunities in a community. (Jackson and Bryson 2018, p. 111)

In this chapter, we discuss the use of the participatory mapping approach in the research with young refugee people from the Middle-East who have settled in Australia. Due to the development of poor economic conditions, on-going conflicts, and political unrest, many individuals find themselves displaced from their homes (McMichael 2019). Refugees face various barriers that affect their access to health and social care. These barriers include language, low income and unemployment, cultural differences, legal barriers, and a general lack of knowledge and awareness in the health and social care on issues that are specific to refugees (Murray and Skull 2005; McMichael 2019). Despite having the opportunity to escape persecution and seek refuge in a new country, they now face further psychosocial barriers. These barriers are indicative of surviving traumatic experiences and being forced to live and assimilate/ integrate within a culturally alien environment (Kurban and Liamputtong 2017). Additionally, many refugees find themselves facing discrimination (Çelebi et al. 2017; Quinn 2014; Kastrup 2017). This discrimination has been directly seen in the form of national governmental policy, which has not only had a major impact on refugee health status and access to health care, but also in all areas of their lives, including forced unemployment, increased conditions of poverty, and future insecurities (McMaster 2001; McMichael 2019). These policies have been indirectly driven by perceived negative social attitudes toward refugees within the wider population (Pedersen et al. 2005b; Kastrup 2017). Besides cultural differences, many people within the Australian population are concerned that refugees are a threat to current welfare conditions, community cohesiveness, and economic and health resources (Schweitzer et al. 2005). As a consequence, this has led to increased social stigma and discrimination toward this population, making it more difficult for them to successfully integrate into their new social environment (Schweitzer et al. 2005). Literature examining societies’ attitudes

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toward the refugee population has made it abundantly clear that the majority of Australians harbor negative feelings toward the refugee population (McMaster 2001; Pedersen et al. 2005a, b; Murray and Skull 2005; Schweitzer et al. 2005; Casimiro et al. 2007; Fozdar and Torezani 2008). For instance, a study conducted by Pedersen et al. (2005a) found that the majority of Australian’s (71%) hold negative views toward refugees. These results are similar to Pedersen et al. (2006) who found that refugees have significantly suffered as a result of Australia’s negativity toward this group. Both studies found a high correlation between negative attitudes and false beliefs. In both studies, refugees were identified as a considerable threat to Australian society. A study conducted by Schweitzer et al. (2005) argued that Australia’s current political climate could be attributed to the negative attitudes of mainstream society. This study implemented a quantitative study design that assessed the attitudes of 261 university students toward refugees. Similarly, Schweitzer et al.’s study (2005) also indicated that the main indicator of prejudice was the perception that refugees are a symbolic and/or realistic threat to the Australian community. In terms of Middle-Eastern refugees, negative social attitudes have been attributed to the popular media-driven notion that people from those areas of the world are Muslims, so are, therefore “terrorists” (Humphrey 2013). These anti-Muslim views have been directly influenced by well-rehearsed stereotypes of Islam, perceptions of threat and inferiority as well as the belief that Muslims do not belong or are absent within Australian society (Dunn et al. 2007). This Islamophobia is often reinforced by negative media portrayal and a hostile government disposition (Dunn et al. 2007). Some view this as an attempt by the elite majority to maintain power and control by negatively portraying minority groups as deviant, dangerous, or different (Van Dijk 2000). Since there is limited interaction between refugees and their host society, these representations are unlikely to be challenged, creating instances of racism through the fear of a common enemy (Sulaiman-Hill et al. 2011). As a result of Australia’s negative perception toward Islam, it is commonplace for many Australian Muslims to experience acts of discrimination, verbal abuse, and violence. These perceptions are driven by the contrasting theological, philosophical, and ideological underpinnings of Islamic and mainstream Australian culture (Dunn et al. 2007). Furthermore, there is an apparent association between negative attitudes toward Middle Eastern refugees, and arriving “illegally” by boat. It was the arrival of 12,000 predominantly Middle Eastern asylum seekers, between 1999 and 2001 that incited an unprecedented negative political, media, and public reaction (Hugo 2002). However, it was because of this, coupled with the terrorist attacks on 11 September 2001, that public reaction toward asylum seekers intensified amid the responses to terrorism. This was reinforced by increasing negative political rhetoric targeted toward asylum seekers (Kampmark 2006). A study by McKay et al. (2012) used a mixed methods community survey to understand community perceptions and attitudes relating to asylum seekers. They found that participants were more likely to identify Middle Eastern refugees as their biggest concern regarding national security, and preserving the Australian way of life. This is consistent with the research of McKay et al. (2011) on media representations of asylum seekers who arrived by boat in Australia in the 5 days after an explosion of a refugee boat off the coast of Australia. Their findings suggested a link to terrorism that perpetuated the belief that

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asylum seekers pose a risk to Australian society, and would seek to dominate rather than assimilate into Australian culture and its values. While there were numerous studies surrounding refugee health, little is known about young Middle-Eastern refugees living in an Australian metropolitan context. This seemed pertinent, particularly in the social and political aftermath of the events of 11 September 2001, and more recent global crises. This chapter, based on the community mapping method, discusses how young Middle-Eastern refugee individuals perceive their health and well-being, the barriers they face in their new homeland, and addresses means that helped these young people to connect to their new social environment. It is argued that by recognizing and understanding these factors, appropriate policies and strategies can be implemented to address them, which could lead to the promotion of the health and well-being of young refugees.

2

The Participatory Mapping Method and the Study

The study on which this chapter is based adopted a qualitative approach, which is essential when we want to explore and understand people’s own experiences, attitudes, behavior, and interactions (Bryman 2016; Liamputtong 2020). This approach plays a significant role in giving a voice to participants of the study; it provides them with the opportunity to openly share their experiences. This approach is particularly important when working with a vulnerable population (such as refugees); it gives voice to the marginalized (Liamputtong 2007, 2010, 2020). In our study, we adopted the participatory mapping method in conjunction with an individual interview with the young people. This visual method is particularly useful when engaging with participants with linguistic and conceptual barriers (Liamputtong 2007, 2010, 2020). Moreover, it promotes the facilitation of further discussion and exploring “ways of seeing” (Backett-Milburn and McKie 1999). Participatory mapping, according to Petersson et al. (2020, p. 2), refers to “the action of producing a map of a certain location together with or by the residents, often featuring local knowledge and resources” (see also Parker 2006). The participatory mapping approach was established through an early application of participatory mapping in natural resource management and agricultural research (see Chambers 1994, 2006). The approach embraces the core principles of PAR; that is “to support the power and capacity of people to represent themselves and their understanding of the world around them” (Amsden and Van Wynsberghe 2005, p. 361). The approach “honours community voices; builds from the needs and strengths of the community; and supports community development as a process goal” (Amsden and Van Wynsberghe 2005, p. 362). Fundamentally, the process of map drawing offers insight into how research participants see their social world (White and Stephenson 2014; Fang et al. 2016). The drawing of maps helps research to be able to examine the subjective experience of their research participants: “Participants create a map that reflects their daily experiences and perceptions; with this visual reference in front of them, they can acknowledge and discuss features that are influential from their points of view” (White and Stephenson 2014, p. 416). Because the maps are drawn by the

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participants, the maps can “serve as highly contextual frameworks” for the participants to express issues that are locally relevant to them. This can avoid situations that the researcher asserts his/her own influences onto the research. As the participants are encouraged to draw what they have experienced, it generates “a space in which they are empowered to talk about the issues important to them. The participants are in charge of the direction of the discussion and are led to feel ownership over the project” (White and Stephenson 2014, p. 416). In the last decades or so, the participatory mapping approach has been adopted in a number of disciplines for diverse research and development purposes (see Liebermann and Coulson 2004; Dogus et al. 2007; Emmel 2008; Dennis et al. 2009; Fang et al. 2016; Jackson and Bryson 2018; Petersson et al. 2020). The approach has been adopted in research involving migrants and refugees (see Downs and Stea 2005; White and Stephenson 2014; Campbell et al. 2016; Ortiz-Echevarria et al. 2017).

Source: https://sites.utexas.edu/participatory mapping/research/the role of mapping for land rights and local development/

Source: http://www.earthdecks.net/gis/

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In Campbell et al.’s study (2016, p. 219), the participants took part in a mapping exercise that was prompted by the invitation to “draw a map of your community.” The participants were provided with large sheets of paper and some drawing materials. After the mapping session, an individual in-depth interview was conducted with each youth to discuss his/her map. These questions included: “Which places in your community do you find desirable/undesirable and why?”; “In which places do you feel safe/unsafe, welcome/unwelcome and why?”; and “Which places contribute to your quality of life in a positive/negative way and why?” In our study, the young people were asked to “draw” or “map” their neighborhood. This was to ensure that their stories could be better heard through images. They were asked to map out and highlight where they lived, what they liked, and what they did not like about their environment. To ensure maps comprehensively depict their’ lives in Australia, this task was conducted at the end of each interview, when they had been encouraged to think about all aspects of their social environment. After drawing, the young people were invited to tell more stories from their drawing of maps. The data obtained from this method does not merely duplicate the results generated by the in-depth interview, but offers further insights and understandings that could be difficult to obtain through reliance on a single method of data collection (MacDougall et al. 2005). This method was implemented to provoke an increased depth of response.

3

What the Young Refugee People Say

Several main themes that we constructed from our study are discussed: perceived social environment; stigma, social attitudes as barriers to integration; new social environment and health concerns; place, language difficulty, and social connections; and place, social support, and services. In terms of confidentiality, we ensured that each participant was not identified by using a pseudonym when presenting his/her verbatim quotation in this chapter.

3.1

Perceived Social Environment

When discussing their opinion about Australian society, most young people expressed both positive and negative views. In terms of positive perceptions, most of them agreed that Australia was a fair country, free and safe from danger. For Nassim, this was the best thing about Australia. The one thing I like about Australia, is that there is peace, no fighting things like that, If Australia changes, whatever comes, I still like Australia, it’s my country, it’s our country, and yeah still I want Australia, it’s not about what is good about Australia, what’s bad about Australia, the only thing is that it’s a peace country, it’s a nice country, I want to live where I want, I don’t want to grow in a country that has a lot of problems, a lot of wars.

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Some young people also discussed this idea of freedom and safety concerning Australia’s legal system. Mohamed touched on this: “I like Australia because of its fairness and its law. . . it’s a safe place and they give you everything you need, help you with your studies, make life easy for you, let people live their life easier.” A few young people represented this by drawing police as a thing they like about their neighborhood on their maps. Below is Jacqueline’s safe place in the neighborhood (see Fig. 1). Jacqueline stated that she liked the police because they make her feel “safe and. . . more helped.” Some young people also identified multiculturalism as the positive aspect of Australian society. Hameed suggested that since everyone did not look the same, there was less conflict, and he did not feel alone. This helped him feel more integrated within the Australian community. Nevertheless, although Ahmed identified multiculturalism as an aspect of Australian culture, his own experience revealed that this diversity did not prevent instances of discrimination and stigma. Like people here they really judge people on their looks, their nationalities, on everything, and even Australia is like multicultural, but still but they say you [f. . .. . .] Indian or you [f. . .. . .] Asian, even they tell me I’m a [f. . .. . .] Asian even when I’m not.

Young people’s negative perceptions of Australian society generally revolved around financial and social barriers that hindered them from adapting and forming connections with the Australian community. Nassim highlighted the difficulties

Fig. 1 My safe place

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refugees had to face when trying to start a new life in a culturally alien environment; everything was alienating for them [The] environment in Australia in opinion for migrants is hard, its a bit tough. Even for me my English is a bit better, it’s tough for me as well living in Australia. . . For asylum seeker or migrants, we are just starting our life new, so it’s a bit harder. The language and the rules and regulations and for future what we have to do, things is a bit complicated for us and people around us.

Some young people expressed attitudes of cultural dissonance toward Australian culture and lifestyle. This was due to the unfamiliar and/or conflicting cultural values, and norms that refugees were confronted with when moving to a new country. This is emphasized by Ahmed, who expressed his opinion on the drinking culture he found when he first arrived in Australia, and how this had influenced his ability to socialize within the community: When you move from the other side of the world to a new country. . .it’s new. It’s like you’re excited to do what people do here. But in reality, you don’t know whether it’s going have a good impact on you or bad. . .I find it really hard to go out and socialise here. People here go out drinking and smoking a lot, and most people are like 12/13 years old and they are all in drugs and I find that it is really bad how people are killing themselves.

This negative perception of Australian lifestyle was reflected in the drawings of a few young people, who drew images of needles to illustrate that they did not like the drug culture in Australia. Fig. 2 was Dana’s drawing. Young people also remarked that Australia’s social environment did not foster positive relationships. This made it difficult for them to socialize with anyone outside of their own ethnic background. Paloma elaborated this below: Over there, back in Syria, there is more socializing, it is better. . . The social environment is weak in Australia, I can’t see a proper social environment. I haven’t met anyone here from Australia to socialize with. I have only made friends that are from Syria. . .Back in Syria, everyone sees each other, they care about each other, they go visit each other, they are more together. But here, even within the family, everyone is busy and I hardly meet other people and even my family from here like my uncles and aunties they never sit with us or see us, They met us at the airport and then none of them sat with us. Then they sat in their own room and that’s it.

3.2

Stigma, Social Attitudes as Barriers to Integration

All young people recognized the significant influence of Australian social attitudes on their ability to adapt and form connections with their environment. Fadi expressed his belief that negative social attitudes acted as a barrier for refugees who were trying to adapt to society:

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Fig. 2 “This is drugs, I don’t liked [it] because it threatens our future”

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If these attitudes are shown in a negative way, it’s really hard for people to become open minded. To open themselves, they feel like there is a barrier. and the more there is a barrier, the more they won’t be able to adapt to society. So, once they become more accepted, and once there is a more positive attitudes towards them, positive perception, it’s more likely they will be more open minded and it will be easy for them to adapt to their social environment. So, that’s a very key issue. We need people with a more positive attitudes and perceptions to new arrivals, so they can be more open minded and adapt.

Xenophobia was seen as the main barriers to social integration in Australia. This discrimination was seen to be both entrenched directly within Australian government policy, and indirectly within Australian social attitudes. This was more common among those who lived in regional areas. Hameed spoke about the discrimination he received when he first came to Australia and was living in a rural town. Due to his physical appearance and accent, he was not allowed to enter a premise that other Anglo-Australians could. Well social environment in Melbourne is a lot better than when I first come to Australia. Like in [X], ‘cos most of the time I went there, as you can see, I don’t look like a local, so that’s why most of the time the security guard was like nah you can’t get in, they were making these excuses. The fact was I looked different and that’s why they didn’t let me in. . . When I first came to Australia and I felt horrible there. People’s attitudes towards you is not very good yeah, especially if you got an accent.

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This is further illustrated by Fadi who described his experience with his local council feeling insecure about the influx of Muslims moving into the area. As a result, they started to place restrictions on the number of people that could pray at his local mosque, restricting his freedom of religion. This council specifically. . . treating people of different race is really bad. . .Now more people [Muslims] are coming they are starting to feel insecure. For example, this mosque that we go they put on restrictions of the number of people that can go there and pray. that kinda of thing is affecting us now. If I am not allowed to go to the Mosque, if I am the two hundred and seventy oneth person I mean, I would be actually turned back, because I would be exceeding the number of people that is allowed on the premises. That is actually freedom of religion and I would be restricted to pray on that particular day, just because of council restrictions. So, it is affecting me.

There were, however, notable differences between the perceptions of young people who arrived in Australia by different means. Those who were considered to have arrived “illegally” by boat were more likely to perceive negative attitudes toward themselves than those who came via visa protection. Young people who perceived positive attitudes toward themselves felt more welcomed into the community, and were more confident when interacting with a member of Australian society. Dana shared that when people found out that she was a refugee, they would go out of their way to help her, and welcome her into the community. They have been very nice here. When I mention that I am a refugee they keep welcoming me, they help me. They keep helping me like keep repeating [what their saying] till I understand what they mean. . . I like the way they treat me. For example, when they ask me what I used to study in Syria and I tell them mathematics, they always say oh we need more people like you here. We need more teachers. So, I feel more welcomed and more important.

As a result of these perceived positive attitudes, some young people did not distinguish notable social disparities between themselves and the rest of the Australian community. In general, Australians are really nice, like I said the government and the people in Australia is really amazing. People are unbelievable the way they are treating you. . . There are] very good people in Australia. They didn’t make any different between the Aussies or the new people that come here, like Iraqis. . .Everyone, all the people who come to Australia is the same, I haven’t seen any difference between them. . . I have more confidence and more encouraged now because people in Australia have been very nice and helpful to me. (Yafi)

Those who perceived and experienced negative social attitudes tended to report feelings of isolation and disillusionment with Australian society. Some young people identified certain social institutions as being the main perpetrators of discrimination. Nassim shared a story that described his experience with one particularly racist staff member working for Centrelink, a governmental program that provides assistance to

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several disadvantaged individuals in communities in Australia. This person was nice to Australians, but would look down on him and other migrants and treat them like second-class citizens. For example, when I went to Centrelink, there was a lady who was Australian and she was like shouting and like pointing at me. . . in a way that is strange and I was really feel bad. “You filled out wrong, you did this, you did this”. I said excuse me, you are not my supervisor, it’s your job, If I did wrong give me a new paper and show me how to do it. It was kind of rude. I saw her too many times. She was totally racist. She wasn’t talking the way she was talking to Australians. She was nice [to them]. With migrants, she was not nice. She would sort of look down at you, like a second class citizen.

When asked why they thought some Australians held such negative views, some young people suggested that these social attitudes were shaped by the belief that refugees were a financial and cultural liability. Furthermore, some young people identified Islam as another major driving factor influencing public opinion. Hameed noted that many Australians were under the misconception that refugees (particularly those who arrived by boat) come to Australia to steal their jobs, or to reap financial benefits from the Australian government. Furthermore, he highlighted that many seemed to perceive Middle-Eastern refugees as Muslim, and therefore were terrorists. This further increased their distaste for refugees. People think that people who get into the boat and come to Australia are breaking the rules. But in fact you can see, those people don’t really have an option. . .There are a lot of people who don’t like refugees because . . . they think they get their jobs, they get benefits. Also, they look different. They see half the people came on the boat, they think they’re not good, maybe they’re Muslim, they’re terrorists, you know.

Samir too shared his experience with racism, and the emotional impact it had on him. Although he was Christian, when people found out he was from Iran, they automatically assume he was Muslim. Well yeah racism, like when someone makes a racist comment towards you, it really hurts deep inside. You know what you’ve been through, and they basically don’t know. They just look at you or judge you oh this Asian or this Muslim or Middle Eastern they’re like this or like that. People judge Muslims the same. Muslims are terrorist. Like maybe less than 0.35% of Muslims are terrorist, while the rest are good people. . . When I say I’m from Iran, they think I am Muslim. But in Iran, all the people are not Muslim; there are different religions.

Some young people indicated the role of the media in influencing social attitudes. Ahmed, for example, expressed his belief that the media played a significant role in perpetuating this idea that people from the Middle-East were terrorists. Yeah they [the media] have made people they are dangerous, or terrorist, even though we are not like that. It is very simple. Where I’m from, there are more American troops then there are terrorists in there. They haven’t succeeded and they never will or want to. The terrorist don’t work, how are they gonna provide food, weapons, where are they gonna come from?

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Of course from America. The same in Iraq, they are just trying to get people to support them so they can get what they want.

The young people also discussed the role of social media as a platform for discrimination. Dana claimed that while she had not experienced any discrimination first hand, she still sees it every day on social networking sites. Well it makes me feel bad, but at the same time I can’t do anything about it, I didn’t see anybody come up to my face and say that to me. . . but I see all that things on social networking like Facebook, twitter and YouTube videos.

Some young people also believed that these negative attitudes were derived from the belief that Middle-Eastern or Islamic refugees attempted to infiltrate and change the Australian way of life. Refugees coming from more culturally similar countries, such as Spain, were more likely to be accepted within the Australian community than compared to their Middle-Eastern counterparts. More of being infiltrated, they feel insecure. . .They wouldn’t bother having refugees from Europe because they do the same thing, you know what I mean? So if there is a refugee from Spain that comes here and seeks asylum or refugee, they really party hard, and that’s not a big issue for them because wow they’re good, they party for the group of people, you know those anti refugees. For them, the real problem is not the refugees per se but they feel threatened for like I said like infiltrated, or they think we might have a ban on all the alcohol. . .So, they think if people come here and they don’t like drinks so they might impose that on us. (Fadi)

3.3

New Social Environment and Health Concerns

For many refugee people, the meanings that are attached to certain landscapes are not always positive. Prolonged exposure to perceived hostile environments can diminish the health and well-being of an individual. Since being located in a new social environment, mental well-being was identified as the biggest health issue addressed by young people in our study. Often, they referred mental health to fears, anxieties, stress, and traumatic experiences in their lives. For most young people, due to the on-going conflicts in their home country, they still feared for the lives of their families and friends left behind. Nassim who left his entire family back home in Iraq and came by boat to Australia remarked: I think back to my family, because I live here and they live there. I live in a warm and nice place, in a safe place, but they live in fear and in a worse place, in a place where they don’t have the right of humanity. Things like this really making me upset; it’s just another problem I have to think about. It is stressing me out.

Young people that arrived in Australia via visa protection tended to see mental health issues as a result of traumatic experiences they had endured. All young people

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that arrived by boat noted a worsened mental health status since arrival in Australia. This was seen as the result of increased stress and anxiety caused by social and financial pressures. Hameed described the anxiety he felt when he first arrived in Australia, as the result of pressures placed on him to find a house, study, work, and look after his family. Well about the health, it’s getting worse here. When I first arrived I was suffering from anxiety, I couldn’t sleep. . . Because in Australia, you have a lot of things to do and you have pressure, from your house, and your family, like they push you hard. . . I’m the only one looking after my family and I have to look after myself as well. I have to study. I have to work, and there are a lot of things I have to do.

Due to job insecurity, Samir was unable to feel good about himself. As a result, his mental health was deteriorating: Every day is harder than the last, especially mentally. . .If I can find a good job to earn money, this is important to my well being. I feel like I need to be able to earn, in a good job, to feel good about myself. If I continue feeling this way, things will get worse. Every day, I am older, but living the same way. If my problems continue, I feel like it will get worse.

Young people that came by boat tended to experience instances of negative social attitudes. As a result, a few of them mentioned the influence this had on their mental health and social interactions. Ahmed expressed how being judged and bullied took a toll on his mental health, and has ultimately stopped him from going out with his friends: There is bullying, people judge you for no reason, and plus it’s hard to find new friends, and I feel that sometimes they use me. . .It has been nearly 8 months that I haven’t been going out as much, I have stopped hanging out with people. I don’t even like to go out as it makes me feel bad.

Nevertheless, in terms of physical health, almost all remarked that they were physically fit and had not experienced any decline in their physical health. Living in Australia, with access to health care, in fact, allowed the young people to pay more attention to their health. Nassim never thought or cared about this health prior to coming to Australia. However, due to the free medical care he received in the Australian health care system, he felt as though he was able to start taking care of his health. This positive perception of Australia’s health care was confirmed by most young people in our study. Yafi expressed his satisfaction with the health care system in Australia. While there might be a short wait to see a doctor, he had always been treated well. Yeah I’m very happy, with the doctors, and the health care system here. . .the health care system is very good, very good. Sometimes you have to wait for the doctors 2 3 hours but at the end of the day, you get treated well.

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Place, Language Difficulty, and Social Connections

Therapeutic landscapes rely on the meanings, significance, and felt values that are given to any certain place. Due to barriers such as language difficulties, social stigma, and structural discrimination, refugees often have difficulties adapting and forming connections with their new surroundings. In our study, language was identified by all young people as being a significant barrier in their attempt to form connections and adapt to their social environment. As a result of this language barrier, many of them felt as though they were unable to interact or communicate effectively with others in Australian society. Dana demonstrated the influence this language barrier had on her ability to form connections and adapt to the Australian population, and how this led to feelings of frustration and lowered self-worth. Yes the English language is quite hard. It is a barrier because I find it hard to go to the shops and like now I don’t understand you. . . It really affects me. I would be more interactive with them if I knew the language. . .I don’t find that they treat me differently but within myself I find it frustrating. (Dana)

However, young people also noted that once they had spent more time in Australia and began to grasp the English language, living in Australia became easier. Due to this, they felt more accepted in the community. When I first came here, there was a language barrier and it was hard to get along with people and get around, and I had to look after my family. Things were really hard for me back in the days. But now, as you spend more time in Australia, you get to know the language and how things work here and it’s gotten a bit easier. (Hameed)

Paloma noted that when she first arrived in Australia, she saw some social stigma and negative attitudes toward herself as a result of not knowing the language. However, since she started learning English, she could now talk to Australians with confidence, without worrying what they might think of her. This made her feel more like being an Australian. Firstly, at the beginning, I saw some negative attitudes, because it was like I don’t know language. . .Since I started learning the language, it has made me more confident when I want to talk with someone else, even if it’s an Aussie, like I can talk to him. Like it’s something beautiful, like it makes you feel more confident when you can talk to someone and he doesn’t act like something’s wrong or do something wrong to you. Like it’s nice. . .I thought I’m like an Australian, so I felt like there was not much difference.

3.5

Place, Social Support, and Services

To ensure health and well-being, individuals would seek out therapeutic landscapes that could facilitate positive connections to places that would help them to create a

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sense of belonging. Social support played a major role in this attempt. In our study, the presence and/or absence of social support was clearly identified as a key contributing factor toward their ability to form connections and adapt to their new social environment. We, however, noted a significant difference seen among young people that came by boat and those that arrived via visa protection. Those that came by boat tended to come alone and did not have any preexisting ties to the Australian community. However, those that came with a visa, typically came with their families and usually had greater access to available services. Families, including foster families, were regarded as young people’s main form of social support. Teachers and members of the Australian public also provided support to the participants. Some believed that they had become more adapted to living in Australia as a result of the social support they received from their teachers, and even the support they had been given by members of the Australian public. Paloma stated that because of teachers showing her around, or even people taking time out to help her on the bus, it was easier for her to adapt to living here. Here, I have become adapted because of the teachers. They help me when they find out I’m a refugee, they take me to the city as a trip, they show her how to do public transport and if I need anything I can ask the driver, or anyone on the bus and they all will help, that what makes it easier for me to adapt to living here.

Another form of social support was religious and refugee support groups. Since moving from the country to the city, Hameed was able to make more connections with his community as a result of joining certain refugee and Muslim support groups. Well compared to when I was living in [X], I’m building lots of connections with my community now, because there is a. . . refugee community in the southern suburbs of [Y], and um there is a Muslim community in here, and in [Z].

Church as a place of social support was also experienced among Christian young people. Churches were seen as a place of safety and refuge on the maps of a few participants. Yafi highlighted his church as a place he likes in his neighborhood in his mapping exercise (see Fig. 3). Churches made him feel “safe and welcome.” Another form of social support or service identified by young people was Centrelink. Centrelink is a program in the Department of Human Services that provides a range of financial support and services to families, carers, parents, retirees, people with disabilities, Indigenous Australians, people from ethnic backgrounds, and the unemployed. Young people expressed gratitude for the financial support that Centrelink provided them when they first arrived in Australia, and how this helped them settle in. However, despite this financial support, some of them viewed Centrelink with negative regard. Yafi stated that, while Centrelink was supportive in helping him get his life back on track, it also lowered his self-esteem and made him lack selfconfidence. This can also be seen within responses to the mapping activity. Some

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Fig. 3 Church as a safe and welcome place

young people highlighted Centrelink as a place they did not like in their neighborhoods in their mapping exercise. Fadi drew the map below (Fig. 4) to indicate his neighborhood and he circled Centrelink as a place he did not like. Lastly, some young people felt that while there were many services made available to them when they first arrived in Australia, there were not many services now that cater to their current needs. A change in political climate and an absence of effective services were the main reasons given by the young people to explain this lack in available services.

4

What Can We Make Sense of Young People’s Experiences of Social Exclusion/Inclusion?

There were two-sided perceptions about Australia among our research participants. Despite instances of negative social attitudes that negatively influence their perceptions of their social environments, most young people held the belief that they were now living in a safe country, free from violence and oppression. Due to past traumatic experiences and flight from ongoing conflict and persecution, many regarded a safe place to be the most important aspect of their social environment (Fozdar and Torezani 2008). This idea was expressed well in the testimony of one

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Fig. 4 Fadi’s neighborhood

young person who said that since moving to Australia, she did not need to worry about the fear of persecution for being part of a religious minority, or wake up fearing for the life of her family. Therefore, the impact of slight negative social attitudes and provocations would outweigh the detriment caused by the conditions from which they escaped. In their research, Fozdar and Torezani (2008) have also found that despite perceptions of experiencing discrimination, 76.7% of refugees living in Australia suggested they were satisfied with life, with only 4% reporting that they were not satisfied at all. However, young people’s negative perceptions of Australian society generally revolved around financial and social barriers such as cultural differences and xenophobia. These barriers hindered them from adapting and forming connections with the Australian community (Guzder et al. 2011). These barriers, while they may have less impact than the conditions that forced them to seek refuge, still have a marked impact on refugees’ lived experiences in Australia. A common thread seen throughout the study was the difference in perceptions and experiences seen among young people that arrived by boat, and those that arrived via visa protection. There were stark differences between how participants observed and made sense of their social environment. Participants that arrived by boat tended to experience instances of social stigma and discrimination. According to Blood et al. (2011) and Hugo (2002), refugees were considered to have arrived via “illegal” means were deemed to be a greater threat to Australian society. Furthermore, discrimination toward these young people was not only attributed to the fact

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that they were refugees, but also because they were Muslims. Humphrey (2013) contends that many negative social attitudes toward Middle-Eastern refugees are influenced by the popular media-driven notion that those from those parts of the world are Muslim, hence they are terrorists. This is demonstrated by one young person who asserted that although he was Christian, the moment they find out he was from Iran, they automatically labeled him as a Muslim and started acting differently toward him. This act of labeling and/or deviating individuals or groups of people based on certain characteristics is what Goffman (1963) has coined as the stigma. According to Goffman (1963), those that have been stigmatized are perceived or stereotyped by individuals and the wider community as undesirable, different, and are often rejected from mainstream society. Subsequently, those that have been stigmatized are often aware of what separates them from the normal standing order (Liamputtong 2013; Liamputtong and Kitisriworapan 2019). This knowledge can significantly influence the way they interact with and make sense of their social environment. This is evident throughout our study, as those that have been exposed to social stigma reported that they were often hesitant to socialize with the wider community, due to fears of social exclusion. Significantly, young people have indicated that the media has played an integral role in the construction of these social images. Negative representation in the media has the power to influence public opinion, shape governmental policies, and incite discrimination (Dunn et al. 2007; Afsar et al. 2011). This link between social stigma and the media was particularly apparent in the testimony of one young person who felt that to promote the government’s political agenda, the media has influenced the creation of a social environment that is particularly hostile to Muslims. Van Dijk (2000) asserts that, to ensure power is maintained by the social elite, marginalized groups are often demonized. In consequence of this, refugees who did not arrive via a legal means are portrayed as a threat to Australian society, seeking to infiltrate and dominate, rather than adopt Australian cultural beliefs and values (Krome et al. 2005; Dunn et al. 2007; Blood et al. 2011). This is confirmed by the findings of our study. The young people noted that Australians were likely to feel more threatened by refugees with conflicting cultural and social values, than refugees from similar backgrounds. In contrast, those that have arrived with visa protection were predominately Christian and were considered to have arrived legally in Australia. As a result, they were less likely to report perceptions of negative social attitudes. Therefore, this explains why some young people in our study tended to perceive and experience instances of social stigma and discrimination when compared with their other refugee counterparts. Refugees face many structural and cultural inequalities that can significantly influence their health and well-being (McMaster 2001; McMichael 2019). While it has become evident that refugees suffer from a plethora of health problems, research has identified mental health as their greatest health concern (Marshall et al. 2005; Çelebi et al. 2017; Kastrup 2017; Lindert and Schinina 2011; Miller and Rasmussen 2010; Steel et al. 2011). According to the World Health Organization (2018, 2019), good mental health and well-being are integral to successful functioning as human

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persons. Impaired mental health can lead to an inability to properly function, typified by a diminished capacity for cognitive and emotive function. This can impact a person’s capacity for social interaction, earning a living, and more broadly to enjoy life. A person’s mental health is characteristically determined by an array of social, psychological, and biological factors. Typically, the mental health concerns of refugees do not just stem from the stressors of past traumatic experiences (Hauff and Vaglum 1995; Pumariega et al. 2005), but also from the challenges of integrating into a new, culturally alien environment (Çelebi et al. 2017; Kastrup 2017; Lindert and Schinina 2011; Tingvold et al. 2012), or a non-therapeutic landscapes (CorreaVelez et al. 2010) in which they now live. The findings of our study are consistent with the literature that mental health was the greatest health concern among refugees. However, we found a clear distinction between the mental health outcomes of young people that arrived by boat and those that come with visa protection. Those that arrived with visa protection were more likely to report a worsened mental state due to traumatic experiences (Hauff and Vaglum 1995; Pumariega et al. 2005). However, they also noted an improvement in their mental health since arriving in Australia. This was mainly attributed to the relief they experienced from successfully escaping persecution and finding refuge. This improvement in health, as a result of settling in Australia, can be explained using the therapeutic landscapes framework theorized by Gesler (1992). According to Gesler (1992), therapeutic landscapes are influenced by a number of environmental, individual, and societal factors that can influence a sense of place. While places provide different meanings to different people, since settling in Australia, young people were more likely to attach such meanings as identity, a sense of security, location of work and family, and an aesthetic environment to the Australian landscape. This reflects the contention of Sampson and Gifford (2010), who assert that to ensure the promotion of healing and recovery, refugees must seek out therapeutic landscapes that facilitate positive connections to places that help create a sense of belonging. Thus, our study found that refugees who were able to make such connections with their social environment reported an improvement in their mental health and well-being. Furthermore, young people that arrived with visa protection were perceived to have greater social support from their families, and the wider community. This social support has been found to have a significant impact on health outcomes, as well as aiding in their capacity to adapt and form positive attachments to their social environment (Kovacev and Shute 2004; Stewart et al. 2011; Dumrongthanapakorn and Liamputtong 2017; Liamputtong and Suwankhong 2015). In contrast, the mental health status of those that arrived by boat appeared to be in decline. Kirmayer et al. (2011) have also found that perceived social, cultural, and structural barriers, hinders refugees from successfully integrating into Australian society. As a result, young people were more likely to report increased levels of stress, anxiety, and depression as a result of living in their host country. This was evidenced by one young person who described feeling anxiety due to a combination of social and financial pressures including finding accommodation, study, employment as well as having to support both himself and his family back in Iraq. Moreover, in consequence to coming alone, young people typically begin their

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new lives in Australia with diminished social support. This has been linked to negative health outcomes, as well as a reduced capacity to make ties to their community (Stewart et al. 2010). This was exacerbated by experiences and perceptions of social stigma and discrimination (Goffman 1963), implicit in the popularized notion that Middle-Eastern refugees have arrived “illegally,” and are a perceived threat to Australian society (Hugo 2002; Kampmark 2006; McKay et al. 2011, 2012). These findings reflect those of Lindencrona et al. (2008) who contend the four main perpetrators of stress for refugees are: social and economic strain, alienation, discrimination and status loss, and violence and threats. Consequently, the meanings that are attached to certain landscapes are not always positive. Prolonged exposure to socially hostile environments can diminish health and well-being (Williams 1998, 2010). Therefore, for refugees to improve their mental health and wellbeing, it is imperative that they overcome these barriers that obstruct their ability to integrate and form connections with their new social environment or their therapeutic landscapes (Williams 1998, 2010). Regardless of how young people in our study arrived in Australia, all reported the significant influence the English language had on their ability to adapt and form connections with their social environment. Those that had a greater grasp on the English language had more confidence when interacting with members of the Australian public, and in turn, they were also less likely to perceive negative attitudes. Jones et al. (1984) theorize that there are six dimensions of stigma: concealability, course, disruptiveness, aesthetic, origin, and peril. As a result, people are less likely to be stigmatized and suffer any adverse outcomes, if they can execute control over these six dimensions. In this context, the role of disruptiveness is particularly relevant in respect to the language barriers identified by the refugees in our study. This concept refers to the degree to which the marked difference impinges on relationships and interpersonal interactions (Jones et al. 1984). Therefore, members of the community will be more receptive to refugees who are able to communicate more effectively with them, than those that do not speak their host language. Due to language barriers, refugees are perceived as having a lower social status; they are bullied and discriminated against. This made many refugees feel that they do not belong in their new homeland (Correa-Velez et al. 2010; Sampson and Gifford 2010). This is also seen in the results of our study, as those that were able to interact more positively with the community reported that they felt like they belonged. Furthermore, young people who had difficulty grasping the English language not only had to struggle with interacting with the Australian community but also had trouble completing everyday tasks. This led to feelings of frustration and lowered self-worth among young people. Young people with competencies in the English language had more options in terms of vocational and academic opportunities that were not readily available for refugees that had an inadequate understanding of the English language. Those with a strong grasp of English were able to seek out social support services and interact in meaningful ways with their immediate social environment. Stewart et al. (2010) suggest that positive social support plays a significant role in facilitating

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employment and the ability to meet basic needs, reduced stress, and improved physical and mental health. This is what Cohen and Wills (1985) have theorized in their social support theory. Accordingly, the young people in our study reported increased levels of social support within their therapeutic landscapes that allowed them to be able to engage in educational programs and to participate in employment opportunities. Without the capacity to make these ties to the community, some young people felt isolated and found it difficult to make meaningful connections with other people. Hynie (2018) contends that refugees who are separated from their families tend to have significantly higher mental health problems, as a result of the insufficient social support and increased social isolation. This was less significant for those that arrived through official channels with the presence and support of their families. The findings of our study also showed that those that arrived by themselves were more likely to report an increased mental health issues, in addition to feeling detached from society (Derluyn et al. 2009). The dichotomy seen among the young people in our study confirmed the study conducted by Hill et al. (2014), where the presence of positive social support was found to have a significant impact on the health outcomes of participants. However, our study found that social support also played a significant role in determining mental health outcomes among young refugees. Kovacev and Shute (2004) emphasize this relationship between social support, acculturation, and health, stating that refugees who received or experienced perceived social support were more likely to have positive attitudes toward their host culture, resulting in higher self-worth and peer social acceptance. Social support theory recognizes the contribution interpersonal relationships have in alleviating the adverse health effects of stress (Cohen and Wills 1985). This theory suggests that relationships, intimate or confidants, can mitigate the psychological impact associated with exposure to stress (such as that experienced by a refugee fleeing conflict, and attempting to resettle in a culturally alien environment). This theory helps to explain why young people that arrived alone reported increased levels of stress, profound feelings of isolation, and a diminished capacity for integrating within their immediate social environment when compared to participants who arrived with their families.

5

Conclusion and Future Directions

Our study revealed that while young refugees have been given the opportunity to escape persecution, they now face further psychosocial barriers when they attempted to integrate into a new homeland which is often socially and culturally alienated. Further barriers arise from negative social attitudes, which are perpetuated by governmental policies that can be interpreted as anti-refugee. This sociopolitical climate has a clear impact on how refugees integrate with their social environment. Our findings highlighted the fundamental importance of assisting refugees in terms of accessing social support and making connections within their social environment. This was

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clearly linked to the improvement of health and general well-being as well as the facilitation of social inclusion of young people. The findings of this study contributed to the important role of therapeutic landscapes and social support in helping refugees to feel that they belonged and form connections with their social environment. Methodologically, the use of participatory mapping activity provides valuable means for young people to express their needs and concerns and their connections to society at large. The participatory mapping approach provides an opportunity to articulate their subjective experiences by making a connection with their social environments. They are able to draw what they see as salient to their lived experiences in their new homeland. We contend that the approach has allowed us to be able to better “see” the experiences of the young refugee people in our study through their drawn maps. In this chapter, we have generated a conceptual understanding of the lived experience of a group of young refugees that can assist health and social care to provide sensitive health and social care to these young people so that they can settle well into their new homeland. This, in turn, helps to promote their health and wellbeing as well as smooth social integration into Australian society. Further research focusing on Middle-Eastern refugees in the Australian context would serve to generate a greater understanding of the experiences of refugees, and provide a further understanding of the research implications. This could, in turn, be used to provide further evidence-based knowledge, to guide policy development and assistance to social support services that aid refugees in the integration process within their new environment. This would help social workers, public health workers, and policy developers to properly understand and cater to the needs of this marginalized subset of Australian society.

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Community Asset Mapping as a Method to Foster Social Inclusion

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Naiema Taliep, Samed Bulbulia, and Ghouwa Ismail

Contents 1 2 3 4 5 6

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Community Engaged Participatory Action Research Approach (CEPAR) . . . . . . . . . . . . . . . Community Asset Mapping (CAM) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Intersectionality of CAM, CEPAR, and Social Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Our Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Reflective Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Connecting Community Members and Stakeholders with a Common Interest . . . . . 6.2 Creating Inclusive Egalitarian Spaces for the Identification and Pursuit of Community Interests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Embracing an Inclusive Ethos by Promoting Active Participation . . . . . . . . . . . . . . . . . 6.4 Unsilencing and Affirming Subaltern/Repressive Voices . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 CAM Framed Within Inclusion of a Critical Lens to Decision Making and Social Transformation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

To stimulate active participation and inclusion of community members, research has to disrupt orthodox approaches and methods that are embedded in exclusionary practices. Community asset mapping (CAM), which is embedded within a community-engaged participatory action research approach (CEPAR), embodies social inclusion and a humanizing ethos. CEPAR and CAM embrace the ethic of inclusivity, indigeneity, and reflexivity, unsilence and affirm subaltern voices, mobilize assets and capacities, and address epistemic and social justice, the plurality of knowledge, including cultural and spiritual diversity, as well as N. Taliep (*) · S. Bulbulia · G. Ismail Institute for Social and Health Sciences, University of South Africa; South African Medical Research Council, Masculinity and Health Research Unit, University of South Africa (SAMRC UNISA), Cape Town, South Africa e mail: [email protected]; [email protected]; [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_66

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liberatory and sustainable praxis. This chapter will focus on a case study to reflect on the use of CEPAR and CAM to foster social inclusion when conducting research in a disenfranchised community in the Strand, Western Cape, South Africa. Keywords

Social inclusion · Community-engaged participatory research · Community asset mapping · Case study · Intervention

1

Introduction

Social inclusion and its polar opposite, social exclusion are complex phenomena that have garnered attention from multiple disciplines over the last few years, including education, health, economic, and social spheres. These terms have been used to explicate acts of social stratification within societies, to reveal how the categorization of people within societies establish social position, and, to describe or even at times rationalize why particular groups are shifted to the periphery, while others are worthy of access at the expense of the relegated (Allman 2013). In South Africa, where exclusionary practices were infused within the historical apartheid state-sponsored structural violence, numerous policies were developed postapartheid to enhance social inclusion and to redress these dehumanizing inequities and inequalities. The South African constitution, Section 9 (Part 2 and 3), guarantees the rights of all citizens, makes provision for statutory and other methods to protect or advance particular individuals or groups who are disadvantaged, marginalized, and unfairly discriminated against, and endorses the attainment of equality. Despite these legislative imperatives, it has been argued that the implementation of these policies remains a challenge (Dalton et al. 2012). Social inclusion is a complex concept that has been defined as a process aimed at “improving the terms for individuals and groups to take part in society” and for “improving the ability, opportunity, and dignity of people, disadvantaged on the basis of their identity, to take part in society” (World Bank 2013, pp. 3–4). The process of social inclusion is thus geared toward ensuring that all citizens, particularly those who are disadvantaged and marginalized, are afforded the opportunity and the resources to fully participate in the multiple spheres of everyday life. This process ensures that these individuals “have greater participation in decision making which affects their lives and access to their fundamental rights” (Commission of the European Communities 2003, p. 9). Recent calls for inclusive research practices are rooted in the exclusionary traditions of conventional research, where academics prescribe the research focus based on academic interest or scientific evidence, and planning, implementation, and analysis are done by the researcher, with dissemination geared toward academic audiences (Horowitz et al. 2009; Taliep 2016). In such instances, the university/ research institution exerts their exclusionary hegemony in the research process

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through their control of resources and decision-making and consequential exclusion of community members in fully participating in the research process. Communities are involved only to the extent of “mining” data for academic/institutional benefit. The idea that scientific objectivity requires researchers to distance themselves from the research participants have been rejected by many academics, who promote participation, collaboration, and a partnership approach to research (Horowitz et al. 2009; Lazarus et al. 2012, 2015; Minkler and Wallerstein 2008). Community engagement and participation is central to social inclusion. Community asset mapping (CAM), embedded within a community-engaged participatory research approach (CEPAR), is a method that makes allowance for the exclusionary practices of conventional research approaches by enhancing social inclusion. This chapter will use a case study to reflect on the use of CEPAR and CAM to foster social inclusion when conducting research in a disenfranchised community in South Africa.

2

Community-Engaged Participatory Action Research Approach (CEPAR)

CEPAR is located within the purview of participatory approaches to research. It has been argued that the most efficacious community-based participatory research projects become manifest as a logical consequence of a continuing progressive process of community engagement (D’Alonzo 2010). Community engagement is an inclusive concept that combines numerous academic activities carried out in partnership with communities, including community-based research and applied research (Lazarus et al. 2012). CEPAR can thus be defined as an inclusive participatory, mutually beneficial, collegial, and collaborative approach to research that foregrounds community engagement through the equitable involvement of community members, multiple local stakeholders, service providers, community leaders, and researchers throughout the research process (see Israel et al. 2003; Lazarus et al. 2012; Taliep et al. 2018). Responsibilities are shared and community voices, resources, and strengths (assets) are foregrounded and integrated to provide an inclusive understanding of a particular phenomenon, the sociocultural dynamics of the community of interest, and the knowledge gained is integrated with action through the participatory development of community initiatives to enhance the health and well-being of members of a community (Israel et al. 2003; Lazarus et al. 2012; Taliep et al. 2018). CEPAR is a Weltanschauung that reflects social inclusion, as it embodies a set of values pertaining to the role of social science research in diminishing social injustice, embracing differences, and encouraging and including the community in social change efforts (see Balcazar et al. 2004; Urbina-Blanco et al. 2020). These values include partnering with communities and mobilizing community members to actively engage and participate in research that advances citizen power and voice in communities (D’Alonzo 2010; Lazarus et al. 2012). Because of this, CEPAR is primarily geared toward addressing community challenges through emancipatory praxis by actively engaging with marginalized community members who are often

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excluded from decision-making processes and are integral in coproducing knowledge by infusing community knowledge, affirming agency, power, and ownership (see Lazarus et al. 2012; Seedat 2012; Taliep 2016).

3

Community Asset Mapping (CAM)

CAM is a research process for documenting and mobilizing community assets and resources to develop a plan/strategy to address local issues (Kretzmann and McKnight 1993). A community-engaged asset mapping approach comprises collective participatory mapping activities and exercises, which are geared toward a particular research objective, actively involving diverse local community members, stakeholders, leaders, and groups to obtain their input, ideas, suggestions, and feedback, to identify and mobilize individual, relational, collective, physical, and institutional community assets for community building and transformation. This method consists of a number of participatory sequential activities (see Table 1 below) for the particular purpose of identifying, mapping, ranking, and leveraging community resources, strengths, or assets (Cutts et al. 2017; Lazarus et al. 2017; Taliep et al. 2020). Taliep et al. (2020) posit that CAM reveals the assets of the entire community, highlights the interconnections among them, and identifies ways to access and mobilize those assets to address local challenges such as violence. The authors further note that it is also a process that provides “spaces for academic and community participants to interactively engage and critically discuss issues which resonate with community concerns, and to collectively find possible solutions to challenges identified” (Taliep et al. 2020, p. 17).

Table 1 Asset mapping process Community workshops 1. Community mapping 2. Peace and safety index 3. Community assets/ safety and peace matrix 4. Spiritual capacity and religious assets 5. Toward local action and closure

Service provider workshop 1. Timeline (includes organizational and institutional introductions 2. Religious assets and peace/ safety index 3. Mapping of services (footprint of organizations) 4. Mapping of relationships (Spidergram) 5. Characteristics of good practice and closure

Action planning workshops 1. The SCRATCHMAPS story

2. Community and service provider asset mapping workshops findings 3. Open discussion

4. Planning action

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Intersectionality of CAM, CEPAR, and Social Inclusion

Social inclusion is a primary goal of human rights, and has been explained with respect to the right of individuals or groups to full participation as respected and contributing societal members (Hall et al. 2019; Sherlawa and Hudebine 2015). Social inclusion involves feeling recognized and valued, and having individual and communal agency to decide on participation and the elimination of structural and judgemental barriers to participation (Hall et al. 2019). Sherlawa and Hudebine (2015) argue that in driving an inclusive agenda, it is vital to use participatory research methods that place marginalized people, and, particularly those members of the community who are “hard to reach” at the center of the participatory process. The intersection of CEPAR, CAM, and social inclusion all embrace participation, inclusion, and community voice and decision-making which are essential elements that are driven by a social justice agenda, where all the participants in the research process are recognized as equals in the knowledge production process. Participatory parity is achieved through CEPAR and the interactive participatory CAM activities that ensure equal status and voice, with community members centrally involved in decision-making and planning action (see Sherlawa and Hudebine 2015).

5

Our Study

The research design for this study was a mixed-methods intrinsic community case study design comprising both qualitative and quantitative methods within a participatory process evaluation framework. In keeping with a CEPAR and CAM approach, participatory evaluation also focuses on equitable community participation. This approach values the viewpoints, voices, preferences, and decisions of those individuals relegated to the margins of society, least powerful stakeholders, and program beneficiaries (Rossman 2000; Zukoski and Luluquisen 2002). To reflect on the use of CEPAR and CAM to foster social inclusion, we will reflect on the community engagement processes and CAM workshops in the development of the Building Bridges intervention that focuses on the mobilization of community assets, both tangible and intangible, to address male interpersonal violence through the promotion of positive forms of masculinity and safety and peace. The study was conducted in a low-income underresourced community in the Helderberg Basin of the Western Cape, South Africa, comprising of roughly 250 households made up of a main house and backyard dwellings. The predominantly Afrikaans-speaking community is reflective of the previously disadvantaged masses in South Africa that stems from the apartheid era of racial segregation policies institutionalized by the apartheid regime. Three asset mapping workshops were conducted with 74 diverse community members inclusive of multiple faiths, gender, age, educational background, and cultures; one mapping workshop with 18 service providers from different sectors (e.g., religious institutions such as churches and mosques; criminal justice sector

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such as the police; community structures such as the local community police forums; and government departments, such as Department of Correctional Services and the Department of Social Development); and two action planning workshops with 63 community members and service providers combined. The mapping workshops were geared toward identifying existing, often inconspicuous, overlooked, or undiscovered, tangible and intangible assets and resources, including spiritual and religious assets, and to look at ways these could be mobilized to address violence among males through the promotion of positive forms of masculinity. Key objectives of the CAM workshops include (Lazarus et al. 2014): 1. To focus on human capacity and assets (especially spiritual and religious assets and resources), acknowledging that essential assets lie in relationships and networks 2. To make both tangible and intangible community assets visible for the community and pertinent policymakers 3. To adopt a participatory inquiry approach, making sure that locals drive the inquiry and hold ownership of the knowledge produced as well as the action pursued 4. To contribute to the development of inventive community research methodologies, focusing particularly on the use of CAM Ensuing the inclusive CAM workshops, the team (community and academic) collectively and organically developed the Building Bridges intervention, which focuses on the promotion of positive forms of masculinity and safety and peace. The following table depicts the asset mapping process. The community mapping workshop process commences with contextual considerations by mapping the community boundaries and key social entities and facilities in the community, followed by an engaged conversation on context. To obtain a picture of what the key peace and safety issues in the community are, participants next identify the main factors that (1) contribute and (2) undermine safety and peace in the community, which are then integrated through a participatory discussion to develop a peace and safety index. Participants then rank the relative contribution of community facilities to safety and peace in the community by combining key assets identified in activity 1 and 2 to create a community asset/peace and safety ranking matrix. Exercise 4 focuses on religious assets and a discussion on masculinities, safety, and peace and the final exercise is a guided discussion on spiritual capacity and masculinities and moves to an integrated identification of characteristics of local examples promoting positive forms of masculinity, peace, and safety, followed by suggestions for local action and intervention. The service provider workshop started with a time line and time trend exercise which aimed to gain a deeper appreciation of the historical trends and social constraints as well as to introduce the stories of organization followed by a discussion on the history of the community. Similar to the community workshops, exercise 2 also focused on the development of a safety and peace index and a discussion. Exercise 3 and 4 focused on organizational relationships and visible networks through individual sector mapping and the collective development of a Spidergram (visual depiction

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of the type of organizational relationships reflecting a spider’s web). The final exercise aimed to obtain an overview on characteristics of good practice in the community followed by suggestions for action. The planning workshops commenced by presenting the finding from the previous workshops, eliciting further suggestions, followed by a focused process of narrowing down the key suggestions by listing priority actions using “what,” “who,” “how,” and “when” logic.

6

Reflective Discussion

To provide a sense of structure and order in reflecting, detailing, and recounting our results and discussion, our thematic reflections is structured under the following themes: (1) connecting community members and stakeholders with a common interest; (2) creating inclusive egalitarian spaces for the exploration and pursuit of community interests; (3) embracing an inclusive ethos by promoting active participation; (4) unsilencing and affirming subaltern/repressive voices, and (5) CAM framed within inclusion of a critical lens to decision-making and social transformation.

6.1

Connecting Community Members and Stakeholders with a Common Interest

The community is the central point of convergence within the context of CEPAR and CAM, and serves as the foundation for any work that is inclusive of community. The three CAM, one service provider, and two action planning workshops gathered community members around a common interest, mobilizing community assets for the prevention of male interpersonal violence. The CAM activities built a shared understanding of the key community challenges, and narrowed it down to a specific focus by mapping existing community assets, exploring ways in which these strengths and resources could be leveraged to address this challenge, and determining the best strategy. The process of CAM is a ground-up process, which engages with community and social actors to generate a collective decision on a program that best reflects and addresses a specific challenge, and promotes social transformation. This common agenda brought together stakeholders and people from diverse educational, spiritual/religious, generational, and gender backgrounds. Kabeer (2000) highlights that society is segmented through different forms of inclusion and exclusion, of which privileged, secondary, and problematic inclusion are elements. Allman (2013) speaks of social position as stratification, while Kabeer (2000) speaks of privileged insiders, such as service providers or academics, who hold key positions within mainstream societal institutions, who can influence the agenda and hold key decision-making powers, alongside (Kabeer 2000). Embedded in CAM are values of inclusion, participation, respect for the other, social justice, and praxis. The following excerpt emphasizes how the CAM process promoted inclusion:

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The importance of ‘respect’ was highlighted at several points, relating to all ages and groups. A high level of tolerance was demonstrated for example for people of other races, nationalities or religions. This tolerance (or respect) seemed to be dependent on that person being considered an ‘insider’ or community member as opposed to ‘outsiders’ (of any demographic).

In the CAM workshops, community members constantly exhibited high levels of trust, hope, and respect for fellow community members and underscored these values as critically important. To promote social inclusion, Nash (2002) proposes working with service providers, forming alliances, and developing community initiatives as key methods, all of which resonates with CEPAR and CAM. This diversity allows for intergenerational, inter-faith, and community stakeholder dialogue, which built community cohesion around the common interest. Speaking about their experience in the CAM workshops, a community member noted the following: This workshop made it possible for the service providers to relate to people who live in Erijaville and also to the past of the place.

Important factors to be considered to promote social inclusion in community engagement include connecting people with common interests with each other, and building of relationships between service providers and locals to assist all stakeholders to work together (Shriver et al. 2016). During the discussion at the conclusion of the CAM workshop, participants of the service provider workshop drew attention to the following aspects which were quite striking for them: It was good to get to know the other service providers, and meeting friendly people, building relationships, acknowledging each other, and accepting each other. There are many other organizations that should have been here, but we are grateful to those who are here. Issues are the same all over. These issues are heartfelt and need to be addressed here [in the community] so that we can lift our heads and take Blikkiesdorp (the community) forward.

The CAM process thus drew people together with a common interest or experience, with the same concerns, working toward a common purpose, which facilitated participation in valued communal situations, fostering an awareness of belonging, connectedness, and stronger social bonds (Crawford 2004; Henri and Pudelko 2003; Shriver et al. 2016). As noted by Planz et al. (2020), intentionally utilizing inclusive strategies in research, such as bringing together all individuals who have a stake in an issue as illustrated in the CAM workshops, engenders a sense of a safe space and the promotion of community connectedness and cohesion. Connectedness and interdependence are cultivated among community members through the interactive CAM activities comprising the sharing of views, beliefs, insights, and visions (Lloyd et al. 2006).

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Creating Inclusive Egalitarian Spaces for the Identification and Pursuit of Community Interests

Being included in the research process means that community members are valued as equal partners. Valued inclusive community situations which encourages participation includes the provision of opportunities or spaces for community involvement, such as in community building processes or social justice causes (Crawford 2004). The Roeher Institute has identified two essential conditions for valued citizen involvement: (1) access – individuals must participate in or have access to such situations to begin with, and (2) support – once in a particular space, individuals must also have the required practical means to participate as respected, valued equals (Crawford 2004). The following reflections by the core research team who conducted the CAM workshops demonstrate the importance of the creation of a safe space: Significant attention needs to be paid to creating trust and a safe space to hold these workshops. This was achieved due to the engagement of community members as part of the research team, because of the long term engagement that had preceded this, and because of the approach. An indicator that this ‘worked’ was the sometimes contentious insight given by all participants, the liveliness of the participation and debate (and the admission and participation of the drug peddler in the one workshop)

One of the participants openly told us in the CAM workshop that if he could find work, he would not peddle drugs, and about a year or two later, we discovered through one of our community research team members that he stopped peddling and moved from the area. Emphasizing the importance of being inclusive, one community member stated: “...put differences aside ... even if they are drug dealers ... include everyone and make a peace offering.” In pursuing a common objective, the CEPAR principles and CAM process provided an egalitarian safe space in which community members could find common solutions and were valued as equals in the co-construction of knowledge. These processes are critical elements of the ethics of inclusion and the creation of safe spaces which, as alluded to earlier, is fundamental to ensure the engagement of community members irrespective of their past actions (e.g., a drug dealer), and being nonjudgemental, thereby in itself becomes affirming and liberating for the individual and community. It is necessary to ensure that a suitable space is provided for community members to participate as valued appreciated equals in issues that affect them directly, to “feel free” to engage, question, discuss, establish the research agenda, identify the solutions, show people what is possible, and end with a final outcome that can contribute to community transformation (Crawford 2004; Henri and Pudelko 2003; Lazarus et al. 2017; Shriver et al. 2016; Taliep et al. 2020). The following quote represents the reflections of one of the community research team members on the CAM approach utilized in the development of the Building Bridges intervention:

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I think what is most important is the outcry of questions. Which assets is there that can contribute to the development of Erijaville. This is when one of the members of Hearts of Men was there and he actually named it. And it was through this that we found our intervention, because if it didn’t come out at that point in time (during the CAM workshops), the intervention would never have happened.

Thus, it was particularly the asset mapping process that created the safe, respecting space for community members to ask questions, become aware of important assets in their community, and co-construct and produce knowledge. Knowledge construction and production comes about during the development of projects that respects people’s understanding of life events and regards negotiation of meaning as essential, and this stems from participation (Henri and Pudelko 2003).

6.3

Embracing an Inclusive Ethos by Promoting Active Participation

Social inclusion mitigates the constraints to community participation (Shriver et al. 2016). Community participation signifies both processes and activities that allow local individuals to be heard, be part of decision-making processes, and take action on issues (Inter-agency Network for Education in Emergencies [INEE], 2004). A key principle of both CEPAR and CAM is active community participation through the provision of a space for interactive participatory engagement of community members in the entire research process, from identifying the research focus and planning strategies to developing, implementing, and evaluating these strategies. Speaking on the importance of participation as a human right at the high-level annual debate at the United Nations General Assembly, the UN High Commissioner for Human Rights, Michelle Bachelet, emphasized the importance of ensuring that participation is not simply formal or tokenistic, but actually truly meaningful and effective (Leal 2019). Tokenistic participation refers to instances where marginalized individuals have no choice, but to accede to decisions made by others on their behalf, and where they are unable to affect outcomes of challenges they encounter (INEE 2004; Morrisona and Dearden 2013). This is particularly true of conventional research methods whose objectives are always data driven, exclusionary, and involve communities on self-serving terms. This links directly to Kabeer’s (2000) contention on the many ways in which segmentation can occur because of exclusion and inclusion, and in this instance, more specifically, he refers to adverse incorporation or problematic inclusion, and how dominant groups exploit, marginalize, impose mainstream beliefs, devalue, and invisibilize particular categories of people. Beyond mere tokenistic participation, the CAM process serves as a practical means for safeguarding access to involvement, and inclusive participation in valued community situations (see INEE, 2004; Taliep et al. 2020). The UN High Commissioner for Human Rights emphasized that participation must be inclusive, and must especially extend to the marginalized and vulnerable in decisions that affect their lives (Leal 2019). According to Crawford (2004), people want to be included and participate as valued citizens in important instances that are of concern to them; in

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egalitarian spaces in which they are recognized and appreciated; and spaces characterized by mutual respect and trust. We had [CAM] workshops in May. So the people participated (sic) and they could raise their opinions . . . So they were involved in the intervention. . . . they helped with the workshops . . . with the different religious leaders, service providers and also the community showed this.

The CAM workshops intentionally focused on facilitating a process through interactive inclusive engagement activities (see Table 1) to identify the existing assets within the community, explore how these assets could be mobilized, and systematically narrow down the core strategies to address violence among young males by mobilizing these assets following the process outlined in Table 1. Active involvement and participation of community members facilitate the recognition of community-specific challenges and strategies to address them (INEE 2004, p. 80). Community participation can include consultative methods where the input shared by marginalized community members plays a significant role in the formulation of community priorities and decisions that may benefit them (Crawford 2004). In addition, just and equitable power relations, appreciation of human diversity, nondiscriminatory practices, ensuring access to marginalized individuals, recognizing individual strengths and talents, and limiting barriers to participation (e.g., conducting the CAM within the community), support participation by including and recognizing the experience of people with limited or no formal education, and use processes, methods, and resources to assist communication, develop common plans or projects, and sharing of knowledge. Community participation functions as a key strategy to recognize and mobilize local community resources, and build agreement and support for programs (INEE 2004, p. 80). A community member noted that the CAM process used in this study made assets more visible to them in the community: What actually fascinated me most is the fact that after we did the research we found out that here is plus minus 15 churches [surrounding] Erijaville. This makes me think that there are (sic) so many assets within the community and this could really make a difference in the community.

CAM thus promotes participation through the intentional hands-on focus on “visibilizing,” bringing to the forefront often unnoticed assets, and leveraging these assets, strengthening existing relationships and building new relationships by linking community members, service providers, and institutions around a common goal.

6.4

Unsilencing and Affirming Subaltern/Repressive Voices

Deliberately utilizing inclusive strategies in research ensures that all voices are taken into account (Planz et al. 2020). As a community-engaged participatory approach to research, the inclusive CAM strategies and workshop activities support the

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integration of multiple, diverse, and typically excluded voices. Collins et al. (2011) note that of the 25 major challenges in mental health research globally, scientists beckon for the investment and essential action for research practice in low- and middle-income countries that include the opinions and needs of local people. They also suggest and highlight the necessity of a wide-ranging spectrum of stakeholder engagement to plan and develop research and action priorities (Collins et al. 2011). Inclusive academics intentionally engage community members through communication, sharing of ideas and feelings, and active reflexive listening to eliminate power imbalances (Planz et al. 2020), but at the same time also provide affective support to people whose voices are often relegated to the margins and who never get to tell their stories. For example, in the service provider workshops, it was clear that the timeline activity provided participants with an opportunity to recount and share their experiences, and thoughts about the present and future in their community. One participant remarked that: This exercise highlighted the horrific things that happened in the past which many people cannot forget, but can repair themselves through their lifestyle and by creating a better future for their offspring.

Another participant noted: This workshop showed that all of us are part of a bigger story.

In the workshop evaluation forms completed at the end of the CAM workshops, participants were asked whether the workshop made them more aware of the strengths, assets, and resources in their community, and how this was achieved. One participant answered in the affirmative and noted that this was achieved: By listening to all the community voices about the concepts of peace and safety as it relates to their lives.

Participation is restricted when individuals are unable to exercise their voice, are deprived from important decisions or to engage with each other, or when their rights and honor are not given equal respect and protection (United Nations 2016). Inclusive practices encourage open communication through sharing of ideas or asking questions without any risk of criticism (Planz et al. 2020).

6.5

CAM Framed Within Inclusion of a Critical Lens to DecisionMaking and Social Transformation

The CAM process not only provides the opportunity for greater participation of community members, but also for active involvement in decision-making processes, and determining the most appropriate manner to address local challenges, and be directly involved in taking action. The CAM process created an inclusive

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environment in which community members felt welcomed, supported, respected, and valued to actively participate and make a meaningful contribution to transform key community issues (Urbina-Blanco et al. 2020). Such an inclusive and convivial philosophy embraces diversity and offers respect to all people (Urbina-Blanco et al. 2020). In our study, the CAM process facilitated a community-service provider partnership that is based on reciprocity, equity, and respect wherein which community members are not just considered as participants, but rather seen as equal partners and collaborators who share in decision-making, and where their knowledge is valued (Taliep 2016). One of the community research team members stated that: The asset mapping that was part of the research that we did to determine assets that exist in the community was of great importance because through this people realized how rich the community actually was.

In general community participants entered the workshop with feelings of apprehension/caution, but left with a sense of hope. Some participants highlighted that they were glad that they came to the workshop, and “were glad to see that the community is moving.” Many said that they were grateful to the team (academics and community research team) as they have been “living past one another.” One participant said at the end of the workshop that the workshops were a means of “Good awareness creation!”, and another, feeling motivated remarked: “I also want to do something for my community.” CAM as an inclusive method acknowledges and creates awareness and affirmation of personal agency, i.e., a personal aspiration to participate, to be engaged in society, have a motivational direction, and feeling of having a meaningful and important “say” and control in different situations, and that your presence, goals, and choices matter (see Crawford 2004; Taliep et al. 2020).

7

Conclusion and Future Directions

In this chapter, we have provided an example of a case study which encapsulated two participatory and engaging processes, CEPAR and CAM that embrace a critical lens to foster social inclusion when conducting research in disenfranchised communities. Through the case study, we learned that to stimulate active participation and inclusion of community members, research has to disrupt orthodox approaches and methods that are embedded in exclusionary practices. CAM, which is embedded within CEPAR, embodies social inclusion and a humanizing ethos, connects community members around a common interest by creating inclusive egalitarian spaces, promotes active participation, and unsilences and affirms subaltern voices. The case study illustrates that social inclusion and its critical role in participatory forms of engagement engenders and promotes liberating and proactive expressions, and can further advance humanizing research, and contribute to social justice, social transformation, community building, and emancipatory and sustainable praxis.

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As a constructive and positive approach to community challenges, CAM foregrounds what communities have, i.e., their assets, resources, and knowledges, viewing community members as experts of their own contexts, providing a safe space for the exploration and pursuit of people’s own interests, and exploring ways to mobilize identified assets to address felt challenges. Within the CAM method, communities are valued as coproducers of knowledge, and are, therefore, centrally involved in the research process with the aim to identify and own the change activities that engender transformation within their community. Therefore, social inclusion needs to be integral to decolonizing research methodologies. It should be included as a critical value or principle in research in order to enhance community engagement and participation of marginalized communities. Social inclusion should also be monitored and evaluated as part of the research process, to see if it contributes to sustainable social transformation.

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Participatory and Community Mapping for Collaborative Working and Knowledge Co-Creation Mei Lan Fang, Judith Sixsmith, Sarah L. Canham, and Ryan Woolrych

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 “Aging in place” or Aging in “the Right” Place? How Is it a Global Challenge? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Why a Participatory Approach? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Participatory and Community Mapping Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Case Study 1: The Kiwanis Towers Redevelopment Project . . . . . . . . . . . . . . . . . . . . . . . 2.2 Case Study 2: Service Mapping in Metro Vancouver for “Housing First” . . . . . . . . . 2.3 Case Study 3: Developing Age Friendly Cities and Communities in UK Cities . . . 3 Making Sense of Our Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Tenets of aging in the right place emphasize the importance of creating accessible and inclusive environments that enable older people to maintain their health and well-being through developing a sense of belonging, autonomy, independence, safety, and security. Creating functional and “meaningful” environments for aging extends beyond altering physical surroundings and requires consideration of the psychosocial and cultural aspects of places and spaces. This chapter examines the role of place in the lives of older people through the use of M. L. Fang (*) · J. Sixsmith School of Health Sciences, University of Dundee, Dundee, UK e mail: [email protected]; [email protected] S. L. Canham College of Social Work and College of Architecture and Planning, University of Utah, Salt Lake City, UT, USA e mail: [email protected] R. Woolrych The Urban Institute, Heriot Watt University, Edinburgh, UK e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_67

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participatory and community mapping as an innovative visual and participatory technique for including the voices of older people in the research process. There is a need for research methods to permit older adult’s expression of their sense of aging-in-place and for researchers to understand what aging in the right place means to older people. This chapter draws on three “place-making with older people” projects in Canada and the UK to demonstrate application of this method in practice to (i) better understand older people’s sense-of-place needs and (ii) articulate place within the context of their immediate environments and the wider community. Data from three community-based participatory research (CBPR) projects highlight how inclusive methods such as community mapping can foster inclusive spaces where older adults have the opportunity to collaborate with a range of community stakeholders in a co-created planning process that uncovers nuanced and deeper meanings of older adults’ sense-of-place. Keywords

Participatory and community mapping · Community engagement · Collaboration · Equity and inclusivity · Healthy aging

1

Introduction

This chapter draws on three “place-making with older people” projects undertaken in Canada and the UK to demonstrate the use of participatory methods in practice for: (i) enhancing understandings of older people’s sense-of-place and (ii) articulating these understandings within the context of their immediate environments and the wider community. Guided by principles of community-based participatory research (CBPR), this chapter presents how the participatory and community mapping method facilitates inclusive engagement across a wide range of stakeholders, in a process of collaborative planning and co-creation (Jagosh et al. 2015). Importantly, the application of CBPR principles (equity, inclusivity, empowerment, partnership, and co-creation) fostered inclusive and collaborative working when generating ideas about and solutions toward creating age-friendly environments (Fang 2020). Shaped by CBPR, participatory and community mapping methods were selected to help formulate and progress opportunities for older people to voice their thoughts and feelings about how to age well in the right place – revealing in what ways physical, psychosocial, cultural, and emotional place supports can help older people to live longer with better quality lives at home and in the community. The purpose of this chapter is, therefore, to examine the role of place in the lives of older people through the use of participatory and community mapping as an innovative visual and participatory technique for including the voices of older people in the research process. Three research projects are presented as case studies to demonstrate the use of participatory principles and mapping methods for optimizing multi-stakeholder engagement and ensuring the inclusion of diverse voices, partic ularly those which are seldom heard. A common aim across the case studies is an

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emphasis on addressing global challenges aligned with UN Sustainable Development Goals 3 (to “ensure healthy lives, promote wellbeing for all at all ages”) and 11 (making “cities and human settlements inclusive, safe, resilient and sustainable”), through the use of inclusive and participatory methods to understanding health and age-friendly environment research which generates real world impact (United Nations 2019).

1.1

“Aging-in-place” or Aging in “the Right” Place? How Is it a Global Challenge?

Aging-in-place is a well-known concept in urban studies and environmental gerontology (Costa-Font et al. 2009; Wahl and Oswald 2010). It refers to the “ability to live in one’s own home and community safely, independently, and comfortably regardless of age, income, or ability level” (Centers for Disease Control and Prevention 2013, p. webpage). The concept originates from the interaction between older people and their living environment and reflects the challenges, barriers, and accumulation of changes over the life-course (Vasunilashorn et al. 2011). More recently, aging-in-place “has been discussed as a phenomenon, goal or process” focused on both “place as a dwelling” incorporating broader aspects of home and belonging including “relationships in the community” (Ahn 2017, p. 1). Traditionally, aging-in-place has been assumed to be a positive experience for older people. However, research has indicated that when the built environment, for example, a house or apartment, and community surroundings, such as services and supports can no longer adequately accommodate a person’s everyday needs, the experience of aging-in-place can become negative (Sixsmith and Sixsmith 2008). At the individual level, for example, home can become a vulnerable and isolating place, especially if older people are not able to benefit from living in a safe and secure home and in a residential community with access to health and social services and amenities (Angus et al. 2005; Hillcoat-Nalletamby and Ogg 2014). At the household level, individual experiences are also influenced by decisions made at the structural level. This can occur when redevelopment policies, initiatives, and housing renewal programs fail to meet the needs of older adults, such as through a lack of awareness of age-specific place-based needs, funding and resources, and political pressures for cost saving, which fail to create accessible environments (Wong 2013). To build more effective age-friendly environments, therefore, requires a shift in thinking from aging-in-place toward aging in the right place (Golant 2015). Aging in the right place progresses existing aging-in-place conceptualizations (Golant 2015). First, it contests the idea that remaining in the same place is the best option for older adults. Second, it encourages understandings of what the right place is, to determine which environments are more welcoming, vibrant, and promote a sense of belonging for diverse older people. Creating age-friendly environments that cater to the individual, specifically older adults, is a matter of urgency as there are approximately 962 million persons over the age of 60 years worldwide (United Nations 2017). The dramatic increase of older

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populations globally has raised questions on how to best design and develop environments for older people including adequate housing and community supports to ensure good quality of life until the end of life (Ahn 2017). Failure to do so could result in detrimental individual, community, and societal outcomes. For example, the World Health Organization (2016) has raised concerns about the growing health and social care costs that includes direct (e.g., medical supplies) and indirect costs (e.g., work loss) for individuals and carers, as well as societal costs due to increased hospitalization, service demands, early admission to long-term care, and reliance on social security. The pressures for ensuring appropriate care for older people can result in deterioration of the mental and physical health and well-being of individuals such as family members, friends, carers, and service providers due to decreased morale when they are unable or are struggling to provide adequate care for themselves and their loved ones (Murfield et al. 2020). When considering possible outcomes of not altering the status quo, it becomes clear that providing supportive age-friendly environments that include appropriate housing and community resources is crucial. However, responding well to the diverse needs of older people is complicated. Older people are a heterogeneous group, so there is no one-size-fits-all solution. Older peoples’ everyday life experiences are shaped by interrelated social factors such as age, gender, race/ethnicity, ability, culture, and socioeconomic position (Sixsmith et al. 2019). As such, creating innovative ways to develop age-friendly environments for a range of older people living across different global and cultural contexts has been identified as a “wicked” problem (Fang et al. 2018b), referring to a societal quandary that is deeply complicated with no perfect resolution, and that has neither conclusive nor objective answers (Rittel and Webber 1973).

1.2

Why a Participatory Approach?

Sense-of-place, indicating the human connection to place, is the bond that people form with their environments as they establish feelings of belonging and place identity, e.g., the good neighbor; attachment to the community; and a social support network connected to a place (Scannell and Gifford 2010). One aspect of the “wicked” problem introduced in this chapter is that, often, sense-of-place perspectives are not well articulated in urban redevelopment and regeneration opportunities, suggesting that the social, cultural, relational, and community aspects of place that influence good quality of life, and shape the everyday lives of older adults, are frequently overlooked in the urban planning and real estate development process (Hillcoat-Nalletamby and Ogg 2014). This is perhaps due to a lack of knowledge and resources. Both are arguably linked to insufficient multi-stakeholder involvement across local service providers, local government officials, planners and developers, and people living in the community to provide the necessary knowledge for identifying promising solutions and acquiring community assets for reducing resource gaps (Polk 2015). According to Raymond, Kyttä, and Stedman (2017, p. 4), “it is the shared performance of individuals (e.g., by inventing, constructing, and

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deconstructing structures) that turn lived space into a special place.” Their assertion suggests that including people of different backgrounds, experiences and expertise (such as older people, health and social care providers, housing providers, and business owners) in the research process can generate a breadth of valuable insight and practical solutions for creating healthy, age-friendly environments. When multiple perspectives are not consulted, there are lost opportunities for ascertaining holistic understanding of people–environment relations, factors, and resources that can bring meaning to place and producing supportive environments. The end result can be extremely important for older people who indeed are more vulnerable to environmental change; and are living with vulnerabilities such as decreased functionality, poor health, living alone, and/or financial challenges (United Nations 2017; World Health Organization 2011). For some older people, urban development initiatives that have overlooked age-related vulnerabilities has meant that older people are forced to prematurely relocate into long-term care facilities (Bekhet et al. 2009); live alone with limited social support and social interaction (Aspinal et al. 2016); or become homeless when they are no longer able to afford to live in their homes (Maglione et al. 2018). The research case studies presented in this chapter each attempted to tackle different problems associated with modern-day urban development initiatives by using community-participatory principles and participatory and community mapping methods to ensure community voices inform the planning and development process. The first case study focuses on a 3-year CBPR project to evaluate the redevelopment process and co-creation of livable age-friendly home and community environments for low-income older adults transitioning into high rise condominiums in Richmond, British Columbia (BC), Canada. Participatory community mapping workshops (PCMWs) were used. Workshop activities involved using a map of the neighborhood surrounding the redevelopment site to (1) reveal experiences of local community members, (2) identify facilitators and barriers to accessing the built environment, (3) set up group walk-alongs in the community to access experiences of place, and (4) co-create place-based solutions. The second case study was also undertaken in Western Canada with the aim of enhancing functional understandings of the system of support services necessary for “Housing First” implementation across Metro Vancouver, BC to better support the housing, health, and well-being of people experiencing homelessness. In this case, 13 community service mapping workshops were hosted by the research team in different municipalities, and brought together service providers and persons with experiences of homelessness to describe and understand resource difficulties and gaps. Last, case study 3 used community mapping to understand how sense-of-place is experienced by older people living in transformational urban environments in the UK. Community mapping workshops were undertaken in three neighborhoods in three cities to identify opportunities, challenges, facilitators, and barriers to social participation, healthy living, and being active and engaged for older people. The workshops used a visual map representation of their community and discussions revolved around community values, understanding, and interactions with place to cultivate solutions, which enable aging in the right place.

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The Participatory and Community Mapping Method

Participatory and community mapping is a method that stems from Participatory Rural Appraisal, an approach developed in the 1980s to develop deeper understandings of the everyday experiences of people who lived a rural life (Chambers 1994). This approach comprised of methods, denoted by Chambers (1994, p. 1), which “enable local people to share, enhance and analyse their knowledge of life and conditions to plan and act.” The mapping method is also known for its alignment with CBPR or activist participatory research that derives from earlier works of Freire (1990). Freire’s research on the pedagogy of the oppressed (Freire 1990) maintained that community members have the knowledge and expertise to self-actualize and determine their own reality. This intellectual movement has been widely influential despite remaining a minority view among industry professionals (e.g., architects, planners, health professionals, and technology developers). It has also resulted in a constellation of approaches and methods that strive to not only collect data, but also to enhance “people’s awareness and confidence, and to empower their action” (Chambers 1994). Hence, a key strength of the mapping method is the accessibility and inter-activeness of the process itself through community-engaged practice. Participatory and community mapping is also informed by Indigenous traditions and practices and can consist of a range of activities such as: drawing; diagramming; recovery of place-history; valuing and applying folk culture; collective working; family meetings; socio-dramas; and the production and diffusion of new knowledges transmitted through written, oral, and visual forms including systematic “go-along” walks and observation (Cornwall et al. 1993). Application of participatory and community mapping is articulated below in three research case studies to demonstrate its use in different geographic and cultural contexts.

2.1

Case Study 1: The Kiwanis Towers Redevelopment Project

2.1.1 Context This research study was undertaken in Richmond, BC, Canada, a municipality of Metro Vancouver. Amid increasing housing insecurity, the experience of being forced to leave a familiar home and community, alongside the pressures of having to create a new home and reintegrate into a new community, can hinder the ability for older adults to age well in place (Greenfield et al. 2015). The issue of precarious housing and forced relocation is more prominent in municipalities with growing numbers of older people. Richmond, a municipality of Metro Vancouver, for example, has a growing older adult population consisting of approximately 40– 50% middle-aged and older adults, i.e., over the age of 45 years of age (Metro Vancouver Board of Directors 2019). Currently, the municipality of Richmond provides various housing options, such as social housing for low-income persons, assisted living, and long-term care, to accommodate older adults who are no longer able to live at home or in their community due to age-related health issues or lack

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of affordable accommodations (Fang et al. 2018a). However, these government subsidized homes are limited and the buildings are generally older and in poor condition requiring repair, retrofitting, or redevelopment (Fang et al. 2018a). Costs to repair, retrofit, and/or redevelop older buildings have also risen alongside elevated housing prices (Fang et al. 2018a). Shaped by these contextual issues, this research case study examined an affordable housing redevelopment initiative that sought to address issues of affordability while ensuring sense-of-place when redeveloping housing for low-income older people. The aim of the research is to evaluate the redevelopment process and co-create livable age-friendly home and community environments with and for older people who have limited financial means, as they moved from cottage style apartments into high rise condominiums, known as the Kiwanis Towers.

2.1.2 Mapping Method In 2015, a series of four participatory community mapping workshops (PCMWs) attended by more than 40 participants were implemented 6 months after the first cohort of older adults had moved from cottage style apartments into high rise condominiums (Fang et al. 2016). The PCMWs consisted of mapping exercises and walk along interviews conducted with residents; housing and health service providers; community organizations; representatives of the municipal government; and other stakeholders. The PCMWs created a platform for older adults to share their ideas, and recommendations for the redevelopment. Their purpose was to identify older adults’ needs for community services and supports as well as map the condominium’s amenity space. PCMWs facilitated awareness raising (among older people, service users, and developers) of community issues, local decision-making, and empowered older community members to be active place-makers in the redevelopment process. Community engagement activities during PCMWs involved presentation of the ideas surrounding aging-in-place within high rise condominiums, presentation of resident stories (drawn from previous interviews and photovoice sessions), and experiential group walks around the community to map leisure, service, and amenity spaces. Large scale, aerial maps and plans were used to focus attention on the local community and Kiwanis Towers. The maps displayed Kiwanis Towers and the surrounding neighborhood, which visually highlighted different local spaces and places where participants interactively and collectively identified important services and resources. Participants annotated the maps with perceived service gaps and desires for future services and other resources and amenities that would support them to age well in place. The workshops concluded with discussions of aging-in-place at home and in the community and opportunities for creating resources and supports for aging well (Image 1). 2.1.3 Outcomes Through the use of participatory and community mapping and the implementation of PCMWs, older adults were able to establish their role as active place-makers, empowering them to be more than just tenants living in a building (Fang et al. 2016) as their data was used to influence design of activities in the Towers (Sixsmith

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Image 1 PCMW activity with older people annotating large scale, aerial maps

et al. 2017). Findings from PCMWs included the identification of needs of older adults alongside potential solutions to overcome cross-cultural challenges, which were actioned as priority items by local service providers and the municipal government. Guided by CBPR principles, the PCMW process prioritized the view that knowledge is dynamic, multifaceted, and often embedded in social processes. Discussions during PCMWs brought to the forefront the everyday realities of older adults inside and outside Kiwanis Towers and their need for appropriate spaces and places that enable their functionality and well-being, including how bright rooms can cause dizziness and disorientation resulting in falls and injury; dark rooms and communal spaces can be trip hazards and difficult to negotiate, especially for people with visual impairments; living on the 16th floor can mean being unable to get down 16 flights of stairs during a fire or a fire drill; the limited comprehension of emergency information which were provided only in English; being frightened to cross a busy road to get to the shopping center because there is no traffic light; and being unaware of the extent of memory loss due to a lack of social supports. These examples were reported by older people to have shaped the organization, development and planning of the building itself, and their immediate neighborhood, including the installation of a traffic light directly in front of Kiwanis Towers. Overall, PCMWs created a unique opportunity and space for the co-creation of shared solutions together with local services providers and staff members in the municipal government — individuals who would typically make the decisions for older adults, not with them.

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Case Study 2: Service Mapping in Metro Vancouver for “Housing First”

2.2.1 Context At the height of the housing market surge in 2016 (Metro Vancouver Board of Directors 2019), housing insecurity also became prevalent, most severely impacting those in positions of vulnerability (e.g., single mothers, low-income older people, youths living with substance use disorders). The Metro Vancouver Data Book reported that in 2016, over 15,000 households were at great risk of becoming homeless with the primary group being individuals 65 years of age and over (Metro Vancouver Board of Directors 2019). During this time, the social housing waiting list for seniors’ housing rose by over 100%. As one approach to addressing homelessness in Metro Vancouver, Housing First was implemented as “a systems approach” that coordinated immediate access to housing and supports for individuals experiencing chronic or episodic homelessness through a collective, multisystem and cross-sectoral process (Canham et al. 2018). Having sufficient access to individualized case management and support resources is considered essential for successful Housing First delivery (Canham et al. 2019a, b); yet there was no formal documentation to describe and understand inequalities in access to resources between and within communities in Metro Vancouver. Hence, research was undertaken to enhance functional understandings of the support service system necessary for Housing First implementation across Metro Vancouver. Doing so enabled service providers to identify their needs and resource gaps, which is integral to being able to advocate for necessary support and resources. 2.2.2 Mapping Method Participants included local stakeholders who had a vested interest in the Housing First throughout Metro Vancouver (e.g., organizations who were currently implementing or considering implementing Housing First and clients or potential clients). Service providers represented government agencies, housing associations, community centers, charitable organizations, and health authorities. In 2016, ten service mapping workshops involving 215 participants across 10 Metro Vancouver municipalities were held (Canham et al. 2018). Service mapping workshops with more than 150 participants were conducted in Langley (n ¼ 19), Richmond (n ¼ 11), the North Shore (n ¼ 10), New Westminster (n ¼ 13), the Tri-Cities (n ¼ 31), Surrey (n ¼ 14), Maple Ridge (n ¼ 14), Vancouver (n ¼ 17), Burnaby (n ¼ 14), and the Downtown Eastside (Vancouver) (n ¼ 20). Another three workshops focused on population-specific Housing First needs of women (n ¼ 19), youth (n ¼ 16), and older people (n ¼ 17). The workshops led to rich discussions of Housing First services and supports available in different regions or for different populations, with a focus on how the system functions and what gaps and weaknesses exist. At the workshops, participants directed the mapping process; and by placing sticky notes on pre-printed maps, participants generated visual representations of where housing support services and resources were located in their community and identified

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Image 2 A map output from a community service mapping workshop

service gaps. Researchers facilitated discussion about how the mapped services functioned in different regions (e.g., accessibility, gaps, communication, and so on). Example questions included: What difficulties are there in using these services and supports? What helps you access services and supports in the community? Where are there gaps in service provision? Where do you get these resources that are not available in your area? To enable depth of understanding, researchers documented key observations from each workshop in field notes and post-event reflective summaries (Image 2).

2.2.3 Outcomes Through the mapping process, four key barriers to obtaining and maintaining Housing First supports were identified: access challenges; individual-level challenges; organizational challenges; and sociopolitical challenges (Canham et al. 2018). Access challenges reported across Metro Vancouver included long waitlists; unaccommodating service hours; transportation difficulties, and having to travel to other communities; lack of access to telephones or computers; and limited knowledge and misinformation about services and system navigation. Multiple individuallevel challenges were reported, highlighting the uniqueness of those who were vulnerably housed or who required services to support their housing. For instance, many clients reported having mental health, domestic violence, or drug addiction issues. Individual-level challenges included hesitance to seek assistance; lack of

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readiness to participate in programs; difficulty completing forms; language and cultural barriers; and antisocial behaviors. Organizational challenges shaped access challenges in that clients were required to demonstrate severity of crisis or need; required to be attached to mental health teams; and limited on their shelter stays. Additional organizational barriers included: limited program capacity; high service provider workload and turnover; lack of service provider willingness to work with certain clients; and service providers working in silos. Lastly, the sociopolitical climate of communities was reported to present difficulties in the delivery of Housing First services and supports. While some local governments were supportive of affordable housing initiatives, there was not consistent support across Metro Vancouver. Additional sociopolitical challenges reported by participants included limited funding for services and supports; denial of homelessness severity; community pushback and not-in-my-back-yard ideologies; and stigma toward persons experiencing homelessness.

2.3

Case Study 3: Developing Age-Friendly Cities and Communities in UK Cities

2.3.1 Context Global population aging and urbanization have raised challenges in terms of how we can best design communities to support an aging population. Urban areas offer potential advantages in supporting older adults to age-in-place including proximity to amenities, access to social and cultural supports, and opportunities for civic participation. However, as the World Health Organization (2019) has highlighted, a well-functioning urban environment is not only about the availability of health, social, and cultural resources, but also about ensuring navigation of the urban landscape and presenting an age-friendly environment for social participation and active, healthy aging. As well, integrating sense-of-place into the built environment is essential for supporting active aging, ensuring that older adults can continue to make a positive contribution in their communities and potentially reduce health and social care costs (Woolrych et al. 2019). However, we know little about how experiences of aging differ across different urban, social, and cultural contexts. Models of age-friendly cities and communities have benefitted from case study research to inform how urban environments can be designed across the developing and developed world. In addressing this research gap, Place-Making with Older Adults: Towards Age-Friendly Cities and Communities (http://www.PlaceAge.org) was an Economic and Social Research and Newton funded project (Woolrych et al. 2019) conducted in the UK, Brazil, and India, which addressed three specific research questions: (1) How is sense-of-place experienced by older adults from diverse urban neighborhoods? (2) What services, amenities, and features are needed to create age-friendly communities that promote healthy cities and active aging in different urban, social, and cultural contexts?, and (3) How can communities be designed to better integrate the sense-of-place needs of older adults across different urban and cultural contexts? The aim of the research was to develop place-making

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tools and resources, which are essential for designing age-friendly environments for older adults (PlaceAge Project Team 2020). PlaceAge adopted a case study approach including interviews, photovoice, and go-along interviews with older people and the research team used participatory and community mapping to explore older adults’ experiences of aging across diverse urban, social, and cultural contexts (PlaceAge Project Team 2020). The case study presented here draws on data collected in three UK neighborhoods (low, medium, and high income) in Edinburgh, Glasgow, and Manchester.

2.3.2 Mapping Method To develop understandings of how older people value, understand, and interact with place and to identify the important features and aspects of the environment that embody place, participatory and community mapping sessions were undertaken with older people, service providers, and policy and practice professionals working with and for older adults in each community (Woolrych et al. 2019). The mapping sessions (held in 2017) consisted of three key questions that guided the participatory and community mapping discussions: (1) What are the places and spaces in the community that are valuable to you? (e.g., services, amenities, community venues, parks, and green spaces) (2) What are the key barriers and facilitators to an age-friendly community? (e.g., access, availability, positioning, and so on), and (3) What is necessary to achieve an age-friendly community with respect to providing opportunities for active aging? (e.g., considering future interventions/changes to outdoor spaces, services, and amenities and places and spaces). During the mapping sessions, participants gathered in small groups of five to six participants and engaged in three rounds of discussion (25–30 min) guided by the questions and moderated by a group facilitator. On each table, there was an A0 size aerial map of the community along with flip-chart paper, post-it notes, stickers, and pens and markers for the participants to make notes and doodles while engaging in formulating answers for each question. After each round was completed, group facilitators presented key points covered in their discussions, which were then recorded on flipchart sheets. This also acted as an opportunity for older people to hear and discuss issues that had arisen at other tables, providing further data for the project (Image 3). 2.3.3 Outcomes The participatory and community mapping sessions helped to identify existing services; barriers and facilitators to access as well as opportunities for active, healthy aging; highlighting place affordances; positioning of amenities; and facilitators to mobility and walkability (PlaceAge Project Team 2020; Woolrych et al. 2019). Key themes identified by older people living in Glasgow, Edinburgh, and Manchester were the need for: (1) communities to be better connected and offer opportunities for older adults to feel useful, socially engaged, and able to contribute to society; (2) environments which are intergenerational and inclusive of people of all ages; (3) enhanced supports to help older people to live at home surrounded by support networks and services to sustain a high quality of life; (4) opportunities that enable meaningful social participation among older people; (5) quality green spaces that

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Image 3 A group dialogue as part of the mapping activity to review key points of discussion

have a positive impact on people’s health and well-being; (6) ways to help older people feel that they belong and are part of the community; (7) urban outdoor spaces that link to services, facilities, and amenities; (8) quality, walkable outdoor spaces that contribute to older people’s health and well-being; (9) access to information about what is going on in the community; and (10) a community that is engaged with a shared goal of fostering healthy active aging. These findings were used to inform policy and practice professionals in a subsequent series of practice and policy workshops.

3

Making Sense of Our Studies

As part of the CBPR philosophy of working, collaborative methods, such as participatory and community mapping are used to facilitate partnership working through systematic inquiry, especially with those affected by the issue being studied, to co-create solutions that address social and/or health-related challenges via actionoriented change (Green et al. 1995). A key strength of working according to CBPR principles is the “integration of researchers’ theoretical and methodological expertise with non-academic participants’ real-world knowledge and experiences into a mutually reinforcing partnership” (Cargo and Mercer 2008, p. 327).

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The operationalization of CBPR through the use of participatory and community mapping in the three research case studies meant that older people became active change- and place-makers in their community (Fang et al. 2016). Participatory and community mapping (also known as community-based mapping), is an approach that facilitated the creation of “tangible displays of people, places and experiences that make up a community” (Corbett 2009; Fang et al. 2016, p. 223), particularly on the basis of local residents’ expert knowledge and perspectives of their living environment. In recent years, there has been a stark increase in the number of studies that apply community-based mapping techniques to gather and analyze local experiential knowledge and promote civic engagement in decisionmaking processes. The notable strengths of participatory and community mapping techniques has meant that this method is being utilized across diverse disciplines including natural resource management, land use, and claims (Bao 2005; Cronkleton et al. 2010; Fox 2002); youth health and well-being (Blanchet-Cohen et al. 2003; Literat 2013); perceptions of crime and safety (Liebermann and Coulson 2004; Matei and Ball-Rokeach 2005); drug trafficking (Chambers 2006); and health care (Smith et al. 2017). In all three case studies, the participatory and community mapping process provided a valuable visual representation of how a community values, understands, represents, and interacts with place and identified important features (e.g., services, amenities, open spaces) within the environment that make a community a positive place to age (Corbett 2009). Key strengths of participatory and community mapping include the breadth of inclusive and accessible activities, which allowed for feelings, senses, and more intangible aspects of age-friendly places to be captured, and provided an interactive approach to knowledge production, moving from description to depiction and representing features on a map through talking and drawing. As a part of the mapping exercise, the large aerial maps displaying the immediate environment enabled participants to interactively and collectively identify locally available services and resources. Participants were able to actively engage in the research process through annotating the maps with perceived service gaps and services needed to age well in place. Such annotations were effective in helping people with little or no expertise in research, planning, or design participate in visualizing, mapping, and discussing challenges, unmet needs, and forging promising solutions. Because these activities were hosted in the local community, participatory and community mapping activities were often led by both older people as well as community service providers, which grounded the community and planning solutions in local knowledge produced by and with all local stakeholders. As a result, the elitism that often surrounds the traditional academic data collection process was minimized. Of note, despite the effectiveness of maps to enhance inclusivity and balance power differentials through Indigenous problem-solving techniques and practices (Cornwall et al. 1993), more recent Eurocentric development and use of maps have been critiqued as being re-enforcers of disproportionate power dynamics (Wood 2010). To address the view that the maps may be less accessible to some than others, in each of the case studies, the research facilitators provided a detailed explanation of

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the project and process such as the purpose of the mapping exercise; what the map represented; and how it can be used advantageously to communicate the gaps in current community spaces in the participant’s native tongue (e.g., English, Mandarin, Cantonese, French). Even though research facilitators were present, their role was to facilitate discussion and not lead them. The research facilitators encouraged participants to situate their own knowledge and experiences relative to the map by prompting the recovery of important place histories such as past experiences of hardship due to service gaps; housing challenges; social isolation; and opportunities for health and well-being. In all three case studies, the recovery of past and present place challenges during the mapping exercise created some disagreement among stakeholders. Internal community conflicts surfaced as stakeholders debated over whom the services were created for and who the service providers prioritized. For example, in case studies 1 and 2, it is important to note that Metro Vancouver is a place where people have experienced historical trauma and during the post-colonization era, Metro Vancouver’s population was of 90–95% White European descent. Since the late 1970s, the city gradually experienced an increased fluctuation in foreign migrant groups. Naturally, the city evolved as signage, food, amenities, building design and structure as well as various services, such as social, health, grocery, and hospitality, grew both more culturally tailored and responsive to the needs of the dominant cultural group, which were of Chinese origin. For some older adult participants who were native to western practices, beliefs and values, the notion of having increasingly more bilingual, culturally tailored services was perceived as threatening to their own cultural needs. Akin to all three case studies, even though the maps and the mapping process served its purpose of generating input, discussion, and debate across a diversity of groups, at times, emotions that arose signaled how the power dynamic was neither neutral nor unproblematic. This was highlighted by the fact that participants felt empowered by the process and the discussions and actions that ensued while others felt disempowered. Such a difference in experiences from a process designed to facilitate inclusivity and collaboration may have been influenced by social positioning at the individual level, which shaped understandings of whose voices are most important, what is available, what might be possible in their own community and whether this was fair or unfair or just or unjust. Essentially, the maps became a token of power (Harley 1989). Those who felt more control over the maps and the discussions that emerged also felt they had benefitted more from the map-making process because they were able to have the most influence over the resultant outcomes. For some participants, the practical map-making aspect was perceived as not useful because the top-down aerial view of the maps did not necessarily coincide with how older people perceived the community at street level. However, one useful technique used in case studies 1 and 3 was the community walk along, which helped older people become involved through physical activity while enabling them to visualize the community at street level according to their own experiences and actions, and thus created further opportunities for discussion. The community walk

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along added a further visual dimension to the participatory and community mapping exercise. Known as a go along interview, researchers accompanied individual informants on a participant-led tour of their immediate environments such as local neighborhoods (Carpiano 2009). The community walk along method has been demonstrated, in the literature, to be crucial for enabling seldom heard voices (Gaventa 1982). For example, through the process of this participant-led technique, Appalachian communities gained confidence in their own unique knowledge and abilities, and were empowered to take control of their lives through community mobilization, participation, and political action (Gaventa 1982). The idea of standing together is also reminiscent of several social movements inspired by Lefebvre’s urge for urban transformation through the collective power of local citizens to enact their rights to the city (Lefebvre 1966). Hence, in addition to identifying significant features on a map (i.e., the necessary supports and services required for older adults to age well in a new community), groups of older people were empowered to lead service providers and members of the local government on a tour of their neighborhood, and their new homes. The empowerment of older people to lead the community walk along was a positive disruption of the traditional power dynamics between the researcher and the participant. Aligned with principles from CBPR, this was a key strength of the community walk along method. Another, more practical benefit of the walk along method was that it created an opportunity for physical, social engagement activity, as sitting at a table restricted people from physically reaching parts of the map they were concerned about. Nevertheless, the community walk along method is not without limitations. High-level stakeholders, such as government workers and service providers as well as those individuals who were more familiar with the neighboring area, found the walk along to be futile as they expressed not having gained new insights from the process. Furthermore, older people with some mobility challenges did not wish to participate. This created an added ethical challenge as these older adults remained in the space where the workshops were held, which meant that their voices were not as well represented in the case study. Finally, due to the sheer size of groups, it can be difficult to explore the more in-depth individual sensory aspects of place and memories. Future research might consider how to provide more inclusive approaches and methods such as drive-alongs, e-scooters, support for wheelchair users, or virtual local tours.

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Conclusion and Future Directions

In this chapter, we have discussed how the use of participatory approaches that constitute participatory and mapping methods can provide opportunities for knowledge input from people who live and work in the community (such as older people) who are typically excluded from the research, planning, and development process. Often, traditional methods which use less accessible data collection mechanisms (e.g., online surveys requiring technology devices with little or no support) can limit our understanding of community as well as constrain our findings to older people

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who are comfortable with technology. Informed by CBPR principles, the participatory and community mapping method was felt to be empowering for participants in providing a platform for people to find their voice while at the same time allowing for a more contextually aware understanding of aging in place to emerge. Building on community strengths created a shared awareness and understanding of community assets, and ultimately provided local communities with an active voice for decision-making and collective action toward a common goal. A key advantage of using nontraditional data collection techniques (as presented in the case studies) was through being able to challenge the existing status quo concerning knowledge generation mechanisms; which often valorize certain types of knowledge and knowledge production processes over others. This was strongly enforced by an ethos embedded at the outset of all three CBPR projects, which questions where evidence and knowledge reside, forefronting the importance of experiential knowledge among older people. The research processes demonstrated in this chapter prioritized the view that knowledge is dynamic, multifaceted, and embedded in social processes. Hence, to expose the social nuances of how aging well in place is perceived and how it can be facilitated within home and community, collaborative research opportunities were created. Involving older adults in the development and maintenance of their immediate surroundings (demonstrated in Cases 1 and 3), as well as members of the service landscape (as in Case 2) to acquire understandings of local resources, was crucial for developing urban environments that facilitate health and well-being for all. However, achieving this objective required a shift from developing urban places for people to building meaningful environments with and by those who live and work in the community (Sixsmith et al. 2017). Yet, historical planning approaches have often used a top-down approach with planning professionals, architects, and designers perceived as the experts and decision-makers. CBPR allowed researchers of the three projects to challenge the synoptic view of planning and development (Lane 2005), which assumes a rational, one-size-fits-all approach to interventions. Undoubtedly, there exist inadequacies in traditional research and planning methods for acquiring the necessary and nuanced insight into the lives of older people relocating home in old age. Hence, participatory and community mapping can be a forward-thinking methodological direction for enabling opportunities toward alternative planning engagement techniques. In particular, the value of creating participatory forums in which members of the community, planners, developers, and architects can come together to discuss aging well in place opportunities, demonstrates the value experiential knowledge in building future age-friendly environments. Through the application of participatory and community mapping, the voices of seldom heard participants (such as older adults) were included in the planning process. Nevertheless, more remains to be done in order to improve the inclusion of older people who are frail or housebound, perhaps supported by forms of e-participation through virtual platforms. The delivery of participatory and community mapping methods, virtually, need further development to be a viable and fruitful mechanism of inclusion.

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Enabling the “space” and platform to facilitate cross-sectoral, interdisciplinary, and lay dialogue enhanced understandings of older adults’ sense-of-place. Data acquired through mapping activities and “walk alongs” provided multiple vantage points and facilitated the co-creation of place knowledge and solutions that included the commencement of a social programming led by older adults in the new build (Case Study 1); renewed opportunities for social engagement between individuals from different sociocultural backgrounds (Case Study 2); and lasting partnerships across international stakeholder groups who have a vested interest in the health and well-being of older adults (Case Study 3). Call for joint interdisciplinary international research collaborations is one future avenue that can be explored to maintain and build on these partnerships. This is important for maintaining capacity building and ensuring continued impact and long-term sustainability. By and large, participatory and community mapping was demonstrated to be an effective approach for collective working across diverse stakeholders: housing providers, developers, civil servants, service providers, researchers, and, most importantly, older adults. The CBPR approach allowed for a more communicative approach to understanding priorities and co-creating solutions, which respects the positions of all involved. Multiple partnerships were formed that contributed to the co-creation of solutions and ideas with mutual goals of improving community health and social outcomes and knowledge production and exchange. Collaborative and inclusive features of a CBPR approach enabled strategic planning to occur among stakeholder groups with varying expertise, agendas, and interests. Methodologically, participatory and community mapping guided the process for listening to various perspectives and integrating a range of expertise within the development of solutions to support aging in the right place. Yet, there is still room for growth and improvement in using participatory and community mapping for research in practice. In conclusion, participatory and equitable modes of facilitating knowledge production and enabling voice has raised much concern and controversy regarding democratic implications, practical value, and scientific quality in urban planning and design initiatives and research. However, neglecting tacit, experiential knowledge as evidence is not only a disservice to science (i.e., through the omission of evidence), but it can also result in partial or inappropriate solutions (i.e., interventions that are not fit for purpose) to complex problems.

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Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Critical Feminist Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Intersectionality and Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Situating the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 First Meeting/First Semi structured Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Second Meeting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Third Meeting/Second Semi structured Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Indirect Questioning: Disrupting Narratives of Homelessness . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Possessions and Sensory Approaches: The First Semi structured Interview . . . . . . . . . . . . . . 6 Visual Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Photovoice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Photo Elicitation: The Second Semi structured Interview . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Australia has an aging population, with housing insecurity and homelessness an increasingly significant issue, particularly for older, single women. An in-depth understanding of the issues facing older women experiencing homelessness is urgently needed. Significantly, experiencing homelessness for the first time in later life can leave women with feelings of overwhelming shame and stigma. This chapter discusses visual and sensory methods that can be used to access the multisensory nature of the lived experience of homelessness which can be difficult to reach through words alone. It begins by highlighting the current gap in research undertaken with older single women and homelessness and argue the need to include their lived experiences. Situated in a critical feminist research V. Dervisovski (*) Institute of Health and Sport, Victoria University, Melbourne, VIC, Australia e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_68

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framework, using an intersectional lens, the chapter examines the way in which visual methods can be extended into an engagement with other senses, as a way of creating “multimodal” research processes. Visual research methods, such as photovoice and photo elicitation, offer collaborative and empowering research processes. Similarly, “the sensory,” which has been slow to filter into the methodological consciousness of researchers, allows for a tactile engagement with everyday possessions, facilitating engagement with experiences not accessible through words alone. The way in these methodological approaches can be used to understand the first-time experiences of older single women experiencing homelessness will be discussed, highlighting some of the ethical challenges posed by the research design of this study. Keywords

Older single women · Homelessness · Sensory research · Visual research · Photovoice · Possessions · Intersectionality · Photo elicitation · Visual ethics

1

Introduction

This chapter discusses the use of visual and sensory methods to access the multisensory nature of the lived experience of homelessness among single older women that can be difficult to reach through words alone. The author’s work as a social worker in various housing and homelessness programs, over the past decade in the west of Melbourne, has provided the impetus for the study upon which this chapter is based. Further highlighting the need for qualitative research processes which privilege the subjective lived experiences of people who experience homelessness. Despite the advantages of qualitative research, and its congruence with exploring women’s experiences of social issues, there has been limited research undertaken in relation to single, older women’s first-time experiences of homelessness which have included their voices. Instead, there has been an emphasis on examining service providers’ experiences and perspectives in relation to “solving the issue” and policymakers, leading to a marginalization of women’s perspectives and experience (Petersen and Parsell 2015; Petersen 2015). Australia’s aging population, and the risk of housing insecurity and homelessness, is an increasingly significant issue, particularly for older women. A comparison of Australian census data from the 2011 to 2016 revealed a 31% increase in the number of older women experiencing homelessness. The Australian Bureau of Statistics (ABS 2016) defines homelessness as lack of suitable accommodation alternatives, a dwelling that is inadequate, and lack of, or short-term, housing tenure and spaces which do not allow for social relations. While acknowledging this definition, this chapter also identifies homelessness as a material condition, embedded in structural inequality, as well as a construct, which takes place within the ideology and discourses of neoliberalism privileging ideas of “self responsibilisation” (Kostecki and Macfarlane 2019, p. 121).

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The true prevalence of homelessness in older, single women is hidden in the census data, as the women often “couch surf” or sleep in their cars due to safety concerns. They may not approach housing services and are therefore underrepresented in statistical data, and homelessness research, culminating in “no stats, no homelessness” (Sharam 2010, p. 21). In this way, homelessness among older women is “hidden,” impacted by shame and guilt they may experience in seeking help (McFerran 2010; Robinson and Searby 2006; Darab and Hartman 2013; Sharam 2011). With a more recent phenomenon becoming apparent, women who have been securely housed find themselves experiencing homelessness in later life for the first time. There are significant gaps in understanding older women’s first-time experiences of homelessness, which demand exploration through ongoing research (Petersen 2015; Petersen and Parsell 2015). This is of significance as prolonged experiences of homelessness can impact on women’s mental and physical well-being (South 2019; Robinson and Searby 2006), leading to “deprivation” and “increased morbidity, disability and medical frailty among older homeless cohorts” (Petersen and Parsell 2015, p. 368). A greater emphasis on engaging in research which includes the lived experiences of older, single women and homelessness is needed, especially those who find themselves homeless for the first time (Sharam 2017; Darab et al. 2018; Batterham et al. 2013; McFerran 2010; Nesbitt and Johnson 2019). Moreover, older women’s experiences of services, policies and programs, and related impacts are currently lacking (Darab and Hartman 2013; Batterham et al. 2013; Petersen and Parsell 2015). As such, the author underscores the importance of engaging in research frameworks that are collaborative, inclusive, and participatory. Although research has been undertaken examining women’s experiences of chronic and long-term homelessness, and the ways in which this can be addressed in relation to service provision, this has not been extended to women’s first-time experiences of homelessness. Significantly, service provision for single, older women is problematic (Petersen and Parsell 2015; Woolrych et al. 2015; Petersen et al. 2014; Robinson and Searby 2006). As women “disappear” after the age of 45, in relation to homelessness, service provision and their experiences remain silent and unrecognized (McFerran 2010; Darab and Hartman 2013; Johnson et al. 2015). Yet, people over the age of 45 experiencing homelessness are 35.9% more likely to remain homeless than other groups such as family or youth (Johnson et al. 2015). Furthermore, women’s experiences of homelessness differ from men’s and, as such, need to be examined and responded to from a gendered perspective (Hartman and Darab 2017; Gonyea and Melekis 2018; Batterham et al. 2013; Zufferey 2017). Homelessness research needs to examine and analyze the way in which policies affect older single women as part of wider social, political, and economic structures (Petersen and Parsell 2015; Crane and Joly 2014; Darab and Hartman 2013; Tually et al. 2007). Particularly, as current homelessness policies and service provision tends to prioritize other groups such as young people, women with accompanying children leaving home due to family violence, and families, therefore marginalizing the needs of older, single women (Darab and Hartman 2013). This policy gap renders older, single women invisible, less “deserving” of support, leaving them to address

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their own homelessness by being mobile, moving from place to place, and encouraging “self-managed homelessness” (Robinson and Searby 2006; Zufferey 2017). Qualitative research which examines the way in which women’s lives are affected by policy, through their own voices and experiences, facilitates a critical approach to policy analysis. Often women’s lives are examined in silos, either as aged or women, but not together (Darab and Hartman 2013), and do not consider intersectional layers of oppression in the formation of identity including gendered, ageist, racialized, ethnicized, ableist and class analyses (Collins 2019). Thus, there is a need to engage in research which examines the ways in which policies intersect across multiple social issues in order to understand the ways in which unequal power relations are produced and how discriminatory practices contribute to ongoing homelessness (Zufferey 2017; Collins 2019).

2

Critical Feminist Research

Critical feminist approaches foster ethical and political choices and challenge positivist notions of objectivity and truth, as well as practices which may reinscribe and disempower women (Yuval-Davis 2012). They also enable relational approaches and re-position research participants from objects of research to co-constructors of knowledge, re-covering silenced experiences of those positioned on the “margins” (Strega 2005). Reflexive and relational approaches also allow for researchers and their practices to be scrutinized. Allowing an examination of the researcher’s cultural assumptions and biases which can take place in the act of knowledge production. Embedding research practices within reciprocal relationships with participants, facilitating an “authentic exchange of knowledge” (Jarldorn 2018, p. 36) and positioning them as “agents of change” (Collins 2019). Critical feminist research paradigms uncover and make those processes transparent. A critical feminist approach is particularly relevant for older, single women who experience homelessness for the first time in later life, as their stories are situated within political, social, and cultural contexts and are embedded in material and subjective conditions. The current neoliberal context privileges objectivist, evidence-based, scientific, and quantitative research agendas, with other forms of production of knowledge, including interpretivist and qualitative, positioned as inferior or less robust (Brown and Strega 2005). Critical feminist research challenges this position, opening up spaces of “resistance” and disrupting dominant social forces, in a way that uncovers “marginalized” voices and ways of knowing (Brown and Strega 2005). Enabling researchers to capture women’s lived experiences as sources of knowledge in a respectful manner, and in doing so, witness their acts of resistance making the “the research both about women and beneficial for them” (Liamputtong 2020, p. 10). Critical feminist research also acknowledges power relations, recognizing that women’s diverse personal stories can be “powerful educators” and valuable as “factual information” (Jarldorn 2018). This enables equal attention to “social and cultural context of events as well as the events themselves” (Jarldorn 2018, p. 36). With subjectivity and materiality intertwined, allowing human agency and lived

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experiences to be rethought, dominant ideologies are resisted. Counter-narratives to hegemonies can be explored through women’s stories of homelessness, allowing for new theoretical and methodological frameworks that gain access to the varied complex and socially contextualized experiences of women (Hodge 2017).

2.1

Intersectionality and Research

As an epistemology, intersectionality has enabled an examination of intersecting and subjective identities for women and is a framework that can challenge essentialized, colonial, and hegemonic overlays of understanding women’s diverse and complex experiences (Collins 2019). An intersectional lens enables considerations of intersecting oppressions, which are connected and socially constructed (Collins 2019). Further to this, intersectionality recognizes that “social problems” are embedded in power relations within historical and social contexts (Collins 2019). Therefore, spaces are opened up in which “social problems” can be examined as part of a matrix of domination; unequal social relations which intersect and shape subjectivities of women’s lived experiences of homelessness can be deconstructed (Collins 2019; Zufferey 2017). Traditional homelessness research design has treated inter-related social locations such as class, gender, race, ethnicity, sexuality, age, and ability as separate research and identity categories, not as mutually reinforcing (Zufferey 2017). Intersectionality challenges knowledge production, as it moves away from “siloed responses to social problems” (Jarldorn 2018) which can be ineffective in relation to research agendas. Without an intersectional approach, research agendas can reproduce oppressive power relations by offering an “essentialized” lived experience of what it is to be an older single woman experiencing homelessness, privileging the needs and experiences of one homogenous group (Hankivsky and Jordan-Zachery 2019). Indeed, an intersectional research framework acknowledges that women’s lives are diverse and complex, along the lines of race, ethnicity, age, class, sexuality, nationality, and ability (Collins 2019). As such, lived experiences are not reduced to single categories; they are multidimensional and complex and shaped by different factors operating together, located in “power dynamics and social locations and processes (eg: racism, classism, heterosexism, ableism, ageism, sexism)” (Hankivsky and Jordan-Zachery 2019, p. 7). Therefore, intersectional research in both design and analysis offers real possibilities to deconstruct essentialism, decenter dominant discourses, and maintain that knowledge is socially constructed and situated and moves subjugated voices which have been positioned in the margins to the center (Collins 2019; Hankvisky and Jordan-Zachery 2019; Mann and Huffman 2005). This is particularly important, as older single women experiencing homelessness have been identified as being more “vulnerable” to homelessness along the lines of class, race and/or ethnicity, gender, ability, and sexuality (Petersen 2015; Australian Association of Gerontology 2018; Tually et al. 2007; Petersen and Parsell 2014; McFerran 2010; Robinson and Searby 2006). Engaging in an intersectional research design and

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analysis with single older women’s experiences of homelessness can facilitate a richer and fuller understanding of the diversity of women’s experiences of homelessness.

3

Situating the Study

The study on which this chapter is based will interview 15 women, between 45 and 65 years of age, who have experienced homelessness for the first time. The data collection process, encompassing both the use of personal possession(s) within a sensory approach, photovoice, and photo elicitation, will involve a number of meetings. This process is congruent with the practice principles of photovoice which have been used by other studies (Wilkin and Liamputtong 2010; Hodgetts et al. 2011; Bukowski and Buetow 2011). However, it has been adapted to include the use of personal possession(s), incorporating two different data collection processes. Similar to processes used by photovoice, potential participants will be required to meet with the researcher beyond the first semi-structured interview, in order to further explore the parameters of the study and data collection processes.

3.1

First Meeting/First Semi-structured Interview

At the first meeting, the women, who volunteer to participate in the study, will engage in a 60–90 minute semi-structured interview, using sensory engagement with personal possession(s) that they have selected to bring to the interview. At the end of the first meeting/semi-structured interview, the women will be given the option of voluntarily proceeding with the next step of the data collection process, photovoice. If they agree, they will be provided with a disposable camera, which will be marked numerically, and a sheet of paper, held by the researcher that will correlate them with the pseudonym chosen by the participant. The women will be able to set the priorities and timeframes in which the pictures will be taken. The parameters of data collection in relation to producing photographs will be discussed with the women, as well as supporting them to use the camera, as well as address any questions that they may have. The researcher will discuss ethical considerations in securing permission from people that the women may choose to photograph (Bukowski and Buetow 2011), as part of the process. The women will have access to the researcher’s email address/phone number (a specific phone number to be used during the research process), in order to contact the researcher when they have completed taking their photos.

3.2

Second Meeting

The women will contact the researcher once they have taken their photos. The researcher will collect the cameras from the women and develop them, paying for

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the associated costs of having the photos developed. At the second meeting, a collaborative time will be made with the women for the second semi-structured interview to take place.

3.3

Third Meeting/Second Semi-structured Interview

The second face-to-face, semi-structured interview will occur with each of the women at a time of their choosing and at a location they identify as being most accessible. Each woman will be able to choose the photos they would like to include in the study, based on their significance. The women’s photos will be used to facilitate discussion during the semi-structured interview, through the process of photo elicitation, which is discussed in further detail below.

4

Indirect Questioning: Disrupting Narratives of Homelessness

Indirect questioning is an important consideration in the study’s research design in relation to data collection processes. Indirect questioning, by using prompts such as self-selected photos, and personal possession(s), moves away from an interview style that the women may have already been subjected to in relation to service provision. Assessments which are undertaken in service provision require the women having to tell their “story of homelessness” in a direct way, based on pre-scripted questions of the assessment form, which the worker is mandated to ask. Subsequently, there would be no capacity to focus on the women’s subjective experience of what it means to “be homeless.” In this way, people who experience homelessness build up an expected narrative or storytelling of what services and workers want to know as part of their requirements and do not engage in reflective responses which may give deep and varied meanings to their experiences of homelessness. Collier (2001) has posited that direct examination in the interview process may be “informative” but may not be necessarily useful for data analysis and collection. However, in contrast indirect questioning can address the possibility of vague responses from participants, elicit more detailed information from participants, and produce more data for analysis (Collier 2001). Further to this, the use of prompts such as photos and personal possession(s), linked with indirect questioning, during the data collection process, can engage the women to move away from scripted narratives of homelessness which they may have experienced as part of their engagement with services, moving them away from responses that they think that the researcher wants to know about. Instead it allows them to “show” and narrate their experiences as a collaborative exploration of their world view (Reavey 2011). The use of, and I would add, personal possession(s) with oral discussions will allow for more layered accounts which can create an alternative and expanded narrative. This moves the data collection process beyond asking about past experiences of homelessness,

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which would be the case in solely verbal accounts, and encourages the women to reflect on the social and material context of their experiences of homelessness (Reavey 2011). The purpose of the images that the women produce, and the possession(s) they bring to the semi-structured interviews, is for them to be used as mouthpieces for the women’s knowledge and the responses they trigger through indirect analysis (Collier 2001). They can be used to release memories, feelings, insight visual and thoughts, enabling experiential stories which are prompted by comments, and emotional connections, and are important sources of information (Collier 2001). The next section will examine the use of prompts in the data collection process.

5

Possessions and Sensory Approaches: The First Semistructured Interview

Each of the women will be asked to bring personal possession(s) of their choosing to the first face-to-face, semi-structured interview. Possessions are important for women experiencing homelessness, as they may have to divest themselves of their belongings as they leave their homes, forcing them to choose what is most important to them. This may result in women traveling with possessions in their car, as part of their “self mobility” (Robinson and Searby 2006), in bags or carrying possessions on their bodies. As a social worker, the author has been asked to “hold onto” possessions for people experiencing homelessness, as they had nowhere to store them safely. Or alternatively, they would acquire possessions during their homelessness experiences. The importance of these possessions is salient, as it has been identified that often, it is everyday objects that may have the most significance for people and allow for connection and meaning (Cox and Guillemin 2018; McCarthy 2020; Pable 2013). The importance of possessions to people experiencing homelessness, as a way of exploring their lived experiences, is new, and there is a need to further study of how they can be used in the research process (McCarthy 2020). This methodological approach has not been used extensively with marginalized groups, with limited studies examining the significance of possessions for women who have experienced homelessness (McCarthy 2020; Pable 2013) or homeless populations in general (Hodgetts et al. 2010). Yet, it has much to offer in contributing to processes of knowledge production for both participants and researchers during the data collection process, as it allows for inclusive, reflective and collaborative exploration of lived experiences of homelessness. By including the women’s possessions in the data collection process, one is able to demonstrate respect in acknowledging the importance of their possessions and the meaning they have ascribed to them, as well as allow for participatory processes. Material object(s), and by extension possessions, can have their own stories, but they can also be intertwined with the women’s lived experiences of homelessness and “become a site through which discussion about identity and everyday life can take place” (McCarthy 2020, p. 8).

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During the first semi-structured interview, possession(s) will be used, much like processes of photo elicitation, and discussed further in this chapter, as a prompt or communication tool. Used in this way, their purpose is to elicit memories, facilitate reflective and collaborative discussions, and create opportunities for new meanings and alternative conversations (Cox and Guillemin 2018). The use of the possession(s) in the first semi-structured interviews will be further deepened by facilitating a multisensory engagement of touch and sight (Cox and Guillemin 2018). While the use of sensory methodological approaches in research is in their infancy, it has been identified that they can facilitate discussions in relation to that which can be “unsayable” or articulated through words alone (Cox and Guillemin 2018). Akin to other visual methods such as photovoice, using sensory approaches can be useful with sensitive topics or experiences such as homelessness as it allows for reflection and explorations which are participant driven. The combined methodological approaches of the spoken word through semistructured interviews, sensory methods, and use of the women’s possession(s) will allow for a multi-layered engagement with the women’s stories. Facilitating a “multisensory nature of lived experience” extending visual methods into an engagement with the (other) senses (Mason and Davies 2009; Pink 2006). This layered approach allows for senses, such as sight, smell, and touch, to be interwoven with other forms of lived experiences and ways of knowing using creative methods to explore and allow for a reflective account of experiences (Mason and Davies 2009). Further to this sensory experiences are a part of people’s subjective and material situations and environments. This is particularly important for women experiencing homelessness, especially if they are “mobile” and moving from place to place. In this way sensory experiences can have “political, social and cultural contexts, and can be considered in relation to intersectional variables such as class, ethnicity and gender” (Mason and Davies 2009, p. 601). The author would also add other intersecting sites such as age, race, ability, and sexuality. Further to this, these two combined methodological approaches are also congruent with the principles of photovoice and intersectionality. Facilitating processes of reflection, in drawing attention to the meaning-making possibilities of everyday life experiences and possession(s), as they intersect with systems, oppression, and identities. Producing rich data, beyond the spoken word of an interview.

6

Visual Research

Not everything can be captured in the spoken word. Visual methods align themselves with intersectional critical feminist research approaches, as they enable a focus on the subjective experiences of women, including social processes which may be oppressive and not otherwise acknowledged in the research process. Further to this, visual methods can be used to promote public interest, galvanize social action and intervention (Pink 2006), and allow for representations of social issues such as homelessness, which is the focus of this study. The advantages of visual methods

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within this research design are their capacity to generate rich, textual, and sensory data with an exploration of “taken for granted” experiences (Rose 2007). In this way, visual methods can enhance traditionally used research techniques such as interviews, questionnaires, and focus groups (Warr et al. 2016) and create “multi sensory” approaches (Pink 2006). Visual methods are also deemed appropriate when conducting research with vulnerable populations who cannot speak of their experiences directly or who may be marginalized from research processes (Warr et al. 2016). This is particularly relevant for older single women, who have been marginalized in research processes, in adding their views to how they are affected by experiences of homelessness and what they need. The intended use of visual methods in this study, as well as the inclusion of their possession(s), is premised on ideas of participation and agency (Reavey 2011, p. 7). The women will be actively encouraged to make choices in relation to what pictures they choose to take and discuss in the interview process, as well as what personal possession(s) they bring. Thus, the women will participate in what is seen and how the images are used (Reavey 2011, p. 7). This approach emphasizes the women’s participation in the generation and organization of data and allows for a more collaborative and empowering process (Guest 2016; Jarldorn 2018).

6.1

Photovoice

Photos can allow for a subjective transparency of everyday life, providing information and reflection, in effect creating a visual representation of the “unspoken” (Rose 2007). Photos, particularly if they are produced by research participants, can facilitate an understanding of experiences, enable consciousness raising and value participants as experts in their own lives, and be seen as part of a social justice endeavor (Jarldorn 2018; Teti et al. 2019). The photographs produced by the women during the data collection process will facilitate a more participatory approach in terms of engaging with material and social contexts (Del Busso 2011). It is anticipated that by using the photo production method of photovoice, it will allow the women to communicate their lived experience through images as well as narrated interviews, producing “reflective, personal contextualized accounts of material and relational realms of space/place, objects and others” (Del Busso 2011, p. 47). This is particularly relevant for women who may be “self mobile” and may be couch surfing or sleeping in their cars. As well, it gives the women an opportunity to engage in knowledge production by interpreting their own images in relation to their experience within the context of the research interview (Del Busso 2011). Further to this, examination of the everyday lives of women experiencing homelessness, through research methods such as photovoice, is a powerful way to examine the impact of policies and programs, presenting a human face to research, contextualizing historical and social contexts, and the sharing of subjective experiences (Coemans et al. 2019). While photovoice has been used in exploring the needs of other “vulnerable” populations in Australia (Wilkin and Liamputtong 2010; Jarldorn 2018; Teti et al. 2019; Ussher et al. 2020), there has been no uptake in

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relation to using it in exploring the experiences of homelessness with women. This is despite its capacity to engage homelessness populations. In their research with homeless participants living on the streets of Auckland, Hodgetts et al. (2011) and Bukowski and Buetows (2011) found that the use of photovoice allowed for a re-framing of homelessness using the voices and experiences of participants. As they challenged social and political systems, re-constructed meanings of experiences of homelessness, and led to action to policies and programs. Further to this, photovoice facilitates exploration of people’s everyday lives, as well as promotes research participants as “advocates and agents for authentic change” (Bukowski and Buetows 2011, p. 740). Photovoice is also a collaborative methodological process between participants and researchers, as the data collection process fosters collaborative discussions that address research questions (Coemans et al. 2019) which is assisted by the numerous contacts as part of the data collection process. The inclusion of photovoice and photo elicitation as part of the research design in this study is based on a collaborative approach, premised on doing research with participants, rather than on them (Rose 2007; Jarldorn 2018; Teti et al. 2019). Giving control over to participants in being able to decide what photos to take, production of images, and which photos they want to include in their semi-structured interview. It is a collaborative process, as it asks the women to picture themselves and their worlds on their terms, providing autonomous self-expression that they are not usually afforded (Rose 2007) through other research design approaches.

6.2

Photo Elicitation: The Second Semi-structured Interview

The use of the women’s selected photos in the second semi-structured interview is consistent with the method of photo elicitation, which combines the spoken word of the interview and the photos. Photo elicitation is seen as a supportive function of the research data collection and analysis process (Rose 2007). Photos are used to encourage “interview talk that would not be possible without the photo, and the photos and the talk are then interpreted by the researcher” (Rose 2007, p. 239). Further to this, the spoken interview and the women’s own selected photographs will allow for detailed information about how participants see their world and reflect on things they may not usually think about (Rose 2007). As mouthpieces, they can achieve further in-depth questioning, encourage discussion and facilitate reflection (Rose 2007; Chonody and Welsh 2014; Liamputtong 2020). Photo elicitation, with people who have experienced homelessness, has been found to be a more engaging process for both participants and researchers, allowing for more in-depth information about people’s experiences than the traditional one-off semi-structured interview, facilitating exploratory and intensified storytelling than interview questions alone (Bukowski and Buetow 2011; Hodgetts et al. 2011). Offering new information beyond what the participant may think the researcher wants to know is possible in a spoken narrative interview, yielding deeper insights (Padgett et al. 2013). Further to this, photo elicitation interviews complement spoken interviews when participants have experienced traumatic life experiences which may

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be difficult to verbalize, which may include homelessness and other experiences. They are able to exert control of the images they want to share and move away from pre-determined content and meaning (Padgett et al. 2013). This is an important consideration given that some of the women participating in the study, as has already been identified in this chapter, might have experienced or be experiencing shame and trauma due to homelessness. Photo elicitation as a prompt for storytelling during the semi-structured interview with the women can be empowering and enable creativity, engaging in a process of “show and tell” (Padgett et al. 2013, p. 1143). Previous homelessness research which has used photo elicitation has also found that it allowed for reflection on service provision and social processes, which might not be ordinarily addressed in an interview. Hodgetts et al. (2011) and Bukowski and Buetow (2011), in their respective research of homeless “street life” for women and men, found that there was an examination of everyday processes such as friendships, as well as access and barriers to services. They were provided with subjective accounts of the impacts of policies for people experiencing homelessness such as being banned from public spaces including libraries and access to food. They found that these insights and new knowledges, which were facilitated through the reflective process of photo elicitation, led to changes in policies, and improved service provider’s understandings of the lives of people outside of their interactions through service provision (Hodgetts et al. 2011). This is particularly useful for women experiencing homelessness, as their voices have not been captured in homelessness research as explored in this chapter, and can do much to address gaps in policies and service provision encouraging political change.

7

Ethical Considerations

Visual methods can present distinct ethical dilemmas for participants, researchers, and the research process (Wiles et al. 2008; Warr et al. 2016). However, this is more so when respondents are producing their own photos, as they are co-constructors of the story, which raises considerations in relation to “controlling and interpreting” the narrative. As a narrative account, photos can facilitate a reflective subjective expression of political, social, and cultural stories for participants. Researchers therefore need to consider the way in which visual data is interpreted, disseminated and the need for a reflexive approach (Guest 2016). Central to this are the ways in which researchers can honor the intent of working collaboratively with women on what can be extremely sensitive issues such as homelessness, and other related experiences which may be disclosed during the data collection process. Engaging in reflexive research practice is a way in which researchers can ensure that they do not impose their own feminist narrative over the women they are collaborating with (Guest 2016, p. 82). This is particularly salient in working with women who have been or may be experiencing homelessness at the time of the data collection and the way in which they interpret those experiences. Having an intersectional understanding of power differentials, and embracing an auto/biographical and reflexive feminist approach, is important (Guest 2016; Rose

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2007) and as researchers understanding that there may be multiple ways in which women can experience and interpret homelessness. Representation is another key ethical consideration for all research participants. However, this is more so for older, single women experiencing homelessness, given that shame and stigma have been identified as key barriers for women’s underrepresentation in engaging with service support and research. Drawing on Bourdieu’s work, Warr et al. (2016) highlight the importance of “symbolic violence,” which occurs when research participants are “misunderstood or mis-represented.” Within the scope of this study, this can happen in a number of ways, including the way in which “social problems” such as homelessness are conceptualized within the wider community, particularly the fetishization that might take place through mainstream discourses and images of people who live with or have experienced homelessness. There are a plethora of images which conjure images of rough sleepers and the stereotype of the “bag lady” (Gonyea and Melekis 2018) which permeate mainstream ideas of what it means to be homeless. There is a need to counter these visual representations, engaging in representations in which rich, full narratives which move beyond one-dimensional representations of women experiencing homelessness as pathologies (Zufferey 2017). This issue must be considered in relation to what has been identified as “dignity in process and dignity in outcome” (Warr et al. 2016, p. 12). This must include considerations such as how the women want to be portrayed, how audiences may receive and interpret data and researchers offering faithful portrayals both in images and words that are not derisive (Warr et al. 2016; Rose 2007). Symbolic or optical violence (Rose 2007) can combine with “reality effects” (Warr et al. 2016, p. 12) of research, in which conditions are reproduced by researchers. This is important as the women experiencing homelessness in this study may be vulnerable to being stereotyped or stigmatized through images, words, and ideas which may in effect “confirm” rather than challenge the assumptions and prejudices within audience groups (Warr et al. 2016; Horsell 2006). Processes of collaboration with the women have to extend beyond the site and moment of producing an image to the sites of its content and audiencing as well (Rose 2007). As a way of addressing this ethical tension, and mirroring reciprocity and respect, participants will be able to read their interview transcripts and offer feedback, before analysis and publication; the researcher will also provide feedback to the participants once the research has ended (Liamputtong 2020; Hodge 2017). Confidentiality in relation to visual methods such as photovoice can bring about ethical dilemmas. Photos can create detailed and intimate portraits of individuals (Warr et al. 2016) and by extension other individuals who may be captured through the photovoice process (Bukowski and Buetow 2011; Wilkin and Liamputtong 2010; Teti et al. 2019). The author would also add activities which may be incriminating or be seen as “illegal.” Responses which can address issues of confidentiality and ethical dilemmas in relation to these issues can include pixelating or blurring faces in order to de-identify participants and others (Warr et al. 2016), as well as recognizable places and activities which may cause harm and compromise safety. However, this might not be possible as it may diminish the richness of the data (Warr

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et al. 2016) or may go against the women’s intent in telling “their story.” In effect, it counteracts the visual presence and voices of socially and politically marginalized participants (Warr et al. 2016) and the stories they want to tell. The researcher runs the risk of creating a narrative which may not be what the participants want to convey and is counterproductive to the empowerment, inclusive, and collaborative principles of photovoice and critical feminist research. As a way of addressing this ethical issue, the women will be offered different levels of consent for their photographs, ranging from images being discussed in the interview but not reproduced to being reproduced in full (Guest 2016). The question of harm in social research is one that is particularly salient, which can result in discomfort, distress, regret, embarrassment, shame, and other negative emotions or “trigger traumatic memories” (Warr et al. 2016). These risks are further exacerbated for social groups that are marginalized, mis-represented, or stereotyped (Warr et al. 2016). This is particularly salient for women living with or having experienced homelessness, particularly as they may be experiencing shame as has been identified through the literature and highlighted in this chapter. This may also result in stigma that the women may feel associated with the public’s perception of homelessness not as a social justice issue or structural issue but in line with neoliberal ideologies which frames it as a personal failing and individual issue (Zufferey 2017; Horsell 2006). The issue of harm could also be impacted by the study’s research design which has proposed multiple contacts as part of the data collection processes, resulting in the women speaking about highly sensitive issues for extended periods of time. There needs to be an awareness of how these processes may impact on the women and have responses which address this risk, such as referring them for support beyond the research process (Padgett et al. 2013). Feminist researchers argue that refusal of help is harmful to vulnerable participants, and researchers must offer participants assistance (Liamputtong 2020). Differing power positions by researchers and participants requires ongoing reflexive examination of intersectional analysis, with socially disempowered and marginalized participants (Rose 2007). This study will need to engage in reflexive processes which constantly examine ongoing ethical tensions in relation to research design, data collection, and analysis, particularly in relation to autonomy, interpretation, and dissemination in working with the women and their experiences of homelessness.

8

Conclusion and Future Directions

This chapter has discussed the way in which a new and innovative theoretical and methodological framework could gain access to the varied complex and socially contextualized experiences of older women’s first-time experiences of homelessness. Multisensory methodological processes, it has been argued, can give voice to experiences which cannot always be spoken in words alone due to the shame and stigma older single women experience when facing homelessness for the first time in later life.

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The multilayers of domination, which women experience through processes of homelessness, can be examined through an intersectional analysis, moving away from an essentialized gendered consideration to a more subjective and multifaceted understanding of how women are differentially impacted. The chapter has also examined some of the ethical tensions in relation to audiencing, representation, when working with respondent-produced photographs and the need to maintain a reflexive stance, examining processes of collaboration, empowerment, and control for both the researcher and the participants. This is especially important in relation to the way in which experiences of homelessness may be pictured and authored within wider social discourses and the need to not reproduce dominant pathological representations but also allowing the women to tell “their stories.” Research methods which do not rely simply on the direct examination of experiences through words alone in the interview process but instead draw on the senses including touch have been explored in this chapter as a way of offering up methods for doing inclusive research. Facilitating reflection in the everyday life is of most significance to those who have previously been overlooked in the research process, such as older, single women experiencing homelessness. The research methodology outlined in this chapter has much to offer future studies which strive toward conducting more inclusive research approaches with ‘vulnerable’ population groups. Indeed, including participants in the process of data collection and analysis facilitates empowerment through collaborative and reflexive research methods. The spoken word is not the only way in which we can gain insight into experiences of vulnerable populations. Methodological approaches such as photo voice and sensory objects can assist researchers in gaining deeper understandings of that which may not be easily spoken about.

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Pable, J. (2013). Possessions in the homeless shelter experience: The built environment’s potential role in self restoration. Interiors, 4(3), 267 293. Padgett, D. K., Smith, B. T., Derejko, K. S., Henwood, B. F., & Tiderington, E. (2013). A picture is worth. . .? Photo elicitation interviewing with formerly homeless adults. Qualitative Health Research, 23(11), 1435 1444. Petersen, M. (2015). Addressing older women’s homelessness: Service and housing models. Australian Journal of Social Issues, 50(4), 419 438. Petersen, M., & Parsell, C. (2015). Homeless for the first time in later life: An Australian study. Housing Studies, 30(3), 368 391. Petersen, M., Parsell, C., Phillips, R., & White, G. (2014). Preventing first time homelessness amongst older Australians. AHURI Final Report, 222. Pink, S. (2006). The future of visual anthropology: Engaging the senses. New York: Routledge. Reavey, P. (2011). The return to experience: Psychology and the visual. In P. Reavey (Ed.), Visual methods in psychology: Using and interpreting images in qualitative research (pp. 1 14). New York: Routledge. Robinson, C., & Searby, R. E. (2006). Accommodation in crisis: Forgotten women in Western Sydney. Shopfront Monograph Series, 1, 1 36. Rose, G. (2007). Visual methodologies : An introduction to the interpretation of visual materials (2nd ed.). Los Angeles: Sage. Sharam, A. (2010). A predictable crisis: Older, single women as the new face of homelessness. Parity, 23(10), 21. Sharam, A. (2011). Homeless women no home at the end of the road. Parity, 24(9), 41. Sharam, A. (2017). The voices of midlife women facing housing insecurity in Victoria, Australia. Social Policy and Society, 16(1), 49 63. South, S. H. (2019). Australian Association of Gerontology Position Paper: Older women who are experiencing, or at risk of, homelessness. Australasian Journal on Ageing, 38(1), 66 68. Strega, S. (2005). The view from the post structuralist margins: Epistemology and methodology reconsidered. In L. Brown & S. Strega (Eds.), Research as resistance: Critical, indigenous, and anti oppressive approaches (pp. 199 236). Toronto: Canadian Scholars’ Press. Teti, M., Majee, W., Cheak Zamora, N., & Mauer Batjer, A. (2019). Understanding health through a different lens: Photovoice. In P. Liamputtong (Ed.), Handbook of research methods in health social sciences (pp. 1147 1166). Singapore: Springer. Tually, S., Beer, A., & Faulkner, D. (2007). Too big to ignore. Future Issues for Australian Women’s Housing 2006, 2025. Ussher, J., Hawkey, A. J., Perz, J., Liamputtong, P., Sekar, J., Marjadi, B., Sekar, J., Schmied, V., Dune, T., & Brook, E. (2020). Crossing boundaries and fetishization: Experiences of sexual violence for trans women of color. Journal of Interpersonal Violence. https://doi.org/10.1177/ 088620520949149. Warr, D., Waycott, J., Guillemin, M., & Cox, S. (2016). Ethical issues in visual research and the value of stories from the field. In D. Warr, M. Guillemin, S. Cox, & J. Waycott (Eds.), Ethics and visual research methods; theory, methodology and practice (pp. 1 16). New York: Springer. Wiles, R., Prosser, J., Bagnoli, A., Clark, A., Davies, K., Holland, S., & Renold, E. (2008). Visual ethics: Ethical issues in visual research. Southhampton: ESRC National Centre for Research Methods. Wilkin, A., & Liamputtong, P. (2010). The photovoice method: Researching the experiences of Aboriginal health workers through photographs. Australian Journal of Primary Health, 16(3), 231 239. Woolrych, R., Gibson, N., Sixsmith, J., & Sixsmith, A. (2015). “No home, no place”: Addressing the complexity of homelessness in old age through community dialogue. Journal of Housing for the Elderly, 29(3), 233 258. https://doi.org/10.1080/02763893.2015.1055024. Yuval Davis, N. (2012). Dialogical epistemology An intersectional resistance to the “oppression olympics”. Gender & Society, 26(1), 46 54. Zufferey, C. (2017). Homelessness and social work: An intersectional approach. New York: Routledge.

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Pranee Liamputtong, Kyja Noack-Lundberg, Tinashe Dune, Jane M. Ussher, Alex Hawkey, Brahmaputra Marjadi, Janette Perz, Virginia Schmied, Jessica Sekar, and Eloise Brook

Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Intersectionality: Theoretical Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Research Design of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Feminist Action Research: Methodological Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Research Designs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Ethical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e mail: [email protected] K. Noack Lundberg · J. M. Ussher · A. Hawkey · J. Perz · J. Sekar Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia e mail: [email protected]; [email protected]; [email protected]; [email protected]; [email protected] T. Dune School of Health Sciences, Translational Health Research Institute, Diabetes, Obesity and Metabolism Translational Research Unit, Western Sydney University, Penrith, NSW, Australia e mail: [email protected] B. Marjadi School of Medicine, Western Sydney University, Campbelltown, NSW, Australia e mail: [email protected] V. Schmied School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia e mail: [email protected] E. Brook The Gender Centre Inc, Sydney, NSW, Australia © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_69

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Abstract

This chapter discusses the research process that was employed in understanding the lived experiences of sexual violence among trans women of color in Australia, and the outcomes that had been planned and achieved. Transgender (trans) refers to individuals whose gender presentation differs from their sex assigned at birth. The term transgender includes a range of identities such as trans woman, trans man, nonbinary, or gender diverse. Gender incongruence, where one may experience a discrepancy between their gender identity and their gender assigned at birth, often result in gender expression and behavior that do not conform to the traditional gender binary. Within the lesbian, gay, bisexual, transgender, and queer community (LGBTQ), trans individuals are most stigmatized and yet least understood. Existing research regarding trans persons tends to focus on White, middle-class trans women. Limited research has focused on sexual violence among trans women. Importantly, little is known about the lived experiences of being a trans women of color in Australia and their experience of sexual violence. This research filled the gap in the health and social science literature. This chapter will generate great interest from health and social care researchers who aim to embark on research concerning sensitive issues and vulnerable and marginalized individuals in the future. The chapter discusses an innovative means that can promote social inclusion in research among trans women of color. This project provides a valuable example of inclusive research with a group of marginalized individuals. The authors also hope that our project and its findings will lead to better health and well-being of trans women of color living in Australia and elsewhere. Keywords

Trans women of color · Lived experience · Sexual violence · Research process · Photovoice method · Mixed method research

1

Introduction

This chapter discusses research procedures that were developed for undertaking research on the experiences of sexual violence among trans women of color living in Australia. Transgender (trans) refers to individuals whose gender presentation differs from their sex assigned at birth. The term transgender includes a range of identities such as trans woman, trans man, nonbinary, or gender diverse (Levitt and Ippolito 2014; White Hughto et al. 2015; Jones et al. 2015; McCann and Sharek 2016; Reisner et al. 2016; Schilt and Lagos 2017; Winter et al. 2016; Nolan et al. 2019). Gender incongruence, where individuals may experience a discrepancy between their gender identity and their gender assigned at birth, often result in gender expression and behavior that do not conform to the traditional gender binary (Girshick 2008; Miller and Grollman 2015). The World Professional Association for Transgender Health suggests that transgender should be viewed as a culturally diverse human phenomenon rather than disorder (Coleman et al. 2012). However, as a result of transgressing traditional

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binary gender systems, as well as the lack of appropriate information to understand transgender experience, trans populations are often considered abnormal or are outsiders placed in, and living at, the margins of society (Winter et al. 2016; Wylie et al. 2016). Consequently, trans people are likely to encounter a range of negative lived experiences and health indicators, causing high prevalence of adverse health outcomes, such as stigma and various forms of social oppressions and discrimination, including sexual violence (Moolchaem et al. 2015; Fernandez-Rouco et al. 2017; Reisner et al. 2016; Stotzer 2009; White Hughto et al. 2015; Ussher et al. 2020a, b). Not surprisingly, the health and well-being of trans people, including trans women, is affected by these factors, leading to considerable difficulties and complexities in their lives (Moolchaem et al. 2015). A metasynthesis of the literature pertaining to the lived experiences of trans individuals was conducted and it was found that many people had experienced physical problems related to transgender identity, psychological distress, discrimination, and social exclusion (Moolchaem et al. 2015). Trans individuals experience various forms of violence, including sexual abuse, physical and verbal harassment, forced sex, theft, physical assault, and they are at an increased risk of being murdered (de Lind van Wijngaarden et al. 2012; Khan et al. 2009; Sausa et al. 2007). Additionally, the meta-analysis demonstrated that many trans individuals experience psychological distress related to stigma, shame, anxiety, depression, sexual violence, and low self-esteem, occasionally leading to suicidal ideation (see also Dispenza et al. 2012; Khan et al. 2009; Lui and Wilkinson 2017; Melendez and Pinto 2007; McCann and Sharek 2016; Miller and Grollman 2015; Nemoto et al. 2006; Owen-Smith et al. 2016; Reisner et al. 2016; White Hughto et al. 2015; Ussher et al. 2020a, b). Significantly, Sausa et al. (2007) suggest that trans individuals of color and who live in a different culture from their birth are more likely to encounter multiple layers of stigma, discrimination, and sexual violence. Within the lesbian, gay, bisexual, transgender, and queer community (LGBTQ), trans individuals are the most stigmatized group, and yet the least understood (Meyer 2003; Lui and Wilkinson 2017). Existing research regarding trans people tends to focus on White, middle-class trans women (de Vries 2015). There is limited research that focuses on sexual violence among trans women (see Fernandez-Rouco et al. 2017; Duke and Davidson 2009; Grant et al. 2011; Lombardi et al. 2001). Importantly, little is known about the lived experiences of being a trans women of color in Australia and trans women’s experience of sexual violence. This research addressed the gap in the literature. Specifically, the research aimed to: 1. 2. 3. 4.

Explore the lived experience of being a trans person among trans women of color Examine the discourses of sexual violence among trans women of color Investigate the experiences of sexual violence among trans women of color Identify strategies that trans women of color employ to cope with sexual violence in their everyday life and mechanisms that can promote their health and well-being 5. Use the voices of this marginalized group to inform culturally sensitive prevention and responses to sexual violence experienced by trans women in Australia 6. Develop resources for policymakers and health providers for working effectively with trans women of color

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In this chapter, the authors discuss the research processes that we employed in understanding the lived experiences of sexual violence among trans women of color and the outcomes that we had planned and achieved (see Ussher et al. 2020a).

2

Intersectionality: Theoretical Framework

In this research, we situated our approach within intersectionality theory which recognizes the multiple intersections in a woman’s life (Crenshaw 1989, 1991; Nixon and Humphreys 2010; de Vries 2012; Vaughan et al. 2015). Intersectionality theory considers the multiple dimensions within which individuals exist, including gender, age, developmental stage, socioeconomic status, ethnicity, minority group status, and migration experience. Thus, an intersectional lens goes beyond the traditional boundaries of gender, race, and social class (Collin 2000) to include other social categories such as migration status, sexual orientation, educational attainment, language, and many other categories that influence the individual’s life situation. As Anthias (2013, p. 4) posits, intersectionality embraces a range of positions. Essentially, it is “a heuristic device for understanding boundaries and hierarchies of social life.” Using an intersectionality lens, researchers have expanded to account for other social positions including the connection of gender, race, social class with age, religion, disability, nationality, sexuality, and domestic violence (Collin 2000; Nagel 2003; Sokoloff and Dupont 2005; Ludvig 2006; Yuval-Davis 2006; Ghafournia 2014). For trans women of color, other social realities also form a central part of their identities. Using the single axes of either gender or ethnicity will not present a complete picture of the individuals’ lived experiences and cannot fully answer questions about their existence and experiences. Therefore, this research examined the intersection of gender, race, social class, age, religion with sexuality, migration, and sexual violence in the construction and lived experiences of sexual violence among trans women, who come from culturally and linguistically diverse communities (CALD) (trans women of color). This research offered a new perspective on intersectionality that can be valuable for health and social care in Australia and elsewhere.

3

The Research Design of the Study

This project used a sequential mixed methods design to address the study aims. This involved both qualitative and quantitative methods within a study sequence illustrated in Fig. 1.

3.1

Feminist Action Research: Methodological Framework

This study utilized feminist methodology to explore trans women of color’s experiences of sexual violence. This methodological framework assists in engaging with

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• Knowledge translation exhibition hibition and resources

Stage 2: Lived Experiences • Stage 1a: Narrative literature review • Stage 1b: Advisory committee and stakeholder engagement

• Stage age 2a: Individual inin depth interviews • Stage 2b: Photovoice pictures and interviews • Stage 2c: Online forum analysis

Stage 1: Discovery

Stage 4: Dissemination • Quantitative survey with a women from across Australia, comparing ring across a ro gender and sexual al identities

Stage 3: Survey & Cohort Comparison

Fig. 1 Sequential mixed methods research design

women’s actual voices and lived experiences to develop greater understanding of sexual violence at the nexus of culture and sexuality (Liamputtong 2007, 2020; Hesse-Biber 2014, 2017). Within the umbrella of feminist methodology, this research best fits within feminist action research. This research achieved the aims of action research by engaging with and centering the perspectives of trans women as they chose to present them. Further, this methodology is highlighted in the fact that privileging trans women’s experiences and voice resulted in the dissemination of research findings in academic spaces, but also audiovisual exhibition pieces to ensure findings were shared with community in a meaningful and accessible way. Aspects of participatory research and feminist research cohere ontologically and epistemologically as both seek to shift the center from which knowledge is generated (Reid 2004). Further, they both work toward social justice and democratization. As noted by Reid (2004, p. 4) “by combining feminist research’s critique of androcentricism with participatory research’s emphasis on participation and social change, feminist action research provides a powerful approach to knowledge creation for social and personal transformation.” Feminist action research as a conceptual and methodological framework enables a critical understanding of women’s multiple perspectives and works toward inclusion, participation, action, and social change while confronting the underlying assumptions the researcher brings into the research process (Reid 2004). Feminist action researchers facilitate building knowledge to change the conditions of women’s lives, both individually and collectively, while reconstructing conceptions of power so that power can be used in a responsible manner (Reid 2004). Based on the participatory action research model, key stakeholders from policy, practice, research, and community collaborated in the development of the project around the key research questions, engagement with collecting and analyzing women’s experiences, and disseminating the project findings across a range of platforms (Higginbottom and Liamputtong 2015). This approach also ensured that stakeholder perspectives, voices, and experiences were understood and presented in meaningful and impactful ways that facilitated translational policy, research, and practice outcomes.

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Research Designs

To effectively explore the multidimensionality of trans women of color’s voices and lived experiences of sexual violence, the study was conducted in four stages. In line with the sequential mixed methods design, each of the stages are interconnected and support the development and execution of the following stage. The stages were: Stage 1: Discovery Stage 1a: Narrative literature review Stage 1b: Advisory committee and stakeholder engagement Stage 2: Lived experiences Stage 2a: Individual in-depth interviews Stage 2b: Photovoice pictures and interviews Stage 2c: Online forum analysis Stage 3: Survey and cohort comparison Stage 4: Knowledge translation exhibition and resources

3.2.1 Stage 1: Discovery Stage 1a: Literature Review A literature review was conducted of peer-reviewed and grey literature in Australia and internationally on experiences of sexual violence of trans women of color, compared to other LGBTQI+ and cisgender heterosexual women. The findings helped to contextualize the experiences and perceptions of sexual violence among trans people globally. Notably, the literature review indicated that many of the poor health outcomes faced disproportionately by trans people are closely associated with their experiences of sexual victimization and these inequities are intensified for trans people of color. This review of the literature and emergent recommendations provided us with a better sense of the main gaps to address and explore with trans women of color in Australia. Stage 1b: Advisory Committee and Stakeholder Engagement Drawing on the feminist action research model, an advisory group consisting of policy experts, researchers, service providers, and other community group members with expertise in sexual violence and/or trans health and well-being was established at the start of the project. The engagement of national stakeholders is an essential component in research involving marginalized and vulnerable research participants (Liamputtong 2007, 2010). This approach also ensures that stakeholder perspectives, voices, and experiences are understood and engaged with in meaningful and impactful ways that allow for translation to policy, research, and practice outcomes that address the specific needs of the community of focus (Higginbottom and Liamputtong 2015). The advisory group was engaged, via email and videoconference every 4–6 months across the project timeline, to assist and provide feedback at each stage of the project.

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3.2.2 Stage 2: Lived Experiences In this stage, a qualitative approach was adopted. Qualitative inquiry refers to “a broad approach” that qualitative researchers adopt as a means to examine social circumstances (Creswell and Poth 2018; Liamputtong 2020). Qualitative inquiry is based on an assumption that people utilize “what they see, hear, and feel” to make sense of social experiences (Rossman and Rallis 2017, p. 5). Qualitative inquiry permits researchers to ask questions, and to find answers, that can be difficult or impossible using quantitative approaches (Hesse-Biber 2017). Qualitative research is essential in research involving marginalized, vulnerable, or hard-to-reach individuals and communities (Liamputtong 2007, 2010, 2020; Taylor et al. 2016; Flick 2018). This is particularly so when they are “too small to become visible” in quantitative research (Flick 2018, p. 452). More importantly, due to their marginalized, vulnerable status and distrust in research, most of these individuals tend to decline to participate in research. The nature of qualitative inquiry will permit qualitative researchers to be able to engage with these individuals. The following strategies were used to tap into the lived experiences and phenomenological perspectives of trans women of color. Stage 2a: Engagement with Trans Women 1. Individual In-Depth Interviews Interviewing is the preferred method of research for investigating subjective experience within CALD communities, facilitating involvement of individuals who may not be comfortable with completing written surveys, or may not have high levels of literacy (Liamputtong 2007; Ussher et al. 2017). In-depth interviewing is a technique used to understand participants’ “perspectives on their lives, experiences, or situations as expressed in their own words” (Taylor et al. 2016). This method is essential in learning about the life of the research participants in great depth (Brinkmann and Kvale 2015; Morris 2015; Serry and Liamputtong 2022). Through conversation, researchers will learn about the “hidden perceptions” of their research participants (Marvasti 2004). In-depth interviews were undertaken by a researcher who is a trans woman of color, with trans women of color from a range of culturally and linguistically diverse backgrounds living in Melbourne, Brisbane, and Sydney. Interviews were done face-to-face at the location that suited the participants or via videoconferencing for those who were unable to meet face-to-face. There is some research literature that considers interactional differences between semi-structured qualitative interviews conducted by telephone or face-to-face (Irvine et al. 2013; Sturges and Hanrahan 2004). Similar to past research (Sturges and Hanrahan 2004), there was no discernible difference in the content of interviews undertaken either by videoconference or face-to-face. The interviews were conducted in English, digitally recorded, and most took between 60 and 120 min. But there were some interviews that lasted three to four hours as participants had a lot of things to discuss. Participants were provided with a participant information sheet and signed a consent form before the interview.

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To help reduce the power dynamic between participants and the researcher, the interviewer asked participants to elect an appropriate venue to carry out the interview. Prior to the interviews, the interviewer would talk to participants on the phone, usually two or three times, to organize a time and date, check they were still available for the interview the day before it occurred, and reschedule if a participant could not make the original time or date. This gave the interviewer the opportunity to chat and get to know women prior to the interview and facilitated a greater level of comfort and trust leading into the actual interview. The interviewer disclosed that she was a trans woman of color, and was open when asked personal questions. Aligned with the research aims, the interview participants were asked about their life as a trans woman of color, with a focus on experiences of transitioning, their definition and experiences of sexual violence, strategies used to respond to sexual violence, experiences of support, and what health and social care providers and policymakers need to do to address sexual violence experienced by trans women. While we had a semi-structured interview schedule to guide the discussion, the interviews were conversational in nature, and often did not follow the set order of questions. 2. Photovoice Participants were invited to chronicle important aspects of their lives that highlight their understanding, experiences, perspectives, and personal safety strategies used to try to minimize their risk of sexual violence. This was done using participants’ own smartphones or other electronic gadgets such as an iPad. As part of the photovoice method, participants were asked to capture pictures to help stakeholders visualize elements of an individual’s life that were pertinent to a particular phenomenon (Liamputtong 2010; Teti et al. 2019). Situated within the PAR feminist methodology, the method of photovoice has emerged as an innovative means of working with marginalized people and in cross-cultural research. The photovoice method rejects traditional paradigms of power and the production of knowledge within the research relationship (McIntyre 2008; Teti et al. 2019). The researchers were concerned about developing critical consciousness and empowerment among their research participants, allowing the participants to lead the direction of conversation depending on the images they had taken. The photovoice method, thus, tends to be used in collaborative and participatory research (see Wang 1999; Lopez et al. 2005a, b; McIntyre 2008; Wang and Pies 2008; Teti et al. 2019). Methodologically, photovoice requires the participants to take photographs which represent their understanding and meanings of life. The photographs are then used as the basis for discussions in later interviews, which often occur in group settings or individual interviews. The discussion of the photographs permits the participants to articulate their understanding and interpretations of their images they have taken (Teti et al. 2019). In this study, interview participants from Stage 2a were invited to take at least two photos to chronicle important aspects of their lives that highlight their experience of being a trans woman of color, their experiences of sexual violence, and their strategies to stay safe with regards to sexual violence. They were then invited to a second follow-up interview to discuss their series of

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photographs. Written and visual information was provided to aid in the photovoice process, assuring participants there was no “right” or “wrong” photo and that the focus was more on the meaning of the image, rather than photography skill. The discussion of the photographs permitted the participants to articulate the understanding and interpretations of their images they had taken (Teti et al. 2019). To protect anonymity, participants were asked not to take pictures that would reveal their own and/or someone else’s identity. However, they were given the option of taking identifable photographs if they wanted to do so, and the opportunity for photos to be pixellated to disguise their identity. All women provided permission for their photographs to be used in publications, being sent a copy of the images we chose and the accompanying text for approval. Additional permission was sought for the exhibition of the photographs. Trans women of color and trans community stakeholders were involved in the decision-making process for selection of exhibition images and accounts, and had control over way they appeared in the exhibition (see below). 3. Research Participants, Sample Size, and Recruitment of Stage 2a Purposive sampling techniques were adopted to select participants for the interivew and photovoice stages of the study. Purposive sampling refers to the deliberate selection of specific individuals, events, or settings because of crucial and specific information that they can provide relevant to a particular experience or phenomenon that cannot be obtained so well through other channels (Creswell and Poth 2018; Liamputtong 2020). Purposive sampling focused on trans women of color from a range of CALD backgrounds with the aim of seeking their perspectives on the lived experience of being a trans woman, their understanding of sexual violence, and for some their lived experience of sexual violence. In research involving marginalized individuals, recruitment must be done sensitively (Liamputtong 2007; Manohar et al. 2019). In this research, participants were recruited from a range of contexts that were found to be successful in our previous research, including organizations focusing on LGBTQI+ communities such as Twenty10 and The Gender Centre; organizations focusing on CALD populations such as the Community Migrant Resource Centre (CMRC); and through social media. The social media advertisements asked for participation from those who were a “trans woman of color” or “trans woman from a non-English speaking background” to take part in interviews about sexual violence. Snowball sampling was also used to recruit participants. Snowball sampling involves asking study participants to pass on the study information to someone who they know who would fit the sampling criteria (Bryman 2016; Hesse-Biber 2017). This technique is employed extensively in research with groups whose members are difficult to locate or unlikely to be willing to take part without referral from others in their own network, such as trans women (Liamputtong 2007, 2010). Using these techniques, 31 trans women of color completed the first interview, and 19 completed both the initial and photovoice interviews, between September 2018 and September 2019. The mean age of participants was 29 years old, with the

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range of time since migration for migrant women being 4 months to 44 years. It was anticipated that data saturation would occur around 20 or 25 participants. With 31 participants, saturation was achieved in this part of the project (Morse 2015; Bryman 2016; Hennink et al. 2017; Liamputtong 2020). Women who took part in the photovoice contributed on average seven photographs each (range 1–15 photographs) (see Hawkey et al. 2020; Ussher et al. 2020b, 2021). To recognize the participants’ time, they were provided with a gift voucher of AUD$50 for each interview. Such compensation is essential when working with marginalized groups to acknowledge their effort and contribution to social knowledge (Liamputtong 2007, 2010). Thus far, we have written three papers from the in-depth interviewing and photovoice methods, and all three papers have been published (see Ussher et al. 2020b, 2021). Stage 2b: Online Forum Discourse Analysis: Australia Wide To contextualize how gender identity and sexual violence is understood, experienced, and managed by transgender people in the broader sphere, we collected qualitative data from preexisiting and publically accessible Internet forums where transgender and nonbinary people discuss gender transitioning and sexual violence. Online forums have been decribed as an “unobtrusive method” (Lee 2019) which produces more “naturalistic” data, as the researcher does not affect the outcome in the same way they might in interviews or participant observation. Due to anonymity, participants are likely to be less restrained in discussing sensitive or taboo topics. Equally, as the division between the virtual, or online, and face-to-face communication breaks down, identity formation and negotiation of sexual violence is influenced by and takes place online in addition to offline spaces. This can be particularly the case for marginalized groups who may not be able to express and develop their identities in public or at home. Cavalcante (2016) argues that recent media and technology developments have facilitated movements toward more mediated gender transition. He characterizes online forums as “care structures” or “architectures of organised care and concern” (Cavalcante 2016) where connections are formed and a sense of belonging is created. Potential forums were searched in Google in 2018 using the terms “transgender forums,” “trans forums,” and “transsexual forums,” to identify active, public, up-todate online transgender forums. To respect trans communities who were uncomfortable with their forums being researched, all forums which explicitly stated “no researchers allowed” were excluded. In the remaining eligible forums, we only viewed publicly available posts and did not subscribe as forum members. All relevant forums were screened for their relevance to the study’s research questions and inclusion of trans women of color. Four forums were selected for analysis: three forums (“subreddits”) from Reddit: r/asktransgender, r/transsupport, and r/transgenderau and one forum from TransPulse. Only discussions which were relevant to the study’s research questions were selected for analysis. Since the people who posted their stories to such forums may not have intended for them to be read by an

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outsider to the forum, de-identifying procedures (e.g., use of numbers rather than tag names; presenting aggregate data in themes rather than cases) were used to ensure anonymity and respect the privacy of contributors (Liamputtong 2007, 2020). Two papers have been published from this phase of the project (see Liamputtong et al. 2020; Noack-Lundberg et al. 2020).

3.2.3 Stage 3: Survey and Cohort Comparison To understand the experiences of trans women of color in relation to other women’s experiences of sexual violence in Australia, an online survey was developed to be administered nationwide. Within the survey, the project set out to compare the experiences of trans women from CALD backgrounds (target number 100) with (a) non-CALD transgender women (target 100); (b) cisgender heterosexual women (target 500); and (c) cisgender lesbian, bisexual, and queer women (LBQ) (target 500). The survey, which focused on women’s experiences of sexual harassment and assault, was developed by the research team, informed by the findings from Stages 1 and 2. The survey was reviewed by the advisory committee and staff at ANROWS (the funder of this research project) who made suggestions for changes to ensure relevance, accessibility, and readability across diverse cohorts of women in Australia. Prior to its launch, the revised survey was uploaded to Qualtrics and piloted with 20 women, purposively sampled across the above comparison groups. After piloting and revision, the survey was launched digitally across all major social media platforms as well as through LGBTQI+ organizations and groups across Australia from August–October 2019. The final survey of 26 questions used a combination of closed and open items. There were no forced completion or complusory items, and respodnents could exit the survey at any time by closing the survey window. To ensure that diverse women were directly targeted in recruitment, the survey was launched with three different versions of the introductory text and images specific to: 1) trans women (CALD and non-CALD); 2) lesbian, bisexual, and queer women; and 3) cisgender heterosexual women. As with the interviews, survey respondents were recruited from a range of contexts, including organizations associated with the investigators and advisory group; LGBTQI+ communities, Twenty10 and The Gender Centre; organizations focusing on CALD populations such as the Community Migrant Resource Centre (CMRC); and through social media and snowball sampling (respondents passing details of the study on to others). No incentives were offered for participation. 3.2.4 Stage 4: Knowledge Translation Exhibition and Resources To support LGBTQI+ networks, health workers, tertiary health and social science professionals and researchers, and the wider Australian community, the data from this study was disseminated across three formats. First, the project findings were developed into resources for policy and practice. These resources include a summary powerpoint presentation of the findings, practice guidelines, and policy recommendations that can also be used to inform the delivery of workshops and training on trans women’s safety, and practice to policy

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recommendations (see https://www.anrows.org.au/publication/crossing-the-linelived-experience-of-sexual-violence-among-trans-women-of-colour-from-cultur ally-and-linguistically-diverse-cald-backgrounds-in-australia/). Second, an exhibition of trans women of color’s lived experiences from the findings of the study was created, in collaboration with trans women on the stakeholder group, a curator, an illustrator, and a web designer (see https://www. crossingtheline.online/). This was a crucial component of the photovoice method. The exhibition showcased the voices and experiences of the CALD trans women who chose to participate in the photovoice portion of the project. It also summarized the quantitative comparative findings to highlight the need for acknowledgment of and engagement with trans women’s perspectives on sexual violence. The exhibition was therefore an innovative and intersectional means to share the knowledge collected through the project with a range of LGBTQI+, mainstream, practice, policy, and government stakeholders. This sharing activity also helped to enhance the profile of sexual violence as experienced by trans women of color and those from CALD backgrounds, as well as empower and recognize the importance of the information and lives shared by the participants. The exhibition findings were translated into a printed book as a gift for participants, and for distribution to stakeholders. Post-exhibition stakeholder workshops had been planned to present the findings of the research and engage in experiential and developmental training on how to support CALD trans women who are at risk or may experience sexual violence. However, due to the 2020 crisis of COVID-19, this happened as a webinar (see https://kapara.rdbk.com.au/landers/6c6217.html).

3.3

Ethical Issues

In research concerning vulnerable people, such as trans women, the safety of the research participants must be considered seriously. Ethical conduct is therefore an essential part of research (Creswell and Poth 2018; Hesse-Biber 2017; Israel 2015) and ethical guidelines were strictly observed prior to, during, and after the project completion. This project was approved by the Western Sydney University Human Research Ethics Committee (H12530) and the Twenty10 ethics committee. The participants were provided with information that clearly explained involvement, their rights in the research, and the project funding. They were also informed that they could withdraw from the project at any time if they decided to do so and that their withdrawal would not have any repercussions on their current and/or future relationships with the researchers and supporting organizations. Participants were invited to provide consent before taking part in the project, which could be rescinded at anytime during the project. Participants who were interested in taking part in the photovoice aspect of the study and having their photograph presented at the exhibition were informed that they could withdraw their photograph at any time without prejudice. Those who decided to have their photograph exhibited were informed of

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the potential risks of doing so and were given ample time to decide whether they wanted to provide a photo and/or have it displayed. The participants were also briefed about how to protect themselves during the research process, particularly when taking photographs for the photovoice project. All participants were ensured that their identity would be protected in all research reports and publications, unless they explicitly gave permission for an identifable image to be used. Only their signed consent form contained their real name, and these forms were kept securely during the research process, separate from the data, and will be disposed of 7 years after the completion of the project. Where participants became distressed during the research process, the interviews were paused and the participant given the option to discontinue or resume at a later time, if they felt ready to do so. All participants completed the interviews with no such incident. All participants were provided with information for mental health services in the participant information sheet and in the interviews. However, most of the women already had links to mental health providers as part of their regular modes of self-care. Support was also provided for the interviewer, who engaged with the interviewees over a number of occasions, and listened to many accounts of sexual violence that were emotional and potentially distressing to hear. This included regular debriefs with the chief investigator on the project who is a trained psychologist, and funding to access external psychological support if needed.

4

Conclusion and Future Directions

To the knowledge of the authors, this research was the first project that examined the lived experience of being a trans person and sexual violence among trans women of color in Australia. This project contributed in-depth knowledge about the discourses and lived experience of sexual violence among trans people, which had not been examined previously. It also adopted inclusive research approaches that other researchers can adopt in their future research. The knowledge gained from this project can be used to develop resources to prevent sexual violence among these individuals and for health and social care providers to implement sensitive and culturally appropriate health and society for trans women from CALD backgrounds. The authors argue that the research will benefit several groups. Transgender people, particularly trans women, are likely to experience stigmatization, marginalization, and social isolation which can have a considerable impact on their quality of life and well-being. By participating in this proposed research, their voices and needs could be heard within the health and social care system and in the wider society. The findings of this study can lead to the prevention of sexual violence among these individuals and in communities. The project has established a cluster of researchers in the area of transgender which will support early career researchers (ECRs) and research students at Western Sydney University and within Australia. This project will benefit trans women of color, trans communities, and health/ social service providers in Australia as it has addressed underresearched aspects of transgender lives and their experiences of sexual violence. It will benefit Australian

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society as it promotes the development of knowledge as well as inclusive research strategies that can help to reduce sexual violence among vulnerable groups of Australian people. This research will help to address specific conceptual, policy, and programming challenges that result in very high social, cultural, and economic costs. The project has offered valuable insight into the lived experiences and needs of trans women of color within an international context where migration patterns are rapidly changing the interdisciplinary scope and importance of sexual health and rights. Findings from this study are important for the development of culturally and sensitively sexual violence prevention policy and programs that can cater for the needs of trans women. Individuals will only seek care if the care provided meets their needs. The findings of this study can be used to promote a better understanding of the public about the lives of these individuals, which may lead to the eradication of stigma and discrimination toward them in Australian society. The project has led to several collaborative arrangements. Through dissemination and training processes, the project will establish a close collaboration between research institutes and stakeholders (health and social care organizations and policymakers) which ultimately would lead to the establishment of health and social care services. These findings can be used to create culturally and sensitive health and social care for a vulnerable group of individuals in Australia. An important part of the research was to establish an advisory committee to oversee the project. The authors made strong links with members of not only the transgender communities, but also other LGBTQ groups. This has created further collaborations between research institutes and LGBTQ communities. Through this project, the authors have created connections with transgender communities residing in other parts of Australia and overseas and this will lead to further research grant applications at the national and international levels. The authors hope that this chapter will generate great interest from health and social care researchers who aim to embark on research concerning sensitive issues and vulnerable and marginalized individuals in the future. The authors have discussed an innovative means that can promote social inclusion in research among trans women of color. This project provides a valuable example of inclusive research with a group of marginalized individuals. The authors also hope that our project and its findings will lead to better health and well-being of trans women of color living in Australia and elsewhere.

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Picturing Disaster: Participatory Photovoice Research with a Flood-Affected Indigenous Community

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Contents 1 2 3 4

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Principles of Participatory and Community Based Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Ochapowace Nation Oral History and Flooding Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Modifying Photovoice for Environment/Disaster Research with an Indigenous Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Photovoice as Participatory Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Four Methodological Modifications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Outcomes and Outputs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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Abstract

Photovoice is a visual qualitative research method designed to convey participants’ experiences and perspectives through photography. Intended for participatory projects, the method is guided by goals of empowerment, social change, policy change, or other community aims. In this chapter, we outline the key characteristics of photovoice method in the context of participatory, communitybased research. In 2019, we conducted our own modified photovoice study in collaboration with an Indigenous community in the province of Saskatchewan, Canada. The First Nation – which has a strong connection to the land and water but also a history of severe flooding and flood evacuation – aimed to document their environmental history and collective flood experience. The two-phase study A. J. Fletcher (*) Sociology and Social Studies and Community Engagement and Research Centre (CERC), University of Regina, Regina, SK, Canada e mail: Amber.fl[email protected] N. Antonini Sociology and Social Studies, University of Regina, Regina, SK, Canada e mail: [email protected] © Springer Nature Switzerland AG 2022 P. Liamputtong (ed.), Handbook of Social Inclusion, https://doi.org/10.1007/978 3 030 89594 5_70

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followed a participatory model co-led by researchers and community representatives. In this chapter, we present our study methodology, focusing particularly on how we adapted photovoice method to be suitable for an Indigenous community with a history of flood-related losses and to be inclusive of individuals with flood experience. Key adaptations included alignment with the principles of OCAP (ownership, control, access, and possession); a critical realist philosophical framing; use of pre-existing photographs rather than induced photography; and collective rather than individual provision of photos. Our project demonstrates the importance of methodological flexibility and adaptation while still maintaining the overarching values of inclusive, participatory research. Keywords

Inclusion · Participatory · Photovoice · Indigenous · OCAP · Flooding · Disaster · Method adaptation

1

Introduction

Community-based participatory research (CBPR) is guided by a well-defined set of overarching values and goals, including community-driven topics, rigorous research methods, and meaningful mobilization of results (Castleden et al. 2012; Liebenberg 2018). Photovoice and other visual methods tend to align well with these values by prioritizing participant involvement and agency in a research project (Castleden et al. 2008; Teti et al. 2012, 2019). Although existing literature contains useful guidance on how to conduct participatory projects, this form of research is particularly complex and iterative, often requiring unplanned changes and decision-making in real time. This complexity can be attributed to the participating community developing new interests or identifying new goals for the project, project longevity issues such as participant attrition and scheduling conflicts, or even just project practicality based on the wishes of the participating community. As researchers, we should ask ourselves if we are presenting multiple dimensions of the research process as options or, rather, pushing for what we think ought to be done. These are just a few examples of what the authors experienced in developing this project. We learned that researchers engaging in participatory approaches should be prepared for methodological adaptation. This chapter discusses the process of designing and conducting a participatory research project in partnership with an Indigenous community. The researchers examine their own application of participatory research principles throughout the project, focusing in particular on adaptation of existing methods to fit the needs of the project and the partner community. In this way, the chapter responds to Aldridge’s (2019, p. 1928) call for transparency on the “nature, extent, and limitations of participant involvement.” The modification of photovoice described here exemplifies the need for flexible participatory methods and demonstrates the

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importance of spontaneous methodological adaptation. We find that participatory research in practice may not always align perfectly with participatory research in theory.

2

Principles of Participatory and Community-Based Research

Community-based and participatory research approaches emerged as an alternative to the historically dominant positivist paradigm, in which participants were often treated as “objects” to be studied but had little control over the conditions of their participation (Aldridge 2019). In contrast, community-based research is guided by principles of “fairness, justice, empowerment, participation, and self-determination” (McCloskey et al. 2011, p. 4). Building on a framework from the International Association for Public Participation, McCloskey et al. (2011) identified a spectrum of community involvement in research, moving from basic outreach and consultation to more fulsome collaboration and shared leadership. Similarly, Aldridge (2019) presented a participatory model in which the participant’s role ranges from passive “object” to subject, actor, and, finally, leader of the project. Participatory approaches exemplify these most highly engaged forms of research. A key goal of participatory research is prioritizing and centralizing participants’ voices – whether voice is construed literally, though storytelling or narrative methods, or in terms of political agency or other empowerment (Aldridge 2019). Photovoice is a prime example of a participatory method, positioning the participant as a key informant or expert on visual matter rather than as an “object of interrogation” (Pauwels 2015, p. 98). By empowering the participant to not only document and speak to their own lived experience and reality, but also to facilitate social change for themselves and their community, photovoice encapsulates the general principles of CBPR very well. A key tenet of participatory research is that community members/participants should be collaborators or partners in the project (Aldridge 2019). This approach recognizes the knowledge and skills that both community members and researchers bring to the table and the potential for mutual learning (Castleden et al. 2012). Ideally, the project will be initiated by community representatives on a topic of importance to them, but, in actual practice, projects are initiated in a variety of ways (Castleden et al. 2012). Participants may also guide the methodological design, co-design interview guides or other tools, help interpret the findings, and determine appropriate knowledge mobilization methods. To be fully inclusive, participatory research should ensure that partners/participants are equipped to select the most appropriate research approaches “to meaningfully unpack the complexity of social concerns” (Liebenberg 2018, p. 2). This form of research is attentive to structural inequalities and power relations and may help challenge social inequities (Castleden et al. 2012).

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Although community members are involved in various stages of a participatory project, the precise nature and extent of participation from community members vary. Even within highly collaborative projects, community members may choose to be involved in some activities and not others – for example, participants’ time may be more effectively spent on project oversight, while researchers manage detailed and time-intensive activities like data coding (Fletcher et al. 2015; Smith et al. 2010; Westhues et al. 2008). It is important to recognize and respect participants’ preferred levels of interest and involvement (Castleden et al. 2012), rather than prescriptively requiring a certain form of participation. Collaborative approaches are particularly important for working with marginalized communities, such as Indigenous communities who experience ongoing forms of structural racism and colonization (Manuel and Derrickson 2017; The First Nations Information Governance Centre (FNIGC) 2014). In Canada, Indigenous people have good reason to be wary of partnerships with non-Indigenous researchers. Past examples of highly unethical research can be found throughout Canada’s colonial history, including exploitive nutritional experiments conducted on starving and ill children in residential schools in the 1940s and 1950s (Mosby 2013). Appropriative research projects, including “parachute” researchers who enter and leave the community on their own terms, are all too common (Castleden et al. 2008, 2012; Tuhiwai Smith 2012). Participatory research with Indigenous communities must be guided by values of respect and reciprocity. Such projects recognize that “research is not an innocent or distant academic exercise but an activity that has something at stake and that occurs in a set of political and social conditions” (Tuhiwai Smith 2012, pp. 35–36) and must, therefore, consider the structural relations in which the project is situated – such as histories of colonization (FNIGC 2014). Castellano (2014) noted the importance of Indigenous research for authentically representing Indigenous people, their worldviews, and understandings. Trust-building is particularly important as the foundation for any partnership between community members and external researchers (Wang and Redwood-Jones 2001). In Canada, research with Indigenous communities is guided by the fundamentals of OCAP. Standing for ownership, control, access, and possession (i.e., OCAP), these principles aim to keep knowledge production in the hands of Indigenous peoples and populations. The First Nations Information Governance Centre (FNIGC) organized these four principles to educate researchers on the unethical history of research with Indigenous people around the world and to have researchers take responsibility as stewards of the knowledge production process, rather than asserting ownership or creative title over the knowledge. Indeed, these principles highlight the researcher’s responsibility in defending and protecting knowledge produced and reproduced through the research process with and for Indigenous communities. Previous research has identified strong alignment between photovoice method and the values of Indigenous research, including an emphasis on narrative and visual knowledge (Maclean and Woodward 2013). However, photovoice does not explicitly integrate the decolonial aspects of OCAP that guide the general protocol for CBPR with Indigenous communities. Photovoice as originally outlined by Wang, for

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example, does not specify a “feedback loop” (Castleden et al. 2008, p. 1401), in which the researchers regularly request and encourage feedback from the participating community. Engaging the OCAP principles became one of several modifications to photovoice in this project. This particular modification was prompted by the contextual significance of working with a partner First Nation specifically, as expanded later in this chapter.

3

The Ochapowace Nation Oral History and Flooding Project

In 2017, the authors (non-Indigenous, university-based researchers) were connected with an Indigenous community (Ochapowace Nation) by a mutual colleague after receiving funding to study the social dimensions of climate hazards in rural and Indigenous communities across the prairie province of Saskatchewan. Ochapowace wished to conduct research on their community’s environmental history and experience of flooding. One of the Nation’s main goals was to document and preserve the knowledge of their Elders with particular focus on the history of the land and water. Ochapowace First Nation is a sovereign Indigenous nation whose values and traditional knowledge are passed from generation to generation through the wisdom of Elders. The Nation’s history includes a strong respect for the land and water. Over the past century, Ochapowace has also experienced repeated attempts by colonial governments to appropriate its land and natural resources (Carter 1999; George 2009; Indian Claims Commission 2006). Representatives of the Nation expressed an interest in documenting historical knowledge through video interviews with Elders. In line with the researchers’ interest in climate hazards, the community also wished to record their past flood experiences, which could help inform preparation for future extreme events. The research relationship was different from the commonly considered “ideal” in which the community seeks out the researcher (Castleden et al. 2012); however, we arrived at a project that suited our mutual interests. In a series of three preliminary meetings – which included representatives of the Nation (e.g., the Chief and members of Council), researchers in the university’s Department of Sociology, and representatives of the university’s Research Office – the details of a two-phase project were collectively sketched and manifested in a research agreement between the Nation and the university. Although a variety of possible methods were discussed, ranging from water sampling to participatory geographic information systems (PGIS), it was determined that a combination of videography, open-ended interviewing, and photovoice was most suited to our mutual goals and respective skillsets. After receiving approval from the Nation’s council of Elders and the institutional ethics board, the project proceeded. Activities were carried out by the researchers (including a professor, a postdoctoral fellow, and an undergraduate honors student) and three administrative staff members at Ochapowace. High-level leadership was provided by a Headman on the Ochapowace Council, who regularly connected with community members and especially the Elders. The researchers’ role was focused on methodology, data collection, and analysis, while Ochapowace members connected with participants,

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coordinated interviews, and advised on the direction of the project and desired outputs. Therefore, not all team members were involved in all project activities; rather, tasks were divided according to our respective abilities. We prioritized the inclusion of diverse participants, not just the most active or outspoken individuals in the community (McCloskey et al. 2011). This required significant in-kind contributions from the Ochapowace staff, who visited community members in their homes to discuss the project and obtain consent and even drove some Elders to the community center for interviews. Most community members participated in only one component, but a few members participated in multiple activities. All were compensated with an honorarium, gift or lunch, and/or tobacco as determined by cultural protocol. Phase 1 of the project was an oral history component to help preserve the Elders’ knowledge of the Nation, the land, and the water. With the help of two student research assistants from Ochapowace and a graduate student filmmaker, video interviews were conducted during a group roundtable. The roundtable discussion opened with a prayer from an Elder and a drum song. In addition, nine Elders participated in individual video interviews to tell their stories in depth. The video recordings were edited into a series of discrete stories as well as a short documentary film to be shared with youth in the Nation’s school. Phase 2 focused on flooding. For this component, individual interviews were conducted with 26 community members – including Elders, community leaders, and 4 youth from the local high school – all of whom had been affected by extreme flood events in 2011 and/or 2014. Some older participants were also able to recall floods in earlier decades. The final activity was a photovoice discussion attended by eight members of the community (six men and two women), some of whom were in leadership positions during a past flood and others who had been affected personally. The approach resembled two categories in Aldridge’s (2019) typology of participatory research: “Participant as Actor” and “Participant-Led.” The values of the “Participant-Led” type are manifested in the joint leadership model and prioritization of participant voice over researcher analysis (discussed further below). However, similar to the “Participant as Actor” approach, the community members and participants did not participate in all research activities; for example, participants did not code the data or engage in writing up results. We also modified the original research methods to better suit the team’s collective goals. The following sections discuss this project’s use of the photovoice method and modifications made to suit the project.

4

Modifying Photovoice for Environment/Disaster Research with an Indigenous Community

4.1

Photovoice as Participatory Method

Photovoice method originated with the work of Caroline C. Wang in which rural Chinese women participated in a photovoice project on the social status of women and women’s reproductive health (Wang and Burris 1997). It was developed as a process in which participants record and reflect on their community history,

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strengths, and concerns; establish and facilitate “critical knowledge and dialogue” (Wang and Burris 1997, p. 370); and ultimately mobilize knowledge to affect change through public policy and other social and health institutions. This particular method is informed by three primary theoretical insights: (1) Freire’s notion that visual imagery best empowers people to both capture and theme their own biographies and histories; (2) feminist theory which has women, children, or otherwise marginalized people documenting their own stories and experience in a way that can be easily mobilized and understood by all; and (3) elevating the voices of the participants by having them steer the social change they need (Wang and Burris 1997). In general, photovoice allows for participants to share their stories and voices in a creative and accessible way. Photovoice projects are guided by various and often overlapping goals, including knowledge production or methodological development, education, empowerment, and advancing the practical or political goals of a community or group (Fantini 2017). Liebenberg (2018) identified three main photovoice activities: (1) making photographs; (2) collective interpretation of the photographs’ meaning; and (3) dissemination of the key themes and issues as a catalyst for change. The process of photovoice is built on collective discussion of participants’ concerns for the purpose of reflecting, recording, and taking action (Fantini 2017). Often (but not always), the goal is to communicate community members’ issues or concerns to external parties, like policymakers (Fantini 2017). However, Pauwels (2015, p. 108) noted the tendency toward overly “idealistic and celebratory” accounts of visual methods in the current literature. It is problematic to assume that such methods automatically give “voice” or that empowerment always follows directly from such methods (Sutton-Brown 2014). Pauwels emphasized the importance of identifying a clear purpose to a visual project, whether scientific or social action oriented – or both. Sutton-Brown (2014) emphasized research strategies that prioritize participants’ control over the process. Further, the method’s contextuality means it is not always perfectly replicable or transferrable to other projects – such as research with and for Indigenous communities – and modification may be necessary. Some existing research has modified photovoice method to suit the self-identified goals and needs of the participating community (Castleden et al. 2008; Maclean and Woodward 2013). While methods may require modifications, so too can other elements of the research project. In Teti et al.’s (2012) photovoice project to document and illustrate women’s experiences living with HIV/AIDS, the research team found that, due to issues of disclosure and privacy of non-participants who might be photographed, significant consideration and planning were required during the informed consent portion of the project. The photovoice component of the Ochapowace project was guided by multipurpose goals established through multiple meetings with the community. These goals were (1) to identify community concerns such as external support, compensation, or any other group-identified themes pertaining to the floods; (2) to provide a platform and vehicle for documenting community history; (3) to examine the potential alignment between photovoice and decolonizing research; and (4) to enhance methodological rigor by expanding the dataset for the project as a whole, thus facilitating triangulation. Within this goal set, the team was able to stay true to the theoretical underpinnings outlined by Wang and Burris (1997) and yet able to

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create a unique research approach that both represented the researchers’ critical realist epistemological and ontological assumptions and Ochapowace’s own goals for the project. As a participatory method, photovoice typically centers on a communityidentified topic or concern to address the needs of the participating community. The community contacts identified the theme of flood-related loss as particularly important and central to the community’s flood experience. The following section discusses an adaptation of photovoice method and reflects on the researchers’ duty to the OCAP principles and to the knowledge shared by Ochapowace Nation. The discussion demonstrates how methodological flexibility may sometimes be necessary to meet the overarching values of participatory research.

4.2

Four Methodological Modifications

4.2.1 OCAP as Guiding Principles OCAP is not a standard template applicable to every First Nation; rather, the interpretation and application of ownership, control, access, and possession vary in meaning across Indigenous communities. Other contextual nuances include the researcher’s specific context: their institution, their territory, and the participating community, for example. Fortunately, the time-intensive process typical of photovoice projects and decolonizing research should provide sufficient opportunity to consider the principles in context. When it comes to research with or for Indigenous people, the research will always be political (FNIGC 2014). Our project was guided by a question posed by Castleden (2008) about how to properly balance power in a research project. As a set of guiding principles, OCAP addresses this issue well and offers a decolonial specificity to the goals of CBPR and to photovoice method as well. A key component of OCAP, for example, is ownership of the knowledge stemming from a project. The researchers acknowleged that the information and knowledge shared with them is not theirs in any respect of ownership; rather, the researchers are stewards of this content and are responsible for its well-being on behalf of the institution. Such understandings were laid out in the research agreement governing the project. Access expands on ownership by respecting that communities have the right to total access and the autonomy to make decisions on external access to their data and information. Ownership, control, and access are all linked to possession of information and research data – after all, it is difficult for communities to exercise control and ownership without actual possession of the data, meaning they must have complete sovereignty over their knowledge, information, data, and history (FNIGC 2014). The project outputs were designed to ensure community ownership and possession in an accessible way. For example, the first output was a colorful narrative report that included quotations from the Elders and a set of archiv