Research Handbook on Disability Policy 1800373643, 9781800373648

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RESEARCH HANDBOOK ON DISABILITY POLICY

ELGAR HANDBOOKS IN SOCIAL POLICY AND WELFARE This exciting series provides a comprehensive overview of cutting edge research on Social Policy and Welfare, forming a definitive guide to the subject. The Handbooks present original contributions by leading authors, selected by an editor internationally recognised as a preeminent authority within the field. Titles in the series are truly international in their scope and coverage, and use a comparative approach to analyse key research themes. Equally useful as reference tools or high-level introductions to specific topics, methods and debates, these Handbooks will be a vital resource for academic researchers and postgraduate students. For a full list of Edward Elgar published titles, including the titles in this series, visit our website at www.e-elgar.com. ​ ​ ​

Research Handbook on Disability Policy Edited by

Sally Robinson College of Nursing and Health Sciences, Flinders University, Australia

Karen R. Fisher Social Policy Research Centre, UNSW Sydney, Australia

ELGAR HANDBOOKS IN SOCIAL POLICY AND WELFARE

Cheltenham, UK • Northampton, MA, USA

© The Editors and Contributors Severally 2023

Cover image: Detail shot of Unearth by Jackie Saunders., photo by P. Soteriou. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical or photocopying, recording, or otherwise without the prior permission of the publisher. Published by Edward Elgar Publishing Limited The Lypiatts 15 Lansdown Road Cheltenham Glos GL50 2JA UK Edward Elgar Publishing, Inc. William Pratt House 9 Dewey Court Northampton Massachusetts 01060 USA A catalogue record for this book is available from the British Library Library of Congress Control Number: 2023935286 This book is available electronically in the Sociology, Social Policy and Education subject collection http://dx.doi.org/10.4337/9781800373655

ISBN 978 1 80037 364 8 (cased) ISBN 978 1 80037 365 5 (eBook)

EEP BoX

Contents

xi xxxiv

List of contributors Acknowledgements Introduction to disability policy through a human rights lens Karen R. Fisher and Sally Robinson PART I

1

HUMAN RIGHTS Sophie Mitra and Sally Robinson

1

Narrative 1: Mia’s piece – Candice, “Defying Gravity” and I Mia Boonen

2

Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak

17

3

A journey together – co-creation and experiential knowledge of people with intellectual disabilities in social policy María Gómez-Carrillo de Castro

33

4

Accessibility policies in Brazil: negotiating collective access through the principles of Disability Justice for a Brazilian Center for Disability Studies Marivete Gesser and Anahí Guedes de Mello

5

Narrative 2: Evil: disabled villains in media Em Dewhurst

6

Developing a participatory indicators-based framework for monitoring disability rights Paula Campos Pinto and Maria Engrácia Cardim

7

Disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand: maximising the potential of civil society in the implementation of Article 33.3 Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka

8

Narrative 3: If my childhood can have CRPD’s company Honglu Zhu

9

The right of people with disabilities to participate in cultural life: is Cinderella going to the ball? Delia Ferri and Ann Leahy v

15

49 65

67

85 100

102

vi  Research handbook on disability policy

10

When the state does not care: disability rights in a context of multi-layered crises, instability and disablism Grace Khawam and Supriya Akerkar

11

Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi Sarah I. Huque

118

135

12

From enabling access to enabling rights: Singapore’s practical approach to disability policy Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong

13

An accessible public transit system as a right for people with disabilities in Taiwan Kuo-yu (Lisa) Wang and Pey-chun Pan

14

Narrative 4: The effect of disability policy on lives Chien-Ju Chou

15

The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms Gabriel Amitsis and Fotini Marini

186

16

The influence of disability models in Indonesian past and present: disability rights law-making and policy-making Abi Marutama, Antoni Tsaputra and Lengga Pradipta

202

17

The Accessible Canada Act: a political expression of disability rights as human rights Michael J. Prince

217

18

Narrative 5: Locked-in, locked-down: lived experience of a non-speaker Tim Chan

19

From international standard to national practice: the role of national disability institutions in making the Convention on the Rights of Persons with Disabilities a reality in South and Central America Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and Renato Antonio Constantino Caycho

20

Narrative 6: Affection and emancipation: the friendship of four disabled women Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira

21

Decolonizing disability rights policies through indigenous theorization: the case of Zimbabwe Martin Musengi

151

166 183

233

234

251

256

Contents  vii

PART II

WELFARE Karen R. Fisher and Olivia Geehan

22

Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz Peter Raisbeck

23

From care and welfare to independent living? Interpreting and assessing the human right to live independently and be included in the community Yvette Maker

24

Sexuality and relationships: informing rights-based policy and practice through research with and by people with intellectual disability in Australia and Aotearoa New Zealand Patsie Frawley and Brigit Mirfin-Veitch

272

274

289

25

Narrative 8: A quiet genocide: the power of segregation Cindy Liu

303

26

Engaged advocacy: a framework for inclusion of people from refugee and asylum-seeking backgrounds in disability policy Maree Higgins, Mahmoud Murad, Kim Robinson, Angela Dew, Katherine Boydell, Fiona McKay, Joanne Watson, Mariano Coello, Louisa Smith, Kelley Johnson and Ruth Wells

27

Narrative 9: My work advocating for the Syrian community Mahmoud Murad, assisted by Miream Salameh and Maree Higgins, translated by Miream Salameh

28

The Australian National Disability Insurance Scheme and disability identity: how welfare policy impacts narratives of disability Tessa-May Zirnsak

29

Tracing the welfare–rights connection in American disability policymaking  David Pettinicchio

30

Questioning the dominant welfare discourse on personalization and autonomy embodied in personal budget policy Toon Benoot and Rudi Roose

361

31

Negotiating rights in education: an examination of U.S. education disability policy Catherine Kramarczuk Voulgarides

374

32

Narrative 10: My education story Alexander Elliott

33

Preventing catastrophe: the welfare state and disaster risk for people with disabilities Zachary A. Morris

305

322

330 346

387

389

viii  Research handbook on disability policy

34

Strategic human rights-based policy reforms for making Australian universities equally accessible to students, staff, and faculty who are Indigenous people with disability Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein

402

35

Narrative 11: The “lucky” one Ayah Wehbe

418

36

Exploring equality and non-discrimination of disabled students in policy and practice in public universities in Uganda Paul Emong and Anica Zeyen

421

37

Participation in personalization of minority cultural groups: lived experience and diversity in the UK Martin Partridge, Mahuya Kanjilal and Elaine Arnull

437

38

Materializing change: exploring human rights-based approaches to improve built environment accessibility at the neighbourhood scale Mary Ann Jackson, Erin Wilson and Flavia Marcello

452

39

Narrative 12: The draining expectations placed upon marginalised groups Mac Zamani

40

Alternative community living practices in Taiwan: rethinking de-institutionalization and the human rights model  Heng-hao Chang and Yi-Chun Chou

470

41

Mainstreaming disability in Indonesian development: rethinking disability citizenship to move beyond a welfare focus Antoni Tsaputra and Eban Pollard

485

42

Housing deficit for people with disabilities in a radically neoliberal country: Chile’s case Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan-Riffo

43

Inclusion of students with visual impairment in Indian higher education: a critical inquiry from a human rights perspective Aneesh Peter and Catherine Elisa John

469

501

517

PART III HEALTH Sally Robinson 44

Narrative 13: Voice, choice and a better outcome Raelene West

45

Making disability known: medicalisation of disability and the development of the International Classification of Functioning Jennifer Smith-Merry

536

539

Contents  ix

46

Disabilities, evidence-making and quality of life: the three core human rights principles framework Luciano Bottini Filho

551

47

Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces Eleanor Brown and Jo Ferrie

565

48

Narrative 14: Technology in the lives of people with disabilities Brooke Ellison

581

49

Disability and human rights: the right to benefit from scientific progress Anne M. Bryden, Jennifer French and Brian Gran

583

50

Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies Kara B. Ayers and Monica C. Schneider

51

Care robots as enabling assistive technology: implications for quality of life and disability policy  Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda and Diarmuid O’Shea

52

Narrative 15: Disability rights and robotics: being there without being there Sophie Savage and Tillie Curran

53

‘It’s about quality of life rather than length of life’: using and refusing policy discourse in the lives of children labelled with life-limiting and/ or life-threatening conditions Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard and Sally Whitney

636

54

Inclusive sexuality education: achieving sexual justice, sexual pleasure and sexual agency for women with disability Denise Beckwith and Nicole Laurance

653

55

Narrative 16: In her lifetime Lee Tsourvakas

56

Pain management for palliative care patients with disabilities: revisiting morphine prescription policies in developing contexts Julieth Musengi and Martin Musengi

600

615

632

667

669

PART IV ECONOMIC INCLUSION Karen R. Fisher and Bella Bauer 57

Narrative 17: Supported or stuck? Disability employment policy for young people Sionainn Jans

684

x  Research handbook on disability policy

58

Economics of inclusion Daniel Mont

686

59

Heightism, hierarchies and human rights: how a normalcy of disability infringes on the rights of people with dwarfism Erin Pritchard

691

60

Post-school transition process in a pandemic: how can young people with disability be better supported? Helen Dickinson, Catherine Smith, Amy Marks and Jess Mitchell

706

61

The right to work “on an equal basis with others”: examining disability employment policies in Australia through the lens of a health and economic crisis Sue Olney and Alexandra Devine

721

62

Narrative 18: Sanist wonderland  Damian Mellifont

63

Does the CRPD matter? A comparison of sheltered workshop policies in Japan, Taiwan, and South Korea Yi-Chun Chou, Jun Nakagawa and Eun-Ju Yoo

64

Disability as an enabler of career success and inclusion Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons

756

65

Narrative 19: I want a job Sadiel Albakri

772

66

Social entrepreneurship between earning a living and emancipation: impact of microfinance on people with disabilities in Kenya Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker

773

67

Advancing income security policy using universal design: the case of the Ontario Disability Support Programme in Ontario, Canada Tracy Smith-Carrier

789

68

Narrative 20: Living with a disability: what difference would a guaranteed livable income make? Joe Foster

805

69

A human rights-based approach to assistive technology provision in global policy Catherine Holloway, Giulia Barbareschi, Oriol Valles Codina, Nora Colton, Arne Henning Eide, Zuleima Dafne Morgado-Ramirez, Jamie Danemayer, Rainer Kattel and Victoria Austin

70

Conclusion on disability policy Sally Robinson and Karen R. Fisher

Index

739

741

807

823 830

Contributors

Joao Acharan-Riffo is a political scientist from the Pontificia Universidad Católica de Chile with an MA in public policy at the Diego Portales University. He works as Research Director in Datavoz-Statcom, dedicated to consulting in public opinion studies. He has led consultancies for various public organisms, including Ministerio de Desarrollo Social y Familia and Ministerio de Vivienda y Urbanismo on issues associated with satisfaction with the benefits of the social protection subsystems, subjective well-being, quality of urban life, among others. Supriya Akerkar is the Director of the Centre for Development and Emergency Practice at Oxford Brookes University (OBU), UK. Her research is on social marginalization and inclusion, with a focus on the rights of people with disabilities, older people, women and excluded groups in emergency and development contexts. She has several publications assessing the potential of rights discourses and approaches. She is also a course leader for MA Development and Emergency Practice at OBU. She has an MA in Development Studies from the Institute of Social Studies, The Hague, and a PhD in the area of Disasters and Development, from Northumbria University, UK. Sadiel Albakri lives in Melbourne, Australia. He is a determined job hunter and enthusiastic about his future in work. Sadiel has been involved in youth advocacy in the past, and likes to speak up about things that are important to him. Gabriel Amitsis is an international lawyer and academic, Professor of Social Security Law in the Department of Business Administration (Social Policy Unit) and Director of the Social Administration Research Lab at the University of West Attica in Athens. Elaine Arnull is a Professor and Associate Dean, University of Wolverhampton, UK, and Director of the School of Society and Community, and Visiting Professor, Queensland University of Technology, Australia. Her work is international and collaborative and focuses on the margins around participation, justice, transgression and voice. She has authored books, journal articles and research monographs, and is a Fellow of the Higher Education Academy, qualified social worker and formerly a Probation Officer. Umi Asaka is a Junior Research Fellow at the Donald Beasley Institute where she is Project Coordinator for the Disabled Person-Led Monitoring of the United Nations Convention on the Rights of Persons with Disabilities as well as other disability rights research projects. Having lived experience of disability, cultural diversity and with a social work background, Umi is passionate about envisioning and working towards a society where no one is left behind, through research, activism and community work. Victoria Austin is co-founder and CEO of Global Disability Innovation Hub Community Interest Company, and an Honorary Senior Researcher at University College London. She leads AT2030, a global programme to test what works in getting AT to the people that need it around the world in 28 countries with 40 partners (including WHO, UNICEF and CHAI). She led the Paralympic Legacy Programme from the London 2012 Paralympic Games. Victoria’s xi

xii  Research handbook on disability policy research focuses on social development and disability investigating what enables active citizenship for disabled slum dwellers in Freetown, Sierra Leone. Kara B. Ayers, PhD, is an Associate Professor of Pediatrics and the Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center. She leads the National Center for Disability, Equity, and Intersectionality and is co-founder of the Disabled Parenting Project. Dr Ayers’ interests include disability identity/culture, bioethics, community inclusion, and the use of media to reduce stigma. She infuses the mantra “Nothing about us without us” into all of her scholarly and community-based pursuits. Giulia Barbareschi is a Research Fellow in Disability and Assistive Technology at the UCL Interaction Centre and the Global Disability Innovation Hub. Giulia has worked in hospitals, universities and UN agencies in countries around the world. She leads the research component of AT2030 projects in collaboration with local and international NGOs and start-ups. Her research focuses on understanding how technology can be leveraged to improve the lives of people with disabilities. Giulia’s work lies at the intersection of technology, disability and design with strong influences from disability studies and international development. Bella Bauer is a student of Politics and International Relations at the University of Sydney. She is interested in social policy research; particularly comparative social policy research in the areas of welfare and mental health policy. Denise Beckwith is a PhD candidate at Western Sydney University, and her research explores the sexual lives of women with physical disability in the context of sexuality education provision, sexual expression, and the experience of violence. Denise has worked in the disability-rights space for over twenty years. She is a social work academic who is committed to emphasizing the importance of critical reflection and reflexivity to ensure the rights of people with disability are upheld. Toon Benoot is a Postdoctoral Researcher affiliated to the Department of Social Work and Social Pedagogy at Ghent University. His fields of interests are welfare reform and social work, theories of social justice, and the conceptualization of autonomy and in(ter)dependence. He recently joined the academic workplace on de-institutionalization, which approaches this issue through socio-spatial research. Toon is co-coordinator of the Human Development and Capability Association Thematic Group on Health & Disability. Mario Biggeri is Associate Professor in Development Economics at the Department of Economics and Management, University of Florence. He is the Scientific Director of ARCO – Action Research for Co-Development – and Director of the Scientific Committee of the Yunus Social Business Centre, University of Florence. He has worked for UNICEF and UNDP and has acquired relevant experience in field research about disability and inclusion. He is the co-author of more than 10 books, and he has published extensively in several international journals. He is a Fellow of the Human Development Capability Association and Associate Editor of the Journal of Human Development and Capabilities. Mia Boonen is a university student, theatre maker, educator and writer based in Boonwurrung Country, Australia. She is passionate about representation, access-led artistic processes and finding joy within every community endeavour. Mia is a member of the YDAS’s COVID-19

Contributors  xiii Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Katherine Boydell, PhD, is a sociologist and Head of the AKT (arts-based knowledge translation) Lab at the Black Dog Institute. Katherine uses arts-based participatory action research to explore the lived experience of individuals experiencing mental health issues. Current projects include body mapping with women marginalized by mental illness, disability or refugee status, exploring the experience of anxiety in adolescents using arts-based methods, and using photovoice to explore experiences of women with disability. Her work has identified the theoretical, methodological and ethical challenges of engaging in arts-based knowledge translation. She has published more than 200 journal articles and book chapters and is editing a forthcoming book, Body Mapping in Research. Renata Anahí Bregaglio Lazarte is a Law Professor and Head of the Law School’s Office of Academic Social Responsibility at Pontificia Universidad Católica del Perú. She holds a Bachelor’s in Law and a Master’s in Human Rights from the same university, and Master’s in Fundamental Rights from Universidad Carlos III de Madrid. She founded the Legal Clinic on Disability and Human Rights in 2012 and has led it ever since. She is also a coordinator and researcher at the Interdisciplinary Research Group on Disability of the same university. Eleanor Brown is a Postdoctoral Researcher in rehabilitation based at Oxford Brookes University and has a background in education, social care, and speech-language therapy. Eleanor’s PhD research focused on improving the accessibility of rehabilitation for people with aphasia, a communication impairment after stroke. Her research interests include exploring disabled identity, self-management in rehabilitation, and using a human rights approach to improve social and healthcare access for disabled people, particularly those with communication impairments. As a disabled researcher, Eleanor also has an interest in widening access for disabled people in higher education and research. Anne M. Bryden is a sociologist and occupational therapist with more than 25 years of experience working in spinal cord injury and neurotechnology research. She is Director of Clinical Trials and Research for the Institute for Functional Restoration at Case Western Reserve University, a non-profit committed to expanding technology access to people with paralysis. Her work concentrates on sociology of disability and human rights, by investigating obstacles and facilitators to recovery and reintegration of people who have experienced spinal cord injury. Paula Lucía Camino Morgado holds a Bachelor in Law from Pontificia Universidad Católica del Perú. She is an independent consultant and researcher on human rights. She previously worked as a legal assistant at her law school’s Office of Academic Social Responsibility. Paula is an Adjunct at the Legal Clinic on Disability and Human Rights and in procedural law classes, and a researcher at the Interdisciplinary Research Group on Disability of the Pontificia Universidad Católica del Perú. She focuses her practice on using communications to foster diversity, equity and inclusion in different spaces.

xiv  Research handbook on disability policy  

Maria Engrácia Cardim is a researcher at the Center for Administration and Public Policy from the University of Lisbon. She was professor at ISCSP teaching in graduation, MSc and PhD programmes. She holds a PhD in Social Sciences, specializing in Public Administration, from the University of Lisbon. Her research interests are public policies, policy implementation, social policies, education and training policies, and disability studies from a human rights perspective. In addition to her academic career, she has more than 10 years of experience as manager in Portuguese public administration and public institutes. María Gómez-Carrillo de Castro is a Marie Sklodowska-Curie Fellow with the Project Disability Advocacy Research in Europe. She is currently finishing her PhD in Social Policy at the Instituto Superior de Ciências Sociais e Políticas of the University of Lisbon. Tim Chan is an autistic non-speaker who learned to communicate via typing on a speech-generating device at age nine. With a means to communicate, Tim has completed mainstream schooling to study sociology at university. Tim is passionate about advocating for disabled young people, especially those without speech like himself, who are an extremely marginalized group, and seldom included in conversations on disability. Tim is a member of the YDAS COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, that works with young people with disability aged 12 to 25 to ensure their human rights are met. Heng-hao Chang is a Professor from the Department of Sociology, National Taipei University, Taiwan. He is the founding president of the Taiwan Society for Disability Studies. His research interests include disability rights movements, representation of disabilities, and inclusive education. He has a long publication history, including the edited volume Disability Studies: Theories and Policy Implication, which introduces disability studies to Chinese language. Chien-Ju Chou is a Taiwanese female disabled activist and the founding director of Taiwan Disabled Women’s Alliance for Equal Rights. Yi-Chun Chou is Professor in the Department of Sociology at Soochow University, Taipei, Taiwan. She holds a PhD in Sociology from Ruprecht-Karls-Universität Heidelberg in Germany. Her research interests include disability employment policies, deinstitutionalization of disability care policies, and comparing disability policies. In recent years, her research focused on the effects of the Convention of Rights for Persons with Disabilities in different welfare regimes. She is the Director of the Chang Fo-Chuan centre for the study of human rights in Soochow University. Federico Ciani is the coordinator of the Inclusive Development research unit at ARCO – Action Research for Co-Development. He focuses his research on disability, inclusion and resilience. Over the years, he has gained strong experience in the field of applied participatory quali-quantitative research co-operating with relevant institutions (e.g. Action Aid, UNDP, UNICEF) both in Europe and in the Global South (e.g. Palestine, Ethiopia, Kenya, Senegal, Tanzania, etc.). He is Adjunct Professor in Management of Complex Humanitarian Emergencies at the University of Florence. He works on relevant European research projects (FP7, H2020) and publishes his research in relevant journals.

Contributors  xv  

Mariano Coello has a Master’s in Clinical Psychology and has worked for over 30 years with migrants and refugee survivors of torture and organized violence. He has held several clinical positions at the NSW Service for the Treatment and Rehabilitation of Torture and Trauma Survivors (STARTTS) where he is currently the Clinical Services and Research Coordinator. Mariano is at present involved in a number of national and international research projects related to best and innovative practice in refugee trauma treatment. He has represented STARTTS in many forums and conferences nationally and internationally and is the co-author of journal articles and book chapters on issues related to refugee trauma. Nora Colton is a Professor of Health Management and Director of the Global Business School for Health (GBSH) at University College London, UK. Nora is a health and development economist. She has undertaken projects in various countries in the Middle East as part of her research and publications. Her current research compares healthcare financing models across different national health systems as well as research on questions concerning leadership and management in healthcare. Renato Antonio Constantino Caycho is a Law Professor at Pontificia Universidad Católica del Perú. He holds a Bachelor’s and Master’s in Human Rights from the same university, and an LLM in International Legal Studies from American University Washington College of Law. He is an Adjunct Professor at the Legal Clinic on Disability and Human Rights. Renato is a researcher at the Interdisciplinary Research Group on Disability of the Pontificia Universidad Católica del Perú. Laureane Marília de Lima Costa is a scholarship psychologist at the Coordination of Special Pedagogical Actions at the Federal University of Jataí (CAPE/UFJ), external collaborator at the Laboratory of Inclusive Education of the University of the State of Santa Catarina (LEdI/ UDESC), researcher at the Cáue Institute – Inclusion Networks, doctoral student in Education in the Faculty of Education of the University of São Paulo and has a Master’s in Education from the Federal University of Jataí (PPGE/UFJ). She is part of the study groups of the Center for Disability Studies at the Federal University of Santa Catarina (NED/UFSC) and the Laboratory of Inclusive Education at the University of the State of Santa Catarina (LEdI/ UDESC). She is interested in emancipatory sex education, feminist disability studies, inclusive education, and higher education. She lives with a high level of physical impairment due to disability and both lives and researches the politics and policy of care relations. Mariana Lúcia Agnese Costa e Rosa is a journalist and Master’s student in Education at University of São Paulo. Mariana is founder of the Cáue Institute and member of the Helen Keller Feminist Collective. Mariana is a disability rights activist, inclusive education consultant, and mother, interested in inclusive education, human rights, and ethics of care themes. Tillie Curran is a Visiting Fellow at the University of the West of England, UK, working in co-production research around disability rights and robotics and teaching in social work around disabled children’s childhood studies. Jamie Danemayer is a Research Assistant on the AT2030 project at the Global Disability Innovation Hub and the International Centre for Evidence in Disability at LSHTM. Her career in population health data science focuses on improving health equity and increasing access

xvi  Research handbook on disability policy to assistive technology. Jamie has led collaborative research with the WHO, International Research Council on Artificial Intelligence, and European Disability Forum. Sheelagh Daniels-Mayes is an Indigenous Australian Kamilaroi woman who lost her eyesight as a child. At the time of writing this chapter, Sheelagh was located with the Indigenous Research Hub at The University of Sydney, coordinating the Sydney Indigenous Research Network. Her current position is Lecturer Indigenous Studies and Deputy Associate Dean, Diversity and Inclusion, Disability with the Faculty of Arts, The University of Melbourne. Her work focuses on Aboriginal education, Indigenous studies and methodologies, and she is a disability scholar and activist. Sheelagh is particularly concerned with higher education’s responsibilities in achieving equity and social justice for society’s marginalized people. She uses Critical Race Theory, cultural responsiveness, Critical Access Studies and intersectionality alongside Indigenous methodologies. Sheelagh acknowledges the unceded First Nations lands upon which she works and lives. Sunil Deepak is an expert in Disability Studies, with additional training in Epidemiology and Biostatistics. Over the past decade, he has been engaged in two main areas of research and consultancy in different low- and middle-income countries (such as India, Palestine, Liberia, Mongolia), namely emancipatory disability research and assistive technology services. He has specific experience at international level in training, quantitative and qualitative research, preparation of learning materials, feasibility studies, project management and project monitoring and evaluation. He has been closely associated with the International Disability and Development Consortium. He has collaborated extensively with different UN organizations, especially the World Health Organization. He is a peer reviewer for different international journals and has a strong record of publications. Alexandra Devine is a Senior Research Fellow in the Centre for Health Equity in the Melbourne School of Population and Global Health at the University of Melbourne. Her local and international work focuses on mental health and disability. Alexandra focuses on experiences and outcomes of people with disability engaged with systems such as the National Disability Insurance Scheme and Australia’s Disability Employment Services Program. Angela Dew, PhD, is a sociologist with 40 years’ experience in the Australian disability sector. Her research and teaching relates to understanding the intersections that impact on the lives of people with disability due to a range of complex support needs. Her work includes people with disability from refugee and asylum seeker backgrounds, those living in rural and remote locations, and people from Aboriginal and Torres Strait Islander backgrounds. Angela uses co-designed qualitative and arts-based methods within an integrated knowledge translation framework to ensure her research results in practical solutions that can be tailored to individuals and local communities. Em Dewhurst is a 23-year-old Queer and Disabled youth advocate based in Naarm, Australia. They work as a Jobs Victoria Advocate at a Settlement Not for Profit and a Together Facilitator at YDAS. They have been involved with mental health, LGBTQIA+ and other disability organizations. They have a passion for intersectionality and creating accessible spaces. Em is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS)

Contributors  xvii is an organization in Victoria, Australia, that works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Helen Dickinson is Professor of Public Service Research in the Public Service Research Group at the School of Business, University of New South Wales, Canberra. Her expertise is in public services, particularly in relation to topics such as governance, policy implementation and stewardship of fourth industrial revolution technologies. Sarah Donnelly is an Assistant Professor in Social Work at UCD School of Social Policy, Social Work and Social Justice. She is co-convenor of the European Network for Gerontological Social Work, and her research interests include ageing and dementia, adult safeguarding and capacity and decision making. Sarah is a registered social worker and an active member of the Irish Association of Social Workers. Arne Henning Eide is Chief Scientist at the Department of Health Research, SINTEF Digital, Oslo, Norway, and Professor at Norwegian University for Science and Technology, Trondheim, Norway. He has 25 years of experience within Global Health and Disability, and more specifically in disability statistics, health services, assistive technology and rehabilitation. Eide has been engaged as an expert by several international organizations and recently contributed as a scientist and as a member of the editorial team for the WHO’s Global Report on Assistive Technology. Alexander Elliott is a member of the Australian Society of Authors and a writer. He works at the Council for Intellectual Disability as a Project Worker. In his work, Alex uses his expert knowledge from his own experiences as a person with disability and his skills to make resources and training. Brooke Ellison is a Professor of Medical Ethics and Disability at Stony Brook University, New York, where she researches and teaches future engineers, physicians, and healthcare professionals how to incorporate the lives and needs of people with disabilities into their work. Professor Ellison has a spinal cord injury, which means technology is deeply integrated into her life as well as her work. Paul Emong is Lecturer in the Department of Community and Disability Studies and Head of Disability Support Services at Kyambogo University. He has seven years’ experience in lecturing at a university and altogether 22 years’ work experience in community development and disability inclusion. Prior to joining teaching, Paul worked for Disability Rights NGO in Uganda for 10 years. Paul holds a PhD from the University of Leeds, UK, a Master of Arts in Human Rights from Makerere University, Postgraduate Diploma in Project Planning and Management of Uganda Management Institute and Bachelor of Statistics from Makerere University, Uganda. Paul’s research interests are in inclusive development, inclusive education, social justice principles and practices. Delia Ferri is a Professor of Law at Maynooth University (MU) and co-Director of the MU Assisting Living & Learning Institute. Delia is also an affiliated researcher at the DIRPOLIS Institute of Scuola Superiore Sant’Anna (Italy), an international Fellow at the Burton Blatt Institute of Syracuse University (USA), and a member of the Royal Irish Academy Ethical, Political, Legal and Philosophical Studies Committee. She has authored several academic publications focusing on the rights of people with disabilities, participatory processes, and

xviii  Research handbook on disability policy cultural diversity. Delia is currently Principal Investigator of the DANCING project, funded by the European Research Council. Jo Ferrie is a leading disability studies scholar based at the University of Glasgow. She has written extensively on the value of a human rights framework to remove disabling barriers to being and doing, writing on rights and caring, measuring rights and on realizing rights for disabled people. As a member of the Research Advisory Group to the Scottish Human Rights Commission, Jo has completed several projects including an evaluation of Scotland’s National Action Plan for human rights. Jo is an internationally recognized methodologist and also works with the Scottish Graduate School of Social Sciences as Deputy Director for Training. Luciano Bottini Filho is a Lecturer in Human Rights Advocacy at Sheffield Hallam University and researches the international right to health within health technology assessments. He holds an LLM in Human Rights from the University of Nottingham, as a Chevening Scholar, by nomination of the UK Foreign Commission Office Affairs Committee, drafting reports on health policies such as nudge laws, stress at work and palliative care. As a journalist, Luciano had occupied numerous reporting roles in Latin America for the major news outlets in the region for 10 years, covering human rights violations in the war on drugs, mass trials, judicial activism and decisions on socio-economic rights. Karen R. Fisher is a Professor at the Social Policy Research Centre, UNSW Sydney. Her research interests are the organization of social services in Australia and China; disability and mental health policy; inclusive research and evaluation; and social policy process. Karen applies mixed methodology and adopts inclusive research methods with people with disability, families, policy officials and services providers. Joe Foster is passionate about advocating to address the many ills that poverty creates, due to his first-hand experiences as a person who is now blind. Joe has a BSc in Electrical Engineering followed later with an MBA in Business Economics. Since graduating he has been involved both in volunteerism and as an international worker in Global South countries and in Canadian disability and political advocacy. Patsie Frawley is an Associate Professor of Disability and Inclusion Studies at the University of Waikato in Hamilton, New Zealand. She has been researching about sexuality and relationships alongside people with intellectual disabilities for over two decades internationally. Her research has informed policy and practice in this area where she continues to advocate for recognition of sexuality, and reproductive and relationship rights for all people with disabilities. Jennifer French is the Founder and Executive Director of Neurotech Network, a non-profit organization that focuses on education and advocacy of neurotechnologies, and is the current President of the North American SCI Consortium. She serves on several advisory boards including the IEEE Neuroethics Initiative, NINDS Common Data Elements, OpenMinds platform and the American Bionics Project. She is the current Chair of the CDMRP Spinal Cord Injury Research Program programmatic committee. She is the author of On My Feet Again (Neurotech Press, 2013) and is co-author of Bionic Pioneers (Neurotech Press, 2014). French lives with tetraplegia due to a spinal cord injury, is an early user of an implanted neural prosthesis and is a Paralympic silver medalist. Her latest TED talk is available: https://​www​.youtube​.com/​watch​?v​=​tkspAQW​_2sQ.

Contributors  xix Olivia Geehan is completing a degree in social work. She is interested in the interaction between research and policy. Marivete Gesser is a Professor on the Post-Graduate Program in Psychology at Federal University of Santa Catarina (UFSC), Coordinator of the Center for Disability Studies (NED-UFSC) at the same university, and a member of the Gender Studies Institute (IEG). Dr Gesser’s studies focus on the following topics: intersections of gender, sexuality, race, poverty, and disability in Brazil; psychology and disability studies; public policy and human rights for people with disabilities; disability justice and inclusive education. Gerard Goggin is Professor of Media and Communications at the University of Sydney. From 2019–2022, he was Wee Kim Wee Professor of Communication Studies, Nanyang Technological University. Gerard has a longstanding interest in social justice, communication, and emerging digital technologies, reaching back to the early 1990s when he worked as Policy Advisor for Consumers’ Telecommunications Network. He has a particular interest and involvement in disability, accessibility, technology, and social justice issues, with key books including Digital Disability: The Social Construction of Disability in New Media (Rowman & Littlefield, 2003), Disability in Australia (UNSW Press, 2005), Disability and the Media (Palgrave, 2015), Normality & Disability (Routledge, 2018), and the Routledge Companion to Disability and Media (Routledge, 2020). Dan Goodley is Professor of Disability Studies and Education and C-Director of the iHuman Research Institute at the University of Sheffield, UK. Brian Gran is a sociologist and lawyer in the faculty of the Sociology Department, Law School, and Mandel School of Applied Social Sciences of Case Western Reserve University (USA). His scholarship concentrates on human rights, law, and social policy. Gran was a Jefferson Science Fellow appointed to the US State Department (2020‒2021). He has consulted with the UN on the human right to science around discrimination and disability. As Chair of Hope for Children Policy Center, Gran advises on rights of young people who have disabilities. He gained insights into limitations of rights while representing individuals in disability legal cases. Giampiero Griffo is a member of the World Council of DPI (Disabled People International) and holds relevant roles in several DPOs (EDF, FID, FISH). He is the coordinator of the Italian National Observatory on Disability (the monitoring body on implementation of CRPD in Italy), chairperson of the Italian Network on Disability and Development and member of the San Marino Bioethics Committee. He was a member of the Italian delegation which contributed to the drafting of the CRPD. Moreover, he is Co-director of the Center for Governmentality and Disability Studies Robert Castel from Suor Orsola Benicasa University of Naples. He has published several articles and essays on bioethics, human rights, employment, inclusive education, universal design, emancipatory research, emergency, social welfare, international cooperation and more. Paul Harpur is an Associate Professor with the University of Queensland Law School, former Paralympian and chairs the University of Queensland Disability Inclusion Group. He has published several monographs with Cambridge University Press as well as publishing widely in legal and disability studies journals in Australia, the US and the UK. In 2019 Paul was awarded a Fulbright Future Scholar that enabled him to study at Harvard Law School and he maintains

xx  Research handbook on disability policy ongoing fellowships with the Harvard Law School Project on Disability and with the Burton Blatt Institute at Syracuse University. Paul’s sector leading work on disability inclusion led to him being appointed to the Universities Accord Ministerial Reference Group. Paul wishes to acknowledge the Turrbal and Jagera people, who are the traditional custodians of the land on which the University of Queensland is situated. Julio Hasbún-Mancilla is a social anthropologist, Director of Symbolon Consulting, and Professor in the Department of Industrial Engineering at the Universidad de Chile. His research interests are the processes of communication and participation in Chile; multilevel interventions of public health policies, on issues such as disability, water, zoonosis, among others, from a health promotion approach. Julio is co-coordinator of the Indigenous People thematic group of the Human Development and Capability Association. Maree Higgins, BSW(Hons), PhD, is a Senior Lecturer in Social Work, convenes the BSW(Hons) discipline in the School of Social Sciences, UNSW, and has extensive experience in social work practice. Her research focuses on how people’s cultures and lived experiences shape their understandings of human rights, significant life transitions and well-being, and how poetry, metaphor and storytelling are useful in intercultural research. Current projects include ethics in CBPR with people from refugee backgrounds, care of older people, the criminalization of missing girls, and disability policy and practice with people from refugee backgrounds. Catherine Holloway is Academic Director and co-founder of the Global Disability Innovation Hub and UCL Professor of Interaction Design and Innovation. Catherine leads the research and innovation clusters of AT2030 and is a member of the WHO Expert Advisory Group on Assistive Technology. Catherine’s research portfolio focuses on the social use of technology, developing innovation tools and systems to increase the range of inclusive solutions and developing measurements of benefit which are rooted in human capabilities. Sarah I. Huque completed her PhD in Geography at the University of St Andrews. Her doctoral research involved working with Malawian disability rights advocates, exploring their experiences of activism in a participatory and co-designed project. Sarah’s broader career has involved work at the intersection of public health and social justice, with an interest in methodological innovation. She is currently a Research Fellow on the Suicide Cultures: Reimagining Suicide Research project at the University of Edinburgh. Mary Ann Jackson has qualifications and/or accreditations in Applied Science, Architecture, Urban Planning, Sustainability, and Access Consulting. She has 30+ years’ experience in built environment research, design, implementation, and assessment. Her innovative work around people with disabilities’ lived experience of built environment accessibility, disaster reconstruction, and equitable housing has received recognition locally and internationally. She is currently undertaking a PhD focused on human rights-based approaches to improving neighbourhood built environment accessibility. Mary Ann is also the Director of Visionary Design Development Pty Ltd, a transdisciplinary consultancy working across Accessibility, Research, and Architecture, and a member of the IAAP Accessible Built Environment Taskforce.

Contributors  xxi  

Sionainn Jans is a 21-year-old autistic woman from rural Victoria who was diagnosed at the age of three, fuelling her passion for disability inclusion and advocacy, specifically among autistic women. Outside of this, she works full-time and enjoys spending time in nature, travelling locally with her dogs and writing creatively. Catherine Elisa John is a PhD Researcher in Mental Health and Wellbeing at the School of Health Sciences, University of Nottingham, UK. Her research interests include mental health, recovery, homelessness, and gender. In her current doctoral work, she makes a feminist enquiry of mental health recovery among homeless women in Kerala, India. Kelley Johnson, BA, MA, PhD, is an internationally recognized scholar in the fields of disability, institutional closure, social inclusion, rights and gender. She currently holds two honorary professorships at Deakin University and UNSW in Australia. She has researched and authored extensively in the field of disability with particular focus on research with people with learning disabilities. Her research is applied and aims to better understand the barriers that people with disabilities encounter in living good lives and to ensure that their voice is heard in research, policies and practice relating to issues central to their well-being. Mahuya Kanjilal is a Senior Lecturer of Social Work and Social Care at the University of Wolverhampton. She is a social researcher specializing in community participatory research with minority ethnic communities in the UK. Her main focus is engaging diverse communities in academic research and including service users’ voice. Rainer Kattel is Professor and Deputy Director at the Institute for Innovation and Public Purpose, UCL. He has published extensively on innovation policy, its governance and specific management issues. His recent books include The Elgar Handbook of Alternative Theories of Economic Development (edited with Erik Reinert and Jayati Gosh; Edward Elgar Publishing, 2016), and How to Make an Entrepreneurial State. Why Innovation Needs Bureaucracy (with Wolfgang Drechsler and Erkki Karo; Yale University Press, 2022). Grace Khawam is a disability activist, a Lecturer in Public Health at the American University of Beirut, Lebanon, and a PhD candidate in Disability and Development at Oxford Brookes University (UK). Her research focuses on job readiness and employment for youth with intellectual disabilities. She is a Steering Committee member of the Disability Hub in Lebanon. She holds an Associate Fellowship in Higher Education Teaching, a Doctorate in Pharmacy and a Master’s degree in Public Health. She also has a certificate in Global Mental Health from Harvard University, with a focus on refugee trauma. Naonori Kodate is an Associate Professor in Social Policy and Social Robotics at University College Dublin and the founding Director of UCD Centre for Japanese Studies. His research interests include comparative public policy, gender equality in STEM education, patient safety, and science, technology and society (STS), particularly in the use of assistive technologies in health and social care. He is the Principal Investigator of an interdisciplinary international research project “Harmonisation towards the establishment of Person-centred, Robotics-aided Care System (HarP:RoCS)”, and co-produced a documentary film entitled Circuits of Care: Ageing and Japan’s Robot Revolution.

xxii  Research handbook on disability policy  

Mukta Kulkarni is a Professor at the Indian Institute of Management Bangalore, Karnataka, India. Her research is focused on inclusion of employees with disabilities across workplaces. Her work has been published in journals such as the Academy of Management Journal, Human Relations, the Leadership Quarterly, and the Journal of Organizational Behavior. Nicole Laurance is a critical social work practitioner who focuses on fostering inclusive and equitable civic engagement in order to build socially just communities. Nicole is an educator who teaches social work and social science units at Western Sydney University, as well as social work units at the Australian College of Applied Professions. Ann Leahy is a Postdoctoral Researcher in Sociology with the DANCING project funded by the European Research Council and based in Maynooth University. Formerly, she was Assistant CEO of an NGO, Age & Opportunity, with responsibility for policy and public affairs and for the organization’s work on arts and culture. She is also a qualified solicitor. Her book, Disability and Ageing – Towards a Critical Perspective (Policy Press 2021), based on her PhD research, examines intersections between disability and ageing. Academic awards include postgraduate and postdoctoral awards from the Irish Research Council and a Hume Scholarship from Maynooth University. Kirsty Liddiard is Senior Research Fellow in the School of Education and the iHuman Research Institute at the University of Sheffield, UK. Cindy Liu (She/Her) is an avid youth advocate and a university student. She is passionate about increasing mental health literacy, disability rights and diverse representation through her focus on bringing forth the voices and concerns of young people and exploring how society, culture, identity and spaces affect young people. She has done work with various organizations exploring the spaces of intersection such as youth, disability, mental health and diverse backgrounds. Cindy is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Karla Garcia Luiz is a Brazilian psychologist from the Catholic University of Santos (UNISANTOS), she holds a PhD in Social Psychology from the Federal University of Santa Catarina (UFSC). She is a member of the Center of Disability Studies (NED/UFSC) and researcher at the Cáue Institute – Inclusion Networks. She is a federal civil servant, working as a psychologist at the Federal Institute of Education of Santa Catarina (IFSC), interested in feminist disability studies, ethics of care, inclusive education and disability justice. Karla writes from her lived experience as a mother with disability. Sellah Lusweti holds a PhD in Educational Psychology (Measurement and Evaluation), she is a Lecturer in the Department of Educational Psychology and Special Needs at Pwani University, and has 10 years’ experience in teaching, research and community service. She is a seasoned researcher and consultant on quality of education (with a focus in monitoring and evaluation) in relation to gender, resource provision, peace education, and ethics and integrity. She has special interest in enhancing resilience to overcome the impact of adversity on learning and livelihood.

Contributors  xxiii Brent Lyons is York Research Chair of Stigmatization and Social Identity and Associate Professor of Organization Studies the Schulich School of Business at York University, Ontario, Canada. His research explores how processes of stigmatization and marginalization play a role in employees’ work experiences, including how these processes disadvantage employees’ access to power and resources in organizations, and how employees challenge and overcome these disadvantages. His research has been published in the Academy of Management Review, Journal of Applied Psychology, Organizational Behavior and Human Decision Processes, and the Journal of Management. Yurie Maeda lectures at Technological University Dublin in the areas of business and ICT. Following her postgraduate qualifications in software engineering she gained extensive IT and project management experience in industry with a number of large multinational companies. Her current research interests include assistive and smart technologies, project management, electronic commerce and pedagogical practices for undergraduate teaching. Yvette Maker is a Senior Lecturer at the University of Tasmania’s Faculty of Law. She has a background in law and policy, with a particular interest in the intersections of disability rights and feminist perspectives. With Bernadette McSherry, she co-edited Legal, Policy and Practical Responses to Restrictive Practices in Health Care and Disability Settings (Routledge, December 2020). Her book, Care and Support Rights After Neoliberalism, was published in 2022 (Cambridge University Press). Hasheem Mannan completed his PhD on disability policy and family studies at the University of Kansas. Prior to his appointment at University College Dublin he was a Senior Research Fellow at the Nossal Institute for Global Health, University of Melbourne. He held a Marie Curie Fellowship at the National Institute for Intellectual Disabilities, Trinity College Dublin and has worked for the University of Kansas, the World Health Organization, the US National Center for Health Statistics, and the National Disability Authority (Ireland). Hasheem’s areas of expertise include content analysis of health policies; human resources for health and service delivery; and social inclusion. Flavia Marcello is Associate Professor at Swinburne University’s School of Design where she teaches the history, theory and practice of architectural design with a particular focus on the inter-relationship between art and architecture, between design and health. Flavia also conducts action research in the role of design to improve health outcomes. Design studios are used to explore new paradigms for aged care, in particular for people with dementia. She is a leader of the Career Development team within SWAN (Swinburne Women’s Academic Network) and has also worked as Professional Development Manager at the Australian Institute of Architects. Fotini Marini, PhD in Social Welfare Law, MA in Social Law and BA in Law, is a social law and policy expert, Head of the Social Welfare and Inclusion Hub in the Social Administration Research Lab (https://​sarl​.uniwa​.gr) at the University of West Attica in Athens (www​.uniwa​ .gr). Amy Marks is the Youth Connection and Development Officer in the Youth Action Team for Children and Young People with Disability Australia.

xxiv  Research handbook on disability policy  

Abi Marutama is a Human Rights Analyst working on disability rights legislation at the Indonesian Ministry of Law and Human Rights. As a person with visual impairment and legal scholar, he works closely with international organizations and mainly the US government to promote better disability rights policies and exchange information on the implementation of the Indonesians with Disability Act which led him receive the 2020 US Alumni Impact Award. Fiona McKay, PhD, is Associate Professor in the School of Health and Social Development at Deakin University. Dr McKay is a qualitative researcher who works with human rights and vulnerable populations. She has several years’ experience exploring inequities and inequities experienced by groups whose lives are impacted by social and institutional policies and negative community perceptions. Damian Mellifont leads and contributes to studies that advance the economic and social inclusion of people with disability through his position of Lived Experience Postdoctoral Fellow. Dr Mellifont is a member of the Centre for Disability Research and Policy leadership team at The University of Sydney and lead of the lived experience-led research work stream. Anahí Guedes de Mello is an anthropologist with a PhD in Social Anthropology from the Federal University of Santa Catarina (UFSC). She is currently a collaborating researcher at the Center for Disability Studies (NED) at UFSC and an Associate Researcher at Anis – Institute of Bioethics, based in Brasília. Ms Guedes de Mello is also coordinator of the Brazilian Association of Anthropology (ABA) Committee on Disability and Accessibility and a member of the Latin American Council of Social Sciences (CLACSO) Working Group for Critical Studies on Disability. Brigit Mirfin-Veitch is Director of the Donald Beasley Institute. As a sociologist, Brigit has a strong interest in understanding the social lives of people with learning disability and is committed to initiating and achieving social change through research. She is also a Research Associate Professor with the Centre for Postgraduate Nursing Studies, University of Otago, Christchurch. Jess Mitchell is a Storytelling and Development Officer in the Youth Action Team for Children and Young People with Disability Australia. Sophie Mitra is a Professor in the Department of Economics, co-director of the Disability Studies Program and founding director of the Research Consortium on Disability at Fordham University. Her research interests relate to disability, health, international development and social protection. She is the author of Disability, Health and Human Development (Palgrave MacMillan, 2018). She has studied the economic impact of disability and mental illness, multidimensional poverty, the association between disability and poverty, and the definition of disability. Daniel Mont is the CEO and Founder of the Center for Inclusive Policy, as well as a Senior Honorary Research Fellow at the Leonard Cheshire Disability and Inclusive Development Centre at University College London, working on issues of inclusive development, disability and poverty, and inclusive social services in developing countries. He works with a wide range of international agencies, bi-lateral aid agencies, and NGOs. He previously worked at the World Bank where he worked extensively on disability issues for six years, also serving as the

Contributors  xxv chair of the analysis working group for the United Nation’s Washington Group on Disability Statistics. Zuleima Dafne Morgado-Ramirez is Senior Research Associate at the University College London (UCL) Interaction Center and at the Global Disability Innovation Hub and a member of the Global Cooperation on Assistive Technology and founder of the Neurodivergent Staff Network at UCL. Zuleima’s research is across disability, assistive technology, disability studies, human–computer interaction, social development, and biomedical engineering. Zuleima is passionate about multidisciplinary research that aims to achieve technology that is affordable, appropriate, accessible, and inclusive. Zachary A. Morris, PhD, is an Assistant Professor at the Stony Brook School of Social Welfare and a Senior Associate at the Center for Inclusive Policy. He has published widely on the financial and social inclusion of people with disabilities worldwide. He is currently leading a US government-funded project quantifying disability-related costs and un-met needs for people with disabilities in the US. Mahmoud Murad, researcher, is a person with disability from Syria. After school he worked in a printing press, forming a trade union committee in 2009 to demand a reduction from >70 hours per week. During the Syrian revolution he was a citizen journalist, launched a magazine, and worked with the Red Crescent. In 2013 he moved to Lebanon, volunteering in civil society work and refugee rights. In 2014 he resettled to Australia and created The Syrian Australian Forum network in Australia on Facebook. In 2016 he won the Questathon Startup competition for his website RefugeeHub.com.au. Mahmoud is a bi-cultural researcher at UNSW examining human rights using arts-based research methods and studying youth perspectives on “The Cultural View of Disability”. Julieth Musengi is a qualified nurse with experience in palliative care, advocacy, health promotion and child protection. A practising public health specialist, her interests lie in promoting access to health by children, disabled persons and other underserved minority groups within society. She is a member of International Association for Hospice and Palliative Care and is a certified Palliative Care State Final Examiner for the Oncology Palliative Care Nursing diploma in Zimbabwe. Martin Musengi is Associate Professor of Deaf Education and Inclusive Education at Great Zimbabwe University where he is Director of Quality Assurance and Academic Planning. He is a Fulbright Scholar (Gallaudet University – Washington, DC) whose research interests revolve around disability rights and disability activism, sign language ideologies and indigenous knowledge systems. He is co-editor of the book Inclusion as Social Justice: Theory and Practice in African Higher Education (Brill, 2020). Martin also serves on the editorial boards of three journals: Deafness and Education International, Dzimbahwe Journal of Multidisciplinary Research, and Journal of New Visions in Educational Research. Jun Nakagawa is a Professor at the Faculty of Contemporary Law, Tokyo Keizai University (Tokyo University of Economics). He is a nationally recognized expert in disability law, especially in the areas of disability discrimination, disability employment policy to transition into open labour market, and independent living. He also chaired two reports about reasonable accommodation to the Minister of Cabinet Office. Internationally, he has worked with foreign

xxvi  Research handbook on disability policy governments, non-governmental organizations, and academic institutions on disability rights laws in Australia, Canada, China, Taiwan, Thailand and the US. Sue Olney is a Policy Research Fellow in the Melbourne Disability Institute at the University of Melbourne, and a Visiting Fellow in the Public Service Research Group at UNSW Canberra. Her research examines market-based reform of public services, with a focus on welfare-to-work policy and disability. She has worked in government and the not-for-profit sector and has been involved in numerous cross-government and cross-sector initiatives, committees and working groups to promote access and equity in employment, training and disability services in Australia. Diarmuid O’Shea (MD) is a Consultant Physician in Geriatric and General Medicine at St Vincent’s University Hospital, Dublin. He was the Registrar of the Royal College of Physicians of Ireland (RCPI) between 2014 and 2020. He served as Vice-President of Education and Professional Development at RCPI. He was also the National Specialty Director in Geriatric Medicine in Ireland, the President of the Irish Gerontological Society of Ireland and a Clinical Lead for the National Clinical Programme for Older People. Pey-chun Pan is an Assistant Professor in the Department of Social Work, National Pingtung University of Science and Technology, Taiwan. Her research is on accessibility, transport policy for disabled people, and social movement of people with Hansen’s Disease in Taiwan. She has joined several research projects about independent living policy, reasonable accommodation on health issues, and the development of Taiwan human rights indicators for UNCRPD. She is also a horticultural therapist. She has published several journal articles in Community Development Journal Quarterly, Journal of Disability Research, and Taiwan: A Radical Quarterly in Social Studies. Martin Partridge, BA (Hons), PGDip, MA, PhD, is Programme Lead for Social Care and Health & Wellbeing, Senior Lecturer of Social Care, University of Wolverhampton, UK, and Fellow of the Higher Education Academy. Martin specializes in Chinese diasporic communities with a focus on policy development, sociological perspectives of disability and culture and World Café methodology. Aneesh Peter is a PhD Researcher in Sociology at the Department of Sociology, University of Hyderabad, India. His research interests include disability, education, work, and corporeality. His doctoral work focuses on the corporeality of disabled people in workspaces. David Pettinicchio is an Associate Professor of Sociology at the University of Toronto and the Munk School of Global Affairs and Public Policy, Canada. His work lies at the intersections of inequality, political sociology, culture, social movements, policy, and disability. He is the author of the book Politics of Empowerment (Stanford, 2019) and has recently published numerous studies on the impacts of COVID-19 on disability, economic insecurity, and mental health. Paula Campos Pinto holds a PhD in Sociology from York University, Canada. She is an Associate Professor at the School for Social and Political Sciences (ISCSP) of the University of Lisbon where she also coordinates the Observatory on Disability and Human Rights (http://​ oddh​.iscsp​.utl​.pt/​index​.php/​pt/​), a platform gathering disability researchers and activities to develop research and policy advice on disability policy. Her research interests span disability

Contributors  xxvii policy and human rights, disability and gender, and disability in the Global North and South and she has published extensively at national and international levels on those topics. She is a member of the core research team of European Disability Expertise (former Academic Network of European disability experts). Eban Pollard is a Project Coordinator with Inclusion Australia, Australia’s peak body for people with an intellectual disability. Eban has worked in disability advocacy in Australia and Indonesia for nine years and is passionate about supporting organizations run by and for people with a disability. Lengga Pradipta is currently a PhD Researcher in the Institute of Asian Studies, University of Brunei Darussalam. She is also working for the Indonesian government in the National Research and Innovation Agency (BRIN). She focuses on gender and development issues particularly in Southeast Asia. Michael J. Prince is the Lansdowne Professor of Social Policy at the University of Victoria, Canada. He is the author of Absent Citizens: Disability Politics and Policy in Canada (University of Toronto Press, 2009), Weary Warriors: Power, Knowledge, and the Invisible Wounds of Soldiers (with Pamela Moss, Berghahn Books, 2014), and Struggling for Social Citizenship: Disabled Canadians, Income Security, and Prime Ministerial Eras (McGill-Queen’s University Press, 2016). Erin Pritchard is a Senior Lecturer in Disability Studies at Liverpool Hope University. She is also a core member of the Centre for Culture and Disability Studies. Her recent book, Dwarfism, Spatiality and Disabling Experiences (Routledge, 2021), adopts an interdisciplinary approach, by drawing on theories within human geography and disability studies to explore the social and spatial experiences of people with dwarfism. She co-edited a special issue on representations of dwarfism for the Journal of Literary and Cultural Disability Studies. Her work has also appeared in Disability and Society and the Scandinavian Journal of Disability Research. Peter Raisbeck is Associate Professor of Architectural Practice at the Melbourne School of Design University of Melbourne. He has published around 60 book chapters, and journal and conference papers. In September of 2018 he was diagnosed with Motor Neurone Disease. In 2020 Peter undertook a number of online poetry writing workshops at the Victorian Writers Centre with the poet Andy Jackson. He is currently working towards publishing a chapbook of his poetry. Kim Robinson, PhD, has been a social work practitioner and manager in community health and refugee services, and an academic in Australia, Timor Leste and the UK, and is currently a Senior Lecturer in Social Work at Deakin University. Kim’s research interests are focused on frontline healthcare and social workers working with refugees and asylum seekers, service provision in health and social work settings, family violence, human rights, strategies for community development and empowerment of CALD communities. She has published in the areas of asylum and refugee mental health, family violence, and social justice issues with young unaccompanied minors.

xxviii  Research handbook on disability policy  

Sally Robinson is Professor of Disability and Community Inclusion, Flinders University, Australia. Focused on opportunities and barriers to inclusive lives for people with disability, Sally’s work takes an interdisciplinary and collaborative focus to resolving key social policy concerns such as safety and abuse, well-being, participation and funding and organization of community services. Most of Sally’s work has been co-produced with people with disability and generated from their priorities. Rudi Roose is Associate Professor of Social Work affiliated to the Department of Social Work and Social Pedagogy at Ghent University. His field of interest is the development of critical social work within managerial contexts. He is one of the promotors of the academic workplace on de-institutionalization and editor-in-chief of the European Journal of Social Work. Katherine Runswick-Cole is Professor of Education and Director of Research in the School of Education at the University of Sheffield, UK. Miream Salameh, Bachelor of Fine Art (VCA), works in painting, sculpture, video and performance. Miream studied at the Fine Art Institute in Syria and has participated in many group exhibitions in Syria and overseas. Her artwork addresses identity, displacement, and conflict, especially related to the suffering of the Syrian people, who are being violently oppressed for resisting dictatorship. Miream’s work has been shown in the group exhibitions Syrian Story, solo exhibitions in Space Beaac in 2015 and The Isolation Cell 185,180, in Thirning Villa Gallery in Sydney in 2019. Among her many talents, Miream is a qualified Arabic translator. Daniel Samosh is an Assistant Professor of Employment Relations at Queen’s University in Kingston, Ontario, Canada. His research is focused on the career success and workplace inclusion of persons with disabilities. Previously, he was a Postdoctoral Research Fellow with the Centre for Industrial Relations and Human Resources at the University of Toronto and the Institute for Work and Health. He completed his PhD in Organizational Behaviour at Queen’s University. Alecia Santuzzi is a Professor in the Social-Industrial/Organizational Psychology Program and Director of Research Methodology Services at Northern Illinois University, DeKalb, Illinois, US. She received her PhD in Psychological Sciences from Tulane University and completed postdoctoral training in Quantitative Methods at the University of Illinois, Urbana-Champaign. Dr Santuzzi conducts research on the experience of disability stigma and identity management decisions in the workplace. Her most recent work considers social and individual factors that contribute to a worker’s decision to disclose a disability, and the costs and benefits of those decisions. Jackie Saunders is a Ngarrindjeri, Wirangu, Kokatha and Kaurna painter known for her bold brushstrokes and dynamic use of colour. Describing herself as “the child of a salt water woman and a desert dwelling man” Jackie takes inspiration from the natural world and creates vivid artworks which are imbued with stories. Unearth was created in response to the minerals collection at the South Australian Museum as part of Tutti Arts’ project Reaching Out. “I got inspired by the agate”, says Jackie. “I like the patterns on the rocks and the colours.” Jackie’s author contribution to the book is on the front cover.

Contributors  xxix  

Sophie Savage is an Associate Lecturer in Sociology and Psycho-Social researcher at the University of the West of England in Bristol, UK. The Disability Rights and Robotics project has a diverse co-production team which includes people with lived experience of disability, carers, students and academics in Social Sciences and Robotics; Sophie is a member of this team. Sophie is a disabled academic, who contributes lived experience to teaching, learning and research. Monica C. Schneider, PhD, is Professor of Political Science at Miami University, located in Oxford, Ohio. Her expertise lies in how people form stereotypes based on gender and disability. She also studies the gender gap in political ambition. She is also passionate about the advancement of women and minorities in the academy and improving outcomes for undergraduates. Her research has been published in many journals including Political Psychology, American Politics Research, Electoral Studies, and Politics, Groups, and Identities. Halimu Shauri is a Consultant Sociologist, lecturer and Dean of the School of Humanities and Social Sciences, Pwani University in Kenya. He has over 21 years of teaching experience in Kenya and abroad including Germany as a Visiting Professor at the Technical University of Munich (TUM). He has authored many books, book chapters and journal articles. His recent research collaborations are with the Chair Sociology of Diversity (TUM) in Germany working on issues of disability, livelihood and inclusion, Social Return on Investment of livelihood promotion programmes for persons with disabilities and on One Health. Thaís Becker Henriques Silveira is a Master student in Human Rights at University of São Paulo (USP). Graduated in Law at Federal University of Santa Catarina (UFSC). Researcher at the Study and Research Group on Public Policies for Social Inclusion (GEPPIS/USP), at the Women’s Human Rights Clinic (CDHM/USP) and at the Center for Studies on Disability (NED/UFSC). She lives, works and studies disability and its intersection with gender, based in feminist disability studies. As a woman with disability, she believes in affection as a revolutionary and emancipatory act. Catherine Smith is a Senior Lecturer at the Melbourne Graduate School of Education at the University of Melbourne. Her work draws on sociologies of social justice and practice and philosophies of care to analyse the nexus of politics, policy and practice. With an interest in the effects of disruption, her work has focused on policies and practice of forced migration, equity and education, well-being and resilience, gender identity and new technologies. Its application in teaching, training and research encompasses theories of relationality and reflexivity which drive innovation in teaching and learning across government sectors. Louisa Smith, PhD, is a Senior Lecturer at Deakin University, Australia. Her research interests centre on the relationship between experiences of disability across the life course, complexity, social policy and social change. Her research works across the disciplines of sociology, disability studies and policy studies. Louisa leads the Care Connections stream of the Connections for life with Dementia, Global Challenge Keystone project. Louisa uses creative and arts-based methods to engage people with complex support needs, disabilities and dementia, and those who provide care.

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Tracy Smith-Carrier is an Associate Professor and the Canada Research Chair (Tier 2) in Advancing the UN Sustainable Development Goals in the School of Humanitarian Studies at Royal Roads University. Tracy’s programme of research touches upon many different fields in the social policy arena, including access to social welfare benefits, social assistance receipt, disability support programmes, food in/security, basic income, poverty, and climate justice. Dr Smith-Carrier is currently leading a Participatory Action Research team exploring how to advance knowledge and action on the UN Sustainable Development Goals in Canada and on Vancouver Island, British Columbia. Jennifer Smith-Merry is Professor of Health and Social Policy at the University of Sydney. Jen is Director of the Centre for Disability Research and Policy, a multi-disciplinary centre whose mission is to make life better for people with disability in Australia by translating research to policy and practice. Jen is lead Chief Investigator on multiple grants which aim to evaluate or develop policy and services in disability and mental health. She has skills in evaluation and qualitative methods and works closely with people with lived experience of disability. She has a strong interest in the value of lived experience in informing policy and service design. Michael Ashley Stein is a Professor and the co-Founder and Executive Director of the Harvard Law School Project on Disability, and a Visiting Professor at Harvard Law School since 2005. Considered one of the world’s leading experts on disability law and policy, Dr Stein participated in the drafting of the UN Convention on the Rights of Persons with Disabilities; works with disabled people’s organizations and non-governmental organizations around the world; actively consults with governments on their disability laws and policies; advises a number of UN bodies and national human rights institutions; and has brought landmark disability rights litigation globally. He acknowledges that Harvard University is situated on the traditional and ancestral homelands of the Massachusetts people. Antoni Tsaputra is an accomplished Indonesian scholar and disability rights advocate, who has dedicated his career to promoting disability inclusion in development. He’s currently based at Universitas Negeri Padang as a lecturer and researcher. Antoni earned his PhD from the School of Social Sciences at UNSW Sydney in 2020, where he spent four years conducting research on disability inclusive budgeting. His expertise has been widely recognized and he has been invited to present his research at a number of prestigious international conferences, including the Indonesia Update organized by the ANU Indonesia Project. Despite the challenges he has faced, Antoni’s achievements stand as a testament to his perseverance and dedication to advancing disability rights and promoting a more inclusive society. Lee Tsourvakas is a 16-year-old disabled young woman. Other than advocacy, Lee loves being a girl guide and being around other disabled young people. Lee is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, who works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Francisca Valdebenito-Acosta has developed analyses of public policies related to disability and public health in Chile, and has lived the experience of disability since birth. As Research Director at Symbolon Consulting, she has studied the housing, health and subjective

Contributors  xxxi well-being gaps of people with disabilities for government and academia. She is Professor of Capabilities Approach at the Universidad de Chile, and currently a Fellow at the Center for Inclusive Policy 2022‒2023 which seeks to strengthen the implementation of CRPD especially in low and middle-income countries. Oriol Valles Codina is a Research Fellow in Innovation Policy at the UCL Institute for Innovation and Public Purpose. Catherine Kramarczuk Voulgarides is Assistant Professor of Special Education at the City University of New York – Hunter College. She received her PhD from New York University in Sociology of Education. Her scholarship examines how notions of equity, access, and opportunity are constructed in policy and law and enacted in educational practice. Her first book (Teachers College Press) in 2018 won the Outstanding Publication Award in 2020 from the Disability and Society Section of the American Sociological Association. Elisabeth Wacker conducts research on social inequality, diversity and difference, especially in the case of disabilities and disadvantage in society. One focus is on the change in care systems (prevention, rehabilitation) and social policy (inclusion, participation, ability mainstreaming). On behalf of the Federal Government of Germany, she is the Chairperson of the Scientific Advisory Board for the Reports on Participation Opportunities and Livelihoods of People with Disabilities. She has held Chairs at the Technical University of Dortmund and the Technical University of Munich, two Max Planck Fellowships as well as Visiting Professorships in Austria and Taiwan. Kuo-yu (Lisa) Wang is a Taiwanese social worker, policy maker, advocate and scholar. She has a long history of policy-related research and advocacy, and became part of the first generation of disability researchers to combine lived experience, scholarship and advocacy. Dr Wang’s work is focused on moving from a welfare focus towards rights protection, and into concrete policy and practice in Taiwan. Robbie Francis Watene is a disability advocate, scholar and leader from Aotearoa New Zealand. Born with a physical disability, Robbie has been an expert advisor to the New Zealand government on various strategies and policies and is a senior researcher at the Donald Beasley Institute, where she is Project Lead for the Disabled Person-Led Monitoring of the United Nations Convention on the Rights of Persons with Disabilities, amongst other disability rights research projects. Joanne Watson, PhD, is a Senior Lecturer and Course Director of Deakin’s postgraduate disability and inclusion program. Having worked for thirty years as a Speech Pathologist, Jo’s research explores how the UNCRPD impacts on capacity to protect and promote human rights of people with complex communication and support needs. Her current research includes supporting people with complex communication and support needs to live self-determined lives through decision-making mechanisms and individualized planning. Jo has practised, taught and engaged in research in Hong Kong, China, Australia, Ireland, Iceland and USA and is a director on the Board of Loom Arts and Management, a not for profit management agency for artists with disability.

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Yvonne Wechuli is a Research Associate of the Just and sustainable transformation graduate program at the University of Kassel, Germany. She holds a Master’s degree in rehabilitation sciences majoring in structures of the rehabilitation system and pursues a PhD on the theorization of emotions and affect in disability studies. Her other research areas include postcolonial disability studies, inclusive healthcare and participatory research. Since 2021, she has worked in the department of disability, inclusion and social participation, which has a strong focus on human rights, where she has taught on topics like livelihoods of persons with disabilities in the Global South or community-oriented independent living. Ayah Wehbe is a social researcher and community advocate. Her PhD topic at UNSW Sydney focuses on the identity and belonging of Muslim women in Australia with hearing loss. She shares her own experiences as an Australian Muslim woman with hearing loss through a social media platform called Silent Signs. Ruth Wells is a Research Fellow in the Trauma and Mental Health Unit, School of Psychiatry, UNSW, and a Clinical Psychology Registrar. Their research focuses on understanding the social and cultural processes that shape individual and community responses to trauma, conflict and displacement. They conduct participatory research with displaced communities in Australia, Turkey, Jordan, Iraq and Bangladesh with a focus on how lack of access to human rights impacts on social participation and well-being. They are on the editorial board of The Activist Practitioner, a publication for mental health practitioners which seeks to bring critical feminist and decolonizing frameworks into everyday clinical practice. Raelene West has a long history in disability advocacy. She has a PhD in Sociology and has worked for several years on various disability and aged care research studies. She is currently working as a Social Researcher at the Melbourne Disability Institute, University of Melbourne. She has publications in the areas of ableism, individualized funding models, marketization of service delivery, use of technology in service delivery and human rights. Sally Whitney is a researcher affiliated to the iHuman Research Institute at the University of Sheffield, UK. Erin Wilson is a Professor and currently the Uniting Kildonan Chair in Community Services Innovation at the Centre for Social Impact housed at Swinburne University’s Faculty of Business and Law. Professor Wilson is a leading researcher and thinker in the field of participatory social change. Seeking to influence policy and practice, her research career has focused on research that “makes a difference” through the participation of those most affected. Her work is underpinned by the design of inclusive and participatory research and evaluation methods that enable a full diversity of participation, including children and adults with diverse disabilities. Meng Ee Wong is Associate Professor at the Psychology and Child & Human Development Academic Group at the National Institute of Education, Nanyang Technological University. He teaches special education in the Master of Education (Special Education), Diploma in Special Education and Advanced Diploma in Special Education programmes.  His research interests include special and inclusive education, disability studies, assistive technology, support for students with visual impairments and teacher education. Outside his academic

Contributors  xxxiii work, Meng Ee also serves on a number of non-profit organizations including SG Enable, iC2PrepHouse and the Goh Chok Tong Enable Fund Evaluation Panel. Daryl W.J. Yang is a lawyer and Fulbright scholar who recently obtained an LLM with a specialization in public interest and social justice at University of California, Berkeley’s School of Law. He holds an LLB (First Class Honours) (National University of Singapore) and a BA (Honours) (Yale-NUS College). Daryl co-authored the Disabled People’s Association Singapore’s inaugural parallel report to the UN CRPD Committee as well as its report to the Third Cycle of Singapore’s Universal Periodic Review. Daryl’s research focuses on law and social movements, disability legal studies and criminal justice. He has been published in edited volumes and law journals including the Australian Feminist Law Journal and the Singapore Law Review. Eun-Ju Yoo is a Research Fellow in Employment Development Institutions at the Korea Employment Agency for Persons with Disabilities under the Ministry of Employment and Labor. She has PhD in public administration. Her research interests include disability employment policy and policy design, policy tool transfer from sheltered workshop to integrated employment. Mac Zamani is a 19-year-old queer and disabled youth advocate, in his final year of school. Outside of school he spends his spare time working alongside organizations to improve accessibility, inclusivity and outcomes for both LGBTQIA+ and disabled young people. Mac is a member of the YDAS’s COVID-19 Working Group, who worked collectively on their narrative pieces with other group members. The Youth Disability Advocacy Service (YDAS) is an organization in Victoria, Australia, that works directly with young people with disability between the ages of 12 and 25 to ensure their human rights are being met. Anica Zeyen is a Senior Lecturer in Entrepreneurship and Sustainability at the School of Business and Management at Royal Holloway University of London (UK). She obtained her PhD from Leuphana University Lueneburg (Germany) in 2014. Anica leads the research cluster “Disability, wellbeing and sustainable inclusion”. Her research focuses on improving societal inclusion of disabled people with a particular focus on economic participation through entrepreneurship and work. Anica engages in international research on disability. She is a disability advocate and volunteers as speaker, fundraiser and campaigner for multiple UK-based disabled people’s organizations. Honglu Zhu works at Chongqing Three Gorges Water Conservancy and Electric Power School. Her research is about youth psychology. Kuansong Victor Zhuang is Fung Global Fellow at the Princeton Institute of International and Regional Studies, Princeton University, and International Postdoctoral Scholar at the Wee Kim Wee School of Communication and Information, Nanyang Technological University. His research lies at the intersections of communications, media, and cultural studies, and disability studies, especially as it pertains to inclusion and the workings of technology. He hopes to use his research to contribute to current debates about how inclusion happens both in Singapore and around the world. Tessa-May Zirnsak is a PhD candidate and Consumer Academic at the Department of Politics, Media and Philosophy, La Trobe University, Australia.

Acknowledgements

Many people contributed to the development of this handbook, and we thank them for their generous and thoughtful involvement in bringing the book to life. The four section leads provided great depth and insight into both the process and the outcome of the chapters in each of the four sections. We extend our sincere thanks to Professor Sophie Mitra, Dr Yvette Maker, Professor Jennifer Smith-Merry, and Dr Daniel Mont. In their roles as section leads, they not only reviewed draft chapters and provided feedback to the authors, but also facilitated collaborative discussions we held during the writing stage of the book with the authors. These opened new lines of inquiry and deepened thinking for all of us. Finally, the critical engagement of all four readers as the sections were finalized and the narratives included provided an additional level of editorial rigour. The book is much stronger for their involvement, and we are so pleased they are woven into its structure. Thank you to the contributing authors for joining with us in a community of practice approach to developing the handbook. We very much enjoyed the opportunity to meet most of the authors through the series of focused conversations where we discussed concepts core to the interests of the book. In so doing, the diverse nature of the contributing authors was underlined. In terms of location, gender, disability, age, and disciplinary approach, we are an eclectic group – very much in keeping with our approach to reflecting the diversity and breadth of disability policy. The strength in this diversity is emphasized by the involvement of the narrators who bring their personal experiences of disability and policy into this academic work. We thank the people who shared parts of their own experiences with readers of the handbook in order to illustrate how policy affects life. Personal narratives ask a lot of people, and we are grateful for people’s willingness to share their knowledge and insights with us. The genesis of this idea came from our late colleague and friend Jaimsie Speeding, and we remember her contribution to the field here with respect. Research assistance was provided throughout the handbook development by Dr Jan Idle, Bella Bauer, Olivia Geehan and Nicole Hrenchir. Thank you to each of them for their persistence, rigour, and good humour. Finally, thank you to our families for their forbearance, particularly during the evenings, early mornings, and weekends as we brought the book together.

COVER ART Unearth, Jackie Saunders Jackie Saunders is a Ngarrindjeri, Wirangu, Kokatha and Kaurna painter known for her bold brushstrokes and dynamic use of colour. Describing herself as “the child of a salt water woman and a desert dwelling man” Jackie takes inspiration from the natural world and creates vivid artworks which are imbued with stories. Unearth was created in response to the minerals xxxiv

Acknowledgements  xxxv collection at the South Australian Museum as part of Tutti Arts’ project Reaching Out. “I got inspired by the agate”, says Jackie. “I like the patterns on the rocks and the colours.”

Introduction to disability policy through a human rights lens Karen R. Fisher and Sally Robinson

This book considers the impact on policy of understanding disability through a human rights framework. It argues that the current language, law and concepts about human rights are changing the way that policies are framed and implemented. The book considers how a human rights understanding of disability interacts with and influences welfare, health and economic approaches to disability. Historically, these other approaches dominated policy about people with disability and they remain influential today. These older approaches, however, are now also overlayed with a competing or complementary human rights framework, which challenges some of the historic assumptions about what disability is and the obligations of policy (Shakespeare, 2013). The extent of the interaction and influence of human rights on the other approaches to policy varies by place, time and context. In this introduction, we describe the diverse conceptual approaches to disability policy, which sometimes operate in conflict or to exclude other approaches. We make the argument for critiquing disability policy through the lens of human rights, which is the aim of the chapters in this book. This collective contribution offers a global perspective of disability policy at particular points in time and place, informed by the expertise of people with disability.

DISABILITY POLICY The book focuses on policies that are close to the lives of people with disability, including social services, housing, health, employment, education and income support (Dean, 2012). Some of these policies affect all people and some are specialist policies targeted at or intended to benefit people with disability. In this book, we call them disability policies, although of course they are also broader than that. ‘What is policy’ is a discipline in itself. The book takes the perspective of people with disability who experience policy as a process (McIntosh & Wright, 2019). The policy process includes the negotiation and writing of law, policy, procedure and practice. More immediate to the lives of people though, policy process also includes the implementation, enforcement and practice of policy. The book embraces the critical understanding of policy as the social relations between people engaged in the enactment of policy as a process. It focuses on state policy, with the inclusive notion that the implementation of state policy is often by non-state actors, including the market and community. Exploring how disability policy is enacted and experienced can address the uncontested, often ableist, assumptions that place ‘normativity’ at the centre of policy process (Van Aswegen, 2020). The exploration can challenge a binary policy approach that positions disability as other, outside and not within. How policy is written, and how problems are rep1

2  Research handbook on disability policy resented within policy, impacts on what is considered problematic or a policy problem. The problem representation in turn also shapes responses to addressing these issues (Bacchi, 2009). Disability policy is not only state-based but also involves global and international organisations. The United Nations, World Health Organization and the Organisation for Economic Co-operation and Development exert influence over disability policy (Schuster & Kolleck, 2021). The adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006 (www​.un​.org/​development/​desa/​disabilities/​convention​-on​ -the​-rights​-of​-persons​-with​-disabilities​.html) was a global watershed for reframing disability policy in a human rights framework. International organisations and United Nations agencies monitor and oblige signatories (governments) to the Convention to fulfil their obligations within national and local disability policy (Katsui & Chalklen, 2020). Disability policy has been influenced on a global scale by how disability has been conceptualised. Social and medical models of disability are the dominant lenses through which policy has been viewed. These lenses are increasingly influenced by global and human rights approaches. The medical model understands disability as an individual condition that requires care and welfare to ‘assimilate to the social norm’, and where interventions are about remedying lack (Katsui & Chalklen, 2020, p. 223). The social model views disability as a result of the interaction between people with impairments and a social world rife with barriers and limitations that constrain full participation. The focus of change is on social structures and systems to enable people with impairments to participate on an equal basis with others (Oliver, 2013). In the last decade, rights-based approaches have become more prevalent to understand the relationship between people with disability and the state. Human rights are influencing policy in ways that ‘disability policy is consistent with three dimensions: social protection, labour-market integration and civil rights’ (Tschanz & Staub, 2017, p. 1201). The impact of this change affects the positioning of people with disability as active citizens with the same entitlements as their peers.

HUMAN RIGHTS Human rights is a useful lens to critique disability policy because it encompasses both conceptual and governmental understandings of the relationship between people and states. Sociological and philosophical concepts of human rights view rights as universal, common to all persons. From these disciplines, a person’s human rights are understood as interdependent with the rights of other people, within the social context of their society. These concepts of rights interweave with related social frames of justice and distribution (Dean, 2008). Equally, from a policy or legal perspective the concepts and language of human rights speak to the obligations of the state and the responsibilities of citizens – when the state is obliged to intervene to promote or protect the rights of some people disadvantaged by the actions of others. Both the conceptual and legal application of a human rights frame can be understood as consistent with social perspectives, the social model and social relations of disability, when read with this contemporary frame of interdependence and within a social context (Lawson & Beckett, 2020). Human dignity is central to a human rights model of disability where all people are entitled to ‘equal recognition as a person before the law’ (Degener, 2017, p. 35). Human rights are unconditional, and impairment does not preclude or hinder a person’s human rights. Human

Introduction to disability policy through a human rights lens  3 rights discourse is framed around positive and negative rights, which in combination are duties to refrain, duties to protect and duties to provide (Barclay, 2019). Positive rights identify what societies must do to ensure resources and opportunities are provided for people to enjoy their rights. Negative rights are those that focus on stopping barriers and obstacles to a person enjoying their rights, such as the prohibition of discrimination (Bickenbach, 2020). Negative rights, such as anti-discrimination, are a partial solution to the activation of human rights and must be tied to positive rights. When framed in law, the placing of human rights at the centre of policy sets normative expectations of the relation between people and the state. In a particular context, these standards may be minimum standards aimed at ‘avoiding the terrible rather than achieving the best’ (Nickel in Barclay, 2019, p. 81). In other contexts, they are aspirational, with rights as yet unrealised. In relation to disability policy, they locate impairment as a ‘form of human diversity without undermining the insights of the social model and reaffirm individuals as rights-bearers’ (Yilmaz, 2020, p. 762). The UNCRPD lays out two positive rights of critical importance to people with disability, who have long been denied their human rights. These are accessibility (Article 9), the right to ‘live independently and participate fully in all aspects of life’, and reasonable accommodation (defined in Article 2), which ensures actions are taken to ensure people with disability ‘exercise on an equal basis with others all human rights and fundamental freedoms’ (United Nations, 2006, pp. 9, 4). Critically it is important for governments to adopt rights and have provisions to support rights (Heymann et al., 2020). The notion of reasonable accommodation in the CRPD is central to disability policy, where participation, in all aspects of life, is dependent upon the state meeting its obligations of accessibility and accommodation. Bickenbach (2020), in discussing the right to work in Article 27, notes that this right can only be put into operation where states fulfil the ‘reasonable accommodation’ clause. This book makes the argument that policy that affects people with disability can be informed by critiques through the lens of human rights, irrespective of simultaneous welfare, health and economics policy drivers.

WELFARE A human rights lens on welfare is a contested field of disability policy. Decisions about approaches to welfare are shaped by how we understand disability and also, importantly, the priorities and perspectives of political ideologies of the state, and notions of equality and rights. Historically, disability-specific policy emerged out of welfare concepts, from a concern for people who were poor and destitute. The roots of this framing stemmed from charitable acts of the community, religious bodies, and eventually the state. It emphasised the dependence and passivity of people with disability, and the legacy of that history remains in much policy. More recent welfare approaches are informed by human rights focus on the agency, interdependence and social context of people with disability. These recent approaches emphasise entitlement to welfare support for equal access and participation in society (Dean, 2012). Rights-based approaches to welfare consider whether the goal is equality of opportunity or equality of outcome where people with disability enjoy the same rights as other people. Ayling (2018) identifies the keys to the latter as human dignity, enablement and social justice.

4  Research handbook on disability policy Conceptual understandings of disability continue to shape policies, which are inextricably and increasingly connected to state, economic and political ideology. Just as the social model of disability brought about welfare reform to accommodate and provide financial support and care (Schuster & Kolleck, 2021), political perspectives have also shaped welfare policy. Political ideology was evident in the 1990s when welfare reforms were driven by austerity and neoliberalist agendas and shrinking welfare expenditure. States focused in the first instance on a person’s dis/ability, via ‘individualistic interventions’ and were dominated by assumptions of normativity, ‘tropes of personal independence and self-sufficiency’ (Van Aswegen, 2020, pp. 437, 439). Scholars have noted with some concern that some countries have reorientated away from accommodating the needs of people with disability through financial support and care, and toward facilitating participation in ‘work-fare’ programmes for ‘subsistence benefits’ (Beckwith, 2016, p. 147). In some Latin American states, conditional cash transfer programmes were introduced, although ‘beneficiaries remained poor, vulnerable and insecure’ (Grugel & Riggirozzi, 2018, p. 532). Some European countries have maintained a balance within disability policy across the domains of civil rights, social protection and labour market integration, in their attempts to support the rights and equality of people with disability. Similarly, some countries in Latin America have embarked on resetting welfare strategies in a post-neoliberalist approach, implementing social policies ‘as a source of protection and, potentially, a route to social and economic inclusion’ (Grugel & Riggirozzi, 2018, p. 529). Disability movements have had a tendency to avoid or dismiss claims for ‘social rights’ in favour of a focus on civil rights in earlier movements, because social rights were so closely related to disempowering welfarist or charity approaches (Degener, 2016). Feminist ethics of care challenged this dichotomy by emphasising the interdependence and normalisation of care and support needs and responsibilities (Williams, 2018). The theory was criticised for its focus on people providing care and support. The UNCRPD has more recently offered an opportunity to revisit the social, economic and cultural rights of people with disability in a manner aligned with a social or human rights model. Bringing together elements of ethics of care and human rights offers a platform to pursue social rights for all parties in care and support relationships (Maker, 2022).

HEALTH Another dominant framing of policy is medical understandings of disability, which are individually focused and seek to identify, fix or prevent impairment or difference in people’s bodies (Hogan, 2019). The impact of this frame is a focus on the individual to adapt and accommodate to the majority environment. Historically, medical paradigms and diagnostic criteria have dominated disability policy frameworks and their operation, but, paradoxically, neglect of the health needs of people with disability was and still is a common experience. Attempts to incorporate a medical understanding with the broader social models of disability have resulted in categorisations such as the International Classification of Functioning, Disability and Health (ICF), applied at the person and population level (Chan et al., 2009). The ICF includes body functions, activities and participation, and the environment. The ICF approach, or parts of the ICF model, remains the dominant framework for most Global South disability policy (Mitra & Shakespeare, 2019). Rights and policies about health, wellbeing and

Introduction to disability policy through a human rights lens  5 access to health services, shared with all people, are not dependent on a medical understanding of disability. Despite the presence of critical discussions of disability, intersectionality and ableism influencing the medical model (Shakespeare, 2013), negative attitudes toward people with disability and associated stigma remain powerful. Equity in access to adequate and appropriate healthcare is dependent on addressing and overcoming existing obstacles. These include environmental barriers such as those present in the built environment, infrastructure and technology; social barriers, gender inequality, discrimination, stigma and education; healthcare barriers, illustrated in practice, procedures, and access including availability and costs; and political barriers, such as rights, protections and empowerment (Rembis & Djaya, 2020, p. 105). The right to health is inseparable from rights to housing, healthcare and social security. The negative right to non-discrimination is central to the focus of rights to health and disability, and concerns aspects of ‘non-discrimination and equal opportunities with reference to access to healthcare structures and the relationship between poverty and disability’ (Pavone, 2017, p. 476). Pavone notes that 80 per cent of people with disability live in developing or least developing countries and that rights to health include state obligations and duty of guarantee – of non-discrimination; duty to protect – again this is about non-discrimination and issues of organ transplant or refusal to provide care due to disability status; duty of fulfilment – availability and quality of health service; duty of prevention – in which the condition of disability should not prevent health insurance assistance, or access to life sustaining of life saving practices. Looking to generate more equitable public health, Berghs et al. (2019) argue a clinical evidence approach fails to address the needs, values and preferences of people with disability. Drawing the connection between medicine, public health and policy making, they call for rethinking the hierarchies of evidence-based clinical medicine and its subsequent influence on political decision making. They outline the shortcomings of the medical model, as a deficit model, and suggest evidence with a focus on ‘how to flourish with disability [that] would provide those answers’ (italics in original) and reconceptualise public health interventions, which will not only lead to greater equality but also ensure rights to health and wellbeing (Berghs et al., 2019, p. 5).

ECONOMIC INCLUSION The economic framing of disability positions people with disability as labour market participants and consumers, urging the activation and participation of people in markets. Historically, this framing complemented the medical and welfare models, where bodily difference could be understood as the reason for exclusion from the labour market or the reason to change the body to conform, and exclusion from the labour market meant reliance on a welfare state for income support (Fraser, 1994). Feminist and other critical economic approaches that engage with justice and rights discourses emphasise broader conceptions of participation, contribution and interdependence of people, including people with disability (Danermark & Gellerstedt, 2004). In these approaches economic inclusion acknowledges the obligation of the state to redistribute income and wealth so that all people have access to adequate economic opportunities for wellbeing and partici-

6  Research handbook on disability policy pation. Policy choices about forms of income support have implications for avoiding poverty, exclusion and violence. Economic inclusion in this sense has wider implications for disability policy than just labour and consumer participation. The implications extend to accessibility of social, digital and physical infrastructure through universal design and technology and accommodations. The economic inclusion implications of policy are evident across the life course from inclusive education to entrepreneurship (Thoresen et al., 2018). Economics is often at the heart of promoting and crafting inclusive policies. Economics provides essential information for developing, implementing, monitoring and evaluating policies but when divorced from a human rights perspective it can lead to unintended consequences that undermine inclusion. Economics considerations come into play when developing inclusive policies. Globally, data shows that disability is linked to lower earnings and poverty (Palmer, 2011). It also has been shown to impose extra costs on families, both in terms of expenditures on disability-specific items, such as assistive devices, and on general items for which they often have a higher need, such as healthcare. Estimating these extra costs is challenging – especially since recent studies show how much they vary. The wide variance in the nature and scale of those costs also creates challenges for how to incorporate them into the design and delivery of social protection programmes aimed at promoting participation. Policy approaches that address the right to work have been understood as both a negative right to non-discrimination, and the positive right to employment facilitated through obligations about accessibility and accommodation (Bickenbach, 2020). Balancing these rights through policy interventions is complex. The challenge is to develop and implement policies that create ‘greater accessibility and support in the workplace’ and the market conditions that will enable these rights to be practised (Waddington et al., 2016, p. 73). Participation in employment is viewed in many countries as a marker of adulthood, autonomy and independence, with the resulting financial and material advantages (Gayle-Geddes, 2015). Access to employment has ‘material and psychological well-being’ benefits and implications for social rights, and is a route to social and economic inclusion (Bickenbach, 2020, p. 332). Limitations in access to employment, discrimination and barriers for people with disability impact across their life domains. The multiple and sometimes contradictory policies often operate at the same time. In some countries the right to employment has led to conditionality on access to welfare, and disability policy has repositioned itself away from ‘public responsibility for social welfare’ (Van Aswegen, 2020, p. 437). Importantly, and with some effect, employment activation programmes in welfare policies have led to two scenarios. On the one hand these have brought about challenges to ‘embedded institutional discrimination’, and the development of active labour market policies to include people with disability, and on the other they have threatened ‘the grounds of legitimacy for disability benefits’ (Yilmaz, 2020, p. 764). The former addresses issues of non-discrimination, accessibility and accommodation and the latter sees people with disability through the narrow prism of their labour market potential and the ultimate ‘economic success of the country’ (Katsui & Chalklen, 2020, p. 214). The combination of approaches to disability policy with economic views in mind balances the three domains of civil rights, social protection and labour market integration.

Introduction to disability policy through a human rights lens  7

POLICY CONTEXT All three welfare, health and economic frames resonate with historical and current disability policy drivers in the Global South and Global North (Shakespeare, 2013). The immediate focus on physical and material survival of people with disability has often trumped other rights, sometimes necessarily. However, human rights even in these extreme circumstances, whether driven by austerity or disaster, can inform competing policy drivers. Is policy justifiable that a child injured and seemingly orphaned in a disaster be institutionalised; or that a homeless young woman with cognitive impairment subject to repeated sexual assault be sterilised? With a human rights framing, the value base for disability policy that focuses on the person within their social context is clear. The frame positions people with disability alongside and relative to other people in relation to the state in their time and place. So in answer to the stark questions above, as other children in a disaster are placed in family-based care, children with disability can be respected in the same way; and as other young women are protected from sexual assault, so too homeless young women with cognitive impairment have that right. It is for these reasons that this book applies a human rights frame to understand the quality and implications of disability policies, whether intentionally or historically driven by human rights, welfare, health or economic values. It seeks to understand when policies are consistent with a rights approach; and when welfare, health and economic approaches incorporate a human rights understanding of disability. The chapters focus on contemporary empirical experiences of policy by people with disability. Our goal is to inform future policy, to ultimately bring the lessons of change to further the rights of people with disability in whatever their social context.

BOOK STRUCTURE The book has four parts. Parts I–IV focus on the four complementary or competing approaches to policy: human rights, welfare, health and economic inclusion. Each part includes an introductory section and chapters that cover theoretical and topical issues. The range of international authors consider policy process, outcomes and impact; Global South/North context; and contemporary issues including globalisation, pandemics and technology. Personal narratives from people with disability about their policy experiences are included in each part in the form of short essays, poems and reflections. These are integrated into the more traditional chapters. These narratives set the tone for understanding the effects of normative approaches to policy and highlight the human rights experiences to which the academic chapters respond. They emphasise valuable perspectives of people with disability whose experiences might otherwise not feature so directly in a book about policy and its effects (Clear, 2000). The four parts were guided by the editorial advisors (Sophie Mitra, Yvette Maker, Jennifer Smith-Merry and Daniel Mont), who advised on the conceptual framing of their part and facilitated reflective practice to increase quality and interaction between chapters and enable authors to meet and collaborate. All chapters were subject to double peer review.

8  Research handbook on disability policy

LANGUAGE Language to describe the experience of disability varies by place and time. The editorial position taken in this book is to use the author’s preferred term in their chapter. This preference means that people are referred to in different ways depending on the context of the chapter. The editors are Australian, where the current preferred term is people with disability. Other common terms in the book are disabled people, people with disabilities and persons with disabilities.

CONCLUSION Now is an important time to explore the contribution of human rights to disability policy. In the years since the ratification of the UNCRPD, great advances have been made not only in articulating the rights of people with disability, but also in progressing human rights in policy and practice. However, as the contributors of this book show well, this is a very uneven experience, and we have a great distance still to travel. Our aim with this book is to understand disability policy in a global context from the perspective of people with disability. The international contributions from Global South and Global North contexts bring a rich and diverse analysis of ways that disability policy affects the lives of people with disability across human rights, welfare, health and economic domains. Of course, people’s lives are not so easily circumscribed, and many of the contributions to the book reveal the interconnected nature of human rights and policy in the lives of people with disability. Nowhere is this more alive than in the narratives of people themselves. Interwoven throughout the book, these first-person accounts show the multiple (and sometimes insidious) ways that policy shapes life, but also how life can shape policy if we pay attention.

REFERENCES Ayling, P. (2018). Diversity, equality and rights. In A. Boggis (Ed.), Dis/abled Childhoods? A Transdisciplinary Approach (pp. 37–55). Springer International Publishing. https://doi.org/10.1007/ 978-3-319-65175-0_3 ​ ​ ​ ​ ​ Bacchi, C. L. (2009). Analysing Policy: What’s the Problem Represented to Be? Pearson Australia. Barclay, L. (2019). Disability with Dignity: Justice, Human Rights and Equal Status. Routledge. Beckwith, R.-M. (2016). Disability Servitude From Peonage to Poverty. Palgrave Macmillan US. Berghs, M., Atkin, K., Hatton, C., & Thomas, C. (2019). Rights to social determinants of flourishing? A paradigm for disability and public health research and policy. BMC Public Health, 19(1), 997. ​ ​ ​ ​ ​ ​ ​ ​ https://doi.org/10.1186/s12889-019-7334-8 Bickenbach, J. (2020). A human rights perspective on work participation. In U. Bültmann & J. Siegrist (Eds.), Handbook of Disability, Work and Health (pp. 331–345). Springer International Publishing. https://doi.org/10.1007/978-3-030-24334-0_17 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Chan, F., Gelman, J. S., Ditchman, N., Kim, J. H., & Chiu, C. Y. (2009). The World Health Organization ICF model as a conceptual framework of disability. In F. Chan, E. Da Silva Cardoso, & J. A. Chronister (Eds.), Understanding Psychosocial Adjustment to Chronic Illness and Disability: A Handbook for Evidence-Based Practitioners in Rehabilitation (pp. 23–50). Springer. Clear, M. (Ed.) (2000) Promises, Promises: Disability and Terms of Inclusion. Federation Press. Danermark, B., & Gellerstedt, L. C. (2004). Social justice: Redistribution and recognition: A non‐ reductionist perspective on disability. Disability & Society, 19(4), 339–353.

Introduction to disability policy through a human rights lens  9 Dean, H. (2008). Social policy and human rights: Re-thinking the engagement. Social Policy and Society, 7(1), 1–12. doi:10.1017/S147474640700396X Dean, H. (2012). Social Policy (2nd edn). Polity Press. Degener, T. (2016). Disability in a human rights context. Laws, 5, 35. https://doi.org/10.3390/ ​ ​ ​ ​ ​ laws5030035 Degener, T. (2017). A human rights model of disability. In P. D. Blanck & E. Flynn (Eds.), Routledge Handbook of Disability Law and Human Rights (pp. 31–49). Routledge. https://ebookcentral-proquest -com.ezproxy.flinders.edu.au/lib/flinders/reader.action?docID=4586232&ppg=4 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Fraser, N. (1994). After the family wage: Gender equity and the welfare state. Political Theory, 22(4), 591–618. Gayle-Geddes, A. (2015). Disability and Inequality Socioeconomic Imperatives and Public Policy in Jamaica. Palgrave Macmillan US. Grugel, J., & Riggirozzi, P. (2018). New directions in welfare: Rights-based social policies in post-neoliberal Latin America. Third World Quarterly, 39(3), 527–543. https://doi.org/10.1080/ ​ ​ ​ ​ ​ 01436597.2017.1392084 ​ ​ Heymann, J., Sprague, A., & Raub, A. (2020). Advancing Equality: How Constitutional Rights can Make a Difference Worldwide. University of California Press. Hogan, A. J. (2019). Social and medical models of disability and mental health: Evolution and renewal. CMAJ: Canadian Medical Association Journal, 191(1), E16–E18. doi.org/10.1503/cmaj ​ ​ ​ ​ ​ .181008 Katsui, H., & Chalklen, S. (2020). Disability, Globalization and Human Rights. Routledge. Lawson, A., & Beckett, A. E. (2020). The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights. doi:10.1080/13642987.2020.17835 33 Maker, Y. (2022). Care and Support Rights After Neoliberalism: Balancing Competing Claims Through Policy and Law. Cambridge University Press. https://doi.org/10.1017/9781108750479 ​ ​ ​ ​ ​ McIntosh, I., & Wright, S. (2019). Exploring what the notion of ‘lived experience’ offers for social policy analysis. Journal of Social Policy, 48(3), 449–467. doi:10.1017/S0047279418000570 Mitra, S., & Shakespeare, T. (2019). Remodeling the ICF. Disability and Health Journal, 12, 337–339. Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. doi:10.1080/09687599.2013.818773 Palmer, M. (2011). Disability and poverty: A conceptual review. Journal of Disability Policy Studies, 21(4), 210–218. https://doi.org/10.1177/1044207310389333 ​ ​ ​ ​ ​ Pavone, I. R. (2017). Article 25 [Health]. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A Commentary (pp. 471–485). Springer International Publishing. Rembis, M., & Djaya, H. P. (2020). Gender, disability, and access to health care in Indonesia: Perspectives from global disability studies. In K. H. Smith & P. K. Ram (Eds.), Transforming Global Health: Interdisciplinary Challenges, Perspectives, and Strategies (pp. 97–111). Springer International Publishing. https://doi.org/10.1007/978-3-030-32112-3_7 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Schuster, J., & Kolleck, N. (2021). Disability as a ‘new’ global social theme: The role of international organizations in an expanding global policy field. In K. Martens, D. Niemann, & A. Kaasch (Eds.), International Organizations in Global Social Governance (pp. 207–230). Springer International Publishing. https://doi.org/10.1007/978-3-030-65439-9_9 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Shakespeare, T. (2013). Disability Rights and Wrongs Revisited. Taylor & Francis Group. Thoresen, S. H., Thomson, A., Jackson, R., & Cocks, E. (2018). Meaningful social and economic inclusion through small business enterprise models of employment for adults with intellectual disability. Journal of Vocational Rehabilitation, 49(2), 161–172. Tschanz, C., & Staub, I. (2017). Disability-policy models in European welfare regimes: Comparing the distribution of social protection, labour-market integration and civil rights. Disability & Society, 32(8), 1199–1215. https://doi.org/10.1080/09687599.2017.1344826 ​ ​ ​ ​ ​ ​ ​ United Nations Convention of the Rights of Persons with Disability and Optional Protocol (UNCRPD). (2006). https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​

10  Research handbook on disability policy Van Aswegen, J. (2020). Disabling discourses and charitable model of disability: Labour market activation for people with disabilities, Ireland – a critical policy analysis. Disability & Society, 35(3), 435–459. https://doi.org/10.1080/09687599.2019.1634519 ​ ​ ​ ​ ​ ​ ​ Waddington, L., Priestley, M., & Yalcin, B. (2016). Equality of opportunity in employment: Disability rights and active labour market policies. In P. Blanck & E. Flynn (Eds.), Routledge Handbook of Disability Law and Human Rights (pp.  72–87). Routledge. http://ebookcentral.proquest.com/lib/ ​ ​ ​ ​ ​ flinders/detail.action?docID=4586232 ​ ​ ​ ​ ​ Williams, F. (2018). Care: Intersections of scales, inequalities and crises. Current Sociology, 66(4), 547–561. doi:10.1177/0011392118765206 Yilmaz, V. (2020). An examination of disability and employment policy in Turkey through the perspectives of disability non-governmental organisations and policy-makers. Disability & Society, 35(5), 760–782. https://doi.org/10.1080/09687599.2019.1649124 ​ ​ ​ ​ ​ ​ ​

PART I HUMAN RIGHTS Sophie Mitra and Sally Robinson

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the 2030 Development Agenda for Sustainable Development affirm the commitment of the international community to promote the inclusion of persons with disabilities in society. The CRPD recognizes “that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (Preamble, paragraph (e)).  The purpose of the UNCRPD “is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (United Nations, 2006). As of June 2021, it has been ratified by 182 countries. There are two broad components to the implementation of the UNCRPD. The first consists in adopting laws and policies in line with the provisions of the UNCRPD and the second includes non-legal strategies towards advocacy and social change. Both aim to lead to the full participation of persons with disabilities in society by mainstreaming disability in development strategies. The UNCRPD recognizes that persons with disabilities include those “who have long-term physical, mental, intellectual or sensory impairments” and who encounter barriers which hinder their “full and effective participation in society on an equal basis with others” (Preamble, recital (e) and Article 1). The 2030 Agenda for Sustainable Development is inclusive of disability and of persons with disabilities. Its Sustainable Development Goals (SDGs) consider disability as a cross-cutting issue and include it explicitly in five SDGs, including education, growth and employment, inequality, accessibility of human settlements, and data, monitoring and accountability. The SDGs identify persons with disabilities as a disadvantaged group. These developments around the UNCRPD ratification and disability in the 2030 Agenda reflect the human rights approach to disability. Yet, disability through a human rights approach continues to receive very little attention in the field of policy. While there has been research on social protection policies targeting individuals with disability and their families, limited 11

12  Research handbook on disability policy work has considered disability in other areas of policy such as education, health, healthcare, employment, transportation, culture and more. Realizing the rights of persons with disabilities requires policies that are based on concepts that are in line with a human rights approach to disability, and reflect various aspects of the lives of persons with disabilities and their diversity. The COVID-19 pandemic may have reversed hard-won progress in implementing the UNCRPD and the 2030 Agenda by affecting the health, community supports, information and communication technologies, education, employment and poverty status of persons with disabilities.  Guided by the human rights perspective, this section of the edited volume aims to bring disability more prominently into the policy discourse and to facilitate the generation of new empirical evidence and debates about disability-inclusive policies globally.

THE HUMAN RIGHTS PERSPECTIVE  The human rights approach provides moral principles that are the foundation of policy. As noted by Quinn and Degener (2002, p. 14),  Human dignity is the anchor norm of human rights. Each individual is deemed to be of inestimable value and nobody is insignificant. People are to be valued not just because they are economically or otherwise useful but because of their inherent self-worth…. The human rights model focuses on the inherent dignity of the human being and subsequently, but only if necessary, on the person’s medical characteristics. It places the individual centre stage in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society.

The human rights approach provides moral principles that are the foundation of policy. The human rights perspective is a paradigm shift away from the medical model. The medical model (or individual model) considers disability as a problem of the individual that is directly caused by a disease, an injury or other health conditions, and requires prevention interventions or medical care in the form of treatment and rehabilitation. The major policy concern of the medical model at the political level is to provide healthcare and rehabilitation services.  The human rights perspective is related to the social model, which sees disability as a social creation. With the social model, disability is not the attribute of the individual, but is instead created by the social environment and thus requires social change. It has become an essential tool to analyze oppressive and discriminatory structures in society. While the social model was central to the development of the CRPD, there are differences between the social model and the human rights approach to disability. For instance, Degener (2016, p. 3) notes that …whereas the social model merely explains disability, the human rights model encompasses the values for disability policy that acknowledges the human dignity of disabled persons. Only the human rights model can explain why human rights do not require absence of impairment.

Besides, under the social model, anti-discrimination legislation was seen as the policy solution and provided a shift away from welfare policies. “‘We want rights not charity’ was and still is a slogan to be heard around the world from disability rights activists” (Degener, 2016, p. 5).  The scope of the human rights perspective is broad and goes beyond anti-discrimination law, which is only part of the solution. In addition to civil and political rights, it also covers economic, social and cultural rights. Both sets of rights, civil and political rights, on the one

Part I: Human rights  13 hand, and economic, social and cultural rights, on the other, are covered under the UNCRPD. It recognizes that people need more than political participation and not being discriminated against. They also need housing, schooling, jobs and cultural participation.

CHAPTERS IN PART I The chapters in this first part of the book seek to understand when policies are consistent with a rights approach. They present different ways to frame and operationalize a human rights approach to contemporary policies with a focus on how people with disability in the Global North and South experience them. The chapters in this section are divided into three broad themes: framing inclusivity in research and education and international frameworks for disability policy; advocacy in disability policy; and the engagement of disability policy with laws and rights instruments in nations and regions. The ideas expressed in many of the chapters overlap, demonstrating the complex and dynamic intersections between human rights in theory and practice. The section opens with a personal narrative by Mia Boonen about finding joy as an artist and a disabled person. Mia turns the “personal is political” inside out, inviting readers to think about what it might take to create a world which offers more than an “unpoetic bare minimum” and where “demanding joy and artistry isn’t seen as frivolous,” but respectful of the importance of culture and shared humanity for human rights. Mia’s narrative invites us to think broadly about the place of policy in human rights dialogue. The first set of chapters in Part I emphasize the importance of people with disability taking a central place in the design, development and implementation of policy and rights-focused activity. Biggeri, Ciani, Griffo and Deepak articulate both the roles and the potentiality of emancipatory approaches in challenging power structures to create more equitable and rights-focused policy. Gómez-Carrillo de Castro explores ways that co-creation and knowledge production can take account of power structures to positively influence social policy. Using a disability justice framework, Gesser and de Mello show the contributions made by an academic center in Brazil to the field of accessibility in academic and political events. Em Dewhurst’s narrative sits alongside these chapters, offering a reflection on the impact of narrow representation and negative media tropes, and the ways this disempowers and marginalizes people with disabilities at a broad social level. Widening the lens, the following chapters use a range of methods to consider how participatory and disabled-led approaches affect human rights monitoring and engagement. Pinto and Cardim argue that participatory indicator-based frameworks are key to assessing progress in the realization of the human rights of persons with disabilities everywhere, using the CRPD as a focal point of analysis. Francis Watene, Mirfin-Veitch and Asaka take this idea further in applying article 33.3 of the CRPD, which requires civil society to be involved in monitoring the implementation of the rights of people with disabilities. Alongside these chapters, Honglu Zhu’s personal narrative demonstrates how transformative knowledge about the UNCRPD can be for identity and action. Of course, there are many implementation gaps in human rights frameworks. Ferri and Leahy’s chapter on the right of people with disability to participate in cultural life moves further into specific life domains, highlighting the discordance between aspiration and implementation in a critical policy and rights sphere.

14  Research handbook on disability policy The second thematic strand of chapters in this section address advocacy in disability policy. Several authors examine disability rights and policy in contexts of unrest and discord. Khawam and Akerkar draw on their research in Lebanon to illustrate how policy agendas are progressed in unstable and insecure states which cannot or will not invest in people with disabilities. Huque uses the example of Malawi’s new and progressive codified disability rights legislation to illustrate and examine how advocates work in different spaces to progress rights. Yang, Zhuang, Goggin and Wong question the effectiveness of human rights framings on pragmatic disability policy application in the Singaporean context, and Wang and Pan similarly draw conclusions about the distance between rights aspirations and policy implementation in Taiwan. Chien-Ju Chou brings these important issues to life in her narrative about the intersections between disability rights movements, policy and access to universal services. The final group of chapters in this section focuses particularly on the engagement of disability policy with laws and rights instruments, and the consequent effects on the access that people with disabilities have to their human rights. Amitsis and Marini analyze European disability policy through the framework of EU human rights, drawing out ways that both soft and hard policy instruments address statutory provisions on human rights. The following chapter by Marutama, Tsaputra and Pradipta complements this broad analysis in their application of how historical and legal framing constrains the Indonesian policy context. Prince uses the Accessible Canada Act as a more hopeful example of how nations can develop disability policy within human rights frameworks. Tim Chan’s narrative enlivens this discussion, showing very clearly that young people who communicate without speech bring much to the conversation about human rights. Bregaglio Lazarte, Camino Morgado and Constantino Caycho provide a critique of the CRPD implementation frameworks and monitoring mechanisms in Latin South and Central America. The narrative about affection and emancipation by Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira shines a light on how embodied rights are in everyday life for women who draw political and personal strength together. Bringing the section to a close, Musengi explores interesting ways that local, indigenous and decolonizing knowledges are being brought to bear in ways that challenge dominant policy constructs and create rights-informed alternatives.

REFERENCES Degener, T. (2016) A human rights model of disability. In P. Blanck & E. Flynn (eds) Routledge Handbook of Disability Law and Human Rights (pp. 31‒49). Routledge, London. Quinn, G. & Degener, T. (2002) Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability. United Nations, New York and Geneva. United Nations (2006) Convention on the Rights of Persons with Disabilities 2006. United Nations, New York and Geneva.

1. Narrative 1: Mia’s piece – Candice, “Defying Gravity” and I Mia Boonen

Tobin Siebers said it best: “Disability is not, therefore, one subject of art among others. It is not merely a theme. It is not only a personal or autobiographical response embedded in an artwork. It is not solely a political act. It is all of these things, but it is more” (2010, p. 20). My cane comes to every room with me. Her name is Candice, or Candy when she’s dressed up like a candy cane for the holiday season. She’s known for falling off the side of my chair, helping me walk around and generally just being “a character” in all the best ways. Candice, a notebook and my pen: the three things I need in every room. Sometimes I think the Venn diagram of “finding joy as an artist” and “finding joy as a disabled person” is a circle. I’m a theatre maker by trade, which basically means that I’m a professional silly person. As both an artist and an advocate; I love to pull phrases like “creative boundaries” and “artistic limitations” when I really mean “low budget” and “a government that doesn’t care about my community”. Turning inequity into quips is a survival tactic. I am forced to see the world differently – to paint inequity a different colour and call it pretty – and sometimes that can be fun. It’s a way of taking back control when I know that I am owed more by this world. Nonetheless, I find my ways through. I make adjustments, advocate for myself and I struggle and get angry when I refuse to be ignored. But I deserve more than that. I need more than that. In early 2020, I had the absolute pleasure of working with Kate Sulan from Rawcus – an all-abilities theatre ensemble that has been creating good theatre for several decades. Kate began her time with us by posing three questions: 1. What’s your name? 2. What song is stuck in your head? 3. What do you need? I could answer the first two easily: “I’m Mia Boonen, and “Defying Gravity” has been thudding in my brain for the past 24 hours, no matter how many times I tell it to stop.” But figuring out what I need? That’s a tougher question. Of course, I need to be safe, so I need Candice with me. Preferably, I need a chair or a soft place on the floor to work from too. But “feeling safe” is the bare minimum when I decide if I’m going to make art somewhere. Who says that access needs must only be practical? Why can’t they be poetic also? Yes, I need a room with a ramp. I need Candice by my side. I need to feel excited and encouraged and interested. I need room to think boldly and to speak my mind. I need to laugh! I need to discuss the podcast I just listened to about trees because I think it might just be the spark of my next show. I need “Defying Gravity” to get out of my head. I need collaborators, co-conspirators and community. 15

16  Research handbook on disability policy Both art and advocacy keep me in a constant state of dreaming. I spend my days imagining better things for the world and trying to make them happen. But the “better world” I’m imagining isn’t better because I can get into the hypothetical room where I could hypothetically make hypothetical art. I imagine a world where there’s no hierarchy of needs – where demanding joy and artistry isn’t seen as frivolous. I imagine a world that gives me more than an unpoetic bare minimum. I need Candice, yes. I need a ramp to the door and a bathroom downstairs. But I also need community, generosity and my notebook and pen. And I won’t stop until I get them.

REFERENCE Siebers, T. (2010). Disability Aesthetics. University of Michigan Press.

2. Knowledge production and human rights enhancement: the role and potentialities of emancipatory disability research Mario Biggeri, Federico Ciani, Giampiero Griffo and Sunil Deepak

1. INTRODUCTION The promotion of inclusive development entails the full and effective participation of everyone, including people with disabilities, in all decision-making processes, as is stressed by Art. 4.3 of the Convention of the Rights of Persons with Disabilities (CRPD – UN Enable, 2006). In order to foster the ability of people with disabilities to exert some degree of influence on these processes, it is necessary to develop meaningful opportunities for people to collect, analyse and disseminate information about their lives and the societies in which they live. This chapter discusses the extent to which emancipatory disability research (EDR) qualifies as a tool to foster the promotion of inclusive development. EDR supports people with disabilities and disabled people’s organisations to produce knowledge about their own lives and the different barriers (social, economic and cultural) that impede their full and effective participation in society. The core tenet of EDR is that people with disabilities act as co-researchers to progressively gain control during all steps of the research process, including the identification of research questions and elaboration of research methodology and data collection, analysis and dissemination. Throughout this process, academic researchers act as facilitators and providers of technical assistance. EDR has its roots in Paulo Freire’s (1996) and Augusto Boal’s approach to emancipation (Boal, 2006). They linked emancipation to a person’s capacity to analyse their lived reality, and they found that marginalised persons possess sharp analytical skills as long as they have the opportunity to put these skills into practice. Both Mike Oliver (1992, 1996, 1997), a theorist of the social model of disability, and Colin Barnes (2003) observed that socioeconomic research processes directly developed by people with disabilities could be considered as a means to empowerment through enhanced knowledge and strengthened collective action. EDR is clearly linked to and coherent with the overall approach proposed by the CRPD, especially where it relates to monitoring the implementation of the Convention, as stated in Art. 31 and Art. 33. Here, the CRPD requires state parties to collect adequate data and to promote the full participation of people with disabilities and disability organisations during the monitoring process. This kind of research contributes to the collection of quantitative and qualitative data to ‘identify and address the barriers faced by persons with disabilities in exercising their rights’.1 EDR can thus be used not only to map inequalities related to disability but also to describe and analyse inclusion/exclusion mechanisms and processes from the perspective of people with disabilities themselves. In this sense, EDR as an approach to disability 17

18  Research handbook on disability policy research can complement tools such as the question sets developed by the Washington Group on Disability Statistics (WG),2 which were intended to standardise disability measurement in surveys and national census. While WG question sets provide quantitative, standardised and comparable data on disability, EDR processes can provide context-based information. The main objective of the chapter is to propose a sound and flexible method to conduct EDR. To illustrate our proposed EDR method we will build on more than one decade of intense fieldwork with people with disabilities and their organisations. We describe nine case studies across six different countries: India (two case studies), Liberia, Mongolia, Mozambique, Palestine (three case studies) and Tanzania. The case study results demonstrate how EDR can influence decision-making processes. Following this introduction, the chapter will proceed as follows. Section 2 describes the theoretical roots of EDR. In Section 3, a flexible method to structure EDR processes is proposed. Section 4 presents a set of case studies and practical EDR experiences, highlighting the strengths and weaknesses of each. To conclude, possible implications in terms of further research and policies will be provided.

2.

THEORETICAL FOUNDATIONS OF EDR

2.1

Emancipatory Research: A General Evolution

As research (particularly social research) is a social act (Barton, 2005), it involves a wide range of individuals, groups and organisations. Interactions among these actors are permeated by ethical and procedural challenges as well as political dilemmas linked to power relations. Emancipatory research emerges from the development of several converging strands of works, the common origin of which lies in an overall dissatisfaction pertaining to the power structures embodied in research processes, with particular attention given to social and economic research. The work of Brazilian philosopher and pedagogist, Paulo Freire, has strongly inspired the development of emancipatory approaches to social research. Starting with his fieldwork in São Paulo’s favelas, Freire (1996) realised that marginalised people possess sharp analytical skills as long as they are provided with opportunities to investigate their own realities and reflect upon their living conditions. Interestingly, pedagogues working in vastly different, although still marginalised, contexts reached similar conclusions. As an example, Lorenzo Milani, an Italian priest and educator who worked in deeply deprived mountain areas in central Italy, conducted simple research activities on poverty and exclusion, with students from poor families (Mayo, 2007). At the time, Freire (1996) and Boal (2006) pioneered this kind of methodology through their work in the field of education (Justo and Erazun, 2005). Their approaches highlighted that conventional social research more or less implicitly presents the point of view of dominant social actors (usually wealthy, able-bodied, heterosexual males). Emancipatory approaches, on the contrary, propose horizontal, non-hierarchical, subject–subject relationships between researchers and research subjects wherein all participating parties are held in equal importance and are interchangeable as problem-solvers, thinkers and learners (Glassman and Erdem, 2014). Research is thus conceived of as a fundamental component of the work of ‘emancipation’ and ‘conscientisation’ to develop skills, improve problem-solving abilities,

Knowledge production and human rights enhancement  19 increase self-determination and gain greater influence over decision-making processes, thanks to stronger ownership and control of knowledge production processes (Boog, 2003). Emancipatory approaches are undoubtedly linked to the general development of participatory methods. The success of participatory methods has its roots in the work of Robert Chambers (1983), who strongly challenged traditional social research and, in particular, the relationship between social research and development project programmes. Chambers’ critique identified several biases in conventional data collection and analysis procedures that result in persistent ethnocentric attitudes on the part of experts, researchers and practitioners. Going beyond mere critique of traditional approaches, the stream of research initiated by Chambers contributed to the development of alternative toolboxes: rapid rural appraisal (Chambers, 1981, 1983) and participatory rural appraisal (Chambers, 1994). These are, perhaps, the most well-known examples of standardised procedures for conducting participatory research. The existence of these well-established and flexible methodological packages decisively strengthened the link between and contributed to the success of participatory methods and practical actions (Macdonald, 2012). While both Freire and Chambers worked predominantly within developing contexts, it is possible to find anticipations of emancipatory approaches to social research in the social and economic debate concerning high-income countries as well. Italian activist and philosopher Antonio Gramsci developed the concept of hegemony (Gramsci, 2007), which establishes a bi-directional relationship through which social actors are able to influence both current ways of thinking and decision-making processes. Notably, control of knowledge production processes might be a precondition to achieving social change and reshaping power relations. In addition to directly influencing Freire, Gramsci significantly impacted the work of labour sociologist Raniero Panzieri, whose fieldwork involving the Italian industrial working class highlighted the relevance of practices such as co-research and self-research (Panzieri, 1971), whereby a full assessment of exploitation, discrimination and deprivation mechanisms is possible only if subjects (i.e. industrial workers) are involved as primary actors within research activities. 2.2

The Development of EDR

In the early 1990s, Mike Oliver coined the term emancipatory research. In doing so, he offered a rich perspective with which to overcome the limits of conventional research on disability. Oliver (2002) found three main limitations to disability research: (1) the perspectives of people with disabilities were insufficiently reported; (2) there was a lack of impact on decision-making processes; and (3) it neglected the political dimensions of disability. Oliver thus proposed a deeper and more direct participation on the part of people with disabilities in the research process, to produce ‘collective accounts of collective experience’ within emancipatory research (Oliver, 2002, p. 4). Nowadays, the term ‘emancipatory research’ is used in diverse ways by persons working with different marginalised population groups. This kind of approach has strong linkages with intersectionality (Noel, 2016). That is why researchers tend to define emancipatory research according to the targeted group(s). When focusing on disability, it becomes quite clear that the emergence of EDR, besides its clear links with the previously described developments in the field of social research, can be traced back to major changes in the way disability has been approached, both socially and

20  Research handbook on disability policy politically. In particular, we refer to (1) the progressive success of the social and interactional model of disability and (2) the elaboration and wide adoption of the CRPD as the main global standard for addressing human rights, thus conceiving people with disabilities as right holders and the lack of their full and effective participation to the society as a violation of human rights (Degener, 2016). According to the social model of disability, people with disabilities are disabled by the barriers that characterise the context (Shakespeare, 2006). The interactional model of disability stresses the interaction between the impairment/health condition and the context the person is living in (Gill, 1987). The direct consequences, in terms of disability research, are that medical data on impairment prevalence provide only part (often the less interesting part) of the picture (Oliver, 2004). Disability research is expected to simultaneously address different aspects of disability (WHO and WB, 2011), including an effective analysis of barriers and facilitators. To this effect, EDR is a coherent and valuable tool, as it may allow for descriptions of inclusion/ exclusion, social, cultural and economic mechanisms from the perspective of people with disabilities. The adoption by the United Nations of the CRPD in 2006 marked the global espousal of the social and human right-based approach to disability as well as an acknowledgement of the existing link between disability and the much wider issue of human rights promotion and safeguarding. Among several relevant issues, the CRPD underscores the role of people with disabilities and disability organisations in decision-making processes (Art. 4.3). This includes the direct involvement of people with disabilities and disabled people’s organisations (DPOs) in monitoring the implementation of the convention. Considering CRPD monitoring mechanisms (Art. 31, 33 and 35), people with disabilities and DPOs are expected to contribute both by acting as counterparts of national governments and by elaborating shadow monitoring reports. This clearly entails a full and effective involvement in terms of data collection, analysis, dissemination and use (UN Enable, 2007). Once again, EDR demonstrates a clear structural coherence with this scenario. Notwithstanding the fundamental flexibility of EDR, eminent scholars delimited its range of action by identifying six useful principles (Stone and Priestley, 1996): (i) it should be rooted in the social model of disability; (ii) there should be acknowledgement of its political dimensions; (iii) it should promote self-emancipation and empowerment along with the removal of barriers; (iv) it should emphasise the collective dimension of individual experiences; (v) it should use a plurality of methods for data collection and analysis, according to the needs of the people with disabilities involved; and (vi) people with disabilities and DPOs should exercise the highest possible degree of control over the research process. This last point marks a clear distinction between emancipatory and participatory research. Emancipatory research is part of a broader category of participatory approaches but acknowledges that mere participation is not enough to connote the emancipatory nature of a research process. An EDR exists only if an explicit strategy is implemented to allow people with disabilities to have the highest possible level of control over the research process, which entails control over the definition of the research question, design of the research tools, analysis, and use and dissemination of results (Barnes, 2002).

Knowledge production and human rights enhancement  21

3.

STEPS FOR PLANNING AND IMPLEMENTING COMMUNITY-BASED EDR: A PROPOSAL

Hereunder, we introduce a specific approach to EDR planning and implementation, to be located in communities and involve groups of people with disabilities, with the external support of academic and other experts. We term this a community-based EDR (CB-EDR). As EDR is inherently context-based, it is generally hard to define it in terms of research tools and/or subjects covered by the research. An EDR could potentially address all the social, cultural and economic processes that hamper or foster the full and effective participation of people with disabilities in society. As such, the identification of topics to be covered by an EDR process should be the prerogative of the involved people with disabilities and/or DPOs. Research tools and methods should be identified in coherence with research questions and the existing constraints in terms of time and resources. Other ex ante limitations are not identifiable. EDR is often perceived in terms of qualitative research, but a combination of qualitative and quantitative methods could provide a deeper understanding of the chosen topic and enable triangulation of results. All in all, as was observed by Barnes (2003), the most important characteristics of emancipatory disability research are ‘the problems of accountability, the role of the social model of disability, the choice of methods, and empowerment, dissemination and outcomes’ (p. 3). The existing literature on EDR provides clear ethical and political principles for its conduct (Stone and Priestley, 1996; Traina, 2016; Chown et al., 2017). It is, however, more difficult to find operational hints on how to structure EDR processes. In general, it is possible to identify three broad categories of an EDR process: ● analysis of personal experiences of disability conducted by and/or with people with disabilities (Mahipaul, 2015; Sharma, 2015); ● case studies on DPOs, self-help groups, etc. that are conducted by people with disabilities (Kincaid, 2013); and ● mainstream research that is inclusive of people with disabilities (Klara, 2014). This may include the participation of people with disabilities as co-researchers, or it may be an evolutionary process by which those involved develop the necessary skills to carry out research together, with incremental changes bringing about an increase in the direct involvement of people with disabilities in all stages of the research process (Callus, 2016; Chown et al., 2017). This chapter summarises more than a decade of field research directly conducted by the authors, presenting common traits, strengths, weaknesses and lessons learnt. These experiences were previously described in other papers and research reports (Deepak, 2011; Deepak et al., 2014; Biggeri and Ciani, 2019a, 2019b; Biggeri, Ciani and Ortali, 2019; Ciani, D’Erasmo and Nitti, 2022), and a nine-step method to conduct a CB-EDR is here proposed. This procedure covers the entire lifecycle of a research project, with the objective being to conciliate two main achievements of CB-EDR, namely (i) the elaboration of a sound research output and (ii) the promotion of empowerment and emancipation at the individual and collective levels (Deepak, 2020; Deepak et al., 2014; Biggeri and Ciani, 2019a). The ambition of this chapter is, therefore, to capitalise on a structured field experience by contributing to the existing literature on EDR and going into some specific issues such as the link between EDR, the CRPD, collective action of people with disabilities and the link with the community.

22  Research handbook on disability policy The method comprises the following steps: (1) Preliminary phase: initial identification of the potential research location and its characteristics through the mobilisation of people with disabilities and DPOs. It entails a preliminary engagement of other relevant stakeholders and a first analysis of the financial and human resources to be mobilised. (2) Identify the EDR operative group(s) to be involved in conducting research. A group of people with disabilities (often linked to DPOs or other civil society organisations) is mobilised; while the level of commitment is likely to be heterogeneous across group members, the emergence of leaders is a typical achievement of the EDR process. (3) Identify an external research advisory committee whose role would be to (a) provide additional support, (b) act as ethical committee and (c) place EDR within wider academic debate. (4) Define emancipatory research questions and elaborate the EDR plan. DPOs and people with disabilities are expected to lead the identification of relevant barriers and related analytical approaches, while professional researchers provide technical advice. Following identification of the research question(s); a preliminary draft of the research protocol should be jointly elaborated. In most cases, the research questions are focused on barriers and/or facilitators. However, it is important for disabled co-researchers to reflect on the factors that drive and maintain marginalisation processes, in order to elaborate and expand on solutions for improving their participation to the community. Research topics and questions are chosen through group discussions, which allows each participant to freely express their point of view and relate their experiences. This is a decisive step to substantially challenge the power structures embedded in social research actions as it implies the prominence of people with disabilities in establishing priority areas of interest. The different points raised during the discussion process are (usually) ranked in order of relevance and feasibility (e.g. through the construction of problem trees). (5) Design and organise training for the co-researchers who will conduct and implement research processes. Training needs and objectives should be identified in accordance with research protocol, which might entail both key skills for teamwork (including conflict management) and technical skills strictly linked to research protocols. Training sessions could be led by professional researchers who would facilitate the learning process through participatory methods that draw on different tools. (6) Co-design research tools: an EDR toolbox should result from cooperation between academic researchers and people with disabilities/DPOs. (7) Identify supporting mechanisms for the implementers of EDR. For instance, for participants with disabilities, it might be necessary to provide specific adjustments to certain research procedures to ensure that all proposed activities are fully accessible to all. For people with visual impairments, it would be crucial to make documents available in large-size print and braille (Deepak, 2011), while other adjustments would be required for those who are D/deaf or intellectually impaired. (8) Analyse and scrutinise research results: the collected information is expected to fill gaps in knowledge and understanding of the mechanisms that prevent people with disabilities from fully and effectively participating in society. While the process of data analysis is usually facilitated by professional researchers in cooperation with trained participants,

Knowledge production and human rights enhancement  23 it is essential to present key findings to all participants and communities. Where results may be difficult to understand, it is important to present them in clear and accessible terms using non-technical language and concepts. Lastly, it is crucial to stimulate debate as this could bring to evidence unexpected explanations of results as well as underexplored analytical perspectives. The analysis process can also include discussions on possible actions to mitigate and/or overcome any barriers. (9) Community and other stakeholder engagement: an EDR process ought to involve all actors that are expected to actively participate in an inclusive community. This might include local institutions, trade unions, religious and political organisations, etc. If possible, stakeholder engagement should be structured in accordance with a multilevel perspective: i.e. it should target actors at local, national and international levels. Community engagement includes communication and advocacy activities aimed at fostering cultural change or which may influence debate and policy making. (10) Evaluate the EDR process: the evaluation of EDR processes should be structured in light of its objectives. This implies two levels of evaluation: the first focuses on the quality of scientific output, while the second focuses on impact in terms of empowerment at the individual (i.e. the impact of the co-researchers) and collective levels (i.e. impact on collective action and influence on decision-making processes).

4.

CB-EDR IN PRACTICE: LESSONS LEARNT FROM NINE CASE STUDIES

This section will briefly introduce nine CB-EDR case studies the authors were involved in, and which illustrate the opportunities, limitations and potentialities of EDR. Table 2.1 summarises the main features of these nine case studies. Each of these CB-EDR projects were developed in the framework of international cooperation projects,3 and all involved people with disabilities, DPOs, professional researchers and NGOs. Despite the impossibility of providing detailed analysis of each case study, it is of interest to present a summary of common traits and lessons learnt from a decade of intensive fieldwork. The CB-EDR cases presented show that once control over the research process was given to people with disabilities, and they started discussing the different models for understanding disability (medical, social and human rights), the research focus gradually shifted from impairment (i.e. aetiology and taxonomy of impairments) to the barriers preventing people with disabilities from full and effective participation in different domains of life. Among some groups of people with disabilities, such as blind and D/deaf persons, the shift from medical to social and human rights models tended to be much more emphatic compared with people with disabilities with chronic and more degenerative conditions, where the medical domain is structurally more relevant because medical interventions are continuously required to maintain a level of functioning (Deepak, 2020). The flexibility and adaptability of the CB-EDR procedure can be seen in its application across the diversity of the case studies. We tested CB-EDR processes in six countries across different continents, including Asia, the Middle East and North Africa region and sub-Saharan Africa. Moreover, the different case studies addressed a wide range of life domains, all with

24  Research handbook on disability policy Table 2.1 Year

CB-EDR case studies CountrY

India [Mandya and 2010–2011 Ramanagaram districts, (Karnataka)]

2013

India: Bidar [Karnataka]

Palestine [Nablus, 2016–2017 Ramallah, Bethlehem] 2017

Palestine [Nablus, Ramallah, Bethlehem]

Main target

Main FoCus

Qual Quant tools tools reFerenCe(s) (Y/n) (Y/n)

Barriers to participation in community life People with and access to disabilities Y (children, adults basic services (including and elderly) community-based rehabilitation) People with Analysis of disabilities who violence, Y experienced discrimination violence and victimisation Barriers to access Young women to education and Y with disabilities to decent job People with disabilities identified among DPOs senior activists

Accessibility of the education system

N

Participation in Mongolia Young men and community life [Urban and women with Y 2018–2019 sub-urban areas disabilities of Ulaanbaatar] Access to decent Young men and job and vocational Mozambique training Y 2019–2020 [Maputo, Beira women with disabilities and Pemba] Access to People with education and Tanzania Y disabilities and 2019–2020 other basic [Iringa district] family members services Participation in Liberia community life [Bong, People with and employment Y 2019–2021 Nimba and disabilities (including Grand Gedeh self-employment) counties] Access to People with Palestine education and disabilities [Nablus, 2021 vocational Y identified Ramallah, (ongoing) training Bethlehem and among DPOs senior activists Gaza] Source: Authors’ elaboration.

Y

●Deepak et al., 2013 ●Deepak et al., 2016

Y

●Deepak et al., 2014

Y

Y

●ARCO and RIDS, 2016 ●Biggeri and Ciani, 2019b ●ARCO and EDUCAID, 2017 ●Biggeri and Ciani, 2019a

Y

●Deepak, 2020 ●Deepak et al., forthcoming

Y

●ARCO and AIFO, 2019 ●Ciani, D’Erasmo and Nitti, 2022

Y

●ARCO and IBO, 2021

Y

●The CB-EDR is ongoing

Y

●The CB-EDR is ongoing

Knowledge production and human rights enhancement  25 a focus on the barriers faced by different types of people with disabilities. Usually, life domains were selected according to the co-researchers’ priorities; barriers to participation in employment, education and vocational training were topics more often targeted when young people with disabilities were involved (see the Palestine, Mozambique and Mongolia case studies in Table 2.1), whereas the involvement of disabled women generally resulted in a deeper focus on the relationship between gender and disability. Collectively, the results of these CB-EDR case studies can be easily linked to the CRPD articles, and as a consequence, CB-EDR proves itself a valuable tool to monitor the implementation of the CRPD itself. CB-EDR was also used to focus on specific forms of multiple discrimination, such as the barriers encountered by those who experience both gendered and disability-related discrimination (see ARCO and EDUCAID, 2017). Other intersecting forms of discrimination or disadvantage that were addressed (and addressable) through CB-EDR in the case studies entail discrimination linked to age, specific forms of disability (e.g. albinism in Mozambique and Tanzania as reported in ARCO and IBO, 2021, and Ciani, D’Erasmo and Nitti, 2022) and locality (e.g. rural versus urban). In other words, through CB-EDR, disability is not addressed as a static label but as a multifaceted phenomenon that is part of human lives and the heterogeneity of humankind, which is coherent with the social and human right-based approach to disability, as embraced by the CRPD. CB-EDR often proved to be a valuable tool to explore extremely sensitive issues such as violence. For instance, the CB-EDR conducted in India, which focused on emotional, physical and sexual violence towards people with disabilities, was highly effective in identifying a prevalence of violence and uncovered a problem that was previously perceived as too big and too difficult to deal with. The CB-EDR conducted in Mongolia focused (among other topics) on barriers to sexuality for men and women with disabilities (Deepak, 2020). Notably, the disabled women who were involved as co-researchers, building on research results, succeeded in involving the Department of Social Welfare in the establishment of a dedicated phoneline to provide advice on sexual and reproductive health. Comparatively, discussions among male co-researchers achieved limited results. The identification of different fieldwork tools to fit the ‘toolboxes’ in the CB-EDR case studies was mainly driven by the chosen research questions. Both qualitative and quantitative tools were used. Co-researchers with disabilities often perceived the use of quantitative questionnaires as challenging, and so ad hoc training was required. Nonetheless, the CB-EDR conducted in Palestine and Mozambique was characterised by successful quantitative surveys based on in-person structured interviews (with samples up to 300 observations). Additionally, the use of life-course interviews (LCI) is a common feature of CB-EDR (Halvorsen et al., 2017), and LCIs are often identified as valuable tools given their ability to present retrospective analyses about barriers and how these shape life trajectories (ARCO and EDUCAID, 2017). Visual research tools were used in CB-EDR processes in India, Liberia and Mongolia (Deepak et al., forthcoming; Deepak et al., 2016). In Mongolia, co-researchers invited people with disabilities to use photography and videos to document the barriers they faced in their daily lives: as an example, one participant with cerebral palsy documented his experience of using a public bus, while another captured the barriers he had to deal with being a wheelchair-user and living in a slum area. The considered case studies highlight a relevant limitation and vulnerability of the proposed CB-EDR approach. CB-EDR processes proved to be more effective where the ground was previously prepared by the rooted presence of DPOs and other organisations working on

26  Research handbook on disability policy the promotion of the rights of people with disabilities. Indeed, the action of DPOs and other organisations tend to create an enabling environment where people with disabilities are more likely to enjoy the opportunity to develop both hard and soft skills. This was a problem, particularly in Northern Mozambique and Liberia, where a non-negligible share of participants experienced difficulty when handling primary research tools. These problems opened the perspective of two additional workstreams to further improve CB-EDR. First and foremost, a context-based critical analysis of CB-EDR processes is needed to understand how to lift the barriers to participation affecting the CB-EDR processes: this might entail a critical re-thinking of tools, timing and preparation of CB-EDR processes. Second, it might be worthwhile to work on skills and capacity development by adapting the training and co-creation process to the different contexts. By way of example, in Northern Mozambique, it was necessary to invest in capacity building early in the project to strengthen co-researchers’ self-confidence in handling interpersonal relationships (Ciani, D’Erasmo and Nitti, 2022). During the CB-EDR conducted in India and Liberia, it was more difficult to involve people with disabilities who faced significant social stigmatisation, such as persons with leprosy-related disabilities and epilepsy, in group dynamics with co-researchers who experience other impairments; during meetings and training sessions, they tended not to mix with others and made limited contributions to the discussions. Working to improve group dynamics and peer-learning could be key to overcoming such difficulties. In India, Mongolia and Liberia, the CB-EDR involved a small number of people with disabilities with limited or no formal education. However, the peer-support of colleagues with more formal education enabled them to participate in data collection and other CB-EDR activities. In general, researchers must pay attention that participation is full and effective for everyone and that conflicts and divergences are allowed to emerge and to become a subject of discussion. If needed, the research staff should include professionals with a specific background in the management of groups and of peer-to-peer dynamics; DPOs are often the best source to find this kind of skill (Griffo, 2007; ARCO and EDUCAID, 2017; Ciani, D’Erasmo and Nitti, 2022). People with cognitive and psychosocial disabilities tended to experience greater difficulties when it came to participating as co-researchers. The CB-EDR conducted in Maputo, Mozambique, can be considered as a success in this regard. The key, in this instance, was to foster an enabling relational environment within the group of co-researchers, which allowed the additional barriers usually experienced by persons with cognitive and psychosocial disabilities to be lifted. DPO involvement also proved to be a crucial success factor for CB-EDR: First, DPOs acted as crucial intermediating entities between professional researchers and disabled co-researchers, as they facilitated dialogue and mutual learning. In all our CB-EDR case studies, DPOs supported the mobilisation of co-researchers and identified experienced people with disabilities who were able to act as tutors during the research process. In other instances, co-researchers were directly identified by the DPOs among senior activists (often members of the DPO’s board). For example, in the case of the CB-EDR conducted in Palestine in 2017, a group of senior DPO activists became co-researchers. Second, DPOs provided necessary expertise to allow for full participation of all co-researchers, by improving and adapting research tools and training sessions to make them more accessible (e.g. by translating questionnaires and other tools into braille or by offering sign language translation during training sessions). DPOs and other civil society organisations

Knowledge production and human rights enhancement  27 handled key logistical issues linked to training sessions, data collection (including the related mobility issues) and other steps of the CB-EDR process. Third, DPOs were key to capitalising upon human resources, which were strengthened by participation in CB-EDR. For example, the CB-EDR conducted in India, Liberia, Palestine, Mozambique and Mongolia facilitated the emergence of a new generation of disabled leaders and activists. One co-researcher in India subsequently contributed to the creation of a state-level federation of DPOs, while two other co-researchers together founded a new DPO for promoting sport activities among people with disabilities. Meanwhile, the ongoing CB-EDR in Palestine benefits from the support of disabled trainers and field coordinators who, as a result of being engaged as co-researchers in past CB-EDR projects, acquired the technical and interpersonal skills needed to play major roles in future projects. Fourth, DPOs were key to converting the empirical results acquired through CB-EDR into knowledge exchange outputs that can impact decision-making processes (e.g. central and local government policies, NGOs activities, etc.) and lead to policy changes. In this way, DPOs along with other stakeholders are ideal candidates for influencing policy makers, designing new services and raising awareness through research. However, whenever DPOs were less structured (as was the case for the CB-EDR conducted in Tanzania), the emancipatory dynamics of the process were impacted, and so professional researchers and other organisations (e.g. NGOs, trade unions) were required to play a more active and direct role to achieve the goals of the research. During the CB-EDR conducted in India, Mongolia and Liberia, researchers had opportunities to meet with authorities to question them regarding the barriers they identified. In Mongolia, research took place in the capital city, Ulaanbaatar, where the researchers visited national-level institutions and, on two occasions, were able to question government ministers. In India, the 2010–11 research project occurred at district level, with the co-researchers able to obtain the commitment and support of district authorities. In Palestine, people with disabilities who had been trained as co-researchers subsequently organised and held training sessions for local authorities and civil servants that focused on accessibility and inclusion. These initiatives helped the people with disabilities involved in CB-EDR to strengthen their mobilisation and advocacy skills, and assets for DPOs. In other settings, the level of accountability of public authorities was weaker, and this impacted the capacity of CB-EDR to influence decision makers. In Liberia, for example, the engagement of local authorities was less strong, due in part to there being limited resources available for public institutions and their representatives. By bringing together persons with different kinds of disabilities, and by enabling them to critically examine the barriers that exist within institutions, the CB-EDR process exposed the DPOs themselves to the scrutiny of researchers. This allowed barriers within the DPOs to be identified and promoted greater inclusion. For example, the CB-EDR process in Liberia identified the lack of accessibility of DPO offices by showing that, while a large number of women with disabilities were DPO members, almost all the institutional roles were held by men. It also showed that persons with hearing and speech disabilities, psychosocial disabilities, intellectual and learning disabilities and epilepsy and leprosy-related disabilities were either missing or extremely underrepresented among DPO members. The tenth and last step of the proposed CB-EDR procedure (i.e. the evaluation of the process) needs to be further explored and systematised. Qualitative participatory assessments of the CB-EDR process and their impact in terms of empowerment were conducted among the young disabled women who participated as co-researchers in the Palestinian case study

28  Research handbook on disability policy (ARCO and EDUCAID, 2017), while quantitative assessments were also attempted in India, Liberia and Mongolia (Deepak, 2020). However, the assessment process was neither standardised nor sufficiently structured. In particular, the evaluation should not be limited to individual empowerment but extended to a more comprehensive assessment of the impact on the actual enjoyment of rights: this should entail a multilevel approach that targets the context as well, by clarifying whether and how the CB-EDR process contributed to challenge existing power structures and, in the last instance, to reshape the collective perception of what people with disabilities is allowed to be, to do, to hope, to claim and to become. Forthcoming CB-EDRs will hopefully be more focused in this regard. Nonetheless, preliminary results suggest that the empowerment process works across the following three levels: (1) Individual: individuals become more confident, articulate and assertive in decision-making and in venturing out into new surroundings. By inviting people with disabilities to become co-researchers, the CB-EDR helps them to interact with others, move beyond familiar confines and gain a better understanding of their legal rights and entitlements. Thus, the impact on personal characteristics is usually the most visible sign of empowerment. (2) Community: interpersonal relationships between disabled co-researchers and their families, neighbours, peers and colleagues and communities: the final assessment of the CB-EDR processes featured numerous cases of people with disabilities whose autonomy had increased dramatically thanks to their participation in CB-EDR (e.g. some obtained a driving licence or became autonomous in self-care activities). Moreover, as a result of participating in data collection processes, they were exposed to and navigated unfamiliar relational dynamics and social roles (e.g. conducting interviews with professionals or civil servants, facilitating group discussions, etc.). (3) Institutions: people with disabilities were encouraged to interact with different institutions, such as village councils, schools, health services, the police and judicial systems, which resulted in an improved capacity to understand institutional roles in terms of citizenship right. Instances within the CB-EDR processes where disabled co-researchers had greater interaction with institutional representatives, and so were able to instigate actual change, had greater impact. For example, DPOs involved in CB-EDR in Mongolia reported that an increased number of institutions made themselves available to establishing fruitful dialogue.

5. CONCLUSION The analytical perspectives that are used to conceptualise disability have dramatic consequences in terms of how disability research is structured, which actors are involved in research processes and what are their roles. For example, where a biomedical approach to disability is adopted, research activities tend to focus on impairment, epidemiology and the cost of disability for individuals and society; in these instances, people with disabilities are considered to be sources of information at most, while the research is conducted and managed by professional researchers (Stone and Priestley, 1996). The use of the social and human rights approach to disability, which is coherent with the CRPD, entails a shift in research focus from impairment to the barriers and facilitators that

Knowledge production and human rights enhancement  29 shape our societies. In this approach, the direct participation of people with disabilities within research processes constitutes an essential component of the research itself (Griffo, 2018). In this sense, EDR establishes plausible strategies to structure research processes in full coherence with the CRPD and the social and human rights-based approach to disability. The goal of the CRPD is that people with disabilities come to recognise and enjoy full citizenship rights. In other words, people with disabilities are not merely the objects or beneficiaries of policies, programmes or projects, but rather they are subjects, rights holders and drivers of the changes needed to promote the implementation of a social and human rights-based model of disability. EDR can thus be a tool for the promotion of the human rights of people with disabilities in three main ways. The first is the analysis of the barriers and facilitators characterising our societies and hampering the full enjoyment of human rights for people with disabilities. The second is the increase in the quality and effectiveness of the collective action of people with disabilities and their organisations. The third is the promotion of changes in terms of policies and culture in the direction of the full and effective participation of people with disabilities in society. This chapter proposed and presented a specific procedure for CB-EDR, which has been developed at the community level in various developing countries. In CB-EDR, people with disabilities without academic experience or specific expertise are trained and supported to develop field research, through the lens of a social and human rights-based model of disability that focuses on different kinds of barriers that characterise various life domains. By examining the presented procedure and proposed case studies, several interesting points emerge, which we summarise as follows: First, considering its extreme flexibility, CB-EDR appears to be a valuable tool that could contribute to monitoring the effective implementation of the CRPD in different contexts by favouring the direct participation of people with disabilities and DPOs (coherent with Art. 31 and Art. 33). Second, the full participation of people with disabilities and DPOs can produce policy innovation. As such, CB-EDR can be used not only to identify barriers but also to plan appropriate interventions to dismantle them and, so doing, to progress towards full and effective implementation of the CRPD. As an example, and for precisely this reason, the Italian Agency for Development Cooperation officially adopted CB-EDR as a planning tool for disability mainstreaming (AICS, 2018). Third, as evidenced by its record of academic publications (Deepak et al., 2013; Deepak et al., 2014; Deepak et al., 2016; Biggeri and Ciani, 2019a, 2019b; Biggeri, Ciani and Ortali, 2019), CB-EDR has the potential to produce sound scientific outputs. Fourth, participation in CB-EDR processes strengthens DPOs in terms of both their capacities and ability to collect and analyse information and, thus, of their being considered a valuable counterpart by public authorities and other actors (e.g. other NGOs, trade unions, etc.). Fifth, despite the need to develop more comprehensive cross-level approaches to analyse the impact of CB-EDR on the actual level of rights enjoyment experienced by people with disabilities, participants within CB-EDR processes and existing preliminary evidence (mainly limited to individual empowerment) suggests that impact is positive and multifaceted. Nonetheless, a more rigorous impact assessment of the empowerment promoted by the participation in EDR processes can be considered among the more urgent developments of EDR. In particular it could be interesting to understand more about CB-EDR’s tangible and intangible impact on

30  Research handbook on disability policy the extent to which different contexts foster (or hamper) the full and effective enjoyment of human rights for people with disabilities. In summary, CB-EDR is a promising strategy that favours dialogue between different and often too distant actors and stakeholders. People with disabilities, public institutions, research institutions, DPOs and other civil society organisations are all concerned actors for whom CB-EDR can provide a valuable arena in which to facilitate dialogue, structure mutual exchange and bring about change in culture and practices. Academic researchers and DPO representatives may play a bridging role in sharing the learning and understanding gained from CB-EDR processes with a wider academic audience, as well as with policy and decision makers. This process of documenting and translating community action is necessarily imperfect – only a part of all that happens at a grassroots level can be documented and translated – yet, it has the potential to provide a deeper understanding of the powerful forces and catalysts of change that could be stirred into motion.

NOTES 1. 2. 3.

Start of endnote. See Art.31 of the CRPD. End of endnote. Start of endnote. See: https://www.washingtongroup-disability.com/. End of endnote. Start of endnote. The Italian Agency for Development Cooperation (AICS) and EuropeAid were among the international funding agencies. End of endnote.

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3. A journey together – co-creation and experiential knowledge of people with intellectual disabilities in social policy María Gómez-Carrillo de Castro

1. INTRODUCTION This chapter presents a case study of a participatory research project with people with intellectual disabilities in Spain and the epistemological value of participatory research in social policy. The Convention on the Rights of Persons with Disabilities (CRPD) changed the conceptualization of people with disabilities and brought gaps in social policy to light. Decades of activism and mobilization of people with disabilities and their organizations preceded the adoption of the CRPD (Sabatello, 2013). Researchers and Disabled People’s Organizations have pointed out how research contributes to the stigmatization and marginalization of people with disabilities, which led to renewed calls for participatory research within disability research. In a separate trend, co-design in policy making and public services has gained attention and importance in policy production and implementation, to bring policy and research closer (Metz et al., 2019; Needham, 2008). Experiential knowledge is recognized as a valuable source to produce much-needed data and insights to inform social policy, and to transform it to become compliant with the CRPD.

2.

DISABILITY AND SOCIAL POLICY

There is a growing movement towards the use of evidence in policy making and evaluation (Supplee & Metz, 2015) and for scientists to engage with the world outside academia. Co-creation is conceived as a way of bringing science and policy closer (Sienkiewicz & Mair, 2020). One of the reasons to use participatory research is to improve the quality and significance of the research, and to produce a socially robust and holistic understanding of the problem (Schmidt et al., 2020). Participation can be key in filling in gaps in policy design, implementation and evaluation. Social policy has often treated people with disabilities as a separate and homogenous group, from a deficits and medical perspective rather than based on capacities and equal opportunities (Waddington, 2001). People with disabilities are beneficiaries of social policies as a distinct group and as a transversal one. For instance, people with disabilities have a higher unemployment rate than the general population (Luciano et al., 2014), are more likely to live in poverty (Banks et al., 2017) or to have housing problems (United Nations General Assembly, 2017). Social policy struggles with different challenges to address this group’s needs, e.g. excluding people with disabilities from mainstream social policies, using a medical model in its design or the challenge of operationalizing disability. Under these premises, research has overlooked 33

34  Research handbook on disability policy people and compartmentalized experiences, treating them as unrelated when in fact they are not or reducing them to a single identity, which is problematic (DiQuinzio & Young, 1997). Further, it has contributed to more stigmatization and marginalization of disabled people (Arstein-Kerslake et al., 2020). Research has particularly missed out on the knowledge and experiences of people with intellectual disabilities (Nind, 2017). This population is heavily affected by discriminatory policies, e.g. institutionalization or disability certificates based on a medical model of disability (Devandas Aguilar, 2017). People with intellectual disabilities can, through research, contribute to highlighting gaps or stigmatization in policies and practices. For example, the pandemic has brought to light the deficits of the current care system (Brennan et al., 2020). A participatory action research project was conducted in China to assess the needs of people with disabilities and older people during the COVID-19 pandemic and to advocate for change (Yue et al., 2020). A Canadian participatory publication highlights the structural inequities enhanced by the pandemic and its policy management (Fudge Schormans et al., 2021). Research can be useful in monitoring the implementation of the CRPD and in the identification of barriers to full enjoyment of rights. For instance, the Irish Inclusive Research Network (IRN) produced a report on going to the doctor (IRN, 2019), which documents psycho-emotional disabling attitudes that constitute barriers to the full and effective enjoyment of the right to health. Their report Our homes (IRN, 2015) on the right to independent living illustrates different rights violations in care home settings and provides insights into independent living skills, preferences and forms of support available to people, and showcases what desirable support looks like. These two reports show how inclusive research can provide evidence in social policy issues, on barriers to full enjoyment of rights and on what type of practices can be done to remove these barriers.

3.

THE VALUE OF PARTICIPATORY KNOWLEDGE PRODUCTION IN SOCIAL POLICY

Social policy is considered an applied social science (Spicker, 2011), which attempts to meet human needs for wellbeing. Its design and implementation will affect how human rights are shaped and upheld. Social phenomena cannot be separated from the social environment (Spicker, 2011) and are better understood as situated knowledge (Schram, 2012), which calls for the expertise of those with lived experience. Flyvbjerg introduced the Aristotelean concept of phronesis applied to social sciences (Flyvbjerg, 2001), which was picked up by Spicker to apply specifically to social policy (Spicker, 2011). Phronetic science is less concerned with establishing the causes of a certain issue, but rather replying to the question ‘What works?’ It does not seek to establish causes or correlations but has a more practical approach to addressing the needs and issues of a community. Phronetic social science rejects the fact–value distinction prevalent in mainstream social science and offers contextualized knowledge that is appropriate to a particular setting and to a specific problem (Schram, 2012). Spicker’s proposal on phronesis considers experiential knowledge as a source of valid knowledge and of generalizability (Spicker, 2011). Phronesis, as a type of applied knowledge, differs from techne in its interest in judgement, as to reply to the question what one should do in this situation. Participatory

A journey together  35 research, in combination with human rights, can provide for that experiential knowledge with moral and legal guidelines, as explored below. Awareness has grown about the complexity and the urgency of the problems addressed by public policy (Hudson et al., 2019; Sienkiewicz & Mair, 2020). Policy failures and policy implementation gaps receive more attention, and implementation at a local level is deemed to be very context dependent (Hudson et al., 2019). As a response to this, the literature emphasizes the need for policy makers to confront the ‘messy engagement of multiple players with diverse sources of knowledge’ (Davies et al., 2008, in Hudson et al., 2019, p. 3). Participatory research, in contrast to traditional research methodologies, avoids monopolizing information and knowledge in the hands of experts and supports the view that participants hold valid knowledge on the issues and how to approach them, which can be triangulated with the knowledge produced by other actors (Francés García, 2016). Triangulation is considered to be a ‘key criterion for the conversion of research conclusions into policy and practice’ (Brown, 2001, p. 146). While traditional research and policy design tries to reduce elements, is linear or believes that the past will replicate in the future (Mueller, 2020), in participatory research participants bring along all complexities, worldviews and awareness. Participatory research necessarily contextualizes the issues, a much-sought request when considering social policy problems (DiQuinzio & Young, 1997). It constitutes problem-driven research, connecting theory and practice in a better way (Schram, 2012). Thus, it is an appropriate tool to tackle policy responses or programme designs that do not consider a particular group’s preferences or that are based on research that has failed to accurately reflect information about the context and people in which they will operate (Cornwall & Jewkes, 1995; Wolff, 2011). When researching social policy, the focus falls on human agency or on structures that influence behaviour (Greener, 2002; Musolf, 2003). Participatory research can, on the one hand, reveal or study structures or barriers to full enjoyment of rights, and, on the other, promote change in participants (Peralta, 2017). It constitutes a methodology that allows for a focus on both structure and agency. In addition, both quantitative and qualitative methods can be pursued under a participatory paradigm. Co-creative approaches are considered to be a unique research approach that serves as a platform for critical reflection, ongoing improvement and debate on ethics and legitimacy (Metz et al., 2019). Ethics and legitimacy have been problematized by disability and social policy scholars. Flyvbjerg calls on researchers to put power at the core of their analysis, as he considers that power produces knowledge and vice versa (Simmons, 2012). In a similar line, participatory research, in all its modalities, problematizes where power lies and how it is relinquished. Praxis has also been highlighted within disability studies (Nind, 2017) and how it can create knowledge communities, in which people with intellectual disabilities are engaged in generating knowledge. Participatory research rejects the notion of objective knowledge and is based on the construction of knowledge through human interpretation and interaction. Participants’ input to the research design, from the research question to the research tools (survey, questions, materials) and analysis and outputs, enriches the research, making it closer, understandable and relevant to the community (Peralta, 2017).

36  Research handbook on disability policy

4.

PARTICIPATORY RESEARCH AND PEOPLE WITH INTELLECTUAL DISABILITIES

People with disabilities have historically been excluded from conducting research but constituted as the object or subject of research (Oliver, 1992). In addition, research on people with disabilities on many issues about their lives is often done under the medical and individual model. This constitutes a form of discrimination and oppression (Stone & Priestley, 1996), as it continues to consider the person as ‘deficient’, ‘needing treatment or rehabilitation’. Research approaches framed around participation with people with disabilities include participatory research, emancipatory research, community-based participatory research (CBPR) (Nicolaidis et al., 2011), participatory action research, inclusive research (Walmsley et al., 2018), Disability Rights Promotion International (DRPI) and human rights-based research (Arstein-Kerslake et al., 2020). These methodologies problematize the treatment of people with disabilities as the object of research. Additional common themes are the requirement to share power and hand over control of the research to people with disabilities, monitor power relations, a political commitment for change based on the social or human rights model of disability, a focus on the environment, structures and context rather than on the individual and an understanding of research as a tool for change. Researchers cannot remain neutral but have a duty towards disabled people in their quest for social justice. Participatory research is used loosely to refer to the involvement of a community, in this case people with disabilities, in the definition of the research question and the different research phases. The task of participatory research is to educate the community on how research is done, empower it to be able to decide over the research process, create spaces for deliberation and decide (Francés García, 2016). The involvement of people directly affected by the issue at stake will provide a better understanding of the issue and potentially improve the implementation of solutions. CBPR is based on the principles of considering the average citizen (participant) as useful rather than an obstacle or problematic. The community (participants) should be at the centre of the project. CBPR is a form of sharing power and becoming accountable to the community (Peralta, 2017). Involvement in participatory research facilitates the process itself of researching and is a way of incorporating the community’s reflections and creativity in the research (Peralta, 2017). DRPI developed a collaborative methodology to monitor the implementation of the CRPD. It proposes a triangulation of data to obtain a full picture of patterns of human rights violations across different life domains (Rioux et al., 2019). The data collected covered a collection and analysis of daily life experiences of people with disabilities, the review of national legislation and its compliance with the CRPD and media monitoring to represent societal attitudes towards people with disabilities. DRPI places great value on the research process as a means for building capacity and empowering people with disabilities as well as fostering collaboration. DRPI moves away from measuring to letting participants define the standards and indicators which are used in the research process, which is responsive to different cultural and social contexts. The benefit is that being interviewed by peers creates a relationship of trust and enhances the understanding on the issue of the researchers – advocates (Rioux et al., 2019). Emancipatory research puts researchers at the service of people with disabilities (Stone & Priestley, 1996). Researchers must commit overtly to the social model of disability, surrender objectivity, commit to research that empowers people with disabilities or eliminates barriers

A journey together  37 and conduct research that is led or controlled by people with disabilities and their community (Stone & Priestley, 1996). Some disability studies scholars have criticized participatory research methodologies for not being committed to the empowerment of people with disabilities, for instance, in the case of research involving people with intellectual disabilities based on normalization theory (Arstein-Kerslake et al., 2020). Inclusive Research Inclusive research specifically focuses on the participation of people with intellectual disabilities. It is less well known than participatory research (Nind et al., 2016). Some authors describe it as an umbrella term for a range of research approaches, including participatory, emancipatory or action approaches with people with intellectual disabilities, who are included in different capacities: interviewers, advisors, life historians and autobiographers (Walmsley, 2001). Walmsley and Johnson described inclusive research as that which ‘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’ (Walmsley & Johnson, 2003, p. 10) and propose the following characteristics to define inclusive research: ● the research problem is owned by disabled people; ● it is conducted to further their interests and address issues which matter to them and ultimately lead to improving their lives; ● it is collaborative, involving people with learning disabilities in the process of doing the research and accessing and representing their views and experiences; ● people with learning disabilities exert some control over process and outcomes and are treated with respect by the research community; and ● the research question, process and reports are accessible to people with learning disabilities. (Walmsley & Johnson, 2003, p. 64) The IRN has defined inclusive research as: ● ‘Creating a place where people with intellectual disabilities are supported to do their own research. ● Sharing power: People with disabilities are part of decisions at all stages of the project ● Building a research community in Ireland.’ (Inclusive Research Network, n.d.) Particularly interesting from this definition is the idea of building a research community and the creation of a space where people with intellectual disabilities are supported to participate and be part of the decision-making process at all stages. This idea is also present in human rights-based participatory research (HRBPR). Inclusive research draws from the social model of disability and normalization theory. Normalization theory has been criticized due to the lack of commitment to the social model and partly shows the difficult standing of inclusive research within disability studies. According to Walmsley, normalization puts the responsibility for change on non-disabled people, rather than letting people with intellectual disabilities lead the change. In this sense, it shares a limitation with emancipatory research, as one cannot emancipate another person nor attribute a ‘positive social identity’ without the person with intellectual disabilities’ own will and action to take these steps (Walmsley, 2001). Walmsley points out that normalization promotes participation in research, but on the non-disabled

38  Research handbook on disability policy academics’ terms, who retain a central role in advocacy, and give people with intellectual disabilities a social valued role. Under the normalization model, inclusive research projects have been criticized for co-opting disabled researchers into assisting the agenda of service providers (Finkelstein, 1999, as cited in Walmsley, 2001). Human Rights-Based Participatory Research HRBPR builds on the lessons learnt from the other participatory research methodologies and addressing its critiques (Arstein-Kerslake et al., 2020). This methodology uses human rights law to structure the research design and objectives, and the strategies from participatory research to enable participation. Social issues are explored from a rights perspective. Academic neutrality is relinquished and the researcher’s role as an agent of social change is highlighted. The key difference from previous methodologies lies in its use of research as a tool for advocacy and social change because it is based on legally binding human rights instruments and is overtly committed to social justice, the social model of disability and human rights. This methodology engages people with disabilities at all stages of the research. The CRPD provides guidance and a framework to prevent the marginalization of people with disabilities within research and to produce rights-based research in any field (Arstein-Kerslake et al., 2020). It is based on the following principles: ● It is initiated and led by people with disabilities, or through the disability community via direct commissioning, policy documents, dialogue between the disability community and researchers, as a response to findings in research or to findings from the CRPD Committee or the Special Rapporteur on the Rights of Persons with Disabilities. ● It is designed to be led or guided by the disability community, which must hold control or be involved at all stages of the research, from the research question to its dissemination. The involvement can be in the form of ‘research fellows’ or an advisory panel of people with disabilities. Involvement of disabled people based on their experiential expertise must be remunerated. ● It responds to a rights concern of the disability community. This means that the research takes a human rights approach to disability, supports, and enforces the realization. The research should respond to a current, historical or potential rights violation, contribute to social change and empower people with disabilities. ● The research outputs are directly addressed to the rights concerned and are returned to the disability community in an accessible format (Arstein-Kerslake et al., 2020). The protocol set forward by this methodology also includes ethical considerations. Informed consent must be based on full legal capacity in line with the CRPD. This includes providing support and information in accessible formats for participants and allowing for enough time to understand the information. Consent is conceived as an ongoing process and should be facilitated in different formats (Arstein-Kerslake et al., 2020). There is already significant experience conducting participatory research with people with intellectual disabilities around the world (Nind, 2017), with examples from Iceland (Traustadóttir & Johnson, 2000), Ireland (Salmon et al., 2018), the UK (Nind, 2017), Australia (Johnson et al., 2002), China (Yue et al., 2020), Canada (Fudge Schormans et al., 2018) or Spain (Puyalto et al., 2016). Research topics include the right to health (Frankena et al., 2019), the right to independent living (Salmon et al., 2019), needs during the pandemic (Yue et al., 2020), violence experi-

A journey together  39 enced by women with intellectual disabilities, histories of women with disabilities exploring different aspects of their lives, including self-advocacy, parenthood and identity (Traustadóttir & Johnson, 2000), the history of learning disabilities at the Social History of Learning Disability Research Group, Open University, UK, sexuality and relationships (Johnson et al., 2002). All these topics are relevant to social policy, in its conception and implementation. Challenges The benefits of participatory research are nowadays undisputed (Goodley, 2010, p. 27), yet challenges in its use remain. Participatory research requires more time (Cornwall & Jewkes, 1995), is messy and calls for flexibility (Seale et al., 2015). First, ensuring that people with disabilities own and author the research or making sure it leads to effective change (Darretxe et al., 2020; Goodley, 2010) or ensuring that the research questions disablism is difficult. Researchers proposing participatory research need to reflect on who benefits from the research (Darretxe et al., 2020) and if they are effectively relinquishing power (Cornwall & Jewkes, 1995). The literature also warns against making a career out of doing research with people with disabilities (Goodley, 2010). Further, ensuring that the research is inclusive (Goodley, 2010) and accountable to people with disabilities during all phases can also be difficult. In the past, it has been rare to include people with high support needs (Nind, 2014). In general, if the researcher has no prior relationship with people with disabilities, it may prove difficult to reach out to potential co-researchers. In the case of people with intellectual disabilities, this can be particularly difficult due to gatekeeping by organizations and service providers (Nind, 2014). Providing sufficient information and capacitation, if needed, to enable participation, can also be a challenge, especially during the phase of research analysis (Darretxe et al., 2020). It requires both academic researcher and co-researchers to learn from each other, and it is important to continuously question whose knowledge is being considered – the researchers, experts or people with disabilities (Goodley, 2010). Lastly, ethics committees may constitute a barrier by not approving participatory research based on a stigmatized conceptualization of people with disabilities as ‘vulnerable’ and ‘incapable of giving consent’ (Mietola et al., 2017).

5.

USEFUL STRATEGIES TO INCLUDE PEOPLE WITH INTELLECTUAL DISABILITIES IN RESEARCH AND POLICY DESIGN

Participatory research places special value on for whom the research is produced, why and how it is produced (Francés García, 2016). This section will focus on different aspects of how participatory research with people with intellectual disabilities is produced. All duties listed below are initiated by the academic researcher but can be assumed by the participants-researchers (Peralta, 2017). Recruitment People with intellectual disabilities are rarely involved in research or in higher education projects (Nind, 2017). Most people will not be familiar with the academic environment and

40  Research handbook on disability policy requirements. Recruiting people with intellectual disabilities can be tricky depending on the context. Organizations supporting people with intellectual disabilities may act as gatekeepers, or ethics committees with little understanding of disability may impede including people with intellectual disabilities as co-researchers, under the assumption of automatic vulnerability (Arstein-Kerslake et al., 2020). Often, academic researchers tend to fall back to the people they know or with whom they have already collaborated (Puyalto et al., 2016; Walmsley & Johnson, 2003). Most researchers with intellectual disabilities arrive to research through self-advocacy (Yue et al., 2020) or develop this activity further, which can constitute a somewhat privileged group. An ongoing relationship with the disability community, along with the establishment or support of research networks or groups can be very helpful to tackle these barriers, as advocated by the IRN. This contributes to building up trust and being available to explore different research themes. Research centres across the world have created different forms of maintaining ongoing relationships with people with intellectual disabilities, through research networks (IRN), supporting an inclusive research group directly (Universidad de Girona, Spain, or University of Limerick, Ireland) and creating research groups which include people with intellectual disabilities (Social History of Learning Disability Research Group, Open University). Opportunities to engage in research are highly valued by people with intellectual disabilities (Fudge Schormans et al., 2019). Training Training is useful to develop adequate research skills and team building (Strnadová et al., 2014; Walmsley & Johnson, 2003) but has also been criticized for risking losing participants’ unique experience (Nind et al., 2016). Despite this, participatory research has always had an educational component (Francés García, 2016) and the academic researcher is responsible for facilitating a collective learning process (Peralta, 2017). The researcher will need to provide information and decision-making support depending on the participants’ background and experience in advocacy and research. Different academics engaged in participatory research have proposed training programmes to familiarize people with intellectual disabilities with research (Fullana et al., 2017; Nind et al., 2016; Strnadová et al., 2014). Training can include asking an external researcher to deliver the training to present different perspectives and to expand the network. Reflexivity Reflection on the process is fundamental (van de Sande & Schwartz, 2017). The researcher must examine her role, why she is pursuing a research question or a specific point and how her views and position influence the advice, guidance and input she gives. Reflection can help identify whether the researcher is contributing to disablement through paternalistic behaviour. The promotion of reflection is essential to unearth a better understanding of the issue, rather than simply listening to individual voices and experiences (Peralta, 2017). Unquestioned commitment to a particular understanding of disability and disability research can prevent reflexivity, which in turn will affect the possibility of examining who actually controls and defines the research process (Watson, 2020). Therefore, while clarity in the commitment to conduct research with people with disabilities needs to be sought from the beginning,

A journey together  41 including under which area and framework, academic researchers need to be aware that the struggle may be personal and collective. Reflexivity contributes to making sense of collective reality and personal reality and identifies whether the researcher is pushing a specific agenda when she structures participation in certain ways. Reflection also allows the space to learn from failure (Boman & Yeo, 2020). Participatory research is challenging, as tasks go beyond traditional research skills, e.g. group facilitation, promotion of participation or ensuring accessibility. Negative experiences can become a hindrance in a participatory research project and need to be addressed adequately. Exchange with other researchers or critical friends as well as self-reflective activities aid the process of making a negative experience into a learning opportunity and re-framing the experience (Boman & Yeo, 2020). Structuring Participation The role of the expert changes in the process of research in a participatory project, which assumes the role of a facilitator (Francés García, 2016; Peralta, 2017). The academic researcher has the task of coordinating the research, facilitating the dialogue and encouraging participation (Peralta, 2017). The use of methods and techniques needs to be adapted to the participants, and each action should have a clear purpose, rather than a sequence of methodological requirements that may seem meaningless to the participants (Francés García, 2016). HRBPR includes the requirements of accessibility and to facilitate decision-making processes, by ensuring that information is always available, and that the person gets support to engage and decide. The academic researcher must reflect on what accommodation to provide, and how to facilitate the options for people to engage with their preferred form of support. This can be negotiated at the beginning of the project and adjusted when needed. It includes using clear communication strategies, such as visual aids, structured participation through different dynamics and opportunities, feedback forms, easy-to-read information or video recordings. One of the criticisms of participatory research is the claim that by surrendering the power to people with disabilities, the researcher turns into a support person. However, while the researcher may assume accessibility and facilitation duties, she does not necessarily become a person’s or a group’s support person. Power is also retained in more subtle ways. Reflexivity on the purpose of the researcher’s actions and flexibility is needed, as the role of the academic researcher is renegotiated throughout the research process to adapt to the participants’ research needs. While research methodologies often focus on what needs to be done, research also has a substantial aspect of reflection, which constitutes part of the privilege academics hold. Researchers need to create spaces for individual and shared deliberation, within a debate, through explorative questions, orally, in writing or through drawings. Schematic summaries also support following the thought process. Participants arrive at the project and each meeting with different backgrounds, personal situations and readiness (Boman & Yeo, 2020), and this requires flexibility on behalf of the facilitator and group. Further, one should refrain from rushing to a decision, which may leave participants powerless. There is a lot of value in provisionality, openness and waiting (Boman & Yeo, 2020). Third, the conversations and research process are intense and can become tiring. It is important to create a balance between the structure for participation, breaks and informal conversations. Online collaborative tools and voting systems may facilitate participation.

42  Research handbook on disability policy Control over the Process The academic researcher may assume a major role of facilitation, which can also be done by co-researchers. In any case, it is important to provide information throughout the project on what has been done, next steps and what to expect. Second, a continuous request for feedback and letting the group or certain co-researchers decide or take the lead enables co-researchers to feel comfortable contradicting the academic researcher. In my case, this was particularly important during the analysis phase, where I perceived a major risk of imposing my interpretation of the data. Time Management Time management can be challenging in research projects and must be planned. In my experience, self-advocates are often committed to many projects, and it can be difficult to allocate a good time for all participants. It is also important to allocate time for all parties, co-researchers and academic researchers during the project to process information, debrief, reflect and become creative (Boman & Yeo, 2020). One also needs to include time for breaks, to connect or simply have an informal conversation, which builds the bonds to work together over a longer period. Access to Knowledge and Networking The activity of researching itself is a continuous exposure to different sources of knowledge, through lectures, trainings, conferences, books and journals and exchanges with other researchers. It is important to facilitate access to these sources through open access publications, easy-to-read versions, videos or summary presentations. Further, research and academia include exchange with other researchers through conferences, collaborations or informal gatherings. The need to create networks has been highlighted above. Participatory research projects need to think about how they wish to disseminate their study but also how can they facilitate exchange with other disabled researchers.

6.

CASE STUDY OF PARTICIPATORY RESEARCH IN SOCIAL POLICY WITH PEOPLE WITH INTELLECTUAL DISABILITIES IN MADRID, SPAIN

As part of an ongoing project, I work together with seven co-researchers with intellectual disabilities, following the guidelines of HRBPR. This project is part of the Disability Advocacy Research in Europe project, funded by the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 814249. Recruitment was done via an inverted job offer, an idea from Clíona de Bhaílis. The inverted job offer was an offer for people with disabilities to use my services as researcher to conduct a small research project within the framework of the CRPD in Spain under their terms as ‘employers’. Those hiring me would not have to bear any costs and would be remunerated for doing the project with me. Due to the pandemic, the job offer was mainly disseminated via email and online events. I also offered an eight-week training course on research methodolo-

A journey together  43 gies and research in disability studies. Eleven people signed up for the training and the project, of which seven remained throughout the project. Co-researcher Agreement During the first sessions, we established a co-researchers’ agreement, which included working rules, the time commitment, decision-making rules, the co-researchers’ authorship and rules on use of email and WhatsApp. Co-researchers were remunerated in a one-time payment due to administrative limitations. The agreement also explained that I would use the experience for my own research on participatory research methodologies. The agreement also stated that the CRPD would serve as the framework for the research. Most of the co-researchers have received training on the CRPD as self-advocates and to date there is accessible material explaining the CRPD and its implications. The agreement was a tool to guide future conflicts or disagreements, decision-making processes and to be clear on commitment. Constant reminders of the voluntariness of participation were given. When one of the co-researchers left, I refrained from retaining or convincing him otherwise. Training Our project began with an optional training programme, which consisted of eight modules that covered an introduction to social science research and participatory research, different parts of a research process, quantitative and qualitative methodologies, examples of qualitative research, results and analysis, dissemination, ethics and participatory research methodologies. Each session began with a presentation with examples and ended with questions to be discussed. The duration was an hour and a half. Examples were drawn from disability studies and Spanish research studies. External researchers were invited to present their own research and methodology. Throughout the project, ad hoc training or background information was provided whenever needed. The training sessions were blended with discussions on rights and the situation of people with intellectual disabilities. Development The group chose to explore the impact of the pandemic and the restrictions on people with intellectual disabilities, out of concern for their peers’ wellbeing. The project focuses on the impact in daily life, including loss of routine, exercise and lack of access to new technologies. The findings included an increased fear to resume normal life experienced by their peers, isolation, a lack of choice on where to live or with whom to stay during lockdown and increased control and overprotection. We arranged two exchange experiences with other disabled researchers. After these encounters, the group expressed the wish to engage in further research and this led to an invitation to participate in other research projects and to publish a chapter. Further, the desire to meet again and organize more exchanges was expressed from both sides. Project Background The project took place in Spain and started during a strict lockdown during the COVID-19 pandemic. One of the limitations of the project was that only people who had acquired

44  Research handbook on disability policy (recently or before the pandemic) digital skills could effectively join. In Spain, most research around the impact of COVID-19 has been done from a service provider perspective or by academic researchers with limited input of civil society (García et al., 2021). In contrast, the co-researched project placed the focus on how people had experienced the lockdown, how it had impacted their personal relationships (e.g. not seeing loved ones in over a year) and how they had been subject to additional restrictions and fewer opportunities. As stated above, a triangulation between studies delivered a more nuanced picture of the impact of the pandemic on the lives of people with disabilities. None of the previous studies had reflected on the impact on the right to independent living and in the community, or around policies to reduce the high fear induced in people with intellectual disabilities. Reflexion I kept a journal on the research process, which I wrote after the sessions and exchanges with participants. We held three reflective sessions on what was working and what was not. I tracked tensions, questions that came up and how it matched my intention to become an ally. I explored the reasons that pushed me to argue for certain points, or how I felt when participants ignored what I said, or when a discussion got out of hand and I felt I failed. Journaling and shared discussion helped me to distance myself from feelings of guilt and impotence. Collective reflection was aided with visual schemes and small group debates that were then shared in the wider group. In this online co-research experience, I learned that it is necessary to reduce intensity towards the end of the session, and to leave space and time for debriefing. While in-person meetings usually allow for a more natural transition, online meetings can end quite abruptly. We started our meetings catching up and ended with a short summary, which is emailed afterwards in the form of a presentation as well.

7. CONCLUSIONS My research project aimed to show that human rights-based participatory research can produce valuable evidence to inform social policy and map how it can be done. The project provided evidence on working remotely and how there is a gap between how disability is conceived within social policy and the CRPD, and the preferences of people with disabilities. Our work together produced evidence on how COVID-19 had affected people with intellectual disabilities in Madrid. In contrast with other research on the impact of COVID-19, our research brought out a different view on lockdown and the realities of people with disabilities. While much of the literature review focused on the impact on service provision and lack of sufficient protection of disabled lives by states, our research showed a violation of the right to independent living and increased surveillance and overprotection. Participatory research places as much value on the process as on the outcome of the research and HRBPR contributes to creating a fairer and human rights-compliant research process. My co-researchers have expressed repeatedly a desire to continue doing research, and during our launch event some attendees also expressed the wish to have future opportunities to engage in research. They especially valued the work, getting paid and talking to other disabled people about topics they found important. We keep in touch to discuss how my work is advancing and

A journey together  45 to explore new dissemination avenues and collaboration opportunities. Participatory research provides an excellent avenue to involve people with disabilities in the conversation on how to create change in social policy and advance the implementation of the CRPD. These collaborations are immense learning opportunities for all sides, and people with disabilities must be involved in all conversations about them and lead the change. Co-production is being increasingly recognized by the research community and policy makers within social policy and disability studies. Experiential knowledge benefits from situated and value-laden knowledge, which is much needed to solve complex social policy issues. The participation of people with intellectual disabilities in research has increased around the world, as well as knowledge on participatory methodologies. While challenges remain, there are more tools to address these and more experiences to learn and expand participatory research. Participation can be shaped in different forms and intensities and adapted to different projects and funders. It produces practical and revealing inputs and outputs, which fuel the energy of researchers, but it also requires effort and courage on behalf of researchers and co-researchers. Researchers with intellectual disabilities are needed in social policy research to identify and tackle invisible barriers, ableism in policy design and implementation in line with the CRPD. The unique perspective and knowledge brought by co-researchers with disabilities can contribute to leading social policy towards a much-needed rights perspective. The exclusion of people with disabilities from research and mainstream social policies perpetuates their marginalization and violates their human rights. Participatory research is not only an effective methodology to produce relevant knowledge and change, but also an ethical commitment and stands for full recognition of the people with disabilities as upheld and promoted by the CRPD.

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4. Accessibility policies in Brazil: negotiating collective access through the principles of Disability Justice for a Brazilian Center for Disability Studies Marivete Gesser and Anahí Guedes de Mello

INTRODUCTION Legislation in Brazil aimed at guaranteeing the rights of people with disabilities is very broad. In the 1980s, people with disabilities participated actively in the Constituent Assembly, managing to include disability in a transversal way in general legislation for health, education, labor, and social protection within the 1988 Constitution of the Federative Republic of Brazil. This inclusion enabled the creation of decrees and specific laws aimed at ensuring the access and participation of people with disabilities in all public spaces, including in events or gatherings of a scientific, political, and cultural nature. Prominent in this legislation are Law 10,098/20001 and Decree 5,296/2004,2 which introduced into the Brazilian legal system the principle of the inalienable right of access and participation of people with disabilities in all public spaces. Both legal provisions emphasize that this access must be provided, including for events or gatherings of a scientific, political, and cultural nature. However, these legal instruments did not have the same effect for the guarantee of accessibility as the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD was the first and, until then, only international human rights treaty to be incorporated into Brazilian law with the status of a constitutional amendment, being added to the 1988 Constitution through Legislative Decree 186/2008.3 As a result, all legislation that preceded the CRPD had to be modified to adapt to what it stipulated. In addition, the constitutional status of the CRPD means that it has become an ‘indelible clause’, meaning that the rights it provides for can only be removed or changed through the approval of a new constitution, and cannot be challenged by any other legal instrument, not even constitutional amendments. This means that in Brazil individuals can use the CRPD to sue federal, state, and municipal governments. Therefore, in Brazil the CRPD has ‘the force of law’, in the sense that it has no precedents in Brazilian legislation. With immediate effect on the constitutional hierarchy, the CRPD stands above any and all Brazilian legislation related to people with disabilities. In 2015, in order to create provisions aimed at implementing the CRPD, Brazil passed the Brazilian Law on the Inclusion of People with Disabilities – (BLI) (Law N. 13,146, of July 6, 2015). The Brazilian body of legislation is characterized, in legal terms, as one of the most advanced in the world in terms of the rights of people with disabilities (Maior, 2017). All this legislation is strongly driven to remove the many social barriers to ensure the accessibility and participation of people with disabilities on equal terms with other people. However, the structural ableism that hinders its implementation, which in the CRPD is defined by the expression ‘barriers due to attitudes’ or ‘attitudinal barriers’, as well as the unique character of the accom49

50  Research handbook on disability policy modations necessary to meet the requirements of multiple corporalities and sensorialities mean the legislation does not assure a priori the social participation of people with disabilities in different social contexts. This chapter aims to present the contributions of the Center for Disability Studies (NED – Núcleo de Estudos da Deficiência) of the Federal University of Santa Catarina (UFSC), a public university based in southern Brazil, to the field of accessibility in academic and political events. Therefore, after the presentation of a personal account by the second author and a brief description of NED, we highlight the activities encompassed in the following areas: (a) the production of training and guidance materials aimed at public policy professionals; (b) the orientation provided to scientific events to ensure accessibility for people with multiple sensorialities and corporalities; and (c) networking and cooperation at national and international levels to develop theoretical discussions and delineate political strategies. The approach focuses on the articulation between the macro-political (laws, decrees, and sectorial policies) and the micro-political levels (actions aimed at implementing these policies in specific contexts). We start from the assumption that the effectiveness of collective access, beyond constitutional rules regarding rights and the indications specified in accessibility manuals, must incorporate an approach that has relationality and intersectionality as its ethical principle. This is necessary because people with disabilities have multiple corporalities and sensorialities and, therefore, may have different needs and preferences among themselves – even within the same disability. Thus, we consider that this approach demands both the incorporation of systematized knowledge of accessibility and Universal Design as well as attention to the specific demands of each individual, with and without disabilities. Hence, the implementation of accessibility in physical and virtual spaces needs to be built by talking to people with disabilities and to representatives from other social groups which, for some reason, also need to be accommodated. This strategy is fundamental to ensuring the social participation of all people, in a broad and general way. In the next section, we will present the chapter’s conceptual framework, which covers: (a) a brief section on Disability Justice and how it differs from the ‘disability rights’ perspective, in which the social model of disability is embedded; (b) the concepts of intersectionality, interdependence, and their relations to the subjective dimension, which must be considered to ensure access; and (c) the conceptualization of collective access. Next, a brief personal account by one of the authors will be presented regarding her activism from the perspective of Disability Justice. Afterwards, the UFSC Center for Disability Studies will be introduced, followed by a description of its activities. Lastly, we have the final considerations section, in which some effects of the work and the political challenges are analyzed.

FRAMEWORK Disability Justice Disability Justice grew out of disability activism being first conceived by lesbian (or bisexual or trans) women of color with disabilities, Patty Berne and Mia Mingus, in the San Francisco Bay Area. They were later joined by Leroy Moore, Stacey Milbern, Eli Clare, and Sebastian Margaret. The pioneers were mostly artists linked to a collective called Sins Invalid. This is

Accessibility policies in Brazil  51 a performance project led by disabled people of color that addresses issues such as sexuality, embodiment, and the disabled body. The creators of Disability Justice recognized the advances that the disability rights movement had brought in terms of securing rights for people with disabilities. However, they did not feel represented by this movement that was white and heteronormative, and hardly challenged racist, ableist, and cisheterosexist social structures (Mello et al., 2021; Piepzna-Samarasinha, 2018). There was also a strong questioning regarding the disability rights movement’s focus being solely directed at the category of disability, overlooking other axes of oppression such as race, gender, sexuality, age, immigration status, and religion that are constitutive of corporalities (Piepzna-Samarasinha, 2018; Sins Invalid, 2019). Another criticism that Disability Justice has made of the disability rights movement is that as a result of being heavily led by white people, this movement has ceased to consider whiteness as a privilege. Sins Invalid (2019, p. 15) points out that at its core, the disability rights framework, which was conceived from the Disability Rights Movement, ‘centers people who can achieve status, power and access through a legal or rights-based framework, which we know is not possible for many disabled people, or appropriate for all situations’. In this vein, the considerations of Mingus (2018) and Sins Invalid (2019) highlight that ableist supremacy, white supremacy, cisheteropatriarchy, colonialism, and capitalism work together to oppress people marked by these multiple intersections. Piepzna-Samarasinha (2018, p. 23) highlights that because of this intersection between these oppressive systems, ‘our focus is less on legislation as the only solution to ableism and more on a vision of liberation that understands that the state was built on racism, colonialist ableism and will not save us because it was created to kill us’. As such, it becomes critical that perspectives on disability incorporate these multiple intersections in order to understand this phenomenon so that bodies marked by these aforementioned systems of oppression can move together without leaving anyone behind. Seeking to embrace the multiplicity of people with disabilities, Berne et al. (2018), define Disability Justice using ten key principles. They are: (1) intersectionality; (2) leadership by those most affected; (3) anti-capitalism; (4) solidarity across different activist causes and movements; (5) recognizing people as whole people; (6) sustainability; (7) solidarity across different disabilities; (8) interdependence; (9) collective access; and (10) collective liberation. All these principles are considered fundamental by Disability Justice activists in building an accessibility that welcomes multiple corporalities and sensorialities. The principles of Disability Justice contribute to broaden what we define as human rights. In this way, they move from perceiving the human as an abstract, generic, de-racialized, and disembodied being to include multiple corporalities and sensorialities. This will be the object of the next section. Disability Justice Broadening the Comprehension of Human Rights As already stated, to ensure human rights, it is crucial that perspectives on disability incorporate the multiple intersections so that they are understood (Mingus, 2018; Sins Invalid, 2019). We also take the view that there is a need to disengage from the normative framings produced by the aforementioned oppressive systems to enable people traversed by different intersections to feel entitled to claim collective access. Disability Justice contributes towards expanding discussions on human rights to guarantee the participation of people with disabilities who diverge

52  Research handbook on disability policy from a universal ideal of human being, represented by the white, heterosexual, cis male, from the global north, who is rich, totally independent, and not disabled. Intersectionality is a conceptual tool that emerged from Black feminism and aims to make visible the intersectionality of gender issues with those of race, sexuality, social class, and other forms of discrimination. According to Crenshaw (2002, p. 177), intersectionality ‘deals specifically with the ways in which racism, patriarchy, class oppression, and other discriminatory systems create basic inequalities that structure the relative positions of women, races, ethnicities, classes, among others’. The intersectional perspective is fundamental to the field of human rights, since these have been repeatedly violated by the intersection of oppressive and colonial processes such as sexism, racism, ableism, classism, ageism, and LGBTI phobia, for example. According to Butler’s thinking (2009), we may assert that the intersection of these systems of oppression tends to have the effect of framing people as less human and even as inhumanly unthinkable, leading to implications in recognizing them as more or less worthy of access to quality public and social policies and effective social participation. Interdependence, one of the principles of Disability Justice, demands a break from the liberal approach to human rights, which, as already mentioned, is based on the notion of a universal subject. In this sense, inspired by the perspective of the ethics of care (Kittay, 2015), we propose relationality in order to incorporate dependence and interdependence as fundamental to the construction of collective access. This principle, coupled with the intersectionality previously presented, can produce a liberating access, which will be presented in the following topic. Finally, for collective access to be effectively implemented, we must emphasize the importance of considering the subjective dimension of inequality. Ableism and its intersections with other oppressive systems have impacts on subjectivity insofar as it can have the effect of producing the perception that people with disabilities are less worthy of gaining access to legally guaranteed rights (Gesser et al., 2019). Campbell (2009) points out that ableism is internalized through the tactics of dispersion and emulation of the norm. The former cause the perception that disability is a personal tragedy, limited to a body. Emulation, on the other hand, makes people with disabilities feel the need to reproduce the compulsory ability instead of, for example, fighting for the elimination of barriers. When these subjects are also marked by other oppressive systems that historically delegitimize certain groups and privilege others, the intersubjective relations established in the various social contexts can produce the effect that they are deemed less worthy of rights with regard to others, and they themselves then appropriate this condition and begin to emulate the norm. In this line, Sawaia (1994), an important Latin American author, recommends that the subjective dimension be incorporated in the practices that aim to guarantee rights and the exercise of citizenship. The author emphasizes that ‘citizenship is awareness of equal rights, but this awareness is not only consisted of knowledge of legislation and access to justice. It requires feeling equal to others, with the same equal rights’ (Sawaia, 1994, p. 152). In the next section, we discuss the concept of collective access and its relationship to the other principles of Disability Justice, emphasizing its relationship to intersectionality, interdependence, and collective liberation.

Accessibility policies in Brazil  53 Collective Access is Disability Justice We understand that the construction of a subject who feels they have the right to partake demands the deconstruction of ableist frameworks that historically marginalize and exclude Black people, poor people, women, the elderly population, LGBTI+ people, and people with disabilities. As highlighted by Campbell (2009) and Taylor (2017), it demands a critical position concerning the biomedical model of disability that, when categorizing certain bodies as physically or mentally ill and less able and having the compulsory mandate of the narratives of cure as the only possibility of existing in a dignified way, depoliticizes the struggle for the rights to accessibility already provided for in Brazilian legislation. Collective access arises from Disability Justice activism and produces cracks and ripples in the perspective of Universal Design (UD)4 through the incorporation of the intersectional and political perspective (Hamraie, 2013, 2017), which is justified based on the argument that no body or mind is left behind (Berne et al., 2018). This way, without denying the contributions from UD for amplifying participation of people with bodily variations, collective access has extended UD, showing that it is necessary but not enough to include all people based on their multiple intersections with gender, race, ethnicity, regionalism, queerness, age, and poverty, which intensify oppression and hamper access and social participation. Furthermore, based on what researchers and activists linked to the Center for Disability Studies have thought in Brazil, collective access criticizes the non-relational character of UD, since even though all the resources aimed at assuring the participation of people with disabilities are offered, it is still important to maintain dependency relationships and interdependence. For example, Böck et al. (2020) defend the premise that the Universal Design of Learning incorporates the ethics of care, as the first author’s doctoral study (Böck, 2019) showed that although the offer of resources is not always enough to guarantee access, it is necessary to observe and consider the relationships of dependence and interdependence. Another study, by Muccini (2017), with D/deaf/blind people, showed that this group of people uses eight different ways to access knowledge, which also reasserts the perspective of collective access being broad, in order to ensure access to knowledge. Another highlight is the accessibility counter-manual prepared by the Disability and Accessibility Committee of the Brazilian Anthropological Association. With the collaboration of the second author of this article, the counter-manual reasserts the results of this research, highlighting that all people benefit from practices that contemplate multiple corporalities and sensorialities. After all, ‘we learn in different ways that some have greater ease of understanding and imagery memory, others have a keen hearing for details and tones; some need writing to understand an argument, others have access to images through descriptions’ (Mello et al., 2020, p. 6). Hence, we understand that Mingus (2018) proposes liberatory access for multiple corporalities and sensorialities because: It is not enough to just make sure that we can get into the room or that the conversation is translated or that we can access the materials. And it is not enough for us to simply get to share what’s important to us (though I know that many times we don’t even get to share that), if no one knows how to hold what we are sharing; if no one knows how to understand and fully engage with what we are sharing.

Furthermore, Mingus (2017) highlights that this full involvement can be developed when seeking to cultivate access intimacy, which means the subject is part of spaces and fully involved in them. Therefore, it is necessary to challenge the ableism and historical isolation

54  Research handbook on disability policy experienced by people with disabilities, especially those who are part of other oppressed communities. Thus, access intimacy is interdependence in action, which implies calling on people without disabilities to inhabit the world of people with disabilities. Valuing people with disabilities for what they can do and offer, as opposed to the dominant narratives that place them as a burden, is also an important element to be considered. To end this part, we assume that practices based on collective access should incorporate macro-political and micro-political levels of action. The first refers to the laws, rules, and regulations that assure access from a legal point of view, which is undoubtedly fundamental for the guarantee of rights, although it does not operate sufficiently. The second implies concrete actions guided by a human rights perspective that goes beyond the legal scope of guaranteeing access, producing effects concerning the legitimacy of subjects, individuals historically excluded by the intersection of systems of oppression. This approach considers that access should not be placed as an individual demand, punctual and limited to disabled bodies (Mello et al., 2020), but within a paradigm that considers ‘a broader definition of accessibility, based on the idea of justice of disability’ (Mingus, 2010), contributing to the subject feeling with the right to participate. Inspired by the authors above, we understand that accessibility is more than standardization; it is also a mediation device (Alves & Moraes, 2018). That is, as much as the legislation indicates a series of important regulations and legal provisions for the promotion of accessibility, we cannot reduce it to a ready-made package in which the people with disabilities must take it or leave it, since, depending on the existence of multiple corporalities and sensorialities, in practice, the access involves negotiation between the parties. Based on these assumptions, the Center for Disability Studies has sought to reinvent its practices, increasingly incorporating the dialogue with individuals who demand accommodation to have their right to participate guaranteed and valued.

ACCESSIBILITY AS A POLITICAL DEMAND AND THEORETICAL CONTRIBUTION: ANAHÍ’S ACCOUNT My academic trajectory has always been under the strong influence of ‘militant capital’ or, in the terms of Bourdieu (1986), a social capital5 marked by a great insertion, since youth, in social movements for the rights of people with disabilities, especially those women with disabilities and LGBTI+ people with disabilities. Thus, I engaged as an activist in important national and international events, aimed at training and engaging in the construction of public policies for people with disabilities, especially those based on issues of accessibility, gender, and sexualities. As a result of this position within political activism, I started doing ‘engaged anthropology’ (Kirsch, 2010; Low, 2011) in the fields of feminist studies of disability and disability anthropology, with research results published in book chapters and articles in reference journals in the fields of anthropology and gender studies in Brazil. In 2004 I cooperated in the foundation of the Center of Independent Living of Florianópolis (CIL-Floripa), the first in the State of Santa Catarina, in southern Brazil, having been its first president in two consecutive terms (2004–2006 and 2006–2008), making me the first deaf person to officially join the Brazilian Independent Living Movement. This position allowed me the experience of engaging, invited by the federal government under Lula’s first term (2003–2006), in an important working group on ‘sensory disability and technical assistance’, bringing the demands of deaf people who do not communicate in Brazilian sign language. My

Accessibility policies in Brazil  55 collaborative participation resulted in contributions inserted in a broader document that would later come to be known as Decree 5,296/2004. It was at this moment that I made an impact on the political scene, engaging in the field of accessibility. I went through numerous activism sets at different times in my career, first in Deaf and Hard of Hearing Activism in 1992, but this experience was more focused on meeting points with Deaf people who use Brazilian sign language, through the practice of sports such as soccer and volleyball, including trips to championships in other states and municipalities in the interior of Santa Catarina. This phase was one of engagement in Deaf spaces of sociability that, conclusively, ended up forging in me a political identity as a deaf outsider, in which I was often asked by Deaf peers to mediate their communication with listeners since I was considered ‘the only oral deaf person’ in the group. Later, in 1998, as a Chemistry undergraduate student at the Federal University of Santa Catarina, I became more involved in disability activism, with greater insertion and political action when I moved from Chemistry to Social Sciences in 2005, at the same university. This second phase of activism was the growing moment of claiming the desire to be recognized and respected as a deaf person who is not a sign language user, with different needs and preferences for access to communication, this being the first flag I raised and with which I excelled in disability activism. Currently, I’m part of feminist lesbian activism, guiding the intersection between disability and lesbianity, without ceasing to claim and guarantee my access to communication within the spaces of lesbian activism. The right to accessibility for persons with disabilities has been assured in Brazilian public policy for many years, with the legal provisions starting to address the issue of accessibility more specifically from the aforementioned Law No. 10,098, published in 2000 and known as the ‘law of accessibility’. However, this law was only regulated in 2004, through Decree No. 5,296. Before the publication of this decree, there was no explicit recognition of the existence of diversity among people with the same disability. The aforementioned decree innovated by emphasizing the recognition of the existence of deaf people who do not communicate using Brazilian sign language and by relating human support and different technologies that are used as enablers for accessing information. Another example was my participation in the first group that in 2005 formed Study Commission No. 3 (CE-03) of the Brazilian Association of Technical Standards (ABNT), which was to be responsible for drafting Brazilian technical standards on accessibility in communication. On that occasion I represented two institutions, the Accessibility and Technologies research group from the Remote Experimentation Laboratory (RExLab) at UFSC and CIL-Floripa, beginning the involvement that resulted in the publication, on October 31, 2005, of the first edition of Brazilian technical norm ABNT NBR 15290:2005 Accessibility in Television Communication. Currently, NBR 15290 is in its second edition, revised in December 2016 under the code ‘ABNT NBR 1520:2016 Accessibility in Communication on Television’. This standard provides general guidelines for the insertion of subtitling, audio description, a Brazilian sign language window, and an emergency alert system for accessibility in television communication, within the best Universal Design practices and always considering the different conditions of perception and cognition, with or without the help of an assistive system or another that complements the individual needs of deaf and hard of hearing people, blind people, people with low vision, and people with cognitive disabilities. Moreover, another milestone, in March 2012, was the creation of and participation in the Brazilian Anthropological Association Disability and Accessibility Committee, in order to

56  Research handbook on disability policy develop actions both in the direction of strengthening and consolidating Anthropology of Disability as a field of research and to promote a culture of access in the academic and anthropological community as a whole, through the expansion of the use of technical and normative resources and the incorporation of accessibility practices in classes, lectures, conferences, and other academic events, virtual and in person. Other Brazilian academic events that innovated on the theme of disability and accessibility were the 10th and 11th International Seminars on Doing Gender (Fazendo Gênero), in 2013 and 2017 respectively. These were considered to be the most important events in the field of feminist and gender studies in Brazil, always held in Florianopolis. From the understanding of the transversality of disability that implies the emergence of guidelines and demands for accessibility resources for people with disabilities, not only in government gender policies but also in a joint effort to promote and root the principles of accessibility in theory and Brazilian feminist practice, the Accessibility Commission was created under my coordination. The Accessibility Committee of the 10th and 11th International Seminars on Doing Gender was responsible for pedagogically inferring actions involving the implementation of accessibility for students and researchers with disabilities in the area of feminist and gender studies in Brazil. However, as a result of constant learning, based on mistakes and successes, which contributed a lot to my improvement in the development and implementation of micro-policies and access practices, over time I realized that at that time the approach to accessibility adopted for both events of Doing Gender was wrong. The reason for this is because my team was offering accessibility according to the demands by type of disability, instead of focusing on barriers, encompassing practices of access and inclusion to various corporalities and ways of being in the world. This experience showed that putting accessibility into practice is always a daily and contextual exercise, because we tend to choose what is more convenient to solve, which is to think of accessibility only as standardization, and not as a mediation. In Psychology, the perspective of institutional analysis calls this ‘over-implication’ (Coimbra & Nascimento, 2007), highlighting how the accumulation of tasks, and even activism in some situations, can produce a political emptying of our actions, hence the importance of analyzing the implication, in order to avoid this emptying. Given the importance of the subjectivity of the disability experience, what does ‘feeling equal’ in dignity, rights, and duties imply? It also implies the subjective potency of incarnated experience to say ‘what’s missing?’ and ‘what is not working?’ A point that deserves reflection is my tendency to simultaneously embody two styles of leadership, in an engagement that involves the way I articulate academia and activism: the power of expertise, that is, the use of theoretical knowledge in militant action; and the referent power, in the sense of being a reference for the activist-academic experience for others. In my perspective, there are three major and most immediate difficulties in the construction of accessibility practices and inclusion of people with disabilities in various environments: first, much of the knowledge that is produced about and for this group remains on paper, not being translated in concrete actions and mentality changes. This situation becomes more serious when it comes to people with the same disability, but with different needs and preferences. Second, when the solution for the inclusion or, at least, for the adaptation of spaces, services, contents, and teaching methodologies in each specific case is the incorporation of assistive technology, this often ends up adding two rather complicated attitudinal barriers to overcome: the first is that referring to the lack of knowledge of the potential of the person who requires reasonable placements, and the second is the loss related to the lack of knowledge about the use of technology itself and how many

Accessibility policies in Brazil  57 doors are open to it. These are two very powerful attitudinal barriers. The third difficulty is the high economic cost of this technology.

CENTER FOR DISABILITY STUDIES AT UFSC The Center for Disability Studies (NED – Núcleo de Estudos da Deficiência) of the Federal University of Santa Catarina (UFSC) is linked to the Graduate Program in Psychology at the same University. NED was officially founded in the year 2008 by Prof. Dr. Adriano Henrique Nuernberg and Anahí Guedes de Mello, then a student of Social Sciences. Both authors of this chapter have been present since the foundation. The first author, Marivete Gesser, who currently coordinates the NED, was a doctoral student at the NED, and the second author, Anahí, contributed to the construction of the Center proposal, especially with the incorporation field discussions related to Feminist Disability Studies. The NED currently brings together people with and without disabilities, who are researchers from different areas of knowledge, as well as undergraduate and postgraduate students from several universities in Brazil, professionals who work in public policies for education, health, and social work, involved in teaching activities and research and extension projects. The objective of the NED is to promote teaching, research, and extension activities in the field of disability based on an interdisciplinary perspective aiming to produce, together with people with disabilities, knowledge and practices aimed at qualifying public policies and expanding the participation of people with disabilities in society, as recommended by official documents such as the Convention on the Rights of Persons with Disabilities and the Brazilian Law for the Inclusion of People with Disabilities. Thus, the NED seeks, based on the emancipatory perspective of disability, to bring people with disabilities into the university in all the actions developed, so that they can take ownership of discussions in the field of Disability Studies and take them to the community and political activism contexts where they are inserted. In addition to building actions based on what is recommended by the CRPD and Brazilian Law on the Inclusion of People with Disabilities, the NED has also been in dialogue with the field of Disability Studies. This dialogue was initiated by the NED with the social model of disability, a paradigm that has greatly contributed to removing disability from the field of tragedy and charity and placing it in the field of human rights. Aiming to broaden NED’s analysis of the experience of disability and its intersections, nowadays we have dialogue with Critical Disability Studies, especially with Disability Justice and crip theory. Regarding the dialogues with crip theory (Kafer, 2013; McRuer, 2018), it has offered valuable contributions to crip times, spaces, and ways of relating to people with multiple corporalities and sensorialities, since it decolonizes the rigidity of these notions. Focusing on producing theoretical-conceptual and methodological advances, the NED has sought to develop network actions, seeking dialogue with researchers from other universities in Brazil and research networks in Latin America, the United States, the United Kingdom, and Canada. In this way, we have contributed to the training of other researchers and also, based on the dialogues carried out, expanded debates on topics such as collective access. Concerning teaching activities, the NED offers three disciplines, two for undergraduate and one for graduate programs. All of them, aligned with the field of Disability Studies, have an intersectional and interdisciplinary character, receiving students from all courses at UFSC and

58  Research handbook on disability policy students from other universities. Regarding the research, these tend to focus on the field of public policies and academic activism, seeking to cover the experiences of people with disabilities in their interaction with these policies and with activism. Thus, the NED researchers have strongly circumscribed their research in the field of disability policy, studying themes related to education, health, social assistance, participation in rights councils, and social movements. Regarding extension activities,6 NED has been developing, throughout its history, numerous extension projects and actions. One of the highlights refers to the actions aimed at the inclusion of students with disabilities in higher education and comprised, in addition to the assistance of NED members in the process of creating the Educational Accessibility Coordination at UFSC, actions aimed at welcoming students with disabilities at UFSC and the formation of the academic community for the inclusion of students with disabilities in the university. For this purpose, as one of the actions, the NED produced educational videos to train teachers, students, and technical-administrative staff at UFSC and raise awareness in the community about the inclusion of persons with disabilities. The videos were widely publicized on social networks and have played an important role in bringing Disability Studies to different social contexts in Brazil. Currently, the extension actions carried out by the NED have been integrated into an extension program entitled ‘Public Policies, Human Rights and Educational Practices along with Persons with Disabilities’. This is intended to qualify public policies aimed at persons with disabilities in order to ensure their participation and agency. The actions developed aim at: (a) training professionals from different areas to work with persons with disabilities; (b) the removal of barriers that hinder the social participation of persons with disabilities in different social contexts; (c) the inclusion of students with disabilities at different levels of education; and (d) the production of practices that are in line with Brazilian legislation. As it is not possible, in this chapter, to provide a comprehensive description and analysis of the actions developed and their effects, we chose to describe three types of actions that are related to guaranteeing collective access. Thus, we will address (a) the production of guidance materials aimed at professionals working in public policies; (b) the guidelines provided to scientific events aimed at ensuring accessibility to people with multiple corporalities and sensorialities; and (c) the articulation of national and international networks of professionals with and without disabilities who work collectively to promote and disseminate the collective production of anti-disablism practices. All the actions we have developed are structured with the theoretical assumptions that guide our work (presented above).

DESCRIPTION OF ACTIONS Production of Training and Guidance Materials Aimed at Public Policy Professionals We have produced countless training materials aimed at training for collective access. Here we will highlight two of these materials. The first is the thematic booklet ‘Psychology and People with Disabilities’ which aims to guide psychologists and other professionals working in the field of social policies to build professional practices that are in line with Brazilian legislation related to people’s rights with disabilities and the theoretical conceptions that support the production of this legislation. The material fills a gap in initial training since most Brazilian undergraduate courses have not yet incorporated disability into the curriculum. This material

Accessibility policies in Brazil  59 was also produced online, has free access and has been widely disseminated. Based on ‘feminist disability studies’ (Garland-Thomson, 2005), the thematic section shows the importance of breaching conceptions and practices that situate disability in the body and the people with disability as passive subjects. It highlights the importance of the practices developed in the scope of public policies being guided by collective access and the participation of people with disabilities in the entire process of construction, implementation, or execution and inspection of actions. Furthermore, starting from the understanding that disability is a matter of justice, it highlights the urge to consider the intersections of disability with other systems of oppression and inequality, as well as the multiplicity of corporality concerning dependence and interdependence and needs of care. The main themes addressed were: legislation; disability and intersectionality; challenges of legislation to professional practices in public policies; sexual and reproductive rights; Universal Design of learning and school inclusion. Another example is the book Disability Studies: Anti-ableism and Social Emancipation (Gesser et al., 2020). This book was ideated by people with and without disabilities linked to the NED, aiming to integrate the knowledge learned and personal experiences in a book aimed at enhancing anti-ableist struggles. Nine authors who contributed chapters are people with disabilities (one-third of the total number of authors), seeking to value both the synthesis and collective learning as well as the unique experiences of people with disabilities. In addition to the materials described above, the center has also produced videos, newsletters, and other materials that have been disseminated on different social networks. In addition to these two materials described above, we have also produced other research and materials already mentioned earlier in the chapter, such as the research by Patrícia Muccini with deafblind students, the studies by Geisa Böck and collaborators and the accessibility counter-manual. We understand that the production of knowledge with free access is one of the fundamental elements for the theoretical advances in the field to be widely disseminated. Guidance Provided to Scientific Events Aimed at Ensuring Accessibility to People with Multiple Corporalities and Sensorialities In addition to the two editions of the International Seminar ‘Doing Gender’, described in the topic of Anahí’s account above, we promote study groups, and initial and continuing education in disability and accessibility studies to event monitors, teachers, and students. We also held the 1st and 2nd Santa Catarina Psychology and Disability Studies Seminars in partnership with the University and the Regional Council of Psychology of Santa Catarina. In both events, to ensure the implementation of the CRPD and subsequent legislation regarding the right of people with disabilities to engage on equal terms with others, we also implemented an accessibility committee, which was made up of master’s and doctoral students – scholars in the field of Disability Studies – and recruited undergraduate students, who received training focused on the specificities of the participants. Although the NED had already advanced a lot from a theoretical-methodological point of view, the training carried out at the first event, in 2017, still aimed to inform which resources are needed by which type of disability, not emphasizing the importance of building collective access in partnership with people with disabilities. Thus, the participant filled in the registration form, in which there was a field where s/he indicated if s/he had some disability, and a blank field to describe the type of disability. So, based on the information made available, the Accessibility Committee sought to implement actions to accommodate the participant, but still without a concern to maintain a dialogue in order to

60  Research handbook on disability policy obtain more information about the construction of strategies aimed at the specificities of the condition of the participants. In 2019, based on the suggestions we received from people who benefited from our work at the first event, we improved the form, making it clearer that it was necessary to describe what type of placement the person needed to participate on equal terms with other people. In addition, the Accessibility Committee contacted some participants to obtain additional details about the features requested in the application form. Concerning training, based on an analysis of the work carried out in the previous event, we sought to build access with participants with disabilities, and the training provided to event monitors was initiated by bringing up the premise that people with the same disability may have different needs and preferences. In order to guarantee the participation of people with disabilities, we created a booklet aimed at training monitors, which highlighted the importance of promoting the participation of people with disabilities in choosing the resources and assistance they need. Articulation in National and International Networks Proposing to expand and spread the perspective of collective access as a right beyond the NED, as well as to strengthen it considering the intersectional dimension of human rights, we have sought to act in a network. Thus, we have partnerships with researchers linked to several Brazilian Universities (the University of São Paulo, the University of Brasília, Fluminense Federal University, the University of the State of Santa Catarina, Federal Institute of Santa Catarina). We have also invested in international networks with a decolonial perspective of knowledge production. Among these, we would like to highlight Anahí’s participation in Anis: Institute of Bioethics, Human Rights and Gender (Anis – Instituto de Bioética, Direitos Humanos e Gênero) – and the working group Estudios Críticos en Discapacidad of the Latin American Council of Social Sciences (Conselho Latino-americano de Ciências Sociais) (CLACSO). Another important partnership refers to the participation of both authors in a network of Brazilian researchers linked to Western University, in London, Canada, who have discussed disability and collective access. This collaboration has materialized in the organization of events, the provision of a course on Disability Studies to students from both universities, UFSC and Western University, and in the production of promotional materials, such as those mentioned above.

FINAL CONSIDERATIONS The work we have been doing in the field of collective access has shown that there are some political challenges to be faced. The medical model of disability, which places disability as an individual problem, resulting from a deficit or deviation from what is considered the norm, is still dominant in Brazil, as already pointed out by Mello et al. (2014). This produces many challenges for the field of accessibility, since as long as disability is understood as an individual’s problem, it will be difficult for people with disabilities to claim collective access. This is not a mere detail, since the legitimacy of access for people who need it is relational and political, and is in constant tension with the framing of disability that individualizes this experience, in contrast to what is already legitimized by legal provisions such as CRPD and LBI.

Accessibility policies in Brazil  61 Concerning the issue of access, we have realized that there is a need to incorporate a culture of access (Mello et al., 2020), so that people who need it to participate in social spaces feel entitled to claim it. As such, although the encounter with the field of Critical Disability Studies is fundamental, the organizing committees of events also need to anticipate financial resources in their projects to promote accessibility, beyond the provision of reasonable adaptations. Together with the groups of researchers with which we have worked, and from the collective dialogue with our research networks, and also from the reflections that we have built based on critical studies of disability, we have been able to advance in the NED in what we mean by collective access. The initial actions aimed at accessibility were designed by types of disability, although to some extent they already brought dialogue with people with disabilities. Today, we place dialogue with people with disabilities as essential and think of collective access beyond disability, as a practice that will benefit people with multiple corporalities and sensorialities. The results obtained from the activities that have been carried out at NED indicate that Brazilian accessibility policies could advance significantly in the direction of collective access if they incorporate the principles of Disability Justice. The planning of access in conjunction with people with disabilities and other people with specific accommodation needs is also an important element to be incorporated so that the multiplicity of corporalities and sensorialities can be accepted according to their unique characteristics. There is also the need for Disability Justice to be included in the undergraduate and graduate curriculum, as well as in continuing education programs. In this way, policy professionals working in education (at all levels), health, social welfare, and law will be better prepared to develop practices that ensure access to all historically marginalized people. Within the scope of research, it is very important to conduct studies that bring to light the effects of austerity policies, intensified from 2016 onwards, on the access of people with disabilities. It is also essential to conduct research on the effects of the intersection of disability with other social markers of difference, in order to identify how they can impact the access of more vulnerable groups, such as poor, Black, and LGBTI+ people with disabilities. These surveys should be carried out with the participation of people with disabilities, revealing the problems they face in their daily lives with regard to guaranteed access. In this manner, the findings may provide indicators for the improvement of public policies in education, health, and social assistance, considering the specificities of the multiple corporalities and sensorialities. Finally, we want to go back to the initial reflections in the text, highlighting that access, in addition to being a technical issue, needs to be an ethical-political commitment to accepting differences. Crippling times, spaces, and ways of relating is essential to legitimize certain social groups – historically marked by numerous oppressions that cross and constitute bodies that diverge from what is considered the ideal of being human (Kafer, 2013; McRuer, 2018) – in an emancipatory perspective. It is also necessary to crip the look and the ways of relating to difference – whether it is due to a disability, class, race, ethnicity, gender, sexuality, age, or a mixture of all these social markers to, in line with Disability Justice, leave no one behind.

62  Research handbook on disability policy

NOTES 1. 2. 3.

4.

5. 6.

Start of endnote. The aforementioned law was enacted on December 19, 2000, and establishes general norms and basic criteria for the promotion of accessibility for persons with disabilities or reduced mobility, and other measures. End of endnote. Start of endnote. Enacted on December 2, 2004, it regulates Law No. 10,098/2000 above and Law No. 10,048/2000, which gives priority to the care of people with disabilities and elderly people in public services. End of endnote. Start of endnote. According to Article 5, paragraph 3 of the Brazilian Constitution, human rights treaties ratified by Brazil, which acquire constitutional hierarchy, become entrenched clauses and cannot be suppressed even through constitutional amendments. Thus, in Brazil, the principle of accessibility is considered a permanent clause. End of endnote. Start of endnote. According to Brazilian Technical Standard NBR 9050/2015 on Accessibility to buildings, equipment, and the urban environment, Universal Design refers to the creation of products, environments, programs, and services to be used by all people, without the need for adaptation or specific design, including assistive technology resources. End of endnote. Start of endnote. According to Bourdieu (1986), what constitutes social capital are the networks of social relationships, which allow individuals to have access to the resources of other members of their group, network, or social movement. End of endnote. Start of endnote. University extension activities are those aimed at applying the knowledge developed at the university to the community in general. This can be done by means of lectures, courses, advisory services, consultancies, and other specific services. End of endnote.

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Accessibility policies in Brazil  63 and the Global South, 6(2), 1772–1791. https://disabilityglobalsouth.files.wordpress.com/2019/07/06 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _02_05.pdf ​ ​ Gesser, M., Böck, G. L. K., & Lopes, P. H. (Eds.). (2020). Estudos da Deficiência: interseccionalidade, anticapacitismo e emancipação social [Disability studies: Anti-ableism and social emancipation]. CRV. https://doi.org/10.24824/978655868467.1 ​ ​ ​ ​ ​ ​ Hamraie, A. (2013). Designing collective access: A feminist disability theory of universal design. Disability Studies Quarterly, 33(4). https://dsq-sds.org/article/view/3871/3411 ​ ​ ​ ​ ​ ​ ​ Hamraie, A. (2017). Building access: Universal design and the politics of disability. University of Minnesota Press. Kafer, A. (2013). Feminist, queer, crip. Indiana University Press. Kirsch, S. (2010). Experiments in engaged anthropology. Collaborative Anthropologies, 3, 69–80. https://derianga.files.wordpress.com/2010/05/kirsch-collaborative-anthros-experiments-in-engaged ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -anthro-2010.pdf ​ ​ Kittay, E. F. (2015). Centering justice on dependency and recovering freedom. Hypatia, 30(1), 285–291. https://doi.org/10.1111/hypa.12131 ​ ​ ​ ​ ​ ​ Low, S. M. (2011). Claiming space for an engaged anthropology: Spatial inequality and social exclusion. American Anthropologist, 113(3), 389–407. https://doi.org/10.1111/j.1548-1433.2011.01349.x ​ ​ ​ ​ ​​ ​ ​ ​ ​ Maior, I. M. M. de Loureiro. (2017). Movimento político das pessoas com deficiência: reflexões sobre a conquista de direitos [Political movement of people with disabilities: reflections on rights achievements]. Inclusão Social, 10(2), 28–36. http://revista.ibict.br/inclusao/article/view/4029. ​ ​ ​ ​ ​ ​ ​ McRuer, R. (2018). Crip times: Disability, globalization, and resistance. New York University Press. Mello, A. G., Block, P., & Nuernberg, A. H. (2014). Não é o corpo que nos discapacita, mas sim a sociedade: a interdisciplinaridade e o surgimento dos estudos sobre deficiência no Brasil e no mundo [It is not the body that disables us, but society: Interdisciplinarity and the emergence of studies on disability in Brazil and in the world]. In E. Shimanski & F. Cavalcante (Eds.), Pesquisa e extensão: experiências e perspectivas interdisciplinares [Research and extension: Interdisciplinary experiences and perspectives] (pp. 91–118). Editora da UEPG. Mello, A. G., Fietz, H., & Rondon, G. (2021). Entre os ‘direitos das pessoas com deficiência’ e a ‘justiça defiça’: reflexões antropológicas a partir do contexto brasileiro [Between the ‘disability rights movement’ and ‘disability justice’: Anthropological reflections from the Brazilian context] [video]. VII Encontro Nacional de Antropologia do Direito (VII ENADIR). https://www.youtube.com/watch?v= ​ ​ ​ ​ ​ ​ ​ TVPdIWzaS8A. Mello, A. G., Gavério, M. A., von der Weid, O., & Aydos, V. (2020). [Comitê Deficiência e Acessibilidade da Associação Brasileira de Antropologia]. Contracartilha de acessibilidade: reconfigurando o corpo e a sociedade [Accessibility booklet: Reconfiguring the body and society]. ABA; ANPOCS; UERJ; ANIS; CONATUS; NACI: Brasília; São Paulo; Rio de Janeiro. Mingus, M. (2010, August 23). Reflections on an opening: Disability justice and creating collective access in Detroit. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/ ​ ​ ​ ​ 2010/08/23/reflections-on-an-opening-disability-justice-and-creating-collective-access-in-detroit/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Mingus, M. (2017, April 12). Access intimacy, interdependence and disability justice. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/2017/04/12/access-intimacy ​ ​ ​ ​ ​ ​ ​ ​ ​ -interdependence-and-disability-justice/ ​ ​ ​ ​ Mingus, M. (2018, November 3). ‘Disability justice’ is simply another term for love. Leaving Evidence – a blog by Mia Mingus. https://leavingevidence.wordpress.com/2018/11/03/disability-justice-is ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -simply-another-term-for-love/ ​ ​ ​ ​ ​ Muccini, P. (2017). Estudantes com surdocegueira na universidade: mapeando barreiras e facilitadores que perpassam o processo de inclusão acadêmica [Students with deafblindness at the university: Mapping barriers and facilitators that go through the process of academic inclusion]. Dissertation (Master’s in Psychology) – Universidade Federal de Santa Catarina, Florianópolis. Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming disability justice. Arsenal Pulp Press. Sawaia, B. B. (1994). Cidadania, diversidade e comunidade: uma reflexão psicossocial [Citizenship, diversity and community: A psychosocial reflection]. In M. J. P. Spink (Ed.), A cidadania em construção: uma reflexão transdisciplinar [Citizenship under construction: A transdisciplinary reflection] (pp. 147–156). Cortez.

64  Research handbook on disability policy Sins Invalid. (2019). What is disability justice? Adapted from Patty Berne’s ‘Disability justice – a work draft’. In Skin, tooth, and bone: The basis of movement is our people (second edn) (pp. 10–21). sinsinvalid.org. Taylor, S. (2017). Beasts of burden: Animal and disability liberation. The New Press.

5. Narrative 2: Evil: disabled villains in media Em Dewhurst

Disabled people in media are often either non-existent or depicted problematically. Representation is limited to one-dimensional characters, defined only by disability, or the misrepresentation of disabilities as harmful stereotypes. More than that, we seem to only exist as victims, heroes or villains. But what is perhaps the most damaging is that depictions of villainous disabled characters appearing in children’s entertainment are all too common. Characters like Captain Hook, Lord Voldemort and Scar, all disabled villains, tell young people that being disabled is connected to being ‘bad’. Ableism is learned, and this is teaching it. Notably, the key to their villainous ways is often in their physical or highly visible disability. Disabled villains are juxtaposed with morally right, ‘perfect’, non-disabled heroes. Consider Star Wars, where Darth Vader’s disabilities can’t be ignored, with inbuilt assistive technology and supported breathing making him ‘more machine than man’. His son Luke Skywalker’s prosthetic hand is so well designed and identical to his ‘real’ arm that being disabled doesn’t interfere with his heroism. Narratives around disability and villainy extend to portrayals of mental illnesses which are inaccurately and harmfully presented. Real symptoms of these disorders are ignored, with their disabilities being seen as threats to others, defined by violence and unpredictability. Consider Kevin from Split, or the Joker. These representations reinforce the false idea that mentally ill people are dangerous, despite the reality they are more likely to be victims of violence. Making villains disabled allows society to further demonise us, particularly when it falls into specific tropes. A key theme for disabled villains is the idea that disability is inflicted as a result of being evil. This suggests to audiences that disabled people must have done something to deserve a ‘punishment’ of disability. Examine Captain Hook’s hand being cut off by Peter Pan and fed to crocodiles, and Darth Vader’s limb loss becoming permanent once he chooses to join the dark side. Another motif is where disabled people resent being disabled so much that it makes them evil. Disabilities supposedly make them more sinister and intimidating. Disability becomes the motive for their villainous actions, and they will often gain magical abilities or technical skills to be as able-bodied as their opponents. Or instead, their physical disabilities will be overcompensated with ‘evil genius minds’. We see this in Detective Pikachu where Howard Clifford, who is a wheelchair user, replaces his mind with a powerful Pokemon to do his evil bidding. Whilst untangling this dangerous trend isn’t easy, there are some things that audiences can do to try and break it down. You should consider: ● ● ● ●

If disability representation is playing into these harmful tropes? If the media you are consuming has any non-villainous disabled characters? If disabled characters are not just one-dimensional and motivated only by disability? If disability is seen to be something bad and needing to be cured? 65

66  Research handbook on disability policy While it is not possible to fix all harmful disability representation by simply asking these questions, beginning to question the media we consume is an important step in tackling ableism.

6. Developing a participatory indicators-based framework for monitoring disability rights Paula Campos Pinto and Maria Engrácia Cardim

INTRODUCTION The development of indicators to monitor the human rights of people with disabilities, even if not an entirely new project, became paramount with the adoption in 2006 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The CRPD subtly reformulates and extends existing human rights to consider the specific rights experience of persons with disability. It also embraces a definition of disability that recognizes the interplay of individual, social, and environmental factors in the production of disability. To uncover these relationships, measure disability-based discrimination, and produce evidence to inform new policy and practice that advance the human rights of persons with disabilities have since become critical research aims (Astorga Gatjens, 2012). This chapter engages with these goals by proposing a participatory indicators-based framework to monitor States’ compliance with the CRPD and evaluate changes in the enjoyment of human rights by citizens with disabilities across time. Indicators are methodological tools of an empirical basis, which provide information about aspects of social reality or the changes that are taking place in it. In the human rights field, they have been defined as “a piece of information used in measuring the extent to which a legal right is being fulfilled or enjoyed in a given situation” (Green, 2001, p. 1065). They are a crucial tool for policy design and help to communicate information. In this sense, indicators are “essential in making the rights of marginalised population groups, including disabled people, more visible and governable” (Priestley & Grammenos, 2021, p. 213). Both quantitative (numerical or statistics-based) and qualitative indicators are necessary to reveal how human rights are being upheld (Green, 2001). Indeed, to achieve an in-depth understanding of the problems at stake, their meaning and magnitude requires not just rigorous methodologies and data collection tools but, above all, robust, valid, and sensitive indicators that are grounded in the everyday experiences of persons with disabilities (Office of the High Commissioner for Human Rights (OHCHR), 2009). Yet, such indicators have been slow to emerge. In the increasingly populated field of human rights, disability rights have been, until recently, a relatively neglected area of work (Hynes et al., 2010). The newly developed Sustainable Development Goals and Convention on the Rights of Persons with Disabilities (‘SDG-CRPD’) Resource Package (OHCHR, 2020) represents a groundbreaking effort to address this need. The Resource Package includes a set of indicators to guide a comprehensive assessment of the rights of persons with disabilities in development initiatives. The indicators cover all articles of the CRPD and are a very useful tool for tracking progress in the realization of disability rights and for identifying gaps in implementation. Following the OHCHR methodology (OHCHR, 2012), the framework encompasses structural, process, and outcome indicators. As such, it provides for evaluations 67

68  Research handbook on disability policy that go beyond the identification of States’ commitments to the human rights in the CRPD to also encompass States’ efforts to transform those commitments into desired results (notably through the policies and measures they adopt), as well as the outcomes of such efforts, translated into disaggregated statistics of access and enjoyment of rights. Another recent wide-ranging initiative to develop disability rights indicators is presented in the Disability Data Report 2021 (Mitra & Yap, 2021). The report uses a variety of datasets to conduct a systematic analysis of the disability questions in national censuses and household surveys, from 2009 to 2018, in 180 countries from all regions of the world. It then assesses 30 quantitative indicators, disaggregated across disability status, for 41 countries. Since this list of quantitative indicators was developed considering the provisions of the CRPD and the SDGs that they could inform, they provide a measure of the rights and human development situation of persons with disabilities in these 41 countries, or the so-called ‘disability gap’. This work adds greatly to the growing literature on disability inequalities and offers valuable tools with which to measure those gaps. The framework presented in this chapter shares many features with the two above-mentioned proposals, but also offers distinctive perspectives on at least two levels: (i) the participatory framework of indicators advanced here is driven by reports gathered from persons with disabilities, so it brings forward their voices and is firmly grounded in their lived experiences of access and/or denial of human rights; and (ii) the framework encompasses both quantitative and qualitative indicators. Our framework was developed in the context of Disability Rights Promotion International (DRPI), a project dedicated to establishing a participatory holistic global monitoring system for disability rights. Between 2001 and 2015, the DRPI team developed, pilot-tested (Pinto, 2011), and applied a set of instruments to monitor the implementation of the CRPD around the world. The DRPI approach is holistic in the sense that it involves the collection and assessment of life experiences of people with disabilities, in addition to law and policy analyses, and analyses of media representations of disability. With over 40 projects conducted all over the world, the DRPI approach has been supporting disability rights advocacy efforts while promoting the active participation of disabled people in the production and analysis of evidence about the status of their rights. In what follows we introduce the framework of indicators generated through this participatory methodology. First, however, we provide a more detailed note on the DRPI methodology, which informed and inspired this work, and discuss conceptual approaches and criteria for the development of human rights indicators.

MONITORING DISABILITY RIGHTS: THE DRPI APPROACH The methodology supporting the development of the disability rights indicators presented here is an international collaborative initiative which has been operating since 2001 to establish a monitoring system to address disability discrimination globally. Bringing together disabled persons and their organizations, scholars, and human rights activists, DRPI has developed an innovative methodology that places people with disabilities at the center of holistic disability rights monitoring approaches. Traditionally, human rights assessments rely on the work of international organizations, foreign ministries, and American or European research programs – not on local or national actors (Naval et al., 2008). The DRPI method, instead,

Developing a participatory indicators-based framework for monitoring disability rights  69 works to strengthen leadership among disabled people and their organizations in monitoring disability rights. As such, it adopts a bottom-up approach that ensures their active involvement in evidence-based assessments of human rights. Considering the multidimensionality and complexity of human rights, the DRPI approach entails three levels: individual, involving the collection and analysis of personal accounts of rights denial or realization; systemic, which encompasses a thorough review of disability-related law, policy, and programs; and societal, which comprises the analysis of media representations of disability, as proxies for social attitudes and beliefs about disability. For each of these levels, specific tools have been developed and are being used by people with disabilities and their allies worldwide to collect and analyze the data, notably: ● An interview guide to conduct semi-structured interviews with disabled people and gather their daily life experiences as well as a coding scheme to analyze and categorize the data collected. ● A law and policy template to guide the collection and analysis of law and policy. ● A coding scheme to assess, interpret, and categorize disability-related media stories. From 2013 to 2014, a DRPI monitoring project was undertaken in Portugal and data was collected across these three areas. The project gathered 60 in-depth interviews with people with disabilities aged 12 years and older, living in different regions of the country. To ensure diversity and balance, the sample was controlled for sex, age group, and type of impairment. In addition, the research involved an extensive examination of the legal and policy framework in place to address disability issues, and a compilation and analysis of disability-related news, published between 2009 and 2013 in the three print news media with the largest audience in the country. The semi-structured in-depth interviews were conducted by disabled people themselves after attending a week-long training to learn about the DRPI methodology and tools, and to practice interview skills. Each interview started with two broad questions: “What has brought you more satisfaction in life over the last five years? And what have been the major obstacles or barriers that you faced?” Typically, respondents listed two or three situations that interviewers then probed to explore their human rights implications. This free format enabled interviewees to identify the more relevant issues to them in terms of human rights experiences. Individual stories were then analyzed and grouped into one of eight life domains: access to justice; education; intimacy and family life; income security and support services; information and communication; social participation; health, habilitation, and rehabilitation; and work and employment. Each report was further categorized according to the assertion or denial of the following five human rights principles: ● Autonomy: making own choices independently. Autonomy or self-determination means that the person is placed at the center of all decisions affecting her life. ● Dignity: asserting the inherent worth of every person, regardless of the complexity of her needs. ● Participation, inclusion, and accessibility: organizing societal systems, both public and private, to enable all people to participate fully and effectively. To achieve full inclusion, an accessible, barrier-free physical and social environment is necessary.

70  Research handbook on disability policy ● Non-discrimination and equality: rights are guaranteed without distinction, exclusion, or restriction based on disability or race, sex, language, religion, political or other opinion, national or social origin, property, birth, age, or any other status. ● Respect for difference: involving acceptance of persons with disabilities as part of human diversity and humanity. The responsibility to change falls not on the individual but on the State and civil society, who must accept diversity and respond to the specific needs of the person with impairments. While legal and policy analyses are a conventional method in human rights monitoring studies, media analyses are less frequent, although they can offer important insights. Research conducted in various countries (e.g. in the USA: Zhang & Haller, 2013; in Canada: Devotta et al., 2013; in Portugal: Neca & Castro, 2012; in Lithuania: Guščinskienė & Žalkauskaitė, 2011; in the UK: Barnes, 1992) has revealed stereotypical portrayals of disabled people in popular culture and has called attention to the negative consequences of their continued use, both for disabled people and for society as a whole. As people with disabilities are often depicted as pitiable, passive, and dependent, incapable of participating in society as other citizens, these pervasive disabling imageries help to explain and justify their systematic exclusion from life in the community. In our research, media analyses provided an understanding of the current societal representations and attitudes towards disability and disabled people in Portugal: while overall, disability remains a relatively neglected topic in the press (less than 1% of all the stories published over the period under review involved disability), persons with disabilities were overwhelmingly portrayed as either victims or heroes, with a rights-based discourse relatively absent from the news framing used by journalists to discuss disability topics (Cunha & Pinto, 2017). This overall context is fundamental to understand the discrimination which disabled people encounter daily in Portuguese society. The triangulation of data from these three areas – individual, systemic, and societal – provided a holistic understanding of the human rights situation of people with disabilities in Portugal and enabled the identification of gaps and relevant issues for the realization of human rights of disabled people in this country (Pinto, 2014). In the analysis of data collected through the interviews, Work and Employment emerged as the domain of life where the greatest incidence of personal reports of discrimination was found. This knowledge was used as the basis to start developing the indicators framework advanced in this paper, which also focuses on this specific domain. Several drafts of the framework were then prepared by the research team and discussed and refined in a series of workshops involving national stakeholders, including representatives of disabled people’s organizations, statisticians, researchers, and policy makers. This participatory methodology provided yet another opportunity to ensure true ownership of the process and its outcomes, while enabling the construction of indicators that are both reliable and contextually relevant. Before describing this process in greater detail, let us now briefly discuss conceptual approaches to developing rights indicators.

CONCEPTUAL APPROACHES TO RIGHTS MEASUREMENT As Welling (2008) has pointed out, before deciding how to measure, it is important to define the underlying conceptual perspective about what to measure. A conceptual framework pro-

Developing a participatory indicators-based framework for monitoring disability rights  71 vides the structure to identify and prioritize the information for the development of adequate indicators (Welling, 2008). Several conceptual approaches are available for developing indicators. Green (2001), for instance, argues that human rights indicators can be conceptualized according to: ● The degree of fulfillment of obligations, that is, an assessment of the measures taken by the government to put in place a particular treaty; and ● The state of realization, that is, an assessment of how rights have been put into practice. This latter perspective tends to evaluate the supports provided, the public bodies and mechanisms available to submit complaints (Würth & Seidensticker, 2005), as well as the quality of the process, including how rights to non-discrimination, accountability, and participation are being granted (Green, 2001; Würth & Seidensticker, 2005). According to this view, human rights indicators ought to be developed by considering State obligations in relation to a particular Convention and in relation to the processes involved in implementing those rights, which requires collecting information about possible rights violations as experienced by rights holders on the ground. Landman (2004), in turn, identifies three distinct approaches. He maintains that human rights can be measured in principle, in policy, and in practice. Measuring rights in principle involves describing the formally declared commitments of the State, as these are laid out in national legislation and policy. This is important as enshrining rights in legal documents is a necessary step to protect and ensure them on the ground. However, it is rarely sufficient. Treaties’ supervisory committees usually consider reporting on the formal (or de jure) situation not enough and require more detailed information to portray the human rights situation of any given country (Alston, 1997). Assessing rights in policy provides an indirect measure of human rights. It involves looking at the institutional mechanisms that incorporate and shape commitments and obligations into public interventions led by the States to implement rights on the ground. Rights as policies include the set of human rights principles that inform their implementation, and the principles related to the application of public policies and interventions – their progressive and adequate implementation, as well as the principles of transparency and accountability. This is particularly important for disabled people. In fact, in the disability context, the availability of goods and services per se is not sufficient to guarantee the fulfillment of a right; equally important is the safeguarding principle of non-discrimination to guarantee the enjoyment of such goods and services (Malhotra & Fasel, 2005) and promote adequate responses to individual needs. In addition to these, the United Nations Committee on Economic, Social and Cultural Rights (UNCESCR, 1999) has identified four principles that should apply to public interventions related to the rights of people with disabilities. They are: ● Availability, as a guarantee of the sufficient quantity and context-appropriate means provided to ensure rights. ● Accessibility, as a guarantee of access to everyone, in terms of non-discrimination, physical accessibility, financial accessibility, and accessible communication and information. ● Acceptability, as a required quality based on the principle of human dignity. ● Adaptability, as the flexibility and ability that are needed to respond to individual needs within the diversity of social and cultural contexts.

72  Research handbook on disability policy Finally, the third approach – rights in practice – examines how formal rights commitments are enjoyed and exercised on the ground. According to Landman (2004), all three approaches are necessary but studies that combine and triangulate a variety of monitoring measures, although holding great promise for a better understanding of human rights protections and progress, are still relatively rare. The United Nations Office of the High Commissioner for Human Rights (OHCHR, 2012) adopts a similar perspective, emphasizing that approaches to measuring rights should be able to assess States’ commitments, States’ efforts, and the actual results of such efforts in promoting human rights. Hence, the framework advanced three categories of indicators: ● Structural indicators, reflecting “the ratification and adoption of human rights instruments and the creation of basic institutional mechanisms deemed necessary for the promotion and protection of human rights” (OHCHR, 2012, p. 34). ● Process indicators, measuring “‘duty’ bearers ongoing efforts to transform human rights commitments into the desired results” (OHCHR, 2012, p. 36). ● Outcome indicators, capturing “individual and collective attainments that reflect the state of enjoyment of human rights in a given context” (OHCHR, 2012, pp. 37–38). The configuration of structural–process–outcome indicators enables the measurement of the commitment of the duty-bearer to the relevant human right standard, the actual efforts undertaken to make that commitment a reality, and the results of those efforts over time, thus providing a thorough assessment of the steps taken by State parties in meeting their human rights obligations. This categorization offers the further advantage of rendering less opaque the notion of human rights, taking them beyond the strict sphere of legal discourses. Ultimately, this approach facilitates the mainstreaming of human rights in policy development and implementation (OHCHR, 2008). For all these reasons, we also considered this tripartite conceptualization when developing our framework.

CRITERIA FOR DEFINING INDICATORS AND TYPES OF INDICATORS Whether structural, process, or outcome, indicators are “windows opening to a larger reality” that “appear to be measuring more than what they say they measure” (Andersen & Sano, 2006, p. 12). For example, human rights indicators such as educational attainment of students with disabilities, percentage of fully accessible public buses, or violation of the prohibition of discrimination against people with disabilities in the workplace provide important information about the level of realization of the right to education, the right to mobility, and the right to work of disabled people, respectively. However, they also provide insight into a matter of larger significance, which is the degree of inclusion of people with disabilities in that same society. Defining a system of indicators is, thus, a complex task that poses multiple challenges. To obviate some of these difficulties, a useful criterion for developing human rights indicators is encapsulated in the acronym SMART (Andersen & Sano, 2006; Schultz, 2009). In other words, general requirements for developing indicators suggest that these must be specific, that is, precise and accurate, measurable, in the sense that it must be possible to measure an

Developing a participatory indicators-based framework for monitoring disability rights  73 indicator at a reasonable cost and effort, attainable, that is, realistic to achieve, relevant to the objective or output whose fulfillment they seek to measure, and time framed. The application of these criteria may not, however, preclude some degree of subjectivity in the selection of indicators. Indeed, as Cobb and Rixford (1998, p. 17) reminded us in their summary of earlier work on the development of indicators, “there’s no such thing as a value-free indicator” since the very act of deciding what and how to count already involves making value judgments. Therefore, what is important is to open values, methods, and measures up for public scrutiny, so that others can assess their validity. Another important distinction is often drawn between context-specific and universal indicators. Many scholars and human rights advocates (e.g. Ignatieff & Desormeau, 2005; Kalantry et al., 2009; OHCHR, 2008; Xu, 2017) agree that both are useful and necessary. Universal indicators provide the basis for international comparisons, which makes it possible to highlight disparities around the globe in the fulfillment of specific rights. However, indicators need not be universal if the aim is to measure compliance and determine whether a State is fulfilling or not its obligations, rather than whether it is complying with a treaty to a greater or lesser extent than other States Parties. Therefore, using context-specific indictors leads to a selection of indicators that is likely to be more culturally sensitive, and more appropriate and relevant for the situation of each State and the treaty provisions in question. A further classification distinguishes between indicators that are of a quantitative and qualitative nature. Quantitative indicators measure change through numerical or statistical facts (i.e. number of accessible buses, percentage of people with disabilities participating in community meetings, etc.). They rely on data usually easy to collect and calculate, which can be seen as an advantage, but they also present some disadvantages – the largest one being their tendency to “‘fix’ their objects in time and space and therefore miss, if not dehumanize, the transformative and qualitative nature of such elements as … culture and values, participation or social creativity” (Kapoor, 1996, p. 9). As it has been noted by Naval et al. (2008), there are many dimensions of human rights that remain unquantifiable, and therefore quantitative indicators cannot provide the full picture – more sophisticated frameworks are needed to tackle the complexity of human rights assessment. Along similar lines, the OHCHR Resource Package (2020) calls attention to the importance of gathering qualitative data, namely through focus groups, interviews, and case studies, to complement statistical and numerical indicators. Some of the problems found with quantitative indicators are better addressed by qualitative indicators whose aim is to capture people’s beliefs, opinions, perceptions, and narratives. Kapoor (1996, p. 9) discusses two types of qualitative indicators: quantifiable ones and participatory ones. Qualitative-quantifiable indicators are those that can be quantified through such instruments as public opinion polls, attitude surveys, and participant observation. Provided that the number of observations is large enough, qualitative-quantifiable indicators allow for greater levels of disaggregation (by sex, age, disability type, and so on) than quantitative indicators do. For instance, rather than only counting the percentage of workers with disabilities to measure the participation of people with disabilities in the labor market, a survey of employers (e.g. asking their opinion about disabled workers) may reveal important information about the dynamics of labor inclusion of this group of the population. Still, Kapoor recognizes, this ‘top-down’ approach may be limiting, as it imposes “artificial and rigid categories on what are fluid human rights … processes” (1996, p. 9). Qualitative-participatory indicators deal more appropriately with such weakness “by including the perspectives of all stakeholders, especially the program beneficiaries” (p. 10). Thus, the main strengths of participatory indi-

74  Research handbook on disability policy Table 6.1

Overarching framework to measure disability rights

Structural Indicators ●Identification of gaps between international treaties on the human rights of persons with disabilities and national laws ●Identification of gaps and inconsistencies in the national legislation ●Identification of regulation to support implementation Process Indicators ●Identification of the actors/organizations responsible for implementation ●Indicators based on budget allocation ●Coverage of targeted population groups under public programs ●Human rights complaints received and the proportion redressed ●Incentive and awareness measures extended by the duty-bearer to address specific human rights issues ●Indicators reflecting functioning of specific institutions (e.g. legal system) Outcome Indicators ●Identification of the degree of completion of public interventions on the human rights of persons with disabilities (ratio objectives/outcomes) ●Type and number of problems solved or intervened upon ●Realization/denial of human rights, as experienced by persons with disabilities Source: Adapted from OHCHR (2012).

cators are their ability to “capture how (i.e. descriptively, not quantitatively) people feel about their rights, freedoms, (dis)empowerment or responsibilities” (Kapoor, 1996, p. 10), their capacity to reflect local understandings and meanings of human rights, and their increased appropriateness, usefulness, and relevance at national or local level (OHCHR, 2008; Xu, 2017). Nevertheless, participatory indicators are often criticized for being based on “subjective” rather than objective assessments, although they are no more prejudicial than quantitative ones, which also categorize data according to preconceived categories and values predefined by researchers, international human rights agencies, or governments. Despite the advantages that they present, the use of participatory indicators also raises some difficulties mostly related to the time and cost involved in consulting a large and diverse constituency, particularly to ensure that the voice of hard-to-reach groups is included; finally, they create limitations for developing international comparisons (Kapoor, 1996). Thus, in designing a set of human rights indicators it is important to strike a balance, not just between qualitative and quantitative indicators, but also between universally relevant and contextually specific indicators, as both kinds are needed (Ignatieff & Desormeau, 2005; OHCHR, 2008, 2020; Xu, 2017). To provide a comprehensive assessment, the framework that we developed is based on participatory qualitative indicators, but also encompasses more traditional, universal, quantitative, and qualitative-quantifiable indicators.

THE OVERARCHING FRAMEWORK In this section, we outline the overarching theoretical framework that underlies the list of participatory indicators we devised. We adopted the three-level framework proposed by the Office of the High Commissioner for Human Rights on its work on the development of indicators at the international level (OHCHR, 2012, 2020). This approach offers a coherent and

Developing a participatory indicators-based framework for monitoring disability rights  75 clear structure while facilitating international comparisons and the subsequent development and adaptations of the framework, whether internationally or at the national level. Table 6.1 summarizes the overarching framework adopted. As it illustrates: ● Structural indicators provide an assessment of the international human rights commitments of the State and of general legislation and regulations that enshrine the rights of citizens with disabilities. ● Process indicators provide an assessment of the way legislation is implemented and the means and resources associated with this process including the degree of participation of a variety of actors (particularly persons with disabilities), the instruments related to the implementation of norms, and their enforcement mechanisms. These indicators may take the form of descriptive qualifiers, statistics, and societal representations (notably those collected through the media). ● Outcome indicators assess the outcomes of public interventions and the impact of these interventions on the exercise of human rights of persons with disabilities in particular contexts. They involve statistics, categorized life experiences reflecting the degree of fulfillment of the human rights of persons with disabilities as experienced in their daily life, and societal representations, translated by the way in which issues of disability and human rights are talked about by the media.

DEVELOPING THE FRAMEWORK: IDENTIFYING ATTRIBUTES AND SELECTING INDICATORS Once we had established the overarching framework, we proceeded to its operationalization through the selection of indicators. The guidelines provided by the OHCHR (2012) recommend the identification of rights’ attributes as a necessary step to develop indicators. This process requires a thorough examination of the content or substance of the human right we want to measure. Each human right involves a set of attributes, which seek to translate the essence of the standard to which they refer. Thus, the identification of attributes needs to be based on a comprehensive review of the principles and laws from which the standard stems. It is through these attributes that a link or relationship is established between the legal pattern and the indicators. The selected indicators must be mutually exclusive and restricted to a limited number. Well-articulated attributes promote the identification of more relevant indicators (OHCHR, 2012, p. 75). However, the traditional approach to the identification of attributes becomes insufficient in the disability context. Indeed, as many have noted (e.g. Astorga Gatjens, 2012; Mégret, 2008; OHCHR, 2009; Stein & Lord, 2010), the CRPD stands out among international human rights conventions for its articulation of monitoring obligations. Paragraph 3 of Article 33 specifically requires that “civil society, and in particular persons with disabilities and their organizations, shall be involved and participate fully in the monitoring process” (United Nations, 2006; our emphasis). This represents an innovative feature of the CRPD and reflects the cross-cutting principle of the Convention that disabled people must participate in all decisions impacting them (Stein & Lord, 2010). In this sense, the participation of people with disabilities in processes leading to the conceptualization of disability rights indicators must be ensured too.

76  Research handbook on disability policy Therefore, further to the identification of attributes based on analyses of the core content of a particular human right, we gathered the insights of disabled people about the realization of their rights, through the collection and analysis of personal stories. The triangulation of top-down and bottom-up approaches (Kapoor, 1996) grants a more contextualized identification of relevant attributes, one that considers the actual meaning of disability rights in the daily life of those most affected. As stated above in this chapter, we drew from data gathered through the DRPI monitoring project undertaken in Portugal in 2013–2014. This study provided an identification of the major gaps and most relevant human rights issues for disabled people in Portuguese society, through the personal accounts of those who experience disability. In this way, the voice of people with disabilities was visibly included in the design of the indicator-based framework itself (see Figure 6.1).

Figure 6.1

Methodology for developing a participatory indicator-based framework for monitoring disability rights

Keeping with the DRPI participatory approach, the decision to focus on the right to work was also directly related to the findings of the Portuguese monitoring study. In fact, through the analyses conducted on the personal stories gathered, Work and Employment emerged as the domain of life where we found the greatest incidence of reports of discrimination or, in other words, the domain in which rights-as-practices indicated one of the highest levels of non-compliance with rights-as-standards. The research further identified the human rights principles which were more often infringed within this specific domain, and the corresponding

Developing a participatory indicators-based framework for monitoring disability rights  77 situations that were considered more grievous. These included reports of violations of the following principles: (a)

Dignity, particularly in terms of: (i) Feelings of depreciation/humiliation (due to the lack of skills’ recognition in access to employment and career development). (b) Inclusion and Accessibility, particularly in terms of: (i) Exclusion from the labor market on the basis of disability; (ii) Lack of accessibility in the workplace. (c) Respect for Difference, particularly in terms of: (i) Disrespectful and abusive behaviors in the workplace (by colleagues and management); (ii) Persistence of prejudice and negative stereotyping of disabled people in the workplace. (d) Discrimination and Inequality, particularly in terms of: (i) Unequal treatment regarding employment. These research outcomes guided the process of selection of attributes and indicators, which was also grounded in a review of the core content of the right to work, as outlined in the CRPD and discussed in the General Comment No. 23 of the United Nations Committee on Economic, Social and Cultural Rights (2016) on the right to just and favorable conditions of work. Through an interactive process involving disabled people and other relevant stakeholders (as depicted in Table 6.2), five attributes were identified to assess the content of the right to work for people with disabilities. They are: ● ● ● ● ●

Access to adequate employment; Adequate and fair work conditions; Accessibility to the workplace; Initial and continuous vocational training; and Protection from unemployment/undignified work.

Some of the attributes identified in this project resonate with previous work on the development of indicators for the human right to work (see for example OHCHR, 2012, 2020); additionally, a new one was created to specifically address disability in this context – the attribute accessibility to the workplace. This attribute was deemed a core element of the right to work, as spelled out in article 27 (i) of the CRPD which specifically requires that “reasonable accommodation is provided to persons with disabilities in the workplace”. As Table 6.2 shows, 33 indicators were then selected to assess the right to work for disabled people in terms of the tripartite approach of rights-as-commitments (structural indicators), rights-as-efforts (process indicators), and rights-as-outcomes (outcome indicators). The framework is a combination of universal indicators (e.g. indicator 1, 11, 12, or 30) and contextually specific indicators (e.g. indicator 10, 13, or 15), and involves both quantitative (e.g. indicator 16, 18, or 27) as well as qualitative data, collected through the narratives of people with disabilities reporting their experiences of rights realization/denial (indicator 9, 20, 22, 23, 26, 29, 32, and 33), thus strengthening the level of participation in the approach developed. The framework was pilot-tested in Portugal. In undertaking that exercise, we found increasing difficulties in populating the indicators as we moved from structural to process and then

Structure Indicators

Initial and continuous vocational training

Protection from unemployment/ undignified work

Indicator 1 – International conventions ratified by the Portuguese State (date of ratification) Indicator 2 – Constitution of the Portuguese Republic and general legislation about the right to non-discrimination (date of entry into force and coverage) Indicator 3 – Right to non-discrimination laid down in the labor code (date) Indicator 4 – Accessibility norms about the built environment, public spaces and public transportation enshrined in the legislation Indicator 5 – Specific regulations on the right to work, work conditions and the adequacy of workplaces and working time for persons with disabilities (date of entry into force and coverage) Indicator 6 – Number of organizations representing disabled people involved in the promotion and protection of the right to work       Indicator 7 – Collective employment agreements addressing work conditions for disabled people

Accessibility to the workplace

Access to adequate work

 

Adequate and fair work conditions

A participatory indicators-based framework to measure the right to work for people with disabilities

Table 6.2

78  Research handbook on disability policy

Process Indicators

 

Adequate and fair work conditions

Accessibility to the workplace

Initial and continuous vocational training

Protection from unemployment/ undignified work Indicator 8 – Number and percentage of complaints about discrimination in the workplace involving disabled people and their respective rate of response Indicator 9 – Media representations about work and employment and people with disabilities   Indicator 15 – Total and Indicator 13 – Total Indicator 10 –Total and   percentage of the annual and percentage of the percentage of the annual public budget allocated to annual public budget public budget allocated to allocated to improving vocational training of people support employment of with disabilities accessibility in the people with disabilities Indicator 16 – Total and workplace Indicator 11 – Total and percentage of employed Indicator 14 – Total percentage of people people with disabilities who and percentage of with disabilities receiving attended trainings (year) workplaces audited effective support for their Indicator 17 – Total and that complied with (re-)entry into the labor percentage of unemployed accessibility norms market (year) people with disabilities who and percentage of Indicator 12 –Total and attended trainings (year) audits resulting in percentage of people with administrative action or disabilities who moved prosecution from precarious to stable contracts (year)

Access to adequate work

Developing a participatory indicators-based framework for monitoring disability rights  79

Initial and continuous vocational training Indicator 27 – Number and percentage of disabled people employed after attending training Indicator 28 – Number and percentage of disabled people who improved their level of qualification after completing training Indicator 29 –Categorized personal accounts about completion of vocational training programs and their impact on workers’ employability and career

Accessibility to the workplace Indicator 24 – Number and type of completed interventions to improve accessibility in the workplace Indicator 25 – Total and percentage of the government budget spent on the acquisition of technical devices for employment and vocational training Indicator 26 – Categorized personal accounts about situations of lack of accessibility in the workplace and their resolution

Adequate and fair work conditions Indicator 21 – Number of resolved discrimination claims related to the workplace, by type of resolution Indicator 22 – Categorized personal accounts of discrimination and inequality in work conditions and their resolution Indicator 23 – Categorized personal accounts of discrimination and inequality in employment relations

Access to adequate work

Indicator 18 – Percentage of employed disabled people, by type of impairment, gender, age, qualifications, place of residence, type of contract Indicator 19 – Percentage of unemployed disabled people Indicator 20 – Categorized personal accounts about experiences related to access to employment

Source: Adapted from OHCHR (2012).

Outcome Indictors

 

Protection from unemployment/ undignified work Indicator 30 – Number and percentage of disabled people receiving unemployment benefits Indicator 31 – Number and percentage of disabled people currently attending training activities after losing employment Indicator 32 – Categorized personal accounts of dismissal from disabled people Indicator 33 – Categorized personal accounts of exploitation, harassment, and violation of physical and moral integrity in the workplace from disabled people

80  Research handbook on disability policy

Developing a participatory indicators-based framework for monitoring disability rights  81 outcome indicators – disaggregated data on disability in Portugal (as in many other countries) is lacking. Nevertheless, the integration of the three types of indicators (structure, process, and outcome) and the integration of quantitative and qualitative data provided a clearer picture of the status of the human right to work of people with disabilities than would have been possible if only structural indicators and quantitative data were used. The qualitative reports added depth to the monitoring process, illuminating the social relations and processes that underlie the realization of this right for disabled people in their daily life. The picture that emerged indicated that a wide gap can be found between what the Portuguese State committed to by signing and ratifying the CRPD, and the actual enjoyment of the right to work by people with disabilities in Portugal. This is plainly illustrated by examining just a few indicators. For instance, while prohibition of discrimination is enshrined in the Portuguese labor code (as per indicators 2 and 3) and accessibility norms are in place (indicator 4), reports of disabled people about their working conditions reveal the persistence of unequal and discriminatory treatment in the workplace, ranging from attitudes of prejudice, devaluation, and the non-recognition of working skills, to harassment and exploitation as well as exclusion due to lack of accessibility and denial of reasonable accommodation (indicators 22, 23, 26, and 33). Looking at selected process indicators, in turn, revealed some of the factors that lie behind these gaps – the lack of mechanisms to enforce accessibility legislation (indicator 14) and the reduced budget allocated to support vocational training, employment, and accessibility in the workplace for people with disabilities (indicators 10, 13, 14, and 15). In short, the framework enabled a comprehensive perspective, not just of the nature and scope of the problems at stake preventing the enjoyment of the right to work for disabled people in Portugal, but also of their underlying causes and processes. This information is very relevant to establish who is accountable for current abuses, and to act to prevent violations of these rights in the future.

CONCLUDING REMARKS: THE POTENTIAL OF THE PARTICIPATORY INDICATORS-BASED FRAMEWORK Monitoring the rights of disabled people became an obligation for the increasingly large number of countries signatory to the Convention on the Rights of Persons with Disabilities. To measure the progress achieved in the implementation of rights for this marginalized group, relevant and robust indicators are needed. The participatory indicators-based framework proposed in this chapter addresses this challenge with innovation, by bringing forward the voice of disabled people in the process of selection and development of indicators. While the set of indicators advanced in this chapter is particularly relevant to the Portuguese context and may require some adjustment when applied to different countries, we believe that the methodology proposed is advantageous for all those who are undertaking a similar task in other countries or parts of the world. In fact, the involvement of disabled people in all steps of the monitoring process, as well as the mix of quantitative and qualitative, universal, and contextual indicators proved to be not just possible, but indeed necessary to provide a full picture of the status of implementation of the human right under analysis. The information provided by this participatory indicators-based framework can be useful at various levels: it helps with establishing the accountability of duty-bearers for their duties to protect, promote, and fulfill human rights; it can inform strategies to implement rights and set

82  Research handbook on disability policy priorities of action in the face of scarce resources; and it enables the measurement of progress or decline in the realization of the right to work for people with disabilities (Hines, 2005). Importantly too, as the framework is driven by the aggregated outcomes of reports gathered from disabled people’s accounts about their own human rights experiences, it brings forward their voices to the center of monitoring processes, giving expression to the CRPD obligation of involving people with disabilities in all decision-making processes that concern them. It is important to understand, however, that we do not regard this framework as a ‘fixed’ or ‘final’ list, not even for Portugal, but as one that will continue to be periodically reviewed and updated. The selected indicators aim to put the spotlight on key human rights issues and concerns for disabled people, and as such they need to be updated at regular intervals to maintain their relevance. Moreover, similar frameworks for other relevant areas of disability rights still need to be developed, which opens new avenues for future research. It is our hope that this work provides a useful template and encourages others to pursue this goal.

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7. Disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand: maximising the potential of civil society in the implementation of Article 33.3 Robbie Francis Watene, Brigit Mirfin-Veitch and Umi Asaka

INTRODUCTION In 2008, Aotearoa New Zealand became one of the first countries in the world to sign and ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (Bell, McGregor & Wilson, 2015). In doing so it signalled a commitment to Article 33 – an innovative article within the UNCRPD that articulates how State Parties should promote, protect and monitor the progressive realisation of the Convention (United Nations, 2006). Having played an important role in the development of the Convention, Disabled People’s Organisations (DPOs) were quick to submit a report to the New Zealand Government outlining ways in which civil society could effectively fulfil its monitoring duties, as mandated under Article 33.3 of the UNCRPD (McGregor, 2016). With agreement from the New Zealand Government and funds to match, a group of DPOs set about developing a system for monitoring the progressive realisation of the Convention in Aotearoa New Zealand; an evidence-based research project led by disabled people, for disabled people. However, though the original intent of disabled person-led monitoring in Aotearoa New Zealand was to contribute evidence of rights violations to international reporting cycles via the International Monitoring Mechanism (IMM), opportunities to influence policy at a domestic level have also arisen – raising important questions about the role of monitoring, methods of monitoring, and also the intended audience of monitoring findings. This chapter explores these questions by first drawing on recent commentaries around the UNCRPD and human rights model of disability. It then investigates Aotearoa New Zealand’s role in implementing the UNCRPD, including its most recent cycle of disabled person-led monitoring on disabled people’s right to the highest attainable standard of health (Article 25). The disabled person-led monitoring is then considered alongside the Government’s concurrent work to review and reform the national health and disability system. By analysing these initiatives through a disability rights lens, the unlimited potential of disabled person-led monitoring begins to emerge – both at an international level and within domestic policy.

BACKGROUND – UNDERSTANDING DISABILITY AS A HUMAN RIGHTS ISSUE The way in which disability and impairment is understood and responded to by society has a significant impact on the way disabled people navigate and experience our lives and the 85

86  Research handbook on disability policy communities we live in. Within disability studies, ‘heuristic devices’ are used to help decipher these understandings (Barnes, 2008, p. 4). Commonly referred to as ‘models of disability’, heuristic devices represent particular ways of thinking about impairment and disability (Llewellyn & Hogan, 2000). Although they are not theory or explanations in themselves, they are, however, important. Heuristic devices – such as models of disability – can be indicative of underlying structures for large and complex diagnostic and defining systems with significant political, social and financial consequences. They also determine causal and responsibility attributions, guide legislation and policy, develop research agendas, inform welfare systems, provide frameworks for professional and clinical practice, and contribute to administrative and social planning (Smart, 2009). Some of the more commonly referenced models include the moral model of disability, which considers disability through a theological lens (Retief & Letšosa, 2018); the charity model of disability where impairment is perceived as a tragedy that must be alleviated by charity as the name suggests (Clare, 2001); and the medical model of disability which understands impairment as an individual pathological problem that can be managed or fixed through medical intervention (Goodley, 2017). More recently, the disability rights movement ushered in a new way of thinking about disability, known as the social model. Originating in the UPIAS/DIA movements, the social model presents disability as a form of socially created oppression (Lawson & Beckett, 2021). Importantly, it differentiates between impairment and the disabling barriers that exist in society (Oliver, 2013), and challenges culturally and structurally violent notions of disability (Francis, 2019) by embracing the idea that impairment is a natural variation of human life. As a result, addressing and responding to the inequity and inequality experienced by people with impairments is the responsibility of society, and not that of the individual. While it is not without its critiques, the social model of disability is a heuristic device that has undoubtedly helped to form the foundation from which the human rights model of disability has emerged. However, the human rights model is considered to be more comprehensive than the social model, in that it encompasses both sets of human rights, civil and political as well as economic, social and cultural rights (Degener, 2016). It sees equity and rights as inclusive of all people, and that human rights are universal, inherent and inalienable (Al Ju’beh, 2017). Grounded in equal opportunity theory, the human rights model examines the right to self-determination and society’s collective responsibility for ensuring fair prospects of self-determination for all people. It recognises that some individuals and groups of people experience unfair advantages in life for reasons beyond their control. Consequently, society has a collective obligation to improve the prospects of self-determination for individuals and groups who do not have said advantages (Mithaug, 1996). In the context of disability, disabled people are considered central decision makers, citizens and as rights holders, while seeking to transform unjust systems and practices (Al Ju’beh, 2017). This includes: ● ● ● ●

Recognising the existence of structural discrimination against disabled people in society; Acknowledging the collective strength of disabled people and people in general; Supporting disabled people to determine our own agenda; Recognising legislation as a basis for establishing the visibility of the democratically enforceable rights of disabled people; ● Bringing legal sanction against disability discrimination (Johnstone, 2001).

Disabled person-led monitoring of the UNCRPD  87 Importantly, the human rights model holds that equal opportunity is not a question of charity to be bestowed on marginalised populations, but a human right. The model is based on empowerment (referring to the participation of disabled people as active stakeholders) and accountability (the duty of society to implement rights and to justify the quality and quantity of their implementation) (Miller & Ziegler, 2006). While some theorists have framed the human rights model as an extension of the social model (for example, see Degener, 2016), more recent commentaries have reflected on the rights approach as its own distinct model. As discussed by Lawson and Beckett (2021) the social model is a descriptive and heuristic device that operates to identify where policy reform is needed. The human rights model, on the other hand, is a prescriptive model of disability policy: ‘Accordingly, the focus of the human rights model is not the concept of disability. Rather it provides guidance (and requirements) on policy responses to disability. Consequently, it can be viewed not as a model of disability but as a model of disability policy’ (p. 364). This shift in thinking is important, as it has served to strengthen the framework from which the disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand has been able to progress in the way that it has. However, before reflecting on Aotearoa’s approach to Article 33, let us first take a moment to briefly explore its relationship with the UNCRPD itself, and the impact this has had on bringing life to Article 33 of the Convention.

THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES Between 2001 and 2006, both the New Zealand Government and New Zealand’s civil society played an important role in the development of the UNCRPD. As one of a few countries with a national disability strategy grounded in the social model of disability that predated the Convention, we were well placed to inform the discussions on a new disability Convention and the drafting of its content. This included leadership by Ambassador Don MacKay who chaired the Ad Hoc Committee considering the new disability convention and the working group that drafted the Convention’s text (Kayess & French, 2008; MacKay, 2006; McGregor, 2016), as well as a strong contingent of civil society and civil servants in the Convention’s Ad Hoc Committee and Working Group. Following its launch in 2006, the Government of New Zealand then became one of the first to ratify the UNCRPD in 2008, before further indicating its commitment by ratifying the Convention’s Optional Protocol in 2016. When considering the UNCRPD from a human rights perspective, it is interesting to note the different roles that the social and human rights models played in its formation. As observed by Lawson and Beckett (2021), the operation of the social model helped to generate the political impetus for a disability-specific convention. The social model was also evident in the drafting of the Convention, particularly during the Ad Hoc Committee debates when ensuring solidarity between different impairment groups and defining disability (for example, in the Preamble). Even so, the social model itself was not necessarily referenced explicitly during Ad Hoc Committee debates, nor within the Convention’s content, or subsequent concluding recommendations provided by the UNCRPD Committee to States Parties in the years that have followed.

88  Research handbook on disability policy On the other hand, Lawson and Beckett (2021) describe the human rights model as an ‘oppositional device operating to challenge technologies of government which marginalise, disadvantage and disempower people’ (p. 369). Drawing on the work of Foucault, they liken the human rights model to a technology (or procedure) of discipline. That is, techniques such as procedural codification, surveillance, examination and mechanisms for reward or punishment, which are used to correct undesirable states and behaviours. For example, under Article 33.3 of the Convention it is civil society’s responsibility to monitor the Convention, while Article 34 articulates the State’s responsibility to report on ‘measures taken to give effect to its obligations under the present Convention’ – both being procedures that might be described as technologies or procedures of discipline. In addition to being entrenched in the content of the UNCRPD itself – particularly the monitoring and reporting processes – the human rights model is also routinely referenced within the UNCRPD Committee’s Concluding Observations. For example, States are often praised for progressively realising their obligations under the UNCRPD, and criticised for regressive developments and inaction (Lawson & Beckett, 2021).

MONITORING DISABILITY RIGHTS AND THE HUMAN RIGHTS MODEL OF DISABILITY In a broad sense, the United Nations defines monitoring as the active collection, verification and immediate use of information to address human rights problems. It can involve gathering information about incidents, observing events such as trials, site visits, dialogue with governments and authorities, and the pursuit of remedies to rights violations and abuses (Office of the High Commissioner for Human Rights, 2001). Despite advancing the ‘foundation of freedom, justice and peace in the world’ (United Nations, 1948), however, UN conventions and treaties have long been criticised for lacking the authority to ensure compliance and effectiveness within the States that ratify them. For many countries, human rights laws often represent little more than a paper victory; a statute that is signed and looks good on paper but fails to be implemented in real life (Perlin, 2012, 2014). One way that this issue has started to be addressed, is through the strengthening of National Human Rights Institutions (NHRIs). In 1991, the United Nations Commission on Human Rights hosted its first International Workshop on National Institutions for the Promotion and Protection of Human Rights. The workshop brought together national and regional institutions involved in the protection and promotion of human rights, to review patterns of cooperation of institutions, such as the United Nations and its agencies, and to explore ways of increasing their effectiveness in monitoring human rights. As a result of these workshops, a list of recommendations was produced, leading to the adoption of the Paris Principles in 1993. The Principles constitute a set of internationally recognised standards to assess the credibility, independence and effectiveness of NHRIs. Importantly, the Principles give NHRIs the power to investigate and make recommendations to States on matters relating to human rights issues while maintaining the power of investigation, independence and adequate resources (Office of the High Commissioner for Human Rights, 1993). In short, NHRIs are established by States for the specific purpose of: advancing and defending human rights at the national level, and are acknowledged to be one of the most important means by which States bridge the implementation gap between their international

Disabled person-led monitoring of the UNCRPD  89 human rights obligations and actual enjoyment of human rights on the ground. (Global Alliance of National Human Rights Institutions, 2017, para. 2)

The relevance of the Paris Principles to the UNCRPD and disability rights monitoring should not be underestimated. During the drafting of the Convention, Ad Hoc Committee members were ‘mindful of the perceived “failures” of the existing system of international monitoring’ (Quinn, 2009, p. 227), with both NHRIs and civil society being challenged to come up with an innovative system for ensuring that the Convention could gain real traction not just internationally, but also domestically (Quinn, 2009). After much deliberation, a ‘double track control’ was introduced to the content of the Convention that allowed for two different, yet complementary, monitoring mechanisms that would operate at international and national levels (Manca, 2017, p. 593). International Monitoring As outlined in Articles 35 and 36 of the Convention, the first monitoring track provides for an international monitoring mechanism. That is, an independent panel of disability experts known as the Committee on the Rights of Persons with Disabilities. Based in Geneva, Switzerland, the role of the Committee is to examine State reports on their efforts to progressively realise the articles contained within the Convention; ask questions of States; provide follow-up recommendations and Concluding Observations; receive communications from individuals or groups (as mandated by the Optional Protocol); initiate inquiries; consult with stakeholders; and adopt statements (General Comments) (Manca, 2017). Since signing and ratifying the UNCRPD and its Optional Protocol in 2008 and 2016 (respectively), the New Zealand Government has completed one reporting cycle (2014) and was expected to engage in a second reporting cycle in 2019. However, due to unavoidable circumstances, the second cycle of monitoring has been postponed. Although this method of international monitoring is not new to the United Nations, when combined with the second track of national monitoring the UNCRPD represents a new and innovative approach to ensuring State compliance of human rights. National Monitoring – Article 33 The second track of monitoring is regulated by Article 33 of the Convention (Manca, 2017): Article 33 – National implementation and monitoring 1. States Parties, in accordance with their system of organisation, shall designate one or more focal points within government for matters relating to the implementation of the present Convention, and shall give due consideration to the establishment or designation of a coordination mechanism within government to facilitate related action in different sectors and at different levels. 2. States Parties shall, in accordance with their legal and administrative systems, maintain, strengthen, designate or establish within the State Party, a framework, including one or more independent mechanisms, as appropriate, to promote, protect and monitor implementation of the present Convention. When designating or establishing such a mechanism, States Parties shall take into account the principles relating to the status and functioning of national institutions for protection and promotion of human rights. 3. Civil society, in particular persons with disabilities and their representative organisations, shall be involved and participate fully in the monitoring process (United Nations, 2006).

90  Research handbook on disability policy In short, ‘Article 33 CRPD provides that States should have national structures for the implementation and monitoring of the Convention. [...] it requires both the creation of focal points in the public administration and that of independent mechanisms outside of it, while guaranteeing the participation of civil society’ (de Beco & Hoefmans, 2013, p. 18). However, the way in which Article 33 is delivered remains flexible, depending on existing state structures and political or organisational contexts. For example, while the Convention is not exactly clear on what a ‘focal point’ is, a subsequent Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities (United Nations Department of Economic and Social Affairs, Office of the High Commissioner for Human Rights & Inter-Parliamentary Union, 2007) suggests that a focal point could be an individual or section within an existing ministry, or an institution solely dedicated to disability issues (Manca, 2017). Similarly, the second part of Article 33 leaves the interpretation of ‘one or more independent mechanisms’ to the discretion of the State. For example, states may choose to extend the mandates of existing human rights mechanisms, or instead assign the task of promotion, protection and monitoring of the Convention to a new mechanism (Manca, 2017; Office of the High Commissioner for Human Rights, 2009). The third part of Article 33 concerns the involvement of civil society in monitoring efforts. Again, the Convention stops short of defining what this constitutes exactly but clarifies that disabled people and their representative organisations ‘shall be involved and participate fully in the monitoring process’. The novelty and scope of Article 33 has been praised by the United Nations, rights advocates and scholars alike (Lorion, 2019), noting that the ‘inclusion of norm detailing national implementation and monitoring structures and their functions at national level is unprecedented in a human rights treaty’ (Office of the High Commissioner for Human Rights, 2009, p. 5). According to Manca (2017) there are many ways in which civil society might contribute to national monitoring. For example, civil society may assist State reporting procedures and the dissemination of findings and Concluding Observations; help to monitor the implementation of decisions made by the UNCRPD Committee in response to individual complaints; formulate proposals for the implementation of the Convention; assist in collecting data; and consult with States on the realisation of Article 33. One of the methods used to monitor disabled people’s human rights is called Disability Rights Promotion International (DRPI). The DRPI model was developed in 2002 as a result of a discussion at a seminar hosted by the United Nations Special Rapporteur on the Rights of Persons with Disabilities, Dr Bengt Lindqvist, prior to the establishment of the UNCRPD (Pinto, 2015). The DRPI aims to: provide a voice to marginalised populations; enhance public awareness by documenting abuses and violations; reinforce a collective identity amongst the disability community; and support efforts to achieve social justice (DRPI, n.d.). The approach utilises both qualitative and quantitative research to achieve these goals. Since the commencement of the UNCRPD, DRPI has been adapted as a methodology to monitor the implementation of the UNCRPD in numerous countries across five different continents (Pinto, 2015). Importantly, the DRPI methodology provides a framework for ensuring that Article 33.3 is carried out by disabled people themselves. In summary, ‘Article 33 CRPD offers those actors concerned with the promotion and protection of disability rights the unique opportunity to urge States to abide by their commitments

Disabled person-led monitoring of the UNCRPD  91 through their participation in various bodies, thereby making the Convention a powerful tool for their action’ (de Beco & Hoefmans, 2013, pp. 19–20).

ARTICLE 33 IN AOTEAROA NEW ZEALAND Soon after the Convention’s launch in 2006, Aotearoa New Zealand’s Disabled People’s Organisations that had actively contributed to the Convention’s drafting came together again under the umbrella of the ‘Convention Coalition’ to discuss what an effective delivery of Article 33 might look like within the context of Aotearoa New Zealand. They then submitted a report to the Office for Disability Issues – the newly appointed focal point within Government (according to Article 33.1) – requesting that the New Zealand Government form an active partnership with the Coalition in order to progressively realise their obligations under the Convention, particularly in relation to national monitoring, to which the Government agreed (McGregor, 2016). Further to this, in 2011 the New Zealand Government took steps towards implementing Article 33.2, by designating an independent mechanism. The Independent Monitoring Mechanism (IMM) is comprised of three different entities, which all play different roles within the mechanism. The New Zealand Human Rights Commission’s (Aotearoa New Zealand’s NHRI) primary role is to promote and protect human rights, including identifying areas where disabled people experience abuse and denial of their rights; the Office of the Ombudsman is in charge of monitoring the progress of UNCRPD implementation within the wider State sector and to make recommendations for improvements (Gough, 2015); and ‘the disabled peoples’ organisations, who are at any particular time members of the Convention Coalition operating under a Memorandum of Understanding’ (New Zealand Gazette, 2011, article C), provide the voices of civil society. In line with the Paris Principles, the IMM is resourced by the New Zealand Government, while remaining independent of political influence (Francis Watene, Mirfin-Veitch & Asaka, 2021). With regards to Article 33.3, in Aotearoa New Zealand this important role has been primarily fulfilled by the third component of the IMM – formerly the Convention Coalition, now known as the New Zealand Disabled People’s Organisation Coalition (DPO Coalition). Having accepted the recommendations made in the Coalition’s report, in 2010 the New Zealand Government granted the Coalition funding to carry out civil society monitoring duties under Article 33.3. The Coalition is currently comprised of seven organisations that meet Aotearoa New Zealand’s criteria for a DPO: Association of Blind Citizens New Zealand (Blind Citizens NZ); Balance Aotearoa; Deaf Aotearoa; Disabled Persons Assembly NZ (DPA); Kāpo Māori Aotearoa; Muscular Dystrophy Association of New Zealand Inc.; and People First New Zealand Ngā Tāngata Tuatahi (Office for Disability Issues, 2019a). With a resourced mandate to progress Article 33.3 of the Convention, the Coalition set about developing a system for the disabled person-led monitoring of the UNCRPD in Aotearoa New Zealand. In line with the international human rights monitoring project for disabled people, it was decided by the Coalition that the DRPI research methodology would be implemented. Through this framework, between 2010 and 2017 the Coalition contracted the services of more than 50 disabled people to interview and consult with over 398 disabled New Zealanders on subjects relating to income security, support services, accessibility, employment, health,

92  Research handbook on disability policy participation and poverty, acceptance in society, media and more (Office for Disability Issues, 2019b). Then, following a brief period of review and evaluation by Malatest International (2017 to 2018), the DPO Coalition appointed the Donald Beasley Institute (DBI) to conduct the monitoring research on their behalf (Office for Disability Issues, 2019c). With over 36 years’ experience in inclusive research methods founded on the social and human rights models of disability, the DBI was well placed as an independent research institute to bring life to Article 33.3, while building the capacity of disabled human rights researchers. This set-up of monitoring led by disabled researchers and funded by the government has been recognised as best practice for monitoring disabled people’s human rights (Pinto, 2015). At the time of writing this chapter, the DBI has already carried out three cycles of disabled person-led monitoring on disabled people’s experience of the right to housing and the highest attainable standard of health (Donald Beasley Institute, 2020a, 2020b, 2022). In keeping with the principles of the DRPI methodology and Article 33.3, the monitoring team has included a disabled project lead, disabled coordinator, disabled monitors (researchers), disabled transcribers, disabled writers and editors, as well as disabled translators (for official languages and accessible formats). In alignment with one of the three components of the DRPI monitoring framework – individual violations – semi-structured qualitative interviews were the primary data collection method, before being analysed using a general inductive approach. This analytical method is suitable for the purpose of monitoring and reporting as it allows for findings to emerge from the data without interpretation or presumption (Thomas, 2006).

DISABLED PERSON-LED MONITORING (HEALTH AND WELLBEING) Having completed the first two monitoring cycles on disabled people’s right to housing in 2019 and 2020, the DPO Coalition decided that the third cycle on monitoring would investigate disabled people’s right to the highest attainable standard of health (Article 25). Health and wellbeing was selected as the key topic for two reasons. The first being that issues surrounding health and wellbeing had strongly emerged in the findings of both housing reports, and second, there was a lack of recent, peer-reviewed, disabled person-led data on disabled people’s experiences of the national health system in Aotearoa New Zealand. However, as with many research projects scheduled to take place in 2020, the best laid monitoring plans were thrown into disarray as the impact of COVID-19 began to be felt. In March 2020, Aotearoa New Zealand went into strict physical lockdown, meaning that the DRPI research method could not be delivered face-to-face, as it had been in previous cycles of monitoring, as it was no longer safe for disabled people to travel and meet – whether as monitors (researchers) or interviewees (participants). Recognising that it was more important than ever to monitor disabled people’s human rights, the rapidly evolving circumstances of the pandemic saw the entire monitoring research project move online. Conducting virtual focus groups and interviews had both benefits and challenges. For example, it enabled some interviewees who would not have participated otherwise to partake in the monitoring research. This was particularly true for interviewees who identified as living with psychosocial disabilities or who experienced social anxiety, with one interviewee articulating that she ‘would have not participated if it was not for the online

Disabled person-led monitoring of the UNCRPD  93 interview’. Another group of interviewees who benefited from virtual interviews were disabled people living rurally, as monitors did not need to travel to conduct interviews, increasing accessibility and inclusion of the scope of disabled people who could participate. On the other hand, virtual interviews undoubtedly limited the personal interactions that occur with face-to-face engagement. For example, one challenge that arose during data collection was understanding and interpreting body language and non-verbal cues, especially when interviewees were sharing personal and traumatic health and wellbeing experiences. Other groups of disabled people who were at a disadvantage were those who did not have access to technology or resources to participate in online interviews, and communities such as Māori and Pacifica whose cultural practices place importance on face-to-face interactions, rapport and collectivism. While efforts were made to respond to these challenges, further work continues to ensure harder-to-reach populations can actively contribute to monitoring in a full and meaningful way. While COVID-19 enforced specific methodological adjustments on us, it has also been important to adapt the DRPI methodology in other ways to respond to the unique context of Aotearoa New Zealand (for further discussion, see Francis Watene et al., 2021). For example, given that health and wellbeing is a broad and diverse subject affecting disabled people in different ways, the most ethical way to ensure the sub-themes of the monitoring research were relevant, current and driven by the disability community, was to begin by consulting with disabled people themselves. Therefore, Phase One involved consulting with 157 disabled people (134 disabled people and 23 family, whānau and close supporters) through an online survey and focus groups on what health and wellbeing violations they would like to see investigated. It was intended that the findings from Phase One were then used to inform the research framework of Phase Two. During Phase Two, we interviewed over 100 disabled people and their family, whānau and close supporters over a period of six months. Of these, 87 interviewees identified as disabled, and 13 as family, whānau or close supporters of people with multiple and complex disabilities. Sixty-eight interviewees identified as female, 28 as male, four as non-binary, and one as transmasculine. Ethnically, 77 interviewees identified as Pākehā, 13 as Māori, eight as Pacifica, seven as Asian, seven as European, four as South African, and one identified as South American. Interviewees were located throughout Aotearoa New Zealand, with the youngest interviewee being 20 years old, the oldest interviewee was 77 years old, with a median age of 45 years. The types of disabilities interviewees self-reported included physical disabilities; sensory disabilities (including, but not limited to, deafblind, blind, low vision, Deaf, deaf, and hard of hearing); people with learning disability and neurodiversity; and people with psychosocial disabilities. Many participants identified as living with multiple disabilities. Once the data had been collected by disabled monitors, transcribed by disabled transcribers, and coded according to predetermined and emergent themes, the findings were then allocated to relevant sub-articles under Article 25 (Health) of the UNCRPD. At the end of each sub-article the monitoring team summarised how the findings were indicative of the lack of progressive realisation of the obligations contained within the sub-article, followed by a list of duty-bearing agencies and organisations that should be concerned. Health and wellbeing findings that were relevant to other UNCRPD articles were also noted (Donald Beasley Institute, 2022).

94  Research handbook on disability policy National Health and Disability System Review Another key factor that influenced the monitoring research was the fortuitous review and reforms of Aotearoa New Zealand’s national health and disability system that occurred during the monitoring cycle. In 2018, the New Zealand Government announced that it was launching a review into its national health and disability system; a review that was ‘charged with recommending system-level changes that would be sustainable, lead to better and more equitable outcomes for all New Zealanders and shift the balance from treatment of illness towards health and wellbeing’ (Health and Disability System Review, 2020, p. 3). Within the review, disability was considered under two systems. First, were disabled people’s experiences under the national health system. Second, were disabled people’s experiences as users of Disability Support Services (DSS), which provide essential day-to-day support services for disabled people. The review occurred simultaneously with the health and wellbeing monitoring. However, as was quickly highlighted by the disability community, even though the review acknowledged the severely inequitable health outcomes of disabled New Zealanders, the expert panel leading the review and the process of the review itself had failed to engage directly with disabled people as experts of our own health and wellbeing. As stated by the National President of the New Zealand Disabled Persons Assembly, Gerri Pomeroy: The Health and Disability Review Final Report shows that this review was – as we feared – a health review with disability tacked on … This was a chance to completely overhaul the disability support system, in the same way that the report is suggesting overhauling the health system. Instead the urgent need to transform disability support is conspicuous in its absence. (Disabled Persons Assembly, 2020)

Following the public launch of the review findings in 2020, in April 2021 the New Zealand Minister of Health, Andrew Little, and Associate Minister of Health (Māori), Peeni Henare, announced major reforms to the health and disability system based on the review’s findings. In his announcement, Minister Little acknowledged that ‘if you’re disabled, we don’t even know what is happening with you because we don’t gather enough information’, before relegating issues relating to disabled people’s health and wellbeing experiences to announcements at a later date (New Zealand Government, 2021). In October 2021 the New Zealand Government then confirmed the establishment of a new Ministry for Disabled People, which would subsume the DSS arm of the former health system, thereby ensuring a clear difference between disability services and health services (Ministry of Social Development, n.d.). While the core purpose of Aotearoa New Zealand’s approach to Article 33.3 monitoring has been to identify circumstances where the New Zealand Government is not meeting its obligations under the UNCRPD, it was important to note that April 2021’s announcement of health and disability system reforms also presented a vision of a health and disability system that could potentially address at least some of the health system-related concerns raised by disabled people throughout the monitoring research. This new information required the DPO Coalition and monitoring team to pause and rethink how best to proceed with the findings of the monitoring. Given that the Government had broadly committed to addressing some of the violations in the reforms, presenting the findings of the monitoring research as had been originally intended felt like a misuse of time, effort and the expertise of disabled monitors and interviewees.

Disabled person-led monitoring of the UNCRPD  95 For this reason, it was important to think beyond the mandate of contributing data and evidence to international reporting efforts, and to also consider how the findings might impact and contribute to the current reforms and subsequent policy design. With both the health and disability system review and consequential reforms acknowledging the lack of data on disabled people’s experiences of the system, meetings with Ministry of Health representatives were quickly scheduled, with the monitoring findings re-framed to reflect whether the proposed reforms had the potential to address the rights violations reported by disabled people or not. While these discussions continue, what has been immediately clear is that the review and proposed reforms were not developed with the human rights model of disability in mind. As prolonged and frequent users of the national health and disability system will know, this oversight is one example of how attempts to harmonise national policy with the UNCRPD can be undermined. It also indicates that much more work is needed to understand the human rights model of disability as an oppositional device that can challenge technologies of government that marginalise, disadvantage and disempower disabled people (Lawson & Beckett, 2021). The review and reforms referred to in this chapter have actively moved away from the medical model of disability and embraced the ethos of the social model by recognising existing barriers within the current health and disability system. However, there is little evidence of a human rights-based approach being utilised to guide policy responses to disability rights violations (Lawson & Beckett, 2021). Further to this, the lack of early and intentional engagement with disabled people during the conduct of the review is a timely reminder of the New Zealand Government’s obligation to ‘closely consult with and actively involve persons with disabilities, including children with disabilities’ in the ‘development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities’, as outlined under Article 4.3 of the UNCRPD (United Nations, 2006).

BEYOND INTERNATIONAL REPORTING – MAXIMISING THE POTENTIAL OF CIVIL SOCIETY MONITORING The intent of our chapter has been to explore the role, method and audience of civil society monitoring. The brief case study presented here is just one example of the potential of Article 33.3 to identify rights violations for international human rights reporting processes and to play a direct role in holding governments accountable to their human rights obligations, while actively influencing the development of national policies. Upon reflection, the success of the health and wellbeing monitoring cycle was achieved through a combination of factors. For example, having a well-trained group of disabled monitors meant that the monitoring team was able to pivot, adapt and respond to both the pandemic and the evolving political context of the national health and disability system review. Second, it was important to ensure that the monitoring research was rigorous and scholarly, while remaining inclusive and accessible. Even though lay reports and grey literature provide context and anecdotal evidence, the potential of the monitoring findings has been significantly improved by ethical and peer-review processes, including approval by New Zealand’s national Health and Disability Ethics Committee (HDEC). To ensure that monitoring can achieve its maximum potential, it must not only engage with the disability community, but build the

96  Research handbook on disability policy capacity of disabled researchers who are both experts of their own lived experience, as well as in the field of human rights monitoring. Finally, by focusing on a monitoring topic that aligns with the key focus area of the current New Zealand Government, the findings of the monitoring research have been immediately useful in informing policy. While this was not the original intent of the chosen subject, it has proven invaluable in the path towards progressively realising Article 25 (Health) in Aotearoa New Zealand. Next Steps As we look to further strengthen civil society monitoring efforts in the years to come, three questions remain at the forefront of the monitoring team’s work. The first concerns the role of civil society in collecting, verifying and using acquired information to address human rights problems. As previously discussed, Article 33.3 is flexible in its wording, leaving scope for a variety of activities and pathways towards its realisation. While ambiguous in its articulation, the intent remains clear: disabled people must remain at the forefront of monitoring the progressive realisation of the UNCRPD. As we engage in conversations about how to maximise the potential of civil society monitoring to affect change and actively contribute to ensuring national policies align with the Convention, the sense in Aotearoa New Zealand is that monitoring needs to move beyond contributing evidence of human rights violations to international reporting cycles. Instead, the focus must expand to include evidence-based advocacy at a policy level led by disabled people with human rights expertise. The second question relates to the evolution of the DRPI methodology – as it is adapted to reflect Aotearoa’s unique political, social and environmental landscape, while also considering how research methodologies can lead to better human rights-informed change and transformation. For example, how can monitoring provide data, evidence and examples of best practice when governments are meeting their human rights obligations, rather than solely highlighting instances where they are falling short? There is a growing body of organisational change literature regarding a conscious shift away from the default deficit-oriented views of social change and human rights, towards a strengths-based approach to research, evaluation and organisational change (Suntinger and Birk, 2020). For example, appreciative inquiry (AI) is an emerging methodology based on the premise that society moves in whatever direction it collectively, passionately and persistently asks questions about (Bushe, 2011). When human rights violations become the focus of a monitoring investigation, there is potential for those problems to grow. On the other hand, when best practice and positive experiences become the focus, they too can begin to flourish (Ludema, Cooperrider & Barrett, 2001). With the next cycle of disabled person-led monitoring in Aotearoa New Zealand set to investigate disabled people’s right to supports and services under the new Whaikaha Ministry for Disabled People and the national rollout of Enabling Good Lives (2022–2024), evidence of best practice and the meaningful realisation of disability rights has the potential to lead to better human rights-informed changes both domestically and internationally. Therefore it is important for strength-based research methodologies to be considered alongside the DRPI methodology in future iterations of civil society monitoring. The third question we continue to debate is who are the intended audiences of the monitoring findings, and how should these findings be presented and disseminated? In our case, rather than the target audience being the UNCRPD Committee alone, we are now exploring ways to

Disabled person-led monitoring of the UNCRPD  97 ensure that the findings are relevant and accessible to all stakeholders, whether it be civil servants, government officials, policy makers, the disability sector or the general public. In doing so, we hope to support a steady move towards a consistently human rights-based approach to policy design and implementation in Aotearoa New Zealand.

CONCLUSION This chapter has explored the origins of civil society monitoring according to the United Nations Convention on the Rights of Persons with Disabilities. Using Aotearoa New Zealand’s efforts to bring life to Article 33.3 of the UNCRPD, the case has been made for disabled person-led monitoring to move beyond simply monitoring disability rights violations, to utilising the rights model of disability to influence national policy design and development. Indeed, as an ‘unprecedented’ norm, Article 33.3 undoubtedly provides the pathway forward for exposing and maximising the potential and expertise of disabled people to lead the progressive realisation of the UNCRPD, and human rights monitoring in general, within our countries and beyond.

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Disabled person-led monitoring of the UNCRPD  99 Office of the High Commissioner for Human Rights. (1993). Principles relating to the Status of National Institutions (The Paris Principles). United Nations. https://www.ohchr.org/en/professionalinterest/ ​ ​ ​ ​ ​ ​ ​ ​ pages/statusofnationalinstitutions.aspx ​ ​ ​ ​ Office of the High Commissioner for Human Rights. (2001). Training manual on human rights monitoring: Professional training series No. 7. United Nations. https://www.ohchr.org/Documents/ ​ ​ ​ ​ ​ Publications/training7Introen.pdf ​ ​ Office of the High Commissioner for Human Rights. (2009). Thematic study by the Office of the United Nations High Commissioner for Human Rights on the structure and role of national mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities. United Nations. https://digitallibrary.un.org/record/680177?ln=e ​ ​ ​ ​ ​ ​ ​ ​ Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773 ​ ​ ​ ​ ​ ​ ​ Perlin, M. L. (2012). Promoting social change in Asia and the Pacific: The need for a disability rights tribunal to give life to the U.N. Convention on the Rights of Persons with Disabilities. The George Washington International Law Review, 44(1), 1–38. Perlin, M. L. (2014). ‘The ladder of the law has no top and no bottom’: How therapeutic jurisprudence can give life to international human rights. International Journal of Law and Psychiatry, 37(6), 535–542. Pinto, P.C. (2015). Conclusion: Debating disability rights monitoring: Strength, weakness, and the challenges ahead. In H. M. Rioux, C. P. Pinto, & G. Parekh (Eds.), Disability, rights monitoring, and social change (pp. 277–285). Canadian Scholars’ Press Inc. Quinn, G. (2009). Resisting the ‘temptation of elegance’: Can the Convention on The Rights of Persons with Disabilities socialise States to right behaviour? In O. M. Arnardóttir & G. Quinn (Eds.), The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian perspectives (pp. 215–277). Martinus Nijhoff Publishers. Retief, M., & Letšosa, R. (2018). Models of disability: A brief overview. HTS Teologiese Studies/ Theological Studies, 74(1), 1–8. https://doi.org/10.4102/hts.v74i1.4738 ​ ​ ​ ​ ​ ​ ​ Smart, J. F. (2009). The power of models of disability. Journal of Rehabilitation, 75(2), 3–11. Suntinger, W., & Birk, M. (2020). Appreciative inquiry: Mobilising potentials within police organizations to realize human rights. http://www.humanrightsconsulting.com/docs/Suntinger%20Birk ​ ​ ​ ​ ​ ​ ​ ​ ​ %20Appreciative%20Inquiry%20-Mobilising%20potentials%20within%20police%20organizations ​ ​ ​ ​ ​ ​ ​ ​ %20to%20realize%20human%20rights.pdf ​ ​ ​ ​ Thomas, D. R. (2006). A general inductive approach for analyzing qualitative evaluation data. American Journal of Evaluation, 27(2), 237–246. https://doi.org/10.1177/1098214005283748 ​ ​ ​ ​ ​ United Nations. (1948). Universal Declaration of Human Rights. https://www.un.org/en/about-us/ ​ ​ ​ ​ ​ ​ ​ universal-declaration-of-human-rights ​ ​ ​ ​ United Nations. (2006). Convention on the Rights of Persons with Disabilities: Articles. https://www.un ​ ​ ​ .org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -on-the-rights-of-persons-with-disabilities-2.html. ​ ​ ​ ​ ​ ​ ​ ​ United Nations Department of Economic and Social Affairs, Office of the High Commissioner for Human Rights, & Inter-Parliamentary Union. (2007). From exclusion to equality: Realizing the rights of persons with disabilities: Handbook for parliamentarians on the Convention of the Rights of Persons with Disabilities and its Optional Protocol (No. 14). United Nations. https://www.un.org/ ​ ​ ​ ​ disabilities/documents/toolaction/ipuhb.pdf ​ ​ ​ ​

8. Narrative 3: If my childhood can have CRPD’s company Honglu Zhu

I am a highly myopic girl from the southern mountainous area. The thick lens is the shadow in my life. In school, I encountered a great deal of trouble in learning. Even when I was wearing glasses I still could not see the blackboard. What made me more aggrieved was that everyone thought that my poor learning was my personal problem. I was sad to be different from others. My vision impairment caused me to sink deep into depression and feel inferior and ashamed. While others lived happily on campus, I was lonely and the students in my class despised me as a freak. The students constantly bullied and laughed at me, and when I suffered from campus bullying, the teacher’s inaction also left me helpless and with a cold heart. Now I recall the dark days when I was in school, and I can’t remember how I supported myself in those days. Maybe I vaguely understood at that time that hard work does not necessarily lead to opportunities, and if I don’t work hard, there will be no opportunities. It turns out that my persistence was right. Even if my physical appearance and character were ridiculed, I took a good cultural foundation forward, and now I have entered work, and in the economy I can also be independent. However, it turns out that prejudice and people’s misunderstanding of my vision condition because of visual impairment did not disappear when I left school. I remember once I was traveling alone in the train station and couldn’t find the location of the bathroom. I had to ask a cleaner in the station. They were rude and impatient, telling me to read the sign and, when I asked them to say the directions, exclaimed ‘I said there, don’t you see yourself?!’ At that time, I felt very angry, but also felt very helpless, suddenly stunned, and did not know what to do. This is just one of many similar sad experiences. In the past, when I had difficulty because of vision obstacles, I always touched the wall when I helped others, and I have had to go to others for help. I feel very anxious I will always think that if there is no vision barrier, will my life not be better? When I was a guest at the home of a disabled friend, I happened to see a magazine about the disabled community on his sofa and flipped through it. From that magazine, I came into contact with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) for the first time. Although the language of the Convention is a bit difficult to understand, I have been diligently learning, because I especially agree with the concept of respecting differences which I see in the Convention on the Rights of People with Disabilities. I often think that if I can have the CRPD’s companionship, if my vision barriers can be seen as a difference rather than a problem, then I may be more calm and accept my life. Maybe if more people know about the CRPD, they will try to understand my vision, and be willing to support me. 100

Narrative 3: If my childhood can have CRPD’s company  101 In May 2019, I had a very valuable opportunity to go to a UNESCO media communication and equality of disability workshop. In this way, I had a chance to learn more about the CRPD. In that workshop, the tutor gave us a stack of items, and asked us to fit these items into a shoe box in a specified time. One of the items was a biscuit, and our group did not hesitate to break the biscuit in order to fit it into the box. However, later I suddenly realized that we had ignored a lot of things when we finished the task. We all thought that the biscuits needed to be broken to fit the box, but we did not consider that the box is also problematic. It does not provide a suitable living environment for the biscuit. At the end of the workshop, I realized that each of us is different, we all have some individual needs that need to be respected, and we should not suffer prejudice and discrimination from society because of these differences. Since that time, I have been biting my teeth, because I know that many things can only rely on themselves, and don’t work well alone. When I meet the Convention on the Rights of Persons with Disabilities, I will slowly try to seek appropriate support, and try to help others to understand their rights. How I hope that one day more and more people will regard disability as a difference. At that time, other people will not suffer as hard as I did when I was a child. They will be able to move forward more confidently and have the courage to live their own unique life.

9. The right of people with disabilities to participate in cultural life: is Cinderella going to the ball? Delia Ferri and Ann Leahy

INTRODUCTION The right to participate in cultural life is deeply rooted in international human rights law, albeit being described as the ‘Cinderella of human rights’ because of it being neglected and lacking enforceability (Xanthaki, 2015). Article 27 of the Universal Declaration of Human Rights (UDHR) states that ‘everyone has the right to freely participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits’. Article 15(1)(a) of the International Covenant on Economic, Social and Cultural Rights (ICESCR) recognizes ‘the right of everyone to take part in cultural life’ (O’Keefe, 1998, p. 904). Other international provisions guarantee, to various extents, the right to cultural participation (Stamatopolou, 2007), and articulate collective rights of minorities and indigenous peoples (Kymlicka, 2008). The content of the right to participate in cultural life ‘remains contested’ (Bantekas et al., 2018, p. 865), but it is generally considered as encompassing a twofold individual dimension and a collective aspect (European Parliament Research Service (EPRS), 2017). The twofold individual dimension entails the right to access cultural activities, goods, and services (Romainville, 2015), and the right to active involvement in culture, including engagement in the creation of cultural products. The collective aspect refers to cultural communities being recognized and enabled to enjoy their cultural expressions. Article 27 UDHR and Article 15 ICESCR do apply to persons with disabilities1 without discrimination, but they failed to address their specific needs. This gap has been filled by Article 30 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which articulates the right of persons with disabilities to participate in cultural life, sport, leisure, and recreation. This provision has the merit of shedding light on the need for appropriate policies that enhance cultural participation of people with disabilities. However, it is one of the least studied CRPD provisions. While there are some legal commentaries on Article 30 CRPD (Bantekas et al., 2018; Manca, 2017), little scholarship addresses cultural participation (Tatic, 2015), compared to other areas covered in Article 30 (i.e. sports and tourism). With a view to filling a gap in the literature, this chapter argues that Article 30 plays a pivotal role in the realization of the human rights model of disability embedded in the CRPD by emphasizing the inherent dignity accorded to people through participation in cultural life (Degener, 2016). It critically discusses the implementation of this provision across several sample countries. While acknowledging the broad scholarly understanding of culture (Williams, 1981) which underpins human rights law, as the ‘set of distinctive spiritual, material, intellectual and emotional features of society or a social group’ (UNESCO, 2001, para. 5 of the preamble), this chapter focuses on arts practices and heritage (Caust, 2019). After 102

The right of people with disabilities to participate in cultural life  103 this introduction, the second section outlines the methodology, while the third discusses the right to participate in cultural life and embeds it in the human rights model of disability. The chapter goes on to analyze emerging trends, challenges, and gaps in the way States Parties to the CRPD approach the implementation of Article 30 CRPD, before providing concluding remarks.

METHODOLOGY This chapter presents a cross-country analysis of the implementation of Article 30 based on an examination of reports of States Parties to the CRPD, as well as Lists of Issues (LIs) and Concluding Observations (COs) made in respect of those reports by the UN Committee on the Rights of Persons with Disabilities (hereafter cited the CRPD Committee). The qualitative document analysis (Bowen, 2009) identified common themes, divergences, and trends related to the legal obligations laid out in this provision. Furthermore, we interpreted those themes, divergences, and trends through the lens of the human rights model of disability. The chapter adopts a socio-legal approach and is informed by the study of the relevant legal and disability studies literature. The 36 countries selected include 25 Member States of the EU that, at the time of writing this chapter, have filed reports with the CRPD Committee,2 and Argentina, Australia, Azerbaijan, Brazil, Canada, India, Mexico, the Philippines, South Africa, Tunisia, and the United Kingdom (UK) (Table 9.1). While the analysis of EU Member States and the UK is part of a larger pan-European research project,3 the selection of other non-EU countries is premised on the idea of maintaining a geographical balance and including countries that are part of the ‘Global South’ (Grech & Soldatic, 2016). Such a selection is based on two criteria. First, we considered States Parties that ratified the CRPD at least ten years ago, in order to be able to evaluate trends in the implementation of Article 30 across a relatively long time span, and to access cycles of all documents related to the reporting process under the CRPD. Second, we selected States with different legal systems (e.g. federal systems such as India and Australia, as well as unitary states such as Tunisia) and diverse legal traditions, as well as States that present different economic contexts (Mitra et al., 2013). This choice supports the goal of considering to what extent there are common trends in the way Article 30 is implemented that are independent of constitutional guarantees with respect to disability (World Policy Analysis Center, 2021), and of legal and contextual differences. We reviewed the initial reports of all the countries selected, and the combined second and third reports of 14 countries which were available up until May 2021 (Argentina, Australia, Austria, Azerbaijan, Belgium, Denmark, Germany, Hungary, Lithuania, Mexico, Slovakia, Spain, Sweden, and Tunisia). There were COs filed for 33 countries, and COs on combined second/third reports for two State Parties (Australia and Spain). The CRPD reports cited in the chapter were accessed at the CRPD Committee’s website,4 through multiple searches conducted between October 2020 and May 2021.

104  Research handbook on disability policy Table 9.1

CRPD reports reviewed

EU Countries (those that have submitted reports to the CRPD Committee) Austria 1. Belgium 2. Bulgaria 3. Croatia 4. Cyprus 5. Czechia 6. Denmark 7. Estonia 8. Finland 9. France 10. Germany 11. Greece 12. Hungary 13. Italy 14. Latvia 15. Lithuania 16. Luxembourg 17. Malta 18. Netherlands 19. Poland 20. Portugal 21. Slovakia 22. Slovenia 23. Spain 24. Sweden 25. Sub-total (EU) Selected Non-EU Countries Argentina 26. Australia 27. Azerbaijan 28. Brazil 29. Canada 30. India 31. Mexico 32. Philippines 33. South Africa 34. Tunisia 35. UK 36. Sub-total (Non-EU) Total

Reports of State Parties

2 2 1 1 1 1 2 1 1 1 2 1 2 1 1 2 1 1 1 1 1 2 1 2 2 34

2 2 2 1 1 1 2 1 1 2 1 16 50

List of Issues Concluding (LIs)a Observations (COs)b 2 1 2 1 1 1 2 1 1 1 2 1 2 1 1 1 0 0 1 0 2 1 1 1 2 1 1 1 1 1 1 1 1 1 1 1 0 0 1 1 1 1 2 1 1 1 2 2 2 1 33 23 1 2 2 1 2 1 2 1 1 2 1 16 49

1 2 1 1 1 1 1 1 1 1 1 12 35

Notes: a With the LIs, the CRPD Committee seeks further information from States Parties and highlights specific gaps in State Parties’ reports. b With its COs, the CRPD Committee formulates concerns and provides general recommendations on State Parties’ reports.

The right of people with disabilities to participate in cultural life  105

THE RIGHT TO PARTICIPATE IN CULTURAL LIFE AND ITS ESSENTIAL ROLE IN REALIZING THE HUMAN RIGHTS MODEL OF DISABILITY The first subsection will outline the core tenets of Article 30, while the second subsection will highlight the role of this provision in realizing the human rights model of disability and in affirming the inherent dignity of persons with disabilities. The Right to Participate in Cultural Life in Article 30 CRPD Article 30 CRPD provides inter alia for the right to participate in cultural life, which is the focus of this chapter,5 and articulates a range of obligations that are detailed in their normative content. Article 30(1) protects and promotes the right of persons with disabilities to participate in cultural life, in its twofold individual dimensions. As noted by Bantekas et al. (2018, p. 876) ‘[t]he emphasis on “participation” implies that the right to take part in cultural life is not confined to the freedom to enjoy (read: “consume”) culture, but also the freedom to pursue and contribute to every aspect of cultural life.’ It requires States Parties to take all appropriate measures to ensure that people with disabilities have access to cultural materials, television programs, films, theater, and other cultural activities, as well as to places where cultural performances are held, and to monuments and sites. This provision, echoing Article 9 CRPD, recognizes that accessibility is a precondition to ensuring cultural participation, as highlighted by the CRPD Committee in its General Comment No. 2 (CRPD Committee, 2014). It must be read in conjunction with Article 21 CRPD, which requires States Parties to provide information in accessible formats, to recognize and promote the use of sign languages, as well as to facilitate communication in Braille. Article 30(2) obliges States Parties to take appropriate measures to enable persons with disabilities to develop their creative, artistic, and intellectual potential. This encompasses the obligation to set up ‘specialized forms of training’ (Bantekas et al., 2018, p. 886). Furthermore, Article 30(3) requires States to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to the access of people with disabilities to cultural materials. The latter obligation relates primarily to copyright, which may constitute a barrier preventing cultural materials in accessible formats from being made available to people with disabilities (Sganga, 2015). In that regard, the CRPD is complemented by another international treaty aimed at ensuring access to printed materials for people with disabilities – the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (Marrakesh Treaty), adopted by the World Intellectual Property Organization in 2013. Article 30(4) provides for the recognition and support of the specific cultural and linguistic identity of people with disabilities, including sign languages and Deaf culture. It complements Article 21(e) CRPD, which, as noted above, requires States Parties to take measures ‘recognizing and promoting the use of sign languages’, and Article 24 CRPD addressing the linguistic identity of Deaf persons in the context of education (Murray et al., 2018). In particular, Article 24 provides for education to be inclusive and States Parties ‘are mandated to “facilitate and promote the linguistic identity” of [D]eaf persons on an equal basis, whereas Article 30(4) provides an individual entitlement to “recognition and support”’ (Bantekas et al.,

106  Research handbook on disability policy 2018, p. 909; emphasis added). Article 30(4) does not explicitly conceptualize Deaf people as a linguistic minority, even though it acknowledges the existence of Deaf culture. Ball (2011, p. 785) argues that ‘an essential feature of the CRPD’s model is the emphasis on balancing the preservation of the Deaf individual’s linguistic identity while achieving accessibility to public services for sign language’. Article 30(4) CRPD mandates State Parties to recognize the individual identity of Deaf persons, and leaves the door open to the recognition of Deaf communities as cultural minorities, but does not impose it. Notably, Article 30(4) does not use the terms ‘disability culture’ or ‘disability identity’ as ‘these terms remain controversial, including among the members of the disability community’ (Bantekas et al., 2018, p. 899; Johnson, 2020), but refers to cultural identity, which encompasses the manifold layers of a disabled individual’s identity. The Role of Article 30 CRPD in the Realization of the Human Rights Model of Disability The CRPD is said to encompass a social-contextual understanding of disability (Broderick, 2015), in which disability is understood as an interactive process between people with impairments and societal barriers, and, as such, is considered to be a more refined elaboration of the ‘pure’ social model (Ferri & Broderick, 2019). Furthermore, it is considered to embed the human rights model of disability (Degener, 2017; Lawson & Beckett, 2021), or to endorse a human rights approach to disability (Skarstad & Stein, 2018). Without engaging in a discussion of the various models of disability (Mitra, 2006), we limit ourselves to recalling some of the core tenets of the human rights model, by referring to one of its most authoritative proponents, Teresia Degener (2016, 2017), and to the CRPD Committee (2018a). Degener argues that this model does not focus purely on social and environmental barriers, but emphasizes the inherent human dignity of persons with disabilities, and ‘encompasses both sets of human rights, civil and political as well as economic, social and cultural rights’ (Degener, 2017, p. 44). She suggests that the human rights model values impairments as part of human diversity, pays attention to intersectional discrimination (Degener, 2017, pp. 47, 49), offering ‘room for minority and cultural identification’ (Degener, 2016, p. 9). Consistent with this, the CRPD Committee in its General Comment No. 6 (2018a) acknowledges that disability is a social construct, and conceives of it as ‘one of several layers of identity’. The recognition of the inherent dignity of people with disabilities is pivotal in the elaboration of the concept of inclusive equality embodied in the human rights model. Inclusive equality, as articulated by the CRPD Committee (2018a), embraces four intertwined dimensions: a fair redistributive dimension, which refers to the need to address socioeconomic disadvantages; a recognition dimension, which requires stigma to be combatted and respect for dignity and intersectionality; a participative dimension, which necessitates appreciation of the social nature of people with disabilities as members of society; and an accommodating dimension, which entails making space for difference as a matter of human dignity (CRPD Committee, 2018a). The latter dimension is underpinned by the idea of the diversity of individuals with disabilities from one another. It also refers to reasonable accommodation, which is any ‘necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms’ (Article 2 CRPD). This fourth dimension may also be linked with accessibility as

The right of people with disabilities to participate in cultural life  107 a precondition for the effective implementation and the full enjoyment of all the rights set out in the CRPD. The CRPD Committee and Degener do not directly articulate the right to participate in cultural life when elaborating on the human rights model of disability. Nonetheless, we argue that this right is encompassed by, and essential for the realization of, such a model in three respects. First, culture is the expression of human nature. Hence, the recognition of the right to access cultural activities on an equal basis is linked to respect for the inherent dignity of persons with disabilities. The freedom of creative activity implies the expression of everyone’s ‘layered’ identity. Second, and from a different yet interconnected perspective, cultural representations of disability have historically been negative (Shakespeare, 1994, 2014). Thus, the contribution of artists with disabilities is indispensable to the recognition of the inherent dignity of all disabled people. Smith and Stein (2020, p. 286) recall that, ‘[i]f fully harnessed, Article 30(2) CRPD (2006) will afford powerful opportunities for persons with intellectual disability to “[c]onfront the passivity that paternalistic and non-participatory models of disability typically evoke”’. Jakubowicz and Meekosha (2003, p. 190) suggest that disability culture seeks to revalorize disability experiences and affirms ‘different embodiments through literature, drama, sport and music’. Literature on artistic participation by people with disabilities stresses how this can lead to the articulation of identities and experiences that are otherwise overlooked (Saur & Johansen, 2013; Taylor, 2005). Relatedly, we contend that cultural participation is indispensable to combatting stigma and realizing the recognition dimension of inclusive equality. Third, enjoying culture is a vital part of being a member of society, and it is indispensable to achieving the participative dimension of inclusive equality. As noted by Smith and Stein (2020, p. 287), ‘Article 30’s implementation plays a vital role in furthering the CRPD’s transformative vision of persons with disabilities’ full-fledged membership in an inclusive society.’ This, however, can be actualized only when accessibility of culture is ensured and when the diversity of persons with disabilities is accommodated. We will not delve into a discussion of whether the human rights model of disability represents a development of the social model (Degener, 2017), or whether the two are complementary (Lawson & Beckett, 2021). We, however, embrace the view that the human rights model has a prescriptive nature, and ‘sets out standards of behaviour expected of States and institutions to ensure basic social justice for disabled people’ (Lawson & Beckett, 2021, p. 368). Thus, it is an apt tool to assess disability policies in the cultural field.

EMERGING TRENDS, CHALLENGES AND GAPS IN THE IMPLEMENTATION OF ARTICLE 30 CRPD In our analysis of States Parties’ reports, we identified divergences, general convergent trends, and efforts at realizing the human rights model of disability in relation to the implementation of Article 30 CRPD. Divergences and General Trends States Parties’ reports of the sample countries reviewed deal with Article 30 in different ways, and vary in the degree of attention that they give to it. Some State Parties, such as Argentina (CRPD/C/ARG/1), focus mostly on participation in sports, while other countries, such as

108  Research handbook on disability policy Australia, Bulgaria, Brazil, and South Africa, discuss the implementation of Article 30 quite broadly (CRPD/C/AUS/1; CRPD/C/BGR/1; CRPD/C/BRA/1; CRPD/C/ZAF/1). The degree of thoroughness in dealing with this provision does not appear to be linked to a particular legal system or tradition. Furthermore, a lengthy response is not necessarily representative of a thoroughgoing, systematic approach to addressing cultural participation. Among the countries considered, the Australian report was notable in its reference to a comprehensive cultural policy plan related to people with disabilities. The National Arts and Disability Strategy ‘focuses on access and participation of persons with disabilities, barriers which prevent emerging and professional artists and arts workers with disabilities from realising their ambitions, and audience development’ (CRPD/C/AUS/1, para. 186; see also the ‘Action Plan’ referenced in the initial Danish report, CRPD/C/DNK/1, para. 334). In general, while some States Parties’ reports refer to strategies within particular sectors or to digitization strategies,6 under Article 30 they could outline in more detail to what extent cultural participation is addressed in them and in national disability strategies. However, some of the countries considered include culture as a priority field of action in their overall domestic disability strategy. For example, the Bulgarian National Strategy for Equal Opportunities for Disabled People 2008–2015 and the subsequent National Strategy 2016–2020 included among its specific objectives that of providing equal opportunities for sports, recreation, tourism, and participation in cultural life (Bulgarian Government, 2008, 2016). Several reports tend to list single initiatives that possibly entail good practices, but do not provide strong evidence of a systematic approach to the implementation of Article 30 and seem to signal the lack of a comprehensive policy approach. For instance, there are quite a few initiatives referred to in the initial reports of India (CRPD/C/IND/1) and of Croatia (CRPD/C/ HRV/1). The degree to which these initiatives might represent a strategic approach to meet the obligation provided in Article 30 remains unclear, and, in fact, in the case of those two countries, subsequent COs from the CRPD Committee express concern about levels of participation in cultural life (CRPD/C/IND/CO/1, paras 62–63; CRPD/C/HRV/CO/1, paras 47–48). Given that Article 30(3) explicitly obliges States Parties to ‘take all appropriate steps, in accordance with international law, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials’, the majority of the States Parties’ reports reviewed included a reference to copyright laws and/or to ratification of the Marrakesh Treaty. Correspondingly, a focus on copyright issues is a feature of several LIs and COs. Thus, where a recommendation under Article 30 is made in the COs, it frequently concerns ratifying or implementing the Marrakesh Treaty. This trend had been already observed by Bantekas et al. (2018). Overall, States Parties’ reports did engage with the right to participate in cultural life somewhat signaling that this right is no longer a ‘Cinderella’, and is engaged with by certain countries in some detail. In some instances, where a second/third report is available, it is possible to note a developing engagement with Article 30 CRPD in the subsequent report. For example, the second/third report from Mexico (CRPD/C/MEX/2–3) deals with Article 30 at length. It lists a series of examples of arts/culture events – such as accessible films, an adapted dance program, an accessibility program at museums in Mexico City, and a program (SensibilizArte) ‘which promotes artistic development and coordinates guided tours and workshops for persons with disabilities’ (para. 285).

The right of people with disabilities to participate in cultural life  109 A Slow Move towards Meaningful Participation in Culture and Recognition of Inherent Dignity The analysis of the reports shows that States Parties to the CRPD may be starting to view cultural participation as a facilitator of self-expression for people with disabilities, underpinning an affirmation of their dignity. For example, the Latvian report (CRPD/C/LVA/1, para. 370) mentions various opportunities for Deaf people, citing ‘a variety of creative self-expression measures’. The Lithuanian report refers to ‘artistic ability development classes’ (CRPD/C/ LTU/1, para. 305) and the Brazilian report indicates cultural activities aimed at the ‘development of skills for the expression of creativity and perception’ (CRPD/C/BRA/1, para. 247). The Slovakian report mentions the availability of ‘active and passive culture’ (CRPD/C/ SVK/1, para. 390); likewise, the second/third report of Tunisia refers to people with disabilities benefitting from cultural activities ‘as both recipients and participants’ (CRPD/C/ TUN/2–3, para. 204). States Parties’ reports show less awareness of people with disabilities as professional creators of culture in their own right. Nonetheless, some of them are explicit about professional participation or refer to arts organizations that include disabled and non-disabled artists side-by-side. For example, the initial report from Australia mentions the need to address barriers faced by professional artists and arts workers. It also references programs that support the production of art by disabled people (CRPD/C/AUS/1, paras 186–188). The initial report from Sweden recognizes both ‘personal creation’ and contributing to ‘professional artistic creation’ (CRPD/C/SWE/1, para. 282). That report also states that professional theater and dance groups may increasingly ‘include actors and dancers both with and without disabilities’ (para. 289). The initial report of South Africa mentions the Performing Arts Policy requiring that 5 percent of performers ‘contracted for celebration and/or commemoration of national days should be disabled’ (CRPD/C/ZAF/1, para. 354). While disability arts are no longer seen as needing to engage exclusively with disability issues (Solvang, 2012) or to be about educating others, in some States Parties’ reports, cultural participation of persons with disabilities is linked to the idea of combatting stigma. For example, the initial report from Croatia includes a reference to support both for people with disabilities who are artists and to events that seem to aim at educating others. It mentions financial support for projects ‘…that sensitise the public for artistic work of persons with disabilities and specific theatres of persons with disabilities’ (CRPD/C/HRV/1, para. 217). The initial report from India (CRPD/C/IND/1, para. 263) states (albeit using outdated language) that, in order ‘to safeguard and recognize the interests of the person with disabilities’, the Central Board of Film Certification uses a set of guidelines, one of which ‘mandates that while granting certificates to films, the Board must ensure that scenes showing abuse or ridicule of physically and mentally “handicapped” persons are not presented needlessly’. Accessibility of Cultural Goods and Services and Awareness of Accommodating Human Diversity Accessibility of cultural knowledge depends on the complex interplay between a specific person’s individual characteristics and the environment (Mastrogiuseppe et al., 2020). States’ reports often focus not just on physical accessibility, but also on the accessibility of content of arts, cultural, and heritage products designed to be inclusive. Many reports refer

110  Research handbook on disability policy to an array of sectoral legislation, policies, funding tools, and specific initiatives designed to make cultural products like films, audio-visual products, theaters, exhibitions, or content of libraries, museums, or heritage sites accessible. In the case of cultural venues, the report from Czechia states that museums progressively ‘make all expositions and exhibitions accessible’ (CRPD/C/CZE/1, para. 449). That report also instances a venue with a tactile exposition, the digitalization of content, and a festival where Deaf people are said to constitute over half of the participants (CRPD/C/CZE/1, paras 456–460). Other examples are seen in the initial report of Australia, which refers to the NSW Government’s cultural institutions incorporating multi-sensory and tactile features into exhibition design, the provision of sensory tours, interpreted tours in Auslan, and Braille guides (CRPD/C/AUS/1, para. 187). The Estonian report mentions theaters using text strips and sign language interpretation, loop systems, subtitling of films, and inclusivity of cultural sites, museums, and galleries (CRPD/C/EST/1, paras 220–228; see also the Latvian report, CRPD/C/LVA/1, paras 365–370). Some reports refer to libraries specifically for blind and visually impaired people. For example, the Danish report mentions a state-owned library producing audio books, e-books, and Braille for visually impaired and dyslexic people (CRPD/C/DNK/1, para. 337; see also the initial report of South Africa, CRPD/C/ZAF/1, para. 355). Less common are references to Sign Language libraries, but the Finnish report mentions one (CRPD/C/FIN/1, para. 444) and the second/third report from Mexico refers to a ‘Mexican Sign Language room’ at one library which, inter alia, ‘offers reading in sign language’ (CRPD/C/MEX/2–3, para. 287). Also unusual were references to visual arts being made accessible for visually impaired people. However, the report from Estonia mentions improvements to the accessibility of the Art Museum of Estonia for mobility, visual, hearing, and intellectually disabled people (CRPD/C/ EST/1, para. 224). Film is another area of focus in some reports. For example, the initial German report highlights that the Film Promotion Act supports audio-description for visually impaired persons and subtitling for persons with hearing disability and provides incentives ‘for the creation of barrier-free versions of cinema films’ (CRPD/C/DEU/1, para. 262). The initial report from Australia refers to support for commercial cinema for audio-description and captioning technology to improve access for people who are Deaf or blind (CRPD/C/AUS/1, para. 187). In most cases, it is difficult to grasp from States’ reports how effective those legislative measures or policies are in practice, but there is certainly a growing awareness of the need to take the diversity of people with disabilities into account. An explicit aspect of recognizing and accommodating diversity is the protection of sign language afforded by Article 30(4). Though this was not universal across the reports reviewed, many countries refer to measures taken, or planned, towards the recognition of sign language as an official language, or of sign language users and Deaf people as a linguistic or cultural minority (among others, reports of Argentina, CRPD/C/ARG/1, para. 279; Azerbaijan, CRPD/C/AZE/2–3, para. 37; Belgium, CRPD/C/BEL/1, para. 97; Croatia, CRPD/C/HRV/1, para. 17; Finland, CRPD/C/FIN/1, para. 259; Hungary, CRPD/C/HUN/1, para. 17; Lithuania, CRPD/C/LVA/1, para. 158). The Finnish report represents an interesting case in its level of detail, referring to sign language users as a ‘language and cultural minority’ and to different groups of sign language users (CRPD/C/FIN/1, paras 257–261). Interestingly, however, several reports to the CRPD Committee deal with sign language most extensively under the implementation of Article 21, rather than under Article 30. In this regard, sign language seems to be conceived of more as an accessibility measure, without a full awareness of Deaf culture.

The right of people with disabilities to participate in cultural life  111 Existing Gaps and Remaining Challenges While, as mentioned above, some reports seem to acknowledge the dignity of people with disabilities, there are still traces of medical approaches. For example, the Polish report refers to ‘library therapy and art therapy’ for blind people (CRPD/C/POL/1, para. 514), while the combined second/third report from Lithuania mentions NGOs offering ‘social rehabilitation services’ that involve ‘self-expression and cultural activities’ (CRPD/C/LTU/2–3, para. 248). Likewise, the report from Czechia includes reference to ‘art-therapy’ and support for projects that exploit the ‘therapeutic function of culture in order to compensate for disadvantages on account of health’ (CRPD/C/CZE/1, para. 452). In a somewhat ambiguous section, the report from the Philippines mentions ‘cultural care giving services for persons with disabilities’ (CRPD/C/PHL/1, para. 259). Other reports refer to (or imply) lack of health, or inability. For example, the initial report from Azerbaijan mentions activities aimed at the ‘integration of persons with disabilities and children with impaired health to the society’, which aim to ‘equalize them with healthy persons and to reveal their talents and abilities…’ (CRPD/C/ AZE/1, para. 311). The Estonian report mentions public libraries organizing home deliveries for people unable ‘to visit the library due to health reasons’ (CRPD/C/EST/1, para. 230). Thus, while the initiatives themselves may add value to the lives of the people involved, we contend that accessibility or inclusion measures seem to be understood as necessary because of the medical conditions of individuals, not in terms of the human rights approach to disability enshrined in the CRPD. Sometimes, States’ reports refer to cultural activities in terms of education about disability issues amongst the general public or people working in cultural sectors, as already mentioned. Awareness-raising initiatives may be valuable, but some of these references suggest that disability is still constituted as an individual problem requiring a charitable response. For example, Hungary’s initial report mentions support for people with disabilities regarding ‘public education programmes’ and public education conferences are described as opportunities for people with disabilities ‘to report their own problems’ (CRPD/C/HUN/1, para. 236). The CRPD Committee sometimes highlights the issue of medicalization, identifying, for example, in COs for the Philippines (CRPD/C/PHL/CO/1, para. 6), the ‘prevalence of the medical and charity approaches in the State party’s legislation and policies … overemphasizing impairment, medical treatment and social care’. The growing awareness about accessibility shown in States’ reports tallies with a range of good practices on access to cultural goods and services highlighted by gray literature (Arts & Disability Ireland, 2010) and scholarship (Arenghi et al., 2016). However, this is counterbalanced by the bittersweet picture emerging from shadow reports submitted to the CRPD Committee, which, where they deal with culture, detail the inadequate accessibility of cultural offerings or lack of recognition in practice of Deaf culture. An example comes from the report submitted by the coalition of civil society organizations in Denmark (Disabled People’s Organisations Denmark, 2019, p. 48). This suggests that many cultural institutions, such as theaters, museums, and cinemas, are not accessible either in terms of the physical accessibility of buildings or digital accessibility of apps, websites, or content. Furthermore, sometimes States’ reports themselves refer to the views of civil society organizations that the measures taken are inadequate (see initial Austrian report, CRPD/C/AUT/1, para. 340). States’ reports provide limited information about the rates of cultural participation of persons with disabilities. Exceptions in this respect are the reports from Estonia and the

112  Research handbook on disability policy UK, which cite surveys suggesting that the number of people with disabilities participating in culture is relatively low (CRPD/C/EST/1, para. 227; CRPD/C/GBR/1, para. 327). The Estonian report also identifies the main obstacles to participation as low incomes, poor health conditions, poor physical accessibility to venues, and lack of supportive services (transportation, personal assistance service) (CRPD/C/EST/1, para. 227). The overall low cultural participation rates observed in those two reports seem, in reality, to constitute a general challenge, highlighted in a range of studies and sometimes in national disability strategies (although omitted in States Parties’ reports). For instance, the European Blind Union (EBU, 2012, p. 7) survey on access to culture shows that people with visual impairments have poor access to culture, and maintains that ‘[m]ost cultural funding pays little attention to the cultural equality of people with a (visual) disability’. In a survey from the World Blind Union and American Council of the Blind (2018) almost all participants (99%) claim that audio-description (which makes visual information of media and arts more accessible) needs to be more widely available. Martínez Amador (2016), in her provocatively titled paper ‘Deaf people do not go to the movies’, highlights the lack of accessibility of Spanish cinemas. An Italian report shows that there is widespread exclusion of disabled people, for whom lower levels of participation in culture are recorded compared to the rest of the population (Istituto Nazionale di Statistica (ISTAT), 2019, p. 99). A study carried out in 35 European countries suggests that there is limited knowledge of artists with disabilities (British Council, 2021). Furthermore, the Dutch implementation plan of the CRPD finds that people with disabilities participate less in cultural activities (Government of the Netherlands, 2018), while the German policy plan notes that persons with disabilities visit fewer cultural events than people without disabilities (Federal Government of Germany, 2018). We contend that these challenges and gaps have not yet been adequately highlighted in COs by the CRPD Committee. The Committee consistently calls on States to improve accessibility, to enhance data collection, and to adopt an approach to disability consistent with Article 1(2) CRPD, but relatively little is recommended as to cultural participation. As yet, the most typical recommendations under Article 30 have a relatively narrow focus, on issues of copyright. The need for enhancing a range of accessible formats – sign language interpretation, Braille, subtitles, Easy to Read, augmentative and alternative modes of accessible communication for people with intellectual or psychosocial disability – is often raised by the CRPD Committee under Article 21 CRPD (dealing with freedom of expression and access to communication). In this context, the Committee has not yet focused on the recognition and accommodation of diversity, although COs for Estonia issued in May 2021 (CRPD/C/EST/CO/1, para. 43(b)) refer to the need for awareness raising about ‘[D]eaf culture and the Estonian sign language’. While a common recommendation concerns enhancing access to sign language interpretation, this often relates to access to justice, communication, or public information, and only rarely are there specific recommendations on access to culture (for an exception see COs for Cyprus CRPD/C/CYP/CO/1, paras 45–46). The careful approach of the CRPD Committee in its COs seems to be an attempt to overcome the competing tensions between a growing awareness of sign language as a matter of individual identity requiring accommodation, and the appreciation of promotion-oriented minority language-type policies. This careful approach tallies with the views adopted by the CRPD Committee upon individual communications. In J.H. v Australia (CRPD Committee, 2018b), the failure to provide a sign language interpreter to a juror was considered. The Committee recalled that, pursuant to Article 21(b) CRPD, States Parties must take all appro-

The right of people with disabilities to participate in cultural life  113 priate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive, and impart information and ideas on an equal basis with others and through all forms of communication. Additionally, the Committee recalled Article 21(e) CRPD, which stipulates that those measures include recognizing and promoting the use of sign languages. The CRPD Committee ascertained the violation of the principle of equality and stated that the ‘refusal to provide Auslan interpretation, without thoroughly assessing whether that would constitute a disproportionate or undue burden’, amounted to a discrimination on the basis of disability. Further, the CRPD Committee held that ‘the refusal to provide the author with the format of communication that she needed to enable her to perform jury duty, and therefore to express herself in official interactions’ amounted to a violation of Article 21(b) and (e) CRPD. In its assessment, however, the CRPD Committee did not engage in any appreciation of Deaf culture. A similar approach, although in dissimilar circumstances, had already been adopted in Beasley v Australia (CRPD Committee, 2016a) and Lockrey v Australia (CRPD Committee, 2016b). A different (yet very nuanced) approach is taken in Sahlin v Sweden (CRPD Committee, 2020) in which the CRPD examined a refusal of sign language interpretation for a lecturer at a Swedish University. In that case, despite his qualifications, the University had annulled the recruitment process, claiming that it would be too expensive to finance sign language interpretation to guarantee the author’s right to employment on an equal basis with others. The reasoning of the CRPD Committee, which, in the end, ascertains a violation of Articles 5 and 27 CRPD, revolves around the concept of reasonable accommodation and that of accommodating diversity. While neither the author of the communication nor the CRPD Committee address the issue of identity, the Committee endorses the view of the author that Swedish authorities ‘did not take into account the positive impact that hiring a deaf lecturer could have had on the attitude of students and co-workers to promote diversity’ (emphasis added).

CONCLUDING REMARKS: OPERATIONALIZING THE HUMAN RIGHTS MODEL IN THE CULTURAL FIELD The role of culture in the production of disability is acknowledged in disability studies (among others, Titchkosky, 2003; Waldschmidt, 2018). Beyond this area of scholarship, the recognition that culture plays an essential role in ending the marginalization experienced by persons with disabilities in society is more recent and has been driven by the implementation of the CRPD. Legal and socio-legal scholarly work on Article 30 CRPD is scant, and this chapter aims to address that gap. The analysis of reports to the CRPD Committee seem to signal that the right to participate in cultural life is no longer a ‘Cinderella’, namely, State Parties’ reports engage with access to arts, and, in some instances, recognize that cultural participation is key to combatting stigma and stereotypes. However, in order to fully operationalize the human rights model in the cultural field, a more consistent approach should be adopted. Comprehensive and participatory cultural policy plans related to people with disabilities could foster a systematic approach to the right to participate in cultural life in its twofold individual dimension and collective aspects. Such plans should accommodate the diversity of audiences with disability. They should also foster creation by artists with disabilities, through dedicated training and funding activities, without confining disabled people merely to amateur cultural practice or

114  Research handbook on disability policy therapeutic art. This is important to challenge the assumptions that disability art is merely ‘a hobby or form of therapy’ rather than a professional endeavor (Bang & Kim, 2015, p. 543). In order to effect change, inclusive cultural infrastructures and practices must be promoted by States Parties. In that connection, employment of persons with disabilities within creative industries in all roles is also imperative. Disability cultural policy plans should complement national disability strategies and employment strategies, fostering the mainstreaming approach that is mandated by Article 4 CRPD. Finally, the role of the CRPD Committee in pointing States Parties in the right direction is important. As yet, gaps and challenges have not yet been adequately tackled by the CRPD Committee, but a more comprehensive approach is beginning to appear in COs. The human rights model is being used overtly to assess the implementation inter alia of Article 30. For example, the LIs on the initial report of Brazil (CRPD/C/BRA/Q/1, para. 34) from 2015 require information on ‘whether the State party has taken measures to make libraries and other cultural services accessible to all persons with disabilities’ and on ‘any measures planned for introducing the human rights model of disability in cultural life’ (emphasis added). The COs for the Philippines from 2018, in dealing with Article 21 CRPD, express concern with the ‘lack of recognition and support of the specific cultural and linguistic identity of persons who are deaf through the promotion of Philippine sign language and deaf culture’ (CRPD/C/ PHL/CO/1, para. 38 – emphasis added). In a similar but less explicit vein, the COs for India (CRPD/C/IND/CO/1), from 2019, include a recommendation on Article 30 CRPD that is broader than copyright issues and makes reference to the necessary recognition of ‘cultural identities’ and participation of people with disabilities in cultural performances (para. 63). It is vital for the CRPD Committee to provide clearer recommendations to States Parties beyond the issue of copyright, and to engage with the content and obligations of Article 30 in light of the human rights model to harness the slow move towards the meaningful participation in culture of persons with disabilities and the recognition of their inherent dignity and diversity. Furthermore, States Parties should collect data on cultural participation and use them to design evidence-based policy solutions and effect change. The indicators designed to monitor the CRPD (Office of the High Commissioner for Human Rights (OHCHR), 2021), and scholarly efforts to produce indicators based on national surveys (Mitra & Yap, 2021), may support data collection and effective policies. As the metaphor used in the title of our chapter aims to highlight, Cinderella has received an invitation to the ball, but it remains unclear whether she is actually participating. In other words, while there is a move towards operationalizing the human rights model of disability in the field of culture, there is still a gap between the aspirations of Article 30 and its implementation.

ACKNOWLEDGMENTS This chapter is part of a larger research project entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ which commenced in September 2020 (https://​ercdancing​ .maynoothuniversity​.ie/​). This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (Grant Agreement No. 864182).

The right of people with disabilities to participate in cultural life  115

NOTES 1.

2. 3. 4. 5. 6.

Start of endnote. In this chapter we use person-first language in line with the CRPD (Kakoullis & Johnson, 2020; Broderick & Ferri, 2019). This terminology acknowledges individual abilities by placing the person before a disabling ‘identifier’ (Sabatello, 2019). Only occasionally, to avoid repetition, we use ‘disabled people’. However, we acknowledge that, among disability groups and scholars, different terms are used. End of endnote. Start of endnote. The chapter takes into account legal updates up until May 2021. At the time of writing this chapter, two of the 27 EU countries (Ireland and Romania) had not yet submitted initial reports. End of endnote. Start of endnote. This research project is entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ and has received funding from the European Research Council. End of endnote. Start of endnote. See https://www.ohchr.org/EN/HRBodies/CRPD/Pages/CRPDIndex.aspx. End of endnote. Start of endnote. Article 30(5) CRPD focuses on the participation of people with disabilities in recreational, leisure, and sporting activities, which must be ensured ‘on equal basis with others’, but these obligations remain outside the scope of this chapter. End of endnote. Start of endnote. See the report from Slovakia (CRPD/C/SVK/1, para. 385), which mentions a strategy for development of museums and galleries, and the initial report from Sweden which references a national strategy for digitization, electronic access, and digital curation (CRPD/C/SWE/1, para. 282). End of endnote.

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10. When the state does not care: disability rights in a context of multi-layered crises, instability and disablism Grace Khawam and Supriya Akerkar

INTRODUCTION The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) proposes to be the key guarantor for the rights of people with disabilities worldwide. However, it is criticized for its conceptualizations of individualized legal rights, in assumedly stable contexts where rights are state-protected (Meekosha, 2011; Lang et al., 2011; Meekosha and Soldatic, 2011). It is unclear how disability rights can be advanced in unstable and crisis-affected contexts in the Global South, especially non-signatory states. Lebanon presents an interesting case for such a context. A small country of the Middle East with Oriental and Western influences, the country has a tumultuous history of war and humanitarian crises, and constant instability at political, security and economic levels. It has witnessed a 15-year civil war (1975–1990), multiple Israeli bombardments and aggressions, a full-fledged war against Israel in July 2006, and two protracted refugee crises (the Palestinian refugee crises in 1948 and 1967, and the Syrian refugee crisis in 2011). In the past two years alone, Lebanon has witnessed multi-layered crises which have deeply affected the lives of all its residents. First, an unprecedented economic and financial crisis, ranked by the World Bank as being among the three worst crises in the world since the mid-19th century, with a rising inflation rate and a massive depreciation of the local currency (The World Bank, 2021). Second, political and civil unrest, after the Lebanon Uprising of October 2019 (“thawra” or revolution in Arabic), where thousands gathered in the streets to protest the dire living conditions and called upon governmental action. Third, the COVID-19 pandemic, which hit Lebanon a few months later, and where the initial governmental response to the pandemic was qualified as inadequate, with excessively strict lockdowns imposed that further exacerbated the economic downfall of the country (ILO and FAFO, 2020). Lastly, on 4 August 2020, a massive explosion that hit the heart of Beirut, due to a fire in a warehouse where 2750 tons of ammonium nitrate had been unsafely stored at the Port of Beirut due to governmental neglect (Geha, 2021). This resulted in a humanitarian disaster and was described as one of the most powerful non-nuclear explosions in history. These conflicts and disasters in Lebanon have historically exacerbated the dire situation of people with disabilities in Lebanon, with the destruction of rehabilitation institutions and increasing numbers of war injuries and war-afflicted impairments (Kabbara, 2012; Kingston, 2013). It is estimated that 10–15% of the population in Lebanon have a disability (Combaz, 2018), and more than 102,149 individuals are holders of the Disability Card (Abdallah, 2017). People with disabilities in Lebanon face a systemic lack of access to and provision of services, rights and resources. More than 80% are unemployed, and less than 1% access public 118

When the state does not care  119 education (Combaz, 2018). Healthcare services lack accessibility and affordability (Baroud, 2017). The Beirut Explosion also created “new disabilities” with approximately 800 people developing a chronic impairment due to injury, and these people have not received from the government any kind of compensation, free access to healthcare and needed surgeries, or work allowance due to the loss of livelihoods after the explosion (Hammoud, 2021; Ghsain, 2021). The state has also failed to ratify the UNCRPD, making Lebanon one of the 12 remaining non-signatory states in the world1. The main assumptions in common human rights discourses, which are also insinuated in the UNCRPD, are that (1) policies are state-led, disability rights are state-protected, and state capacity is assumed; (2) the context offers a certain level of stability to sustain policies and practices that promote disability rights; and (3) systems and policies to further disability rights seem to be independent of language, culture, religion and ethnicity (Meekosha, 2011; Lang et al., 2011; Akerkar et al., 2016; Akerkar, 2007; Akerkar and Devavaram, 2015). In contrast, Lebanon presents a complex context of instability, multi-layered crises, a segmented sectarian-based political system coupled with disablist2 governance (Khawam, 2020), in a non-signatory state of the Global South. The aim of this chapter is to explore how disability rights can be advanced in such a context, with a focus on the following research questions: 1. What are the contextual and political obstacles and challenges to disability policy formulation in Lebanon and how do they hinder/limit disability rights activation? 2. Which actors, dynamics, mechanisms and strategies influence the policy discourse in Lebanon towards disability rights activation? 3. How has the disability rights movement navigated through the Lebanese context to further the human rights of people with disabilities? 4. What learning can be gained for disability rights mobilization from the Lebanese case? Learning from the Lebanon context can be relevant not only in non-signatory states and/or conflict settings, but also in many international contexts where disability rights remain poorly enacted, and where the implementation of the UNCRPD continues to be lacking, due to limited state capacity, insufficient accountability measures and/or rampant discrimination (Aldersey and Turnbull, 2011; United Nations Department of Economic and Social Affairs, 2019).

METHODOLOGY Methods used include a critical review of the Lebanese disability policy context in academic and grey literature, and transcript analysis from interviews with seven disability activists in Lebanon, including four self-advocates,3 carried out between October 2020 and May 2021. Each self-advocate holds either a founding and/or leadership role in an organization of people with disabilities (OPD) in Lebanon. The other activists (who are not self-advocates) are parents of young people with intellectual disabilities. These interviews were part of a doctoral research project on job readiness among youth with intellectual disabilities in Lebanon,4 and aimed at developing a better understanding of disability rights and the disability policy context in Lebanon. Analysis in this chapter will explore tensions, power relations and dynamics in the disability policy process in Lebanon and explore who are the makers and users of the disability policy discourse.

120  Research handbook on disability policy The research methodology used is qualitative and is based on political activist ethnography, which focuses on “producing knowledge that can be mobilized by civil society activists and members of social movements” (Bisaillon, 2012, p. 608), and where the researcher’s aim is to expand their knowledge “to grasp how a ruling regime works with a view to transforming it” (Smith, 1990, p. 629). G.K. (author) is a researcher, disability activist and a disability service user (having a daughter with a disability) based in Beirut, Lebanon. Through this research project, she explores the disability rights movement in Lebanon across history and throughout the current crises, while acknowledging her own role in the disability movement5 and personally experiencing the crises while residing in Lebanon. S.A. (co-author) is an academic based in Oxford, UK, and an advocate for human rights and disability rights in the Global South. She is also involved with the disability rights movement in Lebanon.6 The co-authors provide an insider–outsider perspective to the issue of disability rights in Lebanon. The conceptual framework for analysis is based on the policy-as-discourse theory, coupled with human rights and development studies perspectives. Policy-as-discourse perceives social problems (and hence policy problems) not just as a matter of whether a specific policy has been advanced or opposed, but as socially constructed through the policy discourse of the various interest groups and actors involved (Bacchi, 2000; Shaw, 2010). The focus of policy analysis hence is not in the “problems”, but in the “problematizations”, namely how policy problems are identified and analysed, and how solutions are addressed (Kriztman, 1988 as cited in Bacchi, 2000, p. 48). This framework is relevant to be used in analysing the Lebanese context where, given the lack of disability policy (or lack of its implementation), it is pertinent to explore the problematization of disability discourse in policy and political discourses.

LEBANON’S APPROACH TO GOVERNANCE AND SOCIAL POLICY Before addressing disability policy and the advancement of disability rights, it is important to provide some background on public governance and social policy in Lebanon. The country’s social geography is complex and diverse and represents the most concentrated mix of ethnic and religious groups in the Arab Region (Jawad, 2002). Twenty-six per cent of the residents are estimated to be non-Lebanese (data extrapolated from UNHCR, 2020). There are 18 constitutionally recognized ethnoreligious subgroups known as “sects”, belonging to three religions, with the most prominent sects being Sunni Muslims, Shi’a Muslims, Maronites Christians, Orthodox Christians and Druze (Jawad, 2002). Although the state is by definition secular, its constitution (set out in 1926) is confessional (i.e. related to confessions of faith or sectarian religious subgroups): it ensures equal representation of each of the 18 religious subgroups into public functions, hence laying the foundations for a sectarian power-sharing political system (Geha, 2021; Nagle and Clancy, 2019). Although often presented as being the key to preserve peace and reduce tensions between confessional communities (Nagle and Clancy, 2019), the power-sharing system failed to prevent a civil war in Lebanon, which expanded between 1975 and 1990, and further created or sustained sectarian-based political parties. This led to the “sectarianization” of society after the Civil War, which was where “key belligerents – for example, state elites, proxy actors, and militia groups on the ground – manipulated and constructed ethnoreligious identities, typically through acts of extreme violence, to cleave society along communal lines in pursuit of strategic self-interest” (Nagle and Clancy, 2019, p. 2).

When the state does not care  121 This sectarianization reflected itself in all forms of state governance, including social policy and functioning. The public welfare sector is relatively weak, and relies essentially on non-governmental actors – partly funded by the government – to provide essential services and care for groups considered vulnerable, such as people with disabilities, older people and orphans (Jawad, 2002). Many of these organizations are sectarian-based, and since the government has not enforced any strict system to monitor their work, they dominate public and informal channels of service provision, giving them power and privilege over the groups they are serving. Many of their practices can be discriminatory based on political and/or sectarian partisan affiliation, and can further exacerbate social inequalities (Cammett, 2015). In addition to the confessional political system, the Lebanese state is characterized by weak structures to support legal frameworks and policy reform. This is essentially due to the centralization of power, outdated bureaucratic mechanisms, inefficiencies in administration and overall mismanagement (Haase, 2018). Its political economy is more that of a liberal laissez-faire system headed by what Jawad calls “a politically impotent bourgeoisie” (Jawad, 2002, p. 321). This political elite has been described as “resilient” (Geha, 2019, p. 66) and has been able to sustain its power through multiple forms of corruption (Adwan, 2004). Clientelism, a widespread form of corruption in Lebanon locally known as “wasta”, is manifested through the appointment of key public functions by each political leader to selected individuals within their own constituency, for political and financial personal gain (Nagle and Clancy, 2019).

DISABILITY POLICY IN LEBANON: ANALYSIS OF LEGAL FRAMEWORKS, CHALLENGES AND OBSTACLES With this macro-economic and political context in the backdrop, we take a closer look into disability policy in Lebanon. Law 220/2000 for the Rights of Persons with Disabilities in Lebanon The unique piece of legislature directly related to the rights of people with disabilities in Lebanon is Law 220, issued in 2000 (Law 220/2000, 2000). The passing of Law 220 was a significant achievement towards the advancement of disability rights in Lebanon in the post-war era, as it established the precedents for the rights of people with disabilities with regards to healthcare and rehabilitation services, education, employment, political participation, housing and transportation. It also allowed for the issuance of a national Disability Card, which is the only documentation providing entitlement to a list of disability benefits. Despite this achievement, the impact of Law 220 on improving the lives of people with disabilities remains severely lacking due to many flaws in its content and its implementation. First, it was issued before the declaration of the UNCRPD, which makes it outdated, and does not pave the way for the implementation of the CRPD, as some tenets are not aligned and might even seem contradictory to what the CRPD calls for (Baroud, 2013). Second, the law does not use the social model of disability, and instead adopts a medical perspective on disability. This is clearly shown in how the law defines disability in Article 2, as a reduced capacity (or incapacity) to perform life activities and participate in social life, mainly due to the impairment or lack of functional ability (Law 220/2000, 2000). This definition hence

122  Research handbook on disability policy fails to address the environmental, structural and attitudinal barriers that could shape the disability experience, and is not aligned with the classifications of disability in the International Classification of Functioning, Disability and Health (ICF) (World Health Organization, 2001) or the International Classification of Diseases 11th revision (ICD-11) (World Health Organization, 2021). In consequence, given that this definition was used to set the eligibility criteria for the Disability Card, the benefits provided through the card also adopt a medical and charity viewpoint and do not look at the holistic needs of people with disabilities with regards to inclusion and participation. Finally, Law 220 does not recognize the right to participate in public and political life; does not strictly promote inclusive education; fails to provide enforcement measures for employment quotas and support to make the labour market inclusive for people with disabilities; and does not present effective legal remedies for victims of discrimination (especially in the workplace). This is why the law can be described as fuelling “cruel optimism” (Berlant, 2007, p. 33) since it represented a series of incomplete promises which could not be materialized. Disability Policy Implementation and Monitoring, between Histories of Political Disablism and Clientelist Governance In addition to issues with the content of Law 220 and its relevance to the current context, there are problems with its implementation, enforcement and monitoring. Twenty years after the passing of Law 220, barely any implementing decrees have been issued, and the government failed to sustain policy reform and to ratify the UNCRPD which would safeguard these rights. There is no real recognition from the state of the contribution of people with disabilities in Lebanon, and it continues to perpetuate a medical model of service-delivery buttressed with charity discourse. As an example in relation to employment, Lakkis, a prominent self-advocate, contends: Today we see many violations happening against the rights of people with disabilities, one of which is denying them the right to access jobs. Many cases have been recorded of organizations either refusing to hire people with disabilities or granting those jobs for which they are overqualified. By the Law 220, this is illegal. Yet again this law on so many accounts is not enforced nor respected. (UNDP Lebanon, 2019 [online])

Many factors have attributed to this failure, and include: (1) the lack of political will to invest in rights-based discourses, as opposed to the usual client-based service provision feeding a political clientelism mentality; (2) the lack of public funding investment in disability policy reform; and (3) sectarian factionalism reflected in social policy (as described above), which opposes principles of universal rights and creates nepotism in access to services and care. During the Lebanon Civil War, militia and sectarian groups had set up medical and rehabilitation centres to support the injured and the newly disabled (Kabbara, 2012). These centres were the predecessors of numerous current non-governmental care institutions, which flourished through post-war funding, and have gained hegemony by being strongly politically affiliated to the political elite (Kingston, 2013). These sectarian-politically entrenched care institutions reinforce the charity discourse, perpetuating the image of people with disabilities as “passive service recipients”. They rely financially and administratively on their political counterparts, allowing political leaders to consistently use disability as a “political card” to showcase their “service to communities” and win electoral votes, while ironically doing

When the state does not care  123 nothing within their legislative or executive functions and political power at the state level to advance the rights of people with disabilities in Lebanon (Kingston, 2013). This clientelist approach was explained by one self-advocate: We are calling for collective action [to further disability rights], and they [government politicians] try to “shut you up” with individual favours.

Sectarian factionalism also infiltrated the functioning of the National Council for Disabled Persons (NCDP), which is a national committee joining together representatives from the Ministry of Social Affairs (MOSA), Organizations of People with Disabilities (OPDs) and rehabilitation institutions to advance disability affairs. Its structure, roles and responsibilities are defined by Law 220. Although bringing together at the same table these various groups with often opposing views was an accomplishment, the power influence was clearly unbalanced, with the care institutions having excessively high political leverage upon the MOSA (Kingston, 2013). And although the NCDP managed to successfully establish the Disability Card programme, OPDs felt that it was not doing enough to advance civil rights of people with disabilities. I submitted my resignation from it [the committee]. The committee considered that it was not its role to monitor whether people with disabilities were able to vote. (Quote from a self-advocate)

Sectarian and political affiliations soon became one of the criteria for election and/or appointment within the committee, which led to the dysfunction of the committee, thus reflecting the same fate as many of the current public sector institutions in the Lebanese sectarian power-sharing state. The transparency of the council was also questioned by the same self-advocate: This committee is dependent on the MOSA – so dependent on the minister. It should be an independent committee, not affiliated to MOSA. How can its role be about transparency and accountability?

Overall, the rights of people with disabilities in Lebanon have been constantly pushed aside, deprioritized and/or neglected, in a persistent disablism from the state across the past decades (Khawam, 2020). How have disability rights been advanced in the context described above? How did the disability rights movement navigate in this context?

THE DISABILITY RIGHTS MOVEMENT IN LEBANON The Birth of the Disability Rights Movement in Lebanon The Lebanon Civil War (1975–1990) coincided with the emergence of the global disability movement to reject the medical model of disability and to fight against barriers to inclusion. And while the war in Lebanon increased the need for immediate assistance to people with disabilities through care and rehabilitation institutions, it was also the birth (in the 1980s) of initial forms of self-organizing for groups of people with disabilities, inspired by this global movement. Triggered by the socio-economic exclusion of people with disabilities, OPDs started to dissociate from the traditional charities or service-oriented institutions and militia

124  Research handbook on disability policy groups, and to mobilize towards rights-based activism. They also had an active prominent role in leading anti-war and anti-violence protests during the Civil War, which were defining moments in making people with disabilities visible and heard in Lebanon (Kabbara, 2012). In the post-war era, community-based initiatives were launched by parents’ groups and self-advocacy groups to push against exclusionary residential care and institutionalization provided by the prevailing care institutions, towards inclusive schools and community-based day care centres (Kingston, 2013). The nascent movement was also determined to position itself within the national policy arena and invested in persistent and often disruptive protests to demand that the rights of people with disabilities are respected in Lebanon’s reconstruction and reforms. “We moved from being a marginalized group that has to be ‘looked after’ to a political force to be reckoned with” (Kabbara, interviewed by Kingston, 2013, p. 199). OPDs were also key players in the drafting and adoption of Law 220/2000, which was one of the first real victories of the disability movement in Lebanon (Kingston, 2013). A Constant Battle Against Institutionalization and Sectarianism The core of advocacy work from activists and OPDs is to shift the disability discourse from service provision and rehabilitation towards rights-based action, from segregation and institutionalization towards inclusion and community-based care and independent living. This opposes the mission of many service-based care institutions in Lebanon, which are financially supported by the Ministry of Social Affairs to continue providing institutionalized care, with no real accountability, quality standards and supervision of their work (Kingston, 2013). Some of the care institutions are also accused of perpetuating the charity model to gather more funds. We have seen this. Some institutions “destroy the personality” of the beneficiaries just by having them live in segregated places, and a lot of time because their staff lack competence due to limited resources. (self-advocate)

In addition to opposing the sectarian-based rehabilitation institutions which foster political clientelism, the disability movement has also increasingly shaped its non-sectarian political identity. After the Civil War and the reinstalment of what was said to be democratic elections, some OPDs strongly advocated for the right to vote and created watchdog committees during the Lebanese parliamentary and municipal elections to monitor the accessibility of voting polls (data from interviews with three self-advocates). The shift in identity politics was evident through the discourse during and after the popular Uprising of October 2019, the momentum of the revolution allowing the OPDs to take a secular political stance and join in the slogans “Killoun yaa’ni killoun” (“All of them” in Arabic), signifying their opposition to the entire ruling class and their sectarian politics (Ayoub, 2019). The Disability Rights Movement across Multi-Layered Crises The consecutive crises in Lebanon continuously shifted national priorities and pushed disability rights further behind in the country’s political agenda. One self-advocate said: We were always being told “now is not your time”.

When the state does not care  125 But every new crisis was also seen as an opportunity by the OPDs to put pressure on governmental leaders and to advocate for the inclusion of people with disabilities in crisis response strategies, such as by: advocating for accessible and inclusive reconstruction of damaged public buildings and schools after the July 2006 war and after the Beirut Explosion (Wehbi, 2012; Ghsain, 2021); active participation in the Revolution of October 2019 demanding rights for all (Ayoub, 2019; Khawam, 2022); opposing austerity and ensuring social protection throughout the current financial crisis (Lebanese Organizations of People with Disabilities, 2020); prioritizing the vaccination of people with disabilities in the COVID-19 pandemic (Disability Hub, 2021); and advocating for the rights and rehabilitation of the victims injured and/or newly disabled by the Beirut August 4 blast (Ghsain, 2021). Complex Internal Dynamics, Leadership and Representation It is crucial to state here that, despite all the progress made, there was never “one” unified disability movement in Lebanon. In reality, the disability movement, as presented in this chapter, is the result of actions from several groups and clusters of advocacy work, with often diverging paths and strategies. Despite continuous initiatives to join efforts and raise united demands, the movement has typically witnessed power struggles and in-house quarrelling over leadership and funding across the years, which has been generally detrimental to the advancement of disability rights. “We are not yet a coalition. Maybe we need a new generation in modern thinking”, suggests one activist, highlighting the necessary shift in mentality towards better cooperation. There is also an observed hierarchy within the disability movement, where issues of people with physical disabilities seem to be at the centre of disability activism, while the cause of people with other types of disability such as intellectual disabilities, is relatively marginalized or even absent from the policy discourse (Khawam, 2020). A self-advocate reflects: People who are deaf and people who have an intellectual disability – I felt that they were the most marginalized [within the movement], maybe because they are the less “vocal”, there are communication barriers, and in many cases the parents speak on their behalf.

More generally, though, as argued in the next section and despite complex internal and external dynamics, the vibrant disability movement in Lebanon has continued to push for human rights and dignity for people with disabilities, across the various multi-faceted crises the country has been going through, in a form of hopeful resistance (Khawam, 2020).

DISABILITY RIGHTS ACTIVATION IN A DISABLIST STATE: BARGAINING WITH THE STATE OR BY-PASSING IT? Lebanon can be compared to what Deets calls a “passive-aggressive state”, where overall inefficiency in the power-sharing structure leads to resistance to policy reform, as power-holders use vetoes to maintain the status quo and to preserve their power (Deets, 2006). Political governance through non-state institutions is a strategy used by those in power in this context (Deets, 2006), as can be seen by the heavy sectarianism and politicization of disability-focused non-governmental organizations and institutions in Lebanon which perpetuate the sectarian divide (Kingston, 2013). However, this has also pushed for alternative forms of functioning and mobilization, away from the sectarian status quo promoted by the political elite (Nagle,

126  Research handbook on disability policy 2018). Non-sectarian social movements in Lebanon have detached themselves from sectarian identities either through hegemonic compliance, constructive engagement or active resistance to the system (Nagle, 2018). This is also applicable to the disability movement: while very few actors of the movement have complied with the current state-of-affairs, the movement has essentially responded either by (1) engaging with the state – what we present here as a form of bargaining, mediated by international actors; or by (2) actively resisting the disablist governance of the state and developing alternative modes of mobilization which by-pass the state altogether. The following section will describe these two mechanisms of action. By-passing the State: Community Governance, Networks and Cross-Movement Solidarity In response to the inefficient and passively disablist state (Khawam, 2020), the disability rights movement actors have recourse to what Deets identifies as “communal governance”’ (Deets, 2015), illustrating how “significant functional communal autonomy can be achieved in the absence of coherent institutions designed to support it” in the Lebanese public policy context (Deets, 2015, p. 330). Examples of communal governance can be seen through OPDs in Lebanon investing in community-based development projects that would aim to “mimic” or model the principles and rights called for in these policies. “Even after the law 220 was passed, we realized there were still a long way for it to be applied. This is where we shifted our strategy towards creating models or prototypes for inclusion. We chose as a priority working on employment, education, political rights and the promotion of an accessible and inclusive environment”, says the leader of one of the prominent OPDs. The aims of these projects or models were not only to influence public opinion by increasing awareness on the rights of people with disabilities and reducing stigma, but also to build enough empirical evidence to increase pressure upon the state and policymakers towards the implementation of Law 220 and, later on, the ratification of the UNCRPD. This also meant introducing or contextualizing new models of inclusive development, such as the promotion of community-based rehabilitation in several areas in Lebanon in the 1990s, and the creation of inclusive education prototypes in some schools in Lebanon. It can be said that the movement’s actions have, in many instances, replaced the state; and compensated for the state’s inaction by building community grassroot models of inclusion. The movement was the driver for change, instead of change being state-led. Although these projects did not have “legal authority” and were not reflective of the official policy discourse which favoured institutionalization, they were developed with the aim to influence or ignite policy reform (Deets, 2015, p. 334). Another element of communal autonomy is reflected through networks, which are individuals, groups or entities tied together in a form of relational identity (Deets, 2015). Networks act as “organic and informal social systems” (Jones et al., 1997, p. 313) and highlight shifts in policy governance discourses involving various actors (Deets, 2015). In the context of Lebanon, the interactions between OPDs, civil society organizations, schools and private sector institutions towards the inclusion of people with disabilities, can be understood as representations of communal network governance. “We worked on protocols and signed agreements [with the private sector] – this helped increased employment for people with disabilities”, suggested a prominent self-advocate, illustrating how these networks helped promote inclusive employment as an example. Cross-movement solidarity (i.e. joining efforts with other civil society and human rights movements) is another community-based strategy used

When the state does not care  127 by the disability movement, which was reinforced through grassroot partnerships built during the October 2019 Uprising and successive street protests. We now explore the engagement of disability rights actors with international actors in the next section. Bargaining with the State: International Organizations as Mediators of Policy Reform Given the significant gaps left by the Lebanese state in responding to basic needs, international aid agencies and NGOs have historically been key players in Lebanon’s humanitarian and development plans, filling gaps left by the government across various sectors, from education to health to agriculture and industry. While international aid actors largely overlooked disability issues until 2016–2017 (Combaz, 2018), two recent examples showcase the increased recent involvement of international agencies, such as United Nations organizations, in promoting the rights of people with disabilities in Lebanon. These include: (1) joint action between the International Labour Organization (ILO), UNICEF and OPDs towards the development of a comprehensive national rights-based social protection system; and (2) a proposal with UNICEF and ILO towards the design of a National Disability Allowance (ILO and UNICEF, 2021). These initiatives invite a “constructive dialogue with the government” (Lebanese Organizations of Persons with Disabilities, 2020, p. 1), and hence highlight the role played by UN agencies in initiating, mediating or catalysing policy dialogues, and supporting the government technically and financially in policy reform. However, disability activists have different views and opinions about this role. On one hand, some disability activists perceived the UN agencies’ leverage on the government as positive and strategic: They have influence to talk to the government. The government might listen to them, instead of listening to the OPDs,

said one self-advocate. Another self-advocate added: I am happy with the work of the ILO and UNICEF and what they are doing. Things might take time to change, but I do believe that we are moving towards change. […] It is ok if things at least only get fixed on paper. Even if the policy is not implemented. At least this would be a first step forward.

On the other hand, other disability activists seemed more cautious of this role: The UN agencies won’t make the government angry; they are diplomatic with the government. The UN agencies will not contradict the government. They can be supportive of OPDs, but you can’t depend on them. They can influence the government – but it is not the same “dose” as OPDs. They bring technical support to governments but is the government ready to implement?

said a self-advocate. Another self-advocate contended: I see them [international organizations] as double-faced. They support us, but they also work with the government. They are our allies, but in the end they are diplomatic with the government.

Activists also highlighted some power imbalances where UN agencies might overuse their power:

128  Research handbook on disability policy […] in the end, they [UN agencies] will do what they decide, it is like as if we [OPDs] are working for them.

International NGOs (INGOs) are other actors that may come into play with a bargaining role, as they coordinate directly with local state actors such as primary healthcare and social development centres. They are perceived by the activists as having a positive role in service provision; however, they are led by their own agendas and funding streams: INGOs are less bound by the government [than UN agencies], but they are also tied by their funding. And once a project ends, they leave you all alone,

contended one self-advocate and head of an OPD. “The INGOs are good, but this also varies with their individual agendas” said another self-advocate. However, one criticism was presented of the INGOs: activists felt that they do not do enough towards promoting inclusion, since they still support, fund or collaborate with rehabilitation and care institutions.

TOWARDS DISABILITY POLICY REFORM IN LEBANON: FRAMING DISABILITY IN THE HUMAN RIGHTS DISCOURSE What change is to be sought out? Which reform is needed now? Is there a need for a new law, or rather a need to update the current Law 220? Activists have various views on this question: [Law 220] is an obsolete law now. It is not consistent with the UNCRPD nor the SDGs. It is very old now, we either need a new law, or to re-write Law 220 and change it in a radical way. We need a new disability assessment in Lebanon, regarding classification, etc. and relating the right to the need in terms of allowances and entitlements,

said one self-advocate. “Law 220 now is of no use, even if it includes a quota, the country has changed a lot” said another self-advocate. Some activists also contend that the ratification of the UNCRPD would not be enough. The answer to these questions requires situating the disability rights movement in Lebanon within the global human rights discourse, using the policy-as-discourse theory. Problematizing Disability Rights in the Human Rights Discourse in Lebanon The UNCRPD is a concrete proposal for the affirmation of the universal human rights of persons with disabilities, and was fought for by global disability movements, given that the earlier human rights laws, namely the Universal Declaration of Human Rights (1948) and the International Covenants on Civil and Political Rights; and Social, Economic and Cultural Rights (1966), had failed to deliver against the discriminations of people with disabilities and the affirmations of their dignities in societies (Kanter, 2014). We find that the Lebanese disability movement also has had to navigate through similar tensions between the universality of human rights and the particularity of the disability rights in their interactions with fellow human beings and civil society groups. Examples are shown through the movement’s participation in the Lebanese revolution of 2019 and anti-war campaigns (between 1995 and 2000) which were about affirming human rights and the rule of law for all Lebanese people.

When the state does not care  129 Disability activists position themselves as both human rights and disability activists in such wider societal interactions: I am a disability and human rights activist. This is how I present myself to people who do not know me,

says a leading self-advocate. In relation to the 2019 Uprising, a self-advocate contends: I was part of the revolution movement. I did not feel that we needed a separate “revolution” for those with disabilities. I felt […] we should be part of the bigger movement of the revolution.

Yet the disability activist also feels that more should have been done during the 2019 Uprising by other civil society organizations in recognizing disability rights while demanding universal human rights for all with better cross-movement solidarity. The politics of the Lebanese disability movement also provide a good critique of some of the assumptions underlying human rights and the UNCRPD that we have identified in our introductory section, namely that rights are state-protected and are independent of cultures. These underlying assumptions are modelled on the notion of abstract individual rights, separated from the social context lived by people with disabilities and mediated through the intersubjective relations within a society (Akerkar and Devavaram, 2015; Akerkar et al., 2016). The earlier discussion on engagements with communities by the OPDs in Lebanon is based on an understanding that it is important to engage with the intersubjective social worlds of people with disabilities in order to further their individual rights. Community initiatives by OPDs have included home and community actions, awareness raising within families and local communities to confront the barriers to the participation of people with disabilities and to realize their abstract individual rights. By-passing the state, OPDs have adopted the incremental strategy of promoting disability rights at local levels (Kingston, 2013). Similarly, the recognition from the disability movement in Lebanon that it cannot depend on the state to further the rights of people with disabilities defines the movement’s politics and approaches to the UNCRPD. While acknowledging the importance of the UNCRPD in furthering the human rights of people with disabilities, disability activists also highlight that its mere ratification will not lead to substantive changes in the policies and practices needed to make the Lebanese society more inclusive. This partly comes from their experience in relation to the implementation of Law 220 which has remained mainly on paper, and partly from their evaluation of the “rule of law” and the “political class” in Lebanon. A disability activist contends: We need to ratify the UNCRPD. But even if we do ratify the UNCRPD, as long as we are in a country which does not respect human rights and does not have accountability, nothing will change. And this is what we need to work on now, to have a strong state with the rule of law.

For yet another disability activist: UNCRPD will not be enough. It is because our political class do not care.

These narratives highlight the awareness among disability movement actors that the affirmation of disability rights via affirmation of their human rights through the UNCRPD is contin-

130  Research handbook on disability policy gent upon their recognition as full citizens via a social contract by a neutral (non-sectarian and non-clientelist) state that does not exist in Lebanon. Given these reflections, how should the relation between the UNCRPD, human rights and disability rights movement be conceptualized in Lebanon? We propose here the use of Rancière’s conception of human rights to formulate this relation. Rancière (2004, p. 302) contends “the Rights of Man are the rights of those who have not the rights that they have and have the rights that they have not”. That is, to the extent that the excluded act as though they have human rights (by mobilizing them), they can be said to have those rights that they still do not have. Hence, the value of mobilizing the UNCRPD and its human rights claims by the Lebanese disability movement, a disenfranchised group, lies in questioning the existing social hierarchy and making normative and substantive claims to the equality of people with disabilities with their fellow country residents, as if they have those equality rights (Akerkar, 2020). More generally, the Lebanese context shows that the disability movement bridges the space between universal human rights and particular disability rights; individualist human rights and the intersubjective lived lives of people with disability through their political actions of affirming the equality claims of people with disabilities in all social realms.

CONCLUSION: A NEW MODEL OF ACTION In conclusion, Lebanon presents a rich and complex case of government failure to reinforce disability rights policies and to enact human rights for all citizens. Where most states are assumed to be patrons of human rights and protectors of citizen rights, Lebanon has witnessed alternative forms of community-based actions and activism to compensate for (and sometimes resist) governmental malfunction. The disability movement has either bargained with the state by engaging third-party external mediators, or by-passed the state and created alternative networks for disability rights activation. Several lessons on disability policy and human rights can be drawn from the Lebanon context. First, disability policies and international conventions such as the UNCRPD present significant limitations in contexts where the rule of law is lacking, and systems for protection, implementation and monitoring of social policies are weak, fragmented and/or dysfunctional. Disability policy reform (through amendments to national laws and policies and ratification of the UNCRPD) is a necessary step but not the main venue through which the lives and well-being of people with disabilities are improved or protected. “We cannot wait for the state” is a common reflection among all disability rights actors in Lebanon, acknowledging the imminent and sustained need to take matters “in their own hands”, and build parallel community-based mechanisms to ameliorate the living situation of people with disabilities. Second, solidarity is key in shaping the disability discourse and is a true (re)affirmation of universal human rights in such contexts. Various forms of communal solidarity have been historically observed in Lebanon and strengthened after the revolution of October 2019 and the Beirut Explosion, in what Geha presents as community-driven resistance (Geha, 2021). “Constructive resistance occurs when people begin to build the society and polity that they desire independently from the structures that govern their lives” (Sørensen, 2016 as cited in Geha, 2021, p. 13). Solidarity involves co-joint actions in communities, but disability activists also talked about solidarity across civil rights movements. Cross-movement solidarity solidifies the disability rights discourse in human rights advocacy, positioning the rights of people

When the state does not care  131 with disabilities on an equal basis with others, and was identified by one self-advocate as “the only way forward now”. Third, the role that can be played by third-party actors, such as the international community, UN agencies and international organizations, is highly significant, given the power and level of influence these actors present. Their role needs to be further explored and strengthened beyond diplomatic programming and more towards strategically shaping the national disability rights discourse. Finally, and most importantly, where disablism is state-induced and politically driven, disability rights activation cannot but be a political endeavour. According to Shakespeare and Watson (2001), disability politics is first and foremost about establishing disability as a political issue, a matter of political power and oppression, revolving around the identity of a minority group, disabled by society (Shakespeare and Watson, 2001). The disability movement in Lebanon has historically shaped its political identity and gradually re-enforced its anti-sectarian stance. Strengthening this identity using a rights-based approach and fostering proactive citizenship (Helou, 2021) are important steps towards political change and policy reform (Memari and Hafizi, 2015). The narratives in this chapter have illustrated a new model for action towards policy change, relevant not just in non-signatory states and/or unstable contexts, but also in countries where the UNCRPD implementation continues to be lacking or where accountability measures are insufficient (Aldersey and Turnbull, 2011). The model calls for building evidence for policy development and advocacy through an incremental bottom-up approach, from grassroot interventions to international actors in the disability rights arena. The political mainstreaming of disability rights in human rights battles is imperative to shaping the policy discourse and to pave the way for structures and systems to protect the rights of all citizens alike. This is not only a call for political and human rights activists, but also for activist scholars and academic and community researchers to join efforts and further expand knowledge and evidence-for-policy research on the role of non-state actors and alternative modes of action in disability rights enactment and practices.

NOTES 1.

2. 3. 4. 5.

Start of endnote. At the time of writing, Lebanon had not yet ratified the United Nations Convention on the Rights of People with Disabilities (UNCRPD). However, the Lebanese Council of Ministers issued a decision on 6 February 2023 to initiate a decree for the ratification of the UNCRPD, which may lead to an eventual ratification of the Convention. This however appears to be a slow process given the country’s weak governance, political tensions, and record of poor policy implementation, which were all issues raised by the disability activists interviewed in this research. End of endnote. Start of endnote. While the authors acknowledge that the terms “disablism” and “ableism” can sometimes be used interchangeably, they are highlighting the discriminatory and oppressive nature of the absence of adequate enforced policies, hence the use of the term “disablism”. End of endnote. Start of endnote. All four self-advocates identified as being disability activists (confirmed through the interviews). Two had a physical disability, one had a visual disability and one had an intellectual disability. End of endnote. Start of endnote. G.K. is a doctoral researcher and S.A. is a member of the supervisory team. End of endnote. Start of endnote. G.K. holds leadership positions within two disability advocacy networks: Steering Committee Member of the Disability Hub, located at the Centre for Lebanese Studies since

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6.

September 2019, and Board Member of the Lebanese Down Syndrome Association since August 2018. End of endnote. Start of endnote. S.A. is the founder member of the Disability Hub, located at the Centre for Lebanese Studies, Beirut, and is involved with the Hub’s campaigns on disability rights in Lebanon. End of endnote.

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When the state does not care  133 Ghsain, N. (2021). Bodies not their own: The neglected victims of Beirut’s port explosion. The Legal Agenda. Retrieved from https://english.legal-agenda.com/bodies-not-their-own-the-neglected-victims ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -of-beiruts-port-explosion/ ​ ​ ​ ​ Haase, T. W. (2018). A challenging state of affairs: Public administration in the Republic of Lebanon. International Journal of Public Administration, 41, 792–806. Hammoud, Z. (2021). The victims of August 4 demand the lifting of immunities and the rights of 800 disabled persons. The Legal Agenda. Retrieved from https://legal-agenda.com/%d8%b6%d8%ad%d8 ​ ​ ​ ​ ​ ​ ​ ​ ​ %a7%d9%8a%d8%a7-4-%d8%a2%d8%a8-%d9%8a%d8%b7%d8%a7%d9%84%d8%a8%d9%88 ​ ​ ​ ​ ​ ​​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %d9%86-%d8%a8%d8%b1%d9%81%d8%b9-%d8%a7%d9%84%d8%ad%d8%b5%d8%a7%d9 ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %86%d8%a7%d8%aa-%d9%88%d8%a8%d8%ad%d9%82%d9%88%d9%82/ ​ ​ ​ ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​. Helou, J. P. (2021). Moving confidently into the future: Persons with disabilities as proactive citizens. In The Issue of Disability in the Arab World: A Roadmap for the Future. In press. ILO & FAFO (2020). Facing Multiple Crises: Rapid Assessment of the Impact of COVID-19 on Vulnerable Workers and Small-scale Enterprises in Lebanon. Retrieved from https://www.ilo.org/ ​ ​ ​ ​ wcmsp5/groups/public/---arabstates/---ro-beirut/documents/publication/wcms_747070.pdf ​ ​ ​​​ ​​​ ​ ​ ​ ​ ​ ​ ILO & UNICEF (2021). Delivering on the Urgent Need for a National Social Assistance System: Putting in Place Social Grants. Retrieved from https://www.unicef.org/lebanon/media/6361/file/BRIEF ​ ​ ​ ​ ​ ​ ​ ​ ​ _Building_the_social_assistance_system.pdf.pdf ​ ​ ​ ​ ​ ​ Jawad, R. (2002). A profile of social welfare in Lebanon: Assessing the implications for social development policy. Global Social Policy, 2(3), 319‒342. Jones, C., Hesterly, W. S. & Borgatti, S. P. (1997). A general theory of network governance: Exchange conditions and social mechanisms. The Academy of Management Review, 22(4), 911‒945. Kabbara, N. (2012). Non-violent resistance and reform in Lebanon. In E. Picard & A. Ramsbotham (Eds), Accord Issue 24: Positive Peace for Lebanon: Reconciliation, Reform and Resilience (pp. 32‒34). Conciliation Resources. Kanter, A. S. (2014). The Development of Disability Rights under International Law: From Charity to Human Rights. Routledge. Khawam, G. (2020). “What about us?”: The unheard voices of the Lebanese Revolution. Kohl: a Journal for Body and Gender Research, 6(2), 221–229. Khawam, G. (2022). “A Nation for All”: The Lebanon Uprising and disability rights in Lebanon. In J. Karam & R. Majed (Eds), The Lebanon Uprising of 2019: Voices from the Revolution. London: Bloomsbury Publishing. Kingston, P. W. (2013). Reproducing Sectarianism: Advocacy Networks and the Politics of Civil Society in Postwar Lebanon. Suny Press. Lang, R., Kett, M., Groce, N. & Trani, J.-F. (2011). Implementing the United Nations Convention on the Rights of Persons with Disabilities: Principles, implications, practice and limitations. Alter, 5, 206–220. Lebanese Organizations of Persons with Disabilities (2020). Towards a Rights-Based and Comprehensive Social Protection System for Lebanon: Supporting the Inclusion and Empowerment of Persons with Disabilities. Initial position paper. Beirut, May 2020. Meekosha, H. (2011). Decolonising disability: Thinking and acting globally. Disability & Society, 26, 667–682. Meekosha, H. & Soldatic, K. (2011). Human rights and the global south: The case of disability. Third World Quarterly, 32, 1383–1398. Memari, A. H. & Hafizi, S. (2015). People with intellectual disability and social-political life participation: A commitment to inclusive policies in less developed countries. Journal of Policy and Practice in Intellectual Disabilities, 12, 37–41. Nagle, J. (2018). Beyond ethnic entrenchment and amelioration: An analysis of non-sectarian social movements and Lebanon’s consociationalism. Ethnic and Racial Studies, 41, 1370–1389. Nagle, J. & Clancy, M.-A. (2019). Power-sharing after civil war: Thirty years since Lebanon’s Taif Agreement. Nationalism and Ethnic Politics, 25, 1–8. Rancière, J. (2004). Who is the subject of the rights of man? South Atlantic Quarterly, 103, 297–310. Shakespeare, T. & Watson, N. (2001). Making the difference: Disability, politics, and recognition. In G. L. Albrecht, K. Seelman & M. Bury (Eds), Handbook of Disability Studies (pp. 546‒564). Sage Publications.

134  Research handbook on disability policy Shaw, S. E. (2010). Reaching the parts that other theories and methods can’t reach: How and why a policy-as-discourse approach can inform health-related policy. Health, 14(2), 196–212 Smith, G. W. (1990). Political activist as ethnographer. Social Problems, 37, 629–648. The World Bank. (2021). Lebanon Sinking into One of the Most Severe Global Crises Episodes, amidst Deliberate Inaction. The World Bank Press Releases. Retrieved from https://www.worldbank.org/en/ news/press-release/2021/05/01/lebanon-sinking-into-one-of-the-most-severe-global-crises-episodes ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ UNDP Lebanon. (2019). On the International Day of Persons with Disabilities: Four Measures For Lebanon to Become a More Inclusive Country. UNDP Lebanon Stories [Online]. Retrieved from https://www.lb.undp.org/content/lebanon/en/home/stories/Progress-Dev-Nation/Progress-Dev ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -Nation/Progress-Dev-Nation.html ​ ​ ​ ​ UNHCR (2020). Regional Refugee and Resilience Plan: Regional Strategic Overview 2021–2022. Retrieved from https://reporting.unhcr.org/sites/default/files/SYRIA%203RP%20REGIONAL ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %20STRATEGIC%20OVERVIEW%202021-2022.pdf ​ ​ ​ ​ United Nations Department of Economic and Social Affairs (2019). Disability and Development Report: Realizing the Sustainable Development Goals by, for and with Persons with Disabilities. New York: United Nations. Wehbi, S. (2012). Advancing a disability rights agenda in a context of war: Challenges and opportunities. International Social Work, 55, 522–537. World Health Organization (2021). International Classification of Diseases 11th Revision (ICD-11), May 2021 edition. Geneva: World Health Organization. World Health Organization (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.

11. Decentralization, empowerment and grassroots engagement: advocacy organizations navigating the implementation of codified disability rights in Malawi Sarah I. Huque

INTRODUCTION Recent United Nations (UN) materials highlight the continued exclusion of people with disabilities1 from society and enjoyment of human rights (United Nations, 2018). Studies which attempt to monitor the implementation of disability rights consistently find a continued and ubiquitous disparity in the realization of disability human rights in societies globally, both in multi- and single-nation studies (see for example, Chibaya, Govender and Naidoo, 2021; Mitra and Yap, 2021). This is the case in Malawi, where there has been an evolution of disability rights legislation over time, with less work done on implementation. As Malawi has participated in international systems, such as the UN, national leaders have passed human rights legislation to demonstrate Malawi’s progress to the international community. This included Malawi’s 2009 ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), as well as prior ratification of ILO and UN conventions, and the development of a National Policy on the Equalization of Opportunities for Persons with Disabilities in 2006.2 In 2012, Malawi passed its Disability Act, which contains provisions for responding to violence, accessibility requirements, and disability support and services. This legislation enshrined the rights of people with disabilities into Malawian law, as had long been advocated for by a broad coalition of disability advocates across Malawi. This coalition included the Federation of Disability Organizations in Malawi (FEDOMA). FEDOMA is an umbrella organization for Disabled Persons Organizations (DPOs), consisting of a central headquarters with paid staff and leadership, plus a volunteer grassroots base drawn from its constituent DPOs’ members. Haang’andu (2020) notes that the increase in African nations’ codification of human rights (with little action on implementation) may be a form of posturing toward dominant global powers. As a result, legislation exists but is not wholly enacted ‘on-the-ground’. This view sees international forums as the primary circuit of meaning for legislation such as Malawi’s Disability Act and the UNCRPD. However, these legal resources do also exist within Malawi’s national system and can be used by activists with a vested interest in working toward implementation. The continued development, production and circulation of legal resources into schematic norms by advocates is part of a relational process through which advocacy effects change. Considering the ways in which one majority-world disability umbrella organization, FEDOMA, engages in these processes can provide insight and inspiration for approaches to rights implementation worldwide, and especially in low-resource settings such as Malawi. 135

136  Research handbook on disability policy Methods In this chapter, I draw on findings from a broader research project with FEDOMA’s District Disability Forums (DDFs), exploring advocates’ work toward activation and implementation of disability (human) rights. The fieldwork referenced in this chapter was carried out from November 2018 to January 2019, after a familiarization/project design period (September– November 2017). Participant observation was undertaken throughout fieldwork; 22 DDF members were interviewed (20 people with disabilities and two parents of children with disabilities) from four districts (D1, D2, D3, D4), as were eight FEDOMA staff (Headquarters). 16 interviewees were women, 14 men. Interviewees were asked whether they preferred a pseudonym or their real name be used in outputs; in this chapter, names with an asterisk (*) after them are pseudonyms. I use Giddens’ (1984) structuration theory as the foundation for the analysis in the chapter, as it is implicitly concerned with relationships and processes, both of which are key to rights implementation work. Giddens (1984) holds that systems are made of structures (consisting of ‘rules’ and ‘resources’) and agents that mutually constitute one another over time and across spaces. Structuration theory can be used to emphasize the importance of contextual – space, place and time – impacts on these interactions between structures and agents. Drawing on Sewell Jr.’s (1992) critique of Giddens (1984), I utilize the broader term ‘schema’ in place of ‘rules’ to encompass a more fluid notion of the social, cultural and legal constraints and enablements within which advocates work. This chapter contributes a consideration of the ways in which the implementation and activation of codified disability rights is an ongoing process which advocates must navigate based on the particulars of their context. In the next sections, I introduce FEDOMA and briefly provide some background on human rights and disability in Malawi. After this, drawing on in-depth interviews and participant observation, I use a geographical lens to consider the ways in which disability advocates (i) develop cross-scalar, ‘reference’ resources in their drive for rights implementation, (ii) prioritize rights, and (iii) access, engage and perform voice within different spaces, communicating with a range of audiences through word, action and presence. In the final section, I discuss the implications of this chapter for disability organizing in Malawi and beyond.

INTRODUCTION TO FEDOMA FEDOMA was founded in 1999 (Chauluka and Chiumya, n.d.) by disability rights activists to unite DPOs and form a stronger disability rights movement. It is primarily funded by international donors and partnerships. Many of FEDOMA’s paid staff are people with disabilities, and only people with disabilities may hold the three main managerial positions (Executive Director, Head of Finance, Head of Programmes). The organization foregrounds intersectionality and local relevance in their practices, particularly emphasizing women’s and youth’s issues (FEDOMA, 2019). After the passage of the Disability Act, FEDOMA’s focus shifted away from advocating for the passage of legislation toward ensuring implementation of the Act’s provisions. This partial pivot reflects Malawi’s decentralized approach to the implementation of national legislation, as codified in the 1998 Local Government Act. National legislation is often implemented at district level; Malawi’s 28 districts are its main administrative units, distributed across three regions (Northern, Central, Southern). As part of their focus on

Decentralization, empowerment and grassroots engagement  137 rights implementation, FEDOMA developed the Disability District Forums (DDFs), locally based groups consisting of volunteers drawn from constituent DPOs, to monitor and advocate for rights implementation at the local (district) level.

CONTEXT: HUMAN RIGHTS AND DISABILITY IN MALAWI In Malawi, the ratification of international legislation proclaimed the country’s commitment to equal employment opportunity, reasonable accommodation and disability human rights. Nationally, the Handicapped Persons Act 1971 formed the Malawi Council for the Handicapped, a quasi-governmental organization that is tasked with implementation of (the limited available) government programming for people with disabilities, e.g., vocational training. The 2012 Disability Act formalized Malawi’s commitment to the human rights of people with disabilities (as set out in the UNCRPD) and included specific provisions designed to promote the economic and social inclusion of people with disabilities. Despite this increasingly reformist legislative context, many people with disabilities (in Malawi and globally) face a high level of social stigmatization, exclusion and ostracization, in direct violation of their human rights. Booyens, van Pletzen and Lorenzo (2015, p. 7) argue ‘the gap is... wide between the goals for the social inclusion of persons with disabilities... and the contextual realities of community disability practice in rural areas of developing countries.’ Part of addressing this gap means addressing place-based cultural beliefs about the meaning of disability. Disability is often seen as relating to witchcraft and/or superstition in Malawi. Health workers in Paget et al.’s (2016) study highlighted a lack of biomedical knowledge among parents and carers about long-term impairments caused by malaria and meningitis, turning instead to alternative explanations such as witchcraft. Beliefs around witchcraft and superstition are especially dangerous with regard to albinism (Rohwerder, 2018). Some Malawians believe that persons with albinism are not human and/or are ‘magic’. Their bodies are used in rituals intended to help individuals gain money, status or fame (Setume, 2016), leading to a high level of violence against people with albinism. The supposedly ‘magical’ nature of disability means that people with disabilities can be exploited in other ways. Some believe that having sexual intercourse with a person with a disability can cure HIV/AIDs, leading to sexual assaults (Setume, 2016). Banks et al. (2017) note that perpetrators of violence against people with disabilities may receive lighter punishments from authorities, especially in cases of domestic or household violence, due to cultural stigmatization. The human rights of Malawians with disabilities are violated or unenforced in other sectors as well. Malawian society is often physically inaccessible for people with disabilities, despite the Disability Act’s accessibility provisions for new buildings. The majority of previously existing public infrastructure has also not been redeveloped. Even if spaces have adaptations for some types of disabilities, many people with disabilities lack mobility devices or other aids to help them navigate and engage in public places (Eide and Ingstad, 2013). While inclusive education has long been on both advocates’ and politicians’ platforms, access to schooling remains a challenge. A 2004 nationally representative survey found that 53.5% of Malawians with disabilities had never attended school, compared to 25.7% of non-disabled Malawians (Eide et al., 2011).

138  Research handbook on disability policy Provision of services for people with disabilities is lacking, though this is exacerbated by the dearth of public services in Malawi in general. Booyens et al. (2015) conducted a review of studies on disability in Southern African countries, including Malawi, which found: Individuals and households with a member with a disability experienced substantial gaps in access to services, social and economic status, access to information and to assistive devices and social participation (Eide and Ingstad 2013). This translates into a denial of equal opportunities for persons with disabilities to participate and contribute in their community and society, which is a violation of their human rights. (p. 2)

Eide and Ingstad (2013) highlight the geographical divide in the experience of disability for Malawians; those who live in rural areas have less access to the limited services, support, specialized education and health care available. This geographical divide exacerbates existing challenges of life within the structural constraints of Malawi, including widespread poverty, limited transportation and corruption among leaders and service providers (Banks et al., 2017).

VOICE AS A RESOURCE FOR DISABILITY ORGANIZING Voice is a key resource in FEDOMA’s approach to advocacy, given the general resource constraints of the Malawian setting. The majority of its grassroots volunteers work with limited financial resources, making interactions in everyday social spaces important opportunities for activism. Voice is a relational, evolving resource. Scholars such as Swerts (2015) highlight the importance of considering the context, audience and motivation behind expressions of voice by activists. Voice includes activists’ roles in disseminating facts and policy (Krumer-Nevo, 2009), i.e., the existence of codified disability rights. Performances of voice can be individualized or collective depending on context, drawing on personal experiences and group repertoires. Voice may initially be seen as privileging the vocal, which is not an avenue of expression available to all people. However, the term is used within the literature and by the disability rights activists I engaged with and has complicated, highly context-specific meanings. We can expand our thinking by incorporating the physical occupation of space and other forms of expression into our conceptualization of voice. As Ladson-Billings (1998, p. 13) stated, voice is ‘naming your reality’. Individuals express this concept – their evolving lived reality – in a multitude of embodied ways.

DEVELOPING RESOURCES FOR USE ‘EX-SITU’ AND ACROSS SCALES During fieldwork, it became clear that the movement of knowledge and voice-resources across the scales of FEDOMA was crucial to the work of advocates seeking rights implementation.3 Often, the scales at which FEDOMA and its DDFs undertook their advocacy work corresponded with their physical position within the organization; these scales also necessarily interact and shift. FEDOMA headquarters’ staff and managers, working at the ‘centre’ within spaces of economic and legislative power, handled much of the work done at the national and international scales; DDF members were included in this work, though it was coordinated through FEDOMA. The DDFs generally focused on the district scale, working within a variety

Decentralization, empowerment and grassroots engagement  139 of spaces in a given district. However, they used resources that were developed through the headquarters’ national-level advocacy work, including the passage of legislation and national awareness-raising campaigns. The UNCRPD was considered the ‘gold standard’ of disability legislation by FEDOMA staff and volunteers; as a resource it provided (international) legitimacy and guidance on standardized rights to which people with disabilities are entitled. Despite the problems raised by academics (including Haang’andu, 2020) about applying a Western-centric disability paradigm to African countries, FEDOMA advocates found this internationally legitimate grounding useful: We trained [the DDFs] about the legal provisions... in Malawi. The first one, the UNCRPD. And then we also give them capacity on… the Malawi Disability Act 2012… They should be able to understand them. And when monitoring, they should... know what they are monitoring about. We also… involve them, teaching them, giving them skills on advocacy… They can demand their rights. From the? Stakeholders… We make sure we train them on how they can approach the stakeholders. (Eva*, Staff, Headquarters)

National legislation also provided a key resource which enabled people with disabilities’ expressions of voice as embodied knowledge. This was in part through the participation of FEDOMA and DPOs in developing and monitoring implementation of legislation: As you know, Malawi ratified the UNCRPD in 2012. So, this project is [monitoring] how Malawi is implementing… all the things… which have been enshrined in the UNCRPD. Like the issue of reasonable accommodation… Everything else that has to do with the implementation itself... Right now we’ve got the… Sustainable Development Goals, SDGs, 2030 agenda… The main theme of these SDGs is leaving no one behind – it has a concept of equality… As a country… how is Malawi [making] sure that persons with disabilities are not left behind in the implementation of the SDGs? As of now… the SDGs are being localised in the Malawi Growth and Development Strategy 3… I remember when… the Head of State was launching the Malawi Growth and Development Strategy, we were invited… to attend the launch itself… There was a symbolic presentation of the first document… There were less than six [institutions]… selected… They had contributed to the development of the document, and… FEDOMA was one of them. (Martin*, Staff, Headquarters)

Disability advocates had the most complete knowledge of relevant international laws and so were critical to the development of national legislation that reflects these international obligations. FEDOMA was an oft relied-upon expert for the Malawian government in a variety of national-scale undertakings. This meant FEDOMA representatives helped draft legislation, testified in front of Parliament, wrote Cabinet papers, and organized national events, as touched upon in the quote above from Martin. FEDOMA also drew on examples from other global actors to make recommendations to the Malawian government. For example, I participated in a FEDOMA drafting session for a position paper on disability representation in Parliament. In developing the report, FEDOMA staff drew on examples from Uganda, Kenya, Zimbabwe, Rwanda and Egypt. Using other countries’ examples was an exercise in cross-scalar, inter-systemic and Afro-centric interaction, which provided insight into the international spaces Malawian advocates considered most relevant to their own national system. All the exemplar countries above had some physical or virtual similarities to Malawi in place and/or social/governance system. Since disability legislation was often the product of popular organizing, if taken far enough one could see the impact of local organizing in a completely different system [for example Kenya’s disability

140  Research handbook on disability policy rights movement] across the scales of Malawi’s system and disability rights movement. This process is part of the scalar politics of disability, which foregrounds disability beyond the individual as a community, national and international phenomenon. FEDOMA’s development of relationships between actors across systems aided in the creation of horizontal networks. Disability as an embodied characteristic impacts all aspects of an individual’s life, making it necessary for advocates to work beyond ‘disability-specific’ spaces; since disability is tied to both physical and social schemas, arguably every space is ‘disability-specific’ (and/or ‘disability-(exclusion)-specific’). These networked organizations can act in solidarity with disability advocates, whether or not disability is a focal point of their current work. To this end, FEDOMA campaigned to encourage ‘disability mainstreaming’ – incorporating a disability rights lens into the work of all social organizations, reminding agents to consider the impact of their work on a population that may not be foregrounded in their minds. As part of this disability mainstreaming work, FEDOMA held panel discussions and formal public events, with a diverse audience of constituents, policymakers and other guests. The media were also invited – local and national television stations, radio stations and newspapers. While I was conducting fieldwork, I attended one of these panel discussions, held in the city of Blantyre. The panel was designed to encourage disability mainstreaming and consisted of representatives from FEDOMA and NGOs that had already committed to this work. High-profile agents with control over a variety of resources and spaces outside Malawi’s disability rights movement thus entered a space governed by FEDOMA and the norms of their movement. At the same time, people with disabilities occupied a space usually associated with normative societal power-brokerage, i.e., a high-spec conference space used for high-level events. These schemas enabled the participation of people with disabilities in social life to a greater extent than the broader schemas of Malawian society. Public and high-profile individuals’ participation in these spaces normalized these more enabling schemas, which encourage agents to amplify the voices of people with disabilities and alter other schemas, beyond FEDOMA-governed spaces. In these spaces, an authoritative collective voice was constituted and transmitted out to the public beyond the disability rights movement. In addition to their physical placement on a level playing field with NGO and funder leadership during panel discussions, disability representatives performed empowered identities through their demeanour. In the event space, FEDOMA representatives performed disabled identities that exuded empowerment and competence. As a result, individuals with disabilities gained status in the space; their expressions of voice were legitimated as knowledge and presented ‘professionally’ (Krumer-Nevo, 2009). As a result, non-disabled delegates may have left with an altered conceptualization of disability from which to act in future. Kesby (2007) raised a concern that participatory spaces can become limited to a particular time–space arena, which fails to ultimately change other spaces. However, engagement in spaces such as those described in this example enabled advocates to alter broader structures through altering how different publics think of people with disabilities. The event itself also became a ‘reference point’ or ‘reference resource’ – a ‘place-transcending’ resource on which advocates draw to reconstitute and legitimate their voices in other spaces. The use of different media to disseminate the message beyond the immediate physical space helped enable time–space convergence and access to a larger audience; just outside the main hall for the example event was a full press room, relaying an audio and video feed to various radio and TV stations. In this scene, not only was person-to-person communication used to relay information from experts to the audience

Decentralization, empowerment and grassroots engagement  141 in the room, but media communication was also engaged to spread the performances of humanized, vocal disability advocacy beyond the confines of the event space. These expanded methods of communication allowed expressions of voice to be amplified and transported into diverse moments and spaces. Just as international legislation provided legitimacy for the work of FEDOMA nationally, high-profile, public expressions of voice from FEDOMA’s centre provided a grounding for the work of grassroots advocates in the districts. Using available communication methods helped to ensure this groundwork reached more peripheral spaces, such as the districts that the DDFs operate within, laying a foundation for local advocates to build upon. High-profile events were a resource to be cited which can be seen by outsiders as legitimate, enabling further work at the grassroots.

PRIORITIZING RIGHTS AT THE GRASSROOTS The particular social and physical geographies of each district impacted its DDF. The extended organizational structure of FEDOMA emphasized embodied, place-based experiences in developing grassroots representation, which in turn were used to prioritize the rights on which a particular DDF focused their organizing efforts. Through my interactions with different district officials, advocates and community members during fieldwork, the importance of socio-physical-environmental geography, economy and social programmes on DDF development became clear. In D4, for example, several years of destruction caused by seasonal flooding led the DDF to focus on Disability Inclusive Disaster Risk Reduction in the affected areas. In D3, however, the land was flat and agricultural. Here, DDF advocates told me their focal points were drought and seasonal famine. D2’s main town and centre of commerce were in a difficult-to-access section of Lake Malawi. Barriers to physically accessing the shoreline prevented many people with disabilities from obtaining employment in local fishing industries. In this example, impairment constrained some individuals from engaging fully with their own place and landscape. While technically this physical limitation could be surmountable (though this is unlikely within the resource constraints of Malawi), it was not seen as such by D2’s DDF members. Instead of focusing on engaging people with disabilities in this aspect of the local economy, D2’s DDF worked to bring about alternative, accessible economic opportunities in the district – such as carpentry or sewing. This DDF also expanded their place-based resources, describing to me how they used a neighbouring district’s more accessible central town for activities such as posting reports. Adaptation to the context in which advocates live was part of developing collectives that could address the specific needs of local constituents, thus in turn developing place-based identities for these local collectives. Nelson (2003, p. 562) found that ‘political vocabularies and identities… became embedded and reworked over time within the nooks and crannies of daily social and political practice’. The examples of DDF foci above represented local collectives adapting over time to the everyday circumstances of their constituents. When faced with exclusion from local spaces, advocates sought inclusion but also developed alternative spaces (and other resources) specifically for their local community. These spaces were part of the work of rights activation and provided important forums for developing grassroots advocacy, constituted through the establishment of a local collective paradoxically tied to a larger organization. This broader connection between grassroots groups and the central organization enabled the critical consciousness needed to imagine alternative possibilities. It also assisted in the practi-

142  Research handbook on disability policy calities of implementing these alternative possibilities – by helping the DDFs to draw funding to local priorities. A FEDOMA manager discussed the role of the DDFs’ priority-setting in FEDOMA’s approach to fundraising: As a district, what is your priority area that you would want to focus [on]? Yes... we might do other things, but say if they choose to do economic empowerment, we do economic empowerment as their first priority. And if we do get any... calls [for proposals], or support, then we know where to redirect that support – the specific district… so that we come up with... best practices for each of the… DDFs. So, our priorities in this case as FEDOMA will not matter much. But what matters is what comes… from our constituents. (Action, Management, Headquarters)

While there were some opportunities for grassroots groups to secure funding for their campaigns, these opportunities were very limited within the financial realities of third-sector funding in low-resource settings. Their aspirations were thus challenged by systemic limitations on human and financial resources. As a result, voice and reference to legislation and large-scale events became increasingly important resources for the advocacy work done by DDFs at the grassroots level, seeking implementation of the rights they prioritized locally.

ACCESSING, ENGAGING AND PERFORMING VOICE IN DIFFERENT SPACES One way to explore the DDFs’ work is through members’ performances of voice within spaces where different (but intersecting) groups exercised structural authority: community members, Traditional Authorities (TAs) and district officials. In their advocacy work, DDF members sought to insert themselves into these spaces in meaningful ways. When DDF agents engaged in the spaces within which each of these groups conducted its activities, they sought the implementation of codified disability rights and good-faith efforts to correct violations of the human rights of people with disabilities. However, advocacy within any specific space also requires an understanding of resources and schemas which can be drawn on from other spaces, emphasizing the generalisability and transferability of resources (Giddens, 1984; Sewell Jr., 1992). In expressing agency within a given local-scale space, DDF members were dependent on the citation of resources performed, instigated or authorized in other spaces. DDF Communication with Community Members DDFs focused on ‘raising awareness’ within their own communities. Building relationships wherever possible in the broader community could encourage the inclusion of people with disabilities in community spaces. Some of the enabling schemas that aided this work stemmed from the participation of people with disabilities in spaces of established social communities, such as churches, schools and college clubs. Advocates demonstrated to their neighbours that they have things in common, which in turn humanized them to these neighbours. DDF members in these cases performed the right to express their voices as equals in these spaces. When people with disabilities were absent or excluded, these normative community spaces could reproduce schemas which further constrained the participation of people with disabilities. Engagement in these spaces required local understanding, highlighting how Haang’andu’s

Decentralization, empowerment and grassroots engagement  143 (2020) calls for an Afro-centric disability studies could help address Kesby’s (2007) concerns with empowerment beyond the enabling confines of empowering spaces. The government of Malawi created legal protections for people with disabilities, providing critical new resources and developing schema that had the legitimacy of state legislation on which advocates drew. However, the government has been slow to provide effective communication about disability rights across the districts. This created both challenges for Malawi’s disability rights movement and opportunities for advocates to disseminate information and ‘control the narrative’. Advocates’ performances of voice acted as conduits through which the virtual structures represented in legislation impacted the material and social experiences of people with disabilities ‘on-the-ground’. Just as FEDOMA ‘empowered’ grassroots members by providing them with information about disability, rights (both national and international) and services, the DDFs continued to spread this information to other people with disabilities and the general public. During interviews, all DDF members reported a level of success in this area. For example, many talked about discussions held with parents of children with disabilities, encouraging them to send their children to school by explaining the rights of children to an education, the illegality of preventing a child from attending school, and the power of an education to make a difference in the life of a child with a disability. Kingsley (DDF Secretary, D1) noted that prior to the DDF’s involvement, ‘Some young children… they were just kept indoors… The parents locked them so that they can’t go to school.’ Similarly, Maurice* (DDF Member, D2) highlighted his DDF’s work on this issue: We have identified a problem… some parents deny their children to go back to school. So we go and discuss with the parents, and we empower and give them the right to know, that this child also has the right to access education. So we help the parents to understand, and they send their children to school.

By engaging with communities on a personal basis, the DDFs saw success in advancing the implementation of certain rights at the grassroots level. In some instances, new spaces were created in order to facilitate participation and communication between disability advocates and communities. I was told about a community sports day arranged for children with disabilities to play with their non-disabled peers. The event was intended to demonstrate the ‘capabilities’ of children perceived as different. All local children were invited; though the activity was run by disability advocates, it was open to everyone and sought the integration of children with disabilities with their peers. This approach enabled disability advocates to demonstrate that they did not want to disrupt or overturn the local way of life but become part of it. Engaging in sporting activities also allowed children with disabilities to display their strengths. Lawy (2017, p. 202) described a similarly performative expression of voice: ‘By using his body... [his] voice was loud and clear.’ Disability advocates performed voice in a variety of ways during this activity – through speeches made to the assembled participants and relayed in the press, signs supporting equality for people with disabilities, and the physical statement made by children with disabilities that they are ‘able’ to play and enjoy sports, as do their non-disabled peers. In demonstrating their sporting abilities, children with disabilities ‘[changed] the terms of the argument or discussion’ (Lawy, 2017, p. 202). Smith, Bundon and Best (2016, p. 140) pointed out in their study of disabled athlete-activist identities that ‘talk is action-oriented’. That conceptualization can be reversed, and actions, in particular the deliberate actions of social justice advocates, can be viewed as ‘talk’ – or expressions of voice. Butler (1999) highlighted the performative as a critical aspect of building and altering

144  Research handbook on disability policy identity in a way reminiscent of the reproduction and alteration of enabling and constraining structures over time, impacting the social position of marginalized people(s). Butler (1999), like Giddens (1984), also noted the importance of temporality in processes of production and reproduction. The DDF’s advocacy activities were impacted by temporal factors. Some cases, such as the sporting example above, relied on temporarily created spaces. At the points in time where a temporary social space existed, miniscule shifts in schemas were made, perhaps weakening the structures that constrain the participation of people with disabilities in social life. However, this temporariness did not lead to the repetitive change required to fundamentally alter schemas, as noted in the concerns of Kesby (2007). Without spaces where people with disabilities could continually engage with non-disabled peers, there may not be lasting change made. That is not to say that temporary spaces did not make any change at all. They retained a virtual existence as a citable resource and in the alterations of structures to which they contribute. Photographing temporary events, describing them in reports (and to visiting researchers), recording them in the newspaper, etc. can help activities in empowering spaces to gain permanence outside of them, lending a material dimension to their enduring virtual existence. The acceptance of people with disability into mainstream community spaces, either temporarily or long term, could in itself be thought of as a disruption of societal norms, making changes to the schemas that constrain their participation. This could also be interpreted as an expression of people with disabilities’ voice – the statement they made is embodied in their physical presence in public spaces. Some of the disability advocates described this process of participating in daily life as ‘humanizing’ people with disabilities, broadening the construction of humanity within those spaces and altering the norm. Superstitions and views of people with disabilities as ‘magic’, ‘cursed’, etc. were challenged by DDF members’ insistence on their own ‘normality’. In these cases, their actions could be interpreted as performances of voice because for the advocates, their ‘normality’ was deliberate. Interviewees described points in their life where they were ‘just staying at home’ (Ireen, DDF Vice Chair, D2). For these individuals, participation in society was a radical act, which they grew in confidence enough to perform only after ‘being empowered’ and becoming advocates. From within these community spaces, in which they participated using physical/embodied expressions of voice, advocates imparted their knowledge about disability issues and rights to the broader public, developed legitimizing resources to be cited by other advocates, and spread the message of inclusion beyond just members of the disability rights movement (DRM). DDF Communication with Traditional Authorities4 and Village Leaders If the new schema, resources and forms of agency that DDFs operationalize were to survive and produce effects in everyday Malawian society, they needed to navigate the tension of working within and challenging the structures and forms of agency that constitute life in Traditional Authorities (TAs). TAs are Malawi’s unit of sub-district governance, which usually consists of an area encompassing several villages, headed by leaders also called Traditional Authorities. Lawy (2017) highlighted the impact of political schemas on marginalized people’s expressions of voice and emphasized the dominance of performativity in ‘acceptable’ forms when both expressing one’s voice and impacting an audience. When the DDFs communicated with Traditional Authorities and village heads, they drew on some of the same legal structures that enabled them in communicating with local community members, by emphasizing that they

Decentralization, empowerment and grassroots engagement  145 were members of the communities that Traditional Authorities lead. The DDFs were able to make these appeals through the use of resources such as government legislation about disability rights. With the Traditional Authorities, there were established rules about participation in the spaces they govern, both in specific meetings and the broader community, and additional structures which both constrained and enabled communication. Respect for (or at least participation with) authority is fundamental in Malawian society and ingrained in its current neopatrimonial governance structures, so DDF members were in some ways constrained by the official way of conducting business – gaining access to the spaces governed by Traditional Authorities was up to the discretion of the leader. DDF members sought formal audiences with Traditional Authorities or village heads, inclusion in community development projects, and invitations to speak at village meetings (Interviews 1–22). Access to these formal spaces and activities was determined by the Traditional Authority’s judgment of the merits of providing access. Advocates I spoke to during fieldwork reported that it was sometimes difficult for an individual advocate to make the initial contacts necessary to communicate with busy local leadership, particularly if that Traditional Authority did not respect the rights of people with disabilities to participate. In those cases, the hierarchical system made it difficult for an advocate to make inroads without seeming disrespectful. However, formal procedures also acted as protection for the DDF members. Following established practice lent legitimacy to advocates and reinforced their expressed desire to work within existing structures. Haang’andu (2020) highlighted the importance of engagement with local leaders for disability rights movements. Enabling legislation and temporary spaces of engagement were not enough – the legislative and network resources generated in these spaces must be citable in other spaces and times. When the DDFs did engage within the Traditional Authorities’ spaces of control, participation was enabled through their ability (both in access to knowledge resources and agency in speaking up) to cite legislation. However, given the disconnect between national enforcement and local realities, the DDFs worked between and across scales, combining resources and challenging and/or accepting particular structural constraints and enablements. This allowed them to constitute new spaces – both physical and metaphorical – transforming existing spaces in ways that provided benefits to the local disability community. The Traditional Authorities are legal entities within Malawi’s governance structure and so are answerable to the national government on certain matters. This included national programmes implemented at a local level – such as the distribution of fertilizer subsidy coupons to local communities. The legal resources created at a national level enabled DDFs to argue for their rights as citizens of Malawi, though the pathways to legal recourse were often unclear and challenging. In these circumstances, the DDFs’ formal knowledge about rights and laws, as a consequence of their training within the organizational space of FEDOMA, included knowledge about the Traditional Authorities’ duty of care. Reports on how the Traditional Authorities understood this duty, and whether they violated national disability rights law, could be passed from the local level to the national organization. The usefulness of this knowledge was, however, dependent on the Traditional Authorities’ understanding that the DDF members possessed that knowledge. Taonga, the Vice Chair of D3’s DDF, pointed out that people with disabilities who had not been ‘empowered’ with knowledge about their rights were left out of programmes like the fertilizer subsidy: There is a problem here in Malawi that they call fertilizer subsidy… They give coupons so they can go and buy the subsidised fertilizer… Sometimes they give [the coupons] to someone who is normal,

146  Research handbook on disability policy [rather] than… give [the coupons] to someone who is maybe blind, because… they have not been empowered.

The impact of expressions of voice by advocates was determined at least in part by the audience, and what the audience believed about the expresser. Lawy (2017) highlighted the difficulty for advocates of working within formal systems and through established forms of ‘acceptable’ communication, which constrain efforts to change the schemas which determine ‘acceptability’ itself. The DDF members contended with this not just in spaces governed by Traditional Authorities but also in those managed by district officials. DDF Communication with District Officials In communications with district officials, respect for authority, insider networks and the law were the primary structural factors which enabled the DDFs to do their work. For monitoring districts’ implementation of disability rights and programming, a ‘professional’ performance of voice was used. The DDF members were often in ‘lower’ status positions than the officials with whom they dealt. This schematic reflection of neopatrimonialism could be both enabling and constraining, depending on whether local advocates engaged in an almost patronage-like relationship with local officials. The DDFs could aid government officials in responding to national legislative priorities and delivering a politically supportive interest group if officials were willing to work with them. FEDOMA’s reputation as an organization, coupled with advocates’ extensive knowledge, aided them in representing their voice(s) in these more formal spaces. However, these were also the hierarchical schemas that advocates were trying to alter – so their approach was not to adhere to schemas around social position quite as strictly. Their stories in this case were meant to be equalizers. This was made clear across all the meetings between DDF members and district officials that I observed. In formal settings, the DDFs presented themselves as the experts – arguably more knowledgeable than the officials with whom they were speaking. Their voices were expressed in ways that underscored their expertise. At the same time, adherence to social mores such as using an official’s title, deferring to them as a leader, etc. reinforced the socioeconomic hierarchy and removed any threat the DDF members might have seemed to pose to that official’s position. This engendered a more receptive space, which ultimately impacted whether the DDF would be able to build a functioning, continuous relationship. This notion of status was especially complicated in cases where the DDF advocate had a well-respected job, for example as a teacher. In these cases, hierarchical structures blurred and the consideration of those hierarchies depended largely upon the space, point in time, and audience. One of the best examples of this blurring of hierarchy and use of insider networks was in the DDFs’ work toward securing accessible education. All of the DDFs I spoke with had at least one member who was a teacher. Teachers were ‘insiders’ within district education spaces, more easily able to navigate the internal workings of education departments. They were considered well educated and respectable. Englehart and Miller (2019) held that this type of multi-positionality is what constituted successful critical actors, individuals who were well positioned to alter specific structures. Many of the gains in inclusive education DDF members discussed involved these well-placed critical agents: We are also able to fight for the rights of children with disabilities… especially… education-wise. Previously, it was very tough for a person with a disability to be selected to go to a national or district

Decentralization, empowerment and grassroots engagement  147 secondary school. But… since the DDF was established, we are able to fight – going to the DEM [District Education Manager], and we are also linking with the desk officer for special needs here in [D1], saying ‘This learner… [has] been in Standard 8 for maybe 2 years, 3 years’… I am a teacher, that’s why I can… go in. So, we are able to discuss, and they say ‘Yes’... [If] a learner of disability, any type of disability, gets a pass… they are able to be considered to a boarding school for security… and for a good environment for them to learn. (Mallory*, DDF Chair, D1)

The DDFs used their existing access to governance spaces to open the door to communications about disability rights. These communications were reinforced by framing against national laws. Their ability to make progress was still to some extent affected by their audience, however, as district officials may or may not have believed in the DDF’s ability to garner support for actual enforcement from the national government. Along with utilizing insider networks to navigate dealing with district officials, the DDFs conformed to social norms such as being punctual, respectful and knowledgeable of the ‘proper channels’, to help them push their agenda forward. This included knowing how to shift the system instead of trying to topple it. They used the tactic of pushing to increase the inclusivity of existing services and programmes, instead of pushing for additional, special provisions for disability. Through presenting as a group who knew their rights and were willing to agitate for them, the DDF members altered schemas which constrained their access to services and the implementation of laws protecting their rights. Charles (DDF Treasurer, D4) put it this way: We have tried to actually… avoid budgetary issues. Extra budget issues just for disability. We are saying the same budget should be inclusive… If you look at all these ministries, we have not campaigned for any other budget. But we are saying – ‘That’s a budget. Let us make it inclusive.’

In Charles’ example, he established his expertise by communicating that he had knowledge of the budgets allocated to various programmes. However, he also refrained from framing people with disabilities as needing separate funding. Instead, he focused on officials’ duty of care to include marginalized people in existing funds for community programming. At the same time, he demonstrated awareness that officials are themselves constrained, in this case by a lack of financial resources. Reflections of the DDFs’ approaches to community communication, which strived for the inclusion of people with disabilities in the ‘normal’, were reflected in this formal argument for economic inclusion. In Malawi, there are few resources to go around. Disability advocates realized they may not be successful in convincing non-disabled community members to support their efforts if they were asking for something ‘special’ in a space where no one has enough. In this case, context was an important consideration for setting an agenda, reflecting Haang’andu’s (2020) emphasis on place-specificity in building DRMs.

CONCLUSION: MULTI-SCALAR, RELATIONAL PROCESSES OF ACTIVISM FOR RIGHTS ACTIVATION IN LOW(FINANCIAL)-RESOURCE SETTINGS FEDOMA, its headquarters staff and managers, and its grassroots advocates continue to work toward the actualization and implementation of the rights codified in the 2012 Disability Act and UNCRPD, even as Malawi’s Parliament considers the 2019 Persons with Disabilities Bill, which would combine and update previous national legislation. This proposed legislation, plus

148  Research handbook on disability policy the 2018 launch of a National Disability Mainstreaming Strategy, indicates that grassroots organizing could maintain attention on and platforming of disability rights issues at local and national levels. Exploring how Malawian disability advocates engage in processes of rights activation and implementation at the district level continues to be important, and their strategies adaptable and relevant, to this and any other future legislation. During my fieldwork, I experienced how, through performances of voice, Malawian disability rights advocates circulated new schematic conceptualizations of disability and human rights, forming the driving force between the implementation of legislative promises to date. This work helped to connect people with disabilities, developed strategies and resources for advocacy, and emphasized the power of DPOs joining together within local contexts to support one another in accessing human rights. Government representatives also learned about disability rights during these interactions, developing an understanding of local disability populations, their needs, and their political will and power. Key to organizing in low-resource contexts, where the majority of the world’s people with disabilities live, is the development of cross-scalar, ‘reference’ resources, including both local and high-profile actions and events, and how these can be used to access, engage and perform voice within different spaces. Considering space, place and time highlights the strengths and challenges of this approach, emphasizing structural constraints as fluid, dynamic, temporal and place-specific. Malawian disability advocates used their voices and knowledge resources to engage and combat these constraints, often using structural constraints to their advantage. This approach challenged some more ‘radical’ Western paradigms of rights activation but emphasized the power of understanding place and building different paradigms of disability rights organizing, moving beyond judgment toward contextual understandings. FEDOMA is one part of one country’s disability rights movement, but its work is connected to the struggle for disability human rights globally, and so the lessons learned within this context form part of a global network of resources for organizing. The processes explored in this chapter could be studied within other types of activist/advocacy organizations, social movements and/or majority-world contexts. This would provide opportunities to explore to what extent similar types of structures and imaginaries are used in various settings, as well as discover differences. Further study could contribute a broader understanding of ways to ‘do’ activism (especially in low-resource contexts). Understanding disability rights movements in majority-world contexts is critical for the continued progression of a global disability studies that is evolving, inclusive and contextually aware. Increasing the emphasis on these aspects of disability activism can also broaden the study of disability in minority-world settings, contributing to calls for intersectional justice, the continued evolution beyond rigid models of disability, and the expansion of conceptualizations of disability and inclusion.

NOTES 1. 2.

Start of endnote. Person-first language is preferred by the Malawian disability rights advocates whose work is discussed in this chapter. End of endnote. Start of endnote. ILO Convention Nos. 100, 111, 159; UN Standard Rules for the Equalization of Opportunities for Persons with Disabilities. End of endnote.

Decentralization, empowerment and grassroots engagement  149 3. 4.

Start of endnote. I acknowledge that global/national factors influence/are influenced by local activ-i ism. For the purposes of this chapter, I confine my exploration of this broader complexity to the role of international legislation. End of endnote. Start of endnote. ‘Traditional Authority/ies’ refers to both a person and a place. For this chapter: ‘Traditional Authorities’ = person and ‘TAs’ = place. End of endnote.

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12. From enabling access to enabling rights: Singapore’s practical approach to disability policy Daryl W.J. Yang, Kuansong Victor Zhuang, Gerard Goggin and Meng Ee Wong

Sometime in November 2012, guide dog user Cassandra Chiu was shopping with her daughter at a popular global clothing chain. As Chiu headed to the changing room to try on a pair of pants, she was stopped by multiple employees of the store who asked her to leave because dogs were not allowed in the store. After more than 20 minutes of argument, another staff member from the store clarified that guide dogs were in fact allowed. Chiu subsequently posted on Facebook about the experience, which went viral and was reported in the national newspaper, The Straits Times (Lin, 2012). This would not be the only incident guide dog users in Singapore face accessing public spaces with their guide dogs (Kek, 2015), most recently with Paralympic swimmer Sophie Soon being refused entry to a popular fast food chain because of her guide dog in August 2020 (Lam, 2020). Unlike other jurisdictions like Australia where the federal Disability Discrimination Act guarantees access for all assistance dogs in public places, Singapore has not enacted any legislation to prohibit the exclusion and discrimination that guide dog users face. Instead, exceptions were made under existing regulations to allow guide dogs to be brought into spaces such as the rapid transit system and food establishments where live animals are otherwise not allowed. In 2013, Minister of Law K Shanmugam called for a ‘supportive regulatory framework’ to support guide dog users in terms of the recognition and licensing of guide dogs. This contrasts with disability advocacy group Disabled People’s Association’s (DPA) call for the enactment of anti-discrimination legislation that would impose ‘hefty penalties to deter violations’ of the right of guide dog users to enter public spaces (Yap, 2013a). However, to date, this suggestion has not been taken up. This brief account of guide dog users and the absence of an enforceable right to access speaks to Singapore’s disavowal of a rights-based approach towards disability policy in favour of a focus on inclusion (Zhuang, 2016). While the human rights model has become increasingly dominant in discourses on disability policy following the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), Singapore’s experience offers a counterfactual approach to disability policy that has largely developed independently of the human rights paradigm. Just as the UN General Assembly negotiated and adopted the CRPD in 2006, Singapore was developing the 1st Enabling Masterplan (EM) to chart the development of programmes and services in the disability sector. Informed by Prime Minister Lee Hsien Loong’s vision to build an inclusive society when he took office, this policy roadmap has guided Singapore towards developing a barrier-free city that is accessible to disabled people and the implementation of policies to support the education and employment of disabled people (Wong & Wong, 2015). Yet, while it was published in 2007, the EM made 151

152  Research handbook on disability policy no substantive reference to the CRPD and neither have its subsequent iterations published in 2012, 2017 and 2022 respectively.

SINGAPORE’S ACCESS-TO-INCLUSION APPROACH TO DISABILITY POLICY This chapter charts what we describe as Singapore’s access-based approach to disability policy which contrasts with the prevailing rights-based approach that is also often referred to as the ‘human rights model’ of disability policy first coined by Quinn and Degener (2002). In their words, the human rights model ‘focuses on the inherent dignity of the human being and subsequently, but only if necessary, on the person’s medical characteristics. It places the individual center stage in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society’ (Quinn & Degener, 2002, p. 13). The human rights model builds upon the social model of disability, which conceives of disability as a form of social oppression that is located outside of the individual (Oliver, 1996). In contrast to both the human rights and social model’s focus on eliminating barriers that restrict disabled people from full participation in society, we argue that Singapore’s ‘access-to-inclusion’ approach focuses on practical pathways for disabled people to gain access to different social spheres. However, this should not be confused with the ‘right to access’ enshrined under the CRPD. A right connotes enforceability; however, disabled people in Singapore do not possess any enforceable legal right that would allow them to demand access. As we will demonstrate, the focus on ‘access to inclusion’ is not founded on the notion of rights but a pragmatic set of considerations, such as economic cost and cost efficiency. Since the adoption of the CRPD, the human rights model has come to be understood as the roadmap for disability policy. This is consistent with Offord’s (2006, p. 13) observation that ‘principles of human rights have become ubiquitous to any consideration of national and international governance, and… has triumphed as a universally accepted moral imperative and language’. Offord (2006, p. 14, emphasis in original) also highlights the importance of activating human rights by ‘both the need to contextually think human rights as well as the responsibility to speak to human rights’, paying attention to the everyday context by which human rights are negotiated and used. By attending to Singapore’s experience with disability policy, we present a challenge to the hegemony of the human rights model and further the scholarship on what its contributions and limitations are in the pursuit of social justice for disabled people across transnational contexts (Chouinard, 2018; Meekosha & Soldatic, 2011; Onazi, 2020), while considering how such rights can be activated in Singapore’s context. In particular, as Chouinard (2018, p. 5) observed, ‘an exclusive focus on human rights can encourage exaggerated confidence in the power of law alone to improve disabled people’s lives since it fails to explicitly critique the uneven geography of access to the resources needed to realize such rights.’ Singapore’s experience thus presents an opportunity to consider how disability policy can and should develop against this backdrop. Despite Singapore’s intersections with global flows around disability rights (Zhuang, 2016), disability policy has developed in a different trajectory through its ‘access-to-inclusion’ model of disability policy. As articulated in the vision of the First EM (Ministry of Social and Family Development, 2007, p. iv), the aim is for Singapore to be ‘an inclusive society where [disabled people] are given the opportunity [emphasis added] to

From enabling access to enabling rights  153 become equal, integral and contributing members of society’. While the CRPD and the human rights model are concerned with the elimination of the barriers that hinder the full participation and equality of disabled people in society (often through legislative means), Singapore’s focus on access to inclusion lends itself to the enactment of metaphorical bridges in the form of policy measures aimed at enabling disabled people to enter into and access different spheres in society. Similar to the approach towards guide dog users as described earlier, Singapore has implemented incentive mechanisms to encourage employers to hire disabled people and promulgated non-binding guidelines in facilitating digital access. This chapter demonstrates the need to move beyond a strictly legal approach towards disability rights, which requires the state to not only recognize these rights but also ensure that they can be activated in society. Traditionally, human rights scholars and practitioners have focused on the enforcement of rights as the primary mechanism by which human rights are given effect. Under this framework, Singapore performs poorly because the rights of disabled people under the CRPD are not enshrined in law and there is almost no avenue for recourse for a person whose rights have been violated. Nevertheless, Singapore has made significant strides in improving physical and digital accessibility and introduced policies and programmes to expand opportunities in employment and education for disabled people. In terms of the CRPD, we suggest that even though Singapore is not motivated by international law, its focus on enabling access to foster the inclusion of disabled people in society accords with its obligations under Article 9 of the CRPD, which imposes on states an overarching duty to ‘remov[e] barriers to ensure equal access [emphasis added] for disabled people to, among other things, built environments, goods and services, and facilities’ (Broderick, 2020, p. 393). Singapore’s experience therefore highlights the need for states not only to give effect to the rights of disabled people through the law but also to enact policies and programmes to foster an environment in which those rights can be exercised and enjoyed in a meaningful way (Degener, 2016). In attending to Singapore’s approach towards the practical realization of rights, we also build on the discussion on access by disability studies scholars, not simply as the means towards physical entry into buildings and around the world, but also in and across different spheres in society, such as economic markets and leisure (Williamson, 2015). At the same time, Singapore’s approach is marked by a ‘pervasive reliance on the individual model of disability’ which restricts the choice and control of disabled people in disability services (Zhuang, 2016, p. 634). The limitations of Singapore’s ‘access-to-inclusion’ model of disability policy thus demonstrates the unique contributions that the human rights model offers in demanding a paradigmatic shift towards the social model of disability which centres disabled people in the policymaking and monitoring process. The significance of the human rights model can also be gleaned from policy reforms that the Singapore state passed in order to comply with its obligations under the CRPD both prior to and after ratification in 2013. Yet, the CRPD has arguably had little impact in Singapore in other areas such as employment and disability representation. We suggest that this flows from Singapore’s reluctance to enshrine the rights of disabled people in law, which circumscribes the transformative potential of the CRPD to engender a paradigmatic shift from the individual model of disability to the social model of disability. Under the ‘access-to-inclusion’ framework, disabled people remain dependent on existing notions of rights in society, which has implications on their ability to access their ‘proper’ place in society and what this ‘proper’ place entails. The limitation of Singapore’s approach demonstrates the importance of the human rights model of disability, which fashions disabled people as rights-holders whose exclusion is the

154  Research handbook on disability policy result of the violation of their rights by physical, social and institutional restrictions imposed on them. Because the enablement of access is concerned mainly with the investment of resources to allow disabled people to participate in society on an equal basis rather than the vindication of their right to do so, it runs the risk of perpetuating and reinforcing the individual model of disability and the treatment of disabled people as objects of charity and welfare. The absence of any legal mechanism by which disabled people can enforce their rights severely limits their ability to fully enjoy the rights enunciated in the CRPD. Singapore’s engagement with disability rights thus lends support to Broderick’s (2020) argument that Article 9 of the CRPD cannot stop only at imposing positive obligations on states to enable access but must also afford citizens the concomitant right to enforce not only their right to accessibility but also the full suite of rights under the CRPD. Notably, the CRPD is only the third of four UN human rights treaties that Singapore has acceded to, all of which are group-specific treaties.1 Singapore has not signed on to the two foundational treaties contained in the International Bill of Human Rights, namely the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights. As the CRPD primarily affirms the existing fundamental rights recognized under these two Covenants rather than creates new ones (Mégret, 2008), the Singapore case also raises important questions as to the efficacy of these subsequent group-specific treaties that focus on affirming the disabled person’s ‘right to have rights’ when the rights in question may not already be available to non-disabled people in Singapore. Singapore’s experience with disability rights thus offers insight into how the CRPD may be implemented in ways different from what was initially conceptualized, especially given how the Western liberal conception of human rights has not been embraced by the Singapore state (Thio, 2009). In doing so, we situate our work amongst the growing presence of scholars devoted to the critical study of disability in Singapore (Chua, 2019; Goggin & Zhuang, forthcoming; Holden, 2020; Lee, Mathews, Wong, & Zhuang, 2017; Wong, Low, & Appelhans, 2017a; Wong, Ng, Lor, & Wong, 2017b; Wong & Wong, 2015; Zhuang, 2016, 2020, 2021) and add to it by illuminating how Singapore’s engagement with disability rights is informed by the ‘access-to-inclusion’ model of disability policy. Further, in discussing how Singapore’s model interacts with its pragmatic approach towards human rights, we converge with studies around human rights in Singapore (Cheng, 2004; Chua, 2014; Thio, 2009), which highlight that this pragmatic approach is based on calculated political and economic considerations, rather than a wholehearted embrace of the individualist conception of human rights. In conceptualizing Singapore’s ‘access-to-inclusion’ approach to disability policy, we reviewed and analyzed a diversity of sources, including policy documents, news reports, parliamentary debates and statutory instruments, to identify the ideological underpinnings of laws and policies that the Government has enacted. We begin the chapter by first contextualizing Singapore’s ratification of the CRPD and its ‘access-to-inclusion’ model. We then discuss three case studies to show how Singapore has enabled access notwithstanding the absence of disability rights legislation, before concluding with our thoughts on how disability rights can be activated in Singapore as the next step towards enabling access to inclusion.

From enabling access to enabling rights  155

SINGAPORE’S RATIFICATION OF THE CRPD Though it is the richest and most developed country in Southeast Asia, Singapore was the last in the region to accede to the CRPD on 30 November 2012. When pressed on this delay, Prime Minister Lee Hsien Loong explained that ‘it’s easy to sign documents… [b]ut it’s what you do in real life, which is the important thing’ (Wong, 2012). Though the CRPD was adopted in December 2007, it did not receive much attention in Singapore until 2011. During the First Cycle of Singapore’s Universal Periodic Review (UPR) in 2011, Singapore declared its intention to ratify the CRPD after clarifying its approach towards the accession of human rights treaties. The lead delegate noted that Singapore is concerned with the full and effective implementation of its treaty obligations and would only sign on to a treaty when it is confident of implementing it. He further emphasized that just because Singapore is not party to a treaty does not mean that its policies are not already largely in compliance with its provisions (see also Shanmugam, 2014). Singapore’s stance towards the signing of the CRPD reveals its pragmatic ‘access-toinclusion’ approach towards disability policy. Indeed, Singapore took steps prior to signing on to the CRPD to ensure that its laws were consistent with its obligations. One key example is the changes made to the Voluntary Sterilization Act (Cap. 347, Rev Ed. 1985) (VSA). In October 2012, the Government removed provisions in the VSA that would have fallen foul of the CRPD. Prior to the amendments, the VSA stated that the spouse, parent or guardian of a person ‘who is married and is afflicted with any hereditary form of illness that is recurrent, mental illness, mental deficiency or epilepsy’ may consent on their behalf to undergo treatment for sexual sterilization. This is in violation of the right to physical and mental integrity under Article 17 of the CRPD. In moving the amendments, the Minister for Health Gan Kim Yong (Gan, 2012) explained in Parliament that the amendment would bring Singaporean law ‘in line with the [CRPD] to accord persons with hereditary illnesses or mental disabilities with the same legal rights as others. This will then enable Singapore to accede to the [CRPD]… by the end of this year.’ Singapore’s ‘access-to-inclusion’ approach towards disability policy can also be gleaned from its launch of the EMs, a series of five-year roadmaps that chart the steps needed towards a more inclusive society. First launched in 2007, the masterplans heralded the commitment of the Government towards real changes in society and reflects a longer commitment towards inclusion first evident in the late 1980s (Zhuang, 2010). In developing the EMs, the Government also adopted a ground-up approach to garner feedback and recommendations from disabled people, their families and caregivers as well as disability service organizations. While these steps are largely consistent with the obligations under Article 33 of the CRPD to develop a coordination mechanism for the implementation of the CRPD, it does not appear that the Government had consciously done so with reference to the CRPD or to comply with its provisions. Singapore has thus taken on a different approach from the rights-based model envisioned by the CRPD despite the initial parallels and confluence of Singapore with global moments of disability rights, specifically the founding of the international disability rights movement in Singapore in 1981 and the signing of the CRPD. The year 1981 offers a keen contrast, given the founding of Disabled People’s International and the election of a Singaporean, Ron Chandran Dudley, as its first chairperson (Zhuang, 2010). Thus, while then Deputy Prime Minister Goh Chok Tong acknowledged that ‘disabled people should have the same right as

156  Research handbook on disability policy normal people to take their proper place in society and to live as independently as possible’ (Advisory Council on the Disabled, 1988, emphasis added), disability rights have been largely absent in public discourse. As Zhuang (2020) explains, disabled people in Singapore, while initially adopting the language of the social model and disability rights in the 1980s, increasingly turned towards an embrace of able-nationalism as they prioritized economic incorporation as the means towards citizenship. Similarly, Wong et al. (2017b) highlight the importance of the 1980s in the adoption of disability rights and the social model in Singapore; however, they note the difficulty of adopting disability rights in a landscape that privileges economic growth for national survival, and changes in recent years have also been driven by a calculated pragmatism. Wong et al. (2017a) have also pointed out the lack of advocacy and activism in Singapore today, calling for disabled people and their organizations to play a greater role in shaping disability policy in light of the ratification of the CRPD. This context can be gleaned from responses by civil society actors after the Government’s decision to accede to the CRPD, where only a few groups lobbied for policy change and legal reform to realize the rights of disabled people. Specifically, local human rights organization MARUAH jointly organized two public consultations with DPA, a Singaporean cross-disability advocacy organization that began as an ad hoc group after Disabled People’s International was founded. A position paper was prepared and submitted to relevant state agencies in December 2012 setting out various recommendations and areas for reform, such as the inclusion of children with disabilities under the Compulsory Education Act (Cap. 51, Rev Ed. 2001) and the enactment of anti-discrimination legislation to address the low employment rate of disabled people. The position paper also called for the ratification of the Optional Protocol ‘in the interests of greater accountability’, by allowing individuals and groups in Singapore to submit communications to highlight violations of the CRPD to the Committee of the Convention on the Rights of Persons with Disabilities (CRPD Committee) (MARUAH & Disabled People’s Association Singapore, 2012). Beyond this initiative by MARUAH and DPA, AWARE Singapore – a gender equality advocacy group – also participated in a public consultation by the Ministry of Health on amendments to the Voluntary Sterilization Act and successfully campaigned for the requirement to obtain a court order before a person without mental capacity can be subject to sexual sterilization. However, apart from these efforts, there was no concerted attempt by organizations of or for disabled people to lobby the Government as it prepared to accede to the CRPD. Singapore ratified the CRPD on 18 July 2013 with three minor reservations, which have remained to date. First, Singapore placed a reservation on Article 12(4), which obliges the state to regularly review decisions made on behalf of disabled people, on the basis that there are existing safeguards in the Mental Capacity Act (Cap. 177A, Rev Ed. 2010). Second, a reservation was placed against Article 25(e) which mandates the prohibition of discrimination against disabled people in the provision of health insurance. In its initial state report to the CRPD (Government of Singapore, 2016), this was justified on the basis that Singapore does not interfere with the commercial underwriting decisions of private insurers or mandate the coverage of disabled people. However, the Government has indicated its intention to withdraw this reservation after developing guidelines that would prohibit insurers from treating disabled people differently unless such differential treatment can be justified (Wang & Lim, 2020). The third reservation relates to Article 29(a)(iii), which requires that disabled electors be allowed assistance in voting by a person of their own choice.

From enabling access to enabling rights  157 As Singapore adopts a dualist approach to international law, the rights enshrined under the CRPD are not binding until they are incorporated by the enactment of domestic legislation. To date, Singapore has not enacted any law that allows disabled people to enforce their rights under the CRPD such as the right to equality or the right to reasonable accommodation. However, following the ratification of the CRPD in 2013, government agencies took steps in accordance with the state’s obligations under Article 8 of the CRPD to raise awareness on disability and promote the rights of disabled people. The National Council of Social Service launched multiple guidebooks and campaigns to raise awareness about the CRPD (Government of Singapore, 2016). Yet, the effect of the CRPD on other policy reforms is less clear. For example, in November 2016, the Ministry of Education appointed an advisory panel to review the exclusion of children with disabilities from compulsory primary education after this was first proposed in the Second EM (Ministry of Social and Family Development, 2011). While the panel recommended that compulsory education should be extended to all children regardless of disability, it did not make any reference to the CRPD. The Third EM (Ministry of Social and Family Development, 2017) also made no direct reference to the CRPD except a brief note that the strategies outlined in the document would ‘complement’ the progressive realization of Singapore’s obligations under the CRPD.

ENABLING ACCESS: SINGAPORE’S PRAGMATIC APPROACH TO DISABILITY RIGHTS In this section, we discuss Singapore’s ‘access-to-inclusion’ approach towards disability policy and the relatively absent role of rights in relation to three different spaces: physical accessibility, digital accessibility and employment. We highlight distinct features of Singapore’s approach to disability policy, which does not emanate from the enforcement of rights but careful calculations as to the cost and benefit of its policies and aims at the enablement of access so that disabled people can enter and participate in different spheres of society. The Making of Physical Accessibility in Singapore Central to the discussion of Singapore’s approach of enabling access are the changes to address the inaccessibility of the country’s metro system – known as the Mass Rapid Transport (MRT) – launched in 1987. As we explained earlier, 1981 reflected a shift in how disability was thought about in Singapore. Disabled people began to advocate for their inclusion in society and for equal access and opportunity in various areas, such as in education, physical accessibility and employment. Zhuang (2020) highlights a key contestation occurring over the accessibility of the MRT before its launch. As he points out, disabled people advocated for the metro to be accessible, using the language of the social model and disability rights. However, this was to be of no avail as state agencies explained away their concerns by raising safety considerations. In brief, this episode demonstrates how the state’s approach towards disability was born out of paternalistic concerns and cost efficiency. While 1987 marked the metro’s inaccessibility when it was launched, the subsequent Advisory Council on the Disabled, the first extensive state-led masterplan that sought to highlight ways to integrate disabled people into society, was set up in 1988 and called for a mandatory accessibility code. The Council noted how improving the accessibility of the built

158  Research handbook on disability policy environment would benefit not only disabled people, but also the elderly, pregnant women, and those with ‘mild but common medical disabilities such as knee arthritis’ (Advisory Council on the Disabled, 1988, p. 59). It further added that legislating accessibility ‘should not significantly increase costs or development problems during implementation’ (Advisory Council on the Disabled, 1988, p. 62). While this led to the enactment of the Code on Barrier-Free Accessibility in Buildings (Accessibility Code) in 1990, the eventual achievement of the metro’s accessibility for wheelchair users took another decade: it was only in 1999 that the Government decided to retrofit the metro for access. In announcing this, the then Minister for National Development noted that it was to make the MRT ‘accessible to the growing numbers of old and frail commuters’ (Chua, 1999), rather than to give effect to the rights of disabled people to use the public transport system on an equal basis. This case demonstrates how while it was disabled people’s activism that initially called attention to the need for accessibility, the decision to enact what is now the Accessibility Code was not based upon rights, but rather practical concerns. Access arrived because of policy and cost calculations, rather than the enforcement of rights. Further, the Accessibility Code only applied to new buildings and not existing buildings. Given the significant cost involved in upgrading existing buildings to meet accessibility requirements, a S$40 million Accessibility Fund was set up in 2007 to incentivize building owners to undertake upgrading projects to provide basic accessibility features. This speaks to the Government’s sensitivity to commercial considerations and its use of incentives rather than legislation to build a more accessible Singapore. In relation to public spaces, the Public Sector Buildings Upgrading Programme was launched in 2006 and has resulted in almost universal accessibility in most public buildings and facilities, including hospitals, government offices and public transport terminals. However, there are still gaps in implementation as some older buildings are still not accessible (Ong, 2019). Digital Accessibility in a Smart Nation Turning to more recent developments, the digitization of Singapore has gained speed in the last decade, with plans envisioning a nation enabled by technology enacted by the state. As Goggin and Zhuang (2022) highlight, disability is a key concern shaping Singapore’s plans for digitization, with accompanying plans highlighting the need to design (digitally) for accessibility. The embrace of digital technology in Singapore is underpinned by economic concerns, to remain relevant in an increasingly digitized global economy. As the Smart Nation plans highlight, the embrace of technology reflects the pervasiveness of the digital; digitization thus allows Singapore to stay ahead of the curve and to ‘continue to prosper and stay relevant’ (Smart Nation and Digital Government Office, 2018, p. 3). The state’s embrace of disability in the Digital Readiness Blueprint introduced by the Ministry of Communications and Information and the Digital Services Standards introduced by GovTech highlights the ways by which digital inclusion is to be tackled by the public sector. In particular, the Blueprint lays out some 59 standards that government digital services must abide by (GovTech, 2018). Government agencies must meet a minimum level of access and provide for all members in society who transact digitally, including disabled people. Like physical accessibility, the focus on web accessibility appears to also be driven by concerns with an ageing population. For instance, in 2016, the Government launched the SS 618 Guidelines on User Interface Design for Older Adults, which is aimed at encouraging

From enabling access to enabling rights  159 active ageing among older adults and promotes Singapore as an age-inclusive society (Spring Singapore, 2017). However, while government agencies must meet minimum standards of digital access in accordance with the Web Content Accessibility Guidelines (WCAG) 2.0, Singapore has not gone so far as to demand that all of society must do the same. Private businesses, non-governmental organizations and other website owners are not obliged to comply with the WCAG 2.0 and there has not been any effort to encourage website developers to consider accessibility issues. Notably, while GovTech – Singapore’s digital services agency – has developed a web accessibility testing tool, it was targeted specifically at software developers working on Government e-services (GovTech, 2020). Moreover, though the Government has committed itself to complying with the WCAG 2.0, this is not enshrined in law. There is no avenue by which disabled persons can enforce this commitment and hold the Government to its word beyond informally writing to the relevant government body to highlight that a website is not compliant. Similar to its approach to web accessibility, Singapore has not mandated the universal provision of captioning and sign language interpretation on traditional media like television programmes despite repeated requests from D/deaf and hard-of-hearing people (Sivalingam, 2020; Yap, 2013b). Subtitles were introduced on important broadcasts, such as the daily news bulletins, and live signing is provided for in key government communications, including ministerial statements and a series of national broadcasts on the COVID-19 pandemic (Bhatia, 2020). In response to demands to mandate sign language or live captioning, government authorities have often responded by highlighting the logistical challenges in doing so (Ho, 2013). The lack of universal provision reflects the limitations of Singapore’s approach towards physical and digital accessibility, one based not upon enforceable rights but rather on goodwill and voluntary compliance, especially from private businesses. The ‘Business Case’ for Disability Inclusion in the Workplace The absence of rights is made clearer in the case of disability employment. According to the 2019 Comprehensive Labour Force Survey by the Ministry of Manpower (MOM) (Timah, 2019), less than 30 per cent of disabled residents between the ages of 15 and 64 were employed, as compared to 68 per cent for the general population (Manpower Research and Statistics Department (MSRD) of Ministry of Manpower (MOM), 2021). This low employment rate can be partly attributed to ableist and discriminatory attitudes at the workplace. A 2018 report published by DPA on the discrimination faced by disabled people at the workplace reported cases of ‘blatant discrimination or outright exploitation’ as well as ‘paternalistic or patronising behaviour’ (Disabled People’s Association Singapore & Institute of Policy Studies, 2018). In response to a 2018 public consultation on the review of the Employment Act (Cap. 91, Rev Ed. 2009), DPA partnered with AWARE Singapore to contribute a joint submission which called for the enactment of anti-discrimination legislation. The groups cited Article 27 of the CRPD – which obliges states to ‘take appropriate steps to prohibit discrimination on the basis of disability throughout recruitment, hiring, career advancement and redress of grievances’ – in their submission. They highlighted how the Government’s non-legislative approach ‘does not allow it to properly address’ its obligations under the CRPD (AWARE Singapore & Disabled People’s Association Singapore, 2018). Under the Employment Act, the only instance where discrimination is legislatively prohibited is wrongful dismissal based

160  Research handbook on disability policy on age, gender, disability or some other characteristic. As a matter of policy, the MOM may impose administrative penalties on employers that practise discriminatory hiring to prohibit them from obtaining work passes to hire foreign employees; however, as this policy was mainly enacted to address the preferential hiring of foreigners, its effectiveness in relation to disability discrimination is unclear. Until August 2021, the Government resisted calls to outlaw employment discrimination explaining that its focus on expanding employment opportunities and skills development has led to improvements (Lee, 2020). This includes the Open Door Programme, which was launched in 2014 to increase the employability of disabled people and support employers in hiring them. It also provides funding to employers to subsidize the cost incurred to recruit, train and provide accommodations to their disabled employees. In April 2021, the Government announced the establishment of ‘Enabling Business Hubs’ around the country to provide training and employment, shared facilities, and services such as job coaching for disabled people and employers (Goh, 2021). As with its approach towards accessibility, Singapore’s approach towards the employment of disabled people is not so much about affirming rights so as to eliminate the discriminatory attitudes that prevent disabled people from being hired or promoted in the workplace. Rather, the Singapore state has focused on enabling disabled people to be employed through incentive structures that encourage employers to hire disabled people. This approach is perhaps well captured in the Enabling Employment Pledge that was launched in 2020 by Singapore’s President Halimab Yacob, who explained that she wanted to ‘encourage more employers to take the first step and open their doors to persons with disabilities’ (President’s Challenge, 2020). The employment of disabled people, just like their ability to access physical and digital space, is yet again up to the goodwill of employers and the financial support of the state. However, as Lee et al. (2017) note, this ‘business case’ of inclusion is insufficient and the ‘moral case’ – as enshrined in enforceable statutory recourse against discrimination – has been neglected in Singapore. At the time of publication, though the Singapore government has announced its plan to legislate against workplace discrimination, it does not appear that the new law will prohibit indirect discrimination or the denial of reasonable accommodation, which would severely limit the law’s ability to address discrimination against disabled workers.

ENABLING RIGHTS AS AN EXTENSION OF ENABLING ACCESS This chapter has demonstrated that the Singaporean approach focuses not on the enforcement of rights but on enabling access. While this approach has undoubtedly led to tangible positive outcomes in terms of fostering the inclusion of disabled people in different spheres of life, the reluctance to entrench disability rights in law has limited the transformative potential of the CRPD. Conceptually, it also demonstrates the interplay between rights and obligations in ongoing debates surrounding the content of the CRPD, which not only recognizes the rights of disabled people but also imposes obligations on states to give effect to those rights (Broderick, 2020). The human rights model is unique in its demand for the paradigmatic shift in attitudes towards disability and the elimination of barriers in addition to the enablement of access. In particular, we have highlighted the issues within these case studies where much more can be done. Ultimately, notwithstanding the many positive outcomes Singapore’s approach has

From enabling access to enabling rights  161 achieved, this focus on enabling access is insufficient to fully realize and activate the rights of disabled people. In this final section, we turn to the issue of disabled self-representation to illustrate this. The principle of self-representation as encapsulated in the slogan ‘nothing about us without us’ has largely gone unrecognized in Singapore’s disability policy approach, even though it is the birthplace of the international disability rights movement in 1981. As Chiu (2019) – the same guide dog user we began this chapter with – points out in a commentary, there is a lack of representation among organizations serving disabled people in Singapore. Thus, while Article 4(3) of the CRPD obliges state parties to ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations’ in the development and implementation of legislation and policies to implement the CRPD, there is only a handful of disabled-led groups in Singapore, namely the DPA, the Handicaps Welfare Association, and the Singapore Association of the Visually Handicapped (SAVH) that would qualify as representative organizations as defined in General Comment No. 7. Notably, in March 2021, the Minister for Social and Family Development stated in Parliament that the proportion of disabled people on the board or management of social service organizations was not tracked and these organizations would determine the composition of their leadership teams based on their ‘organisational objectives’ (Zulkifli, 2021). These objectives presumably do not include disability representation and the Minister’s response speaks to a lack of appreciation for the importance of this principle among policymakers and even those within the disability sector, even though this is a key principle understanding the CRPD and the disability rights movement. Again, this can be attributed to the focus on practical outcomes rather than the principles underpinning disability rights and disability justice. This is not to say that disabled people are excluded from the policymaking process entirely; indeed, the Government has consulted disabled people, usually through service organizations, in identifying their needs and developing the EMs to address those needs. A key incident around disabled self-representation happened in the SAVH, which mandates a majority of blind people on its board in its constitution. In 2016, the sighted president proposed to remove the constitutional quota to ‘attract fresh talents, regardless of whether they can or cannot see, to improve how the charity is run’ (Tan, 2016). According to the then Executive Director, this was because the number of blind members ‘with the skills or knowledge needed to boost the management of the charity’ was limited (Tan, 2016). The same proposal was put up in 2017 but in both years was voted down by members of the association (Hiew, 2017). About a decade ago, a similar controversy arose during election season at the SAVH. Addressing what he considered to be ‘too much politicking’, the then Minister for Community Development, Youth and Sports had also asserted that ‘[i]t will be a very, very sad day if we say that it is only the visually handicapped who will look after the visually handicapped’ (Ng, 2005). Because the pragmatic approach towards disability policy focuses primarily on meeting needs and enabling access, rather than the respect for and protection of the rights of disabled people, it is unsurprising that this principle of self-representation has fallen by the wayside because it is considered neither necessary nor relevant to achieving the policy outcomes. In spotlighting the issue of disabled self-representation, Singapore’s experience highlights the necessity of both enabling access and enforcing rights in realizing the full and equal enjoyment of all human rights and fundamental freedoms by disabled people. The importance for the state to invest its resources and develop policies to incentivize and encourage stakeholders to buy into the goal of disability inclusion, or what we have characterized as

162  Research handbook on disability policy the measures taken to enabling access, cannot be understated. However, the enablement of access may not be enough without also entrenching the rights of disabled people. The case of disabled self-representation reveals the entrenched discriminatory view that disabled people are incapable of running their own organizations. Consequently, the pragmatic focus on access reinforces the problematic worldview that regards disabled people as objects of charity and welfare rather than rights-holders. This is not to say that we advocate for the exclusion of non-disabled people from organizations serving disabled people; rather, there is a need for stronger representation of disabled people across organizations that serve them. Indeed, there is a tacit acknowledgement within state mechanisms such as the EM to also have disabled representation on the committees, but such moves are often limited to particular spheres and depend on the benevolence of organizing parties, rather than the principles enshrined in the CRPD. At the time of writing, Singapore will be undergoing its first periodic review before the CRPD Committee and it remains to be seen how its involvement with the CRPD process at the international level might lead to a stronger engagement with disability rights in its disability policy. Looking ahead, the next step in the fulfilment of access as we have highlighted throughout this chapter is the embrace of the human rights model. Singapore has thus far realized some of the rights of disabled people enshrined in the CRPD by enabling access in different spheres of society. Ultimately, the full and equal participation of disabled people in society demands both the enablement of access and rights, which Singapore’s experience has demonstrated to be mutually constitutive and interdependent. While Singapore’s access-to-inclusion approach has enabled disabled people to enter into different spheres of society, this chapter offers a sobering reminder that the human rights model remains crucial to ensuring that disabled people are able to enforce their rights and enjoy full and equal participation in society.

NOTE 1.

Start of endnote. Singapore ratified the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) and the Convention on the Rights of the Child (CRC) in 1995 and the International Convention on the Elimination of All Forms of Racial Discrimination (CERD) in 2017. End of endnote.

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164  Research handbook on disability policy Meekosha, H., & Soldatic, K. (2011). Human rights and the global south: The case of disability. Third World Quarterly, 32(8), 1383–1397. doi:10.1080/01436597.2011.614800 Mégret, F. (2008). The disabilities convention: Human rights of persons with disabilities or disability rights? Human Rights Quarterly, 30(2), 494–516. doi:10.1353/hrq.0.0000 Ministry of Social and Family Development. (2007). Enabling Masterplan 2007–2011. Singapore: Ministry of Social and Family Development. Ministry of Social and Family Development. (2011). Enabling Masterplan 2012–2016. Singapore: Ministry of Social and Family Development. Ministry of Social and Family Development. (2017). 3rd Enabling Masterplan 2017–2021. Singapore: Ministry of Social and Family Development. MSRD MOM. (2021). Labour Force in Singapore 2020 Singapore: Manpower Research and Statistics Department, Ministry of Manpower. Ng, S. (2005, 2 October). Too much politicking at SAVH. The Straits Times. Offord, B. (2006). Activating human rights through questions of value and activism. In E. J. Porter & B. O. Offord (Eds.), Activating Human Rights (pp. 13–29). Bern: Peter Lang. Oliver, M. (1996). Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Onazi, O. (2020). An African Path to Disability Justice. Cham: Springer. Ong, L. (2019, 10 July). Students producing map to help people with disabilities navigate CBD. Today. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Retrieved from https://www.todayonline.com/singapore/students-producing-map-help-disabled -people-navigate-cbd ​ ​ President’s Challenge. (2020). President Halimah launches Enabling Employment Pledge in conjunction with President’s Challenge 2020 [Press release]. Retrieved from https://www.presidentschallenge .gov.sg/files/Enabling-Employment-Pledge-in-conjunction-with-President-s-Challenge-2020-Launch ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -Media-Release.pdf ​ ​ Quinn, G., & Degener, T. (2002). Human Rights and Disability. New York and Geneva: United Nations. Shanmugam, K. (2014). Ratifying With Reservations Major Human Rights Treaties and Conventions. (92). Singapore Parliamentary Debates, Official Report. Sivalingam, P. S. (2020, 6 July). Forum: Campaigning must account for those with hearing loss. The Straits Times. Smart Nation and Digital Government Office. (2018). Smart Nation: The Way Forward. Retrieved from https://www.smartnation.gov.sg/files/publications/smart-nation-strategy-nov2018.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Spring Singapore. (2017). Press release: Launch of two Silver Industry Standardisation Initiatives. Retrieved from National Archives of Singapore https://www.nas.gov.sg/archivesonline/speeches/ ​ ​ ​ ​ ​ ​ ​ record-details/184ceea9-13ae-11e7-afb1-0050568939ad ​ ​ ​ ​ ​ ​ Tan, T. (2016, 28 August). Bid to change rules at association for blind fails. The Straits Times. Retrieved from https://www.straitstimes.com/singapore/bid-to-change-rules-at-association-for-blind-fails ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Thio, L.-a. (2009). Singapore human rights practice and legal policy: Of pragmatism and principle, rights, rhetoric and realism. Singapore Academy of Law Journal, 21(1), 326–362. Timah, C. (2019, 2 September). Almost 3 in 10 people with disabilities who are of working age are employed: MOM survey. ChannelNewsAsia. Retrieved from https://www.channelnewsasia.com/ ​ ​ ​ ​ news/singapore/disability-pwds-in-employment-mom-survey-parliament-zaqy-11863568 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Wang, D., & Lim, Y. J. (2020, 7 October). Forum: Insurers expected to deal fairly with all clients, including those with disabilities. The Straits Times. Retrieved from https://www.straitstimes.com/opinion/ ​ ​ ​ ​ ​ forum/forum-insurers-expected-to-deal-fairly-with-all-clients-including-those-with-0 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Williamson, B. (2015). Access. In R. Adams, B. Reiss, & D. Serlin (Eds.), Keywords for Disability Studies (pp. 14–16). New York: New York University Press. Wong, M. E., Low, J. M., & Appelhans, P. (2017a). Understanding CRPD implementation in Singapore. In D. L. Cogburn & T. K. Reuter (Eds.), Making Disability Rights Real in Southeast Asia (pp. 143–166). Lanham, MD: Lexington Books. Wong, M. E., Ng, I., Lor, J., & Wong, R. (2017b). Navigating through the ‘rules’ of civil society: In search of disability rights in Singapore. In J. Song (Ed.), A History of Human Rights Society in Singapore (pp. 169–186). Abingdon: Routledge. Wong, R., & Wong, M. E. (2015). Social impact of policies for the disabled in Singapore. In D. Chan (Ed.), 50 Years Of Social Issues In Singapore (pp. 147–166). Singapore: World Scientific.

From enabling access to enabling rights  165 Wong, T. (2012, 29 September). Govt to sign UN pact on rights for the disabled. The Straits Times. Retrieved from https://www.asiaone.com/News/Latest%2BNews/Singapore/Story/A1Story20120927 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -374130.html ​ Yap, A. (2013a, 13 September). Allowing guide dogs with the blind is a right, not a privilege. Today. Retrieved from https://www.todayonline.com/voices/allowing-guide-dogs-blind-right-not-privilege ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Yap, A. (2013b, 15 November). Help deaf, blind access broadcast, online media. The Straits Times. Zhuang, K. V. (2010). Enabling the Singapore story: Writing a history of disability. In B. Lockhart & T. S. Lim (Eds.), Monograph 42: Studies in Malaysian & Singapore History: Mubin Sheppard Memorial Essays (pp. 37–71). Kuala Lumpur: Malaysian Branch of the Royal Asiatic Society. Zhuang, K. V. (2016). Inclusion in Singapore: A social model analysis of disability policy. Disability & Society, 31(5), 622–640. doi:10.1080/09687599.2016.1197821 Zhuang, K. V. (2020). At the margins of society: Disability rights and inclusion in 1980s Singapore. Disability and the Global South, 7(1), 1813–1829. Retrieved from https://disabilityglobalsouth.files ​ ​ ​ ​ ​ .wordpress.com/2020/05/07_01_02.pdf ​ ​ ​ ​ ​ ​ ​ Zhuang, K. V. (2021). The included: Disability-led arts within inclusion in Singapore. Journal of Literary & Cultural Disability Studies, 15(4). https://doi.org/10.3828/jlcds.2021.36. ​ ​ ​ ​ ​ ​ ​ Zulkifli, M. (2021). Representation of Persons with Disabilities on Boards and Management of Social Service Organisations. Singapore Parliamentary Debates, Official Report.

13. An accessible public transit system as a right for people with disabilities in Taiwan Kuo-yu (Lisa) Wang and Pey-chun Pan

We begin this chapter with a personal narrative written by the first author to demonstrate the struggles she faces as a person with walking limitations living in a society that does not consider a remedy for these struggles to be her right. I was born in 1958. Back then, raising a child with disabilities was a family business, not to mention the need to solve my transportation problems, getting from home to school, from school back home, and to go see a doctor. All these movement and transportation issues were the family’s burden. My mother had to work to earn extra income to pay my transportation fee, while in my pocket there was some extra change to use just in case there was bad weather or I missed the bus to come home. My mother told me that it was the transportation fee that was the major financial burden for my family. None of us thought at the time that what would trouble us most would be society’s reluctance to share our heavy burden.

In this chapter we apply a human rights model to analyze disability policy in Taiwan (Degener, 2016), with an emphasis on the transportation system. Under a human rights model, people with disabilities have basic rights as human beings and as citizens, and these rights are not compromised by physical or mental disability. A human rights model of disability covers more than anti-discrimination law; it also takes account of the experiences of impairment of different stakeholders in formulating new policies, as reasonable accommodation to the needs of the impaired persons becomes vital to maintaining their rights in various social settings such as schools, hospitals, businesses, and recreational facilities. A human rights model of disability is focused on how to satisfy the diverse needs of people with disabilities so they can participate fully in social life (Maliszewska-Nienartowicz, 2020). The right to fully participate in social life and engage with society is at the core of human rights for people with disabilities globally (Földesi & Fördős-Hódy, 2019). The most recent trend in disability policy has been to expand the definition of the components of the social environment that people with disabilities encounter on a daily basis. These additions include the physical facilities and institutions that regulate the legal, social, economic, and cultural aspects of the social environment (Fina, 2017). A human rights approach to disability emphasizes the diversity of experience of people with disabilities and how their social environment disrupts their opportunities for social participation more than those of the rest of society (Broderick & Watson, 2020). The duty falls upon the state to develop a budget and strategy for investing the funds required to make the social environment accessible to people with disabilities (Lawson, 2014). Ensuring that people with disabilities can enjoy their rights of social participation requires an accessible and affordable public transit system. The government must not only reject discrimination against people with disabilities in the provision of services, but it must also show

166

An accessible public transit system as a right for people with disabilities in Taiwan  167 how the transit system can accommodate all the different kinds of impairment they may have (Broderick, 2020; Velho et al., 2016). Transit authorities must take these differences into account in designing the system. For example, people with a hearing impairment need to easily read the board that supplies travel information, and people with a visual impairment need to understand the voice broadcasting travel directions. The above-mentioned practices form the foundation of the right of people with different disabilities to have the same capacity as others to enjoy the benefits of a social life. Our position is that without a universal, accessible, and affordable public transit system, it is not possible for people with disabilities in Taiwan to engage in all the activities they want to. To fulfill its duty to modify the physical environment, the state must upgrade the existing transportation system and services. In this chapter, we describe the Taiwan government’s efforts to provide adequate transportation services to people with disabilities in the last four decades and explain how transportation policy and its execution have become extraordinarily complex. For example, unless front-line drivers or service providers are sensitive to the needs of people with disabilities, the public transit system can be a barrier to the accommodation of these needs. We demonstrate why the solution to the problem requires the government to stop treating its provision of services to people with disabilities as charity, under which rubric they just give what they can spare out of compassion, but rather as the fulfillment of a fundamental human right that, as such, must fully meet the recipients’ needs.

THE UNITED NATIONS DISABILITY HUMAN RIGHTS GUIDELINES AS APPLIED TO TRANSPORTATION: ARTICLE 9 OF THE CRPD The United Nations (UN) included guidelines for government transportation policy in its Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006). In this chapter, we have sought to operationalize our above-stated goal of applying a human rights model of disability to Taiwan’s transportation system by evaluating how well the government’s current transportation policies and their implementation conform to the CRPD guidelines, and how further conformance might improve the transportation system in the future. Specifically, we attempt to answer the following questions: (a) What can the CRPD guidelines contribute to improve the social participation of people with disabilities in Taiwan? and (b) What can be done to force the government to change its policies to better meet these guidelines? The CRPD divides the social barriers experienced by people with disabilities into different categories, but it identifies creation of an accessible environment as the most important measure that can be taken to eliminate social discrimination against this population (Liisberg, 2015). In 2010, Janet Lord presented to the UN’s CRPD committee a set of accessibility recommendations to serve as the cornerstone of the CRPD. She argued that without accessible transportation, relevant information, buildings, and roads, people with disabilities cannot enjoy their basic human rights in any society (Lord, 2010). Article 9, Section 1 of the CRPD begins as follows: 1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information

168  Research handbook on disability policy and communications, including information and communication technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: (a) Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces; (b) Information, communications and other services, including electronic services and emergency services.

The above excerpt requires the State to eliminate and reduce the barriers which prevent people with disabilities from fully participating in social life and enables them to live independently. Note that there are three major accessibility issues addressed in Article 9: (a) transportation, (b) information and technology, and (c) buildings, including both the inside and surrounding grounds (United Nations, 2006). In 2019, the UN released a document entitled ‘CRPD and its Human Rights Indicators’. These indicators were composed by a committee led by the Office of the United Nations High Commissioner on Human Rights and funded by the European Union (European Union, 2018). The document identifies the indicators of the Article 9 categories as (a) roads and transportation, (b) buildings and indoor and outdoor facilities, and (c) services open to the public, which include among other services the communication and provision of information. The CRPD indicators are presented in a three-by-three matrix, illustrated in Table 13.1 below. Table 13.1   Structure Process Outcome

Matrix illustrating the organization of the indicators on accessibility presented in Article 9 of the CRPD Road

Building

Information

 

 

 

 

 

 

 

 

 

Here we focus on the top-left cell of the matrix: the structure dimension as applied to roads and transportation. Article 9.1 states the following requirement: ‘Legislation must be enacted ensuring the right to access, on an equal basis with others, to the physical environment, transportation, services, information and communications, including ICTs and other facilities and services open or provided to the public, in both urban and rural areas’ (European Union, 2018). What is new in this formulation is the explicit recognition that it is the responsibility of the government to pass legislation to ensure that people with disabilities have the same access as others to the transportation system and related services. Article 9 (United Nations, 2006) and General Comment No. 2 released by the CRPD Committee (United Nations, 2008) characterize the government’s role in the transportation system as twofold: (a) follow the rules and guidelines in the regulations on the accessibility of resources for people with disabilities; and (b) enforce cooperation between the private and public sectors in implementing these regulations. Thus, it is necessary to analyze multiple complicated descriptions of a government’s role to understand how the state tries to fulfill its obligations under the CRPD (Lawson, 2014). In the rest of this chapter, we describe our methodology for evaluating Taiwan’s conformance to the CRPD guidelines, give a brief historical review of the development of disability policy in Taiwan, and then describe the current transportation policies and practices. In the

An accessible public transit system as a right for people with disabilities in Taiwan  169 final section, we discuss how the CRPD guidelines can contribute to the future development of comprehensive and inclusive transportation policies in Taiwan. Our analysis has two levels, macro and micro. At the macro level, we review the history of transportation policy and legislation in Taiwan. At the micro level, we describe the daily lives of people with disabilities, how they need to leave home to shop, go to school, go to work, and attend religious services or other community programs.

METHOD The authors belong to a research team; the purpose of which is to develop CRPD indicators that include accessibility guidelines for people with disabilities in Taiwanese society. The team consists of five research faculty from five different universities in Taiwan, plus two assistants from the Eden Social Welfare Foundation, which commissioned the project. The project was funded by the Ministry of Health and Welfare. To accomplish its mission, the team collected a wealth of information from multiple sources, combining qualitative analysis of transcripts from eight focus groups with an analysis of historical documents. It is the portion of this information related to the transportation guidelines that we consulted to write this chapter. The data we used came from interviews of disabled persons living in different cities in Taiwan, representatives from organizations that advocate for people with disabilities, and historical records from the Legislative Yuan in Taiwan. The experiences of people using the public transit system in Taiwan were particularly valuable and contributed greatly to the authors’ insights about accessibility issues within the system. The team’s interviews of people with disabilities occurred in focus groups in which four to eight persons with disabilities participated. The interviews were transcribed, keyed into our data system, and then sorted by date of the focus group. Another source of information for the chapter was the records of workshops and meetings of our research team held from 2017 to 2020. The historical records, which pertain to the process of composing disability legislation and the legislation itself, came from the Law Databank of Taiwan, which is sponsored by the Legislative Yuan. The authors searched for records about all the legislation passed by the Legislative Yuan over the past four decades. The records include word-by-word transcriptions of committee meetings and public hearings where legislators expressed their ideas or opinions about prospective legislation. The authors used keywords to search the databank for information on legislation related to disability, read through all the relevant records, and then downloaded them. In summary, the data for the chapter came from two sources: interviews of people with disabilities and their advocates from 2017 to 2020 and historical records from the Law Databank of Taiwan from 1980 to 2020. In the next section, we review the disability legislation passed by the Taiwan government.

THE EVOLUTION OF DISABILITY LEGISLATION AND POLICY IN TAIWAN The Taiwan disability system has been in existence for over four decades. During this period, the legislation has kept expanding, from 24 articles at the outset to over 106 articles in nine

170  Research handbook on disability policy chapters at present. In Table 13.2, we have listed key events in the history of disability legislation in Taiwan during this four-decade period, from 1980 to 2020. The table includes titles of the disability laws and their revisions, definitions of the disability categories specified in the legislation, the numbers of articles and chapters in each law, and, finally, the content of the laws related to transportation policy and practices. Before the CRPD: 1980 to 2006 When the first disability legislation in Taiwan, the Welfare Law for People with Disability, was passed in 1980, transportation policy was seen as a way to express the sorrow that society felt for people with disabilities. The way the government chose to deliver this message to the population was to provide people with disabilities and their families the financial resources they needed to live, through cash assistance programs, tax deductions, subsidies, and discounted fees. The law also established an administrative system that specifies which categories of impairment are to be officially recognized as disabilities. All the statistics on the disabled population of Taiwan are registered in a disability data system, but the system probably underestimates the real number of people with disabilities. The government also introduced a disability registration system but tied it to the system that assigns the impairment categories to individuals. Therefore, to gain access to services, people with disabilities first must be designated as having a particular disability. After 1980 Taiwan revised its disability policies and service systems through a series of reforms of the Welfare Law for People with Disability. Three major transportation policies were established from 1980 until 1997. The first policy involved discounted fees. The first discount, established by the 1980 Welfare Law, was a deduction of up to 50% for use of the public transit system by disabled persons. Another discount, established by Article 7 of the Vehicle License Act of 1990, was the equivalent of waiving the driver’s license fee. The second policy was to subsidize taxi companies to encourage them to purchase accessible taxis for people with disabilities. The third policy was to make transportation more accessible to people with disabilities by offering them personal assistance when they needed help with boarding, sitting in, and exiting a public vehicle. It was not until 1997, with the passage of the Welfare Rights Protection Act of People with Disabilities, that transportation policy and practices gradually began to change in fundamental ways. The main reform was to assign the major government ministries the primary roles in delivering services to people with disabilities (Legislative Yuan, 1979). The Ministry of Transportation and Communication was put in charge of administering the transportation policies and practices, including those pertaining to the accessibility of the transportation and communication systems. Since then, the Ministry has repeatedly tried to influence the further development of transportation policy for disabled persons. After the CRPD: 2007 to Present In the 2001 Rights Protection Act for People with Disabilities, the Taiwan government began to apply a human rights perspective to its disability service system. But when the UN adopted the CRPD in 2006, Taiwan began to recognize that it was facing a new social reality and that its disabled population would demand that it would no longer be discriminated against, and

Title of legislation

Welfare Law for People with Disability

No change

Draft of Welfare Rights Protection Act of People with Disabilities

Welfare Rights Protection Act of People with Disabilities

Welfare Rights Protection Act of People with Disabilities

1980

1990

1995

1997

1997

Articles and chapters included or amended 26 articles

14 (same as 1997 list).

75 articles and 7 chapters

14 (same as 1995 list except that hearing 75 articles and 7 impairment is divided into hearing impairment, chapters balance impairment, and speech and vocal impairment).

6 (vision impairment; hearing, motion and balance impairment; vocal and speech impairment; movement limitation; multiple disabilities; other). Recognition of only the most severe cases. 31 articles 11 (vision impairment, hearing impairment, movement limitation, autism, chronic disease, facial disfigurements, loss of internal organ function and related disabilities, multiple disabilities, unconscious chronically persistent vegetative state, dementia, other). Relaxation of required level of severity to mild or moderate. 12 (mental health added to 1990 list) 59 articles Legislative process completed, but the final draft would take another 2 years.

Disability categoriesa

Chronicle of disability legislation in Taiwan from 1980 to 2020

Year

Table 13.2

Free access to national parks. 50% discount of fee for use of privately owned leisure facilities. Article 3: Ministry of Transportation and Communication designated as the administrative authority in charge of transportation services for people with disabilities. No changes.

Article 22: Requirement that the public transit system reserve seats for people with disabilities. Accessible facilities added.

Transport-related articles or regulations Article 20: 50% discount of public transit ticket prices.

An accessible public transit system as a right for people with disabilities in Taiwan  171

No change

No change

No change

Rights Protection Act for People with Disabilities

No change

Rights Protection Act for People with Disabilities

2001

2003

2004

2007

2011

2021

No change.

Amended all 109 articles and 9 chapters.

Amended 3 articles (26, 62, and 64-1). 16 (same as 2001 list). Amended 2 articles (51-1, 65-1). Introduced ICF scheme to replace the disability 109 articles and 9 definition system (now 8 ‘body systems’ with chapters. coding numbers). Amended all articles from 2001. The old 16 categories of disabilities fit into the Amended 57 articles. ICF scheme, with modifications.

16 (same as 2001 list).

Articles and chapters included or amended 16 (lifelong epilepsy and rare diseases added to Amended 22 articles 1997 list). (2, 3, 6, 7, 9, 11, 16, 19, 20, 36–42, 47, 50, 51, 58, 60, and 67).

Disability categoriesa

Requirement for accessible buses. Regulations and restrictions added on eligibility for discounted fees. Requirement added that public transit be accessible under CRPD guidelines.

No changes.

No changes.

Transport-related articles or regulations Reserved parking spaces required for drivers with disabilities. Regulations added for guide dogs serving people with vision impairment. Regulation of accessibility of public transit system, including long-distance and city buses, airport shuttles, airplanes, boats, and harbor craft. No changes.

Notes: All the information in this table was taken from the Law and Legislation Databank in Taiwan. Disability legislation has been amended 19 times and the name of the law has been changed 2 times. a Disability categories taken from Taiwan Disability Legislation, 1979 to present.

Title of legislation

Year

172  Research handbook on disability policy

An accessible public transit system as a right for people with disabilities in Taiwan  173 to receive effective and affordable disability services as a human right. Since Taiwan was not a member state of the UN, the only way it could catch up with the international community in its movement toward human rights-based disability policies was to pass domestic legislation. Finally in 2013, the Legislative Yuan passed a statute called The Implementation of CRPD, which ratified the CRPD and promised that the government would fully comply with it by implementing its guidelines. From 2013 to the present, the question from the transportation standpoint has been how society, the government, the politicians, and the organizations representing people with disabilities would react to the need to adopt disability policies based on the premise that accessible and affordable transportation services for disabled persons is not ‘charity’ or ‘welfare’ but a basic human right that must be honored in full. However, the way the government has approached disability policy-making after the CRPD is quite similar to how it approached transportation policy and practices before the CRPD. Although the government has been eager to fully comply with the CRPD guidelines, it has needed time to adjust and adapt its disability policies and provision of services accordingly. Nonetheless, the guidelines have already had a major impact on Taiwan’s disability system, as the Ministry of Transportation and Communication and the legislature have had to update and renew the old policies. In 2007, Taiwan began this process by incorporating the WHO International Classification of Functioning, Health, and Disability (ICF) scheme into its disability registration system. This was another major policy change as, before the adoption of the ICF scheme, adding a new category of disabilities to the officially recognized list of disabilities simply required endorsement by three legislators and passage by the Legislative Yuan. The ICF system consolidated the old 16 categories into eight ‘body systems’ that were less susceptible to political intervention. Finally, the present disability service system has a huge array of stakeholders or interest groups that cannot be overlooked by anyone wanting to change the current systems. These interest groups include organizations of people with specific disabilities, medical professionals, assistance-device producers, parent groups representing children with intellectual and developmental disabilities, and groups of homeowners and service providers. All these interest groups have influenced the content and direction of Taiwan’s disability legislation in the past as well as now.

CHALLENGES FACED BY PEOPLE WITH DISABILITIES USING THE TRANSPORTATION SYSTEM IN TAIWAN: ISSUES AND RESEARCH The disability research community in Taiwan has mimicked the government in paying too little attention to the transportation challenges faced by people with disabilities. In addition to the data collection processes described in the Method section, we searched the available databanks for published papers and unpublished graduate student theses from 2000 until now for the purpose of documenting the problems that still needed to be addressed. The theses are worth referencing because the students collected data from the disability community and used active research methods to accompany people with disabilities as they pursued their daily lives, and they experienced the same difficulties that people with disabilities encounter on a daily basis (Hsu, 2013; Lin, 2015; Pen, 2012). We also examined results from a recent

174  Research handbook on disability policy research project funded by the Taiwan government documenting the parking problems faced by people with disabilities (Chang, 2015). In preparing this chapter, the purpose of checking these studies was to verify their findings and then look for additional points we could make that go beyond the findings themselves. Our inquiries led us to select three specific issues that we thought deserved special attention in the chapter. To provide some background for these issues, in Table 13.3 below we outline the current usage of various transportation systems in Taiwan by people with disabilities. Table 13.3

Numbers of people with disabilities and their companions using each component of the Taiwan transportation system each year from 2016 to 2019

 

Railroad system High speed rail system Domestic airline Waterway system Bus system

2016 5,039,310 1,746,947 51,793 196,266 162,797,253

2017 5,371,769 1,860,453 123,995 199,324 135,804,089

2018 5,545,323 1,866,141 120,658 221,194 132,568,029

2019 5,763,389 1,875,055 128,348 253,273 138,181,882

Source: From the Second State Report on the CRPD, supplementary document on statistics (Executive Yuan, 2020, p. 26).

Issue 1: Uneven Distribution of Transit Options in Rural and Urban Areas The first major complaint we encountered was uneven distribution of transportation resources between urban and rural areas of Taiwan (Hsu, 2013). Currently, only three major cities have a Metro system: Taipei, Taichung, and Kao-hsiung. Elsewhere, people with disabilities must rely on buses, taxis, and accessible vans or scooters to go to schools, hospitals, and workplaces. If the bus does not show up as scheduled, or the bus company changes its schedule without notifying riders in advance, the riders’ daily routines will be disrupted (Lin, 2015). The National Sample Survey of Households with a Member with a Disability was conducted in 2016 and published by the Taiwan Ministry of Health and Welfare (2018). Chapter 4 of the report reveals the attitudes and experiences of people with disabilities regarding recreation, going out from home, and using the public transit system. The three major questions on the Survey ask about transportation and social participation issues. The first question asks how often the person went out from home in the previous month. In response, 91.3% of the respondents reported that they went out at least once and only 8.7% reported that they never left home. Of the 91.3%, 57.5% reported that they went out nearly every day and 9.4% reported going out once or twice in the month. The second question asks why the person goes out. For 54.8% of respondents, the reason was to perform daily routine activities (e.g., garbage dumping, walking around the neighborhood, visiting friends, shopping), for 51.0% it was a medical appointment, and for 30.0% it was exercise. The third question has two parts: it asks respondents when they go out, (a) who helps them, and (b) what types of public transit they use. As for who helps them, 45.9% asked a family member to provide a ride, 28.6% reported driving a special motorcycle, 9.8% driving a car, 8.0% taking a regular taxi, 7.4% riding a bicycle, 2.9% taking an accessible van, 2.2% driving a scooter, and 0.3% taking an accessible taxi. As for public transit, taking a public bus was reported by 17.3%, the Metro by 6.6%, rail by 1.3%, and long-distance bus by 0.8%. Overall, use of the public transit system was reported by only about 19% of the respondents.

An accessible public transit system as a right for people with disabilities in Taiwan  175 This uneven distribution of transportation services is also seen in a report from Canada. In one case, some local authorities in southern Ontario began to take action to solve the transportation problem faced by rural residents by providing specialized services and cooperating in the adaptation of the general transit system to the circumstances in their communities (McCall, 2014). The specialized services are available only for people with disabilities who are enrolled in the general service system. In rural Canada, the distance between towns or small villages is greater than in Taiwan. If only one person with disabilities lives in a remote village, for example, the authorities need to consider the cost of providing transportation for that one person. Despite the shorter distances, accessible vans are important for people with disabilities who live in rural Taiwan. Issue 2: Accessible Vans and Accessible Taxis: Price Matters The second finding is that the price of using an accessible taxi or van in Taiwan is too high for people with disabilities; for those living in rural communities, there is the additional problem of accessibility, meaning that they often must fight to reserve one of a limited number of vans (Hsu, 2013; Lin, 2015). Hsu’s (2013) research reveals that making reservations is especially difficult for those who are blind—for example, a man with limited mobility and poor vision who needs to hire an accessible van to get to work. But the research also reveals that accessible taxis are too expensive for people with disabilities in Taiwan (Hsu, 2013; Lin, 2015). As people with different types of disabilities have different transportation needs, the question arises as to which categories should be eligible to apply for the accessible van services provided by local governments. In its Second State Report on the CRPD, the Executive Yuan (2020) provided statistics on the number of accessible vans and taxis in Taiwan. The number of vans increased from 1,892 in 2016 to 2,164 in 2019, and the number of accessible taxis purchased by the taxi companies increased from 540 in 2016 to 980 in 2019. These taxis were distributed unevenly between the cities and rural areas; for instance, Taipei City had nearly 300 of them in 2019, whereas the rural county of Chai-yi had only five. Only 1.2% of people with disabilities used an accessible taxi in the last three months of 2016; the major difficulties were that it was hard to make a reservation (24.5%) and the ride was too expensive (19.2%). In fact, the price for an accessible taxi is even steeper than for a van. Table 13.4   Operation Model Fee Disability type Problem

Comparison of accessible vans and accessible taxis in Taiwan Accessible van Local government Charity/welfare Low payment Mainly for people with a mobility problem Hard to make reservations

Note: This table was created by the authors.

Accessible taxi Businesses User pay By meter, plus extra cost All people with a disability, plus elderly people Unequal usage by different income groups

176  Research handbook on disability policy This uneven distribution of public transit resources exacerbates the transportation problem faced by people with disabilities. In rural Taiwan, with no convenient Metro system and few accessible taxis and vans, the mobility right of people with disabilities has been compromised. In Table 13.4 we compare accessible vans and taxis in Taiwan on various dimensions. The table illustrates our conclusion that both options create problems for people with disabilities living in rural areas, even though the problems presented by the two types of vehicle are somewhat different. Issue 3: Which Disabilities Make One Eligible to Park in a Reserved Space? This problem is particularly serious in Taipei City because it is so urbanized. Since 1990, the government’s disability policies have waived drivers’ license fees for people with disabilities, as required by Article 7 of the Vehicle License Act. According to updated statistics, in the fiscal year 2019 the policy applied to 685,617 vehicles and exempted 6,337,656,000 NT (new Taiwan dollars) in taxes (Ministry of Finance, 2020). The legislation also made reserved parking spaces available for drivers with disabilities, but it did not specify which impairments qualify for reserved parking at hospitals, schools, parks, shopping malls, and downtown business zones. The parking management companies only check whether the driver has a disability ID card, which does not specify the type of impairment. The problem is that those with a non-mobility issue, such as a mental health condition or a hearing impairment, or non-disabled family members (because they care for the disabled member), get to occupy reserved parking spaces, leaving fewer spaces for the people who need them. To make matters worse, there have also been parking fee waivers aimed at incentivizing just those groups named above who don’t need the spaces. Not surprisingly, drivers with a mobility problem complain about these policies. So far, there has been only one research study on this issue (Chang, 2015). The researcher combined different research methods to collect the data: testimonials from drivers with a disability, observation at parking areas to check who is parking in the reserved spaces, and in-depth interviews with parking managers (Chang, 2015). The results show that most respondents who were not eligible to park in reserved spaces but did so anyway were aware of the problem and also knew that they were doing nothing unlawful. In short, the government policy of basing reserved parking eligibility solely on possession of a disability ID card has led to disputes among people with different types of impairment, but the various stakeholders are deadlocked and there is no resolution in sight.

TOWARD APPLYING A CRPD HUMAN RIGHTS MODEL OF DISABILITY TO TRANSPORTATION POLICY AND PRACTICES IN TAIWAN Over the last four decades, disability legislation has repeatedly been amended and ideas repeatedly borrowed from other societies in an effort to correct the problems with Taiwan’s disability service system. What the discussion of the above three issues highlights is that with respect to transportation services, there is a gap between policy ideas and actual practice. Authorities with good intentions have managed to enact policies with unforeseen negative consequences. Who should be punished by the system? Why is there such a large price differ-

An accessible public transit system as a right for people with disabilities in Taiwan  177 ence between accessible vans and accessible taxis? Whose disabilities should be recognized by society as eligible for reserved parking spaces? The laws aimed at applying the CRPD in Taiwan specify that the formulation of transportation policy and the maintenance of an accessible and affordable public transit system are duties of the state, which is also responsible for the enforcement of full compliance with the guidelines in Article 9 of the CRPD and the section General Comment No. 2 (United Nations, 2008). A well-designed and well-implemented public transit system is a precondition for achieving this goal.

EXAMPLES OF TRANSPORTATION PROBLEMS FACED BY DISABLED PERSONS IN TAIWAN The problems with Taiwan’s current transportation system are described in the previous section in a rather abstract way. In this section, we concentrate on two concrete examples of problems of street-level accessibility to medical clinics and what resources must be invested to improve this accessibility in contexts where the local government is the key actor. The data herein were collected from 2017 to 2020 by our research team. The First Example: Local Implementation and Commitment of Resources The first of our two examples was presented to the research team in April 2020. In the final stage of collecting data from people with disabilities and their representing associations, the team held a workshop in Hue-lien in the eastern part of Taiwan. A person from a local organization representing people with disabilities in a rural area wanted the team to make the following suggestion to the legislature: My opinion is that the following should be added to the third process dimension of the original indicator: The provision regarding the annual improvement of local street and road surfaces to make them accessible to people with disabilities should include the provision that each year the local government must increase its local budget by at least 3% to make the streets accessible.

This woman’s opinion was not accepted by the local government representative, who also attended the workshop; instead, the representative wanted the research team to support the removal of the specific requirement of a fixed rate of budget investment. Speaking to our research team, representatives of the disabled group had vigorously expressed their concern about the slow progress in making the environment accessible to people with disabilities, while the local government insisted that the fixed rate would squeeze other projects in the budget. The research team promised the group that we would bring this issue back to the central government. In the end, the already tiny 3% modification of the budget was further reduced to between 1% and 3%. This example demonstrates the intense disagreement that can be expressed by people with disabilities on the one side and local governments on the other about how much of the available resources should be invested to meet local needs and conform to the CRPD guidelines. The rate increase could be interpreted as a percentage of either the budget for road and street construction or the total annual expenses of the local government. The former is less than the latter, and if the increase were to be construed as a percentage of the total budget it would

178  Research handbook on disability policy represent a huge investment of resources that the local government did not have. As of now, the amount of money in the budget to be invested in making streets accessible to people with disabilities still has not been determined. Local disabled groups frequently discussed with the research team their daily experiences traveling on the roads and streets, and they made strong and pointed suggestions about how to improve their condition. For these groups, implementation of the CRPD guidelines is important for their daily lives, and they rely on their local governments being strongly committed to solving the problems. The above case illustrates how difficult a challenge fully complying with the CRPD guidelines has been for Taiwan. The structural problem of uneven development between modern urban areas and traditional rural farming areas has put people with disabilities in an increasingly difficult position when it comes to transportation, and they don’t have many choices. The Second Example: Unintended Discrimination or Lack of Disability Awareness? The second example came to light during one of the research team’s small face-to-face workshops. As noted above, only three cities in Taiwan have Metro systems, one of which is Kao-hsiung. A D/deaf person in the group described to the team the following personal experience involving a trip on the Kao-hsiung Metro. When he arrived at his destination, he got off and swiped his 50%-discounted Metro card at the gate. He was stopped by a Metro staff person, who wanted to know whether he had enough money for the card and whether he really had a disability. The D/deaf person could not understand what the staff person was saying, because he uses only sign language, which the staff person did not understand. Finally, the staff person took the D/deaf person to the police station. The D/deaf person was very angry because the staff person did not recognize his mistake. The D/deaf person had no visible impairments or disabilities; his limitation was an inability to communicate. The D/deaf person suggested to the research team that they communicate his experience to the government and ask them if the staff person’s behavior was an example of discrimination. The research team drew three conclusions. First, the staff person did not know how to use sign language because the company did not train him to use it; thus, the failing lay more strongly with the company than the individual staff member. Second, according to the law the D/deaf person was entitled to use the discounted ticket without disruption by a staff person checking his status. His mistake was checking the D/deaf person’s disability status rather than determining whether he had enough money for the Metro card. Third, the staff person’s behavior might have violated Article 5 of the CRPD, which addresses cases of indirect discrimination. In this case, ‘indirect discrimination’ meant that the behavior caused an extra burden, either financially or procedurally, to a person with disabilities who was attempting to attain a benefit he was entitled to under the law.

HOW SOME WESTERN COUNTRIES HAVE APPLIED THE CRPD GUIDELINES TO MODIFY THEIR TRANSPORTATION SYSTEMS Taiwan has not been alone in modifying its transportation practices. Since the passage of the CRPD, many countries have published examples of and ideas about implementing Article 9 (Amucheazi & Nwankwo, 2020; Kachaje et al., 2014; Ramanna, 2016; Stjernborg, 2019). An

An accessible public transit system as a right for people with disabilities in Taiwan  179 interesting set of analyses has been published documenting the obligations faced and positive measures taken by states that ratified the CRPD and are attempting to comply with it (Lawson, 2014). Sweden, Canada, and Britain are among the countries that have begun updating their public transit systems to conform to the CRPD guidelines (Földesi & Fördős-Hódy, 2019; Litman, 2021; Stjernborg, 2019). These efforts by different countries provide evidence that ratification of the CRPD has brought about such changes in the transportation systems as professional training of bus drivers to make them more sensitive to the needs of people with different disabilities, and the provision of accessible public transit to people with disabilities who live in rural areas. Under ‘Issue 1’ above, we described an example of a successful policy in Canada aimed at improving access in rural areas of Ontario (McCall, 2014). Recently, Sweden and Britain have published reports or articles on improving their public transit systems to help assure that people with disabilities have an accessible and comfortable riding experience (Bezyak et al., 2020; Pearson, 2018). For example, wheelchair users in London have been struggling to decide what is the most suitable way to ride on public buses and how much space the buses should reserve for wheelchair seats (Pearson, 2018). The most recent of these published reports indicates that Sweden still needs to readjust its transportation system to meet the requirements under Article 9, such as by providing professional training to bus drivers and by reviewing and then updating all its current transportation practices from a human rights perspective (Stjernborg, 2019). In addition, discussion of the economic effect of accessible transportation on people with disabilities has recently begun to draw attention from researchers, especially in middle- or low-income countries (Kett, Cole, & Turner, 2020). The discussions have focused on providing special services or adopting a more inclusive approach to satisfy the needs of disabled persons (Rebstock, 2017). These discussions or debates still have not been settled, but one particular trend in the thinking is clear—accessible public transit is vital for people with disabilities if they are to have the same social status as those without disabilities, and it is the responsibility of the state to carry the burden of implementing the CRPD guidelines to assure their rights.

CONCLUSION: THE EVOLUTION OF TRANSPORTATION FOR PEOPLE WITH DISABILITIES IN TAIWAN—FROM A PERSONAL PROBLEM TO A PUBLIC ISSUE TO A COMPLETE GOVERNMENT RESPONSIBILITY In this chapter, we applied the CRPD human rights model of disability to evaluate the transportation policies of Taiwan and assess how people with disabilities experience the current system. The major challenge faced by the Taiwan government, which has the responsibility to protect the rights of people with disabilities, is how to modify its current disability policies to bring them into compliance with the CRPD guidelines. Before ratifying the CRPD, Taiwan had established a complicated disability policy and service system through multiple pieces of legislation. Therefore, the challenge it faces today is not from the CRPD guidelines themselves but from the current administration’s perception of the government’s role under the CRPD. The cases presented in the last section illustrate this perception and preoccupation.

180  Research handbook on disability policy The first disability legislation in Taiwan was passed before Taiwan gradually became an open and democratic society. Back then, disability legislation functioned as a showcase to convince the world that Taiwan cared about people with disabilities, but the service systems were accessible to only a handful of people whose impairments fit the government’s strict criteria for a disability. Therefore, the first decade of disability legislation left the problem nearly untouched. Only when Taiwan released the Martial Law in 1997 did meaningful changes begin to appear. From 1990 onward, as the political system in Taiwan was becoming more open and democratic, and the initiation of regular local and national elections was motivating local politicians to appear more open and democratic to their constituents, the Legislative Yuan became the main battleground for all the politicians and their political parties. The major revisions of disability legislation that began to appear in the 1990s proved the reality of this trend. Public advocates for people with disabilities and their organizations participated in the revision process; from the beginning, they were allowed to express their opinions on the content of legislation to the Legislative Yuan. Examples of policies that their pressure helped move the Yuan to enact were the tax exemption of drivers’ license fees for people with disabilities and expansion of exemptions to family members (Legislative Yuan, 1991). These changes made the provision of transportation and related services no longer the burden of the immediate family, but rather the obligation of state and local governments. The first case described in the last section demonstrates local government’s commitment (or lack thereof) to redistribute resources to improve the condition of roads and streets at the community level. The second case illustrates the need of Taiwanese society to rethink what discrimination means. Such cases remind us that a sufficient supply of services, as well as front-line workers being professionally trained to be sensitive to the experience of disability, are needed to fulfill the rights of people with disabilities that have not been satisfied within the current system. The CRPD grew out of the disability movements in Global North countries and from the historic struggle for individual rights (Francis, 2018). However, Global North countries have followed different paths than Eastern Asian countries in trying to win rights for people with disabilities. Taiwan is unique among Eastern Asian countries in that before the CRPD it had a disability system that combined a charity model with a quasi-rights model, rather than a genuine rights model, to address the challenges faced by people with disabilities. What characterizes a charity model is the reduction of the financial burden of people with disabilities through discounts, exemptions, and totally free services. This approach took hold in the 1980s and continues to this day. The quasi-rights model was not much different in practice than the charity model. The idea was that because they are ‘citizens’, people with disabilities have the right to receive ‘welfare’ as compensation for their afflictions. The greater the welfare benefit, the more their rights are protected by society. This perception by the Taiwanese government of the situation for disabled persons led it to adopt policies that combined charity and welfare rather than policies aimed totally at providing and protecting human rights. Thus, the current policies and practices do not treat people with disabilities as having the same status as other citizens, but rather as people who need special services. This attitude from both sides, the government and people with disabilities themselves, has created a human rights dilemma, which is hidden behind all the discussions and debates about implementing the CRPD guidelines.

An accessible public transit system as a right for people with disabilities in Taiwan  181 A transportation system that fully meets the rights and needs of people with disability is a primary factor affecting their social participation, and Taiwanese people with disability see this clearly as their right. To fulfill both rights expectations and obligations, states such as Taiwan must provide accessible transportation as a fundamental component of government service, protected by legislation, adequately resourced, and responsive to the UNCRPD.

REFERENCES Amucheazi, C., & Nwankwo, C. (2020). Accessibility to infrastructure and disability rights in Nigeria: An analysis of the potential of the Discrimination against Persons with Disability (Prohibition) Act 2018. Commonwealth Law Bulletin, 46(4), 689–710. https://doi.org/10.1080/03050718.2020.1781674 ​ ​ ​ ​ ​ ​ ​ Bezyak, J. L., Sabella, S., Hammel, J., McDonald, K., Jones, R. A., & Barton, D. J. (2020). Community participation and public transportation barriers experienced by people with disabilities. Journal of Disability and Rehabilitation, 42(23), 3275–3283. https://doi.org/10.1080/09638288.2019.1590469 ​ ​ ​ ​ ​ ​ ​ Broderick, A. (2020). Of rights and obligations: The birth of accessibility. The International Journal of Human Rights, 24(4), 393–413. https://doi.org/10.1080/13642987.2019.1634556 ​ ​ ​ ​ ​ ​ ​ Broderick, A., & Watson, P. (2020). EU disability non-discrimination law. In D. Ferri & A. Broderick (Eds.), Research handbook on EU disability law (pp. 121–145). Edward Elgar Publishing. Chang, H.-H. (2015). The politics of disability classification and redistribution justice: A case study of accessible parking in Greater Taipei area. Social Work & Social Policy, 19(1), 91–138 [in Chinese]. https://sociology.ntpu.edu.tw/uploadFiles/file/20151124/20151124154830_53314.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Degener, T. (2016). Disability in a human rights context. Laws, 5(3), 35. https://doi.org/10.3390/ ​ ​ ​ ​ ​ laws5030035 European Union. (2018). EU-OHCHR bridging the gap I: Human rights indicators for the Convention on the Rights of Persons with Disabilities in support of a disability inclusive 2030 agenda for sustainable development. https://bridgingthegap-project.eu/crpd-indicators/#HumanRights ​ ​ ​ ​ ​ ​ Executive Yuan. (2020). Implementation of the CRPD Second Report Submitted under Article 35 of the Convention (Taiwan). https://www.roc-taiwan.org/uploads/sites/76/2021/08/Implementation-of-the ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -CRPD-Second-Report-Submitted-under-Article-35-of-the-Convention.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Fina, V. D. (2017). Article 3 [general principles]. In V. D. Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 119–136). Springer. Földesi, E., & Fördős-Hódy, E. (2019). Mainstreaming the needs of people with disabilities in transport research. In B. Müller & G. Meyer (Eds.), Towards user-centric transport in Europe (pp. 65–73). Springer. Francis, L. (2018). Understanding disability civil rights non-categorically: ‘The minority body’ and the Americans with Disabilities Act. Philosophical Studies, 175(5), 1135–1149. https://doi.org/10.1007/ ​ ​ ​ ​ ​ s11098-018-1067-x ​ ​ ​ Hsu, S.-W. (2013). The experiences of people with disabilities going out and the difficulties they encounter: A study of Chai-yi county [Unpublished master’s thesis]. National Chung Cheng University. Kachaje, R., Dube, K., MacLachlan, M., & Mji, G. (2014). The African Network for Evidence-to-Action on Disability: A role player in the realisation of the UNCRPD in Africa. African Journal of Disability, 3(2), 1–5. https://doi.org/ ​ ​ ​ 10.4102/ajod.v3i2.86 Kett, M., Cole, E., & Turner, J. (2020). Disability, mobility and transport in low- and middle-income countries: A thematic review. Sustainability, 12(2), 1–18. https://doi.org/10.3390/su12020589 ​ ​ ​ ​ ​ Lawson, A. (2014). Accessibility obligations in the UN Convention on the Rights of Persons with Disabilities: Nyusti & Takács v Hungary. South African Journal on Human Rights, 30(2), 380–392. Legislative Yuan. (1979). Bulletin of the Legislative Yuan (Vol. 68). Taipei, Taiwan. https://Law.moj .gov.tw ​ Legislative Yuan. (1991). Bulletin of the Legislative Yuan (Vol. 76). Taipei, Taiwan. https://Law.moj .gov.tw ​

182  Research handbook on disability policy Liisberg, M. V. (2015). Accessibility of services and discrimination: Concentricity, consequence, and the concept of anticipatory reasonable adjustment. International Journal of Discrimination and the Law, 15(1–2), 123–144. https://doi.org/10.1177/1358229114558545 ​ ​ ​ ​ ​ Lin, M.-Y. (2015). Let us see how elderly grandpop and grandmom go out: The barrier elderly people face and their choice and strategy: Case of Kao-hsiung City [Unpublished master’s thesis]. National Chung Cheng University. Litman, T. (2021). Evaluating accessibility for transport planning. Victoria Transport Policy Institute. https://www.vtpi.org/access.pdf ​ ​ ​ ​ ​ Lord, J. E. (2010, October 7). Accessibility and human rights fusion in the CRPD: Assessing the scope and content of the accessibility principle and duty under the CRPD. Presentation for the General Day of Discussion on Accessibility, United Nations CRPD Committee. https://studylib.net/doc/7877627/ accessibility-and-human-rights-fusion-in-the-crpd--assess... ​ ​ ​ ​ ​ ​ ​ ​​ Maliszewska-Nienartowicz, J. (2020). Accessibility for persons with disabilities as an important element of economic and social development: The European Union case [Special issue]. European Research Studies Journal, 23(1), 1084–1099. https://www.um.edu.mt/library/oar/handle/123456789/78081 ​ ​ ​ ​ ​ ​ ​ ​ ​ McCall, K. (2014). Emerging trends in specialized transport in rural communities: Exposing the myths. https://www.karlencommunications.com/adobe/Emerging%20Trends%20in%20Specialized ​ ​​ ​ ​ ​ ​ ​ ​ ​ ​ %20TransportMcCall2014.pdf ​ ​ ​ Ministry of Finance. (2020). Annual finance statistics of 2019. Taipei, Taiwan. https://mof.gov.tw ​ ​ ​ Ministry of Health and Welfare. (2018). National sample survey of households with a member with a disability. Taipei, Taiwan. https://www.mohw.gov.tw/dl-70516-15cf0b84-9f71-4d1c-9954 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -062544fbdf3d.html, https://dep.mohw.gov.tw/DOS/lp-5096-113-1-20.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Pearson, A. (2018). The debate about wheelchair spaces on buses goes ‘round and round’: Access to public transport for people with disabilities as a human right. Northern Ireland Legal Quarterly, 69(1), 1–17. https://doi.org/10.53386/nilq.v69i1.68 ​ ​ ​ ​ ​ ​ ​ Pen, P.-C. (2012). The practice and limitations of the social model in the UK: A study of the transportation program for the elderly and people with disabilities in the Leeds area. [Unpublished doctoral thesis]. National Chung Cheng University. Ramanna, P. (2016). Accessibility of persons with disabilities for barrier-free environment issues and challenges in India. Second International Conference on Digital Technologies and Innovation in Science and Society. http://srishtiinternational.org/wp-content/uploads/2017/08/2nd-CONFERENCE ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ [email protected] ​ ​ Rebstock, M. (2017). Economic benefits of improved accessibility to transport systems and the role of transport in fostering tourism for all. Discussion paper presented at 2017 International Transport Forum. https://www.itf-oecd.org/sites/default/files/docs/improved-accessibility-fostering-tourism-for ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -all.pdf ​ Stjernborg, V. (2019). Accessibility for all in public transport and the overlooked (social) dimension: A case study of Stockholm. Sustainabilty, 11(18), 4902. https://doi.org/10.3390/su11184902 ​ ​ ​ ​ ​ United Nations. (2006, December 6). Convention on the Rights of Persons with Disabililities and optional protocol. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -persons-with-disabilities.html. ​ ​ ​ United Nations. (2008). General Comments by CRPD Committee, No. 2. Velho, R., Holloway, C., Symonds, A., & Balmer, B. (2016). The effect of transport accessibility on the social inclusion of wheelchair users: A mixed method analysis. Social Inclusion, 4(3), 24–35. https:// doi.org/10.17645/si.v4i3.484 ​ ​ ​ ​ ​ ​

14. Narrative 4: The effect of disability policy on lives Chien-Ju Chou

Chien-Ju Chou is a Taiwanese female disabled activist and the founding director of Taiwan Disabled Women’s Alliance for Equal Rights. Her narrative was translated into English by Jun-jie Lin. **** I am a woman with disabilities. My life has been changeable and unstable due to Spinal Muscular Atrophy (SMA). The social environments and organizations in Taiwan, where I live, have been progressed because the disability rights movement has continuously advocated for the rights of people with disabilities. The improvement of disability rights has enriched my life. Disability support services in Taiwan, however, still require more improvement.

SPECIAL EDUCATION AND RIGHT TO EDUCATION FOR PEOPLE WITH DISABILITIES In 1993, when I was studying in elementary school, my mother had to carry me to the class on the second floor because there was no elevator in the building. After my mother argued with the school, the school authority changed my class to the first floor. However, I still lost many learning opportunities because specialized classes and facilities were built on the upper floors where I could not get to. By the time I reached the fifth grade, the Taiwanese government started to promote the policy of barrier-free environments in schools, requiring schools to build elevators for people with disabilities. Thus, I finally had a chance to join the music class, computer class, and library, exploring various pieces of knowledge. Nevertheless, my body condition changed because of SMA, and I needed more assistance than before. When the Taiwanese government amended the law to allow residents to hire foreign care workers, my family employed a foreign care worker to assist me daily and in school. With the support from the foreign care worker, I no longer needed to rely on the support from my mom. I could start to arrange and explore my life independently. Nevertheless, the cost of hiring foreign care work was borne by my family and it became a heavy financial burden for the family. I started to receive formal special education resources when I studied in senior high school. Teachers in the special class in school understood my individual needs. They developed Individualized Education Programs at the beginning of every semester, dealt with problems of class accessibility, and discussed with me how to resolve barriers in and out of school. Furthermore, we also discussed how to resolve related problems when I study in a university in the future. Then, I entered a university in Taipei. Before I attended, the Assistive Device Center of the Taiwanese Ministry of Education supplied an electronic wheelchair, allowing me to 183

184  Research handbook on disability policy move freely on the campus. Furthermore, the school had a meeting concerning individualized supportive plans for students with disabilities and proceeded to improve the conditions of accessible restrooms in the school, freeing me from the problems of going to the restroom. Due to the accessibility and convenience of Taipei’s Mass Rapid Transit system, I could participate in student clubs outside school, get internships in enterprises, and join social groups organized by people with disabilities. However, since there was no subway near the campus and accessible buses were not available in Taipei, I could only commute to school and home by taking rehabilitation buses, a special transportation service for people with disabilities in Taiwan. Moreover, the inconvenience of transportation limited my motivation to participate in school club activities and study groups.

MY FUTURE OF INDEPENDENT LIFE? After I graduated from university, I chose to work in a public university. According to the Person with Disabilities Rights Protection Act in Taiwan, public sectors must provide employment quotas and accessible environments. Therefore, working in the public sector could prevent me from encountering problems like having no entrance to the building and having no accessible restroom in the office. The first wage a person earns after entering the workplace represents her independence. However, I noticed that the whole wage I earned in my job almost equaled the payment of employing a foreign care worker. Thus, I still depended on my parents to pay for basic living expenses. Only by doing so can I defray the expense of social life. After participating in many activities held by the NewVitality Independent Living Association, Taipei, I understood independent living notions and began to employ a personal assistance service. Moreover, since I joined in an empowering course, ‘Be myself,’ that was held by The League for Persons with Disabilities, Republic of China, to promote the implementation of the Convention on the Rights of Persons with Disabilities, I realized that individual impairment is not a tragedy, but instead how the social environment and institutions influence a person’s participation in society. By then, I began to think about the relationship between government policies and people with disabilities. This reflection encouraged me to attend a graduate school to investigate disability studies and participate in advocacy. Although the Taiwanese government provides services to people with disabilities, the services are not enough to support persons with high support needs to live independent lives. The Taiwanese government’s services are far fewer than the requirements of people with disabilities in terms of housing, assistive devices, economic safety, personal assistant services, and so on. In recent years, challenged by disability rights organizations, the government has established an independent living support service for people with disabilities. I can receive two to three hours of care from the Long-Term Care (LTC) service through one system and two hours of assistance service from the Independent Living Service. However, I usually need assistance about 16 to 18 hours per day to fulfill my needs in daily life. In other words, the amount of service the Taiwanese government supplies is far less than I need, so I cannot have a truly autonomous and flexible life. Furthermore, the LTC service emphasizes ‘providing care’ rather than ‘developing autonomy’ to people with disabilities, so the service has many limitations. To ensure the autonomy that I need so that I can arrange my life willingly, including going to work, shopping, going to the restroom, etc., my family employ

Narrative 4: The effect of disability policy on lives  185 foreign care workers to assist in my life. However, the government refused my application for any personal assistance because I have personally employed an additional foreign care worker. Although the Taiwanese government has established a respite service in recent years, this service can only supply a few hours. In fact, it is even difficult for the main carer to rest for a full day in a month. As my body condition changes, I cannot afford a full-time job. My economic income is also affected. At the same time, facing the fact that my parents are becoming older, whether my family can afford the expense of employing care workers to assist in my life becomes my main concern. How long can I keep the quality of the life I value right now into the future? Furthermore, my friends with disabilities can only apply for public services because of the shortage of family support. However, their lives are segmented by incomplete services due to the limited hours. Therefore, they cannot arrange independent lives for themselves.

PERSISTING TO ADVOCATE RIGHTS AND CHANGE LIVES Besides my concern for my independent life, as my age and social role increase, I also encountered another new issue. In Taiwan, during the Chinese New Year, elder relatives always ask young people: ‘Where do you work?’ ‘Do you have a partner?’ ‘When would you want to get married?’ However, while I was asked these questions, elder relatives intentionally skipped asking whether I had a partner or got married. This scenario has not only happened to me. Indeed, my many female friends with disabilities have the same experience. In Taiwan, women are expected to become caregivers and take care of partners’ parents, husbands, and children. However, females with disabilities are not recognized as caregivers. Thus, my friends and I further discussed the intersectionality of females and disabilities and particular predicaments faced by women with disabilities in terms of obstetrics and gynecology and menstrual rights. Furthermore, we, a group of females with disabilities and professional expertise, founded the Taiwan Disabled Women’s Alliance for Equal Rights to advocate the issues of reproductive health and parenting in females with disabilities. From graduate school, to advocacy, to communication with the Taiwanese government, I understand the relationship between the historical context of Taiwan’s disability social movement and the changes in my surrounding environments and institutions. This experience encourages me to believe: only when people with disabilities challenge and advocate persistently to change government policies can the rights and lives of people with disabilities be protected.

15. The EU framework of people with disabilities’ rights – an intertemporal equilibrium between regulatory and policy paradigms Gabriel Amitsis and Fotini Marini

INTRODUCTION A key research question within the broader framework of the European Union (EU) Social Policy Agenda is focused on the legal impact of EU initiatives on the living standards of European citizens, particularly those with increased needs or faced with social and economic challenges. This question shall be addressed in our chapter concerning the specific group of people with disabilities, who comprise almost 20% of the EU population (447.7 million in 2020). Despite the lack of disaggregated and comparative national census data about people with disabilities living in the EU, the analysis of European Union Statistics on Income and Living Conditions and European Union Labour Force Survey available data shows that approximately 87 million people have some form of disability in the EU (Grammenos & Priestley, 2020). It is also clear that people with disabilities still face considerable barriers accessing healthcare, education, employment and recreation activities as well as participating in political life (European Disability Forum, 2021). The employment rate of those aged 20–64 stands at 50.6%, compared to 74.8% for people without disabilities (Lecerf, 2020). In addition, 28.7% of people with disabilities are at risk of poverty or social exclusion compared to 19.2% of the general population (Hammersley, 2020). This means that poverty and social exclusion are a reality for just under 29 million people with some form of disability in the EU. Finally, over 50% of people with disabilities reported they were personally discriminated against in 2019 (European Commission, 2019). Taking the challenging balance between the nexus of international versus national law and policy as a starting point, this chapter uses legal and social policy approaches to identify whether and how the current EU framework: (a) creates fundamental rights for people with disabilities; and (b) supports the access of people with disabilities to fundamental rights. The first question will be explored through the institutional analysis of the EU regulatory framework based on primary law (such as the Treaties and the Charter of Fundamental Rights of the European Union) and secondary binding hard law (such as Regulations and Directives). The second question will be scrutinized through discourse analysis and the social policy analysis of EU secondary non-binding soft law methods (including Recommendations, Communications and Resolutions) and supporting tools (including Strategies and Action Plans).

186

The EU framework of people with disabilities’ rights  187

1.

THE EUROPEAN UNION DISABILITY RIGHTS DISCOURSE

Disability policies within the European Union (EU) framework1 are in principle a responsibility of the Member States2 due to the current structure of competences3 of the EU (Broderick & Ferri, 2019), as laid down in the Treaty on the Functioning of the European Union (TFEU). In this national-driven context, governments have developed different agendas of disability policies (Tschanz & Staub, 2017), based on the traditional classification between social protection, labour-market integration and the guarantee of social and civil rights (Van Oorschot & Hvinden, 2001). However, the EU has a strong impact on the situation of people with disabilities in Europe,4 which will be discussed using discourse analysis as a conceptual and research tool (Lynggaard, 2019). This method will identify the existence of disability agendas that occur somewhere above the level of a single word, phrase, sentence, text or conversation between EU bodies and national governments. Put simply, this method allows us to highlight broader social effects and relationships between EU and national disability law than those which can be derived from discourse alone. In this context, we will analyse current EU disability law and policy in the light of the multi-level disability rights discourse, which includes interrelated sections of transnational law, policy, disability and human rights (Lawson & Priestley, 2013). Under this discourse, the EU disability rights framework, as regulated particularly by EU Disability Law (Ferri & Broderick, 2020; Machado & de Lorenzo, 1997), is part of the broader EU context to protect the rights and freedoms of European citizens (Lawson & Gooding, 2005) through a concerted set of legal (binding and non-binding), policy and funding machineries. The EU is committed to supporting democracy and human rights in accordance with its founding principles of liberty, democracy and respect for human rights, fundamental freedoms and the rule of law. It also seeks to mainstream human rights concerns into all of its policies and programmes and has different human rights policy instruments for specific actions including financing specific projects through its funding instruments. The key feature of the EU rights framework is its strong consolidation by primary EU law, as specified particularly in Articles 2, 3 and 6 of the Treaty on European Union (TEU), which states that: 1. The Union recognizes the rights, freedoms and principles set out in the Charter of Fundamental Rights of the European Union of 7 December 2000, as adapted at Strasbourg, on 12 December 2007, which shall have the same legal value as the Treaties. The provisions of the Charter shall not extend in any way the competences of the Union as defined in the Treaties. The rights, freedoms and principles in the Charter shall be interpreted in accordance with the general provisions in Title VII of the Charter governing its interpretation and application and with due regard to the explanations referred to in the Charter, that set out the sources of those provisions. 2. The Union shall accede to the European Convention for the Protection of Human Rights and Fundamental Freedoms. Such accession shall not affect the Union’s competences as defined in the Treaties. 3. Fundamental rights, as guaranteed by the European Convention for the Protection of Human Rights and Fundamental Freedoms and as they result from the constitutional traditions common to the Member States, shall constitute general principles of the Union’s law.

The EU disability rights discourse is not limited to only individual human rights but also encompasses political rights directly enforceable in the courts, both horizontally (between

188  Research handbook on disability policy individuals) and vertically (between the individual and the state), often classified under the EU citizenship regime5 which guarantees for all EU citizens: 1. the right to move and reside freely within the territory of the Member States (Article 21 of the TFEU); 2. the right to vote and to stand as a candidate in elections to the European Parliament and in municipal elections (Article 22(1) of the TFEU) in the Member State in which they reside, under the same conditions as nationals of that State; 3. the right to diplomatic protection in the territory of a third country (non-EU state) by the diplomatic or consular authorities of another Member State, if their own country does not have diplomatic representation there, to the same extent as that provided for nationals of that Member State; 4. the right to petition the European Parliament and the right to apply to the Ombudsman (both Article 24 of the TFEU) appointed by the European Parliament concerning instances of maladministration in the activities of the EU institutions or bodies; 5. the right to write to any EU institution or body in one of the languages of the Member States and to receive a response in the same language (Article 24(4) of the TFEU); 6. the right to access European Parliament, Council and Commission documents, subject to certain conditions (Article 15(3) of the TFEU). The EU disability rights discourse also concerns the protection of social and economic rights (Egan & Chadwick, 2021) of people with disabilities (Blanck & Flynn, 2017), as laid down particularly in the Charter of Fundamental Rights of the European Union (EUCFR) and the European Pillar of Social Rights. In this context, the EU disability rights framework includes all legal (binding and non-binding) mechanisms created6 or applied7 by EU bodies to: (i) promote specific social, political and economic aims in favour of people with disabilities; and (ii) address risks and needs related to disability (Broderick & Ferri, 2019). It is a multi-level institutional fabric developed during the design and implementation of different policy transnational agendas and influenced by the political placement of disability within the broader EU scope of action in critical sectors such as social protection, labour-market integration and civil rights policy (Maschke, 2004).

2.

THE REGULATORY FRAMEWORK OF DISABILITY RIGHTS

The regulation of disability rights in EU law is achieved by both primary and secondary hard law instruments that share a common principle – their binding effect on EU bodies and Member States. There are strong criticisms about the limited scope and impact of these instruments on the real lives of people with disabilities (Sainsbury et al., 2017). However, their implementation so far has created a new international institutional agenda (Lecerf, 2017) that was not the case during the initiatives of the European Economic Community (EEC),8 where no serious reference to disability rights vocabulary and practice was evidenced (Priestley, 2007; Waldschmidt, 2009).

The EU framework of people with disabilities’ rights  189 2.1

The Anti-discrimination Principle

(a) The first EU initiative for the formulation of an integrated disability rights discourse does not concern the context of rights itself but the establishment of a fundamental principle that might improve the universal access of people with disabilities to rights. With immense pressure from non-governmental organizations and associations, the issue of disability was written into the 1997 Treaty of Amsterdam.9 Article 13 stipulates that: 1. Without prejudice to the other provisions of this Treaty and within the limits of the powers conferred by it upon the Community, the Council, acting unanimously on a proposal from the Commission and after consulting the European Parliament, may take appropriate action to combat discrimination based on sex, racial or ethnic origin, religion or belief, disability, age or sexual orientation. 2. By way of derogation from paragraph 1, when the Council adopts Community incentive measures, excluding any harmonization of the laws and regulations of the Member States, to support action taken by the Member States in order to contribute to the achievement of the objectives referred to in paragraph 1, it shall act in accordance with the procedure referred to in Article 251. (b) The same principle was codified within the text of the Charter of Fundamental Rights of the European Union.10 Article 21 stipulates that: 1. Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited. 2. Within the scope of application of the Treaties and without prejudice to any of their specific provisions, any discrimination on grounds of nationality shall be prohibited. (c) The anti-discrimination principle was further consolidated by a secondary hard law instrument in the form of the Council Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment and occupation.11 The purpose of this Directive is to lay down the institutional framework for combating discrimination on the grounds of religion or belief, disability, age or sexual orientation as regards employment and occupation, with a view to putting into effect in the Member States the principle of equal treatment. Under this Directive, EU citizens and residents with disabilities are protected against discrimination when they work or have work-related training, especially regarding pay and working conditions, and membership in organizations of workers or employers (Waddington & Lawson, 2009). For example, the employer is obliged to provide reasonable accommodation (Ferri & Lawson, 2016). This means that the employer must take measures to adapt the workplace to an employee with disabilities, such as removing physical barriers by installing ramps, facilitating the access of visually impaired employees to information technologies, or altering working times to accommodate the needs of workers with disabilities. Failure to provide reasonable accommodation constitutes discrimination against the disabled employee in question. The implementation of this Directive is monitored by the European Commission and its legal interpretation is subject to the European Court of Justice (ECJ) rulings12 which have developed in many cases (Connor, 2010; Waddington, 2015) a disability-friendly relevant case law.13

190  Research handbook on disability policy 2.2

The Introduction of Selective Rights

The second EU initiative for the formulation of an integrated disability rights discourse concerns the introduction of a selective framework that acknowledges the need for specific positive policies and measures. Article 26 of the Charter of Fundamental Rights of the European Union14 stipulates that ‘[t]he Union recognizes and respects the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community’.15 This clause opened the way for a multi-disciplinary debate on the socially inclusive aspects of disability policies in Europe, strongly influenced by the broader paradigm of the European Social Inclusion Strategy (Amitsis, 2004). Despite its strong social values-based approach to inclusive disability actions, Article 26 does not guarantee access to a new right, as validated by relevant ECJ rulings.16 Article 26 should be read in conjunction with Article 30, which re-affirms the institutional codification of disability (under the term ‘dependency’) as a specific social insurance risk and social welfare need: 1. The Union recognizes and respects the entitlement to social security benefits and social services providing protection in cases such as maternity, illness, industrial accidents, dependency or old age, and in the case of loss of employment, in accordance with the rules laid down by Union law and national laws and practices.17 2. Everyone residing and moving legally within the European Union is entitled to social security benefits and social advantages in accordance with Union law and national laws and practices. 3. In order to combat social exclusion and poverty, the Union recognizes and respects the right to social and housing assistance so as to ensure a decent existence for all those who lack sufficient resources, in accordance with the rules laid down by Union law and national laws and practices. The use of the dependency (instead of disability) terminology in paragraph 1 does not create any effect particularly for Member States without any general legal framework for the definition of disability (Lecerf, 2017, p. 7). However, it reflects a shift from a human rights-based approach to an impact-focused disability paradigm, subject to open interpretations whether it denotes a stigmatized disadvantage, be it economic, social or physical. The distinction between dependency and disability in EU law is a policy issue strongly influenced by the traditional medical model and the broader social model of disability (Roulstone & Prideaux, 2012): 1. The medical model reflects the dependency approach. It focuses on the person’s medical condition – illness, injury or impairments – which is the direct cause of their disability and may have an impact on their quality of life. A medical intervention may be necessary to diagnose and treat the disability and/or to maintain or increase the person’s abilities. 2. The social model reflects the disability approach, as it focuses on the barriers created by society. Those may be physical or social restrictions which prevent the abilities – physical, social or professional – which each individual needs to thrive.

The EU framework of people with disabilities’ rights  191 2.3

Access to the Universal Rights Regime

The third EU initiative for the formulation of an integrated disability rights discourse concerns the access of people with disabilities to the universal rights regime, the UN Convention on the Rights of Persons with Disabilities (UNCRPD).18 This is the first international human rights Convention ratified by the EU,19 which entered into force on 21 January 2011 in accordance with Council Decision 2010/48/EC of 26 November 2009. The UNCRPD reflects a human rights-based paradigm of disability (Degener, 2017); it forms an integral part of EU law, and in hierarchical terms it is inferior to primary law but superior to secondary law.20 The Council Decision concerning the conclusion by the EU of the UNCRPD21 declared the extent of EU competences with respect to the matters governed by the Convention and a secondary legislation was identified and listed in a declaration in the Annex to illustrate the extent of the area of EU competence. The Decision explains that the scope and the exercise of EU competence are, by their nature, subject to continuous development and that the EU will complete or amend the declaration, if necessary, in accordance with Article 44(1) of the UNCRPD. EU bodies used the UNCRPD during the 2010s as a monitoring instrument of both EU (Anglmayer, 2020; Degener, 2020) and national disability policies. The European Commission has provided the UN Committee on the rights of persons with disabilities: 1. the first Report on the EU’s application of the Convention (June 2014); 2. a response to UN review of the EU’s implementation of the Convention (June 2015); 3. a response to the UN Committee’s more urgent recommendations, and follow-up on the adoption of the European Accessibility Act, the Commission’s withdrawal from the EU Framework endorsed by the Council in 2012, and the update of the list of EU legal acts related to disability (January 2017).

3.

THE POLICY FRAMEWORK OF DISABILITY RIGHTS

The development of disability rights in EU law is promoted also by secondary soft law instruments without any binding effect on EU bodies and Member States. These instruments not only provide policy guidance to Member States and influence cultural values (Waldschmidt, 2009), but they also may legitimize the adoption and revision of secondary hard law instruments on the initiative of the European Commission. 3.1

The Community Charter of the Fundamental Social Rights of Workers

The first initiative for the formulation of a disability rights policy framework goes back to the years of the European Economic Community (EEC), under the form of the Community Charter of the Fundamental Social Rights of Workers.22 The Charter was adopted on 9 December 1989 in accordance with the Preamble of the Treaty establishing the European Economic Community by a Declaration of all Member States, with the exception of the United Kingdom (UK). The Charter shaped the development of the European Social Model during the 1990s through the implementation of a Social Action Programme,23 which produced a number of binding and non-binding instruments in the fields of working conditions, employment and social policy.

192  Research handbook on disability policy Article 26 of the Charter stipulates that: All disabled persons, whatever the origin and nature of their disablement, must be entitled to additional concrete measures aimed at improving their social and professional integration. These measures must concern, in particular, according to the capacities of the beneficiaries, vocational training, ergonomics, accessibility, mobility, means of transport and housing.

The legal status of the Charter is that of a mere political declaration as stated in its Preamble, since, due to the opposition of the UK Government, the Charter could not be integrated into the EC Treaty in 1989. Nonetheless, the Preamble to the Treaty on European Union confirms the Member States’ ‘attachment to fundamental social rights as defined in the 1989 Community Charter’. Article 151 of the Social Charter of the TFEU states that ‘[t]he Union and the Member States [have] in mind fundamental social rights such as those set out… in the 1989 Community Charter of the Fundamental Social Rights of Workers…’ As such, the Charter may be used by the European Court of Justice as an interpretative guide in litigation concerned with the protection of social rights of people with disabilities. Such litigation could take the form of legal action by way of preliminary references by national courts (Article 267 TFEU) challenging Member States’ implementation of Union law, which arguably violates the fundamental social rights of workers in the Charter. 3.2

The First European Disability Strategy

The first European Disability Strategy was only adopted in 1996 by the European Commission under a non-binding Communication entitled Equality of Opportunity for People with Disabilities – A New Community Disability Strategy 1996.24 It was based, above all, on the UN’s Standard Rules on the Equalization of Opportunities for Persons with Disabilities of 1993,25 and introduced a human rights-based paradigm to disability as laid down in section 7 of the introductory text: This Communication aims at giving a renewed impetus towards the rights-based equal opportunities approach to disability, both in the Member States, and at the level of the Community. The common task is one of valuing, and making space for human diversity. This is everyone’s business in a People’s Europe that values fairness as well as efficiency.

The policy impact of this Communication was very strong, given that the European Commission declared for the first time that it is essential for the European Community to clarify and confirm its overall disability strategy, the core of which should be a shared commitment by all Member States to promote equal opportunities, to eliminate discrimination in this field and to recognize the rights of people with disabilities. To this end, the Commission proposed the adoption of a Resolution on Equality of Opportunity by the Council and the Representatives of the Governments of the Member States meeting within the Council. This Resolution was finally adopted on 20 December 199626 and called on Member States: ● To consider if relevant national policies take into account, in particular, the following orientations: ● empowering people with disabilities for participation in society, including severely disabled people, while paying due attention to the needs and interests of their families

The EU framework of people with disabilities’ rights  193 and carers; ● mainstreaming the disability perspective into all relevant sectors of policy formulation; ● enabling people with disabilities to participate fully in society by removing barriers; ● nurturing public opinion to be receptive to the abilities of people with disabilities and towards strategies based on equal opportunities. ● To promote the involvement of representatives of people with disabilities in the implementation and follow-up of relevant policies and actions in their favour. The Resolution has been used as a reference framework for the structured exchange of useful information between the Member States; as a platform to stimulate the clarification of common goals and the identification of best practices; and as a guide for the development and assessment of appropriate measures within the Member States and the Community’s own respective spheres of action. 3.3

The Second European Disability Strategy

The second European Disability Strategy was adopted in 2000 by the European Commission under a non-binding Communication entitled Towards a Barrier-Free Europe for People with Disabilities.27 This Strategy aimed to reinforce its rights-based approach to disability by outlining approaches and key actions to promote a greater inclusiveness of European Union policy. The focus of this Communication rested primarily upon EU policies that were considered critical for the successful removal of ‘access barriers’ to people with disabilities. As such, it placed particular emphasis upon the achievement of a greater synergy between related issues in the fields of employment, education and vocational training, transport, the internal market, information society, new technologies and consumer policy. 3.4

The Third European Disability Strategy

The third European Disability Strategy was adopted in 2010 by the European Commission under a non-binding Communication entitled European Disability Strategy 2010–2020: A Renewed Commitment to a Barrier-Free Europe.28 This Strategy aimed to empower people with disabilities so that they could enjoy their full rights, and benefit from participating in society and in the European economy, notably through the Single Market. The key objective of the Strategy was to eliminate barriers that bring into question the economic and social participation of people with disabilities in the EU and national context. In this respect, the Commission has identified eight main areas for action: Accessibility; Participation; Equality; Employment; Education and Training; Social Protection; Health; and External Action. Specific EU-level actions were devised for each of the eight areas for action and the implementation instruments (the actions were described in a ‘list of actions’29 published in the Annex to the Strategy). In order to comply with the principle of conferral and with the obligation for the EU to only act within the limits of its competences, the Strategy was issued in the form of a Communication. This was so that its content, although binding for the Commission, did not directly commit other EU policy makers or the Member States. Member States were obliged to follow up on the Strategy’s actions only when those actions had a binding nature.

194  Research handbook on disability policy The ten-year evaluation of the Strategy was published by the Commission in November 2020.30 The evaluation shows that while there is room for improvement, the Strategy had a positive impact on EU rules and policies.31 A good example of its positive impact is the inclusion of disability issues in EU legislation and policy, with the design, adoption or revision of secondary hard law instruments such as the: 1. 2. 3. 4. 5. 6. 7.

European Accessibility Act32 Web-Accessibility Directive33 Audiovisual Media Services Directive34 European Electronic Communications Code35 Waterborne and Bus and Coach Passenger Rights Regulations36 Revision of the Rail Passengers’ Rights Regulation37 Revision of the Commission Regulation on the technical specifications for interoperability relating to accessibility of the Union’s rail system38 8. ‘Marrakesh’ Directive.39 In addition, the evaluation confirmed that not all eight areas for action were implemented in a balanced way. Most problems were identified in the area of equality. The evaluation suggested that the ambitious formulation of its objective, the non-adoption of the Equal Treatment Directive40 and the limited scope of the remaining actions led to partial achievements in eradicating discrimination based on disability in the EU. 3.5

The European Pillar of Social Rights

In 2017, the European Parliament, the Council and the European Commission jointly proclaimed the European Pillar of Social Rights41 at the Gothenburg Summit, an overall policy framework meant to achieve better working and living conditions in the EU. It sets out 20 key principles42 which represent the beacon guiding towards a strong social Europe that is fair, inclusive and full of opportunity in the 21st century. The Pillar allows for a better degree of coordination, integration and improvement of social policies across the EU. Its three core themes – equal opportunities and access to the labour market, fair working conditions and social protection and inclusion – are all relevant to people with disabilities and each area raises important questions about disability rights (Waddington & Priestley, 2018). The Pillar specifically recognizes the right of people with disabilities to social inclusion as laid down in Principle No. 17 – Inclusion of people with disabilities: ‘People with disabilities have the right to income support that ensures living in dignity, services that enable them to participate in the labour market and in society, and a work environment adapted to their needs.’ In addition, it reaffirms the supremacy of the anti-discrimination principle as laid down in Principle No. 3 – Equal opportunities: ‘Regardless of gender, racial or ethnic origin, religion or belief, disability, age or sexual orientation, everyone has the right to equal treatment and opportunities regarding employment, social protection, education, and access to goods and services available to the public. Equal opportunities of under-represented groups shall be fostered.’ The European Commission has proposed disability-related legislation to advance with the implementation of the European Pillar of Social Rights. This includes a Directive on work–life balance,43 setting new and improving existing leave rights for parents and carers, and a Council

The EU framework of people with disabilities’ rights  195 Recommendation on access to social protection for workers and the self-employed44 that also covers disability and invalidity benefits. In March 2021, it published the European Pillar of Social Rights Action Plan45 which sets out concrete initiatives to achieve the 20 Principles through a joint effort by EU institutions, national, regional and local authorities, social partners and civil society actors. 3.6

The Fourth European Disability Strategy

The fourth European Disability Strategy was adopted in 2020 by the European Commission under a non-binding Communication entitled Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030.46 The Strategy aimed to improve the lives of people with disabilities between 2021 and 2030. The Strategy takes account of the diversity of disability, resulting from the interaction of long-term physical, mental, intellectual or sensory impairments, which are often invisible, with barriers in the environment, as well as the increased prevalence of disabilities with age, with almost half of persons aged above 65 reporting some form of disability. The ten-year Strategy sets out key initiatives around three main themes (Waddington & Broderick, 2020): 1. EU rights: People with disabilities have the same right as other EU citizens to move to another country or to participate in political life. Building on the experience of a relevant pilot project ongoing in eight countries, by the end of 2023 the European Commission will propose a European Disability Card for all EU countries that will facilitate mutual recognition of disability status between Member States, helping people enjoy their right of free movement. 2. Independent living and autonomy: People with disabilities have the right to live independently and choose where and with whom they want to live. To support independent living and inclusion in the community, the Commission will develop guidance and launch an initiative to improve social services for people with disabilities. 3. Non-discrimination and equal opportunities: The Strategy aims to protect people with disabilities from any form of discrimination and violence. It aims to ensure equal opportunities in and access to justice, education, culture, sport and tourism. Equal access must also be guaranteed to all health services and employment.

CONCLUSION The regulation, administration and funding of disability policies is in principle a responsibility of the ΕU Member States. However, due to the current structure of competences in the EU legal order EU bodies (particularly the European Parliament and the European Commission through its Directorate General for Employment, Social Affairs and Inclusion) have taken a strong position to support the active participation of people with disabilities in society and the economy. The EU has adopted, and applies as part of its shared and supportive competences, a disability rights framework, which does not create new rights but only supports access to rights established by UN and national law. This framework is promoted by a complex set of (binding and non-binding) legal instruments and supported by funding machineries (the

196  Research handbook on disability policy European Investment and Structural Funds) particularly through the Cohesion Policy (Van Lierop, 2017). In some disability policy areas, the EU shares competence with Member States such as transport or the internal market. In other relevant areas, such as health, education, social inclusion and culture, the main competence remains with the Member States and the EU has a supportive role. Therefore, it remains the primary responsibility of Member States to design their national disability policies. These policies are to be in line with their obligations to implement the UNCRPD and in line with applicable EU rules as specified within primary (Treaties and the Charter of Fundamental Rights of the European Union) and secondary hard law machineries (more than 15 Regulations and Directives). In addition, EU bodies have introduced a rich set of supportive policies in the form of secondary soft law instruments without any binding effect on Member States. These instruments not only provide policy guidance to Member States, but they also may legitimize the adoption and revision of secondary hard law instruments on the initiative of the European Commission. In this context, the current EU framework reflects a complex social rights discourse in favour of people with disabilities, subject to implementation by national legislation and practice. EU bodies and national governments are still struggling to find a proper balance between hard and soft law instruments to support the effective access of people with disabilities to fundamental rights.

NOTES 1.

2.

3.

4.

5.

Start of endnote. The EU is an international, regional-based organization which promotes common economic, social and security policies. It was established by the Maastricht Treaty, entered into force on 1 November 1993. The Treaty was designed to enhance European political and economic integration by creating a single currency (the euro), a unified foreign and security policy, and common citizenship rights and by advancing cooperation in the areas of immigration, asylum and judicial affairs. End of endnote. Start of endnote. The EU currently counts 27 countries: Austria; Belgium; Bulgaria; Croatia; Republic of Cyprus; Czech Republic; Denmark; Estonia; Finland; France; Germany; Greece; Hungary; Ireland; Italy; Latvia; Lithuania; Luxembourg; Malta; the Netherlands; Poland; Portugal; Romania; Slovakia; Slovenia; Spain; and Sweden. The United Kingdom withdrew from the EU on 31 January 2020. End of endnote. Start of endnote. The competences of the EU are divided into three categories: (a) the EU has exclusive competence (Article 3 TFEU) – only the EU can act; (b) competences are shared between the EU and the Member States (Article 4 TFEU) – Member States can act only if the EU has chosen not to; and (c) the EU has competence to support, coordinate or supplement the actions of the Member States (Article 6 TFEU) – in these areas the EU may not adopt legally binding acts that require the Member States to harmonize their laws and regulations. End of endnote. Start of endnote. There is no European Union (EU) definition of ‘disability’, and definitions vary from one Member State to another, and even within single Member States. Nevertheless, since the UN Convention on the Rights of Persons with Disabilities (UNCRPD) was signed by both the EU and its Member States, the definition provided by the UN has become the common reference. End of endnote. Start of endnote. Under Article 9 of the TEU and Article 20 of the TFEU, every person holding the nationality of a Member State is a citizen of the Union. Nationality is defined according to the national laws of that State. Citizenship of the Union is complementary to, but does not replace, national citizenship. EU citizenship comprises a number of rights and duties in addition to those stemming from citizenship of a Member State. End of endnote.

The EU framework of people with disabilities’ rights  197 6.

7.

8.

9.

10.

11. 12.

13.

Start of endnote. Under Article 288 of TFEU, to exercise the Union’s competences, the EU institutions shall adopt not only hard law (Regulations, Directives, Decisions) but also soft law (Recommendations and Opinions): A Regulation shall have general application. It shall be binding in its entirety and directly applicable in all Member States. A Directive shall be binding, as to the result to be achieved, upon each Member State to which it is addressed, but shall leave to the national authorities the choice of form and methods. A Decision shall be binding in its entirety. A decision which specifies those to whom it is addressed shall be binding only on them. Recommendations and Opinions shall have no binding force. End of endnote. Start of endnote. This is the case of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which entered into force on 21 January 2011, in accordance with Council Decision 2010/48/EC of 26 November 2009 concerning the conclusion, by the European Community, of the United Nations Convention on the Rights of Persons with Disabilities. On the contrary, EU is not yet part of the Council of Europe European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR), the leading instrument for the protection of fundamental rights in Europe, to which all EU Member States have acceded. End of endnote. Start of endnote. The European Economic Community (EEC) was a regional organization that aimed to bring about economic integration among its Member States. It was created by the Treaty of Rome of 1957. Upon the formation of the European Union in 1993, the EEC was incorporated into the EU and renamed the European Community (EC). In 2009, the EC formally ceased to exist and its institutions were directly absorbed by the EU. This made the Union the formal successor institution of the Community. End of endnote. Start of endnote. The Treaty of Amsterdam, officially the Treaty of Amsterdam amending the Treaty on European Union, the Treaties establishing the European Communities and certain related acts, was signed on 2 October 1997, and entered into force on 1 May 1999; it made substantial changes to the Treaty of Maastricht, which had been signed in 1992. End of endnote. Start of endnote. The Charter was solemnly proclaimed by Parliament, the Council and the Commission in Nice in 2000. After being amended, it was proclaimed again in 2007. However, only with the adoption of the Treaty of Lisbon on 1 December 2009 did the Charter come into direct effect, as provided for by Article 6(1) TEU, thereby becoming a binding source of primary law. The Charter, although based on the European Convention for the Protection of Human Rights (ECHR) and other European and international instruments, was innovative in various ways, notably since it includes, among other issues, disability, age and sexual orientation as prohibited grounds of discrimination, and enshrines access to documents, data protection and good administration among the fundamental rights it affirms. End of endnote. Start of endnote. See: EUR-Lex - 32000L0078 - EN - EUR-Lex (europa.eu). End of endnote. Start of endnote. The ECJ gives rulings on cases brought before it. The most common types of case are: (a) Interpreting EU legislation (preliminary rulings). In this case, national courts of EU countries are required to ensure EU law is properly applied, but courts in different countries might interpret it differently. If a national court is in doubt about the interpretation or validity of an EU law, it can ask the Court for clarification. The same mechanism can be used to determine whether a national law or practice is compatible with EU law. (b) Enforcing EU legislation (infringement proceedings). This type of case is taken against a national government for failing to comply with EU law and may be started by the European Commission or another EU country. If the country is found to be at fault, it must put things right at once, or risk a second case being brought, which may result in a fine. End of endnote. Start of endnote. The Court decided in the CJEU - C 303/06 Case ‘S. Coleman v Attridge Law and Steve Law’ that Directive 2000/78, and, in particular, Articles 1 and 2(1) and (3) thereof, must be interpreted as meaning that the prohibition of harassment laid down by those provisions is not limited only to people who are themselves disabled. Under Article 2(3), harassment is deemed to be a form of discrimination within the meaning of Article 2(1) and the principle of equal treatment enshrined in that Directive in the area of employment and occupation applies not to a particular category of person but by reference to the grounds mentioned in Article 1.

198  Research handbook on disability policy

The EU framework of people with disabilities’ rights  199

32. 33. 34.

35. 36.

37.

38.

39.

40.

41. 42.

the findings of the evaluation process show that 101 actions of the Strategy (67% of total) were fully implemented throughout the whole implementation period. Forty actions (27% of total) were partially implemented and 9 actions (6% of total) were not implemented. End of endnote. Start of endnote. Directive (EU) 2019/882 of the European Parliament and of the Council of 17 April 2019 on the accessibility requirements for products and services, https:// eur -lex .europa .eu/ legal-content/EN/TXT/?uri=CELEX%3A32019L0882. End of endnote. Start of endnote. Directive (EU) 2016/2102 of the European Parliament and of the Council of 26 October 2016 on the accessibility of the websites and mobile applications of public sector bodies, https://eur-lex.europa.eu/eli/dir/2016/2102/oj. End of endnote. Start of endnote. Directive (EU) 2018/1808 of the European Parliament and of the Council of 14 November 2018 amending Directive 2010/13/EU on the coordination of certain provisions laid down by law, regulation or administrative action in Member States concerning the provision of audiovisual media services (Audiovisual Media Services Directive) in view of changing market realities, https://eur-lex.europa.eu/eli/dir/2018/1808/oj. End of endnote. Start of endnote. Directive (EU) 2018/1972 of the European Parliament and of the Council of 11 December 2018 establishing the European Electronic Communications Code (Recast), https:// eur -lex.europa.eu/eli/dir/2018/1972/oj. End of endnote. Start of endnote. Regulation (EU) No. 1177/2010 of the European Parliament and of the Council of 24 November 2010 concerning the rights of passengers when travelling by sea and inland waterway and amending Regulation (EC) No 2006/2004, https:// eur -lex .europa .eu/ legal -content/ EN/ ALL/ ?uri=CELEX%3A32010R1177; Regulation (EU) No 181/2011 of the European Parliament and of the Council of 16 February 2011 concerning the rights of passengers in bus and coach transport and amending Regulation (EC) No. 2006/2004, https:// eur -lex .europa .eu/ legal -content/ EN/ ALL/ ?uri = celex:32011R0181. End of endnote. Start of endnote. The European Parliament adopted on 29 April 2021 the revised Regulation (EC) No. 1371/2007 of the European Parliament and of the Council of 23 October 2007 on rail passengers’ rights and obligations, EUR-Lex - 32007R1371 - EN - EUR-Lex (europa.eu). This means that the Regulation will soon be officially published in the Official Journal of the EU and enter into force in May 2023. End of endnote. Start of endnote. Commission Regulation (EU) No. 1300/2014 of 18 November 2014 on the technical specifications for interoperability relating to accessibility of the Union’s rail system for people with disability and people with reduced mobility, https://eur-lex.europa.eu/legal-content/EN/TXT/ ?uri=uriserv%3AOJ.L_.2014.356.01.0110.01.ENG. End of endnote. Start of endnote. Directive (EU) 2017/1564 on certain permitted uses of certain works and other subject matter protected by copyright and related rights for the benefit of persons who are blind, visually impaired or otherwise print-disabled, https:// eur -lex .europa .eu/ eli/ dir/ 2017/ 1564/ oj. The Directive is implementing the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled, which aims to facilitate access to print works in formats adapted for persons who are blind, visually impaired or otherwise print disabled. The Marrakesh Treaty, to which the EU is party, is an international copyright Treaty administered by the World Intellectual Property Organization (WIPO). End of endnote. Start of endnote. A key action of the Strategy under this area was to ‘Support the negotiation in Council of the draft Directive on equal treatment beyond the field of employment’. In 2008, the Commission presented a proposal for a horizontal Directive on equal treatment (Equal Treatment Directive), but the proposal has since then been blocked in the Council because the required unanimity has not been reached so far. As a result, despite being partially implemented, the action did not lead to the expected results and the non-adoption of the Equal Treatment Directive has left a significant legal gap in terms of protection from disability-based discrimination. End of endnote. Start of endnote. See: https:// commission .europa .eu/ strategy -and -policy/ priorities -2019 -2024/ economy -works -people/ jobs -growth -and -investment/ european -pillar -social -rights _en. End of endnote. Start of endnote. See: https:// commission .europa .eu/ strategy -and -policy/ priorities -2019 -2024/ economy -works -people/ jobs -growth -and -investment/ european -pillar -social -rights/ european -pillar -social-rights-20-principles_en. End of endnote. ​ ​ ​ ​

200  Research handbook on disability policy 43. Start of endnote. Directive (EU) 2019/1158 of the European Parliament and of the Council of 20 June 2019 on work–life balance for parents and carers and repealing Council Directive 2010/18/EU, https:// eur -lex .europa .eu/ legal -content/ EN/ TXT/ ?uri = uriserv: OJ .L _ .2019 .188 .01 .0079 .01 .ENG. End of endnote. 44. Start of endnote. Council Recommendation of 8 November 2019 on access to social protection for workers and the self-employed 2019/C 387/01 ST/12753/2019/INIT, https://eur-lex.europa.eu/legal -content/EN/TXT/?uri=uriserv:OJ.C_.2019.387.01.0001.01.ENG&toc=OJ:C:2019:387:TOC. End of endnote. 45. Start of endnote. See: https://www.google.com/search?client=firefox-b-d&q=european+pillar+of+ social+rights+action+plan. End of endnote. 46. Start of endnote. See: https:// eur -lex .europa .eu/ legal -content/ en/ TXT/ ?uri = COM: 2021: 101: FIN. End of endnote.

REFERENCES Amitsis, G. (2004). Principles and instruments of social inclusion policies in Europe. In T. Sakellaropoulos & J. Berghman (Eds.), Connecting welfare diversity within the European social model (pp. 139–188). Intersentia. Anglmayer, I. (2020). Implementation of the Employment Equality Directive in light of the UN CRPD. European Parliamentary Research Service, European Parliament. https://www.europarl.europa.eu/ RegData/etudes/STUD/2020/654206/EPRS_STU(2020)654206_EN.pdf ​ ​ ​ ​ ​ ​ ​ ​ Blanck, P., & Flynn, E. (Eds.). (2017). Routledge handbook of disability law and human rights. Routledge. Broderick, A., & Ferri, D. (Eds.). (2019). International and European disability law and policy: Text, cases and materials (law in context). Cambridge University Press. Connor, T. (2010). Discrimination by association: A step in the right direction: Case C-303/06 Coleman v. Attridge Law and Steve Law, Judgment of the ECJ 17 July 2008. Journal of Social Welfare and Family Law, 32(1), 59–69. https://doi.org/10.1080/09649061003675881 ​ ​ ​ ​ ​ Degener, T. (2017). A new human rights model of disability. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 41–59). Springer. Degener, T. (2020). The impact of the UN Convention on the Rights of Persons with Disabilities on EU anti-discrimination law. In T. Giegerich (Ed.), The European Union as protector and promoter of equality (pp. 349–362). Springer. Egan, S., & Chadwick, A. (Eds.). (2021). Poverty and human rights: Multidisciplinary perspectives. Edward Elgar Publishing. European Commission. (2019). Special Eurobarometer 493: Discrimination in the EU (including LGBTI). Directorate-General for Communication. European Disability Forum. (2021). Nothing about us without us: EDF Annual Report 2020. https://www ​ ​ .edf-feph.org/content/uploads/2021/05/EDF-Annual-Report-2020_70621_accessible-1.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Ferri, D., & Broderick, A. (Eds.). (2020). Research handbook on EU disability law. Edward Elgar Publishing. Ferri, D., & Lawson, A. (2016). Reasonable accommodation for disabled people in employment: A legal analysis of the situation in EU Member States, Iceland, Liechtenstein and Norway. European Commission. Grammenos, S., & Priestley, M. (2020). Statistics on persons with disabilities 2018. The Academic Network of European Disability Experts. https://www.disability-europe.net/theme/eu2020?country= ​ ​ ​ ​ ​ ​ ​ ​ ​ european-union. ​ Hammersley, H. (2020). Poverty and social exclusion of persons with disabilities. European Human Rights Report Issue 4. European Disability Forum. https://www.disabilityrightsuk.org/sites/default/ files/pdf/EDFreport.pdf ​ ​ ​ Lawson, A., & Gooding, C. (Eds.). (2005). Disability rights in Europe: From theory to practice. Bloomsbury Publishing.

The EU framework of people with disabilities’ rights  201 Lawson, A., & Priestley, M. (2013). Potential, principle and pragmatism in concurrent multinational monitoring: Disability rights in the European Union. The International Journal of Human Rights, 17(7–8), 739–757. https://doi.org/10.1080/13642987.2013.834494 ​ ​ ​ ​ ​ ​ ​ Lecerf, M. (2017). European disability policy: From defining disability to adopting strategy. European Parliament. https://www.europarl.europa.eu/thinktank/en/document/EPRS_IDA(2017)603981 ​ ​ ​ ​ ​ ​ ​ ​ ​ Lecerf, M. (2020). Employment and disability in the European Union. European Parliament. https:// www.europarl.europa.eu/RegData/etudes/BRIE/2020/651932/EPRS_BRI(2020)651932_EN.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Lynggaard, K. (2019). Discourse analysis and European Union politics. Palgrave Macmillan. Machado, S. M., & de Lorenzo, R. (Eds.). (1997). European disability law. Escuela Libre Editorial. Maschke, M. (2004). Behinderung als Feld wohlfahrtsstaatlicher Politik: Eine Systematisierung der Behindertenpolitik. Berliner Journal für Soziologie, 14(3), 399–420. Priestley, M. (2007). In search of European disability policy: Between national and global. ALTER, European Journal of Disability Research, 1(1), 61–74. https://doi.org/10.1016/j.alter.2007.08.006 ​ ​ ​ ​ ​​ ​ ​ ​ Roulstone, A., & Prideaux, S. (2012). Understanding disability policy. Policy Press. Sainsbury, R., Lawson, A., & Priestley, M. (2017). Social protection for disabled people in Europe: Synthesis report. Academic Network of European Disability Experts. Tschanz, C., & Staub, I. (2017). Disability-policy models in European welfare regimes: Comparing the distribution of social protection, labour-market integration and civil rights. Disability & Society, 32(8), 1199–1215. https://doi.org/10.1080/09687599.2017.1344826 ​ ​ ​ ​ ​ ​ ​ Van Lierop, C. (2017). Cohesion policy and disability. European Parliament. Van Oorschot, W., & Hvinden, B. (Eds.). (2001). Disability policies in European countries. Kluwer Law International. Waddington, L. (2015). Saying all the right things and still getting it wrong: The Court of Justice’s definition of disability and non-discrimination law. Maastricht Journal of European and Comparative Law, 22(4), 576–591. Waddington, L., & Broderick, A. (2020). The post-2020 European disability strategy. European Parliament. Waddington, L., & Lawson, A. (2009). Disability and non-discrimination law in the European Union: An analysis of disability discrimination law within and beyond the employment field. European Commission. Waddington, L., & Priestley, M. (2018). Mainstreaming disability rights in the European Pillar of Social Rights – A compendium. Academic Network of European Disability Experts. Waldschmidt, A. (2009). Disability policy of the European Union: The supranational level. ALTER, European Journal of Disability Research, 3(1), 8–23. https://doi.org/10.1016/j.alter.2008.12.002 ​ ​ ​ ​ ​​ ​ ​ ​

16. The influence of disability models in Indonesian past and present: disability rights law-making and policy-making Abi Marutama, Antoni Tsaputra and Lengga Pradipta

1. INTRODUCTION Historical accounts suggest that the Soeharto administration introduced the Handicapped Act of 1997 as Indonesia’s first disability law. Although the Act was originally intended to protect and fulfil the rights of Indonesians with disabilities, its provisions did not adequately provide disability rights protection; instead, the Act only required the government to provide medical and social rehabilitation as well as social welfare aid (Ndaumanu, 2020). Fourteen years after its enactment, the legislation and its implementing policies came under severe censure for failing to enable Indonesians with disabilities’ full enjoyment of human rights. In response to critiques from Indonesian disability rights activists, in 2011 the Indonesian Government ratified the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD seeks to shift the general public and policy makers’ paradigm to design policies in which people with disabilities are rights holders (Degener, 2016b). The CRPD ratification led Indonesians with disabilities and the National Commission on Human Rights to resist the application of the Handicapped Act, which constructed disability as a medical problem, and build a campaign around the notion that such understanding was socially constructed and perpetuated by the Act. They successfully proposed the Indonesians with Disability Bill which was then passed as the Indonesians with Disability Act Number 8 of 2016 (IDA) by Indonesia’s House of Representatives (Nainggolan et al., 2016). The IDA, which adopts human rights principles and provisions enshrined in the CRPD (Widyantini, 2018), provides clear guidance for the government to implement disability rights, based on human rights principles. Its implementation, however, is far from what the House of Representatives intended because many of its implementing policies contradict the statute, and subsequently induce serious legal implications and disability rights violations. This chapter specifically explores how disability conceptualizations have influenced the formulation of the Handicapped Act and the IDA, which was intended to respect, protect, and fulfil the rights of Indonesians with disabilities. Additionally, it also examines how the government’s implementing regulations unlawfully contradict both Acts resulting in the violation of the rights of Indonesians with disabilities.

202

The influence of disability models in Indonesian past and present  203

2.

METHODOLOGY: DOCTRINAL LEGAL METHOD AND HISTORICAL APPROACH

In analysing findings, the chapter uses the doctrinal legal method which only examines law as its research object without considering other aspects. It uniquely examines ‘legal concepts and principles of all types-cases, statutes and rules’ (Hutchinson & Duncan, 2012, p. 84). Theoretically, the term ‘doctrinal’ is associated with the doctrine of precedent in which the law is passed from past generations and applied consistently, as well as evolving gradually and organically in society (Gawas, 2017). The doctrinal legal method focuses its research ‘in law’. It analyses the development of theories and concepts of law including but not limited to the legislative process, statutory interpretation, legislative intent, legal institution, and regulatory process. In examining law concepts and theories as mentioned in the doctrinal legal method, one may use the historical approach. In legal research, the historical approach plays an important role to discover ‘the root of any legal conception or institution which has a history that shows how it has evolved and also reveals chinks that may have developed with the passage of time’ (Pathak, 2019, p. 1). The historical approach allows legal scholars to understand how the law develops gradually over time. This approach can be used to discover the legal reasons used by law makers and the judiciary institution to overturn an old law and amend it with a new one. This approach can also be used to learn how a government exercises its executive authority to issue policies and implementing regulations to implement statutes, and whether they comply with legislative intent reflected in the statutory text. By using the doctrinal legal method with the historical approach, we may understand how the Indonesian legislators’ disability conceptualization shifted from the medical model to the social and human rights models of disability which led them to supersede the Handicapped Act with the IDA. This is important because the models of disability transform into legal norms and principles once they are adopted into both Acts, and they give the Indonesian Government the legal authority and responsibility to implement disability rights recognized under the statutes and to comply with them. In order to establish historical legal facts and statutory interpretation, we examine primary and secondary historical sources such as bills, statutes, academic documents, legislative reports, published and unpublished testimonies and opinions from people with disabilities and experts, as well as minutes of legislative meetings that describe how the Handicapped Act and the IDA were enacted.

3.

HISTORY OF DISABILITY MODELS

For many years scholars have introduced disability theories and concepts to understand ‘disability’. Among them are medical, social, and human rights models of disability. Understanding disability models will provide a valuable insight and an overview of characteristics, attitudes, concepts, and prejudice possessed by groups in society that still have limited perspectives about disability issues (Finkelstein, 1990). In this context, we try to understand each model and how they would fit and be applicable to Indonesian policy-making processes to create inclusive regulations for Indonesians with disabilities. The medical model of disability is the first model that focuses on individuals’ impairment. This model contends that people’s autonomy is limited because of the impairment they suffer

204  Research handbook on disability policy from, and they should be medically fixed first, so that they can participate in social activities (Bunbury, 2019). In this sense, it only acknowledges disability as a public health problem induced by impairment and ignores other aspects such as social and economic problems faced by people with disabilities. The medical model of disability in the Global North then influenced how disability was conceptualized in Indonesia, and this also affected how disability policies were made. We can understand how it was understood by policy makers and legislators from the use of several negative terms they introduced to the public. For instance, during the Old Order Era (1945–1966) and the New Order Era (1966–1998), Indonesia used a variety of terms to refer to people with disabilities. Some of the terms used were penyandang cacat (people with defects), penderita cacat (people suffering from defects), bercacat (having defects), kekurangan jasmani dan rohani (physically and mentally deprived), and penyandang kelainan (people with abnormalities) (Suharto et al., 2016). It is believed that the Indonesian Government’s use of these terms was influenced by the Dutch Colonial Government’s adoption of the medical model of disability, political changes, and scholars’ attitudes towards disability. Suharso, an Indonesian graduate of the Dutch School of Medicine for Indigenous Peoples who later served as Minister of Health in the 1950s, pioneered the medical model of disability in Indonesia from 1947 to 1954. During his career he established a rehabilitation centre for people with disabilities in Solo as well as a prosthetic centre for people with physical disabilities. With the government’s ongoing financial support, this eventually grew into Indonesia’s largest rehabilitation centre. Aside from the rehabilitation centre, a special school for children with disabilities, known as Sekolah Luar Biasa, was established. This school was one of the first segregated schools for children with disabilities based on the types of impairment they had (Tsaputra, 2019). The approach used by Soeharto eventually created social segregation between people with and without disability, instead of social inclusion. As the medical model failed to accommodate people with disabilities’ access to human rights, the Union of the Physically Impaired against Segregation (UPIAS) introduced a new social definition of disability. UPIAS viewed disability as a disabling aspect of society that could be the source of discrimination, and defined disability as ‘the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairment, and thus excludes them from participation in the social activities’. Disability can also be defined as a particular form of social oppression (The Union of the Physically Impaired Against Segregation (UPIAS) & the Disability Alliance, 1976, p. 14). Following that, Mike Oliver invented the phrase ‘social model of disability’ which emphasizes that the problem of disability is within society that fails to provide services and ensure people with disabilities’ needs are fulfilled (Oliver, 1990a). Furthermore, studies by Finkelstein and Oliver demonstrate that the social model provides inclusive opportunities for people with disabilities in exercising their civil and political rights within the community (Oliver, 1990b). Owens claimed the social model as the most well-established approach to understanding disability and people with disabilities (Owens, 2015). Disability rights activists in Indonesia had a similar notion to the social model. It can be traced back to when many Indonesian activists participated in the Reformasi (reform) movements led by Indonesian civil society organizations at the end of Soeharto’s regime in 1998, which provided momentum for oppressed minority groups (Antlőv et al., 2008), including people with disabilities, to voice their aspirations (Aspinall, 2013). They contended that policies and regulations structurally ‘disabled’ people’s ability to exercise their rights

The influence of disability models in Indonesian past and present  205 and demanded the government devote more resources to implementing programs aimed at achieving equal rights for people with disabilities in all aspects of life (Thohari, 2011). This momentum was also used by progressive disability activists in Yogyakarta and Central Java to challenge the official term penyandang cacat (people with defects/the handicapped) used to describe an individual with disability in government policies by proposing the term difabel (people with different abilities). Even though advocates believe the term difabel is the most appropriate and positive term for people with disabilities in Indonesia, it has never been used as the official term in the statutory text, and instead the term penyandang disabilitas (a person with disability) is officially used in the IDA. Although the social model of disability has successfully explained that disability is a social construct and problems related to it come from factors outside of the individuals who experience disabilities, the social model has also been criticized because it tends to blame society for ‘disabling’ individuals with disabilities, and ignores the presence of impairment which is people’s personal experience (Shakespeare & Watson, 2002). It also overlooks the recognition of inherent human rights which people with disabilities are entitled to, while in the absence of the social model, a civil rights movement successfully urged the US Government to sign Section 504 which recognizes that people with disabilities have the same human rights as people without disability (Fleischer & Zames, 2005). Following that, the adoption of the CRPD in 2006 brought another alternative to understanding disability. The Convention formally sets an unprecedented international human rights standard for people with disabilities. Degener points out that the human rights model enshrined in the Convention focuses on the inherent dignity of human beings. Human rights do not require people’s impairment to be medically treated first. The Convention requires national policies around the world to contain provisions guaranteeing people with disabilities’ full and equal enjoyment of human rights (Degener, 2016a). This notion gradually began to have an impact on disability activism in Indonesia, highlighted by several protests across Indonesia demanding the termination of the Handicapped Act due to its provisions neglecting people with disabilities’ full enjoyment of human rights. Protesters used this momentum to demand the Indonesian Government ratify the CRPD in 2011 after signing it in 2007. Consequently, to implement the CRPD the Indonesian Government also had to enact the IDA which adopts the human rights model of disability enshrined in the CRPD.

4.

THE HANDICAPPED ACT: THE CONTESTATION BETWEEN THE MEDICAL AND SOCIAL MODELS OF DISABILITY

There is no sufficient legislative evidence that directly mentions or suggests how the medical model of disability became the foundation of the Handicapped Act formulation. However, the legislators’ tendency to understand disability as the medical model of disability can be found in a set of legislative minutes. According to the minutes the initiation of the Handicapped Bill was set in motion after a series of seminars and workshops on disability organized by the Indonesian Department of Social Affairs (DOSA) in cooperation with the Japan International Cooperation Agency from 1996 to 1997. They concluded that despite the enactment of Government Regulation Number 36 of 1980 on Social Welfare Provision for the Handicapped, it was not sufficient to address problems facing Indonesians with disabilities. They contended that in order to guarantee Indonesians with disabilities’ rights to enjoyment of national devel-

206  Research handbook on disability policy opment programmes on an equal basis, a statute should be established in conformity with the national development objectives (Republic of Indonesia House of Representatives, 1996a). In a legal context, a disability definition is important because it has legal consequences about what rights people with disabilities are entitled to. The Handicapped Act referred to people with disabilities as people with defects/the handicapped, and defined them as follows: The Handicapped are individuals who have physical and/or mental impairment that may disrupt and hinder their activities. The handicapped consist of: 1. People with physical impairment. 2. People with mental impairment. 3. People with physical and mental impairment.

Following the ‘handicapped’ definition, the House of Representatives and DOSA outlined three rights that the Handicapped Act covered. They were the rights to rehabilitation, to obtain social protection, and to receive social welfare services. However, in the final legislative meeting, the House of Representatives changed them to six rights, namely: the rights to education, employment, equal participation in development and enjoyment of its benefits, rehabilitation, social protection and welfare programmes, and to develop abilities, talents, and social skills. Despite this, more historical accounts suggest policy products, such as development programmes and implementing regulations based on the rights derived from the Handicapped Act, tended to divide the whole society into two contrasting categories – namely the handicapped and non-disabled people. This was a typically discriminatory dichotomy influenced by the medical model of disability in which disability is perceived as a problem that needs to be solved, rather than its acceptance as a part of human diversity. As a result, there was a striking dichotomy in policies application for non-disabled people and the handicapped which contributed to the isolation of the handicapped from general society (Salim, 2019). Furthermore, Salim wrote that in light of some discrimination faced by Indonesians with disabilities under the Handicapped Act application, that the term ‘handicapped’ was finally challenged by several disability rights activists. Mansour Fakih, a sociologist, was the first person who introduced the term ‘different ability’ to challenge the term ‘handicapped’ because the latter had profoundly divided society and led to discriminatory treatment and negative attitudes towards Indonesians with disabilities. The term ‘different ability’ was then followed with a notion of bringing people together to bridge the gap between people with and without disability and to resist the structural and systematic exclusion of people with disabilities that was perpetuated by the medical model enshrined in the Handicapped Act. Following the emergence of the term ‘different ability’, several disability organizations emerged to bring more people with disabilities’ voices to the surface. One of them is Bandung Independent Living Centre (Bilic). Its naming was influenced by the emergence of Independent Living Centres across the US whose mission is to advocate for people with disabilities’ independence to assess what they need and make their own decisions. The idea of independent living very much resembles the concept of the social model that fundamentally challenges the medical model. While the medical model asserts that disability is merely a medical issue, the social model argues that disability is a social construct. The construction of our societal fabric is made by and for able-bodied people. Consequently, those who are disabled may not fit into societal structures (Illinois University Library, 2020). The fall of the Soeharto administration in 1998 brought an opportunity for Indonesian disability rights organizations to manifest their advocacy by spreading the use of the term

The influence of disability models in Indonesian past and present  207 ‘different ability’, demonstrating people with disabilities’ independent living to society, and demanding that the way the Soeharto administration treated people with disability must be ended by Soeharto’s successor. The Soeharto administration perceived the handicapped as people who had no capability leading to their marginalization, while the term ‘different ability’ was understood by disability rights activists as everyone is capable of doing anything with their own different abilities (Thohari, 2019). Consequently, the next administrations must recognize that people with disabilities have the same capability as their peers without disability, and it is the stigma and unfair statute that disables them, and thus such a law must be amended.

5.

THE INDONESIANS WITH DISABILITY ACT: THE END OF THE MEDICAL MODEL AND THE BEGINNING OF THE HUMAN RIGHTS MODEL

Disability rights advocates in the post-Soeharto era urged the amendment of the Handicapped Act. The first reason for its amendment is that it was enacted before the first amendment of the 1945 Constitution took place in 1999. The first amendment specifically laid the foundation of human rights recognition which was the major change in the Indonesian legal system. Human rights recognition in the Constitution automatically prompted all statutes and regulations passed before the first Constitution amendment to be reviewed to ensure they did not contradict the Constitution. From a philosophical perspective, the law must always adapt ‘with a great variety of social settings and types of government’ (Slapper, 2014, p. 1), and thus, the Handicapped Act, the provisions of which lacked a human rights perspective, needed to be amended. The second reason is that Indonesia ratified the CRPD. Fajri Nursyamsi, a disability law expert from the Indonesian Centre for Law and Policy Studies, argues that the adoption of the CRPD by the United Nations (UN) does not form new rights; rather it reiterates a clear message that people with disabilities are entitled to all rights recognized in all applicable international human rights treaties. As a result, all Member States must implement the CRPD provisions through their national laws. Considering the fact that the Handicapped Act was implemented based on the medical model and failed to comply with the CRPD provisions, the Handicapped Act amendment was undeniably necessary (Nursyamsi et al., 2015). The formulation of the Indonesians with Disability Bill (IDB) began in 2015 with the publication of an academic paper accompanying the IDB. According to the academic paper, there were four major problems that hampered disability rights implementation after the Handicapped Act entered into force. First, the term ‘handicapped’ had a strong association with the medical model resulting in society treating people with disabilities as sick people. Second, as the Act provisions did not adequately address the needs of accessibility provision and equal opportunities, people with disabilities found it difficult to fully participate in a wide range of social, economic, and cultural opportunities. Third, the Act lacked provisions for the protection, fulfilment, and respect of people with disabilities’ rights. Finally, the prohibition on discrimination against Indonesians with disabilities and its punishments were not adequately explained in the Act (Daming, 2015). Additionally, the academic paper proposed that the IDB must be able to define the term ‘disability’ and the types of disability in accordance with the universal understanding of disability set out in the CRPD. Another two things that stood out from the IDB were that the government

208  Research handbook on disability policy must establish a national and sub-national coordination system to implement disability rights, and their implementation must be supervised by an independent national disability rights institution. In response to the academic paper and the IDB, the House of Representatives recognized that the future disability law must be in accordance with the human rights concept. Therefore, the definition of disability must be in line with the CRPD definition (Republic of Indonesia House of Representatives, 2015). The IDB was passed into the IDA in 2016. It defines the term people with disabilities as follows: A person with a disability is an individual who experiences physical, mental and/or sensory limitations in their interaction with (physical and virtual) environments and/or societal attitudes that may induce restriction and difficulty in their full and effective participation with other citizens without disability on an equal basis.

In the definition the legislators emphasize that disability only occurs when someone with a physical, mental, or intellectual impairment interacts with physical environments and social attitudes which may hinder their full participation. In other words, the IDA has abandoned the medical model of disability as an element of disability definition and adopts the social model as an element of disability definition which is a manifestation of many years of civil rights protests by disability rights activists that significantly shifted the legislators’ paradigm (Rahayu & Mahardika, 2015). As intended by the House of Representatives, the IDA provisions were established based on the human rights concept which ‘implies that all people are active subjects with legal claims and that persons with disabilities need to participate in all spheres of society on an equal basis with their non-disabled peers’ (Worm, 2012, p. 4). In an electronic communication on 4 March 2021 with Maulani A. Rotinsulu, the Chairwoman of the Indonesian Association of Women with Disabilities and one of the IDA initiators, she contended that the IDA provisions resemble the CRPD provisions. It has 25 development sectors to be carried out by different government agencies that require multisectoral approaches and reciprocal cooperation among them. However, the statute delegates the mandate of coordination for its implementation to the Ministry of Social Affairs (MOSA) which was unanimously rejected by progressive Indonesian disability activists because the MOSA has long perceived people with disabilities as charity programmes recipients, rather than rights holders. In addition, Fajri explained in an electronic communication on 5 March 2021 that from the very beginning the IDA was intended to incorporate the CRPD provisions and principles into the Indonesian bureaucratic and legal systems to address disability rights issues. Its statutory framework is based on the CRPD provisions which can be seen in its Chapters II and III that specifically govern the very basic concepts of disability, people affected by disability, and their rights. As a human rights law, the IDA uniquely guarantees 22 rights which are not accommodated in the Handicapped Act. One of them is the right to data collection. It is known that disability-related data collection often produces striking data discrepancy amongst government agencies that conduct it. The data discrepancy may be linked to the varied and indefinite methods and criteria used in data collection processes. As a result, there are more people with disabilities than statistics have shown (Amaliah, 2016). Disability data collection is unquestionably needed because it:

The influence of disability models in Indonesian past and present  209 play(s) a pivotal role in all areas of policy-making and in every stage from development and implementation, to monitoring and assessment of effectiveness, to the analysis of cost-effectiveness. Policy without valid and reliable data is potentially costly and wasteful guesswork; it is policy without a basis of evidence and good science. (World Health Organization & United Nations Economic and Social Commission for Asia and the Pacific (WHO/ESCAP), 2008)

In an effort to improve data collection for better evidence-based policy-making, the government began to use Washington Group Questions in its 2018 census (Hastuti et al., 2020). When an executive agency writes an implementing policy, it ideally cannot deviate from an administrative law that controls and gives the executive branch authority to implement it through the process of policy-making (Kim, 2014). Therefore, policy choices must be made in accordance with the IDA as an administrative law and valid data obtained from the application of Washington Group Questions. Compared to the Handicapped Act, the IDA has more legal binding provisions that explain detailed disability rights implementation mechanisms that constrain the government from exceeding its executive authority.

6. DISCUSSION We start our legal review on the Handicapped Act. We argue that the definition of the ‘handicapped’ in it had a strong linkage with the medical model. Its definition clearly only mentioned ‘each individual who has physical and/or mental impairment which may disrupt and hinder their participation’ which implies that impairment was the only factor that contributed to a person’s disability. In addition, a legislative consideration in Book 1 of the Handicapped Bill also recognized that disability was a medical condition which was mainly caused by malnutrition, communicable and non-communicable diseases, and ageing-related morbidities. The legislative consideration literally confirms that the House of Representatives perceived disability as a health problem. This paradigm then was adopted as an element in defining the term ‘handicapped’. Furthermore, the six rights mentioned in the Act did not effectively remove physical and social barriers. In essence, these rights could not be fully implemented because the policy makers, whose paradigm was the medical model, perceived the handicapped as sick people who needed medical attention instead of human rights fulfilment. As a result, instead of implementing the six rights, the policy makers only fulfilled the material needs of people with disabilities such as nutrition and health services. People with disabilities’ needs were assessed by professional social and health workers and referred to medical doctors so that they could get ‘fixed’ (Katsui & Kumpuvuori, 2008). To this extent, these rights did not help people with disabilities to move forward and make their own life decisions; rather they maintained people with disabilities as rehabilitation and development objects. In regards to the deliberate dichotomy of the ‘handicapped’ and non-disabled people, we contend that this may link to the past legislative meetings where the House of Representatives and the government agreed that people with disabilities had equal opportunities to quality education and decent employment on the basis of the impairment level he/she experienced (Republic of Indonesia House of Representatives, 1996b). This decision led to several different regulations being applied discriminatively to people without disability, and people with mild and severe disabilities. The severity of the impairment would determine whether someone was eligible to access quality education and decent employment. The less severe the impairment someone had, the more ‘normal’ he/she became, and the more likely they were

210  Research handbook on disability policy to get access to education and jobs they desired. Meanwhile, those whose impairment was considerably severe must be medically ‘fixed’. For example, the Handicapped Act stipulated that people with disabilities were entitled to receive quality education, and under the National Education System Act of 2003 children with and without disability were entitled to study at public schools where lessons were inclusively delivered. However, the government applied an additional condition under the Government Regulation No. 19 of 2005 on Special Education stipulating children with certain levels of physical, mental, and intellectual impairments were to learn at special schools that segregate them from children without disability (Efendi, 2018). Furthermore, we argue that the different application of policies not only discriminated against people with disabilities, but also contradicted what the statute ordered. According to a study in 2010, a primary factor that contributed to the government’s inconsistency in implementing the Handicapped Act was that many government agencies did not write implementing regulations to implement the Act. Instead, they wrote ministerial regulations and circulars which, according to the constructional law, have no legal basis to implement the Act (Irwanto et al., 2010). Although they wrote implementing regulations, they tended to contradict the statute because they did not undergo public consultations in which stakeholders could provide advice and suggestions to formulate their provisions. For instance, although the Handicapped Act required the private sector to employ people with disabilities with a 1 per cent minimum of 100 employees and those that violated the Act provisions would be punished with a maximum six-month imprisonment or an IDR 200,000 fine (about US$15), it was very unlikely that companies would hire one because its implementing regulation did not impose the sanction. The private sector’s unwillingness to employ people with disabilities may also be compounded by the Indonesian Government’s legal non-compliance, indicated by a policy choice it made in public sector employment. This can be illustrated with the Workforce Act of 2003 prohibiting each employer from discharging an employee from his/her position due to his/her disability unless his/her disability lasts for more than 12 months. However, a Joint Decree of the Ministry of State Apparatus and Ministry of the Interior Number 01/SKB/M​.PAN/​4/​2003, 17/2003 authorized government institutions to prevent someone who was disabled from being employed and to terminate a civil servant’s employment due to his/her disability while on duty (Priebe & Howell, 2014). Our next legal review on the academic paper written by Daming (2015) finds many of the Handicapped Act provisions, including the definition of the handicapped, and its implementing policies failed to recognize the importance of disability rights fulfilment and protection. Following that, the rise of the term ‘different ability’, which resembles the social model of disability, drove Indonesians with disabilities and the House of Representatives to pass the Indonesians with Disability Act (IDA). The legislators came to an understanding that the statute would adopt the CRPD provisions which recognize human rights as the core element of disability rights policy-making, making its provisions more sufficient for addressing disability rights issues facing Indonesians with disabilities. Additionally, the statute also delegates limited power to the executive branch to implement it in conformity with legislative intent only, implying that when an executive agency writes an implementing policy, it must neither contradict nor exceed what the statute orders. We, however, find that despite having clear and adequate human rights provisions and strict rules of limitation that prevent the government from writing discriminatory policies, the implementation of the IDA is contradictory to what the legislators intended. We have a defining example that may indicate how the policy choices

The influence of disability models in Indonesian past and present  211 made by the Indonesian Government contradict the IDA statutory text. It is the unlawful recent establishment of the National Commission on Disability (NCD). The NCD establishment is mentioned in Article 131 of the IDA, which clearly suggests that to ensure the protection, fulfilment, and respect of disability rights, an independent NCD shall be established. Following that, Article 134 mandates that its establishment shall be regulated by a Presidential Regulation. The statute also outlines that the maximum time taken to establish the NCD is three years after it has entered into force. However, the government took about four years to establish it. In 2020, the Office of the President issued Presidential Regulation No. 68 on the NCD, the provisions of which unlawfully contradict the IDA. In response to the government’s legal non-compliance, Fajri contended there are three reasons why the Presidential Regulation is unlawful and must be amended (Dian, 2020). First, according to the Presidential Regulation the NCD is placed under the MOSA’s organizational structure. However, according to Presidential Decree No. 48 of 2015 the MOSA is not assigned to work on human rights issues, whereas the NCD functions to ensure disability rights are respected, fulfilled, and protected. Second, the NCD placement under the MOSA organizational structure will compromise the NCD’s independence as potential conflicts of interest may arise between the two organizations. Third, under the current NCD establishment provisions, people with disabilities’ interests are underrepresented because of weak NCD independence. The reason for this is that the government misinterprets that the NCD is part of the coordination system carried out by the MOSA as mentioned in IDA Article 129. However, the NCD is an independent national institution and has its own duties as outlined in Chapter VI of the IDA. Additionally, we contend that such legal non-compliance may be linked to the delegation of disability rights-related responsibilities to the MOSA which persistently perceives people with disability in the medical model approach while the IDA adopts the human rights model. Taking the example into account, we argue that the government completely disobeys the statute when writing disability rights implementing policies, and subsequently unlawfully violates disability rights. From a legal perspective, once a statute is passed by the legislature, it immediately transfers authority and responsibility to executive agencies to implement that statute in accordance with legislative intent (Walker, 1999). From a political perspective, a statute is a by-product of policy choices and political consensus. However, it also has power to limit a government’s authority to write a policy containing provisions which may exceed its executive authority and the scope of statutory limitations that it sets out. Statutes are guidance that must not be breached by any individuals, including a government in order to reach good governance, order and the supremacy of law based on the rule of law because the law is the highest rule that even policy choices cannot supersede (Fink, 2016). When it comes to the executive’s policy-making authority, there are two crucial terms that must be distinctively clarified as they have different legal consequences and may affect how human rights are protected, fulfilled, and respected by governments. First, the term ‘rule by law’ implies that the law is used by governments as an instrument to regulate their subjects, and thus they may be considered as a legal entity whose authority is above the law. At this point, they may arbitrarily abuse their power to rule and control their subjects at the expense of people’s human rights. Second, by contrast, the term ‘rule of law’ implies that the law is the highest rule, and thus it equally binds everyone, including governments, to comply with it (Tommasoli, 2012). The existence of the rule of law signifies human rights, including dis-

212  Research handbook on disability policy ability rights, are protected by the law. If the rule of law does not exist or if its supremacy is weakened by unlawful policy choices, human rights will not be fully protected and fulfilled. Indonesia, as a nation that embraces the supremacy of law principle, applies the law as the highest rule to uphold justice and human rights. The IDA, which is a part of the national statute law, functions to guarantee that people with disabilities can exercise their rights. At the same time, it also confines the government’s authority to only write implementing policies based on the legislative intent reflected in the statutory text. Consequently, as social and human rights models of disability have become the foundation of the legislative intent, the government must adhere to the statute when exercising its authority to write implementing policies. The government must not exceed its authority restraints that the statute sets out, or otherwise the regulations it writes may potentially be unlawful and violate human rights (Clegg et al., 2016). However, as the example suggests, we argue that the government has illegally exceeded its authority in writing policies, thus such action is regarded as an act of human rights violation. In other words, the violation of a human rights statute constitutes the violation of human rights themselves recognized under the statute. To prove that the government has violated disability rights provisions in the IDA, we may employ the textualism approach in interpreting the statutory text. The textualists argue that legislative intent is reflected in each word that appears in the statutory text. ‘Textualists care about statutory purpose to the extent that it is evident from the text’ (Brannon, 2018, p. 14). In this sense, we must refer to each word in the IDA. Its Chapter VI clearly suggests that the NCD is an independent institution whose function is to ensure that the implementation of disability rights in Indonesia is in accordance with the IDA. This implies that no branches of government may compromise its independence. Hence, it makes the NCD an important national human rights institution in Indonesia (Kumalasari, 2017). According to the Paris Principles (UN General Assembly Resolution 48/134 of 20 December 1993), a National Human Rights Institution (NHRI) shall be given a broad mandate to ensure and promote the implementation of human rights by monitoring imminent human rights violations and providing advice to the legislative, executive, and judiciary institutions with respect to human rights fulfilment and protection. Additionally, an NHRI shall be autonomous from a government’s power in exercising its authority and duty. Therefore, placing the NCD under the MOSA organizational structure is unlawful and contradicts the legislative intent as well as the international law. In other words, the Presidential Regulation on the NCD contradiction does not only violate the statutory text and international law, but also violates Indonesians with disabilities’ rights. The IDA is a human rights statute, the provisions of which contain universal human rights recognized by civilized nations, including Indonesia. Therefore, the contradiction against it can be interpreted as an act of human rights violation because placing the NCD under the MOSA not only contradicts what the IDA orders, but also weakens its very independence. As a result, the implementation of disability rights in Indonesia may not be optimal as the government’s influence over the NCD may cloud the latter’s judgement and oversight on the former’s performance in implementing the IDA. The government’s legal non-compliance raises a policy analysis question; why the government cannot comply with the IDA while the statutory text clearly provides guidance? In response to that, Maulani, in the same electronic communication on 4 March 2021, wrote that the Indonesian Government’s contradictory policy-making occurs because the policy makers lack sufficient knowledge in disability rights enshrined in the IDA. She believes that

The influence of disability models in Indonesian past and present  213 their lack of disability rights knowledge is induced by less optimal and incomplete disability rights knowledge awareness which should be incessantly promoted by the highest-ranking government officials. As a result, their lack of disability rights knowledge is manifested in several implementing regulations that contradict the legislative intent as demonstrated by the example above. Additionally, Fajri specifically noted that most government agencies that are responsible for writing policies tend to not involve people with disabilities when drafting implementing policies and even avoid conducting public consultations that, according to the Legislation Act of 2011, must be done prior to the enactment of policies. Only a small number of government agencies open their doors for people with disabilities to conduct public consultations. He believes this unlawful practice occurs because of the difficulty in mainstreaming disability rights issues into multisectoral implementing policies. Rather the government responds to disability rights issues by applying social welfare policies managed by the MOSA with its medical and welfare aid approaches. Lastly, the lack of funding for disability rights implementation also compounds the Indonesian Government’s legal non-compliance. Disability policies are, in many cases, not supported with a sufficient budgetary policy. As a result, many of the executive agencies write disability rights policies based on the amount of the funds allocated in a limited budgetary appropriation, instead of complying with the statutory text. This situation simply leaves the policy makers with ‘unfunded mandates’ which are hard to carry out (Powell, 2004).

7. CONCLUSION The Handicapped Act, Indonesia’s first disability rights legislation, the provisions of which adopted the medical model of disability, failed to fulfil and protect Indonesians with disabilities’ rights. Its failure is simply because the Act lacked provisions that recognize human rights, and the policy makers’ understanding of disability based on the medical model misled them to apply discriminatory implementing policies to the handicapped and non-disabled people, resulting in discrimination against the former. Following a series of discriminatory treatments against Indonesians with disabilities, disability rights activists began to resist the oppression by establishing disability rights organizations and coining the term ‘different ability’, which resembles the social model of disability, to challenge the Handicapped Act application. Following that, disability rights activists successfully urged the government to ratify the CRPD in 2011, and subsequently to pass the IDA in 2016. Unlike the Handicapped Act, the IDA provisions were formulated based on the CRPD provisions and human rights principles which suffice to respect, fulfil, and protect the rights of Indonesians with disabilities. Despite having clear and adequate provisions, the government implements the Act in contradiction to the legislative intent which raises a concern with respect to disability rights violation. For example, the Presidential Regulation on the NCD stipulates that the NCD is placed under the Ministry of Social Affairs organizational structure, while IDA Chapter VI stipulates that it is an independent human rights institution that should be autonomous from other government agencies’ influence which may induce unnecessary conflicts of interest between the NCD and other agencies. We argue that such legal non-compliance is linked to the policy makers’ lack of disability rights understanding as understood by the legislators which can be

214  Research handbook on disability policy seen in the statutory text. Finally, the contradiction between the government’s implementing policies and the legislative intent may also be linked to the lack of disability rights funds allocated to each executive agency. As a result, instead of writing disability rights policies based on what the legislators intended, they write it based on the budgetary policy which provides a limited amount of funds for disability rights implementation.

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216  Research handbook on disability policy Republic of Indonesia House of Representatives. (1996b). Rancangan undang-undang tentang penyandang cacat buku 2b (The Handicapped Bill Book 2b). Secretariat General of Republic of Indonesia House of Representatives. Republic of Indonesia House of Representatives. (2015). Laporan singkat rapat badan legislasi dpr RI dalam rangka mendengarkan penjelasan dari wakil pengusul ruu tentang penyandang disabilitas (Brief report on the Indonesians with Disability Bill legislative meeting between the House of Representatives and the Bill’s initiator). Secretariat General of Republic of Indonesia House of Representatives. Salim, I. (2019). Keluar dari hegemoni pencacatan: Sebuah kajian politik pengetahuan dalam aktivisme gerakan difabel Indonesia (Escape from the hegmony of the handicapped label: A scientific political work on the activism of the different ability movement in Indonesia) [Doctoral Dissertation, Universitas Gadjah Mada]. Shakespeare, T., & Watson, N. (2002). The social model of disability: An outdated ideology? Research in Social Science and Disability, 2, 9–28. https://www.um.es/discatif/PROYECTO_DISCATIF/ ​ ​ ​ ​ ​ ​ ​ Textos_discapacidad/00_Shakespeare2.pdf ​ ​ ​ ​ Slapper, G. (2014). How the law works (3rd edn). Routledge. Suharto, S., Kuipers, P., & Dorsett, P. (2016). Disability terminology and the emergence of ‘diffability’ in Indonesia. Disability & Society, 31(5), 693–712. https://doi.org/10.1080/09687599.2016.1200014 ​ ​ ​ ​ ​ ​ ​ The Union of the Physically Impaired Against Segregation (UPIAS), & the Disability Alliance. (1976). The Union of the Physically Impaired Against Segregation and the Disability Alliance discuss fundamental principles of disability. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ library/UPIAS-fundamental-principles.pdf ​ ​ ​ ​ Thohari, S. (2011). Contesting conceptions of disability in Javanese society after the Suharto regime: The case of Yogyakarta, Indonesia. Hawaii University. http://hdl.handle.net/10125/101399 ​ ​ ​ ​ ​ Thohari, S. (2019). Promoting ‘difabel’: Promoting a social model of disability in Indonesia, study of disability movement in Yogyakarta. Jurnal Kajian Ruang Sosial Budaya, 3(1), 79–99. doi: 10.21776/ ub.sosiologi.jkrsb.2019.003.1.06 Tommasoli, M. (2012). Rule of law and democracy: Addressing the gap between policies and practices. UN Chronicle (49th edn, pp.  29–31). https://www.un-ilibrary.org/content/journals/15643913/49/4/8/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ read Tsaputra, A. (2019). Disability inclusive budgeting in Indonesia: A pathway to difabel citizenship [Doctoral dissertation, University of New South Wales Sydney]. UNSW Sydney. https://doi.org/10 .26190/unsworks/21637 ​ ​ Walker, M. E. (1999). Congressional intent and deference to agency interpretations of regulations. The University of Chicago Law Review, 66(4), 1341–1371. https://doi.org/10.2307/1600371 ​ ​ ​ ​ ​ Widyantini, A. R. (2018). Paradigma human rights based dalam kerangka hukum penyandang disabilitas (Human rights paradigm in the legal framework of disability rights). Jurnal Kesejahteraan Sosial, 2(2), 172–179. https://doi.org/10.31326/jks.v2i02.156 ​ ​ ​ ​ ​ ​ ​ World Health Organization, & United Nations Economic and Social Commission for Asia and the Pacific (WHO/ESCAP). (2008). Disability statistics: Why are they important and what does the ICF add? https://www.unescap.org/sites/default/files/Chapter1-Disability-Statistics-E.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Worm, I. (2012). A human rights-based approach to disability in development: Entry points for development organizations. Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) GmbH & Christian Blind Mission (CBM). https://reliefweb.int/sites/reliefweb.int/files/resources/ ​ ​ ​ ​ ​ ​ ​ ​ A_human_rights-based_approach_to_disability_in_development.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​

17. The Accessible Canada Act: a political expression of disability rights as human rights Michael J. Prince

INTRODUCTION Worldwide, human rights legislation for people with disabilities is a continuing evolution in contemporary state politics, citizenship practices, and societal exclusions and inclusions. Signs of this disability rights evolution in the 21st century include most countries ratifying the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and many nations introducing legally binding statutes with enforcement mechanisms of various kinds and effectiveness, pushing the boundaries and content of freedoms and rights (Berghs, Chataika, El-Lahib & Dube 2020; Disabled World, 2020; Sabatello & Schulze, 2013; Series, 2019). This chapter explores this continuing evolution in disability rights through a case study of disability rights as human rights in an advanced liberal welfare regime. The chapter examines the passage of the Accessible Canada Act (ACA) by the Parliament of Canada in 2019. The stated purpose of this Act is to benefit all persons, especially persons with disabilities, through the realization within matters coming under the legislative authority of Parliament of a barrier-free Canada by 2040. The ACA applies to employment, the built environment, information and communication technologies, the procurement of goods, services and facilities, the design and delivery of programmes and services, transportation, and other areas designated under regulations. I address three sets of questions. First, what role did disabled people’s organizations serve in the development of this law? What opportunities existed for their participation in public consultations and legislative processes? Second, what kind of human rights approach to disability does the ACA signify? What is the scope and nature of the rights provided for in the ACA? In other words, how robust and extensive is the law as a human rights approach to disability? Third, what are the likely symbolic and substantive effects of the Act on policies and practices, on popular understandings of disability, and on disability movement organizations? The chapter considers these questions in turn. The first section discusses the nature of disability activism in relation to the development and passage of the ACA and the second section outlines the disability and human rights landscape in Canada. The third section describes the nature of Canada’s liberal welfare state regime and the human rights conceptions evident in the ACA. The fourth section discusses the categories of human rights expressed in this legislation, and the fifth section considers some likely effects of the law on disability rights and policy issues. The final section offers concluding observations.

DISABILITY ACTIVISM IN LEGISLATING RIGHTS This case of human rights law-making offered political spaces for collective action by people with disabilities, spaces for coming together in coalitions and networks based on shared 217

218  Research handbook on disability policy values and goals forged in working relations, previous campaigns, and personal connections. Consultative and legislative processes for the ACA drew disability activists, disability organizations, and their allies into multiple formal interactions with state officials and policy-making. This activism by the disability community – of which this author was a participant – comprised mainly conventional political activities of working within the Canadian state. This entailed participating in federal government consultations, meeting with Members of Parliament and with Senators, meeting with departmental officials and ministerial staff, submitting policy briefs to, and appearing as witnesses before, both House of Commons and Senate committees reviewing drafts of the accessibility legislation. Other actions included petitions, open letters to key political leaders, and getting messages out in the mass media and social media. Strategic goals of the disability movement included getting the Justin Trudeau federal government, when first formed in November 2015, to introduce actual legislation following a robust process of public consultation. This was not a certainty, as there had been the promise of a Canadians with disabilities law by the previous government (Prince, 2010). The disability movement wanted to have input on drafting the legislation before and after introduction. When a bill arrived in the Canadian House of Commons in June 2018, the goals then were to improve the bill, to secure all-party support for the law, and to get it adopted before a general election, expected in the fall of 2019. Disability activists worked on influencing public servants responsible for drafting and advising on legislative details, government leaders responsible for high-level decisions regarding the legislation, and parliamentarians responsible for ultimately approving the legislation. Community groups articulated inclusive notions of disability, barriers, accessibility, and particular ideas on prerequisites for a strong law on accessibility as essential mechanisms for tackling existing injustices of everyday exclusions, systemic obstacles, and significant disadvantages faced by people with disabilities. Human rights and equality served as the frame for collective action (Federal Accessibility Legislation Alliance, 2018). In turn, government officials facilitated and managed consultative processes. The official consultation, announced in the March 2016 budget, ran from June 2016 to February 2017, with a May 2017 government report documenting ‘what we learned from Canadians’ about creating federal accessibility legislation. More than 100 organizations and over 6,000 individuals participated overall via an online questionnaire (available in Braille, large point, e-text, audio, and sign language), a national youth forum, nine roundtables, and 18 public engagement sessions. To support accessible in-person consultations, meetings included English and French real-time captioning, American Sign Language and Quebec Sign Language, and support services for participants who are deaf-blind. In the Canadian north, Inuit sign language was provided. The federal government also offered financial resources to several disability organizations and Indigenous organizations to engage their members and communities. The federal government rightly claimed that this was the most inclusive and accessible consultation ever with Canadians with disabilities (Canada, 2018). After the accessibility bill arrived in Parliament, disability coalitions responded both quickly and comprehensively with specific ideas to strengthen the proposed legislation. One alliance put forward 93 amendments; a few months later a coalition of 95 organizations sent an open letter to the Minister and to parliamentary committee members identifying nine concerns about the bill and proposing corrective actions (McQuigge, 2018). With a focused agenda, high-quality analyses of the bill, and sympathetic backbench Members of Parliament, disability

The Accessible Canada Act  219 activists had modest success with the House of Commons standing committee on the status of persons with disabilities. That committee recommended amendments that expanded the focus of the identification, removal and prevention of barriers; that set time limits for the making of regulations in relation to the duties of regulated entities; and that clarified the appeals process of a decision or order by the Accessibility Commissioner. The House of Commons approved these changes in November 2018. Disability activism continued, turning to the Senate committee on social affairs when it considered the bill in the spring of 2019. More amendments and of a more significant nature occurred there (Naef & Perez-Leclerc, 2019). Among these changes were: adding the deadline of 2040 by which Canada would be barrier-free; recognizing American Sign Language, Quebec Sign Language (Langue de signes québécoises), and Indigenous sign languages as the primary languages for communication by D/deaf persons in Canada; and, adding that multiple and intersecting forms of discrimination and marginalization must be taken into account in any relevant laws, policies, and programmes. When the amended bill returned to the House of Commons bill, it received unanimous support on the last day of sitting before the fall general election. The ACA came into force in July 2019.

DISABILITY AND THE HUMAN RIGHTS LANDSCAPE IN CANADA The ACA is the most recent and perhaps most significant outcome of disability activism for human rights in Canada. A human rights consciousness among people with disabilities and their families and allies goes back several decades, at least to the immediate aftermath of World War II, and the growing tendency by individuals and community organizations to express claims for public services and equal access to programmes in terms of citizenship, equality of opportunities, and social inclusion. With an increased presence in public affairs, disability grew as a salient civic category and multiple group identities, often rooted in medical diagnoses. Disability and human rights activism in Canada gained expression and influence through several social movements and political developments. These include parent-led community living activism since the 1950s, civil rights and women’s rights mobilization in the 1960s onwards, anti-discrimination human rights initiatives, and independent living and consumer advocacy in the 1970s (Murphy, 2016; Panitch, 2007; Prince, 2009). Furthermore, the entrenchment of a Charter of Rights and Freedoms in the Canadian constitution in 1982 granted equality rights and affirmative action programming specified for people with ‘mental and physical disability’. Domestically, human rights laws at the level of both the federal government and the provincial governments in Canada introduced provisions in the 1970s and 1980s, explicitly recognizing the rights of persons with disabilities against discrimination and instituting principles of reasonable accommodation. Where the Canadian Charter, as a constitutional document, governs relationships between the federal and/or provincial state and citizens, federal and provincial human rights laws as statutory documents address citizen-to-citizen relations and often in private sector situations. Other significant developments pertaining to the rights of people with disabilities included the Employment Equity Act 1986/1995, which identified persons with disabilities as a designated equity group, the Court Challenges Program, which offers funding to disability organizations and other equality rights groups under the Charter, and particular leading court decisions (Stienstra, 2020).

220  Research handbook on disability policy International disability policy developments in the United States and at the United Nations had a direct bearing on the growing rights consciousness of disability groups in Canada. The Americans with Disabilities Act represented a domestic example of possibility, at the same time as political opportunities were opening for Canadian groups to contribute in policy deliberations – such as to the UNCRPD. Sustained thinking and research by some national disability groups about a Canadians with disabilities law really began in the late 1990s and became the subject of lobbying federal political parties in the 2006 and subsequent general election campaigns (Prince, 2010). In 2010, after consultations with provincial and territorial governments, Indigenous self-governments, and disability organizations, Canada ratified the UNCRPD and, in 2018, gave accession to the Optional Protocol. In both cases, Canada was not an early adopter, following dozens of other countries including political federations such as Australia and Germany (Disabled World, 2020). Since the early 21st century, several provincial governments have enacted accessibility laws to remove attitudinal, physical, policy, and technological barriers in various domains of the public and private sectors. Overall, these provincial measures reflect and contribute to an evolving accessibility politics. Each of these legislative actions offered valuable public engagement experiences and advocacy lessons for activists in advancing a human rights agenda that expressly includes people with disabilities. This politics of accessibility builds on the legacy of efforts directed at anti-discrimination legislation, reasonable accommodation principles, and the limited scope of affirmative action programmes in Canada (Murphy, 2016; Stienstra, 2020). As Carey notes, ‘[t]he practices of rights are built on continuously shifting meaning systems that incorporate, and at times, conflicting, norms, values, and relational expectations’ (2009, p. 16). Experience with human rights laws revealed that complaints by people with disabilities were the main category of cases across virtually all jurisdictions consistently over many years. That human rights model relied heavily on individuals to launch complaints to seek redress for their specific circumstances and adverse treatment. These past efforts and experiences, similar to those in other countries (see Emens, 2012, on American disability law), together with the more recent provincial accessibility laws thus provided an important legal and political context for complementary action at the national level to address removing barriers to participation for people with disabilities on a more proactive and systemic basis.

A LIBERAL STATE AND THE ACCESSIBLE CANADA ACT Understandably, the ACA reflects the historical, political, and societal context in which it originates and resides. Core features of this context are the liberalism of Canadian society and its politics, the modest activism of Canadian governments, attention to individual and group rights in public policy, the federal nature of the governmental system, and an array of existing laws and regulatory agencies within which the ACA is situated. The Canadian approach to human rights and disability rights anchors in a dynamic amalgam of liberal political ideas and practices (Ignatieff, 2000). In a classical sense of liberalism, this approach gives emphasis to the self-development of individuals, a discourse of equal opportunities to meet one’s potential, protections for property rights, and state guarantees of formal equal rights of members of society under the law. In distinguishing between private and public spheres of life, a core idea of liberalism is that governments ‘impose legal controls

The Accessible Canada Act  221 on private action only for publicly agreed-to purposes and in accordance with due process of law’ (Wilson, 1980, p. vii). Contemporary aspects of liberalism include social conceptions of belonging and participation that connect personal autonomy with human agency that in turn links to societal accessibility. The individual citizen, specifically the disabled citizen, is an embodied individual, endowed with a bundle of capacities and limitations, embedded within a particular social environment. Self-development relates inextricably to economic, political, and social developments. Along with being a liberal democratic regime, Canada is a liberal welfare regime (Prince, 2018). Labour market status plays a major role in determining access and eligibility to social provisions. In large part, the Canadian welfare system is an amalgam of safety net (last resort/ residual welfare) programmes, as would be expected under a liberal regime model, and labour market (wage earner/social insurance) methods of programming. Public policies and social programmes place heavy reliance on personal responsibility and on the provision of services and benefits in the private and voluntary sectors. Indeed, at the interface between public policy and the domestic sphere, an implicit set of family policies make gender-based assumptions about male and female roles and the division of caring responsibilities, although some changes in this sphere are afoot (Rice & Prince, 2013). Likewise, minimal social protection characterizes limited coverage in support for housing, training, and disability insurance and comparatively modest investment in active labour market programmes to promote employment opportunities (see, for example, OECD, 2019, 2021). The widespread use of tax measures addresses various human needs and social issues and serves as a small political gesture by governments. In the field of income security policy, only a few universal income programmes exist; most of the field contains means- or needs-tested social assistance and other income-tested programmes through selective transfer payments and targeted tax measures or a basic reliance on employment-based social insurance programmes such as the Canada/ Quebec Pension Plans, Employment Insurance, and workers’ compensation. For the most part, social insurance programmes provide modest levels of income support or earnings replacement (Béland, Marchildon & Prince, 2019). Social assistance today remains the dominant programme in provincial income policy for low-income individuals and families, and people with disabilities are the largest group of people dependent on these last resort programmes. Benefit levels tend to be meagre, stigmatizing to receive, and saturated with complex rules and bureaucratic surveillance (Prince, 2015). In the ACA there are two different conceptions of human rights. One is the familiar liberal individualism expressed as universal principles of rights to human dignity, self-determination, and the equal worth of all people. The actual universality of these human rights principles in practice is tempered by the constitutional reality that Canada, like Australia, the United States, and some other nation states, is a federal political system with a division of sovereign powers between national and sub-national orders of government. Thus, ‘the purview of matters coming within the legislative authority of Parliament’ largely determines the scope and character of the ACA. The rights to accessibility are therefore federal rights in that they apply to federally regulated entities and not to sectors and entities under provincial jurisdiction, which, significantly, covers most of the economy. The legislation further recognizes the division and overlapping of powers between orders of government by authorizing the lead Federal Minister to work with provinces and territories in coordinating policies and plans on accessibility. Beyond this notion of liberal individualism, the ACA conveys a social group-based orientation to disability rights. In the preamble of the legislation is a clear recognition of the historic

222  Research handbook on disability policy and still ongoing barriers and disadvantages faced by people with disabilities as a category of citizens. There is a clear recognition of different group identities within the general population of people with disabilities, including D/deaf people, Indigenous peoples with disabilities, and people with episodic disabilities, among others. Attention to certain group identities and group rights features in Canadian political culture and history, and can be found in other federal and provincial laws, for example, employment equity programmes and human rights codes, in the Charter of Rights and Freedoms, and in the original 1867 constitutional act founding Canada. It is worth noting that this focus on group identities and group rights does not mean that a minority group model of disability prevails in the Canadian context. Undeniably, discrimination, prejudice, neglect, and exclusion are lived experiences. Generally, though, the group rights of persons with disabilities pursued and promoted are equality rights and entitlements to affirmative action programmes to advance full citizenship and mainstream social inclusion. As with other human rights instruments, the ACA is a direct exercise of state power. The ACA approaches disability as a public policy issue of barriers and obstacles to people living with impairments, a perspective long expressed by disability organizations and advocates, and some academics. Under the legislation, disability means ‘any impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment – or a functional limitation – whether permanent, temporary or episodic in nature, or evident or not, that, in interaction with a barrier, hinders a person’s full and equal participation in society’. The ACA defines barrier in broad and social terms. It means anything – including anything physical, architectural, technological or attitudinal, anything that is based on information or communications or anything that is the result of a policy or a practice – that hinders the full and equal participation in society of persons with an impairment, including a physical, mental, intellectual, cognitive, learning, communication or sensory impairment or a functional limitation.

The vision of a barrier-free Canada, which underpins the act, is not to be confused with the idea of negative rights and liberty as the absence of state action or the avoidance of state restrictions on personal choices and activities. Instead, the ACA is an expression of positive state action and the belief that liberty and equality of opportunity for all citizens requires a judicious exercise of governmental authority. The ACA is a notable elaboration of the federal government’s role in promoting rights to access and inclusion. As discussed in the next section of this chapter, the ACA sets out a series of rights along with obligations on federal state organizations and federally regulated entities in the economy. The main mechanism is through the identification, removal, and prevention of barriers that interfere with or inhibit the ability of people, and particularly people with disabilities, to participate as equal members in society. In other words, the removal of various societal barriers is a reasonable expectation and a social responsibility, a way to advance accessibility, participation, and inclusion. When introduced in 2019, the ACA entered a policy and administrative space of parliamentary cabinet government already occupied by an assortment of laws, portfolios, regulatory agencies, and complaints processes. The scope of responsibility for the Minister answerable for the new law consequently extends to all matters relating to accessibility over which Parliament has jurisdiction and not assigned to any other Minister or department, board, or agency of the Canadian government. For example, the Canadian Human Rights Act and the Employment Equity Act address matters of workplace accommodation under federal jurisdiction (Stienstra,

The Accessible Canada Act  223 2020). Other federal laws that deal with banking, broadcasting, telecommunications, and transportation have accessibility standards and regulations. Design considerations for the ACA, as stated in government documents, were for it to complement laws that already exist to protect the human rights of people with disabilities; to build on existing federal accessibility rules; and, to do so, by adding a proactive and systemic approach for identifying, removing, and preventing barriers to accessibility. This design approach recognized that ‘most human rights commissions have had to concentrate their scarce resources on dealing with specific complaints. As a result, the persistent patterns of discrimination in the society and the more elusive but potentially highly damaging effects of institutionalized prejudice tend to escape public exposure and remediation’ (Manzer, 1985, p. 174). This systemic approach is to take account of ‘the multiple and intersecting forms of … discrimination faced by persons with disabilities’. In addition, the Minister may initiate, recommend, implement, and promote policies, programmes, and projects in relation to matters relating to accessibility as well as make grants and contributions in support of such programmes and projects.

FIVE CATEGORIES OF HUMAN RIGHTS Every statute on human rights has a categorical composition of entitlements and remedies. Each law has a make-up of different types of rights and a configuration of the relative detail and priority of those rights and their enforcement. In the case of the ACA, it contains varying elements of five broad categories of human rights. These are legal, political/democratic, cultural, social, and economic rights. Legal and political/democratic rights are among the oldest and most fundamental of freedoms, whereas some observers consider cultural, social, and economic rights as newer and less certain claims. In international law, cultural, social, and economic rights ‘are subject to the doctrine of “progressive materialisation” [or progressive realization] to the maximum of a state’s available resources’ (Series, 2019, p. 74). On legal rights, the ACA reflects its embedded nature within established laws and regulations. First, by noting that the Canadian Charter of Rights and Freedoms ‘guarantees the right to the equal protection and equal benefit of the law without discrimination’. Second, by adding that nothing in the act ‘lessens the existing legal rights of people with disabilities under the Canadian Human Rights Act’. This is a non-derogation clause to assure disability groups that the new act does not take away or abrogate any rights already recognized in human rights law. Further, on matters of rules of fairness and due process, the ACA establishes the role of Accessibility Commissioner, located within the Human Rights Commission, to receive and investigate accessibility complaints under the legislation. The Accessibility Commissioner is to deal with such complaints ‘as informally and expeditiously as the circumstances and consideration of fairness and natural justice permit’ (clause 109). In working with other federal government organizations, the Commissioner is to ensure mechanisms are in place among these organizations ‘for the efficient and expeditious referral’ of complaints that fall under their respective jurisdictions. These provisions on investigation, deliberation and negotiation, and adjudication of claims are classic elements of legal rights. On political/democratic rights, the ACA is innovative, going well beyond freedom of expression, freedom of assembly, and freedom of association as traditionally understood and

224  Research handbook on disability policy practised. The legislation grants a helpful package of participatory rights to people with disabilities and some other groups: ● a right to consultation on several specific processes and activities; ● a right to information of various kinds and in alternate formats; and ● a right to direct representation on a standards development organization. Around consultation processes, the ACA specifies several duties for regulated entities and other organizations, and thus rights for persons with disabilities. A regulated entity has a duty, for example, to consult with persons with disabilities in the preparation of its accessibility plan and every updated version of its accessibility plan. As well, a regulated entity must set out the way it consulted with persons with disabilities in the preparation of the plan and then to make the plan available on request in a format prescribed by regulations. When preparing an accessibility plan or updating one, every regulated entity must consider certain principles set out in the act. These principles, set out in clause 6, and which comprise in effect a disability inclusion lens, include ensuring people with disabilities are involved in the development and design of laws, policies, programmes, and services; treating all persons with dignity; and aiming to achieve ‘the highest level of accessibility for persons with disabilities’. In addition, a regulated entity must establish a process for receiving feedback about the manner of implementing its accessibility plan and the barriers encountered by people that deal with that organization. Moreover, they must publish a description of this process and notify the relevant federal regulatory body of the publication. In the preparation of progress reports, once again, a regulated entity has a statutory duty to consult with people with disabilities, to document the manner of that consultation and the information received by way of feedback, and to make these progress reports available on request. Finally, when an independent review of the provisions and operation of this Act is conducted, the person or persons conducting the review have a duty to consult ‘the public, persons with disabilities, organizations that represent the interests of persons with disabilities, regulated entities and organizations that represent the interests of regulated entities’. According to draft ACA regulations, each regulated organization must ensure their accessibility plans, progress reports, and feedback processes are in ‘clear, simple and concise language’. Organizations must also provide, upon request, certain alternate formats of accessibility plans and progress reports. These alternate formats are print copies, large print, braille, audio format, and electronic formats compatible with adaptive technologies of people with disabilities. In this context, then, people have a right to a plan or report in an alternate format if they ask for it. The ACA gives considerable attention to cycles of public reporting and a right to transparency and information. The Canadian Accessibility Standards Development Organization (CASDO), a new agency created under the legislation, is responsible for developing and revising accessibility standards that apply to designated federally regulated sectors. The terms of reference and the name of members of every committee established by the chief executive officer of CASDO to develop and revise standards must be available to the public. Every standard recommended by the Standards Organization to the Minister must be available to the public. The CASDO must submit an annual report to the Minister who must ensure presentation of the report to each House of Parliament (the House of Commons and Senate) within the first 15 days on which that House is sitting. Likewise, the Accessibility Commissioner, who shares responsibility with other federal regulatory bodies for administration and enforcement,

The Accessible Canada Act  225 must submit an annual report to the Minister and a copy to the Minister of Justice, and each House of Parliament must receive that report. The Chief Accessibility Officer, another role newly created under the ACA, has similar obligations to produce and circulate an annual report. Embracing the disability rights movement principle of ‘nothing about us, without us’, the ACA states that ‘persons with disabilities must be involved in the development and design of … structures’. To that end, the legislation sets out a right to representation regarding the membership on the board of directors for CASDO. This political right has three statutory aspects: that most board members must be persons with disabilities; that the board members must be representative of the diversity of disabilities; and that the board must have directors who are representative of the diversity of Canadian society. Reflecting demands by disability groups for meaningful democratic engagement in regulation making, this package of political rights evidently intends to enhance the presence and voices of people with disabilities and thus their influence in standard-setting organizations and processes. Cultural rights given legal recognition relate to community languages, the right to access and participate in artistic and communication mediums, respect for cultural diversity, and raising public awareness of barriers and the importance of accessibility standards and design. On language rights, the legislation refers to barrier-free communication that includes the use of American Sign Language, Quebec Sign Language (Langue de signes québécoises), and Indigenous sign languages. The ACA recognizes these as primary languages of D/deaf people in Canada, essential to participate equally in social and economic affairs (Snoddon & Wilkinson, 2019). Removing and preventing barriers of access to broadcasting and telecommunication sectors are significant public spaces of federal jurisdiction. The legislation also establishes a new annual event, National Accessibility Week, for celebrating the contributions of people with disabilities and for promoting inclusion and accessibility in communities across the country. Through raising public awareness, one aim is to foster inclusive norms and to shift societal attitudes and behaviours in a positive direction informed by a human rights perspective (Stienstra, 2020). Over time there will likely develop an ongoing series of conversations in different formats between accessibility policy makers and numerous publics. Economic and social rights feature less prominently in the ACA because, in a fundamental sense, it is framework legislation establishing a machinery of governance arrangements and authority relationships. One of the principles stated in the ACA is that ‘everyone must have the same opportunity to make for themselves the life they are able and wish to have’. Future standards and regulations could well bear on economic and social policies and programmes. The significance of economic rights will be found in accessibility plans and any rules developed, within federal jurisdiction, to remove and prevent barriers in workplaces and employment services, the built environment, transportation networks (airlines, marine, rail and bus carriers that operate cross-provincial, territorial or international borders), and the procurement of goods, services, and facilities. Matters of labour mobility, fair wages, equal pay for equal work, safe and healthy working conditions, workplace accommodations, and paid sick leave are all addressed in other federal (and provincial) laws, such as human rights, labour codes, and employment standards legislation. In the same way, social rights are not a primary or explicit focus of the Canadian accessibility law. Entitlements to federal programmes and services for children and families, the unemployed, the elderly and retirees, college and university students, immigrants, homeowners and renters, people with significant disabilities, veterans, and additional constituencies are based in

226  Research handbook on disability policy other laws, policies, activities, and intergovernmental agreements. In the Canadian federation, the primary responsibility for many areas of social policy is with provincial governments including early childhood education, primary and secondary education, health care, and various disability-related supports and services. Thus, the ACA is essentially silent on social rights in the Marshallian sense of public programmes and income benefits for a fuller measure of equality and citizenship in the national community (Prince, 2016). However, the legislation does convey as a principle the full acceptance of people with disabilities as members of society, participating without barriers in public spaces and public services. Overall, the ACA is about more than simply enacting old rights in new legislation. It exhibits some distinctive and novel qualities in its statutory provisions on human rights, notably in the categories of political/democratic rights and cultural rights.

LIKELY EFFECTS OF THE ACA ON DISABILITY RIGHTS AND ISSUES ‘To formulate a law is essentially a job of constructing a setting in the sense of building background assumptions and limits that will persist over time and influence the quality of political acts’ (Edelman, 1964, pp. 103–104). So, what are the likely effects of the ACA on policies and practices, on popular understandings of disability, and on disability movement organizations? How might relations of power and influence be reshaped? The human rights for people with disabilities formulated in this law will be influenced by, operate within, and contribute to a dynamic environment of supporters, sceptics, and spectators. With such recently enacted legislation, this assessment must be, by necessity, a preliminary review. Two kinds of effects are considered here: substantive elements and symbolic meanings. First, the law intends to be consequential to citizenship and government–society relations. As a statutory law governing rights and duties within federal jurisdiction, substantive effects relate to operational resources and administration, and compliance and enforcement activities that aim at material changes in behaviours and practices in social contexts. Second, as symbolic action, the ACA is a statement of the socioeconomic value of accessibility and inclusion as well as a political affirmation of the inherent worth of a group of people who historically, and still today, are disadvantaged within the general population. Substantive Elements and Impacts The ACA constructs a practical governance setting by creating organizational roles and agencies with new mandates within the federal public service; establishing new lines of authority and obligations along with accountability and reporting relationships; specifying rules and authority for setting standards and making regulations; enabling the provision of certain services; and authorizing a range of administrative penalties. As noted earlier, the ACA further constructs a governance setting by applying and even extending several categories of human rights to accessibility policy and by legitimizing modes of access for disability representatives and other interests to this legislative field. New forms of information and learning, and no doubt administrative capacity building, will result from the processes for developing, evaluating, and revising accessibility plans. For provincial jurisdictions still without accessibility legislation, the ACA may influence local political agendas and

The Accessible Canada Act  227 policy discussions; and, for jurisdictions with such laws, the federal legislation raises issues of coordination and possibilities for sharing experiences and mutual learning. Substantive impacts of legislating accessibility go beyond rulemaking, as is apparent in the multifunctional mandate of the CASDO. Indeed, there is significant potentiality in the mandate. In addition to developing and revising standards, and its representative function of people with disabilities, the organization has advisory, research and information, funding, and administrative powers. The Standards Organization can licence any patent, copyright, industrial design, or trademark that comes from their work. In relation to standards established, the organization can provide information, products, and services. To support the focus on systemic and proactive action, the organization can promote, support, and conduct research into the identification and removal of barriers to access for people with disabilities and into the prevention of new barriers. The organization can also disseminate information on best practices regarding barrier removal and prevention. On financial and management matters, the organization may make grants and contributions, charge fees for information, products or services provided, and manage property rights it holds or controls. These multiple functions will influence the CASDO’s workload and organizational relations within the federal government and with external stakeholders. Responsibility for the law’s administration and compliance and enforcement lies with the newly formed role of Accessibility Commissioner and existing federal regulatory agencies and tribunal bodies. The recently formed Council of Federal Accessibility Agencies comprises the Accessibility Commissioner along with the Canadian Human Rights Commission, Canadian Human Rights Tribunal, Canadian Radio-television and Telecommunications Commission, Canadian Transportation Agency, and the Federal Public Sector Labour Relations Employment Board. Central mechanisms to encourage compliance by public and private organizations with the legislation are the procedures around the development of accessibility plans, feedback reports, and progress reports by regulated entities. Enforcement mechanisms include accessibility inspections, mediation, and publication about known barriers, and monetary penalties, which could range from small fines for minor infractions to a maximum of $250,000 for a large organization that commits a serious violation and perhaps is a repeat offender. The long-term aim is to provide across the country greater and more consistent accessibility in sectors under federal jurisdiction. In the lead-up to introducing the ACA and since enacting it, federal budgets have announced a series of investments and measures in support of an accessibility and disability inclusion agenda. The 2018 federal budget, for example, heralded an investment of $290 million over six years to implement the Act and to ensure the federal government leads in accessibility improvements for persons with disabilities. In the 2019 budget, the Canadian government declared its intention to become a model employer for workplace accessibility and set a target and timeline of hiring at least 5,000 people with disabilities in the federal public service over the next five years. Additional funding also came for identifying, removing, and preventing technological barriers in federal government workplaces. Other investments are to support employment for persons with intellectual disabilities, visual impairments, and autism spectrum disorders; and to enhance access to public libraries for people with a print disability (learning, physical, or visual condition that prevents a person from reading conventional print). The 2021 budget provides additional funding of $100 million over two years, to triple funding for the Enabling Accessibility Fund and support not-for-profit organizations, women’s shelters, child care centres, small municipalities, Indigenous organizations, territorial govern-

228  Research handbook on disability policy ments, and businesses to help offset the costs of renovations, retrofits, and accessible technologies in workplaces (Canada, 2021, p. 235). Other recent federal government measures aim at improving access to tax benefits, income supports, savings plans, and education funding for various groups of people with disabilities. All these budgetary and programmes decisions illustrate the connection between human rights, disability, and public policy. Symbolic Meanings and Impressions Aside from mandates and statutory instruments, a law both contains and communicates meanings and social ideas. It does so by declaring fundamental objectives, which a political community specifies and which a population can identify with and endorse (Breton, 1984; Edelman, 1964). Batavia and Schriner (2001, p. 693) make this point in reference to the Americans with Disabilities Act (ADA). They write that the ADA indicates that a major goal of disability policy in this country is to ensure the inclusion of people with disabilities in the mainstream of our society, and that people with disabilities are to be treated as first-class citizens. Using the ADA as philosophical statement reflecting our national disability provides guidance and is valuable to keep us focused on ultimate policy goals.

Of course, some objectives and the background assumptions or social norms underlying them may be consensual while others are controversial, evoking a range of attitudes to disability and responses by courts, employers, and legislatures (Emens, 2012). As historic and innovative pieces of legislation, the ADA (Davis, 2015) and the ACA have elements of both qualities. The vision of the ACA is proactively to eliminate barriers – through developing standards, undertaking compliance and enforcement measures, and promoting culture change – and to ensure greater opportunities for Canadians with disabilities. To be proactive and systemic in tackling barriers, rather than rely on individuals to launch cases of complaints, signals a more respectful and supportive relationship between people with disabilities and government. For some people a cognitive effect of this legislation may be a more positive sense of self as a citizen and a more favourable and optimistic perception of government (Breton, 1984; Mettler, 2005; Prince, 2009). As already discussed, for the board membership of the standards organization a majority of directors are people with disabilities. This represents a transformation in the character of regulatory governance arrangements in the federal government that relate to disability rights and public policy issues. The ACA’s textual language is legalese to be sure; it is also a form of political vocabulary. One that clearly imparts a human rights discourse of individual dignity, equality and opportunity, accessibility and inclusion, and a recognition and acceptance of differences by the state. There is also a democratic message in the commitment to increase the presence and voice of people with disabilities in the implementation, monitoring, and subsequent evaluation of this legislation. In the words of an experienced Canadian disability activist The motto, ‘Nothing about us without us’ is a familiar phrase that has been uttered far and wide by the disability rights movement for many years. Increasingly, we expect to be viewed in a different light, not merely as one more group of stakeholders but to have a preeminent place at any table where policies, programmes or legislation is being considered. We expect increased representation in all decision-making bodies that affect our quality of life. (Rae, 2020, p. 92)

The Accessible Canada Act  229 These words and the broad conception of barriers included in the law connect to models of disability rooted in the fluid and dynamic interconnections between bodies and environments; socio-political models embraced by rights activists and policy advisers and in turn used to frame reforms and to evaluate governmental responses (Fougeyrollas & Grenier, 2018; Sabatello & Schulze, 2013). What is in a name? For years before the legislation occurred, disability groups and others spoke of the need for a Canadians with disabilities act, no doubt influenced by the title of the American legislation (Prince, 2010). When, however, the Canadian bill appeared the official title did not refer to disability or to Canadians with disabilities. This was a deliberate choice, one favoured by the Federal Minister for Disability, who did not want the law to seem a selective approach informed by identity politics. Instead, the title strives for a comprehensive framing of the legislation. The core ideas are accessibility, equality, and a barrier-free Canada (Naef & Perez-Leclerc, 2019). The message is that the law will benefit the general population and society-at-large, not a minority group of people living with disabilities. It is not about special treatment or reverse discrimination but equal and fair treatment under and by the law. The ACA name conveys the universality of human rights and may help mobilize political backing and general community support. Basic human rights, Mandle explains, ‘are universal in two senses. First, every human being is entitled to enjoy these rights. Second, everyone has a duty of justice to respect these rights. That is, human rights generate duties that apply universally, although these duties may be of different strength with respect to different people’ (2006, p. x). The language of fundamental human rights, expressed in United Nations conventions, the Canadian Charter of Rights and Freedoms, and federal and provincial human rights codes, and high court decisions help shape public narratives and political debates over disability policy and programming.

CONCLUSIONS This chapter examined a national law in one country, the Accessible Canada Act, which represents a distinctive and recent legislative initiative to advance the human rights of people with disabilities. While a case study, the analysis has implications for international debates on disability rights and for disability activism (Berghs et al., 2020). This law, and similar ones in other jurisdictions, are an important element in the larger agenda of reducing societal barriers, transforming cultural beliefs, establishing meaningful opportunities to participate in the economy and society, and providing essential public services. National and sub-national disability laws build on past legislative and policy efforts that address anti-discrimination, reasonable accommodation, and affirmative action. In the context of industrial nations, these are among the distinctive characteristics of the Canadian welfare state as a regime-type. Comparative studies could shed light on the evolving content of disability laws, the scope of citizenship rights enacted, implementation and enforcement mechanisms adopted, and their symbolic and substantive effects. Disability interest groups and movement coalitions actively mobilized, participating in the consultation and legislative processes for the ACA, and they successfully influenced the framing and the final text of the law in some notable ways. Other key actors who shaped this rights legislation were business and industry interests, recommendations from federal government officials, parliamentarians, and strategic choices by cabinet ministers. The institu-

230  Research handbook on disability policy tional setting of federal jurisdictional powers and pre-existing human rights codes, provincial accessibility laws, and other public policies undoubtedly shaped the scope and character of the ACA. As the latest effort by the Canadian government in shifting public understanding of disability, the ACA contributes to the enduring interaction and perennial tension among the medical, charitable, economic, social, and other working models of disability and equality. The analysis described how the legislation contains components of five broad categories of human rights: legal, political/democratic, cultural, economic, and social rights. In modern politics generally, and in disability rights politics more specifically, divergent interpretations and levels of interest group support connect to each of these rights categories, producing contentious debates over the pace, nature, and scope of policy change (Mayerson & Yee, 2001). Claims making for human rights expresses many ideas and arguments: compensation and restitution, needs, equality, diversity and difference, merit and deservingness, and contractual entitlements grounded in social insurance. All this makes disability rights, as an idea and set of discourses, highly relevant and hotly contested in social policy, litigation, and governing (Vanhala, 2014). There is no reason to assume that accessibility legislation will be immune to political vicissitudes. The ACA could be among the most proactive and systemic human rights approach to date in tackling exclusion and stigma and in advancing participation and inclusion. Future empirical research could document actual achievements and lessons about challenges and opportunities for disability rights. Many of the details that will condition the law’s effectiveness will come through the actual standards and regulations, the resources invested in this accessibility regime, the exercise of discretionary authority by officials, and the interplay of public and private forms of power in compliance and enforcement. While there are often linkages, there are also differences between the recognition and attribution of rights and the realization and actualization of those rights. Disability organizations and activists consequently have a continuing stake in the implementation of the ACA, and the law offers several mobilization opportunities for political engagement and policy advocacy. One is on matters of identifying and removing barriers to access and preventing any new barriers in areas under federal responsibility. The development of standards and the monitoring of accessibility plans are structured spaces for human rights activism and community action. Another mobilization opportunity centres on the newly established National Accessibility Awareness Week and yet another is the periodic parliamentary and independent reviews of the law, offering further occasions for public debate and policy evaluation and making rights claims for equality.

REFERENCES Accessible Canada Act S.C. 2019, c.10 https://laws.justice.gc.ca/eng/acts/A-0.6/page-1.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Batavia, A. I., & Schriner, K. (2001). The Americans with Disabilities Act as engine of social change: Models of disability and the potential of a civil rights approach. Policy Studies Journal, 29(4), 690–702. Béland, D., Marchildon, G. P., & Prince, M. J. (Eds.). (2019). Universality and social policy in Canada. University of Toronto Press. Berghs, M., Chataika, T., El-Lahib, Y., & Dube, K. (Eds.). (2020). The Routledge handbook of disability activism. Routledge. Breton, R. (1984). The production and allocation of symbolic resources: An analysis of the linguistic and ethnocultural fields in Canada. Canadian Review of Sociology and Anthropology, 21(2), 123–144.

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232  Research handbook on disability policy Snoddon, K., & Wilkinson, E. (2019). Problematizing the legal recognition of sign languages in Canada. The Canadian Modern Language Review, 75(2), 128–144. Stienstra, D. (2020). Disability rights (2nd edn). Fernwood Press. Vanhala, L. (2014). Meaning frames, opportunity structures, and rights in the Canadian disability movement. In M. Smith (Ed.), Group politics and social movements in Canada (pp. 305–331). University of Toronto Press. Wilson, J. Q. (1980). Introduction. In J. Q. Wilson (Ed.), The politics of regulation (pp. vii–xii). Basic Books.

18. Narrative 5: Locked-in, locked-down: lived experience of a non-speaker Tim Chan

“No man is an island”, according to John Donne. However, for an autistic non-speaker like me, social isolation is a constant companion. My travels with autism officially started with my diagnosis with autistic disorder at three years old, with significant delays in all areas of development. Coupled with hypersensitivities, dyspraxia, information processing issues, high anxiety levels and lack of body awareness, my earliest memories were a huge jumble of confusion, with numerous challenges in figuring out my world. Furthermore, as I was constantly bombarded with overwhelming sensations, my solace laid in seeking refuge in repetitive activities like spinning toys, sand and water play. I am a visual thinker and until the age of six was unable to understand that the sound people made stood for language. Moreover, with a fragmented body map with limited ability in coordinating its various parts, I am also challenged in initiating and sustaining fine motor skills. Despite intensive interventions starting from the age of three, I lagged in the ability to do what was expected of children my age, including speech and in undertaking activities independently. Hence, it was no surprise that I was labelled severely autistic and intellectually disabled. The problem has another name, locked-in syndrome, with which I was later diagnosed at 14. Basically, this translates into an intact mind in a recalcitrant body that won’t/can’t action my intentions. This diagnosis confirmed what I’ve always known; that I had the potential to learn and understand the world. It took years for things to change, with my mother’s commitment to provide me with the best chance of living a full and productive life, and with an individualised programme tailored to my learning needs. Given the necessary support and encouragement to learn at my own pace, the tide began to turn. I started to master language around six. With better understanding of the world and people, I gradually enjoyed participating in new experiences. Another momentous stepping-stone came in learning to type with support, or facilitated communication (FC), at the age of nine. FC opened many doors, including the ability to “talk” to people with a voice-generating device. I became able to connect with people, participate more fully in social activities and do things most people take for granted like go to mainstream school, to emerge into a new life as a person in my own right. The COVID-19 pandemic has ironically provided a window for people to see the world with different eyes. Because of lockdown, social isolation has become part of the new normal. As people begin to understand the effects of being cut off from social contact with mental wellbeing issues, I have experienced more acceptance. Neighbours would come up to greet me and listen to my typed answers, when we went for walks. I’m seeing that inclusion derives from the ability to empathise and identify with people with differences. When life forces us to pause and take stock, we become more open to acknowledging our vulnerability, as well as other people’s. When we are ready to face and accept our predicament, we can choose to act according to our best intents. Long may this acknowledgement continue! 233

19. From international standard to national practice: the role of national disability institutions in making the Convention on the Rights of Persons with Disabilities a reality in South and Central America Renata Anahí Bregaglio Lazarte, Paula Lucía Camino Morgado and Renato Antonio Constantino Caycho

INTRODUCTION The Convention on the Rights of Persons with Disabilities (CRPD) drastically changed the way human rights law and policy interact with persons with disabilities. The Convention’s ambitious approach to align legal standards to the social model of disability makes enforcement quite a complex task. Recognizing this, the treaty lays out a strategy for national implementation and monitoring in its 33rd article, creating an obligation for States to create or designate institutions in charge of making CRPD a reality. Article 33 is unusual in human rights law insofar as it contains legal obligations with clear policy implications. The Article establishes that States must (i) designate one or more focal points for CRPD matters relating to the implementation and (ii) implement a framework for the protection, promotion and monitoring of CRPD implementation. At the academic and international levels, key characteristics of the focal point and framework have been identified. Academic authors including de Beco (2011), de Beco and Murray (2014), de Beco and Hoefmans (2013), Aichele (2018) and Manca (2017) have argued that focal points should be placed at high levels of government, have a sufficient and set budget, include persons with disabilities in key positions, be independent and have access to all branches of the executive government. At the international level, the CRPD Committee, the Office of the High Commissioner for Human Rights (OHCHR) and the European Union Agency for Fundamental Rights (FRA) have echoed similar standards, although placing greater focus on the independence and participation of persons with disabilities. However, most of the literature has been crafted with a European context in mind. Thus, the proposed standards seem difficult to apply in the complex and changing realities of the Global South. As such, implementing the CRPD heightens the need to bridge the gap between human rights theory and public policy implementation that will be highlighted throughout the following sections of this chapter. In this context, the chapter proposes a critical look at CRPD implementation and monitoring frameworks in Latin South and Central America (LSCA).1 We selected this set of countries because they share similar legal standards, especially in terms of human rights standards derived from the Inter-American Human Rights System, a common history and similar traits in the way civil society organizes. They also share similar challenges regarding democracy, rule of law and institutionality. Because of these shared characteristics, we posit that LSCA 234

From international standard to national practice  235 countries will face similar challenges in implementing Article 33, which can be differentiated from those faced in other regions. Our analysis begins with a brief overview of the social model of disability and the framing of the CRPD to understand the need for implementation, monitoring and participation, to then look at the characteristics of the obligations derived from Article 33 CRPD, in terms of what has been said by authors and human rights treaty bodies. With this theoretical framework, we critically assess the mechanisms formally designated in 17 LSCA countries. In doing so, the chapter analyses whether the obligations derived from Article 33 CRPD are clear and attainable. At the same time, we evaluate whether there is a distinct framework and focal point in each country; the role that Disability Councils, a common arrangement in LSCA, play in this structure; and the role that the participation of persons with disabilities and disabled person’s organizations (DPOs) has – or has not – played in implementation and monitoring. Throughout the chapter, we also will reflect on the CRPD Committee’s role in providing guidelines to States on these matters and the difficulty of implementing the CRPD in a Global South context.

1.

A BRIEF OVERVIEW OF THE SOCIAL MODEL OF DISABILITY AND THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES MODEL

The social model of disability, recognized in Article 1 CRPD, holds that disability is not inherent in a person, but rather is in society (Oliver & Barnes, 2012; Palacios, 2008).2 From this perspective, the role of society is not to cure the person with a disability, but to tear down sociocultural and legal barriers that are disabling. This notion of disability is transformative in that it places the onus of inclusion on society as a whole, and not on persons with disabilities. It is an idea that is deeply rooted in the framing of the CRPD, and that illuminates the primordial role that persons with disabilities had in the discussions that led to the treaty (Sabatello & Schulze, 2013). It also informs the ideals of autonomy, full participation and inclusion that inspired the redaction of articles regarding legal capacity and political participation, as society must remove those disabling barriers that prevent persons with disabilities from entering the government spaces. In LSCA countries, the CRPD, as other human rights treaties, has a fundamental normative value. Because almost all of these countries adopt the system of automatic incorporation of treaties into national law (Shelton, 2011), human rights treaties become domestic law upon ratification.3 As such, all LSCA countries have ratified the CRPD and attached supra-legal, constitutional or supra-constitutional value to it. This means that the CRPD has a higher legal standing than Disability Acts and other regulations and, as such, these should all be interpreted in accordance with the CRPD. The table below illustrates the legal hierarchy of the CRPD in the countries under study, and the date of its ratification. This provides a powerful tool for civil society since, theoretically, a person can claim the direct application of treaty norms when domestic law is not aligned with international human rights standards (Shelton, 2011). For example, the Mexican Supreme Court has ruled three Acts as unconstitutional since they did not go through a consultation process with DPOs (Mexico Suprema Corte de Justicia de la Nación, 2016, 2017, 2018). The CRPD has also provided a framework for several changes regarding legal capacity in LSCA countries such as Argentina, Brazil, Colombia, Costa Rica and Peru. The CRPD, its impact and its influence

236  Research handbook on disability policy Table 19.1

Legal standing of CRPD per country under study State

CRPD Ratification status and year

CRPD Legal hierarchy

Argentina Bolivia Brazil Chile Colombia Costa Rica Ecuador El Salvador Guatemala Honduras Mexico Nicaragua Panama Paraguay Peru Uruguay Venezuela

2008 2009 2008 2008 2011 2008 2008 2007 2009 2008 2007 2007 2007 2008 2008 2009 2013

Constitutional Supra-constitutional Supra-constitutional Constitutional Constitutional Supra-legal Supra-legal Supra-legal Supra-constitutional Supra-legal Constitutional Constitutional Constitutional Supra-legal Supra-constitutional Constitutional Constitutional

have made it an outstanding tool for persons with disabilities when fighting for their rights. In this struggle, the mechanisms of implementation and monitoring acquire an important relevance.

2.

THE DUAL IMPLEMENTATION AND MONITORING MECHANISM DERIVED FROM ARTICLE 33 OF THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES

Article 33 of the CRPD is unusual among human rights treaties, insofar as it creates a specific obligation for State parties to build or assign national institutions or mechanisms to implement and monitor the convention. It creates two independent obligations for State parties: (i) designating one or more focal points for the implementation of the CRPD (that we will call ‘implementation mechanism’); and (ii) designating an independent mechanism to monitor the aforementioned implementation (that we will call ‘monitoring mechanism’). This division between the implementation and monitoring functions is crucial in establishing a control mechanism for enforcement in each State: because functions are divided, and there are checks and balances between institutions (Aichele, 2018; Hoefmans, 2020). The system is also noteworthy with regards to other human rights treaties. De Beco and Hoefmans have convincingly argued that this complex structure responds precisely to the paradigm change described in the previous section, since to correctly implement the CRPD, government institutions will have to overhaul the way they conceive their interactions with persons with disabilities (2013; see also Hoefmans, 2020). A third obligation runs parallel to the previous two: the obligation to meaningfully include persons with disabilities in the monitoring process. This follows a key political principle in disability human rights law: the idea that nothing in the disability rights fields should be created

From international standard to national practice  237 without including persons with disabilities. In the following sections, we will develop these three obligations as the theoretical framework from which we can assess disability institutions in LSCA countries. In doing so, it is important to keep in mind that, as we will note throughout the text, the CRPD Committee and other human rights bodies have given little guidance on the expected structure of the said mechanisms. 2.1

The Implementation Mechanism Derived from Article 33.1 CRPD

The first key element of Article 33 is the obligation to designate or create a focal point for the implementation of the CRPD. This obligation fulfills a dual purpose: (i) it guarantees a cohesive national policy on disability matters; and (ii) it assigns a clear coordination/promotion responsibility to a particular institution or person, creating an incentive for fulfilment (de Beco & Hoefmans, 2013; Mental Disability Advocacy Center (MDAC), 2011; OHCHR – Europe Regional Office, 2014). It is important to note that while Article 33.1 aims to ensure the implementation of a new treaty, it does not require State parties to create new institutions within their organic structures. On the contrary, any existing institutions and coordination mechanisms for public policy regarding disability can and should be repurposed to work towards the CRPD implementation (de Beco & Hoefmans, 2013, p. 26; Manca, 2017, p. 595; OHCHR, 2009, para. 24; OHCHR – Europe Regional Office, 2014, p. 13). Given that the Article establishes an open-ended obligation, a State party can decide whether to create or designate an implementation mechanism that is either an individual public official, a single government entity, or a sum of multiple government entities (a framework), as long as there is one leader within the multiplicity of actors (OHCHR, 2009, para. 24). Despite the broad configuration of this first obligation, the UN OHCHR has recommended that State parties should place persons or organisms in charge of implementation in all or most departments, and at all levels of the state apparatus (Aichele, 2018; Manca, 2017; OHCHR, 2009). These organs could coexist with a coordination organism within a government office (i.e. the Presidency, Cabinet, or similar offices), or in the Ministries of Justice or Human Rights (de Beco & Hoefmans, 2013; OHCHR, 2009). Regardless of the specific configuration of the implementation mechanism, authors and international organizations agree on the importance of ensuring that the role does not fall on Ministries related to Health, Wellness or Special Education, as this would reinforce foregone ideas of disability as a purely medical construct (de Beco & Hoefmans, 2013; Manca, 2017; OHCHR, 2009). 2.2

The Monitoring Mechanism Derived from Article 33.2 CRPD

The second obligation derived from Article 33 is to designate a monitoring framework that allows for the promotion, protection and supervision of the rights of persons with disabilities. In this context, the terms should be understood in the following sense: 1. Promotion means raising awareness about the social model of disability, scrutinizing legislative developments, and providing technical advice to authorities regarding CRPD application (de Beco & Hoefmans, 2013; European Union Agency for Fundamental Rights (FRA), 2016; MDAC, 2011; OHCHR, 2009; OHCHR – Europe Regional Office, 2014).

238  Research handbook on disability policy 2. Protection means investigating complaints regarding human rights violations, and sometimes even means that National Human Rights Institutions (NHRIs) will exercise quasi-jurisdictional functions (FRA, 2016; Manca, 2017; MDAC, 2011; OHCHR, 2009; OHCHR – Europe Regional Office, 2014). 3. Supervision means that the monitoring framework shall be in charge of evaluating national disability policy, legislation and practice in light of the social model and CRPD (Manca, 2017; MDAC, 2011; OHCHR, 2009). In its ‘Guidelines on independent monitoring frameworks and their participation in the work of the Committee on the Rights of Persons with Disabilities’, the CRPD Committee sets out what Hoefmans (2020) has identified as core principles and essential tasks to be carried out by monitoring mechanisms. The principal tasks include harmonizing national legislation with the CRPD standard, raising awareness about the social model, and investigating potential human rights violations (CRPD Committee, 2016, Annex). In terms of principles, States are required to consider ‘the principles relating to the status and functioning of national institutions for protection and promotion of human rights’. This phrase has been understood by scholars (Aichele, 2018; de Beco & Hoefmans, 2013), human rights bodies (OHCHR, 2009), and the CRPD Committee in its Rules of Procedure (2016, Annex, para. 3) as a reference to the Paris Principles.4 The Paris Principles set out some characteristics that should be fulfilled, in general, by Human Rights Institutions. Of these characteristics, three are particularly relevant for the independence of monitoring mechanisms in the CRPD context. NHRIs should be (i) created via law, so that their mandate is safeguarded from political interference (Principle A.2; Aichele, 2018; FRA, 2016; OHCHR – Europe Regional Office, 2014); (ii) intended to be independent mechanisms, for which they require sufficient funding and autonomy (Principles B.2 and B.3; Manca, 2017; OHCHR, 2009; OHCHR – Europe Regional Office, 2014); and (iii) intended to be plural, to be duly representative of society and, in this case, of persons with disabilities (Principle B.1). States may opt to designate an existing NHRI that is compliant with the Paris Principles as a monitoring mechanism (CRPD Committee, 2016, Annex), or encourage a newly formed monitoring mechanism. In either case, the designated mechanism (ad hoc or an NHRI) should adhere to the Paris Principles and the tasks outlined, ensuring that the CRPD is applied at the national level (CRPD Committee, 2016, Annex). In that sense, discussion has been raised with regards to whether just one institution within the monitoring framework should fulfil the Paris Principles, or every single institution in the mechanism should do so. Some argue that to truly have an independent monitoring system, every institution within the system must also be independent (de Beco & Hoefmans, 2013; FRA, 2016; MDAC, 2011). Others argue that it appears that it would be sufficient for one institution to be fully independent, and for others to be independent in their CRPD monitoring activities (Aichele, 2018). However, this last model raises the question of whether the lack of independence of one actor would compromise the independence of the entire system (de Beco & Hoefmans, 2013).

From international standard to national practice  239 2.3

‘Nothing About Us Without Us’ – a Brief Mention of the Role of Civil Society in Implementation and Monitoring

Article 33 also demands the inclusion of persons with disabilities and DPOs in the monitoring process. It can be read as supplementary to Article 4.3, which establishes the right of persons with disabilities to actively participate in decision-making processes concerning issues relating to persons with disabilities through their organizations. As such, the CRPD Committee states that DPOs should be ‘involved and participate fully in the monitoring process’ (2016, Annex para. 3). In order to fulfil this obligation, we consider that Article 33.3 implies that the monitoring mechanism should: (i) include the DPO’s representative in its composition; and (ii) operate under a consultation process scheme. This means that the mechanism should consider the opinion of the DPO’s representative, following the guarantees of a consultation process. Thus, the process should be conducted in good faith, be accessible and include reasonable adjustments when needed (CRPD Committee, 2018; de Beco & Hoefmans, 2013; MDAC, 2011; OHCHR – Europe Regional Office, 2014). States need to work so that organizations of persons with disabilities show up to these spaces with the ability to be heard and negotiate. This requires investing in capacity building, resource availability, and strengthening DPOs as leading institutions (CRPD Committee, 2018). In doing so, special attention should be placed towards structural discrimination that can be replicated within DPOs. Often, the voices of women, children, youth, ethnic minorities, and persons with cognitive and psychosocial disabilities will not be adequately represented by mainstream DPOs (CRPD Committee, 2018). As a result, the CRPD Committee has recommended, in its country observations, that States make special efforts to engage these groups in participation spaces. Given the notion of meaningful participation in every step of the political cycle, we argue that this participation should extend not only to the monitoring mechanism, but also to the implementation mechanism. We acknowledge that this is not explicitly stated in the text of the Convention or in the Concluding Observations of the Committee. However, since Article 4.3, State parties must allow for full and meaningful participation of persons with disabilities in all aspects of the political cycle (Manca, 2017; MDAC, 2011; OHCHR, 2009), avoiding purely formal consultations (CRPD Committee, 2018). We argue that this must necessarily extend to the implementation of the CRPD as one of the crucial stages of the political cycle when seen from the point of view of persons with disabilities.

3.

THE FRAGMENTED REALITY OF IMPLEMENTATION AND MONITORING MECHANISMS IN LATIN SOUTH AND CENTRAL AMERICA

The CRPD’s legal framework makes it clear that making Article 33 a reality is a complex issue, both in terms of legal design and practical implementation. In a context like LSCA, where inequality, poverty and disability are highly connected (Pinilla-Roncancio, 2015), changes in policy are urgent. This is where a construct like the one described in the previous section should, in theory, be especially useful as a means to ensure effective enjoyment of rights. However, as shown below, this has not proven to be the case. To evaluate existing implementation and monitoring mechanisms, and ensure consistency in the information analysed across countries, we limited our sources to a literary review of three sets of information: national legislation and policies, CRPD Committee Observations and Country

240  Research handbook on disability policy Table 19.2

Implementation mechanisms in LSCA countries

State party

Implementation mechanism

Argentinaa

Agencia Nacional de la Discapacidad (ANDIS)

Bolivia

Consejo Nacional de Personas con Discapacidad (CONALPEDIS)

Brazilc

Conselho Nacional dos Direitos da Pessoa com Deficiência (CONADE)

Chiled

Servicio Nacional de la Discapacidad (SENADIS)

b

Consejo Nacional de la Discapacidad (CND)

Colombiae

Consejo Nacional de Personas con Discapacidad (CONAPDIS) Consejo Nacional de Igualdad de Discapacidades (CONADIS)

Placement within State structure Decentralized organ within State Secretariat Ministry of Justice Ministry of Women, Family and Human Rights Ministry of Family and Social Development Ministry of Health and Social Protection

Participation of DPOs Advisory Board made up of DPOs and NGOs. Executive Board made up of nine representatives or persons with disabilities chosen by a national confederation. Blended composition, with an equal number of government and civil society representatives. Advisory Board made up of five DPO representatives. Blended composition, with six representatives of DPOs.

Ministry of Work and Social Security

Four of its 11 members are DPOs representatives.

Autonomous

Half of the Council members must be civil society representatives.

El Salvador

Consejo Nacional para la Inclusión de las Personas con Discapacidad (CONAIPD)

Autonomous

Guatemalai

Consejo Nacional para la Atención de Personas con Discapacidad (CONADI)

Half of the Council members must be civil society representatives. Allows for the participation of parents’ or relatives’ organizations.

Autonomous

Half of the Council members must be civil society representatives.

Costa Ricaf Ecuadorg

h

Hondurasj

Mexico

k

Nicaragual

Panamam

Dirección General para el Autonomous Desarrollo de las Personas con organ within State Discapacidad (DIGEDEPDI) Secretariat

Advisory Council of 13 persons with three representatives from DPOs, two from organizations that work on disability issues and two from parents and relatives’ organizations.

Consejo Nacional para el Advisory Assembly with Desarrollo y la Inclusión de Autonomous representation of DPOs and NGOs las Personas con Discapacidad chosen by state agents. (CONADIS) Consejo Nacional de Council has participation of DPO Promoción y Aplicación de Ministry of Health and a representative from parents los Derechos de las Personas and relatives’ organizations. con Discapacidad Executive Board has participation of two representatives of DPO, two representatives of parents and Secretaría Nacional de Autonomous relatives’ organizations and one Discapacidad (SENADIS) representative from organizations that work for disability issues.

From international standard to national practice  241 State party Paraguayn Peru

Uruguay

Venezuela

Implementation mechanism

Placement within State structure

Participation of DPOs

Secretaría Nacional por los Advisory Board of 17 members. Derechos de las Personas con Cabinet office Seven of them must come from Discapacidad (SENADIS) DPOs. Consejo Nacional para la Ministry of Women Advisory Board of representatives Integración de la Persona con and Vulnerable of civil society organizations. Discapacidad (CONADIS)o Populations No specific participation mechanisms. Aside from PRONADIS, there is a ‘Comisión Nacional Honoraria de la Discapacidad’, that advises Programa Nacional de government on disability. Its Ministry of Social Discapacidad (PRONADIS)p Executive Board has participation Development of every confederation of DPOs and allows for the participation of organizations of relatives and guardians of persons with disabilities. Vice-Ministry Consejo Nacional para las of the Supreme No information available. Personas con Discapacidadq Happiness for the People

Notes: a Decree 698/2017, 2017; b Law 223, 2012; c Decree 10.177, 2019; d Law 20.422, 2010; e Law 1145, 2007; f Law 9303, 2015; g Disabilities Act, 2012; h Decree 672, Inclusion of Persons with Disabilities, 2020; i Rules to Decree 135-96; j Decree No. 160-2005, 2005; k General Law of Persons with Disabilities, 2011; l Law 763, 2011; m Law 23, 2007; n Decree 10514, 2013; o Law 29973, 2012; p Law 18172, 2007; q Official Gazette No. 38.598, year unspecified.

Reports. Analysis was carried out through a series of matrices that allowed for the verification of each element of monitoring and implementation obligations in existing national legislations. For communication purposes, these matrices have been condensed into Tables 19.2 and 19.3. However, to ensure rigour in the analysis, the original matrices included a wider set of data points.5 Matrices included repeating questions reviewed by several people to ensure consistency in the data. Additionally, results were validated with experts from different countries, including Argentina, Chile, Colombia, Costa Rica, Ecuador, El Salvador and Guatemala. Our results show that with regards to implementation mechanisms, LSCA States have usually relied on Disability Councils as a means to fulfil the obligation set out in Article 33.1 CRPD. At the monitoring level, the regional picture shows a much more fragmented landscape, with States adopting ad hoc institutions to fulfil the monitoring and participation obligations set out in Articles 33.2 and 33.3 CRPD. 3.1

The Implementation Mechanism

Our analysis shows that, as of 2021, all States in LSCA have designated implementation mechanisms, as per Article 33.1 CRPD. Though named differently, these mechanisms fall under the broad category of Disability Councils. The individual names will vary between ‘Council’, ‘Secretariat’ or ‘Agency’, with a common abbreviation being ‘CONADIS’ (a shorthand for National Council on Disability in Spanish). These CONADIS have been adopted as the focal point for implementation in 16 countries in LSCA, except for Honduras, which has designated

242  Research handbook on disability policy Table 19.3

Monitoring mechanism in LSCA countries

State party

Implementation mechanism

Argentinaa

Boliviab

Placement within State structure Observatorio Nacional Agencia de la Discapacidad Nacional de la Discapacidad (ANDIS) *Implementation mechanism Ombudsman (NHRI) Independent

Participation of DPOs

CRPD Committee response

No provisions.

Rejected because of the lack of independence.h

No provisions.

Accepted by the Committee.i We dispute this because of the lack of DPO participation. Rejected because of the lack of independence.j

Conselho Nacional Ministry Blended dos Direitos da Pessoa of Women, composition. com Deficiência Family and (CONADE) Human Rights Chile Not designated Procuraduría de Colombiad Autonomous DPOs are part of the Derechos Humanos mechanism. Ombudsman Comptroller General of the Republic DPOs Costa Ricae Consejo Nacional Ministry Four of its 11 de Personas con of Work members are DPOs Discapacidad and Social representatitves. (CONAPDIS) Security Ecuador Not designated El Salvadorf Procuraduría para Prosecutor’s DPOs are part of the la Defensa de los Office mechanism, as they Derechos join the Procuraduria at the Permanent Forum for Persons with Disabilities. Guatemalag Comisión Presidencial Presidency No provision. Coordinadora de la Política del Ejecutiva en Materia de Derechos Humanos (COPREDEH) Uruguay Comisión Nacional Ministry DPOs have Honoraria de la of Social representation Discapacidad Development within the CNDH as (CNDH) designated members. Brazilc

Rejected because the Health, Social Security and Disability Ombudsman are part of the mechanism, reinforcing the medical model of disability.k No Concluding Observations yet.

Rejected because of the lack of independence, resources and mechanisms for the involvement of DPOs.l Rejected without an explicit reason.m

Rejected as it also operates as the implementation mechanism. The State provision is unclear on this end.

Notes: a Decree 806/2011, 2011, article 3; b Law 870, 2016; State party’s response to the CRPD Committee’s List of Issues, 2016, para. 102; c Decree 7256, 2010; State party report to the CRPD Committee, 2014, para. 260; d Law 1618, 2013, article 68; State party report to the CRPD Committee, 2015, para. 261; e Law 9303, 2015; f State party report to the CRPD Committee, 2011, para. 272; g State party report to the CRPD Committee 2015, para. 253; h CRPD Committee. Concluding Observations. Argentina. 19 October 2012, para. 51; i CRPD Committee. Concluding Observations. Bolivia. 4 November 2016, para. 73; j CRPD Committee. Concluding Observations. Brazil. 29 September 2015, paras 58, 59; k CRPD Committee. Concluding Observations. Colombia. 30 September 2016, para. 72; l CRPD Committee. Concluding Observations. El Salvador. 8 October 2013, para. 62; m CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, paras 76–77.

From international standard to national practice  243 a sector of its Human Rights Secretariat. Some of these organs were created before CRPD. However, the structure and functions of these are not different from those that were created after the CRPD ratification. All of them often fulfil roles such as enacting programs to ensure people with disabilities have access to their rights,6 organize access to social benefits,7 push for State compliance with international human rights standards8 and work on inclusion policies.9 CONADIS are also tasked with representing the State parties at the Committee for the Elimination of all Forms of Discrimination against Persons with Disabilities of the Organization of American States. This is the monitoring organ of the Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities, which all LSCA countries have also ratified. In Table 19.2, we have identified the placement of implementation mechanisms in each country, and the legal provision for participations of DPOs in them based on legislation and State party reports. As can be seen, these mechanisms share some features, but diverge on multiple others, especially with regards to their legal status. Are Disability Councils CRPD compliant? The answer remains unclear. On the one hand, human rights bodies and scholars have identified certain common characteristics that implementation mechanisms should have, as outlined in section 2.1. Out of these, all 17 Disability Councils are single government entities (OHCHR, 2009, para. 24). State parties’ reports and national legislation are unclear with regards to the level of direction that Disability Councils have over policy. Despite recommendations leaning towards appointing an actor as a leader in terms of CRPD implementation, the information currently available does not make it clear whether that role falls upon Disability Councils. While recommendations argue that implementation mechanisms should be placed in most departments and all levels of the state apparatus, or at high levels of government to acquire political capital and agenda setting capacity (de Beco, 2011; de Beco & Hoefmans, 2013; OHCHR, 2009), this does not necessarily seem to hold true in LSCA. Of the 17 mechanisms reviewed, eight are autonomous mechanisms, of which three are placed at high levels of government. In Argentina and Honduras, the implementation mechanisms are part of the State Secretariat systems. In Paraguay, SENADIS is part of the Cabinet office, and has been accepted as a valid implementation mechanism by the CRPD Committee. However, autonomy has not necessarily translated into an ability to influence policy, meaningful participation, or access to resources. In countries with autonomous Disability Councils, the CRPD Committee has reported that these have insufficient funding and underqualified personnel and lack influence.10 More broadly, in six LSCA States, implementation mechanisms can be found within social affairs ministries (i.e. Ministry of Women, Ministry of Social Development) or Ministries of Justice or Human Rights, and in four States they can be found within welfare ministries (Health, Labour or Social Security). The latter may be a sign of the prevalence of the medical model in the implementation of disability policy, and the view of persons with disabilities as subjects requiring benefits. It may also reflect the continuation of a historic perception of persons with disabilities as persons reliant on charity (Amponsah-Bediako, 2013; Goodley, 2016). Further, it is interesting to note that the CRPD Committee has provided little guidance on whether Disability Councils are CRPD compliant or not. On the one hand, in its ‘Guidelines on independent monitoring frameworks and their participation in the work of the Committee on the Rights of Persons with Disabilities’, the Committee has referenced Disability Councils as ‘advisory bodies’ that can be involved in implementation processes (2016, Annex). On the other hand, the Committee has rarely provided observations or recommendations to State parties when they have reported implementation mechanisms. Most often, the Committee’s Concluding Observations make no mention of the State’s designated implementation mechanism.11 Of the

244  Research handbook on disability policy 17 LSCA reports analysed, the Committee only expressly commented on three implementation mechanisms: those of El Salvador, Paraguay and Guatemala. Thus, in 2013, the CRPD Committee rejected El Salvador’s implementation mechanism (CONAIPD12) without further explanation (para. 67). Recently, El Salvador has adopted a new law on disability, Act 672 of 2020, which introduces some changes in its organic regulations, like the participation of civil society in the Council. This new structure has yet to be reviewed by the CRPD, so it is unclear whether it will be held to be CRPD compliant. In 2013, Paraguay’s SENADIS13 was accepted as an implementation mechanism, in coordination with the National Commission on the Rights of Persons with Disabilities.14 This is the only Disability Council explicitly accepted by the Committee from the countries covered by this paper. In the case of Guatemala, the CRPD Committee acknowledged the role of CONADI15 as an implementation mechanism and focal point but urged Guatemala to strengthen its resources and funding.16 DPOs and NGOs legally have a role in all Disability Councils under study. As mentioned before, the participation of DPOs is fundamental for an inclusive, comprehensive design of public policies with a disability approach that is compliant to CRPD standards. However, even though the CRPD Committee seems to allude to the importance of participation in Disability Councils in General Comment 7 (2018, para. 31, 94), it does not provide insight on the role that participation should play on this obligation of Article 33. One area where the CRPD Committee and national legislation could both be clearer on is how participation comes to life. Some issues to be considered could be internal elections within the mechanism, how decisions on budget allocation should be made and how internal policies should be framed. As can be noted from the prior paragraphs, the CRPD Committee has been vague on the expected requirements of an implementation mechanism. States have created these Councils as a space for cooperation with civil society. However, it is not clear which government institutions should be included in these councils. A study of Concluding Observations emitted to LSCA State parties does not provide clear insight on how mechanisms should work, and what characteristics they should have. Further, as we will demonstrate in the following section, the Committee’s Observations have not helped State parties to distinguish between implementation and monitoring mechanisms, as they tend to refer to issues and recommendations regarding both within the same paragraph. 3.2

The Monitoring Mechanism

As we have stated, the CRPD Committee guidelines regarding the implementation mechanism are notably deficient. The scenario, however, does not improve when we consider the monitoring mechanism. The analysis regarding lack of clarity goes beyond LSCA’s CONADIS, which in fact, are not competent in monitoring matters. Nevertheless, if we look at global numbers, we find that the Committee has only acknowledged monitoring mechanisms from 31 States.17 Of those countries, 13 designated an existing NHRI, 11 designated a mechanism formed by multiple institutions and seven designated committees dedicated to working on disability issues or observatories, or some combination of the aforementioned. This, of course, gives no clear indicator of the type of structure that is expected from a State party. More so, when the Committee has acknowledged a monitoring mechanism, it has recommended that the State party increase its independence18 and funding,19 clarify its functions20 and align its institutions with the Paris Principles21 to comply with Article 33 CRPD. Aside

From international standard to national practice  245 from these recommendations, a CRPD-compliant mechanism would have to allow for the participation of DPOs, in order to fulfil the obligation, set forth in Article 33.3, regarding political participation. In the LSCA context, it is hard to think of a system of multiple fully independent institutions that involves DPOs. As we see in Table 19.3, in most of these countries, monitoring functions have been assigned to programs within Ministries. In a few cases, Ombudsman institutions have been designated as monitoring mechanisms but, due to their institutional nature, these do not allow for DPO participation. Table 19.3 summarizes the monitoring mechanisms designated in the countries under study, as well as their placement within the State structure and the provision for the participation of DPOs. As shown above, of the 17 countries under review, only Bolivia has a monitoring mechanism that has been accepted by the CRPD Committee.22 The mechanism is comprised only of the National Ombudsman. We will dispute this claim with regards to the lack of participation of DPOs in the upcoming paragraphs. Three countries (Chile, Ecuador and Venezuela) have not designated monitoring mechanisms, while four countries (Costa Rica, Mexico, Nicaragua and Peru) have designated mechanisms that are yet to be reviewed by the CRPD Committee. In the remaining nine countries (Argentina, Brazil, Colombia, El Salvador, Guatemala, Honduras, Panama, Paraguay and Uruguay), the CRPD Committee has rejected the mechanism, citing lack of independence and resources (Argentina, Brazil, El Salvador, Honduras, Paraguay, Uruguay) or doing so without express cause (Guatemala, Panama). Interestingly, in the case of Colombia, the monitoring mechanism was considered non-compliant because, by being ascribed to the Ministry of Health, it contributes to the medicalization of disabilities.23 When citing lack of independence, the CRPD Committee has referenced the proximity of the monitoring and implementation mechanisms, and the dependence of monitoring systems on government processes and funding.24 From our review, it appears that despite there not being specific monitoring structures expected of State parties, the Committee leans towards validating the designation of NHRIs or mixed mechanisms that include an NHRI. This may be because NHRIs already tend to satisfy the Paris Principles, especially in the LSCA region, so using these as a monitoring recourse is a more efficient way to ensure the monitoring entity is independent. In fact, it is important to note that in the region, Argentina, Colombia, Chile, El Salvador, Guatemala, Panama, Peru and Uruguay have NHRIs ranked with an ‘A’ by the Global Alliance of National Human Rights Institutions. However, this raises the following question: Would designating NHRIs be compatible with the participation of DPOs? Traditionally, NHRIs have not been built to consider the meaningful participation of DPOs. Because of this, unlike Disability Councils, they do not have spaces like advisory boards and consultation structures that DPOs can be involved in. In this sense, it is important to question what the extent of the obligation set out in Article 33.3 is. As we have mentioned, a monitoring mechanism is a human rights novelty. However, unclear and difficult guidelines may make it difficult for States to comply with the obligation of Article 33.2. The participation principle seems hard to grasp at this level. The activities that would require participation and the way this must be done require further guidance.

246  Research handbook on disability policy

4. CONCLUSIONS Article 33 creates innovative obligations in human rights law. Since implementation and monitoring go beyond the usual obligation of respect and redress, States need to create, adapt and change public policies in different ways. This requires a public policy approach that is uncommon in human rights law. The analysis in LSCA countries allows us to derive some key findings, policy implications and recommendations for further research. One key finding is that the CRPD Committee has not provided clear guidance on what is expected of State parties in order to comply with the obligations derived from Article 33. Some general guidelines, in terms of the hierarchy of the implementation mechanism and independence of the monitoring mechanism, have been clearly stated, but no concrete obligations have been detailed. This makes compliance complex. However, that difficulty has not stopped LSCA countries from trying to formulate their own approach to adopting the Article 33 mechanism. With regards to implementation, State parties in the region have opted to adopt or adapt Disability Councils. These organs have become an important factor in the creation of disability-related public policies because they congregate both State actors and civil society organizations. Nevertheless, their possibility to impact policy decisions usually falls short because of a lack of resources and ability to influence policy actively. Participation is, interestingly, better institutionalized than it is in monitoring mechanisms, because of the structured, institutional nature of the councils. In terms of monitoring, there is no clarity in the process. Putting the system in place appears to have been a fragmented process, with blurred demands and steps. State parties seem to confuse the nature of the mechanism, and the relationship between the monitoring and implementation functions. Similarly, this has led State parties to create institutions, foregoing the possibility of designating existing, successful NHRIs like Ombudsman offices. Moving forward, a fundamental step towards making Article 33 a reality is for international organizations – especially the CRPD Committee – to provide concrete implementation guidelines that are culturally sensitive. Academia and the CRPD Committee need to embrace existing institutions in Global South countries and provide the required guidance to ensure their proper functioning within the CRPD framework. For LSCA State parties, it would be advisable to strengthen Disability Councils, as they are (and should be) the proper spaces for the implementation of the treaty and the participation of DPOs. In terms of monitoring, it would be advisable for State parties in the region to utilize existing NHRIs, which already comply with the Paris Principles. If this option were to be taken, this would require State parties to designate an additional space as part of the monitoring mechanism to allow for the participation of persons with disabilities. As a closing note, it is important to state that the findings presented here are merely literary. Further research would certainly benefit from contrasting the legal design of implementation and monitoring mechanisms with the reality of their work on the ground.

NOTES 1. 2.

Start of endnote. This includes all countries in South and Central America, except Belize, Guyana and Suriname. It does not include the Caribbean. End of endnote. End of endnote. Start of endnote. It should be noted that the authors are not unanimous on their understanding of how the CRPD relates to the understanding of disability. While the idea that the CRPD is built on

From international standard to national practice  247

3. 4. 5. 6.

7. 8. 9.

10. 11.

12. 13. 14. 15. 16. 17.

the theoretical premises of the social model of disability is widely accepted, some argue that the CRPD goes beyond the social model into what has been called the human rights model of disability (Degener, 2017). End of endnote. Start of endnote. Brazil is a dualist State. However, because of the method of approval, the CRPD does have supra-constitutional value in domestic law. End of endnote. Start of endnote. Principles relating to the Status of National Institutions. United Nations General Assembly Resolution 48/134. 20 December 1993. End of endnote. Start of endnote. For a more detailed analysis, see: Bregaglio (2021). End of endnote. Start of endnote. Argentina: Decree 698/2017, article 1; Bolivia: Law 223, 2012, article 45; Brazil: Decree 7256, 2010; Chile: Law 20.422, 2010, articles 61, 62; Colombia: Law 1145, 2007, articles 9, 12; Guatemala: Rules to Decree 135-96, article 9; Mexico: General Law of Persons with Disabilities, 2011, article 39; Panama: SENADIS Strategic Plan; Peru: Law 29973, 2012, article 20; Uruguay: Law 18172, 2007; Venezuela: Official Gazette No. 38.598, year unspecified. End of endnote. Start of endnote. Argentina: Decree 698/2017, article 1; Chile: Law 20.422, 2010, articles 61, 62; Peru: Law 29973, 2012, article 20. End of endnote. Start of endnote. Bolivia: Law 223, 2012, article 45; Brazil: Decree 7256, 2010; Guatemala: Rules to Decree 135-96, article 9. End of endnote. Start of endnote. Brazil: Decree 7256, 2010; Chile: Law 20.422, 2010, articles 61, 62; Colombia: Law 1145, 2007, articles 9, 12; Ecuador: Disabilities Act, 2012, article 89; Guatemala: Rules to Decree 135-96, article 9; Honduras: Decree No. 160-2005, 2005; Mexico: General Law of Persons with Disabilities, 2011, article 39, Panama: SENADIS Strategic Plan; Peru: Law 29973, 2012, article 20; Uruguay: Law 18172, 2007; Venezuela: Official Gazette No. 38.598, year unspecified. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, para. 76. End of endnote. Start of endnote. A note must be made here in the cases of Mexico and Nicaragua, States that are yet to undergo review by the Committee. A note must also be made with regards to the cases of Argentina, Costa Rica and El Salvador, all of which have designated new mechanisms yet to be reviewed by the CRPD Committee. End of endnote. Start of endnote. Consejo Nacional para la Inclusión de las Personas con Discapacidad. End of endnote. Start of endnote. Secretaría Nacional de Discapacidad. End of endnote. Start of endnote. Concluding Observations. Paraguay. 15 May 2013, para. 75. End of endnote. Start of endnote. Consejo Nacional para la Atención de la Persona con Discapacidad. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Guatemala. 30 September 2016, para. 76. End of endnote. Start of endnote. Concluding Observations. Austria. 30 September 2013, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. Armenia. 8 May 2017, para. 58; Concluding Observations. Bolivia. 4 November 2016, para. 74; Concluding Observations. Cyprus. 8 May 2017, para. 66; Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. Macedonia. 29 October 2018, para. 58; Concluding Observations. Sudan. 10 April 2018, para. 68; Concluding Observations. Latvia. 10 October 2017, para. 55; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Uganda. 12 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Korea. 29 October 2014, para. 62; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Germany. 13 May 2015, para. 62; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. Ethiopia. 4 November 2016, para. 70; Concluding Observations. Belgium. 28 October 2014, para. 49; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Tunisia. 13 May 2011, para. 42;

248  Research handbook on disability policy

18.

19.

20. 21.

22. 23. 24.

Concluding Observations. Croatia. 15 May 2015, para. 53; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Malta. 17 October 2018, para. 50; Concluding Observations. Lithuania. 11 May 2016, para. 68; Concluding Observations. Kenya. 30 September 2015, para. 60; Concluding Observations. Mexico. 27 October 2014, para. 62; Concluding Observations. Paraguay. 15 May 2013, para. 76; Concluding Observations. Hungary. 22 October 2012; Concluding Observations. Spain. 19 October 2011, para. 6; Concluding Observations. Germany. 17 April 2015, para. 62. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Austria. 30 September 2013, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Poland. 21 September 2018, para. 56; Concluding Observations. Macedonia. 29 October 2018, para. 58; Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Sudan. 10 April 2018, para. 68; Concluding Observations. Latvia. 10 October 2017, para. 55; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. United Kingdom of Great Britain and Northern Ireland. 3 October 2017, para. 71; Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Armenia. 8 May 2017, para. 58; Concluding Observations. Cyprus. 8 May 2017, para. 66; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Uganda. 12 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Korea. 29 October 2014, para. 62; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. European Union. 2 October 2015, para. 77; Concluding Observations. Germany. 13 May 2015, para. 62; Concluding Observations. Bolivia. 4 November 2016, para. 74. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Morocco. 25 September 2017, para. 63; Concluding Observations. Mexico. 27 October 2014, para. 62. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Oman. 17 April 2018, para. 60; Concluding Observations. Luxembourg. 10 October 2017, para. 59; Concluding Observations. Honduras. 4 May 2017, para. 70; Concluding Observations. Ethiopia. 4 November 2016, para. 70; Concluding Observations. Portugal. 20 May 2016, para. 65; Concluding Observations. Qatar. 2 October 2015; para. 60; Concluding Observations. Belgium. 28 October 2014, para. 49; Concluding Observations. Ecuador. 27 October 2014, para. 55; Concluding Observations. Tunisia. 13 May 2011, para. 42; Concluding Observations. Croatia. 15 May 2015, para. 53; Concluding Observations. Algeria. 21 September 2018, para. 57; Concluding Observations. European Union. 2 October 2015, para. 77. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Bolivia. 4 November 2016, para. 73. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Colombia. 30 September 2016, para. 72. End of endnote. Start of endnote. CRPD Committee. Concluding Observations. Argentina. 19 October 2012, para. 51; CRPD Committee. Concluding Observations. Honduras. 4 May 2017, paras 67, 68; CRPD Committee. Concluding Observations. Paraguay. 8 October 2013, p. 7. End of endnote.

REFERENCES Aichele, V. (2018). Art. 33: National implementation and monitoring. In I. Bantekas, M. Ashley Stein, & D. Anastasiou (Eds.), The UN Convention on the Rights of Persons with Disabilities. A commentary (pp. 978–1011). Oxford University Press. Amponsah-Bediako, K. (2013). Relevance of disability models from the perspective of a developing country: An analysis. Developing Country Studies, 3(11), 121–133. https://core.ac.uk/download/pdf/ ​ ​ ​ ​ ​ ​ 234681343.pdf ​

From international standard to national practice  249 Bregaglio, R. (2021). Marco Legal de los Derechos de las Personas con Discapacidad: América Latina y El Caribe. Inter-American Development Bank. https://publications.iadb.org/publications/ ​ ​ ​ ​ ​ spanish/document/Marco-legal-de-los-derechos-de-las-personas-con-discapacidad-America-Latina-y ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -el-Caribe.pdf ​ ​ Committee on the Rights of Persons with Disabilities. (2013, October 8). Concluding Observations on the initial report of El Salvador. CRPD/C/SLV/CO/1. United Nations. https://docstore.ohchr.org/ ​ ​ ​ ​ SelfServices/FilesHandler.ashx?enc=6QkG1d%2fPPRiCAqhKb7yhstksiS6LWF8TU4o56WJXMhK ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ cwRp7hBWgrY38CDaU0Xb%2bUphmF3HheW5A0FlNbO3gvWh2XuL4XameBMIb4TcxPJOw ​ ​ ​ ​ ​ ​ ​ h14jxaJxLaL2HwrThEIj Committee on the Rights of Persons with Disabilities. (2016, October 10). Rules of procedure. Annex. CRPD/C/1Rev.1. United Nations. https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/ ​ ​ ​ ​ ​ ​ ​ TBSearch.aspx?Lang=en&TreatyID=4&DocTypeID=65 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Committee on the Rights of Persons with Disabilities. (2018, November 9). General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention. Advance Unedited Version. CRPD/C/GC/7. United Nations. https://digitallibrary.un.org/record/3899396?ln= ​ ​ ​ ​ ​ ​ ​ ​ en de Beco, G. (2011). Article 33(2) of the UN Convention on the Rights of Persons with Disabilities: Another role for national human rights institutions? Netherlands Quarterly of Human Rights, 29(1), 84–106. https://www.corteidh.or.cr/tablas/r25910.pdf ​ ​ ​ ​ ​ ​ ​ de Beco, G., & Hoefmans, A. (2013). National structures for the implementation and monitoring of the UN Convention on the Rights of Persons with Disabilities. In G. de Beco (Ed.), Article 33 of the UN Convention on the Rights of Persons with Disabilities: National structures for the implementation and monitoring of the Convention (pp. 9–66). Martinus Nijhoff Publisher. https://doi.org/10.1163/ 9789004220829_003 ​ de Beco, G., & Murray, R. (2014). A commentary on the Paris Principles on National Human Rights Institutions. Cambridge University Press. https://doi.org/10.1017/CBO9781139565325 ​ ​ ​ ​ ​ Degener, T. (2017). A human rights model of disability. In P. D. Blanck & E. Flynn (Eds.), Routledge handbook of disability law and human rights (pp. 31–49). Routledge. European Union Agency for Fundamental Rights (FRA). (2016, May 13). Opinion of the European Union Agency for Fundamental Rights concerning requirements under Article 33(2) of the UN Convention on the Rights of Persons with Disabilities within the EU context. FRA Opinion – 3/2016 – CRPD. FRA. https://fra.europa.eu/sites/default/files/fra_uploads/fra-opinion-03-2016-crpd.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Goodley, D. (2016). Disability studies: An interdisciplinary introduction (2nd edn). Sage. Hoefmans, A. (2020). The EU framework for monitoring the CRPD. In D. Ferri & A. Broderick (Eds.), Research handbook on EU disability law (pp. 71–88). Edward Elgar Publishing. Manca, L. (2017). Article 33. National implementation and monitoring. In V. Della Fina, R. Cera, & G. Palmisano (Eds.), The United Nations Convention on the Rights of Persons with Disabilities: A commentary (pp. 591–606). Springer. Mental Disability Advocacy Center (MDAC). (2011). Building the architecture for change: Guidelines on Article 33 of the UN Convention on the Rights of Persons with Disabilities. https://www.mdac.org/ ​ ​ ​ ​ en/building_the_architecture_for_change_guidelines_on_article_33_of_the_un_convention_on_the ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _rights_of_people_with_disabilities ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 68/2018. Promovente: Comisión Estatal de Derechos Humanos de San Luis de Potosí (Pleno August 27, 2019). https://sidof .segob.gob.mx/notas/docFuente/5584384 ​ ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 101/2016. Promovente: Comisión Nacional de los Derechos Humanos (Pleno August 27, 2019). https://www.cndh.org.mx/ sites/default/files/resolucion/2019-10/Acc_Inc_2016_101_Demanda.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Mexico Suprema Corte de Justicia de la Nación. Acción de inconstitucionalidad 1/2017. Promovente: Comisión Nacional de los Derechos Humanos (Pleno October 1, 2019). https://www.dof.gob.mx/nota _detalle.php?codigo=5586715&fecha=18/02/2020 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Office of the High Commissioner for Human Rights. (2009, December 22). Thematic study by the Office of the United Nations High Commissioner for Human Rights on the structure and role of national

250  Research handbook on disability policy mechanisms for the implementation and monitoring of the Convention on the Rights of Persons with Disabilities. A/HRC/13/29. Human Rights Council. United Nations. https://undocs.org/A/HRC/13/29 Office of the High Commissioner for Human Rights – Europe Regional Office. (2014). Study on the implementation of Article 33 of the UN Convention on the Rights of Persons with Disabilities in Europe. United Nations. Oliver, M., & Barnes, C. (2012). The new politics of disablement. Palgrave Macmillan. Palacios, A. (2008). El modelo social de discapacidad: Orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Cinca. Pinilla-Roncancio, M. (2015). Disability and poverty: Two related conditions. A review of the literature. Journal of the Faculty of Medicine (Revista de La Facultad de Medicina), 63(3Sup), 113–123. https:// doi.org/10.15446/revfacmed.v63n3sup.50132 ​ ​ ​ ​ ​ ​ Sabatello, M., & Schulze, M. (Eds.). (2013). Human rights and disability advocacy. University of Pennsylvania Press. Shelton, D. L. (2011). International law and domestic legal systems: Incorporation, transformation, and persuasion (introduction). Oxford University Press. https://scholarship.law.gwu.edu/cgi/viewcontent ​ ​ ​ ​ ​ ​ ​ .cgi?article=1389&context=faculty_publications ​ ​ ​ ​ ​ ​ ​ ​

20. Narrative 6: Affection and emancipation: the friendship of four disabled women1 Karla Garcia Luiz, Laureane Marília de Lima Costa, Mariana Lúcia Agnese Costa e Rosa and Thaís Becker Henriques Silveira

Once upon a time there was a city without holes.2 (Alice Rosa Bacelar)

We, Karla, Laureane, Mariana and Thais, four women with disabilities, are writing this letter. We are from different regions of Brazil and our meeting took place virtually, from the time we militated together in the Helen Keller Feminist Collective of Women with Disabilities (CFHK), except for Karla and Thais, who live in the same state and had already known each other from the academic context. Before reporting on how this meeting enhances the transformation of the descriptive experience of disability into a political experience, as Mia Mingus3 teaches us, we would like to share a little of the history of each one of us, understanding the places from which we started to build this relationship and the path we followed together. I, Karla, was born with a physical disability due to Congenital Multiple Arthrogryposis. I am a 38-year-old heterosexual cisgender woman with white skin, and grew up in a small town on the southern coast of Brazil. I have a complex dependency and I need care for my activities of daily living. I am a psychologist and a federal civil servant in a secondary, technical and higher education institution (IFSC). I am currently doing my PhD at the Federal University of Santa Catarina. My studies and professional performance are aligned with the perspective of Feminist Disability Studies and Disability Justice. More recently, I became the mother of little Helena and I have been living experiences from my place as a mother with a disability. As for me, Laureane, I was born with a physical disability due to the genetic disease Spinal Muscular Atrophy, being the only person with disability in my family. I am a psychologist and have worked mainly training professionals in Health and Education for anti-ableist action. Recently, I defended my Master’s in Education at the Federal University of Jataí, researching the dialogue between the fields of Emancipatory Sexual Education and Feminist Disability Studies. I am a cisgender, heterosexual, white-skinned, feminist, working-class woman. I have a high level of physical impairment and the maintenance of both my active professional and my academic life, as well as my survival, depends on my family’s caring relationships. Some people consider such care relationships a “proof of unconditional love”, and others consider it a “painful sacrifice”, but I consider it a demonstration of the absence of the State, which does not prioritize the establishment of a public policy of care. In this meeting of the four friends, I have learned that disability can be not only tolerated, but also loved. I, Mariana, am a 44-year-old woman, white-skinned, cisgender, and was born and have been living in Belo Horizonte (MG). I am a journalist by graduation – I currently work as a Communication professional in a technology company – but I am a popular educator. In this field, I work as a trainer of professionals in the field of Education and as a mobilizer for families of people with disabilities, in order to guarantee access to Education, as a fundamental 251

252  Research handbook on disability policy right, for all children and young people with disabilities. The interest in this work came with the birth of my daughter Alice, now 8 years old. Alice has neuromotor dysfunction (known as cerebral palsy) and epilepsy, and has a high level of dependence on mediation and care. The title of mother also brought compulsory militancy, so that both my daughter and I have assured rights and decent living conditions. More recently, I have also become a visually impaired woman. My residual vision allows me to carry out activities with relative autonomy, with the support of assistive technologies, which makes me passable, that is, I suffer less prejudice and restriction of rights than my daughter and my friends with whom I write here. Therefore, my affirmation as a woman with disability is, above all, political, and marks the place from which and alongside who I move – as a woman with disability and as the main caregiver of a child with disability. It is, above all, with Karla, Laureane and Thais that I have been learning to do this with responsibility and affection. Finally, me, Thais, a 28-year-old white middle-class cisgender woman. I have a degree in Law from the Federal University of Santa Catarina and a Master’s Degree in Human Rights from the University of São Paulo. At the age of 20, I became a woman with disability. I use a wheelchair and I remember hearing for a long time from some “professionals” that I was in the process of denying my disability, for not being sad (or “grieving”) when I started to experience it. I know, however, that this “becoming” had as reference colleagues with disabilities who, throughout my educational process, from basic education to graduation, enabled me to understand disability from the social model – even if, at the time, without naming it. I also depend on the care of others – especially my mother – to carry out my activities of daily living. Today, I live, work and study about disability, especially its intersection with gender, based on Feminist Disability Studies. I love reading, listening to music and I believe in affection as a revolutionary and emancipatory act – what I learned from Karla, Laureane and Mariana. As we mentioned before, we militated together in CFHK for a while and, after most of us left this organized space, the four of us stayed in a WhatsApp group as a way to maintain the bond of friendship. At that time, we did not imagine that the group would become a space not only for sharing personal experiences, but also for strengthening our daily coping strategies against ableism. We feel that the group has always been a very welcoming space for listening, not only with regard to friendship in sharing everyday situations – such as, for example, when we exchange everyday experiences, if the week is quiet or with more demands for study/work, or in family experiences, if someone became ill or has already recovered – but also in sharing a suffering produced by different oppressive situations – such as, when we report ableist expressions that cross the academic, professional and care contexts, impolite comments of health professionals and invasive attitudes of strangers that do not usually happen to people without disabilities – on issues involving the fact that we are women with disabilities and how much this relationship politicizes disability, as it mobilizes and engages us in the political and collective struggle. We recognize that, in addition to the descriptive experience of disability, our intersectional feminist awareness drives us to the construction of the political experience of incorporating the identity of disability in order to face the tactics of dispersion and emulation of the policy of ableism, pointed out by Campbell.4 Our meeting made us embody one of the “key ideas” of the feminist movement: the personal is political. Here we learn that affection can be political, as we call for contextual changes that will be beneficial to those we love – Karla, Laureane, Mariana, Thais, Alice and Helena – and to those we don’t know – millions of girls and women with disabilities, their daughters and caregivers of people with disabilities. We have also learnt that political struggle can be loving,

Narrative 6: Affection and emancipation  253 as we welcome our pain collectively – sometimes saddening us together, sometimes angering us together, waiting for the necessary time for our recovery and then rejoicing together for what we can do to intervene in reality – rather than charging for immediate coping action at any cost. Even without intending to turn our friendship into a political space, we realize that the intersection of gender and disability politicizes it. Sometimes, we were told that we should not be close to other people with disabilities, after all, that way we would be “drawing attention to the disability”, highlighting it, putting it in evidence, which, in a compulsory able-bodied society like ours, should be avoided to the greatest extent possible. We realize, however, that this is a strategy to keep us apart from each other. A strategy that finds foundation in the recognition of the revolutionary potential that our meeting has. Which knows that the love shared between us strengthens us and teaches us that our body is power and our union, impulse. We often share situations that make us feel lonely, exhausted, insecure, questioning ourselves, such as whether or not we are exaggerating when we react to ableist speech and actions, or whether we would be less activistic because we suffer for them. When we share, we realize that these feelings are collective and, even without pretence, naming them we managed, each one in its own time, to re-signify them and, thus, we strengthened ourselves for political action. In our experience together, we have learnt to name what violence is with the same intensity with which we have learnt to recognize the security of affection and that is why we have started, together, to imagine and create a city without holes – here understood as inequalities – as Alice invited us to while learning to write.

Figure 20.1

Karla Garcia Luiz and Helena Garcia

254  Research handbook on disability policy

Figure 20.2

Thais Becker Henriques Silveira

Figure 20.3

Mariana Lúcia Agnese Costa e Rosa and Alice Rosa

Narrative 6: Affection and emancipation  255

Figure 20.4

Laureane Marília de Lima Costa

NOTES 1. 2.

3. 4.

Start of endnote. This text was originally written in Portuguese and later submitted for translation into English by Alana Lazaretti Solvalagem. End of endnote. Start of endnote. This was the first sentence in a book written by Alice Rosa Bacelar, during a school activity. Alice was taught to be literate by her mother, Mariana, during the pandemic, at home, and uses alternative communication resources to communicate and write. During the year 2021, she wanted to write a book about her imagination and, from the start, shared the desire for an accessible city based on the social model of disability. End of endnote. Start of endnote. Mingus, Mia. Moving Toward the Ugly: A Policy Beyond Desirability. 2011. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Available at: https://leavingevidence.wordpress.com/2011/08/22/moving-toward-the-ugly-a-politic -beyond-desirability/ . Accessed: 25 October 2021. End of endnote ​ Start of endnote. Campbell, Fiona Kumari. Exploring Internalized Ableism Using Critical Race Theory. Disability & Society, 23(2), 151–162, 2008. Available at: https:// www .tandfonline .com/ doi/ abs/ 10 .1080/ 09687590701841190. Accessed: 20 October 2021. Campbell, Fiona Kumari. Contours of Ableism: The Production of Disability and Abledness. Palgrave Macmillan, 2009. End of endnote.

21. Decolonizing disability rights policies through indigenous theorization: the case of Zimbabwe Martin Musengi

INTRODUCTION Throughout the world, the status of one’s ‘full membership’ in society is relevant to disability because of the realities ranging from economic exclusion to the questioning of the humanity of people with disabilities. In the global South, people with disabilities struggle to access education, employment, health, recreational and other services. In southern Africa in particular, access to rights are hard-fought through advocacy by disabled people’s organizations (DPOs) and individuals with disabilities. The DPOs seek to overthrow paternalism and the systemic injustices of neo-liberalism brought about by globalization. It is in this context that this chapter explores the inclusiveness of disability rights in Zimbabwe, a country where colonialism introduced much of the global North thinking currently associated with disability rights. In the country’s climate of uncertainty characterized by austerity, hyperinflation, illegal economic sanctions and a global pandemic, valuable indigenous moral knowledge related to disability ought to be recognized anew. This is because many local stakeholders realize the tensions and limitations of operationalizing Northern-grounded disability rights in this climate. In this context, the chapter critically analyzes how the CRPD-linked national disability policy (NDP) offers insights based on indigenous theorization, particularly theorization on conceptions of personhood. To this end, the chapter examines how the NDP recognizes that multiple identity markers intersect with disability to frame the life worlds of persons with disabilities.

CONCEPTUAL FRAMEWORK: INDIGENOUS THEORIZATION OF DISABILITY RIGHTS WITHIN THE CRPD Human rights are at once a utopian ideal and a realistic practice for implementing that ideal. In effect, rights advocate treating a person like a human being in order to get a human being. Rights also indicate how to treat someone as a human being. Human rights thus can be seen as a self-fulfilling moral prophecy advocating the treatment of people like human beings, according to an enumerated list, in order to get truly human beings (Donnelly, 2013). This forward-looking moral vision of human nature provides the basis for the social changes implicit in claims of human rights. If the underlying vision of human nature is within the limits of ‘natural’ possibility, and if the derivation of the list of rights is sound, then implementing those rights will make real that previously ideal nature (Donnelly, 2013). The human rights model underlying disability rights argues that human dignity is the anchor norm of human rights so that each individual is deemed to be of inestimable, inherent value and nobody is insignificant regardless of economic or other usefulness (Quinn & Degener, 2002). Degener (2016) explains that human rights are unconditional and so do not require the 256

Decolonizing disability rights policies through indigenous theorization  257 absence of impairment. The foregoing is consistent with Donnelly’s (2013) position that the very humanity of people should guarantee their membership in society since human rights are literally the rights that one has simply because one is a human being, thereby implying the equality, inalienability and universality of rights. Since one cannot stop being human, one either is or is not a human being, and therefore has the same human rights as everyone else or none at all. On the basis of this understanding of rights, the UN Convention on the Rights of People with Disabilities (United Nations, 2006) appears to argue the indivisibility of civil, political, economic and social rights as human rights. An undue categorization of rights results in the extremist position of rights absolutism versus cultural relativity which unnecessarily magnifies the conflict between the universalism of rights and cultural sensitivity. The indivisibility of human rights trumps the universalist versus cultural sensitivity question. The argument is that human rights are probably the most significant political force shaping the life experience of people with disability (Perlin, 2013) and therefore should not be unduly categorized. The political implications of indivisible human rights being equal, inalienable and universal help to progressively realize rights for people with disabilities, based on cultural sensitivity on what is human nature. In Africa, the underlying vision of human nature is captured in The Africa We Want: Agenda 2063 (African Union (AU), 2015) and the African Charter on the Rights of Persons with Disabilities (AU, 2018). One of the key aspirations of Agenda 2063 (AU, 2015) is shared prosperity and well-being, unity and integration, a continent of free citizens and expanded horizons, where the full potential of women and youth, boys and girls is realized, and with freedom from fear, disease and want. This vision is borne on the back of exemplary successes in the fight against slavery, colonialism and apartheid (AU, 2015). According to AU (2015), by 2063 African countries will be amongst the best performers in global quality of life measures. This will be attained through strategies of inclusive growth, job creation, increasing agricultural production; investments in science, technology, research and innovation; gender equality, youth empowerment and the provision of basic services including health, nutrition, education, shelter, water and sanitation. All kinds of oppression including gender, racial and other forms of discrimination will be addressed (AU, 2015). To this end, Africa shall promote human and moral values based on inclusion and the rejection of all forms of terrorism, religious extremism and other forms of intolerance, irrespective of their motivations. Africa shall be an inclusive continent where no child, woman or man will be left behind or excluded, and all citizens will be actively involved in decision-making in all aspects irrespective of any demographic factor. The AU plan is an endogenous plan for transformation, that is, one that purposefully harnesses the continent’s comparative advantages such as its natural resources, its people, history and cultural values (AU, 2015; Munthali, Nantchouang, Diawara, Chikozho & Nhemachena, 2017). Endogenous transformation implies indigenous African cultural values as epitomized in Ubuntu. Ubuntu is the African philosophy of life and personhood that denies that persons can be defined by focusing on this or that particular physical or psychological characteristic of the lone individual (Menkiti, 2007). As Mbiti (1969) notes, the Ubuntu view of ‘person’ can be summed up in the dictum: ‘I am because we are, and since we are, therefore I am’ (p. 14). On the basis of this Ubuntu dictum, Menkiti (2007) draws the conclusion that, as far as Africans are concerned, the shared experience of the communal world takes precedence over the experience of individual life histories. In Africa, therefore, it is in rootedness in an ongoing human community that the individual comes to see himself as a person, and it is by

258  Research handbook on disability policy first knowing this community as a stubborn enduring fact of the psychophysical world that the individual also comes to know himself as a durable, more or less permanent, fact of this world (Menkiti, 2007). He argues that in the African dictum ‘I am because we are’, the ‘we’ referred to here is not an additive ‘we’ but a thoroughly fused collective ‘we’. It is a collectivity in the truest sense in which there is assumed to be an organic dimension to the relationship between the component individuals. Teffo (1994) explains that this African conception of ‘person’ does not negate individuality, as it just discourages the view that the individual takes precedence over the community. Ndaba (1994) and Shutte (1993) add that such a conception also preserves the ‘other’ in their ‘otherness’ as unique, without letting them slip into the distance. An Ubuntu-based understanding of personhood eschews focusing on impairment or functioning in a person. This is because in Ubuntu a person is defined by reference to the environing community rather than any particular feature of the individual. Therefore, the environing community is an organic collectivity reflective of individuals. According to Menkiti (2007), this contrasts with the global North understanding of community, where there is a non-organic bringing together of atomic individuals into a unit more akin to an association than a community. In the latter understanding of community, individual capacity is given prominence in ways that may influence whether and how an individual is accorded human rights. It can therefore be argued that an Ubuntu-based organic conception of community in which individuals are fused equals is more likely to result in all being seen as deserving of human rights and receiving equitable treatment. In support, Mugumbate (2020) has argued that the solidarity associated with Ubuntu ‘enriches’ the helper just as much as the one who is assisted. Similarly, Peta (2022) points out that the NDP calls for the strengthening of training for Village Health Workers on disability issues because they are part of the local community. This is congruent with Donnelly’s (2013) conception of human rights as a self-fulfilling moral prophecy advocating the treatment of all people like human beings. Although compassion, warmth, understanding, caring, sharing and humanness are underscored by most major Eurasian world-views, Ubuntu serves as a distinctly African rationale for these ways of relating to others (Louw, 1995) and may therefore provide pointers on understanding human rights in contexts where community is considered as primary. The primacy of community in Africa is consistent with the international disability protocol that links disability with development, the CRPD (United Nations, 2006). The CRPD appears to be having a significant influence on Africa, as is evident in the African Charter on the Rights of Persons with Disabilities (AU, 2018), which is also consistent with most of the disability-specific legislation in the southern African region. The Charter declares that state parties have the obligation to take appropriate and effective measures to ensure, respect, promote, protect and fulfill the rights and dignity of persons with disabilities without discrimination on the basis of disability. According to the African Charter, this obligation is to be met through, among other things, mainstreaming disability into legislation, policies, development plans, programs and activities in all spheres of life. These African ideas on disability rights were for a very long time sidelined in policy-making as global North thinking associated with disability sidelined valuable indigenous moral knowledge on disability. This sidelining is contrary to Devlieger’s (1998) observation that global North bio-medical definitions of impairment are not universal and Stone (2001) who said that perceptions of the body and mind vary across cultures and also change over time. In the global North, the individualistic medical approach to disability is rooted in the work of sociologist Talcott Parsons and his discussion of sickness and sickness-related behavior (Barnes, 1998;

Decolonizing disability rights policies through indigenous theorization  259 Barnes & Mercer, 2005). Parsons is reported to have argued that the ‘normal’ state of being in Northern society is good health, and therefore sickness and by implication any impairments are deviations from ‘normality’. Foucault said that medicine dictates what constitutes normal, thereby identifying a whole class of deviant individuals. This institutionalization of the norm, which Foucault called normalization, indicates the pervasive standards that structure and define social meaning (Feder, 2013), in which medical model definitions are contrary to Ubuntu conceptions. The medical model embodies what Parsons called the ‘sick role’ which is a view of clients as patients exempt from normal social roles, as they are not responsible for their condition. In this view people with disabilities are defined as pathological and in need of cure. The International Classification of Disease ICD-10-CM (WHO, 2014) and the Diagnostic and Statistical Manual (APA, 2013) provide a common terminology for medicine and psychiatry respectively, and so a comparable taxonomy of disability was deemed necessary to systematize documentation. The International Classification of Functioning (ICF, 2001) is a document published to accompany the ICD to document the consequences of disease and injury. Central to the ICF classification is the understanding that impairment denotes any loss or abnormality of psychological, physiological or anatomical structure or function while disability is any restriction or lack (resulting from impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. In this thinking, handicap is a disadvantage for any person resulting from impairment or disability that limits or prevents the fulfillment of a role that is normal for that person depending on age, sex, and social and cultural factors. This means that disease can lead to impairment which can lead to disability which in turn can lead to handicap. As the functioning and disability of an individual occurs in a context, the ICF also includes a list of environmental factors. This list may be viewed as partially addressing the Ubuntu focus on environing community. Colonialism introduced much global North thinking associated with disability so that policy-making for disability rights in many former colonies remains neo-colonial and aligned to global North ideas to the extent that the focus is on individual deficits. The primacy of community in Africa and its rootedness in an ongoing human community are usually sidelined in policy-making as well as DPO programming. Policies rooted in an ongoing human community would enable the individual with a disability to first know and belong to this community while learning to know himself/herself as a durable, more or less permanent fact of that community. Pre-colonial, indigenous frames of reference are grounded on valuable indigenous moral knowledge related to disability. Now masked by colonialism, they are recognizable in the primacy accorded to community as is evident in contemporary socio-cultural models of disability. Socio-cultural models are based on the idea that disability is not a result of impairment but a direct consequence of society’s failure to take into account the differing needs of people with disabilities and remove barriers they encounter (Oliver, 2009). Disability is therefore something imposed on people’s impairments through stereotyping, prejudice, discrimination and lack of access. Mugumbate (2020) cites the Zimbabwean Jairos Jiri Association as a rare example of a disability organization founded on strong Ubuntu ethics grounded in pre-colonial, indigenous frames of reference. According to Mugumbate (2020), the work of the association with people with disabilities has been based on an indigenous, ‘to parent’ model as illustrated in Table 21.1. The model in Table 21.1 emphasizes the inclusion of family and local community in the rehabilitation of people with disabilities and is therefore fit for purpose in a multicultural

260  Research handbook on disability policy Table 21.1 T O

Jairos Jiri ‘to parent’ model Take people you want to help as your friends or family (ukama) Only use existing resources and facilities like friends, hospitals and homes (ujamaa)

 

P A R E N T

Provide resources like transport to facilities as some people may not be able to go on their own Adequate care, education and support. Provide practical ideas on how rehabilitation could be done Reduce stigma and cost of care by providing housing in institutions where necessary Enterprises (ushavi) for livelihoods Need for supporting carers like spouse, relatives and friends Training opportunities for self-reliance

Source: Mugumbate (2020).

society where inclusivity is paramount. It is also consistent with Zimbabwe’s current development mantra ‘Nyika inovakwa nevene’ (A nation is built using indigenous resources). The NDP appears to take this on board by calling for persons with disabilities themselves to become resources trained to become habilitation and rehabilitation professionals as well as actively participate in the manufacture and supply of assistive devices. Zimbabwe’s national Constitution (2013) and the CRPD (United Nations, 2006) facilitate this focus which is captured in the NDP (2021). This facilitation by the legal and policy framework is discussed in the following section in order to give proper context to the discussion of the NDP’s specific provisions.

LEGAL CONTEXT OF ZIMBABWE’S NATIONAL DISABILITY POLICY Zimbabwe enacted its first ever NDP in 2021. The NDP is grounded on the supreme law of the land, the Constitution of Zimbabwe (2013). Article 56.3 of the Constitution reads: Every person has the right not to be treated in an unfairly discriminatory manner on such grounds as their nationality, race, colour, tribe, place of birth, ethnic or social origin, language, class, religious belief, political affiliation, opinion, custom, culture, sex, gender, marital status, age, pregnancy, disability, or economic or social status, or whether they were born in or out of wedlock.

In section 22, the Constitution enunciates disability issues as a national objective. The Constitution’s Declaration of Rights in section 83 bestows on people with disabilities ‘justiciable’ rights thereby empowering them to seek redress when their rights are violated as stipulated in section 85 of the Constitution. Recognition in the National Constitution probably gave impetus to the ratification of the CRPD in September 2013. The National Constitution is therefore in tandem with the CRPD’s article 4(a) which directs the adoption of appropriate legislative measures for the implementation of the rights recognized in the international protocol. The CRPD gives expression to how poverty and development are linked to disability, which can however be addressed by changing attitudes, removing barriers and assuring the protection of rights in every aspect of life (Berghs, Chataika, Dube & El-Lahib, 2020). The international protocol states:

Decolonizing disability rights policies through indigenous theorization  261 Disability results 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. (United Nations, 2006)

The CRPD goes further than merely re-stating rights as it has a transformative vision (Lord & Stein, 2008). It creates a new rights discourse, empowers civil society and renders human rights more obtainable for persons with disabilities. The CRPD is the first binding international treaty to specifically protect the rights of the world’s population of people with disabilities (Kanter, 2007). The CRPD calls on participating governments to change their country’s laws as necessary to comply with the terms of the Convention in order to protect the rights of their citizens with disabilities. The scope and coverage of the Convention is unprecedented as it recognizes unequivocally the right of people with disabilities to dignity, to live in the community, to exercise their legal capacity, and to ensure their full and equal enjoyment of rights recognized in the Convention. Kayess and French (2008) laud the Convention as a great landmark in the struggle to reframe the needs and concerns of persons with disability in terms of human rights. They regard the CRPD as having finally empowered the world’s largest minority to claim their rights and to participate in international and national affairs on an equal basis with others who have achieved specific treaty recognition and protection. In its adoption of a social and human rights approach rather than a medical approach, the CRPD is congruent with global South ideas. However, as Meekosha and Soldatic (2011) convincingly argue, the CRPD may have Northern conceptions that are limiting and discordant with Southern conceptions. For example, Ubuntu’s organic rather than the Northern non-organic, additive conceptions of community may be a case in point. In Northern non-organic conceptions of community, individual abilities or lack of such abilities are given prominence in ways that may be viewed as patronizing the individual so that they are treated as less than human beings. An Ubuntu-based organic conception of community in which individuals are fused equals is more likely to result in equal treatment as truly human beings that are in solidarity. This Ubuntu conception is consistent with Donnelly’s (2013) explanation that the idea of human rights implies that the very humanity of people guarantees their membership in society. Donnelly (2013) argues that these are rights that one has simply because one is a human being thereby implying the equality, inalienability and universality of rights. Ubuntu’s organic conception of community resonates with the view of everyone as a human being, with the same human rights as everyone else regardless of capacity. Such a position facilitates Donnelly’s (2013) self-fulfilling moral prophecy advocating the treatment of people like human beings, according to an enumerated list, in order to get truly human beings. The self-fulfillment of this moral prophecy mainstreams rights for all people and also mainstreams disability. Mainstreaming disability is important because people with disabilities constitute about 15 percent of the world’s population which makes them the world’s largest minority group (WHO & World Bank, 2011) and arguably therefore a paramount issue in international development (Chataika, 2019). This is evidenced by their being mentioned under four of the United Nations’ 17 Sustainable Development Goals (SDGs). They are mentioned under SDG 4 on education, SDG 8 on growth and employment, SDG 10 on inequality and SDG 11 on accessibility of human settlements. This focus is not accidental as people with disability have the potential to contribute significantly to human prosperity. Not surprisingly, therefore, according to Berghs et al. (2020), the CRPD gives expression to how poverty and development are linked to disability, which can be addressed by changing attitudes, removing barriers and strengthening

262  Research handbook on disability policy assurances of protection of rights in every aspect of life. Furthermore, De Beco (2019) touts the CRPD as a foundational disability protocol that has blurred the distinction between civil and political rights, on the one hand, and economic and social rights, on the other. Blending rights in this organic way is important but needs to be complemented by recognizing the organic nature of community as in the case of Ubuntu-based communities. This thinking supports Mladenov’s (2013) argument that the community interpreting and giving meaning to the CRPD ought to recognize, and admit as important stakeholders, disabled people’s collectives in order for the Convention to be effective. Such a community-focused understanding of disability is in line with the human rights model which is foundational to the disability rights movement and is ably captured in the Constitution of Zimbabwe (2013). Befittingly, therefore, the Zimbabwean Constitution and the CRPD are key frameworks informing the NDP and undergirding its main principles and specific provisions.

SPECIFIC PROVISIONS OF THE NDP The NDP is organized into five main sections being an introduction, conceptual framework, key standards, implementation framework as well as monitoring and evaluation. In the situation analysis section of the introduction the NDP bemoans the lack of current and reliable data on disability in Zimbabwe. It points out, however, that plans are underway to undertake a national disability survey. The NDP does observe that the fear of stigmatization results in restrictions in the interaction between children with disabilities and the outside world. At this point, it appears to miss the opportunity to analyze any positive norms, values and beliefs from indigenous cultures that could be brought to bear in disability interventions. Indigenous understandings of disability that could have been used to inform the policy are also missing from section 1.3 ‘the meaning of disability’, section 1.8 ‘frameworks that informed the policy’ as well as section 2 ‘the conceptual framework’. This is despite acknowledging in the conclusion of the conceptual framework section that disability is part of social, economic, cultural and historical settings. The purpose of the NDP, as stated in section 1.4, is to guide the State and all institutions and agencies of government, development partners and all sectors at every level in formulating and supporting the implementation of laws, policies and intervention strategies that lead to fulfilling, promoting, protecting and respecting the rights of persons with disabilities in Zimbabwe. The NDP seeks to address the oppression, marginalization and discrimination that is experienced by persons with disabilities because of the intersection of disability and various identity markers that frame their life worlds. Although specific reference is made to the intersection of disability and older persons (section 3.11), children with disabilities and children of parents with disabilities (section 3.16) and women with disabilities (section 3.17), the NDP avoids privileging any identity marker. It appears to do this in line with Ndaba’s (1994) and Shutte’s (1993) observation of Ubuntu’s inherent preservation of the ‘other’ in their ‘otherness’ as unique, without letting them slip into the distance. Therefore, even though the NDP generally recognizes that multiple identity markers intersect with disability to frame the life worlds of persons with disabilities, it appears to specify intersections with gender and age only in order to ensure that they do not fall through the cracks rather than to privilege them. Similarly it specifies veterans of the 1970s liberation struggle with disabilities apparently for

Decolonizing disability rights policies through indigenous theorization  263 the same reason as well as to raise the status of disability by associating it with these venerated members of society. Specifically, the objectives of the NDP are to: ● Mainstream disability in all laws, policies, guidelines, programs and interventions (designed or adapted) to ensure that they are inclusive of and accessible to persons with disabilities. ● Attain laws, policies, programs and interventions (designed or adapted) that directly address the disability-related needs and concerns of persons with disabilities. ● Review all existing and all new sectorial legislation and policies, programs, budgets and reporting systems to align with international treaties and constitutional obligations on disability. ● Outline the role of key existing and proposed actors in relation to the implementation of the policy. ● Raise awareness and facilitate transformation within the State and all institutions and agencies of government, all sectors at every level, and society regarding disability issues. ● Guide the self-representation of persons with disabilities, including that of children with disabilities. ● Ensure that all planning, designing, budgeting, implementing, monitoring and evaluation of policies, programs, guidelines and interventions, across all sectors are inclusive of and accessible to persons with disabilities. The objectives of the NDP are undergirded by several principles, all of which are related to the Constitution of Zimbabwe and the CRPD and some of which may be related to indigenous understandings; for example, respect for inherent dignity and individual autonomy, and full and effective participation in society. These principles in detail are as follows: ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●

Respect of inherent dignity and individual autonomy and independence Respect for freedom to make one’s own choices Non-discrimination Full and effective participation and inclusion in society Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity Equality of opportunity Accessibility Gender equality Respect for the evolving capacities of children with disabilities Respect for the right of children with disabilities to preserve their identity Respect for older persons Respect for diverse cultural and religious values Collaboration between persons with disabilities and non-disabled persons Mainstreaming disability across all sectors Formulating disability-targeted interventions that aim to directly address the needs and concerns of persons with disabilities Respect for veterans (of the liberation struggle) with disabilities.

The objectives and principles of the NDP are grounded on 26 standards. In the following sections, some of these critical standards are discussed in light of the NDP’s set objectives and

264  Research handbook on disability policy principles in the general context of human and disability rights as well as the implementation, monitoring and evaluation framework specific to this policy. The discussion is also informed by the findings of the UN Flagship Report on Disability (2019), which represents the first United Nations system-wide effort to examine disability and the SDGs of the 2030 Agenda for Sustainable Development at a global level. Therefore, the discussion leans particularly heavily on the extent to which the UN SDGs are realizable on the basis of implementing the NDP. Economic Empowerment and Self-reliance A key NDP standard that will be dwelt on here is ‘to ensure that persons with disabilities are economically empowered and self-reliant’. This standard intends to empower persons with disabilities and their families so that they use various resources including local resources to effectively and efficiently uplift their own standard of living. The idea is that persons with disabilities, and their families, can make a positive contribution in the mainstream national development agenda. The unity between persons with disabilities and their families is extended to ensure the building of alliances between them and other non-disabled persons, so that they work together to improve standards of living. This standard resonates with the main principle of Ubuntu relating to rootedness in an ongoing human community in order for individuals to see themselves as ‘persons’. There is a deliberate focus on the creation of opportunities for self-employment, entrepreneurship, and the development of co-operatives and acquisition of funding by persons with disabilities as well as the mainstreaming of disability in micro-finance facilities and services, thereby encouraging persons with disabilities and their families to engage in various investment programs. Generally, persons with disabilities should not be discriminated against on the basis of disability in all matters concerning all forms of employment, including recruitment, hiring and employment, retention, career advancement and safety and health conditions. Employers are to ensure that persons with disabilities have access to job opportunities across all sectors – a minimum of 15 percent of the workforce of every organization including the public and private sectors should comprise persons with disabilities. Nevertheless, persons with disabilities should be employed on the basis of skills, merits, qualifications, knowledge and abilities, and not just on the basis of disability. The intention is to ensure that reasonable accommodation is provided to persons with disabilities and that they are not viewed as charity cases. This standard is particularly important in light of the UN Flagship Report on Disability (2019) finding that persons with disabilities are more likely to live in poverty than persons without disabilities due to barriers in society such as discrimination, limited access to education and employment and lack of inclusion in livelihood and other social programs. Zimbabwean data on income poverty disaggregated by disability remains scarce, but Mitra and Yap (2021) provide important insights. They report telling statistics showing that, compared to persons without functional difficulties, persons with a high level of functional difficulty were 21 percentage points more likely to have less than primary school education as their highest level of schooling, and that they also have a lower share of the population in employment (Mitra & Yap, 2021). Similarly, Mitra and Yap (2021) report that people with disabilities have significantly lower rates of access to safely managed drinking water, sanitation, electricity and asset ownership. Available international data confirm that the proportion of persons with disabilities living under the national or international poverty line is higher than, and in some countries double, that of persons without disabilities. Regarding food security, in developed

Decolonizing disability rights policies through indigenous theorization  265 countries, available data shows that the average percentage of persons with disabilities who are unable to afford a meal with protein every second day is almost double that of persons without disabilities. More women with disabilities than men with disabilities are in such a situation, and the gender gap between women and men in terms of access to meals with protein is wider among persons with disabilities. In developing countries, data shows that persons with disabilities and their households are more likely to not always have food to eat than persons without disabilities and their households. The NDP standard to ensure that persons with disabilities are economically empowered and self-reliant is therefore critical for empowering persons with disabilities and their families so that they use various resources including local resources to effectively and efficiently uplift their own standard of living. This is in line with one of the key aspirations of the African Union (AU, 2015) relating to shared prosperity and well-being, unity and integration so that by 2063 African countries will be amongst the best performers in global quality of life measures. The NDP aligns very well with this continental aspiration of inclusive growth, job creation, increasing agricultural production and investments in science, technology, research and innovation, among others. Social protection programs for persons with disabilities can be vital in facilitating an escape from poverty. However, more focused financial inclusion can help persons with disabilities out of poverty by accessing financial services such as banks. The NDP could have done more to tackle restrictions in terms of the lack of physical and virtual accessibility to these services. The policy could also set standards for the inclusion and empowerment of persons with disabilities so that their standard of living contributes to Zimbabwe’s National Development Strategy 1 (NDS 1, 2020). Failing to tie the NDP to a mainstream economic policy such as the NDS 1 and subsequent development strategies leaves it open to interpretation from an individual deficit, charity perspective which is the antithesis of Ubuntu. The core problem of putting the values of the NDP into practice stems largely from the relative invisibility of people with disabilities in the past and that, at least to some extent, they may still tend to be viewed as objects rather than subjects in their own right. This means that the legal protections normally associated with the rule of law were either not applied or were severely curtailed. In ensuring their effective enjoyment of the right to life, the NDP needs to clearly perceive them as subjects rather than objects by giving them access to the full benefits of basic freedoms that most people take for granted and clearly pointing to the significance of their contributions to mainstream economic activities. The NDP acknowledgement in its preface that persons with disabilities represent one of the most marginalized minority groups whose concerns are often swept under the carpet decries this. However, the denial of disabled persons’ role in development requires a stronger response than that. One possibly stronger response would be to ground the NDP on explicitly home-grown disability theorizing, for instance, indigenous models inspired by southern African theory and ethics, such as an Ubuntu model of disability (Chataika, Berghs, Mateta & Shava, 2015). The ‘Jairos Jiri “To Parent” model’ (Mugumbate, 2020) is an example of an Ubuntu-informed standard which highlights ushavi (enterprises) so that disabled people can contribute to mainstream economic activities in the thrust towards achieving an empowered and prosperous upper-middle-income economy by 2030. Two other standards in the NDP are key as they relate to living conditions as well as exploitation, violence and abuse. The two standards are clear that both within and outside homes, persons with disabilities must be protected from all forms of abuse and therefore restrictions to their participation. These standards are critical because according to the UN

266  Research handbook on disability policy (2019) report, despite progress made in recent years, persons with disabilities continue to face numerous barriers to their full inclusion and participation in the life of their communities. The UN report sheds light on the disproportionate levels of poverty among people with disabilities; their lack of access to education, health services and employment; and their underrepresentation in decision-making and political participation. Parnes, Cameron, Christie, Cockburn, Hashemi and Yoshida (2009) also found that this is particularly the case for women and girls with disabilities. However, the well-intentioned Zimbabwean NDP standards on living conditions and exploitation could be enhanced. Exhorting families not to conceal, neglect or segregate disabled family members is all very well but seems to fall short as it neither makes specific reference to nor relies on any indigenous principles which families would be familiar with. The NDP standards on living conditions and exploitation are a welcome development, but they could have gone further to embrace and revitalize positive indigenous understandings of equality for persons with disabilities on these issues. The further step of embracing indigenous disability theorizing may have an impact on neo-liberal encroachments onto disability rights as they explain and interpret the historical and contemporary situation of moral and legal entitlements of people with disabilities from a different paradigm – the locally grounded socio-cultural paradigm. Disability inclusion and its relationship with the historical development of disability advocacy in local communities are likely to provide unexpected answers to the situation of austerity and disability not just in Zimbabwe but anywhere in the world.

CONCLUSION Currently, the right to inclusive, mainstream and disability-specific services and amenities can still not be taken for granted in many countries in the global South. Possibly because of southern Africa’s fairly recent history of nationalist liberation struggles which fought to overthrow colonial, imperialist capitalism and replace it with social democracy, disability rights policy-making in these contexts is expected to seek to overthrow paternalism and the injustices of neo-liberalism brought about by globalization. Pre-colonial, indigenous frames of reference therefore appear to have greater potential for developing disability policies that are fit for purpose in a multicultural society. With these sentiments in mind, this chapter has examined Zimbabwe’s first ever disability policy which recognizes that multiple identity markers intersect with disability to frame the life worlds of persons with disabilities. The policy recognizes the intersection of disability with not only gender, age, culture, religion, sexuality, language and socio-economic class but also other social life attributes. Alignment of this well-intentioned disability policy with indigenous conceptions of disability, community, and other pieces of legislation and policy that may be grounded on divergent medical and charity discourses needs to be undertaken urgently. The chapter proposed a renaissance of disability rights policy-making espoused in indigenous philosophies such as Ubuntu. Embracing positive indigenous philosophies of disability and community has the potential to revitalize understandings that may be receding to the depths of the collective unconscious of local communities. It may even make a positive contribution for a global society that wants to strengthen community for the purposes of community-based development. It is critical to carry out further research to plumb the depths of indigenous theories such as Ubuntu to find out how they can contribute to global understandings of disability and disability rights.

Decolonizing disability rights policies through indigenous theorization  267

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PART II WELFARE Karen R. Fisher and Olivia Geehan

The second part of the Handbook is about welfare and disability policy. The chapters and narratives in this part reflect a broad approach to welfare. They explore the way the state is involved in the lives of people with disability in terms of promoting and protecting people’s rights. They discuss how people with disability interact with the state, focusing on the agency, voice, interdependence and social context of people with disability. The human rights framework of the book means that the chapters emphasize people’s entitlement to welfare and wellbeing. This meaning is applied to a wide interpretation of welfare to include rights to income, services, social and state infrastructure (housing, education and relationships). We open in a non-traditional fashion with a shape poem by Peter Raisbeck, ‘AS1428.1 2021 and all that jazz’. This style of poetry is meant to be read out loud. Peter calls it a disability version of the American poet Allen Ginsberg’s ‘Howl’, and the intensity of sudden enmeshment with disability policy and systems is captured with both wit and passion. The first set of chapters addresses questions about how human rights approaches are important to thinking about how welfare influences the ways that people with disability interact with the state. Maker’s lead chapter takes the example of Article 19 of the UNCRPD, which enshrines the human right to live independently and be included in the community, as fostering a policy shift from disempowering care to rights to support. The chapter highlights the historically fraught relationship between disability rights claims and ‘welfare’ policy. Maker argues that the UNCRPD lays the groundwork for challenging many of the shortcomings of traditional approaches via the formalization of rights in policies. In this context the next chapters explore people’s voice and agency, relational engagement with each other and with the state, interdependence within social contexts and with the state. Frawley and Mirfin-Veitch consider the impact of the state on the intimate, or personal, life. They examine the experiences of people with disabilities to conclude that narrative research about sexuality and relationships can empower communities and provide better access to sexuality rights. Cindy Liu’s narrative exposes the personal impact of ableism on the lives of disabled people, particularly women. Higgins et al. draw on the stories from refugee communities to stress the importance of narratives and involving people with disabilities in 269

270  Research handbook on disability policy policy processes. Accompanying this chapter is a narrative by Mahmoud Murad, in which he describes his cross-cultural advocacy work as a refugee and his aspirations as a man with disability. Zirnsak continues this theme, arguing that the storytelling process, often central to support service access, plays a vital role in both informing individual experience, and either strengthening or countering deficit-based tendencies of government processes. The next set of chapters have a more explicit focus on how the state positions people with disability in welfare policy, problematizing key aspects of welfare and the roles of the state in the lives and social relations of people with disability. Pettinicchio critiques how disability policy in the US has been implemented in ‘half-solutions’ derived from neo-liberal institutionalism, which exclude people with disabilities from more robust rights-based systems of protection. Benoot and Roose discuss the growing approaches to disability welfare that focus on personal budget programmes. They emphasize that such policies reflect humanist ideas of autonomy, equality and self-determination. They employ a critical view of this approach, balancing the importance of universal human rights with the practical outcomes of such appeals, and raising the need to consider conceptualizations of autonomy that involve reciprocity and interdependence. Voulgarides focuses on US education disability policy, arguing that courts and compliance procedures often default to symbolic gestures as compliance, when such programmes are not achieving equality in practice. A personal narrative by Alexander Elliott demonstrates the relational nature of change and the perspectives of a young man on what is required for change to be meaningful. The next set of chapters considers reforms to welfare that re-frame policy in terms of entitlement and interaction with human rights as a concept of agency, equality and equity within our society. They raise questions about how well welfare policies are transitioning towards a human rights approach in each context. Morris frames the welfare state as a mitigation force that can impact directly on access and outcomes. Morris argues that the positive potential of the welfare state to manage disaster risk can be strengthened where people with disabilities participate in decisions about these welfare mechanisms. Daniel-Mayes, Harpur and Stein discuss the slow response of universities to recognize the rights of people with intersectional experiences, in this case Indigenous students with disability. Their chapter emphasizes the responsibility of institutions in privileged positions to adjust policies and processes to accommodate intersectionality. Ayah Wehbe’s reflection on her experience of education as a Deaf woman both personalizes these concepts and illustrates the nuances in intersectional experiences. Emong and Zeyen continue with applying these concepts to discrimination in education. They examine why changes in disability policy in Uganda have seen greater equity in primary and secondary education but not in tertiary education, highlighting the discrepancy between policy and implementation. Still within policy reform, Partridge, Kanjilal and Arnull argue that the policy framing of welfare programmes for people with disabilities may be at odds with the expectations of majority and minority groups, which may be a barrier for these groups to seek support. They take a dual focus on class and minority cultural groups, and ask us to consider whether welfare approaches informed by a holistic model of wellbeing and by active participation of service users might bridge this barrier. The last chapter in this group by Jackson, Wilson and Marcello explores the application of a human rights lens to the creation of spaces accessible to people with disabilities. It speaks to the potential of transdisciplinary, human rights-informed interactive relationships and processes to create new ways of approaching accessible environments. Mac Zamani’s narrative about the draining expectations placed on people with disabilities and

Part II: Welfare  271 the marginalizing effects on identity bring a personal layer to this policy discussion, showing the very real impacts on young people’s lives. The next chapters analyse the policy and lived experience meanings of independence and individualization in the social context, demonstrating how the interpretation of rights varies by time, place and context. Chang and Chou adopt a post-colonial lens to analyse the assumptions and practical implications of the CRPD in the non-Western context of Taiwan, focusing upon housing policy for people with disabilities, as provided by state or community and influenced by community attitudes. Similarly, Tsaputra and Pollard reveal the impact of disability and inclusion, as they explore the Indonesian term difabel, which is used by activists to describe the active participation and contribution of people with disability in the mainstreaming of development approaches in welfare and disability policy. Valdebentio-Acosta, Hasbún-Mancilla and Acharan analyse housing policy in Chile, and demonstrate the failure of the state in providing equal access to housing as given in the CRPD, as a result of its history of subsidiarity. Peter and John analyse the interactions between disability and higher education to illustrate the transition of disability policies in response to human rights imperatives. These chapters reiterate the policy challenges of gaps between aspiration and implementation.

22. Narrative 7: Disabled Howl – AS1428.1 2021 and all that jazz Peter Raisbeck

Dr. Peter Raisbeck is Associate Professor of Architectural Practice at the Melbourne School of Design University of Melbourne. Since 2006 he has been at Melbourne University teaching Architectural Design and Practice, Design Activism and Contemporary Architectural Archives. He has published around 60 book chapters and journal and conference papers. His work and research outputs broadly span the architectural profession, its history, professional politics and future prospects. He has a particular interest in understanding the architectural profession’s present condition through its histories, theories and current dilemmas. In September 2018 he was diagnosed with Motor Neurone Disease. For some, this disease will eventually trap people inside of their own body. Taking away your ability to move, eat, breathe and speak, all while your cognitive function remains untouched. His book, Architecture as a System: Scavengers, Tribes, Warlords and Megafirms, published in 2019 is a major contribution to the understanding of the convergence between global finance architectural design and practice. His co-authored book with Dr. Christine Phillips, Robin Boyd: Late Works 1960–1971, was published in 2020. His book, Architects, Sustainability and the Climate Emergency: A Political Ecology, was published in 2022. In 2020 he undertook a number of online poetry writing workshops at the Victorian Writers Centre with the poet Andy Jackson. Peter Raisbeck’s poetry is inspired by CAConrad, Ariana Reines, August Kleinzahler, Paul Celan and Reiner Maria Rilke amongst others. He is currently working towards publishing a chapbook of his poetry.

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Narrative 7: Disabled Howl — AS1428.1 2021 and all that jazz  273  

Abled 2 Disabled: Step step go the systems, tick tick go the performance criteriaz, accessiblelised design stairs balustraded ballets for little stick people on the blue wheel chair toilet accessibility sign, rompy ramps slammed into zigguratted entry steps, crazy traffic light clicks, tactile dotted crossings, chequered metal plated lift platforms, sanitary chromed shower grabrails universalised design principles National Construction Code National Disability Insurance Scheme plan managed call back call centralization, portable ramps, Australian Standard Fourteen fucking Twenty Eight Point 1 Disabled Two Abled: Quicker if it was my body car smashed than each neurone string slow snapping one by one, my twenty-nine ninety-five buck pharmacy stick lifebouying me over each paved step and then thick and fast the NDIS support vehicles come to rescue, the walkers, my desert camels for those long haul mall ramps, with the bells ringing & dinging, and then for supermarket raids mobility scooting rocking daniel riccardo, but the sinews slow and sputter wire stripped on each threshold and then riding that last wheelchair like a fucking dalek, oxygen bottle on tap like Branson in his space suit drifting assistively on urban streets, fading into a voluntary dream magic, invisible to all eyes losing all the speeds all the spaces all the clicks all the dots like the end of time in a Tarkovsky film.

23. From care and welfare to independent living? Interpreting and assessing the human right to live independently and be included in the community Yvette Maker1

INTRODUCTION Disability studies scholars and disability rights activists have long criticized the dominant medical model of disability. In this model, disability is conceptualized as an individual deficit, usually associated with a medical diagnosis, that inevitably precludes disabled people from usual functioning and participation. In the field of social policy, the medical model has often manifested in ‘welfare-’ or ‘charity-based’ responses that position disabled people as victims of circumstance who need services to compensate for, but not address, their exclusion from society (Kanter, 2003). Several alternatives to these medical and welfare-based approaches have been proposed, the most influential of which is the social model of disability. According to the social model, disability is best understood as a consequence of social barriers like inaccessibility, discrimination and stigma, either alone or in interaction with a person’s physical, sensory, intellectual or psychosocial impairments (Kayess & French, 2008, pp. 6–7). Social policies based on this model remove barriers and provide what is required for disabled people to enjoy all aspects of economic, social and cultural life in areas including housing, education, community services, employment, and disability assistance and support. In regard to disability assistance and support, which is the focus of this chapter, a shift from a medical or welfare model to a social model necessitates two kinds of reform. The first is the abolition of systems based on the provision of ‘care’ in large or small residential institutions, or by family members with little or no assistance from the state. The second is the introduction of policy, law and other measures such as personal assistance and other services that facilitate disabled people’s independent living, choice and inclusion in the community. This ‘independent living’ approach was originally developed by activists and scholars in the UK and the US and has been characterized as being fundamental to the realization of the rights of disabled people (Evans, 2003; Hammarberg, 2012). It has also, however, been subject to criticism on the basis that it is not relevant or useful for all disabled people in all parts of the world, nor for others – like family members and paid workers – who are involved in relations of assistance and support. The United Nations Convention on the Rights of Persons with Disabilities (‘the CRPD’) necessitates a related ‘paradigm shift’ from a medical model to a human rights approach which, like the social model, characterizes disability as resulting from the interaction of impairments and ‘various barriers’ that hinder disabled people’s ‘full and effective participation in society on an equal basis with others’ (MacKay, 2007, p. 328; CRPD, 2008, art. 1). Article 19 of the CRPD articulates the implications of this for the provision of support and assistance. It obliges 274

From care and welfare to independent living?  275 parties to the CRPD to ensure disabled people’s enjoyment of ‘the right to live independently and be included in the community’ through a range of measures, including providing the right to choose where and with whom one lives and how one participates in the community, and guaranteeing access to resources and services to make this possible. The phrasing and content of Article 19 was clearly influenced by prior scholarship and advocacy on ‘independent living’ and, in this chapter, I explore the potential of Article 19 to facilitate the implementation of this approach in place of problematic welfare and care. I also consider its promise in terms of overcoming concerns about the limits of prior formulations of the independent living approach and hence promoting the realization of the rights of all disabled people, their families and supporters.

1.

REJECTING WELFARE-BASED CARE IN FAVOUR OF INDEPENDENT LIVING

a.

The Disempowering Nature of Welfare and Care

Welfare or charitable approaches to the provision of care and support for disabled people have long been criticized for treating disabled people’s social and economic exclusion as an inevitable and natural consequence of their impairments (Waddington & Diller, 2002). That is, the assumption that disability is a personal, medical deficit has led to the introduction of social measures to provide ‘care’ to meet disabled people’s basic needs – as defined by medical professionals, social workers, family members and others – rather than facilitating their inclusion and rights enjoyment (ibid.; Bartlett, 2012). In many high- and middle-income countries, these kinds of care were, and often still are, provided in institutional settings (HRC, 2016, para [19]). State-funded care in a person’s own home and community has more recently become available in some of these countries – often as part of deinstitutionalization efforts – but these measures have generally been underfunded and limited in availability. In low- and middle-income countries where both institutions and community-based care have been absent, and in other places where community-based options are inadequate, disabled people rely on family members and other informal supporters to help with the activities of daily living (ibid.). Scholars and activists have long criticized the welfare approach to care as it manifests in institutional, community and family settings. This is because it positions disabled people as entirely passive and dependent on others for care and protection (Keith, 1992, p. 169). It focuses on disabled people’s limitations and precludes them from defining their own needs and aspirations or deciding (or even having a say in) where, how and by whom these should be fulfilled (Bartlett, 2012, p. 758). It is also ‘built on the idea of separation’ (Waddington & Diller, 2002). That is, a fundamental feature of care is the segregation and isolation of disabled people away from the rest of the community in institutions or family homes (Hammarberg, 2012, p. 27). This creates the conditions in which exploitation, neglect and abuse thrive, and in which disabled people are unlikely to enjoy fulfilling and flourishing lives on the same basis as others (Nosek et al., 2001; Community Affairs References Committee (Australia), 2015). While institutional care is often characterized as the worst form of care, community- and family-based care have also been heavily criticized for their negative consequences for disabled people. For example, eligibility for state-funded ‘care in the community’, where available, has usually been restricted to those who meet stringent medical criteria (Ungerson,

276  Research handbook on disability policy 1997, p. 374; Waddington & Diller, 2002). Entitlements have also tended to be calculated using coarse ‘proxies of need’ – that is, ‘ideal images or categories of need that pa[y] scant regard to individual circumstances’ – meaning they are not flexible or personalized to an individual’s characteristics, preferences and requirements (Quinn & Doyle, 2012, pp. 75–76). Unpaid family care is potentially even more problematic. It has been described as ‘the most exploitative of all forms of so-called care’ on the basis that it inhibits the opportunities of both the person providing care and the person receiving it, unless both parties have other options (Brisenden, 1989 as quoted in Rummery & Fine, 2012, p. 327). Consistent with the medical model, the negative personal and economic consequences of these arrangements for ‘family care-givers’ – the majority of whom are women – are also often attributed to the fact of their family member’s disability, leading disabled people to be characterized as ‘burdens’ on their families and/or the state (Morris, 2001, p. 7; see also Morris, 1991a, p. 143). A lack of alternatives to family care can also increase the likelihood that disabled people will be neglected, abandoned or placed in institutions by their families (HRC, 2016, para [20]). b.

Independent Living as an Empowering Alternative to Care

Critiques of welfare-based care and its negative consequences have been accompanied in some places by calls for policies and laws to support independent living as an empowering alternative for disabled people (DeJong, 1979). Independent living claims originated in the 1960s and 1970s in the US and UK, led by activists with mobility impairment including the Rolling Quads at the University of California, Berkeley, and Britain’s Union of the Physically Impaired Against Segregation. These claims were later taken up by broader movements in those countries and other parts of the world (Shapiro, 1993; Barnes, 2003; Shakespeare, 2013). A separate but related stream of activism, led primarily by the parents of people with intellectual or learning disability, also pursued deinstitutionalization and access to ‘community living’ for all (Cocks, 1997; Roeher Institute, 1996). Multiple formulations of the independent living approach have been articulated, and these share the central assertion that disabled people should have ‘the same range of options and the same degree of self-determination that non-disabled people take for granted’ (Ratzka, 2009 as quoted in Townsley et al., 2009, p. 7). The goal of independent living is not that disabled people can ‘perform every task themselves’, but rather that they have ‘control over their lives’ (Brisenden, 1989, p. 9 as quoted in Shakespeare, 2006, p. 139). Consistent with the social model on which it is premised, the independent living approach requires both the removal of barriers to living independently (such as inaccessible housing and community services) and the provision of supports to maximize disabled people’s choices about where and how they live, and their wider inclusion and participation in all facets of life (Shakespeare, 2013, p. 216). Consequently, policies and other measures to facilitate independent living must differ from welfare-based approaches in several respects. First, disabled people must have a right to make their own decisions and have choices about where they reside, who (if anyone) they reside with, and how they spend their time (Morris, 1993, p. 49). Medical and other health professionals must not be in charge of these decisions (see DeJong, 1979, p. 443). Second, disabled people must have access to funding and services that are tailored to meet their individual disability-related needs and must decide who assists them and with what tasks (Shakespeare, 2006, pp. 139–140; Hammarberg, 2012, pp. 11–12). ‘Personal assistance’ – whereby a person with support needs employs an assistant to perform practical tasks necessary

From care and welfare to independent living?  277 for independent living – is commonly identified as the best way to achieve this (Watson et al., 2004, p. 335). This requires States to provide cash payments or budgets that a person can use to employ assistants and purchase other supports, rather than pre-determined, inflexible packages of services usually provided in institutions or the community (Glasby & Littlechild, 2006, p. 19; Dickinson et al., 2014). Independent living will only be achievable if disabled people have access to a range of other services, including housing, transport, education, employment and medical and community services (see Townsley et al., 2009, p. 8). c.

Limitations and Gaps in the ‘Independent Living’ Approach

While independent living has been described as being central to the empowerment and liberation of disabled people, it has nevertheless been subject to criticism from both within and outside disability studies scholarship and activism (Shakespeare, 2006, pp. 135–136). In this sub-section, I identify three relevant critiques. i.

Independence is not the norm or goal of many disabled people (or their families) The first prominent set of criticisms of the independent living approach, levelled predominantly by disability studies scholars, relates to the apparent prioritization of self-sufficiency, autonomy and individual decision-making as the aspiration and appropriate living situation of all disabled people. This has been characterized as being ‘male-centric’ (Pinto, 2008, p. 124) and inconsistent with the experiences and preferences of many disabled people. These may include people who live in multiple relationships of care and support, such as disabled mothers and other parents, and people – such as some people with cognitive disability – who cannot and/or do not want to live alone and employ personal assistants (Morris, 1991b, 1993, p. 154; Kröger, 2009, p. 410). Scholars in the Global South have also noted that independent living is not relevant to all disabled people in African, Asian and Pacific cultures where communal living and interdependence among relatives and community members is the norm for disabled and non-disabled people alike and where, even if they are desired, alternative forms of support are not generally available (Oka, 1988; Kamundia, 2013, p. 59). In the 1980s and 1990s, disability studies scholars responded to some of these criticisms by clarifying that ‘independence’ was not meant to refer to living alone or not requiring help, but rather indicated the need for people to have the power to decide how support is provided and for what purpose (see Morris, 1993, p. 23, and quoting Brisenden, 1989). However, in places where resources and services were unavailable and disabled people were most likely to be segregated and excluded in their family home, the relevance of independent living – and particularly direct payments and personal assistance as alternatives to institutionalization – was not clarified (Oka, 1988). ii. Choice may be narrowly construed, especially in marketized systems A second critique of the independent living approach relates to its prioritization of ‘choice’ and ‘control’ for disabled people. This ignores the fact that ‘some people are in a better position to demand or choose than others’ (Daly, 2012, p. 179). This is the result of a range of factors including a person’s access to information, resources and support, and their desire and ability to make decisions and advocate for their interests. The focus on choice raises particular concerns when independent living claims are narrowly construed by governments to refer

278  Research handbook on disability policy to consumer choice – that is ‘the right to make individual choices within a free market’ for support (Needham & Dickinson, 2018, p. 734). Markets in which cost minimization and profit are the primary drivers are unlikely in practice to offer disabled people a range of alternatives that are ‘definitely desired’ (Beresford & Sloper, 2008, p. 2; Rummery & Fine, 2012, p. 337; Fawcett & Plath, 2014, p. 754). This is related to broader concerns about disabled people’s rights claims being co-opted for neoliberal and austerity-related ends, namely, to justify the abstention or withdrawal of the state from direct service provision in favour of cheaper marketand family-based supports (Spandler, 2004). While purporting to offer disabled people more options and power in determining how their needs are met and how they live their lives, these measures can also place greater responsibility on individuals and families to meet their own needs and, where entitlements to independent living or other support-related funding are available, to actively manage those entitlements (Ferguson, 2007). iii.

Independent living systems may impede the rights of personal assistants and other supporters A third prominent critique of independent living has concerned its impacts on personal assistants and others employed by disabled people to provide support or assistance. If independent living schemes are implemented without adequate funding or regulation (as has been documented to be the case in the UK, Australia and elsewhere), workers face low pay and poor working conditions, such as job insecurity, unpredictable hours and exposure to exploitation and abuse (Ungerson, 1997, p. 376; Rummery & Fine, 2012, p. 329). Most workers in this field are women, and many in richer countries are also migrant workers (Williams, 2001; Ehrenreich & Hochschild, 2003). This raises the possibility that shifting from welfare-based care to an independent living approach, while addressing the oppression of disabled people, creates the conditions for the oppression of others (Hughes et al., 2005, p. 263). Poor working conditions may also be mutually detrimental, as they are unlikely to produce high-quality support and assistance (Rummery & Fine, 2012, p. 337). In the next two sections, I turn to whether these three sets of critiques find a solution in Article 19 of the CRPD.

2.

ACCESS TO SUPPORT FOR INDEPENDENT LIVING UNDER ARTICLE 19 OF THE CRPD

a.

The Human Right to Live Independently and be Included in the Community

Article 19, which is titled ‘Living independently and being included in the community’, has been characterized as ‘one of the most important rights’ in the CRPD (Fiala-Butora et al., 2018, p. 530). It has been described as having relevance across the life course and in multiple areas of disabled people’s participation – ‘as a child, a student, a worker, a voter, a family member, senior citizen and so on’ (Gooding, 2018, p. 39) – as well as being inherently linked with the enjoyment of other rights (Hammarberg, 2012, p. 8). Most relevantly for present purposes, it has also been characterized as an articulation of independent living claims in international human rights law, and as a legal requirement that necessitates the reform of care- and welfare-based policy and law (CRPD Committee, 2017, paras [4], [28]). The introduction to Article 19 states that parties to the CRPD:

From care and welfare to independent living?  279 recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

The article then sets out three elements of States’ obligations in relation to this right: (a) ensuring that disabled people choose where and with whom they live and are not forced into particular living arrangements; (b) ensuring access to support services; and (c) making community services and facilities available and responsive to disabled people’s needs. While these three elements are clearly interlinked, the second is most directly relevant to the matters under discussion in this chapter. It affirms that States must ensure that: (b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.

Independent living, inclusion, choice and related concepts are mentioned multiple times in the CRPD prior to their appearance in Article 19, indicating their significance to disabled people’s enjoyment of all the rights guaranteed by the Convention. For example, the Preamble to the Convention affirms ‘the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices’ (CRPD, 2008, preamble (n)). Respect for ‘inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’ and ‘the full and effective participation and inclusion in society’ are also described as two of eight ‘general principles’ that are supposed to guide States parties in implementing the Convention (ibid., art. 3(a), (c)). Sarah Arduin (2018, pp. 92, 96–97) has noted that these references to autonomy, independence of persons and participation in society are ‘a peculiarity’ of the CRPD and ‘novel’, not appearing in those terms in other international human rights treaties. The concepts of independence, independent living and being included in the community are not defined in Article 19 or elsewhere in the CRPD and are only mentioned in the title of Article 19. The CRPD Committee has offered such definitions and has discussed the connection between these concepts and the right set out in Article 19 in subsequent commentary. Most relevantly, it issued a General Comment on Article 19 (‘the General Comment’) in 2017 (CRPD Committee, 2017). General Comments are produced by United Nations treaty bodies for a range of purposes, including to guide the interpretation and/or implementation of specific treaty provisions (Ando, 2008, para [2]). While this guidance is not binding on parties to the CRPD, it does constitute a comprehensive and influential guideline for how they should interpret and work towards meeting their obligations. In this case, the guidance includes how States’ obligation to provide support for independent living and community inclusion should be interpreted and met. b.

An Explicit Rejection of Welfare and Care-based Approaches in Favour of Independent Living

The General Comment indicates that States’ compliance with Article 19 requires a departure from welfare- and care-based approaches to disability support. It also signals the influence of the independent living approach on the formulation and interpretation of the right. In regard to the former, the CRPD Committee (2017, para [28]) states early in the General Comment that

280  Research handbook on disability policy support services provided pursuant to Article 19 ‘must be considered a right rather than a form of medical, social or charity care’. In regard to the latter, the Committee describes access to services and supports as ‘a precondition for independent living within the community’ (ibid., para [29]). It defines independent living in a manner similar to the formulations described in section 1 of this chapter, namely, to mean ‘that individuals with disabilities are provided with all necessary means to enable them to exercise choice and control over their lives and make all decisions concerning their lives’ (ibid., para [16]). This means States must provide services and supports as a matter of dignity and equality – because they are required for some disabled people to enjoy the same rights as others – rather than as partial compensation for people’s difference and exclusion (Degener & Quinn, 2002; Quinn & Degener, 2002, p. 26). c.

Features of Article 19 that Align with the Independent Living Approach

The Committee describes four features of Article 19-compliant ‘support’ that are also consistent with earlier articulations of an independent living approach. The first is the need for services and supports to be ‘tailored to the specific activities and actual barriers to inclusion in the community’ experienced by the person, which the Committee terms an ‘individualization’ or ‘personalization’ approach (CRPD Committee, 2017, para [63]). This focus on barriers that produce disability reflects the CRPD’s adoption of a social model of disability (see CRPD, 2008, preamble (e)). A second familiar theme in the General Comment is the Committee’s assertion that individualization requires that a person can exercise choice in regard to all elements of support. This includes choice of service provider, choice of service, and choice and control over all aspects of the support that is provided and how it is used (CRPD Committee, 2017, para [29]). The Committee explains that this means a person must have multiple options that meet their personal requirements and preferences, that particular arrangements must not be imposed on them, and that they can reject undesired options (ibid., paras [25], [29], [36]). Gerard Quinn and Suzanne Doyle (2012, p. 73) observe that this entails a shift ‘away from [the] gross proxies of need (with equally gross services)’ that are used to allocate resources in welfare systems. Thomas Hammarberg (2012, p. 19) has similarly described this as entailing a shift from ‘the subtly-patronising and sterile language of needs and services… towards enabling people to get on with their lives as they want to craft them’. Another essential feature that distinguishes this individualization from oppressive ‘care’ is that individuals’ requirements and choices, not the interests of service providers, should determine what support is provided (CRPD Committee, 2017, para [52]). Article 19 echoes independent living claims in a third sense – by naming personal assistance as a specific form of ‘in-home, residential and other community support services’ to which States must ensure disabled people have access (CRPD, art 19(b)). In the General Comment, the CRPD Committee (2017, para [16]) defines personal assistance as ‘person-directed/“user”-led human support available to a person with disability and… a tool for independent living’, and suggests it has four essential features. These, too, are consistent with the independent living model earlier defined by disability rights activists and scholars. They are ‘funding… provided on the basis of personalized criteria’; control of the service by the disabled person (including the option to design one’s own service); the existence of a ‘one-to-one relationship’ whereby the disabled person recruits, trains and supervises the personal assistant and is not

From care and welfare to independent living?  281 required to share assistance with others; and control and management of service delivery by the disabled person (ibid.). The CRPD Committee also articulates a comprehensive model of disability-related support, identifying a range of measures beyond personal assistance that must be provided pursuant to Article 19. These include cash transfers that cover disability-related expenses; accessible information that enables people to make choices and decisions about independent living and support services; and theoretical and practical training on independent living for all people involved in disability-related services (CRPD Committee, 2017, paras [62], [64], [65]). The Committee also recommends establishing criteria for accrediting and assessing service providers, and access to legal advice, remedies and support so that disabled people can enforce their right to live independently in the community (ibid., paras [65], [66]). Importantly, the CRPD Committee discusses the need for States to establish mechanisms to monitor service providers and detect isolation, institutionalization, abandonment and violence – in other words, the problematic features of welfare- and care-based provision in the community and in institutions (ibid., paras [1], [65]). These problems are attributed to inappropriate policies and laws, and inadequate supports, not to impairment per se, again reflecting the strong influence of the social model of disability on the formulation of Article 19 and the CRPD more broadly (Kayess & French, 2008). A fourth feature of the CRPD Committee’s interpretation of Article 19 that is consistent with the independent living approach, and replies to particular criticisms of traditional ‘care’ systems, is its discussion of the role of family in the provision of support. The Committee acknowledges that disabled people in many parts of the world require support from family members due to the unavailability or inadequacy of alternatives (ibid., paras [1], [25]). Consistent with the social model of disability, the Committee characterizes these failures (and not the disabled person’s impairments) as the cause of harms or disadvantages to families, noting for example that ‘[t]he absence of community-based support and services may create financial pressures and constraints for the family of persons with disabilities’ (ibid., para [87]). The solutions it proposes for this problem are also structural, namely, to ensure that disabled people have adequate support and that family carers also have ‘access to support services so they can in turn support their child or relative to live independently in the community’ (ibid., para [67]). This must include ‘support, information and guidance’ for families of disabled children so children can remain with their families (ibid., para [75]). Support for families is also necessary to alleviate poverty, with the Committee noting the connection between family carers’ inability to access the labour market and poverty (ibid., para [67]). Significantly, the Committee directs States to ensure that informal (family) support is not the only option available to disabled people (ibid., para [25]). It also observes the reciprocal relationship between Article 19 and the right of disabled people to recognition of their legal capacity set out in Article 12, which holds that disabled people – not their family members, service providers or others – must be the ones who make decisions about support (CRPD Committee, 2017, paras [26], [27]; Fiala-Butora et al., 2018, p. 557). The Committee also acknowledges the possibility that disabled people’s human rights may be violated by family members in the family home. To address this, it directs States to adopt measures and mechanisms to detect violence and protect disabled people from being hidden or isolated (CRPD Committee, 2017, para [52]; Fiala-Butora et al., 2018, p. 550).

282  Research handbook on disability policy

3.

DOES ARTICLE 19 ADDRESS THE LIMITATIONS OF INDEPENDENT LIVING?

The phrasing of Article 19 and its interpretation clearly align in important ways with the calls for independent living that preceded it. It also addresses some, although not all, of the criticisms of earlier formulations of independent living described in section 1. a.

A Broad – but Still Limited – Definition of Independence

Article 19 and the CRPD Committee’s guidance on its interpretation partly challenge one of the main criticisms of independent living above – namely, that it implies that independence, autonomy and self-sufficiency are the goal and desire of all disabled people. This does not reflect the reality of many people’s interdependent lives and may not be relevant for disabled people living in cultures where family and communal living is the norm (Morris, 1991b; Kamundia, 2013). In its references to States’ obligations to ensure that disabled people have a choice about where and with whom they live, and to provide access to services to fulfil those choices and facilitate inclusion in the community, the text of Article 19 arguably invites a broad interpretation of the right that can encompass interdependence, family involvement and a range of culturally relevant forms of support (see Hammarberg, 2012, p. 8). However, comments made by several States parties during the drafting of Article 19 – and research showing that a diversity of definitions and interpretations of independent living have proliferated in disability policy – demonstrate the risk that states and/or service providers will continue to adopt definitions that have negative consequences for some disabled people (see Townsley et al., 2009). This indicates a need for clearer guidance on the interpretation and implementation of Article 19. For example, during the drafting of the CRPD, delegations for Mali, Thailand and Kenya expressed concerns that the concept of independent living would be interpreted narrowly to refer to ‘independent living movements’ that did not exist in all parts of the world, or that Article 19 may be read to imply that complete independence – rather than interdependence – was the necessary outcome of service provision (UN Enable, 2004, 2005). India similarly indicated that it did not consider ‘living independently’ to encompass living with family (Ad Hoc Committee, 2004). Related observations have been made subsequently, with Elizabeth Kamundia (2013, p. 54) for example noting that ‘“independence” is not a particularly African ideal’ and that implementing Article 19 via the introduction of individualized support services would be inconsistent with usual, communal ways of living in Kenya. Further complicating the issue, Teodor Mladenov (2013, pp. 79–80) has noted that some translations of Article 19 into languages including Bulgarian, French and Russian have given the English term ‘living independently’ meanings that are closer to ‘autonomy’ or ‘self-standing living’. János Fiala-Butora and colleagues (2018, p. 535) suggest that the ‘overall agreement’ in the CRPD drafting process was that the term ‘“living independently”… should be handled with caution’. This caution – and attempts to surpass it – are apparent in three elements of the General Comment on Article 19. First, the CRPD Committee (2017, para [17]) acknowledges the risk of the terms ‘independent’, ‘community living’ and ‘personal assistance’ being misused or misinterpreted in a manner that does not meet the requirements of Article 19. As I described above, it offers detailed definitions of independent living and related terms, including emphasizing that the

From care and welfare to independent living?  283 enjoyment of the right to live independently and be included in the community does not require that disabled people live alone, nor that they are able to carry out daily activities by themselves (ibid., para [16]). Second, the Committee explicitly identifies living with family as one of the range of choices of living arrangement that States must provide, as long as it is not the only option available to the disabled person (ibid., paras [30], [31], [55]). It further explains that these arrangements must be rights-based, meaning States should ‘empower family members to support the family members with disabilities to realize their right to live independently and be included in the community’ (ibid., para [55]). Here, the CRPD Committee recognizes the interdependence of disabled people and their families, with the provision of information and support (including financial support) to families being identified as essential to protecting the rights of all (ibid., para [67]; see also HRC, 2016, para [62]). Third, the CRPD Committee seeks to clarify that independent living and being included in the community is ‘a basic concept of human living around the globe’, that Article 19 ‘reflects the diversity of cultural approaches to human living’, is not ‘biased towards certain cultural norms and values’ and must be ‘effectively realized in different economic, social, cultural and political contexts’ (CRPD Committee, 2017, para [23]). Unfortunately, the Committee does not provide much information on how this might be achieved, which creates the risk that States will misinterpret Article 19 or dismiss it as irrelevant to their circumstances. The guidance the CRPD Committee does offer is concerned with individuals’ access within States; it requires States to ensure that individuals are not excluded from enjoying their rights on the basis of one or more dimensions of difference, such as race, descent, sex, pregnancy and maternity, gender identity, sexual orientation, national, ethnic, indigenous or social origin, among others (CRPD Committee, 2017, para [8]). It does not give examples or advice on how key elements of Article 19, such as living independently, community inclusion and access to services, might be defined in different cultural contexts, including those where resources for disability support services are limited. This is despite the availability of many such ‘culturally diverse’ examples of personal assistance, peer support, family-based and other supports that can inform the ‘community-based’ implementation of Article 19 (TCI-Asia, 2016, p. 3; HRC, 2016, para [61]; see also Oka, 1988; Gooding, 2018, pp. 51–52). b.

Limited Guidance on the Meaning of ‘Choice’ in a Human Rights Perspective

The second commonly cited concern about the independent living approach described in section 1 of this chapter was only briefly mentioned by the CRPD Committee in the General Comment. This is the concern that references to ‘choice’ and ‘control’ will be interpreted narrowly to require the provision of consumer choice in a private or quasi-private market for services. A superficial reading of Article 19 and the CRPD Committee’s interpretation would suggest that ‘choice’ is assumed to inevitably follow from an individualized approach to the provision of disability support, despite evidence to the contrary emerging from countries where market or quasi-market systems have been introduced (Needham & Dickinson, 2018). The Committee did not identify marketization or privatization as problems per se, noting only that States must ‘take all necessary measures to ensure that no rights enshrined in Article 19 are violated by the State or by private entities’ (CRPD Committee, 2017, para [40]). Catalina Devandas Aguilar offered some additional guidance in this regard during her term as Special Rapporteur on the Rights of Persons with Disabilities, noting for example that

284  Research handbook on disability policy the creation of personalized schemes should not result in States ‘relinquishing their primary responsibility to ensure access to appropriate support’ and that, regardless of the nature of the support that is provided, ‘States must adopt a comprehensive regulatory and monitoring framework that involves a due diligence obligation’ (HRC, 2016, paras [56], [60]). In relation to personalized services, Devandas Aguilar also flagged the need for measures to build individuals’ capacity to manage their own funding and services, and to ensure the availability of a wide range of providers appropriate to a diversity of needs and locations (ibid., [62]). The CRPD, and the CRPD Committee, do contemplate several other mechanisms that would contribute to these goals. However, as Piers Gooding (2018, p. 53) has previously suggested, it would perhaps have been useful for the CRPD Committee to be more explicit in its discussion of these issues. Most broadly, the CRPD obliges parties to ‘closely consult with and actively involve’ disabled people (including disabled children) through their representative organizations in the implementation and monitoring of the Convention (CRPD, arts 4, 33(3)). In the General Comment on Article 19, the CPRD Committee (2017, para [56]) emphasizes the importance of this close consultation with, and active involvement of, the diversity of persons with disabilities when States are developing support services in the community. If genuinely implemented, this could also offer protection against narrow and regressive readings of ‘choice’ and ‘control’. Other recommendations in the General Comment indirectly address known shortcomings of privatized and marketized services, including the tendency for ‘consumers’ to have inadequate information and support for making choices and managing services, and failures of States to provide sufficient funding for services for some people with cognitive disability and people who require ‘a high level of personal service’ (CRPD Committee, 2017, para [21]). For example, the Committee directs States to provide ‘timely, up-to-date and accurate information’ in multiple accessible formats to support people’s decision-making about independent living and support services (ibid., para [64]), and asserts that Article 19’s application to all disabled people means that neither a person’s legal capacity status nor the level of support they need should limit their enjoyment of the right, even where non-institutional options are considered to be more expensive (ibid., paras [20], [21]). If augmented by a clearer discussion of the shortcomings of marketization, and how they might be overcome, the risk of ‘choice’ and ‘control’ being read narrowly may be further reduced. c.

The Rights of Personal Assistants are Not Adequately Addressed

While the reciprocal nature of the rights of disabled people and their families is acknowledged in the General Comment, the rights of personal assistants and other workers employed by disabled people to support their independence and community inclusion receive considerably less attention. Consequently, the criticisms of the disempowering consequences of independent living for workers that I described in section 1 of this chapter are not addressed (Hughes et al., 2005). The CRPD Committee (2017, para [16]) offers a definition of personal assistance that is (appropriately) focused on the rights of the users of that assistance in terms of personalization, control and choice. Some of these features – most notably the need for adequate funding for support to be personalized to the individual – should facilitate the provision of decent pay and conditions for workers, because workers who are not appropriately remunerated, and do not have the time and skills to provide personalized support, will be unlikely to meet these requirements (Ungerson, 1997; Rummery & Glendinning, 2000). However, the CRPD Committee

From care and welfare to independent living?  285 does not make this point explicitly, and only alludes to workers’ rights in vague terms by stating that funding for personal assistance should ‘take into account human rights standards for decent employment’ (CRPD Committee, 2017, para [16]). Further guidance for States may be necessary to ensure that the rights of all parties to support relationships are upheld (HRC, 2016, para [62]; Maker, 2022).

CONCLUSION Prior to the development of the CRPD, Lisa Waddington and Matthew Diller (2002) noted the danger that disability rights criticisms of harmful ‘welfare’ could result in the abolition of flawed, but often valuable, forms of assistance for disabled people with no guarantee that they would be replaced by rights-based alternatives. Article 19 of the CRPD, and the CRPD Committee’s guidance on its interpretation, offer a form of protection against this in relation to support and personal assistance. They provide a blueprint for the replacement of welfare-based ‘care’ with services, supports and other measures to enable disabled people to live the lives they want with the supports they require to do so. This formulation of the human right to live independently and be included in the community was clearly influenced by the independent living approach earlier developed by disability rights activists and scholars. History suggests the potential for this approach to be interpreted narrowly, and in a manner that is inconsistent with the reality and rights-related needs of disabled people, and those of their informal and formal supporters. The drafters of Article 19 and the CRPD Committee were clearly aware of these risks and sought to counter them by, for example, identifying not only living independently, but also community inclusion, choice, access to funding and individualized services as elements of the right, and articulating the role of family and community in its realization. Unfortunately, some issues are not identified, leaving open the possibility of inadvertent or wilful misinterpretation. These gaps include the shortcomings of marketized and privatized forms of ‘choice’, the intertwined nature of the rights of people who use personal assistance and the workers who are paid to provide it, and the implementation of Article 19’s requirements about services and supports in places where funding and services may be unavailable and community-based solutions are required. Further authoritative guidance on these matters, developed in consultation with disabled people and their representative organizations, could promote the realization of the right for more disabled people in a wider range of contexts.

NOTE 1.

Start of endnote. Thanks to Claire Spivakovsky for her thoughtful comments on several iterations of this chapter and to Piers Gooding for his assistance in locating relevant materials. End of endnote

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24. Sexuality and relationships: informing rights-based policy and practice through research with and by people with intellectual disability in Australia and Aotearoa New Zealand Patsie Frawley and Brigit Mirfin-Veitch

INTRODUCTION Surveillance of sexuality, restriction of sexual expression and limiting opportunities for intimacy are common experiences imposed on people with intellectual disabilities in the disability services they use, in families and within their broader lives. Narrative research with people with intellectual disabilities spanning two decades has documented these experiences (Johnson, Frawley, Hillier, & Harrison, 2002; Traustadottir & Johnson, 2000; Frawley & O’Shea, 2020; Marks, O’Shea, McVilly, Frawley, & Despott, 2020; O’Shea & Frawley, 2021). Reflecting on the sexuality and relationship experiences of people with intellectual disabilities in his book Already Doing It, Michael Gill refers to the sexuality of people with intellectual disabilities as “extraordinary sexuality” because it is framed by society, services and policy as being without intimacy, not requiring privacy, determined by others and as not being diverse (Gill, 2015). The body of research that has engaged with the stories of people with intellectual disabilities articulates that it is the oppressive and restrictive environments rather than individual incapacity that impact most on the kinds of negative experiences that are more common for people with an intellectual disability, including a higher risk of sexual violence and abuse, poorer sexual health and less access to self-determined choices and opportunities about reproduction and parenting. Despite the global ‘turn’ to a rights framework in disability policy supported by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the story of sexuality in the lives of people with intellectual disabilities continues to lack a rights focus. Domestic policy in signatory countries like Australia and Aotearoa New Zealand1 looks to the CRPD for guidance and a framework to inform their contemporary disability policy; however, the CRPD is silent at worst and opaque at best about sexuality rights. Marta Schaaf (2011) in a review of the deliberations of the Ad Hoc Committee on sexuality rights notes that the right to ‘experience sexuality’ was removed over time in response to religious and cultural pressure from some countries, and an overwhelming focus on vulnerability to sexual abuse took its place. As a result, sexuality rights are not explicitly referred to in the CRPD. Instead, sexuality is conflated with marriage and the development of a family in Article 23: Respect for home and family, which states people with disabilities of “marriageable age” have the right to “…marry and found a family” (UN, 2006). Prevention of abuse is situated in Article 16: Freedom from violence and abuse, and tacit acknowledgement of the sexual rights of people with disabilities 289

290  Research handbook on disability policy are briefly considered in Article 25, which states people with disabilities have the right to “free or affordable health care and programmes … including in the area of sexual health” (UN, 2006). This last mention is somewhat ironic when the Convention fails to explicitly promote the right to express sexuality and be sexual which is a precursor to the need for sexual health services. Schaaf (2011) discusses these issues with reference to Foucault’s work where he asserts that “abnormality and sexuality” are both subject to “governmentality” (Foucault, 1984 in Schaaf, 2011, p. 113), referring to the power relations used to shape, conduct and therefore determine how people live their lives. This sense of governmentality, Schaaf argues, underpinned the deliberations that resulted in the CRPD failing to assert the equal sexual rights of people with disabilities. This chapter reflects on the policy contexts in Australia and New Zealand that are currently in place governing the lives of people with intellectual disabilities to consider how fit for purpose they are in relation to sexuality. It also draws on research from both countries that has aimed to shift the direction of the debate around sexuality from control and ‘othering’ to equal rights and how this research has and can shape policy and practice in sexuality support. The dual goal is to prioritize and hear the voices of people with intellectual disabilities and to carry these voices into the advocacy domain to inform policy. While not advocating for the sexuality of people with intellectual disabilities to be ‘governed’ by policy, this chapter highlights that without a rights-promoting framework about sexuality there is likely to be ‘rights’-restricting policy (and practice) in place that limits the realization of the right to freedom of sexual expression, and respect for the diverse sexuality of people with intellectual disabilities. As Swedish researcher Julia Bahner notes in her work on sexual facilitation for people with disabilities, without a positive framing of sexuality and sexual expression within laws and policies that underpin the work of disability support, sexuality needs are left ‘open for negotiation’ and are unregulated. This she argues leads to unequal opportunities for people with disabilities to express their sexuality, being dependent on their ability to ‘negotiate’ for their sexuality rights to be respected and supported. Not all people with disabilities have the same opportunities to do this negotiating (Bahner, 2021, p. 171).

BACKGROUND Australia and New Zealand were early signatories to the UNCRPD (2007/2008), signalling a commitment to the realization of the rights enshrined in the Convention in their domestic disability and social policy, and in broader social reform for inclusion of people with disabilities. Both countries have overarching disability legislation and policy that aligns with Article 4(1) “to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability” (UN, 2006). While as noted above sexuality rights are not explicitly enshrined in the Convention, the general obligation to realize ‘all human rights and fundamental freedoms’ provides a framework for advocacy on sexuality rights. A number of General Comments2 associated with the CRPD have been developed in recent years that have raised questions and sought to address specific inequalities and potential areas of discrimination that are not directly addressed in the words of the Convention. Of particular note are those that have addressed Sexual Orientation and Gender Identity (SOGI), consultation with and acknowledgement of LGBTQIA+ people

Sexuality and relationships  291 with disabilities (General Comment 7, 2018), and the rights of women and girls with disabilities focusing on gender-based violence and abuse and reproduction (General Comment 3, 2016). These General Comments add to the intention of the CRPD to be the platform for the progressive realization of all human rights and to provide signatory States with a basis for advocacy on sexuality, sexual identity and sexual expression rights. While at a domestic level both countries have this opportunity to frame sexuality as a right in disability policy, a review of the disability policy framework in Australia and New Zealand suggests that the lack of a clear articulation of sexuality rights in the Convention may lead to a lack of visibility and promotion of sexuality rights in domestic policy. Australian Policy Context Since July 2013 the Australian disability policy context has been dominated by the National Disability Insurance Scheme (NDIS) which has implemented a national individualized funding model for people with disabilities and jointly focuses on developing inclusive mainstream and community services. While there is much debate about the effectiveness of the scheme, the formal evaluation (Mavromaras et al., 2018, p. xiii) found that the scheme was “delivering the outcomes that it was designed to deliver”. Responding to sexuality needs and opportunities, it seems, was not a part of this design. Research into the scheme and its response to or support of sexuality finds that there has been a lack of focus and, in some cases, barriers to people with disabilities accessing funds and supports for sexuality (Bahner, 2019; O’Shea, Frawley, Leahy, & Nguyen, 2020; Collings, Dew, & Dowse, 2019). In 2019 a disability and sexuality advocacy and sexual assistance organization, Touching Base, in partnership with a peak Disabled People’s Organization and 40 other organizations released a joint position paper calling for the NDIS to develop a sexuality policy (Donovan et al., 2019). In this position paper the need for a rights-based sexuality policy that is “positively framed and places sex, sexuality and relationships within the context of disability supports” (para. 3) was called for. The justification for this included that earlier State-based disability sexuality policy had provided this framework and that the benefits and rights this had enabled were now unachievable and restricted for people with disabilities who depended on government funding through the new national scheme for supports and services. Within this policy void, and with current debates about needs assessment within the NDIS scheme (Dickinson, 2021), sexuality may still be seen and therefore responded to as a ‘niche’ issue for people with disabilities rather than a fundamental human right. The NDIS uses a broad concept of ‘reasonable and necessary’ to determine what can be funded. The NDIS frame what is ‘reasonable and necessary’ as being related to the person’s disability, not including ‘day-to-day’ living costs and that they be value for money, be likely to be effective and work for the participant, and should take into account informal supports used (NDIS Act, 2013, s 34). There is clearly room for negotiation and argument around these criteria and while there is no guidance of whether supports and services relating to sexuality are deemed to be ‘reasonable and necessary’ for funding under the NDIS, in at least one case the courts have intervened. In 2020 the courts ruled that a woman with Multiple Sclerosis could use her NDIS funds for sexual therapy (Henriques-Gomes, 2020). Despite this individual triumph, advocates in Australia remain united on the need for the kind of policy Touching Base have called for. This is a policy that would see supports for sexuality including education, therapy, sexual assistance and sex aides as ‘reasonable and necessary’ for a full and dignified life.

292  Research handbook on disability policy Somewhat positive in the current policy landscape in Australia is the progress made by disability and LGBTQIA+ advocates which has seen some recognition of LGBTQIA+ people with disabilities by the NDIS. In June 2020, the NDIS released the LGBTQIA+ strategy ‘Our bodies, our genders, our relationships’ (NDIS, 2020). Based on consultation with LGBTQIA+ people with disabilities and their allies this strategy provides a framework for ongoing advocacy to acknowledge the sexualities of people with disabilities; however, advocates note the gaps in the strategy and continue to advocate for more work in this area. A significant issue is that there remains a lack of a clear policy in the NDIS for funding support and services for anything considered sexuality-related for people with disabilities. New Zealand Policy Context Within the New Zealand context, the New Zealand Disability Strategy (NZDS) has been the cornerstone of disability policy for two decades. Pre-dating the UNCRPD, New Zealand developed and adopted its inaugural strategy in 2001. Based on the social model of disability, this strategy aspired to a “fully inclusive New Zealand society”. Government commitment to the strategy and its central tenet was evidenced by the establishment of the Office for Disability Issues (ODI) in 2002. The purpose of the ODI “was to provide a focus on disability across government and to lead the implementation and monitoring of the New Zealand Disability Strategy” (Stace & Sullivan, 2020 p. 22). Several iterations of the NZDS have ensued over 20 years, with the most recent reasserting the aspiration of New Zealand becoming a “a non-disabling society – a place where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen” (Office of Disability Issues, 2016). However, like the NDIS, and despite the NZDS asserting commitment to a range of issues and actions considered as being necessary to achieving its fundamental goal over time, it has failed to overtly include sexuality rights and actions to support sexuality rights. The current NZDS covers the period 2016–2026 and centres around eight desired outcomes. Outcome 3: Health and Wellbeing includes a goal designed to ensure that disabled people “do not face barriers accessing mainstream health services because of our impairments, in particular sexual and reproductive health services for disabled women and girls”. Despite this specific mention, there appears to be no action within the associated New Zealand Disability Action Plan (Office for Disability Issues, 2019) that would give real expression to this goal. It could also be seen as perpetuating an understanding of sexuality as solely a health issue. More recent policy initatives such as the Joint Venture Business Unit’s development of a strategy for Eliminating Family Violence and Sexual Violence and the associated Violence Prevention for Diverse Communities Project (Office for Disability Issues, 2021) have focused on sexual violence prevention. While there has been an attempt to consider and seek the experiences and views of disabled people, including people with intellectual disablities, the aforementioned policy vaccuum means this work is occuring in the absence of a strong and positive sexuality rights policy. At the broader system level, Enabling Good Lives (https://​www​.enablinggoodlives​.co​.nz/​) and Mana Whaikaha (https://​manawhaikaha​.co​.nz/​) are major policy initiatives intended to transform the funding, policy and support systems accessed by disabled people in Aotearoa. Values-driven with a fundamental commitment to person-directed supports and people with disabilities having full choice and control over all facets of their lives, both initiatives could hold the potential to lead to greater recognition of the sexuality rights of people with intellec-

Sexuality and relationships  293 tual disabilities. At this point, however, while Australia has been able to make some gains with regard to drawing attention to an absence of sexuality rights within disability policy, recent media reports in New Zealand suggest that choice and control with regard to relationships, intimacy and sexuality continue to be strenuously contested in the case of some people with intellectual disabilities (Nichols, 2021). In a highly reported case (Nichols, 2021), family and service provider views on a person’s right to make supported decisions clashed when a man with an intellectual disability expressed his intent to pursue a relationship with an older man from another country. While the service provider believed that the man had the right and the capacity to make this decision, his parents disputed this view of their son and instigated legal action to stop him travelling. The New Zealand Family Court subsequently approved an emergency action and ordered the man’s passport to be seized. While acknowledging that this case will undoubtedly involve numerous details and nuances that were not publicly reported, it is included here as it illustrates in very real terms the “extraordinary sexuality” that Michael Gill identified as characterizing the experiences of people with intellectual disabilities. Research that highlights the ‘real-life’ experiences of people with intellectual disabilities navigating their sexual and relationship lives is one way we have sought to bring these experiences into work that is informing policy and practice. Research Informing Advocacy and Policy: Australia and New Zealand Participatory inclusive action research approaches have been used in research in both Australia and New Zealand to work with people with intellectual disabilities to tell their stories and engage with the messages from these to inform policy and practice to support sexuality rights. In Australia the research project Living Safer Sexual Lives (LSSL) led by Kelley Johnson and colleagues (Johnson, Frawley, Hillier, & Harrison, 2002), aimed to highlight the sexuality experiences of people with intellectual disabilities through their narratives, to frame the transformation of policy and practice. A life story, narrative research approach was used to co-develop stories with people with intellectual disabilities about sexuality and relationships in their lives. Analysis of these stories by co-researchers with intellectual disabilities alongside academic researchers and disability advocates resulted in the publication of a training programme to provide disability services staff, families and people with intellectual disabilities with a unique opportunity to explore ideas of sexuality and relationships within a rights framework (Frawley, Johnson, Hillier, & Harrison, 2004), and a policy-focused report. This report included 12 recommendations for policy and practice reform, resulting in the development of a new sexuality rights-framed ‘Human Relations and Sexuality’ policy (DHS, 2006). This policy document still frames sexuality and relationship practice in the state of Victoria’s government operated and funded services (DFFH, 2021). The LSSL work was extended in 2012 through the Sexual Lives and Respectful Relationships (SL&RR) programme (Frawley & O’Shea, 2020), which has led to a decade-long collaboration between academic researchers, people with intellectual disabilities and disability, sexual health and sexual assault services and professionals to promote positive relationships and sexuality rights with people with intellectual disabilities across Australia advocating for rights-focused policy and practice in participating organizations. After engaging with some of the original LSSL stories, and learning about the evolving SL&RR programme in Australia, a small number of people with intellectual disabilities called

294  Research handbook on disability policy for a similar opportunity in New Zealand. This was achieved through a funded, narrative research project that ultimately became known as Mean As! (Luskie et al., 2019; Milner, Mirfin-Veitch, Tikao, & Frawley, 2019). Taking a bicultural approach to this work gave the storytellers choice and control over the research methods, with both kaupapa Māori research approaches that “assume the existence and validity of Māori knowledge, language and culture” (Tuhiwai-Smith, 2015, p. 48), and inclusive research methodologies used to co-produce the collection of New Zealand stories that underpin the Mean As! project. This library of stories is publicly available and has underpinned reporting and advocacy for a reformed approach to violence and abuse prevention, and a reframing of sexuality and relationship research and advocacy with people with intellectual disabilities in New Zealand. To date, combining our New Zealand and Australian narrative research on sexuality and intellectual disability, we have co-created almost 40 stories. We share parts of these stories in this chapter to highlight the importance of the voices of people with intellectual disabilities being heard in research that can inform policy that determines how supports and services understand, support and engage with the most personal aspect of their lives: sexuality and relationships.

CAROL’S STORY (AUSTRALIA) I lived with my sister for 5 or 6 years but I never told her. I was scared, terrified she would kick me out. I kept myself hidden. I knew at school but I never said. It was too scary. Might get beaten up or something. Get teased. Even harder with a disability. I am a lesbian. I knew from about 15, 16. I thought I’m going to be having a family and all that. Me and her, settle down early and have a family, that’s what I wanted and I felt it in my heart and head. I knew from about 15, 16. I had crushes on other girls, I didn’t act on it because I knew I might lose them as a friend. No relationships with men, because I knew. I don’t feel it – it’s not right for me. But I thought, “This is not normal. I can’t feel like that. I have to turn off the feelings” for a long time, and what if I got caught? I didn’t even know a single person that was gay, not in real life. So I didn’t know if it was real or not. Maybe it was wrong to be gay. I was scared. I thought they would say “Oh, you can’t be lesbian. You have to be straight. You have to be not telling anybody. You have to keep it to yourself. You can’t go out.” I worried that a lot of things would happen and stop my freedom. (Frawley & O’Shea, 2017, p. 10)

This story is used in the SL&RR programme to stimulate discussion about sexual rights, about ‘coming out’ and the barriers and issues faced in coming out. Peer educators and co-facilitators work with participants to reflect on the stories and to learn about, reach out to, and use local services and supports. An evaluation of the LGBTQIA+-focused programme found that participants valued being able to co-design the programme to include issues they were interested in, which resulted in a focused session on safe sex practices facilitated by an LGBTQIA+ health service. In addition, participants reported feeling the programme was a safe place for them to reflect through the programme stories, share their own stories and talk about issues like bullying, prejudice and lack of privacy in group and family homes. One participant noted, on reflection about these experiences, “We are just like them [the people in the story]. We’re the same people in different packages” (Marks, O’Shea, McVilly, Frawley, & Despott, 2020, p. 360). Others raised their feelings of isolation from their peers with disabilities and, for those who identified as LGBTQIA+, from their LGBTQIA+ peers and communities.

Sexuality and relationships  295 In a policy context, this story and others in the LGBTQIA+ group of stories in SL&RR have been used by the researchers, peer educators in the SL&RR programme and collaborators through this research and in subsequent research to activate and help shape what is now a growing policy, research and activist body of work on the sexuality rights of LGBTQIA+ Australians with disabilities (O’Shea, Latham, McNair, Despott, Rose et al., 2020; O’Shea & Despott, 2018). Hearing the voices of LGBTQIA+ people with intellectual disabilities like Carol reinforces the need for services and funding bodies to acknowledge and understand the enablers and barriers experienced by LGBTQIA+ people with intellectual disabilities in accessing and using their sexuality rights. This includes their right to diverse sexualities and identities, their rights when accessing sexual health services and broader health services, and the importance of their engagement in sexual identity activism and advocacy.

WE DON’T JUMP FENCES ANYMORE. WE WALK THROUGH OUR FRONT GATE (NEW ZEALAND) In the New Zealand Mean As! project, storytellers told stories that illustrated experiences of “extraordinary sexuality” in their own ways. Jess and David, for example, talked of extreme surveillance and a lack of privacy impacting their relationship. J:

They couldn’t stop us all the time. Sometimes I’d run away. I would often storm off. You know, because I was getting bullied at the house. I used to sneak off other times too. When staff went down to the wash-house I would sneak outside and book the mobility van so they didn’t know where I was.

D: And then she would ring me and and say is it all right for me to come in? We spoke to my staff and they decided yep ok, we’ll give it a chance. J:

The taxi drivers knew more about what we were doing. That’s why we get respected as a well-known couple.

D: We would meet secretly at the club too. I started going to be with Jess until one of Jess’s staff popped in and put in a complaint and I was stopped from going. In the end I was allowed to go, but Jess always had to bring a staff person…. J:

The first time we had been intimate was when I fell asleep on David.

D: I was around at Jess’s and she was upset. You know, pissed off at what was happening and so I picked her up and put her on my knee and she just relaxed and ended up going off to sleep. J:

He was talking to me and then I didn’t respond. Basically David has soft skin. He’s got very, very, soft skin. I don’t know why I fell asleep on him. It was just the touch. The touch of his hand on my stomach and stuff.

D: So here I was, sitting there talking to her and the next thing I looked and her eyes were closed and I thought Oh fuck! Anyway, Jess’s staff knock and I give Jess a wee tickle on her hip. Woke her up. Put her back in her wheelchair. Did her up because I didn’t want to get caught with them walking in and seeing Jess on my knee. (Laughs).

296  Research handbook on disability policy J:

Yeah we had to be very secret. Very, very, very secret. They didn’t acknowledge the way we were. We couldn’t talk about it. They would have stopped it alright! I didn’t trust anyone. Especially the service. We couldn’t really have sex. So we just cuddled and stuff like that. We weren’t too sure about it at the start were we. But it all turned around and became ok. (Luskie et al., 2019, pp. 45–47)

Jess and David also shared the understanding that their intention to formalize their partnership through marriage was viewed by other people as ‘abnormal’ because they both had intellectual disabilities. D: People were shocked when we got engaged weren’t they Jess? J:

My father was quite shocked. My step-mum was quite shocked. My brother was quite shocked. My little brother was quite excited.

D: People were actually quite nasty. In the end we got engaged to shut everybody up. J:

At the time we didn’t know anyone with a learning disability who was married. I don’t really know why people with a learning disability don’t marry.

D: Well I think anybody with a disability can be married to who they want, when they want. Other people shouldn’t have that control. We really didn’t think it was so unusual. To us it was just a normal thing to do. J:

Well you might not have been thinking about it too much, but I had! I asked David three times. I asked him: “Do you think I am the one? Do you reckon I’m the one for you?” (Luskie et al., 2019, pp. 45‒50.)

The co-researchers with intellectual disabilities worked with the Mean As! stories to identify and develop ‘key messages’ that accompany the story. The key messages are intended to be used to inform policy and practices by disability support services and others that engage with the stories to support the sexuality rights of people with intellectual disabilities. They shared the following insights that they thought could frame a more rights-based approach to sexuality and relationships for people with intellectual disabilities: ● Whether you have a disability or not – you have the right to an intimate relationship. You shouldn’t have to have a relationship just to prove to other people you can do it. We are no different to anybody else – except that we have to work so much harder to be together. ● It is not right that people who work in a service can tell you who you can see and who you can’t. It’s our choice. Unless the person has asked you to be an advocate staff have no right to step in. ● People with a learning disability are often told they are not allowed to have sex in their service. It’s a policy. Couples who are caught doing it can get in big trouble. ● When you are not allowed to have sex in your service there is no proper place. You have to do it in places like the park. ● It is like Big Brother is always watching you. ● Partner relationships are open and they are equal and you care about each other equally. We think that relationships with a partner are what makes the biggest difference in people’s

Sexuality and relationships  297 lives. They are really important and should be respected and valued by those whose role it is to support us. ● People who live in disability support services are not often supported to build relationships by doing things non-disabled adults do to become intimate, like going out to a restaurant or planning a date. ● Sex feels like the needle in the hay stack. A precious and hard thing to find surrounded by the “hay” of everyday living. People with a learning disability who spend a lot of time in disability support services are steered towards non-sexual lives by the “hay” of being taken to places and kept busy doing things where meeting someone and becoming intimate are not easily possible. ● When people with a learning disability talk to staff it often feels like there is a right (approved of) answer. We feel the lack of opportunities to talk openly and honestly harms people with a learning disability because we are more likely to be met by more issues and opinions (discrimination) than people who do not have the label of intellectual disability. (Luskie et al., 2019, pp. 51–52)

I WISH WE WERE CURRENT (NEW ZEALAND) Another Mean As! story saw the storyteller grappling with his growing awareness of his sexual orientation, and his concerns about how others would view it; perhaps due to an implicit knowledge that ‘diverse’ sexualities are not yet automatically assumed for people with intellectual disabilities. When I was 16 I still didn’t understand about my sexual orientation, well I didn’t have a word for it, I didn’t even know about gay. I didn’t know the word existed. You don’t know about your sexuality or sexual orientation if you can’t meet people. But one day, this person Ethan, we were on the trampoline, we weren’t talking much, and out of the blue he just said “I’m gay”. I didn’t give a second thought to it, I just said “I’m gay too”. It’s like something inside of me just forced me to say it. I could have done stuff, but I was afraid because of the way that Ethan’s carers were watching him like a hawk, all the time. I want people to know that if you are with a service provider, they shouldn’t be controlling of your life and they shouldn’t tell you that you can’t be gay. Families can also stop you being yourself too, if you have ID. Growing up I had to fight to try to enjoy being with girls. With boys, I had to fight the denial that I liked them. But now I know I’m attracted to guys. But I don’t like to stick to labels because people’s sexuality can change over time. I don’t know if there is such a thing as soul mates, if there is I haven’t found mine. (Luskie et al., 2019, p. 61)

Like Carol earlier in this chapter, the storyteller of ‘I wish we were current’ recounts his internal struggles to understand and accept his sexuality; struggles that have undoubtedly been shared by many other young people but have not always been voiced by people with intellectual disabilities. Key messages developed by the co-researchers with intellectual disabilities from this story to inform self-advocacy, and rights-based policy and practice include: ● We think the worst thing about this story is that the Storyteller never felt free to be who he really was. He was a gay man and couldn’t be himself until he had the chance to speak up. ● [The Storyteller] couldn’t come out of his own shell. It is important that people with a learning disability feel like they can come out of their own shell.

298  Research handbook on disability policy ● We felt the Storyteller didn’t feel he could talk about his sexuality. One of the ways you know whether you are respected is that you feel free to talk up and ask questions when you need to. ● We noticed he said he didn’t trust anyone. He also said he wished his staff person wasn’t in the room. That he might have opened up more to the counsellor if he wasn’t there – which made us think he was frightened to talk to his staff. ● We weren’t surprised that he said that he said figuring out who he was, was like solving a puzzle because he didn’t have anyone to help him. Everyone should feel free to talk up when you need to. ● The Storyteller had to wait for another boy with a learning disability to ask him if it was ok to be gay. ● We also believe that disability services and others need to think about the questions people with a learning disability might have over their whole life time. ● We thought the Storyteller needed help when he was younger that was different from the support he needed to figure out what was happening when he was older and starting to have sex. There is more than one puzzle to put together. (Luskie et al., 2019, p. 62) The next steps for the project are to promote these resources, in partnership with the self-advocate peer educators and the broader self-advocacy community, to the disability services sector, rights and advocacy organizations and the sexual health, education and counselling sector. The work of the Mean As! research including the story of how the research was undertaken and the resources that have been co-developed through the research is seen by the research group as one way of challenging dominant assumptions that continue to subvert real understanding and consideration of the sexuality rights of people with intellectual disabilities. Advocacy for Sexuality Rights through Peer Education In the Australian context, the various peer education approaches we developed extend the voices of people with disabilities in ways that challenge the idea about who is the expert in this area. It ensures that people with disabilities are talking to, supporting and learning with people with disabilities. Our research about the peer education model has confirmed that peer educators and participants in programmes find this approach more accessible, learn from each other and feel far more in control of what and how they are learning. One peer educator noted: Seeing how everyone was wanting to learn, and wanting to understand more about their rights … I’d say that these are my proudest moments as a Peer Educator, seeing that I’m helping people change, and seeing people feeling more safer, as their rights are recognised more. (Frawley & O’Shea, 2020, p. 424)

In the New Zealand Mean As! project sexuality rights were advocated for in a different way. Peer engagement occurred through the people with intellectual disabilities being co-researchers within this inclusive research. The co-researchers were the first people to engage with the stories contributed by their peers with intellectual disabilities, via a process of listening and discussion. Their considered analysis shared above through some of the key messages from the stories provided a unique insight into what they saw emerging from the individual narratives, and were intentionally inserted at the end of each of the accessible versions of the stories.

Sexuality and relationships  299 This final message was articulately expressed by one of the co-researchers during the analysis process of the story ‘I am current’. Disability services never seem to look for diversity. They don’t look with rainbow glasses! No one talks about being gay or lesbian or other sexual identities. Staying silent closes doors. The Storyteller had to wait for another boy with a learning disability to ask him if it was ok to be gay! (Donald Beasley Institute, n.d.)

The co-researchers in the Mean As! Project exemplified the importance of an intellectual disability lived experience lens being applied to sexuality and relationship research. Due to their own lived experience of intellectual disability, sexuality, and disability supports and related services, issues for policy and practice relating to sexuality rights with the greatest relevance to their lives and the lives of their peers were quickly and clearly identified. These are outlined in the key messages that accompany the stories in the online library, and importantly that are also used to frame the two reports published from the research that are now informing ongoing policy and practice advocacy by the researchers (Luskie et al., 2019; Milner, Mirfin-Veitch, Tikao, & Frawley, 2019).

DISCUSSION As a group of people with disabilities who are faced with an almost universal presumption of incapacity and incompetence, forging a pathway to sexuality rights has been fraught with challenges for people with intellectual disabilities. As a consequence, the right to be and to be accepted as sexual citizens is long overdue and our brief foray into the current policy landscape of Australia and New Zealand makes it relatively easy to see why. Both countries lack strong, positive, rights-based policy in the area of sexuality with sexuality rights remaining on the fringes, only fleetingly referred to and most often in the context of sexual health and reproductive services, or sexual abuse prevention. While these related rights are undeniably important, the foundational and fundamental right to sexuality has stayed in the shadows. So how can we shift this impasse and achieve policy that recognizes the sexuality rights of people with intellectual disabilities in a way that unequivocably secures their status as sexual citizens? In our view, one significant answer to this question lies in research by and with people with intellectual disabilities, like that which is presented in this chapter. We have sought to illustrate that legitimate claims for equal sexual citizenship can be heard when preconceived or assumptive ideas about the sexuality and relationships of people with intellectual disabilities are ‘(con)tested’ by real stories, and told in ways that are meaningful to the people telling them. Contributors to our work repeatedly tell stories that align with Gill’s (2015) analysis – that is, they typically experience “extraordinary” relational experiences governed by others and characterized by an absence of privacy, and little consideration of intersectionality. However their collective contributions also hold the power to negate the myths and misconceptions that led Gill to identify what he terms as the “extraordinary sexuality” of people with intellectual disablities. By listening to people with lived experience of contested sexuality we have been able to hear two critical messages. The first is that people with intellectual disablities want to be free to pursue relationships according to their own values and beliefs and that reflect the diversity and intersectionality of their lives. The second is that they are deeply aware of the socially

300  Research handbook on disability policy contructed barriers that prevent them from doing so. Ginn (2021) recently identifed that researchers working to challenge the sexual injustice encountered by people with intellectual disablites have noted the critical need to involve people with lived experience in research and its outputs. Ginn went on to say: Research uplifting their voices, priorities and concerns are particularly appropriate for developing recommendations for changes to policy and practice. This provides a platform to identify points of failure in enabling sexual self-determination as well as the forms of services people desire to support their sexual and relational well-being. (2021, p. 2)

Or in other words, when you do engage with stories about relationships and sexuality told by people with intellectual disabilities themselves, you are much more likely to understand the impact of policy, or its absence on their lives. Both of these examples have repeatedly been evident in the stories told by the people who have informed our research. We also suggest they can inform and open up the opportunity to frame policy like that advocated for by Touching Base in Australia. This policy would reflect a rights approach to sexuality and relationships that explicitly refers to and acknowledges the diversity of the experiences, wants, needs and aspirations of people with disabilities who rely on services and supports, and that advocates to ensure these rights become reality. Such policy would take the need for individual negotiation as referred to by Bahner (2021) out of the equation and instead provide the foundation for all people with disabilities who engage with supports and services to live their lives having the expression of their sexuality and their intimate relationships recognized as ‘necessary’ in their lives.

CONCLUSION As shown in the small number of story excerpts about relationships and sexuality able to be presented here, people with intellectual disabilities are clearly and legitimately claiming their right to sexual citizenship. The narratives go beyond individual people solely expressing a desire to ‘be sexual’. Reflecting true sexual citizenship, they include discussions about sexuality identity, sexuality and relationship politics and advocacy, for example LGBTQIA+, marriage equality, the right to have choice and control, and be free from surveillance in the context of intimate relationships. Drawing on this work to inform and underpin broader rights-based and intersectionally framed social policy could, and should, enable their sexuality rights to finally be progressed alongside others in society.

NOTES 1. 2.

Start of endnote. Hereafter referred to as New Zealand. End of endnote. Start of endnote. General Comments in relation to the CRPD are developed to assist with the interpretation of the rights provisions in the CRPD by signatory States. End of endnote.

Sexuality and relationships  301

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302  Research handbook on disability policy -sought-court-order-to-prevent-disabled-son-travelling-overseas-to-meet-56-year-old-man/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ H64I6MO3TAMDXXO2EPG3UG7QT4/.​ Office for Disability Issues (2021) The National Strategy and Action Plan to Eliminate Family Violence and Sexual Violence. https://www.odi.govt.nz/whats-happening/the-national-strategy-and-action ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -plan-to-eliminate-family-violence-and-sexual-violence/ ​ ​ ​ ​ ​ ​ ​ ​ Office for Disability Issues (2019) Disability Action Plan 2019‒2023. https://www.odi.govt.nz/disability -action-plan-2/ ​ ​ ​ Office of Disability Issues (2016). New Zealand disability strategy 2016‒2026. https://www.odi.govt.nz/ ​ ​ ​ ​ ​ assets/New-Zealand-Disability-Strategy-files/pdf-nz-disability-strategy-2016.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ O’Shea, A., & Despott, N. (2018). LGBTIQ people with intellectual disability. Intellectual Disability Australasia, 39(3), 46–48. Retrieved from https://search.informit.org/doi/10.3316/informit ​ ​ ​ ​ ​ ​ ​ ​ .974348090603596 O’Shea, A., & Frawley, P. (2021). “That’s my story”: Transforming sexuality education by, for and with people with intellectual disabilities. In R. Shuttleworth & L. R. Mona (Eds.), The Routledge Handbook of Disability and Sexuality (pp. 391–402). Abingdon: Routledge. O’Shea, A., Frawley, P., Leahy, J., & Nguyen, D. (2020). A critical appraisal of sexuality and relationships programs for people with Acquired Brain Injury. Sexuality and Disability, 38(1), 57–83. O’Shea, A., Latham, J. R., McNair, R., Despott, N., Rose, M., Mountford, R., & Frawley, P. (2020). Experiences of LGBTIQA+ people with disability in healthcare and community services: Towards embracing multiple identities. International Journal of Environmental Research and Public Health, 17(21), 8080. Schaaf, M. (2011). Negotiating sexuality in the Convention on the Rights of Persons with Disabilities. SUR – International Journal on Human Rights, 8(14), 113–132. Stace, H. & Sullivan, M. (2020). A Brief History of Disability in Aotearoa New Zealand. Office for Disability Issues, www.odi.govt.nz/guidance-and-resources/a-brief-history-of-disability-in-aotearoa ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -new-zealand/ ​ ​ Traustadottir, R., & Johnson, K. (2000). Women with Intellectual Disabilities: Finding a Place in the World. London: Jessica Kingsley Publishing. Tuhiwai-Smith, L. (2015). Kaupapa Māori research: Some kaupapa Māori principles. Research Commons. United Nations (2006). Convention on the Rights of Persons with Disabilities. https://www.un.org/ ​ ​ ​ ​ development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -the-rights-of-persons-with-disabilities-2.html ​ ​ ​ ​ ​ ​ ​

25. Narrative 8: A quiet genocide: the power of segregation Cindy Liu

Content warning: this piece discusses ableism, violence against disabled people, gender violence and eugenics. If this is triggering to you, please do not read it. Abled people, please sit with your discomfort. People with disabilities continue to be segregated and marginalised, where the belief that we are ‘alien’, that we are ‘other’ is upheld by many cultures across history and into current practice. Unfortunately, people with disabilities can’t escape these perceptions. Non-disabled people wield all the social, political and financial power and supports we need, so they get to decide our reality. This fuels the continued infantilisation of people with disabilities, which has stripped us of our rights to our mind, body and sexuality. The common belief that people with disabilities are too innocent and therefore automatically asexual is false and damaging. Suggesting that having romantic and sexual desires and having a disability must be mutually exclusive is wrong and dangerous and yet so commonplace in our societies. Our right to pleasure and procreation is dictated by non-disabled people’s desire to protect their moral sensibilities and worldviews. This can be seen in varying forms, from demonising and criminalising sex therapy, assumed asexuality, imposed abstinence, forced sterilisation and non-consensual abortions. All of which are deemed inhuman under any other circumstances. We have a right to our bodies, sexuality and reproductive health, and yet are stripped of those rights to maintain the status quo. Where pleasure is a privilege, one that people with disabilities don’t deserve or are entitled to. However, what we desire in life is no different to any other human. Society should be a place where people are well informed and supported in their decisions. This is sadly not the case for people with disabilities, where young people with disabilities are being given zero, inadequate or inaccessible sex education, rendering us ill-equipped and disenfranchised. We are forced into vulnerability, with a higher risk of experiencing sexual violence, but not given the understanding and vocabulary we need to make others aware of the abuse. The systems intended to support us are ridiculously complex. Our supports are then untimely and inadequate, which is dangerous and disempowering. These systems have no understanding of our lived experience, and more often than not, the supports we do get access to are instruments of segregation. We are currently second-class citizens; an afterthought. A world dominated by the question ‘how can we adapt the non-disabled world for people with disability?’ What results is dangerous. From small things like ramps hidden behind buildings, away from non-disabled eyes. To segregated specialist schools, away from non-disabled children. Enslaved disabled workers, under decidedly separate moral sensibilities. 303

304  Research handbook on disability policy This narrow-minded thinking creates an economy of ‘community tourists’. People with disability are shepherded through society as visitors, never guaranteed the full enjoyment of our human rights. We are segregated from society, denied pleasure, procreation and autonomy, and told to ‘be happy with what you have’. This is a quiet genocide. In response, we have started to carve out our own place in society. One that is our supportive community, which is empowering and values our being and inherent dignity.

26. Engaged advocacy: a framework for inclusion of people from refugee and asylum-seeking backgrounds in disability policy1 Maree Higgins, Mahmoud Murad, Kim Robinson, Angela Dew, Katherine Boydell, Fiona McKay, Joanne Watson, Mariano Coello, Louisa Smith, Kelley Johnson and Ruth Wells

The body of literature that highlights the invisibility of people with disability from refugee and asylum-seeking backgrounds2 – and their absence in public planning and policy spheres – is growing (Burns, 2017; Busuttil, 2021; Miles, 2013; Smith-Khan, Crock, Ben Saul, & McCallum, 2015; Women’s Refugee Commission, 2008). In a 2008 report, the United Nations High Commissioner for Refugees (UNHCR), Antonio Guterres, reflects: “Too often invisible, too often forgotten and too often overlooked, refugees with disabilities are among the most isolated, socially excluded and marginalized of all displaced populations … [people] with disabilities are more limited by our actions than by their own physical and mental abilities” (Women’s Refugee Commission, 2008, p. 1). Some eight years later, Smith-Khan et al. (2015, p. 39) reiterated Guterres’ description of refugees with disability as “the forgotten refugees”. In the same vein, Burns (2017) observes that refugees with disability are frequently rendered invisible, othered and pathologized. Pisani and Grech (2015, p. 421) lament, “migration theory grows without the disabled person, disability studies without the migrant, and practice without the disabled migrant”, showing a lack of attention to intersectionality when considering the experiences of people with disability. Co-author and colleague Mahmoud Murad describes how advocacy skills are learnt over time and require support and a ‘mind-shift’ for people from refugee and asylum-seeking backgrounds: I have spent a long time in Australia learning how to ask and search for services. I support others in my community to do this. I have observed that many people from refugee backgrounds are focused on getting basic needs and do not have any expectation that they will receive this kind of support, so they do not ask for it. (Murad, excerpt from Wells et al., 2020, p. 387)

People with disability from refugee and asylum-seeking backgrounds have experiences and insights that fundamentally influence and shape their lives in resettlement. Research shows that bio-psycho-social, geopolitical, cultural and spiritual factors intersect to create specific vulnerabilities for people with disability from refugee and asylum-seeking backgrounds (David, Maylea, Nipperess, & Hirsch, 2019; Duell-Piening, 2018; King, Edwards, Correa-Velezc, Haird, & Fordyce, 2016). Thus, lived experience needs to be given greater weight in policy development, service provision and planning. It is simply inadequate to 305

306  Research handbook on disability policy provide services if Murad, quoted above, and others in similar situations do not know how or where to access them. Australia is an important case study for examining the impact of resettlement policies on people with disability from refugee and asylum-seeking backgrounds. As a settler-colonial society with national wealth and resources, Australia is a major resettlement country for people from refugee backgrounds (Refugee Council of Australia, 2021a). Australia has a history of successful permanent resettlement of people from refugee backgrounds, and a strong network of dedicated torture and trauma recovery services (FASSTT, 2021). The country plays a leading role in the International Rehabilitation Council for Torture Victims (2021), informing international norms regarding psychosocial rehabilitation for refugees in resettlement. Unfortunately, Australia is also a world leader in legislating and enforcing restrictive, punitive immigration policies for people from asylum-seeking backgrounds who arrive by boat (Australian Human Rights Commission, 2019). These policies have harmful impacts on people from asylum-seeking backgrounds (Steel et al., 2006) but are emulated internationally by governments seeking to curb migration (Brown, 2016). It is therefore important to understand the implications of Australian policy for people with disability from refugee and asylum-seeking backgrounds as these influence policy frameworks globally. Drawing on case studies from our research with Syrian and Iraqi refugee communities in Australia, we present three formulations of advocacy that illuminate the challenges experienced and the agency claimed by people with disability from refugee and asylum-seeking backgrounds. We explore how lived experience can enrich and inform policymakers, practitioners and researchers, and outline five policy recommendations to transform service provision at the nexus of refugee and disability rights.

OBLIGATIONS UNDER THE UNITED NATIONS REFUGEE CONVENTION International human rights conventions have profound impacts on how refugee status and disability are understood and responded to within societies. In non-signatory states, their impact may be limited by restrictions on civil society. Co-author Murad highlights these tensions regarding human rights conventions in Syria: When I explored the concepts of freedom and justice, I had difficulty getting information because of the Syrian government’s narrowing of public freedoms and human rights. Despite my reading in these philosophical fields, I could not understand the idea of equality until I had the opportunity to speak openly with others once I left Syria. I did not link the concepts of rights with equality until reading the UN Declaration of Human Rights. Inside Syria, there was no opportunity for civil society, and if I spoke about concepts of freedom, I would endanger my life. (Murad, chapter co-author)

Human rights conventions are none-the-less important, as they provide frameworks for addressing human rights violations. Below we discuss the influence of these conventions in the Australian context. Australia was a founding member of the United Nations and influential in drafting the Universal Declaration of Human Rights (Australian Human Rights Commission, 2023). The 1951 Refugee Convention, which Australia ratified in 1954, and its 1967 Protocol, detail the

Engaged advocacy  307 rights of people who face serious threats to their life or freedoms, and the legal obligations of States to protect them (UNHCR, 2021a). The UNHCR defines a refugee as a person fleeing conflict or persecution; and an asylum seeker as a person seeking international protection and whose request has yet to be processed (UNHCR, 2021b). There is great diversity amongst humanitarian entrants to Australia regarding countries of origin, reasons for leaving, socio-economic status, cultural backgrounds, religious beliefs, healthcare needs and disability status. Since the end of World War II, Australia has admitted for permanent settlement over 800,000 refugees and people in humanitarian need from many countries (Phillips, 2017). Under current arrangements, the Australian Government sets an annual number of humanitarian visas: 17,100 places in 2019–2020; 11,521 visas were granted before the programme was suspended in March 2020 because of COVID-related travel restrictions (Department of Home Affairs, 2020a). Around 62 per cent of these visas were granted to people from the Middle East, 22 per cent from Africa and 16 per cent from Asia (ibid., p. 1). Like many other countries, Australia has a stratified system of visas. Humanitarian visas are granted to people who demonstrate that they meet the Refugee Convention or that they are otherwise in need of protection prior to arriving in Australia. These visa holders are generally granted permanent settlement. However, people who arrive in Australia without a valid visa and apply for asylum are generally granted temporary protection visas of three or five years duration, with limited scope to obtain permanent settlement (Department of Home Affairs, 2021b).3 These visas also differ based on the circumstances of arrival. For decades, people from asylum-seeking backgrounds have been forced to reside indefinitely in immigration detention centres, despite international condemnation (Nethery & Holman, 2016). In 2019–2020, more than 23,000 permanent protection visa applications were lodged by people who had arrived in Australia with a valid visa (Department of Home Affairs, 2020c). Only 1,650 protection visas were granted in that period, and more than 37,000 people were awaiting a decision on their applications as of June 2020 (ibid.). As of January 2021, around 31,000 people had entered Australia without authority, a number which includes babies born to families during their stay in Australia (Department of Home Affairs, 2021a).

OBLIGATIONS UNDER THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (CRPD) Article 1 of the CRPD defines disability as “… long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder full and effective participation in society on an equal basis with others” (United Nations, 2011). The CRPD highlights the relevance of environmental barriers and social contexts to the experience of disability, drawing attention to people at risk due to war and humanitarian emergencies (Duell-Piening, 2018). Australia is required to adopt a holistic definition of disability in line with the World Health Organization’s (WHO) (2001) International Classification of Functioning, Disability, and Health’s “bio-psycho-social” definition, which states that disability or illness involves the interaction of biological, psychological and social factors. Disability is represented as complex, dynamic, multi-dimensional and contested (WHO, 2001). The WHO presses for recognition of the experience of disability as a universal human experience: all humans can experience “a decrement in health and thereby experience some disability”

308  Research handbook on disability policy and thus responses should be “mainstreamed” (WHO, 2001, p. 3). Yet, institutions across the globe appear to be “both slow in development and inconsistent in application”, particularly in responding to people from refugee and asylum-seeking backgrounds who experience disability (Mirza, 2011b, p. 1532). Globally, there are an estimated 10 million people with disability who are displaced (Crock, Smith-Khan, McCallum, & Saul, 2017). Many authors emphasize challenges ascertaining accurate figures about the incidence of disability in forcibly displaced populations including limitations in data collection methods, differing understandings of disability and significant resource constraints (Burns, 2017; Smith-Khan et al., 2015). This likely contributes to the invisibility of these populations in both transit and resettlement. Despite, or perhaps because of this, the UNHCR emphasizes: Persons with disabilities are not a homogenous group, they face multiple and compounding forms of discrimination including on the basis of disability and other intersecting diversity factors that may lead to situations of exclusion. (2019, p. 4)

Australian Bureau of Statistics (2011) data suggests approximately one in five Australians have a disability, with almost 6 per cent having a severe or profound level of disability. Unfortunately, the needs of people with disability from diverse ethnic, religious, cultural and linguistic backgrounds are not sufficiently conceptualized, quantified or reported on in Australia, increasing vulnerability, disadvantage and social exclusion (Crock et al., 2017). Indeed, the inclusion of people with disability from refugee and asylum-seeking backgrounds into Australia was long resisted. Historically, Australia used a person’s disability to exclude them from the humanitarian resettlement programme (Soldatic, Somers, Buckley, & Fleay, 2015). These marginalizing and exclusionary practices are also reflected in international arrangements (Berghs, 2015). Following the Australian Government’s 2008 ratification of the CRPD (United Nations, 2011), public policy shifted towards increased resettlement of people from refugee backgrounds with disability (Duell-Piening, 2018). Importantly, the Australian Government streamlined the health waiver for humanitarian visa applicants in 2012 such that health and community care costs were no longer assessed (Department of Home Affairs, 2020b). This allows people with disability to seek asylum via temporary protection and safe haven visas and to be granted offshore humanitarian refugee visas (Department of Home Affairs, 2020b; Heenan et al., 2019) and creates clearer pathways to resettlement for people with disability from refugee and asylum-seeking backgrounds (Department of Home Affairs, 2020b). The introduction of the health waiver was significant, as torture and trauma experienced by people claiming asylum may have a direct impact on physical and mental health, often resulting in disability (Kaplan, 2020). The previous assessment of cost to receiving communities contravened the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OHCHR, 1996). However, despite these changes, many people from refugee backgrounds experience challenges once resettled related to the availability and suitability of disability provisions (Duell-Piening, 2018; Hirsch, Maylea, David, & Nipperess, 2019; King et al., 2016). Guided by the WHO and international conventions including the CRPD and the Refugee Convention, settlement, health and disability services must work to enhance belonging and inclusion for displaced persons and forced migrants (Mirza & Heinemann, 2012). Increased

Engaged advocacy  309 participation, meaningful engagement in social and cultural activities, and improved employment opportunities all require strengthening for people with disability from refugee and asylum-seeking backgrounds.

A HIDDEN POPULATION A recent report on refugee belonging in Australia notes, “successful settlement and integration is a goal shared by refugees, the communities where refugees settle and government at all levels” (Culos, Rajwani, McMahon, & Robertson, 2020, p. 6). Yet, a key issue affecting services and advocacy is a lack of data on disability needs of humanitarian entrants: Australia does not collect national statistics, and nor do most other jurisdictions. If a rights-based approach is to be taken as recommended by the United Nations (2019), then this practice – or absence of practice – must be critically examined. Soldatic et al. (2015, p. 508) note how people with disability from refugee and asylum-seeking backgrounds face “cumulative disadvantage” regarding social participation. As a participant in our Australian research whom we have given the pseudonym Simoni identifies, people from refugee backgrounds tend to focus on immediate, essential needs like housing, health and psychosocial support (Smith et al., in press): I’m just too busy meeting the needs of my family and my house, I don’t have time to engage in community activities. Since arriving [in] Australia, I have not stayed home, not even for a day. Each day I have appointments for my sons, or for my daughters, or for myself... I don’t have time to play and have fun … I have many responsibilities. (Simoni, excerpt from Smith et al., in press)

The situatedness of people with disability from refugee and asylum-seeking backgrounds at the nexus of human and disability rights discourses (Crock et al., 2017) raises policy and practice-based challenges that remain poorly addressed. US-based research suggests service providers’ efforts often do not meaningfully converge across sectors (Mirza & Heinemann, 2012). Very similar problems are noted by the Refugee Council of Australia (RCOA) (2019) regarding gaps in service provision including for: on-arrival disability assessment, support, essential equipment and aides; appropriate housing; adequate support from the National Disability Insurance Scheme (NDIS); culturally appropriate disability services; and translating and interpreting services. These shortfalls represent a “significant failing of Australia’s responsibility under both the Refugee Convention and the CRPD, as well as the Australian Government’s commitment to access and equity” (ibid., p. 11). Another report about the resettlement of people with disability from Syria and Iraq revealed the urgent need for better consultation and feedback mechanisms in the sector and system-wide improvements in the provision of information, diagnosis, financial and housing assistance and tailored care (Furneaux & Korkees, 2019). Many governments fail to provide access to disability services for people who do not meet residency requirements, and Australia is no exception. Australia funds privately run immigration detention centres that contain people who are seeking protection but arrive without a valid visa (Freyer & McKay, 2021). Some consider immigration detention centres an important component of national border security; however, this policy is condemned as discriminatory and there is ample evidence that it inflicts human rights abuses and violations on people to whom Australia has obligations under relevant Conventions and Protocols (Refugee Council

310  Research handbook on disability policy of Australia, 2021b; United Nations, 2019). As Freyer and McKay (2021) demonstrate, people detained in Australian immigration detention centres experience deprivation, degradation and the utmost powerlessness. People are detained indefinitely and endure years of uncertainty. Lack of control over protection decisions has an enormous impact on people who have already experienced persecution in their country of origin – these conditions severely impact mental health. Many people from refugee and asylum-seeking backgrounds who are detained stop eating and find caring for themselves and their families increasingly difficult (Freyer & McKay, 2021). Successive Australian governments have been criticized by the United Nations in the strongest terms for these policies (UN Special Rapporteur, 2018). Essex (2019) states that Australia’s policy of indefinitely detaining people for seeking asylum, and imposition of living conditions observable in these centres, is cruel and inhumane. Journalists are prevented from entering immigration detention centres and staff are prevented from publicly revealing what occurs in the course of their work (Nethery & Holman, 2016). This prevents Australians from comprehending the awful reality of the immigration detention regime. Immigration detention arrangements do not satisfy the equal protection obligations under CRPD Article 5, or provide consistency, transparency or administrative fairness for visa applicants with or without disability (Australian Civil Society CRPD Shadow Report Working Group, 2019, p. 30). It is well documented that diagnoses of psychosocial disability are directly attributable to harsh conditions in immigration detention centres, including protracted periods of closed detention, sexual and other forms of violence, overcrowding, inadequate healthcare, and fear for the future (Disabled People’s Organisations Australia, 2017; Freyer & McKay, 2021). In comparison, resettlement strategies that enhance social cohesion and highlight the contributions of people from refugee and asylum-seeking backgrounds deliver social and economic benefits for nations (Culos et al., 2020). National policy reform can and should focus on inclusive, practical, service-oriented responses. Regarding the resettlement of people with disability from refugee and asylum-seeking backgrounds, co-authors’ previous work (Dew et al., 2020; Wells et al., 2020) indicates that resettlement organizations and disability services may be reluctant to work together, due to: (a) perceptions that disability services are poorly equipped to cater for diversity and lack understanding of the lasting effects of refugee experiences (e.g., surviving genocide or civil war); and (b) perceptions that disability services impose liberal western notions of disability rights that may be unfamiliar to people from refugee and asylum-seeking backgrounds. Structural responses to these problems are clearly needed, and people with disability from refugee and asylum-seeking backgrounds must be included in service planning and development. However, Burns (2017), Busuttil (2021), Miles (2013) and others argue that people with disability from refugee and asylum-seeking backgrounds are regrettably absent in public planning and policy spheres. In its report, the Refugee Council of Australia (2019) observes that very little is known about (a) the impact of disability on the resettlement experiences of people from refugee and asylum-seeking backgrounds and (b) the resources of local communities to facilitate successful settlement.

LIVED EXPERIENCE CAN DRIVE POLICY INNOVATION We believe that the lived experience of people with disability from refugee and asylum-seeking backgrounds can be a powerful driver of policy and practice innovation. Greater recognition

Engaged advocacy  311 of people’s capability to influence policy and drive social change is sorely needed. One of the few researchers who has emphasized the agency of people with disability from refugee and asylum-seeking backgrounds to create real change is Manza Mirza (2014). Mirza’s work illuminates collaboration between forced migrants with disability and their allies at a grassroots level to “mobilize resources and pursue disability rights” (Mirza, 2014, p. 429). Of many excellent examples Mirza provides, one involves the Karen Handicapped Welfare Association, a disabled persons’ organization in Mae La refugee camp, Thailand. This group established a residential care facility offering “emotional support, rehabilitation care, and vocational training for landmine survivors in the camp who lack family support” (Women’s Refugee Commission 2008 Report, cited in Mirza, 2014, p. 429). Another initiative involved collaboration amongst ethnically diverse people with disability in Dzaleka camp in Malawi, who engaged with humanitarian workers to increase access to camp resources and develop respite care and community awareness programmes (Mirza, 2011a). Mirza observes, “these examples are testament to a proliferating disability consciousness in situations of forced displacement and a reminder that displaced persons with disabilities are not passive aid recipients, but rather people with skills, ideas, and a growing awareness of their rights” (Mirza, 2014, p. 429). Article 21 of the CRPD outlines the obligation of states: States Parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice. (United Nations, 2011)

However, the Refugee Convention and Protocol are, to the best of our knowledge, silent on the right to express views or to have one’s views included and given due weight. In the light of these limitations, we present three examples from our research with people with disability from refugee and asylum-seeking backgrounds, reflecting on opportunities and challenges to drawing upon lived experience in service design, provision and evaluation.

EXAMPLE ONE This example is based on lived-experience data from a preliminary study by Dew et al. (2020) involving family members of people with disability from Syria and Iraq whose refugee journeys led to Sydney, Australia. Noor’s4 account, below, highlights her hard-won expertise regarding disability needs and issues following resettlement to Australia: I am an Iraqi woman in my 30s and a single mother. My children, two boys under the age of ten, have intellectual disabilities. I was widowed by the war [in Iraq], and have always fought hard for my children’s wellbeing. In Iraq, this was particularly difficult. Government supports for people living with disability were almost non-existent. Our family received small payments that did not cover the scope of our needs, and my sons were both made to leave their school when they could not keep up with their classmates. My caring responsibilities took all my time; I felt unsupported and alone. I was forced to leave Iraq due to war. I was very fearful for my children’s safety due to their disabilities. (Noor)

Noor recounts how things changed once she was resettled:

312  Research handbook on disability policy When we arrived in Australia, we felt safe. We received resettlement support from a family support group run by a Refugee Support Service. We were allocated a small apartment and National Disability Insurance Scheme (NDIS) packages for both children. But then new challenges emerged. My sons’ support workers were employed casually and kept changing. They did not seem to have training in disability support. I spent lots of time training them. Also, my sons had not been connected to the full range of services they required. I asked if I could object or request another package and was told, “no, this is your package, and you should abide by it”. Over time, I learnt the skills and knowledge I needed to navigate these issues. I talked to others, especially other parents at my children’s school, to understand the support we were entitled to. They told me about the NDIS and disability services in my area. I attended a community event, where I met a worker who said that it’s within my right to change workers if needed. I learnt that I could succeed when I requested new NDIS plans for my sons. I can now request more changes if the ones they have are inadequate. (Noor)

While Noor has many opportunities to exercise her freedom of expression and opinion, and attempts to do so with service providers, her views are not initially listened to or appropriately acted upon, causing distress and dissatisfaction. She is not enabled to “seek, receive and impart information and ideas on an equal basis with others”, as anticipated in the CRPD (United Nations, 2011, Article 21). Noor’s power to advocate for her children and her confidence to claim her rights improves over time, particularly through learning from other parents and speaking with alternative service providers. Noor’s experience reveals how people from refugee and asylum-seeking backgrounds can emerge as advocates. This is the first of the lessons we can take from this series of examples: that the ability of families from refugee and asylum-seeking backgrounds to advocate within the disability services sector on behalf of themselves or their children evolves over time. It is not static, nor is it necessarily well-developed prior to arrival. It requires tenacity, an understanding of what is available and a willingness to speak up, push back and seek more information where needed. This emerging advocacy can also be blocked or discouraged by service providers, a concern when inadequate data hides the true numbers and needs of people with disability from refugee and asylum-seeking backgrounds.

EXAMPLE TWO This example draws upon Mahmoud Murad’s companion narrative in this handbook. It also highlights hard-won expertise regarding disability needs and issues. Murad arrived in Australia in 2014 and has devoted all his energy to accomplishing his “dreams and goals … to get more education, to be more political, to bring more justice to people who live in Syria”, as stated in his companion narrative. Murad describes times in his life when he felt “vulnerable, and terrified, and on the brink of death” because of his beliefs and circumstances as a person with disability. These experiences have prompted his disability activism since resettlement. As he states: I am affected by a condition known as Charcot-Marie-Tooth. I fled Lebanon and Syria after experiencing torture and kidnapping for my beliefs and ideals… I started volunteering work when I came to Australia to support my community, a refugee community. I saw many different weak points for the community and searched for information in English and translated it through Google Translate, and put it on the website that I designed. First, I started through a Facebook group, in 2015. And in 2016, the Lebanese Muslim Association invited me to a hackathon called Questathon. After Questathon, they awarded me money to start a website.

Engaged advocacy  313 Murad goes on to explain: One of the big things I have focused on is the NDIS, because this is one of the biggest organisations that gives service to people’s disability. They give information, but they don’t have enough information for people from refugee and asylum-seeking backgrounds. They don’t have enough media; they don’t have enough awareness-raising videos!

Murad outlines a form of advocacy that he hopes will contribute to the future wellbeing of his community: In the future I would like to create an alliance between Syrian families, because it’s very important for people with disability to have alliances, or to have a small society to help them see their rights and fight for these rights, and to explain their needs or rights. (Murad, excerpt from lived-experience account)

Murad’s account positions him as an active and engaged participant in the transformation of services and the broader socio-political landscape. Murad does not wait for his views to be listened to and acted upon but proactively seeks out audiences and opportunities to influence his community and wider society. Using digital technologies, Murad compiles material for his community, first investing energy into becoming informed about available services and then translating this information for his community and disseminating it via Facebook and later a purpose-built website. In his lived-experience narrative, Murad says, “A lot of people see my blog. It provides useful information. Between 2017 and 2020, nearly 88,000 people have visited my site.” The second of the lessons we can take from this series of examples is that people from refugee and asylum-seeking backgrounds who advocate for improvements in the disability services sector are an untapped resource, and their knowledge is vital to draw upon to centre the principles of quality, person-centredness, safety and responsiveness in disability policy.

EXAMPLE THREE This example concerns people with disability in immigration detention. Disability and chronic health conditions are very poorly managed within Australian immigration detention centres. A submission by the RCOA to the Royal Commission into Violence, Neglect and Exploitation of People with Disability highlights the complex barriers and vulnerabilities people who are detained in these centres face, particularly people with psychosocial disability (2021b). The indefinite detention of people likely to be found eligible for refugee protection is especially cruel and inhumane, as Mr A’s story, drawn from a case study in the RCOA submission (2021b, pp. 11–12), shows: Mr A was 16 years old when he arrived in Australia by sea with his mother. They were detained in an immigration detention centre upon arrival. It was reported that Mr A had psychosocial disability from a young age. Because of his age and disability, the government decided that Mr A should not live in a detention facility but in the community while the protection application was being considered. However, while still in the detention centre, Mr A was charged with assaulting a public officer and

314  Research handbook on disability policy damaging some property. He was sent to a juvenile detention centre but then put back in immigration detention with his mother. When he went to court, the judge cautioned him, but did not charge him. Mr A was “reportedly involved in a number of subsequent incidents in detention” (p. 11). Staff advocated for the family to be transferred to a facility in a larger city to get appropriate support for Mr A, but nothing changed, and Mr A remained where he was. Mr A had been in detention for four years when found to be owed protection by Australia as a refugee. His mother was released into the community and granted a five-year Safe Haven Enterprise Visa. But Mr A remained in immigration detention, while the minister, who has discretionary power to refuse visas, considered whether Mr A should be released from immigration detention. (From the case study of Mr A, Refugee Council of Australia, 2021b, pp. 11–12)

Case review notes state that Mr A “demonstrates little self-agency and requires active support to engage necessary processes and services” (Refugee Council of Australia, 2021b, p. 11). Service providers interacting with Mr A state that their inability to ensure Mr A has access to support for his condition “presents a clear risk to the detainee [sic] and prevention of status resolution” (ibid., p. 11). The Australian Commonwealth Ombudsman, who assessed Mr A’s case several times, expresses that “the ongoing detention of this young man is inappropriate for his mental health needs” (ibid., p. 12). Despite these multiple expressions of concern, Mr A spent 2,560 days (more than 7 years) in immigration detention (Refugee Council of Australia, 2021b, p. 12). As explained earlier in this chapter, cruel and inhumane treatment of people applying for asylum is prevalent within immigration detention centres. Conditions exacerbate and potentially instigate disability and chronic health conditions. The experience of being confined in immigration detention centres is devasting and underlines a tragedy at the very centre of policymaking in the sector. This is the third of the lessons we can take from this series of examples: that systems of degradation strain the advocacy skills of people from refugee and asylum-seeking backgrounds and rob them of their ability to influence social change. The use of the first person in these case studies, where possible, is to enable the reader to fully apprehend the power of lived experience as embodied and transformative. Lessons from these lived-experience portrayals include (1) a threefold conceptualization of advocacy as emerging, engaged and strained; and (2) clarity that lived experience is a rich resource for policymakers and practitioners who provide services to people with disability from refugee and asylum-seeking backgrounds. We now explain how this threefold conceptualization of advocacy can inform sector-wide policy and practice innovation.

OUR THREEFOLD CONCEPTUALIZATION OF ADVOCACY Emerging Advocacy In Example One we highlight how the skills of advocacy often emerge through necessity. In Australia, Noor’s ability as an advocate evolves; she fights for her family’s rights within existing systems, envisioning solutions even while being told “no”, strengthened by her experiences of finding solutions in the absence of appropriate systems of support. Deep commitment to children, spouses and parents, both in Australia and overseas, drives the emerging advocacy of people from refugee and asylum-seeking backgrounds, interacting with systems of support in Australia and elsewhere.

Engaged advocacy  315 Noor’s example also underlines the significant time investment and inordinate tenacity required on the part of Emerging Advocates from refugee and asylum-seeking backgrounds. Accounts like Noor’s illustrate the numerous challenges families face prior to resettlement. Crock et al. (2017, p. 6) discuss the importance of a capabilities approach to disability assessment and planning for refugees, acutely aware of “the range of obstacles and challenges that operate to prevent or impede an individual’s participation”. Obtaining adequate care requires locally relevant and highly developed skills and knowledge – of one’s rights, and of systems and services. For women such as Noor to emerge as advocates for themselves and their families, a “shared language” that promotes collaboration and inclusion is needed (Miles, 2013, p. 807). This is necessary in part because, although lived-experience accounts can add considerable weight and depth to service sector reports, the challenges highlighted earlier in this chapter indicate that disability policy does not draw on such accounts, despite Australia and other nations undertaking that: In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States’ Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations. (United Nations, 2011, Article 4.3)

Engaged Advocacy In Example Two we highlight how the skills of advocacy can be deployed independently of formal systems of support. In Murad’s companion narrative, he explains his work to date, and his goal to create alliances between people with disability from refugee and asylum-seeking backgrounds – community-owned spaces of influence that are inclusive, reflexive and focused on grassroots change. Murad’s account also highlights the significant time investment, tenacity and resources required for engaged advocacy and draws attention to the expertise and rich potential of Murad and others to drive improvements in disability policy. Engaged Advocates are working on their own or with others to build or change systems, highlighting that the systems do not suit their needs or the needs of others, or do not exist at all. In Murad’s example we see a person with disability from a refugee background initiating opportunities to express their views; using a range of tools and resources to address service gaps and needs that are perceived uniquely and in an embodied way; unsettling the status quo and directing their efforts towards uplifting other people; and independently identifying multiple ways of contributing expertise and acting upon systems. The active and engaged sense of self-in-society fundamentally challenges the western tendency to underestimate and render invisible the skills, experiences and very existence of people with disability from refugee and asylum-seeking backgrounds. Strained Advocacy In Example Three we note how, despite sustained and often highly engaged advocacy, people from refugee and asylum-seeking backgrounds can experience overwhelming powerlessness and inability to influence their circumstances or secure safety or adequate services for their families. Contrary to the CRPD framework, the immigration detention environment is

316  Research handbook on disability policy revealed as neither safe nor inclusive of people with disability: people in these environments cannot exercise the right to freedom of expression and opinion, or seek, receive and impart information and ideas on an equal basis with others and through the forms of communication of their choice. The emphasis on risk management in immigration detention centres disrupts, and may even prevent, access to appropriate medication, reasonable adjustments and treatments for people with disability. This enables and institutionalizes human rights abuses. As we have shown in this chapter, lived experience is a rich resource for policymakers and service providers at the nexus of refugee and disability policy, and should be drawn on much more explicitly in line with the CRPD and related documents. This has important implications for policymakers and practitioners globally, as will now be discussed.

IMPLICATIONS OF OUR ANALYSIS Our threefold conceptualization of advocacy illuminates that people with disability from refugee and asylum-seeking backgrounds are capable agents of change. Engaged Advocates from refugee and asylum-seeking backgrounds should be making important contributions to disability policy. However, people require resources and training and the support of robust governance structures to make meaningful policy and practice contributions. Co-design is ultimately required, defined here as generative processes in which people with disability from refugee and asylum-seeking backgrounds are agents of change at all stages of service design and improvement. Significant advances in co-design have strengthened engagement with lived experience in recent years (see for example, Jackson, Fong, Jones, & Orr, 2021; UK Research and Innovation, n.d.). In Australia, our collaborators include organizations at the nexus of forced migration and disability such as Foundation House and the Victorian Refugee Health Network. These organizations are leading the way by establishing Community Advisory Groups to enhance practitioner capacity and better understand service issues from the perspectives of people with disability from refugee backgrounds resettled to Australia (Furneaux & Korkees, 2019). Local and international initiatives we describe in this chapter demonstrate the value of Engaged Advocates who are people with disability from refugee and asylum-seeking backgrounds, and emphasize that (1) remuneration must be provided for this work and (2) Engaged Advocates require a genuine seat at the table, as exemplified in the disability policy recommendations we provide below. In addition, policymakers, service providers and government bodies should embed Engaged Advocates at all levels of disability organizations, so that lived experience can inform and influence organizational culture and structures as well as daily organizational functioning. These are valuable steps towards shifting the invisibility of people from refugee and asylum-seeking backgrounds and implementing an intersectional analysis in disability policy. Flourish Australia, a nationally funded disability service provider, is an exemplar in this regard: the organization has embedded peer workers with lived experience of mental illness at all levels of the organization, including senior management (Jackson et al., 2021).

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DISABILITY POLICY RECOMMENDATIONS Mindful of global obligations regarding the inclusion and empowerment of people with disability from refugee and asylum-seeking backgrounds, and based on the evidence and analysis provided in this chapter, we recommend that governments and services providers collaborate with emerging, engaged and/or strained advocates in resettlement by: 1. Implementing formalized, paid co-design processes that provide opportunities for meaningful dialogue, and draw upon and enhance the agency of people with disability from refugee and asylum-seeking backgrounds. 2. Establishing systems to record disability support needs respectfully and affirmatively, focusing on specific requirements of people with disability from refugee and asylum-seeking backgrounds, to develop robust data sets that support service planning, implementation and improvement. 3. Promoting safe, timely, appropriate and responsive service provision through better integration of knowledge and coordination of resources at the nexus of health, disability and refugee resettlement, including in immigration detention facilities. 4. Producing and disseminating information tailored to community understandings of disability, published in community languages, and that address community assumptions and fears. 5. Establishing and attending to grievance procedures with enforcement provisions for upholding disability rights of people from refugee and asylum-seeking backgrounds. Engaged advocacy – the precious ability to self-represent and exercise agency in decisions and processes that affect people directly – challenges the prevailing tendency to underestimate the skills of people with disability from refugee and asylum-seeking backgrounds. Advocacy at the nexus of forced migration and disability is a skill that emerges and evolves over time and can be nurtured by service providers and policymakers but can also be blocked and deflected. Systems of degradation and abuse must not continue to strain the advocacy skills of people from refugee and asylum-seeking backgrounds or rob them of their ability to influence social change.

CONCLUSION Ongoing attention to the lived experience of people from refugee and asylum-seeking backgrounds is needed to realize their human rights as anticipated by the CRPD. Whether the focus is on the intimate space of one’s home and regards the everyday challenges people with disability face, enhancing engaged advocacy by building community alliances to strengthen individuals’ and families’ understanding and capability to realize their rights, or improving the alignment of the CRPD, CRC and the Refugee Convention at the highest level, we are at a turning point in service provision. In this chapter, we provide a framework that moves beyond tokenism to encourage the meaningful inclusion of lived experience in policymaking and service design processes.

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NOTES 1. 2.

3. 4.

Start of endnote. The authors gratefully acknowledge Caroline Lenette for her helpful comments on the draft chapter. End of endnote. Start of endnote. We use the term people from refugee and asylum-seeking backgrounds because we prefer person-first language, that is, language that “demonstrates respect for people with disabilities by referring to them first as individuals, and then referring to their disability when it is needed” (Blaska, 1993, p. 27). See earlier in this chapter for definitions of the terms refugee and asylum seeker. End of endnote. Start of endnote. It is possible for people on Safe Haven Enterprise Visas to apply for a permanent migration visa under certain circumstances (Australian Government Department of Home Affairs, 2023). End of endnote. Start of endnote. A pseudonym has been used and some details have been modified to ensure ‘Noor’ is not identifiable. End of endnote.

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320  Research handbook on disability policy King, J., Edwards, N., Correa-Velezc, I., Haird, S., & Fordyce, M. (2016). Disadvantage and disability: Experiences of people from refugee backgrounds with disability living in Australia. Disability and the Global South, 3(1), 843–864. Miles, S. (2013). Education in times of conflict and the invisibility of disability: A focus on Iraq? Disability & Society, 28(6), 798–811. doi:10.1080/09687599.2013.802220 Mirza, M. (2011a). Disability and cross-border mobility: Comparing resettlement experiences of Cambodian and Somali refugees with disabilities. Disability and Society, 26(5), 521–535. doi:10.108 0/09687599.2011.589188 Mirza, M. (2011b). Disability and humanitarianism in refugee camps: The case for a travelling supranational disability praxis. Third World Quarterly, 32(8), 1527–1536. doi:10.1080/01436597.2011.6 04524 Mirza, M. (2014). Disability and forced migration. In E. Fiddian-Qasmiyeh, G. Loescher, K. Long, & N. Sigona (Eds.), The Oxford handbook of refugee and forced migration studies (pp. 420–432). New York: Oxford University Press. Mirza, M., & Heinemann, A. W. (2012). Service needs and service gaps among refugees with disabilities resettled in the United States. Disability and Rehabilitation, 34(7), 542–552. doi:10.3109/09638288. 2011.611211 Nethery, A., & Holman, R. (2016). Secrecy and human rights abuse in Australia’s offshore immigration detention centres. The International Journal of Human Rights, 20(7), 1018–1038. doi:10.1080/1364 2987.2016.1196903 OHCHR. (1996). Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment. Geneva: United Nations. Retrieved from https://www.ohchr.org/en/professionalinterest/ ​ ​ ​ ​ ​ ​ ​ ​ pages/cat.aspx ​ ​ Phillips, J. (2017). Australia’s humanitarian program: A quick guide to the statistics since 1947. Retrieved from https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ pubs/rp/rp1617/Quick_Guides/HumanitarianProg ​ ​ ​ ​ ​ Pisani, M., & Grech, S. (2015). Disability and forced migration: Critical intersectionalities. Disability and the Global South, 2(1), 421–441. Refugee Council of Australia. (2019). Barriers and exclusions: The support needs of refugees with a disability. Retrieved from https://www.refugeecouncil.org.au/disability-report/2/ ​ ​ ​ ​ ​ ​ ​ ​ Refugee Council of Australia. (2021a). Global resettlement statistics. Retrieved from https://www .refugeecouncil.org.au/global-resettlement-statistics/6/ ​ ​ ​ ​ ​ ​ ​ Refugee Council of Australia. (2021b). People with disability in immigration detention: Submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. 32. Retrieved from https://www.refugeecouncil.org.au/wp-content/uploads/2021/11/People-with ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -disability-in-detention-RCOA.pdf ​ ​ ​ ​ Smith, L., Chesher, I., Dew, A., Higgins, M., Lenette, C., Wells, R., & Boydell, K. (in press). Key characteristics of the refugee journey for Iraqi and Syrian family members who support their children or siblings with disability. Disability & Society. doi:10.1080/09687599.2022.2045189 Smith-Khan, L., Crock, M., Ben Saul, B., & McCallum, R. (2015). To “promote, protect and ensure”: Overcoming obstacles to identifying disability in forced migration. Journal of Refugee Studies, 28(1), 38–68. doi:10.1093/jrs/feu020 Soldatic, K., Somers, K., Buckley, A., & Fleay, C. (2015). “Nowhere to be found”: Disabled refugees and asylum seekers within the Australian resettlement landscape. Disability and the Global South, 2(1), 501–522. Steel, Z., Silove, D., Brooks, R., Momartin, S., Alzuhairi, B., & Susljik, I. (2006). Impact of immigration detention and temporary protection on the mental health of refugees. The British Journal of Psychiatry, 188(1), 58–64. doi:10.1192/bjp.bp.104.007864 UK Research and Innovation. (n.d.). Connected communities. Retrieved from https://ahrc.ukri.org/ ​ ​ ​ ​ documents/publications/connected-communities-brochure/ ​ ​ ​ ​ ​ UN Special Rapporteur. (2018). Report of the Special Rapporteur on the situation of human rights defenders on his mission to Australia. UNHCR. (2019). Working with persons with disabilities in forced displacement: Need to know guidance. Retrieved from https://www.unhcr.org/4ec3c81c9.pdf ​ ​ ​ ​ ​

Engaged advocacy  321 UNHCR. (2021a). The 1951 Refugee Convention. Retrieved from https://www.unhcr.org/en-au/1951 ​ ​ ​ ​ ​ ​ ​ -refugee-convention.html ​ ​ UNHCR. (2021b). Who we help. Retrieved from https://www.unhcr.org/en-au/who-we-help.html ​ ​ ​ ​ ​ ​ ​ ​ ​ United Nations. (2011). Convention on the Rights of Persons with Disabilities. New York, 13 December 2006. In Treaty series (Vol. 2515, pp. 3–192). New York: United Nations. United Nations. (2019). UN CRPD Review of Australia. Factsheet: Discrimination against migrants and refugees with disability. Retrieved from https://dpoa.org.au/wp-content/uploads/2019/08/Factsheet ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _Migration.docx ​ Wells, R., Murad, M., Higgins, M., Smith, L., Lenette, C., Lappin, J., … Zwi, K. (2020). Exploring the intersection of human rights, health, disability and refugee status: An arts-based approach. Australian Journal of Human Rights, 26(3), 387–404. doi:10.1080/1323238X.2021.1882044 Women’s Refugee Commission. (2008). Disabilities among refugees and conflict-affected populations. Retrieved from https://cms.emergency.unhcr.org/documents/11982/43580/Disability+among+ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ refugees+and+conflict-affected+populations/2700f6f2-1e65-4ea5-9e86-cb86aada7462 ​ ​ ​ ​ ​ ​ ​ ​ ​ World Health Organization. (2001). International classification of functioning, disability, and health. Retrieved from https://www.who.int/standards/classifications/international-classification-of ​ ​ ​ ​ ​ ​ ​ ​ ​ -functioning-disability-and-health ​ ​ ​

27. Narrative 9: My work advocating for the Syrian community Mahmoud Murad, assisted by Miream Salameh and Maree Higgins, translated by Miream Salameh

INTRODUCTION My name is Mahmoud Murad and I am a scholar/activist from a refugee background with a disability. I am sharing my story of learning about human rights, navigating my disability support needs in different contexts, and advocating for others with disability to explain how I draw on my personal story and work and community experiences to achieve justice, equality and dignity for my community, the Syrian community. This chapter has an English version and an Arabic version of the same text to raise awareness about disability in my community. ‫ أشارك قصتي في التعلم عن حقوق‬.‫اسمي محمود مراد وأنا باحث و ناشط من خلفية الجئة ومن ذوي االحتياجات الخاصة‬ ‫ ومناصرة اآلخرين من ذوي الحتياجات الخاصة عن طريق‬،‫ وتصفح احتياجاتي لدعم اإلعاقة في سياقات مختلفة‬،‫اإلنسان‬ ،‫شرح كيفية استخالصي من قصتي الشخصية وخبراتي العملية والمجتمعية لتحقيق العدالة والمساواة والكرامة لمجتمعي‬ ‫الجالية السورية‬. . ‫يحتوي هذا الفصل على نسخة إنجليزية ونسخة عربية لنفس النص لزيادة الوعي حول االحتياجات الخاصة او االعاقة‬ ‫في مجتمعي‬.

LIFE IN SYRIA I was born in Libya. My family were there for two years then we moved back to Syria for my father’s work. I don’t have a lot of memories from my first five years, but there are certain things that I still remember because of the physical problem I had. I wasn’t able to carry anything or even to walk. I received treatment that stabilised my condition, enabled me to start moving and I learnt to walk. At 20 years old, I still didn’t know what kind of disability I had. During compulsory military service, medical examinations for exemption from military service revealed the nature of my illness – my disability is at risk of deterioration (progressive impairment). When the doctor told my dad about the diagnosis, my dad had a stroke, as the treatment was very expensive and unaffordable, especially the physical sessions and the safe walking support. My family had to bribe military doctors in order to be discharged from the army. I obtained qualifications in Agricultural Engineering in my home city of Homs. I worked in a printing shop while I studied, and became involved in trade union work, defending workers’ rights. I was especially concerned about the rights of workers with disabilities, and involved

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Narrative 9: My work advocating for the Syrian community  323 in the struggle for improving working conditions and the inclusion of people living with disability in the workforce. At the outbreak of the Syrian revolution in 2011, I became involved as a citizen journalist by launching a small newspaper in cooperation with my friends to educate citizens in the fields of civil and political human rights. When the revolution began I was feeling enthusiastic but also fearful of what could happen. I joined the protests, but my physical disability limited me. I was especially aware that I could not run if there was gunfire. I kept thinking about where I might hide or find shelter if I needed it. Many were massacred in those protests. There were times when I felt vulnerable and terrified and on the brink of death. My experiences changed the way I think and plan for the future.

COMING TO AUSTRALIA The United Nations determined me to be a refugee under the War Crimes Protection Legislation in 2014 and I came to Australia later that year. I was in my mid-twenties when I arrived in Australia. The main information used to decide whether my family and I were refugees was our experiences of persecution and violence in Syria and Lebanon. But I was also asked about my disease and referred to doctors to get medical certificates and reports about my needs. During that time I was offered assistive technology to help me walk; this was the first time I was ever offered any assistance to move safely. The United Nations prepared a report about my family and me which was reviewed by the Australian government to decide whether we could be accepted by Australia under their resettlement program. As soon as we arrived in Sydney, my family and I were loaded on to a bus and taken to Wollongong where we lived for two years. During that time, I studied English. We were quite isolated for the first six months but gradually we began to make friends. We were happy when we began to meet others from the small Syrian community located in Wollongong. We also met people from the Syrian community who travelled down from Sydney to visit us.

ADJUSTING TO LIFE IN AUSTRALIA Many people in the Syrian community have difficulty adjusting to life in Australia. In my case, it was especially hard to find out what supports for my disability were available. While in Wollongong I tried to discuss my disease with my General Practitioner. He referred me to the hospital for physiotherapy, which was helpful, but I only received ten sessions. Unfortunately I was not informed about disability supports in those early years – I did not find out about the about the National Disability Insurance Scheme (NDIS) or other services that might assist me until 2017. The way I found out about the NDIS was that I went to an information session. I heard about the information session through the Migrant Resource Centre. They helped me to find out more information so that in 2018 I registered as a participant in the NDIS. I know this scheme is quite new, but when this system started, a lot of other systems just stopped. And the new system was not well prepared. A lot of people have been impacted by that. The NDIS

324  Research handbook on disability policy providers, the NDIS system, is still building an understanding of the needs of the people they service. This has made the sector harder for me and my community to access. Also, culture impacts how people in the Syrian community, particularly families, see services, for example, services for people with disability. In the Syrian community they are a collective society – this is very important. NDIS is designed to focus on the individual, not the collective. But when you’re going to see a Syrian family, you need to remember that they see things as one family. Sometimes there may be shame. Sometimes, people may need more explanation about the service model. Especially the idea of a person with a disability being independent. Here, we can put two circles: disability and gender. For example, women with disability may have more trouble accessing some services without their family, because they view independent women as bringing shame on themselves and the family. The family or community may feel that a woman’s independence is against their culture. This is why they need more information sessions, and more knowledge about how services in Australia work. Workers need to see the family and understand their context before providing services to a Syrian or Iraqi family. They need to take into account religion, ethnicity, age, gender and different ways of thinking.

DOING ADVOCACY As I said before, I have been focused on disability rights for many years. Because there is no financial support for people with disability in Syria, I have always thought it would help if employers were able to see people with disability in society not just as a disability, but as a whole person. They might need fewer hours a week, more manageable work hours. Workers in Syria do not have protection – they work very long hours, 12 hours per day, 70 hours per week. This is very hard for any person, but even harder for people with disability. It feels like the labour market is not designed for people who have difficulties. It’s very important to understand the needs of all people, not just a few people. Although Australia is different, there are more supports for people with disability, I wish there could be more inclusive policies and adjustments for people with disability so that they could work and use their skills in a job they love. Because of my focus on human rights, I started volunteer work as soon as I arrived in Australia. I wanted to support my family and my community, a refugee community. I saw many different weak points for the community and searched for information in English and translated it through Google Translate, and put it on the website that I designed. First, I started through a Facebook group in 2015, and in 2016 the Lebanese Muslim Association invited me to a hackathon they started called Questathon. After this, they awarded me money to start a website and gave our team an award. With this money we started a website about settlement services to help people from refugee backgrounds improve their lives. This was the first part of the idea: to provide information on topics including immigration, how people can bring their family to Australia, and how they can settle in Australia. First, I just translated information about Centrelink payments and settlement services. After six months, I started on a new part focusing on how people can participate in the labour market. I searched for different courses to find out how my community can improve their language skills through studying. If they can’t go to university directly, they need time, and they can start from a Certificate III and IV diploma, and this can help improve

Narrative 9: My work advocating for the Syrian community  325 their language. After that, I read the guide and the NDIS website, and I translated the content for the community. In 2019, I studied web development, to improve my website skills, to make my blog stronger. The blog is named refugeehub.com.au. It is in Arabic. I have focused on the NDIS, because this is one of the biggest organisations funding services to people with disability. They give information, but they don’t have enough information for people from refugee backgrounds. They don’t have enough media, they don’t have enough awareness-raising videos, they don’t translate quickly enough in community languages. It doesn’t seem like they think this is very important. A broader focus I have is for people to learn how they can develop an achievement or life plan. I learnt these skills myself through research, going to forums, reading the internet, talking to service providers and trying so hard to find options for my own situation. First, I set up a poll on Facebook for the Syrian community. And when they sent me their ideas, what they needed, I searched for information, took the content and translated it into Arabic, and put up the resources. A lot of people see my blog. It provides useful information. Between 2017 and 2020, nearly 88,000 people have visited my site. I try to have real information and direct it through the website, and this can help my community to understand what is going on. In 2019, a university invited me to engage in a research project opportunity. At first, I was very afraid to undertake this project. I liked the idea of the project but I was afraid because my English was not so strong. But my colleague, my teammate at the Community Migrant Resource Centre, prepared me to go to the interview, and she helped me prepare my résumé. My team supported me a lot to get this opportunity. We always spoke a lot about disability, what we can do to improve the rights of people with disability, and they told me, ‘This is your place, go find it, go and get it!’ When I came to the interview, I was mainly thinking, ‘My English is a little bit weak, I can’t speak’, but they asked me a lot about human rights, and this is my area, and I enjoyed speaking on that topic. The interviewer liked what I said. I spoke about my activity and political involvement, and about economic rights, my knowledge as a person living with disability who has worked hard to gain exployment – I focused on this area a lot, it is very important to me.

THE FUTURE In the future I would like to create an alliance between Syrian families, because it’s very important for people with disability to have alliances, or to have a small society to help them see their rights and fight for these rights, and to explain their needs or rights. An alliance would help them to know that Australia is a democratic country. It could help people to understand services and improve services for people with disabilities. In Syria, you can’t discuss things as openly as here. Because we have lived under a dictatorship for 40 years, we are more closed, a closed society, we are afraid because of the government. Everyone is afraid of the government, because associations are illegal, and alliances are illegal. People are very nervous when you speak with them about creating an alliance or association – they try to withdraw. They might say, ‘OK, you can do that but I can’t be involved.’ And you can see that everyone fights each other, because they are under pressure.

‫‪326  Research handbook on disability policy‬‬ ‫‪The struggles of people in my community make me think that we need to have an alliance‬‬ ‫’‪for people, to help them advocate, to help them to share their stories: ‘OK, this what we saw.‬‬ ‫‪Many people I know have two or three years of experience with the NDIS, and they understand‬‬ ‫‪how their lives might improve. But they do not have a voice. This is important. To focus or to‬‬ ‫‪design something like an alliance, I have begun to bring people together to negotiate with each‬‬ ‫‪other, become more comfortable gathering and discussing their issues, and after that, to use‬‬ ‫‪our voices to improve the sector.‬‬ ‫‪I still want to achieve all the changes that I dreamed about earlier in my life. I would like to‬‬ ‫‪develop a program to support people with disability from Syria. I would also like to have my‬‬ ‫‪own YouTube channel to discuss issues in a different way for the community. I would like to‬‬ ‫‪make change on many levels: social, economic and political.‬‬ ‫عملي في مناصرة الجالية السورية‬ ‫المؤلفون‪ :‬محمود مراد بمساعدة ماري هايغنز‬ ‫المقدمة‬ ‫اسمي محمود مراد وأنا باحث ‪ /‬ناشط من خلفية الجئة من ذوي االحتياجات الخاصة‪ .‬أشارك قصتي في التعلم عن حقوق‬ ‫اإلنسان‪ ،‬وتصفّح احتياجاتي لدعم اإلعاقة في سياقات مختلفة‪ ،‬وأُناصر (أدعم) اآلخرين من ذوي اإلعاقة عن طريق شرح‬ ‫كيفية استخالصي من قصتي الشخصية وخبراتي العملية والمجتمعية لتحقيق العدالة والمساواة والكرامة لمجتمعي "الجالية‬ ‫‪".‬السورية‬ ‫يحتوي هذا الفصل على نسخة إنجليزية ونسخة عربية للّنص ذاته لزيادة الوعي حول االحتياجات الخاصة أو اإلعاقة في‬ ‫‪.‬مجتمعي‬ ‫الحياة في سوريا‬ ‫ُولدت في ليبيا‪ ،‬عاشت عائلتي هناك لمدة عامين ثم عدنا إلى سوريا من أجل عمل والدي‪ .‬ليس لدي الكثير من الذكريات‬ ‫من سنواتي الخمس األولى‪ ،‬ولكن هناك بعض األشياء التي ما زلتُ أتذكرها بسبب المشكلة الجسدية التي لدي‪ .‬لم أكن قادرا ً‬ ‫على حمل أي شيء أو حتى المشي‪ .‬تلقيتُ عالجا ً يثبت حالتي ومكنني من بدء التنقل وتعلمت المشي‪ .‬في العشرين من‬ ‫عمري‪ ،‬ما زلت ال أعلم أي نوع من اإلعاقة لدي‪ .‬خالل االستعداد للخدمة العسكرية اإللزامية‪ ،‬كشفت الفحوص الطبية من‬ ‫أجل اإلعفاء من الخدمة عن طبيعة مرضي _ حيث ّ‬ ‫معرضة للتدهور ( اعتالل مترقي) ‪ .‬عندما أخبر الطبيب‬ ‫أن إعاقتي ّ‬ ‫تعرض والدي لسكتة دماغية‪ ،‬حيث كان العالج ُمكلفا ً جداً‪ ،‬وال يمكن تح ّمله وال سيّما الجلسات‬ ‫والدي عن التشخيص‪ّ ،‬‬ ‫‪).‬الفيزيائية وأداة دعم المشي اآلمن‪ .‬حيث اضطرت عائلتي إلى رشوة األطباء العسكريين ( من أجل التسريح من الجيش‬ ‫حصلت على مؤهالت في الهندسة الزراعية في مدينتي حمص‪ ،‬وعملتُ في مطبعة أثناء دراستي‪ ،‬وشاركت في العمل‬ ‫النقابي مدافعا ً عن حقوق العمال‪ .‬كنتُ قلقا ً بشكل خاص بشأن حقوق العمال ذوي االحتياجات الخاصة‪ ،‬واهتممت بالنضال‬ ‫‪.‬من أجل تحسين ظروف العمل وإشراك األشخاص ذوي االحتياجات الخاصة في القوى العاملة‬ ‫عند اندالع الثورة السورية عام ‪ ،2011‬انخرطت فيها كصحفي مدني من خالل إطالق صحيفة صغيرة بالتعاون مع‬ ‫أصدقائي لتثقيف المواطنين في مجاالت حقوق اإلنسان المدنية والسياسية‪ .‬عندما بدأت الثورة كنت أشعر بالحماس ولكنني‬ ‫كنت خائفا ً أيضا ً مما يمكن أن يحدث‪ .‬انضممت إلى االحتجاجات‪ ،‬لكن إعاقتى الجسدية حدت من أفعالي أو حركتي‪ ،‬كنت‬ ‫أدرك بشكل خاص أنّني ال أستطيع الركض إذا كان هناك إطالق نار‪ .‬ظللت أفكر أين يمكن أن أختبئ أو أجد مأوى إذا‬ ‫كنت بحاجة لذلك‪ .‬تم قتل العديد في تلك االحتجاجات‪ ،‬كانت هناك أوقات شعرت فيها بالضعف والرعب و أنّي على وشك‬ ‫‪.‬الموت‪ ،‬غيّرت خبراتي الطريقة التي أفكر وأخطط بها للمستقبل‬ ‫القدوم إلى أستراليا‬

‫‪Narrative 9: My work advocating for the Syrian community  327‬‬ ‫قررت األمم المتحدة أن أكون الجئا ً بموجب قانون الحماية من جرائم الحرب في عام ‪ ،2014‬وقد أتيت إلى أستراليا في‬ ‫ّ‬ ‫وقت الحق من ذلك العام‪ .‬كنت في منتصف العشرينات من عمري عندما وصلت إلى أستراليا‪ .‬كانت المعلومات الرئيسية‬ ‫سئلت‬ ‫المستخدمة لتقرير ما إذا كنت أنا وعائلتي الجئين هي تجربتنا مع االضطهاد والعنف في سوريا ولبنان‪ .‬ولكن ُ‬ ‫أيضا ً عن مرضي وتمت إحالتي إلى األطباء للحصول على شهادات طبية وتقارير حول احتياجاتي‪ .‬خالل ذلك الوقت‪ ،‬تم‬ ‫تقديم أجهزة تكنولوجية مساعدة لي من أجل مساعدتي على المشي اآلمن ‪ ،‬كانت هذه هي المرة األولى التي أتلقى فيها أي‬ ‫‪.‬مساعدة للتنقل بأمان‬ ‫أعدت األمم المتحدة تقريرا ً عني وعن عائلتي تمت مراجعته من قبل الحكومة األسترالية التخاذ قرار فيما إذا كان يمكن‬ ‫‪.‬قبولنا من قبل أستراليا في إطار برنامج إعادة التوطين الخاص بهم‬ ‫بمجرد وصولنا إلى سيدني‪ ،‬تم تحميلنا أنا وعائلتي في حافلة ونقلنا إلى وولوغونغ حيث عشنا لمدة عامين‪ .‬خالل ذلك‬ ‫الوقت‪ ،‬درست اللغة اإلنجليزية‪ .‬كنا منعزلين تماما ً خالل األشهر الستة األولى ولكننا بدأنا بالتدريج في تكوين صداقات‪ .‬كنا‬ ‫سعداء عندما بدأنا في لقاء آخرين من الجالية السورية الصغيرة الموجودة في ولونغونغ‪ .‬كما التقينا بأشخاص من الجالية‬ ‫‪.‬السورية سافروا من سيدني لزيارتنا‬ ‫التكيّف مع الحياة في أستراليا‬ ‫يواجه الكثير من أفراد المجتمع السوري صعوبة في التكيف مع الحياة في أستراليا‪ .‬في حالتي‪ ،‬كان من الصعب بشكل‬ ‫خاص معرفة ما هو الدعم المتاح إلعاقتى‪ .‬أثناء وجودي في ولونجونج‪ ،‬حاولت مناقشة مرضي مع طبيبي العام‪ ،‬الذي‬ ‫أحالني إلى مستشفى العالج الطبيعي‪ ،‬وكان ذلك مفيداً‪ ،‬لكنني تلقيت ‪ 10‬جلسات فقط‪ .‬لسوء الحظ‪ ،‬لم يتم إخطاري بشأن‬ ‫دعم اإلعاقة في تلك السنوات األولى ‪ -‬لم أعرف بشأن البرنامج الوطني لتأمين اإلعاقة‪ 1‬أو أي خدمات أخرى قد تساعدني‬ ‫‪.‬حتى عام ‪2017‬‬ ‫الطريقة التي اكتشفت فيها بشأن البرنامج الوطني لتأمين اإلعاقة كانت أنني ذهبت إلى جلسة معلومات‪ ،‬سمعت عن جلسة‬ ‫المعلومات من خالل مركز موارد المهاجرين‪ .‬لقد ساعدوني للعثور على مزيد من المعلومات حتى أنني سجلت كمشارك‬ ‫‪.‬في البرنامج الوطني لتأمين اإلعاقة‬ ‫أعلم ّ‬ ‫أن هذا البرنامج جديد تماماً‪ ،‬ولكن عندما بدأ هذا النظام‪ ،‬العديد من األنظمة األخرى توقفت‪ .‬مزودو برنامج الوطني‬ ‫لتأمين اإلعاقة و برنامج الوطني لتأمين اإلعاقة ال يزال يبني فهما الحتياجات الناس الذي يزودهم بالخدمة‪ .‬ذلك جعل من‬ ‫‪.‬القطاع أصعب بالنسبة لي ولمجتمعي للوصول اليه‬ ‫تؤثر الثقافة أيضا ً على كيفية رؤية األشخاص في المجتمع السوري وال سيما العائالت للخدمات‪ ،‬على سبيل المثال‪،‬‬ ‫خدمات األشخاص ذوي االحتياجات الخاصة‪ .‬المجتمع السوري هو مجتمع جماعي ‪ -‬وهذا مهم للغاية‪ ،‬تم تصميم برنامج‬ ‫الوطني لتأمين اإلعاقة للتركيز على الفرد وليس الجماعة‪ ،‬لكن عندما تقابل عائلة سورية‪ ،‬عليك أن تتذكر أنهم يرون‬ ‫‪.‬األشياء كعائلة واحدة‬ ‫في بعض األحيان قد يكون هناك خجل‪ .‬وأحياناً‪ ،‬قد يحتاج األشخاص إلى مزيد من التوضيح حول نموذج الخدمة‪ .‬خاصة‬ ‫فكرة أن يكون الشخص ذي االحتياجات الخاصة مستقالً‪ .‬هنا يمكننا وضع دائرتين‪ :‬اإلعاقة والجنس‪ .‬على سبيل المثال‪،‬‬ ‫قد تواجه النساء ذوات االحتياجات الخاصة صعوبة أكبر في الوصول إلى بعض الخدمات بدون أسرهن‪ ،‬ألنهن يرين ّ‬ ‫أن‬ ‫النساء المستقالت يجلبن العار إلى أنفسهن واألسرة‪ .‬قد تشعر األسرة أو المجتمع أن استقالل المرأة يتعارض مع ثقافتها‪،‬‬ ‫لهذا السبب يحتاجون إلى المزيد من جلسات المعلومات‪ ،‬والمزيد من المعرفة حول كيفية عمل الخدمات في أستراليا‪.‬‬ ‫يحتاج العمال إلى رؤية األسرة وفهم سياقها قبل تقديم الخدمات لعائلة سورية أو عراقية‪ ،‬يجب أن يأخذوا في االعتبار الدين‬ ‫والعرق والعمر والجنس وطرق التفكير المختلفة‪0.‬‬ ‫القيام بالمناصرة‬ ‫كما قلت من قبل‪ ،‬لقد ركزت على حقوق األشخاص ذوي االحتياجات الخاصة لسنوات عديدة‪ .‬نظرا ً لعدم وجود دعم‬ ‫مالي لألشخاص ذوي االحتياجات الخاصة في سوريا‪ ،‬فقد اعتقدت دائما ً أنّه من المفيد أن يتمكن أصحاب العمل من رؤية‬ ‫األشخاص ذوي االحتياجات الخاصة في المجتمع ليس فقط على أنهم إعاقة‪ ،‬ولكن كشخص كامل‪ .‬قد يحتاجون إلى ساعات‬

‫‪328  Research handbook on disability policy‬‬ ‫أقل في األسبوع‪ ،‬وساعات عمل أكثر إدارية‪ .‬ال يتمتع العمال في سوريا بحماية ‪ -‬فهم يعملون لساعات طويلة للغاية ‪12 ،‬‬ ‫ساعة في اليوم و ‪ 70‬ساعة في األسبوع‪ .‬هذا صعب جدا ً على أي شخص‪ ،‬ولكنه أصعب على األشخاص ذوي االحتياجات‬ ‫الخاصة‪ .‬يبدو ّ‬ ‫أن عالمة العمل ليست مصممة لألشخاص الذين يعانون من صعوبات‪ .‬من المهم جدا ً فهم احتياجات‬ ‫ّ‬ ‫جميع األشخاص‪ ،‬وليس مجرد قلة منهم‪ .‬على الرغم من اختالف أستراليا‪ ،‬وأن هناك المزيد من الدعم لألشخاص ذوي‬ ‫االحتياجات الخاصة‪ ،‬أتمنى أن تكون هناك سياسات وتعديالت أكثر شموالً لألشخاص ذوي االحتياجات الخاصة حتى‬ ‫‪.‬يتمكنوا من العمل واستخدام مهاراتهم في الوظيفة التي يحبونها‬ ‫بسبب تركيزي على حقوق اإلنسان‪ ،‬بدأت العمل التطوعي بمجرد وصولي إلى أستراليا‪ .‬كنت أرغب في دعم عائلتي‬ ‫ومجتمعي‪ ،‬مجتمع الالجئين‪ .‬لقد رأيت العديد من نقاط الضعف المختلفة للمجتمع وبحثت عن المعلومات باللغة اإلنجليزية‬ ‫وقمت بترجمتها من خالل ترجمة غوغل‪ ،‬ووضعتها على موقع الويب الذي صممته‪ .‬في البداية‪ ،‬بدأت من خالل انشاء‬ ‫مجموعة على فيس بوك في عام ‪ ، 2015‬وفي عام ‪ ،2016‬دعتني رابطة المسلمين اللبنانيين إلى هاكاثون بدأوه باسم‬ ‫‪.‬كويستاثون‪ .‬بعد ذلك‪ ،‬منحوني المال لبدء موقع إلكتروني ومنحوا فريقنا جائزة‬ ‫بهذا المبلغ المالي‪ ،‬بدأنا موقعا ً إلكترونيا ً عن خدمات التوطين لمساعدة األشخاص من خلفيات الالجئين على تحسين حياتهم‪.‬‬ ‫كان هذا هو الجزء األول من الفكرة‪ :‬تقديم معلومات حول مواضيع تشمل الهجرة‪ ،‬وكيف يمكن للناس إحضار عائالتهم‬ ‫إلى أستراليا‪ ،‬وكيف يمكنهم االستقرار في أستراليا‪ .‬أوالً‪ ،‬لقد قمت بترجمة معلومات حول مدفوعات السنترلينك وخدمات‬ ‫االستقرار‪ .‬بعد ستة أشهر‪ ،‬بدأت جزءا ً جديدا ً يركز على كيفية مشاركة الناس في سوق العمل‪ .‬لقد بحثت عن دورات‬ ‫مختلفة لمعرفة كيف يمكن ألبناء مجتمعي تحسين مهاراتهم اللغوية من خالل الدراسة‪ .‬إذا لم يتمكنوا من الذهاب إلى‬ ‫الجامعة مباشرة‪ ،‬فهم بحاجة إلى وقت‪ ،‬ويمكنهم البدء من دبلومة الشهادة المستوى الثالث والرابع‪ ،‬وهذا يمكن أن يساعد في‬ ‫‪.‬تحسين لغتهم‪ .‬قرأت دليل وموقع برنامج الوطني لتأمين اإلعاقة‪ ،‬وترجمت المحتوى للمجتمع‬ ‫في عام ‪ ،2019‬درست تطوير المواقع اإللكترونية لتحسين مهارات الموقع اإللكتروني الخاص بي‪ ،‬ولجعل مدونتي‬ ‫أقوى‪ ،‬اسم المدونة "مركز الالجئين‪/‬الالجئين هاب"‪ 2‬وهي مدونة باللغة العربية‪ .‬لقد ركزت على برنامج الوطني لتأمين‬ ‫اإلعاقة‪ّ ،‬‬ ‫ألن هذه واحدة من أكبر المنظمات التي تقدم خدمات لألشخاص ذوي االحتياجات الخاصة‪ .‬إنّهم يقدمون معلومات‪،‬‬ ‫لكن ليس لديهم معلومات كافية لألشخاص من خلفيات الجئين‪ ،‬ليس لديهم ما يكفي من الوسائط‪ ،‬وليس لديهم ما يكفي من‬ ‫أن هذا مهم جدا ً‬ ‫‪.‬مقاطع الفيديو لزيادة الوعي‪ ،‬وال يترجمون بسرعة كافية إلى لغات المجتمع‪ .‬ال يبدو أنّهم يعتقدون ّ‬ ‫تركيزي األوسع هو أن يتعلم الناس كيف يمكنهم تطوير إنجاز أو خطة حياة‪ .‬لقد تعلمت هذه المهارات بنفسي من خالل‬ ‫البحث والذهاب إلى المنتديات والقراءة على اإلنترنت والتحدث إلى مزودي الخدمة ومحاوالتي الجاهدة إليجاد خيارات‬ ‫لوضعي الخاص‪ .‬أوالً‪ ،‬أعددت استطالعا ً على فيس بوك للجالية السورية‪ ،‬وعندما أرسلوا لي أفكارهم‪ ،‬وما يحتاجون إليه‪،‬‬ ‫‪.‬بحثت عن المعلومات‪ ،‬وأخذت المحتوى وترجمته إلى اللغة العربية‪ ،‬ووضعت الموارد‬ ‫يرى الكثير من الناس مدونتي أنّها توفّر معلومات مفيدة‪ .‬بين عامي ‪ 2017‬و ‪ ، 2020‬زار ما يقارب من ‪ 88000‬شخص‬ ‫موقعي‪ .‬أحاول الحصول على معلومات حقيقية وتوجيهها عبر الموقع اإللكتروني‪ ،‬وهذا يمكن أن يساعد مجتمعي على فهم‬ ‫‪.‬ما يجري‬ ‫في عام ‪ ، 2019‬دعتني إحدى الجامعات للمشاركة في فرصة مشروع بحثي‪ .‬في البداية‪ ،‬كنت خائفا ً جدا ً من القيام بهذا‬ ‫المشروع‪ ،‬أعجبتني فكرة المشروع ولكني كنت خائفا ً ّ‬ ‫ألن لغتي اإلنجليزية ليست قوية جداً‪ .‬لكن زميلتي‪ ،‬زميليتي في‬ ‫الفريق في مركز موارد المجتمع للمهاجرين‪ ،‬أعدتني للذهاب إلى المقابلة‪ ،‬وساعدتني في إعداد سيرتي الذاتية‪ .‬دعمني‬ ‫فريقي كثيرا ً للحصول على هذه الفرصة‪ .‬تحدثنا كثيرا ً وبشكل دائم عن اإلعاقة‪ ،‬وما يمكننا القيام به لتحسين حقوق‬ ‫‪!".‬األشخاص ذوي االحتياجات الخاصة‪ ،‬وقالوا لي‪" ،‬هذا هو مكانك‪ ،‬اذهب للعثور عليه‪ ،‬انطلق واحصل عليه‬ ‫عندما جئت إلى المقابلة‪ ،‬كنت أفكر بشكل أساسي "لغتي اإلنجليزية ضعيفة بعض الشيء‪ ،‬ال أستطيع التحدث"‪ ،‬لكنّهم‬ ‫سألوني كثيرا ً عن حقوق اإلنسان‪ ،‬وهذا هو مجالي‪ ،‬وقد استمتعت بالحديث عن ذلك الموضوع‪ .‬المحاور أحب ما قلته‪.‬‬ ‫تحدثت عن نشاطي ومشاركتي السياسية‪ ،‬وعن الحقوق االقتصادية‪ ،‬معرفتي كشخص يعاني من إعاقة وعمل بجد للحصول‬ ‫‪.‬على وظيفة ‪ -‬لقد ركزت على هذا المجال كثيراً‪ ،‬إنّه مهم جدا ً بالنسبة لي‬ ‫في المستقبل‬

‫‪Narrative 9: My work advocating for the Syrian community  329‬‬ ‫في المستقبل أرغب في إنشاء تحالف بين العائالت السورية‪ ،‬ألنّه من المهم جدا ً لألشخاص ذوي االحتياجات الخاصة‬ ‫أن يكون لديهم تحالفات‪ ،‬أو أن يكون لديهم مجتمع صغير لمساعدتهم على رؤية حقوقهم والنضال من أجل هذه الحقوق‪،‬‬ ‫وشرح احتياجاتهم أو حقوقهم‪ .‬سيساعدهم التحالف على معرفة ّ‬ ‫أن أستراليا دولة ديمقراطية‪ ،‬يمكن أن يساعد التحالف الناس‬ ‫‪.‬على فهم الخدمات وتحسين الخدمات لألشخاص ذوي االحتياجات الخاصة‬ ‫في سوريا‪ ،‬ال يمكنك مناقشة األمور بشكل علني كما هو الحال هنا‪ ،‬ألنّنا عشنا في ظل حكم ديكتاتوري لمدة أربعين‬ ‫عاماً‪ ،‬فنحن أكثر انغالقاً‪ ،‬ومجتمعا ً منغلقاً‪ ،‬ونخاف بسبب الحكومة‪ .‬الكل يخاف من الحكومة ّ‬ ‫ألن الجمعيات غير شرعية‬ ‫والتحالفات غير شرعية‪ .‬يشعر الناس بالتوتر الشديد عندما تتحدث معهم حول إنشاء تحالف أو جمعية ‪ -‬فهم يحاولون‬ ‫االنسحاب‪ .‬قد يقولون‪" ،‬حسناً‪ ،‬يمكنك فعل ذلك ولكن ال يمكنني المشاركة‪ ".‬ويمكنك أن ترى ّ‬ ‫أن الجميع يقاتلون بعضهم‬ ‫‪.‬البعض‪ ،‬ألنّهم يتعرضون للضغط‬ ‫تجعلني نضاالت الناس في مجتمعي أعتقد أنّنا بحاجة إلى تحالف من أجل الناس‪ ،‬لمساعدتهم في الدفاع عن حقوقهم‬ ‫ومناصرة بعضهم البعض‪ ،‬ومساعدتهم على مشاركة قصصهم‪" :‬حسناً‪ ،‬هذا ما رأيناه"‪ .‬كثير من األشخاص الذين أعرفهم‬ ‫يتمتعون بخبرة سنتين أو ثالث سنوات في التعامل مع برنامج مخطط التأمين الوطني تجاه اإلعاقة‪ ،‬ويفهمون كيف يمكن‬ ‫أن تتحسن حياتهم‪ ،‬لكن ليس لديهم صوت‪ .‬التحالف هذا مهم للتركيز أو تصميم شيء مثل التحالف‪ ،‬لقد بدأت في جمع الناس‬ ‫معا ً للتفاوض مع بعضهم البعض‪ ،‬وأن يشعروا براحة أكثر في التجمع ومناقشة قضاياهم‪ ،‬وبعد ذلك‪ ،‬الستخدام أصواتنا‬ ‫‪.‬لتحسين القطاع‬ ‫ما زلت أرغب في تحقيق كل التغييرات التي حلمت بها في وقت سابق من حياتي‪ ،‬أرغب في تطوير برنامج لدعم‬ ‫األشخاص ذوي االحتياجات الخاصة من سوريا‪ .‬أودّ أيضا ً أن يكون لدي قناتي الخاصة على يوتيوب لمناقشة القضايا‬ ‫بطريقة مختلفة للمجتمع‪ ،‬أود إحداث تغيير‬

28. The Australian National Disability Insurance Scheme and disability identity: how welfare policy impacts narratives of disability Tessa-May Zirnsak

INTRODUCTION The argument of this chapter is about stories. People with intellectual disability tell stories about themselves and about what it means to be disabled. Academic Joe Caldwell (2011) undertook a study into the experience of people with intellectual disability engaging in self-advocacy. For the participants, telling stories was central to how they advocated, but it was a fraught experience. One participant claimed: There is a shared experience. And people talk about that! They talk about the things that have happened to them. And it is hard to talk about that in front of the stranger who might not understand, or who might think it is stupid, or might say something in the middle of somebody’s story. And it is embarrassing at times too for people who get out and share an emotional story. So people have a hard time with that. (Participant with intellectual disability in Caldwell, 2011, pp. 319–320)

Stories have a role in constructing meaning. Under the Australian National Disability Insurance Scheme (NDIS), people with disability are asked to tell narratives of how disability affects their lives in order to determine what funding support they receive from government. The person must demonstrate that they unequivocally need support and that by receiving support, the negative impacts of their disability will be lessened. This chapter will address evidence that stories of need and deficiency may attract more funding than stories that include positive or value-neutral accounts of disability. Therefore, the NDIS application process exerts influence over how people with disability tell stories about themselves, and by extension, about disability. Disability communities have a right, as enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations, 2006), to define disability and have their experience and advocacy work taken into account. It is not the role of external actors to make sense of what it means to be disabled – only the disability community can do this (David & West, 2017). NDIS application processes diminish this right by incentivizing deficit-oriented interpretations of disability. The advent of the NDIS has radically changed the Australian disability welfare policy landscape (David & West, 2017, p. 332; Horsell, 2020, p. 1; Miller & Hayward, 2017; Earle & Boucher, 2020, p. 2). Overseen by the National Disability Insurance Agency (NDIA) and governed by the National Disability Insurance Scheme Act 2013 (Cwth) (henceforth the Act), the NDIS is a response to an ‘inequitable, underfunded, fragmented [and] inefficient’ disability policy landscape (Productivity Commission, 2011, p. 5). Many people with disability report being better off under the NDIS than they were under the old system (Every Australian Counts, 2018a; Howard et al., 2015, p. 1373; Kendrick, Ward & Chenoweth, 2017, p. 1334); however, 330

The Australian National Disability Insurance Scheme and disability identity  331 the NDIS has received significant critique (see for example David & West, 2017; Loadsman & Donelly, 2020; Office of the Public Advocate, 2018; Tune, 2020; Winther, 2014). There is no uniform perspective on the NDIS among people with disability in Australia (see for example Every Australian Counts, 2018a; Horsell, 2020; May et al., 2017; Reddihough et al., 2016). This chapter puts aside debate on whether the NDIS has had a positive impact overall to enable a critique of how the NDIS application process constructs disability. This piece is not intended to give a full overview of the NDIS as a welfare policy, but rather to examine the storytelling in the application process as presenting a specific problem for welfare policy. To demonstrate that the NDIS does influence narratives of disability, this chapter will follow several key steps. First, the background to the NDIS is presented. This section includes taken-for-granted assumptions on which this chapter is based, as well as areas where the NDIS has moved away from fulfilling Australia’s responsibilities under the UNCRPD. Second, an outline of the NDIS application process is provided. Third, this chapter addresses the NDIS application process as deficit-oriented. This section relies on grey literature, scholarly articles and a case study. Fourth, the undermining of disabled people’s self-advocacy will be addressed as it relates to storytelling. Fifth, broader implications of the impact of the NDIS on narratives of disability are discussed with reference to Australia’s obligations under the UNCRPD. This chapter will conclude with suggestions for how welfare policy can be better developed to support narratives of disability that are consistent with how disability communities see themselves. International examples of disability policy may be relevant to the central argument of this chapter; however, international examples are not considered. As the central argument of this chapter is philosophical in nature, making a point about what it means to be disabled and who gets to control narratives about disability, this chapter does not rely on qualitative data from people with disability beyond what is included in the wealth of available literature.

BACKGROUND In 2007, Australia became one of the first nations to ratify the UNCRPD (Department of Social Services, 2017). In the years since, the UNCRPD has become the dominant framework for defining the rights of people with disability in Australia and globally (Soldatic et al., 2014, p. 7; Perry, Waters & Buchanan, 2019, p. 211). It aims to ‘promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’ (United Nations, 2006). The UNCRPD ‘includes being experienced as a valued human being, as well as respect for identity and diversity’ (Hilberink & Cardol, 2019, p. 329). Key to this approach is the understanding that people with disability are a political group. Politicized approaches to disability (for example, the social model) emphasize that disability is located ‘not within the individual but within the relationship between the individual and their environment’ (Putnam, 2005, p. 189; see also Barnes, 2016, p. 56). By viewing disability as produced through relationships, rather than as produced through pathology, disability becomes a value-neutral political category (Longmore, 2003; Wade, 2017; see also Putnam, 2005). Taking disability as a political category in this chapter, as the UNCRPD does, makes it possible to view storytelling as a political activity with an impact on the rights of the disability community. The UNCRPD guarantees ‘respect for difference and acceptance of persons with disabilities as part of human diversity

332  Research handbook on disability policy and humanity’ (United Nations, 2006). As this chapter will illustrate, the principle of accepting people with disability as a part of diversity is perhaps the most troubled right in the context of the NDIS application process. Australian policymakers responded to the groundbreaking change in the disability rights landscape following the ratification of the UNCRPD with the implementation of the NDIS (Soldatic et al., 2014, p. 7; Treloar, 2021, p. 5). Welfare policy has a role in shaping both the experience of people with disability and the ideological background from which disability is constructed (Bacchi, 2009; Horsell, 2020, p. 2; Putnam, 2005, p. 193). Consistent with the UNCRPD, the ideological positioning of the NDIS approaches people with disabilities as active bearers of rights rather than passive recipients of welfare (Soldatic et al., 2014, p. 7). Subsequently, the Australian shift to the NDIS presents a change in how the Australian government approaches disability. However, the extent to which the NDIS has upheld all rights outlined in the UNCRPD can be questioned.

THE APPLICATION PROCESS: WHAT HAPPENS? The NDIS operates as an individualized funding body, with participants allocated a specific amount of funding for agreed services, as determined on a case-by-case basis. The NDIS does not operate as a traditional welfare model whereby funding is directed to service providers. All funding is allocated to individuals, with the intention that participants will then choose which providers they use. To make sense of the role of the application process in manufacturing narratives of disability, it is essential to first outline the steps involved in an application to the NDIS. Applying for funding through the NDIS involves two major administrative stages (see Table 28.1), which will be addressed in turn. The first stage is to make an ‘access request’. This process is largely administrative, requiring evidence of diagnosis from health professionals, confirming permanency of disability. This evidence is in the form of a brief statement detailing the negative impacts the impairment has on people with disability’s lives. It is important to note, not all types of disability are covered by the NDIS. People who are successful are then able to proceed to the next stage of the application where they outline their individual needs. People who are unsuccessful are entitled to appeal the decision. After being approved to participate in the NDIS, participants commence stage two. Stage two involves making a ‘plan’ outlining the person’s goals and what supports they will require to achieve these goals (National Disability Insurance Scheme, 2020). Goals may include living independently, engaging in paid work, ordering without assistance in a restaurant, and so forth. Participants are required to justify their goals and how achieving them would improve their life against key domains defined by the NDIS. It is up to the participant or their guardian to choose and justify goals for their NDIS plan. Then, the person provides a list of supports that would make achieving their goals possible (National Disability Insurance Scheme, 2020). The person’s goals and associated requests for services are discussed in a meeting with a Local Area Coordinator (LAC) appointed by the NDIA, and then the LAC refers the case to a planner. The planner evaluates the plan and awards funding based on what they believe are reasonable and necessary supports within NDIS guidelines. The NDIA has their own outline for the nature and purpose of the supports that are provided by the NDIS. Supports must fall into one of three categories: (1) core supports, addressing

The Australian National Disability Insurance Scheme and disability identity  333 everyday activities; (2) capacity-building supports, addressing growth toward independence, and; (3) capital supports, addressing one-off large equipment expenses. Only items that fall into these three categories are eligible to be funded (National Disability Insurance Scheme, 2021b). There have been significant high-profile cases challenging the NDIS’s assessment of ‘reasonable and necessary’ (see for example, Dale, 2020; Dickinson & Smith, 2020; Foster et al., 2016, p. 31). These supports should increase the person’s independence and represent value for money, among other criteria (National Disability Insurance Agency, 2019; Productivity Commission, 2017, p. 68). This planning stage is the step that is most relevant to the concept of policy impacting narratives of disability and will be the locus of analysis in the remaining sections of this chapter. The NDIS application process can be thought of as soliciting three narratives from participants: (1) a request for participants to supply an account for an average day in their life; (2) a narrative for what the disabled person’s life would be like with the right support; and (3) an implied story of what it is like to be a person with disability living in Australia. In stage 2, along with their plan, NDIS participants provide a narrative of their daily life. Strong NDIS applications will have thematic links between the narrative of the person’s life, and the justification for requested support. Subsequently, the NDIS application process covertly incentivizes people with disability and their representatives to construct a narrative of how the requested support will assist them to overcome the barriers caused by their disability. In other words, disabled people and their representatives request support from the NDIS in the full knowledge that the NDIS may reject the request if they believe that the support will not assist the person to achieve their goals. For example, for a person to improve their fine motor skills via the NDIS they must link this aim to a specific goal that relates to one of the three categories that the NDIS will fund. Then, they must provide an outline of what professionals or services are required to meet this goal. To demonstrate the need for funding to develop this skill, people may list how their life is negatively impacted by not having this skill (for example, the things they cannot do) but would be improved if they could have the funding to develop said skill. As a result, people with disability may avoid positive or value-neutral interpretations of their disability in their plan. Highlighting negative impacts and disregarding positive impacts of disability is a strategy to gain the funding requested. However, telling stories of disability under these conditions has implications for broader social narratives about what it means to be disabled. The steps that people with disability must follow in creating their plan are complex and involve sharing significant narratives of the nature and context of their lives. The outline of the NDIS application process provided in this section now positions us to critically evaluate how this application process constructs meaning about disability through the ways that the policy influences storytelling.

THE NDIS APPLICATION PROCESS AS DEFICIT-ORIENTED, AND WHY IT MATTERS While the claim has been made that the NDIS is based on progressive attitudes (National Disability Insurance Agency, 2021a), key parts of the application process are rooted in medicalized understandings of disability (Horsell, 2020, p. 4). In this section, the NDIS application process will be evaluated in terms of its consistency with how disabled people understand disability independent of the NDIS, and Australia’s responsibilities under the UNCRPD.

Summary of NDIS application stages and their implications

Note: Data taken from National Disability Insurance Scheme (2021a).

Stage Tasks Completed 1: Access Request ●Evidence of disability status supplied by a health professional, which is then evaluated by NDIS staff. ●The person is either advised they are not eligible for the NDIS and have a right to appeal this decision OR the person is advised that they are eligible and invited to create a ‘plan’ for review in stage 2. 2: Individual Plan ●Person with disability or their representative makes a ‘plan’, outlining the support they require from the NDIS. This plan includes a justification for the requested services, outlining how the services will reduce the negative impact of the person’s disability. ●Justifications for funding should outline how the requested support will increase the person’s capacity. As such, plans are individually tailored and strongly related to the person’s individual circumstances. ●NDIS staff evaluate the plan and arrive at a decision of how much funding to award the person, and what this funding should be used for. The person can appeal this decision. ●Plans are typically reviewed at varying time points to determine if the participant’s needs or goals have changed and to monitor progress from the previous iteration of their plan.

Table 28.1

Implications ●Largely bureaucratic stage, concerned with delineating who is and is not disabled. ●In this stage, the state exercises power over what counts as disability and what kinds of disabilities are eligible for financial support. ●Disabled people or their representatives must construct a version of the person’s life outlining their needs as well as their capacity for assimilation into ableist cultural and social institutions and norms. ●Individualized assessment diminishes the shared experience of disablement. ●In strong NDIS applications, storytelling about the person and their needs constructs the person’s disability as a barrier that can be overcome with appropriate support, justifying the need for funding.

334  Research handbook on disability policy

The Australian National Disability Insurance Scheme and disability identity  335 As identified in the previous section, stage 1 of the application – the access request – requires disabled people to provide medicalized evidence of their disability status. The requirement to provide medicalized evidence – usually a diagnosis – is evidence of NDIS reliance on medicalized understandings of disability to demarcate who is considered to be disabled. Eligibility to the NDIS is based in medical opinion of what counts as disability, without reference to a subjective experience of impairment. The impact of disability on the person is interrogated in stage two of the application – after the person has been evaluated as having an eligible disability. Both stages rely on the medicalized perspective that disability has an exclusively negative impact and should be mitigated as much as possible. Based on the categorization of negative impacts of disability as significant to determining funding from the NDIS, the NDIS application process can be thought of as deficit-oriented. Deficit-oriented approaches to disability fail to recognize the positive aspects of disability and overstate the negative impacts (Barnes, 2016, p. 56). Stage two of the application process has significant opportunity and implication for storytelling of disability identity. The storytelling that people with disability must engage in to be successful in the request for funding is aimed at making sense of the level of need the person has. In the context of public policy, ‘essentialist interpretations of disability effectively allow non-disabled experts [including medical experts and experts hired directly by the NDIS such as LACs and planners] to assert their prejudicial understanding of disability, thus ignoring the possibility of disabled people positively endorsing their disability-identity’ (Smith, 2005, p. 561). Non-disabled professionals are only able to assert prejudicial understandings of disability because of limited contact with narratives of disability pride and advocacy and limited knowledge of the rights of people with disability. The problem of essentialist interpretations of disability among staff involved in welfare policy is exacerbated in the context of the NDIS by reliance on the presence and impact of deficits associated with disability to determine an individualized funding package. In the NDIS application process, values of integration into non-disabled cultures and norms are evidenced by the use of storytelling to make sense of how disabled people’s ways of living are both different and inferior to those of non-disabled people. By soliciting storytelling to assess deficit, the NDIS application process sends the message that disabled ways of living are inferior to non-disabled people’s lives as a taken-for-granted assumption. This is contrary to Australia’s obligations to value disability as a part of human diversity under the UNCRPD. People applying to the NDIS are subsequently incentivized to tell stories about their lives and about disability that silence disability advocacy and advocacy-informed perspectives, so that non-disabled NDIS staff members do not have to challenge their own perspective. For example, people with disability may emphasize not being able to perform tasks of daily living or be included in the community without funding through the NDIS. In this sense, the NDIS application processes exerts influence over the stories of people with disability by first requiring storytelling on the part of the participant, and by second using that storytelling to make sense of the person’s individual level of need and subsequent level of funding. To demonstrate the insidiousness of a deficit-oriented approach to disability in the NDIS application process, it is useful to turn to the experiences of people accessing the NDIS. In particular, this section will focus on a case study of Isobel (name has been changed), an 11-year-old non-verbal autistic girl whose mother applied to the NDIS on her behalf. This case study came to the knowledge of the author through engagement with civil society groups (for an example of a single case study based on author experience, see Erevelles & Minear, 2010).

336  Research handbook on disability policy Isobel’s mother had made the decision to engage a psychologist to aid in Isobel’s application for the NDIS. Isobel’s psychologist was present at the planning meeting between an NDIS representative and Isobel’s mother. Isobel, however, was not present despite her care team’s suggestion that her presence would demonstrate her complex behaviour to NDIS staff. In the meeting, Isobel’s mother provided information, as the NDIS does not have provision for children with limited communication to participate meaningfully in their application. Thus, it fell to Isobel’s mother to speak about Isobel’s life in support of her plan. Isobel’s mother provided information about activities of daily living that Isobel cannot (or would not) do. Isobel’s mother provided information of Isobel’s incapacities to the best of her ability. After the meeting, the psychologist assisting with Isobel’s application criticized the mother’s performance in the meeting – specifically how she had spoken about Isobel – on the grounds that she ‘made Isobel sound good’, and that this may contribute to a lower package being granted. The experience of Isobel’s mother and the criticism from the psychologist demonstrate key issues around disability identity that have been manufactured by the NDIS application process. The exclusion of Isobel from meaningful participation in the process beyond demonstrating her complex behaviour is concerning. This, in conjunction with the remark made by the psychologist in response to Isobel’s mother’s performance, makes clear that the NDIS application process incentivizes disabled people and their representatives to tell stories of deficit. The NDIS application process positions Isobel’s mother as holding two conflicting roles in relation to her daughter. The first role is that of a mother, who knows her child, and can see the best in her. She may interpret her role as one of mediation between Isobel and a disabling world (Fisher & Goodley, 2007). The second role is representing her daughter for the purposes of accessing the NDIS. Within this role, Isobel’s mother is incentivized to construct and demonstrate Isobel’s deficits so Isobel is granted the largest funding package possible. That Isobel’s mother is taking on two roles – as a mother and a representative – emphasizes the complexity of navigating the NDIS. As a mother, she wants to portray and emphasize her daughter’s capacity and ability. However, as a representative she understands the necessity to emphasize deficits given the neoliberal frameworks the NDIS operates within. Isobel’s story illustrates the significance of resources to engage with professionals to assist with NDIS applications. Organizations and civil society groups are available to assist people to tell stories that are more likely to attract funding (Every Australian Counts, 2018b; see for example Summer Foundation, 2020). Some services have been created on a for-profit basis to meet this need (see for example planHELP, 2021), while existing services have increased their offerings to include NDIS preparation. People with access to social or financial capital are more likely to be granted their requested supports than people with limited social capital (Bigby, 2020, p. 312), as they can engage support to become ‘literate in the language and principles of the system’ (Soldatic et al., 2014, p. 8). Experts familiar with the NDIS can help translate experiences of disability into language that is compelling to a NDIS planner. This was the case for Isobel and her mother. Professional assistance for the application may include framing support needs specifically so that they fall into the three categories of support the NDIS will fund. They may also include coaching on framing disability as negative. Often, people with disability who have the resources to access such services are relieved to learn they can access assistance (Treloar, 2021, pp. 14–15). However, these services are only accessible

The Australian National Disability Insurance Scheme and disability identity  337 to those who can afford them, suggesting that people with access to resources are more likely to receive support to tell their story. People with intellectual disability with complex behaviour or from culturally and linguistically diverse backgrounds are less likely to have access to social and financial capital in the planning stages of their NDIS application, and so are less likely to be able to access experts who can assist them (Cortese et al., 2020, p. 5; Meltzer & Davy, 2019, p. 251). People who experience the greatest difficulty accessing the NDIS typically: have multiple and/or severe disabilities requiring various forms of support, often compounded by experiences of trauma; experience issues with interpersonal engagement, such that they have limited family support and/or are unable to live with others; engage in complex behaviours that can put themselves or others at risk of harm; are or have been engaged in multiple government service systems; have a history or are at risk of unstable accommodation, homelessness and/or periods in detention in the criminal justice and/or mental health systems; have exhausted or are at risk of exhausting service providers and workers (Office of the Public Advocate, 2018, p. 5). These groups may be less able to adopt a strategy in telling their story of themselves in the NDIS application that is one of both deficit and possibility for assimilation. The engagement of professionals to assist people in telling their stories is demonstrative of how stories of disablement have become co-opted to meet the NDIS framing of disability as negative; however, these skills are only available to people with the means to access these professionals. The problem of manipulated storytelling comes to a head in planning meetings with NDIS staff (i.e. planners or LACs). The Office of the Public Advocate (2018, p. 16) has noticed that following the rollout of the NDIS, there has been a change from NDIS staff ‘initially taking a principled stance of only talking directly with the person with disability and not their guardian or representative to now bypassing the person in the interests of efficiency and a perception that the professionals “know best”’ (Office of the Public Advocate, 2018, p. 16; see also Perry et al., 2019, p. 217). Such an approach from planners and LACs is counter to the Act, which stipulates that the person should be able to have their preferences listened to, and to Australia’s obligations to value disabled people as a community group under the UNCRPD. Further, failure to listen to the person represents a failure to listen to the very stories that the NDIS application process asks for as a condition of applying. The problem of NDIS planners and LACs not listening to people with disability in the application process represents an intervention into the problem of who is asking for stories, who is telling stories, and who is listening to these stories. The Office of the Public Advocate (2018, p. 16) has observed that NDIS staff may struggle to ‘appreciate the complexity of people’s situations’. This may be a result of ‘insufficient skill, expertize and assessment support’, which is not remedied by failing to listen to the stories and perspectives of people with disability. The Act mandates that the statement must be authored and submitted by the person with disability or their family. However, there are unsubstantiated reports from civil society and advocacy groups claiming that NDIS employees may write the statement on behalf of people with intellectual disability and/or complex needs. People with intellectual disability are particularly vulnerable to this (Office of the Public Advocate, 2018; Perry et al., 2019, p. 217). This was the case in Isobel’s NDIS application. The LAC involved in her case wrote the statement of goals and aspirations on behalf of Isobel and her mother. The LAC wrote the statement in the first person from Isobel’s perspective, despite Isobel being non-verbal and only referring to herself in the third person. This is problematic from a disability rights perspective, because the NDIS is then evaluating a story from one of their own staff members to make sense of whether

338  Research handbook on disability policy the person is eligible for funding. Solicitation and handling of stories by NDIS staff and by the structure of the NDIS application process more broadly is an area of tension with significant implications for broader narratives of what it means to live with disability in Australia.

SELF-ADVOCACY AND NARRATIVES OF DISABILITY The problem of deficit-oriented understandings of disability in the NDIS may be manufactured by people working within the disability industry and policymaking who believe that normalization is synonymous with empowerment for people with disability (Wolfensberger, 2002, p. 252). Without recognising disabled people as a part of human diversity and the right of disabled people to determine their group identity (United Nations, 2006), there is a risk of diminishing the positive identity that people with disability may be able to develop. This risk is embodied in the application process for the NDIS. People with disability have both the right and capacity to be proud of every part of who they are (United Nations, 2006). There is a shared experience of disability, and this shared experience is a catalyst for developing a sense of community. People with intellectual disability benefit from being able to form relationships with peers because these relationships generate a sense of solidarity when facing disability-specific challenges. Subsequently a sense of community is built (Caldwell, 2011, p. 320). However, the NDIS – as demonstrated in the application process and structure of the scheme – does not have an investment in cultivating a culture of disability that is consistent with disability pride and acceptance, nor is it interested in cultivating disability advocacy and activism aimed at generating pride and a sense of community. This is evidenced by deficit-oriented interpretations of disability evidenced in the application process, and its impact on the disability advocacy landscape. Social movement toward celebrating disability identity and culture has been occurring internationally since the 1960s (Caldwell, 2011, pp. 315–316; Longmore, 2003, pp. 215–225). However, the way the NDIS application process uses the stories of participants to determine funding presents challenges to the continuation of this movement in Australia. The UNCRPD (United Nations, 2006) emphasizes these challenges through providing a doctrine outlining the goals of the disability rights movement. Australia’s commitment to the values enshrined in the UNCRPD is troubled by the NDIS application process and its implications. The use of storytelling to prove that disability is a negative thing for the purposes of the NDIS application process co-opts disabled storytelling to construct a deficit-oriented narrative of disability. Disability advocacy is a way to counter deficit-oriented perceptions of disability and policies informed by problematic assumptions about disability. However, disability advocacy services have seen a reduction in funding following the rollout of the NDIS, prompting concern from the United Nations Committee on the Rights of Persons with Disability (Australian Federation of Disability Organisations, 2019). The Victorian Council of Social Services (2016) has expressed that the NDIS forces people with disability to exchange their collective voice (in the form of advocacy) for welfare services, while the Physical Disability Council of New South Wales has claimed the cuts to advocacy services threaten the future of the organization (Knaus, 2017). The failure of the NDIS to fund advocacy organizations erodes the capacity of advocacy organizations to counter the problematic assumptions cultivated in the NDIS application process about what it means to be disabled in Australia. Further, the defunding of

The Australian National Disability Insurance Scheme and disability identity  339 advocacy services undermines the right of people with disability to form a collective identity (United Nations, 2006). The nature of advocacy work is that it benefits whole communities, not just the direct participants of advocacy organizations. NDIS categories for funding limit the availability of support for participants to engage in self-advocacy groups, unless they can demonstrate that such engagement would increase their capacity. While there is evidence to suggest that people with disability do develop independence, social skills and work skills through engaging in activism (Frawley & Bigby, 2015, pp. 258–261), self-advocates are more often motivated to engage in advocacy by a sense of justice (Frawley & Bigby, 2015, p. 257). The Melbourne-based Self-Advocacy Resource Unit (SARU) is one such organization that has been impacted by the new welfare policy landscape post-NDIS. They facilitate groups which they describe as ‘run by people with disabilities who have joined together to have their voices heard and to support each other’. Self-advocates work together to make sure they have the same rights, choices and opportunities as anyone else (Self-Advocacy Resource Unit, 2017). However, the funding arrangement set up through the NDIS makes it difficult for these organizations to continue to operate. For a person to have their funding directed to supporting their involvement in an advocacy organization, the person would have to demonstrate their involvement is consistent with NDIS funding values and policies. Supports to access self-advocacy most closely align with the ‘core supports budget’ under ‘assistance with social and community participation’ (National Disability Insurance Agency, 2021b); however, non-disabled stakeholders have expressed that NDIA staff are not likely to award funding in this category for participants to engage in advocacy. The assumptions behind the NDIS application process outlined in this section illustrate how a policy approach to disability as a social problem limits the capacity for the cultivation of disability pride. Approaching disability as a social problem requiring individualized solutions has implications for the disability advocacy movement more broadly. It represents a failure to recognize disabled people as a group with shared identity as the UNCRPD (United Nations, 2006) does. By influencing the stories of people with disability and limiting access to support to further develop self-advocacy skills, the NDIS application process fails to uphold Australia’s obligation to allow the disability community to form their own identity under the UNCRPD (United Nations, 2006) and suppresses positive or value-neutral narratives of what it means to be disabled in Australia.

WHAT DOES THIS MEAN FOR NARRATIVES OF DISABILITY? The NDIS exerts influence over the stories people with disability share by creating a landscape that urges people to talk about their disability from a deficit perspective. Discussing disability in such a way diminishes evidence that people with disability also experience their disability as a strength and unifying feature (see for example Docherty et al., 2005; Harmon, 2004). Further, the NDIS’s influence on disabled storytelling interferes with the right of disabled people, as a minority group, to form a group identity based on pride (United Nations, 2006). D’Cruz (2008, p. 21) provides an account for how Australian welfare policy has a pattern of requiring minority groups (D’Cruz argues with reference to Indigenous Australians) to demon-

340  Research handbook on disability policy strate their identity in the government’s terms – not in the language or mechanisms that are most appropriate to the person or their community. Under the NDIS, paternalism and institutional discrimination may be further obscured compared to previous welfare policy landscapes, but they are still present. The argument could be made that the language describing disability as negative as prescribed by the application framework has manufactured an increase in negative language around disability. That is, that disability is fundamentally a bad thing for both individuals and society more broadly, and that people with disability are only deserving of assistance from the state in exchange for attempts to mitigate the impact of their disability. Oliver (1996, pp. 75–77) explains: ‘professionalised service provision within a needs-based system of welfare has added to existing forms of discrimination […] based upon invasions of privacy as well as creating a language of paternalism which can only enhance discriminatory practices.’ In other words, assessing people on an individualized basis generates inequality due to the importance of invasions of privacy to make individual assessments possible, and through using and normalizing language and approaches to disability that rely on outdated and discriminatory attitudes to disability. Individualizing disability (as the NDIS tries to do) not only contributes to the manufacturing of paternalistic attitudes toward disability, it also takes away the perspective that disability is a part of a texture of human relationships of interdependence (Bostad & Hanische, 2016, p. 375; Kittay, 2011, p. 51; Leipoldt, 2005, p. 29; United Nations, 2006). The stated aims of the NDIS and the stated aims of the disability community are not synonymous (although there is some evidence that the NDIS may assist individuals to achieve their own versions of enablement). However, the disability self-advocacy movement’s conceptions of disability and how policy should address the issues disabled people face is not equivalent to the ideological background or application process of the NDIS. David and West (2017, p. 339) have argued that whether a policy is enabling or limiting is based on what it means to be enabled, how enablement is measured, and who is doing the measuring. Previous sections outlined issues of the NDIS application process, clarifying that it is the NDIA who exercises decision making around who is disabled and what enablement means to the disability community. David and West (2017) remind us, it is not the role of external actors to make sense of what it means to be disabled – only the disability community can do this. In order to rectify the issues in the NDIS application process, substantial changes would need to be made to the way disability is approached in the welfare policy landscape (Bacchi, 2009). There are many varying options for how the problems evidenced in this chapter can be addressed in the NDIS application process. Addressing these problems would both cultivate disability pride and assist Australia in meeting its obligations under the UNCRPD (United Nations, 2006). It is worth addressing three such strategies briefly. The first strategy is to reframe the NDIS application process through a strengths-based lens. Strengths-based approaches require professionals to change their approach to one where the people they work with can have their skills appreciated and valued (Saleebey, 2009, p. 15). Strengths-based approaches require professionals to approach an individual’s circumstances through the lens of resources, including resilience, patience and ingenuity, rather than through a lens of pathologization (Vishal, 2018, p. 47). As a result, ‘people are viewed positively as resourceful and resilient and their inner value is emphasized’ (Abdullah, 2015, p. 164). In other words, people have lived through challenges and thrived. Policymakers and social workers can learn from how people have coped in challenging circumstances and use these learnings to inform policy and practice more broadly. In the context of the NDIS, a strengths-based

The Australian National Disability Insurance Scheme and disability identity  341 approach could include: (1) conversations with people where the person can articulate their own values and successes, rather than exclusively outlining their deficits; (2) NDIS plans that target areas where the person is already successful, to increase their skills and opportunities in that area; and (3) storytelling from people with disability applying to the NDIS taking on positive aspects, without the person having to fear that identifying their strengths will result in a lower funding package being awarded as a result. These changes would address several of the problems outlined in this chapter, including the manufacture of deficit-oriented narratives of disability and its implications under the UNCRPD (United Nations, 2006). The second strategy for improving the NDIS application process failing to accommodate the complexity of disability identity as outlined in this chapter would be to work more closely with people with disability. In the case of the NDIS where there was some community consultation, changes could be made by engaging in consultation on (1) what people with disability see the problem to be, (2) how the disability community see themselves and their experience of disablement, and (3) how disabled people see the relationship between their disability and welfare services. Welfare policy for people with disability is a complex problem, requiring policymakers to have a nuanced understanding of the experiences of people with disability. The third and final strategy would be to actively engage people with disability in the administration and decision making of policies that impact their lives. To improve the capacity of the NDIS to manage the complexity of disability identity, ‘services for disabled people [should be] controlled by disabled people themselves’ (Malhotra, 2017, p. 14). Control by people with disability of policies that impact people with disability would give the NDIS the necessary tools to manage the complexity of disability narratives and identity, preventing the problems discussed in this chapter on the NDIS application process. Without the capacity to deal with the complexity of disability, the NDIS will continue to elicit distorted stories about what it means to be disabled.

CONCLUSION: WHERE TO FROM HERE? The NDIS application process is not able to recognize the nuance of disability identities, instead requiring people with disability to frame their experience as one of deficit. The application process requires disabled people to tell stories of themselves that ignore positive aspects of disability and emphasize negative aspects in order to access goods and services. These goods and services, coined ‘package’ within the NDIS context, provide people with disability with an opportunity to be active participants within their community, in turn elevating their quality of life and overall wellbeing. There is thus significant economic value in cooperating with NDIS application processes that require people with disability to tell negative stories about themselves and, by extension, disability. This conclusion was attained by undertaking an analysis of NDIS policy documents and legislation, anecdotal evidence from people with disability and disability organizations and by examining the problem of NDIS application processes as it applies to disabled people as a politicized group, rather than a group defined by deficit. The findings of this chapter are significant to the development of disability policy, both in Australia and internationally. The base assumption of policy (in the case of the NDIS, that disability is fundamentally negative) has implications for how minority groups talk about themselves and are framed. As has been referenced throughout, Australia has an obligation

342  Research handbook on disability policy under the UNCRPD (United Nations, 2006) to uphold the rights of disabled people to determine their own identity and be celebrated as a part of human diversity. The NDIS application process does not support the formation of a disability identity that is consistent with the valuation of diversity required to be compliant with the UNCRPD. This is evidenced by deficit-oriented approaches to disability that are integral to the application process. Such deficit-oriented approaches incentivize people with disability to tell stories of disability as a deficit through the individualized funding process of the NDIS, where need is assessed on an individual basis and funding awarded accordingly. Further, and perhaps most significantly, this chapter has demonstrated that people with disability need to be at the forefront of policy formation and implementation. Involving people with disability in policymaking creates the conditions to address the needs of this group without fundamentally misunderstanding how people with disability see themselves and perpetuating harmful assumptions about what it means to live with disability.

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The Australian National Disability Insurance Scheme and disability identity  345 United Nations. (2006). Convention on the Rights of Persons with Disabilities. https://www.un.org/ ​ ​ ​ ​ development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -the-rights-of-persons-with-disabilities-2.html ​ ​ ​ ​ ​ ​ ​ Victorian Council of Social Services. (2016, 1 July). The NDIS isn’t enough. We need strong disability advocacy too. https://vcoss.org.au/analysis/2016/07/disability-advocacy/ ​ ​ ​ ​ ​ ​ ​ ​ ​ Vishal, M. V. (2018). Strengths-based social work: Proposing protective and engagement practice with older adults. Journal of Social Work Education and Practice, 3(3), 46–53. Wade, M. (2017, 18 July). We’re more than a tragedy or inspiration. Star Observer. https://www ​ ​ .starobserver.com.au/news/national-news/victoria-news/more-tragedy-inspiration-jax/160140 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Winther, T. (2014, 12 March). Does the NDIS really offer choice? Ramp Up. https://www.abc.net.au/ ​ ​ ​ ​ ​ rampup/articles/2014/03/12/3961067.htm ​ ​ ​ ​ ​ ​ Wolfensberger, W. (2002). Social role valourisation and, or versus, empowerment. Mental Retardation, 40(3), 252–258.

29. Tracing the welfare–rights connection in American disability policymaking David Pettinicchio

INTRODUCTION In 2019, New York State Governor Andrew Cuomo came under fire from the disability community for proposing cuts to homecare.1 Home or community-based care is essential for people with disabilities to achieve the kind of socioeconomic independence social policies for decades in the United States sought to secure. More fundamentally, without homecare, an issue having become increasingly more central in the politics surrounding Medicaid and Medicare, the right to live free of residential care, nursing homes, and other institutions is jeopardized and, in many ways, rendered practically meaningless. This despite the now over 30-year-old landmark Americans with Disabilities Act (ADA) and the 1999 Olmstead Supreme Court case which made needless institutionalization of people with disabilities when adequate community supports are available discriminatory under Title II of the ADA. But the problem lies in providing those adequate community supports which have been under the jurisdiction of health and social welfare policymakers and policy stakeholders for whom the disability rights dimension is not always salient. Cuomo was responding to threats to Medicaid funding by Republicans in Congress and the Trump administration. Medicaid is the largest payer of community-based care in the United States but while nursing homecare is an entitlement – that is, states are required to find a place in residential care for individuals needing it – homecare is not. When cuts loom, homecare is among the first targeted. This is a gaping institutional hole recognized by both Democrats and Republicans since the Reagan years. Despite some attempts at fixing this problem, little meaningful structural reform has come about. The homecare issue is an example of the intertwining and inseparability of rights and social welfare policy where the former often cannot be mobilized when the latter is unavailable or lacking. This is not unique to disability but is made especially acute in the example described above. Importantly, to understand the meshing of social policy with civil and human rights requires tracing the development of the American welfare state itself, since disability-related policy pre-dates the modern American welfare state. In this chapter, I discuss how United States disability policy beginning in the early 1920s with its focus on rehabilitation emerged alongside the welfare state with a particular focus on employment as a means to independence and citizenship. By the 1970s, this gave way to a more complex multi-paradigmatic field which would include a minority rights model for people with disabilities. This movement in the government led by disability rights entrepreneurs further entrenched a welfare–rights approach to disability and simultaneous client-service/citizen-rights models. But their efforts created a separate-and-unequal system of rights for people with disabilities – a system that for some has gone too far and for others not far enough – a system which showcases the cyclical nature of innovation and retrenchment 346

Tracing welfare–rights connection in American disability policymaking  347 in policymaking, of partial solutions and backstepping. I conclude with several theoretical insights disability policymaking brings to bear including agenda setting and the limits of political entrepreneurship, the effect of backlash and rollbacks on disability policy including compromises and policy half-solutions, and the role of citizen mobilization in policymaking especially when it comes to challenging detractors.

WORK, INDEPENDENCE, AND THE AMERICAN WELFARE STATE The development of the “belated” American welfare state has been described as a series of piecemeal efforts to intervene on behalf of those most deserving of help (Skocpol 1995). People with disabilities were among those groups. As Scotch (2001, p. 24) notes, “The concept of rehabilitation was at the core of the ideology of the emerging American welfare state.” Indeed, one cannot disentangle the rise of the American welfare state from disability policy. Early efforts focused more around providing aid to people who were widely believed to be unable to provide for themselves. By the 1920s, policy began to turn. The 1920 Vocational Rehabilitation Act (a.k.a., the Smith–Fess Act) created a civilian vocational rehabilitation program and expanded the role of the Federal Board for Vocational Education which was created three years earlier. By extending programs to non-veterans, it jumpstarted policy efforts within a confined policy circle in government working to make as many people with disabilities as possible economically independent of the state. This meant providing resources so that people with disabilities could find gainful employment. Over the next 20 years, however, it became clear that policymakers, including champions of rehabilitation who seemingly espoused the notion that anyone could be gainfully employed if made “educable and trainable,”2 did not entirely believe that people with disabilities would be able to find “normal work.” For many, the New Deal era signaled a rapid entrenchment of the American welfare state beginning with the Social Security Act. In that same period, policies like the 1936 Randolph–Sheppard Act were built on the premise that people with disabilities needed special employment as they would never be hired within the regular labor market (Maroto and Pettinicchio 2022). Yet, the “rehabilitationists” (Berkowitz 1987) persevered and the post-World War II period leading up to the Great Society of the 1960s signaled an expansion – philosophically and fiscally – of vocational rehabilitation. This was no small feat considering that through most of the 1940s up to the early 1960s, conservative Republicans and Democrats controlled Congress and therefore social policy. Not only was Congress more conservative, but also the committees of relevance were stacked against those working to expand rehabilitation and other programs that would help people with disabilities. Graham Barden (D-NC), chair of the Committee on Education and Labor which had jurisdiction in the House of Representatives over social policy including disability, called rehabilitation “gobbledygook” (see Pettinicchio 2019). In addition to policymakers’ political entrepreneurship – proactive behavior among elites who had access to resources and influence so as to “change the direction or flow of politics” (Pettinicchio 2013, p. 80; Schneider & Teske 1992, p. 737; see also Pettinicchio 2017; 2019) – they framed their efforts both in terms of a moral obligation to help the deserving but also as an economic imperative to make people with disabilities “tax payers rather than tax burdens” (Pettinicchio 2019, p. 16). This was in part strategic as rehabilitation became seen as a more

348  Research handbook on disability policy palatable option among conservatives compared to cash benefits and expensive institutionalization. Indeed, rehabilitation coincided with the deinstitutionalization movement and may have lent political legitimacy to deinstitutionalization by providing an actual policy alternative to the practice. It also helped that Presidents Truman, Eisenhower, Kennedy, and Johnson actively promoted rehabilitation programs for Americans with disabilities. It would not be until Richard Nixon’s presidency that, for the first time in decades, the president would make little mention of doing something about educational and employment outcomes among people with disabilities. In fact, Nixon actively worked to undermine efforts that would go a long way in allowing citizens with disabilities to lead independent and meaningful lives. Nixon vetoed the 1973 Rehabilitation Act twice noting the law (and lawmakers who championed it) was fiscally irresponsible. Throughout the 1940s, 50s, and 60s, policies reflected an intense desire to help people with disabilities help themselves. This was the policy image for disability espoused and governed by a close-knit policy monopoly that endured for decades (Pettinicchio 2013; 2019). Members of this policy field clearly recognized a social problem of economic marginalization which at least in part was structural and not based on individual failings. Policies like the 1944 GI Bill, the 1954 Vocational Rehabilitation Act (an extension of the 1920 law), the Maternal and Child Health and Mental Retardation Planning Bill of 1963, the Urban Mass Transportation Act of the following year, and by the end of the decade the 1967 Social Security Act Amendments, and the reauthorization of the Vocational Rehabilitation Act reflected work that incrementally sought structural change. In addition to these endogenous efforts, new, more external, institutional opportunities emerged throughout the 1960s that supported both growth in disability policy as well as new lenses through which to view policy. They also included expanding roles among administrative agencies including the Rehabilitation Services Administration (RSA) and Health, Education and Welfare (HEW) which would later house the Office of Civil Rights (OCR). They, along with policymakers in Congress forged close ties with leading disability groups of the time like the National Federation of the Blind, Paralyzed Veterans of America, Easter Seals, National Society for Crippled Children and Adults, National Association of the Physically Handicapped, National Association for Retarded Children, United Cerebral Palsy, and the National Association for the Deaf. Together, rehabilitationists built tremendous consensus about what it means to be a person with a disability in the United States, what this means vis-à-vis policy, and what this means for “solutions” in dealing with the “problem” of disability. They faced few internal or external challenges. Nevertheless, important changes within and outside this field shifted the policy image away from the notion that “disabled people accommodate society rather than society accommodate them” (O’Brien, 2001, p. 5) or as Scotch (2001) put it, “from goodwill to civil rights.” These policy actors – legislators, administrators, and non-profit organizational leaders – were setting the stage for civil rights to enter the policy agenda in the 1970s.

SEPARATE-AND-UNEQUAL PARALLEL SYSTEM OF RIGHTS Disability always had a place on the policy agenda. It is an especially relevant example of how paradigms about accepted ways of doing things become punctuated with new ideas and

Tracing welfare–rights connection in American disability policymaking  349 directions – not necessarily a total paradigm shift but reconfiguring and expanding extant ones. It also helped that new more rights-oriented policymakers joined the fray and that while they did not reject rehabilitation (in fact they saw it as a necessary part of integrating people with disabilities into the mainstream), the monopoly over a strict rehabilitation focus began to expand to include one of rights and antidiscrimination. To this policy community, these two goals were congruent and complementary. It is here that welfare–rights and client–citizen models really came to fruition and continue to color disability policy issues today – homecare being one of many. New political and, more specifically, policymaking opportunities presented themselves in the mid-to-late 1960s that would take American disability social policy once again in a new direction as it had in the 1920s. In 1968, Congress relatively quickly and with little debate enacted the Architectural Barriers Act which required newly constructed public buildings to be accessible. While limited in scope, it was nonetheless the first major legislation that alluded to removing barriers to participation rather than adapting people with disabilities to deal with those barriers (the latter often being the case with rehabilitation policy). During the late 1960s, policymakers continued asking for more money for vocational rehabilitation. This was becoming more challenging with the growing backlash against LBJ’s Great Society that would eventually usher in Richard Nixon’s presidency. The increasing connection between civil rights and social welfare for people with disabilities would lead to an opposition to both based on their perceived high costs and inefficiencies in implementation. Political opportunities in Congress to enact major social policy were contracting and more liberal members of Congress were aware of that. Still, Sen. Hubert Humphrey and Rep. Charles Vanik in 1971 proposed an amendment to the 1964 Civil Rights Act that would make disability-based discrimination illegal. The amendment failed. It seemed there was little political will to re-open the Civil Rights Act (Pettinicchio 2019). In 1972, the newly created Senate Subcommittee on the Handicapped quickly became an important venue for promoting disability rights and antidiscrimination. When the Vocational Rehabilitation Act was up for renewal, members of the committee who had become disability rights entrepreneurs ensured that a rights and antidiscrimination section was included in the 1973 Rehabilitation Act. Robert Humphreys, Senator Jennings Randolph’s aide, claimed that Section 504 was “essentially self-generated on the part of staff of the [Labor and Public Welfare] committee” (Scotch 2001, p. 57). Much of this work occurred behind the scenes. It is also noteworthy and somewhat unusual for the time that a social welfare bill would include language of rights and antidiscrimination – a literal version of the language originally proposed in Humphrey and Vanik’s 1971 Civil Rights Act amendment. Nonetheless, this policy intertwining social welfare with rights and antidiscrimination would become the precursor to the Americans with Disabilities Act of 1990. The early-to-mid-1970s was a pivotal period for disability rights. Legislative momentum came to a head as important rights-oriented laws like the Rehabilitation Act and the 1975 Education for All Handicapped Children Act (later, IDEA) became part of numerous policy landscapes. It showcased political entrepreneurship at its finest. As a staffer commented (in Scotch 2001, p. 47): You have to understand that the 1970s began really the emergence of the Congress as an institution in really initiating substantial amounts of social policy, important social policy. We in the Congress therefore as a matter of self-defence and as a matter of Democratic Party politics felt that it was important to take the initiative because otherwise the initiative would not be taken elsewhere.

350  Research handbook on disability policy The same staffer went on to say that Senate staffers were “the Martin Luther Kings of the disability movements on Capitol Hill and in the government.” As Patterson (2000, p. 182) explained, “HEW was a liberal bureaucracy with every reason to aggrandize itself.” Indeed, the OCR within HEW played a critical role in interpreting and expanding the rights provisions of the Rehabilitation Act. At the same time, legislative staffers and executive branch members also formed close relationships with the nascent disability rights movement. Judy Heumann, founder of one of the first modern cross-disability protest groups, Disabled in Action (see Barnartt & Scotch 2001), interned for Senate staffers. The organizational basis of the modern disability rights movement, these groups would become crucial in calling out backstepping and cuts to disability services and to rights. Among the first major disruptive protests were those organized against Nixon’s vetoing of the Rehabilitation Act. The growing movement turned its focus to the lack of regulations and intra-administrative agency conflicts that stalled the implementation of Section 504 provisions – a delay of nearly four years. Regulations were signed but the fight had only just begun. Growing opposition to expanding social policy and a conservative turn which led to the Reagan 1980s put a damper on the enforcement and implementation of disability rights laws. The Reagan administration showed little interest in enforcing Section 504 provisions, and courts interpreted disability rights laws very narrowly. Throughout the 1980s, laws continued to focus on both rights and social welfare as they had for decades. Indeed, the second half of the 1980s is often characterized as a golden age of disability legislation. Pushing back against the Reagan administration, disability activists and organizations worked with lawmakers forging new ties and reinvigorating existing ones that would later help sell the ADA (Pelka 2012). The 1986 Air Carrier Access Act prohibited air carriers from discriminating against disabled travelers. The following year, the Developmental Disabilities Assistance and Bill of Rights Act Amendments were passed. The bill, supported by groups like United Cerebral Palsy, the Epilepsy Foundation, and the Consortium for Citizens with Disabilities, marked a shift towards a stronger focus on consumer empowerment in the provision of medical services. Growing efforts in the broader civil rights community sought to “restore” civil rights throughout the decade and the Bush administration’s plan to set itself apart from its predecessor, at the very least, signaled a much less antagonistic stance on the rights issue. It was within this context that the proposed ADA of 1988 came to be seen as the second most important civil rights law, second only to the 1964 Civil Rights Act. The ADA extended the provisions of Section 504 to the private sector. In doing so, it brought new policy stakeholders into the fold, many of whom, along with conservative lawmakers, challenged the very basis of the ADA. Conversely, supporters pointed to poor enforcement of the Rehabilitation Act and troubling court cases setting the rights agenda back. Eventually, through a series of legislative compromises, conservative policymakers came on board and Bush championed the proposed law. The ADA is heralded as having wide bipartisan support. However, the years following the ADA were again riddled with setbacks as courts continued to rule narrowly on disability rights. Employment outcomes, one of the main areas the ADA sought to address and still seen as the chief mechanism to independence, saw little signs of improvement (Maroto and Pettinicchio 2014). The situation seemed so problematic that Congress had to again “restore” the ADA in 2008 with the ADA Amendments Act.

Tracing welfare–rights connection in American disability policymaking  351 The disability struggle highlights both a political and a structural problem. Marta Russell (2002) has written extensively on the relationship between capitalist systems and unemployment. Viewing disability employment through a Marxist lens, Russell highlights that permanent unemployment is necessary in capitalist systems because a surplus of labor is needed to maintain low wages, and disabled people in part help satisfy that requirement. This has important implications for understanding disability policy. Disability rights policy in the US, to use Russell’s language, is one of free market civil rights where policies are made more palatable by framing them as a way to get people with disabilities off government supports – but these policies were never meant to actually challenge the status quo. The Rehabilitation Act and, later, the ADA represent a melding of social welfare provisions with rights and antidiscrimination, setting a particular path-dependent trajectory for disability rights in the United States – one that activists early on recognized as a separate-and-unequal parallel system of rights. The long-time trend of economic marginalization and exclusion among people with disabilities, despite laws and political movements seeking to mitigate these, raises broader, more systemic-based questions. The concern is not that these trends are aberrations of the system but rather, that they have become normative. They are the system. Returning to homecare, it is an issue that despite legislative tools and years of periodic interest on the policy agenda it remains unsettled. Acknowledging that people with disabilities are not getting the public goods promised by policy, attempts at reform have not gone far enough. Not only are lawmakers working within an entrenched welfare–rights model which has been both empowering and limiting, but policy efforts are plagued with compromise and lack of political will to upset the status quo.

GAINING THEORETICAL INSIGHTS The development of disability social and rights policies point to several broader, more generalizable, aspects of the political process. At a minimum, they can be identified across other policy areas and issue mobilization in the United States, but they can also reveal more general understandings about politics, policymaking, and mobilization across democratic regimes. The disability welfare–rights connection showcases how policy evolves incrementally and in punctuated forms, merging extant policy frameworks while highlighting the cyclical rather than recursive nature of policymaking and citizen mobilization. Intervening in this relationship is policy retrenchment – something well documented by sociologists and political scientists studying social policy and the welfare state (Pierson 1994; Hacker 2005). It is a cycle of innovation and backstepping (Pettinicchio 2019) that can play out over decades as issues remain unresolved. Below, I outline four theoretical take-aways. Agenda Setting, Policy, and the Limits of Political Entrepreneurship The rise of a disability welfare–rights paradigm offers an important example of a shifting policy agenda generating new political opportunities for citizen engagement, and an expanded network of more rights-oriented political entrepreneurs who led political discourse away from a strict social welfare paradigm of disability to one that included rights. With access to political resources, these elites worked to effect change within government and, as such, behaved like institutional activists (Tilly 1978; Pierson 1994; Santoro and McGuire 1997; Pettinicchio 2012).

352  Research handbook on disability policy At the macro level, the disability policy agenda expanded as new opportunities exploited by these entrepreneurs led to a punctuation in the 1970s in what was previously a low but consistent government interest in disability governed by a monopoly of rehabilitationists. The agenda did not just expand, it was fundamentally transformed as they reframed disability not only as a welfare issue, but as a matter of minority rights (Skrentny 2002; Steensland 2008). Relatedly, the creation of congressional venues as well as re-focused federal agencies around disability rights helped to maintain – to institutionalize – disability rights as a policy project and not just a political or ideological one. The interplay between the broader institutional and organizational field within which policymakers are embedded including other interest groups, social movement and citizen groups, sheds light on expanding and constraining opportunities for change (Fligstein and McAdam 2012; Lawrence & Suddaby 2006). As Pettinicchio (2013, p. 81) described, these strategic action fields “draw attention to the ways in which actors within organizations intersect with other actors in other organizations, thereby creating a field or context which helps to shed light on the reproduction of social order as well as the production of social change.” They form a less rigid, more Velcro-like (McCarthy 2005) policy community whose members, whether policymakers or citizen groups, can come in and out of a policy community. Both institutional and cultural changes in the 1960s and 1970s saw an expansion in the American welfare state as well as an activist government seeking to extend both social welfare provisions and civil rights to marginalized communities (Skrentny 2002; Birkland 2010; Mettler 2007). Not only did this have important impacts on the policy agenda and policy itself, but it also created new political constituencies. This would later be critical as political entrepreneurs reached their limits in how much change they could bring about within government. Political entrepreneurs no doubt play a key role in different aspects of political change from generating new political opportunities (Costain 1992; Katzmann 1986) to maintaining interest (Santoro and McGuire 1997; Banaszak 2010). However, they also come to rely on “outsiders” to put political pressure on detractors – an important way to ensure policy entrenchment (Pettinicchio 2012). In the late 1970s, when Section 504 regulations were still not signed and put in effect, members of Congress and the administration encouraged protesters to hold sit-ins at federal offices. When momentum around the ADA seemed like it was stalling, President George H.W. Bush urged protesters to continue their fight against opponents. Nonetheless, policymakers are also interested in ensuring that the policies they back and expend political resources and capital on get passed. This often leads to compromise. In addition to compromise, policies are also susceptible to downstream reversals (Patashnik and Zelizer 2013) when they are seen as lacking legitimacy by policy stakeholders who, persuaded by compromise, begrudgingly went along with them. This is especially problematic with weak mechanisms preventing policy entrenchment including proactive monitoring and enforcement bodies and other factors attenuating positive policy feedback. As Pettinicchio (2019, p. 164) explains, in the case of disability policy, “political entrepreneurs may not have done enough, for a variety of institutional, ideological, and professional reasons, to ‘stack the deck’ by embedding their policies in enduring structures, particularly rule making and enforcement, so that policies withstand erosive elements.” Was the result, as Bruce Vento (D-MN) testified 20 years following his fellow Minnesotan Hubert Humphrey’s disability rights efforts, a “vague and imperfect imitation of the rights we take for granted—the right to work, the right to communicate, the right to live in the community— without fear of discrimination?” Or is it that the kinds of incremental insti-

Tracing welfare–rights connection in American disability policymaking  353 tutional changes political entrepreneurs sought were, as Russell might argue, simply not enough to address a far more entrenched ableist system perpetuating inequality? The specific American civil rights structural and cultural landscape informed how policymakers sought to empower people with disabilities. The disability rights movement and disability organizations also drew parallels with the broader civil rights community and civil rights legislation, helping to cast people with disabilities as a citizen group entitled to civil rights. In other words, all key players whether institutional or so-called outsiders were imbued in the same logic of civil rights. On the one hand, they were pioneering a pathway to rights well before a more robust global conversation about human rights was taking place. On the other hand, any power a global human rights paradigm and the Convention on the Rights of Persons with Disabilities (which the US did not ratify) might have has been less relevant in informing both policy problems and policy solutions in the US.

BACKLASH AND RETRENCHMENT A challenge for disability rights entrepreneurs was always about convincing others (including naysayers) not to support specific legislation, but rather to support the disability rights project further down the road. At the heart of the matter is whether elites and everyday people recognize disability-based discrimination (Maroto and Pettinicchio 2015; Maroto, Pettinicchio, and Patterson 2019; Pettinicchio and Maroto 2020) or whether discrimination is rationalized based on (faulty) assumptions that people with disabilities cannot be economically productive, lending themselves to a “justifiable” denial of employment, for example. Despite a legacy of disability rights and antidiscrimination policies, the notion that these policies are just a form of redistribution – unfairly taking from others to help a few – “special efforts” that create burdens on others – can make policies more susceptible to backstepping and retrenchment. These are in fact the perennial arguments leveraged by detractors that policies like the ADA are just inefficient, costly, and do not actually work. Retrenchment efforts date back to the stalling of regulations following the enactment of Section 504 of the Rehabilitation Act. Public transit and public education sectors – those most immediately affected by the law – protested its application and enforcement in their respective arenas. Their opposition would later be echoed by those challenging the ADA and the ADA Amendments Act. Detractors worried about the ADA’s “horrors”; that it went well beyond what Congress outlined in the 1973 Rehabilitation Act, that “everyone is disabled,” and that it would create a litigation regime (Pettinicchio 2019). Special education and mainstreaming continue to be framed as expensive and inefficient programs for a relative few that detract from effective learning for the many, evidenced by the many failed attempts to address backstepping on the Individuals with Disabilities Education Act (IDEA). Non-compliance in the transportation industry continues to plague that policy area, and perennial debates about inclusion versus a separate-but-(un)equal paratransit system rage on. Incremental efforts continue to undermine disability policy in recent years. In 2017, the ADA Education and Reform Act proposed relaxing requirements for businesses to provide reasonable accommodations for people with disabilities. The Trump administration also weakened enforcement of the ADA’s accessibility requirements for medical equipment, websites, and public accommodations. At the same time, the courts continued to show a less than sympathetic position in the disability rights policy struggle. With Magee v. Coca-Cola (2017),

354  Research handbook on disability policy the Supreme Court decided against hearing this case involving inaccessible vending machines. The Trump administration, along with Coca-Cola, had apparently urged the court not to hear the case. The Court also declined to hear an appeal in N. E. v. Seattle School District regarding the IDEA “stay put” rule. This rule allows students to remain in a regular classroom while disputes between parents and school administrators about placement into a self-contained classroom are resolved. Disability policy – the intertwining of rights and social welfare which intersects with wide-ranging policy domains from health and education to transportation and labor – does not reflect a linear evolution from a client-service approach to a rights-based approach nor a direct path to “progress.” Rather, it embodies a multi-paradigmatic policy approach with several large steps forward and many small steps backwards. The ADA did not put to rest the issue of disability across these policy domains. In some cases, it further bifurcated these fields with area-specific policy conversations in one stream, and disability in the other, because of both institutional and attitudinal barriers to more holistic and integrated policy understandings. The homecare issue is a case in point. Half-solutions In the period following the ADA, activists, policymakers, and scholars drew focus on disappointing outcomes especially when it came to employment. While detractors pointed to the unintended harms of well-intentioned legislation in creating distinctives among employers for hiring people with disabilities (including threat of litigation), supporters argued that the ADA had the bite taken out through compromise and weak enforcement (Maroto and Pettinicchio 2014). Both camps have described, to some extent, policy failures, albeit under different premises. But another way to think about the ADA and indeed disability rights policy more generally is whether they reflect policy half-solutions. As Campbell (2011, p. 969) explained: We often get partial solutions because they are politically feasible—how many times has a lawmaker said a piece of legislation “isn’t perfect but we’ll fix it later”—but the act of having done something to address a problem undermines mobilization around the issue and results in the political agenda moving on to other pressing needs.

The origins of disability rights and antidiscrimination policy itself reflected a grand compromise. It would be a section of a social welfare bill and not a status covered under the 1964 Civil Rights Act that established rights for people with disabilities. Subsequently, policies like the ADA also reflected significant legislative compromises which is in part why it garnered bipartisan support. Policymakers wanted to get policies enacted and settled on approaches leaving open possible subsequent amendments and future developments. The problem, however, is that these future developments can also include backstepping. This is especially the case when robust efforts to undermine and constrain policy are present, as was the case with disability given the cycle of innovation and retrenchment, and a political system with many veto points including Congress, the courts, and the executive branch. These can interfere with institutionalizing policy, leaving an unsettled field unprotected from retrenchment efforts. Often, as part of positive policy feedback or lock-in effects, everyday citizens – political constituencies – play a role in defending policies from cutbacks (Pierson 1994). Yet, Campbell’s (2003) discussion of so-called “upward policy trajectories” also alludes to an important phenomenon of interest to social movement scholars and political sociologists

Tracing welfare–rights connection in American disability policymaking  355 which is the way political elites co-opt movement issues through policy. The concern, especially when policies are half-solutions, is that they signal the achievement of mobilization inside and outside of government while “closing” a political cycle. But half-solutions still leave a lot up in the air which requires systematic monitoring and concerted political efforts on the part of citizen groups. In the case of disability, the period following the ADA saw an overall contraction in political opportunities for disability policy as well as a contraction in the disability non-profit organizational sector and a decline in protest – from disruptive direct action to lobbying activities (Pettinicchio 2019). All the while, the ADA was seen as failed policy especially when it came to improving the economic lives of Americans with disabilities (Maroto and Pettinicchio 2014). Citizen Mobilization Through a well-established voluntary sector, the disability community, albeit unevenly and in many cases very narrowly, has had representation among elites working on disability-related policies, broadly defined. Groups like the Muscular Dystrophy Association, March of Dimes, National Society of Crippled Children, and the Easter Seals (see Longmore 2003) were largely interested in service provision complementing the policy image of the time (see Skocpol 2007). These were successful groups that gained political legitimacy and wielded resources and, as a successful organizational strategy, isomorphic processes led to a field that looked homogenous (DiMaggio and Powell 1983). As Scotch (2001, p. 34) claims, although existing disability organizations “had varying degrees of political involvement none was oriented toward the general issue of civil rights for all disabled people.” It therefore also makes sense that the kinds of institutional changes outlined in this chapter including the meshing of social service provision and civil rights shaped how the disability organizational field adapted. Not surprisingly by the time the ADA was enacted, one of the more dominant organizational forms was a flexible hybrid service-advocacy group (Minkoff 2002; Staggenborg 1988) – the result of existing groups adapting and new organizations entering the field. A lot of this change occurred in the mid-to-late 1970s and into the 1980s, some of the reasons being exogenous to the disability policy field. It was a period where many policy areas saw an explosion of interest and important transformations among respective consistencies. The number of women’s advocacy groups expanded (Costain 1992; Minkoff 1995; Soule, McAdam, McCarthy, & Su 1999). Likewise, a proliferation of large professional environmental advocacy groups and a spike in protest activity followed the Clean Air Act and establishment of the Environmental Protection Agency in the 1970s (Olzak & Soule 2009; Johnson 2008). In the early 1970s, the National Center for Law and the Handicapped, Disabled in Action, and the National Alliance of Blind Students and Rainbow Alliance of the Deaf were formed, and later in that decade the Disability Rights Center came onto the scene. In the 1980s, the more militant group ADAPT became synonymous with public transit-related protests in that decade. The group would later change its focus to attendant and community-based care targeting the nursing home industry. But even established service provision organizations incorporated a more political advocacy component to their core strategy including Parents of Down Syndrome Children and Easter Seals. Within this context, two important factors helped shape the burgeoning disability rights movement in the early 1970s. The first was the role of political entrepreneurs and new political

356  Research handbook on disability policy opportunities that brought about rights-based language in policy. This has important implications when theorizing about the social movement–policy connection for a while traditional accounts have conceptualized changes in policy as an outcome of mobilization, policy can also generate citizen mobilization (Baumgartner and Mahoney 2005; Meyer 2005; Baumgartner and Jones 2002; Sheingate 2006; Johnson, Agnone, & McCarthy 2010; King, Bentele, & Soule 2007; Olzak and Soule 2009). The other, as outlined earlier, was the ensuing backlash, retrenchment, and sense that the government broke its promise to citizens with disabilities. As one Disability Rights and Education Defense Fund leader explained, retrenchment efforts led by the Reagan administration in the 1980s mobilized grassroots activists along with institutional activists and organizations, ironically generating momentum leading to the ADA (Pettinicchio 2019). Indeed, close ties with elites did not preclude organizations from challenging them, policy, or the status quo. The development of disability policy illustrates the connection between policymakers, institutions, formal organizations, and citizen political action. It points to non-recursive relationships between so-called insiders and outsiders and that, sometimes, policy is not the outcome of demand on the part of mobilization but, rather, policy and politics supply tools and motivations for citizen engagement (Meyer 2005; Pettinicchio 2012; 2017).

CONCLUSION Disability policymaking in the United States reflects an evolution rather than a revolution. Federal disability policy began as a branch of the liberal American welfare state. Government action took place when “the deserving” could be better integrated into the economic mainstream by adapting them to social norms and conventions. Within this framework, and unsurprising to scholars of the American welfare state, efforts were piecemeal; one policy extending or expanding the prior over a span of decades. This, however, does not mean that norms and conventions always went unchallenged, or that frames and understandings about disability were so locked-in that legislators and disability organizations could not see beyond the focus on social welfare. Quite the contrary. One of the successes of this incremental shift was that it carved a particular pathway for rights-focused policy to emerge when the policy agenda was punctuated with a burst of interest in extending minority rights to marginalized groups. This was but one pathway – one where rights were intricately linked to social welfare from the very start. Whether or not civil rights for people with disabilities were supposed to challenge, parallel, or supplant the extant client-service and social welfare paradigm, it would be incorrect to claim that the Rehabilitation Act, IDEA, and the ADA reflected a total paradigm shift or replaced an existing client-service policy model. It would also be wrong to assume that, because it did not, these laws did not build upon the truly important notion that people with disabilities face social, political, and economic barriers not only because they lack access to rehabilitation and other social and health-related services, but because they face discriminatory attitudes and practices. Indeed, lacking access to vocational rehabilitation, health care, and homecare is itself the result of systemic discrimination, ableist systems, and structural and cognitive barriers that can only be addressed through civil rights and antidiscrimination laws. But these policies were ultimately built on top of what was, and they did not replace (some might argue they did not even significantly challenge) the long history of policies built on the notion that people with disabilities need to adapt to an ableist environment.

Tracing welfare–rights connection in American disability policymaking  357 Perhaps enmeshing rights and social welfare makes sense since many of the pressing issues facing the disability community inherently lie at their intersection. One need only look to the hybrid service-advocacy organizational forms that historically represented the interests of people with disabilities and their usefulness in challenging inequality through multipronged ways. In the early political movement around Medicaid and homecare of the 1980s and 90s, these organizations mobilized the disability community to challenge “the big hole in our civil rights laws.”3 The issue of Medicaid and homecare, which this chapter began with, is a good example of periodic steps over the years to mobilize disability rights by addressing a social welfare and health-related policy domain yet resulting in little meaningful change. Throughout the 1990s, Congress sought to do something about the nursing home bias in Medicaid. The Clinton administration ultimately left the issue up to states and the George W. Bush administration did not really take on Medicaid reform. In the last decade, President Obama supported the Democratic-sponsored Community Choice Act (which ironically looked a lot like the Republican Newt Gingrich proposal of the 1990s) but in efforts to get the Affordable Care Act passed, homecare was compromised out of so-called Obamacare. In short, the persistent gap between fundamental rights to live free of residential care facilities and existing social welfare and health care policies represents a 40-year-old bipartisan failure.4 Recent Medicare for All proposals including the original Bernie Sanders draft of 2017 largely ignored the issue of homecare. Many others, including Senator Corey Booker, supported lowering financial eligibility requirements so more individuals could benefit from homecare plans that look much like existing Medicaid. That same year, Democrats sought to pass the Disability Integration Act which would have made it illegal for private insurers who failed to provide, where possible, community-based long-term care supports. The bill died in committee. Senator Chuck Schumer, its primary sponsor, re-introduced the bill in January 2019. The bill would specifically require “government entities and insurance providers to offer community-based long-term services to individuals with such disabilities who would otherwise qualify for institutional placement. Government entities must ensure sufficient availability of affordable, accessible, and integrated housing that is not a disability-specific residential setting or a setting where services are tied to tenancy.” Again, the bill did not go to vote. In April 2021, framed as part of post-COVID-19 infrastructure spending, President Biden announced a 400-billion-dollar plan over the course of eight years to provide necessary supports to ensure that Americans with disabilities can live freely and independently. While this will likely be a tough sell for Republicans who do not view this as “real infrastructure spending,” those working in the field criticize the plan for being ambiguous as well as not guaranteeing universal access to community-based care by leaving many middle-income people out.5 We continue to live in unsettled times and the pandemic has only made that ever more evident (Pettinicchio, Maroto, & Lukk 2021; Maroto, Pettinicchio, & Lukk 2021; Pettinicchio, Maroto, Chai, & Lukk 2021). Now more than ever, the social problems emerging out of the pandemic have made the symbiotic connection between social welfare and civil rights critical in informing pandemic policy countermeasures, addressing inequality and disadvantage among an already historically marginalized community.

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NOTES 1. 2. 3. 4. 5.

Start of endnote. See https:// www .forbes .com/ sites/ sarahkim/ 2019/ 03/ 19/ nyc -cdpa -rally/ ?sh = 2b105ff52183 and https:// www .lohud .com/ story/ opinion/ perspective/ 2019/ 01/ 29/ new -york -may -cut-program-lets-people-disabilities-hire-aides/2665922002/. End of endnote. Start of endnote. Congressional Record, Special Education and Rehabilitation, Part 7, 1736. End of endnote. Start of endnote. See Pettinicchio, D. 2019, Why disabled Americans remain second-class citizens, Washington Post. https:// www .washingtonpost .com/ outlook/ 2019/ 07/ 23/ why -disabled -americans -remain-second-class-citizens/. End of endnote. Start of endnote. Pettinicchio, D. n.d., American prospect. https:// prospect .org/ health/ bipartisan -failure-address-long-term-home-based-care-disabled-americans/. End of endnote. Start of endnote. See https:// www .npr .org/ sections/ health -shots/ 2021/ 04/ 09/ 985567929/ whats -in -bidens-400-billion-plan-to-support-families-long-term-health-needs. End of endnote.

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30. Questioning the dominant welfare discourse on personalization and autonomy embodied in personal budget policy Toon Benoot and Rudi Roose

INTRODUCTION Traditionally, European welfare state delivery of social care for people with disabilities tended to mainly consist of services in an institutionalized setting. Walmsley (2005, p. 51) points to two main ideas that made people think institutions were good places for people to live in. The first was “the idea that people with intellectual disabilities were dangerous and caused problems for society”. Second, it was thought that people with intellectual disabilities “should be looked after and cared for in ways that would enable them to live happy lives”. Today, we think it is important for people with intellectual disabilities to live in the community rather than in institutions, which are considered mistakes of the past. It is in this vein that personalization has become a key element of social work policy, philosophy and even legislation (Ferguson, 2007). Since the 1990s, modern welfare states have focused on the personalization of care and support, shifting from traditional care provided in care services with a residential character to more individualized care in de-institutionalized settings. Citizen choice has been at the heart of many policy reforms in industrialized welfare states, which, inspired by New Public Management, have introduced markets and competition as tools to increase the efficiency and effectiveness of a variety of public services (Dursin et al., 2021). The promotion and centralization of choice and control for people with disabilities was also amplified by the UN Convention on the Rights of Persons with Disabilities (United Nations, 2006) since the Ratifying Member States must take effective and appropriate measures to enable people with disabilities to exercise their rights. Organizations representing the interests of people with disabilities were often the ones to put the UNCRPD’s rights framework on the policy agenda (Harpur, 2012). For example, organizations like In Control in England and Per Saldo in the Netherlands have consistently advocated for self-directed support and person-centeredness. In partnership with governments, the advocacy groups have been able to use the UNCRPD as a framework for the development of a more socially just care landscape, i.e. the provision of more personalized care separate from traditional social care, within the context of a choice of market opportunities (Lymbery, 2012). These dynamics have led to the introduction of personal budget policies, in which particular attention is paid to Article 19 of the UN Convention. Article 19 stipulates that all people with disabilities, regardless of the type or severity of the disability or the level of support necessary, have the right to live in the community, with choices equal to those of others (United Nations, 2006). The Committee on the Rights of Persons with Disabilities (2017) formulated the General Comment no. 5 on Article 19: Independent Living and Inclusion in the Community, which refers to personalization in paragraph 63 as follows: 361

362  Research handbook on disability policy Support for persons with disabilities should be assessed, through a personalized approach, and tailored to the specific activities and actual barriers that persons with disabilities face in being included in the community. The assessment should acknowledge that persons with disabilities require access to participate in activities that are varying over time. States parties should ensure that personalization of support, including cash transfers/personal budgets, take into account and address the challenges that persons with disabilities face when living in rural and/or urban areas.

Personal budget policies for people with disabilities have been the most explicit form of conceptualizing personalization and choice in social policy as they (a) provide a personalized budget based on an individual assessment, (b) can be controlled by the person and her/his network to purchase services (rather than block-funded care providers), and thus (c) hold the promise of tailoring care to meet the specific needs of individuals (Arksey and Baxter, 2012). These policies have been established in different welfare states with a large variation in their actual implementation (Benoot et al., 2018). Administrations in liberal welfare regimes have a tradition of being more market-oriented in their approach to benefits and services. But personal budget policies have also been introduced in social democratic nations such as Finland and Sweden, as well as in more conservative welfare states such as Austria and Germany and countries with liberal welfare regimes such as Canada, Australia and the UK (Arksey and Baxter, 2012), resulting in a wide range of applications.

COMMITTED TO A TWOFOLD TASK In the context of these policies “social services are designed to fit their users, instead of users having to adapt to the services interests and decisions of service providers in this traditional care” (Mladenov et al., 2015, p. 308). With a focus on aspects of social change and emancipation, personalization is considered to result in a society that is fairer and more just (Payne, 2006). A twofold task for social work professionals is set out in personal budgets, namely, to foster individual well-being and to contribute to social justice. This twofold task of contributing to individual well-being and to a socially just way of care delivery is believed to be achieved through the interplay of the personalization agenda with elements of marketization. Market principles should boost the promotion of the freedom and independence of people with disabilities through relocating welfare resources from institutionalized and professionalized care to “self-driven consumers who sovereignly wield the power to buy” (Mladenov, 2012, p. 251). Financed by grants or vouchers, citizens are enabled to purchase services in the marketplace and are being compelled to choose between different providers to drive competition. This is expected to result in more efficient and effective services with a lower cost (Mladenov et al., 2015). Or as Priestley and colleagues (2006, p. 1190) put it aptly: “Placing financial resources under the control of disabled people … challenges traditional assumptions about power and dependency and redefines purchaser–provider–user relationships.” Notwithstanding the centrality of social change and the promise to contribute to social justice in the conceptualization of personalization, research has shown that the implementation of personal budget policies can become deeply individualistic (Ferguson, 2007). Lymbery (2012, p. 790) points to “the extent to which policy has become inseparable from neo-liberal notions of consumerism and individualization” as “deeply troubling” for care practice, as this is far removed from “the transforming rhetoric with which it was introduced”. Personal budgets have been criticized for becoming practices which encourage a particular idea of

Questioning the dominant welfare discourse in personal budget policy  363 empowerment as a private responsibility and which propagates an idea of autonomy in terms of consumerism and rationality (Ferguson, 2007; Lymbery, 2012; Roets et al., 2020). These evolutions are considered to be problematic for the potential of developing a care practice that is concerned with social justice. In what follows we present an example of the translation of the UNCRPD into regulations that guide the practice of care and support for people with disabilities. This chapter does so by focusing on the Flemish personal budget policy ‘Persoonsvolgende Financiering’ for adults with disabilities. This setting is relevant as at the beginning of 2017, this personalized funding mechanism was introduced for all adults with disabilities in Flanders, representing a significant shift towards a new disability policy that embraces user choice and hence transfers new responsibilities towards clients. At its core is a new funding model in which care providers are no longer directly subsidized by the government. Instead, people with disabilities receive a personal budget based on identified support needs, which they can spend themselves according to the support of their choice. This policy embraces the ideas of personalization and marketization, both of which are seen as drivers of realizing a socially just care and support practice.

CASE OF THE FLEMISH PERSONAL BUDGET POLICY: ‘PERSOONSVOLGENDE FINANCIERING’ The decree that regulates ‘Persoonsvolgende Financiering’ (PVF) (see Department of Welfare, Public Health and Family Affairs, 2013) is based on two concept notes of the Flemish government: (1) the long-term vision entitled ‘Perspective 2020 – a new support policy for people with disabilities’ (Department of Welfare, Public Health and Family Affairs, 2010) and (2) the concept note concerning direct payments for people with disabilities (Department of Welfare, Public Health and Family Affairs, 2013). In 2010, the long-term vision for the support policy for people with disabilities had been outlined by the Flemish government. This document, referred to as ‘Perspective 2020’, was explicitly concerned with the citizenship and rights of disabled people (Department of Welfare, Public Health and Family Affairs, 2010). The vision seeks to apply the basic principles of the UN Convention on the Rights of Persons with Disabilities, which was ratified and implemented in Belgium in August 2009, within the Flemish policy context. Perspective 2020 argues that this ratification demonstrates the intention of the Belgian and Flemish governments to actively realize the rights of people with disabilities, as “the Convention intends to enable disabled people to enjoy the full realization of their rights while treating them on equal terms by encouraging the authorized states … to create appropriate environments and measures” (Department of Welfare, Public Health and Family Affairs, 2010, p. 3, our translation). At the heart of this White Paper is the promise to enable people with disabilities to become well-informed users in a demand-driven care and support landscape. This concept paper intended that the care innovation for people with disabilities would be well underway by 2020. Although Perspective 2020 is currently at the end of its life cycle in Flanders, the key policy components are to remain in the next policy plan of the Flemish government for 2020–2025 (Roets et al., 2020). The second concept note on ‘direct payments for people with disabilities’ (Department of Welfare, Public Health and Family Affairs, 2013) builds on a few points from the White Paper

364  Research handbook on disability policy and is a more concrete expression of what the new funding policy was intended to look like. It included concrete proposals on how to implement and guarantee central elements, such as ‘demand-driven care’, as well as the introduction of a separate basic support budget for directly accessible support and personal financing budget for support that is not directly accessible. The PVF decree was approved by the Flemish Parliament on April 23, 2014, and gives every person with a disability the right to organize his or her support themselves. The Flemish personal budget policy is believed to increase the opportunities to change care and support arrangements when deemed desirable by the ‘client’ (Dursin et al., 2021). The rationale is that, in line with private consumer markets, if suppliers do not respond to the demands of the citizens, they can take their business elsewhere. Hence, the outcome of this dynamic is believed to be more efficient, and the choice is expected to function as an important mechanism to increase service quality by means of individual purchasing decisions. Four fundamental objectives emerge from the two concept notes and form part of the basis of the final decree. First, the Flemish government aims to guarantee care and support for people with disabilities in the most urgent need of support (Department of Welfare, Public Health and Family Affairs, 2010). Second, (potential) users need to be well informed to be able to apply for and receive the necessary care and support. A third goal of PVF is to realize tailor-made care and support for users. This implies a certain flexibility that should enable people with disabilities and their families to always tailor their care and support to their specific needs and situation. Finally, the Flemish government aims at care and support for people with disabilities that enables their full participation in society, with an emphasis on inclusion and “vermaatschappelijking van de zorg”. The latter is a catch-all concept that is difficult to translate, but conveys a similar idea to a ‘Big Society’ in the UK and a ‘participation society’ that has been formally introduced and implemented in the Netherlands. These four objectives reflect a commitment both to achieve the individual well-being of every person with disabilities and to establish flexible and inclusive care and support practices as an expression of the pursuit of social justice.

FLEMISH POLICY FRAMEWORK: A HUMANIST INTERPRETATION OF AUTONOMY The Flemish ‘Persoonsvolgende financiering’, in line with the personal budget policies in other European countries, is intended as an ‘empowering policy’ (Department of Welfare, Public Health and Family Affairs, 2010, 2013). This is in the sense that it aims, through the redistribution of public means from formerly subsidized care institutions to the people with care needs, to contribute to a practice where people gain a sense of autonomy and can, or become able to, make choices to actively shape their own life course. The UN Committee’s interpretation of Article 19 of the UNCRPD formulates in Section 8 that Article 19 reflects the diversity of cultural approaches to human living and ensures that its content is not biased towards certain cultural norms and values. “Living independently and being included in the community”, so states the committee, “are concepts of human living across the globe, applied to the context of disability. They mean exercising freedom of choice and control over decisions affecting one’s life with the maximum level of self-determination and interdependence within society.” This implies a strong focus on an ideal of rational autonomy, which exacerbates the

Questioning the dominant welfare discourse in personal budget policy  365 gap in opportunities for people with intellectual disabilities, who a priori do not meet this ideal of self-determination. But where does this emphasis on the rational and autonomous individual in personal budget policy actually stem from? On the one hand, it is an inherent characteristic of the market-based principles that underpin personal budget policies. The ‘demand-driven’ approach is built on the premise of an ability to formulate a specific demand. On the other hand, what Goodley et al. (2014) name ‘the utopian human ideal’ is grounded in the ‘social justice pillar’ of personal budgets. The universality of human rights and of the UNCRPD in particular is grounded in a common understanding of what it is to be human and what a person is entitled to by the very fact of their humanity (Sen, 2004). This notion of what it is to be human “is portrayed as a timeless entity that is based upon appeals to reason and absolute truth” (McKenzie and Macleod, 2012, p. 17). Personal budget policies, as a means of adopting the UNCRPD in policy and practice, imply an understanding of the individual from a humanistic perspective. Humanism, as summarized by Braidotti (2013, p. 29), is hallmarked with the notions of autonomy, responsibility, self-determination, solidarity, community-bonding, social justice and principles of equality. This vision of what it is to be human is above all perceived as a legacy of the enlightenment, embodied in “a rational animal endowed with language” (p. 141). The phenomenon of humanism is found to be problematic, especially due to its claim to universality (Braidotti, 2013; McKenzie and Macleod, 2012). Under such a claim, it minimizes diversity by drawing on what are deemed to be common or universal values. It is in this vein that Stammers (1999) argues for a critical view of human rights that balances the usefulness of an appeal to human rights against a careful consideration of what is being achieved through such an appeal. The rational citizen, presented as a neutral description of the state of the human becomes central to the concept of universal human rights. As a result, questions may be raised for those people who lack the physical and/or intellectual capacities represented by this concept. The inconsistency between many people and this ideal becomes apparent in the definition from the World Health Organization of what it entails to be a person with intellectual disabilities: Intellectual disability means a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development. (World Health Organization, 2020)

The assumption that people with intellectual disabilities are not competent to understand complex information and to cope independently implies that they can only make weak claims to the aforementioned ‘humanist’ and ‘ableist’ norm (see Goodley, 2018) and consequently to these rights. This debate raises questions about how people with intellectual disabilities may be served by a personal budget policy, given that they are categorized specifically in terms of their inability to make informed decisions for themselves (McKenzie and Macleod, 2012). On that note, Brookes et al. (2015) advocate for the funding of voluntary organizations to partner with service users to develop their support plans. These interventions do indeed contribute to making personal budgets more accessible, aiming at including those who do not meet the ideal image of the autonomous consumer-citizen (Roets et al., 2020), and thus contribute to making these systems ‘work for all’. The Flemish policy also attempts to contribute to this objective by recognizing and subsidizing five ‘assistance organizations’. In cases in which it is difficult for a person to clearly formulate a care and support question or to find a suitable service to

366  Research handbook on disability policy meet that specific demand, the individual can choose one of these five organizations to provide assistance throughout the process of applying for and using a personal budget. While we acknowledge the importance of management of access as a way of ensuring equal opportunities to shape the care and support practice for all people, we note that such mechanisms continue to erode the ambiguity and the twofold task that is essential in personal budgets and in social work in general (Roose et al., 2012). In making the system work for all, the social work profession has to become an integral part of the logic of the system and not necessarily critically engage with its position as an intermediary body between ‘the private’ and ‘the public’ (Bouverne-de Bie, 2015) and as an agent of social change. On one hand, putting the person in the center of decision-making about their support is a vital and important step in contributing to a more socially just care practice. On the other, this does not guarantee a joint process of discovering what possible interpretations of autonomy might contribute to the person’s well-being. Nor does it guarantee a way to inform the public on which barriers prevent the person’s well-being from being achieved. Second, putting the person in the center of decision-making reflects the humanist ‘ableist’ ideal of a person who is able to make decisions and to share their views with others. Tonkens (2003) stresses that the focus on the ideal of the articulate/researching citizen as an inherent characteristic of demand-driven care obscures our view of all those people who have difficulty in being articulate and who, above all, need good care and support. This policy of personalization, presented as a policy of inclusion, driven by the dominance of the universality of self-sufficient, autonomous and able citizens, can result in practices that expect people to behave as self-sufficient clients, and when not able to, should support them to do so.

STUDY DESIGN A recently completed research project Autonomy in social work: a search for social justice (Benoot, 2021) examined the impact of the dominant welfare discourse on personalization and autonomy embodied in personal budget policies and how they affect the provision of care and support for people with intellectual disabilities. The data used in this chapter draws on a participatory project with an ethnographic research stance. By means of the participatory research method of photovoice, this study documents the elements of value in the lives of ten people with intellectual disabilities who live in an institutionalized setting and who spend much of their lives there (see Benoot et al., 2020). It is of utmost importance to capture the point of view of the people with disabilities themselves because they have their own stories to tell (Goodley, 1996). We sought to reveal for ten people with intellectual disabilities what ‘autonomy’ and a policy of personal budgets means to them. This raises questions about what the idea of a ‘rational citizen’ means for those people who do not have the expected physical and/or intellectual capacities to make informed decisions that affect the further course of their care and support. Furthermore, the elicitation of the experiences of people with intellectual disabilities in the residential care context provides us with an in-depth understanding of the Flemish personal budget policy in practice. Additionally, we present these experiences in relation to the policy objective to guarantee better quality of care through autonomy and independence, contributing to the knowledge of the meaning of autonomy for people with intellectual disabilities. Based on these rich datasets,

Questioning the dominant welfare discourse in personal budget policy  367 the following analysis offers a different perspective on a humanistic discourse that assumes all citizens are able or willing to make rational choices. A photovoice project was set up as a tool to “facilitate the expression and documentation of the views and needs of people with intellectual disabilities” (see Jurkowski, 2008, p. 3). In providing the participants with a disposable camera with which they could take 39 photos, we offered them the opportunity to visually capture what they deem important regarding their care and support, and their life in general, so as to start conversations on the opportunities that the personal budget offers them (see Benoot et al., 2020). Photovoice, as first developed by Wang and Burris (1997), offers a meaningful way of engaging with people with intellectual disabilities, one that enables the participants to define themselves in terms of the things they most value in their lives (Booth and Booth, 2003). Particularly for these people who have less verbal capacity, this approach offers opportunities to share their ideas and perspectives. From this visual data, we engaged in conversations with people with intellectual disabilities about the meaning of a personal budget in respect to the things they consider valuable. Through bringing the experiences of people with disabilities to the fore, and through relating these experiences to the policy objective of autonomy and independence, we ultimately aim to gain insight into their understandings of autonomy. We did so by applying an ethnographic stance in doing the research. The researcher spent time in the care facility, at times drinking coffee with one participant, on other occasions taking a walk or doing grocery shopping with another participant. The interaction between researcher and participant and the resulting relationship was essential to fully understanding the meaning of the generated data in its social, political and historical context. The photographs taken by the participants could not be understood without this contextual background and without the participants’ narrations about the photographs. Only in the interaction between the researcher, the participants and – eventually – the audience, can meanings come alive (De Wilde, Roets and Vanobbergen, 2019). It is for this reason that our interactive way of shaping and reshaping the ways of doing research in this study is of great importance. For example, the photovoice method worked particularly well for a participant who, in addition to having intellectual disability, also has a degenerative muscular disease. His physical condition makes it very difficult for him to express himself verbally. Taking pictures on the basis of which he could have a conversation was a great help to him. During the conversation about the pictures, it became clear on several occasions that these pictures were also valuable material for communication between him and his personal assistant, with whom he has a particularly strong bond. The participant made images of many things that were new to the assistant and that facilitated conversation between the two. In contrast, another participant took only one photo during the entire process. The suggestion to support him in this process by, for example, going out together to take pictures, he kindly declined. In fact, as he indicated at each meeting, he was satisfied with the process of taking pictures. Instead of focusing on the ‘proper performance of the research technique’ by assisting him, he chose to just have the discussions about his care and support and the opportunities the personal budget provides. These examples show that the participants actively shaped the way in which the research was carried out and what data was produced. A sensitive responsiveness and reflexive attitude on the part of the researcher is of paramount importance for the participants to be able to participate actively in the process of knowledge construction. The plurality of ways of collecting data – by creating opportunities for participants to express their stories visually, verbally and even through actions – proved to be fruitful in capturing this plurality of stories and in giving

368  Research handbook on disability policy participants the opportunity to make their own decisions in the research process. If we had included as participants only those people who communicate verbally, the aim of this study, to find out what people with intellectual disabilities value as a meaningful concept of autonomy, would not have been possible.

VIEWS OF TEN PEOPLE WITH INTELLECTUAL DISABILITIES ON AUTONOMY: DIVERSE NOTIONS OF ‘A GOOD LIFE’ We have drawn attention to the observation that a rational and humanist understanding of autonomy, argued from the universality of human rights, and characterized by a huge heterogeneity of needs, is applied to people with intellectual disabilities (Mansell, 2006). Implementing personal budget policies solely as a means to contribute to people’s independence entails the risk that conversations about what ‘autonomy’ can mean for a person, in what way the care and support can contribute to this and what elements are deemed valuable or impeding, are no longer part of the care and support practice. For practices of personalization not to be limited to only increasing accessibility and the implementation of rights, people with disabilities must be recognized and acknowledged as equal actors in policy and research processes. As pointed out in the previous section, to strengthen this reflection, we explored together with ten people with intellectual disabilities what the concept of ‘autonomy’ means to them. In retrospect, this study was a shared exploration of what they value in their present care and support and a projection of their possible futures. It became clear that the normative interpretation of autonomy as anchored in the Flemish personal budget policy is different from their interpretation of autonomy. An important note to bear in mind is that stories not only present the subjective definition of a situation, as accounted for by their tellers, but also highlight the social constraints upon each individual (Goodley, 1996). This relates to the situatedness of the participant’s stories in a concrete time and space. Through this awareness, the stories are a clear reflection of how they understand their personal condition in that specific time and place (Guillemin and Gillam, 2004). The place, an institutional care setting, is presented by our respondents as a given that offers them opportunities but also limitations. The central elements in their lives, as revealed in the photographs they have taken and the stories that accompany them, teach us about what makes their lives ‘a good life’ in the present, from which we have explored together how they project their future. It is the relationships with significant others that form the backbone of the ten photographic narratives. In the discussions about these photographs, the participants made it clear that significant others, because of their disability, play a vital role as ‘necessary others’ who feed a multitude of possibilities. These joint explorations have taught us that a personal budget and an interest in managing resources for their care and support does not contribute to their interpretation of autonomy and of ‘a good life’. After all, money is an abstract commodity, something that many participants are still learning to use with the help of their personal assistant or family members. All persons receive pocket money, which is sent to them by relatives and varies between 5 euro and 50 euro per week. This money is used to pay for extra leisure activities and personal expenses such as groceries. Common expenditure items are cigarettes and sodas, but cat food and tickets for a drag queen show are also paid for with this money. One participant indicates that she is very limited in her ability to manage money, but together with her personal assistant she learns how to use

Questioning the dominant welfare discourse in personal budget policy  369 10 euros by adding up the amounts of all products while shopping. When this respondent was asked why she found it important to go for groceries, as depicted on many of her photos, she answered: “because she is a good support worker”. During the conversation it soon appeared that in addition to the importance attached to shopping as an activity in itself, the learning process associated with it was of great importance to her. Whilst shopping together, the personal assistant would teach her how to use and manage money. “I can already cope with 10 euros”, she says. For this person, the picture of a car full of groceries reveals that she is able – through the support of her support worker – to do errands. The thought of doing the same activities without her personal assistant is too much for her. Only one participant saw merit in using her personal budget to exercise more active control. However, during this conversation, she indicated that she would probably only buy food with it, and therefore it was not a very good idea. What all participants were very interested in was having more money, in other words a larger amount of pocket money to carry out more leisure time activities or purchase food, cigarettes, games and a bike, amongst other things. A lesson we learn from this finding is that ‘care and support’, for which a personal budget should be used, is interpreted too narrowly in the Flemish PVF policy. Namely, many leisure activities, which participants have to use their pocket money for, also constitute a form of support and increase their well-being. For example, having a pet, learning to ride a bike and going on a summer camp, things that greatly contribute to those individuals’ notion of ‘a good life’ and autonomy, cannot be paid for by the personal budget for care and support. This observation emphasizes that the ideal of rational autonomy being equated with independence is the dominant policy discourse, as described by Mladenov (2012). If the personal budget policies genuinely aim to contribute to the emancipatory aspect of personalization (Lymbery, 2012; Ferguson, 2007) – the realization of individual notions of what a ‘good life’ might entail – no distinction should be made between ‘care and support’ and other activities. We make this argument because the promise of greater freedom of choice regarding care and support, as provided by a personal budget, is of little value to our participants. First, they already shape the care and support practice they find themselves in at the moment. Second, they do not see their care and support as elements that should contribute to autonomy understood as independence. The assumption of rational autonomy and independence, as embedded in the logic of personal budgets, does not do justice to what it means for them to live a good life. This requires a reconsideration of interdependence as the basis for all human interaction and as a universal feature of the human subject (see Mansell, 2006). As a manifestation of interdependence, the participants overturned the assumption of people with intellectual disabilities as one-sided recipients of care and support by making clear that they shape the ‘what and how’ of the care practice in their relationships with professionals and other important persons in their lives. That these (caring) relationships are to a large extent characterized by interdependence is recognized by all participants but questioned at the same time. This struggle and ambiguity are not expressed in a ‘detachment’ or an attempt to gain independence. Rather, it is fuelled by an urge to mean something and take a stance in the relationship with the necessary other. This involves small gestures; however, they do imply that the person has equal standing in the relationship with the other. An example: Olivia (female, 69 years) seems to comply with the cliché image of a lady in a nursing home as she spends her time listening to music (the Beatles and Rod Stewart), hosting other residents and care-

370  Research handbook on disability policy takers for coffee, and having her daily work with reading the newspaper, the advertizing magazines and petting her cat called Diego. Throughout the day, people visit her studio and each time they have to make sure that there is coffee for Olivia, for themselves, and for the other residents and caregivers who might drop by later on. Olivia expressed during the interview that she can actually make her own coffee, but that the others should not know that. She says that if ‘they’ knew, nothing would be done for her at all, and that she would be alone for most parts of the day.

This exemplifies that care and support practice is always a contested and complex issue that invokes “multiple relations of power” (Williams, 2001, p. 468). Above all, the stories of our participants are full of acknowledgments of the need for connection with and dependence on others. Not only their evaluation of the present but also their aspirations and thus projections of their possible future consist of things that can be achieved by and with others, not things where independence and individuality take precedence.

DISCUSSION: RECIPROCITY AND INTERCONNECTEDNESS We addressed the question of how personal budget policies, reflecting a translation of Article 19 of the UNCRPD into policy and practice, provide opportunities for shaping care and support practices for people with intellectual disabilities according to their individual preferences and choices, and how this relates to the social justice agenda. This concerns the way in which people with intellectual disabilities are positioned in respect of the intention to empower them as ‘self-determining subjects’, on the one hand, and how the pursuit of inclusion and social justice is shaped in relation to those people who are not self-determining and who will always be in a dependent position, as well as being in need of principles of solidarity, on the other. The value judgments that the Flemish personal budget policy has adopted, such as the proposed ideal of “vermaatschappelijking van de zorg”, the idea of being an ‘informed citizen-consumer’, and the idea that the personal budget should ultimately contribute to the realization of being a rationally autonomous citizen, turn out to be of little significance for the ten people with intellectual disabilities in our study. The underpinning ‘humanist’ and ‘ableist’ norm (Goodley, 2018) does not start from a recognition of multiple possible interpretations of what a ‘good life’ means. Rather than responding to the needs of the people concerned, social policies for people with intellectual disabilities have been redesigned to emphasize personal autonomy and choice to such an extent that they seem to have become an expectation. The UN Convention on the Rights of Persons with Disabilities (UNCRPD), with Article 12: Equal recognition before the law, provides the potential to ensure that people who do not fit the ‘rational autonomous rights-holder’ can enjoy all their human rights, especially through the use of support. The Committee on the Rights of Persons with Disabilities points in General Comment No. 5, Section 81 to the following relation of Article 19 with Article 12: Equal recognition before the law (art. 12) ensures that all persons with disabilities have the right to exercise their full legal capacity and therefore have the equal right to choose and control over their own lives by choosing where, with whom and how they want to live and to receive support according to their will and preferences. To fully realize the transition to supported decision-making and implement the rights enshrined in article 12, it is imperative that persons with disabilities have the opportunity to develop and express their will and preferences in order to exercise their legal capacity on an equal basis with others. To achieve this, they have to be a part of the community. Furthermore, support in the exercise of legal capacity should be provided by using a community-based approach,

Questioning the dominant welfare discourse in personal budget policy  371 which respects the will and preferences of individuals with disabilities. (Committee on the Rights of Persons with Disabilities, 2017)

Even though support and legal assistance are built into the Flemish PVF policy – for example a service called ‘support plan service’ maps out the possibilities and wishes with the prospective budget holder, and five subsidized assistance organizations can assist the person with the administration and management of a personal budget – this still does not guarantee a care practice that truly takes into account the meaning that individuals have attached to the notions of ‘autonomy’ and ‘independence’ and what a good life means to them. Providing assistance in the management and use of the budget helps people to fit in with the normative criteria for making good use of a personal budget, as enforced by the humanist interpretation of human rights (Braidotti, 2013). But it minimizes diversity and draws on what are deemed to be common or universal values. This entails a consumerist view on citizens within an “enterprise culture” (Honneth, 1995), which dictates self-realization as the ultimate good. The support mechanisms formulated by the policy, and aligning with Article 12 of the UNCRPD, do indeed contribute to the opportunities of people with disabilities to develop and express their will and preferences in order to exercise their legal capacity on an equal basis with others. However, all such interventions are in themselves no guarantee that the will and preferences of individuals with disabilities will be respected. These interventions are not designed to question the humanist interpretation of autonomy on which personal budgets are grounded, nor to explore what autonomy and personalization mean for the individual. These practices support people with the use of a personal budget and to make choices about their care and support in a consumer-like manner; however, this disregards their agency in everyday interactions altogether. We could not discern an appreciation of the personal budget policy in any participant’s story. Moreover, the prospect of using the personal budget to purchase care and support and have a greater say in the care relationship was not appealing to them. In fact, they revealed different notions of autonomy, layered and intertwined, all of them acknowledging interdependency and interconnectedness. The ten people with intellectual disabilities in our research display a very strong recognition with regard to their own strengths, opportunities and limitations, and what others mean to them in realizing these opportunities. The interdependent notion of autonomy contributes to the awareness of a multiplicity of perspectives on what autonomy might mean in situations with specific characteristics, in a given context of place and time (Pols, 2006). Acknowledging the reciprocity and interconnectedness in human interactions holds an acknowledgment of each person’s agency and impact on other people’s actions. This relational understanding of autonomy refers to an autonomous self that “is only made possible by the human relationships that nourish it and the social infrastructure that supports it” (Lister, 1997, p. 114). In this vein, Pols (2006, p. 96) states that “it is not of central importance to be autonomous; instead, the citizen has to establish and maintain relations with other people […] To be citizen, to be connected to other people.” We argue that this recognition of interconnectedness is in itself a recognition of the autonomy of each person as a given, and as a central feature of each human being (Mansell, 2006). From this recognition, there is no need to bring people towards another normative notion of autonomy, such as the notion of ‘the ideal client’ and the humanist notion of autonomy that underpins the personal budget policies under scrutiny. The story of humankind for Honneth (1995) is as much a continuous struggle for recognition as it is one for freedom. And as

372  Research handbook on disability policy a matter of fact, this points precisely to people’s shared quest for personal autonomy, one that acquires significance in interactions. We conclude that exactly by focusing on individual unrecognized stories and by sharing those stories, social professionals can provide alternative interpretations that question the existing norms and can hold the opportunity to contribute to a debate, and to the development of a care and support practice that is concerned with individual well-being and with social justice. Sharing those hidden stories with layered interpretations of autonomy can contribute to a critical view on human rights that balances the usefulness of an appeal to individual human rights against a careful consideration of what is being achieved through such an appeal.

REFERENCES Arksey, H., and Baxter, K. (2012). Exploring the temporal aspects of direct payments. British Journal of Social Work, 42(1), 1–18. doi:10.1093/bjsw/bcr039 Benoot, T. (2021). Autonomy in social work: A search for social justice: The case of personal budgets in the care for people with intellectual disabilities [Doctoral Thesis]. Universiteit Gent, Faculty of Psychology and Educational Sciences. http://hdl.handle.net/1854/LU-8697846 ​ ​ ​ ​ ​ ​ Benoot, T., Dursin, W., Verschuere, B., and Roose, R. (2018). Het persoonsvolgend financieringssysteem in de sector voor personen met een handicap. Landenstudie: Nederland, Engeland en Duitsland. Leuven: Steunpunt Welzijn, Volksgezondheid en Gezin. Benoot, T., Dursin, W., Verschuere, B., and Roose, R. (2020). A visual report on what is of value for people with intellectual disabilities in a Flemish care institution. Journal of Intellectual & Developmental Disability. doi:10.3109/13668250.2020.1847977 Booth, T., and Booth, W. (2003). In the frame: Photovoice and mothers with learning difficulties. Disability & Society, 18(4), 431–442. doi:10.1080/0968759032000080986 Bouverne-de Bie, M. (2015). Sociale agogiek: een sociaal pedagogisch perspectief op sociaal werk. Gent: Academia Press. Braidotti, R. (2013). The posthuman. London: Polity. Brookes, N., Callaghan, A., Netten, A., and Fox, D. (2015). Personalisation and innovation in a cold financial climate. British Journal of Social Work, 45(1), 86–103. doi:10.1093/bjsw/bct104. Committee on the Rights of Persons with Disabilities. (2017). General Comment No. 5 on living independently and being included in the community. Retrieved on 20 September 2021 from https://www ​ ​ .un.org/ ​ Department of Welfare, Public Health and Family Affairs. (2010). Perspectief 2020: nieuw ondersteuningsbeleid voor personen met een handicap [Perspective 2020: A new support policy for disabled people]. Brussels: Flemish Government. Department of Welfare, Public Health and Family Affairs. (2013). Policy White Paper. Brussels: Flemish Government. De Wilde, L., Roets, R., and Vanobbergen, B. (2019). Discovering dimensions of research ethics in doing oral history: Going public in the case of the Ghent orphanages. Qualitative Research, 20(3), 294–306. doi:10.1177/ 1468794119851330 Dursin, W., Benoot, T., Roose, R., and Verschuere, B. (2021). Choice and opportunity on the welfare care market: An experimental evaluation of decision-making in a context of individual funding policy. Social Policy & Administration. doi:10.1111/spol.12723 Ferguson, I. (2007). Increasing user choice or privatizing risk? The antinomies of personalization. British Journal of Social Work, 37, 387–403. doi:10.1093/bjsw/bcm016 Goodley, D. (1996). Tales of hidden lives: A critical examination of life history research with people who have learning difficulties. Disability & Society, 11(3), 333–348. doi:10.1080/09687599627642 Goodley, D. (2018). The dis/ability complex. Journal of Diversity and Gender Studies, 5(1), 5–22. doi:10.11116/digest.5.1.1 Goodley, D., Lawthom, R., and Runswick-Cole, K. (2014). Posthuman disability studies. Subjectivity, 7, 342–361.

Questioning the dominant welfare discourse in personal budget policy  373 Guillemin, M., and Gillam, L. (2004). Ethics, reflexivity, and ‘ethically important moments’ in research. Qualitative Inquiry, 10(2), 261–280. Harpur, P. (2012). Embracing the new disability rights paradigm: The importance of the Convention on the Rights of Persons with Disabilities. Disability & Society, 27(1), 1–14. Honneth, A. (1995). The struggle for recognition: The moral grammar of social conflicts. Cambridge: Polity. Jurkowski, J. M. (2008). Photovoice as a participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and Developmental Disabilities, 46, 1–11. doi:10.1352/0047-6765(2008)46[1:PAPART]2.0.CO;2 Lister, R. (1997). Citizenship: Feminist perspectives. London: Macmillan. Lymbery, M. (2012). Critical commentary: Social work and personalisation. British Journal of Social Work, 42, 783–792. doi:10.1093/bjsw/bcs027 Mansell, J. (2006). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual and Developmental Disability, 31, 65–76. doi:10.1080/13668250600686726 McKenzie, J., and Macleod, C. (2012). Rights discourses in relation to education of people with intellectual disability: Towards an ethics of care that enables participation. Disability & Society, 27(1), 15–29. doi:10.1080/09687599.2012.631795 Mladenov, T. (2012). Personal assistance for disabled people and the understanding of human being. Critical Social Policy, 32, 242–261. Mladenov, T., Owens, J., and Cribb, A. (2015). Personalisation in disability services and healthcare: A critical comparative analysis. Critical Social Policy, 35(3), 307–326. doi:10.1177/0261018315587071 Payne, M. (2006). What Is Professional Social Work? Bristol: Policy Press. Pols, J. (2006). Washing the citizen: Washing, cleanliness and citizenship in mental health care. Culture, Medicine and Society, 30(1), 77–104. Priestley, M., Jolly, D., Pearson, C., Riddell, S., Barnes, C., and Mercer, G. (2006). Direct payments and disabled people in the UK: Supply, demand and devolution. British Journal of Social Work, 37(7), 1189–1204. doi:10.1093/bjsw/bcl06 Roets, G., Dermaut, V., Benoot, T., Claes, C., Schiettecat, T., Roose, R., Van Lancker, W., and Vandevelde, S. (2020). A critical analysis of disability policy and practice in Flanders: Towards differentiated manifestations of interdependency. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 108–115. doi:10.1111/jppi.12336 Roose, R., Roets, G., and Bouverne-de Bie, M. (2012). Irony and social work: In search of the happy Sisyphus. British Journal of Social Work, 42(8), 1021–1034. Sen, A. (2004). Elements of a theory of human rights. Philosophy & Public Affairs, 32(4), 315–351. Stammers, N. (1999). Social movements and the social construction of human rights. Human Rights Quarterly, 21(4), 980–1008. Tonkens, E. (2003). Mondige burgers, getemde professionals: marktwerking, vraagsturing en professionaliteit in de publieke sector. Utrecht: Nederlands Instituut voor Zorg en Welzijn/NIZW. United Nations. (2006). Convention on the Rights of People with Disabilities (CRPD). Retrieved on 3 September 2020 from https://www.un.org/ ​ ​ ​ ​ Walmsley, J. (2005). Institutionalization. A Historic Perspective. In K. Johnson and R. Traustadòttir (Eds). Deinstitutionalisation and people with Intellectual Disabilities. In and Out of Institutions (pp. 50‒65). London: Jessica Kingsley Publishers. Wang, C., and Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education and Behaviour, 24, 369–387. doi:10.1177/109019819702400309 Williams, F. (2001). In and beyond New Labour: Towards a new political ethics of care. Critical Social Policy, 21, 467–493. doi:10.1177/026101830102100405 World Health Organization. (2020). Definition: Intellectual Disability, 31 August. Retrieved from https://www.euro.who.int/ ​ ​ ​ ​

31. Negotiating rights in education: an examination of U.S. education disability policy Catherine Kramarczuk Voulgarides

In the United States (U.S.), during the 1950s, issues related to disability were quietly and un-controversially integrated into federal policy and disability policy was characterized by fractured governmental representation and policy development by subgroup or dis/ability category (Pettinicchio, 2019). However, the civil rights victories of people of color and women during the 1960s pushed the U.S. Congress to consider the importance of disability rights (Minow, 2010; Skrentny, 2009). In the 1970s, disability advocates asserted that the segregation and exclusion of students with disabilities from educational services was a violation of the U.S. Constitution’s Equal Protection clause and due process. This legal and legislative strategy mirrored the one used in the historic Brown v. Board of Education (1954) decision, which argued that separate was not equal as it related to racial segregation (Minow, 2010; Ong-Dean, 2009). The advocacy strategy led to the eventual passage of the Education for All Handicapped Children Act (EAHCA, 1975), which served as the legislative basis for the Individuals with Disabilities Education Act (IDEA, 1997, 2004)—a highly influential piece of legislation affecting students with disabilities in U.S. schools. These policy developments signaled a dramatic shift in how disability policy was conceptualized within the U.S. context. Advocacy efforts became centered upon a collective disability identity, rather than upon advocacy for a specific disability category (Pettinicchio, 2019). The shift was a step forward in securing the civil rights of people with disabilities and since then, civil rights discourse has been at the forefront of disability policy in the U.S. context. However, despite over 50 years having passed after the passage of the EAHCA, significant inequities in special education outcomes have been consistently documented (e.g., Ahram, Voulgarides, & Cruz, 2021; Skiba et al., 2008). And despite legal language that secures the rights of students with disabilities within U.S. schools, formal legal mandates do not always guarantee the equitable treatment of all people. This reality is especially true for students with disabilities at their intersections (e.g., disability and race, language, gender, ethnicity, and so forth). The rights of students with disabilities at their intersections remains a pervasive civil rights concern within the U.S. context (e.g., Artiles, 2019). Compounding the issue, education is not a guaranteed civil right within the U.S. Constitution. In the U.S., education is the responsibility of state governments. States interpret federal policies and adapt them to their local contexts with a considerable degree of latitude. The resulting educational federalism (Robinson, 2013, as cited in Strassfeld, 2016) favors state autonomy over federal mandates. Federal mandates are locally interpreted by states and then state educational agencies interpret policy for local education agencies, or school districts. Thus, policy mandates “develop and achieve salience through specific discourses and actions adopted by local entities,” which in turn “are intimately connected to how local actors encounter and perceive the policy directives of federal and state agencies” (Spillane, Gomez, & Mesler, 2009, p. 409). As policies are locally negotiated, civil rights discourse surrounding 374

Negotiating rights in education  375 disability is intertwined with people’s responses to policies and laws at the local level. This chapter focuses on understanding the dynamics associated with the intersection of civil rights discourse surrounding disability, educational equity, and the complexity of the policy implementation process. It is important to note that in this chapter I refer to civil rights in the U.S. context as being related to basic human rights. It is generally understood that human rights are granted at birth, while civil rights are given to a particular group or person by a nation state, but there are many commonalities between the two (Howard University School of Law, n.d.). Civil rights are relatively new, yet well developed in the United States, but they are not internationally recognized (Howard University School of Law, n.d.). However, the development of civil rights discourse in the U.S. surrounding disability policy and education has been a parallel and intersecting process with international efforts to include disability as a human right. In Gartner and Lipsky’s (1999) discussion of the intersections between disability, human rights, and education, they state that “the expression of human rights in the education of students with disabilities is seen in the honoring of the principles of respect and belonging,” which “in keeping with the understanding that disability must be seen in a social context … requires not simply individual adaptations but overall school restructuring” (p. 115). Thus, the specific policies and laws discussed in this chapter are unique to the U.S. context, but the analysis can provide insight to other contexts.

SCOPE OF THE CHAPTER In this chapter I unpack how the individualized rights framework of IDEA is both rehabilitative and civil rights-oriented. I argue that the framework does not adequately protect students with disabilities at their intersections in everyday educational practice and that technical and procedural evidence of compliance does not assure substantive compliance with the intent of IDEA. Using one ethnographic moment, I illustrate how there is a seemingly inescapable compliance paradigm that engulfs special education in the United States. The compliance paradigm constrains how educators respond to students and families when providing educational services. It is also deeply embedded in the professional culture and norms of everyday educational practice and promotes ableism and inequity. I also argue that the competing frameworks, between rehabilitative and civil rights orientations, generate ethical and moral dilemmas for educators that further marginalize the very students that IDEA was designed to protect. The chapter thus provides a critique of the welfare state through a sociopolitical analysis of sorts. By focusing on the competing frameworks, I shed light on the paradox of liberal individualism which allows students with disabilities to have the right to receive educational services because of the very fact that they are deemed to be abnormal citizens and are thus deserving of welfare policies and supports (e.g., Erevelles, 2011). In this sense, the welfare state deems students with disabilities as deserving of educational supports and services, yet the right to receive these services is predicated on the need to rehabilitate and fix those who do not fit into existing societal structures. I conclude the chapter with a discussion about the implications of this paradigm on broader patterns of educational equity.

376  Research handbook on disability policy

DISABILITY AS A CIVIL RIGHT WITHIN A REHABILITATIVE FRAMEWORK IN EDUCATION U.S. governmental disability policy has historically deferred to “science” and medical understandings of disability, which positions people with disabilities as patients/clients of the state who, through policy remedies, can be assisted in becoming functioning members of society (Pettinicchio, 2019). While well intentioned, many of the federal policies and programs that were instituted during the 1960s sought to correct and/or compensate for disabilities (e.g., Erkulwater, 2006). This rehabilitation and remediation lens frames people with disabilities as dependent and passive citizens. It also assumes that people with disabilities are in need of “fixing,” regardless of the civil rights policy framework that emerged in the 1960s and 1970s. The framework, while rooted in an ethics of care, promotes a deficit-based approach to securing the rights of people with disabilities in the U.S. context. The result is a relatively “disorganized” policy environment, with unresolved tensions between rehabilitation and rights-based language (Pettinicchio, 2019, p. 73), which is evident in IDEA. IDEA delineates a clear obligation for state governments to protect the rights of students with disabilities in schools. However, these rights are framed through technical, individualized, and proceduralized policy remedies (Voulgarides, 2018) and they are also rooted within a remediation and interventionist framework (Erkulwater, 2006). Since its inception, IDEA legislation has relied upon a deficit and medicalized model of disability whereby disabilities reside within individuals and not within social structures that operate with culturally situated and problematic assumptions of “normalcy” (Baglieri & Lalvani, 2019; Valle & Connor, 2010). This view of disability does “not reject medicine, research, or wellness, but instead aim[s] to bring attention to the significant impact that political voice, social and environmental access, and the reduction of discrimination have on people’s lives” (Baglieri & Lalvani, 2019, p. 17). It is society’s reaction to and understanding of disability that matters and thus shapes how policy is formed and used in educational practice. Thus, the way in which “disability” is conceptualized in IDEA and how “disability” is subsequently “remedied” within schools reflects society’s priorities and understandings of disability. For example, ableist policy mechanisms are evident in IDEA through its very construction. A student can only receive specialized educational services if they are labeled with a disability (Beratan, 2006). A child must embody the characteristics of one of the 13 medicalized disability categories, as they are defined in IDEA, in order to participate in “special” education. “Special” educational resources will not be siphoned towards a student without classification, drawing a distinct line between ideas of normality and abnormality that are solidified through classification systems defined by the parameters of IDEA. What results is that ableist and medical models of disability are seamlessly integrated into educational practice through IDEA provisions and through educators’ use of IDEA. The classification system stemming from IDEA is widely accepted and taken for granted as the “right” way to understand disability within schools. A “good, usable” classification system, like IDEA, “disappear[s] almost by definition” (Bowker & Star, 2000, p. 33) as “the easier they [classification systems] are to use, the harder they are to see,” and thus “good” systems of classification serve as both “a moral and an informatic” system (ibid., p. 324). Classification systems also serve as a tool of power that “constrain[s] and contain[s] people who do not fit into dominant categories of privilege” (Bowker & Star, 2000, p. 438). IDEA, thus, is a “good” and “usable” system of classification that encompasses both a civil rights framing of disability

Negotiating rights in education  377 and a rehabilitative framework. It is protective and ableist at the same time. The contradiction exposes the duality of disability that can both marginalize and protect students (Artiles, Dorn, & Bal, 2016). The benefit or harm experienced by students with disabilities in schools is thus dependent upon the temporal and sociocultural conditions of their schooling experiences. It is in this space that the contradictory policy framework of IDEA is locally negotiated by educators as they interact with, interpret, use, and apply IDEA to educational practice.

POLICY COMPLIANCE WITHIN LOCAL CONTEXTS The disorganized and contradictory policy framework of IDEA is further muddied by the rigid compliance structures associated with IDEA implementation. IDEA is a highly proceduralized and individualized law. Although it started as a civil rights-based piece of legislation, over time it has morphed into a compliance-oriented piece of legislation. State, district, and educators’ evidence of compliance with IDEA’s procedural protections have served as evidence of the substantive monitoring of civil rights concerns (e.g., Voulgarides, 2018; Zirkel, 2005)—a form of legal endogeneity (Edelman, 2016). Legal endogeneity is the process whereby “law acquires meaning from (and thus becomes in part endogenous to) the social arenas that it seeks to regulate” (Edelman et al., 2011, p. 890). Endogeneity arises when social reform laws, like IDEA, are proceduralized due to the inherent ambiguity associated with mandating civil rights and social justice outcomes. The proceduralization leads to a proliferation of symbolic compliance structures that allow for organizational actors to symbolically comply (Meyer & Rowan, 1977) with civil rights-oriented policy mandates without actually needing to realize civil rights outcomes (Edelman, 2016). Through the process, managerial values, priorities, beliefs, and orientations are infused into acts of policy compliance, thus pointing to the endogenous nature of law. In this case, procedural compliance is equated with substantive compliance with IDEA. The dynamic was particularly evident in the Board of Education of the Hendrick Hudson Central School District v. Amy Rowley (1982) case, which established a precedent for providing students with disabilities with a free appropriate public education, or FAPE, a central tenet of IDEA. The Rowley court determined that the procedural requirements of IDEA reflect a “legislative conviction” that the substance of an appropriate education would usually be realized by simply meeting the law’s procedural requirements (Ong-Dean, 2009, p. 32). What results from court decisions like these, over time, is that a seemingly inescapable compliance paradigm is built around IDEA implementation that affects how educators interpret, use, and apply the law to educational practice (Voulgarides, 2018). The compliance paradigm is a complex problem that constrains how educators respond to students and families when providing educational services. It is deeply embedded within the professional culture and norms of everyday educational practice, creating an iron cage of bureaucracy (Weber, 2009) that stifles creative solutions to complex equity problems. Neo-institutionalists DiMaggio and Powell (1983) argue that through isomorphic forces organizational and professional fields generate an “iron cage” around social actors that constrains how they can respond to and react to their environments. Isomorphism is the process whereby organizations, across various locales, space, and places, begin to act similarly when addressing complex issues due to mimetic, normative, and coercive social forces (DiMaggio & Powell, 1983). Mimetic forces are characterized by individuals looking to others in similar

378  Research handbook on disability policy situations for guidance on how to address multifaceted and complex problems. Mimetic forces perpetuate homogeneity in organizational responses to complex problems. Coercive forces are culturally accepted rules of action that are particular to a field or job. These may include regulatory, legal, and policy pressures that shape how organizational environments are constructed. Normative forces relate to an organizational field’s professional norms, which shape how an individual should act within their professional space. Within the field of special education, these social forces push educators towards complying with IDEA in ways that may further distance them from the civil rights concerns that are central to the legislation. They may also comply with IDEA in ways that promote ableism and discriminatory practices. This is because compliance distances educators from the students they must serve as the policy mechanisms do not account for how often unseen racial and ability ideologies influence how policies, procedures, and everyday educational practices contribute to inequities in special education (e.g., Obasogie, 2020; Voulgarides, 2018). What results is a logic of compliance surrounding IDEA administration and implementation that limits educators’ capacity to substantively protect and serve students with disabilities in schools in an equitable and just manner (Voulgarides, 2018; Voulgarides et al., 2021). In the remainder of this chapter I present an ethnographic moment that highlights the tensions described here in both the ideological framing of IDEA and how it is used in educational practice. The ethnographic moment highlights how multiple and competing ideological, organizational, interpersonal, and resource constraints raised ethical questions about the application and use of IDEA. The competing frameworks, between rehabilitative and civil rights, also generated unintended consequences that further marginalized the very students that IDEA was designed to protect.

METHODS For this chapter, I draw upon one ethnographic moment that was captured during a broader comparative ethnographic study that took place over the course of the 2011–2012 academic year. The study involved approximately 1,200 hours of fieldwork, inclusive of observations and formal and informal interviews. The study was focused on understanding how compliance with disability legislation relates to racial inequities in special education in three socio-demographically different school districts in the northeastern United States. In the broader comparative study, I chose to study high-level special education administrators because they oversee the majority of special education activities across their district’s schools. This way, I could see, understand, and record how they made sense of and used IDEA in practice. While in the field, I spent the majority of my time following the daily activities of each district’s special education administrator in his or her office, attending student special education meetings, participating in cabinet meetings with other district- and building-level administrators, attending professional development and departmental meetings, visiting and consulting with teachers, sitting in on instructional consultation meetings, and other such activities. In these spaces I paid attention to how the administrators followed rules and procedures and how they informally interacted with other district staff, parents, and students. In addition to fieldwork, I conducted 26 formal interviews across all three districts with district staff (e.g., secretaries, social workers, assistant superintendents, building principals) and 60 ad hoc informal, open-ended interviews with teachers, security guards, custodians, social

Negotiating rights in education  379 workers, and building principals. Lastly, in this broader study, I gathered meeting agendas, handouts, district forms, and local newspapers, and I monitored blogs and online commentaries about the districts and school boards. The documents offered insight into the formal and informal practices of each district. Collectively, these data sources provided ample material to triangulate and make robust conclusions about the data. A Chosen Ethnographic Moment In this chapter I report on one ethnographic moment observed during a “district collaborative” meeting. The meeting brought together approximately 30 district special education administrators from one geographic region to discuss special education trends, concerns, and issues affecting students with disabilities. All three districts that were included in the broader comparative study participated in a district collaborative. In these meetings, which met once every couple of months, the administrators would discuss policy-related issues, resource constraints, and ways in which they could build their capacity to regionally provide intervention services for students with severe needs. The district collaborative is not unique to the study. In the U.S., many states participate in some sort of district collaborative to streamline the delivery of educational resources and special education services across geographic locales. The collaborative allows districts to share resources and services that they might not be able to individually provide to students and families. These services include intensive behavioral, academic, and emotional supports for students with disabilities. The district collaborative is a publicly funded entity. The ethnographic moment reported upon here in this chapter illuminates the complex policy mechanisms associated with legislating disability within schools. It exposes how the tensions between rehabilitative and civil rights frameworks influence how educators made sense of policy, their workflow, and how they made decisions about providing educational services to students with disabilities. The ethnographic moment also exposes the complex moral, ethical, procedural, and substantive concerns that constantly surround the delivery of special education services and the contours of the compliance paradigm in practice. Data Analysis Strategy I analyzed the data using a case-oriented approach (Miles & Huberman, 1994; Miles, Huberman, & Saldana, 2013), which considers each research site holistically before turning towards a broader comparative analysis. The method allowed for within-case differences to be preserved when subsequent cross-case comparisons are made. The approach allowed me to analyze the data through a policy lens that was attuned to identifying how tensions between a rehabilitative and civil rights framework intersected with the compliance paradigm. The data analysis was carried out in three distinct phases. The first consisted of within-case district coding. I looked for trends that emerged within each district surrounding the complexity of the policy implementation process. The second phase consisted of cross-district coding where I looked for similarities, differences, and nuances among the three districts in order to generate a broader understanding of how IDEA was implemented in each district. The third phase consisted of combining insights from phases one and two and applying these insights to a theoretical framework. It was here where I found rich ethnographic moments that revealed how complex policy implementation processes and the tensions between a rehabilitative and

380  Research handbook on disability policy civil rights framework converged in ways that often further harmed, rather than addressed, the needs of students with disabilities across all three districts. The district collaborative meeting, since it involved so many participants, allowed me to generalize my findings to a broader level. Below, I present the ethnographic moment.

THE DISTRICT COLLABORATIVE MEETING The district collaborative meeting consisted of 30 special education administrators from one region sitting together in a conference room in a U-shape. The meeting was led by a woman, given the pseudonym of Mrs. Frantanelli, who was the designated leader of the collaborative. She sat at the top of the U in front of all of the attendees. The meeting began with her rapidly going through several agenda items. The pace and rigor with which agenda items were discussed was startling. The pattern seemed to be that Mrs. Frantanelli would present substantive and important topics, field a few questions from attendees, express her thoughts on the issue, determine an outcome on the agenda item, with or without consensus from the group, and then move on to the next agenda item. The moral, ethical, and social justice-oriented natures of the topics were never engaged with. Rather, they were perfunctorily presented, addressed, and subsequently closed. Many of the agenda items that she addressed were focused on streamlining IDEA policy-compliance measures across all of the districts. These discussions rarely transcended into a conversation about substantive issues related to educational practice. One agenda item, though, disrupted this flow. Mrs. Frantanelli called it the “ESL issue.” In the U.S., ESL is short for English as a Second Language. It is defined by the United States Department of Education as the following: English as a Second Language (ESL): A program of techniques, methodology and special curriculum designed to teach ELL students English language skills, which may include listening, speaking, reading, writing, study skills, content vocabulary, and cultural orientation. ESL instruction is usually in English with little use of native language. (https://​www2​.ed​.gov/​about/​offices/​list/​ocr/​ell/​glossary​ .html​#esl)

The service is provided within U.S. schools, along with many other supports, to facilitate language acquisition skills for dual language learners. Students with disabilities are eligible for ESL services. Language rights for students were secured during the 1970s, around the same time that the EAHCA was passed. However, nearly 50 years after the passage of both language and disability policies, the rights of students at the intersection of language and disability have not been adequately upheld in U.S. schools. Educational equity has remained elusive for students at the intersection of disability and dual language status (Artiles, 2017). When presenting the “ESL issue,” Mrs. Frantanelli appeared to be both agitated and desperate to get the administrators to listen to her empathetically. She stopped her rapid pace delivery and loudly stated that she wanted to evaluate “the benefit of [giving] services [ESL] to kids with an IQ of, say, 40.” The students she was referring to were those who have serious cognitive delays and who were also legally mandated to receive both special education and ESL services. Mrs. Frantanelli explained to the group that the state education department had convened a committee to discuss how special education and ESL mandates intersected in

Negotiating rights in education  381 practice because the need to deliver both services to students was “burdening” educators and school systems. She further explained: I think some of the ESL regulations are contraindicative to the needs of special education students … again, I am talking about kids with an IQ, say, of 40. I find it ludicrous to pull out a kid from their appropriate [special education] environment because of an ESL mandate. The notion of pulling out a kid for ESL instruction with an IQ of 40?!?! To what end, exactly? To be with a teacher that is not trained to address their disabilities, but can provide ESL services? What’s the point?

Mrs. Frantanelli expressed to the group that she thought providing ESL services to students with low cognitive skills did not make sense. She told the group that she consistently shared her thoughts about this issue with the state education department and she found it “ludicrous” that “no solutions” had been proposed to address it. Mrs. Frantanelli then looked at the group and said, “If you don’t offer it [ESL services], then you are stuck with an impartial hearing and legal ramifications if you don’t provide 2 hours of [ESL] pullout!” She described how school districts could be sued, sanctioned, and punished if they did not provide the intersecting services for students with disabilities who are also emergent bilinguals. The stakes were high if the administrators did not comply with the intersecting mandates. She then added, “I have no problem not providing the 2 hours of pullout,” but “you may feel differently because you have to face the legal ramifications.” By solely focusing on compliance and the cost of compliance, Mrs. Frantanelli exposed a moral and ethical dilemma related to the “ESL issue.” Should the administrators comply with the intersecting mandates and provide both services to students? Or, should they choose one service over another? And, more consequentially, do “kids with an IQ, say, of 40” deserve to receive the services? The administrators in the room were quiet, so Mrs. Frantanelli continued, “I cannot handle you paying an exorbitant fee to provide ESL services for very low-level kids,” adding, “however, of course you [the administrators] should offer the services to more able students so you [the districts] do not expose yourselves to corrective [legal] action.” The ableism in her statement was explicit to the group at this point, but it was laced into a logistical and financial argument. Mrs. Frantanelli discussed the economic costs of providing both ESL and special education services to “low-functioning” students. She said, “We are in an economic time where we are literally looking at pennies” when servicing students with disabilities. As she spoke, she appeared to be walking a fine line between compliance, noncompliance, and outright denial of educational services to students whose school-based identities merged at the intersection of disability and emergent bilingual status. After some time, an administrator from the collaborative finally spoke out and said quietly, “We are struggling with this.” The administrator’s comment started a collective chatter in the room that lasted for several minutes. The moral and ethical dilemma was now open for discussion. Mrs. Frantanelli let the chatter continue for a few minutes before she interrupted it with the following statement, “I don’t understand why on earth you would pull out a self-contained kid for 2 hours to a non-special-education-trained ESL teacher,” adding that doing so is “contraindicative” to the needs of students with disabilities. She used the promise of IDEA, to provide rehabilitative and remediation services, to justify the denial of language services. She finished with a booming, “It’s insane!” With this last comment, Mrs. Frantanelli directly asked the administrators, “Would you like us to provide these [ESL] services for very impaired kids or would you like to not [provide the

382  Research handbook on disability policy services], knowing that if audited you will go to corrective action?” She was essentially asking the administrators if they would be ok denying ESL services to students with disabilities. However, she asked the question within a compliance paradigm framework. The question was a legal dilemma whereby noncompliance would expose the districts to potential litigation and “corrective action” from the state education department. In asking the question in this manner, she exposed a profound tension between the need to comply with IDEA, the costs of complying with IDEA, and the moral and ethical dilemmas that are associated with IDEA compliance. Embedded in this was a profound level of ableism, rooted within a rehabilitative framework, and questions about whether or not upholding the civil rights of students with disabilities at the intersection of language and disability was worth fighting for. The administrators in the room began to reply to Mrs. Frantanelli’s question. One stated, “We really need mandate relief for this because it doesn’t make sense,” referring to the burden of special education and language policy mandates. Another administrator, who was sitting next to Mrs. Frantanelli, shared his story about how he dealt with the “ESL issue.” The administrator told the group that in order to handle the “ESL issue,” he created a form that parents could sign that acknowledged they consented to their child not receiving ESL services. With this form he was asking parents to sign away their rights to receiving both language and special education services. The administrator said he did this in consultation with a state education department representative because they were also aware of how difficult it was to address the “ESL issue.” However, the administrator added that when his district was audited by the state he was cited for being noncompliant with the “ESL issue.” Mrs. Frantanelli interjected at this point and said, “The state said that their form was OK, then they told us it was not!” She added with apparent frustration, “Maybe someone should check on how the state is doing things!” The comments exposed how the compliance paradigm constrained not only the actions of the administrators in the room, but also state education department representatives. There seemed to be no easy way to escape the confines of the compliance paradigm. Another administrator used the flow of conversation to speak up. She stated, “You know, it is hard because there are no ESL parents championing their [ESL students’] rights like there are with disability parents.” The comment about parents was the first time, one hour and 30 minutes into a two-hour meeting, that someone spoke about civil rights concerns. The administrator pointed out how the civil rights of not only people with disabilities, but also emergent bilingual students were not at the forefront of the collaborative’s workflow and decisions unless an advocate could help them break through the compliance paradigm they were operating within. The comments prompted another administrator to add her experience with the “ESL issue.” She stated that the district “put all ESL kids in one school” so they can streamline services. The administrator described how she programmatically segregated students, both those with disabilities and those in need of language services, into one school building so that it was easier for her to give the “ESL kids” their mandated services. The segregation of these students lies in direct contrast to the spirit of IDEA, which is focused on the inclusion of students with disabilities in the least restrictive environment. The choice, though, allowed the administrator to simultaneously comply with IDEA and address the “ESL issue.” Procedural compliance was achieved, students with disabilities who were emergent bilinguals were provided with their legally mandated services, but all of this was done in a separate building. The need to comply with IDEA and the compliance paradigm dominated the administrator’s decisions and the flow

Negotiating rights in education  383 of the discussion in the collaborative. Substantive issues became a complicated logistical issue that had to be solved. After the comment about segregating students, Mrs. Frantanelli pivoted the conversation to the next agenda item. But before she completely abandoned the “ESL issue,” she added that she wanted to hear about how “everyone is dealing with this as time passes.” The experiences of the administrators in this ethnographic moment make it abundantly clear that the dynamics associated with the intersection of civil rights, educational equity, and the complexity of the policy implementation process were locally negotiated within an iron cage of compliance that did little to advance justice and equity for students with disabilities.

DISCUSSION The ethnographic moment makes it clear that the educators attending the district collaborative struggled to meet the procedural mandates and demands of IDEA. They struggled to avoid state audits of their educational practices. They also struggled to meet the needs of students at the intersection of disability and emergent bilingual status. The district collaborative operated with a specific orientation towards IDEA compliance that inadvertently denied equitable service delivery to students at the intersection of disability and emergent bilingual status. Thus, regardless of the civil rights framework behind IDEA and regardless of the good intentions of the administrators, they seemed unable to push past the need to comply. They also never challenged the ableism embedded in the conversation about the “ESL issue.” Within each act of compliance and each choice the educators made about the “ESL issue,” there was also a moral and ethical choice made about the value and purpose of special education and of who deserved to receive services. The ableism embedded in the discussion that Mrs. Frantanelli led about the “ESL issue” assigned a lower value of rights, and access to those rights, to a child with severe and profound disabilities. All of this was couched within the language of fiscal responsibility, the pressure to comply with IDEA, and so forth. The administrators made decisions about the “ESL issue” that not only further marginalized students, but also failed to engage with the substantive civil rights framework of IDEA. This allowed for a deficit and ableist framework, embedded within a rehabilitative lens, to remain undisturbed as they negotiated how to address the “ESL issue.” Additionally, the intersection of both language and disability law seemed to be too much for the educators to process and reconcile within their local contexts. These struggles were not limited to the district collaborative. They extended to state education officials who also did not know how to reconcile the “ESL issue” that Mrs. Frantanelli spoke of, either. It appeared that a child had to be either disabled or emergent bilingual, that both services could not be adequately provided at the same time. The educators struggled to parse out how intersecting mandates could be provided to students in a socially just and moral way. While the choices being made in the district collaborative about the “ESL issue” were complicated, a solution was needed and choices had to be made. The choice about what to do, according to Bowker and Star (2000), is “not inherently a bad thing—indeed it is inescapable,” when people interact with classification systems, but the choices are ethical ones “and as such it is dangerous—not bad, but dangerous” (p. 6) when these choices are being made. In the case

384  Research handbook on disability policy of the collaborative, value judgments were made about who had rights, whose rights mattered, and how rights would be protected, or not, in the midst of a complex compliance framework. The educators in the ethnographic moment seemed to be implicitly asking: Are emergent bilingual students with profound disabilities worth educating? Are they worth the extra time, money, and coordination of services? And if not, then how do we get mandate relief? These questions activated the messy core of IDEA, which contains both a rehabilitation and civil rights framework. The question, then, that the educators seemed to be grappling with was: Who deserves the right to receive services? This, in Bowker and Star’s words, is a very “dangerous” question. This dangerously profound moral and ethical question never explicitly surfaced in the district collaborative meeting though. The dynamics of the compliance paradigm obscured its presence in the conversation. Isomorphic social forces pushed the educators towards complying with IDEA in ways that distanced them from the civil rights concerns that are central to the legislation. They had to procedurally and technically comply with IDEA. They were professionally trained to procedurally and technically comply with IDEA. They felt normative and professional pressures to procedurally and technically comply. However, when they focused on technical and procedural compliance they did not engage with the civil rights impetus behind IDEA. And, therefore, they seemed to dance around the implicitly dangerous question that undergirded the discussion of the “ESL issue”: Who deserves the right to receive services?

CONCLUSION In summary, the practice of special education in the U.S. context requires a more purposeful balance between the moral and ethical obligation to advance civil rights principles in educational practice and the need to procedurally and technically comply with IDEA. This is because of the fact that embedded within all acts of policy compliance are ethical and moral choices. This also requires tackling the ableism associated with a rehabilitation lens. A child can be seen as either needing to be protected or needing to be rehabilitated and “fixed,” regardless of their rights. Both orientations never truly stand alone or are free of consequences. If these tensions are not resolved, then the entitlements, rights, and benefits afforded to all people with disabilities through U.S. federal policies like IDEA, coupled with the historical intertwining of disability and other social markers of difference which have been used to justify oppression, marginalization, and exclusion (Artiles, Dorn, & Bal, 2016), will continue to undergird everyday acts of IDEA compliance in harmful ways. Therefore, what must happen first is that educators and policymakers become aware of the limiting and stifling dynamics of the compliance paradigm and localized logics of compliance that deny rights, intentionally or not. The goal of raising awareness around these social forces not only pushes educators to examine their professionalism and orientation to their work and IDEA compliance, but it also creates space for productive tensions to arise that can shape and reshape educational practices. The resulting conflict, tensions, and antagonisms that arise from educators’ awareness of these social forces could serve to disrupt and dislodge the seemingly benign inertia of IDEA compliance that perpetuates inequities. It could also begin to legitimate other more just and equitable means of providing educational services to students with disabilities (see Mouffe, 2011 on why tension is necessary for change). Thus, who is allowed to have the right to receive educational services and supports becomes openly contested in

Negotiating rights in education  385 a new way. Rights are no longer afforded to those that “deserve” the fruits of welfare policies and supports, but rather are based upon the actual dignity and humanity of students, children, in schools.

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386  Research handbook on disability policy Pettinicchio, D. (2019). Politics of empowerment: Disability rights and the cycle of American policy reform. Stanford University Press. Robinson, K. J. (2013). The high cost of education federalism. Wake Forest Law Review, 48, 287–331. Skiba, R. J., Simmons, A. B., Ritter, S., Gibb, A. C., Rausch, M. K., Cuadrado, J., & Chung, C. G. (2008). Achieving equity in special education: History, status, and current challenges. Exceptional Children, 74(3), 264–288. Skrentny, J. D. (2009). The minority rights revolution. Harvard University Press. Spillane, J. P., Gomez, L. M., & Mesler, L. (2009). Notes on reframing the role of organizations in policy implementation: Resources for practice, in practice. In G. Sykes, B. Schneider, & D. N. Plank (Eds.), Handbook of education policy research (pp. 409–425). Routledge. Strassfeld, N. M. (2016). The future of IDEA: Monitoring disproportionate representation of minority students in special education and intentional discrimination claims. Case Western Reserve Law Review, 67(4), 1121–1151. Valle, J., & Connor, D. (2010). Rethinking disability. McGraw-Hill Publishing. Voulgarides, C. K. (2018). Does compliance matter in special education?: IDEA and the hidden inequities of practice. Teachers College Press. Voulgarides, C. K., Aylward, A., Tefera, A., Artiles, A. J., Alvarado, S. L., & Noguera, P. (2021). Unpacking the logic of compliance in special education: Contextual influences on discipline racial disparities in suburban schools. Sociology of Education, 00380407211013322. Weber, M. (2009). From Max Weber: Essays in sociology. Routledge. Zirkel, P. A. (2005). Does Brown v. Board of Education play a prominent role in special education law? Journal of Law & Education, 34, 255‒271.

32. Narrative 10: My education story Alexander Elliott

My earliest school memory is clicking my tongue. It was me in Year 4 or 5 at primary school dealing with being with myself. Another boy in my year looks at me and mimics me. He’s not frustrated, I know. He’s making fun of me. Some of his friends begin doing it as well. When I run away, they begin to chase me. To a teacher, it’s boys playing chases. How can I tell them what’s going on? I don’t know how to tell people that I’m being made fun of. I soon decide that I will not trust anyone but my books. They don’t make fun of me. I eventually move to a new school because my brother goes to it. I soon learn that there are people who like to trick you. I assume that they are friends. They would play tricks on me, take advantage of the weird kid who sat in meditation by himself (I’d seen a performance of the Shaolin monks and became obsessed with meditating). They lure me in by pretending to be friends, ask to borrow money and then never come back. When told by teachers or parents what was happening, I shut up shop to anyone I don’t immediately recognise, and devise nicknames for those people to help me remember names. Luckily, I can go sit in reception at lunch time and escape to my friends the books. From Lord Byron and Coleridge to ordinary football magazines. They don’t lie to me. My other hero is Link, from The Legend of Zelda. He’s an outsider too. He has those who work against him. I love Link. He was always a reluctant hero, because in the game there are centuries between when the so-called Hero of Time is needed and when there is peace. He is always the outsider, and always reluctant. He’s the one fairy child in a forest home who doesn’t have a guardian fairy, or he’s the one boy on a floating island who wants to dive off to explore the potential of other worlds far below. Thinking like Link makes me a hero, not a nobody. But to be a successful hero, I needed support, and I wasn’t offered that. Systems worked against me. My teacher works against me. It’s not autism, she decides. It’s not Asperger’s. He’s lazy, he’s a dreamer with bad behaviour. Send him to some other school because I don’t want him, she was thinking. She did not support or try to work with me. My parents supported me. My mother had known I was different since I was a toddler, and they always had my back. I didn’t understand the problem; it was my writing, wasn’t it? It’s clearly me – my handwriting was awful. I close myself off and try to head to the library as much as I can. The idea of sending me to some other school is the last straw. Word reaches the principal. He said he is going to sort things out. He knew there is a challenge, and this school was going to turn the boy into a man. He explained that the school has never turned away a student and they weren’t going to start with me. We will never know what he said to this teacher, but she is furious. I think he told her that the school has taken me in, they are going to teach me, and if she didn’t like it, there’s the door. I have now learnt that there are good and bad people in positions above you. I am supported through a new year, Year 6. The teacher is far kinder and takes the time to understand me, but I still don’t feel comfortable in talking to new people. Other students 387

388  Research handbook on disability policy have played tricks and conned me and I think they might make fun of me. I don’t see what the problem is. I think I’m the logical one. I tell the honest truth without spin or metaphor. I tell you a lot of wonderful things about the things I like and I can probably make you like those things. When people begin to talk to me, I begin to get interested and can latch on to a subject and we can talk about that. How am I supposed to know that I’m boring you? So in the end, people stop talking to me because I bore them, and I drift back into a world of fantasy and chewing on my fingers. It takes moving into the new campus to get the support I need. Working within the middle school, as it was known, was the school councillor, Mr Z. Mum had already been introduced to him and brought with her a veritable folder of reports from all those psychologists from years before. He took one look, said ‘Yes, it was Asperger’s’, and he would do something about it. I was taken out of school as Mr Z addressed my class and informed them all of my condition and why it would cause me to act the way I did. He told them that I would continue to burrow into my shell if I wasn’t approached and talked to. I think he was right to do this, and at no point did I feel betrayed. A boy talked to me one day. He had friends with him. They were like me – the kind of types who could share my interests. I approached with caution. He didn’t ask for my money. Approaching even more, I began to talk. The students listened and talked back. They were interested and asked about what I liked. We talked about music and they said they could catch the bus I catch. I talked later to Mr Z and he was impressed with my confidence and saying I was still friends with the group and was making more friends in other groups. I would not have made it that far without support from him and other staff at school. I am still not comfortable with making new male friends, but I am close friends with those I befriended at school. This is why there ought to be training for teachers in recognising and supporting students diagnosed with autism. With support, I gain the confidence to make my own decisions. I become responsible.

33. Preventing catastrophe: the welfare state and disaster risk for people with disabilities Zachary A. Morris

INTRODUCTION If the dominant social risks of the late 20th century were rapid technological change and the development of the post-industrial labor market, the first few decades of the 21st century have been defined by the calamites of climate change, the COVID-19 pandemic, and armed conflicts. Whether a person with a disability is especially endangered by such calamities depends on a number of factors at both the individual and societal levels (Smith, Jolley, & Schmidt, 2012). At the individual level, a person’s own particular needs place some people at greater risk than others. The United States Global Climate Change Research Program (2016), for instance, attributes the increased risk of extreme weather for people with disabilities to their specific functional needs, their higher likelihood of depending on caregivers, and their reliance on medical equipment that could become inoperable during a disaster event. But the disaster risk for people with disabilities is also greatly influenced by factors at the societal level. Vulnerability to a Category 5 hurricane can increase exponentially for people with disabilities who live in substandard housing, are too impoverished to afford generator power, or who are unable to access emergency transportation. Unlike individual factors, which are rooted in a person’s specific mental or physical impairment, societal-level risk factors result from discrepancies of power, structures, and resources which can impact one’s ability to prepare for, adapt to, and recover from a disaster event (Wisner et al., 2003). A societal view of disaster risk thus questions the idea of disaster events as “natural” occurrences stemming from uncontrollable external sources. Indeed, much like the social model of disability challenges the medical model of disability by bringing attention to how barriers encountered in society produce disability, a societal view of disaster risk similarly problematizes the “naturalness” of disasters. As Hemingway and Priestley (2006, p. 58) remark: “just as disability is not the inevitable outcome of functional impairment, human ‘disaster’ is not the inevitable outcome of natural ‘hazard.’” This chapter analyzes disaster risk for people with disabilities from a societal perspective. It focuses on the role of the welfare state in disaster risk prevention and as a central tool for maintaining human rights in the disaster context. When the welfare state is noted in the disaster risk literature it is typically viewed not as an upstream protector from disaster risk before the hazard strikes but as a means of post-disaster support (see, for example, Hallegatte et al., 2020). It will be argued here, however, that the welfare state also plays a critical upstream role in disaster risk prevention. Poverty, for example, is frequently identified as an underlying risk factor during a disaster event (Hallegatte et al., 2020). But the role of the welfare state, with its many programs that protect people from poverty (Brady, 2009), including many people with disabilities, is often overlooked. Moreover, the disability policy literature primarily focuses on the impact of the welfare state on social inclusion and the protection of living standards 389

390  Research handbook on disability policy but typically neglects how advances in these important policy objectives also impact disaster risk. The central contention of this chapter is that the welfare state, as a vehicle for social protection and as a guarantor of human rights, plays a critical role in the shaping of disaster risk vulnerability for people with disabilities. While the focus of this chapter will concern welfare states in the Global North, countries in the Global South also administer welfare states that greatly impact persons with disabilities (Mitra, 2006b). And thus much of what will be argued will also be of relevance to the Global South. There is also great variation in the levels of social protection provided to people with disabilities across welfare states (Morris, 2021). Though attention will be paid towards these cross-national differences, the objective will be to illuminate the kinds of resources and capabilities that all kinds of welfare states can provide to reduce disaster risk. The chapter is structured as follows. First, definitions for the “welfare state” and “disability” are provided. This is followed by a discussion of social vulnerability theory which provides the theoretical framework for understanding the role of the welfare state as a disaster risk mitigation device for people with disabilities. Next is an analysis of specific kinds of welfare state interventions and how they mitigate disaster risk, and finally there is a conclusion noting the implications of this argument for contemporary policy debates.

DEFINING THE WELFARE STATE AND DISABILITY As discussed here, the welfare state refers to governmental systems of social protection that promote a person’s “right to a modicum of economic welfare and security to the right to share to the full in the social heritage and to live the life of a civilized being according to the standards prevailing in the society” (Marshall, 1964, p. 79). The welfare state thus refers to both the providing of income support and services, and the administration of legislation all designed to enable people with disabilities to achieve their economic, social, and human rights by promoting equality relative to those without disabilities. An elusive concept to define and measure, Barr (1992) argues that the welfare state attempts to accomplish its goals through four different types of interventions: (1) Regulations that relate to quality, such as laws ensuring hygiene in food and fairness in access to jobs, quantity, such as laws setting job quotas for employers to hire people with disabilities, and price, including laws that regulate the price for needed disability-related goods and services; (2) Price subsidies that lower the cost of items and provide opportunities for people with disabilities to purchase needed goods and services on the market; (3) Public production that provides a supply of needed goods and services; and (4) Income transfers to smooth consumption and ensure living standards are maintained and social rights realized for people with disabilities through disability benefits, extra cost supplements, or self-directed long-term care funding. There are numerous rights codified within the Convention on the Rights of Persons with Disabilities (CRPD) that the welfare state upholds, including the right to standards of health (Article 25), to attain and maintain maximum independence (Article 26), to work on an equal basis with people without disabilities (Article 27), and to an adequate standard of living and to social protections (Article 28). Like the welfare state, disability is also an elusive concept to define. The International Classification of Functioning, Disability and Health (ICF) defines disability as the dynamic interaction between a person’s health, including mental and physical chronic conditions, and the contextual factors that limit a person’s ability to participate fully in society (WHO, 2001).

Preventing catastrophe  391 The CRPD similarly views disability as an “evolving concept” but one that “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (United Nations, 2008). Disability is thus viewed not as a personal attribute but as a part of the human condition that can be improved by addressing the environmental barriers in society that restrict the full participation of people with disabilities (WHO, 2011).

SOCIAL VULNERABILITY THEORY AND DISASTER RISK Though one may assume that naturally occurring environmental hazards affect all people equally, the evidence suggests the opposite. As indicated in a wealth of studies across the world, environmental hazards, such as wildfires, heat waves, hurricanes, and pandemics, disproportionately impact people with disabilities (United Nations, 2020; Stough & Kelman, 2018). The COVID-19 pandemic, moreover, poses a biological threat to all humans but severe illness and mortality from COVID-19 are disproportionately experienced among marginalized populations, including racial and ethnic groups, sexual and gender minority populations, and people with disabilities (Ruprecht et al., 2021; Turk et al., 2020). Adults with intellectual disabilities in the US are five times more likely to experience mortality from COVID-19 compared to those without intellectual disabilities (Gleason et al., 2021). The disproportionate effects of the pandemic on people with disabilities is no aberration. Indeed, similar disparities have been identified in the impact from hurricanes, tsunamis, fires, floods, droughts, and the disasters stemming from armed conflicts and war (see Thomas et al., 2013; Stough & Kelman, 2018; Crock, Hart, & McCallum, 2014). Social vulnerability theory posits that these disparities arise not from individual factors but from differences in life circumstances and opportunities at the societal level. For example, the higher risk for COVID-19 contraction and mortality among racial and ethnic minority groups in the US arguably stems from systemic racism that yields an increased likelihood of living in poverty and substandard housing, inequities in access to health care, and a higher risk of underlying medical conditions (Center for Disease Control and Prevention, 2020). In a similar way, people with disabilities may also be disproportionately vulnerable to disaster risk due to systemic forms of discrimination and social exclusion. People with disabilities are significantly more likely to experience poverty, deprivations, and other hardships, are far less likely to be employed, and are more likely to experience employment and housing discrimination (WHO, 2011; Verhaeghe, Van der Bracht, & Van de Putte, 2016). These disadvantages create conditions that reduce the ability to prepare for, adapt to, and recover from disaster events. Disability, furthermore, can often combine with other disadvantaged social categories (i.e. race, poverty status, gender minorities), and thus create a “layering” of vulnerability that increases the magnitude of the disaster risk experienced (Peek & Stough, 2010). The Pressure and Release and Access Models of Disaster Risk Arguably the most robust theoretical account of social vulnerability theory is advanced by the “Pressure and Release” (PAR) model of disaster risk (Wisner et al., 2003). In the PAR model, disaster risk is understood as the interaction between a hazard, such as an earthquake, hurricane, or virus, and a degree of vulnerability. Vulnerability is further modeled as stem-

392  Research handbook on disability policy ming from inequities in a society’s political economy that limit access to power, structures, and resources, such as those provided from the welfare state, and from the impact of political and economic ideologies. These root causes, in turn, impact the availability of resources, leading to unsafe conditions and ultimately vulnerability to mortality, injury, or other forms of devastation. The PAR model provides a sequential framework for understanding how the pre-conditions for a disaster surface, and highlights that addressing the societal root causes is the optimal intervention point for reducing disaster risk. The authors of the PAR model further suggest that it alone is insufficient for understanding the disaster risk experience, as it “does not provide a detailed and theoretically informed analysis of the precise interactions of environment and society at the ‘pressure point’” (Wisner et al., 2003, p. 87). The authors thus put forward an additional theoretical framework, the “Access model,” to explain at the micro-level how vulnerability surfaces and why it varies across individuals and households. Here we find a more direct pathway for understanding the role of the welfare state as a provider of access to resources that serve to mitigate disaster risk. Access is defined in this model as the ability “to use resources which are directly required to secure a livelihood in normal, pre-disaster times, and their ability to adapt to new and threatening situations” (Wisner et al., 2003, p. 85). Examples of such resources include flood protection, storm shelters, and enforcement of building regulations. We can think of the welfare state as a central provider of resources, including access to income support, health care, safe housing, protective equipment, secure jobs, and other protections in the pre-disaster society that provide protection against hazardous events. For people with few resources or those who require greater resources than others to achieve their living standards (often this includes people with disabilities), a welfare state can provide the means to a safe environment and can help ensure access to vital resources. The welfare state also plays a central role in the response to and recovery from a disaster event. Resources provided by emergency management services, for instance, can be viewed as a form of welfare state intervention adapted to a crisis at hand. The goal of such interventions is to maintain access given the dynamic challenges that often occur during and after hazardous events. Accomplishing that goal may be challenging, however, as, at the “pressure point” of such an event, there is often a breakdown of pre-existing services and social protections. An electricity outage, for example, can threaten the health care of someone on dialysis. Transportation systems can collapse creating new barriers for evacuation for people with mobility impairments. In these situations, the welfare state must work to ensure the continuation of access by providing the goods and services needed in this new context. Emergency management authorities may be required to install portable generators for those requiring dialysis and create new forms of accessible transportation for those who cannot access public transit. A multitude of resources, from the distribution of food and medications to providing accessible shelters and functioning assistive technologies, may be needed in response to the acute needs that occur in a disaster event. Understanding these needs and evaluating their effectiveness are critical to ensuring a well-functioning welfare state that provides protection from disaster risk. The Capability Approach and Disaster Risk for People with Disabilities The Capability Approach (CA) provides an additional model for understanding both the social vulnerability of people with disabilities to disaster risk (see Mitra, 2006a; Ton et al., 2019;

Preventing catastrophe  393 2020) and the role of the welfare state as a protective shield against disaster risk. In the CA approach, disability is defined as the deprivation of capabilities that result from an interaction among an individual’s personal characteristics (e.g. their impairment), the availability of resources (e.g. income, health insurance, disability-related goods and services), and the environment (e.g. physical accessibility, societal stigma, the economy) (Mitra, 2006a, p. 237). A key insight of the CA relevant to our discussion is that well-being should be considered not solely in terms of resources received but also with concern to the practical opportunities or capabilities the person has to achieve their desired state in the environment. The CA provides specific attention to the way environmental barriers can inhibit the conversion of resources into capabilities, and, on the other hand, how certain factors can enable the conversion of resources into capabilities. For example, a person with a mobility impairment may qualify to receive a housing subsidy but that subsidy will have little value if that person is unable to convert the subsidy into actual housing due to the unavailability of accessible housing or because landlords discriminate against tenants with disabilities. Yet, if that housing subsidy is provided with a guarantee of accessible housing and housing discrimination laws are enforced then the person with disabilities is capable of fully using the subsidy. With respect to this conversion challenge, Ton and colleagues (2019, p. 16) argue that “in order to address the inequality or deprivation of PWD’s [people with disabilities] capabilities in the face of disasters, it is critical to look at not only the space of ‘resource’ but also the spaces of ‘conversion factors’ and ‘structural forces’ that shape the availability and accessibility of resources and conversion factors.” Thus, the CA concerns the need to evaluate the role of the welfare state as more than simply a resource provider but also as a conversion factor. A successful welfare state should both provide resources and also work to remove barriers that stand in the way of a person with a disability from using those resources to achieve valued capabilities in a disaster event. If the PAR and Access models further our understanding of how the welfare state provides access to resources that can mitigate disaster risk, the CA model highlights the barriers people with disabilities experience converting such resources into desired capabilities. The importance of evaluating the welfare state by way of its practical impact on people is consistent with Esping-Anderson (1990), who argued that welfare state spending was “epiphenomenal to the theoretical substance of welfare states” (Esping-Andersen, 1990, p. 19). Or, in other words, the extent to which a government spends on social protective schemes is of secondary importance to the ability of a person to obtain a decent standard of living. Thus, a welfare state designed to serve as an “enabling conversion factor” (Ton et al., 2019, p. 13) must both provide sufficient material resources and remove societal barriers that inhibit the ability to convert those resources into desired protections, including those needed in the tumultuous moments of a hazardous event. In addition to the conversion factor, a second key idea of the CA important for evaluating the role of the welfare state as a disaster risk reduction device is the need for incorporating the meaningful participation of people with disabilities into the design of welfare states. As Ton et al. (2019) argue, to promote the capabilities of people with disabilities in a disaster event, it is critical to provide opportunities for people with disabilities to engage in policy making and to hold power over decisions influencing their well-being and safety. This participatory element is essential because participation is a valuable function in itself desired by people with disabilities. A 2013 UN global survey of people with disabilities found that more than half of respondents expressed a desire to participate in community disaster management and

394  Research handbook on disability policy risk reduction processes (UNISDR, 2014). Creating meaningful channels of participation can also serve as a means for identifying both the needs and resources required by people with disabilities before, during, and after a hazardous event and the potential barriers that may impede the conversion of resources into desired capabilities (see Ton et al., 2019). Thus, in the CA approach, people with disabilities should be actively consulted on the kinds of barriers experienced and the resources needed to overcome those barriers to achieve desired outcomes, including disaster risk preparedness.

MECHANISMS LINKING THE WELFARE STATE TO DISASTER RISK PREVENTION Thus far, social vulnerability theory has been identified as a key framework for understanding how the welfare state matters for disaster risk prevention for people with disabilities. The PAR, Access, and CA models were identified as formalized theoretical accounts that highlight both the importance of resources (PAR and Access) and the need to convert those resources into desired protections in a disaster event (CA). We further identified through the CA model that the participation of people with disabilities in the design of welfare states is also critical. In this section, the specific kinds of welfare state interventions that can provide protection from disaster risk and that can promote human rights are profiled. In Table 33.1, examples are given for each of the four intervention types of the welfare state as identified by Barr (1992), with consideration given to the kinds of resources provided, how the intervention may be adapted in the disaster context to provide inclusive social protection for people with disabilities, and the standard to which the welfare state should optimally perform to meet the definition of an enabling conversion factor. Regulations Regulations represent a central social policy mechanism of the welfare state with great relevance to disability policy and disaster risk. It is useful to distinguish between three kinds of regulations (Barr, 1992). The first concerns regulating “quality” such as the state of laws pertaining to the hygiene of food and equal employment opportunity in the labor market. This idea of quality regulation includes, for example, civil rights protections for people with disabilities that protect from job discrimination by employers and housing discrimination by landlords. At the core of the CRPD is the idea of the need to transition from a medical and charitable model of social protection for people with disabilities to one which promotes active citizenship and social inclusion (Degener, 2016). Regulations that provide protections against employment and housing discrimination and that enforce reasonable accommodation standards represent key ingredients to this end. Yet, absent effective monitoring, compliance, and enforcement, regulatory approaches often prove insufficient for achieving social inclusion. Despite laws guaranteeing access to reasonable employment accommodations in the US, for example, less than 60 percent of individuals with disabilities receive needed accommodations in the workplace (Maestas, Mullen, & Rennane, 2019). Regulatory failures can magnify the experience of disaster risk. In testimony to the US Congress on the impact of Hurricane Katrina on people with disabilities, the Executive Director for the National Spinal Cord Injury Association provided an account of a quadriplegic

Preventing catastrophe  395 Table 33.1 Welfare state intervention Regulations

Price subsidies

Public production

Income transfers

Examples of welfare state interventions and their impact on the disaster risk of people with disabilities Resource provided Laws guarantee accessibility and non-discrimination of people with disabilities. Subsidized disability-related goods and services, including medical assistance, pharmaceutical drugs, and assistive technologies. Direct provision of transportation services, assistance technologies, public housing, and other in-kind goods and services. Provide income support benefits, including disability benefits, caregiver allowances, and other income subsidies

Adaptation for emergency response Maintain accessibility and prevent discrimination in a disaster context. Provide subsidies to people with disabilities to purchase disability-related goods and services needed in a disaster context. Provide disability-related goods and services needed in a disaster context.

Provide additional income needed by people with disabilities to purchase goods and services and respond, adapt, and recover from hazards.

Standard to achieve conversion factor Discrimination laws and regulations are actionable and enforced. People with disabilities are aware of and able to access subsidies which are generous enough to reduce the extra costs of living. People with disabilities are aware of and able to access publicly provided goods which are generous enough to reduce extra costs of living. People with disabilities are aware of and able to access income transfers generous enough to achieve social rights.

Note: Author’s table in accordance with the four policy interventions of the welfare state described by Barr (1992).

woman who, due to the inaccessibility of the public transit system in that city, was unable to evacuate prior to the storm and drowned in her home. As Marcie Roth noted: “The very same paratransit system that people can’t rely on in good weather is what was being relied on in the evacuation” (Powell & Gilbert, 2006, p. 8). For regulatory policies to successfully serve as conversion factors that prevent disaster risk they must anticipate the needs of people with disabilities in the design, monitoring, and enforcement of laws, including in the design and operation of emergency response operations. The second form of regulatory policy concerns those related to “quantity.” According to a recent International Labour Organization (2019) study, more than 100 countries currently require employment quotas for the hiring of people with disabilities. Like regulations barring discrimination, disability employment quotas are in accord with the CRPD which obligates countries to safeguard and promote the realization of the right to work among people with disabilities by employing persons with disabilities in the public sector and promoting employment in the private sector. In enhancing employment, these forms of regulations can improve the financial capability of people with disabilities to, for example, afford supplies to cope with a disaster event. The final type of regulation identified by Barr concerns those governing the price of goods and services. There are at least two forms of welfare state price regulation that have a bearing on the welfare of people with disabilities. The first is price control for disability-related goods and services. For example, many countries regulate the price of pharmaceutical drugs to ensure the affordability of medication for people with disabilities. In countries such as the US, where price controls are less common, drug prices are, on average, nearly four times higher than the combined average of 11 other high-income countries (Ways & Means Committee, 2019).

396  Research handbook on disability policy Many European countries, moreover, set out-of-pocket limits on assistive technologies for people with disabilities (Panteli et al., 2018). Another form of regulatory price control are laws requiring employers to pay a minimum wage. People with disabilities are more likely to work in minimum wage jobs compared to those without disabilities (Friedman & Rizzolo, 2020), thus changes to the minimum wage, and their enforcement, will have an inordinate effect on people with disabilities. In some countries, such as New Zealand and the US, employers can be exempted from the minimum wage requirements for workers with a disability, whereas in other countries, such as France and the UK, sub-minimum wages are viewed as discriminatory and out of compliance with the CRPD. Both lower drug costs and higher wages are critical to allowing people with disabilities to prepare for disaster risk and obtain the needed goods and services in the pre-disaster society that then translate into protections during and after a disaster event. Price Subsidies Providing subsidized goods and services to people with disabilities is an additional social policy intervention that promotes societal inclusion. Price subsidies include, for instance, free or reduced costs for transportation, health insurance, and medical and assistive equipment. Like price regulations, price subsidies attempt to lower the cost of needed goods and services but provide fiscal support as opposed to price controls. For instance, in the US, those with disabilities who qualify for the public Medicare health insurance program can receive a subsidy to their prescription drug coverage of about $5,000 per year (SSA, 2021). Many countries, including Colombia, the Netherlands, and the US, subsidize health insurance coverage for those with low incomes, which benefits people with disabilities who are disproportionately in that category (WHO, 2011). Countries also provide subsidies for people with disabilities in the form of concessions, such as free public transportation, subsidized housing, and access to sign language interpreters (Mont & Cote, 2020). In working to ensure the health and equal participation of people with disabilities in the pre-disaster context, subsidies can serve as an essential mitigator of disaster risk. Access to public transportation, a fully stocked medical cabinet, and assistive technologies are, after all, something to be desired in the event of an environmental hazard. Barriers to the access and utilization of subsidies, however, can limit their ability to provide that protection. Free or reduced costs for public transportation will only be of use to people with mobility impairments if the transportation system is physically accessible. Subsidies for a car or home modification will be useful only if people with disabilities are aware that the subsidies exist and they are generous enough to make the purchase affordable. Likewise, health insurance is of limited value if health care providers refuse to accept that insurance due to low payment rates or do not provide services where a person with a disability lives.

PUBLIC PRODUCTION Where the regulation or subsidy of needed goods and services in the market does not meet the requirements of people with disabilities, the welfare state can directly provide those items. A recent analysis of five European countries found that assistive technologies including mobility, household, respiratory, and audio, visual, and communication aids, are commonly

Preventing catastrophe  397 provided by the state to people with disabilities with little or no out-of-pocket costs (Panteli et al., 2018). In a disaster where evacuations are required, electricity is cut off, and communication systems are damaged, being provided with that technology as well as with the funds for its maintenance and functioning is critical to protecting the independence of people with disabilities and ensuring their safety (McSweeney-Feld, 2017). Providing housing is an additional intervention of the welfare state and of obvious importance in a disaster event, such as a hurricane, earthquake, or tornado, where substandard housing or homelessness greatly increases risks. And the right to access independent living in the community, a basic right codified in the CRPD, implies more than just access to affordable or free public housing in the community but also to personal assistance services, assistive technologies, and other supports a person needs to live in the community. Despite efforts to publicly provide professional caregiving and housing assistance to people with disabilities, substantial needs still remain. The Home and Community-Based Services waiver program in the US, for example, provides comprehensive long-term care and personal services for low-income people with disabilities who would otherwise require nursing home care. However, due to large funding gaps, even those found eligible for these waivers encounter wait times that average 39 months before receiving the needed services (Musumeci, Chidambaram, & Watts, 2019). The COVID-19 pandemic further demonstrated that inadequate housing for people with disabilities can have direct consequences. Many people with disabilities, who would prefer to live independently but who do not have the support and services to do so, live in congested institutions that have experienced disproportionately higher rates of virus infection (United Nations, 2020). Consequently, the mortality rate from COVID-19 among people with disabilities in institutional settings is exceedingly high (Landes et al., 2020). Income Transfers Income transfers are designed to smooth consumption patterns, uphold living standards, and provide financial security, social inclusion, and independence for people with disabilities. One can distinguish three types of income transfer policies relating to disability policy: income-replacing disability benefits, supplemental extra cost cash benefits, and cash-like benefits that can be self-directed for caregiving costs or to use for the purchase of essential items. Income-replacing disability insurance benefits are available to those with disabilities and a limited ability to engage in paid work and represent one of the most important program areas of the modern welfare state. The Organisation for Economic Co-operation and Development (2021) countries spent, on average, 2 percent of Gross Domestic Product on disability-related income-replacing programs in 2019. Though these benefit programs lift millions out of poverty each year, they do not necessarily guarantee a reasonable standard of living for beneficiaries with work-disabilities. A recent study found that across nine European countries disability benefit recipients were, on average, more than twice as likely to experience material deprivations such as difficulty affording groceries, unexpected expenses, and heating their homes compared to adults with similar demographic profiles but without work-disabilities (Morris, 2021). The limitations of existing disability benefit programs to ensure a reasonable standard of living are particularly notable in a disaster context where financial security can determine one’s ability to adapt to and recover from a disaster event (Boustan et al., 2017; Morris, Hayward, & Otero, 2018).

398  Research handbook on disability policy An additional form of income transfers are cash supplements to help cover the extra costs of living with disabilities. It was recently estimated that, across 15 European countries, older working-age adults with work-disabilities, on average, required 44 percent more income to make ends meet relative to older adults with similar incomes and demographic profiles but without work-disabilities (Morris & Zaidi, 2020). The additional income required of people with disabilities is a result of the many direct out-of-pocket expenses that only people with disabilities incur. To help reduce these costs, countries often provide supplemental cash allowances. For example, in Britain, the Personal Independence Payment program provides cash assistance to people with disabilities to assist with their daily living and mobility-related costs. Unlike income-replacing disability benefits available to those with demonstrated work-disabilities, these cash supplements are available to people with disabilities whether or not they are working. A third type of income transfer concerns cash-like benefits. These kinds of payments are often made in lieu of in-kind support and often come with conditions on their use. For example, people with disabilities may be entitled to cash benefits that can only be used to purchase food items, assistive technologies, or other items needed to achieve employment-related accommodations. Another form of cash-like support includes self-directed services. Self-direction allows people with disabilities to control and manage their own care-related budgets and to select services they determine to best meet their needs. There is robust evidence that these programs expand access to care, reduce unmet need, and increase satisfaction with services (Carlson et al., 2007). Income transfers provided in a pre-disaster context, however, may prove insufficient in a disaster for people with disabilities who may incur substantial extra expenses for disability-related items such as infrastructure repairs or stockpiling medications. Moreover, a breakdown in care service due to a disaster may require a family member to forego work to provide care and thus jeopardize a substantial source of family income. The aftermath of a hazard is also likely to lead to an economic downturn, when people with disabilities, who already experience disadvantages in the labor market, are often more likely to lose their jobs (Emerson et al., 2021). An inclusive disaster response may thus require additional income support, over and above what may be available through income transfers, to help people with disabilities cope with these financial shocks.

DISASTERS AND DISABILITY POLICY This chapter analyzed disaster risk for people with disabilities from a societal perspective and argued that the welfare state needs to be recognized as a pivotal protector against that risk. Through its diverse instruments of regulation, subsidies, public production, and income transfers, the welfare state serves as an essential source for the fulfillment of the social, economic, and human rights of people with disabilities. The fulfillment of these rights in the pre-disaster context should be viewed as vital for reducing the risks likely to be encountered by people with disabilities after a disaster strikes. Yet, a disaster event may threaten the effectiveness of even a well-designed welfare state intervention. Public transportation systems designed to maximize accessibility are of little use if they do not function during a 100-year storm. Medication subsidies may help a person with a disability meet their everyday needs but stockpiling large quantities of these drugs in

Preventing catastrophe  399 anticipation of a disaster is a different kind of challenge. People with disabilities may also, in the midst of a disaster, experience unexpected additional expenses for transportation, infrastructure, or caregiving services. Welfare state programs and services could thus be suitably protective during a pre-disaster period but prove woefully inadequate in the context of a disaster. What is needed, therefore, is a dynamic model of welfare state interventions that maximizes the inclusivity and social protection of people with disabilities before, during, and after a disaster event: a model that allows for inclusive emergency preparedness in which the protections provided by the welfare state in the pre-disaster society can be maintained and adapted in the context of a disaster event. The welfare state, and disability policy specifically, deserves greater attention in the policy debate surrounding the reduction of disaster risk. As welfare states cope with aging populations and the likelihood of fiscal austerity, they will face increasing pressure to scale back disability policies, particularly cash benefits and long-term care supports. Recognizing that these programs provide critical protection in the face of disaster events should factor into policy discussions regarding their reform. Failure of welfare state policies to advance the full social inclusion of people with disabilities should also be understood as increasing their risks in the event of a disaster. For the welfare state to optimally protect against disaster risk it must do more than pass disability policies in the form of laws, regulations, and budgets. It must ensure that people with disabilities can convert those resources into desired protections from disaster risk. It must guarantee that these policies are well targeted towards the needs of people with disabilities, that they are both enforceable and enforced, that they are accessible to all people with disabilities, and that they are generous enough to ensure the full social inclusion of people with disabilities. In order to reach this objective, the advocacy and participation of people with disabilities, who are uniquely positioned to understand their needs, will remain critical to reducing the risk of disaster through the mechanisms of the modern welfare state.

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34. Strategic human rights-based policy reforms for making Australian universities equally accessible to students, staff, and faculty who are Indigenous people with disability1 Sheelagh Daniels-Mayes, Paul Harpur and Michael Ashley Stein

INTRODUCTION Australia has been inhabited by Indigenous people with sophisticated ways of knowing, being, and doing for thousands of generations (Martin, 2003; Pascoe, 2014). The invasion and onset of colonization in 1788 by the British did not entail the superiority of numbers but rather “involved structural, cultural, economic and political domination” (Meekosha, 2011, p. 671). From the initial encounters between Indigenous people and colonizers, through more than two centuries of government legislation and policies, amidst scientific racism that equated indigeneity with being less than human, Indigenous people have been discriminated against, denied human rights, and deprived of the opportunity to participate in Australian society as equal citizens (Daniels-Mayes, 2020). Dispossession from land, disease, frontier violence, environmental devastation, and pervasive racism—each a characteristic of colonization—have contributed to the continued disablement of Indigenous people and remain as collective stressors (Avery, 2018; Gracey, 2014; Hollinsworth, 2013). Prior to colonization, Indigenous languages had no precisely translatable word for disability or other ‘deficit terms’ to indicate what a person lacks (Heath, 2017). Worimi man Damian Griffis, CEO of the First Peoples Disability Network, believes “the treatment of disability in Aboriginal culture is more inclusive” (Heath, 2017, p. 1). In his view, disability is discussed in non-judgmental terms related to impairment; rather than labelling conditions as shortcomings, the perception “may be that Uncle really doesn’t move too well or Aunty doesn’t hear too well” (Heath, 2017, p. 1). Hence, in Indigenous terms, Sheelagh’s vision impairment has been variously referred to as ‘her eyes don’t work too good’, ‘bung eyes’, or ‘eyes are broke’. It is a statement of fact, an identifier of person rather than a moral pronouncement embedded in dominant Western medical models of disability wherein individuals are defined by deficits, inabilities, and limitations. Western narratives too often serve to exclude people with disability from social opportunities like education. Additionally, the Western disability category gives little thought to the intersection of other socially constructed identities and experiences such as ‘race’ and culture (Harpur & Stein, 2018a). For Indigenous people, whose cultural practices are based on inclusion, respect, reciprocity, and responsibility, the concept of disability as deficiency is a direct by-product of colonization. The language of disability, including diagnostic labelling, is a dialectic that Indigenous people have had to learn out of necessity in order to navigate 402

Strategic human rights-based policy reforms  403 Western disability systems intended to provide support and improve quality of life (Avery, 2018). Persons with disability in Western cultures have continually been positioned as “different, deviant, even undesirable, and are subsequently treated as inferior” (Carling-Jenkins, 2014, p. 1). Moreover, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Disability Royal Commission) established by the Australian government has observed that “compared to the general population First Nations people with disability are at greater risk of experiencing harm” by being denied services such as access to health, are exposed to physical violence, and continue to be removed from their families against their will (Disability Royal Commission, 2020, p. 5). Australian universities have a unique opportunity and responsibility to use their privileged position to transform themselves equitably, including access by students, staff, and faculty, and the wider communities in which they exist (Daniels-Mayes, Harwood, & Murray, 2019). However, despite Australia’s ratification of the Convention on the Rights of Persons with Disabilities (CRPD) and the promulgation of national university Disability Action Plans (DAP) and Indigenous Reconciliation Action Plans (RAP), Indigenous Australians with disability continue to lack equal access to higher education as students, staff, or faculty. We argue that the marginalization of these individuals in higher education is worsened by the absence of coherent policies that recognize, respect, and respond to the intersectionality of identity arising from both being Indigenous and having disability. Consequently, we advocate for Australian universities to advance from merely tolerating differences to embracing inclusion and social justice exercise by Indigenous people with disability. To illustrate these arguments, throughout the chapter we weave in the narrative of the lead author, a Kamilaroi woman with a vision impairment who teaches and researches in Aboriginal education, Indigenous studies and methodologies, and Critical Access Studies, and is a disability scholar and activist. Whilst this chapter focuses on the intersection between indigeneity and disability, the approach we advance has wider policy implications for individuals with other intersectional identities such as gender, and beyond the field of higher education. The chapter proceeds as follows. Part I discusses the experiences of Indigenous people with disability within higher education in Australia by drawing on scholarship and the lived experience of the lead author. In Part II we provide a summary of the scope and limitations of current policies and strategies surveyed from Australian universities. Part III provides forward-looking recommendations for breaking down the silos of Australian university policies and strategies. We conclude with a few forward-looking thoughts.

I.

EXPERIENCES OF INDIGENOUS PEOPLE WITH DISABILITY AT AUSTRALIAN UNIVERSITIES

Indigenous people with disability experience dual discrimination but live in a world which prefers engaging separately with each attribute. While Indigenous people with disability desire to contribute and lead inclusion processes, they are often exhausted by systems that inefficiently utilize their expertise. Australian universities must increase their preparation in order to include Indigenous students, staff, and faculty with disability.

404  Research handbook on disability policy A.

Living with both Indigeneity and Disability within Systems Focusing on Single Attributes

The Australian Bureau of Statistics (2019) estimates that 25% of Indigenous people have a disability. Such individuals are among the most marginalized and silenced in Australia, and are relatively over-represented as far as disability or chronic health condition incidence (Australian Bureau of Statistics, 2019). Notably, Indigenous people with disability have a “dual status,” referred to by some as “double discrimination” (First Peoples Disability Justice Consortium, 2016, p. 16). Indigenous scholar Scott Avery (2018), who lives with disability, argues that Indigenous people with disability are frequently exposed to various forms of institutional, systemic, and societal discrimination. In his view, these harms can have a cumulative impact and manifest into “apprehended discrimination” whereby an expectation of prejudice leads individuals to avoid situations because they might be exposed to discrimination (Avery, 2018, p. 102). Furthermore, Indigenous people with disability live with the historical legacy of both colonization and ableism. Sheelagh shares that: In muddling through the attributes of Aboriginality and disability, she realizes that she has been twice impacted by histories of genocide, stolen children, institutionalization, exclusion, discrimination, low expectations and trauma through racist and ableist policies, legislative frameworks and practice. Many of which continue into the present.

Indigenous people with disability need to constantly wrestle with embedded ableism and racism, and the trauma these engender in their everyday lives, including societal structures beyond the university campus. The medical model of disability presumes that “people with disability are viewed as different, as exceptions, as other, requiring care, treatment and protection within social welfare and health regimes as a way of dealing with their ‘special’ needs” (Kayess & Smith, 2017, p. 7). In this quote, ‘disability’ could readily be replaced with or placed alongside ‘Indigenous’, demonstrating the duality of discrimination, stress, inequity, and marginalization frequently experienced by Indigenous people with disability. Turning to the unique responsibility of universities, education plays an important role in society by increasing opportunities and assisting individuals and communities to meet their needs and achieve their aspirations (Harpur & Stein, 2019; Harpur & Stein, 2018b). Education itself, however, has been the site of prejudice and discrimination for Indigenous Australians and persons with disability alike (Burridge & Chodkiewicz, 2012; Moodie, Maxwell, & Rudolph, 2019), with segregated and inferior education historically being the norm for both under-served groups (Graham, Sweller, & Van Bergen, 2010; Burridge & Chodkiewicz, 2012). While the number of Indigenous students has been steadily increasing since the first known Indigenous person graduated from an Australian university in 1966, Indigenous student participation in higher education remains significantly below the population parity rate (Wilks & Wilson, 2015). Data for Indigenous students with disability in higher education is inconsistent or missing (Fleming & Grace, 2017). These students can be reluctant to self-disclose their indigeneity and/or disability for a myriad of reasons, impacting on accurate data gathering. Nonetheless, it is generally agreed that Indigenous people with disability remain under-represented in higher education (Wilks & Wilson, 2015). Obtaining data on staff or faculty who are Indigenous or have a disability is likewise fraught with difficulty. Notably, staff and faculty who can manage without workplace adjustments can

Strategic human rights-based policy reforms  405 hide their disability to avoid potential stigma (Brown & Leigh, 2018; Fleming & Grace, 2017). Reasons for this non-disclosure are complex. To begin with, anti-discrimination laws require far less of employers relative to staff and faculty than to students (Fleming & Grace, 2017). Moreover, increasing levels of precarious employment in the higher education sector can lead to a reluctance to disclose a person’s disability or request reasonable adjustments (Brown & Leigh, 2018). This is due in part to the medical model that dominates policy requiring a medicalized affirmation in order to seek and access accommodations (Price et al., 2017). For people with non-apparent disabilities, disclosure is ultimately a choice whereby they can exert control in relation to how they are perceived and treated (Stanley et al., 2011). For Sheelagh, who works with a guide dog, disability disclosure isn’t a choice. She states that: My very presence in higher education is frequently ‘epistemologically and ontologically disturbing’ as surprise and awe emerge when it is realized that I’m an academic with a ‘real’ PhD; further, that I’m Aboriginal even though I don’t ‘look it’ according to the established stereotyped image of indigeneity.

Sheelagh further explains that her Aboriginality always comes first when she fully identifies: “I’m an Aboriginal/Kamilaroi woman living with vision impairment.” Such a declaration fulfils Indigenous protocols of: ‘who are you’ and ‘where do you come from?’ (Martin, 2003). The disclosure is part of the building of trusting relationships that takes Sheelagh from being ‘Sheelagh the academic’ to ‘Sheelagh the human’. At the same time, Sheelagh has the skin colouring of her paternal Italian and English ancestors, and like many fair skinned Indigenous Australians chooses on occasion not to disclose her Aboriginality: Sometimes it’s just easier to be ‘white’, not a choice afforded to all Aboriginal people. My disability is obvious and that tends to get a lot of attention and questions. Do I have to answer the questions about Aboriginality such as ‘But you don’t look Aboriginal’ or ‘Why identify when you look white?’ Sometimes I don’t disclose because I just don’t want to deal with the dual discrimination or the ‘You are so brave/inspirational’ rhetoric that I find is commonplace and so very demoralizing.

It is often impossible or undesirable for Indigenous people with disability to compartmentalize their lived experience into legal and policy constructs that ignore intersectionality. Significantly, Avery (2015) stresses that ‘inclusive education’ as a concept for Indigenous students has salient cultural elements alongside the meaning that “‘inclusion’ has for students with disability, and that it is critical that education address both standpoints” (Avery, 2015, p. 10). Likewise, the Indigenous and disability perspectives of higher education students, staff, and faculty need to be considered for inclusion to be enacted. However, Australian universities are not yet ready, and in some cases unwilling, to provide such a system of culturally inclusive enabling education for Indigenous students with disability. Neither is higher education ready to be a place of culturally inclusive enabling employment for such individuals as staff or faculty. B.

Inefficient Consultation Processes Impact Indigenous People with Disability

As an academic, Sheelagh quickly learned that, without addressing the barriers to her disability, she could not perform her work as an Indigenous educator and researcher. In Sheelagh’s words:

406  Research handbook on disability policy In addition to my academic work, I need to problem-solve accessibility barriers, educate those around me about Aboriginality and/or disability, and do it all with politeness to ensure that everyone else is feeling comfortable. The more ‘able’ or ‘white’ I can make myself appear the better for those around me. Imagine what Aboriginal students with disability go through in such an environment.

While such advocacy can help reduce misunderstandings, it can also lead to emotional and physical strain that goes largely unrecognized (Harpur, 2014). Sheelagh explains that Indigenous culture encourages her to put community first: Although I have the right and ability to say ‘no’ to some of the demands placed on me by my disability, the Aboriginal Elders have taught me it’s not the cultural way. That is, being Aboriginal means that choices and decisions made are not just about myself but the generations to come and the generations that came before who made my life possible. It’s called ‘upriver’ thinking … what you do upriver impacts what happens down river. Saying ‘no’ to mentoring a student is not living up to the responsibility of bringing through the next generation as I have been taught is my responsibility as a privileged Aboriginal woman. Privileged in that I have an education and a job; privilege in that I have power to advocate for change.

As such, being Indigenous with its culture of inclusion, responsibility, reciprocity, and with traumas associated with colonization, means that there is an additional layer that needs to be ‘managed’ beyond academia and disability. Indigenous students, staff, and faculty with disability are continually required to juggle their needs and aspirations alongside their cultural and disability responsibilities. Indigenous students, staff, and faculty with disability can positively impact inclusion where they are included. For example, Sheelagh remembers a last-minute invitation to a meeting that was deciding, among other disability issues, whether the cost of braille signage could be justified for such low numbers of users on campus: I read braille and depend on it heavily. I argued successfully that perhaps the low numbers indicated that the university was not one of choice for braille readers. I also argued, that those few on campus who did rely on braille signage had enough to contend with without adding another environmental barrier. Imagine if I hadn’t been invited?

The balance between academic responsibility and lived experience must be addressed by universities. Problematically, however, low numbers of Indigenous people and/or persons with disability means the responsibility falls more heavily upon the few who are present and are successfully navigating the system. Universities should be including Indigenous students, staff, and faculty with disability in leadership positions and not calling upon them to volunteer their time for tasks that can be accomplished through other administrative allocation. Hence, Sheelagh has colleagues and others who reach out to her to check whether a website or document is accessible; verifying the accessibility of every poster, PowerPoint presentation, website, or physical space if necessary, but which can be accomplished as part of a general commitment to access. Moreover, Indigenous students, staff, and faculty with specific disabilities are unlikely to have expertise in inclusion for all types of impairments. Universities employ experts in various fields including information communication technologies, property and facilities management, and human resources. These experts ought to be trained in Indigenous and disability inclusion, while Indigenous staff and faculty with disability should be empowered to lead higher-level decision-making. As Sheelagh puts it:

Strategic human rights-based policy reforms  407 I am far more than an accessibility monitor, rubber-stamping toilet accessibility on campus, or for that matter stairs, lifts or signage. Far more could be achieved if my lived experience could be seen as an asset and I sat on committees that impacted on the admission of students, the hiring and promotion of staff and faculty, with disability and/or Aboriginality. Remove the silos and I would only need to be on one committee addressing systemic issues rather than taking this drip filter approach to change.

C.

Better Preparing Universities for Including Indigenous People with Disability

Universities need to find innovative solutions to overcome calcified structures and better prepare themselves to include Indigenous students, staff, and faculty with disability. Embedded racism pervades interaction with Indigenous Australians both directly and indirectly (Bodkin-Andrews & Carlson, 2016; Caruso, 2021). In addition, universities have a dark and traumatizing legacy of using Aboriginal people and/or people with disability for research fodder or as objects of curiosity (Dolmage, 2017). Strikingly, universities, and the careers that ensue once having higher education credentials, are built upon a philosophy that encourages the accentuation of ability, valorizes perfection, and stigmatizes anything hinting at perceived intellectual or physical weakness (Dolmage, 2017, p. 3). This conception wholly devalues the benefits arising from either Indigenous or disability status. University policies also fail to include Indigenous students, staff, and faculty with disability. Fleming and Grace’s (2017) survey of 17 Australian university disability units found that they struggled to respond to the needs of Indigenous students with disability. Only one-third of the disability units provided support directly to students with disability who also possessed intersecting status as Aboriginal or Torres Strait Islander peoples (Fleming & Grace, 2017). Even when supports are available, persons with disability need to manage those supports, often having to educate tasked personnel about their specific needs (Katzman & Kinsella, 2018). For example, an information and communication technology expert might be provided by a university, but might not be helpful if they are unfamiliar with disability-specific software. Sheelagh shares: I am frustrated beyond belief with people asking me to click on some icon even after I’ve disclosed my vision impairment and use of adaptive software that means I do not use a mouse but a keyboard and keystrokes to navigate the computer screen. I’ve also had enough of the exhaustion that comes with not only having to learn yet another computer program but memorize all the keystrokes needed to navigate a probably inaccessible platform.

Funding for a research or digital accessibility assistant is helpful and welcome but does not eliminate the barriers encountered. Additionally, if the funding is not continuous then the staff member or academic is continually seeking additional supports or arguing for reasonable adjustments. Universities also fail to understand the benefits associated with living with the dual identities of indigeneity and disability. These intersecting attributes are not just sites of vulnerability, but also attributes of strength. Sheelagh adamantly relates that: The strength gained from being an Aboriginal person with disability is rarely recognized. Being Aboriginal gives me a ‘soft place to land’ when life becomes a battle with the source of the battle being too often the barriers encountered due to my vision impairment. Disability gives me resilience, time management, empathy, and multi-tasking skills.

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II.

AUSTRALIAN UNIVERSITY POLICIES TOWARD INDIGENOUS PEOPLE WITH DISABILITY

There is a trend across the higher education sector to focus upon indigeneity or disability, but nevertheless fail to recognize the heightened vulnerabilities that occur when these identities intersect. Some university disability strategies provide avenues to include the Indigenous voice. A small number of universities include tentative measures in their disability strategies to promote inclusion and equity for Indigenous persons with disability. A.

Siloing Responses to Intersectionality

Universities across the globe are seeking to promote inclusive higher education by adopting innovative programming (Harpur & Stein, 2018b; Sachs & Schreuer, 2011; Smith & Stein, 2020). Yet the ‘social justice’ mantra (Wilson-Strydom, 2015, p. 143) is often not realized for Indigenous students, staff, and faculty with disability. In Australia, this is in large measure because strategies on indigeneity and disability predominately engage with each attribute separately. This siloing approach results in universities increasingly responding to the needs of those with a single attribute but largely ignoring the particular needs and aspirations of those who have intersecting sites of exclusion. This has created a policy gap into which Indigenous persons with disability are falling, occasioning their continued exclusion. Despite decades of concerted efforts to address student inequities, little consistent improvement has been made for either Indigenous or disabled people, let alone for those whose identity attributes intersect. Federal government policy seeks to address the life outcomes of Indigenous Australians by closing the gap on educational attainment, health, wellbeing, and economic positioning (Commonwealth of Australia, 2020). So, too, the Australian Disability Standards for Education which seek to provide students with disability access and the ability to participate in education on the same basis as students without disability (Department of Skills, Education and Employment, 2020). Both policy domains are, however, essentially silent as to the intersection of indigeneity and disability despite the high numbers of students whose identities straddle both categories. The systemic lack of acknowledging intersectionality is illustrated by the programming of Australia’s leading sector-wide body, Universities Australia, which has a long history in stimulating diversity. Universities Australia Women was established in 1994 and brings together Australia’s 39 comprehensive universities to promote gender equality and improve the status of women in higher education (Universities Australia, n.d.a). More recently, Universities Australia’s Indigenous Strategy obliges all 39 universities within Universities Australia to achieve important targets on Aboriginal and Torres Strait Islander student participation, success, and employment (Universities Australia, n.d.b). This strategic document does not mention disability or the impact of intersecting attributes; not surprisingly, the two reports assessing the Strategy’s implementation are similarly silent as to disability (Universities Australia, 2019). The sector-wide failure to respond to the heightened vulnerabilities of Indigenous people with disability is reflected in many university diversity and inclusion strategies. Most universities focus upon Indigenous and disability considerations but fail to address those identities when they intersect. Thus, in contemporary Australia, most universities formally acknowledge the colonial history of dispossession, genocide, and Stolen Generations by paying respects

Strategic human rights-based policy reforms  409 to the traditional owners of the lands on which universities are built (Connell, 2019; Moses, 2000), and seek to promote inclusion for Indigenous Australians (Nolan, Hill, & Harris, 2010). Although such acknowledgement is a positive development for Australian higher education, these efforts fail to acknowledge intersecting disability identity. i. Reconciliation Action Plans (RAPs) Lack of engagement with intersecting indigeneity and disability statuses is equally true for RAPs that drive a university’s contribution to reconciliation both internally and in the communities in which it operates. For the purposes of our analysis, we group all plans together and refer to them as RAPs. Leading university RAPs do not mention disability (Monash University, 2016; University of Adelaide, 2019; University of Melbourne, 2019; University of New South Wales, 2018; University of Queensland, 2019). Where universities do mention disability, such as in the Curtin University RAP, those rare references are a cross-reference to Curtin University’s Disability Access and Inclusion Plan (2017) (Curtin University, 2018, p. 9) and offer guidance on how an accessible version of the RAP can be obtained from the university (Curtin University, 2018, p. 17). RAPs thus focus on the worthy goals of redressing the impact of colonialism and promoting a more inclusive university experience, thereby offering a means of healing and achieving social justice. For example, the University of Queensland’s plan promotes healing by developing smartphone applications for each campus that highlight local Aboriginal histories, including “healing ceremonies at trauma/massacre site[s]” (University of Queensland, 2019, p. 28). This recognition of historic violence, and the impact it continues to have, helps address some of the trauma of Indigenous individuals, but it does not respond to the complex vulnerabilities experienced by Indigenous people with disability that likewise are a legacy of colonization (Hollinsworth, 2013). ii. Disability Action Plans (DAPs) University disability strategies are found in DAPs (Harpur & Stein, 2018b). These DAPs are voluntary measures under federal law, or mandated under state-based laws that require public authorities, including universities, to prepare and lodge disability access and inclusion plans. For the purposes of our analysis, we group all plans together and refer to them as DAPs. A number of DAPs progressively recognize the dual status of Indigenous students, staff, and faculty with disability. Unfortunately, such recognition does not always translate into measures to address specific needs and aspirations. For example, the Australian National University’s DAP noted that the campus was enriched by the diversity of Aboriginal and Torres Strait Islander people (ANU, 2020, p. 3), but the significance of Indigenous Australians was not addressed again in the document. Similarly, the DAPs of the Royal Melbourne Institute of Technology (RMIT, 2016, p. 2) and the University of Wollongong (UOW, 2019, p. 2) each explain that promoting the inclusion of Indigenous people forms part of their university diversity vision, then fail to address the intersection between disability and indigeneity in the remainder of the plans. Positively, DAPs by Charles Sturt University (CSU, 2020, p. 1) and the University of New England (UNE, 2020, p. 1) commence with an Acknowledgement of Country. These plans unfortunately then fail to include measures to help redress the historic wrongs by providing specific measures to support Indigenous Australians with disability. Similarly, the University

410  Research handbook on disability policy of Sydney’s DAP provides the disability-specific history of the lead author to this chapter, Dr Sheelagh Daniels-Mayes, and quotes her as saying: The [Disability Action] Plan not only demonstrates the University’s commitment to enacting change for access and inclusion, but it also gives people with disability a voice to have their human rights met. It gives me confidence at work because I know that I can use the Plan to advocate for change. Without the Plan, I know that my work success would be significantly compromised. (USyd, 2019, p. 9)

But beyond noting that Sheelagh is a Kamilaroi woman who teaches and researches on culturally responsive education for Indigenous students, the plan is silent as to the intersection between indigeneity and disability—a situation the next iteration of this plan needs to address in order to achieve social justice, equity, and inclusion. B.

Limited Voice for Indigenous People with Disability

Indigenous Australians and persons with disability each comprise a group that has had limited participation in meaningful university governance, or has been over-burdened with less salient work as discussed above. Some DAPs seek to redress this injustice. The University of New South Wales’s DAP references the appointment of Diversity Champions and the establishment of the Equity, Diversity and Inclusion Board in their plan (UNSW, 2018, p. 4). The University of Queensland DAP continues to provide an appointed Disability Inclusion Group with an extensive role in monitoring the implementation of the DAP (UQ, 2018, p. 7). The University of Queensland’s Disability Inclusion Group has been able to champion significant changes and has a strong representation of persons with disability (Harpur, 2021). C.

Recognizing the Need for Research and Innovation on Intersectionality

In contemporary times, universities produce innovation and research that can help transform society (Harpur, 2021). Some university DAPs utilize this innovation and research expertise to support Indigenous persons with disability. Murdoch University’s DAP, for example, requires it to “investigate and make available … statistics, indicating the intersection between indigeneity and disability, and provide the information to relevant internal stakeholders” (MU, 2016, p. 12). Alternatively, the University of Technology Sydney’s DAP is clearer in their use of academic research expertise, including a mandate to “explore opportunities for innovative and collaborative disability research and practice with an intersectional focus, in particular building on research in the Indigenous and disability space” (UTS, 2020, p. 14). Research and innovation will increase the understanding of the problems and solutions that arise when indigeneity and disability intersect. The outputs from such research can empower advocates and universities to better respond to intersecting inequalities that occur in both education and wider society.

Strategic human rights-based policy reforms  411

III.

AUSTRALIAN UNIVERSITIES AS CHAMPIONS OF INDIGENOUS PEOPLE WITH DISABILITY

Human rights frameworks and the Disability Royal Commission demonstrate the importance of universities mainstreaming the vulnerabilities associated with the intersection of indigeneity and disability statuses. A key measure requires the voices of Indigenous persons with disability at both the university and sector-wide levels to be privileged and empowered to disrupt overlapping structural sites of discrimination. Redressing the substantial injustices experienced by this group requires substantial research and innovation. Universities should create and fund such a transformational agenda in partnership with those with lived experience of indigeneity and disability. A.

Redressing Siloing Through Mainstreaming Intersectionality

Indigeneity, disability, and the intersection between these sites of inequality should be embedded in and embraced across higher education strategies and policies. Human rights frameworks predominately focus on one attribute; however, they also recognize the particular vulnerability when indigeneity and disability intersect (Harpur & Stein, 2018a). Notably, the UN Declaration on the Rights of Indigenous People (UNDRIP) requires that “[p]articular attention shall be paid to the rights and special needs of Indigenous ... persons with disabilities” (UNDRIP, art. 22). Harmoniously, it requires States Parties to take “effective measures to improve the economic and social conditions of indigenous persons with a disability in its implementation, including the areas of education, employment, vocational training, housing, sanitation, health, and social security” (UNDRIP, art. 22). The strong stance on intersectionality was not adopted in the contemporaneous CRPD, which only references the particular vulnerability of Indigenous people with disability in its Preamble (Harpur & Stein, 2018a). Universities should take guidance from the express recognition of the vulnerability of Indigenous people with disability adopted by the Disability Royal Commission. Its terms of reference explain that the “specific experiences of violence against, and abuse, neglect and exploitation of, people with disability are multilayered and influenced by experiences associated with” multiply intersectional identity categories “including the particular situation of Aboriginal and Torres Strait Islander people” (Disability Royal Commission, 2019a, p. 2). Accordingly, the Commission explained that it would embed Indigenous issues in all areas of its work (Disability Royal Commission, 2019b, p. 6). The Disability Royal Commission has addressed the vulnerability of Indigenous Australians with disability, both in mainstreaming their special vulnerability in issues papers such as the one on education (Disability Royal Commission, 2019c), and the one focusing on being Indigenous (Disability Royal Commission, 2020). Notably, both issue papers highlighted the failure to provide equal educational opportunities (Disability Royal Commission, 2019c, p. 9; 2020, p. 2). B.

Empowering the Voice of Indigenous People with Disability

It is critical to translate high-level statements supporting Indigenous people with disability into operational practices. Full participation of Indigenous people is critical to Indigenous policy and research design (Fredericks, 2009; Fredericks et al., 2011; Walker et al., 2014). These participatory concepts are reflected in the UNDRIP, which entitles Indigenous persons

412  Research handbook on disability policy to exercise self-determination (UNDRIP, art. 4), the right to maintain and strengthen their distinct political, legal, economic, social, and cultural institutions (UNDRIP, art. 5), as well as a right to participate in decision-making in matters which would affect their rights, through representatives chosen by themselves in accordance with their own procedures, as well as to maintain and develop their own Indigenous decision-making institutions (UNDRIP, art. 18). Similarly, a key fundamental principle in disability human rights discourse is that persons with disabilities should have a voice in the conceptualization, formation, implementation, and reviewing of policies and practices that impact upon ability equality (Harpur, 2017; Stein, 2007). This “participatory justice dynamic” underscores key provisions of the CRPD (Harpur & Stein, 2021). The right for Indigenous persons and for persons with disability to be involved in their respective groups is often reflected in RAPs and DAPs discussed above; however, more is required to promote the voice of Indigenous people with disability as a valued population. Universities must resource inclusion appropriately, so that Indigenous students, staff, and faculty with disability can focus on advocating for university-wide and sector-wide change, rather than being called upon continually to engage in otherwise achievable programmatic or technical activities such as checking a website for accessibility. Such efficiency is critical in light of the low numbers of Indigenous students, staff, and faculty with disability at any single university. Collective groups should be organized both at the individual university level and at the Universities Australia sector-wide level. These groups should be provided with a voice in how higher education promotes inclusion for individuals with Indigenous, disability, and intersectional attributes. Sheelagh’s insight on these matters is trenchant: Universities across Australia, to varying degrees, silo and silence attributes that have you marginalized, or in need of quick fixes. What we need is a national approach that enables people such as myself, those with intersecting identities, to be recognized and whose stories to be heard. But let’s go further than listening, let’s actually listen and enact the solutions being provided by people like me. People who live with this crap every single day; problem-solve this crap every single day. So isn’t it reasonable to argue that we also have legitimate ideas and strategies for solving these problems that universities become places of choice no matter your ‘misfit’ status?

C.

Advancing an Indigenous People with Disability Research and Innovation Agenda

Reconciling and responding to the marginalization and silencing of Indigenous people with disability will require further research and innovative responses. In 2016, Indigenous people from around the world worked with the United Nations to establish the Expert Meeting on Indigenous Persons with Disability. One of the key recommendations was the urgent need for Indigenous community-controlled disability research using culturally responsive methodologies (United Nations, 2016). Within the Australian context, Gilroy and Donelly (2016, p. 558) state that “[a]fter two centuries of colonization in Australia, western science in the area of disability research has not proven effective in understanding and addressing the health and well-being of Indigenous people with disability.” Likewise, the plethora of university RAPs and DAPs, as well as schemes enacted by Universities Australia, are ineffective or silent as far as addressing the needs and aspirations of Indigenous people with disability. Universities contain research and operational expertise on disability, indigeneity, and intersectionality and can, but currently do not, utlize this expertise in collaborative efforts. The University of Queensland’s DAP, for instance, requires the university to support academic

Strategic human rights-based policy reforms  413 research promoting operational efforts to advance ability equality (University of Queensland, 2018, p. 13). Although some of this research has been published (Pegg, Karl, & Harpur, 2020) and translated into operational outcomes, beyond the current chapter, this research agenda has not extended to the heightened vulnerabilities and strengths arising from the intersection of indigeneity and disability. Strikingly, a comprehensive innovation and research plan exists on indigeneity but not on disability. Similarly, the same RAP advances a transformational research agenda, but it does not extend to considering how Indigenous populations experience disability. University diversity and inclusion research and innovation initiatives are critical for each attribute, but should also contain a focus on intersectionality if societal structures of overlapping discrimination are to be addressed.

CONCLUSION The inequalities experienced by Indigenous people and persons with disability are combined and magnified for those who live with both these identities. The higher education sector is uniquely situated to become a human rights change agent and help create a society that is more accepting and inclusive of diversity. Universities and sector bodies should use their privileged position to transform themselves, the students they mould, the staff and faculty they employ, and the wider community to evolve from tolerating limited difference to accepting diversity, and enable all Indigenous people, persons with disabilities, and those who live with both identities to move from exclusion, welfare, and charity to economic independence, work, and equality. Placing these recommendations within the context of Sheelagh’s experientially gained knowledge: One phrase I hate with a passion is ‘You are inspirational.’ As if I’m some anomaly that can’t be repeated. Quite simply I don’t fit the accepted norm of who belongs at university. I am far more than ‘inspirational,’ I am a qualified, experienced and innovative Indigenous academic with disability.

The participatory justice paradigm is central to crafting a more inclusive society. Interventions should focus on both the process and outcome of human rights. It necessitates the leadership and participation of people who live with diverse attributes (along with other stakeholders) in the process of societal reconstruction so that they can claim their rightful place in society. To comply with this framework, States must collaborate in policy design, implementation, enforcement, and monitoring with Indigenous people, persons with disability, individuals with both statuses, and those in other diversity categories, as well as their communities and families, advocates, and organizations, and civil society at large. This will ensure a sense of ownership and power among those citizens targeted by the process, as well as increasing the probability that schemes introduced to help those with dual status and dual stressors might actually achieve a measure of social justice.

NOTE 1.

Start of endnote. The authors thank Jessica Gillies for digital access support, and Mitree Vongphakdi and William Triste for research assistance. End of endnote.

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416  Research handbook on disability policy Meekosha, H. (2011). Decolonising disability: Thinking and acting globally. Disability & Society, 26(6), 667–682. Monash University. (2016). Reconciliation Action Plan 2016–2018. https://www.monash.edu/__data/ ​ ​ ​ ​ ​ ​ assets/pdf_file/0008/386855/Monash-RAP_2016-2018.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ Moodie, N., Maxwell, J., & Rudolph, S. (2019). The impact of racism on the schooling experiences of Aboriginal and Torres Strait Islander students: A systematic review. The Australian Educational Researcher, 46(2), 273–295. Moses, A. D. (2000). An antipodean genocide? The origins of the genocidal moment in the colonization of Australia. Journal of Genocide Research, 2(1), 89–106. Murdoch University. (2016). Disability Access and Inclusion Plan 2016–2020. https://www.murdoch ​ ​ ​ .edu.au/docs/default-source/life-@-murdoch/disability-access-inclusion-plan-2016-2020.docx?sfvrsn ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ =29bb3447_4 ​ ​ Nolan, W., Hill, B., & Harris, J. (2010). Reconciliation and social justice: The role of Australian universities in educating for change. In N. Riseman, S. Rechter, & E. Warne (Eds.), Learning, teaching and social justice in higher education (pp. 71–83). The Custom Book Centre. Pascoe, B. (2014). Dark emu: Black seeds agriculture or accident? Magabala Books. Pegg, S., Karl, M., & Harpur, P. (2020). Negotiating work-based travel for people with disabilities. Current Issues in Tourism, 1–7. https://doi.org/10.1080/13683500.2020.1801605 ​ ​ ​ ​ ​ ​ ​ Price, M., Salzer, M. S., O’Shea, A., & Kerschbaum, S. L. (2017). Disclosure of mental disability by college and university faculty: The negotiation of accommodations, supports, and barriers. Disability Studies Quarterly, 37(2). https://doi.org/10.18061/dsq.v37i2.5487 ​ ​ ​ ​ ​ ​ ​ Royal Melbourne Institute of Technology. (2016). Reconciliation Action Plan 2016–2018. https:// www.rmit.edu.au/content/dam/rmit/documents/Students/Support_and_Facilities/NgararaWillim/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Reconciliation%20Action%20Plan.pdf ​ ​ ​ Sachs, D., & Schreuer, N. (2011). Inclusion of students with disabilities in higher education: Performance and participation in students’ experiences. Disability Studies Quarterly, 31(2). http://dx.doi.org/10 ​ ​ ​ ​ ​ .18061/dsq.v31i2 ​ ​ Smith, M. S., & Stein, M. A. (2020). Combating the exclusion and marginalisation of persons with intellectual disabilities in higher education in the United States. In J. Bhabha, W. Giles, & F. Mahamed (Eds.), A better future: The role of higher education for displaced and marginalised people (pp. 268–291). Cambridge University Press. Stanley, N., Ridley, J., Harris, J., & Manthorpe, J. (2011). Disclosing disability in the context of professional regulation: A qualitative UK study. Disability & Society, 26(1), 19–32. https://doi.org/10.1080/ ​ ​ ​ ​ ​ 09687599.2011.529663 ​ ​ Stein, M. A. (2007). Disability human rights. California Law Review, 95, 75–121. United Nations. (2016). Expert meeting on Indigenous Persons with Disability. Embracing Diversity. http://www.ohchr.org/EN/Issues/Disability ​ ​ ​ ​ ​ ​ United Nations General Assembly. (2007). United Nations Declaration of the Rights of Indigenous Peoples: Resolution adopted by the General Assembly. https://www.un.org/development/desa/ ​ ​ ​ ​ ​ ​ indigenouspeoples/declaration-on-the-rights-of-indigenous-peoples.html ​ ​ ​ ​ ​ ​ ​ ​ Universities Australia. (2019). Indigenous Strategy First Annual Report. https://www.universitie ​ ​ ​ ​ saustralia.edu.au/wp-content/uploads/2019/06/20190304-Final-Indigenous-Strategy-Report-v2-2 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ .pdf; Universities Australia, Indigenous Strategy Second Annual Report: https://www.universitie ​ ​ ​ ​ saustralia.edu.au/wp-content/uploads/2020/02/Indigenous-strategy-second-annual-report.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Universities Australia. (n.d.a). About Universities Australia Women. https://www.universitiesaustralia ​ ​ ​ ​ ​ .edu.au/policy-submissions/diversity-equity/universities-australia-women/ ​ ​ ​ ​ ​ ​ ​ ​ Universities Australia. (n.d.b). Indigenous Strategy 2017–2020. https://www.universitiesaustralia.edu ​ ​ ​ ​ ​ ​ .au/wp-content/uploads/2019/06/20190304-Final-Indigenous-Strategy-Report-v2-2.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ University of Adelaide. (2019). Reconciliation Action Plan 2019–2021. https://www.adelaide.edu.au/ ​ ​ ​ ​ ​ reconciliation/system/files/media/documents/2021-03/uofa-rap.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ University of Melbourne. (2019). Reconciliation Action Plan 2019–2022. https://about.unimelb.edu.au/ ​ ​ ​ ​ ​ __data/assets/pdf_file/0026/69308/Unimelb-Reconciliation-Action-Plan.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ University of New England (UNE). (2020). Accessibility Action Plan 2020–2021. https://humanrights ​ ​ .gov.au/sites/default/files/une_aap_june_2020_-_june_2021_13082020_4.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​​ ​ ​ ​ ​

Strategic human rights-based policy reforms  417 University of New South Wales (UNSW). (2018). Indigenous Strategy 2018. https://www.nuragili.unsw ​ ​ ​ ​ .edu.au/sites/default/files/documents/UNSW_Indigenous_Strategy_2018_0_0.pdf. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ University of Queensland (UQ). (2021). Aboriginal and Torres Strait Islander Research and Innovation Strategy 2021–2025. https://research.uq.edu.au/files/39775/20210223%20UQ%20Aboriginal%20and ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %20Torres%20Strait%20Islander%20Research%20and%20Innovation%20Strategy%202021-2025 ​ ​ ​ ​ ​ ​ ​ ​ ​ .pdf University of Queensland (UQ). (2019). Reconciliation Action Plan 2019–2022. https://about.uq.edu.au/ ​ ​ ​ ​ ​ files/535/UQ-RAP.pdf ​ ​ ​ ​ University of Queensland (UQ). (2018). Disability Action Plan 2018–2021. https://staff.uq.edu.au/files/ ​ ​ ​ ​ ​ ​ 17880/uq-disability-action-plan-2018-2021.pdf ​ ​ ​ ​ ​ ​ ​ University of Sydney (USyd). (2019). Disability Inclusion and Action Plan 2019–2024. http://sydney ​ ​ .edu.au/eeo/disability_access/dap/ ​ ​ ​ ​ ​ ​ University of Technology Sydney (UTS). (2020). Access and Inclusion Plan 2020–2024. https://www ​ ​ .uts.edu.au/sites/default/files/2020-07/Access%20and%20Inclusion%20Plan%202020-2024.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ University of Wollongong (UOW). (2019). Accessibility Action Plan 2019–2021. https://documents.uow ​ ​ ​ .edu.au/content/groups/public/@web/@dvce/@in2uni/documents/doc/uow256389.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Walker, M., Fredericks, B., Mills, K., & Anderson, D. (2014). ‘Yarning’ as a method for community-based health research with Indigenous women: The indigenous women’s wellness research program. Health Care for Women International, 35(10), 1216–1226. Wilks, J., & Wilson, K. (2015). Indigenous Australia: A profile of the Aboriginal and Torres Strait Islander higher education student population. Australian Universities’ Review, 57(2), 17–30. Wilson-Strydom, M. (2015). University access and theories of social justice: Contributions of the capabilities approach. Higher Education, 69(1), 143–155.

35. Narrative 11: The “lucky” one Ayah Wehbe

I often said I’m lucky. I had a great education and went to schools which had a hearing support unit. I met other d/Deaf and Hard of Hearing people, some even with similar backgrounds and religion, and grew up with them. I am still friends with some of them 10 years later. In 2021, I was at a conference for d/Deaf and Hard of Hearing people. In the online chat box, where participants were discussing educational access in school for people with hearing loss, and sharing experiences, I said that “I am lucky” I had good access to education growing up as a student with hearing loss. But someone else’s comment made me pause. The reply said, “Deaf and Hard of Hearing students shouldn’t have to consider themselves ‘lucky’ to have okay/good/decent access at school. But that seems to be how low the bar is.” I can’t explain my feelings or thoughts when I read that. But it really got me thinking, I shouldn’t have to be “lucky”. What was it that made me feel lucky to have had a great education that set the foundation for the rest of my life? I am now doing a PhD after completing an honours university degree in Social Research and Policy at UNSW Sydney. I always feel grateful for my primary and high school years and the wonderful teachers who have inspired me. All I remember from my schooling years is that when I was five years old, I was in a mainstream school and they found out I had hearing loss. No one picked up that I had hearing loss. It was actually when I was in kindergarten, I had a teacher who said, “Ayah is hearing impaired.” No one believed her. My parents didn’t believe her, the school principal didn’t believe her. I was talking, laughing as a child. The symptoms are not always obvious when people have hearing loss. My mum took me to do a hearing test and it turned out I had a sloping, severe to profound hearing loss. Sloping means I can hear a few low/deep sounds and then total hearing loss of other sounds. We don’t know if I was born with hearing loss, or I started to lose it gradually. But I was five years old. And it was a shock for my mum as well and my dad, I think my dad started crying. And there was some shock and stigma in my family and the Lebanese–Muslim community. My mum wanted me to have the best life, and the best education I could have. So, she ignored everyone and looked for another school and put me in a hearing support unit at a new school about 15 minutes further away. From year 1 to year 12, I grew up with a similar group of people with hearing loss. Most also went to the same high school. I had the same teachers of the Deaf (and teacher’s aides) in primary school. They were very good. And kind. But for me at that time, I was the only Muslim girl. Everyone else was majority “white people” or of Asian background. I was the only Muslim girl there, there were Muslim boys (some with hearing loss) but I was the only Muslim girl in that school (and also the only one with hearing loss). I was the only one wearing the hijab, which I put on when I was in year 6. When I went into high school, I went to a mainstream school which also had a hearing support unit. There were some teachers of the Deaf, but they had more Auslan interpreters. I was able to participate in mainstream classes with other students but accompanied with an 418

Narrative 11: The “lucky” one  419 Auslan interpreter or teacher aide who knows Auslan. There were also more Muslim students there. I remember thinking, “Ah I’m not the only one wearing the scarf anymore.” There were more Muslims (girls), there were more Lebanese groups and there were also more hearing support unit group and d/Deaf groups. It was nice. But I did struggle trying to figure out into which group I fit in. I would go there, and then I’d go there, and then I would go there. But I would not fit perfectly into any of the groups. So, with the Muslim group for me, it was great that I was not the only Muslim there. But there were communication barriers. And then with the hearing support, D/deaf people group, I could communicate and understand them very well. But I felt like, I don’t really know how to say it, but their educational level/passion was not the same as mine. I wanted to continue with my education. I was, I’m not going to say smarter than them, but I wanted to study, and I liked to study and learn. I felt like I was connected, but not academically challenged in that hearing support group. And then I was put in the gifted and talented class, for people who are the top students in the school. I was in some of these classes with them, but there was a communication breakdown too. There was good and bad in all of these groups. Looking back, I was lucky to have experienced different groups and people. This “lucky” mentality followed me after high school. I got hired by the university to work on different research projects. But one of the rules was they had to hire someone with a disability – so it made me think if they didn’t have that rule, would they have accepted me? On one hand, I’m lucky that I got this amazing opportunity. I started to work and develop my skills. On the other hand, it felt like I had to work harder to prove that they didn’t hire me because I have a disability – I have other skills and qualifications. So it is good, but it is not good. I feel like it is two sides of one coin. But at least I have the opportunity. I feel like I have improved myself a lot, and I’m lucky the people I worked with were supportive and they did their best. But half the time they don’t know what you need, they don’t know what support you need, so you have to explain to them. Am I really lucky? Is a mainstream or support unit or Deaf Schools the best option? It’s a tricky situation and there is no right answer. Not everyone is the same. I am writing about my personal experiences, and what drove me was my own motivation and my love for studying. I’ve been to a Deaf school before, a school where they use Auslan and it’s all completely for D/deaf and Hard of Hearing students. I heard recently one of the last Deaf schools in NSW has closed. There are now fewer people in the hearing support units like the schools I went to. When I graduated in 2011, there were about 15–20 people with hearing loss in the hearing support unit in that high school. Ten years later, there were even fewer. There is a push to place students with hearing loss in mainstream schools. By themselves with a teacher aide or Auslan educator or whatever the role is now, I am not sure. I worry for those in mainstream schools who will face isolation. They miss out on the social connection and being surrounded by similar people, other people like them who also have hearing loss. It is a debate I have with my friend who is a teacher now. She has received no training to accommodate a student with hearing loss among 25 other students. But she talks about the awareness raising of other students to learn and accept students with disabilities and I agree with that. But it shouldn’t be done at the expense of students with disabilities alone.

420  Research handbook on disability policy Additionally, my parents are from Lebanon while I was born in Australia, and I went to school here. My parents faced disruptions in their education and always encouraged us to learn and succeed. They keep reminding me how “lucky” we are to live in a country like Australia where there is free access to education for everyone and also support for people with hearing loss/disability. So, I will always consider myself the lucky one. But what about others? Why do I have to be lucky to succeed? Education and access to education should be equal for all. Why is it that people who also come from different cultural backgrounds and people with hearing loss/disability should feel lucky or have gratitude for these opportunities (if and when they’re presented)? This feeling of doubt, and always having to try harder to be accepted or to prove our worth is even stronger. I am grateful for my education, but I still see the value of being around people similar to me, being more involved in the Deaf community, learning Auslan and feeling a connection to that. Or being around people from similar cultural and religious backgrounds. The social connection is just as important as the academic and intellectual ones.

36. Exploring equality and non-discrimination of disabled students in policy and practice in public universities in Uganda Paul Emong and Anica Zeyen

1. INTRODUCTION Education is a fundamental right and is a prerequisite for any person to make effective use of other rights. Receiving adequate education is particularly important for disabled people due to the often overwhelming challenges they face linked to institutional ableism. Against this background, Uganda – one of the least developed nations globally – has recognized education as a right and has officially practised inclusive education approaches for the last three decades. To achieve this, Uganda has issued laws and policies and established institutional frameworks for attaining disability inclusion in education. Yet, while there has been progress in primary and secondary education, little impact is registered at higher education levels. These disparities raise questions about whether disability inclusion in Ugandan universities is informed by the inclusive education principles outlined in law. This chapter examines how Ugandan universities apply equality and non-discrimination principles in the practices of disability inclusion in the teaching and assessment of disabled students. We use examples of lived experiences of disabled students across different disciplines and Ugandan universities to generate insights into these research questions. The chapter proposes some strategies towards attaining disability inclusion in universities in Uganda. The chapter is organized as follows. Section two provides a brief overview of the human rights model of disability and the concepts of equality, specifically transformative equality, and non-discrimination. Section three explores disability in education in Uganda and its progress towards disability inclusion in higher education. Section four presents the methodology. Section five discusses the practices of disability inclusion in Ugandan universities in the teaching and assessment of students and in their inclusion in the academic programmes. We conclude with some final remarks and implications for practice.

2.

HUMAN RIGHTS MODEL OF DISABILITY AND TRANSFORMATIVE EQUALITY FOR DISABILITY IN HIGHER EDUCATION

Disabled people in any community generally experience cycles of disadvantage arising from structural, institutional and systemic discrimination as well as stigma, stereotyping, prejudice and harassment/violence. This therefore calls for specific measures to be designed not only to eliminate these societal barriers but also to ensure the individualized support required by a disabled person is available. The aim of this section is to explore disability as a human rights 421

422  Research handbook on disability policy issue as well as transformative equality, and the implications of these concepts for disability inclusion in higher education. We conjecture that examining the inclusion of disabled people in higher education in Uganda through these two lenses allows us to identify how universities address imbalances that exist against disabled students and staff, provide individualized support, and enhance in a proactive manner their ability to participate and generally accommodate disability as part of human difference. a.

Human Rights Model of Disabiltiy

The understanding of disability has changed over time (Degener, 2016; Thomas & Corber, 2002). Advocacy by disabled people (UPIAS, 1976; DPI, 1998), the WHO International Classification of Impairments, Disability and Handicaps (WHO, 1980) and adoption of the United Nations Convention for the Rights of People with Disabilities (CRPD) constitute some of the key shifts in the understanding of disability (see CRPD’s Preamble, para. e and art. 1). It moved the global societal discussion from the medical model which understands disability as rooted in a person’s physical, sensory, mental and/or intellectual impairment to the social model of disability (Degener, 2016). In the latter, disability is framed as being caused by societal attitudes and inaccessible and excluding environments rather than by the impairment (Oliver, 2013; Thomas & Corber, 2002). This understanding emerged from the disability rights movement in the UK and USA and became a central focus of the human rights discussions during CRPD negotiations (Degener, 2016). The human rights model of disability as described by Lawson and Beckett (2021) focuses on the inherent dignity of a person including their individual and medical condition and centres the person in all decisions affecting them. The model relocates the problem to the context of the person. The human rights model draws on complementary aspects of the medical and social models to address the structural and systemic nature of discrimination that disabled people experience (Lawson & Beckett, 2021). Rather than neglecting the negative impact of impairment on quality and length of life, the human rights model calls for the integration of these bodily differences into social justice regulations (Degener, 2016). We argue that this shift in understanding and its implementation into the legal framework should allow for a better analysis of how equality and non-discrimination on the grounds of disability can be understood. b.

Transformative Equality and Disability Inclusion in Higher Education

Transformative equality is a form of equality that seeks to bring a marked change in the lived experiences of disabled people through designing measures that remove deeply entrenched and interlocking cycles of disadvantage. It has emerged that despite existing laws on disability, there is still a disconnect between these laws and lived experiences of disabled people. Therefore, we suggest looking at the underlying causes of disadvantage experienced by disabled people to move beyond formal equality guarantees or substantive equality (programmatic) approaches. These include issues such as neutral laws, accessibility measures, stereotypes, stigma, harassment/violence, appropriate individualized support measures, special educational needs and assistive technologies. In other words, transformative equality aims to resolve the structures that cause discrimination (Atrey et al., 2017; Broderick, 2015).

Exploring equality and non-discrimination of disabled students  423 Following this viewpoint, the provision of specific measures to actualize human rights constitutes an essential element of transformative equality, and should be a mandatory obligation for any organization. Transformative equality encompasses formal equality, substantive equality and equality of opportunity for disabled students, as well as specific measures to actualize these human rights norms. Here, formal equality specifically tackles direct discrimination. It does so by treating people in similar situations the same and people in different situations differently, so it can be a potent tool to overcome harmful stereotypes. However, formal equality is less effective against protecting disabled people from having their impairments used as grounds for the elimination of their rights. The substantive equality approach tries to address this problem, by not solely focusing on equal treatment, but also by incorporating the differences in outcome that may result from this same treatment (Goldschmidt, 2017). Substantive equality aims to challenge structural and indirect discrimination and as such redefines discrimination as oppression. In the context of higher education, this would require universities to provide education to disabled students as a universal human right (CRPD art. 24; Constitution of Uganda art. 30), granting them the same right to obtain an education of the same quality as for non-disabled students. Disability would be further interpreted as a unique ground for discrimination compared to other personal characteristics. For instance, people with different disabilities require different accommodation measures. While a wheelchair user needs step-free access, a blind student requires accessible digital content and readings, and a d/Deaf student may require a sign language interpreter. Despite the diversity of needs, an equality-based and non-discriminatory view of disability in higher education needs to take these measures into consideration to remove disabling barriers, and to provide the required individualized support disabled students require to enable their equal participation in both curricular and extra-curricular university programmes. In short, the universal enjoyment of human rights as per the guidance by the UN Treaty bodies recognizes human diversity in society (Covenant on Civil and Political Rights (CCPR) General Comment (G.C). 18 and CRPD G. C. 6). This, however, does not equate to equal treatment (UN CCPR G.C. 18, para. 8). The principle of equality sometimes requires taking affirmative action in order to diminish or eliminate conditions that perpetuate discrimination (CCPR G.C. 18, para. 10). Therefore, as further suggested by CCPR G.C. 18 in para. 13, “not every differentiation of treatment will constitute discrimination, if aimed at achieving equality for a particular group”. In the context of higher education, this means making it available, accessible, acceptable and adaptable for people with disability. As such, promoting equality for and tackling discrimination against disabled students are cross-cutting obligations for all public and private universities. Therefore, the normative duty of government and of universities is to ensure that disabled students are enabled to exercise their right to education without discrimination and on the basis of equal opportunities (article 24 of CRPD; CRPD G. C. 6 in paras 14–29). To analyse whether this provision is granted, a clear understanding of what constitutes discrimination on the basis of disability in education is required. Article 2 of the CRPD provides guidance on what discrimination on the basis of disability means. According to article 2 CRPD, discrimination refers to: Any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all

424  Research handbook on disability policy human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.

Discrimination on the basis of disability in higher education would then refer to any actions that amount to direct or indirect discrimination (CRPD G. C. 6, para. 18). Each of these forms is briefly explained below with specific reference to the university setting: direct discrimination for instance would occur if a university refuses to admit a student because of their disability. In contrast, indirect discrimination at university might include examination policies that do not allow for additional time or different formats such as large print to accommodate accessibility needs. Instances of harassment include bullying or the use of derogatory language in policy or in practice. Unsuitable or inaccessible toilets create an exclusionary environment. Drawing from CRPD article 2, reasonable accommodation means necessary modification made to enable disabled student inclusion in services the university provides. Emong (2014) explains that reasonable accommodation in a university setting is triggered where its practices, provisions or criteria, physical features or absence of auxiliary aids or services put a disabled student at a disadvantage in comparison with a non-disabled student. Thus, a university’s duty to provide reasonable accommodation in the context of disability is: i. An immediate non-discrimination duty (CRPD G. C. 6, para. 25c; CESCR G.C. 5,1 para. 15). ii. An individualized reactive duty that is applicable from the moment a request for reasonable accommodation is received by the university or where a university realizes through admission that some disabled students require reasonable accommodations to enable them to participate in the university’s programmes (CRPD G. C. 6, para. 24b). iii. A duty that should not impose a disproportionate or undue burden on the duty bearer (CRPD G. C. 6, para. 25). “Disproportionate or undue burden” is a single concept that sets the limit of the duty to provide reasonable accommodation (CRPD G. C 6, para. 25b). The discussion on the determinants for justification not to provide reasonable accommodation is beyond the scope of this chapter.2 Whereas CRPD G. C. 6 explains reasonable accommodation to be a reactive duty in providing for an individualized disability need, some commentaries (Ferri, 2018; Kivijärvi & Rautiainen, 2020; Quinlivan, 2019) view the duty to provide reasonable accommodation as both a reactive and a proactive duty to address the disabling barriers in an institution. Their view is that a duty to undertake reasonable accommodation constitutes a wide scope including eliminating disadvantage arising from practices, provisions or criteria, physical features and absence of auxiliary aids or services and providing disabled people access to, for example, a university as close as reasonably possible to the standard normally offered to non-disabled people. The difference between the reasonable accommodation approaches (reactive, proactive or anticipatory) lies in how each is triggered and the effects each has on removing disabling barriers in an organization (Emong, 2014). A reactive approach means responding to the immediate barriers facing the particular disabled student (Lawson, 2017). It acknowledges that disabled students are not a homogenous group. Even if multiple students have the same category of disability (e.g., hearing impairment), their needs vary, requiring an individualized approach to their needs. Proactive approaches on the other hand involve a university anticipating disabling barriers likely to arise for a broad group of disabled organizational stakeholders and planning to tackle them even if

Exploring equality and non-discrimination of disabled students  425 those stakeholders are not yet part of the university. Therefore, proactive reasonable accommodation approaches highlight a university’s awareness of its respective disabling barriers as well as its efforts towards removing those. The proactive reasonable accommodation approach is thus in line with the social model of disability.

3.

PROGRESS TOWARDS DISABILITY-INCLUSIVE HIGHER EDUCATION IN UGANDA – AN OVERVIEW

Uganda has a progressive legal and pragmatic framework for disability-inclusive education. The framework aims to attain inclusive education for disabled students in two ways. First, it recognizes and guarantees disabled people a right to education on an equal basis with others (Constitution of Uganda 1995 – National Objectives and Directive Principles of State Policy, XVI and XVIII, art. 21, art. 30, art. 32 (1) and UOTIA 2001 – sec. 7, 24 and 38; PwDA 2020 – sec. 6). Second, the framework establishes an educational infrastructure to transform processes to bring about changes in education policy, procedures and mode of delivery that take account of disability in learning. The legal framework is in three strands: the Constitutional provisions on disability; provisions on disability in the mainstream Acts of Parliament and Policies; and specific Acts of Parliament on Disability. Uganda has also ratified the CRPD and therefore has an obligation to ensure all disabled Ugandans attain education as a universal right, without discrimination and on the basis of equal opportunities (article 24 of the CRPD). The pragmatic framework is the established educational infrastructure. It includes a department of special needs education at the Ministry of Education, a special needs education section at the Uganda National Examinations Board, a special needs department at the National Curriculum Development Centre, a section for special needs at the Education Standards Agency, the representation of disabled people at the National Council for Higher Education Board and at Public University Councils, special educational needs teacher training as well as District/City Inspectors of schools in charge of special needs. However, the bulk of those institutional bodies focus on the primary and secondary levels of education rather than on tertiary education and universities. As a result of the above outlined framework more disabled children have been enrolled in primary and secondary education (Emong & Eron, 2016). That being said, the picture varies across disabiltites. Judging from the national statistics on the education of disabled people provided in UBOS (2019), the more prominent students at school are those with physical, hearing or visual impairments in comparison to children with severe impairments, or multiple impairments, such as deafblindness, hidden disabling conditions, specific learning difficulties and mental disabilities. The latter are the most disadvantaged children in the Ugandan education system. They are very unlikely to complete any level of education or are often not even enrolled. Disabled children and young adults (ages 5–24 years) make up 14% (15% for girls and 12% for boys) of the population (UBOS, 2019). Sixty-one per cent of disabled children and young adults attend educational institutions in comparison to 68% of non-disabled (UBOS, 2019). Of those who are at school, 75% of disabled children enrolled in primary schools do not complete primary education (Emong & Eron, 2016). In terms of literacy levels, 55% of disabled people who are 10 years and above are literate (UBOS, 2019) compared to the national literacy level

426  Research handbook on disability policy of 73% (UBOS, 2019). These figures present persistent inequalities in access to and retention in education between disabled and non-disabled Ugandans. These inequalities are perpetuated by various interdependent factors (Guzu, 2014; Atim et al., 2020). They include few adequately trained Special Needs Education teachers, limited funding for disability and supply of specific impairment-related scholastic materials,3 lack of assistive devices, inaccessible schools, negative attitudes of parents and the community, and inadequate coordination between the Ministry of Education and Local Government. We will now outline and discuss the legal landscape for inclusive education in Uganda. a.

Institutional Frameworks for Disability Inclusion in Ugandan Higher Education

In Uganda, the Universities and Other Tertiary Institutions Act (UOTIA) 2001 (as amended) is the overarching law for higher education. UOTIA provides the administration and standards for higher education institutions. This Act established the National Council for Higher Education (NCHE) to regulate higher education institutions. On disability inclusion, UOTIA has some pronouncements on the objectives and functions of public universities. Each is briefly highlighted: On the Objects and Functions of a Public University: UOTIA section 24(2)(b) provides that a public university is obliged to provide the opportunity to learn to all people including disabled people. In addition, in section 24(2)(c) UOTIA recognizes the provision of accessible physical facilities to the users of public universities. Therefore, the recognition of disability in the objectives and functions of public universities lays a foundation for public universities to proactively plan for disability inclusion and to ensure that university premises are accessible for disabled people. Policy Bodies: The policy-making body of NCHE is the NCHE Council, and for a university is called a University Council. UOTIA requires the representation of disabled people in these organs. Section 7(1)(i) provides that out of the four persons representing other sectors of higher education on the NCHE Council, appointed by the Minister, one should be a disabled person. According to section 38(1)(r), a public university’s Council requires two disabled representatives: one elected by disabled staff and another by the National Organizations of Persons with Disabilities. The goal of this obligatory representation is that disability becomes mainstreamed in NCHE and public universities’ policies and regulations, such that disability is recognized in their plans, programmes, policies and practices. The representation of disabled people in the Councils is rooted in Uganda’s constitutional provision on affirmative action (art. 32 of Uganda’s Constitution 1995). As of 2021, five out of nine public universities have adopted disability policies and all public universities have some strategies in place for disability inclusion albeit to varying degrees. Kyambogo University has a policy on disability and a disability support centre to implement the policy directives. There are also some statistics available on disabled staff and students. Makerere has a policy on disability, yet no infrastructure for disability mainstreaming and lacks data on disabled staff and students (Nampewo & Musoke, 2019). In other universities, there is no disability policy and no system to mainstream disability nor any data on disabled staff and students. In these instances university policies are not aligned with the requirements of disability inclusion in the national disability laws. Admission to a Public University: In Ugandan laws, the aim of affirmative action is to redress inequalities for marginalized groups. Prior to the establishment of affirmative action admission

Exploring equality and non-discrimination of disabled students  427 Table 36.1

Distribution of courses for students under affirmative action scheme

Courses Business-related Agriculture-related Engineering and Technical Community Development-related Education, Law, Arts and Economics Medicine and Science-related Total

12/13 19 7 9 15

13/14 21 2 5 12

14/15 10 3 1 15

Academic year 15/16 16/17 20 22 2 0 2 3 8 16

17/18 10 0 5 7

18/19 11 3 2 6

Total 113 17 27 79

11

21

27

27

15

34

38

173

5 66

3 64

8 64

5 64

9 65

9 65

5 65

44 453

Source: NUDIPU, 2021 data, authors’ analysis. Academic years 2012/13–2018/19.

schemes to universities in 2001, admission to public universities was based on merit – largely applying the principles of formal equality. This led to the underrepresentation of disabled students, women and students from disadvantaged communities (schools) (Kaahwa et al., 2019; Kwesiga & Ahikire, 2006; Odaga, 2020; Onsongo, 2009). Section 28(3) of UOTIA 2001 (as amended) requires that the Admission Committee of a public university takes affirmative action in favour of marginalized groups based on gender, disability and disadvantaged schools. It is important to note that this scheme is only available via direct entry from secondary education. The Public Universities Joint Admissions Board (PUJAB), a body responsible for direct entry admissions to public universities, has established criteria for admission through each of those schemes. Disabled students apply through PUJAB. Those who meet the minimum requirements for admission to a university are also advised to obtain a recommendation from the National Union of Disabled Persons of Uganda (NUDIPU) confirming their disabilities. Then they undergo an assessment by the PUJAB Disability Assessment Committee based on the adopted Guidelines on Admission through the Disability Scheme. The Ugandan government allocates 64 slots to disabled students annually to be admitted through the disability affirmative action scheme. This scheme officially started in 2001 and students admitted through it, like those admitted on merit, are sponsored by the government. A report by NUDIPU (2021) indicates that for seven academic years (2012/2013 to 2018/2019), 453 (210 female/243 male) disabled students joined a public university through this affirmative action scheme. These students were admitted to 66 different programmes (see Table 36.1). Table 36.1 shows that few disabled students are admitted to programmes which are STEM-based and require lab or other practical work. If students are admitted to such programmes, it is usually based on the assessment that they have “mild” disabilities and are therefore considered capable to “manage” the coursework. The perception that disabled students, especially those with visual or hearing impairments and those with multiple or severe disabilities, are unable to deal with the practical elements of science, sports, medical and engineering degrees also leads to lower numbers of students admitted to those universities as highlighted in Table 36.2. For instance, the newly established public universities Muni, Kabale and Lira are science and medicine-oriented universities and have low numbers of disabled students. Other than admission through the affirmative action scheme, disabled students, like other students, also join public universities through other admission criteria per the NCHE guide-

428  Research handbook on disability policy Table 36.2

Distribution of the students by university admitted in affirmative action scheme

  2012/13 2013/14 2014/15 2015/16 2016/17 2017/18 2018/19 Busitema 0 0 0 1 1 2 1 University Gulu University 2 2 4 6 4 2 2 Kyambogo 17 13 19 14 13 12 13 University Lira University 0 0 0 0 0 1 1 Kabale University 0 0 0 0 0 2 0 Makerere 36 37 32 28 37 37 39 University Makerere University 10 12 7 13 8 8 8 Business School Mbarara University of 1 0 2 1 1 1 1 Science and Technology Muni University 0 0 0 1 1 0 0  Total 66 64 64 64 65 65 65 Source: NUDIPU (2021).

Table 36.3

Disabled students in the Kyambogo University Disability Support Centre

Academic Year 2017/2018 2018/2019 2019/2020 2020/2021 2021/2022 Number of disabled students registered 74 102 110 121 171 Source: Data compiled by the authors from disabled students’ assessment records of the Kyambogo University Disability Support Centre in 2022.

lines. Therefore, there were more disabled students in public universities in Uganda than those indicated in Table 36.1 above. Indeed, more disabled students are joining public universities annually as illustrated by the number of disabled students recorded in the Kyambogo University Disability Support Centre in five academic years. The wording of the affirmative action provisions suggests that these directives on disability are only applicable to public universities. This may impact on the way private universities and other tertiary institutions recognize and address disability inclusion. It further suggests that it is at the discretion of private universities and other tertiary institutions to admit disabled students on affirmative action and ensure the representation of disabled people on their governing councils. Internal University Institutional Frameworks for Disability Inclusion: These are systems and mechanisms within a university advocating for equality, equity and inclusion for disabled staff and students. These frameworks include university policies relevant to disability, disability (support) centres, associations of disabled students or staff, or designated staff working in disability support. Only some Ugandan universities have such frameworks. Nampewo and Musoke (2019) observe that a disability policy is a university’s political will to practise disability inclusion and commitment to disability mainstreaming. It is an indicator of whether a university is developing progressive paths towards becoming disability-inclusive. It also demonstrates the impact of the CRPD and national legislations on universities. Ugandan

Exploring equality and non-discrimination of disabled students  429 public universities have some pronouncements and guidelines on disability in some of their policies and regulations. All of the five “old” public universities4 have adopted a policy on disability. At the time of writing, some of the newly established universities have draft disability policies; for instance, Soroti University has disability provisions in some of its policies (e.g., admission, students code of conduct, distance and e-learning, ICT). Even those universities that have adopted policies on disability show a variation in the target population that the policy protects and how the policies are enforced or coordinated. While Makerere University’s policy on disability focuses on disabled students, Kyambogo University’s policy focuses on both disabled staff and students. Kyambogo University’s policy on disability provides for the establishment of a Disability Support Centre (DSC) where support services for disabled students, staff and special needs are coordinated and offered. Its mandate is to promote effective inclusion and participation of disabled staff and students in all activities of the university. The DSC thus addresses the mobility, accessibility, education, communication, sport and recreation needs of disabled students and staff. It does this by raising disability awareness within academic units for the reasonable accommodation needs of disabled students and with Human Resources for reasonable accommodation needs for disabled staff. It further identifies, assesses and guides disabled students. The Makerere University Business School (MUBS) disability policy establishes the Technical Advisory Disability Committee (ADC) to enhance the accountability and effectiveness of disability inclusion at all levels of MUBS. Among other tasks, the ADC is in charge of developing and establishing monitoring and evaluation mechanisms for disability inclusion in line with the policy and other applicable laws. The ADC is operational with one staff member designated to coordinate the activities of the ADC. In some cases, The Dean of Students’ office coordinates disability policies. The absence of an established structure outside of this for disabilty issues may lead to an incomplete disability inclusion approach. The Dean of Students’ office is limited to student welfare and does not cover education provisions. The absence of policy bodies established exclusively for disability mainstreaming limits the effectiveness of university disability policy. In the Baseline Survey on Disability in Makerere University, Nampewo and Musoke (2019, p. 8) observe: The infrastructure for disability mainstreaming in the university is largely lacking, starting with the absence of the Disability Support Centre as well as college level committees. This makes disability planning and monitoring difficult.

In sum, the implementation of disability laws in Uganda’s higher education system is mixed. As it stands most disabled students do not have access to STEM subjects nor to private universities. Against this background, our chapter aims to understand the lived experiences of disabled students at various Ugandan unviersities to shed light on the implementation of inclusive education as a human right.

4. METHODOLOGY To examine how Ugandan universities apply equality and non-discrimination principles in their practices, we aim to present the feelings and opinions of disabled students studying at Ugandan universities. A qualitative research approach that combines emancipatory research principles with exploratory and descriptive research designs was most suitable in the study.

430  Research handbook on disability policy Ethical considerations in line with the requirements of social sciences research dealing with human beings were adhered to. The qualitative approach provides insights into the experience of higher education in Uganda (Silverman, 2006, 2013). An emancipatory approach was chosen to involve participants more fully in the study. Scholars in disability studies are arguing that empirical research on disability should include emancipatory elements because many traditional empirical research projects treat disabled participants as passive subjects of research (Noel, 2016; Oliver, 1997; Stone & Priestley, 1996). Based on this emerging finding we placed our emphasis on engaging participants through interviews (Brinkmann & Kvale, 2015) and focus group discussions to identify issues affecting their time at university and how they addressed them. Interviews and focus group discussions enabled us to explore various aspects of the lived experiences of disability inclusion. Additionally, both authors are disabled and can therefore empathize with the participants and draw on their experiences in empowering them. We had three groups of participants to gain a breadth of insights: we interviewed (1) those in charge of disability issues at four public Ugandan universities; (2) one disabled staff representative in a public university council; and (3) disabled students from different faculties of one Ugandan public university among the four universities selected. Interviews were held with 18 students (physical disability (6), hearing impairment (4), visual impairment (5), medical-related disabling conditions (3)). We further conducted two focus group meetings with 21 and 9 students, respectively. The emancipatory approach included focus group discussions targeted at leaders of disabled students. The focus groups involved training them on disability advocacy in higher education and relevant disability laws in Uganda to empower them in raising disability awareness within the university.

5.

EXPERIENCES OF INCLUSIVE HIGHER EDUCATION IN UGANDA – VOICES FROM THE PARTICIPANTS

a.

Support Services for Disabled Students and Provision of Reasonable Accommodation

Through interaction with the participants, we found that support services provided by public universities to disabled students vary from university to university and depend on the type of disability, availability of funds, awareness of the university of the specific needs of a disabled student, or the funding source of the student – either government sponsored or privately sponsored. Generally, government-sponsored students are entitled to disability support while privately sponsored students are at the discretion of the university. In some cases, support entirely depended on the discretion of individual staff members. Four of the [disabled] students have partial visual impairment, one is hard of hearing, and the rest have physical disability or psycho-social disabilities. We do not have support for staff with disability. We provide students with some financial support and also advise them to rent nearby hostels. We have just approved a policy on disability and we do not assess students with disability. We do not have sign language interpreters, no sighted guides and no personal assistants for students with disability. (Designated staff for disability as well as a Representative of disabled people in one of the Public University Councils)

Exploring equality and non-discrimination of disabled students  431 Whereas universities have policies on disability and support services for disabled students, they are challenged with providing the individualized support that students with disability often require (reasonable accommodation). A student who attended two different unviersities shared their experiences: This is my second university in pursuing a bachelor’s degree! I got the opportunity through the district quota system to pursue a degree in one of the public universities. At my previous university I did what I could in academics for three years but I did not graduate. The attitudes of some lecturers, inaccessible lectures, the university environment and a lack of provisions to accomodate my disability requirements during lectures and in assessments (tests and end of semester examinations) didn’t allow me to complete successfully. I am capable of attaining a degree within the required 3 years, if the university were to provide an environment that meets my disability requirements. [Even though the second university is seen as more inclusive] I still experience being greatly disadvantaged. […] For example, I cannot write, so I opted to record the lectures. However, some lecturers do not want their voices to be recorded. This prevents me from capturing some of the key takeaways during some lectures. (Disabled Student)

The experience of this student in particular, demonstrates that they suffered all forms of disability discrimination prohibited in CRPD articles 2 and 24 and in the Ugandan laws. Negative attitudes by some lecturers, limited knowledge by the universities of the student’s individualized needs in teaching, learning and assessment, stigma, violence and harassment from some staff negatively impacted this student’s experiences at both universities. The experience illustrates the failure by the two universities to design, in line with transformative equality, appropriate measures to reasonably accommodate the student’s needs. During the COVID-19 pandemic, it further became apparent that some universities were unable to cater to or were unaware of inclusive online learning provision, creating a significantly negative impact on the learning progression of the student. One student observed: During online teaching, the university did not provide us with sign language interpreters. My sign language interpreter in the village knows little English and is unable to interpret for the lecture. Because of this, online teaching excludes me. I am waiting for lecturers to print the notes for me. (Student)

Other participants recounted that even though their university policy provided reasonable accommodation for exams, such as extra time, this was followed according to the discretion of individual academic staff members. I find writing challenging. I write slowly because of my hand. In examinations, although there is a policy of providing an additional 45 minutes to disabled students, some faculties do not honour this policy. Invigilators feel we disturb them. [Their attitude is] Do not tell me about people with disability. Do not disturb me. During that examination my test answer script was not collected, because I continued doing the test beyond the stipulated time. (Student)

The accessibility needs of students with disability are rarely considered in the allocation of rooms for lectures and even in the examinations. One student recounts: Sometimes lectures, tests and examinations are conducted in the rooms upstairs. We students on wheelchairs cannot access those rooms as there are no lifts. We rely on other students to carry us up to the rooms. It is an inconvenience being carried up the stairs to the lecture rooms. (Student)

432  Research handbook on disability policy Similarly, sometimes staff members are not made aware of a student’s needs as this conversation between the first author and another academic highlights: I am just learning that this student is hard of hearing when the student is now in the second year. How has this student been accessing lectures? Honestly, I am not sure whether this student is learning. (Academic)

In similar situation one staff member remarked: In the last field practice, one student almost missed out on participating. None of the staff in the department knew that the student is hard of hearing [...] He did not get information about the field practice. I had to arrange with the district officials for this student’s placement. Luckily for this student, the district officials accepted, which they rarely do without official communication from the university. If they had refused, this student would have missed the field practice and this would have postponed the student’s graduation for an academic year. (Staff)

Some students expressed their frustrations about the lack of understanding about their condition and needs. For instance, some students commented on provided transport to get across campuses but remarked that the tuktuks used for this transport could not carry their wheelchairs. Others for instance recounted: As students with asthma, we have found that nobody understands the requirements of our medical condition. During examinations, some invigilators do not allow us to enter examination rooms wearing scarfs and sweaters. These invigilators do not know that during cold weather, we are seriously affected in the cold examination rooms. (Student)

Furthermore, numerous accounts highlighted the overall lack of disability awareness or prevailing prejudice in regards to different disabilities: I was assessed for admission by PUJAB through a disability scheme under the affirmative action admission policy, and I was admitted to my first choice of courses at this university. I reported to the university and completed registration at the faculty and central registration. During my first lecture, one of the lecturers asked me, “Man, what are you doing here? Are you among the students admitted for this course, this year?” I said yes. The lecturer asked me to go with him to the Head of Department. At the office, both took me through the course units and they explained to me that there are course units they are unable to teach me. They confessed. They advised me to change courses. (Student)

6.

IMPLICATIONS AND CONCLUSION

Every year, the number of disabled students joining Ugandan universities increases. This is largely attributed to the government’s affirmative action policy on the admission of marginalized groups of students to universities and specific considerations on disability in the government loan scheme for students. Against this background, our chapter took a human rights, equality and non-discrimination perspective to argue that universities ought to proactively prepare to facilitate inclusive learning for disabled students on and off campus. As part of these efforts, universities need to progressively develop internal institutional frameworks to ensure the inclusion of disabled students in all programmes and activities of the universities. These institutional frameworks include disability policy, provisions on disability in the university

Exploring equality and non-discrimination of disabled students  433 programmes, disability centres, staff designated to coordinating disability mainstreaming, and advocacy associations of disabled students or staff. Our study found that the four universities sampled have one or all of these institutional frameworks. However, when exploring the lived experiences of students at Ugandan public universities, we found discrepancies between policies and their implementation. We conclude that while Uganda has progressive disability laws and acknowledges the human right to education, as of the time of writing, Ugandan public universities have not achieved disability mainstreaming. Specifically, we highlight that failures about implementation, the lack of internal processes to encourage inclusion and attitudes of staff members constitute significant barriers to this objective. In addition to funding shortages, we argue that cultural and societal stigma and the misconception of disability are strong factors in the discrimination and ill-treatment expressed by our participants. In other words, the affirmative action policy seemingly does not enable disability inclusion in the universities as it falls short in implementation; structural barriers still exist against disabled people. While it supports disabled students’ admission into university, universities are not equipped sufficiently to then provide the necessary required provisions for those students. This is worse in lab and practice-based degrees. Given that universities in Uganda operate within affirmative action policy requirements and are governed by progressive disability laws, we recommend the following to ensure disabled people access university services without discrimination on the basis of equal opportunities. Awareness Raising and Capacity Building of Staff on Disability Inclusion: Universities need to increase disability awareness among teaching staff with a specific focus on understanding the individualized needs of disabled students. This will allow them to provide students with reasonable accommodation requirements in teaching and learning. Given the cultural context in Uganda, disability awareness training should address misconceptions and prejudice around disability. Learning support services should receive training on different forms of reasonable accommodations in learning so as to better support teaching staff. This awareness raising should also address the perception that disabled students are less capable in studying STEM subjects. Here, the focus should be on an abilities approach (Wolbring, 2008) that highlights the abilities of potential prospective students. Furthermore, such trainings should educate staff on reasonable accommodations that can be made to labs and practical work to accommodate disabled students. Disability Inclusion in ICT: Each university in Uganda has an established ICT centre and is moving towards digital teaching and learning and digital libraries with e-resources. The move from physical classes to online classes to curb the spead of COVID-19 has heightened this need with government. However, ICT in universities does not cater to adapted and assistive technologies. We therefore recommend that universities or governmental agencies support learning for disabled students by providing them with the necessary assistive technology. Furthermore, due to the increased move to online learning, teaching staff need to also be trained in inclusive online teaching. Online teaching comes with additional challenges for some disabled students and therefore teaching styles and materials need to be adapted. University Disability Centre: We recommend that Ugandan public universities establish and strengthen the disability centres to coordinate the effective inclusion and participation of disabled people in the university. Among others, the disability centre’s duties would be to: i. Register and assess disabled staff and students to determine their barriers to participation and reasonable accommodation needs.

434  Research handbook on disability policy ii. Advocate for and sensitize the university community on the needs of the disabled students and staff within the university. iii. Identify structural, policy and attitudinal barriers that may be disadvantaging disabled staff and students in the university and design measures for their minimization or removal. iv. Coordinate social and academic services of the university to ensure that disabled students and staff get the necessary support. v. Interact with teaching staff in each academic unit where there is a disabled student and staff to ensure that they are provided with necessary support for their academic and social participation. Absence of such a coordinating unit, as observed by Nampewo and Musoke (2019), means a university has no institutional structure for mainstreaming disability and this makes disability planning and monitoring challenging. While we focus on public universities in this chapter, our recommendations are equally relevant to private universities. These measures will enable the Ugandan higher education sector to implement transformative equality by systemically addressing the roots of disability discrimination. It will then enable Ugandan students to enact their human right to education.

NOTES 1. 2.

3. 4.

Start of endnote. See para. 15, UN Committee on Economic, Social and Cultural Rights (CESCR), General Comment No. 5: Persons with Disabilities, 9 December 1994, E/1995/22, available at: https://www.refworld.org/docid/4538838f0.html [accessed 23 April 2021]. End of endnote. Start of endnote. Any justification of the denial of reasonable accommodation must be based on objective criteria and analysed and communicated in a timely manner to the disabled person concerned; and also related to the length of the relationship between the duty bearer and the rights holder (CRPD G. C. 6, para. 27). End of endnote. Start of endnote. For example, Braille papers. End of endnote. Start of endnote. For the purpose of this chapter, these are universities established before 2010. End of endnote.

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Exploring equality and non-discrimination of disabled students  435 Emong, P. (2014). The Realization of Human Rights for Disabled People in Higher Education in Uganda: A Critical Analysis Drawing on the UN Convention on the Rights of Disabled People. University of Leeds. Emong, P., & Eron, L. (2016). Disability inclusion in higher education in Uganda: Status and strategies. African Journal of Disability, 5(1). https://doi.org/10.4102/ajod.v5i1.193 ​ ​ ​ ​ ​ ​ ​ Ferri, D. (2018). Reasonable accommodation as a gateway to the equal enjoyment of human rights: From New York to Strasbourg. Social Inclusion, 6(1), 40–50. https://doi.org/10.17645/si.v6i1.1204 ​ ​ ​ ​ ​ ​ ​ Goldschmidt, J. E. (2017). New perspectives on equality: Towards transformative justice through the Disability Convention? Nordic Journal of Human Rights, 35(1), 1–14. https://doi.org/10.1080/ ​ ​ ​ ​ ​ 18918131.2017.1286131 ​ ​ Guzu, B. (2014). The state of access to education by women and girls with disabilities: The case of Uganda. In The 58th Session of the UN Committee of CEDOW. Geneva, Switzerland. Kaahwa, Y. T., Mugagga, A. M., Ezati, B. A., & Itaaga, N. (2019). Socio-economic disparities and access to government university scholarships: The case of the district quota system in Uganda. International Journal of Education and Research, 7(5), 117–126. Kivijärvi, S., & Rautiainen, P. (2020). Contesting music education policies through the concept of reasonable accommodation: Teacher autonomy and equity enactment in Finnish music education. Research Studies in Music Education, 1321103X2092414. https://doi.org/10.1177/1321103X20924142 ​ ​ ​ ​ ​ Kwesiga, J. C., & Ahikire, J. (2006). On student access and equity in a reforming university: Makerere in the 1990s and beyond. Journal of Higher Education in Africa/Revue de l’enseignement Supérieur En Afrique, 4(2), 1–46. Retrieved from http://www.jstor.org/stable/24486258 ​ ​ ​ ​ ​ Lawson, A. (2017). Reasonable accommodation in the UN Convention on the Rights of Disabled People and non-discrimination in employment: Rising to the challenges? In C. O’Mahony & G. Quinn (Eds.), Disability Law and Policy: An Analysis of the UN Convention (pp. 359‒374). Clarus Press. Lawson, A., & Beckett, A. E. (2021). The social and human rights models of disability: Towards a complementarity thesis. The International Journal of Human Rights, 25(2), 348–379. https://doi.org/10 ​ ​ ​ ​ .1080/13642987.2020.1783533 ​ ​ ​ Nampewo, Z., & Musoke, H. D. (2019). Baseline Survey on Disability in Makerere University. Kampala, Uganda. Noel, L. (2016). Promoting an emancipatory research paradigm in design education and practice. In Proceedings of DRS 2016, Design Research Society 50th Anniversary Conference. Brighton. NUDIPU. (2021). Impact of Affirmative Action Policy for Disabled People Joining Public University Education and their Employment after Studies in Uganda. Kampala, Uganda. Odaga, G. (2020). Affirmative action and women in Uganda’s public university education. Higher Education Policy. https://doi.org/10.1057/s41307-020-00189-8 ​ ​ ​ ​ ​ ​ ​ ​ Oliver, M. (1997). Emancipatory research: Realistic goal or impossible dream. Doing Disability Research, 2, 15–31. Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. Onsongo, J. (2009). Affirmative action, gender equity and university admissions: Kenya, Uganda and Tanzania. London Review of Education. https://doi.org/10.1080/14748460802700710 ​ ​ ​ ​ ​ Quinlivan, S. (2019). Reasonable accommodation. In The Right to Inclusive Education in International Human Rights Law (pp. 169–189). Cambridge University Press. https://doi.org/10.1017/ 9781316392881.008 ​ Silverman, D. (2006). Interpreting Qualitative Data: Methods for Analyzing Talk, Text, and Interaction. Sage. Silverman, D. (2013). Doing Qualitative Research: A Practical Handbook. Sage. Stone, E., & Priestley, M. (1996). Parasites, pawns and partners: Disability research and the role of non-disabled researchers. The British Journal of Sociology, 47(4), 699–716. https://doi.org/10.2307/ ​ ​ ​ ​ ​ 591081 Thomas, C., & Corber, M. (2002). A journey around the social model. In M. Corker & T. Shakespeare (Eds.), Disability/Postmodernity: Embodying Disability Theory (pp. 18–31). Continuum. UBOS. (2019). Persons With Disability Bridging the Gap through Statistics. Retrieved from https:// www.ubos.org/wp-content/uploads/publications/09_2019DISABILITY_MONOGRAPH_-_FINAL ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​​ ​ .pdf

436  Research handbook on disability policy Union of the Physically Impaired Against Segregation (UPIAS) & Disability Alliance (1976). Fundamental principles of disability: Being a summary of the discussion held on 22nd November 1975 and containing commentaries from each organization. UPIAS/Disability Alliance. UN Human Rights Committee (HRC) (1989). CCPR General Comment No. 18: Non-discrimination, 10 November 1989. https://www.refworld.org/docid/453883fa8.html ​ ​ ​ ​ ​ ​   Wolbring, G. (2008). The politics of Ableism. Development, 51(2), 252–258. https://doi.org/10.1057/ ​ ​ ​ ​ ​ dev.2008.17 ​ ​ World Health Organization (‎1980)‎. International classification of impairments, disabilities, and handicaps: A manual of classification relating to the consequences of disease, published in accordance with resolution WHA29.35 of the Twenty-ninth World Health Assembly, May 1976. World Health Organization. https://apps.who.int/iris/handle/10665/41003 ​ ​ ​ ​ ​ ​ ​

37. Participation in personalization of minority cultural groups: lived experience and diversity in the UK Martin Partridge, Mahuya Kanjilal and Elaine Arnull

INTRODUCTION In order to address known inequalities in social care in the United Kingdom (UK) we should address and rethink our approaches. Consideration of insights from the Global South may help us reposition our understanding and approach (Liu, 2017). Doing so would enable us to position our social care policy within the international framework of the United Nation’s (UN) Sustainable Development Goals (SDGs)1 which Horner (2020) argues were developed across a wider cross section of countries and incorporate a wider range of understandings than earlier conceptions of human rights. The SDGs outline the actions needed to support and enable people across all societies in the world. They include a holistic understanding of social and health care needs and reflect what ‘all countries can do’ (Horner, 2020, p. 415); incorporating conceptions of wellbeing, ability, disability and outcomes across a range of holistic areas that affect a person’s wellbeing. As Horner (2020) points out, what separates countries in the Global South and North has, in some vital areas, become what also joins them, with shared challenges across a range of areas; social and health care needs being principal amongst these. The gaps that were closing between countries in the Global North and South across a range of outcomes have now been impacted by the COVID-19 Pandemic and its effects worldwide (Pew Research Center, 2021). There are growing wealth differentials within individual countries and sustained or persistent poverty and health inequalities for a proportion of their populations. Additionally, within both the Global North and South there are increases in the percentage of highly educated populations and, for some, high levels of unemployment within those populations within individual countries (Pew Research Center, 2021). These shared challenges in the provision and equitable distribution of social care and health care have been exacerbated by the global pandemic. The SDGs may imply a holistic conception of social and health wellbeing (Horner 2020). Nettleton (2021) has argued that holistic models challenge common conceptions of wellbeing informed by health-based, biomedical models, that are reductionist in intent and effect. In this chapter we consider if a holistic model of wellbeing could enable us to adapt our understanding of the provision of social care to disabled people within the framework of the UK policies of personalization. Our first case study with Chinese communities in England considers why personalization has to date had low take-up by minoritized ethnic communities. Our second explores how practices from the Global South of participation and grassroots action (Horner, 2020) can be used to transform UK social care policy and practice through the incorporation of co-production. We propose this could transform personalization and direct payments practice by incorporat437

438  Research handbook on disability policy ing the perspectives of minoritized and working-class communities within the UK and thereby making social policy and social care practice more inclusive of disabled people and increasing equality of access and provision. In this chapter, we draw on Liu (2017) to consider how we can transport theory, transform theory and propose new concepts. Unlike Liu (2017) we are considering how theory informed by perspectives from the Global South can transform practice in the Global North. Further, we are seeking to apply ideas to research and practice with disabled people from the majority community and those from communities who have immigrated into the UK, or who are British but with other important heritage or cultural community influences. Our chapter reflects upon our empirical data and asks, could we transform personalization practice by being more inclusive and holistic and thereby introduce new ways of doing things, facilitating a better take-up of services and making disability policy and practice more relevant to the whole population?

DISABILITY STATISTICS IN THE UK The Equality Act (2010) says a person is disabled if they report a long-standing illness, disability or impairment which causes substantial difficulty with day-to-day activities. Of the 8.4 million people of working age (16–64) in the UK, 20% reported that they were disabled in October to December 2020, which is an increase of 327,000 from the year before (House of Commons, 2021). Disabled people therefore form a substantial proportion of the working age population. Of those who are of pensionable age the proportion rises to 46%; for children the proportion is 8% (Family Resource Survey, 2018). The numbers of disabled people from minority cultural groups in the UK are widely unreported. However, Disability Living Allowance data evidenced low take-up from ethnic minority communities (UK Government, 2022) such as 5% from ‘Asian’ families and 6% from ‘Black’ families.

DISABILITY MOVEMENT In the UK the disability movement campaigned for the rights of disabled people nationally and internationally (Campbell and Oliver, 1996). It helped to shape the disability rights that emerged in the UK and create a path of social care reforms that advocated independent living for disabled people (Priestley et al., 2007). In other European countries similar policy reforms occurred around the same time. In the Global South the Disability Rights movement was informed by conceptualizations from the Global North and disseminated by organizations such as the UN Convention on the Rights of People with Disabilities (UNCRPD), International Labour Organization and the World Bank. It may be suggested that subsequent global policy has been influenced by such organizations and disability activists from the Global South (Meekosha and Soldatic, 2011) based on localized concepts of disability. The conception of universal human rights was shaped by the UN Universal Declaration of Human Rights in 1948 (United Nations, 1948). Whilst all rights are applicable to all people (a cornerstone of the Declaration) those particularly relevant to disability are Articles 25,

Participation in personalization of minority cultural groups  439 27 and 29, seeking to ensure the full rights and opportunities for participation in public life, protection and support.

SOCIAL MODEL OF DISABILITY The social model positions people as disabled not by ‘impairment’, but by societal barriers (Oliver, 1983). For example, the design of the built environment may limit access for wheelchair users due to assumptions that all people are ‘able bodied’. Critiques of the social model include its association with Global North accounts of human rights (Meekosha and Soldatic, 2011), arguments that it can harm the individual (Ferguson, 2007) or that it is outdated (Owens, 2015). For others, the fact that many disabled people continue to face challenges maintaining an independent life, with their participation restrained by societal obstacles, highlights its ongoing relevance. Finkelstein (2001), an activist and educator of the social model from the Global South (South Africa), argues that ‘it is society that disables us, and disabled people are an oppressed social group’ (Finkelstein, 2001, p. 2), who should be enabled to live an independent life focused on ability rather than deficits. Disability rights are not universally accepted or denied in either the Global North or South. They remain a contested concept and the dialogue means it is a dynamic area which this chapter reflects and examines through its case studies. The conceptualization of disability under a human rights framework is also contested. This can be seen across regions where some states/countries have not signed up to the UNCRPD for their own political/ideological reasons (Tajikistan, Somalia; United Nations, 2017). Therefore, implementing disability rights, policies and practices based on a human rights model is not simply transferable. Conceptualizations of social and health care, wellness and illness, and individualism vs family/community orientations are multi-faceted. For example, within Chinese culture, family is a central part of the assessment of disability and the provision of care/services (Wah Yeung, Partridge and Irvine, 2015), whilst in India, an example of the impairment model is evident in eight different types of disability defined by the Government of India (National Statistics Office, 2020), which includes seeing, hearing, speech, movement, mental retardation, mental illness along with multiple disabilities and other as a category. In a country where more than 27 million people (Government of India, 2021) are identified as disabled, the government has only started to emphasize welfare for the disabled population as a signatory to the UNCRPD. The impact of international policy frameworks can be seen, but apart from government policy the social concept of disability rights is one which can seem alien in a cultural context in which many people struggle to meet their basic human needs in everyday life (Meekosha and Soldatic, 2011). In contexts in which collective rights are highly placed, agendas such as personalization contained within the Global North policies can appear overly focused upon gaining individual rights and maintaining an independent life. This conceptualization is a product of industrialization and the centring of the individual in theory and practice that has impacted the development of social care policy and provision. Independence and individual rights can be critiqued as self-centred by some countries in the Global South (Meekosha and Soldatic, 2011), meaning personalization is not directly transferable.

440  Research handbook on disability policy We therefore have an interesting melee of ideas in this arena which can be hard to disentangle. The juxtaposition of medical models of disability used in the Global North and South may be challenged by social models of disability and the Disability Rights movement. Alongside this are concepts of participation and innovative responses to social care and health care challenges emerging from the Global South. These responses answer to financial challenges and arise within a context of political participation, social justice and familial and communal responses (Horner, 2020). At the same time, the focus on the individual and the need for personal independence centred within some models in the Global North can seem self-centred and/or isolating for minoritized communities particularly those with family connections to the Global South. In our discussion below and within the case studies we draw out these juxtapositions, but now we turn to the UK policy framework.

PERSONALIZATION AND DIRECT PAYMENTS Personalization is aimed at improving the wellbeing of vulnerable people by giving them greater choice and control in how they consume services, rather than positioning them as passive recipients of services. Personalization should involve the transformation of the service user from a consumer to an employer and co-producer of services. ‘No rights without responsibilities’ was a key element of Direct Payments (DP), a cornerstone of the UK’s Personalization agenda. DP (Community Care Direct Payments Act 1996) were introduced by the Conservative Government but implemented by a newly elected Labour Government (1997) as part of social care reform aimed at reducing dependency on third-party services. They replaced processes whereby services were decided for disabled people with little control or choice (Riddell et al., 2005). However, a disabled person’s right to live their daily life according to their own choice is not reflected in the uptake rate of DP across the UK. Just 27.9% of social care service users in England have opted for DP (LG Inform, 2020) because of disparities in local policy, knowledge of the DP process and eligibility criteria (Stainton and Boyce, 2004). The service user movement played a role in the development of DPs and advocated for choice and control for those who used social care services. Stainton and Boyce (2004) in their study with DP users evidenced the benefits of choice and control over the services delivered. However, Riddell et al. (2005) argued that the success of DPs in securing independent living was questionable and its aim was to reduce state responsibility for supporting people with care needs, therefore placing individuals at risk (Ferguson, 2007). Despite the criticisms of DP, the policy of person-centred approaches and person-centred services geared up and gave rise to the ‘Personalization’ model. Across the UK, Valuing People (Department of Health, 2001), Independence, Well-being and Choice (Department of Health, 2005), Our Health, Our Care, Our Say (Department of Health 2006), Valuing People Now (Department of Health 2009), and A Vision for Adult Social Care (2010) all followed this trajectory which emphasized a person-centred approach. In the UK one might see this as resulting from the longstanding efforts of disability rights reformers. In 2012 ‘Caring for Our Future: Reforming care and support’ (Department of Health, 2012) was launched. This was based on the two principles of minimizing people’s need for formal care and of people being in control of their own care. It promised to offer:

Participation in personalization of minority cultural groups  441 (i) (ii) (iii) (iv) (v)

clear information to enable people to make good choices about care, people developing their own care and support plan, people in control of their own budget, people’s views heard and services improved, people choosing between a range of options or creating their own.

It was said services should be delivered based on individual choice that could better meet the needs of individuals, rather than supplying available services to everyone regardless of specific needs (Malbon, Carey and Meltzer, 2019).

MULTICULTURALISM AND SERVICES The human rights issues revealed by the critical intersection of disability and multiculturalism as discourses of difference suggest a gap in current theory. Neither discourse has properly accounted for the other, much as the Disability Rights movement and conceptualizations from the Global South and North remain contested. Jakubowicz and Meekosha (2003) suggest that minority groups such as disabled people and those from different cultural backgrounds are doubly marginalized. Over the last 50 years growing numbers of people have settled in the UK from other countries (Hesse, 2000) with their own sets of values, norms and beliefs (Kymlicka, 1995). Increasingly, the UK is seen as a multicultural country (Hesse, 2000) whose legislation and policy emphasize multicultural approaches as a guide for service delivery (Her Majesty’s Government, 2000; Mir et al., 2001). Yu (2009) has argued that multicultural services should be culturally competent, with practitioners aware of cultural issues and the differences that exist at individual and family levels. Cultural competence is defined as effective working with those from cultures different from one’s own (O’Hara, 2003; Stanley, 2006), collecting appropriate cultural information, being able to acquire knowledge of culturally specific practice and engaging in cross-cultural relations (Campinha-Bacote, 2002). ‘Culture Practising’ requires service providers and practitioners to understand their own cultural influences. Nonetheless, numerous studies have shown common and recurring issues such as practitioners and services holding stereotypical views, giving lower priority to people from minority groups (Ex Anima Training and Research Consultancy, 2011), having few staff from minority cultural backgrounds (Chahal, 2004; Caton et al., 2007), lack of awareness of local services on offer (Mencap, 2006), or little baseline information (Ex Anima Training and Research Consultancy, 2011). The impact on people from minority cultural groups is to increase their negative experiences, leading to feelings of cultural isolation and powerlessness (Ex Anima Training and Research Consultancy, 2011). Social policies such as personalization and DP should have addressed these deficits, but the take-up amongst minority cultural groups has remained low. To explore personalization and the take-up of DPs we draw on two case studies that demonstrate the complex nature of disability, the contested conceptualization of personalization and disability rights and their accessibility to minoritized communities. The first case study is based on three different services in and around a city in the Midlands, England. Two services were Chinese welfare organizations and the other, mainstream provision for adults with learning disabilities. It draws together the findings to consider how

442  Research handbook on disability policy services worked with people with learning disabilities from Chinese backgrounds, focusing on ideas of culture, context and the inadequacy of service provision. The second case study focused on the accessibility of DP from service users’ perspectives and co-production as a tool to improve practice. It was a participatory project in the West Midlands of England involving a service users’ group for a local authority, some of whom were drawn from working-class and poorer communities in England for whom the DP process felt inaccessible. This project contributed to improving DP access for recipients. It demonstrated how co-production which originated as a concept in the Global South could be utilized to improve disability services in the Global North.

CASE STUDY ONE This study describes two culturally specific and one mainstream service used by people with learning disabilities from Chinese backgrounds. It addresses the lack of research available on the service and inclusion experiences of people with learning disabilities from Chinese backgrounds in England. It explores the importance of taking cultural contexts into account in policy development and service practices and considers the importance of culturally specific services for people with learning disabilities. A qualitative ethnographic methodology involved participant observations, semi-structured interviews and ethnographic analysis to explore the ways in which Chinese-specific services and mainstream organizations included adults with learning disabilities from Chinese backgrounds. Key informants provided specific cultural knowledge that added to the researcher’s observations and understanding of participants’ experiences of the service they used. Participants were men and women aged 18 and over from Chinese backgrounds. In some cases, an interpreter was used. Ex Anima Training and Research Consultancy (2011) suggested people with learning disabilities from minority cultural groups are less likely to use mainstream services compared to the majority group and are more likely to become isolated from the host community. However, this has been interpreted by some as people from minority cultural groups living ‘parallel lives’ with the majority community (Cantle, 2001). While Cantle’s conclusions have been criticized (White, 2011), and do not refer specifically to people with learning disabilities, the idea that people live within their own specific cultural context is important. In a Chinese service centre in the UK, a culturally specific service was offered: [However, learning] disability is an area – is quite hard for us to develop anything – it’s very specialist area, for example I’m recently organizing user activities, I know of this family – they have this young boy – but I don’t even dare to invite him to come – cos I’m not sure – if I invite will he enjoy… will he be able to mix with the rest – I don’t have that confidence to be able to sort of support him, I do have the experience how to approach young people, and try to build up some sort of communication but – with this young boy, I just don’t feel confident – I don’t get the training and we cannot really afford that type of training for me – but that’s quite sad – when I think of him, I think I am organizer of user activity for Chinese youths… I really want to invite him to come cos you can tell his life is already so much more narrowed than normal kids… (Interview with Amanda, Manager)

The Chinese service centre was not a service for people with learning disabilities and Amanda’s views provide an insight into how the organization approached this group; furthermore, no formal support or training was provided to staff about how best to engage people with learning disabilities.

Participation in personalization of minority cultural groups  443 Within the Chinese service centre, there was an impression of people coming together who had common interests and issues despite the many different Chinese languages and dialects used by its staff and members. Activities in the service were designed to link with aspects of the experience of people identifying as coming from Chinese backgrounds. The world of the Chinese service centre felt closed, a safe place to be and share common interests, to enjoy food together and become involved in activities and festivals. The only real contact with the wider host community seemed to be in terms of referrals and advice to specific health and welfare services. However, Harmony Courtyard had developed a different approach, as a culturally specific service: The first client [with learning disabilities] came to us because she used to be with her mother [who is a resident] quite regularly but that’s OK, she is suitable for here so we need to assess her, see what we can do... The first thing I need to do is to see if I can take her because of her age, and secondly I need to see what we can offer, what the needs are. So when we have done all these then we realise, OK she fits into our criteria in a sense that at that time we were thinking of expanding, basically trying to develop the Chinese services, not restricting ourselves to one particular group but to open it up... (Interview with Song-Tao, Manager)

The Chinese-specific service had included a person with a learning disability in response to the need of a parent who had become a resident in the sheltered accommodation. Song-Tao saw this as a way of expanding the service and later also commented that there was a limited range of specific services available for this group of people. He also saw it as a way of maintaining the family connections of residents. However, Harmony Courtyard was a service that was primarily designed for, and catered for, Chinese elders. Harmony Courtyard only provided for people with learning disabilities who could live independently within the scheme and who had close family support. However, people with learning disabilities were not included or consulted about daily activities or the running of the service, and were kept in the margins, with the family seemingly having a lot of influence over their lives. People with learning disabilities gained access to the service through family links. Some families lived in the same scheme with other family members who had a former association with the service and who offered practical support such as shopping, taking them to appointments and running the administration of everyday life. … this service is for older people and for [people with learning disabilities] sometimes it could be a little bit, like things we do the activities that we do might be too old for them you know what I mean… a lot of here are older people and I find a lot of people with learning disabilities are younger so it’s sort of like they have to go out with older people, they need a bit more younger, I just find maybe different activities… (Interview with community support worker 2)

As people with learning disabilities commented that they were not asked for their opinions or thoughts, and their calls to be supported more in activities which were age-appropriate were not responded to, the service continued to treat people with learning disabilities as ‘fringe dwellers’ despite being able to offer a cultural context which was familiar to most of the Chinese residents. Chestnut Grange provided a mainstream service specifically for people with autism and learning disabilities. The organization provided only for those who were assessed as dependent. Among the residential and day service staff there seemed to be a sense of confidence in providing for and working with this group. Staff at Chestnut Grange seemed to have much

444  Research handbook on disability policy more experience in working with people with autism and learning disabilities and received regular training from the parent organization. However, it seemed that the service, despite some effort, provided a generic provision for its residents in relation to consideration of their individual culture and language. There was a lack of clear, informed direction in respect of Tang-Wei’s cultural diversity (唐衛 Tang-Wei, aged 42, had autism and learning disabilities and was originally from Hong Kong and the only Chinese person in the service), with the most common issue being a failure to provide someone who spoke Tang-Wei’s language. There was a lack of commitment to promoting his speech and language through communication aids as provided by speech and language therapists. There was also no evidence of written material in traditional script, nor were there any ‘Chinese’ pictures, photographs or other material to link Tang-Wei with his cultural roots. There was little choice of Chinese foods or snacks, limited links with other Chinese people and limited or no visits to Chinese festivals or gatherings. We need to know more information; [there] is no information available. I want to know more about what’s the best thing to do. We need to know the theory for working with people with [learning] disabilities from Chinese backgrounds… (Interview with Phillip, Assistant Manager, Chestnut Grange)

Phillip, the assistant manager of Chestnut Grange, acknowledged that they were unaware of how to work with people with learning disabilities from a Chinese background. He also recognized there was a gap in their cultural knowledge of Chinese groups. The findings from the study revealed that the experience of people with learning disabilities from Chinese backgrounds in accessing services was different for those accessing either culturally specific or mainstream services. Within the culturally specific services family members were seen to be of primary importance for the person with learning disabilities accessing and using the services. However, across all the services in this study, people with learning disabilities from Chinese backgrounds experienced life as ‘fringe dwellers’, as people who had a physical presence with limited social inclusion. The importance of services sharing knowledge and resources in order to provide a more inclusive place for people with learning disabilities from Chinese backgrounds was evident, especially if people were to use direct payments. The study demonstrated a gap between culturally specific and mainstream services in terms of provision for people with learning disabilities from Chinese backgrounds which needed to be bridged.

CASE STUDY TWO As we have discussed, a way of approaching disability rights in a more open and culturally informed way may be through participation and co-production, which the second case study explores. ‘Mend the Gap’ was a participatory research project involving people with lived experiences of DP services in a West Midlands council with the aim of developing a more flexible approach to DPs, inclusive of lived experience. Twenty-six people from different backgrounds and levels of DP expertise participated in five sessions from January to March 2020. DP service users, carers of DP service users, social workers and Social Work students formed the core delivery group. In terms of age distribution, the youngest participant was in their early 20s and the oldest in their 70s. Participants had varied physical and learning disabilities and were on different stages of their DP access journey; hence this group was ideal for

Participation in personalization of minority cultural groups  445 understanding what was working across DP service provision and the complexities associated with the process. In the study participants with care and support needs described a lack of confidence in connecting with the current DP system and about becoming an employer if outsourcing plan management support, with little support from the council. They reflected on their struggles, voiced their expectations of the DP process and developed recommendations jointly with other participants through discussion and workshops. This council had experience of working proactively since 2015 with service users in co-production aimed at improving user experience. Despite this the uptake of DP was low, although DP offered greater flexibility and choices for service users over other alternatives. Lower uptake is not uncommon in the UK as only 21.7% of total social care service recipients use DP to meet their care needs. Based on this context, the case study examined personalization principles, aimed to identify the complexities of the DP process and explore its gaps. Interestingly, although all the participants (except one) came from White British ethnic backgrounds (reflective of the general population of this area) the study showed how those from working-class and disabled sections of the population struggled to connect with the DP system and that this was exacerbated for those with learning difficulties. Rabiee, Moran and Glendinning (2009) revealed the benefits of personal budgets for those in receipt of them, but Teater and Baldwin (2014) have critiqued personalization as a rhetorical discourse. Some have argued for co-production (also called deeper personalization) where service users co-design services (Slasberg and Beresford, 2015). Hunter and Titterton (2012, p. 57) argue: The idea behind co-production is that neither the government, public services, nor charities, however seamless the operation, can ‘deliver’ welfare services: families, individuals and communities have to be co-producers of welfare alongside professionals, and not merely recipients.

This suggests that service users are experts, and that carers, families and communities should be included as highlighted in our two case studies: the latter critical to the cultural understanding of many within Chinese communities. Additionally, co-production can raise awareness of people’s cultural norms, values and beliefs surrounding ‘disability’ and enabling professionals and practitioners to develop culturally sensitive and competent practice. Co-production is therefore more open to concepts from the Global South of holistic, shared solutions and as the second case study shows, offers a way of adapting concepts of individualization to a deeper understanding of inter-connectedness. During Mend the Gap, participants highlighted how they experienced social care and DPs: The system drives the process, rather than focus on individuals. System got to work with us, rather than we slave to the system. (Participants of case study)

Stainton and Boyce (2004) and others such as Priestley et al. (2007), Slasberg and Beresford (2015) and Malbon, Carey and Meltzer (2019) use key words such as freedom, choice, control, independent living, improved self-esteem, lifestyle opportunities, personalized, individualized, consumer focused, tailoring support for one’s own needs and exercising choice and control, when discussing personalization and DPs. The words mirror the objectives of personalization, but this case study acted as a reality check. Findings showed people had a lack of knowledge of the eligibility criteria for DPs, they experienced inflexible support plans and there was a lack

446  Research handbook on disability policy of clear communication with them which included the use of policy-focused language and spending as a driving force rather than the service user’s wellbeing. Stainton and Boyce (2004) had previously shown the main reason of not opting into DP was a concern about eligibility criteria and a lack of knowledge on how to access it and their findings were supported in the second case study. Service users said: I could never access information sent to me. The entire process is complex, terminology difficult to understand specially on the DP letter. The struggle trying to find which bits of information are important to me. (Participants of case study)

Difficulties accessing information about the DP process included the council providing generic letters and guidance to potential and current service users, no targeting of individual need or use of accessible language. Further, although participants in this study had English as a first language, the information was written in such a way that some, including those with learning disabilities, could not understand it. One participant confessed that the letters were so overwhelming that she had never opened any of the documents sent to her for the last 12 years. The study thereby highlighted the failure of an important aspect of personalization – that service users were not receiving accessible information about care choices to live their lives independently. Maglajlic, Brandon and Given (2000, p. 101) have suggested information related to DP should be ‘straightforward, personalized – addressing individual needs, presented in a variety of formats; tape, picture, booklet, symbols, video’. However, the second case study revealed the ongoing lack of accessible information. Service users’ recommendations to improve current practice included the use of simple words with picture or symbols illustrating the process of DP, plus the use of audio and video guidance: Individual story is missing on the support plan. We don’t want generic care plans; we want having enough flexibility within. Feel criminalized when using a DP. (Participants of case study)

The mechanisms of DP are complex and work in several layers. Behind the individual support plan itself are those processes that include legislation, assessment of individual needs, the available budget in the local authority and the availability of services in the market. Assessments of care needs are undertaken according to the Care Act (2014) and determine personal budgets. Individual needs are also ‘seen through the prism of resources’ within local authorities (Slasberg and Beresford, 2015, p. 480). However, service users hardly got to know this process. The support plan is the only vehicle they directly engage with, fulfilling their care needs within the available personal budget. This case study revealed that service users were not aware of the eligibility criteria which are the building blocks of the assessment and support plan. On the other hand, local authorities are not transparent about the eligibility criteria, availability of resources and implications for the personal budget. One participant explained her bewildered state after knowing about eligibility criteria for the first time: ‘Imagine if you had an appraisal for a job without knowing what the job title was.’ This gap in knowledge created issues of trust between the two parties.

Participation in personalization of minority cultural groups  447 Support plans should be personalized and offer enough flexibility to meet individual wellbeing. The study found that participants experienced frustration about inflexible support plans. Their ideal indicators for creating support plans included: ● ● ● ● ●

‘unique’ – created and owned by the person with support from the DP team; ‘flexible’ – a live document that catered to individual needs; ‘simple’ – easy management of DP; ‘trust’ – between service users and practitioners; ‘focusing on personal life’ – respecting individual needs and appropriate level of detail; holistic and individualized.

Service users said these creative support plans should include images, symbols and individualized information to enable the implementation of personalization principles for disabled people. The second case study highlighted the complexities of managing a DP and becoming an employer. Appointing PAs (Personal Assistant) to manage day-to-day care needs is quite common and according to participants, this option is flexible and easy to work around individual needs. However, in so doing, DP service users become employers and responsibilities arise such as the need to manage invoices, payments and sickness cover for PAs. Katzman and Kinsella (2018, p. 1436) illustrated these invisible layers of work for service users with PAs, describing ‘administrative work, supplemental work and navigating uncertainties’. Without knowledge and support for managing PAs, many service users struggle to carry this additional burden. The outcome of the second case study is that the local government has taken far-reaching action to ensure continued co-production aimed at achieving changes and improvements in practice. They have changed their vision for direct payments, reviewed information-sharing documents and changed the way they implemented the DP policy. These changes were reflected on by a participant: Having been one of the pilot project recipients, I have spent years trying not to rock the boat and been fearful of losing the independence afforded to me managing my own team of PAs. Having been invited to take part in revamping the way DPs are offered to people in need of support, I have been pleased to have been an active part of the development of the new Direct Payments policy. Raising my head above the parapet, I’ve learned that behind the concrete walls are people who are passionate about helping people to live the lives they want, in the way that they want. (Participant in case study two)

DISCUSSION Our first case study with Chinese communities in England considered why personalization had low take-up by minoritized ethnic communities. Our second case study explored how practices from the Global South of participation and grassroots action (Horner, 2020) could be used to transform UK social care policy and practice through the incorporation of co-production. Brought together, the two case studies indicate how co-production could transform personalization and direct payments practice by incorporating the perspectives of minoritized and working-class communities within the UK and thereby making social policy and social care practice more inclusive of disabled people and increasing equality of access and provision.

448  Research handbook on disability policy The two case studies highlight the complex nature of disability and personalization. Our empirical findings suggest that UK social policy implementation does not go far enough to support the difficulties diasporic communities experience, especially when cultural interpretations of disability are so diverse. Nonetheless, concepts of human rights formed through the SDGs, in which the Global South played a strong part, contain conceptualizations of participation and draw on a holistic conception of well-being. These conceptualizations might usefully transform notions within the UK of disability rights and be more accessible to all members of the UK community, including those from minority cultural groups linked to the Global South. Drawing on holistic conceptions of wellbeing and social care, integrating communities and ensuring participation and co-production could bring to the forefront the complexity of service provision. It could also ensure the availability of culturally specific services and support for service users in different languages to enable them to make decisions for themselves (case study one with those from Chinese communities). Further as the second case study shows, this would also directly benefit disabled people from the majority UK community who also struggle with the language and complexity of personalization and DP. Participatory consultation projects like Mend the Gap show how it is essential to understand the needs of different communities and encourage participation. Disability services should look to transform their models of social care by increasing grassroots activity in a way that enables all voices adapting its practice within a multicultural context. It is argued that the sociology of illness is bound with the cultural beliefs, norms and values of a given group. We asked in this chapter, if this is the case, can we expect the care needs of diasporic communities to be supported in their settled location? We have shown that in the UK this has not yet been achieved despite the introduction of policies such as personalization and direct payments which were born in part from the Disability Rights movement and aimed to give control to the users of services. Our case studies suggest this may be to do with a combination of factors, including the continued prevalence of biomedical conceptualizations of disability in some diasporic communities, alongside notions of disability services appearing overly individualized and decultured to minoritized communities. We suggest that Liu’s (2017, p. 75) ‘strategies for conceptual and theoretical growth’ may be applied to disability rights and service provision to disabled minority communities in the UK. We suggest that this should be done by inverting his ‘three primary strategies’ of transporting ‘Western theories; transformation of these theories; and proposing concepts and theories’, by taking account of the theory of participation and what can be achieved for all (Horner, 2020, p. 415). Liu’s (2017, p. 78) research ‘suggests the need to consider the influence of the cultural tradition’. Our research supports this proposal in the UK context which may make the take-up of those services more relevant to the whole population. This may enable the transformation of those services and thereby the underpinning conceptualization and theorization of social care provision with and for the disabled community. This would include a broader understanding of health and social care needs, the role of the family and community in providing support and conceptions of disability/ability and wellbeing. Post-pandemic it is to be anticipated that the trends which were emerging pre-pandemic will have been exacerbated with ‘many measures of economic, human and environmental inequality’ increasing (Horner, 2020, p. 422). Within the UK we have seen differential impacts of the pandemic on minoritized communities (Bhatia, 2020; Public Health England, 2016; Otu et al., 2020) and in the take-up of health-based interventions, such as vaccination (Razai et al., 2021). Inequality and poverty have increased (Public Health England, 2016) and the full

Participation in personalization of minority cultural groups  449 impact is yet to be understood. The global challenges within and across countries described by Horner (2020, p. 422) as ‘urban issues … precarious work … local and regional development, and socio-spatial inequality’ alongside a ‘host of common challenges facing the third sector (i.e., non-profits/non-governmental organizations) in North and South have also been identified’. And the likelihood is that those from disadvantaged groups, such as those from minority cultural groups in the UK and disabled people will experience further disadvantage. Now, therefore, may well be the time for ‘revolutionary approaches’ (Liu, 2017) to emerge. We asked, does social policy implementation go far enough to support the difficulties diasporic communities experience? Our empirical findings suggest it does not and that in doing so policy in the UK does not fully support the implementation of the Universal Declaration of Human Rights, as it does not enable ‘the dignity and worth of the human person’ through the promotion of ‘social progress and better standards of life in larger freedom’ (Preamble, United Nations, 1948). Working together, using participatory approaches, a sensibility of family and community, utilizing a culturally informed understanding of human rights, and ensuring the provision of culturally informed services within which professionals utilize cultural specificity may make it possible for the UK’s disability provision to transform its own understanding and theories of social care. It may enable a deeper understanding of personalization to emerge that is more holistic and informed by a wider sense of wellbeing which incorporates all people in all communities within the UK.

NOTE 1.

Start of endnote. And as Horner (2020, p. 415) has outlined this holistic sense of wellbeing is incorporated into international UN perspectives with the SDG Index and Dashboards showing similarities and divergences but also huge basic needs challenges for low-income countries – in relation to poverty (SDG 1), hunger (SDG 2), health care (SDG 3), education (SDG 4), water and sanitation (SDG 6), jobs (SDG 8) and infrastructure (SDG 9). End of endnote.

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38. Materializing change: exploring human rights-based approaches to improve built environment accessibility at the neighbourhood scale Mary Ann Jackson, Erin Wilson and Flavia Marcello

INTRODUCTION The Neighbourhood: A Complex Environment Neighbourhood layout and associated built form, content, and detail significantly impact accessibility outcomes. Therefore, the built environment wields substantive influence over people’s lived experiences of disability and their attainment of human rights. The built environment encompasses places, spaces, structures, features, and facilities that have been created and/or modified by humans. Ranging in scale from products to buildings to neighbourhoods and cities, the built environment provides the settings in which people live, work, and play, encompassing public buildings, commercial buildings, and private dwellings. It also includes supporting infrastructure, above and below ground, such as public and private transportation systems, utilities networks, and street furniture. Although the social model of disability, well known in the disability domain, has long recognized the built environment as a disabling instrument in itself (Zola, 1989), a “significant extent of the existing built environment, whether historical or ‘modernist’, has been designed within a paradigm of a charity-medical model of disability” (Jackson, 2018, p. 4). This is engendered by: the low public profile of people with disabilities; conformist societal attitudes; design precedents; ineffective legislation; and poor understanding of the built environment accessibility needs of people with disabilities, particularly by built environment practitioners (Imrie, 1998, 2014; Jackson, 2018; Guffey, 2021). Hence, built environment accessibility policy and practice needs to shift from unconsciously implementing an out-dated charity-medical model of disability (Imrie, 1998; 2014; Guffey, 2021) to consciously embracing a social rights-based model of disability (see, for example, Degener, 2016). A human rights-based lens adds an instructive perspective to how built environment accessibility improvement might be effected. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD; United Nations, 2006) shifts viewing people with disabilities as recipients of charity, medical treatment, special services, and social protection, towards recognizing people with disabilities as rights-holders and active members of society on an equal basis with other people. Several UNCRPD articles are salient to the design and delivery of the built environment (such as Articles 9, 19, 27, and 30). While basic democratic principles such as the right to participation and inclusion are not alien to (anglosphere) built environment practitioners, architectural education and practice still pay scant attention to ‘human rights’ (Bristol, 2018), especially the right of people with disabilities to an accessible built environ452

Materializing change  453 ment, at both building and neighbourhood scale. In this context, it is not surprising that more than a decade after the adoption of the UNCRPD, existing neighbourhoods still fail to meet the accessibility needs of people with disabilities (Jackson, 2018). Introducing an Applied Method for Materializing Change: The Universal Mobility Index Process Responding to built environment barriers constraining people with disabilities’ empowerment, agency, and autonomy, Green (2011) developed the Universal Mobility Index (UMI) tool to measure the accessibility of the built environment at neighbourhood level. The UMI tool is founded on the social model of disability and designed to function as a human rights indicator (Green, 2011). Innovatively, the UMI tool combines people with disabilities’ on-site assessment of a selected neighbourhood (the Built Environment Component) with an assessment of the relevant policy environment (the Policy Environment Component), generating both a neighbourhood accessibility score and prioritized problem areas. The UMI tool has been trialled in Kensington, an inner Melbourne neighbourhood (Jackson, 2019b). Initially, the UMI’s design anticipated that its most immediate benefit would be as an advocacy resource for people with disabilities lobbying government for improved built environment accessibility. The tool’s original design did not directly address the abyss between the built environment and disability domains, nor overtly contemplate the complex adaptive sub/systems of the neighbourhood, nor its potential role as an (albeit small) ‘intervention’ involving built environment practitioners with agency for generating change. More recently, an enhanced version of the UMI has been developed to address these issues: the UMI Process. The UMI Process recasts the UMI tool with a focus on the process of engaging both rights-holders (people with disabilities) and duty-bearers (built environment practitioners) in analysis of the impacts of built environment design decision-making. The UMI Process, integrating inclusive practice and design justice principles, is proposed in this chapter as an applied model of human rights-based built environment accessibility praxis (discussed later in the chapter). In this chapter, we contend that continued inaccessibility in the built environment is the result of many interrelated, intersecting, and dynamic factors occurring at varying scales across time. First, lessons can be drawn from the human development domain to nurture a ‘disability human rights-based approach’ (UNDP, 2012; UNFPA, 2014) to improving built environment accessibility at neighbourhood scale; making new connections between disability policy and built environment practice. Second, this is enhanced by contextualizing built environment delivery within a complex adaptive sub/systems (CAS/Ss) framing (Portugali et al., 2012) that helps articulate the ways in which neighbourhood is constituted, highlighting areas and actors of change. Finally, in this chapter, we explore what a ‘disability human rights-based approach’ to improving built environment accessibility at neighbourhood scale might encompass. As an applied example of this, we offer insight into how to foster change through consideration of the UMI Process. An acknowledged limitation of this writing is that the UMI Process, albeit pre-implementation designed, is yet to be field-tested.

454  Research handbook on disability policy

CONNECTING THE DISCONNECTED: DISABILITY POLICY AND BUILT ENVIRONMENT PRACTICE The roots of the disconnect between built environment creation and disability policy originate in the late 1800s with the post-industrial birth of the modern metropolis. Both then and now, particularly in the anglosphere, the spatial form of cities and their neighbourhoods, the programmatic content of infrastructure and buildings, the detail of surfaces, fixtures, fittings, and finishes of the built environment are under the remit of what we can call ‘built environment practitioners’ (Habraken, 1987, 2000; Bristol, 2018). This term is “intentionally broader than conventional disciplinary descriptors of architecture/architect, planning/planner, and the like, and signif[ies] all those involved in legislating, shaping, funding, forming, making, and researching the built environment” (Jackson, 2018, p. 2). It is in this sense that built environment practitioners control the built environment – in contrast to the lack of power/agency any particular person with disabilities has over built environment delivery. Built environment form, content, and detail are significant determinants of built environment accessibility outcomes. Hence, the continuing inaccessibility of the neighbourhood built environment can be explained, partly, by built environment practitioners’ lack of understanding of disability issues, policy, legislation, and people with disabilities’ rights. This lack of understanding is perpetuated by built environment practitioners’ lack of interaction with people with disabilities and lack of understanding of the effect of existing conditions (Imrie, 1998, 2014; Boys, 2014; Terashima & Clark, 2021; Guffey, 2021). Historical Spatial Separation Parallel to this – and crucially disconnected from it – disability-specific policy emerged out of welfare concepts. Stemming from charitable acts of religious and community bodies, the charity model of disability signifies an approach to disability characterized by caretaking and protection, both in terms of the vulnerable ‘other’ needing protection and care and, later, the need to protect the economic and social order by segregating ‘deviant’ members of society (Wolfensberger, 1969; Imrie, 2014; Guffey, 2021). From around the mid-late 1800s through to the early 1900s, in Australia, the UK, the USA, and elsewhere, the construction of institutions and workhouses for people with disabilities became the (spatial, i.e., built form) ‘solution’. Kirkbride’s ‘moral management’ championed separating ‘the patient’ from home into formulaic and remote institutional settings under the Kirkbride Plan (Yanni, 2003). This historical ‘welfare’ policy framing emphasized the dependence and passivity of people with disabilities, and the legacy of that history is still apparent (Imrie, 2014; Guffey, 2021). Imrie (1998) observed that “western cities are characterized by a design apartheid where building form and design are inscribed with the values of an ‘able-bodied’ society” (p. 129) – a somewhat inevitable consequence of both the charity model’s segregation of people with disabilities and Ebenezer Howard’s Garden City ideals. Howard, one of the most influential theorists of anglosphere urban development, placed institutional ‘Convalescent Homes’, ‘Asylums for Blind and Deaf’, and ‘Farms for Epileptics’ amongst ‘Fruit Farms’ and ‘Cow Pastures’, isolated from city life (Howard, [1898] 2007). Institutionalization in most western countries reached its peak in the late 1960s under the medical model of disability. In Melbourne, Australia, the full closure of ‘Kew Asylum/Kew Cottages’ only occurred in 2008. Imrie (2014) has further argued that:

Materializing change  455 the fortunes of disabled people have to be understood as indissoluble from the intersections between space, place and policy. Such intersections, in the context of a post-welfare world, are shaped, in part, by the human worthiness of disabled people being, increasingly, discredited in a context whereby welfare policy reform is placing the onus on self-active and self-starting individuals as the basis of a good society. (p. 14)

A crucial, spatial consequence of the historically pervasive ideology of institutionalization and the tenets of the emerging post-welfare world is that much of the contemporary existing built environment remains inaccessible (Jackson, 2018; Imrie, 2014). Of great concern, particularly in Australia, is that shortcomings with the existing public realm, the neighbourhood, and the built environment do not automatically trigger rectification under extant built environment accessibility legislative requirements pertaining to new buildings (Jackson, 2018). And, under the current (slow) rates of change, 75–90 per cent of the existing built environment will still be the same in 20–25 years time (Pinnegar et al., 2008; DEFRA, 2012). Compliance Mindset Australia’s Disability Strategy 2021–2031 lists ‘Inclusive homes and communities’ as the second of seven Outcome Areas. Similarly the first of the four key pillars noted in the Inclusive Victoria state disability plan (2022–2026) is ‘Inclusive communities’. However, in our experience in Australia, such disability policy instruments, and including Local Government Disability Action Plans, are rarely recognized within the built environment domain, let alone embraced. Additionally, it appears that Australian disability legislation, such as the Disability Discrimination Act 1992 and associated Disability Standards (Public Transport, Education, and Premises), is yet to translate into widespread, positive change to people with disabilities’ daily interactions with the built environment. This is because human rights legislation has unintentionally translated to a compliance mindset where ‘the answer’ is found in regulatory codes.1 These codes rarely directly address layout, form, content, or detail at neighbourhood scale, particularly that of the public realm’s pedestrian environment. A narrow, compliance mindset has the additional drawback of perpetuating the status quo of built environment practitioners not engaging with people with disabilities. Rather, in day-to-day practice, built environment practitioners reference technical legislation, i.e., building regulations, and are largely unaware of the diversity of disability, people with disabilities as rights-holders, and the significance of their own duty-bearer status (as controllers of the built environment). As a result, the issue of ‘accessibility rights’, as distinct from ‘regulatory compliance’, is little explored by built environment practitioners. This means that in the third decade of the 21st century, the existing built environment, in Australia and elsewhere, still fails to meet the accessibility needs of people with disabilities (Jackson, 2018; Guffey, 2021). This is despite: (1) people with disabilities agitating for built environment accessibility improvement since World War II; (2) international and in-country anti-discrimination and/or built environment accessibility policy and legislation being in place; and (3) much contemporary attention on improving built environment sustainability performance, via measurement (Quinn et al., 2002; UN-Habitat, 2017; Jackson, 2019b; Pineda, 2020; Liddiard et al., 2021).

456  Research handbook on disability policy Rights-Holders and Duty-Bearers Most readers will be familiar with the concept of rights. However, the built environment domain is less likely to be cognizant of the application of rights, particularly in practice. An essential concept to grasp at the outset is that of rights-holders and duty-bearers (UNHCR, 2008; Worm, 2012; Layton & Wilson, 2014). Although all people are rights-holders who can make legitimate claims in various contexts, human rights discussions generally revolve around members of marginalized/vulnerable/disadvantaged groups. But rights-holders are not to be viewed as beneficiaries of aid or recipients of charity. Every rights-holder is entitled to rights, to claim rights, and to hold duty-bearers accountable. Rights-holders also have a responsibility to respect the rights of others. Claims by rights-holders are not a new set of demands, but are rightfully claimed (UNHCR, 2008). Nonetheless, rights-holders need ‘capacity’ to access their rights; to access information, organize, advocate for policy change, and obtain redress. The UNCRPD, in empowering people with disabilities as rights-holders and active, equal members of society, provides a solid foundation for (inter)action. Beyond the social model of disability, the human rights model of disability, particularly through the application of the UNCRPD, potentially provides a better framework for addressing built environment practitioners’ poor understanding of including people with disabilities as rights-holders in built environment decision-making processes. The human rights model of disability did not spontaneously appear, but rather evolved within a continuum of rights-based approach thinking (Quinn et al., 2002; Degener, 2016). Human rights-based approaches (HRBAs) are concerned with operationalizing human rights principles to achieve the desired outcome of human rights in practice. Therefore they (HRBAs) are not so much about implementing ‘the law’, but rather are about mindsets. We posit that a new built environment accessibility praxis mindset is required – one that engenders meaningful relationships between people with disabilities as rights-holders and built environment practitioners as duty-bearers. For every human right there is a corresponding duty-bearer, or more usually multiple duty-bearers, i.e., those with the responsibility to respect, protect, promote, and fulfil rights (UNHCR, 2008; UNDP, 2012; Tasioulas, 2017). Although, historically, nation states and their direct agents are the most obvious category of duty-bearer, all actors “that hold or exercise considerable or decisive and asymmetrical power which has, or has the potential to have, a considerable impact on a number of persons or situations” are duty-bearers (Vandenhole et al., 2014, p. 1035). This is particularly important in westernized nation states where over the past few decades built environment provision has operated in a largely privatized delivery, maintenance, and renewal context via outsourcing and contracting mechanisms consistent with neo-liberal ‘small government’ and ‘new public management’ ideologies (Pawson et al., 2016). Therefore, most built environment practitioners are not located in the public sector, but rather in sole/small practices in the private sector (AACA, 2018; Wainwright, 2019). Nevertheless, under human rights instruments, they retain their obligation as duty-bearers. To fulfil their obligations to satisfy rights-holders’ claims, duty-bearers have need of resources and authority to function, and data to plan and monitor the realization of rights. Duty-bearers’ responsibilities are not, however, extinguished by a lack of (material) resources. While duty-bearers are directly obligated to act within their spheres of control they also have an advocacy responsibility within their spheres of influence. As argued by the UNDP, “[f]or an effective application of human rights […] professionals from a variety of disciplines need

Materializing change  457 to work together, understand each other’s terminologies and draw on each other’s perspectives and experiences” (UNDP, 2012, p. 4). Furthermore, the UNDP (2012) states that it is “important to ensure a collaborative and constructive environment and to agree on substantive questions that everybody can relate to” (p. 4). Engaging built environment practitioners to recognize both themselves as duty-bearers and people with disabilities as rights-holders is a vital step towards fostering built environment change. Notwithstanding the various difficulties highlighted in the preceding paragraphs we posit that built environment practitioners, as experts in control of built environment form, content, and detail, are duty-bearers and people with disabilities are rights-holders to accessibility of the built environment. In this vein, the concept of rights-holders and duty-bearers introduces an important element of accountability and moves the focus of achieving built environment accessibility to where it should be – with people with disabilities, not for people with disabilities, the notion of with being an essential feature of human rights-based approaches. However, where duty-bearers are ‘distant’ from rights-holders, and/or the discourse is distant from the grassroots, successful implementation of human rights-based approaches is difficult, particularly as much human rights-based approaches discussion tends to be theoretical (Noh, 2015) – this is particularly evident in the built environment domain. Complex Adaptive Sub/Systems (CAS/Ss) Addressing the shortcomings noted above, contextualizing built environment delivery within a complex adaptive sub/systems frame can forge new connections between disability policy and built environment practice. Contemporary Complexity Theory advocates that a (complex, adaptive) system (of multi-agents) will form a whole, distinct from its constituents and, concurrently, both the whole and its constituents will interact with external factors. Modern cities with their acknowledged socio-ecological challenges and inherent people-built environment interactions are, self-evidently, complex adaptive systems intricately composed of diverse actors, diverse subsystems, and components of subsystems (Portugali et al., 2012; Totry-Fakhoury & Alfasi, 2016). Totry-Fakhoury and Alfasi (2016) state that “[t]he order of the built environment, similarly to other complex systems, emerges from the multifaceted interactions between the numerous inhabitants, landowners, community leaders and other stakeholders that share it and act in it” (p. 28). Although Complexity Theory ascribes system-changing agency both to inanimate objects (the built environment) and (societal) structures and ideologies like legislation, property ownership, and capitalism; the built environment itself does not self-propagate. The actions of individual actors within CAS/Ss are interconnected such that “one agent’s actions change the context for other agents” (Plsek & Greenhalgh, 2001, p. 625). To date, though, neither Complexity Theory nor Cities as Complex Adaptive Systems literature has paid much attention to the interaction between built environment practitioners and people with disabilities. Therefore, a further vital step is to directly connect people with disabilities and built environment practitioners, i.e., induce previously disconnected constituents to form a (new) whole bonded by interacting relationships. However, rights-holding and duty-bearing are neither static nor happening in a vacuum, but rather recursively occur within constantly self-organizing multiple CAS/Ss. The Physical Neighbourhood, a sub/system comprised of Infrastructure, Public Buildings, Commercial Buildings, and Private Dwellings, is the most obviously visible manifestation of ‘neighbourhood’ and is the physical space within which accessibility plays out. However, multiple hidden

458  Research handbook on disability policy sub/systems of any neighbourhood exist, two of which are, for example, that of freehold land ownership and infrastructure asset management (predominantly transportation routes). Other hidden sub/systems are those of local authority planning scheme zoning, and built environment accessibility legislation; in Australia the latter does not follow a linear trajectory through the hierarchy of international, national, state, and local government levels. These hidden sub/ systems interact with numerous other sub/systems one of which encompasses frequently silo-ed ‘Private’, ‘Public’, ‘Academia’, and Non Government Organization/Not For Profit ‘Sectors’. Together, though, these sectors form ‘community’, another sub/system, but one which is visible, comprising ‘people’, including people with disabilities. These multiple sub/ systems could be diagrammed as an ‘exploded axonometric’ comprising, say, six ‘layers’ arranged vertically. Radiating out from the vertical axis, concentric ellipses, in dashed lines of different weights and with arrows in different directions, demonstrate how these sub/ systems are constantly affecting each other. In this way, there are multiple interactions within and across sub/systems, for example, within a people with disabilities–neighbourhood built environment interaction CAS/S, and a people–people interaction CAS/S. Understanding neighbourhood as constituted in this way articulates the context or ‘locations’ of practice in which human rights-based approaches need to be operationalized in order to effect change in the neighbourhood built environment.

BEYOND CONNECTING: APPROACHING ACTION Recursively turning to the title of the chapter, what do rights-holding, participation, duty-bearing, and accountability, all critical components of HRBAs, look like in theory and practice, i.e., praxis? Rights-based approaches fundamentally recalibrate the historical end-game of (charitable) aid-agency provision of vital needs, such as shelter, to the processes and outcomes of claiming and protecting individual (and ‘marginalized’ groups) rights, to the enactment of legislation and policy frameworks (Miller & Redhead, 2019). Implemented within the development arena, rights-based “approaches were to be ‘participatory’, built on the active involvement and ‘advocacy’ of ‘poor’ and ‘excluded’ peoples […] whilst also recognizing the critical role of states as ‘duty-bearers’” (Miller & Redhead, 2019, p. 700). Essential human rights principles informing such processes are based on standards normatively defined by international law. These standards are directed by internationally agreed human rights properties and translate into key principles and/or elements of HRBAs including: equality, non-discrimination, participation, inclusion, accountability, rule of law, transparency, human dignity, empowerment and, integrally, the concept of rights-holders and duty-bearers, the latter not restricted to government (UNDP, 2012; UNFPA, 2014; Miller & Redhead, 2019). Miller and Redhead (2019) have observed that from around the late 2000s, the ‘rights-based’ label has been “used and practiced in a whole host of different ways by numerous different actors, and thus the broad umbrella concept of rights-based approaches [continues] to expand” (p. 702). Indeed, within the spatial disciplines arena, the concept of ‘rights’ is a topic of interest amongst a small number of urban theorists (Soja, 2010; Hearne, 2013). In the context of geography-disadvantage, Soja (2010) discusses seeking spatial justice. Within a regeneration-disadvantage context, there is continuing work in the ‘right to the city’ vein originally articulated by Lefebvre and continued, for example, by Harvey and UN-Habitat (Hearne, 2013). Bristol (2018), an architect and human rights lawyer, has explored the inter-

Materializing change  459 sections between architecture, rights, and development for several decades, and continues to advocate that architectural education must encompass rights concepts. The Institute for Human Rights and Business (IHRB) endeavours to provide a “platform for a collaborative programme to advance human rights and dignity throughout the built environment lifecycle” (IHRB, 2019, p. 2). This indicates that an expansion of rights-based approaches into built environment accessibility praxis is possible. Specifically, at the disability and built environment intersection, leading contemporary urban/disability scholar-activist, Victor Santiago Pineda (2020), has written extensively of the (accessibility and inclusion) shortcomings of the urban environment including the ways in which conventional design and delivery contributes to spatial and social injustice. Built environment accessibility is a precondition to inclusion, or in other words, inaccessible built environments – by their very definition – exclude (Pineda et al., 2017). Pineda has also been instrumental in setting up the Global Compact on Inclusive and Accessible Cities (https://​ cities4all​.org/​campaign/​) aligning key commitments to accessibility, universal design, and inclusion within the Sustainable Development Goals (SDGs), New Urban Agenda, UNCRPD, and the WHO’s Age Friendly Cities Framework. The Compact affirms the rights of people with disabilities and older people, half of whom currently live in towns and cities, to equitable participation in society. Rob Imrie, geographer, sociologist, and urbanist, has written extensively about the geographies of disability and the built environment, the impact and implications of urban governance, policy, and design, and the codification and regulation of architecture. A consistent, underlying theme in Imrie’s work is the lack of accountability and unacknowledged power of the built environment domain, at the profession level. The work of Jos Boys, architect, educator, and activist (Boys, 2014, 2017), offers guidance in bringing the built environment and disability domains together through interrogation of the interconnections between disability, architecture, and cities. Boys (2017) asks: why is disability not critically examined, like gender, sexuality or race in architecture? Why has disability somehow remained consistently stuck in a non-historical and atheoretical relationship to building design theories and practices? (p. 270)

Boys’ work is not, however, specifically associated with rights-based approaches. The work of Aime Hamraie, writer, scholar, teacher, and critical maker, focuses on the relationships between bodies and built environments, applying critical disability studies and crip theory to designed environments. Hamraie (2018) has identified that activism and critique around “rights-based approaches to accessibility, pursued through antidiscrimination law, have failed to provide meaningful inclusion for disabled people” (p. 459). Although interest in ‘disability human rights-based approaches’ and ‘rights’ within the general built environment domain remains scant, the work discussed above provides some footings on which to build a ‘disability human rights-based approach’ to improving built environment accessibility at neighbourhood scale. Widening accountability to non-state duty-bearers is essential. Based on UNCRPD Article 9 (Accessibility), built environment practitioners, whether located in either the public or the private sector, are responsible and accountable for: ● enabling people with disabilities to live independently and participate fully in all aspects of life (by way of appropriate built environment and transportation),

460  Research handbook on disability policy ● ensuring that people with disabilities can access, on an equal basis with others, information and communications about the physical environment and transportation, ● identifying and eliminating obstacles and barriers to accessibility to buildings, roads, transportation, and other indoor and outdoor facilities, including schools, housing, medical facilities, and workplaces, ● developing, promulgating, and monitoring the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public (i.e., all people with and without disabilities), ● ensuring that private entities offering facilities and services take all aspects of accessibility into account, and ● understanding accessibility issues facing people with disabilities and communicating same to unaware stakeholders, e.g., clients procuring built environment design and delivery services through, for example, training. Although Australia has ratified the UNCRPD and its optional protocol, Australian disability discrimination and accessible built environment legislation does not reference the UNCRPD leaving it with no explicit standing in Australia’s built environment legislative system. Nevertheless, the Committee on the Rights of Persons with Disabilities makes it clear that rights-based approaches to improve both built environment accessibility legislative frameworks and built environment accessibility outcomes are essential (Comm CRPD, 2016). However, action is not dependent on a legislative frame. Emergent rights-based approaches in Ireland have engendered various built environment accessibility improvement initiatives (O’Herlihy & Winters, n.d.) and Bringolf (2010) characterizes designing in visitability as a “rights-based approach to providing equitable access at a family and neighbourhood level” (p. 3). If ‘rights-based approaches’ are a generalizable concept that can be adaptively employed to bring about change in particular applications, then they can be considered a form of ‘change theory’. As revealed by various UNDP and other publications, human rights-based approaches have similar processes to human development’s theory of change processes because they can detect impact pathways, spheres of control, and influence and identify stakeholders (UNDP, 2005). Various types of analyses are critical to the enactment of rights-based approaches: The causal analysis aims to achieve consensus on the causes of the problems, the obligation analysis establishes the responsibility of the duty-bearer, whilst the capacity analysis identifies why duty-bearers do not seem to be able to perform their duties properly, and why claim-holders are not able to claim their rights. (UNDP, 2005, p. 22)

Micro events instigated by individual actors can often be more transformative than grand, but poorly implemented, overarching legislation (Webb, 2005). In CAS/Ss, both rights-holders and duty-bearers are actors with agency. It is one thing to understand the concept of rights-holders and duty-bearers and to also understand that actors within sub/systems have agency in that both being and action have ‘effect’. However, to materialize (i.e., to ‘make real’) change, both ‘process’ and ‘outcome’ are necessary concerns (Miller & Redhead, 2019).

Materializing change  461

PROCESS TO OUTCOME: PRACTISING DISABILITY HUMAN RIGHTS-BASED APPROACHES Transdisciplinarity Acknowledging people with disabilities as rights-holders and reframing built environment practitioners as duty-bearers, both operating as actors within multiple complex (multi-agent) adaptive sub/systems, opens up new ways to explore novel approaches to reforming built environment accessibility praxis. Multi-agent systems are inherently transdisciplinary so improving existing built environment accessibility at neighbourhood scale requires many diverse actors working participatorily, inter-disciplinarily, and cross-sectorially, i.e., transdisciplinarily. Both transdisciplinarians (being stakeholders/actors) and transdisciplinarity itself have agency within complex systems thereby impacting dynamics, feedback loops, and adaptive capability. That is to say, not just the actors themselves within the system but the praxis of transdisciplinarity (which affects relationships between actors) are all agents capable of impacting the system (and inherent subsystems) in differing ways. The transdisciplinarity lens questions the idea of the ‘neutral’ actor; all actors have agency that affects CAS/Ss’ flux. Transdisciplinarity is, therefore, a potential positive agent for change within complex adaptive sub/systems. Human interaction processes, such as the participation and collaboration of multiple actors, multiple disciplines, and multiple sectors, are bedrock characteristics of transdisciplinarity practice (Cundill et al., 2015). Transdisciplinarity, as applied inquiry-driven thinking, assists greatly in the consideration of disparate, people–people interaction (Montuori, 2013; Cundill et al., 2015). Therefore, transdisciplinarity has potential utility in the process of improving neighbourhood built environment accessibility because, as previously noted, all built environment is, in fact, people-instigated. Contextualizing built environment delivery within a complex adaptive sub/systems frame that inherently recognizes transdisciplinarity offers a mechanism for creating a tangible relationship, and thereby meaningful interaction, between experts (duty-bearing built environment practitioners) and expert-users (rights-holding people with disabilities). Effective partnerships, with all actors working together transdisciplinarily, are even more important when retro-fitting existing communities, the latter being the most prevalent population setting (Carmichael, 2017). Recognition of a “wider crisis in the discourse of human rights accountability” coincided with heightened interest in transdisciplinarity (Baxi, 2000 cited in Thompson Klein, 2015, p. 14). Innovatively, compared to past conventions of knowledge production, transdisciplinarity is a new mode of “inquiry, practice, and learning, [of] hybridization of knowledge” and one which, democratically, embraces the knowledge of lay-people (Thompson Klein, 2011, p. vi). Popa et al. (2015) note that the sustainability arena, where contemporary built environment praxis is well-aligned, requires “methodological and institutional arrangements which do not restrict the plurality of value expressions and […] direct involvement rather than expert-driven consultation” (p. 53). Popa et al. (2015) also state that: solving sustainability problems involves decisions on values that require civic participation and the building of social legitimacy for proposed transition pathways to sustainable societies. Therefore, both scientists and policy makers have called for re-conceptualizing the role of experts, practitioners and citizens in the production and use of scientific knowledge. (p. 45)

462  Research handbook on disability policy A New Built Environment Accessibility Praxis As Jackson (2019a) has previously put forward, improving neighbourhood built environment accessibility requires a new built environment accessibility praxis – one that embraces the social model of disability, Complexity Theory, transdisciplinarity, and human rights-based approaches. Such a praxis necessarily involves a plurality of experts, built environment practitioners, and ‘expert-users’, people with disabilities. The notion of both experts and ‘expert-users’ being integral to moving forward fits with the UN’s Statement of Common Understanding (UNSDG, 2003, 2019) requiring HRBAs to develop the capacity of both duty-bearers (to meet obligations) and rights-holders (to claim rights). We acknowledge that there is no agreed template for HRBAs and that understanding and operationalization continues to both vary widely and evolve (Miller & Redhead, 2019; Miller, 2019; Vandenhole & Gready, 2014; UNSDG, 2003, 2019). Nonetheless, idealistically applying the UN’s HRBA intentions (UNSDG, 2003) to the complex adaptive sub/system(s) of (privatized) delivery of built environment accessibility (in the Australian) context would encompass the following: 1. Built environment accessibility improvement, including all associated policy, research, and technical input, delivered through any sector (public, private, academic, not-for-profit), or combination thereof, should fulfil the rights of people with disabilities as laid out in the UNCRPD. 2. Across all sectors and throughout all phases of procurement, design, and delivery, all projects, whether policy, research, or construction, should develop the capacities of duty-bearers (built environment practitioners) to meet obligations and of rights-holders (people with disabilities) to claim rights. 3. Human rights standards and principles derived from the UNCRPD should guide all projects across all sectors throughout all phases of procurement, design, and delivery. Embracing the twinned concept of duty-bearing and rights-holding inherent in human rights-based approaches necessarily involves moving built environment practitioner mindsets from being (private sector) ‘technical’ services providers, who simply provide built environment design, documentation, and coordination services (when and how commissioned), to becoming providers whose breadth of professional activities is underpinned by UNCRPD (disability) human rights principles. Such transformation is unlikely to be either swift or without difficulty (Vandenhole & Gready, 2014). The UMI Process as a Human Rights-Based Approach In light of the above, Jackson, as the designer-researcher, proposes an adaption of the original UMI tool to meet the characteristics listed. The UMI Process can be characterized as being consistent with a (disability) human rights-based approach to improving neighbourhood built environment accessibility. Employing the UMI Process to investigate neighbourhood built environment accessibility necessarily requires people with disabilities (expert-users) and built environment practitioners (experts) meaningfully working together, thereby building capacity of built environment practitioners to meet obligations and people with disabilities to claim rights. However, although the UMI Process may align with a (disability) human rights-based approach, the UMI Process design is not ‘blinkered’ within such a framing. Acknowledging that neighbourhood built environment accessibility delivery occurs within a broader and more

Materializing change  463 complex context of adaptive people–people sub/system(s) facilitates the integration of transdisciplinarity. The latter requires built environment practitioners working with people with disabilities, whereby previously distant, legalistic, rights language is tempered by the consequent creation of personalized relationships. Therefore transdisciplinarity, involving both elevating people with disabilities’ standing (in built environment praxis) and exposing built environment practitioners to the lived reality of people with disabilities’ built environment access, becomes the foundation on which to educate built environment practitioners about (disability) human rights. This situates the UMI Process somewhere between a rights-framed and a rights-referenced approach (Miller, 2019) to neighbourhood built environment accessibility improvement.

Figure 38.1

UMI process (simplified)

464  Research handbook on disability policy Succinctly, the UMI Process (Figure 38.1) moves through five phases: 1. Project Initiation – includes assembling representatives of local government and disability organizations,2 people with disabilities, and built environment practitioners. 2. Mapping – built environment practitioners (i.e., the duty-bearers) are the mapper-analysts who map the selected neighbourhood using GIS techniques to identify assessment locations within the neighbourhood. 3. Assessment – the mapper-analysts (a) facilitate and accompany the teams of people with disabilities (i.e., rights-holders), who adopt the role of site assessors of the neighbourhood, and (b) facilitate Policy Environment questionnaire distribution to disability organizations and local government representatives whose remit includes the neighbourhood. 4. Analyses – of both Built Environment and Policy Environment components are undertaken by the mapper-analysts using the UMI tool scoring process. 5. Reporting – requires the collaboration of all groups and post-implementation transdisciplinary discussion. Unlike conventional compliance-driven, expert access auditing, the UMI Process requires teams of people with disabilities to assess the accessibility of the selected neighbourhood in direct engagement with built environment practitioners throughout all phases. This process leverages CAS/Ss’ ability to create linkages, promotes transdisciplinarity, and becomes a mechanism for activating change. Following on from the above, the (new) UMI Process is provisionally proposed as an enhanced solution, part of the process, towards achieving the desired (design) outcome of an accessible built environment at neighbourhood scale. The immediate output of this ‘small intervention’, a measurement of existing neighbourhood built environment accessibility, does not in itself, however, improve neighbourhood built environment accessibility. Future success, i.e., arriving at the outcome of an accessible built environment at neighbourhood scale, is predicated on theory of change thinking (Schneider et al., 2019). To this end, a summarized version of the UMI-driven theory of change for neighbourhood built environment accessibility improvement is presented in Box 38.1.

BOX 38.1 UMI-DRIVEN THEORY OF CHANGE (SUMMARIZED) Neighbourhoods comprise many complex adaptive sub/systems encompassing both people and the environment. The existing conditions of the neighbourhood built environment impede people with disabilities, rights-holders, accessing local neighbourhoods. This is due, in part, to embedded built environment accessibility praxis, whereby the lack of interaction between built environment practitioners and people with disabilities leads to limited understanding of the inaccessibility of the existing neighbourhood environment, people with disabilities’ rights-holder status, and duty-bearer accountability. The UMI Process is a transdisciplinary way of assessing neighbourhood-scale built environment accessibility informed by the social model of disability and human rights-based approaches, which brings together people with disabilities, built environment practitioners, researchers, and representatives of local government and disability organizations. Through implementation and dissemination of this intervention, built environment practitioners will begin to understand the lived experience of people with disabilities, the ex-

Materializing change  465 isting condition of neighbourhood built environment inaccessibility, and the accountability embedded in their duty-bearer status. Widening interaction, creating feedback loops leading to capacity and behaviour change, will exponentially increase spheres of control and influence. Consequently, a ‘new built environment accessibility praxis’, embracing the social model of disability, Complexity Theory, transdisciplinarity, and human rights-based approaches, can be evolved whereby people with disabilities are empowered through a fully accessible built environment facilitating social, environmental, and economic inclusion; where the vagaries of complex adaptive sub/systems are unnoticeable to the neighbourhood user with disabilities going about daily life.

CONCLUSION Bringing (disability) human rights-based approaches directly to accessible built environments delivery is a complex, demanding, and potentially fraught process. In the era of privatization, widening accountability to built environment practitioners as non-state duty-bearers is essential but is hindered by: the current disconnect between the built environment and disability domains; built environment practitioners’ compliance mindset; and built environment practitioners’ lack of understanding of (human rights) duty to fulfil people with disabilities’ claims to rights. The current status quo simultaneously results in built environment practitioners not exercising agency for positive change and people with disabilities unable to exercise agency. Transdisciplinarity can break this vicious cycle by recognizing the complex (multi-agent) adaptive sub/systems nature of modern built environment delivery and allowing new connections to be made through people–people interaction, specifically built environment practitioners and people with disabilities. In summary, the chapter has presented a five-stage process for materializing improvement to built environment accessibility at neighbourhood scale. 1. Understanding disconnects between: a. built environment practice and disability policy environment, and b. existing built environment praxis and realization of (disability) human rights. 2. Reframing modern built environment (accessibility) delivery as a people-instigated, complex (multi-agent) adaptive sub/system(s). 3. Identifying actors within CAS/Ss as rights-holders (people with disabilities) and duty-bearers (built environment practitioners) in alignment with HRBA principles. 4. Applying the UMI Process, an enhanced method of assessing accessibility at neighbourhood scale. 5. Locating the UMI Process within a (UMI-driven) theory of change working towards the ultimate goal of empowered people with disabilities. Through design thinking, professional experience, and reference to relevant legislation, policy, research, grey literature, and media commentary, this chapter has explored the conundrum of bringing disability human rights-based approaches to built environment accessibility praxis. In conclusion we believe that there is no direct, simple answer to improving neighbourhood built environment accessibility. Most certainly, it cannot be solved by either ‘disability policy’ or

466  Research handbook on disability policy ‘built environment praxis’ alone. Nonetheless, embracing both complex (multi-agent) adaptive sub/systems and theory of change thinking and thereby enabling change to be addressed via human rights-based approaches within the framework of transdisciplinarity offers an effective strategy to achieve neighbourhood built environment accessibility.

NOTES 1. 2.

Start of endnote. For example, the US ADA Standards for Accessible Design and, in Australia, the Disability (Access to Premises – Building) Standards 2010 (Premises Standards) and Part D3 Access for people with a disability in the Building Code of Australia (BCA). End of endnote. Start of endnote. Disability Organizations used here includes Disabled Persons Organizations. End of endnote.

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468  Research handbook on disability policy Schneider, F., Giger, M., Harari, N., Moser, S., Oberlack, C., Providoli, I., Schmid, L., Tribaldos, T., & Zimmermann, A. (2019). Transdisciplinary co-production of knowledge and sustainability transformations: Three generic mechanisms of impact generation. Environmental Science and Policy, 102(August), 26–35. https://doi.org/10.1016/j.envsci.2019.08.017 ​ ​ ​ ​ ​​ ​ ​ ​ Soja, E. W. (2010). Seeking Spatial Justice (Vol. 12). University of Minnesota Press. https://onlinelibrary .wiley.com/doi/abs/10.1111/cico.12008 ​ ​ ​ ​ ​ ​ ​ Tasioulas, J. (2017). Protecting human rights: On the role of duties and duty bearers. ABC: Religion & Ethics. https://www.abc.net.au/religion/protecting-human-rights-on-the-role-of-duties-and-duty ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -bearers/10095668 ​ Terashima, M., & Clark, K. (2021). The precarious absence of disability perspectives in planning research. Urban Planning, 6(1), 120–132. https://doi.org/10.17645/up.v6i1.3612 ​ ​ ​ ​ ​ ​ ​ Thompson Klein, J. (2011). Foreword. In I. Doucet & N. Janssens (Eds.), Transdisciplinary Knowledge Production in Architecture and Urbanism—Towards Hybrid Modes of Inquiry (p. vi). Springer (Vol. 11). https://doi.org/10.1007/978-90-481-8870-3 ​ ​ ​ ​ ​ ​ ​ ​ ​ Thompson Klein, J. (2015). Reprint of ‘Discourses of transdisciplinarity: Looking back to the future’. Futures, 65, 10–16. https://doi.org/10.1016/j.futures.2015.01.003 ​ ​ ​ ​ ​​ ​ ​ ​ Totry-Fakhoury, M., & Alfasi, N. (2016). From abstract principles to specific urban order: Applying complexity theory for analyzing Arab-Palestinian towns in Israel. Cities, 62, 28–40. https://doi.org/10 ​ ​ ​ ​ .1016/j.cities.2016.12.001 ​​ ​ ​ ​ UNDP. (2005). Human Rights in UNDP. April, 1–29. UNDP. (2012). Mainstreaming Human Rights in Development Policies and Programming: UNDP Experiences. United Nations Development Programme. UNFPA. (2014). The Human Rights-Based Approach. https://www.unfpa.org/human-rights-based ​ ​ ​ ​ ​ ​ ​ -approach UN-Habitat. (2017). Building Sustainability Assessment and Benchmarking: An Introduction. UN-Habitat. UNHCR. (2008). A Community-based Approach in UNHCR Operations. https://www.unhcr.org/en-au/ ​ ​ ​ ​ ​ ​ publications/legal/47ed0e212/community-based-approach-unhcr-operations.html ​ ​ ​ ​ ​ ​ ​ ​ United Nations. (2006). Convention on the Rights of Persons with Disabilities (UNCRPD) – Articles. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ UNSDG. (2003). The Human Rights-Based Approach to Development Cooperation Towards a Common Understanding Among UN Agencies. https://unsdg.un.org/resources/human-rights-based-approach ​ ​ ​ ​ ​ ​ ​ ​ ​ -development-cooperation-towards-common-understanding-among-un ​ ​ ​ ​ ​ ​ UNSDG. (2019). UN Sustainable Development Cooperation Framework. United Nations. Vandenhole, W., & Gready, P. (2014). Failures and successes of human rights-based approaches to development: Towards a change perspective. Nordic Journal of Human Rights, 32(4), 291–311. https://doi.org/10.1080/18918131.2015.957458 ​ ​ ​ ​ ​ ​ ​ Vandenhole, W., Turkelli, G. E., & Hammonds, R. (2014). Reconceptualizing human rights duty-bearers. In A. Mihr & M. Gibney (Eds.), The SAGE Handbook of Human Rights (pp. 1031–1046). Sage. https://doi.org/10.4135/9781473909335 ​ ​ ​ ​ ​ Wainwright, O. (2019). ‘Is this going to be a joyous place?’ … the architects asking revolutionary questions. The Guardian. https://www.theguardian.com/artanddesign/2019/may/29/joyous-place-public ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -practice-architects-shocking-questions-harlow-garden-town ​ ​ ​ ​ ​ ​ Webb, J. (2005). Law, ethics and complexity: Complexity theory and normative reconstruction of law. Cleveland State Law Review, 52, 227–242. Wolfensberger, W. (1969). The Origin And Nature Of Our Institution Models. Human Policy Press. Worm, I. (2012). A Human Rights-Based Approach to Disability. Published by Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) for (German) Federal Ministry for Economic Cooperation and Development (BMZ). Yanni, C. (2003). The linear plan for insane asylums in the United States before 1866. Journal of the Society of Architectural Historians, 62(1), 24–49. https://doi.org/10.2307/3655082 ​ ​ ​ ​ ​ Zola, I. K. (1989). Toward the necessary universalizing of a disability policy. The Milbank Quarterly, 67(2), 401–428.

39. Narrative 12: The draining expectations placed upon marginalised groups Mac Zamani

Growing up whilst having your identity marginalised by society is often quite overwhelming. You are expected to be perfect and exceptionally successful. Being placed on this pedestal is exhausting, but young people are forced to stay there to avoid being ostracised. Disabled people like me are seen as inspirational just for being in public. People come over to me and give me high fives and hugs and claps for simply existing. These things aren’t inherently inspiring, but when they are seen as such, it leaves a strong message that disabled people’s lives are only valued to make non-disabled people feel better about themselves. For disabled people like me, these unsustainable expectations look like ‘inspiration porn’. We must be constantly happy and bubbly, maintaining an un-wavering positive outlook on life. No space to complain about any issues or discrimination. If we do express anything outside of the ‘designated happy’, it all changes. We are no longer seen in a pure, positive light, instead being told that we need to stop complaining and be grateful that we are allowed to exist. Disabled people must either climb Mount Everest or be totally helpless. Society’s expectations don’t allow for an in-between. We are told we are burdens to society with no benefit. However, society is able to understand that life isn’t all perfect and happy for non-disabled people, so this expectation isn’t enforced for them. Importantly, non-disabled people are allowed to share how they feel without being silenced. Of course, sometimes disabled people are inspiring, but it is important to consider if you would think that person was inspiring if you didn’t know they had a disability. You will probably find thinking about a non-disabled person doing the same thing wouldn’t evoke much inspiration in you. Chances are, you have been conditioned to think disabled people’s existence is worth ‘inspiration’, or nothing at all. This shows how society values disabled people. We aren’t valued for our own knowledge, experiences or passions. We are instead there to better the lives of non-disabled people. Living with these expectations is exhausting and unsustainable. Disabled peoples’ lives should be valued and appreciated regardless of the benefit non-disabled people want from us.

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40. Alternative community living practices in Taiwan: rethinking de-institutionalization and the human rights model Heng-hao Chang and Yi-Chun Chou

INTRODUCTION Article 19 of the Convention on the Rights of Persons with Disabilities (CRPD) states that people with disabilities have the right to live independently and be included in the community. Although Taiwan ratified the CRPD in 2016, the country relies heavily on families to support people with disabilities. Thus, the implementation of Article 19 has raised various concerns for the government, parent groups, and disabled people’s organizations (DPOs). Some parent groups believe that Taiwan needs more institutions for people with intellectual disabilities. DPOs suggest that the government should emphasize community living and independent living services. This chapter investigates community care policies for people with disabilities and discusses the trajectory of community living reform in Taiwan. We trace the historical context of the welfare regime and disability policy. Subsequently, we discuss the local understanding of institutions, the implications thereof, and the local community’s resistance to the community living programme. In addition, we consider the responses from directors of institutions and parent groups, and address the practices and concerns of various residential care facilities. We also explore alternative practices such as ageing family group homes and segregated residential care facilities in the community that support people with disabilities to be a part of the community in Taiwan. Finally, we discuss the implications and challenges of the CRPD’s Article 19 in a non-Western context. The post-colonial approach in this study reflects the historical, social, and cultural aspects of community living in a non-Western context, namely, Taiwan, and reconsiders the impacts and limitations of the CRPD, which are mainly based on the individual rights model of the North.

LITERATURE REVIEW Human rights activists consider the ratification of United Nations human rights conventions to have a positive impact on domestic human rights practices (Risse et al., 1999). However, Cortell and Davis (2000) suggest that this assumption is too optimistic and usually lacks empirical evidence to support the claim. Hafner-Burton and Tsutsui (2005, p. 1373) call this ‘the paradox of empty promise’. The impact of international human rights treaties on domestic politics depends on the regime types and domestic civil society. Ratification of human rights alone does not necessarily enable the state to improve domestic human rights practices. In some cases, the impact is even negative, with the treaty worsening the human rights record.

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Alternative community living practices in Taiwan  471 However, the connection between domestic civil society and international civil society has a significant impact on local activists promoting domestic human rights practices. How do domestic factors contribute to the implementation of international treaties? International relations, regime type, the role of non-governmental organizations (NGOs), and local culture have been identified as the main factors. Zwingel (2012) argues that implementation is not a linear process of cultural diffusion, but involves international politics, state–society relations, and central government–local government relations. For a democratic government, Kayess et al. (2014) show that local NGOs have been able to share their experiences and make an impact at an international level through the domestic bureaucratic process in Australia. In addition, there is a long history of debate on the tension between universal human rights and local culture. Merry (2006a, p. 64) suggests that culture is not fixed and unchanged; we have to define culture as ‘a set of practices and meanings’. Human rights experts often ignore the societal context of culture and thus are unable to facilitate meaningful communications. Merry (2006b) suggests that NGOs play an important role as agents in translating and vernacularizing human rights language and practices. NGOs must engage with the tensions among laws, values, and governments (Merry et al., 2010). Golan and Orr (2012) suggest that NGOs should find cultural resonance between global human rights conventions and local culture. Scholars of post-colonial disability studies further point out that there is a North/South global divide in the diffusion of the CRPD. The Convention is mostly based on the experiences of industrialized countries and ignores the social historical context of the South. For example, the CRPD challenges the medical model, but in some countries in the South, this model may play an important role in destigmatizing and recognizing disability (Meekosha & Soldatic, 2011). Meyers (2014) shows that in Nicaragua, the goal of the CRPD is to ‘give voice’ to local grassroots DPOs and NGOs, but transnational NGOs provide human rights advocacy training and the legal framework, which local DPOs have found to be far removed from their own practices on the frontline and have gradually withdrawn from these training programmes. Meyers (2016) points out that in Nicaragua, local NGOs have relied heavily on funding from industrialized countries. When transnational NGO funders require human rights advocacy to be the main principle, it marginalizes local NGOs that provide direct services. To connect to the transnational NGOs network, local NGOs must develop different professionals and participate in international workshops, which easily excludes grassroots NGOs (Meyers, 2016). Huang (2020) shows that under an authoritarian regime, the transnational disability rights discourse is an enclave of rights in China, although the transnational disability rights network has brought about some changes in disability practices. Scrutinizing the CRPD closely, we observe that General Comment No. 5 clearly points out the important role of the government in the process of de-institutionalization. This suggests that the continued existence of institutions may be one of the reasons for people with disabilities not to be included in the community. While there has been some success in industrialized countries to support independent living and provide community-based care, in many non-Western countries, de-institutionalization is still a challenge (Mladenov & Petri, 2020; Soffer et al., 2017; Vann & Šiška, 2006). Mladenov and Petri (2020) show that the historical context and current budget cuts in social support in Hungary and Bulgaria have led them to use new funding from the European Union to repair existing institutions and build new ones under the CRPD. In other words, the implementation of the CRPD varies depending on the social and historical context.

472  Research handbook on disability policy In summary, the impact of international rights treaties on local societies varies. International politics, state–society relations, the role of NGOs and DPOs, local cultures, and the assumptions of industrialized countries in the human rights model need to be considered. In particular, few studies have focused on disability rights in East Asian regimes, considering the trajectory of welfare state formation and paternalistic family culture. The post-colonial approach provides a new framework to address the historical context and cultural differences in disability rights rather than taking the experiences of the North as the standard. This chapter examines the local response and resistance in Taiwan to the ratification of CRPD’s Article 19. Taiwan provides a unique case of a democratic country not included in the official UN system, which provides a case study for reconsidering transnational rights discourse and local practice. First, we examine the historical context of disability policies and the community living policy, and discuss the definitions and meanings of institutions. Then, we discuss the challenges of de-institutionalization in Taiwan. Finally, we explore alternative practices. Data include official documents, newspapers reports, and government reports. Both authors were also involved in the process of implementation and dialogue among NGOs, DPOs, government agents, and international experts.

HISTORICAL CONTEXT: FAMILIALISTIC WELFARE REGIME AND DISABILITY POLICY IN TAIWAN Taiwan was a colony of Japan before World War II. The Kuomintang (KMT, Chinese Nationalist Party) retreated from China in 1949 after losing the Chinese civil war to the Chinese Communist Party. The KMT government ruled Taiwan under Martial Law until 1987, and gradually developed a modern welfare system from the 1960s. The welfare regime of Taiwan, Japan, South Korea, and other East Asian countries is often referred to as a ‘productive welfare regime’ (Holiday, 2000) or ‘familialistic regime’ (Croissant, 2004). The discourses on the productive welfare and familialistic regimes differ; the former focuses on the relationship between economic development and social policies, while the latter focuses on the impact of culture on social policies. However, the lack of public care policies and family-based care models characterize both welfare regime discourses. These features appear across childcare, elderly care, and disability care. Regardless of the kind of group care, care responsibilities mostly depend on the family. Social policies and support for mental illness and intellectual and/or multiple disabilities have taken very different trajectories and are governed by different government agencies. The mental health support system was developed along the lines of the institutionalization of the Western mental health system. Huang (2018) argues that in the 1960s there was a de-institutionalization movement in many Western industrialized countries. It was also the time that the Taiwanese government started to build large mental health institutions in the remote town of Yuli in Hualien county. These institutions were built mainly to accommodate war veterans from China, who were forced to move with the KMT and did not have family in Taiwan. From the 1980s to 1990s, mental health programmes and institutions expanded quickly, with many large mental health institutions established and beds for mental health patients increasing from 6,000 to 12,000. In this period, mental health issues became medicalized and the government actively applied the medical model to people with mental health issues by starting to regulate private and religious mental health institutions (Tang, 2018).

Alternative community living practices in Taiwan  473 In the same period, led by mental health professionals, the government started to develop hospital-based mental health community rehabilitation programmes to support mental health patients to stay in the community (Wu, 2019). In other words, before the 1990s, large mental health hospitals/institutions and hospital and community-based programmes were developed about the same time and were mostly based on the medical model. Institutions in Taiwan can be categorized as those for people with mental disabilities and those for people with intellectual disabilities. The accommodation institutions for people with intellectual disabilities are run by the social welfare department, while those for people with mental disabilities are run by the medical and health department. To save space and given the complexities of mental health professionalization and its relationship with social policies, the analysis in this chapter addresses only institutions and community care for people with intellectual disabilities and/or multiple disabilities. It is worth mentioning that, before the 1990s, many institutions did not make clear distinctions among mental illnesses, psycho-social disabilities, and intellectual disabilities. Taiwan’s first disability legislation was the Welfare Law for Handicapped Persons in 1980, which supported the development of institutions in law. Sun (2004) argues that before the democratic transition in Taiwan in the late 1980s, the government basically neglected the rights of people with disabilities. Their well-being was considered the responsibility of their families. Since then, parents’ organizations have advocated for government intervention, regulation of private institutions, and provision of more services. Only in 2002 were all institutions regulated by the government (Sun, 2004). However, a few studies done by disability NGOs have conducted systematic reports and advocated for community-based services (Tsao, 1992). De-institutionalization was not seriously addressed as Taiwan had only the choices of non-regulated institutions or family support. Before 1999, the government continued to encourage the establishment of institutions by subsidizing personnel and improving the infrastructure of institutions by law. In other words, before 1999, the disability policy de facto aimed at addressing the issue of regulating private institutions and improving the quality of these institutions, not community living and de-institutionalization. Community-based principles and reducing the size of institutions first appeared in the Physically and Mentally Disabled Citizens Protection Act of 1997. In 2007, the People with Disabilities Rights Protection Act no longer replaced the word ‘institution’ with ‘residential care’. Table 40.1 presents statistics on disability services. In general, the numbers of disability services increased from 193 in 2001 to 276 in 2010 and decreased slightly to 267 in 2020. The number of government-funded disability services did not increase significantly over this time (from 11 to 14), while private disability services increased from 134 to 179, and publicly owned and privately managed disability services increased from 48 to 76. In other words, the government did not expand the welfare regime, but promoted publicly owned and privately managed facilities for service delivery. A close look at only residential facilities (night accommodation institutions and all-day accommodation institutions) shows that Taiwan had 157 such institutions in 2008 and 172 in 2020 (Ministry of Health and Welfare, 2021a). As of April 2021, there were 173 night accommodation institutions and all-day accommodation institutions. According to data, as of the end of 2021 (Ministry of Health and Welfare, 2021a), there were 13,115 people with disabilities living in residential care facilities in Taiwan (Ministry of Health and Welfare, 2021a). This means that there was no significant decrease in the number of residential institutions for people with intellectual disabilities in Taiwan, before and after the implementation of the CRPD. However, most new residential facilities were not directly

474  Research handbook on disability policy Table 40.1   2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020

Numbers of disability services Total

Public

Private

193 223 241 244 244 248 254 264 270 276 271 271 276 273 271 272 271 271 269 267

11 12 13 15 14 15 15 16 16 16 15 15 15 14 13 14 14 14 13 12

134 159 176 175 178 179 182 185 187 193 189 189 192 189 182 182 183 183 182 179

Publicly owned and privately managed 48 52 52 54 52 54 57 63 67 67 67 67 69 70 76 76 74 74 74 76

Note: The services including night accommodation institutions, all-day accommodation institutions, day service facilities, and welfare centres, but excluding nursing homes, 2001–2020. Source: Ministry of Health and Welfare (2021a).

founded by the government, but regulated or privately managed and publicly owned by the government. Overall, the ratification of the CRPD in 2016 did not have a significant impact on reducing the numbers of residential care facilities. The government had come to gradually rely on residential care facilities through publicly owned and privately managed residential facilities. Although Taiwan is not a member of the United Nations, it enacted the Implementation Law of the Convention on the Rights of Persons with Disabilities in 2014. The Taiwanese government submitted its first state report in 2016, and invited international review committees to complete the first international review and provide concluding observations in 2017. One of the recommendations of Article 19 was to ‘develop a time limited plan for the phasing out of residential institutions’ (International Review Committee, 2019, p. 13). In Taiwan’s community care context, a careful policy analysis shows that de-institutionalization and community living have been the most controversial disability policies in Taiwan since the 1980s. Care responsibility for people with disabilities in Taiwan is mainly family based. According to a government survey (Ministry of Health and Welfare, 2016), about 94% of people with disabilities live with their families, although some community services have expanded rapidly. The focus groups done by Chou and Lin (2020) show that many parent groups have argued that the de-institutionalization principle of the CRPD is inappropriate for Taiwan, mainly because of the different social context, differences in size and localization of institutions, and lack of services for community living. In addition, other factors make de-institutionalization in Taiwan more difficult and complicated, including the ageing of

Alternative community living practices in Taiwan  475 people with disabilities and their family caregivers, community resistance, and parents’ high expectations for all service-integrated accommodation institutions (Chou & Lin, 2020).

INSTITUTIONS IN TAIWAN’S CONTEXT: SIZE, LOCATIONS, AND PARTICIPATION IN COMMUNITY The criticism of residential institutions for people with disabilities is often directed toward the large numbers of people with disabilities in institutions, resulting in an inability to provide individualized services, while the geographical distance between institutions and local communities leads to social exclusion from their communities (Hewitt, 2014). However, a 2020 survey of residential institutions for people with disabilities (Chou & Lin, 2020) shows that, in the context of Taiwan, residential care facilities for people with intellectual disabilities are not always the same as those of large and isolated institutions of the West in the past. Chou and Lin’s (2020) survey shows that nearly 41% of residential institutions for people with disabilities in Taiwan have less than 50 residents, nearly 28% have between 50 and 100 residents, 26% have between 100 and 200 residents, while the remaining 5% are large institutions with more than 200 residents (Figure 40.1). In terms of geographical location, 72.4% of these residential facilities are close to a convenience store, while 27.6% are not. Nearly 70% of residential care facilities provide only residential services, and the remaining 30% operate various types of community-based disability services programmes. In other words, nearly half of Taiwan’s residential facilities, or so-called institutions, are relatively small in scale and are located at relatively convenient locations, while a significant percentage of residential care facilities provide community-based disability services, such as day programmes. It goes without saying that these Taiwanese residential facilities are ‘institutions’. However, in a country heavily reliant on family care, and with support for community living not in place, many parents and service providers believe that the government should build new institutions for people with intellectual disabilities and that parents should have more choices. Chou and Lin (2020) interviewed the directors of eight residential care facilities on the challenges of de-institutionalization in Taiwan. Many directors of residential care facilities believe that the current locations of Taiwan’s institutions are generally very close to the community and that residential care facilities provide activities that allow people with disabilities who live in institutions to participate in the community, for example, by shopping, visits, and joining regular community activities. Simultaneously, the residential care facilities also invite community residents to the institution to participate in various celebrations. In other words, people with disabilities are not completely isolated from the community. From the perspective of the directors of residential care facilities, institutions have helped the families of people with disabilities. If people with intellectual disabilities were de-institutionalized and returned to live with their families, most families could not provide quality care, which would cause even greater problems. Some interviewed directors stated that they were not against de-institutionalization, but there might still be people with intellectual disabilities who wanted to live in institutions, and various service options should coexist to provide people with disabilities and their families with more choices (Chou & Lin, 2020). In addition, the ageing of the people with intellectual disabilities and their family caregivers make it more difficult to transfer people with disabilities from institutions back to the community. According to a survey conducted by Parents’ Association for Persons with Intellectual

476  Research handbook on disability policy

Source: Chou and Lin (2020, p. 54).

Figure 40.1

Proportion of residential facilities by number of service users (numbers of residential facilities=152)

Disabilities (PAPID), over 37% of people with intellectual disabilities are over 45 years old. These older residents might have stayed in the residential care facilities for a fairly long period of time or have no ‘living family members to return to’ (PAPID, 2019).

LACK OF COMMUNITY SUPPORT AND POSITIVE COMMUNITY ATTITUDE TOWARD PEOPLE WITH DISABILITIES Community-based services for people with intellectual disabilities in Taiwan initially focused on early intervention services for children with disabilities during the 1970s. However, community-based services for adults with intellectual disabilities, including all-day and night accommodation services, started very late in Taiwan. In practice, the general social perception of community living is that people with intellectual disabilities should be supported by their families (Chou & Kröger, 2004). There was only one model for community night accommodation services, namely, a ‘group home’ in which six people with intellectual disabilities live in an apartment in the community and service personnel provide services only at night. The model was initiated in 2001 by non-profit organizations (NPOs) that specialize in services for people with intellectual disabilities. In 2004, the government began to subsidize group homes. The group home programme formally became a statutory service in 2012 and community day

Alternative community living practices in Taiwan  477 services for adults with intellectual disabilities also began to develop at around the same time. The government began to subsidize NPOs for community day services in 2005, and these services became statutory services in 2012 (Chou, 2018). Taiwan’s community group home programme started in 1984. It was originally a programme developed by the Hsin-lu Foundation; in 2004, it became a public service. However, due to community resistance and high housing prices, the development of community group home programmes has been quite slow. In 2015, there were 96 community group home units in Taiwan; by 2020, this had only increased to 106 units. If each unit provides accommodation places for six people with disabilities, this indicates a small increase of only 60 places in five years, which simply cannot accommodate the huge demand for the needs of people with intellectual disabilities, especially if the government were to close all residential care facilities in the name of de-institutionalization. Many countries have moved people with disabilities out of institutions to live in group homes in the community. However, Taiwan developed group homes for people with intellectual disabilities to move away from their family. In some cases, these group homes are an intermediary place for people with disabilities before they are transferred to an institution (Chou & Lin, 2020). To increase the rate of growth of community group home services and accelerate the process of de-institutionalization, in 2021, the Ministry of Health and Welfare in Taiwan began to promote a new programme to assist institutional operators to develop and provide group home services in the community. The development of these services would enable them to transfer residents of the institutions to the group home programmes, according to their wishes and conditions. If a disabled person adjusts well to the group home, he or she would be able to leave the institution and be integrated into the community. The Ministry of Health and Welfare promised to work with local governments to resolve community resistance and subsidize rent for people with intellectual disability, so that they can transfer from institutions to community group home services (Ministry of Health and Welfare, 2021b). A small number of people with intellectual disabilities, who lived in institutions, subsequently returned to live with their elderly parents. However, for the most part, Taiwan’s home services and community-based services for people with intellectual disabilities are still not in place, and thus, people with disabilities might be sent back to full-day institutions. Determining the effect of this programme will take time and observation. In addition, independent living services, including personal assistance, were legalized and became the official support for people with disabilities in 2011, with the aim of supporting people with disabilities to live independently in the community. However, people with intellectual disabilities seldom use the services. The concept of independent living does not receive social recognition, and the funding and resources for independent living are limited (Chou et al., 2021). Official statistics from February 2021 (Ministry of Health and Welfare, 2021c) show that more than 90,000 people with disabilities in Taiwan use long-term care home services. Approximately 9,350 people with disabilities use long-term care community services, and about 7,375 people with disabilities use community services for people with disabilities, including community care-oriented day programmes, community work-oriented programmes, and foster family services.1 At the end of 2020, there were only 512 personal assistants and only 689 people with disabilities used such services (Ministry of Health and Welfare, 2021d). These services are not sufficient to serve people with disabilities currently living at home. In addition, the maximum time allowed for long-term home care services is only 90 hours per

478  Research handbook on disability policy month, which is not sufficient for people with disabilities who need intensive support. There is simply a lack of support systems in the community for residents in institutions to move back to the community. In other words, the lack of accessible community-based services for people with disabilities is the most important unsolved issue for de-institutionalization in Taiwan. Although there are differences in institutions in terms of size, location, and number of residents, over 61% of residential care facilities still have 50 or more people with intellectual disabilities, and thus certainly can still be regarded as ‘institutions’. Another challenge for promoting community-based care and de-institutionalization comes from community resistance, the so-called ‘not-in-my-backyard’ (NIMBY) attitude. For both daytime and night-time services in the community, Taiwan has encountered such resistance to integrating people with disabilities. In 1982, residents of Taipei city protested about an early intervention centre for children with intellectual disabilities. The protest ended with police escorting children with disabilities into the early intervention centre. This first community resistance against community services for people with disabilities kick-started the promotion of disability rights in Taiwan by parents’ organizations and disability rights organizations for education, work, transportation, and community living (Chang, 2007). However, Chiu and Lo (2011) point out that, since 1983, the NIMBY resistance to people with disabilities has not ended, and discrimination has been evident across disability services, special schools, group homes, and community rehabilitation centres. The ratification of the CRPD in 2016 did not have much impact on community resistance against community-based support in Taiwan. We searched newspaper reports from 2016 to 2021, and identified at least seven NIMBY protests against the construction of group homes or day services for people with disabilities. Most community services for people with disabilities are provided by NPOs, which constantly face community resistance. Their only recourse is to rely on media reports to create public awareness or to request representatives to communicate with local governments. Other than these interventions, the NPOs found that there is almost nothing they can do to deal with the malicious NIMBY behaviour of residents. Sometimes, community residents even lobby representatives to put pressure on the local government to halt the establishment of community services for people with disabilities, resulting in the postponement of community-based services. Taiwan does not have an anti-discrimination law for people with disabilities. The People with Disabilities Rights Protection Act contains the following in Article 16: ‘People with disabilities should not be discriminated against in terms of education, (examination) participation, employment, residence/housing, migration, and medical care service’ (Ministry of Health and Welfare, 2021e). However, the legislation does not provide definitions of, or penalties for, discrimination against people with disabilities. Although the Taiwanese government has commissioned research on equality laws related to anti-discrimination, there is still not significant progress in the current anti-discrimination legislation.

ALTERNATIVE PRACTICES: TWO GRASSROOTS INITIATIVES Some interesting alternative approaches have emerged for developing Taiwanese-style residential care facilities: ageing family group homes and segregated residential care facilities in the community.

Alternative community living practices in Taiwan  479 Institutions in the Community The Dong-Ming Love Support Group Home (Dong Míng Fú Ai Jia Yuan) is a new residential care facility. It is an isolated building with five floors located in the large Dong-Ming public housing project of the Taipei city government. It is now managed by a parents’ NGO, Yu-Chen Foundation. The group home provides 24-hour residential care for 48 residents aged above 40 years and day-care for 22 people with intellectual and multiple disabilities. One room in the group home is shared by four residents, and there is an additional living room and dining room shared by 12 residents. The housing project was completed in August 2018, but because of protests from the residents of a public housing project, it postponed operations to August 2019 and officially started to take in residents in December 2019. Professor Chou Yi-Chun from the Department of Sociology, Soochow University, suggests that the project does not aim to ‘bring people with intellectual disabilities to the community, it is a way to bring service to the community. People with intellectual disabilities have been living in our communities. We must protect their rights to use services’ (Jhan, 2019). The community living policy should not only make people with intellectual disabilities stay in the community but also ensure services and support are available in the community. Otherwise, people with intellectual disabilities would easily be isolated in the community. Nevertheless, from a Western viewpoint, ‘community living’ does not entail building a new segregated five-floor apartment located in a larger apartment complex to host fairly large numbers of residents with intellectual disabilities and/or multiple disabilities. It is still an institution; however, from the perspective of parents of people with disabilities, Lài Fong Fú, the managing director of the board of the Yu-Chen Foundation, suggests: Taiwan is entering a ‘a double aging’ society. Parents and their adult children with intellectual disabilities are aging and parents can no longer take care of their adult children. It is the government’s immediate priority to develop more residential care facilities as homes for adults with intellectual and/ or multiple disabilities. (Syǔ, 2020)

Dong-Ming is not the first new residential care facility. The Taipei city government has built the Nan-kang group home, and other city governments also plan to build more residential care facilities for adults with intellectual disabilities (Syǔ, 2020). Ageing Family Group Home Parents and family play an important role in supporting people with intellectual disabilities. Taiwan relies heavily on the family to provide support for people with disabilities. A group of parents of autistic children in the north of Taiwan took the lead in developing a new community living model, which many parent groups have subsequently started to follow. This new model was called the ‘ageing family group home’. Many adult children with disabilities live with their parents in Taiwan, and these families live together with other families in similar situations in a community. The precise setup varies: some families live in different units of the same apartment blocks, while others buy land and build new communities consisting solely of double-ageing group homes. These families support each other and jointly develop new projects, such as opening a restaurant or jointly operating a farm to provide a place for adult children with disabilities to work during the day (Tseng, 2021a). For example, the Lin Kǒu Aging family group home is located within the larger Lin Kǒu social housing project, which

480  Research handbook on disability policy has a total of 3,500 units. Families with adult children who have autism occupied almost the entire fifth floor with 19 out of 20 units. The other unit is rented by a high-functioning person with autism. The leader of the ageing family group home said that: Persons with autism cannot live independently. Parents have to take care of them even when they reach adulthood. When asked what would happen if parents pass away first, he replied: ‘Most parents of children with autism hope that we will live just one day more than our children.’ (Liu, 2021)

Those parents did not trust the quality of care provided by the government or government-supported residential care facilities and community-based services. They also did not want their other non-disabled adult children to be responsible for taking care of their siblings (Tseng, 2021b). Therefore, they considered the best arrangement was to allow families in similar situations to live together in one place and to take care of each other. In other words, a parent in Lín Kǒu has established a ‘residential institution for families’, because the parents believe that they can better monitor how professionals provide services for their adult children with disabilities (Tseng, 2021b). Indeed, it is different for people with disabilities to live with family members versus in institutions with more than 100 people with disabilities and professionals. The model raises more questions than answers. Does it mean that living with families in a community leads to de-institutionalization? Alternatively, is the double-ageing community another type of institution? Is it possible for people with disabilities in double-ageing group homes to control their own lives? Will they always have to live with their parents? Can this kind of living model be regarded as a community model or an institutional model, or a balance between the two? What happens if a child’s parents pass away or can no longer support their adult child with intellectual disabilities? These questions need to be addressed. Nevertheless, the ‘residential institution for families’ model provides timely solutions for a family that does not have family community living support but is reluctant to send an adult child with intellectual disabilities to an institution. The ageing family group home and institution in the community are an alternative practice for community living in Taiwan. They are not Western concepts of institutions located in remote areas far from a community, but instead are an embodiment of community living or the Western-style group home, where residents can live in a normal family-like home with privacy, community participation, fewer co-habitants, and very limited or no institutional rules and restrictions. The double-ageing community accommodates the family’s willingness to continue to support their adult children with disabilities and to create mutual support systems among families that have adult children with disabilities. However, it is not clear what would happen when the parents can no longer support their adult children with disabilities. The policy is certainly questionable by international disability rights standards because it is based on the sacrifice of the family through a labour of love.

DISCUSSION AND CONCLUSION The human rights model of disability confers rights on people with disabilities to live in the community and participate in an inclusive society. This chapter uses the CRPD and community care policy for people with intellectual disabilities in Taiwan as a case study to address the impact of the CRPD in the Global South. Hafner-Burton and Tsutsui (2005) suggest that the

Alternative community living practices in Taiwan  481 impact of international conventions varies depending on international politics and domestic state–society relations. In our study, we show that a country excluded from the UN system still commits to ratifying the CRPD. In addition, in a democratic society, the implementation of disability rights is embedded in its historical development of the welfare regime and local culture. First, we argue that the CRPD was developed from the experiences of the Global North and show that, historically, Taiwan does not have a strong de-institutionalization movement. Since the 1980s, when the government started to develop disability policies, it sought to regulate private, non-registered institutions and encouraged the existence of qualified residential care facilities. Second, if we examine the residential care facilities closely, they are smaller than large institutions in the West, are located within communities, and promote some form of community participation activities for people with intellectual disabilities. Third, Taiwan’s community-based support and group home programme developed from the 2000s, but its coverage and accessibility are still very low. Community-based support, like day-care community centres or group homes, still face strong NIMBY resistance from communities. Since the ratification of the CRPD in 2016, new community-based support has been provided through the long-term care policy and independent living service, but overall, the CRPD has neither brought significant development of community-based support nor closed existing institutions. Finally, we showed that Taiwan has developed alternative support for people with intellectual disabilities and their families, such as ageing family group homes for multiple families of parents and their adult children with intellectual disabilities in communities. Institutions in the community model support residential care facilities for ageing families within the larger community and promote community participation activities. Neither model is an ideal community living arrangement. Moreover, they emerged as a local response to community resistance based on parents’ commitment. The post-colonial approach (Meekosha & Soldatic, 2011) argues that the social model and the CRPD have been built from Western industrialized countries’ experiences, and neglect the historical and socio-cultural contexts of the Global South. This chapter shows the trajectory of community living in Taiwan and the contradictory responses from the government and society to CRPD. When the de-institutionalization movement emerged in industrialized countries, Taiwan started to develop disability policies by regulating private institutions and encouraging more social support. De-institutionalization had some impact in that the Taiwanese government did not develop large institutions away from mainstream society and instead developed local residential care facilities to support people with intellectual disabilities. Although they are located within a community, they are not necessarily supported by community members. It is a paradox of community facilities, in which they exist spatially in the community, but are not socially accepted. Although ratification of the CRPD international review committee challenges the current practices, the Taiwanese government has not made a clear commitment or provided deadlines to close existing institutions and reform the current system to community living. Why has the ratification of the CRPD not brought the policy changes expected? First, in terms of international politics, Taiwan is isolated from the international community, and was excluded from the drafting process and ratification of the CRPD. The CRPD review was undertaken by the Taiwanese government and was not part of the official UN mechanism. There was no meaningful dialogue on the implementation of the CRPD. Ratification is a political statement, and is not necessarily aimed at transforming local policies. Second, NGOs, DPOs, and parents’ organizations have different opinions and interpretations of the

482  Research handbook on disability policy CRPD. In a conservative and familialistic social welfare regime, the socio-cultural environment emphasizes parents’ and families’ responsibility, and not the independent living and self-determination of people with intellectual disabilities. Furthermore, more dialogue among different agents is needed. Finally, significant weaknesses and uncertainties remain, and alternative arrangements that have developed Taiwan could challenge the current understanding of institutions and community. ‘Institution’ is not just about the size of the place and the number of people who live there. It is about attitude, it is about control, it is about lack of choice, it is about lack of respect, it is about lack of opportunity, and it is about lack of relationships and being IN the community but NOT a part OF the community. (Hewitt, 2014, p. 483)

The implementation of the CRPD amid community resistance in Taiwan enables us to rethink the boundaries between institution and community living. A post-colonial approach reminds us that human rights practice should not take Western social and cultural experiences as the standard. The lesson from Taiwan shows that without a welfare state tradition, familialistic welfare ideology and policies would assume a family duty in disability policy. Owing to lack of social support, people with disabilities are institutionalized ‘at home’ with their families. Culturally, parents of adult children with intellectual disabilities also assume family responsibilities for caring for adult children with disabilities. The ratification of the CRPD has triggered debate regarding institutional care and community care, but the real unsolved problems may be between the right to care and family responsibilities. This chapter shows that institutions in the community and ageing family group homes are just two cases of local parents finding a way to survive, when the government is hesitant to provide more comprehensive community care support and when institutional care is no longer welcome by parents.

NOTE 1.

Start of endnote. This is based on an interview from the staff of the office of CRPD affairs in the Ministry of Health and Welfare. End of endnote.

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484  Research handbook on disability policy Ministry of Health and Welfare. (2021b). Minutes of the Second Meeting of the Seventh Session by Committee for Protection of the Rights for People with Disabilities. https://www.sfaa.gov.tw/SFAA/ ​ ​ ​ ​ ​ ​ Pages/Detail.aspx?nodeid=920&pid=10572 ​ ​ ​ ​ ​ ​ ​ ​ ​ Ministry of Health and Welfare. (2021c). Number of Users of Long-term Care Services for Indigenous Peoples and Persons with Disabilities. https://1966.gov.tw/LTC/cp-3948-45001-201.html ​ ​ ​ ​ ​ ​ ​ ​ ​ Ministry of Health and Welfare. (2021d). Overview of Program for Personal Assistant and Independent Living in Local Governments. https://dpws.sfaa.gov.tw/statistics-detail-12.html ​ ​ ​ ​ ​ ​ ​ ​ Ministry of Health and Welfare. (2021e). People with Disabilities Rights Protection Act. https://law.moj ​ ​ ​ .gov.tw/Eng/LawClass/LawAll.aspx?PCode=D0050046 ​ ​ ​ ​ ​ ​ ​ ​ Mladenov, T., & Petri, G. (2020). Critique of deinstitutionalisation in postsocialist Central and Eastern Europe. Disability & Society, 35(8),  1203–1226.  https://doi.org/10.1080/09687599.2019.1680341 ​ ​ ​ ​ ​ ​ ​ Parents’ Association for Persons with Intellectual Disabilities (PAPID). (2019). Report on the development and assessment of multiple aging care special integrated service of disability welfare institutions. Ministry of Health and Welfare. Risse, T., Ropp, S. C., & Sikkink, K. (1999). The Power of Human Rights: International Norms and Domestic Change. Cambridge University Press. Soffer, M., Koreh, M., & Rimmerman, A. (2017). Politics of geographic exclusion: Deinstitutionalization, hegemony and persons with intellectual disability in Israel. Disability & Society, 32(8), 1180–1198. https://doi.org/10.1080/09687599.2017.1344825 ​ ​ ​ ​ ​ ​ ​ Sun, Y. S. (2004). Their choice or the state’s negligence?: An examination on the political-economic context behind the rise and fall of unregistered institutions for the mentally disabled (in Chinese). [Unpublished Master’s Thesis, Shih-Hsin]. Syǔ, L. (2020, October 31). North City’s first ‘smart’ disability institution, Dong-Ming helps love the Homeland to become a shelter for the elderly family. Apple Daily. https://tw.appledaily.com/life/ ​ ​ ​ ​ ​ 20201031/Z573CWWRVFFNNFPK72IBS4IAZU/ ​ ​ ​ ​ Tang, Jjia shuò. (2018). Long Fa Tang and modern mental health, 1980–1990. In Y.-Y. Tsai & C.-H. Chen (Eds.), Abnormal People? Psychiatry and the Governance of Modernity in Taiwan (pp. 459–503). Linking Publishing Company. Tsao, A.-L. (1992). Research and report on the development of community-based social welfare for people with intellectual disabilities in Taiwan. Association for Mentally Handicapped Persons. ROC. Tseng, K-H. (2021a). De-institutionalization? Who can share the care burden for families of disabled persons. Radio Taiwan International. https://www.rti.org.tw/news/view/id/2086216 ​ ​ ​ ​ ​ ​ ​ ​ Tseng, K-H. (2021b). Difficulties for finding institutions for persons with disabilities. Radio Taiwan International. https://www.rti.org.tw/news/view/id/2086215 ​ ​ ​ ​ ​ ​ ​ ​ Vann, B. H., & Šiška, J. (2006). From ‘cage beds’ to inclusion: The long road for individuals with intellectual disability in the Czech Republic. Disability & Society, 21(5), 425–439. https://doi.org/10 ​ ​ ​ ​ .1080/09687590600785811 ​ Wu, H. (2019). Community mental health service in Taiwan. In C.-Y. Yang & R. L. Wu (Eds.), Community Mental Health Service and Counselling (pp. 36–56). The Commercial Press. Zwingel, S. (2012). How do norms travel? Theorizing international women’s rights in transnational perspective. International Studies Quarterly, 56(1), 115–129. https://doi.org/10.1111/j.1468-2478 ​ ​ ​ ​ ​​ ​ ​ .2011.00701.x ​ ​

41. Mainstreaming disability in Indonesian development: rethinking disability citizenship to move beyond a welfare focus Antoni Tsaputra and Eban Pollard

INTRODUCTION Poverty remains a critical issue for people with disability in the global South because disability and poverty are mutually reinforcing. Estimations indicate that 82 per cent of people with disability in the global South are in poverty and one-fifth of the world’s poorest people experience disability. This evidence contributed to a welfare approach to policies for people with disability in the global South that is narrowly focused on poverty reduction (Karr et al., 2016; United Nations Department of Economic and Social Affairs (UN DESA), 2015). While poverty has long cemented disability as a development issue, the barriers to basic human needs that disabled people living in poverty in the global South confront – such as lack of food, unreliable health services, sanitation, inadequate infrastructure, and remoteness – require a broad range of policy responses, referred to as disability mainstreaming in development. It is not sufficient to focus on poverty alleviation only. Indeed, the issues that people with disability face cut across sectors and require cross sector responses (Stein & Stein, 2014) and input directly from people with disability. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) has heralded a comprehensive paradigm shift from a social welfare approach to disability to a human rights approach to disability, including within State-led development policy. The UNCRPD commits State parties to disability mainstreaming in development by sharing responsibility for disability among all government ministries and branches (Adioetomo et al., 2014; Mji et al., 2009). It also commits State parties to including people with disability in development. Disability-inclusive development, as articulated in Articles 4, 32 and 33 of the UNCRPD, recognizes that people with disability have a right to the same opportunities for participation, contribution, decision-making and improving economic well-being as others. With these two commitments taken together, the human rights approach to disability in development means that it is no longer sufficient to just provide the minimum that disabled people need in order to survive or avoid impoverishment. Rather, disabled people and Disabled People’s Organizations (DPOs) need to be actively involved in development across all sectors, to allow progression from being treated as passive recipients. The human rights approach to disability in development, in the example above, has gained significant traction. In 2011, the first World Report on Disability stated that the UNCRPD requires State parties to promote the participation of people with disability in development and to address disability in all development programmes. All actions for achieving the Sustainable Development Goals (SDGs) also need to be inclusive of people with disability and guided by the UNCRPD (Office of the United Nations High Commissioner for Human Rights (OHCHR), 485

486  Research handbook on disability policy 2020). Advancing the rights of people with disability is a prerequisite for the implementation of the SDGs in the pursuit to ‘leave no one behind’ (OHCHR, 2020). Together the SDGs and the UNCRPD position people with disability as key actors in the collective journey of development. The human rights approach to disability in development has also played an important role in elevating discussions about citizenship rights for people with disability (Hilberink & Cardol, 2019; Sépulchre, 2017). The eight general principles of the UNCRPD together reflect the scope of citizenship (Hilberink & Cardol, 2019) and provide a new legal platform from which people with disability can make claims to their rights as citizens. Citizenship rights for people with disability are also closely related to disability-inclusive development. For many, participating in development as active members of society is critical to their achievement of full citizenship (Hilberink & Cardol, 2019). So, while addressing poverty is likely to remain an important development issue for people with disability, disability-inclusive development also calls on governments to uphold and promote rights, participation and citizenship for people with disability when developing and implementing development policy. In disability literature, citizenship covers a broad range of issues, including social justice and rights, political engagement, human rights and participation in community (Sépulchre, 2017). While little has been done to advance the discussion of citizenship and disability in the global South, since the 1990s studies on disability and citizenship from the global North have increased. This was driven by citizenship discourse in academia and politics, the expansion of disability studies with the uptake of the social model and a focus on disability rights, and disabled people’s movements, which make the claim for people with disability as full and contributing citizens as opposed to ‘dependent patients’ (Sépulchre, 2017, p. 953). Recognition and legitimacy have emerged as critical concepts for disability citizenship. Recognition relates to struggles against injustices and the experience of disrespect (Honneth, 1995; Ohlström et al., 2011). While denying recognition is a form of disrespect that can harm disabled people’s positive understanding of themselves (Frohmader & Meekosha, 2012), being recognized as capable citizens can enable their participation and contribution (Lister, 2007; Lorenzo & Coleridge, 2018). While the term legitimacy is used in different ways and situations (Dugan, 2004), Gilson and Depoy (2014) relate legitimacy in this context to citizen participation. Applying Gilson and Depoy’s framework, it is government policy that determines the degree of legitimacy that disabled people enjoy, either as integral, partial or excluded citizens. This chapter begins by reviewing literature showing that disability mainstreaming in development requires more than poverty reduction, and can only be achieved through disability-inclusive development. It then presents the current challenges to realizing disability mainstreaming in development in Indonesia. The chapter concludes by exploring the key role that ‘disability citizenship’ can play in ensuring people with disability are truly included across all areas of the Indonesian development agenda. This chapter argues the term difabel developed by Indonesian disability activists provides a framework to both reconceptualize and drive disability mainstreaming in development beyond a welfare focus: a framework built upon the human rights perspective and obligations of Indonesians with disability, underpinned by the recognition and legitimacy of their own civic identity, and which demands their comprehensive inclusion and full participation in development (Tsaputra, 2019). This understanding of Indonesian difabel citizenship contributes to the literature on disability, development and citizenship, and proposes a new global South model for inclusive disability citizenship.

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THE PUSH FOR DISABILITY MAINSTREAMING IN DEVELOPMENT: AWAY FROM A FOCUS ON POVERTY TO COMPREHENSIVE DISABILITY INCLUSION Over the last decades, particularly since the UNCRPD entered into force, disability has become a very important human rights issue, including in the global South (Katsui, 2008; Schiemer, 2017; Worm, 2012). The heart of a human rights-based approach to disability is recognizing that the rights of people with disability are inalienable and indivisible. In civic life, this positions disabled people as active subjects with legal claims for their rights, and not merely passive recipients of assistance (Worm, 2012). This message, drawn straight from the preamble and articles of the UNCRPD, has been used by disability movements in many countries to push their governments away from welfare and towards human rights-based approaches to disability across all their development policies and programmes (Degener, 2014; McEwan & Butler, 2007). One of the central methods to actualize this vision of a human rights-based approach to disability in development is disability mainstreaming, where disability is integrated into the design, implementation, monitoring and evaluation of all development policies and programmes. The main interrelated principles of disability mainstreaming in development are inclusion and participation of disabled people as the rights-holders (Albert & Hurst, 2006). Inclusion and participation are important concepts in the rights-based approach to disability and in development. However, these concepts also have various meanings in both disability and development literature. In disability studies, for example, social inclusion can mean people with disability are accepted as individuals, regardless of their impairments, in all spheres of their personal and public lives (Rohwerder, 2015). In the global South, inclusion is an evolving and sometimes ambiguous concept (Hiranandani et al., 2014). A study in India, for example, demonstrated that disability inclusion can mean the participation of disabled people in the community, but can also mean co-opting them into cheap and underpaid work in the labour market (Hiranandani et al., 2014). Inclusion is also a contested term in development studies. Pouw and Gupta (2017) explain that inclusive development is contested in four different ways: ‘The first refers to whether scholars and policymakers choose to use inclusive development… inclusive growth… or inclusive wealth…’ (p. 105). In the fourth perspective, the one that is most relevant for this chapter, inclusive development is defined as development that includes marginalized people, sectors and countries in social, political and economic processes for increased human well-being, social and environmental sustainability, and empowerment (Gupta et al., 2015, p. 546). Pouw and Gupta (2017) argue that inclusive development is about social, environmental and relational inclusiveness. It should not be interpreted as only helping the poor, but it is about empowering the poor through rights, equal opportunities and redistributive justice. Gupta et al. (2015) view inclusive development as a lens to critically examine how inequality in society can be reduced and how the marginalized can be empowered. Using this lens, inclusive development is based on creating conditions that enable marginalized people to take part in and benefit from economic growth. Inclusive development is a strategy to achieve equity and empowerment, and poverty reduction is only one of its several tools (Gupta et al., 2015).

488  Research handbook on disability policy Importantly, disability-inclusive development is also framed around the UNCRPD and more recently the Sustainable Development Goals (SDGs), which mention people with disability within five of its 17 goals (Rohwerder, 2015). With the emergence of disability inclusion in the framing of disability rights and embodied in disability-inclusive development, DPOs especially in the global South have used the UNCRPD to push their national governments for disability rights mainstreaming in development (Rohwerder, 2015). They believe that disability-inclusive development can only be achieved through disability mainstreaming in development. Mainstreaming can be a method, a policy and a tool to achieve social inclusion. It is underpinned by the principles of non-discrimination and equal opportunities. Disability mainstreaming in development requires governments in the global South to look beyond poverty reduction programmes and address the full range of issues that people with disability face, issues that cut across sectors and require cross sector responses (Stein & Stein, 2014). Disability mainstreaming in development is also about engaging people with disability in development processes (Rohwerder, 2015). Stein and Stein (2014) provide an illustration of how the indivisibility of rights for disabled people requires mainstreaming in development. To enjoy his/her right to education, a child using a wheelchair will need to have accessible public transportation, responsive health care, adequate food, a safe home, clean water and sanitation, accessible classrooms and reasonable accommodation. On the other hand, a welfare approach to disability in development in the global South, typically focused on poverty alleviation, would comprehensively fail to meet this wide range of needs. Mainstreaming disability rights across all sectors also benefits the entire community. For example, the implementation of universal design principles such as installing ramps at public places not only benefits people with disability but can also help elderly people to avoid stairs and facilitates the movement of goods (Stein & Stein, 2014). In another example, a study from Uganda shows that a developing country can implement and benefit from disability rights mainstreaming by improving access for people with disability to administrative and political representation in the government (Katsui & Kumpuvuori, 2008). Here, Uganda has successfully applied the human rights-based approach to the civil and political rights of people with disability. Ugandan politics has representation of people with disability at all levels including in the parliament. This includes 47,000 councillors with disability working in local government, half of whom are women with disability, making disability visible in Uganda’s politics (Katsui & Kumpuvuori, 2008). This insight underlines the degree to which disability is a multi-sector issue and to which disability mainstreaming in development needs to address all sectors. Focusing only on poverty reduction would not only strengthen the status quo of disability in development as a welfare issue, it would also fail to meet the diverse range of needs of disabled people. Furthermore, the demands of people with disability for meaningful participation in development signals the need for disability-inclusive development, where people with disability are not merely recipients of poverty reduction programmes but facilitated to participate in and influence development policy.

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CHALLENGES TO DISABILITY MAINSTREAMING Indonesia ratified the UNCRPD in 2011. In 2016 Indonesia enacted Law No. 8/2016 on Persons with Disability. The culmination of years of advocacy from Disabled People’s Organizations, Law No. 8/2016 on Persons with Disability is the first Indonesian disability law based on human rights, the social model of disability and a multi-sectoral approach to disability policy. The law marks significant progress in shifting from a welfare approach to a human rights-based approach to disability. The law guarantees 22 civil rights of people with disability, largely reflecting the human rights in the UNCRPD. The Indonesian government has also adopted the SDGs as targets in Indonesian development plans to ensure that no one is left behind, including people with disability, in development processes. But despite this progress, mainstreaming disability into Indonesian development policies and programmes has been very challenging. This section discusses the paradigmatic issues that have plagued Indonesia’s progress towards disability mainstreaming in development. Many of these issues are inherent in the dominant welfare approach to both disability and development in Indonesia, including the persistence of individual models of disability. This section also outlines several factors that may help explain the limitations to implementing disability rights-based regulations. The introduction of new regulations and policies aimed at the promotion of disability rights and inclusion have not necessarily translated to comprehensive implementation of those regulations and policies on the ground. Paradigmatic Issues Notwithstanding the adoption of human rights language in Indonesian legislation and policy, equivalent changes to thinking and practice is challenging for those who have traditionally worked within entrenched individual model ideas about disability. Individual models of disability are underpinned by a view of ‘personal tragedy’ that only locates disability within the individual (Oliver, 1990). These models include religious models, welfare models and medical models (Cobley, 2018). In 2011, the CRPD Ratification Law (Number 19 of 2011) replaced the traditional but demeaning term for people with disability, penyandang cacat, which means defected or impaired people, with the term penyandang disabilitas, which means people with disability. But while there has been a significant uptake in rights-based language to describe disability in the ten years since the introduction of this law, most of the government officials still use individual models to underpin their views of disability. The views expressed by the government officials interviewed in the lead author’s doctoral research focus variously on the need for rehabilitation, low expectations, limitations, lack of capacity, and impairments as the cause of marginalization (Tsaputra, 2019). These views both reflect and perpetuate an entrenched social welfare approach to disability in the Indonesian government, and particularly in the Ministry of Social Affairs (MoSA). Clearly, changes to terminology in policies and legal frameworks have yet to influence the kind of cultural change needed to substantially shift the government towards a human rights-based approach. Ableist and paternalistic views and individual models of disability remain prevalent in the everyday discourse among government officials. The full participation of people with disability will continue to be undermined while such paternalistic and deficit-focused views persist among decision-makers in Indonesia (Tsaputra, 2019).

490  Research handbook on disability policy As stated earlier, including disability in the development agenda is part of Indonesia’s response to the SDGs. However, disability-inclusive development in Indonesia has been mainly focused on welfare approaches such as poverty reduction (Tsaputra, 2019) under the banner of three strategic objectives: pro-growth; pro-job; and pro-poor (Tambunan, 2012). There are two different approaches used by the Indonesian government in implementing inclusive development. First, empowerment approaches that aim to change the conditions that produce poverty, mostly through building the capacities of the poor such as the National Program for Community Empowerment (the PNPM Peduli programme). Second, welfare approaches that aim to help the poor to meet their basic needs in the short term such as BLSM (Temporary Cash Assistance) which is an unconditional cash transfer programme to supplement the consumption of poor households in the face of price volatility; and the PKH (Family Hope Program) which is a conditional cash transfer for social assistance (Tsaputra, 2019). Together these approaches to inclusive development in Indonesia equate to increasing the participation of the poor in economic development and decreasing poverty rates. When it comes to including people with disability in the development agenda, the government has also focused primarily on welfare approaches. This can be clearly seen in the Indonesian National Medium-Term Development Plan (RPJMN 2020–2024) to achieve inclusive development and poverty reduction. Here disability is framed predominantly within the themes of social protection and social welfare with the aims of reducing poverty and boosting the economic growth. But while social welfare remains critical to meeting the basic needs of people with disability and their families in Indonesia, by failing to consult with people with disability, these programmes further reduce the agency of people with disability. The poverty reduction programmes that include people with disability are based on the individual model and fail to engage people with disability as actors in all phases from formulation to evaluation. Here the Indonesian government continues to relegate people with disability to being mere recipients of development programmes and misses the opportunity for a more expansive approach to inclusive development (Tsaputra, 2019). Implementation Issues A significant disconnect between the human rights aspirations outlined in Law No. 8/2016 on Persons with Disability, and the established bureaucratic norms, processes and agencies through which the law is implemented, has hampered progress towards disability mainstreaming in development in Indonesia (Tsaputra, 2019). The traditionally low prioritization of disability issues in the development agenda-setting process, and the poor track-record of the MoSA as the coordinating agency for disability stand out as key implementation issues (Tsaputra, 2019). Unfortunately, in the absence of more appropriate mechanisms and strategies, written commitments in the law are likely to remain largely aspirational, with little impact on thinking and practice. A lack of resources is the government’s justification for prioritizing programmes that have more immediate and visible outcomes than disability inclusion. Limited resources necessitate government programmes to be prioritized. In Indonesia this is done through national development budgeting and planning, where programmes are selected according to their strategic outcomes and national development priorities. This approach is called the Money Follow Program. The Money Follow Program prioritizes issues against limited resources and

Mainstreaming disability in Indonesian development  491 provides outcomes-based budget allocations for government programmes related to national development priorities (Ministry of National Development Planning (MoNDP), 2015). Within the framework of outcomes-based budget decision-making, disability is still mainly seen as a financial burden that needs to be addressed through social welfare programmes. Inclusive development principles and the contributions of people with disability to economic development are not factored in. Disability also attracts a low priority in budget decisions because outcomes are generally measured quantitatively (Prosser, 2018). In the case of disability in development, these measures might include how much money is spent on issues important to people with disability, compared to other groups. However, some outcomes can be hard to measure (Prosser, 2018) especially in the absence of reliable comprehensive disability data in Indonesia. This is particularly the case in applying an outcomes-based approach in the context of a human rights approach to disability. Disability-inclusive development is a rights-based approach in which people with disability have a right to participate in government decision-making that relates to them (Rohwerder, 2015). However, the participation of disabled people in State-led development can be hard to quantify. Participation is a subjective experience that cannot be reduced to the number of people present in a meeting. People with disability may participate to different extents and in non-standard ways related to their highly diverse impairment-related needs and supports (Tsaputra, 2019). Measuring this broad range of experiences requires sophisticated monitoring and qualitative data collection that must be present in policy and programme design in Indonesia. The difficulties in applying outcomes-based measurements to greater participation of people with disability may contribute to the de-prioritization of disability in State-led development. Furthermore, there are multiple competing claims for State-led development funding. Disability may not be regarded as sufficiently urgent or broad-based to warrant prioritization. Prioritizing programmes that impact more of the population may seem justifiable and realistic. However, focusing exclusively on economic and quantifiable outcomes means that non-economic but important issues, such as disability, will always be left behind. Indonesia is not the only country facing this challenge. Resource constraints are often the reason used by governments for legitimatizing their inability to fulfil the rights of their citizens (Katsui, 2008). The MoSA has been the focal point for disability policy throughout Indonesia’s history. So perhaps it was not surprising that Law No. 8/2016 on Persons with Disability also named the MoSA as the lead ministry responsible for coordinating the law’s implementation. However, for several reasons, this decision seriously undermines Indonesia’s potential to implement disability mainstreaming. Not only does the MoSA lack authority over other ministries, it has also proven to be a poor steward of national disability policy, most recently in its failure to implement the 2004–2013 National Action Plan for Disability (Irwanto et al., 2010). This is unsurprising given the historical focus of the MoSA on treating disability as only a welfare issue. Indeed, the MoSA’s appointment as the focal ministry for disability under Law No. 8 of 2016 risks strengthening the status quo of disability as a social welfare issue (Irwanto et al., 2010). Law No. 8 of 2016 takes a human rights-approach to disability, seeking to mainstream disability policy across the Indonesian State-led development programmes and policies. Actualizing this requires shared responsibility for disability issues, coordinated across a broader group of ministries (Soekanwo et al., 2015). However, the responsibility for dis-

492  Research handbook on disability policy ability policy remains firmly concentrated under the MoSA. For example, a year after the enactment of Law No. 8 of 2016, the MoSA was the only ministry to have allocated a budget towards implementing the regulations for the law (Dibley & Tsaputra, 2019). And even four years later, another study also demonstrated that 90 per cent of the disability-related budget remains under the MoSA (Hastuti et al., 2020). Law No. 8 of 2016 mandated 18 subsidiary regulations to fully implement its various parts. However, in July 2017, the Indonesian government announced that the law would have only one government regulation instead (Nursyamsi, 2017a). This single regulation, theoretically covering the broad range of sectors addressed in the law, was to be drafted and managed exclusively by the MoSA (Nursyamsi, 2017a). The government argued that this decision aligned with President Jokowi’s streamlining of policy, limiting the budget of the other ministries, and leading to faster implementation of the law (Nursyamsi, 2017b). This decision prompted harsh criticism from Indonesian disability activists, labelling it a Sapu Jagat regulation – an Indonesian metaphor to denote one-size-fits-all. They argued that a single regulation under the MoSA could never address disability as a multi-sectoral issue and was inconsistent with the spirit and substance of Law No. 8 of 2016 (Nursyamsi, 2017b). The regulation was eventually overturned (Dibley & Tsaputra, 2019). But the Indonesian government’s preference to address different rights of people with disability using a single government regulation under the MoSA clearly suggests that the Indonesian government has failed to understand the purpose and scope of Law No. 8 of 2016. Part of the reason MoSA is still viewed as the most focal point for disability policy is the absence of a point of responsibility at a higher level. Law No. 8 of 2016 also mandated the establishment of an independent National Disability Commission to oversee and monitor the implementation of the law. On 8 June 2020, Presidential Regulation No. 68 (2020) on the National Disability Commission (KND) was passed. Disability activists lobbied hard for the KND to be independent in order to fulfil its function and effectively monitor, evaluate and advocate for the realization of disability rights in Indonesia. However, the KND’s secretariat was again placed under the MoSA, which again reaffirms that the MoSA remains very much in control of disability policy and that even the mechanism to monitor the MoSA’s role in implementing the law lacks oversight. Maintaining the leadership of the MoSA, a ministry that has been approaching disability through a welfare and charity model throughout Indonesia’s history, reinforces the outdated idea that disability is a social welfare issue, rather than a multi-sectoral one (Tsaputra & Dibley, 2020). The MoSA’s appointment to lead the implementation of Law No. 8 of 2016 is inconsistent with the intended paradigm shift foreshadowed in the law itself and the law to ratify the UNCRPD. Instead, what is needed to achieve disability mainstreaming is a distributed model of responsibility and accountability across several different government ministries and agencies (Tsaputra, 2019).

PROMOTING DISABILITY MAINSTREAMING IN DEVELOPMENT THROUGH DISABILITY CITIZENSHIP To truly achieve disability mainstreaming in development beyond social welfare requires the participation and leadership of disabled people as citizens in all phases of development (CBM, 2012; UN DESA, 2011). The rights-based approach to disability and the principles of

Mainstreaming disability in Indonesian development  493 the UNCRPD provide a platform upon which all disabled people can become full and active citizens (Garland-Thomson, 2018; Sépulchre, 2017; Worm, 2012). Ideas about citizenship from both the development and disability literature can help articulate what full participation of people with disability in development might look like. This section explores the role that ‘disability citizenship’ can play in development in more depth. Some scholars in development studies raised possible links between participation in development and citizenship. Hickey and Mohan (2005, p. 238) argue that ‘participation should be conceptualized in terms of an expanded and radicalized understanding of citizenship’. This approach shifts the concept of participation towards political participation and enabling marginalized groups to have greater influence over development policy-making (Cornwall, 2000). When participation is informed by notions of citizenship it may be able to provide more spaces for citizens, particularly from marginalized groups, to participate in development (Gaventa, 2002; Hickey & Mohan, 2005). Citizenship has also been described as ‘both a set of rights and duties and the capability to act as a citizen’ (Ghosh, 2009, pp. 83–84). Capability, according to a capabilities approach, does not mean the presence of a physical or a mental ability but a practical opportunity open to any individual with an impairment (being one of his/her several characteristics) to do and to be what s/he aspires to do and to become (Bellanca et al., 2011; Harnacke, 2013). A recent application of this in the field of disability expands the capabilities approach to describe the collective capability of a group. Here capable human beings are those who have, among various skills, the ability to attribute to themselves a responsibility to contribute (Dubois & Trani, 2009). The capability for disabled people to take responsibility for their duties as citizens in this way deepens their level of participation in development and strengthens their claims to their rights as citizens. In the face of prevalent challenges to disability mainstreaming in development, there is a need to further develop these new ways of thinking about ‘disability citizenship’. The term difabel, coined by Indonesian disability activists, does just that. Coming directly from Indonesian disability movements, difabel citizenship demands comprehensive inclusion and full participation in development. As the final sections of this chapter explore, difabel citizenship highlights the significance of the concepts of rights, obligations, recognition and legitimacy. It also provides pathways for people with disability to be truly included in all areas of development and to expand the development agenda in Indonesia beyond its limited focus on social welfare. Difabel Citizenship Understanding disability citizenship in the global South cannot just draw from the concept as it originates in the global North, or normative ideas of citizenship drawn from Euro-American scholarship. Indonesian disabled people have differentiated themselves from disability citizenship in the global North by identifying themselves as difabel, a concept of citizenship complete with its own rights and obligations (Tsaputra, 2019). Difabel people are valued citizens with impairments. They are ‘able’ to make different but equally valuable contributions as those of others, and their rights include the right as Indonesian citizens to have the ‘ability’ to fulfil their national obligations. Difabel is aligned with and strengthened by the UNCRPD, which describes disabled people as human rights-holders. Both advocate for difference and impairment as valuable elements

494  Research handbook on disability policy of human diversity. Both demand that all people, regardless of disability, can fulfil their obligations and enjoy their rights. Furthermore, the idea that difabel people want to be active participants both as citizens and in development is similar to the human rights concept that understands people with disability to be equal participants in all areas of life. As discussed earlier, individual models of disability are entrenched within the Indonesian government and have traditionally been reflected in a welfare approach to disability policy. However, disabled people in Indonesia see contributing to State-led development as part of their rights and duties as citizens (Tsaputra, 2019). Their demand for an active role, including partnership with government, in all phases of development demonstrates a desire on their part for a different kind of disability citizenship. They do not want only to be the recipients of development, but rather to participate meaningfully in development and to shape its agenda. When it comes to participation in development, Indonesians with disability have consistently argued for agentic engagement with government. One that enables them to be active agents, rather than mere recipients of development programmes (Tsaputra, 2019). There is already a best practice example that demonstrates the valuable contributions of people with disability actively engaged in local development. The Desa Inklusi (disability-inclusive village) programme in Yogyakarta was initiated by a well-resourced local DPO, SIGAB. Desa Inklusi brought disabled people into the village development planning and budgeting processes to actively shape the programmes that benefit them and their community. SIGAB educated disabled people and government officials about the principles of the rights-based approach and the support disabled people required to participate in village development. This role was crucial to the programme’s success (Tsaputra, 2019). To strengthen cooperation with government institutions, SIGAB also brought together village, sub-district and district governments to identify opportunities and challenges in expanding the Desa Inklusi programme. These activities created platforms for knowledge exchange and innovative partnerships between civil society organizations and government. These kinds of partnerships are important for the effective formulation and implementation of government policies (Chaney, 2017), because they facilitate open communication between government officials and programme recipients. The key to the success of this best practice model is the role of effective local DPOs, with access to adequate resources and strong partnerships with government (Tsaputra, 2019). This has been overlooked in the literature, which largely argues that realizing the rights of people with disability in development is the responsibility of a State to its citizens (Katsui, 2008). However, this approach focuses more on the need for the inclusion of people with disability than on the mechanisms that can enable such inclusion (Coe & Wapling, 2010; Yeo & Moore, 2003). DPOs have proven instrumental in advocating for, educating about and supporting the implementation of the rights-based approach to disability in development. If the government takes its commitment to disability-inclusive development seriously, then supporting disabled people and their representative organizations as effective partners needs to be made a priority (Tsaputra, 2019). Reconceptualizing the participation of disabled people in development within the framework of difabel citizenship is an opportunity to build such partnerships, and a key to achieving disability mainstreaming in Indonesian development. This model goes beyond the global North framing of participation and equal rights. It brings together disability rights, inclusion in development and Indonesia’s unique ideology of nation building (Tsaputra, 2019). In Indonesia, citizens have the duty and ‘ability’ to fulfil their national obligations. Difabel cit-

Mainstreaming disability in Indonesian development  495 izenship is expressed in this context, as a demand to be treated as equal partners contributing to Indonesia’s development. Difabel citizenship also challenges commonly held deficit-based attitudes towards people with disability. It draws attention to the rights and obligations of disabled people, and in doing so highlights the degree of recognition and legitimacy that disabled people require to participate in development. Together these are the inseparable interconnections of disability citizenship in Indonesia (Tsaputra, 2019). Rights, Obligations, Recognition and Legitimacy Rights and obligations have a particular meaning in Indonesian civic life, indeed the two are inextricably linked. Hak dan kewajiban (rights and obligations) to society and the nation are central to Indonesian citizenship (Gibbings, 2017). This dynamic relationship between citizens and the State in Indonesia is demonstrated, among other things, by citizens voluntarily taking on responsibilities to develop society and the nation, and ‘expectations on citizens to become active agents in development’ (Jakimow, 2018, p. 150). The inseparable relationship of hak dan kewajiban of citizens in Indonesia is part of the Constitution. Articles 27 to 34 of Indonesia’s Constitution, UUD 1945, stipulate and guarantee the rights and obligations of Indonesian citizens (Yasin, 2009). Among these, Article 28C states that ‘[e]very person shall have the right to improve him/herself through collective struggle for his/her rights to develop his/her society, nation and state’. Here rights and obligations converge upon the contribution to nation building. Nation building in this context encompasses a wide range of development activities and processes. Contributing to these activities and processes in the spirit of nationalism, to make Indonesia a great and ‘developed’ country, is both a right and an obligation of citizens (Tsaputra, 2019). People with disability also expect to contribute and be recognized as valued citizens, either regardless of, or because of, their impairments. Indonesians with disability, like other Indonesians, see contributing to nation building as part of their obligations as citizens. And it is on this platform as citizens that disabled people in Indonesia demand recognition for their leadership in development, not for being recipients of development programmes. Being active agents in development is their contribution to nation building. It is both their right and their obligation (Tsaputra, 2019). Understanding these demands through the lens of difabel citizenship reveals a unique balance between rights and obligations. For Indonesian disabled people, fulfilling national obligations is not in return or in exchange for rights, but part of their realization. However, disabled people have also made it clear that recognition and legitimacy are critical to institutionalizing their difabel citizenship and ensuring they are agents in development (Tsaputra, 2019). Recognition in this context means the acceptance of people with disability by society and government as equal members of society. It also refers to their credibility and authority to represent themselves and their interests due to their knowledge and expertise of living with disability. Legitimacy is of great importance as well in relation to disability mainstreaming in development. Legitimacy in this context is defined as a mandate, conferred by government policies or regulations, that positions disabled people as an integral part of all State-led development processes (Tsaputra, 2019). This legitimacy has the potential to give disabled people the confidence to claim their right to participate in development. This is because it requires government not just to allow but

496  Research handbook on disability policy rather to institutionalize their participation. Recognition and legitimacy are intertwined, as was demonstrated in the Desa Inklusi (inclusive village) programme. The participation of disabled people in Desa Inklusi was recognized by village government officials and the village community as progressive and just. It was also legitimized in the village regulations. Here the achievement of recognition and legitimacy both depended on and enabled the successful participation of disabled people in village development. Similarly, recognition and legitimacy are critical for enabling the participation of disabled people in city, provincial and national development planning. And more broadly, recognition and legitimacy are integral to the realization of difabel citizenship, which directly calls for people with disability to be viewed as capable and contributing citizens (Tsaputra, 2019). Indonesian disabled people, in their choice to call themselves difabel, are already claiming their rights to their unique identity. They are seeking to assert this identity in conjunction with claiming their citizenship rights, including involvement in development activities and policies. In this way, difabel citizenship is a unique balance between rights and obligations, where one’s rights are realized through one’s ability to fulfil national obligations. And the actualization of this hinges on the recognition and legitimacy of disabled people’s participation in development (Tsaputra, 2019). Recognizing and valuing the different capabilities and unique contributions that disabled people could bring to development would be a real paradigm shift away from seeing disabled people merely as recipients of poverty-focused social welfare programmes. Difabel citizenship is an opportunity to harness Indonesia’s disabled citizenry as effective government partners on the path towards disability-inclusive development. Strategies to include Indonesian disabled people as agents in State-led development should therefore be based on difabel citizenship. Again, this requires a paradigm shift both conceptually and practically about disability mainstreaming in development. Without substantial change, the full inclusion of people with disability in all levels and forms of development practices enshrined in the UNCRPD risks being purely aspirational.

CONCLUSION Including disability in poverty reduction programmes requires that disabled people are seen neither as deficient nor as mere recipients of programmes. Rather, it requires disabled people to be seen as active citizens who can participate in developing those programmes. However, poverty reduction programmes for disabled people might be designed without considering the lived experience of people with disability. This is the case in Indonesia, where many disabled people living in poverty are unable to access poverty reduction programmes because the criteria for living in poverty fails to consider the circumstances faced by people with disability, including the higher cost of living (Tsaputra, 2019). Poor people with disability may still need social welfare programmes to reduce poverty. Indeed, Law No. 8 of 2016 still guarantees the rights of people with disability to such programmes. However, this does not mean that the State-led development should only focus on welfare and poverty reduction programmes for people with disability. Law No. 8 of 2016 enshrines the rights of people with disability across all sectors, paving the way for disability mainstreaming in development in Indonesia. However, a range of paradigmatic and implementation issues undermines Indonesia’s efforts to include disability in State-led development. For

Mainstreaming disability in Indonesian development  497 example, while there has been a shift towards the use of rights-based language in Law No. 8 of 2016, this appears to have had limited impact in generating changes in thinking and practice. Indeed, a deficit model of disability persists in thinking and practice and continues to position disability as a social welfare issue. This social welfare approach has been preserved structurally through appointing the MoSA as the lead agency for implementing Law No. 8 of 2016. And despite commitments to disability rights in the law, disability is never prioritized highly enough to get a significant allocation of budget resources. Together these two implementation issues, the appointment of the MoSA and the low prioritization of disability in the development agenda, are likely to prevent disability from truly becoming a multi-sectoral issue in State-led development. Indonesian disabled people are calling for difabel citizenship. Their demand for effective participation in development is a call for recognition and legitimacy from government. This would be a true paradigm shift. It will require the government to address the stigma and low expectations of disabled people and provide the accessibility and support needed for full participation. Recognizing and legitimizing difabel citizenship is an opportunity for the Indonesian government. It will facilitate disability mainstreaming in development and showcase that disabled people can be leaders in development, as required by the UNCRPD and the SDGs. This is what a shift from a welfare approach to disability to a rights-based approach to disability would look like in Indonesia. It would require concerted efforts and concrete measures from all levels of government, but it would ensure the comprehensive inclusion of disability and people with disability in development. On their own, human rights-based disability laws and terminology cannot realize disability rights and inclusion. A comprehensive paradigm shift to a human rights-based approach to disability and practical mechanisms are needed to realize the intention of these laws in thinking and practice, and ultimately achieve substantive inclusion for people with disability.

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500  Research handbook on disability policy Tambunan, T. T. H. (2012). Indonesia: Building an inclusive development model. In Z. Yunling, F. Kimura, & S. Oum (Eds.), Moving toward a new development model for East Asia: The role of domestic policy and regional cooperation (ERIA Research Project Report, No. 10, pp. 223–254). ERIA. Tsaputra, A. (2019). Disability-inclusive budgeting in Indonesia: A pathway to difabel citizenship [Doctoral dissertation, University of New South Wales]. http://unsworks.unsw.edu.au/fapi/ datastream/unsworks:63341/SOURCE02?view=true ​ ​ ​ ​ ​ ​ Tsaputra, A., & Dibley, T. (2020, August 27). The controversial dawn of the Indonesian National Disability Commission. New Mandala. https://www.newmandala.org/the-controversial-dawn-of-the ​ ​ ​ ​ ​ ​ ​ ​ ​ -indonesian-national-disability-commission/ ​ ​ ​ ​ United Nations Department of Economic and Social Affairs (UN DESA). (2011). Best practices for including persons with disabilities in all aspects of development efforts. http://www.un.org/ ​ ​ ​ ​ disabilities/documents/best_practices_publication_2011.pdf (accessed 6 September 2021). ​ ​ ​ ​ ​ ​ United Nations Department of Economic and Social Affairs (UN DESA). (2015). Toolkit on disability for Africa: Disability-inclusive development. https://www.un.org/development/desa/dspd/capacity ​ ​ ​ ​ ​ ​ ​ ​ -development.html ​ Worm, I. (2012). A human rights-based approach to disability in development: Entry points for development organisations. Deutsche Gesellschaft für Internationale Zusammenarbeit (GIZ) GmbH. https:// reliefweb.int/sites/reliefweb.int/files/resources/A_human_rights-based_approach_to_disability_in ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ _development.pdf ​ Yasin, J. (2009). Hak azasi manusia dan hak serta kewajiban warga negara dalam hukum positif Indonesia. Syiar Hukum: Jurnal Ilmu Hukum, 11(2). https://doi.org/10.29313/sh.v11i2.541 ​ ​ ​ ​ ​ ​ ​ Yeo, R., & Moore, K. (2003). Including disabled people in poverty reduction work: ‘Nothing about us, without us’. World Development, 31(3), 571–590. https://doi.org/10.1016/S0305-750X(02)00218-8 ​ ​ ​ ​ ​ ​ ​

42. Housing deficit for people with disabilities in a radically neoliberal country: Chile’s case Francisca Valdebenito-Acosta, Julio Hasbún-Mancilla and Joao Acharan-Riffo

SUBSIDIARY STATE The Chilean subsidiary state model is the framework for both the conception and the implementation of social rights in Chile, including housing policies and policies addressing people with disabilities. The subsidiarity refers to “the principle according to which a central authority should have a subsidiary function, performing only those tasks which cannot be performed effectively at a more immediate or local level” (House of Lords Select Committee on the European Communities, 1990, p. 14). However, the Chilean subsidiary state model enshrined in the 1980s dictatorship Constitution mobilizes a different definition of the term and concept. To understand the definition enshrined in the Constitution, it is necessary to link it with the Compendium of the Social Doctrine of the Catholic Church (CSDC) which is itself related to the Rerum Novarum (1891), Quadragesimo Anno (1931), and Mater y Magistra (1961) Encyclicals. This doctrine establishes that humans came before state, and that families or people should not be absorbed by the state. Its statement is to let everyone act by their own will, so long as this does not harm the common good (Nehme, 2014). In the context of CSDC, the subsidiarity principle as it informs state intervention has two aspects, the negative and the positive. The negative aspect of the subsidiarity principle establishes that the state must refrain from social responsibilities any time there is a lower level capable to do it. The positive aspect of the subsidiarity principle recognizes and emphasizes the duty of the state to act any time there are unmet social needs and when common wellbeing demands it (Aimone Gibson, 1979). The link between CSDC and the 1980s Constitution was the lawyer and academic in constitutional law from Pontifical Catholic University of Chile, Jaime Guzmán, the main ideologue of the new Augusto Pinochet dictatorship. His subsidiarity principle doctrine exaggerates the negative aspect of non-intervention of the state, minimizing the positive aspect of the common good, unlike CSDC where both principles are in balance. Subsidiarity is a useful way to fight against Marxism and hence Guzmán was not afraid to distort it if necessary: after all, any tool should be adapted to its purposes. At the same time a subsidiarity interpretation of the CSDC let it converge, with minimum practical differences, with the neoliberal policies proposed by Mansuy (2019). The anti-Marxism interpretation of the subsidiarity principle is implicitly enshrined in the 1980s Constitution, especially in its first article, which establishes that “[t]he State recognizes and protects the intermediate groups through which society is organized and structured and guarantees them adequate autonomy to fulfill their own purposes”. It is clear that the role 501

502  Research handbook on disability policy of the State is to intervene only when the private sector cannot fulfil the function. Thus, the common good was excluded from the definition. In addition, Article 19 of the Constitution stipulates that “the State and its bodies may only carry out or participate in business activities if a qualified quorum law authorizes it”1, thus eliminating the role of the State as an entrepreneur and promoter of investments. The impact of the 1980s Constitution and its mobilization of the negative definition of subsidiarity was that the state initiated processes to strengthen the role of the market and to privatize public goods and services, and introduced a neoliberal “subsidiary” state model of which there was no precedent at the international level (Foxley, 1982). In this social and political context, it became established that the state should not intervene in the economic sectors that show efficient results, but should control the institutions that regulate the market, or supply the market, when the market fails (Petersen, 2015). State provision of free social services such as health, education and housing were abandoned, expanding the powers of the market. In this context, the poorest members of society were greatly impacted by a lack of housing supply. Linked to the broader role of the market and the shrinking of the state, the subsidy was installed as a central element of public housing policies during the dictatorship, which has been maintained by following governments with some variations. Social housing went from being a right to a part of the real estate market (Atria et al., 2013). In this context, we analyse the historical conditions that have impacted access to housing for people with disabilities, as well as the institutional framework in which the Convention on the Rights of Persons with Disabilities (CRPD) operates in Chile.

STATE OF CHILE: THE LONG ROAD FOR PEOPLE WITH DISABILITIES TO REACH THE PUBLIC AGENDA (1925‒2021) In Chile, the welfare state (1929–1973) was established following a deep crisis of political representation that happened prior to the 1925 Constitution and the collapse of the mono-producer economic system. Chile’s welfare state was oriented towards addressing social justice problems that had afflicted the country since the colonial administration. These included the latifundium,2 the control of the means of production and social rights. The public agenda was accordingly dominated by the Agrarian Reform, the nationalization of copper and the vindication of social rights of the population in education, health and housing. During this period, key institutions for the country’s development were designed and implemented, and for the first time since the beginning of the Republic, the state focused on covering the social welfare needs of the working classes. From the 1940s to 1960, governments progressively concentrated on the expansion of different areas of social welfare, including education, health and housing. People with disabilities in this period may have indirectly benefited from social policies in general and housing policies in particular. However, as a social actor they remained, with few exceptions, invisible from the legislative agenda and public action. This is shown in the only piece of legislation in the country that refers to people with disabilities during this period: Law No. 16,383 (1969), which authorized the importation of vehicles equipped for people with disabilities with favourable importation taxes/tariffs.

Housing deficit for people with disabilities in a radically neoliberal country  503 The coup d’état of September 1973, which established a long civil-military dictatorship (1973–1990), halted the social and economic model of the welfare state and the visibility of people with disabilities in the public sphere. During this period, the Military Board headed by Augusto Pinochet captured political power, establishing an authoritarian government, closing the National Congress, outlawing political parties, and establishing a state of siege throughout the national territory. During the dictatorship, Chile gradually configured a state that was conceived as a liberal welfare regime, where the market played the leading role in the provision of public goods and services. In this type of regime, public investment in social spending is high and continuously increasing, but in the form of subsidies to the private sector and targeted spending. At the same time a logic of “co-responsibility” is applied which seeks to make people individually responsible for their access to social benefits (Martínez Franzoni, 2005). There were two significant milestones within this configuration process. The first was the influence on the ruling elite of the economic thought of Friedrich A. Hayek, Milton Friedman and James M. Buchanan. This allowed the implementation of the neoliberal theoretical agenda in Chile, a process of radical economic-political transformation to guarantee the primacy of the market over the role of the state as guarantor of rights (Alemparte, 2021). The second milestone was the promulgation of a new Constitution in 1980 under the model of “protected democracy”. This created various mechanisms to limit the margin of political action in democracy and to perpetuate the neoliberal-conservative political-economic model of the dictatorship, consecrating the subsidiary role of the state. In this new neoliberal era, an interesting paradox for people with disabilities occurred. On the one hand, they became visible in the public space due to the Telethon campaign, explained below. On the other hand, a setback of social policies occurred, due to the debt crisis of the 1980s which constituted the “lost decade” of Latin America. During the “lost decade”, the region’s per capita Gross Domestic Product (GDP) fell from 112% to 98% of the world average, and from 34% to 26% of that of developed countries (Bértola and Ocampo, 2012). After the financial and economic collapse of 1982, Chile’s fiscal policy experienced a reversal in its performance over the previous period, from a major surplus in 1981 to a deficit of 3.4% of GDP in 1983–85 (Ffrench-Davis, 2001). In the face of this, government policy was based on the trickle-down theory, popularized by President Reagan in the United States of America. Trickle-down theory assumes that reducing taxes on companies and the rich in society encourages short-term business investment and benefits society over the long term. This meant a strong bias in favour of high-income sectors was demonstrated through generous subsidies to large enterprises, and a slump in investment in social policies that responded to the growing social demands of impoverished post-crisis majorities occurred. Inspired by the Jerry Lewis model in the United States, the Telethon campaign emerged on the eve of the establishment of the 1980 Constitution. The Chilean version of Telethon promoted fundraising for the expansion of the services provided by the Instituto Nacional de Rehabilitación Infantil (Children’s Rehabilitation Institute). This was done by combining the Christian logic of charity with private initiative, through personal and corporative donations regulated by the law of Municipal Taxes No. 3,063 from 1979. Companies participated in advertising campaigns, donating part of the profits obtained by the selling of their products (Ferrante, 2017). This 27-hour national television broadcast gave high visibility to children with physical disabilities, as well as to the rehabilitation model, which was unprecedented in the country. This model seeks to enhance the social inclusion of children and youth using

504  Research handbook on disability policy a bio-psycho-social approach to disabilities, based on the Expanded Chronic Care Model and using the International Classification of Functioning framework developed by the World Health Organization (WHO 1980; 2001). As a result of the campaign, children up to the age of 18 were able to access a rehabilitation programme that was outside the public health system, fundraised for by a public audience sensitized to life stories of children and their families overcoming adversity. The successive Telethon campaigns during the 1980s cemented the socialization of an approach that conceived of disability as a personal medical tragedy which required medical-social intervention, to ensure the functional adaptation to society of people with disabilities (Oliver & Barnes, 2012). However, excluded from this public empathy were people with disabilities acquired in adulthood as well as those with cognitive or psychiatric disabilities, who consequently remained stigmatized or else invisibilized. Separating the rehabilitation process from other spheres of development and wellbeing, for example access to housing, education and employment, is one of the greatest risks of this paradox of high visibility of disabilities alongside the regression of social rights. This period clearly exposed the limitations of the rehabilitation model, namely that it fails to view functionality as only one dimension amongst others in achieving a full life. In the realm of housing, we see how in this period the neoliberal logic established that: (i) the state did not build or contract public housing, and private companies were in charge of the building process; (ii) the role of the state was to subsidize housing through market mechanisms to ensure both the desired profitability of the housing companies and the satisfaction of consumers; and (iii) social housing was considered a commodity to be acquired with effort (MINVU, 1975; Hidalgo, 2016). Under this logic, most people with disabilities who had restricted access to healthcare, education and employment were excluded from access to social housing because, as a result of accumulated inequalities, they remained outside the formal labour market. They therefore could not access mortgage credit, an essential condition to qualify for housing, still current in Chile. Finally, there were only two laws issued in this period that referred to people with disabilities: Law No. 18,600 (1987) which established rules on the “mentally deficient”; and Law No. 18.700 (1988) originating from Decree No. 1,667 which granted blind and illiterate people the right to vote (Peranchiguay, 2021). In summary, during the period 1925 to 1990, despite two separate constitutions (1925 and 1980) being introduced, only three laws recognized people with disabilities as social actors. The end of the dictatorship (1990) and the return to a democratic regime brought hope that the state would address the profound inequities of the neoliberal reforms of the 1980s. It was also hoped that the state would respond to the demands of groups that had been invisible during the long previous decades, including women, children, Indigenous people, sexual minorities and people with disabilities. A first sign that these hopes might be addressed was the speech of the President of the Republic, Patricio Aylwin, to the country on 21 May 1992 (Presidential Message to Congress, 1992), in which he expressed: “It is necessary to strive for a progressive integration into society of people with disabilities.” Aylwin’s government introduced the first inter-sectoral law establishing norms for the full social integration of people with disabilities through Law No. 19,284, published on 5 January 1994. This law also jointly created the National Fund for Disabilities (FONADIS), whose mission was to make effective the rights of people with

Housing deficit for people with disabilities in a radically neoliberal country  505 disabilities, facilitating their inclusion in the social protection system and promoting equal opportunities and non-discrimination, through coordinated, efficient, participatory and ethical management. During this period Supreme Decree No. 47 of 1992 was also issued, which established the new text of the general ordinance of the General Urbanism and Construction Law. This decree recognized for the first time the need for preferential action, granting points in the housing application to families comprised of at least one person with disabilities. These advances were more declarative than concrete. The newly introduced disabilities recognition system was difficult to achieve because of its highly bureaucratic and centralized operation model and the lack of strong public institutions. Furthermore, the additional score in the application for social housing did not exempt families from the banking requirements, nor did it ensure houses with adaptations to facilitate disability access. Moreover, modifications to public buildings were limited to the interest and/or feasibility of state organizations. During the following years, progress continued to be slow as governments adjusted the laws that negatively and inhumanely affected people with disabilities. For example, people with disabilities were granted the right to marry. In the governments of Frei Ruiz-Tagle (1994–2000) and Ricardo Lagos (2000–2006), there were more than 34 laws that expanded the possibilities for participation in social life for people with disabilities strengthening civil rights. Michelle Bachelet’s first government (2006–2010) inaugurated, for the first time in Chile, a human rights approach, from a logic of recognizing discrimination and exclusion of social groups with special characteristics, needs or ways of life: The cohesive Chile we want to build also involves recognizing that there are many other inequalities and exclusions that we have to take care of: the discrimination suffered by the disabled, immigrants, sexual minorities, the poorest, the oldest. Many times, because of our prejudices, the country wastes the talent of so many people. (Presidential Message to Congress, 2006)

Consistent with this discourse, during Bachelet’s government comprehensive progress was made in the disability agenda. This included: Law No. 20,146 (2007) which established special rules for appeals in cases related to disabilities; Decree 201 (2008) which ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and its optional protocol; and Law No. 20,422 (2010) which established rules on equal opportunities and the social inclusion of people with disabilities. The following government of Sebastián Piñera (2010–2014), the second government of Michelle Bachelet (2014–2018) and the second government of Sebastián Piñera (2018–2022) have improved rights in Law No. 20,422, repositioning people with disabilities as equal and inevitable rights holders. In terms of housing, the greatest progress after signing the CRPD was the enactment of Decree No. 50 (2016) which amended the Supreme Decree No. 47 on housing and urbanism of 1992. The Decree No. 50 updated rules on accessibility to promote universal design in cities, public spaces, means of transport and buildings. As we have seen, it was a long road for people with disabilities to be included in the public agenda of the state of Chile. People with disabilities were an infringed and vulnerable group. They endured decades of invisibility under a strict neoliberal model, with exclusions and restrictions in general social policies regarding their participation in health, education, employment and politics.

506  Research handbook on disability policy This chapter, written a decade after the adoption of the CRPD, focuses on the results obtained in terms of access to and quality of housing for people with disabilities. The hypothesis for the research was that the historical dynamics of inequality, when applied to housing, have not been substantially modified in Chile. We argue that addressing the historical gap in housing requires the commitment of sustained public investment, which is likely to be unfeasible in a middle-income state. This argument is clear when analysing the qualitative and quantitative deficit of housing for people with disabilities.

DATA AND METHODS The National Socioeconomic Characterization Survey (Encuesta de Caracterización Socioeconómica Nacional, CASEN) conducted by the Ministry of Social Development and Family, is one of the main public instruments used to investigate the living standards and quality of life of the population. It is a multipurpose survey, which collects information on Education, Work, Income, Health, Identities, Networks and Participation, and Housing and Environment. In some of these areas, the survey captures data on each of the members of the surveyed household. In this way, its units of analysis are both individuals and households, and it is possible to analyse for each of these levels. The data analysed in this study were from the surveys conducted in 2000, 2003, 2006, 2009, 2011, 2013, 2015 and 2017. From 2000, questions on the measurement of disabilities were introduced. The results presented throughout are at the household level, using the regional expansion factor. In particular, the evolution of the indicators associated with the quantitative and qualitative housing deficit were observed during the indicated period. These housing measures are presented in a disaggregated manner according to the presence or absence of a member with disabilities in the household. The results indicate whether there were significant differences between both groups in the 2017 measurement, by applying a multiple comparisons test with a Bonferroni adjustment. This type of statistical test allows for comparing the means or proportions of the f levels of a factor, modifying the significance level depending on the number of comparisons to be made. This test was used to evaluate whether there were significant differences in response between groups, with a significance level of 0.05. The main advantage of incorporating the Bonferroni adjustment when comparing proportions is that it eliminates the problem of making multiple comparisons. We refer to “quantitative social housing deficit” as the estimate of additional housing that needs to be built to meet the needs of the population (BCN, 2020). Currently, Chile’s national instrument for socioeconomic measurement (CASEN, 2014, 2016) calculates this deficit based on three elements: the amount of unrecoverable housing; lodgers in shared households; and overcrowded units by secondary families. The “qualitative deficit”, however, estimates the number of people who have access to an independent housing regime, but have shortcomings in their housing needs, related to (a) the poor material quality of the housing and (b) the lack of basic services. In addition, it analyses the minimum acceptable standards needed for housing to fulfil its function in relation to the life of the family that inhabits it, which may vary as the country reaches higher levels of development (DIPRES, 2006). CASEN currently calculates this deficit based on two composed indicators: the overall housing quality index (type of housing, materiality, and access to basic services); and the overcrowding index (number of

Housing deficit for people with disabilities in a radically neoliberal country  507 people in the household, number of bedrooms in the dwelling and number of households in the dwelling). Data Limitations CASEN household survey limitations for estimating the prevalence of disabilities must be considered. There is evidence suggesting that the definitions of disabilities that guide the survey, the terminology used and the instructions given (or not) to respondents may introduce various biases that contribute to underreporting (Pettinicchio & Maroto, 2021). Some questions have been worded using potentially stigmatizing language, for example: Does any member of the household have any of the following impairments? This question inquired about hearing, vision, physical and mental “impairments” among others, in a multiple-choice question modality which allowed for up to three “impairments” per member of the household. As of 2006, the phrasing of the question was changed by replacing the expression “impairments” with “permanent and/or long-term conditions”, which has been maintained henceforth. Although rephrased, the list of difficulties has remained constant. It must be considered that when it comes to surveying deafness or blindness, the questions ask about difficulties in hearing or vision, even when using hearing aids or glasses, assuming a more restricted definition of disabilities, which recognizes it only when those difficulties are not mitigated by using assistive devices. This approach may be associated with an underreporting of the population with some degree of difficulty in hearing or vision. Despite this, the change in the formulation of the question (from “impairments” to “permanent conditions”) was accompanied by an increase in the reporting of disabilities. In the latest version of the survey, reporting grew by 6.08% compared to the 2000 measurement (from 5.22% to 11.3%). This suggests that the new wording may be having some effect in reducing the underreporting of disabilities. This has implications for the comparability of the data before and after the terminology change. In addition, over that 17-year period (from 2000 to 2017), the measurements of quantitative and qualitative deficits were also modified. In particular, the CASEN survey questions aimed at calculating materiality and overall housing quality indexes changed in ways that make comparison difficult. The publicly available databases only present these indicators as of 2009. Considering the complications for comparability associated with the wording changes described above, we only analysed the information collected as of 2009. This allowed us to deal with the methodological difficulties and potential measurement biases resulting from the limitations. For these reasons, the series presented in graphs 1 and 2 start from 2009, using the question to quantify disabilities. As of 2017, following the Washington Group’s recommendations, a new set of questions was incorporated seeking to quantify the proportion of the population with functional difficulties performing daily activities (such as seeing even when wearing glasses, hearing even when using hearing aids, walking, remembering and communicating). These questions were introduced to estimate the proportion of people aged five years or older with disabilities, inquiring into the level of difficulty they experience in performing such tasks. This variable was used when observing the gaps in income poverty and multidimensional poverty between households with or without members with disabilities.

508  Research handbook on disability policy

RESULTS Gaps in the Quantitative and Qualitative Housing Deficit by Presence of Disabilities Figure 42.1 shows the main indicators for estimating the quantitative housing deficit at the household level, according to the presence or absence of members with disabilities in the household: in particular, the percentage of unrecoverable housing according to the Global Housing Quality Index, and the situations of external and internal lodgers. The percentage of unrecoverable housing was not significantly different between households with and without members with disabilities. This indicator has maintained a relatively stable trend throughout the period observed. However, when it comes to internal and external lodgers, percentage differences are observed to be significant for the 2017 measurements. Regarding internal lodgers, the housing deficit is 20.4% in households with members with disabilities, which is 6.4% more than households without members with disabilities. Furthermore, regarding external lodgers, there is a higher prevalence of housing deficit among households without members with disabilities (8.8%) compared to households with members with disabilities (7.2%).

Source: CASEN Series (2009, 2011, 2013, 2015, 2017).

Figure 42.1

Indicators for estimating the quantitative housing deficit at the household level

The image corresponds to a vertical bar graph that represents the percentage of households with a quantitative housing deficit, comparing the prevalence of indicators in households with and without members with disabilities. Regarding the qualitative deficit of housing, Figure 42.2 shows that, among households with members with disabilities, 12.3% have a home with a “recoverable” state of deterioration, which could be addressed with a housing improvement policy. In addition, this situation has

Housing deficit for people with disabilities in a radically neoliberal country  509 been decreasing in prevalence during the period observed, narrowing the gap between households with and without members with disabilities. Likewise, poor sanitation affects 7.2% of households with members with disabilities, which is 1% higher than households without members with disabilities, which is statistically significant. Finally, regarding the presence of overcrowding in housing, this problem is more prevalent in households without members with disabilities, with a difference of 0.6% between the two types of households.

Source: CASEN Series (2009, 2011, 2013, 2015, 2017).

Figure 42.2

Indicators for estimating the qualitative housing deficit at the household level

Gaps in the Housing and Environment Dimension of the Multidimensional Poverty Measurement In a deeper analysis of the 2017 results, we analysed significant differences between families with and without members with disabilities in terms of poverty prevalence and housing deprivation. In this case, the short set of new Washington Group questions was analysed to quantify disabilities in Chile. Our results suggest that the main gap among people with disabilities is in multidimensional poverty, but not in income poverty, with important inequalities observed in the material conditions of housing habitability. The measurement of income poverty is made based on household disposable income, which is all monetary and in-kind items received, with annual or greater frequency, considering both autonomous income and direct transfers received by the household. It further includes the value of services imputed to the use of housing (CEPAL, 2018; MDSF, 2017). Multidimensional poverty corresponds to an aggregate index of five dimensions (education, health, work and social security, housing and environment, and social networks and cohesion), identifying those households facing deprivations in a series of dichotomous indicators related to these dimensions (CASEN, 2017; MDSF, 2017).

510  Research handbook on disability policy Table 42.1

Income and multidimensional poverty at the household level by presence or absence of members with disabilities 2017

Poverty Not poor (Income) Poor (Income) Not poor (Multidimensional) Poor (Multidimensional)

Households without disabilities 91.79939 8.20061 80.09456* 19.90544

Households with disabilities 92.038307 7.961693 75.183499 24.816501*

Note: *p, .1, **p, .05, ***p, .01. Source: Authors’ elaboration based on CASEN (2017).

Table 42.1 presents the results (at the household level) of income and multidimensional poverty disaggregated according to the presence of any member with disabilities in the household. Using the multiple proportions comparison test with the Bonferroni adjustment described above, there were no significant differences between the proportion of people without disabilities who are in income poverty (8.2%) and the proportion of people with disabilities who are in income poverty (8.0%). Differences emerge when it comes to multidimensional poverty. While 19.9% of the population aged five years or older who do not have disabilities are in this type of poverty, this figure rises significantly to 24.8% in the case of people with disabilities. The housing and environment dimension in the measurement of multidimensional poverty is composed of three indicators: habitability; basic services; and environment. In Table 42.2, with the sole exception of the overcrowding deprivation indicator, people with disabilities have problems in terms of habitability, housing conditions, basic services, quality of surroundings, accessibility and environment, which are significantly higher compared with households without disabilities, with differences that reach 7.2% in terms of housing conditions or 4.3% in terms of habitability.

DISCUSSION Households with people with disabilities have a higher percentage of lodgers than households without the presence of people with disabilities (quantitative deficit) during the decade following the ratification of the CRPD. Hosting lodgers can be seen as a rational survival strategy for families of the lowest socioeconomic levels, since cohabitation is a way to maximize resources (Araos, 2008). Access to commercial mortgage credit to acquire the most affordable housing is unfeasible for families in the lowest 60% income bracket,3 since according to CASEN 2017 (División Observatorio Social, 2020), they have an average monthly autonomous income less than or equal to $389,197 ($462 USD). Therefore, a percentage of people with disabilities are left without any real housing access policy. State policies that have been designed for people with disabilities to access housing are weak and limited in coverage. Two decrees have implemented affirmative action for people with disabilities in terms of access to housing. First, the Decree No. 41 of 1995 of the Ministry of Housing and Urbanism (MINVU) granted an additional score to households with members with disabilities living there before the signing of the CRPD. Second, the Decree No. 49 of 2012 of the same Ministry created a Subsidy for Vulnerable Groups aimed at 20% of the poorest households, which allows the option of a home without mortgage debt and offers

Housing deficit for people with disabilities in a radically neoliberal country  511 Table 42.2 Indicator Overcrowded household

Gap in the housing and environment dimension of multidimensional poverty at the household level by presence or absence of members with disabilities 2017 Total Household without disabilities 6.5 6.6*

13.8 12.3 Household lacking in housing conditions Household lacking 18.8 17.4 in habitability Household lacking 6.6 6.5 basic services

Household Description with disabilities The number of people in the household per 6.2 exclusive-use bedroom is greater than or equal to 2.5. Household resides in substandard housing or 19.8* housing with dilapidated walls, roofs or floors. 24.2* 7.3*

Home lacking quality of surroundings

10.2 9.4

13.3*

Home lacking in accessibility

5.8

5.1

8.3*

Home lacking in environment

4.6

4.4

5.3*

Household with overcrowding or lacking in housing condition. Reside in a dwelling without basic sanitation services (WC, tap inside the dwelling and water according to urban or rural standards). Lack of access to the following basic facilities within walking distance of homes: public transportation services (bus stop, station); educational centres (school or kindergarten); or health centres (primary care or hospitals). Households with one or more employed members, who lack any of the basic urban infrastructure and equipment mentioned above and in which these members spend an average of one hour or more daily to reach their main place of work (using public transportation or non-motorized transportation). Exposure to at least two environment pollution problems in the household member’s local area within the last 12 months.

Note: *p, .1, **p, .05, ***p, .01. Source: Authors’ elaboration based on CASEN (2017).

a complementary compensation to families with presence of people with disabilities to adjust the housing to the requirements of the household. The Subsidy for Vulnerable Groups, created post-CRPD during the years of implementation 2011–2015, has had a low application rate of people with disabilities: 2.54% over the total number of applications, and 1.68% over the total number of applications of households with the presence of people with disabilities (Ferrada et al., 2016). Reviewing these results, it is evident there is still a need to reduce the gap in access to housing for people with disabilities. Perhaps the most evident gap is that for 80% of the population, access to housing is linked to the commercial evaluation of a mortgage loan for the family group, and/or prior savings. Further research is needed to investigate the subjective reasons and barriers behind the low rate of application for housing subsidies from households with people with disabilities, even in the lowest socioeconomic brackets. Regarding housing quality (qualitative deficit), two of its component indexes – access to basic services and materiality – have been more unfavourable to households with people with disabilities over the last decade. Sanitation results show that households with people with disabilities in rural areas have a higher health risk, this being understood as: non-existent,

512  Research handbook on disability policy insufficient or inappropriately managed water; and sanitation services that expose the population to preventable risks to their health (WHO, 2020). Sanitation is a critical factor, especially in Chile, because access to drinking water in rural areas is still under a state of precarious regulation (Espinoza Chacoff, 2012). Specifically, water supply in semi-concentrated and dispersed rural areas is not regulated by the General Law of Sanitation Services, which means that the provision of drinking water in rural areas is not a standard public service. The situation is aggravated by the prolonged drought affecting Chile (Garreaud et al., 2020) and a legal vacuum from the 1980 Neoliberal Constitution that explicitly enshrines private property over water use rights (Centro de Derecho y Gestión de Agua, 2021). The other dimension of the qualitative deficit refers to the materiality of housing in homes with people with disabilities, despite being recoverable. Once again there is a mechanism of “Subsidy for the improvement of housing” with significant access restrictions and low coverage, due to a targeting criterion linked to the subsidiary conception of the state. Finally, the results show a close relationship between the multidimensional poverty of households with people with disabilities and the housing and environment dimensions that were sustained in the decade following the CRPD. This relationship between multidimensional poverty and housing is mediated by a state that has neither the resources nor the legal tools to address in meaningful ways the access and quality of housing for households with people with disabilities. The lack of significant progress in this matter during the last decade turns the reflection to the “disabling” nature of material and social environments that do not facilitate housing access for people with disabilities (Cappa et al., 2015; Loeb, 2013). Further, our analysis demonstrates how complex it is for states to break the strong association between multidimensional poverty and disabilities (Mitra et al., 2013; Pinilla-Roncancio, 2017).

CONCLUSION The subsidiary state in Chile hinders the effective implementation of public policies that aim to transform the structural inequality of people with disabilities and their families. A decade after the country’s affiliation commitment to the CRPD, this research shows that there is a persistent gap in access and quality of housing for people with disabilities. Following its CRPD commitment, Chile’s policies for improving access to and the quality of social housing have failed to narrow the gap that remains between people with and without disabilities. The social demands of people with disabilities continue to be unmet. The relationship between housing, multidimensional poverty and a human rights approach is clear and unavoidable, because people with disabilities see their lives restricted or enhanced by the opportunities offered by society. However, the potential assessment of the implementation of policies following the CRPD is positive. For the first time, due to the gradual incorporation of disabilities variables in national measurement systems, it is now possible to quantitatively and qualitatively measure the gaps of inequality experienced by people with disabilities and their families. Further, from empirical data it is possible to inform the public agenda with respect to the gaps in human rights of people with disabilities. The link between human rights, multidimensional poverty and the action required in public policies to close the gaps is diluted by the subsidiary state the Chilean way, which as we

Housing deficit for people with disabilities in a radically neoliberal country  513 have seen, refrains from acting. From a neoliberal logic, the social optimum is based on an economic cost/benefit calculation that excludes the variables associated with welfare, since the first interest of the state is to allow the creation of a housing market, rather than to guarantee a right to it: we have moved “from welfare state to wealth-fare” (Allon & Parker, 2016, p. 71). The operation of subsidies competitively awarded to families – both for access to new units and for improving the quality of already built housing – has not managed to close the gap in the housing component of multidimensional poverty. This situation points to the contradiction in state discourse, which refers to the importance of human rights, while simultaneously outsourcing the provision of housing to private enterprises, which are motivated by profit rather than upholding human rights. Chile’s status as a middle-income country with a deep commitment to neoliberalism continues to constitute a barrier to a full and socially supported life for people with disabilities.

NOTES 1.

2.

3.

Start of endnote. The Qualified Quorum Act is very difficult to achieve within the framework of the 1980 Constitution since it establishes an electoral system with a binominal mechanism characterized by a distribution of seats being carried out one to the first majority and the other to the second majority, generating a “tie” between the two largest coalitions in terms of their representation. Critics have pointed out that this (i) subrepresented the most voted coalition, (ii) over-represented the coalition that obtained the second majority, and (iii) did not give representation to the other coalitions. This situation made it difficult to make legal or institutional changes, in those key aspects governed by the laws of qualified quorums (Siavelis, 2005). End of endnote. Start of endnote. The latifundium was a socioeconomic system of agricultural production and source of political power constituted by the mutual and dependent economies of landowners and peasants. Its structure was hierarchical and coercive, like the European manorial system. The significant difference between the latifundium system and European feudalism lies in the fact that peasants had no legal or customary ties and/or claims to land ownership (Bellisario, 2013). End of endnote. Start of endnote. Twenty per cent of the most vulnerable households had an average monthly autonoomous income of $219,000, 21% to 40% of the most vulnerable households had an average monthly autonomous income of $313,519, 41% to 60% of the most vulnerable households had an average monthly autonomous income of $389,197, 61% to 80% of the households had an average monthly autonomous income of $513,905, the 20% of households with the highest income had an average monthly autonomous income of $1,352,910. End of endnote.

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Chilean Laws and Legal Files Concerning Disability Decreto 50 No del Ministerio de Vivienda y Urbanismo Decreto 83 No del Ministerio de Educación Decreto con fuerza de Ley No 1 Decreto con fuerza de Ley No 2 Decreto de Ley No 64 Decreto de Ley No 65 Decreto exento No 86 Decreto exento No 87

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43. Inclusion of students with visual impairment in Indian higher education: a critical inquiry from a human rights perspective Aneesh Peter and Catherine Elisa John

INTRODUCTION The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) acknowledges the right to education as one of the most significant basic human rights for all people with disability. Article 24 of the CRPD recognizes the right to equity, access, participation, and inclusion in the education system at all levels and lifelong learning (United Nations [UN], 2006). Nonetheless, access and inclusion to education, particularly higher education, is still unattainable for many people with disability in the countries of the Global South including India (Kunnath & Mathew, 2019). In India among the 37.4 million students enrolled in higher education, with a Gross Enrolment Ratio (GER) of 26.3%, only 0.23% accounts for people with disability (Ministry of Human Resource Development [MHRD], 2019). This adds a very small share to the 3% reservation ensured for people with disability in the public institutions. Though the GER increased significantly over the last decade this increased enrolment is not reflected among people with disability. Various social, political, economic, cultural, and environmental factors, directly and indirectly, have caused this systematic exclusion of persons with disability (Kunnath & Mathew, 2019; Jameel, 2011; Dawn, 2021). Among these causes the lack of comprehensive disability policies and schemes is a prominent one (Dawn, 2016). Thus, for people with disability, the right to education scarcely gets transferred to access and participation in higher education. Delving deeper into the above issues, this chapter first traces the transition of disability policies in India and its impact on the access and participation of people with disability in higher education. Second, the chapter analyses two major policies, the Higher Education for Persons with Special Needs (HEPSN) scheme and the Rights of Persons with Disabilities (RPWD) Act 2016, through a human rights perspective and explores its influence on the subjective lived experiences of students with visual impairment in the Higher Education Institutions (HEI) in Kerala, India. The chapter highlights how the ontological presence of impairment interacts with other social categories of the person and how these intersections influence the persons’ access and participation in higher education.

DISABILITY POLICIES IN INDIA: TRACING THE TRANSITION The ontological understanding of disability in every society is redefined over time. These transitioning understandings of disability determine how people with disability are treated and pol517

518  Research handbook on disability policy icies are framed. It is imperative to address the conceptualizations of disability, as this could contribute to better opportunities and realization of human rights for people with disability. In India, the initial explanatory models of disability stem from the religious models that equate disability to ‘sin’, ‘possession of an evil spirit’, or ‘a curse or punishment from a supreme power’ (Miles, 2010; Pal, 2021). Newer conceptualizations emanated from the medical, social, and ecological models. These varied conceptualizations of disability coexisted and contributed differently to disability policies in India. Until the 1990s the rights of people with disability did not gain a space in the disability discourse and were confined to a cycle of invisibility (Sight Saver, 2011). The Indian Lunacy Act 1912, later superseded by the Mental Health Act 1987, was the only exception. However, these Acts undermined the rights of people with disability and considered them as ‘an incompetent person in need of treatment’ (Indian Psychiatric Society, 1987; Akhtar & Verma, 1990; Math, Murthy, & Chandrashekar, 2011). In the absence of specific policies and legislations, any concerns about people with disability, especially physical disability, were largely dealt with under Articles 14 (Right to equality) and 21 (Right to life) of the Indian Constitution. Disability was also a recurrent issue across a range of legislative domains including marriage, divorce, adoption, guardianship, property, and criminology (Bakshi, 2015). Three landmark developments which increased the visibility of disability in India’s public domain are: (i) the rise of the disability rights movement; (ii) the introduction of the Universal Declaration of Human Rights, a United Nations initiative towards safeguarding human rights; and (iii) the Asian and Pacific Decade of Persons with Disabilities (1993–2002). The emphasis on medical rehabilitation was gradually replaced by social rehabilitation which suggests that people are disabled not by their impairment but by the barriers in the society (Cigman, 2010; Oliver, 2013). Policy definitions of disability transitioned from a ‘problem centred’, ‘pathology oriented’ to a ‘human rights framework’ accompanied by a paradigm shift from ‘charity’ to a ‘rights-based’ approach. Following these advancements, India adopted a more promotive, preventive, curative, and rehabilitative approach to disability. At the policy level, a cluster of legislations such as the Rehabilitation Council of India Act (1992), Persons with Disabilities (PWD) (Equal Opportunities, Protection of Rights and Full Participation) Act (1995), and National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act (1999) were enacted. In theory, these laws, particularly the PWD Act (1995) marked the beginning of a rights-based approach in disability policies in India. It was the first-ever Act to recognize the economic and political rights of people with disability. It focused on both the preventive and promotional aspects of rehabilitation and included the domains of education, employment, prevention and early detection, non-discrimination, research and manpower development, social security, and affirmative action in its purview (Ministry of Law, Justice and Company Affairs, 1995). However, as disability rights gained a growing maturity within the human rights debate (Massie, 2005), many disability rights activists in India recognized that the PWD Act was merely a social welfare legislation. They questioned the partly essentialist stand taken in the Act and its failure to ensure substantive equality for people with disability compared with their non-disabled counterparts (Kothari, 2011).

Inclusion of students with visual impairment in Indian higher education  519 Emergence of the United Nations Convention on the Rights of Persons with Disabilities Similar criticisms about the limits of welfare-oriented policies were raised in the United Nations. There was consensus internationally among disability rights activists and organizations that ‘the architecture of the human rights regime despite its universal application to persons with disabilities and clear prohibitions of discrimination based on disability had proved ineffective in ensuring equal rights for persons with disabilities in practice’ (Quinn & Degener, 2002, as cited in Kothari, 2012, pp. 178‒179). A core reason for this was that most of the existing initiatives were only soft law instruments, whereas we needed more binding international instruments which could formulate a normative framework to ensure the human rights of people with disability and could be a substantive framework to ensure the application of these rights through domestic laws and policies (Kayess & French, 2008). The United Nations Convention on the Rights of Persons with Disabilities (2006) was an initial step towards this. The UNCRPD is a universal and non-derogable human rights instrument framed on the principles of autonomy and self-determination, equality, and non-discrimination. It shifted disability from a welfare regime to a universal and inclusive paradigm, compatible with the rights regime (Lawson & Beckett, 2021). This also prompted worldwide law reform in the field of disability rights. India both signed and ratified the convention in 2007. The ratification of the UNCRPD initiated discussions around how the framework and implementation of the Indian disability policies, specifically the PWD Act (1995), could be modified to have an expansive interpretation based on the human rights principles of UNCRPD. Kothari (2011) suggested that by adopting the approach of the UNCRPD India could attain a powerful novel paradigm for equality law, with disability rights at the cutting edge. What the UNCRPD Meant for India As a signatory to the UNCRPD, India was mandated to identify and eliminate the barriers in its national laws and set out substantial amendments to adhere to the Convention. Changes were initiated in this regard and the PWD Act (1995) was replaced by the Rights of Persons with Disability (RPWD) Act in 2016. It introduced a 5% seat reservation for persons with disability in every HEI and initiated a five-year upper age relaxation for admission in HEIs (Ministry of Law and Justice, 2016). Half a decade past the Act’s formulation many questions have arisen regarding the flaws in its implementation. A study by Disability Rights India Foundation on the implementation of the Act across 24 states revealed some of these flaws which includes the reluctance of states to notify the state legislations in line with the RPWD (58.3%), lack of advisory boards (50%), lack of state commissioners for people with disability (37.5%), lack of fund allocation (79.2%), lack of budgetary allocation (79.2%), lack of notified special courts (58.3%), and lack of special public prosecutors (87.5%) (‘Disabilities Act’, 2018). Though the judicial construction and interpretation of disability are now influenced by the rights-based legislation, some negative conceptualizations persist. The impact of age-old stereotypes of people with disability that emphasize incapacity, helplessness, and stigma is still pervasive. The Act promotes substantive equality in theory, but the judicial construction of ‘difference’ and the emerging practice is still coloured by the cultural concepts and stereotypes of disability and the medical model (Jain, 2021).

520  Research handbook on disability policy

INCLUSION OF DISABILITY IN THE INDIAN HIGHER EDUCATION SYSTEM The history of higher education in India can be traced back to the Vedic period of 600 bc (Hossain & Mondal, 2019). By 1857 the formal university education system was introduced by the British government as a tool for cultural colonization in India (Choudhary, 2008). But as with many other colonial nations around the world, disability inclusion was not part of this higher education agenda. Post-independence in 1955 India drafted its first five-year plan. As a piecemeal effort a National Advisory Council for the Education of the Handicapped was constituted. The notions of education for people with disability were subjected to reconsideration and two approaches arose – the conservatives argued for special education and the progressive circles promoted integrated education. Two decades later in the 1970s, this special vs integrated education debate reached its peak and in 1974 India adopted the Integrated Education of Disabled Children (IEDC) scheme, which was a milestone in the education of people with disability (Sanjeev & Kumar, 2007; Sharma & Deppeler, 2005). However, most children with disability remained in special education for a much longer time (Rayadurgam, 2017). By the sixth five-year plan (1980–85) integrated education gained more acceptance. Nevertheless, access to higher education did not come into the agenda. The rise of disability rights movements in the 1990s and India’s participation in the World Conference on Special Needs Education in 1994 initiated a shift in the debates about integration to that of inclusion. India’s first Act concerning disability, the Persons with Disabilities Act (1995) was enacted during this time in the eighth five-year plan (1992–97). As the Act’s formulation had begun many years before the shift towards inclusion debates, the Act was limited to an integrative approach. The Act for the first time introduced reservation for people with disability in higher education whereby every higher educational institution is mandated to reserve 3% of its seats for people with disability (Ministry of Law, Justice and Company Affairs, 1995). This reservation, an affirmative action, instrumentally promoted access to education but did not include any measures for reasonable accommodation and inclusion of people with disability into these institutions. This triggered the need for an overarching policy to address these lacunae. The HEPSN scheme was introduced in this context in the next five-year plan (1997–2002). Under this scheme HEIs were provided financial aid to ensure accessibility of physical infrastructure, provide assistive devices, and conduct disability awareness programmes in their campuses. It provided students with disability the access to the regular course curriculum and assisted the HEIs to facilitate the same (University Grants Commission [UGC], 2012; Jameel, 2011). Following this, in 2006 the National Policy for Persons with Disabilities was enacted. The policy allocated funds to establish a Disability Centre to cater for the educational needs of people with disability and promote physical infrastructure accessibility in higher educational institutions (Ministry of Social Justice and Empowerment, 2006). Certain provisions in terms of improving accessibility and promoting the barrier-free campus environment, scholarships/fellowships, remedial coaching, hostel facilities, etc., were introduced in the following five-year plans. As disability debates progressed the need to reform the PWD Act (1995) emerged. As a result, in 2016 a more comprehensive Act, the Rights of Persons with

Inclusion of students with visual impairment in Indian higher education  521 Disabilities (RPWD) Act, was formulated. This Act is structured on a rights-based framework and concerning higher education, the Act increased the disability reservation from 3% to 4%. The shift in the language and concepts of human rights has initiated a transition in the disability policies. However, multiple policy implementation questions remain unaddressed. How do rights-based policies and legislation for the higher education of people with disability empirically operate on the ground? Was the policy able to bring the people with disability into the field of knowledge production? Are the subjective experiences of the impairment and its intersectionality adequately represented in the policies? To address these questions the chapter draws instances from mixed embedded research on the lived experiences of students with visual impairment of access and participation in educational activities in the higher educational institutions in Kerala, India.

METHODOLOGY The chapter uses critical policy analysis methods, supported with insights from a mixed embedded study on the access and participation of students with visual impairment in the higher educational institutions in Kerala, India. Through critical policy analysis this chapter focuses on exposing the inconsistencies between what policy says and what policy does, the difference between policy rhetoric and practised reality (Young & Diem, 2018), particularly in terms of access and participation in higher education. The study explores how the existing disability policies serve as a tool for marginalization and how existing unequal distributions of capital (economic, cultural, and social) are maintained through these policies. The mentioned mixed embedded study combined the collection and analysis of both quantitative and qualitative data within a traditional quantitative research design (Creswell & Clark, 2010). The primary quantitative data collection was conducted in 2018 among 60 students with visual impairment enrolled in two State universities and their affiliated institutions of higher education in Kerala, India. Following this, ten participants were selected from this group for in-depth qualitative interviews through purposive sampling. Among the various findings that emerged from the study, this chapter focuses on the findings concerned with the implementation of disability policies and their impact on the lived experiences of access and participation of the study participants. The lived experiences were elicited through in-depth qualitative interviews and analysed through thematic analysis. All names are changed in the presentation of the results. Drawing from the above sources the study analyses two of the major disability policies pertaining to higher education in India, the HEPSN scheme and the RPWD Act (2016). The analysis focuses on the implications of the policies on the lived experiences of students with visual impairment as they engage with the higher education system. In the spirit of disability studies (Barnes, 2004) the study ensured the participation of students with visual impairment throughout the different stages of the study including the formulation of research questions, research design, tool preparation, and analysis. In addition, the lived experience of the first author as a person with visual impairment pursuing higher education in the same system enhanced the depth of the study.

522  Research handbook on disability policy

UNDERSTANDING THE HEPSN SCHEME IN DEPTH The HEPSN scheme is broadly defined as an initiative to create an environment at the higher educational institutions to facilitate and enrich the higher education learning experience of people with disability. The scheme focuses on five specific objectives: 1. To create equal educational opportunities for students with disability in HEIs. 2. To create awareness among the functionaries of higher education about the specific educational needs of students with disability. 3. To equip HEIs with the facilities for them to provide access to students with disability. 4. To provide special devices to the HEIs that will augment the learning experiences of students with disability. 5. To monitor the implementation of all existing and future legislation and policies about the higher education of students with disability. The objectives are broadly divided into three components – awareness, access, and assistance. First, to facilitate awareness, the scheme proposes the establishment of an ‘enabling unit’ in eligible universities and colleges. The main objective of these units is to facilitate admissions, provide guidance and counselling for students with disability, and assist them to attain appropriate employment. The enabling unit is coordinated by a faculty member appointed by the head of the institution. The scheme also mentions the appointment of an honorary counsellor to cover the placement officer in every unit. The higher educational institution is responsible for providing necessary support and ensuring the smooth functioning of these units. The scheme also provisions financial assistance for seeking expert support from disability professionals, conducting awareness programmes and counselling sessions, and ensuring independent and efficient functioning of the unit. Second, concerning access, the scheme identifies architectural barriers as one of the key issues faced by students with disability in accessing higher education. As a solution, the scheme proposes the need for improving the infrastructural accessibility to make the campus disabled-friendly. As the scheme is formulated based on the PWD Act (1995) it is expected to make these accommodations termed as ‘special arrangement’ in the existing structures and the future constructions. The scheme provides financial assistance of Rs. 10,00,000 to facilitate these accommodations. Once enrolment and access to physical infrastructure are ensured, the scheme focuses on assisting students with disability through the provision of special equipment/assistive devices to augment the educational services. It encourages the higher educational institutions to procure assistive devices such as a computer with screen reading software, low-vision aids, scanners, and mobile devices to enrich the educational experience of students with disability. It provides financial assistance of Rs. 8 lakhs for the same (UGC, 2012). Thus, through the establishment of an enabling unit for disability awareness and by ensuring the infrastructural accessibility and availability of assistive devices the scheme aims to create equal educational opportunities for students with disability in higher education institutions. Framed on the paradigm of social justice the scheme could be considered as affirmative action by the State. It enhances the visibility of students with disability in higher education who have been historically marginalized in the standardization process of modernity.

Inclusion of students with visual impairment in Indian higher education  523 However, the scheme failed in the delivery of substantive justice to the community. As disability is a broad and ever-changing arena, the needs and accommodations each person with disability brings to the table are highly diverse. Considering these diverse needs and accommodations within the human rights paradigm, the above provisions of HEPSN are highly reductionist. Though the scheme promoted the access and participation of students with disability, it stumbled in the delivery of substantive justice to the community. Rather than ensuring equitable access and participation for all students with disability, the core element of the inclusion debate, the scheme limits itself to just the provision of services. Drawing instances from the mixed embedded research, the following section elaborates how the scheme takes a reductionist stand as it struggles to achieve its proposed aims in a holistic manner from a human rights perspective.

ANALYSING HEPSN FROM A HUMAN RIGHTS PERSPECTIVE The CRPD provides us with a comprehensive approach to realizing the rights of people with disability. The UN Office of the High Commissioner for Human Rights describes a human rights-based approach to disability as: A rights-based approach seeks ways to respect, support and celebrate human diversity by creating the conditions that allow meaningful participation by a wide range of persons, including persons with disabilities. Protecting and promoting their rights is not only about providing disability-related services. It is about adopting measures to change attitudes and behaviours that stigmatize and marginalize persons with disabilities. It is also about putting in place the policies, laws and programmes that remove barriers and guarantee the exercise of civil, cultural, economic, political and social rights by persons with disabilities. (UN, 2006)

Protecting and promoting the meaningful access and participation of people with disability should be thus the core of all disability policies, laws, and programmes. When viewing the HEPSN through a human rights lens, pitfalls become evident that hinder the access and participation of people with disability in higher education. These pitfalls include: (i) the inherently exclusionary design of the scheme; (ii) reliance on the medical model for the functioning of enabling units; and (iii) defining disability as a homogenous category. Exclusionary Design The right of people with disability in higher education is understood within the purview of welfare discourses. Taking reference from the PWD Act (1995) the scheme takes a partly essentialist stand on disability where the concept of integration rather than inclusion receives recognition. HEPSN is the only scheme concerning the inclusion of people with disability in higher education. However, as the scheme’s name suggests it considers ‘inclusion’ as a ‘special need’ not the ‘right’ of the person. It thus labels people with disability as the ‘other’ within the HEIs, who has ‘special needs’ which need to be accommodated. Taking a medical model the scheme marginalizes disability, locating the problem within the person and proposes integration as a solution to the problem. Thus, the State and authorities step out from their responsibility to ensure reasonable accommodation.

524  Research handbook on disability policy Similarly, the eligibility criteria for universities set under the scheme are contradictory and designed in an exclusionary manner such that the available provisions become inaccessible to many people with disability. For instance, according to the scheme, the university should enrol a minimum of ten students with disability, including people with visual impairment, hearing impairment, and mobility disability, in its various courses. Many of the universities do meet this criterion. However, in implementation, each HEI affiliated with the university should apply individually. And each of the institutions needs to have a minimum of ten students with disability to meet the eligibility criteria. However, data suggests that among the 3.7 crore students in higher education only 0.23% are people with disability (MHRD, 2019). In this background, with less than ten students with disabilities many HEIs does not meet the eligibility criteria for the scheme. This criterion thus leads to three situations: (a) many HEIs with less than ten students with disability are ineligible for the provisions under the scheme to support access to students enrolled in these institutions; (b) students with disability who wish to use these services are forced to move to other HEIs, which means their right to choose the HEIs appropriate to their education is curtailed; and (c) many students with disability enrol in HEIs that are inaccessible to them. The impact of this criterion violates the core principle of the UNCRPD as outlined under Article 3, and Article 24 which includes: non-discrimination; participation; autonomy, including the freedom to make one’s own choices; social inclusion; gender equality; and equality of opportunity. Under Article 24 on education, the UNCRPD reiterates the State’s responsibility to ensure inclusive education at all levels without discrimination and on an equal basis with others (UN, 2006). Through such exclusionary eligibility criterion, the scheme does not assist a large proportion of institutions and students. It hinders the discretionary right and choices of people with disability and restricts their access and participation in higher education. Reliance on the Medical Model for the Functioning of Enabling Units The establishment of the enabling unit is one of the key components of the scheme. It is the major tool to facilitate the admission of people with disability to a particular course; to provide guidance and counselling; to create awareness about the needs and other general issues regarding people with disability and their learning; and to assist people with disability to achieve gainful employment in relevant sectors. These units are managed by an honorary coordinator and a counsellor-cum-placement officer who is selected from the faculty members by the head of the institution. The functioning of these enabling units is evaluated from time to time by an expert committee appointed by the UGC. Analysis of the implementation of the scheme on the ground reveals that though the provisions under the enabling unit are framed in line with the principles of inclusive education, in implementation it continues to assert the fabric of special education. In functioning it relies on a medical model as the reference point to integrate people with disability into the mainstream of higher education. The coordinator and the counsellor-cum-placement officer are often considered as the experts and the role of students with disability is limited to that of a beneficiary. The epistemological authority and experiential knowledge of the students concerning their needs and accommodations are overpowered by the knowledge of these ‘expert functionaries’. The lived experiences of students in the study reveals that the functionaries in charge of the enabling unit often hold a reductionist notion towards disability and operate from a medical

Inclusion of students with visual impairment in Indian higher education  525 model. And their perceptions are directly reflected in the activities undertaken at these units. Thus, instead of being an ‘enabling’ unit, it many times serves a disabling purpose. For instance, Ms Veena pursuing her undergraduate in English shared how the counsellor at the enabling unit persuaded her to enrol in a Bachelor degree in English whereas she wanted to pursue a Bachelor’s in Commerce: I have taken commerce in my high school and wished to take up a career as chartered accountant or work in a bank… For this, I wanted to do my undergraduate in Commerce subject. But what to say… The counsellor at the college was more concerned than anyone else… without knowing me or my abilities he believed that it would be difficult for me to deal with numbers… It was not my choice at all. But I had to take this course (BA English)…

As this example shows, the stereotypes about people with disability being unsuitable for STEM and commerce courses (Deacon, Macdonald, & Donaghue, 2020) is carried forward by the counsellor. Many other participants also shared similar experiences where the counsellors influenced them to choose from a limited number of courses, mostly from arts and humanities, even though their interest was in other subjects. Previous studies have reflected this over-representation of students in the humanities stream (70.2%) and the rest being enrolled on commerce (24.6%) and science (6.3%) (Jameel, 2011). Here disability is not understood as a subjective experience but a homogenous categorization. Some of the students opined that it is the benevolent ableist nature of the counsellors and HEIs which leads to such instances. However, taking a human rights perspective such acts stand in violation of the central principle of non-discrimination under Article 2 of the UNCRPD which is critical for ensuring equal access to higher education for people with disabilities. According to Article 2 of the UNCRPD discrimination based on disability means: Any distinction, exclusion or restriction based on disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. (UN, 2006)

Besides these discriminatory acts of stereotyping and limiting the students’ freedom to choose the course of study, the functionaries also link the problem of inaccessibility to the student rather than to the course. Thus, applying the medical model, the person with disability is problematized and the structural and attitudinal barriers which lead to inaccessibility are neglected. Assumed Homogeneity and its Outcome The lack of recognition and accommodation of differences that emerge in the implementation of HEPSN comes from the assumed homogeneity of people with disability. Homogenization of disability is a consequence of the reductionist stand of the medical model (Lawson, 2001). Even the social model, which is an analytical tool that provides tangible benefits to people with disability, through its political nature sometimes leads to a homogenization of disability experiences. Although homogenization has certain political and psychological benefits, as it creates a sense of belonging and unity, and shapes a united front to be presented in politicized debates (Shakespeare, 2014), it is also intimately tied to many problematic consequences.

526  Research handbook on disability policy Due to this assumed homogenization, the universities and HEIs fail to recognize the subjective lived experiences of impairment, resulting disability, and multiple intersectionalities which are highly diverse. They consider the disabled community as some incomprehensible others or a collective of beings indistinguishable as individuals (Sait, 2015). By not recognizing the differences between and within disabilities the specific needs experienced by each person are not identified. Thus, the accommodations planned to facilitate access and participation are highly limited and do not serve the purpose. The study participants revealed that they experienced the issues of homogenization with respect to the provision of access and assistance, the two major components of the HEPSN scheme. Under these components the scheme aimed to make ‘special arrangements’ and provide ‘special equipment’ to enhance mobility and independent functioning, and augment educational services. Though some of the students benefited out of these provisions, the homogenization created roadblocks for many others. As Shakespeare (2014) explains, people with different impairments experience different disabilities and require diverse and often conflicting accommodations to ensure access and participation. For instance, Ms Riya, a student with visual impairment, explained how the ramps designed for facilitating mobility for people using a wheelchair become a hindrance for her movement due to issues in their construction. I am in my third year of college... we don’t have any tactile paths or any curbs to help me navigate. But after being here for last two year I became familiar with many of the places... but recently some ramps were constructed in many of the places including classrooms, library and hostel. But as there is no demarcation between the ramp and the steps it hinders my mobility a lot. I understand that it is very necessary for my friends who are using wheelchair. But the administration should have thought of us (students with visual impairment) and our needs also and could have done it in a better way.

Furthermore, there are differences within impairments and the resulting disabilities. One of the study participants Mr Muhammed’s experiences with the reasonable accommodation and provision of assistive devices provided by the university could be understood as an example of homogenization and resulting lack of recognition and accommodation. A large part of my schooling was done in special schools. I was a bright student there. I have been using braille to write notes and exams at school. But after coming to the college, I was told that I will have to learn computer and use it instead of braille… this was a tough task for me… I realize that learning computer would be helpful, but here it was a compulsion… even at my college’s enabling unit we have a few computers but no braille printer. I am very skilled and comfortable to read and write in braille… and I used to do my assignments and exams easily in braille… but here no one recognize this and just compare me with other students who are skilled in computers… now I have to put extra efforts to learn computers first and until I become expert in it, I am literally forced to be dependent on a scribe…. All these things are affecting my studies a lot.

These instances draw attention to the homogenous views on disability and people with disability and the lack of focus on intersectionalities, which does not do justice to the subjective life experiences of these individuals and reasonable accommodations necessary for them. Assuming such a level of homogeneity appears contradictory to the human rights approach that protects respect for differences and promotes reasonable accommodation to ensure that people with disability experience all human rights and fundamental freedoms on an equal basis with others (UN, 2006).

Inclusion of students with visual impairment in Indian higher education  527

ANALYSING RPWD FROM THE HUMAN RIGHTS LENS The enactment of the RPWD Act (2016) paved way for the rise of a rights-based approach in policy making in India. The Act enhanced the provisions of the PWD Act (1995) with insights from the UNCRPD, which was based on the concepts of human rights originated from the Western liberal political context (Meekosha & Soldatic, 2011). Though the RPWD Act adopted a human rights-based framework the inherent logic of the legislation is structured in the liberal model of rights (Vasanthi, 2020). The human rights framework promotes equal and inalienable rights to all, without distinction of any kind. However, the liberal model of rights rooted in the able-bodied viewpoint promotes homogenization and fails to recognize the subjective lived experiences of people with similar and differing impairments. The people with disability experiencing the intersections of multiple socially and bodily inscribed and ascribed statuses are not adequately represented in the liberal model of rights. The Act partly adheres to the medical model by making the certification by the medical experts the basis for the recognition of disability, and blurs the distinctions between disease and disability by adding 14 new categories of disabilities into its purview. For instance, chronic neurological disorders such as multiple sclerosis and Parkinson’s disease, and blood disorders such as haemophilia and thalassemia are now considered as disabilities. In the domain of education, the Act promotes the idea of inclusion. It brought a systematic change in education practices and proposed the need to reform the existing structures of teaching and learning practices. Rather than making ‘special arrangements’ in the regular mode of education, the Act promoted the concept of rearrangement in the methods and pedagogies of teaching by recognizing the diverse learning needs of the students. Providing such a least restricted environment would ensure maximum participation and use of maximum capabilities of the students with disability (Rani, 2018). The Act includes the State’s responsibilities such as ensuring inclusion in all academic institutions; provision of books, other learning materials, and appropriate assistive devices to students with benchmark disabilities free of cost; provision of scholarships in appropriate cases to students with benchmark disability; and provision for suitable modifications in the curriculum and examination system to meet the needs of students with disabilities etc. (Ministry of Law and Justice, 2016). These provisions are listed under the RPWD Act, but they are limited to school education only. Although these provisions are equally necessary for facilitating the access and participation of students with disability in higher education the Act takes a reductionist stance regarding higher education. The rights of students with disability in higher education are outside its legal protection. The Act gives a legal sanction to the rights of people with disability pursuing their school education, but this legal sanction does not extend to higher education. Thus, the rights-based framework of disability legislation does not recognize the right to higher education. Only Section 32 concerning the reservation of places particularly mentions higher education. Under this section the reservation for students with disability in HEIs is increased from 3% to 5% and the age limit for admission is increased by five years. However, considering the increase in the number of disability groups these reservations are highly inadequate and do not serve the purpose of ensuring access to higher education for all. And for those who have enrolled in HEIs the Act has nothing to offer for ensuring their participation. While the rights of people with disability are promoted in every life domain, higher education remains a low

528  Research handbook on disability policy priority. Nevertheless, higher education has a decisive role to determine one’s future thereby having influence on other domains. For instance, a higher education qualification is a prerequisite to receive recognition in the labour market and improve employability. In this situation the HEPSN scheme which is based on the PWD Act (1995) remains as the major guideline to ensure access and participation to people with disability in higher education. However, as a scheme rather than a law, the HEPSN is not enforceable or legally binding. Hence, including the right to higher education as a legal obligation under the RPWD Act is vital. Similarly, as the RPWD Act stands as a normative legal statute on disability it will serve as a guideline for formulating any scheme or policy on disability from a rights-based approach. If the HEPSN scheme is revised it will be done based on the RPWD Act. In this situation the liberal rights model which is rooted in the able-bodied viewpoint will not be capable of repositioning the world from the standpoint of the person with disability (Vasanthi, 2020). This model also fails to consider the subjective experiences of impairment associated with the bodily inscribed and ascribed status. The study participants revealed that the failure to recognize the subjective experiences of impairment led to many consequences. On one side the impairment sometimes limited their participation in educational activities despite having the access. On the other, the stigma attached to the impaired body restricted them from participating in such activities. The Act’s lack of focus on intersectionalities in education particularly higher education is another major concern. The study participants revealed that the multiple identity factors such as sex, gender, caste, social and cultural capital, and the variations in the acquired skills influence their experience of disability. One of the participants Ms Safeena shared how the intersection of sex, gender, and disability restricted her from accessing the facilities at the enabling units. There was no training for assistive devices or software in my school. As I am a girl having a disability my parents were afraid to send me outside to any kind of computer coaching or trainings. Because of this my computer skills are very poor… On coming to college, I was very hopeful that I’ll be able to learn these skills here. But the enabling unit in my college is located a bit far from the girls’ hostel and we can’t go out of the hostel after a fixed time. The male students go to the units with their friends even if it is late in the evening. Because of this I have not been to the units or used any of the services there.

Thus, multiple identity factors contributed in different degrees to the intersectional marginality and discrimination, and created differing needs and accommodations among the students. These needs and accommodations are not homogenous for people with similar impairments. It is rather a product of intersections. Addressing disability in a substantive way would give visibility to such issues and framing disability rights on intersectional grounds could act as a tool for inclusion.

CONCLUSION The body of literature concerning disability and higher education in the Indian context has mainly dealt with the issues of access, accommodation, the attitudes of teachers and peers, and the role of assistive technologies. Studies also pointed out the need for the appropriate

Inclusion of students with visual impairment in Indian higher education  529 implementation of disability policies in Indian higher education. However, the implementation of the policies and the lived experiences of people with disability in accessing the disability services, schemes, and policy in higher education have remained under-addressed. Identifying this knowledge gap this chapter explores ‘How rights-based policies and legislation concerning higher education of persons with disability empirically operate on the ground in India’ The chapter analyses the RPWD Act (2016) and the HEPSN scheme, major legislations on higher education of persons with disability, with a human rights framework and explored their influence on the subjective lived experiences of access and participation of students with visual impairment enrolled in the higher education institutions in Kerala, India. The insights that emerged from the policy analysis and the embedded research indicate the inherently exclusionary design of the scheme; the reliance on the medical model for the functioning of enabling units; and the assumed homogeneity of disability and its outcome. It is also indicative of the reductionist stand of the RPWD Act in the context of higher education and the Act’s lack of focus on intersectionalities. Through the lived experiences of the students with visual impairment in higher education the chapter elaborates on how these factors influence the access and participation of these students in higher education. Major barriers experienced by the students were related to time constraints, insufficient use of computers and technology, and barriers to the social participation of students with disability. These insights deepen the knowledge and perception about access and participation and add new dimensions to the inclusion debate in Indian higher education. Rather than separating policy and student experiences the chapter integrates the two to attain a holistic understanding of the scenario under consideration. It raises considerable dilemmas regarding disability inclusion because of the structural inequalities ingrained within the system, which are recreated and perpetuated through discriminatory elements of these policies. The disability policies in India have not taken a substantive stance regarding higher education and they are not legally binding. These policies follow the model of integrative education and consider people with disability as beneficiaries of the welfare state. They include the notion that students with disability need ‘special’ statuses, rather than the recognition of their rights to higher education, to participate on an equal basis with others. These findings hold relevance to higher education institutions, policy makers, and disability professionals to reconsider the existing policies and provisions and identify the accommodations and services needed to enhance the inclusion of students with disabilities in higher education. First, the provisions of the RPWD Act should be extended beyond school education, to recognize and safeguard the right to inclusive higher educational opportunities. At the same time, the HEPSN scheme should be modernized with the insights of the UNCRPD on which the RPWD Act is foregrounded. The right to access and participation, the inherent part of the inclusion debate, cannot be achieved unless these disability policies and schemes are modified based on the human rights approach. Once reformulated based on human rights, HEPSN could gradually be developed into a disability policy with its primary focus on the access and participation of people with disability in higher education. These policies and schemes should move beyond just the provision of services, and rather than considering people with disability as a homogenous entity, the diversity of the lived experiences of disability, such as the variations in the nature and experience of impairment, acquired skills, cultural capital, etc., should be recognized in policy formulations. The policies should address disability as a fluid identity which is continuously changing as it interacts with other identity characteristics such as gender, class, caste, sexuality, etc. This focus on inter-

530  Research handbook on disability policy sectionality at the conceptual frame of disability policy should be attained without leaving the commonalities aside, to bring multiple needs into account. Application of the liberal model of rights rooted in the Western political context should be modified and redefined based on the social and cultural context of India. Rather than seeing disability rights from an able-bodied individualistic perspective, rights should be defined from the subjective lived experiences of impairment of people with disability in India. This approach would protect the rights to access and participation of people with disability while being considerate of the differing disability experiences within the community, and it would extend disability policies beyond the idea of procedural equality and build an understanding of equality in a substantive way which ensures transformative equality for people with disability in the higher education system in India.

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PART III HEALTH Sally Robinson

Part III of the book focuses on the intersection of health with human rights and disability policy. We take a broad approach to health and wellbeing, focusing on the ways that policy shapes how people with disability are able to constitute their daily lives, as well as the social and structural conditions within which individual circumstances are enacted. Broader approaches to health and wellbeing are helpful here, which consider physical, psychological, and social wellbeing, and not only the absence of infirmity or disease. For example, Krahn et al. (2021) propose a definition of health as ‘the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment. Health is dynamic, continuous, multidimensional, distinct from function, and determined by balance and adaptation.’ The medical model of disability has historically dominated approaches to policy, resulting in an individualistic view of people with disability as in need of treatment by specialists of one kind or another, and disability as a condition in need of identification, prevention, or amelioration. At a policy level, a primary goal through a medical model lens is to provide healthcare and rehabilitation services (Katsui & Chalklen, 2020). The impact of this frame is a resulting policy focus on disability being an essential and diagnosable state in an individual, with the onus then on providing mechanisms that assist the individual to adapt and accommodate to the majority environment. Shifts to bring together a medical understanding of disability with the broader social models of disability and human rights have resulted in categorisations such as the International Classification of Functioning, Disability and Health (ICF), applied at the person and population level. The ICF focuses on body functions, activities and participation, and the environment or context surrounding the individual. Chapters in this section grapple with questions about how human rights approaches in health might open new space to interrogate our understanding about what is possible for people with disability in contested spaces, such as end of life, genetic testing, or robotics. They straddle multiple ways of thinking about disability, to acknowledge the complex reality of material bodies. 533

534  Research handbook on disability policy Part III opens with a narrative from Dr Raelene West about the intersection of policies and practice which result in poor quality care, and how much self-advocacy is needed to avoid a poor outcome when systems are failing. This very thought-provoking piece challenges us to think about how we can make meaningful change grounded in human rights and dignity. The first set of chapters in Part III are about understanding and applying frameworks so people can access and activate their right to health. Smith-Merry maps the history of practices which led to the development of the ICF in parallel with the UNCRPD, examining how each might be put to work in the interests of disability policy that progresses the health-related rights of people with disability. Bottini Filho applies the three core principles of human rights law to health-related quality of life to propose an alternative approach to evidence-making which counters dominant measurement clinical and economic models which can distort or undervalue the experiences of people with disability. Brown and Ferrie critically evaluate how PANEL principles of participation, accountability, non-discrimination, empowerment, and laws can work to uphold the rights of people with disability as they learn about new experiences of disability and impairment. The second group of chapters in Part III address policy in contested and rapidly changing health and human rights spaces. They focus particularly on rights and policy questions which are thrown into high relief by technology and scientific progress. In their chapter, Bryden, French, and Gran address how exercising the human right to science has the potential to reduce complicated barriers to accessing life-enhancing technologies. The implications for policy translation and application from linking human rights frameworks to social systems, medical institutions, and political systems have broad potential. Alongside this chapter, Professor Brooke Ellison’s narrative speaks about how deeply integrated technology is in her life and the lives of many other people with disabilities, and its transformative capacity. Far too little of the ‘technology revolution’ has had the needs, lives, and abilities of people with disabilities central to its design. The last chapter in this group by Ayers and Schneider unpacks policy and legislation and the multiple perspectives of different groups in the contested and difficult context of accelerated prenatal genetic technologies. Kodate, Mannan, Donnelly, Maeda, and O’Shea discuss the potential for robotics to play a role in the daily care and support of older people with disability in aged care, using the UNCRPD as a frame to assess the potential for robotics to support healthy ageing in place and interrogate ethical issues and barriers. In this vein, the following piece is a conversation between Sophie Savage and Tillie Curran about their project ‘Disability rights and robotics’. It relates Sophie’s perspective about imagining futures that were not part of her world as a disabled child. Sophie discusses the significance of the shift from being a subject of research to a creator of innovative knowledge, and how important it is for research not only to take account of power relations by including diversity, but to be considered part of disabled people’s right to education. In the third part of the health section, a collection of chapters provide us with detailed and nuanced examples which balance people’s own priorities and their human rights with often difficult policy contexts. They provide practice examples of the right to embodied health, wellbeing, and self-determined ways of living well, and of how policy both enables and constrains people’s access to what they want and need at different times in their lives. Runswick-Cole, Goodley, Liddiard, and Whitney bring the priorities and perspectives of young people with disability to the fore in their chapter. They point to the rich (and largely untapped) potential

Part III: Health  535 for policymaking and discourse to be improved by honouring the lived experience, futures, and human rights of children and young people who have ‘life-limiting and/or life-threatening conditions’. Beckwith and Laurance discuss inclusive sexuality education for women with disability. Framed around sexual justice, pleasure, and agency, this chapter uses a human rights framing to interrogate a subject which has often been treated as a personal development or health issue for people with disability. It is for this reason it is so well located in this section, emphasising the breadth of the social and cultural dimensions of health. Underlining this, Lee Tsourvakas’ narrative brings home the urgent need for this education and why it matters so deeply to young women with disability. The final chapter in this part of the book is by Julieth and Martin Musengi. It explores the need for more effective pain management and access to medications for people with disability in palliative care in Zimbabwe and the importance of policy that can improve the access of people with disability to healthcare rights yet still respect the traditional cultural contexts in which palliative care takes place.

REFERENCES Katsui, H., & Chalklen, S. (2020). Disability, globalization and human rights. London and New York: Routledge. Krahn, G. L., Robinson, A., Murray, A. J., & Havercamp, S. M. (2021). It’s time to reconsider how we define health: Perspective from disability and chronic condition. Disability and Health Journal, 14(4), 101129. https://doi.org/10.1016/j.dhjo.2021.101129 ​ ​ ​ ​ ​​ ​ ​

44. Narrative 13: Voice, choice and a better outcome Raelene West

Finally dressed and up into my wheelchair, I made a few calls and then wheeled over to the nurses station: ‘I’m just letting you know that I’ve booked a taxi to get myself home … it will be here in about 15 minutes and I’m discharging myself; I’ve arranged for a support worker to meet me at my house when I get home and I organised 24/7 support workers to be on for the next 2 weeks while I heal … so just letting you know.’ Despite the charge nurse’s disbelief and opposition, I explained that I was leaving and, still in relative discomfort, I wheeled out of the ward to the lifts to head downstairs to the taxi. It wasn’t that the nurse had done anything wrong or had breached any laws or broken any human rights. It was just that they didn’t really know what they were doing in relation to disability and spinal care. The management of the hospital had decided to put me in a general ward because the spinal ward was full. Initially things were ok. After I returned from the surgery, I was just in bed resting for the first couple of days. Not having an air mattress though, we had to do pressure relief rolls where I was positioned onto my other side every two hours, so sleep was interrupted a lot. But besides that, things weren’t too difficult. Other than the rolls, the nurses only had to help me to eat and drink while in bed. But by day three, I really needed to get up and have a shower, do my bowel care and wash my hair so I felt human again. And so the difficulties started. A nurse came to the bed and said how do you usually do your bowel care? I explained to her that I usually have an enema in the bed and then transfer onto the shower chair and then sit over the toilet. The nurse left and scooted around the ward for a while. After about ten minutes she returned and said ‘The hospital doesn’t have the regular enema that you use. We’ll have to just give you one of the suppositories we have here.’ I wasn’t overly keen about this. Having been a spinal patient for 20 years, I know that if you use different types of these things either nothing can happen or too much can happen because the body is used to its routine and change – it just causes issues. But given the situation I didn’t really have a choice, so I agreed. Five minutes later the nurse wandered back wheeling a shower commode chair that looked like some sort of steel shopping trolley from the 1970s. Straight away I looked at it and thought ‘I don’t think I’m gonna fit in this size wise.’ I am only small, about five foot three, and I’m sure that this chair was meant for some sort of six-foot giant football player. I asked the nurse if there were any other shower commode chairs around the ward, with maybe shorter foot plates and maybe some more padding on the back rest so that it would be more comfortable; to her credit she wandered off and gave it a go and did find a different chair although I could see it was still was the wrong size and the wrong shape and didn’t have any backrest padding. Somehow though I needed to get up and have this shower and go to the toilet. Next there was the big commotion of the transfer. Not being able to stand and weight bear, I have to do a full transfer using a lifting machine and a sling. At home where I have my perfectly fitting sling and perfectly fitting shower chair and the support workers that have worked for a few 536

Narrative 13: Voice, choice and a better outcome  537 years and know exactly how to do the transfers most efficiently and with little discomfort, transfers are ok. However, the efforts of three nurses untrained in using a lifting machine were challenging. First, they were trying to put a sling on which didn’t really fit in the first place and was a different shape than my normal one. The pushing and pulling and rolling many times, especially after I had just had surgery a few days back was making me pretty achy. A nurse I hadn’t seen before then arrived with the lifting machine, she commented that she had only done transfers in training about a year ago and wasn’t overly confident with everything. Great. So, we go to start the transfer, but they realise the battery on the lifting machine is flat and the non-confident nurse now has to wander around to a different ward to try and find another lifting machine that hopefully has a charged battery. The other nurses disperse. I imagine there were lots of other things to still do on the ward that morning and no doubt this break in time meant they could attend to a few other little pressing tasks. Finally, the non-confident nurse arrived back – a charged battery in hand that had been obtained from who knows where. It was also pretty clear that privacy would probably be out of the window. The ward had three other patients in it so the nurses set about trying to move and angle the other beds away and strategically close curtains so that we had enough room to do a transfer in the room with some level of privacy – but not really much. And so, the commotion of the transfer started. We all tried to work together lifting, pulling, turning the sling, banging my head, banging my feet, trying to get me up in the air and then onto the shower chair which didn’t fit. When I landed on to the shower chair my feet couldn’t reach the footplate. I quickly called to the nurses to grab some pillows to prop up my feet so I could at least try and get my balance and could sit on the chair without falling. The backrest, as predicted, was really uncomfortable and because of the chair being the wrong shape I felt like I was about to slide onto the floor. The movement had also made the surgery area really, really achy and uncomfortable. With two nurses holding my shoulders trying to balance me we somehow crab-walked ourselves into the bathroom area. I was feeling so unstable I wasn’t sure how long I was going to be able to sit there. The nurse asked if I thought I’d be able to balance enough to sit there on my own, but I wasn’t confident. Not being a spinal care nurse, I don’t think she understood the amount of risk of fall that I was currently in. I suggested what about a dressing gown cord or something and I tie myself across the shoulders and onto the chair so at least I could sit there propped up and might be able to get some balance for 10 or 15 minutes. A few minutes later another nurse arrived back with a dressing gown cord which we managed to use to tie me to the shower chair so I could balance enough to finish the toileting and have a shower. For the next 10–15 minutes, I sat there trying not to breathe too much so I wouldn’t lose my balance, holding on where I could, petrified that I was just going to collapse and fall out of this chair. Thankfully everything worked ok in the bowel care department soon enough, and after the toileting, a nurse returned and I was able to get my hair washed and have a shower. The nurse team returned and we repeated the ordeal of the curtains and the pushing and the pulling and swinging me around, banging my feet, nearly collecting my head and trying to get the transfer completed and get me back into the bed in one piece. I spent the rest of the day and that night in bed resting, trying to get over the morning’s ordeal; sleep was pretty difficult with the IV machines pinging every half an hour or so, two hourly pressure rolls, and the nurses moving around the ward a lot because one of the fellow patients was pretty ill.

538  Research handbook on disability policy By 5am I had thought through an escape. When the nurses arrived later in the morning I would just tell them that I didn’t want to shower and then I just wanted to get dressed and pop into my power wheelchair to go downstairs and have a coffee. Yes it was going to be a white lie but there was no way I was going to be able to heal well in that place with the lack of sleep and noise and non-fitting equipment and everything just not right – I guessed I was looking down the barrel of six to eight weeks there if I didn’t move then, and months if I actually did have a fall and break something. The new nurse that arrived that morning was a little surprised that I didn’t want to have a full shower and just a sponge, and that I wanted to get up and dressed and into my wheelchair. She probably had a pretty busy morning scheduled and the fact that the quadriplegic didn’t want to get up and have a shower and that she didn’t have to use the sling and the lifting machine and a team of nurses was probably more a relief to her than me. Once in my power wheelchair I at least had some power to move and make decisions. I grabbed a visitor walking past and got them to grab my bag and throw my clothes in it and put the bag on the back of the chair. Then I got someone to help me grab my phone. Once on the phone, I quickly organised the support workers in the agencies, notifying them I was on my way home. As I mentioned the nurse at the desk was pretty surprised that I was discharging myself – I don’t think she was used to quadriplegics or working with spinal care and I think she was just in a bit of shock; but I wasn’t hanging around for her to call security or change her mind. Smiling but in agony already, I wheeled out of the ward, got myself downstairs, met the taxi, got myself home, met the support worker and got myself into the comfort of my own home and equipment and with staff who knew what they were doing. Thirty minutes of agony had been worth it because now I could finally, finally rest and relax and heal properly. As I said it wasn’t that the nurses had done anything wrong, or any rules had been broken or any rights had been breached – but things weren’t right. None of the equipment was right, nothing was set up properly, the nurses didn’t quite know what they were doing – and it was just really awkward and lacked privacy. I think I was just lucky I could speak out for myself and make some decisions and get myself to a place where I’ll be able to heal. A fall would have meant I would have been in hospital for months, and I don’t think the surgery was going to heal with all the unnecessary pushing, pulling and movement in the ghastly transfers. It was just lucky that as a person with a disability I was able to exercise my voice and choice and was allowed to make a decision that knowing my own situation provided a better outcome overall. But should it be a matter of luck?

45. Making disability known: medicalisation of disability and the development of the International Classification of Functioning Jennifer Smith-Merry

INTRODUCTION There is an uneasiness to the relationship between disability and health in both practice and policy. Medical practice can simultaneously be too close and too far away and both circumstances have the potential to impact negatively on people with disability. Medicine defines what is healthy and what is unhealthy, with a focus on the latter. Health is equated with a normal state of being and other states, where the body is disordered or diseased, are considered abnormal and in need of treatment. This has been described as a ‘medical model’ of disability, which sites disability in the body of the individual and therefore the individual becomes the object of treatment and control (Oliver, 1990; Hogan, 2019). This has been contrasted to a social model of disability, where disability is viewed as a result of social practices that operate around an individual to limit and ‘disable’ them. For many people with disability neither of these approaches rings true, and the lived reality of a body impaired by disability must be understood in relation to the social conditions around the individual (Shakespeare, 2013). It is the interaction of these circumstances which creates the lived experience of disability. Tom Shakespeare (2013, p. 11) writes that the “term ‘social model’ has become synonymous with progressive approaches to disability, while ‘medical model’ sums up everything which is backward-looking and reactionary.” I have no wish to do that in this chapter, but instead I wish to answer recent calls to “historicise the medical model concept” (Hogan, 2019, p. 244) and draw attention to a history of practices around the classification of disability from a medical perspective and the impact of human rights in challenging these practices and bringing forth a new way of conceptualising the classification of disability. The uneasiness surrounding disability and medicine, of which I spoke before, comes from a situation where there is a unidimensional focus on the body as the locus of disability and a concomitant ignorance to the multidimensional health needs of people with disability. People with disability have poorer health outcomes than the general population, even when the physical impacts of their disabilities are taken into consideration. The reasons for this are multilayered and include: ● Health practitioners considering a person only in connection with their disability-related functioning without considering health promotion activities or circumstances in their lives that may contribute to poor health (Rimmer, 2002). ● Some medications that are taken by people with disability may impact their physical health, for example anti-psychotic or anti-depressant medication may lead to weight gain which leads to diseases such as diabetes (Tosh et al., 2014). 539

540  Research handbook on disability policy ● People with disability have a history of being subject to stigma and discrimination or have received poor health care in the past, which may mean that they do not ask for health care when needed (Palsbo, Mastel and O’Donnell, 2006). ● Poor accessibility of health services and health information (Davis, 2002). ● Some people with disability are more prone to health problems than other people (for example, 50% of people with Down Syndrome are born with heart conditions which must be remedied by significant medical intervention (Metzler, 2016)) but these additional health needs must be met in a health system where practitioners are poorly trained to support with people with disability. As this list shows, the poor health of people with disability can be seen to be both as a result of the individual circumstances of a person with disability and the social context in which health is enacted. To right this, we need medical practice to both zoom out from the body to understand the social conditions which impact disability but to zoom back in to the body to focus on health needs. Current disability policy approaches have acknowledged this need (e.g. Australia’s Disability Strategy (Commonwealth of Australia, 2021)), but action lags and is constrained by the structures of medical practice which have been built around centuries of practice. From this contemporary context I therefore want to go back to understand how medical practice evolved in relation to disability, the impact of those practices and attempts to address them through developing new international ways of knowing and speaking about disability.

HISTORY OF MEDICALISATION: FROM UNKNOWN TO THE DISCOVERY OF DISABILITY In this section I am going to map out a brief history of a relationship between medical practice and disability. I will show, by developing a narrative around classification, that disability is initially invisible to medical practice but becomes gradually known and acted upon, and then again hidden as medicine fails to act on and cure disability. I am taking some necessary short cuts in my narrative, but its purpose is to show the role of the invention of classification in medical practice in relation to disability, and some of the material impacts of this on the lives of people with disability. In doing so I am adding to recent work by Andrew Hogan (2019, p. 244) who argues that classification has been essential for “mediating relationships between individuals and social institutions”. The way we understand disability is firmly cemented in our social and cultural practices. In the European Middle Ages, while philosophers and theologians attempted to understand disability, the practice of medicine, as limited as it was, was not interested in “intractable, incurable conditions” (Metzler, 2016) and therefore had very little to say about most forms of disability (Scarborough and Scarborough, 2018). Those impairments that we now describe as disability were not of interest and therefore the people who experienced them were not widely subject to practices associated with medicine. Medicine at the time also lacked the concentrated power of an organised and regulated profession, with structured training through institutions. Medicine was simply “too decentralized to wield the institutional and discursive power that it has today” (Wheatly in Scarborough and Scarborough, 2018, p. 17). Metzler (2016) reflects on the dilemmas involved in “imposing modern definitions” of disability on our reading of the

Making disability known  541 past, given the specificity of time and place – what we see as possible references to disability in the medical texts of the Middle Ages may in fact be something else because these texts lacked a clear language for disability. If there was no language for disability, then no shared medical practices or discourses could arise and disability remained invisible to medical practice. Following from Carl Linneaus’s work to develop taxonomies of plants and animals in the 1700s a frenzy of classification developed which eventually made its way into medicine (Haendel, Chute and Robinson, 2018). By the mid-1800s this classification movement was gradually mopping up those areas that were less easy to classify by symptoms, including neurological and mental disorders. The practice of classification at this time is perhaps best illustrated in the work of the French neurologist Jean-Martin Charcot who described and defined the attributes of Charcot–Marie–Tooth disorder, which bears his name, and refined Parkinson’s disease and multiple sclerosis, thereby making these disorders known and developing a shared framework for the medical professions to discuss and act upon them. Charcot believed that a shared understanding of the attributes of disorders was needed so that treatment regimens could effectively develop. To this end he sought to create “a pure nosology” around which shared understanding and practice could develop, and which he believed was best represented in the diagnosis of hysteria (Didi-Huberman and Charcot, 2003). Around this time, in 1893, the International Statistical Classification of Diseases and Related Health Problems, the precursor to the International Classification of Diseases (ICD) and distant relation to the International Classification of Functioning, Disability, and Health (ICF), was first developed as an attempt to create a shared framework for accounting for diseases (Haendel, Chute and Robinson, 2018). It moved into usage as a common classification tool for health systems in the USA and Europe and from there gradually became the common language for disease internationally. Classification made disability knowable and visible to medicine and the existing practices of medical treatment. As noted, Charcot’s drive for classification came from his interest in creating shared knowledge for medical practice. Li (in Edquist, 2008, p. 380) describes the utility of diagnosis within medical practice as a formula which allows practitioners to “extract from all the messiness of the social world, with all the processes that run through it, a set of relations that can be formulated as a diagram in which problem (1) plus intervention (2) will produce (3), a beneficial result”. This formula was, and remains, the foundation for mainstream medical practice. Carlson’s work on the history of classification of cognitive disability provides an example of how this formula brought about a new way of acting on cognitive disability which brought successive radical shifts in medical practice in relation to people with cognitive disability. Carlson (1998, p. 1) writes that for cognitive disability: The period from 1850–1880 is generally considered a period of optimistic institution building, with the aim of “making the deviant undeviant”; from 1880–1900 there was growing pessimism, a shift to custodialism, to “sheltering the deviant from society”; and from 1900–1920 there was an attempt to “protect society from deviancy”, and the view of [cognitive disability] as a menace.

This trajectory shows that once cognitive disability had become known to medical practice through the classification work of practitioners such as Downs, Seguin and Grindley Howe, it became subject to the usual practices of medicine. However, because of the nature of cognitive disability, it rarely fit the ‘curative’ formula of medicine that Li describes above. This resulted in a change of practices towards care and control which saw people with disability increasingly sequestered within institutions or otherwise removed from society.

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A HISTORY OF PRACTICES – CONTAINMENT AND CONTROL In April 1919 my great uncle Harold Best was admitted at seven years of age to the Willowburn Epileptic Home in the Willowburn Insane Asylum in Toowoomba, Queensland, where he lived until his death at 22 (see Figures 45.1 and 45.2). His care was paid for by his father (who my grandfather didn’t like and, likely unfairly, believed that Harold’s problems were caused by his father dropping Harold on his head). Harold may have had a better time than many disabled people of that era. The operation of Willowburn, which later became the notorious Baillie Henderson facility, was at that time influenced by the ‘moral treatment’ practices of William Tuke, developed at the Quaker-run York Retreat in England. However, this choice was a matter of chance, left up to the decision making of the medical practitioners overseeing the facility, which was in this case Dr Henry Ellerton (Finnane, 2003). Choices about treatment were not the subject of “broad social policy” (Chenoweth, 2000), but were placed in the hands of the medical practitioners who were enabled by the state to use their professional judgement about practice regimes. This meant that people with disability, including people with mental illness, were subject to the decision making of individuals, whose authority was given to them by the state based on their professional qualification and whose fallibility was difficult, although not impossible, to question. This could cause the perpetuation of significant maltreatment through institutions, as demonstrated most clearly in the case of Dr Harry Bailie at Chelmsford Hospital in Sydney in the 1960s and 70s. Bailie’s conduct with respect to his treatment of choice – deep sleep therapy – was unable to be effectively questioned because of his power as a medical professional, whose status was as God both within the institution and in relation to other professionals, including policy makers (Walton, 2013). Another significant element in the perpetuation of poor practices during this period was the seclusion of people with disability from society, which meant that even as human rights discourses gathered pace in the period following the Second World War, people with disability were still sequestered away from both society and their families. My grandfather may be excused from thinking that his brother was dropped on his head when he never really met him. Of his very existence my grandfather was silent unless it was to have a dig at his father. People with disability were cared for and controlled and this happened within its own world, away from everyone else except in very limited circumstances where ‘select’ patients were paraded to the community (MacKinnon, 2009). They were an “invisible population” (Chenoweth, 2000, p. 79). The Willowburn Insane Asylum grew its own food, made its own clothing and was its own community, with sport, craft and entertainment created by and for its inmates. This environment may be considered on the face of it to be a good one, based on a strong set of values, but it was an environment cut off from the outside world. This was the subject of literally verdant prose by a Truth journalist in 1927, who wrote of the Willowburn asylum inmates: Of the sunlight and merriment of the outside world they know little. A motor-car passes, along the lonely, roadway; a horseman rides over the fields; a ploughman drives his team across the verdant acres which stretch out before the vision; a boy plods along behind; a slowly moving string of cows; as the evening shadows fall over the grassy meadows; and that is all they know of outside, liberty.

The medicalisation of disability engendered a characterisation of people with disability as in need of segregation, in this case into “…the Willowburn colony of exiles – the compulsory home of those pitiable outcast, beings, whose weak mentality has caused them to be segregated from the rest of the world” (The Truth, Sunday, 23 January 1927, p. 13). While cure was still

Making disability known  543 viewed as possible for a subset of patients, where medical treatment was not possible, care, containment and isolation from society were the only available options (Finnane, 2003).

Note: Copyright free image.

Figure 45.1

Willowburn Insane Asylum c.1905, State Library of Queensland

In relating this history of disability and classification and its consequences I am indulging in an oversimplification to construct a narrative from a very complex relationship. My oversimplification has a purpose, however, because it is against this hegemonic narrative of the extreme consequences of the medical model of disability that counter-narratives of disability rights emerged. The most extreme situations make the best arguments for action and then result in a change to the frames from which policy makers can act. The situation of people with disability living away from society in institutions once brought to light and framed against the burgeoning discourse of human rights resulted in a change to the way that policy for disability was conceptualised (and, down the track, to how disability was classified, thereby perpetuating these new frames, as I shall argue later).

DISABILITY RIGHTS AND RESISTANCE As indicated in its name, the disability ‘rights’ movement, like the civil rights movement before it, was heavily influenced by human rights discourses (Chenoweth, 2000). Civil rights promoted the validity of the experiences and voices of marginalised groups, and this gave rise

544  Research handbook on disability policy

Note: Copyright, the author.

Figure 45.2

Close up of file card for Willowbank patient, Harold Vincent Morrow Best, for period 1919‒1934

to disability self-advocacy and lived experience activist movements. Within this collective organising human rights were key, as evidenced in the discourse of disability rights organisations such as the Disabled Peoples International (Australia) organisation in 1983 (Newell, 1996). The push for deinstitutionalisation from the late 1960s went hand in hand with the disability rights movement. The movement sought visibility and was underpinned by the vision of an open society and the concept of normalisation. Chenoweth (2000, p. 83) positions normalisation as “located within rights discourses and argues that providing people with disabilities with the same life conditions as everyone else in society is essentially a human rights issue”. This directly challenged the medical model’s classification of a person with disability as abnormal but incurable through bodily disorder and its resulting failure to address the material needs of people with disability (Bickenbach, 2009). The medical model therefore became framed within the disability rights movement as a significant contributory factor in the denial of human rights through institutionalisation and restrictive practices (Hogan, 2019). In 1975 the UN Declaration of the Rights of Disabled Persons – the precursor to the current Convention on the Rights of Persons with Disabilities (CRPD) – was released. This international declaration was a key turning point in disability care and treatment and, with further emphasis in the 1981 UN International Year of Disabled Persons, can be seen as a key impetus for increasing policy discussions surrounding deinstitutionalisation and the move of people with disability from a setting of care and control in institutions into the community (Chenoweth, 2019). In Australia sets of enabling legislation and policy based on the values of normalisation followed, including the Disability Services Act (1986) (Chenoweth, 2000; Stancliffe, 2014). International organisations – primarily the World Health Organization and its parent organisation the United Nations – have become the site for formalisation of human rights.

Making disability known  545 The international organisations in the ‘UN family’ have little direct power, but instead utilise the weight of their organisational prestige to press for change by member states. As I have argued elsewhere, the power of international organisations within the UN family largely arises from their ability to mobilise knowledge (Sturdy, Freeman and Smith-Merry, 2013). One of the ways that they do this is through the creation of shared ways of knowing and shared languages for understanding and communicating about health and disability, such as the ICD or the ICF, and global burden of disease metrics such as the disability-adjusted life year (DALY). Human rights frameworks, exemplified by the CRPD, articulate shared expectations of individual freedom and dignity and address key areas that enable individuals to live their lives. Human rights approaches are notable for their self-declared universality, which allows them to be taken up as a shared object for use in legal systems internationally. However, human rights, as with the knowledge of international organisations generally, only takes on direct power when it is formalised within the regulatory arrangements of individual states through legislation and other state mechanisms of power. This does not happen extensively in Australia, and when it does the principles are rarely clearly articulated. For example the Northern Territory Mental Health and Related Services Act (1998) aims to be “consistent with the United Nations’ Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care”, which themselves are aligned with UN human rights declarations and covenants. However the Act skips over some of the key principles, including those relating to community and culture, which are essential for ensuring human rights in the context of the Northern Territory where there are significant intersections between culture and disability that must be met to assure the human rights of Aboriginal people (Avery, 2018). The context of this enactment of human rights is likewise integral to the manifesting of human rights frameworks for policy. The policy context from which disability rights are enacted is essential to the outcomes for people with disability. Freeman (2017, p. 10, emphasis in original) has argued that mainstream narrow approaches to human rights, such as that of legal positivists, follow a tradition where the “point of human rights has historically been to criticize legal authorities and laws that violate human rights”. Taking this into policy leads to ‘tick-box’ or tokenistic approaches, where human rights are reduced to a set of indicators of success but are removed from broader change. It also leads to a segmenting of rights-based approaches which ignores the multilayering of disadvantage and discrimination. This leads to poorer health outcomes, for example, for children with disability, who should ideally have their rights supported by the Convention on the Rights of Children (CRC) (Lundy, Kilkelly and Byrne, 2014, p. 331). Instead, children with disability are in danger of having their rights ticked off against one framework and then another, without considering their intersectional position which leads to a layering of disadvantage. This means that policy must be formulated to move beyond box-ticking of rights met, to address the context in which rights-based approaches are enacted – contexts which might mean that rights-based discourses are less effective for some groups than others. It also necessitates a broad view of disability policy which starts from the standpoint of inclusion and equity to explicitly address stigmatised cultural beliefs about disability and the capabilities of people with disability (Lundy, Kilkelly and Byrne, 2014). Lundy et al. (2014) argue that a progressive approach such as this is enabled by the CRPD in a way that is not possible in other international human rights conventions such as the CRC, and the CRPD’s utility in this respect has become a vehicle for advocacy and disabled peoples’ organisations when entering policy

546  Research handbook on disability policy debates (Australian Civil Society CRPD Shadow Report Working Group, 2019). However, as demonstrated in the example of the Northern Territory mental health legislation cited above, human rights-based claims often fall short when enacted. Enacting the CRPD in policy also needs to address one of the key critiques of the universality of human rights approaches, which is of the ‘individualised’ approach to human rights in the UN CRPD being at odds with cultural contexts which focus less on the individual or conceptualise ‘disability’ in culturally specific ways which are seemingly at odds with the CRPD. The UN CRPD does acknowledge the contextual nature of disability and human rights: disability is an evolving concept and … results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. (Convention on the Rights of Persons with Disabilities, United Nations, 2006)

It has been argued that critiques of individualisation can be overcome through an appeal to cultural respect and understanding to work through differences and consider “progressive realisation” towards universal human rights that is respectful of different cultural and political contexts (Bickenbach, 2009, p. 1120). What is needed is a strong engagement with the discourse of human rights in health policy so that a clear plan for the realisation of disability rights is put in place. However, disability policy implementation plans rarely encompass this strategic use of human rights discourses.

THE INTERNATIONAL LANGUAGE OF COUNTING AND CLASSIFICATION As I have argued throughout this chapter, shared languages facilitate shared action and the way we classify disability is integral to the way we speak and act on disability. In this section of the chapter, I turn to the World Health Organization’s (WHO) ICF to understand how this contemporary classification of disability developed in relation to both the history of practices of the medicalisation of disability and human rights. The ICF was ratified at the 54th World Health Assembly in May 2001, with a Children and Youth version subsequently published in 2007. A classification of functioning with international applicability was mooted as a way of dealing with significant issues related to the existing International Classification of Impairments, Disabilities and Handicaps (ICIDH) which was viewed as too enmeshed within medical practice and its attendant model and practices of disability. Ideally, a classification which focuses on functioning is agnostic to diagnosis and attendant cultural and contextual trickiness around the application of those diagnostic categories. The WHO considers functioning in the context of the individual, thereby aligning itself with a ‘person’ or ‘people’-centred approach (World Health Organization, 2007) and therefore addresses the concerns about the dominance of Western individualised cultural conceptions of disability. A classification of functioning is able to deal with the problems associated with the use of diagnostic pathways whereby people with a certain type of diagnosis (e.g. schizophrenia, autism) may receive similar treatment approaches to others with the same diagnosis despite having potentially very different severity levels or symptoms. One person with autism may be non-verbal and need considerable workplace support and adjustments, where others may be able to function with minimal support within mainstream employment, or be a pre-

Making disability known  547 ferred employee group (e.g. software companies that have a preference for employees with autism). Conversely, people with different diagnoses may have very similar functional needs (Bickenbach, 2009). The ICF was developed in tandem with the UN CRPD (Bickenbach, 2009) and arose from a parallel set of concerns, whereby people with disability were seen largely in relation to their diagnosis and this created barriers to inclusion. Within the development of both of these frameworks, the medical versus social model debate played a very prominent role (Degener, 2016; Hogan, 2019; Bickenbach, 2009). Degener (2016, p. 4) argues that the human rights model eventually enacted in the CRPD extends and enables the social model; where “the social model merely explains disability, the human rights model encompasses the values for disability policy that acknowledges the human dignity of disabled persons”. In the development of the CRPD the medical model was positioned as the antithesis of what those drafting the convention wanted to achieve (Degener, 2016). The CRPD needed to be visualised as enacting disability policy frameworks that avoided the biological determinism and attendant social practices of the medical model. Parallel arguments took place in the development of the ICF, but where in the CRPD the medical model was discarded, and the social model was a “stepping stone” (Degener, 2016, p. 4) to the human rights model, the ICF achieved more of a middle ground between the social and medical models (Hogan, 2019). This ‘middle ground’ can be seen in the language of the World Health Assembly, which describes the relationship between functioning and disability as arising from a matrix formed of “body functions and structures, activities and participation … as well as their health conditions” (Madden et al., 2015, pp. 5816‒17). Functioning in this context does not deny the lived reality of impairment, but understands this in relation to “the physical, human-built, socio-cultural, attitudinal and political environment” in which the individual is situated (Bickenbach, 2009, p. 1112). This approach clearly brings to the ICF elements of the social model of disability, while still addressing the reality of bodily impairments. Hogan (2019) describes the medical model as looming large within debates and action to reform the ICIDH and the deliberations for the ICF. While the ICF did move towards the social model, it was argued that as the ICF was a health classification tool, to be used by health practitioners within the context of health systems it could not, therefore, completely do away with a focus on the body and health (Hogan, 2019). The ICF therefore gradually pushes medical practice away from the traditional diagnosis-treatment-cure pathway but does so within the overall existing frameworks of medical knowledge. Some lived experience activists involved in the process acknowledged the “compromise” (Hurst in Hogan, 2019) that went into the development of the ICF and promoted it as an important step forward. Others argued that the reframing did not go far enough, positioning it as a “rebadging of the discredited International Classification of Impairments, Disabilities and Handicaps” (Shakespeare, 2013, p. 79). Shakespeare (2013) rejects this criticism, arguing that the ICF considers the locus of disability as being in both the individual impairment and the individual’s environment. The ICF radically frames the concept of universalism as applying to everyone, not just those with disability, but every one of us who “is at risk of impairment and its consequences” (Shakespeare, 2013, p. 79).

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CONCLUDING THOUGHTS ON THE ICF AND ITS IMPLEMENTATION IN POLICY The ICF has been put to work as a shared international language for classifying and counting disability. Classifying and counting are key practices of policy which allow for governments to understand populations, develop goals and structure frameworks for action. In disability policy classification also becomes a gatekeeping mechanism which can mean access to a scheme or funding source if an individual is sufficiently functionally impaired. The functioning of the ICF in this respect in contemporary Australian disability policy is best demonstrated by its recent use in relation to the National Disability Insurance Scheme (NDIS). The NDIS is a national scheme which provides personalised budgets to people with disability which can then be used to purchase supports to meet disability-related needs in order to “support the independence and social and economic participation of people with disability” (Commonwealth Government, 2013). In 2020 and 2021 independent assessments were trialled as part of the scheme design in order to assess scheme eligibility and individual budgets. This trial utilised the ICF as the framework for developing this assessment framework (NDIS, 2020). The trial of the independent assessments framework and the role of the ICF assessment framework within the trial were roundly criticised by the scheme users involved in the trial and the broader disability advocacy community, mainly because it is not possible to assess functioning without an understanding of the individual as a person. This example shows that the ICF on its own is not able to create a shared language of action. The language only becomes meaningful if it is enacted in an overall environment where the human rights of people with disability are respected. As the current Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability so clearly shows, this is not the case in Australia, though the frameworks of the ICF and the UN CRPD provide us with a frame from which to continue to question and drive disability policy. Similar dilemmas accompany the current attempts in some Australian states and territories to move school-based disability funding assessment to a framework based on functional needs. Those attempts must consider what Australian schools and education systems provide as a context for the implementation of functional needs-based approaches. Language and classification systems can only then be seen as useful tools as part of an overall policy framework which addresses the dominant disability frames which shape the experiences of people with disability.

REFERENCES Australian Civil Society CRPD Shadow Report Working Group. (2019). Disability Rights Now 2019: Australian Civil Society Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities. UN CRPD Review 2019. https://dpoa.org.au/wp-content/uploads/2019/08/CRPD ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -Shadow-Report-2019-English-PDF.pdf ​ ​ ​ ​ ​ Avery, S. (2018). Culture is Inclusion: A Narrative of Aboriginal and Torres Strait Islander People with Disability. Sydney: First Peoples Disability Network. Bickenbach, J. (2009). Disability, culture and the UN Convention. Disability and Rehabilitation, 31(4), 1111–1124. doi:10.1080/09638280902773729 Carlson, A. (1998). Mindful Subjects: Classification and Cognitive Disability. Doctoral Dissertation, University of Toronto. Chenoweth, L. (2000). Closing the doors: Insights and reflections on deinstitutionalisation. Law in Context, 17(2), 77–100. https://assets.ctfassets.net/hszr9c7mxtcf/7LUE15u7jIY81Qeeq86INC/ ​ ​ ​ ​ ​ ​ ​ ​

Making disability known  549 379​aa0cec69c5​9fad6d52dd​493877f26/​A​_brief​_history​_of​_the​_the​_disability​_services​_sector​_in​ _Australia​.pdf Chenoweth, L. (2019). A Brief History of the Disability Services Sector in Australia: 1992–Present Day. Newcastle: Life Without Barriers. Commonwealth Government. (2013). National Disability Insurance Act (2013) (Cwlth). Commonwealth of Australia. (2021). Australia’s Disability Strategy 2021–2031. https://​www​ .disabilitygateway​.gov​.au/​sites/​default/​files/​documents/​2021​-11/​1781​-australias​-disability​.docx Davis, J. J. (2002). Disenfranchising the disabled: The inaccessibility of Internet-based health information. Journal of Health Communication, 7(4), 355–367. Degener, T. (2016). Disability in a human rights context. Laws, 5(3), 35. doi:10.3390/laws5030035 Didi-Huberman, G., & Charcot, J.-M. (2003). Invention of Hysteria: Charcot and the Photographic Iconography of the Salpêtrière (A. Hartz, Trans.). Cambridge, MA: MIT Press. Edquist, K. (2008). Globalizing pathologies: Mental health assemblage and spreading diagnoses of eating disorders. International Political Sociology, 2, 375–391. Finnane, M. (2003). The ruly and the unruly: Isolation and inclusion in the management of the insane. In C. Strange and A. Bashford (Eds.), Isolation: Places and Practices of Exclusion (pp. 83–96). London: Routledge. Freeman, M. (2017). Human Rights (3rd edn). London: John Wiley & Sons. Haendel, M. A., Chute, C. G., & Robinson, P. N. (2018). Classification, ontology, and precision medicine. New England Journal of Medicine, 379(15), 1452–1462. Hogan, A. J. (2019). Moving away from the ‘medical model’: The development and revision of the World Health Organization’s Classification of Disability. Bulletin of the History of Medicine, 93(2), 241–269. Lundy, L., Kilkelly, U., & Byrne, B. (2014). Incorporation of the United Nations Convention on the Rights of the Child in law: A comparative review. In M. Freeman (Ed.), The Future of Children’s Rights (pp. 331–350). Leiden: Brill. MacKinnon, D. (2009). Australian asylums and their histories. Health and History, 11(1), 128–148. Madden, R. H., Glozier, N., Fortune, N., Dyson, M., Gilroy, J., Bundy, A., Llewellyn, G., Salvador-Carulla, L., Lukersmith, S., Mpofu, E., & Madden, R. (2015). In search of an integrative measure of functioning. International Journal of Environmental Research and Public Health, 12, 5815–5832. Metzler, I. (2016). Fools and Idiots? Intellectual Disability in the Middle Ages. Manchester: Manchester University Press. NDIS. (2020). Independent Assessments Framework. Canberra: National Disability Insurance Agency. Newell, C. (1996). The disability rights movement in Australia: A note from the trenches. Disability and Society, 11(3), 429–432. doi:10.1080/09687599627705 Oliver, M. (1990). The Politics of Disablement. Basingstoke: Macmillan and St Martin’s Press. Palsbo, S., Mastel, M., & O’Donnell, L. (2006). Disability care coordination organizations improving health and function in people with disabilities. Lippincott’s Case Management, 11(5), 255–264. Rimmer, J. H. (2002). Health promotion for individuals with disabilities. Disease Management & Health Outcomes, 10(6), 337–343. Scarborough, C. L., & Scarborough, C. (2018). Viewing Disability in Medieval Spanish Texts. Amsterdam: Amsterdam University Press. Shakespeare, T. (2013). Disability Rights and Wrongs Revisited. Abingdon: Routledge. Stancliffe, R. (2014). Inclusion of adults with disability in Australia: Outcomes, legislation and issues. International Journal of Inclusive Education, 18(10), 1053–1063. doi:10.1080/13603116.2012.6933 95 Sturdy, S., Freeman, R., & Smith-Merry, J. (2013). Making knowledge for international policy: WHO Europe and mental health policy, 1970–2008. Social History of Medicine, 26(3), 532–554. Tosh, G., Clifton, A., Xia, J., & White, M. (2014). Physical health care monitoring for people with serious mental illness. Cochrane Database of Systematic Reviews, 1, CD008298. Truth’s Special Representative (The Truth). (1927). Matron Conway Denies all Charges of Cruelty. The Truth, January. United Nations. (2006). Convention on the Rights of Persons with Disabilities. Treaty Series 2515, December(3).

550  Research handbook on disability policy Walton, M. (2013). Deep sleep therapy and Chelmsford Hospital: Have we learnt anything? Australasian Psychiatry, 21(3), 206–212. World Health Organization. (2007). People-Centred Health Care: A Policy Framework. Manila: WHO Western Pacific Regional Office.

46. Disabilities, evidence-making and quality of life: the three core human rights principles framework Luciano Bottini Filho

INTRODUCTION Human rights have a troubled relationship with numbers and indicators. A recent “turn to metrics” for the monitoring of human rights compliance has received both support and criticism (Green 2001; Heymann et al. 2015; Hunt and MacNaughton 2007; Langford and Fukuda-Parr 2012). One basic question is whether metrics can encapsulate the content of rights and track the obligations that states must meet. Similarly, the discussion of the accuracy of evaluation tools (such as quality of life) is important for disability policies, but it is complex. Clinical research and economic models may use information that does not reasonably describe the experience of disability and aspects of life important for those who live with it (Mont 2007). As a result, a quality of life (QoL) “translation problem” in clinical evidence and economic models may distort or undervalue the experiences of people with disabilities, leading to unfair procedures and discrimination in public policies. For instance, young people in wheelchairs may not find items in standard surveys that reflect their concerns about their abilities, especially in terms of mobility (Bray et al. 2017). As I argue in this chapter, international human rights norms propose three core principles that foster fair evidence-making in public policies: non-discrimination, fair procedure, and progressive realisation. This framework sets out the state obligations regarding clinical and economic evidence involving the measurement of health-related quality of life (HRQoL). Whilst not specific to people with disabilities alone, the three core principles may prevent unfair decision-making based on inappropriate evidence that excludes vulnerable groups. This chapter comprises four parts. The first describes the importance that international human rights law attributes to evidence-based policies in general and which can be extended to QoL metrics. The second examines the detrimental effect of QoL metrics which have only rarely been examined as human rights issues in international law documents on disability policies. The third part addresses the methodological problems with measuring QoL in relation to economic decisions. The final part lays out a framework of a human rights-based approach to evidence-making, using the three core principles to focus on indicators of QoL to ensure the participation and equal consideration of people’s lives. The main argument is that if research on the values and aspirations of people with disabilities is not already available, states have a positive obligation to produce this and develop instruments that measure QoL, whilst avoiding discrimination and ensuring fair procedures.

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1.

HUMAN RIGHTS AND THE ROLE OF EVIDENCE IN POLICYMAKING

This section explains why evidence is central to international human rights, even though current norms do not directly address QoL measurement tools. Although the policies and outcomes of a human rights-based approach are “evidence-based”, the requirements for evidence are set by researchers and the scientific community.1 As this section shows, international human rights practice has only partially addressed the role of evidence, and has done so in ways that do not sufficiently question the suitability of QoL metrics. This means that the actual technical quality and representativeness of policy evidence for certain groups – such as people with disabilities – are not cited in human rights standards. One example of this paradox, where human rights endorse good quality evidence but do not question its compatibility with human rights principles, is evidence-based medicine. The Committee on Economic, Social and Cultural Rights (CESCR) has been inclined to associate quality in healthcare with evidence-based medicine, as exemplified by its comments on reproductive rights.2 In evidence-based medicine, researchers must apply a strict scientific method to evaluate the quality of research produced, and this is not determined by human rights norms (Rogers 2004). Likewise, the former Special Rapporteur on the Right to Health, Dainius Pūras, afforded great weight to evidence-based medicine in public policies but did not indicate the conditions needed for this to comply with human rights. Pūras’ report suggests that a human rights-based approach is compromised if decisions regarding public health depart from scientific knowledge, particularly if this is a result of a power imbalance between political groups or private interests.3 Such imbalances, he argued, are related to procedural fairness (“lack of transparency, accountability, and political will to follow established principles and standards”).4 Yet, this argument seems to refer only to how scientific evidence is overlooked by governments, rather than how evidence-based medicine is researched or whether it follows patient values. Whilst human rights law encourages evidence-based medicine, it is known that it does not always provide the best evidence for people with disabilities. Though evidence-based medicine is designed to shape policy decisions as a triad-balance between research evidence, clinical expertise, and patient values, people with disabilities may find their views are not considered in all forms of evidence-based policies (e.g. research designs that do not consider the gains in wellbeing that are valued by this population; Sackett et al. 1996; Schlegl et al. 2017). Occasionally, non-observance of evidence-based health policies is an issue raised by human rights mechanisms, but the role of patient values is not discussed and the focus is typically on the production of statistical and disaggregated data.5 The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) recognised the duty to “collect appropriate information, including statistical and research data, to enable them to formulate and implement policies” (Article 31), but this seems to be primarily intended for human rights impact assessments and the monitoring of Convention obligations, including appropriately disaggregated statistics and demographic data.6 The WHO’s International Classification of Functioning, Disability and Health (ICF) has been strongly endorsed by human rights statements and quoted in monitoring reports, but this seems to be primarily related to census or demographic statistics, rather than clinical trials and economic measurements.7 However, when developing new health technologies and cost-effective analysis, countries may need to adopt separate standards for special interventions, including assistive technol-

Disabilities, evidence-making and quality of life  553 ogies and medical devices (Blüher et al. 2019; Wamala et al. 2021). For those purposes, evidence can become discriminatory if the available research is inappropriate for the specific circumstances of a group of patients. In certain cases, a requirement for rigorous controlled experiments can be unethical, because either there is evidence of efficacy by other means or the study would cause unnecessary deaths – as in the case of the modified heart-lung machine for neonates (Schulte 2020; Wolfson 2003). In mental health, Pūras is more critical of the role of evidence normally influenced by standards only met by the pharmaceutical industry. He notes that evidence should be integrated with practice and patient preferences, observing that “reliance on clinical trials … may skew treatment recommendations towards drugs”.8 The report also recognises the need for local evidence-production in order to avoid overlooking relevant practices and standardised guidelines that might not be culturally and economically appropriate for a specific region.9 One common occurrence is that a treatment is not the best available option from the patient’s standpoint but simply has the best evidence in the hierarchy of research (Day 2017; Gaeta and Gentile 2016; Jones and Sagar 1995). Thus, although human rights guidance has primarily pursued evidence-production for the monitoring of the implementation of rights obligations (e.g. access to services), it may be argued that technical metrics supporting decisions – including QoL measures – should be directly determined by people with disabilities as well.10 In relation to the monitoring of human rights implementation, the General Comment No. 6 on Equality and Non-Discrimination notes that “the design, collection, and analysis of data should be participatory, i.e., undertaken in close and meaningful consultation with representative organizations of persons with disabilities”.11 In practice, this means that people with disabilities may send communications or provide oral submissions by self-representation to ensure policy decisions are complemented by views not expressed in current research. Beyond international human rights statements, academics have been discussing how to incorporate a human rights dimension into evidence-based policies, but there has been little consideration of human rights standards on evidence-production alone. The World Health Organization (WHO) INTEGRATE framework was released in 2019, suggesting to cover this latter consideration (Rehfuess et al. 2019). Commissioned by the WHO, the framework was an attempt to harmonise evidence-based decisions with UN and WHO norms and values, with an emphasis on the decisions of the CESCR and General Comment No. 14 on the right to health (Stratil, Baltussen et al. 2020; Stratil, Paudel et al. 2020). It proposes that “all recommendations should be under universal human rights standards and principles” and interventions with higher equity effect should have a better chance of approval (Rehfuess et al. 2019: 12). Similarly, de Londras et al. developed their human rights-evidence framework in response to WHO-INTEGRATE, with a comprehensive analysis to determine the evidence required for the relevant human rights standards in healthcare (de Londras et al. 2021). However, these two approaches mentioned do not involve modifying methods of research that could be regarded as discriminatory against people with disabilities (including QoL measurement). Both templates are procedurally problematic and make no provisions for producing evidence to redress the lack of data and include the views of people with disabilities.

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2.

DISABILITIES AND HEALTH-RELATED QUALITY OF LIFE: HUMAN RIGHTS TENSIONS

This section will first delimit the issues with QoL measures that could be regarded as human rights violations affecting people with disabilities (and which have not received much attention as such). In terms of human rights compliance, the approaches taken in studies on QoL may be too narrow to correspond to the full spectrum of human rights obligations, which are interdependent and entail multiple life dimensions beyond health states (Brazier et al. 2019: 64–5). This section will first discuss the discriminatory impact of QoL measures, which will also be important later in this chapter for understanding discrimination in economic analysis. By its nature, QoL is a subjective assessment, defined by the WHO as “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO-QoL Group 1997: 1). Measuring QoL as a health outcome can invoke value-laden concepts of justice, wellbeing, and patient autonomy (Harteloh 2004; Michaels 2021). Such concepts may concern people with disabilities’ experiences of daily tasks, taking part in social activities, making decisions independently, and feeling their rights are equally respected (Verdugo et al. 2012). A common cause of unsuitable clinical evidence-making is not reporting on more relevant outcomes, such as independence and social integration (Davidson et al. n.d.). More frequently, QoL is measured narrowly in relation to HRQoL. The methods used to calculate the “amount” of health of an individual or population (roughly denominated as health status) vary depending on the approach and factors considered (Bergner and Rothman 1987). The most commonly used are individual functioning, factors that affect health, health circumstances influencing QoL, and the assigned value of a health state by the public. Regardless of objective quantitative measures of physical conditions and impairments, there is always a subjective evaluation, and people with disabilities weigh their HRQoL differently to other patients – indicating higher scores for QoL despite their disabilities (Hays et al. 2002: 36; Kaplan and Baron-Epel 2003; Ubel et al. 1999). Therefore, HRQoL is measured via an evaluation process that depends on who is conducting or participating in the study and the questions asked. This can be determined through profile surveys (where patients report their health states) and a process called “preference-based measures”, which does not correspond to free preferences because the possible answers are decided by a pre-defined questionnaire (Devlin n.d.). Research on HRQoL involves standardised surveys of health profiles and preference-based outcomes, such as the WHOQOL-BREF, SF-36, and EQ-5D (Fayers and Machin 2013). Depending on how a survey is designed, standardised methods may penalise those who have impairments, in favour of the rest of the population (Greenhalgh et al. 2014). Not all aspects of these instruments correspond to the items contained in the ICF, in relation to special environmental factors, body functions, and activities concerning mobility (Cieza and Stucki 2005). Using parameters applicable for the whole population, QoL surveys give lower scores to people with disabilities, meaning their lives consequently “count for less” if they lack some functionality (such as being able to see or walk). A person with autism may have their life valued at 80 per cent of that of a non-disabled person because of their cognitive impairments (National Council on Disability 2019). This disadvantage results from disabilities being seen by the public as objectively reducing QoL, which contradicts the perceptions of those directly experiencing them (Wieseler and Philosophy Documentation Center 2016). Adaptation and

Disabilities, evidence-making and quality of life  555 this more positive attitude than that of the general population are some of the explanations for the different views among people with disabilities (Menzel et al. 2002).

3.

DISABILITIES, QUALITY OF LIFE, AND ECONOMIC DECISIONS (QUALITY-ADJUSTED LIFE YEARS AND DISABILITY-ADJUSTED LIFE YEARS)

As metrics of HRQoL remain methodologically contentious, the constraints explained thus far are carried over into health economics evaluations as potential human rights violations. Hence, one argument for QoL being a significant concern for human rights is the manner in which prioritisation decisions disadvantage people with disabilities. HRQoL studies are used to reach utility scores in cost-effectiveness analysis, a method criticised as incompatible with non-discrimination and fair procedure (Gold et al. 2002). These utility scores may reduce people’s power to report the outcomes they regard as important in their lives, discriminating against them based on evidence that does not reflect their individual health needs and status. Those models of cost-effectiveness of health investments commonly employ quality-adjusted life years (QALYs), converting HRQoL scores into annual utility (a unit of preference). Some say that although there are ethical problems with using cost-effectiveness analysis in itself, QALYs are problematic for people with disabilities because of the way in which HRQoL is created (Whitehurst and Engel 2018). Invalid HRQoL may disregard the specific values of patients with disabilities, which disenfranchises them and prevents participation and fair procedure (Directorate-General for Health and Food Safety [European Commission] 2019). When evidence is produced for fully able patients, others may be barred from highlighting their own account of QoL, penalised for not having the same QALYs as average individuals, and find their disability-specific gains not reflected by the scores (Hyry et al. 2014). As different HRQoL methods may report varied dimensions of health – and the translation of those health states into utility values is not consistent in its weighting of the attributes – there can be great inconsistency and unreliability between surveys (Mortimer and Segal 2008). However, on the surface, QALYs treat all individuals equally (formal equality), as the same unit is used for all groups of people. In practice, however, this is not true, as the scores are higher for groups enjoying more years in full health and the HRQoL assessments are lower in patients with disabilities (Bognar 2011; Hyry et al. 2014). Discrimination is one reason why QALYs are not well accepted in jurisdictions such as Germany and the United States, where they are regarded as unlawful (Kluger et al. 2020; McKenna and Smith 2020). The Affordable Care Act, which regulates affordable insurance in the United States, prevents the use of QALYs by the economy evaluation body established by the same law (the Patient-Centered Outcomes Research Institute).12 Commentators have also noted that QALYs are linked to various forms of indirect discrimination, in that they do not give equal opportunities for every person if the treatment is only provided to those who have better cost-effectiveness results (Bognar 2010: 396–7; Harris 2005: 374). Whilst QALYs have been misleadingly accepted as promoting “social preferences or values”, it may be that in reality only people with disabilities are in a position to determine their QoL. As a result, they may assign more value to life-saving treatments (Cupples 2020; Michaels 2021; Ubel et al. 1999).

556  Research handbook on disability policy However, the limitations mentioned so far are recognised only rarely in the human rights community – and sometimes incidentally in broader discussions of the dominance of economists and discrimination by biased criteria used in allocating budgets (Yamin and Boghosian 2020). Niada-Avshalom states that some economic indicators may collide with human rights when used to justify decisions that are based on the aggregate value of an intervention, do not consider individual rights, or are disadvantageous to a particular group such as the elderly (Niada-Avshalom 2015). In global health, as described by Davis, cost-effectiveness has become central to the investment decisions of donors, pitting populations against each other and preventing comprehensive analyses of factors not incorporated into economic research, creating an “epistemic silence” on matters valuable to specific populations (Davis 2020). Remarkably, in international human rights documents, there are few recommendations for the use of cost-effectiveness and utility indicators concerning disability. More recently though, the former Special Rapporteur on the Rights of People with Disabilities criticised utility metrics as “controversial for the ethical implications of the disability weights and their impact on policymaking” but did not elaborate on how to prevent discrimination.13 In this regard, disability weights (reductions in QoL) are used in global health policies to calculate disability-adjusted life years (DALYs). Conceptually, DALYs are complementary to QALYs, but instead of determining the additional utility to a patient, they measure the loss in life years, adjusted by co-morbidities and reductions in QoL regarding the disabilities (Arnesen and Nord 1999). This instrument is generally used in global health policies to calculate the burden of disease and define the healthcare priority areas of a population. One life year can be measured as between 1 (full health) and 0 (death), with losses of QoL discounted as “disability weights”, estimated by the WHO since 1996 and periodically updated. Disability weights can be quantified using different methods, such as converting the previously cited HRQoL instruments and calculating the period in a negative health state, as well as by expert panels and through direct preference elicitation (in which participants compare different health states and choose the preferred option or make trade-offs; Haagsma et al. 2014: 2–3). People with disabilities can be particularly disadvantaged by policy decisions that adopt DALYs. One critique is the discriminatory effect of the DALYs’ weighting, where the additional life years of individuals in this group are considered less valuable, as with QALYs (Rapley 2003). However, a key problem of disability weights is that they fail to reproduce the barriers met by people with disabilities in functional terms – how the individual’s functioning is limited by an environment (Mont 2007). In certain ways, DALYs guide prioritisation in public health interventions from a non-disabled perspective and do not emphasise the gains in functioning produced by other forms of investment. A typical example is children born with disabilities and needing assistive technologies or social support, including special education professionals and parental guidance. Those who advocate for DALYs maintain that they are necessary for estimating the effects of disabilities on populations, but others state that the weights are too subjective and cannot be accurately determined by people without disabilities (Mont 2007; Wildeman 2013). There is also procedural unfairness due to the lack of reproducibility and validity of different methods of obtaining disability weights, which are inconsistently applied in different studies. It is still contentious how to best set out these disability weights, as it remains unclear whether people who experience illness tend to consider their disabilities less burdensome than the rest of the population does (Haagsma et al. 2014).

Disabilities, evidence-making and quality of life  557

4.

THE THREE CORE PRINCIPLES: HOW DOES A HUMAN RIGHTS-BASED APPROACH WORK TO MEASURE QUALITY OF LIFE?

Having covered the main concerns in relation to QoL and human rights in research studies and economic evaluations, we will now discuss the potential for human rights mechanisms to improve QoL metrics for people with disabilities. We have seen that international human rights law is largely indifferent to QoL instruments, but that does not mean that there are no principles able to enforce more suitable evidence standards. This section will review the content of the three core principles of fair procedure, non-discrimination, and progress realisation in a human rights-based approach to evidence-making and their implications for clinical or economic indicators involving people with disabilities and QoL. Following that, the three core principles will be described in terms of their interaction in practice and how they guide policy decisions on standards of evidence in policymaking and current measurements of QoL for people with disabilities. The logic of the three core principles is a simple and mutually enforceable three-pronged relationship. Evidence should be produced in an accountable and transparent way (fair procedure) to avoid bias and disadvantage to specific groups (non-discrimination). If no research tools are available, states must take positive steps to adapt evidence to meet the first two principles, what is known as “progressive realisation”. The first principle encompasses concepts of accountability, public participation, and transparency in governance.14 In decision-making, fair procedure is a central plank of human rights implementation; and even though the principle has been more explicitly applied to civil and political rights, international human rights bodies and scholarship recognise its importance for socio-economic rights (Yamin and Lander 2015). In fact, there is a consensus amongst scholars that resource allocation decisions (which predominantly use clinical and economic evidence) should be part of a fair deliberative process (Rumbold et al. 2017; Yamin and Norheim 2014, 2020). The CRPD, though, is unique among human rights treaties in openly embracing the principle of participation in public policy decisions (which was applied even in its drafting process; Arduin 2018). This principle allows people with disabilities to directly intervene in and influence the production of evidence about their QoL, with citizen participation in deliberations considering the evidence produced. Finally, progressive realisation is fundamental to assessing the implementation of socio-economic rights, as prescribed by Article 2.1 of the CESCR. Under this rule, states should continuously strive to ensure the highest levels of rights’ enjoyment (Corkery and Saiz 2020). Thus, progressive realisation demands sustained measures of patient-centred metrics, whilst generic instruments disadvantage people with disabilities in decision-making. According to progressive realisation, by recognising health and economic indicators as estimations prone to mischaracterisations, a state can take appropriate steps to prevent unfair procedure or discrimination. The role of progressive realisation is to improve evidence-making in those epistemic gaps and develop the resources to collect relevant clinical and economic information, primarily where there are no appropriate methods or where more policies to ensure the participation of affected populations are necessary.15 In certain cases, and for many countries, there will be very limited data on some parts of the population (and for specific contexts), especially when new technologies have only recently been approved (see e.g. Hollingworth et al. 2020: 9–12).

558  Research handbook on disability policy If the three core principles are not immediately complied with, the principles of non-discrimination and fair procedure will trigger progressive realisation in evidence-making. For example, as alternatives to biased evidence, neutral and patient-specific approaches are preferred (e.g. HRQoL instruments adapted to specific disabilities or designed to cover people with disabilities in general, such as the WHOQOL-DIS; Bredemeier et al. 2014; Rowen et al. 2017). Progressive realisation comes into being when there is no research available or no clear methodology for participatory and non-discriminatory evidence-making. Those principles are so interdependent that it may be difficult to distinguish those two violations. Unfair procedure is more closely associated with lack of consultation when constructing research instruments, and discrimination with the effects of the decisions made using those tools. However, the great transformative potential of the three core principles to mitigate injustice rests on the progressive realisation principle. If misrepresentation in QoL metrics can be immediately remedied (by alternative existing research), the violation can be overcome without additional measures. Unfortunately, problems are generally much more complex. As QoL metrics are vastly entrenched in clinical trials and research practices, progressive realisation requires supporting policies to design better methods for people with disabilities over time, with substantive and targeted investments and programmes, subject to availability of resources. There are many pathways that states can take to continuously support the improvement of evidence. One such pathway could involve new instruments that measure QoL using HRQoL adjusted for people with disabilities, as with the WHOQOL-DIS and other tools, expanding the scope beyond health to include interpersonal relations, work, and integration into the community (Friedman 2018). Research agencies could use explicitly unbiased metrics for people with disabilities. Governments could enforce more appropriate evidence collection to fill knowledge gaps (e.g. supporting patients with mental health and learning disabilities unable to give consent to enter clinical trials; Oliver et al. 2002, 2003). Additionally, follow-up studies may require investment at the point of care to collect more suitable data from clinicians (Lindor 2011). Some treatments may show different results in practice, which can only be investigated in the clinical setting. This real-world evidence can be employed by state-sponsored follow-up programmes (Oliver et al. 2002, 2003; Stewart 2001). Additionally, in relation to human rights standards, it may be difficult to select the best instrument for measuring the QoL of people with disabilities, as emerging alternatives remain under development. Studies may seek to “calibrate QALYs”, excluding the utility loss with disability or age to estimate the value of a technology (Franklin 2017). Researchers have devised alternatives to DALYs to reduce discrimination against life years with disabilities (in comparison to life years without them), giving priority to life extension rather than disability-free life (Esposito and Hassoun 2017). The capability approach provides another pathway to QoL that has been increasingly regarded as a viable option for human rights-based approaches to public policy and human development (see e.g. Al-Janabi et al. 2013; Cookson 2005). With the capability approach, QoL is measured by dimensions that refer to what people may aspire to do and be with their lives (functioning). A promising candidate to replace the utility-based score, combining the capability approach, is the multidimensional first-order dominance approach, which does not require subjective weights or preference-based utilities and aggregates different human rights-values equally, preserving their interdependence (Arndt et al. 2018). Shortcomings could be also addressed by integrating an “extra-step” or different weight to indicators by incorporating other objectives in health policymaking (multi-criteria

Disabilities, evidence-making and quality of life  559 decision analysis) or using additional ethical analysis (Johri and Norheim 2012; Giacomini et al. 2013; Schokkaert 2015).

5.

CONCLUSIONS: THE MUTUAL REINFORCEMENT OF THE THREE CORE PRINCIPLES FRAMEWORK

In the framework suggested in this chapter, the three core principles in evidence-making are interdependent and realised through progressive realisation. As shown in Figure 46.1, the evidence must reflect the highest levels of non-discrimination and fair procedure. The bottom left quadrant (low non-discrimination and fair procedure) constitutes a pronounced violation of the right to health (or another right engaged within a policy). The progressive realisation is invoked in the top left and lower right quadrants to correct failures in the other principles and attain evidence compliant with a human rights-based approach.

Figure 46.1

Three core principles framework

These principles can be applied in relation to any type of evidence, including the value of evidence in relation to other forms of knowledge and the experience of minorities. As measurements and evidence-making in economics and healthcare are not infallible, the three core principles serve to drive knowledge production towards human rights principles in their usage and interpretation. On a normative level, evidence in health policy and resource allocation is influenced by implicit social values or beliefs, although it has been traditionally treated as neutral, factual, and separate from value judgements (Hofmann et al. 2018). The three core principles are normative values that should regulate and determine evidence-making and the decision-making criteria in a human rights-based approach, promoting a deliberative democ-

560  Research handbook on disability policy racy bound by substantive standards rooted in human rights (Fleck 2009; Gutmann 2004). To meet the standards of the three core principles, deliberative democracy is implemented through an evidence-informed deliberative process that ensures fair procedure and non-discrimination, so that patients are not excluded from decision-making due to a lack of suitable evidence. Nonetheless, there are significant limitations in the international human rights standards around evidence-making, as the guidance is generic and does not specify the methodology to be employed for each group of people. There is much space for state discretion and few “red lines” are defined by human rights bodies. One prohibited ground is explicit discrimination, but indirect discrimination is much more subtle, occurring through indicators and measurement techniques. From a human rights perspective, it remains unknown whether certain metrics may be compensated by other means (extra criteria or equity weights) under a participatory procedure. Though there is incipient criticism of population health summaries in a human rights-based approach, no clear recommendations on methods or supported models of QoL measurement have been made in the international human rights system.

NOTES 1.

Start of endnote. See, for example, UNGA, “Report of the Special Rapporteur on the Right to Development” (30 July 2018) A/73/271, para. 11.e; HRC, “Report of the United Nations High Commissioner for Human Rights” (20 April 2018) A/HRC/38/37, paras 30–31; HRC, “Guiding principles on human rights impact assessments of economic reforms” (19 December 2018) paras 17.1–2. End of endnote. 2. Start of endnote. CESCR, “General Comment No. 22 (2016) on the Right to Sexual and Reproductive Health (Article 12 of the International Covenant on Economic, Social and Cultural Rights)” (2016) E/C.12/GC/22 Art. 21. End of endnote. 3. Start of endnote. HRC, “Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health, Dainius Pūras” (2 April 2015) A/HRC/29/33, paras 49–51. End of endnote. 4. Start of endnote. Ibid., para. 51. End of endnote. 5. Start of endnote. See note 4 and CRPD, “Concluding observations on the initial report of Seychelles” (16 April 2018) CRPD/C/SYC/CO/1, paras 53–54. End of endnote. 6. Start of endnote. See for example, Conference of the State Parties of the CRPD, “Improvement of disability data and statistics: Objectives and challenges” (1 April 2015) CRPD/CSP/2015/3, paras 4–12; United Nations and Department of Economic and Social Affairs, Disability and Development Report: Realizing the Sustainable Development Goals by, for and with Persons with Disabilities: 2018 (2019), 275–83; Statistical Commission, “Joint report of the Secretary-General, the Washington Group on Disability Statistics and international agencies” (20 December 2019) E/ CN.3/2020/34. End of endnote. 7. Start of endnote. See for example, CRC, “Concluding observations on the combined fifth and sixth periodic reports of Belarus” (28 February 2020) CRC/C/BLR/CO/5-6, para. 31; CRPD, “Concluding observations on the initial report of Montenegro” (8 June 2020) CRPD/C/MNE/CO/1/ Add.2, paras 9–10. End of endnote. 8. Start of endnote. HRC, “Report of the Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health” (15 April 2020) A/ HRC/44/48, para. 19. End of endnote. 9. Start of endnote. Ibid., paras 18–20. End of endnote. 10. Start of endnote. Conference of the State Parties of the CRPD (see note 6), para. 9. End of endnote. 11. Start of endnote. CRPD, “General Comment No. 6 (2018) on equality and non-discrimination” (26 April 2018) CRPD/C/GC/6, para. 71. End of endnote. 12. Start of endnote. See Affordable Care Act, Sec. 1182. [42 U.S.C. 1320e-1] (e). End of endnote.

Disabilities, evidence-making and quality of life  561 13. Start of endnote. UNGA, “Report of the Special Rapporteur on the Rights of Persons with Disabilities” (16 July 2018) A/73/161, para. 32. End of endnote. 14. Start of endnote. See, for example, CESCR, “General Comment 14 – General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12)” (11 August 2000) E/C.12/2000/4, paras 11, 17, 34, 54; HRC, “Draft guidelines for States on the effective implementation of the right to participate in public affairs” (20 July 2018) A/HRC/39/28. End of endnote. 15. Start of endnote. See for example, HRC, “Human rights of older people: The data gap” (9 July 2020) A/HRC/45/14, paras 79–91. End of endnote.

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47. Establishing a human rights-based approach in healthcare: a UK example moving beyond policy and into private spaces1 Eleanor Brown and Jo Ferrie

INTRODUCTION Operationalising human rights is a major hurdle for policy makers (Ferrie, Wallace & Webster, 2018). Countries committed to human rights struggle to implement law, resulting in gaps between their rhetoric of intention and rights realisation for their citizens. In order for delivery to be visible, human rights implementation has focused on ‘public’ spaces (for example, improving published data such as waiting times). This chapter draws on empirical research with people experiencing Motor Neurone Disease (MND) and stroke to examine the nexus between health provision, disability, and human rights as played out in private spaces (for example, in appointments with medical professionals), and to examine the gaps that exist when international standards are not implemented with sufficient care (Goodman & Pegram, 2012). After establishing the UK context and, within it, Scotland’s response to international law, the chapter takes a critical approach asking whether the right kind of evidence is being gathered around human rights realisation. We consider how normative constructs of ‘citizen’ and ‘patient’ dominate within this UK healthcare context, effectively excluding disabled people from their human rights. To evidence this, we use PANEL2 principles to analyse data from projects that have examined the experience of people learning that they have an impairment and navigating the healthcare system. The PANEL principles were designed as a toolkit, to audit existing policy and illuminate what a human rights-based approach is and ensure that Participation, Accountability, Non-discrimination and Equality, Empowerment, and Legality are individually assessed to promote, fulfil, and protect human rights. A human rights-based approach requires that people with lived experience have greater opportunities to shape the policies that impact upon them (Hosie & Hutton, 2015). The social model is championed as an essential pathway to freedoms, and the chapter considers how people can be at heightened risk of human rights violations before they can draw on the collective power of the disability movement, in a period of ‘diagnosis’ where health language dominates. Throughout this chapter, we use the term ‘disabled people’ in line with advice from Scottish organisations led by disabled people. We direct you to Lawson and Beckett (2021) for an excellent discussion of this term and alternatives. Integrating Human Rights Law into UK Policy This section focuses on human rights incorporation in the UK. The four constituent countries of the UK (England, Wales, Northern Ireland, and Scotland) share the Human Rights Act 565

566  Research handbook on disability policy (HRA) 1998. Schedule 4 of the Scotland Act 1998 additionally allows for Scotland to legislate to further protect human rights. The Act is ‘our’ ratification of principles within the European Convention of Human Rights and pertains predominately to civil and political rights. Within the Act, human rights are understood to be inclusive (we all have them) and indivisible (cannot be granted or realised selectively). The HRA 1998 does not secure or promote economic, social, and cultural rights. These include the right to food, adequate housing, and, critically, the right to health (Macklem, 2013). Thus, UK legal structures have yet to sufficiently marry our domestic legal system and the internationally enshrined human right to health. The HRA 1998 places less focus on human dignity, whereas it is emphasised in international treaties, and this may be understood as a derogation from international treaties. This may have filtered down to common sense public understanding of human rights. While people may recognise the value of dignity in healthcare, they fail to appreciate that human rights are one way of securing it (Donald et al., 2009). The misrepresentation of human rights in modern politics and dominant media has influenced many in the UK (Balabanova, 2014) who relegate it to being about ‘political correctness (gone mad)’ (Donald et al., 2009). Scotland has publicly and politically embraced human rights principles and attempted to improve rights realisation, carefully championing this as a ‘move away’ from Westminster and UK rule. As a mechanism to deliver against the UN’s Sustainable Development Goals, Scotland launched the National Performance Framework,3 which since 2018 has incorporated a national outcome that people ‘respect, protect and fulfil human rights and live free from discrimination’. Progress towards this outcome is monitored through indicators (though a planned indicator for ‘public services treat people with dignity and respect’ has not been developed yet), and so far no improvements or progress have been evidenced. Yet, Scotland is aiming to improve, and public policy has drawn from major imperatives such as the World Health Organization Constitution (1946), which includes freedoms to control one’s health and body, asserting entitlement to the highest attainable level of health (Molkizadeh et al., 2019). Further Scottish policy recognises the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD; UN 2006) and the need for greater inclusion of disabled people in every aspect of life. The ‘Keys to Life’ Implementation Framework and Priorities 2019–2021 (Scottish Government, 2019) formalises the need to meet international obligations to disabled people under the UNCRPD. Similarly, the UK’s Equality Act (2010) draws on the social model (Oliver, 1990) and articulates the rights of disabled people to be treated equally. While equality frameworks can challenge discrimination, the principle of equality can lead to people being treated equally badly. In contrast, a human rights approach, using the concept of minimum core obligation (Walby, 2009), allows a threshold to be set, by a nation, below which no one will fall (see also Flegg, 2021). By linking policy documents to human rights principles, Scotland is promoting itself as committed to delivering human rights not just rhetorically, but in practice. Evidencing Progress Towards Human Rights Realisation Realising human rights is challenging. This is in part because of the concept of universality, the idea that we can globally agree on what constitutes a violation of human rights (see Chapman, 2003). In attempting to create a comparative evidence base, the United Nations turned to statistics and indicators (OHCHR, 2012). This resulted in reductionism (Landman, 2009), first

Establishing a human rights-based approach in healthcare  567 by relying on what could be measured statistically (i.e. could be counted), and second by measuring a limited number of violations (so data produced was manageable). Scotland’s National Performance Framework has borrowed this methodology. As Ferrie and Hosie (2018) argue, the statistical drive has been influenced by global politics (Bowker & Star, 1999). The push to measure the impact of genocide or state-sanctioned torture has rightly allowed comparison between states and analysis from year to year. However, there are many violations that are not included in the list, and the list arguably was produced in line with recommendations from the global North. It is these states in the global North, with privilege, power (Power, 2004; Merry, 2016), and fairly low incidents of war (on their own soil), that benefit and can claim that their human rights violations are low to non-existent. Therefore, it is implied that the global North, including the UK and Scotland, are superior and can evidence this using human rights data. An example of this is the UK’s absorption of civil and political rights into domestic law (where it ‘scores’ well) but continued resistance to incorporate economic, social, and cultural (ESC) rights (where it would not: ESC rights are consistently violated). Scotland has a particular role to play as a leading pro-rights voice, being the only UK nation to have their own National Action Plan: a roadmap towards rights fulfilment (SHRC, 2018). Scotland’s National Action Plan (SNAP) has completed its first phase 2013–2018 (Ferrie, 2019) and is consulting with civil society, Government, and rights holders to develop the second phase, SNAP 2. Key to the success of SNAP is support from the Scottish Government (The Guardian, 2015) and leadership from Scotland’s National Human Rights Institution, the Scottish Human Rights Commission (SHRC). The SHRC, with stakeholders involved in SNAP, developed ‘an innovative approach of grounding international rights in everyday contexts’ (Ferrie, Wallace & Webster, 2018: 2). SNAP has strengthened the narrative in Scotland, helping many to understand and support human rights as a framework for progressive change and more than the ‘property’ of the political elite, lawyers, and those with the financial means to access the courts. SNAP successfully brought together stakeholders that could interpret law into their institutional practice and progressively innovate to improve health and social care policy. Although there is evidence of stronger work in the latter years, SNAP was less effective in working alongside rights holders who had direct experience of exclusion, marginalisation, and oppression. This includes disabled people. This is an issue that is returned to in considering the role of participation in delivering human rights. First, in order to better understand why some people are excluded, we consider normative constructions of inclusion. Between the Gaps: How Normative Constructions of Being a Citizen and a Patient Exclude Disabled People Social contract theory (Rawls, 1980) describes the relationship built on exchange: of welfare, services, and protection from the State; for the obedience, labour, and tax returns of its citizens. This theory intentionally excluded disabled people as unable to produce, even when they were, or where the State was responsible for this inability (for example, refusing disabled children access to education and then blaming them for unemployment). Nussbaum (2006), among others, illuminated this as unjust and dehumanising, highlighting that human rights are not universal in practice, as disabled people (among many other groups) face exclusion. Disabled people face barriers to human rights, and this is signified by the ‘need’ for additional legislation pertaining to the lives of disabled people (i.e. United Nations, 2006; Mégret,

568  Research handbook on disability policy 2008) and a significant and growing academic literature that evidences barriers. Fineman’s theory of vulnerability (2008) captures the wide-ranging debates, as she argues that we are all inherently and potentially vulnerable, and so any othering, or excluding on the basis of vulnerability, is a false logic. Fineman (2017) calls on targeted efforts from policy and social structures (Heikkilӓ, Katsui & Mustaniemi-Laakso, 2020) to be ‘responsive’. The UNCRPD essentially works like equalities law: extended consideration and responsiveness first requires the person to be identified as meeting criteria as a disabled person, which is difficult where people are awakening to their impairment and barriers to being and doing. Where this experience coincides with receiving a diagnosis such as MND, or care following a stroke, the person should be understood as being in a position requiring greater responsiveness from the State. This places an added duty or urgency onto healthcare practitioners, as State actors, to ensure that human rights are protected and fulfilled. Fighting for human rights requires certain conditions to be in place. First, a person needs to know that they have human rights and then know that the institutions they engage with have a duty to uphold those rights. A person or their advocate must be able to articulate where the barrier is, then challenge it, often during heavily structured exchanges that take place against a backdrop of unequal power dynamics. To illuminate this, it is useful to consider Parsons’ (1951) ‘sick role’ and in turn what it means to be a ‘good patient’. Though criticised for relating to infectious diseases, Parsons’ ‘sick role’ has endured and accurately captures the plight of patients who want to complain about poor provision but fear being excluded from their right to health and ongoing care. Health is considered a virtue in Western societies (Williams, 1993), implying that illness is a deviant status (Bury, 2001). To assert oneself as virtuous, or ‘good’, the ill person has an obligation to recover, accepting the treatment and advice given by healthcare practitioners. This is a straightforward process for many but leaves those with long-term health conditions or impairments unable to ‘behave virtuously’. In addition to the social pressure of not being able to get better (distinct from the potentially distressing impairment effects), disabled and chronically ill people are often highly dependent on healthcare practitioners and will avoid ‘risking’ a positive relationship by challenging poor care and support. It is imperative that health providers understand this structured power imbalance and improve their responsiveness. State and Institutional Responsiveness Must Penetrate Private Spaces The challenges of securing human rights for chronically ill and disabled people become individual problems, often articulated in private spaces such as the home or clinic. The disability movement aimed to challenge this in the UK, leading to the social model of disability (Oliver, 1990) and politicisation of unfair treatment, and used collective action (Goodley, 2014) to call out barriers as oppression (French, 1994). The conscious removal of the body (Oliver, 1990) as the cause of disabling barriers ensured that the focus for change was on social structures. Arguments that the social model ignored the body (see Shakespeare, 2017) relate not just to disagreements within disability studies but a schism between disability studies and medical sociology. As a result, bodies that needed medical support became the focus of medical sociology, and removing social barriers became the purpose of disability studies. This divide means there is insufficient academic focus on experience around diagnosis that also recognises the structured oppression that produces disability.

Establishing a human rights-based approach in healthcare  569 What the social model has achieved for disabled people is transformational, and as barriers to being and doing continue, its power is still needed. Thomas’ social relational model of disability (1999, 2007) sought to engage with the realities of impairment without losing the emphasis on structured oppression. Her use of the term ‘impairment effects’ helped many conceptualise non-socially imposed restrictions to being and doing (Thomas, 1999: 137). This approach is inclusive and helps people with MND and stroke define themselves as disabled, the first step in being ‘eligible’ for collective action. Most access support from ‘disability service teams’, for example. In the UK these are teams of professionals often comprising physiotherapy, social work, nursing, and occupational therapy working together to support the intersectional barriers disabled people face. Yet many definitions of MND and stroke speak to the impairment, rather than socially constructed barriers, medicalising their early experiences. To support this point, both conditions are defined next. MND is an umbrella term describing a number of conditions affecting the motor neurones (Talbot and Marsden, 2008). Most people diagnosed with MND are thought to have amyotrophic lateral sclerosis (ALS), and an alternative diagnosis is often triggered only after survival beyond the average term. MND is a condition described as ‘unstable terminality’ (Lerum et al., 2015: 82), echoing Brown’s (2003) observation that MND sits astride the boundary between chronic and terminal illness with people facing possibly years of care strategies and then end of life after an unspecified amount of time. MND affects around 1 in 50,000 people. There are roughly 3,000 people in the UK with the condition, including 450 people living in Scotland. A stroke is a sudden neurological event that can be fatal or result in multiple impairments in survivors (McKay, 2004). Strokes occur when a blood vessel bursts (haemorrhagic) or when the brain’s blood supply is blocked (ischaemic). Survivors may experience limb weakness or paralysis, communication and cognitive impairments, and altered emotional responses (Langhorne, Bernhardt & Kwakkel, 2011). Around one-third of stroke survivors have aphasia, an impairment causing difficulties with speaking, reading, writing, and understanding language (Dickey et al., 2010). In 2018, there were more than 1.2 million stroke survivors in the UK, including 128,050 in Scotland (Stroke Association, 2018). The average age of stroke in the UK is decreasing, with around one-quarter occurring in people under the age of 65. A stroke is life changing, and survivors may need long-term support. Due to stroke and MND being defined based on the medical impairments experienced, there may be a gap in how people transition from understanding their bodies as being ill to being impaired and disabled. If ill, the role of the ‘good patient’ may prevent them from demanding rights during engagements with healthcare providers. This dilemma is examined by drawing on several projects that have explored living with these conditions. Data are analysed using the PANEL principles to show how difficult it can be to realise human rights in the early stages of these conditions.

METHODOLOGY This chapter uses the PANEL principles to re-analyse existing datasets around living with MND and stroke survivors with aphasia. We used these principles as a theoretical lens to illuminate how well healthcare institutions and professionals within them are upholding the rights of disabled people. Using PANEL, we highlight examples of where the healthcare system is

570  Research handbook on disability policy succeeding or falling short in its obligations to those living with MND and stroke. The datasets and projects they are derived from are described here. Motor Neurone Disease (MND) MND Scotland funded an initial three-year project examining care pathways for families who face MND (Ferrie, Robertson-Rieck & Watson, 2013). Families were asked to reflect on the care and support they had received from all providers since they noticed early symptoms (Ferrie & Wiseman, 2020). The 38 families recruited met JF between one and four times. In total, 69 people (36 with MND and 33 carers) participated in interviews. This data is supplemented by two smaller studies. In 2017, six interviews were completed for the Chief Scientists Office project (Speak Unique – PI Philippa Rewaj) exploring personalised synthetic voice use, and in 2018 for MND Scotland (Futures MND – PI Suvankar Pal), 14 interviews were conducted to explore the ethics of holding clinical and genetic data (CareMND with the Euan MacDonald Centre). Both studies explored diagnosis. Initial interviews usually lasted around 90 minutes, and subsequent interviews lasted around one hour. Interviews were audio-taped with the permission of all participants. Ten participants had lost verbal speech capacity and communicated with the assistance of their partner or through a computerised device. As families agreed to participate multiple times, limited communication capacity was not seen as a barrier to inclusion. Ethical permission was granted by the University of Glasgow. All participants have been given a pseudonym to protect their right to confidentiality and anonymity. Each participant gave ongoing and informed consent over the course of the research. Stroke In 2019, a user-centred design study was conducted to develop an accessible rehabilitation resource with five stroke survivors with aphasia, based in the south of England (Brown et al., 2022). In addition to co-designing the resource, participants discussed their experiences of rehabilitation and what would have helped them to participate more fully. Data were collected via three semi-structured focus groups facilitated by EB, each lasting approximately 90 minutes. All sessions were recorded with permission, and all participants gave informed consent, supported by accessible information and consent forms. All reporting uses pseudonyms to protect participant anonymity. Extending the above study, an online survey was conducted by EB in 2020 to explore how healthcare professionals help stroke survivors with aphasia to set goals for recovery (Brown et al., 2021). A total of 251 respondents took part from the UK, Ireland, Australia, Canada, and Aotearoa New Zealand. Data from this study provided useful insights into how health professionals support the participation of people with aphasia in their rehabilitation. This data is supplemented by examples from a qualitative, critical realist study conducted by Clancy, Povey, and Rodham (2020) that used interviews and focus groups with six stroke survivors with aphasia, ten caregivers, and six healthcare staff to explore experiences of staff– patient communication. This study was used because of its focus on in-depth, qualitative data and stroke survivors’ unmet needs. In all cases, diagnosis appeared as a major theme. In this chapter, we are looking specifically at data around these experiences and the very early stages post-diagnosis, dominated by inten-

Establishing a human rights-based approach in healthcare  571 sive medical care. This subset of data was analysed looking for each of the PANEL principles either as an asset (could be demonstrated) or deficit (was demonstrably absent).

FINDINGS: PANEL Participation Participation means involving people in decisions that affect their rights. Critically as MND symptoms tended to appear later in life, participants had experienced power and were able to evidence that becoming a patient effectively removed them from ‘equal status’ and regressed their access to human rights. One example of this comes from Patsy, who had worked as a nurse: I hadn’t seen this GP with the problem, I had seen somebody else who unfortunately had left and he asked me what my symptoms were and I showed him my hand and I told him about my leg and he just said ‘Just a coincidence…’ and I was angry with him. (Patsy)

Patsy’s story continued: her GP failed to enact policy and refer her to a consultant, convinced of their diagnosis of trapped nerves. Further, they did not alert Patsy of their decision, leaving her waiting for an appointment that did not come. Eventually, she realised that she had not been taken seriously, and following advice from her nurse-daughter, sought a private appointment with a consultant. This consultant began by saying that the notes from the GP stated that Patsy was a time waster. Patsy insisted on being examined and the consultant swiftly apologised as they became aware that Patsy likely had MND. Already dealing with a sudden major medical event, stroke survivors with communication impairments also experience loss of power. A policy shift that provided advocacy would avoid leaving them vulnerable to exclusion. Stroke survivors with aphasia in Clancy et al.’s (2020) interview study described their experience of post-stroke hospital care as like ‘being in a foreign country’, powerless and often without support to understand their experience: And that was more frustrating because they were doing things and checking … blood pressure and taking you for a scan and you had no idea what was happening because your brain … your brain wasn’t taking in what they were doing to me … I wasn’t taking that in and I’d no idea what was going on so I felt totally at a loss. (Sue)

Some healthcare staff in Clancy et al.’s (2020) study acknowledged the power imbalance that could occur due to stroke survivors being forced to relinquish control over their body, routines, and communication. One physiotherapist described the challenge of mitigating this imbalance with stroke survivors who were older and took on the role of ‘good patient’: Perhaps he’s compliant because he’s been in the patient role for a while […] and particularly sort of for older patients they tend to see the person who’s got the role of the healthcare clinician as to be the person who’s sort of in charge of the interaction […] so people tend to sort of say ‘yes’ pretty much to whatever you suggest. (Alan)

In contrast, Naomi, a young stroke survivor in the user-centred design study, felt well supported since her stroke. She was an active member of her local peer-led aphasia support group.

572  Research handbook on disability policy The implementation of a peer-support policy allowed Naomi to take a leading role in her rehabilitation and make decisions about her future. Accountability Accountability is fulfilled by ensuring rights are monitored and that there are avenues to resolve violations. Healthcare professionals have a responsibility to support stroke survivors to participate in decisions about their care and recovery and to be accountable where failings occur. In the survey of rehabilitation professionals, some participants explained that they relied on the speech and language therapist in their rehabilitation team to help them work with stroke survivors with aphasia and did not feel confident working alone. This has implications for the quality of care that stroke survivors with aphasia receive, as speech and language therapists may not always be available: I’m lucky at the moment to be able to work really closely with the speech therapist, however she rotates in Jan[uary] and the replacement speech therapists are less involved in [multidisciplinary team] working, so this will provide some barriers for working with aphasic patients. (Kate ‘K’)

Despite access to communication being recognised as a human right (International Communication Project, 2018), healthcare services are often not held accountable for providing accessible information or access to appropriate therapies in the long term. Here policy implementation is disrupted by a broader lack of funding and resources available to public services. Ian, a stroke survivor with aphasia who participated in the user-centred design study, described his frustration at a local policy that, in his view, set an arbitrary cut-off point for his rehabilitation that is disabling: The help you get from the National Health stops after a year … at the end of a year, they say, right not much more we can do for you now, off you go. So how do I get speech therapy? Pay for it. I’ve had no assistance from the National Health Service since 10 months [after the stroke] actually. (Ian)

Ian had found support and purpose through the aphasia support group and felt he had been failed by the health service. When rehabilitation was not sustained and with no route to complain, no one was accountable for this decision. Failings were also reported in the MND research. Anticipating bad news did not insulate participants from the shock of a diagnosis, often expressed with embodied evocations such as ‘my stomach turned’ (Bill), ‘it was as if someone had punched me in the gut’ (Ken), or ‘My heart dropped’ (Phillip: ‘Ph’). Around half of the participants felt the diagnosis was given well, though the experience was still, understandably, brutal. The other half of the participants were angry about the way they were diagnosed and how the management of this effectively removed the accountability of the health professionals involved, as the local policy dictated that they were transferred immediately to the care of a different neurologist and care team. K:

It was quite brutal because the two of us were in there not expecting it and [medic] had Phillip up on the bench and he just did a few wee tests and then he said ‘oh, yeah. This is Motor Neurone Disease.’ And…

Ph: ‘And I’m busy just now…’

Establishing a human rights-based approach in healthcare  573 K: I started to ask a few questions because… I am like that… and then he said ‘Well, you know, I have got other patients to see…’ and I fully understand that and I fully appreciate that but we walked out that door just having been told that Phillip was dying. (Phillip ‘Ph’ and his wife Kate ‘K’)

This is not an isolated experience. Simon (‘S’) and Penelope (‘Pe’) felt dismissed after their diagnosis: S:

I had the EMG and that was absolutely clean – it didn’t indicate any problem but the guy who gave it to me said ‘The test is clear but in my opinion you have Motor Neurone Disease and you will… um…’ What was the word he…?

Pe: ‘Your body will succumb…’ S:

‘You will succumb to the disease within five years…’

JF: oh… S:

‘…and pick some leaflets on the thing on the way out…’

JF: Oh…! Pe: That was a bit shocking… (Simon ‘S’ and his wife Penelope ‘Pe’)

Another couple were not even offered leaflets: He obviously knew that Fiona was an ex-nurse because he had it on record, and he said ‘how much do you know about MND?’. And Fiona said ‘enough’. And he said ‘well you know then that you’ve got 6 months to 3 years to live then’ and I was sat alongside her. And then his next phrase was ‘by the way, my in-laws live just around the corner from you’. We were, to say the least, disgusted. (Mark speaking with his wife, Fiona)

Though some less distressing but still abrupt experiences of diagnosis did reflect on the pressures on consultants, the lack of empathy in these examples is difficult to explain. A policy within local health regions to remove the patients from the care of the diagnosing team diminished the accountability of the doctors. A national policy, initially funded by MND Scotland, to provide a follow-up meeting, preferably on the same day, with an MND specialist care nurse was key to participants feeling that they could re-start a narrative that could contribute to a restoration of personhood following the diagnosis. This was essential for the concept of accountability to be fulfilled by medical professionals. Without this, the vague prognosis and lack of a clear treatment plan left participants bewildered. I said to [diagnosing consultant] ‘what happens now?’ and he said ‘what do you mean?’ And I said, ‘well, do I have more tests or do I come back?’ He said, ‘do you want to come back?’ and he said I could take the Riluzole, and he said ‘It can cause liver damage’ … he was so removed and I really felt as though he might as well have said (and I certainly felt it) ‘well, you’re finished. Off you go …’ (Patsy)

Later in the interview Patsy ‘Pa’ reflected on the experience of being diagnosed:

574  Research handbook on disability policy Pa: I still feel that the medical profession still sees me as just a diagnosis … they don’t know me as such … they have a ‘tick list’ and so you are compartmentalised … and … it’s … JF: So it’s hurtful each time you encounter it? Pa: (sobbing) I … I try to be free of it mentally but you feel as though you’re pulled back. (Patsy)

Patsy was torn between not wanting to accept this new identity and not being given the guidance from healthcare professionals that would enable herself to be seen holistically. She was either a whole person without MND, or a person reduced to symptoms with MND. As Blmosjö wrote, ‘in the absence of a curative treatment, is it the individual rather than the disease that must be cared for’ (2001: 504). Medical professionals should be accountable for providing humanising and responsive care. Non-Discrimination The principle of non-discrimination and equality stipulates that all discrimination must be prohibited, prevented, and eradicated, and those who encounter the greatest barriers to rights realisation are prioritised. Discrimination is difficult to identify in our data, demonstrating that this is one field where few barriers are faced. This may be due to equality legislation being well embedded in medical institutions (from the Disability Discrimination Act in 1995 to the Equality Act of 2010). Nevertheless, there are indications that older people, and people who experienced barriers to communication, both common in MND and stroke patients, did not have their concerns dignified with an adequate response from some healthcare practitioners. Participants’ heightened awareness of their body was not viewed as equivalent to the practitioners’ expertise on the body, and this was linked explicitly to retiring and implicitly to ageing, for example: [The GP said]... ‘right, going to press down your thighs and I want you to push back as hard as you can with both legs’ and... eh... and he said ‘Matthew you’re as strong as an ox’ and because I was there he said ‘I think perhaps the two of you need to go home and, sort of, assess perhaps what’s going on in your lives that there’s those symptoms happening’ and looking back on it I realise he thought there was something psychological going on and you think ‘oh perhaps we’ve retired, perhaps you just don’t know how to handle it’ and I thought it didn’t seem right but we accepted it. (Nicola, with husband Matthew)

Stroke survivors with communication impairments faced being excluded from participation in decision making on the basis of their impairments. Amongst rehabilitation professional survey respondents, there was a tendency to see aphasia and cognitive impairments as barriers to shared decision making in the context of goal setting. Although this does not mean that staff fail to provide good-quality care, it suggests a pre-conception about aphasia and cognitive impairments that could hinder attempts to adapt communication. As with accountability, non-discrimination is not just the responsibility of individual healthcare professionals. Stroke survivors with communication impairments like aphasia need more time to communicate, but a speech and language therapist survey respondent highlighted that service infrastructure can discriminate against these individuals by imposing time restrictions and targets to see a certain number of patients each day:

Establishing a human rights-based approach in healthcare  575 I make the time [to work with stroke survivors with aphasia] but it is not formalised within my team and is not driven from the leadership team yet. It is something we are working toward. We are trying to be as client centred as possible (allowing more time for clients with aphasia) however, operationally, our timetables are relatively fixed. (Christine)

It is policies such as this that disable and dehumanise people. Although overt discrimination is not obvious in the above circumstances, it is important to recognise the subtle forms of discrimination that can occur, whether intentionally or otherwise, when certain individuals are not enabled to participate in their care as fully as others. This is where the notion of equality fails, as stroke survivors with communication impairments who are treated in the same way as those without the impairments are disadvantaged. Applying non-discrimination via a rights-based approach therefore requires healthcare to be responsive, utilising as much support as required to enable all service users to participate in their care. Empowerment Empowerment describes a state of being where rights are felt to be attainable, that is, where an individual values themselves sufficiently to understand they deserve human rights. Empowerment was identified as a theme in the user-centred design study. The stroke survivors with aphasia thought it particularly important to maintain ownership of their recovery goals by having accessible information about the rehabilitation process and healthcare staff with time to explain information or get to know them. Participants spoke about the value of having a peer group for support, enabling them to feel more confident and able to negotiate recovery. Naomi, who experienced her stroke at the age of 27, found that the group helped her to re-connect with others and practise her communication without fear of judgement: What I’ve noticed about being in this group … is everyone looks normal, then until you speak to them and explain to them hear like what they say every day … and hear about what they’re going through … I know how everyone else feels. I know like um when I first came to here, I felt relaxed, like everyone else knows how I feel, so… strong [making a fist]. People who don’t know me, I find it hard to… like to speak. (Naomi)

Family members or caregivers may also play a role in supporting people with communication impairments to be empowered by advocating on their behalf. However, this can be challenging, as a caregiver’s good intentions do not always translate as benefit for their loved one. Regardless of how close the relationship, a level of assumption is involved in making proxy decisions and advocating on behalf of a person who needs support to communicate. In Clancy et al.’s (2020) study, a stroke nurse explained that ‘sometimes relatives can be a barrier […] assuming what they’re [the patient] wanting’ (p. 329). When trying to facilitate empowerment, it is then important to consider all who may be involved in decision making to ensure that rights holders are genuinely heard. Prior to diagnosis, there was no access to support groups for the participants in the MND study and most felt obligated to avoid confronting their GPs and accept long waiting times, until they could not wait any longer. The participants complained about ‘time wasted’. But we had to push and push to get appointments and to get diagnosed because it was just waiting a couple of months and waiting a couple of months and it was too much of a worry, too much of

576  Research handbook on disability policy a pressure. So, we just kept phoning up their secretaries. Just push, push, push to get the tests and get the results. (Charlotte, with husband Tom)

And, I thought ‘My God, if I have to wait another 5/6 months – I don’t think I will be able to walk by that time’. My family and my daughter and that – they are cracking up … So I thought about it and I thought ‘see to tell you the truth – I don’t think that I could wait six months. I’m starting to get a bit panicky now’. (Marie)

Being pushed into behaviour that appears empowered was in fact distressing for participants, and they felt forced into this action, revealing again that healthcare providers are insufficiently responsive in fulfilling human rights. Legal Routes to Redress The principle of legality stipulates that rights should be rooted in domestic and international laws, with adequate routes to redress if those rights are violated. While legality is a key aspect of a human rights-based approach, its absence (the absence of an incorporation of economic, cultural rights in to UK law) weakens access to accountability. The law is the ultimate instrument of complaint, but it is not enough to realise human rights. Given many needed resources (time, nurses, peer support, and advocacy) to have their rights realised, it is vital that laws that protect and fulfil the human right to health are in place, and act as a trigger for increased funding to achieve a human rights-based approach and deliver the PANEL principles. The law should provide for adequate provision. MND is a brutal condition, and people often die too quickly to use legal routes to redress. Stroke survivors with communication impairments face challenges too. Many rely on support to communicate, and legal systems are typically not designed with such people in mind. While the UK Equality Act 2010 stipulates that people with communication impairments must have access to accessible forms of information, stroke survivors may be unaware of this or not be in a position to pursue legal routes due to being in recovery from a major medical event. Stroke survivors, particularly with communication impairments, also face significant and sudden but long-lasting life changes and may be impacted financially, socially, and psychologically (Fotiadou et al., 2014; Vickers, 2010). A legal system relying on bottom-up challenges to realise human rights is systematically failing people.

DISCUSSION Progress is being made in Scotland at the intersection of human rights, health, and policy. While this analysis has revealed that more responsiveness is required in ‘private’ spaces within healthcare for human rights to be upheld, there are also wider examples of positive change. For example, there may be new legislation in the next five years incorporating economic, social, and cultural rights and this will have some focus on healthcare. The new version of Scotland’s National Action Plan is very likely going to have a health and social care activity stream to connect legislation to policy. The Scottish Government have funded a new Secretariat post to

Establishing a human rights-based approach in healthcare  577 support this work. Further, people with lived experience, including disability, are part of this conversation from the beginning. This chapter started by saying that human rights are difficult to operationalise for policy makers and indeed, our analysis has shown significant gaps in the practice of healthcare providers in Scotland. The PANEL principles have been a useful theoretical lens. They have permitted findings to emerge to demonstrate the value of participation, accountability, non-discrimination, empowerment, and legality. Where these were compromised, people reported isolating, marginalising, and oppressive experiences. Using the PANEL principles, we have highlighted the barriers routinely faced by people with MND and stroke-related communication impairments when accessing healthcare. The concept of the ‘good patient’ is internalised by many participants, and healthcare providers could do more to recognise that not complaining is not equal to not having complaints. It is clear that healthcare providers, intentionally or not, prevent human rights from entering private clinical spaces. For rights to be realised in private spaces, all patients should be respected and treated with dignity and viewed as experts in their own body. While contextual information such as retiring and age should be taken into account to understand a person’s holistic needs, they should not be used to gaslight patients into believing that their bodies are ‘well’. This happened too often, and across all projects presented here, to be coincidental. National healthcare policy should shift to both address and prevent vulnerability by actively supporting healthcare workers to uphold human rights. The PANEL principles can be used as a toolkit to assess any policy to help move it towards a human rights-based approach. We have demonstrated that this process, applied here to the experience of diagnosis and post-diagnosis period, is able to spotlight gaps in practice. While it could be assumed that health and dignity in particular are so fundamental as to not require dedicated policy, our PANEL analysis has illustrated that this is not the case, and the barriers and discrimination faced by disabled people daily in ‘private’ spaces can appear largely hidden. For example, people with aphasia were excluded from decisions about their care and not spoken to directly because of assumed lack of capacity or time limitations. Similarly, people with MND experienced lengthy delays to services with a drastically life-limiting disease. There also needs to be a fundamental shift in how policy is created and enacted at every level. Scotland has taken steps in this direction by seeking to involve stakeholders in the development of its National Action Plan towards rights fulfilment. As new Scottish legislation appears, it could effectively require use of the PANEL principles to audit existing, and future-proof new policies.

CONCLUSION If the status quo for disabled people is to change, healthcare providers must recognise their obligation to build and evaluate their services based on a human rights-based approach, because not to do so implies that the people they support are not worthy of rights. Changing policies and legislation to reflect human rights as the core motivation and framework would ensure that institutions such as healthcare providers are truly fit for purpose. A human rights-based approach using PANEL means that healthcare providers need to work with patients, disabled people, and others with lived experience. New methodologies may be needed for this work. Talking and listening are critical for healthcare professionals to understand their own obliga-

578  Research handbook on disability policy tions while also supporting disabled people to be more aware of their rights and avenues to address rights violations. Measurements that capture the experience of human rights in private and local spaces require a different methodology to comparative statistics. Too often, indicators are used to quantify a problem and deliver qualitative principles (Archer, 2009; Lawson & Priestley, 2013). By using a more grounded, qualitative exploration (Townsend, 1975) of ‘what life is like’, we can focus not just on ‘problems’ or ‘barriers’ to rights but also ‘solutions’ and ‘enablers’.

NOTES 1. 2. 3.

Start of endnote. Thank you to Aidan Flegg and Paul Pearson for internal peer review: their wisdom, knowledge, and kindness have certainly elevated this contribution. End of endnote. Start of endnote. See: https:// www .scottishhumanrights .com/ projects -and -programmes/ human -rights-based-approach/. End of endnote. Start of endnote. See: https://nationalperformance.gov.scot/. End of endnote.

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48. Narrative 14: Technology in the lives of people with disabilities Brooke Ellison

It is impossible to talk about technology without also talking about disability. It is impossible to talk about disability without also talking about technology. To attempt to talk about either without also incorporating the other would be woefully insufficient, gapingly incomplete. This is a lesson I learned early on in my life with disability, only a few short months after the accident that would come to define my life forever. I was 11 years old when I experienced the accident that would come to shape my life. Walking home from my first day of seventh grade on a sunny September day, I was hit by a car. The damage that was done to my body was immeasurable: my forehead hit the windshield of the car, cracking my skull open; I was, by virtue of the impact, thrown over 100 feet, landed face first on the pavement, biting off one-third of my tongue; each of my four limbs was damaged in some way; and, when emergency responders arrived at the scene of my accident, I was in cardiac and respiratory arrest. The likelihood of my survival was quite minimal and the prognosis made by my doctors – a prognosis that nearly any physician would make – was that I would likely succumb to the extensiveness of my injuries or, if I might survive, I would be significantly cognitively impaired. As likely as either of those outcomes were at the time, neither came to pass. I was, however, left with a spinal cord injury quite high on my spinal cord – cervical vertebrae, C2–C3 – which left me paralyzed from my neck down and dependent on a ventilator to breathe. I spent a total of nine months in the hospital, my body fighting to recover from the injuries that it had sustained, to whatever degree recovery might be possible. The first six weeks of my veritable gestation period were spent in pediatric intensive care, where I was treated and brought from the brink of death to someplace a bit less terrifying. When all that could be done for my acute state was done in intensive care, I was moved to a rehabilitation hospital to complete my hospitalization while my home was renovated, and my body was stabilized. It would be in rehabilitation that I would learn to live with a disability, where I would learn what revisions I needed to make to my worldview and what supports I would need to reinsert myself back into the world I had known – a world that was no longer designed for me. It would be in rehabilitation that I would be introduced – or, better said, reintroduced – to technology, not as a luxury, or set of gadgets, but as a necessary component of my life. While in rehabilitation, I learned to drive a wheelchair – not just any wheelchair or the type of heuristic one develops when imagining a wheelchair, but a mechanized, power wheelchair. Because I did not have the ability to move my hands or fingers at all, I had to learn to drive a wheelchair that was operated through what was called a “sip-and-puff” switch. This switch is activated by applying varying amounts of air puffed into or sipped from a straw attached to the chair. Many scuffed walls and bumped doorways later, I learned that this technology could provide me with independence that I thought I had entirely lost. While in rehabilitation, I also learned how to use this very same sip-and-puff mechanism to interact – however rudimentarily 581

582  Research handbook on disability policy – with a computer. Using sips and puffs to correspond to dots and dashes, I learned to use the switch to type individual letters using the Morse code alphabet. As laborious and oftentimes frustrating a process as this was, it broadened horizons for me that I was not even aware were in existence. I did not know how deeply integrated technology would come to be in my life, until, as the years came and went, technology became the mechanism by which I could live a rich life and minimize the deficits created by disability to as minimal a factor as possible. It would be through the aid of technology that I would write my paper assignments in junior high school and high school, and ultimately my application essays for Harvard University. It would be through technology that I would write and independently deliver speeches while working as a public speaker. It would be through technology that I would have the ability to travel the streets and avenues of my neighboring towns while running for public office. And, it would ultimately be through the use of technology that I could research and write my PhD dissertation, allowing me to become a professor of applied medical ethics and disability at Stony Brook University – in the very same institution that saved my life all those years ago. Technology is the bridge that spans the divide that disability can often create. Technology is central to the lives of people with disabilities, affording them the opportunity to accomplish goals and conceivably to reach heights that are typically unexpected. The relative impact that technology has on the lives of people with disabilities can be immeasurable. And, yet, far too little of this technology is designed with disability in mind or is developed with accessibility as a focus. In the years since my accident – of which there have been 31 now – technology has expanded to a nearly inconceivable degree; it has revolutionized how our world operates, how people work, how students learn, how patients are cared for, and how communication takes place. Yet, in this revolution, the lives, needs, and idiosyncratic abilities of people with disabilities have been missing. As a professor at Stony Brook University, one of the courses I teach – and one of the areas that I study – is Inclusion in Innovation. Through this course and through this work, I teach future engineers, physicians, and healthcare professionals how to incorporate the lives and needs of people with disabilities into their work. Through this course and through this work, I teach my students, who will go on to be a part of all sorts of professional disciplines, that the lives of people with disabilities are valuable and important and worthy of being included in society; however, they need the tools to be a part of it. Right now, we need more innovators thinking along these lines. Just as importantly, right now, we need more policies that incentivize this kind of thinking, and we need more opportunities for current innovators to understand the importance of their work to the lives of those who can benefit most from it. Technology – designed with their needs and their potential in mind – can be the very mechanism by which people with disabilities can participate in the world around them. The world to which they belong. I teach these lessons because I know them to be true, and I have lived them.

49. Disability and human rights: the right to benefit from scientific progress Anne M. Bryden, Jennifer French and Brian Gran

NORTHSTAR NEUROSCIENCE – CASE STUDY In 2003, the first in-human study, published in the journal Neurological Research, reported observations of using epidural cortical stimulation of the motor cortex paired with physical rehabilitation to improve upper extremity function (Brown et al., 2003). A 65-year-old male with right spastic hemiparesis due to stroke underwent surgery to receive an electrical stimulation brain implant. Following treatment, his arm and hand function showed a clinically significant improvement using this novel treatment. The technology’s development was supported by years of pre-clinical research and was sponsored by Northstar Neuroscience, Inc. The clinical trial, called EVEREST, was their largest trial, a multi-center, single-blinded, randomized pivotal trial with U.S. Food & Drug Administration approval for 21 sites with a target of 151 participants. The ultimate goal was to attain approval to avail this technology to the 5.6 million people living with hemiparesis due to stroke. Many costs and risks are associated with the development of implanted medical technology. As a commercial entity, Northstar endured pressures to find necessary funding. In 2006, Northstar completed its initial public offering on the NASDAQ, raising $112 million, supporting four clinical trials for four different indications. Early results of the EVEREST trial in 2008 reported that the 4-week primary endpoints did not meet the FDA’s efficacy standards, but the secondary endpoints were still under evaluation. Despite an attempt to redirect focus, pressures from the stockholders forced Northstar’s closure on July 2, 2009. After closure, study participants had the brain technology explanted leaving scars on their brain tissue, skin tissues and more importantly without treatments for functional gains. In 2016, EVEREST data were published. Despite not meeting the four-week endpoint, clinically significant improvement of the treatment group over the control group at 24 weeks was achieved. Despite scientific and medical evidence, commercialization barriers such as regulatory requirements, reimbursement, financing and funding, or even clinical adoption can stifle technological innovation. Northstar’s story raises questions around the ethical and societal impacts of implanted technologies and the human right to science. This is one example.

INTRODUCTION People with disabilities often experience limitations accessing complex rehabilitation and assistive technologies. Access to science and technologies is especially tenuous in the U.S. and other developed nations whose healthcare systems operate under capitalist structures. The U.S. 583

584  Research handbook on disability policy healthcare system is influenced by a liberal welfare regime (Esping-Andersen, 1999; Gran, 2003). Welfare regimes are understood as the articulation of welfare programs and institutions, including the state, markets, and households, to ensure against social risks and protect welfare. The U.S. liberal welfare regime minimizes government involvement, individualizes risks, and promotes market solutions (Esping-Andersen, 1999). As a result, citizen entitlements are not favored, and are characterized by restricted eligibility requirements and narrow conceptions of what constitutes social assistance (Esping-Andersen, 1999). Given that access to important technologies is dependent on the marketplace, the sustainability of expensive technologies for small disability populations is challenged, calling into question a human right to assistive technology under a liberal welfare regime. This chapter examines utilities of the human right to science (UN Committee on Economic, Social, and Cultural Rights, 2020) in reducing two significantly complicated barriers to accessing life-enhancing technologies in the U.S. The first barrier is the expense of complex rehabilitative technologies, which are often not “covered” by private or public insurance policies, and typically need to be considered “reasonable and necessary.” Consequently, people with disabilities often rely on personal resources, philanthropy, or government-sponsored programs that feature high restrictions for qualification. The second barrier is more arcane and tied to market-regulatory structures that can influence clinical trial management, as seen in the Northstar scenario, and prevent certain technologies from achieving sustainable, commercial viability. While the first barrier is well known to stakeholders of complex rehabilitative and assistive technology, the second is less familiar. The “valley of death” is the appellation of obstacles to translating scientific discovery and knowledge into clinical application (Barrable et al., 2014; Coller & Califf, 2009; Meslin et al., 2013). Small disability populations encounter the valley of death because beneficial technologies present poor profit potential, inadequate reimbursement, and subsequent reluctance of private companies to invest in such technologies. For many individuals with disabilities, obstacles accessing technology restrict societal participation, further preventing the realization of rights espoused in U.N. treaties and conventions. Compared to other areas of human rights, the human rights of people with disabilities are articulated in the UN Convention on the Rights of Persons with Disabilities (CRPD) (UN General Assembly, 2006). The CRPD enjoys widespread support, with over 180 UN Member States having ratified the Convention in September 2021. Nevertheless, in many societies, issues of disability, science, and technology are rarely addressed through the lens of human rights (Chapman, 2009). Stakeholders including assistive technology service providers, health professionals, funders, and even users and their support persons do not routinely approach problems of access from a human rights perspective. While some stakeholders, particularly health professionals, may operate within the framework of the International Classification of Functioning, Disability, and Health (ICF) (World Health Organization, 2001), which acknowledges personal and environmental influences on health, rarely do they go so far as to define barriers to important technologies as human rights violations (Bryden, 2020). Can the human right to science bolster access to science and technologies for people with disabilities, leading to greater community inclusion and societal participation, reduced discrimination, and promotion of other human rights? By recognizing inherent dignity and rights for all levels of ability, a human rights model can justify and promote access to complex rehabilitation technologies that are critical for realizing rights to societal participation and citizenship. Access to technology and services, including neurotechnology, by people living with paralysis is analyzed in this chapter. Disability community members have significant needs

Disability and human rights  585 for technology that often go unmet, for reasons underscored by the Northstar Neuroscience story, as well as reluctance to invest in products without a viable business model. Given these challenges, the human right to science may be a game-changer for people with disabilities. While the human right to science was articulated over 64 years ago in Article 15 of the UN International Covenant on Economic, Social, and Cultural Rights (ICESCR), only in spring 2020 did the responsible UN Committee unanimously adopt and publish a General Comment announcing its understanding and expectations when it comes to implementing this right. This chapter investigates the human right to science as a tool to maximize access to science and technologies that are critical to community inclusion, reducing discrimination, expanding societal participation, and extending other human rights. This investigation arises from a combination of perspectives including sociology, human rights, health sciences, law, disability, neuroscience, and technology. First, the human right to science will be defined, followed by an overview of contemporary scholarship and applications. Then, historical conceptualizations of disability under different models of disability and frameworks such as the ICF will be reviewed, addressing how a human rights model is congruent and perhaps complementary to the ICF. Then the current state of how technology and neurotechnology progress from discovery to translation is reviewed, including barriers related to regulatory, funding, and market-based policies. The chapter concludes with a discussion of rights-based solutions for technology access, including philanthropy, research and industry partnerships, stakeholder action, and legislative changes that promote equitable access models. This provocative investigation of the human right to science is salient to people with disabilities. Issues addressed in this chapter link a human rights framework to economic aspects that drive access to important technologies through social systems and medical institutions. The human right to science can shift the focus from medicine and healthcare toward consideration of how science and technology can have an impact on improving everyone’s lives, especially people with disabilities.

WHAT IS THE HUMAN RIGHT TO SCIENCE? One human right that has not received significant attention among sociologists, as well as other scholars of human rights, is the human right to science. While the human right to science is articulated in the Universal Declaration of Human Rights (1948) and the ICESCR, Article 15 of the UN ICESCR serves as a starting point to ascertaining a definition of the human right to science (UN General Assembly, 1966). Experts have concentrated on paragraph 1(b), which states that everyone has the right to enjoy the benefits of scientific progress and its applications. It is elegantly articulated, but questions may arise about how a national government would implement Article 15 paragraph 1(b) at home. Science pervades nearly all facets of contemporary life and our communities. It is not limited to the public or private sectors, to government, market, and civil society. Just how far does the human right to science extend? A better understanding of the potential impact of the human right to science calls for a working knowledge of UN human rights doctrine, and its influence on nation states. The International Bill of Human Rights consists of the Universal Declaration of Human Rights (UNDHR), the International Covenant on Civil and Political Rights, and the ICESCR. As a Declaration, the UNDHR asks national governments to support ideas and practices articulated in the treaty. The Declaration is not a binding document. However, when a national gov-

586  Research handbook on disability policy ernment ratifies a covenant or convention, that national government commits to implementing the covenant or convention at home, introducing new national laws and changing extant laws to comply with that treaty. Decoupling is the term for when a national government ratifies an international human rights treaty, but fails to implement the treaty domestically. The United Nations does monitor decoupling through universal periodic review, which examines the human rights records of UN Member States, and when Member States file reports with UN committees tasked with monitoring national implementation of particular treaties. The UN Committee on the Rights of People with Disabilities, for instance, monitors national efforts to implement the CRPD. Despite their designation as components of the International Bill of Human Rights, not every national government has ratified the Covenants. As of April 2021, 26 UN members have not ratified the ICESCR, including the U.S. Even though national governments have not ratified particular treaties, experts and political leaders often insist that leaders of those national governments fulfill principles delineated in the treaties (Gran, 2021; Todres et al., 2006; Wotipka & Tsutsui, 2008). Only recently has the human right to science received the attention of the UN Committee on Economic, Social, and Cultural Rights (UNCESCR), national governments, and civil society actors, including questions and debates about how to define the right. In April 2020, the UNCESCR unanimously adopted General Comment 25 on science and economic, social, and cultural rights (Article 15 (1) (b), (2), (3), and (4) of the ICESCR). A General Comment is a document through which a treaty body interprets, elaborates, or adds information about its work or an aspect of the relevant treaty. National governments that have ratified the particular covenant or convention are expected to implement the treaty and its General Comments. The UNCESCR has adopted 25 General Comments as of April 2021; its most recent is the General Comment on the human right to science. In addition to the right to benefit from scientific progress, the General Comment delineates the conservation, development, and diffusion of science, plus the freedom necessary for scientific research and support of international scientific research, as crucial to this human right. According to the UN, each human right matters to a person’s dignity and ability to satisfy physical, psychological, spiritual, or developmental needs. Often, an ability to exercise and fulfill one right depends upon the exercising and fulfillment of another right. The ability to exercise a right to education depends on the freedom of conscience and belief, as well as the rights to health and access to information (United Nations Population Fund, 2005). Therefore, to interpret and implement the human right to science requires the consideration of a wide range of human rights. Attention to the human right to science among scholars and experts has increased in the past decade, evidenced by a significant number of publications ranging from defining the right to its application across a wide array of topics including entrepreneurial rights, technologies such as CRISPR, children’s rights, water and sanitation public policy, and international environmental law to name a few (Aerni, 2015; Besson, 2015; Boggio & Ho, 2018; Boggio & Gran, 2021; Gran, 2021; Gran et al., 2013; Marks, 2014; Wyndham & Vitullo, 2018). Little attention has been devoted to the human right to science in the context of persons with disabilities (Bryden, 2021), warranting investigation of this right’s utility in advancing disability and technology policy.

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MODELS OF DISABILITY Engaging the human right to science as a strategy for reducing barriers to technology is contingent on understanding how disability is conceptualized across different sectors of society. Knowledge about various ways in which disability is conceptualized in society is important for understanding languages spoken by stakeholders across manifold institutions involved in technology development and procurement. Disability is both a personal and a social experience. As disability is commonly associated with an impairment in the health state (Shakespeare, 2012), people with disabilities encounter experiences influenced by healthcare institutions and practices that are dominated by medical model perspectives and lacking in social interventions. Historically, disability scholars have compared the medical model of disability to the social model of disability to contextualize the experiences of people with disabilities in society (Lynch, 2013; Oliver, 2013; Sabatello, 2014; Shakespeare, 2012; Thomas, 2012). The medical model casts disability as a condition to be treated, remediated, and when possible cured. The subtext within this model is that disability is an undesirable state that should be avoided. Conversely, the social model conceptualizes disability as constructed by society rather than an individual deficit (Oliver, 1996, 2013; Shakespeare, 2013). This model recognizes the environment and lack of adaptations as disabling components for people with disabilities, and identifies persons with disabilities as experts in their own needs rather than health professionals (Lynch, 2013; Oliver, 1996, 1998; Shakespeare, 2013). In the real world of people with disabilities, there is significant interaction between individual impairments and social environment, making rigid adherence to either the medical model or the social model unrealistic and ultimately unproductive (Magasi, 2008). Unfortunately, knowledge about disability models varies across stakeholders involved in technology access. A large majority of health professionals are unaware of the social model of disability and critical disability studies scholarship (Bricher, 2000; Linton, 1998; Magasi, 2008). Aspects of both the medical and social models of disability must be considered to adequately address the complexity of disability in society. Expansion of knowledge across all stakeholders offers new opportunities for maximizing access to technology. Many health professionals have a working knowledge of the World Health Organization’s (WHO) ICF (WHO, 2001). It is widely used by health professionals and other stakeholders in rehabilitation and health policy as a tool to classify dysfunction, guide intervention, and structure the interpretation of outcomes across the spectrum of deviations in the healthcare state, whether acute, temporary, or chronic (Bryden et al., 2005; Cieza et al., 2010). The ICF departs from a wholly medical model perspective by reducing negative, deficit-laden terminology and incorporating social factors. While the ICF’s primary goal was to develop a framework of uniform terminology for describing and classifying health states (WHO, 2001), two significant advancements separate it from its predecessor, the International Classification of Impairment, Disability, and Handicap. First, the ICF makes space for describing not just health domains, but also the impacts of health-related components of well-being, including personal factors and the environment. Second, its transformation from a “consequences of disease” classification to one that focuses on “components of health” offers a perspective from which stakeholders can draw conclusions based on their perspectives and research or treatment goals (WHO, 2001, p. 4). This framework acknowledges health at any stage of ability, with the understanding that removal of a disability, or return to a former health state is not always possible, nor always the goal – a challenge to ableism as the normative ideal.

588  Research handbook on disability policy While the ICF does not explicitly use rights-based terminology, many principles of human rights are inherent in its approach toward the classification of health and functioning. This is not coincidental, given the parallel timing of the ICF’s development and the advent of the UNCRPD, both likely influenced by the international disability rights climate at the time. In the decade leading up to the ICF and CRPD, the UN gave significant attention to issues of disability, including the Vienna Declaration and Programme of Action of 1993, adoption of the Standard Rules on the Equalization of Opportunities of Persons with Disabilities, and the UNCESCR’s General Comment on “Persons with Disabilities” (Bickenbach, 2011; Sabatello, 2014). The ICF, with its inherent human rights principles and structure that bridges the gap between the medical and social model, can be an instrumental framework for facilitating access to technologies by people with disabilities, especially given its popularity among health professionals and ancillary stakeholders who are key agents in the process of facilitation. However, a more explicit human rights model of disability, used in conjunction with the ICF, offers an innovative approach for incorporating policies in alignment with principles sanctioned by the human right to science.

HUMAN RIGHTS MODEL OF DISABILITY A novel conceptualization of disability from a human rights perspective is important for advancing the human right to science. Principles of human rights can transform how disability is conceptualized by transcending the medical–social model divide and bridging issues of individually experienced impairment with socially experienced barriers. A human rights model of disability has been offered as an extension of the social model of disability (Degener, 2016). Following the eight guiding principles of the CRPD, this model promotes human rights as fundamental rights, including the inherent human dignity and autonomy of persons of all abilities. As a component of the human rights model of disability, the human right to science highlights aspects of the model that merit attention. The human rights model of disability illuminates potential advances of this right. Rather than focus on medicine and healthcare, the human right to science calls for attention to how science and technology matter to living together every day. It provokes deliberation on whether and how science and technology can be deployed to improve the lives of everyone, including people with disabilities. While the human right to science will be useful to people with disabilities in medical settings, such as hospitals and rehabilitation centers, it reminds us that people with disabilities are members of our communities and families. When it comes to science and technology, this right matters to every aspect of our lives. Science and technology may foster autonomy, helping individuals to do what they want with their lives and to contribute to their families and communities. Science and technology, on the other hand, may pose risks to everyone’s autonomy. The human right to science can help ensure that everyone can influence the roles and impacts of science and technology in our lives. As part of the human rights model of disability, individuals can call on their governments to implement this right and other human rights as a means of assuring societal membership. Engaging the human right to science and all principles of human rights in policies that promote complex rehabilitative technologies is increasingly important in the current landscape of technology and neurotechnology translation.

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CURRENT STATE OF TECHNOLOGY AND NEUROTECHNOLOGY: DISCOVERY TO TRANSLATION In the past 60 years, medical science and technology have been advancing at an accelerated rate (Famm et al., 2013; Jorgenson et al., 2015). Yet, systems and mechanisms for translating these discoveries from laboratory to marketplace have not kept pace due to regulatory, financial, and sociocultural issues. In the industrialized world, much of scientific discovery occurs in academic research settings, yet access is in the hands of industrial enterprises. For example, U.S. research and development of technology is supported primarily by public funding from agencies such as the National Institutes of Health or National Science Foundation. These funding mechanisms focus on early discovery and development research regardless of market size or commercial potential. Funding structures in place today emerged from post-World War II politics, where the U.S. government prioritized basic research over the development of research applications such as technology (Chapman, 2009; England, 1976), creating a philosophy that values advancing scientific knowledge over the application of such knowledge (Chapman, 2009). Public funding advances technology to the point of launching a commercial product, but its commercial success is the responsibility of organizations in a market-based environment. Subsequently, applications of scientific knowledge and presumably provision of technology services became the responsibility of private industry. The gap between academic institutions that innovate and commercial institutions that are meant to translate is known as the “valley of death,” an arbitrary space within which promising discoveries never find their way to people for whom they were intended (Barrable et al., 2014; Coller & Califf, 2009; Meslin et al., 2013). Bridging this gap is not a trivial exercise and is even more evident for medical technology. Barriers are widespread from access to capital, hurdles for regulatory approval, lack of health economic evidence, and concerns of intellectual property protection (Plagnol et al., 2009). Many funding agencies have programs that support translation through small business research and development; however, these mechanisms are exhausted in the final development stages of pivotal trials collecting necessary evidence for regulatory approval and third-party payment. Consequently, promising technologies succumb to market forces. However charitably minded, commercial institutions are dependent on profit for success in market-based healthcare systems. Therefore, interest in investing in expensive technology for small populations wanes due to poor profit potential, inadequate reimbursement, and a lack of government policies that would promote private–public partnerships to support technology provision. Inadequate policies reinforce the phenomenon of fleeting access to technology for reasons unrelated to efficacy and safety, posing questions about human rights and the human right to science. Funding the development of life-enhancing technologies only to have them fail in translation does not contribute to the betterment of people with disabilities. Challenges and Failures of Translation The Northstar Neuroscience story demonstrates economic and systemic barriers that prevented the commercial availability of a useful technology. Financial factors such as limited profit margins not only sabotage future commercial availability, but can halt the completion of clinical trials before the benefits of interventions are realized. Below are additional examples of challenges encountered in advancing the human right to science and technology.

590  Research handbook on disability policy Genomics Technology translation is hampered by discordant processes resulting in considerable time delays from bench to bedside. The science of genomics translation, with few exceptions, takes 25–30 years from discovery to delivery. In the U.S. much of the discovery was through a concerted effort of the Human Genome Project and mainly funded by the National Institutes of Health. Despite promising discoveries, marshaling technology step by step through the laborious decision-making processes of translation spanned many years (Hernandez et al., 2008). Neurotechnology The Freehand System, a commercialized system for restoring arm and hand function in people with spinal cord injury, was transferred from a research trial at Case Western Reserve University to industry in 1997 and was implanted in over 200 individuals internationally. Despite its clinical successes, the company ceased marketing the device in 2001 due to negative profit margins from an unsustainable business model for a small disability group (Bergstein, 2015). Nearly a decade later, the intellectual property was transferred back to the university, and a novel model of translation was developed. The Institute of Functional Restoration, a non-profit organization within the university, maximizes grants, philanthropy, and insurance reimbursement to deliver this technology. Complex rehabilitation technology The iBOT power wheelchair with curb and stair-climbing capabilities was developed by a company, DEKA, in the 1990s. The wheelchair entered clinical trials in 1999 and received FDA approval in 2003. Johnson & Johnson, a large medical supply provider, later became the manufacturer of record. Unfortunately, by 2009, production of the iBOT was discontinued for cost reasons, despite the highly desired technology’s effectiveness. Only a few hundred were sold per year at a retail price of about $25,000 USD, similar to prices of other conventional power wheelchairs, of which Medicare paid $5,000. The intellectual property was later transferred and Mobius Motility is bringing the technology back to the market. These challenges and failures of translation beg the question: Is investment made by public funds yielding benefits to public health? Significant expansion of health and medical innovations and applications of scientific knowledge have occurred since World War II when policies for research and development emerged in the U.S., far exceeding what could have been imagined at that time. Current U.S. payment models for the provision of medical and rehabilitative services have undergone rapid transformation, including the advent of Medicare and Medicaid, which were incorporated into the Social Security Act in 1965 (Hoffman, 2009). Given the complexity of disability, inefficacious payment and reimbursement policies, and rapid technological advancements, policy barriers to technology access are unsurprising. An unfortunate consequence is the inability of some social groups, such as people with disabilities, to benefit from scientific progress and its applications, even when technology was specifically designed and developed to address their needs. As an integral part of a human rights approach to ensuring access to science, it is time to investigate new roles and obligations of all stakeholders in bettering lives of people with disabilities through technology.

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THE ROLE OF STAKEHOLDERS IN ACCESS TO NEUROTECHNOLOGY Neurotechnology can be defined as “the assembly of methods and instruments that enable a direct connection of technical components with the nervous system” (Müller & Rotter, 2017, p. 1). Examples of neurotechnologies include cochlear implants to address hearing impairments, deep brain stimulators to address tremors due to Parkinson’s disease, dystonia, or essential tremor, and electroencephalogram for the diagnosis of epilepsy or Alzheimer’s disease. In the context of disability, many of these technologies are deployed and maintained within medical settings, yet the daily use of neurotechnologies is within the social context. Subsequently, there are a variety of stakeholders involved in the development, application, and deployment of neurotechnologies, who are in a position to advance the human right to science.

Note: There is a complex web of relationships with various stakeholders who have a potential role in advocating for the human right to science. In neurotechnology, stakeholders are more often influenced by the medical model. As technologies become more available and accessible the social context is more salient. PWD, people with disabilities.

Figure 49.1

Neurotechnology: people living with disabilities serve in several roles and engage with a variety of stakeholders

As shown in Figure 49.1, the web of stakeholders influential in neurotechnology is neither linear nor circular, but based in complex relationships. Stakeholder categories include personal, technical, medical, and societal. Regardless of category, each stakeholder can advance the human right to science by raising awareness, influencing policy, and incorporating rights in programming. In this context, the array of stakeholders can draw attention toward a collaborative and coalition approach for policy change.

592  Research handbook on disability policy Personal Stakeholders Personal stakeholders are influencers consisting of family members, spouses, friends, employers, or caregivers who are personal supports within the person’s sphere of daily living. Members within this category often have deep engagement in the evaluation process, daily use, and maintenance of neurotechnologies. While personal stakeholders are critical to advancing the human right to science, effectively exercising this right requires knowledge and familiarity with its policies, processes, and frameworks. Technical Stakeholders Technical teams may consist of engineers, developers, distributors, manufacturers, and facilities that have influence accessing neurotechnologies in contexts of the initial adoption, maintenance, and availability of devices. Technical stakeholders may marshal an innovation in the translational process from laboratory to market availability and can lobby government officials, industry leaders, and policy makers to implement the human right to science. Medical Stakeholders Medical stakeholders are the largest and most diverse category (French, 2015), consisting of an array of health professionals. Given their prominence and professional prestige, providers can serve as powerful advocates for the human right to science. In organized health systems, administrators can influence access to clinical care teams. Administration is crucial to ensuring that people with disabilities can exercise their human right to science and that organizations take this human right seriously. Societal Stakeholders Societal stakeholders can shape perceptions as well as access to neurotechnology. Government agencies can include regulatory systems controlling the distribution of technology. Non-governmental organizations such as disability-related foundations and consumer organizations are often instrumental in helping people with disabilities access information and resources. Finally, the media can make an impact across many platforms by influencing the expectations, education, and motivations of people with disabilities. The media holds responsibility for sharing information about the human right to science, its utilities, and how to exercise this human right. The diversity of these stakeholder groups has the potential to bridge the medical and social models within the processes where neurotechnologies are procured, aligning with the ICF framework’s attention to social factors. However, in the current climate of technology provision, there is a proclivity toward the medicalization of processes due to linkages with insurance coverage in the U.S. market-based healthcare system. In this context, diversity in stakeholder perspectives serves as an opportunity to advance the human right to science, particularly among health professionals, and ultimately promotes a human rights approach to disability and neurotechnology access.

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RIGHTS-BASED SOLUTIONS FOR TECHNOLOGY ACCESS Bridging the Translational Gap In comparison to other nations’ healthcare systems, the U.S. system is characterized as part of the liberal welfare regime. Esping-Andersen’s (1999) typologies of welfare states and welfare regimes are organized around four types: liberal, conservative, Mediterranean, and social-democratic. The liberal approach is characterized as minimal government support, the promotion of market solutions, such as employer-sponsored and individually purchased health insurance, and the individualization of risks. Other scholars have challenged Esping-Andersen’s typology, including when it comes to the liberal welfare regime. In The Hidden Welfare State, Howard (1999) points out the significant roles tax expenditures, such as tax credits and tax deductions, play in the U.S. welfare regime. For U.S. healthcare, which is among the most expensive in the world, total tax expenditures exceed the total costs of Medicare and Medicaid, the two major, public health insurance systems (Center on Budget and Policy Priorities, 2020). According to the U.S. Treasury (2020), the exclusion of employer contributions for medical insurance premiums and medical care from taxes costs Americans US$191,350 million. A correction to the application of Esping-Andersen’s liberal regime typology to the U.S. should emphasize how its healthcare system promotes inequality while failing to provide care to all Americans who need it. What is questionable is whether Americans have not only a legal right to healthcare, but access as a human right as well. Philanthropy and other charitable approaches factor largely in healthcare systems that exist in a liberal welfare regime that is characterized by minimized state or government support (Esping-Andersen, 1999). The United States’ tax policy permits individual taxpayers to deduct charitable contributions from their taxable income, up to 60 percent of adjusted gross income annually with excess amounts allowed for future deductions up to five years (Urban Institute & Brookings Institution, 2022). These charitable deductions add up and are estimated to be in excess of US$56 billion in 2020 (Hartmann, 2020). In comparison, the Children’s Health Insurance Program cost $19.84 billion, about 35 percent of charitable deductions (Medicaid & CHIP Payment and Access Commission, 2021). Through widespread use of tax expenditures (Howard, 1999), including tax deductions and credit, not only does the U.S. national government forego revenue, but members of U.S. society also forego their abilities to use democracy to hold elected officials accountable in how they finance U.S. healthcare and other endeavors. As illustrated, the U.S. approach of supporting the research and development of technological innovations, yet relying on industry for dissemination and translation, leaves vulnerable populations underserved. Liberal welfare regimes foster a reliance on philanthropy and other non-governmental sources to fill in where governmental support or personal wealth are lacking. One example is venture philanthropy and impact investing (VPII). The core definition of VPII is the investment from non-profit and disease research organizations for a return on investment to fulfill their mission. The principles of venture capital financing and the business of technology transfer are applied to philanthropic purposes. To this end, rather than funding a charitable grant, VPII seeks a return on investment and operating efficiencies in high-risk stages of technology commercialization. VPII having a high-risk tolerance is a hallmark of the model such as supporting new experimental approaches, capacity building, or intellectual capital. Traditional venture capital investment expects a financial return. VPII has the same

594  Research handbook on disability policy expectations but may also accept a social return on investment such as outcomes that contribute to the betterment of persons with disabilities. While VPII can serve as an emerging stop-gap for the “valley of death” between technology development and commercialization, it does not go far enough in advancing the human right to science for people with disabilities. Given that medical technologies are not available unless a commercial entity is involved, regardless of the type of healthcare system, market forces and economics drive access rather than human rights. The incorporation of government policies combined with private third-party payment entities as well as commercial and philanthropic partners to fulfill the technology needs of people with disabilities shows promise for improving access. This seems to be a best case scenario in the U.S.’s welfare system, where reliance on commercial and philanthropic entities is necessary to supplement inadequate government support. However, human rights perspectives are lacking since individuals do not possess a human right to VPII. Incorporating human rights as a primary focus is necessary to develop alternative access models that better fit the needs of people with disabilities and advance their human right to science. Promoting Human Rights Literacy Across Stakeholders Despite knowledge and utilization of the ICF in research and practice, health professional stakeholders are largely unaware of human rights principles and how they may be efficacious in advocating for technology access (Bryden, 2020). Human rights literacy is defined as “engagement with the history, values, concepts, key documents, and organizations integral to democratic values and inspirations, especially the norms of human dignity, equality, inalienability, and justice” (Weeramantry, 1997, p. 162). As noted earlier, low human rights literacy in the U.S. arises from cultural inattention to the collective nature of human rights and non-ratification of key UN conventions. Regardless, opportunities exist to expand awareness and influence cultural perspectives at the level of stakeholders. Incorporating human rights literacy in one’s cultural perspective fosters a greater vision of diversity within one’s social experiences (Vellino, 2004), and influences actions undertaken to advocate for technology access. Education is the first step in advancing awareness of the human right to science and adoption of a human rights approach toward disability. Greater awareness across all stakeholders can lead to utilization of human rights principles when advocating to decision-makers about funding for technology. A number of different approaches may be taken to advance human rights knowledge. Information can be disseminated to key stakeholders through various consumer groups, governmental, non-governmental, and for-profit organizations. Human rights ombudspersons can play a unique role by holding seminars and forums with the organizations (Gran, 2020). To reach the large group of health professional stakeholders, educational information can be shared through professional societies, licensure or certification entities (Jovic Vranes et al., 2015), or annual ethics training programs that are mandated by many institutions. Practical information can also be shared, such as how to write letters of medical necessity, often required of health professionals to justify patients’ technology needs to payers, that include human rights and the right to science-based terminology. These approaches can also be employed in other stakeholder groups. For example, information about the human right to science can be shared with technical stakeholders such as developers of technology through engineering and related professional organizations. The lack of literature on human rights awareness in

Disability and human rights  595 stakeholders engaged in technology provision indicates a need for further investigation of approaches to raise human rights awareness. Promoting Human Rights-Based Access Models Novel and innovative medical technologies tend to be expensive and intensive. Specialized interventions often lack equitable distribution due to discriminatory structures. For example, spinal cord stimulators in the U.S. are more frequently offered to affluent, privately insured white males over black women (Missios et al., 2014). To that end, human rights-based models that foster equitable access to complex technology for people living with disabilities are imperative in offering hope to providing access to medical technologies and specialized interventions. Such models can be shaped by principles and articles espoused within the CRPD and the human right to science. Principles of non-discrimination, full and effective participation in society, and equality of opportunity would ensure that people of all races, genders, and socioeconomic statuses enjoy access to technology such as pacemakers. Additional principles of respecting inherent dignity and individual autonomy foreground individuals’ freedoms to make their own choices about technologies, and control over the processes by which information and access is obtained. The principle of respecting the differences of persons with disabilities, and accepting these differences as part of human diversity and humanity, calls for the right of persons with disabilities to choose whether or not to pursue interventions and technologies based on their disability identity. In essence, for those who desire and need access to technologies, equitable models must be in place to reduce barriers. Attention is needed to develop actionable steps within technology access models that are built on the principles of the CRPD and the human right to science. Governing legislation and policies are tools to guide societal actions for equitable access to technologies through regulation, funding, or systematic changes. The U.S. Assistive Technology Act of 2004 ensures that all states and territories receive funding toward programs that promote information and access to assistive technologies (Assistive Technology Act of 2004, 2004). Programming arising from this funding includes Georgia’s Assistive Technology Act Program, Tools for Life, facilitating access to assistive technology and services by offering funding information, access to technology experts, and even an assistive technology trial/loan program. Other states offer low-interest loans, such as Massachusetts’ Assistive Technology Loan Program for people with disabilities. Various services are available from certified independent living centers and vocational rehabilitation programs, which often focus on facilitating access to technologies by people with disabilities. Additionally, the landmark 21st Century Cures Act in the U.S. includes impactful changes for accessing advances in technology (Gabay, 2017; Rodriguez et al., 2020). This legislation explicitly directs medical research toward diversity of sex, gender, race, and other factors within human clinical trial research. It also promotes an FDA regulatory review of new drugs and devices to include real-world evidence, including registry data, patient input, and observational studies. This legislation provided funding for medical and neurotechnology development and translation, such as additional funding for the BRAIN (Brain Research Through Advancing Innovative Neurotechnologies) Initiative. Finally, the WHO’s Global Cooperation on Assistive Technology takes a human-rights approach in their vision of “A world where everyone in need has access to high-quality, affordable assistive products to lead a healthy,

596  Research handbook on disability policy productive and dignified life” (Cooper, 2017; World Health Organization, 2021). This cooperative has identified the 50 most critical assistive technologies and has developed progress indicators to collect data from all Member States to track and measure progress in assistive technology access. These policies and approaches are based on varying levels of disability advocacy, but not explicitly on principles of human rights. While these approaches represent significant advancements in recognizing problems of technology access within underserved populations, adding explicit human rights principles can enhance success at promoting equality. Moving forward, the human right to science and other principles of human rights can foster additional innovation to break down barriers accessing technologies.

CONCLUSION This chapter provides an overview of prevalent, yet largely unknown barriers preventing people with disabilities from accessing technologies that facilitate their thriving in the communities in which they live and work. Complementing barriers of cost, market, and regulatory structures restrict access to technologies for reasons unrelated to safety or utility to people with disabilities. Complexities of dissemination and access rival the complexity of science and innovation. The current state of access requires creative policies that incorporate principles of human rights, to create novel and effective access models. The human right to science shows promise as an antidote to ineffective processes and inadequate policies for technology access, and is wholly reliant on expanding human rights literacy in personal, technical, medical, and societal stakeholders. Educating stakeholders about human rights and the “hidden” barriers of technology translation is critical for a thorough understanding of problems experienced by people with disabilities, setting the stage for effective solutions. Despite public and private sector actions to expand technology access, there is an absence of effective policies to broadly promote access to technology by people with disabilities. Investigating human rights-based solutions, specifically the human right to science in tandem with the CRPD and other human rights treaties, is critical to promoting a cultural shift in how barriers to technology are viewed and policies are created by stakeholders. Human rights-based solutions can transform the lives of people with disabilities. Building human rights principles into existing models and frameworks already familiar to many stakeholders, such as the ICF and the social model of disability, is essential to the cultural transformation of processes and policies for technology procurement. Research is necessary for identifying the most effective ways to incorporate the human right to science into pragmatic actions and effective human rights-based access models, for those who want and desire technologies. The human right to science as a guiding framework has great potential to transform policies within social systems and institutions that structure access to important technologies for people with disabilities. Most importantly, the human right to science shines a light on the importance of science and technology in our daily lives, and its salience to people with disabilities not just in healthcare settings, but in the communities where they live and thrive. The human right to science matters to every aspect of our lives by fostering dignity and inclusion for all members of society, regardless of ability.

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REFERENCES Aerni, P. (2015). Entrepreneurial Rights as Human Rights: Why Economic Rights Must Include the Human Right to Science and the Freedom to Grow Through Innovation (SSRN Scholarly Paper ID 3229158). Social Science Research Network. Assistive Technology Act of 2004. Pub. L. No. 108–364 (2004). Barrable, B., Thorogood, N., Noonan, V., Tomkinson, J., Joshi, P., Stephenson, K., Barclay, J., & Kovacs Burns, K. (2014). Model for bridging the translational “valleys of death” in spinal cord injury research. Journal of Healthcare Leadership, 6, 15–27. Bergstein, B. (2015, April 9). Paralyzed again. MIT Technology Review. Besson, S. (2015). Science without borders and the boundaries of human rights: Who owes the human right to science? European Journal of Human Rights, 4, 462–485. Bickenbach, J. E. (2011). Monitoring the United Nations Convention on the Rights of Persons with Disabilities: Data and the International Classification of Functioning, Disability and Health. BMC Public Health, 11(Suppl 4), S8. Boggio, A., & Gran, B. (2021). A proposal for indicators of the human right to science. In The Right to Science: Then and Now, edited by H. Porsdam and S. P. Mann (pp. 268–285). Cambridge, UK and New York: Cambridge University Press. Boggio, A., & Ho, C. W. L. (2018). The human right to science and foundational technologies. The American Journal of Bioethics, 18(12), 69–71. Bricher, G. (2000). Disabled people, health professionals and the social model of disability: Can there be a research relationship? Disability & Society, 15(5), 781–793. Brown, J. A., Lutsep, H., Cramer, S. C., & Weinand, M. (2003). Motor cortex stimulation for enhancement of recovery after stroke: Case report. Neurological Research, 25(8), 815–818. Bryden, A. M. (2020). Navigating Resources after Spinal Cord Injury: The Utility of Human Rights. Case Western Reserve University School of Graduate Studies. Bryden, A. M. (2021). The human right to science and disability. Societies Without Borders, 15(1), 2–5. Bryden, A., Sinnott, K. A., & Mulcahey, M. J. (2005). Innovative strategies for improving upper extremity function in tetraplegia and considerations in measuring functional outcomes. Topics in Spinal Cord Injury Rehabilitation, 10(4), 75–93. Center on Budget and Policy Priorities. (2020). Policy Basics: Federal Tax Expenditures. https://www ​ ​ .cbpp.org/research/federal-tax/federal-tax-expenditures. ​ ​ ​ ​ ​ ​ ​ Chapman, A. R. (2009). Towards an understanding of the right to enjoy the benefits of scientific progress and its applications. Journal of Human Rights, 8(1), 1–36. Cieza, A., Kirchberger, I., Biering-Sørensen, F., Baumberger, M., Charlifue, S., Post, M. W., Campbell, R., Kovindha, A., Ring, H., Sinnott, A., Kostanjsek, N., & Stucki, G. (2010). ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord, 48(4), 305–312. Coller, B. S., & Califf, R. M. (2009). Traversing the valley of death: A guide to assessing prospects for translational success. Science Translational Medicine, 1(10), 1–5. Cooper, R. A. (2017). Commentary on WHO GATE Initiative. The Journal of Spinal Cord Medicine, 40(1), 2–4. Degener, T. (2016). Disability in a human rights context. Laws, 5(4), 35. England, J. M. (1976). Dr. Bush writes a report: “Science: The Endless Frontier”. Science, 191(4222), 41–47. Esping-Andersen, G. (1999). Social Foundations of Postindustrial Economies. Oxford: Oxford University Press. Famm, K., Litt, B., Tracey, K. J., Boyden, E. S., & Slaoui, M. (2013). A jump-start for electroceuticals. Nature, 496(7444), 159–161. French, J. (2015). Consumer acceptance of implantable neuroprostheses. In Implantable Neuroprostheses for Restoring Function, edited by K. Kilgore (pp. 395–412). Cambridge, UK: Elsevier/Woodhead Publishing. Gabay, M. (2017). 21st Century Cures Act. Hospital Pharmacy, 52(4), 264–265. Gran, B. (2003). A second opinion: Rethinking the public–private dichotomy for health insurance. International Journal of Health Services, 33(2), 283–313. Gran, B. (2020). Children’s Ombudspersons in the United States. Societies Without Borders, 14(1), 1–10.

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Disability and human rights  599 Todres, J., Wojcik, M. E., & Revaz, C. R. (Eds.). (2006). The U.N. Convention on the Rights of the Child: An Analysis of Treaty Provisions and Implications of U.S. Ratification. New York: Transnational Publishers. UN Committee on Economic, Social, and Cultural Rights. (2020). General Comment No. 25: Science and Economic, Social and Cultural Rights. UN General Assembly. (1966). International Covenant on Economic, Social and Cultural Rights. UN General Assembly. (2006). The Convention on the Rights of Persons with Disabilities. United Nations Population Fund. (2005). Human Rights Principles. https://www.unfpa.org/resources/ ​ ​ ​ ​ ​ ​ ​ human-rights-principles. Urban Institute, & Brookings Institution. (2022). The Tax Policy Center’s Briefing Book. Tax Policy Center. https://www.taxpolicycenter.org/briefing-book/what-tax-treatment-charitable-contributions ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ U.S. Treasury. (2020). Tax Expenditures. https://home.treasury.gov/system/files/131/Tax-Expenditures ​ ​ ​ ​ ​ ​ ​ ​ ​ -FY2022.pdf. ​ Vellino, B. C. (2004). Everything I know about human rights I learned from literature: Human rights literacy in the Canadian literature classroom. In Home-Work: Postcolonialism, Pedagogy, and Canadian Literature, edited by C. C. Sugars (pp. 135–150). Ottawa: University of Ottawa Press. Weeramantry, C. G. (1997). Justice Without Frontiers: Furthering Human Rights. Alphen aan den Rijn: Kluwer Law International. World Health Organization. (2001). International Classification of Functioning Disability and Health. World Health Organization. World Health Organization. (2021). Global Cooperation on Assistive Technology (GATE). World Health Organization. https://www.who.int/news-room/feature-stories/detail/global-cooperation-on-assistive ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -technology-(gate) ​ Wotipka, C. M., & Tsutsui, K. (2008). Global human rights and state sovereignty: State ratification of international human rights treaties, 1965–2001. Sociological Forum, 23(4), 724–754. Wyndham, J. M., & Vitullo, M. W. (2018). Define the human right to science. Science, 362(6418), 975.

50. Chasing a runaway train: disability policy grapples with accelerated prenatal genetic technologies Kara B. Ayers and Monica C. Schneider

Noninvasive prenatal testing (NIPT1) is a maternal blood test utilized to screen for different genetic disabilities and other characteristics of the fetus, like sex. NIPT analyzes circulating cell-free DNA, which originates from a pregnant woman’s2 placenta, to screen for genetic conditions in the fetus. its usage has grown exponentially since it was first clinically available in 2011 and it is now available in over 90 countries (Griffin et al., 2018). It offers several benefits compared to previous methods of screening, including amniocentesis. Women can receive NIPT earlier (between weeks 9 and 11) than most conventional screening methods. NIPT also has better detection rates for genetic anomalies and carries no risk of miscarriage (Zaami et al., 2021). Doctors, patients, ethicists, and disability rights activists alike have multiple concerns about the widespread proliferation of NIPT (Denbow, 2020; Parham et al., 2017), especially since the consensus on ethical guidelines and policy development has largely not matched the pace of this technology’s development. Governments must consider whether the advent of this technology warrants new public policies or changes to existing policy to bring the policy into alignment with the human rights of people, and potential people, with disabilities.3 Key stakeholders to consider in this policy development are doctors, genetic counselors, parents – especially mothers – people with disabilities themselves, and companies who manufacture the tests. When convening these stakeholders, consideration of differing objectives (e.g. profits for companies who develop tests) is critical. Important public policy considerations include whether the tests should be restricted and who should pay for the tests since the for-profit manufacturers of the tests have an interest in the highest possible testing uptake. Parents who are deciding to get a test, and subsequently whether they act on test results, might be particularly affected by a country’s policies on abortion rights, the availability of information about disability, and the strength of the social safety net. The United Nations (2006) calls for protection of the fundamental right of people with disabilities to life. Crucially, policies should respect the fundamental right of people with disabilities to exist. In this chapter, we offer an overview of the NIPT test and its benefits and drawbacks, a synthesis of cross-cultural public attitudes and policy regarding the test, and a disability justice perspective as a way to illuminate the risks of silencing the rights-based claims of people with disability to be valued and lead meaningful lives. We conclude with a set of recommendations and future directions.

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NONINVASIVE PRENATAL TESTING: OVERVIEW AND IMPLICATIONS Overview and Benefits Doctors, clinicians, and parents use NIPT to provide probabilistic information about an ever-growing list of genetic anomalies, including chromosomal disorders, such as Down syndrome, cystic fibrosis, and variants caused by changes in single genes (Parham et al., 2017). The test can also detect paternity as well as conditions in the mother. Although the accuracy of NIPT is an improvement upon earlier testing options, it is still classified as a screening test because its diagnosis is not definitive and should not be utilized as such. Rather, the test estimates whether the risk of having a condition is increased or decreased. If used as a second line test for women already identified by serum screening as having a greater chance (higher than 1:150) of having a child with Down syndrome, it is 91% likely to identify a fetus with Down syndrome correctly (Mackie et al., 2017). For women from the general population, that positive predictive value decreases to less than 82%, which means that 18 out of 100 women’s results indicate their fetus has Down syndrome when the fetus is unaffected, though NIPT is even less accurate for other trisomies (Mackie et al., 2017). NIPT can result in false positives, where results have indicated an increased risk but the fetus does not in fact have the genetic anomaly, and false negatives, where results indicate a decreased risk for genetic anomaly but the fetus is affected. NIPT is most commonly used to detect chromosomal disorders but the technology can also detect sex and a number of non-medical traits, including intelligence. The prospect of sequencing the whole genome of a fetus is increasingly realistic and likely imminent (Minear et al., 2015a). A study by Bowman-Smart et al. (2019) found variability among women in their interest towards NIPT for conditions other than chromosomal trisomies: more than 65% of the women surveyed reported interest in NIPT to screen for Deafness and autism. In another study by Vanstone et al. ‘almost all participants were able to identify a scenario where NIPT could be used for something they felt should be restricted or prohibited through regulatory means’ (2018, p. 7). In fact, many women expressed ambiguity about how to prioritize self-determination and bodily autonomy while avoiding what some saw as frivolous healthcare spending with potentially negative impacts (Vanstone et al., 2018). There are several benefits to prenatal testing (Ralston et al., 2001). Learning about a prenatal diagnosis can give a family time to prepare and plan for necessary medical services (Michie, 2020). There are an increasing number of prenatal and postnatal medical interventions that can potentially improve a baby’s outcome or even save their life (Minear et al., 2015a). To get this care, the baby may need to be born at a specialized center or near doctors who can perform rare procedures. For babies who are unlikely to survive, place of birth may also be important to access neonatal palliative care. Prenatal diagnosis sometimes factors into the decisions of pregnant women and their partners about whether to pursue interventions versus palliative or comfort care (Collinge et al., 2020). Expectant parents may engage in psychosocial preparation through research and connections to other families of children with similar diagnoses. Learning of a diagnosis prior to birth can also reduce the harm of receiving news during or shortly after the birth of a baby, which can be a difficult time to assimilate information. Some diagnoses may lead to a prognosis that

602  Research handbook on disability policy a fetus is not anticipated to survive the pregnancy or long after birth. Knowing this in advance can help parents plan and prepare emotionally. Policies Related to NIPT Access Commercialization has fueled the rapid implementation of NIPT. Motivated by profit over ethical considerations, NIPT manufacturers have incentives to make NIPT as widely available, routinized, and unregulated as possible (Denbow, 2020). Within a short timeframe after the launch of NIPT in the United States and Hong Kong in 2011, it had moved to markets in Asia, Africa, Western Europe, the Middle East, and South America (Chandrasekharan et al., 2014). Per a 2015 analysis, test prices varied considerably across countries, ranging from $350 USD in Australia to $2900 USD in the United States with an average price of about $874 USD (Minear et al., 2015b). The commercialization and advent of NIPT raises policy questions about affordability, access, regulation, and need. For some countries, the price remains prohibitive for most people to afford. Given the need to allocate costs effectively, some have questioned whether NIPT merits the investment of government healthcare funding (Minear et al., 2015b; Michie, 2020). Because NIPT is not diagnostic and can produce false results, some countries have adopted NIPT only as a second-tier screening tool to reduce the risk of decisions based on false positives. Countries must consider who should receive the test, who should pay for the test, and whether the benefits warrant the investment. Termination of Pregnancy as an Outcome of NIPT An individual’s autonomy to make an informed choice based on their best interests is cited as an important value of healthcare (Knight & Miller, 2021). There is far less agreement about whether pregnancies should be terminated based on a prenatal diagnosis. Yet, a number of international studies have documented the high rates of termination of pregnancies (estimates range from about 60–90%; Natoli et al., 2012) following a prenatal diagnosis of Down syndrome (Maxwell et al., 2015; Rudolf et al., 2017; Scott et al., 2013). A key consideration in the NIPT debate is how the tests affect termination rates across countries, states, and territories where abortion policy varies widely. Several studies highlight the concern of a reduced prevalence of certain disabilities (Bayón et al., 2019; van Schendel et al., 2017), including some suggestions that in countries like Australia, NIPT has reduced the live-birth rate of babies with Down syndrome to 1.1 from what would be a projected live-birth rate of 2.17 per 1000 between 1980 and 2013 (Maxwell et al., 2015). However, the preponderance of the evidence thus far suggests that the broad adoption of NIPT has not resulted in significant reduction of disability. A review of 14 studies in multiple countries by Hill et al. (2017) found that termination rates following a positive screen for Down syndrome by NIPT are unchanged or decreased compared to previous termination rates. Thus, NIPT may not actually alter the overall number of children born with Down syndrome (Hill et al., 2017). Still, a large-scale population-based study would be necessary to adjudicate concerns over disability population reduction. If NIPT results in an increased termination of pregnancies in response to a prenatal diagnosis, then a longer-term implication of NIPT would be the reduced prevalence of people with some disabilities. There is some concern that this reduction could result in less specialized

Chasing a runaway train  603 care, less research, fewer social supports, and increased discrimination (van Schendel et al., 2017). If a disability is increasingly viewed as preventable, its presence may be further stigmatized, undermining the human rights of people with disabilities.

PREDICTING UPTAKE OF NONINVASIVE PRENATAL TESTING Overview Who chooses NIPT and what are public attitudes regarding these tests? The opinions and attitudes of the public are a critical part of understanding NIPT uptake and its effects. Yet, scholars of public opinion do not fully understand these attitudes, in part because of the many individual- and societal-level factors that contribute to NIPT attitudes. Moreover, given rapid technological change, research in this area intermixes attitudes towards NIPT with attitudes towards other early detection screenings with less accurate technology.4 Qualitative and quantitative studies across a variety of different cultures suggest that most women feel positively towards NIPT, citing its unique features, such as accuracy, reduced risk, and availability early in the pregnancy (Lewis et al., 2013, 2014; van Schendel et al., 2014). Women identify the ability of prenatal testing to help with preparation (Michie, 2020) and reassurance (van den Berg et al., 2005). But women and parents still express concerns over counseling, informed consent, pressure, and the normalization of termination (Lewis et al., 2013; van Schendel et al., 2014) as well as skepticism over the medical technology and cost (Raz & Schicktanz, 2009). Some women reported a preference for having information, while others feared anxiety over anticipating what actions they might take with any new knowledge (Bakkeren et al., 2020; Crombag et al., 2016; van den Berg et al., 2005; van Schendel et al., 2014). Women in one study denied feeling societal pressure in any decision-making, but also identified the potential to feel judged if they terminated or even if they chose not to terminate a pregnancy after a prenatal disability diagnosis (Bakkeren et al., 2020). Attitudes towards Disability The likelihood of NIPT uptake directly relates to attitudes towards disability (Crombag et al., 2013; Parens & Asch, 2003). Cultural norms affect how people view disability, beliefs about causes and treatments, whether care occurs within the family or in institutions, and judgments about the contributions disabled people can make to society (Munyi, 2012; Nielsen, 2012; Ravindran & Myers, 2012). On an interpersonal level, people may experience ambivalence in their attitudes towards people with disabilities (Dunn, 2015; Nario-Redmond, 2020). On the one hand, stereotypes about people with disabilities are that they are warm, but incompetent; this stereotype profile often evokes feelings of pity (Kitayama & Hashizaki, 2018). Policies that may provide some benefit to people with disabilities enjoy a high level of support, but are likely to be reliant on this charity model of support (e.g. Cook & Barrett, 1992; Schneider et al., 2020). On the other hand, negative feelings of anxiety, discomfort, animosity, and judgments of people with disabilities as less than human accompany these feelings of warmth (Dunn, 2015; Nario-Redmond, 2020). Utilitarian ideology – the idea that societies should prioritize the needs of the many over the lives of the few – suggests that people with disabilities

604  Research handbook on disability policy who may require additional societal support should not be allowed the opportunity to live (Brick et al., 2020; Kahane et al., 2018). The ambivalence towards disability is reflected in the variety of attitudes towards NIPT. In studies across many different countries, participants who reported negative judgments about the quality of life of a person with disabilities were more likely to use NIPT (and prenatal testing more generally), while people with positive judgments about disability were more likely to decline NIPT (Crombag et al., 2013, 2016; Kater-Kuipers et al., 2021; Lewis et al., 2014; van Schendel et al., 2014). Contact with a child who had Down syndrome increased the stated likelihood of using NIPT (Lewis et al., 2014). This aligns with Andrews’ social proximity theory (2019) that mere contact with disability does not reduce bias but the type of contact matters; relationships with people with disabilities who have power (i.e. supervisors, teachers, experts) can positively change attitudes while social proximity to people with disabilities with little or no power can have a neutral or negative impact on attitudes towards disability (Shannon et al., 2009). At least one study found that some people simply think that having a child with certain nonviable disabilities costs too much to warrant societal spending (Brick et al., 2020; Kater-Kuipers et al., 2021), while another found that concerns over the quality of life of the parent of a disabled child increased the likelihood of testing and termination (Bryant et al., 2011). In a study of Icelandic parents, fathers, more than mothers, expressed concerns over the costs of having a disabled child (Gottfreðsdóttir et al., 2009). In short, the less ambivalence people have towards a disability such as Down syndrome – and the more certain they are in their negativity towards disability – the more likely they are to test with intent to terminate should the results indicate the presence of a disability (Bryant et al., 2011). Religion A review of many different studies found that religion, values, and overall respect for life made decision-making regarding testing easier (St-Jacques et al., 2008). However, religion was not important in a UK study (Lewis et al., 2014) or in Germany when respondents were considering adult genetic testing (Raz & Schicktanz, 2009). Among ultra-orthodox groups in Israel, women had a more complicated relationship with testing; they rejected screenings and amniocentesis, but accepted ultrasounds. Women relied on rabbinic advice about further testing and, in some cases, received rabbinic permission to terminate. These women described their commitment to accept the challenge of having a child with disabilities if God chose them, while also hoping that their child did not have a disability diagnosis (Ivry et al., 2011). The relationship between religion, the decision to test, and the decision to terminate may vary based on type of religion and how religion combines with other factors. Country-Specific Culture and Policies Models of health choice must consider country-specific policies and cultural norms alongside the variation among individuals in their ambivalence towards abortion, disability, and therefore NIPT. Researchers have yet to explain country-level variation in the uptake of NIPT (or other prenatal testing) (Crombag et al., 2013), in part because the NIPT technology, cost, and availability are ever-changing (Gadsbøll et al., 2020). Country-specific policies surrounding disability, abortion, and the specific rules regarding NIPT use might affect individual attitudes and the collective culture towards NIPT, but of course, the causal arrows are difficult to

Chasing a runaway train  605 untangle since the policies themselves might reflect cultural norms and public attitudes. For example, people in countries with high uptake rates may have positive attitudes towards NIPT because of social pressure and policies that promote easy access to NIPT; conversely, those policies encouraging NIPT may be the result of a culture that values selective abortion over the lives of people with disabilities. Specific policies and cultural norms surrounding disability, abortion, and NIPT seem to correlate with attitudes towards NIPT and behavioral adoption of these tests (St-Jacques et al., 2008). For example, the wide country-specific variation in social policies helping people with disabilities and assisting family members (financially and socially) in caring for children and adults with disabilities contributes to the interest of families in having a child with a disability and NIPT (Gottfreðsdóttir et al., 2009; Ravindran & Myers, 2012). The more help families anticipate in raising their child, the more welcoming they are to a child with disabilities. The cost of NIPT influences attitudes as well. Experimental work demonstrated that Dutch citizens agreed with a mother’s decision to decline NIPT when the cost was not reimbursed by the state (Kater-Kuipers et al., 2021). Clearly cost does not tell the whole story, though, because both the Netherlands and Belgium partially reimburse payment for NIPT, yet Belgium has much higher rates of NIPT (Gadsbøll et al., 2020). Orthodox women in Israel refused prenatal screening, despite the high coverage rate in Israel (Ivry et al., 2011). Country-specific rules about selective abortion, which likely reflect a country’s norms and values, seem to also influence NIPT uptake. Germany, for example, does not allow termination based on a disability diagnosis (Raz & Schicktanz, 2009) and has lower rates of NIPT uptake (Gadsbøll et al., 2020). In contrast, Israel has wide usage of prenatal testing; termination is encouraged (Ivry et al., 2011; Nov‐Klaiman et al., 2019; Raz, 2004). A causal relationship can only be speculative: when people know that they will have the ability to terminate based on a disability diagnosis, they might be more likely to take the test. Again, given the relationship between culture and policies, the causal arrows might be reversed such that the attitudes towards testing and disability causes the policies. Some countries have norms around NIPT and whether or not it is a routine test for parents. In Iceland, for example, parents conveyed that getting prenatal testing (in the case of the specific study the test was nuchal translucency) is ‘just what you do’ (Gottfreðsdóttir et al., 2009). Because Israeli parents view NIPT as part of their responsibility as parents to prepare for their child, compliance with medical testing is high among non-orthodox populations (Nov‐Klaiman et al., 2019). Policies about testing availability might contribute to the idea that NIPT is routine, since countries vary in whether the testing is available to everyone, no one, or only those with high risk markers (Gadsbøll et al., 2020). The introduction of NIPT changes the testing landscape in ways that researchers must be attuned to when studying uptake and termination rates. For example, prior to NIPT, the Netherlands had a very low uptake rate of Down Syndrome Screening (DSS) (27%), even when compared to other northern European countries (Crombag et al., 2013; van den Berg et al., 2005; Verweij et al., 2013). Subsequently, NIPT uptake in the Netherlands is higher than DSS but lower than NIPT uptake in other countries (Gadsbøll et al., 2020; Verweij et al., 2013). In Denmark, invasive prenatal testing increased after the availability of NIPT (Gadsbøll et al., 2020). Taken together, these results suggest that researchers must be careful of which type of test they are studying, how women think of these tests in comparison to each other, and how a particular country’s culture affects uptake.

606  Research handbook on disability policy Certain country-specific cultures warrant additional attention and investigation. Israel, for example, presents an interesting case. Israelis display sensitivity to eugenics given the history of anti-Semitism and the Holocaust and their collectivist culture supports, in theory, people with disabilities once they are born (Raz, 2004). However, many engage in genetic testing prior to marriage to avoid recessive anomalies common among Jews (Ivry et al., 2011). The leaders of Israeli disability organizations do not openly challenge prenatal testing from a disability rights perspective (Raz, 2004), which is exacerbated by the culture of Zionism, which promotes strength as desirable in offspring, whereas disability connotes weakness. Even orthodox women, who consider bearing a disabled child to be a gift from God, still expressed doubt over having a child with a disability (Ivry et al., 2011). Some hesitation might result from the failure of state funding to provide enough resources to care for people with disabilities (Raz, 2004). In sum, despite many cultural factors that would support welcoming children with disabilities, NIPT is routine, paid for by the state, and encouraged by doctors (Raz, 2004; Raz & Schicktanz, 2009), and therefore the end result is that most women agree to NIPT and terminate pregnancies through selective abortion, which is allowed by the state (Raz, 2004). In 2017, an American news station ran a story about the dwindling number of babies with Down syndrome in Iceland due to the high uptake of NIPT and termination rates (Quinones & Lajka, 2017). A deeper look into Icelandic norms suggests that doctors routinize NIPT so that nearly everyone agrees to the testing (Gottfreðsdóttir et al., 2009). Moreover, the rhetoric surrounding NIPT in the media focuses on women’s informed choices, rather than on disability rights or the moral implications of testing and termination (Gottfreðsdóttir & Árnason, 2011). The lack of high-quality and detailed information given to women places the responsibility for information gathering and making decisions on the women themselves (Gottfreðsdóttir & Árnason, 2011). Conclusion The evidence in this section highlights the complexity of predicting NIPT uptake based on attitudes towards people with disabilities and selective termination, within the context of a particular country and culture. More research is needed to truly shed light on variation within and between countries. Many studies of attitudes towards NIPT use qualitative methods to study a population within a specific country; while these methods provide rich description, they cannot generalize to broader populations. More large-N quantitative studies comparing across countries could provide insight into decision-making that would complement the existing body of research.

DISABILITY JUSTICE CRITIQUES NIPT can take place earlier than alternatives such as testing for first trimester serum markers and looking for fetal nuchal translucency via ultrasound (Latendresse & Deneris, 2015), which offers the possibility of discovering a diagnosis earlier in pregnancy. NIPT and its alternatives eliminate the risk of iatrogenic miscarriage caused by more invasive testing, like amniocentesis or chorionic villus sampling. The weighing of risk versus benefit associated with decision-making around these more invasive tests was a standard part of decision-making for pregnant women and their partners, but NIPT tests don’t invoke the same caution and they

Chasing a runaway train  607 are more accurate. Herein lies the first disability rights critique: Without the perceived need to weigh risks and benefits, the consent process for agreeing to the test is less standardized and sometimes eliminated completely if the woman and/or her provider don’t initiate it (Minear et al., 2015a). Women even reported a lack of understanding about the choice to perform prenatal testing, citing that their providers ‘did not talk about it at all’, but presented testing as part of routine care (Gottfreðsdóttir et al., 2009). Women did not think about the test or its implications, nor did their doctors discuss these issues (Nov‐Klaiman et al., 2019). One review of research papers found that women and practitioners alike found that information deficiency about prenatal testing and disability made women’s decision-making more difficult (St-Jacques et al., 2008). Such a lack of information about the test and its implications actually limits women’s ability to say no to the test, undermining women’s reproductive choices (Zaami et al., 2021). Additionally, the rights of people with a disability to exist at all are restricted as a result of these implications. NIPT developers and manufacturers market NIPT with promises to increase the information available to a pregnant woman about her unborn fetus. Indeed, women often identify an expectation of additional information as a reason for agreeing to NIPT (Bakkeren et al., 2020; Lewis et al., 2014; St-Jacques et al., 2008). In the abstract, such informational offerings seem consistent with a disability rights framework, which emphasizes the importance of bodily autonomy as an important precondition of disability justice (Berne et al., 2018). However, many disability advocates argue that NIPT reports, and the ensuing consultation with medical professionals, lack critically important information and perspectives about the lived experiences of people with disabilities and their families (Parens & Asch, 2003). Medical professionals, who almost always interpret results from NIPT for patients, largely view disability as predominantly negative for children and their families (Iezzoni et al., 2021; Nieuwenhuijse et al., 2020; Rothwell et al., 1997), but research on life satisfaction of people with disabilities and their families does not align (Rothwell et al., 1997). Sharing information is additionally complicated by differences in power between a pregnant woman and her healthcare provider. The exclusion of positive information about life as a person with disabilities creates an epistemic injustice, defined as silencing or misrepresenting undervalued groups (Knight & Miller, 2021). Many people who live with the very genetic disabilities that are now identifiable through NIPT are denied epistemic credibility when their claims to a valued and meaningful life are ignored or not believed. By reducing people with disabilities to a single trait (their disability), the majority (nondisabled) community denies the moral significance of a person with disabilities (Parens & Asch, 2003) and contributes to systematically eliminating disability from our society, causing a future in which our communities will be less diverse, less rich, and less inclusive. Finally, disability rights activists raise an ‘expressivist objection’ to NIPT, which is the argument that the message that disabilities, like Down syndrome, are unwanted by our society and thus should be screened out from existence (Parens & Asch, 2003). The profession of genetic counseling is fraught with a eugenic history and many disability advocates have expressed skepticism that truly nondirective (neutral) prenatal counseling can take place within healthcare systems based on the medical, deficits-based model of disability (Clarke, 1992; Sorenson, 2017). In short, a disability rights perspective provides valuable critiques of the supposed informational benefits of NIPT for consideration of NIPT regulatory decisions (Parens & Asch, 2003).

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A NEED FOR ETHICAL AND POLICY GUIDELINES Given the commercialization that has fueled the fast adoption of NIPT combined with the likelihood of its routinization as an expected part of the prenatal experience, we argue for the importance of identifying ethical and policy parameters to guide the use of NIPT. The Nuffield Council on Bioethics, an independent advisory board and working group in the UK, developed an ethical approach to policy development centered on three main values (Shakespeare & Hull, 2018): (1) Reproductive choice; (2) Reduction or avoidance of harm to different individuals or groups; (3) Ensuring equality and social inclusion. A lengthy consensus process that involved diverse stakeholders, including disability rights advocates, resulted in the values prioritized by the Nuffield Council report (Shakespeare & Hull, 2018).

GOVERNMENTAL AND NONGOVERNMENTAL REGULATION Just as attitudes about disability, prenatal testing, and abortion vary widely, so do public policy efforts to address and/or support these issues. Governmental oversight through formal regulatory public policy is one approach to apply safeguards to the application and potential expansion of NIPT. Professional guidelines from medical societies and/or cultural entities (e.g. disability advocacy organizations) frame advice and recommendations for the use of NIPT. Policies and guidelines may be unduly influenced by bias related to disability, abortion rights, and healthcare costs/profits. Chen and Wasserman (2017) argue that less or no regulation of NIPT through public policy will ultimately respect the autonomy of prospective parents. However, their analysis does not consider the impacts of expanded use of NIPT on the disability community beyond the problems associated with line-drawing about which disabilities are considered severe enough to merit acceptability for prenatal screening (Chen & Wasserman, 2017). Chen and Wasserman (2017) conclude that removing governmental influence on NIPT provides a more authentically neutral stance about whether children with disabilities should be brought into the world, but disability advocates dispute the possibility of neutrality in societies built on systemic ableism (Shakespeare & Hull, 2018). Some governmental oversight, like the Down Syndrome Prenatal Education Act (2014), aims to assign genetic counselors the role of interveners between NIPT and potential diagnosis. However, implementation may be hindered by a workforce shortage of certified genetic counselors (Villegas & Haga, 2019). In 2019, there were 683 practicing certified genetic counselors in the southern United States but only 160 of those specialized in prenatal genetics, which is an average of about three genetic counselors per 5000 high risk births in this region (Villegas & Haga, 2019). A workforce projection by Hoskovec et al. (2018) predicts an equilibrium between demand and supply will only be reached between 2024 and 2030. The gap in coverage to underserved areas, however, will likely widen. While legislation may promote greater involvement of genetic counselors, it has not supported training programs to provide more comprehensive, balanced information about what to expect in parenting a child with a genetic disability.

Chasing a runaway train  609 Given the deeply ingrained systemic ableism in every society, it is questionable whether nondirective counseling is even possible (Fine, 2017). A critique by Caplan (2015) argued that ‘[l]egislation like Chloe’s law (a Prenatal Education Act) overturns the long-standing foundational ethical norm of genetic testing and counseling-neutrality in the provision of information’ (p. 3). Caplan, an ethicist, laments that these laws would require that positive information about Down syndrome be shared with parents. It seems, however, that supposedly neutral approaches describe diagnoses like Down syndrome as markedly negative. A study on parental experiences after prenatal diagnosis stated, ‘It is undoubtedly a time of great crisis that may be further compounded when there is uncertainty about the prognosis’ (Hodgson & McClaren, 2018, p. 151). There is an assumption that disability is the inverse of health and therefore a predominantly negative outcome. A growing number of public policies in the United States have attempted to regulate the termination of pregnancies based on prenatal tests, but their motives are not always what they seem. NIPT itself is not regulated by the Food and Drug Administration, in part because manufacturers lobby for less regulation (Denbow, 2020). In 2013, a year before NIPT was available in the United States, North Dakota banned abortions based on genetic anomaly. Multiple states (19 at the time of this publication) have followed in implementing prenatal nondiscrimination acts (PRENDAs), which criminalize abortion after a genetic disability diagnosis, or information acts, which specify what kind of information must be provided to parents while learning of a prenatal diagnosis (Knight & Miller, 2021). None of these policies or the political platforms from which they emerge include increased funding for Medicaid (the medical insurance for poor and disabled people in the United States), special education, or community-based supports for people with disabilities. Knight and Miller (2021) described these policies as ‘pro-life Trojan horses: their proponents take up the rhetoric of disability rights to advance an anti-abortion agenda’ (p. 3).

CONCLUSIONS AND RECOMMENDATIONS With the imminent expansion of NIPT as a first-tier screen and to identify single gene disorders, policy makers have an urgent obligation to consider their role in reducing associated inequities. Consideration of the human rights of people with disabilities and authentic inclusion of a wide range of stakeholders, including disability rights advocates, should lead the drafting of these policies. While NIPT is almost exclusively distributed by private companies, some local governments and healthcare systems have considered ‘in-house testing capacity to customize content and focus their limited healthcare resources’ (Allyse et al., 2015, p. 121). The eugenic potential of such use of NIPT for allocation of healthcare must not be ignored. Right now, NIPT is less likely to be available in low-income countries. Most people in these countries cannot afford NIPT (Allyse et al., 2015). It is not seen as a component of public health but rather as a mechanism of choice for a select few. There are many other ways that countries can improve the implementation around NIPT to honor the rights of disabled people. Further training is needed for genetic counselors, physicians, and frontline community health workers who provide prenatal care. This training should align with regulatory and legal guidelines of each country. Implicit bias against disability has been observed in genetic counselors and should also be the target of training (Gould et al., 2019). Some healthcare professionals hold explicitly eugenic views and this reality cannot be ignored (Shakespeare, 1998). If

610  Research handbook on disability policy a woman and her partner decide to terminate a pregnancy on the basis of prenatal diagnosis, it is important that accurate, up-to-date, and comprehensive information is provided to families upon learning of a diagnosis. This information should be delivered in a nondirective manner with time available to discuss questions and concerns. NIPT holds the potential to augment or undercut equity. Access to NIPT paired with balanced, informative consultation can empower women to plan aspects of parenthood, like timing and outcomes, with more information. The proliferation of NIPT may change the way disability is stigmatized as it may be seen as a failure to ‘screen’ out what society views as defective. Reproductive and disability justice frameworks recognize that the illusion of individual ‘choice’ is inextricably intertwined in the larger societal context, where policies and attitudes are often hostile to the idea of disability and people with disabilities themselves. To achieve justice, communities must prioritize economic justice, human rights, and true inclusion of disability.

NOTES 1. 2. 3. 4.

Start of endnote. In this review, we use the term NIPT to stay consistent with the larger body of literature but recognize that terminology has been updated to include a broader spectrum of cell-free DNA screening (cfDNA screening). End of endnote. Start of endnote. Trans men and nonbinary people can also be pregnant. The term ‘pregnant women’ is used throughout this review to remain consistent with the literature. End of endnote. Start of endnote. Authors have intentionally used both person-first and identity-first language to discuss disability as both approaches to language are valid and preferences vary within and beyond the disability community. End of endnote. Start of endnote. In this review, we try to point out when scholars are investigating NIPT or earlier technology. We find an overlap in attitudes towards the various technologies, but people also recognize that NIPT is more accurate and available earlier in pregnancy. End of endnote.

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51. Care robots as enabling assistive technology: implications for quality of life and disability policy1 Naonori Kodate, Hasheem Mannan, Sarah Donnelly, Yurie Maeda and Diarmuid O’Shea

INTRODUCTION Article 12 (1) of the International Covenant on Economic, Social, and Cultural Rights (1966) stipulates that ‘[t]he States Parties to the present Covenant recognize the right of everyone to the enjoyment of the highest attainable standard of physical and mental health’ (United Nations General Assembly, 1966). The UN’s ‘The Right to the Highest Attainable Standard of Health’ also recognizes States Parties’ core obligation to ‘ensure the right of access to health facilities, goods and services on a non-discriminatory basis, especially for vulnerable or marginalized groups’ (United Nations Committee on Economic, Social and Cultural Rights, 2000). Progress has been made, but more has to be done to achieve the right to health and its imperative of redressing health inequalities (Hammonds et al., 2019). In supporting both the independence and care of people with disabilities and empowering them to live healthy lives, assistive technologies (ATs) in the form of care robots can play an important role. ATs can be defined as ‘an umbrella term for any device or system that allows individuals to perform a task that they would otherwise be unable to carry out or that increases the ease and safety with which the task can be performed’ (Davies et al., 2017, 252). The distinction of daily assistance and its interconnection with care robots highlights the value of independent living, which defines good aging as ‘the ability to perform functions related to daily living’ (World Health Organization (WHO), 2002, 13). Assistive devices maintain or improve an individual’s functioning and independence, thereby promoting their well-being. Hearing aids, wheelchairs, communication aids, spectacles, prostheses, pill organizers, and memory aids are all examples of assistive products (WHO, 2018). This chapter focuses on how ATs can help improve the well-being of older people in particular, by placing an emphasis on the human rights implications of these technologies. This chapter explores perspectives of care professionals, care providers, advocacy groups, AT developers, researchers, and policymakers on the potential role of ATs including care robots to improve the health and well-being of older adults in need of care and support. Care robots hereafter are defined as ‘devices and systems that perform functions such as monitoring of older people and their surroundings, and provision of support for older people and/ or their caregivers (including communication that enables interactive conversation, assistance with activities of daily living or managing medications)’ (Suwa et al., 2020, 2). The World Report on Aging and Health (WHO, 2015a) indicates that ‘(b)y age 60, the major burdens of disability and death arise from age-related losses in hearing, seeing and moving, and non-communicable diseases, including heart disease, stroke, chronic respiratory disor615

616  Research handbook on disability policy ders, cancer and dementia’ (WHO, 2015a, 26). The Global Burden of Disease project (WHO, 2015b) identified the common causes of years of healthy life lost due to disability in people older than 60 years. Using these data, particularly in high-income countries the greatest burden of disability is estimated to come from falls, diabetes, dementia, and osteoarthritis. The higher burden from dementia in high-income settings is likely to, at least partly, reflect the older average age in these countries and greater awareness and diagnosis of these conditions (WHO, 2015a). The WHO estimates that globally, more than 1 billion people need one or more assistive products. With an aging global population and a rise in non-communicable diseases, more than 2 billion people will need at least one assistive product by 2030, with many older people needing two or more. Today, only 1 in 10 people in need have access to assistive products. Some new ATs are potentially valuable for improving the health and care of older people and they include memory and communication aids, safety devices, and care robots. ATs may have a triple-win effect (Kim, Gollamudi and Steinhubl, 2017) because they may: (i) delay entry into residential care; (ii) reduce the burden on caregivers; and (iii) improve the quality of life of older people in receipt of care. Presently, while more targeted approaches are recommended (Health Information and Quality Authority, 2016), it has been reported that the use of restrictive practices, such as physical restraint or medication, can take place in residential care settings (Burns, 2020). The cost of ATs can vary greatly, depending on the type, as they include a simple tool, visual aids, software, and a self-contained device with a sophisticated mechanical and electronic system (e.g. robots). Therefore, the cost–benefit analysis will be necessary when considering an adoption of ATs in an organization as well as in wider society. However, as has been pointed out, a human rights-based approach should be applied in the process of resource allocation decision-making, because the introduction of an expensive AT can have a detrimental impact on access to care for people with disabilities (Aceves, 2018). The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is critically important for developing a robust, rights-focused regulatory framework for the use of ATs. Article 4 of the Convention places the obligation on Member States to undertake research and to develop new technologies, including ATs, ‘suitable for persons with disabilities, giving priority to technologies at an affordable cost’ – Article 4(1)(g) – and to provide information about such technologies – Article 4(1)(h). These provisions recognize that ATs can improve the lives of people with disabilities, including older people in care settings. Importantly, the requirement under Article 5(3) for States Parties to ensure that reasonable accommodation is provided for people with disabilities imposes an obligation on Member States to provide positive support. The provision, availability, and use of ATs to support older people receiving care and support may well fall within the reasonable accommodation requirement. Obligations under Article 9 address accessibility – that is, provisions that ‘enable persons with disabilities to live independently and participate fully in all aspects of life’ and this extends to enabling older people to continue to live independently. Furthermore, Article 25 of the Convention recognizes the health-related rights of people with disabilities and the ‘right to enjoyment of the highest attainable standard of health without discrimination on the basis of disability’ (United Nations, 2006). Within this context, Smith et al. (2019) conducted a keyword analysis of a sample of UNCRPD reports by States Parties and compared reporting across countries at different UN Human Development Index levels in each of the six WHO regions. Most reviewed reports demonstrate evidence of a systematic approach to ATs, without evidence of evaluation or engagement of persons with disabilities in policy development or evaluation. However, none

Care robots as enabling assistive technology  617 specifically discusses the need, supply, and demand of care robots within the context of independent living as well as the potential of care robots as a policy option. Importantly, these issues must be considered by care providers and health policymakers if assistive robots are to be implemented in healthcare in a socially, culturally, and ethically acceptable and appropriate manner. The importance of Ethical, Legal, and Social Aspects research cannot be overstated. In relation to an older person as a decision-maker, Article 12 states that disability does not negate rights or the need to provide appropriate decision-making supports to ensure that those rights can be exercised. With the individual as decision-maker, consent becomes a key factor in the process of deciding whether to use ATs to support an older person (Kodate and Donnelly, 2023). Bennett (2019) argues that the adoption of a human rights-based approach can provide valuable insights to assist in deciding whether the use of ATs will be supportive of older persons from the perspective of empowerment. This is in line with the AAAQ (Availability, Accessibility, Acceptability, and Quality) framework, originally developed by the WHO (WHO, n.d.). Cross-country and cross-cultural differences in acceptability are highlighted by a recently conducted questionnaire study (Suwa et al., 2020). This study, carried out with older people, family carers, and care professionals in Ireland, Japan, and Finland, suggests that the lack of familiarity with robotics, social acceptance, violation of privacy and human dignity, and the absence of user-driven research and development can be challenges for social implementation of ATs. This is more pronounced in the two European countries where respondents placed significant importance on entitlement to human care regardless of the usage of home-care robots while recognizing the potential of robots to increase mental and physical well-being (Kodate et al., 2021). The findings of this study were corroborated by another research team’s comparative study of the two countries (Lolich et al., 2022). When it comes to physical type ATs (e.g. powered exoskeleton, namely an external skeleton that supports and protects all or part of the human body) in a rehabilitative environment, previous work highlights the importance of a sense of agency and ownership (Chambon, Sidarus and Haggard, 2014; Gimlin, 2002; Grüneberg et al., 2018; Butnaru, 2021). This matters not only to the design, development, and use of ATs but also to disability justice, because technical imperatives of recreating ‘what is normal’ (‘normal’ gait and walking, for example) may not reflect ‘what is normal’ for older people or those with disabilities. In the mental health community in Japan, an approach called Tōjisha-kenkyū (translated as self-directed research or user-led research) has been developed and used in research (Shakespeare and Collins, 2016). In this method, developed by a social worker Mukaiyauchi and others in a small town in Hokkaido, people with similar experiences spend time together in shared spaces and share collective knowledge which gives original articulation to experiences (Ito and Mukaiyauchi, 2007; Shakespeare and Collins, 2016; Kumagaya, 2015). The potential of applying Tōjisha-kenkyū to the co-design of robots for people with autism has been discussed (Kumagaya, 2015). Similar concepts of the participatory approach (e.g. public and patient involvement) have been adopted internationally (Obayashi, Kodate and Masuyama, 2021). In Europe, the Responsible Research and Innovation (RRI) framework has been proposed and used (Stahl and Coeckelbergh, 2016; Aschenbrenner et al., 2020). The RRI seeks to incorporate ethics and social concerns in the design and development of ATs. Yet the use of RRI or Tōjisha-kenkyū remain a rare occurrence. The key question for this chapter therefore is: how can we ensure that care robots are designed and used to empower people with disabilities? Sub-questions include: will care

618  Research handbook on disability policy robots support the mobility, companionship, and social engagement of older people; what are the ethical questions to be considered; what obstacles and facilitators are there for successful implementation; and can we reimagine person-centred care, with ATs playing a greater role in realizing better care pathways for people with disabilities? A systems approach (Kodate et al., 2022) was our guide to these questions in order to explore experts’ perceptions of how ATs can improve care processes, structure, and policy outcomes for patients. This chapter first provides a brief outline regarding the national context of Ireland, in relation to its health and social care provision and the use of ATs. It then reports the analysis of qualitative data, deriving from 15 interviews with researchers and developers in ATs, care professionals, care providers, advocacy groups, and policymakers in Ireland. This interview study was part of a larger project, which aims to create a roadmap for the coexistence of care robots and humans. The international and interdisciplinary research team, primarily based in Ireland and Japan, examined cultural and policy differences among four jurisdictions in East Asia and Western Europe around the current use of ATs, with a particular focus on care robots. However, the interview topic guide covered a broader area of ATs than care robots, considering that the use of care robots remains still very rare in many countries including Ireland.

IRELAND: NATIONAL CONTEXT People worldwide are living longer than ever, and this is also true in Ireland where life expectancy has risen by several decades in the last 100 years. Life expectancy at birth in Ireland is 80.8 years for men and 84.7 for women (Eurostat, 2019). The number of people with dementia in Ireland is estimated to be 55,266 and is expected to grow at an average rate of 3.6 per cent per year over the next 30 years (O’Shea, Cahill and Pierce, 2017). Just as in many other advanced economies, institutional care has long been the norm as the model of long-term care policy and system in Ireland. The Home Care Package Scheme was introduced in 2006, followed by the Nursing Home Support Scheme in 2009. The National Positive Aging Strategy (2013) highlighted vulnerability, including the risk of poor health or loss of independence, financial vulnerability, and social isolation. In 2014, the National Dementia Strategy was published, and the National Dementia Office was established in the following year. From 2017 onwards, Memory Technology Resource Rooms were set up across the country, and the facilities allow people living with memory deficits and their carers to have a hands-on experience of AT equipment and seek advice from care professionals (National Dementia Office, n.d.). In terms of a broader care system, Sláintecare details a ten-year plan for health reform in Ireland with the aim of establishing a universal, single-tier health service where patients are treated solely on the basis of health needs (Government of Ireland, 2018). It will also reorientate the health system towards integrated primary and community care, consistent with the highest quality of patient safety in as short a time frame as possible (Burke et al., 2018). Sláintecare has five interrelated components: population health; entitlements and access to healthcare; integrated care; funding; and implementation. Progress to date, however, has been slow, with early milestones missed and altered (Burke et al., 2018). The COVID-19 pandemic disrupted and further delayed this implementation process. In terms of the use of ATs including care robots, there has been a Europe-wide movement towards user-centred design in the last three decades. In 1993, the European standardization

Care robots as enabling assistive technology  619 organization CEN (Comité Européen de Normalisation) produced standards for ATs. In parallel, there was also a development of a trans-European telecommunications network. In 2005, the EASTIN (European Assistive Technology Information Network) was founded in the European Union. To ensure accessibility, and promote social inclusion, the concept of ‘universal design’ and ‘design for all’ has been used across Europe. The latest Communication from the European Commission, ‘Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030’, reiterates the issue of accessibility, stating that ‘persons with disabilities have poor access to inclusive basic services, protection, assistive technologies, information, justice and legal identity’ (European Commission, 2021, 20). However, in the Irish context, Share and Pender (2018) state that despite developments in care robots research, the training and education, regulatory, and policy fields lag behind. In Ireland, the development of AT infrastructure is a relatively recent phenomenon (National Disability Authority, 2012). To catch up with other European countries, many advocacy groups including the National Disability Authority (NDA), Enable Ireland, Disability Federation of Ireland (DFI), and ALONE have been very active over the last decade. The NDA was founded in 2007 under the 2005 Disability Act with the goal of achieving universal access. Under the Act, people with disabilities are entitled to (i) have their health and educational needs assessed; (ii) have individual service statements drawn up, setting out what services they should get; (iii) access independent complaints and appeals procedures; and (iv) access public buildings and public service employment. Subsequently, the NDA spearheaded several projects promoting the use of ATs. In recent years, non-governmental, charitable bodies advocating older people’s rights such as ALONE have been promoting the use of ATs, particularly in housing (ALONE, 2019). As previously mentioned, a questionnaire study was carried out in Ireland, Finland, and Japan, asking questions about end-users’ attitudes to and perceptions of home-care robots. In Ireland, 178 older people, family carers, and health and social care professionals participated. People with care responsibilities in their private capacity expressed more interest in, and readiness to use, home-care robots, while emphasizing the importance of ‘privacy protection’ and ‘guaranteed access to human care’ (Kodate et al., 2021). Thus, increasing attention is being paid to the role of ATs in supporting healthy aging and the lives of people with disabilities, including people living with dementia, and the ethical issues relating to consent and human rights in this context (Altendorf and Schreiber, 2015; Guisado-Fernández et al., 2019; Prendergast, Kodate and Balteanu, 2021). Whether these growing expectations for development and social implementation of ATs can be turned into a reality, the physical, social, cultural, and institutional context are all important. This was one major focus of our interview study.

RESEARCH METHODS AND PARTICIPANTS This chapter reports solely on the Irish aspect of the study. Ireland is a small European nation with a population of approximately 5 million (as of September 2021), but with no universal access to health (Burke et al., 2018). As the country is currently seeking to reform its care system to achieve universal access, utilizing the benefits of technology and digital innovations, this case study offers many insights to readers across countries.

620  Research handbook on disability policy The interview topic guide included: personal profiles (occupation, role and responsibilities, their relationship with ATs, and their familiarity with robots); their perceptions regarding the use of ATs in social care and the country’s social care system; their views on facilitators/ barriers to social implementation of ATs; and future vision for independent living in old age (supported by ATs). Furthermore, the interviewees were asked how the use of ATs has been influenced by COVID-19. The interviews were conducted between September and December 2020. Fifteen interviewees consisted of 10 females and five males, and are categorized into six types: one AT developer (DV1), four researchers (RS1–RS4), three policymakers (PM1–PM3), three advocacy group representatives (AD1–AD3), two care providers (PR1–PR2), and two care professionals (CA1–CA2). All participants are either working in care sectors or familiar with AT research and policy. Only one participant covers two roles, as CA2 was seconded to a government body at the time of the interview. The remainder of the chapter presents the findings.

FINDINGS – STAKEHOLDERS’ PERCEPTIONS Current Use and Usefulness of ATs In terms of the current use of technology, participants discussed the use of devices including robots within the context of therapeutic use and for companionship. Participants discussed the use of ATs and highlighted their specific usage and areas for concern including finances, human resources, and balance between robotic care and person-centred care. Therapeutic usage focused on maintaining and improving functioning in an integrated setting. For example, participants shared experiences of therapeutic use by stating: We have one placed in a gym that is run as a gym piece of equipment that people with spinal cord injury access. They wanted to be able to exercise alongside other people and part of that was to be upright and walking and was a huge part of their rehabilitation and have lots of help. (RS1)

The same respondent emphasizes the role of ATs in empowering older people by encouraging them to participate in society. Often therapeutic usage was focused on an individual and involved support from a healthcare professional or family members. RS1 indicated that a healthcare professional uses the device with the individual, particularly where there are a lot of secondary complications around some elasticity and joint problems. Amongst health and social care professionals, there is support for the use of ATs. In addition, the usefulness of ATs and robotics in caring for older adults includes the reduction of stress levels for carers, constant collection of biomedical data of older persons, reminders for older people with mild to moderate level of cognitive impairment, and an improvement in the quality of life of older persons. One major practical benefit is the availability of data for diagnosis and treatment, which allows older people to stay in their communities, and private homes as long as they like. ATs can support that system if connectivity is ensured and ethical concerns around data use are overcome.

Care robots as enabling assistive technology  621 It can be so readily transposed into dashboard graphs if you know what occupancy is, length of stay, all of the key metrics. (PR1)

The use of a robotic device for companionship was focused on usage of a specific robot named Mylo (Figure 51.1). Mylo is a cat-faced Irish robot who helps care for people with Alzheimer’s disease or dementia. Mylo can understand voice commands to make phone calls. Participants emphasized the ease in operating Mylo. In terms of companionship, participants referred to family members being able to maintain their daily routines, relationships, friendships, and social supports and yet be able to stay connected with their parents without regular physical visits. One concern regarding the use of robotic devices is the knowledge of how they are operated and the controls the users have over them. The following statement reflects those concerns: Who is controlling that and what sensors is it using, but when you talk to other people and you mention that robot or they may have already have heard of it, it scares them. (DV1)

However, one respondent highlighted the repetitive nature of robots’ function and performance as a positive element. One of the ladies there said ‘well, I’d much rather be cared for by a robot than a human. Given the propensity of humans to abuse.’ (AD1)

Figure 51.1

Two care robots mentioned in the interviews (left: Mylo, right: PARO. Images by Kodate)

Another robot that has been used in Ireland is PARO (a baby harp seal robot, Figure 51.1). PARO was designed and developed by the National Institute of Advanced Industrial Science and Technology, Japan, as a pet therapy for older people with dementia. The uptake of PARO was discussed within the context of the cost and facilitating of learning to use this robot. If you’re talking about PARO you know there are lots of issues there, cost being one, you know and also even just training and the group that you’re dealing with, older people as well. (RS4)

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LONG-TERM CARE SYSTEM Using an ecological systems approach, participants were asked their views regarding the Irish long-term care system, the demographic challenges awaiting the system, nature, and scope of the services, and challenges related to human resources and innovation. Sense of guilt and denial of appropriate social care as a result of it was expressed while discussing feelings on using long-term care. There seems to be a lot of guilt when people put their parent into a nursing home like they’re not supposed to go there, they’re supposed to stay at home. And there’s a lot of denial, so people stay out of nursing care a lot longer than they should, there’s a lot of pressure put onto families. (DV1)

Another participant addressed the lack of gerontological literacy playing a role in developing the nature and scope of the long-term care system. The casual use of words like convalescence, step-down, intermediate care, all of which are code for under-resourced, what it should be rehabilitation but is actually under-resourced. That’s probably the key challenge. (CA1)

Another challenge highlighted was the lack of human resources and in particular knowledge on dementia. About two thirds of residents have dementia and staff need to be [but] are not dementia trained. And they need to be dementia trained. (RS4)

Participants discussed the need for integration of care. (We need to) design a system that allows the acute sector or hospitals to link in with our community sector much more effectively. (AD2)

FACILITATORS AND BARRIERS TO SOCIAL IMPLEMENTATION The results are shown in Table 51.1 and Table 51.2.

ETHICAL ISSUES Related to the barriers and concerns, participants raised a number of considerations and concerns relating to the ethical use of AI and robotics including issues pertaining to the protection of personal information and data and consent, maintaining human contact, and empowering and maximizing independence. Participants highlighted that while there is generally more openness to the use of AI and robotics, concerns have been raised about the storage and use of personal information gathered. Who is going to take the responsibility of the data? That’s the question. Who owns the data? And what are you going to do when there’s an abnormality in that data? (PR2)

Care system

Infrastructure

Professionals’ resistance

Usability

●Fear of unknown ●Something ‘extra’ ●Media representation ●Lack of awareness (types, benefits, etc.) ●Gaps between developers and end-users (including There was a problem in the consultation and development phase where it wasn’t inclusive enough care professionals) in the design process of the end-users of this technology to really ask them ●Proof of efficacy what it is they wanted. (RS1) There was a lot of fear about it, a lot of reluctance in some quarters, but actually it’s working very well for a lot of people with dementia. (PM2) I end up having to hotspot off my phone because the internet to do video calls, for instance and that’s a big issue and it’s the thing where you end up losing people because they just get frustrated. (CA2) Because you take those types of supports away and the care systems collapse you know, or you’re left with people who are not getting meals at home. (RS2)

Perceptions among people and in society

Illustrative quotes ...the fact that the government hasn’t funded those ... has been a barrier to people actually adopting those. (PM1) There seems to be a lack of real-world practicality in what people’s problems actually are and are you solving that and is it a commercially viable solution. (DV1) A lot of people aren’t probably aware of the types of technologies that exist that could help them. (RS3)

Key themes ● ●Cost for individual or organizational users ●Government’s risk-averse attitudes (e.g. slow decision-making process, fear of legal issues) ●Feasibility of commercialization ●Absence of systems thinking

Barriers to wider implementation of ATs

Broader topics Economy, market, and public policy

Table 51.1

Care robots as enabling assistive technology  623

Evidence-based, participatory approach

Professionals’ engagement and buy-ins

Improved usability and design process

Communications and public engagement

Perceptions among people and in society

Illustrative quotes Legitimacy and budget lines go together you know that way... (AD3) Better awareness of the types of technologies I think across lots of different stakeholder groups that would be beneficial. (RS3) There’s a private market solution so if you think about it everything from alarm buttons to GPS trackers to ... there is an acceptance that technology has a role. (CA1) ●Change of mindset ...You could see it truly becoming rehabilitative I think as ●Change of conceptual framework opposed to substitutive you know you can’t do this movement so ●De-mystification of ATs this device will do it. (RS1) ● Awareness (types of ATs) Because the assistive tech is so practical for people and really ●Positive experience (companionship) helps them with the management of … symptoms, you know in ●Open discussion of risks, costs, and benefits a landscape where there’s little in the way of offering for people with dementia often it’s seen as really welcome and beneficial. (PM2) ● They need to be used regularly with sufficient intensity if they ●Participatory approach (users’ needs and are to drive any meaningful change in a person’s status. And so inputs into the design, e.g. appearance, they need to be developed whereby a carer or multiple carers can functionalities) easily use the devices with minimal training. (DV1) ●Interdisciplinary learning embedded in a cur- We’re undergoing a curriculum review at present and it is really looking at the competencies that have been defined externally to riculum (undergraduate level) ●Recognition of competence in a professional see if we match these in our curriculum. So that’s one, that’s … one of the drivers of a curriculum review... (RS1) society ●Nurturing a specialist (rehabilitation technologist) ●Training/courses (e.g. Digital Academy) Living Lab is the way to go that we are able to sort of test, innovate and then if something is successful in the Living Lab that the government buy into that and provide us the funding to be able to roll it out. (PM2) Because the greatest enabler it has is to link community, family, support services and the medical together ... the joy of it is that that’s the liberation technology can have. (AD3)

Key themes ● funding supports, policy) ●Funding models well aligned with care and needs ●Private care providers responding to needs ●Joined-up thinking (e.g. systems thinking)

Facilitators to overcome these barriers to social implementation

Broader topics Economy, market, and public policy

Table 51.2

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Care robots as enabling assistive technology  625 Some of these were in relation to service providers, for example, the Health Service Executive (HSE), and related to concerns about EU General Data Protection Regulation (GDPR) issues. Some participants reflected that data protection and data sharing concerns often led to risk-aversion in relation to embracing new technologies and stymied innovation. Despite these obstacles, it was noted that there were unique opportunities for Ireland to be a leader in the field. I think that Ireland has the potential to actually excel past places like England and so just even things like the electronic health record with GDPR and stuff like that we are going to have to have joint electronic health records with staff and with the end-users. (AD3)

Unsurprisingly, participants also expressed concerns about gaining informed consent to use AI and robotics, particularly in situations of fluctuating/changing cognition and capacity. It’s one of those things we always consider is consent, you know informed consent and particularly if we’re engaging people over a long period of time you know, through different stages of projects… (RS3)

Beyond data protection and security issues, participants expressed their misgivings about the prospect of assistive technology and robotics replacing human care and contact, as previously mentioned. So I think the key thing is they should always be seen as supplementary to and not a replacement of gerontologically attuned care, and the real worry is in a world that does not value the specialist care provided by specialist gerontology nurses, the danger is … that it will be promoted as substitute gerontology. (CA1)

The same respondent expressed concerns about the quality of clinical care which would be provided in a telehealth capacity, in particular for people with dementia. Some participants contextualized their concerns within the current workforce challenges in gerontological care in Ireland. But there would always have to be a balance that the technology would be never seen as something that would replace human contact. (PR2)

One policymaker, however, disagreed, asserting that it is not a zero-sum game while recognizing weaknesses in Ireland’s current healthcare infrastructure. It would be cheaper, the HSE paying for Mylo is cheaper than providing a home help person. And then you would also have the carers freed up to be able to go to the people who need a higher level of care and input. So it’s not replacing people and not replacing that care its freeing up that care to work where there’s an absolute need for it. (PM3)

Other participants, while acknowledging the potential benefits in terms of the use of robotics acting as an enabler to caregivers taking on less practical tasks, however, cautioned that this could lead to some carer roles becoming obsolete.

626  Research handbook on disability policy I worry that ... what’ll happen is that their time won’t be given over then to having a nice cup of tea and having a chat with the person, but actually, they just will be moved, their job will disappear, and that’s what worries me the most, as it does with many people here. (RS2)

Participants are often conflicted between the clear benefits of AI and robotics as a tool to empower individuals, maximizing their functional ability and quality of life, and the ethical challenges related to their use.

FUTURE VISION AND BUILDING AN INTEGRATED CARE SYSTEM Participants reflected on their future vision for AI and robotics in Irish society, and what they imagined this might look like. Key themes included health and social care policy as a driver, meeting the future needs of social care workforce demands in the context of population aging and aging in place. Some participants viewed healthcare policy such as Sláintecare acting as a driver to the embedding of AI and robotics into the health and social care landscape in Ireland. In May 2021, the government published the Sláintecare Implementation Strategy and Action Plan 2021–2023, which emphasizes the role of technology and digital innovations in order to integrate care pathways. If successfully implemented, safe and timely access to care will be enabled for people with disabilities. The reform agenda around Sláintecare as well should be an enabler to support people to stay in their own home as long you know, as long as is practical, as long as they would like to … There should be a spectrum of options or … a range of options for people when it comes to care. (PM2)

The importance of investment was also emphasized. Several participants linked the use of robotics and technological advances as a possible solution to staffing issues in the eldercare sector. You have a demographic challenge where home care is going to have to increase and the available staff or there’s not enough staff available to keep up with the demographics right. So at one level, you need to look at technologies as to how can we just do this more efficiently with the available labour that we have. (AD2)

Many participants reflected on the fact that ATs would better support Irish citizens to age in place. Some believe that in the future, options would be more routinely available. Participants recognized and welcomed the unique opportunity which AI and robotics potentially offer to the future of health and social care provision and aging in place: WHO awarded Ireland the first status of fully age-friendly, first age-friendly country in the world… Everything we do is contributing to us to having a better life expectancy, and a better longevity, but most importantly a better experience as we age. (PM2)

Care robots as enabling assistive technology  627

DISCUSSION AND CONCLUSION A decade ago, robotics in health and social care began to be applied in surgery, rehabilitation therapy, eldercare, and autism. Major challenges for the use of social robotics in care settings include user acceptance, safety, ethics, and employment implications (Sætra, 2020). Recently, Maibaum et al. (2022) in their critique of care robots in healthcare argue that ‘there has been a fundamental conflict between economic, professional, and ethical care concepts and that this care conflict shapes the phenomenon of care robots’ (p. 470). Care robots have become an arena of political interest that is not only publicly debated (European Commission, 2015), but is now heavily researched, with pilot implementation programmes funded (European Commission, 2017). Thus it is essential that implications for disability policy are contextualized. In Tokyo, an avatar robot café called DAWN was opened in June 2021, with robots (OriHime) operated by people with disabilities, including those who are bedridden. The pilot study results show that social participation enabled by care robots increased quality of life and mental fulfilment for people with disabilities (Takeuchi, Yamazaki and Yoshifuji, 2020). There are growing expectations for ATs in social care as a supporting mechanism for aging in place. Our interview study confirms that Ireland is no exception. Care robots can support the mobility, companionship, and social engagement of older people. They can benefit not only older people themselves but also carers by reducing stress and offering family carers a sense of safety (Obayashi, Kodate and Masuyama, 2020). However, the respondents identified several ethical questions such as the use of data and privacy, and the balance between human care and care supported by ATs, particularly for older people with cognitive impairment. It also reaffirmed that the roadmap to realizing aging in place with ATs still has a long way to go. Chronic underfunding, the lack of staffing, and skill shortages, in addition to the challenging work conditions, need to be addressed. Ireland’s long-term care system needs a series of reforms, which should enable a person-centred, AT-aided care system. The more digitalized the care system becomes, the greater the need for a reliable and resilient regulatory system becomes. Safety nets should also be put in place so that digital divides would not create another layer of inequalities. The other ethical concerns such as the protection of personal data, informational self-determination, and dignity will have to be considered (European Parliament, 2018). In addition, the environment and opportunities for testing the effectiveness of these ATs and experiencing positive and negative side-effects of relying on ATs have not been sufficiently provided in the country. The narratives, captured in this interview study, demonstrate the importance of understanding the national, organizational, and individual contexts. As the use of care robots is still limited, this interview study did not include older people themselves, and future research should look at them. However, as highlighted by the recent questionnaire study (Kodate et al., 2021), older people in Ireland show a mixture of positive and negative attitudes to future use of home-care robots. Implementing a universal human rights-based approach would require a framework that is well adapted to such local contexts. Furthermore, in order to understand the real needs of people with disabilities, it is crucial to have a more participatory approach to the design and development of ATs (Curran et al., 2021). Moreover, the RRI framework (Stahl and Coeckelbergh, 2016) should be applied in a living lab or private home settings. Prior to a wider social implementation, evidence from research should also be examined in a broader context (e.g. multiple locations, municipalities). The balance between universal design and person-centred care is critical for people with disa-

628  Research handbook on disability policy bilities, and policy reforms should be based on the concept of Tōjisha-kenkyū and systems thinking (Kodate et al., 2022). There is certainly an international dimension to this case study from Ireland, and it should be examined from a broader global perspective. In the United Kingdom, Prescott and Caleb-Solly (2017) seek a clear roadmap for a connected care system, since independent living is important for providing long-term sustainable solutions for creating a care ecosystem linking home, residential, and hospital care as a continuum, and call for researchers, policymakers, and all social care stakeholders to work together in addressing ethical and societal issues. The study conducted by Ying Tan and Taeihagh (2021) indicates that Singapore’s regulatory sandbox approach can foster experimentation through the creation of robotics pilot projects and the initiation of various robotics pilots in different health clusters. The stakeholders involved in Singapore envision positive scenarios of human–robot coexistence in the long-term care setting. Designing and implementing advanced robotic and autonomous systems within care systems can provide an important opportunity to progressively realize the right to independent living enshrined in the UNCRPD with a significant focus on interconnected policy and practice implications. Thus, it is imperative to bring together policy stakeholders from care settings (disability and rehabilitation), i.e. people with disabilities, older people, health and social care professionals, service providers, as well as care scientists, engineers, and policymakers. As stipulated in the UNCRPD, it is essential for all levels of government and stakeholders to ensure accessible information be provided to people with disabilities about ‘mobility aids, devices and assistive technologies, including new technologies, as well as other forms of assistance, support services and facilities’ (United Nations, 2006, Article 4). Therefore, whilst it remains to be seen whether we can ensure that ATs including care robots are designed and used to empower people with disabilities, if we successfully incorporate the human rights-based approach in the framework of not only R&D but also for the evaluation of policy and practice, ATs have great potential for realizing aging in place for all in the future.

NOTE 1.

Start of endnote. We would like to thank those who have provided support and help, particularly the team members and advisers of the project ‘Harmonisation towards the establishment of Person-centred, Robotics-aided Care System (HarP:RoCS)’. We also would like to thank the Toyota Foundation (Co-Creating New Society with Advanced Technologies – D18-ST-0005) for funding our HarP:RoCS project. End of endnote.

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Care robots as enabling assistive technology  629 International Conference on Artificial Intelligence and Virtual Reality (AIVR), 146–150. doi:10.1109/ AIVR50618.2020.00033 Bennett, B. (2019) Technology, aging and human rights: Challenges for an aging world. International Journal of Law and Psychiatry, 66, 101449. doi:10.1016/j.ijlp.2019.101449. Burke, S., Barry, S., Siersbaek, R., Johnston, B., Ní Fhallúin, M., and Thomas, S. (2018) Sláintecare: A ten-year plan to achieve universal healthcare in Ireland. Health Policy, 122(12), 1278–1282. doi:10.1016/j.healthpol.2018.05.006. Burns, S. (2020) Residential care staff carry-out unauthorised use of physical restraint: Home in Roscommon not compliant with seven out of 13 regulations – HIQA report. Irish Times, 30 January. Butnaru, D. (2021) Exoskeletons, rehabilitation and bodily capacities. Body & Society, 27(3), 28–57. Chambon, V., Sidarus, N., and Haggard, P. (2014) From action intentions to action effects: How does the sense of agency come about? Frontiers in Human Neuroscience, 8, art. 320. https://doi.org/10.3389/ ​ ​ ​ ​ ​ fnhum.2014.00320 ​ ​ Curran, T., Jones, M., Ferguson, S., Reed, M., Lawrence, A., Cull, N., and Stabb, M. (2021) Disabled young people’s hopes and dreams in a rapidly changing society: A co-production peer research study. Disability and Society, 36(4), 561–578. Davies, R., Fukuda, R., Hua, H.-M., Martin, S., Mulvenna, M., and Merkel, S. (2017) Assistive technology for older people. In S. Kwon (Ed.), Gerontechnology: Research, Practice, and Principles in the Field of Technology and Aging (pp. 251‒270). New York: Springer Publishing. European Commission (2015) Autonomous systems. Special Eurobarometer 427. https://data.europa.eu/ ​ ​ ​ ​ data/datasets/s2018_82_4_427_eng?locale=en ​ ​ ​ ​ ​ ​ ​ ​ ​ [accessed 5 May 2022]. European Commission (2017) Europe’s Digital Progress Report 2017. Brussels. https://ec.europa.eu/ ​ ​ ​ ​ digital-single-market/en/news/europes-digital-progress-report-2017 [accessed 5 May 2022]. ​ ​ ​ ​ ​ ​ ​ ​ ​ European Commission (2021) Union of Equality: Strategy for the Rights of Persons with Disabilities 2021–2030. Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions. https://www.un ​ ​ ​ .org/development/desa/disabilities/wp-content/uploads/sites/15/2021/04/European-Strategy-2021 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -2030_EN.pdf [accessed 18 September 2021]. ​ ​ European Parliament (2018) Assistive Technologies for People with Disabilities (Part IV: Legal and Socio-ethical Perspectives). European Parliamentary Research Service. https://www.europarl.europa ​ ​ ​ ​ .eu/RegData/etudes/IDAN/2018/603218/EPRS_IDA(2018)603218(ANN4)_EN.pdf [accessed 5 May ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ 2022]. Eurostat (2019) Life expectancy by age and sex. Data relates to 2019. https://appsso.eurostat.ec.europa ​ ​ ​ ​ ​ .eu/ [accessed 18 May 2021]. Gimlin, D. (2002) Body Work: Beauty and Self-Image in American Culture. University of California Press. Government of Ireland (2018) Sláintecare Implementation Strategy. https://www.gov.ie/en/publication/ ​ ​ ​ ​ ​ ​ 6011cf-slaintecare-implementation-strategy/ [accessed 20 May 2021]. ​ ​ ​ Grüneberg, P., Kadone, H., Kuramoto, N., Ueno, T., Hada, Y., Yamazaki, M., Sankai, Y., and Suzuki, K. (2018) Robot-assisted voluntary initiation reduces control-related difficulties of initiating joint movement: A phenomenal questionnaire study on shaping and compensation of forward gait. PLoS ONE, 13(3), e0194214. https://doi.org/10.1371/journal.pone.0194214 ​ ​ ​ ​ ​ ​ ​ Guisado-Fernández, E., Giunti, G., Mackey, L.M., Blake, C., and Caulfield, B.M. (2019) Factors influencing the adoption of smart health technologies for people with dementia and their informal caregivers: Scoping review and design framework. JMIR Aging, 2(1), e12192. https://doi.org/10.2196/12192 ​ ​ ​ ​ ​ Hammonds, R., Ooms, G., Mulumba, M., and Maleche, A. (2019) UHC2030’s contributions to global health governance that advance the right to health care: A preliminary assessment. Health and Human Rights, 21(2), 235–249. Health Information and Quality Authority (2016) National Standards for Residential Care Settings for Older People in Ireland, 2016. Safer Better Care. Ito, E. and Mukaiyauchi, I. (2007) Ninchi koudou ryoho, Bethel-shiki [Cognitive behavioral therapy, Bethel version]. Igaku-Shoin (Japanese). Kim, K.I., Gollamudi, S.S., and Steinhubl, S. (2017) Digital technology to enable aging in place. Experimental Gerontology, 88, 25–31. doi: 10.1016/j.exger.2016.11.013.

630  Research handbook on disability policy Kodate, N. and Donnelly, S. (2023) Assistive technologies, robotics and gerontological social work practice. In G. Kirwan and A. Lopez Pelaez (Eds.), Routledge Handbook of Digital Social Work (forthcoming). Routledge/Taylor and Francis. Kodate, N., Donnelly, S., Suwa, S., Tsujimura, M., Kitinoja, H., Hallila, J., Toivonen, M., Ide, H., and Yu, W. (2021) Home-care robots: Attitudes and perceptions among older people, carers and care professionals in Ireland: A questionnaire study. Health and Social Care in the Community, 1–11. https:// ​ ​ ​ ​ ​ doi.org/10.1111/hsc.13327 Kodate, N., Obayashi, K., Mannan, H., and Masuyama, S. (2022) Improving care quality in a nursing home in Japan: Organisational culture, robotics-aided care and systems approach. In F. Larkin, F. Vallières, H. Mannan, and N. Kodate (Eds.), Systems Thinking for Global Health (pp. 188–201). Oxford University Press. Kumagaya, S. (2015) Tojisha-Kenkyu of autism spectrum disorders. Advanced Robotics, 29(1), 25–34. https://doi.org/10.1080/01691864.2014.967723 ​ ​ ​ ​ ​ ​ ​ Lolich, L., Pirhonen, J., Turja, T., and Timonen, V. (2022) Technology in the home care of older people: Views from Finland and Ireland. Journal of Cross-Cultural Gerontology. doi:10.1007/ s10823-022-09449-z. Maibaum, A., Bischof, A., Hergesell, J. et al. (2022) A critique of robotics in health care. AI & Society, 37, 467–477. https://doi.org/10.1007/s00146-021-01206-z ​ ​ ​ ​ ​ ​ ​ ​ National Dementia Office (n.d.) Memory Technology Resource Rooms. https://www.understandtogether ​ ​ ​ .ie/get-support/memory-technology-resource-rooms/ [accessed 8 May 2022]. ​ ​ ​ ​ ​ ​ National Disability Authority (2012) Research on the Provision of Assistive Technology in Ireland and other Countries to Support Independence Living across the Life Cycle. Work Research Centre. Obayashi, K., Kodate, N., and Masuyama, S. (2020) Can connected technologies improve sleep quality and safety of older adults and care-givers? An evaluation study of sleep monitors and communicative robots at a residential care home in Japan. Technology in Society, 62. https://doi.org/10.1016/j.techsoc ​ ​ ​ ​ ​​ ​ .2020.101318 ​ Obayashi, K., Kodate, N., and Masuyama, S. (2021) Assessing the impact of an original soft communicative robot in a nursing home in Japan: Will softness or conversations bring more smiles to older people? International Journal of Social Robotics. https://doi.org/10.1007/s12369-021-00815-4 ​ ​ ​ ​ ​ ​ ​ ​ O’Shea, E., Cahill, S., and Pierce, M. (2017) Developing and Implementing Dementia Policy in Ireland. https://www.atlanticphilanthropies.org/research-reports/developing-and-implementing-dementia ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -policy-in-ireland [accessed 8 May 2022]. ​ ​ Prendergast, D., Kodate, N., and Balteanu, D. (2021) Circuits of Care: Aging and Japan’s Robot Revolution. Documentary Film. https://filmfreeway.com/CircuitsofCare#:~:text=By%202036%2C ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ %20one%20in%20three,of%20Japanese%20economy%20and%20society ​ ​ ​ ​ ​ ​ ​ Prescott, T.J. and Caleb-Solly, P. (2017) Robotics in social care: A connected care ecosystem for independent living. Report. EPSRC UK Robotics and Autonomous Systems Network White Papers. EPSRC UK Robotics and Autonomous Systems Network, London, UK. Shakespeare, T. and Collins, R. (2016) Mental health self-knowledge: Crossing borders with recovery colleges and tojisha kenkyu. In J. Gubrium, T. Andreassen, and P. Solvang (Eds.), Reimagining the Human Service Relationship (pp. 243–262). Columbia University Press. https://doi.org/10.7312/ ​ ​ ​ ​ ​ gubr17152-013 ​ Share, P. and Pender, J. (2018) Preparing for a robot future? Social professions, social robotics and the challenges ahead. Irish Journal of Applied Social Studies, 18(1), art. 4. doi:10.21427/D7472M. Smith, E., Borg, J., Mannan, H., and MacLachlan, M. (2019) Assistive technology content in UNCRPD reports by States Parties. In Global Perspectives on Assistive Technology: Proceedings of the GReAT Consultation 2019, World Health Organization, Geneva, Switzerland, 22–23 August. Stahl, B. and Coeckelbergh, M. (2016) Ethics of healthcare robotics: Towards responsible research and innovation. Robotics and Autonomous Systems, 86(12), 152–161. Suwa, S., Tsujimura, M., Kodate, N., Donnelly, S., Kitinoja, H., Hallila, J., Toivonen, M., Ide, H., Bergman-Kärpijoki, C., Takahashi, E., Ishimaru, M., Shimamura, A., and Yu, W. (2020) Exploring perceptions toward home-care robots for older people in Finland, Ireland, and Japan: A comparative questionnaire study. Archives of Gerontology and Geriatrics, 91, 104178. doi: 10.1016/j. archger.2020.104178.

Care robots as enabling assistive technology  631 Sætra, H.S. (2020) The foundations of a policy for the use of social robots in care. Technology in Society, 63, 101383. doi: 10.1016/j.techsoc.2020.101383. Takeuchi, K., Yamazaki, Y., and Yoshifuji, K. (2020) Avatar work: Telework for disabled people unable to go outside by using avatar robots ‘OriHime-D’ and its verification. In ACM/IEEE International Conference on Human–Robot Interaction, March. https://doi.org/10.48550/arXiv.2003.12569 ​ ​ ​ ​ ​ ​ ​ United Nations (2006) The Convention on the Rights of Persons with Disabilities. https://www.un.org/ ​ ​ ​ ​ development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html [accessed 5 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ May 2021]. United Nations Committee on Economic, Social and Cultural Rights (2000) General Comment No. 14: The Right to the Highest Attainable Standard of Health. E/C.12/2000/4. United Nations. http://www .refworld.org/ ​ ​ docid/4538838d0.html. United Nations General Assembly (1966) International Covenant on Economic, Social and Cultural Rights. G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 49, U.N. Doc.A/6316 (1966), 993 U.N.T.S. 3, entered into force, 1976. http://www1.umn.edu/humanrts/instree/b2esc.htm ​ ​ ​ ​ ​ ​ ​ WHO (2002) Active Aging: A Policy Framework. World Health Organization. WHO (2015a) World Report on Aging and Health. World Health Organization. WHO (2015b) Deaths by Cause, Age, Sex, by Country and by Region, 2000–2016. World Health Organization. https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates [accessed 18 May 2021]. ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ WHO (2018) Assistive Technology: Key Facts. https://www.who.int/news-room/fact-sheets/detail/ ​ ​ ​ ​ ​ ​ ​ ​ ​ assistive-technology [accessed 24 May 2021]. ​ WHO (n.d.) Availability, Accessibility, Acceptability and Quality. https://www.who.int/gender-equity ​ ​ ​ ​ ​ ​ -rights/knowledge/AAAQ.pdf [accessed 12 September 2021]. ​ ​ ​ Ying Tan, S. and Taeihagh, A. (2021) Governing the adoption of robotics and autonomous systems in long-term care in Singapore. Policy and Society, 40(2), 211–231. https://doi.org/10.1080/14494035 ​ ​ ​ ​ ​ ​ .2020.1782627 ​

52. Narrative 15: Disability rights and robotics: being there without being there Sophie Savage and Tillie Curran

We are Sophie and Tillie, and we worked together on the Disability Rights and Robotics project, at the University of the West of England, as co-researchers in a diverse group including disabled people, carers, students, and academics from social sciences and robotics (Disability Rights and Robotics, 2020). Some members of our team both had lived experience of disability and were involved in teaching, learning, and research. Sophie is one such member. The project has included hours of video conversations, so we based this chapter on an auto-transcribed online conversation, in a similar spirit to Manns and Manns’ (2018) text message conversation. From this point I, Sophie, will refer to myself as ‘me’ and offer a narrative on how my understanding of rights links to a transformative perspective on education. Sayers (2018) insists that disabled children should be considered as having ‘rights’ to education, not ‘needs’ and for me rights to education go far beyond attending school. Tillie:

You’ve said before that this is your dream project. Why is it exciting for you?

Me:

It allows me to be in a space where disabled people imagine a future that I was fantasising about as a child. A future that I never thought I was able to be a part of, and here I am. It makes me think of Wong’s beginning of her new book addressing her younger self and other disabled children: ‘to those who can’t imagine their futures, the world is ours’ (Wong, 2020: p. v). And in this project, this is how I feel. Throughout my childhood I had this vital relationship with education, asking big questions (Savage, 2018) and now, as a grown-up, I am in research spaces, having conversations about rights and robotics design, where we’re imagining exciting futures. It feels empowering as I was a disabled child who was a ‘subject’ in research. My voice, my choice, my decisions were not prioritised, my physical body was medicalised and split into these component parts that did not work which was the focus of my existence and why people found me intriguing (Savage, 2018). Now as a researcher, I am asking questions and I contribute my experience, not because someone wants to capture and utilise me as a ‘fascinating subject’, but because I can be in spaces generating knowledge. The ‘space’ we were working in was transformative and knowledge was co-produced. In this practice as Gillberg (2020) offers, disabled academics such as myself are perhaps uniquely positioned. In such transformative spaces, working with innovative robots and a group of co-researchers bringing their diverse lived experience, can start thinking and imagining choices regarding living life to the full. Many disabled children don’t get the opportunity to go through education in a way that’s accessible for them or don’t get the opportunity to become grown-ups. So, I am hugely privileged to be in this space and be acknowledged as an expert by experience and as a social scientist, especially as there are seemingly so few disabled academics. As Brown and Leigh (2020) explain because academia is traditionally ableist, so few are adequately supported in ways of working or in acknowledgement of the complexity, and additional labour, in the lives of disabled people.

632

Narrative 15: Disability rights and robotics  633 Tillie:

Can you then tell us about rights and robotics now that you’re working with robots?

Me:

I’m working with robots! How cool is that? I love science fiction and how it allows us a space to think about the future imaginatively and playfully. As a child science fiction was my escape when I didn’t want to be where I was, or I was excluded from being where I wanted to be, I escaped into this expansive world of possibilities. When we were in the knowledge café together thinking about our possible relationships with robots, the idea of them being a non-judgmental companion was important. Thinking about these early relationships with robots and how that could empower independence is exciting. On the day of the knowledge café, I operated Double a telepresence robot, which you can use to drive around and interact with people. As someone who has an impaired immune system, physical spaces are inaccessible to me at times, but now I can envision fleets of Double robots in all public spaces. To be supported to access a physical space is essential, but I believe having the option to log in to a Double and be in that space has great potential. It makes me reflect on my experiences of accessing education and how young people’s experience could be transformed. Robots, particularly telepresence robots, can become a way of enabling creativity in specific spaces because without ‘being’ in a room, it’s difficult to develop and contribute to conversations and understanding. My experience of being sent homework or catching up is a poor substitute for physically driving into a space and being there. As there was little in the way of meaningful connection to the classroom, my peers, or my teachers not only was I missing out on my education, but they were also missing out on me being in the classroom.

Tillie:

That’s very powerful! Isn’t science fiction sometimes about terrifying images of the future? Do you think any concerns have come out of the project?

Me:

Yeah, of course, in our knowledge café a variety of concerns were shared. They are about robots being used to replace reasonable adjustments or appropriate physical construction of spaces. Some innovations could be seen as a cost-saving exercise, which is not about rights. It becomes something more sinister. There is a lot to consider around who controls these robots, who pays for them? Are these robots yours? How do they store our data? Who sees my data? Can anyone hack in? Potentially these products could be made to exploit disabled people and they might not deliver on promises made because although robots might be able to learn not every robot will be tailored to everyone. It is also important to consider how technology and disability have always been closely entwined. I’m thinking about assemblage here and how Shildrick talks about bodies being hybrid with an amalgamation of organic and machine parts (Shildrick and Steinberg, 2015). Just as Haraway (1991) argues that we are all ‘already cyborgs’, Weise (2020) echoes this in her narrative regarding a ‘fellow cyborg’ when relating to the musings of an AI. For many disabled people this separation between self and technology is less boundaried. When considering identity and technology as a creative assemblage, others having power over that technology can be concerning. Disabled people have been integral to the progress of design in many realms of life, through lobbying and increasingly participating in the process of design in a move towards design for all (Williamson, 2020). If you’re not having diverse groups of disabled people who have different experiences who traverse the world in different ways and face various forms of barriers and oppression, if those people are not in the spaces driving design with robotics engineers, from the very beginning, then there’s really no point to further innovation. You’re creating things that are in some ways potentially worthless.

634  Research handbook on disability policy Tillie:

So, in a nutshell, Sophie, what is it you want us to understand?

Me:

Without genuine and authentic inclusion of diverse narratives around almost anything, you’re not capturing enough. As a research community, we are responsible for addressing traditional problematic power relations that exist in research (Gillberg, 2020). Without disabled people designing, doing, and writing research, how can we understand and address current and future barriers in our societies? I argue that we can’t.

Tillie:

Now thinking about the implications of the project and what might happen with it, I just wonder how it’s left you feeling at the end of this phase of the project.

Me:

Being a part of a diverse co-research team has left me feeling proud and with a sense of belonging which is so rare. Smith (2020) talks about this move beyond tolerance to ‘actively owning’ a space and truly that’s how it’s been, which brings deep validation.

Tillie:

I think you have a very particular relationship with education, so it’s not just your entitlement to school, but your right to education as a form of liberation.

Me:

Very much so. I think I always saw it as my way out, and not only my right to learn but being a part of that was necessary. However hard it might be. Having a right to education is not the same as being placed somewhere where you’re bullied by the staff and students. It’s not an acknowledgement of your needs or of your experience. I think what I have been trying to say is countering that, education can be a catalyst for liberation. Wong said ‘the future is ours’ and as I can be here, I intend to make more spaces for others to find ways of being here too – through innovation in robotics and technology. To drive into spaces together, to co-produce research, and co-design technology with disabled people leading the way.

REFERENCES Brown, N. and Leigh, J. (Eds.) (2020) Ableism in Academia: Theorising Experiences of Disabilities and Chronic Illnesses in Higher Education [online]. London: UCL Press [accessed 13 May 2021]. Disability Rights and Robotics (2020) Disability Rights and Robotics: Co-Producing Futures. Available from: https://www.disabilityrightsandrobotics.co.uk/home [accessed 21 May 2021]. ​ ​ ​ ​ ​ ​ ​ Gillberg, C. (2020) The significance of crashing past gatekeepers of knowledge: Towards full participation of disabled scholars in ableist academic structures. In: Brown, N. and Leigh, J. (Eds.), Ableism in Academia: Theorising Experiences of Disabilities and Chronic Illnesses in Higher Education [online]. London: UCL Press, pp. 11–30 [accessed 13 May 2021]. Haraway, D.J. (1991) Simians, Cyborgs and Women: The Reinvention of Nature [online]. New York: Routledge [accessed 30 May 2021]. Manns, B. and Manns, S. (2018) The texting project. In: Runswick-Cole, K., Curran, T. and Liddiard, K. (Eds.), The Palgrave Handbook of Disabled Children’s Childhood Studies. London: Palgrave Macmillan, pp. 5–16. Savage, S. (2018). The heaviest burdens and life’s most intense fulfilment: A retrospective and re-understanding of my experiences with childhood liver disease and transplantation. In Runswick-Cole, K., Curran, T. and Liddiard, K. (Eds.), The Palgrave Handbook of Disabled Children’s Childhood Studies. London: Palgrave Macmillan, pp. 41–56.

Narrative 15: Disability rights and robotics  635 Sayers, D. (2018). Rights not needs: Changing the legal model for special educational needs (SEN). In: Runswick-Cole, K., Curran, T. and Liddiard, K. (Eds.), The Palgrave Handbook of Disabled Children’s Childhood Studies. London: Palgrave, pp. 617‒642. Shildrick, M. and Steinberg, D.L. (2015) Estranged bodies: Shifting paradigms and the biomedical imaginary. Body & Society [online], 21(3), pp. 3–19 [accessed 13 May 2021]. Smith, S.E. (2020) The beauty of spaces created by and for disabled people. In: Wong, A. (Ed.), Disability Visibility: First Person Stories from the Twenty-First Century. New York: Vintage Books, pp. 271–275. Weise, J. (2020) Common cyborg. In: Wong, A. (Ed.), Disability Visibility: First Person Stories from the Twenty-First Century. New York: Vintage Books, pp. 63–74. Williamson, B. (2020) Accessible America: A History of Disability and Design. New York: New York University Press. Wong. A. (Ed.) (2020) Disability Visibility: First Person Stories from the Twenty-First Century. New York: Vintage Books.

53. ‘It’s about quality of life rather than length of life’: using and refusing policy discourse in the lives of children labelled with life-limiting and/ or life-threatening conditions1 Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard and Sally Whitney

INTRODUCTION As disability researchers writing from England, we have a complicated relationship with disability policy. At times, we must confess, we find it dense and unappealing and are tempted to turn away from policy-focused research to engage directly with disabled children and young people in the hope of understanding their lives and celebrating their contributions. But we know that these two things – policy and life – are always in relationship to one another and this is particularly the case for disabled children and young people whose everyday experiences in health, education and social care are pushed, pulled and buffeted by policy discourses and practice across the global North. And so, we are inevitably drawn to matters of policy, because, quite simply, policy matters. At the same time, we are mindful of the need to resist the temptation to construct policies as somehow immutable ‘things’, rather than as ‘processes and outcomes’ (Ball, 1993: 11). We know that policy documents are complicated texts which often have multiple authors and multiple audiences, while – at the same time – some policies are not widely read at all (Ball, 1993). Actions are sometimes influenced by policy, but, at the same time, actions are not determined by policy alone and the gaps between stated policy and practice can be wide (Ball, 1993). In addition, we recognise the constitutive quality of policy discourse: social policy discourses constitute the very people that they seek to address (Goodley and Runswick-Cole, 2011). Policies powerfully categorise and construct the very objects and subjects of their discursive repertoires. It is not that disabled children and young people, for example, only exist in social policies, but it is (partially) the case that who becomes known as a disabled child or young person will have some foundation in policies albeit that these policies focused on children’s lives are always shifting and changing (ibid.). Following Rabinow and Rose (2006: 195) we are interested in the ways in which policy discourses are constructed as ‘truth’ discourses about the ‘vital character of human beings’, which, in turn, result in individuals being worked on, or indeed working on themselves, in the name of individual and collective health. Rabinow and Rose (2006: 195) argue that exceptional forms of biopower – a form of social control over bodies and populations – can lead to ‘thanatopolitics’ – a politics of death which determines the possibilities of life. Our approach to policy analysis in this chapter is discursive (Durnova et al., 2016), and here our aim is to recognise and to pay attention to the dominant discourses in policy aimed 636

‘It’s about quality of life rather than length of life’  637 at disabled children, young people and their families. We have consistently sought to trouble taken-for-granted notions of ‘disability’, ‘child’, ‘parent’ and ‘family’, which are so often underpinned by neoliberal models of citizenship and normative narratives of child development (Goodley and Runswick-Cole, 2011). We have tried to demonstrate how these discursive constructions have enabled or threatened the lives of disabled children and young people who were constructed as being unable to conform to the requirements of ‘normal childhood’. More recently, we have done this by developing an understanding of policy through the workings of neoliberal-ableism which values white, heteronormative, able-bodied, (future) productive citizens above all those it renders ‘other’ (Goodley et al., 2014). We are influenced by post-structuralist ideas too. And while post-structuralism cannot be described as a ‘single theory’ (Bacchi and Goodwin, 2016: 4), it emphasises heterogeneity and contingency, so that seemingly immutable ‘things’ such as policy discourse can be recognised as ‘always and only’ temporary and contingent. In this view, political subjects – like disabled children and young people – are also understood to be ‘emergent or in process’ (Bacchi and Goodwin, 2016: 4). Policy, according to a post-structuralist view, refers to ‘how order is maintained through politics’ (Bacchi and Goodwin, 2016: 6). Our concern is how policy discourses are made and unmade and how they can maintain, or disrupt, the order of things in the lives of disabled children and young people and their families.

LOOKING BACK AT POLICY FOR DISABLED CHILDREN AND YOUNG PEOPLE IN ENGLAND Policy is, of course, constructed in and by particular times and spaces. And so, we begin with reflection on policy for disabled children in England over the last 20 years or so. This is a context which we know well. A little more than ten years ago, two of the authors of this chapter were working with disabled children, young people and their families in England as part of a project which asked how a raft of policy changes for children had impacted on the lives of disabled children, in particular (Does Every Child Matter, post-Blair? The interconnections of disabled childhoods (Economic and Social Research Council: RES-062-23-1138)). As part of the project, we carried out a focused policy review in which we considered how the contested categories of ‘child’, ‘disabled’ and ‘parents’ were constructed in children’s policy and practice from 1997–2010, a period of rapid policy change set in motion by the New Labour government, led by Prime Minister Tony Blair, in Britain under the banner Every Child Matters (DfES, 2004a; Goodley and Runswick-Cole, 2011). We wanted to explore the impact of these constructions of childhood on children and families’ everyday lives and their experiences of health, education and social care services. We saw the ways in which each of these categories (‘child’; ‘disabled’; ‘parent’; ‘family’) was constructed differently in different services, at different times, leaving disabled children, young people and their families underserved and without access to the support they needed. We described the ways in which policies as ‘discursive and conceptual resources’ were ‘in danger of recreating an exclusionary policy context for disabled children and their families’ (Goodley and Runswick-Cole, 2011: 71). The Does Every Child Matter, post-Blair? project became a significant study for us, as it was the starting point for us to try to think about the lives of disabled children and young people from which a new field of inquiry emerged: disabled children’s childhood studies (Curran and Runswick-Cole, 2014; Runswick-Cole et al., 2017). Disabled children’s child-

638  Research handbook on disability policy hood studies (DCCS) developed as a response to the dearth of knowledge and understanding of the lives of disabled children and young people in both childhood studies and disability studies (Curran and Runswick-Cole, 2014). Characteristically, DCCS ‘take a very different starting point from other studies of disabled children by moving beyond the discussion of impairment, inequality and abuse to enable disabled children to step out from under the shadows of normative expectations that have clouded their lives’ (Runswick-Cole et al., 2017: xxiii). DCCS seek to trouble these practices in their local, historical and global locations (Curran and Runswick-Cole, 2014). Most importantly, DCCS demands new forms of ethical engagement through research with children and young people, namely, in centring their voices in ways that recognise that they are experts in their lives, over and above a focus on their conditions and diagnoses (ibid.). Children and young people’s views on policy discourse were, we noted, rarely the focus of research inquiry. Ten years later, and in an attempt to enact the principles of disabled children’s childhood studies, we began a new project ‘Life, Death, Disability and the Human: Living Life to the Fullest’ (Economic and Social Research Council ES/P001041/1) that seeks to create new understandings of the lives, hopes, desires and contributions of children and young people with life-limiting or life-threatening conditions. During the Post-Blair project, we had worked with children and young people who had life-limiting and/or life-threatening conditions, and began to learn about their experiences of exclusion and marginalisation within their communities, in families, and, indeed, within studies of disabled children and young people’s lives (Runswick-Cole, 2010). And so, with young people embedded as co-researchers, the project became a space where disabled children and young people and families could talk about their experiences through story and through the arts (Liddiard et al., 2019). We describe our methodological approach in more detail below. And a decade or so on, we found ourselves surveying the policy landscape again. As we saw above, the Post-Blair project reflected on a period of rapid policy change in the area of childhood and disability. In 2008, Mittler identified a raft of legislative changes for disabled children as the Disability Discrimination Act (DDA) (Her Majesty’s Stationery Office (HMSO),1995); the Special Educational Needs and Disability Act (SENDA) (HMSO, 2001); Valuing People: A New Strategy for Learning Disability in the 21st Century (DoH, 2001); Every Child Matters (DfES, 2004a); Removing Barriers to Achievement (DfES, 2004b); Improving the Life Chances of Disabled People (Prime Minister’s Strategy Unit, 2005); The Children’s Plan: Building Brighter Futures (DCSF, 2007). Aiming High for Disabled Children: Better Support for Families (HM Treasury and DfES, 2007) had a particular focus on the lives of ‘children with life-limiting conditions’ and integrated the children’s palliative care strategy within the policy approach. And yet, since 2008 there have been many more policy changes for disabled children and young people in England. Most significantly, the Children and Families Act (HMSO, 2014) set out what were then hailed as the biggest policy changes for children labelled with Special Educational Needs and/or Disabilities (SEND) since the Warnock Report (DFES, 1978), which created the language of special educational needs in England, and the Education Act (HMSO, 1981), which brought the recommendations of the Warnock Report into legislation. In the aftermath of the onset of the global financial crisis, the United Kingdom elected a Conservative–Liberal Democrat coalition government which was committed to the politics of austerity. So, it was in the context of cuts to public services that the Children and Families Act (HMSO, 2014) was introduced. It promised a joined-up system for children with the intro-

‘It’s about quality of life rather than length of life’  639 duction of Education, Health and Care and an end to the ‘cliff edge’ in terms of services for young people transitioning to adult provision, at the same time as cuts to public services were being delivered. The Act also raised expectations that local authorities would increase opportunities for disabled children to participate in their communities, by asking local authorities to publish a ‘local offer’ of activities and services. In the green paper that informed the legislation, specific reference is made to the lives of children with life-limiting and/or life-threatening conditions a number of times. The first reference reads as follows: Whilst the circumstances of children, young people and their parents differ greatly; from young people requiring a few adjustments in class to children with life-limiting long-term conditions, families have many shared concerns. (DfE, 2011: 4)

Children and young people with life-limiting and/or life-threatening conditions are positioned at the opposite end of a spectrum to children and young people who need a ‘few adjustments’, with the caveat that families may have ‘shared concerns’. Reading this description through a biopolitical lens we can see that the ‘vitality’ of the lives of the children with life-limiting and/or life-threatening conditions is overshadowed as they are positioned in opposition to those who ‘need a few adjustments’. Throughout the document children and young people with life-limiting and/or life-threatening conditions are storied as being ‘the most complex’ (DfE, 2011: 9), or furthest away from achieving the status of the mythical ‘normal’ child (Curran and Runswick-Cole, 2014). In a context of neoliberal-ableism (Goodley et al., 2014), in which the ability to be productive is judged in the terms that the state recognises (that is, by working, consuming and not making any demands on the welfare state), children with life-limiting and/or life-threatening conditions are pushed to the margins. The regulatory effects of discourse construct and maintain the boundaries of who has, or does not have, a ‘vital’ life (Rabinow and Rose, 2006). The reforms which followed the Children and Families Act were hailed as the biggest for disabled children in a generation (DfE, 2014). Despite this, on 16 October 2019, the House of Commons Education Committee published its damning report on education for children with SEND, post-reform. The report documented the lack of accountability in the system and the lack of rigorous inspection. It highlighted the need for greater oversight as it described the Department for Education as having presided ‘serenely’ over ‘chaos’ for the last five years since the SEND reforms (House of Commons Education Committee, 2019: 3). It detailed the ‘treacle of bureaucracy’ (House of Commons Education Committee, 2019: 18) that parents wade through and the burden put on parents’ shoulders in navigating the system. The report found that there were still not enough employment and training opportunities for young people post-16. The report suggests that health and social care are still not working well with education for children with SEND. The report concluded that a generation of children is being let down. And so, despite these policy shifts, we were deeply saddened to see that so little has changed in the lives of disabled children who continue to live in poverty, experience exclusion in their schools and communities and are, so often, failed in transition to adult life (Hunter et al., 2019).

640  Research handbook on disability policy

PANDEMIC POLICIES In the wake of the global financial crisis in 2010, the impact of ten years of austerity in England has been devastating in the lives of disabled children and young people. In the final months of the Living Life to the Fullest project, the impact of the cuts to public services came into acute focus as the COVID-19 pandemic hit England in March 2020. The crisis was used by the English government as an opportunity to radically change public policy for disabled children, young people and adults. In March 2020, the government introduced the Coronavirus Act (HMSO, 2020) with the stated aim of giving national and local governments the flexibility they needed to meet the demands of a pandemic. Without clear justification of exactly how these specific and damaging changes would support the fight against the virus, the government launched an assault on the progress made by disabled people and their organisations over the last 30 years by suspending legislation. Specifically: ● The Coronavirus Act allows local authorities to introduce ‘easements’ that permit them to suspend disabled people’s rights, including children and young people’s rights to social care during the pandemic. The evidence suggests that cash strapped local authorities, and lack of national oversight, means that there has been inconsistent commissioning of services for disabled people across England (Roscoe et al., 2021). ● The legislation also allows the Secretary of State for Education in England to dis-apply the law in relation to the provision of education for children labelled with ‘special educational needs and/or disabilities’. ● Disabled children, young people and adults were also made vulnerable by changes which made it easier for them to be detained under the Mental Health Act (Runswick-Cole et al., 2020). The suspension of local authorities’ obligations to meet social care needs led Baroness Tanni Grey-Thompson, disability campaigner, to describe the Bill which preceded the Act as the ‘social care obliteration bill’ (BBC, 2020). The changes made it possible for local authorities, both overtly and by stealth, to cut support for disabled people during the pandemic. This is reflected by the exacerbation of the unequal distribution of social care resources across the country during the pandemic (Roscoe et al., 2021). In England, the government has repeatedly stated that its response to the pandemic has been driven by ‘the science’ and yet this mantra obscures the fundamental issue that there is no one version of science. The choices made by the government were not simply guided by scientists or clinicians but were (bio)political choices (Runciman, 2020). Scientific knowledge was framed as objective truth. By ‘following the science’ (Stevens, 2020), politicians sought to distance themselves from the impact of their actions which led to disabled people making up 59 per cent of all COVID deaths in March to July 2020 in England and Wales (Office for National Statistics, 2020). As the funding for the Living Life to the Fullest project comes to an end, COVID-19 has cast a long shadow; however, as the young co-researchers have been keen to remind us, the issues that we are witnessing during the pandemic were there before the pandemic. COVID has shone a light on existing inequalities in the lives of disabled children and young people.

‘It’s about quality of life rather than length of life’  641

LIFE-LIMITING AND LIFE-THREATENING CONDITIONS The children and young people who participated in the project and the Co-Researcher Collective all identify themselves as having life-limiting and/or life-threatening conditions. The terminology of ‘life-limiting’ and ‘life-threatening’ is, we admit, jarring to us as proponents of critical theories of disability. We feel uneasy sitting with a discourse which focuses on limit and threat, and, as a team, we have continued to reflect on the discomfort it brings. The language of ‘condition’ also jars as we are used to following Oliver’s (1990) distinction between disability (as social oppression) and impairment (physical difference). We, and the young people we worked alongside, are uncomfortable with the language of ‘condition’ which locates the ‘problem of disability’ firmly within a person (Mallett and Runswick-Cole, 2014). In our conversations as a research team, we felt unsure about how to resist a term which, despite its relatively recent history, dominates the policy sphere. The term ‘life-threatening’ first emerged in the medical literature and was taken up in practice as a response to a growing sense of discomfort about the use of the term ‘palliative care’ for those with shortened life expectancy. This discomfort was driven by the unhelpful elision of the terms ‘palliative care’ and ‘hospice care’ (Macauley, 2019). The term ‘life-threatening’ came to suggest that a condition may or may not shorten a patient’s life, and no defined period of life expectancy was offered (ibid.). This was contrasted with the term ‘terminal’ which is used, in medicine and policy, to describe patients who are expected to live for no longer than six months. The hope was that the term ‘life-threatening’ could simultaneously avoid the possibility of offering an inaccurate prognosis but would still enable patients, and their families, to access services and support (ibid.). The term ‘life-limiting’ was first used in the medical literature in 1979 (ibid.). In contrast to other medical terms, the term ‘life-limiting’ lacks specificity and is used for all conditions that may, at some time as yet unspecified, require palliative or hospice care (ibid.). The language of life-limiting conditions has been seen as a softer and more expansive language and is frequently used in paediatric palliative care as a result (ibid.). It nevertheless responds to the biopolitical demand that we establish the ‘truth discourse’ about a disabled child or young person before help is offered (Runswick-Cole and Goodley, 2022). In the UK, the phraseology of ‘life-limiting and/or life-threatening condition’ was taken up in the late 1980s when David Baum, a prolific paediatrician and founder of the Association for Children’s Palliative Care (ACT – now the large national charity Together for Short Lives), Ann Goldman the first ever consultant in paediatric palliative care (and now Vice President of Together for Short Lives), and Frances Dominica, a nun who co-founded Helen House Hospice, were publishing on the needs of these children and young people as a distinct group. The adoption of phraseology was confirmed when ACT published its Charter for Children in 1993 (McNamara-Goodger and Feudtner, 2012). Over time, the intended lack of clarity, which had been seen as soft and expansive, came to be seen as increasingly problematic in policy terms in England. And while the term ‘life-limiting and/or life-threatening condition’ is still very much used in expansive terms in everyday discourse, it has been clarified in the development of guidelines for children’s palliative care which resulted in the articulation of four categories of life-threatening and life-limiting conditions (Table 53.1). Despite this increasing specificity, including the reference to particular conditions, in the definition of the term in England, there is still no definitive list of which conditions are consid-

642  Research handbook on disability policy Table 53.1

Four groups of life-limiting and life-threatening conditions taken from Chambers (2018: 11)

Category 1 Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services. Examples: cancer, organ failures of heart, liver, kidney, transplant and children on long-term ventilation. Category 2 Conditions where premature death is inevitable; these may involve long periods of intensive disease-directed treatment aimed at prolonging life and allowing participation in normal activities. Children and young people in this category may be significantly disabled but have long periods of relatively good health. Examples: cystic fibrosis, Duchenne muscular dystrophy and SMA Type 1. Category 3 Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years. Examples: Batten disease, mucopolysaccharidoses and other severe metabolic conditions. Category 4 Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. Palliative care may be required at any stage and there may be unpredictable and periodic episodes of care. Examples: severe cerebral palsy, complex disabilities such as following a brain injury or spinal cord injury.

ered to be either life-threatening or life-limiting, hinting at the leaky nature of the boundaries of who and who is not in the categories of ‘life-threatened’ or ‘life-limited’. While medical and policy discourse shifts, sadly, it is still the case that a short life is seen as inherently of less worth than a long life. Moola and Norman (2011: 849 cited in Abbott and Carpenter, 2014: 1202) argue that we should critique the ableist assumptions that underpin the notion of the normal life-course which permeate policy discourse: These youths will always be compared against – and fail – the milestones associated with dominant time culture, leading to alienation and exclusion. Such constructions of developmental time need to be challenged in research and clinical practice, as one of the deeply buried ideological assumptions of our time.

We know, of course, that labels can often become totalising narratives in the lives of disabled people (Runswick-Cole, 2016). The label ‘life-limiting/life-threatening condition’ casts a long shadow over the lives and futures of children and young people who fit this epidemiological construction. Children with life-limiting/life-threatening conditions are expected to have short lives – they are limited in terms of the amount of time they are expected to live. The danger is of slippage, into seeing children’s lives as limited, not only in terms of time, but also in the ‘quality’ and ‘value’ of that life (Abbott and Carpenter, 2014). While children and young people often experience health conditions which impact on the quality of their lives, they also experience the social world as exclusionary and disabling (Abbott and Carpenter, 2014) – and yet, this aspect of the limitations put upon their lives is less prominent in public policy discourse. As we suggested above, policies have a constitutive quality to them: they construct the very entities they seek to address. And so here, ever mindful of the place of children and young people’s voices within these debates we turn our attention to how disabled children and young

‘It’s about quality of life rather than length of life’  643 people understand and are shaped by a policy discourse that frames and shapes their lives. We were interested in the insights they may bring to finding a ‘better’ way to refer to this particular group of disabled children and young people that honours their lived experiences and futures but also acknowledges their unique relationship to death and dying.

LIVING LIFE TO THE FULLEST As we explained above, we explored these questions as part of Life, Death, Disability and the Human: Living Life to the Fullest (hereby Living Life to the Fullest). Living Life to the Fullest aims to create new understandings of the lives, hopes, desires and contributions of disabled young people with life-limiting and/or life-threatening conditions in order to think differently about how society understands life and death. The study took place in England from 2017 to 2020. The project drew on narrative approach, ethnography and arts-informed methods to respond to the situation in which knowledge produced about the lives of those with life-limiting and/or life-threatening conditions rarely comes from disabled children and young people themselves. Rather, too often, the knowledge produced about this group of young people reflects the concerns of associated practitioners, service providers and professionals framed through medicalised, individualised and pathologised lenses (Liddiard et al., 2019). Throughout the project co-production was central to our approach. Young people with life-limiting and/or life-threatening conditions played a central role in early research engaging in impact planning workshops and in writing the bid for the research funding. Six young people became part of a Co-Researcher Collective. The Collective was involved in a range of ways throughout the project including (i) research design; (ii) participant recruitment; (iii) designing interview schedules and carrying out qualitative semi‐structured interviews using new social technologies; (iv) data analysis; (v) writing blogs and making films; (vi) presenting at conferences for academics, practitioners, disabled people and families and allies; and (vii) co‐authoring journal articles and a book (Liddiard et al., 2019; Liddiard et al., 2022).

METHODS Our approach to the recruitment of participants was purposefully broad, and was guided by policy discourses which characterise disabled children and young people as being up to 25 years old (HMSO, 2014). We asked participants to self-identify as disabled children and young people. Across the phases of the project we worked with 33 participants: 15 identified as children and 18 as young people (see Table 53.2 for details of the participants whose stories we include in this chapter). The project was carried out over a number of phases. In Phase One, we brought together the research partners, including disabled young people and their organisations, family members and community artists, to galvanise the project and to

644  Research handbook on disability policy Table 53.2 Pseudonym Hunter Ramesh Ruth Ella Rachel Jude Helen Adam Daniel John Edward Harry

Participant information table Participation type Description Skype interview Hunter is a politics graduate who is currently job hunting. He describes himself as very close to his family, particularly his mum. Online video Ramesh is a young man who says he has a strong sense of interview identity. He identifies that he has had to fight for a lot of support throughout his education. Email interview Ruth is a young woman who describes herself as a ‘solitary individual’ and lives independently, brokering her own care and support. Online video Ella is a young mum, who brokers her own care team. interview Online video Rachel is a young woman who says she has a strong disabled interview identity shaped by the social model of disability. Online video Jude is a young woman who spent a lot of time in hospital as interview a teenager; she got married last year because she (in her words) ‘doesn’t know what’s around the corner’. Online video Helen is a disabled young woman who cites faith as very interview important in her life. Arts retreat Adam is a young man, who participated in our arts retreat, who is really interested in photography and YouTube vlogging. Arts retreat Daniel participated in the arts retreat. He loves spending time with his family; he describes himself as particularly close to his Mum. Arts retreat John said he really enjoyed the arts retreat. He was very funny and witty with others in the group, and really wanted to work with his Dad in the future. Arts retreat Edward is a lively young person who loves dinosaurs. Arts retreat Harry attended the arts retreat, loved YouTube and fashion and wanted to work for Apple in the future.

recruit Co-Researchers. In Phase Two, we worked alongside the Co-Researchers to develop a shared understanding of methods, ethics and approaches to research. In Phase Three, we held a residential arts retreat with disabled young adults and their families (n=5), as well as two arts-based workshops with children and young people in their communities (schools, community arts spaces and hospices) (n=15). And we carried out 15 narrative interviews with young people using new social media. In Phase Four, we engaged with four parents and carers via online interviews and a focus group of four sets of parents held within a residential arts retreat for disabled young people. In Phase Five, the Co-Researcher Collective took the lead on coding and analysing the data using a broadly thematic approach (Braun and Clarke, 2006) using online discussions and via an in-person Analysis Retreat held in the south of England. The analysis drew explicitly on lived experience to develop the thematic approach. The final phase of the research was focused on disseminating our methods and ways of working in co-production as well as sharing our findings via a website (whycantwedream.co.uk) and an exhibition of artwork produced during the project. Our approach to the analysis here takes a thematic approach paying attention to the ways in which discursive repertoires are taken up and/or rejected by young people (Snow et al., 2004). Crucially, we are interested in how their understandings might offer alternative ways of thinking that have relevance for public policy discourse.

‘It’s about quality of life rather than length of life’  645

DISCUSSION In this section, we turn our attention to how the young people understood the language of policy and the impact on their lives. The analysis is informed by the data from the narrative interviews with young people and the arts retreat with children and young people. Our age range for participants was purposefully broad, we accepted participants from the ages of eight to 25. In terms of the upper age limit, we were guided by policy discourses around disabled young people and adults which consider disabled youth to apply up to 25 years (HMSO, 2014). We describe three key themes: the ways in which children and young people use the label put upon them; the ways in which they refuse the label; and how the label ‘life-limiting and/or life-threatening condition’ impacts on how others see them and the emotional impacts of this on young people. We begin by exploring how young people use the label. Using the Label Young people had chosen to participate in the study because they identified themselves as being young people with life-limiting and/or life-threatening conditions. When asked what the term meant, their responses varied but, not surprisingly, some young people’s understanding directly reflected contemporary policy discourse. For example, Ella described the distinction between a ‘terminal’ diagnosis and a ‘life-limiting’ one reflected in the language of medicine and policy described by Macauley (2019). [To me, it means] two things. That the illness is life-limiting in the sense it impacts what’s deemed as normal life achievements, goals and progression. Secondly that there are multiple ways in which the illness will inevitably cause death but the time frame cannot truly be judged unlike the term terminal when it’s more of a specific time frame and a particular cause of death.

Jude also gave a similar definition: life limiting means to me that…just as it sounds really, something that limits you from your life but doesn’t mean you are going to die the next day, you know you could have quite a long time you know.

But while some young people directly took up the language of policy, at the same time, they began to stretch the definition of the label. Jude also said: [life-limiting/life-threatening conditions] is not a negative way of putting it. Personally, although it is limiting it is not saying that’s the end, you know.

Ramesh also used the language of policy but offered a more affirmative approach suggesting that being given a label of life-limiting condition had enabled him to focus on the quality of life: Well I think [the label of life-limiting] is about quality of life rather than length of life, that’s maybe the most important thing, I mean you could live 100 years but be miserable.

Ramesh understands the category of ‘life-limiting’ as a softer and more expansive term (Macauley, 2019).

646  Research handbook on disability policy Research has reflected on a context in which children and young people with life-limiting and life-threatening conditions are outliving their prognosis and this has resulted in blurring the boundaries of the label (Abbott and Carpenter, 2014). In her discussion of the label, Helen also reflected on this changing situation: I think that the definition of life limiting used to be quite simple. You know you died before you had kind of reached adulthood, or like, mid-20s. I think medically those numbers are moving because you know treatments are moving and medical possibilities are moving.

Young people understood the changing meanings and leaky boundaries of the policy label. And as Ella later noted, everyone is different: I don’t really think about myself being ‘life-limited’. I mean, yes, there are certain things I can’t do but, again, I wouldn’t necessarily say my life is limited by my condition, it’s just different – but everyone’s lives are different!

For Ella , the term ‘ life-limited’  referred not to the length of life, but to restricted opportunities in life. Crucially, one young person offered a very different account of the term ‘life-limiting/ life-threatening condition’. Like all the participants, Ruth identified herself as having a ‘life-limiting/life-threatening condition’ to take part in the research, but Ruth understood her life to be limited by inaccessible environments, rather than her medical condition: explicitly supporting a social model of disability (Oliver, 1990). Life-limiting means to me that it prevents you from having a choice in living your life in the way you want to. The life-limiting disability dictates how you can live your life. This could mean that whenever you want to go somewhere away from your familiar home environment you need to take extra equipment with you – a ventilator maybe, or a coughing machine or a mobile hoist or a commode, the list is endless.

She also described the impact of living with mental health issues as having potentially ‘lifethreatening’ consequences. At 18 years old I had a psychosis and ended up in hospital for two weeks and developed the condition of Bipolar 2, which means that for the last 12 years I have regularly taken lithium and antipsychotic drugs and antidepressants, resulting in a great gain in my body weight, which could eventually be life-threatening, or lead to diabetes.

While one interpretation of Ruth’s account might be to suggest that she has ‘misused’ the term ‘life-limiting or life-threatening condition’ or ‘misunderstood’ the criteria for participation in the project, we were struck by her powerful account of the limits put on her life because she experiences the social world as exclusionary and disabling (Oliver, 1990; Abbott and Carpenter, 2014). Ruth’s use of the label offers a radical alternative to a language of policy focused on the limits placed on young people’s lives by their bodies (Oliver, 1990; Abbott and Carpenter, 2014).

‘It’s about quality of life rather than length of life’  647 Refusing the Label At times young people drew on discourses that dominate policy, but there were also times when they refused those discourses. Rachel was clear that the label had little relevance for her: I don’t want to live/lead my life thinking about death, that would be a bit depressing, so I just crack on with life, do what I want, go travelling, do a degree, get a job, you know hopefully do some fun stuff, have a bit of a laugh, get a bit drunk; no it doesn’t really, no it doesn’t impact my decisions.

Hunter told us: You know most of the time you don’t think about it, it is probably like again like someone who is able bodied, you don’t think about life or death very often but obviously occasionally you have that thought ... I feel at the end of the day there is no point dwelling on it because there is not a lot you can do to change it apart from, you know, take whatever treatment you are being offered and there is no point letting it worry you.

It is important to recognise that the young people were not unaware of their diagnosis or ‘in denial’ about their prognosis, it was simply not something they chose to focus on, and certainly not the only framework through which they wanted their lives to be read. Young people we met were, above all, focused on living, not dying. A participant in the arts  retreat, Adam, told us that ‘[in the future] I really want children and to be a motivational speaker’ (see Figure 53.1). Daniel also told us, at the retreat, that: ‘I get pulled in different directions but I know I want to work in a cinema.’ Three young men who participated in the arts retreat talked about their hopes to become a father (see Figure 53.2). The young people’s imagined futures emerge as radically different from those conjured up by the term ‘life-limiting and/or life-threatening conditions’. This is particularly true in terms of the significant barriers disabled young people face in relation to parenting and family-building (Liddiard, 2018), especially for those young people living what are considered to be short/er lives. Young people’s refusal to engage with the label reflects a cultural context in which short lives are valued less than other lives as evidenced by the campaign Together for Short Lives which seeks to ensure the best quality of life for children and young people who will live short lives (Together for Short Lives, n.d.). By refusing the label, young people were trying to shift the focus onto the lives they wanted to lead in the moment and in the future and away from a label which limits those expectations and prescribes a debilitating prognosis. Being Seen as Others See Us – Emotional Labour We argued above that there is a constitutive quality of policy discourse and that social policy discourses constitute the very people that they seek to address. Young people used and refused the label as they made sense of their lives and experiences, and yet, even when labels are rejected it is impossible to escape their constitutive powers. Biopolitics shapes, always and endlessly, our sense of self as well as the ways in which others see us (Runswick-Cole and Goodley, 2022). Young people told us that they were also acutely aware of the impact of the label on how they were understood by those closest to them. In a cultural context in which death is a difficult subject and the death of a young person more difficult still (Runswick-Cole,

648  Research handbook on disability policy

Figure 53.1

‘I want to dream big’

Figure 53.2

‘I want to be a father’

‘It’s about quality of life rather than length of life’  649 2010), acquiring the label of life-limiting and/or life-threatening conditions changed their relationships with other people. Helen explained: I think people are just frightened … especially with the life-limiting aspect of it, especially as my condition deteriorated and it began to become clear that I had sort of a couple of, sort of near death experiences, people just didn’t know how to deal with that at all, like they didn’t know what to say like they were just scared, I think they were scared that I might die and they just didn’t know how to deal with that.

And Rachel describes the impact of acquiring the label on her family members’ perception of her: Some of my family have found it difficult to view me as an independent young woman and often unconsciously put limiting beliefs onto me.

And so while young people were aware of how the label changed the ways in which they were seen, they also described the impact of the label on family and friends. For example, Rachel talked about the impact of her prognosis on her sister in particular: I think my sister, when she realised how serious my condition was, it was life limiting, it affected her in a way that I don’t think she really let on.

Rachel also spoke about the impact on her parents: [My parents] are affected emotionally. Obviously, they are aware of the fact that my condition is life-limiting – even though this is not discussed! When I am hospitalised – this takes a great toll on my whole family – causing a great deal of physical  and emotional distress.

Helen also explained her worries for her family in the future: I think I worry about my family and, erm, I worry more about what would happen to people that I would leave behind, like if something was to happen to me.

Young people were clear that managing the responses of other people to living with the label of ‘life-limiting/life-threatening condition’ was a form of emotional labour that was burdensome and unwelcome, but ultimately necessary, in their relationships with family members. Young people routinely spoke of the ways in which they would have to manage, or provide emotional support to, close others at particular times – even times that were very difficult or sensitive for the young person – for example, upon illness, the progression of impairment and changing prognoses, and even in conversations about planning for death and dying. And sometimes, young people were also aware of their parents’ emotional labour in caring for them. Jude was grateful for this labour and describes how she felt that she had been set free by her parents not sharing the label with her when she was younger: I think one of the things my parents did with me is they never said to me what the doctors were saying, so I never knew that I was at a life-limiting stage and I never knew when I wasn’t if you see what I mean, so I just lived life and I just kept trying to get to the, get to the next stage, that was the most important thing for me.

650  Research handbook on disability policy

CONCLUSIONS We conclude by considering how young people’s insights can help us to find a ‘better’ way to refer to this particular group of disabled children and young people that honours their lived experiences and futures but also acknowledges their unique relationship to death and dying. This is no easy task. As we’ve seen, young people are often familiar with the ways that ‘life-limiting and/or life-threatening conditions’ are used in policy. At times, they used the label in very similar ways too. The label performs an important role in allowing young people to recognise those with similar experiences to themselves and allows them a short-hand way of communicating (some) of their needs to those around them. However, while at times they use the label, at other times, they were keen to re-define or even to reject a label which often had little relevance to them. They were acutely aware of the impact of the label on how they were seen by other people, leading them to have to manage the fears and grief of others, which they experienced as burdensome emotional labour. As we have argued, we are discomforted by the language of ‘limit’ that so easily slips into seeing children and young people as limited, not only in the time they may have to live, but in the quality and value of their lives. We note the way in which the language of ‘condition’ locates the ‘limit’ within individual bodies and minds, rather than in exclusionary and disabling environments. We are, at the same time, aware of the history of a term which was originally, at least, intended to offer a softer and more expansive category that allowed children, young people and their families to access services but did not have the negative connotations sometimes associated with being labelled a person who receives ‘palliative care’. We argue that this softening is still a response to the demands of biopower which means that we must identify the ‘truth’ about disabled bodies before help can be offered (Runswick-Cole and Goodley, 2022). Labels function in important ways to validate a person’s need for help and support and for a sense of self. One young person told us that, despite many acute hospital admissions, she has never been given a label or any prognosis, which made her feel like an imposter in services and the wider community of young people with the label. In England, post-pandemic, a new policy rhetoric has been taken up and reproduced in public policy discourse – ‘build back better’ (Roscoe et al., 2021: 12). Disabled children, young people and adults, their families and other allies are calling for the government to ‘build back fairer’ (ibid.). In order to do this the government needs to address the deficit discourses that continue to dominate the discussion for disabled children and young people’s lives and which ‘other’ and marginalise disabled young people. These policy discourses diminish disabled children’s life chances and opportunities in material ways. In the context of the Living Life to the Fullest project, disabled children and young people spoke about their hopes, dreams and aspirations, their desire to live full lives and to make the most of every moment. Above all, they wanted to live their lives to the fullest. Perhaps it is time to shift the policy discourse to try to loosen the grip of biopolitics, and thanatopolitics, in children and young people’s lives. Perhaps it is time to turn instead to the ‘vitality’ of the lives of children and young people who, above all, want to fulfil their hopes, dreams and aspirations. Perhaps they should be known, simply, as ‘children and young people who want to live their lives to the fullest’.

‘It’s about quality of life rather than length of life’  651

NOTE 1.

Start of endnote. We are grateful to the young people and their families for their generous contribu-b tions to the research. We are grateful for the support of the Economic and Social Research Council UK (grant numbers ES/P001041/1 and RES-062-23-1138) which funded the research on which this chapter is based. End of endnote.

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54. Inclusive sexuality education: achieving sexual justice, sexual pleasure and sexual agency for women with disability Denise Beckwith and Nicole Laurance

EXPERIENCING EXCLUSION: DENISE’S REFLECTION ON SEXUALITY EDUCATION From my time at high school there is one particular day that stands out: it was the day my class was to have our first sex education lesson. I was 12 years old and my parents had signed the consent form so I could participate in the class with my peers. Some parents didn’t want their children attending the sex education class, but my parents thought it was a good idea – after all, my mother was a sexual health nurse. Just before the class started, the physical education teacher approached me. “You can go and spend time in the principal’s office”, she said. I thought I was in trouble for some reason, and I couldn’t work out what I had done wrong. She continued, “This class won’t be relevant to you.” I was so confused. Why was this not relevant to me? When I arrived at the principal’s office, I told him, “You know my mum will be here tomorrow about this. You might want to try and get me back in the class; she is not going to be happy.” The principal hardly looked up as he reiterated the reason for my exclusion, before telling me to sit quietly in his office until the class was finished. The next morning, as I predicted, my Mum angrily marched through the school gates and into the administration building, demanding to see the school principal. A staff member pointed nervously, “His office is that way.” Mum and I headed to the principal’s office. I politely introduced my mum to the principal, who was taken aback by her arrival. He ushered my mother inside and closed the door. I could easily hear their conversation while watching the events unfold through the door’s glass panel. My mum declared she was a sexual health nurse and without taking a breath clearly stated, “Information is power, and you and your school are not giving that to my daughter. Denise needs and has a right to attend the sex education class. You will re-run the class and with a different teacher and Denise will attend.” I did attend the class, but I knew all the content. I couldn’t understand why my mother had made such a fuss as I hadn’t learnt anything. What I did learn was that my mother had already, unlike most of the other students, told me ‘the facts of life’. When I got home from class, I asked her why she had insisted that I attend the class. She explained the importance of standing up for your rights. My parents also taught me to understand my rights, as like all parents, they couldn’t fight every battle for me. Their actions empowered me to create my own change through their example.

653

654  Research handbook on disability policy I can still recall the exact date, Thursday, 23 May 1991: the day I was excluded – excluded as a girl who has disability.

INTRODUCTION This chapter uses a social model of disability framing to explore the marginalization experienced by women with disability1 in accessing sexuality education and obtaining sexual agency and justice. It locates the marginalization of sexuality and disability as a form of disablism and draws attention to the experiences of women with disability. To do this, we draw on Beckwith’s (pending publication) phenomenological research focused on women with physical disability in Australia and their experiences of sexuality education and sexual expression. Nineteen women with physical disability aged 22–83 years participated in the study. Half of the women identified as sexually and culturally diverse and were from urban and regional areas of Australia. The qualitative study focused on the women’s identity, sexual education experiences, sexual expression and experiences, including sexual violence; their identity as women with disability and sexual beings; and a photovoice component. In this chapter, we draw from interview data to illustrate themes. Models of Disability The World Health Organization (WHO & World Bank, 2011) points out that disability is an inevitable part of being human and will be experienced by almost everyone – temporary or permanent – across the lifespan. Gill (2015) notes that traditionally two models have been used to explain disability: the medical and social models. The medical model focuses on the impairment where disability is a result of a genetic disposition, ongoing health condition or an injury, requiring the attention of medical practitioners for cure, management or rehabilitation in order to return the impaired body to some form of ‘normal’ functioning, and it has been argued that very few people would be able to attain this normative embodiment (Gill, 2015). The social model recognizes disability as a social construction and a form of oppression, created by inaccessible, exclusionary social environments and ableist attitudes imposed on top of the impairments (Gill, 2015; Lawson & Beckett, 2021; Mitra, 2018; Morris, 2001). However, in the past three decades, different models of disability have been introduced and one of the most influential of these is the human rights model of disability. This model emphasizes the primacy of human dignity with a secondary consideration of the individual’s medical characteristics, only if necessary. Therefore, the human rights model of disability complements the social model as it too locates ‘disability’ outside of the individual, putting the onus on society as a whole (Lawson & Beckett, 2021). Moreover, it is important to consider that disability identity differs across populations and communities as geographical, socioeconomic, socio-political and sociocultural factors all play a major role in how people with disability construct their identity. Ableism and Disablism As Goodley (2017, pp. 14–15) states, “[t]o be disabled is to be politicised.” Terms such as disablism and ableism are used by critical disability scholars to acknowledge the ongoing marginalization of people living with impairments (functional limitations), whether these

Inclusive sexuality education  655 are congenital or acquired. Since this section has discussed key terms within ‘disability’, it is appropriate to briefly explore both highly contested terms, noting they are not exclusive and are often entangled. Ableism is recognized as a set of values and practices projecting bodily (aesthetic) perfection, functionality and autonomy as essential attributes necessary to be considered fully human (Campbell, 2009). Disablism is the exclusion of people with disability from social, political, cultural and economic life opportunities through raising and maintaining attitudinal and structural barriers, impeding their psychosocial and emotional wellbeing (Goodley, 2017; Liddiard, 2021; Thomas, 2007). Liddiard (2014) suggests forms of internalized oppression/ableism occur when people with disability take on prejudiced, problematic and dominant societal messaging stemming from experiences of prolonged ableism. In the context of ‘disabled sexuality’, Bahner (2020) refers to the concept of internalized sexual ableism due to people with disability continually being denied their sexuality, discussed in detail below.

SEXUALITY AND DISABILITY Sexuality is central to the human experience; however, people with disability are largely excluded from sexual expression and experiences. This is particularly so for women with disability, who experience multilayered oppression due to intersecting categories of difference, including (but not limited to) gender, race, class, age, sexuality, and chronic illness (Atrey, 2020). Achieving sexual justice, sexual pleasure and sexual agency is not often afforded to women with disability and this denial is exacerbated when sexuality education is not inclusive and relatable to women with disability. Women with disability are often assumed to be incompetent, incapable, ‘asexual’ and passive whilst paradoxically also being labelled as ‘hypersexual’ and even ‘fetishized’ (Bahner, 2020; Gill, 2015; Liddiard, 2018). Although women with physical disability are predominantly ascribed the label of ‘asexual’ due to their perceived lack of sexual functioning and inadequacy, women with intellectual disability are typically assigned the label of ‘oversexed deviants’ (Bahner, 2020; Frawley & O’Shea, 2020; Gill, 2015; Hollomotz, 2011; Liddiard, 2018). Despite the progress in ensuring the civil and educational rights of people with disability are represented within international and national instruments and legislation, as well as the growing recognition of the rights of people with disability to lead fulfilling social and sexual lives, ‘disabled sexuality’ continues to be an anxiety-provoking, controversial and often silenced topic by people without disability, resulting in people with disability, particularly women with disability, being excluded from sexuality education (Campbell et al., 2020; Liddiard, 2018; Rohleder et al., 2019; Treacy et al., 2018). Despite attempts to standardize and improve the national curriculum (Ezer et al., 2019; UNESCO, 2018), sexuality education in Australia, where our study took place, continues to position sexuality and sex as an ableist, heteronormative and even gendered act (Bahner, 2020; Campbell et al., 2020; Davies & Kenneally, 2020; Liddiard, 2018; Shah, 2017; Waling et al., 2020). Within an Australian context, individual states and territories remain responsible for the implementation of the national curriculum. Similar devolution of responsibilities in comparable countries can be seen. Unfortunately, this not only results in putting the onus of delivering comprehensive sexuality education (CSE) on the state or territory and even the school or teacher but also establishes inconsistent and often conservative information sharing,

656  Research handbook on disability policy consequently privileging ableist, heteronormative and dominant knowledges (Ezer et al., 2020; Frawley & O’Shea, 2020; Waling et al., 2020). These experiences of dehumanization, prejudice and discrimination constitute not only ableism but also ‘sexual ableism’ and internalized ableism, impacting the right of people with disability to exercise their sexual agency (Gill, 2015; Hollomotz, 2011; Shakespeare & Richardson, 2018). These same protectionist, paternalistic and stigmatizing discourses have contributed to excluding people with disability, particularly women with disability, to the extent of overregulating their lives giving rise to a focus on duty of care rather than exercising dignity of risk (Gill, 2015).

DISABILITY, WOMEN AND SEXUALITY Research across the globe has established that women with disability often face intersecting forms of oppression and exclusion compared to their male counterparts in all social domains, including attaining sexual justice, sexual pleasure and sexual agency (Crenshaw, 1991; Liddiard, 2018; Loeser et al., 2018; Macdonald et al., 2021; Parsons et al., 2017; Thomas, 2006). Ultimately, feminist, disability and queer scholars claim heterosexual men with disability “exercise greater sexual agency because of their increased access to sexual power that (hegemonic) masculinity, heterosexuality and heteronormativity provide[s]” (Liddiard, 2018, p. 20) within ableist hetero-patriarchal society. This is reflected in Mae’s (Beckwith participant) response. Mae is 38 and acquired her physical disability as a result of a spinal injury. Mae is a mother of two, lives in an urban area and is a domestic violence survivor. I don’t think women and our expression of sexuality and femininity is as promoted as it is for men because we need to not emasculate these young men, but we need to over-protect the women and not let them be single, independent entities. Women are always going to be dependent. They’re always going to have someone to look after them. Whereas we need to let these men be independent, free, masculine and expressive and sexual. And it’s hard, but not all men with a disability are allowed that.

Additionally, similar narratives to those of Liddiard (2018) were shared by the women with physical disability in Beckwith’s research where they revealed their divergent embodiment of sexuality within ableist and normative environments resulted in internalized sexual ableism, hiding their bodies (impairments) out of shame and fear of being desexualized. This is reflected within Elizabeth’s story: For a long time, I just didn’t want anyone to know … I’d always wear long skirts, long maxi dresses where you couldn’t see my prosthetics. If I went out in the wheelchair and I didn’t have my prosthetics at that time, I’d still put on knee-high boots and tape them on to my thighs so that no-one would stare.

The following quote from Mae reveals how these carelessly assigned stereotypes can impact the sexual self-esteem of women with disability after attempting to explore both social and sexual relationships on a popular dating app: It [the popular dating app] was shit. It was toxic, I disclosed my disability and I had a picture of myself in my wheelchair to start with and then I was wondering why I was getting these invites to be daddy’s little girl and a lot of BDSM and, you know, come be my submissive. I asked a male friend, “Why

Inclusive sexuality education  657 the fuck am I attracting daddies?” I’ve never, ever explored dominant, submissive and any of this shit before in my life. What the fuck has this come from? They think I’m on there for that.

These stereotypes are problematic for two key reasons. First, it is important to understand that asexuality is an authentic sexual identity that is an intrinsic element of a person’s sexual orientation and should not be automatically assigned to people with disability (Hunt et al., 2018; Owens & de Than, 2015). Such automatic assignment not only justifies denying the legitimacy of asexuality as a genuine sexual orientation and therein discriminating against people identifying as asexual (Milligan & Neufeldt, 2001), it also results in the desexualization of people with disability, particularly women with disability, usually in the guise of protection or convenience, or to reinforce societal norms (Bonnie, 2014; Liddiard, 2018). Second, these stereotypes feed into the social misconceptions that women with disability do not require the same level of access to health, education and socio-political and economic opportunities. These gendered oppressive responses are further supported by Titi’s (Beckwith participant) stance on the social construction of women with disability’s sexuality experiences. Titi is 53 and identifies as a lesbian woman living in metropolitan Sydney, Australia. Titi has a congenital and degenerative physical disability. We’re [women with disability] socialized to be passive … We’re [all women] socialized to be objects, to actually ask for, which would then be put as demand by the other side [men] to ask for pleasure, even today is construed as being wanton or cheap or easy ... The vilification of women as sexual beings, it’s that sort of whore/Madonna juxtaposition that we’re supposed to be the gatekeepers of sexual propriety. At the same time, we’re [all women] also supposed to be open to what men want from us.

‘Disabled Sexuality’ The marginalization of ‘disabled sexuality’ and ableist attitudes towards the lived experiences of impairment, sexuality and identity mean sexuality is not considered in its broadest sense, as issues of ‘survival’ are prioritized (Waxman Fiduccia, 2000, p. 168) which is exemplified in Finger’s (1992, p. 8) infamous quote: Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about – and formulate strategies for changing – discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction.

It is therefore essential to use a comprehensive and inclusive definition of human sexuality that highlights the “social aspects of sexual being in ways that are positively enriching and that enhance personality, communication and love” (WHO, 1975, p. 6). Further, the United Nations Population Fund (UNFPA, 1995) elaborates on the social aspects of sexuality by including reproductive health: reproductive health … implies that people are able to have a satisfying and safe sex life and they have the capability to reproduce and the freedom to decide if, when and how often to do so. Implicit in this … are the right[s] of men and women to be informed and to have access to safe, effective, affordable and acceptable methods of family planning of their choice, including regulation of fertility … (UNFPA, 1995, p. 40, paragraph 7.2)

658  Research handbook on disability policy Similarly, Rule 9.2 of the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities states that people with disability “must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood” and have a right to “information in accessible form on the sexual functioning of their bodies” (UN, 1993, Rule 9.2). The UN CRPD and its Optional Protocol (UN, 2006) reinforce these Rules, albeit without explicitly naming sexual rights; however, Article 12 emphasizes the right for people with disability to have equal access to all aspects of life and have choice and control over how they express their sexuality, as well as engage in consensual sexual relations as only a few aspects of the human experience (Owens & de Than, 2015; Rohleder et al., 2019; Shah, 2017). The position taken in this chapter aligns with the definition of sexuality adopted by the WHO (2006), extending beyond the act of sex encompassing “gender identity, sexual orientation, eroticism, pleasure, intimacy and reproduction” (p. 5). Since this chapter explores how human rights approaches and other UN treaties can apply to sexuality, it is key to consider how sexuality is expressed and experienced, and how it can vary significantly depending on a range of factors, including biopsychosocial, economic and cultural (Mitra, 2018; Rohleder et al., 2019). Extending the notion of social stratification, Rubin (1984) developed the ‘charmed circle’ – a system of sexual stratification – showing how heteronormative sex is privileged over divergent sex. Rubin argued that Western societies use sexuality hierarchies to sanction heteronormative sexuality behaviours and identities as acceptable within social and political contexts. Therefore, sex acts that fit within these dominant moral, marital, heterosexual, reproductive and functional frameworks are often exclusionary to people with disability, and consequently people with disability, particularly women with disability, continue to be denied access to sexual agency, sexual pleasure and sexual justice (Plummer, 2006; Rubin, 1984; Sik Ying Ho, 2006). Plummer (2006) and Sik Ying Ho (2006) point out important limitations within Rubin’s hierarchical system as it fails to acknowledge different social axes such as gender, disability, age, race, ethnicity and class, resulting in intersectional oppression. So, in the context of women with disability, taking an intersectional lens to these sexuality hierarchies is vital in order for their stories to be told, in turn reclaiming and exercising their sexual agency. Sexual ableism privileges sexual normalcy and is entrenched within heteronormative ideals of sexuality (and therefore sexuality education). This is often impossible to be met by diverse sexual minority groups, but especially people with disability, as the diversity of their bodies and minds do not fit those ableist norms (Liddiard, 2021; McRuer, 2006; Shildrick, 2009). Sexual ableism denies women with disability reproductive justice and freedom (Waxman Fiduccia, 2000) through the use of fertility regulation (Liddiard, 2021). Gill (2015, p. 3) defines sexual ableism as “the system of imbuing sexuality with determinations of qualification to be sexual based on criteria of ability, intellect, morality, physicality, appearance, age, race, social acceptability, and gender conformity”. He argues that sexual ableism inherently rejects how disability and its myriad differences can yield valuable and “unique perspectives of personhood, competence, sexuality, agency and ability” (p. 3). Kim, one of Beckwith’s research participants, shows how trying to live up to the sexual normalcy ideals can have significant impact on their disability ‘acceptance’, as well as their experiences of sexual opportunities. Kim is 49 and married with children. Kim acquired her physical disability in her early 30s. My disability has impacted on my sexual expression and experience. At this stage, experiencing chronic pain, I would say it has had an impact. It has changed to sex being less spontaneous. I don’t

Inclusive sexuality education  659 have the luxury to go into certain places and have sex in positions that hurt. It has impacted by having to prepare more and that is one of the things that has had a huge impact on my partner because it’s taken away from sexual spontaneity.

As previously discussed, the sexuality of women with disability is repeatedly conceptualized through two paradoxically contrasting stereotypes. On the one hand, they are being desexualized, being denied the existence and recognition of their sexual self, whilst simultaneously being portrayed as sexually deviant and promiscuous and in ‘desperate’ need to control their ‘uncontrollable’ urges (Bahner, 2020; Hollomotz, 2011). Women with physical disability frequently experience desexualization in various forms due to the lack of access to private spaces which not only denies opportunities to sexual expression but also to explore their sexuality autonomously (Liddiard, 2018). The following excerpt from Cleo Patra embodies this denial to sexual agency. Cleo Patra is 45 and was forcibly sterilized when she was 11 years old. She currently lives in an aged care facility following the closure of the rehabilitation service where she was receiving treatment. Her partner separated from her while she was in the rehabilitation service. My disability has had a major impact on my sexual expression and experience because I’m not seen as a competent woman with the same desires and needs as able-bodied women. I’m not seen as desirable. Most people see me as desexualized. Being single has contributed to my desexualization and also being in the nursing home.

Cleo Patra’s experience shows how inherent paternalism and protectionism within institutional settings not only inhibits the opportunity for women with disability to explore and experience sexuality but also reinforces sexual dis/ableism (Campbell et al., 2020; Liddiard, 2018; Shakespeare & Richardson, 2018). Campbell et al. (2020) contend these same sexual ableist attitudes and practices are pervasive within social institutions where women with disability acquire their sexuality knowledge, including family, health, media and education, and can be detected within the ‘hidden curriculum’ of many formal sexuality education programmes since these largely neglect to incorporate positive ‘disability-specific materials’ (Rohleder et al., 2019; Martino, 2017). The lack of disability-specific content as part of Kate’s (Beckwith participant) sexuality education is reiterated below. Kate is 22 and identities as a queer woman with congenital physical disability. I think that’s what also frustrated me when I was going through sex education. I still had this idea that you had sex in the one position and I was thinking that may or may not work for me. I don’t know. How am I supposed to know beforehand?

Many disability and sexuality scholars point out that there can be profoundly negative consequences attached to being excluded from receiving sexuality education (Campbell et al., 2020; Hollomotz, 2011; Liddiard, 2018; Martino, 2017). For example, Hollomotz (2011) noted when women with disability have had little to no access to adequate sexuality education it increases their risk of experiencing sexual abuse or being victimized. In fact, women and girls with disability are more at risk of experiencing many forms of violence, compared to their able-bodied peers, and these can be in the form of (but are not limited to) sexual and reproductive rights violations; restrictive practices; coercive and involuntary medical treatment; and social isolation (Dowse et al., 2013; Henry et al., 2017). As Hollomotz (2011, p. 12) argues, “undue protection from risks and opportunities associated with everyday life may disable individuals

660  Research handbook on disability policy from becoming competent social and sexual actors and from accessing information and services that have the potential to reduce sexual ‘vulnerability’.” The following quote from Mae (Beckwith participant) stresses the importance of having access to inclusive and relatable sexuality education for women with disability in order for them to lead fulfilling romantic and sexual lives. You’re in a relationship and it does turn abusive and you go, “Well, at least he wants to be with me.” And so at no point through any of that was I really taught you have a right to say no and that coercion is wrong and this isn’t healthy and it’s not a healthy relationship you’re in if he’s constantly nagging and pressuring and pushing and coercing you into giving in. There’s no healthy boundaries there…So sex, it wasn’t something to be enjoyed. It was something to endure.

Furthermore, as Esmail et al. (2010, p. 14) identified, access to relatable and inclusive sex education has the potential to challenge myths and stereotypes around ‘disabled sexuality’, promoting healthy and positive sexual behaviours. The subsequent section expands the discussion on formal and informal spaces where relatable sexuality education can take place and how this enables all people with disability but especially women with disability to make informed choices about their sexual selves in turn reclaiming sexual justice, sexual pleasure and sexual agency.

ACCESS TO RELATABLE SEXUALITY EDUCATION The lack of relatable and inclusive sexuality education perpetuates the disablism and ableism that continues to deny women with disability their sexual agency. Shah (2017, p. 3) notes the early beginnings of this, saying “formal sex education has been, at best severely truncated and watered down, or at worst absent from the lives of physically disabled students”. Having access to sexuality education has been recognized as a human right (WHO, 2006). However, traditional and contemporary sexuality education programmes have been consistently criticized due to their continued focus on the biological, reproductive and functional aspects of sexuality, only to reinforce the idealized female body as the societal norm and therefore desexualizing and excluding women with disability (Bahner, 2020; Bonnie, 2014; Fisher et al., 2019; Liddiard, 2018; Meixner, 2021). Furthermore, the discourse of sexual pleasure and desire is absent not only from sexuality education and its related policies and practices, but also from the sexual lives of women with disability (Liddiard, 2014; Shildrick, 2009; Tepper, 2000). Heteronormative ableist messaging is pervasive and can result in internalized ableism where women with disability believe they are unworthy of achieving sexual justice, sexual pleasure and sexual agency (Bahner, 2020; Liddiard, 2018). Since sexuality, sexual identity and sexual expression are all key aspects of the human experience, it is critical for stories, lived experiences and perspectives of women with disability to be at the core of sexuality education, legislation, policy and practice, upholding the mantra of the disability rights movement ‘Nothing about us, without us’ (Gill, 2015). As mentioned previously, within an Australian context, sexuality education has begun to incorporate some intersections of human sexuality, aligning with UNESCO’s ‘Guidelines to CSE’ as these specifically state the cognitive, emotional, physical and social aspects of sexuality need to be covered from both a teaching and a learning perspective (UNESCO, 2018). However, formal sexuality education within an Australian context continues to position

Inclusive sexuality education  661 sexuality and sex as an ableist and heteronormative act where queer and disabled sexualities, identities and voices, together with discourses of pleasure are still absent (Bahner, 2020; Campbell et al., 2020; Davies & Kenneally, 2020; McMinn, 2017; Meixner, 2021; Shannon, 2016). Further, Goodley et al. (2014) note how neoliberal and ableist educational approaches to sexuality education tend to focus on independence, personal productivity and choice and control, all notions that tend to exclude people with disability, particularly women and girls with disability. Davies and Kenneally (2020, p. 373) critique these notions by asserting that in “actuality, no human exists independently” since all humans are rooted in sociality and interdependence on others (family, community, services, structures and technology) for our shared existence. Formal Sexuality Educational Spaces As previously highlighted, there are a number of ambiguities within the Australian context, even though the Australian Curriculum for Health and Physical Education was developed as an important framework so schools and teachers could provide comprehensive and coherent sexuality education throughout the states and territories (Ezer et al., 2019). These ambiguities, under the guise of ‘flexibilities’, mean that it is at the schools’ discretion (and often reliant on the availability of knowledgeable and willing teachers) (Shannon & Smith, 2015) how the national curriculum is implemented, which depends on the geographical and local community’s needs (ACARA, 2016). Hence, the conclusion can be drawn that the Australian Curriculum for Health and Physical Education is in fact not a curriculum but a framework and therefore how it is implemented in practice continues to be inconsistent resulting in varied sexual and relationship knowledge among students across different schools (Ezer et al., 2019; Shannon & Smith, 2015). Kafer and Kim (2017, p. 128) point out that “the benefits of disability rights legislation are rarely spread equally across all populations”. Since it is widely recognized that women and girls with disability experience intersectional discrimination and oppression in all social arenas, “in securing independent living, in employment, education, healthcare, social care, housing, transport, land-ownership, access to cultural domains” (Thomas, 2006, p. 178), this may exclude them from being able to access relatable CSE. Noting gender inequities, it is essential that intersectionality is at the centre of CSE policies and frameworks. Kate’s (Beckwith participant) reflection below shows individual teachers’ motivation and beliefs heavily influenced whether students (particularly those with disability) would receive sexuality education at all: We didn’t get any sex education in primary school. It really depended on the teacher you had and whether they decided they wanted to give you any sex education. For example, my twin sister who was in the other class, she did get some sex education in primary school, but I didn’t. I thought it was weird not all students received sex education. I still think it is weird because it should be either you mandate it, or you don’t – say you have to do it. One teacher can’t pick that they don’t want to do maths.

While the Australian Curriculum for Health and Physical Education has shifted away from biology and risk-based discourses to recognize the sexual agency of young people, information provided (if at all) to young people with disability continues to focus on those discourses (Frawley & Wilson, 2016). Due to the variability of how the curriculum is used and interpreted, sexuality education provided to students with disability continues to mimic, at worst,

662  Research handbook on disability policy abstinence and at best harm-reduction approaches to sexuality education (Frawley & Wilson, 2016). Meaningful, relatable sexuality education is multifaceted, where diversity, in all its factors, is considered a valuable tool within sexuality education (Esmail et al., 2010; Gill, 2015) and where different sexual practices are openly, safely and respectfully discussed (Hollomotz, 2011). These ideas are reflected in the following narratives by Kate and Amelia (Beckwith participants). Amelia is 28 and lives in a regional area. She identifies as bisexual and has a congenital physical disability. Sometimes I felt the conversations weren’t relatable to me due to both my disability and my sexual orientation. See, I think that’s really what it was. It wasn’t that they didn’t include me – it was more that they weren’t relatable to me. I didn’t feel like I fitted in those conversations, even though they didn’t actively exclude me from them. (Kate) Sexual orientation diversity wasn’t discussed in detail during sex education classes. Gay people were mentioned but only in the way of negative connotations. Straight people were mentioned and that was kind of it. Even mentioning sexual diversity would have been good. (Amelia)

There is a considerable amount of research conducted on the efficacy (or not) of CSE approaches focusing on exploring sexuality knowledges of children and young people (Ezer et al., 2020; Waling et al., 2020); however, the voices of children and young people with disability are largely still missing within these studies (Frawley & Wilson, 2016). While policy and practice in disability is increasingly being informed and shaped by people with disability, research and practice in sexuality education is still primarily informed by those without disabled sexuality embodiment (Frawley & Wilson, 2016). More needs to be done in this space and this chapter aims to add to existing literature where women with disability have been at the centre of the knowledge creation. Informal and Self-Exploratory Sexuality and Educational Spaces Sexuality knowledge, esteem and pride are often shaped by the types of information that is available. As discussed earlier, women and girls with disability occupy diverse spaces (including social institutions and residential settings), often not by choice, due to “individualised regimes of care” (Liddiard, 2014; 2018). It is important to keep in mind that no matter the changes to formal sexuality education within primary, secondary and even tertiary educational settings, these changes will not assist women and girls who are absent from those educational settings (Dowse et al., 2013; Hollomotz, 2011). As Hollomotz (2011) points out, many people with disability, particularly women and girls with disability, experience institutional limitations regarding their autonomy, privacy and decision-making over their sexual selves, and therefore self-determination and even rights-based discourses are not always recognized as relevant within their ‘home’ environments. “Whether an individual is able to exercise self-determination is therefore very much dependent on environmental factors” (ibid., pp. 44–45). It is therefore imperative that relatable and intersectional CSE is a ‘whole community approach’.

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INTERSECTIONALITY AT THE CENTRE OF CSE POLICIES As discussed throughout this chapter, the underpinning of CSE frameworks and policies by human rights is significant (Davies & Kenneally, 2020). According to UNESCO (2018), since CSE has been developed to serve as an international standard of sexuality education, it positions rights-based discourses at the centre. However, Davies and Kenneally (2020) argue that in using rights-based language, which includes notions of autonomy, independence and individualism, there is a risk of silencing critical perspectives within CSE framed by ‘crip’, ‘mad’ and ‘queer’ theories. Further, by considering the interconnections of divergent sexuality embodiment, CSE policies will be able to move away from hetero-ableist logistics to become intersectional, accounting more fully for the experience of sexualities of people with disability. Given sexuality education is a crucial component of human development for all people, CSE needs to be reflective of all human beings (Jaramillo Ruiz, 2017).

CONCLUSION This chapter discussed a range of issues that women and girls with disability experience in relation to their sexual agency and justice. Women with disability are sexual beings and their right to access comprehensive and relatable sexuality education is stated within international and national instruments and legislation. However, this chapter demonstrates that in practice, these rights often yield to paternalistic and protectionist caring regimes, further reinforcing heteronormative ableist messaging. The insights from women with physical disability about their experiences of sexuality education show the pervasiveness of dis/ableist and heteronormative ideologies and attitudes in both traditional and contemporary sexuality education. They highlight how neoliberal and ableist discourses within sexuality education centre notions of independence, personal productivity and choice and control, and are mainly exclusionary concepts for women and girls with disability. Women and girls with disability continue to face desexualization and exclusion from both Australian and international sexuality education curricula, which marginalizes queer and disabled sexualities, identities and voices, as well as rejecting discourses of pleasure. The intersectional oppression and social injustice women and girls experience highlights the need for CSE to be not only accessible and relatable, but for human rights to be activated more meaningfully in practice. For intersectionality to be at the core of CSE policies, practices and standards, the lived experience of women and girls with disability would shape practice, form and function, broadening the approach of CSE to include women’s own priorities about diverse sexualities, desire and agency.

NOTE 1.

Start of endnote. Person-first language is used throughout the chapter, consistent with leading peak disability rights advocacy organizations within Australia. However, the authors recognize that language choices can be context specific, change over time and are deeply personal and political (People with Disability Australia, 2019). End of endnote.

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666  Research handbook on disability policy Shakespeare, T. & Richardson, S. (2018). The sexual politics of disability: Twenty years on. Scandinavian Journal of Disability Research, 20(1), 82–91. http://doi.org/10.16993/sjdr.25 ​ ​ ​ ​ ​ ​ Shannon, B. (2016). Comprehensive for who? Neoliberal directives in Australian ‘comprehensive’-sexuality education and the erasure of GLBTIQ identity. Sex Education, 16(6), 573–585. Shannon, B. & Smith, S.J. (2015). ‘A lot more to learn than where babies come from’: Controversy, language and agenda setting in the framing of school-based sexuality education curricula in Australia. Sex Education, 15(6), 641–654. Shildrick, M. (2009). Dangerous discourse of disability, subjectivity and sexuality. Palgrave Macmillan. Sik Ying Ho, P. (2006). The (Charmed) circle game: Reflections on sexual hierarchy through multiple sexual relationships. Sexualities, 9(5), 547–564. https://doi.org/10.1177/1363460706069966 ​ ​ ​ ​ ​ Tepper, M.S. (2000). Sexuality and disability: The missing discourse of pleasure. Sexuality & Disability, 18(4), 283–290. https://doi.org/10.1023/A:1005698311392 ​ ​ ​ ​ ​ ​ Thomas, C. (2006). Disability and gender: Reflections on theory and research. Scandinavian Journal of Disability Research, 8(2–3), 177–185. http://doi.org/10.1080/15017410600731368 ​ ​ ​ ​ ​ Thomas, C. (2007). Sociologies of disability, ‘impairment’, and chronic illness: Ideas in disability studies and medical sociology. Palgrave Macmillan. Treacy, A.C., Taylor, S.S. & Abernathy, T.V. (2018). Sexual health education for individuals with disabilities: A call to action. American Journal of Sexuality Education, 13(1), 65–93. https://doi.org/10 ​ ​ ​ ​ .1080/15546128.2017.1399492 ​ ​ ​ UNESCO. (2018). International technical guidance on sexuality education: An evidence-informed approach (revised edn). https://www.unaids.org/sites/default/files/media_asset/ITGSE_en.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ United Nations. (1993). Standard Rules on the Equalization of Opportunities for Persons with Disabilities. https://www.un.org/disabilities/documents/gadocs/standardrules.pdf ​ ​ ​ ​ ​ ​ ​ ​ United Nations. (2006). Convention on the Rights of Persons with Disabilities (UNCRPD). https://www ​ ​ .un.org/disabilities/documents/convention/convoptprot-e.pdf ​ ​ ​ ​ ​ ​ ​ United Nations Population Fund. (1995). Report of the International Conference on Population and Development. Cairo, 5–13 September 1994, Document A/Conf. 171/13, paragraph 7.2. https://www ​ ​ .un.org/development/desa/pd/sites/www.un.org.development.desa.pd/files/icpd_en.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Waling, A., Fisher, C., Ezer, P., Kerr, L., Bellamy, R. & Lucke, J. (2020). ‘Please teach students that sex is a healthy part of growing up’: Australian students’ desires for relationships and sexuality education. Sexuality Research and Social Policy. https://doi.org/10.1007/s13178-020-00516-z ​ ​ ​ ​ ​ ​ ​ ​ Waxman Fiduccia, B. (2000). Current issues in sexuality and the disability movement. Sexuality and Disability, 18(3), 167–174. http://dx.doi.org.ezproxy.uws.edu.au/10.1023/A:1026461630522 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ World Health Organization (WHO). (1975). Education and treatment in human sexuality: The training of health professionals (WHO Technical Report Series No. 572). https://apps.who.int/iris/bitstream/ ​ ​ ​ ​ ​ ​ handle/10665/38247/WHO_TRS_572.pdf?sequence=1 ​ ​ ​ ​ ​ ​ ​ ​ ​ World Health Organization (WHO). (2006). Defining sexual health: Report of a technical consultation on sexual health. https://www.who.int/reproductivehealth/publications/sexual_health/defining ​ ​ ​ ​ ​ ​ ​ ​ ​ _sexual_health.pdf?ua=1 ​ ​ ​ ​ ​ World Health Organization & World Bank. (2011). World report on disability. World Health Organization. https://www.who.int/disabilities/world_report/2011/en/ ​ ​ ​ ​ ​ ​ ​ ​

55. Narrative 16: In her lifetime Lee Tsourvakas

Content warning: this piece discusses violence and abuse of disabled women. If this is triggering to you, please do not read it. Abled people, please sit with your discomfort. Feminism and disability are not often terms that are used together, whether in the media or in conversations. Well-known Australian feminist forum ‘Destroying the Joint’ (DTJ) called for posts with the hashtag #BeingAWoman, but when disabled women posted their experiences, organisers began deleting comments and posts, claiming they were “repetitive, circular and off topic”. Describing disabled women’s experiences as “half-truths and distortions”, DTJ was called out for their behaviour, and apologised for their “comment moderation in this instance” (Ellis, 2015). This only resulted in a recognition that they “can always be more inclusive”. As women, we often talk about ‘the sisterhood’, how we need to support and up lift one another. But it’s stories like these that remind me that this ‘sisterhood’ is not always extended to disabled women. Disabled people are told by the media that we are, of course, inspiring, and break mindsets. That we must work through our limitations as there is something wrong with us. This wouldn’t be acceptable if it was targeted at a different group, like women. People wouldn’t say there was something wrong with women, or that they are automatically inspiring. Being a disabled woman can be hard for these reasons. It can also be hard because in our lifetime: 24.5% of us have experienced sexual violence or threats; 29.4% of us have experienced intimate partner violence or threats; 38.7% of us have experienced physical violence. This increases dramatically for those of us with ‘severe or profound’ disabilities, with 30.4% experiencing sexual violence or threats, 33.5% experiencing intimate partner violence or threats, and 44% experiencing physical violence, in our lifetime (Australian Institute of Health and Welfare, 2020). While non-disabled women also experience violence, which must be addressed, the lack of specific understanding of disabled women’s needs and the continued ableism expressed in ‘women’s spaces’ means our community continues to hurt. These statistics of abuse and violence are even higher for disabled women who have other intersecting identities. However, I can’t seem to find these statistics, probably because the world isn’t ready to see them. This is not good enough. For young disability advocates, this is what scares us. We’re scared for our community, our disability family. We’re scared for our disabled siblings in Australia. We’re even more scared for the ones who hold intersectional identities. We’re scared for the ones who will be born today and will face and have to fight these statistics. We don’t want them to be abused. I find myself asking, how can we make people aware of these statistics? Especially when organisations supporting women deny the experiences of disabled women because it is easier. 667

668  Research handbook on disability policy Hearing these statistics, and realising my community is more likely to experience violence is devastating. But, to be perfectly honest, I don’t know how we change these statistics. However, what I do know is that if a young disabled woman is abused, we must amplify her voice. We must listen to her. We must share her story in accessible ways. One woman can’t change the world in her lifetime. But the cause of feminism, all of us humans, must work with her to change the world. For her life depends on it.

REFERENCES Australian Institute of Health and Welfare (2020) People with disability in Australia. Canberra, AIHW. Ellis, K. (2015) Destroy the joint, sure, but feminism must include disability politics. The Conversation. Retrieved from https://theconversation.com/destroy-the-joint-sure-but-feminismmust-include-disability ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -politics-51119 ​

56. Pain management for palliative care patients with disabilities: revisiting morphine prescription policies in developing contexts Julieth Musengi and Martin Musengi

INTRODUCTION People with disabilities generally have increased healthcare needs and lower socio-economic status which particularly disadvantage them when free markets are emphasized in policy frameworks rather than the right to health. Any painful terminal illness requiring palliative care further compounds the situation and disempowers patients with disabilities. Thus, pain management is of paramount importance in the provision of palliative care because pain has a profound impact on one’s quality of life and potentially has physical, psychological, spiritual and social consequences if not addressed. It can lead to reduced mobility and a consequent loss of strength, compromise the immune system and interfere with a person’s ability to eat, concentrate, sleep or interact with others. In 2014 the World Health Assembly (WHA) passed the first-ever global resolution calling upon World Health Organization (WHO) member states to improve access to palliative care as a core component of health systems’ primary health and home-based care (WHA, 2014). The resolution’s intention to reduce barriers to palliative care has implications for pain management policies, especially for patients with disabilities in clinical environments characterized by high disease burden and patient ratios. This chapter discusses how restricting prescriptions for pain management to specialized professionals such as doctors results in the under-utilization of much needed drugs, unnecessary patient suffering, denial of an inalienable right to dignified healthcare and frustration of unauthorized health personnel who watch helplessly as terminally ill patients with disabilities live and die in avoidable pain. The chapter analyses the policy challenges and opportunities created by the WHA’s resolution as developing nations negotiate the existing statutory regulations that define the prescription of palliative care opioid derivatives such as morphine as dangerous drugs that are restricted to specialized yet unavailable medical personnel.

CASE EXAMPLE OF ZIMBABWE Having lobbied for over two years, on Tuesday 12 November 2019 palliative care stakeholders in Zimbabwe woke up to the long-awaited exciting news that palliative care trained nurses could now administer, prescribe and be in possession of morphine for palliative care use. This accomplishment had started during a routine national palliative care stakeholders’ meeting in 2016, where a senior WHO official presented on the WHA Resolution on Palliative Care (2014), in which the key aspects were unpacked. During the meeting participants were shown a series of short pediatric palliative care movies mostly from the developed world. In 669

670  Research handbook on disability policy the ensuing guided discussion, it was then observed that unlike most of Zimbabwe’s local palliative care patients, the children in the movies, many of whom were disabled, seemed to experience little or no pain at all and their families were psychologically well prepared for their prevailing situation. The Zimbabwe stakeholders then agreed that a palliative care advocacy group comprising of palliative care individuals and organizations was necessary to drive the national palliative care agenda. The advocacy group was immediately established and came up with a list of palliative care issues that they needed to address, using some prior related achievements as ‘low hanging fruits’. These included the National Palliative Care Policy (2014), the National Palliative Care Curriculum (2014), the National Palliative Care Training Manual (2014), and the then current National Health Strategy 2016–2020, which for the first time included palliative care. Among the participants were qualified and experienced palliative care nurse practitioners who expressed their frustration that in spite of their knowledge of pain management, they had no choice but to witness countless palliative care patients dying in pain. What compounded their frustration was the fact that the use of morphine for pain treatment was legal in Zimbabwe. The lack of access was universal as substantiated by findings from a three-country national morphine survey (APCA, 2015). The results showed underutilization of morphine in the three countries with various policy or legislative barriers, especially in Zimbabwe where only 10.1 kg instead of the expected 177 kg morphine (according to calculations based on the disease burden) had actually been used in 2013. The major cause was the overly restrictive controlled medicines statutory regulation, the Dangerous Drug Act (DDA), which limited prescription of morphine to medical doctors, whose ratio to the patients was incomparable, leading to a critical shortage of prescribers especially within rural settings, just like elsewhere in Africa. After agreeing that this was unacceptable and needed to be addressed promptly, the advocacy group engaged the Ministry of Health and Child Care and started raising awareness about the need to manage pain in palliative care. Further consultations were made with the nurses’ regulatory body, the Nurses Council of Zimbabwe (NCZ), the Medicines Control Authority of Zimbabwe (MCAZ) seeking authority for palliative care trained nurses to prescribe morphine for patients under palliative care. Eventually, statutory amendments were made to the Dangerous Drug Act by parliament. Consistently, over the years, in almost all discussion forums, the issue of palliative care patients with disabilities and how they would be catered for was being raised but never resolved. Unfortunately, up to now, for people with communication-related disabilities the tools for assessing the presence and severity of pain remained reliant on sight and hearing abilities of the patient. Therefore, the newly enacted statutory instrument and its accompanying policies did not fully cater for the rights of people with intellectual disability, and visual and hearing impairment, as the degree of their pain could not be easily ascertained because of their communication. Similarly, for people with other disabilities such as physical disabilities, the means-testing to determine eligibility for exemption from paying user-fees in hospitals still does not cover functional limitations caused by disability. This means that in general, benefits from the policy liberalization relating to morphine prescription for pain management remain rather restricted and the right of people with disabilities to dignified healthcare continues to be denied.

Pain management for palliative care patients with disabilities  671

BACKGROUND TO PALLIATIVE CARE For most people, ‘palliative care’ is not a term used in everyday language. There is much confusion about it, as palliative care is often mistakenly associated only with end-of-life care. While end-of-life is certainly a part of palliative care, it also covers care and support that is given to the patient and their family from the moment of diagnosis as part of comprehensive chronic care. The WHO regards palliative care as holistic care that is applicable from diagnosis (or beforehand) until death – and beyond, as bereavement support for the family members (WHO, 2021). Palliative care is holistic in that it has four main all-encompassing components, each of which extends beyond the patients to include their families and care providers. The components are: management of physical pain and symptoms; promotion of emotional and mental health; social and practical support; and spiritual care. Palliative care is unique in that it focuses on the needs of patients, their families and care providers, and is also adaptive as it can be provided across a range of settings and models including home-based care, facility-based care and day care. Thus, for the best outcomes, according to the WHA’s Resolution on Palliative Care (WHA, 2014), palliative care should be integrated into existing national health systems. The Oxford English Dictionary defines ‘to palliate’ as ‘to alleviate (disease) without necessarily curing it’. The ethos of palliative care is about maintaining and improving a patient’s quality of life throughout the course of a life-limiting illness without any form of discrimination. With effective management of physical pain and symptoms, and appropriate psychological support, people with such illnesses can live full and rich lives for far longer than they otherwise would. Simply put, palliative care is the kind of care anybody would want for themselves and the people they love, as it provides relief from unnecessary physical, psychological and spiritual pain caused by life-limiting illnesses throughout the illness trajectory. In fact, one of the benefits of this holistic approach is that it is born out of human value and dignity, right until one’s death, making it quite relevant for people with disability.

THE RIGHT TO PAIN MANAGEMENT According to the International Association for the Study of Pain (IASP, 2020), pain is described as an unpleasant sensory and emotional experience associated with potential or actual tissue damage. Physical pain is perhaps the most feared symptom, but not necessarily the most common one. It seldom occurs in isolation, as it is accompanied by other symptoms such as anxiety, nausea and vomiting. Pain is always a personal experience that is influenced to varying degrees by biological, psychological and social factors. This is why in palliative care circles, pain is what the patient says hurts. Therefore, a person’s report of an experience of pain should be respected. Clinicians therefore need to understand that they have the ethical responsibility to manage pain. Some of the early proponents of the view that physicians have an obligation to relieve pain and suffering include the Council on Ethical and Judicial Affairs, American Medical Association (AMA, 1992; https://​www​.ncbi​.nlm​.nih​.gov/​pmc/​articles/​ PMC6301399/​) and later on the WHA (2014) which resolved that ‘it is an ethical duty of health care professionals to alleviate pain and suffering’. In practical terms, this has to start with the need to believe the patient when they say that they are in pain. Historically, patients with chronic life-limiting illnesses have often been left in pain. This is due to various unjus-

672  Research handbook on disability policy tifiable reasons including restrictive prescription policies, disbelief, health providers’ fears of patients’ addiction (opiophobia), belief that pain is inevitable and normal in a sick person, and drug stock shortages. The situation gets worse where it concerns patients with disability (such as visual or hearing impairment) for whom communication with care providers may be a challenge. Having observed that many patients unjustifiably endured unrelieved pain, on the Global Day against Pain, 11 October 2004, the IASP and the European Pain Federation (EFIC) together with the WHO declared that pain relief should be a universal health right (AMA, 1992). Since then, there have been several international summits and declarations by palliative care and public health experts articulating pain management or palliative care as human rights. Examples include the International Pain Summit of the IASP (2011) Declaration of Montreal, which is a document developed by 130 countries during the first International Pain Summit on 3 September 2010, endorsed by the IASP and the International Pain Summit Steering Committee, which states that access to pain relief is a fundamental human right. There is also the Joint Declaration of and Statement of Commitment to Pain Management and Palliative Care as Human Rights (2008), and the 2004 Global Day Against Pain which is an IASP and EFIC initiative co-sponsored by the WHO held on 11 October 2004 in Geneva, Switzerland, to promote pain relief as a human right (INCB, 1999).

TRADITIONAL AFRICAN VALUES AND THE PALLIATIVE CARE ETHOS Traditionally in Africa, palliative care has been a taken-for-granted communal activity based on Ubuntu. Ubuntu is an African philosophy of life which has pre-colonial foundations. Mukuni and Tlou (2018) explain that the word ‘Ubuntu’ is derived from the African word ‘muntu’ which means human being and so Ubuntu means qualities of humanness that promote harmony among people. A fundamental belief of Ubuntu is ‘umuntu ngumuntu ngabantu’ (a person can only be a person through others) (Mbigi & Maree, 1995: 12). Edwards et al. (2004) explain that Ubuntu in essence means being honest, accommodative, sharing, saving life at all costs and respecting young and old. As this philosophy of life advocates embracing others through whom one sees oneself, it theoretically fosters the unconditional acceptance of people with disabilities as well. Ubuntu rests on the ethics of the shared collective humanity that is rooted in the African holistic worldview that emphasizes the interconnectedness and interrelatedness of everything and everyone. Ubuntu’s shared collective humanity is evident when government officials work collaboratively with private voluntary organizations and regulatory bodies. As Murove (2004) explains, Ubuntu encompasses spiritual interdependence and respect and responsibility towards everyone including their ancestors. Such respect would be compromised by the indignity of unaddressed severe pain in people with disabilities. In emphasizing interlinked relationships, Ubuntu promotes ethical care for all as it values overlaps, continuity and cross-over between communities (Makalela, 2019). These overlaps and cross-over therefore include people with disabilities who are viewed as part of the community. Ubuntu presents the African population with a model of social ethics that mobilizes against social injustice and moves towards restoring humanity and the upholding of individual life and wellbeing as a holistic reality (Berghs et al., 2016; Louw, 2006). It can be seen that Ubuntu therefore locates disability within the holistic and collective understanding of humanity,

Pain management for palliative care patients with disabilities  673 ensuring the dignity and rights of people with disabilities are acknowledged. Ubuntu is the foundation of many African cultures, including the Shona and Ndebele cultures of Zimbabwe. Ubuntu is essential in the African context because every society is built on a set of values and norms which form the basis for developing principles, protocols and ethical and cultural standards (Mkabela, 2018). According to Mkabela and Luthuli (1997), openness to Ubuntu is an ethical guide which nurtures a morally inclined discourse of human rights about common values and the attitudes that come to the fore. Culturally irrelevant human rights approaches are generally flawed as they do not integrate indigenous values, fail to provide human rights that are responsive to community perspectives and therefore create a gap between the conceptualization and practice of human rights by indigenous communities (Mkabela, 2018). Murithi (2007) argues that the current international human rights standards, beginning with the 1948 Universal Declaration of Human Rights, were not developed through a global broad‐based consultation of the different values from around the world. This means that since the 1948 Universal Declaration of Human Rights omits Ubuntu, as one of the rich traditions on the African continent founded on the notion of human dignity and ‘humanness’, this results in a ‘clash of civilizations’. At worst the declaration is a culturally irrelevant human rights approach. Murithi (2007) advocates for offsetting this irrelevance and clash through a ‘dialogue among civilizations’, in which there is an urgent need to articulate a supplementary universal declaration of human rights, duties and obligations based on values drawn from sidelined worldviews such as Ubuntu. The African values of Ubuntu, such as being accommodating, sharing, respect and saving of life, are aspects related to what Berne et al. (2018) call ‘disability justice’ which is also the essence of palliative care. Palliative care grounded on Ubuntu therefore involves keeping a vigil and often administering herbal remedies and other alternatives to pharmacotherapy, such as aromatherapy, massaging and diversionary therapy for patients with life-threatening conditions. The concept of ‘Total Pain’ in palliative care involves not only managing physical pain but also emotional, social and spiritual pain. When faced with a life-threatening illness, existential issues relating to spirituality become a priority for many people. Palliative care respects the patient’s spirituality, and therefore offers support to individuals and their families, as they begin to question the meaning of life, and raise issues relating to their beliefs, values and cultural practices. Patients under palliative care are given the space and freedom to perform their religious or cultural rituals, whatever their belief system. Historically, care for seriously ill patients normally commenced with a traditional leader such as a chief or other village-head announcing a ‘bembera’. The bembera is an untargeted public call on village witches to quietly and quickly administer an antidote. Failure to respond to the call would be apparent in the patient not recovering and this would result in a second call for all to attend a ‘gumbwa’ ceremony at which the witch could be identified and ordered to administer an antidote or traditional remedy. With the advent of colonization in 1890 in Zimbabwe, such practices were banned under Roman-Dutch law. As a way to circumvent Zimbabwe’s Witchcraft Suppression Act (1899), which criminalized the identification of individuals as witches, all villagers were then requested to take turns to provide porridge to the patient in the hope that the witch would quietly administer an antidote. All this time, villagers took turns to be constantly physically present at the patient’s bedside, offering psychological and material support. This is consistent with end-of-life care in palliative care, where family members are encouraged to as much as possible provide the patient company and moral support in the face of impending death. If the illness was terminal and culminated in death, a similarly communal funeral would

674  Research handbook on disability policy then be held. In most communities, the palliative care providers are volunteers, often mature women trained in basic palliative care skills, whose role does not end with the death of the patient, as it extends to providing emotional support to bereaved family members. Therefore, it is quite normal for a palliative care practitioner to attend the funeral of their deceased patient. All villagers would attend the funeral and provide communal support in the form of prayer vigils, sharing of funeral expenses, grave-digging and related burial labour. Emphasis is on the responsibilities of community members to work in solidarity and ensure dignified palliative care and, where necessary, eventually burial. In this way the rights of all, disabled and non-disabled, are ensured. Traditional palliative care for patients with life-threatening illnesses is similar in many respects to the traditional responses to disability in many African cultures.

RESPONSES TO DISABILITY IN AFRICA The advent of colonialism sidelined Ubuntu and negatively affected perceptions of traditional African cultures. Therefore, in contemporary times many Africans experience shame and blame if there is a person with disability in their family (Chidyausiku, 2000; Mpofu et al., 2007). However, it is evident that even though this area is under-researched, the negative attitudes towards disability are not universal across Africa. Beliefs regarding different categories of disability in Africa vary based on cultural groups. For example, a study in Tanzania found that people with disabilities in this area were not as marginalized as was found in other regions of Africa (Kisanji, 1995), and this is attributed to cultural beliefs within Tanzania which emphasize normalization and community integration. Such community integration is evident in the Zimbabwean proverb Seka hurema wafa (laugh at disability after you are dead, which implies that one should never laugh at disability). Devlieger (1999) stated that this proverb reflects the existential insecurity of laughing at someone with disability as anyone could become disabled one day. Local proverbs usually capture narratives about disability as Kisanji (1995) explains that proverbs generalize a community’s experience and Devlieger (1999) states they are containers of meaning on disability. Cultural beliefs on disability may even vary within countries as different cultural groups can have varying beliefs about disability within national borders. However, Devlieger (1999) argued that there are some commonalities among the myths about disability in Africa. This includes an underlying cultural tendency to accept the functional limitations associated with some disabilities, rather than to focus on compensation or rehabilitation. Another Zimbabwean proverb Bofu harimemi hunza (literally meaning a blind person does not inspect a game pit) illustrates a way of thinking that accepts disabled people’s physical limitations. Such proverbs are widely used in the socialization of African community members and may therefore reflect some of the social input that palliative caregivers may internalize about what is normal concerning people with disabilities. The increasing awareness of the importance of understanding traditional beliefs and practices regarding disability, along with the recognition that there are heterogeneous beliefs within Africa about disability, calls for increased knowledge about these beliefs. This is necessary not only for increasing cultural understanding, but perhaps more importantly for developing appropriate programmes and supports, as well as for developing and implementing appropriate policies.

Pain management for palliative care patients with disabilities  675 It is evident that not all who practise African culture, especially its Ubuntu philosophy, hold negative attitudes towards people with disabilities. Positive attitudes are evident in myths and proverbs that are a mainstay in the socialization of some Africans. According to Nyangweso (2021) one etiological myth in Africa presents an elaborate description of the origin of disability. According to this myth, the Supreme God, Olodumare, the creator of the universe, sent his sons Obatala and Oduduwa down to earth to assist with the creation of humans. Obatala was tasked to form human bodies after which he would pass them on so that the breath of life could be blown into the clay. Obatala, however, loved to drink palm wine, became intoxicated, and because of his drunken state he would sometimes fashion people with impairments and deformities. As the myth explains, he created disabled people when he was drunk. Repentant, he forsook alcohol and became the patron of those born with disabilities. In memory of Obatala’s drunkenness, worshippers are forbidden to drink palm wine and afflicted people are considered as sacred and special to the God. Individuals with disabilities are often given positions of importance in Obatala’s shrines. It is for this reason that people who are congenitally disabled are called people of the God Obatala. According to Nyangweso (2021), although Obatala is depicted as a flawed deity, unreliable and a drunkard whose intoxication brought imperfection to humanity, to interpret this mythology in a simplistic manner is to ignore the deeper meaning attributed to the narrative in African communities. While this myth explains the origin of disability, its purpose alludes to the reality of imperfection in this world and how imperfections are sometimes expressed in disabilities. The moral teaching in the narrative is about the acceptance of imperfections since God is on the side of all even those perceived to be imperfect (De la Torre, 2004). In similar fashion, an African proverb Chirema ndochine zano, chinotamba chakasendama kumadziro (literally meaning a deformed person is clever, he supports himself against a wall when dancing) demonstrates that people with physical disabilities are clever at finding solutions for activities that would seem difficult or impossible. Devlieger (1999) stated that this proverb shows that people with disabilities can have positive experiences, and that they also have a drive for survival. This and other similar proverbs are widely used in the socialization of community members and may therefore reflect some of the social input that is internalized about what is normal concerning people with disabilities. Socialization has not remained static as Africa has been influenced by modernization and so traditional perceptions about disability and palliative care might not be as rigid or clear-cut in modern African societies. African traditions have undergone changes like all other societies as Africans have become exposed to non-traditional ways of life as a result of urbanization. In some cases modernization has resulted in a movement away from purely Ubuntu-grounded responses to disability. However, as Super and Harkness (1986) observed, not all sub-systems of a culture are affected by change. Many traditional perceptions of disability could still affect the way in which disability is perceived. Similarly pain management may still have traditional influences but has had rather rapid shifts in recent times especially in light of the coronavirus disease (COVID-19) pandemic. Since the first wave of the COVID-19 pandemic, there was an urgent and desperate revival of some ‘forgotten’ traditional remedies such as the inhalation therapy with the Zumbani herb, otherwise known in Shona as ‘kunatira Zumbani’ previously used for colds and flu. For those with no access to Zumbani, eucalyptus oil proved to be a good enough alternative. Though still subject to rigorous scientific tests, anecdotal evidence in many households abounds that these traditional remedies really work for relieving COVID-19 symptoms including pain.

676  Research handbook on disability policy According to the WHO (2021) people with disabilities are disproportionately affected by the COVID-19 pandemic. Radbruch et al. (2020: 1467) observed: Covid 19 has brought a tsunami of suffering for low and middle income countries that are likely to have a high disease burden because they have weak health-care systems, lack of access to clean water and disinfectants, poor outbreak preparedness, severe shortages in personal protective equipment (PPE) and medical technology, challenges in enforcing physical distancing regulations, and reliance on informal employment.

The implication is that patients with disabilities are prone to be more vulnerable in these settings. Radbruch et al. (2020) point out that such patients do not utilize the scarce intensive care resources or hospital beds, and instead suffer and pass away at home under the care of relatives who lack personal protective equipment, access to pertinent information, training, or palliative care resources. Radbruch et al. (2020:1468) go on to argue: ‘… in this situation knowledge of palliative care and improving access to essential medicines, particularly opioids for the relief of breathlessness and pain, could alleviate the situation’. According to Radbruch et al. (2020), the implementation of triage for clinical decision-making, including who will receive ventilator support, is likely to negate person-centred care in favour of utilitarian thinking, especially for vulnerable groups like patients with disabilities. This negative shift has been exacerbated by neo-liberalism. Neo-liberalism promotes the privatization of public resources and functions, deregulation of markets and liberalization of trade (Harvey, 2005). According to Mladenov (2015), neo-liberalism insists on expanding the market logic and principles. In the post-colonial African welfare state, the expansion of market logic influenced social policy curtailment of social rights for people with disabilities by minimizing universal benefits and services, tightening of eligibility criteria and expansion of means-testing. For example, in hospitals patients with disabilities who have any means of earning an income may not be allowed free access to healthcare including morphine prescription. This is particularly true for many low-to-middle-income countries where means-testing is being done for the first time with very limited information relating to the criteria for user-fee exemptions (Meng et al., 2010). In this regard social policy curtailment for patients with disabilities is embedded within neo-liberalism. Retrenching the welfare dimension of the Zimbabwe state in this manner is detrimental to people with disabilities, 68 per cent of whom are impeded from maintaining significant economic activity (National Health Strategy, 2021). The role of the state becomes limited to the creation and preservation of an institutional framework appropriate for free markets and competition, with negative effects on patients with disabilities. Neo-liberalism has fostered the principles and practices of welfare-to-work or ‘workfare’ in many southern African governments’ social policies. In workfare programmes, receiving benefits is made conditional on participation in paid work. For example, in Zimbabwe there are programmes called ‘food-for-work’ where relief aid of various kinds is availed on the condition that one participates in work. Workfare programmes are usually characterized by an emphasis on personal responsibility and economic self-sufficiency, although many see through this and view as their main motivation the reduction of welfare spending including for people with disabilities. Such neo-liberalism will therefore generally increase the stigmatization of disability benefits. Grover and Soldatic (2013: 219) argue that ‘negative attitudes towards social assistance involve the stigmatization of welfare by incorporating the notion of “welfare dependency” in social policy thinking’. In this way, neo-liberalization of the nation

Pain management for palliative care patients with disabilities  677 state has resulted in the re-positionality of a particular class of disabled people as being surplus to the reordering of the national economic sphere, denying many disabled people the right to freedom, collective organization and human flourishing (Soldatic, 2018). Charity and medical discourses usually dominate where human rights approaches are denied in this way. Looking generally on the southern African landscape, Tesemma (2014) presents dominant legal-economic discourses of disability cutting across both charity and medical models. Within such discourses, people with disabilities are depicted as unproductive and as dependants of the welfare system, and by extension as dependants of non-disabled taxpayers or non-disabled benefactors. This perceived dependence is fuelled by the vicious nexus between poverty and disability where poverty triggers disability and disability in turn leads to further impoverishment. In the case study opening this chapter, disabled patients requiring the use of morphine are not explicitly singled out as many of them are included among poor patients requiring free services. In any case, many of them would be in home-based care settings supposedly in the safety and comfort of their own families. However, the reality for many local community settings is that they are under-resourced. This means that even though the opening case study has shown that nurses trained in palliative care are now authorized to administer morphine, many may not afford the services of the palliative care nurses and so will continue to suffer pain needlessly. In southern Africa people with disabilities have been particularly disadvantaged by neo-liberal reforms whose emphasis is on equal competition rather than equitable participation. For example, according to Sakellariou and Rotarou (2017) people with disabilities have increased healthcare needs and lower socio-economic status which particularly disadvantages them in a context where there is emphasis on a free market rather than the right to health. In this context, the support received by disabled people in southern Africa is largely insufficient. Benefit levels are extremely low, the enforcement of legislation is often slack or lacking altogether, and the monitoring and control of policies are also very weak. Iriarte et al. (2016) assert that securing state resources for the implementation of human rights instruments has become increasingly difficult as ‘austerity’ has become a guide word in policy-making in many countries.

DISABILITY IN ZIMBABWE Despite austerity measures based on neo-liberalism, Zimbabwe has been referred to as one of the most disability-accessible countries in Africa (Devlieger, 1998). Mpofu and Harley (2002) explained that the country had greater disability-friendly public transportation policies, disability legislation and vocational training and employment opportunities for people with disabilities than many other African countries. People with disabilities were entitled to free public transport and a government disability allowance. Ordinary schools enrolling learners with disabilities were paid a higher grant for each disabled child they enrolled and if the number of students with disabilities reached seven for students with visual or hearing impairment, the government deployed a teacher with special needs education training to assist with the teaching (Mpofu & Harley, 2002). In principle the grant was meant to cover the increased costs associated with special needs but in practice this may be used for costs that have nothing to do with the learner with special educational needs. Zimbabwe’s Disabled Persons Act (1996) was intended to enhance the educational, social and occupational interests of Zimbabweans with

678  Research handbook on disability policy disabilities. The legislation mandated a 15-member National Disability Board, 10 of whom represented organizations of people with disabilities. The spread of disabilities represented on the Board and whether there had to be any disabled people on the Board were aspects not specified by the law. The Board advises government on issues relating to people with disabilities and so far seems to have had an impact on directing disability policy and legislation. Zimbabwe’s prominent regional standing in disability issues was also attested by the fact that the country had 56 organizations for and of people with disabilities (Chimedza, 2000). These included disability-specific organizations such as the Epilepsy Support Foundation of Zimbabwe; organizations of people with disabilities in general, such as the National Council for Disabled Persons of Zimbabwe, and support organizations such as the Zimbabwe Parents of Handicapped Children Association (Mpofu & Harley, 2002). Barcham (1998) said that the Deaf community in Zimbabwe had been formally organized as the Association of the Deaf since 1987. The organization promoted the use of Zimbabwean Sign Language in schools and on television and also lobbied government about their preference for special schools for the Deaf rather than inclusion in ordinary schools. The rise of these disability rights movements seems to have been directly instigated by the introduction of formal education for people with disabilities in the country.

HOME-BASED CARE FOR PEOPLE WITH DISABILITIES Home-based care for people with disabilities is based on principles of disability justice and Ubuntu. The recognition of the wholeness of disabled people (Berne et al., 2018) is a key principle of disability justice that has implications for pain management. Just like their non-disabled peers, each person with disability has an internal experience composed of their own thoughts, sensations, emotions, fantasies, perceptions and idiosyncrasies. When caregivers manage pain for patients with disabilities, there is a need to recognize these internal experiences and value the individual as he or she is, for who they are, and understand that they have inherent worth outside of capitalist notions of productivity. Teachings of disabled lives and bodies need to be valued as embodied experience is a critical guide and reference for justice through pain management. The thinking is based on anti-capitalist politics which resists conforming body and mind to a normative level of production as human worth should never be dependent on what and how much a person can produce. The disabled patient as a whole human being should remain at the centre of clinical decision-making. Standard clinical decision-making does not seem to recognize that we are interdependent in attempting to meet each other’s needs in communities. In home-based care settings, interdependence does not need to be interpreted as charity for the helpless but as solidarity for those requiring assistance at particular times of need. Access needs of patients with disabilities are not shameful as all people have various capacities which function differently in various environments. Caregivers therefore need to commit to solidarity, including cross-disability solidarity in which the insights and participation of all community members are valued, honoured and respected. Berne et al. (2018) argue that such commitment breaks down ableist, patriarchal, racist or classed isolation between people with impairments, sick or chronically ill people and psychosocial disability survivors. Therefore, since neither pain nor disability are shameful, pain management policies for patients with disabilities need to be grounded on such principles as caregivers strive to meet

Pain management for palliative care patients with disabilities  679 their needs in light of increased healthcare needs and lower socio-economic status (Sakellariou & Rotarou, 2017). It should be clear that in well-resourced contexts, the needs of such patients may well be optimally met in home-based care settings. In addition to personalized care, there would be a team of professionals available who can administer pain management drugs. However, in under-resourced contexts, restricting prescriptions of pain management drugs only to highly specialized professionals, such as specially trained palliative care nurses who are not readily available at community level, could be counterproductive. Specially trained palliative care nurses will usually administer morphine in institutions such as hospitals and special care homes rather than in regular homes in local communities. Very useful drugs would remain underutilized while patients with disabilities who need relief but are not in hospitals would continue to suffer unnecessarily. In this context, this would be tantamount to denying patients with disabilities the right to dignified healthcare, in contravention of the WHA’s resolution to improve access to palliative care as a core component of health systems’ primary healthcare (WHA, 2014). All key aspects of the WHA’s resolution need to be taken into consideration, where increasing nursing personnel trained in palliative care is made a priority for supporting the prescription policy changes in order to make pain management medicines accessible to all in need. Pain management policies for patients with disabilities in environments characterized by high disease burden and patient ratios need to have minimal barriers to palliative care in order to improve access.

CONCLUSION This chapter discussed how restricting prescriptions for pain management to a specialized yet unavailable group of medical personnel results in the underutilization of much needed drugs, unnecessary patient suffering and denial of an inalienable right to dignified healthcare. The case example illustrated how regulatory changes stemmed from the frustration of unauthorized health personnel who had watched helplessly as terminally ill patients including those with disabilities lived and died in avoidable pain. It was highlighted that statutory regulations that restrict the prescription of opioid derivatives to unavailable medical personnel could be collectively negotiated in order to come up with more liberal policies that take advantage of the opportunities created by the WHA’s resolution. Collective policy negotiations were illustrated as involving multiple state and non-state actors in order to result in a liberal policy shift. The case example synthesized how the liberal policy shift would be inadequate without mainstreaming people with disabilities in advocating for the development of pain management policy guidelines that align with the WHA’s resolution to ensure accessible palliative care. It was highlighted that Ubuntu-grounded responses to disability in Africa appeared to be a missing link in the development of liberal health policies to alleviate pain and suffering for patients with disabilities. It was argued that to counter austerity measures which threatened to reverse Zimbabwe’s prominent standing in disability issues, Ubuntu could be used to inform and fortify policy-making. Ubuntu’s strong foundation in human dignity and humanness could be the basis for a culturally relevant human rights approach that may also be emulated by other civilizations in resource-constrained contexts that depend on home-based care for many patients with disabilities across the world. At the very least a dialogue among civilizations

680  Research handbook on disability policy would incorporate in policy-making the human rights, duties and obligations based on values drawn from sidelined worldviews such as Ubuntu.

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PART IV ECONOMIC INCLUSION Karen R. Fisher and Bella Bauer

Part IV is about the economics of inclusion, which is also the title of Daniel Mont’s lead chapter for the part. Mont begins the part by explaining the value of using an economic lens to understand policies that affect the experiences of people with disabilities. He points out that taking a human rights perspective or values base is vital to both identify and address the inequalities associated with disability. This section opens with a narrative by Sionainn Jans which steps through the effects of current policy in her home country of Australia and the way this constrains her future capacity to enter the employment market in a way that will lead to full economic inclusion. Readers in many countries will relate to the experiences Sionainn describes. This economics part has three interconnected themes about education, employment and income support. The chapters offer overlapping insights and thematic challenges that mirror a life course, and emphasise the links between education, access, participation and economic independence. Pritchard begins this group of chapters by challenging the hierarchy of disability, which impinges on people’s access to their human rights and affects their economic and other participation. Dickinson et al. explore the support processes provided for young people with disability transitioning out of schooling, an integral period for economic participation and education. They argue that in the COVID-19 pandemic, schools did not support such students effectively. Olney and Devine continue these themes by examining policies targeted at incorporating people with disabilities into the workforce from prior to the pandemic to its early stages in order to ask important questions about the outcomes of the programmes for future policymaking. Their chapter touches on themes of equity, employment policy and future opportunities for persons with disabilities in the post-pandemic economy. Damian Mellifont’s narrative progresses this argument and provides readers with an opportunity to reflect on the personal impacts of policy. His poem articulates the fraught process of workplace disclosure of disability, and questions ableist cultures that give rise to the title of the poem, ‘sanist wonderland’. Chou et al. turn to a critical economics question about changes to expectations about the employment opportunities of people with disability. They analyse the impact of the CRPD in 682

Part IV: Economic inclusion  683 Japan, Taiwan and South Korea, by examining the facilitators and barriers to the changing characteristics of sheltered workshop policies for people with disabilities in the framework of international human rights. Samosh et al. continue with the theme of employment, but from the perspective of the person. They take the novel frame of analysis to examine how disability can be an enabling and positive factor for career success. They argue it can benefit both the person and organisation, with implications for policies that promote greater inclusive practices. Sadiel Albakri’s narrative demonstrates the focus and determination that many people bring to their search for employment. The third theme is about other forms of economic assistance, including microfinance, income support for people not in paid employment and opportunities from assistive technology. Wechuli et al. note the importance of informal employment in the Global South and analyse the impact of microfinance. The authors challenge the neoliberal individualisation of poverty and financial stability in these schemes and question the benefits to society. Smith-Carrier argues that specialised disability income support is not as effective as implementing a universal design policy such as a UBI, to address income security issues. Joe Foster’s narrative about a universal basic income brings a personal lens to this issue. Holloway et al. explore the opportunities and challenges from assistive technology. They argue that assistive technology is a human right and the convergence of disability policy and innovation can be used to achieve widespread availability of these technologies.

57. Narrative 17: Supported or stuck? Disability employment policy for young people Sionainn Jans

The minimum wage in Australia is $20.33 an hour, better than most countries and allows our country to live with some sense of financial security. For the most part, this is a livable wage and a legal requirement of businesses all over Australia to provide this to their workers who are over the age of 18. Unless you’re disabled. I am currently looking to move out of the rental I share with my mother in rural Victoria and into a Regional Victorian city to live closer to my boyfriend in a rental. I currently earn $519 a week after tax as a trainee, but am looking to leave due to a toxic workplace environment to seek full-time employment in the city I’m moving to. After struggling for years in mainstream employment as a young woman with Autism Spectrum Disorder, Tourette’s Syndrome, and numerous types of anxiety, I thought perhaps supported disability employment could be a great place for me to start in this new city. It would help me build skills, meet people like me, and, most of all, gain a wage in a supported environment where I wouldn’t be made to feel like a pariah all because of my physical tics and social troubles. When looking into supported employment, a scheme through the government and NDIS, my support worker informed me I would be paid $2 an hour for the first three months of employment. Two dollars an hour. When I voiced my concern she was quick to say that I would keep Centrelink’s Disability Support Pension on top of this if I were to go into supported employment. Let’s break this down. I am a 20-year-old woman, independent, so my maximum fortnightly payment on Centrelink’s Disability Support Pension would be $644. If I’m working a 40-hour week on $2 an hour that’s an extra $160 per fortnight, so all together $804 a fortnight compared to a neurotypical full-time worker’s $1,545.20 a fortnight. The average price of a rental house in Australia is $471 a week, and $429 a week for a unit. Even if I managed to get something lower for $300, what agent is going to rent a property to someone who will have $100 left after each week’s rent? That won’t cover utilities, fuel, and groceries, let alone anything of pleasure. And that is what this comes down to. Disabled people aren’t seen as deserving extra, as deserving to have the money to buy items they want or to go out for dinner or have a subscription to a streaming service, things others take for granted. Disabled people are expected to take the bare minimum in order to live, sometimes not even the bare minimum, and be grateful for it. While this generation of disabled people can be seen as the most fortunate in terms of our quality of life, such as access to healthcare, certain financial assistance, and more bodily autonomy, we are still treated as lesser citizens in our employment, our education, our housing. 684

Narrative 17: Supported or stuck?  685 Disabled people are more likely to be homeless, more likely to face substance abuse, more likely to face unemployment and domestic violence and discrimination in medical treatment. How are we supposed to get ahead when policies like $2 an hour are purposely designed to keep us behind, financially insecure, and in poverty. Disabled people face the most amount of financial insecurity, homelessness, and poverty. Instead of working towards eliminating that we have made it legal to pay a disabled person literal slave wages for hard labour jobs including gardening, warehouse packing, packaging, and commercial cleaning. This policy has affected my life as a young disabled person because I know I can never go into supported employment with any hope of survival or gaining financial freedom and security. Instead I must stay in unsupportive mainstream employment and let my mental health suffer and deteriorate all for a basic income as I try and make my way as a young adult moving out of home for the first time. How are disabled people meant to gain any sense of financial security, housing, or independence when we are paid the wage of a child’s pocket money for the same amount of work a neurotypical, able-bodied person would be doing? People are so quick to call disabled people on Centrelink ‘dole bludgers’ or some other horrible name for not being employed, but would you work for $2 an hour? Not only is it impossible to maintain any kind of financial security on that wage, it is nothing but plain disrespectful as is saying that a disabled person doing the exact same warehouse job in supported employment that a neurotypical, able-bodied person is doing in a corporate warehouse is worth $20 less because they have a disability. We have policies and legislations in place in Australia that say you can’t discriminate against someone based on their disability status. What is $2 an hour, if not discrimination? What is denying someone the chance to get their own housing, if not discrimination? And what is denying someone the human right to financial freedom and security, if not discrimination? I would love to see policies changed where it is illegal to pay someone a lower wage based on their disability, and for all work to be viewed as valuable – because it is.

58. Economics of inclusion Daniel Mont

Economics is often at the heart of promoting and crafting inclusive policies. Many of the indicators used to monitor and evaluate policies are rooted in economics, whether they focus on outcomes like employment, earnings, and poverty, or on efficiency and the return to investment. An oft-cited definition of economics is that it “is the science which studies human behavior as a relationship between given ends and scarce means which have alternative uses” (Robbins, 2007). While some people apply this broadly as a way of studying any decision making – think of Levitt and Dubner’s (2014) popular book and podcast Freakonomics – it is most apt in studying the way that we produce and consume goods and services, especially those decisions that involve whether and how to participate in markets. Of course, all markets exist in a political and cultural context, so what people bring to the market is the function of past relationships and power structures. Economic outcomes are not simply the function of market forces, but how the market is socially, legally, and institutionally constructed. The fundamental contention of economics is that we cannot do whatever we want whenever we want to because our resources and our capabilities are limited, and so we must make choices. These choices involve tradeoffs. Economic theory cannot set priorities, but it provides a powerful, often used framework for analyzing the tradeoffs associated with trying to achieve them. The goal is to optimize some objective within our budget constraints. For firms, that could be profits; for individuals it could be income or even happiness. Whether our goal is to maximize income or wealth, or accomplish things like reducing violence and discrimination, we are still faced with limited budgets. Those with power over how issues are framed in economic terms often have considerable influence on how policies are developed and carried out and how those budgets are spent. This section of the book explores the economic implications of inclusion, but always keeping in mind the human rights framework. Economic principles can offer guidance for developing, implementing, monitoring, and evaluating policies. Mankiw (2014) suggests these principles include: 1. 2. 3. 4. 5. 6. 7. 8.

People face tradeoffs The cost of something is what you give up to get it Rational people think at the margin People respond to incentives Trade can make everyone better off Markets are usually a good way to organize economic activity Governments can sometimes improve market outcomes A country’s standard of living depends on its ability to produce goods and services.

However, when divorced from a human rights perspective these principles can lead to unintended consequences that undermine the progression to a fully inclusive society. Economics often pushes us to focus on particular, quantitative indicators, and often within 686

Economics of inclusion  687 a budgetary cycle, which can intentionally or unintentionally direct policy development and implementation. It is well established that people with disabilities are less likely to be employed. For example, in the United States, among those aged 18 to 64, only 37 percent of people with a disability were employed compared to 77.2 percent of people without disabilities (Institute on Disability/UCED, 2018). Interestingly, disability employment gaps can be lower in poorer countries where unemployment rates are higher for everyone and people must do any kind of work because of weak safety nets. This contributes to the fact that people with disabilities in low-income countries are more often self-employed (UNESCAP, 2015). For example, in Indonesia more than 63 percent of people with mild disabilities who are working are self-employed, compared to 34 percent of those without disabilities (Adioetomo et al., 2014). Even with the higher rate of self-employment, in 12 of 15 developing countries studied there was a gap in employment, nine of them statistically significant (Mizunoya & Mitra, 2013). There is an additional downward pressure on their earnings, even if employed, because of the barriers to education for people whose onset of disability occurred during childhood (Mizunoya et al., 2018). Overall, some estimates show that the lost productivity from lower employment and lower wages can decrease GDP from about two to seven percent, which is very significant (Buckup, 2020). In addition, disabilities impact family members who must often provide support needs because of the lack of accessible services and environments (WHO & World Bank, 2011; OECD, 2003, 2009; Palmer et al., 2015). The lower rates of employment and earnings contribute to poverty, the most cited economic impact that disability can have on families. Globally, data generally show that disability is linked to higher rates of poverty (Banks et al., 2017). But most of these studies rely on income or consumption-based measures of poverty which understate the relationship between poverty and disability for a variety of reasons. A poverty line supposedly represents some minimum standard of well-being when basic necessities like food, shelter, and clothing are met. But the marginalization of people – especially people with disabilities – is multifaceted. A person can be living in a household above a poverty line and still lack access to employment, education, healthcare, and community participation. This is especially true because poverty is usually measured at the household level so the degree of well-being and participation of two people in the same household can be very different. Since people with disabilities face barriers that other people don’t face – even possible discrimination within their own families (Skjoldhorne , 2019) – living in a “non-poor” household does not ensure the minimum quality of life the poverty line supposedly represents. Multi-dimensional measures of poverty try to account for this by including not only income and assets, but other facets of exclusion (Alkire et al., 2018). For people with disabilities, researchers have sometimes even expanded the typical deprivations in multi-dimensional poverty indices – things like education, employment, living conditions, access to clean water and healthcare, etc. – to include measures of social inclusion like the ability to be safe, make friends, and participate in community events (Trani et al., 2018). Another study included deprivations specific to people with disabilities, such as whether adapted education was available, whether the person experienced discrimination, was able to obtain a disability certificate, or did not have access to disability-related healthcare (Clausen & Barrantes, 2020). When these measures of poverty are used the poverty gap between people with and without disabilities is larger (Mitra et al., 2013; Pinilla-Roncancio, 2018).

688  Research handbook on disability policy However, this does not account for the full impact of disability on poverty. People with disabilities have extra costs of living that if not accounted for will lead to an understatement of the true disability poverty gap (Mitra et al., 2017). To maintain the same standard of living as a person without a disability, a person with a disability often must spend more both on disability-specific items, such as assistive devices and personal assistance, and on general items for which they often have a higher need, such as medical care and transportation. Studies estimating these costs show that they can vary widely in nature and scale and have large implications for how social protection systems should be designed (Hanass-Hancock et al., 2017). Moreover, these extra costs can increase when people try to participate, for example when going to work (İpek, 2019). Leaving one’s home and venturing out into a world with barriers to participation can require more expenditures in order to overcome those barriers. Inclusive policies are needed to address gaps in poverty and participation in society, and to ensure that all people can enjoy their full human rights. This, of course, has budgetary implications, both in terms of the costs associated with implementing policies and programs and the benefits they may produce. Policymakers tend to concentrate on the costs of inclusion – that is the costs needed to remove barriers to participation. Human rights advocates flip this around and stress the costs of exclusion. Not taking action also incurs costs, and those costs are borne disproportionally by people with disabilities. Weighing what policy direction to take inevitably leads to the demand for cost–benefit analyses. Governments and international agencies want evidence for the “business case” for inclusive development. This way of thinking about policy can be at odds with a human rights approach for a variety of reasons. First, how does one monetize things like dignity and sovereignty? What is the value of being able to decide for yourself where you want to live? How much money would you spend to know that you can use a restroom wherever you are going, or be considered a person on equal terms with everyone else? Clearly these are things of great value that are not included in GDP or other economic measures. Second, how does a cost–benefit calculation square with universal human rights? Around the world it has been accepted that all children have a right to an education. That is embodied in general in the Convention on the Rights of the Child, and for children with disabilities in particular in the Convention on the Rights of Persons with Disabilities. And education is not simply sitting in a classroom, but acquiring the necessary social, civil, and academic skills to be a full member of society. How, then, can movements toward inclusion be halted because they entail costs? Are other basic rights for sale, as well? Practical challenges exist with cost–benefit analyses, as well, in addition to the problem of monetizing more intangible benefits. Following on the example of education, the economic costs of education are incurred in the short term, but the benefits occur over a lifetime. Political terms are usually short, which poses the question of whether those who are in power only in the short term are willing to bear those costs? This situation is obviously not unique to inclusive policies, but it does work against investment spending, and much spending on inclusion, be it on education systems or infrastructure, is investment spending. A more subtle, but also important, issue is the time period over which those long-term benefits are calculated. The economic returns to an education are basically the increased earnings one receives over a lifetime. When conducting an economic study, the earnings of people with and without an education are compared, the assumption being that if we educate additional children, they will grow up to receive the same earnings premium currently experienced by more educated people. This will increase their income, the country’s productivity, and the

Economics of inclusion  689 tax revenues collected. Those estimates, though, are based on the current earnings premium experienced in today’s labor market. That labor market currently has many barriers lowering the employability and earning power of people with disabilities. The economic benefits of inclusive education are dependent on the inclusivity of the labor market. In making long-term projections of the economic benefits of disability-inclusive education, then, how can we incorporate the possible impact of employment reforms designed to open labor markets up to people with disabilities? If we do not try to incorporate them, then we will be underestimating the impact of an education that children with a disability receive on their earning power as adults over the course of their lifetime. Related to this, what if the budgetary costs of a policy are incurred by one ministry, say the ministry of education or labor, but the budgetary savings are enjoyed by a different ministry, say the ministry of social affairs? Is the cost–benefit analysis done within a sector or across all sectors? For these reasons, a cost-effectiveness approach might be more appropriate. That is, accept that inclusion is a right and must be addressed. Naturally the cost and complexity of achieving full inclusion is not something that can be done overnight. The Convention on the Rights of Persons with Disabilities recognizes that it must be done in a progressive fashion consistent with available resources. That is, policies and programs should be instituted in the most efficient way possible. Cost–benefit analysis leads to action when the monetary return is bigger than the next best remunerative investment. Cost-efficiency takes the goal as given but tries to maximize outcomes given the available resources. However, even here issues of human rights come into play. Quite often people espousing cost-efficiency focus on “low hanging fruit”. Continuing with the education example, assume the goal is to get as many children in school as possible for the lowest cost. Children with disabilities requiring lower levels of support will be much easier and less costly to get into school. If measured only by costs per child, therefore, the policy that appears the most “efficient” will not reach those with higher support needs. After the “low hanging fruit” policy is completed, then the per capita cost of educating the more disabled children who are still excluded will increase significantly. This will create a cost barrier for future inclusion. Therefore, while such an effort may help many people with disabilities participate quickly in the short run with a low per capita expenditure, it can subsequently raise the cost (and especially the per capita cost) of efforts to include people with higher support needs, thus creating resistance to being fully inclusive. An economic lens is important for zeroing in on policy levers that are fundamental to people’s economic well-being, and on evaluating the most cost-effective way of addressing exclusion, but that lens should be wide enough to incorporate the fundamental notion of human rights. The chapters in the section of the book will attempt to do that.

REFERENCES Adioetomo, SM., Mont, D., Irwanto, I. (2014). People with Disabilities: Empirical Facts and Implications for Social Protection Policies. TNP2K, Government of Indonesia. Alkire, S., Kanagaratnam, U., Suppa, N. (2018). The Global Multidimensional Poverty Index (MPI): 2018 revision. OPHI MPI Methodological Notes, 46. Banks, LM., Kuper, H., Polack, S. (2017). Poverty and disability in low- and middle-income countries: A systematic review. PloS One 12(12), e0189996.

690  Research handbook on disability policy Buckup, S. (2020). The Price of Exclusion: The Economic Consequences of Excluding People with Disabilities from the World of Work. International Labour Organization Working Paper No. 43. Clausen, J., Barrantes, N. (2020). Implementing a group-specific multidimensional poverty measure: The case of persons with disabilities in Peru. Journal of Human Development and Capabilities 21(4), 355–388. Hanass-Hancock, J., Nene, S., Deghaye, N., Pillay, S. (2017). “These are not luxuries, it is essential for access to life”: Disability-related out-of-pocket costs as a driver of economic vulnerability in South Africa. African Journal of Disability (Online) (6), 1–10. Institute on Disability/UCED (2018). 2018 Annual Report on Peoples with Disability in America. University of New Hampshire. İpek, E. (2019). The costs of disability in Turkey. Journal of Family and Economic Issues 41(2), 1–9. Levitt, SD., Dubner, SJ. (2014). Freakonomics. Penguin Books. Mankiw, NG. (2014). Principles of Economics. Cengage Learning. Mitra, S., Palmer, M., Kim, H., Mont, D., Groce, N. (2017). Extra costs of living with a disability: A review and agenda for research. Disability and Health Journal 10(4), 475–484. Mitra, S., Posarac, A., Vick, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Development 41(1), 1–18. Mizunoya, S., Mitra, S. (2013). Is there a disability gap in employment rates in developing countries? World Development 42(1), 28–43. Mizunoya, S., Mitra, S., Yamasaki, I. (2018). Disability and school attendance in 15 low-and middle-income countries. World Development 104, 388–403. OECD (2003). Transforming Disability into Ability: Policies to Promote Work and Income Security for Persons with Disabilities. OECD. OECD (2009). Sickness, Disability and Work: Keeping on Track in the Economic Downturn. OECD. Palmer, M., Groce, N., Mont, D., Nguyen, OH., Mitra, M. (2015). The economic lives of people with disabilities in Vietnam. PloS One 10(7), e0133623. Pinilla-Roncancio, M. (2018). The reality of disability: Multidimensional poverty of people with disability and their families in Latin America. Disability and Health Journal 11(3), 398–404. Robbins, L. (2007). An Essay on the Nature and Significance of Economic Science. Ludwig von Mises Institute. Skjoldhorne, S. (2019). The Effect of Disability Status on Parental Input: A Study from India. Master’s Thesis, University of San Francisco. https://repository.usfca.edu/thes/1184/ ​ ​ ​ ​ ​ ​ Trani, JF., Bakhshi, P., Brown, D., Lopez, D., Gall, F. (2018). Disability as deprivation of capabilities: Estimation using a large-scale survey in Morocco and Tunisia and an instrumental variable approach. Social Science & Medicine 211, 48–60. UNESCAP (2015). Disability at a Glance 2015: Strengthening Employment Prospects for Persons with Disabilities in Asia and the Pacific. UNESCAP. WHO, World Bank (2011). World Disability Report. WHO and World Bank.

59. Heightism, hierarchies and human rights: how a normalcy of disability infringes on the rights of people with dwarfism Erin Pritchard

INTRODUCTION The built environment has been purposely created to accommodate the average sized, able-bodied person, which disables people whose body deviates from this perceived norm, including people with dwarfism. This chapter adopts the term people with dwarfism as opposed to people of short stature, as the latter fails to encompass other conditions associated with the impairment. For example, the most common form of dwarfism is Achondroplasia which results in a disproportionate body size (Horton et al., 2007). A person’s trunk is of average stature whereas their limbs are smaller. This results in difficulties not only because of small stature but also in terms of reach due to their reduced arm length. Since the 1960s disabled people have been advocating for disability to be recognised as a social construct as opposed to a personal limitation. This understanding aids in framing disability as a social inequality. As a result, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) argues that disability is a human rights issue. The UK has ratified the CRPD and thus must enact its own policies to fulfil the treaty’s aims. In the UK, the Equality Act (2010) is underpinned by Part M of the Buildings and Regulations Act (2010). Part M is one of 16 statutory building regulations which create the UK’s national building standards. Each regulation focuses on a specific area, such as structure or ventilation, in order to ensure that buildings comply with relevant legislation. Part M focuses on access for disabled people. Part M requires the inclusive provision of ease of access to and circulation within all buildings, together with requirements for facilities for disabled people (Part M, 2010). Nevertheless, the Act fails to accommodate a range of disabled people, including people with dwarfism. In relation to access, people with dwarfism are seen as too costly. This can affect their access not just to public spaces, but also to educational institutions and workplaces. This chapter: ● Explores how Part M is inadequate in providing equal access for people with dwarfism due to a ‘normalcy of disability’, which results in a hierarchy of disability and impacts upon their human rights. Hierarchies of disability usually refer to people’s attitudes towards disabled people (Tringo, 1970). However, in this case it refers to preference in terms of access. ● Suggests that to remove this hierarchy the notion of disability needs to be broadened to include body sizes that exceed the norm. ● Analyses how Part M (2010) equates disability to mobility impairments and therefore ignores the access needs of people with dwarfism.1 For example, mobility impairments are 691

692  Research handbook on disability policy deemed the ‘disabled norm’ which results in them being the focus of access policies, whilst others are ignored or given limited attention. Whilst explained in more detail below, a ‘disabled norm’ draws on Lennard Davis’ (2006) concept of the norm, to refer to a socially constructed, archetypal group of disabled people, usually wheelchair users. The first part of this chapter explores how the built environment is disabling for people with impairments. More specifically it explores how people whose body size exceeds the norm are disabled in a one size fits all built environment. The second part focuses on how the provision of accessible spaces and facilities has led to a normalcy of disability. A ‘normalcy of disability’ refers to a specific group of impairments being constructed as the archetypal case, resulting in others being excluded from the conception of who disabled people are. This results in them not receiving appropriate disability support, such as accessible spaces which are accommodating for their impairment. The normalcy of disability is influenced by a neoliberal agenda which fails to accommodate a wide range of impairments, in this case people with dwarfism. Normalcy is influenced by access policies and reinforced by imagery associated with disability, including the International Symbol of Access (ISA). The ISA is a stick figure of a wheelchair user inside the profile. The ISA was created in 1969, and chosen by the International Committee on Technical Aids, to indicate accessible spaces and facilities for disabled people (Ben-Moshe and Powell, 2007). As the name suggests, the ISA is globally recognised as a symbol of access. The third part focuses on Part M of the Buildings and Regulations Act. Using a cost–benefit analysis, this section shows how a normalcy of disability is used to keep costs at a minimum, which subsequently ignores the needs of people with dwarfism. It is argued that implementing accessible spaces is seen as a benefit to disabled people, whilst those implementing the spaces deem them a cost. Thus, for those implementing accessible spaces, costs must be kept at a minimum and only provided where the benefits can outweigh the costs, i.e., where there are enough users. This conflicts with the human rights model of disability which the UK adopted when it ratified the UN’s Convention on the Rights of Persons with Disabilities (CRPD). In the last part, it is argued that properly implementing Universal Design can aid in removing a normalcy of disability, whilst providing a wide range of benefits to a greater extent of the population. As Universal Design accommodates a wider range of people it helps in reducing overall costs. Therefore, Universal Design is argued to be an appropriate design solution for meeting the aims of the UN’s CRPD.

DISABILITY AND THE BUILT ENVIRONMENT Access to the built environment is one of the most important aspects of achieving equality for disabled people. However, numerous spaces are disabling for people with impairments. These barriers are a result of how spaces are conceived. Hamraie (2013) argues that the design of buildings is not a value-free act, but reflects the values and assumptions of planners, designers and architects, regarding who they think should access them. Imrie (1996) blames architects and planners for creating an inaccessible environment that discriminates against people with impairments, creating social inequalities. As Imrie (2004: 281) states:

Heightism, hierarchies and human rights  693 ...there is a tendency for architects to design and construct spaces to specific technical standards and dimensions, which revolve around the conception of the ‘normal’ body, creating physical barriers for anyone who does not fit the conception of the normal body.

The idea of creating spaces for the average person relates to particular conceptions of normalcy. According to Davis (2006) norms are created by the dominant idea of how bodies should be. The concept of ‘normalcy’ implies that most of the population must or should somehow be part of the norm, making them the dominant group within society. The construction of public spaces allows the dominant group within society, which in this case are people of average stature, to be able to fully interact effectively in spaces with limited disruption. However, for those who are not part of the norm, the built environment can be a disabling space. Providing for the norm is based on the fact that the majority are the most cost-effective group to accommodate. Huff (2009) argues that creating products to a specific standard of size increases profits for corporations. As a result, the materiality of spaces can be disabling for people whose body size does not adhere to these average standards (Longhurst, 2010). A height that exceeds the norm is disabled in a one size fits all built environment, especially when viewed from a social model perspective. According to Pritchard (2014: 64) ‘[i]f the size of a space or facility was not a contributing factor to a person’s disablement, then there would be no need to ergonomically construct a space or facility for the average sized person.’ Thus, height should be a human rights issue and included in relevant policies. Height is an important identity, but it is often neglected when discussing issues of discrimination or human rights. In the USA, only the state of Michigan has laws that explicitly prohibit discrimination based on height. Furthermore, we often think about the rights of disabled people with mobility impairments, but ignore those whose impairment is based on height. Pritchard (2021) explores how people with dwarfism encounter many disabling barriers within public spaces, including within supposedly accessible spaces. The lack of access people with dwarfism experience is a form of heightism. Heightism is defined as ‘unfair treatment based on height, especially: prejudice or discrimination against short people’ (Merriam-Webster, 2020). However, unlike other ‘isms’ heightism is given limited recognition as a form of discrimination. Nakamura (2006) explains that as a short person and someone from an ethnic minority, whilst she finds it easy to call out any racial discrimination towards her, it is harder to speak up about any heightism she experiences because it is not taken as seriously. This is a contributing factor to the creation of a disability hierarchy.

DISABILITY HIERARCHIES The main goal of the social model is to provide increased inclusion within society, including improved access to the built environment. The social model of disability takes the focus away from the person and instead places it onto society and the disabling barriers it imposes upon them (Oliver, 2004). It is used not only in academia but also as a political tool to promote positive changes within society for disabled people, including the implementation of disability-related policies and legislation. Over the past 40 years, there has been an increase in the provision of disability accommodations within the built environment. Laws can support access for disabled people, but in some cases they can also deny or limit its availability (Goggin et al., 2017). This is dependent on

694  Research handbook on disability policy how the law is constructed and whom it includes. Whilst people with dwarfism are considered disabled under the Americans with Disability Act (1990) and can be considered disabled under the definition of disability in legislation such as the Equality Act (2010), they are often denied the same access rights as other disabled people. It can be argued that this is due to who is conceived as disabled. Activism in the 1960s and 1970s helped to position disability as a social construct, rather than a personal tragedy. Bickenbach et al. (1999) point out that the disability rights movement can be credited for the implementation of accessible spaces. Whilst the disability movement, which led to the creation of the social model of disability, has on the one hand been key to gaining disability access, on the other hand, it can be criticised for influencing a hierarchy of disability. A criticism of the social model relates to its development by mostly people with physical impairments. These activists were mostly wheelchair users, so it is not surprising that their presence and concerns aided in influencing how disability is understood. Numerous photographs of wheelchair users on protest marches, or being handcuffed to buses, have unintentionally created a specific idea of who is a disabled person. However, we should criticise not their work, but perhaps how others have interpreted disability from these events. Several Western societies have adopted policies that aim to provide disabled people with minimal access to public buildings. These policies have resulted in ‘added-on access’, which Dolmage (2016) argues is an inadequate solution to capitalism’s own crisis. Some Western societies favour neoliberal agendas. In many cases, the added-on access is based on what is the most cost-effective solution, as opposed to what can provide access for numerous disabled people. Federing and Lewis (2017) argue that the provisions of accessible spaces are not as clear as first thought as discrimination can still occur if certain disabled people are seen as too costly. These costs are dependent on what access is required and providing for the most common needs. Not providing access for all disabled people is an infringement of their human rights. Everyone should be entitled to the same access to public spaces. The World Health Organization (WHO) (2011) argues that disability is a human rights issue as disabled people experience numerous inequalities. As a result of activism, which exposed how the built environment is disabling for people with impairments, the intergovernmental organisation the United Nations (UN) introduced the CRPD, which is a legally binding convention on the rights of all disabled people to full participation and equality within society (Series, 2020). The CRPD aims ‘...to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’ (CRPD, 2007). Yet, the way the CRPD is enacted within state policies does not result in access for all, but rather for a limited number of disabled people who fit within a normalcy of disability. This is enacted through the notion of minimum standards and the doctrine of ‘progressive realisation’, which can result in the prioritisation of whose rights are ensured first. Under the CRPD, Article 9 specifies that states must implement ‘minimum standards’, but this conflicts with ensuring equal access for all. Minimum standards do not ensure that ‘access is for all’, instead they provide a more cost-effective approach. According to Federing and Lewis (2017), even though accessibility is deemed a human right, costs are a limiting factor in providing accessible spaces for disabled people. Minimum standards can be seen as a way for allowing countries only to provide a limited amount of accommodations for impairments that are the most cost-effective in terms of monetary value. Other accommodations, which

Heightism, hierarchies and human rights  695 exceed the minimum can be neglected if they are not deemed to be cost-effective. According to Titchkosky (2011) human rights legislation often refers to accommodations that impose an ‘undue hardship’ on employers, governments or other entities. This suggests that disabled people can only be accommodated if they are not too costly. The problem with trying to ensure the most rights for the least money is that it leaves those people behind who require more support and whose needs are more expensive. At the same time, by ensuring others’ rights, it undermines the political movement behind achieving everyone’s rights. ‘Access for all’ becomes mere rhetoric within a neoliberal society. What is problematic is that body sizes that exceed the norm are not always deemed as disabled, and subsequently they are not accommodated. Degener (2016: 19) points out that ‘the CRPD fails to take into account the dilemma of difference’. In no part of Article 9 is height mentioned meaning that access for people with dwarfism is not a requirement. Instead, minimum standards are provided for more stereotypical disabilities, such as mobility impairments. Imrie (1996) suggests that when disability access is provided, often through the implementation of accessible spaces, it is not enough to provide an inclusive built environment. This is despite the CRPD proclaiming that all disabled people are rights holders (Degener, 2016). If the CRPD only adheres to minimum standards and fails to provide for people with dwarfism then it reinforces a hierarchy of disability, which does not promote equality. This results in a normalcy of disability.

A NORMALCY OF DISABILITY According to Davis (2006: 3), ‘we live in a world of norms’. Those who fit the norm, or average, are deemed privileged. The average sized person is considered part of the norm as they make up the majority. In relation to height, those who fall above or below the average are considered abnormal. Dasen (1988: 253) points out that ‘dwarfism is over three standard deviations below the mean height of the population’. Therefore, people with dwarfism are considered abnormal and are disabled in a world created for the average sized person. When focusing more specifically upon disability a normalcy can also be produced. Furthermore, disabled people are often conceived as a homogenous group and thus a further norm, situated within disability, has been overlooked. Disability is made up of numerous groups: not just groups, such as people with sensory impairments, physical impairments and cognitive or psychosocial impairments, but also those with various impairments within these sub-groups. A normalcy of disability can be defined as the favouring of a specific group of people with impairments who are deemed the majority and subsequently the most cost-effective to provide for. For there to be a normalcy of disability there must first be a group of disabled people who are considered the majority, the standard or the norm. Worldwide, there are approximately 250,000 people who have Achondroplasia (Horton et al., 2007). Achondroplasia accounts for 70 per cent of all cases of dwarfism and occurs in one per 26,000 to 40,000 births (Little People of America, 2020). There are over 400 different types of dwarfism, such as SEDc (one per 95,000 births) and Diastrophic dysplasia (one per 110,000 births) (Little People of America, 2020). Whilst the numbers may seem large, in a worldwide population of over 7 billion, dwarfism can be considered a rare condition. Degener (2016) points out that accessibility standards may often be inappropriate in meeting the needs of those with rare impairments.

696  Research handbook on disability policy There are 75 million people who use a wheelchair (WHO, 2011). This of course is a considerably larger population than people with dwarfism, which makes it more economical to provide for wheelchair users. Fritsch (2013) points out that disability and accessibility are often tied to the wheelchair. However, less than 8 per cent of disabled people in the UK use a wheelchair (Sapey et al., 2005). Yet, they dominate disabled imagery as it makes it easier for people to recognise that the person is disabled. Even when looking through various booklets about the UN’s CRPD, the majority of images featuring disabled people are of wheelchair users. This reinforces a normalcy of disability, which can be used to deny the implementation of accessible spaces and facilities for a range of disabled people. Using a cost–benefit analysis, for an accessible space to be implemented, the benefit of the space must first outweigh the costs. Benefits can be based on the perceived number of users. This can be linked to a normalcy of disability. A normalcy of disability is constructed by non-disabled people to reduce disability to an easily identifiable group, which is also the most economical to accommodate for. If it is perceived that a high number of disabled people will use the space then it will be worth the cost. However, because people with different impairments have different needs it is not straightforward to assume that a facility for one group of disabled people will benefit others. This is where it becomes cost-effective to implement for the most common group of impairments, creating a normalcy of disability. As a result, some people are deemed beyond inclusion (Titchkosky, 2011), which is reflected within numerous pieces of legislation. Pritchard (2014) points out that both wheelchair users and people with dwarfism are denied full access to public spaces; however, due to a narrow conception of disability, the accessibility and elimination of barriers are only provided for the former (although, they are still often only minimal), creating a hierarchy of disability. Attitudes towards different impairments vary within society, creating a hierarchy (Deal, 2003). This includes what people consider an impairment to be, which results in some being more widely accommodated than others. A hierarchy is a system of oppression between at least two strata: the privileged and the oppressed (Nakamura, 2006: 65). In terms of access, the privileged refers to the group of disabled people being accommodated. This hierarchy is influenced by a neoliberal agenda and within particular disability imagery. In a neoliberal society, ‘minimal standards’ or ‘reasonable adjustments’ are key terms in ensuring that costs can be kept to a minimum. A lack of accommodation raises the question of ‘who belongs’ (Titchkosky, 2011). Images such as the ISA, a person in a wheelchair, are enough to convince the general public that enough has been done to accommodate ‘all’ disabled people. In reality, these accommodations fail to provide access for all but are just a cost-effective way of increasing overall access measures for some people, while leaving behind others who are thus further marginalised. Disability stereotypes, influenced by popular images, have led to a very narrow view of who is disabled, influencing a problematic hierarchy concerning access, creating a population of disabled people who seem to be undeserving of accessible spaces. This can be the result of not being deemed disabled enough or the rarity of the impairment making accommodations not economically viable. Pritchard (2020) argues that the ISA, as well as general disability imagery, has reinforced the idea that wheelchair users make up the vast majority of disabled people. Subsequently, this has aided an economic-influenced initiative of only providing limited disability access. Stereotypical disability imagery reflects architectural concepts of disability. Disability tends to be understood as a mobility impairment, which focuses architects’ attention on wheelchair

Heightism, hierarchies and human rights  697 users at the expense of other disabled people (Imrie, 1996). Wheelchair users are classed as the ‘norm’ in a disability context. What is problematic is that how we understand disability impacts how we respond to it (Series, 2020). Accessible spaces and the facilities within them are made for the average wheelchair user. Just like the built environment is made for the average sized person, accessible spaces are created for the average sized wheelchair user. As a result, accessible spaces often neglect the need to accommodate body sizes that exceed the norm (Pritchard, 2021). This normalcy of disability contributes to a hierarchy of disability, which creates a hierarchy of privilege, and this is reflected in conventional architecture (Dolmage, 2016). The average sized body is privileged within non-disabled spaces, whilst wheelchair users are predominantly privileged within accessible spaces.2In both cases, body sizes that exceed the norm are deemed to be abnormal users. An example of an access hierarchy that I experienced myself was when I was at university and reported to the disability support officer that the supposedly accessible self-service scanner in the library was inaccessible. A self-service scanner is an example of a neoliberal form of access, which aims to save costs through reducing staff numbers. The response was that it was wheelchair accessible and complied with the Disability Discrimination Act (1995). The supposedly accessible facility had been provided and thus it was a case of ‘job done’. As it complied with this Act I felt powerless to fight for a more accessible alternative. I also felt as if I was asking for too much. Disabled people are often considered an economic burden. If I asked the university to provide a more accessible accommodation on top of a supposedly already accessible one, it would have constructed me as an economic burden, especially as the facility was already implemented on the premise that it would reduce costs. Kitchin (1998) argues that disabled people are excluded from spaces due to both capitalism and cultural representations. Both of these are also contributing factors to a ‘normalcy of disability’. Despite dwarfism being recognised as a disability under the Americans with Disability Act (1990), it is often contested as a disability as it is not a functional limitation but rather a bodily difference (Pritchard, 2021), i.e., ‘you’re just small’. Chan and Gillick (2009) argue that there is a lack of understanding of disability as it is commonly thought of as consisting solely of physical limitations, which therefore ignores the disabling experiences of body sizes that exceed the norm. Shakespeare et al. (2010) point out that dwarfism has limited status within the disability community. Added to this Pritchard (2020) argues that cultural representations of dwarfism differ from stereotypical representations of disability. Dwarfism is often depicted as humorous and entertaining, with no signs of impairment, whereas a stereotypical disabled person is depicted as requiring help or being confronted with an inaccessible space. Butler and Bowlby (1997) suggest that media images that show wheelchair users who are unable to gain entry into public buildings have helped to create a particular conception of the problems that disabled people encounter within the built environment. Furthermore, the most iconic symbol of disability, the ISA, is a depiction of a wheelchair user. The ISA is a symbol that promotes a normalcy of disability. According to Fritsch (2013), the ISA is grounded within neoliberalism and constructs disability in a particular way. The ISA has been criticised for creating a narrow view of disability, which aids in denying access to those who do not match the symbol (Ben-Moshe and Powell, 2007; Fritsch, 2013; Powell and Ben-Moshe, 2009; Pritchard, 2020). It is suggested that in depicting a wheelchair user as a symbol of access, wheelchair users come to symbolise all other forms of disability (Fritsch, 2013). It can be argued that the ISA is a supportive device for the neoliberal agenda to accom-

698  Research handbook on disability policy modate a narrow range of disabled people, whilst appearing to show that access has been provided for all. The ISA has both social and political significance (Powell and Ben-Moshe, 2009). In terms of politics, it can be adopted by neoliberal governments to ensure that only minimal access is provided. The ISA reinforces a stereotype that supports a neoliberal agenda to focus on the needs of the market rather than society. Fritsch (2013) points out that the ISA encourages disability to be seen as requiring accommodations only for wheelchair users, i.e., ramps and elevators. This means that accommodations for other people with impairments can be ignored and subsequently economic savings can be made. Imagine if all disability imagery was dominated by images of people with dwarfism, including the ISA. This could include people with dwarfism trying to reach a high door handle or shelf. These images would shift people’s understanding of disability to one which is dominated by size as opposed to mobility. Planners would be more aware of the access needs of people with dwarfism and focus less on other disabled people, including wheelchair users. I am not suggesting that this should happen, but rather demonstrating how lazy stereotypes influence people’s understanding of disability and subsequently create a hierarchy. When we think of a typical wheelchair user, we think of someone who cannot walk or someone who can only walk short distances. When we think of someone with dwarfism the first thing that comes to mind is their profound short stature. ‘Dwarf’ means to be made smaller than. For example, I am dwarfed by average sized people and their surroundings. Yet, accommodations that are lower in height are designed for wheelchair users, whilst people with dwarfism are often ignored and expected to either struggle or magically stretch to be able to interact with these facilities. Pritchard (2020) demonstrates how people with dwarfism are often challenged for using accessible spaces and facilities that have been purposely lowered in height as they are deemed for wheelchair users only. It is hard to argue that wheelchair users are a privileged group, whereas the designers and policymakers, who tend to be non-disabled, are the privileged groups who choose to implement accessible facilities for a narrow range of disabled people based on their own agenda. Disabled people are oppressed by the built environment and have little power to change it (Imrie and Kumar, 1998). Legislation and policies associated with access can be difficult to access and are devised by non-disabled people.

PART M OF THE BUILDINGS AND REGULATIONS ACT Part M, which first appeared in 1987, is part of the UK Building Regulations, which are a set of rules which architects supposedly adhere to (Imrie, 2007). Since 1987 the Act has been revised. The 2010 version is the subject of this section. Part M consists of two volumes. Volume 2, which is explored in this chapter, focuses on access to public buildings and aims to ensure that they are accessible for disabled people in compliance with the Equality Act (2010). In the UK, the Equality Act (2010) aims to bring together existing legislation, including the Disability Discrimination Act (1995), into a single framework for equalities legislation. It can be seen as a reaction towards the UK’s commitment to the CRPD. As a response to signing the CRPD, most state members have reviewed and revised their own disability legislation (Degener, 2016). However, this does not necessarily mean that any improvement has been made, but merely that the same economic guidelines have been followed.

Heightism, hierarchies and human rights  699 Under Section 20 of the Equality Act (2010), reasonable accommodations should be made to accommodate disabled people. Like the CRPD, UK legislation uses terms such as ‘minimal’ or ‘reasonable’, which are problematic in ensuring access for all. Under the Equality Act (2010), reasonable accommodations are only subject if the disabled person is at a ‘substantial disadvantage’. This of course can be interpreted as only requiring accommodations in particular circumstances. For example, is a person with dwarfism at a substantial disadvantage if they can barely see over a counter when ordering a coffee, or is that just a mild inconvenience? Dolmage (2016) refers to disability access as a form of ‘retrofit’, which is a response to new regulations. Part M of the Buildings and Regulations Act requires inaccessible buildings to be altered to provide access for disabled people. However, they are described as ‘reasonable accommodations’ which Dolmage (2016: 105) argues are an indication that ‘disability is supplementary to society, and that it is an afterthought or an imposition’. ‘Reasonable’ is used to provide a cost–benefit analysis of the accommodation. It is only reasonable if the benefits outweigh the costs. However, only considering the costs ignores the issue that disability is a human rights issue and thus access should be mandatory. Just because Part M states that buildings should provide access for disabled people, it is problematic to assume that it includes all disabled people. According to Imrie and Kumar (1998), disabled people’s needs are poorly articulated/represented and regulations are weak. They are dependent on people’s understanding of disability, including whom they consider as disabled. Using the term ‘disabled people’ whilst only focusing on the access needs of groups of people with specific impairments (i.e., wheelchair users) helps to convince others that access has been provided for all. It aids in promoting the idea that all disabled people are rights bearers, when in fact they are only deemed worthy of these rights if they prove not to be too much of an economic burden. The needs of one group of disabled people will differ from those of another. Therefore, to make the built environment accessible for disabled people means providing a wide range of accessible spaces and facilities. This need can be seen as too costly and therefore by representing disabled people as one homogenous group it can be easy to claim that access has been provided for disabled people even if only a particular group (the norm) is considered. Whilst Part M does consider the implementation of lower counters, most access, for people with physical impairments, revolves around wheelchair users, including the height of facilities, for example: Wheelchair users should be able to reach all the facilities available within the building. (Part M, 2010, Section 4.18)

Whilst height is strongly constructed by the notion of normalcy and therefore heights that deviate in extremes from the norm are disabled, they are rarely considered as disabling. Because there are more wheelchair users than people with dwarfism, lower facilities are produced according to the average stature and reach of a wheelchair user (Pritchard, 2021). This can have implications for people with dwarfism using accessible spaces. The average height of an adult with dwarfism is 4’0 (1219mm), but typical heights range from 2’8 (853mm) to 4’8 (1463mm) (Little People of America, 2020). The average stature of a wheelchair user is considered to be 4’6 (1400mm). This is considerably taller than the average person with dwarfism, and taking into account the fact that typical wheelchair users are considered to

700  Research handbook on disability policy have an average arm length means that facilities lowered for them will still be out of reach for people with dwarfism: …Apart from smaller counters and things but even then people in wheelchairs have still got the reach as they have average sized arms whereas they don’t think about it for us at all. (Monica, in Pritchard, 2021)

Only lowering facilities to suit a typical wheelchair user may only minimise a disabling situation for people with dwarfism. There are still issues of reach which are not accounted for. This creates a hierarchy, where a typical wheelchair user is provided with an accessible accommodation whereas a person with dwarfism is likely to still struggle for access. To remove this hierarchy the average stature of a person with dwarfism should be accounted for as well as their reach. Pritchard (2016) argues that accessible spaces can be both enabling and disabling for people with dwarfism. An example of this is the accessible toilet. People with dwarfism are unable to use the facilities in the non-disabled toilets as they are out of reach. Despite facilities in the accessible toilet being easier to reach for people with dwarfism, they are still not always accessible as it is presumed that a typical wheelchair user has an average arm length. The height of the toilet in the accessible toilet is also problematic for people with dwarfism: Disabled [sic] toilets are often, the actual toilet which is porcelain is very often high, but it is high because they are assuming that the disabled person is a wheelchair user and needs it that high to transfer from wheelchair to the toilet so often it is too high for us to get on to. (Lydia, in Pritchard, 2021)

Whilst, understandably, some disabled people will require a higher toilet, this presents a disabling barrier for people with dwarfism. Kitchin and Law (2001) point out that the design of supposedly accessible toilets does not take into account the different needs of disabled people. A more suitable solution would be to include multi-level facilities, such as a lower sink, soap dispenser and paper towel dispenser in the non-disabled toilets. This will provide more appropriate access for people with dwarfism without impinging on the needs of some wheelchair users. For example, a tap could be placed on the side of a sink allowing a person with dwarfism easy reach without impeding the access needs of other users. As a result, both wheelchair users and people with dwarfism will benefit from the facility. This makes it more cost-effective as the benefit is increased. Part M does not take into account the position of some facilities, even if they have been lowered. Most taps and soap dispensers are placed behind the sink, and so consideration is not given to the shorter arm length of someone with dwarfism. This is why lower-level facilities should not be regarded as suitable for disabled people, just because they are reachable by wheelchair users. Limited consideration is given to people with dwarfism in Part M of the Buildings and Regulations Act, aside from mentioning that car park ticket dispensers, and in some circumstances handrails, should be lowered to provide access for people with dwarfism when using staircases: Consideration should be given to the provision of a second handrail on stairs in a wide range of building types, and particularly in schools, for use by children and people of short stature [people with dwarfism]. (Part M, 2010, Section 1.36)

Heightism, hierarchies and human rights  701 Consideration does not mean that the facility is compulsory and therefore it will not necessarily be implemented. Consideration will be based on the costs of the facility versus the benefits. Furthermore, the use of ‘particularly’ in schools indicates that priority is where there is more of a benefit. Lower handrails in schools should be welcomed; however, this will not necessarily benefit people with dwarfism, unless they are attending or working within a school. As opposed to particular attention being given to schools, attention should be given to public buildings in general where both children and people with dwarfism are likely to use them. In previous research (see Pritchard, 2014), I have argued that implementing low-level facilities not only benefits people with dwarfism, but also children. I felt uncomfortable making this claim for two reasons. First, people with dwarfism are often infantilised due to their body size being similar to that of a child’s. This infantilisation is patronising and can impact their social standing. Second, for a group of disabled people to be provided with access, which is deemed a human rights issue, this should not be achieved by advocating for the needs of other users. The access needs of people with dwarfism should be worthy enough. However, including the access needs of children aids in promoting the argument that the benefits of the facility will outweigh the costs due to the increased number of users. A handrail that is difficult to reach is likely to be a safety hazard for people with dwarfism, especially since most steps will be steeper for them to use due to their shorter legs. As stipulated in Part M each step should be 150–170mm in height (Part M, 2010, Section 1.33). This may be accessible for average sized people, but will be more difficult to access for people with dwarfism: …a step is often the same height as our knee. (Joan, in Pritchard, 2021)

In relation to disability access, stairs are not considered as they are seen as a disabling barrier for wheelchair users. This does not mean though that other disabled people should not have appropriate access to them. Since Part M considers the need for a lower handrail, then it should not be surprising that the stairs will also need to be accessible. However, it is easier and less costly to just install a lower handrail than alter any stairs. The rest of Part M does not include the needs of people with dwarfism, even when considering the height of facilities, which is detrimental to providing access for people with dwarfism. Instead, the height of accessible facilities is based on the average wheelchair user. Despite disabled people sharing common experiences it still needs to be recognised that the experiences of different impairment groups vary (Shakespeare et al., 2010). A more appropriate solution would be to ensure that both people with dwarfism and very tall people can reach all facilities. This means that all body sizes will be accommodated for, as well as wheelchair users. Concerning sleeping accommodation no consideration is taken in regards to the needs of people with dwarfism: A proportion of the sleeping accommodation in hotels, motels and student accommodation should be designed for independent use by wheelchair users. The remainder should include facilities that make them suitable for people who do not use a wheelchair, but may have mobility, sensory, dexterity or learning difficulties. (Part M, 2010, Section 4.4)

People with dwarfism will have difficulty in reaching and getting in and out of certain facilities found in the accommodations mentioned above, including beds, showers and baths. Therefore the ‘remainder’ should also include people with dwarfism. However, the section only focuses

702  Research handbook on disability policy on providing accommodations for functional limitations, as opposed to a bodily difference. An average sized bath, found in most of these accommodations, will be difficult and unsafe to get in and out of for someone with dwarfism, especially due to their shorter limbs, including a short inside leg. The alternative is to use a shower, although it is not guaranteed that the controls will be within reach as they are placed at a height suitable for the average sized person. If student accommodation is not suitable for people with dwarfism, this can limit their choice of university and impact their educational opportunities. As education is a human right then states should ensure that all disabled people have the appropriate access. In my current place of employment, when our new office block was being refurbished I argued that minimum standards for disability access would not be enough. I explained how not only did one of the sinks in the kitchen need to be lowered, but the tap would also need to be moved away from the wall and placed on the side. However, minimum standards only posit that the sink must be at a height suitable for the average wheelchair user, whereas there were no guidelines to ensure that the tap needs to be in easy reach. It was only through goodwill that the tap was positioned on the side and within reach. Also, if I had required the sink to be any lower, this would not have been possible as it needs to be at a suitable height for wheelchair users, even if it meant that as a result somebody with dwarfism could not reach it. Whilst I would not want to disable anyone who uses a wheelchair, this example demonstrates how their access needs are prioritised over the needs of others.

CHOOSING A MORE INCLUSIVE APPROACH – UNIVERSAL DESIGN Creating spaces that can accommodate different body sizes gives greater access to a wider range of people. An understanding of human diversity is critical to designing a built environment that incorporates all users (Story et al., 1998). Universal Design not only accommodates people with more common types of impairments, including wheelchair users, but also people who are not always regarded as having a disability or whose disability is often contested. Universal Design is composed of seven principles, which aim to provide accessible spaces and facilities for a wide range of people. Principle seven focuses on providing spaces that are accessible for a range of body sizes: Design Principle Seven – Size and Space: for approach and use. Appropriate size and space is designed for approach, reach, manipulation, and use, regardless of the user’s body size, posture or mobility. (Centre for Universal Design 1997 in Steinfeld and Maisel, 2012: 12)

Universal Design is often not adopted by planners as it is seen as too costly (Odeck et al., 2010). However, proponents of Universal Design argue that with many Western societies experiencing an ageing population the benefits of Universal Design will outweigh the costs (Steinfeld and Maisel, 2012). However, this is dependent on what aspects of Universal Design are being implemented. Some elements yield more benefits than others (Odeck et al., 2010). In this case, access for older people will be more cost-effective. Yet, as shown, dwarfism is not a common impairment and thus accommodations for people with dwarfism will need to benefit others. The number of people who are oversized or undersized is far greater than the combined populations of older people and disabled people (Steinfeld and Maisel, 2012). Accommodating for these different body sizes therefore should be of economic benefit.

Heightism, hierarchies and human rights  703 This mean not just accommodating people with dwarfism, but instead implementing facilities at different heights or providing a facility that can be adjusted in height. These will also accommodate wheelchair users and will not impact non-disabled, average sized users. For example, on most trains there is a button to open the automatic doors between carriages. On some trains, these are placed out of reach for people with dwarfism. However, if they are placed lower down or if there is a choice of two buttons (one very low and one high) then access can be provided for all. Odeck et al. (2010) point out that providing these facilities is a low-cost provision, especially if it is provided from the outset. When the facility, which is accessible for people with dwarfism, also benefits others, costs are reduced.

CONCLUSION ‘Access for all’ is pure rhetoric within a neoliberal society. People with dwarfism experience numerous disabling barriers which are a form of heightism and impact their human rights. The access needs for people with dwarfism are given limited consideration and mostly appear through the coincidence of access provisions for other impairments. This indicates that there is a hierarchy of disability concerning access provision. Equality for all disabled people cannot exist whilst there are hierarchies of disability. The lack of accommodations for people with dwarfism is based on a normalcy of disability, which is influenced by a neoliberal agenda. A normalcy of disability makes it seem as if access has been provided for all disabled people, when in fact it has only provided access for a minority. Part M fails to adequately take into account the needs of people with dwarfism. In terms of height, provisions mostly cater for wheelchair users despite people with dwarfism also requiring low-level facilities, and in some cases lower than expected for a wheelchair user. Part M should recognise body sizes that exceed the norm as disabled in a built environment created for the average sized person. Wheelchair users, people with dwarfism and very tall people can all be accommodated through multi-level and adjustable facilities that take into account a range of body sizes. Disability imagery, including the ISA, aids in reinforcing a normalcy of disability. A normalcy of disability only provides a limited amount of access. It is inadequate in providing true access, which was the aim of the disability movement and the social model. True access cannot be attained when governments favour neoliberal agendas. The UK, under the neoliberal coalition government, was the first country to be investigated by the UN. In 2016, the UN found that the UK was failing to fulfil the pledges they had signed up to due to austerity. However, the UK’s response was not one of concern but rather blatant ignorance, demonstrating how little impact the UN has upon how it treats its disabled citizens. It seems that the UK’s commitment to the UN’s CRPD is more for show. In other words, it is a Western society that claims to favour its citizens, unlike less developed countries. It is the same in regards to access.

NOTES 1.

Start of endnote. Whilst this chapter focuses on a normalcy of disability in relation to height, it can be applied to other impairments, including invisible impairments such as Cystic Fibrosis and Lupus. End of endnote.

704  Research handbook on disability policy 2.

Start of endnote. However, this is not to imply that all wheelchair users are provided with adequate access within accessible spaces or that there are enough accessible spaces, but rather the bare minimum. End of endnote.

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60. Post-school transition process in a pandemic: how can young people with disability be better supported?1 Helen Dickinson, Catherine Smith, Amy Marks and Jess Mitchell

INTRODUCTION As a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), Australia recognizes the right of people with disability to work on an equal basis with others (Article 27). Economic participation is central to supporting people with and without disabilities to meet socio-economic needs, maintain health and well-being, and civil and political participation. Indeed, the socio-economic and mental health benefits of employment versus unemployment for people with disability are likely to be even more significant than for people without disability (Aitken et al., 2020). Concomitantly, the negative effects of unemployment (social exclusion, economic disadvantage, poor mental and physical health, housing insecurity) are more likely to impact people with disability due to the existing socio-economic disparities this group is often exposed to (Emerson et al., 2018). Transitioning out of high school can be a difficult experience but is crucial in ensuring future economic and community participation. Having a secure pathway into further education or work provides increased independence and a sense of meaning (Sainsbury and Coleman-Fountain, 2013), as well as opportunities for social inclusion and a sense of adult identity, which are important determinants of well-being (Ineland et al., 2021). Substantial evidence suggests young people with disability have significant challenges in transitioning from school. This is problematic because a poor experience at this point can lead to negative life outcomes relating to low participation in employment or tertiary study and social exclusion. Difficulties during transition can have adverse social inclusion and labour market outcomes throughout the life of a person (Vuolo et al., 2014) resulting in overall lower quality of life (Vancea and Utzet, 2017). In contrast, a secured pathway towards further study or employment offers increased cognitive functioning, social interaction opportunities and peer relationships (Traina et al., 2021). Gaps in employment rates between those with and without disabilities persist in many countries (Jurado-Caraballo et al., 2020). In Australia, 47.8 per cent of people with disability of working age (15–64 years) in the labour force (i.e., looking for or in paid employment for at least one hour a week) are employed (i.e., working at least one hour per week), versus 80.3 per cent of those without. The unemployment rate of Australians with disability sits at 10.3 per cent compared with 4.6 per cent of those without (Australian Bureau of Statistics, 2019). Young people with disability are often unemployed, under-employed or earn less than those without, and even when highly educated are less likely to achieve employment. We argue effective transitions from high school are an important but underexplored part of this picture. 706

Post-school transition process in a pandemic  707 This chapter reports on data gathered from young people with disability who left high school in 2020 or 2021. The existing evidence base suggested school transitions for young people with disability were not generally well supported. We sought to explore whether the COVID-19 pandemic further exacerbated these issues. The research was co-produced between two academics (HD, CS) and two young people with disability (AM, JM) employed by the advocacy organization Children and Young People with Disability Australia (CYDA). Our research finds post-high school transition processes for young people with disability were not well supported during the COVID-19 pandemic. This was no surprise to interviewees as schools often did not support these students well. We make several recommendations about what might be done differently to support this process more effectively.

SCHOOL TRANSITIONS FOR YOUNG PEOPLE WITH DISABILITY The term ‘school transition’ is used to refer to the movements into, between, and out of education settings. We experience a range of transitions including in and out of early childhood settings, primary school, middle school, high school, and tertiary or post-school environments. In this chapter we focus on the transition between high school and a range of post-high school destinations that young people may experience. Transitions are a time of change and challenge (Humphrey and Ainscow, 2006). During transitions, students must accomplish both the emotional work of detachment associated with departure, and the work of building attachments with a new community. Transitions involve emotional labour and relationship work (Stringer and Dunsmuir, 2012). They are a time of opportunity; many young people will enjoy the positive features of change and opportunities to become a member of a new community, to encounter new experiences, and to advance in their learning (Crafter and Maunder, 2012). However, transitions can also be associated with anxiety, grief, and loss of social and emotional support. Students who have negative transition experiences are more likely to experience depression, lower learning attainment, poorer peer connections, lower self‐esteem, and higher levels of anti‐social behaviour (West et al., 2010). Some students are more likely to experience transition as a period of stress and turmoil (Jindal-Snape and Miller, 2008). Risk factors for difficult transitions include: having attended more than one primary school (Lleras and McKillip, 2017); frequent previous school absences (Carmen et al., 2011); previously being disengaged from formal education (West et al., 2010); school refusal (Bloyce and Frederickson, 2012); having been bullied (Carmen et al., 2011); worries about safety, making friends, relationships with teachers (Makin et al., 2017); low self-esteem or self-confidence (Makin et al., 2017); and not belonging to the dominant culture represented in school materials and practices (McGee and Johnson, 2004). Young people with disability experience a number of these risk factors at higher rates than their peers and are therefore more likely to encounter challenges with times of transition. In the transition from school to further education or work, additional considerations emerge. For example, in transitions to the labour market, young people may hold multiple part-time/ entry-level jobs or be required to take unpaid work experiences or internships to build skills that contribute to finding and sustaining secure employment. An increasingly competitive employment market and a lack of education about disability for employers in the workplace are additional hurdles in securing successful school to work transitions (Ineland et al., 2021); however, some of these challenges can be overcome with workplace learning opportunities

708  Research handbook on disability policy while the student is still in school. Research is sparse in accounting for successful elements of transition programmes (Traina et al., 2021), which can include academic or functional curriculum (Rich-Gross, 2014), support of job coaching (Ineland et al., 2021), or assistive technology (Fasching, 2014). What is identified is that students with disabilities benefit when provided strong instruction, meaningful experiences, and personalized supports as they transition from secondary school (Haber et al., 2016). Evidence from a national survey conducted by CYDA found 80 per cent of respondents feeling schools are not providing appropriate information or support about career planning and more than half do not receive adequate support to think about or plan their future or find the assistance and information that their school provides to be useful (CYDA, 2019). Two-thirds of respondents felt their school did not have high expectations of young people with disability with respect to employment or further education. Fewer than one in five students report receiving assistance in understanding their strengths and skills for post-school transition; practical assistance such as résumé-writing; or assistance to plan any study or training. Additionally, parents report feeling a significant degree of responsibility for the career-planning process and note that the support provided is generally not tailored to students with disability, and therefore options are limited. There are also concerns that students with disability, especially in segregated education settings, are encouraged by schools to enter the supported employment system rather than seek or aspire to open employment. As a result, many young people with disability leave school with no plans for life post-school and no links with any education, employment, or activities outside the home. If young people with disability are to participate economically and in community life, it is clear post-school transition needs to be well supported.

METHODOLOGY The research for this chapter was underpinned by a co-production approach between two university-based academics (HD and CS) and two young people with disability (AM and JM). At the time of this research, both young people worked for the advocacy organization Children and Young People with Disability Australia (CYDA). Co-production of research can help ensure that the concerns and interests of people with disability are central to projects and can improve their real-world impact (Liddiard et al., 2018). Such approaches can generate insights in lifeworld situations, enhance the democratic potential of social research, and reduce inequalities by facilitating access to learning and employment opportunities and building social capital. It can also enhance the capacity of researchers and build the technical capacity of people with disability in terms of research. As Beresford (2016) notes, people have good insights into their situations and potential solutions, although their perspectives and experiences are also often overlooked as they are not accorded authority and credibility. While university-based researchers (and research funders) continue to debate the merits and challenges of models for co-production research models, the benefits are well recognized by people living with disability and disability activists. They have long demanded the right to be involved in creating knowledge and policies that affect them and it is encapsulated in the dictum nothing about us, without us. To this extent, we sought to uphold the commitments made under the CRPD in our research approach. Our co-production research approach brings these perspectives into the research and combines lived experience

Post-school transition process in a pandemic  709 (‘insider’) and academic (‘outsider’) perspectives to enhance the validity and relevance of research findings. As a team we co-designed the research approach, following the principles set out in the University of New South Wales’ guidelines for co-producing research with people with disability (Disability Innovation Institute of University of New South Wales, 2020). We determined a qualitative approach would be most appropriate in understanding the nuances of experience from a diverse group of individuals. Two methods were initially selected: focus groups and interviews. Focus groups were selected on the basis that they should garner social discourse around issues relating to post-high school transitions (Morgan, 2019). Moreover, these were seen as a more accessible and less intimidating approach providing peer support, particularly for individuals with intellectual disability or cognitive impairments (Riddell et al., 1998). Semi-structured interviews were the second method (Low, 2013). Semi-structured interviews are typically used to gain a detailed picture of a respondent’s beliefs or perceptions of a particular topic area (Smith, 1995). In the project design young people were offered the option of taking part in a focus group or an interview. The research was advertised through CYDA’s networks, via newsletters and social media. Before meeting with young people, HD contacted each individual to check for any adjustments that might be made or any accessibility considerations. Those young people who took part in the research were offered a $50 pre-paid credit card to compensate for their time. Ethics approval was granted by the University of New South Wales Human Research Ethics Committee (HC210197). None of the young people who agreed to take part in the research selected a focus group. In total we undertook eight interviews with young people. In three of these interviews young people elected to be supported by family members, meaning a family member was present and, in some cases, supported responses. The eight respondents were fewer than our initial aim of 15–20 young people. Our challenges in recruitment were a combination of delays in ethics approval and some broader issues. As the research did not start when we anticipated, we missed an important window prior to schools and universities starting back after the break. Interviews were led by the CYDA-based researchers, with the academics supporting and taking notes. All interviews were audio recorded with the permission of participants and were transcribed verbatim. Data were analysed using a thematic approach (Blaikie, 2010). All members of the research team read the interview transcripts and generated a list of themes of interest and relevance to the research questions. The team then met to discuss these themes and to generate a code book. Transcripts were imported into NVivo, and one member of the team (HD) coded the data, with regular verification with other team members. To maintain confidentiality of research participants we have deidentified the data and refer to the young people via a number (e.g., ST001, ST003).

FINDINGS In this section we set out the findings of the research. After briefly reflecting on the characteristics of the young people interviewed, we go on to argue that for many of these it was a challenge to identify the impacts that COVID-19 had on their post-school transition process. Most of the young people reported a difficult time in their transition process, although they were unsurprised by this. For many, schooling had been a constant struggle and they and their

710  Research handbook on disability policy families had to do significant advocacy work to try to ensure they were able to secure the supports they needed. We outline some of the challenges the group reported. We then move on to set out the types of factors that helped in post-school transitions. All but one of the young people we spoke to left school in 2020 and transitioned into an array of destinations. Of those who had already transitioned, two had gone on to study at university, one was in a bridging course into tertiary education, two were in technical and further education (TAFE), one was engaged in a variety of capacity building programmes and work trials, and one was in a School Leaver Employment Supports programme and currently in employment as part of this. The group were mostly based in Victoria (four), with two in New South Wales and one each in Queensland and Canberra. We had a mix of genders with three men, three women and two non-binary/transgender young people. For the purposes of confidentiality, we use the pronoun they/them for all the young people. Interviewees had a range of disabilities including visual impairment, autism, ADHD, genetic diseases, cognitive impairment, psychosocial disability, and Down syndrome. Some individuals reported multiple impairments. Difficulties in Isolating COVID-19 Impacts In this research our interest was the impact the COVID-19 pandemic had on school transitions for students leaving high school in 2020 and 2021. In general, the young people struggled to identify these impacts beyond some broad parameters. To some extent we might expect this, if you have not been through a transition experience before it is difficult to know what to expect, although some young people did have a sense of this from their friends who had been through this process previously. As one interviewee explained: I was quite close friends with the Year 12s that graduated before me, so I knew what the process usually was. But it was completely disrupted by COVID. I ended up getting a completely different experience from what was supposed to happen, and what we were all expecting. (ST001)

Many interviewees identified the pandemic meant typical final year activities had not taken place such as attending university or TAFE open days, work experience, and having access to career counsellors. As one interviewee explained: With the COVID, none of the things that they were supposed to have done in Year 12 occurred, i.e., work experience, going out into public, et cetera. (ST007)

As this quote indicates, schools did not typically have well-developed plans relating to what alternatives might be offered to students. While this was problematic for all students, young people with disability face some specific issues that their non-disabled peers typically do not. For example, for one young person who is visually impaired, this lack of transition preparation was proving problematic as they started university: I think I would have tried to do campus orientation earlier and public transport because I caught public transport to school, all of high school except in Year 12 I didn’t because of COVID. So, I wasn’t practising how to get to university particularly early and it’s only something that has really happened in the last month or two. (ST006)

Post-school transition process in a pandemic  711 The pandemic also meant many young people missed out on ‘rites of passage’ events, including activities such as graduations, end of year celebrations, or trips: Well, the school that I was at takes us on schoolies to Queensland, to the theme park. Obviously because of coronavirus we couldn’t even go. So, I missed out on that and I was devastated. (ST003)

Such events and experiences provide important links to peers and can aid the emotional aspects of transition as they mark the end of schooling. Particularly for young people who feel socially isolated these are often important events in enhancing and maintaining links to their peers. Several interviewees explained they had not necessarily thought in detail about what supports they should have received during the year because COVID-19 had such an impact on their final year of schooling. These young people were typically focused on just managing to get through this disrupted year successfully emotionally and/or academically. For some interviewees, structure is important, and the loss of routine associated with school made this a difficult time. As one interviewee explained: I actually had a panic attack on the first lockdown, so that was scary…at home I didn’t have a routine and that buggered me up. I started raging, I was nearly in the red zone nearly every day … it didn’t feel right, it didn’t work. (ST003)

Several interviewees were actively engaged in processes that would provide adjustments and special considerations for their final assessments. While many would have applied for these regardless of the pandemic, others reported their escalation of anxiety and mental health issues made these more necessary and at the same time processes of documenting this and gathering evidence more challenging. The disruption caused by remote learning meant several of the young people had periods of time where they were unable to learn and for some this caused significant anxiety. Not only was this period a challenge in terms of the impact that this had on the final year of schooling, but for others it was a window into what a first year of post-school study might look like: It was really hard, and I didn’t like it and the thought of maybe I’ll have to do another year in the pandemic at a university, which is far less accessible than my alternative high school didn’t really feel like something I should have to do. (ST002)

In this case the young person changed their plan about where they would transition to, choosing to attend TAFE rather than university, in part, in response to this concern. The More Things Change the More They Stay the Same Most interviewees expressed the opinion that the fact they experienced challenges in relation to schooling and transition processes during the pandemic was not a surprise. They viewed it less as a new set of issues that emerged because of the pandemic and more an intensification of existing challenges. As one interviewee explains: I think it’s just like everything was exacerbated this year, nothing [isn’t a] problem…everything around COVID-19 was an underlying issue that was made worse, not a new thing... Any problem you have, it was there before, it was just more well-hidden. (ST002)

712  Research handbook on disability policy Those who expressed this kind of opinion typically pointed to the fact they had generally not felt well supported in school or that their schools and teachers had not been able to accommodate their needs and differences. Several interviewees shared that they had been bullied at various points in their schooling by other students and in some cases teachers (S = ST004, F = Facilitator): S:

The school don’t care.

F:

Do you feel like the school didn’t care?

S:

Yeah, I dropped out.

F:

Is that the reason you left? Because they weren’t really involved?

S:

Yeah. They didn’t care that I got bullied or choked, or stuff like that.

In this case the interviewee had left before the end of high school as their experience was so bad and had gone to TAFE for further study. But they had not been able to study the course of their choice as they were under 18, so had done a different course for a year until they could meet the age requirement. Most interviewees had some form of transitions support prior to their final year of study, having done some work on this in Year 9. However, in the majority of cases this was a generic course of activities based around things like creating CVs and perhaps investigating some potential future careers. But interviewees also explained this course was typically generic, with the full year group taking part and there was little tailoring or adjustment to take into consideration the impact that disability might have for some students. Others explained their schools had limited resources to support students with disability and this sometimes meant they would miss out on these if they did not meet criteria. While there were reports of some individual proactive and supportive teachers, they were not the norm for most. One of our interviewees explained how this felt and the implications of not being supported: My school has about 1200 students, and there were probably three teaching aides for the entire school. They were stretched between maybe a group of half a dozen students, and they were students with very high complex needs. For someone like me … considered high-functioning, I wasn’t looked at as a priority, so I didn’t receive any support…. I have to write a specific way. I can’t break outside of my routine of how I write. I ended up having a full meltdown during class over it. I was disciplined, instead of supported. I was given a detention for disrupting the class, which wasn’t fun … I understand, because it was a disruptive meltdown, I was crying and whatnot. But it was seen as, and quite often was, as a disruption, instead of something to be supported. (ST001)

Several young people reported at various points in their school career being disciplined as in this case or seen as a disruptive force when feeling overloaded or unable to cope with tasks or classroom dynamics. Such occasions served to impact whether schools and teachers were trusted as advisers or supports. Given the diverse group of young people we interviewed, they had experienced a range of different transition-related issues. One of our interviewees with a visual impairment reported experiencing a significant cliff at the end of schooling as they were no longer able to keep the

Post-school transition process in a pandemic  713 technology that had been provided during schooling. These technologies are not funded under the National Disability Insurance Scheme (NDIS), meaning they were potentially left without the equipment they needed to prepare for and learn at university. In this case a not-for-profit organization helped them to navigate this gap, rather than the school working with them to plan for this: The big one for people with vision impairments … while you’re at school … all of your technology is provided by the Department of Education. So, things like laptops that can have screen readers put on to them … and all of these things are really expensive, like accessibility technology tends to be. So, it can rack up to about $10,000 worth of stuff that was owned by the Department of Education but I’ve been using it for the entire year of my studies. The thing that wasn’t supported I guess was information on pathways of how to get funding or support to get this accessibility equipment if you were moving into tertiary study. I think it’s because it’s expected if you have low vision, you won’t be going on to do tertiary education because lots of people expect us to be not particularly smart for some reason. (ST006)

Although this young person had done well in school and had been offered a place to study law at a top university, they were facing the prospect of doing this without the equipment that had supported their learning. As they explained, in part this was because there are not always high expectations of what young people with disability might achieve. Several interviewees told us they often felt there were not high expectations of this group and this was problematic as it made individuals internalize this and narrow considerations of what they might do after school. One interviewee explained: it’s like okay you should be grateful you got a job at like Hungry Jacks [burger chain], which there’s nothing wrong with that but they’re deciding what someone’s potential is ... because we’re less capable and less worthy of work. It’s so drilled into society … so of course they’re not going to want us to have high expectations for ourselves. (ST002)

If schools do not expect young people with disability to go on and do the type of things their peers might, they will not put the appropriate supports in place to support this shift or indeed push young people to achieve. Several young people told us their schools did not set learning activities during pandemic remote learning as their academic performance was seen to count less than that of some of their peers. Others talked about not being supported to take risks as they did not feel like they were being allowed to fail. One interviewee spoke about their desire to become an educational support worker and they had previously done work experience in this area. However, in going to further study they had been strongly encouraged to go into a work education course, a bridging course into tertiary education. In the interview they expressed the opinion they had not been allowed to take what they perceived as a risk and go into the course of their choosing because of their disability: I was going to go into education support, that’s teacher’s aide ... I’ve done a placement in a primary school. I said that’s where I want to be, that’s my place in life … I just want to go straight into education support, see how I go. If I fail, I fail. But if I excel, I excel and get a good job. (ST003)

Again, this is an issue of risk management and in this case not allowing someone to take a risk for fear that they might fail. Yet all of us take risks and these do not always succeed, but stu-

714  Research handbook on disability policy dents with disability report they were less supported to take risks than their peers. In turn, this prevents what could be important learning opportunities. Others spoke about systems that would make accommodations for them and their needs, but only once they had provided extensive evidence to support this case. In school, in university and to access the NDIS, the onus was continually on the young person to provide evidence to prove their case. But this comes at a cost in terms of the time and resources it takes to undertake paperwork and to be able to access specialists. Several interviewees referred to the idea of the ‘disability tax’ where they encountered costs associated with garnering supports. In one case having secured the evidence it got lost in the system and they were asked to get these again: I needed to supply evidence from my specialists. Yet again, specialists are really hard to get into … that took about a month to get that evidence, and my specialist had sent that to [University], but [University] cannot find it. Cannot find any of the evidence that was sent in, so I have to redo the process, and I just don’t – one, I can’t get in to see my specialists, and two, I don’t have the energy … I understand why they need the evidence … if it was possible that I could go to see my GP, who has the files collated from all of my specialists, who could just relay the notes, that would be … easy as. But the process of having to get specialist evidence is incredibly hard ... it’s not as easy as ringing up and saying, can you fill this form out for me? It’s the timeframes they give you, it’s the fact that they need as much evidence as you can. (ST001)

While supports were theoretically available, they often proved difficult to gain access to and there was additional work to find these. Given most of the young people we interviewed had lived with disability their whole school careers, the fact that they had to access evidence in the final year of schooling and during a pandemic provided additional stressors. Overall, most of the young people we interviewed spoke about being let down by schools and broader support systems on multiple occasions and not having a positive experience of transition from school into the post-school environment. What was more striking was most were not surprised by this, they expected times of transition or new activities or events to be turbulent as this had been their experience for their whole life. As one young person explained this is because the system is not designed with people with disability or any individual who deviates from the ‘norm’ in mind: School transitions ‘intentionally’ is not actually about transitions, it’s about one person moving from one system to another system but nothing else. Like it is a cis, white, rich, abled student moving from a mainstream high school to a public, prestigious university and that’s it … you’re radical if you do anything other than that. The reality of transitions is not actually transitions. I think that’s a narrative … that favours white people, favours able people and favours cishet rich people. (ST002)

Several of the young people we spoke to feel the weight of intersectional identities. Interviewees referred at several points to the issues associated with variously: being gender diverse, being the first in the family to go to university, living in a regional area, being from a low socio-economic group, and not living with parents due to safety concerns. All these factors have a bearing on transition points and pose additional challenges in planning and yet also were not always acknowledged.

Post-school transition process in a pandemic  715 What Helps in Post-School Transitions Individual teachers were identified as being good supports for some of the young people we interviewed, but schools were largely not seen to have been very helpful in supporting post-school intentions. As outlined in the previous section, many of those we spoke to did not have expectations they would be well supported as they often had to engage in significant work to make things happen around schooling. To fill this gap there was a lot of advocacy work done by individuals, peers, and families to support these processes. For many of the young people we spoke to, they had done extensive work to make sure that they got to transition to where they wanted to and secured the supports they needed to do this. As one person explained: I’m the first in my family to go to university, so I didn’t have that social capital, where I could rely on family members for what to expect ... A lot of late nights, frantically searching … it was trial and error, frantic researching and pretty much just waiting and hoping that it would work out. (ST001)

Several people talked about how they had done a lot of work with schools, with further education institutions, the NDIS, not-for-profits, and advocacy organizations to help them identify where they would transition to, the supports they would require, and how to secure these. Some young people and their supporters described how they did extensive preparation work in advance. As one carer explains: So we would talk about it at home. How much went on at school, I’m unaware of that. I’d already researched what job opportunities there were because I knew that that was coming in and used resources like Imagine More …. Then I looked at job agencies, what was available, et cetera, and even rang and spoke to parents and then went, well, okay, we will do this … it was more me advocating and knowing what had to be happening and what steps I needed to put in place and going ahead and getting that done. I worked with an amazing agency here that helped us along the way and have supported [name] for a quite a lot of years …. Did they do any of that at school? Just – I think I attended two meetings; one was to talk about SLES funding and one was to talk about what we needed to do into the future. So I arranged tax file numbers and all of those sorts of things, which in other schools, that was all done by the guidance officer and that was part of Year 12 to make sure all of those things were done. (ST007)

Other young people highlighted their parents had played important roles in helping to shape their post-high school ambitions: It really mostly came from mum. I mean she suggested it to me, she was like, oh there’s this thing that I’ve been thinking of doing, what do you think? I was like, yeah that sounds great, but it mostly came from her. (ST005)

In this case, the young person had secured a job coach using funds from the NDIS and had also been through a discovery process supported by a not-for-profit organization. While the school had provided some work experience, the job coach and discovery process had been secured through parental advocacy work. The discovery process was described as particularly helpful as it worked in a strengths-based way to find different paths that would work with the skills and interests of the young person:

716  Research handbook on disability policy during the discovery meeting people came up with so many ideas that I hadn’t even considered doing or thought …. It opened my eyes to so many other possibilities of things that I could do when I finished that I hadn’t even thought of. It just made me feel really confident, like I have all these cool things that I can do. It made me feel very hopeful and excited for finishing school, which was not what I originally felt. (ST005)

Not only was this a way of identifying activities and pathways that might work for this young person, but it also built their confidence. It started from a sense of what they could do, rather than with what they could not, which had often been the experience in interacting with the school.

DISCUSSION AND CONCLUSIONS We found that for this group of young people school transitions were not well supported. However, this project is not without limitations. An important one is that we recruited a small sample and our findings are not representative of all young people who transitioned from high school over this time period. However, these trends do accord with those found in the wider literature so we have good reason to believe many young people with disability will have experienced similar issues. The COVID-19 pandemic had an impact for all young people leaving school in 2020 and 2021. But we would argue that from our sample, the issues faced are heightened for people with disability. Studies have clearly demonstrated that most young people with disability have experienced a greater range of challenges in schooling during the pandemic (Yates and Dickinson, 2021; Yates et al., 2021). This meant the final year of schooling for interviewees was significantly disrupted and issues of transition support were not prioritized. Schools did not fill gaps and in many cases left students with disability to navigate systems on their own rather than prioritizing this group. This is problematic given disparate rates of employment and economic participation for people with disability when compared to their peers. It is crucial that school transitions are supported in a range of ways to ensure their success. Young people need to be supported to identify the types of activities they enjoy taking part in and where their strengths are. Supporting such an asset-based process can build confidence (Wehmeyer, 2013). Most interviewees felt as though the focus was often on their deficits, things they could not do, behaviours that were not encouraged, and if they wanted support they had to go and document these through a range of professionals. This deficit thinking was linked to experiences of low expectations and the resultant lack of opportunities for future or career planning. Supported decision-making processes may be a way to help some individuals identify and realize their aspirations. One of the young people in our sample had been through a discovery and supported decision-making process and reported this was incredibly helpful in realizing their strengths and what they wanted to do in the future. All young people need support around various practical elements of transition processes (Rowe et al., 2020; Haber et al., 2016); however, participants who were transitioning into other education settings gave a number of examples of support that was needed and not provided such as: how to catch transport and navigate an unfamiliar campus if you are visually impaired, how to apply for university, scholarships, and grants or gain access to assistive technologies. While these can be challenges for many young people, those with disability face many more challenges and must navigate across multiple organizational and institutional barriers to

Post-school transition process in a pandemic  717 achieve successful transitions. In crisis situations the temptation can be to see the many issues these young people face as being too difficult or complex, but arguably it is here that schools and other public agencies should focus. Not all young people transition into education and people with disability face significant discrimination in finding and securing appropriate employment (Perri et al., 2021). The longer individuals are out of work, education, or training, the more difficult it is to secure employment (Ellenkamp et al., 2016; Vuolo et al., 2014). Moreover, the negative effects of unemployment are felt more by people with disability given the range of socio-economic disparities faced (Vancea and Utzet, 2017). There is a danger that if we do not appropriately support post-high school transitions for people with disability that they will not be afforded a chance to achieve economic and/or community participation. Supports are needed to transition that are not simply physical in nature, but also emotional. Successful transitions require attention to relational aspects of these change processes and these were often lost in the shift to remote learning. Attending to the social and emotional well-being of young people can be a protective factor in supporting transitions processes (Dickinson et al., 2020). Capacity building was identified by participants as essential for learning to cope and seek help as they felt they were often disciplined or socially isolated for perceived inappropriate behaviour when they were feeling overwhelmed or stressed. These are skills that are required for success in future endeavours in further education or the workplace (Engelbrecht et al., 2017). All those we interviewed transitioned from school into work, further study, or programmes and one will later in the year. But for most this had been a challenging time and they and their families and supporters had to do extensive work to support these processes. Having some supportive teachers and family, drawing on specialist advocacy organizations, and engaging job coaches were some of the things that supported better aspects of transition processes. In addition to these, policy, support structures, education and training, individual and societal attitude shifts, self-determination, and enabling environments are crucial factors in successful transitions (Marsay, 2014). Individualized support with insight into functional needs, decision making, options, aspirations, and temporal goal setting were all identified as possible augmentations which would have improved young people’s experiences. While carers and parents will also be involved in communication, agency and choice should be secured with the young person (Rowe et al., 2020). Our participants identified the usefulness of their social networks in providing information and support. Mapping social networks and supports can be a helpful exercise when working with young people in transitions, as in addition to identifying support and help seeking strategies, it can also help to identify additional interests and pathways to programmes or employment (Rowe et al., 2020). If Australia is to realize its human rights commitments around economic and community participation under the CRPD it is essential that crucial transition times, such as leaving high school, are appropriately supported. While our sample for this research was small, we recruited a diverse group although all faced several similar types of challenges in their journeys. COVID-19 is unlikely to be the last challenge that the country faces and there need to be more effective plans in place to ensure that this does not happen again.

718  Research handbook on disability policy

NOTE 1.

Start of endnote. The authors would like to acknowledge the support of Children and Young People with Disability Australia in supporting this research, particularly Mary Sayers and Tasha Ritchie. We would also like to acknowledge the young people who took part in the research. End of endnote.

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720  Research handbook on disability policy Yates, S. & Dickinson, H. 2021. Navigating complexity in a global pandemic: The effects of COVID-19 on children and young people with disability and their families in Australia. Public Administration Review, 81(6), 1192–1196. Yates, S., Dickinson, H., Smith, S. & Tani, M. 2021. Flexibility in individual funding schemes: How well did Australia’s National Disability Scheme support remote learning for students with disability during COVID-19? Social Policy & Administration, 55(5), 906–920.

61. The right to work “on an equal basis with others”: examining disability employment policies in Australia through the lens of a health and economic crisis Sue Olney and Alexandra Devine

INTRODUCTION Access to ‘decent work’ is a globally recognized characteristic of fair, just and democratic societies (ILO 2015). At the United Nations General Assembly in September 2015, the four pillars of the Decent Work Agenda – employment creation, social protection, rights at work and social dialogue – became integral elements of the 2030 Agenda for Sustainable Development (ILO 2015). Aspects are embedded in various International Labour Organization and UN goals addressing poverty, inequality and disability, including Sustainable Development Goal 8, Target 8.5: “By 2030, achieve full and productive employment and decent work for all women and men, including for young people and persons with disabilities, and equal pay for work of equal value” (UN 2021). In the UN Convention on the Rights of Persons with Disabilities, Article 27 calls on signatories to recognize “the right of persons with disabilities to work, on an equal basis with others” and specifies that this right should be actively supported by legislation and other action to prohibit discrimination on the basis of disability in preparing for work, looking for work, recruitment, employment, remuneration, career advancement, working conditions or in starting a business (UN 2006). As one of the original signatories to the Convention in 2008, Australia accepted that obligation (Australian Law Reform Commission 2013:19). Yet through nearly three decades of uninterrupted economic growth between 1991 and 2020, the employment rate of Australians with disability remained persistently and significantly lower than the rate for Australians without disability (ABS 2018). Why and how has this gap persisted through changes of government, changes to legislation and changes in policy? Australia’s stated commitment to narrowing it is backed by robust evidence of the private benefits of employment for people with disability, and equally robust evidence of its public benefits (ILO & OECD 2018; Productivity Commission 2011; Deloitte Access Economics 2011; AHRC 2016; WHO & The World Bank 2011; UN 2006). There is also clear evidence that Australians with disability want to work (AHRC 2016). Despite this, a range of targeted incentives, initiatives and investment intended to smooth their pathways to work – underpinned by both rights-based and economic arguments – have failed to boost their labour force participation rate in a generation. Internationally, Australia ranks 21 out of 29 among OECD countries on that measure (NDIS 2018:4), although the OECD has acknowledged that data inconsistencies can skew international comparisons (ILO & OECD 2018:2). Within Australia, however, the ongoing gap in labour force participation between people with and without disability is indisputable and it has significant implications as the COVID-19 pandemic disrupts and reshapes Australia’s labour market. 721

722  Research handbook on disability policy Although Australia has largely – to date – escaped its worst effects, the health and economic fallout of the COVID-19 pandemic is likely to compound the disadvantage experienced by many people with disability in the labour market (ILO 2020; Jones 2021). This chapter explores risks stemming from Australia’s lacklustre attempts to help people with disability find and keep work in the years leading up to the pandemic, in the context of what lies ahead. It examines trends in disability employment, related policy shifts, relationships between policy actors, the economic case for radical reform of disability services over the last decade, internal and external challenges facing governments in assisting people with disability to find and sustain meaningful employment, and emerging opportunities and imperatives to address labour market disadvantage. Concerted effort and grounded strategies are needed, now more than ever, to ensure Australians with disability are not sidelined in the post-pandemic labour force and that ground gained in remote and flexible working conditions during the pandemic is not lost. The private and public costs of inaction on that front would be long-lasting and far-reaching.

DISABILITY AND THE LABOUR FORCE IN AUSTRALIA The labour force participation rate is the number of people currently employed or actively looking for paid employment divided by the total working-age population – people aged 15 to 64. In 2018, 2.1 million Australians with disability were of working age. Of those, 53.4 per cent (1.1 million) were participating in the labour force – employed or actively looking for work – compared with 84.1 per cent of people aged 15–64 years without disability. Overall, 47.8 per cent of people with disability of working age were employed, compared with 80.3 per cent of people without disability (ABS 2020; Figure 61.1). What is more concerning is that this gap has persisted for decades, through legislative and policy changes, economic and demographic shifts, changes in the nature and conditions of employment, and changes in welfare conditionality. Over 25 years from 1993 to 2018, the proportion of people with disability of working age in Australia’s labour force fluctuated by just two per cent – between 55 per cent and 53 per cent – and ultimately fell from 55 per cent to 53.4 per cent overall (Figure 61.2). This period encompassed a range of inquiries and reforms that, in theory, should have increased this rate, including a National Inquiry on Employment and Disability by the Australian Human Rights Commission (AHRC 2005); Australia ratifying the UN Convention on the Rights of Persons with Disabilities (UN 2006); the introduction of targeted Disability Employment Services (DES) in 2010, with the express aim of increasing the participation of people with disability in the labour force (Parliament of Australia 2011:5); and radical reform of disability services and support under the National Disability Insurance Scheme Act in 2013 (Australian Government 2013). Over the same timeframe, the labour force participation rate for people without disability rose from 76.9 per cent to 84.1 per cent (ABS 2012, 2020). In 2018, the unemployment rate for Australians with disability was 10 per cent, more than double the 4.6 per cent unemployment rate for those without disability (AIHW 2020). Employment outcomes differ between disability types. The 2018 Australian Survey of Disability, Ageing and Carers (SDAC) revealed that of people with disability, those with sensory and speech disabilities were most likely to be participating in the labour force (54.6%), while people with psychosocial disabilities, or with head injury, stroke or acquired brain

The right to work “on an equal basis with others”  723

Source: ABS (2020).

Figure 61.1

Comparison of labour force participation and employment of Australians aged 15‒64 years with and without disability in 2018

Source: ABS (2003, 2012, 2015, 2020).

Figure 61.2

Labour force participation of Australians with disability aged 15‒64 1993‒2018

724  Research handbook on disability policy injury, were least likely to participate in the labour force (33.5% and 31.7% respectively). People with sensory and speech disabilities were also most likely to be employed (49.9%) followed by people with physical disabilities (43.7%). In contrast, 32 per cent of people with intellectual disabilities in the labour force are employed, and 25.7 per cent of people with psychosocial disabilities (ABS 2020). Gender also plays a role in disability outcomes with men with disability more likely than women to be participating in the labour force (56.1% versus 50.7%) and employed (49.9% versus 45.9%). Employed women with disability are also more likely to be underemployed when compared to employed males (5.9% versus 3.9%). The severity of disability also influences outcomes, with those with more profound or severe disability less likely to be in the labour force compared with people with mild or moderate disability (27.2% versus 55.0%). Males with profound disability were more likely to be in the labour force than their female counterparts (31.0% versus 23.6%). Yet of those in the labour force, women with profound or severe disability were more likely to be employed than their male counterparts (95.4% versus 85.3%) (ABS 2020). Differences within the labour market also exist with people with disability more likely to be employed as labourers (12.3% versus 8.8% of those without disability) and less likely to be working as managers (10.8% versus 12.5%). While the proportion of people with disability working within the Australian public sector has declined from 6.8 per cent in 1986 to 4.0 per cent in 2020 (against a target of 7.0% by 2025), people with disability are still more likely to be working in the government sector over the private sector (17.7% versus 15.8%) (ABS 2018, 2020). The 2015 SDAC reported that the weekly median income of people with disability was less than half that of those without disability ($465 versus $950) (ABS 2015). The 2018 SDAC revealed employees with disability were less likely to report their main source of personal income as wages or salary compared to employees without disability (78.2% versus 88.2%), and were more likely to live in households with lower household incomes (8.8% in the lowest quintile versus 4.4% for employees without disability) (ABS 2020). This may in part be explained by the additional costs of living with disability in general, alongside the further costs many workers with disability incur in relation to their work (Mitra et al. 2017; Vu et al. 2020). For example, while some people with disability have access to subsidized transport, others experience considerable out-of-pocket costs in getting to and from work. The position of people with disability relative to those without disability in the Australian labour market was a policy problem long before COVID-19 was on the horizon. Their relative labour market disadvantage persisted despite widespread willingness to work among people with disability, and a shift to a more service-oriented economy which the Productivity Commission contended should have expanded their employment options (Productivity Commission 2011:961). Tightening eligibility criteria for the Disability Support Pension and increasing the qualifying age for the Age Pension moved people with limited capacity to work into the ranks of the unemployed (AIHW 2020), and the number of people with disability compulsorily engaged in mainstream employment services with mutual obligation requirements continues to rise (Australian Government 2021a). Persistently poor employment outcomes for those jobseekers raise serious questions about the transparency and rigour of processes for assessing and addressing their barriers to work, and the government’s duty of care in attaching punitive conditions to their income support (Olney 2016). Research suggests the socio-economic and mental health benefits of employment versus unemployment for people with disability may be more significant than for people without disability (Milner et al. 2014; DRC 2020). The flow-on effects of unemployment – social

The right to work “on an equal basis with others”  725 exclusion, economic disadvantage, poor mental and physical health, housing insecurity – can be exacerbated and compounded by pre-existing socio-economic disadvantage. However, not all forms of employment lift people out of poverty and marginalization. Assisting people with disability to find paid work is just one aspect of addressing inequalities in employment outcomes. Increasing focus should be placed on access to decent work – work which is “productive and delivers fair income, security in the workplace and social protection for families, better prospects for personal development and social integration” (ILO 2015). Within this is a greater focus on psychosocial job quality. Compared to workers without disability, those with disability are more likely to report poorer psychosocial working conditions, such as low job control, high demands, high insecurity and low fairness of pay (Milner et al. 2014). Not only does this have a negative impact on mental health, but it reduces the likelihood that people will remain in employment (Milner et al. 2014). The Improving Disability Employment Study (IDES) highlighted that the structural barrier to employment most reported by people with disability is the limited supply of jobs that meet their diverse needs, capabilities and aspirations. For example, 40.8 per cent of respondents to the IDES survey reported that the lack of available jobs greatly impacted on their ability to find and maintain employment, with 30 per cent reporting this as the most common barrier to employment (Dimov et al. 2019; CRE-DH 2020). Similarly, a study on the transition from vocational education and training to employment in NSW found that there were very poor job markets for people with disability, particularly in rural and regional areas. That study concluded that the bar is set too low for people with disability, where any job, rather than a career, is the goal (Buchanan et al. 2020). At the end of March 2021, the caseload of Australia’s mainstream employment services system, jobactive, exceeded 1.2 million jobseekers (Australian Government 2021a), and the Disability Employment Services (DES) caseload exceeded 300,000 (Australian Government 2021b). The combined total outnumbered advertised job vacancies by a factor of five (ABS 2021). As this health and economic crisis plays out, some of these jobseekers will be drawn into new industries, different types of employment and new ways of participating in the economy. However, research and numerous government inquiries reveal that even in times of skill and labour shortages, with support and incentives available to potential employers, people with disability have still struggled to find and maintain decent work (National People with Disabilities and Carers Council & Department of Families, Housing, Community Services and Indigenous Affairs 2009; AHRC 2016; Parliament of Australia 2019; DRC 2020; Department of Social Services 2021b). In part, this can be attributed to employment services not being adequately resourced or empowered to address systemic barriers to work faced by people with disability or to adequately support employers lacking understanding of disability; and in part, to perverse incentives in employment services’ outcomes-based funding models for providers to focus their attention on jobseekers most likely to be employed quickly (Olney 2016). In the shifting COVID-19 labour market, the capacity of people with disability to compete with more jobseekers for available work is hampered by long-standing discrimination and new health and economic vulnerabilities (Friel & Demaio, 2020; O’Sullivan et al. 2020; ILO 2020). An additional risk is the potential longer-term impact of COVID-19 on the future employability of people whose existing disability is exacerbated by lockdowns and changed routines; people who will be forced to self-isolate until vaccination is widespread because of the high risk of infection due to a chronic health condition; and people who experience lasting physical or psychological effects of the pandemic or ‘long COVID’ (PHOSP-COVID Collaborative

726  Research handbook on disability policy Group 2022). Without employment, these people are likely to enter and remain in the welfare system. The potential loss of health concessions is an identified work disincentive in the structure of Australia’s Disability Support Pension (Productivity Commission 2011:284, 972), as well as other forms of income support, and this may be exacerbated by new health risks faced by people with disability. All Australians have access to basic healthcare through Medicare – the country’s universal healthcare programme – without means testing. However, particular challenges faced by people with disability in accessing quality health and rehabilitation services – such as inaccessible infrastructure, discrimination in healthcare, out-of-pocket expenses, or long wait times for referrals – can result in significant unmet health needs, which in turn can compound disability-related barriers to work and pressure on disability-related services (AIHW 2020). The Australian Government continues to frame the persistent unemployment of people with disability as a problem that can be solved by adjusting the skills, attitudes and behaviour of individual actors – jobseekers, their families, service providers, employers, people in the community – in the face of labour market conditions shaped by economic policy, global forces, health risks and technological change. Redressing the persistent and now compounding labour market disadvantage of people with disability in Australia calls for new levers and strategies.

DISABILITY AND WORK IN AUSTRALIA: THE POLICY LANDSCAPE As discussed above, Article 27 of the Convention on the Rights of Persons with Disabilities calls on signatories to ensure that people with disability are encouraged and supported to enter the labour market and to find sustainable and meaningful employment (UN 2006). Australia’s progress towards that aim is important not only on the basis of upholding the right of people with disability to work, but because doing so will build a stronger and more inclusive society and economy (NDIS 2019). The economic impact of people being excluded from the labour market includes public spending on income support and flow-on pressure on other public services like health, housing and justice; the opportunity cost of that spending; the loss of those citizens’ potential contribution to the economy as taxpayers, consumers and producers of goods and services; and deterioration of their talents, skills and motivation to work (OECD 2020). Compounding that, the consequences of income inequality and social exclusion adversely affect people’s health and wellbeing and generate social costs that ripple across government and society (Wilkinson & Pickett 2009; OECD 2010, 2020). In 2011, economic modelling by Deloitte Access Economics suggested that closing the gap between labour market participation rates and unemployment rates for people with and without disabilities by one-third would result in a cumulative $43 billion increase in Australia’s GDP over the next decade in real dollar terms (Deloitte Access Economics 2011). Simultaneously, the Productivity Commission posed a strong economic case for creating the National Disability Insurance Scheme (NDIS) based on calculations that the benefits of the scheme would significantly outweigh its costs in the long term (Productivity Commission 2011:2). The Commission’s cost/benefit analysis included lengthy discussion of the public and private benefits of drawing more people with disability into the labour force (Productivity Commission 2011:958–965). It estimated that if Australia were to reach the average OECD relative employment rate for people with mild to profound disabilities, employment would rise

The right to work “on an equal basis with others”  727 by 100,000 people by 2050, which in turn would increase Australia’s GDP by 0.2 percentage points, or $8 billion. However, it also noted that Australia could “do better than the OECD average in terms of employing people with mild to profound core activity disabilities” based on the strong growth prospects of the economy and the economy’s orientation to service and knowledge work, which was seen as suited to people with disability (Productivity Commission 2011:961). With hindsight, it was a bold call. Progress on that front – especially for NDIS participants – was disappointing even before the unexpected disruption of COVID-19 (Productivity Commission 2017:138–148; NDIS 2018). In June 2018, the percentage of active NDIS plans with a work-related goal was 44 per cent for participants aged 15–24 and just 26 per cent for participants aged 25 or over (NDIS 2018:18). In the same period, there was a 3 per cent increase in the percentage of participants aged 15–24 years old who reported that they were in paid work between entry to the scheme and review approximately one year later – from 15 per cent to 18 per cent – but a one per cent drop in the percentage of participants aged 25 and over in paid work – from 25 per cent to 24 per cent (NDIS 2018:23). More recently, the overall employment rate of NDIS participants hovers around 23 per cent, while for younger participants (15–24 years) it sits at 19 per cent, well below the National Disability Insurance Agency’s target of 30 per cent of participants in work by 2023 (NDIS 2021:36). This is despite an estimated $250 million per annum going towards services providing employment interventions to participants within the NDIS market (NDIS 2021). In 2021, the key players funded by the Australian Government to boost the participation of people with disability in the workforce are DES, Australian Disability Enterprises (ADEs), the NDIS and jobactive. The DES Programme, the main government-funded programme for supporting people with disability into work, has transitioned over time from being delivered directly by government to a government-contracted quasi-market of for-profit and non-profit providers (Devine et al. 2019). Over 100 DES providers are contracted by the Department of Social Services to actively support, monitor and promote the participation in the labour market of approximately 300,000 people with disability in receipt of income support, and a smaller proportion of voluntary clients, with Grant Agreements in place until June 2023 (Department of Social Services 2018). A mid-term review of the programme, conducted between May and August 2020, informed adjustments to the programme announced in the 2020–21 and 2021–22 federal budgets, such as giving people with disability who are eligible for Disability Employment Services and are job-ready the option to access employment services and to manage their job search and reporting requirements through the mainstream online employment services platform (Budget 2021–22). There are also 20,000 people with disability employed in ADEs, which are traditionally not-for-profit organizations offering targeted employment opportunities to people with moderate to severe disability. Most of these employees receive a ‘pro rata’ wage – a percentage of the minimum pay rate for their classification, depending on assessment of their work capacity carried out by a qualified independent assessor. Funding for employment in ADEs transitioned from the Disability Employment Assistance programme in the Department of Social Services to the NDIS in 2020 (Department of Social Services 2019). Corresponding changes to the pricing model for core funded employment supports provide scope for NDIS participants to use these supports in a wider range of employment settings, which may signal the end of the dichotomy between jobs open to all people (open employment) and jobs designed for people with disability in a supported setting (supported employment) (NDIS 2020). More broadly, the NDIS has committed to “enable 30 per cent of

728  Research handbook on disability policy participants of working age to be in paid work by 30 June 2023” – 150,000 people with permanent and significant disability – by promoting pathways to employment with information and interventions through its Participant Employment Strategy (NDIS 2019:12). Finally, there are now over a quarter of a million jobseekers with disability engaged in Australia’s mainstream employment services (Australian Government 2021a). Alongside these key policy levers, a number of targeted labour market programmes funded by federal, state and territory government departments also focus on increasing employment opportunities for people with disability (for example, Jobs Victoria 2020). Work experience, and transitions from education to employment, remain complex terrain to navigate. Research by the Centre of Research Excellence in Disability and Health using data from the Household, Income and Labour Dynamics in Australia (HILDA) Survey showed that unemployment inequalities between young people aged 15–24 with and without disability increased over the period 2001 to 2018. In 2018, young people with disability were more likely to be unemployed than were their non-disabled peers and less likely to have an educational attainment of at least Year 12 or Certificate 2 (60% vs 72%). Furthermore, only 56 per cent of young people with disability were engaged in full-time work or study, compared with 78 per cent of their non-disabled peers, with young people with disability more likely to be unemployed in comparison to their non-disabled peers (26% vs 10%) (Fortune et al. 2021). As competition for entry-level employment ramps up, early exclusion from education and employment for young people with disability may have lifelong consequences. As evidenced by the 2018 SDAC, even when people with disability attain similar levels of education as their non-disabled peers,

Source: ABS (2020).

Figure 61.3

Labour force participation by educational attainment

The right to work “on an equal basis with others”  729 gaps in employment outcomes persist. As shown in Figure 61.3 below, only 62.2 per cent of people with disability with a Bachelor’s degree or equivalent are in the labour force, compared to 87.7 per cent of those without disability. This gap widens with lower levels of educational attainment (ABS 2020). Simultaneously, several intersecting policy components impacting on employment outcomes for people with disability are in a state of flux or have been reviewed during the pandemic. Australia’s Disability Strategy 2021–2031, which guides activity and investment across all areas of public policy and mainstream services and systems to improve outcomes for people with disability, replaced the National Disability Strategy 2010–2020 (Department of Social Services 2021a). A complementary ten-year national Disability Employment Strategy – Employ My Ability – was developed alongside it (Department of Social Services 2021b). The development of both strategies involved wide-ranging public consultation during the pandemic. Across federal and state government jurisdictions, the Council of Australian Governments, which developed principles for interactions between the NDIS and education and employment services (Council of Australian Governments 2015), was replaced in May 2020 by a National Federation Reform Council charged with responding to the health and economic effects of the COVID-19 pandemic (Department of the Prime Minister and Cabinet 2020); simultaneously, Disability Reform Ministers’ Meetings replaced the Disability Reform Council as the platform for Commonwealth and state and territory ministers to drive national disability policy implementation, including through the Disability Strategy and the NDIS. In a further effort to align national disability policies and programmes, responsibility for the Information Linkages and Capacity Building (ILC) programme, which includes Economic and Community Participation grants focused on improving pathways to employment and increasing participation by people with disability, transferred from the National Disability Insurance Agency to the Department of Social Services in October 2020 (Department of Social Services 2022). In addition, the experiences of people with disability in employment have been carefully scrutinized by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (DRC 2020). The disability employment policy landscape is summarized in Table 61.1 below. This fragmented policy landscape poses governance challenges in ensuring people with disability can find and sustain meaningful employment, and in mobilizing resources and effort to seize emerging opportunities to improve their employment prospects at scale. Table 61.1

The disability employment policy landscape

Level of government Jurisdictions Federal Social Services Education, Skills & Employment

State and territory Agencies

Policies Disability Employment Services (DES) Australian Disability Enterprises (ADEs) Australia’s Disability Strategy 2021–2031 Employ My Ability: Disability Employment Strategy jobactive Information Linkages and Capacity Building (ILC) Economic and Community Participation grants Education & Training VET Human Services Transitional Labour Market Programmes Employment School-based Transition to Work Programmes National Disability NDIS Participant Employment Strategy Insurance Agency

730  Research handbook on disability policy

GOVERNANCE CHALLENGES Structural weaknesses in the architecture of pathways into and through work for people with disability have contributed to their poor employment outcomes in the past and left Australia ill-equipped to manage the fallout of COVID-19 on their employment prospects. There are consistent messages around the importance of concerted effort in the NDIS Participant Employment Strategy (NDIS 2019), the mid-term review of the DES Programme (Boston Consulting Group 2020), and the Disability Employment Strategy (Department of Social Services 2021b), but none are easy to operationalize in a policy environment of diffused accountability, competing priorities, service gaps, inconsistent criteria and blurred lines of responsibility across jurisdictions and institutional boundaries. Related issues flagged in the NDIS Participant Employment Strategy include overly complex legislative and policy frameworks; perceived disincentives in the income support system; government programmes not working well together; and a “lack of suitable transition supports, for example, leaving school or changing jobs” (NDIS 2019:6). The mid-term review of the DES Programme identified insufficient flexibility to allow innovation; excessive complexity and lack of clarity; ineffective market mechanisms; and poor alignment with adjacent programmes as key challenges facing the programme (Boston Consulting Group 2020:5–6). The priority areas set out in the Disability Employment Strategy include improving systems and services “[m]aking it simpler for job seekers with disability and employers to navigate and utilize services, and driving better performance from service providers” (Department of Social Services 2021b:21). Barriers to employment are often complex, multifaceted and cumulative: intertwining individual-level socio-demographic characteristics (e.g., type and severity of disability, age, economic status), vocational barriers (e.g., limited education, skills and/or work experience), and non-vocational barriers (e.g., poor mental health, homelessness, financial difficulties), with structural (e.g., limited supply of jobs) and situational barriers (e.g., limited confidence of employers) to gaining and maintaining work that occur across a person’s lifetime. Yet a common thread across the intersecting barriers to employment is discrimination. Limited understanding of disability and stigma often contribute to exclusion and barriers to participation across life domains that are critical to the career development and employment outcomes of people with disability (Carroll et al. 2016; Hatzenbuehler et al. 2013). Furthermore, the type of discrimination faced by people with disability can vary according to their type of disability (AIHW 2020; Bollier et al. 2021). Many of the barriers to education, for example, are associated with stigmatizing attitudes, such as low societal expectations (Carroll et al. 2016; Drew et al. 2011; Hatzenbuehler et al. 2013). For example, a recent Australian survey of community attitudes towards people with disability found 13 per cent of respondents agreed that students with disabilities should only be educated in special schools (Bollier et al. 2021). Young people with disability are less likely to receive appropriate encouragement and support to stay connected to and/or fully benefit from education and school-based work experience programmes (Xu & Stancliffe 2019). This is compounded by limited access to effective school to post-school skills and employment supports, making it even more difficult for people with disability to find work and reducing their presence and visibility in the workplace (Xu & Stancliffe 2019; Buchanan et al. 2020). Australia’s Disability Discrimination Act introduced in 1992, and the Fair Work Act legislated in 2009, should protect workers from disability-related discrimination, but discrim-

The right to work “on an equal basis with others”  731 ination within the labour market is still widespread. The 2018 SDAC reported approximately 45 per cent of employed people with disability reported unfair treatment or disability-related discrimination from their employer, and 42 per cent from their work colleagues, in the previous year (ABS 2020). Similarly, the Australian Human Rights Commission 2016 report into disability-related discrimination found that while 41 per cent of disability-related discrimination complaints related to the area of employment, there is likely to be an underreporting of discrimination with many people experiencing financial difficulties in accessing legal support to pursue complaints (AHRC 2016). Results from the IDES survey help to further unpack experiences of discrimination within the labour market. Nearly one-third (30%) of respondents reported experiencing discrimination when applying for a job, 25 per cent in relation to workplace supports, and 27 per cent in relation to workplace inclusion (Dimov et al. 2019). More broadly, it should be noted that people with different types of disability experience discrimination and its impact in different ways (ABS 2020). For example, the 2018 SDAC reported that 67 per cent of people with psychosocial disability avoided situations because of their disability, compared with only 25.5 per cent of people with sensory impairments. Whilst it may not be directly related to discrimination, around a quarter of people with disability reported avoiding work because of their disability (ABS 2020). Reduced visibility in the workplace also reduces the opportunities for employers to build their understanding and confidence to employ and support people with disability (CRE-DH 2020). Indeed 20 per cent of respondents to the community attitudes survey agreed that employers should be allowed to refuse to hire people with disability (Bollier et al. 2021). Without prior experience of hiring people with disability, employers are less likely to consider hiring them, especially if they believe they do not have adequate knowledge or support to do so. Continuing efforts to provide employers with resources, financial incentives and examples of success have not improved employment outcomes for people with disability at scale to date, although recent initiatives targeting employers are determined to make inroads (IncludeAbility 2021; Australian Network on Disability 2021). This cycle is difficult to break. Evidence suggests that financial incentives such as wage subsidies, on which governments often rely to boost employment of people with disability, are ineffective when employer understanding of disability is low (Buchanan et al. 2020). Australia’s Disability Employment Strategy may ultimately mitigate many of these issues, but it falls short of outlining strategies that address the full range of barriers to work people with disability face in the current and emerging labour market (Department of Social Services 2021b). To contain long-term social and economic costs, governments should ensure that people with disability are factored into plans for economic recovery and draw on current knowledge and evidence to ensure that jobseekers with disability are not left behind (Devine et al. 2021; Olney, Deane & Bonyhady 2021).

OPPORTUNITIES TO IMPROVE EMPLOYMENT OUTCOMES AT SCALE Redressing labour market disadvantage for people with disability in the wake of COVID-19 calls for new strategies and levers beyond established practice, on both the supply side and the demand side of the labour market. On the supply side of the labour market, it entails ensuring people with disability are equipped, motivated and ready to work in a range of occupations.

732  Research handbook on disability policy This pool of workers may include highly skilled health and care workers who survive the virus with lasting debilitating effects. On the demand side – arguably the bigger barrier to employment for people with disability – it calls for evidence-informed policy and practice to address systemic barriers, conscious and unconscious biases, built environment disablers and competition for work affecting employment outcomes and conditions for people with disability. These aims are enshrined in policy, but struggle to gain traction in practice. Despite significant investment in employment interventions in Australia, it is increasingly evident that not enough is known about what employment interventions work and for whom and under what circumstances. It is also unclear how the plethora of policies and programmes across federal, state and territory jurisdictions interact with each other to either facilitate or undermine career development and pathways to employment for people with disability. The Australian Government therefore needs to better understand what actually helps people with disability find work when making future investment decisions. One thing that is known is that individualized career development from an early age and support to navigate complex education and employment systems is critical, yet many policies and programmes do not enable individualized support. Indeed, reforms to programmes such as DES have actually made it harder for providers to provide individualized support. There may be opportunities emerging through NDIS for younger participants to access employment supports, but it excludes the many people with disability that are not eligible for the NDIS. The priorities set out in the NDIS Participant Employment Strategy (NDIS 2019), the mid-term review of the DES Programme (Boston Consulting Group 2020), and the Disability Employment Strategy (Department of Social Services 2021b) are all important steps to shift the dial on disability employment, but they are not ground-breaking. They are also light on details of how they can be implemented in the current and emerging labour market. For example, there are lingering questions about how the NDIS and DES can work together to help participants prepare for, find, and keep a job (Olney, Devine, Karanikolas et al. 2021). Issues already identified in that interface include inconsistent definitions of disability; inconsistent eligibility criteria; inconsistent approaches to collecting and reporting data; inconsistent performance measures; limited knowledge among frontline workers in each service of the respective roles, responsibilities and available resources of each programme to support participants in seeking and maintaining work; and limited understanding of the roles and responsibilities of the NDIS and DES in relation to the growing number of government and non-government initiatives aimed at improving employment outcomes for people with disability and other groups of marginalized jobseekers across government, industry and the community sector (Olney, Devine, Karanikolas et al. 2021). These types of issues – jurisdictional ambiguities, information asymmetry, resource asymmetry, problem framing, competing priorities and cost shifting – are common in services working across philosophical and administrative boundaries (Olney & Dickinson 2019; Carey et al. 2018). Above all, there is a need to address the compounding disadvantage of jobseekers with disability in the current health and economic climate. This entails acknowledging the competing priorities of strategies to address unemployment for people with disability and other groups of disadvantaged jobseekers in the wake of the pandemic, which will leave them jostling with each other, and with newly unemployed people, for employers’ attention. Research suggests there is no ‘one size fits all’ approach to increasing the labour force participation rate of people with disability. While most jobseekers with disability have faced discrimination entering and navigating the job market to varying degrees – which can and

The right to work “on an equal basis with others”  733 should be universally addressed – they have other diverse motivations and barriers to work that call for nuanced responses. Some barriers may be directly related to their disability, such as the social and built environment in which they live and work, their access to tools and resources to get to and from work and perform work-related tasks, their access to and experiences of education in the past, the extent and duration of their disability, their capacity to work at particular times, modes of communication, or chronic or episodic health issues. Some barriers they share with other groups of jobseekers struggling to compete in the mainstream labour market, linked to the supply and demand for labour, their socio-economic circumstances, geographic location, and the nature and conditions of work available (ABS 2018; NDIS 2019). While COVID-19 presents significant challenges for governments in boosting the workforce participation of people with disability, it also presents opportunities. The pandemic has disrupted traditional organizational behaviour and customer bases. Developments in technology and remote work have the potential to level the playing field for people with disability in employment and to draw them into a global labour market. The dynamic environment has highlighted the value to government and business of embracing different perspectives in framing problems and solutions in a crisis. It offers an opening to reset how jobs are created, how work is organized, how productivity is measured, and business hiring and management practices to realize the full potential of Australia’s human capital. This calls for new approaches to policy design and implementation that reflect and balance the needs and circumstances of marginalized jobseekers and employers in the context of the current and future labour market, to expand opportunities for work in private and public employment, social and disability enterprises, the green economy, the gig economy, micro-enterprises, and self-employment. Disability-focused employment targets in the public sector and inclusive procurement and supply chain policies remain crucial in the short term to both boost employment and model desired behaviour, and the NDIS itself is leading by example as an employer. More broadly, debate continues around the idea of a Jobs Guarantee as an employment policy option, but the debate is hindered by a dearth of research exploring the inclusion of people with disabilities in such a scheme, and what the intended and unintended consequences may be (CRE-DH 2020). Reduced opportunities for people with disability to participate in early career-development activities and in the labour market more generally also reduces the opportunities for employers to build their understanding and confidence to employ people with disability (CRE-DH 2020). This makes it difficult to ‘break the cycle’ of hesitancy in recruitment: employers are less likely to consider employing a person with disability if they do not have previous experience of working with someone with disability. This is compounded when employers do not know how to access information and support to improve their capacity to include people with disability in the workplace. In turn, limited employer confidence, along with insufficient on-the-job support for employers and employees with disability, undermines the effectiveness of other ‘demand-side levers’, such as wage subsidies (CRE-DH 2020). There are positive examples of organizations and stakeholders working to address ‘demand-side’ structural barriers such as employer discrimination and thereby contribute to job creation for people with disability. For example, the Australian Federation of Disability Organisations (AFDO) – a cross-disability umbrella group representing Disabled People’s Organisations and disability representative organizations – in collaboration with researchers and local governments are scaling up their research-informed engagement with small and medium-sized businesses to promote their disability confidence and help them develop strategies to address barriers to employing and retaining people with disability in their work-

734  Research handbook on disability policy force (AFDO 2021). The Australian Network on Disability – a national, membership-based, for-purpose organization – works to directly connect individuals with disability to training and employment opportunities with their network of more than 300 organizations across the private, public and for-purpose sector (Australian Network on Disability 2021). The Australian Human Rights Commission has recently launched their IncludeAbility initiative which aims to increase meaningful opportunities for people with disability, including through co-designing pilot programmes to support inclusion across the employment cycle (IncludeAbility 2021). The Australian Government has also launched its Disability Gateway to improve access to information and available services including in relation to employment (Australian Government 2021c). Government has an opportunity to learn how these strategies can be further scaled-up across the private, public and for-purpose sectors. It can explore how to recognize and shore up connections between policies and processes to build employers’ confidence to employ people with disability, to provide reasonable on-the-job supports, to offer incentives to employers that generate private value and public value, and to discourage employment services providers from funnelling jobseekers with disability into short-term and insecure work. Widespread remote working during the COVID-19 pandemic has boosted employers’ confidence and capacity to make adjustments to traditional working arrangements. To capitalize on this, governments can help employers understand the value of a diverse labour force, how inclusion and diversity can build creative, resilient and competitive businesses, and build their confidence to tap into more diverse talent pools through consultative, coordinated and data-driven effort on a national scale. This will be critical to ensure marginalized jobseekers, including people with disability, are not sidelined in the workforce of the future.

CONCLUSIONS Widespread marginalization of Australians with disability in the labour market generates complex policy problems and costs on multiple fronts. The private benefits of employment for people with disability, and its public benefits in terms of reducing pressure on the welfare, health, disability, housing and justice systems, are lost. A key challenge for those designing and delivering disability employment policy in this environment is ensuring that people with disability can access the services and support they need for full inclusion and participation in the community, including employment. Federal, state and territory governments must work together to address this issue and determine how integrated services and supports that concurrently address vocational and non-vocational barriers to work can be appropriately resourced and implemented across jurisdictions. Governments frame policy problems and solutions, and choose and apply policy instruments, for particular purposes. Within different parts of the public sector, in line with the directions and priorities of relevant Ministers, decisions are made about how public services should be delivered and by whom, and how service delivery should be monitored, with no responsibility for flow-on effects (Olney 2021). Australia’s complex approaches to helping people with disability prepare for and enter the labour force are both ineffective and inefficient, and are not mutually reinforcing (Olney, Devine, Karanikolas et al. 2021; Dimov et al. 2019). Together, the health and economic risks posed by the COVID-19 pandemic, lessons learnt about flexible and remote work during the pandemic, and a push for concerted policy effort over the next

The right to work “on an equal basis with others”  735 decade through Australia’s Disability Strategy and Disability Employment Strategy, may be the impetus needed to turn the tide on employment for Australians with disability.

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736  Research handbook on disability policy CRE-DH (2020) Submission to the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability, Employment Issues Paper. Centre of Research Excellence in Disability and Health, Melbourne. Deloitte Access Economics (2011) The Economic Benefits of Increasing Employment for People with Disability. Commissioned by the Australian Network on Disability, Melbourne. Department of the Prime Minister and Cabinet (2020) COAG becomes National Cabinet. https://www ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ .pmc.gov.au/news-centre/government/coag-becomes-national-cabinet Department of Social Services (2018) Disability Employment Services Grant Agreement, Effective July 1, 2018. Australian Government, Canberra. Department of Social Services (2019) Supported Employment under the NDIS: Industry Information and Consultation Paper, November. Australian Government, Canberra. Department of Social Services (2021a) Developing the New National Disability Strategy. Australian Government, Canberra. Department of Social Services (2021b) Employ My Ability: Disability Employment Strategy. Australian Government, Canberra. Department of Social Services (2022) Information Linkages and Capacity Building (ILC) Programme. Australian Government, Canberra. Devine, A., Dickinson, H., Brophy, L., Kavanagh, A. & Vaughan, C. (2019) ‘I don’t think they trust the choices I will make’: Narrative analysis of choice and control for people with psychosocial disability within reform of the Australian Disability Employment Services programme. Public Management Review, 23 (1), 10–30. Devine A., Fortune N., Smith-Merry J., Llewellyn G., Aitken Z., Stancliffe R., et al. (2021) Centre of Research Excellence in Disability and Health (CRE-DH): Submission to the Department of Social Services on the National Disability Employment Strategy Consultation Paper. The University of Melbourne. doi.org/10.26188/14603091 ​ ​ ​ ​ Dimov, S., Milner, A., Byars, S., Devine, A. & Kavanagh, A. (2019) Improving Disability Employment Study (IDES): Wave 1 Report. University of Melbourne, Melbourne. DRC (2020) Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Issues Paper: Employment. https://disability.royalcommission.gov.au/publications/employment ​ ​ ​ ​ ​ ​ Drew, N., Funk, M., Tang, S., Lamichhane, J., Chávez, E., Katontoka, S., … Saraceno, B. (2011) Human rights violations of people with mental and psychosocial disabilities: An unresolved global crisis. The Lancet, 378 (9803), 1664–1675. Fortune, N., Llewellyn, G., Stancliffe, R., Badland, H. & Emerson, E. (2021) Disadvantage Facing Young people with Disability in Australia. University of Melbourne, Melbourne. doi.org/10.26188/ 14531763 Friel, S. & Demaio, S. (2020) COVID-19: Can we stop it being this generation’s great depression? Insight +, Medical Journal of Australia. https://insightplus.mja.com.au/2020/14/covid-19-can-we ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -stop-it-being-this-generations-great-depression/ ​ ​ ​ ​ ​ ​ Hatzenbuehler, M. L., Phelan, J. C. & Link, B. G. (2013) Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103 (5), 813–821. ILO (2015) Decent Work and the 2030 Agenda for Sustainable Development. International Labour Organization, Geneva. https://www.ilo.org/wcmsp5/groups/public/---europe/---ro-geneva/---ilo ​ ​ ​ ​ ​ ​ ​​​ ​​​ ​ ​​​ ​ -lisbon/documents/event/wcms_667247.pdf ​ ​ ​ ​ ​ ILO (2020) COVID-19 and the World of Work: Ensuring the Inclusion of Persons with Disabilities at All Stages of the Response. Policy Brief, June. https://www.ilo.org/wcmsp5/groups/public/---ed_emp/-​ ​ ​ ​ ​ ​ ​​​ ​ ​​​ -ifp_skills/documents/publication/wcms_746909.pdf ​ ​ ​ ​ ​ ​ ILO & OECD (2018) Labour Market Inclusion of People with Disabilities. Paper presented at the 1st Meeting of the G20 Employment Working Group, 20–22 February, Buenos Aires, Argentina. International Labour Organization (ILO) and Organisation for Economic Co-operation and Development (OECD). IncludeAbility (2021) https://includeability.gov.au/ ​ ​ ​ Jobs Victoria (2020) Our Programmes. Department of Jobs, Precincts and Regions, State Government. Jones, M. (2021) Disability and Labor Market Outcomes. IZA World of Labor 2021: 253 IZA Institute of Labor Economics. doi:10.15185/izawol.253.v2. https://wol.iza.org/uploads/articles/566/pdfs/ ​ ​ ​ ​ ​ ​ ​ ​ disability-and-labor-market-outcomes.pdf?v=1 ​ ​ ​ ​ ​ ​ ​ ​

The right to work “on an equal basis with others”  737 Milner, A., LaMontagne, A. D., Aitken, Z., Bentley, R. & Kavanagh, A. M. (2014) Employment status and mental health among persons with and without a disability: Evidence from an Australian cohort study. Journal of Epidemiological Community Health, 68 (11), 1064–1071. http://jech.bmj.com/ ​ ​ ​ ​ content/68/11/1064 ​ ​ ​ Mitra, S., Palmer, M., Kim, H., Mont, D. & Groce, N. (2017) Extra costs of living with a disability: A review and agenda for research. Disability and Health Journal, 10 (4), 475–484. National People with Disabilities and Carers Council & Department of Families, Housing, Community Services and Indigenous Affairs (2009) Shut Out: The Experience of People with Disabilities and their Families in Australia: National Disability Strategy Consultation Report. Australian Government, Canberra. NDIS (2018) Employment Outcomes 30 June 2018: NDIS Participants, their Families and Carers. National Disability Insurance Agency. NDIS (2019) NDIS Participant Employment Strategy 2019–2022. https://www.ndis.gov.au/about-us/ ​ ​ ​ ​ ​ ​ ​ strategies/participant-employment-strategy ​ ​ ​ NDIS (2020) Supports in Employment. https://www.ndis.gov.au/understanding/supports-funded-ndis/ ​ ​ ​ ​ ​ ​ ​ ​ ​ supports-employment ​ NDIS (2021) Quarterly Report: 2020–21 Q3. https://www.ndis.gov.au/about-us/publications/quarterly ​ ​ ​ ​ ​ ​ ​ ​ ​ -reports OECD (2010) Sickness, Disability and Work: Breaking the Barriers: A Synthesis of Findings across OECD Countries. Organisation for Economic Co-operation and Development, Paris. OECD (2020) OECD Employment Outlook 2020: Worker Security and the COVID-19 Crisis. Organisation for Economic Co-operation and Development, Paris. http://www.oecd.org/employment-outlook/ ​ ​ ​ ​ ​ Olney, S. (2016) False Economy: New Public Management and the Welfare-to-Work Market in Australia. University of Melbourne, Melbourne. Olney, S. (2021) Not my problem: The impact of siloed performance management on policy design and implementation. In D. Blackman (ed.) Handbook on Performance Management in the Public Sector (pp. 28–41). Cheltenham, UK and Northampton, MA, USA: Edward Elgar Publishing. Olney, S. & Dickinson, H. (2019) Australia’s new National Disability Insurance Scheme: Implications for policy and practice. Policy Design and Practice, 2 (3), 275–290. doi:10.1080/25741292.2019.15 86083 Olney, S., Deane, K. & Bonyhady, B. (2021) Melbourne Disability Institute Response to the National Disability Employment Strategy Consultation Paper, April. Melbourne Disability Institute, University of Melbourne. Olney, S., Devine, A., Karanikolas, P., Dimov, S., Malbon, J. & Katsikis, G. (2021) Disability and work in a health and economic crisis: Mitigating the risk of long-term labour market exclusion for Australians with disability through policy coordination. Australian Journal of Public Administration, 81 (1), 163–180. doi:10.1111/1467-8500.12500 O’Sullivan, D., Rahamathulla, M. & Pawar, M. (2020) The impact and implications of COVID-19: An Australian perspective. The International Journal of Community and Social Development, 2 (2), 134–151. Parliament of Australia (2011) Report on the Senate Inquiry into the Administration and Purchasing of Disability Employment Services in Australia. Commonwealth of Australia, Canberra. Parliament of Australia (2019) Jobactive: Failing those it is Intended to Serve: Report on the Senate Inquiry into the Appropriateness and Effectiveness of the Objectives, Design, Implementation and Evaluation of jobactive in Australia. Commonwealth of Australia, Canberra. PHOSP-COVID Collaborative Group (2022) Clinical characteristics with inflammation profiling of long COVID and association with 1-year recovery following hospitalisation in the UK: A prospective observational study. The Lancet Respiratory Medicine. https://doi.org/10.1016/S2213 ​ ​ ​ ​ ​ ​ -2600(22)00127-8 ​ Productivity Commission (2011) Disability Care and Support Inquiry, Report no. 54. Australian Government, Canberra. Productivity Commission (2017) National Disability Insurance Scheme (NDIS) Costs Study Report. Australian Government, Canberra.

738  Research handbook on disability policy UN (2006) Convention on the Rights of Persons with Disabilities: Article 27: Work and Employment. United Nations, Geneva. https://www.un.org/development/desa/disabilities/convention-on-the-rights ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -of-persons-with-disabilities/article-27-work-and-employment.html ​ ​ ​ ​ ​ ​ ​ ​ ​ UN (2021) Sustainable Development Goal 8, Target 8.5. United Nations. https://sdgs.un.org/goals/goal8 ​ ​ ​ ​ ​ Vu, B., Khanam, R., Rahman, M. & Nghiem, S. (2020) The costs of disability in Australia: A hybrid panel-data examination. Health Economics Review, 10 (1), art. 6. https://doi.org/10.1186/s13561-020 ​ ​ ​ ​ ​ ​ ​ -00264-1 ​ WHO & The World Bank (2011) World Report on Disability. World Health Organization. Wilkinson, R. & Pickett, K. (2009) The Spirit Level: Why Equal Societies Almost Always Do Better. London: Penguin Group. Xu, T. & Stancliffe, R. J. (2019) An evaluation of employment outcomes achieved by transition to work service providers in Sydney, Australia. Journal of Intellectual & Developmental Disability, 44 (1), 51–63. https://doi.org/10.3109/13668250.2017.1310809 ​ ​ ​ ​ ​ ​ ​

62. Narrative 18: Sanist wonderland Damian Mellifont

To disclose neurodivergence or not to disclose, Reasons which support and those that oppose. Deliberation, procrastination to a point I can’t stand, When public service policy says all will be grand. After much lost sleep, my decision is made, Disclose I must, do not try to dissuade. Just how to do it, just how do I tell? Approaching my boss, feels like approaching hell. Hands all sweaty, and throat so dry, This is my moment, no time to be shy. What’s up? Asked my boss with a look of concern, Let’s get a coffee and soon you will learn. Away from office sanists, who so love to pry, I said I can’t do presentations, and here is why. Now’s the time to disclose, no more deferment, Out came the words, I am neurodivergent. Awaiting a reply, and starting to perspire, I heard...you’re honest and that’s something to admire. I could have lied or made some excuse, So pleased that I decided to share my truth. Disclosure triumphs with open minds, Take note, dear reader, not all are so kind. Some will not follow this enlightened path, After disclosing to others, I’ve soon faced their wrath. The public servant sanist, so cold and so heartless, Thriving in silence, under a cloak of darkness. Bigoted minds, demanding all be ‘normal’ and bland, Ignorance reigns in a sanist wonderland. In the blink of an eye, micro-aggressions commence, Doubting, fearing, undermining of competence. Anti-discrimination law, sanists openly defy, Approved accommodations, they love to deny.

739

740  Research handbook on disability policy After disclosing, upon you they trod, Gossiping, gas lighting, calling you odd! Prepare for these and other forms of hostility, The sanist, so scared of diverse forms of ability. No intent to raise fear, nor to cause alarm, But an unrestrained sanist can do real harm. So much pain, more than one can stand, Just how to survive a sanist wonderland? The sanist, always deceptive and cruel, But there exists no bigot, who is above the rules. Diversity and inclusion policy is on your side, Such government policy, sanists ‘should’ always abide. On this matter, let there be no confusion, Allow no sanist to push you into seclusion! Be loud, be strong, openly challenge their deceit, The cowardly sanist, they soon will retreat. Call out their shit, your abilities will not be denied, Stand tall, stand proud, embrace neurodivergent pride! Encourage the sanist to learn and to grow, But if they refuse, it is THEY who should GO!! A question to public service managers is one they should heed, How many disclose neurodivergence in the departments that you lead? If the numbers are few, as I suspect many will land, Are you nothing but a leader of a sanist wonderland?

63. Does the CRPD matter? A comparison of sheltered workshop policies in Japan, Taiwan, and South Korea Yi-Chun Chou, Jun Nakagawa and Eun-Ju Yoo

1. INTRODUCTION The first sheltered workshop for people with disabilities was founded by a French Catholic church, St. Vincent de Paul, in the 17th century. Sheltered workshops, or segregated employment, later expanded to other countries, including Japan, Taiwan, and South Korea in East Asia. In general, policies on sheltered workshops for people with disabilities in most Western countries have similar characteristics. For example, they provide long-term support to people with disabilities, offer lower wages relative to the market rate, are situated in remote locations (far away from other communities), and implement a facilities-based daily living model. Most of these characteristics violate the employment rights of people with disabilities outlined in the Convention on the Rights of Persons with Disabilities (CRPD) 2006. Sheltered workshop policies differ by region and country, and these differences are highly related to the policy models and structures of each country and region. Whether and when the work rights stipulated by the CRPD can be realized in all countries merits investigation. English-language literature on policies concerning sheltered workshops for people with disabilities in East Asia is relatively scarce, as are publications on the implementation of the CRPD in these countries. Most related articles have concentrated on a single East Asian country. Therefore, whether policies concerning sheltered workshops for people with disabilities across jurisdictions in East Asia have similar characteristics is worth investigating. Moreover, the policy changes made to comply with the CRPD should be examined. Document analysis and comparative research methods were employed to explore commonalities with respect to social security and social integration in policies concerning sheltered workshops for people with disabilities in Japan, Taiwan, and South Korea. The findings are expected to facilitate a discussion on the impacts of the CRPD on sheltered workshop policies in these locations.

2.

CRPD AND SHELTERED WORKSHOPS FOR PEOPLE WITH DISABILITIES

2.1

Sheltered Workshops History and Features

Sheltered workshops for people with disabilities can be traced back to the 1600s. Their origin and historical development are linked to churches, hospitals, workhouses, and special education schools (Weiss, 2014), which are institutions that have established sheltered workshops for various reasons. Regardless of the purpose of the institution (medical treatment, rehabil741

742  Research handbook on disability policy itation, or employment), people with disabilities also worked in sheltered workshops. Such initiatives are now considered negatively because of how they discriminate against people with disabilities, as evident in low wages, segregation, and similar practices. The practices of sheltered workshops differ substantially by country and region. In general, sheltered workshops frequently serve as alternative workplaces for people with physical, intellectual, and mental disabilities that make it difficult for them to find work in competitive and less inclusive conditions of the open labor market. Sheltered workshops can provide people with disabilities with a protective environment wherein they can participate in production activities. Furthermore, sheltered workshops can provide rehabilitation activities aimed at improving personal and social skills. In most countries, sheltered workshops are not obligated to comply with the rules of the open labor market—for example, they need not pay the minimum wage (Gill, 2005). People in the workshops typically have difficulty obtaining a sufficient income. Often people with disabilities are granted extended social benefits or allowances instead of monetary payment as compensation for the work they perform. Although the protective environment of sheltered workshops can have benefits, employment in such workshops may limit other opportunities of people with disabilities. Sheltered workshops are often located in remote areas, far away from larger communities. The isolation and the implementation of a facility-based daily plan can promote institutionalization (Chou, 2018). The role of sheltered workshops is a mixture of rehabilitation, therapy, training, and employment. People often question the social functions and conditions of sheltered workshops, especially with regard to whether they should be used as transitional training venues or as regular workplaces. The goal of transitional training venues is often incompatible with practice. In many workshops, most people with disabilities stay there for many years and have no other work opportunities. Were sheltered workshops to constitute regular workplaces, the wages and working conditions for employees would need to be improved in the interest of human rights and according to the regulations of the open labor market. 2.2

Sheltered Workshops from the CRPD Perspective

Sheltered workshops could be understood as demonstrating that people with disabilities can also participate in work, with some parents of people with disabilities supportive of this notion. However, the impact has been evaluated differently since the late 20th century. The Americans with Disabilities Act, which was ratified in the United States in 1990, and the CRPD, which was adopted in 2006, have had varying impacts on policies concerning sheltered workshops. In particular, by requiring the submission of state reports by governments and regular reviews by the United Nations (UN), the CRPD seeks to ensure the rights of people with disabilities are being respected. The traditional medical model of disability asserts that people with disabilities only require protection and subsistence welfare. Relevant social arrangements to fulfill these needs include special education schools, living institutions, and sheltered workshops. By contrast, the human rights model of disability seeks to address the social barriers rather than the person’s differences or impairments. Moreover, this model argues that the protective and isolated social system is antiquated and should be discarded to enable people with disabilities to participate in all aspects of life (Quinn & Degener, 2002). The human rights model promotes the rights of people with disabilities to employment options that are equal to others. The human rights model seeks to protect the legal capacity of people with disabilities, promotes a comprehensive policy that goes beyond antidiscrimination law, considers the impact

Does the CRPD matter?  743 people with disabilities’ impairment has on their lives, recognizes that barriers to full social participation consist of distinct layers, and features strategies for the inclusion of people with disabilities (Degener, 2017). As indicated in Article 27 of the CRPD (Work and employment), the right to work is a crucial concern and closely related to other provisions of the CRPD, especially equality and nondiscrimination (Article 5), barrier-free workplaces (within Article 9—Accessibility), and reasonable accommodation (Article 2). Article 27 mentions the following key points concerning work. The government should ensure that people with disabilities can select a job and, as employees, receive the same treatment as persons without disabilities. This includes equal opportunities, equal pay for work of equal value, access to vocational training and occupational rehabilitation opportunities, access to employment opportunities in both the public and private sectors, access to a barrier-free working environment with reasonable accommodations provided, and safe and healthy work conditions (Ferraina, 2012). Applying these standards to examine the characteristics of policies concerning sheltered workshops, especially those with salaries lower than the minimum wage and in isolated workplaces, reveals that sheltered workshops do not comply with the CRPD (Chou, 2018, 2021). The CRPD not only states that a work policy for people with disabilities should be in line with human rights but also defines discrimination in the workplace. The continued operation of sheltered workshops in many countries that have signed the CRPD demonstrates that the isolation and discrimination problems that surround them are persistent challenges to CRPD implementation (May-Simera, 2018). Article 27 does not provide detailed regulations on the organization of sheltered workshops or prohibitions against certain practices. Article 26 concerns making adjustments to the habilitation and rehabilitation. Sheltered workshops have various functions, including treatment, training, rehabilitation, and employment, which are quite similar to the rehabilitation activities to which Article 26 refers. In many countries, even if antidiscrimination law is in place, persistent barriers, such as insufficient support for and acceptance of employees with disabilities in the open labor market, remain.

3.

PRE- AND POST-CRPD SHELTERED WORKSHOP POLICIES IN JAPAN, SOUTH KOREA, AND TAIWAN

3.1

Japan: Characteristics and Practices of Sheltered Workshops in Disability Employment Policy

Historical development of disability policy in Japan Regarding disability work and employment, the government of Japan employed a two-pronged policy approach. The government encouraged employers to hire qualified people with physical disabilities on the open labor market by establishing disability quotas under the Act on Employment Promotion of Persons with Disabilities of 1960 (AEPPWD). Moreover, the government gave less qualified people with disabilities opportunities to undergo vocational training and become quasi-employed at sheltered workshops under the provisions of the Public Assistance Law of 1950 and a series of other welfare laws. A circular notice issued in 1951 by the Director of the Labor Standard Bureau of the Ministry of Health, Labor and Welfare stated that people working in sheltered workshops were not subject to the Labor Standards Act of

744  Research handbook on disability policy 1947 (hereafter LSA). This exemption was later extended to the Minimum Wage Act of 1959 (hereafter MWA). Characteristics of sheltered workshops in Japanese disability employment policy The present policy for disability work and employment follows the two-pronged policy above. Transition Programs aimed at facilitating a smooth transition to competitive employment have been provided in AEPPWD, and a collection of Welfare Services Programs (WSPs) for working and vocational training have been provided in the Act on the Comprehensive Support for the Daily and Social Life of Persons with Disabilities of 2012 (ACSPWD) (Nakagawa, 2018). The disability quota system, which mandates that employers hire a certain percentage of employees with certified physical, mental, intellectual, and developmental disabilities, plays an essential role in the shift to competitive employment for people with disabilities. The mandatory employment rates have been increased once every few years. For the private sector, the 2021 rate is 2.3%. Other programs to transition people with disabilities to competitive employment focus on antidiscrimination regulations (Hasegawa et al., 2021). The Act on the Elimination of Discrimination Against Persons with Disabilities of 2013 and the 2013 amended AEPPWD prohibit employers from discriminating against employees and job applicants on the basis of disabilities and impose the duty to reasonably accommodate for people with disabilities in the workplace. These laws were enacted to prepare to ratify the CRPD. Vocational rehabilitation is provided at various dedicated centers, including Local Vocational Centers for Persons with Disabilities (47 with five branches as of 2020) and Employment and Life Support Centers for Persons with Disabilities (335 as of 2020) (MHEW, 2020). WSPs target less qualified people with disabilities. The Act on Independent Living for People with Disabilities of 2005 (AILPWD) and the 2012 ACSPWD substantially changed relevant policy and divided sheltered workshops, which used to have a single legal definition, into three programs: Sheltered Workshop Type A, Sheltered Workshop Type B, and Community Activity Support Program (CASP) Type III. Type B sheltered workshops may be regarded as regular sheltered workshops, which provide vocational training and offer light-duty jobs to less qualified people with disabilities. Type A sheltered workshops provide opportunities for supervised employment to people with disabilities who are sufficiently qualified to hold a job but cannot obtain opportunities in the open labor market. CASP Type III provides vocational training and offers light-duty work for the least qualified people with disabilities (Konishi & Nakagawa, 2022). The AILPWD facilitated the transition from WSPs to open labor market participation and retention in employment settings over the medium-to-long term. From the AILPWD stemmed the Transition Program to Competitive Employment (TPCE), which encourages people to shift from sheltered workshops (Types A and B) and CASP Type III to general labor market employment. Similar to disability employment providers, the TPCE offers people vocational training at an agency and internship opportunities at real job sites as well as career counseling, job analysis, job development, and job placement services. In 2017, under the ACSPWD, the Retention Program was established. This program provides certain services to people with disabilities who work for an open labor market employer to help them keep their job for more than six months. Retention Program agencies receive regulation-specified amounts of remuneration according to the retention rate they attain (Konishi & Nakagawa, 2022).

Does the CRPD matter?  745 Japan’s Ministry of Health, Labor and Welfare reported that the total number of people with disabilities working in the general labor pool in 2020 was 479,989. Of these, 263,033, 123,038, and 93,916 employees had physical, intellectual, and mental disabilities, respectively (these figures include double- and half-counted numbers under disability quotas). Regarding WSP clients, 73,180, 267,475, 34,258, and 11,775 correspond to Sheltered Workshops Type A and Type B, the TPCE, and Retention Programs, respectively (Konishi & Nakagawa, 2022). Transition from sheltered workshop programs to integrated and general labor market employment in Japan The numbers and rates of employees with disabilities hired by open labor market employers have rapidly and steadily increased for almost two decades. First, the number of employees with disabilities has increased substantially since 2003. Specifically, more than 10,000 employees with disabilities have been employed every year since 2003 except during the global financial crisis in 2008 and 2009. Notably, each year since 2011, more than 20,000 employees with disabilities have been hired. Second, the numbers and rates of employees with disabilities who successfully transition from WSPs to competitive employment are on the rise. In 2018, this number was 19,963 employees—15.5 times that in 2003. The transition rates have grown from 1.3% in 2003 to 4.3% in 2016. The rates corresponding to the TPCE, Sheltered Workshop Type A, and Type B were 26.4%, 4.7%, and 1.1%, respectively in 2016. Third, the number of those availing themselves of the services of employment centers has risen. Furthermore, the number of individuals who have obtained employment opportunities through such centers increased from 38,882 in 2015 to 90,191 in 2019. Wages, stipends, and income guarantees for people with disabilities in Japan People with disabilities in Japan can receive two types of remuneration for their work. One is wages for those in competitive employment; the other is stipends for clients who work in WSPs, except for Sheltered Workshop Type A. The MWA mandates that employers pay employees in competitive employment and Type A sheltered workshops more than the minimum wage regardless of whether they have a disability. However, the MWA also provides that a subminimum wage can be paid to less qualified employees, including people with disabilities. The exact amount of the subminimum wage is determined on the basis of relative productivity, which is determined by examining the productivity of an employee with disabilities compared with that of an employee without disabilities. Notably, a 2005 circular notice exempts clients of WSPs, except those working in Type A sheltered workshops, from the stipulations of the LSA and MWA. In 2018, the average monthly salary of employees with physical, intellectual, mental, and developmental disabilities was approximately US$2,070, US$1,110, US$1,190, and US$1,200, respectively. For reference, the minimum wage in the Tokyo area is approximately US$9.50 per hour. In 2019, the average monthly salary of clients at Type A sheltered workshops was US$750. For the same year, the average monthly stipend for clients of Type B sheltered workshops and CASP was US$115. The Japanese government provides two income security programs for people with disabilities. One is a public disability pension plan, and the other is a social assistance plan. Japan’s public pension scheme consists of a contributory social insurance system featuring two tiers: Basic Benefits (BB) for the self-employed, farmers, full-time homemakers, and employees and Earnings-Related Benefits for employees. Basic and earnings-related benefits for people

746  Research handbook on disability policy with disabilities are granted only to persons with profound disabilities. The monthly amounts of BB for people with disabilities on the Grade 2 and Grade 1 Disability Basic Benefit are equivalent to US$620 and US$775, respectively. Many clients working in Type B sheltered workshops receive the full monthly amount of basic benefits along with a stipend from their agent. Thus, an individual with a Grade 2 disability would have an average monthly income of US$735 (US$115 as stipends from Type B sheltered workshop plus $620 as BB). This amount does not allow them to live independently; they are economically dependent upon their family. People with disabilities may receive social assistance benefits from the municipal government. For a single person with disabilities who is living in a Tokyo suburb, does not have any income, and is very poor, they receive an estimated US$1,430 in social assistance benefits (US$750 for basic needs + US$510 as a shelter allowance + US$170 as a disability allowance corresponding to Grade 1 on the living place scale and the Grade 2 Disability Basic Benefit). However, only a small number of people with disabilities employed at Type B sheltered workshops would be eligible for social assistance benefits because of the extremely strict means test. Inferred impacts of the CRPD on sheltered workshop policy in Japan Neither the CRPD nor the Concluding Observations by the UN Committee on the Rights of Persons with Disabilities have influenced Japan’s disability employment programs, except with regard to policies on antidiscrimination and reasonable accommodation. In fact, most Transition Programs and WSPs have been in place since and even before 2005. Furthermore, as of September 2021, disability policies and programs have not yet been reviewed by the Committee. The Japanese government signed the CRPD in 2014, and the first report, which was submitted in 2016, is awaiting review. The recommendations the Committee will make in response to Japan’s initial report can be inferred by examining the Concluding Observations issued for the reports of other States Parties. First, the Japanese government may be advised to modify or abolish sheltered workshops on the basis of the experiences of States Parties such as Germany, Australia (Second and Third Concluding Observations), and South Korea. The Committee may require the government to make sweeping changes to the present multitiered structure and to reorganize Sheltered Workshop Type B and CASP Type III in particular into more employment-oriented programs. Second, the government may be instructed to modify the wage and stipend system for people with disabilities; this would be in keeping with Australia being advised to change its pro rata wage system for sheltered workshop employees, and with South Korea being urged to establish a wage supplement program. The Committee may also require that the government review the exemption of the payment of the minimum wage to people with disabilities employed by Type B sheltered workshops and CASP Type III as well as the subminimum wage system in general. Third, it might request the government to alter the disability pension, which would be similar to how it recommended that South Korea change the qualifying standards of its disability pension, which is available only to persons with profound disabilities. None of the inferred recommendations are compatible with the multitiered structure the Japanese government has long maintained. Therefore, future policies hinge on how the government responds to the Committee’s recommendations under the present policy framework.

Does the CRPD matter?  747 3.2

South Korea: Characteristics and Practices of Sheltered Workshops in Disability Employment Policy

Historical development of disability policy in South Korea Following the political and economic turmoil of the Korean War and other events, disability policy became the subject of social debate in South Korea. However, laws and policies for people with disabilities were only formulated after the 1980s because the domestic political situation was unstable through the 1970s. Representatively, the Welfare Act for the Mentally and Physically Disabled enacted in 1981 became an important starting point for the development of welfare policies for people with disabilities. Since mid-1980 in Korea, the policy has expanded beyond welfare to employment and education. The Act on the Employment Promotion and Vocational Rehabilitation of Persons with Disabilities is based on the quota–levy system and includes vocational rehabilitation services and employment services for people with disabilities and their employers. Notable laws enacted by South Korea’s Ministry of Health and Welfare include the Act on Welfare of Persons with Disabilities, the 2005 Disability Discrimination Act, the 2010 Convenience Promotion Act, the 1988 National Pension Act, and the 2012 Disabled Persons Fund Act. The Ministry of Employment and Labor, which promoted the Act on the Employment Promotion and Vocational Rehabilitation of Persons with Disabilities, and the Ministry of Education, which supported the Special Education Promotion Act, are the departments responsible for implementing policies for people with disabilities. Numerous other relevant departments jointly plan and implement the five-year Comprehensive Policy Plan for Persons with Disabilities. In 2020, people with disabilities accounted for approximately 5.1% of the total population of South Korea, or approximately 2.6 million people. In 2020, the labor participation rate, employment rate, and unemployment rate of people with disabilities aged 15 years and older in South Korea were 37.0%, 34.9%, and 5.9%; for the general population, these rates were 63.0%, 60.2%, and 4.5%, respectively. Characteristics of sheltered workshops under disability employment policy in South Korea In South Korea, sheltered workshops are mainly operated and supported by the Ministry of Health and Welfare and the Ministry of Employment and Labor according to their respective laws. The Ministry of Health and Welfare is primarily responsible for establishing, operating, and supporting sheltered workshops. In 2019, the country’s 683 sheltered workshops were classified into three types according to the work abilities of the people with disabilities employed there. First, 65 workplaces provide work opportunities, pay more than the minimum wage, and support people’s transition to general labor market employment. Second, 593 “protected workplaces” provide vocational rehabilitation programs, offer work opportunities under protective conditions, pay wages corresponding to the value of the work performed, and support transfer to workplaces or to the general labor market. Third, 25 vocational training facilities enable people to acquire basic work skills and support their transition to protected workplaces, workplaces, and the general labor markets. In 2019, approximately 19,000 people, accounting for approximately 0.7% of the total number of people with disabilities in South Korea, were employed in sheltered workshops. The Ministry of Employment and Labor provides various employment services based on the quota–levy system. In 2021, employers with 50 or more full-time employees in the public

748  Research handbook on disability policy and private sectors are legally obligated to have people with disabilities account for at least 3.4% and 3.1% of their total number of employees, respectively. At the end of 2020, the employment rate of companies obligated to hire people with disabilities was 2.92%. This rate is on the rise. In the public and private sectors, the employment rate for people with disabilities is 3.33% and 2.79%, respectively. A feature of the Act on the Employment Promotion and Vocational Rehabilitation of Persons with Disabilities is that only employers with 50 or more full-time employees are obligated to employ people with disabilities. However, for vocational rehabilitation services and employment services based on this act, employers with fewer than 50 full-time employees must also comply. Hence, people with disabilities, including those employed by sheltered workshops, are recognized as workers under the Labor Standards Act. Until 2019, when the transition support program was launched in accordance with CRPD recommendations, the main incentive for employing people with disabilities was for sheltered workshops hiring people in excess of the employment obligation. Transition from sheltered workshop programs to integrated and labor market employment in South Korea South Korea’s transition support program is implemented under the provisions of the Act on Welfare of Persons with Disabilities and the Act on the Employment Promotion and Vocational Rehabilitation of Persons with Disabilities. The numbers of people who use sheltered workshops and adaptation training facilities are 417 and 19,056 individuals, respectively. The number of people with disabilities employed in protective workplaces and working workplaces is 15,796 and 2,823, respectively. No official statistics on the transition rate are available, but a 2018 study reported that approximately 2.3% of people with disabilities in sheltered workshops transitioned to the general labor market that year. In 2020, 167 sheltered workshops and 1,175 people with disabilities participated in transition workshop programs, with 52 of these people with disabilities employed in the general labor market (Lee et al., 2020). The workshop program of the Ministry of Health and Welfare is aimed at improving work skills. General labor market employment is further promoted through the transition support program, which consists of a transition preparation stage, a transition support stage, and a job security stage. In the first stage, a program to improve job competency is implemented. Participants are given a monthly allowance of 300,000 KRW for up to two years. In the second stage, support employment services, internships, and customized training are offered. In the third stage, in the case where a participant obtains a job paying minimum wage or higher, they are paid a transfer allowance of 1 million KRW for up to three months. Furthermore, the employer is paid 800,000 KRW per month for up to three years (Yoo, 2018). Wages, stipends, and income guarantees for people with disabilities in South Korea The income of people with disabilities in South Korea can be divided into public transfer payments and wages. In public transfer payments, three types of income support benefits and additional financial support can be received. They depend on the conditions of receipt. The first is the disability pension included in the contribution-based national pension. The benefit varies according to the degree of disability. In 2019, the monthly average was approximately 370,000 KRW. The second is the disability pension, a non-contribution-based public assistance program that gives recipients a maximum of 300,000 KRW per month depending on the beneficiary’s condition. The third is the public assistance system, which provides financial

Does the CRPD matter?  749 assistance based on income regardless of disability. Households with a person with disabilities accounted for approximately 17% of all eligible households in 2019 (Ministry of Health and Welfare, 2019). Additional financial support can take the form of a disability allowance (40,000–200,000 KRW per month), an allowance for children with disabilities (20,000–200,000 KRW per month), or a disability pension (20,000–380,000 KRW per month), depending on the beneficiary’s condition. South Korea allocates the labor demand for people with disabilities through a quota–levy system. In 2021, the average monthly income of people with disabilities in South Korea was 1.92 million KRW, or approximately 71% of that of the national average (Korea Employment Agency for Persons with Disabilities, 2020). The average monthly income of people employed at sheltered workshops is approximately 620,000 KRW. Specifically, people with disabilities employed by workplaces and protected workplaces have an average monthly income of approximately 1.16 million KRW and 460,000 KRW (approximately 43% and 17% of the income of all wage employees), respectively (Ministry of Health and Welfare, 2019). Inferred impacts of the CRPD on sheltered workshop policy in South Korea In South Korea, the CRPD was ratified in 2008. In 2011, the country submitted its first national report and received final recommendations from the Committee on the Rights of Persons with Disabilities in October 2014. In 2019, the second and third national reports, detailing efforts made to implement the Committee’s recommendations, were submitted in combination. For sheltered workshops, the two main recommendations and implementation efforts were as follows. The first recommendation is to “compensate those people with disabilities who are excluded from the benefit of the Minimum Wage Act, including through revision of the Minimum Wage Act.” The Minimum Wage Act stipulates that people with disabilities are excluded from the minimum wage. As of 2020, 9,227 people were determined to fall under the exclusion system from the minimum wage, of which more than 95% were people with disabilities employed in sheltered workshops. In an effort to implement the recommendations, South Korea adjusted the exclusion criterion from 90% to 70% (if people with disabilities’ work in sheltered workshops is assessed as more than 70% in productivity, the employer has to pay the full amount of the minimum wage) and launched a conversion support program to ensure that people with disabilities receive an appropriate wage. However, the recommendation to amend the provisions excluding people with disabilities from the minimum wage remains under discussion. The second recommendation is to “move away from sheltered workshops toward alternatives to promote the employment of people with disabilities in line with the Convention.” The Ministry of Health and Welfare’s response to this recommendation, as indicated in the national report, conveyed a willingness to create and support a protected employment environment such that people with severe disabilities, including severe developmental disabilities, who constitute the majority of people with disabilities at sheltered workshops, can transition to general labor market employment. Moreover, the Ministry also stated that sheltered workshops in South Korea are operated primarily for people with severe disabilities who experience difficulty securing employment in the general labor market. In addition, the Ministry noted that sheltered workshops and enterprises in the general labor market are run similarly in that both people with disabilities and persons without disabilities are hired (Republic of Korea, 2019).

750  Research handbook on disability policy 3.3

Taiwan: Characteristics and Practices of Sheltered Workshops in Disability Employment Policy

Historical development of disability policy in Taiwan Disability legislation and policies in Taiwan are a recent development. In 1980, Taiwan passed its first disability law, the Welfare Law for Handicapped Persons. This law focused on the establishment of special education and care institutions rather than on disability employment services. This may be related to the fact that before the enactment of this law, the public believed that providing for people with disabilities was the duty of family. In 1997, the Welfare Law for Handicapped Persons was amended and renamed the Physically and Mentally Disabled Citizens Protection Act (PMDCPA). The PMDCPA stipulates that the government should provide people with disabilities with vocational training, employment services, and community care services. These services were insufficient and the actual beneficiaries were few. The PMDCPA was amended substantially in 2007 and renamed the People with Disabilities Rights Protection Act (PDRPA). The Act more clearly outlines employment policies for people with disabilities, including a quota system, vocational rehabilitation, supported employment, and sheltered workshops. Through its revisions, this law has been expanded to include policies on concepts that are relatively new in Taiwan, such as accessibility, independent living, and community inclusion. In Taiwan, all benefits are only applicable to certified people with disabilities. To acquire this status, an applicant must undergo a medical evaluation and obtain the “Disability Certification.” Even after the adoption of the new International Classification of Functioning, Disability and Health system in 2014, environmental factors remain rarely considered in the assessment process. Characteristics of sheltered workshops under disability employment policy in Taiwan Under the PMDCPA, social welfare, medical, and labor authorities work in concert to establish sheltered workshops. Sheltered workshops established by medical authorities, social welfare authorities, and labor authorities serve the functions of medical rehabilitation, care and cultivation, and job training and employment, respectively. Many parents have observed that although their adult children with disabilities are obligated to work in sheltered workshops, they are paid less and subjected to unfavorable conditions. This caused numerous social controversies (Chou, 2009). The 2007 PDRPA reclassified sheltered workshops as employment workplaces, which are supervised by the Ministry of Labor. People employed by sheltered workshops receive the same social insurance and labor benefits as employees without disabilities. However, their salaries are calculated according to their productivity and are lower than the minimum wage. In addition, people who wish to enter sheltered workshops under the law must meet certain criteria. These include not only a willingness to work but also an evaluation of their capability to enter the general labor market. In contrast to former practices, where applicants were evaluated only by the workshops they wished to join, the occupational reconstruction unit now performs evaluations. Controversy concerning the fact that sheltered workshops are now legally classified as general workplaces remains. Because the government only provides sheltered workshops with partial support in this regard, sheltered workshops must be profitable and employees must have relatively high job performance abilities. Thus, joining a sheltered workshop is a formidable challenge for many people with disabilities (Chou & Lai, 2009).

Does the CRPD matter?  751 Most sheltered workshops are concentrated in larger, more populated cities in northern Taiwan; often, less populated cities have only one sheltered workshop. Most sheltered workshops are located in communities where public transport is convenient and where selling products and services is easy. Sheltered workshops in Taiwan are not situated in remote locations (Chou, 2018). The number of sheltered workshops grew from 96 in 2009 to 155 in 2020. Over the same period, the number of employees with disabilities increased from 1,450 to approximately 2,100. Each sheltered workshop employs 13 people on average. Although most sheltered workshop operators are nonprofit organizations, they are required by the government to be profitable, with profitability seen as a means of ensuring funding for the payment of fair wages. This situation was confusing for the nonprofit organizations with two statuses, employers and service providers. The government has been criticized for placing the responsibility of ensuring wage protection for employees with disabilities on sheltered workshops alone. Sheltered workshops operated by enterprises account for less than 10% of the total sheltered workshops. More than half of sheltered workshops in Taiwan are currently operating at a financial loss. People with intellectual disabilities, autism spectrum disorder, and mental disabilities account for approximately 80% of all employees. Almost 80% of these employees have mild-to-moderate impairments, meaning that if the open labor market becomes more inclusive and provides adequate relevant support, their transition to general market employment would be possible. Transition from sheltered workshops to integrated and general market employment in Taiwan The rate at which people employed by sheltered workshops transition to the general labor market is low and has been declining year by year. The proportion and number of employees with disabilities making successful transitions was 70 in 2003, 58 in 2004, 39 in 2019, and 37 in 2020. In 2016, the Ministry of Labor published a guide designed to help sheltered workshops prepare for transferring employees with disabilities to the general labor market. The Ministry also distributed bonuses to sheltered workshops each time an employee was transferred to a general workplace for more than 1 month, but this was ineffective. The Ministry of Labor is often blamed for not making good use of the quota system or providing increased support for people with disabilities (e.g., reasonable accommodations in the general workplace), with the consequence being poor transition outcomes (Chou, 2021). Wages and allowance for people with disabilities in Taiwan The wages of employees in sheltered workshops are based on their production capacity rather than on the legal minimum wage. Methods by which production capacity are calculated depend on the industry to which sheltered workshops belong; a wage calculation standard remains to be established. The average monthly salary of employees with disabilities in sheltered workshops is between NT$6,000 and NT$7,000. Overall, 87% of employees are paid below the poverty line (approximately NT$13,000), and only approximately 0.4% of employees with disabilities make minimum wage (equivalent to NT$23,800 per month). People employed by sheltered workshops can receive a living allowance, which in Taiwan is combined with social assistance benefits, if they meet the criteria. Through a means test, the income situation of people with disabilities is divided into three types, and then one of four subsidies can be granted according to their disability level. However, not all employees with disabilities can receive allowances. Moreover, the monthly income of many employees

752  Research handbook on disability policy with disabilities, even with the addition of a living allowance, remains insufficient to support independent living. Nevertheless, many parents of employees with disabilities are satisfied with the sheltered workshop policy on employment because they believe any type of employment is preferable to complete dependence on others, regardless of whether the employment provides income protection (Chou, 2012). Inferred impacts of the CRPD on sheltered workshop policy in Taiwan Taiwan is not a member of the UN, but under the strong advocacy of many disability groups, the Legislative Yuan passed the Act to Implement the Convention on the Rights of Persons with Disabilities in 2014. The initial report was submitted in 2016, and in 2017, five committees were invited to visit Taiwan to review it. The Concluding Observations of the first CRPD Report stated that sheltered workshops failed to adequately prepare employees for entry into the general labor market and required improvement. The Ministry of Labor has implemented some measures related to the employment of people with disabilities, such as rewarding sheltered workshops that transfer employees to the general labor market. Owing to a lack of policies for enhancing market inclusion, the results have not been favorable; the number of employees with disabilities making transitions has decreased on an annual basis. The Ministry of Labor does not seem to be prepared to make more substantial improvements, such as by mandating reasonable accommodations for people with disabilities in workplaces. Overall, the impact of the CRPD on Taiwan’s sheltered workshop policies has been negligible.

4.

COMPARISON AND DISCUSSION

Japan signed the CRPD in 2007 and ratified it in 2014. South Korea signed and ratified the CRPD in 2008. Because Taiwan is not a member of the UN, the CRPD was directly approved in 2014. Several commonalities become evident when comparing the sheltered workshop policies for people with disabilities modified or formulated after CRPD implementation in Japan, South Korea, and Taiwan. First, although Taiwan’s sheltered workshops, South Korea’s Type I sheltered workshops, and Japan’s Type A sheltered workshops are all considered workplaces, none pay employees the minimum wage. For most people employed by sheltered workshops in all three countries, obtaining the same economic security as workers without disabilities employed in the general labor market is challenging. Moreover, although people with disabilities can be provided allowances, pensions, and social assistance benefits in all three locations, certain payment requirements must be met and levels of payment vary considerably. Whether people employed by sheltered workshops can live independently on their salaries and these additional payments remains unclear, but the likely answer is that they cannot. Second, Japan, South Korea, and Taiwan all have basic medical insurance and pension systems for people working in sheltered workshops, regardless of whether employment or vocational training is the function of these workshops. However, in all three locations, relatively few other labor security systems, such as unemployment insurance and benefits for occupational disease or injury for employees with disabilities, are in place. This demonstrates that social protection for people employed by sheltered workshops remains unequal with that

Does the CRPD matter?  753 provided to employees in the general labor market. However, some social integration conditions are relatively favorable; for example, most sheltered workshops are located in, rather than far away from, communities. Moreover, the number of people employed at each sheltered workshop is relatively small. Third, the situation of transitioning employment from sheltered workshops to the general labor market is generally not a priority. In Japan, approximately 20,000 people with disabilities transfer from sheltered workshops to the general labor market each year. However, in Taiwan and South Korea, this number is less than 40 and approximately 400, respectively. The factors that influence such transitions are related not only to the support to people with disabilities for training in sheltered workshops but also to the attitudes and practices of the general labor market with respect to employing people with disabilities. People with disabilities may have more opportunities to work in the general labor market if the environment is relatively barrier-free, including social attitudes, and makes reasonable accommodations. Although Japan, South Korea, and Taiwan all have antidiscrimination legislation, the transition from sheltered workshops to the general labor market continues to occur at a suboptimal rate. The relevant laws or social change do not appear to facilitate people with disabilities’ inclusion in the labor market. A relatively long period elapsed between Japan’s signing and ratification of the CRPD, and during this period, a considerable amount of legal preparation for implementing and adjusting the CRPD occurred. Such preparation seems to be reflected in Japan’s disability employment policy. Although the monthly salary paid to people employed by both types of sheltered workshops (Type A and Type B) in Japan remains under the monthly minimum wage, the number of employees who transition from sheltered workshops to the general job market is substantially higher than in South Korea and Taiwan. South Korea has three types of sheltered workshops, but the people’s capacity, rather than their rights, is considered the most essential evaluation criteria for employment in these workshops. In Taiwan, only one type of sheltered workshop offers employment, and the low salaries they offer, along with the low transfer rates they have attained, are contrary to the core values of the CRPD. After their first national reports, the governments of Taiwan and South Korea attempted to increase the salaries of people employed by sheltered workshops through various methods, but the results have fallen short of the expectations inherent to the recommendations of the Committee on the Rights of Persons with Disabilities. Both South Korea and Japan have sheltered workshops for training and rehabilitation. A focus on long-term training and rehabilitation can, somewhat perversely, delay or prevent people with disabilities from entering the general labor market instead. The difficulty with entering the general labor market is most likely a primary reason for the ongoing existence of sheltered workshops in remote locations offering low pay. Thus, government interventions to improve the inclusion of the general labor market are needed. Furthermore, barrier-free workplaces and adequate support for employees with disabilities also require government resources and the expenditure of company resources. Making rapid progress in this regard may be relatively difficult for countries and regions in East Asia with productive welfare regimes, including Japan, South Korea, and Taiwan. This is because the essential motivator of such regimes is the implementation of social welfare policies in the interest of economic development rather than in the interest of human rights (Chou, 2021). In addition, attitudes and policies about sheltered workshops seem to maintain a stable position in many East Asian countries, mainly owing to the preferences of many parents of adults with disabilities. This support stems from various considerations, including the fact that

754  Research handbook on disability policy sheltered workshops are multifunctional places that combine care and work, the lack of inclusion in the general labor market, and the fact that many parents do not wish for their children to face the pressure of participating in the general labor market. Hence, this support for sheltered workshops is based on the consideration of protecting adult children with disabilities and can also be regarded as a manifestation of familism in East Asia. Thus, for the CRPD to be successfully implemented in East Asia, this system in which economic development is promoted and in which parents’ preferences take precedence over the rights of people with disabilities must first be confronted.

REFERENCES 中川純「福祉的就労から一般就労への移行（第3章5節）」、永野仁美、長谷川珠子、富永晃 一編『詳説障害者雇用促進法：新たな平等社会の実現に向けて（増補補正版）』（弘文 堂、2018年）297–307頁=Nakagawa, Jun. (2018). Transition from sheltered workshops to competitive employment. In Hitomi Nagano, Tamako Hasegawa & Kouichi Tominaga (Eds.), Commentary (Kommentar) on Employment Promotion Act for People with Disabilities: Towards Realization of Equal Society (pp. 297–307). Kobundo. 長谷川珠子、石﨑由希子、永野仁美、飯田高著『現場からみる障害者の雇用と就労：法と実 務をつなぐ』（弘文堂、2021年）=Hasegawa, Tamako, Ishizaki, Yukiko, Nagano, Hitomi & Iida, Takashi. (2021). Employment for the Disabled from Worksites. Kobundo. 厚生労働省『障害者の就労支援対策の状況』(2020年)=Ministry of Health, Employment and Welfare. (2020). Current Situation of Disability Employment Policies. https://www.mhlw.go.jp/ ​ ​ ​ ​ ​ content/000605985.pdf ​ ​ 小西啓文・中川純「障害と労働法（第7編）」、菊地馨実・中川純・川島聡『障害法 （第2 版） 』』（2022年、成文堂）145–174頁=Konishi, Hirofumi & Nakagawa, Jun. (2022). Disability and employment law. In Yoshimi Kikuchi, Jun Nakagawa & Satoshi Kawashima (Eds.), Disability Law (2nd ed.) (pp. 142–165). Seibundo. Chou, Yi-Chun. (2012). An analysis on development of sheltered workshops for people with disabilities in Taiwan: Perspective of neo-liberalism (從新自由主義觀點分析台灣庇護工場發展). Soochow Journal of Social Work, 23, 81–120. Chou, Yi-Chun. (2018). Sheltered workshop policies for people with disabilities in Taiwan and Japan. In G. Wansing, F. Welti & M. Schäfers (Eds.), The Right Work for People with Disabilities: International Perspectives (pp. 343–357). Nomos-Verlag. Chou, Yi-Chun. (2021). Care or employment? A comparison of post-UN CRPD sheltered workshop policies in East Asia and Germany. In Michael Ganner, Elisabeth Rieder, Caroline Voithofer & Felix Welti (Eds.), The Implementation of the UN Convention on the Rights of Persons with Disabilities in Austria and Germany (pp. 193–204). Innsbruck University Press. Chou, Yi-Chun & Lai, Jin-Lian. (2009). The Analysis of Sheltered Workshops in Taiwan (台灣庇護工場 現況分析：理論與實務). The Syn-Lu Social Welfare Foundation. Degener, T. (2017). A new human rights model of disability. In The United Nations Convention on the Rights of People with Disabilities (pp. 41–59). Springer. Ferraina, S. (2012). Analysis of the Legal Meaning of Article 27 of the UN CRPD: Key Challenges for Adapted Work Settings. EASPD. Gill, M. (2005). The myth of transition: Contractualizing disability in the sheltered workshop. Disability & Society, 20(6), 613–623. Korea Employment Agency for Persons with Disabilities. (2020). Survey on economic activity status of the persons with disabilities. Lee, Hyekyung, Lee, Sooyong, & Lee, Seonhwa. (2020). Research on the Direction of Vocational Rehabilitation Facilities. Korea Disabled People’s Development Institute. May-Simera, C. (2018). Reconsidering sheltered workshops in light of the United Nations Convention on the Rights of Persons with Disabilities (2006). Laws, 7(1), 6. Ministry of Health and Welfare of the Republic of Korea. (2019). Status of Public Assistance Recipients.

Does the CRPD matter?  755 Quinn, G. & Degener, T. (2002). Human Rights and Disability: The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability. Office of the High Commission for Human Rights, Geneva. http://193.194.138.190/disability/study.htm ​ ​ ​ ​ ​ ​ ​ Republic of Korea. (2019). The Combined Second and Third Periodic Report under the Convention on the Rights of Persons with Disabilities. Weiss, T. C. (2014). Sheltered Workshops: History and Definition Disabled World. https://www ​ ​ .disabled-world.com/definitions/sheltered.php ​ ​ ​ ​ ​ Yoo, Eun-Ju. (2018). Employment Incentives for Vocational Rehabilitation Facilities. Employment Development Institute.

64. Disability as an enabler of career success and inclusion1 Daniel Samosh, Mukta Kulkarni, Alecia Santuzzi and Brent Lyons

One in five Canadians 15 years of age and over has a disability (Morris et al., 2018). In the workforce, these individuals are more likely to hold entry-level positions in comparison to Canadians without disabilities (Turcotte, 2014). Further, they are less likely to be prepared for the school-to-work transition (Till et al., 2015) and are more likely to be living in poverty (Morris et al., 2018). Prior literature provides several reasons for these disparities, such as employers’ ill-founded concerns about hiring and accommodation costs, safety risks, and negative reactions to disability among co-workers and customers (Bonaccio et al., 2019; Lengnick-Hall et al., 2008), performance stereotypes (Ren et al., 2008), unconstructive feedback (Kulkarni & Gopakumar, 2014), and inflexible organizational policy (Samosh, 2021). In light of these barriers, recent studies have illuminated several enablers of career success specific to people with disabilities such as career self-management strategies (Kulkarni & Gopakumar, 2014), identity management (Lyons et al., 2017; Santuzzi et al., 2019), idiosyncratic deals (Brzykcy et al., 2019), and access to social networks (Kulkarni, 2012). Policy is another potential avenue to mitigate barriers (Stone & Colella, 1996), although evidence on the influence of policy upon economic inclusion is mixed (Acemoglu & Angrist, 2001; DeLeire, 2000; Kruse & Schur, 2003). In Canada, accessibility legislation called the Accessible Canada Act (ACA) received royal ascent in 2019. Some provinces have their own accessibility legislation as well, such as the Accessibility for Ontarians with Disabilities Act (AODA) (2005), and the Accessibility for Manitobans Act (AMA) (2013), which aim to increase accessibility and inclusion in broader society and within employment spaces. However, accessibility and employment barriers persist—prompting Onley (2019) to refer to accessibility as a “mirage” in a recent legislative review of the AODA. Perhaps due to an emphasis on barriers and their removal, both the academic literature and Canadian policy tend to overlook adaptive and valuable experiences of disability that can benefit career success. Yet, within Canadian policy this is changing. Canadian policymakers recently reframed the phrase “nothing about us without us” as “nothing without us” (Government of Canada, 2020)—positing that people with disabilities should be a part of all decision-making and policy processes (Laroche, 2019). In a recent report on the implementation of this vision, Yazmine Laroche, Canadian Deputy Minister of Public Service Accessibility, wrote, [The COVID-19 pandemic] has also shown that persons with disabilities can lead the way in innovative approaches to solution design, whether in the built environment, information and communications technology, or effective culture change strategies, due to their lived experience of overcoming barriers in many domains of daily life. (Government of Canada, 2020)

756

Disability as an enabler of career success and inclusion  757 Here, we see a new foundation for the Canadian policy environment, wherein disability is perceived not only as a problem (either of the individual or society) but as a potential source of strength. Prior literature includes several examples of positive experiences of disability at work. For instance, research illustrates that people with disabilities can craft novel careers as they redefine career success and find renewed meaning and purpose in their work following acquired disability (Baldridge & Kulkarni, 2017). The experience of disability can also support the development of deeper relationships between practitioners and clients in healthcare settings (French, 1991). Such affirmative accounts of disability remain understudied and present an important opportunity to develop a more complete appreciation of the role of disability in career success and policy. To contribute to this nascent area of research and policy, we draw upon the affirmative model of disability which challenges negative views of disability as either tragic or exclusively barrier-focused (Swain & French, 2000). We supplement our understanding of the affirmative model of disability by drawing upon the theorizing of resource conservation (Ng & Feldman, 2014a, 2014b) and resource cultivation which can help individuals obtain valued career states (Spurk et al., 2019). We ask, how does disability serve as an enabler of positive outcomes in the careers of people with disabilities as well as for organizations and society more generally? To answer this question and explore its policy implications we conducted semi-structured interviews with 21 people with disabilities in Canada. Our findings suggest that the experience of disability can serve as ability via promoting greater effectiveness, expertise, and informed decision-making under certain circumstances (e.g., the very impairment allows one to work effectively under certain conditions; acquired disability influences re-evaluation of a career) and benefits organizations and society by being a catalyst for inclusive practices (e.g., disability provides an avenue to educate organizational stakeholders about stereotypes and inclusive practices). Disability, thus, can be a resource that aids career success, and thereby inclusion within mainstream workplaces. The present findings contribute to the literature on career success of people with disabilities and policy in the following ways. Most prior career success research has focused on barriers encountered by people with disabilities. That research views disability as a deviation from some social norm, correctable by medical intervention or rehabilitation (Oliver, 1983) or as an outcome of social and environmental barriers (Shakespeare, 2006). We offer a complementary repositioning of that narrative by proposing disability as an enabler of success under certain circumstances. Our view goes above and beyond past research on career success facilitators of people with disabilities, which highlights individual strategies, social networks, organizational factors, and societal influences (Samosh, 2021). Instead, we highlight how the experience of disability itself can build the capacity for career success and inclusion. We thus talk about success not despite disability, but because of disability. This repositioning is aligned with the recent shift towards a “nothing without us” perspective in Canadian policy, identifying people with disabilities as necessary contributors to all decisions and policy processes. We conclude this chapter by offering theoretical and policy implications from this affirmative perspective.

758  Research handbook on disability policy

LITERATURE REVIEW Affirmative Model of Disability and Disability Policy The affirmative model of disability emphasizes that disability, as a form of human diversity, has the potential to proffer positive contributions to individual and collective experience (Swain & French, 2000). This perspective rejects presumptions of disability being associated with tragedy, dependency, or abnormality. Importantly, though largely focused on positive experience, this model is not about the benefits of marginalization, people “coming to terms” with disability, people with disabilities as inherently nice or “lovely” people (Cameron, 2014; Swain & French, 2008b), or the universal acceptance and celebration of disability diversity (Swain & French, 2008b). This model poses a contrast to the more dominant medical and social models of disability that Canadian policy is often rooted in. The medical model positions disability within the individual (Areheart, 2008) and suggests corrections via rehabilitative efforts to bring individuals closer to a socially defined norm (Oliver, 1983). This perspective is found in Canadian policy, within programmes such as the Canadian Pension Plan Disability Benefits (Office of Disability Issues, 2003). Conversely, the social model spotlights disabling social and environmental factors (Shakespeare, 2006). The social model is foundational to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006) and accessibility legislation in Canada, including the ACA, AODA, and AMA. Alternately, the affirmative model builds from the social model to imbue the individual with positive agency. That is, the affirmative model speaks to the individual’s potential to develop a positive lived experience that may include, but extends beyond, the navigation of barriers (McCormack & Collins, 2012; Swain & French, 2000). Positive experiences of disability are largely absent from Canadian policy, although as previously noted this perspective is growing in Canada (c.f. Laroche, 2019). Research on the affirmative model of disability has primarily focused on disability activism and arts (Eisenhauer, 2007; Sutherland, 2008), healthcare contexts (French & Swain, 2008; McCormack & Collins, 2012; Swain & French, 2008a), and lived experience more generally (Swain & French, 2000), with minimal emphasis on work contexts. This literature highlights an array of affirmative experiences, such as positive expressions of identity through poem and song (Brandon & Elliott, 2008), insight into patient experience and other aspects of healthcare work (French, 1991; Spain, 2008), and positive personal growth following the onset of acquired disability (Swain & French, 2000). Indeed, the very interpretation and meaning of the word disability can be reconceptualized when considering such experiences (McCormack & Collins, 2012). This research is our springboard for examining disability in relation to career success and policy more broadly. Disability and Career Success Career success, often characterized as salary, promotion, and career satisfaction, is influenced by an array of factors (e.g., Seibert & Kraimer, 2001; Seibert et al., 2001; Stumpf, 2014). Extensive reviews of the career success literature (e.g., Ballout, 2007; Spurk et al., 2019) suggest that there are multiple and heterogeneous theoretical strands that inform this body of research. For example, Spurk and colleagues (2019) noted that existing reviews

Disability as an enabler of career success and inclusion  759 offer diverse assessments of the utility of theoretical frameworks, including valence– instrumentality–expectancy models, network theory, stress – coping paradigm, and role theory (e.g., as suggested by Feldman & Ng, 2007), person–environment fit theory (e.g., as suggested by Ballout, 2007 and Wang & Wanberg, 2017), as well as life span career development theory and boundaryless career theory (e.g., as suggested by Wang & Wanberg, 2017). Underlying these views is the idea that conserving (Ng & Feldman, 2014a, 2014b) and cultivating resources (e.g., knowledge, experience) which help individuals obtain valued career states, objective or subjective, can help us understand career success, including its process, antecedents, and outcomes (Spurk et al., 2019). We draw upon the theorizing of conserving (Ng & Feldman, 2014a, 2014b) and cultivating resources (Spurk et al., 2019) and note that such resources have been examined in the scant albeit growing literature regarding career success among people with disabilities. The most recent review of the disability careers literature offers the metaphor of a “three-legged stool” as a model for how people with a disability can be successful in their workplace through experiences created by themselves alongside external factors (Samosh, 2021). The three legs include (1) career self-management strategies (King, 2004), such as utilizing advocacy to navigate harmful myths and stereotypes and demonstrating adaptability (Kulkarni & Gopakumar, 2014); (2) social networks, which allow for instrumental and emotional support (Baldridge & Kulkarni, 2017); and (3) contextual resources, such as employer flexibility and proactivity (e.g., Araten-Bergman, 2016; Kulkarni, 2016) as well as societal factors such as disability policy (Kruse & Schur, 2003; Santuzzi & Waltz, 2016). Prior research has thus illuminated antecedents of career success among people with disabilities. Yet, this literature often assumes that the experience of disability is wholly negative and must be buffered by a worker’s career management strategies or social influences (e.g., networks, managers’ human resource practices, and supportive climate) to facilitate career success. We abandon that assumption and examine disability as a potential enabler of career success, with implications for disability policy in Canada.

METHOD Sample Twenty-one individuals (see Table 64.1) who self-identified with one or more disability (e.g., physical, sensory, speech, learning, neurodevelopmental, and mental disability) participated in one-on-one interviews conducted by the first author.2 Eight interviewees had an acquired disability and 13 had a congenital disability. Interviewees worked in the private, public, and non-profit sectors and held a range of positions (e.g., business owner, manager, professor, and mayor). We thus had access to a unique sample of interviewees with experience of objective career success (e.g., high-paying jobs and advanced careers). This was the result of purposive and snowball sampling. Data Collection We followed the semi-structured interview guidelines of Spradley (1979), beginning with grand tour questions about interviewees’ careers (e.g., “Can you tell me about your work?”).

760  Research handbook on disability policy Table 64.1

Interviewee information

Interviewee

Type of Workplace Alvin Marks* Small business Harry University

Position(s)

Wolfgang University and Zimmermann* research institute Steve Mantis* Small business, non-profit, and political party Julia Government Max Brault* Government

President and executive director Owner, manager, executive, board member, electoral candidate Senior executive positions Manager and executive positions Executive and consultant positions Manager

Government and non-profit Aviation and insurance corporations Claire Multi-national corporation Maeve Disability management and healthcare Sara Non-profit Linda Niksic* Government Anthony College Frisina* Marco Small business, Pasqua* non-profit, gaming industry Luna Bengio* Government Jeff Willbond* Michael MacDonald*

Doug Diane Bergeron* Steven Estey*

Non-profit Government and non-profit International disability rights organizations Joan Westland Government, Eby* non-profit, international organizations Ian Manion* Healthcare, international network David Onley* Government and university

Owner and manager Professor

Executive Manager and director

Gender Impairment Type Man Speech Man Physical and learning Man Physical

Onset of Impairment*** Congenital Congenital

Man

Acquired

Physical

Acquired

Woman Physical Man Physical

Congenital Congenital

Man

Physical

Congenital

Man

Sensory

Congenital

Woman Physical and Acquired sensory Woman NeuroCongenital developmental

Manager Senior advisor Advisor

Woman Sensory Woman Physical Man Physical

Acquired Congenital Congenital

Owner, manager, executive, board member

Man

Physical

Congenital

Manager and executive positions Manager Manager and executive positions Independent consultant

Woman Sensory

Congenital

Man Sensory Woman Sensory

Acquired Congenital

Man

Acquired

Mayor, executive, consultant

Woman Physical

Congenital

Executive positions

Man

Mental

Acquired

Physical

Acquired

Lieutenant governor, head Man of independent review, and senior lecturer

Sensory

Notes: * Indicates real names of respondents. **Since some of our respondents did not share age at onset of disability, we have maintained a broad distinction between congenital and acquired disability.

Disability as an enabler of career success and inclusion  761 Questions were later narrowed to capture experiences of disability in relation to career trajectory so that interviewees could focus on the experiences that they felt were most pertinent (e.g., “What role, if any, has disability played in your work?”). Interviews lasted 60 minutes on average. A mixture of in-person (n = 3), telephone (n = 17), and video conferencing technology (Skype) (n = 1) were used. The mode of communication used was based on interviewee needs and preferences as well as the geographical distance between interviewer (the first author) and interviewee. An ASL–English interpreter was employed for one of the interviews and in another the interviewee communicated orally while the interviewer typed questions through Skype. Data Analysis Interview data was analysed following the guidelines of Charmaz (2006). To begin, we used line-by-line coding. For example, Harry commented: When I go into a physical environment for the first time, I have to stop at the door, and I have to analyse the environment, and I’ve just taken that ability to analyse physical environment and translated it into my work.

This comment was coded as “analytic focus developed from disability experience”. We also developed lower-level codes through segment-by-segment coding. For example, Michael stated: There’s this ongoing informal joke that I have with my family and close co-workers, that I actually perceive the hearing-enabled people as the population with a disability, because they can’t control the noise. I can control the noise. If I want to concentrate, I just flip my hearing aid off and I have total silence, and I can zoom in on the task at hand without distraction.

This segment was coded as “can control distracting work environment because of hearing impairment”. The constant comparative method (Glaser & Strauss, 1967) was used to construct abstract themes based on the data. We also engaged in “member checks” to ensure the accuracy of researcher interpretations (e.g., Lincoln & Guba, 1985), and we shared our results with all interviewees. We asked them to identify any misinterpretations and elaborate on any points that they felt were important. At this stage, interviewees were given the option to be named or maintain anonymity. This was done to ensure that interviewees maintain primary ownership over the experiences that they shared. The impetus for this decision is found in the perspective of “nothing about us without us” (Charlton, 1998), which holds that people with disabilities should be meaningfully included in practices that influence them (e.g., research, policy, and programmes). In Table 64.1, we have indicated actual names of respondents, denoted by the asterisk symbol.

FINDINGS Data pointed to two broad themes. First, interviewees noted that disability served as an ability under certain circumstances (e.g., disability made the interviewee the best suited for a certain task or allowed for the development of career-relevant analytic and social skills). Second,

762  Research handbook on disability policy disability allowed interviewees to disrupt organizational narratives and create positive organizational change (e.g., the busting of ability stereotypes and the implementation of inclusive practices). Disability as Ability Disability was seen as an asset or ability which benefited individual career success through two pathways. First, an interviewee’s particular impairment, or health condition, resulted in greater ability in some cases. That is, interviewees suggested that their very impairment directly caused them to succeed at their workplaces. Second, interviewees highlighted that they had developed career-relevant skills from the experience of individual and social disability barriers. Reflecting on her early career experiences, Maeve explained that her neurodevelopmental impairment had benefited her work that required multitasking. Maeve explained the positive impact of impairment on her career progression: My disability helped me significantly in that role, because it was about multitasking and constantly being pulled in many different directions. With my disability, I’m like that all the time anyway, so I felt [my disability] helped me. [My disability] helped me to pay particular attention to detail. When I was in that position, within a year I became a supervisor. (Maeve)

She further described the complex relationship between impairment and her work during the course of the interview: My disability was a hindrance, but I have learned how to use it to my advantage. I struggle with so much throughout the day, trying to remain focused. So why don’t I try and use it to my advantage and get as much done as humanly possible and jump from task to task? In that way, I think it has actually helped me be better. (Maeve)

For some interviewees who identified as deaf or hard of hearing, the ability to detach was described as beneficial. Steven explained how this was advantageous in emotionally charged meetings at the United Nations, among culturally and linguistically diverse groups: I spent a lot of time in crowded meeting rooms and sometimes people would get very emotional and upset. Tempers would run high. But because I was not hearing, I was able to dissociate myself from a lot of that pressure and anxiety… These are people who were coming from all over the world. We’re working in English, but many of them had English as a second or third or fourth language, and they have different cultural traditions as well. It was very useful for me to be detached in those situations. I was able to learn a lot about what people were thinking and feeling by observing their physical demeanour and their body language…sometimes it’s not what a person says, but how they say it. It provided a different perspective. (Steven)

In addition to direct benefits of the impairment itself, interviewees also explained that the lived experience of disability benefited their professional advancement via influences upon task performance, social skill, and career-related decision-making. Interviewees stated that their prior experiences with disability had taught them to “be strategic”, “plan ahead”, “adapt”, and “persevere”. They explained that these skills enabled task performance. Marco, an entrepreneur and professional speaker, described the influence of disability on his speaking ability:

Disability as an enabler of career success and inclusion  763 I spent about the first 13 years of my life in hospitals because I had 13 surgeries from age 0 to 13. I think that the maturity I had to face—talking primarily with adults, because I was in hospital for so long—really showed me the power that words can have. The gift of gab, so to speak. Where I had disadvantages in my physical ability, I gained with my speaking ability. (Marco)

Steve built from Marco’s description and explained that his own accommodations were an “excellent management technique” that benefited his career through the management of his employees. This is because the use of accommodation for all employees—not just employees with disabilities—allowed Steve to see the unique strengths and weaknesses of his employees. Steve’s experience of disability resulted in the application of accommodation as a managerial “problem-solving” tool: …the whole idea of accommodating disability is an excellent management technique. It allows you to look at any one of the staff you have working with you, and see where their strengths are, play to those strengths, and accommodate the weaknesses. That is going to make that employee more productive. (Steve)

Steve further explained how he had gained “problem-solving skills” via his lived experience of disability. Using an analogy of how he had learned to tie shoelaces with one hand, Steve described that his problem-solving ability benefited his career, as he had “figured it out”—how to “think about things in a different way”, which was an important skill when faced with a changing workforce. Claire commented that her experience of acquired physical and sensory disability had taught her to be mindful and focus her time and energy: I used to be the queen of multitasking, which is not that great. Looking back, you’re robbing the person or the people that you’re with of your full presence. These days, I have had a shift. Because of my physical condition, because my brain works differently, I have to be more mindful in all of my interactions. I am not looking at email while I am on the phone…I am much more focused, and much more deliberate with where I direct my time and energy. (Claire)

Alongside aforementioned task-related benefits, interviewees also suggested that social skills they developed in relation to disability were of importance to their work. Interviewees’ understanding of “empathy” and “authenticity”, which were associated with their lived experience of disability, helped them to support co-workers and other employees. Luna explained how her empathy, gained because of her sensory disability, benefited workplace relations: I find having a disability makes me more empathetic. When somebody walks in my office, and they can walk in and interrupt 20 times…I will always be there to talk to them, unless there is some real emergency. I really try to see people as people, not just as employees. I tend to see their life situations and know that has an impact on what they do and how they are at work, because you just don’t leave your life behind you when you get to work in the morning. (Luna)

Interviewees articulated that disability benefited their workplace leadership. Harry explained that his physical and learning disability, as well as being open about them, helped his career and made him a better leader: I think that disability makes you a stronger leader, because if you know your weaknesses you can lead by example—with transformational leadership. If you know your weaknesses, you will also know

764  Research handbook on disability policy your strengths and how to use your weaknesses to your advantage. To be more authentic, like you are walking the talk. I think that I come off as more authentic because I do not hide anything. (Harry)

Acquired disability had the potential to influence career choices and personal experience in a positive manner as well. Some interviewees highlighted that they were “lucky”, and that they “wouldn’t be here today” if they had not acquired a disability midway through their careers. Claire’s acquired disability was described as a part of how she became a highly successful disability advocate in the corporate world. She noted that her experience with disability pushed her “on the right path”, and that “it took [disability] to educate me and re-evaluate my life and my life’s work”. Disability thus resulted in a shift towards more meaningful and impactful career choices for these interviewees. As seen through the description of the interviewees’ backgrounds, these meaningful and impactful career choices had also been associated with tangible and objective success. Disability translated into ability for interviewees and helped advance their careers. Specifically, interviewees indicated that their impairments directly benefited their work in some contexts and that they had become more adaptable, analytic, focused, empathetic, and authentic as their self-awareness allowed them to approach tasks and people effectively. Disability Promotes Inclusion Interviewees’ opportunities to effect change in their own work environments, which paved the way for more inclusive pathways to career success for themselves and their colleagues, were enhanced by their experience of disability. Referring to her advocacy work, Joan highlighted that “it makes the message a lot more difficult to ignore, when it’s the people themselves speaking about their issues and concerns”. David commented that his disability resulted in him receiving the “first opportunity” to conduct interviews with people with disabilities in his former job as a journalist. Jeff highlighted the role of lived experience during a discussion about his disability policy work. He explained how others would perceive his experience: “This guy knows what he’s talking about. Not only is he coming at it from a professional human resources perspective, but he’s talking about life experience as well. Who better, then, to draft guidelines on grounds of discrimination, when he can talk from these different perspectives?” Some interviewees identified disability as a “tool” to not only “stand out” and be “unique” but also to bring about broader change. Max described how he was likely stereotyped as less competent because of his disability early in his career. However, his supervisors and colleagues were impressed when he demonstrated his ability and advanced in his own career, which he felt resulted in their reflection on disability stereotypes: In my 20s and 30s there was the perception that people didn’t think I knew what I was talking about— that I couldn’t cut the mustard. And then, all of a sudden, I started proving that I could. And people reacted, “Oh, did I think that because he was in a wheelchair?” And I would bet that about half of those people went, “Yeah, I think I misread this guy because I saw the wheelchair before I saw the individual.” (Max)

Diane narrated a story of how her lived experience of disability was an important part of her advocacy work for accessible elections. When addressing a parliamentary committee on this topic, she made a strong point by bringing notes in Braille and stating:

Disability as an enabler of career success and inclusion  765 “What if I told you that what you hold in your hands is a document that includes all of the information that you are going to need in order to make an educated, informed choice on who you believe you should vote for to be the next leader of our country? And that’s all the information you have. Now, you take that document, and you go make your informed choice.” Of course, they were all looking at each other and looking at this Braille document thinking, “Well, it’s a bunch of dots…” And I said, “That is the position that you put people with sight loss in, every single election, when all you provide us with is written documentation on the platform, inaccessible websites and inaccessible debates.” (Diane)

Interviewees who had advanced in their careers and held senior positions within their organizations used their status to promote disability-specific education and “myth-busting” within their organizations. They expressed optimism that the visibility of their disability and career success could reduce stereotyping among employees, co-workers, and organizations more generally, such that “hopefully, when someone sees a person in their organization with a disability, they’ll say, ‘Well, they can do it.’” Reflecting on her career, Julia explained: I have been able to work with people and achieve two things. One, to enable them to see me as a human being, not as a disability. And there are a lot of people who just see me as someone who does a great job. And the other thing is to educate people about accessibility, by having them think “How do we make this accessible?” ... I know that there has been a kind of ripple effect. Through my presence [in upper management], people are thinking more. Those have been the benefits: myth-busting, on the one hand—demonstrating that people with disabilities can achieve a lot—and then opening people’s eyes to issues around accessibility. (Julia)

Interviewees reported that disability generated opportunities to be a “role model” and “support” others with and without disabilities at work. Interviewees highlighted how they mentored junior employees with disabilities, focusing on how they too “can have a leadership career”. Steve shared his perspective on creating opportunities for other people with disabilities to take risks and succeed in their own careers: It’s more than seeing the heroes and saying, “We can all be a hero.” No, we can’t. That’s not the way the world works. It’s a nice dream, but that’s not how it works. There are these structural things, these barriers. So, you create opportunities for people to do things that they haven’t done before. And see, they can do it.

Linda connected her focus on supporting her colleagues with and without disabilities directly to her experience of disability. Linda’s mentorship at work was directly linked with her experience with muscular dystrophy. She explained: Each day as I fight pain and keep degenerating, I try to persevere and find a way to build strength. I think that’s what muscular dystrophy gives me—it helps me to be in tune with the struggle that I’m in and how I have to build strength all the time. And in that, I’m able to help others build strength in themselves. (Linda)

The experience of disability allowed the interviewees to position themselves and be accepted as credible advocates of inclusive practices, as they could bust ability myths that organizational stakeholders may have held about people with disabilities, and as they could help others build strength in their respective abilities. Overall, findings suggest that disability was a potential enabler of success for present interviewees. The very experience of disability resulted in beneficial outcomes for individuals and their organizations.

766  Research handbook on disability policy

DISCUSSION We examined how disability can serve as an enabler of career success and inclusion by conducting interviews with 21 people with disabilities living in Canada. Interviewees reported two overarching benefits of disability. First, interviewees reported disability as ability, such that the impairment itself results in greater proficiency and effectiveness under certain circumstances. This theme includes how the lived experience of disability was an important ingredient in the development of interviewees’ task-based and social skills—such as adaptability, perseverance, problem-solving, empathy, mindfulness, and authenticity—and career choices as well. Second, the experience of disability generated opportunities for interviewees to position themselves and be accepted as credible advocates of inclusion as they could bust ability myths and help others build strength in their respective abilities. These advocacy and mentorship opportunities not only benefited interviewees’ co-workers and organizations, but also had positive downstream impact upon interviewees’ career success. Theoretical Implications Prior studies, based on the affirmative model of disability, have primarily focused on disability activism (e.g., Swain & French, 2000), the disability arts movement (e.g., Eisenhauer, 2007), and healthcare settings (e.g., Swain & French, 2008b; McCormack & Collins, 2012). Through present findings, we translate the affirmative model of disability into more generalized workplace contexts as we highlight how an affirmative perspective encompasses positive outcomes for both individual career success and workplaces more broadly. Present findings allow us to offer contributions to the conversations about the career success of individuals with a disability in the following ways. To begin, findings echo as well as extend past research. Present findings reflect past research which demonstrates how people with disabilities can navigate barriers and craft successful careers (e.g., via advocacy, Baldridge & Kulkarni, 2017; Kulkarni & Gopakumar, 2014; Samosh, 2021). Our findings also extend such research by highlighting how the very disability itself can build the capacity for success for individuals, organizations, and society. Findings thus help us refer to career success not despite the disability, but because of the disability. Effects of disability need not only be theorized as differences to be managed (e.g., through identity management, Lyons et al., 2017; and accommodation, Colella & Bruyère, 2011), but as differences that can be harnessed to enable career success. Such theorizing is also counter to conventional research on the careers of people with disabilities that assumes disability hinders success. Relatedly, present findings allow us to suggest that examining the career outcomes of people with disabilities as primarily negative except for when introduced to certain policy and programmes (e.g., targeted or affirmative action-based recruitment, Kulkarni et al., 2016) runs the risk of caricaturing the disability community as a unitary group, rather than as a group of individuals who identify with a varied collection of shared and distinct career experiences. If we are to develop comprehensive models of career success for policy, researchers need to attend to both barriers and potential career-related benefits of disability. We challenge embedded assumptions of negative experiences associated with disability, and we spur conversations in the realm of career success and policy to problematize conventional assumptions of disability-related productivity (c.f., Lengnick-Hall et al., 2008).

Disability as an enabler of career success and inclusion  767 We suggest a reorientation of the literature to not only ask what policymakers can do to include people with disabilities, but also recognize the economic contributions of people with disabilities. Taken together, our findings also allow us to extend the conversations in the resource management perspective of antecedents of career success (e.g., Spurk et al., 2019) which we draw upon. That is, it is not only conventional notions of human capital in the form of education or experience (Ng et al., 2005) that allow for career success, but also unconventional forms of capital such as (dis)ability. Finally, we acknowledge that both the medical and the social models of disability proffer practicable ideas that function alongside the affirmative model in our context. For instance, the medical model is likely to result in a focus on access to healthcare and rehabilitation due to its emphasis on the individual and health limitations (McColl & Jongbloed, 2006). The social model then draws our attention towards social and environmental barriers and the obligation to mitigate them (Shakespeare, 2006). With the introduction of the affirmative model, we highlight that disability can benefit work outcomes, refocusing our attention towards individual strengths and individualized work. Mixing all three of these perspectives—the medical, social, and affirmative models—together can result in career success and policy perspectives that appreciate the potential for, not the requirement for, both positive and negative individual and social experiences associated with disability. While our work allows for these contributions, our Canadian sample may not be representative of other countries or regions, given varying cultural, socio-economic, and legislative contexts (Beatty et al., 2019). Some countries are likely to better include people with disabilities in the labour market using medical and social approaches (e.g., Kulkarni et al., 2016) and we thus need to extend the present discussion to examine how the affirmative model of disability presents outside of Canada. Further, disability is not a “master status” identity for many employees (Beatty et al., 2019), and positive experiences of disability will vary by person and environmental factors. For example, other aspects of identity and experience (e.g., career level, race, gender, education, and socio-economic status) may intersect with the experience of disability. Future research should continue this work to define the boundary conditions for our conclusions and factors that effectively facilitate the positive experience of disability among employees. Policy and Practice Implications Predicated on the finding that disability has the potential to encompass a range of positive experiences, we outline implications for policy and practice. First, policymakers can increase awareness of the idea that under certain circumstances, disability can equal ability. Beginning a dialogue about how differences can be harnessed by people with disabilities in diverse ways (e.g., benefits of being able to “control the noise” and “dissociate” from the “pressure and anxiety” of an emotionally charged meeting room) can allow policymakers to appreciate how disability’s relationship with ability need not be one-dimensional. At the societal level, with contemporary Canadian policy rooted in the medical and social models, it may be beneficial to consider not only avenues that target barriers directly, but also those that expand recognition of positive experiences of disability and the contributions of people with disabilities. These developments could take the form of annual recognition events and awards aimed at showcasing the contributions of people with disabilities as well as actors in the broader ecosystem who

768  Research handbook on disability policy support inclusion. Such recognition could increase public understanding and a cultural shift that is inclusive of the affirmative perspective. As a related point, at the organizational level, decision-makers can examine how organizational tasks can be performed differently and encourage employees to brainstorm about the same. For example, Steve’s approach to tying shoelaces proves instructive as an examination of processes may allow for hidden strengths and abilities to emerge. This shift in thinking could be realized through human resources training for managers and supervisors to reframe organizational processes. For example, during the recruitment process, hiring managers could be guided to focus more on aptitude and, when relevant, creativity and problem-solving ability, alongside prior work experience as indicators of future success. The varied benefits of lived experience may not always present themselves on résumés, especially earlier in job applicants’ careers. However, a closer look at applicants’ job-relevant skills and abilities could result in the recognition of affirmative experiences of disability during the hiring processes. The recruitment process as well as ongoing post-entry employee support activities provide key opportunities for organizations to demonstrate that diverse abilities are valued. Various strategies could be adopted with this purpose, such as training hiring managers to use affirming language when discussing topics such as disability and accommodation, and avoiding biased language that suggests difference will not be respected. Organizations can also create a pathway for disclosure and discussions about disability status that is separate from other aspects of recruitment and hiring, to minimize the anticipated stigma associated with disability disclosure and requests for accommodation in the workplace. During onboarding, managers could also be trained to approach employees about accommodations and adjustments, irrespective of the employee’s disability disclosure status. This proactive practice may mitigate uncertainty about accommodation requests, and ultimately increase the potential for disclosure and affirmative experiences at work. Next, findings suggest that organizations can benefit from supporting diverse role models, including employees with disabilities. As role models, present interviewees demonstrated their ability to provide meaningful support to their colleagues, while benefiting the development of inclusive organizational practices. Present interviewees noted that their ways of building strength can help others do the same, and can be harnessed formally and informally to build relationships, identify diverse areas of strength, as well as build community. These findings bolster the reasoning that underlies the policy framing of “nothing without us”. With the inclusion of people with disabilities in all policy decisions and processes, we may begin to promote the elusive culture change that disability policy has promised but not yet achieved (c.f. Onley, 2019). Finally, policymakers can ensure that people do not inadvertently homogenize people with disabilities when learning to reframe what disability can be and the impacts of disability. One person’s affirmative experiences of disability do not necessarily translate into or reflect another person’s experiences (Cameron, 2014; Swain & French, 2008b). Individuals’ lived experiences of disability are varied and complex (e.g., Dwertmann, 2016), and diversity within disability should be acknowledged. If not, perceiving disability as ability could result in the entrenchment of “positive stereotypes” of disability (c.f. Bolt, 2006), which are no better than the more frequently discussed negative stereotypes of disability. Taken together, crafting and promoting affirmative policy should benefit individuals, organizations, and society. Such policy would move us beyond exclusively tragic (medical) or barrier-focused (social) expectations and provide a foundation to include the often-ignored

Disability as an enabler of career success and inclusion  769 workplace benefits of disability. In combination with the medical and social models, this perspective generates an understanding of disability as a multidimensional and complex predictor of career success.

NOTES 1.

2.

Start of endnote. This work was supported by the Center for Research on Work Disability Policy (CRWDP) which is a Social Sciences and Humanities Research Council (SSHRC) Partnership Grant (Grant Number: 895-2012-10173). The CRWDP had no involvement in the conduct of the research and/or preparation of this chapter. End of endnote. Start of endnote. Note that we use disability as an umbrella term for the experience of health condi-d tions/impairments as well as related individual or contextual barriers (World Health Organization, 2011). End of endnote.

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65. Narrative 19: I want a job Sadiel Albakri

Sadiel spoke to Sally over Zoom, and she wrote it down and checked in a second meeting that he was happy with it. My name is Sadiel. I want to talk about finding a job. I want to get a part-time job or a full-time job. I don’t mind. Finding a job is really hard for people with disability. It’s even harder with COVID. During this time, you can’t even go the job office. I used to go to the job agency. I even handed in my résumé to Woolworths in my suburb. With lockdowns, I just apply online, and just wait for a response. I don’t know if I’m going to be able to get a job. One time there was 120 applicants for Woolworths. A lot of people are losing their jobs. We’re not getting much support. My perfect job would be office based. More quiet than customers, my manager would tell me what to do. I’m good at computers. I would like a retail job. But now it’s really hard to get a traineeship, unless you have good support from your carers and parents. I don’t have that much. I’ve been looking for a job for a long time. I’ve been applying since I’ve been 14 or 15 years old, that’s seven years now. I’ve been rejected a lot of times. I just keep on applying. I’m not going to give up – there’s no way I’m going to give up. I wouldn’t go back to school – they weren’t treating me good. They taught me year one work, when I was supposed to do year ten work. It was a special school. I’ve had a bit of work experience. I did Big W when I finished high school. I liked it for a few months, and then I didn’t do anything else after that. When I’m not applying for work, I ride my bike to see my brother. I go to day service programs every second Monday.

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66. Social entrepreneurship between earning a living and emancipation: impact of microfinance on people with disabilities in Kenya Yvonne Wechuli, Sellah Lusweti, Halimu Shauri and Elisabeth Wacker

INTRODUCTION The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) ‘recognize[s] the right of persons with disability to work, on an equal basis with others’ (Article 27). This statement varies with the chances given to others in a particular society. When thinking of employment and disability, we tend to think of different measures within or alongside highly formalized job markets – such as vocational rehabilitation, sheltered and supported employment, and adapted vocational education as attempts to promote the employment of people with disabilities. Consequently, the Kenyan Persons with Disability Act grants people with disabilities the right to work and be employed on equal terms with non-disabled employees (Section 12) and not to be discriminated against on the grounds of disability (Section 15). However, such regulations on employment only apply to a minority of people with disabilities who are part of the national workforce in formalized employment (KNCHR, 2014). Where formal employment is scarce, UN CRPD Article 28 on adequate living standards and social protection seems to have more salience. State parties are to ensure, among other things, access to social protection and poverty reduction programmes (Section b) and assist people with disabilities and their families with disability-specific expenses when living in poverty (Section c). In Kenya, people with severe disabilities, including children or their caretakers, are entitled to disability benefits under the National Development Fund (Section 33(2)(e)) for their upkeep and to acquire assistive devices and other services. The fund can further assist people with disabilities in setting up small businesses. To this end, they have to register with the National Council for Persons with Disabilities.1 Non-governmental Organizations (NGO) may assist in this process. However, entitlement does not equal implementation here – people with disabilities in Kenya face many barriers to accessing this fund. We are not aware of any official statistics; however, local politicians have questioned the few applications by people with disabilities. This chapter focuses on the outcome and impact of global poverty alleviation policies in the Global South targeting people with disabilities’ entrepreneurship.2 It draws on an exploratory study conducted from 2014 to 2016 by the Technical University of Munich, Germany, and Pwani University, Kilifi, Kenya, which investigated how to assess the social impact of disability-specific or inclusive livelihood promotion programmes in the Coast region of Kenya (Kuhnke, Lusweti, Shauri & Wacker, 2016a).3 To this end, the possibilities and limits of 773

774  Research handbook on disability policy applying the Social Return on Investment Approach (Lawlor, Neitzert & Nicholls, 2008) that tries to monetize social impact have been explored. In what follows, the notions of livelihood and livelihood promotion are introduced before attending to the outcome and impact of livelihood promotion programmes. The available evidence informs the conclusion of whether and which human rights can be promoted by livelihood promotion. Lastly, lessons learnt on how to track impact are shared.

LIVELIHOODS OF PEOPLE WITH DISABILITIES Livelihood promotion programmes are often targeted towards people with disabilities, due to their frequent economic marginalization. Hence, the following section explores the concept of livelihood, and applies it to people with disabilities in the Global South and Kenya, where the underlying study was conducted. The notion of livelihood is broader than a mere focus on income since earning a living is not limited to work or (formal) employment. Livelihood acknowledges that people rely not only on monetary earnings to sustain themselves (Grech, 2012). Thus, the term contains all activities that individuals, households or communities engage in to sustain a living, ‘comprising the capabilities, assets (including both material and social resources) and activities required for a means of living’ (Chambers & Conway, 1991, 6). The notion of livelihood acknowledges not only multiple sources contributing to a means of living, but also a multidimensional outcome. Earning a living affects not only the economic situation of an individual and their household – the ability to cater to different needs – but also the social status of the individual and household members (WHO, 2010). What do we know about the livelihoods of people with disabilities? There is evidence for a statistically significant positive relationship between disability and non-employment in low- and middle-income countries (Banks, Kuper & Polack, 2018). The World Report on Disability posits that ‘working age persons with disabilities experience significantly lower employment rates’ (Mizunoya & Mitra, 2013; WHO, 2011, 235) worldwide and ‘commonly earn less than their counterparts without disabilities’ (WHO, 2011, 239). Accumulated educational disadvantages can explain this employment and wage gap (Mont & Cote, 2000). In sub-Saharan Africa, the employment gap of people with disabilities compared to people without disabilities amounts to 18 per cent (data are not specifically available for Kenya). From an intersectional perspective, women with disabilities are even less likely to be employed compared with men with disabilities, and people with multiple disabilities are less likely to be employed when compared with people with a single disability (UN, 2019). However, the widely shared assumptions of a vicious cycle between disability and poverty are often only backed up by ‘guesstimates’ (Grech, 2016, 6) since data more specific than a generally plausible assumption of a mutual reinforcement is still scarce. In a systematic review on the relationship between disability and poverty in lowand middle-income countries, 81 per cent of the selected studies presented evidence for a statistically significant positive relationship between disability and poverty (Banks et al., 2018). However, this review did not account for the sizable extra costs associated with disability, as reviewed by Mitra, Palmer, Kim, Mont and Groce (2017). For social protection policies to adequately address the economic participation and well-being of people with disabilities, they must incorporate these extra costs into their design (Mont & Cote, 2000).

Social entrepreneurship between earning a living and emancipation  775 When multidimensional poverty is widespread and significant, the poverty gap between people with and without disabilities is smaller because there are many factors driving poverty in addition to disability (Pinilla-Roncancio & Alkire, 2021). Additionally, people tend to spend less on the extra needs of people with disabilities because they cannot afford them or the needed goods and services are not available (Mitra et al., 2017). However, as economies grow, if that growth is not inclusive, gaps can emerge. This is referred to as the disability development gap (Groce & Kett, 2013). Beyond disability-specific information on employment or income, information on the livelihoods of people with disabilities in the Global South can be deduced from general information on national economies. Accordingly, the livelihood component of the Community-based Rehabilitation Guidelines by the World Health Organization (2010, 1) acknowledges that ‘[p]eople with disabilities in low-income countries are affected by the same factors which cause poverty for others, but also face added disadvantages’. In a ‘majority world perspective’ (Grech, 2012), employment means working in the informal sector for most of the global workforce – for example selling agricultural products, operating a shop, or offering one’s services, e.g., as a tailor. Thus, we can assume that most people with disabilities in the Global South will equally rely predominantly on the informal sector to earn their living. They are usually not reached by government policies and programmes on employment (Chaudhry, 2018). The informal sector as an employer is criticized since the sector operates out of reach of most laws and policies that regulate working hours, payment, occupational safety, and health or social services. Moreover, the assumption that people with disabilities are only capable of informal work should be challenged (Schlyter, 2002). Nonetheless, informal work provides opportunities for earning a living and social participation for people with disabilities, who are disadvantaged in education, as formal education or vocational education certificates are not necessarily the entry point to these income-generating activities (WHO, 2010). In Kenya the informal sector employs most of the national workforce (Schlyter, 2002). People with disabilities in Kenya (and many other countries) are even more likely to be employed in the informal sector than people without disabilities (Mizunoya & Mitra, 2013). According to the Kenyan Status Report on the implementation of the UN CRPD, this is mainly due to barriers in acquiring the qualifications necessary for formal employment (KNCHR, 2014). Accordingly, the holistic notion of livelihood seems fruitful to guide social policy targeting the economic well-being of people with disabilities in the Global South, and specifically to counter their frequent marginalization. Despite its risks and challenges, the informal sector can offer opportunities for people with disabilities to earn their living in competitive formal job markets, while self-employment offers the opportunity to tailor income-generating activities to one’s abilities and needs.

LIVELIHOOD PROMOTION AS GLOBAL POVERTY ALLEVIATION POLICY The following section introduces livelihood promotion and locates such strategies in global policies for poverty alleviation. Further, evidence on livelihood promotion targeting people with disabilities is shared as well as alternatives to livelihood promotion.

776  Research handbook on disability policy Programmes trying to promote earning a living in the informal sector are referred to as livelihood promotion (WHO, 2010). Livelihood promotion is currently endorsed as a key measure of poverty alleviation in the Global South, a policy also affecting people with disabilities (Chaudhry, 2018; WHO, 2011). Such programmes cover a broad range of activities – from skills development to the promotion of self- or wage-employment through access to financial services and the strengthening of social security informally provided by relatives and local communities (WHO, 2010). Livelihood promotion can be distinguished from other strategies targeting livelihoods, namely livelihood protection and livelihood provisioning. Livelihood protection seeks to prevent a decline in livelihood security, e.g., through flood prevention or health education. Livelihood provisioning directly provides means of livelihood like food, water, and shelter, for instance, in case of emergency (Carney et al., 1999). Successful self-employment in the informal sector requires access to capital and specific business skills. However, workers without a formal job often lack access to general financial services in the form of loans, savings, or insurance. Microfinance makes these services available to people who otherwise must rely on informal loans and savings, which are deemed riskier (Martinelli & Mersland, 2010). Therefore, financial inclusion or access to financial services is seen as assistance for people living in poverty to help them overcome the latter through self-employment and entrepreneurship. ‘As originally conceived, microfinance is the provision of tiny loans to poor individuals who establish or expand a simple income-generating activity, thereby supposedly facilitating their eventual escape from poverty’ (Bateman, 2010, 1). To address the persistent unequal employment of people with disabilities, the related Disability and Development Report concludes, amongst other measures, that ‘[m]ainstream entrepreneurship development training and microfinance systems [should] include persons with disabilities’ (UN, 2019, 11). The World Report on Disability also proposes self-employment and microfinance as ‘an alternative to scarce formal employment’ (WHO, 2011, 247). Major international agencies such as the Department of International Development of the United Kingdom, the international NGO Oxford Committee for Famine Relief (Oxfam) and the United Nations Development Programme specify their approach to livelihoods in terms of sustainable livelihoods (Carney et al., 1999). Thus, livelihood promotion has a strong connection to the 2030 Agenda for Sustainable Development of the United Nations (UN, 2015). The 17 Sustainable Development Goals encompass environmental, economic, and social domains and severally reference disability (Banks et al., 2018; Pinilla-Roncancio & Alkire, 2021), i.e., in Goal 8 on economic growth and decent work for all, and Goal 10 on economic inclusion and reducing inequality (UN, 2015). Livelihood promotion seeks to improve the resilience of households and often specifically targets the diversification of income sources. For instance, in the agricultural sector, this translates to the promotion of crop diversification (Carney et al., 1999). Findings of the World Bank’s Voices of the Poor report back strategies to promote entrepreneurship and diversification: Case studies of those who have managed to improve their wellbeing indicate that entrepreneurship is the most frequent path out of poverty. Having multiple sources of income is also characteristic of many people who move out of poverty. In addition to entrepreneurship these income streams include wages and salaries, benefits from family, agricultural earnings, and access to land. (Narayan, Chambers, Shah & Petesch, 2000, 45)

Social entrepreneurship between earning a living and emancipation  777 Many microfinance programmes specifically target vulnerable groups. For instance, many seek to empower women through some form of group-based lending. Women are (stereotypically) conceived of as more reliable clients who tend to invest for the benefit of the entire family (Chaudhry, 2016; Vaessen et al., 2013). However, as explained below these conceptions are sometimes problematic. In general, the assumption that people with disabilities are less able to repay granted loans seems to be a prejudice. Mont (2014) lists two examples of microfinance programmes in southern India, where beneficiaries were as successful in paying back their loans as non-disabled beneficiaries. ‘[T]he repayment rates of disabled people are well documented, and their continual demand for loans is suggestive of the value for this endeavor’ (ibid., 34). When thinking about livelihood promotion for people with disabilities, two strategies are possible in line with the twin-track approach (mainstreaming and specializing). On the one hand, general livelihood promotion programmes can be mainstreamed to include people with disabilities, which might require sensitization, lobbying, and reasonable accommodations, for instance, in terms of assistance, since people with disabilities face access barriers to mainstream programmes. On the other hand, special livelihood programmes can be offered for people with disabilities that, for instance, emphasize peer support (Grech, 2016). However, people with disabilities do not seem to benefit from mainstream microfinance programmes (WHO, 2010), particularly concerning access to necessary start-up capital for a business via microfinance (Coleridge, 2016). In low- and middle-income countries, the employment gap of people with disabilities is more difficult to influence by regulatory policies due to the predominance of the informal sector and self-employment (Mont, 2014). ‘In that case the issue is not hiring but credit, and discriminatory processes in microfinance are hard to combat’ (ibid., 27). Also in Kenya, poverty alleviation programmes often fail to target people with disabilities, who can usually access skills-building but not microfinance programmes (Ingstad & Grut, 2006). People with disabilities face difficulties accessing Microfinance Institutions precisely due to the requirements of proving their creditworthiness. They either are excluded or self-exclude due to a lack of self-esteem, staff prejudices, and physical and information barriers in service design. The Kenyan Status Report on the implementation of the UN CRPD cites examples of people with disabilities who are denied access to start-up capital due to the prejudices of bank managers (KNCHR, 2014). Access to grants from public sources (see above), though, is described as ‘difficult due to stringent regulations, complex application procedures and the excessive requirements’ (ibid., 38). The exclusion of people with disabilities has even been described in reports about the original Grameen microfinance model in Bangladesh4 (Coleridge, 2016): ‘The loan groups are self-selecting, and it is rare for them to include a disabled person. Members join with others whom they perceive as being likely to succeed in their businesses and repay, and they tend to see disabled people as not falling into that category’ (ibid., 198). Thus, livelihood promotion comprises a wide range of activities supposed to foster sustainable – and in the Global South, thus, often diversified – livelihoods. However, such activities are frequently narrowed down to microfinance schemes, which tend to be inaccessible to people with disabilities. As the UN CRPD demands equal access for people with disabilities to all domains of life, access to microfinance is to be understood as a human rights issue on its own.

778  Research handbook on disability policy Social Impact Assessment To gauge further whether livelihood promotion measures are suitable to promote the human rights of people with disabilities, it is necessary to assess their impact. Yet, measuring the impact of livelihood promotion has been deemed challenging due to the complexity of the investigative processes and a lack of funding for impact assessment. The following section introduces the frameworks of Social Impact Assessment (SIA) and Social Return On Investment (SROI), the specific approach explored in the underlying study to assess livelihood promotion’s impact. SIA covers a broad field of different approaches and perspectives applied to determine the effects of social projects on people and communities. It can, therefore, best be described as an ‘umbrella or overarching framework’ (Vanclay, 2003, 7) that follows principles such as the use of local knowledge, the participation of all relevant stakeholders in the assessment, and the empowerment of those affected by a particular activity. ‘Social Impact Assessment includes the processes of analyzing, monitoring and managing the intended and unintended social consequences, both positive and negative, of planned interventions (policies, programmes, plans, projects) and any social change processes invoked by those interventions’ (ibid., 5). The common ground of studies applying an SIA framework is the distinction between output, outcome, and impact (Figure 66.1). Outputs are defined as ‘the direct and tangible products from the activity. […] Outcomes are changes that occur for stakeholders as a result of the activity. […] Impacts refer to the difference made specifically by your organization or project in achieving the outcomes described above’ (Lawlor et al., 2008, 22). Thus, when examining impact, the so-called deadweight – changes that would have occurred regardless of the intervention – must be taken into consideration (ibid.).

Source: Adapted from Rauscher, Mildenberger and Krlev (2015, 44).

Figure 66.1

Impact assessment model

When livelihood is more than just wage-employment or income, expected outcome and impact range from increased incomes over diversified livelihoods to financial and social empowerment. After all, earning a living affects not only the economic situation and the ability to cater

Social entrepreneurship between earning a living and emancipation  779 to different needs but also the social status of the individual and household members (WHO, 2010). When assessing material living conditions, one can distinguish different reference time frames – between short-term (income), medium-term (average yearly income), and long-term (expenses or consumption). Measurements of expenses or consumption can be a viable alternative to assessing income because they are less susceptible to fluctuations (Christoph, 2015). Multidimensional poverty measures like the Multidimensional Poverty Index, which assesses deprivations in the dimensions of education, health, and living standards, have proven more sensitive to depict the wealth gap between people with and without disabilities (Pinilla-Roncancio & Alkire, 2021). Measures of multidimensional poverty that incorporate disability-specific measures like whether a person with disabilities can obtain official documents to certify her or his disability status seem most suited to make disability-specific deprivations visible (Clausen & Barrantes, 2020). Beyond the difficulty of diligently considering all the above impact components, the Evaluation Gap Working Group (2006, 3) further detects a systematic impact assessment gap due to few incentives but many obstacles when conducting such studies, especially in high costs and lacking funds. Generating data on programme impact ‘typically demands studies that are different from programme monitoring or process evaluations. It requires impact studies’ (ibid., 2). Within the umbrella framework of SIA, the study underlying this contribution explored the application of the so-called SROI approach. This approach seeks to account for the social value created by the project, by assigning a monetary value to that change, compared to the costs of achieving it. SROI expands standard business economics methods like Return on Investment or Cost–Benefit Analysis by adding generated social value (Schober & Then, 2015). These approaches commonly view social projects or businesses as investments and try to determine profits or returns by assigning financial equivalents. Hence, the SROI approach requires adaptation when applied to a specific field. So far, it has been mainly applied to fields where socio-economic values can be analysed quickly, such as the (re)integration of different groups into the job market or crime prevention (Kehl, Then & Münscher, 2012). After introducing the impact assessment approach that informs the chapter-at-hand, outcome of livelihood promotion as found in literature and the underlying research project will be shared. Outcome of Livelihood Promotion When writing about livelihood promotion’s outcome and impact, one must note the methodological challenges and dearth of data. Nonetheless, livelihood promotion reportedly can have a positive outcome for people with disabilities, their families, and communities (WHO, 2011). However, academic literature on microfinance with a specific focus on beneficiaries with disabilities is limited, e.g., to aspects such as target group size or exclusion mechanisms as described above (Martinelli & Mersland, 2010). The suggested empowering effect of microfinance on disabled women, for instance, has not been evaluated (Chaudhry, 2016). The WHO (2011) simply records a dearth of evidence about the effectiveness of microfinance programmes targeting people with disabilities. This dearth of evidence calls for a cautious implementation. The study that informed the contribution at hand (Kuhnke et al., 2016a) aimed to evaluate how to assess the social impact of livelihood promotion drawing on the SROI approach

780  Research handbook on disability policy applying Schalock’s (2010) Quality of Life (QoL) domains as the units of analysis. Thirty participants were purposefully selected via two partner organizations (PLAN International, Kilifi, and APDK, Mombasa) who offered disability-specific or inclusive livelihood promotion programmes. In these programmes, beneficiaries were taught business skills or improved farming techniques like drip irrigation and were given small loans to invest in income-generating activities. The study participants (female 18, male 12) were between 20 and 54 years old (mean age: 35 years) and resided in urban (n=8) and rural (n=22) areas. Participants had joined the respective programmes on average 6.1 years previously. Fifteen participants had no disability, yet were economically disadvantaged, 12 were physically impaired, two were relatives of a child with disabilities, and one participant had epilepsy. Small-scale tracer studies were conducted (Kuhnke, Lusweti, Shauri & Wacker, 2016b) based on the eight QoL domains as proposed by Schalock (2010), namely: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional well-being, physical well-being, and material well-being. Contrary to our previous expectations, respondents reported impact in all QoL domains. Of course, certain domains were frequently emphasized with positive impact, namely material well-being and social inclusion. The mixed-method data collected by the project team connected many positive changes with improved material well-being, such as the ability to cater to needs as diverse as housing, nutrition, education, and health care. Or, as one respondent put it: ‘With money, you can get anything, and my life has improved.’ An increased income can thus serve as an enabling factor affecting different QoL domains. Improved nutrition, access to health care, less demanding labour, and relaxation are all connected to the material situation of beneficiaries, which, in turn, influences their physical well-being (Kuhnke et al., 2016b). Furthermore, a decreased dependency and the ability to provide for others were described by study participants as positively influencing their interpersonal relations. More specifically, respondents emphasized that their ability to take financial responsibility, e.g., by contributing to funerals, weddings, hospital bills, or school fees, further fostered their social inclusion. Official statistics show that 79.4 per cent of households in the Coast region of Kenya use informal cash transfers (GoK, 2009, 144–150). It can be argued that the opportunity to participate in these informal social security activities is a crucial aspect of participation in Kenyan society. Of course, the possibility of participating is linked to a person’s material well-being. The positive effects of improved social networks were prominently described as another enabling factor. For some beneficiaries, the meetings of the livelihood promotion groups already generated a form of empowerment through frequent interactions, responsibilities taken within the group and increased visibility in the community. When asked to rate impact, 19 of 30 respondents ranked social interaction as the most important, even before economic empowerment. When asked for the most important non-financial impact of the project, beneficiaries mentioned indicators in the domains of personal development, self-determination, interpersonal relations, and social inclusion as well as emotional and material well-being (Kuhnke et al., 2016b). Despite the purposive sampling strategy, some respondents reported negative changes, for instance, the distressing effects of indebtedness. This finding is surprising, given the potential sampling bias, and should be taken into consideration. However, narrative data showed that the adverse changes reported could also be positively perceived. For example, some respondents reported less free time due to more business activity – a rather desirable outcome in this context. Still, this interpretation can also be challenged since decent work should also allow for adequate leisure (ibid.).

Social entrepreneurship between earning a living and emancipation  781 Ethnographic research from India further elaborates on the potential adverse effects of microfinance. As participation in self-help groups is a precondition to access the support of these groups, the financial inclusion achieved is exclusionary. Inaccessible regional group meetings create hierarchies of impairment that promote people with relatively minor disabilities (Chaudhry, 2015). The programme design, thus, reinforces intersectional disadvantage – the author distinguishes three different categories of beneficiaries (Chaudhry, 2018). The first group, ‘capacitated disabled entrepreneurs’ (ibid., n.p.), tend to be relatively privileged, e.g., in terms of another steady source of income and family support. Some programme participants had neither of these but still aspired to entrepreneurship (group 2). However, their small enterprises – often small grocery stores – struggled or even failed. The third group, marginalized people with disabilities, opted out of entrepreneurship, seen as a debt trap to survive in their liminal position. When they primarily relied on a disability pension (equivalent to $8 per month), mandatory weekly savings discouraged their participation since such regular deposits would tie up a large part of this income. Others drew on this pension to save weekly but were subsequently left with meagre sustenance (ibid.). Participation in self-help groups was further described as burdensome because the loss in livelihoods or costs for (accessible) transport when attending compulsory meetings were not recompensated (Chaudhry, 2015). Moreover, since such groups have taken on many tasks previously performed by government employees or NGO staff, they can even be framed as promoting exploitative free labour (Chaudhry, 2019). However, group-based saving and moneylending also ‘brought visibility to disability issues in the village’ (ibid., 1122), challenged stereotypes of people with disabilities as unproductive, and fostered recognition and pride (Chaudhry, 2015) – similar to our findings (see above). Impact of Livelihood Promotion From an economic perspective, it is crucial to look beyond potential life-changing benefits in terms of social participation for individual poor people to evaluate microfinance programmes. Unfortunately, there is little evidence for their impact (Duvendack et al., 2011; Stewart et al., 2012). Academic literature on microfinance for people with disabilities tends to focus on ‘pragmatics’ (Chaudhry, 2016, 178), like improving the accessibility of microfinance programmes. However, particularly since the crisis of microfinance in the Indian state of Andhra Pradesh, the validity of the concept as a poverty alleviation strategy has been questioned. ‘[M]icrofinance has […] received much negative media attention over the last few years which has raised the profile of the debate and increased the pressure to address the question of the effectiveness of microfinance’ (Stewart et al., 2012, 1). It has been debated whether microfinance has a positive or negative impact or whether the available data does not provide any evidence at all (ibid.). One meta-analysis on the validity of the concept found available impact estimates to be unreliable, concluding that ‘almost all impact evaluations of microfinance suffer from weak methodologies and inadequate data’ (Duvendack et al., 2011, 4). A systematic review by Vaessen et al. (2013) included only 25 out of 310 studies. Half of all studies displayed limitations in terms of internal validity and/ or a missing theoretical framework. Studies that were judged to be of good quality effectively ruled out selection bias effects by employing a comparison group. There is (scarce) available evidence on the positive and negative impact of different forms of microfinance for different sub-groups and their respective prerequisites. Microfinance

782  Research handbook on disability policy comprises financial services in the forms of small credits and savings. As established in a systematic review of the evidence for the impact of microfinance, microsavings probably do not have any impact on poor people’s income (Stewart, van Rooyen, Dickson, Majoro & de Wet, 2010) or even on their engagement in economic opportunities. However, they may increase income, savings, expenditures, and assets accumulation (Stewart et al., 2012). Microcredits can have a mixed impact on poor people’s income. They can be harmful since they can lure beneficiaries into debt when an (immediate) increase in income and, thus, the repayment of loans is not achievable (Stewart et al., 2010). ‘Some people are made poorer, and not richer, by microfinance’ (ibid., 5). Hence, the available evidence on microfinance does not back up its utilization as a major poverty alleviation strategy that supposedly fits every potential beneficiary. Other measures such as basic social security should be foregrounded to this end. Microcredits can have a positive impact on beneficiaries’ savings and accumulation of assets, on their housing, health, food security, and nutrition. However, effects on job creation and social cohesion have not been detected. Moreover, the impact on education is mixed and considerably adverse for the education of beneficiaries’ children. As loan instalments must be continuously repaid, long-term investments in the future (like education) are a risky venture, and school fees might, at times, be challenging to raise (ibid.). Several reviews point out the preconditions for microfinance’s positive impact. For instance, microcredits only have positive effects on the engagement in economic opportunities when beneficiaries are highly educated or trained (Stewart et al., 2012). Moreover, it can further be argued that financial services are more likely to attract people who are already economically active (Vaessen et al., 2013). Thus, the goal of microfinance to reach the poorest of the poor is questionable; instead, such programmes should specifically target entrepreneurs (Stewart et al., 2010), regardless of the potential beneficiaries’ disability status. Evidence of a specific effect of microfinance on women could not be found (Stewart et al., 2012). A systematic review by Vaessen et al. (2013) on women’s control over household spending concludes that the results are statistically insignificant – ‘not statistically significantly different from zero’ (ibid., 10) with a high risk of bias. To our knowledge, evidence specifically focusing on people with disabilities is not available. Whether or not evidence for the impact of microfinance programmes on poor people’s lives is available is a scientific question with ethical implications from a human rights perspective. When data based on weak methodologies suggests a positive impact, ‘[t]his can lead to misconceptions about the actual effects of a microfinance programme, thereby diverting attention from the search for perhaps more pro-poor interventions’ (Duvendack et al., 2011, 4). Such alternative interventions might be more emancipatory or sustainable for impoverished people (Chaudhry, 2016). Furthermore, the evidence base for microfinance’s impact is also weak for goals on a larger scale. Initially, microfinance was promoted as a measure to alleviate poverty – not only in individual cases. However, information on the broader economic impact of microcredit is scarce since its success is often only determined via readily available data. ‘[R]epayment rates and other commonly reported measures tell us nothing about the impact of a programme on poverty’ (Beck & Ogden, 2007, 20). Suppose microfinance had a substantial impact on national poverty levels. In that case, such an effect should have been observable, for instance, in Bangladesh, where microcredits are widespread and have a comparably long history; however, ‘microcredit seems to have had little impact on the country’s relative development performance’ (ibid., 20).

Social entrepreneurship between earning a living and emancipation  783 To date, microfinance programmes are primarily supposed to be financially sustainable, meaning that the programmes are expected to finance themselves. The aspiration of financial sustainability has replaced initial microfinance models that international donors or local governments often subsidized. From a human rights perspective, microfinance can, thus, be called out for individualizing and depoliticizing poverty (Chaudhry, 2019), or even for its potentially destructive effect on local economies. The focus on microenterprises and self-employment does not raise the level of national productivity, which is mainly driven by medium-sized companies (Bateman, 2010). Moreover, some markets can be described as ‘“saturated” – that is, every single poor person can very easily access as much microcredit as they wish’ (ibid., 25). Hence, the availability of such investments encourages beneficiaries to offer simple services and unprocessed goods that meet a locally limited demand (ibid.). ‘Pushing more and more surplus workers into the same depressed informal economic space has no real economic development or anti-poverty justification, still less any ethical content’ (ibid., 25). In sum, microfinance is harshly criticized but can offer tangible opportunities to individual beneficiaries. Therefore, elaborating selection procedures to reach entrepreneurs who have or can acquire the necessary skills to run a successful business appears crucial. In addition, other measures should be considered for the other (larger) part of the target group, such as the provision of social security schemes or the investment in companies bigger than micro-businesses.

CONCLUSION People with disabilities have the same rights as everyone else to an adequate living standard and sustainable livelihoods as delineated in the Sustainable Development Goals (UN, 2015). Striving for an inclusive society, the UN CRPD obliges parties to compensate for disability-specific disadvantages in securing a living. The effects of microfinance are debatable. The macro-economic and social impact of livelihood promotion programmes reaches beyond the measures that individual programmes can routinely assess, such as repayment rates. It seems convincing to argue that livelihood promotion programmes rather lead more small-scale entrepreneurs to compete over limited resources. Drawing on the aforementioned exploratory field study in Kenya, livelihood promotion’s main impact should be recognized in the social rather than the (national) economic realm. Earning one’s living also translates to earned respect. When people with disabilities can draw on an increased income, they gain the opportunity to participate in informal social security as practised by the vast majority of the society around them. Taking financial responsibility within one’s social network is, thus, crucial to social inclusion in the Kenyan context. Furthermore, being an entrepreneur is empowering beyond the material realm as it makes people with disabilities visible in the community and generates opportunities for frequent social interactions. Therefore, promoting livelihoods is by no means exhausted in the provision of a sustaining income. Viable programmes need to be designed to combine – and, thus, invest in – the promotion of earning one’s living and empowerment. To this end, they should attend to the needs, wishes, and choices of people with disabilities – tailoring involvement and support in anticipating diversity and in a participatory design. When livelihood promotion strives for social inclusion, embedding people with disabilities in community-based inclusion programmes is

784  Research handbook on disability policy preferable to a more individualistic focus. However, as participation in microfinance groups requires many preconditions like voluntary labour, other measures in the realm of social security should be considered to reach the poorest of the poor. Not everyone aspires to be an entrepreneur. Therefore, livelihood promotion should not be the only option available to people with disabilities when seeking to better their standard of living. Moreover, microfinance programmes should be implemented with caution – whether as a general measure for poverty alleviation or specifically tailored to people with disabilities.

LESSONS AND RECOMMENDATIONS From a human rights perspective, it seems necessary to disentangle which human rights precisely can and cannot be promoted by livelihood promotion. Given the evidence currently available, it seems unlikely that livelihood promotion can secure an adequate living standard (UN CRPD Article 28) for all people with disabilities. Nevertheless, livelihood promotion might foster participation in employment (UN CRPD Article 27), where this mainly amounts to (self-)employment in the informal sector. ‘[S]elf-employment is an important livelihood option for people in low- and middle-income countries – first because people with disabilities generally suffer from discrimination in the labor market, but also because own-account work is much more common in those environments’ (Mont, 2014, 32). Furthermore, the UN CRPD demands equal access to all areas of life. Thus, some authors conclude that the UN CRPD ‘clearly indicated that persons with disabilities have the right to equal opportunities, including equal access to microfinance services’ (Beisland & Mersland, 2014, 190). Given the prevalence of livelihood promotion programmes in the Global South, an assessment from a human rights perspective seems timely. Although livelihood promotion can carry a positive, or even life-changing, outcome for individual beneficiaries, their long-term or even national impact remains unclear. Against the background of this weak evidence base, one can ask whether livelihood promotion rather suits the needs of programme officers and policymakers to do something about poverty and see change and empowerment, albeit in individuals (Chaudhry, 2019). Such an individualizing approach to poverty neglects the systemic causes of poverty in a globalized world. Given the extra costs of disability, the risks of indebtedness feature even larger for people with disabilities. From a human rights perspective, it should be questioned whether livelihood promotion programmes can fulfil their self-ascribed goals like poverty alleviation or their beneficiaries’ empowerment. Due to the potentially negative impact of indebtedness, participants for microfinance interventions should be chosen with caution. More solidary intervention forms, like basic social security, should be considered for people with disabilities and their families who do not aspire to or do not meet the necessary preconditions for successful entrepreneurship, e.g., due to extreme economic marginalization and the extra costs associated with disability. In individualizing poverty, livelihood promotion further tends to reinforce individual, medicalized views on disability (Chaudhry, 2018, n.p.), which are deemed incompatible with a human rights perspective. NGO who believe in the potential of livelihood promotion and seek to provide evidence for their programmes’ social impact are well advised to consider their beneficiaries’ quality of life holistically. Thus, it is not sufficient to only state indicators like repayment rates or changes in income. In a field as complex as livelihood promotion, it is crucial to provide baseline data

Social entrepreneurship between earning a living and emancipation  785 to attribute impact to the specific programme. Therefore, baseline data should be gathered when designing a new programme (Evaluation Gap Working Group, 2006, 27). To this end, questions on expenditures and consumption in different QoL domains have proven suitable in the underlying project to be embedded in general programme monitoring to gather preand post-data for new beneficiaries. Furthermore, the pre- and post-assessment of different sources of livelihood would allow for the analysis of livelihood diversification, which is hard to capture, especially when most systems – markets, job markets, social security – are informal and do not necessarily involve bookkeeping. From experience gathered in the underlying study, quantifying social impact as an investment indicator certainly makes sense – even if this task is complex and most likely calls for mixed-method designs as not all indicators relevant to social inclusion can be quantified. When assessing impact drawing on the SROI approach, variables relevant in the specific field and socio-cultural context need to be carefully chosen based on desk research and discussions with local stakeholders. Deadweight can only be accounted for if adequate comparison data are available. Where baseline data are not available, one can use available official statistics, for instance, on reinvestments in different life areas (Christoph, 2015) such as micro-businesses, health, or the beneficiaries’ social networks. Where official statistics are not available, further lobbying for disability mainstreaming in national and international statistics seems timely. Lastly, the discussion of livelihood promotion for people with disabilities in the Global South raises the question of whether this approach can also inspire interventions in the domain of employment and disability in the Global North. Experience from the German context suggests that maintaining the same approach time and again does not solve the social problem that people with disabilities are disadvantaged in the labour market. Is self-employment an option that people with disabilities can choose to earn their living, supported by making the necessary preconditions such as business skills and start-up capital accessible?

NOTES 1. 2. 3. 4.

Start of endnote. See: https://ncpwd.go.ke. End of endnote. Start of endnote. Global South and Global North do not refer to geographical locations but describe asymmetrical power relations in the given postcolonial moment shaped not only by a colonial history but also by neocolonial continuities (Meekosha, 2011). End of endnote. Start of endnote. Information on the conceptual framework of the underlying study (Kuhnke et al., 2016b) has been previously published. End of endnote. Start of endnote. See: https://grameenbank.org/the-nobel-peace-prize-2006/. End of endnote.

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67. Advancing income security policy using universal design: the case of the Ontario Disability Support Programme in Ontario, Canada Tracy Smith-Carrier

INTRODUCTION Although accessibility legislation has been one of the hallmarks of disability policy in many countries of the Global North (e.g., Hosking, 2013), much work is needed to not only realize the full implementation of such legislation but also advance conceptions of disability policy using a universal design framework. Universal design has historically been associated with architectural models that aim to create environments that can be understood, accessed, and used by the greatest number of people possible regardless of their age, size, or ability (Centre for Excellence in Universal Design, 2020). Income security programmes provide a vital source of income for disabled people. Yet such programmes are typically offered at levels well below low-income thresholds, subjected to strict eligibility criteria, and shrouded in administrative complexity (see Smith-Carrier et al., 2020). To reduce the scope of their eligibility, thereby lessening demands on the public purse, they often exclude many who could benefit from them. The purpose of this chapter is to explore how universal design might be applied to income security programmes that are inclusive of the disabled population. Using the Ontario Disability Support Programme in Ontario, Canada, as a case example, the author will discuss the limitations associated with income assistance programming designed exclusively for disabled people and outline how a transformative shift to a universally accessible basic income would anchor income security provisions to the principles of universal design in policy practice. Involving disabled people in policy discussions about how such programmes should be offered and how to mitigate potential losses of other valuable services (e.g., coverage for health services, assistive devices) attached to income supports for disabled people is crucial.

THEORETICAL FRAMEWORK: CRITICAL DISABILITY STUDIES This chapter employs a Critical Disability Studies (CDS) lens to recognize the strengths and challenges associated with two dominant models of disability (i.e., the medical model vis-à-vis the social model, although there are others, e.g., a human rights model, the cultural model) in orienting income security policy towards inclusion. CDS involves an eclectic, interdisciplinary approach to understanding social relations, using disability as the key category of analysis. It illuminates the dynamics of power in society, allowing us to identify the ways in which some social identities (e.g., non-disabled people) experience privilege, while Others (e.g., disabled people) are recurrently subjected to discrimination, marginalization, and oppression (e.g., 789

790  Research handbook on disability policy through poverty and unemployment; particularly germane in this chapter). CDS theorists also expand our conceptual understandings of disability and impairments and the locus of these permeable distinctions (Meekosha & Shuttleworth, 2009). Briefly, the medical model of disability views disabilities as deficiencies inherent in the individual. This understanding takes as its starting point that disability is an affliction or personal tragedy that must be overcome, fixed, or cured (Vanhala, 2010). Given this orientation, the medical model was central in advancing a charitable model of social support that positioned disabled people as objects of pity, cast outside of mainstream society (Kanter, 2014). In juxtaposition, the social model sees disability as a construct of the environment, specifically due to the erection of barriers limiting the full inclusion and participation of disabled persons in society (Oliver, 2013). In eschewing a binary rendering of these models, scholars recognize the oppressive systems and social relations that continuously disable people and the limitations of the biological body that engender physical and mental impairments (Corker, 1999). As such, Shakespeare (2006) cautions against a narrow focus that sees only the environmental factors (e.g., the lack of accommodations in the workplace, inaccessible buildings) that construct disability, and in so doing obscures or negates disabled persons’ experiences of their impairments. Moreover, Oliver (2013) draws attention to the criticism levelled at the social model as a framework that does not readily account for difference, casting disabled people as a singular, unified group. As Smith-Carrier et al. (2017) note, there indeed lies the rub: how do we adequately account for the multi-dimensionality, diversity, and fluidity of disabled people but also respond to their common experiences of oppression (i.e., poverty, social exclusion, unemployment, and discrimination)? How do we design social welfare systems on universal principles that will also respond to all human beings’ varying needs and differing limitations?

UNIVERSALIST–PARTICULARIST DIVIDE In modern history, universalist logic had its origins in the work of sociologist T. H. Marshall’s conception of social citizenship. To Marshall, individuals belonging to a community (typically, at the national level) were entitled to a range of social goods guaranteed by the state owing to their status as citizens. Richard Titmuss also took up the call for social citizenship and advanced it further, calling for the substitution of competitive capitalist relations to a society built on egalitarian fellowship and reciprocity. Marshall and Titmuss alike viewed social equality as a necessary and realistic vision, with the primary of the state central to its realization (Ellison, 1999). After the launch of the Beveridge report in the UK, Leonard Marsh, in a report released in 1943, advanced a blueprint for Canadian social welfare built on universal principles requiring that the needs of the entire citizenry were met. The views taken up in the post-war period report led to the introduction of many income security programmes and social services, an institutional era in Canadian social welfare history that would all too soon fall by the wayside (Graham et al., 2017). In the 1980s, neoliberalist thought took hold, leading to recurrent processes of free-market liberalism, privatization, deregulation, and welfare state retrenchment. In this context, disadvantaged groups became even more marginalized. Rather than re-invoking universalist aims, scholars became sceptical of them, preferring a politics of pluralism and difference (Ellison, 1999). Inherent differences in power, as argued by Benhabib (1996), were thought to be obscured in broad, all-inclusive notions of citizenship; impulses that had the propensity to

Advancing income security policy using universal design  791 privilege the dominant group (Ellison, 1999). Here, universalism, or perhaps more fittingly, false universalism (Williams, 1992), was revealed as a homogenous ascription benefitting the interests of a particular group: white, able-bodied, heterosexual men. The ethos of equality, the idea that all must be treated uniformly, without preference or special consideration, was thought to fuel existing inequalities. Shedding the universalist nostrums of the modern era, including the supposition that universally valid solutions could be devised for universally experienced social problems (Thompson & Hoggett, 1996), postmodernity embraced an attitude of “incredulity toward metanarratives” (Lyotard, 1984, p. xxiv), and a recognition that universal structures can readily be dismantled in the presence of irreducible diversity. In Canada, many of the income security programmes launched during the post-war period have remained relatively stable (e.g., pension programmes, employment insurance; Béland et al., 2019). However, the social assistance programmes in Ontario, a provincial and territorial responsibility (as Canada is comprised of 10 provinces and three territories) as of the 1990s, witnessed a shift away from the principles of welfare based on the need for targeted welfare-for-work programming. The vestiges of the medical model, rendering disabled people as members of the undeserving poor, shaped the construction of a social assistance system featuring two streams: one for presumably ‘able-bodied’ unemployed individuals and one for disabled persons (to be discussed in greater detail forthwith). Numerous countries in the Global North likewise fashioned targeted disability income support systems, often premised on active citizenship and employment-based activation aims (see Soldatic & Pini, 2009). Although disability income systems in many liberal welfare states have tended to be selective, stigmatized, and demeaning for disabled people, some gains have been made in other policy domains (e.g., post-secondary education, accessible legislation; Smith-Carrier et al., 2017). In 2006, the United Nations (UN) passed the Convention on the Rights of Persons with Disabilities (CRPD), watershed legislation that, while inherently selective by design (i.e., applicable to the disabled population), lays the framework for the universality of human rights (Bickenbach, 2009). In the late 1980s, Irving Zola, a disability rights advocate and sociologist, affirmed a universalized disability policy that, rather than targeting the needs and circumstances of disabled people, advanced policy implementing disability rights: policy for all citizens built on human rights (Zola, 1989). Not all would agree with this conception, as the postmodern turn during this era had attracted significant speculation that universal policies had the potentiality to erase, negate, or devalue the specific needs of individuals, including members of the disabled population. This tension gave rise to the universalism–particularism debate, a paradox known as the ‘dilemma of difference’. This dilemma begs the question: should the achievement of political equality be predicated on the similarities or sameness of human beings, or should individual differences be accentuated, allowing for their unique needs and requirements to be adequately considered? To provide clarity in the use of our terms, universalism seeks to apply the same standard to all individuals (e.g., flat-rate income security benefits to all members of a population), while particularist approaches recognize that different standards may be appropriate in different situations for different individuals and groups. Relatedly, selectivism favours the targeting of benefits and services to certain groups (restricted membership), either based on individual financial means (positive selectivism) or without reference to means (negative selectivism) (Thompson & Hoggett, 1996, pp. 22–23). Universalism has on many occasions been conceptually linked to the institutional approach, the social-democratic welfare state, and the Nordic

792  Research handbook on disability policy model. According to Anttonen and Sipilä (2014), universalism includes two main criteria: the inclusion of all citizens, such that no one is excluded; and universal allocation, meaning that the benefit is distributed evenly, accessible to all, and used by the majority of citizens (i.e., high uptake rates). Anderson (2012) supplies further dimensions: (a) entitlements and eligibility are clearly defined rights, not a matter of discretion; (b) rules apply to all citizens or residents who are relevant beneficiaries; (c) benefits are financed through public taxation, seldom through contributions; (d) benefits are almost the same for all citizens, such that no one is excluded through means-testing; and (e) benefits are adequate (p. 6). Thompson and Hoggett (1996) suggest that the universalist–particularist debate is perhaps misguided given that [a]ny justifiable universalism or egalitarianism must take particularity and difference into account: and any legitimate particularism or politics of difference must employ some universal or egalitarian standard. (p. 23)

Imrie (2004), likewise, argues that difference lies at the heart of universalism, as universal social policy must be supported by socio-institutional frameworks that enable groups to co-exist. Indeed, ‘universal’ programmes have never truly been universal in scope; there have always been those excluded, often based on citizenship or residency status (Smith-Carrier, 2019). Jacques and Noël (2021) thus suggest we envisage a continuum, with universalism on one end and residualism (premised on the notion that social welfare programming, including income assistance, be provided as a last resort, only when the family and markets fail), not particularism or selectivity, on the other. Targeting within universalism (hybrid configurations or progressive universalism) has utility when the balance of programmes and services demonstrates both the intentions and outcomes of universalism, when fewer of these reflect targeted, stigmatizing designs, and when social protections are not residual in orientation (Jacques & Noël, 2021). Scholars are now less inclined to talk about universalism as an either/or policy arrangement, but one better appraised in light of its proximity to an ideal type (Anderson, 2012) or gradations of less or more, recognizing the nuances and multi-dimensionality of this polysemic concept (e.g., ‘varieties of universalism’; Anttonen & Sipilä, 2014). In particular, the question of adequacy or generosity cannot be ignored. A flat-rate universalism that does little to improve the prospects of those in the lowest income rung, or which necessitates the purchase of supplementary private insurance or use of savings given the dearth of its provision, surely cannot be a robust conception of universalism (Anderson, 2012). Bickenbach (2014) argues that negotiating the implementation of universal policy projects can be messy (probably more so at the level of theoretical abstraction), although it could involve a transition period or series of incremental steps. Indeed, a phased approach towards the progressive realization of human rights (as reflected in Article 4.2 of the CRPD) would likely be more palatable and pragmatic from a political and resource perspective, and such a progression would allow for the participatory inclusion of voices needed for a universally accessible universal design platform. Participation indeed is vital, as it would permit the deliberation and negotiation necessary to ensure that policies are sufficiently flexible and sensitive to meet the needs of a broad range of programme and/or service users (Bickenbach, 2014).

Advancing income security policy using universal design  793

UNIVERSAL DESIGN Universal design has its origins in architecture, largely through the work of architects such as Michael Bednar and Ronald Mace. The central idea defining universal design is to design “all products, building and exterior spaces to be usable by all people to the greatest extent possible” (Mace et al., 1991, p. 1). Eschewing notions of ‘special needs’ or designs built to accommodate specific populations, universal design is intended to consider the full diversity and variation of human life. There is little room for designs featuring stigmatizing medical or technical appearances (those not designed to be easily understood or widely accessed); designs must be easy to use, flexible, and adaptable for everyone. As such, the principles underlying universal design include: (a) equitable use – designs must be useful and marketable for all people; (b) flexibility in use – designs must accommodate a range of individual preferences and abilities; (c) simple and intuitive use – designs are easy to understand, irrespective of the user’s knowledge, language skills, or immediate concentration levels; (d) perceptible information – designs communicate necessary information effectively to the user, regardless of ambient conditions or the user’s sensory abilities; tolerance for error – designs minimize hazards and the adverse consequences of unintended or accidental actions; low physical effort – designs can be used comfortably, efficiently, and with little fatigue; and (e) size and space for approach and use – appropriate space and size are allocated for the reach, manipulation, and use of the design, irrespective of the user’s mobility, body size, or posture (Story et al., 1998). Although universal design has commonly been considered concerning accessibility in the physical environment (Centre for Excellence in Universal Design, 2020) and in educational (CAST, n.d.) and workplace settings (Mueller, 1998), its value extends to other domains, including social welfare provisions (Bickenbach, 2014). Taking up the call for ‘universalized disability policy’ put forth by Irving Zola (1989), Bickenbach and Cieza (2011) offer two examples of universalized policy as proof of concept for such an approach: the Canadian universal health care system (see also Marchildon, 2019), and given that there remains no fully universalistic welfare system (although the Scandinavian countries have likely achieved the closest proximity), the welfare programming approach advised by Richard Titmuss, whereby welfare services are made available to the entire population in such a way as to preserve the dignity and self-respect of the service user. Both these examples show how policy can be proffered equitably, universally, and as a right of citizenship (Bickenbach & Cieza, 2011). Table 67.1 describes how universal design principles can be embedded into a policy framework. These principles largely remain the same as those identified in universal design architectural design: equitable use; flexibility; simple and intuitive use; and tolerance of error. Expanded further, policies should be designed such that their objectives are successful to as many people as possible, easily adaptable to differences in individual needs and circumstances (i.e., broad eligibility criteria and flexible application to differing needs and situations), democratically negotiated (i.e., a bottom-up approach to policy design and implementation), and devised to respond to wide variation (i.e., responsive to diversity) (Bickenbach, 2014). Research on universal policies suggests that they, in contrast to selective policies, tend to be less subject to termination or cuts over time, less stigmatizing to their recipients, and have greater popularity and buy-in from the public, as more people benefit from them. Universal welfare states also reflect greater levels of interpersonal trust, as universal policies can stifle support for radical right political parties, defuse animosity among groups, and promote greater social integration and cohesion (Smith-Carrier, 2019).

794  Research handbook on disability policy Table 67.1

Policy and universal design principles

Universal design principle Equitable use

Policy analogue

Policy principle

Policy scope

Flexibility in use

Policy adaptability

Policy should be designed so that objectives are successful for as many as possible Policy should be easily adaptable to differences in need, applicant, circumstance Policy should have clearly understood objectives and outcomes, democratically negotiated Policy should be designed to identify and respond to anomalous results

Simple and intuitive Policy transparency use Tolerance for error Policy sensitivity Source: Bickenbach (2014).

INCOME ASSISTANCE PROGRAMMING FOR DISABLED ONTARIANS Canada’s income security system resembles a patchwork of social insurance (e.g., Employment Insurance), social assistance (e.g., provincial/territorial programmes like Ontario Works), and tax benefit programmes (e.g., the Canada Child Benefit or Child Disability Benefit). For the disabled population, the Canada Pension Plan-Disability (CPP-D) programme operates at the federal level as a social insurance plan for disabled persons who have contributed to the programme through their earnings in paid employment. In addition to having accrued substantial earnings contributions, participants (under age 65) must “have a mental or physical disability that regularly stops [them] from doing any type of substantially gainful work, and … have a disability that is long-term and of indefinite duration, or is likely to result in death” (Canada, n.d.). Given these rigid criteria, many disabled persons are rendered ineligible for CPP-D and must apply to the (less generous) programme administered through the province, the Ontario Disability Support Programme (ODSP). The ODSP was launched in 1998 in Ontario, Canada’s most populous province. Bifurcated into two programmes, Ontario’s social assistance system, at that time, reflected a workfare stream for those deemed ‘able-bodied’, dubbed Ontario Works (OW), and a stream for disabled people, the ODSP. Harkening to the classifications of deservingness (i.e., ‘able-bodied’ people vis-à-vis the disabled) drawn centuries ago in the era of the British Poor Laws, ODSP participants have always received higher income benefits than their OW counterparts. According to the Ontario government (n.d.), to be eligible for ODSP, you must: Have a substantial mental or physical impairment that is continuous or recurrent, and is expected to last one year or more; your impairment directly results in a substantial restriction in your ability to work, care for yourself, or take part in community life; and your impairment, its duration and restrictions have been verified by an approved health care professional.

As per this definition, only impairments that are “continuous”, “recurrent”, and “expected to last one year or more” are captured. Impairments that may be temporary, intermittent, or episodic in nature (e.g., fibromyalgia, chronic pain, depression) can often be excluded. Here, the fluidity and mutability of impairment are not recognized (Vick, 2012), leaving many ‘not disabled enough’ to receive assistance (Lightman et al., 2009).

Advancing income security policy using universal design  795 Research on social assistance in Ontario reveals similar criticisms of the ODSP as those directed at its workfare counterpart, OW. Both OW and ODSP offer inadequate income benefits (OW: Lightman et al., 2008; ODSP: Chouinard & Crooks, 2005); reflect significant administrative complexity and bureaucratic discretion (OW: Collins, 2016; ODSP: Smith-Carrier et al., 2020) that recurrently subject participants to onerous rules and surveillance mechanisms (OW: Chunn & Gavigan, 2004; ODSP: Smith-Carrier et al., 2017); and do little to promote the well-being and dignity of participants (OW: Collins, 2004; ODSP: Smith-Carrier et al., 2020). The ODSP is also rife with disincentives, such as perverse income exemptions (i.e., on ODSP, after the first $300 earned in a month, all additional income is subject to a 75 per cent government claw-back) such that work does not pay (see Lightman et al., 2009). The ODSP requires an ‘expert’ health care practitioner to diagnose and verify recipients’ ‘disabilities’ as a key criterion of eligibility. Although some disabled people may identify with their diagnosis as part of their embodied sense of self, others may not. Indeed, being marked as disabled – in a society that has marked impairment and disability as distinctly negative – can be risky. Can policies, which continuously rank people according to their perceived deservingness, be re-designed such that these “emotionally charged and complex process(es)” (Crooks et al., 2008, p. 1837) are averted? Although there is a sizable corpus of literature on OW, research on ODSP is relatively thin. What is available describes the manifold shortcomings of the programme, including its “increasingly harsh, punitive” nature (Chouinard & Crooks, 2005, p. 19); the coercive “hostage negotiations” that unfold in programme staff and recipient interactions (Lahey et al., 2020); and the penchant for the “biomedical construction of impairment (presumed individual deficiency) … blended with harmful constructions suggesting the disabled lack the ability to participate in ‘normal’ life” (Smith-Carrier et al., 2017, p. 1579). Unlike OW participants, disabled people on ODSP are encouraged although not mandated to engage in paid work. Research on the efficacy of the employment supports proffered through ODSP, however, are equivocal. Smith-Carrier et al. (2020) document the multifarious ways that the ODSP strays from its stated objectives and a human rights-oriented policy approach.

ADVANCING SUBSTANTIVE HUMAN RIGHTS IN POLICY PRACTICE Although Ontario, and Canada as a whole, has made some progress on extending human rights for disabled people, only until more recently have these permeated outside the negative rights domain (i.e., rights requiring protection, but no action on behalf of the state, e.g., the freedom of expression; Smith-Carrier et al., 2017). Indeed, disability has been recognized as one of the grounds protected against discrimination since 1985 (Vanhala, 2010). There has been significant movement on accessibility legislation (e.g., the Accessibility for Ontarians with Disabilities Act [AODA; Ontario, 2005] and the Accessible Canada Act [Canada, 2019]) that would ensure the removal of barriers and the implementation of robust standards for the design of public spaces, transportation, information and communication, employment, and customer service (e.g., mandatory training for service providers; policies demonstrating how a business or organization is making their service more accessible). Notwithstanding the expectations imposed by these pieces of legislation, the ODSP continues to deny its participants the assurances of privacy, dignity, and self-determination afforded disabled people in other policy domains (Smith-Carrier et al., 2017).

796  Research handbook on disability policy Moving beyond the negative rights domain and the removal of barriers demanded by accessibility legislation such as the AODA, Ontario has been slow to recognize substantive equality claims of positive rights (i.e., rights requiring state action to ensure their provision, e.g., the right to food or housing). Owing to Canadian jurisprudence that has not held governments accountable for such rights obligations, the courts have consistently argued that positive rights constitute policy matters under the purview of elected officials, which therefore lie outside the remit of judiciaries (Jackman, 2019). The juridical enforcement of disability-related supports has not, according to Gary et al. (2010), been assured given (a) the prevailing fixation on formal (rather than substantive) equality; (b) the reticence to impose positive obligations on governments; (c) the perpetuation of a ‘scarce resources’ discourse; (d) the difficulties associated with ameliorative programmes (i.e., those intended to ameliorate the circumstances of a specific group are not required to demonstrate that they are adequate or include all members of the group); and (e) the limits to the remedies ordered (pp. 46–47). ODSP is recognized as an ‘ameliorative programme’, a designation that allows it, by definition, to be under-inclusive, protected from claims of discrimination, and subject to cancellation at any time (Gary et al., 2010). Not only is the government permitted to restrict eligibility in ways that deny individuals resources by the nature and extent of their impairments, but various aspects of the programme are also narrowly drawn, e.g., the Special Diet Allowance that provides additional funds for participants’ dietary needs under the ODSP recognizes only 38 conditions. Given these limitations, it is not astonishing that the ODSP appears impervious to juridical intervention, exposing it to significant erosion over time (Smith-Carrier et al., 2020). A different approach would be to ground income assistance programming into existing poverty reduction strategies (PRSs) enacted by the federal and provincial, and/or territorial governments. PRSs in the province of Ontario, however, have not been particularly effective at reducing poverty (Smith-Carrier & Lawlor, 2017); a trend observed in most provinces and territories across Canada (Plante, 2019) and in countries elsewhere (Levinsohn, 2003). Such approaches have lacked efficacy given that they have not been anchored to the monitoring and accountability infrastructure of a human rights framework. Without firm targets tied to fixed timelines, governments may use PRSs as mere ‘window dressing’ (Plante, 2019) or as a means of ‘policy recycling’ to claim credit for any possible successes (Lawlor et al., 2018). Grounding human rights into both Canada’s PRS, and the province of Ontario’s PRS specifically would likely shift policy action outside the veneer of poverty reduction into the realm of evidence-informed possibility. Throughout the COVID-19 pandemic, the Canadian federal government implemented a series of emergency tax benefits to mitigate the adverse impacts of the health crisis on individuals and families owing to mass layoffs and business closures. The Canadian Emergency Response Benefit (CERB), and later, the Canada Recovery Benefit (alongside the Canada Recovery Sickness Benefit and Canada Recovery Caregiving Benefit) were implemented in relatively short order, offering benefits of $2,000 CAD a month (roughly half, incidentally, of what a person on ODSP can expect to receive) to shore up individuals and families before they faced insolvency. These benefits have been instrumental in providing the Canadian public with a vital social safety net during the COVID-19 health emergency (Bezanson et al., 2020). The swift implementation of emergency benefits in Canada provides evidence that administering income supplementation through the tax system can be achieved effectively. However, programmes rife with conditionality and benefit eligibility criteria make their administration less efficient. This is now being discovered in the federal government’s bid to recoup funds for

Advancing income security policy using universal design  797 the CERB through personal income taxes; efforts that are, unsurprisingly, having deleterious impacts on those living on a low income (Macdonald, 2021). These issues notwithstanding, not only have tax benefits been shown to be beneficial in times of crisis but their utility can also be realized in times of relative stability as well (Forget, 2020).

BASIC INCOME SCHEMES A universally accessible basic income has garnered fanfare as of late, as a policy option demonstrated to show promise in improving recipients’ employment (Calnitsky & Latner, 2017); housing (Hamilton & Mulvale, 2019); food security (Tarasuk, 2017); and physical health and mental well-being (Forget, 2020). Canada already has experience with forms of basic income in its existing suite of income security programmes. The various pension programmes available to older adults (aged 65+) in Canada have demonstrated significant success in assuaging the experience of low income among this population. The Canada Child Benefit, a means-tested tax benefit to families with children, has also proven itself a viable instrument for poverty alleviation (Smith-Carrier & Green, 2017). Although some contend that a universal basic income (UBI) can only be defined as such when it is truly universal, offered as a flat-rate or demogrant model, i.e., everyone receives the same amount at the same frequency (Standing, 2017), others suggest that a minimum guaranteed income or negative income tax could be deemed to be a variant of basic income when it is anchored to the principle of universality of access, i.e., only those who require benefits are afforded them (Ontario Basic Income Network, n.d.). Similar to Canada’s universal health care system (albeit missing universal prescription drug coverage), services available to all members of a given population are provided only when individuals require them. UBI is described in the literature as a scheme that increases the exercise of citizenship rights and personal freedoms, while simultaneously fulfilling moral and ethical policy ideals. The idea, however, is not without its risks. This may be particularly true for disabled people who can often face disadvantages in finding paid work and may encounter additional costs and/or barriers owing to their impairments (Duffy & Elder-Woodward, 2019) that make the receipt of a less generous flat-rate benefit far less adequate or equitable (Smith-Carrier et al., 2017). To mitigate this disadvantage, Duffy and Elder-Woodward (2019) call for UBI+: a UBI offered to the general population that is augmented with income supplements, offered unconditionally, with no means-testing, behavioural, or spending conditions, for disabled persons (although, given that they are intended for the disabled population, the verification of a diagnosis would likely still be required). In this way, a universal system is established that provides funding that can be used for individualized care supports and personal budgets; a key objective of the Disabled People’s Independent Living Movement (Duffy & Elder-Woodward, 2019). However, this stream of income supplementation (offered in addition to a flat-rate amount to all citizens/residents) could be subject to the same kinds of rigid eligibility criteria workfare/ welfare systems have all too readily been known for. That said, given that the additional costs of disability can be considerable (Mont & Cote, 2020), discussion on supplementary supports to mitigate these may be necessary. The presumed profligate cost of offering an adequate UBI – one that offers sufficient funds for people to have their basic needs met, irrespective of their labour force attachment – remains a key barrier to its implementation (see Karimi, 2021). Thus, it is likely that Canada

798  Research handbook on disability policy (which now has several political actors, across party lines, in favour of a basic income), like nations elsewhere, may need to take a phased approach to its progressive realization. To start, a UBI could take the form of an income support system featuring the principle of universality of access (available to all who need it), not equality of benefit allocation (not the same, flat-rate payment for all who receive it). Although there may be a reticence to adopt another means-tested model to replace existing social assistance programmes like the ODSP, administering benefits through the tax system would eliminate the shame and stigma associated with its receipt that can beleaguer demeaning means-tested programmes. No conditionalities related to behavioural or spending constraints would be imposed. In this way, an equitable approach is taken, ensuring that those with the least amount of income (including those whose participation in the labour market may be constrained, for whatever reason) are offered a liveable income, allowing individuals to live securely and with dignity. It is well documented that disabled people can incur additional expenses owing to their impairments, including requiring assistive devices, medical equipment, accessible transportation, and/or housing (Mitra et al., 2017). The Ontario social welfare system already offers supports to meet these needs through various policy arrangements: specialized transit offered at the municipal level, the Assistive Devices Programme at the provincial level, and accessible housing through various provisions (e.g., charities, provincial renovation programmes). Many basic income advocates in Canada have consistently called for a basic income that would supplement existing supports, not replace them – with the exception of eliminating social assistance programmes. A universally accessible basic income could be offered that would be adequate to meet people’s basic needs for food and shelter, in addition to bolstering or transforming extant programmes, so that they better address individuals’ needs (e.g., transit and housing fashioned using universal design principles), services (e.g., mental health supports inserted into the universal health care system), and equipment (e.g., wheelchairs and assistive devices through the Assistive Devices Programme (Forget & Regehr, 2020). Moving forward, the inclusion of disabled people in the design and implementation of universal policy architecture will be vital. The UN CRPD, which embodies and enshrines the key tenets of disability scholarship and activism to date, encapsulates the ‘nothing about us without us’ approach that undergirds this landmark human rights achievement (Series, 2020). At the core of the UN CRPD are the tenets of universalism, equality, and dignity, which are rooted in, and reflective of, the assurance of an adequate standard of living and social protection (as per Article 28). The latter, according to Turner (2006), involves a commitment by states to proactively ensure rights, based not on duties and contributions, but on entitlements that recognize and respond to “human vulnerability that we all share – not as workers, but as human beings” (p. 109). Yet, the idea of vulnerability has not always sat well with disabled advocates wary of the paternalism that has traditionally characterized state and societal relations with disabled people. As such, the general principles of the CRPD outlined in Article 3: “respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices and independence of persons” (United Nations, n.d.), eschews terms such as protection and vulnerability. A departure from the minimal or tempered involvement of disabled people in formulating previous human rights instruments, the CRPD represents a critical turn in inclusive lawmaking for disabled people. Its development “irrevocably shifted the benchmarks of legitimacy for the development of laws affecting disabled people” (Series, 2020, p. 80). The CRPD thus represented a paradigmatic shift, not only moving away from the medical understanding of disability and the promotion of regressive welfare policies and charity to support

Advancing income security policy using universal design  799 disabled people, but including disabled people’s voices in all aspects of policy construction (Series, 2020). Adopting a human rights approach, states must “take effective or all necessary measures to ensure their enjoyment on an equal basis with others” (Waddington, 2011, p. 436). This guarantee, and its enforcement, requires nation states to not only promote and protect (negative) rights but also ensure (positive) rights in ways that progressively realize their full and equal enjoyment. Like all other countries, Canada has ample room to grow in better responding to individuals’ access to social and economic rights. The universal design approach allows for policies to be crafted that are adaptable and sensitive to difference yet universal in scope, and thus congruent with the CRPD, offering benefits that the maximum number of people can readily access.

APPRAISAL OF ODSP WITH UNIVERSAL DESIGN PRINCIPLES Another case of policy made by stealth, the ODSP is now subject to several transformations that are likely to give many disability scholars and advocates pause. The Ontario government has recently outsourced its OW and ODSP employment services, once administered in partnership with municipalities, to foreign-owned for-profit firms equipped with targets to ensure greater compliance with employment objectives (Tanweer, 2021). These new targets could put pressure on ODSP participants to rapidly find and retain employment; work that may not always be a suitable fit for disabled people or which potentially could make them worse off (particularly in the absence of the supplemental health and dietary benefits attached to the ODSP). Yet, the government remains silent about any efforts to tackle workplace discrimination or address the need for job modifications or accommodations. Given that the sole focus of the newest rendition of the PRS in Ontario, now in its third iteration (Ontario, 2020), is reducing social assistance caseloads, renewed emphasis will invariably be fixated on making ODSP less accessible and more difficult for disabled people to circumnavigate. Prior to the PRS’s release, Ontario’s premier, Doug Ford, garnered some media attention for his attack on the programme, after reviewing findings by the Ontario Auditor General, Bonnie Lysyk, who had cited concerns about rising ODSP costs (Office of the Auditor General of Ontario, 2019), prompting Ford to restrict participants’ right of appeal in Social Benefit Tribunal cases (Regg Cohn, 2020), and to hire a team of fraud investigators to cut caseloads, during the COVID-19 pandemic when unemployment was at an all-time high. The 17 “programme integrity analysts” were budgeted at the cost of $1.5 million (Pfeffer, 2020) and hired through contracts with private companies outside Canada (Thomas, 2020). Clearly, Doug Ford had turned to advice from his trusted friend, former premier Mike Harris, who first introduced workfare in Ontario in the 1990s, and at that time, slashed social assistance rates by 21.6 per cent. Harris was recently nominated by Ford for candidacy to the acclaimed Order of Ontario, much to the chagrin of his detractors (Cartwright, 2021). Earlier criticisms of the ODSP, and the recent developments described heretofore, offer little evidence that the programme readily conforms to universal design principles, or to the rights and social protections affirmed in the CRPD. It is a system built on denial and exclusion (Fraser et al., 2003), not inclusion (e.g., disabled people with temporary, sporadic, or intermittent impairments are entirely negated); one that perpetuates the medical model perspective, in which disabled people are positioned as objects of pity, charity, and rehabilitation. Given

800  Research handbook on disability policy significant bureaucratic discretion, the programme is inequitable in its resource distribution and rigid in its eligibility criteria. The lack of transparency and manifold rules attached to the programme (Chouinard & Crooks, 2005) defy its simple and intuitive use. It remains stigmatizing, punitive, and wholly inadequate (Smith-Carrier et al., 2020). These regressive characteristics, and the ongoing retrenchment of the programme, make it less effective, less just, and less humane.

CONCLUSION Adopting a basic income (or variant guaranteed minimum income programme) could, if offered adequately, introduce rights-based universal design policy infrastructure in Canada, offering income benefits equitably and universally to all (i.e., based on residency, not on dis/ability status). Such a programme could be fitted within a robust PRS that ties poverty reduction to enforced timelines and targets, or enshrined explicitly in law, such that its goals are progressively realized and not readily assailable by future governments seeking to erode or dismantle them. Having disabled people and people with lived experience of poverty as co-creators of the programme will ensure that it is built on universal design principles. Built to be adequate, transparent, and equitable for as many people as possible (i.e., far from residual and closer in proximity to universality), the programme would act in tandem with existing programmes and services to ensure that supports are available and accessible to meet the full range of needs and requirements that characterize human diversity.

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802  Research handbook on disability policy Karimi, S. (2021, February 14). Instead of a universal basic income, governments should enrich existing social programmes. The Conversation. https://theconversation.com/instead-of-a-universal-basic ​ ​ ​ ​ ​ ​ ​ ​ -income-governments-should-enrich-existing-social-programmes-154354 ​ ​ ​ ​ ​ ​ ​ Lahey, P., Kirsh, B., Tompa, E., MacDermid, J., & Gewurtz, R. E. (2020). The Ontario Disability Support Programme work exit process: Parallels to a hostage negotiation. Journal of Disability Policy Studies, 1–11. https://doi.org/10.1177/1044207320944609 ​ ​ ​ ​ ​ Lawlor, A., Smith-Carrier, T., & Benbow, S. (2019). Reducing delivery by programme recycling: An analysis of the Poverty Reduction Strategy in Ontario, Canada. Canadian Review of Social Policy/ Revue canadienne de politique sociale, 78, n.p. Levinsohn, J. (2003). The World Bank’s poverty reduction strategy paper approach: Good marketing or good policy? G-24 Discussion Paper, No. 21. United Nations. Lightman, E., Herd, D., & Mitchell, A. (2008). Precarious lives: Work, health and hunger among current and former welfare recipients in Toronto. Journal of Policy Practice, 7(4), 242–259. https://doi.org/ ​ ​ ​ 10.1080/15588740802258508 ​ ​ Lightman, E., Vick, A., Herd, D., & Mitchell, A. (2009). ‘Not disabled enough’: Episodic disabilities and the Ontario Disability Support Programme. Disability Studies Quarterly, 29(3), n.p. Lyotard, J-F. (1984). The postmodern condition: A report on knowledge (Theory and History of Literature, Vol. 10). University of Minnesota Press. Macdonald, D. (2021). What CERB recipients can expect at tax time. The Monitor: Canadian Centre for Policy Alternatives. https://monitormag.ca/articles/what-cerb-recipients-can-expect-at-tax-time ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Mace, R. L., Hardie, G. J., & Place, J. P. (1991). Accessible environments: Toward universal design. In W. E. Preiser, J. C. Vischer, & E. T. White (Eds.), Design intervention: Toward a more humane architecture (pp. 155–180). Van Nostrand Reinhold. Marchildon, G. (2019). The single-tier universality of Canadian medicare. In D. Béland, G. Marchildon, & M. J. Prince (Eds.), Universality and social policy in Canada (pp. 49–62). University of Toronto Press. Meekosha, H., & Shuttleworth, R. (2009). What’s so ‘critical’ about critical disability studies? Australian Journal of Human Rights, 15(1), 47–75. https://doi.org/10.1080/1323238X.2009.11910861 ​ ​ ​ ​ ​ ​ ​ Mitra, S., Mont, D., Kim, H., Palmer, M., & Groce, N. (2017, July 25). The hidden extra costs of living with a disability. The Conversation. https://theconversation.com/the-hidden-extra-costs-of-living ​ ​ ​ ​ ​ ​ ​ ​ ​ -with-a-disability-78001 ​ ​ ​ Mont, D., & Cote, A. (2020, June). Considering the disability-related extra costs in social protection. A collaboration of UN Partnerships on the Rights of Persons with Disabilities. Innovation to Inclusion, Leonard Cheshire, and UK Aid. Background Paper #2. https://www.social-protection.org/ gimi/RessourcePDF.action?id=56925 ​ ​ ​ ​ ​ Mueller, J. L. (1998). Assistive technology and universal design in the workplace. Assistive Technology, 10(1), 37–43. https://doi.org/10.1080/10400435.1998.10131959 ​ ​ ​ ​ ​ ​ ​ Office of the Auditor General of Ontario. (2019). News release: ODSP costs up 75% in 10 years: Auditor General. https://www.auditor.on.ca/en/content/news/19_newsreleases/2019news_v1_3.09.pdf ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773 ​ ​ ​ ​ ​ ​ ​ Ontario. (2005). Accessibility for Ontarians with Disabilities Act, 2005, SO 2005, c 11. https://canlii.ca/ t/52pzh (retrieved on 25 February 2021). Ontario. (2020). Building a strong foundation for success: Reducing poverty in Ontario (2020–2025). https://www.ontario.ca/page/building-strong-foundation-success-reducing-poverty-ontario-2020 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -2025 Ontario. (n.d.). Eligibility for ODSP income support. Ministry of Children, Community and Social Services. https://www.mcss.gov.on.ca/en/mcss/programmes/social/odsp/income_support/IS_Eligibility.aspx ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Ontario Basic Income Network. (n.d.). Basic income 101. https://www.obin.ca/basic_income_101 ​ ​ ​ ​ ​ ​ Pfeffer, A. (2020, November 8). Province’s move to hire fraud investigators angers social assistance recipients. CBC News Ottawa. https://www.cbc.ca/news/canada/ottawa/social-assistance-recipients ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -and-advocates-angry-over-priority-to-hire-fraud-inspectors-1.5791196 ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Plante, C. (2019). Policy or window dressing? Exploring the impact of poverty reduction strategies on poverty among the Canadian provinces. Journal of International and Comparative Social Policy, 35(1), 112–136. https://doi.org/10.1080/21699763.2018.1549090 ​ ​ ​ ​ ​ ​ ​

Advancing income security policy using universal design  803 Regg Cohn, M. (2020, December 9). Doug Ford and Bonnie Lysyk team up to go after some of Ontario’s most vulnerable. Toronto Star. https://www.thestar.com/politics/political-opinion/2020/12/09/doug ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -ford-and-bonnie-lysyk-team-up-to-go-after-some-of-ontarios-most-vulnerable.html ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ Series, L. (2020). Disability and human rights. In N. Watson & S. Vehmas (Eds.), Routledge handbook of disability studies (2nd edn, pp. 72–88). Routledge. Shakespeare, T. (2006). The social model of disability. In L. J. Davis (Ed.), The disability studies reader (5th edn, pp. 197–204). Routledge. Smith-Carrier, T. (2017). Reproducing social conditions of poverty: A critical feminist analysis of social assistance participation in Ontario, Canada. Journal of Women, Politics & Policy, 38(4), 498–521. https://doi.org/10.1080/1554477X.2016.1268874 ​ ​ ​ ​ ​ ​ ​ Smith-Carrier, T. (2019). Universality and immigration: Differential access to social programmes and societal inclusion. In D. Béland, G. Marchildon, & M. J. Prince (Eds.), Universality and social policy in Canada (pp. 155–178). University of Toronto Press. Smith-Carrier, T. A., & Green, S. (2017). Another low road to basic income? Mapping a pragmatic model for adopting a basic income in Canada. Basic Income Studies, 12(2), 1–25. https://doi.org/10 ​ ​ ​ ​ .1515/bis-2016-0020 ​ ​ ​ Smith-Carrier, T., & Lawlor, A. (2017). Realising our (neoliberal) potential? A critical discourse analysis of the poverty reduction strategy in Ontario, Canada. Critical Social Policy, 37(1), 105–127. https:// doi.org/10.1177/0261018316666251 ​ ​ ​ ​ Smith-Carrier, T., Kerr, D., Wang, J., Tam, D. M., & Ming Kwok, S. (2017). Vestiges of the medical model: A critical exploration of the Ontario Disability Support Programme in Ontario, Canada. Disability & Society, 32(10), 1570–1591. https://doi.org/10.1080/09687599.2017.1359495 ​ ​ ​ ​ ​ ​ ​ Smith-Carrier, T., Montgomery, P., Mossey, S., Shute, T., Forchuk, C., & Rudnick, A. (2020). Erosion of social support for disabled people in Ontario: An appraisal of the Ontario Disability Support Programme (ODSP) using a human rights framework. Canadian Journal of Disability Studies, 9(1), 1–30. https://doi.org/10.15353/cjds.v9i1.594 ​ ​ ​ ​ ​ ​ ​ Soldatic, K., & Pini, B. (2009). The three Ds of welfare reform: Disability, disgust and deservingness. Australian Journal of Human Rights, 15(1), 77–95. https://doi.org/10.1080/1323238X.2009.11910862 ​ ​ ​ ​ ​ ​ ​ Standing, G. (2017). Basic income: And how we can make it happen. Penguin UK. Story, M. F., Mueller, J. L., & Mace, R. L. (1998). The universal design file: Designing for people of all ages and abilities. Center for Universal Design. Tanweer, M. (2021, February 19). NDP MPP says outsourcing of employment services could hurt immigrants. Toronto Star. https://www.thestar.com/news/canada/2021/02/19/ndp-mpp-says-outsourcing ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -of-employment-services-could-hurt-immigrants.html ​ ​ ​ ​ ​ ​ Tarasuk, V. (2017). Implications of a basic income guarantee for household food security. Northern Policy Institute. Research Paper No. 24. https://yrfn.ca/wp-content/uploads/2018/05/Implications-of ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -a-BIG-for-Household-Food-Insecurity_PROOF.pdf ​ ​ ​ ​ ​ ​ ​ Thomas, W. (2020, February 24). Ford hires U.S. firm to push Ontarians off welfare. Toronto Star. https://www.thestar.com/opinion/contributors/2020/02/24/ford-hires-us-firm-to-push-ontarians-off ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ -welfare.html ​ Thompson, S., & Hoggett, P. (1996). Universalism, selectivism and particularism: Towards a postmodern social policy. Critical Social Policy, 16(46), 21–43. https://doi.org/10.1177/026101839601604602 ​ ​ ​ ​ ​ Turner, B. S. (2006). Vulnerability and human rights. Penn State University Press. United Nations. (n.d.). Article 3 General Principles. Department of Economic and Social Affairs. https:// www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ ​ article-3-general-principles.html ​ ​ ​ ​ Vanhala, L. (2010). Making rights a reality? Disability rights activists and legal mobilization. Cambridge University Press. Vick, A. (2012). Theorizing episodic disabilities: The case for an embodied politics. Canadian Social Work Review/Revue canadienne de service social, 29(1), 41–60. Waddington, L. (2011). The European Union and the United Nations Convention on the Rights of Persons with Disabilities: A story of exclusive and shared competences. Maastricht Journal of European and Comparative Law, 18(4), 431–453. https://doi.org/10.1177/1023263X1101800404 ​ ​ ​ ​ ​ Williams, F. (1992). Somewhere over the rainbow: Universality and diversity in social policy. In N. Manning & R. Page (Eds.), Social Policy Review (vol. 4, pp. 200–219). Social Policy Association.

804  Research handbook on disability policy Zola, I. K. (1989). Toward the necessary universalizing of a disability policy. The Milbank Quarterly, 67(Supplement 2), 401–428. https://doi.org/10.1111/j.1468-0009.2005.00436.x ​ ​ ​ ​ ​​ ​ ​ ​ ​

68. Narrative 20: Living with a disability: what difference would a guaranteed livable income make? Joe Foster

It is estimated that 22 per cent of Canadians live with a disability. As our society ages, this number will probably grow in spite of medical advances. Disabilities can be minor, significant, or hidden, but in some way they limit our ability for full participation in society. The physical or mental challenges faced by a person with disabilities may be a barrier to success. But the attitudes of the non-disabled create an even stronger barrier. Historically, prejudices led even to death. Aristotle, for example, made the claim that there should be “a law that no deformed child shall live”. Eugenic policies were supported in the early 20th century by a number of Canadians, including medical professions, politicians, and feminists. Eugenicists believed that poverty itself was an “undesirable” characteristic that was almost exclusively hereditary. The major shift in attitudes did not really occur until after the horrors of the Holocaust were revealed. Attitudes change slowly. For persons with disabilities, the financial support and services we need still remain an aspiration. What we want, and have the right to, is to enjoy a decent standard of living, self-esteem, and the respect of others. For those unable to work in the labour market, successive governments have generally reduced rather than increased financial support. With inflation and the housing crisis, many disabled people have been thrust into abject poverty. For those of us wishing to work, barriers make it difficult to find work that matches interests and capabilities. Current statistics are unavailable, but it is likely they are the same or worse than the 2017 Statistics Canada figures which indicated that a mere 40–50 per cent of us are employed, compared with 80 per cent of the rest of the population. The same report suggested that 645,000 persons with disabilities had the potential for paid employment were the labour market to be inclusive. We all know that income insecurity is not limited to persons with disabilities and is part of Canadian history. Senator Croll, in his seminal report 50 years ago, identified the problem: “The poor do not choose poverty. It is at once their affliction and our national shame.” Poverty still remains a significant issue today for about 1 in 7 Canadians. And, not surprisingly, persons with disabilities often find themselves at the bottom of the economic ladder. On the positive side, progress is being made. A major step forward is the 2019 Canada Accessibility Act designed to make “An Accessible Canada for Persons with Disabilities”. The United Nations Convention on the Rights of Persons with Disabilities, which Canada ratified in 2010, calls for the recognition of “the right of persons with disabilities to work on an equal basis with others” by providing a work environment that is “inclusive and accessible to persons with disabilities”.

805

806  Research handbook on disability policy Unfortunately, one of the problems all Canadians face is our lingering attitude to “work”; it is vastly outdated. Much of the “work” we do is presently unpaid. Raising children, caring for the elderly, and volunteer activities are all critical work for social and economic wellbeing. I doubt if most Canadians realize that persons with disabilities volunteer. Where possible, we are part of the labour force and, as such, taxpayers. It is obvious that the lack of a livable income causes mental stress for individuals and their families, which jeopardizes health. On the other hand, income security offers greater freedom of choice and the liberty to plan for the future. In its simplest form, poverty can be described as a lack of self-worth and the lack of financial resources, both interrelated. While not a panacea, a Guaranteed Livable Income (GLI) for those living below the poverty line, provided regardless of work status, would allow us to feel and be seen as ordinary members of the community. With this as a foundation, focus can then be given to the urgent need for the proposed Canada Disability Benefit programme. If well-designed, it would have a number of distinct but linked elements. First, a minimum unconditional cash grant of say $200 per month above the GLI, to cover special basic costs that all persons with disabilities experience. This could replace the present disability tax credit. Second, by refining the different categories of disabilities, standards can be set and a special fund created to supply the specific tools needed for accommodation, preferably as an automated service where possible. Beyond this, the special finances and support services needed must be determined in collaboration with all levels of government designed for the specific needs of each individual. (Throughout the exercise, it is vital to observe the motto “Nothing for us, without us”.) Finally, it is not only the attitudes of society that make the difference but also how a person with a disability intersects with their surroundings. One can fight, ignore, be angry, or be amused. All have their place, though a good sense of humour will often dispel a tense or uncomfortable situation. I recall the time when an elderly lady hobbled over to help me up some steps. She practically tried to carry me. I could have been embarrassed or angry, but it was actually quite amusing ... and she felt good about it!

69. A human rights-based approach to assistive technology provision in global policy Catherine Holloway, Giulia Barbareschi, Oriol Valles Codina, Nora Colton, Arne Henning Eide, Zuleima Dafne Morgado-Ramirez, Jamie Danemayer, Rainer Kattel and Victoria Austin

1. INTRODUCTION The 2006 United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) explicitly stated the human rights to which persons with disabilities are entitled. Assistive products (APs) and the services which provide them, collectively known as assistive technology (AT), are declared essential to the realization of these human rights (MacLachlan, Banes, et al., 2018; Smith et al., 2019). APs comprise a wide array of devices – hearing aids, eyeglasses, wheelchairs, prosthetics, or digital devices with accessible software; and when provided through services which can expertly assess and train the user, APs can increase an individual’s quality of life (WHO, 2018a). However, 90% of people who need APs do not have access, and many who have access have products which are inadequate for their needs or lack training to use their product. This under-met need means people, particularly in low-resourced settings, still live with a functional loss. This need persists despite systematic attempts to expand the existing AT provision systems of most of the 177 UNCRPD signatories (Smith et al., 2019). Smith et al. (2019) have analyzed Party UNCRPD reporting against the commitments to assess engagement by countries in developing and implementing AT policies which promote participation for persons with disability. The review found systems for AT provision existed but lacked evaluation. Without evaluation methods, we are unable to assess the efficacy of existing systems and determine which are best placed to fulfill the AT need and which are failing. Since 2000, there has been a growing coherence of global initiatives in AT (their full history is given in Layton et al., 2020). Following the ratification of the UNCRPD in 2008 and the publication of the World Report on Disability in 2011, the UN 68th General Assembly requested the World Health Organization (WHO) to coordinate a global initiative for AT (2013). In 2014, the WHO Global Collaboration on Assistive Technology (GATE) was established, which has spearheaded a series of initiatives, for example, the WHO Priority Assistive Products List (APL) and the WHO GReAT Summit, both in 2017. In 2018, the World Health Assembly passed a resolution on improving access to AT in its 71st session, which mandated the first Global Report on Assistive Technology to be published in 2022. In amongst this momentum, the AT2030 program was launched at the Global Disability Summit at the Queen Elizabeth Olympic Park in 2018. 807

808  Research handbook on disability policy The AT2030 program was developed by the Global Disability Innovation Hub in close collaboration with the WHO and partners. The launch of the program was announced alongside the formation of the ATscale Global Partnership for Assistive Technology (ATscale); the AT2030 program would test what worked in getting AT to people globally, with activity focused on low- and middle-income countries (LMICs). Learnings from the AT2030 program could then be leveraged and scaled up by ATscale to meet the Sustainable Development Goals. We review recent efforts to strengthen AT systems and leverage Human Rights-Based Approaches (HRBA) to promote fairer AT provision and increase AT access. We first outline the work of the GATE initiative’s framework for analyzing AT systems. Then we introduce the case study of Norwegian AT service delivery. Next, we explore current financing mechanisms for regulating AT access, highlighting existing pitfalls, and proposing strategies to better leverage innovation in the sector. We then focus on examining the learning from the AT2030 program in addressing “the systematic failures [of the AT sector] which cause a mismatch in supply and demand, creating chronic and critical failures in provision of AT for disabled people globally” (Holloway et al., 2018). We reflect on how an HRBA affects the ways in which global and national organizations and initiatives organize and campaign for change. We conclude with a discussion and the limitations of our enquiry.

2.

THE WHO GATE INITIATIVE AND A CASE STUDY OF HRBA TO AT

2.1

WHO GATE

The GATE initiative is a flagship program of the WHO on AT. It exists to advocate for and provide evidence to advance AT provision globally, and specifically through universal health coverage (UHC). A first initiative of GATE was to advance the APL, which is equivalent to the WHO’s essential medicines list. The list was the starting point of GATE attempting to standardize what nation states should provide as a minimum for their citizens living with disabilities to fulfill their human rights. The GATE initiative is a global collaboration which realized the complexity of providing AT. To improve access to assistive technology, GATE has developed the people-centered assistive technology ecosystem which describes the need to address the entire complexity of AT systems across a 5Ps framework (Khasnabis et al., 2020). This framework is drawn from the UNCRPD and is reproduced in Figure 69.1. At the center are AT users and their support network. To ensure people get access, it is critical to have global and national policies, with associated data collection and financing structures to ensure that high-quality AT is affordable to all citizens through UHC (WHO, 2018b). A person-centric policy approach – in keeping with a human rights-based approach – is essential to ensuring that products match users’ needs. Policy is central in the 5P framework and enables the others, including the products themselves, the personnel to provide and train people to use the products, along with resilient and efficient provision systems.

A HRBA approach to assistive technology provision in global policy  809

Figure 69.1 2.2

WHO GATE 5P model of assistive technology

The Right to AT: Case Study of Norwegian Assistive Technology Service Delivery

Here, we demonstrate how this approach operates in practice, using the Norwegian assistive technology service delivery program, which we call the “Norway Model,” as a case study (Federici et al., 2016; Holloway, 2019). The Norwegian AT service delivery system was piloted in 1977 (Sund, 2017). Development was driven by close collaboration between the Ministry of Health and Social Services (MoHSS), Disabled People’s Organizations (DPOs), professional organizations, and the applied research agency SINTEF leading the process and harboring the secretariate of the Council for Assistive Technology. Development was also strongly rooted in a Nordic collaboration on service delivery models, involving the testing and development of standards in the field of AT. This system is organically structured across the 5Ps framework. 2.2.1 Policy From 1995, a uniform, public, and national system for AT was in place in Norway, organized under MoHSS and, today, the Norwegian Labour and Welfare Administration (NAV). This system is based on principles of equal access nationally and is funded through National Insurance. This is a rights-based system embodied in Norwegian law for individuals who meet the necessary criteria. NAV administers the funding and provides AT, maintenance, repair, and other services for free to improve functional capacity in everyday life and in the workplace. 2.2.2 Products Practically, assistive products are part of a library where they are on loan and returned to the Assistive Technology Centers (ATC) when no longer in use or in need of replacement. Private suppliers compete to get their products into the assortment of NAV and the ATCs, with one located in each of the 19 counties (prior to recent reform reducing the number of counties).

810  Research handbook on disability policy On average, people are provided with three devices per person, which can be returned and up/ down-graded as needed, leading to sustainable provision. 2.2.3 Provision ATCs purchase APs based on the central tender system and distribute them to individuals and municipalities. The ATCs are responsible for AT for individuals with significant and permanent impairments, while municipalities/local authorities are responsible for funding and delivering AT in case of temporary disabilities and for residents at nursing homes. Municipalities also have a responsibility to determine need and follow-up after extradition, regardless of whether the need is permanent or temporary, and refer to the ATCs when deemed to be appropriate after professional assessment. The ATCs provide guidance to the municipalities when required. While also funded through NAV, hearing services and orthopedic services are provided through hearing centers based at larger hospitals. 2.2.4 Personnel Regional ATCs are staffed with relevant trained personnel (e.g. occupational therapists and physiotherapists) responsible for assessing the needs of users, recommending appropriate ATs, and ensuring that individuals have access to training and follow-up services. Professionals at regional centers are also responsible for identifying and referring those individuals who might need more specialized assistance that is unavailable within their local community. Personnel at national ATCs include professionals with expert knowledge of a broader variety of ATs across functional domains of vision, hearing, communication, mobility, self-care, and cognition. The centrality of the individual is an essential feature of the Norway Model. The goal of the system is to ensure that the person is granted access to the products and services essential to the fulfillment of one’s needs and aspirations. In this context, the importance of a collaborative assessment approach where users can discuss their daily needs and personal goals becomes essential. Finally, great emphasis is placed on making sure that equal levels of access are guaranteed to the individual regardless of their characteristics, financial status, and living environments. 2.2.5 Continuous improvement Different data systems keep track of the number and age of users of AT, types of AT the government offers, costs, processing times, delivery times, and more. A government-appointed expert committee delivered their report in February 2017 A More Effective and Forward-looking AT Service Delivery System – for Increased Participation and Coping (Oslo, Ministry of Labour and Social Affairs, 2017). The title indicates participation as an overall goal for these services, based on the idea that this is beneficial for both the individual and society. The report was based on a comprehensive investigation of different aspects of AT services and seen in the light of other large reforms in the Norwegian health and welfare system during the last 10–15 years. The committee concludes that the current AT service delivery system needs adjustments but that the overall model should be maintained. The committee further concludes that good, timely access to appropriate assistive devices is a decisive factor for individuals with functional difficulties to live independent lives and participate in society – and this is, without doubt, beneficial for society, i.e. offers value for money. The case of Norway is exceptional, paralleled only by a similar system in Sweden. This Norwegian system (and its sibling in Sweden) is a well-developed and resourced national

A HRBA approach to assistive technology provision in global policy  811 approach with a consensus commitment to a public provision through a welfare system that supports its citizens. AT provision from an HRBA is a consensus approach. However, the Norway Model is not immediately transferable to all settings and is not perfect. A recent study has pointed out that user involvement in the service delivery process, while high on the agenda in the Norwegian service delivery system, is still in need of improvements (Pedersen et al., 2020). It also requires considerable amounts of infrastructure and a high level of government funding which in turn requires high levels of taxation. For a variety of reasons, this system may not be possible to transpose to another country, or it may require additional tools to help make the case internally for budgetary needs. Finally, the Norway Model is built around a broader concept of a strong welfare state, which is prominent across Scandinavian countries (Baudin et al., 2020). In many countries across the globe, AT service delivery is based on a variety of systems ranging from private insurance schemes, partial subsidization, and consumer markets (ibid.). In particular, as the boundaries between AT and mainstream technologies become blurred, defining an “optimal” model to ensure access to AT becomes increasingly complicated (Holloway, 2019; Holloway & Barbareschi, 2021). This blur is important to acknowledge within disability and has specific relevance to the AT agenda. When functions originally within the domain of specialized assistive products such as synthesized speech become integrated into mainstream technology, they become more accessible to general consumers. However, this carries the consequence of uneven provision across the public, with structural inequalities being further embedded into the lives of persons with disability (Alper, 2017). To understand how we make the case for AT, it is essential we zoom out from the specific issue of AT provision, understand how the levels of healthcare economics are driving the need for innovation, and consider the implications of more accessible (and uneven) product provision as mainstream product innovation increases.

3.

FINANCING HEALTHCARE AND HEALTHCARE TECHNOLOGY INNOVATION

The World Health Assembly directive on AT sets a mandate for the inclusion of AT in UHC systems. UHC is an inspirational but feasible and measurable target of the Sustainable Development Goals to be achieved globally by 2030. To achieve this target, countries will need to ensure the equitable provision of AT through their respective healthcare systems. However, there is no universal health coverage roadmap; each country must develop its own and these will vary according to the country’s health finance system. Rwanda has provided universal eye care since 2010 by incorporating it into their national health system, including screening and provision of eyeglasses. However, this has not yet been expanded to other priority assistive products (AFB, 2013). In 2018, the Philippines incorporated benefit packages into the Philippine Health Insurance Corporation (PhilHealth) that targeted children needing orthotics or prosthetic devices, a wheelchair, glasses, and hearing aids. In April 2019, PhilHealth announced its preparation to expand benefit packages to all people with disabilities, with premium contributions paid for by the government through alcohol and tobacco taxes (PhilHealth, 2019). However, it is often the case that UHC is not met for AT or met only with charitable intervention. Data from 2016 show that 37.8% of AT is provided by national health services and 29.8% is obtained through supporting providers in South Africa, Namibia, Malawi, and Sudan

812  Research handbook on disability policy (Visagie et al., 2017). A 2020 survey found a mixture of organizations (government ministries, DPOs, and NGOs) in Malawi provide AT, mostly for free, but there is a strong reliance on donation. AT provision is thus uncoordinated, unsustainable, and not scalable (Smith et al., 2020). Although donations to AT fill a critical need, they sustain a fragmented marketplace. For example, there is evidence in the case of wheelchair provision that this leads to uneven distribution of products, variable product and training quality, and inhibited government engagement in funding the products and services centrally (ATscale & AT2030, 2019). 3.1

The Case for Innovation

Healthcare expenses are considered a major concern globally, with an estimated 10% of global GDP going to health-related expenditures. Moreover, some high-income countries with aging populations and rising non-communicable diseases spend upwards of 20% of their GDP on healthcare (WHO, 2018a). Health innovations in market-driven economies are seen as enabling increased access to health services and improved quality of health, yet simultaneously as the major contributor to rising healthcare costs. Thus, health technologies and innovations come under increased scrutiny and accountability to demonstrate added value in measurable health outcomes against delivery costs. Yet, measuring the impact of health technologies and innovations has never been easy nor consistent (Banta & Jonsson, 2009). Many innovators have struggled to show the benefits of their innovations using traditional health technology assessment (HTA) models. HTA is an interdisciplinary process for synthesizing information concerning medical, social, financial, legal, and ethical issues related to introducing new health technology. However, too often due to time pressures and data issues, only financial and medical issues get reviewed (O’Rourke et al., 2020). An HTA encompasses everything from public health programs to drugs and bionics to managerial systems, often categorized by their purpose (e.g. screening, prevention, rehabilitation) or stage of diffusion (e.g. experimental, established) (Goodman, 2014a). This makes HTA a very broad topic, beyond the scope of this chapter to fully explore. However, we summarize two standard approaches: integrative methods and economic analysis methods. Integrative methods include systematic literature reviews, meta-analysis, modeling, and consensus development (with more details available in Goodman, 2014b). Economic evaluations can include (1) cost-effectiveness analysis which compares strategies with outcomes in units such as life years, (2) cost-utility analysis which uses quality-adjusted life years or disability-adjusted life years, and (3) cost–benefit analysis, which transforms the outcomes into monetary units for comparisons. Although these methods have historically been seen as robust methods of supporting decisions, they are all about the decision-making process in the later phases of the innovation process when the technology has been tested, and there is a data set to work with for the decision-making (Philips et al., 2006). Furthermore, such rationalized evaluations lack the nuance necessary to fully capture the complexities of disability within the social model context (Mont, 2007). Despite the challenges of individual measures, HTA continues to dominate the decision-making in most national health systems regarding the adoption of new health technology and innovations (Kim et al., 2021). It is within these contexts that AT provisions and budgets are set. Yet the application of HTA models can be long and complex and vary across and within health systems. This is particularly problematic for the case of AT, as services are

A HRBA approach to assistive technology provision in global policy  813 spread across different medical domains, each with its awareness of AT. The definition of value is also not straightforward. Value is often expressed in narrow terms, such as the “best” health outcomes achieved in monetary metrics. Outcomes are equally problematic, with definitions such as changes in health ranging from specific healthcare investments to results of interventions that can range from clinical, self-report, and observation. All these factors mean that HTA models are increasingly being challenged. There is also the inability of LMICs to produce the necessary data and evidence to bring meaning to such an approach (Babigumira et al., 2016). The belief is being challenged that money spent on one group within society means that another group either does not receive treatment or another valued. This deficit perspective and approach is a long way from seeing health technologies and innovation as enabling the economy and creating growth within societies from innovation in health technologies. Lastly, we need to approach changes to HTA systems and models with a view of enabling and supporting a global health ecosystem rather than a fractured array of national health systems working in silos. Consequently, given the dramatic increase in innovative therapies and medicines coupled with a patient-centric approach to healthcare, the proposed changes in how AT is striving to be viewed and enabled through different value measures, and a move away from being seen within the health assessment framework, could not be timelier. There is sufficient room for a spillover effect from the work to reframe innovations in assisted technologies to assist the broader healthcare services and systems to grapple more disruptively with evaluating and enabling health innovations and technologies as well.

4.

LEARNINGS: A GLOBAL FRAMEWORK FOR DISABILITY INCLUSION, BEING TRIALED THROUGH AT

4.1

AT and Missions

AT must be based on new economic foundations that go beyond fixing market failures, focusing instead on shaping markets to unleash AT innovation dynamics (Albala et al., 2021). Within the global health sector barriers in health access and delivery have been addressed by directing the marketplace (Albala et al., 2021). Market shaping can enhance market efficiencies, improve information transparency, and coordinate and incentivize the numerous stakeholders involved in supply- and demand-side activities including through: pooled procurement, de-risking demand, developing market intelligence reports, standardizing specifications, establishing pricing agreements, and improving service delivery and supply chains. An example can be found in the product narratives of the AT2030 program, e.g. wheelchairs (ATscale & AT2030, 2019). This work is complemented by a mission-led approach which takes a higher-level viewpoint of the economy and priorities of a government. The mission approach is based on theoretical and policy frameworks and toolkits that rely on the understanding that economic growth has not only a rate but also a direction (Mazzucato, 2016, 2018). A full vision of missions for AT is given by Albala and colleagues (Albala et al., 2021). Albala points to examples from the UK’s All-Party Parliamentary Group for Assistive Technology which used assistive technology as an important component for addressing the challenges and questions of an aging society, artificial intelligence, and the future of mobility.

814  Research handbook on disability policy Missions shape the direction of innovation by helping public, private, and third-sector actors make strategic investments across several fields, and by nurturing innovation and industrial landscapes to grow (Mazzucato, 2018). Missions can be used as a mechanism to focus research, innovation, and investments on solving crucial problems. With a strategic direction, missions enable new possibilities of bringing different actors to spur collaboration and help redefine what these cross-sector relationships can look like (ibid.). 4.1.1 Value at a mission level Providing AT to all that need it around the world would yield more than USD 10 trillion in economic benefits over the next 55 years (ATscale, 2020, p. 6). At a family level, the report estimates that over the lifetime of a single child in an LMIC, there would be a USD 100,000 increase in income (ibid.). The report finds return on investment will have “ripple effects” constituting a 9:1 return on investment in activities that strengthen and improve access to AT systems and products in LMICs, alongside an increase in over 1 billion quality-adjusted life years (ibid.). The value of AT as measured above already demonstrates a compelling case for the provision of AT. However, these conventional methods based on cost–benefit analysis narrowly define “benefit” according to standard health economic evaluation frameworks. These frameworks can fail to capture the full value that arises from AT service delivery, access, and user interactions. Therefore, the value could be higher still. Taking a holistic view of the full value chain shows how investing in the human rights of AT creates numerous employment opportunities and innovation spillovers that will readily be recovered over the initial investment cost. In this sense, the AT innovation chain, from design to use, can be seen within its industrial ecosystem. AT enables human capability, but its value should be more accurately framed beyond the benefit to the individual; models should incorporate economic, individual, and societal growth. In this direction, input–output and social network analysis of AT sectors provide helpful insights into the location and relevance of AT within the supply chains forming the whole of an economy (Valles Codina, 2022). This is especially true in the context of developing economies where many AT assessments within developed economies cannot be simply extrapolated. Interdependencies arise due to the existence of complementarities between industries at the level of investment and production activities. Due to these mutual relationships, a change in the production in one industry is transmitted to others through a multiplier effect (ibid.). The chain of transmission can run from customer to supplier industries (backward linkages) or from supplier to user industries (forward linkages) (ibid.). AT industry actors are well connected via many input–output linkages in production to the rest of the economy. AT and health-related sectors mainly occupy downstream positions in the value chains of their respective countries, especially catering to consumers of final goods while supplying from a wide range of industrial sectors (ibid.). To illustrate this, Indian manufacturing of hearing aids and ophthalmic goods features one of the highest upstream output multipliers among all Indian industries, as high as 307%, implying for each dollar invested, an extra $2.07 enters its supplying industries. In this context, upstream propagation of demand shocks induced by additional investment will dominate, spilling over to the rest of the production ecosystem. Conversely, supply-led effects of investment on AT will especially benefit consumers, either as final or investment goods, by reducing their price. A downstream example is Mexican manufacturing of medical equipment; although its output multiplier is relatively low (140%), it belongs to one of the most significant sup-

A HRBA approach to assistive technology provision in global policy  815 plier industries in that economy and occupies a central position in its production ecosystem. Investment in Mexican manufacturing of medical equipment thus yields positive cost efficiencies in the whole economy (ibid.). This shifts the argument of economic growth from that of the individual or their family to the overall growth in the economy. 4.2

Global Disability Inclusion: The Mission

Since the London 2012 Paralympic Games, a model emerged that underpins the work of the Global Disability Innovation Hub and prompted the AT2030 program design. This model has recently been formalized and published by Austin et al. (2021) and is shown in Figure 69.2.

Source: Austin et al. (2021).

Figure 69.2

Disability inclusion model

This model of disability justice complements the mission-led approach, acting as a mechanism to develop and use large-scale initiatives (e.g. the Paralympics) to catalyze change already identified by community leaders. The HRBA for disability is founded on a “nothing about us without us” approach which is essential not only from an ethical and rights standpoint but also from a pragmatic and implementation point of view. People with disabilities are the best people to articulate the needs of society to be disability-inclusive, and without these voices amplified to political leadership, subsequent work will struggle to succeed. Once steps one and two are achieved, clear missions are set with time-limited actions. This approach is akin to mission-setting. In the 12-step model, the multiple-level, bottom-up solutions are the starting point of the mission-setting process.

816  Research handbook on disability policy 4.3

Strengthening and Valuing AT Systems

4.3.1 Data and tools to develop policy Governments must holistically understand the prevalence of AT indicators, such as need and coverage, in their population, which means not equating an impairment prevalence to the prevalence of need for a relevant AP, as this fails to capture the influence of context-specific factors on the effective use of APs (Boggs et al., 2019; Danemayer et al., 2022). The relationship between an individual and their APs is complex and unique, influenced by social needs, physical capacities, and environment. This key aspect of AP provision limits how its impact can be comprehensively assessed, as these highly individual factors must be anticipated and accounted for in a standardized way. Collecting these data through rapid assessments is a relatively new method of data collection that addresses several barriers to researching complex interventions like AT at the population level. These standardized surveys typically train local staff as assessors; can be translated and conducted in different countries; and produce results that can be compared to inform a global understanding of the sector and used to scale marketplaces. Current “assessments” for disability certification are not comprehensive measures of support needs. Even those moving away from medical diagnoses and impairment-based determinations to functional ones tend to miss data about AT, personal assistance, or other needs. If AT-specific data collection becomes part of a government’s routinely collected administrative data, it becomes more sustainable and provides insight on the whole population applying for benefits. Of course, not all people who need AT apply for disability benefits. But if disability, health, and rapid assessments use the same tools, then the data will be harmonized and can be considered together. The WHO developed the Assistive Technology Assessment (ATA) toolkit to enable governments to assess population-level needs and the capacity of the government to provide for these needs through current policies and systems (WHO, 2021). The toolkit aims to answer three key questions: ● What are the met and unmet population needs in terms of access to assistive technology? Answered though the rapid Assistive Technology Assessment (rATA). ● What is the country’s capacity to meet the identified unmet need? Answered through the Assistive Technology Capacity Assessment (ATA-C). ● What is the impact of assistive technology on the people who use it? Answered through the Assistive Technology Impact Assessment tool (ATA-I). The rATA is a household survey that, over and above other surveys, distinguishes AT data collection and the generation of AT indicators, which can be disaggregated by key demographic variables. Specific subsets of the data (for example, the total reporting dissatisfaction with AP services in a specific location) can be explored in depth through individuals’ open-ended responses within the rATA, and a follow-up study in the targeted area or population can be carried out to identify AT delivery system failures or bottlenecks. Investigating high under-met needs regarding a specific product (i.e. individuals who already have an AP report but they are unable to effectively use it) demonstrates that APs are not universally useful and identifies important design implications. Patterns in these data can indicate where AP designers may have overlooked specific populations, environments, and settings, which carry further implications for officials tasked with importing APs and developing accessible infrastructure. Currently, the rATA has been conducted in 35 countries, the results of which have supported

A HRBA approach to assistive technology provision in global policy  817 the first WHO and UNICEF global report on AT (World Health Organization & UNICEF, 2022). The ATA-C has been conducted as part of a Country Capacity Assessment (CCA) at the population level in Indonesia, Mongolia, Malawi, Liberia, Rwanda, Sierra Leone, Ethiopia, Uganda, and Nigeria, with Vietnam, the Dominican Republic, and Bolivia in progress. A review of these investments found that completing this assessment led to a raised level of awareness of AT issues; a greater degree of coordination among AT actors in each country; and in most cases, the creation of new working groups across different government ministries and non-governmental partners to aid coordination (Bostian, 2020). In some countries, new policies have been developed because of completing the CCA with an associated budget, and in other countries, the findings are informing ongoing policy development (ibid.). 4.3.2 One-stop-shop The one-stop-shop model integrates four of the five Ps of the WHO model and aims to create a single place where personnel can provide products to the people who need them through an innovative provision model. In collaboration with the Ministry of Health and partners, the WHO is piloting a one-stop-shop model in Tanzania and Tajikistan, including procurement of assistive products, workforce training, the establishment of referral mechanisms, and other related activities supporting the publishing and implementation of a manual on the one-stop-shop concept for access to assistive products from the community level and up. This model builds on the Norwegian Model and will be evaluated in due course through AT2030. 4.4

Developing User-Centered Innovations

Innovation in the design, development, and distribution of products and services plays a key role in increasing access to AT (Smith et al., 2018). Innovation can also produce significant economic and social value, not only to direct beneficiaries but to society at large through a ripple effect that comprises both tangible and intangible elements (Phillips & Phillips, 2020). Still, entering the AT market can be incredibly challenging for many innovators and entrepreneurs due to a series of factors ranging from fragmented markets, high need but low demand for products, convoluted supply chains, and a lack of direct links with potential users (MacLachlan, McVeigh, et al., 2018). Hence, capturing the value of AT innovation at every step, for both target users and stakeholders involved in the process of development and deployment, is crucial to nurture and scale up innovations that are impactful as well as sustainable. When launched in 2019 by UK aid, AT2030 aimed to nurture, promote, and scale disruptive innovations that could increase access to ATs. To achieve this goal, the GDI Hub team developed an ecosystem approach. It was first co-deployed in Kenya with local partners through Innovate Now, Africa’s First AT Accelerator (www​.atinnovvatenow​.com), with the aim of expanding to similar contexts. Through the GDI Accelerate ecosystem of activities, now encompassing the AT Impact Fund, Innovate Now, and Local AT Production Innovation, innovators and other stakeholders can harness the full value of ATs at an individual, business, and societal level (Holloway et al., 2019). Research on value and impact is embedded into all levels of the ecosystem and includes work with start-ups and early-stage ventures. We have uncovered hidden value in the local production of AT. A five-month research study with Motivation UK assessed the potential of using a combination of traditional and additive digital manufacturing to create bespoke manual wheelchairs in Kenya (Barbareschi,

818  Research handbook on disability policy Daymond, et al., 2020). The model attempted to overcome the challenges of importation by enabling local production of devices while leveraging digital tools to ensure the quality of the wheelchairs remained consistent (ibid.). As well as being both feasible and acceptable, this approach delivered an increased sense of ownership, and users found the wheelchair more attractive as they were part of the design process, which reduced the stigma attached to wheelchair use (currently a chief factor limiting demand for AT) (Holloway et al., 2018). The skills acquired by providers in this project can be redeployed to enable the production of other types of mobility AT, or improve current wheelchair assessments (Barbareschi, Daymond, et al., 2020). Another example of hidden value generated by AT innovation is represented by the Ugandan company Wazi Vision, which produces affordable and sustainable eyewear and is supported by the Assistive Tech Impact Fund. Wazi Vision’s manufacturing approach uses locally recycled plastic, which allows them to produce glasses that are significantly cheaper than imported models (20$ vs 150$). Second, the reliance on local resources enabled Wazi Vision to maintain production throughout the COVID-19 pandemic, avoiding the international supply chain disruptions. Finally, their Afrocentric branding focus drove them to invest in local calls for artists to design glasses that would suit the features and preferences of local customers. This decision has the potential to support local designers and artists, and create products that are more appealing and contextually appropriate, increasing their reach and decreasing the potential for stigma. Both these examples show how innovation can improve the functionality and looks of the products or the systems used for service delivery of AT, whilst also increasing the potential reach and impact of AT more broadly. 4.5

Beyond Health: Consumerist Models

Mainstream technology is increasingly designed with digital accessibility, even specific conditions, in mind. Digital accessibility ensures hardware and software are usable by as many people as possible. Mainstream technology is increasingly designed with digital accessibility, even specific conditions, in mind. Digital accessibility ensures hardware and software are usable by as many people as possible. As companies align with accessibility laws to gain competitive advantage, the line between what is and is not AT becomes blurred (Holloway & Barbareschi, 2021). Growth in this area promises increased availability, but with two challenges: equality of access and an over-dependence on product provision above the wider technology ecosystem which is necessary to provide adequate AT coverage. A recent study exploring the roles, expectations, and pitfalls of communication aids for people with speech and writing challenges for nonverbal children found that, whilst the Augmentative and Alternative Communication (AAC) (delivered on an iPad) allowed for self-expression, it also enhanced social inequalities; higher-income parents were able to protect the device better (through purchasing of cases) and were better able to access resources to aid AAC use (Alper, 2017). There were also different social norms around the use of the device and “screen-time.” The AAC device was used for both fun and communication; screen-time was more valued as it created meaningful and otherwise inaccessible social connections within the family. This intermixing is not only in the digital domain. Devices like walking sticks or reading glasses are easily found in many high street shops, pharmacies, or online retailers. This

A HRBA approach to assistive technology provision in global policy  819 individual out-of-pocket expenditure was demonstrated in the 2019 rATA pilot in Pakistan, finding 7.2% (of 62,723 respondents) used at least one AP and 90% paid for it out-of-pocket (Mallick, 2019). Technology advancements are making it more possible for individuals to purchase increasingly complex and expensive APs such as mobility scooters, motorized wheelchairs or, as discussed above, AACs (Andrich, 2016). This trend will lead to a larger proportion of assistive technology provision through a neoliberal model rather than an HRBA, yet this is consequential and not inevitable. 4.6

HBRA Appraisal

By shifting our mindset to one where AT is a critical component of healthcare coverage, we can develop missions and measurement tools which make a case for AT as a critical component of the economy more broadly. By developing programs using the 12-step model, the rights and voices of persons with disability are the drivers; they lead and control the policies and programs affecting them. This ensures an HRBA is more easily embedded into the design and delivery of the policy program, a priority illustrated by tools developed by the WHO to help governments provide robust and affordable AT systems. As an alternative approach to individual purchasing power being a driving force, governments could acknowledge technologies as they emerge as assistive. It is essential that training in the use of these products is incorporated into national budgets. This would prevent cases where people with disabilities are unable to use, for example, mobile phones, when they are provided (Barbareschi, Holloway, et al., 2020). Training must be expanded to teachers and caregivers. An excellent example of this provisioning model has been developed by the Kilimanjaro Blind Trust Africa as they roll out a new Braille reader across Africa for use by children with visual impairments (Holloway & Barbareschi, 2021). The provisioning model includes teacher training, repair technicians, and child training. Beyond the financing of emerging products, governments can consider the need for accessible infrastructure, from inclusively designed public buildings such as schools and hospitals. Whilst some will continue to advocate for a more neoliberal model (Andrich, 2016), we would concur with Andrich and colleagues that there will always be a need for intermediary assistive product delivery systems (Andrich, 2016), as this serves the (1) ethical agenda – it aligns with an HRBA and ensures a baseline of equality across the population, (2) financial agenda – bulk purchase enables reduced product costs, and allows for recycling and repair which further reduces costs to the bursary and planet, (3) expertise agenda – this allows for specialist expertise to aid in the AT matching process, complementing and not to the exclusion of the expertise of people with disabilities’ experience, and (4) coordination agenda – this ensures the provision of AT is integrated into a wider package of support for a person.

5. LIMITATIONS There are several limitations in the chapter. The most obvious is that it draws heavily from one program, albeit a large one, to develop the framing. This is mitigated through the fact it is aligned and co-developed with the WHO and the relevant partners in scale. Second, due to space, we have chosen to focus on health, which also limits the chapter. Increasingly, AT is being developed and provided outside of health, especially within the digital space (Holloway,

820  Research handbook on disability policy 2019; Khasnabis et al., 2020). The education domain and inclusive education technology (ed-tech) are increasingly important and relevant within the UN system led by UNICEF. Third, AT is only usable when the environment and society are inclusive. Elements of AT2030 address these issues of inclusion in the built environment and the role of stigma in enabling inclusion. However, space did not allow for their inclusion here.

6.

CONCLUSION AND RECOMMENDATIONS

AT is essential to the realization of human rights for people with disabilities. Without AT, people are excluded from all elements of society. AT is a part of the wider healthcare technology sector into which it needs to integrate to allow for UHC to be achieved, and data is key to enabling this aim. Using an HRBA is essential to developing any AT policy. We demonstrate that by joining an HRBA with a mission-led approach, we can develop economies more generally and help build a case for AT within budgeting. The 12-step disability inclusion model is a way to develop programs and policies to ensure an HRBA is embedded into the whole process, from idea to assessment. Tools within the WHO ATA toolkit can help countries assess their ability to provide AT to satisfy a need. Finally, the ripple effects of innovation can be measured at a micro level to help further support policies.

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70. Conclusion on disability policy Sally Robinson and Karen R. Fisher

INTRODUCTION In this book we set out to understand disability policy in a global context from the perspective of people with disability. The handbook is focused on how policy is affecting the human rights of people with disability, and what else needs to change in policy to achieve social justice and equity. Our interest was in developing a rich account of disability policy and the plurality of approaches to implementing policy, analysing it and reflecting on what it means to live with the impact of policy. Across the handbook, the chapters give a picture of diversity in time and place but also common themes through people’s shared social experiences. Across the chapters, the authors apply a diverse range of disciplines key to understanding people’s experiences of policy, drawing from social policy, sociology, history, law, politics, public administration, health, social work, psychology, education, economics, ethics, technology, arts and design. These disciplinary approaches highlight the lived experience of policy in people’s social, political and economic contexts and bring different analytical lenses to the issues. In addition, the book uses narratives and other direct contributions from a wider group of people with disability to show how their experiences are closely intertwined with policy that can sometimes seem removed from the everyday, and how fundamental human rights are in progressing disability policy. In keeping with the approach of the book, contributions to chapters and narratives were invited internationally. The benefit of this invitation is that the chapters can be read in combination, for both contrast and common themes. The combination of these contributions offers a critical frame from which to understand ‘where to from here’ for disability policies that progress dialogue about realizing human rights. The themes that emerge from the combined contributions are discussed in this chapter. They include the way that human rights as a concept and in law and UN Conventions are influencing disability policy and how the future potential of that framing could be enhanced. Second, by examining disability policy across countries and in a global context, common experiences and opportunities for local change informed by other locations are highlighted. Third, the critical frame of the contributions demonstrates both the common intersectional experiences that people with disability face, and also the inequities and disadvantages imposed on people with diverse experiences within disability, gender, age and location. Fourth, as with any policy handbook, a consistent theme is the gaps between policy, implementation and lived experience. The remaining themes from the contributions are about the potential opportunities from and for disability policy processes. The way diversity stimulates policy innovation from responses to opportunities and barriers is especially evident in the economic inclusion section. The innovation theme in the contributions parallels with others that illustrate the wider benefits of inclusion and leadership from people with disability in policy and research. The generation of this handbook is an example of that process where chapter and narrative authors and contributors with disability add new perspectives about policy theory and experiences. The last theme 823

824  Research handbook on disability policy is about the potential for future disability policy change that learns from interdisciplinary, cross-cultural and global experiences.

HUMAN RIGHTS AND THE UN CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES The chapters demonstrate that a rights framework is informing general and specific policies affecting people with disability and is a useful framework for understanding the gaps in policies and implementation that urgently need to be addressed. The concepts and language of rights are gaining traction across policy contexts, either in official policy or in the advocacy from people with disability for greater equity in their specific context. The narratives illustrated the power of highlighting the direct voices of people with disability about their experience of their rights and their demands for change in policy and implementation. An advantage of this shift towards a human rights and social justice framework has been to challenge alternative frames of welfare, charity, medical and labour market positioning of the experiences of disability. When human rights inform policy change, the priorities for policy have changed. An example is changes to implement policy about inclusive education across the life course. The chapters highlight the advocacy and practices of implementing inclusion and the implications for the social and economic participation of children and adults with or without access to education. In critical discussions during the writing process, we took an expansive position that human rights are both policy and legal concepts, and also a social science concept about how rights affect equality, equity, entitlement and social justice. Taking that broader sense of rights mattered, because it supports a deeper exploration of the practicalities of human rights. It helped us to raise questions about the types of problems that we were concerned with from the beginning, about how human rights can influence policies about welfare, health and economics. The wide definition is also a way to understand the implementation gaps illustrated in the chapters. Further, it allows us to question the limitations to a human rights approach, particularly whether a universal human rights intention is applicable for only some people, for some purposes and for some places. As well as taking a critical approach in this handbook, many of the chapters also then respond to these limitations. They engage with questions about structural responses, such as through rights monitoring led by people with disability. They also examine particular contexts, such as access to universal systems like public transport. The UNCRPD is used as an instrument to bring people together to promote the rights of people with disability in national and local policies. That process has accelerated policy change in some countries. The central focus has also offered new comparisons for other countries about ways forward. The involvement of people with disability leading research and policy initiatives which progress this change is a feature of many of the chapters, making clear the importance of this deep involvement for advancing UNCRPD rights. Alongside the use of human rights instruments, human rights concepts also inform practical decisions. For example, literacy about human rights is a foundational concept embedded in several chapters. The discussions about understanding why rights matter demonstrate how it is the responsibility of all the parts of policy systems to be literate, with the intention of leveraging meaningful policy and practice change. The right to health, viewed through a human rights lens exemplifies this approach, where positive change is not the responsibility of the person

Conclusion on disability policy  825 themselves. Rather systems-level change is needed to meet the human rights of people with disability about major social issues such as genetic testing or scientific progress. The book uses the framework of human rights to examine the role of the state and the direction of disability policy. Policies that affect people with disability can be developed, informed and assessed through the lens of human rights. Human rights are not limited to civil and political rights. Of fundamental importance are also economic and social rights such as the right to food, education, housing, work and social security. In fact, economic and social rights are the focus of many disability policies. When policies neglect access to social services for people with disability, they also fail to address the discrimination that prevents other economic and social opportunities leading to the denial of multiple rights (Kayess & French, 2008).

GLOBAL AND LOCAL POLICY CONTEXT A major achievement for the rights of people with disability has been the ratification of the UNCRPD. At the time of writing, 164 countries had ratified the convention (https://​bit​.ly/​ UNCRPD​-Status). Government obligations to realize rights by most countries is an important step. However, realizing the rights of many people with disability remains far from their daily experiences. Formal state obligations or legal guarantees are by no means sufficient. The design and operationalization of appropriate policies is essential for the progressive realization of human rights. One of the advantages of the way that we approached this book on disability policy was to encourage contributions from around the world. Opportunities and constraints to change policy vary by country. The way people are positioned by their lived experience, by policy, access to services and opportunities for participation is determined by the historical position of people with disability in each time and place, as well as the social, economic and political context of that country. In many places, the UNCRPD has been a trigger and standard against which people have made claims for change. More indirectly, comparison to improvements in other places has provided evidence for people to support their claims for change in their own location. These comparisons include international comparisons, and local comparisons between city and rural areas. The global positioning of the rights of people with disability in a particular country can benefit from comparison with places with a similar context and culture, especially acknowledging the variation within and between the Global South and Global North (Grech & Soldatic, 2016). The narratives in the book illustrate this specificity well, emphasizing the daily concerns and priorities of people with disability, within their own context. Like the work of Grech and Soldatic, the chapters and narratives from Global South contributors in this handbook demonstrate the benefit of collaboration within and between locations to learn from each other about how to leverage change, specific to place. The contributions from across the globe demonstrate the opportunities for international comparison and learning from each other. Some countries have been direct about adopting the language of human rights or government obligations under the UNCRPD. In other countries that have been slower to take up these opportunities, disability organizations and non-government actors have still been able to ride on the international momentum. Some of the chapters emphasize the role and policies of non-state actors at local levels as ways to stimulate practical change by people with disability.

826  Research handbook on disability policy The chapters point to future possibilities for the influence of human rights concepts and the UNCRPD. As country reports emerge from the processes of the UN Committee on the Rights of Persons with Disabilities (www​.ohchr​.org/​en/​treaty​-bodies/​crpd), further opportunities for change are evident, informed by comparative analysis of the government and non-government reports from these processes.

INTERSECTIONALITY AND EQUITY The intersectional lens adopted in the book highlights the multiple dimensions of disability experiences. Many of the chapters approach intersectional questions raised by disability, policy and intersectional identities of age, gender, sexuality, class and race. Intersectionality points to the ways that social categories interact and co-constitute each other to create identities and positionalities that vary according to place and time (Hankivksy et al., 2014; Stubbs, 2015). The collective effect of intersectional identities can create disadvantage and inequity, which policy must address if people’s rights are to be realized. In policy analysis, intersectionality helps to understand inequality across social domains at the micro, meso and macro levels, and different parts of identity, representation and structure. Intersectionality is particularly important for understanding how people targeted by policy intended to promote their rights, and actually experience, imagine and reimagine spaces that allow them to negotiate the terms of their own fulfilling life (Hankivsky & Jordan-Zachery, 2019). The contributions in the book raise questions about individualization in the social context, interdependence, interconnectedness and relationality in Part I. Contributions in Part II further examine the intersectional experiences of people seeking to improve their welfare and wellbeing, including the experiences of the disabled body in place and in relation to other bodies; and critical understandings of inclusive language to express the cultural specificity of disability policy experiences of welfare, rights and independence and interdependence. These intersectional questions have implications for how the state positions and responds to the diverse experiences of people with disability in policy with goals for welfare, health and economic inclusion. They also have implications for priorities of the wider social and economic systems of each country, including civil rights, anti-discrimination and accessibility, social protection, universality of entitlements and labour market integration to address the complexity of support and benefit systems for employment. Again, the global perspectives of the contributions illustrate the importance of avoiding reductionist concepts of the experiences of people with disability across time, place and intersectionality.

GAPS BETWEEN POLICY, IMPLEMENTATION AND LIVED EXPERIENCE The fourth theme to emerge from the contributions is the gap between policy goals and lived experiences. The gap is most stark around the implementation of policies to fulfil state commitments to UNCRPD obligations, which realize people’s human rights, especially the progressive social and economic rights of people with disability. The impact on people with

Conclusion on disability policy  827 disability of these gaps is evident in the narrative contributions, which bring to life the inequity of people’s experiences when policies to realize human rights remain aspirational only. Particularly interesting to observe from the contributions is the similar ways that people with disability across countries are forcing change not only to the policy, but also towards effective implementation. Their use of the concepts and language of human rights mobilizes solidarity with other rights movements within a country and across similar countries. This mobilization is an example of the strength of adding an intersectional lens to the experiences of human rights, whereby other social movements use the same concepts to force governments to act on shared goals (Kayess et al., 2014). The formal structures of the UN Committee on the Rights of Persons with Disabilities also assist in this advocacy, through the mechanism of Shadow Reports from non-state parties, which often highlight the gap between policies and implementation. The contributions shed light on how the human rights framework has informed changes to policies to address these implementation gaps. They also show how countries are adapting policies towards a human rights approach. Other contributions demonstrate how human rights are or are not reflected in policy and law, and often the implementation of these policies and laws continues to compromise the rights of people with disability. The lived experience portrayed in the contributions often falls short of equality, equity and entitlement. Importantly, the contributions also point to the limitations of human rights approaches to disability policy, either as framed by the UNCRPD or wider concepts of rights, and question the applicability for some people, purposes or places. A benefit of the range of country contributions is that they demonstrate some responses to the limitations that are place and history specific.

INNOVATION FROM DIVERSITY CONTRIBUTIONS AND RESPONSES The positive examples of policy processes found that human rights are influencing the way that policy implementation responds to the needs of people with disability. Two responsive changes are a more inclusive approach to policy, rather than segregation; and strengths-based approaches, building from the contributions of people with disability. Policy implementation that reflects these changes requires governments to apply an equity lens so that people with disability do not face the social barriers that constrain their participation. At best, policies with an equity approach generate new opportunities that fulfil the rights of people with disability and benefit the broader society from their diverse contributions, illustrated in some of the economic inclusion contributions. Contributors highlighted the potential that disability policy holds when it incorporates strengths-based or similar approaches, such as an affirmative model of disability (Flynn, 2022). A common theme was that a positive understanding of disability, and policy built around the strengths of disability, has great potential to stimulate innovation by taking advantage of the diverse perspectives and contributions of people with disability. This approach goes beyond the social model of disability, and finds parallels in the chapters that speak of the active participation of people with disability. Applying human rights to a welfare, health and economics lens also demonstrated that advocacy for policy change often benefits from evidence that supports multiple arguments for change. For example, the economic inclusion section of the book illustrated the benefit from

828  Research handbook on disability policy combining human rights and economic arguments for policy change. A policy such as promoting entrepreneurship not only has the potential to fulfil rights to work and economic security, but can also stimulate innovation and productivity.

INCLUSIVE PRACTICES IN POLICY AND RESEARCH Expertise from the lived experience of people with disability is foundational to this handbook and demonstrates the wider benefits of inclusion and leadership from people with disability in policy and research. The narratives are personal insights into the ways that disability policy affects people’s lives, and how people navigate and influence policy in a myriad of ways. These reflections offer accessible pathways into and bridges between the chapters. Many of the chapter authors and contributors also apply their lived experience of disability, along with participatory and inclusive research methods, to their analysis of policy theory and implementation. This rich blend of lived experience and academic method has resulted in new perspectives about policy theory. The perspectives are strongly informed by and grounded in the experiences and priorities of people who have experienced the policy forces and conditions about which the authors write (Arstein-Kerslake et al., 2020; Grech & Soldatic, 2016; Nind, 2017). The new conversations opened by drawing together the experiences of people with disability in narratives and academic chapters are important for progressing policy change. They show how contributions at multiple layers enrich dialogue on complex issues, such as access to human rights, activating the right to good health, or improving employment opportunities. Inclusive methods are both a way of learning from people with disability, and a new way of approaching the policy realization of human rights. Policy makers and researchers need to learn from this process and replicate it in policy and research endeavours.

FUTURE OF DISABILITY POLICY The last theme from the contributions is about the future of disability policy. There are many policy areas which remain in need of priority attention. Two areas that warrant further examination in disability policy scholarship are the urgent problems of the impact of climate change and changes to the environment on people with disability, and the potential of technology and design for furthering the rights of people with disability (Goggin, 2008). These policy areas once again highlight the scale of opportunity for progress, and global inequities from exploitation and access to resources (Grech & Soldatic, 2016). Preventive measures to avoid the predicted unequal impact of environmental change have particularly urgent implications for people with disability (Villeneuve et al., 2021). Yet this book demonstrates the benefits of addressing these rights from an interdisciplinary, cross-cultural perspective that draws from positive experiences and collaboration globally. We hope the collective contribution of this book opens further dialogue in different spaces about the potential of disability policy and its analysis to progress the rights of people with disability. The book takes the broad approach that disability policy can be inclusive of all policy because the human rights of people with disability extend across all domains and the concept of disability is due to socially exclusionary practices across society. This somewhat tautological

Conclusion on disability policy  829 position risks making an examination of disability policy a meaningless endeavour. However, the principle of the claim is that unless the rights of people with disability are addressed in all policy domains, people will continue to be excluded. Learning from the experiences of policy reform and implementation that build from the strengths and contribution of people with disability has the potential to improve the rights of people with disability worldwide.

REFERENCES Arstein-Kerslake, A., Maker, Y., Flynn, E., Ward, O., Bell, R. & Degener, T. (2020). Introducing a human rights-based disability research methodology. Human Rights Law Review, 20(3), 412–432. https://doi.org/10.1093/hrlr/ngaa021 ​ ​ ​ ​ ​ ​ Flynn, S. (2022). Critical disability studies and the affirmative non-tragedy model: Presenting a theoretical frame for disability and child protection. Disability & Society. doi:10.1080/09687599.2022.207 0061 Goggin, G. (2008). Innovation and disability. Media/Culture Journal, 11(3). doi.org/10.5204/mcj.56 ​ ​ ​ ​ ​ Grech, S. & Soldatic, K. (2016). Disability in the Global South: The Critical Handbook. Springer. Hankivsky, O. & Jordan-Zachery, J.S. (eds) (2019). The Palgrave Handbook of Intersectionality in Public Policy. Palgrave Macmillan. Hankivsky, O., Grace, D., Hunting, G., Giesbrecht, M., Franklin, A., Redrum, S., Ferlette, O. & Clark, N. (2014). An intersectionality-based policy analysis framework: Critical reflections on a methodology for advancing equity. International Journal for Equity in Health, 13, art. 119. https://doi.org/10.1186/ ​ ​ ​ ​ ​ s12939-014-0119-x ​ ​ ​ Kayess, R. & French, P. (2008). Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities. Human Rights Law Review, 8(1), 1–34. Kayess, R., Sands, T. & Fisher, K.R. (2014). International power and local action: Implications for the intersectionality of the rights of women with disability. Australian Journal of Public Administration, 73(3), 383–396. Nind, M. (2017). The practical wisdom of inclusive research. Qualitative Research, 17(3), 278–288. doi:10.1177/1468794117708123 Stubbs, J. (2015). Gendered violence, intersectionalities and resisting gender neutrality. Oñati Socio-Legal Series, 5(6), 1433–1451. Villeneuve, M., Abson, L., Pertiwi, P. & Moss, M. (2021). Applying a person-centred capability framework to inform targeted action on Disability Inclusive Disaster Risk Reduction. International Journal of Disaster Risk Reduction, 52, 101979.

Index

5P framework  808 12-step disability inclusion model  820 12-step model  815 15-member National Disability Board  678 1920 Vocational Rehabilitation Act  347 1998 Local Government Act  136 2030 Development Agenda for Sustainable Development  11 AAAQ (Availability, Accessibility, Acceptability and Quality)  617 AACs  818–19 ableism  52, 65–6, 131, 303, 654, 656, 658–60, 664–5 ableist  366, 370 Aboriginal  402–3, 405–9, 411 abuse  667 academic neutrality  38 academic researcher  42 accelerated prenatal genetic technologies  600 acceptability  71 access definition  392 access intimacy  53, 54 access model/s  392–3 access to inclusion  152, 153, 154, 155, 157 accessibility  69, 71, 105–12, 452–7, 459–62, 464–5 accessibility bill  218 Accessibility Code  158 Accessibility Commissioner  219, 223–4 Accessibility Committee  56 Accessibility for Ontarians with Disabilities Act (AODA)  795 accessibility, law of  55 accessibility policies  61 in Brazil   49 Accessible Canada Act (ACA)  217–26, 229–30, 756 disability rights  226 impacts  226 impressions  228 regulations  224 substantive elements  226 symbolic meanings  228 textual language  228 vision of  228

accessible public transit system  166 accessible spaces  694, 697, 699 accessible taxis  175 accessible transportation  179 accessible vans  175 accommodation  768 accountability  572 activism  147, 217, 218, 219, 220, 229, 230, 694 adaptability  71 administrative system  170 Advisory Council on the Disabled  157 advocacy  16, 305–6, 309, 312–14, 317, 324 emerging  314 engaged  315–17 affection  251 affirmative action scheme  427, 428 affirmative model  758, 766 Affordable Care Act  357, 555 affordable transportation  173 Africa  674, 675, 679 African Charter  258 Ageing family group home  479 Agency for Development Cooperation (AICS)  30 Agenda for Sustainable Development  721 Agrarian Reform  502 Aichele, V.  234 Air Carrier Access Act (1986)  350 Albala  813 ‘alien’  303 ameliorative programme  796 American disability policymaking  346 Americans with Disabilities Act (ADA)  220, 228, 694, 697 American welfare state  347 amyotrophic lateral sclerosis (ALS)  569 Anderson, J. G.  792 Andrews, E. E.  604 Andrich, R.  819 Anthropology of Disability  56 anti-discrimination  3, 189, 405 anti-Marxism  501 Anttonen, A.  792 Aotearoa New Zealand  85, 87, 91–4, 96–7 appreciative inquiry (AI)  96 Architectural Barriers Act  349 Architecture as a System Scavengers, Tribes, Warlords and Megafirms  272

830

Index  831

Aristotle  805 Article 9 CRPD  105 Article 19  274–5, 278–85 Article 21 CRPD  105, 112 Article 21(e) CRPD  105 Article 24 CRPD  105 Article 30 CRPD  102,–3, 105–8, 112–15 Article 33  85, 87, 89, 90–91 Article 33 CRPD implementation mechanism  237 monitoring mechanism  237, 239 Article 34  88 Article 35  89 Article 36  89 asexuality 655, 657, 664, 665 Assistive Devices programme  798 assistive products (APs)  807 Assistive Tech Impact Fund  818 assistive technologies (ATs)  615–16, 618 implementation of   623 use of   620 assistive technology (AT)  615–16, 625, 807, 910, 813–14, 816, 820 Assistive Technology Assessment (ATA)  816 Assistive Technology Capacity Assessment (ATA-C)  816–17 Assistive Technology Centers (ATC)  809 Assistive Technology Impact Assessment tool (ATA-I)  816 assistive technology provision  819 Association of Technical Standards (ABNT)  55 asylum-seeking  305, 307, 318 AT actors  817 AT assessments  814 AT indicators  816 AT innovation  818 AT innovation dynamics  813 AT service delivery  811 AT service delivery system  809–10 AT2030  817, 820 AT2030 program  808, 813, 815 ATCs  810 ational policy  310 attitudes  696, 805–6 Auslan educator  419 austerity  677 Australia  323, 402, 420, 655, 657, 663, 706, 717, 721, 722, 726, 727 Australian Bureau of Statistics  308, 404 Australian Commonwealth Ombudsman  314 Australian Disability Standards for Education  408 Australian Federation of Disability Organisations  733

Australian Health and Physical Education  661 Australian Human Rights Commission (AHRC) 722, 734 Australian Human Rights Commission 2016 report  731 Australian labour market  724 Australian National Disability Insurance Scheme  330 Australian National University  409 Australian policy context  291 Australian policymakers  332 Australian universities  403 Australian University Policies  408 Australia’s Disability Discrimination Act  730 Australia’s Disability Employment Strategy  731 Australia’s Disability Strategy  540 Australia’s Disability Strategy 2021–2031  455 authenticity  763 autism  233 autonomy  69, 195, 361–71 availability  71 Avery, S.  404–5 Ayling, P.  3 Aylwin, Patricio  504 Bacelar, Alice Rosa  254 Bachelet, Michelle  505 Bahner, J.  300, 655 Bahner, Julia  290 Bailie, Dr Harry  542 Banks, L. M.  137 Bantekas, I.  105, 108 Barcham, L.  678 Barnes, C.  17, 21 Barr, N.  390 barrier-free Canada  222 basic income  789, 797, 798, 800, 801, 802, 803 basic income schemes  797 Batavia, A.I.  228 Baum, D.  641 Beckett, A.  87, 88 Beckett, A. E.  422, 565 Beirut  119 bembera  673 Benhabib, S.  790 Bennett, B.  617 Benoot  270 Beresford  708 Beresford, P.  445 Berghs, M.  5, 261 Berne  678 Berne, P.  50–51, 673 Best, M.  143 Bickenbach  694

832  Research handbook on disability policy

Bickenbach, J.  3 Bickenbach, J. E.  792, 793 Biden  357 ‘Big Society’  364 Blmosjö, I.  574 Boal, A.  17–18 Board of Education of the Hendrick Hudson Central School District v. Amy Rowley (1982)  377 Böck, G. L. K.  53, 59 Bofu harimemi hunza  674 Booker, Corey  357 Boonen, M. 13 Booyens, M.  137, 138 boundaryless career theory  759 Bourdieu, P.  54, 62 Bowker, G. C.  383–4 Bowlby, S.  697 Bowman-Smart, H.  601 Boyce, S.  445, 446 Boys, J.  459 Braidotti, R.  365 Brandon, D.  446 Brazil  49, 247 Brazilian Constitution  62 Brazilian Law on the Inclusion of People with Disabilities (BLI)  49 Brazilian Technical Standard  62 Bringolf, J.  460 Bristol, G.  458 Broderick, A.  154 Brookes, N.  365 Brown, J.  569 Brown v. Board of Education (1954)  374 Buchanan, James M.  503 Building Code of Australia (BCA)  466 built environment  452–65 Built Environment and Policy Environment  464 Bundon, A.  143 Burns, N.  305, 310 Burris, M. A.  367 Bush, George H.W.  352 Bush, George W.  357 business case  159 Busuttil, N.  310 Butler, J.  52, 143, 144 Butler, R.  697 CA approach  393, 394 CA model  393 Caldwell, J.  330 Caleb-Solly, P.  628 Cameron, D.  266 Campbell, A. L.  354

Campbell, F.  52, 53 Canada  220, 759, 796 Canada Child Benefit  797 Canada Disability Benefit program  806 Canada Pension Plan–Disability (CPP–D) programme  794 Canada Recovery Benefit (CRB)  796 Canadian Accessibility Standards Development Organization (CASDO)  224 Canadian Charter  219 Canadian Charter of Rights and Freedoms  223 Canadian Emergency Response Benefit (CERB)  796 Canadian federation  226 Canadian government  227 Canadian House of Commons  218 Canadian Human Rights Act  223 capability  493 capability approach  392, 558 capacity building supports  333 capital supports  333 Caplan, A. L.  609 care  274–6, 280–81 Care Act (2014)  446 care and support  275, 277, 369 care in the community  275 care robots  615, 621, 627 career success  756–9, 762, 764–7, 769 caregivers  678 Carey, G.  445 Carlson, A.  541 Carol’s story  294 CASEN  506, 507 cash-like benefits  398 Castro, Gomez-Carrillo de  13 CCPR G. C 18  423 Center for Disability Studies  57 Center for Disease Control and Prevention  391 centralization  361 CESCR G. C 5  424 Chambers, R.  19 Chan, K.C.N.  697 Chang  271 Charcot, JM  541 Charcot-Marie Tooth  541 Charles  147 Charmaz  761 Charter of Fundamental Rights of the European Union  189–90 Chataika, T.  261 Chen, S. C.  608 Chenoweth, L.  544

Index  833

Chief Accessibility Officer  225 Children and Families Act  638–9 Children and Young People with Disability Australia (CYDA)  707–8 Children’s Health Insurance Program  593 Chile  501 state of  502 subsidiary state  501 welfare state  502 Chirema ndochine zano, chinotamba chakasendama kumadziro  675 Chiu, C.  151, 161 Chiu, T. H.  478 Chloe’s law  609 choice 283, 806 Chouinard, V.  152 Chou, Y.  474, 475, 479 Christie, N.  266 Cieza, A.  793 Cinderella  108, 113–14 citizen  361 citizen mobilization  355 citizens  180 citizenship  196, 493 civil-military dictatorship  503 civil rights  348–9, 350–3, 355–7 Civil Rights Act  349 Civil Rights Act (1964)  354 civil society  89, 235, 239 civil society monitoring  95, 97 Clancy, L.  570, 571, 575 Clare, E.  50 Clean Air Act  355 clientelism  121 clientelist approach  123 climate change  389 Clinton administration  357 Cockburn, C.  266 co-creative approaches  35 Code on Barrier-Free Accessibility in Buildings  158 co-design 22, 316, 317 Coercive forces  378 collective access  49–54, 57–61 colonialism  259 Commission Regulation  199 Committee  280–81 Committee on Economic, Social and Cultural Rights (CESCR)  552 Committee on the Rights of Persons with Disabilities  89, 361, 460 communal autonomy  126 communal governance  126 communication  569–72, 574–9

Community Advisory Groups  316 community-based care  346 community-based EDR (CB-EDR)  21, 25, 29, 30 case studies  23 community  28 individual  28 in India  25–6 in Liberia  26–7 in Mongolia  25, 27 in Mozambique  25 in Palestine  25, 27 institutions  28 processes  23, 25 qualitative participatory assessments of  27 toolboxes  25 community based participatory research (CBPR)  36 community-based rehabilitation  126 Community Charter of the Fundamental Social Rights of Workers  191 community governance  126 community groups  218 community integration  674 community living  470, 472–6, 478–82 Taiwan  470 community tourists  304 Compendium of the Social Doctrine of the Catholic Church (CSDC)  501 Complex Adaptive Sub/Systems (CAS/Ss)  457 complex rehabilitation technology  590 comprehensive sexuality education (CSE)  655 Compulsory Education Act  156 CONADIS  240 Concluding Observations (COs)  103 congenital disability  759 congenital physical disability  662 Constitution of Uganda 425 art. 30  423 Constitution of Zimbabwe  262 consumerist models  818 Contemporary Complexity Theory  457 contemporary sexuality education  663 ‘Convention Coalition’  91 Convention on the Rights of Persons with Disabilities (CRPD)  17, 20–21, 25, 28–9, 33–4, 36, 38, 42–5, 49, 67–8, 100–101, 153, 202, 234, 247, 258, 261, 390–91, 394–7, 403, 429, 470–71, 473–4, 478, 480–82, 502, 505–6, 510–12, 544–7, 557, 682, 688, 694–6, 698, 703, 708, 717, 741, 773, 777, 784, 798 Article 1  307 Article 2  423–4, 431 Article 5  178

834  Research handbook on disability policy

Article 9  167–8, 694 Article 19  470, 472, 474 Article 21  311 Article 24  423, 425, 431 Article 25  390 Article 26  390 Article 27  390 Article 28  390 Article 33  234–7, 239, 243, 246 framework  315 disabled persons in  177 G. C. 6  424 G.C 6  423 G. C 6, 24b  424 G. C 6, 25 c  424 G.C 6 in par. 14–par. 29  423 G. C 6 par. 18  424 G. C 6, par. 25  424 G. C 6, par. 25b  424 goal of  29 human rights model of disability  176 implementation of  173 legal framework  239 legal standing of  236 ratification  202 Second State Report  175 Taiwan  470 Convention on the Rights of Children (CRC)  545 conversion factors  393 co-production  45 co-research  634 co-researcher agreement  43 co-responsibility  503 core supports  332 Coronavirus Act  640 Cortell, A. P.  470 COs  114 cost-benefit analysis (CBA)  688–9, 812, 814 cost-effectiveness analysis  812 cost-effectiveness approach  689 cost-efficiency  689 cost-utility analysis  812 Council Decision  191 Council of Federal Accessibility Agencies  227 Country Capacity Assessment (CCA)  817 country-specific culture and policies  604 Court Challenges Program  219 covid 19  44 Covid-19 44, 93, 118, 233, 675, 709–11, 716, 722, 724–5, 734 CPP-D  794 CRC  545 Crenshaw, K.  52 Critical Disability Studies (CDS)  789

Crock, M.  315 cross-movement solidarity  126, 130 ‘CRPD and its Human Rights Indicators’  168 CRPD Committee  106–7, 110–14, 239, 242–4, 246, 279, 281–2, 285 CSE frameworks  663 CSE policies  663 cultural policies  108, 113–14 Cuomo, A.  346 CYDA  708 Daming, S.  210 Dangerous Drug Act (DDA)  670 Daniels-Mayes, S.  270, 402, 404–7, 410, 413 Danish report  110 DAP Murdoch University  410 University of Queensland  412 University of Technology Sydney  410 Dasen, V.  695 data  93 triangulation of  70 data analysis  379, 761 data analysis strategy  379 data collection  759 data limitations  507 David, C.  340 Davies, A.W.J.  663 Davis, J. W.  470 Davis, L.  692 Davis, L.J.  693, 695 Davis, S. L. M.  556 DAWN  627 de Beco, G.  234, 236, 262 de Londras, F.  553 Deaf people  55 D/deaf person  178 DDF communication with community members  142 with district officials  146 with Traditional Authorities  144 deadweight  785 decentralization  135 decision-making  716, 756–7 Deets, S.  125–6 Degener, T.  106–7, 152, 205, 256, 695 de-institutionalization 348, 470–75, 477–8, 480–81 Deloitte Access Economics  726 Department of Social Welfare  25 Depoy, E.  486 Desa Inklusi  494 designated happy  469 Destroying the Joint (DTJ)  667

Index  835

detention  307, 309–10, 313–17 Devandas Aguilar, Catalina  283–4 Devlieger, P. J.  258, 674–5 Dew, A.  311 difabel  205, 486, 493 difabel citizenship  486, 493–7 different ability  206, 210, 213 digital accessibility  158, 818 Digital Readiness Blueprint  158 digital space  819 dignity  69, 109, 304, 322 Diller, M.  285 DiMaggio, P. J.  377 direct payments (DP)  437, 440, 444, 447–8 disabilities  389–90, 687, 756–9, 761, 763–8, 805, 819 capability approach  392 disaster  397, 399 disaster risk  389, 392, 395, 398 people with  36, 421 physical impacts  539 social inclusion  399 social model of  422 social protection  394, 399 welfare state  389 disability  15, 17, 18–21, 23, 25, 28–9, 203, 207, 274, 390–91, 425, 581–2, 654, 674, 677, 694, 713, 721, 757, 762–3, 772, 811 activism  217 Acts of Parliament on Disability  425 advocacy  338 and human rights  219, 583 and social policy  33 as a human rights issue  85 assistance and support  274 attitudes towards  603 biomedical approach  28 ‘business case’ for  159 community  38, 218, 584 conceptualization of  439 data collection  208 deficit-oriented approaches to  335 definition  393 ‘gold standard’ of  139 human rights approach to  166 human rights model of  88, 421, 422, 588 identity  330 inclusive development  491 in Malawi  137 interactional model of  20 justice critiques  606 literature  486 magical nature of  137 mainstreaming  261

medical model of  86, 203, 204, 404, 533, 539 medical models of  440 medicalisation of  539 models of  86, 587 movement  218, 438, 568 narratives of  338, 339 policy  615 resistance  543 rights  543 self-advocacy   338 social and human rights approach  28 social model of  20, 86, 121, 190, 204–5, 425, 439, 452, 533, 539, 547 social relational model of  569 transformative equality for  421, 422 weights  556 welfare approach to  497 Disability Act  135–7 Disability Action Plans (DAPs)  409 disability activism  766 disability activists  127, 129 disability-adjusted life years (DALYs)  545, 556, 558, 812 Disability Advocacy Research  42 disability arts movement  766 disability awareness  178 Disability Card  122 disability citizenship  493 disability community  40 Disability Council  243 disability culture  106 Disability Data Report 2021  68 Disability Discrimination Act  151, 697 Disability District Forums (DDFs)  137 disability employment gaps  687 disability employment policy  684, 729 Disability Employment Services (DES)  722, 725 Disability Employment Strategy  730 disability gap  68 disability hierarchies  693 disability identity  106 disability imagery  703 disability inclusion  428, 433 in ICT  433 Disability Inclusion Group  410 Disability Integration Act  357 disability justice  49, 50–53, 57, 61, 673, 678, 815 collective access   53 disability, language of  402 Disability Living Allowance data  438 disability mainstreaming  485–97 challenges to   489 difabel citizenship  493

836  Research handbook on disability policy

implementation issues  490 legitimacy  495 obligations  495 paradigmatic issues  489 recognition  495 rights  495 disability models  203 disability movement  120, 123–31 disability policy  1–2, 121–2, 196, 213, 238, 242, 330–31, 341, 354, 374, 389, 394, 397–9, 529–30, 533, 758, 789, 791, 793, 804, 823, 825–8 agenda  352 development of  356 diverse conceptual approaches to  1 economic inclusion  5 effect of  183 health  4 human right  2 in India  517 language  8 medical model  2 policy context  7 recommendations  317 social model  2 United States  346 welfare  3 disability policy reform  128 disability poverty gap  688 disability-related productivity  766 disability representation  65, 66 disability reproductive justice  658 disability rights  118–19, 128, 183–4, 188, 207, 217, 220–21, 225–6, 228–30, 374, 438–9, 440–41, 444, 448, 544, 546, 678, 681 policy framework of  191 disability rights activation  125 disability rights activists  204 Disability Rights and Education Defense Fund  356 Disability rights and robotics  534, 632 disability rights discourse  187–91 disability rights movement  123, 422, 448, 694 birth of  123 multi-layered crises  124 Disability Rights Promotion International (DRPI)  36, 68, 90 individual  69 monitoring project  69 societal  69 systemic  69 Disability Royal Commission  411 disability scholarship  798 disability service teams  569

disability services  474 Disability Services Act  544 disability stereotypes  696 ‘Disability Studies anti-ableism and social emancipation’  59 disability support centre (DSC)  429 Disability Support Pension  724 Disability Support Services (DSS)  94 disability tax  714 disabled  469 disabled children  637 disabled children’s childhood studies (DCCS)  638 disabled entrepreneurs  781 Disabled in Action  350 disabled people  65, 94 choice  277 Disabled People’s Association’s (DPA)  151 Disabled Peoples International (Australia) organisation  544 disabled people’s organisations (DPOs)   26, 27, 85, 135, 239, 256, 259, 470 disabled person-led monitoring  92 disabled sexuality  655, 657, 662 disabled students  421–5, 427–34 equality  421 non-discrimination of  421 disablism  118, 122–3, 131, 654–5, 660 disaster risk  389, 391, 392, 399 access models of  391 impact  395 pressure  391 release  391 disaster/s  389–99 disasters policy  398 discount  170 discourse  636 discrimination  101, 555 district collaborative meeting  380 District Disability Forums (DDFs)  136, 138, 141 raising awareness   142 divergences  107 diversity  827 doctrinal legal method  203 ‘Doing Gender’  59 Dolmage, J.  694, 699 domestic civil society  471 Donald Beasley Institute (DBI)  92 Dong-Ming Love Support Group Home  479 Donne, John  233 Donnelly, J.  257, 258, 261 Donnelly, M.  412 double aging society  479 double discrimination  404

Index  837

double track control  89 Doug Ford  799 Down Syndrome Prenatal Education Act (2014)  608 Down Syndrome Screening (DSS)  605 Doyle, S.  280 DPO Coalition  92 DRPI methodology  96 Dube, K.  261 Dubner, S.J.  686 Dudley, Ron Chandran  155 Duffy, S.  797 duty-bearers  453, 456–65 duty of fulfillment  5 duty of guarantee  5 duty of prevention  5 duty to protect  5 EAHCA  380 East Asia  741 EASTIN (European Assistive Technology Information Network)  619 ECJ  197 ecological systems approach  622 economic empowerment  264 economic evaluations  812 economic inclusion  5, 6, 682 economic modelling  726 economic theory  686 economic well-being  689 economics  682, 686 EDR  29 education  183, 418–19, 420 Educational Accessibility Coordination  58 educational spaces  662 Education for All Handicapped Children Act (EAHCA)  374 Education Standards Agency  425 education technology  820 Edwards, S.  672 Eide, A. H.  138 El Salvador  243 Elder-Woodward, J.  797 El-Lahib, Y.  261 Elliott, Alex  270 emancipation  251 emancipatory disability research (EDR)  17–18 analyse and scrutinise research  22 design and organise training  22 development of  19 fundamental flexibility of  20 general evolution  18 identify supporting mechanisms  22 implementing community-based  21

operative group(s)  22 planning  21–2 process  21, 23 toolbox  22 emancipatory research  18–20, 22, 36 Emong, P.  424 emotional labour  707 empathy  763 employment  184, 346,–8, 350–51, 353–4, 683, 687, 721–38, 773 Employment Act  159 Employment Equity Act  219 employment gap  774 employment interventions  732 employment opportunities  828 employment outcomes  722 employment rates  706 employment services  725 employment system  708 empowerment  17, 20–21, 23, 27–9, 575, 780, 784 ‘Enabling Business Hubs’  160 enforcement  153 England  637 Englehart  146 English as a Second Language (ESL)  380 enterprise culture  371 entrepreneurship  773, 776, 781, 784 epistemic silence  556 equal opportunities  194, 195 Equal Treatment Directive  194 equality  322 Equality Act  698, 699 Equality Act (2010)  438, 566 equity  823–4, 826–7, 829 ESL issue  381–4 Esmail, S.  660 Esping-Andersen, G.  393, 593 Essex, R.  310 Estonian report  110–12 ethical engagement  638 ethical issues  622 ethnographic moment  379 EU Disability Law  187 Eucalyptus oil  675 eugenic policies  805 EuropeAid  30 European Blind Union  112 European Commission  194 European Convention on Human Rights (ECHR)  197, 566 European Court of Justice (ECJ)  189 European Disability Strategy  192–3, 195 European Disability Strategy 2010-2020

838  Research handbook on disability policy

A Renewed Commitment to a Barrier-Free Europe  193 European Economic Community (EEC)  188, 191, 197 European Middle Ages  540 European Pain Federation (EFIC)  672 European Parliament  199 European Pillar of Social Rights  194 European Social Charter  198 European Social Inclusion Strategy  190 European Union (EU)  196 citizens  188 definition of ‘disability’  196 disability rights discourse  187 framework  186, 187, 196 legislation  197 rights  195 European welfare state  361 Evaluation Gap Working Group  779 exclusion  653, 655–7, 663 Expanded Chronic Care Model  504 experience sexuality  289 experiential knowledge  33 explicit discrimination  560 expressivist objection  607 facilitated communication (FC)  233 fair procedure  551, 555, 557–60 Fair Work Act  730 Fakih, Mansour  206 family care-givers  276 Fearnley, N.  703 federal disability policy  356 federal government  218 federal government policy  408 Federal University of Santa Catarina (UFSC)  57 Federation of Disability Organizations in Malawi (FEDOMA)  135–6, 138–9, 140, 142, 146–8 voice   138 Federing, D.  694 feminism  668 feminist disability studies  59 Ferrie, J.  567 Fiala-Butora, János  282 Film Promotion Act  110 financial inclusion  776, 781 financial security  684 Financing Healthcare  811 Fineman, M. A.  568 Finger, A.  657 Finkelstein, V.  204, 439 Fleming, M. J.  407 Flemish

‘Persoonsvolgende financiering’  364 Flemish Government  364 Flemish policy  364–5 Flemish PVF  371 Flyvbjerg, B.  34, 35 ‘food-for-work’  676 formal sex education  660 Foucault  88 Frawley  269 freedom of choice  806 Freehand System  590 Freeman, M.  545 Freire, Paulo  17–19 French, P.  261 Freyer, B.  310 Friedman, Milton  503 Fritsch, K.  696, 697, 698 funding  330, 332–3, 335–6, 338–9, 341–2 Gan Kim Yong  155 Gartner, A.  375 Gary, M. Z.  796 GATE initiative  808 GDI Accelerate ecosystem  817 GDP  812 Geha, C.  130 gender  724 General Comment/s  279, 280, 282–4, 292, 300 General Law of Sanitation Services  512 Geneva Switzerland  672 genomics  590 Gesser, Marivete  57 Giddens, A.  136, 144 Gillick, C.A.  697 Gill, M.  654, 658 Gill, Michael  289, 293 Gilroy, J.  412 Gilson, S.  486 Ginn, H.  300 Ginsberg, Alan  269 Given, D.  446 Global Burden of Disease project  616 Global Collaboration on Assistive Technology (GATE)  807 Global Day Against Pain  672 global disability inclusion  815 Global Disability Summit  807 global health ecosystem  813 Global Housing Quality Index  508 global labour market  733 Global North  180, 204, 390, 437, 439, 440, 785, 789, 825 global perspectives  1 global policy  807

Index  839

global poverty alleviation policies  773, 775 global South  103, 256, 277, 390, 437–8, 447–8, 485–8, 493, 683, 773–7, 784–5, 825 Goh Chok Tong  155 Golan, D.  471 Goldman, A.  641 Gooding, Piers  284 Goodley, D.  365, 654, 661 Gothenburg Summit  194 governmentality  290 Grace, D. M.  407 Gramsci, Antonio  19 grassroots advocacy  141 Grech, S.  305 Green, M.  71 Green, R. J.  453 Griffis, Worimi man Damian  402 Groce, N.  774 Gross Domestic Product (GDP)  397, 503 Gross Enrolment Ratio (GER)  517 Grover  676 ‘gumbwa’ ceremony  673 Gupta, J.  487 Guterres  305 Guzmán, Jaime  501 Haang’andu, P.  135, 142, 145, 147 Hafner-Burton, E. M.  470, 480 Hagen, T.  703 hak dan kewajiban  495 Hammarberg, Thomas  280 Hamraie, A.  459, 692 handicapped  206–7, 209 Handicapped Act  202, 205–7, 210, 213 Handicapped Act of 1997  202 Handicapped Bill  205 Handicapped Persons Act 1971  137 hard and soft law instruments  196 Harkness, S.  675 Hashemi, G.  266 Hayek, Friedrich A.  503 health  4, 5 definition  533 Health and Disability Ethics Committee (HDEC)  95 Health and Disability Review Final Report  94 health care system  797 health innovations  812 health technology assessment (HTA) models  812 healthcare  565, 572, 669 healthcare policy  626 Healthcare Technology Innovation  811 healthcare technology sector  820 health-related expenditures  812

health-related quality of life (HRQoL)  551, 554–5 Hemingway and Priestley  389 HEPSN scheme  522, 528, 529 heteronormative ableist messaging  660 Heumann, Judy  350 heuristic devices  86 Hickey, S.  493 hierarchies of disability  691 hierarchy  696 higher education  421–6, 429–30, 434, 517, 520–25, 527–30 disability inclusion  422 transformative equality  422 higher educational institution (HEI)  426, 517 519, 524 Higher Education for Persons with Special Needs (HEPSN) scheme  517, 520 Hill, M.  602 historical approach  203 historical spatial separation  454 Hoefmans, A.  234, 236, 238 Hogan, A. J.  547 Hoggett, P.  792 Hollomotz, A.  659, 662 Home and Community Based Services  397 home-based care  678 homogeneity  525 Honneth, A.  371 Horner, R.  437 Hosie, A.  567 Hoskovec, J. M.  608 hospital  536, 538 House of Commons  219 House of Representatives  208–9 Household, Income and Labour Dynamics in Australia (HILDA) Survey  728 housing  501 Howard, C.  593 Howard, Ebenezer  454 Howl 269, 272 HRBA  811, 815, 819, 820 HTA  812 HTA models/systems  813 Huang, A.  472 Huang, S.  471 Huff, L.J.  693 human dignity  2, 106 human right model  113 human rights  1–4, 6–8, 11, 14, 34–6, 38, 44–5, 49, 51–, 54, 57, 60, 67, 119–20, 125–6, 128–31, 151–6, 160–62, 202–5, 207–12, 217, 218–23, 225–6, 228–30, 256, 278, 375, 402, 452–3, 455–62, 464–5, 517–18,

840  Research handbook on disability policy

523, 533, 545, 584–6, 588, 615–17, 619, 627–8, 654, 658, 663–5, 673, 679, 689, 694, 807, 823–8 Cinderella of  102 in Malawi  137 operationalising  565 principles of  588 Human Rights Act (HRA) 1998  566 human rights approach  485, 486 human rights-based access models  595 human rights based approaches (HRBAs)  456, 458, 552, 565, 576, 577, 807–8 human rights-based approach work  557 human rights-based models  595 Human Rights Based Participatory Research (HRBPR)  37–8, 41 human rights discourse  128 human rights framework  269 human rights literacy  594 human rights model  86–7, 166, 207, 256, 422, 470, 547 human rights model of disability  102–3, 105–7, 114, 166–7, 176, 179 human rights realisation  566 human right to science  584–9, 591–2, 594–5, 596 humanism  365 humanist  370 Humphrey, Hubert  349, 352 Humphreys, Robert  349 IASP  672 ICF  4, 547–8, 587–8 ICIDH  547 IDA  212 IDEA  381–4 identity  330–31, 335–6, 338–9, 340–42 identity management  756 impairment effects  569 Improving Disability Employment Study (IDES)  725 Imrie, R.  454, 692, 695, 699, 792 inclusion  69, 517, 686, 756, 764, 823 inclusive development  17, 485–91, 494, 496 inclusive research  34, 36, 37, 38, 40, 294, 298 income assistance programming  794 income security  806 Income Security Policy  221, 789 income security programmes  789–91, 797 income security system  794 income transfers  390, 398 indebtedness  784 independence  277, 347, 371 independent living  274, 276 approach  277

article 19 of CRPD  278 ‘choice’  283 concepts of  279 critique of  278 limitations and gaps in  277 limitations of  282 welfare and care-based approaches  279 welfare-based care  275, 276, 278 Independent Living and Inclusion in the Community  361 independent living movements  282 Independent Monitoring Mechanism (IMM)  91 India  517–21, 527, 529, 530 Indian higher education system  520 Indian Lunacy Act 1912  518 indicators  67 Indigenous Australian universities  411 Australian University Policies  408 data  404 dual status  404 limited voice for  410 siloing approach  408 universities  407 voice of  411 Indigenous people  402 indigenous theorization  256 indirect discrimination  560 individualized career development  732 Individualized Education Programs  183 individual out-of-pocket expenditure  819 individual purchasing power  819 Individuals with Disabilities Education Act (IDEA)  374–7 Indonesia  486, 489–97 Indonesian Department of Social Affairs (DOSA)  205 Indonesian development  485 Indonesian National Medium-Term Development Plan  490 Indonesians with Disability Act (IDA)  202, 207, 210, 213 Indonesians with Disability Bill (IDB)  202, 207 inequity  15 Ingstad, B.  138 innovation  812, 814, 817–18, 827 innovation agenda  412 Institute for Human Rights and Business (IHRB)  459 institutional care  275 institutionalization  124, 454 integrated care system  626 Integrated Education of Disabled Children (IEDC)  520

Index  841

integrating human rights law  565 integrative methods  812 intellectual disabilities  33–40, 42–45 intellectual disability  289, 293–4, 297, 299, 365, 367, 709 interactional model  20 interconnectedness  370–71 interdependency  371 International Association for the Study of Pain (IASP)  671 International Bill of Human Rights  154, 585 international civil society  471 International Classification of Diseases (ICD)  545 International Classification of Functioning, Disability and Health (ICF)  122, 173, 259, 390, 533, 539, 545–6, 552 International Classification of Impairments, Disabilities and Handicaps (ICIDH)  422, 546 International Covenant on Economic Social and Cultural Rights (ICESCR)  102 international disability policy  220 international monitoring  89 International Monitoring Mechanism (IMM)  85 International NGOs (INGOs)  128 international organizations  127 International Pain Summit Steering Committee  672 International Rehabilitation Council for Torture Victims  306 International Review Committee  474 international rights treaties impact of  472 International Statistical Classification of Diseases and Related Health Problems  541 International Symbol of Access (ISA)  697 intersectional discrimination  661 intersectional identities  826 intersectionality  52, 403, 405, 408, 410–12, 661, 663, 665, 826, 829 Ireland  617–19, 621, 625–8 Iriarte  677 Irish Inclusive Research Network (IRN)  34, 37 ISA  696, 698 Jackson, Andy  272 Jackson, M. A.  462 Jacques, O.  792 Jairos Jiri To Parent model  265 Jakubowicz, A.  107 Janet, Lord  167 Japan  741 Jawad  121

J.H. v Australia  112 John  271 Johnson, Kelley  293 justice  322 Kafer  661 Kao-hsiung  178 Karla Garcia Luiz  253 Katzman, E. R.  447 Kayess, R.  261, 471 Kenneally, K.  661, 663 Kenya  774, 775, 780, 783 Kenyan Status Report  775 Kesby, M.  140, 143, 144 Kilimanjaro Blind Trust Africa  819 Kim, H.  774 Kings, Martin Luther  350 Kinsella, E. A.  447 Kisanji, J.  674 Kitchin, R.  697, 700 Knight, A.  609 knowledge resources  145, 148 Kothari, J.  519 Krahn, G.L.  533 Kumar, M.  699 “kunatira Zumbani”  675 Kuomintang (KMT, Chinese Nationalist Party)  472 Kyambogo University Disability Support Centre  428 labor market  689, 707 Labor Organization  395 labour force participation rate  722 Labour Government (1997)  440 labour market  724, 731 labour market outcomes  706 LACs  337 Ladson-Billings, G.  138 Lagos, Ricardo  505 Lakkis  122 Landman, T.  71, 72 language  8 Laroche, Yazmine  756 Latin South and Central America (LSCA)  234, 235 law 220/2000  121 law-making  202 Law of the Convention on the Rights of Persons with Disabilities  474 Law, R.  700 Lawson, A.  87, 88, 422, 565 Lawthom, R.  365 Lawy, J. R.  143, 144, 146

842  Research handbook on disability policy

leadership  823 Lebanese disability movement  128 Lebanese disability policy  119 Lebanese Muslim Association  324 Lebanon  118–31 approach  120 disability movement   129 disability policy  121 disability policy reform  128 disability rights movement  123 non-sectarian social movements  126 Lebanon Civil War  122, 123 Lee Hsien Loong  151, 155 Lee, J.  160 legal authority  126 legality  576 Legislative conviction  377 Legislative Yuan  169, 173, 180 legitimacy  495 Levitt, S.D.  686 Lewis, D.  694 Lewis, Jerry  503 LGBTQIA+  292, 294, 295 liberal individualism  221 liberal welfare  593 liberalism  220, 221 Liddiard, K.  655, 656 life-course interviews (LCI)  25 life-limiting  636 life span career development theory  759 life-threatening  636 Lin, H.  474, 475 Lindqvist, Dr. Bengt  90 Lipsky, D. K.  375 Lists of Issues (LIs)  103 Lithuanian report  109 Little, Andrew  94 Liu, J.  438, 448 lived experiences  444, 826 livelihood  774–5, 778, 785 livelihood promotion  773–80, 78–5 livelihood promotion programmes  774 Living Safer Sexual Lives (LSSL)  293 Local Area Coordinator (LAC)  337 local education agencies  374 long-term care  618, 622, 628 long-term care system  622, 627 Lorenzo, T.  137 Lo, S. H.  478 low- and middle-income countries (LMICs)  808 LSCA CONADIS  243 context  244 implementation mechanisms in  241

monitoring mechanism in  245 LSCA States  240, 242, 246 Lundy L.  545 Luthuli, P. C.  673 Lysyk, Bonnie  799 Maastricht Treaty  196 Magee v. Coca-Cola  353 Maglajlic, R.  446 Maibaum, A.  627 mainstream technology  818 Maker  269 Malatest International  92 Malawi  135–40, 143–5, 147 Malawi Council for the Handicapped (MACOHA)  137 Malbon, E.  445 male-centric  277 Manca, L.  90, 234 Mandle, J.  229 Mankiw, N.G.   686 Manns, B.  632 Manns, S.  632 Mansuy, D.  501 Margaret, Sebastian  50 marginalised groups  469 marginalization  654 Markarere University Business School (MUBS)  429 market shaping  813 Marrakesh Treaty  108 Martial Law  179, 472 Martínez Amador, E.  112 Mass Rapid Transit  184 Mass Rapid Transport (MRT)  157 Mbiti, J.  257 McKay, Don  87 McKay, F. H.  310 medicaid  346 medical equipment  814 medicalisation history of  540 medical model  2, 12, 190, 204, 259, 274, 276, 524, 767 medical models  422, 547 medical stakeholders  592 Meekosha, H.  107, 261 Mello, A. G.  57, 60 Meltzer, A.  445 member checks  761 Member States  192 Memory Technology Resource Rooms  618 Menkiti, I. A.  257, 258 Mental Capacity Act  156

Index  843

Mental Disability Advocacy Center (MDAC)  237 Mental Health Act 1987  518 Merry, S. E.  471 metrics  558 Metzler, I.  540 Mexican manufacturing  815 Mexican Supreme Court  235 Meyers, S.  471 microcredits  782 microfinance  773, 776–7, 779, 781–4 Microfinance Institutions (MFIs)  777 Milani, Lorenzo  18 Milbern, Stacey  50 Miles, S.  310 militant capital  54 Military Board  503 Miller, H.  458 Miller, J.  609 Miller, M.K.  146 Mimetic forces  377, 378 Mingus, M.  50–51, 53 Ministry of Health and Welfare  473, 474, 477 Ministry of Housing and Urbanism (MINVU)  510 Ministry of Manpower (MOM)  160 Ministry of Social Affairs (MoSA)  123–4, 208, 211, 489, 490–92 Ministry of Social Development and Family  506 Ministry of Transportation and Communication  170, 173 minority cultural groups  437 Mirfin-Veitch  269 Mirza, Manza  311 mission approach  813 Mitra, S.  264, 774 Mkabela, N. Q.  673 Mladenov, T.  262, 369, 471 mobility rights  175 Mohan, G.  493 Money Follow Program  490 monitoring disability rights  68, 88 Mont, D.  774, 777 Moore, Leroy  50 moral management  454 morphine  669–70, 676–7, 679 Motor Neurone Disease (MND)  565, 570 Muccini, P.  53, 59 Mugumbate, J.  258–9 Mukuni, J.  672 multi-dimensional poverty  510, 775, 779 Multidimensional Poverty Index  779 municipalities  810 Murad, M.  270, 305–6, 312–13, 315, 322 Murithi, T.  673

Murove, M. F.  672 Murray, R.  234 Muslim  418, 419 Musoke, H. D.  428, 429, 434 Nakamura, L.  693 Nampewo, Z.  428–9, 434 National Commission on Disability (NCD)  211, 213 national context  618 National Council for Disabled Persons (NCDP)  123 National Council for Higher Education Board  425 National Council for Higher Education (NCHE)  426 National Council of Social Service  157 National Curriculum Development Centre  425 National Dementia Strategy  618 National Development Fund  773 National Disability Authority (NDA)  619 National Disability Commission (KND)  492 national disability institutions  234 National Disability Insurance Scheme (NDIS)  291, 309, 323, 330–31, 548, 684, 713–15, 726 application process  332–5, 339, 341 National Disability Mainstreaming Strategy  148 National Disability Policy (NDP)  256, 258, 260, 262–6 objectives  263 National Education System Act  210 national health systems  813 national healthcare policy  577 National Human Rights Institutions (NHRIs)  88, 212, 238 national legislation  136 national monitoring  89 National Organizations of Persons with Disabilities  426 National Performance Framework  566 national policy  573 National Policy for Persons with Disabilities  520 National Positive Aging Strategy  618 National Sample Survey of Households  174 National Socioeconomic Characterization Survey  506 National Spinal Cord Injury Association  394 National Union of Disabled Persons of Uganda (NUDIPU)  427 NCD  212 Ndaba, W. J.  258, 262 NDIS Participant Employment Strategy  730, 732 N. E. v. Seattle School District  354

844  Research handbook on disability policy

negative attitudes  676 neighbourhood  452 Nelson, L.  141 neoliberal-ableism  639 neo-liberalism 513, 676–7 Nettleton, S.  437 networks  126 neurodivergence  739–40 neurotechnology  584–5, 588–92, 595 New Deal  347 New Public Management  361 New Vitality Independent Living Association  184 New Zealand Disability Action Plan  292 New Zealand Disability Strategy (NZDS)  292 New Zealand Family Court  293 New Zealand Government  95 New Zealand Human Rights Commission  91 NGOs  471, 784 NHRIs  244 Niada-Avshalom. L.  556 Nixon, R.  348, 350 Noël, A.  792 non-discrimination  551, 555, 557–60, 574, 595 non-discrimination and equality  70 non-governmental organizations (NGOs)  471 nongovernmental regulation  608 noninvasive prenatal testing (NIPT)  600–601, 603 access  602 benefits  601 overview  601 termination of pregnancy  602 non-sectarian social movements  126 non-state actors  825 normalcy of disability  691–2, 694–7, 703 Norman  642 Northern Territory Mental Health and Related Services Act  545 Northstar Neuroscience  589 Norway Model  809–11 Norwegian Assistive Technology Service Delivery  809 Norwegian health and welfare system  810 Norwegian Labour and Welfare Administration (NAV)  809 Norwegian Model  817 Norwegian service delivery system  811 not-in-my-backyard (NIMBY)  478 Núcleo de Estudos da Deficiência (NED)  50, 57–8 NUDIPU  427 Nuernberg, Prof. Dr Adriano Henrique  57 Nuffield Council on Bioethics  608

Nursyamsi, Fajri  207–8, 211, 213 Nussbaum, M.C.  567 Nyangweso, M.  675 Obama  357 Obamacare  357 Obatala  675 obligations  71 Odeck, J.  703 ODSP  794–9 Office for Disability Issues (ODI)  91, 292 Office of Civil Rights (OCR)  348 Office of the High Commissioner for Human Rights (OHCHR)  234 Office of the Public Advocate  337 Offord, B.  152 Oliver, M.  17, 19, 204, 340, 641, 790 Olodumare  675 one-stop-shop model  817 one-to-one relationship  280 Ontario Disability Support Programme (ODSP) 789, 794 Ontario social welfare system  798 Open Door Programme  160 opiophobia  672 Optional Protocol  156 organic and informal social systems  126 organisation of people with disabilities (OPD)  119, 123 organizational processes  768 Orr, Z.  471 orthodox women  606 ‘other’  303, 454 ‘othering’  290 ‘other’/‘otherness’  258, 262 Owens, J.  204 Paget, A.  137 pain management  669–70, 678–9 palliative care  669–7, 679, 681 Palmer, M.  774 PANEL  565 accountability  572 empowerment  575 non-discrimination  574 participation  571 PANEL principles  565, 569, 571, 576, 577 Panzieri, Raniero  19 paradigmatic issues  489 paradigm shift  274 Parents’ Association for Persons with Intellectual Disabilities (PAPID)  476 Paris Principles  89, 212, 238, 243, 244 PAR model  392

Index  845

Parnes, P.  266 Parson, T.  568 participant information table  644 participation  49, 50–53, 55, 57–61, 69, 571 participatory indicators  67 participatory justice paradigm  413 participatory methodology  70 participatory research  33, 35–45 Part M of the Buildings and Regulations Act  691, 698, 699 passive-aggressive state  125 paternalism  798 patients with disabilities  676 Patterson, J. T.  350 Pavone, I. R.  5 penyandang cacat  205, 489 penyandang disabilitas  205, 489 people from refugee backgrounds  306 people with disabilities (PWD)  11, 13, 393, 669, 677–8, 687, 708, 721, 724–6, 729, 732–3, 741, 773–9, 781–5, 815 People with Disabilities Rights Protection Act  473, 478 people with dwarfism  691–6, 698–701, 703, 705 Performing Arts Policy  109 Person with Disabilities Rights Protection Act  184 personal assistance  184–5, 274, 276–7, 279, 280–85 Personal Assistant (PAs)  447 personal budget policy  361, 363–6, 368, 370–71 Personal Independence Payment program  398 personal stakeholders  592 personalisation  440 personalization  361, 437, 440 person-first language  663 Persons with Disabilities Act, 1995  520 Persons with Disability Act  773 ‘Persoonsvolgende Financiering’ (PVF)  363 ‘Perspective 2020’  363 Peta, C.  258 Peter  271 Petri, G.  471 Pettinicchio, D.  270, 352 Philippine Health Insurance Corporation (PhilHealth)  811 Phillips, C.  272 photovoice  367 phronesis  34 Physically and Mentally Disabled Citizens Protection Act  473 physical pain  671 Piepzna-Samarasinha. L. L.  51 Pineda, Victor Santiago  459

Piñera, Sebastián  505 Pinochet, Augusto  503 Pisani, M.  305 Plummer, K.  658 plurality  823 policies  685 Acts of Parliament and Policies  425 policy  289–91, 374, 376–80, 382–4, 452–9, 461–2, 465, 636, 685, 756, 809 domestic   289 innovation  310 policy-as-discourse theory  120 policy bodies  426 policy context  7 policy design  39 policy discourse  636 policy goals  826 policy implementation  827 policy innovation  823 policy landscape  726 policy process  1, 7 policy reform  127, 270, 829 policymakers  767–8 policy-making  202–3, 209–12, 552 Polish report  111 political card  122 political economy  121 political entrepreneurship  347, 351 political governance  125 political ideology  4 Popa, F.  461 positive attitudes  675 positive stereotypes  768 Post-Blair project  638 post-colonial  470–72, 481–2 post-school transition process  706 post-school transitions  715 post-structuralism  637 Pouw, N.  487 poverty  485, 687, 688, 800, 805 poverty indices  687 poverty measurement  509 poverty reduction strategies (PRSs)  796 Povey, R.  570 Powell, W. W.  377 pragmatic approach  157 pragmatism  156 preference-based measures  554 Prescott, T. J.  628 Presidential Regulation  212 Pressure and Release (PAR) model  391 pressure point  392 preventive measures  828 price subsidies  390, 396

846  Research handbook on disability policy

Pritchard, E.  693, 696–8, 700 product narratives  813 production ecosystem  814 productive welfare regime  472 products  809 progressive materialisation  223 progressive realisation  557–9 promotion  237, 361 protection  238 provision  810 PRSs 796, 800 ‘Psychology and People with Disabilities’  58 public education programmes’  111 ‘Public Policies, Human Rights and Educational Practices along with Persons with Disabilities’  58 public production  390, 398 Public Sector Buildings Upgrading Programme  158 Public Universities Joint Admissions Board (PUJAB)  427 Public Universities,Uganda policy  421 practice  421 Public University Councils  425 Pūras, Dainius  552, 553 PVF  364 PWD Act  519, 520, 523, 527, 528 QoL  780 quality-adjusted life years (QALYs)  555–8, 812, 814 quality of life (QoL)  551, 554, 615, 780, 784 and economic decisions  555 human rights-based approach work to  557 metrics  558 surveys  554 Quinn, G.  152, 280 Rabinow, P.  636 Raisbeck, P.  269, 272 Randolph, Jennings  349 Randolph-Sheppard Act (1936)  347 rapid assessments (RAs)  816 rapid Assistive Technology Assessment (rATA)  816 realization, state of  71 reciprocity  370 Reconciliation Action Plans (RAPs)  409 recruitment process  768 Redhead, R.  458 referral mechanisms  817 reflexion  44 reflexivity  40, 41

Reformasi (reform) movements  204 reframe policy  270 refugee  305–9, 318, 322–5 Refugee Convention  306 Refugee Council of Australia  310 refugees  305–9 regulations  390 Rehabilitation Act (1973)  353 rehabilitation activities  742 rehabilitationists  347, 348 religion  604 remote learning  711 resettlement  305–6, 308–12, 315, 317 residential care facilities  475 Resolution on Equality of Opportunity  192 resource cultivation  757 Responsible Research and Innovation (RRI)  617 responsive changes  827 responsiveness  568, 576 right to health  552–3, 559, 563 Right to Pain Management  671 right to participate in cultural life  102–5, 107–8, 113 right to work  721 rights  100–101, 233, 501–5, 512–13, 582 rights-based approach  460, 523 rights-holders  452–3, 455–8, 460–62, 464–5 rights in policy  71 rights in principle  71 rights measurement  70 rights of people with disability  824 Rights of Persons with Disabilities (RPWD) Act  517, 521, 527 Rights Protection Act for People with Disabilities  170 risk management  713 Robin Boyd Late Works 1960-71  272 robotics  617, 620, 622, 625–8, 632–4 Rodham, K.  570 Rose, N.  636 Roth, Marcie  395 RPWD Act  52–9 RRI framework  627 Rubin, G.S.  658 Ruiz-Tagle, Frei  505 rule of law  211 Runswick-Cole, K.  365 Russell, M.  351, 353 Safe Haven Enterprise Visas  318 Sakellariou  677 Salim, I.  206 Sanist Wonderland  739

Index  847

Sapu Jagat regulation  492 Saunders, T.  15 Sawaia, B. B.  52 Sayers  632 Schaaf, M.  289–90 Schalock, R.  780 school transitions  707, 714, 716 Schriner, K.  228 S. Coleman v Attridge Law and Steve Law  197 Scotch, R. K.  347–8, 355 Scotland Act 1998  566 Scotland’s National Action Plan (SNAP)  567, 576 Scottish Government  576 Scottish Human Rights Commission (SHRC)  567 sectarianism  124 sectarianization  120, 121 segregation  303 Seka hurema wafa  674 Sekolah Luar Biasa  204 self-advocacy  330–31, 338–40 Self Advocacy Resource Unit (SARU)  339 ‘self-determining subjects’  370 self-directed services  398 self-employment  775, 776, 785 self-esteem  805 self-exploratory sexuality  662 self-expression  818 self-reliance  264 self-service scanner  697 semi-structured interviews  709, 757 SENADIS  242, 243 sense of adult identity  706 Sewell Jr., W. H.  136 sexual ableism  655, 656, 658 sexual agency  653–4, 658 sexual justice  653, 658 Sexual Lives and Respectful Relationships (SL&RR) program  293–4 Sexual Lives and Respectful Relationships (SL&RR) programme  293 sexual normalcy  658 Sexual Orientation and Gender Identity (SOGI)  290 sexual pleasure  653, 658 sexual power  656 sexual stratification  658 sexual vulnerability  660 sexuality  289–90, 303, 653–66 abnormality and   290 experience  289 extraordinary  293, 295 rights  298 rights-based approach to  296

story of  289 sexuality education  653, 655, 659, 660, 662, 666 sexuality hierarchies  658 Shah, S.  660 Shakespeare, T.  131, 526, 539, 547, 697, 790 sharing power  37 sheltered workshops history and features  741 sick role  259 Sik Ying Ho, P.  658 siloing approach  408 Singapore  151 ‘access-to-inclusion’ approach  152, 154 CRPD  155 digital technology in  158 experience  152 limitation of  153 physical accessibility in  157 pragmatic approach  157 Singapore Association of the Visually Handicapped (SAVH)  161 Sins Invalid  50, 51 Sipilä, J.  792 Sláintecare  618 Sláintecare Implementation Strategy and Action Plan 2021-23  626 Slasberg, C.  445 Slovakian report  109 Smart Nation  158 Smith, B.  143 Smith, E.  616 Smith, M. S.  107 Smith-Carrier, T.  790, 795 Smith-Khan, L.  305 SNAP  567 Social Action Programmes (SAPs)  191, 198 social assistance  794 social axes  658 social capital  54 social care  437–40, 445, 447–9 social contract theory  567 social entrepreneurship  773 social exclusion  706 social identities  789 Social Impact Assessment (SIA)  778 social implementation  624 social inclusion  706, 780 social insurance programmes  221 social isolation  233 social justice  824 social model  2, 4, 12, 20, 87, 190, 274, 276, 422, 539, 547, 565, 569, 654, 693, 758, 767, 769 social model of disability  234–5, 237, 247

848  Research handbook on disability policy

social movements  338, 352, 354, 356, 827 social network analysis  814 social networks  717 social phenomena  34 social policy  33, 34, 35, 39, 42, 44, 45, 120, 274, 346, 347, 349, 350, 351, 362, 394, 396, 449 disability and  33 participatory knowledge production  34 Social Policy Agenda  186 social preferences/values  555 social protection systems  688 social proximity theory  604 social rehabilitation services  111 social rights  4 Social Rights Action Plan  195 Social Security Act  347 social services  362 social stratification  658 social vulnerability theory  391 social welfare approach  497 social work policy  361 socialization  675 socially exclusionary practices  828 societal-level risk factors  389 socio-cultural models  259 sociology  585 Soja, E. W.  458 Soldatic, K.  261, 309, 676 solidarity  130, 678, 827 Solvalagem, Alana Lazaretti  254 South Korea  741 Special Diet Allowance  796 Special Educational Needs and/or Disabilities (SEND)  638 Spicker, P.  34 Spinal Muscular Atrophy (SMA)  183 Spradley  759 SROI  779, 785 Stainton, T.  445–6 stakeholders findings  620 human rights literacy   594 medical  592 personal  592 societal  592 technical  592 Stammers, N.  365 standard of living  805 Standard Rules  198 Standards Organization  227 Star, S. L.  383, 384 state educational agencies  374 state obligations  825

State Parties  108–9, 113 Stein, M. A.  107, 488 Stein, P. J. S.  488 stereotypes  65, 657, 698, 756, 764 stereotypical disability imagery  696 Stone, E.  258 storytelling  331, 333, 335, 337–9, 341 Strategy for development of Museums and Galleries  115 stroke  565, 568–72, 574–80 structural forces  393 structuration theory  136 structuring participation  41 students with disabilities  708, 730 students with visual impairment  517 subsidiarity  501 subsidiary state  501 substantive effects  217, 226, 229 substantive equality  422, 423 substantive human rights  795 Sun, Y. S.  473 Super, C. M.  675 supervision  238 ‘support’  280 supported employment  684 supportive regulatory framework  151 Support Plan  446 ‘support plan service’  371 Survey of Disability, Ageing and Carers (SDAC)  722 Sustainable Development Goals (SDGs)  11, 437, 485–6, 488, 783, 808, 811 sustainable livelihoods  776 Sweden  810 Swerts, T.  138 symbolic action  226 Syria  322–6 Syrian community  322–4 Taeihagh, A.  628 TAFE  711, 712 Taipei City  175 Taiwan  166, 169, 178, 183–5, 741 accessible taxis in  175 accessible vans in  175 chronicle of disability legislation in  171 community-based services  476 community group  477 community living practices  470 CRPD  470 disabilities  477 disability legislation in  170, 179 disability policy  472 disability research community in  173

Index  849

disability system  169 evolution of disability legislation and policy in  169 Familialistic Welfare Regime  472 government  179 institutions  475 political system in  180 residential institutions  475 transportation system in  173 Taiwan Ministry of Health and Welfare  174 Tajikistan  817 Tanzania  674, 817 Taylor, S.  53 teachers  715 teaching  632 Technical Advisory Disability Committee (ADC)  429 technical and further education (TAFE)  710 technical stakeholders  592 technology  581, 582 medical science and  589 technology access  593 technology advancements  819 technology ecosystem  818 Teffo, J.  258 Tesemma  677 The Africa we Want Agenda 2063  257 The Hidden Welfare State  593 The Organization for Economic Cooperation and Development  397 ‘The Right to the Highest Attainable Standard of Health’  615 The Straits Times  151 Thomas, C.  569 Thompson, S.  792 Titchkosky, T.  695 Titmuss, Richard  793 Tlou, J.  672 Tōjisha-kenkyū  617 Ton, K. T.  393 Tonkens, E.  366 toolboxes  25 Touching Base  291, 300 Towards a Barrier-Free Europe for People with Disabilities  193 Traditional African Values  672 Traditional Authorities (TA)  142, 144–5 trained personnel  810 transdisciplinarity  461, 463–5 transformative equality  422, 423 transit authorities  167 transnational disability rights  471 transportation

evolution of  179 transportation policies  170 transportation services  174 transportation system  168, 177–8, 180 treacle of bureaucracy  639 Treaty of Amsterdam  189, 197 Treaty of Lisbon  197 Treaty of Rome  197 Treaty on European Union  187, 192 Treaty on the Functioning of the European Union (TFEU)  187 triangulation  35 trickle-down theory  503 Trump administration  353 Tsaputra  271 Tsutsui, K.  470, 480 Turner, B. S.  798 Ubuntu  257–9, 261–2, 264–6, 672–5, 678–9 Ubuntu’s  261–2 UFSC Center for Disability Studies  50 Uganda  421–2, 425–6, 428, 430, 433, 488 Constitution of Uganda 1995  425 higher education  425–6, 430 Uganda National Examinations Board  425 Uganda’s Constitution 1995 art. 32  426 UHC  811, 820 UK disability statistics in  438 UK Equality Act 2010  576 UMI process  462–3 analyses   464 assessment  464 mapping  464 project initiation  463 reporting   464 UN Declaration on the Rights of Indigenous People (UNDRIP)  411 UN Flagship Report on Disability (2019)  264 UN International Year of Disabled Persons  544 unemployment 687, 706, 724, 728 Union of the Physically Impaired against Segregation (UPIAS)  204 United Nations  88, 309, 323, 586, 600 United Nations Commission on Human Rights  88 United Nations Committee on Economic, Social and Cultural Rights (UNCESCR)  71 United Nations Convention on the Rights of Persons with Disabilities (CRPD)  2–4, 8, 11, 85, 87, 97, 102, 118–19, 121–2, 126, 128–31, 135, 139, 151, 191, 196–7, 217, 257, 274, 307, 331–42, 363, 370, 422, 452,

850  Research handbook on disability policy

485, 517, 519, 534, 546–8, 568, 586, 706, 758, 798, 805, 807, 824–7 Article 1  422 Article 24  423 Article 28  773 United Nations Development Programme (UNDP)  776 United Nations Disability Human Rights Guidelines  167 United Nations Office of the High Commissioner for Human Rights (OHCHR)  72 United Nations Population Fund  657 United Nations Refugee Convention  306 United States Department of Education  380 disability policymaking in  356, 374, 376 policy compliance  377 United States Global Climate Change Research Program  389 Universal Declaration of Human Rights (UDHR)  102, 449, 673 universal design  702, 789, 792–4, 798–803 Universal Design  53, 62 Universal Design of Learning  53 universal eye care  811 Universal Health Care (UHC)  808 Universal Mobility Index Process  453 Universal Periodic Review (UPR)  155 universal rights regime  191 Universities and Other Tertiary Institutions Act (UOTIA)  426 Section 7(1)(i)  426 section 24(2)(b)  426 section 24(2)(c)  426 section 38 (1)(r)  426 University Disability Centre  433 University of New South Wales  410 University of Queensland  409 UOTIA Section 28 (3)  427 UPIAS/DIA movements  86 U.S. Assistive Technology Act of 2004  595 U.S. Constitution’s Equal Protection  374 U.S. health care system  584 U.S. liberal welfare  584 U.S. Treasury  593 user-centered innovations  817 ushavi  265 Vaessen, J.  781, 782 Valdebentio  271 valley of death  584, 589, 594 value  813, 814

Vanik, Charles  349 van Pletzen, E.  137 Vehicle License Act  175 Venn diagram  15 viable programmes  783 Victorian Council of Social Services  338 violence  667, 668 visual impairments  819 Vocational Rehabilitation Act  349 voice  136, 138, 139, 140, 141, 142, 143, 144, 146, 148 Voluntary Sterilisation Act (VSA)  155, 156 vulnerability  389, 390, 391, 392, 394 Waddington, Lisa  285 Walmsley, J.  37, 361 Wang, C.  367 War Crimes Protection Legislation  323 Wasserman, D. T.  608 Watson, N.  131 Wazi Vision  818 Web Content Accessibility Guidelines (WCAG) 2.0  159 Wehbe, Ayah  270 welfare  3, 180, 285 welfare-based care  275 Welfare Law for Handicapped Persons  473 welfare policy  454 welfare-rights connection  346 Welfare Rights Protection Act of People with Disabilities  170 welfare services  793 welfares state programs and services  399 welfare state  389–90, 392–9 definition  390 wellbeing  672, 687, 726, 806 Welling, J. V.  70 West, R.  534, 340 Whaikaha, Mana  292 wheelchair assessments  818 wheelchair users  697–700, 703 White Paper  363 WHO  422, 616, 658, 676, 819 WHO GATE  808 WHO-INTEGRATE  553 WHO model  817 Willowburn Epileptic Home  542 Willowburn Insane Asylum  542–3 Witchcraft Suppression Act  673 Wolfgang Glatzel v Freistaat Bayern  198 women with physical disability  654–6, 663–4 Wong, M. E.  156 Workforce Act of 2003  210 workplace discrimination  799

Index  851

workplace leadership  763 World Conference on Special Needs Education 1994  520 World Health Assembly  547, 669, 671, 679 World Health Assembly directive  811 World Health Organisation (WHO)  307, 365, 544, 546, 553, 654, 669, 671, 694, 775 World Report on Disability  485 Yacob, Halimab  160 Yap, J.  264 Yi-Chun Chou  479 Ying Tan, S.  628 Yoshida, K.  266

young people  715, 716 young people with disability  706, 707 school transitions for  707 Zhuang, K. V.  156, 157 Zimbabwe  256, 260, 262, 265, 266, 669–70, 673, 676, 677, 678, 679, 680, 681 Zimbabwean Jairos Jiri Association  259 Zimbabwean Sign Language (ZSL)  678 Zimbabwe’s Disabled Persons Act  677 Zirnsak  270 Zola, Irving  793 Zwingel, S.  471