Applying Body Mapping in Research: An Arts-Based Method 2020022677, 2020022678, 9780367355623, 9780367355630, 9780429340260

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“Applying Body Mapping in Research provides the reader with an array of valuable lenses to explore body mapping approaches using ethical, inclusive, and respectful practices. Boydell and colleagues share a series of vivid examples as to how this arts-based, interdisciplinary approach allows for new ways to creatively engage, extend, and translate research.” Professor George Belliveau, Faculty of Education, University of British Columbia, Canada “This book with its many perspectives, clear writing, and guiding principles will finally allow the powerful technique of body mapping to enrich the armamentarium of both researchers and clinicians. Body mapping allows for a visual, tangible image that allows for self-reflection and storytelling. It is a narrative approach using body sensations, often a private experience but also potentially a shared one that engages others. It puts us in touch with our senses, perceptions, positive and negative emotions, and drives home the fact that body and mind are one.” Mary V. Seeman, OC MDCM, Professor Emerita, Department of Psychiatry, University of Toronto, Canada “Creative arts-based methods for social research are gathering momentum. Body mapping is one such method. This edited collection provides many fascinating examples of how body mapping can be used. The contributors demonstrate exciting possibilities for using the method to encourage people to think about and represent their multisensory and affective experiences and memories through images as well as words. Readers will doubtless be inspired to experiment with body mapping in their own research or public engagement and knowledge translation activities.” Deborah Lupton, PhD, FASSA, DSocSci (honoris causa)

APPLYING BODY MAPPING IN RESEARCH

This book provides an overview of the innovative, arts-based research method of body mapping and offers a snapshot of the field. The review of body mapping projects by Boydell et al. confirms the potential research and therapeutic benefits associated with body mapping. The book describes a series of body mapping research projects that focus on populations marginalised by disability, mental health status, and other vulnerable identities. Chapters focus on summarising the current state of the art and its application with marginalised groups; analytic strategies for body mapping; highlighting body mapping as a creation and a dissemination process; emerging body mapping techniques including web-based, virtual reality, and wearable technology applications; and measuring the impact of body maps on planning, practice, and behaviour. Contributors and editors include interdisciplinary experts from the fields of psychology, sociology, anthropology, and beyond. Offering innovative ways of engaging in body mapping research, which result in real-world impact, this book is an essential resource for postgraduate students and researchers. Katherine M. Boydell is Head of the AKT (Arts-Based Knowledge Translation) Lab at the Black Dog Institute and Director of Knowledge Translation, Sydney Partnership for Health Education Research and Enterprise, Australia.

APPLYING BODY MAPPING IN RESEARCH An Arts-Based Method

Edited by Katherine M. Boydell, Contributing editors: Angela Dew, Susan Collings, Kate Senior, and Louisa Smith

First published 2021 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 selection and editorial matter, Katherine M. Boydell; individual chapters, the contributors The right of Katherine M. Boydell to be identified as the author of the editorial material, and of the authors for their individual chapters, has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Boydell, Katherine, editor. Title: Applying body mapping in research: an arts-based method/edited by Katherine M. Boydell. Description: 1 Edition. | New York : Routledge, 2020. | Includes bibliographical references and index. Identifiers: LCCN 2020022677 (print) | LCCN 2020022678 (ebook) | ISBN 9780367355623 (hardback) | ISBN 9780367355630 (paperback) | ISBN 9780429340260 (ebook) Subjects: LCSH: Space perception. | People with disabilities—Psychological aspects. | Body movement. | Self-consciousness (Awareness) | Social sciences--Research. Classification: LCC BF469 .A677 2020 (print) | LCC BF469 (ebook) | DDC 306.4/613--dc23 LC record available at https://lccn.loc.gov/2020022677 LC ebook record available at https://lccn.loc.gov/2020022678 ISBN: 978-0-367-35562-3 (hbk) ISBN: 978-0-367-35563-0 (pbk) ISBN: 978-0-429-34026-0 (ebk) Typeset in Bembo by MPS Limited, Dehradun

CONTENTS

List of Figures List of Tables List of Contributors Foreword by Jane X. Solomon Introduction Katherine M. Boydell 1 Applying body mapping to research with marginalised and vulnerable groups Katherine M. Boydell, Susan Collings, Angela Dew, Kate Senior, and Louisa Smith

ix xi xii xvi 1

6

2 Mapping conversations: body maps as relational objects in groups and dialogues Louisa Smith and Kate Senior

18

3 Representations of complex trauma: body maps as a narrative mosaic Susan Collings and Louisa Smith

27

4 Body mapping in process: observing how participants represent experiences of anxiety Susan Cox, Marilys Guillemin, and Katherine M. Boydell

37

5 The logistics of making and preserving body maps as research data Angela Dew, Anna Tewson, Bernadette Curryer, and Isabella Dillon Savage

47

viii Contents

6 Meaning-making and research rigour: approaches to the synthesis of multiple data sources in body mapping Susan Collings, Angela Dew, Bernadette Curryer, Isabella Dillon Savage, and Anna Tewson

57

7 Development of a web-based body mapping application Bryn Ludlow

67

8 Body mapping and virtual reality Sarah Ticho

81

9 Wearable technology and body mapping Geoffrey Edwards

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10 Audience response to the dissemination of body mapping research via installation art Katherine M. Boydell, Adèle de Jager, Anna Tewson, and Priya Vaughan

104

11 Real-world integration: body maps as a planning tool Angela Dew, Susan Collings, and Isabella Dillon Savage

114

Concluding remarks: remembering the body Katherine M. Boydell and Treena Orchard

123

Appendix Index

131 136

FIGURES

3.1 3.2 3.3 3.4 5.1 5.2 5.3 6.1 6.2 7.1 7.2 7.3 7.4 8.1

8.2

8.3

8.4 9.1 9.2

Transgressing the limits of the body map Process of reinscribing maternal love and loss Depicting the impact of emotional violence Use of various craft materials Table with art supplies Researcher and participant drawing body mapping outline Body outline used in Study 5 guide Jess’ body map Dreams of restoration Body map test 1 – pathways of the vagus nerve Body map test 2 – a patient receiving haemodialysis therapy Body map test 3 – expressing sensations with colour alone The web-based body mapping application Image of Hatsumi virtual reality body mapping environment built within Unity games engine, including drawing palette and paintbrush controller Virtual reality body mapping image created by artist Lisa Finch. The dotted lines in the image are animated and move in and around the body Virtual reality body mapping image created by Liam Waters. This illustration demonstrates both their mental and physical experience during their recovery from a severe shoulder injury Virtual reality body mapping image created by artist Clare Plumley. This is an illustration of her experience of chronic pain The basic wearable body mapping app running on an Android™ smartphone Body map example shown in prototype body mapping app

30 30 33 33 48 49 52 59 60 72 73 74 75

83

84

87 88 95 96

x

Figures

9.3 The digitisation environment: (a) some of the shapes available and (b) the shape placement submenu 9.4 Body map under oblique viewing condition 10.1 Keeping the Body in Mind body mapping exhibition 10.2 Snakes and ladders installation 11.1 Praxis action research approach 11.2 Research process used to create ‘Living the life I want’: A guide to planning 11.3 Action research cycle

97 98 106 107 115 118 119

TABLES

6.1 6.2 6.3 A.1

Key to Jess’s body map Common symbols across sample in Study 8 Study 5 axial embodiment analysis subset List of body mapping studies referred to in the book

61 62 64 132

CONTRIBUTORS

Katherine M. Boydell is Head of the AKT (Arts-Based Knowledge Translation)

Lab at the Black Dog Institute and Director of Knowledge Translation, Sydney Partnership for Health Education Research and Enterprise, Australia. Her participatory, collaborative program of research uses the arts as a knowledge translation strategy – in the creation and dissemination of research (including documentary film, dance, digital storytelling, found poetry, installation art and body mapping) to share empirical research findings with a wide range of audiences. Using these strategies has resulted in increased mental health literacy, decreased stigma, and enhanced help seeking. Her work has interrogated the theoretical, methodological, and ethical challenges of engaging in arts-based knowledge translation, which are described in her recent editorship of a special issue of the Journal of Applied Arts & Health. Susan Collings conducts social sciences research to generate new insights about the

experiences and needs of vulnerable children and families. She has used participatory and visual methods to explore complex social disadvantage including body mapping and photovoice projects. Her approach to knowledge creation is based on learning from lived experiences and has inspired novel approaches to engaging with clients. Susan is a lead investigator on action research in collaboration with child welfare agencies to co-design resources that promote trauma-informed practices for children and families. Susan Cox is an associate professor in the W. Maurice Young Centre for Applied

Ethics and the School of Population and Public Health at the University of British Columbia, Vancouver, Canada. Her research interests include narratives of health and illness, experiences of participants in health research, and ethical, methodological, and other implications of using the arts as a form of inquiry as well as for knowledge translation and exchange. Her scholarly and creative work is published in arts-based

Contributors xiii

and qualitative research journals, along with chapters in edited books on visual methods, research-based theatre, and arts and health. Her current research projects focus on visual-based learning in medical education, theatre addressing graduate supervision and well-being, and poetic inquiry as means of transforming experiences of dementia. Bernadette Curryer is a current PhD candidate at the University of Sydney,

researching self-determination of adults with intellectual disability within the context of family relationships. Her experience of parenting an adult daughter with an intellectual disability, together with professional involvement in the fields of self-advocacy and adult education, has resulted in a strong belief in the right of people with disability to live a life of choice, purpose, and inclusion. She has a growing interest in the utilisation of arts-based research methods, such as body mapping, to ensure that the voice of people with disability, and their families, can be heard. Adèle de Jager is a clinical psychologist in private practice. She previously worked as a research officer at the Black Dog Institute and continues to contribute to research projects. As part of Professor Katherine M. Boydell’s team, her research was focused on qualitative, arts-based research methods, knowledge translation, and the subjective experience of psychosis. Angela Dew is a sociologist with almost 40 years of experience in the Australian

disability sector. Her research and teaching relate to understanding the specific issues faced by people with intellectual disability and a range of complex support needs including living in rural and remote locations and coming from an Aboriginal background. Angela uses 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. She has written 60 peer-reviewed publications, 15 reports, and 11 practice guides and regularly presents at international conferences. Isabella Dillon Savage conducts research with diverse participants including professionals/practitioners and vulnerable population groups such as children and young people, people with disability, and complex support needs (criminal justice system, substance abuse, experience of gender-based violence) with the intention to inform policy and practice. Geoffrey Edwards is Holder of the Canada Research Chair in Cognitive

Geomatics, and trained originally as an astrophysicist. He has concentrated his efforts towards the development of cognitively informed tools for accessing and processing geospatial data. Recently, he has developed an unusual research programme that brings together a cognitive understanding of space and spatial design within an artistic perspective (installation, media, and performance art), with applications to physical rehabilitation and to museology. He currently works on the redesign of the relationship between the body and its environment by using

xiv Contributors

methodologies that combine scientific and artistic elements. He focuses on immersive and interactive installations aiming public awareness to the issues of disability and handicap, on the development of clinical tools, and the development of smart environments (including smart clothing). Marilys Guillemin is a health sociologist, and has published widely in sociology of

health, illness and technology, innovative research methodologies, research practice and ethics, narrative ethics, and health care ethics. She has undertaken research and published widely in visual and sensory methodologies. She is particularly interested in the ethical and methodological challenges of sensory research, including body mapping. In addition, she has completed research on how ethics committee members and health researchers understand research ethics and how they address ethical issues in practice, and the role of trust in human research from the perspectives of researchers and research participants. Bryn Ludlow is an artist, and PhD candidate in the York and Ryerson Joint Graduate Program in Communication and Culture. Her dissertation addresses diverse perspectives on digital stories by former youth in foster care in Canada. Bryn is an International Affiliate Member at the Centre for Oral History and Digital Storytelling at Concordia University, Montréal, Quebec. Bryn has authored and co-authored art and social science-based publications in The Medical Post; Ars Medica: A Journal of Medicine, the Arts, and Humanities; the American Journal of Kidney Diseases (AJKD); the Association for Computing Machinery (ACM); and Forum: Qualitative Social Research (F-QSR). Treena Orchard is an anthropologist with cultural and medical expertise, and conducts ethnographic research with women and others in sex work, people with HIV/AIDS, and Indigenous populations. Her special interests include sexuality, gender, marginalisation, and the politics of health. She conducts collaborative ethnographic research with women, men, youth, and gender variant groups who often struggle to have their lives cared about safely and respectfully. She also engages in creative writing, activism, yoga, and arts-based ways of communicating. Kate Senior is a medical anthropologist with extensive experience working with remote Aboriginal communities, with an emphasis on understanding the way that people live and conceptualise health and well-being and the barriers they face while accessing health services. Recently, her research has focused on the health and well-being of Indigenous adolescents. Kate’s work has also explored young people’s understanding of sexual health and relationships. Louisa Smith is a research fellow at AHSRI. Louisa’s 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. Prior to arriving at AHSRI in 2018, Louisa worked as a lecturer and education and training lead at the Intellectual Disability Behaviour Support Program. In 2015, Louisa (and other

Contributors xv

chief investigators from UNSW, La Trobe, Monash, and QUT) was awarded an ARC Linkage, Lost in Transition: Improving the lives of young people with complex support needs. Louisa approaches all research and teaching as a means of fostering social inclusion and belonging, through co-production, arts-based methods, and knowledge translation at all stages of the process. Anna Tewson is a research officer at the Institute of Child Protection Studies in

Canberra. In this role, Anna contributes to multiple projects, including in the outof-home-care area. Previous to this, Anna was a research assistant at the Black Dog Institute, assisting Professor Katherine M. Boydell across a number of projects focused on arts-based knowledge translation. Anna is currently completing her Masters of Social Work at the Australian Catholic University, and hopes to move into direct practice with children and families in the future. Sarah Ticho is a producer, curator, and founder of Hatsumi, a VR company that

works at the intersection of arts, health, and immersive technology. She has a background working in the creative arts and academia as a researcher and has worked with a diversity of organisations across research, storytelling, and contemporary art including The School of Life, Fabrica Gallery, TEDxSydney, University of New South Wales, and Stanford University. Following a one-time episode of psychosis, she became fascinated with virtual reality as a tool to offer insight into lived experience, and while working as a curator at the Big Anxiety Festival, Sydney, discovered body mapping. The company is developing a virtual reality adaptation of body mapping, enabling people to visualise lived experience of chronic pain, anxiety, and other health conditions using 3D drawing tools, soundscapes, and audio description. Alongside her work with Hatsumi, she is the producer of Deep VR, a breath-controlled VR experience to teach deep breathing and emotional regulation. She is also the Healthcare Lead for Immerse UK, which unites cross-industry organisations to support the UK in becoming the global leader in applications of immersive technologies. Priya Vaughan is a cross-disciplinary researcher who uses visual art and material

culture as a frame through which to explore Australian cultures, experiences, and histories. She received her PhD from the Australian National University in 2018, and completed her MPhil in Social Anthropology at Oxford University in 2012. She teaches at the National Art School, and is a postdoctoral fellow at thhe Black Dog Institute, Sydney.

FOREWORD Jane X. Solomon

Body mapping, getting someone to draw around our body shape, is something many of us have done (for example, in the sand as children) and links to ancient practices, when without mirrors, people saw reflections of themselves as shadows and shapes and visually represented who they were through body outlines and handprints in ochre and charcoal. I create printed textiles, processes, and workshops, and came to this work not as an academic, researcher, or therapist, but as a designer who uses creativity to process challenges and vision my life. Body mapping has allowed me to share my creativity with groups using art-making and storytelling to shift how people see themselves and relate to the world around them. I have been busy with this practice over the past 17 years.1 In 2001, Jonathan Morgan, a clinical psychologist working at the AIDS Society Research Unit, Center for Social Studies and Research, University of Cape Town, South Africa, ran memory-box workshops with people living with HIV at the Khayelitsha day hospital. Khayelitsha is a large, partially informal township on the outskirts of Cape Town. At that time, the President, Thabo Mbeki, stated that HIV does not cause AIDS and, thus, there was little treatment available in South Africa. Memory-box work originated in Uganda, where participants reflect on their lives by gathering documents such as photos, special objects, drawings, and writings together in a container. Pre-antiretroviral treatment, memory work was used to assist people living with HIV prepare for their deaths and leave behind a legacy for their children. In 2002, through the efforts of Medecins Sans Frontieres (MSF) and the Treatment Action Campaign (TAC), some people living in Khayelitsha were beginning anti-retroviral treatment (ART). From the Khayelitsha memory-box group, 12 women and one man, called the Bambanani group, who had access to

Foreword xvii

treatment, volunteered to tell their story publicly in an advocacy book titled Long Life: Positive HIV stories. ‘We the Bambanani group are making this book because we want to teach people living with HIV how to live with HIV. And also, to teach those who are not living with it how to survive. And to let people know that we positive people are getting treatment to help us live longer’. I facilitated art-making workshops with the Bambanani group to generate imagery that could be used to illustrate the Long Life book, and as a starting point to generate the narrative. My response was informed by: a polarity-therapy course I had attended where I learnt that the body holds memory on a cellular level and in order to change patterns we need to shift things in the body; my yoga practice where I was amazed by how much transformation takes place on a small mat; and my work with a craft/income-generation group of marginalised and vulnerable women where I had experienced women’s courage in talking about/confronting difficult issues directly. I had heard a little about body mapping, a drawing/therapy technique that was popular in the 1970s (especially around body image), and had been exploring it as a tool for self-discovery. I thought that, for the Long Life Project, rather engaging participants in creating a number of small drawings, they could instead outline their bodies (body map) onto a large sheet of cardboard (more or less the same size as a yoga mat) and use this body shape to create layered life size portraits, wherein many different aspects of the self would operate simultaneously. In response to a brief given, I developed a carefully planned sequence of exercises to guide participants safely through relevant issues around HIV and lived experience. I kept in mind that as well as making images for the book, the actual process of creating would be beneficial; participants would have the opportunity to express their feelings, tell their story, and have it heard. Although, the memory-box work could be seen as creating a container to prepare for dying, body mapping would examine the body as a living container preparing to live (potentially a long life) with HIV. Fourteen art-making sessions took place in a small portioned-off room at Khayelitsha day hospital. I facilitated the sessions with Jonathan Morgan present for psycho-social support. Throughout the workshops, the process was seen as more important than pushing for a finished product/artwork. The process was powerful, bringing inner worlds to the surface to create dynamic, life-size artworks. One of the exercises involved participants drawing how they see HIV and placing the image of the virus where they feel it on their body outline. There was initially some hesitation on the part of the psychologist to include this exercise in the process. The exercise was included, facilitated with sensitivity, and proved to be a critical part of the process. When the virus is drawn onto the body map, it becomes part of the bigger life picture/self-image. This assisted participants to integrate the virus into their lives, see the virus as not the most important part of their lives, and navigate a future living with HIV. On completion of the exercise and stepping back to view her body map, one participant remarked ‘The virus is small, I am big!’

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Foreword

In 2003, with informed consent from all participants, the completed artworks were used alongside text (from interviews) and photographs (taken by participants) in a book, Long Life, authored by Morgan and Bambanani Women’s Group (2003). The book and exhibition were launched at the National Gallery in Cape Town on World AIDS day in 2003. The exhibition, walkabouts, and book equipped the previously voiceless with the creative means to speak powerfully. Audiences appreciated that the Bambanani Group were joint authors and owners of the images and stories, and learnt from reading/seeing/hearing firsthand accounts of lived experience. The Long Life Project raised awareness, reduced stigma, and added to the active struggle to get government to provide treatment for all people living with HIV (eventually achieved in 2008). After the workshop and exhibition, it was recognised that as well as creating powerful advocacy images, the actual body mapping process was beneficial to participants. A body mapping workshop with doctors and other health professionals was held to gain their input/insight to refine and address safety issues around the process. Requests to use the body mapping process elsewhere were received and facilitated with adapted exercises including workshops with survivors of trauma, individuals in the Truth and Reconciliation Commission (TRC), and for intergenerational dialogue documenting oral history with Indigenous people. The body maps were exhibited and well received at the first South African AIDS conference in 2003 and International AIDS conference in Toronto in 2006. From here, many groups picked up on the idea and body mapping projects were set up in many different countries including Kenya and India. In 2007, the Road to Well Being Project, a collaboration between myself, the Regional Psychosocial Support Initiative (REPSSI), and Canadian AIDS Treatment Information Exchange (CATIE) worked to combine body mapping and treatment literacy. Workshops with people living with HIV were held in Tanzania, Zambia, Toronto, and Ethiopia. As well as body mapping, the workshops included learning more about how the body works, the virus, treatment, adherence, and side effects. Including knowledge transfer as a part of the participatory body mapping process was successful and improved communication between health care workers and clients resulting in clients having a better understanding of themselves and HIV. As part of the Road to Well Being Project, I wrote a manual with input from Jonathon Morgan, ‘Living with X’ a body mapping journey in the time of HIV/ AIDS. This publication outlined the process with detailed step-by-step exercises. It was published by REPSSI and placed online as creative commons/open source. Body maps are very evocative tools. Participants express their feelings, many of which can be difficult and painful. This issue of ‘dangerous emotional terrain’ is taken up by authors in Chapter 1, who acknowledge the dangers of body mapping and posit some solutions. If body mapping is conducted in an unsafe environment and/or with untrained facilitators, participants can be re-traumatised. In my experience, after receiving feedback from some people who had used the online

Foreword xix

manual (without having had training or the support skills needed) and experienced problems, REPSSI realised that having the manual on an online platform was not a good idea and it was removed. The Long Life Project was first conducted in the Center for Social Studies Research. Although the main thrust of the project was for advocacy, it became clear that the process was also suitable for research. Within the narratives, heartfelt stories and beliefs emerged. This information provided valuable data that could be used to inform policy and improve services. The body mapping process is adaptable and can be used in a variety of contexts, as is outline in the chapters of this comprehensive text. Some of my body mapping research studies include the following: a 2007 workshop to explore the biomedical/psychosocial implications of males living and aging with HIV/AIDS in Toronto for the Ontario HIV Treatment Network, a 2011 workshop to research how living environment impacts on mental, physical, emotional, and psychological well-being with people living in Khayelitsha for the African Center for Healthy Cities and a 2017 workshop/study to explore the embodied experiences of contraceptive methods and family planning with women in South Africa for Women’s Health Research Unit. When I conducted a Google search for body mapping in 2002, only one example of body mapping was uncovered, a research study exploring rural fertility rates in Jamaica (1987). When I searched body mapping prior to writing this foreword, pages and pages of images and examples presented themselves. It is truly incredible how body mapping has gained popularity and is being used in many different contexts and projects around the world. In South Africa, body mapping work has developed organically, based on a human centric approach, informed by a history of struggle and driven by the belief that we are activators of our own change to create the future we desire. In our experience of facilitating workshops in South Africa, other African countries, and USA, we have found researching health/wellness issues works well with body mapping. The body is central to human experience and defines who we are in the world using the body outline to tell the story accesses an embodied human experience. The chapters in this text highlight the critical importance of embodied knowing and the ways in which body mapping can address experiences of vulnerability and marginalisation. There is an emerging evidence base available to validate the value of the many benefits, both process and outcome, of body mapping process. A book like this, an academic investigation into body mapping, is much needed, and provides the theory and evidence base behind why the process works. In doing so, body mapping is formalised as a research tool to both create and communicate knowledge. Validation comes at a time when doctors and scientists are acknowledging the significant and central role that the arts (human expression and creativity) play in driving innovation and enhancing well-being, and will potentially assist in finding funding for artsdriven research studies. It is of vital importance that body mapping is fit for purpose. The body mapping process is intense and enlists deep emotions that become a powerful force for

xx Foreword

change. The process requires proper, trained facilitation and psychological support. This book addresses this by including theory on logistics, putting in place ways to ensure that body mapping research is conducted in a safe environment with the necessary support, and identifying possible pitfalls, dangers, and mitigating strategies. Researchers are responsible to participants to feed data research papers to relevant channels that are able to use the information to drive change/innovation around the issue researched to the benefit of the communities/people who participated in the study. Unfortunately, research studies often never go beyond being published papers in prestigious academic journals. Chapters in this text illuminate innovation in research dissemination, for example a detailed description of a body mapping art installation and the use of body mapping as planning tool. The book also examines approaches to the synthesis of multiple data sources in body mapping. Interpretation of body maps and data generated is open to misinterpretation. It illustrates efforts to ensure interpretive cohesion, endorse visual and textual themes, circumvent reductionism of symbols, and honour the non-linear expression of embodied experience. This gives a framework to prevent researchers from simplifying readings and making assumptions about the meaning of hand-drawn symbols. It is important that symbols are understood within the context they are created and the meaning voiced by the person who created them. It is the responsibility of facilitators and researchers to conduct studies in an ethical way: use and/or exhibit information and images with informed consent from participants with the choice to change their minds at anytime in the study. This text gives valuable insight on how to approach the ethics of body mapping with a focus on marginalised and vulnerable groups. Creating a holistic life-sized energy map that expresses the emotional, physical, mental, and spiritual aspects of one’s life assists in integrating the past with present to ideate the future. I trust that this text will provide the impetus for others to engage in the use of body mapping in the research process, as a data collection tool that has beneficial consequences, and as a communicative dissemination strategy to share research findings.

Note 1 My body mapping work has been a participatory journey and a joint effort. Acknowledgements and thanks to many people who have contributed developing this tool: workshop participants and activists (with special thanks to Nondumiso Hlwele), doctors, therapists, academics, funders, and all those who believe in the value of creative approaches to problem solving.

Reference Morgan, J. and Bambanani Women’s Group. (2003). Long life: Positive HIV stories. North Melbourne, Victoria, Australia: Spinifex Press.

INTRODUCTION Katherine M. Boydell

Visual and arts-based research methods represent an effective means of representing or expressing unique lived experiences of health and illness (Ball & Gilligan, 2010), as well as experiences of interventions, programs, services, and social contexts (Boydell et al., 2012; 2018). Body mapping is an arts-based research method which, due to its focus on embodied experience, lends itself to exploration of sensory and psychological experience. Body mapping involves ‘… tracing around a person’s body to create a life-sized outline, which is filled in during a creative and reflective process, producing an image representing multiple aspects of their embodied experience …’ (de Jager et al., 2016). De Jager et al.’s systematic review of body mapping literature confirms the potential research and therapeutic benefits associated with body mapping, ultimately concluding that ‘… more empirically grounded work [which utilises body mapping] would strengthen its acceptability in certain research and clinical contexts’ (ibid). This book provides an overview of the current state of body mapping in research and outlines the authors’ theoretical and epistemological positions as researchers from a variety of disciplines, and in particular, how this aligns with arts-based methods (for example, participation, agency and knowledge translation potential). The diversity of body mapping is explored in terms of the manner in which it has been applied in research and the core methodological features of this arts-based strategy are identified. The main themes of the book include body mapping as knowledge creation, body mapping as knowledge dissemination, new approaches to body mapping, and the impact of body mapping research. The central objectives are as follows: (1) to provide an overview of body mapping and its current state of the art; (2) to describe a series of body mapping research projects as applied to marginalised groups; (3) to detail analytic approaches to the analysis of body maps; (4) to describe body mapping as a knowledge creation process; (5) to describe body mapping as a

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Katherine M. Boydell

knowledge dissemination strategy; (6) to profile innovative ways of engaging in body mapping research; and (7) to explore the ways in which body mapping has an impact on planning, practice, and behaviour. This book represents the first text on the use of body mapping in research across a number of different substantive areas focused on populations marginalised by disability, mental health status, and other vulnerable identities. It includes authors from psychology, sociology, anthropology, creative arts and design, and engineering. The chapters in the text make reference to a number of body mapping studies undertaken by the various authors and have been summarised in Appendix 1 of this text. Chapter 1 focuses on the application of body mapping to research with marginalised and vulnerable groups. Boydell et al. draw on a conversational style wherein they reflect on a series of questions about their respective use of body mapping in research with marginalised and vulnerable populations. These studies included young people experiencing psychosis, individuals impacted by intellectual/cognitive disability, and Aboriginal young people. They interrogate their selection of body mapping for engaging in research with the groups they were working with, address the reasons why partnerships were so integral to the work and the ways in which body mapping processes contributed to the explanations of complexity and intersectionality, and its effectiveness in revealing ‘hidden stories’. They conclude the chapter with identification of their greatest challenges in using body mapping in research. Using the example of sexual health, relationships, and sexual decision-making, in Chapter 2, Senior and Smith explore the use of body mapping to engage young Indigenous people in topics which are often extremely sensitive and difficult to talk about. They used a hypothetical scenario to guide the body mapping activity in their group-based activities to ensure that young people could talk about issues that were important to them without revealing any personal information. Consequently, the method was considered by young people and their communities to be a safe way of discussing extremely important issues. Chapter 3 considers body mapping research with adults who have experienced childhood trauma and reflects the ways in which this method supported these individuals to tell their stories in different ways, which have implications for both research and practice. Given body mapping’s origins in art therapy, it is not surprising that it is a useful research tool for use with people with a trauma background. Although Collings and Smith acknowledge that body mapping may also be a very helpful recovery-based intervention and therapy for trauma survivors, this application is beyond the scope of this chapter. Instead, they focus on how the embodied experience of body mapping allows for important insights about the residual impact of childhood trauma to emerge and how body mapping allows adults with complex trauma histories to story the self and represent past trauma. Chapter 4 focuses on using body mapping to explore experiences of anxiety with the general public. Cox et al. describe a body mapping workshop that took place at the Art Gallery of New South Wales, where members of the general public created their own, life-sized body map. During the workshop, participants

Introduction

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were led through a series of meditative and creative activities based on the tenets of mindfulness and positive psychology to help them articulate and visually express their experiences of, and methods for coping with, every day and out of the ordinary anxiety. The method used represented a modified body mapping approach designed to be used in a public setting in a shortened time period. The authors facilitated the process and took detailed observational notes of how participants appeared when first approaching the task of body mapping and their process of decision-making regarding the task, during the actual practice of body mapping, and upon completion of the body mapping. Although this modified body mapping approach presents some challenges, they argue that its benefits provide useful and interesting possibilities for the use of body mapping in a public setting. Dew et al. explore the logistics of making and preserving body maps as research data in Chapter 5. They provide a practical overview of considerations for researchers using body mapping. The creation of body maps as research data is a time and resource intensive method requiring considerable pre- and ongoing-planning on the part of researchers. Planning includes making decisions about the range of art materials made available to research participants to create their maps, the space requirements, any adaptations that may need to be made to make the method accessible for all participants, scheduling sufficient time for participants to meaningfully engage in the body mapping process, ways to best capture and preserve the detail and complexity of the maps using photography, and subsequent storage of the physical maps. Chapter 6 reflects on the way researchers have approached the task of interpreting the multiplicity of data produced using body mapping. The legacy of body mapping as a tool for therapeutic storytelling lingers in the focus on data generation and dissemination – knowledge translation. This has had notable implications for its use in research, with less emphasis on how to synthesise creative products of the body mapping process to add value to analysis. Collings et al. use research examples to reveal the potential that body mapping offers for interpretive experimentation and, informed by integrated analysis of all available data, more robust results. These examples also illustrate efforts to ensure interpretive cohesion, confirm visual and textual themes, avoid reductionism of symbols, and honour the non-linear expression of embodied experience. Chapters 7–9 focus on novel applications of body mapping – web-based online application, virtual reality (VR), and wearable technology. Ludlow describes the development of a web-based body mapping application. She acknowledges the postphenomenological approach to understanding technology and its influence on the design, particularly the assertion that technology is part of the everyday. With an iterative design method, and in reference to literature on body mapping, a web-based body mapping application developed for the purpose of body mapping facilitator training, and to stimulate discussion regarding how real patients in a dialysis unit would create body maps on paper. Since then, the web-based application has been shared with adult outpatients at a hospital-affiliated community arts centre. Many

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authors have developed digital tools to map the body; the design created by Ludlow represents the first web-based application designed for body mapping. Translating body mapping into VR offers a new paradigm in utilising digital tools for the diagnosis, measurement, and intervention of chronic pain, synaesthesia, anxiety, and other neurological and mental health conditions. VR is already demonstrating its unique capabilities to support art creation with existing tools such as Google Tilt Brush, Quill, and Oculus Medium. In Chapter 8, Ticho details the process of developing a bespoke VR body mapping programme, enabling participants to draw in 3D in a virtual environment. The development team have worked with people with lived experience of chronic pain and anxiety to advise on the cross-modal translation of experience into bespoke drawing tools and soundscapes. VR body mapping creates new opportunities to enhance the experience, enabling opportunities to augment and manipulate illustrations using biometric data. In addition, additional research is exploring how VR body mapping may create new capabilities for storage and analysis of body maps and contribute to a new body of research around emotion visualisation. Chapter 9 focuses on wearable technology and its application to body mapping. Edwards describes the process of body mapping as a performative act. Here, an alternative performative act is presented and discussed – the wearing of immersive body maps. The idea of a wearable body map brings together several current trends in technology development, such as wearable computing, smart garments, and augmented reality, as well as blurring the line between computing infrastructures, fashion, art, and performance. Different kinds of wearable body maps may be created, depending on how these incorporate, or not, various interaction modalities. Hence, basic wearable body maps will be merely expressive. A basic body mapping app for such a context is presented. By combining this basic body mapping capability with data from other sensors, wearable body maps can be made more responsive to the environment. Once electronic sensors are incorporated, one can create more sophisticated interaction modalities, including proximal encounters with other persons and, eventually, remote encounters with larger collectives. Further, these developments may be understood in terms of an ecological framing theory, which not only directs the design process in an ethically aware manner, but offers the possibility of studying potential long-term impacts for mental health, both in terms of positive and negative outcomes. Chapter 10 describes an arts-based approach to public engagement that offers an alternative to conventional means of research dissemination. Boydell et al. describe a dissemination event that involved an installation of body maps depicting the experiences of a group of young people impacted by early psychosis who had undergone a 12-week intervention focused on their physical health. The research team partnered with curators from the National Institute of Dramatic Art (NIDA) and artist-practitioners who re-imagined, re-represented, and responded to the body maps and accompanying testimonia. Members of the university and general public community were invited to the research dissemination event and reflected on their experience via anonymous written statements generated at the installation

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and via in-depth qualitative interviews post-event. The installation provided an accessible method to expand audience reach and offered a way to understand the lived experience of psychosis and enhance mental health literacy. Respondents highlighted that the art works created in response to the body maps were often abstract and difficult to interpret and could have benefitted from including more detail about their creation. The installation provided the creation of a socially engaging space in which conversations about mental health issues can occur. Chapter 11 describes body mapping in Study 5 using a combined action research, praxis, and knowledge translation approach to create a planning guide for use by and with people with intellectual/cognitive disability and complex support needs. The combination of these theoretical and methodological approaches ensures that the final product is ‘fit for purpose’ and relevant to diverse individuals, groups, and contexts. Dew et al. begin with an explanation of why they used this approach and then proceed to detail their innovative use of this combined method and the part body mapping played in data collection, guiding production, and dissemination. They conclude with a reflection on the benefits of this approach. Trina Orchard, who published previously the only body mapping text focused on HIV/AIDS, contributes to the concluding remarks alongside editor Katherine Boydell. Together they reflect on the importance of body mapping in research and identify the possibilities for future development in the field of health research.

References Ball, S. and Gilligan, C. (2010). Visualizing migration and social division: Insights from social sciences and the visual arts. Forum: Qualitative Social Research, 11(2), Art 34. Boydell, K.M., de Jager, A., Ball, J., Curtis, J., Lappin, J., Kalucy, M., Rosenbaum, S., Tewson, A., Vaughan, P., Ward, P. and Watkins, A. (2018). Mapping a novel landscape for understanding physical and mental health: Arts-based research with youth experiencing psychosis. Art/Research International, 3(2), 236–261. Boydell, K.M., Gladstone, B.M., Volpe, T., Allemang, B., Stasiulis, E. (2012). The production and dissemination of knowledge: A scoping review of arts-based health research. Forum: Qualitative Social Research, 3(1), Art 32. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Qualitative Social Research, 17(2), Art 22.

1 APPLYING BODY MAPPING TO RESEARCH WITH MARGINALISED AND VULNERABLE GROUPS Katherine M. Boydell, Susan Collings, Angela Dew, Kate Senior, and Louisa Smith

Background Body maps are life-sized body images that are constructed by way of drawing, painting, or other techniques that represent individual’s bodies, experiences, and the worlds they live in (Gastaldo et al., 2018). Body mapping has been used in educational settings and in clinical practice to map experiences, pain, and symptoms and in community development projects to create awareness of health care issues, such as HIV/AIDS (de Jager et al., 2016). In this chapter, we enter into a conversational dialogue about what led us to engage in body mapping research, the importance of partnerships in the process, what body mapping offers in terms of working with vulnerable and marginalised groups, and in revealing hidden stories. Finally, we reflect on our respective challenges encountered while using this method. Many academics draw on forms of discourse to reflect the interactive and dialogic nature of research and writing processes. Such forms of discourse both honour and preserve the voices of others, and allow the authors to situate themselves in particular social and cultural contexts (Kirsch, 1997). Further, such novel texts reveal the multiple subject positions writers and readers often occupy, collapse boundaries between different genres of writing, and challenge traditional forms of academic discourse (that is, single-voiced, seamless research articles). In addition, multivocal texts disrupt the smooth, linear progression of argumentative and narrative forms of writing, thereby asking readers to confront multiple, at times conflicting, realities. In this chapter, we draw on Bakhtin’s (1981) concept of ‘polyphony’ (Problems 59), which literally means ‘multiple voices’, and is directly related to the idea of ‘dialogue’. Bakhtin refers to the output as a process of co-creation, co-reflection, and co-intervention, which has also been successively analysed and

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theorised by Roland Barthes where he writes that ‘a text is made up of multiple writings, drawn from many cultures and entering into mutual relations of dialogue’ (148). Following the work of Sullivan (2012), we engage in a flexible application of the dialogic method, allowing our situated subjectivity to guide our analysis. As researchers, we come from different backgrounds in terms of research and practice, and we represent diverse foci in terms of our current research agendas. We are social scientists with backgrounds in sociology and anthropology. Katherine is working in the mental health field and Angela in disability; both currently focusing on how to advance the science of arts-based knowledge translation. Louisa has a background in education and focuses on the relationship between experiences of disability across the lifecourse, complexity, social policy, and social change. Kate has extensive experience working with remote Aboriginal communities, and particularly with young people’s understandings of sexual health and relationships. Susan’s experience working both within and alongside community-based organisations that support socially marginalised groups is evident in her use of collaborative and participatory methods. Despite our diverse disciplinary backgrounds and research fields, we share a deep interest in, and commitment to, investigating method and methodology in qualitative and artsbased research and in interrogating the field and each other as learners and as thinkers.

Inspired by other colleagues KB:

So, how did we come to use body mapping in our research? I know that I was motivated by the work of Denise Gastaldo, my colleague in Toronto, who used life size body mapping to explore the experiences of undocumented workers. My first introduction to this work was in its culmination in an installation at the Toronto City Hall lobby where the body maps and their testimonios were hung from the ceiling in larger than life semitransparent gossamer silk screens. I noted that the policy makers had no choice but to engage with the installation as they made their way to the elevator banks and their respective offices. I found the awareness-raising art exhibition extremely powerful in depicting the experiences of these workers who were trying to live without a trail. AD: Katherine, I became aware of your work on body mapping anxiety experiences and you might remember that I sought your advice and guidance on adapting this method for my work in the disability field. SC: And it goes around! I was introduced to the method by Angela, with whom I was collaborating on a research project to understand how people with complex support needs and cognitive disability approach planning. LS: And I occupied the same office as Angela and Susan as they were developing their first body mapping project, and could see the potential for it to address

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some of my concerns with talking methods in some research I was doing with young people who had complex support needs. KS: And so it goes on! I met Susan through another colleague and was invited to present at a seminar on my use of body mapping with Indigenous communities, which led to a research collaboration with Louisa. KB: I think that one of the benefits of our respective forays into body mapping has been the opportunity to share our experiences of engaging in such a method and in sharing what works and what does not.

Beyond talk and text: Traversing boundaries AD:

Each of us came to use body mapping with marginalised and vulnerable groups because of our concern that traditional qualitative methods like interviews and focus groups could preclude involvement of some people – such as those with cognitive disabilities and/or complex support needs. Typically, research involving individuals with cognitive disabilities as participants has represented the voices of those who are able to clearly articulate their views. Exclusion can be intentional, through exclusion criteria, or unintentional, where methods make it difficult for people who use nonverbal communication or have more significant impairment to participate. SC: I shared these concerns about ‘talking’ approaches for understanding the experiences of people with limited verbal communication such as those with cognitive or sensory disabilities and children. I was also conscious that some experiences are hard to express, particularly when they are taboo or outside social norms. I had used photography and drawing in research to allow children to express their views, introduce their worlds, and correct the adult–child power imbalance of the interview. So, I was open to new ways of connecting with people whose stories and insights might otherwise be overlooked and saw huge potential with body mapping. LS: I concur totally. In previous qualitative research with young people with cognitive disabilities, I was confronted by the inadequacy of talk. At one point, a participant who used limited speech took me outside, got me on his quad bike, and toured me around his farm, highlighting different places of significance to him, while herding the dairy cows up to milking. After this, I knew I had to find different ways of engaging participants that were more multimodal, and potentially more meaningful, than just talking. LS: As an ethnographer, my preferred way of understanding a particular issue was to spend extended periods of time engaged in participant observation to allow a highly contextual understanding to occur. In 2010, however, I was asked to expand my work exploring the sexual decision-making of young Aboriginal and Torres Strait Islander people to communities across the Northern Territory, Western Australia, and South Australia. Participant observation simply wasn’t possible, but I still needed a method that allowed a rich insight into young

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people’s worlds. I also needed a technique that allowed young people the opportunity to speak freely about their experiences and where they felt safe from personal disclosure. Scenario-based body mapping conducted in small groups gave me this opportunity. KB: My choice of body mapping was also related to its ability to capture the embodied nature of participant experiences and meanings as well as to tell a narrative that visually depicts social, political, and economic processes. It also enables reflexive thought, as is seen in the example of one of our body mapping participants, who used the heart as a metaphor to express his vulnerability, the ‘wearing his heart on his sleeve’ was emphasised in his testimonio. This type of reflexive thought is unlikely to have been produced in a typical interview or focus group. My choice of body mapping was also influenced by my ongoing frustration with traditional academic currency, that is, peer-reviewed publication and scientific presentation, and its frequent failure to reach the audiences who need to know – the practitioners, policy makers, health consumers, and their families, and the general public at large. Consequently, my colleagues and I have turned to visual, performative, and literary strategies to create and communicate knowledge.

Partnering to build trust AD:

When we talk about using body mapping in research, we cannot fail to address the importance of partnerships. In our research, involving people with intellectual/ cognitive disability requires us to work in partnership with services that support these groups. They are identified (for example, for ethics applications) as a vulnerable group and direct recruitment is discouraged in the interests of preventing coercion to participate and/or facilitating informed consent. Services that support this group get many requests to partner with researchers and assist with recruitment. Developing a strong, ongoing partnership with services is therefore essential. Ideally, this means engaging the services and (wherever possible) people with disability themselves throughout all stages of the research. Various terms are used to describe this approach – co-design, co-production, inclusive research, participatory action research, and integrated knowledge translation.

Partnering with the services, systems, and people who will be the research end users provides a level of safety and familiarity for participants and especially those from marginalised and vulnerable groups. In Study 5, we worked with a communitybased organisation that provided support to women affected by poverty and domestic violence. The organisation assisted us to recruit women with intellectual disability who knew each other through their involvement in a parenting support group. The organisation suggested a suitable local venue and provided a worker for the body mapping sessions to help the women feel comfortable and provide backup if anyone needed a break from the body mapping activity.

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Similarly, our body mapping project with young people impacted by psychosis involved partnership with multidisciplinary artist and academic scholars from arts and design, psychiatry, psychology, exercise physiology, nursing, sociology, and anthropology. The clinic staff were very involved and even provided transportation for research participants to the body mapping venue which ensured full participation over the four-week sessions. Our consent process was processual with several opportunities built in to discuss what involvement meant and decisions made about desire for anonymity or not. The need for partnership goes beyond the creation process to include knowledge translation and dissemination. We also partnered (art-science collaboration) with the National Institute of Dramatic Arts (NIDA) staff, students, and alumni to respond to the body mapping research using their own art genres. Artist responses to an Expression of Interest were accepted and an installation of the body maps and the artists responses to the body maps was curated (this project is described in further detail in Chapter 10). We had about 150 attendees who visited the installation and our young artists, creators of the body maps, were present as well. SC: I agree that collaboration with advocates and supporters, including those within organisations, helps ensure that body mapping is a safe experience for people who may feel uncomfortable or threatened by research participation. Researchers usually sit outside of the service landscape so professional partners are a vital conduit to reaching marginalised groups. The time it takes to gain trust and buy-in cannot be underestimated. There are practical benefits, too, as they can sometimes perform the role of ‘gatekeepers’ who prevent information reaching potential participants. From a purely practical viewpoint, organisational partners often help make the body mapping process run smoothly and satisfy the requirements of institutional ethics committees that recruitment be done at ‘arms length’ from the researchers. Far more importantly, though, is the insight and wisdom partners offer about how to approach body mapping with particular groups and individuals based on their intimate knowledge of their needs. Although researchers may have funding and institutional requirements for how and where we report on our findings, as Katherine alluded to, we also have a responsibility to share what we learn with those who are most affected by our work, that is, participants and their allies and supporters. Body mapping is capable of pushing frontiers of understanding and interpreting the world and the most important breakthroughs will come after we have finished our work, perhaps in the form of changing hearts and minds or from fresh policy thinking or new funding. This means the research-to-practice partnerships have a life beyond individual projects. LS: I have always felt a deep responsibility for the impact of research I do with marginalised participants. Some young people with disabilities made it clear that I was the only person that they had talked to about certain things. Leaving these interviews, I often felt like I was abandoning them to deal with what the interview had brought up in isolation. I have found that strong

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partnerships with service providers counteracts this ‘Fly-In-Fly-Out’ phenomenon. Rather than recruit and work with participants in isolation, partners ensure that the body mapping process is conducted in the context of an existing stable and consistent relationship. This can lead to different ethical issues: researchers need to be explicit about their separation from the partners so participants don’t feel coerced, and confidentiality and anonymity might need to be tackled in different ways. Relying on partners for recruitment also means that the most vulnerable and isolated people are unlikely to take part. That said, ultimately, the strength and knowledge of partners has enabled me to engage participants in ways that they feel safe and secure and that are meaningful to them. As my colleagues have mentioned, partnerships are also important for knowledge translation, allowing us to share our expertise directly with them. With every partner with whom I collaborated, I offered a body mapping workshop, to build the capacity of partner organisations to use body mapping in their workplaces, either therapeutically or as a professional development tool. KS: Our work was conducted in a range of communities and settings, from high school health classes, to youth and young mothers groups and with interested young people from remote communities. In every case, a significant period of relationship building was necessary to build trust and ensure that people were comfortable with the method. Ethics clearance for each state and for each school were just a beginning, from the point that clearance was granted we began a period of discussion with each of the groups, including key Aboriginal community controlled health organisations. We also had discussions with the young people themselves as well as sessions for parents and carers. In terms of body map creation, we ensured we had a multidisciplinary team, including social scientists, an Indigenous health researcher, two nurses, and a clinician with expertise in sexual health. These people were essential for the feedback sessions following the body mapping exercise, as they were able to answer questions about sexual health and provide guidance about appropriate courses of action for young people.

Capturing complexity and revealing intersectional disadvantage and marginalisation KB:

One of the issues we all struggle with as scholars is the lack of critical interrogation of complexity and intersectionality. Intersectionality holds that multiple oppressions are simultaneous, inseparable, and intertwined, in a complex set of social identities. I think it would be safe to say that we all aimed to address this issue of intersectionality via the use of body mapping in our research. AD: Yes, in addition to their cognitive impairment, the group we worked with had needs related to socioeconomic disadvantage, indigeneity, gender, and

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cultural background. Participants had experienced the removal from their families in childhood, had their own children removed from their care, had been in contact with the criminal justice system, had been discriminated against in education and employment, and experienced mental illness. The body maps created by participants captured elements of these complexities and revealed intersectional disadvantage and marginalisation. It is unlikely that this group would have described, at least in quite the same way or to the same extent, these experiences and intersections during an interview or focus group. The act of visually representing aspects of their lives on the body maps, using their own body outlines as the basis from which to work, provided participants with the opportunity to focus on the topic under discussion through a creative, fun, and practical task to make an abstract representation. KB: We also found that the process of body mapping allowed participants to make explicit links between the ways in which their physical health was intricately related to their mental health, the intersection of mind and body and acknowledging that the mind/body separation is common in the mental health field. Traditionally, the body and physical health is often relegated to a back seat and body mapping allowed for an exploration of coping strategies that very much correlated with this mind/body connection. As in Angela’s experience, we found that multiple identities were reflected in the maps. SC: Body mapping allows participants to depict different aspects of their identity and reflect on past experiences and how these have shaped their lives in fresh ways. In Study 8, body mapping helped disentangle the multiplicity of adverse life experiences that had led to women having a child removed from their care. Symbolic representations of grief and trauma made possible using body mapping would not have been captured through conventional qualitative methods. Several participants drew over the top of the ‘original’ damaged heart as they told of their enduring love, depicted as a heart swollen with love, or of how support had repaired their heart by offering newfound hope. Words could not have captured this process of renewal. Indeed, the final map erased these earlier images whose traces were only present in the written testimonia. This shows the importance of involving multiple modes of communication in the body mapping process to capture complexities. LS: I agree, the linearity of speech does not allow us to really ever explain how our lives entangle and enmesh. The processes of creating a visual representation, like a body map, while at the same time explaining its layers, allow people to enact and show the layered and messy ways in which life and its meaning come about. In this way, body mapping calls us to literally show where and how things intersect. So, for example, one woman in our study of young people with complex support needs used dot painting (a technique used in some Australian Aboriginal art) as a technique in her body map. She had learnt dot painting from her Aboriginal grandmother, although she herself rarely disclosed her Aboriginality because of her fear of discrimination. Despite this usual lack of disclosure, she covered her body in these dots to represent her overwhelming love she had for her child who

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had been removed from her as a baby. In this one example, the young woman showed how her Aboriginality connected to her sense of being a powerful and strong mother, a power and strength she had inherited from her mother and her grandmother, and one which was denied by social and systemic discrimination, which led to the removal of her child. KS: Sexuality is an extremely sensitive topic and direct questioning of young people about their sexual choices and beliefs about their sexual risk is usually met with answers that are designed to be an end point of a conversation. The body mapping that we used where young people took their characters through a hypothetical scenario encouraged the participants to empathise with the character they had created and think deeply about how their character might be thinking or feeling and what other people may say or think about their character. In this way, we moved beyond a clinical or biological view of sexuality to one that was embedded within emotion and relationships.

Revealing hidden stories AD:

Our experience revealed that each individual participant approached the task of body mapping in a different way. The story making evolved over the course of the mapping exercise. The time taken to create a body map (over a couple of hours) meant that participants ‘layer up’ the content on their map – adding to, adding over, and covering up. For example, in one session, a man who had significant intellectual disability and limited verbal communication struggled to add to his map and his support worker led much of what was represented on the map. Towards the end of the session, the man selected from the table of arts materials a large piece of green silk fabric. He took this over to his map and unrolled it across his map so only the outline of his head was visible. He said ‘Now I feel safe’. This was a powerful act which spoke to the lack of control many people with intellectual/cognitive disability and complex support needs experience in their lives which are very often controlled by others in positions of authority or power. KB: We also found that this process of layering was pervasive in the body map creation. Visual images depicted on the body map were often painted or coloured over, concealing what lay beneath. We also found that in our interviews with participants following the body mapping sessions, they identified that the process of body mapping enabled a level of reflexivity that they had not previously engaged in. We often heard narratives that emphasised that they had not ever had the opportunity to reflect on or discuss the impact of the intervention under study. This resulted in the telling of a very different story. In producing visual images, our young participants had the opportunity to reflect on their experiences, over time, which is a unique characteristic of the body mapping approach, compared to research questions in interviews that demand a more immediate response.

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SC:

Body mapping lends itself to powerful forms of knowledge exchange. I am interested in how it can assist people to re-story their lives. This has potential to not only help at an individual level but to rewrite public messages about marginalised groups. In my research with women whose lives are affected by the stigma of failure and the label ‘bad mother’, body mapping provided a way to express an intact mother identity – embodied and enduring. LS: The multimodal and unique story telling that body mapping involves makes it effective at revealing stories often hidden from society, and even stories that are hidden from participants themselves. Many people from marginalised and vulnerable groups have had to tell their stories over and over again to service providers and professionals. Body mapping asks participants to tell their stories in different ways, using visual, verbal, physical, and creative processes of story telling. In doing this, participants literally draw new connections about their lives and experiences. At the end of body mapping interviews, participants have been known to want to take photos to show others and say ‘This is me’. KS: Our work using body mapping allowed insights into the complex schemas that young people used to understand their relationships and their concepts of risk within sexual relationships. Key among these was the concept of being ‘young, clean and safe’. Young people who conformed to this definition were considered to be safe partners. People who were older, who were from another community, or who did not conform (in appearance, beliefs, behaviour) were considered unsafe. In the body mapping exercise, this was consistently depicted by othering the individual who acquired a sexually transmitted infection, most notably by describing them as dirty or smelly or depicting them with large tattoos.

Facing (and overcoming) barriers to body mapping AD:

It has been a challenge to work through how to adapt the method for participants with intellectual/cognitive disability. In reality, we have needed to adapt on the day to really engage people with very different levels of ability and life experience. This represented a ‘leap of faith’ as we found no other examples where this method had been used with this group. The prior experience we had conducting research with people with intellectual/ cognitive disability was essential to our ability to adapt. Bringing together the analysis of the testimonia and the body maps to create a cohesive story that did justice to the complexity of the data was extremely difficult. Little guidance was available on how to do this, so it was ‘trial and error’ combining aspects of thematic and visual analysis techniques. KB: Asking people to participate in communicating their health issue in a more embodied and representational manner has the potential to be perceived as being too demanding, or too ‘risky’, a process that can result in uncomfortable or unexpected feelings. We acknowledged this from the outset of the body

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mapping sessions and provided an opportunity to engage in a dialogue about how people felt about this and identify strategies to address it. The act of mapping can be challenging for people, particularly when faced with tracing a body outline on a larger-than-life blank sheet of paper. We have found that decision-making is often difficult in terms of creating this outline of the body and making colour choices. We often hear that research participants are concerned about their perceptions of their creativity and artistic ability. We have found that using pre-existing images can be useful and provide people with starting points to stimulate ideas. Working on the co-created brief testimonios with participants is difficult as there is so much information in the textual and visual images that act as the ‘key’ to the body map; interestingly, when we displayed the body maps in an art installation, audience feedback indicated that viewers wanted more explanatory information about the body maps to assist in their interpretation/understanding. The logistics of using body mapping in multiple project sites can be daunting. Body maps are heavy and large. The materials used to create them are similarly cumbersome so it helps to have enough resources at your disposal to get practical help with transportation. Doing justice to the images is important but most researchers are not expert photographers and their focus is rightly on engaging participants in map creation. However, this can mean consideration of how to preserve a digital copy that can be reproduced in print quality, including for large posters, can be overlooked. In Study 5, we had to return to the original maps and rephotograph them with an SLR camera as the copies taken in situ using a tablet, though fine for analysis, were not high resolution enough for print reproduction. I can relate to Katherine’s earlier comment about the anxiety participants may experience when faced with a huge, larger than life sheet of white paper. In trying to engage in body mapping with older people with dementia, we also encountered participant anxiety about doing something new and unknown, which has been a significant obstacle. It has also been exceedingly difficult to capture and represent the complexity of the body maps in analysis and write up into journal articles. Conventional thematic coding often divides up parts of a story to look cross-sectionally (detailed in Chapter 5), rather than look holistically at the way one particular image or symbol is built or overlayed with another. As Angela and Susan have noted, we have also addressed the tendency of traditional thematic analysis, with its emphasis on identifying repeated patterns of meaning, which also tends to fracture the story, thus jeopardising the entirety of the narrative. We have countered this by also including a narrative analysis as well as a thematic one, so that the more holistic story can be told. The body mapping approach was extremely well accepted by the young people involved in our studies and we found little that was actually challenging. Occasionally, we had problems when people (usually teachers who were required to be present in sessions conducted during school time) intervened or questioned what young people were depicting on their maps.

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An important issue that emerged was the tendency for young people to attempt to distance themselves from characters and stories where the young person had a sexually transmitted infection (STI). This is not surprising given the high level of stigma involved with getting a sexually transmitted infection coupled with the perception that it was only young people who broke the rules who were at risk. Narratives were often highly sensationalised and emphasised the worst possible consequences of a decision. Happy and consenting relationships were rarely discussed. We addressed this issue by incorporating more time for character development into our technique, and found that the more the young people related to their character the more likely they were to try and care for them and protect them.

Discussion We have been inspired by each other’s work and that of other pioneering scholars who have used body mapping in research to address the limitations of talk and text. Our collective concern with traditional qualitative methods and their (in) ability to convey experiences of vulnerable and marginalised groups has led to our desire to explore the visual, performative, and literary. Previous research in this space has demonstrated the potential for community development and policy change (Boydell et al., 2018). The evidence base demonstrates that research participants engaged in body mapping report it to be more flexible than other research they had been involved in, and found it an enjoyable opportunity to reflect on their experiences (Boydell 2018; de Jager 2017). We concur that the process of body mapping addresses many of the limitations of conventional qualitative methods questionnaire methods in gathering data about experiences (Tarr & Thomas, 2011). As a group, we resist methodological simplicity and respond to the call to challenge simplistic and mechanistic approaches to qualitative research that preclude dense and multilayered treatment of data (Mazzei & Jackson, 2012). We have identified the critical need for meaningful partnerships in successful body mapping research. These partnerships are built on trust which is developed over time so that partner organisations are prepared to assist with recruitment of participants and provide a sense of continuity and familiarity for participants. Partners are also essential in ensuring knowledge translation so that those who are most interested in the research outcomes learn about them. We have all engaged in body mapping with marginalised groups and found the method to be particularly beneficial in addressing complexity, revealing the invisible and often not talked about issues, and for addressing intersectionality across multiple domains. The common challenges each of us faced in our body mapping studies included: (1) the need to adapt the method for different groups of participants and for varying times; (2) the co-creation of the testimonias – bringing together the textual and the visual and doing justice to the complexity of the maps in a very brief text; (3) the potential anxiety incurred by research participants when

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faced with creating a life size body map; and (4) fracturing data and representing complexity. We look forward to moving forward with our work focused on advancing body mapping research and look forward to collaboratively continuing to identify strategies to mitigate these challenges.

References Bakhtin, M.M. (1981). The dialogic imagination. Translated by Caryl Emerson and Michael Holquist. Austin: University of Texas Press. Problems of Dostoevsky’s Poetics. Translated by Caryl Emerson. Boydell, K.M., de Jager, A., Ball, J., Curtis, J., Lappin, J., Kalucy, M., Rosenbaum, S., Tewson, A., Vaughan, P., Ward, P. and Watkins, A. (2018). Mapping a novel landscape for understanding physical and mental health: Arts-based research with youth experiencing psychosis. Art/Research International, 3(2), 236–261. Boydell, K.M., Dew, A., Hodgins, M., Bundy, A., Gallego, G., Iljadica, A., Lincoln, M., Pignatiello, A., Teshima, J. and Willis, D. (2017). How can researchers and policy makers work together? Deliberative dialogues in Canada and Australia. Journal of Disability Policy Studies. First published May 9, 2017. doi:10.1177/1044207317694840. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforschung/ Forum: Qualitative Social Research, 17(2), Art. 22. https://www.qualitative-research.net/ index.php/fqs/article/view/2526. de Jager, A., Tewson, A., Vaughan, P., Fogarty, A. and Boydell, K.M. (2017). Digital storytelling in research: A systematic review. The Qualitative Report, 22(10). http:// nsuworks.nova.edu/tqr/vol22/iss10/3/. Gastaldo, D., Rivas-Quarneti, N. and Magalhaes, L. (2018). Body-map storytelling as a health research methodology: Blurred lines creating clear pictures. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 19(2). http://www.qualitativeresearch.net/index.php/fqs/article/view/2858 [Accessed: July 22, 2019]. doi:http:// dx.doi.org/10.17169/fqs-19.2.2858. Kirsch, G. (1997). Multi-vocal texts and interpretive responsibility. College English, 59(2), 191–202. Mazzei, L. and Jackson, A.Y. (2012). Complicating voice in a refusal to “let participants speak for themselves.” Qualitative Inquiry, 18(9), 745–751. Sullivan, P. (2012). Qualitative data analysis using a dialogical approach. London: Sage. Tarr, J. and Thomas, H. (2011). Mapping embodiment: Methodologies for representing pain and injury. Qualitative Research, 11(2), 141–157.

2 MAPPING CONVERSATIONS Body maps as relational objects in groups and dialogues Louisa Smith and Kate Senior

Introduction Body mapping is often described as ‘storying the self’ (de Jager et al., 2016) implying that it is a method that is able to tap into personal and private worlds of the individual and their body. In this chapter, we explore the potential of the body map to generate a group conversation about a range of potentially sensitive issues, such as sexuality and safety. We argue that this method has considerable application with young people, as it enables them to enter into different kinds of conversations in social and relational contexts that are familiar. We argue that supported by the construction of a visual representation, young people can talk through different versions of themselves and others. We draw from two examples. Senior and Chenhall’s work asked groups of young people to create hypothetical body maps to explore sexual decision-making and risk with young people from regional, rural, and remote settings in Northern Australia (Chenhall et al., 2013; Senior & Chenhall, 2017). Smith and Dowse (2019) used more traditional oneon-one body maps with young people with complex support needs, but the group context in which these maps were made meant that they instigated important conversations and became relational objects.

The Our Lives (Senior and Chenhall 2011–2017) study Our Lives, Culture, Context and Risk (Our Lives) explored young people’s sexual decision-making, relationships, and concepts of risk in communities in the Northern Territory, Western Australia, and South Australia (Appendix 1, Study 1). It included both Aboriginal and non-Aboriginal youth from large urban centres (such as Darwin and Alice Springs), regional towns (such as Broome), and remote Aboriginal communities. The chief investigators are both anthropologists, experienced in working

Mapping conversations 19

with young people in the context of their daily lives, work that requires significant investment of time and deep immersion in a particular community. This study, however, was multi-sited and opportunities to engage with young people were very limited, for example, much of our contact was through schools and sessions would be confined to a 2-hour time slot. We were keen to use techniques that offered us ethnographic richness and an opportunity to engage sensitively with young people’s stories, but which could be conducted in a rapid fashion. In a climate of mandatory reporting for underage sexual relationships, we were also committed to protecting young people from disclosure. For these reasons, we developed a method which used hypothetical stories as a basis for a group body mapping activity. Young people would read a simple story about a relationship, decide which person in the relationship they wanted to tell the story of and illustrate that person’s decisions, thoughts, feelings, and reactions on their body map. The hypothetical body map and the conversation around it meant young people could discuss highly sensitive issues, such as what people may think of someone who contracted an STI or got pregnant, while still protecting themselves from potential stigma and shame in the conversation. As a result, this study was able to obtain deep insights into young people’s sexual decision-making and the role of stigma in their understanding of sexual health and relationships (Senior et al., 2014) which would not have been possible through conventional approaches such as interviewing.

Lost in Transition (2016–2019) Lost in Transition: Supporting young people with complex support needs study explored young people’s experience of complex support needs and what kinds of supports they needed in the Australian states of NSW, Queensland, and Victoria (Appendix 1, Study 7). Louisa worked with an advisory group of young people who were experts by experience to develop the methodological approach for the study. Although the research team had planned to do one-on-one interviews due to the sensitive nature of the material, the advisory group suggested that for some young people being in a group would facilitate safety, they also suggested that we give participants a choice of different kinds of methods. In the end, 12 young people chose to do their body maps in groups. Importantly, when participants did choose to work in a group, they did so in groups of people they already knew and had been working with for some time (for further exploration of the methodology of this study, see Dew et al., 2018). While unlike Kate’s study, in that young people were still representing their own individual stories in a group context, the body maps still provided an important start to different kinds of conversations.

Collecting around sensitive issues and complexity The body maps become physical places on and around which young people could collect their ideas and share particular pathways through a story. Watching young people and their supporters crowd around a body map indicating and explaining

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certain journeys through it is very similar to watching a group in the bush navigating with a topographical map. In both examples, the capacity for groups of people to collect around the map physically, allows for young people and their supporters to collect around purposeful conversations around alternative pathways and potentially dangerous moments. In Kate’s study, the young people took the body on a journey through the story of a relationship. They were able to make their story as complex as they wanted, but they also had to work as a group to work out viable solutions for their character and the ways to support their character. Most often young people chose to work in groups of their own gender and to create characters who were the same gender. Usually, however, the groups were very aware of the bodies that other groups in the room were creating and this also provided opportunities for discussion and sharing of ideas. For example, a young man overhearing a story about a young woman in a violent relationship offered the opinion that young women could also manipulate relationships and that young men were particularly vulnerable to emotional violence. He and his group then added this story to their own body map. At the end of each body mapping session, participants introduced their character to the larger group and discussed what had happened to them. The group were then encouraged to think about these stories and discuss issues such as ‘what would you say to a friend in this situation’, ‘who should this person ask for help?’, and ‘what sort of supports are available to this person?’. Although in Louisa’s study the maps were intended to be one-on-one, most participants wanted to share and talk about their maps after their creation with others beyond the researchers. Participants took photos with their phones and sent them to family, friends, and support workers, but they also went as far as ringing people and asking them to come to where we were making the map so they could see it. In many of these cases, this was about having a complex and often hidden story seen and recognised by others (Smith & Dowse, 2019). As one participant explained, ‘I’ve never told the whole story in one place like this. I want him [boyfriend] to see the whole thing’. When the boyfriend did arrive, the participant, her boyfriend, and her support worker all sat on a couch together in silence looking at the map for what felt like a long time; eventually, the boyfriend said, ‘It’s so big’, the participant moved closer to him and said, ‘I know, there was so much to get onto it’, and then she guided him through each part. Although the boyfriend knew the story, the participant seemed particularly moved by his capacity to ‘see’ its enormity. After the boyfriend had left, she said, ‘I’ve never got to tell the story like that before, all together. It’s never made sense’. Particularly in the context, the maps were being made in a group setting, participants invited others in the group to stand around the map while they explained the story they represented. Interestingly, these conversations were often characterised by strength and gratitude. Some participants wanted to share their maps because they wanted to show support workers and other members of the group how important they had been to them. For example, one participant

Mapping conversations 21

collected the group around her and showed how she had drawn the support worker on a jetty throwing her a lifebuoy and all of the other young people in the group helping pull her out of the water.

The construction of a multilayered narrative As has been discussed elsewhere in this book, body mapping allows for a multimodal form of storytelling. Doing and sharing body maps in a group adds another layer to the conversation, an ethnographic window, which has the potential to deepen body mapping research. In Kate’s study, as in a focus group, the group body mapping technique allowed researchers to see the effects of group dynamics and how the group worked together to create their story. The group method also provided the space for discordant voices, for disagreement and consensus building. Unlike a focus group, where the data are usually only oral, the body maps provided a place for these dynamics of conversation to be also recorded visually. For example, in the Our Lives study, a group of young men created the character of Dylan on their body map. In their hypothetical map, Dylan meets a young woman after a concert, they have sex and then they never see each other again. The young men drew Dylan as ‘cool’ with rippling stomach muscles and fashionable sun-glasses, he has the initials D.T.F. ‘down to fuck’ emblazoned on his stomach. He is surrounded by broken hearts of all the other women he has been with. At one point, a young man in the group questions Dylan’s values and what he sees as lack of respect for women. He wrote ‘no respect’ in capitals down Dylan’s leg. This is immediately countered by the other young men in the group who wrote ‘I do what I want’ asserting the dominant view that Dylan’s behaviour was expected and appropriate from their point of view. This interaction provided us with insights into gendered roles that young men brought to their understanding of relationships. Louisa found the freedom of expression encouraged in the body mapping sessions fostered particularly unexpected, contradictory, and wild conversations that were far outside the purview of the topic – much as Kate describes previously. As a former high school teacher, Louisa had to resist her inclination to lock down these conversations and move the participants onto task. Instead, these group conversations which were usually at the beginning of the body mapping session ranged from Pókemon Go to a recent night out to how someone’s sister was going. These group conversations were a form of orientation. They allowed the young people to establish the space as their own, and not the researchers. One group even explained at the end of the body mapping session that those early conversations had been a kind of test: PARTICIPANT 1:

You were worried at first, weren’t you? We were just checking your bullshit radar. PARTICIPANT 3: Luckily you over-disclosed so we knew you were all right. PARTICIPANT 2:

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These conversations between members of the group also allowed them to pull in and out of the intensity of working one-on-one with the body map and a researcher. They would stroll around, make jokes, throw things at one another, but also ask for help. At one point, one participant took a break and went and sat with her support worker. At the start of the session, she had been talking about her sister, during her break she went and asked her support worker for help around her sister: ‘Doing this makes me see that things have worked better when I ask for help’.

A place to test ideas The hypothetical bodies in Kate’s study provided young people a safe place to test ideas about issues which were often highly stigmatised such as becoming pregnant, getting a sexually transmitted infection, or being the victim of sexual violence. The groups could decide to take their character to a clinic, to talk to a school counsellor, to leave a relationship, or attend a youth focussed service such as headspace without having necessarily experienced any of these situations. They could discuss how their character might be feeling during these decisions and interactions, and in doing so destigmatise some of the situations by bringing them out into the open. The group focus meant that not only could the group test ideas they could also experiment with how their peers responded to the ideas that were created. For example, in Kate’s study, the young people were keen to explore sexualities (although no individual participants talked about being homosexual, many of the characters in the body maps were gay, lesbian, or gender fluid). The body maps become an important way to talk about issues that may have been oppressed by dominant sexualities in the everyday interactions of young people and for young people to challenge some of the assumptions that their groups may have had. One group of young men, for example, created a gay character. At the outset of their story telling, the group attempted to distance themselves from their character, presenting him as ‘different’ to them and using stereotypical labelling to describe him. But as they began to think seriously about their character, members of the group began to challenge this language and began to construct a very different story. Their final story was one of their character’s unhappy childhood characterised by the lack of understanding of his parents and bullying from his peers. They constructed a story where their character was able to come out in safety and enter a supportive relationship.

Becoming a researcher: a place to ask questions Being an external representation, the body map literally made objective the concerns young people had, thereby facilitating them to ask questions. In the Our Lives study, which was underscored by very rudimentary sexual education and therefore significant gaps in young people’s knowledge, the body mapping

Mapping conversations 23

exercise provided a safe environment to ask questions. For example, in one of the body mapping exercises, the character thinks that she may be pregnant and the young women discuss what her options might be: YOUNG WOMAN:

Well she could just be clever and have a hot bath afterwards. Nah, that won’t work. Miss (to the facilitator) what should she do? (Senior & Chenhall, 2017, p. 112).

OTHER YOUNG WOMEN:

Similarly, in the Lost in Transition study, body mapping in a group allowed people to ask particular kinds of questions. The capacity for the body map to provide a place for questions was particularly stark in groups of young people with intellectual disabilities. People with intellectual disabilities, particularly those with compounding forms of disadvantage, don’t often get to be the one’s asking questions and having choice and control. Doing body maps about transitions in their lives, one group of young people with intellectual disabilities who were doing a program to support them into employment struggled to find changes that they wanted to map. In the group discussion at the beginning of the body mapping session, one of the participants asked, ‘Why can’t I find good work and leave here?’. This question was repeated by two of the other participants when they did their body maps. None of these participants mapped anything to do with work but creating the body map about a positive change in their lives allowed them to ask questions about why transition to work was not such a positive one. At the end of the body mapping session, one of the participants approached the person who ran the program and asked why he had to work in a factory.

Educational potential Body maps which are produced by groups or discussed by groups have significant potential as an educational resource. Instead of being a one-off intervention, the bodies could be re-visited at various points (for example, during a school term) so that young people could incorporate new knowledge, new questions, and new stories on to their maps. The body mapping technique developed through the culture, context, and risk project was formalised into an educational resource, the Life Happens Game. Life Happens retained the scenario-based body mapping approach, but supplemented these with a range of Life cards. These cards could be negative (condom breaks), positive (happy in love), or neutral (got a new job). Participants had to incorporate three randomly allocated life cards into their final story. The life cards reinforce the idea that ‘life just happens’ and the job of the participants is to support their character not stigmatise them or blame them. This project focussed on ways to decrease stigma and increase empathy of young people when they explored their hypothetical relationships. This was achieved by attention to the body they created as a person. Senior et al. (2018) found that the more time that the participants devoted to considering, discussing, and then depicting their person (from their appearance right though to their hobbies) the

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more likely they were to empathise with them and work towards developing an outcome which supported their character.

Limitations As with all focus group type methods, the group body mapping method may be limited by the tendency of more dominant voices to be both heard and visually depicted (Laimputtong & Ezzy, 2007). Active facilitation may mitigate these issues, with the facilitator encouraging less forthcoming individuals to participate. The activity of body mapping is helpful in this regard, as more reluctant individuals can be encouraged to take of parts of the task that they feel comfortable with such as ‘could you draw your character’s eyes or hair- what colour should they be?’ and gradually build their confidence to participate. The group body map cannot delve into the complexities of each individual’s experience (as might be possible in a carefully constructed in depth interview, or from extensive ethnographic engagement). This characteristic, however, may be the key strength of the method, as it protects the individual from disclosure and allows them to reveal as much information as is acceptable to the group. The opportunity for people to develop a rapport with the character that they create is another key strength of this method and indeed Senior et al. (2018) found that the time given to character building equated to level of empathy that the group had for the individual they created. Sometimes, however, this rapport can present challenges, for example, one group in Senior’s study created the character of Steve, who has kaleidoscopic eyes and a chiselled chin. When asked to take Steve through the hypothetical story, a member of the group responded: ‘We can’t do that to him, he’s too nice, we just want to look after him’. In another example, a group of young women created a character who they decided was in a lesbian relationship. One of the group members was outside the room when this decision was made. On her return, she started to depict the character’s hair in intricate detail. When she found out, however, that the character was in a relationship with another girl, she stormed out of the room saying, ‘I just can’t cope with that’. The vehemence of her response appeared to be generated by her perception that she had invested energy in the depiction of a person who turned out to be different from what she had expected.

Conclusion When a body map is created by a group or used in group discussion, it becomes not only a relational object but also a physical place to navigate ideas and create new questions. In one sense, it becomes another person in the room who can be discussed. In Kate’s studies, these people are hypothetical and allow young people to engage in particular ways. Although not real, they are real enough that they become a vessel which accommodates key behaviours and qualities of the young people involved in its creation. But this ‘person’ also has the quality of

Mapping conversations 25

being immune to stigma and judgement so that young people can use them to experiment and test ideas that may be very difficult to engage with (for example, discussions about sexuality). In Louisa’s study, the body maps while representations of themselves are still externalised in ways that allow young people to talk about themselves and their stories to others in new and gratifying ways. In keeping with the ethos of youth friendly approaches (Best, 2007), the body mapping projects described previously privileged young people’s interpretations and gave them considerable licence to take the research project in the direction that they chose. It is important to note that young people’s priorities were not necessarily aligned to those of the research question or intervention, but that body mapping allowed young people the flexibility and scope to make the research meaningful. In this way, the body mapping process resembles an ethnographic approach where there is an emphasis on building relationships and allowing stories to emerge in the ways in which participants feel most comfortable. Body mapping can provide an important ethnographic window into the worlds of otherwise difficult to reach groups and provides a medium to explore and ask difficult or sensitive questions. The involvement of groups in the process allows researchers to explore decision-making in action and to consider how the newly created body is understood by their peers. The group body map not only allows young people to explore other ways of being, but also to experience how their peers respond to this way of being. The approaches we have described in this chapter extend the body map from a representation of the individual body-self to a social body (ScheperHughes & Lock, 1987) and in doing so we move from an approach that may be considered therapeutic (understanding of one’s self ) to ethnographic, the understanding of a body within society and culture.

References Best, A.L. (Ed.) (2007). Representing youth: Methodological issues in critical youth studies. New York: NYU Press. Chenhall, R., Davison, B., Fitz, J., Pearse, T. and Senior, K. (2013). Engaging youth in sexual health research: Refining a youth friendly method in the Northern Territory of Australia. Visual Anthropology Review, 29(2), 123–132. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body mapping. Forum Qualitative Social Research, 17(2). https://www.qualitative-research.net/index.php/fqs/article/view/2526. Dew, A., Smith. L., Collings, S. and Dillon-Savage, I. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum: Qualitative Social Research. https://www.qualitative-research.net/index.php/fqs/article/view/2929. Liamputtong, P. and Ezzy, D. (2007). Qualitative research methods (2nd Edition). Melbourne: Oxford University Press. Scheper-Hughes, N. and Lock, M.M. (1987). The mindful body: A prolegomenon to future work in medical anthropology. Medical Anthropology Quarterly, 1(1), 6–14. Senior, K. and Chenhall, R. (2017). More than “just learning about the organs”, embodied story telling as a basis for learning about sex and relationships. In L. Allen and

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M.L. Rasmussen (Eds.), The Palgrave handbook of sexuality education (pp. 95–114). London: Palgrave Macmillan. Senior, K., Grozdanovski, L., Chenhall, R. and Minton, S. (2018). Our lives and life happens: From stigma to empathy in young people’s depictions of sexual health and relationships. Journal of Applied Arts and Health, 9(1). Smith, L. and Dowse, L. (2019). Times during transition for young people with complex support needs: Entangled critical moments, static liminal periods and contingent meaning making times. Journal of Youth Studies. https://doi.org/10.1080/13676261. 2019.1575346.

3 REPRESENTATIONS OF COMPLEX TRAUMA Body maps as a narrative mosaic Susan Collings and Louisa Smith

Background Many uses of body mapping in research today can be traced to its earliest appli­ cations at the intersections of therapy, community health, and advocacy. Almost two decades ago, body mapping as art therapy made an appearance in South Africa, where women living with HIV/AIDS created body maps to preserve stories as keepsakes for loved ones, and their maps were subsequently used in advocacy campaigns to raise community awareness (Solomon, 2007). Recognition of its powerful potential as a storytelling device led to use in qualitative health research with undocumented migrant workers in Canada, culminating in the production of a handbook (Gastaldo et al., 2012). A growing number of research applications across social, Indigenous, and health contexts attest to its versatility and relevance (de Jager et al., 2016). As discussed in Chapter 2, the ability of body mapping to convey personal narratives that reveal situated knowledge of social, cultural, and political conditions makes it a useful approach to understand the experiences of marginalised groups. This is particularly the case because of the ways in which body mapping research literally centres on the embodiment of the participant’s experience. According to phenomenology, all experience is fundamentally embodied because it is through the body that the subject acquires knowledge (Merleau-Ponty, 1982). The process of body mapping encourages individuals to reflect on their past and represent personal experiences. This contemplation facilitates access to situated bodily knowledges.

Complex trauma, childhood, and embodiment The human stress response is a set of complex psychophysiological processes ac­ tivated in the brain in the presence of a threat, commonly known as the ‘fight-or-

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flight’ response (Everly & Lating, 2019). Stress responses can become dysregulated in the event of ongoing stress, such as child abuse and neglect (Szilagyi, 2018). A widely accepted definition of trauma states that ‘Individual trauma results from an event, series of events or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional or spiritual wellbeing’ (SAMHSA, 2014, p. 7). Complex trauma refers to the impact of exposure to multiple or prolonged traumatic events that are interpersonal in nature (McLean, 2016). Stressors are most serious when they occur in childhood because they interfere with typical devel­ opment (van der Kolk, 2015). Complex trauma symptoms include problems with mood regulation, impulse control, self-perception, attention, memory, and somatic disorders (Wall et al., 2016). These symptoms are residues of the body’s attempts to survive a threat that is no longer present but which the body remembers. While abuse and neglect are major causes of complex childhood trauma, the loss of parents is ‘the most significant trauma any child can suffer’ (Szilagyi, 2018, p. 3). As a result, adults who have experienced statutory care inevitably carry the effects of complex trauma. Historical trauma, the cumulative and collective ex­ perience of trauma over generations for specific populations, can result in children showing signs of traumatic stress without individual exposure (Child Welfare Information Gateway, 2015). In the Australian context, it is critical to recognise that colonisation has caused the systemic dispossession of Indigenous peoples from traditional lands and ways of being, and the damage inflicted by discriminatory policies such as the forced removal of children from family and community has caused trauma that is transmitted intergenerationally. This is described as ‘the subjective experiencing and remembering of events in the mind of an individual or the life of community, passed from adults to children in cyclic processes as “cumulative emotional and psychological wounding” ’ (Mu’id, 2004, p. 9 cited in Atkinson, 2013). This reminds us of the diffuse impact of trauma which is felt by those whose lives are interconnected with the person who experienced it.

Complex trauma and the map of the world Complex trauma is embodied not only in physical symptoms such as numbing, flashbacks, and dissociation but also by the creation of an internal map which structures the world as either safe or dangerous and which remains ‘remarkably stable over time’ (van der Kolk, 2015, p. 129). In other words, complex trauma results in people making sense of the world by creating very strong and fixed maps/ideas/schemas about it. Because trauma responses do not operate at the level of the conscious or rational brain, making changes to the internal map takes a reorganisation in the central nervous system. In essence, complex trauma becomes integral to how a person experiences the world. With the effects that are profound and long term, childhood trauma often leads to a range of overlapping issues in adulthood related to poor health and disability,

Representations of complex trauma

29

social isolation, and interpersonal violence. Complex support needs are likely to span multiple life domains and lead to high levels of need in multiple areas (Rankin & Regan, 2004). Services and systems that are diagnosis driven and operate in silos fail to attend to needs holistically, which can compound complexity (Collings et al., 2016). People living with the effects of complex trauma are likely to encounter multiple systems and services in ad hoc ways or at critical life transition points (Smith & Dowse, 2019a). They will tell their story many times to satisfy entry conditions and assessment processes (Department of Human Services [DHS], 2002). Therapy often encourages trauma survivors to find words to describe what happened which can be transformative but may not resolve the underlying trauma, which can be triggered by interactions and relationships (van der Kolk, 2015, p. 128). As a profoundly embodied experience, complex trauma will appear in body maps in many ways – perhaps as a signifier of survival, a trace element, a scar or wound. We reflect on our learnings from supportive engagement with research participants who represent complex trauma on body maps using examples from two projects (Studies 7 and 8).

Narrative mosaics of trauma Trauma is not stored as a coherent narrative with a beginning, middle, and end (van der Kolk, 2015, p. 135). For instance, the stories told by Holocaust survivors are described as a ‘mosaic’ of ‘permanently unfinished tales full of incomplete intervals’ (Langer, 1991, cited in van der Kolk, 2015, p. 195). Drawing maps in real-time reconnects individuals to their personal stories as a form of visual ex­ pression. The physical act of placing images on paper while articulating their meaning and significance invites unexpected connections to be made between past events. It can liberate individuals from the conventions of narrative form by al­ lowing them to create multiple sites of meaning and signify different time points simultaneously. We saw that this takes place several times in our research. In Study 8, Susan worked with several participants who created multilayered faces and hearts to capture emotions at different times of their lives. Research shows that statutory child removal can be a form of system-induced trauma for parents (Hinton, 2018). Most mothers had lost several children to the care system and/or been in care themselves. The long shadow of past trauma was echoed in more recent encounters with child protection systems and children’s carers. Parents recalled significant life events and were able to capture dynamic emotional states by drawing or placing images over those already there, overcoming the physical limits imposed by the body map. There were faces that simultaneously expressed seemingly conflicting emotions such as joy, sorrow, confusion, grief, and rage, which were described at different points during body mapping (Figure 3.1). One woman drew a red heart shape broken in two to depict grief over losing her child and later scribbled over it to demonstrate the violence in­ flicted on her by child protection workers. She then drew an intact black heart shape within which she placed cut-out words ‘I love you, Mum’ to depict the

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FIGURE 3.1

Transgressing the limits of the body map

unbreakable mother–child bond (Figure 3.2). Body mapping equipped these women to break free of the logic of temporal storytelling that an interview conversation would have imposed and to transgress the body map as a twodimensional form.

FIGURE 3.2

Process of reinscribing maternal love and loss

Representations of complex trauma

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In Study 7, Louisa worked with three transsexual young people with complex support needs to articulate silences in their lives and re-story their bodies using their body maps. Transsexual young people have higher risks of suicide and mental illness due to discrimination, transphobia, and inability to access tailored supports (Bockting, 2014). Unsurprisingly, given the salience of the body in the trauma experienced by many trans young people, trans participants had mixed feelings about body mapping. One participant started by mapping only his feet and hands, another initially wanted to just have an interview, and a third leapt onto the piece of art paper to show her excitement about mapping her ‘new’ body. In the end, these participants all created body maps. One young person paused halfway through the process and, announcing she wanted to start again, covered the entire torso of her map with a second piece of paper on which she drew a dollar symbol. She then cut the paper to reveal an image of her rainbow ‘trans heart’ on the map underneath. She verbally explained that, even though she had a trans heart un­ derneath, she would not feel like she had a body until she had saved enough money to complete the necessary medical procedures. Similarly, a trans man re­ presented the silences around his gender identity and his difficulty expressing it by writing jumbled words in his brain and jagged lines over his mouth and then covering it with a blank piece of paper to show how trapped and stuck the words would get when he tried to explain. Body maps allowed these participants to capture the embodied feelings of being unseen and unheard by physically showing what happened during these processes. Creating a body map allowed participants to enact their experience of the body as disembodied, contradictory, and absented from roles and positions they desire. As the discussion of how participants represent complex trauma on body map makes clear, it is time to depart from a reliance on verbal storytelling to allow different stories to be heard. In the child welfare sphere, mothers have been de­ scribed as being ‘written out of history, ghosts to us, their voices lost’ (McGhee & Waterhouse, 2017, p. 1653). Conventional qualitative research methods such as interviews and focus groups privilege the voice as the medium to convey ex­ perience and assume that ‘knowledge is reducible to language’ (Bagnoli, 2009, p. 547). In contrast, visual methods reduce reliance on verbal communication and offer an avenue for nonverbal storytelling (Aldridge, 2012). Given that participants with complex trauma backgrounds are more likely to tell stories that resemble a ‘mosaic’ than a coherent narrative, meaning can only really be conveyed by vi­ sually representing the discontinuity and rupture as reassembled fragments. When participants find ways to represent their embodied experience as multidimensional and nonlinear, they get under the metaphorical skin of the body maps. In the process, a new form of storying of the self becomes possible.

Making visible the wounded child The body mapping process enables individuals to reconnect with aspects of their history that remained hidden or silenced. The process aspect of body mapping

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resonates with earlier applications of the method in art therapy by allowing the person to externalise their ‘wounded’ child (Jung, 1991) and trace fragments of that child as it reappeared over the course of their lives. The body maps serve as a visual record of the meaning making process and a reminder that childhood trauma can leave a lasting residue. Body mapping, as a process and a product, may allow adults with unresolved complex trauma to explain themselves to the world around them and may permit those in their lives, including services they interact with, to recognise the reactions of a traumatised child in the person they encounter. In Study 8, the body mapping process itself helped participants connect to and find expression for a range of complicated emotions and many women expressed surprise and pride in their maps and remarked that the uninterrupted time spent in reflection on the past had left them with a sense of lightness. The maps depicted layers of historic trauma and revealed a pattern of difficult, often violent, inter­ personal relationships, and childhood adversity. Most of the 12 participants in the study had experienced abuse or neglect as children, six had been in care, and eight identified as Aboriginal. Adverse childhood experiences were touched on in passing, often to justify difficulties with parenting or explain trust issues, but the embodied impact on them became evident as they mapped their response to having their own child removed. A young Aboriginal woman with a history of abusive and fractured relationships placed an image of a cactus inside the stomach area of the body map to symbolise her inability to trust people. This was followed by an account of hiding inside her flat so authorities could not take her baby and fleeing on foot when the police arrived. She depicted this on her map with red and blue lights to represent the sirens and violent yellow lightning bolts to re­ present her anger. In a powerful reminder that complex trauma demands physical expression, she scrawled squiggly lines in thick black pen across her map and wrote the words ‘angry’, ‘fired up’, and ‘hurt’ to represent learning to deal with emotions by writing her feelings down instead of self-harming. Irrespective of how much time had passed since their child was removed, this event remained a pivotal life transition. Many participants described that day in detail, as if it had been recited many times, and returned to add further details throughout the body mapping process but were unable to express their emotions verbally, preferring to find the best images to represent them visually. Shock was represented as a lightbulb, anger as a ‘timebomb’, and images of self-harm, depression, and suicidal thoughts were depicted. One woman recounted packing her child’s bag and favourite teddy the day she was removed, but said that she felt nothing and, clutching a handful of coloured pens over a blank body map, talked matter-of-factly for an hour about deeply painful, violent, and traumatic life ex­ periences. Finally, as she began to experiment with drawing, we observed that speech was replaced with creative expression, including the use of various mate­ rials to create an idyllic scene of herself and daughter frolicking in the sea (Figure 3.3). Surveying her body map with pride, she remarked that she had forgotten how much she enjoyed craft as a little girl and that it was something she

Representations of complex trauma

FIGURE 3.3

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Depicting the impact of emotional violence

was told she was good at. Body mapping had interrupted the emotional numbing she lived with by reconnecting her to embodied memories of mastery and al­ lowing her to express her hopes for the future visually. Few of these women had received counselling or formal support after the loss of their child and many lacked social supports. Experiences with caseworkers before and after their child was removed were largely negative and represented in images that conveyed powerlessness and judgment. One woman placed an image of a foot stamping on the stomach area of the body map, another drew a dagger protruding from the shoulder and an open hand covering half the face area, saying she had felt ‘slapped across the face’ when workers said she could not care for her child because she had been in care herself. Healing was also possible when women felt they were treated with compassion and empathy by carers and caseworkers. For example, one participant placed the word ‘family’ in the centre of a circle of coloured balls to symbolise the new blended family she and the carers had created together (Figure 3.4) and another placed images of angels on her shoulders to represent carers and caseworkers who treated her with empathy and compassion.

FIGURE 3.4

Use of various craft materials

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In Study 7, young people were supported to choose a significant change or transition in their lives to body map. For those young people who had experi­ enced trauma in their early childhoods – such as being removed from a parents’ care – it was usually very early transition that they chose to map. For example, two young people mapped being removed from the care of their parent/s at the ages of 6 and 8. Rather than tracing his own tall adult body, one young man chose to draw the small child he was then. The smallness of the body in the map was very important for the man to see and reflect on how much he had dealt with at such a small age: ‘I was so little’ he said looking at the body map. Although he talked about the violence, abuse, and neglect by his mother, which he explained had caused his cognitive impairment, almost as an act of resistance he did not draw his mother on this body map. Instead, he drew the positive physical experience of being removed from her: a huge shield to represent his aunt who had protected him and a tropical island in his mind to show his relief. When this man told his story, he focussed on violence, abuse, and neglect in his childhood and mapped this through to his current experiences, but his body map allowed him to literally see the boy he was and to recognise the strength in him. Young people who drew body maps of critical moments during childhoods drew visceral memories of how their bodies felt during these times. For example, some young people depicted numbness by drawing squiggly lines around their bodies, emptiness and loneliness were represented by leaving the area within their body maps blank, and some people drew physical scars on their bodies to show the different kinds of violence and neglect they experienced and the pain that still remained. Importantly, young people who drew themselves as children often used the act of drawing and painting to respond to Louisa’s prompts or questions; rather than telling her what they experienced, they would draw it and only explain later. It was as though the body mapping process gave them a way of articulating their experience in ways that words would not. At the end of these sessions, young people often stood back and were surprised and pleased at what they had created: ‘I usually try to push that away … but it helps me to see a way to connect’ one young man reflected as he talked about his foster siblings who had been removed.

Implications for research The capacity for body mapping to allow research participants with complex trauma to see themselves in new and unexpected ways means that researchers have particular responsibilities to consider in working with these participants. As dis­ cussed in Chapter 2, partnerships with service providers is crucial to ensure that these participants receive support to deal with the feelings the body mapping sessions may surface. Partnerships also mean that participants have access to a support person during the body mapping process if they choose. Indeed, both of us have found that building capacity of workers who work with participants – by conducting body mapping workshops – has allowed for them to continue to work with the body mapping with the participant after the research is complete.

Representations of complex trauma

35

Similarly, as outlined in Chapter 3, for some groups of people, choices and options to be involved in body mapping as a group may be important to ensure a parti­ cipant’s sense of safety (see also Dew et al., 2018). We both also integrate an understanding of trauma into the body mapping process. Experts recommend mindfulness practice as a way to teach a person with a trauma history how to observe feelings rather than react to them (van der Kolk, 2015, p. 128). In our body mapping projects, we give the participants the option to do a short body scan exercise, which is based in mindfulness meditation and designed to bring attention to the breath and the body. We also allow participants to direct the duration and rhythm of the body mapping sessions, looking for signs of distress or agitation and asking if participants need breaks or would like to stop.

Implications for practice We have shared some reflections on the potential for research participation to offer new ways of understanding experiences shaped by childhood trauma. Our encounters with people with complex trauma backgrounds have occurred in research settings and we are not clinical psychologists or art therapists. However, we also bring professional experience working with disadvantaged families and communities, as an educator (LS) and caseworker (SC). We have previously theorised complex support needs as a social ecology in which complexity is produced in the interaction between individuals and support systems (Collings et al., 2018; Smith & Dowse, 2019b). We can see enormous potential for body mapping to inform practice by encouraging practitioners to ap­ proach the people they work with through a trauma lens. Trauma awareness means recognising that trauma impact the way a person relates and reacts in ways that can be unpredictable, irrational, and inappropriate. There is growing awareness of the need for trauma-informed practice in professional settings such as child care centres, schools, and foster care agencies (McLean, 2016). However, the focus of attention is on the effects of trauma on children. Szilagyi (2018, p. 10) notes that ‘All the professionals who assist child welfare in its work need to become proficient in childhood trauma and its impact, so they have the knowledge and skills to undertake their work in a way that promotes healing for children and families’. Unresolved trauma in adults can be compounded by hostile and destructive encounters with services and systems, which has been described as ‘system-induced trauma’ (Hinton, 2018).

References Atkinson, J. (2013). Trauma-informed services and trauma-specific care for indigenous Australian children. Resource sheet no. 21. Closing the Gap Clearinghouse, July. Bockting, W. (2014). The impact of stigma on transgender identity development and mental health. In B. Kreukels, T. Steensma and A. de Vries (Eds.), Gender dysphoria and disorders of sex development. Focus on sexuality research. Boston, MA: Springer. Child Welfare Information Gateway. (2015). Developing a trauma-informed child welfare system. Washington, DC: U.S. Department of Health and Human Services, Children’s Bureau. https://www.childwelfare.gov/pubs/issue-briefs/trauma-informed/.

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Collings, S., Dew, A. and Dowse, L. (2016). Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. Journal of Intellectual & Developmental Disability, 41, 272–276. Collings, S., Dew, A. and Dowse, L. (2018). “Testing it in the real world”: Action research to apply a conceptual framework to social care planning. Action Research. Early Online 27 February. doi:10.1177/1476750318761534. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 17(2), Art. 22. Department of Human Services (DHS). (2002). Literature review to inform a Department of Human Services Project on responding to people with high and complex needs. Melbourne, Australia: Operations Division, Victorian Department of Human Services. http://trove. nla.gov.au/version/20849397. Everly, G. and Lating, J. (2019). A clinical guide to the treatment of the human stress response (4th Edition). New York: Springer. Gastaldo, D., Carrasco, C. and Magalhães, L. (2012). Entangled in a web of exploitation and solidarity: Latin American undocumented workers in the Greater Toronto Area. http:// www.migrationhealth.ca/undocumented-workers-ontario/summary-findings. Hinton, T. (2018). Breaking the cycle: Supporting Tasmanian parents to prevent recurrent removals. Report, Social Action Research Centre, Anglicare Tasmania. Jung, C. (1991). The archetypes and the collective unconscious (2nd Edition). London and New York: Routledge. McLean, S. (2016). The effect of trauma on the brain development of children: Evidence base principles for supporting the recovery of children in care. CFCA Practitioner Resource Australian Institute of Family Studies, June. https://aifs.gov.au/cfca/ publications/effect-trauma-brain-development-children. Rankin, J., & Regan, S. (2004). Meeting complex needs: The future of social care. London, UK: The Institute for Public Policy Research and Turning Point. SAMHSA (2014). Concept of Trauma and Guidance for a Trauma-Informed Approach. SAMHSA: U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration. https://store.samhsa.gov/system/files/sma14-4884.pdf. Smith, L. and Dowse, L. (2019a). Times during transition for young people with complex support needs: Entangled critical moments, static liminal periods and contingent meaning making times. Journal of Youth Studies. Published online February 8, 2019. doi:10.1080/13676261.2019.1575346. Smith, L. and Dowse, L. (2019b). Complexity and disability: Drawing from a complexity approach to think through disability at the intersections. In K. Ellis, R. GarlandThomson, M. Kent and R. Robertson (Eds.), Interdisciplinary approaches to disability: Looking towards the future (Vol. 2, pp. 123–141). Oxon: Routledge. Solomon, J. (2007). “Living with X”: A body mapping journey in time of HIV and AIDS. Facilitator’s guide. Johannesburg: REPSSI. Szilagyi, M. and Solomon, J. (2018). The long view: Has anything really improved for children and families involved with child welfare over 3 decades? Journal of Applied Research on Children: Informing Policy for Children at Risk, 9(1), Article 5. van der Kolk, B. (2015). The body keeps the score. United Kingdom: Penguin Books. Wall, L., Higgins, D. and Hunter, C. (2016). Trauma-informed care in child/family welfare services. CFCA Paper No. 37. Melbourne: Child Family Community Australia Information Exchange, Australian Institute of Family Studies. https://aifs.gov.au/cfca/ publications/trauma-informed-care-child-family-welfare-services/trauma-terminology.

4 BODY MAPPING IN PROCESS Observing how participants represent experiences of anxiety Susan Cox, Marilys Guillemin, and Katherine M. Boydell

Introduction The use of body mapping has grown since its first reported usage by MacCormack and Draper (1987) in the mid-1980s. This early work explored women’s fertility and their bodies in rural Jamaica. This was followed by other significant works, including that of Cornwall (1992) who examined sexuality and reproductive health with women in southern Zimbabwe using body mapping methods. Further work in the 2000s focused on body, health, and trauma, primarily involving marginalised groups, including comprehensive systematic reviews of body mapping (de Jager et al. 2016; Gastaldo et al. 2018). In response to this growth in usage of body mapping, Solomon (2007) developed a facilitator’s guide available online to inform body mapping methods. In its original inception, body mapping was developed as a method combining research and art within a therapeutic process. de Jager et al. (2016) described the three key attributes of body mapping. Body mapping is embedded in (1) social justice with the aim of advocacy and therapy; (2) arts-based inquiries designed to elicit embodied awareness; and (3) knowledge translation, allowing for knowledge and research dissemination, particularly for those participants who would otherwise remain unheard. Although the use of body mapping originated in the Global South to mobilise communities, the context of its use has changed over time. In this chapter, we outline a different context and modified approach for the use of body mapping with the general public, rather than with specific populations. Our revised approach takes less time than the traditional method but still incorporates most of the key elements. We argue that body mapping can successfully be adapted and usefully employed for knowledge translation with a public audience. Different body mapping methods have been employed since its first inception. To position our approach, we briefly describe the method put forward by

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Solomon (2007). This approach is based on workshops that are conducted over four to five consecutive days. Participants are led by a facilitator through various exercises where they use art materials to create their body map. With assistance, participants first trace their body outline, after which the outline of a ‘support person’ is added. Participants then add to their map, following prompts from the facilitator. The body maps are then displayed in the group, where participants are encouraged to reflect on each other’s body maps. The facilitator creates a supportive environment where participants can reflect and share their feelings as the workshops progress. The benefits and challenges of body mapping more broadly have been well rehearsed elsewhere (de Jager et al., 2016; Gastaldo et al. 2018; Orchard, 2017). Here, we will focus on our modified approach and its use with a public audience primarily for the purpose of embodied awareness and knowledge translation. We begin by describing the project and the context on which this modified approach is based. We outline the method used and detail its various stages, with key differentiating points highlighted for each stage. The method undertaken here is based on that of Gastaldo et al. (2012) and Boydell et al. (2018), but within a public setting. We discuss the ethical challenges of using this modified approach, and point to how these were addressed. Our aim here is not to analyse the body maps produced; rather, we focus on the method and processes employed. We discuss both the benefits and challenges of this modified approach before concluding that using this modified approach offers particular benefits for knowledge translation with general audiences.

About the body mapping in the galleries project The body mapping in the galleries (BMiG) project was one of the events offered as part of The Big Anxiety: festival of art + science + people, which took place September 27–November 3, 2017 (www.thebiganxiety.com). The Big Anxiety festival uniquely integrates an expansive mental health research and knowledge translation program with a world-class arts festival. The Big Anxiety festival goal was to bring together leading artists, scientists, and thinkers, with the aim of developing rich and engaging methods to communicate the experiences of mental illness, recovery, and resilience. The festival presented more than 70 projects over seven weeks across Greater Sydney, Australia, including state-of-the-art immersive environments, international art exhibitions, theatre and performance, interactive media events, and public forums. Our research and practice to date has shown that framing participatory events in terms of anxiety (rather than more specific mental health disorders) has broad appeal and captures the interest of those who are disengaged from health campaigns (Larsen et al., 2018). The pervasiveness of anxiety in our society – everyone experiences anxiety in some form, in some intensity, at some time in their lives – makes it an accessible entry point to discuss a broad range of mental health matters. Our goal was to use body mapping within a public setting with a general self-selected audience to

Body mapping experiences of anxiety 39

express experiences of anxiety and methods for coping with anxiety (https://www. thebiganxiety.org/events/body-mapping-galleries/). The Art Gallery of New South Wales was considered a ‘safe’ and non-stigmatising setting for individuals to engage with their experience of mental health issues, taking the process of information delivery out of an overt public health context and into a cultural framework. The session, conducted from 7:15 pm to 9:00 pm, afforded opportunities for reflection, talking about and visualising anxiety experiences. The body mapping gallery was set up in the midst of the ‘Something Living’ exhibition, the title derived from a quote by Philip Guston, one of the featured artists who expressed the desire to make paintings that do more than just illustrate or diagram the world but have ‘an uncanny, unruly life of their own’. The exhibition was intended to inspire the creation of body maps via the figurative paintings and exploratory approach to the process of creating human images. The public gallery space where the body mapping was conducted was open for the public to wander through, as part of the Gallery’s weekly ‘Art After Hours’ offering. The body mapping session was sponsored by the gallery’s Community Engagement Program, who provided support for the planning process and advertised the event through their social media channels. The session had the institutional support, backing and sponsorship of the Black Dog Institute (medical research facility), the University of New South Wales Art & Design and the Gallery itself. Participants were the members of the general public who self-selected via their response to the advertisement of the event via The Big Anxiety website, the Art Gallery of New South Wales website, and the social media associated with each. Registration for the event was accomplished via EventBrite and incurred a minimal charge of $10 (to cover body mapping supplies). The event was limited by the space available and thus it was necessary to cap attendance at 50 individuals. The event quickly sold out, with a waiting list. Consent was provided by participants to take photos and video during the event. At all The Big Anxiety events, visitors were asked to complete an evaluation survey developed as a result of a codesign workshop to develop a logic model based on theory of change (described in Boydell et al., 2019, under review). The Big Anxiety volunteers distributed the survey following their attendance at a mandatory information session to ensure that the procedure and approach were consistent across the festival. Festival attendees were also invited to complete the survey via an online survey platform. All participants at the BMiG event were emailed an evaluation survey after attending the event. We were particularly interested in the open-ended questions that asked about the impact of the body mapping process. Nine responses were received and are reported on later in the chapter.

BMiG participants A total of 49 participants took part in the BMiG project. Demographic data were not collected, but participants appeared to cover a mix of age groups, from early teens to those in their 50s; most participants appeared to be in their 20s to early 30s. The majority presented as women with six men participating. Some groups of two

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to four people arrived together and seemed to know one another, but at least half of the participants did not appear to know anyone else in the group. Participants self-selected into two groups (Group 1: n = 24; Group 2: n = 25). Each group was led by an experienced facilitator (one of whom was KB) with an observer present (SC and MG). Each observer took field notes based on their observations of the process and participants’ responses. These field notes and our reflections provide the primary data source for this paper. Assistants were present to help with the provision of materials. There was also a video/photographer present; participants who did not wish to be photographed could opt out by putting a sticker on their body map (no one did).

Body mapping process Stage 1: Preparation to body mapping To prepare for the body mapping exercise, participants were seated on stools in a circle with the facilitator present. The purpose of this stage was to briefly introduce participants to body mapping and its use to depict experiences of anxiety and how participants deal with it. Participants were informed that they could stop and/or leave at any time during the process. Facilitators then led the participants through a 5-minute mindfulness exercise to prepare participants to get in touch with their bodies and to engage in depicting their embodied experiences of anxiety. Participants were encouraged not to be self-judging. In addition, group rules were established regarding respecting others, and not interrupting or judging the work of others. This preparatory stage served to orient participants to body mapping, to address and reduce any reluctance related to drawing, to establish group expectations, and to provide an environment conducive to self-reflection and self-care.

Stage 2: Body tracing For this stage, participants were asked to form pairs to trace each other’s body outlines. Participants were encouraged to consider a position or posture that best represents who they are and/or their experience of being anxious, and/or managing their anxiety; for example, it was suggested that participants consider body positions such as sleeping, stretching out, curling up, etc. In our observations we were interested in how participants approached this task. Pairing seemed to be straight forward, despite most participants not knowing one another. There was little discussion or conversation between the paired participants during the tracing process. Despite the public setting, participants did not appear to be inhibited. Although some participants experimented with different postures, most then positioned themselves quite quickly in their preferred poses. Some participants positioned themselves in very specific postures, for example, with clenched fists; however, it was not always possible for their partners

Body mapping experiences of anxiety 41

to trace these specificities. Some participants also included more than one body tracing on the page.

Stage 3: Creating the body map During this stage, participants were engaged in choosing and using crayons, pastels, coloured pens, pencils, and markers to bring their traced body outlines to life as vivid body maps. This was an individualized activity although participants worked intensively side by side. A few participants were somewhat reticent about how to get started and the facilitators assisted as necessary to offer various options. Most participants were sitting or kneeling on the paper as they worked on different sections of their body maps although some eventually sprawled out on the floor beside their body maps. Many started at the head and worked down to the torso although others began with other parts of the body according to their own internally directed process. The gallery space was quiet aside from the sounds of movement and mark-making on the paper. Participants adopted a wide range of techniques and approaches to personalize their body maps. Drawing with the hands was the most common approach with only a few participants experimenting with making footprints or using other body parts in mark-making. Choice of colours was diverse with some participants utilizing only one or two colours and others including a wide range of colours. Some focused on specific areas of the body, whereas others developed their maps in a more holistic way, giving equal attention to the whole body. Most participants concentrated their attention on the interior of the body map while a few also worked with the space outside the body’s outline. A few participants included female or male reproductive organs on their body maps or personalized their body maps in specifically gendered ways. Many focused on facial details and expressions or included representations of significant bodily functions such as a beating heart or prominent stomach. Only a few body maps included words or phrases. Some participants photographed their work as it emerged and others sat in contemplation of their creations almost as if the body map was a mirror for the self. No one seemed concerned with the occasional visitor to the art gallery who stopped to observe the body mapping.

Stage 4: Completing the maps and sharing experiences During the last stage of body mapping, participants added the final touches to their body maps. For most, the process seemed to be complete after about 45 minutes. At this point, most seemed to just stop without hesitation in knowing when they had finished. The facilitators suggested that participants could use post-it notes to flag key features of the body map for discussion or add text they might wish to pick up on if they wished to add more detail later. Once they had finished, participants began chatting about the experience and some took selfies of themselves with their body map. Others walked around viewing the work of other

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participants and some asked permission to take photos of other body maps. A few visitors to the gallery wandered in and joined in the process of viewing the body maps. Facilitators encouraged participants to come together in a circle and share comments. The discussion that ensued suggested consensus that the process was calming and therapeutic in that it allowed participants to give shape and physical form to their anxiety. Some noted that they were anxious at the beginning but then began to enjoy the process.

Discussion In this chapter, we have outlined an adapted use of body mapping primarily for embodied awareness and knowledge translation in a public audience setting. Although we have used body mapping anxiety as illustrative, we suggest that this modified body mapping method can be used for other content areas. In the introduction to this chapter, we described body mapping in terms of three attributes: being therapeutic, eliciting embodied awareness, and for knowledge translation. It was not our aim to undertake this activity as a therapeutic exercise and did not set up appropriate parameters to enable this or to systematically evaluate this component. However, two participants wrote in their evaluation: I was in the midst of a very stressful week for both personal and professional reasons at the time of the event. Mapping my anxiety helped to think through these experiences and once I represented them on my map, I felt free of many of them. It was a therapeutic exercise and was very pleasurable. Helpful to externalise anxiety as it is such an isolating experience. In the post body mapping debrief, when asked how they felt during the body mapping process, some participants also commented that they had found the process to be therapeutic. These comments indicate the therapeutic potential of this modified body mapping approach, even though in our case that was not its stated or intended aim. The body maps produced and the responses elicited clearly indicated participants’ embodied knowledge of their anxiety; one participant commented in their evaluation: ‘Interesting to think about where in the body anxiety is located and what it does’. We suggest that the value of body mapping lies in both the process of body mapping as well as the body map product itself. In reflecting firstly on the body mapping process, participants described it as empowering, calming, normalizing, and claim they felt intrigued, connected, engaged, relaxed, and uplifted. One participant wrote in their evaluation: ‘I came with my mum so we were able to bond over the exercise and open up to each other’. With respect to the body map produced, the visual product enabled participants to articulate anxiety, a phenomenon that for many can be abstract and difficult to express in words. Body mapping, as with many other visual (research)

Body mapping experiences of anxiety 43

methodologies (Guillemin & Drew, 2010), offers benefits for participants in terms of both the process of creating the visual product, as well as the visual product itself and what it can elicit in terms of embodied awareness. Others have discussed in detail the benefits and challenges of the more traditional forms of body mapping (Dew et al., 2018; Gastaldo et al., 2018). Here, we outline what we see as the benefits and challenges of the modified body mapping approach, as employed in the BMiG project. The two key benefits of the modified approach relate to the reduced time requirement and inclusivity of opening up the process to the public. Firstly, our modified approach took place over 2 hours. This is in contrast to the four to five consecutive days advocated by Solomon (2007). This shorter time period means that it is more achievable for people who may not otherwise be able to devote the time commitment of a four- to five-day process. Furthermore, it may not be possible or desirable for some with particular conditions to spend time in a group situation for an extended period of time. It should be noted that the modified method proposed by Gastaldo et al. (2012) is carried out over three 1-hour sessions. The second benefit is opening up the body mapping activity to the general public. The body mapping activity was advertised as part of The Big Anxiety festival and anyone could choose to attend (for a minimal fee). This open access resulted in a greater sense of inclusivity and potential benefit for a broader group of people. Most participants did not indicate that they knew each other prior to attending. For some people, there were particular benefits to being with a group of strangers, rather than taking part in an intensive small group experience with people you know. We note that this modified body mapping approach also presents with methodological and ethical challenges. The methodological challenges of our modified approach relate to participants’ capacity to create a body map in a shorter period of time, and reduced time for self-reflection and debriefing. We acknowledge that body mapping presents difficulties for those who either physically cannot produce a body map, or do not feel confident about their drawing ability. This can pose added difficulties in a reduced time period. To address participants’ possible lack of confidence, we stress the importance of the initial preparatory stage where participants are introduced to body mapping and encouraged not to self-judge or judge others. Despite the shorter period of time, it appeared that all participants were able to complete their body map to their satisfaction. The emerging use of digital body mapping offers potential for those with physical limitations. de Jager et al. (2016) point to the possibilities that digital technologies could offer to body mapping. This is an area rich for future exploration. The second methodological challenge is less time available for self-reflection and debriefing. We recognize this as a limitation as some people will require more time for self-reflection. However, the debriefing stage and the evaluations suggest that respondents were able to self-reflect. No doubt many continued to self-reflect well beyond the end of the body mapping activity. For some people, post-activity self-reflection could be a double-edged sword. The potential risk of harm to

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participants following the body mapping activity points to the crossing over of methodological and ethical challenges. For some participants with certain anxiety issues, the body mapping activity may have raised particular concerns and heightened anxiety. We acknowledge that emotional monitoring of participants is more difficult with a 2-hour activity. In recognition of this, participants were provided with contact information for various mental health support agencies and encouraged to contact them if required. Body mapping generally presents a number of ethical challenges which have been discussed in detail by others (de Jager et al., 2016; Gastaldo et al. 2018; Orchard, 2017). Many of these share similarities with other arts-based research and visual methodologies more broadly. These include gaining informed consent on the part of participants, respecting privacy and confidentiality, clarifying ownership of the body maps, storage and subsequent display or publication of the body maps, and minimizing harm to those involved, including participants, facilitators, and researchers. With respect to our modified approach, participants chose to attend the session and attendance was considered implied consent; however, formal consent was sought to photograph and video the session, with an option for participants to opt-out (none did). Photographs were taken of the completed body maps. Participants were invited to take their body maps with them following the session, and all participants took their maps home with them. During the preparatory stage, participants were reminded about respect for others (and themselves). We have addressed the issue of potential risk of harm post-activity, and how we responded to this. We acknowledge that for those experiencing anxiety, this may pose additional risk. We need to also be aware of potential secondary risk of emotional harm for the facilitators and assistants involved. Just as with research methods, we need to be cognisant of potential harm to researchers and not just to participants; the same applies here. We suggest that guidelines for the ethical use of visual methodologies are equally relevant here and can be useful in considering the potential ethical challenges and how they could be addressed (Cox et al., 2014). It is interesting to reflect on the benefits and critiques of modifying methods, especially those such as body mapping whose origins are based in social and political critique. Body mapping’s genesis arose from a desire to understand health, embodiment, and trauma from the perspective of marginalised groups. The method was celebrated for its ability to creatively represent embodied experiences and life events in a meaningful way for those involved. The added therapeutic benefits of body mapping for participants, together with its empowering attributes contributed to its increased usage. However, Orchard (2017) challenges us to consider whether it is culturally and politically appropriate to selectively use aspects of research methods; she asks: ‘Is it permissible to selectively borrow aspects of the method for use in settings that are different politically, culturally, and materially from those in which body mapping was created?’ (p. 86). Although we have indeed borrowed certain elements of the more traditional body mapping method, we argue that the context in which we have employed it offers participants particular benefits in a respectful environment.

Body mapping experiences of anxiety 45

We agree with Orchard (2017) that it is important to be cognisant of the method’s origins and the context in which it was created. Being reflexive about our aims, practices and ethical responsibilities are crucial here. We argue that methodological innovation offers many benefits as long as we are also aware of the challenges posed. Following the lead of others in the field (de Jager et al., 2016; Gastaldo et al. 2018), we look forward to future methodological innovation of body mapping, some of which are described in later chapters of this text (see Edwards and Ludlow’s work). The potential of digital body mapping presents interesting possibilities, especially for those participants with physical limitations. Body mapping has tended to be a very individual activity. The potential use of group body mapping offers new possibilities for collective representations of the social body and different kinds of interpretations of embodiment.

References Boydell, K.M., Davidson, L. and Bennett, J. (2019). Exploring the ‘impact’ of the Big Anxiety: Festival of art + science + people. American Journal of Psychosocial Rehabilitation (in press). Boydell, K.M., de Jager, A., Ball, J., Curtis, J., Lappin, J., Kalucy, M., Rosenbaum, S., Tewson, A., Vaughan, P., Ward, P. and Watkins, A. (2018). Mapping a novel landscape for understanding physical and mental health: Arts-based research with youth experiencing psychosis. Art/Research International, 3(2), 236–261. Cornwall, A. (1992). Body mapping in health RRA/PRA. RRA Notes, 16, 69–76. Cox, S., Drew, S., Guillemin, M., Howell, C., Warr, D. and Waycott, J. (2014) Guidelines for ethical visual research methods. Melbourne: The University of Melbourne. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforchung/ Forum: Qualitative Social Research, 17(2). http://nbn-resolving.de/urn:nbn:de:0114fqs1602225. Dew, A., Smith, L., Collings, S. and Dillon Savage, I. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum Qualitative Sozialforchung/ Forum: Qualitative Social Research. doi:http://dx.doi.org/10.17169/fqs-19.2.2929. Gastaldo, D., Magalhães, L., Carrasco, C. and Davy, C. (2012). Body-map storytelling as research: Methodological considerations for telling the stories of undocumented workers through body mapping. Facilitator Guide. http://www.migrationhealth.ca/undocumentedworkers-ontario/ body%20mapping [Accessed: October 10, 2015]. Gastaldo, D., Rivas Quarneti, N. and Magalhaes, L. (2018). Body-map storytelling as a health research methodology: Blurrred lines creating clear pictures. Forum Qualitative Sozialforchung/Forum: Qualitative Social Research, 19(2). http://www.qualitative-research. net/index.php/fqs/article/view/2858 [Accessed: July 22, 2019]. doi:http://dx.doi.org/ 10.17169/fqs-19.2.2858. Guillemin, M. and Drew S. (2010). Questions of process in participant-generated visual methodologies. Visual Studies, 25(2), 175–188. Larsen, M., Vaughan, P., Bennett, J. and Boydell, K.M. (2018). The BIG Anxiety project: Visually exploring public experiences and attitudes to anxiety. Journal of Applied Arts & Health, 9(1), 85–97.

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MacCormack, C.P. and Draper, A. (1987). Social and cognitive aspects of female sexuality in Jamaica. In P. Caplan (Ed.), The cultural construction of sexuality (pp. 143–165). London: Routledge. Orchard, T. (2017). Remembering the body. Ethical issues in body mapping research. Switzerland: Springer. Solomon, J. (2007). Living with X: A body mapping journey in time of HIV and AIDS. Facilitator’s guide. Johannesburg: REPSSI.

5 THE LOGISTICS OF MAKING AND PRESERVING BODY MAPS AS RESEARCH DATA Angela Dew, Anna Tewson, Bernadette Curryer, and Isabella Dillon Savage

Background The use of body mapping by all researchers co-authoring this book was informed by the definitive guide to body mapping produced by Gastaldo et al. (2012). Authors adapted Gastaldo et al.’s guide to suit their individual body mapping projects and participant groups. Adaptations include the materials, space, and time required and also making the method work for a diversity of participant groups.

Art materials A range of art materials are useful in creating body maps. Typical life-sized body maps require high-quality arts paper cut into lengths to accommodate the height of participants. The paper needs to be of sufficient thickness and quality to ensure participants can draw on it without tearing, and that collage objects (cut out pictures, fabric, beads, etc.) can be stuck on without damaging it. This paper is sourced through an arts supplier. White paper is often used in order to paint/ draw/collage using a mixture of colours. An alternative is to use black paper and white art products creating a different effect but with the drawback that black paper shows more scuff marks. The downside of using high-quality arts paper of either colour is that it is bulky and heavy meaning that even small numbers of maps represent challenges for transportation and storage as described in more detail later. In addition to the paper, researchers need to consider the arts materials which they will make available to participants with which to create their maps. Possible materials include paints and/or paint sticks, texts, crayons, or coloured pencils. A downside of working with paint is the need to have available water, brushes, clean up cloths, and protection for surfaces and for participants’ clothing. The potential

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of creating mess is an added consideration if a public space is being used. Paint will also require drying time prior to maps being rolled and transported. In opting not to use paint, Gastaldo et al. (2012, p. 15) noted ‘We realised that the fully painted body maps as developed by Solomon (2002) would take significantly more time to complete and would require special storage considerations post interview to allow sufficient time for the paint to dry and the material to settle’. Paint sticks, which do not require water, are a good, but relatively expensive, alternative. Additional materials may include magazines for cutting out images to make collages, photographs, scissors, glue, fabric, glitter, and beads. Using black paper removes some of the complicating factors including the messiness of co­ loured paint, or the expense of purchasing multiple art products. Participants may also be asked to bring their own images or objects of personal significance related to the topic being explored. While not overly expensive, researchers need to budget for purchasing paper and arts supplies and also need to consider transportation of the materials to and from the body mapping venue requiring access to a vehicle with sufficient space to do this. Figure 5.1 shows the array of arts materials used in Study 5 and their display for participants to select from.

FIGURE 5.1

Table with art supplies

Body maps as research data

FIGURE 5.2

49

Researcher and participant drawing body mapping outline

Space While creating full-sized body maps, a large space is required to accommodate the paper and to ensure that the participant has room to comfortably move around the map during the process. Figure 5.2 displays the space requirements for drawing a full-size body outline. The requirement for sufficient table or floor space means some domestic set­ tings are unsuitable for using this method (Gastaldo et al., 2012) and not all par­ ticipants will be able or willing to work on the floor. In Study 9, University of Sydney PhD student Bernadette Curryer created body maps with four participant dyads (mothers and adult sons or daughters with intellectual disability) to under­ stand the support relationship between them (Curryer et al., 2019). This study represented a unique use of body mapping as a research data collection tool in two aspects, it attempted to understand the experience of a familial dyadic relationship and one member of each dyad had an intellectual disability. Participants in Bernadette’s study drew their two body outlines on one large piece of arts paper, usually alongside but in one case on top of the other, and then proceeded to work together to represent their experiences. Bernadette explains the challenges she experienced using this method in participants’ homes.

Study 9: Experience from the field The use of participants’ homes for undertaking body mapping exercises had benefits. They were freely available, private spaces providing an added sense of safety for participants. They also permitted observation of the dyadic relationship within the participant’s usual environment. However, creating body maps in participants’ homes brought practical difficulties. All participants were able to lie on the floor to have their body outline drawn; however, this required, in most cases, the moving of furniture. Also, most mothers found getting down on the

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floor difficult to do. Three of the four dyads, due to the physical difficultly in working on the floor, moved the paper on to their dining table for the completion of the body maps. These tables varied in size, two being quite small and in a confined area, making it difficult to move around the table. The following observations of the body mapping process were made: •

•

• • •

The size of the table affected the area of the body maps readily available for placing text/images on. Although the participants could have moved the paper, this was not easy and so was rarely done. The two body maps completed in the homes with the smallest space and using small tables, and had the highest concentration of text/images on the head and shoulder areas of the body outlines. These participants sat in the one position for the activity. At no time while working on the body maps were these participants able to see the full map – this may have reduced their sense of the maps representing their whole bodies. The dyad using a larger table covered a greater area including purposeful use of the area near the legs and hands on the body outline. The dyad that chose to stay on the floor worked together, moving around to cover the entire paper with text and images. Although magazines were available as an optional source of images for gluing onto the maps, none of the dyads chose this option. This may have been by choice, although space constraints and lack of an area setup with these easily accessible may have influenced this.

The following considerations were suggested prior to planning location: • • •

•

Be aware of, and plan around, the physical limitations of any participants, for example, due to age or physical disability. Benefits of a private home location must be balanced with practical space limitations. If a home is the chosen location, check that the living area floor is large enough to draw the body outline and request that a table is available and cleared. The placement of text/images may have more to do with ease of access rather than representing meaning and this must be accounted for in analysis.

Another consideration in the production of full-sized body maps is that some participants may feel uncomfortable having their body drawn around. This dis­ comfort may be due to participants’ cultural or religious beliefs or may reflect past trauma or negative experiences, or a dislike of close physical contact especially by an unfamiliar person. Researchers must be mindful of the potential for participants to decline to engage in this part of the activity and be prepared to adapt and modify the method. For example, a person known to the participant such as a family member, friend, or support worker may be asked to draw around the

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participant’s body either prior to or at the session, a pre-prepared outline of, for example, one of the researchers may be used, or participants may choose to freehand draw their outline. In Study 7, a female participant who is a Muslim chose to free-hand draw her outline including depicting in elaborate detail her hijab (Dew et al., 2018). Alternatives to full-sized body maps may also be considered, for example, a preprepared outline drawn onto a smaller piece of paper or card. While making the logistics of the exercise easier, this approach may distance the participant from the embodied experience as the connection between participant and his/her outline is removed. The creation of a web-based body mapping system is described in Chapter 7. In Study 5, a planning guide (based on body map data analysis) was created for use by and with people with intellectual disability and complex support needs. Feedback by support workers, who attended the body mapping workshops, on the usefulness of the body mapping approach in assisting people with intellectual disability to make plans for their future led to the researchers incorporating a smallscale body outline in the guide as a prompt to help people with intellectual dis­ ability and their supporters to think about the embodied internal and external aspects of planning. This study is described in more detail in Chapter 11. Figure 5.3 shows this outline as used in the guide.

Accessibility Given the physical and highly visual nature of the body mapping process – ty­ pically lying down on a large piece of paper and having your outline traced and then filling the map with images and visual representations – it may appear that this method is unsuitable for use with participants with physical or sensory impair­ ments or those who have age or chronic health condition-related mobility re­ strictions. Body mapping also involves creating an abstract representation of an experience, which may be considered difficult for a person with an intellectual or cognitive disability. However, a number of the studies reported on in this book have included participants with intellectual, cognitive, physical, sensory, and psychosocial impairments. These studies made adaptations to the body mapping process to ensure access and to facilitate the inclusion of all participants. For example, in Studies 5–9, all participants had intellectual/cognitive impairments and Study 5 included partici­ pants with physical and sensory impairments. Studies 2–4 included participants with psychosocial disability due to anxiety. The example given later comes from the researcher field notes from Study 5 where one participant had a visual impairment. Angela (pseudonym) had a very clear idea about her goal (of travelling overseas) and what she needed to do to achieve it. Although her visual impairment meant she was unable to actually draw on the body map herself, she was very clear in directing the support person on what should be on the map. She was not

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FIGURE 5.3

Body outline used in Study 5 guide

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concerned about where things were placed or what colour was used. The support person did an excellent job of clarifying what Angela wanted to draw on the map. Cultural accessibility is a further consideration to ensure body mapping research is inclusive and representative of diverse views and experiences. A modified version of body mapping – community mapping – was developed for Study 6 which involved Aboriginal and Torres Strait Islander Australians with disability, family members and support workers creating a collective map representing their community cultural perspective (Dew et al., in press; 2019). Prior consultation with Aboriginal and Torres Strait Islander people identified that this collectivist, rather than individual, approach was a better cultural fit. Other cultural groups may prefer a collectivist approach or some other adaptation of the method.

Time Pre-planning is necessary for all research and is essential when using body map­ ping. Researchers need to carefully consider the purpose and set up of the session, how the process of body mapping will be explained and/or demonstrated to participants, research team members’ roles, and how participant engagement will be facilitated, supported, and followed up. The following example from the field provides an overview of pre-planning tasks engaged in for Study 3 with members of the general public who experienced anxiety.

Study 3: Experience from the field The ‘Expressing the Ineffable’ study was an event included within the Sydney Science Festival (SSF). Recruitment took place through an open invitation to the general public on the SSF website and the Black Dog Institute’s communication channels. Potential participants were provided with a brief overview of body mapping, and what the body mapping activity would explore, that is, experiences of anxiety: what it feels like and how it is managed. They were told that they would be guided through a series of meditative exercises before and during the body mapping process. The number of participants was limited to the size of the room hired – which fitted forty people at capacity, taking into account enough room for participants and their body maps, and space either side to move around the room. Given that the general public were invited, it was difficult to predict the number of participants who would attend the event, so researchers had to prepare for the potential of forty participants. Pre-planning tasks were as follows: •

•

Black arts paper was sourced from an arts supplier and precut before the event necessitating purchase of sufficient quantity to allow for a mix of sizes from 1.5 to 2 metres per person. It took two research assistants more than 3 hours to cut the paper before the event took place.

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•

Researchers also had to purchase the appropriate art products for use on the black paper. Investigation was required to find the right type of product that would dry quickly, but would be thick enough to be seen from a distance. Thick white textas were primarily used. The body mapping process was adapted to fit within the 3 hour time period including the inclusion of mediation exercises which were led by a meditative instructor hired for the event. Typically, body mapping takes place over multiple days, so time was required to adapt the approach, so all of the ne­ cessary activities would fit into the available time.

•

Participants were not required to be diagnosed with, or receiving current treat­ ment for anxiety. This changed how they were guided through the body mapping process. The guide had to be general enough to avoid assumptions about parti­ cipants’ experiences of anxiety. This allowed for participants to define what an­ xiety meant to them rather than using diagnostic criteria. While conducting body mapping, the usual research tasks related to study design and funding, ethics clearance, participant recruitment, development of data collection tools, and interview questions need to be undertaken. In addition, time must also be allocated to organising venues which meet space requirements, purchasing arts materials, arranging catering (if appropriate), and planning for adaptations of the method to suit the participant group as described previously. On the day of the sessions, the room must be set up to make it workable for either the individual or the group (Gastaldo et al., 2012). Time is required for participants to engage fully with and reflect on the task of making their map. For many body mapping participants, and especially those with cognitive disability or who have experienced trauma, researchers need to work one-on-one to guide the person to remain focused on the task and ensure their emotional well-being throughout (Dew et al., 2018). Given the complex nature of the visual, audio, and written data collection involved in body mapping, analysis is also a time consuming process which ideally will involve multiple team members and will be conducted as soon as possible following the body mapping sessions. The analysis is discussed in more detail in Chapter 6.

Photographing and storing maps Research data must typically be kept for a number of years after project com­ pletion making consideration of storage issues a requirement of using this method. Storage of the body maps is potentially problematic as they are bulky and often fragile given the materials attached to them. One way of meeting data retention regulations and overcoming space issues, is to take high resolution photographs of the body maps. Ideally, these photos should be taken as soon as possible after the body maps are made.

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Photographing body maps requires them to be hung upright to ensure that the image is not warped. Lighting is also important to ensure the photograph is true to the original, so all of the images/symbols are captured. An adjustable stand can be purchased to hang the variety of sizes of body maps, and to ensure that each map is hung straight. Working from photographs aids analysis as they are easier to manage compared to the full-sized body maps. Photo-editing software may also assist in editing out any blemishes, or cropping the images if needed. An additional con­ sideration prior to publication or display is the removal from the maps of po­ tentially identifying names or descriptors which may compromise participant anonymity. Ideally, this editing would occur after the maps have been photo­ graphed so the original version of the maps remain intact. Photo-editing software can be used to hide potentially identifying material; however, this takes time and can impact the final visual outcome. Photographing the maps on the day and in situ will produce the best quality reproductions prior to any damage that may occur during transportation or sto­ rage. Photographing the maps on the day they are made also allows participants to take home their map if they so wish. In Study 6, community maps were created by Aboriginal Australians with disability and these were photographed in situ and then left with each community to add to and display as they wanted. If participants do not wish or have the capacity to take their body map home, photographing the body maps also means that participants can receive a digitised version.

Summary This chapter has provided a detailed discussion of the logistics of creating and preserving body maps as research data. There are multiple logistical aspects to be considered while planning and implementing body mapping. A primary con­ sideration is the choice and purchase of arts materials made alongside consideration of the available space for conducting body mapping. Adaptation of the method may also be necessary when the research involves people with physical, sensory, or cognitive impairment and/or is inclusive of people from culturally diverse back­ grounds. The time required to prepare for and conduct body mapping research is considerable and needs to be adequately planned for. The necessary storage of large and fragile body maps and the importance of high-quality photographic images of the maps is also a major consideration in using this method.

References Angela, D. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research [S.l.]. 19, 2. ISSN 1438–5627. Date accessed: 21 August 2020. doi:10.17169/fqs-19.2.2929. Curryer, B., Stancliffe, R.J., Dew, A., and Wiese, M.Y. (2019). Use of body mapping to explore key family relationships of with adults with intellectual disability (poster). Journal of Intellectual Disability Research, 63(7), 754.

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Dew, A., McEntyre, E. and Vaughan, P. (2019). Taking the research journey together: The insider and outsider experiences of Aboriginal and non-Aboriginal researchers. Forum: Qualitative Social Research, 20(1), Article 18. Dew, A., Vaughan, P., McEntyre, E. and Dowse, L. (2019). “Our ways to planning”: Preparing organisations to plan with Aboriginal and Torres Strait Islander people with disability. Australian Aboriginal Studies Journal, 2(3), 3–18. Gastaldo, D., Magalhães, L., Carrasco, C. and Davy, C. (2012). Body-map storytelling as re­ search: Methodological considerations for telling the stories of undocumented workers through body mapping. http://www.migrationhealth.ca/undocumented-workersontario/ body-mapping [Accessed: January 21, 2018].

6 MEANING-MAKING AND RESEARCH RIGOUR Approaches to the synthesis of multiple data sources in body mapping Susan Collings, Angela Dew, Bernadette Curryer, Isabella Dillon Savage, and Anna Tewson

Introduction Arts-based methods appeal to researchers because they offer the chance to gain unique insights about how people experience their worlds and novel ways to reflect on what they have seen and heard. The inherent diversity of methodologies and artistic activities involved in arts-based research is a well-recognised advantage (Rose, 2007). Body mapping is an arts-based method that is positioned at the intersection of research, community development, and art therapy. Arguably, to date, its relevance as a research tool has been seen as secondary to its power as a tool for advocacy and empowerment. Pioneers in body mapping research (Gastaldo et al., 2012) acknowledge that moving beyond description to a critical interpretation of body mapping data can be a challenge. As they have more re­ cently argued in their critical synthesis of the literature, body mapping is pre­ dominantly presented as a data generation method (Gastaldo et al., 2018). This edited collection represents an effort to address these criticisms and responds to the call for more empirically grounded work to progress the body mapping research field (de Jager et al., 2016). In this chapter, we consider how to approach research data available from body mapping to produce reliable and compelling results.

Doing justice to the visual data Body mapping can present researchers with a potentially large volume of data sourced from multiple modes of interaction with research subjects. This includes the visual images (body maps and photos) and accompanying key (table of symbols and locations); a written testimonia; written transcript of audio recordings made during body mapping; and researcher field notes made during the body mapping sessions and afterwards to record relevant information. Triangulation, the practice

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of cross-referencing data from two or more sources or methods, not only increases the level of confidence in results but also captures different dimensions of the same phenomenon (Merriam & Tisdell, 2016). Visual data introduces its own set of challenges for researchers. Symbols acquire significance from their specificity: they are particular to a person’s story and come to life in the telling. For this reason, incorporating the written accounts of the ex­ change that takes place in the course of body mapping into analysis is critical, and usually takes the form of a testimonia or a transcript. Analysis of this textual data using established qualitative techniques can reinforce a Western cultural primacy of word over image and reduce visual data to an illustrative rather than meaningmaking purpose. Gastaldo et al. (2018) note that researchers frequently take for granted that verbal data produced during body mapping sessions is incorporated into the final analysis. In contrast, Bagnoli and Clark (2010, p. 568) have argued that combined visual and textual analysis contributes equally to results since the re­ searcher can ‘interrogate the data on multiple levels’. In the case of body maps, a challenge in combining textual and visual analysis is to maintain the integrity of the maps and not reduce them to numerical values or disembodied themes. To avoid a subconscious privileging of verbal meaning-making, each study de­ scribed in this chapter utilised and adapted tested approaches to body mapping analysis which position the visual data as central to understanding participants’ ex­ perience complemented by narrative dimensions (testimonia and field notes). The following section describes these approaches to body mapping analysis and provides examples of how they were used in five studies, including adjustments made to enhance reliability and fit for different research contexts. Full details of results for Studies 4, 5, 6, and 8 are reported elsewhere (see reference list for details).

Narrative inquiry Humans tell stories to connect otherwise random events or ideas into a coherent beginning, middle, and end and may use oral, written, or visual mediums. Narrative analysis involves drawing on a number of methods for interpreting texts that share a storied form (Riessman, 2005). Narrative inquiry is an approach that interprets highly personal stories and discerns narrative typologies across stories. The aim is to understand how and why certain events are storied and acknowledge the subjective standpoint of the narrator and the interpreter (Merriam & Tisdell, 2016). Frank (1995) asserts that ‘the stories that people tell come out of their bodies … the personal issue of telling stories about illness is to give voice to the body, so that the changed body can become once again familiar in those stories’ (p. 2, cited in Boydell et al., 2018). A strength of narrative inquiry for body mapping is that it allows researchers to consider the person’s story in its entirety and resist an urge to fracture it into coding units for the purpose of generating themes (Boydell et al., 2018). A nar­ rative approach was used to explore the experiences of young people with psy­ chosis (Study 4) and the experiences of mothers having contact with their children

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in permanent out-of-home care (Study 8). In both studies, individual stories were united by narrative tropes. In Study 4, recovery was visually highlighted on body maps through dualities such as light and darkness, past and future, and body and mind. Recovery was conceptualised as a process and a medical model was chal­ lenged in representations of emotional healing and personal growth. Body maps and testimonia were used to create case studies that allowed the recovery trope to be presented through individual stories. Similarly, in Study 8, coping and survival were visually represented on body maps through dualities of despair and hope, past and future, and body and mind. Each story incorporated elements of loss and grief and efforts to survive and heal for the sake of children (Figure 6.1). Body maps and testimonia revealed individual variation in how mothers progressed towards coping with change. Both studies show that by analysing stories in their entirety, researchers can give voice to the individual and collective strategies used to overcome adversity (Figure 6.2). An example from Study 8 shows how a body map and testimonia can be used to create a case study. Excerpt from Jess’s1 testimonia: Jess lives with her youngest child and has another in foster care. She has been heartbroken since her oldest child was taken from her arms by the police. She is a proud Aboriginal woman and is angry that her daughter is being denied her identity by her carers, who are non-Aboriginal and call her by a different name. Jess’ trust has been betrayed too many times and she has been trampled on by everyone so keeps people away. She has taught herself to redirect her anger and stay strong so that she can get her daughter back. She wants to reunite her family but knows this means beating the legal system, which is her dream. A narrative approach is likely to be practical only with body mapping studies that involve small participant numbers and explore highly sensitive and emotionally

FIGURE 6.1

Jess’ body map

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FIGURE 6.2

Dreams of restoration

charged topics. As Riessman (2008, p. 10) notes, ‘telling stories about difficult times creates order and contains emotions allowing a search for meaning’. By incorporating a visual method, emotions that may be contained by oral storytelling are potentially able to be incorporated into meaning-making about difficult times. In terms of analysis, visual and written data are integrated rather than undertaken separately and then cross-checked to confirm the reliability of narrative tropes. Depending on the purpose, sample, and design, it may be necessary to comple­ ment narrative approaches with other methods.

Visual and textual content analysis Content analysis is used to analyse the frequency and distribution of recurrent words and phrases within oral, written, and audio-visual texts (Denzin & Lincoln, 2000). It can be used in deductive or inductive thematic analysis. Visual content analysis has been developed for use in research that includes visual data such as photo elicitation and photovoice (Rose, 2007). These approaches, like body mapping, generate both visual and textual data which are analysed separately and then compared to increase the reliability of results and identify divergent findings. Open coding of textual data, namely interview transcripts, testimonia, and researcher field notes, is performed to group common ideas, concepts, or experiences (Braun & Clarke, 2006). A repeated, iterative process is undertaken until saturation is reached whereby no new codes are generated and any duplication is resolved. Identified themes are discussed and documented. Visual content analysis is completed by dissecting the image into sections and then closely examining each component. For body mapping, a table of symbols and their stated meanings and locations is created – in the form of a legend or key. Symbolic references on the maps are coded using an identical method as with textual data and then grouped into categories to represent shared experiences. Themes are reached using constant comparison across both the textual and visual mediums. Table 6.1 presents a key created for Jess’ body map and Table 6.2 shows common symbols across the sample (in Study 8).

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TABLE 6.1 Key to Jess’s body map

Location

Represents

Symbol

Face

Blinded, deceived, and ignored by FACS Sorrow at loss of child Hopes to have a home Importance of her Indigenous identity Denial of child’s Indigenous identity Anger and suicidal thoughts Trust broken by caseworkers Christmas visit cancelled Late for contact at aquarium and worker left Loves and protects her children Police took baby from her arms Writes down negative feelings to stop self-harming No trust; alone Too little time with her daughter Hope to get her child back Will apply to court for restoration Her dreams have been trodden on

Covered eyes∗

Neck L top outside L shoulder outside L arm R shoulder Chest Torso Torso R torso R shoulder Torso Torso R wrist R knee R foot R heel ∗

Teardrops House and clouds Aboriginal flag, heart, ‘Wiradjuri woman’∗ word ‘identity’ crossed out Yellow lightning bolts Letter S, furry ball Christmas tree∗ Fish swimming Heart∗ and lion Word ‘flash’ and red/blue box Words ‘angry’, ‘fired up’, ‘hurt’, and lines Cactus Wristwatch∗ Words ‘never ending story’ ‘S90’, stars Blue bird

Refers to common symbols

Visual content analysis was used in Study 9. Constant comparison was under­ taken to proliferate codes from interview transcripts. These were organised into categories and preliminary themes were documented. A modified version of visual content analysis was performed to interpret the meaning of text and images placed on the body maps of four mother/adult child dyads. Images and text were coded according to location, type, and relevance to the research question. Visual content analysis contributed to a deeper understanding of the experience of giving and receiving support within a family where an adult son or daughter has an in­ tellectual disability. A pattern in the preference of images over text underlines the importance of applying non-language-based techniques in research with people with communication difficulties. Visual analysis was undertaken after preliminary themes had been developed using interview data which allowed new insights about the embodied experiences of mothers to emerge. For example, in Study 9, a participant with intellectual disability created an image of a ‘waterwheel’ between the heads of the two body outlines to symbolise the facilitator role of her mother and its impact on both mother and adult child. Another participant in Study 9 linked senses (sight, hearing, and speech) on her own and her daughter with intellectual disability’s

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TABLE 6.2 Common symbols across sample in Study 8

Common symbols

Meanings

Common location

Black clouds, lightning bolts∗ Covered eyes∗ Intact heart∗ Damaged hearts

Depression, despair, anger

Above head, outside outline Face Chest Chest

Clocks, watches∗ Torches, lamps, eyes, cameras Butterflies, knots, holes Weapons, cuts, feet ‘MUM’ words, tattoo Letters and dates Christmas trees,∗ flags,∗ homes, food, and tables ∗

Invisibility, shame, depression Maternal love Pain and devastation over the loss of child Desire for more time with children Being watched, judged, and under surveillance at contact Anxiety, fear, uncertainty Injured by structures, staff and self Motherhood is permanent state Children’s names, birthdays Rituals, family or cultural identity

Wrist, torso, outside outline Torso, outside outline Lower torso Torso, arms, legs Chest, arms Torso Torso, outside outline

Images also used by Jess.

body map to emphasise her maternal vigilance. Mothers represented the physical stress of caring through placement of lines or images on stress points such as shoulders, head, and stomach. In Study 6 conducted with Indigenous people with disability, cultural knowl­ edge and sensitivity was required during analysis. The maps were created by and to represent a community rather than an individual experience. This meant that mapping was a collective participant activity and maps contained images of local cultural significance including totems, land features, language, and symbols. The importance of the research team including an Aboriginal researcher was highlighted by a participant who, in conversation with a non-Aboriginal researcher, confirmed that an Aboriginal researcher would be involved in the analysis and write up so the cultural context and nuances were understood (Dew et al., 2019). Immediately following each of the community mapping sessions, all three researchers wrote extensive field notes which, alongside the audio recording of the groups and the photographs of the maps, formed the data sources. In her field notes, the Aboriginal researcher provided considerable detail about each community and her observations about some of the specific cultural references made by participants. Visual and textual content analysis of the mixed data sources was initially conducted by the two full-time non-Aboriginal researchers. Once initial analysis was completed, the emerging themes were discussed together with the Aboriginal researcher who further provided her cultural expertise to aid interpretation of the importance of the images and textual references and to discern the significance of issues presented across the five community maps.

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Axial embodiment A bespoke methodology for interpreting visual data generated in body mapping research called axial embodiment has recently been developed (Orchard, 2017). Drawing on anthropological critiques of how cultural constructions of the body have naturalised it, Orchard offers a method for structural analysis of symbolic and embodied experience called axial embodiment. This method is based on recogni­ tion that body mapping permits two distinct types of bodily experience to be re­ vealed: the individual and the social. The approach involves coding textual and visual data across the different layers of the body map. Orchard recommends counting each image, collage, word, or phrase that expresses a single idea across the different layers. The results are then tabulated to show the number of times text or images are used and where they are placed in relation to the body outline. Axial embodiment can help show patterns across a large group and reveal differences in the way individuals interact with body maps based on variables such as gender, culture, or age differences. The only example presented in this chapter where axial embodiment was in­ troduced at the point of body mapping, as opposed to used post hoc purely for analysis purposes, is Study 2. Participants were invited to divide their body map into two bodies: one depicting how anxiety feels and the other depicting ways to manage it. Axial embodiment coding was used to identify where these drawings were positioned by breaking each body into sections from head to toe. Body parts were then used as a template to explore bodily responses to anxiety or coping with anxiety, and the types of drawings used to depict these experiences. Although there was some consistency across the sample in the types of symbols used, the location, and feelings described, there was significant variation in whether these were connected to positive or negative associations with anxiety. To address this limitation, participants were invited to explain what the symbols on their two bodies meant, particularly more abstract and personal images, and this detail was recorded and used in interpretation. Study 5 adapted Orchard’s approach to axial embodiment to permit a more nuanced analysis of the nature of support for people with intellectual disability. Although Orchard (2017, p. 47) understood the support figure as a distinct ‘layer’ of the map, the researchers were more interested in whether support was re­ presented as internal or external to the body, and if placement was correlated with different types of support (internal capability vs. external supports such as family, friends, or services). A data table was created to tabulate each image, collage, word, or phrase that expressed a single idea and the location of these on different layers of the body maps. This quantified textual and symbolic representations on the map (background), on the body (physical outline), and the support figure (second bodies on the maps). Categorical analysis showed no apparent participant gender difference in the use of text versus images but images were far more common than text across the sample and a pattern was found in the high frequency of symbolic representations of support and logistics. Support was represented on the majority

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TABLE 6.3 Study 5 axial embodiment analysis subset

Gender

Text on map

Text on body

Text total

Images on map

Images on body

Image total

Support figure

F F F F F M M M M M

13 17 3 13 17 15 7 3 14 2

5 1 3 5 1 27 1 4 0 0

18 18 6 18 18 43 8 7 14 2

20 13 2 20 13 7 19 1 17 9

7 7 9 7 7 13 4 20 8 3

27 20 11 27 20 20 23 21 25 12

1 3 0 2 1 2 4 0 1 4

of maps predominately in the form of ‘stick figures’ and, in a few cases, as ‘angels’ or ‘good fairies’ placed on the shoulder of the body outline. There were additional variations on this with some participants signifying their family, friends, and support workers through the images of animals or landscapes, reiterating the importance of having a key to interpret the maps as these images would not be immediately recognised as ‘support’. Table 6.3 presents a sub-set of axial embo­ diment analysis for Study 5 across the sample. Axial embodiment was trialled in Study 8 to code images and text that related to time (past, present, and future), emotions (positive/negative), relationships (po­ sitive/negative), and support (present/absent). A data table was created to tabulate the location and type of image. In many cases, images and text were added to multiple categories. Symbols were more common than text to signify difficult emotions and relationships, and placement of both images and text was more common inside the body shape than outside, particularly in the chest, stomach, and head area. Participants were also far more likely to represent negative than positive emotions. However, axial embodiment did not permit analysis of the multiple layers of divergent images or words placed onto the same body part. Temporality – both in relation to the process of body mapping and the person’s own biography – was rendered invisible using this analysis method. Even the photographs of body maps used in axial embodiment analysis presented a fixed and ‘finished’ product, hiding the transient images beneath. These aspects were only available for analysis using a narrative approach, described previously, incorporating written data from researcher field notes and transcripts.

Combined approaches The six studies referred to in this chapter all used a combination of visual (the body maps and photos) and textual analysis with a close reading of written transcripts (Studies 2, 4–6, and 8) or listening to audio recordings of participants’ commentary

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during the body mapping process (Study 9), together with a review of researcher field notes and observations. This was crucial both in order to triangulate data sources for enhanced confidence in the reliability of results and to respond to methodological limitations encountered. In Study 5, the location chosen for text and images frequently appeared to be ad hoc rather than premeditated. Some participants drew support people inside the body to symbolise emotional closeness, whereas others placed figures seemingly at random on the background of their maps. Diversity in depictions of family, friends, and workers meant that these representations would not have been recognised as ‘support’ without reference to the co-constructed key to interpret the maps. Only by re-engaging with participants’ meaning-making could the researchers discern references of support. This reinforces the need to use multiple analytic methods and not reduce the body maps to categorical or numerical analysis alone. As explained previously, in Study 8, axial embodi­ ment was not able to discern symbolic expressions overlaid on individual body maps. In Study 9, some decisions about where to place images or text were influenced by the space available rather than intent. In other cases, although placement of images or text was intentional, choices were made in consultation with mothers. The influence of mothers over these placement decisions was not evident on the maps and was only revealed by listening to audio recordings of the body mapping sessions and reviewing written observations made on the day.

Conclusion This chapter shows that body mapping research creates as much opportunity for innovation with data analysis as it offers a methodology to generate rich data. There has been some criticism that analysis has been a neglected aspect of body mapping research in comparison with the use as a process for individual em­ powerment and community awareness raising. Synthesising visual and textual data analysis can be a challenge for researchers attracted to the body mapping method because of its rare ability to shed light on the lived experiences of marginalised groups and to tackle difficult and sensitive topics. In seeking to ensure the credibility of the method, it is critical that the power of symbols to convey meaning in ways that elude verbal or written expression is not lost. As the examples showcased in the chapter show, it is possible to develop hybrid analytic approaches to suit different research contexts and to take full advantage of the abundance of available data. Important, too, is the need to account for discussions that ground the body mapping process in situ and reveal the temporal limits of visual and arts-based methods. Researcher field notes can describe when, how, and why individuals overlay images created at different points during the process but a photographic record of the ephemeral nature of images would serve as a salient reminder of how embodied experiences refuse the neat chronology of both word and image.

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Note 1 A pseudonym.

References Aldridge, J. (2016). Participatory research: Working with vulnerable groups in research and practice. Bristol: Policy Press. Bagnoli, A. and Clark, A. (2010). Focus groups with young people: A participatory ap­ proach to research planning. Journal of Youth Studies, 13(1), 101–119. doi:10.1080/ 13676260903173504. Boydell, K.M., Ball, J., Curtis, J., de Jager, A., Kalucy, M., Lappin, J., Rosenbaum, S., Tewson, A., Vaughan, P., Ward, P. and Watkins, A. (2018). A novel landscape for understanding physical and mental health: Body mapping research with youth experi­ encing psychosis. Art Research International, 3(2), 236–261. Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Collings, C., Wright, A. C., Spencer, M. (2019). Family connections and contact study: Final Report. Institute of Open Adoption Studies, Faculty of Arts and Social Science, The University of Sydney. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 17(2), Art. 22. http://dx.doi.org/10. 17169/fqs-17.2.2526 [Accessed: January 19, 2018]. Denzin, K. and Lincoln, K. (2000). The Sage handbook of qualitative research (2nd Edition). Thousand Oaks: Sage Publications. Dew, A., McEntyre, E. and Vaughan, P. (2019). Taking the research journey together: The insider and outsider experiences of Aboriginal and non-Aboriginal researchers. Forum Qualitative Sozialforschung: Qualitative Social Research, 20(1), Art. 18. Dew, A., Smith, L., Collings, S. and Dillon‐Savage, I. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum Qualitative Sozialforschung, 19. doi:10.17169/fqs-19.2.2929. Frank, A. (1995). The wounded storyteller. Chicago, IL: University of Chicago Press. Gastaldo, D., Magalhães, L., Carrasco, C. and Davy, C. (2012). Body-map storytelling as research: Methodological considerations for telling the stories of undocumented workers through body mapping. http://www.migrationhealth.ca/undocumented-workersontario/body-mapping. Gastaldo, D., Rivas-Quarneti, N. and Magalhães, L. (2018). Body-map storytelling as a health research methodology: Blurred lines creating clear pictures. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 19(2), Art. 3. Merriam, S. and Tisdell, E. (2016). Qualitative research: A guide to design and implementation. San Francisco: John Wiley and Sons. Orchard, T. (2017). Remembering the body: Ethical issues in body mapping research. Cham: Springer. Riessman, K. (2005). Narrative analysis. In Narrative, Memory & Everyday Life, p. 17. Huddersfield: University of Huddersfield. Rose, G. (2007). Making photographs as part of a research project. In Visual methodologies: An introduction to the interpretation of visual materials (2nd Edition, pp. 237–256). Thousand Oaks: Sage. Solomon, J. (2002). ‘Living with X’: A body mapping journey in time of HIV and AIDS. In Facilitator’s guide. Psychosocial Wellbeing Series. Johannesburg: REPSSI.

7 DEVELOPMENT OF A WEB-BASED BODY MAPPING APPLICATION Bryn Ludlow

Introduction Body mapping is a participatory arts-based research method that can also be therapeutic (de Jager et al., 2016). In a body mapping session, participants can have their body traced, or they can work from a template to draw and write about any cognitive, emotional, or physical experiences, in and around the body map (de Jager et al., 2016). It is a research method involving collaboration be­ tween participants and facilitators; however, an individual can complete a body map on their own. As this systematic review illustrates, many authors have written about body mapping since the initial exploration and publication about the method in 1985 by MacCormack and Draper (1987). The process of creating this web-based body mapping application design was relatively simple, whereas the methodological consideration, and impact of the web-based body mapping application as a whole, is complex. This chapter addresses how researchers have developed approaches to body mapping with digital technology, and how I developed a digital, web-based body mapping application1 in 2011 during my Master of Arts thesis study. While developing this application, my goal has been to conduct research that will expand the current method of body mapping into the digital realm to include those that may not have the ability, time, or financial means to participate in a paper-based body mapping workshop. In its present state, the application can be hosted on a public domain, and has the potential to reach a wide audience of facilitators and people who are interested to complete a body map in a digital format. This web-based approach to body mapping can offer the possibility for anyone with Internet access to apply the method of body mapping to their work and research.

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Importantly, body mapping gives participants an opportunity to study in­ formation about their health and social experiences, as a form of internal ‘visceral geography’ (Sweet & Ortiz Escalante, 2015). The ‘map’ component of body mapping is intriguing; how and why is it a ‘map’? According to Blakesee and Blakesee (2008), ‘a map can be defined as any scheme that spells out one to one correspondence between two different things’ (Blakesee & Blakesee, 2008, p. 7). Each of us has a body map; without even doing body mapping, our body systems, such as our endocrine system, neurological system, skeletal system, and so on, are mapped out with intricate, individualised, and interconnected networks of nerves and tissues. Body mapping helps people understand these systems, and to reclaim their voice to express any issues that they have encountered. My first encounter with body mapping was in August 2006 while working in the ‘Global Village’ at the Metro Toronto Convention Centre for the 16th International AIDS Conference. In a corridor adjacent to the video lounge where I was working, I came across a selection of large colourful body maps that were hung as backdrops to the Stephen Lewis Foundation’s press greeting of the di­ rectors and producers of the film ‘Grandmothers: The unsung heroes of Africa’ by Marshall (2006). While reflecting on this inspiring experience of viewing the body maps at the AIDS Conference, and co-facilitating a workshop with Deb Singh at the Toronto Rape Crisis Centre/Multicultural Women Against Rape (TRCC/MWAR) on June 23, 2008 (Singh, 2008), I proposed to investigate the method of body mapping in my Master of Arts thesis study at McMaster University in 2010 (Ludlow, 2012). The study was held in the dialysis unit at the Toronto Rehabilitation Institute with five participants receiving daily haemodialysis therapy who completed three interviews and 12 body maps. Prior to this study, I volunteered weekly for four and a half years on the geriatric unit, and I visited patients before or after their appointments in the dialysis unit, but not while they were receiving treatment. While waiting for research ethics approval at Toronto Rehabilitation Institute and McMaster University, I developed a web-based body mapping application and kept an iterative design journal to keep track of what I completed on the design. The iterative design methodology involves three core stages of designing, testing, and retesting of a prototype (Zimmerman, 2008). It is effective, because the design that results has been through a phase of rigorous testing before entering the real world. In the body mapping literature, Solomon (2007) strongly suggests that facilitators create their own body maps before facilitating a session. Part of the process of designing the web-based application was for me to learn how parti­ cipants might use it during the interviews. The paper body map template that I created for participants was designed at 9 × 12′′, which was big enough to fit onto the bean bag laptop table that they used in the dialysis unit. The web-based body mapping application offered a similar condition to try out the method on a laptop computer screen.

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Literature review The literature about body mapping since its inception in 1985 has largely been project-based and focused on epidemiological issues affecting a community. Since 2008, research has expanded into technological approaches to body mapping. Between 1985 and 1992, there was a gap in the literature on body mapping. At this time, the world was experiencing an AIDS epidemic, which mobilised re­ searchers to respond to the medical, and the biopsychosocial needs of clients that were often neglected in the portrayals of people living with HIV/AIDS in the media (Seale, 2003). Also following the completion of the human genome project in 2001 (Webster, 2002), people became interested in personalised medicine, and tracking bodily sensations. In the early 2000s, the Bambanani women’s group met to create body maps (Blum, 2011) about their experiences of living with HIV/AIDS, and to create a smaller, mobile version of their body map, known as a tracing book so that they could continue keeping track of their health conditions when they returned home (REPSSI and CATIE, 2009; Solomon, 2007). The tracing book could be said to influence mobile and web-based approaches to body mapping. It is important not to confuse body mapping with pain mapping. Although both approaches involve writing and drawing on a representation of a body, body mapping offers the opportunity to map pain, and life experiences in-general (Solomon, 2007). In 1975, Melzack (1975) developed a tool that healthcare providers could use with patients, to ask them to describe their pain with a set of pain descriptors, such as ‘burning, tingling’, and subcategories, with his colleague, Torgerson. The middle section of the questionnaire offered patients or practi­ tioners the opportunity to draw or write about the pain on an illustration of a human figure facing forwards and backwards, and if it was internal or external to the body (Melzack, 1975). In an inspiring description of the innovation of this health communication tool, Melzack describes the gradual evolution of the questionnaire, and the moment when he came to realise that it could take the form of a questionnaire (Melzack, 2005). Prior to this, the assessment of pain was, to say the least, a painful experience that involved tests of physical pain thresholds using heat compresses directly on skin in the Dolometer test (Melzack, 2005). At the Association for Computing Machinery (ACM) Computer Human Interaction (CHI) conference in 2014, Jang et al. (2014) presented their online pain mapping tool called ‘Body Diagrams’ that helps people ‘… express symptoms via drawings and text’ (p. 1153). Focusing on ‘physically-orienting conditions’, Jang et al. (2014) found that ‘drawing about pain might be useful for differential diagnosis to determine how referred pain—pain that is in an area of the body that is pulling on a joint, for example, may be impacting one’s awareness of their pain’ (p. 1154). In the same year, Nummenmaa et al. (2014) created a tool called, ‘emBODY’, a ‘… computer-based topographical self-report method’ (p. 646). It is used to measure the accumulation, and concentration of participant responses to prompts. They compared global Eastern and Western responses to the prompts and found

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that emotions were similar across cultures on the ‘bodily sensation maps’ (Nummenmaa et al., 2014, p. 1). Similarly, Jaatun 2015 created a computer-based pain mapping tool for an iPad to support cancer patients with labelling their pain. The reason that one might want to shift their work in pain mapping from a form of current state mapping to a future state, goal-directed mapping, is, as Tarr and Thomas (2011) found, professional dancers were connected to their bodies as they mapped their pain, and they could, ‘… feel the pain while they were drawing it’ (Tarr & Thomas, 2011, p. 149). Tarr and Thomas (2011) emphasise the human need to describe pain when it is there, for the means of alleviating it. In a presentation, I attended in November 2010 at the ‘Health, Embodiment, and Visual Culture’ conference, Jenn Tarr of the London School of Economics discussed her study of pain mapping with dancers (Tarr, 2010). Dancers were invited to scan their bodies in a three-dimensional (3D) imaging machine (Tarr & Thomas, 2011). The images of the dancers’ bodies were then presented on a screen for the dancers to draw with a stylus, where they experienced pain from the rigors of dancing. The scanner only captured part of the head and cropped the bottoms of the feet; as a result, dancers reported that they felt uncomfortable when seeing these cropped areas on the image while drawing (Tarr & Thomas, 2011). Nevertheless, they were one of the first research groups to apply a technological way of mapping pain using a 3D scanner. Interestingly, the dancers reported that they often ignored their pain, and when they developed an injury, it was really painful (Tarr & Thomas, 2011). Harvard business professor Dr. Amy Cuddynotes that a simple shift of body position to an open stance builds up a greater resistance to pain (Cuddy, 2015). Perhaps the open postures that dancers are trained to carry while dancing might have caused this resiliency to their expression of their pain. This begs the questions if it may only be helpful to create a pain map to illustrate where the pain resides at the acute stage of pain and if illustrating a pain map may actually exaggerate one’s pain tolerance when they are tracking their pain on the map. At its core, pain management is goal-driven, and as Jang et al. (2014) found, pain mapping tools have largely neglected this core need to communicate pain. The need to communicate pain along with the need to eliminate it is an interesting challenge that pain mapping may effectively address on a short-term basis. In contrast, the biopsychosocial approach to pain that body mapping affords may assist with some alleviation for people with chronic pain; not all chronic pain experiences can be completely resolved. In fact, Bekkering et al. (2005) advise against mapping pain experiences, as it reasserts that there is pain, rather than trying to omit a negative stimulus. While using any form of health intervention, it is important to be strategic about when to use it, and for how long. Stinson et al. (2014) are the only re­ searchers to date who have included a goal setting feature on their pain mapping application to support the youth participants in their study with thinking about a future with little to no pain. The application was originally developed by Lalloo et al. (2014) using the iconic pain assessment tool.

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Theoretical perspective Technologies that listen to, look in, and assist with observing the body have ‘recapitulated’ the technologies of media and communications: scanners, screens, and magnification technologies are used in both domains but for distinct purposes (Berger, 2010). Importantly, Berger (2010) states, ‘… the genesis of medical imaging mimics the development of media of communication’ (p. 227). This thought aligns with the work of Canadian media scholar Marshall McLuhan (1994), who was the first to identify the social compulsion to control media, in stating ‘the medium is the message’, which emphasises that the technologies will change with societal development (McLuhan, 1994, p. 7). Ihde (2009) coined the term technoscience to account for the human interaction with technologies in the sciences. Over time, the variety of ways of looking in and at the body has de­ veloped from analog to advanced digital technologies. Technoscience is a postphenomenological approach that offers a way to ‘… probe and analyze the role of technologies in social, personal, and cultural life that it undertakes by concrete—empirical—studies of technologies in the plural’ (Ihde, 2009, p. 23). The application of technologies of everyday life to create a body map is a step towards a technoscientific approach to body mapping. Critiques on Ihde’s technoscience discussion refer to the Heideggerian approach to ‘Enframing’ technologies to be used indefinitely in life, and in potentially de­ structive ways due to the environmental resources that certain technologies such as paper rely upon, and Ihde rejects this notion (Zwier et al., 2016). Instead, he un­ derstands technoscience as part of everyday life and believes that the sociocultural connection with technoscience is ‘unavoidable’ (Dakers, 2008, p. 82). The ways that people use technologies work to extend the body’s ‘peripersonal space’, such as drawing and writing, are core actions in body mapping (Blakesee & Blakesee, 2008, p. 7). These acts are a way of making visible the subconscious thoughts, narratives, ideas, or conscious experiences on a body map. Since en­ countering body mapping, my interests have been to contribute to the development of technological approaches that can provide greater access to the method, such as the web-based application. Thus, the theoretical perspective that supports this work is from a technoscientific approach to understanding technology by Ihde (2009). Given this theoretical perspective, the following section will describe how I de­ signed and tested a web-based body mapping application with this technoscientific approach, the key influences on the design, and future directions of the application.

Application development While developing the application, I kept notes on an iterative design research journal, which I called the ‘Interactive touch screen body mapping application for haemo­ dialysis patients: An iterative design and research journal’ (Ludlow, 2012). When I created the application, I was initially interested to transform it into a mobile appli­ cation for the iPad, as it was new and becoming popular; however, iPad programming

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is quite involved, and at an advanced level that I have not achieved. As I designed the application, I also learned about some of the advanced techniques in ActionScript 2.0 by following Luka’s (2011) open source ActionScript 2.0 drawing application tutorial. At the time of designing the application, the website for the application was hosted on my McMaster University student web service folder. As I designed the application, I wrote about each stage of development in the journal, and also wrote about influences of the literature on body mapping on the application design. The journal served as a proof of the record of my development of the application, which I discussed in my Master of Arts thesis (Ludlow, 2012), and in a systematic review journal article about body mapping (de Jager et al., 2016). There are three journal entries from June 25, 2011 to July 23, 2011, and the following is a summary of each entry.

Iteration I: Buttons, lines, and colours (June 25, 2011) In the first iteration, I created three tests of the application to measure the functionality of the drawing application with the body map line drawing. The first

FIGURE 7.1

Body map test 1 – pathways of the vagus nerve

A web-based body mapping application

FIGURE 7.2

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Body map test 2 – a patient receiving haemodialysis therapy

test was very spontaneous, and I scribbled all over the body map to check if the drawing could appear on all parts of the map, and it did (Figure 7.1). It was exciting to see this happen, and the lines that I created mirror the pathways of the vagus nerve, which is responsible for nervous system signal processing between the brain, heart, and digestive system (Standring, 2015). In the second test, I created a body map as a scenario, to think about how a patient receiving haemodialysis therapy might express symptoms on their body map (Figure 7.2). I used common descriptions that patients shared with me when I was a volunteer on the geriatric unit, such as having headaches, and feeling tired in general.

Iteration II: Addition of the comprehensive colour palette (July 4, 2011) This second stage of development involved the programming of additional but­ tons, a comprehensive colour palette, and an eraser (Figure 7.3). The ActionScript coding for the eraser is the same for a white button. The new line thicknesses are

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FIGURE 7.3

Body map test 3 – expressing sensations with colour alone

useful, but to keep it simple, it is only necessary to have two options. I created a test image with the colours, and the experience was quite different, compared to using only two colours, as I felt that I could illustrate sensations such as cold on my shoulders, and sickness in my gut with colour alone, versus using text. I also experimented with a skin colour palette. It might be important to have a skin colour palette because it will help patients express their identity and independence and will support a stronger connection with the image that they are creating.

Iteration III: Design and layout changes (July 23, 2011) In this iteration, I changed the screen size so that it will fit with an iPad and/or other touch screen at 1024 × 768 pixels. With this change, the artboard became larger, and so I thought that it might be a good idea to centre the figure so that people can draw things around themselves. With a generic template of a body, this loss of image would be averted. In its current state, the web-based body mapping application is ready for ad­ ditional iterative design testing with participants, but it is not ready for public

A web-based body mapping application

FIGURE 7.4

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The web-based body mapping application

dissemination. There are two brush buttons, eight colours, an eraser button, a print button, and a trash bin to clear the page (Figure 7.4). The result of this iterative design work was the creation of the first web-based body mapping application.

Pilot testing of the app at the Creative Works Studio, St. Michael’s Hospital In April 2016, I co-facilitated a body mapping workshop with occupational therapist, Isabel Fryszberg, Creative Director of the Creative Works Studio, a community-based art studio affiliated with St. Michael’s Hospital in Toronto, Ontario (Unity Health Toronto). Members of the studio voluntarily signed up to participate in the workshop. At the workshop, participants spent two days creating a body map on brown recycled paper, with any art materials that were available at the studio. After they created their body maps, they had an opportunity to try the web-based body mapping application. Two participants tried the web-based ap­ plication and created one body map each. Before they began, I explained that the website did not save the data from their maps. Both participants created colourful maps and they tried to copy the map that they created in a paper form with the web-based application. They expressed that the interface was intuitive, and they experimented with using the different brush sizes and colours. Initially, they attempted to re­ produce the body maps that they created on paper during the workshop on the

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web-based body mapping application. They seemed to be having fun with the program, by adding other lines, shapes, and textures. They both said that they would prefer to create a life-sized map with the application if it was hooked up to a projector; a projector was not available that day at the studio. Neither participant wanted to save their web-based app as a PDF, or print it, as they felt that it was more like a sketch; they did not spend much time on the web-based application as they had already spent 3 hours to create their paper-based body maps. Both participants said that they enjoyed the process of using the webbased application and that they would try it again if the issues that they ex­ pressed could be resolved.

Discussion and recommendations This application allows one to create, send, and share a series of body maps. Patients, their family members, and health care providers can chart the progression of disease and its treatment. While using this application for body mapping, the same procedures outlined in Solomon (2007) and in Gastaldo et al. (2012a; 2012b) apply, including the creation of a portrait drawing, drawing and writing about any pain, sensations, emotions, and experiences, and drawing and writing about future goals. In its current state, the web-based body mapping application could be used effectively for facilitators to create their own body maps, as a way to experiment with the method without using art supplies. In a body mapping session, the de­ cision to share a completed web-based body map, or not, should rest entirely with participants. However, the risk of inadvertent sharing of web-based body mapping data is greater when it is created and stored online. Sinding et al. (2008) emphasise that arts-based research products may have inadvertent effects on an audience, so it is important to continue with a gradual iterative testing of the application while considering this. The iterative design process should also involve the creation of a strategic plan for effective dissemination of the application. Future approaches to body mapping with a technoscientific perspective may need to assess if the format of a body mapping session requires digital or analog technology, or if this question matters at all? Some of the concerns are resourcespecific, whereas other facilitators may wish to preserve the use of analog tech­ nologies such as paint and paper, even when it is possible to create a digital body map as a final product. Becker (2000) echoes this sentiment and states: … current discourses of technoscience, body, nature, and even life are often described as code, text, or information. On the one hand, classical dichotomies (body/mind, subject/object, man/machine) and their restrictions are dissolving; on the other hand, this discourse often reveals a hidden desire to ignore both the fragility and the sense-giving capacity of materiality. (Becker, 2000, p. 361).

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To preserve the material-corporeal experience that often occurs while using analog art supplies to create body maps, facilitators might wish to try a combi­ nation of approaches involving paper-based and web-based mapping; for example, they may use web-based body mapping with a projector to draw a body map against a wall, and then trace the wall-sized body map onto the paper to continue mapping in an analog format.

Digital body mapping after 2020 In the next 10 years, digital technology involving artificial intelligence, aug­ mented reality, and virtual reality will transform the ways that we think about body mapping. Ticho et al. (Chapter 8) have developed a body mapping virtual reality application that can be used to create a body map in VR and Edwards (Chapter 9) has been experimenting with wearable technology and body map­ ping. In the year 2020, and beyond, it will be important to think about a fifth technoscientific wave of body mapping as a global, geo-located, and immersive approach to mapping the body. At the same time, body mapping facilitators will need to teach other facilitators about the method and will need to reference pedagogical materials to develop courses, and accredited training programs. After 2020, body mapping will be mostly digital, but the affordances of using a digital pen, for example, will more closely mimic the affordances of using a standard pen in a body mapping session, and the digital-material divide will begin to connect with unknown effects. The unknown effects are worth exploring, as this method merges into a technoscientific approach, for practical, and ethical reasons. At the convergence of technological innovation and social action, I have found that there is a ‘double-up effect’ occurring, which is a term used in surfing when ‘… two waves meet, and their crests and troughs align …’. This ‘creates an extra powerful and larger wave’ (SwimOutlet, 2018, para. https://www.swimoutlet.com/guides/different-wavetypes-for-surfing6). The super wave eventually breaks, and it is very dangerous for surfers to get caught between them (SwimOutlet, 2018). As a metaphor for how innovations in technology meet the current state of social engagement with technology, the result of the double-up effect is unknown. There could be po­ sitive as a breakthrough, or it could be extremely detrimental, and I think the latter effect builds up incrementally, despite its force. The double-up effect is detrimental to everyday communications that aim to bridge the divide between innovations in technology and society, such as the example of Google’s AI that made a call to a hair salon. It turns out that Axios tried to confirm that the call actually took place, as the sequence of the exchange be­ tween the Google I/O and receptionist seemed too cut and dry (pun intended) (Axios, 2018). According to Axios, Google would not respond and will not confirm if the call content was edited so that it would be presentable at their recent demonstration (Axios, 2018). Really, what could have occurred in this example so that a breakthrough in AI communications took place is if Google gradually

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released the technology so that a ‘crumbly wave’ effect resulted (SwimOutlet, 2018, para. 6). The double-up effect can also be applied to our understanding of interdisciplinary, multidisciplinary, and transdisciplinary research collaboration. Gardner (2019) notes that different disciplines hold various theoretical assumptions on a research problem, based on the knowledge that they bring to the problem. Due to the climate emergency declared by many countries in 2019, it is important, and almost essential, for disciplines to collaborate (Haraway, 2016). To tap into the arts-based quality of body mapping, digital forms of body mapping like this web-based body mapping application have the potential to discover how artists, who often seek to break technology in order to make it work in innovative ways, can advance the method. Artists ‘seek failure’ as a means for discovering new avenues for creative outputs (Gardner, 2019), and they need to be included in the technoscientific development of body mapping research. Finally, it is important to note that this web-based body mapping application is not intended to be used as a diagnostic tool, nor as a medical intervention. It is not solely meant for the visualisation of one’s health experiences. I agree with Webster (2002), who states, ‘… developments in both genetics and informatics, dependent as they are on over-sophisticated socio-technologies, weaken the epistemological and professional authority of medical science and practice’ (Webster, 2002, p. 448). The contributions of researchers to the method of body mapping to date should be considered while using this web-based body mapping application, to continue the digital, and material explorations of the method of body mapping.

Note 1 The web-based body mapping application by Bryn Ludlow is Copyright© 2012 (Author and Owner). All rights reserved.

References Axios. (2018). What Google isn’t telling us about its AI demo. https://www.axios.com/ google-ai-demo-questions-9a57afad-9854-41da-b6e2-5e55b619283e.html. Becker, B. (2000). Cyborgs, agents, and transhumanists: Crossing traditional borders of body and identity in the context of new technology. Leonardo, 33(5), 361–365. Bekkering, H., Brass, M., Woschina, S. and Jacobs, A.M. (2005). Goal-directed imitation in patients with ideomotor apraxia. Cognitive Neuropsychology, 22(3-4), 419–432. Berger, E. (2010). Recapitulation, medical imaging technologies and media of commu­ nication: The medium is the message. Explorations in Media Ecology, 9(4), 225–238. Blakesee, S. and Blakesee, M. (2008). The body has a mind of its own: How body maps in your brain help you do(almost) everything better. New York, NY: Random House. Blum, A. (2011). Examination of ‘voices of women’ through visual narrative in dealing with issues of trauma, memory of violence, and HIV/AIDS in post-apartheid South Africa [Masters Thesis]. York University, Canada.

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Cuddy, A. (2015). Presence: Bringing your boldest self to your biggest challenges. London, UK. Hachette, UK. Dakers, J.R. (2008). Postphenomenology: In search of Ihde. In E. Selinger (Ed.), Postphenomenology: A critical companion to Ihde. Human Studies, 31, 77–85. doi:10. 1007/s10746-007-9074-5. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 17(2). doi: http://dx.doi.org/10.17169/fqs-17.2.2526. Gardner, P. (2019). Getting out of your silo: How and why you should? S MRTS seminars program [Webinar]. McMaster Institute for Research on Aging. Gastaldo, D., Magalhães, L., Carrasco, C. and Davy, C. (2012a). Research art exhibition of body maps. Toronto, ON: Toronto City Hall. Gastaldo, D., Magalhães, L., Carrasco, C. and Davy, C. (2012b). Body-map storytelling as research: Methodological considerations for telling the stories of undocumented workers through body mapping. Toronto, ON: Creative Commons. Haraway, D.J. (2016). Staying with the trouble: Making kin in the Chthulucene. Durham, NC: Duke University Press. Ihde, D. (2009). Postphenomenology and technoscience: The Peking University lectures. New York, NY: Suny Press. Jaatun, E.A.A., Haugen, D.F., Dahl, Y. and Kofod-Petersen, A. (2015). Designing a reliable pain drawing tool: Avoiding interaction flaws by better tailoring to patients’ impair­ ments. Personal and Ubiquitous Computing, 19(3-4), 635–648. Jaatun, E.A.A. and Jaatun, M.G. (2016). Advanced healthcare services enabled by a com­ puterized pain body map. Procedia Computer Science, 98, 251–258. Jang, A., MacLean, D. and Heer, J. (2013). Designing a prototype interface for visual communication of pain. In CHI’13 extended abstracts on human factors in computing systems (pp. 427–432). Toronto, Canada, ACM. Jang, A., MacLean, D.L. and Heer, J. (2014). Bodydiagrams: Improving communication of pain symptoms through drawing. In Proceedings of the 32nd annual ACM conference on human factors in computing systems (pp. 1153–1162). Toronto, Canada, ACM. Lalloo, C., Kumbhare, D., Stinson, J.N. and Henry, J.L. (2014). Pain-QuILT: Clinical feasibility of a web-based visual pain assessment tool in adults with chronic pain. Journal of Medical Internet Research, 16(5), e127. Ludlow, B.A. (2012). Body mapping with geriatric inpatients receiving daily haemo­ dialysis therapy for end-stage renal disease at Toronto Rehabilitation Institute: A qualitative study. [Master of Arts Thesis]. McMaster University, Hamilton, ON. Open Access Dissertations and Theses. https://macsphere.mcmaster.ca/handle/ 11375/12677. Luka. (2011). Making an interactive drawing pad. http://flashexplained.com/actionscript/ making-an-interactive-drawing-sketchpad/. MacCormack, C.P. and Draper, A. (1987). Social and cognitive aspects of female sexuality in Jamaica. In P. Caplan (Ed.), The cultural construction of sexuality (pp. 143–165). London, UK, Routledge. Marshall, L. (2006). Grandmothers: The unsung heroes of Africa. The Stephen Lewis Foundation (SLF). https://www.cinemapolitica.org/film/grandmothers-unsung-heroes-africa. McLuhan, M.A. (1994). Understanding media: The extensions of man. Cambridge, MA, MIT Press. Melzack, R. (1975). The McGill pain questionnaire: Major properties and scoring methods. Pain, 1(3), 277–299.

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Melzack, R. (2005). The McGill pain questionnaire. Anesthesiology, 103(1), 199–202 (Edited by S.N. Raja). Nummenmaa, L., Glerean, E., Hari, R. and Hietanen, J.K. (2014). Bodily maps of emo­ tions. Proceedings of the National Academy of Sciences, 111(2), 646–651. REPSSI and CATIE (2009). Tracking your health—A guide to creating a tracing book. https://www.k4health.org/sites/default/files/_Tracing%20Book%20web.pdf. Seale, C. (2003). Media and health. Thousand Oaks, CA, Sage Publications. Sinding, C., Gray, R., and Nisker, J. (2008). Ethical issues and issues of thics. In Knowles, G. and Cole, A. (Eds.) Handbook of the arts in qualitative research, 459-468. Singh, D. (2008). You are here: A body mapping workshop for queer survivors of sexual assault. In B. Ludlow (Ed.), Aware (pp. 6–7). Toronto, ON. https://caasa-accas. igloocommunities.com/documents/debsingh2008_youareherebodymapping_awarepdf Solomon, J. (2007). Living with x: A body mapping journey in the time of HIV and AIDS—A facilitator’s guide. In J. Morgan (Ed.), Psychosocial well-being series: Regional psychosocial support Initiative (REPSSI). Johannesburg, South Africa, REPSSI. Standring, S. (Ed.). (2015). Gray’s anatomy e-book: The anatomical basis of clinical practice. London, UK, Elsevier Health Sciences. Stinson, J.N., Lalloo, C., Harris, L., Isaac, L., Campbell, F., Brown, S., Ruskin, D., Gordon, A., Galonski, M., Pink, L.R., Buckley, N., Henry, J.L., White, M, and Karim, A. (2014). iCanCope with Pain™: User-centred design of a web-and mobile-based self-management program for youth with chronic pain based on identified health care needs. Pain Research and Management, 19(5), 257–265. Sweet, E.L. and Ortiz Escalante, S. (2015). Bringing bodies into planning: Visceral methods, fear and gender violence. Urban Studies, 52(10), 1826–1845. SwimOutlet. (2018). Different wave types for surfing. https://www.swimoutlet.com/ guides/different-wave-types-for-surfing. Tarr, J. (2010). Pain mapping, embodiment, and the ethics of representation [Oral Presentation]. Health, Embodiment & Visual Culture. Hamilton, ON Canada: McMaster University. Tarr, J. and Thomas, H. (2011). Mapping embodiment: Methodologies for representing pain and injury. Qualitative Research, 11, 141. doi:10.1177/1468794110394067. Webster, A. (2002). Innovative health technologies and the social: Redefining health, medicine and the body. Current Sociology, 50(3), 443–457. Zimmerman, E. (2008). Play as research: The iterative design process. In M. Ladly and P. Beesley (Eds.), Mobile nation: Creating methodologies for mobile platforms (pp. 25–36). Waterloo, ON: Riverside Architectural Press. Zwier, J., Blok, V. and Lemmens, P. (2016). Phenomenology and the empirical turn: A phenomenological analysis of postphenomenology. Philosophy & Technology, 29(4), 313–333.

8 BODY MAPPING AND VIRTUAL REALITY Sarah Ticho

Introduction What is virtual reality? Virtual reality (VR) is part of the family of emerging spatial computing tech­ nologies including augmented reality (AR), mixed reality (MR), and extended reality (XR) (Milgram & Kishino, 1994). Immersive technology uses 3D gra­ phics and special interfaced devices such as head mounded displays (HMDs) to fully immerse participants in digital environments, enabling more experiential forms of imagery and embedding participants in new worlds. VR enables par­ ticipants to embody new avatars, and disembody from their own sense of self, creating powerful interactions and emotional responses that have the potential to shape behaviour and perception of the world. These digital tools are expanding the potential of human computer interaction (HCI), integrating body sensors, ranging from hand and eye tracking to biometric integration, involving heart rate and galvanic skin response to increasing options interact with digital ex­ periences. In this chapter, we refer specifically to immersive VR, rather than mobile VR (passive 360 experiences). Although the potential of VR to enter the mainstream has been subject to ongoing debate, the launch of untethered VR hardware, such as the Oculus Quest and HTC Vive Focus, is transforming the immersive landscape, increasing af­ fordability and physical access. Further, the advent of game engines such as Unity, Unreal, and open source development frameworks such as WebVR (A-Frame, Mozilla) are empowering creatives to experiment and develop applications that can be easily shared and accessed globally. VR has commonly been known for its applications across entertainment and gaming; however, VR has been utilised across a number of industries from entertainment to manufacturing, education,

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training, health, and wellbeing. For over 30 years, it has been applied extensively in the field of behavioural healthcare, including the treatment and analysis of mental health problems including phobias, anxiety, depression, and pain man­ agement (Mallari et al., 2019; Valmaggia et al., 2016). Slater and Sanchez-Vives (2016) state that ‘… we have stressed novel applications and approaches and how the real power of VR is not necessarily to produce a faithful reproduction of “reality” but rather that it offers the possibility to step outside of the normal bounds of reality, and realise goals in a totally new and unexpected way’. A number of VR programmes and tools for visualising lived experience in a therapeutic context have demonstrated its effectiveness, including the use of AVATAR therapy, enabling people to visualise and confront their auditory hallucinations (Craig et al., 2015) and compassion therapy through body swapping experiences (Osimo et al., 2015). Yet while many experiences have been topdown and instructive, artists and psychologists are now exploring more emergent uses for VR, behavioural healthcare, and creativity. For example, bespoke play therapy experiences such as Virtual Sandtray, allows participants to depict their dynamics in a safe, non-judgmental environment, offering easy access to a wide variety of tools and objects (Stone, in press). Hacmun et al. (2018) explored the potential of using VR for art therapy, particularly the ways it can enhance existing creative processes through integrating 3D drawing tools, sculpting, and bespoke environments. Already, 3D painting and sculpting programmes have had major success in the world of VR, with a number of existing 3D drawing platforms such as Google Tilt Brush, Oculus Quill, Oculus Medium, Blocks, Gravity Sketch, Mozilla A-Painter, and Masterpiece VR are used by a wide range of practitioners, who are able to create sculpture illustrations in virtual worlds, export and share them directly to social media sites and 3D drawing platforms such as Google Poly.

Translating body mapping into VR Body mapping has demonstrated its applications across various digital technologies, from the web to wearable technologies (for example, Chapters 7 and 9), and how such approaches may offer additional value to the existing analogue process. The translation of body mapping into a VR environment has the potential to increase adherence, and enhance engagement through occluding external distractions, and motivating participants to continue to engage in their care through offering a playful and visually compelling experience. Such digitally mediated environments are unrestricted by laws of physics and provide essentially limitless access to a wide variety of creative possibilities. Emotionally engaging environments and interactive drawing tools, such as electricity, fire, smoke, sculpting tools, and so on, can increase a sense of awe (Yaden et al., 2018), and reduce artistic and technical barriers to art creation. Below is a description of the process the team have developed for engaging in a VR body mapping experience, and the theories underpinning such applications.

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Image of Hatsumi virtual reality body mapping environment built within Unity games engine, including drawing palette and paintbrush controller

FIGURE 8.1

Mindfulness and onboarding An essential element of the body mapping experience is onboarding participants and taking them through a body scanning exercise. Previous research by de Jager et al. (2016) describes the value of using mindfulness to help participants explore being in the present moment and think creatively about their experiences and how to visually and aurally translate them. VR has been applied extensively as a means to improving mindfulness and relaxation (Rizzo & Koenig, 2017); due to the immersive nature of the experience, distractions are minimised. By creating environments that create a sense of calm, this can increase the speed and ease to which participants can achieve a mindful state (Outlaw, 2018; Yee & Bailenson, 2007). Within the VR experience, participants undertake a body scan mindfulness-based experience combined with a tutorial on how to use the software. Alternatively, a facilitator would lead the participant through a body scan before they enter the VR experience, which represents a simple but calming environment using dark blue hues, small white particles, and binaural sounds.

Illustration Traditional body mapping typically invites participants to trace around their body onto a large piece of paper; however, the VR experience enables them to choose a life-sized 3D avatar, which operates as a canvas upon which they can draw – both inside the body, outside and on the skin. The development prototyping began with seeking an androgynous online avatar which could be integrated into the experience. However, due to a lack of appropriate body shapes, the team created a bespoke androgynous avatar which scales directly to the participant’s height within the experience. In future, there is scope to further customise the avatar to mimic the participant’s shape and dimensions, zoom in to specific body parts, and choose

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Virtual reality body mapping image created by artist Lisa Finch. The dotted lines in the image are animated and move in and around the body

FIGURE 8.2

specific positions to place the body in. Already, tests have been developed whereby the team integrated a 3D scan of participants, so they could illustrate onto their own bodies. It was found that if the avatar looked too much like them, this can be distracting away from the task itself. It has been concluded that an abstraction of themselves may be more appropriate for a body mapping task. The development team created a user interface (UI) in the form of a digital painting palette. The palette contains a series of bespoke drawing tools including fire, moving lines, and solid brush strokes, and variety of colours are available to select from. Dynamic drawing tools are commonly requested, and already moving lines have been developed into the experience, and currently tools such as electricity, fizzing, and pulsating at beginning to be built in. While designing experiences with a service user in mind, it is of vital importance to ensure that it is developed with as well as for people with lived experience. Therefore, during the development process, we have consulted with a broad range of people to advise on further development. In future, an option will be built in to enable the wider community of participants to be able to request drawing tools and additional features. The team are currently investigating incorporating a sound palette, by which participants can also construct soundscapes to accompany their illustrations. Finally, an optional audio recording is also integrated to enable them to verbally contextualise their illustration and describe the significance of their artworks. This often manifests as conversation between the facilitator and participant, and is captured in the headset microphone. This enables both the participants and facilitator to refer back to this at a later date.

Archiving and analysis Archiving body maps has historically been problematic. Time, effort, and emotion have been invested in this artwork, which marks an important part of participant identity and experience, so naturally, participants wish to keep hold of them. By creating illustrations in a digital environment, it is possible for all involved parties to keep copies. Following their illustration, participants have the opportunity to

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anonymously save and share their body maps own and explore those of others to gain insight into the often-hidden world of lived experience. Yet, beyond saving and sharing individual files, there is scope to create a more advanced archival system. Rich sources of data can be accessed and analysed with the potential to be utilised across research and diagnostics. The development schedule includes plans to integrate a machine learning algorithm to body map datasets to enable a meta-analysis of body map creations, subsequently creating new forms of data visualisation, knowledge, and insight into the phenomenology of lived experience. It will be possible to filter through illustrations based on labels and data points including the following: • • • • • • • • • • •

Time and date Geographical location Mood/condition/experience explored Colours and textures used Spatial organisation (for example, where on the body, around the body they have drawn) Sound Dialogue (audio description of illustration by the participant) Words or images integrated Gender Age Cultural background

Based on these factors, there is scope to create analysis on how different experiences or cultural background can influence how people visualise lived experience. Additionally, there is scope to integrate interactive standardised surveys quantitative measures such as wellbeing surveys before and after the experience. A comparison of qualitative and quantitative data can offer richer forms of understanding and insight into lived experience, and has significant implications for healthcare and research.

Uses and applications to chronic pain Since the beginning of the development of translating body mapping into a VR experience, feedback from the wider clinical VR community have recommended the value of applying body mapping to chronic pain. Chronic pain indiscriminately affects a large proportion of the population. Of the UK population, 43% live with chronic pain (Fayaz et al., 2016), with opioids claiming the lives of nearly 100 people every day, the majority of which live with some form of long-term pain. Many pharmacological analgesics are often unsustainable and ineffective form of long-term treatment, which often has far more complex and psychological origins. VR is showing promise in the application to the management of pain, and is part of a larger growing movement described as digital pharmaceuticals, defined by the Digital Therapeutics Alliance as ‘a new generation of healthcare that uses innovative,

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clinically-validated disease management and direct treatment applications to enhance, and in some cases replace, current medical practices and treatments’. Most commonly, VR has been used as a distraction tool, and therefore has had more effect on acute rather than long-term chronic pain. By immersing people in new environments, the experience occupies a large cognitive load. The Gate Control Theory proposed by Melzack and Wall, and Multiple Resources Theory by Wickens ( Johnson, 2005) describe the underlying neural mechanism of distraction analgesia. Hoffman et al. (2006) created SnowWorld, an icy VR environment that invites burn victims to throw snowballs at penguins during painful procedures. It was found that VR reduced the experience of pain by 35–50% both in standardised pain scales and half the pain-related brain activity than expected. Combining painkillers with VR was found to be the most effective, compared with the standard medication-based treatment or even combining painkillers with non-immersive console-based games like Nintendo. However, body mapping exercises do quite the opposite, and invite partici­ pants to sit with their pain, and approach it with a form of curiosity. Body mapping has the potential to be applied as a form of Acceptance and Commitment Therapy (ACT), to help people reflect on their emotional and psychological response to pain, gain new perspectives, and explore ways to renegotiate their relationship with it (Vowles et al., 2014). In a study by Ambron et al. (2018), victims of phantom limb would engage with VR games that allowed for real-time visualisation of limbs using an HMD. Results found this illusion of visualising their limbs within a virtual environment caused a significant reduction of pain im­ mediately after each VR session, and their pre-session pain levels also decreased greatly over the course of the study. As part of the development schedule, we are investigating how once participants have visualised their pain, participants can also begin to manipulate their illustrations using their bodies. Existing research has demonstrated the efficacy of biofeedbackbased VR experiences to reduce chronic pain, much like placebo, through being able to give the illusion of control over visual representations of pain; this has potential to change our perception of pain too. For example, Tong et al. (2015) developed the Virtual Meditative Walk, participants were connected to an HMD with incorporated biofeedback sensors. The experience offered a mindfulness-based stress reduction (MBSR) meditation and connected real-time immersive visual signals and sonic feedback with their physiological biofeedback data. The body ownership illusion (also known as the body transfer illusion) explores how we can interrupt the visual association between touch and visuals to create the illusion that another limb is part of our body. Building on the research of the body ownership illusion, the next stage of the VR body mapping development is to investigate how if externalised illustrations of pain can sub­ sequently be manipulated. If the participant has an increased emotional con­ nection to the visualisation of their pain, by beginning to manipulate the visualisation with their body, can this equally change the participant’s perceptual

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Virtual reality body mapping image created by Liam Waters. This illus­ tration demonstrates both their mental and physical experience during their recovery from a severe shoulder injury

FIGURE 8.3

experience of pain? The ambition is to integrate biosensors into the experience (including heart rate and galvanic skin response), enabling people to manipulate the size and shape their illustrations through their own biometric data. The team intend to investigate if over time, this will be able to reduce people’s ongoing experience of chronic pain, and rewire faulty neural pathways associated with chronic pain. Through repeatedly engaging with the VR body mapping, the hope is that this will enable people to challenge their existing conceptual systems and learning to reorganise perception associated with chronic pain, developing increase physical and interoceptive awareness (see 8.2 8.3 8.4). Bringing body mapping into a digital space requires further ethical con­ siderations in regards to the safety and wellbeing of participants. Throughout planning and development, we continue to review and debate how best to protect the interests of all involved.

Psychological safety Typically, body mapping sessions are facilitated by a psychologist or profes­ sional. Digitising the body mapping experiences means that people have the ability to engage in a body mapping alone. Given the heightened nature of the VR experience, there is high risk that this may bring up traumatic experiences, or increases the physical experience of pain. Ensuring that there are links to additional support and access to trained therapists is important. At this stage, we believe it is best to have a VR body mapping session facilitated

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Virtual reality body mapping image created by artist Clare Plumley. This is an illustration of her experience of chronic pain

FIGURE 8.4

in person. Furthermore, VR can cause ‘cybersickness’, nausea and dizziness can result from the experience, and therefore participants are recommended to stop if they feel unwell.

Data and privacy This research invites people to save and share their own body maps with the intention that others can witness their illustrations. Full informed consent is required before participating in a session, with clarity on exactly how and where their data will be used. Consent may also be recalled at any point. Participants who create body maps should have full ownership of their creations, and grant access to researchers and organisations who wish to use it. Data hacking and misuse of data gathered in VR is also possible. We intend to liaise with data security consultants to ensure that all personal data are encrypted and protected.

Representation and effect of perceptual manipulation As described earlier in the chapter, VR experiences and especially avatar visualisations can manipulate our perception of self. For example, ‘Users have experienced increased self-objectification after embodying sexualized avatars and self-imposed stereotypes’ (Hoselft, 2019). It is important to ensure that there are a variety of avatars/bodies that are representative of the populations which will use them. Furthermore, Yee and Bailenson (2007) describe the Proteus effect, the effect of digital representations of the self and how they affect our behaviour, within and

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following the experience. Although the ambitions of VR body mapping may also share this goal, consideration of the design of the experience and how avatar representation may affect participants’ long-term perception of self is of vital importance.

Accessibility and inclusion VR has typically not been built to accommodate neuro and physically diverse au­ diences, with very few experiences considering how to support people who are visually impaired or hard of hearing. Subtitles and haptics may offer more in­ clusive input and outputs. Alternative gestural inputs such as gaze-based interaction can have value in enabling people to interact with the programme in alternative forms; however, more research and development into this area is required. Current HMDs rely on motion controls and require users to take certain po­ sitions (that is, standing). Advances have been taken to ensure that users are able to engage in activity by both sitting and standing. There is recognition of different levels of complexity for people with complex needs, and of the opportunity for a carer to facilitate them in a virtual environment.

Co-design and involving the patient voice As the VR adaptation of body mapping is being developed at this stage for people with lived experience of pain and mental health problems, the programme must be designed with the participant in mind. Therefore, co-design is at the heart of the development, ensuring that each element of the experience meets the requirements of intended users from overall user experience, to the design of the drawing tools. Body mapping sessions will be developed with people with lived experience to ensure that the drawing tools are reflective of their experience. However, trial and error will also factor into the development of the programme, and over time, a wider toolset will be built, creating a variety of drawing palettes and sounds for users to choose from.

Social sharing Offering the ability to explore and share one’s own body maps has the potential to enable new forms of insight and empathy from both direct stakeholders and the wider public. However, in an age of social media and the ongoing desire for social confirmation, could online sharing of body maps, even if anonymously, be performative and provide an inauthentic representation of the self ?

Conclusion The use of body mapping in VR has vast potential as a transformative, participatory research tool to effectively remediate the effects of stigmatisation and prejudice and expand its value and appeal to a wider range of demographics. From people living

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with specific invisible conditions, from depression and anxiety, to synaesthesia, chronic pain, and beyond. As VR becomes more accessible, it can enable wider global access to people, and provide opportunities for people to holistically reflect on the nature of their emotion, pain, and life stories in a safe virtual environment. In future, there may be additional scope not only to produce body maps in a virtual space but also to physically embody, share, and compare them. Further research could investigate how wearing personal body maps in a virtual environment could affect behaviour, especially wearing illustrations of positive personal experiences that could improve confidence long term (see Chapter 10 on wearable body maps). Although VR as a clinical intervention is still developing, body mapping in VR is demonstrating its potential uses in a number of use cases and when applied and used in an ethical way, could increase engagement and useful data in research and therapy. Environments may also be adapted to offer an ‘exposure’-based experience prior to body mapping, to further improve recall of specific moments or places related to their experience (although at the point of writing, this has not yet been developed). Building on comparison of quantitative and qualitative methods for analysis, there is also potential to integrate additional layers of body visualisation. There is scope to visualise ‘layers’ of the self, from standardised pain surveys, to visualising the skeletal system, muscular system, and even learn to different between subjective emotion and physical pain in body mapping. This collage of the self can have value in revealing the different layers of lived reality within a person. The development team is currently working with the developers behind MorphoSource, an open source data archive that allows researchers to store, organise, annotate, and distribute 3D data. At the time of writing, we have developed an early new body mapping prototype, translating the existing software built in Unity into WebVR, a web-based VR experience which can be accessed through an online browser. A standard avatar was imported in the virtual environment, upon which users can add nodes to annotate onto, and measure distances. Further development will enable the full experience to be integrated, including the previously described 3D drawing tools, sound, and optional environments. Through this software, illustrations will be able to be developed and saved onto an online archive. Through creating an open source platform with a strong ethical framework attached, this will increase wider cross-disciplinary collaboration, enabling others to be able to utilise VR body mapping to benefit patients and the wider research community.

References Ambron, E., Miller, A., Kuchenbecker, K.J., Buxbaum, L.J., and Coslett, H.B. (2018). Immersive low-cost virtual reality treatment for phantom limb pain: Evidence from two cases. Frontiers in Neurology, 9, 67. doi:10.3389/fneur.2018.00067. Craig, T., Rus-Calafel, M., Ward, T., Fornells-Ambrojo, M., McCrone, P., Emsley, R. and Garety, P. (2015). The effects of an audiovisual assisted therapy aid for refractory auditory hallucinations (AVATAR therapy): Study protocol for a randomised controlled trial. Trials, 16, 349.

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de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body mapping, FQS, 17(2), Art. 22. doi:http://dx.doi.org/10.17169/fqs-17.2.2526. Fayaz, A., Croft, P., Langford, R., Donaldson, L. and Jones, G. (2016). Prevalence of chronic pain in the UK: A systematic review and meta-analysis of population studies. BMJ Open, 6(6), e010364. Hacmun, I., Regev, D. and Salomon, R. (2018). The principles of art therapy in virtual reality. Frontiers in Psychology, 9, Article ID 2082. Hoffman, H.G., Richards, T.L., Bills, A.R., Van Oostrom, T., Magula, J., Seibel, E.J. and Sharar, S.R. (2006). Using FMRI to study the neural correlates of virtual reality analgesia. CNS Spectrums, 11, 45–51. Hoselft, D. (2019). Making ethical decisions for the immersive web. Mozilla. https://arxiv. org/pdf/1905.06995.pdf [Accessed: July 20, 2019]. Johnson, M. (2005). How does distraction work in the management of pain? Current Pain and Headache Reports, 9(2), 90–95. Mallari, B., Spaeth, E., Goh, H. and Boyd, B. (2019). Virtual reality as an analgesic for acute and chronic pain in adults: A systematic review and meta-analysis. Journal of Pain Research, 12, 2053–2085. Milgram, P. and Kishino, F. (1994) A taxonomy of mixed reality visual displays. IEICE Transactions on Information and Systems, E77-D, 1321–1329. http://citeseerx.ist.psu.edu/ viewdoc/summary?doi=10.1.1.102.4646. Osimo, S.A., Pizarro, R., Spanlang, B. and Slater, M. (2015). Conversations between self and self as Sigmund Freud—A virtual body ownership paradigm for self-counselling. Scientific Reports, 5, 13899. doi:10.1038/srep13899. Outlaw, J. (2018) How XR environments shape user behavior. https://medium.com/@ jessica.outlaw/how-xr-environments-shape-user-behavior-37d8a150c786. Rizzo, A. and Koenig, S.T. (2017). Is clinical virtual reality ready for primetime? Neuropsychology, 31(8), 877–899. Slater, M. and Sanchez-Vives, M.V. (2016). Enhancing our lives with immersive virtual reality. Frontiers in Robotics and AI, 3, 74. Stone, J. (in press). Extended (XR) therapy: The use of mixed, virtual, and augmented reality in therapy. In R. Kowert and T. Quandt (Eds.), The video game debate (Vol. 2). New York, NY: Routledge. Tong, X., Gromola, D., Choo, A., Amin, A., Shaw, C. (2015). The virtual meditative walk: An immersive virtual environment for pain self-modulation through mindfulnessbased stress reduction meditation. In Virtual, augmented and mixed reality, Sumaker, R. and Lackey, S. (eds). Geneva, Switzerland, Spriner Publishers, 9179, 388–397. Valmaggia, L.R., Latif, L., Kempton, M.J. and Rus-Calafell, M. (2016). Virtual reality in the psychological treatment for mental health problems: A systematic review of recent evidence. Psychiatry Research, 236, 189–195. Vowles, K.E., Fink, B.C. and Cohen, L.L. (2014). Acceptance and commitment therapy for chronic pain: A diary study of treatment process in relation to reliable change in disability. Journal of Contextual Behavioral Science, 3(2), 74–80. doi:10.1016/j.jcbs.2014.04.003. Yaden, D.B., Eichstaedt, J.C. and Medaglia, J.D. (2018). The future of technology in positive psychology: Methodological davances in the science of well-being front. Frontiers in Psychology. https://doi.org/10.3389/fpsyg.2018.00962. Yee, N. and Bailenson, J. (2007). The Proteus effect: The effect of transformed selfrepresentation on behavior. Human Communication Research, 33(3), 271–290.

9 WEARABLE TECHNOLOGY AND BODY MAPPING Geoffrey Edwards

Introduction Body mapping is first of all an existing practice, carried out across a range of contexts (de Jager et al., 2016), primarily focused on allowing people to explore emotional and visceral responses or expressions in relation to their own bodies, typically through a performative act of drawing. Many applications are oriented towards mental health issues (de Jager et al., 2016). The practice may have an individualised therapeutic rationale, but may also be incorporated into efforts to understand collective responses to body-related experiences, or simply to deepen understanding of our relationship to our bodies. There is, of course, a developing framework for situating performative learning opportunities, albeit one that may still be controversial in some spheres or com­ munities. Butler (2006) described gender as a performative act, and others have proposed similar performative contexts for other aspects of identity and enable­ ment (for example, autism and performative acts in terms of ordered or disordered bodies (Lester & Paulus, 2012), or race as having performative dimensions (Ehlers, 2006; Warren, 2001). Enablement itself is fundamentally performative; for the benefits to accrue, enabling acts must be undertaken (Ehlers, 2006). Body mapping may be viewed within such a context (Magliocco, 2014), as a means to enabling, that is, creating a new relationship with respect to one’s own body and/or those of a collective (Gemeinboeck & Saunders, 2014). In this context, the question may be raised: what other complementary per­ formative acts may be used in this context, and do these alternative acts generate similar benefits, or might these be different? We investigate one such alternative performative act, that of wearing body maps. One of the great advantages of existing body mapping practices based on drawing is that they require very little overhead to undertake. The only

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technologies required are paper and pencil, albeit large pieces of paper and perhaps more than one colour of pencil. The same is not the case for wearable body maps, even the simpler forms that might be created out of fabric and thread. These take time and effort to construct. In the context of more advanced technologies, the time required for design and construction can easily surpass the time required for validation and use. As a result, our effort has so far been oriented towards the first phase of this work, that is, the design problem, and not towards the second, the need to assess effectiveness. However, it is hoped that the kinds of considerations that have come into play during the design and development phase may render this contribution of relevance and of interest, even though a more complete assessment will have to await another day.

What is meant by a wearable? In the introductory paragraphs, the idea of a garment is mentioned. Clearly, a garment could be a kind of wearable, but are all wearables garments? Also, what is the relationship between a garment, a wearable, and the ways in which we invest our bodies with meaning? Wearables are, in general, understood to be a technology that one carries au­ tonomously and effortlessly (Huang, 2000). With regard to the latter, Huang suggests that the technology should run continuously and be hands-free. She was referring primarily to computers. Today, although most wearables are technically computational devices, they may have very restricted functionality, and in that sense are different from canonical computers. Most current wearables are not, in fact, garments. In the market, one finds a panoply of different types of wearable, ranging from bracelets, watches, eye glasses, earphones, necklaces, brooches, shoes, belts, harnesses, as well as some garments such as shirts (Hurford, 2009). The number of wearables currently implemented into garments is still relatively small, although there are expectations that these will eventually dominate the world stage (Kirstein, 2013). Currently, wearables are one-off devices. There is no tendency to integrate several wearables into any kind of collective or aggregate system. In the context of an application that elicits questions about the relationship between self and body, however, it is important to identify questions that may be outside the typical assistive technology discourse. In general, there are several ways in which wearables could be used to support body mapping. Kim et al. (2004) discuss four kinds of wearable interface, which they called body-inspired metaphor (BIM), body-as-interaction-surface (BAIS), object mapping (OM), and mixed mode (MM). These are actually the variations of direct body-based interfaces (what they called BAIS) and various metaphorically mapped functions – their study aimed at looking at ease of use of the different interface modalities. Indeed, they showed that all three metaphorically organised interface modalities were easier for users to learn and use, and resulted in less errors committed. In addition, one might classify interaction modalities into four types,

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which we might call the static, passive, active, and collective perspectives. Static wearables will only offer visual supports for viewing technologies such as aug­ mented reality (AR). Passive wearables will include sensors that capture and record data but do not actively interact with the environment. Active wearables offer bidirectional interaction with either the body or the environment or both. Finally, collective wearables enable technologically mediated interactions between bodies (that is, people). Further, the population of body spaces with technological devices, as well as the interaction between these devices, people themselves, and the cloud (Internet), is best understood within an ecological framework (Edwards, 2017). This has the advantage of ensuring humans are understood as playing an organic role within systems that also include technologies. At this point, it will be unclear to the reader how the technology can be used to support body mapping. In the next section, a prototypical body mapping appli­ cation is described, which should allow more informed discussion of the different possibilities involved in wearable body mapping applications.

A basic body mapping app A basic body mapping app should do two things. It should provide a way to experience a person’s own body maps (and those of other people) viscerally, as a kind of ‘second skin’, and it should also provide a way to create a body map in a simple and intuitive way. To achieve this, we have been using a class of tech­ nologies called AR. AR, in a nutshell, provides the means to superimpose virtual elements or features into our direct experience of the real world (Schmalstieg & Hollerer, 2016). This separates it from virtual reality (VR), where immersive experiences are provided within an artificially created sensory environment, al­ though there are strong overlaps between the two approaches. The key challenge for good AR concerns the integration of the virtual ele­ ments with the direct sensory environment. The more successfully the virtual elements appear to be ‘directly present’ in the direct environment, the more successful the AR experience delivered to the user (from a purely technological perspective – whether the experience is emotionally compelling requires a dif­ ferent assessment). There are different means to achieve this integration, some more successful than others. In general, the problem consists of tracking, within the visual field, a reference location that will be used to anchor the virtual elements into the perceptual space. A common way to do this is to use what is called a ‘target’ – typically, a distinct and unique patterned image that can be identified in the visual field and whose location in space can be extracted in real time as it moves around. More sophisticated (and generally more costly) methods may dispense with the use of a distinct target, but for the basic body mapping app we have developed, the target offers a reliable method that can be achieved with little investment.

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Further, the technology is mature enough that there exist a number of software development environments for implementing AR – one simply needs to activate the relevant functions within these APIs to do the work of recognising a target pattern, tracking it, and, eventually, superimposing appropriate virtual features at a preset offset distance (in 3D space) from the tracked pattern. Issues that remain for doing this include determining the minimal size of the target and its resolution, determining the necessary viewing geometry (as the image is turned obliquely away from the frontal view, when does it stop being recognisable?), handling occlusions should these arise (if something passes between the camera and the target), and so on. Drawing on some preliminary tests for these factors, we developed a basic body mapping app using the Unity™ 3D game engine (Kim et al., 2014) and the Vuforia™ AR toolkit (Amin & Govilkar, 2015) (Figure 9.1) running on an Android smartphone. In addition, for the prototype, we used an existing example of a body map provided to us by Dr. Boydell (Figure 9.2), and, using geometric

FIGURE 9.1

The basic wearable body mapping app running on an Android™ smartphone

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FIGURE 9.2

Body map example shown in prototype body mapping app

primitives (helix shapes, cylinders, spheres, and cubes), produced examples of body maps in 3D versions. In order to capture effects such as forces, we animated the virtual elements. We were able to detect and track the target from a distance of about 1 metre to about 3 metres. However, if the person turned away from the frontal view, the target was eventually lost, although turns up to about 40 degrees were accommodated. The software we developed can also be scaled in size to fit the physique of the person. As can be seen from the figures, the app uses the target to create a 3D ‘torso image’ that, however, includes extensions for the upper legs and the head, which will match with the person’s body if the person stands up­ right. The sense of integration between the person and the additional virtual elements (that is, the body maps) is visually striking. Further, the example we developed for the prototype was based on a body map data set for people dealing with anxiety, and included both ‘before’ and ‘after’ images, that is, participants were asked to draw one body map presenting their actual state and a second where they portrayed how they would feel upon suc­ cessfully overcoming their anxiety issues.

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FIGURE 9.3 The digitisation environment: (a) some of the shapes available and (b) the shape placement submenu

As indicated earlier, a second important function if wearable body maps are to be used is a means to quickly and easily create the virtual elements that go into their makeup. For this purpose, we developed a second app within the Unity™ 3D game engine that provides the users with a toolkit to create, position, and animate the geometric primitives used by the first app (Figure 9.3). Note that the result lacks some of the features normally associated with body maps, even as it adds new features. In particular, the drawn body maps allow for more freedom in their creation. Here, the digitisation process is necessarily constrained as a result of our choice to use geometric primitives to simulate the body maps. It may also be that the digitisation process is less intuitive for people. Not everyone is at home manipulating 3D virtual objects. It may be necessary, therefore, to use a guided process where an expert comfortable with the software is directed by the user. The digitising software allows the user to create a set of shapes along with relative position, orientation in 3D space, colour, and spin, pulsation and end position if they are to be animated, as well as a time interval for the duration of the animation. Note that these immersive body maps are experienced more viscerally than the original 2D drawings. Seeing the shapes superimposed on one’s own body, for example, in a camera image viewed face on, can result in powerful sensations and effects. The animation of the shapes further intensifies these experiences. Note, however, that the effect must be mediated via a smartphone camera or webcam, or, alternatively, more directly via AR-equipped glasses.

Designing body mapping wearables To move beyond the basic body mapping app described previously, a range of possibilities are under development. For the app, we clipped in place the target image printed on paper, as shown in Figure 9.1. This is a cumbersome procedure, and so we have been investigating incorporating the target pattern into a garment directly.

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FIGURE 9.4

Body map under oblique viewing condition

Woven textiles that reproduce a target pattern have been successfully recognised using the Vuforia™ application program interface (API), despite some initial diffi­ culties (Figure 9.4). The images produced by weaving are ‘edge noisy’ and perturb the effectiveness of the recognition software. Note that the target pattern is com­ pletely independent of the virtual overlay. Therefore, incorporating the patterns directly into the garment does not in any way change the virtual features of the body map itself, only the means for ensuring integration of these with the direct sensory field. An alternative approach which shows preliminary success is to use a cylindrical image recognition paradigm – this option is supported by Vuforia™. Using a printed target that curves around the body, we can detect and track the pattern. Preliminary work suggests that we can produce garments that incorporate re­ cognisable targets for AR. Current efforts are being devoted to designing garments that can be used to support body maps in such a way that the garment itself is aesthetically pleasing, that is, so that the real and virtual components of the image complement each other. Another option we are exploring is to investigate the use of multiple targets; each assigned their own set of virtual features that may be integrated together. For example, by placing several targets around the body, the body map could be maintained even as the person turns. Alternatively, it may be possible to develop additional body map components that are anchored to the lower arms and hands, although, at this point, we have a lot of work to accomplish to achieve such an effect. Moving beyond the technical issues, one of the possibilities offered by this technology is to view the body maps of others draped onto their bodies, not just one’s own body maps. Indeed, these virtual body maps may be used in contexts beyond their original therapeutic contexts. The maps constitute a representation of a person’s inner state that can be viewed only by those persons equipped to read the target pattern, and hence could be used as a non-verbal means of commu­ nication about a person’s mental or emotional status to trusted persons. For ex­ ample, persons on the autism spectrum may use this means to communicate

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internal status without speaking. In the context of mental health, the ability to communicate such information non-verbally has been recognised as a useful de­ velopment (Donker et al., 2013). These expressive body visualisations also con­ stitute a kind of fashion statement, albeit one that can only be seen by people with the right viewing technology. Further, the use of AR in this way could raise awareness for the importance of monitoring mental health and perhaps reduce stigma (Angermeyer & Matschinger, 2003). Another possible development under investigation is the idea of allowing in­ teractivity with the person’s body map, that is, shifting the nature of body maps from a purely passive representation mode into something more active. However, this requires the integration of electronic sensors, that is, other wearable technol­ ogies. Hence, body maps may be programmed by the user to react in certain ways to impinging signals. These may be environmental in nature (for example, ambient temperature or light levels), a person’s own body states (for example, pulse, phy­ siological arousal, movement, etc.), someone else’s body states, or gestures, touch, and so forth. Indeed, the development of sensor-equipped garments has progressed tremendously in recent years. Increasingly, electronic components used in garments are designed so that they can pass through a wash cycle without being significantly damaged (Yokus et al., 2016). It is only the batteries which must be removed. However, sensor-equipped garments also, necessarily, require higher maintenance. Batteries must be manipulated, and repairs may be necessary. These modes of interaction are all local and direct. Another kind of interaction being studied is interactions at a distance and potentially involving more than one person. Essentially, we are constructing entangled garments that react to body maps or other personalised information regardless of where the other person is located (the interactions are mediated through smart phones and Internet services). The potential to create collective experiences of body maps through such means offers new kinds of experiences, for example, enhancing awareness of people one cares about through continuous delivery of non-verbal information in ways that can be viscerally compelling. As indicated earlier, these diverse developments are conceptualised within an ecological framework (Edwards, 2017). What this means is that the person as a whole (or a group of persons) along with the interacting components are col­ lectively viewed and understood as an ecosystem. Leaving aside characteristics associated with purely biological systems (for example, trophic interactions or food consumption, predation, etc.), smart ecosystems may be characterised by prop­ erties such as energy budgets, the ability to self-organise and self-repair, resiliency, niche dynamics, and resource limitations. At this level of development, the electronic components will not likely permit self-repair, but their operational status may be monitored and cues provided to the user concerning the need for replacements as necessary. The issue of resiliency is particularly relevant in this context because it is closely tied to mental health. For example, the ability to express and monitor body maps, both for the self and in relation to other

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individuals, may contribute to resiliency, provided maintenance is kept within reasonable bounds. In the context under development, privacy issues are handled by restricting access to the data to trusted individuals, that is, those who have the same apps and access codes. Ethical issues around data sharing and smart garment usage remain an ongoing pre-occupation for this work (see, for example, Wassom, 2014, for a comprehensive treatment of ethical issues around the use of AR).

Beyond design The issue of the creative use of these extensions of body mapping capabilities has already been partially addressed in the preceding section. The direct use of AR targets results in a technology that is almost as low in overhead as the original drawing method. Besides the target that is attached to the garment, a separate app is required, built into a person’s smartphone, for example, but smartphones are ubiquitous in many parts of the world, and so cost remains low. The use of electronics combined with the AR techniques results in a merging of body mapping capability with other wearable capabilities – various forms of monitoring, expression, and communications. This, however, leads to increased costs, man­ agement complexity, and development time. The ecological framing acts to shift our focus from thinking about these de­ velopments from purely technical considerations to the ways in which they may contribute to mental health in a manner that parallels the existing use of smart garments to monitor exercise and physical health. The ecological framework, in particular, leads us to ask questions concerning the whole person impact of these systems, including both positive and potentially negative impacts. Hence, the ecological perspectives elicit questions about the kinds of habits that may develop as a result of the new technologies. One needs only to look at existing ‘technologies of disruption’, such as smartphones and tablets, to see how these technologies may reconfigure mental health in daily life (Naslund et al., 2015) in positive ways. These technologies of disuption also result in the emergence of numerous pernicious effects (for example, sleep disruption (Adams & Kisler, 2013), anxiety and de­ pression (Elhai et al., 2017), changes in face-to-face social interactions (Park & Lee, 2012), etc.). Understanding or even predicting such effects requires examining the potential for reinforcement and disruption of existing habits or for the creation of new habits (an approach that follows some of Bateson’s work on habits and ecology – cf. Bateson, 2000; Clark, 2000). Note that these technologies also provide enhanced means for monitoring behaviour (Glenn & Monteith, 2014; Raento et al., 2009).

Conclusion In summary, wearable body mapping is presented as a performative act that is different from the original act of drawing. Indeed, it may represent a form of

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fashion statement as well as serving both therapeutic and communication needs. Focusing on AR techniques, wearable body maps are relatively inexpensive to develop. Indeed, a basic smartphone app is shown, for which the only requirement is the wearing of an appropriate target pattern. Methods for incorporating target patterns into garments are discussed. There are four ways in which wearables can be used to support body mapping, the static, passive, active, and collective perspectives. Static wearables only offer pre-digitised visual supports for viewing technologies such as AR. The app de­ veloped demonstrates this capability. Passive wearable body maps include sensors that capture and record data but do not actively interact with the environment. In these wearables, pre-digitised body maps may adapt or change in response to changes in a person’s body states. Active wearables offer bidirectional interaction with either the body or the environment or both, whereby people may affect the displayed body maps through direct interactions. Finally, collective wearables enable technologically mediated interactions between bodies (that is, people), even at a distance. These more interactive wearable body maps are under development, but the work is challenging.

Acknowledgements Many thanks to Juan Nino Falcon who did the programming to develop the basic wearable body mapping app (and is shown demonstrating the app in Figure 6.1), and to Dominique Michaud who has been working on the textile adaptations to support the wearable body mapping applications.

References Adams, S.K. and Kisler, T.S. (2013). Sleep quality as a mediator between technologyrelated sleep quality, depression, and anxiety. Cyberpsychology, Behavior, and Social Networking, 16(1), 25–30. Amin, D. and Govilkar, S. (2015). Comparative study of augmented reality SDKs. International Journal on Computational Science & Applications, 5(1), 11–26. Angermeyer, M.C. and Matschinger, H. (2003). The stigma of mental illness: Effects of labelling on public attitudes towards people with mental disorder. Acta Psychiatrica Scandinavica, 108(4), 304–309. Bateson, G. (2000). Steps to an ecology of mind: Collected essays in anthropology, psychiatry, evolution, and epistemology. University of Chicago Press, Chicago, IL. Butler, J. (2006). Performative acts and gender constitution: An essay in phenomenology and feminist theory. In The Routledge Falmer reader in gender & education (pp. 73–83). Routledge, London, UK. Clark, F.A. (2000). The concepts of habit and routine: A preliminary theoretical synthesis. The Occupational Therapy Journal of Research, 20(Suppl 1), 123S–137S. de Jager, A.D., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 17(2). doi:http://dx.doi.org/ 10.17169/fqs-17.2.2526.

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Donker, T., Petrie, K., Proudfoot, J., Clarke, J., Birch, M.R. and Christensen, H. (2013). Smartphones for smarter delivery of mental health programs: A systematic review. Journal of Medical Internet Research, 15(11), e247. Edwards, G. (2017). Ecological perspectives for last mile mobility: The case for augmented corporality. In Embedded systems and assistive technology for last mile mobility (pp. 1–8). France: Institute for Computer Science. Ehlers, N. (2006). ‘Black is’ and ‘Black Ain’t’: Performative revisions of racial ‘crisis’. Culture, Theory and Critique, 47(2), 149–163. Elhai, J.D., Dvorak, R.D., Levine, J.C. and Hall, B.J. (2017). Problematic smartphone use: A conceptual overview and systematic review of relations with anxiety and depression psychopathology. Journal of Affective Disorders, 207, 251–259. Gemeinboeck, P. and Saunders, R. (2014). Towards a performative body mapping ap­ proach. In 50th annual convention of the society for the study of artificial intelligence and the simulation of behaviour (AISB 2014), London. Glenn, T. and Monteith, S. (2014). New measures of mental state and behavior based on data collected from sensors, smartphones, and the Internet. Current Psychiatry Reports, 16(12), 523. Huang, P. (2000). Promoting wearable computing: A survey and future agenda. TIKReport, 95. Hurford, R.D. (2009). Types of smart clothes and wearable technology. In J. McCann and D. Bryant (Eds.), Smart Clothes and Wearable Technology. Oxford: Woodhead, 459 pp. Kim, G.J., Han, S.H., Yang, H. and Cho, C. (2004). Body-based interfaces. Applied Ergonomics, 35(3), 263–274. Kim, S.L., Suk, H.J., Kang, J.H., Jung, J.M., Laine, T.H. and Westlin, J. (2014). Using unity 3D to facilitate mobile augmented reality game development. In 2014 IEEE world forum on Internet of Things (WF-IoT) (pp. 21–26). IEEE, Seoul, South Korea. Kirstein, T. (2013). The future of smart-textiles development: New enabling technologies, commercialization and market trends. In Multidisciplinary know-how for smart-textiles de­ velopers (pp. 1–25). Cambridge, UK: Woodhead Publishing. Lester, J.N. and Paulus, T.M. (2012). Performative acts of autism. Discourse & Society, 23(3), 259–273. Magliocco, S. (2014). Introduction: Ritual creativity, emotions and the body. Journal of Ritual Studies, 28(2), 1–8. Naslund, J.A., Marsch, L.A., McHugo, G.J. and Bartels, S.J. (2015). Emerging mHealth and eHealth interventions for serious mental illness: A review of the literature. Journal of Mental Health, 24(5), 321–332. Park, N. and Lee, H. (2012). Social implications of smartphone use: Korean college stu­ dents’ smartphone use and psychological well-being. Cyberpsychology, Behavior, and Social Networking, 15(9), 491–497. Raento, M., Oulasvirta, A. and Eagle, N. (2009). Smartphones: An emerging tool for social scientists. Sociological Methods & Research, 37(3), 426–454. Schmalstieg, D. and Hollerer, T. (2016). Augmented reality: Principles and practice. Boston, MA: Addison-Wesley Professional. Warren, J.T. (2001). Doing whiteness: On the performative dimensions of race in the classroom. Communication Education, 50(2), 91–108. Wassom, B. (2014). Augmented reality law, privacy, and ethics: Law, society, and emerging AR technologies. Amsterdam, the Netherlands: Syngress.

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Yokus, M.A., Foote, R. and Jur, J.S. (2016). Printed stretchable interconnects for smart garments: Design, fabrication, and characterization. IEEE Sensors Journal, 16(22), 7967–7976. Zeagler, C. (2017). Where to wear it: Functional, technical, and social considerations in on-body location for wearable technology 20 years of designing for wearability. In Proceedings of the 2017 ACM international symposium on wearable computers (pp. 150–157). ACM, Mauii, Hawaii.

10 AUDIENCE RESPONSE TO THE DISSEMINATION OF BODY MAPPING RESEARCH VIA INSTALLATION ART Katherine M. Boydell, Adèle de Jager, Anna Tewson, and Priya Vaughan

Background Recognition that visual and arts-based research methods provide an effective means of representing or expressing unique personal experiences (Ball & Gilligan, 2010) has resulted in increased application, by researchers and com­ munity development practitioners, of arts-based methods in health research (Boydell et al., 2012). Body mapping is an arts-based research strategy which, due to its focus on embodied experience, affords the exploration of sensory and psychological experience (De Jager et al., 2016; Orchard, 2017). Body mapping is beneficial for knowledge translation purposes due to its tractability in pre­ sentation possibilities, for example, an exhibition, photo book, or shared via academic publications. The use of body mapping in research allows for an exploration of ones embodied experience that is creative, something which is not possible while conducting surveys or interviews (Dew et al., 2018). It is participant focused, allowing for a diffusion of potentially uneven hierarchical power dynamics between researcher and participant. Further, body mapping has been utilised in health research world-wide to dynamically and powerfully illustrate political context, physical conditions, and individual lived experience (Gastaldo et al., 2018). In this chapter, we outline the dissemination of Keeping the Body in Mind (KBIM), a body mapping project that involved six young people impacted by psychosis, who engaged in body mapping their experiences of an intervention that focused on their physical health. This intensive 12-week, strength-based multi­ disciplinary lifestyle intervention was delivered at initiation of anti-psychotic treatment for young people experiencing first episode psychosis. The KBIM lifestyle intervention program was found to be highly acceptable and perceived

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program benefits moved beyond improved physical health outcomes to a broad range of psychosocial benefits (Curtis et al., 2016). At two years post-intervention, data indicated that improved physical outcomes were maintained (Curtis et al., 2016); consequently, our team felt that it was critical to explore the perspectives of young people post-intervention regarding the longterm impact of the program on their holistic health, including but not limited to issues of physical health, mental health, and psychosocial function. We used in-depth qualitative interviewing and a process of engaging participants in body mapping to document a visual story of how involvement in KBIM impacts their bodies, mental and physical health, relationships, and community (described in de Jager et al., 2016). Body maps allow for a visual representation of how individuals think about their own lives and identity, and give voice and visibility to participants themselves via engagement in a critical examination of the meaning of their unique experiences. The body maps displayed in the dissemination exhibit described in this chapter were created over four sessions and were followed by in-depth qualitative inter­ views to create participant testimonia. The body maps conveyed themes of hope and recovery, relationships, community, growth, permeability, possibility, and positive change. The narrative trope was one of recovery, highlighting the importance of the link between body and mind, the individual and the com­ munity, and the balance between light and dark. Involvement in the body mapping process was consistently identified as therapeutic, offering an opportunity for reflection on the journey to recovery with a focus on past, present, and future (Boydell et al., 2018). The dissemination project was driven by the research team’s belief that the findings of the body mapping project should be translated effectively to clinicians, researchers, and policy and decision-makers. We also thought that the importance of physical health in mental health would be of interest to a wider audience, including consumers of health services, their families, and the general public. Given the visually interesting and aesthetically engaging nature of the body maps created by KBIM participants, we saw installation art as an appropriate means to share research findings, complementing the formal publications and enabling new interpretations of the data (Figure 10.1).

Commissioning artist response to the body maps The research team collaborated with curators Melissa Laird and Sophie Dieu of the National Institute of Dramatic Art (NIDA) to stage the exhibition. Given the installation was intended to facilitate audience engagement with body maps, and provide an interesting, and multi-sensorial, viewing experience, the research and curatorial team decided to expand the exhibition to include the works of art created by artists not directly involved in the KBIM research project. The research team collaborated with Laird and Dieu and together crafted an Expression of Interest that was circulated to all NIDA staff, students, and alumni. They were invited to respond, using their own art genre, to a one-page main

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FIGURE 10.1

Keeping the Body in Mind body mapping exhibition

message summary of the Keeping the Body in Mind body mapping research study that was accompanied by the body map images. In all, 26 responses were received, and all were accepted. They included digital photographs, film and soundscapes, poems, mixed media installation, and sculpture. Artist responses included an artwork title, medium, dimensions, and an artist’s statement, illus­ trating the ways in which they had responded to, interpreted and/or were in­ spired by the body mapping research study. It was hoped that the addition of these works to the exhibition would enhance and complement the affective power of the body map, drawing them into a visual dialogue with artworks canvassing thematic terrain inspired by the KBIM project. We share an example of an artist response to the body maps. The work was titled Snakes and Ladders, an installation by Kylie Black (Figure 10.2). The 5 m × 5 m structure was composed of ply, gloss enamel paint, rubber backing mat, inflatable plastic dice, and human players. In Kylie’s artist statement, she notes ‘what strikes me as I read the narratives and consider the body maps is that through the mapping of a body and mind the participants have courageously undertaken a lot of healing self-reflection’. She ac­ knowledges that participants have undertaken a process that involved taking ownership of the factors and triggers to episodes of psychosis and depression, and have identified the actions that bring about positive changes and opportunities for personal recovery. Kylie notes that ‘snakes and ladders [is] … a game of chance with opportunities for making leaps in progress, but also moments where we can slip and slide backwards. By

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FIGURE 10.2

Snakes and Ladders installation

bringing choice to the game, we embody the journeys of these young people, where they are empowered to understand and what causes them to slide and what choices they have to progress upward. Unlike the actual game, where snakes and ladders never intersect, in this game in some spots they do – showing how choice can impact where we go. The snakes are marked with negative triggers from all of the body maps and the ladders read as the triggers for improvement in wellbeing’. The KBIM body mapping installation event was held on the evening of September 14, 2016. The audience consisted of approximately 150 individuals who were invited from the across the university, NIDA, the local health district, health policy venues, and included art-practitioners and consumers of mental health services and their families. The event began with a welcome and in­ troduction from the co-curators and a brief overview of the study by PI Boydell. This was followed by artist Ross Bruzzese’s personal response to the recovery narratives in the body maps and a guided meditation to bring audience con­ sciousness to the body. The audience were then encouraged to wander through the NIDA space, to engage with the body maps which were hanging on large silk screens in the ‘red room’ (Figure 10.1) and to view the artist responses to the body maps in other rooms and corridors on the two-floor exhibit.

Audience response to the installation Qualitative text was gathered from viewers of the installation and included 40 comments posted on a large poster board at the exhibition and 27 qualitative

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surveys completed by audience members post event. All study data were ana­ lysed for thematic content following Braun and Clarke’s guidelines (Braun & Clarke, 2006; Clarke & Braun, 2013). This involved familiarisation with the data and searching for a coherent and meaningful pattern in the data. Computer software (NVivo 12) was used for managing and organising visual and textual data for the purpose of analysis. Analysis of qualitative feedback revealed that the KBIM body mapping in­ stallation evoked a particular set of audience responses and communicated – with varying degrees of effectiveness – particular ideas about mental and physical health. Four key themes were identified from the audience feedback data: the power of visual arts research and dissemination strategies to expand audience reach; the em­ bodied connection linking the mind and body; the effectiveness of visual arts in encouraging empathy and understanding; and the difficulties associated with inter­ preting particular forms of visual representation. Finally, audience feedback also indicated that the exhibition – and the works contained therein – demonstrated the potential for enhancing the mental health literacy of audience members.

Expanding audience reach Installation viewers identified the power of dissemination via the arts compared with conventional academic outputs such as the peer-reviewed article or a sci­ entific presentation. As one audience member observed, ‘OMG so much better than dry research findings behind the pay-wall. Very inspirational to me as a researcher’. The importance of informing those outside of academic settings was highlighted with audience members responding positively to the exhibition format: ‘the medium helped to reach a wider audience … the cool atmosphere of the exhibition was a good way of presenting mental health research in a different way thus reaching a wider audience’. Audience feedback also identified the power of the body maps themselves: ‘the artwork made the subjective experi­ ence of psychosis much more accessible to me. The body maps provided a clear visual link between the mind and the body’. Finally, audience members observed that the use of visual methods to communicate personal experiences, and re­ search findings, resulted in greater accessibility: ‘visual media is a fantastic way of expressing complex emotions and narratives of the clients. The colours, size, and placement of the significant aspects of their experience makes it easier for the public to interpret’.

Linking mind and body: Embodied connection Audience members reported that the body maps, and the art works responding to the body maps, evocatively and expressively represented the intrinsic connection between mind and body, and between mental and physical health: ‘Sometimes we are so caught up in our minds we forget how our bodies feel. This is fantastic!’. Further, several comments indicated that because these ideas were represented

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visually, they had a profound affective power which is not typically present in text-based research dissemination. As one audience member noted, ‘expressive in ways that are more articulate than words itself ’.

Gaining empathy and understanding Numerous audience members reported that the exhibition encouraged them to have a greater empathy for, and understanding of, the experiences of young people with psychosis. The following response is typical, ‘because of the experience, I felt I could empathise more with people experiencing psychosis. A lot of their ex­ perience did not feel so different than mine in many ways … I really connected with the storytelling’. Further, audience members reported that the representation of these experiences in a visual form was key to their increased empathy and understanding: ‘I felt that I could relate more to the individuals through viewing their artwork, for example, one artist’s image described a sensation of blackness that immediately surrounded her, and I thought this was a powerful image to describe her subjective experience’. In view of the empathy and understanding evoked by their viewing experience, a number of audience members noted that arts-based research and dissemination strategies have the power to dispel negative feelings and impressions regarding mental health issues: ‘it raised awareness and lowered sigma regarding psychosis’; ‘the implications for de-stigmatising mental health are huge’.

Interrogating representation In general, audience members felt able to engage with and understand the body maps. This was due, in part, to the display of textual interpretative material, created by the body-map makers, which was exhibited alongside the maps. However, artistic responses to the maps proved more difficult to connect with or understand with various respondents explaining they were not sure of the re­ lationship between the body maps and other artworks in the exhibition. As one audience member noted, ‘I thought the body maps and testimonia were en­ lightening, the artworks created in response were more difficult to interpret and connect to’. This raises questions about the ability of visual arts to communicate ideas and experiences independent of some kind of didactic textual material which can serve to orient a viewer. It also suggests that not all audience members have the confidence or skills required to interpret and engage with visual works in meaningful ways (see Discussion section).

Potential to enhance mental health literacy Finally, audience responses provided some indication that the KBIM installation had the effect of enhancing the mental health literacy of audience members. Data relating to this issue were relatively scant; however, some respondents did mention

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that in engaging with the exhibition, they learnt about particular mental health issues. For example, one audience member noted, ‘the KBIM exhibition brought to the forefront the relationship between physical and mental wellbeing and how inextricably linked the “whole” of the body really is’. Further research is required to affirm the connection between the format of the visual arts exhibition and enhanced mental health literacy.

Discussion Findings demonstrate the importance of considering the arts as a research dis­ semination strategy, both to broaden the types of audiences that can be reached and to enhance accessibility. We have made the case elsewhere that body mapping is uniquely well-suited to subject matter where embodiment is of central concern (de Jager et al., 2016). Both our participant feedback regarding creating body maps, and audience feedback regarding the exhibition of these maps, confirm the effectiveness of body mapping in this regard. The use of body maps not only assisted participants in focusing on the relationship between their physical and mental health, but also communicated this relationship to audience members. Several audience members also specifically noted the effectiveness of using a visual means of disseminating research findings. The physical space in which the body maps were displayed, their scale (each map was reproduced to be at least life sized), and the way in which audience members viewed the maps (at close range, in ways that enabled detailed en­ gagement), all invited personal reflection upon the embodied self. By its nature, audience understanding of the body mapper’s embodied experience (as depicted through their body maps) involves drawing an analogy with one’s own body: we understand what we understand about others’ embodied experiences based on our own bodies (Merleau-Ponty, 2012). Audience members’ bodies were also involved in perceiving the research re­ sults: they walked around the room, had a choice about where to stand in relation to the body maps, and were surrounded by other people, similarly viewing the body maps or talking to one another. In addition, one of the responding artists created a space where audience members could participate in body mapping themselves and many took up the opportunity to do so. In other words, the embodied nature of human experience and perception were affirmed both by the works on display, and by the method via which audiences gained access to them. The exhibition was fundamentally multisensory, involving seeing, hearing, feeling, moving, and doing. These factors are not present in traditional research dis­ semination, which commonly involves an individual reading a research article in isolation from others. As Lapum et al. (2014) have noted, the transformative power of art genres has the power to engage individuals with the ‘emotional and embodied experience of an other, allowing them to access an internal experience’ (p. 12). The dissemination event described in this chapter also showed that attendees reflected on their own internal bodily experiences.

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It has been noted that some individuals perceive the arts as so open to inter­ pretation that concrete meaning is lost, or the art form renders it challenging to derive something that could be applied in health care practice (Lapum et al., 2014). We have argued elsewhere (Boydell et al., 2017) that it is important to know the audience, and that the amount of framing required depends on the intent of the message to be communicated as well as the topic and form. Boydell et al. (2017) have identified a number of strategies to assist in balancing robust artistic elements and solid research findings while dealing with the dissemination of their art-based work. These include ensuring that visual, performative, or literary presentation of the work is grounded in the research; relying on the use of metaphor; audience preparation pre-dissemination; post-dissemination audience engagement; and broadening the currently narrow conceptualisation of evidence that ignores the various other types of knowledge that are interactive, iterative, and contextual. Consideration of these strategies alongside a broader conceptualisation of knowledge and ways of knowing (Davies et al., 2008; Gabbay & le May, 2004) can help to mitigate feelings of discomfort regarding the representation of source material in art-based research projects. It is apparent from audience feedback that the link between the body maps and artist responses to the body maps was not always clear. It is possible that a more indepth engagement with the body maps by artists before commencing their projects may have increased the relevance of their artistic responses and ensured that their responses were grounded in research. Alternatively, textual or didactic material – such as additional wall texts or an information sheet – could have been utilised to more directly explain, or contextualise, the relationship between the body maps and artworks. In order for arts-based research dissemination to reach its full po­ tential, there is a clear imperative for the artwork generated to be strongly grounded in research findings. This is a requirement if lived experiences of par­ ticipants, which they have chosen to share publicly, is to be honoured. In ret­ rospect, a structured face-to-face workshop with artists may have been of assistance in this regard. The benefits of this approach most likely outweigh its additional demands in terms of time and resources. In spite of this desire to align the art with the research findings, we also ac­ knowledge that, in an exhibition like KBIM, there can be space for strongly experiential, not-strictly-data-driven art works that create an atmosphere for the audience and help them engage broadly with, and feel, the themes of research in non-didactic ways. In a way, the works made by artists mirrored the experience of audience members seeing the exhibition for the first time. Artists were responding to body maps, and making connections between participant experience, and their own experiences. Further, audience members were also doing this as they walked through the exhibit. So, the body maps represented the participants’ experiences, and the artworks anticipated and echoed audience experience. Despite this acknowledgement, ultimately, we concur with Gray and Kontos (2015) that when art works and research have been combined, the work is pri­ marily underpinned by an aesthetic of objectivity, which assumes a linear path

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between research findings and the work itself (whether performative, visual, or literary), and curtails the significance of aesthetic interpretation to privilege ‘au­ thentic’ representations of research findings.

Directions for further research We acknowledge that given the makeup of our invited audience, it is likely they already had a certain level of understanding/empathy for marginalised and vul­ nerable populations, specifically regarding people with mental health issues. Thus, a logical next step would be an analysis of the effects of exhibition-based dis­ semination on audience members from the general public. Boydell et al. have begun to explore this in their work with the general public regarding their ex­ periences of anxiety (Larsen et al., 2018). Avenues for other modes of body-map dissemination, beyond art installation, should also be investigated. For example, would body maps be efficacious research dissemination tools if they were displayed on a website for a potentially vast au­ dience? Or is their communicative power dependent on physical engagement in an exhibition space? Further research is required to establish the efficacy of digital and other forms of body map display and dissemination.

References Ball, S. and Gilligan, C. (2010). Visualizing migration and social division: Insights from social sciences and the visual arts. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 11(2), doi:http://dx.doi.org/10/17169/fqs-11.2.1486. Boydell, K.M., de Jager, A., Ball, J., Curtis, J., Lappin, J., Kalucy, M., Rosenbaum, S., Tewson, A., Vaughan, P., Ward, P. and Watkins, A. (2018). Mapping a novel landscape for understanding physical and mental health: Arts-based research with youth experi­ encing psychosis. Art/Research International, 3(2), 236–261. Boydell, K.M., Hodgins, M.J., Gladstone, B.M. and Stasiulis, E. (2017). Ineffable knowledge: Tensions (and solutions) in art-based research representation and dis­ semination. Journal of Applied Arts & Health, 8(3), 193–207. Boydell, K.M., Gladstone, B.M., Volpe, T., Allemang, B., Stasiulis, E., Gladstone, B.M., Volpe, T., Allemang, B. and Stasiulis, E. (2012). The production and dissemination of knowledge: A scoping review of arts-based health research. Forum: Qualitative Social Research, 3(1), doi:http://dx.doi.org/10/17169/fqs-13.1.1711. Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. Clarke, V. and Braun, V. (2013) Successful qualitative research: A practical guide for beginners. London: Sage. http://eprints.uwe.ac.uk/21156. Cox, S., Kazubowski-Hosuton, M. and Nisker, J. (2009). Genetics on stage: Public en­ gagement in health policy development on preimplantation genetic diagnosis. Social Science and Medicine, 68, 1472–1480. Curtis, J., Watkins, A., Rosenbaum, S., Teasdale, S., Kalucy, M., Samaras, K. and Ward, P.B. (2016). Evaluating an individualized lifestyle and life skills intervention to prevent

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antipsychotic-induced weight gain in first-episode psychosis. Early Intervention in Psychiatry, 10(3), 267–276. Davies, H., Nutley, S. and Walter, I. (2008). Why knowledge transfer is misconceived for applied social research. Journal of Health Services Research and Policy, 13(3), 188–190. de Jager, A., Tewson, A., Ludlow, B. and Boydell, K.M. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Qualitative Social Research, 17(2), doi:http://dx.doi.org/10/17169/fqs-17.2.2526. Dew, A., Smith, L., Collings, S. and Dillon Savage, I. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum: Qualitative Social Research, 19(2), Art. 4. http://dx.doi.org/10.17169/fqs-19.2.2920. Gabbay, J. and le May, A. (2004). Evidence based guidelines or collectively constructed “mindlines?” Ethnographic study of knowledge management in primary care. British Medical Journal, 329, unpaginated. http://www.bmj.com/content/bmj/329/7473/1013.full.pdf. Gastaldo, D., Rivas-Quarneti, N. and Magalhaes, L. (2018). Body-map storytelling as a health research methodology: Blurred lines creating clear pictures. Forum: Qualitative Social Research, 19(2), Art. 3. Gray, J. and Kontos, P. (2015). Immersion, embodiment, and imagination: Moving beyond an aesthetic of objectivity in research-informed performance in health. Forum: Qualitative Social Research, 16(2), Art. 29. Lapum, J., Liu, L., Church, K., Yau, T.M., Ruttonsha, P., Matthews David, A. and Retta, B. (2014). Arts-informed research dissemination in the health sciences: An evaluation of people’s responses to “The 7,024th patient” art installation. SAGE Open, 1–14. Larsen, M., Vaughan, P., Bennett, J. and Boydell, K.M. (2018). The BIG Anxiety project: Visually exploring public experiences and attitudes to anxiety. Journal of Applied Arts & Health, 9(1), 85–97. Ludlow, B. (2014). Witnessing: Creating visual research memos about patient experiences of body mapping in a dialysis unit. American Journal of Kidney Diseases, 64(5), A13–A14. Merleau-Ponty, M. (2012). Phenomenology of perception. London; New York: Routledge. D.A. Landes (ed.). Orchard, T. (2017). Remembering the body. Ethical issues in body mapping research. Cham: Springer. Schneider, J., Lowe, S., Myers, T., Scales, K., Bailey, S. and Middleton, J. (2014). A short report on knowledge exchange through research-based theatre: ‘Inside out of mind’. Social Science and Medicine, 118, 61–65. Solomon, J. (2007). “Living with X”: A body mapping journey in time of HIV and AIDS. Facilitator’s Guide. Johannesburg: REPSSI.

11 REAL-WORLD INTEGRATION Body maps as a planning tool Angela Dew, Susan Collings, and Isabella Dillon Savage

Background As described throughout this book, body mapping as a research method facilitates an embodied exploration of a specific topic. The embodied nature of body mapping encourages participants to think in abstract ways to create a visual re­ presentation of their experience. As such, body mapping may be viewed as an esoteric and artistic activity with little relationship to practical research outcomes and outputs. In this chapter, we describe, in more detail, Study 5 that was un­ dertaken with the purpose of creating a practical guide for use by and with people with intellectual/cognitive disability and complex support needs. The resulting guide, ‘Living the life I want’: A guide for planning, is a high-quality visual planning aid the content, layout, and format of which were informed through the use of body mapping. The guide can be downloaded from https://www.arts.unsw.edu. au/research/intellectual-disability-behaviour-support-program/resources/. We have previously described in this book (in Chapters 1, 5, and 6) our rationale and practical and analytical approaches for using body mapping in Study 5. In this chapter, we focus on the innovative way we combined integrated knowledge translation (KT), praxis, and action research to engage end users throughout the development of the planning guide (Collings et al., 2018; Freire, 1970; Kothari & Wathen, 2013; Reason & Bradbury, 2008). The combination of these theoretical and methodological approaches ensures that the final product is ‘fit for purpose’ and relevant to diverse individuals, groups, and contexts. We had previously de­ veloped this blended participatory approach to create a widely used and highly acclaimed practitioner resource for planning with people with intellectual/cognitive disability and complex support needs (Collings et al., 2018), and we modified this approach for Study 5, and further adapted the approach to engage Aboriginal and Torres Strait Islander communities in Study 6.

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Integrated KT, praxis, and action research approach As described in Collings et al. (2018, p. 3): The methodological approach … is underpinned by three interlinked conceptual foundations, which inform a framework for research to practice in social care planning. The first component, knowledge translation, provides the impetus and rationale for the need to increase the integrity, uptake and applicability of research for end users. The second component identifies principles of praxis as a critically reflective application of theory to practice, and the third identifies action research as a key participatory method … The aim of KT is to bridge the knowledge to practice gap through a dynamic and iterative process that involves end users throughout resulting in a greater like­ lihood that research will be applied in practice (Dew & Boydell, 2017). Added to this, the concept of praxis (Freire, 1970) emphasises the need for critical reflection which is an important aspect of creating body maps. Finally, the action research element promotes collaboration through a co-researcher approach aimed at creating empirically informed practical solutions by valuing different ways of doing research (Reason & Bradbury, 2008). Figure 11.1 provides a visual representation of the interactions between the various aspects of the combined approach we used in Study 5.

Involvement of end users Co-researchers

Knowledge translation

Dynamic and interactive

Research applied to practice

Action research

Praxis

Critical reflection

FIGURE 11.1

Praxis action research approach

Produce practical solutions

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Using body mapping to apply this approach Study 5 was commissioned research with a brief to produce a planning guide. Our challenge was to develop a resource that was informed by evidence and could be used by and with people with intellectual/cognitive disability and complex sup­ port needs. As mentioned previously, we had already used a combined KT, praxis, and action research approach with practitioners to produce another resource (Collings et al., 2018). In Study 5, we needed to employ inclusive research methods with people with disability – increasingly regarded as the ‘gold standard’ for research with this po­ pulation. There are various definitions of ‘inclusive’ research, but a commonality is that people with disability are involved in multiple aspects of the research process rather than solely as research participants. In a recent review of publications on inclusive research, Strnadova and Walmsley (2018, p. 133) state that ‘Inclusive research is a term used to describe research undertaken with people with in­ tellectual disabilities, in ways which include them as actors, rather than subjects of research’. Previously, Walmsley and Johnson (2003) described inclusive research as giving voice to participants with intellectual disability. In Study 5, we sought to hear (and see via body maps) the perspectives of people with intellectual/cognitive disability by involving them as research participants and co-researchers in our combined KT, praxis, and action research approach to develop the planning guide. A detailed description of our use of body mapping with 30 adults with in­ tellectual/cognitive disability and complex support needs (Study 5) is given in Dew et al. (2018) and is reported in previous chapters of this book. In summary, each participant completed two body maps over two consecutive half-day workshops. Workshops were held in six sites and included between three and six participants. Participants were asked to map their experiences of planning and hopes for future plans. Planning is a key process of the Australian National Disability Insurance Scheme (NDIS) in order for people to identify the supports required to meet their disability-related needs. Eligible scheme participants then receive funding based on the elements of their plan. In commissioning us to produce the planning guide, the New South Wales Government recognised that people with intellectual/cognitive disability who have complex support needs face particular challenges in relation to planning. Complex support needs are re­ lated to the depth and breadth of support required across multiple life domains including psychosocial, behavioural, and social (Rankin & Regan, 2004). In our study, a researcher and/or support person worked with each individual within the workshop setting. The workshop setting allowed us to make the ab­ stract concept of representing one’s views and experiences onto a body map more concrete through demonstration and modelling. This was a critical accessibility element with participants for whom intellectual/cognitive disability may make the processing of abstract concepts difficult. The workshop setting also provided participants with opportunities to de-brief after each session with others who they knew and with whom they felt comfortable (fellow participants, family members,

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and support workers). Due to the level of abstraction involved in body mapping, participants with more severe intellectual/cognitive disability experienced more difficulty in completing their maps, requiring adaptations of the method. These adaptations included completing the testimonia in situ during the body mapping session rather than at a later stage, shortening the length of time sessions ran for to take account of some participants’ shorter attention spans, and tailoring partici­ pants’ involvement in response to their needs. For example, one participant who was visually impaired described what she wanted drawn on the map and where she wanted it situated, to a support worker who did the drawing. Despite not phy­ sically drawing on the map herself, this participant nonetheless maintained own­ ership of the symbolism transcribed onto the map. Following the body mapping workshops, the research team analysed the body maps and testimonia transcripts as described in Chapter 6. Thematic analysis in­ formed the evidence base that underpinned the planning guide but an additional analytic process was needed to create the guide itself. The core research team (AD, SC, and IDS) spent two days together at a research retreat to brainstorm and storyboard a first, rough outline of the guide’s structure and content. We constantly questioned our assumptions and pushed ourselves to reflect (praxis) on the evi­ dence gathered via the body mapping workshops to inform both the content and the format. We reflected on feedback from research participants that body map­ ping had been inspirational and was itself a useful planning aid and realised that the guide should include body outlines to structure the approach to planning. This embedded the body mapping method within the planning guide itself.

Testing and refining the planning guide: Action research in action Following the retreat, graphic designers with whom we had previously worked were engaged to take our rough sketches and outline structure and craft a highly visual and easy to follow mock-up of the guide. Over several action research cycles, this exemplar was refined to produce the final product. Figure 11.2 pro­ vides an overview of the action research process used in Study 5. Working with graphic designers was essential to the action research process as their creative and technical skills transformed our academic approach into clear, visually attractive and accessible graphics. A quote from graphic designer, Sandra, illustrates her view on our working relationship: I never did fully understand the intricacies of the [guide] topics but in the end I didn’t need to. There were other people giving input who did. We all had our areas of expertise and respected the judgement of each other as appropriate. A pretty good way to work actually! Armed with the first working version of the guide, Dew and Dillon Savage worked with four participants, four support workers, and two family members

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Body mapping workshops (N = 30)

• Sense of self • Contextual barriers • Helpful and unhelpful support

Action research test group • Co-design guide with researchers People with disability (n = 4) and graphic Support workers (n = 4) designer Family members (n = 2) (N = 10)

Create planning guide

FIGURE 11.2

• Dissemination strategies

Research process used to create ‘Living the life I want’: A guide to planning

who agreed to be part of an action research team that provided input to develop the final version of the guide. Figure 11.3 provides an overview of the action research cycle showing the progression from creation of draft to final version. The first action research session was conducted in person and involved a de­ tailed step-by-step process of working through the draft guide using a series of questions to aid team members’ reflection and feedback. One action research team member who had a disability, JT (a pseudonym), noted: My body work was inspiring for a lot of people out there. JT also expressed his surprise and excitement at being engaged in the action research process, saying that: That [being asked for feedback on the guide] actually took me by surprise. I wasn’t expecting that but that was a dream … I’m hoping that in the future it will encourage other generations [of people with disability] to come and be involved in this body mapping. The questions asked of action research team members related to content, flow, layout, language, and overall clarity and usefulness of the guide. Action research team members with disability and their support workers provided detailed feed­ back on language and flow so that we could refine content to maximise its suit­ ability for people with limited literacy. One of the family members involved also suggested a weekly planning schedule to be included.

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Action research group feedback

Graphic design version of draft guide

Action research group confirmation

Reflect & revise

Graphic design revisions FIGURE 11.3

Action research cycle

This first round of consultations resulted in major changes to the draft guide. In particular, Section 3 of the guide called ‘Making it Happen’ was completely redrafted following feedback from a support worker, Jenny, who noted this section as potentially differentiating the guide from other planning tools. Jenny suggested using a framework known as ‘head, hands, heart’ for this section of the guide. She had used this framework in training self-advocates with in­ tellectual disability and noted that it had assisted people to consider the thinking (head), practical (hand) and emotional (heart) elements of a topic. We agreed with Jenny that using this framing, which fitted so well with the embodied aspects of body mapping, was a useful addition to the guide as it assisted in unpacking the complexity of planning for people engaged with multiple ser­ vices (that is, those with complex support needs). All action research team members were encouraging about the overall focus of the guide and made excellent suggestions about aspects of the content, language, and how concepts were represented. Feedback from the first round of action research consultations was incorporated into a second draft by the researchers in consultation with the graphic designers. Graphic designer Sandra commented on the iterative nature of the design process: The ‘Living the life’ I want planning guide needed to be far more interactive and had a very different target audience [to other guides]. Part of developing a good design is ensuring that it helps communication, enhances a message not distracts from it. So [for this guide] we used practical design elements so people with varying levels of expertise can navigate what otherwise might be quite dauntingly complex information.

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The action research team members were again asked to review the revised draft and offered further input by responding to a series of focused questions similar to those covered in relation to the first draft but including specific reference to changes made. Action research team members confirmed that first round revisions had significantly improved the quality of the guide and they suggested only minor changes. These were incorporated by the researchers and graphic designers into a third and final draft and again sent to the action research team for input, but no further changes were proposed. The penultimate version was sent to a select group of individuals within the government department that commissioned the research. The group requested some further minor changes which were incorporated and a final version was prepared by the graphic designers. The action research process was undertaken over approximately two months. As this description shows, it can be time and labour-intensive for academic researchers, co-researchers, and designers involved in action research. Taking this time is a necessary part of the action research process to ensure that genuine collaboration occurs. When co-researchers with disability and their supporters are involved, taking shortcuts risks the loss of their vital experi­ ential wisdom.

KT: Research to practice The final and approved version of the planning guide was disseminated in a variety of ways. Each of the body mapping research participants received a hard copy as did the service organisations which assisted with recruitment and running of the body mapping sessions. The guide was made available for free download from the websites of both the research team and the government department that com­ missioned the research. Following the release of the guide, the author Dew was commissioned by a peak organisation in the disability sector to develop and deliver training sessions on the guide. The training sessions were conducted with 50 disability support workers and family members in two Australian states using a body mapping ex­ ercise to engage attendees in understanding the planning content and the body mapping process. Given the interactive nature of the training sessions, the numbers for each group were capped at 25 attendees. The training was advertised via the peak organisation websites and social media platforms, and post-training feedback was collected on the day. Each of the half-day training sessions commenced with a theoretical overview of planning, complex support needs, and the body mapping method. Following this introduction, participants worked in small groups using one of four ran­ domly assigned scenarios with details of a person with intellectual disability and their support needs. The scenarios were drawn from the experiences of the participants in the original research project used to design the guide. JT, who participated in both the research project and the action research group informing

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the development of the planning guide, was engaged to produce three short video clips about his experience of being involved in body mapping to create a future plan. The video clips were used in the training sessions to ensure the views of a person with intellectual disability and complex support needs were re­ presented. Replicating the body mapping workshops held with people with disability, each of the training session groups drew a life-sized body outline and used supplied arts materials to represent identifying a goal and then making a plan as the scenario person. Feedback from attendees indicated that they had learnt valuable information about the evidence underpinning planning with a person with intellectual/cognitive disability and an appreciation of body mapping as an effective way of engaging this group in planning. The body mapping approach was described by both support workers who were present at the workshops run with people with intellectual disability and complex support needs and the training session attendees as an alternative way to interact with people within a planning context. This approach was, therefore, a conduit to practice change. One training session attendee described: Using the [body mapping] process to empower/engage/enrich [the plan­ ning experience for people with disability]. In addition to this chapter, the authors have published two peer-reviewed journal articles on Study 5, one a methodological paper describing the body mapping process and its adaptation for use with people with intellectual/cog­ nitive disability and complex support needs (Dew et al., 2018) and the other a theoretical overview of the aspects of self-determination revealed through analysis (Dew et al., 2019). Altmetrics on the Dew et al. publication show that it has been picked up and tweeted about by practitioners, academics, and mem­ bers of the public in both Australia and the UK. The work was also presented at two Australasian disability conferences.

Conclusion Body mapping provided us with a research method that encouraged and facilitated the engagement of participants with intellectual/cognitive disability and complex support needs. We paired body mapping with a combined KT, praxis, and action research approach to produce a practical, user-friendly planning guide for use by and with this population. The combination of method and approach ensured the active and meaningful inclusion of people with disability and other end users (family members and support workers) throughout the knowledge creation and knowledge dissemination aspects of the research. Collaboration with skilled gra­ phic designers ensured the high-quality production values of the final guide. Incorporating body map outlines into the guide validated the method as a useful tool for people with intellectual/cognitive disability and complex support needs, their family members and support workers.

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References Collings, S., Dew, A. and Dowse, L. (2018). “Testing it in the real world”: Action research to apply a conceptual framework to social care planning. Action Research, 1–15. Early online 27th February. doi:10.1177/1476750318761534. Dew, A. and Boydell, K.M. (2017). Knowledge translation: Bridging the disability research-to-practice gap. Research and Practice in Intellectual and Developmental Disabilities, 4(2), 142–157. doi:http://dx.doi.org/10.1080/23297018.2017.1315610. Dew, A., Collings, S., Dillon Savage, I., Gentle, E. and Dowse, L. (2019). ‘Living the life I want’: A framework for planning engagement with people with intellectual disability and complex support needs. Journal of Applied Research in Intellectual Disabilities, 32, 401–412. doi:10.1111/JAR.12538. Dew, A., Smith, L., Collings, S. and Dillon Savage, I. (2018). Complexity embodied: Using body mapping to understand complex support needs. Forum: Qualitative Social Research, 19(2), Article 4. Release May. doi:http://dx.doi.org/10.17169/fqs-19.2.2920. Freire, P. (1970). Pedagogy of the oppressed. Harmondsworth, UK: Penguin. Kothari, A. and Wathen, C.N. (2013). A critical second look at integrated knowledge translation. Health Policy, 109(2), 187–191. doi:10.1016/j.healthpol.2012.11.004. Rankin, J. and Regan, S. (2004). Meeting complex needs in social care. Housing, Care and Support, 7(3), 4–8. https://doi.org/10.1108/14608790200400016. Reason, P. and Bradbury, H. (2008). Introduction to groundings. In P. Reason and H. Bradbury (Eds.), The Sage handbook of action research. Participative inquiry and practice (2nd Edition, pp. 1–11). London, UK: Sage. Strnadova, I. and Walmsley, J. (2018). Peer-reviewed articles on inclusive research: Do coresearchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disability, 31, 132–141. doi:11.1111/jar.12379. Walmsley, J. and Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers.

CONCLUDING REMARKS Remembering the body Katherine M. Boydell and Treena Orchard

Katherine: Many authors in this text have engaged in body mapping with marginalised groups and found the method to be particularly beneficial in addressing complexity, particularly in revealing the invisible and often not talked about issues and for addressing intersectionality across multiple domains. The authors of the text are keen to highlight the importance of intersectionality that numerous oppressions are simultaneous, inseparable, and intertwined, in a complex set of social identities. For example, Collings et al. discuss the ways in which body mapping helped to disentangle the multiplicity of adverse life experiences that had led to women having a child removed from their care. The work of my colleagues and I in using body mapping in the early psychosis field has revealed the complexity of the mind-body connection. Has your body mapping work resonated with these identified benefits, such as revealing the invisible, highlighting complexity, and addressing intersectionality? If so, in what ways? Are there other benefits of body mapping that you have encountered? Treena: Absolutely! The analytical framework I developed was designed specifically to illuminate the layers of hidden meaning decoded in the visual and textual references that populated each body map. This helped to capture the breadth and depth of human experience, while also making room for the unique contours of participants’ lives. A multitude of factors intersected during the creation of the maps and their interpretation, many of which were informed the complex socioeconomic, political, and racialised identities of our participants. The issues of culture, sexuality, addictions, and trauma were particularly salient items that figured in our participants’ maps, their creative process, and how they reflected on the mapping workshops. Gender was another poignant cross-cutting factor, which I discuss in my book. For instance, the women tell their ‘strongest’ or most dense stories on the background surface of their maps, whereas for the men it is their bodies that hold the

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most potent meanings. This may reflect women’s preference for contextualised, interconnected communication strategies. The men consistently employed more images than the women, which contravenes hegemonic ideas about men using more ‘direct’ or precise ways of expressing themselves than women, who have traditionally been associated with emotionally driven modes of communication. Other intersecting factors emerged during the body mapping workshops, including the way that pre-existing social relationships among participants structured our shared experiences. The degree to which people are familiar or unfamiliar with one another, and in what context (that is, service agency, the streets, familial or other intimate connections), helped organisers to read the emotional tenor of the workshop space and determine what elements of the process to fine-tune to better suit the needs of participants. It also figures into our understanding of where participants are at during different points in the day and the overall experience. With respect to other benefits of body mapping, I can honestly say that I have never encountered a more transformative research experience. The experiences among myself, our facilitator and guide, and the participants were so profound that I decided to focus on them for one of the chapters. Indeed, I frame these experiences as one of the central ethical issues examined in the book, along with cultural appropriation and data analysis. To witness the re-storying of human experiences in settings marked by power inequity as well as shared vulnerabilities was life changing. Our participants provided similarly powerful accounts of the ways that the mapping workshops generated huge changes in their individual lives and socially. For many participants, the mapping experience was a turning point that helped them become more involved in HIV activities and to reconnect with themselves, one another, and certain family members. To play a small role in the generation of such powerful life change is humbling. Katherine: We have also found that the body mapping workshops represent a turning point for some participants. Only yesterday, I was at a body mapping media event to promote mental health month here in Sydney and one of our former body mapping participants informed me of the impact his participation in the sessions had been; so much so, that he has started his own creative workshop business to engage others impacted by mental health issues in the arts. In a recent review of body-map storytelling, Gastaldo et al. (2018) argue that body mapping should be considered a methodology for ‘resistance and transformation of the health sciences’ (p. 56). The authors of this text highlight some of the unique challenges encountered while using body mapping in research, including the time-consuming nature of the work, participant anxiety regarding their perceived creativity, the need to adapt body mapping for particular populations, and the cumbersome nature of larger-than-life body maps. As outlined in Chapter 4, in our own work engaging the general public in body mapping their experiences of anxiety, we have had to truncate the creation sessions from several sessions to a single 2- to 3-hour session. In other work, we have had to consider whether body map creators are rendered anonymous or not and the associated ethical issues concomitant with this. I am

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sure that you have experienced these challenges and more. Perhaps you could add to this list? Treena: Research costs are another important challenge, including the body mapping materials, food and participant honorariums (and gifts, if possible), securing adequate space for the workshops, knowledge translation activities, and ensuring that the trained facilitator(s) and any support staff are well compensated. The creation of funding opportunities for body mapping research would help offset these costs considerably. Developing additional training manuals that outline how other groups of researchers and/or community stakeholders have successfully adapted body mapping, while maintaining the therapeutic nature of the method, would be wonderful additions to the literature. An additional ‘cost’ associated with body mapping relates to our professional reputations and the tendency for arts-based projects to be accorded less scholarly value than quantitative and, sometimes, other qualitative work. I did not encounter any directly discrediting experiences, but while explaining my work to colleagues, they would often ask: ‘Fascinating, but how are you going to make sense of that material or publish it?’ Although these questions were not asked out of professional malice or snobbery, and reflect practical considerations that I had about this work, they also reflect the broader political and epistemological resistance to identifying arts-based initiatives as ‘real’ research. Although it can be more difficult to make this ‘material’ intelligible or accepted by peer-reviewed journals or publishers, that is not always the case. Doing more arts-based work, body mapping in particular, through tailored conferences, specific funding initiatives, and student training opportunities are ways that we can bring this valid, transformative work from the margins and a little closer to the centre. Katherine: As you identified, I think the challenges of engaging in this work as an academic scholar are indeed challenging. You stated earlier that you are often asked how to make sense of the body maps. Can you talk a bit about your analytic approach to body mapping? Treena: While laying out the foundations for my body mapping book, I needed to select some case studies or dominant issues that emerged as compelling and could serve as useful motifs through which to discuss analysis strategies and the various ethical issues we encountered. The topics of cultural appropriation and transformative experience surfaced quite early on, but the analysis piece took a bit longer to emerge. I recall looking at the women’s maps in our first workshop and thinking to myself: ‘How can I make sense of these complex maps in a way that does the work, emotional commitment, and resilience of these women justice?’ I surveyed the rather modest body mapping research landscape and found studies that identified different themes that were central to the participants’ experience and some commentary on the methodological innovation of body mapping within the qualitative canon. But they seemed to be insufficient to engage in deep analytical excavation and understanding of the wealth of information contained with the maps. I also noted that most studies focused on women’s experiences, which was a ‘problem’ for us because we included men in our study. Will gender impact

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the analysis in terms of procedure as well as outcome? If so, how and what interpretive and methodological lessons could we learn about body mapping? I began by classifying the data as ‘textual’ or ‘symbolic’ and then set about counting these data on each of the maps, which I also divided into segments: background, body, and support figure. As I began to count, I noticed distinct differences between our participant groups in terms of enumerated content (that is, much less on the men’s maps), thematic foci, and placement of themes across the three map layers. This was fascinating and enriched the gendered analysis, while also confirming – at least in my mind – that I was on the right track in terms of breaking down the interpretation in this manner. My approach includes enumeration, semiotics, discourse, critical health studies, social anthropology, and post-colonialism, which makes the analysis a bit unwieldy at times but also applicable or certainly of interest to body mapping enthusiasts in various fields of study. Looking back on the ‘axial embodiment’ framework and the way I chose to present the data, it feels comprehensive and also intimate with respect to the issues that feature in the participants’ maps as well as their experience as they recreated their lives on those huge pieces of paper. Katherine: In addition to the impact of creating body maps is the use of body maps as research dissemination, to communicate research findings. Although researchers may have funding and institutional requirements for how and where findings are communicated, there is an added responsibility to share what is learned with those who are most affected by the work, that is, participants and their allies and supporters. Body mapping has demonstrated the potential to push our boundaries of understanding and interpreting the world and much of this is in the manner in which we share the body mapping processes and outcomes. As outlined in the chapters in this text, we have seen that body mapping has been disseminated in a number of ways, including, for example, via installation exhibits, and the creation of planning guide. I know that you have drawn upon a multi-faceted dissemination for your body maps created by individuals impacted by HIV. These included an art show and dinner, t-shirts, postcards, booklets, and even body maps located in local pharmacies. Why did you use these particular dissemination approaches? Treena: Our knowledge translation strategies emerged quite organically and were a combination of excellent suggestions from Tricia, the facilitator and guide through the workshops, and myself. Tricia had the idea of the booklets, which were a beautiful and easily portable summary of the maps, the participants’ accompanying stories, and the project itself. The postcards were also her idea and worked well as a quick takeaway summary of body mapping and the nature of our collaborative work with the women in Vancouver. Wearing the women’s maps – embodying the body maps – on the t-shirts was a beautiful keepsake for the women and ourselves. Sharing food and publicly acknowledging our transformative experiences through the art show was appreciated by the women and their loved ones who joined us. Also, it was a respectful, kind way to close the work. The women’s

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maps hung in a women’s-only pharmacy and a clinic where many of our female participants went for healthcare services, outcomes that stemmed from our ongoing discussions with the women about where the maps should or could ‘live’ after the project was completed. Those who have read my book will note that we adopted many more dissemination strategies with the women than the men, which was because we had run out of money. That’s a bit embarrassing to admit but managing a large project over several years and multiple sites is challenging, and we didn’t have the sufficient funds available to conduct the same kinds of knowledge translation activities with the men. Katherine: In our body mapping research, we have ‘measured’ the impact of dissemination in a variety of ways including immediate visceral responses on postit notes, follow-up qualitative interviews, and pre- and post-measures of mental health literacy and stigma, when appropriate. We found, in our study of young people impacted by psychosis, that the body mapping installation provided an accessible method to expand audience reach and offered a way to understand the lived experience of psychosis and enhance mental health literacy. It conveyed the link between mind and body and the importance of attending to physical as well as mental health, and demonstrated strong potential for increasing empathy and understanding of lived experience. What strategies have you used to measure the impact of body mapping work? Treena: Similar to the approaches adopted by other authors in this collection, we conducted follow-up interviews with the participants. We also held check-ins and check-outs at the beginning and end of each workshop day, which was a very valuable way to know how participants were feeling emotionally and what they thought about the activities themselves. In addition, we touched base with the support staff members who were able to participate in the workshops, which was done on a daily basis during the workshops. Measuring impact beyond the immediate setting of the two workshops can be gauged by things like acceptance of publications (book, one small article, this chapter), interest shown at conferences and community presentations (very positive), and electronic communications from other researchers interested in doing body mapping (which is exciting). My body mapping experiences have inspired a new upper-year undergraduate course I’m teaching this term, called Creative Healing: Art, Health & Transformative Human Experiences. The students are fascinated with not only the method but also how body mapping enables them to learn so much about the lives of the participants and what research can look like. Katherine: In terms of disseminating body mapping research, as outlined in Appendix 1, you can see that our authors have produced a number of peerreviewed publications, lay-friendly reports and brochures, planning documents, art installations, and have also presented to scientific and public audiences. In terms of what the future holds for body mapping, I note that there is an increasingly burgeoning literature emerging that applies body mapping in diverse realms of health and social care, such as with individuals impacted by pain and injury (Tarr & Thomas, 2011), non-binary status (Furman et al., 2019), mental

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health support among female youth (Lys, 2018), young people and sexuality (Senior et al., 2014), and migration (Gastaldo et al., 2018). We have also featured chapters in this text that describe novel applications such as online body mapping, virtual reality body mapping, and drawing on wearable technology in body mapping. What are your thoughts on the future of body mapping in research? What do you think of these novel applications? Do you have plans for future body mapping projects? Treena: I think that these and other applications are fantastic as long as the therapeutic aspect of the method is included in one way or another. That’s a key argument I make in my book that the desire for methodological innovation can sometimes usurp the integrity of body mapping as a distinctively therapeutic method. All body mapping projects needn’t look identical or follow, line by line, the framework that our team did. But, given the innate potential for trauma and/ or being triggered while doing anything related to the body, we owe it to our participants and ourselves as witnesses to this transformative work to ensure that it is done safely. What that looks like can and should vary, and that’s one of the exciting areas to develop. What does safety look like in a virtual context? How does the specific focus of different body mapping projects inform or challenge what we know so far about ethical issues (that is, confidentiality and anonymity), interpersonal connections between participants and facilitators, and the different stakeholders who may interact with the findings. I’m also eager to see how different projects and practitioners will continue to erode the problematic binary of ‘art’ OR ‘research’ when it comes to body mapping work. How might this future work extend what art and research mean? I don’t have any specific body mapping projects on the horizon, other than a very abbreviated version that I am going to pilot in my new course that I discussed earlier. I’ll keep you posted! Katherine: Wonderful. I have no doubt that many will benefit from such a course. I look forward to the ways in which body mapping will emerge in the research space as a methodological tool to create, disseminate, and evaluate new knowledge.

References Furman, E., Singh, A.K., Wilson, C., D’Allessandro, F. and Miller, Z. (2019). ‘A space where people get it’: A methodological reflection of arts-informed community-based participatory research with nonbinary youth. International Journal of Qualitative Methods, doi: 10.1177/1609406919858530. Gastaldo, D., Rivas-Quarneti, N. and Magalhaes, L. (2018). Body-map storytelling as a health research methodology: Blurred lines creating clear pictures. Forum: Qualitative Social Research, 19(2), art. 3. doi: 10.17169/fqs-19.2.2858. Lys, C. (2018). Exploring coping strategies and mental health support systems among female youth in the Northwest Territories using body mapping. International Journal of Circumpolar Health, 77(1), doi: 10.1080/22423982.2018.146660.

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Orchard, T. (2017). Remembering the body: Ethical issues in body mapping research. New York, NY:Springer International Publishing. Senior, K., Helmer, J., Chenhall, R. and Burbank, V. (2014). ‘Young clean and safe?’ Young people’s perceptions of risk from sexually transmitted infections in regional, rural and remote Australia. Culture, Health & Sexuality, 16(4), 453–466. Tarr, J. and Thomas, H. (2011). Mapping embodiment: Methodologies for representing pain and injury. Qualitative Research, 11(2), 141–157.

APPENDIX 1 List of body mapping studies referred to in the book

2017

2016/2017 *Katherine Boydell Adèle de Jager Anna Tewson Priya Vaughan Patricia Morgan Jill Bennett George Khut

Study 2: Youth Anxiety project

Study 3: Public Anxiety projects

*Katherine Boydell Adèle de Jager *Anna Tewson Priya Vaughan

2013/2015 *Kate Senior Richard Chenhall

Study 1: Culture, Context and Risk study

Researchers/*authors

Year

Study

Conducted in classrooms or with community-based groups of young people

Thirty-five 2- to 3-hour sessions Group based

Body mapping process

Workshops with HIV and related programs unit Development of a gamebased resource

Three book chapters (including in this text) Five peer-reviewed articles

Dissemination strategies

Explored anxiety experiences

(b) 49 members of general public

One 2-hour session One-to-one; group setting Conducted at AGNSW

Conducted at National Institute of Dramatic Art (NIDA)

(a) 60 members of the public One 3-hour session One-to-one; group setting in New South Wales

(Continued)

Chapter in this text Sydney Science festival The BIG Anxiety festival

Scientific presentations

Nine young people with anxiety Four 2-hour sessions Facilitator guide (available at in New South Wales One-to-one; group setting in http://www.blackdog. school org.au) Explored experience of 13Plus visit to Art Gallery of to 18-year olds living with NSW school program anxiety and depression

Explored sexual decisionmaking for young people

171 Indigenous and nonIndigenous young people in three Australian states

Participants and study aim

132 List of body mapping studies

Study 5: Safeguarding Conversations in Planning project

2016

Study 4: Keeping the Body in Mind project

Researchers/*authors

*Katherine Boydell Adele de Jager *Anna Tewson Priya Vaughan Jackie Curtis Jeffrey Ball Simon Rosenbaum Megan Kalucy Phil Ward Andrew Watkins 2016/2017 *Angela Dew *Susan Collings *Isabella Dillon Savage Emma Gentle Leanne Dowse

Year

Study

Body mapping process

Conducted at community venue

30 adults with intellectual Five 4-hour sessions disability and complex support needs in New South One-to-one; group setting Wales Conducted at community Explored support for venues planning

Explored experience of a physical health intervention

Six young people impacted by Four x 3-hour sessions and first episode psychosis in New follow-up interview South Wales One-to-one; group setting

Participants and study aim

(Continued)

Planning resource (available at https://www.arts.unsw.edu. au/research/intellectualdisability-behavioursupport-program/) Workshops conducted in two Australian states which included Video recorded interview with a participant about body mapping Two peer-reviewed journal articles Conference presentations Chapters in this text

Peer-reviewed journal article Chapter in this text Scientific presentations Art installation dissemination event at NIDA

Dissemination strategies

List of body mapping studies 133

2016/2017 *Louisa Smith Kathy Ellem

2018

Study 7: Lost in Transition study

Study 8: Family Connections and Contact study

Body mapping process

31 young people with complex One 1- to 4-hour session support needs in three One-to-one; combination Australian states group setting and individual (some with support person) Explored complex youth transition experiences Conducted at service provider premises

Four 2-hour sessions 25 Indigenous adults with disability, carers and support Group-based mapping workers in New South Wales Conducted at premises of Explored culturally safe Aboriginal Community disability planning Controlled Organisations

Participants and study aim

*Susan Collings 12 birth mothers in New South One 2- to 3-hour session Amy Conley Wright Wales whose children were Margaret Spencer placed in out-of-home care Individual, co-facilitated with system parent advocate Explored barriers and facilitators Conducted at community to positive contact venues experiences

*Angela Dew Elizabeth McEntyre *Priya Vaughan Leanne Dowse First Peoples Disability Network

2017

Study 6: Culturally Safe Planning

Researchers/*authors

Year

Study

(Continued)

Conference presentations Poster presentation A peer-reviewed journal article Easy read research summary Research-to-practice summary Chapters in this text

Peer-reviewed journal articles Conference presentations Conference presentations Chapter in this text

Culturally specific planning resource (available at https://www.arts.unsw.edu. au/research/intellectualdisability-behavioursupport-program/) Conference presentations Peer-reviewed journal articles Chapter in this text

Dissemination strategies

134 List of body mapping studies

Year

2018 Study 9: Self-Determination of Adults with Intellectual Disability within the Context of Family

Study

Participants and study aim

Body mapping process

Explored family support for self-determination

*Bernadette Curryer Four mothers and their four One 2-hour session Roger Stancliffe adult children with Two-person dyads *Angela Dew intellectual disability in New Conducted at participants’ Michele Wiese South Wales homes

Researchers/*authors Conference presentations PhD thesis One peer-reviewed journal article Chapter in this text

Dissemination strategies

List of body mapping studies 135

INDEX

Note: Page numbers in italics denote figures; those in bold denote tables. Aboriginal young people 2, 8, 12–3; community mapping 53, 55; complex trauma in 32; dot painting 12–3; sexual decision-making in 8, 18; sexual relationships 18–9; statutory child removal 59 abuse 28 Acceptance and Commitment Therapy (ACT) 86 accessibility 51–3, 89 action research 114–5; in body mapping 116–7; cycle 119; testing and refining the planning guide with 117–20 ActionScript 2.0 72 active wearables 93, 101; see also wearable technology A-Frame 81 African Center for Healthy Cities xix AIDS 69, 124, 126, xvi–xix Ambron, E. 86 analgesics 85 Android smartphones 95, 95 anonymity 128 anxiety 2, 7, 15, 53–4, 82; body mapping experiences of 37–45; pervasiveness in society 38 apps: wearable body maps 94–7; web-based body maps 67–78 archiving, in VR mapping 84–5 Art Gallery of New South Wales 2–3, 39 art materials 47–8 art therapy 2 artificial intelligence (AI) 77–8 arts paper 48 Association for Computing Machinery (ACM) 69 auditory hallucinations 82 augmented reality (AR) 81, 94–5, 100; see also virtual reality (VR)

avatar 81–4, 88; see also virtual reality (VR) axial embodiment 63–4, 126 Axios 77 Bagnoli, A. 58 Bailenson, J. 88 Bakhtin, M.M. 6 Bambanani Women’s Group 69, xvii–xviii barriers, to body mapping 14–6 Barthes, Roland 7 Bateson, G. 100 beads 48 Becker, B. 76–7 Bekkering, H. 70 Berger, E. 71 The Big Anxiety festival 38, 43 biometrics 81 Black, Kylie 106 Black Dog Institute 39, 53 black paper 48, 53–4; see also art materials Blakesee, M. 68 Blakesee, S. 68 Blocks 82 Body Diagrams online pain mapping tool 69; see also web-based body mapping application body mapping: of anxiety experiences 37–45; as art therapy 27; arts-based 4–5, 104–12; attributes of 37, 42; challenges in 124–5; and complex trauma 27–35; costs of 125; defined 1; described 18; enablement in 92; future directions 127–8; group method 18–25; and installation art 104–12; list of studies on 132–5; literature review 69–71; logistics of 47–55; with marginalised and vulnerable populations 2, 6–16; meaning-making 57–65; multiple data sources in 3, 57–65; overview 1–2;

Index

versus pain mapping 69; preparation to 40; uses of 6; and virtual reality 3–4, 81–90; and wearable technology 92–101; web-based 3–4, 67–78 body mapping in the galleries (BMiG): benefits of 43; The Big Anxiety festival 39; body tracing 40–1; completing body maps 41–2; creating body maps 41; ethical challenges in 44; future of 45; methodological challenges in 43–4; overview 38; participants 39–40; preparation to 40; self-reflection in 40, 43; sessions 39; sharing experiences 41–2 body mapping wearables 128; app 94–7; designing 97–100; future directions 100; image recognition in 98; interactivity in 99; multiple targets in 98; overview 4; sensors 99 body maps: completing 41–2; creating 41; defined 6; described 67–8; keys 57, 61; ownership of 44; photographing 54–5; as planning tool 114–21; as research data 3, 47–55; social sharing of 89; storing 54–5; symbols 57–8, 60, 62; template 68 body outlines 52; pre-prepared 51 body ownership illusion 86–7; see also virtual reality (VR) body sensation maps 70 body tracing 40–1 body transfer illusion 86–7 body-as-interaction-surface (BAIS) 93; see also wearable technology body-inspired metaphor (BIM) 93; see also wearable technology booklets 126 Boydell, Katherine 5, 7–15, 38, 95, 111, 123–8 Braun, V. 108 Bruzzese, Ross 107 Butler, J. 92 Canadian AIDS Treatment Information Exchange (CATIE) xviii categorical analysis 63 Center for Social Studies Research xix challenges to 43 check-ins/outs 127 Chenhall, R. 18–9 child protection system 29 chronic pain, virtual reality (VR) body mapping for 85–7 Clark, A. 58 Clarke, V. 108 cloud 93

137

collages 48 collective wearables 93, 101 Collings, Susan 7–8, 10, 14–5, 115, 123 colonisation 28 coloured pencils 47 Community Engagement Program 39 community mapping 53 community-based organizations 9 compassion therapy 82 complex childhood trauma 2, 27–35; awareness 35; body mapping process for 31–4; causes of 28; defined 28; effects of 28–9; externalising the wounded child 31–4; implications for practice 35; and map of the world 28–9; mindfulness for 35; and mother-child bond 29–30; narrative mosaics of 29–31; physical expression in 32; research implications 34–5; shock from 32; from statutory child removal 34; symptoms of 28; in transsexual young people 31; wounded child 31–4 complexity 11–3, 19–21, 123 Computer Human Interaction (CHI) conference 69 confidentiality 44, 128 content analysis 60–2, 126 conversations, mapping 18–25; educational potential of 23–4; group 21–2; limitations 24; Lost in Transition: Supporting young people with complex support needs study 19; multilayered narrative in 21–2; Our Lives, Culture, Context and Risk (Our Lives) study 18–9; questions 22–3; testing ideas 22 coping 59 Cornwall, A. 37 costs 125 craft materials 33 crayons 47 Creative Healing: Art, Health & Transformative Human Experiences (course) 127 Creative Works Studio 74 Cuddynotes, Amy 70 cultural accessibility 53 cultural appropriation 125 cybersickness 87 data tables 64 De Jager, A. 1, 37, 83 dementia 15 depression 82 Dew, Angela 7–9, 11–4, 120–1

138

Index

dialogue 6–7, 15, 85 Dieu, Sophie 105 digital body mapping, future of 78 digital painting palette, in VR mapping 84 Digital Therapeutic Alliance 85–6 direct body-based interfaces 93 disabilities, people with 62 discrimination 31 disruptive technologies 100 dissemination 127; impact of 127 dot painting 12–3 Draper, A. 37, 67 dyads 49–50 Edwards, G. 77 emBody tool 69–70; see also web-based body mapping application emotional violence, impact of 32–33 enablement 92 Enframing technologies 71 ethics clearance 11 Ethiopia xviii EventBrite 39 exclusion 8 experiences: of researchers and participants 124; sharing 41–2; transformative 124–5 expression of interest 10 extended reality (ER) 81; see also virtual reality (VR) body mapping fabric 48 facilitators 38, 44, 68, 76; in VR mapping 83 field notes 58 fight or flight response 27–8 films 106 ‘fly-in-fly-out’ phenomenon 11 focus groups 8, 21 follow-up interviews 127 Frank, A. 58 Fryszberg, Isabel 74 game engines 81 Gardner, P. 78 Gastaldo, Denise 7, 38, 43, 47, 58, 75, 124 Gate Control Theory 86 gatekeepers 10 gays 22 gender: as cross-cutting factor 123–4; as a performative act 92 gender fluid 22 glitter 48 Global Village 68 glue 48

Google: AI 77–8; Poly 82; Tilt Brush 4, 82 Grandmothers: The unsung heroes of Africa (film) 68 Gravity Sketch 82 Gray, J. 111–2 grief, symbolic representations of 12 group body mapping: asking questions in 22–3; and complexity 19–21; educational potential of 23–4; limitations of 24; multilayered narrative in 21–2; and sensitive issues 19–21; testing ideas in 22 groups 20–1 Guston, Philip 39 Hacmun, I. 82 haptics 89 head mounted displays (HMDs) 81, 86, 89; see also virtual reality (VR) Health, Embodiment, and Visual Culture conference 70 health issues 14–5 Heiddeger, Martin 71 historical trauma 28 HIV/AIDS 69, 124, 126, xvi–xix Hoffman, H.G. 86 homosexuality 22 HTC Vive Focus 81 Huang, P 93 human computer interaction (HCI) 81 Ihde, D. 71 image recognition 98 inclusion 89 inclusive research 116 indigenous young people 2, 12–3 informed consent 44, 88 installation art 4–5, 7, 104–12, 127; artist response 105–7; audience feedback 108, 111; audience reach 108; audience response 107–10; body maps in 105; empathy and understanding in 109; exhibition of installation art 105–7; future directions 112; mental health literacy in 109–10; mind-body connection in 108–9; overview 104–5; representation in 109; Snakes and Ladders 106–7; themes 108 intellectual/cognitive disability, people with 116; axial embodiment for 63; barriers to body mapping in 15; body mapping by 13; body mapping for 7–8; body mapping in 8; building trust with 9; combined approach for 5; group body

Index

mapping 23; non-language-based techniques for 61; planning guide for 51, 114, 116–7, 119–21; recruiting 9; space for 48; working one-on-one with 54 International AIDS Conference 68 Internet 67, 93 intersectionality 11–3, 123 interviews 8, 127 Jaatun, E.A.A. 69–70 Jamaica xix Jang, A. 69–70 Johnson, K. 116 Keeping the Body in Mind (KBIM): artist response 105–7; audience feedback 108, 111; audience reach 108; audience response 107–10; body maps in 105; empathy and understanding in 109; exhibition of installation art 105–7; future directions 112; mental health literacy in 109–10; mind-body connection in 108–9; overview 104–5; representation in 109; themes 108 keys 57, 61 Khayelitsha, South Africa xvi knowledge exchange 14 knowledge translation (KT) 114–115, 120–1, 126; in body mapping 116–7 Kontos, P. 111–2 Laird, Melissa 105 Lalloo, C. 70 Lapum, J. 110 layering of content 13 lesbians 22 Life Happens game 23 Living the life I want: A guide for planning 114–21; action research in 115, 117–20; in body mapping 116–7; body mapping in the galleries (BMiG) 116–7; download site 114; knowledge translation in 115, 120–1; overview 51, 114–5; praxis in 115; research process in 118; testing and refining 117–20 Living with X xviii locations, planning for 50 logistics of body mapping 15, 47–55; accessibility 51–3; art materials 47–8; experiences from the field 49–51, 53–4; location planning 50; planning guides 51; pre-planning 53–4; pre-prepared outlines 51; space 48; time 53–4; use of participants’ homes 49–50

139

London School of Economics 70 Long Life: Positive HIV stories (Morgan) xvii–xix Lost in Transition: Supporting young people with complex support needs study 19, 23 Luka 72 MacCormack, C.P. 37, 67 machine learning 85 magazines 48, 50 marginalised groups 6–17, 104–12; barriers to body mapping in 14–6; building trust with 9–11; complexity 11–3; hidden stories 13–4; intersectionality 11–3; storytelling in 13–4 Marshall, L. 68 Masterpiece VR 82 maternal love 30 Mbeki, Thabor xvi McLuhan, Marshall 71 McMaster University 68, 72 meaning-making 57–65; axial embodiment 63–4; combined approaches in 64–5; with narrative inquiry 58–60; subconscious privileging of 58; textual content analysis 60–2; visual content analysis 60–2; with visual data 57–8 Medecins Sans Frontieres (MSF) xvi Melzack, R. 69, 86 memory-box workshops xvi mental health literacy 109–10 Metro Toronto Convention Centre 68 mind-body connection 12; in installation art 108–9 mindfulness 3, 35, 40, 83 mixed media 106 mixed mode (MM) 93 mixed reality (MR) 81; see also virtual reality (VR) Morgan, Jonathan xvi, xvii–xviii MorphoSource 90 mother-child bond 29–30 Mozilla 81 Mozilla A-Painter 82 multidisciplinary teams 11 multilayered narrative 21–2 multiple data sources 3, 57–65; axial embodiment 63–4; combined approaches for 64–5; narrative inquiry 58–60; textual content analysis 60–2; visual content analysis 60–2; visual data 57–8 Multiple Resources Theory 86

140

Index

narrative inquiry 58–60 National Disability Insurance Scheme (NDIS) 116 National Institute of Dramatic Art (NIDA) 4, 10, 105, 107 neglect 28 New South Wales 116 Nummenmaa, L 69–70 NVivo 12 software 108

praxis 114–5; in body mapping 116–7 pre-planning 53–4 pre-prepared outlines 51 privacy 44 Proteus effect 88 psychosis in young people: arts-based approach for 4–5; body mapping for 2, 10, 123, 127; installation art for 104, 106, 108–9; narrative approach for 58

object mapping (OM) 93 Oculus Medium 4, 82 Oculus Quest 81 Oculus Quill 4, 82 onboarding 83 online body mapping 89 Ontario HIV Treatment Network xix opioids 85 Orchard, Trina 5, 44–5, 63, 123–8 Our Lives, Culture, Context and Risk (Our Lives) study 18–9, 22 outlines 52; pre-prepared 51 ownership of body maps 44

questions, asking 22–3

pain: acceptance and commitment therapy for 86; analgesics 85; mapping of, versus body mapping 69; mapping tools 69–70; virtual reality (VR) body mapping for 85–7 paint sticks 47–8 paints 47–8 partnerships: in body mapping research 9–11; with service providers 34 passive wearables 93, 101; see also wearable technology perception of self 88 phobias 82 photo elicitation 60 photographs 44, 48, 54–5, 57, 106 photovoice 60 physical disabilities 51 placebo 86 planning guide 51, 114–21; action research in 115, 117–20; in body mapping 116–7; body mapping in the galleries (BMiG) 116–7; knowledge translation in 115, 120–1; overview 114–5; praxis in 115; research process in 118; testing and refining 117–20 poems 106 Pókemon Go 21 polyphony 6 positive psychology 3 postcards 126

recovery 59 Regional Psychosocial Support Initiative (REPSSI) xviii research, inclusive 116 research data 3; photographing and storing maps 54–5; sexual decision-making in 84–5 researchers: Aboriginal 62; in group body mapping 22–3; multidisciplinary teams 11; partnerships 9–11 research-to-practice partnerships 10 re-storying 14, 21, 124 Riessman, K. 60 Road to Well Being Project xviii safe partners 14 Sanchez-Vives, M.V. 82 self-objectification 88 self-reflection 40 Senior, Kate 8, 11, 13–6, 18–9, 24 sensitive issues 19–21 sensors 81, 99 sensory disabilities 8, 51 sexual relationships 18–9 sexual risks 13 sexuality 13–4, 22 sexually transmitted infection (STI) 14, 16 shock 32 Sinding, C. 76 Singh, Deb 68 Slater, M. 82 smart ecosystems 99 smart phones 95, 95, 100 Smith, Louisa 7–15 Snakes and Ladders (installation) 106–7 SnowWorld 86 social relationships, pre-existing 124 Solomon, J. 37–8, 43, 48, 68, 75 Something Living exhibition 39 sound palette, in VR mapping 84 soundscapes 106 South Africa 27, xix, xvi

Index

space 48 static wearables 93, 101; see also wearable technology statutory child removal: childhood trauma from 34; parental trauma from 29–30, 32–3 Stephen Lewis Foundation 68 stereotypes 22 Stinson, J. 70 storytelling 14, 21–2 stressors 28 Strnadova, I. 116 subtitles, in VR mapping 89 Sullivan, P. 7 support person 38 survival 59 SwimOutlet 77–8 Sydney Science Festival (SSF) 53 symbols 57–8, 60, 62 system-induced trauma 35 Szilagyi, M. 35 tables 48, 50 Tanzania xviii Tarr, Jenn 70 testimonia 4, 12, 14, 16, 57–9, 105, 109, 117 texts 47 textual content analysis 60–2, 126 textual date 58 thematic analysis 15 themes 60 Thomas, H. 70 3D painting and sculpting programmes 82 Ticho, S 77 time 53–4 Torgerson, W.S. 69 Toronto City Hall 7 Toronto Rape Crisis Centre/Multicultural Women Against Rape (TRCC/ MWAR) 64 Toronto Rehabilitation Institute 68 Torres Strait Islanders 8; community mapping 53 tracing 40–1 tracing book 69 transphobia 31 transsexual young people 31 trauma 2, 27–35; awareness 35; body mapping process for 31–4; causes of 28; defined 28; effects of 28–9; externalising the wounded child 31–4; implications for practice 35; and map of the world 28–9; mindfulness for 35; and mother-

141

child bond 29–30; narrative mosaics of 29–31; physical expression in 32; research implications 34–5; shock from 32; from statutory child removal 29–30, 32–3; symbolic representations of 12; symptoms of 28; system-induced 29, 35; in transsexual young people 31 Treatment Action Campaign (TAC) xvi triangulation 57–8 Truth and Reconciliation Commission (TRC) xviii undocumented workers 7 Unity game engine 81, 90, 95, 97 University of New South Wales Art & Design 39 Unreal game engine 81 user interface, in VR mapping 84 Virtual Meditative Walk,’ 86 virtual reality (VR) 3–4, 81–90; applications of 81–2; in art therapy 82; versus augmented reality (AR) 94; hardware 81; overview 81; 3D drawing platforms 82; translating body mapping into 82–5 virtual reality (VR) body mapping 82–5, 128; accessibility of 89; analysis in 84–5; application to chronic pain management 85–7; archiving in 84–5; audio recordings 84; avatar 83–4, 88; biofeedback-based 86; co-design 89; cybersickness in 87; data privacy 88; digital painting palette in 84; illustrations in 83–4; inclusive inputs/ outputs 89; informed consent in 88; machine learning in 85; mindfulness in 83; onboarding participants in 83; patient voice in 89; and perceptual manipulation 88; Proteus effect 88; psychological safety of 87; social sharing 89; sound palette in 84; user interface 84 Virtual Sandtray 82 visual content analysis 60–2 visual images 13, 57 visual impairment 51 Vuforia AR toolkit 95, 98 vulnerable groups 6–17, 104–12; barriers to body mapping in 14–6; building trust with 9–11; complexity 11–3; hidden stories 13–4; intersectionality 11–3; storytelling in 13–4 Wall, L. 86 Walmsley, J. 116 wearable body maps 92–101, 128; app

142

Index

94–7; designing 97–100; future directions 100; image recognition in 98; interactivity in 99; multiple targets in 98; overview 4; sensors 99 wearable technology: active 93, 101; body mapping 97–100; collective 93, 101; defined 93; examples of 93; interfaces 93; overview 4; passive 93, 101; static 94, 101 web-based body mapping application 67–78; buttons 72; colour palette 72–3; colours 72; design and layout changes 73–74; development of 71–5; future directions 77–8; iterations 72–3; lines 72; literature review 69–71; overview 3–4, 68; pilot testing 74–5; theoretical perspective 71 Webster, A. 77 WebVR 81, 90 white paper 48

Wickens, C.D. 86 women: in body mapping in the galleries (BMiG) 39–40; body mapping strategies 37, 123–7; in group body mapping 20, 23–4; with intellectual disability 9; in lesbian relationship 24; living with AIDS 24, 69, xvii–xviii; trauma from statutory child removal 12, 14, 29–30, 32–3; t-shirts as body maps 126 workshops 38, 116–7; as turning point for participants 124 wounded child 31–4 Yee, N. 88 young people, with cognitive disabilities 8 young people with psychosis 2, 10 Zambia xviii Zimbabwe 37