The Routledge Handbook of Disability Activism [1 ed.] 0815349300, 9780815349303

Table of contents :
Dedication
Contents
List of contributors
Acknowledgements
Part I: Introduction – contextualising disability activism
Introducing disability activism • Maria Berghs, Tsitsi Chataika, Kudakwashe Dube & Yahya El-Lahib
A virtual roundtable: re/defining disability activism with emerging global South disability activists • Tsitsi Chataika (ed), Samantha Sibanda, Abraham Mateta & Krishna Bahadur Sunar
Part II: Neoliberalism and austerity in the global North
1 The impact of neoliberal politics on the welfare and survival of chronically ill and disabled people • Mo Stewart
2 ‘These days are ours’: young disabled people’s experiences of activism and participation in social movements • Miro Griffiths
3 The links between models and theories to social changes as seen and understood by activists and academics: what works? • Joanne Sansome
4 Figures: an artist-activist response to austerity • Liz Crow
5 As technology giveth, technology taketh away • John Rae
Part III: Rights, embodied resistance and disability activism
6 Exercising intimate citizenship rights and (re)constructing sexualities: the new place of sexuality in disability activism • Alan Santinele Martino & Margaret Campbell
7 ‘I show the life, I hereby express my life’: activism and art in the political debate between social movements and institutions on D/deaf bodies in Italy • Fabrizio Loce-Mandes
8 Resisting the work cure: mental health, welfare reform and the movement against psychocompulsion • Denise McKenna, Paula Peters & Rich Moth
9 My disability, my ammunition, my asset in advocacy work • Tafadzwa Rugoho
Part IV: Belonging, identity and values: diverse coalitions for rights
10 Disabled mothers of disabled children: an activism of our children and ourselves • Liz Crow & Wendy Merchant
11 Dementia as a disability • Kate Swaffer, Brian LeBlanc & Peter Mittler
12 Voices from survivors of forced sterilisations in Japan: Eugenics Protection Law 1948–1996 • Nagase Osamu
13 Indigenous Species • Khairani Barokka
Part V: Reclaiming social positions, places and spaces
14 Disability sport and social activism • Damian Haslett & Brett Smith
15 Naples in the hands: activism for aesthetic enjoyment • Ciro Pizzo, Carmela Pacelli & Maria Grazia Gargiulo
16 Pissed off!: disability activists fighting for toilet access in the UK • Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp, Eleanor Lisney & Sarah Rennie
17 Mobility-as-occupation: non-confrontational activism in Trinidad and Tobago • Sylette Henry-Buckmire
Part VI: Social media, support and activism
18 The tragedy of the hidden lamps: in search of disability rights activists from the global South in the digital era • Nqobani Dube
19 ‘With the knife and the cheese in hand!’: a virtual ethnography of the cyber-activist disabled movement in Brazil and its transnational impact • Marco Antonio Gavério, Anahi Guedes de Mello & Pamela Block
20 Australia’s treatment of Indigenous prisoners: the continuing nature of human rights violations in West Australian jail cells • Hannah McGlade
21 ‘Lchad Poland’ and the fight against inequality: the role of internet advocacy in cases of a rare genetic condition • Anna Chowaniec-Rylke
Part VII: Campus activism in higher education
22 Beyond random acts of diversity: ableism, academia & institutional sites of resistance • Stephanie J. Cork, Beth Douthirt-Cohen, Kelly M. Hoffman, Paul T. Jaeger & Amanda Strausser
23 At the margins of academia – on the outside, looking in: refusing, challenging and dismantling the material and ideological bases of academia • Armineh Soorenian
24 Sensitisation: broadening the agenda to ‘include’ persons with disabilities • Pragya Deora
25 Rainclamation: how installation art can reclaim space, transform collective suffering into poetic resistance and bring aesthetics to disabled viewers • Erin Davenport
Part VIII: Inclusive pedagogies, evidence and activist practices
26 Zimbabwean disability activism from a higher education perch: an uncertain present but exciting future • Martin Musengi
27 Research as activism?: perspectives of people labelled/with intellectual and developmental disabilities engaged in inclusive research and knowledge co-production • Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine Austin, Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa Horan-LaRoche, Rainbow Hunt, Nathan Gray, Rex Marchi, Donna McCormick, Romeo Dontae Tresean Biggz Pierre & Sean Rowley
28 Reinventing activism: evidence-based participatory monitoring as atool for social change 369Marcia Rioux, Paula Campos Pinto, Dagnachew Wakene, Rados Keravica& Jose Viera
Part IX: Enabling human rights and policy: Transition: international politics
29 Implementation of CRPD in the post-Soviet region: between imitation and authenticity • Egle Sumskiene, Violeta Gevorgieniene & Rasa Geniene
30 Swedish disability activism: from welfare to human rights? • Marie Sépulchre & Lars Lindberg
31 Gendered disability advocacy: lessons from the Girl Power Programme in Sierra Leone • Emma Frobisher, Willem Elbers & Auma Okwany
32 ‘We need not remake the past’: rebuilding the disability movement in Toronto, Canada • Melissa Graham
Part X: Conclusion – the coming challenges and future directions
33 Causes and effects of claims for rights: why mainstreaming in Africa matters • Kudakwashe Dube
34 Unsettling realities and rethinking displacement: transforming settlement services for refugees, migrants and people with intellectual disabilities • Natalie Spagnuolo & Yahya El-Lahib
35 Disability futures: activism futures and challenges • Maria Berghs, Tsitsi Chataika, Yahya El-Lahib & Kudakwashe Dube
Index

Citation preview

THE ROUTLEDGE HANDBOOK OF DISABILITY ACTIVISM

The onslaught of neoliberalism, austerity measures and cuts, impact of climate change, ­protracted conflicts and ongoing refugee crisis, rise of far right and populist movements have all negatively impacted on disability. Yet, disabled people and their allies are fighting back and we urgently need to understand how, where and what they are doing, what they feel their challenges are and what their future needs will be. This comprehensive handbook emphasizes the importance of everyday disability a­ ctivism and how activists across the world bring together a wide range of activism tactics and ­strategies. It also challenges the activist movements, transnational and emancipatory politics, as well as providing future directions for disability activism. With contributions from senior and emerging disability activists, academics, students and practitioners from around the globe, this handbook covers the following broad themes: • • • • • • • • • •

Contextualising disability activism in global activism Neoliberalism and austerity in the global North Rights, embodied resistance and disability activism Belonging, identity and values: how to create diverse coalitions for rights Reclaiming social positions, places and spaces Social media, support and activism Campus activism in higher education Inclusive pedagogies, evidence and activist practices Enabling human rights and policy Challenges facing disability activism

The Routledge Handbook of Disability Activism provides disability activists, students, academics, practitioners, development partners and policy makers with an authoritative framework for disability activism. Maria Berghs is an anthropologist with a PhD in sociology and social policy. She works in the field of medical anthropology and sociology, specialising in disability studies. Her research interests include disability, global health (sickle cell), humanitarianism, ethics, gender and West Africa (Sierra Leone).

Tsitsi Chataika is the Chairperson and a Senior Lecturer in disability and inclusive education in the Department of Educational Foundations, University of Zimbabwe. Her recent publication is The Routledge Handbook of Disability in Southern Africa. Yahya El-Lahib is a long-time disability activist and Assistant Professor at the Faculty of Social Work, University of Calgary. His research focuses on the intersection of disability and displacement as interlocking systems of oppression that continue to shape the marginalization experiences of people with disabilities within and outside state borders. Kudakwashe Dube is the Chief Executive Officer (CEO) of the Africa Disability Alliance and has over 30 years of experience designing, managing, evaluating and monitoring development and disability programmes with international and grassroots movements. He is also Chair of Trustees of ADD International that fights for independence, equality and opportunities for disabled people living in poverty, alongside organisations of disabled people.

ROUTLEDGE INTER NATIONA L H A N DBOOKS

ROUTLEDGE INTERNATIONAL HANDBOOK OF POVERTY Edited by Bent Greve ROUTLEDGE INTERNATIONAL HANDBOOK OF NEW DIGITAL PRACTICES IN GALLERIES, LIBRARIES, ARCHIVES, MUSEUMS AND HERITAGE SITES Edited by Hannah Lewi, Wally Smith, Dirk vom Lehn and Steven Cooke ROUTLEDGE INTERNATIONAL HANDBOOK OF HUMAN TRAFFICKING A Multi-Disciplinary and Applied Approach Edited by Rochelle L. Dalla and Donna Sabella THE ROUTLEDGE HANDBOOK OF COMPARATIVE RURAL POLICY Edited by Matteo Vittuari, John Devlin, Marco Pagani and Thomas Johnson ROUTLEDGE INTERNATIONAL HANDBOOK OF MASCULINITY STUDIES Edited by Lucas Gottzén, Ulf Mellström and Tamara Shefer ROUTLEDGE HANDBOOK OF EUROPEAN WELFARE SYSTEMS, 2E Edited by Sonja Blum, Johanna Kuhlmann and Klaus Schubert ROUTLEDGE INTERNATIONAL HANDBOOK OF HETEROSEXUALITIES STUDIES Edited by James Joseph Dean and Nancy L. Fischer

For more information about this series, please visit: www.routledge.com/Routledge-InternationalHandbooks/book-series/RIHAND

THE ROUTLEDGE HANDBOOK OF DISABILITY ACTIVISM

Edited by Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and Kudakwashe Dube

First published 2020 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 © 2020 selection and editorial matter, Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and Kudakwashe Dube; individual chapters, the contributors The right of Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and Kudakwashe Dube to be identified as the authors 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 A catalog record has been requested for this book ISBN: 978-0-8153-4930-3 (hbk) ISBN: 978-1-351-16508-2 (ebk) Typeset in Bembo by codeMantra

This book is dedicated to the people who have gone before us; who set the foundations for disability rights, those who are fighting now to ensure continued justice, equality and equity; and to those who come after us who with more sharpened advocacy and lobbying skills will build a more inclusive world. In memory of Shamiso Michelle Dube (29.12.2000–28.03.2002) ‘It’s just a world where all things come and go, It’s just a world where all things come and go, Don’t you cry, don’t despair; I went – it was my time to go.’

CONTENTS

List of contributors xiv Acknowledgements xxviii PART I

Introduction – contextualising disability activism 1 Introducing disability activism 3 Maria Berghs, Tsitsi Chataika, Kudakwashe Dube & Yahya El-Lahib A virtual roundtable: re/defining disability activism with emerging global South disability activists 21 Tsitsi Chataika (ed), Samantha Sibanda, Abraham Mateta & Krishna Bahadur Sunar PART II

Neoliberalism and austerity in the global North 39 1 The impact of neoliberal politics on the welfare and survival of chronically ill and disabled people 41 Mo Stewart 2 ‘These days are ours’: young disabled people’s experiences of activism and participation in social movements 57 Miro Griffiths 3 The links between models and theories to social changes as seen and understood by activists and academics: what works? 71 Joanne Sansome ix

Contents

4 Figures: an artist-activist response to austerity 81 Liz Crow 5 As technology giveth, technology taketh away 87 John Rae

PART III

Rights, embodied resistance and disability activism 95 6 Exercising intimate citizenship rights and (re)constructing sexualities: the new place of sexuality in disability activism 97 Alan Santinele Martino & Margaret Campbell 7 ‘I show the life, I hereby express my life’: activism and art in the political debate between social movements and institutions on D/deaf bodies in Italy 110 Fabrizio Loce-Mandes 8 Resisting the work cure: mental health, welfare reform and the movement against psychocompulsion 128 Denise McKenna, Paula Peters & Rich Moth 9 My disability, my ammunition, my asset in advocacy work 144 Tafadzwa Rugoho

PART IV

Belonging, identity and values: diverse coalitions for rights 155 10 Disabled mothers of disabled children: an activism of our children and ourselves 157 Liz Crow & Wendy Merchant 11 Dementia as a disability 171 Kate Swaffer, Brian LeBlanc & Peter Mittler 12 Voices from survivors of forced sterilisations in Japan: Eugenics Protection Law 1948–1996 182 Nagase Osamu 13 Indigenous Species 190 Khairani Barokka

x

Contents PART V

Reclaiming social positions, places and spaces 195 14 Disability sport and social activism 197 Damian Haslett & Brett Smith 15 Naples in the hands: activism for aesthetic enjoyment 209 Ciro Pizzo, Carmela Pacelli & Maria Grazia Gargiulo 16 Pissed off!: disability activists fighting for toilet access in the UK 219 Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp, Eleanor Lisney & Sarah Rennie 17 Mobility-as-occupation: non-confrontational activism in Trinidad and Tobago 232 Sylette Henry-Buckmire PART VI

Social media, support and activism 245 18 The tragedy of the hidden lamps: in search of disability rights activists from the global South in the digital era 247 Nqobani Dube 19 ‘With the knife and the cheese in hand!’: a virtual ethnography of the cyber-activist disabled movement in Brazil and its transnational impact 259 Marco Antonio Gavério, Anahi Guedes de Mello & Pamela Block 20 Australia’s treatment of Indigenous prisoners: the continuing nature of human rights violations in West Australian jail cells 274 Hannah McGlade 21 ‘Lchad Poland’ and the fight against inequality: the role of internet advocacy in cases of a rare genetic condition 289 Anna Chowaniec-Rylke PART VII

Campus activism in higher education 297 22 Beyond random acts of diversity: ableism, academia & institutional sites of resistance 299 Stephanie J. Cork, Beth Douthirt-Cohen, Kelly M. Hoffman, Paul T. Jaeger & Amanda Strausser xi

Contents

23 At the margins of academia – on the outside, looking in: refusing, challenging and dismantling the material and ideological bases of academia 315 Armineh Soorenian 24 Sensitisation: broadening the agenda to ‘include’ persons with disabilities 323 Pragya Deora 25 Rainclamation: how installation art can reclaim space, transform collective suffering into poetic resistance and bring aesthetics to disabled viewers 330 Erin Davenport PART VIII

Inclusive pedagogies, evidence and activist practices 339 26 Zimbabwean disability activism from a higher education perch: an uncertain present but exciting future 341 Martin Musengi 27 Research as activism?: perspectives of people labelled/with intellectual and developmental disabilities engaged in inclusive research and knowledge co-production 354 Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine Austin, Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa HoranLaRoche, Rainbow Hunt, Nathan Gray, Rex Marchi, Donna McCormick, Romeo Dontae Tresean Biggz Pierre & Sean Rowley 28 Reinventing activism: evidence-based participatory monitoring as a tool for social change 369 Marcia Rioux, Paula Campos Pinto, Dagnachew Wakene, Rados Keravica & Jose Viera PART IX

Enabling human rights and policy: Transition: international politics 383 29 Implementation of CRPD in the post-Soviet region: between imitation and authenticity 385 Egle Sumskiene, Violeta Gevorgieniene & Rasa Geniene 30 Swedish disability activism: from welfare to human rights? 398 Marie Sépulchre & Lars Lindberg

xii

Contents

31 Gendered disability advocacy: lessons from the Girl Power Programme in Sierra Leone 412 Emma Frobisher, Willem Elbers & Auma Okwany 32 ‘We need not remake the past’: rebuilding the disability movement in Toronto, Canada 428 Melissa Graham PART X

Conclusion – the coming challenges and future directions 435 33 Causes and effects of claims for rights: why mainstreaming in Africa matters 437 Kudakwashe Dube 34 Unsettling realities and rethinking displacement: transforming settlement services for refugees, migrants and people with intellectual disabilities 452 Natalie Spagnuolo & Yahya El-Lahib 35 Disability futures: activism futures and challenges 465 Maria Berghs, Tsitsi Chataika, Yahya El-Lahib & Kudakwashe Dube Index471

xiii

CONTRIBUTORS

Heather Allan identifies herself as a unique-abilities person with a love for life. Heather has spoken at many events about Williams Syndrome. Heather is a co-researcher with the Partnering for Change Research Project, a multi-city, multi-year research project in Ontario, Canada exploring the intersections and pathways through homelessness, education, and employment services for youth labelled with intellectual and developmental disabilities. She hopes to use her sympathetic nature to help other people. Donavon O’Neil Allen  is a former ward of the child welfare system. He is a founding member of the Voyager Project and thinks of himself as the ‘glue’ that bridges the different generations of Voyagers together. He is also a co-researcher with the Partnering for Change Research Project. He is interested in finding solutions to address the complex and multitude of problems facing homeless youth with learning, developmental or mental disabilities. Christine Austin is an advocate for the intimate rights of disabled mothers. In 2002, she received the Cindy Niemi award for her work on disability issues and access to post-­secondary education. Having been interviewed by the media, she has also made numerous presentations on women, disability and abuse. She brought this knowledge to her work as a co-researcher with the Re-imagining Parenting Possibilities Project. She is actively involved in sharing this work through conference and community presentations and forum theatre workshops. Khairani Barokka is a writer, poet and artist, whose work has been presented extensively in 15 countries. She is Modern Poetry in Translation’s Inaugural Poet-in-Residence. Among her honours, she was an NYU Tisch Departmental Fellow and Vermont Studio Center’s first Indonesian writer-in-residence, and is a UNFPA Indonesian Young Leader Driving Social Change for arts practice and research. She is co-editor of Stairs and Whispers: D/deaf and Disabled Poets Write Back (Nine Arches), author-illustrator of Indigenous Species (Tilted Axis), and author of Rope (Nine Arches Press). Recent exhibitions were at SALTS Basel and the ICA in London. She is a PhD candidate in Goldsmiths’ Visual Cultures Department. Maria Berghs is a Lecturer at De Montfort University in the UK. She works in the field of medical anthropology and sociology, specialising in disability studies. Her current research projects are on sickle cell in Sierra Leone and the UK. xiv

Contributors

Pamela Block  is a Professor of Disability Studies, focusing on health promotion, community-­building and capacity-building for autistic and disabled people and groups. She teaches in the doctoral program in Health and Rehabilitation Sciences and is Director of the Graduate Certificate in Disability Studies. Her recent book Occupying Disability is a co-­edited volume exploring concepts of ‘occupying’ and ‘decolonizing‘ disability across the fields of disability studies, anthropology and applied health fields such as occupational ­therapy. She is a former President of the Society for Disability Studies (2009–2010), and a Fellow of the Society for Applied Anthropology. Margaret Campbell’s research examines intersections of disability, gender, and sexuality by exploring the varied ways that people with disabilities experience their gender and sexuality. As an individual who lives with a chronic illness, work and identity often collide as she pursues various research interests such as the sociology of the body, disability studies, and the sociology of gender and sexuality. Margaret has taught courses on the Sociology of Disability at Mount Allison University and the Sociology of Gender at Concordia University. Margaret is currently completing her PhD in Social and Cultural Analysis at Concordia University. Tsitsi Chataika is the Chairperson of the Department of Educational Foundations and also a senior lecturer in disability and inclusive education at the University of Zimbabwe. Her research interests allow her to understand how disability intersects with education, work, gender, culture, religion, childhood studies, development and postcolonialism. Chataika has several publications and her most recent edited book is the ‘The Routledge Handbook of ­Disability in Southern Africa’. She was She has presented at various national and international platforms; and facilitates workshops on inclusive development and inclusive education in Africa; thus promoting inclusive sustainable development with implications for policy and practice. Anna Chowaniec-Rylke is a PhD student of anthropology at the University of Warsaw. Her main areas of interests are rare and genetic disorders, which are the topic of her doctoral thesis. She was an assistant researcher in two projects financed by the Polish National Science Center and her articles were published in Polish anthropological journals. She also wrote a book chapter on children, health and childhood studies. She has presented her work at various international conferences. Sam Cleasby is a writer, blogger and radio presenter from Sheffield and works for disability charity, Scope. She has a chronic illness and a permanent ileostomy and is passionate about raising awareness and supporting disabled people. She is a mum of three teenagers and can be found on her award-winning blog, So Bad Ass Me, breaking the taboos around poo and sharing her experiences of life with an ostomy bag. Stephanie J. Cork received her PhD in Kinesiology (Physical Cultural Studies) from the School of Public Health at the University of Maryland, College Park. Prior to moving to the United States, Stephanie completed her Bachelor’s (Honours) and Master’s in Sociology at Queen’s University in Kingston, Ontario. Her research focuses on diversity, inclusion, equity and justice with a special interest in supporting the disability community within higher education. Stephanie is extremely involved with service and teaching at her current institution and has worked with many campuses entities on large scale projects such as Disability Awareness Month, the Disability Studies Minor, The UMD Disability Summit, and the Student Facilities Fund: Lactation Room Improvement Project. xv

Contributors

Liz Crow is a British disabled woman and long-time activist and artist. She is a doctoral candidate at University of West of England, undertaking practice-led research into methodologies of activism. Liz is also mother to a teenager who has recently become a disabled person. Erin Davenport is a graduate student at UNC-Chapel Hill. She graduated from D ­ avidson College with a B.A. in Political Science in May, where she was Editor-in-chief of the ­Davidson student newspaper, a Leadership Fellow, and a passionate advocate for minority rights on campus and beyond. Erin is interested in the intersections between academia, arts, and activism, which she explored through an installation art project, Rainclamation. The project allowed Erin to travel and present at many conferences, including two in Europe, and caused her to realize a passion for sociology, which she is now pursuing in graduate school. Pragya Deora  is a 2018 Batch Indian Information Service Officer currently undergoing training. She did Bachelor of Commerce from University of Delhi and M. A. and MPhil in Sociology from Jawaharlal Nehru University. She has worked and delivered talks on a range of issues confronting persons with disabilities. She has been a part of organising team of various conferences on disability. She was also the first woman convenor of JNU Visually Challenged Students’ Forum. Pragya was a part of Anubhav Lecture Series organised by the Harris School of Public Policy at University of Chicago for capacity development of individuals working at grassroots in India. Social entrepreneurship is one of Pragya’s key interests and she believes in finding sustainable solutions to social problems. Beth Douthirt-Cohen is currently the Executive Director of Diversity, Equity and Inclusion at Frederick Community College, where she leads and supports efforts to strengthen inclusion throughout the College. Previously, she was the Deputy Chief Diversity Officer at the University of Maryland (UMD) where she directed various prejudice reduction efforts and educational initiatives to further social justice, including UMD’s Intergroup Dialogue programme. A person with a disability, Beth is part of the Calico Hill Collective, a group of social justice educators seeking to further racial, disability, gender, LGBTQIA, class, religious, and immigrant justice, healing and processes of truth and reconciliation across all dimensions and intersections of oppression. Beth has her undergraduate degree in from Barnard College of Columbia University, her M.Ed. from Harvard University, and her PhD from UMD. Kudakwashe Dube is the Chief Executive Officer (CEO) of the Africa Disability Alliance and has over 30 years of experience designing, managing, evaluating and monitoring development and disability programmes with international and grassroots movements. He is also chair of trustees of ADD International that fights for independence, equality and opportunities for disabled people living in poverty, alongside organisations of disabled people. Nqobani Dube  has a Master of Arts in development and human rights from Swansea ­ niversity. His thesis focused on land reforms and livelihoods of people with disabilities in U Africa. In the past 12 years, he has extensively worked in different roles around southern Africa for various disability organisations and the Government of Zimbabwe. This strengthened further his research and work, which revolves around the intersections of disability inclusion with development and humanitarian interventions. Nqobani remains interested in representations of disability rights activism in popular culture and radical pedagogy. xvi

Contributors

Kareem Elbard works in various capacities, promoting awareness about disability and intimacy issues and supporting others labelled/with intellectual disabilities. He presented at an international conference on Disability and Diversity in Rome (2008). His presentation highlighted how supports, societal and institutional discrimination, form his possibilities as a disabled man in relation to employment, intimacy and health. As a co-researcher with the Re-imagining Parenting Possibilities Project, he interviewed key informants and people with lived experience of parenting and intimacy stories to share across Ontario; and participated in the development of forum theatre scenes as a means of sharing lessons learnt. Willem Elbers is senior research fellow at the African Studies Centre at Leiden University (Netherlands) since 2015, where he heads two research projects on advocacy in the global South. While one of these projects examines advocacy strategies targeting the rights of children with disabilities in Sierra Leone, Cameroon and Zambia, the other focuses on the role of international agencies in enabling and constraining local advocacy on the ground. Willen is also the coordinator of the Advanced Master in International Development, a post-­ graduate programme seeking to enable excellent MA-graduates to pursue a career in the field of international development. Yahya El-Lahib is an assistant professor at Calgary University in Canada. As a disability activist, Yahya’s research, practice and policy background is centred on working on disability issues at all levels of intervention; from frontline work with individuals and families, to community practice, policy development, and research on a variety of issues. These include education, employment, poverty, political and civic engagement, and the impact of war. Yahya is closely affiliated with the disability movement in Lebanon, working from a grassroots social justice approach, which has informed his community involvement, teaching and research in Canada, a critical transnational dimension to social work. Emma Frobisher  is a Junior Researcher and a doctoral fellow at the African Studies Centre at Leiden University. She holds a Master’s degree in Development, with a major in ­Social Policy for Development, from the International Institute of Social Studies of Erasmus ­University Rotterdam, from where she graduated in December 2016. She has also worked in various NGO roles in the UK, Peru and Malaysia. Ann Fudge Schormans is an Associate Professor in the School of Social Work at M ­ cMaster University (Ontario, Canada). She was a practicing social work for many years, working with people with intellectual disabilities in the Community Living and Child Welfare sectors. This practice background, combined with ongoing activist work and her experiences parenting her daughters with intellectual disabilities influence her teaching and research. She uses inclusive, co-researcher methodologies in her research work, along with arts-informed methods (such as forum theatre, documentary film-making, photography, and mapping). Much of this research has focused on issues that co-researchers with intellectual disabilities who have worked with her have identified as needing attention. Marco Antonio Gavério is a social scientist, sociologist, and Ph.D. student at the ­Graduate Program in Sociology, at the Federal University of São Carlos in São Carlos, Brazil. ­Researcher of the SexEnt: Body, Sexuality and Entertainment, at UFSCar. Gaverio’s studies was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES). xvii

Contributors

Rasa Geniene  is a PhD Candidate of the Social Work and Social Welfare Department, ­Faculty of Philosophy, Vilnius University, focusing on the deinstitutionalisation of ­residential care and the development of community-based services for people with mental/­intellectual disabilities. Before, she worked for a non-governmental organisation, which i­nitiated ­piloting and development of good practices of community service models. Currently, Rasa is working in the Ministry of Social Security and Labor of the Republic of Lithuania, where she explores and operates the issues of transition from institutional care to family and ­community services for people with disabilities which has a direct link with her dissertation. Violeta Gevorgieniene is Associate Professor in the Department of Social Work and Social Welfare, Faculty of Philosophy, Vilnius University since 2000. She has a background of educational sciences and social work and is an expert on disability issues. In 2009, she was elected as the member of the Executive Committee of the European Association of Schools of Social Work and served in this position up to 2017. She has authored over 20 ­scientific publications and learning materials for persons with disabilities. Her research ­interests also include competences of social work, social work education, socio-cultural identity and migration. Melissa Graham is the founder and one of the key organizers for the Toronto Disability Pride March. Melissa is a social worker and community activist involved in disability issues throughout Ontario, including her position as Vice-President of Citizens with Disabilities Ontario. She is also a recipient of an Ontario Volunteer Service Award for 2018. She has previously written about disability issues in national publications such as The Monitor and Our Times Magazine, as well as on her blog, ‘Sit Down, Fight Back’. Nathan Gray is a member of the Voyager project, which aims to improve the e­ ducational attainment of crown wards by encouraging young people in care to pursue their educational aspiration. He was also involved in directing a peer mentoring video. He is a rhythm and blues (RnB) singer. He is a co-researcher with the Partnering for Change Research ­Project. He  hopes the knowledge generated from this research on the systemic barriers faced by homeless young people with learning, developmental or mental disabilities will reach a wider audience and inform change in policy and practices that serve this population. Maria Grazia Gargiulo is Ph.D. in Environmental Education and Sustainable ­Development and Expert in Disability Pedagogy and Social Model of Disability at the Suor Orsola ­Benincasa University of Naples in Italy. Miro Griffiths has a PhD and teaches at the University of Leeds, he is active within disability rights and is a member of various local, national and international advisory boards, including In Control, British Council and the European Network on Independent Living. His particular interests are: the concept of Independent Living, community development and youth participation in decision-making processes. Anahi Guedes de Mello  is a social scientist, anthropologist, and Ph.D. student at the Graduate Program in Social Anthropology, at the Federal University of Santa Catarina (UFSC), in Florianópolis, Brazil. She is a researcher of the Nucleus of Gender Identities and ­Subjectivities, at the UFSC’s Department of Anthropology, and of the Nucleus of Disability Studies, at the UFSC’s Department of Psychology. She is also an associate researcher at Anis – Institute of Bioethics, in Brasília, Brazil. xviii

Contributors

Damian Haslett is a Doctoral Researcher at Durham University, UK. His ­research focuses on the intersection of disability rights and disability sport. Damian is a full member of the Division of Sport, Exercise and Performance Psychology in the Psychological Society of Ireland, and he serves on executive committee of Irish Wheelchair Association Sport. Kevin John Head  is a self-advocate who recognises the importance of educating non-­ disabled people in order to work towards change. As a co-researcher with the My Life in the City Research Project, an arts- and technology-informed qualitative study looking at of how people labelled/with intellectual disabilities use and give meaning to their experiences of public city space, Kevin is very involved in sharing information about the research with a variety of audiences, in many different ways. He is particularly proud of the documentary the co-researchers have made, and is now actively involved in the creation of the project website. Tyler Henderson  is a co-researcher with the Partnering for Change Research Project. He is an active member on many Hamilton (Canada) Councils. He actively engages in public speaking and workshops for youth audiences. Having faced adversity in his own life around issues of mental health and addiction, he is committed to supporting other youth in similar situations and give back to the community. To fulfill this commitment, he recently started in a Bachelor of Social Work programme. Sylette Henry-Buckmire  has a PhD in Health and Rehabilitation Sciences, Disability Studies track from Stony Brook University. Her study is a feminist, ethnographic practice that takes a historicised look at disability formation, and is committed to disability, mobility and occupational justice. It creates a space to discover a deeper, more textured understanding of how people move and occupy with physical disabilities. Sylette’s research interests include disability studies, mobilities studies, occupational therapy, Caribbean studies, and feminist, postcolonial, and critical race theory. Kelly M. Hoffman  is a doctoral candidate at the College of Information Studies at the ­University of Maryland. She earned an M.L.S. from the University of Maryland in 2007 and worked as a systems librarian and knowledge manager before returning. Her research interests include algorithmic literacy information personalization. Kelly’s thesis focuses on public librarians’ awareness and perceptions of the role algorithms play in information access. She has helped coordinate several conferences that bring together researchers, practitioners, and communities around issues of common interest. Karrissa Horan-LaRoche  is a co-researcher with the Partnering for Change Research Project. She is currently on the Social Planning Research Council Street Youth Planning ­Collaborative Youth Leader’s Committee (Hamilton, Canada) whose goal is to improve the system that supports homeless youth. She is also working with a team of individuals to identify barriers in access to services that help youth find employment and find solutions to break down those barriers. She enjoys helping people and wants to enable equal opportunities for all people. Her future goal is to become a Child and Youth Worker in residential housing. Rainbow Hunt is recognised as a trans-activist and a person labeled/with an intellectual disability working to help bring awareness to the discrimination and isolation that trans and disabled people face. Rainbow is an experienced co-researcher with the Re-imagining xix

Contributors

and disabled people face. Rainbow is an experienced co-researcher with the Re-imagining Parenting Possibilities Project presenting in conferences, academic settings and to community organizations. Rainbow draws on personal experiences of intimacy and intimacy rights in her work as a peer facilitator, delivering workshops across southern Ontario on sexuality and disability. She coordinates events for isolated youths to network and learn about community resources. Paul T. Jaeger is Professor, Diversity & Inclusion Officer, and Director of the Master of Library and Information Science programme of the College of Information Studies, as well as Co-Director of the Information Policy and Access Center at the University of Maryland. He is the author of more than one hundred and eighty journal articles and book chapters, along with seventeen books. Paul’s research has been funded by the Institute of Museum & Library Services, the National Science Foundation, the American Library Association, the Smithsonian Institute, and the Bill & Melinda Gates Foundation, among others. Charlotte Jones  is a Postdoctoral Research Fellow at the University of Exeter’s Wellcome Centre for Cultures and Environments of Health. Her work responds to conversations within feminist theory, queer theory and critical disability studies. She was awarded her doctorate on intersex people’s experiences of relationships, intimacy and prejudice by the Department of Sociological Studies, University of Sheffield in 2017. Charlotte previously worked on sexual violence and disclosure in Higher Education settings, community activism and advocacy for HIV pre-exposure prophylaxis, and as Research Fellow on Around the Toilet, a project about the public toilet as a location of exclusion and belonging for queer, trans and disabled people. Gill Kemp’s career has spanned education, law and the media. She has been involved with various charities and campaigns and is the founder of Public Toilets UK. She is also a cofounder of the Toilet Consortium UK. While giving evidence on the effects of public toilets closures to Government committees, Gill also worked with various official organisations to produce booklets on topics such as reducing vandalism in toilets and access to facilities for lorry drivers. She has also written handouts on health issues that affect UK lorry drivers. Gill has several publications she was a participant in the innovative Around the Toilet project based in Sheffield. Rados Keravica  is working for the United Nations Human Rights Team in Serbia as a human rights project associate, where he coordinates the joint United Nations project on the rights of persons with disabilities, autonomy, voice and participation of persons with disabilities in Serbia with the focus on legal capacity regime reform, empowerment of women and girls with disabilities and development of innovative models of employment of persons with disabilities. From 2011–2016, he worked for Disability Rights Promotion International as a Regional Officer for Europe. He is a Board Member of the European Network on Independent Living (ENIL) and the President of the ENIL Youth Network. Brian LeBlanc grew up in New Orleans, LA and has lived in the Gulf Coast area since then. He found his niche in the professional world as a Marketing and Public Relations Executive. All that changed in October of 2014 when he was diagnosed with Early-Onset Alzheimer’s Disease. He made a career by using his voice, he knew what he HAD to do… so he talked about it. He now spends his time as an International Alzheimer’s advocate, xx

Contributors

keynote speaker and session presenter at inter/national and local conferences, seminars and workshops. He is also a Crisis Intervention Team Trainer for Law Enforcement. Lars Lindberg is an activist in the Swedish disability movement and an independent consultant. His work centres on human rights, disability policy and activism. Lars Lindberg is former Deputy Director at the Ministry of Health and Social Affairs in Sweden and worked with Disability Policy Coordination in the Government Office. Eleanor Lisney is a campaigner, founder member, public speaker and director of Sisters of Frida, a disabled women’s collective. She is an access advisor, an aspiring creative practitioner and co-founder/ director of Culture Access CIC, which is about supporting access (including to toilets and transport), bringing an inclusive edge intersectionally. Fabrizio Loce-Mandes has a PhD in social anthropology. He has carried out long-term ethnographic fieldwork related to deafness in multiple social spaces, including associations, state institutions, and hospitals, as well as research related to cochlear implants. Currently, he is coordinator of the project MUSAE – Musei, Uso Sociale e Accessibilità, per contrastare l’Emarginazione (Museums, social use and accessibility, to contrast marginalization). The project is co-founded by Fondazione Cassa di Risparmio di Perugia (Dec 2018–Nov 2020), under the Insieme per un Welfare di Comunità grants. Rex Marchi  has a job which he enjoys. He will have a pension when he retires which he is very happy about. Rex has been an active co-researcher with the My Life in the City ­Research Project. The project is important to Rex because it has created opportunities for him to ­connect with other people and to make new friends. He contributed to the project by ­sharing his experiences, helping to create the project’s artwork, and interviewing people during the making of the project documentary. Alan Santinele Martino is a Ph.D. candidate in the Department of Sociology at McMaster University. Alan’s main areas of interest include critical disability studies, gender, sexualities, contemporary social theory, and qualitative research methods. His dissertation examines the romantic and sexual experiences of adults with intellectual disabilities in Ontario and his ‘relationship to disability’ comes in the shape of being a loyal and loving brother of a young man with a developmental disability. Alan has been working closely with community organizations and self-­ advocacy groups for over a decade and is deeply committed to continuing these collaborations. Abraham Mateta is a lawyer by training and a disability rights activist by calling. He holds among other qualifications, a Bachelor of Law from the University of Zimbabwe and a Masters in International and European Human Rights from the University of Leeds. Mateta has worked in government and the civic society and currently, he is into private practice. He works with various organisations engaging in disability. Mateta is currently the Secretary for the Lawyers with Disabilities Association Zimbabwe Trust, which seeks to advance the rights of disabled lawyers and the rights of all disabled people to get access to justice. Donna McCormick has been a self-advocate for many years and actively involved in disability activism for people labeled intellectually disabled. She is a founding member of The PhotoChangers, a co-researcher group facilitated by Ann Fudge Schormans. As such, Donna has been involved in numerous presentations, exhibits and guest lectures of the group’s two xxi

Contributors

projects: the first being a critical engagement with public photographic images of people labeled/with intellectual disabilities, the second a photo project exploring issues of importance to people labeled with intellectual disabilities, including intimate citizenship, parenting, belonging, and employment. Hannah McGlade holds qualifications in law and human rights. She is the author of ‘Our Greatest Challenge, Aboriginal children and Human Rights’ and recipient of the Stanner award. In 2016, she was appointed the Senior Indigenous Fellow of the United Nations Office of the High Commissioner for Human Rights and the Senior Indigenous Research Fellow at Curtin University. A member of the Noongar community, she is a prominent Australian Indigenous human rights and social justice advocate. Denise McKenna has used mental health services for over 25 years and has been a mental health campaigner for most of this time. She has been involved with Mad Pride, co-founded Mental Health Resistance Network (MHRN) and Four in Ten (an LGBT mental health project), is part of Disabled People Against Cuts (DPAC) and has taken part in direct actions with DPAC and MHRN. She instigated a judicial review against the DWP and has spoken at a wide range of events. She is an artist and art historian. Wendy Merchant is a British mother-activist, researcher and nurse whose interests include parenting, disability and interactions with health, education and social care professionals. She has worked on various research projects including the ‘Getting Things Changed’ project at the Norah Fry Centre for Disability Studies at the University of Bristol and her own auto-­ ethnographic research ‘Caring for disabled children in hospital: Mothers and nurses experiences’ at the University of the West of England, Bristol. Wendy’s experience of activism involves working alongside other mothers, actively contesting the othering of our ‘disabled’ children, whilst actively resisting those forces that seek to define children less as than human beings. Peter Mittler was a clinical psychologist and Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963–1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968–1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991–1995). Currently, he is Honorary Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester. Rich Moth is a Senior Lecturer in Social Work in the School of Social Sciences, Liverpool Hope University, UK. Before moving into social work education he worked for 15 years in various roles in the social care sector including as a mental health social worker. He has worked alongside activists from the survivor and disabled people’s movements as an ally in a number of mental health, welfare and anti-austerity campaigns. He is a longstanding member of the national steering committee of the Social Work Action Network and an active trade unionist. Martin Musengi is Associate Professor of Deaf, Special Needs and Inclusive Education at Great Zimbabwe University (for the last 14 years), where he was Chairperson of the Jairos Jiri Centre for Special Needs Education from 2015 to 2018. He is currently the Director of Quality Assurance and Academic Planning. He taught in a special school for the deaf for 15 xxii

Contributors

years. He is a keen supporter of disability rights and has published 22 empirical studies in the field of Deaf Education and Zimbabwean Sign Language and has authored 16 book chapters and two books. Auma Okwany  teaches Social Policy for Development at the International Institute of Social Studies of Erasmus University Rotterdam in the Netherlands (ISS-EUR). Her teaching and research interests centre on the relationship between policy, practice and theory for children, girlhood studies, youth and their families in contexts of risk and marginalisation. She is the Lead researcher for Tanzania on the Oak Foundation-funded two-year research project; ‘Adolescent Perceptions on Healthy Relationships in Tanzania and Bulgaria.’ She is also the Overall Director of the four-year Netherlands Government funded EUR-ISS project, ‘Strengthening Education and Training capacity in Sexual and Reproductive Health and Rights in Uganda.’ Nagase Osamu is Eminent Research Professor at the Institute of Ars Vivendi, Ritsumeikan University, Kyoto, Japan, and is a disability studies scholar. His current activities include chair, membership committee and Officer of Inclusion International, of which he is a life member, vice-chair of the CRPD Committee of Japan Disability Forum, which is a national umbrella organization of/for person with disabilities in Japan, inaugural board member of Japan Association for Disability Law and an editor of ‘Disability & Society‘. Nagase was one of those who publicly appealed for an official apology and compensation of eugenic sterilisations in December 2002. Carmela Pacelli graduated in Educational Sciences and Primary Education Sciences and is responsible for the University Service for the activities of students with disabilities (SAAD) at the University of Suor Orsola Benincasa in Naples Italy and a coordinator of the Naples in The Hands Network. Paula Peters is a disability rights activist with Disabled People Against Cuts (DPAC) and member of Mental Health Resistance Network (MHRN) in the UK. She is also chair of Bromley and Croydon Unite Community trade union branch and a member of the ­Labour Party. Paula is a photographer who has extensively documented resistance against the ­Conservative government mounted by the mental health survivor and disability rights ­movement. She is also a poet and writer. Romeo Dontae Tresean Biggz Pierre’s passion is for the performing arts and trans-­activism. He has co-presented and co-produced work in national and international ­contexts. He has written and performed his own music at Pride and numerous arts and music festivals. He uses his experiences of growing up with an intellectual disability and being a trans man to inform his activism. Romeo brought his storytelling skills to his work as a co-researcher with the Re-imag­ sing a co-­researcher model that exining Parenting Possibilities Project, an Ontario-wide project u plores the parenting experiences and aspirations of people labeled/with intellectual disabilities. Paula Campos Pinto  is an Associate Professor at the School for Social and Political ­Sciences/ University of Lisbon, and a researcher at the Center of Administration and Public Policies and the Interdisciplinary Center on Gender Research. Since 2013 she coordinates the Observatory on Disability and Human Rights, a platform that brings together academics, ­d isability organizations and decision-makers to support disability research in Portugal. xxiii

Contributors

Member of ANED, an academic network of experts who conduct analyses of public policies affecting persons with disabilities at EU level, and research associate with Disability Rights Promotion International, a worldwide initiative to monitor disability rights. Ciro Pizzo is Researcher at University of Naples ‘Suor Orsola Benincasa’, where he teaches Sociology and Social Models of Disability. He’s co-Director of the DIE – Groupe de ­recherche/ Laboratoire des terrains vagues au sujet de Désaffiliation, Incertitude, Exclusion and Member of the Executive Comittee of the CeRC ‘Centre for Governmentality and Disability Studies “Robert Castel” of Naples’ – ANED Centre for Italy. He’s member of the Editorial Board of Minority Reports and Cultural Disability Studies. John Rae was a board member of many human and disability rights organizations, including Co-chair of the Coalition on Human Rights for the Handicapped, which secured the first human rights coverage for persons with disabilities in Ontario. John is a Past President of the Alliance for Equality of Blind Canadians, the Canadian Legal, Advocacy, Information and Research Association of the Disabled and PAL Reading Service. He is currently a member of the Council of Canadians with Disabilities National Council, Chair of its S­ ocial ­Policy Committee, and a member of its Human Rights and National Accessibility and ­Inclusion Act Committees. Sarah Rennie  is an accessibility and inclusion specialist, equality trainer and reformed solicitor. Her particular areas of interest are transport and toilets. She is a steering group member of Sisters of Frida CIC and former President of the Access Association. Sarah lives in Birmingham with no children or dogs. Marcia Rioux is a Distinguished Research Professor in the School of Health Policy and Management and teaches Critical Disability Studies, Health Policy and Equity at York ­University in Toronto, Canada. She is the Director and PI of Disability Rights Promotion International, a multi-year group of projects to monitor disability rights (including employment rights, indigenous rights, socio-political rights) nationally and internationally. She has recently developed Indicators under the CRPD and the SDGs that recognise the importance of the input of grassroots voices in the way we measure progressive realisation. She has been a member of the Order of Canada since 2014. Sean Rowley  has been a self-advocate for many years and actively involved in disability activism. He is a member of The PhotoChangers, a self-advocate research group facilitated by Fudge Schormans. This group’s most recent work uses photography to explore issues of intimate citizenship – Sean brought this knowledge to his work with the Making Space for Intimate Citizenship Project. Sean is also a co-researcher on the My Life in the City Research Project, and was involved in filming the project’s documentary, a documentary developed by the co-researchers with support from a film crew. Tafadzwa Rugoho is a PhD candidate in Department of Sociology at the University of Kwa Zulu Natal in South Africa. He has chapters in two forthcoming books ‘Disability and media: An African perspective’ and ‘Teaching Sexual and Reproductive Health to Adolescence with Disabilities’. Joanne Sansome holds a Masters in Social Research Methods. She is a researcher and ac­ orthern Ireland. In Northern Ireland and the broader tivist with a physical disability from N xxiv

Contributors

U.K, Joanne has worked with government and non-­governmental organisations, universities, and within organisations of disabled p­ eople to create awareness of and further the understanding of disability rights. Joanne has significantly shaped the concept, research and delivery of service user and carer involvement within social work education and is an active member of the Northern Ireland Social Care Council Participation Group and, recently, the Disability Research on Independent Living and Learning National Advisory group of Northern Ireland. Marie Sépulchre  is a researcher at the Department of Sociology of Uppsala University, Sweden. Her research interests centre on citizenship, disability, activism and structural inequalities. Marie’s work has been published in international peer-reviewed journals such as Alter - European Journal of Disability Research, the Scandinavian Journal of Disability Research, Disability and Rehabilitation, and Disability and Society. She recently completed her PhD at Uppsala University, with a dissertation entitled: This is not Citizenship: Analysing the Claims of Disability Activists in Sweden. Samantha Sibanda has eight of experience as a disability activist. She is the Founder of Signs of Hope Trust, Zimbabwe, which empowers and advocates for the rights of people with disabilities. She believes in the interdependency of society and that in our diversity, we bring different solutions to development in any area. Her work promotes empowering and self-representation of people with disabilities so that they contribute to decision making. Samantha also coordinates an inclusive Zimbabwean online magazine, ‘Hope Magazine’. She is currently studying special education, with the hope of contributing to the inclusion of children with disabilities in education. Jen Slater  works as a Reader in Disability Studies and Education at Sheffield Hallam ­University, UK. Her research focuses on issues of disability, gender and the body. She is also interested in critical explorations of developmental discourse and issues of access/­accessibility. Jen’s PhD research used critical disability studies perspectives to explore meanings that we attach to ‘youth’ and ‘adulthood’. From 2015–2018, she led a series of AHRC-funded ­arts-based projects collectively known as Around the Toilet. Brett Smith  is a Professor at Durham University, UK. Working with organisations like Disability Rights UK and Aspire, his research focuses on disability, sport and physical activity. Brett serves on seven journal editorial boards (e.g. Disability and Society), is Associate Editor for two journals, and is the President of the International Society for Qualitative Research in Sport and Exercise. Armineh Soorenian is an independent researcher and her research interests include inclusive education, disability arts and representations, disability and gender, and disability hate crime. Her book ‘Disabled International Students in British Higher Education: Experiences and Expectations’ was published by Sense Publishing House in 2013. Soorenian also has published articles in several international journals and has contributed to several collected edition books as well as various United Nations initiatives. In May 2018, Soorenian was recruited by the Alliance for Inclusive Education to lead a project on the effectiveness of schools’ Accessibility Plans funded by the Disability Research on Independent Living and Learning grants programme.

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Contributors

Natalie Spagnuolo  is a doctoral candidate at York University, Toronto. Her SSHRCfunded research explores medical decision-making and knowledge production, and the role of economic factors in these processes. She is managing editor for a critical disability ­studies journal and for an open-access peer-review journal that supports interdisciplinary approaches to health from social justice perspectives. She has published numerous articles and book chapters on disability and migration, intellectual disability, and the theory and practice of disability research. Mo Stewart is a former healthcare professional, a disabled veteran of the Women’s Royal Air Force medical branch; and an independent disability studies researcher since December 2008. Her research exposed the American corporate influence with UK social policies since 1992, the assessment model adopted by the Department for Work and Pensions (DWP) to assess claimants of long-term sickness and disability benefit as being fatally flawed, and the influence of a former DWP Chief Medical Officer, with future welfare reforms when funded by the same American corporate insurance giant; who had influenced the DWP in the longheld plan to demolish the UK welfare state in favour of private healthcare insurance. Amanda Strausser is a current staff member at the University of Maryland, College Park. She is a vocal advocate for the disability community, using her own experiences within higher education to mentor and support others who are pursuing their degrees. Her research focuses on health literacy and looks to establish more effective advocacy networks for those with visible and invisible disabilities within the American health care system. Amanda is one of the founding members of the UMD Disability Summit; but also works with many units across the campus to help promote programming that is both inclusive and accessible for all. Egle Sumskiene is Associate Professor, Head of the Social Work and Social Welfare Department, Faculty of Philosophy, Vilnius University. She is a social worker, sociologist and expert on disability, mental health and human rights issues. As an expert she was involved in various international and national projects focusing on such areas as human rights and disability, discrimination, mental health care, policy, social integration of people with psychosocial disabilities. She is editor of one monograph and author of over 20 scientific publications covering issues of human rights, disability and mental health. Krishna Bahadur Sunar is a youthful disability rights advocate from Dalit community of Nepal who has a lived experienced of double tires of discrimination and exclusion. Krishna has been advocating for disability rights and inclusion for more than a decade, associating with different likeminded social organisations. He is a second generation leader of Nepali disability rights movement, who has been initiating a critical discourse on disability from academic perspective. Having completed a Master Degree in International Cooperation and Development, he is also a development professional with an expertise on disability, ­human rights and inclusive development. Krishna is currently the Secretary of the National ­A ssociation of the Physical Disabled-Nepal. Kate Swaffer  is a humanitarian, disability rights activist, author and speaker. She is the 2018 Global Leader in the 100 Women of Influence in Australia, and was the 2017 Australian of the year in South Australia. Kate is also the Chair, Chief Executive Officer and one of eight co-founders of Dementia Alliance International, a global advocacy and support xxvi

Contributors

group for people living with dementia, having been diagnosed at the age of 49. Kate is also a full member of the World Dementia Council, and a Board member of Alzheimer’s ­d isease ­International. She sits on several national and international Steering committees and ­Advisory groups, including the United Nations High Level Meeting Steering Committee. Jose Viera has more than 15 years of experience working nationally and internationally in the field of human rights. As a person with a disability, he has a personal commitment to improving the lives of persons with disabilities and advocating for their human rights. Currently, he is the World Blind Union CEO, which has an international membership with 235 organisations at the sub-national and regional levels and in over 190 countries. Also, he is a professor in the department of International Relations at Silo 21 University in Argentina, and the President of the Federation of the Blind of Argentina. Dagnachew Wakene  holds a Bachelor of Law (Addis Ababa University, Ethiopia) and MPhil, majoring in Rehabilitation and Development Studies (Stellenbosch University, South Africa). He is currently pursuing doctoral studies at the Institute for International and Comparative Law in Africa (University of Pretoria), focusing on violence against persons with disabilities. He is also the Regional Director of Programmes for the Africa Disability Alliance. Before then, he worked as Regional Coordinator for Africa at the Disability Rights Promotion International, a global research project on establishing a holistic, participatory system of monitoring disability rights violation. A childhood polio-survivor, Dagnachew embraces a blend of lived experience, academic and professional rigour in disability rights.

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ACKNOWLEDGEMENTS

This product is a collective effort from all the contributors, who endured deadlines and pushed the boundaries of their own practice. We are glad that they shared their work on disability activism spread across continents. It is our hope that the disability activism struggle continues until all disabled people across the world enjoy their rights just like any citizen. We are also very much indebted to all the reviewers, who are too many to mention, for meticulously reviewing the individual chapters in this handbook. This book is what it is because of them. We are also grateful to the publishers for giving us the opportunity to publish this e­ dited collection. We also extend our gratitude to all the technical experts provided by the publisher, who guided and supported us to ensure that this project came to a fulfilling completion. While putting this handbook together, our families and friends were very supportive and their unwavering encouragement gave us the energy to keep on going up to the end. We extend our heartfelt and special thanks to them all.

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PART I

Introduction – contextualising disability activism

INTRODUCING DISABILITY ACTIVISM Maria Berghs, Tsitsi Chataika, Kudakwashe Dube and Yahya El-Lahib

Introduction The onslaught of neoliberalism, austerity measures and cuts, impact of climate change, ­protracted conflicts and ongoing refugee crisis, rise of far right and populist movements have all negatively impacted on disability. These circumstances have created more impairment and deaths in the global South and North. At the same time, we are witnessing the watering down of many rights, legal entitlements and policies that sustained disability lives. This includes the ability and willingness of academia, non-governmental organisations, multinationals and institutions to get involved in fighting back politically, economically, culturally and socially to ensure change. Yet, disabled people and their allies are fighting back and we urgently need to understand how, where and what they are doing, what they feel are their ­challenges and their future needs. We are living through ‘activist’ times with differing formal and informal expressions of what activism looks like from individual actions, artistic movements, mass protest marches, hashtag activism (e.g. #ArabSpring, #BlackLivesMatter, #JeSuisCharlie, #MeToo movement, #ThisFlag), consumer activism, climate activism, peace activism; to ensure collective institutional, legislative or political change (Shirky, 2008). These campaigns are viewed as more inclusive, democratic, ‘liquid’ and horizontal in nature, in that anyone can join (Tufecki, 2017; Gerbuado, 2018). With the impact of social media, boundaries between public and private life collapse. The personal now can become political and part of public discourses, as well as imagery, and experienced as individually empowering. Public spaces become ‘occupied’ and appropriated for direct action, political slogans of resistance and mass protests (Gerbuado, 2018). Most activists now use technology, such as mobile phones and the Internet, as well as email, photographs, videos, podcasts, crowdfunding and blogs, making it accessible to a wider global audience. Much of the physical and emotional labour of activism and advocacy, in terms of writing letters or calling, recruiting new members, ensuring funding, thinking of campaign slogans and planning innovative actions and tactics for attention, has thus profoundly altered with this new media landscape (Shirky, 2008; Tufecki, 2017). At the same time, there have been criticisms of this ‘new activism’, with some despairingly calling it mainly ‘online’, ‘cyber’ or ‘digital’ activism, ‘clicktivism’, or ‘slacktivism’ (Karpf, 2010; McCaughey & Ayers, 2013). 3

Berghs, Chataika, K. Dube & El-Lahib

While the new activism seems to fit ideas of social movements in terms of collective m ­ essage, vision and shared ideas for change, often popular appeal, quantitative impact or even online vitality of a campaign, has not always translated to effecting real change, especially in ­neoliberal times (Tufecki, 2017). Despite mass appeals of transnational movements, software platforms (i.e. Facebook, ­Twitter, WhatsApp, Telegram, Instagram) and international non-profit organisations ­focusing on whistling blowing (i.e. WikiLeaks), this has led to very little structural political change, particularly in dictatorial countries (Tarrrow, 2005; Gerbuado, 2018). Moreover, overt individual direct political dissent in undemocratic countries, activism that threatens international economic powers or whistle-blowing globally, is fraught with dangers and often ensures that certain types of (hack)activism have to go underground (Lindgren & ­Lundström, 2011). A kind of hierarchy emerges in how the risks and rewards of legal and illegal, as well as overt and covert activism are understood. Increasingly, we are also seeing the rise of not only more politically conservative types of activism; but also openly violent, ­fascist, racist, homophobic and populist activism alongside neoliberal ‘extractivist’ activism for private economic gain or terror and conflict, which goes unregulated and unpunished. Much of the new activism, especially online, seems to be done from positions of technological comfort, digital, political and economic algorithmic power as well as language privilege, which is rarely acknowledged. Tufecki (2017, p. xi) argues that we are witnessing a shift in how social movements ‘operate’ and how they are opposed due to ‘technological affordances’. These ‘technological affordances’ also come with real technological, physical and emotive risks, in terms of loss of privacy and need of new technological skillsets to protect oneself in the real and virtual world. Criticisms have also been directed at much of the online policing in terms of language and terminology that is being used, noting that this is undemocratic, encourages censure and is counter to freedom of expression. It also entails that activism is not setting agendas; but one of disagreement, dissent and resistance as well as encouraging ‘self-censure’ for personal preservation in public spaces and the creation of ‘echo-chambers’. In the United States of America (USA), critics argue that cyber activism through the use of online marketing and algorithms for the political right, has contributed to division, ‘shock-politics’ and ‘posttruth’ acceptance (see Klein, 2017). Concerns have been raised about the proliferation of ‘big data’ and how inequalities have gradually become automated in institutions. Conversely, they have real consequences for poor people in terms of employment, insurance, mortgages, justice and healthcare (O’Neil, 2017; Eubanks, 2018). The trajectories of new activism have also been criticised as being neo-colonial, racist and mostly from North to South with very little cultural sensitivity and local expertise, as exemplified by the Kony 2012 video campaign cited in Cole (2012). Furthermore, questions have been raised about links to consumerism, identity politics and lack of transparency about who really benefits from the work of activism and branding of oneself as a particular type of ‘activist’ (Chataika et al., 2015). It almost seems as if it has become ‘trendy’ to proclaim oneself as an ‘activist’ in terms of neoliberal identity management, possible access to resources and moral branding or virtue signalling. Activism has become another commodity to buy into, in terms of neoliberalism, thus blurring the boundaries between consumerism, humanitarianism and resistance (Mukherjee & Banet-Weiser, 2012; De Waal, 2015). What is missing from many of the above criticisms and analysis of new forms and impetus of activism is ‘disability’ (Soldatic & Johnson, 2019). This is a grave concern, particularly when we are living in what some have defined as ‘Crip Times’ or neoliberal austerity that

4

Introducing disability activism

particularly affects and creates disability (McRuer, 2018). Accordingly, this makes manifestos for disability justice and activism urgent (Ellis et al., 2018). In the newer forms of disability activism, the focus on the everyday and people behind the hashtags or understanding the individual and collective motivations for participating in particular protests has been missing. While everyone is involved in new forms of activism – from local to global (this is inclusive of age, ethnicity, gender, socio-economic class and so on), disability theory, people with impairments, illness and chronic conditions, as well as different forms of new activisms, have been neglected. This could be because disability activism is often misunderstood or relegated to those disability rights activists with active social media profiles, academic careers, international contacts or involvement in Non-Governmental Organisations (NGOs) (Soldatic & Johnson, 2019). More so, the work of those who write profusely in the English language is easily accessed by large human rights organisations in the global North and South (Chataika et al., 2015). Disability activism is also incorrectly viewed as only about disability ‘rights’ or with ­inadequate cross-cultural or interdisciplinary reach. It is often erroneously seen as something ‘special’ or ‘different’, with limited political or human rights impact that only those with a ‘disability’ identity can do. However, there is often no nuanced understanding of what ‘disability issues’ involve. We have nonetheless seen a surge of disability advocacy, activism, campaigning and research on activism, from confrontational protests and symbolic direct action in Bolivia for pensions (Brégain, 2016; Vásquez Encalada, 2019), a mother advocating for justice for her disabled child in the United Kingdom (UK) (Ryan, 2017), the Sins Invalid1 performance project on disability and sexuality, the African Network on Evidence to Action on Disability (AfriNEAD) (Mji et al., 2011), to the start of a disability movement and advocacy on disability issues in China (Zhang, 2017) and its intersectionality to other movements like #MeToo (Lin & Yang, 2019). All these different forms of activism have been infused with a renewed sense of global urgency due to the political, social, cultural and economic times in which we live. They were also influenced by a shared history, theories and collective social movement, which is important to understand. We do not set any boundaries around the language and theories being used in this book, but we rather give a brief introductory overview.

Understanding models, language and movements Over 15% of the world’s population has a form of impairment, and this has come to the world’s attention due to the disability movement (WHO & World Bank, 2011). In order to understand how the disability movement became a collective global movement, there is a need to comprehend the importance of models and theories of disability to ensure a collective consciousness. It may seem as if the disability rights movement began in the 1960s with the start of the civil rights, women’s rights and other differing social movements in the UK and USA, but its origins lie earlier (Sabatello & Schulze, 2013). If we think models or theories influence language and effect social change, we note that the earliest models of disability were charity models, which is reflected in policy and legislation and early formation of organisations and institutions around specific forms of impairments. A charity model of disability views disability as something to be ‘pitied’ and a disabled p­ erson as in need of charitable aid. Thus, it looks at disabled people as individuals who are unable to do things for themselves, who need to be protected and decisions made on their behalf (Chataika, 2019). Hence, we can locate this in advocacy, for example, in the 1600s, in the early laws for the poor, infirm, aging or even aid for soldiers who gain physical and mental injuries

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through battle, as well as c­ reation of the first ‘mad’ houses and charities in the 1800s. The charity model of disability is closely tied to a medical model understanding of disability, which views disability as a problem or biological pathology that can be medically cured, fixed by medical technology or r­ ehabilitated. Thus, the medical model focuses on the impairment – on what is ‘wrong’ with the person (Oliver & Barnes, 2012). It looks at the ways in which the person deviates from the norm, and tries to narrow that gap. The assumption here is that ‘normal’ is automatically desirable and to be aspired to. The ‘problem’ lies with the individual, depending on what they can or cannot do (WHO & World Bank, 2011). Early global disability advocacy and movements were linked to colonialism and ­imperialism; for example, the creation of impairment-specific organisations and institutions, such as for ‘blind’ people (Phillips, 2009; Rembis et al., 2018). Yet, these organisations were mainly run by and controlled by non-disabled people in the global North, which were closely linked to Judeo-Christian understandings of disability. The British and Foreign S­ ociety for Improving Embossed Literature for the Blind, a forerunner of the UK’s Royal National Institute for Blind People, was founded by a doctor who had issues with his eyesight; but this remained exceptional. The great depression after the First World War meant the formation of The League of the Physically Handicapped in the USA, which advocated for welfare issues (Longmore & Goldberger, 2000). The two world wars also entailed the start of specialised rehabilitative services, inclusive of sport for service men and women who became disabled during conflict (Albrecht, 1992; Brittain & Beacom, 2018). In contrast, the social model of disability developed from the experiences of disabled people and their activism against the charity and medical models of disability, as well as the control that these professionals exerted over their lives. Thus, in the 1970s, a group called the Union of Physically Impaired Against Segregation (UPIAS) campaigned for the rights of people with impairments to participate fully in society, to live independently, to undertake productive work and to have full control over their lives. The social model of disability suggests that a person is disabled by society’s inabilities to adapt to disabled people’s needs. For example, the wheelchair is not the problem, the stairs are. UPIAS made a difference between physical, sensory or cognitive impairment and the experience of oppression created by barriers, discriminatory attitudes and exclusion, which they called disablement. According to UPIAS (1976, p. 14): It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. The social model removes the focus and ‘blame’ from the disabled person to society in ­general. Since then, the social model has encompassed not just people with physical i­mpairments, but also people with sensory impairments, intellectual and mental health conditions. This idea was foundational to understanding disablement and disability identity as imposed on top of impairment, meaning that there was nothing ‘wrong’ with a person who had impairment(s) but instead that society had to be fixed, cured or rehabilitated. This led to a more positive affirmation of a disability identity, as well as a very clear focus on removing barriers in society to ensure rights, welfare entitlements and citizenship (Shakespeare, 2017). The social model lay at the foundation of the independent living movement and anti-discrimination legislation in the UK, US, Europe and Canada (Barnes, 1991; Vanhala, 2010). What was mainly a grassroots movement became a global movement advocating the ‘Nothing about us, without us’ mantra and disability rights (Charlton, 1998).2

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Introducing disability activism

The social model also came under criticism in terms of being mainly advocated by white western men with physical impairments. Theoretically, it also came under criticism with disabled people arguing that it ignored significant experiences linked to impairment, such as pain, presupposed that disability identity should and could be ascribed to, and everyone that had an impairment was ‘oppressed’ (Dyson & Berghs, 2019). The concept of lived experience was also changing, resulting in more distinct but also fragmented identity politics and ­people who no longer identified as ‘disabled’ or ‘person with a disability’ but applied the social model to impairment (Woods, 2017). Other aspects of identity, as well as medical definitions, may carry more cogency for people and change along the life-course as impairment changes, yet there has been limited understanding of this. Hybrids of the social model have also formed, such as more social-relational models (Thomas, 2004), also found in the Nordic countries focusing on normalising the environment for disabled people, embodied models (Shakespeare, 2004; Wiseman, 2014) or/and minority models found in North America, where disability is viewed as part of a minority culture, which has rights and whose cultures need protection (Sabatello & Schulze, 2013). Others have left the social model behind, arguing for a more critical disability studies perspective and noting that disability and impairment are social constructions (Goodley, 2014). Foundational to the disability rights movement was also a human rights model of disability and the links that were institutionally made between disability and human development. The year 1975 marked the United Nations (UN) Declaration on the Rights of Disabled Persons. The 1980s marked global advocacy on disability, with 1981 declared the International Year of Disabled Persons and 1983, the beginning of the UN Decade of Disabled Persons. Such initiatives were tied to understandings of disability, poverty and development as correlated in terms of a global challenge (Ingstad & Eide, 2011). The ‘fight’ against poverty also became connected with ideas of research co-production and inclusion of people with disabilities in poverty reduction work (Yeo & Moore, 2003). Poverty is multi-dimensional as a person is more likely to be disabled if poor; disability is connected to chronic poverty, lower employment rates, lower educational attainment and higher medical expenses, especially in the global South (Charlton, 1998; Mitra et al., 2013; Mitra et al., 2017). This was conceptualised as the ‘poverty-disability and chronic poverty-­d isability cycle’ (Yeo, 2001; Yeo & Moore, 2003). However, the latest evidence indicates that disabled people also ‘face various forms of barriers and intersecting inequalities, which can result in multi-dimensional poverty, exclusion and marginalisation’ (Mitra et al., 2013; Chataika, 2019, p. 4). Thus, despite all development work taking place, particularly in the global South, there still exists a disability gap (Groce, 2018; Chataika, 2019) as disabled people are being left behind irrespective of their need of both disability-­ specific and inclusive policies (Berghs et al., 2016; Groce, 2018). The disability gap can be explained by the way in which poverty is more of a multi-dimensional matrix than a cycle. There are situational factors linked to impairment that become ‘embodied and potentially (but not necessarily) linked to disability discrimination’ (Berghs et al., 2016, p. 43) in that, chronic deprivation is correlated to entrenched inequalities affecting disabled people (Berghs et al., 2016). While national and international legislation changes have been made and litigation ­engaged in, what has been critical is the Convention on the Rights of ­Persons with Disabilities (CRPD) (United Nations, 2006). It gives expression to how poverty and development are linked to disability, which can however be addressed by changing attitudes, removing barriers and assurances of protection of rights in every aspect of life.

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In the CRPD, disability is also described as an ‘evolving concept’ and defined in terms of ­person first language, such as persons with disabilities. The CRPD states: Disability results from the interaction between persons with impairments and a­ ttitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. (United Nations, 2006) While the CRPD has been hugely influential, there have also been criticisms in the sense that real citizenship has not been achieved for many disabled people in the global South (Chataika et al., 2015; Watermeyer et al., 2018). In response, people have argued that while rights are important, so is understanding the way in which negative attitudes influence barriers. There is a difference between ableism and disablism in the sense that we live in a world that is created and ascribes positive meanings to an able-body (Campbell, 2009; Goodley, 2014). This is different from disablism, where negative meanings are associated with disability. The history of disability and activism has also been viewed mainly from the global North and in response, newer models have started to evolve: Latin, African and Asian. For instance, indigenous models inspired by southern African theory and ethics, such as an Ubuntu model of disability (Chataika et al., 2015). Others have argued for a cultural model of disability, arguing for a disABILITY MUNDUS or more transnational materialist view on disability (Devlieger et al., 2016). Despite this, a unifying model from the global South has not evolved yet and calls for decolonising disability and development studies remain cogent (Kolářová, 2016). In response to the rolling back of much of the welfare and entitlements that the disability community gained in the global North and South, there have also been calls for stronger models to protect rights such as the social model of human rights (Berghs et al., 2017; 2019) or a more radical model of disability (Berghs, 2015), which would focus on structural causes of disablement and political changes for disability justice. Others view a new impetus in the emancipatory models of disability (Barnes, 2014). However, if we look at the work of activism, it is a message of resistance and hope that is mainly being carried out by disabled people rather than the charities or NGOs (Wong, 2018). Williams-Findlay (2018) argues that any research done about disabled people’s lives has to focus on resistance, rights and reclamation. In this respect, we see a more activist or active model of disability (Levitt, 2017) that could be emerging in terms of newer theories and models of disability resistance, hope and reclamation. It is against the above background that we present the book outline. The handbook is ­d ivided into the ten broad sections, navigating into conceptual, practice, personal experiences and cross-cutting within the disability activism agenda. This introductory chapter provides the background and the book overview. The virtual roundtable captures disability activism dynamics from emerging disability activists from the global South. ­Chapters 1 to 34 are distinctive chapters, which when read together, inform the disability activism journey travelled so far and future directions. Finally, Chapter 35 brings the handbook to a conclusion by drawing lessons, best practices, challenges and opportunities for future disability activism. The handbook is therefore divided into ten parts that we introduce in turn.

Part I: Introduction – contextualising disability activism This book starts with two introductory chapters. The first introduction by Maria Berghs, Tsitsi Chataika, Kudakwashe Dube and Yahya El-Lahib provides the background of the book and how it is structured. The second introductory chapter is a virtual roundtable with activists from the global South, which sets the scene of the book. Tsitsi Chataika coordinated 8

Introducing disability activism

the virtual roundtable and gave a platform, not to the ‘usual suspects’ in disability studies, famous academics or well-known disability activists, who are acknowledged throughout this book in terms of their foundational work. She deliberately invited emerging disability activists, Abraham Mateta, Samantha Sibanda (Zimbabwe) and Krishna Bahadur Sunar (Nepal), to the virtual roundtable so that their voices can be heard at a global level. The focus shifts to those people working on the front lines of everyday activist practices. The purpose of the virtual roundtable was to understand what the ‘everyday’ consists of, in terms of new disability activism; as well as the challenges that activists now face within their contexts. It is through engaging with this chapter that readers establish what the activists think works best - confrontational or non-confrontational activism. Thinking about decolonial practices and engaging in dialogical activism means giving the floor to emerging disability activists from the global South so that the world can ‘listen and learn’ from them.

Part II: Neoliberalism and austerity in the global North Part II sets the tone of the times and justifies why activism has become so important. It is about the problems of the disability vanguard having to change with the challenges of an increasingly neoliberal world (Oliver & Barnes, 2012; Shakespeare, 2013; Goodley, 2014; McRuer, 2018). In many ways, this section is about the limitations of humanitarianism (Gill & Schlund-Vials, 2016) and inclusion when the laws begin to change around welfare and ­entitlements to health and social care, education, employment, housing and leisure. We move to the global North where there are two interlinked issues that disability activism is now fighting: 1) neoliberal economic policies and 2) the impact of austerity in rolling back many of the rights and entitlements that people have fought so hard for. We thought it was important to begin with Mo Stewart’s Chapter 1, where she discusses what the impact of neoliberalism and linked welfare reform has been in terms of realities of disabled people’s lives. She begins by explaining what is at stake in the move of liberalisation of services and institutions in the United Kingdom (UK), including the loss of dignity, human rights and people’s lives. Understanding the impact of neoliberalism entails a close reading of transnational disability politics and where to situate newer and younger members who will take over the disability movement. Hence the question: Is the disability movement equipped to deal with these future challenges? In Chapter 2, Miro Griffiths explains that the vanguard does not always include younger members in the UK’s Disabled People’s Movement (DPM) and that they might be politically more neoliberal than past generations. He found that the social model was acting as a barrier towards young people’s involvement, in that it was functioning as ideology, instead of democratic tool. He also examines how the philosophical foundations of DPM are changing which means both challenges and opportunities in term of ‘futurology’. Joanne Sansome’s Chapter 3 turns to what she thinks are the greatest successes of the disability movement in the UK, in terms of legislative changes, links with global movement and also the harnessing of social media. She gives several examples of successful campaigns that have brought people together around protests against austerity and welfare cuts. Yet, ultimately, she wonders if trans-disability solidarity for activism is possible without new paradigms focusing on employment and changed political structure in the UK and USA. She ascribes to human rights models, but notes that disability has become a reactive political movement instead of one that is proactively activist in nature. In Chapter 4, Liz Crow expresses how disabled people have been using art to resist, ­protest and ensure solidarity and how disabled people have become forgotten 9

Berghs, Chataika, K. Dube & El-Lahib

‘figures’ in austerity. She writes and illustrates Figures, which was a mass sculptural protest on the banks of the river Thames, in front of the House of Parliament, to protest against the human costs of austerity. Last in Part II is Chapter 5, where John Rae notes how the hopes and promises of ­technology for disabled people have not held true, in terms of employment and greater ­political and social involvement in daily life. Despite all the promises and opportunities of technology making things possible, it is now bound with neoliberal norms and values, and can pose as threat. John explains how technology is linked to unemployment and how ­important unions and legislation are in terms of activism and rights.

Part III: Rights, embodied resistance and disability activism Part III examines embodied activism in touching upon some of the intimate ­complexities that are linked to intersectional identities. In differing ways, new coalitions have been formed around ensuring ‘embodied citizenship’ in making the private and personal, now public so that rights can be accessed (Russell, 2011; Wiseman, 2014) or protected in sex-trafficking (Sherry, 2019). While there are risks and rewards in making the personal so public, Alan Santinele Martino and Margaret Campbell argue in Chapter 6 that this is necessary by giving an overview of ‘intimate citizenship’ and activist work to ensure sexual rights. They suggest that by guaranteeing a better intersectional understanding of the experiences of people with disabilities regarding sexuality, questions of sexual identities and practices can be highlighted, thus, dismantling barriers to sexual expression that disabled people face. Embodiment is also a concern for Fabrizio Loce-Mandes, who through his fieldwork in Italy, friendship and shared artistic endeavours illustrates how anthropologists also embody activist practices as ally in Chapter 7. Through visual materials and performances used by people in the D/deaf social movement, he and Marco analyse the ways in which the experience of the body and the notion of ‘health’ are understood, constructed and continuously negotiated in D/deaf cultural repertoires. He touches on how and why the personal becomes public in that, notions of ‘cure’ and a medical model of deafness have to be negotiated, ­resisted or accepted. More and more, diverse activist identities become negotiated around medical or ­psychiatric resistance and the ‘disability’ identity weakens as embodied resistance becomes more specified as correlated to specific type of impairment, psychiatric survivor experience, cultural or minority identity affirmation and identity politics in general. It is people with ‘lived experience’ that are at the forefront of such movements and it is this lived experience that should be affirmed as expertise (McWade et al., 2015). We have seen this in terms of the ‘neurodiversity’ movement (Ortega, 2009) that argues for a neurodiverse identity and ‘neurodiverse politics’ (Runswick-Cole, 2014). The work of activist-scholars who are open about their identities and their moral positioning in debates around language, identity and research practices has been foundational (see Milton, 2017). There has also been a similar movement in ‘mad studies’ (LeFrançois et al., 2013), which builds on mental health ‘survivor research’ in reclaiming experiences and language from professional control (Faulkner, 2017). Mad-studies, while seemingly broad, has also drawn lines around inclusion and exclusion within the movement, in terms of only insiders having access (Beresford & Russo, 2016), noting issues of colonisation from sanism (Russo & Beresford, 2015). There are strengths and pitfalls in such a stance. For example, in terms of ‘neurodiverse’ politics and the ‘us and them’ outlook in neoliberal times (Runswick-Cole, 2014), where identity and control are important, so is wider political and social support. McWade et al. (2015) argue that bridges 10

Introducing disability activism

between movements in terms of affirming and creation of impairment; for example, in terms of psycho-emotional disablism and creation of mental distress (see Graby, 2015), need to be made. Overall the (bio)medical model, linked to various conceptions of cure, has become increasingly diffuse and now seeped into all facets of life, including welfare reform entailing embodied activist resistance, also becomes a mental resistance. In Chapter 8, Denise McKenna, Paula Peters and Rich Moth give an account of the emerging mental health survivor-led social movement against ‘psychocompulsion’ to the ‘work-cure’. They elucidate welfare ‘reforms’ and shifts in mental health policy and practice in the UK. They also describe activists’ collective responses and interventions to challenge these policy agendas, noting developing alliances and strategies of resistance. Their focus is on how they can work together to ensure active policy change through direct action, protest and formation of new participatory community, inclusive of allies. The affirmation of identity, creation of new networks and movements is critical to activism; so is ensuring that activism is not controlled or co-opted by elites in terms of ensuring participatory approaches. This has led to the creation of, for example, the Participatory Autism Research Collective3, which is trying to relinquish control and power of the research process to communities of people involved. In such stances, we see a more active model of disability emerging that focuses on the ‘actions’ of disabled people (Levitt, 2017); but can we call it a model of disability if that identity is not affirmed? Are these active models of impairment affirmation or counter affirmations of a biomedical model? That is why we wanted to end Part III with Chapter 9, where Tafadzwa Rugoho in Zimbabwe reminds us of how powerful the affirmative model of disability (Swain & French, 2000) is when one acquires impairment and becomes disabled. While he notes medical and charitable models of disability, he explains how a rehabilitative model is found within affirmation of disability and why he uses the disability identity as embodied ammunition in being able to advocate for himself. The chapter reminds us that for all the work on identity politics, it is the disability rights frameworks and legislation that people can fall back on to advocate for themselves and ensure their rights.

Part IV: Belonging, identity and values: diverse coalitions for rights In Part IV, we examine the needed expansions of the disability rights frameworks and what the work of activism looks like when rights are missing in terms of self-advocacy. We begin with Liz Crow and Wendy Merchant in Chapter 10, who write about their experiences of motherhood as disabled women with disabled children. One found her way to activism through advocating for her child; the other found the onset of impairment in her child disrupted and changed her activism. In their chapter, they note the relationship between activism and impairment and share what they have learnt about ‘holding’ activism. They note that their moral authority is linked to motherhood and how impairment constantly calls that authority, their roles as mothers and even activism for their children, into question. In Chapter 11, Kate Swaffer, Brian LeBlanc and Peter Mittler share their personal ­experiences of dementia and why a large part of their activism revolves around combating the questioning of the dementia diagnosis. In many ways, they are using a human rights model to combat charity and pity models linked to dementia, as well as fighting against ideas of segregation and enforced helplessness. They share their global advocacy and activism; how they think that a disability framework and particularly the CRPD (United Nations, 2006) is needed by people with dementia to progress beyond what is currently poor care, poor diagnosis rates and the continued medicalisation of dementia. They advocate for an understanding of dementia in terms of a disAbility. 11

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In Chapter 12, we are presented with how a disability legislative framework is also needed for claims of reparations against a state history of eugenics (Bashford & Levine, 2010; Steele, 2016). Disability histories, gender, ethnicity, impairment and intersectionality to violence are examined through the voices of male and female survivors of forced sterilisations of Japan’s Eugenics Protection Law 1948–1996 by Nagase Osamu. He notes how survivors and their families are speaking out against state-sanctioned medical violence through the courts, and how they found a new legislative process to demand reparations. After twenty years, the Japanese state is finally compensating people who were forcibly sterilised because of learning disabilities, mental health and genetic conditions. Through survivors’ accounts, we note how violence against disability is often linked to incarceration and structural violence in society, in how disability is viewed as dishuman (see also Goodley & Runswick-Cole, 2016; Steele, 2018). Through families of survivors, we are also introduced to how disablement affects families and violence is intergenerational and acts as an environmental contagion, which reparations seeks to heal. Such an understanding of rights and advocacy reveals how disability is intertwined with the social and environmental. In Chapter 13, Khairani Barokka extends our understanding of disability through Indigenous Species and artistic description of how climate change is linked to histories of neoliberal ­violence and colonialism that disables. The chapter illustrates how disablement is ongoing in killing ecosystems in the global South and creating more violence in both the human and non-human.

Part V: Reclaiming social positions, places and spaces Part V is about how activism for social positions, places and spaces in society are ­‘mobilised’ by disability, challenging societal norms and arguing for more encompassing ideas of ­citizenship. Throughout this section, we note how disability challenges ideas of place and space in terms of mobility and occupation (Block et al., 2015). Chapter 14 by Damian Haslett and Brett Smith is on disability sport as a context for disability activism. In particular, they discuss the potential of elite Paralympic sport to understand new forms of disability activism and differences to the disability movement. In Chapter 15, Ciro Pizzo, Carmela Pacelli and Maria Grazia Gargiulo explain how a university got involved in ensuring accessibility of museums, art and cultural heritage through their exploration of the ‘Naples in the Hands’ network. They examine how legislation becomes linked to universal design but also complexities in how total accessibility for everyone is not possible. Concerns with accessibility drive the ‘Around the Toilet’ project in Chapter 16 by ­Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp, Eleanor Lisney and Sarah Rennie. ­Reflecting on the contemporary context of toilet activism and issues of accessibility in the UK, they situate the toilet within a wider disability justice movement which speaks to issues of austerity, categorisation, in/visibility, and both social and physical marginalisation. In Chapter 17, we are introduced to the idea of ‘mobility’ and how that continues to be shaped in the Caribbean nation of Trinidad and Tobago in a history of colonialism and post-colonial neoliberalism. Sylette Henry-Buckmire introduces the idea of ‘mobility-­a soccupation’ and activists who use a variety of (non)confrontation types of activism.

Part VI: Social media, support and activism Part VI focuses on social media and what kind of role the ‘new medias’ are playing in disability politics and activism. In times of political turmoil, social media has meant the 12

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creation of online communities where disability activism takes place (Trevisan, 2018). In Chapter 18, Nqobani Dube argues that the use of social media in the global South has been neglected and marginalised by research examining the experiences of disability activists in the global North and priorities of neoliberalism. He interviewed disability activists in Zimbabwe and South Africa to establish their experiences of online activism. He makes connections to understanding online disability activism in terms of a social movement, but notes limitations of such activism. He also touches on activism in times of political repression. Chapter 19 moves to Brazil, where Marco Antonio Gavério, Anahi Guedes de Mello and Pamela Block give a virtual ethnography of a cyber-activist campaign linked to the International Day of Disabled People, celebrated on the 3rd of December. They describe how the activists collectively met on Facebook and started to fight ableism through the hashtag #ÉCapacitismoQuando (#It’sAbleismWhen). In their chapter, they note the importance of timing of campaigns, embodied history of political repression, which may prevent older activists from involvement, and context of digital activism that ensures a new generation gains a platform. Chapter 20 illuminates how disability history and disablement is embodied and linked to past and present political movements in how journalists, lawyers and academics use social media. Hannah McGlade examines how disabled indigenous people are caught up in the prison industrial complex in Western Australia and explains connections to the Black Lives Matter movement in the USA. She highlights how the neglected experiences of ­Indigenous prisoners (women, men, children) are found online in family protests, news stories, legal documents, academic websites and reports to demonstrate that racism is not just institutionalised, but also part of the social fabric of creation of more disablement; making h ­ uman-rights based reforms imperative. In Chapter 21, Anna Chowaniec-Rylke examines how, despite criticisms about lack of digital privacy, Facebook is an important element of health movement activism, especially for parents of children with a rare genetic condition in Poland. She notes how the Internet is a means of advocacy, for not only the value of their children and ensuring they are part of family life, but also in terms of dealing with bureaucracy to secure their human rights.

Part VII: Campus activism in higher education In Part VII, we move towards understanding campus activism in higher education and what the academy includes, excludes and avoids (see Bolt & Penketh, 2017), as well as how resistance is politically constructed in the face of academic ableism (Wolbring, 2008; Dolmage, 2017). Chapter 22 illustrates how the ableist infrastructure of post-secondary education in the USA is not genuinely inclusive of disability as a full part of the university community, focusing instead on bureaucratic, medical or teaching ‘compliance’ to the Americans with Disabilities Act. Stephanie Cork, Beth Douthirt-Cohen, Kelly M. Hoffman, Paul T. Jaeger and Amanda Strausser illustrate how a university can actively include disability culture, activism and advocacy as foundational to its work. They note how in the USA, popular culture has become disablist and disinformed (Cork et al., 2017), including on campuses, and ask us to become not allies but accomplices, which is a more radical political stance. In the USA, disability is viewed as part of a greater diversity, in line with a minority model of disability, and the authors argue that disability policies and practices in higher education should not be ‘random’, but part of politics of inclusion. 13

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In Chapter 23, Armineh Soorenian illustrates how intersectionality and diversity in i­mpairment is not reflected in academia. She shares a moving account of her trajectory to PhD as a disabled woman and the violence of the academy in disableism, sexism and racism, as well as her resistance to this through her work. Soorenian was unemployed for several years after her PhD, even though publishing, attending conferences and teaching at the highest levels in the academy. She describes considerable personal and academic ‘unpaid labour’ outside the academy and how there were never any ‘reasonable adjustments’ made for her (Inckle, 2018). Chapter 24 examines how the creation of cultures of inclusion through greater ­sensitisation should not just focus on nondisabled people, but also on disabled people. Pragya Deora gives examples from a campus in India, noting how intersectionality needs to be mainstreamed in student activism around disability. Chapter 25 gives an example of what undergraduate activism looks like on campus in the USA. Erin Davenport describes how an art installation project was started with her non-­ disabled friend and ally, focusing on experiences of disabled students using elevators. It illustrates how resistance begins with the feeling of indignation at an injustice and then protest to educate, re-tell and ensure change. Davenport also examines archival material to reclaim a kinship and history with other disabled students who faced discrimination and oppression.

Part VIII: Inclusive pedagogies, evidence and activist practices Part VIII focuses on the increasing correlations between inclusive pedagogies, evidence and activist practices, especially in terms of greater need to illustrate qualitative and quantitative impact in terms of social change. We turn to how academics, higher education and activism are working together against ableism and disablism to ensure this change. In Chapter 26, Martin Musengi shares his ‘DeafCrit’ activism as an academic against ‘audism’ in higher education. He explains how he became an academic activist in ensuring Zimbabwean Sign Language was recognised as an official language in Zimbabwean schools and discusses issues such as reverse inclusion. In many ways, this draws on DisCrit or an intersectional framework, together with disability studies and critical race theory, in examining connections between disability, education and ethnicity to explain life trajectories of marginalisation, ­segregation and incarceration (Ervelles, 2011; Annamma et al., 2013; Annamma, 2016). As illustrated in Chapter 10, one of the most marginalised and segregated groups that have been disproportionately globally affected by cuts to services and austerity are people with learning disabilities (Bates et al., 2017; Carpenter, 2018; Power & Bartlett, 2018). As a group they have been hit in all aspects of their lives, from health, education, employment, welfare, reproduction, and justice to incarceration. For example, in the UK, a confidential inquiry found that people with learning disabilities or difficulties face multiple forms of discrimination, while men died on average thirteen years earlier than the general population; and for women, it was twenty years (Heslop et al., 2014). This makes Chapter 27 so critical, as Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine Austin, Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa Horan-LaRoche, Rainbow Hunt, ­Nathan Gray, Rex Marchi, Donna McCormick, Romeo Dontae Tresean Biggz Pierre and Sean Rowley explain why inclusive co-produced research and knowledge with people who are labelled with intellectual disabilities, is a political and rights-based practice. Building on the slogan of the disability movement ‘Nothing about us without us’ (Charlton, 1998), they explain how ensuring societal respect and value begins with a sharing of control over research processes to challenge wider societal attitudes and discrimination. The chapter 14

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is aligned to emancipatory models of disability research (Barnes, 2014) and action research (Bradbury, 2015), which prioritise citizen co-production (Beresford & Croft, 2016). It also advocates for inclusion in all forms of research and collection of research evidence (Berghs et al., 2016). Chapter 28 examines how participation and the statistical collection of evidence for ­d isability rights is understood in the Disability Rights Promotion International (DRPI) system globally. Marcia Rioux, Paula Campos Pinto, Dagnachew Wakene, Rados Keravica and Jose Viera explain how evidence-based participatory indicators can be used to provide a strong account of what poverty, exclusion and the denial of rights mean to disabled ­people. They note how it is important to monitor progress for disability rights to understand what enables or disables activism, arguing that participatory and emancipatory monitoring ­strategies are urgently needed to ensure social change.

Part IX: Enabling human rights and policy: international politics Part IX scrutinises what enables disability rights, justice and policy in terms of international political perspectives on activism. Chapter 29 explains how transitions to human rights frameworks are structurally implemented in Eastern European post-Soviet states and why there is a struggle between imitating what has been done before, required by international politics, and national authenticity in developing rights. Egle Sumskiene, Violeta Gevorgieniene and Rasa Geniene illustrate this through the implementation of the CRPD (United Nations, 2006) and how it functions in terms of bureaucracy on paper or in legal frameworks, but not always practically in changing lives and ensuring the rights of disabled people. In Chapter 30, Marie Sépulchre and Lars Lindberg give an overview of the history of the disability movement in Sweden and highlight different strategies activists have used to ensure welfare reforms. They argue that there has to be a shared vision or mission statement between a national and the international disability movement. They also examine newer tactics of disability activism such as litigation and the use of social media, and examine their effectiveness. Chapter 31 examines how disability rights intersects with other rights and how they are politically implemented in terms of gender mainstreaming in the global South. Emma Frobisher, Willem Elbers and Auma Okwany argue that gender and disability mainstreaming is often the work of national and international NGOs. They illustrate implementation policies of one such NGO in the West African country of Sierra Leone. They argue that such programmes for female empowerment, despite their criticisms in terms of neoliberal consumerism and ignoring structural causes of female disempowerment (Switzer, 2013; Hickel, 2014), were found to be positive for girls with disabilities. Drawing on Crenshaw (1989; 1991), they argue for more research on intersectionality to understand why rights become implemented in terms of interplay between age, gender, disability and other inequalities. In Chapter 32, the intersections between new activist movements and the disability movement is highlighted to illustrate how they can give impetus and innovate intersectional identities and spaces. Melissa Graham describes the formation of the Toronto Disability Pride March (TDPM) in Canada in 2011, the year of the Occupy protests in which disabled people played a pivotal role. She notes that what was a one-person event grew out of intersections of ableism, sanism and other forms of oppression and was influenced by the Occupy movement’s successes and failures. The creation of such newer intersectional spaces for Lesbian, Gay, Bisexual, Transgender/sexual, Queer/Questioning (LGBTQ+) are critiques of a disability movement in which some may not feel comfortable, as they are 15

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typically controlled by white heteronormative men from the global North. Graham terms this a form of disability justice and notes the limitations of the social model, having links to institutions that also oppress, arguing that it is not necessary to remake the past but challenges us to rethink it.

Part X: Conclusion – the coming challenges and future directions Finally, in Part X we turn to challenges of the disability movement and what a transnational and emancipatory politics would look like. In this section, we also provide the final chapter, which brings together the book to a sound conclusion. In Chapter 33, A.K. Dube engages in an analysis of disability mainstreaming in terms of a supply and demand perspective of disability rights holders. He notes all the political successes of the disability movement in getting their agendas for change in different types of legislative and political frameworks by examining the relationship between disability and development. He addresses key questions that many activists struggle with, where are the resources going and how can we get them to ensure disability programmes and policy implementation? Chapter 34 turns to the migration and disability nexus and argues for more i­nterdisciplinary analysis, bringing together different ways of knowing to ensure more theoretical and practical innovation (El-Lahib, 2017). Natalie Spagnuolo and Yahya El-Lahib argue that we need to allow different ways of knowing in terms of translocalism. They argue that by reconceptualising displacement through a consideration of translocal, disability realities entail a broadening of analytical lenses to account for disabled people who have not crossed geographic boarders. In this way, it becomes possible to view people with intellectual disabilities as sharing similar support needs as many migrants and refugees. Both groups have experienced considerable stigma, questioning in terms of citizenship and loss of rights in neoliberal times (Goodley, 2014; Tyler, 2013; 2018) and can be viewed as ‘abject’ or lying outside of the rights of citizenship. In terms of globalisation and neoliberalism, disability activism is about defining how and why disability matters or does not. In this way, new activisms need to be built to illustrate what it means to be human, why that is under threat and what we can do about it. Chapter 35 brings to the book to a conclusion by drawing lessons, best practices, ­challenges, and opportunities for more strengthened disability activism. Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and Kudakwashe Dube reflect on how each chapter feeds into each other and the conclusions can inform future directions for sustainable disability activism that has positive implications on the livelihoods of disabled people all over the world.

Conclusion Disability activism, while inclusive of new activism and technological developments, is about more than just disability. It is also about how values of equality, inclusion, respect and dignity become translated in our everyday lives. We hope that we lift the veil of what disability activism is about and illustrate how and why people are engaged in new forms of resistance. We wanted to work in a participatory way that would ensure that people’s frustrations, challenges and rewards of activism are highlighted, to ensure a greater understanding of how to support such advocacy and why disability activism is crucial. Throughout this book, we have also focused on the importance of why an interdisciplinary perspective is important, welcoming allies, accomplices or coalitions (Fearon et al., 2018) for disability hopes and futures.

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Notes 1 See https://www.sinsinvalid.org/. 2 This has also entailed that we were questioned about our links to disability and identification as ‘disabled’ in this book project. 3 See https://participatoryautismresearch.wordpress.com/.

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A VIRTUAL ROUNDTABLE Re/defining disability activism with emerging global South disability activists Tsitsi Chataika (ed), Samantha Sibanda, Abraham Mateta and Krishna Bahadur Sunar Introduction Tsitsi Chataika The justification for this virtual roundtable book chapter is to interrogate disability activism in the global South from the perspective of emerging disability activists. We understand that a disability rights movement is a global social movement aiming to secure equal opportunities and equal rights for all disabled people (United Nations, 2006). The intention of any disability activism is to break attitudinal, environmental (physical and communication) and institutional (policy and programming) barriers, which prevent disabled people from realising human rights, just like other citizens (Chataika, 2019). Activists and critical disability scholars are aware that the disability community tends to be fragmentary and politically inactive as they are often socially and physically isolated (Haagaard, 2017). This is due to disabled people being usually enculturated by ableism beliefs and disabling models of disability such as the medical and charity models of disability (WHO Health Organization [WHO] & World Bank, 2011; Wapling & Downie, 2012). Thus, disability rights concerns become fragmented as a result of their practical implementation at more localised levels of government. Hence, the need for disability activism, or rather advocacy, which is focused on operational aspects of services rather than the broad systemic issues that underpin issues of inequity and access for marginalised groups (Haagaard, 2017). This is because smallscale interventions are easier to conceptualise and implement, with immediate tangible results to politicians or corporate patrons who tend to sponsor impairment-specific interest groups. That is why top-down charities tend to dominate advocacy work in fragmentary contexts. Regrettably, this disfranchises disabled people making disability rights activism challenging. It is beyond the scope of this chapter to discuss about the history and status of disability rights activism and related policy-making. Rather, the chapter focuses on re/defining disability activism with emerging global South grassroots disability activists. I am also interested in the emerging disability activists’ reflections on the ways in which the notion of disability activism interacts with and influences the way disability is being conceptualised in their cultural locations. 21

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Speaking from the geo-political location of Zimbabwe, I am thinking about the role of emerging grassroots disability activists whose voices are usually overshadowed by the established disability activists. Could we perhaps re-imagine the notions of stuckedness, retrogressiveness, non-development for critical work towards disability activism (Haagaard, 2017), which practically improves the lives of disabled people? Thus, this thematic virtual roundtable as indicated earlier, provides a space for discussion around the issues re/defining disability activism with emerging grassroots disability activists, but also around the questions of productive disability activism. Also, how can there be possibilities for alliances between the global South and the global North in promoting progressive disability activism without undermining each other? I seem to have more questions than answers. To address these and many other questions, this virtual roundtable discussion is structured into three parts. ­Authors sequentially contribute to the critical questions raised, while basing their arguments with the nature of their grassroots activism work in their countries, at the same time, ­d rawing lessons from other contexts.

Post one Tsitsi Chataika To open our conversation, I want to discuss the ways in which our work reflects the ­geopolitical investments in disability activism. This thematic roundtable is thought to provide a space for discussion around the issues re/defining disability activism with emerging grassroots disability activists, but also around the questions of productive disability activism. Chataika, Berghs, Mateta and Shava (2015) argue that disabled people have always been involved in several of forms of activism. The authors also argue that ‘the sites of disability resistance dislocate spaces of activism from global to local and challenge our perceptions of what it means from global to local’ (Chataika et al., 2015, p. 188). It also further challenges what it means to have a voice and to be heard. Hence, my initial questions are: Are we witnessing the rise of a new disability activism or is there a need for a new disability activism? Is disability activism just becoming reactionary than social agenda setting? Are identities politics still at stake or are activists moving towards safeguarding disability rights?

Samantha Sibanda I totally agree with the need to redefine disability activism and engage more into productive disability activism. It is indeed overdue to challenge the current disability activism trend and allow emerging disability activists to have a more pronounced voice within the disability discourse. The new disability activism should channel its energy more on the rights-based approach. As an emerging disability activist, I have observed a sort of competition among disabled people’s organisations (DPOs) and disability activists themselves. In Zimbabwe for instance, there seems to have no common disability agenda as each organisation and individuals have their own motives, resulting in having disjointed voices. If a new activism would arise, one that would allow productive discussion forums so that we have a common understanding with regards to disability rights, then a new dispensation would have emerged. This kind of having unified goals will go a long way in influencing policy, with implications for inclusive intervention programmes that can improve the lives of disabled people in ­Zimbabwe. I also believe that as disability activists, we need the type of activism that enables us to represent all disabled people. For instance, we should be able to have a person with 22

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albinism who is able to articulate issues to do with the hearing impaired or visually impaired people. This is the nature of disability activism I believe would change the status of disabled people in Zimbabwe. I am convinced that the current type of disability activism in Zimbabwe somehow ­discriminates nondisabled activists. As a psychiatry survivor, I am concerned about how the United Nations Convention on the Rights of Persons with Disabilities (CRPD) defines a disabled person. Its definition includes those who have long-term physical, mental, intellectual or sensory impairments (United Nations, 2006). Hence, it seems to sideline people like me. So I conform to nondisabled people, together with others who have undergone various rehabilitation interventions. The current activism also sidelines academics, which I find very unfortunate as they research issues from various countries and are informed of what has failed or succeeded. Thus, academics and nondisabled people sometimes do not have a seat at the table, despite the efforts they make in their day-to-day lives. This makes activism challenging for people like me, who cannot always explain their experience as I seem to be a citizen of two worlds (Sithole, 2019). Being a psychiatric survivor and also a seemingly nondisabled person, has given me the privilege to look at the world through the lens of both disabled and nondisabled people. I am also an ardent supporter of self-representation. However, I feel that that there is need to build the capacity of the crop of emerging disability activists so that they become the catalysts of change that promotes disability inclusion in development processes. I agree with Forber-Pratt and Aragon (2013) who observed that the voice of disabled people is being silenced in discussions about disability. In most cases, it is because most of them are not well-informed about the topical disability issues and the general national debates. That is why I am in support of Charlton (1998) who argue that disabled people need to take control of their own lives. However, without capacity development, the level of disability activism is comprised to petty talks and confrontational disability activism, which unfortunately widens the gap between disabled and non-disabled people (Chataika, et al., 2015). Hence, the need for both disabled and non-disabled people joining hands in creating a more inclusive platform, at the same time, giving disabled people a voice since they are the ones who have the firsthand experience of having impairments. People with disabilities live in a society and not a vacuum. Therefore, they should engage other people who will also help propel their struggles. In the past, I thought that an activist should be experiencing a situation or speaking on behalf of others. However, I now strongly believe that this should be redefined as I have realised that most activists support and believe in the agenda they are pushing for.

Abraham Mateta I start my response to this discussion by indicating that Zimbabwe, from where I write, ­presents a very interesting situation because although belonging to the global South, it produced globally renowned disability rights activists. Obviously, it follows that any discussion of the need for transformation of disability activism in such a situation demands a lucid justification. Secondly, fragmentation to the disability movement as aptly captured by Tsitsi in the introductory part of the chapter and reiterated by Sibanda, is a potent challenge. As activists therefore, we must strive to bring unity of purpose and clarity of thought into the current disability activism at local level. I therefore contend that while the need for change in disability activism cannot be overemphasised, there are some fundamental issues that should be borrowed from the old activism. As emerging activists, while well-grounded in the needs of our locality, we must be able to understand international trends in disability. 23

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Zimbabwe has a history of having produced world-class disability activists. This is quite surprising however, because not withstanding that, interventions on disability by the State are largely predicated on the charity and medical models. It is not the intention of this discussion to explain this perplexing paradox; but to bring to the foreground the fact that there is inevitably, a need for a transformation of disability activism to respond to current challenges. Most of the old activists who put Zimbabwe on the map in disability activism are still around and in some cases regarded as ‘territorial fathers’ or gate keepers (Mungoni, 2009). There is an obvious uneasiness between the old activists and the emerging activists, with the latter accusing the former of muzzling their voice; while the former equally deride the later for having a myopic if not perilous understanding of disability. It is my considered view that in a country such as Zimbabwe, if ever disability activism is to transform for the better, there is need for an inter-generational dialogue between the old guard and the emerging activists. Difficult as it may seem, there is noticeably a need to build some kind of consensus. This will ensure that the young emerging activist is adequately grounded in the foundation of salient disability rights principles, which must never be absent in any activism worthy its name. Tromel (2009) argues that the ‘nothing for us without us; mantra is a corner stone of disability issues and formed the basis of the CRPD. Disability activism must therefore, at all times be guided by this. Sibanda raises the issue of the marginalisation of non-disabled activists as an impediment to disability development. With this notion, I agree to an extent. It is imperative to realise that in a situation like Zimbabwe where the charity and medical models have always been the predominant schools of thought, disabled people feel riled by non-disabled activists who use disability as a money making venture (Mateta, 2014). It is therefore critical that all activists, be they disabled or non-disabled, must seek to promote as a non-negotiable issue, the visibility of persons with disabilities to meaningfully be involved and actively participate on issues that concern them. Disability activism therefore, must transform into an empowerment tool, which can help persons with disabilities to also occupy positions of authority. One of the greatest impediments to disability inclusion in Zimbabwe is the lack of political power (Mateta, 2014). I strongly believe that a true disability activist must aim to ensure that persons with disabilities speak for themselves. Transformation of disability activism is very important given that disability is an international issue. The CRPD, to which many countries including Zimbabwe are States Parties, emphasises the need for international cooperation in disability (United Nations, 2006). It naturally follows that a true activist must seek to be able to export into global disability rights discourse, issues such as how disability rights can be understood within the communitarian systems in Africa that are opposed to the individualistic life styles predominant in the global North from where most disability scholarship comes from (see Chataika et al., 2015). In the context of Zimbabwe, activists must be able to export into the global disability discourse, the concept of Ubuntu (Chataika, 2012). Transformation of disability activism in the global South also entails that activists must be grounded in understanding the use of technology and encourages the development of locally available and cheaper technologies to empower persons with disabilities. For instance, the World Blind Union (2013) estimated that about seven percent of all accessible literature makes it into accessible formats for those who are blind or visually impaired. A local activist must work hard to deal with such an information gap. Such activists will understand that they have something to give to the global movement while also taking from there, what is crucial for their localities. It is therefore clear that while Zimbabwe provided some of the brains behind what the world is proud of in disability activism, it appears there is institutional memory, which is likely getting lost and there is an urgent need for an inter-generational dialogue to remedy 24

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the situation. The understanding that disability is a societal issue rather than a personal ­t ragedy (Barnes, 2012) inevitably means that disability activists can and should be both disabled and non-disabled. What should however be of importance is that such activists must work to ensure the visibility of persons with disabilities in decision making spaces. The need for the transformation of disability activism also stems from the need to have activists who ­appreciate the international character of disability rights.

Krishna Bahadur Sunar It is clear from the above discussion that disability is a complex phenomenon as it reflects an interaction between the features of a person’s body and features of the society in which he or she lives. However, the current pace of disability rights movement spans back from the world war where many people had been injured during the war. Later on, it came into the human rights perspectives passing through the different models of disability. Therefore, disability has been recognised from the human rights based perspective only after the promulgation of CRPD (United Nations, 2006). As disability is both a cause and consequence of poverty, it is considered as both a human rights and development agenda. However, while many studies evidently show that persons with disabilities are the poorest of the poor in the world, they are however left behind in mainstream development and have restriction in social participation on an equal basis to others (WHO & World Bank, 2011; Grech, 2016; Chataika, 2019). The socio-economic status, cultural acceptance and political participation of those persons with disabilities in the Asia Pacific region are comparatively worse. Though the disability rights movement in the global South has a long history, its perspective has not been changed so much to bring a transformational change in the lives of the persons with disabilities. With reference to a country like Nepal, the disability rights movement has just a decade long history. There are two types of disability rights movements – one is ‘for movement’ and another is ‘of movement’. The disability rights ‘for movement’, was initiated by people without disabilities who claimed to represent the needs of persons with disabilities. However, it was merely from cultural and medical perspectives. Some disability specific Acts, policies and programmes were also made by the government. However, these were specifically from welfare approach and persons with disabilities never got an opportunity to have equal recognition and opportunity to use their full potential in the society. After 1990s, just after the restoration of democracy, persons with disabilities became more aware of their rights and initiated the ‘of movement’ and it puts disability rights activists to the centre stage in fighting for the rights of persons with disabilities. This right-based movement took momentum after the promulgation of CRPD in 2006. After the continuous efforts of disability rights advocates and DPOs, the Government of Nepal signed and ratified the CRPD and its optional protocol in 2008 and 2010 respectively. With the ratification of the CRPD, disability rights activists and their representative organisations actively advocated for the promulgating of disability inclusive policies and programmes. Unfortunately, the government (including other national and international development agencies working in the country), have not yet come out with such specific programmes. Although the disability rights movement in Nepal comparatively in South Asia is recognised as stronger, there are no tangible changes in persons with disabilities’ lives. Therefore, it has been realised that there is a need of a paradigm shift for a new disability activism as indicated by Mateta. With the rising of disability rights movement, there is a huge fragmentation among DPOs. Also, disability rights activists still lack a shared understanding on the common agenda of 25

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persons with disabilities with regards to the rights that should be advocated for. The ­d isability activism has been becoming more reactionary than the social agenda setting. Though the Government of Nepal is already a State Party of the CRPD and has ­promulgated some essential Acts and policies, these are not implemented effectively. The disability activism in Nepal therefore, has been ineffective in setting up such monitoring mechanism where it can create pressure to the government to effectively implement existing policies. It can be argued that disability activism efforts in Nepal seem to be unclear about the future course of disability rights on how it needs to be taken forward with the changing country’s context as it has already gone into the new federal structure. There is no powerful government structure driving disability issues, as well as bridging the gap between the government and persons with disabilities. Due to lack of envisioning such powerful structure by the disability activists, the disability movement will not move forward in alignment with the global movement. Another huge gap in disability activism in Nepal is that it is still not being able to reach to the grassroots to bring their strong voices in the forefront of rights movement. There is a huge gap of second line leadership in the disability rights movement in Nepal. Whatever the current changes within the disability rights movement, has been achieved mainly by only one generation of leadership. But, due to the lack of preparing second line leadership with a new perspective on disability to take it into another level, seems a big challenge. The new disability activism should introduce the disability rights movement not from reactionary approach, but from a non-confrontational approach (Chataika et al., 2015). Also, Sibanda has brought in an important issue of bringing in persons without disabilities, but at the same time, acknowledging what Mateta has warned against – that disabled people should be in the forefront. That way, we might be able to bring in a lasting solution in disability activism where the entire community makes a deliberate effort to ensure that disability rights are part and parcel of the development agenda, with the ultimate goal of positively changing the lives of the persons with disabilities.

Tsitsi Chataika I agree with Sibanda’s perspective of redefining disability activism and engage more into productive ways of lobbying and advocacy. This kind of unified goals will go a long way in influencing policy, with implications for inclusive intervention programmes that can improve the lives of disabled people. She also advocates for a new disability activism that enables representation of all disabled people, which has implications for changing their status in Z ­ imbabwe. In addition, Mateta argues that as activists, it is important to strive to bring a unity of purpose and clarity of thought into the current disability activism. He further contends that while there is a need for change in disability activism, there are some fundamental issues to be borrowed from the old activism. As emerging activists, while well-grounded in the needs of our locality, it is important to understand international disability trends disability. Sunar also argues that the disability rights activists have no common understanding of disability rights in Nepal and this has been worsened by lack of a unified voice among persons with disabilities. Hence, disability activism is more reactionary than being proactive in order to ensure disability inclusion. Furthermore, Sunar noted the lack of effective coordination of disability issues within the government structures, as well as a strong links with persons with disabilities. I concur with much of what has already been said, particularly when I reflect on what is being currently experienced in Zimbabwe. As argued before, most DPOs in Zimbabwe are 26

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grossly under-resourced, and in order to access funding, they seem to be heavily aligning themselves with international funders, who in most cases have their own agendas (Chataika et al., 2016). For example, if funders focus on impairment-specific issues, some leaders of DPOs and their cheerleaders benefit, while the majority of disabled people are alienated. I have seen disability activism die as a result of power dynamics or divided rule, where ­impairment-specific organisations have been formed to represent their particular needs at the expense of other impairment groups. Unfortunately, this has provided policy-makers with an excuse not to look at the access needs of all disabled people because the disability movement no longer speaks with a united voice, thus, defeating the whole essence of disability activism meant to promote inclusive development. This weakens disability activism as the disability movement becomes disjointed, separated according to ‘impairment’, and it ­struggles to r­ emain relevant within the development agenda. The tragedy is that, with the current economic situation in Zimbabwe, disabled people will support anyone who can assist with their immediate concerns, even if their own voices are silenced. I feel that there is an urgent need to create spaces for Zimbabwean disability activists to have a united voice so that they can reclaim notions of rights in their own ­terminology in order to change policy and practice. This takes us to the next set of questions, which aim to create a more engaging discussion on the role of pioneer disability activists.

Post two Tsitsi Chataika In the first round, Mateta talked about the need to revisit the journey walked by pioneer disability activists. The disability rights movement of today can trace its immediate l­ineage – directly or indirectly, to the pioneer disability activists to see the very first emergence of a self-conscious movement for disability rights, organised by disabled people themselves, and promoting a view that closely foreshadows that of the social model of disability. In this second round, the following questions guide the discussion: What was the role of the pioneer disability activists? What does it mean to be a (grassroots) disability activist today in your contexts? How does the role of pioneer disability activists influences/impacts on the emerging grassroots disability activists?

Krishna Bahadur Sunar Disability rights movement in Nepal before 1990s was informed by the welfare approach (Eide, Neupane & Hem, 2016). However, the disability rights movement has been slowly rising for the past forty years due to the strict rules when setting up and running social and civil society ­organisations as they needed authority and promotion from the Royal Palace. Following the year of International Year of Persons with Disabilities as proclaimed by the United Nations in 1981, Nepal enacted the Protection and Welfare of the Disabled Persons Act 1982. This saw the emergence of disability activism as result of a policy promulgated by the State. However, this policy also viewed and treated persons with disabilities from the welfare perspective. At this stage, the disability movement was being led by people without disabilities. After the restoration of democracy in Nepal in 1990s, people from various sections of the society began to raise their voices, establishing non-governmental organisations. Subsequently, this political transformation in Nepal also provided a new door of opportunity to 27

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disability activism, where disability activists and social workers came together to advance human rights and disability issues. Disability activists established their own organisations and started to focus on empowering the disability movement. The most crucial roles that the Nepali disability activists played was raising awareness and lobbying and advocating for disability rights to be understood from a human rights perspective. While reviewing the history of disability movement in Nepal, various studies evidently shows that the pioneer disability activists have concentrated their efforts in uniting and making their voice stronger so that the State can pay attention to them. The new Constitution of Nepal, 2072 has just been promulgated and several noteworthy rights of persons with disabilities, including the right to political participation, are enshrined in this national legal document (The Government of Nepal, 2015). Different issues regarding disability have been incorporated such as the fundamental rights, social justice, State’s obligations, policies and guiding principles. The transformation of the situation of persons with disabilities can be expedited simultaneously with the State transformation process. It has created the light of hope for future development. Thus, with the adoption of a new constitution in 2015, most of the marginalised and traditionally excluded groups of people are raising their voices, demanding all their rights to be included into the mainstream of the development process with their full and effective participation in decision making. Persons with disabilities are also among those who are tirelessly fighting for equal opportunities in national development processes. With the rising of disability movements, with more focus on rights-based perspective, p­ ioneer disability rights activists strongly advocated for the promulgation of disability inclusive policies in various sectors. Consequently, the Protection and Welfare of the Disabled Persons Rules 2051 (1994) came into being after a ten-year gap of the effective implementation of the Act by the former His Majesty’s Government. Thus, the pioneer disability activists played crucial role in ensuring the promulgation of the disability-specific policy, as well as other sector policies and programmes (e.g. Special Education Policy, free education provision for persons with disabilities, amendment in defining and classifying the definition of disability and providing disability identity cards with the aim of increasing their access to the Government’s services). The pioneer disability activists also played a vital role in formulating Disability Identity Card Distribution Guidelines of Government of Nepal; Childhood Management Strategy; Community Based Rehabilitation Guidelines 2066 BS and the National Policy and Plan of Action. They were also instrumental in the ratification of CRPD. In view of that, pioneer disability activists in Nepal hugely contributed in the recognition of the disability rights. Over the years, perceptions towards disability have varied significantly from person-­toperson and community-to-community. Hence, the emerging disability activists in Nepal, just like the 1990s activists, continue to fight for equality, dignity and social justice. These pioneer disability activists were from grassroots level, who concentrated at national level to give recognition of disability rights to the fore, just like any human rights movement in Nepal. However, this has created a huge gap between national and local levels; urban and rural areas. More than 80% of the total population lives in the rural areas (WHO & World Bank, 2011) and they are deprived of easy access to food, road, transport, education, health, employment and many more. The majority of disability rights movements in Nepal therefore, are concentrated at central or national level. This is despite the fact that grassroots issues are mostly unheard or are tackled from a top-bottom approach. Consequently, there has not been a significant change in the lives of grassroots persons with disabilities despite of all these

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policy level changes. Hence, emerging disability activists need prioritise grassroots disability activism, while at the same time targeting national level. Recently, many grassroots persons with disabilities in Nepal have been emerging as self-conscious disability activists. Hence, they have better access to the governments’ resources and schemes as compared to the past. This is mainly due to the influence of pioneer disability activists. Many community level self-help groups are being established and these groups are advocating about their rights at community level as well as raising awareness on disability issues at community level. This is working as a catalyst in linking the disability movements at various levels; that is, from grassroots to national and from rural to urban settings. Many young disability activists with strong academic background, new vision and new thoughts have been emerging in this recent era. This has seen a new wave of strong grassroots disability activists in on emerging within the disability rights movement. Hence, the need to acknowledge the role played by pioneer disability activists. At the same time, acknowledging the role of emerging disability activists who are bridging the grassroots/ national and rural/urban divide that has been in existence for a long time.

Samantha Sibanda Pioneer activists play a vital role in the disability movement. They are much needed now as they were then or even more. The disability movement should depend on them if it is to achieve more, particularly on policy issues. For me, the greatest role is mentorship. Pioneer disability activists are aware of the milestones achieved and mistakes made since they walked the journey and are also watching as events are currently unfolding within the disability circles. Guidance is needed in the movement and I believe pioneer activists should take up such a role; hence the need to capacitate emerging disability activists. I will make continuous reference to one, Joshua Malinga from Zimbabwe, whom I view as a pioneer activist. Hence, I will give a brief introduction based on the key areas I would like to express. Joshua Malinga is the current advisor to the Zimbabwean President on disability issues. He serves as a Senator and as the Mayor of Bulawayo in the 1990s, which is the second largest city in Zimbabwe. He has a strong political background and vast experience in lobbying. He reiterates the struggle of lobbying for the Disabled People’s Act (1992) as having been a real struggle and not having been handed on a silver platter. Some pioneer activists have established themselves (locally and internationally) and we would love to see them setting up platforms to mentor emerging activists. We would love to see them grooming young people with disabilities to represent themselves and run for public office so that those with disabilities can be in policy making positions. Grassroots activists on the other hand as Gahatraj highlighted, are always in close contact and live amongst disabled people. They are unique because they are abreast with the day-today dynamics of challenges being faced by the majority of disabled people. Hence, grassroots activists should have a major role to play in lobbying and advocating for disability rights. They are strategically placed in educating both disabled and nondisabled people. With the advent of social media, which the majority of emerging activists are well versed in and have access to, should be used as a tool for lobbying and advocacy. If such platforms as Facebook, Twitter and WhatsApp would be taken advantage of, so much could be achieved in terms of changing societal attitudes. Thus, while pioneer disability activists are still relevant in disability rights advocacy, their main role should be that of mentoring emerging grassroots disability activists and at the same time, letting them take the centre stage to ensure disability activism growth.

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Abraham Mateta As I indicated earlier, Zimbabwe has produced some of the finest disability rights activists; not only for the country, but for the continent and the world at large. This discussion indeed, brings us face-to-face with the reality of a need for more scholarship on the development of disability activism in Zimbabwe and other parts of the global South (Chataika et al., 2015). In the limited scope provided here, I will attempt to answer the three questions which have been raised in the second round. It is important to understand that in Zimbabwe, prior to the attainment of independence, disability work was largely the preserve of Christian missionaries and philanthropists. The government always took the backbencher’s role. The most prominent philanthropist who rose during that time and eventually turned into an institution was called Jairos Jiri. Though not very highly educated, he dedicated his life to the construction of centres to provide ­education and shelter for disabled people (Farquahar, 1987). We can never talk of the history of disability activism in Zimbabwe without referring to the Jairos Jiri Association. This is because more than 90% of the pioneer disability activists in Zimbabwe in one way or another passed through the Jairos Jiri system. Akin to the western world where some activists came together courtesy of staying in disability homes, the pioneer disability activists started to unite from within the Jairos Jiri Association environment. Jairos Jiri’s work sheds light on the historic processes behind disability work common in many parts of the world: the transition from no services at all, to charitable institutions, to growing disability activism and the formation of a disability movement (Chataika, 2007). Pioneer disability activists realised that there is need for solidarity of disabled people. They did so by forming organisations and the first such organisations were specific-­impairment organisations. Some of the earliest organisations of this nature were the National Council for the Disabled Persons of Zimbabwe, which mainly catered for those with physical impairments and the Zimbabwe National League of the Blind (1973), which serve people with visual impairment. By occupying their space, pioneer disability activists taught us to respect the ‘nothing for us without us’ principle, which has become one of the chief cornerstones of the disability movement world-wide. After gaining independence in 1980, the government did not depart from the charity model, notwithstanding that the independence had come as a result of a protracted war of liberation, which left many people disabled. However, independence provided a breeding ground for organisations that were in existence to flourish, and new ones to proliferate. One of the direct results of the disability movement in Zimbabwe is that we had the likes of ­A lexander Phiri, Rose Mudarikwa, Ishamael Zhou and Joshua Malinga who not only provided leadership locally, but internationally. As for Joshua Malinga, he at one time rose to be the President of Disabled People International (DPI), a group that championed the need to look at disability as a rights issue, as also highlighted by Sibanda earlier. Nationally, the pioneer disability activists helped to push for the promulgation of the Disabled Persons Act of 1992. At that time, that piece of legislation was considered one of the best globally. In that respect therefore, the pioneer activists defined legislative reform as one of the key goals of disability activism. A grassroots activist must always aim to raise the consciousness of the disabled people in their area to lobby for a more inclusive legislative and policy framework. The law must not be silent on disability if progress has to be achieved. It is unfortunate that at some point, the disability rights ‘train’ in Zimbabwe ran out of steam for reasons that are beyond the scope of my response; but suffice it to say that one thing which

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we, grass roots disability activists should take as a legacy from the pioneer activists is the need to always target legal and policy reform to be an outcome of our work. I strongly believe that one characteristic of the DPOs in Zimbabwe as set up by the ­pioneer activists was that they were heavily dependent on donor funding. Some of the ­organisations besides doing advocacy programmes were also involved in empowerment programmes for their members. This in turn made it easy to support their members while also supporting organisations. When relations between Zimbabwe and the West soured after the year 2000, donor funding shrunk. In fact, the little donor funding available to organisations had stringent conditions and was for advocacy and political activities. This meant less and less participation from members of those organisations in various activities, including the running of the organisations. This has created a disjuncture between organisations that are still largely run by some of those pioneer activists. It is therefore imperative that a modern grassroots activist must be able to come up with creative means of sourcing for funds. One such a way is to adopt community ownership of disability issues. This will allow the local business people and other interested people to actively fund and support programmes of such organisations. As grassroots activists, it is important to work out interventions that give us access to ordinary people. Currently, it is the feeling of many ordinary disabled people in Zimbabwe that organisations are pursuing an elitist agenda. This is more so given the rural-urban divide, which Gahatraj referred to. The majority of disabled people in Zimbabwe are in the rural areas. A modern activist must therefore have programmes that give him or her access to both rural and urban disabled people.

Tsitsi Chataika Sibanda has argued for the need to redefine disability activism and engage more into ­productive way of lobbying and advocacy. I agree with her perspective that a new activism would allow productive discussion forums so that we have a common understanding with regards to disability rights. This kind of unified goals will go a long way in influencing policy, with implications for inclusive intervention programmes that can improve the lives of disabled people in Zimbabwe. Mateta contends that while there is a need for change in disability activism, there are some fundamental issues to be borrowed from the old activism. As emerging activists, while well-grounded in the needs of our locality, it is important to understand international disability trends disability. Gahatraj noted lack of effective coordination of disability issues within the government structures, as well as a strong link with persons with disabilities. I concur with much of what has already been said, particularly when I reflect on what is being currently experienced in Zimbabwe. As argued before, most DPOs in Zimbabwe are grossly under-resourced, and in order to access funding, they seem to be heavily aligning themselves with international funders, who in most cases have their own agendas (Kolá řová et al., 2016). For example, if funders focus on impairment-specific issues, some leaders of DPOs and their cheerleaders benefit, while the majority of disabled people are alienated. I have seen disability activism die as a result of power dynamics or divide and rule, where impairment-specific organisations have been formed to represent their particular needs at the expense of other impairment groups. Unfortunately, this has provided policy-makers with an excuse not to look at the access needs of all disabled people because the disability movement no longer speaks with a united voice, thus, defeating the whole essence of disability activism meant to promote inclusive development. This weakens disability activism

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as the disability movement becomes disjointed, separated according to ‘impairment’, and it ­struggles to ­remain relevant within the development agenda. The tragedy is that, with the current economic situation in Zimbabwe, disabled people will support anyone who can assist with their immediate concerns, even if their own voices are silenced. I feel that there is an urgent need to create spaces for Zimbabwean disability activists to have a united voice so that they can reclaim notions of rights in their own ­terminology in order to change policy and practice. This takes us to the next set of questions, which aim to create a more engaging discussion on the future of disability activism.

Post three Tsitsi Chataika As we draw to a conclusion of this roundtable, we reflect upon the following questions: Does disability need to be decolonised? Can activism only be done by disabled people or disability rights activists? How can there be possibilities for alliances between the global South and North in promoting progressive disability activism without undermining each other? What will the issues of the future be and what are the different tactics and politics needed?

Krishna Bahadur Sunar Defining disability is a complex phenomena as it varies from socio-economic, cultural and geographic context from country-to-country. However, there are inadequate researches and studies in the global South that reflects the real understanding of disability. While Nepal lacks originality in defining disability as its definition is heavily influenced by the global North, it is still ingrained in the traditional/cultural model and medical/charity model of disability. Therefore, it is very imperative to decolonise disability to reflect its originality and real understandings. As I mentioned earlier in both rounds one and two that the Nepali disability rights ­movement has significantly moved from the ‘for movement’ to the ‘of movement’, this has seen significant policy changes. Informed by the nothing about us without us mantra, disabled people should be the main drivers of their issues in the disability activism agenda. In Nepal, many disability rights activists now understand that DPOs and their leaders are the main disability activism stakeholders. There are few non-for-profit making organisations that lobby and advocate for disability rights in Nepal. However, these organisations have now changed their ways of operation by including disabled people in their committees and staff. The realisation of the rights of persons with disabilities is not possible through advocacy of disability rights activists only. This is because in Nepal, disabled people’s voice is less heard or ignored by the State and the decision makers since they are considered as small in numbers and less powerful to influence at decision-making levels. Therefore, Nepali DPOs in some cases, take the solidarity from other human rights activists and civil society organisations to make their voices heard. Thus, while disabled people should take the centre-stage in disability activism, it is also important to have like-minded allies who can also support in lobbying and advocating for disability rights (Chataika et al., 2015). The disability movement from the global South is mostly influenced by the global North. Therefore, it is very essential to strengthen disability studies so that it becomes one of the major academic disciplines in the global South. This will increase the number of disability scholars in global South, which 32

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are inclusive of disabled people, who can come up with a contextualised perspective. This is likely to promote genuine exchange of knowledge between the global South and North. I also believe that this will create alliances between the global South and North in promoting progressive disability activism without undermining each other. In context of Nepali disability rights movement, despite having policy level changes, now the disability movement has to move forward and create a new second line generations of disability rights activists. Thus, the disability movement should promote grassroots disability activism. Also, the Nepali disability movement should commence the academic discourse on disability with adequate research evidence based on indigenous knowledge. Consequently, a strong disability movement will have been established in Nepal.

Samantha Sibanda I understand colonisation as introducing a system, where to a high degree, is borrowed and imposed on the colony. In this regard, disability should be decolonised. I have experienced a ‘them and us’ binary divide system in Zimbabwe, where people are separated or separate themselves based on having impairment or not. Disabled people are not spared on this as well, as some of them seem to be suspicious of non-disabled people; hence, intentionally refusing to associate with them. Having worked in the disability fraternity for more than eight years, I have realised that some people believe that the way I say, do and comment on disability issues is because I am ‘non-disabled’, yet it is not true. Thus, invisible impairments seem not to be understood by many, including fellow disabled people. Most disability-­related issues affect me equally the way they affect my fellow disabled people. Furthermore, by associating with each other, it only gives us a better understanding of ourselves and our daily struggles. Another system in Zimbabwe is that of placing disabled people under the social welfare department. This system has influenced laws and policies in the wrong direction, which ­negatively impact on disabled people. Their cause is seen as a charity rather than a human rights issue. Disability activists in Zimbabwe are in constant argument with the following statement in our Constitution: ‘subject to the availability of funds’. This implies that disability issues seem not to be understood from a human rights perspective. That is why I support the Africa Disability Protocol as it brings the CRPD to Africa. Having acquired knowledge on disability, as Africa, we should have a common understanding as nations about our regional challenges and how we should solve them. Ubuntu for example says ‘I am because you are’; hence, people are there for each other’ to support each other for progress or elimination of a problem. It is therefore important to define our own activism as a people. I have worked with Civic Society Organisations for a long time and I can testify that funding is in the interest of the donor. Hence, for us to tap into the funds, our proposals should align to the funding interests or requirements. Decolonising implies that as the receiving nations, we should not only be able to define the disability agenda, but also funding it in order to avoid depending on outsiders for our own agenda.

Abraham Mateta In my concluding remarks, I wish to underscore important key things that I feel should guide any future progressive disability activism. It is clear that times have changed. ­Therefore, grassroots disability activists will do themselves a huge service to appreciate that while the challenges of exclusion and discrimination on grounds of impairment remain embedded in 33

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the fabric of our society, they sometimes take subtle forms that it calls for the activist to be more creative than ever before. An alert mind is one of the sharpest tools that activists worth their name should currently possess. Grassroots disability rights activists ought to understand that it is important to appreciate the international character of disability. In fact, Article 32 of the CRPD (United Nations, 2006) urges State Parties to cooperate in their interventions on disability. There is indeed a promising future for cooperation between the activists from the global North and global South. Indeed, there is a lot of literature on disability, which has been developed by the global North from which activists in the global South can tap into and tailor make it to their circumstances. One good example is the social model which has been developed by such people as Mike Oliver of blessed memory. The social model of disability, which remains very important in that it reshapes the politics of disability by providing a conceptualisation framework that, does not encumber persons with disabilities with environmental factors inhibiting their equal and effective participation in all spheres of endeavour. It is important to underscore the fact that if true development should take place ­between activists from the global North with those from the global South, the issues of power ­relations should be properly managed. In most cases, those from the global North, by virtue of having financial resources, which are put into disability, often, impose conditions on programmes that are transferred to the global South (Chataika et al., 2015). It is important for this to change. Secondly, mostly, global South usually adopts a communitarian as opposed to the individualistic approach to humanity. That is why concepts such as Ubuntu which say, ‘I am because you are and therefore we are’ are very critical to countries such as Zimbabwe. It will be interesting for any activism as Samantha has clearly indicated, not to miss the need to reconceptualise disability interventions within our context. There was an era where confrontation was the order of disability rights fights. I contend that currently, while borrowing from some of the methods that were being used by the pioneers of the movement, cooperation is now the way to go than confrontation (Chataika et al., 2015). To that extent, it is very crucial that activists in the global South be well-­informed and well-researched in order to confront challenges with facts rather than emotions. D ­ isability activists therefore must seek to spread their wings in all spheres of socio-political and economic sectors. I have no illusions about the fact that it is possible that disability activists can either be disabled or non-disabled. Yet, I shall maintain as I have always done from the beginning that true disability activism is the one that always seeks to give persons with ­d isabilities the voice to speak for themselves.

Concluding remarks: Tsitsi Chataika I would like to end this virtual roundtable discussion chapter by focusing more on the last question of post three: What will the issues of the future be and what are the different t­actics and disability politics needed? There has been a lot of misunderstanding and anger in the ­d isability activism. However, what is critical is to redefine the advocacy role to a more non-­ confrontational one if disability issues are to be understood at policy-making level and by the general public. This is because there are issues related to the danger of using confrontational methods in advocacy work; and of increasing disabled people’s participation development ­processes, particularly in the global South, as indicated by Mateta in Post three. When it comes to disability activism, our struggle and efforts should be biased ­towards challenging ‘oppression, voicelessness, neocolonisation, as well as the “them and us” ­ideology’ (Chataika et al. 2015, p. 190) using a non-confrontational approach. Thus, dialogue 34

A virtual roundtable

is critical to ensuring that disability genuinely becomes part of the sustainable development agenda. Chataika et al. (2015, p. 190) further argue that the [sustainable] development agenda ­requires ‘thinking critically about how to develop new paradigms based on African self-­ emancipation, partnership and attention to the inclusion process of third spaces’, who are usually marginalised from the development agenda. In this case, I interpret disabled people as the ‘third spaces’, whose needs and voices usually follow after the global North disabled people and global South non-disabled people. Chataika et al. (2015, p. 193) claim that: neoliberal political regimes situate disability discrimination within the realm of soft rights [over hard rights]. Most disability activists argue that there is more focus on soft rights, with no legal consequences for lack of implementation of these soft laws. Soft rights are not spelled out in the law and if they are, there is no strong and effective mechanism to assure their implementation. The CRPD for example, in itself establishes only soft rights. They can be transformed into hard rights if national and local governments create suitably strong national and local laws along with effective agencies to implement the rights in the convention. Hard rights are clearly articulated in the law and are accompanied by effective implementation and accountability mechanisms. Hard rights have a history of case law through which the meaning of the right is tested and refined. There is clear recourse in law for individuals whose rights are not fulfilled and clear public accountability. Therefore, while a lot of hope is invested in the CRPD, which many African countries have signed and ratified, the major challenge is to ensure that this international legal framework is domesticated into national policies. The African disability movement and its allies need to reclaim notions of rights in their own terminology of Ubuntu, as indicated by Mateta in Post three. Thus, the African ­Disability movement needs to work on ‘hard’ rights that can lead to economic and social change in policy and practice, taking into account, gender and disability mainstreaming. Chataika & McKenzie (2016) argue that Ubuntu, which is an African concept, is about having no one existing as a human being in isolation, but rather as interconnected species. The argument here is that it is this form of togetherness that can foster social justice, with the hope of realising the post-2015 SDGs in Africa. Insights presented above are there to strengthen my argument on the dangers of confrontation, which has the potential of causing disagreements and the loss of the point one hopes to communicate. I am aware that the history of activism to date across the globe, Zimbabwe included, is very confrontational and filled with risks, imprisonment, violence and death. Also, a lot of work in this book is about protests and having to become confrontational. However, from experience, I have come to realise that staging a well-thought-out, calm and positive dialogue can allow one to speak out their mind in peace without causing serious backlashes. A practical example is where we engaged one of the African airline authorities regarding a discriminated disabled passenger in 2015. Instead of taking them to court or heralding the issue in the media, we decided to have a dialogue with the airline’s senior management for the benefit of any other potential disabled passengers. Key to the meeting was the ability to articulate issues without fighting, but highlighting what had gone wrong and how that affected the concerned passenger. The airline agreed to conduct disability awareness training to all its employees for them to have the knowhow of handling disabled passengers. The concerned passenger was also compensated. The airline authorities appreciated the whole approach we used and we have since seen very positive results from how this airline 35

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is now dealing with disabled passengers. This experience provided me with some learning points that have turned me into a ‘positive non-confrontational activist’ and the benefits that come along with this approach. These benefits are documented in Chataika (2017, p. 181): • • • • • • •

To promote constructive engagement, it is important to avoid dragging people into confrontation and negative criticism. Positive activism makes people become part of the solution and not the problem. Positive engagement yields quicker, better results than negative attacks. It is important to seek amicable solutions before criticising. Positive activists promote action rather than argument. Positive activists promote accountability and results. Confrontation should be used as the last option.

The argument for using the non-confrontational approach as the first option is that, ­confrontation usually puts an individual on the ‘hot seat’, thus making him/her defensive and feels hurt, angry and attacked. Taking time to agree with the person one is confronting can help relax him/her and take them off the defensive mode into a more productive communication mode. Therefore, if there is any chance of promoting cohesion between disabled and non-disabled people, then confrontation should be avoided at all costs. Thus, instead of sunbathing in the double-marginalisation confrontational arguments, disabled people and their allies should ‘de-educate’ and ‘re-educate’ their ‘perceived oppressors’ as in the case of the African airline reported earlier; lest they miss the ‘inclusive sustainable development ship’. I therefore strongly believe that if African disabled people and their allies are to engage in productive disability activism, different tactics and enabling disability politics are needed. Hence, non-confrontational disability activism can be one of these tactics that can yield positive results in ensuring that the voices of disabled people are heard by policy makers, which in turn will promote disability inclusion in Africa in policies and programmes for inclusive sustainable development.

References Barnes, C. (2012). Re-thinking disability, work and welfare. Social Compass 6(6), 472–484. Charlton, J. I. (1998). Nothing About Us Without Us. Los Angeles: University of California. Chataika, T. (2019). Introduction: critical connections and gaps in disability and development. In T. Chataika (ed), The Routledge Handbook of Disability in Southern Africa (pp. 3–13). London: Routledge. Chataika, T. (2007). Inclusion of disabled students in higher education in Zimbabwe: from idealism to reality – a social ecosystem perspective (PhD thesis). The University of Sheffield, School of ­Education, Sheffield, Leeds. Chataika, T. (2017). Disabled women, urbanization and sustainable development in africa. In A. Lacey (ed), Women, Urbanization and Sustainability: Practices of Survival, Adaptation and Resistance (pp. 179–198). London: Palgrave Macmillan. Chataika, T. (2012). Postcolonialism, disability and development. In D. Goodley and B. Hughes (eds), Social Theories of Disability: New Developments and Directions (pp. 252–269). London: Routledge. Chataika, T. and McKenzie, A. J. (2016). Global institutions and their engagement with disability mainstreaming in the South: Development and (dis)connections. In S. Grech & K. Soldatic (eds). Disability in the Global South: The Critical Handbook (pp. 423–436). Geneva: Springer International Publishing. Chataika, T., Berghs, M., Mateta, A., & Shava, K. (2015). From whose perspective anyway? – the quest for African disability rights activism. In A. de Waal (ed), Advocacy in Conflict: Critical Perspectives on Transnational Activism (pp. 187–211). London: Zed Books.

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A virtual roundtable Eide, A. H., Neupane, S. and Hem, K (2016). Living conditions among people with disability in Nepal. Oslo: SINTEF Technology and Society: Department of Health Research. Retrieved from https://www.sintef.no/globalassets/sintef-a27656-nepal-printversionfinal.pdf on 16 August 2019. Farquahar, J. (1987). Jairos Jiri – The Man and his Work 1921–1982. Gweru: Mambo Press. Forber-Pratt, A. J., & Aragon, S. R. (2013). A model of social and psychosocial identity development for postsecondary students with physical disabilities. In M. Wappett & K. Arndt (eds), Emerging Perspectives on Disability Studies (pp. 1–22). New York: Palgrave Macmillan. Grech, S. (2016). Disability and development: critical connections, gaps and contraditions. In S. Grech & K Soldatic (eds). Disability in the Global South: The Critical Handbook (pp. 3–20). Geneva: Springer International Publishing. Haagaard, A. (2017). The state of disability rights activism and policy-making in Canada. Retrieved from https://medium.com/@alexhaagaard/the-state-of-disability-rights-activism-and-policy-makingin-canada-6223bf20ef2e on 4 September 2018. Kolá řová, K. (ed). (2016). ‘What kind of development are we talking about?’: a virtual roundtable with Tsitsi Chataika, Nilika Mehrotra, Karen Soldatic and Kateř ina Kolá řová. Somatechnics 6(2), 142–158. Mateta, A (2014). The new Jairos Jiri: a discombobulating tragedy. Retrieved from http://www.mukoma-a. blogspot.com on 10 February 2019. Mungoni T. (2009). Understanding the History of the Disability Movement in Zimbabwe. A paper presented for the training of NASCOH members in the Governance programme at Management Training Bureau Centre on 14 September 2009. Sithole, I. (2019). A citizen of two worlds. In T. Chataika (ed), The Routledge Handbook of Disability in Southern Africa (pp. 305–314). London: Routledge. The Government of Nepal (2015). The Constitution of Nepal, 2072. Retrieved from http://­ extwprlegs1.fao.org/docs/pdf/nep155698b.pdf on 13 July 2019. Tromel, S. (2009). A personal perspective on the drafting history of the United Nations convention on the rights of persons with disabilities. In G. Quinn & L. Waddington (eds), European Yearbook of Disability Law 59(1), 87–115. United Nations. (2006). Convention on the Rights of Persons with Disabilities. Retrieved from http://www. un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-­d isabilities.html on 18 March 2017. Wapling, L., & Downie, B. (2012). Beyond Charity: A Donor’s Guide to Inclusion – Disability Funding in the Era of the UN Convention on the Rights of Persons with Disabilities. Boston: Disability Rights Fund. World Blind Union (2013). The World Blind Union guide to the Marrakesh Treaty. Retrieved from https://www.wipo.int/edocs/mdocs/copyright/en/wipo_cr_mow_17/wipo_cr_mow_17_­ topic_2_c.pdf on 12 July 2019. World Health Organization [WHO] & World Bank. (2011). World Report on Disability. Geneva: WHO.

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PART II

Neoliberalism and austerity in the global North

1 THE IMPACT OF NEOLIBERAL POLITICS ON THE WELFARE AND SURVIVAL OF CHRONICALLY ILL AND DISABLED PEOPLE Mo Stewart Introduction Our lives begin to end the day we become silent about things that matter. (Martin L ­ uther King Jr, 1929–1968) There can be no greater injustice than a democratically elected government terrorising their most vulnerable citizens for ideological purposes and perceived political gain. That’s especially true when that abhorrent activity is ongoing in a nation that is historically identified as being at the heart of democracy, the United Kingdom (UK). As the Conservative Prime Minister from 1979 to 1990, Margaret Thatcher was the first neoliberal politician in the UK. This American-imported political ideology places ‘the market’ as priority over all p­ olitical decisions, with future negative consequences for millions of British people guaranteed as ‘tolerated harshness’ (Young, 2013) in society became the norm, and greed replaced need as toxic neoliberal politics gradually swept the world (Giroux, 2018). The UK adopted United States of America (USA) neoliberal social policies (Daguerre, 2004), and has gradually ­m igrated towards becoming an authoritarian state. Giroux (2018, para 10) argues: (…) mass inequality, wage slavery, the collapse of the manufacturing sector, tax ­g iveaways to the financial elite and savage austerity policies that drive a frontal attack on the welfare state have further strengthened fascistic discourses. Not only has neoliberalism undermined the basic elements of democracy by escalating the mutually reinforcing dynamics of economic inequality and political inequality – accentuating the downhill spiral of social and economic mobility – it has also created conditions that make fascist ideas and principles more attractive. Since the earlier ‘70s, the neoliberal project has mutated into a revolt against human rights and democracy and created a powerful narrative that refigures freedom and authority so as to legitimize and produce massive inequalities in wealth and power. It practices the offshoring, restructuring everything according to the dictates of profit margins, slashing progressive taxation, eliminating

41

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corporate regulations, allowing unchecked privatization and the ongoing commercializing of social interactions, ‘inflicts alienating misery’ on the newly vulnerable to fascist ideals, rhetoric and politically extremist movements. According to the National Archives, Margaret Thatcher, together with her Chancellor Sir Geoffrey Howe, suggested the removal of the British welfare state in her first term in office, which generated ‘the nearest thing to a cabinet revolt in the history of the Thatcher administration,’ as identified in 1982 cabinet papers (Travis, 2012). However, without the mandate of the British people, Thatcher’s stated goal to eventually remove the welfare state never actually went away (Scott-Samuel et al., 2014). McChesney (1998, p. 7) placed the adoption of neoliberalism firmly in the hands of Thatcher and Reagan and argued that: Neoliberalism is the defining political economic paradigm of our time – it refers to the policies and processes whereby a relative handful of private interests are permitted to control as much as possible of social life in order to maximise their personal profit. Associated initially with Reagan and Thatcher, for the past two decades neoliberalism has been the dominant global political economic trend adopted by political parties of the centre and much of the traditional left as well as the right. These parties and the policies they enact represent the immediate interests of extremely wealthy investors and less than one thousand large corporations. Following in Thatcher’s footsteps, neoliberalism would be increasingly used to negatively impact on the welfare and, ultimately, on the physical and financial survival of chronically ill and disabled people who are unfit to work ( Jolly, 2012; Monbiot, 2016). Adopting neoliberal politics, every UK government since Thatcher has worked towards the eventual removal of the welfare state, to be replaced by private healthcare insurance, as increasingly authoritarian social policies were introduced with resulting catastrophic human consequences for many (Stewart, 2016a, 2017a, 2018a). Monbiot (2016, p. 31) observed: Neoliberal policies are everywhere beset by market failure. Not only are the banks too big to fail, but so are the corporations now charged with delivering public services. Business takes the profit, the state keeps the risk. The greater the failure, the more extreme the ideology becomes. Governments use neoliberal crisis as both the excuse to cut taxes, privatise remaining public services, rip holes in the social safety net, deregulate corporations and re-regulate citizens. The self-hating state now sinks its teeth into every organ of the public sector. Perhaps the most dangerous impact of neoliberalism is not the economic crises it has caused, but the political crisis (…). The result is the disempowerment of the poor and the middle. As parties of the right and former left adopt similar neoliberal policies, disempowerment turns to disenfranchisement. Large numbers of people have been shed from politics (…) Judt explained that when the thick mesh of interactions between people and the state has been reduced to nothing but authority and obedience, the only remaining force that binds us is state power. ‘Sick and disabled Brits killed by the state’ (Stewart, 2018a), began when John Major replaced Margaret Thatcher as the UK Conservative Prime Minister from 1990–1997. Continuing with Thatcher’s neoliberal agenda, it was Major’s 1992 administration that invited the thennamed UnumProvident Insurance to consult, with reference to the goal of reducing the future costs of income replacement benefit for chronically sick and disabled people who are 42

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unfit to work. John LoCascio was appointed as the corporate consultant in 1992 but, by 1994, this American corporate healthcare insurance giant was appointed as official government advisers on future welfare claims management (Stewart, 2016a, p. 54). The 1994 Social Security (Incapacity for Work) Act introduced Incapacity Benefit (IB) (Wikeley, 1995); designed to limit access to out-of-work long-term sickness benefit, which had significantly increased due to increasing numbers of claims for psychological causes of illness (Rutherford, 2007). By 1995, the Department for Social Security’s (DSS) Principal Medical Adviser, Mansel Aylward, co-authored an academic paper with the appointed American corporate consultant John LoCascio. Aylward and LoCascio’s (1995) argument that there were problems in the assessment of psychosomatic conditions in social security benefits and related commercial schemes was mainly supported by evidence from the healthcare insurance industry in the USA. They argued that the UK’s General Practitioners (GPs) should not be expected to determine a patient’s incapacity, and so the authority and clinical opinion of GPs would eventually be curtailed and replaced in October 2008 with an unaccountable private contractor conducting a non-medical functional assessment identified as the Work Capability Assessment (WCA). The Aylward and LoCascio (1995) paper expressed concern as to the increases in ­subjective impairments with conditions such as ‘Chronic Fatigue Syndrome’, as the significance of ­d iagnosis was rejected as having ‘a high degree of subjectivity’ (Aylward & LoCascio, 1995). This had implications for the welfare budget, and it was suggested in the same paper that Incapacity Benefit (IB) claimants should have a psychiatric evaluation. In 2001, the DSS changed its name to the Department for Work and Pensions (DWP). Mansel Aylward migrated to the new department and was appointed as the DWP Chief Medical Officer (CMO), which was a position he held until April 2005. The year 2001 was also significant for the ‘Malingering and Illness Deception Conference’ (Halligan, Bass & Oakley, 2003) held in Oxford in November of that year. Stewart (2016a, p. 59) explains: This unmitigated social policy disaster must have started somewhere and, it appears, it all began at a conference, near Oxford. Justification for the future demolition of the welfare state was created in November 2001 at the ‘Malingering and Illness Deception Conference’, held at Woodstock, near Oxford, with the conference attended by likeminded individuals including Aylward and LoCascio, from UnumProvident Insurance, who both made a contribution. (…) At least one expert compared chronically sick and disabled people to APES (p. 54) and, of course, there were a number of ‘experts’ in ­Psychology waxing lyrically about the causes of psychosomatic illnesses and illness deception (…) All these ‘experts’ were authorities in their relevant academic fields and all had strong opinions about ‘malingering’ and so, gradually, the planned future demolition of the welfare state would be brought into being as there was no representative at the conference to challenge this collected opinion. Attended by Aylward, most of the thirty-nine conference participants had a link to ­UnumProvident Insurance and their conference conclusion, that the majority of people claiming Incapacity Benefit should be ‘incentivised’ to work, has influenced every UK ­government since 2005. Rutherford (2007, pp. 40–41) found: What linked many of them together including Aylward, were their association with the giant USA income protection company UnumProvident, represented at the conference by John LoCascio. The goal was the transformation of the welfare system. The 43

Stewart

cultural meaning of illness would be redefined; growing numbers of claimants would be ­declared capable of work and ‘motivated’ into jobs. A new work ethic would transform IB recipients into entrepreneurs helping themselves out of poverty and into self-reliance. Five years later these goals would take a tangible form in New Labour’s 2006 Welfare Reform Bill. Aylward left the DWP in 2005 to become the first Director of the new UnumProvident Centre for Psychosocial and Disability Research at the University of Cardiff, funded with £1.6million by the American corporate government advisers (COVER, 2004; WPSC, 2006). This was the preamble to the future use of outsourced private contractors by the DWP to assess chronically ill and disabled people and to reduce access to long-term sickness and disability benefit, as previously identified by their family doctor.

The American influence on future UK welfare reforms Legislation introduced by the right-leaning New Labour government in 2006: ‘A New Deal for Welfare: Empowering People to Work’, (DWP, 2006), was adopted and guaranteed the beginning of the end for the UK welfare state as it used neoliberal politics to justify the reform of welfare funding, which really meant ‘the planned demolition of the UK welfare state’ (Stewart, 2016a). Daguerre (2004) identified the policy transfer of USA social and labour market policies by New Labour, with the Blair government adopting ‘New Deal’ as its major programme, ‘at the heart of British activation programmes for the unemployed’ (Daguerre, 2004). Daguerre (2004) highlighted the Americanisation of British social policies, which included the adoption of conditionality and compulsion for target groups, and the requirement to accept a job in return for social security benefits, which emphasised personal responsibility with adverse consequences for failure to adhere to the requirements of access to unemployment benefit. Daguerre (2004, p. 44) argues: The promotion of employment in the 1980s followed a distinctively neo-liberal route. Self-sufficiency through paid work was the single governing principle of welfare reform. According to American writers such as Murray (1984) and Mead (1986), welfare dependency was the main social problem in the USA. Poverty was not the result of a shortage of jobs or social inequality. Instead, deprivation was due to behavioural problems. Jobs were available but the poor would not take them because they had a low work ethic. The Employment and Support Allowance (ESA) replaced IB in the UK from October 2008 and, with it, increasingly severe conditionality would be imposed by the DWP to restrict access to the out-of-work long-term sickness benefit. Diagnosis and prognosis were disregarded as the UK welfare reforms mirrored American neoliberal social policies (Stewart, 2016b). The undertaking of future work-related interviews for ESA claimants would be a requirement of the new ESA benefit. Threats of the consequences of claimants failing to adopt the ESA benefit conditions were identified (DWP, 2006), as DWP coercion was gradually increased. It was difficult to decipher the difference between the previous Conservative Party rhetoric and the planned reforms to social security long-term disability benefits created by the New Labour government, led by Prime Minister Tony Blair, not least because both governments were adopting the same American social policies without public consultation or ethical approval. 44

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This is explained given that Mansel Aylward was the influential Principal/Chief Medical Officer at the DSS and DWP for both the John Major Conservative government and for New Labour. Mansel Aylward was sponsored with £1.6million by UnumProvident Insurance at Cardiff University (COVER, 2004). UnumProvident Insurance were identified in 2007 by the Yale School of Law as using a system of ‘bad faith disability denials’ (Langbein, 2007) and, in 2008, by the American Association of Justice (AAJ, 2008) as, ‘the second worst insurance company in America.’ In 2005 Mansel Aylward, together with Gordon Waddell, produced the commissioned research ‘The Scientific and Conceptual Basis of Incapacity Benefits’ ­(SCBIB) (Waddell & Aylward, 2005). The Waddell and Aylward (2005) research, which didn’t require peer review when commissioned by the government, recommended their biopsychosocial (BPS) model of assessment for future disability benefit claimants, which sealed the fate of those in greatest need as the Waddell and Aylward (2005) BPS model disregards medical opinion. In ‘The UnumProvident Scandal’ Langbein (2007, pp. 1318–1319) argues: Pressures peaked in the last month of each quarter, called the ‘scrub months,’ when claims managers exhorted staff to deny enough claims to meet or surpass budget goals. Word of these practices began to emerge in lawsuits brought by former Unum claims-processing employees, and in investigative reports broadcast in 2002 by NBC’s Dateline and CBS’s 60 minutes news programmes. Employees interviewed on the Dateline programme disclosed that claims that were ‘the most vulnerable’ to pressures for bad faith termination were those involving ‘so-called subjective illnesses, illnesses that don’t show up on x-rays or MRIs, like mental illness, chronic pain, migraines, or even Parkinsons’. The Dateline story pointed to an internal company email cautioning a group of claims staff that they had one week remaining to ‘close’, that is, deny, eighteen more claims in order to meet the desired targets. The 2005 DWP-commissioned research (Waddell & Aylward, 2005) was adopted by New Labour in October 2008 to justify the use of the new WCA for all ESA applicants; which guaranteed that many chronically ill and disabled people would be refused access to longterm sickness benefit because the WCA uses the fatally flawed Waddell-Aylward BPS model (Stewart, 2016a; Shakespeare et al., 2017). The WCA is identified by the DWP as a non-­ medical functional assessment, which justifies the fact that regardless of diagnosis, prognosis or consultant medical opinion, the ESA claimant can be declared ‘fit for work’ by the DWP, which has led to many unnecessary deaths when, as I term it, ‘killed by the State’ (Stewart 2018a; Elward, 2016). Elward (2016, p. 26) argues: It’s alarming that the welfare system deliberately exploits people’s vulnerabilities to ­enhance social control. Claimants’ income is around the destitution threshold, meaning slight financial alterations make necessities unattainable (Fitzpatrick et al., 2016). It is common for claimants to have inadequate clothing, heat or light in homes, or to fall behind on bills (CAS, 2014). Food and hunger are constant sources of stress. Many claimants rely on food banks for survival, and the stigmatisation associated with this contributes to anxiety, as the embarrassment of being poor and reliant on others for support adds to feelings of helplessness. Many take out debt, joining the one million households dependent on pay day loan companies to cover basic expenditures. These economic hardships, and the culmination of stressful factors are triggering unprecedented levels of depression, anxiety and self-harm. (Clifton, 2013; Barnes et al., 2016) 45

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In terms of explaining how being declared ‘fit for work’ by the DWP can lead to being ‘killed by the State’ (Stewart, 2018a) as I argue, Elward (2016, p. 30) explains: WCA processes could arguably be viewed as democide, as some claimants are, in ­essence, killed by the state or officials acting on their behalf (Totten and Bartrop, 2008). This means that Maximus are also culpable because they are acting according to DWP policy which is proven to cause death with the approval of state officials. These deaths can be considered democides as the government is purposely permitting and/or creating conditions which systematically produce death. Moreover, WCA features share many genocidal traits: Targeted groups like the ill and disabled, suffer gross mental and physical harm. The State has also deliberately inflicted physical destitution on a group which fails to align with their ideology. (Simon, 2007; Nersessian, 2010) The SCBIB research identified the use of sanctions to remove all access to funds to ­incentivise claimant compliance (Waddell & Aylward, 2005, p. 164). This arguably a­ llowed ‘preventable harm’ by the State to creep into disabled people’s lives, using the discredited Waddell-­Aylward BPS assessment model (Shakespeare et al., 2017) for the WCA, plus sanctions, which were known to cause enforced starvation by limiting the amount disabled people could spend on food (Gentleman, 2014a). According to Shakespeare et al. (2017, p. 24): The Waddell-Aylward BPS [model] has remained largely unexamined within academic literature, although it has not escaped critique by disability activists (e.g. Jolly, 2012; Berger n.d., Lostheskold 2012; Stewart 2013). In this paper we build on these political challenges with an academic analysis of the model and the evidence used to justify it. We outline the chief features of the Waddell-Aylward BPS [model] and argue that, contrary to Lord Freud’s comments above, there is no coherent theory or evidence behind this model. We have carefully reviewed claims in the Waddell and Aylward publications; compared these with the accepted scientific literature; and checked their original sources, revealing a cavalier approach to scientific literature. In conclusion, we will briefly outline the influence of the Waddell-Aylward BPS [model] on contemporary British social policy, and the consequent effects on disabled people.

Deaths, despair and preventable harm In 2005 there was a total of 39% of IB claimants in receipt of the benefit for a mental health issue, which was just under one million people (Rutherford, 2007, p. 51). Since that time, politicians of both main parties have prioritised the reduction of claimant numbers by one million people, suggesting that mental health was of little significance other than a drain on resources (Stewart, 2018b). The welfare of the sick and disabled community in need of State financial support would plummet with the election of the Coalition government in 2010, and the appointment of Iain Duncan Smith as the Secretary of State for Work and Pensions. The Thatcher legacy, which was the eventual removal of the welfare state (Travis, 2012), could not begin as long as there was a perceived psychological security of the welfare state within society. The expectation that the funding of National Insurance via wages meant that the State would protect people should unemployment or long-term illness impact on their lives was imbedded in society. In order to remove the welfare state, it was first necessary to destroy this public psychological security. Daguerre and Etherington (2014, p. 6) identified that: 46

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One of the main goals of welfare reform and especially benefit sanctions is to deter the vast majority of the working age population from making claims on social security, with means tested benefits being the main targets for spending cuts. There is thus a political need to increase the stigma attached to benefit claim. It is in this context that social ­security is increasingly portrayed as an illegitimate burden on society as a whole. The Secretary of State for Work and Pensions, Iain Duncan Smith, spent six years ­successfully manipulating the British public in order to discredit the welfare state, by demonising ­claimants of long-term sickness benefit aided by the tabloid press (Stewart, 2017c). They used banner headlines claiming, for example, that 75% of disability benefit claimants were ‘skiving’ (Hall, 2011), as Iain Duncan Smith terrorised the sick and disabled community with many false and exaggerated claims (Gentleman, 2014b). In 2014, the actual figure for identified fake disability benefit claims was 0.7% of the ­entire welfare budget, with DWP errors listed as costing 2% of the budget (DWP, 2014/2015, p.  6). The DWP’s demonstrated incompetence costs three times more than any fake claims. Almost single-handedly Iain Duncan Smith reinvigorated the superior language of ‘deservingness’ (Daguerre & Etherington, 2014), and he actually presumed to talk about moral character whilst knowingly frightening those least able to fight back when using his divide and rule rhetoric which impacted on public attitudes and behaviour (Stewart, 2017c). The distress created by repeated WCAs for conditions that can’t ever improve created a ­d ramatic negative impact on public mental health. Following a longitudinal ecological study, Barr et al. (2016, p. 344) concluded that relentlessly reassessing people on disability benefits, ‘was independently associated with an increase in suicides, self-reported mental health problems and increased antidepressant prescribing’. The research team highlighted the fact that the serious adverse consequences for mental health created by the use of the WCA, ‘could outweigh any benefits that arise from moving people off disability benefits’ (Barr et al., 2016, p. 343). The removal of the former psychological security of the UK welfare state meant that a significant increase in identified public mental health problems was inevitable (Barr et al., 2016). The DWP disregarded all academic research not commissioned by them, regardless of identified ‘preventable harm’ (Stewart, 2018c) demonstrated as being created by the cumulative impact of DWP policies of successive governments negatively impacting on the survival of many in the sick and disabled community (Stewart, 2017b). By disregarding diagnosis, claimants with profound illnesses can be dismissed and found ‘fit for work’ by the WCA, and refused ESA by the DWP. Despite having been provided with evidence as to the implications of forcing chronically ill people to search for work (Ryan, 2015), poorly trained DWP staff do little more than ‘rubber stamp’ the results of the WCA (Harrington, 2010), which are outsourced to the American corporate giant known as Maximus. Suicides directly linked to the WCA were always inevitable, as chronically ill people attempting to claim the ESA were increasingly coerced and intimidated by the DWP, ­especially following the election of the Conservative-led Coalition government in 2010. Coercion wasn’t difficult to achieve. For access to the ESA benefit the DWP disregard all medical opinion, disregard all claims that the chronically ill claimant can’t recover from their identified health condition, and send endless DWP letters demanding attendance for yet another WCA; with relentless threats in every letter that the ESA could be stopped and claimants sanctioned, resulting in no income at all, which guaranteed destitution in the very poor. Even the National Health Service (NHS) reported suicide figures, identifying 47

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that almost fifty percent of ESA claimants had attempted suicide at some point in their life (Pring, 2017), failed to influence the DWP to stop this identified ‘state crime by proxy’ (Stewart, 2017a) against those least able to protest. Pring (2017, paragraphs 1–3, 5, 9, 14) observed: ‘Shocking’ NHS statistics have revealed that almost half of the people claiming the main out-of-work disability benefit in England have attempted suicide at some point. The figures, showing rates of self-harm among claimants of employment and support allowance (ESA) were published in NHS Digital in September 2016, but have apparently never been reported to the media. Although only one in 15 adults (6.7 per cent) in the general population had ever made a suicide attempt, that rose to 43.2 per cent for ESA claimants, and as high as 47.1 per cent for female ESA claimants (…) The levels could now be even higher, because the survey was carried out three years ago, before the further series of social security cuts and reforms, including new cuts of nearly £30 a week to new claimants placed in the ESA work-related group that were implemented in April (…) Dr Jay Watts, a consultant clinical psychologist and member of the Alliance for Counselling and Psychotherapy, who uncovered the figures, said she had felt ‘shock and horror followed by, on reflection, an absence of surprise’ when she first saw them (…) ‘Being treated like a second-class citizen, being blamed for not being the ideal neoliberal subject, being denied the basic financial means to survive, being sanctioned for being too ill to make an appointment – these belittlements monopolise the internal world and the result is now often suicide.’

Department for Work and Pensions tyranny This identified Department for Work and Pensions (DWP) tyranny will continue (Stewart, 2018a). There is nothing to stop it as the UK moves with each passing year ever closer to resembling another American state, when ably assisted by Member of Parliament, Esther McVey. She’s enjoying her own perceived sense of power by regularly making misleading statements without consequences (Toynbee, 2018; Bloom, 2018; Bush, 2018) as the new Secretary of State for the DWP, having been well trained by Iain Duncan Smith when she was a DWP Minister during his term in office. The DWP has now actually warned disability charities who deliver the government’s new Work and Health Programme that they are not permitted to criticise Esther McVey or the Department, or they risk their government contracts (Pring, 2018). This intimidation demonstrates the confidence of the DWP to restrict criticism by some of those perhaps best placed to challenge the Department. Using the Waddell and Aylward (2005) BPS assessment model that disregards diagnosis, together with reforms to social policies that were destined to cause relentless preventable harm, the Coalition government succeeded where other UK governments had failed. They successfully destroyed what was once the psychological security of the UK welfare state, so the long-ago planned demolition of the UK welfare state could begin in earnest. Those in greatest need now live in fear of another brown envelope from the DWP (Garthwaite, 2014), demanding attendance for yet another dangerous and fatally flawed WCA (Stewart, 2018a), which the DWP’s own technical and medical experts had warned against adopting (Pring, 2015) due to the inevitable and very predictable negative impact on public mental health, which was eventually demonstrated by detailed research (Barr et al., 2016; Pring, 2017; ­Stewart, 2018b). Ryan (2015, paragraphs 3, 4, 8, 9) argued that: 48

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Death has become a part of Britain’s benefit system. Shredding the safety net – a mix of sanctions, defective ‘fit for work’ tests, and outright cuts to multiple services – has meant that benefit claimants are dying; through suicide, starvation, and even being crushed by a refuse lorry when a 17-week benefit sanction forced a man to scavenge in a bin for food. This morning, the government released mortality statistics – or rather, was forced to after several freedom of information requests that show that more than 80 people a month are dying after being declared ‘fit for work’. These are complex figures but early analysis points to two notable facts. First, that 2,380 people died between December 2011 and February 2014 shortly after being judged ‘fit for work’ and rejected for the sickness and disability benefit, the Employment and Support Allowance (ESA). We also know that 7,200 claimants died after being awarded ESA and being placed into the work-related activity group – by definition, people whom the government had judged were able to ‘prepare’ to get back to work (…) Today’s mortality statistics do not simply point to the death of disabled, poor, and ill people but of a system that was meant to protect them. Before our eyes the principle of a benefit system is being reduced from opportunity, respect, and solidarity to destitution, degradation and isolation. Six-point plans to avoid people on benefits killing themselves do not exist in a society that has hope for their lives. The welfare state was built on the idea of ‘the cradle to the grave’. Now for thousands, all they receive is help to that grave. The adoption of American social and labour market policies of benefit denial (Daguerre, 2004) has worked very well over the years, as each successive UK government since Thatcher has introduced additional social policies to resist funding welfare benefit. Without ethical approval (McKee, 2014) the 2010 Coalition government introduced additional austerity measures, which were guaranteed to cause more preventable harm (Duffy & Gillberg, 2018) and to add to the burden of the most vulnerable citizens in the UK. Duffy and Gillberg (2018, pp. 7, 9) argue: One shocking aspect of Austerity has been the severe impact on disabled people. The cumulative impact of the cuts on this group – who often need income supplements, additional housing and support – has been particularly severe. This is primarily because people are hit by cuts in housing, benefits and social care concurrently. (…) It is also important to note that, alongside the straightforward cuts in real income, many people now find themselves in a relationship with the state and its administrative systems that is hostile and harmful. It is not just that people are poorer, they also feel weaker, more insecure, or even under attack. While some may be able to interpret these experiences as functions of heartless or thoughtless government policies ‘personally’ – they begin to see themselves as worthless and undeserving. The vicious rhetoric which is used to justify regressive policies works to both undermine the person’s sense of self-worth and to encourage hate crime by others, who follow through on the scapegoating policies of their political leaders. To guarantee that there would be no turning back, the Coalition government introduced a catalogue of welfare reforms with the 2012 Welfare Reform Act (WRA, 2012), which were guaranteed to transform various welfare benefits which had previously supported the needs of chronically ill and disabled people, thus making them much more difficult to access. This guaranteed that whatever was once the psychological security of the welfare state 49

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would finally be destroyed completely, as no welfare benefit is now guaranteed regardless of identified need, which is resisted by the DWP (DWP, 2015a; Thomas, 2016). Thomas (2016, p. 383) states: The most vulnerable people in society are paying a high price for the political ideology of neoliberalism, some with their lives. Suicides and deaths are the tip of the iceberg of misery and suffering on an unimaginable scale experienced by those who are physically or mentally unfit for work, as the government implements an increasingly punitive and authoritarian regime against benefit claimants. Vulnerable people are left destitute by sanctions that suspend or end their benefits if they fail to comply with orders to attend ‘assessments’, ‘training courses’, or submit the required number of job applications. Whilst unaccountable foreign corporate giants such as Maximus are contracted to conduct the WCA for access to the ESA at huge costs to the public purse (Pring, 2016), it is the basic grade DWP administrators, known as Decision Makers, who decide the outcome for the chronically ill and disabled claimants. This administrative decision includes placing the claimants into an entitlement group despite the fact that Decision Makers have no medical training and, by their own admission, fail to comprehend the supporting medical evidence provided by claimants so they routinely ‘rubber stamp’ the WCA decision by the outsourced private contractor (Harrington, 2010, p. 50). Regardless of diagnosis, when found ‘fit for work’ by a WCA the ESA claimant will be refused access to ESA, instructed to claim the unemployment benefit known as Jobseekers Allowance and ordered to search for paid employment. Claimants who the DWP Decision Makers decide are capable of preparing to return to work within twelve months are placed in the Work Related Activity Group (WRAG), and those who are deemed to not be well enough to work are placed into the Support Group. Following the public reaction after the enforced publication of ESA mortality totals by the DWP in 2015 (DWP, 2015b), which provided ESA mortality totals between December 2011 to February 2014, the DWP had refused to publish updated ESA mortality totals ever since (DWP, 2016). However, following repeated Freedom of Information requests, the DWP reluctantly published more updated ESA mortality totals in August 2018 (Topple, 2018). The published data identified that from March 2014 to February 2017 over a hundred people per day died when claiming ESA (Preece, 2018). This included a total of 10,950 ESA claimants who died when in the WRAG, who Decision Makers had decided were capable of preparing to return to work but, significantly, the numbers of ESA claimants who died after being found ‘fit for work’ has still not been disclosed. Someone in authority should challenge why the DWP still resist publishing these significant updated ESA ­mortality totals? The WCA is used to assess ESA claimants but the same discredited (Shakespeare et al., 2017) and fatally flawed (Stewart, 2016a, Stewart, 2016c) Waddell and Aylward (2005) BPS model of assessment used for the WCA is also used for assessments of all other government funding for disabled people. The Disability Living Allowance (DLA) was awarded to disabled people as a contribution to the additional costs of living with a disability. It had different levels of awards but, when awarded the highest level for those with the greatest needs, DLA was the necessary evidence needed to access a leased vehicle via the Motability car service. Often adapted for the physical needs of the driver, the DLA award at the highest

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The impact of neoliberal politics

rate for movement was reallocated to Motability and the disabled driver benefitted from a new leased vehicle every three years. However, DLA was to be phased out and the replacement Personal Independence Payment (PIP) was introduced by the Coalition government in April 2013 (Wintour, 2013), to eventually replace DLA for disabled people with high needs aged 16–64. Only fifty percent of PIP claimants are successful with their first claim, prior to any appeal, and by April 2017 fifty thousand disabled people had had their Motability car removed after failing to secure the necessary PIP award (Vale, 2017). The Waddell-Aylward BPS model of assessment is also used for the reviews of War Pensions which were awarded to disabled military veterans prior to 2005. Limiting pension increases for disabled veterans is shameful and a betrayal of the sacrifices of the British military forces (Oliphant, 2017; Stewart, 2017d). The next hurdle to hit the disabled community is the introduction of Universal Credit (UC), which is the scheme created by Iain Duncan Smith MP when assisted by David Freud, with the goal of replacing six separate benefits with one global benefit; to include the unemployment benefit known as Jobseekers Allowance and the ESA. UC is being gradually rolled out across the UK despite a large amount of opposition to the concept, with the Labour Party on record as planning to scrap UC when elected to government (BBC, 2018).

Unacceptable, unelected influence Neoliberal politics is so deep-rooted that Ministers judge everything only in cash terms, as demonstrated regularly by Lord David Freud when working in the DWP for six years on behalf of consecutive Coalition and Conservative governments, until his retirement from his Ministerial post in December 2016. Freud first attracted public attention as the former City banker appointed by the New Labour government in 2007 to conduct research relating to future welfare reforms. Commonly known as the ‘Freud Report’, ‘Reducing dependency, increasing opportunity: options for the future of welfare to work’ (Freud, 2007) was rapidly produced in only six weeks. The report was the template for the drastic future reduction in cost terms of the welfare state and the evolution of Universal Credit (UC). One of the many recommendations in the Freud Report was the use of the private sector to outsource assessments for claimants of disability benefits. The vast amount of needless suffering (­Stewart, 2018c) created by the adoption of the 2005 Waddell-Aylward BPS model of assessment, as used for the WCA, has been implemented by private contractors engaged with very lucrative contracts to conduct various disability assessments on behalf of the DWP. Freud (2007, pp. 1–2) claimed: The Department should develop a funding approach which will allow it to direct ­spending towards such groups, who have complex and demanding problems, in a more individualised way. Such programmes should be outsourced into the private and voluntary sector, giving them the incentive to improve performance. Jobcentre Plus, the Department’s one-stop shop benefit and job brokering arm, should concentrate on those closer to the labour market, for which standardised programmes have proved appropriate and successful. With the least advantaged in receipt of more individualised support, the rights and responsibilities of all benefit recipients should be brought more closely into line. These proposals should be thoroughly tested and piloted before implementation, to establish that the long-term relationship proposed between provider and client produces enhanced outcomes and better cost-effectiveness.

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Shortly after the publication of the Freud Report (2007), Danny Dorling identified that Freud had ‘got his numbers wrong’, had misinterpreted his own references and so the report conclusions were incorrect (Dorling, 2007). This academic challenge to the credibility of the Freud Report was overlooked by the DWP, who implemented all of Freud’s recommendations to remove as much funding as possible from those in greatest need (Stewart, 2018b). Following the adoption of the report (Freud, 2007) by the New Labour government Freud joined the Conservative Party, was appointed to the House of Lords in 2009 and ­became an unelected DWP Minister despite admitting that he ‘knows nothing about welfare’ (­Sylvester & Thomson, 2008), which he demonstrated in every policy he contributed towards, with the aim to reduce costs regardless of human consequences. Freud’s understanding of welfare was that it costs the State a lot of money. He demonstrated his contempt for disabled workers, whilst causing immense offence, by declaring that disabled workers were ‘not worth the full wage’ and should only be paid £2 per hour, since ‘they are not physically capable of producing the same level of work as able bodied workers’ (BBC, 2014). Prior to his hasty and unexpected resignation from government in December 2016, Freud had been closely involved in many of the DWP’s harsh reductions of support benefits for the disabled community. He was the architect of the controversial UC (Stewart, 2016), which is destined to replace six welfare benefits and is still being slowly rolled out across the UK, despite serious problems being identified with the system that have yet to be resolved (Butler, 2018). Extreme right-wing neoliberal politics demonstrates the ideological resistance to ­funding welfare benefits by the Conservative party, who claim that being in receipt of disability ­benefits makes the claimants less likely to look for work. This is the American influence of UK social policies that overshadows all UK welfare reforms for sick and disabled people (Stewart, 2016a; Daguerre & Etherington, 2014). The influence of the unelected Freud, his demonstrated unsuitability for his Ministerial post and his total failure to comprehend that disability can last a lifetime, was obvious from his very first comments. Stewart (2017c) noted: The danger for all chronically ill and disabled people dependent upon welfare funding for financial survival was apparent in some of the first reported words by David Freud, in his capacity as the appointed adviser to the New Labour government. A millionaire and former city banker with no political experience, Freud claimed in a press interview that he ‘couldn’t believe’ that anyone had been awarded a disability benefit for life. His total failure to conceive that many illnesses and disabilities are permanent, and disabled people can’t suddenly become able bodied at the demand of an unelected millionaire seemed to escape him. Due to Freud’s recommendations (2007), various foreign private contractors were ­contracted to conduct DWP assessments to resist funding disability benefits, with multi-million pound contracts funded by the taxpayer. Yet, official reports continue to demonstrate that ­outsourced contractors have failed to meet the required standards of the Department, the taxpayer and the claimant (CPA, 2016, p. 3) but continue to be awarded lucrative DWP contracts. The Conservative political rhetoric that welfare reforms were introduced to reduce welfare spending was used to successfully manipulate the public (Stewart, 2017c), whilst the costs of outsourcing the assessments added a huge financial burden to the DWP budget. Atos Healthcare was created as a subsidiary of Atos Corporation and were originally contracted by the DWP in 2008 to conduct the WCA, despite the fact that they were an IT company with no healthcare experience. Following relentless protests by the disabled community over ­several years, Atos Healthcare were to be replaced by the discredited American corporate 52

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giant Maximus to conduct the WCA from March 2015 (Wynne Jones, 2014), at a cost to the taxpayer of £579 million in 2016–2017 (Syal, 2016). Undeterred, Atos Healthcare changed its name to Independent Assessment Services and, despite recent past history when conducting the WCA, were contracted by the DWP, along with Capita, to conduct assessments for the new Personal Independence Payment (PIP), which replaced the Disability Living Allowance; these two companies were paid £255 million in 2017 to conduct the PIP assessments, which is an increase of £40 million per year (Osborne, 2018).

Conclusion Using neoliberal politics, which places ‘the market’ as the main priority, successive UK governments since Thatcher’s have worked towards the future demolition of the UK welfare state. It’s not an insignificant coincidence that the demolition of the UK welfare state was prioritised by Prime Ministers who were millionaires or richer with, presumably, little or no comprehension of need. By definition, people claiming DWP financial support are those in greatest need. The chronically ill and disabled community in particular made very easy targets for right-leaning governments intent on reducing government debt, regardless of human consequences. Chronically ill and disabled ESA claimants rapidly became the human casualties of the harsh austerity measures adopted in 2010 by the Coalition government, and ongoing ever since. Other than the ideology of neoliberalism, there is no possible moral or ethical justification for disregarding diagnosis and prognosis simply to restrict benefit funding, or for outsourcing the assessments of chronically ill and disabled people to the private sector whose only goal is ‘Cash Not Care’ (Stewart, 2016a, 2016c, 2017c, 2018b).

References American Association for Justice (AAJ). (2008). The ten worst insurance companies in ­A merica. Retrieved from https://www.justice.org/sites/default/files/file-pdfuploads/AAJ_Report_­TenWorst InsuranceCompanies_FINAL on 9 October 2018. Aylward, M., & LoCascio, J. J. (1995). Problems in the assessment of psychosomatic conditions in social security benefits and related commercial schemes. Journal of Psychosomatic Research 39(6), 755–765. Barr, B., Taylor-Robinson, D., Stuckler, D., Loopstra, R., Reeves, A., & Whitehead, M. (2016). ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Journal of Epidemiol and Community Health 70, 339–345. BBC News (2014). Lord Freud: disabled people ‘not worth full wage’. BBC News, 7 October 2014. ­Retrieved from https://www.bbc.co.uk/news/av/uk-politics-29631573/lord-freud-disabled-­ people-not-worth-full-wage on 9 October 2018. BBC News (2018). Universal Credit has to go, says John McDonnell. BBC News, 7 October 2018. Retrieved from https://www.bbc.co.uk/news/uk-politics-45777815 on 9 October 2018. Bloom, D. (2018). Tory Esther McVey suggests her own party’s benefit cuts are ‘fake news’ in shameless conference speech. Mirror, 1 October 2018. Bush, B. (2018). Esther McVey may survive the NAO’s rebuke on Universal Credit, but she shouldn’t. New Statesman, 4 July 2018. Butler, P. (2018). Universal Credit: what is it and what exactly is wrong with it? The Guardian, 25 ­January 2018. Committee of Public Accounts (CPA). (2016). Contracted out health and disability assessments. House of Commons Committee of Public Accounts. Thirty-third report of session 2015–2016. London: House of Commons. COVER. (2004). UnumProvident teams up with Cardiff University. Retrieved from https://www.­ covermagazine.co.uk/cover/news/2151231/unumprovident-teams-cardiff-university on 9 October 2018. Daguerre, A. (2004). Importing workfare: policy transfer of social and labour market policies from the USA to Britain under New Labour. Social Policy & Administration 38(1), 41–56.

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Stewart Daguerre, A., & Etherington, D. (2014). Workfare in 21st century Britain. The erosion of rights to social assistance. Middlesex University. Retrieved from http://eprints.mdx.ac.uk/15825/ on 9 October 2018. Department for Work and Pensions (DWP). (2006). A New Deal for Welfare: Empowering People to Work. David Freud. London: The Stationary Office. Department for Work and Pensions (DWP). (2014/2015). Fraud and Error in the Benefit System: 2014/15 Biannual National Statistics, Great Britain. Retrieved from https://assets.publishing.­ service.gov.uk/government/uploads/system/uploads/attachment data/file/473968/fraud-and-­ error-stats-release-fy-2014–15.pdf on 9 October 2018. Department for Work and Pensions (DWP). (2015a). 2010–2015 Government Policy: Welfare Reform Policy Paper. Retrieved from https://www.gov.uk/government/publications/2010-to-2015-­governmentpolicy-welfare-reform/2010-to-2015-government-policy-welfare-reform on 10 O ­ ctober 2018. Department for Work and Pensions (DWP). (2015b). Mortality statistics: employment and support allowance, incapacity benefit or severe disablement allowance. Sheffield: DWP. Retrieved from https://assets. publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/459106/ mortality-statistics-esa-ib-sda.pdf on 10 October 2018. Department for Work and Pensions (DWP). (2016). Social Security Written Question 41684, 4 July 2016. Retrieved from https://www.parliament.uk/business/publications/written-questions-­a nswersstatements/written-question/Commons/2016-07-04/41684/ on 10 October 2018. Dorling, D. (2007). Guest Editorial: The Real Mental Health Bill. Journal of Public Mental Health 6(3), 6–13. Duffy, S., & Gillberg, C. (2018). Extreme poverty in a time of austerity. Submission to UN Special Rapporteur on Extreme Poverty and Human Rights. The Centre for Welfare Reform. Retrieved from https://www.centreforwelfarereform.org/uploads/attachment/620/extreme-poverty-in-a-timeof-­austerity.pdf on 10 October 2018 Elward, L. R. (2016). Corporate welfare crime: two case studies in state corporate crime. Thesis for Master of Arts Social Policy, Liverpool Hope University. Retrieved from https:// www.­researchgate.net/publication/311683866_Corporate_Welfare_Crime_Two_Case_Studies_ in_State-­Corporate_Harm on 12 July 2019. Freud, D. (2007). Reducing Dependency, Increasing Opportunity: Options for the Future of Welfare of Work. London: Crown Copyright. Garthwaite, K. (2014). Fear of the brown envelope: exploring welfare reform with long-term sickness benefits recipients. Social Policy & Administration 48(7), 782–798. Gentleman, A. (2014a). Vulnerable man starved to death after benefits were cut. The Guardian, 24 February 2014. Gentleman A. (2014b). DLA reform: coalition is exaggerating benefit fraud for its own benefit. The Guardian, 14 May 2014. Giroux, H. (2018). Neoliberal fascism and the echoes of history. Truthdig, 2nd August 2018. Retrieved from https://www.truthdig.com/articles/neoliberal-fascism-and-the-echoes-of-history/ ­ ctober 2018. on 9 O Hall, M. (2011). 75% on sick are skiving. The Express, 26 January 2011. Halligan, P. W., Bass, C., & Oakley, D. A. (2003). Malingering and Illness Deception. Oxford: Oxford University Press. Harrington, M. (2010). An Independent Review of the Work Capability Assessment, Year 1. London: Crown Publishing. Jolly, D. (2012). A Tale of Two Models: Disabled People vs Unum, Atos, Government and Disability Charities. DPAC. Retrieved from https://dpac.uk.net/2012/04/a-tale-of-two-models-disabled-people-vsunum-atos-government-and-disability-charities-debbie-jolly/ on 9 October 2018. Langbein, J. H. (2007). Trust Law as Regulatory Law: The Unum/Provident Scandal and Judicial Review of Benefit Denials under ERISA. Nw. UL Rev. 101, 1315. McChesney, R. W. (1988). Introduction to Profit over People by Noam Chomsky. New York: Seven Stories Press. McKee, M. (2014). Austerity. A failed experiment on the people. A talk with academics in New ­Zealand. Retrieved from https://www.youtube.com/watch?v=G7Fd-uBRPqY on 9 October 2018. McRuer, R. (2018). Crip Times: Disability, Globalization, and Resistance. New York: NYU Press. Monbiot, G. (2016). Neoliberalism – the ideology at the root of all our problems. The Guardian, 15 April 2016.

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The impact of neoliberal politics Oliphant, V. (2017). Veterans Disgrace: MPs get bigger payrise than any army heroes in ‘Betrayal’. The Express, 27 February 2017. Osborne, S. (2018). Government spending on private firms carrying out ‘brutal’ disability benefit assessments soared by £40m in a year. The Independent, 5 February 2018. Preece, S. (2018). DWP forced to admit more than 111,000 benefit deaths. Welfare Weekly (2018). Retrieved from https://welfareweekly.com/dwp-forced-to-admit-more-than-111000-benefitdeaths/ on 9 October 2018. Pring, J. (2015). Ruthless’ DWP ‘forced through WCA despite knowing of harm. Disability News ­Service, 11 December 2015. Retrieved from https://www.disabilitynewsservice.com/ruthless-dwpforced-through-wca-despite-knowing-of-harm/ on 9 October 2018. Pring, J. (2016). Taxpayers ‘left to foot bill for DWP’s assessment failures’ as costs set to double. ­D isability News Service, 8 January 2016. Retrieved from https://www.disabilitynewsservice.com/taxpayersleft-to-foot-bill-for-dwps-assessment-failures-as-costs-set-to-double/ on 9 October 2018. Pring, J. (2017). ‘Shocking’ NHS stats show nearly half ESA claimants have attempted suicide. Disability News Service, 30 November 2017. Retrieved from https://www.disabilitynewsservice.com/ shocking-nhs-stats-show-nearly-half-esa-claimants-have-attempted-suicide/ on 9 October 2018. Pring, J. (2018). Charities delivering DWP’s work programme ‘must promise not to attack McVey’. Disability News Service, 19 April, 2018. Retrieved from https://www.disabilitynewsservice.com/ charities-delivering-dwps-work-programme-must-promise-not-to-attack-mcvey/ on 9 October 2018. Ryan, F. (2015). Death has become a part of Britain’s benefits system. The Guardian, 27 August 2015. Rutherford, J. (2007). New Labour, the market state, and the end of welfare. Soundings 36(36), 40–55. Scott-Samuel, A., Bambra, C., Collins, C., Hunter, D. J., McCartney, G., & Smith, K. (2014). The impact of Thatcherism on health and well-being in Britain. International Journal of Health Services 44(1), 53–71. Shakespeare, T., Watson, N., & Alghaib, O. A. (2017). Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability. Critical Social Policy 37(1), 22–41. Stewart, H. (2016). Architect of universal credit Lord Freud retires from government. The Guardian, 1 December 2016. Stewart, M. (2016a). Cash Not Care: The Planned Demolition of the UK Welfare State. London: New Generation Publishing. Stewart, M. (2016b). American influenced punitive UK welfare reforms. Retrieved from http://www.­ mostewartresearch.co.uk/wp-content/uploads/2018/03/American influenced-punitive-UK-­welfarereforms-May-2016.pdf on 9 October 2018. Stewart, M. (2016c) Cash Not Care – Mo Stewart book launch, London, October, 2016 (YouTube video). Retrieved from https://www.youtube.com/watch?v=sDEG4hecPqQ on 09 October 2018. Stewart, M. (2017a). State crime by proxy: corporate influence on state sanctioned social harm. Retrieved from http://www.mostewartresearch.co.uk/wp-content/uploads/2018/01/State-Crime-by-Proxy022017.pdf on 9 October 2018. Stewart, M. (2017b). The Human Cost of Welfare Reforms. Retrieved from http://www.researchgate. net/publication/321307547_THE_HUMAN_COST_OF_WELFARE_REFORMS on 9 October 2018. Stewart, M. (2017c). Demonising disabled people: public behaviour and attitudes during welfare reforms. Welfare Conditionality: sanctions, support and behaviour change. (Conference at University of York.) Retrieved from http://www.welfareconditionality.ac.uk/2017/07/demonising-disabled-people-public-­ behaviour-and-attitudes-during-welfare-reforms/ on 9 October 2018. Stewart, M (2017d). A Sense of Betrayal. Journal of Public Mental Health 16(1). Stewart, M. (2018a). Sick and disabled Brits killed by the state – crime without punishment. Welfare Weekly, 24 April 2018. Retrieved from http://welfareweekly.com/sick-and disabled-brits-killedby-the-state-crime-without-punishment/ on 9 October 2018. Stewart, M. (2018b). State Crime by Proxy Update: corporate influence on state sanctioned social harm. The Journal of Critical Psychology, Counselling and Psychotherapy Retrieved from https://www. mostewartresearch.co.uk/wp-content/uploads/2019/04/JCPCP-18-4-M-Stewartarticle.pdf on 9 October 2018. Stewart, M. (2018c). Preventable harm and the work capability assessment. The Centre for Welfare Reform. Retrieved from http://www.centreforwelfarereform.org/uploads/attachment/618/preventableharm-and-the-work-capability-assessment.pdf on 8 September 2018.

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Stewart Syal, R. (2016). Maximus miss fitness-to-work test targets despite spiralling costs. The Guardian, 8 January 2018. Sylvester, R., & Thomson, A. (2008) Welfare is in a mess, says adviser David Freud. The Telegraph, 2 February 2008. Thomas, P. (2016). Psycho politics, neoliberal governmentality and austerity. Self & Society 44(4), 382–393. Topple, S. (2018). The DWP was just forced to reveal that 100 benefit claimants a day have been dying on its watch. The Canary, 16 August 2018. Toynbee, P. (2018). Esther McVey has to go. Her downright lies are dangerous. The Guardian, 5 July 2018. Travis, A. (2012). Margaret Thatcher’s role in plan to dismantle welfare state revealed. The Guardian, 28 December 2012. Vale, Jon. (2017). 50,000 disabled people ‘have adapted vehicles removed after benefits assessment’. The Independent, 12 April 2017. Waddell, G., & Aylward, M. (2005). The Scientific And Conceptual Basis Of Incapacity Benefits. The UnumProvident Centre for Psychosocial and Disability Research. London: The Stationary Office. Welfare Reform Act (WRA). (2012). Retrieved from http://www.legislation.gov.uk/ukpga/2012/5/ contents/enacted/data.htm on 9 October 2018. Wikeley, N. (1995). The social security (incapacity for work) act 1994. The Modern Law Review 58(4), 523–533. Wintour, P. (2013). The day Britain changes: welfare reforms and coalition cuts take effect. The Guardian, 1 April 2013. Work and Pensions Select Committee (WPSC). (2006). Supplementary memorandum submitted by UnumProvident following the publication of the Welfare Reform Green Paper. Retrieved from http://­ publications.parliament.uk/pa/cm200506/cmselect/cmworpen/616/616we37.htm on 9 October 2018. Wynne Jones, R. (2014). Fears for disabled Brits as US firm takes over benefits assessments from Atos. The Mirror, 11 November 2014. Young, H. (2013). Margaret Thatcher left a dark legacy that has still not disappeared. The Guardian, 8 April 2013.

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2 ‘THESE DAYS ARE OURS’ Young disabled people’s experiences of activism and participation in social movements Miro Griffiths

Introduction Social movements and activism are considerable points of interest (Beckett, 2006b; Della Porta & Diani, 2015); they provide an opportunity to explore how the premise of disability is articulated from a basis of human and civil rights. The collective organisation of disabled people is well documented in historical and contemporary accounts. Media outlets (Pearson & Trevisan, 2015), art productions (Kuppers, 2014) and academic literature (Shakespeare, 1993; Campbell & Oliver, 1996; Williams-Findlay, 2011) document the trajectories taken by individuals and groups to create solidarity in order to achieve disabled people’s emancipation. The establishment of a United Kingdom (UK) Disabled People’s Movement (DPM)1 is not without difficulty; societal barriers that prevent or attitudes that undermine disabled people’s participation are extensive, with individuals restricted from or denied access to exploring aspects of citizenship and political engagement. The barriers emerge from a plethora of reasons, including how Social Security and assistance schemes fail to accommodate needs for people to explore and engage with social movements; similarly, the built environment and policies that ultimately sabotage inclusive practices, such as the, ‘removal of the bias towards inclusive education’ (Runswick-Cole, 2011), combine to hinder the effectiveness of the DPM. The DPM attempts to address disabled people’s reduced life chances by focusing on the causes marginalisation and isolation. Nevertheless, the DPM continues to build solidarity among disabled people by scrutinising the dominant political ideology and economic decisions that perpetuate the notion of ‘ableism’ (Campbell, 2009). This term is a network of social practices, processes and deep-rooted beliefs that aims to produce an ‘ideal’ being. This reinforcement of the perfect, essential and functioning human relegates disability to an inferior level. Existing social structures promote and accommodate this norm, whilst disabled people encounter discriminatory practices and reduced living standards. The Movement also offers an opportunity to develop and strengthen a culture of pride in disability identity, thus demonstrating disabled people’s passion to create change. Within social movement studies, the question of diversity and representation requires constant investigation and analysis. The DPM, too, has come under examination. Influential scholars and activists have questioned how the Movement seeks to incorporate the views 57

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and actions from a broad range of experiences (Spandler, Anderson & Sapey, 2015; CarlingJenkins, 2014). This chapter explores how young disabled people experience, perceive and interact with the DPM. To achieve this, it explores the power dynamics within and surrounding social movements; furthermore, it focuses attention on the wider discourses, political ideologies and power structures that both prevent and deter young disabled people from participating in and being included in the Movement. Social movements cannot exist externally to the social, economic and political happenings within society. Whilst the hierarchy within the DPM must of course be reviewed and usefully deconstructed, the primary focus of such an examination should be on ensuring that individuals are presented with the opportunities to follow their interests in engaging with social movements, activism and protest. Finally, the chapter draws attention to the visions for the future and how archiving the DPM is necessary for the Movement to be sustainable and effective. The chapter begins by explaining the methodology of the research study,

Methods and methodology In order for research to produce meaningful outcomes, which are equally transformative for the DPM and, it is hoped, empowering for activists, it selected participant groups: young disabled people and ‘established figures’ within the UK DPM. The definition of ‘young person’ is a contentious issue; in the UK, organisations and government policy have a tendency to frame youth between the ages 18–25, whilst in Europe, various research institutions and social affairs committees have widened the age range from 18–35. Taking this into consideration, I defined a young person as an individual aged 18–30 (LSE, 2003). For the group consisting of established members, they were required to consider themselves – or to be considered by others – as an influential/established member of the UK DPM. Participants were selected via the purposive and snowballing sampling (Bryman, 2015). Ethics approval was given by the Research Ethics Committee at the Liverpool John Moores University and seventeen individuals were interviewed between May and September 2016. Participants were not required to articulate the precise nature of their impairment, health condition or non-neurotypicality; all identified as a disabled person. The questions were formulated using the social model of disability as a foundational device for describing disability as a form of social oppression. Also, it followed a similar line of questioning by utilising the ‘tool for analysis of social movements’ developed by Carling-Jenkins (2014). This identifies seven key features that require further investigation: vision, voices, events, context and individual, group and public consciousness. Following an analysis of the interviews conducted with disabled people (eleven young disabled people engaged in the DPM and six established figures within the Movement), this chapter outlines three key themes. Firstly, there is an exploration of how the notion of youth is conceptualised and affects people’s interaction with DPM; secondly, structural aspects of the Movement are reviewed, with particular interest in the premise of ‘interlinking movements’ coexisting to address the issue of disablement and how ­relationships and alliances are fostered and developed. Finally, there is the archiving process that, currently, young disabled people find difficulty in accessing. This leads to young disabled people’s isolation and pressure to remember certain amounts of knowledge regarding disability activism in order to participate within the Movement. I address each theme in turn. 58

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Young disabled people’s relationship to the movement Membership of the DPM – conceptualisation of youth I found that the current, dominant conceptualisation of youth represents young people as passive, dependent upon the ideas of older, established figures, and with two particular purposes. Firstly, to learn from existing figures, with the expectation of continuing their work and legacy. Secondly, to become involved only in discussions and activities pertaining to youth-related issues and agendas. This perception creates frustration amongst young people, who experience a sense of marginalisation by certain members and organisations within the DPM and the latter’s suggestion that the young are naive about the various discourses surrounding disability politics. The concept of youth is reinforced through micro-interactions between individuals and at the macro-level through the provision of services and policy direction. A reluctance by young disabled people to adopt and promote social model thinking is a root cause of the restrictions placed upon them, to participate in and interact with the DPM. These findings suggest that the process of becoming a member of the Movement necessitates opportunities to assess and explore the principles underlying the social model of disability (Oliver, 2013). While none of the young participants rejected the social model, they did want the resources and support to take control of their own learning and awareness process. It is useful to consider how the definition of ‘youth’ affords an extensive range of explanations, depending upon the approach taken to conceptualise young people’s existence, capacity and actions within the social world. According to Jenks (2005), realist approaches have sought to view children and young people as passive future-beings, capable of absorbing the diverse messages provided by established individuals and infrastructures – such as parents, educators and the mechanisms of consumerist culture. This was also found by Slater (2015) who concluded that conceptualisations of young people in contemporary Western society tend to promote young people as incomplete adults. Regina, a young disabled activist, concurs: I think some groups or organisations are particularly uninviting and unwelcoming to young people. I think more to do with lack of experience than age – but of course the two come hand in hand. But then again, young people who have a lot of experience may feel they have the same experiences as I have. I went to an event back in the summer with three disabled friends. All four of us were under 24 at the time. And I felt like we stuck out. Everyone was much older than us, we were the youngest there by far. A few individuals did make the effort to speak to us, but I did feel like we were very much outsiders. She explains that young people, as individuals within the wider social world, are perceived as compliant recipients of social forces and as responsible people-in-waiting (Alldred & David, 2007; Alldred & Fox, 2017). Firstly, as young disabled people rely upon government policy and practice to navigate and access daily living, their perceptions of themselves and wider understanding of young people’s position and status within society becomes carved into particular, intrinsic aspects. These are reflective of dominant narratives associated with the service provision and objectification of the body by professionals. Secondly, the interview indicates that young disabled people are typically involved in discussions and activities that 59

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focus or require a view on their experience as a young person and restricts their input on matters that do not require a youth perspective. Jukie, one of the established members, explained how the influence of neoliberal capitalist ideals with promotion of consumerism and leisure consumption has affected young disabled people’s explanation for the causes of disabling barriers within society. She argued that their broad, ever-changing relationship with the economy, in which they can be supported to access mainstream services and receive support from the State, results in a reluctance to ­challenge or focus on the economic events that have led to this point. However, it may be argued that the premise of reluctance is interpreted as a negative portrayal of an apathetic youth generation which, as Slater (2015) suggests, legitimises the need for an ‘adult’ generation to take control and ‘show the light’. Jukie outlines: I think it’s created a massive schism right now, between those people who were raised on a kind of capitalist ethos if you like, so they would be the ones that achieve much more, much further, long before the rest of us who are raised with the more socialist background… We had a very different education and a lot of the younger people in the movement who have bought into the kind of celebrity culture that is pumped through our TV screens, pumped through magazines and digitally at every aspect, is all saying, yeah, you do it for yourself… There’s a sense of this, I’m all right Jack, pull up the ladder. There’s very little, so you bring somebody on, so actually this is about connection, this is about don’t stand and shout over the sun. You turn round and make sure the sun shines on those beside you. At this point, the significance of lived experience remains paramount. Still, it needs to be utilised in a way that challenges the existing relations throughout the social world that produce aspects of marginalisation and inequity. The relations between the individual and state are an ever-changing system, different from the agendas and demands of the DPM. For example, if young disabled people are referencing choice and control in response to the State/citizen relationship (Beckett, 2006a; Beckett, 2006b), which effectively drifts into competing discourses associated with citizens of the State and customers of the market, this can be interpreted as a substantial challenge for established members. This is outlined in Jukie’s comment as they are focusing on political subjectivity and/or revolutionary ideals associated with the destruction of capitalism. Effectively, we are left with young disabled people’s being perceived as active yet misguided, passive and in need of being taught or disposable when matters ‘without a youth aspect’ take precedence. It is suggested the point raised earlier by Regina, i.e., that age difference plays a part, is a consequence of the continual cascade of events comprising neoliberal expectations placed upon young people. This section provided an initial introduction to how this concept of youth affects young disabled people’s engagement with the DPM, as well as the way in which established members articulate and define the purpose of young disabled people’s involvement. Next, I turn to a presentation of the findings of structural aspects of the DPM and how they affect youth.

Organisational aspects of the DPM – interlinking movements When discussing the premise of a movement established by disabled people in order to campaign and advocate for disability rights, the terms ‘Disabled People’s Movement’ (DPM) and ‘Disability Rights Movement’(DRM) were used interchangeably by participants. 60

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There is a significant lack of research and analysis to determine whether a substantial difference exists between the two. The literature of social movement studies argues that a rightsbased approach is necessary to challenge the power imbalances between different groups and their established territories. This may take the form of local organising, collaborative working to establish alliances and the expansion of networks to create different strategies. The DPM is viewed as an entity to re-energise the opposition to disabled people’s marginalisation, drawing attention to the exclusion and, in some circumstances, brutality experienced. The DPM is centred upon an overt platform of political activism but questions exist over a structured leadership framework and dormancy of some aspects of the Movement. The existence of two separate, interlinking movements was a discussion point throughout all interviews. It became apparent that competing discourses suggested how the Movement is divided such that it occupies two territories: one focusing on advancing disabled people’s rights, and the other to defend existing achievements gained through national and international legislation. As a result of the disparity between those who perceive the DPM as either a lobbyist or a protectionist group, participants explained there may not be one single description yet simultaneously be based upon differing interpretations. The DPM may be perceived as a campaigning group to advance or advocate for disabled people’s rights. Similarly, though, it operates as a support mechanism to promote aspects of pride, liberation, self-assertion and self-confidence (Morris, 1991; Corbett, 1994). Hillary, a young disabled person, explains the differences: I use the same interchangeably. If I was being very philosophical, I would potentially say the disability rights movement can be inclusive of allies, just by virtue of how it’s worded, whereas the ‘disabled people’s movement’ kind of implies that you have to identify as a disabled person in order to be part of it and actually very few people identify as a disabled person. So maybe ‘disability rights’ is a better term to use, because it opens up the movement to more people, but I use them both interchangeably. For many participants, it was important to acknowledge the existence of two separate movements, as they provided different territories to access depending upon the individual’s sense of identity, their understanding of activism and aspirations. The DPM is perceived as a sanctuary, a safe space for disabled people to reject the marginalisation and seek hope, guidance and support to achieve emancipation (Swain et al., 2004). This is problematic because of competing discourses that offer different ideas and perceptions, attempting to explain the experience of disablement or that recognise the existence of impairments and health conditions. Participants noted that if disabled people were ‘self-loathing’ about their experience of disability, this perception would be rejected by the DPM, because it would destabilise the activities by campaigners and activists, thus would frame disability within a biological and medical approach, ultimately problematising the individual and contradicting the assumed purpose of the Movement. Young participants were not critical of the two interlinking movements, providing an opportunity to further the inclusion of new members and advance emancipatory practices, yet concern was felt by the established participants. Most notably, those who identified as traditional materialist thinkers or Marxist followers challenged the prominence of a disability rights approach, as it weakened the demand to explain disablement through social structures. Furthermore, the DRM placed emphasis on the need to explore the intersectional aspects associated with identity and, potentially, to celebrate rights as a mechanism to address inequality. This is reflected in the disability studies scholarship, most notably from historical 61

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materialist perspectives, which argues that the demise and fragmentation of the DPM is a consequence of the over-reliance by disabled activists on addressing matters of social inclusion through utilising legislative frameworks (Barnes & Oliver, 2006). Robert, an established member, noted the criticism levelled towards the DPM, particularly as it struggles to appear flexible, to accommodate criticism and to organise resources so as to facilitate the emergence of new ideas. He states: Our fault for what we did, through failing to mobilise the wider community of disabled people, but more fundamentally the non-disabled community: we failed to achieve any significant inroads, and until you could bring in significant numbers of the wider community you are doomed. We enabled them to escape any real engagement by allowing ourselves to undermine the social model, be that key individuals or whole atmospheres or academics or whatever; so we have to accept that it is our fault. That doesn’t mean society isn’t doing it to us, but actually we played the key role, the key role in screwing ourselves […] Actually, you can make really radical stuff because the powers above don’t watch it and they don’t care what you do, so do something interesting, do something radical, do something challenging because they don’t even know you exist, so why are you still kind of trying to parody and mimic normality? They don’t care. Robert explains the failure of the DPM, and the significance of a DRM, is due to members’ demanding this recognition of self-worth and value rather than critiquing existing structures. From Robert’s perspective, the emergence and infiltration of neoliberal and capitalist ideals of citizenship, adulthood, work capability and responsibility means that nobody values themselves. These social structures are developed and implemented to strip away all aspects of dignity, value and recognition. At another point during the interview, he questions whether non-disabled people care enough about themselves to have any consideration for the demands and needs of disabled people. Robert concludes that a rights-based approach is meaningless. Rather, members of the DPM should determine why non-disabled people drive for a sense of self-worth and value – a focus that will reposition the status of disabled people and destabilise the structures of society. The position taken by Robert is a focal point within scholarship. Springer (2016) argues that neoliberalism has considerably devastated our social world and continues to affect all aspects of daily living. Political mobilisation and social movements must not adopt a strategy of ignorance, as the dominant forces benefiting from neoliberal influence can further obstruct any potential challenge or development of resistance (Graeber, 2009). Although the premise of neoliberalism is key to Robert’s analysis of the DPM, there is a danger in adopting such heterogeneous elements as constituting a method to describe the structural forces in operation. A new materialist perspective would seek to explain how a range of elements emanating from the realms of the physical, economic, semiotic and so on, interact and are assembled to produce a specified outcome (Latour, 2005). This way, Robert’s words are interpreted as a call to challenge, but also to explain, the fundamental basis of neoliberalism: it is the sporadic, fluctuating interactions, typically at a localised level, that produce the outcome referred to as neoliberalism. By challenging the interactions between social movement members, as well as the implementation of policy initiatives at the macro level, Robert argues that the movement is able to return to the original mandate of the DPM. Otherwise, the emergence of two separate movements will become more apparent. This critique of a disability rights approach was not shared by all established participants; others suggested the emergence of a DRM was intrinsically related to the rejection of a 62

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‘charity model’ explanation for disablement (Haegele & Hodge, 2016). Jukie, an established member of the DPM, recognised the disability rights approach as a natural progression. She argued that we had arrived at the point of two interlinking movements as a result of younger disabled people’s articulating demands different from those of established, influential figures within the DPM. To understand this further, Jukie reflected on the history of the Movement and noted historical events that were not too dissimilar to this discussion point: I think there are some people mistrustful and they feel like you’re letting the side down or something and like, the old guard are deeply suspicious of that kind of conversation. But it excites me and again, maybe this is just because of where I began in the movement, right at the schism between those of us who were, had acquired impairment and those who were born with impairment and the other splits in the movement between those with physical and sensory impairments and those of us who were lunatics and given psychiatric assessment, do you know what I mean? I do think those conversations are beginning to be had […] I think the old guard remain deeply suspicious. But I think bit by bit, you start to make changes because the discussions are happening, they’re happening in people’s living rooms. Jukie documents the collaborative actions of disabled people, including individuals with hereditary impairments, individuals who acquire notable health conditions and people who reclaim the language of ‘madness’ as an attempt to challenge the professionalised development of services (Beresford, 2000; McWade, Milton & Beresford, 2015). The opportunity to bring marginalised people together, from the disability arts forums, mental health survivor networks and the DPM, was not only an attempt to address solidarity; also, it led to the development of definitions to explain disability beyond physical impairments. A similar point is made by Graby (2012), who notes that autism is conceptualised as a social impairment and has led to the development of a social movement that is separate to the wider DPM. According to Jukie, social movements organised by individuals resisting mental health practices were not aware of the social model of disability and were suspicious of the advancements that could be made by politicising individual experiences. Throughout her activism, disability arts was a byproduct of the different social movements, occupied and controlled by disabled people, exploring cultural elements associated with disability. Whilst this was an attempt to create solidarity through exploring the intersectional aspects of identity, it also highlighted the emergence of separate social movements. The historical account of separate movements and exclusionary aspects of the DPM offered by Jukie was also reflected in contemporary examples given by the young participants. In discussion with Jeremy, a young participant who self-defines as having autism, a significant part of the interview was dedicated to exploring the separation between the DPM and the neurodiverse movement (Fitzgerald, 2017). Jeremy explains: I don’t think the autistic movements are as particularly as activist driven or seeking of change as perhaps people with disabilities at large are; mainly, I think a lot of milder forms of autism are still, you know, not necessarily eligible for things like welfare benefits in the first place. Anyway, so people do end up finding jobs and being supported by the family or something like that. But the second thing is the actual movements and how they formed can differ quite dramatically […] a lot of the autistic movement wasn’t actually formed by people with autism per se, but their parents, but a lot of the focus around autism is on growing up and how parents can adjust to that; I mean if you look 63

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at Autism Speaks, which is the largest autism-based organisation or charity, the activist element is more parents and sort of coming to terms of a child being or having autism and you know there is also those sort of movements set up looking at a cure to autism. Which doesn’t necessarily follow the principles of disability rights organisation so of course there is a split there. When asked if he identified as a member of a social movement, Jeremy stated his desire to belong to the DPM, but was unsure whether he would be perceived as a valid member. He was critical of the current autistic people’s movement, as it tended to be monopolised and controlled by parents with a focus on addressing discrimination through medicalised initiatives and demanding the involvement of professionalised practitioners and services to promote aspects of the vulnerability of everyday living. For Jeremy, the inclusion of autistic people within a Movement founded on the idea of disabled people’s taking action and controlling agendas requires one to identify as a disabled person; this is problematic, as interactions with education and welfare services may result in an individual’s not accessing support and, therefore, not being perceived as a disabled person. Barnes and Mercer (2005) argued the expansion of welfare provision, including its association with contemporary economic principles and concentrated power for professionals, has resulted in the eligibility criteria that provide a definitive answer as to whether or not somebody is disabled. Because the policy for personalisation has reinforced an individualistic account of disablement (Sapey, 2010), those unable to access services are not recognised as disabled. Jeremy believes this has an impact on young disabled people’s aspirations to join the DPM, as there is a reluctance to participate because their understanding of disability is territorialised by practitioners and structures encountered throughout their lives. The issue is further corroborated by young participants’ suggesting that the DPM is not inclusive. The majority of young participants interviewed distinguish between the DRM and DPM according to the social movements’ respective relationship to the State; the DRM was perceived as a lobbyist platform, aspiring to support the State in developing and implementing policy initiatives that are rooted in a rights-based approach. The DPM was described as, predominantly, a protest group, aligned with trade unions and certain positions along the political spectrum. Whilst the DPM prioritised aspects of welfare reform and social security, a rights-based movement was acknowledged as progressive, appearing receptive and inclusive, there to support members. As Mike, a young participant, suggested: Sometimes it gets confusing to me because I’ve also heard of the self-advocacy movement and the Disability Movement and the Disability Rights Movement, so it doesn’t all roll into one, if that makes sense? It sometimes gets confusing, which terminology to use. This section has focused on an exploration and critique of the DPM. It became apparent that participants believed the movement was founded on two fundamental pillars: the social model of disability, and a political ideology associated with the Left of the political spectrum. I now turn my attention to an issue that will have an impact upon the sustainability of the DPM.

Future considerations for the DPM – archiving activism This section outlines a specific point raised by participants as they discussed their priorities for the DPM’s future. Of particular note is the significance of archiving materials and records of activities and discussions to ensure that the Movement remains sustainable and effective 64

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as it improves disabled people’s living conditions. This is necessary to build on the legacy of existing and previous influential figures, stimulating debate and mobilising new members. This was highlighted by Rose, a young disabled activist: I think it would give those who […] maybe it takes time to come into the Movement, the chance to read the material and know […] and see that other people were indeed in history and are saying these things and the things you felt […] they needn’t be ashamed/scared, any of the things that they’ve felt, because other people have also been in similar positions, had similar experiences and felt them before and wrote about them before and lived to tell the tale I suppose. I think there’s also, there’s a political reason for archiving in that we aren’t always gonna be under the same government and the same politics that we are now. Literature is replete with examples of the political nature associated with archival practices (Millar, 2017; Procter, 2017), which has led to discussions regarding the manifestation, purpose and emerging relations during the process of creating activist archives. The significance of archiving activism should not be understated, especially as it provides opportunities to establish connections among certain community contingents. Further to support solidarity and to challenge the power relations that preserve the understanding of individualised and collective histories, social movements are required to promote community-based, dynamic and fluid projects that capture the narratives and identities by and for the activists affected. This last point is of particular relevance to the DPM, as it attempts to grapple with the notion of access and shared ownership; for the Movement, it is essential to utilise knowledge of its history and purpose in order to rethink current practice and to create or justify aspirations and a vision for disabled people’s emancipation. As outlined by Moore and Pell (2010), the nature of archives is to assemble collections so that communities are able to reflect on the dominant narratives and create a safe space within which to represent and redefine their own lived experiences. For the DPM, the intent to secure longterm preservation of materials and activities is affected by the accessibility and location of such archives. Whilst there are examples, albeit limited, of how the DPM has archived activity, two were frequently mentioned during the interviews. Firstly, the Leeds Disability Archive held at the University of Leeds in the UK, which provides free online resources of articles by disabled people and their organisations. In such a way, the archive documents key themes associated with the current and future debates surrounding disability. When participants were asked about their methodology for exploring information on the contemporary and historical workings of the DPM, many referenced the Leeds Archive. However, they also questioned the involvement of academic institutions to collect, disseminate and manage the history of disabled people’s writings. Their aim was to highlight the inaccessibility of academia and demonstrate the elitist values of higher education. For example, Richard, a young disabled participant, stated: So much of it is based around academia, which can be so inaccessible. I mean you can always kind of find those primers on disability, but – I’m sorry, on the social model of disability. For the microphone, [Richard] is googling ‘Limitations of the social model’. Ah! There we go. Development and critique of the social model of disability, implementing the social model of disability, social model of disability, outdated ideology, that looks like an interesting one but won’t be easily understandable! The second example refererred to the National Disability Arts Collection and Archive, a project to capture the heritage and history of the Disability Arts Movement. This Archive 65

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promotes and celebrates disabled people’s contributions to art, music, film and culture as a way of furthering social justice and human rights. Although hosted by a higher educational institution, the participants who highlighted this Archive described it as a resource made accessible to ensure disabled people realised their own heritage. Although archiving activism was merely one of numerous considerations proposed by the participants, it highlights a significant issue encountered by the DPM and other social movements: how to establish what an archive should be used for and how it affects individuals as they explore, reflect and connect with the ideas and practices emanating from the space occupied by social movements.

Discussion The findings illustrate that there is a suggestion of hierarchy amongst young disabled people involved in the DPM, implying that their position may be in competition with established members and their outlooks. Similarly, the involvement of young people is interpreted as potentially leading to the dilution of the principles and strategy of the DPM. As Giroux (2009) posits, the societal perception of young people adopts the principles of personal responsibility. The expansion of consumer choice, infiltration of the market within public services and the dismantling of pre-existing support systems have produced a narrative that advocates for young people to have freedom and choice – everything, including knowledge, becomes a commodity. For Giroux (2009) this means young people are dismissed by society as a generation requiring investment and guidance. Again, it must be stressed, the premise of battles between young disabled people and established members within the Movement derives from how young people are conceptualised and produced by the world around us. The relational character of the State and citizen, markets and public services, consumption and provision, leads young people desperately to preserve the economic productivity of their actions and ideas. By this, I mean that the actions and decisions taken to produce the able body and mind have generated the desire for the individual to witness the economic viability of their demands. As an example, some young participants explained that the purpose of participating within the DPM was to provide an argument for protecting or improving disabled people’s rights on the basis that disabled people become productive contributors to the existing economic frameworks. Thus, providing personal assistance will ensure that the individual may attain and remain in employment – ‘give us rights and we will become happy workers’! To take the approach of such disabled youth, implies a need to align the DPM with conforming to the ideals of a viable and productive body, which concludes with the body’s being owned by the investors. The perception then becomes that the individual, alongside the pursuit for economic prosperity, should focus on doing good to those who are assumed to ‘deserve’ it, albeit within a personal capacity (Barton, 1993). This has an impact upon the promotion of political activity by new social movement members – particularly young people – given that the societal expectation of youth is to, ‘Meet up to the ideal of an active, independent, neoliberal subject’ and, ultimately, become politically docile (Slater, 2015, p. 49). It is useful to return to contemporary disability studies literature, for example, the premise of the DisHuman Manifesto (Goodley, 2016; Goodley & Runswick-Cole, 2016) and its significance to the notion of ableism (Campbell, 2009) is pivotal to understanding young people’s positioning, inasmuch as the neoliberal lens advocates for valuing certain bodies over others and, as a result, relegates the supposedly useless and nonconforming bodies to being both a disruption and a hindrance. To further this understanding, Goodley (2016) explains 66

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disability as a form of collateral damage, incurred through actions that promote ablest ideals. How do we guard against this but ensure a democractic DPM where young people can also express such views but understand them historically – are archives the solution? The nature of archives creates an expectation that young disabled people should have a certain amount of knowledge pertaining to the debates and key issues affecting the DPM prior to their participation within activism. This raises the question as to whether the presence of archives and commitment to capture disabled people’s history reinforces elitist practices and behaviours within the Movement. This research argues there is a danger in that archives may no longer become a tool to support learning or raise awareness; rather, it takes the form of a benchmark that restricts participation and determines who is included within the DPM. Whilst this research argues that archiving social movements, particularly the DPM, is paramount for their continued existence and prominence within society, there is a need to understand and assess the existing relations between individuals who take responsibility to archive disabled people’s shared history. If opportunities are not provided to ensure there are accessible descriptions of activism, ones that reflect the various identities of those who take part or want to participate, then the importance of archiving will be lost. The higher educational approach asserts a trajectory that privileges the rationality, reason, and actions of a certain type of being. Drawing from the work of Braidotti (2013), who argues that the human depicts an abstract ideal and symbol of classical humanity, rooted in European values which can be exclusionary. Within the context of this research, there is concern that attempts to archive disabled people’s resistance and solidarity have inadvertently reinforced a specific vision for disabled people’s activism. Academia has captured and portrayed a vision of the DPM that largely isolates individuals that fail to resemble ‘the typical activist’ – a Eurocentric, white, middle-class individual with a physical impairment. This leaves certain cohorts within the Disabled People’s community, and newcomers to the DPM, abandoned. The purpose of archiving should not be only to describe the activities of disabled activists and their organisations. It is to highlight problems, gaps, and concerns that must be addressed to improve the effectiveness of the DPM. For example, whilst necessary to celebrate the revolutionary thinking of UPIAS (1976), it is equally important to consider why their ideas and mobilisation were exclusionary to those who had no physical impairments. This is part of the history of the DPM; it requires space to address the problems this caused, and how to ensure improvements are made within the present to ensure the Movement remains sustainable.

Conclusion This chapter has highlighted a number of key themes affecting young disabled people’s participation within the DPM in three areas: membership, the organisation of the Movement and archives that affect the future legacy. The themes should be read as challenges and barriers serving to restrict young disabled people’s access and overall inclusion within the DPM. I argue that young disabled people encounter challenges when attempting to engage with the DPM, particularly surrounding their involvement in the development and dissemination of key demands to realise disabled people’s emancipation, as well as opportunities for them to critique the social model of disability. Engagement with young disabled people should not rest on the assumption that young people are involved to offer a youth perspective; instead, their involvement is to contribute towards a discussion and strategy to realise what must be resisted and how social structures need to be organised to create a fairer and just society for all. Doing so may be facilitated by exploring the concept of futurology (Facer, 2013) and 67

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by providing safe spaces for young activists to consider what is possible and preferable in the future. Whilst the social model is contested, it would be disastrous for the Movement if it were abandoned. This chapter argues young disabled people are committed to the social model yet want opportunities to explore its significance and relevance in their lives. For this reason, I argue that the social model should be understood as an oppositional device, as outlined by Beckett and Campbell (2015). This is offered as a way forward to facilitate change, and to reinforce how important it is to include young disabled people in the organisation, demands, and sustainability of the DPM. My argument should be read as a direct statement to the Movement for it to address the challenges, so that young disabled people have an active and valued role within the DPM. I used the concept of futurology (Facer, 2013) to propose that young disabled people are supported to offer critical reflections on the future of disabled people’s social position. This approach, whilst focused towards the future, will initiate action in the present. It provides an opportunity for young disabled people, as active members of the DPM, to envision a preferred future that disrupts ableism and builds upon the existing demands and activities of the current membership. A commitment to futurology has the potential to challenge the contemporary understanding of youth, which is reflected currently in young disabled people’s access to and participation within the DPM. Rather than being perceived merely as ‘nearly adults’, their involvement is to explore alternative possibilities that will address existing disabling barriers. Such an approach reasserts the purpose of disability activism, demonstrating to newcomers why the DPM must employ strategies to resist current practices that perpetuate the marginalisation of disabled people. I argue that young disabled people are best placed to drive this narrative, as is reflected in the participants’ passion and commitment to challenge the practices that has led to their experiences of injustice. Should the DPM follow this approach, it necessitates action to address the challenges highlighted by young participants in this research – such as issues pertaining to accessing archived material. In order for members to debate and explore ideas about the future, there must be opportunities to reflect on the historical activities and contextualise these within the contemporary situation. Futurology has the power to disrupt the current neoliberal normative, disabling rhetoric and practices surrounding young disabled people. Yet, the DPM requires the use of safe spaces, if it is to commit to a futurologist approach, as this will ensure that young disabled people have the freedom and encouragement to explore their ideas about disabled people’s emancipation. Embracing futurology is complicated by how the social model of disability is understood within the DPM. Young participants were discouraged from debating the model, as it was assumed they would weaken its effectiveness as a tool to realise social change. The arguments to justify such discouragement also reinforce this contemporary understanding of youth, suggesting young disabled people are too naive and inexperienced to recognise the significance of the model. Thus, I suggest that if the DPM is committed to addressing the challenges outlined throughout the research then it should reconsider how the social model of disability is understood. Rather than as a tool, it would more usefully be understood as an oppositional device – as proposed by Beckett and Campbell (2015). As such, it would support activists and the DPM to create resistance practices and to focus on particular goals towards realising disabled people’s emancipation. This complements my argument for futurology, as the social model provides disabled activists with opportunities both to reflect upon the successes of the DPM and to identify the challenges ahead and strategies through which to address these. While Beckett and Campbell’s (2015) work has remained at a conceptual level, my research provides empirical data to reinforce the argument for understanding the social 68

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model as an oppositional device. This will require discussion as to how the social model may be used to promote the importance of disabled and non-disabled people establishing resistance-based practices, which means the DPM must consider how it can articulate a vision that addresses the marginalisation and discrimination encountered by many – not just those who identify as disabled people.

Note 1 Here, ‘the DPM’ is understood as a term to describe the collective political action of disabled people in Britain. The Movement is organised to challenge disabled people’s marginalisation, a phenomenon that emanates from the political, economic and cultural realms within the social world. It has a commitment to the social model of disability (UPIAS, 1976; Oliver, 2013) that provides the basis for the organisation of the Movement, despite certain concerns and reservations.

References Alldred, P. & David, M. (2007). Get Real About Sex: The Politics and Practice of Sex Education. London: Open University Press. Alldred, P. & Fox, N.J. (2017). Young bodies, power and resistance: a new materialist perspective. Journal of Youth Studies 20(9), 1161–1175. Barnes, C. & Mercer, G. (2005). Disability, work, and welfare: challenging the social exclusion of disabled people. Work, Employment and Society 19(3), 527–545. Barnes, C. & Oliver, M. (2006). Disability Politics And The Disability Movement In Britain: Where Did It All Go Wrong? Manchester: Coalition. Barton, L. (1993). The struggle for citizenship: the case of disabled people. Disability, Handicap & Society 8(3), 235–248. Beckett, A. E. (2006a). Citizenship and Vulnerability: Disability and Issues of Social and Political Engagement. London: Palgrave Macmillan. Beckett, A. E. (2006b). Understanding social movements: theorising the disability movement in conditions of late modernity. The Sociological Review 54(4), 734–752. Beckett, A. E. & Campbell, T. (2015). The social model of disability as an oppositional device. Disability & Society 30(2), 270–283. Beresford, P. (2000). What have madness and psychiatric system survivors got to do with disability and disability studies? Disability & Society 15(1), 167–172. Braidotti, R. (2013). The Posthuman. Cambridge: Polity Press. Bryman, A. (2015). Social Research Methods. Oxford: Oxford University Press Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan. Campbell, J. & Oliver, M. (1996). Disability Politics: Understanding Our Past, Changing Our Future. London: Routledge. Carling-Jenkins, R. (2014). Disability and Social Movements: Learning from Australian Experiences. Oxford: Taylor & Francis. Corbett, J. (1994) A proud label: exploring the relationship between disability politics and gay pride. Disability & Society 9(3), 343–357. Della Porta, D. & Diani, M. (2015). The Oxford Handbook of Social Movements. Oxford: Oxford University Press. Facer, K. (2013). The problem of the future and the possibilities of the present in education research. International Journal of Educational Research 61(0), 135–143. Fitzgerald, D. (2017). Tracing Autism: Uncertainty, Ambiguity, and the Affective Labor of Neuroscience. London: University of Washington Press. Giroux, H. (2009). Youth in a Suspect Society: Democracy or Disposability? New York: Palgrave Macmillan. Goodley, D. (2016). Disability Studies: An Interdisciplinary Introduction. London: SAGE Publications. Goodley, D. & Runswick-Cole, K. (2016). Becoming dishuman: thinking about the human through dis/ability. Discourse: Studies in the Cultural Politics of Education 37(1), 1–15.

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Griffiths Graby, S. (2012). To be or not to be disabled: autism, disablement and identity politics. Theorising normalcy and the mundane conference, 3rd International, Chester, UK, 27 June, 1–7. Graeber, D. (2009). Direct Action: An Ethnography. California: AK Press. Haegele, J. A. & Hodge, S. (2016). Disability Discourse: Overview and Critiques of the Medical and Social Models. Quest 68(2), 193–206. Jenks, C. (2005) Childhood. London: Routledge. Kuppers, P. (2014). Studying Disability Arts and Culture: An Introduction. New York: Palgrave Macmillan. Latour, B. (2005). Reassembling the Social: An Introduction to Actor-Network-Theory. Oxford: OUP. London School of Economics (LSE). (2013). Youth Participation in Democratic Life. London: LSE. McWade, B., Milton, D. & Beresford, P. (2015). Mad studies and neurodiversity: a dialogue. Disability & Society 30(2), 305–309. Millar, L.A. (2017). Archives: Principles and Practices. London: Facet Publishing. Moore, S. & Pell, S. (2010). Autonomous archives. International Journal of Heritage Studies 16(4–5), 255–268. Morris, J. (1991). Pride against Prejudice: Transforming Attitudes to Disability. Gabriola Island: New Society. Oliver, M. (2013). The social model of disability: thirty years on. Disability & Society 28(7), 1024–1026. Pearson, C. & Trevisan, F. (2015). Disability activism in the new media ecology: campaigning strategies in the digital era. Disability & Society 30(6), 924–940. Procter, M. (2017). Protecting rights, asserting professional identity. Archives and Records 38(2), 296–309. Runswick-Cole, K. (2011). Time to end the bias towards inclusive education? British Journal of Special Education 38(3), 112–119. Sapey, B. (2010). La politique du handicap: un modèle reposant sur l’autonomie individuelle. Informations Sociales 159(3), 128–137. Shakespeare, T. (1993). Disabled people’s self-organisation: a new social movement? Disability, Handicap & Society 8(3), 249–264. Slater, J. (2015). Youth and Disability: A Challenge to Mr Reasonable. London: Routledge. Spandler, H., Anderson, J. & Sapey, B. (2015). Madness, Distress and the Politics of Disablement. Bristol: Policy Press. Springer, S. (2016). Fuck Neoliberalism. ACME 15(2), 285–292. Swain, J., French, S., Barnes, C. & Thomas, C. (2004). Disabling Barriers, Enabling Environments. London: SAGE Publications. Union of the Physically Impaired Against Segregation (UPIAS). (1976). Fundamental Principles of Disability. London: UPIAS. Williams-Findlay, R. (2011). Lifting the lid on disabled people against cuts. Disability & Society 26(6), 773–778.

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3 THE LINKS BETWEEN MODELS AND THEORIES TO SOCIAL CHANGES AS SEEN AND UNDERSTOOD BY ACTIVISTS AND ACADEMICS What works? Joanne Sansome Introduction As a person who has been living with a disability, since birth, I have worked throughout my life within the area of disability and human rights, to create awareness of impairment and implement social changes. This work has primarily taken place in activism and academia, mainly emerging from the barriers and stereotypical perspectives I have encountered. This chapter draws on these dualistic lived experiences of activism and academia, to argue that it is legislative changes such as: The Disability Discrimination Act, (DDA) (DDA,1995); the signing and ratification of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006); and the UK Equality Act (2010), coupled with a drive for independent living that have made the most advances within society. This chapter gives an overview to determine what works, regarding what is seen and understood by activists and academics like myself, predominantly based within the United Kingdom (UK). The summary of the literature is reflexive in discussing the current forms and the needed future directions of disability activism from my perspectives as mentioned above: an activist within an NGO (Non-Government Organisation) and DPLO (Disabled People Led Organisation) as well as an academic and disabled researcher. My approach will illustrate what worked, discuss current activist practices and highlight how other academics like myself have engaged in communicating how activism happens and why it occurs. The chapter will conclude with a possible definition of activism and discussion of some challenges and possible future directions.

What works regarding what is seen and understood by activists and academics? The work of disability scholars, such as Barnes et al. (1999), charts the disability movement’s progression from the early days of the British Council of Disabled People (BCODP) (which I 71

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will discuss later) and the formation in 1972 of the Union of the Physically Impaired Against Segregation (UPIAS, 1974). UPIAS was an early disability rights and equality organisation, set up within the UK, led by disabled people. This disability organisation began in opposition to a medical model of disability that focused on a person’s impairment as something that needed to be medically fixed or rehabilitated. The medical model is also correlated to the ‘personal tragedy’ or charity approach that viewed only what a person could not do, thus rendering a person dependant on the care and attention of others; creating a victim of circumstance and negative stereotypical views about disability. People in Britain with disabilities argued that it was the medicalised and personal tragedy approaches of society that disempowered and disabled them. It was society that led to a person with impairments becoming oppressed or ‘disabled’, and therefore the solution must be social change. This new model of disability made a difference between having an impairment and the experience of disability, and it was called the social model of disability (Oliver, 1983, 1997, 2013). The social model of disability quickly became the foundational and unifying idea of the UK and global disability movement, alongside the concept of independent living. The social model was also instrumental regarding anti-discrimination legislation in the UK and global human rights legislation, by arguing for the removal of barriers and assurances of rights of citizens with disabilities. While the social model was foundational, I argue that since the 1980s and 1990s it has been human rights discourses that have been global unifiers of disability movements all over the world, leading to disability rights as an international issue. It can be argued that the disability movement has seen a shift towards human rights discourses and legislation more generally, and furthermore, as Degener (2014) argues, this is sometimes termed, or referred to, as the ‘Human Rights Model of Disability’. Vanhala (2011, p. 4) suggests that, ‘the disability rights movement provides an illuminating example of the power of the relationship between rights, ideas and collective identity.’ Thus, when political opportunities come together with legal opportunities, we are ‘presented with opportunities for competition, conflict, and cooperation with other actors in a multiorganizational field’ (Vanhala, 2011, p. 106). In the disability movement, it is human rights discourses, that have gained global ­influence. Such discourses have also ensured a move towards a politics of difference, which has resulted in more sensitive depictions of citizenship (i.e. such as persons with disabilities, women, ethnic minorities and so on) as well as their shared commonalities, utilising the lens of ‘multiple identities’ (Sandell & Dodds, 2010). From one’s lived experiences, this articulation of human rights discourse to ensure reflection of identity is a method widely used within the areas of disability equality and rights-based activism. For example, the decision of the former United States of America (USA) President Clinton to remove and replace the Franklin Delano Roosevelt memorial to reflect the twenty-first century’s post-civil rights values, opposed to one which reinforced the held negative social perceptions, at the time of Roosevelt’s presidency, is an example of the human rights model previously mentioned global influence and move towards politics of difference. As the chairman and president of the National Organisation on Disability stated, ‘This is by no means a nod to political correctness… it is the accurate portrayal of a man who used a wheelchair every day of his presidency’ (Deland, 2005, p. 9). While this statement may have been correct, as the 2015 documentary series ‘The Wheelchair President’ suggests, Roosevelt worked extremely hard to learn to stand and walk in braces and make sure that his wheelchair was rarely captured, to safeguard that his disability remained private. In the next section, I want to focus on why legal action was successful and explain why the separation between private and public spheres of disability, such as in Roosevelt’s time, no longer functions. 72

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Legal change and social action Legal or legislative changes and social action with regards to what academics and activists deem to work and understand about disability activism means each is offering differing opinions, to support or debate: topical issues, conceptual theories and terminology. These are all strengths of disability activism, notable for the focus on identities and minorities, but I want to focus on the links between legal change and social action. For example, one term that gathers much attention is ‘legal mobilisation’, which as Vanhala (2011, p. 5) explains, is a term that alludes to how ‘academics, activists and legal actors conceptualise the use of legal action by social movements’. Disabled activists advocate disability as a social movement with allies, practitioners and academics working in the fields of disability and other studies, and have utilised the rights-based approach to create fundamental global shifts regarding disability and society. These are exemplified via the independent living movement in the USA and the principles of the social model of disability in the UK (Trevisan, 2017, p. 9), which I have explained earlier. Disability activism, in the USA, has concentrated on ‘Making Human Rights a Reality’, ­consequently the title of a work by Hafner-Burton (2013), whereas, on reflection and in agreement with Trevisan (2017), such activism in the UK continues to link disability rights to a social model conception of disability. As stated earlier, such a model is different from the medical model which views impairment as ‘problems’ that medicine or rehabilitation can solve. Instead, a social model makes it explicit that while people have impairments, it is the society that disables and must change to accommodate disabilities. Disability activists have thus concentrated their work on legal claims to gain equality, shifting the medical concept of disability to that of political identity and thus social change. This approach towards politicising disability identity is associated with the previously mentioned global legal gains, such as the UK’s 1995 Disability Discrimination Act (DDA, 1995), the 2010 Equality Act and the UN’s CRPD (UN, 2006). In the above, we can track how the theoretical framework is widening and becoming more interdisciplinary and global, as disability activism becomes a political force. Drawing on the work of Meyer (2004), one example of this growing inter-disciplinary approach is the influence of political opportunity theory to understand social movements inclusive of disability and why they gain momentum or are unsuccessful in meeting their goals. Yet, political opportunity is only one factor used to determine the success and failure of social movements (McAdam et al., 1996). In this chapter, I will be primarily focusing on issues such as: values and beliefs; political context; activist coalitions and networks (Banaszak, 1996, p. 222). I will discuss each in turn, beginning with the values and beliefs of the movement and links to current political climate of austerity. I aim to illustrate how political activism and opportunities are shrinking. The importance of values and beliefs are reminiscent of my experience of a shared ­d isabling reality and the hope to change the future, which is an important aspect of disability unification when speaking as a collective voice. Drawing further from my experience of the importance of shared values and beliefs, when working with a collective that aims to be inclusive and representative of all persons with disabilities, funding is imperative. The political context of funding is often needed to enable full participation, to cover costs and ensure political involvement, as expenses can be overlooked but are crucial for accessible venues and transportation, personal care, interpreters and so on. Hence why, in the face of government cuts, funding is becoming a more prominent barrier for activists to engage in political action. More frequently, disabled activists are in unpaid (voluntary) positions, and we have to compete with the not-for-profit, charitable and disability sectors for increasingly 73

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smaller amounts of funding (due to the considerable global economic crisis). Often, the disability sector is comprised of organisations with a majority of persons in paid positions, not disclosing a disability or even having a disability, but seemingly representing (speaking for) those with disabilities who use their services. This type of representation endangers activists’ coalitions as political disability ­representation is not assured. Matters of disability representation as suggested by Trevisan (2017) and further supported by Karpf (2010; 2012) resonate with my experience of disability ­activism, being a ‘reactive, headline-grabbing strategy’ as opposed to being a ‘pro-active headline-making strategy’. Emerging groups tend to use online platforms to push existing issues within the political agenda, as opposed to re-setting the agenda with new issues representative of their struggles (Trevisan, 2018). Sandell and Dodds (2010) thus argue that disability activism and especially representation, is being intricately bound or reactive to the struggles pertaining to rights and equality. We see a shift from the medical model, and the social ‘cultural assumption…of dependency and tragedy’, to the ‘political demand that ­d isability be defined… in terms of social oppression, social relations and social barriers’ (Shakespeare, 2006, p. 31) to a human rights-based model of disability. Trevisan (2017, p. 15) argues that persons with disabilities use disability rights activism and advocacy as a means of democratic participation and legal inclusion in a system that ­otherwise primarily excludes the voices of citizens with disabilities. This argument is especially the case in the context of the UK’s 2012 Welfare Reform Act and cuts linked to austerity policies implemented since the economic crisis of 2008–2009. UK disability activism and advocacy engaged with how the agreements or bonds between government and citizen have been broken. For many years, there was a vision of social citizenship that ‘called for government action’ to enable the ‘realisation of socio-economic equality, with the development of the British Welfare state from the late 1940s onwards’ (Trevisan, 2017, p. 11), which ­d isability activists argue has been broken. This vision of social citizenship, while ensuring political changes (Trevisan, 2017) did focus mainly on the importance of socio-economic rights over political rights and civic responsibilities (Roche, 2002). It was also ‘strongly criticised by disabled scholars and activists’ in favour of the social model of disability (Trevisan, 2017, p. 15). Currently, activists within the UK, and globally, faced by austerity, argue that the social model has retreated and it is the human rights model that will ensure activism and their rights as citizens. While the social model was instrumental in gaining early political rights and entitlements, it lost a lot of its early theoretical and practical relevance for many disability scholars in the early 2000s before welfare cuts hit. Disability scholars have been critical of the conceptualisation and theory of disability offered via the social model and argued that it has served its purpose (Shakespeare & Watson, 2001; Tregaskis, 2002; Armer, 2004; Shakespeare & Watson, 2010). Furthermore, feminist disability scholars suggested that theory needs to mirror the lived experiences of persons with disabilities, inclusive of realities of embodiment, such as pain (Morris, 1992; French, 1993; Crow, 1996). I examine this next when explaining how disability activism now works concerning politics and coalitions.

How do we define disability activism? Disability activism has been inspired and fundamentally evolved from the theory of ‘social citizenship’ (Marshall, 1950), which is based on the notion that in a democratic society, citizens should have civil and political liberties as well as fundamental rights to socio-economic equality and individual dignity (Trevisan, 2017, p. 11). Disability activism is articulated as: 74

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The reunderstanding of disadvantage as discrimination, related heightened levels of rights consciousness across the community, and the shared vision of a barrier-free society on a cross-disability basis resulted in the use of law reform. (Vanhala, 2011, p. 105) Sandell and Dodds (2010, p. 3) view disability activism as an emergence of ‘activist museum practice’ thus, the practice of using various art forms with the intention of constructing and eliciting support within society, towards alternative, progressive ways of thinking about disability. This perspective highlights the conventional forces and concerns emanating from the fields of disability studies, disability politics and rights activism. These concerns have helped to shape, produce and circulate an ever-changing and variable range of imagery of disabled people within the public domain, highlighting both the challenges and the opportunities of staging imagery that is informed ethically and politically, to represent, interpret and engage in and with society. Barriers to developing disabled peoples’ political rights are mainly due to a lack of policy frameworks to support such developments (Sandell & Dodds, 2010) as well as new models. It is unclear if disability activism that has developed from within grassroots organisations could fill the discriminatory gap between having a disability and political participation. Trevisan (2017, p. 19ff ) suggests going beyond the history-led explanations that exist within the literature of the disability rights movement, to instead examine the ethos and structures of the very organisations that were responsible for the key events within the movement. These early organisations, like UPIAS (UPIAS, 1974) and BCODP, were influential in gaining social changes in the UK, but what was their ethos? UPIAS and BCODP were instrumental in bringing the grassroots activists together mainly because disabled people led them. In 1981, the BCODP became the UK Disabled People’s Council (UKDPC), which was a mix of service-focused organisations, alongside loosely structured advocacy orientated member-led groups. The network did not work and failed to advance disability rights until the Voluntary Organisations for Anti-Discrimination Legislation Committee was founded in 1985 and consequently renamed Rights Now! in 1992 (Trevisan 2016: 21). The interactions of those groups both internally and externally are reminiscent of grassroots organisations today, with regards for the need to set an agenda that has a pan-disability focus or appeal to encourage the participation of all, regardless of the nature of their disability. This agenda often has a moral focus on unifying everyone around an issue or specific identity. As gaining funding has gotten more difficult due to austerity, there has been a natural shift towards grassroots organisations now having a virtual or online presence. Mossberger et al. (2003, p. 123–124) argue that the Internet is now a resource for the civic identity of those excluded from mainstream society. As stated earlier in this chapter, in the UK, austerity measures began with the ­economic downturn of the 2008–2009 crisis and the then coalition government embarked on a ­programme of welfare reforms and cuts. These programmes affected disabled people in particular, as a result of these reforms targeting disability benefits, such as the Independent Living Fund (ILF), Disability Living Allowance (DLA) and additional taxes, such as The Bedroom Tax. These reforms prompted people with disabilities to fight back and organise themselves online, via groups and organisations, to campaign against government cuts. The lead organisations included the Disability Benefits Consortium (DBC), the UK Disabled People’s Council (UKDPC) and Disabled People Against Cuts (DPAC). According to the DBC website: The DBC is a national coalition comprising over 80 charities and organisations working together to combine their knowledge, experience and contact with disabled people and carers, to ensure government policies meet and reflect the needs of persons with disabilities. (DBC, 2018) 75

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The UKDPC act to co-ordinate disabled people led organisations and see themselves as the genuine representative voice of persons with a disability in the UK. They work towards achieving full inclusion together with DPLOs, government and other bodies. DPAC explain that: DPAC was set up by a group of disabled people after the ‘The Disabled Peoples Protest’ a mass protest against austerity cuts, held in Birmingham, the UK on 3rd October 2010. Although it is UK based it welcomes membership from everyone who believes that disabled people should have full Human Rights and that no country can destroy lives because of disability. (DPAC, 2018) The ‘Hardest Hit’ campaign, which was organised by DBC and DPAC, campaigned ­ K-wide against government cuts and published a report called ‘The Tipping Point’ (The U Hardest Hit Coalition, 2012) about the impact of cuts on disabled people, those with chronic illnesses and their families. There was also ‘The Broken of Britain Campaign’, which was a non-partisan group campaigning for those with invisible disabilities and illnesses. Trevisan (2017, pp. 83–84) suggests that there are three distinct types of active advocacy groups emerging with a digital or online presence: formal organisations, digitalised activists and digital action networks. The campaigns above are typical of formal organisations online and the way in which they organise themselves. Digital activists are more personality orientated and experienced, and Trevisan (2017, p. 83ff ) argues that some early digital activists would have been firmly rooted in the social model and the principles of the independent living movement. This experience is different from the early disability movement campaigners who were mainly involved in campaigning for anti-discrimination legislation in the 1980s and 1990s. This is also different from later campaigns and activisms that tried to use social media to ensure protest and change (Trevisan, 2018). Trevisan (2017, p. 223) argues that ‘The Broken of Britain Campaign’ was a more ­ambitious ‘interactive e-advocacy campaign’ when compared with DPAC. ‘The Broken of Britain Campaign’ was not the most democratic of campaigns delivered but it did create a platform, ‘for disabled internet users to perform political citizenship through the brokerage of politically driven and tech-savvy disabled peers’ (Trevisan, 2017, p. 223). This campaign illustrated the value of personal narratives to gain political citizenship and agency, and this is an outcome reflective of the political nature of their ‘private experiences’, highlighting how and why the personal becomes political and private public in a virtual realm (Morris, 1992; Fawcett, 2018). I argue that the above campaigns also gave activists hope and this is crucial to keep the momentum of a movement going. Hope can get regarded as personal, within the context of the social and political societal structures, and as Barton (2001, p. 4) suggests ‘collective hope’ needs to be encouraged because it is a ‘connective’ force (see Trevisan, 2018). Hence, for example, why DPLOs have such an important ‘role’ to realise a more inclusive democratic society and empower others (Barton, 2001). Barton’s (2001, p. 4) work supports the notion of such collectives having the role of supporting each other, while also becoming active in ‘educating and critiquing those outside the movement.’ At the moment, these organisations function more as pressure groups (Barton, 2001), and as is true of researchers with lived experiences and personal reflections, ‘group’ lobbying and campaigning has enabled political action and involvement of disabled people operating locally and nationally to access and influence the policy-making process. Despite the importance of these new groups, my experience resonates with Cawson’s (1982) argument that voluntary-action-interest-groups have less influence than corporate groups with an economic stake in the economy. ­Corporate groups get ‘the most political clout’, and this is one area that disability activism needs to 76

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work on, to change the perception and imagery of themselves in public. As, at the moment, it could be argued, from my perspective and personal reflection, that despite all the virtual disability activism, this has not led to national political change and it seems as if a unified disability movement with economic and political clout is not possible.

Is trans-disability solidarity possible? Reflecting on the disability movement and how it has evolved, I argue that we are at a junction in the UK and USA disability politics. Both the UK and the USA are experiencing similar ‘social’ and ‘economic’ situations such as the rise of the far right, populist politics, nationalism and the stripping of welfare entitlements, health care and rolling back of legislative protections in both countries. Current events demonstrate that in both countries citizens with disabilities are forced in a position to examine what to do going forward, regarding the future of the disability movement, disability activism and theorising, regardless of how events have evolved in the past. Some scholars have suggested that there is a need for a new disability activism or a new formation of disability culture (See Barton, 2001). The culture stance is challenged by the work of Bickenbach et al. (1999, p. 1181) via the suggestion that, ‘There is no unifying culture, language… experiences… [therefore lived experiences of disability are] not homogeneous.’ Further to the previous point, Bickenbach et al. (1999) argue that the chance of achieving ‘trans-disability solidarity’ is slim. Reflecting on my time with a pan-disability NGO, I would concur that this statement closely resembles the reality of the disability field. However, I feel that the idealism of scholars arguing for a new disability activism (Barton, 2001) is somewhat reminiscent of feminist ideals, that the personal is political, with the power to shape change and create in many aspects of life; so why not something as deeply rooted as a culture? Reflecting on my lived experiences, I have seen changes, for example, in education, which now attempts to reflect the reality of the diversity of lived experiences. Disability research now reflects political issues such as employment as opposed to just medical diagnosis or medicalised identities in keeping with real lived experiences and rights. This shift in research enables a view of disability as a social, political and economic issue. That is not to say that disabled people should discount the progress of the gains for the legislative and policy changes within the past twenty years, but rather the disability movement needs to empower and unify its members economically, socially, culturally and politically again (Barton, 2001, p. 79). At present and in the future, not wanting to conclude with a simplistic generalisation of how activism could evolve, which Shakespeare (2006) warns against, the truth is that legal, economic and political change is needed. The reality of the current global political and economic uncertainty has meant that DPLOs are not, necessarily, the campaigning backbone of the disability rights movement anymore (Oliver, 1997). DPLOs have had to focus on competing for funding which has blurred the line between disability rights groups and disability charities as more disability rights groups are becoming service oriented around advocacy and awareness, to get financial support. Shakespeare (2006, p. 16) explains, ‘Charities have become more like disability rights groups’ and vice versa, and this interchangeable role reversal has been noted and criticised within the existing literature (Oliver & Barnes, 2006; Barnes, 2007), as a threat that undermines the continuing success of disability politics and political action. Shakespeare (2006) believes that this is done to gain credibility with the policy-makers and as Beckett (2005; 2006a; 2006b) found, could be the cause of the loss of momentum and engagement within disability activism. Trevisan (2017, p. 25) states that 77

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in the USA, ‘Disability advocacy organisations… rely heavily on membership dues to selffund’, which on the one hand means they can negotiate an independent agenda free of funding constraints; however, on the other hand, ‘this constitutes a barrier for those who would like to join but cannot afford it.’ While disability activism has once again started, it has to keep the momentum going by ensuring outreach and paradigms that fit the social, economic and political times, at which it is not always successful (Trevisan, 2018). Rioux (2001, pp. 36–37) refers to the last twenty years of disability in terms of a shifting paradigm ‘from a medical welfare model to a human rights model’. Thus, utilising international norms and standards as guidelines in the quest for change, offered by legislation such as the United Nations Commission on Human Rights Resolution 2000/51, and the CRPD. The CRPD (UN, 2006) recognised disability as a human rights issue and furthermore gave disabled activists a ‘legislative platform’ that has enabled them to compare and view disability like other protected characteristics (Barton, 2001). There is no doubt that the history of the disability movement has evolved from the ­medical and social models of disability, as well as the struggles against inequalities and discrimination to become a movement that is firmly grounded in human rights. This grounding is reflective of legislative victories such as the enactment of anti-discrimination laws, which has put disability on the political agenda and given disabled people user involvement regarding service delivery, locally, nationally and globally. Human rights have always acted in terms of trans-disciplinarily and solidarity, but in many ways, in the UK and USA, we are now going back in time to when disabled people were treated as ‘medical problems’ by the state. Camilleri and Callus’s (2001, p. 91) work highlights the immediate need for disability activists to ‘raise the stakes… challenge by creating a critical mass of activists… strong ­independent movement of disabled persons.’ They further argue that: To be a movement made up of disabled people who are conscious of the fact that it is not enough for them to fight their corner to make their lives marginally better in material terms. They have to realise the need to raise the consciousness of the public in general and decision makers, employers, educators and service providers… No lasting change can come not funded and safeguarded by a strong, independent movement of disabled people (Camilleri & Callus, 2001, p. 91). The extract above, even though from 2001, is still reflective of my own lived experiences, although I have seen that there is a collective realisation among persons with disabilities of the need ‘to raise the consciousness’. It is challenging to become the ‘strong independent movement’ envisaged (Camilleri & Callus, 2001), most notably at a time when both personal and public funding in relation to disability is scarce, and therefore any available financing is competitively sought after. On reflection, one could argue that such budget constraints have weakened the traditional disability movement and we have lost the political opportunities necessary for social movements because of austerity. However, one could also argue that the previously mentioned internet activism campaigns might provide future answers, concerning creating a trans-disability movement, which utilises the possible opportunities afforded by the growing technological developments and uses of the Internet, social media, apps and virtual reality platforms to explore a new model of disability.

Conclusion This chapter highlighted that shared identity and collective action (Benford & Snow, 2000), regarding issues such as legislative changes and independent living are what brought disabled 78

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people together (Pearson, 2012). Drawing from my personal experiences, one could argue, as the work of Baym (2010, p. 90) suggests, that generally, ‘networked participation tends to be centred on personal interests and private issues’. For many of us, the personal becomes political, but we need to continue to build on the growing digital opportunities afforded by the use of the Internet and social media. We have seen the connections and activisms that have been forged and pioneered during campaigns, as mentioned earlier, against austerity cuts and changes regarding welfare and social security. We need to grow a strong, independent movement that is politically active as opposed to one which is reactive, utilising technology such as social media, alongside the emerging possibilities, such as virtual reality platforms. We also need to create a movement which is economically viable with the ability to be a truly trans-disability global movement. We need a disability movement of ‘proactive activism’, that goes beyond making personal issues marginally better to challenging the consciousness of today’s global society leaders and decision-makers to forge lasting legislative change, for the betterment of the future generations of persons with disabilities, locally and globally.

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4 FIGURES An artist-activist response to austerity Liz Crow

Introduction Figures was a mass-sculptural performance that set out to make visible the human cost of austerity and urge action against it.1 Performed in early 2015, across the four months leading up to the United Kingdom (UK) general election, the work was an activist response to five years of austerity enacted by a Conservative-led coalition government in the wake of the 2008 global economic crisis. With huge cuts and reforms to public services, the policy had taken, and continues to take, a heavy toll.2 Initially applied to social security, where disabled people became the first to be hit, the austerity programme expanded to government departments and local authorities, with an onslaught on home care, hospital treatments, funding for student tuition, school building programmes, emergency services, libraries, public sector wages, road maintenance and so on, through the whole spectrum of social infrastructure (O’Hara, 2014; Cooper & Whyte, 2017). The effects of austerity have been experienced unequally across the population. The poorest and those in the most precarious social circumstances have borne the earliest impact and greatest hardship, worsening as cuts have accrued across multiple services, but austerity’s reach has extended over time to a much broader public. Beyond material consequences, the cumulative impact of austerity has been marked through worsening inequality, deteriorating mental health, deaths of disabled benefits claimants and increases in hate crime and nationalism (Burnett, 2017; Stuckler & Basu, 2013; O’Hara, 2014; McRuer, 2018). By the time of the 2015 election, with further austerity threatened by all the main political parties (Crawford et al., 2015), it was clear that the harm could only increase and, alongside other activists, it had become imperative to make it a very public election issue. It was out of this that the Figures project was born. This chapter describes the project and how it performs as a work of activism. Extending beyond the representation of disabled people alone to examine the sweep of austerity across the UK, disabled people were nonetheless disproportionately highly represented because of the excessive injury undergone by that community. Through the work, I set out to lay bare the stark human cost of austerity, in order to create a point of entry, for a range of audiences, to the complex structures and injustices behind it.3 My intention was to communicate viscerally its impact upon ordinary people, beginning with a simple avowal that any policy causing such hardship is wrong and 81

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needs to be rejected. The audience responses that ensued gave a starting point for dialogue, encouraging complex questioning and moving members of the public towards a search for solutions.

The Figures project Emerging from 30 years in activism, and a shift into creative work, and intertwining with my own experience of austerity as a disabled person, Figures was the third in a series of performance works I undertook to protest austerity.4 I took up residence on the Thames foreshore over a period of 11 consecutive days and nights, working with mud dug from my home river, the Avon, to sculpt 650 small human figures, each one representing an individual at the sharp end of austerity. At every low tide, twice daily and in all weathers, I sculpted the figures. As the incoming tide encroached, the newly-shaped figures were moved to a nearby exhibition space, so that returning members of the public could watch them amass as the days progressed. Though shaped in the same form, each figure differed in its detail, representing both collective humanity and the individual. Their number echoed the 650 electoral constituencies in the UK throughout which the effects of austerity could be found, as well as the number of Members of Parliament whose policy decisions determine the future of austerity and the opportunities of those they are elected to represent. Every figure was paired with a short narrative of a person at the sharp end of austerity, written to convey both the human cost and the humanity of those it harms. Collated and edited from press and parliamentary reports, research, policy and campaign materials in the field of social justice, each time a new figure was made, a story was released via social media and displayed in the exhibition space. Narratives were drawn from all electoral constituencies, demonstrating the far-reaching impact of austerity, and represented a wide spectrum of themes, across benefits reform, local authority spending, homelessness,

Figure 4.1  Making sessions took place at low tide on the Thames foreshore. Credit: Matthew Fessey/Roaring Girl Productions

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Figure 4.2  Each of the 650 figures represented an individual at the sharp end of austerity. Credit: Claudio Ahlers/Roaring Girl Productions

Figure 4.3  The figures amassing during a making session. Credit: Claudio Ahlers/Roaring Girl Productions

malnutrition, underemployment, NHS budget restrictions and so on. Single narratives depicted the impact of austerity upon individuals in a range of circumstances, whilst the combined weight demonstrates its collective and cumulative impact. My intention was that the symbolism of the sculpted figures would create a visceral connection with audiences, and a gateway to the harsh reality and real-life stories of austerity. The siting of Figures on the south shore of the Thames placed the performance in geographic opposition to the UK’s primary institutions of austerity: Parliament, the old Fleet 83

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Street of journalism, the legal district and the financial centre of Canary Wharf. By locating the work below the iconic Oxo Tower, an everyday space of both gentrification and rough sleeping, rooted community and transient populations, it was able to reach a diverse audience: local residents and workers who encountered the work daily, families on the Easter school break, tourists and international travellers who shared experiences of austerity from home, people insulated from austerity and those who had slept the previous night on the foreshore for a lack of shelter. In its encounters with audiences, the work enlarged beyond exposing the human cost of austerity, to a quiet sustaining of some of those at the sharpest end. Curiosity was key to drawing audiences in, a ‘sideways approach’ that prompted participation from people who would not intentionally approach a project on austerity. Volunteer stewards and members of the project team supported the conversations that ensued and, as my presence on the foreshore became more established, increasing numbers of people came down from the raised riverwalk to watch at close hand and talk to me. Social media amplified the reach of the performance and accompanying conversations and, as word of the performance spread, some people visited the foreshore specifically to experience the work. The project’s position on austerity was evidently oppositional; conversations, however, were deliberately open-ended, beginning from the experience and knowledge of the participating public in order to encourage involvement and keep it relevant. An exchange might begin with questions about sculpting or the tides, but then extend to the real people represented by the figures, to shared accounts of the impact of austerity on friends, neighbours, strangers and themselves, and on to the deeper political questions raised by the work: the architecture of austerity; the values we want to underpin our society and to live by; and the roles we might each have in bringing that about. In contextualising the stories of individuals, Figures became a representation of human loss and societal failings, a naming of the collective work we need to do to. Once the completed figures were dried, they were toured en masse, in the week before the election, in a mobile exhibition that stopped at cities from London to Bristol, in order

Figure 4.4  Drawing members of the public into conversation. Credit: Matthew Fessey/Roaring Girl Productions

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to continue the conversations that began on the foreshore. Our first scheduled visit was to a London borough ranked high on the economic deprivation index, and low for voter turnout. Council officials cancelled our site booking at short notice, citing ‘election purdah’, while another local authority barred us on grounds that our tour vehicle was not ‘attractive’ enough for their town centre. We turned the tour guerrilla, joining the international labour movement rally in Trafalgar Square in celebration of May Day and parking up outside Prime Minister David Cameron’s constituency office. Reaching Bristol on the eve of the election, the figures were returned to water’s edge and built into a bonfire. As the figures fired, the narratives of austerity were read aloud by the project team, broadcast via livestream in a six-hour performance, until the returning tide doused the flames. The figures, fired, burned and broken, were reclaimed, gathered and ground down to dust. The final phase of the performance took place after the election, timed to coincide with the State Opening of Parliament. Despite the years of communities alerting population and government to the impact of austerity, the election had brought another downturn in the political landscape. A Conservative majority government was returned, with a pledge to extend and amplify the austerity programme, and it was clear that we could not be heard at home. Following an entreaty to the UN by disabled activists to investigate the cumulative impact of the UK’s austerity programme5, I sailed out into the Bristol Channel, scattering the remains of the figures into open waters as a symbolic distress call to the global community.

Notes 1 Full documentation of the project (stills, video, press coverage, etc) and legacy materials can be found on http://www.roaring-girl.com/work/figures/ (accessed on 8 August 2018). Figures was funded by Arts Council England and National Lottery Awards for All. 2 The full impact of the austerity programme is projected to unfold for many years after its official end (Clark, 2014; Cooper & Whyte, 2017). 3 The reasons behind austerity are enormously complex – a tale of global banking systems gone wrong, public finances being used to bail them out, with debts being repaid via cuts to public services. The result is that ordinary people are tasked with paying for the banking crisis, through an onslaught on public services and personal hardship, whilst the causal structures go unchanged. Whilst presented as a necessary ‘commonsense’ solution to the deficit, there is increasing consensus that austerity does more harm than good (Ostry, Loungani & Furceri, 2016; McRuer, 2018) and that the programme has served a larger, and global, neoliberal agenda to cut back the role of the state in favour of privatisation (Blyth, 2013; Krugman, 2015). For McRuer (2018), the UK is the world’s austerity ‘ground zero’. 4 Other works in the series are Bedding Out (Crow, 2012b), a 48-hour durational performance in response to the current benefits overhaul, in which Liz took to her bed in a gallery, livestreamed to almost 10,000 people in over 50 countries, and the Atos Protest Armband (Crow, 2012a), in which Liz wore a mourning band with the text ‘Atos kills’ into the Paralympic stadium to protest its sponsorship by the company that was overseeing the notorious Work Capability Assessment that was causing such hardship to disabled people. 5 In response to a 2013 submission from Disabled People Against Cuts (DPAC) to the United Nations (DPAC, 2015), in 2016, the Committee on the Rights of Persons with Disabilities (CRPD) charged the UK government with ‘grave’ and ‘systematic violations’ of the rights of disabled people through its welfare reforms (Pring, 2017; Committee on the Rights of Persons with Disabilities, Convention on the Rights of Persons with Disabilities, 2016) and, in a separate report, the Committee on Economic Social and Cultural Rights expressed serious concern about the adverse effect of broader austerity measures upon disadvantaged and marginalised individuals and groups (Committee on Economic Social and Cultural Rights, 2016). In 2017, the Chairperson of the CRPD stated that ‘social cut policies have led to a human catastrophe’ in the UK (Disability Wales, 2017). The government subsequently rejected the Committees’ findings.

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References Blyth, M. (2013). Austerity: The History of a Dangerous Idea (1st ed). New York: Oxford University Press. Burnett, J. (2017). Austerity and the production of hate. In V. Cooperd & D. Whyte (eds). The Violence of Austerity (pp. 217–224). London: Pluto Books. Clark, T. (2014). Hard Times: The Divisive Toll of the Economic Slump (1st ed). New Haven and London: Yale University Press. Committee on Economic Social and Cultural Rights (2016). Concluding Observations on the Sixth Periodic Report of the United Kingdom of Great Britain and Northern Ireland, United Nations. Report number: E/C.12/GBR/CO/6. New York: United Nations. Committee on the Rights of Persons with Disabilities, Convention on the Rights of Persons with Disabilities (2016). Inquiry Concerning the United Kingdom of Great Britain and Northern Ireland Carried Out by the Committee Under Article 5 of the Optional Protocol to the Convention. Report number: CRPD/C/15/R.2/Rev.1. New York: United Nations. Cooper, V., & Whyte, D. (2017). Introduction: the violence of austerity. In V. Cooper & D. Whyte (eds). The Violence of Austerity (pp. 1–34). London: Pluto Press. Crawford, R., Emmerson, C., Keynes, S., & Tetlow, G. (2015). Post-election austerity: parties’ plans compared. Report number: IFS Briefing Note BN170. London: The Institute for Fiscal Studies. Crow, L. (2012a). Atos protest armband. Retrieved from http://www.roaring-girl.com/work/atosprotest-armband/ on 8 August 2018. Crow, L. (2012b). Bedding out. Retrieved from http://www.roaring-girl.com/work/bedding-out/ on 8 August 2018. Disability Wales (2017). Austerity policies a ‘human catastrophe’. Retrieved from http://www.disabilitywales.org/blog/austerity-policies-a-human-catastrophe/ on 8 August 2018. Disabled People Against Cuts (DPAC) (2015). So DPAC triggered the UNCRPD but what does it really mean? Retrieved from https://dpac.uk.net/2015/09/so-dpac-triggered-the-uncrpd-inquiry-butwhat-does-it-really-mean/ on 8 August 2018. Krugman, P. (2015). The Austerity Delusion. Retrieved from https://www.theguardian.com/business/ ng-interactive/2015/apr/29/the-austerity-delusion on 8 August 2018. McRuer, R. (2018). Crip Times: Disability, Globalization, and Resistance. New York: New York University. O’Hara, M. (2014). Austerity Bites: A Journey to the Sharp End of Cuts in the UK. Bristol: Bristol Policy Press. Ostry, J. D., Loungani, P., & Furceri, D. (2016). Neoliberalism: Oversold? Finance and Development, International Monetary Fund 53(2), 38–41. Retrieved from http://www.imf.org/external/pubs/ft/ fandd/2016/06/ostry.htm on 8 August 2018. Pring, J. (2017). UN confirms that UK Government’s Treaty Violations were both grave and systematic. Retrieved from https://www.disabilitynewsservice.com/un-confirms-that-uk-governmentstreaty-violations-were-both-grave-and-systematic/ on 8 August 2018. Stuckler, D., & Basu, S. (2013). The Body Economic – Why Austerity Kills. London: Allen Lane, Penguin Random House.

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5 AS TECHNOLOGY GIVETH, TECHNOLOGY TAKETH AWAY John Rae

Introduction About 35 years ago, we as persons with disabilities (PWDs) were promised that technology would set us free and make us equal. For some of us, this promise has become reality, but for others, especially in the area of employment, technology has too often created more barriers than provided solutions. Technology has opened many doors. The Internet has made it possible for blind persons to access more information than many believed would ever be possible, and has brought the world of ‘information overload’ squarely into the lives of blind persons. Operator-run telephone relay services make it possible for deaf individuals to communicate with hearing persons, and video relay services are being developed. Cell phones provide instant communication from wherever you might be. A growing number of severely disabled individuals live far more independent lives through the use of voice commands to operate appliances in their home or apartment than previously possible. However, technology is also a tremendous negative development in our lives. Here is an example of its direct and negative impact on the blind community in the Global North. When I was considering my life’s career, I first thought of law, but in those days, I believed, perhaps inappropriately, that getting textbooks and other reading materials in a format that I could read would simply be too difficult to obtain, so I moved on to other possibilities. In those days, even less reading material than in modern times was available in alternative formats, and the idea of scanning had not been developed back then. At that time, many blind persons worked in a number of what were often called ‘stereotypic’ jobs – darkroom technician, telephone operator, receptionist, transcriptionist, or social worker, jobs many blind persons somewhat looked down upon though we shouldn’t have denigrated them. My own first job was as a photo finisher, working all day in a commercial darkroom where two other blind persons were already employed when I joined the company. Fortunately for me, a consumer organisation of blind persons known as the Blind Organization of Ontario with Self-Help Tactics (BOOST) was formed a year and a half later. I was lucky enough to secure one of its first positions as a Community Organiser. This job, I believe, later helped me obtain a full-time, permanent job with the provincial government of the province where I was born and have always lived. At that time, various levels of government were a major source of employment for persons with various disabilities. 87

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In modern times, technology has rendered many of those so-called stereotypic jobs obsolete. Today, few people work in those fields, and the blind community is struggling to find career alternatives. The large-scale disappearance of these jobs has not just affected the blind community. The most obvious example is in the area of dictation software. Dragon Naturally Speaking, the best-known example of this technology, was initially developed for quadriplegics, whose disability prevents them from being able to type. Today, however, the largest market for dictation software is among executives and others in high positions who used to have secretaries to produce documents for them. Many of these individuals have lost their support staff, never learned how to type themselves, and now must create their own work without assistance. It is always rewarding to see innovations that were developed to assist PWDs achieve wider acceptance and usage.

Employment Statistics are hard to find, but Goffin (2016) states that the employment rate for visionimpaired Canadians of working age is just 38%, compared with over 60% for the population at large. In a recent poll by the market research firm Ipsos, 70% of Canadians surveyed said that, if faced with two equally qualified job applicants, they would hire the sighted applicant over the vision-impaired candidate (Rae, 2017). About 10% to 14% of vision-impaired participants believed that they had been refused jobs, interviews or promotions because of their visual impairment (Rae, 2017). This situation was re-enforced by an employment survey in 2017 that found only half of disabled Canadians have a full or part-time job (McQuigge, 2017). The survey commissioned by Canadian Imperial Bank of Commerce (CIBC) and conducted by Angus Reid found that only half of respondents with a disability had a full or part-time job (McQuigge, 2017). The survey identified that most people (67%) were out of work as a direct result of their disabilities and only 23% would disclose a disability before an interview (McQuigge, 2017). Furthermore, 19% of people said that they would not disclose and half of those people stated this was because they feared discrimination (McQuigge, 2017). Persons with disabilities represent a significant segment of Canada’s overall population. According to Statistics Canada, figures show that in 2012, approximately 3.8 million adult Canadians, around 13.7% of the population, reported being ‘limited in their daily activities due to a disability’ (Arim, 2015). Additionally, they noted that in 2011, the rate of employment of Canadians with disabilities was 49%, but for Canadians without a disability it was 79% (Turcotte, 2014). There was also a hierarchy developing among which PWDs could get jobs, with those with very severe disability reporting only 26% employment compared to those with mild disability at 68% (Turcotte, 2014). Over the last two decades, the world of work has changed dramatically and it continues to further automate, which only reduces the number of jobs that are available to all prospective workers. This makes it easy for employers to pit worker against worker, and to drive down wages and discourage unionisation. Today, more and more individuals face the reality of the world of precarious employment, with short-term contract jobs becoming more and more the norm. These jobs often do not come with the kind of benefits package that often accompanies more stable jobs. Thus, many persons with disabilities who are currently receiving social assistance must agonise over whether it is worth trying to leave social assistance for a low-paying, entry level job, as achieving employment might even leave them economically worse off than if they were to remain on social assistance, a state of life many want to escape. 88

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Canadians with disabilities, including Canadians who are blind, deaf blind, or partially sighted represent a large, untapped resource, and we continue to be plagued by an unacceptable level of chronic unemployment and under-employment that should be considered a national disgrace in an affluent and developed country such as Canada! This reality is no accident; public policy could and must do much more to bring about the motto of the 1981 International Year of the Disabled Person, ‘full participation and equality’. Many PWDs can and want to work full time but cannot find employment. The unemployment rate facing Canadians with various disabilities is further exacerbated by a growing trend among today’s employers, who are increasingly seeking employees who can perform a wide range of varied tasks. Although many PWDs may be able to perform a variety of tasks, we may not be able to perform as wide a range as today’s employers would like, and as a result are too often passed over for a non-disabled person who is perceived to be a more flexible worker. Performance pay for all senior executives should be tied to the senior manager’s ability to eliminate barriers within the workplace and increase the representation of persons with disabilities in their organisations. Canada has an impressive array of anti-discrimination legislation, and court decisions have enshrined the concept of the employer’s duty to accommodate a worker short of undue hardship. However, the continuing extent of unemployment and under-employment of Canadians with disabilities flies in the face of employers who regularly whine about labour shortages in their field, and the refusal of many employers to adequately discharge their legal duty to accommodate workers, which contributes directly to a vicious cycle of disadvantage. Unemployment leads directly to a high rate of poverty among too many Canadians with disabilities, and poverty contributes directly to health problems and isolation from public life. Today, we see the largest percentage of complaints to all human rights bodies throughout Canada are based on the prohibited ground of discrimination of disability and the largest percentage of these fall under the area of employment. These statistics tell us two things: on the one hand they indicate that members of the disability community have learned they have an increasing range of rights, but on the other hand that chronic and pervasive discrimination remains widespread within a country that prides itself on its’ human rights record.

Legal protections and accessibility of employment Canada’s federal government has recently enacted the Accessible Canada Act, which the disability community hopes will ultimately make a tangible difference in the lives of all Canadians with a disability. To be truly successful, the legislation must result in the development of clear Standards that are rigorously enforced to remove existing barriers and prevent the introduction of new barriers. It must enshrine universal design in buildings, equipment, software and furniture, and must contribute directly to making transportation, education and training, housing and the workplace and its facilities (such as office space and design) truly usable by a wider number of individuals. All of these aspects must be designed in a manner that provides ease of access for those who use a wheelchair, but also must offer easy access for those who are blind or vision-impaired and have other disabilities. In this regard, a federally regulated facility cannot say that a building has met the requirements of inclusive design if it only has a ramp for wheelchair users. The organisation must ensure the rest of the facility is accessible; such as ensuring that elevators are independently usable by persons who are blind and vision-impaired, and that washrooms have tactile displays. To this end, the Act must help remove all barriers which inhibit or prevent any group of PWDs from gaining employment in society. 89

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The issue of procurement has become a relatively new priority issue for Canada’s disability rights movement. The Government of Canada, its Agencies, Boards and Commissions, along with other large public and private sector organisations, purchase a wide range of items from technology to equipment, and many offer grants or contributions to outside organisations. If these organisations were to use their extensive purchasing power, they could positively influence the marketplace to produce a wider range of products that are developed with universal design principles in mind. This purchasing power should be used to leverage the manufacturing sector to produce an increased range of technology and other products that are designed and manufactured using universal design principles so that they may be used immediately and without adaptations by a larger number of individuals than at present. All Requests for Proposals issued by the government of Canada, its Agencies, Boards and Commissions, and other major public- and private-sector organisations, should contain a contract compliance clause regarding accessibility, and this provision must be accorded an integral part of the decision-making process when bids are being assessed. The clearest precedent for this is Section 508 of the United States Rehabilitation Act of 1973 that makes accessibility a procurement criterion for the United States federal government. More specifically, when federal agencies develop, procure, maintain or use electronic and information technology, they must ensure that the technology is accessible to employees and members of the public who have disabilities to the extent that it does not pose an ‘undue burden’. The law establishes a complaint procedure and reporting requirements. Individuals may also sue an agency in court to correct an alleged violation. For blind Canadians, this is particularly crucial when it comes to the purchase of new technology, which can either enhance our range of opportunities, or create new barriers that will only further shut us out. Encouraging the manufacture of an increased range of products based on universal design principles will not only benefit Canadians with disabilities, but if, as members of a trading nation, Canadian businesses were to take a leading role in the development, manufacture and export of goods that are usable by a wider range of individuals, this could open up new markets worldwide, as an increasing number of nation states implement their obligations under the United Nations (UN) Convention on the Rights of Persons With Disabilities (CRPD) (UN, 2006). Canada’s federal government is a large employer and it must lead by example to redress the chronic level of unemployment and underemployment that is the reality for too many PWDs. The federal government must become a model employer itself; encourage a more positive climate to reduce the stigma associated with disability; institute targets and time tables that will increase the hiring, retention and promotion of more persons with disabilities. To support these objectives, the federal government should strengthen the federal Employment Equity Act, and tie performance pay for all senior executives to improving the representation of persons with disabilities in their organisations. Through consultations with business, labour and consumer organisations representing persons with disabilities, the Government of Canada must work more closely with employers and develop new initiatives to help overcome the pervasive resistance of employers to hire, accommodate and retain workers with disabilities. In 2016, speaking at a meeting of the governing federal Liberal Party’s Ontario wing in Niagara Falls, Ontario, Finance Minister Bill Morneau was quoted as saying in part that Canadians should get used to the so-called ‘ job churn’, meaning short-term employment and a number of career changes in a person’s life (The Canadian Press, 2016). When asked about precarious employment, the Finance Minister told delegates that high employee turnover and short-term contract work will continue in young people’s lives and 90

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that government has to focus on preparing for it (The Canadian Press, 2016). While his comments were greeted with derision, especially from a number of youth delegates, there is growing evidence of the accuracy of his perspective. While the growth in more precarious work has implications for all workers, its growth has a disproportionately negative impact on workers with disabilities. Since it can take longer for a person with a disability to find a job, any job, then for a person with no disability, it follows that the advance of short-term, less secure contract work will result in lengthy periods of unemployment between jobs for persons with disabilities. The Government of Canada must work more with business, labour and consumer organisations to develop new initiatives to help cushion the disproportionately negative effects of precarious work on the disability community, a segment of Canadian society that already faces chronic levels of systemic unemployment and under-employment. The plight of workers who are injured or become ill at work is further disadvantaged by the strange and immoral practice of ‘deeming’. According to Noorsumar (2017), under this practice, the Workplace Safety and Insurance Board (WSIB) assumes the availability of full-time employment (40 hours a week), but these are phantom jobs that don’t exist. The WSIB determines the type of employment a worker can do despite their injury, assumes they are hired full-time in that position (even when the injured worker isn’t working at all), and then deducts the amount of pay of that phantom job from their compensation benefits (Noorsumar, 2017). In many cases, even though severe pain from a back injury can make employment impossible, the Board may still consider the worker capable of working full-time as a customer service representative and slash the worker’s benefits. When the system was started, it was intended – together with vocational rehabilitation services – to nudge those workers who had injuries into work again (Noorsumar, 2017). Noorsumar (2017) explains that lawyers from Injured Workers Consultants Community Legal Clinic (IWC) have stated that ‘the Board fails’ its most vulnerable. Noorsumar (2017) argues that WSIB has not got a hold on what ‘is suitable and what is available’, that injured workers may not be able ‘to complete work transition training plans because of their injury’ or educations and also encounter stigma linked to their injuries and being viewed as person with disability. Noorsumar (2017) states that the Injured Workers Consultants estimate ‘82,000 workers have been wrongfully deemed since 2007’. Deeming is one of many issues facing workers who may not be aware of how disability legislation links into their medical conditions and acquired disabilities and employment rights. Campaigns in Canada to address such issues are, for example, the ‘Workers’ Comp is Right’, which is being led by organisations that represent injured workers (Noorsumar, 2017). During the years of the Stephen Harper Conservative government, 2006 to 2015, a number of so-called poverty reduction studies were conducted and released. In Canada, whenever reports are released, the government must issue a response within 120 days, and the Harper government grudgingly fulfilled this obligation. It offered a very simple, and I would suggest callous response, that there is a solution to the poverty facing many Canadians, including Canadians with disabilities … go out and get a job. Unfortunately, these responses did not even suggest where are all these jobs that persons with disabilities and other Canadians facing poverty are suddenly supposed to find and obtain, and we are yet to find that elusive employment genie who can answer this fundamental question. The overall plight of persons with disabilities is no accident; rather it results from conscious decisions taken by governments, planners and business. These policy decisions can either focus on the needs of people or the profits of the few. Alas, the business lobby and 91

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its contributions at election times is tremendously powerful. We have witnessed the effects of the austerity agenda, with massive tax cuts that are supposed to spur business investment, create jobs and ensure these benefits ‘trickle down’ through society. Unfortunately, if benefits have trickled down, this so-called trickle seems to have bypassed the disability community. This is why our community needs more government involvement and regulations, and not fewer. The motto, ‘Nothing about us without us’ is a familiar phrase that has been uttered far and wide by the disability rights movement for many years. Increasingly, we expect to be viewed in a different light, not merely as one more group of stakeholders but to have a preeminent place at any table where policies, programmes or legislation is being considered. We expect increased representation in all decision-making bodies that affect our quality of life.

Conclusion The ongoing inadequate level of representation of persons with disabilities and our organisations has made it easy for the needs and aspirations of our community to be simply ignored or even consciously disregarded when important decisions about us are being made. It is now time to move beyond the improved discourse of the social model of disability and focus more on actions, outcomes and concrete changes. Whether in funding bodies where the research agenda is too often determined in universities, the newsrooms where decisions about which stories will be covered, the political party offices where platforms are developed, the boardrooms where decisions about hiring policies are set, the offices where decisions about the manufacture of new products are determined, the municipal planning departments where policies about community access are determined or the ministry offices where decisions about government policies are made, the one-seventh of our population, persons with disabilities, have never been adequately included (Arim, 2015). If we are ever to make significant progress towards achieving the elusive goal of the International Year of the Disabled Person, 1981, ‘full participation and equality’, this must change! Redressing some of our historic chronic level of unemployment would bring some of us out of poverty and would provide organisations with badly needed in-house expertise on disability that could lead to new products, services and programmes. This could make Canada the envy of many other nations that are also grappling with bringing persons with disabilities into the mainstream after their own ratification of the CRPD (UN, 2006). A strong business case has been made; the moral imperative has been clearly articulated and the benefits of bringing more of us into the economic mainstream through meaningful employment is obvious, yet we are expected to remain on the side-lines, ‘out of sight and out of mind’. It’s time to work more collaboratively together to ensure a better future for the next generation of rights holders with various impairments. However, as our society continues to become even more automated and precarious work becomes even more the norm than an exception, I can only predict the employment prospects for persons with disabilities will become even starker, and that is why I have changed the focus of my own advocacy work from employment to fighting poverty, and the search for a more adequate level of income in social assistance programmes. Persons with disabilities want and need a more decent standard of living, and if this goal cannot be achieved through bringing many more of us into the job market, then it must be achieved through providing a more adequate level of basic universal income through social assistance programmes. 92

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References Arim, R. (2015). A Profile of Persons with Disabilities among Canadians aged 15 Years or Older, 2012: Canadian Survey on Disability. Ottawa: Statistics Canada. Goffin, P. (2016). Blind workers teach employers to see the bigger picture. The Star, 24 October 2016. McQuigge, M. (2017). Only half of disabled Canadians have a full or part-time job: CIBC poll. The Canadian Press, 17 January 2017. Noorsumar, Z. (2017). The WSIB’s horrific practice of deeming. Rank and File, 2 November 2017. Rae, J. (2017). Bringing Canadians with disabilities into the mainstream of Canadian Society. Accessibility News International, January, 2017. The Canadian Press (2016). Get used to ‘job churn’, Morneau tells Liberal meeting. The Canadian Press, 22 October 2017. Retrieved from https://www.ctvnews.ca/politics/get-used-to-job-churnmorneau-tells-liberal-meeting-1.3126992 on 26 August 2018. Turcotte, M. (2014). Persons with Disabilities and Employment. Ottawa: Statistics Canada. United Nations (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations.

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PART III

Rights, embodied resistance and disability activism

6 EXERCISING INTIMATE CITIZENSHIP RIGHTS AND (RE)CONSTRUCTING SEXUALITIES The new place of sexuality in disability activism Alan Santinele Martino and Margaret Campbell Introduction To realise our sexual freedom, our goal must be to infuse the dominant sexual culture with the richness of our own experience. We must celebrate our differences from those without disabilities. We must see that our differences in appearances and function which are the sources of our degradation also contain the seeds of our sexual liberation. (Waxman-Fiduccia, 1991, p. 25). More than 20 years have passed since the publication of the ground-breaking book, The Sexual Politics of Disability: Untold Desires. Authored by Tom Shakespeare, Dominic Davies and Kath Gillespie-Sells, this text sought to politicise sexuality as a disability rights issue and was one of the first texts to empirically examine a variety of topics related to the intersections of disabilities and sexualities (Shakespeare et al., 1996). Recently, Tom Shakespeare revisited this work in an article co-authored with Sarah Richardson titled, ‘The Sexual Politics of Disability, Twenty Years On’ (2018). In this article, they present longitudinal qualitative data they collected by interviewing eight of the forty-two participants involved in the original research. The follow-up study examined what has changed in the lives of the participants with respect to their sexual and romantic lives since the ground-breaking study in 1996. While some participants expressed how they gained confidence in their sexualities and bodies with age, they still struggled with maintaining a long-term relationship and with the fact that social attitudes regarding disability remain predominantly negative (Shakespeare & Richardson, 2018, p. 84). Individuals involved in this study felt that attitudes toward disability had changed, but not by much, and as Shakespeare and Richardson (2018, p. 88) note, ‘the prevailing social attitude was that it was okay to be disabled as long as you are beautiful and symmetrical.’ Although, the authors acknowledge that the amount of disability-sexuality research has increased since 1996, they contend that studies focused on the intersections of disability and sexuality remain ‘thin on the ground’ (Shakespeare & Richardson, 2018, p. 88). Shakespeare and Richardson (2018) conclude by encouraging

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emerging scholars to explore issues related to disabled people’s intimacy and sexuality. As researchers, we find ourselves motivated by these words of encouragement and seek to respond to this call for further research by writing a chapter that explores a new ‘wave’ of disability activism that unabashedly addresses issues related to sexuality. Shedding light on academic and activist attention to these issues is important because historically, the disability rights movements had considered sex and sexualities to be an apolitical or personal matter. As a consequence, the many questions related to disabilities and sexualities were neglected, under-explored and depoliticized (Finger, 1992; Shakespeare et al., 1996). The ‘mother’ of the disability-sexuality rights movement, Barbara WaxmanFiduccia, and the former president for the Society of Disability Studies, Anne Finger, have lamented this fact by writing, The disability rights movement has never addressed sexuality as a key political issue, though many of us find sexuality to be the area of our great oppression. We may well be more concerned with being loved and finding sexual fulfilment than getting on a bus. (Waxman & Finger, 1991, p. 1) Similarly, other scholars and activists have criticised how any attention to issues related to sexuality tended to focus on heterosexual men, and neglected disabled women’s experiences (Morris, 1993; Thomas, 1999; Thomas, 2006), ignored issues related to sexual pleasure (Tepper, 2000; Shildrick, 2009) and neglected the experiences of Lesbian, Gay, Bisexual, Transsexual and Queer/Questioning (LGBTQ+) individuals (Kafer, 2003; Siebers, 2008). One could say that sexuality is still not at the forefront of the agenda of disability rights movements (Hollomotz, 2013). Nonetheless, since the publication of The Sexual Politics of Disability, the landscapes of disability-sexuality activism and research have changed significantly, and despite the past neglect, there has been an impressive rise in the scholarly work and activism in this area. This chapter presents research and activist work advocating for the sexual rights of disabled people. Although this intersection of disabilities and sexualities remains a taboo topic (Kulick & Rydström, 2015; Liddiard, 2018; Shakespeare & Richardson 2018), this chapter presents examples, specifically from Canada and the United States of America (USA), demonstrating the vibrancy in disability activism. We focus primarily on examples that illustrate efforts to challenge the barriers preventing people with disabilities from exercising their intimate rights; reconstructing sex and sexualities in ways that subvert and extend normative forms and developing spaces meant to encourage and facilitate sexual expression among people with disabilities. We suggest that in developing a more nuanced and robust understanding of the experiences of people with disabilities regarding sexuality, we can better explore questions of sexual identities and practices, challenge barriers to sexual expression that disabled people face, and finally, reaffirm our commitment to more intersectional research and activism that works to advance both the human and sexual rights of people with disabilities.

Challenging barriers and exercising intimate citizenship The romantic and intimate lives of disabled people have been marked by a history of oppression, abuse and de-sexualisation (Rembis, 2009). One way to make sense of such an oppressive history is by drawing on Plummer’s (2003) concept of ‘intimate citizenship,’ which refers to a person’s equal rights to be intimate and make their own decisions about 98

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their intimate lives, including with whom one is intimate (Ignagni et al., 2016). In the case of people with disabilities, intimate citizenship is often elusive, if not absent: despite the fact that rights to pursue several spheres of intimate life, including sexual identity and expression, friendship, marriage and cohabitation, family life and parenthood, are enshrined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). (Ignagni et al., 2016, p. 132; Liddiard, 2018) The innumerable barriers that people with disabilities face when having relationships, remaining sexual and becoming parents have been well-documented (e.g., Shuttleworth & Sanders, 2010; Jungels & Bender, 2015). In the following section, we first summarise some of the barriers to sexual expression that disabled people face in terms of their sexualities and then move on to explore spaces, events and activists who are working to uphold the intimate citizenship rights of people with disabilities. To begin with, disabled people face a series of ableist attitudes and heterosexist stereotypes. On one hand, disabled people are commonly de-sexualised, stereotyped as asexual and viewed as lacking the desire and/or ‘capability’ for romance and intimacy (Esmail et al., 2010). On the other hand, disabled people, especially those labelled with cognitive or intellectual disabilities, are presumed to have ‘excessive’, licentious, and deviant sexualities (Gill, 2015). It is essential to note that in efforts to uphold disabled people’s right to sexual expression, the disability studies literature has commonly identified asexuality as an oppressive stereotype that is applied to people with disabilities and should be challenged (Kim, 2011; Emens, 2014; Cuthbert, 2015; Lund & Johnson, 2015). While it is important to acknowledge that some individuals may experience the label of asexuality as stigmatising and oppressive, it is equally important to acknowledge the dangers of framing asexuality as a negative experience and as deviant. As Kim (2011) asserts, a ‘universalizing claim that all disabled people are sexual denies that asexuality can be positively experienced by subjects with a disability’ (Kim, 2011, p. 482). Framing asexuality as a negative experience invalidates the lived realities of asexual individuals and it is our hope that this will be acknowledged as scholarship on disability and asexuality expands. Disabled LGBTQ+ individuals are often doubly discriminated against in the sense that they occupy ‘multiple, devalued and stigmatized identities’ (Santinele Martino, 2017, p. 2) and can, therefore, experience forms of ‘layered stigma’ (McCann et al., 2016). These stereotypes and prejudiced attitudes illustrate the pervasiveness of ableism and reinforce heteronormative understandings of gender and sexuality that deny the reality that disabled people are sexual beings. Furthermore, these stereotypes and prejudiced attitudes are often reified into social policies, laws and public spaces that can restrict disabled people’s opportunities for sexual expression and exploration. Negative cultural attitudes regarding disabilities and sexualities become transposed and concretised into structural barriers that limit disabled people’s opportunities for romance and intimacy, for instance, by preventing people with disabilities from accessing important resources and services that help to ensure individuals enjoy a fulfilling sexual lifestyle. Important sexual health services, such as sexual healthcare (i.e., STI testing, pap smears) and sex education, often neglect the experiences of disabled people and can be both physically inaccessible and socially unwelcoming. This is partly due to ‘common stereotypes surrounding disability and sexuality [that] dubiously provide legitimacy for medical inattention and inaccessible infrastructure’ (Campbell, 2017, p. 10). As shown in Anderson and Kitchin’s (2000, p. 1167) study on physical environments 99

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and sociocultural attitudes found in family planning clinics in Northern Ireland, ‘cultural ideologies are reproduced and reflected in how family planning clinics are designed and built, and in the levels and types of services they offer to disabled people.’ State-sanctioned sterilisations of people with disabilities and the numerous eugenic movements associated with such practices serve as the most overt and inhumane examples of how negative attitudes become reified into social policy (see Kevles, 1985; Snyder & Mitchell, 2006). Eugenic legacies continue to influence the experiences, knowledge and expectations of disabled people today (see Chapter 12 in this volume), and most of the literature available has provided compelling illustrations of the historical tenacity of the notion that people with intellectual disabilities are ‘unfit’ for relationships, reproduction or parenting (e.g., Malacrida, 2015). Meaning ‘well-born’, eugenics refers to attempts to manipulate and ‘improve’ upon the genetic makeup of the population that often target not only people with disabilities but also indigenous people; single mothers; racial, religious and ethnic groups and LGBTQ + individuals, among others (see Kevles, 1985; Bashford & Levine, 2010; ­M itchell & Snyder, 2010; Shakespeare, 2014; Malacrida, 2015). Increasingly, activists and scholars are pointing to new and sometimes subtler forms of eugenics. Often described as neo-eugenics or ‘newgenics’, new eugenic policies and practices can work in more covert ways than past eugenic policies and practices. Newgenics ‘moves beyond biological and medical interventions, to encompass systematic barriers to education, services, policy and supports for disabled people in terms of sexuality and reproduction’ (Eugenics to Newgenics, 2017). Examples of neo-eugenic practices that scholars and activists have identified (and continue to combat) include forms of prenatal testing, selective abortion and a lack of social policies that support disabled parents and disabled people who choose to get married. For instance, in Canada and the United States, when some disabled people get married, they risk losing their social assistance benefits. The loss of what is often meagre but vital financial assistance deters some disabled people from marrying and penalises those who do get married (Shakespeare, 2018). Additionally, recent news in Canada has reported cases of Indigenous women who have been surgically sterilised without their informed consent (CBC Radio, 2018). These neo-eugenic practices pose a variety of challenges to the reproductive and sexual opportunities of disabled people, and task activists with the challenge of changing discriminatory sociocultural and legal contexts that constrict disabled people’s opportunities for consensual sexual experimentation, romance, parenthood and love. One of the more notable cases of eugenic sterilisation involved Leilani Muir, the first Canadian woman to successfully file a lawsuit against the Canadian government for the abuses she endured at the Michener Centre in Red Deer, Alberta. Muir was admitted to the Provincial Training School for Mental Defectives (later known as the Michener Centre) shortly before her eleventh birthday in 1955. At the age of fourteen, Muir was sterilised without her consent. Muir was unaware that she had been sterilised until she had left the Michener Centre and was attempting to start a family. In 1996, Muir successfully sued the Alberta government for wrongful sterilisation and wrongful confinement, and received a settlement for the multiple and irreversible traumas that she endured. In her summary of her verdict, Honourable Joanne Veit, the judge presiding over Muir’s case, noted that: The circumstances of Ms. Muir’s sterilisation were so high-handed and so contemptuous of the statutory authority to effect sterilisation, and were undertaken in an atmosphere that so little respected Ms. Muir’s human dignity that the community’s, and the court’s, sense of decency is offended. (Veit, 1996, p. 696) 100

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Muir, who passed away in 2016, wrote an autobiography titled A Whisper Past: Childless After Eugenic Sterilisation in Alberta (2014); and dedicated her life to tirelessly advocating for legal reform to protect the sexual rights of people with disabilities in Canada. The experiences of Muir and others who were institutionalized at the Michener Centre are chronicled in the National Film Board documentary titled, The sterilisation of Leilani Muir (Krepakevich et al., 1996), and in the exceptional text, A Special Hell: Institutional Life in Alberta’s Eugenic Years (Malacrida, 2015). Unfortunately, Muir’s experiences of institutionalisation, dehumanisation, abuse and sterilisation were not atypical. Thousands of individuals who were labelled as disabled or ‘unfit’ to reproduce were sterilised in Alberta, and the province’s notorious sexual sterilisation laws were not repealed until 1972 (Malacrida, 2015). Several subsequent lawsuits followed Muir’s landmark legal case, which proved to be a watershed moment in Canadian disability rights history. To this day, disabled people as well as other marginalised social groups in various geographic locales use the court and legal system as a means to redress these wrongs. For example, in Sweden, the USA and Japan (see Chapter 12), we note how individuals who were forcibly sterilised are currently engaged in legal battles for reparations, acknowledgement and apologies for the emotional and physical harm caused by eugenic programmes (Reuters, 2017; Reuters, 2018; Washington Post, 2018). In addition to using various legal systems in order to challenge injustice and barriers to sexual expression, disabled people and their allies have used other events in order to empower and celebrate disabled people. Events such as the Toronto Disability Pride Parade March or the annual Mad Pride Parade, also held in Toronto, Ontario, serve as examples of environments in which disabled people can both challenge and participate in dominant sexual cultures, and contribute to what Siebers (2012, p. 37) calls, ‘a sexual culture for disabled people.’ Connie Panzarino, an American wheelchair user who participated in a gay pride parade in Boston during the 1990s, used the parade as an opportunity to play up her disability and sex appeal. While participating in the parade, Panzarino wore a sign that read ‘Trached dykes eat pussy all night without coming up for air’ (O’Toole, 2000, p. 212). According to O’Toole (2000, p. 220ff ), in this instance, Panzarino’s disability became an ‘advertisement for a sexual partner’ that effectively turned her disability into a ‘distinct sexual advantage’. This example shows how these events can create an environment that allows disabled people to subvert dominant cultural mores that surround sexuality and disability. Furthermore, this example illustrates how disability – an identity and experience that is so routinely stigmatised and perceived as a negative or a deficit – can also operate as an advantage and source of empowerment. Other events and organisations like the ARCH Disability Law Centre and its legal rights education programme, entitled Respecting Rights, offer advocacy and a team of lawyers who work together to address questions of sexual rights, consent and disability supports in Ontario, Canada. In addition, other self-advocacy groups, such as The Outsiders (Britain), and Right to Love (Canada), have also played a significant role in fighting for intimate citizenship by using various forms of social protest, including but not limited to court cases, film and media production and demonstrations. These rich forms of activism work to ensure that disabled people are recognised as sexual beings who are endowed with equal rights to love and be loved. Some of these advocacy groups have, for example, fought legal cases regarding sex work on behalf of and with people with disabilities (Shuttleworth & Sanders, 2010). These legal pushes for intimate citizenship are not limited to Canada or the United States. For instance, Ireland’s recent ‘Right to Love’ legislation has acknowledged the right of people labelled with intellectual disabilities to be sexual by changing former discriminatory laws and social policies. Previously, romantic and sexual relationships had been banned 101

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for people with intellectual disabilities (Arstein-Kerslake & Flynn, 2015). Other initiatives like Toronto’s Planned Parenthood’s SexAbility program, and Queerability, an organisation devoted to LGBTQ+ persons with disabilities based in Kentucky in the USA, provide what is often inaccessible, yet extremely important, sexual health care and information for disabled people and their partners. Moreover, these organisations foster an accessible and empowering environment in which disabled people can come together to discuss their experiences with love, relationships and sex. However, it is important to note that depending on the socio-legal context, people who assist disabled people with sexual activities and disabled people themselves may be at risk of legal and social ramifications (Shildrick, 2009; Block et al., 2012; Kulick & Rydström, 2015; Fritsch et al., 2016). The variety of these initiatives exemplifies the richness and diversity of disabilitysexuality activism and illustrates some of the ways that disabled people are advocating for and claiming intimate citizenship and socio-sexual rights. In doing so, this activism contributes to more expansive understandings of sexuality and what it means to be sexual, as well as assisting in building community among disabled people and their allies. Despite such a discriminatory and difficult sexual history (Rembis, 2009), disabled people have used different strategies to remain sexual and to challenge dominant understandings of sex and sexualities. As disability activists and scholars have shown, the barriers to sexual expression that people with disabilities face are ‘primarily to do with the society in which we live, not the bodies with which we are endowed’ (Shakespeare, 2000, p. 161), and indeed, the disavowal of sexuality and disability is partly due to ‘an ableist failure of imagination’ (Kafer, 2003, p. 4). In the following sections, we continue to highlight how disabled activists have worked to challenge and overcome these barriers in creative and sexy ways.

‘Cripping’ and (re)constructing sex and sexualities Disability activists have done the critical work of subverting the taboo and stigma commonly associated with disability and sexuality; and they have turned the conversation towards desiring disability (e.g., Samuels, 2003; Fritsch, 2015). At the same time, certain scholars have theorised how disability can ‘transform sex, creating confusions about “what and who is sexy” and “what counts as sex”’ (McRuer & Mollow, 2012, p. 32). Together, disability activists and theorists have reaffirmed disabled people’s position as ‘subjects and objects of a multiplicity of erotic desires and practices’ (McRuer, 2011, pp. 107–108). Through ‘cripping’ sexualities and developing new sexual cultures, they are both contributing to a growing and vibrant sexual culture that had been denied to disabled people for too long. There are innumerable ways in which one would ‘crip’ sexuality. While impairment may cause one to alter or totally recreate their sexual practices, these experiences can enhance sexual pleasure, and diversify the range of sexual practices available in our cultural sexual imagination, as well as reinvent and challenge dominant ideas around what is ‘acceptable’ sex and sexuality. Below we offer some recent examples of how activists have pushed past both attitudinal and structural barriers that limit their opportunities for sexual expression and fulfilment. In addition to subverting the stigma that is so often attached to disability, activists have also constructed a new ‘sexual geography both for the body and for the places where bodies express their sexuality’ (Siebers, 2012, p. 50). Siebers (2008) has proposed that disabled people should work towards the construction of a ‘sexual culture’ that can challenge dominant perceptions of disabled sexuality as well as ableist approaches to pleasure, desires and sexual practices. Thus, rather than trying to assimilate and conform to dominant forms of sexuality, we should rethink what it means to be sexual. Take, for instance, the experiences 102

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of disabled people who develop and bring into view new erogenous zones, or who contest fixed lines between public and private when engaging in assisted sex (Siebers, 2008). As another example, drawing upon her experiences of being in a long-term relationship with ‘Max’, a disabled man, Smith-Rainey (2017) demonstrates how disability and relations of care can create bonds between sexual and romantic partners. In her work on the erotics of care, Smith-Rainey shows that, contrary to dominant ideas, disability is not always a negative factor within these relationships, and can function to enhance intimacy as well as sexual pleasure and exploration (Smith-Rainey, 2011). The sexual lives of disabled people have the potential to challenge dominant cultural ideas of what constitutes sex. Traditional understandings of sex often view intercourse as a phallocentric and heteronormative act that involves two, unassisted ‘able’ bodies, and ends in mutual genital orgasms. Yet, many disabled people have developed their own understandings of what constitutes sex, as well as new and different sets of sexual practices that do not necessarily rely upon phallocentric, heteronormative and ableist norms (e.g., penetration, ejaculation and genital orgasm). Working to broaden our rather narrow understanding of what constitutes ‘sex’ and what it means to be ‘sexy’ would be a good thing for not only people with disabilities, but all citizens. Shifting to more expansive and inclusive understandings of sex and sexual practices promotes a more diverse and less ableist conception of sex and sexuality in our culture. Finally, creating accessible spaces that promote disabled people’s sexual expression and exploration is a pressing issue, and it is this issue that we turn to next.

Creating physical and virtual spaces for sexual expression We still know little about the spaces that disabled people, especially those labelled with intellectual disabilities, can access as romantic and sexual actors (Hollomotz, 2011; Ignagni et al., 2016). However, the literature has noted the importance of creating spaces that are physically, financially and culturally accessible to foster environments in which disabled sexualities are celebrated. In other words, these are spaces where we desire disability. Creating spaces that support and celebrate disabled people’s sexual expression is particularly important because many public spaces that are associated with dating, sexual health and sexual activity (e.g., nightclubs, theatres and sexual health clinics) are physically and financially inaccessible for most disabled people ( Jungels & Bender, 2015; Bahner, 2012). The sprOUT group in Toronto, for example, brings together LGBTQ+-labelled people in dances, parties and other gatherings that work to expand the spaces that queer-labelled people can access. The work of groups like sprOUT is crucial because previous studies have shown that queer spaces can be ableist and, therefore, unwelcoming for queer people with disabilities (Duke, 2011; Abbott, 2015). The Deliciously Disabled Party serves as an example of space that successfully upheld the sexual rights of people with disabilities by challenging some of the barriers that can prevent them from exploring their sexuality. Held in 2015 at the Buddies in Bad Times Theatre in Toronto, Canada, this event was more than just a ‘party’ or ‘orgy,’ as often headlined by the media at the time. Instead, this well-organised event served as a safe space for accessible and sex-positive sexual exploration amongst disabled people and their partners. The organisers ensured that the event was as accessible as possible by keeping the admission fare reasonably priced, equipping the venue with a number of harnesses and hydraulic lifts to get people to and from their wheelchairs and by not charging admission for personal attendants who had been paid by their clients to attend and assist them. The Deliciously Disabled Party also 103

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included a playroom for sex, burlesque performances, a workshop on sex toys and other artistic performances. Although no additional parties have been held since 2015, together the organisers and attendants created an opportunity for dialogue about disability and sexuality, and a space for social interaction and sexual exploration in which disabled people’s bodies and desires were celebrated. This mobilisation by disabled activists to create environments where disabled sexualities are discussed and celebrated has not been restricted to physical spaces. There is also a nascent and growing interest in exploring the experiences of disabled people in online spaces (e.g., Molin et al., 2015). Although access to the Internet is still inequitable and carries a substantial cost, it can provide a unique venue that has the potential to reach audiences across the globe (Chadwick et al., 2013). People with disabilities have, indeed, used a variety of means, such as Podcasts, YouTube channels, zines, blogs and websites, as tools for creating new forms of crip culture/cripestemology/knowledge about disability and sexuality; knowledges that are produced by and centered around the experiences of disabled people and aren’t steeped in restrictive heterosexist understandings of sexuality. In doing so, these activists have spread awareness about disability-sexuality issues and have opened up a safe and accessible space to discuss these issues. For example, in his podcast Disability After Dark, disability awareness consultant Andrew Morrison Gurza tackles a range of subjects related to disability and sexuality. This popular podcast pairs frank discussions about sexuality and disability with sensitivity, humour and insight. Gurza and his guests explore a number or important issues, from pornography to flirting, and often share their own experiences regarding disability and sexuality. The popularity of Disability After Dark is not only a testament to Gurza’s strength as a host and creator, but also signals how sought-after this type of information is. Other media that explore disability-sexuality issues from a disabled person’s perspective, such as The BBC series Ouch!, the feminist zine Dis-n-tangle, and the YouTube series My Gimpy Life, complement work like Gurza’s by adding to the number of perspectives available and shedding light on different aspects of sexuality. The area of disability and sexuality has undoubtedly gained more mainstream attention with recent movies and reality television shows. To mention a few, movies like Picture This (2018), The Sessions (2012), The Intouchables (2011), I am Sam (2001) and Rust and Bone (2012), as well as TV shows like The Undateables (2012), Little and Looking for Love (2014) and In Another Part of Köping (2007–2010) have served as a platform for disabled sexualities that have, in the past, been entirely out of the picture. Nonetheless, disabled media and movie critics have done the important work of analysing how these representations can also be limited and problematic (Waxman-Fiduccia, 1999; Haller, 2010). For instance, mainstream Hollywood movies tend to hire non-disabled actors to play disabled characters, fail to consult disabled people during production and invoke a number of ableist tropes (Haller, 2010). Many Hollywood films also tend to focus on a disabled character, particularly a man’s inability to perform sexuality or ‘do’ gender in a traditional and heteronormative way and, therefore, entire plotlines revolve around questions of erectile functioning (Shakespeare, 1994). Thus, there is a need for more depictions of people with disabilities in media, particularly a need for better portrayals of love, sex and disability. Artwork by Chicago-based artist and academic Riva Lehrer represents another medium that activists have used to create new forms of ‘crip culture’. Lehrer’s artwork seeks to capture and convey what it means to inhabit a stigmatised body, and is undoubtedly influenced by her personal experiences of being a woman with a disability. Through challenging common misconceptions that surround disability – like the ableist idea that disability is an 104

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individual, biomedical tragedy and a condition that is to be cured or overcome – Lehrer contributes to more positive and realistic imagery of disabled people, something that is sorely lacking in popular culture. According to Lehrer (2012, p. 244), ‘disability can act as a radical alchemist’s laboratory of relationship possibility.’ Lehrer’s portraiture invites you to greet her subjects in all their complexity, agency and beauty. In doing so, her work combats stereotypical portrayals of disabled people like ableist ‘inspiration porn’ or depictions of disabled people as ‘supercrips’. Other artistic expressions, such as the Tangled Disability Arts Cabaret, which tours across North America, displays the beauty of disability while simultaneously developing new and more diverse forms of culture that do not centre around ableist or heteronormative understandings of sex and sexuality. As seen in the examples above, various artists, academics, activists and allies have come together to politicise sexuality and to create spaces, both physical and virtual ones, which have allowed for the expression of disabled sexualities. Their work, however, is far from done and, in the next section, we suggest a few areas for consideration within disability activism and research.

Future directions As this chapter has shown, in contrast with a few decades ago, the sexual and intimate lives of disabled people have gained a new and critical place in both disability activism and academic scholarship around the globe (Addlakha et al., 2017). Over the past thirty years, scholars and activists have worked to explore and politicise the intersection of disabilities and sexualities. A myriad of disabled activists, such as Kaleigh Trace, Robin Wilson-Beattie, Eva Sweeney, Bethany Stevens, Tom Banks and Fran Vicary, just to mention a few, have helped to establish sexuality as an issue that requires attention, and that can be spoken about in more open ways. Sexuality is undoubtedly still considered to be a taboo topic in our society, as is disability, which makes the challenge of intimate citizenship a difficult one. Although the activist and scholarly work on disability and sexuality has just begun, exciting opportunities for scholars and activists to help advance and uphold the sexual rights of disabled people remain. First, it has been noted that the sexuality of people with intellectual disabilities has often been treated as an ‘exception’ when it comes to advocating for the sexual rights of disabled people (Gill, 2015). The same could be said about people with limited to no mobility and/or who are non-verbal (Kudlick & Rydström, 2015), and people who do not conform to ‘pretty’ representations of disability (O’Toole, 2014, p. 27). Further consideration should be given to the people who may not be able to participate in certain forms of activism; the people who are not ‘the face of the movement’ or out in the streets. Attention should be placed on how we might broaden the parameters of activism so that individuals with little mobility and/ or individuals who are non-verbal are included and able to claim their intimate citizenship rights. Additional exploration in this area will undoubtedly shed light on other examples of intimate citizenship activism that are not as well known. Secondly, there is a need for more intersectional studies to better understand how different forms of oppression, such as ableism, racism, ageism and homophobia, intersect and interact to shape the sexual and intimate lives of disabled people (Mingus, 2011; Campbell, 2017). It is important to think of intimate citizenship and intersectionality synchronously, considering how our sexual rights are ‘deeply shaped by the interplays of intersecting systems of inequality’ (Santinele Martino & Fudge Schormans, 2018, sec. 6, para. 1). Yet, at times, researchers have had to justify to the reason for using an intersectional framework in studies about disability and sexuality (e.g. Santinele Martino & Fudge Schormans, 2018), the 105

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assumption being that disability is the only relevant social location shaping the intimate lives of disabled people. There is a lot more work that needs to be done using an intersectional approach. For instance, there is a limited body of literature addressing the unique experiences of disabled people who identify as LGBTQ+ (Noonan & Gomez, 2011; Santinele Martino, 2017). Furthermore, there is a very limited amount of literature that explores how race and ethnicity contour disabled people’s sexual experiences. This lack of intersectional attention toward issues of race and ethnicity is exacerbated by the ‘stark whiteness of disability studies as a discipline’ (Liddiard, 2013, p. 5) – a starkness that is evidenced by the disproportionately large number of white disability studies scholars (Bell, 2011; Stienstra, 2012). More work is also needed to include the rich array of sexualities present in the disability community, and to better examine advances and pushbacks regarding potential alliances between queer and disability activism (O’Toole, 2014). As queer people with disabilities have asserted, ‘we’re here, and we’re also queer’ (Gurza as cited in Rosenberg, 2013, para. 6). At the same time, it is equally important to note how, in its push to strongly challenge discourses of asexuality that have served to de-sexualise disabled people, disability activism has sometimes marginalised the experiences of asexual disabled people (Kim, 2011; Lund & Johnson, 2015). Thirdly, there is a ‘missing discourse of pleasure’ which has been identified by different scholars (Tepper, 2000; Turner & Crane, 2016), and that remains, at least to some extent, accurate even today. Exploring intimate and sexual pleasures in an ethical way will allow for a more balanced and holistic understanding of disabled people’s sexual and romantic lives. That said, sexuality is a broad term, involving more than just sex and pleasure. Sexuality is also about intimacy, connection, relationships, a positive sense of self as a sexual agent and love (Shakespeare, 2000), and these deserve equal attention in our struggle for intimate citizenship. Even though this chapter has focused on scholarly and activist mobilisations emerging from Canada and the United States, there is a need for further research and recognition of activist work in non-Western countries. A more global perspective on issues related to disabilities and sexualities would provide a more nuanced understanding of the sexual politics of disability across different cultural, social, political and economic contexts (Addlakha et al., 2017). For example, it is important to consider how geographic locale and cultural contexts can present different sets of circumstances and opportunities for disabled people’s sexual expression. This includes access to sexual health services depending on whether disabled people live in a rural or urban environment, as well as how countries where sex work is decriminalised may create a socio-legal system that promotes sexual exploration among people with disabilities. Finally, given the contentious history of research and disability, it is essential to involve disabled people whenever possible as co-authors or as part of research advisory groups (Shuttleworth & Mona, 2002; Campbell, 2017) to ensure that there is ‘nothing about us without us’ (Charlton, 1998), and that research is both ethical and useful to people with disabilities. Altogether, the examples of extraordinary activist and scholarly work presented in this chapter illustrate the beginning of a burgeoning movement within a broader social movement, which aims to create open dialogues about an often-silenced topic, to develop new sexual cultures, change commonly held conceptions of disability and sexuality and, ultimately, put forward the idea that we can, and should, desire disability.

References Abbott, D. (2015). Love in a cold climate: changes in the fortunes of LGBT men and women with learning disabilities? British Journal of Learning Disabilities 43(2), 100–105.

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Exercising intimate citizenship rights Addlakha, R., Price, J., & Heidari, S. (2017). Disability and sexuality: claiming sexual and reproductive rights. Reproductive Health Matters, 25(50), 4–9. Anderson, P., & Kitchin, R. (2000). Disability, space and sexuality: access to family planning services. Social Science & Medicine 5(1), 1163–1173. Arstein-Kerslake, A., & Flynn, E. (2015). Legislating consent: creating an empowering definition of consent to sex that is inclusive of people with cognitive disabilities. Social & Legal Studies 25(2), 225–248. Bahner, J. (2012). Legal rights or simply wishes? The struggle for sexual recognition of people with physical disabilities using personal assistance in Sweden. Sexuality and Disability 30(3), 337–356. Bashford, A., & Levine, P. (eds). (2010). The Oxford Handbook of the History of Eugenics. Oxford: Oxford University Press. Bell, C. (2011). Blackness and Disability: Critical Examinations and Cultural Interventions. East Lansing, MI: Michigan State University Press. Block, P., Shuttleworth, R., Pratt, J., Block, H., and Rammbler, L. (2012). Disability, Sexuality and Intimacy. In N. Pollard and D. Sakellariou (eds), Politics of Occupation-Centered Practice: Reflections on Occupational Engagement across Cultures (pp. 162–180). Hoboken, NJ: Wiley-Blackwell. Campbell, M. (2017). Disabilities and sexual expression: a review of the literature. Sociology Compass. Retrieved from https://doi.org/10.1111/soc4.12508 on 14 June 2017. CBC Radio. (2018). Indigenous women kept from seeing their newborn babies until agreeing to sterilisation, says lawyer. CBC Radio. 13 November 2018. Chadwick, D., Wesson, C., & Fullwood, C. (2013). Internet access by people with intellectual disabilities: inequalities and opportunities. Future Internet 5(3), 376–397. Charlton, J. I. (1998). Nothing about Us without Us: Disability Oppression and Empowerment. Berkeley, CA: University of California Press. Cuthbert, K. (2015). You have to be normal to be abnormal: an empirically grounded exploration of the intersection of asexuality and disability. Sociology 5(2), 241–257. Duke, T. S. (2011). Lesbian, gay, bisexual, and transgender youth with disabilities: A meta-synthesis. Journal of LGBT Youth 8(1), 1–52. Emens, E. F. (2014). Compulsory sexuality. Stanford Law Review 66(2), 303–386. Esmail, S., Darry, K., Walter, A., & Knupp, H. (2010). Attitudes and perceptions towards disability & sexuality. Disability and Rehabilitation 32(14), 1148–1155. Eugenics to Newgenics. (2017). What is Newgenics? Retrieved from https://eugenicsnewgenics. com/2014/05/14/what-is-newgenics/ on 24 November 2018. Finger, A. (1992). Forbidden fruit. New Internationalist 233, 8–10. Fritsch, K. (2015). Desiring disability differently: neoliberalism, heterotopic imagination and intracorporeal reconfigurations. Foucault Studies 1, 43–66. Fritsch, K., Heynen, B., Ross, A., & van der Meulen, E. (2016). Disability and sex work: developing affinities through decriminalization. Disability & Society 31(1), 84–99. Gill, M. (2015). Already Doing It: Intellectual Disability and Sexual Agency. Minneapolis, MN: University of Minnesota Press. Haller, B. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville, KY: Avocado Press. Hollomotz, A. (2011). Learning Difficulties and Sexual Vulnerability: A Social Approach. London: Jessica Kingsley. Hollomotz, A. (2013). Exploiting the Fifty Shades of Grey craze for the disability and sexual rights agenda. Disability & Society 28(3), 418–422. Ignagni, E., Fudge Schormans, A., Liddiard, K., & Runswick-Cole, K. (2016). ‘Some people are not allowed to love’: intimate citizenship in the lives of people labelled with intellectual disabilities. Disability & Society 31(1), 131–135. Jungels, A. M., & Bender, A. A. (2015). Missing intersections: contemporary examinations of sexuality and disability. In J. DeLamater & R. F. Plante (eds), Handbook of the Sociology of Sexualities (pp. 169–180). New York, NY: Springer International Publishing. Kafer, A. (2003). Compulsory bodies: Reflections on heterosexuality and ablebodiedness. Journal of Women’s History 15(3), 77–89. Kevles, D. (1985). In the Name of Eugenics: Genetics and the Uses of Human Heredity. Cambridge, MA: Harvard University Press. Kim, E. (2011). Asexuality in disability narratives. Sexualities 14(4), 479–493.

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Martino & Campbell Krepakevich, J., Whiting, G., McCrea, G., & National Film Board of Canada. (1996). The sterilisation of Leilani Muir [DVD]. Montréal: National Film Board of Canada. Retrieved from https://www. nf b.ca/film/sterilisation_of_leilani_muir/ on 24 November 2018. Kulick, D., & Rydström, J. (2015). Loneliness and its Opposite: Sex, Disability, and the Ethics of Engagement. London, UK: Duke University Press. Lehrer, R. (2012). Golem girl gets lucky. In R. McRuer & A. Mollow (eds), Sex and Disability (pp. 231–255). London: Duke University Press. Liddiard, K. (2018). The Intimate Lives of Disabled People. New York: Routledge. Lund, E. M., & Johnson, B. A. (2015). Asexuality and disability: strange but compatible bedfellows. Sexuality and Disability 33(1), 123–132. Malacrida, C. (2015). A Special Hell: Institutional Life in Alberta’s Eugenic Years. Toronto: University of Toronto Press. McCann, E., Lee, R., & Brown, M. (2016). The experiences and support needs of people with intellectual disabilities who identify as LGBT: a review of the literature. Research in Developmental Disabilities 57, 39–53. McRuer, R., & Mollow, A. (2012). Sex and Disability. London: Duke University Press. McRuer, R. (2011). Disabling sex: notes for a crip theory of sexuality. GLQ: A Journal of Lesbian and Gay Studies 17(1), 107–117. Mingus, M. (2011). Changing the framework: disability justice. How our communities can move beyond access to wholeness. Retrieved from https://leavingevidence.wordpress.com/2011/02/12/changing-­theframework-disability-justice/ on 24 November 2018. Mitchell, D., & Snyder, S. (2010). The Eugenic Atlantic: race, disability, and the making of an international Eugenic science, 1800–1945. Disability and Society 18(7), 843–864. Molin, M., Sorbring, E., & Löfgren-Mårtenson, L. (2015). Teachers’ and parents’ views on the Internet and social media usage by pupils with intellectual disabilities. Journal of Intellectual Disabilities 19(1), 22–33. Morris, J. (1993). Feminism and disability. Feminist Review 43(2), 57–70. Muir, L. (2014). A Whisper Past: Childless after Eugenic Sterilisation in Alberta. Victoria, BC: Friesen Press. Noonan, A., & Gomez, M. T. (2011). Who’s missing? Awareness of lesbian, gay, bisexual and transgender people with intellectual disability. Sexuality and Disability 29(2), 175–180. O’Toole, C. J. (2000). The view from below: developing a knowledge base about an unknown population. Sexuality and Disability 18(3), 207–224. O’Toole, C. J. (2014). Fading Scars: My Queer Disability History. Fort Worth: Autonomous Press. Plummer, K. (2003). Intimate Citizenship: Private Decision and Public Dialogues. Seattle and London: University of Washington Press. Rembis, M. A. (2009). Beyond the binary: rethinking the social model of disabled sexuality. Sexuality and Disability 28(1), 51–60. Reuters (2017). Sweden to offer compensation for transgender sterilisations. Reuters News, 27 March 2017. Retrieved from https://www.reuters.com/article/us-sweden-transgender-sterilisation-­ idUSKBN16Y1XA on 24 November 2018. Reuters (2018). Victims of Japan’s forced sterilisations demand justice after decades of silence. Reuters News, 8 May 2018. Retrieved from https://www.reuters.com/article/us-japan-sterilisations/victims-­ of-japans-forced-sterilisations-demand-justice-after-decades-of-silence-idUSKBN1I90MU on 24 November 2018. Rosenberg, M. B. (2013). LGBT’s living with disabilities: also here, also queer. Huffington Post, 4 May 2013. Samuels, E. (2003). Desiring disability: queer theory meets disability studies. GLQ: A Journal of Lesbian and Gay Studies 9(12), n.p. Santinele Martino, A. (2017). Cripping sexualities: an analytic review of theoretical and empirical writing on the intersection of disabilities and sexualities. Sociology Compass. Retrieved from https:// doi.org/10.1111/soc4.12471 on 25 November 2018. Santinele Martino, A., & Fudge Schormans, A. (2018). When Good Intentions Backfire: University Research Ethics Review and the Intimate Lives of People Labeled with Intellectual Disabilities. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 19(3), Art. 9. Retrieved from http://dx.doi.org/10.17169/fqs-19.3.3090 on 24 October 2018. Shakespeare, T. (2018). Disability: The Basics. New York, NY: Routledge. Shakespeare, T. (2014). Disability Rights and Wrongs Revisited. New York, NY: Routledge.

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Exercising intimate citizenship rights Shakespeare, T. (2000). Disabled sexuality: toward rights and recognition. Sexuality and Disability 18(3), 159–166. Shakespeare, T. (1994). Cultural representations of disabled people: dustbins for disavowal. Disability and Society 9(3), 283–299. Shakespeare, T., Gillespie-Sells, K., & Davies, D. (1996). The Sexual Politics of Disability: Untold Desires. London and New York: Cassell. Shakespeare, T., & Richardson, S. (2018). The sexual politics of disability, twenty years on. Scandinavian Journal of Disability Research 20(1), n.p. Shildrick, M. (2009). Dangerous Discourses of Disability, Subjectivity and Sexuality. New York, NY: St. Martins Press. Shuttleworth, R., & Mona, L. (2002). Disability and sexuality: toward a focus on sexual access. Disability Studies Quarterly 22(4), n.p. Shuttleworth, R., & Sanders, T. (2010). Sex and Disability: Politics, Identity and Access. Leeds: The Disability Press. Siebers, T. (2012). A sexual culture for disabled people. In R. McRuer & A. Mollow (eds), Sex and Disability (pp. 37–53). London: Duke University Press. Siebers, T. (2008). Disability Theory. Ann Arbor: University of Michigan Press. Smith-Rainey, S. (2011). Love, Sex, and Disability: The Pleasures of Care. London: Lynne Rienner Publishers. Smith-Rainey, S. (2017). In sickness and in health: cripping and queering marriage equality. Hypatia 32(2), 230–246. Snyder, S., & Mitchell, D. (2006). Cultural Locations of Disability. Chicago, IL: University of Chicago Press. Stienstra, D. (2012). Race/Ethnicity and disability studies: towards an explicitly intersectional approach. In N. Watson, N. A. Roulstone, & C. Thomas (eds), Routledge Handbook of Disability Studies (pp. 376–389). New York, NY: Routledge. Tepper, M. S. (2000). Sexuality and disability: the missing discourse of pleasure. Sexuality and Disability 18(4), 283–290. Thomas, C. (1999). Female Forms: Experiencing and Understanding Disability. Buckingham: Open University Press. Thomas, C. (2006). Disability and gender: reflections on theory and research. Scandinavian Journal of Disability Research 8(2–3), 177–185. Turner, G., & Crane, B. (2016). Pleasure is paramount: adults with intellectual disabilities discuss sensual intimacy. Sexualities 19(56), 677–697. Veit, J. (1996). Muir v. The Queen in Right of Alberta. Dominion Law Reports 132(4th series): 695–762. Washington Post (2018). California lawmakers seek reparations for people sterilized by the state. The Washington Post, 25 April 2018. Retrieved from https://www.washingtonpost.com/ national/health-science/california-lawmakers-seek-reparations-for-people-sterilized-by-thestate/2018/04/25/2a873578-4869-11e8-8082-105a446d19b8_story.html on 24 November 2018. Waxman, B. F., & Finger, A. (1991). The politics of sexuality, reproduction, and disability. Sexuality Update, National Task Force on Sexuality and Disability 4(1), 1–3. Waxman-Fiduccia, B. W. (1999). Sexual imagery of physically disabled women: erotic? perverse? sexist? Sexuality and Disability 17(3), 277–282. Waxman-Fiduccia, B.W. (1991). It’s time to politicize our sexual oppression. Disability Rag 12(2), 23–26.

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7 ‘I SHOW THE LIFE, I HEREBY EXPRESS MY LIFE’ Activism and art in the political debate between social movements and institutions on D/deaf bodies in Italy Fabrizio Loce-Mandes Introduction Deafness, like all disabilities, is suffering. It seems to be easy to be a victim: ‘They have not hired me because I’m deaf, they discriminate against me and they isolate me because I am deaf ’. I did it a few times, but it takes time and effort to overcome victimisation. Some deaf people never leave this state of being victims. Deaf people suffer because they think too much about their feelings; it is because we feel observed, but sometimes this ‘seeing’ does not correspond to reality. I have always tried to eliminate this attitude in my daily life, and I do it by organising activities, collaborations, explaining and showing everyone what deafness is and what experiences a deaf person has had.1 This 2011 activist quote comes from Marco2, the protagonist of this chapter and my research on politics and practices of deafness. I have been undertaking ethnography in a region of central Italy since 2010 and most importantly, my collaborator in this ethnographic process and friend was Marco. Marco has a prelinguistic sensorineural profound 3 hearing loss with a little residual in the right ear where occasionally he wears a hearing aid. His rather impressive physical presence demonstrates a past made up of activities such as various sports and going to the gym. Marco is deaf and at the beginning of my research, as is the case with many hearing people, I knew very little about deafness. It was Marco who educated me and called me to meetings where he would regularly hand me materials on deafness, such as magazines and books, or simply just talk over a drink together, so as to chat to me about his life. Despite what he called a ‘strong integration with the hearing’, Marco told me that he suffered, and sometimes still does, a social exclusion caused by his deafness. The spaces traversed by social actors, such as schools, work contexts and associations for the deaf, have been, and still are delineated by negotiations and relations that tend to include, but also to socially exclude. I met Marco at a sculpture exhibition where he was balancing on his knees, intent on working clay for an art piece in the exhibition. I had contacted him previously, and when

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I tapped him on the shoulder to make him aware of my presence, he knew it was me and said, ‘Fabrizio?’ We went to have a coffee and he talked constantly, as if to give me all the information on differences between the Deaf community and deaf people in Italy, always referring to ‘us’. His descriptions of feelings experienced during adolescence, and still today, were often accompanied by dense sensory descriptions, mainly related to sight, as one of his most ‘important’ senses. These descriptions, referring to the world of work and relationships, were told not only to explain his emotional path connected to deafness and feeling social isolation, but also to represent and make me understand how these were actually also points in common with the other people who were D/deaf.4 During our meetings we talked about different topics, such as management of one’s body and how societies could make a difference for D/deaf people. For example, to explain the hypervisibility needed of sight, he said: Deaf people are always tense, watchful, stand at attention, because they do not know if there is a danger close to them and so we’re always alert. If you see a deaf person walking, you see that the person is continually turning from side to side all the time to perceive the dangers. We must stay alert, if you look well at a deaf person you recognise them even by the way in which they walk. The view is important, we rely on the use of sight to communicate.5 Managing the body, relationships, but also space, constitute skills and practices learned over time. The way to ‘walk’ and ‘see’, understand and form a relationship with space, through the perception of environmental and structural details, are considered by Marco as much as a capacity, observable through a ‘tension of the body’, but also a problematic aspect of deafness, which tends to affect social relationships. As such, Marco was on a continuous search for an association or voluntary organisation that would help him to ‘integrate’ but also strengthen his ‘Deaf identity’. Having lived until adolescence without contact with other deaf people, entry to the Ente Nazionale Sordi (ENS) (National Association for Deaf ) was an opportunity to meet other deaf people. Deafness is a curious thing, because the problem of deafness, you are always slamming with world’s hearing. You bang, bang, and you never have what you want. So, in the world of deafness, to get what you need is difficult, like subtitles, or the recognition of the Italian Sign Language (LIS). You also don’t know how to get access to some resources. I had to do everything by myself because my parents did not know anything. When I met deaf people and ENS, they explained where I had to go and what to do.6 The constant search for a group to belong to, to get out of the trajectories of marginalisation and stigma had become a fundamental objective. The paths to raise awareness on issues, such as the learning of LIS and the national meetings of ENS, are inscribed in forms of daily activism that, as we will see later, have as their goal the integration of D/deaf people. The situation of Deaf people in Italy is interesting because there isn’t a law that recognises LIS.7 This is the reason why there are different social movements battling for the rights of D/deaf people: (i) people who ascribe to a common Deaf culture using sign language and (ii) deaf, hard-ofhearing or hearing-impaired people that ascribe to a more medicalised identity. The analysis of D/deaf communities also provides an examination of: what is defined and perceived as disability; the rejection of the disability label and the ‘emic’ concept of a ‘Deaf  Culture’ like a linguistic minority. These issues have been the themes of a vast chain of studies and

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constitute a robust literature in what can be considered a sub-discipline of disability studies (Ginsburg & Rapp, 2013). Little did we realise at that time that what seemed to us a personal dilemma was also a battle of ideologies being fought out in article after article, in book after book. For us, the matter was personal and pressing. So much was at stake and there seemed to be so little time. (Blume, 2010, p. 5) With the above statement, Blume (2010) describes in a few lines the issues inherent in research and how debates on the perception of D/deafness differ between pathology and medical disability to the broad socio-cultural identity phenomenon. In this way, Blume (2010) explains the political and social values of the debates and why the medical approach of seeing deafness as a ‘problem’ to be ‘cured’ or addressed through cochlear implants (CI) is so problematic for Deaf people who consider it an attack on their culture and way of being. In this chapter, I will begin by setting out the relationship between disability and anthropology and explain why doing fieldwork on deafness can be considered activism. The following section illustrates how the actions of social actors, through art related to a social use of anthropological research, problematises representations of disability and the political debates between social movements and institutions about the D/deaf body. First, I will begin by explaining why fieldwork is activism.

Disability and anthropology: fieldwork as activism In the last thirty years, there has been a significant increase in ethnographic studies on physical impairment and disability (Shuttleworth & Kasnitz, 2004; Blume & Hiddinga, 2010; Ginsburg & Rapp, 2013). This is despite the fact that research on disability was often considered a sub-group of medical and applied anthropology (Ginsburg & Rapp, 2013). According to Shuttleworth and Kasnitz (2004, p. 153), this proliferation has not always benefited the anthropology of ‘disability-impairment’ and they state: Despite this increased attention to the topic and theory of disability in anthropology, the anthropology of impairment-disability still suffers from terminological confusion, theoretical oversimplification, and a radical relativist bias that is adverse to critical approaches. Disability seems to constitute a ‘forced object’ for anthropologists as it brings into play the cultural variability of the ways of construction and perception of the body and its autonomy, as it manifests itself as a presence of ‘internal’ cultural diversity, a peculiar dimension of the ‘otherness’ found both at home and abroad (Seppilli, 2003). The anthropology of disability puts anthropological discourses into play on the universal and at the same time, different forms of biological and social relationships, that is, the local and global ways of conceptualising bodies and people. Between cultural, medical and institutional anthropology, anthropology of the body and experience, political anthropology of health and cultural studies on identity, the numerous international anthropological works of disability, despite their considerable heterogeneity, are characterised by the questioning of an essentialist or (bio)medical vision of disability and 112

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the insistence of its contextual nature and therefore highly variable interpretation from a cultural point of view. As Reid-Cunningham (2009, p. 99) states: The concept of culture is important to anthropological study of dis-ability because the lens of culture may be applied to disability in a variety of ways: Disability may be considered a culture, culture may be considered a disability, and cultural norms and values influence conceptions of disability. For me, what emerges is how disability becomes culturally operationalised and this is precisely the connection between the integration of people with disabilities and the socio-­political ­d imension of impairment, disease or chronic illness (Pizza, 2005). What distinguishes social movements is the correlation between economic and political crisis, and the possibility of triggering new practices and innovative political imaginaries; so social movements are characterised by, ‘Aspirations, the will to elaborate different ways of imagining the future, the ability to identify spaces where to experiment new forms of idea-action’ (Palumbo, 2015, p. 18). In this way they manage to build practices that arise from the grassroots, ‘To elaborate, propose and otherwise practice innovative forms of imagination and, at least in part, of political action’ (Palumbo, 2015, p. 18).8 Such, ‘political actions’ and ‘imagination’, as defined by Palumbo (2015), are the factors of study and interest in socio-anthropological research. The aim is, ‘To explore ethnographically those fields of causation – scientific, political, historical, economic, socio-cultural – ­dynamic, conflictual and procedural’ (Ravenda, 2018, pp. 42–43)9 to show not only the daily practices of activism and ability to imagine the future, but also to identify and undermine the ‘hegemonic forces’ with which they collide. Globally, in particular in the United States of America (USA) and Europe: Has seen more than a century of social activism to improve health and health care, beginning in the Industrial Revolution with concerns about occupational health and continuing through to more recent fight for disability rights, mental health rights, women’s health and national health care. Embodied Health Movements are a subset of a relatively recent and understudied type of social movement that we term ‘health social movements’ (HSMs). These are social movements centered on health that challenge medical policy and politics, belief systems, research and practice. (Brown et al., 2012, pp. 15–16) According to Brown and Zavestoski (2004), HSMs are characterised both by an increase in the accessibility of quality of care, as well as by social changes in correlation with public opinion, state and international institutions and activism of patients and their families. Embodied Health Movements (EHMs) are a subset of health social movements and important in how they challenge science to understand disease, illness or disability by calling into question, for example, scientific diagnosis or diagnostic techniques (Brown & Zavestoski, 2004). Disability identity is more linked to social and political change for inclusion in society and activism for legal and socio-cultural rights. The increase, on an international level, of these movements has led researchers to investigate the phenomenon of ‘disability’ from differing perspectives and theoretical approaches (Ginsburg & Rapp, 2013), so they can analyse activist movements as major actors for social changes. This has meant that EHMs have also changed to focus on not only challenging science but also for example orthodoxy on ‘space’ and ‘mobility’. 113

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For instance, Rattray (2013) examines the protests by people with physical and visual disabilities to show the inaccessibility of urban spaces and at the same time considers, ‘the relationship between bodily differences and the social production of space’ (Rattray, 2013, p. 25). In this case ‘disability’ brings into play a reading and a measure of scale of space, producing a shift from the geometrical notion of space to an anthropological meaning with a phenomenological-cultural character; space as a function of the body. In this way, the relationship between the limits and the possibilities inherent in the surrounding environment for the design and creation of public spaces, designed by and for ‘skilled’ people, becomes an interpretative paradigm of strategies of exclusion that, ‘may take explicit form in direct practices of discrimination’ (Rattray, 2013, p. 27). Fieldwork links into uncovering practices of discrimination through the questioning of interplay of disability and culture. In what follows, I focus on how I engaged in ethnographic fieldwork, not only as a description and uncovering of social movements, but also as an applied form of activist practice.

‘I had to speak’: deafness as political and medical fieldwork The practices and policies of deafness are the focus of ethnographic research on which this chapter is based. ‘Deafness’ is used by people with hearing loss, health care professionals, associations and institutions with different connotations: not only to indicate a physical condition but also to the recognition of a culture, a language and a set of practices that are shared and accepted by a community. If we can confirm the existence of Deaf culture, as a set of practices and behaviours that are shared and recognised, it must be held that those same embodied practices and skills (in particular those related to the senses, like ‘signing’, ‘lip-reading’, a wide foveal vision and a strong embodiment of performance), must be considered not only in actions and experiences, but also as the result of complex power relations that have been historically determined. As stated above, there is a constant tension between an understanding of ‘Deaf ’ as socio-political in nature and ‘deafness’ as a medical diagnostic category, both of which have implications for people’s daily lives. In the context of the biomedical as a political field, anthropologists have illustrated how medical knowledge and biotechnological progress useful for improving auditory skills influenced and directed therapies and cures for deafness (Nakamura, 2006; Blume, 2010; Friedner, 2015). Processes that have also led to the development two distinct pathways for linguistic acquisition: (i) an oral one, based on sound and acoustic improvement and (ii) Signed Language, based on a visual-gestural mode of communication. Diverse approaches are inscribed in the bodily experiences of D/deaf people and illustrate a hierarchy of acquisition of skills as well as integration into able-bodied norms. When undertaking my research on deafness in Italy, I was doing fieldwork at associations, meetings for the spread of LIS, theatres and medical institutions (i.e., the places where hearing tests, diagnostic teams, meetings with families and operating surgical theatres for CI placement were located). I found that ethnographic fieldwork is defined by differing boundaries drawn by people that cross multiple contexts, for example, the biomedical-clinical, institutional, artistic, but also the personal to problematise the representation of deafness. I want to illustrate this through the use of the two images in Figures 7.1 and 7.2. The below painting10 was made by a deaf artist and represents the connections between Sign Language and surgery for improving his hearing, in this case by cochlear implant (CI); it is very colourful but clear on his view of medical institutions. Figure 7.2 is a snapshot of a visual performance organised by a well-known CI company; the artist illustrates his view of deafness, in this case with a cochlea in the hands of clinic and 114

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Figure 7.1  Giorgio Regoli, “Impianto Cocleare” (Cochlear Implant), February 2012.

Figure 7.2  A rtist illustrating his views of deafness for an advertisement of Cochlear implants.

patient. Considering deafness exclusively in a biomedical or cultural perspective, and the relative choice of Sign Language as a communicative method or linguistic minority, means entering into a wide debate consisting of a complex network of historically determined fields of forces, which are at the same time dialogical and conflictual, and which tend to involve different spheres of private, social and political life. They go far beyond the boundaries of a ‘Deaf culture’, which Marco explains well: When I was little, my mother saw that something was wrong, so I did the audiological test and they understood that I was profoundly deaf. So, at the age of three I started 115

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speech therapy, I had to recover a lot because I did not speak. My mother worked a lot with me, because I had to speak. She was so tired that she had health problems. She always helped me, as for my father, he would rather I be in an institution. 11 Marco often described this training, adding new details as the years passed, highlighting his passion for art, and especially the difficulties and the autonomy gained as a deaf boy who has learned the oral language. During our meetings, he tended to stress that, ‘He lives in a world made for the hearing and not compatible with the needs of deaf.’ For this reason, associations and D/deaf people are advocating for sensorial and communicative accessibility. There is no ghettoisation except to the extent that certain places and events are designed specifically and exclusively for some people, in this case for the hearing. The social spaces crossed by Marco, from speech therapy, the process of exclusion from a Deaf signing environment, and the marginalisation suffered in social spaces designed for the hearing, were just some of the triggers for his activism within the association. He also identified further triggers to activism, such as episodes of bullying and especially violence during his adolescence. About a year and a half after our first meeting, by which time we had established a relationship of trust and confidence, he explained: When I was a teenager, there was a person who I believed to be a friend, we did things together, he asked and I did it. So, as not to displease him because he was the only one who talked to me. Then I understood what we were doing, so I started not to talk to him anymore. I did not go to school anymore; it took years to get over it, years of psychological therapy, now I talk about it with a lot of peace.12 From the ethnographic data, it is not only possible to bring out the complex relationship between concrete and daily life, the continuous search for a ‘space’, social acceptance, but also the complicated relationship with the ethnographer. If the events can be considered as containers of experiences, it is possible to document a sense of joy in resistance when many D/deaf people find a D/d association, because, using the words of Marco: A deaf person has limited access to society. A huge part of society is not deafness friendly. A deaf person, it does not matter if you use sign language or not, who enters in a space with other deaf people and there is attention to deafness-related needs, like the different associations, is the only space where, ahhh (breath and movement of relief ) I feel accepted, integrated. It’s the only place where a D/deaf person is human.13 The construction of a Deaf identity and culture (Padden & Humphries, 1988; Padden, 1996; Ladd, 2003) is understood in a procedural way, as a form of resistance to the logic of power put in place by biomedicine where, ‘[I]dentification, testing, classification, institutionalisation, and surgical intervention are successive steps in increasing expropriation of the Deaf child’s body, the “colonization of the body”’ (Lane, 1992, p. 82). The formation of ‘Deaf community’ is intended as a form of resistance, a process triggered within a field of forces where biomedicine sees the body of a person objectively, in an ‘impaired’ way (as deaf ) and in need of a ‘cure’ process (Lane, 1992). Friedner (2010) tries to go further by showing how the process of individualisation, classification and ‘medicalisation’ cannot be considered exclusively as a form of oppression, but also with its productive capacity, that is, in laying the foundations for the formation of ‘Deaf community’, a ‘Deaf identity’ and community policies. During the research, Marco and myself decided on a common pathway to reach two goals: (i) gathering ethnographic materials for my research, and (ii) for his resistance and activism, 116

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structuring what we termed ‘sensitisation’ that would be useful to Marco to explain ‘D/deafness’ to members of civil society and the public. Over the years, through the confrontation and reflection between ethnographer and artist, a relationship developed that went beyond collaboration. While I tried to comprehend deafness and the relationship among society and hearing people, Marco sought specific communication forms to narrate the experience of deafness. We decided to structure a participatory theatre lab with D/deaf and hearing people. Our aim was to collect material to use for a retrospective event and to observe both the communication methods used by the actors, as well as discourses carried out within this space, considered intimate and experimental. In a theatre lab, Marco decided to develop a personal story into a play, that he had experienced in high school related to violence and the inability to communicate. Figure 7.3 illustrates the first scene of the play, where the purpose of the actors is to eliminate the possibility of reaction and communication of the deaf protagonists’ hands, hearing and vision to understand what is happening, and he’s forced to endure ridicule and violence. In another act, Marco showcases one of his recurring nightmares where he seeks eye contact with people to communicate but has them avoid it, thus becoming helpless in front of the impossibility of communication. I want to explain what the above tells us about space and belonging. The movement for the awareness on deafness and Deaf culture, within the National Association of the Deaf, can be understood together with its activities as an experimental laboratory of ‘good political practices’, in which the stakes are not only the sensitisation of the members of civil society, but also the defence of Sign Language. Given the connection between disability, biomedical policies and social spaces, I consider it useful to analyse the ways in which these practices of re-appropriation of spaces and re-modelling the concept of deafness are acted upon. A recent analysis on space proposed by Low (2011) distinguishes two different ways of using and constructing space: The term social production was useful in defining the historical emergence and ­political-economic formation of urban space. The term social construction was reserved for

Figure 7.3  During the theatre lab the actor plays a personal story.

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the phenomenological and symbolic experience of space as mediated by social processes such as exchange, conflict, and control. […] Both processes are social in the sense that the production and construction of space are mediated by social processes, especially because they are contested and fought over for economic and ideological reasons. (Low 2011, p. 392) A framework emerges for the establishment of laboratories, spaces for the personal and s­ ocial health of a community as well as political actions to sensitise citizenship on disability. The theatre play, the laboratory experiments, and as I will describe in the next paragraph, a ceramics exhibition become the result of actions that represent the ‘collectivity’ that has managed to build a ‘virtuous’ path. In this way, participants and activists try to re-model the hegemonic path of the oral language, working on the hearing users participating in the meetings. I will explain what I mean by the above in the next section focusing on social production and construction of spaces as political practices.

Deafness and representation of identity The visual arts, such as cinema, theatre, painting and, in the case of this ethnography, also ceramics, are used both to narrate experience – to show political alignment within an ‘ideological battle’ between disability and culture, between therapeutic approaches and standardisation processes (Nakamura, 2006; Blume, 2010; Friedner, 2010) – and in this sense to constitute artistic labs. Within the specific framework of deafness, visual anthropology has long reflected on D/deaf art, pictorial, sculptural and theatrical productions, specifically dedicating an issue of Visual Anthropology Review in 1999. Some authors specialised in Deaf Studies (Padden & Humphries, 1988; Cohen, 1989; Fjord, 1999; Silver, 1999; P ­ adden & Humphries, 2005) emphasised not so much the expressive modality, but the thematic ­peculiarity that reflects and represents the movement from a rhetoric of victimisation to resistance – a refusal of ‘hearingization’ of Deaf people (Durr, 1999) and emphasises that set of ‘values ​​of Deaf culture’ (Schertz & Lane, 1999). As Mirzoeff (2011) states, paradoxically the pathologisation of deafness was concomitant with the beginning of Deaf cultural policies, therefore in some specific cases, art is part of a political process that is antagonistic to the phenomenon of normalisation of deafness. In particular, theatre and visual arts are used to narrate and transmit the experience of Deaf culture (Lane, 2005), as it reinforces identity and maintains solidarity amongst members. It is also used both by researchers and by social actors themselves, in a political way, to create a separation from a biomedical view of deafness. Deafness is articulated by different institutions and defined by the balance of power between social actors – family, D/deaf people, audiologists, speech therapists and so on. It is possible to analyse the social production of health and disease as well as to show the social construction of hegemony of cultural and scientific practices of ‘therapy’ and ‘cure’, and how the activists accept or fight D/deaf discourses and practices. As I stated above, Marco narrates his experiences through three moments which he defines as ‘crucial’: (i) the biological condition of the disease, (ii) the political and health element of oral enablement and (iii) LIS as communication choice. The visual material and performance used by Marco and within social movements of deafness can provide a fertile ground to analyse the ways through which the experiences of the body and the notion of ‘health’ are understood, constructed and negotiated. Furthermore, the critical analysis of different sources of power and health management, highlights the tensions between biomedical interventions, biotechnology, social identities and the construction of bodies.14 118

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The debate triggered by D/deaf artists is whether to be included in the construction of the health path or try in some way to differentiate it and show its facets. As highlighted by Gibb (2001, p. 3) on the practice of activism: Social movements are characteristically engaged in political or cultural conflict with other actors over a range of issues. The latter may include the control and distribution of resources, and the meaning of core cultural or political values, as well as social changes of a more systemic nature, involving the transformation or defense of structural relationships of domination. The conflictual action of sociopolitical movements typically involves regular recourse to forms of public protest (for example, demonstrations, occupations or strikes). Art and for example, making ceramics, can also be forms of public protest and resistance, which I will explain in what follows. When I met Marco, in 2010, he had recently lost his job as a potter and was training as a baker. As an artist, he was fascinated by the parallels between pottery and breadmaking, also because for both he was hired for his abilities. He managed to learn in a few days the manipulation of the dough for bread as part of his training. Ensuring employment and training in a new skill was also recommended by his psychologist. He told me that he was allured by the manipulation of materials and the similar nature of the elements used in both products: water, earth, heat, flour, air for levitation and ‘breathing’ for the pieces of art, but especially by the manipulation of his hands. This led him to decide to make an art exhibition about how both materials are very similar. We decided to use a jump-cut or ‘video art’, as defined by Marco, to show the two aspects of work, so as to bring out the links between the two types of bread. That is, the real one made out of flour and the artistic one, made out of clay, and the reciprocal working environments that need a specific ability. The figures are shown as they appeared to visitors, but if the exhibition as a whole could transmit the link between skill and career, the one that eluded Marco was the connection between his D/deafness and his life path (Figures 7.4–7.9).

Figure 7.4  The artist mixes the dough for the plaster.

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Figure 7.5  The protagonist touches the bread dough to check its consistency.

Figure 7.6  The protagonist manipulates the dough to shape the bread.

After several years of collaboration in art and theatre productions, Marco decided to use and link his work to develop an idea of his life path and he explained, ‘I show the life, I hereby express my life. I want to do an exhibition that tells the entire path I followed, from my disease to LIS, I want to show that there is more beyond disability.’15 120

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Figure 7.7  The artist manipulates the clay to shape the bread by plaster casts.

Figure 7.8  M  arco’s art exhibition with clay bread in the foreground and the video with real bread in the background.

Through the sketches and part of an artistic vision that is still in progress, it is possible, in Figures 7.10–7.12, to observe the intention of representing the cochlea and ‘malformation’ that causes the deafness of Marco. 121

Figure 7.9  Marco’s art exhibition with clay bread and real bread that blend together.

Figure 7.10  Sketch on paper of the cochlea’s hair cells.

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Figure 7.11  The artist is creating a giant cochlea with clay.

Figure 7.12  Sketch on paper of the giant cochlea.

Specifically, Figures 7.10 to 7.12 are an interpretation which wants to show the public the inner ear: a stylised cochlea. The darkest part of the drawing shows the possible opening to access the inside so as to observe and touch the hair cells, subsequently also represented in a second large sculpture. In the second phase of exhibition Marco decided to use some of my ethnographic footage of the theatre lab. This was focused on a performance that aimed to show the interpretation of the oral path. The final video would be projected on a screen inside a corridor and also be supported by a representation of the LIS, within a room with works that illustrate the alphabet in LIS. In the following pictures, it is possible to see the creation in the laboratory by a right hand, closed fist, representing the letter A in the Sign Language alphabet (Figures 7.13 and 7.14). 123

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Figure 7.13  The artist is creating a hand for sign language sector of the art exhibition.

Figure 7.14  The letter ‘A’ in Italian Sign Language.

I think that Marco’s theatre play, ceramics and art exhibitions, as expression of his life path, must be read through ethnographic knowledge of the artist, and give a representation of the sensory and life skills developed and learned over time. The theatre performance, his comparison of abilities needed by bread and the clay, as well as the embodied drawing and visual representation of how he lives his life are all forms of expression and creation of knowledge of the self. The exhibitions designed and organised by Marco, on a superficial level, can be considered as communicative vehicles and representative of the complex visual narratives of his experience of D/deafness and compared to the tensions between oralists and signers or between LIS and CI. However, by virtue of the complexity of the ethnographic 124

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context outlined in this work and the constant dialogue between art and anthropology, as well as between the artist and the ethnographer, they are configured as paradigmatic lines for crossing the field of D/deafness and as actions transformative of himself and myself.

‘I show the life, I hereby express my life’: an ethnographic conclusion The field of deafness in central Italy is defined by the lines drawn by social actors who cross different contexts: the medical-clinical, the associative, the institutional, normative and bureaucratic, theatrical and artistic. As I stated earlier, there seems to be a clear separation between the biomedical and cultural understanding of Deafness but that in practice are more intertwined. Marco’s activism must be analysed on several fronts to show its innovative character; specifically, the social use of visual materials (Seppilli, 2008) that connects with an EHM as well as disability activism. Recent anthropological studies related to health practices have challenged the notion of ‘vision’, reintegrating it into a broader framework linked to practices and knowledge construction (Grasseni, 2009). Visual representations and the transmission of knowledge, is not something metaphorical or abstract, but an ‘actual process that characterises everyday life in different communities of practice’ (Grasseni, 2009, p. 8). In another way, social movements like EHMs link individual experiences of health to collective socio-political experiences that debunk those medical ideas (Brown et al., 2012, p. 16). To conclude, the use of images, photos, drawings and artistic works have a meaning that goes beyond that attributed to the artist. There is an objective and temporal detachment from the viewer towards the artistic materials and those produced during ethnographic research, so it is possible to convey new and different messages, in order to ‘produce effects capable of stimulating, in the perception of the image and emotional state’ (Seppilli, 2008, p. 217), which triggers a critical curiosity towards the observer. In this way Marco, and myself as applied anthropologist, enter into a symbiotic relationship of study, analysis, representation, production and transmission of knowledge through sensations, emotions, ethnographic data and narrations, to build ‘good communicative practices’ and make activism in the area of deafness something concrete, that can convey a knowledge of disability that goes beyond and problematises simple dichotomies.

Notes 1 Fieldwork notes: Conversation with Marco 24/01/2011. 2 Marco is a pseudonym. 3 Through an audiological classification, deafness can be defined with the grades of hearing impairment: slight/mild with an audiometric loss ranging between 26 and 40 decibels, moderate between 41 and 60 decibels, severe between 61 and 80 decibels, and of a profound degree with a hearing loss above 81 decibels. The last two are of particular importance from a social and medical point of view, since they influence the methods of acquiring oral language and, therefore, compromise verbal communication processes inscribed in the relation between sound and word. See the classification by World Health Organization (WHO). Retrieved from http://www.who.int/ deafness/hearing_impairment_grades/en/ on 30 November 2018. 4 In some cases, I chose to use the formula ‘D/deaf ’ because in the body of the text it refers to both categories: the cultural minority group who classify themselves as Deaf, part of the Deaf community, that uses sign language and deaf people with hearing impairment who do not recognise themselves in the above communities but, similarly, are constituted in associations or informal groups. 5 Fieldwork notes: 22/09/2010.

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Loce-Mandes 6 Fieldwork notes: 24/01/2011. 7 Unlike other sign languages, LIS is not recognized by the Italian state as a language, but as a ­m imic-gestural language. 8 Author’s own translation. 9 Author’s own translation. 10 Author Giorgio Regoli, ‘Impianto Cocleare’ (Cochlear Implant), February 2012. 11 Fieldwork notes: 14/11/2011. 12 Fieldwork notes: 8/11/2012. 13 Fieldwork notes: 8/02/2011. 14 The debate in applied visual anthropology (Pink 2009, 2011) has highlighted the important use of visual materials, in particular those produced through collaborations with social actors. The intent was to show the way in which ethnographic shots can be used as a tool for the representation of experience, without necessarily making an ethnographic documentary. As described by Chalfen and Rich (2007: 35), who have studied the use of images in clinical narration, the use of applied visual anthropology finds its basis in the representation of the image by prescribing a solution to a specific problem, to, ‘Improve communication and relationship between interacting communities, which sometimes have diverging, even opposing ideologies.’ 15 Fieldwork notes: 15/06/2014.

References Blume, S. (2010). The Artificial Ear: Cochlear Implants and the Culture of Deafness. New Brunswick, New Jersey & London: Rutgers University Press. Blume, S., & Hiddinga, A. (2010). Disability Studies as an academic field: reflections on its development. Medische Antropologie 22(2), 12. Brown, P., Morello-Frosch, R., Zavestoski, S., & Contested Illnesses Research Group (eds). (2012). Contested Illnesses: Citizens, Science, and Health Social Movements. Berkeley: University of California Press. Brown, P., & Zavestoski, S. (2004). Social movements in health: an introduction. Sociology of Health & Illness 26(6), 679–694. Cohen, H. U. (1989). Theatre by and for the Deaf. TDR (1988-) 33(1), 68–78. Durr, P. (1999). Deconstructing the forced assimilation of deaf people via De’VIA resistance and affirmation art. Visual Anthropology Review 15(2), 47–68. Fjord, L. (1999). “Voices offstage:” how vision has become a symbol to resist in an audiology lab in the U.S. Visual Anthropology Review 15(2), 121–138. Friedner, M. (2010). Biopower, biosociality, and community formation: how biopower is constitutive of the Deaf Community. Sign Language Studies 10(3), 12. Friedner, M. (2015). Valuing Deaf Worlds in Urban India. New Brunswick/New Jersey: Rutgers University Press. Gibb, R. (2001). Toward an anthropology of social movements. Journal des Anthropologues 85–86, 233–253. Ginsburg, F., & Rapp, R. (2013). Entangled ethnography: imagining a future for young adults with learning disabilities. Social Science & Medicine 99, 187–193. Grasseni, C. (2009). Skilled Visions: Between Apprenticeship and Standards. New York: Berghahn Books. Ladd, P. (2003). Understanding Deaf Culture: In Search of Deafhood. Great Britain: Cromwell Press. Lane, H. (1992). The Mask of Benevolence: Disabling the Deaf Community (2nd ed). San Diego, CA: DawnSignPress. Lane, H. (2005). Ethnicity, ethics, and the Deaf-World. Journal of Deaf Studies and Deaf Education 10(3), 291–310. Low, S. M. (2011). Claiming space for an engaged anthropology: spatial inequality and social exclusion. American Anthropologist 113(3), 389–407. Mirzoeff, N. (2011). The right to look. Critical Inquiry 37(3), 473–496. Nakamura, K. (2006). Deaf in Japan: Signing and the Politics of Identity. Ithaca, NY: Cornell University Press. Padden, C. (1996). From the cultural to the bicultural: the modern Deaf community. In I. Parasnis (ed). Cultural and Language Diversity and the Deaf Experience (pp. 79–98). Cambridge: New York, NY: Cambridge University Press.

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Art and D/deaf bodies in Italy Padden, C., & Humphries, T. (1988). Deaf in America: Voices from a Culture. Cambridge, MA and London: Harvard University Press. Padden, C., & Humphries, T. (2005). Inside Deaf Culture. Cambridge, MA: Harvard University Press. Palumbo, B. (2015). Movimenti sociali, politica ed eterocronia in una città siciliana. ANUAC 4(1), 8–41. Pizza, G. (2005). Antropologia Medica. Saperi, Pratiche e Politiche del Corpo. Roma: Carocci. Rattray, N. A. (2013). Contesting urban space and disability in highland Ecuador. City & Society 25(1), 25–46. Ravenda, A. F. (2018). Carbone. Inquinamento Industriale, Salute e Politica a Brindisi. Roma: Meltemi. Reid-Cunningham, A. R. (2009). Anthropological theories of disability. Journal of Human Behavior in the Social Environment 19(1), 99–111. Schertz, B. A., & Lane, H. (1999). Elements of a culture: visions by deaf artists. Visual Anthropology Review 15(2), 20–36. Seppilli, T. (2003). Antropologia medica at home: un quadro concettuale e l’esperienza italiana. AM Rivista Della Società Italiana di Antropologia Medica 15(16), 11–32. Seppilli, T. (2008). Scritti di Antropologia Culturale. I problemi teorici, gli incontri di culture, il mondo contadino. In M. Minelli & C. Papa (eds) Scritti di Antropologia Culturale. I problemi teorici, gli incontri di culture, il mondo contadino vol. I. Firenze: Leo. Olschki Editore. Shuttleworth, R. P., & Kasnitz, D. (2004). Stigma, community, ethnography: Joan Ablon’s contribution to the anthropology of impairment-disability. Medical Anthropology Quarterly 18(2), 139–161. Silver, A. (1999). My experience as an artist–vis-à-vis Deaf Art. Visual Anthropology Review, 15(2), 37–46.

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8 RESISTING THE WORK CURE Mental health, welfare reform and the movement against psychocompulsion Denise McKenna, Paula Peters and Rich Moth

Introduction ‘Welfare-to-work’ has become a central focus of the neoliberal onslaught on the welfare state in the United Kingdom (UK). The UK government has created a hostile environment for benefit claimants through cuts to entitlements, demonisation of recipients and coercive measures to engender ‘labour market activation’. However, these ‘reforms’ have also resulted in the emergence of new networks and alliances of resistance. At the forefront have been mental health survivors, who have been compelled by this draconian turn in welfare policy to extend the focus of the survivor movement activism from abuses in the psychiatric system to those perpetrated in the name of ‘work cure’ and ‘psychocompulsion’ (Friedli & Stearn, 2015; 2016). Allies from the mental health professions have also played a significant role because of serious concerns about the ethical implications for practice of this policy agenda. The chapter offers an account of this nascent social movement. It begins with the authors’ narratives describing their journeys into activism around these issues. This is followed by an overview of recent welfare reforms and shifts in mental health policy and practice against which activists are organising. It then describes activists’ collective responses and interventions, noting developing alliances and strategies of resistance. The chapter concludes by briefly examining emerging debates and policy issues for the movement.

Biographical journeys into activism We begin with our personal stories. These give some relevant context and background to help explain the lived experiences and processes that compelled us to become involved in the movement against psychocompulsion.

Paula Peters (Disabled People Against Cuts & Mental Health Resistance Network) I come from a family with a long history of trade union activism and community activism. I began campaigning as a disabled child aged 8 to save the hydrotherapy pool at my local 128

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hospital, where I’d had a year’s intensive treatment, from closure. I wanted to give back to a place that had helped me to walk, balance and learn to swim! When the Coalition government came into power in 2010 a tranche of social security and community services cuts were heading our way. However, it was later that year, on the 16th December, that the reality of the cuts came my way in the form of a tragic event that has a lasting effect on me to this day. My friend C who had a diagnosis of Bipolar Disorder, something the two of us shared and bonded over, was found fit to work after a Work Capability Assessment (WCA) medical test for the Employment and Support Allowance (ESA) benefit. When the brown envelope from the Department for Work and Pensions (DWP) came it pushed her over the edge and she took her own life at our local train station. The death of my friend and my fear about when I too would have to go through the horror of the WCA played a huge part in my own admission to my local psychiatric in-patient unit. I was hospitalised for three months, living with the voice of then Work and Pensions Secretary Iain Duncan Smith (see Chapter 1 in this volume) in my head, seeing an image of his face in front of me daily. When I came out of hospital in April 2011, I wanted to learn as much as possible about the WCA to be armed with information to help myself and others too. I learnt a lot online and from other claimants who had gone through the process. When, after some misgivings, I joined social media in 2012, I came across a Facebook group called Disabled People Against Cuts (DPAC). I contacted them and got involved, a decision that would change my life as I would meet many people who were to become not just my activism family but good friends. My first involvement in direct action through DPAC was to support the ‘transport for all’ campaign to highlight London’s inaccessible bus services. This involved disabled people bringing placards on to buses then chaining themselves to the vehicles! DPAC also held a week of action at the London 2012 Paralympic Games due to its sponsorship by the multinational corporation Atos, a WCA contractor. One protest involved taking a black coffin to Atos’ Head Office to highlight the WCA’s tragic human cost. I was given the job of releasing black balloons into the air. This was a moving protest but also a draining one. Later that week, we organised a stunt to coincide with the Paralympics closing ceremony. We put an Atos ‘miracles’ tent outside the company’s offices with disabled people acting as if they’d been cured from their conditions, whilst a group of DPAC activists occupied nearby DWP offices. When I arrived at the occupation, a barrage of police was trying to remove disabled people from the building, with photographers taking pictures and television cameras everywhere. I have to admit these actions could be nerve-wracking and scary but it was interesting to witness direct action in person. Through DPAC, I heard about Mental Health Resistance Network (MHRN) who were taking the DWP to court over the impact of the WCA on mental health claimants. Having lost friends to the WCA and just received my own dreaded brown envelope, this court case was personal to me. I met Denise McKenna from MHRN on a windy sunny afternoon in 2012 outside the Royal Courts of Justice, and volunteered to support and help the campaign in any way I could. Little did I know then that a friendship would be forged that exists to this day. I became the link campaigner between DPAC and MHRN as I worked on that case for over two years. I learnt a lot from these experienced campaigners: how to speak in public, make banners, how a direct action worked, how to plan one and how a group of people worked together. I began to take photos of protests that I was involved in, recording a social history of activism, bonding with many activists along the way. We laughed, cried, talked, ate and spent time together after each protest. We became friends, brothers and sisters in solidarity. To me that is what activism is about, the bonds you form in campaigns, on 129

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actions and at events, memories you build in the fight for equality, inclusion, human rights and social justice. If you ask many campaigners why they got involved in protests, the answers are similar – a hatred of social injustice and a wish to do something about it. In reality, the driving force for many of us now is the battle for the right to live, for the right to exist, as we are seeing the horrific erosion of the welfare state, National Health Service (NHS) and local government.

Denise McKenna (Mental Health Resistance Network) I am writing from the perspective of a survivor and a benefit claimant. I first became involved in the survivor movement in the early 1990s after a few unhelpful admissions to psychiatric wards. The survivor movement opposes the medical model of mental distress and has been campaigning for decades for care to be provided from a social perspective. We have also been fighting the power imbalance between provider and service user enshrined in the Mental Health Act. This was compounded by the fact that I am working class and many psychiatrists and psychologists are middle class. I was a member of the hospital user group and had become an expert in the minutiae of ­inpatient life. In 2004, I went to a Labour Party meeting with a fellow survivor to ask the councillors to visit the acute psychiatric units in their constituencies to see how bad they were. One councillor was sympathetic so we arranged to meet her in the hospital user room and show her around. When she arrived, she wasn’t alone; she was with a senior hospital manager. The councillor’s attitude towards us had also changed as she no longer wanted to see the wards. She was hostile and told us we should be out working instead of, I quote, ‘Sitting around smoking and drinking coffee all day.’ As it is, I have never smoked and don’t drink much coffee, although it’s commonplace for survivors to be accused of excessive smoking and caffeine consumption. There is some truth in that accusation; I think it’s called self-­ medication. Anyway, from her behaviour I knew that something significant had changed. Soon we were being bombarded with back to work propaganda from the New Labour government. I had worked in the past but in recent years had been a revolving door psychiatric patient. No one at the hospital was suggesting that I return to work; on the contrary, they were busy sectioning me and giving me drugs and electroconvulsive therapy (ECT). I knew that I was now in a predicament, unable to work and uncertain that my benefits would continue. I wasn’t the only one in this predicament. In the ‘mad’ community1 people come and go; some leave the system and move on, some kill themselves and others stay for a long time. There was soon widespread panic about the back to work sword of Damocles hanging over our heads. The survivor movement had been looking inwards, preoccupied with psychiatry, but we were suddenly confronted with the outside world – it seemed at the time that the fight against organised psychiatry had to be put on the back burner. Soon, the user group was closed down and user involvement was controlled by managers at the hospital which was now a Foundation Trust.2 Over time, day centres closed while the press were going crazy demonising us for being ‘scroungers’ and ‘liars’ (see Chapter 1) and we were still being pumped full of powerful drugs. Loads of people were discharged from secondary care and left without support. People were isolated and in 2008 many started losing their benefits. In 2010 the Conservative/Liberal Democrat Coalition government came into power and we knew things were set to get much worse. That December a couple of us called a meeting with other survivors and we formed the Mental Health Resistance Network. At first, we were just campaigning to have the WCA assessment for the Employment and Support Allowance (ESA) benefit scrapped. Eventually we linked up with campaigners with physical 130

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disabilities; however, we felt like phoneys. Many of us didn’t identify as disabled and we had slightly different issues with developing our own social model. Nonetheless, that was one good thing to come out of all this: we were finally out of the isolation of the psychiatric system, at least as campaigners. I mention this history because I want to emphasise the enormity of the shift we have already made in campaigning. We are now out in the world standing side by side with other oppressed people. I am not an academic or a political expert. I am just one of the people that the neoliberals have little need for other than as part of a reserve workforce to be used to drive down wages and working conditions, and as a possible example of what can happen to you if you don’t submit to the demands of their preferred society. I am fighting for my life and for the lives of my friends. I am also fighting for what it means to be human and to be civilised, for how we value ourselves and each other. I am fighting against the lie that the only value to be found in our lives is as workers making the rich even richer. We have a higher purpose than that.

Rich Moth (Social Work Action Network) My contribution is from the perspective of someone who used to be a social worker in mental health services, and is now involved in social work education. I have been involved in various forms of trade union and socialist activism since the 1990s, and am an active member of the Social Work Action Network (SWAN) since its formation over a decade ago. SWAN is a grassroots alliance of social work practitioners, educators, students and service users campaigning against the increasing dominance of marketisation and a managerialist target culture in social work. I became involved in SWAN because I share its rejection of current restrictive and punitive trends in social work provision. I believe in the need to fight for a more democratic and socially just welfare state that places expertise by lived experience at the centre of decision-making. This enables ethical professionalism in the provision of support. As a SWAN activist, I became involved in struggles against austerity cuts to mental health and other support services in London, where I lived and worked at the time, as we witnessed the devastating impact of this agenda on social care and other public services after the election of the Coalition government in 2010. I self-define as an ally of disabled people and mental health survivors, and attended the first DPAC national conference in 2011 to offer SWAN’s solidarity and to help build activist links between our two networks. I also invited DPAC activists to speak about the impact of austerity cuts and emerging resistance at SWAN’s national conference in Birmingham in the same year. After moving to Liverpool, I joined with mental health service users/survivors, anti-­ austerity activists and local trade unionists to challenge the planned closures of two mental health day centres in the city. This campaign was eventually successful in preventing the local council from either closing or outsourcing these services (Moth et al., 2015). However, at this time, many of the survivors with whom I had been campaigning were beginning to face pressure not only from service cuts but also from welfare reform. On hearing so many stories of trauma, distress and ‘fear of the brown envelope’ (Garthwaite, 2014) from the DWP, it seemed urgent to turn our local campaigning towards challenging benefit cuts and reforms. A small group of us from SWAN and the day centre campaign attended an activist conference in Bermondsey in 2016 organised by MHRN and the Alliance for Counselling and Psychotherapy at which we met Denise, Paula and other activists against welfare ‘reform’ and psychocompulsion. Since then, I have continued to work to develop campaigning links between our various activist networks to raise the profile of the harmful impacts of welfare reform for people experiencing mental distress and build resistance to this policy agenda. 131

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Having recounted our personal trajectories into activism, we now turn to more detailed description of the intersecting policy agendas that we are campaigning against. This overview is in two parts: in the first we describe the main components of welfare-to-work policy; in the second we describe ongoing reforms to mental health policy and practice.

The welfare-to-work policy agenda In recent years the universalist and rights-based approach of the post-war social security settlement has been eclipsed by a more targeted and conditional neoliberal approach to welfare with a stronger focus on claimants moving into employment (Grover, 2006). This policy agenda has two overlapping elements: welfare reform and active labour market policies (ALMPs).

Welfare reform The welfare reform programme has two main components: increased conditionality and reductions in eligibility for and levels of social security support (Patrick, 2017). Escalating conditionality emerged in the early 2000s during the New Labour era and further intensified under the Conservative-led Coalition government with, for instance, conditions extended to in-work benefit recipients; a situation characterized as ‘ubiquitous conditionality’ (Dwyer & Wright, 2014). A prominent form of welfare conditionality involves ‘behavioural conduct’ conditions, for instance requirements to engage in activities such as job searching, mandatory courses or workfare (Dwyer & Wright, 2014). However, ‘psychological conditionality’ has also become an increasingly integral feature of welfare-to-work regimes (Watts & Fitzpatrick, 2018). This goes beyond conduct requirements by demanding claimants modify their attitudes, dispositions or personality in order to return to or find work. This is underpinned by the notion of ­unemployment as a product of individual-psychological deficits (Friedli & Stearn, 2015). The escalation of various types of conditionality has been combined with sanctions for non-­ compliance, representing an increasingly ‘punitive turn’ in UK welfare provision which has embedded and exacerbated social divisions and undermined social cohesion (Taylor-Gooby, 2016). The other main trend in welfare reform has been to limit access to and levels of welfare support. Examples include the 2010 Coalition government’s below inflation uprating of benefits, fol­ othergill, lowed by a benefit rates freeze under the 2015 Conservative administration (Beatty & F 2016). Another is the restriction of access to cash benefits by redrawing eligibility boundaries, for instance the Coalition government’s prediction in 2013 of an eventual one-­quarter reduction in those eligible to access the disability benefit Personal Independence Payment (PIP) when it replaced Disability Living Allowance (DLA) (Roulstone, 2015; Kennedy, 2017). In this chapter, we refer mainly to two social protection (welfare benefit) measures. These are the Employment and Support Allowance (ESA), an out-of-work benefit introduced in 2008 for people experiencing illness or incapacity, assessed via the WCA test, which is the main income replacement benefit for disabled claimants or those with ill-health. The other is Personal Independence Payment (PIP), a non-means-tested extra-costs benefit for people with a long-term physical or mental health conditions or impairments that was introduced from 2013 to replace Disability Living Allowance (DLA) for claimants aged 16–64.

Active labour market policies The other core dimension of the UK government’s activation strategy is called the active labour market policies (ALMPs). The purpose of this policy agenda is to integrate unemployed welfare 132

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recipients into the labour market. One of the most prominent ALMPs in the UK was the Work Programme (WP), which since late 2017 has been replaced by a much-scaled down successor, the Work and Health Programme (WHP) (Powell, 2018). These programmes involve a range of employment services targeted at specific groups of welfare claimants, including people with mental health needs, in receipt of either Jobseeker’s Allowance (JSA) or Employment and Support Allowance (ESA). Within this, a central stated aim has been to reduce the disability ­employment gap (DEG) (Work and Pensions Committee, 2017). However, even on this measure, the WP was deemed to have performed poorly (Work and Pensions Committee, 2015). Moreover, while the scheme has failed to effectively support disabled people, its role in offering lucrative market opportunities to private sector welfare-to-work providers has come under scrutiny (Wright, 2016). Important elements of WP (and now WHP) provision have been secured via competitive procurement with an anticipated total value of up to £5billion. As outlined in Chapter 1, services were contracted out to prime providers, including forprofit transnational corporations such as G4S, Maximus and Ingeus, who were given scope for further sub-contracting under a payment by results system based on employment outcomes achieved by claimants (Maddock, 2012). Private sector involvement is also prominent in the delivery of welfare benefit services with assessment of disabled claimants or those with ill health also contracted out to transnational for-profit providers: Maximus in the case of ESA (the Work Capability Assessment), and Capita and Atos Healthcare (the latter renamed Independent Assessment Services) for PIP. Atos Healthcare was also formerly contracted to deliver the WCA but due in significant part to protests and resistance by disabled people withdrew from this arrangement early in 2014 (Warren et al., 2014). Furthermore, the UK’s government’s claim that its welfare reform programme was providing valued assistance to claimants, including disabled people, was strongly challenged by the United Nations (UN) Committee on the Rights of Persons with Disabilities (CRPD) in 2016. In a report that was unprecedented in the extent of its criticisms, the UN found that UK welfare reforms had resulted in, ‘grave or systematic violations of the rights of persons with disabilities’ (United Nations, 2016, p. 20). This was a result of the adverse and disproportionate effects on disabled people of reduced welfare support, a discriminatory lack of accommodation of particular needs in assessment procedures, and minimal evidence of improved employment outcomes. Whilst the punitive direction of UK welfare policy under recent governments has had detrimental impacts on claimants with a variety of needs and protected characteristics, its effects have been particularly harmful for people experiencing mental distress who make up a significant and growing proportion of disability benefit claimants – currently around 40% (Viola & Moncrieff, 2016). There is growing evidence of significant harms to such claimants through the unjust denial of financial support (Shefer et al., 2016), the ‘benefits distress’ generated by assessment processes (Moth & Lavalette, 2017), and an association between WCA procedures and increased levels of suicide, self-reported mental distress and anti-depressant prescribing (Barr et al., 2016). Disproportionate rates of sanctioning imposed on ESA claimants with mental health needs has also been highlighted (Cameron, 2014) alongside the modification of PIP eligibility criteria to exclude claimants with certain types of mental distress from the enhanced components of this benefit, a proposal later found to be discriminatory by the High Court (Machin, 2018).

Integrating welfare and mental health policy At the same time that a more punitive approach to welfare benefits for people with mental distress is being escalated, mental health service support is being reduced. While the Coalition 133

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government (2010–2015) claimed to ring-fence the NHS budget (HM Government, 2010), evidence suggests considerable mental health service cuts as part of wider ­austerity-related public spending reductions since 2010 (Gilburt, 2015). As well as cutting mental health services, there has been a reconfiguration of remaining provision to align practices and priorities with those of the welfare to work agenda (Moth  & McKeown, 2016). Two significant examples of this are the Improving Access to ­Psychological Therapies (IAPT) programme and the recovery approach. The IAPT programme, ­located within primary rather than secondary care, has seen increasing investment, with plans to further expand provision in order to increase patient numbers by 50% to 1.5m per annum between 2016 and 2021 (NHS England, 2016). However, in this time-limited counselling approach, a key outcome measure is the reduction of sickness absence and promotion of return to work for its users, an emphasis that has been criticised for its alignment with ALMP rather than therapeutic goals (Walker, 2015; Friedli & Stearn, 2015). Similarly, in secondary care mental health services, the recovery approach is being promoted through new short-term services such as Recovery Colleges to de-­emphasise the provision of longer-term therapeutically-oriented mental health services, and inculcate tendencies to reduced consumption of services by users (O’Donnell & Shaw, 2016; Harper & Speed, 2012). Such policy convergence looks likely to be an increasingly central feature of mental health policy development. A core principle underpinning this is the notion of ‘employment as a health outcome’. This concept is threaded through recent mental health policy initiatives including the Mental Health Taskforce (2016) and is organisationally embodied in the Joint Work and Health Unit ( JWHU), an institutional collaboration between the Department for Work and Pensions and Department of Health which seeks to increase alignment between their respective policy agendas in order to promote the welfare to work agenda across government (Department for Work and Pensions and HM Treasury, 2015). The JWHU led on the Improving Lives: Work, Health & Disability Green Paper published in October 2016 that has controversially proposed extending a requirement to engage in work preparation tasks to a much wider group of claimants with mental health needs (Grover, 2017). These policy convergence trends are having significant detrimental impacts on the mental health of claimants and survivors (Friedli & Stearn, 2015; Moth & Lavalette, 2017). However, they have also prompted activist responses and resistance that we will illustrate next.

Resistance to psychocompulsion and work cure We described above how the period since the election of the Coalition government and its successors has seen an escalation of cuts, restrictions and punitive restructuring of welfare provision for people with mental distress. Yet, during this time an informal network of social movement organisations and activists has also formed to challenge and resist this agenda. In this section we introduce critical concepts developed within the movement, provide an overview of the strategic orientation of political action and highlight the alliances of resistance emerging to confront this policy agenda.

Subversive concepts In countering neoliberal welfare-to-work agendas, activists have developed a new set of ‘subversive’ concepts (Hart et al., 2019) to describe and critique these policy phenomena. In this section we introduce two of these: psychocompulsion and work cure. 134

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Wider policy shifts under neoliberalism have foregrounded notions of personal responsibility. One consequence of this has been amplification of the role of individual psychology within public policy (Cromby & Willis, 2013). Recent UK governments have increasingly drawn on psychology and behavioural economics to inform policy development, most notably via the (now-privatised) Behavioural Insights Team or ‘nudge unit’. The implications of this within the welfare and employment policy arena have been the emergence of what critics have dubbed ‘psychocompulsion’ (Friedli & Stearn, 2015). This concept has two mutually interacting dimensions. The first is the promotion of psychological explanations for unemployment, i.e. framing out-of-work status as a product of individual maladjustment rather than structural factors such as the economy. The second refers to policy prescriptions seeking to address this condition via coercive conditionality. This involves the imposition of mandatory activities and interventions on benefit claimants, underpinned by the threat of sanctions, with the aim of changing their beliefs, attitudes and dispositions in order to enhance ‘job-readiness’ and ‘employability’. This neoliberal construction of unemployment as a form of psychological disorder finds a proposed remedy in employment, the so-called ‘work cure’ (Friedli & Stearn, 2016). This concept of ‘employment as a health outcome’ now forms a central plank of mental health policy (Mental Health Taskforce, 2016). However, this fails to acknowledge the role of the nature, quality and conditions of work in determining its impact on health and wellbeing (Friedli & Stearn, 2016). These and other subversive forms of knowledge have both contributed to the emergence of, and themselves been inspired by, grassroots activism to challenge these policy agendas so we will now offer an overview of the forms and strategies of resistance developed within this incipient arena of activism.

Strategies of resistance Activists from the movement against psychocompulsion have organised and engaged in a variety of forms of political action including activism in the legal sphere, direct action protests, public meetings, occupations and lobbying of companies, public institutions and political parties for changes in policy and practice. In this section we provide an overview of these diverse manifestations of contentious politics highlighting four strategic arenas of activism. These are: (i) resisting policymakers and policy implementation; (ii) strengthening grassroots networks through alliance building and mutual support; (iii) challenging collusion by service providers; and (iv) engagement with electoral parties. While we acknowledge this is a necessarily brief and selective account of campaigning interventions thus far, this has been written from an engaged perspective with at least one or more of the co-authors involved as organisers and/or participants in all of the activities outlined below.

(i) Resisting policymakers and policy implementation In this first section we focus on resistance oriented towards the UK government and its constituent agencies for implementing welfare policy. We highlight two significant examples. The first is social lawfare activism to challenge discrimination against people with mental health needs in the benefits system. The second is direct action against plans to implement the psychocompulsion agenda through co-location of benefits, employment and mental health services. One of the first prominent examples of resistance to implementation of the UK government’s draconian welfare ‘reform’ agenda was a ‘social lawfare’ strategy initiated by survivor and claimant-led group Mental Health Resistance Network (MHRN) in 2011. Lawfare refers to 135

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the use of legal means to engage in political struggle (Comaroff & Comaroff, 2009). The case involved a legal challenge to the Work Capability Assessment (WCA) ‘medical’ test for ESA which, MHRN argued, was designed to invalidate claims by discriminating against claimants with mental health needs. A key concern identified was that evidence from mental health professionals and GPs providing support to such claimants was disregarded by the DWP when assessing for disability benefits. The DWP’s position was that the WCA was a ‘functional’ test and therefore such evidence was irrelevant as, according to its favoured biopsychosocial model of disability (Shakespeare et al., 2017), functioning cannot be determined by diagnosis alone. Instead the WCA relied predominantly on claimants’ description of their condition but for myriad reasons, mental health claimants often have difficulty self-reporting on their ‘functioning’. MHRN and three mental health charities were granted a judicial review of the WCA based on the cases of two claimants experiencing mental distress. Using the Equalities Act 2010, it was argued in court that the DWP should make a ‘reasonable adjustment’ to the WCA by accepting its responsibility for obtaining further medical evidence for all claimants. MHRN’s challenge was vindicated when, after a case lasting three years, the Upper Tribunal ruled in late 2013 that the WCA put people with mental health conditions at a ‘substantial disadvantage’ (Public Law Project, 2013). In spite of this ruling, the DWP was not legally compelled to make changes to the WCA process, merely encouraged to trial possible changes. Nonetheless, MHRN and other campaigners believe this pressure led to increased numbers of claimants with mental health problems being placed into the ESA Support Group where there is less pressure to engage in ‘work-focused activity’.3 This activism within the legal sphere during the early stages of welfare reform was later followed by a turn towards direct action. This was prompted by the announcement, in 2015, of measures to co-locate IAPT therapists in 350 Jobcentres, the next major step in psychocompulsion policy implementation (HM Treasury, 2015). The plans involved integrating cognitive behavioural therapy (CBT) and employment services for people with mental health problems on 10 pilot sites around the UK. This caused significant concern amongst claimants because it was unclear whether declining therapy would be treated as failure to make oneself work ready, resulting in benefit sanctions. MHRN argued this would amount to an extension of the coercive powers of the 1983 Mental Health Act with psychologists pressured to act as state enforcers and claimants potentially subject to sanctions for refusing therapy. As well as concerns articulated by survivors, many mental health workers considered this potentially coercive dimension ethically troubling. Ultimately, this acted as a spur to increased campaigning links between survivors and mental health workers (Atkinson, 2017). The first joint action took place in June 2015 at one of the pilot sites in Streatham, London. An official party had been planned to celebrate the co-location of the Lambeth Living Well Hub for Community Mental Health Services and the Jobcentre (benefits and employment) service. This was met with a public demonstration that brought together mental health survivor activists, psychologists, therapists and other allies. During the protest some members of MHRN entered the building on the premise of joining the party. Once inside, activists briefly occupied the third floor of the building, letting off a siren and unfurling a large banner from a window that read ‘back to work therapy is no therapy at all’.4

(ii) Strengthening grassroots networks through alliance building & mutual support One distinctive aspect of the emerging movement against psychocompulsion is its composition as an alliance of survivors, disabled people and mental health workers. In this section 136

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we will highlight the role of activist conferences in fostering these relationships and thereby strengthening this nascent cross-sectional coalition. As the campaign to challenge psychocompulsion gained momentum after the Streatham protest, survivors from MHRN and members of the therapists’ activist group the Alliance for Counselling and Psychotherapy (ACP) began work on a jointly organised conference. Eventually held on 5th March 2016 in Bermondsey, London, the event was entitled ‘Welfare Reforms and Mental Health: Resisting Sanctions, Assessments and Psychological Coercion’ and brought together around a hundred participants. The composition of delegates reflected the emerging movement, with broadly equal numbers of survivors and disabled people, mental health workers (including psychologists, therapists, mental health nurses and social workers), academics and other activists. The event had a lively and dynamic feel with a strong participatory ethos, reflecting sensitivity to the need to acknowledge and mitigate power differentials between survivors and mental health workers (McKeown et al., 2014). The conference workshops explored salient issues and potential focal points activism. Topics included: psychological coercion in welfare; critiques of the recovery model; campaigning priorities; emotional support for survivors and activists; organising alliances and networks; building direct action; as well as challenging the collusion of professional bodies and mental health charities with the DWP (Atkinson, 2016). Later that year activists from the north of England who had been inspired by the Bermondsey conference went on to organise the ‘Mental Health and Welfare Reform: Resisting cuts and sanctions, building alliances’ conference in Liverpool.5 This event too brought together welfare claimants, mental health service users/survivors, disabled people, and mental health and welfare workers and was attended by over a hundred people. One of its distinctive features was the involvement and support of local trade unions, thereby seeking to extend the support base of the movement into labour activist networks. The relevance of unions in the struggle against welfare reform and ‘work cure’ was explored in one of the workshops foregrounding the notion of mental distress as the industrial injury of the twenty-first century due to contemporary working conditions (Slorach, 2016; Moth & McKeown, 2016). One outcome of these conferences and jointly organised actions was to consolidate relationships between the diverse campaigning networks and thereby strengthen this informal cross-sectional alliance (Sedgwick, 2015). Though it has not coalesced into a formal umbrella grouping, this alliance includes survivor and disabled people’s networks (MHRN; DPAC; Recovery in the Bin), mental health worker campaigns (ACP; Psychotherapists and Counsellors for Social Responsibility; Psychologists for Social Change, formerly Psychologists Against Austerity; Free Psychotherapy Network; Psychotherapists and Counsellors Union; Critical Mental Health Nurses’ Network; SWAN), claimant activist networks (Boycott Workfare; Network National Unemployed Workers Combine; Scottish Unemployed Workers’ Network) and trade unions (Merseyside TUC). These links illustrate shared interests between groups of survivors faced with the harsh realities of draconian welfare policies and grassroots campaigning networks of mental health practitioners who have expressed concern about the harmful implications of coercive ‘work therapy’ initiatives and the pressure on workers in the welfare state. By integrating diverse perspectives, demands and interests from across these networks this cross-sectional approach has the potential to strengthen the reach and effectiveness of campaigning activity. Alongside the emphasis on collective forms of political action it is important to note that austerity cuts to support services, and in particular reduced access to welfare rights advocacy, has led to an increasing demand for the provision of mutual support in the work of many survivor activist groups such as MHRN and grassroots practitioner networks. This involves 137

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a range of informal activities from emotional support in person and on social media to other activists and people distressed by the benefits procedures to organising supporters to accompany claimants to welfare assessments. This extends to more formal interventions such as mutual self-care groups and free therapeutic support to claimants (Free Psychotherapy Network, no date).

(iii) Challenging collusion by service providers The two conferences, as we have noted, offered spaces for activists to debate emerging issues and focal points for campaigning. One set of issues that was prominent in discussions at both events was collusion with the DWP by mental health charities and therapists’ professional associations. One of the first organisations to be challenged in this way was the New Savoy Partnership (NSP), an umbrella organisation including various professional and accrediting associations for therapists and mental health charities. NSP was formed in 2007 in the wake of Lord Layard’s proposals for the large-scale roll out of the IAPT cognitive behavioural therapies programme (Layard & CEPMHPG, 2006) with the aim of promoting NSP’s constituent organisations as they sought lucrative IAPT contracts from government. The first protest, at NSP conference 2016, highlighted the failure of the associations and charities involved in NSP to address ethical and practical concerns about proposals such as IAPT workers in Job Centres (Duffin, 2015; Atkinson, 2016). Protestors donned US-style prison chain-gang outfits to symbolise the enforced nature of this workfare agenda. As a result, activists were invited inside to address their concerns directly to conference delegates. Further protests also took place at the 2017 and 2018 NSP conferences, with activists producing a grassroots zine, ‘Oi Oi Saveloy’, which was handed out to conference attendees in 2017. Following the 2016 NSP protest, activist attention turned to the embedding of job coaches in GP surgeries. Six sites in Islington, north London, were piloting this scheme for one year. These developments reflected the agenda set out in the latest mental health policy agenda for England that foregrounds the notion of ‘employment as a health outcome’ and the role of the NHS in supporting people to find or keep employment (Mental Health Taskforce, 2016). Activists pointed out that significant cuts to secondary mental health services meant many people with severe mental health conditions were being discharged into the care of their GP, and consequently there would be nowhere in health services free of pressures to work. Furthermore, with the job coaches provided by Remploy, an arm of the trans-national corporation Maximus contracted to deliver the WCA, it was feared that this pilot extended the reach of welfare conditionality into GP services. Activists chose the largest of the three surgeries to protest and, in March 2016, members of MHRN, DPAC and other groups gathered and placed a large sign combining Jobcentre Plus and NHS logos outside the surgery. Activists had also created props such as mock NHS green scripts to satirise ‘jobs on prescription’. The protest then marched from the surgery to the nearby Old Street roundabout where protestors engaged in direct action to ‘occupy’ the road and block traffic which temporarily brought this major junction to a standstill (Gayle, 2016). After NSP and GP-based job coaches, the next focus for campaigners was high profile mental health charity Mind. MHRN had expressed concern for some time that Mind had been slow to speak out against the injustices of the WCA after its introduction, even though Paul Farmer, CEO of Mind, was a member of the government’s WCA scrutiny panel. Although Mind eventually supported the judicial review of WCA, and Farmer consequently resigned from the panel, MHRN activists were sceptical believing that Mind support was 138

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mainly motivated by public relations rather than the needs of service users. Mind’s reluctance after the review to pressure the DWP to reform the WCA reinforced this perception, as did the increasing focus of local Mind services on getting people into work rather than improving quality of life. Campaigners concerns were vindicated in October 2016 when it became apparent that a Mind senior manager had been seconded to the DWP for a year, and an anonymous whistleblower disclosed that Mind had joined a scheme to enable it to bid for government Individual Placement Support Scheme (IPS) contracts to push people with severe and enduring mental health problems in the ESA Support Group into work. MHRN immediately protested outside Mind’s head office in London. When Paul Farmer came out to speak to protestors, he was presented with 30 pieces of silver (of the chocolate variety) to symbolise Mind’s prioritisation of government interests and contracts over user needs (Pring, 2016). A fourth focus of activism has been the role of psychology in the government’s welfare reform programme, in particular the engagement of the British Psychological Society (BPS) in joint work with the DWP. Consequently, concerned clinical psychologists, survivors and other allies organised a lobby of the 2017 BPS Division of Clinical Psychology Conference in Liverpool. The protest called on the BPS to withdraw from this joint work and support demands for an end to harmful welfare reforms. As a result of the lobby, welfare reform became a major talking point for conference attendees and four campaigners representing this cross-sectional alliance (a survivor, a carer, a psychologist and social work activist) were subsequently invited to address their concerns and demands to the conference.

(iv) Engagement with electoral parties The fourth strategic arena of activism we identify is engagement with the Labour Party following its leftward reorientation since the 2015 election of Jeremy Corbyn as leader. The new party leadership signalled a more progressive stance on welfare policy and activists have sought opportunities to present evidence of the problems and failures of current welfare-towork policies. A number of interventions have been organised to realise these aims. Activists organised a fringe meeting at Labour Party Conference 2017 with speakers from MHRN and the Alliance for Counselling and Psychotherapy (ACP) representing the movement with support from DPAC, SWAN and others. Labour Party activists within the movement also composed and sent motions critical of psychocompulsion to the Labour Party Conference 2017. Another focus has been lobbying of Labour Shadow Cabinet members to exert pressure and make the case for policy reviews in this area. Activists met with Shadow Chancellor John McDonnell and the shadow welfare team in late 2018 to discuss reform of welfare policy (Pring, 2018b).

Future directions Having outlined these broad arenas of struggle and strategies of resistance utilised by the movement, we now briefly consider future directions. First, activists in the movement have challenged the dominant neoliberal conception of a work as the primary and sole valued social activity that is at the centre of current policy dogma. As well as activism to improve the conditions of welfare and work, debates have considered alternatives to the work-centred society (Frayne, 2015). To take this agenda forward some within the alliance have suggested universal basic income (UBI) could play a progressive role, however we agree with critics 139

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of UBI who have highlighted how in a neoliberal context this mechanism is more likely to promote right-wing libertarian than left redistributive goals (Clarke, 2018). Second, it is important to highlight three emerging policy agendas. We noted above the launch in late 2017 of the successor to the WP: the Work and Health Programme (WHP). The devolution of WHP to the local level offers possible opportunities for localised opposition. Another is the recently announced plan to embed 300 work coaches in NHS mental health services (NHS England, 2018). This significantly reconceives the role of such services, bringing ‘work cure’ pressures to service users at the heart of NHS provision. Finally the rollout of a new benefit, Universal Credit, extends mandatory work requirements and sanctions for claimants with mental distress. These are all pressing matters for resistance.

Conclusion In the UK, in the twenty-first century the struggle of survivors and their allies has broadened beyond oppression in the mental health system to coercion into poorly paid work. Under neoliberalism, poverty and ‘worklessness’ are increasingly seen as a choice made by the individual and, moreover, one that harms society. As a result, individual claimants are viewed as morally culpable or ‘defective’, harking back to the stigmatising policy and language of the late 19th and early twentieth century. The supposed solution offered by neoliberal policymakers is social inclusion through work. However, the reality is that many of the anchors of a decent society characterised by comprehensive social and welfare support have been taken away under neoliberal austerity leaving dead end, poorly paid and insecure jobs as our only connection to society. But rather than employment being the solution it can often be the problem. To work when we are not able to cope with work, knowing that it is not in our interests to do so, and to be forced to feign enthusiasm for our own exploitation is a kind of death of the soul. In this context, experiences of mental distress are getting worse. The best solution for the current rise in mental distress is to change this society and culture, replacing the narrative of individual to one of societal responsibility. The latter recognises the importance of social interconnectedness and the consequent necessity of comprehensive, mutual and democratic forms of welfare. The nascent alliances of resistance to psychocompulsion and work cure that we have described offer a microcosm of these potentials for interconnectedness through which alternatives to neoliberal conceptions of welfare and society might be conceived and realised.

Notes 1 The term ‘mad’ refers to networks of people who self-define as survivors of mental distress and/or psychiatric care. The movement sees its forerunners stretching back as far as the thirteenth century (Survivors History Group, no date), however the current community and movement emerged in the 1970s and it draws on various legacies. One is the work of Judi Chamberlin on survivor-­ controlled forms of support (Chamberlin, 1978) and another is ‘Mad Pride’, a social movement led by those self-identifying as mad seeking to reclaim the liberatory dimensions of madness whilst campaigning for the civil rights of those experiencing mental distress. The mad community works alongside allies seeking transformation of the mental health system and of the wider social inequalities producing mental distress (Curtis et al., 2000). 2 This reform involved making NHS providers into more financially independent business units as part of wider marketisation processes. 3 Shakespeare et al. (2017) demonstrate how the UK government’s biopsychosocial model counterposes so-called ‘real’ impairments to more ‘nominal’ conditions such as mental distress – – it thereby reinforces a deserving/undeserving dichotomy in welfare policy in relation to mental health.

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Resisting the work cure 4 Later actions have also utilised this strategy, including an occupation of the lobby of the Houses of Parliament against benefit cuts in 2016 and 2018 (DPAC, 2016; Pring, 2018a). 5 The conference was organised by activists from SWAN, DPAC Merseyside, Liverpool survivor-led day centre campaign, Liverpool Momentum and Merseyside Trades Union Council (TUC), and was held on 5th November 2016.

References Atkinson, P. (2016). Welfare reforms and mental health: resisting sanctions, assessments and psychological coercion – part one. Alliance for Counselling and Psychotherapy, 15 April 2016. Atkinson, P. (2017). How do we get mental wealth? Alliance for Counselling and Psychotherapy, 11 ­October 2017. Barr, B., Taylor-Robinson, D., Stuckler, D., et al. (2016). ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Journal of Epidemiology and Community Health 70(4), 339–345. Beatty, C., & Fothergill, S. (2016). The uneven impact of welfare reform: the financial losses to places and people. Project Report. Sheffield: Sheffield Hallam University. Cameron, A. (2014). DWP targets mental health claimants for ESA sanctions, benefits and work. Retrieved from https://www.benefitsandwork.co.uk/news/2717-dwp-target-mental-health-claimants-foresa-sanctions on 30 November 2018. Centre for Mental Health (2017). Briefing 52: Adult and Older Adult Mental Health Services 2012–2016. London: Centre for Mental Health. Chamberlin, J. (1978). On Our Own: Patient-Controlled Alternatives to the Mental Health System. New York: McGraw-Hill. Clarke, J. (2018). Basic income: progressive cloak and neoliberal dagger. Counterfire, 30 March 2018. Comaroff, J., & Comaroff, J. (2009). Ethnicity, Inc. Chicago: University of Chicago Press. Cromby, J., & Willis, M. (2013). Nudging into subjectification: governmentality and psychometrics. Critical Social Policy 34(2): 241–259. Curtis, T., Dellar, R., Leslie, E., & Watson, B. (eds). (2000) Mad Pride: A Celebration of Mad Culture. London: Spare Change Books. Department for Work and Pensions (DWP) and HM Treasury (2015). Department for Work and Pensions’ Settlement at the Spending Review. London: DWP. Disabled People Against Cuts (DPAC). (2016). DPAC Occupy the Lobby of Parliament During #PMQs #NoEsaCut #CutOsborne. Retrieved from https://dpac.uk.net/2016/03/dpac-occupy-the-­lobbyof-parliament-during-pmqs-noesacut-cutosborne/ on 30 November 2018. Duffin, C. (2015.) IAPTs to be co-located in job centres. Pulse Today, 18 March 2015. Dwyer, P., & Wright, S. (2014). Universal Credit, ubiquitous conditionality and its implications for social citizenship. The Journal of Poverty and Social Justice 22(1), 27–35. Frayne, D. (2015). The Refusal of Work: The Theory and Practice of Resistance to Work. London: Zed Books. Free Psychotherapy Network (n.d.) Retrieved from https://freepsychotherapynetwork.com on 30 ­November 2018. Friedli, L., & Stearn, R. (2015). Positive affect as coercive strategy: conditionality, activation and the role of psychology in UK government workfare programmes. Medical Humanities 41(1), 40–7. Friedli, L., & Stearn, R. (2016). Why we are opposed to “jobs on prescription”. Open Democracy, 7 March 2016. Garthwaite, K. (2014). Fear of the brown envelope: exploring welfare reform with long-term sickness benefits recipients. Social Policy & Administration 48(7), 782–798. Gayle, D. (2016). Protesters block streets over plan to embed job advisers with GPs. The Guardian, 4 March 2016. Gilburt, H. (2015). Mental Health Under Pressure. London: The King’s Fund. Grover, C. (2017). Ending reassessment for employment and support allowance for some disabled people in the UK, Disability & Society 32(8), 1269–1274. Harper, D., & Speed, E. (2012). Uncovering recovery: the resistible rise of recovery and resilience. Studies in Social Justice 6(1), 9–25. Hart, E. L., Greener, J., & Moth, R. (2019). Resist the Punitive State: Subversive Knowledge and Strategies of Transformation. London: Pluto Press.

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McKenna, Peters & Moth HM Government (2010). The Coalition: Our Programme for Government. London: Cabinet Office. HM Treasury (2015). March Budget 2015. London: HM Treasury. Kennedy, S. (2017). Changes to the Personal Independence Payment eligibility criteria. House of Commons Briefing Paper 7911. London: House of Commons Library. Layard, R., & CEPMHPG (Centre for Economic Performance Mental Health Policy Group) (2006). The Depression Report: A New Deal for Depression and Anxiety Disorders. London: LSE Centre for Economic Performance. Machin, R. (2018). Personal Independence Payment – a fair deal for people with mental health problems? Social Policy Association, 50th Anniversary Blog Series, 16th April. Retrieved from http:// www.social-policy.org.uk/50-for-50/personal-independence-payment/ on 20 April 2018. Maddock, S. (2012). The DWP Work Programme – The Impact of the DWP Procurement Model on Personal Service Innovation. Manchester: Manchester Business School. McKeown, M., Cresswell, M., & Spandler, H. (2014). Deeply engaged relationships: alliances between mental health workers and psychiatric survivors in the UK. In B. Burstow, S. Diamond & B.  L ­ efrancois (eds). Psychiatry Disrupted: Theorizing Resistance and Crafting the (R)evolution (pp. 193–216). Montreal: McGill/Queen’s University Press. Mental Health and Employment Partnership (2015). Mental health and employment Social Impact Bond. Mental Health and Employment Partnership. November 2015. Retrieved from http://www. socialfinance.org.uk/wp-content/uploads/2016/04/MHEP-SIB-Summary-vfinal.pdf on 30 November 2018. Mental Health Taskforce (2016). The Five Year Forward View for Mental Health. London: NHS England. Moth, R., & Lavalette, M. (2017). Social Protection and Labour Market Policies for Vulnerable Groups From a Social Investment Perspective: The Case of Welfare Recipients with Mental Health Needs in England. Liverpool: Liverpool Hope University/Leuven: HIVA/KU Leuven. Moth, R., & McKeown, M. (2016). Realising Sedgwick’s vision: Theorising strategies of resistance to neoliberal mental health and welfare policy. Critical and Radical Social Work 4(3), 375–390. Moth, R., Greener, J., & Stoll, T. (2015). Crisis and resistance in mental health services in England. Critical and Radical Social Work 3(1), 89–102. NHS Benchmarking Network (2016) NHS Benchmarking Network Inpatient and Community Mental Health. November 2016. Manchester: NHS Benchmarking Network. NHS England (2016). Implementing the Five Year Forward View for Mental Health. Redditch: NHS England. NHS England (2018) NHS mental health job coaches help thousands of people into work. NHS England, 12 June 2018. Retrieved from https://www.england.nhs.uk/2018/06/nhs-mental-health-job-­ coaches-help-thousands-of-people-into-work/ on 30 November 2018. O’Donnell, A., & Shaw, M. (2016). Resilience and Resistance on the Road to Recovery in Mental Health. The Journal of Contemporary Community Education Practice Theory 7(3), 1–18. Patrick, R. (2017). For Whose Benefit? The Everyday Realities of Welfare Reform. Bristol: Policy Press. Powell, A. (2018). Work and Health Programme. House of Commons Briefing 7845. London: House of Commons Library. Pring, J. (2016). Mind boss lies to protesters over DWP contracts. Disability News Service, 3 November 2016. Pring, J. (2018a). DPAC’s universal credit ‘crime scene’ protest is fresh call for action to disabled people. Disability News Service, 19 April 2018. Pring, J. (2018b). Hope for major social security ‘brutality’ campaign after ‘breakthrough’ Labour meeting. Disability News Service, 13 September 2018. Public Law Project. (2013). Government appeal against Work Capability Assessment discrimination ruling is rejected. Public Law Project, 4 December 2013. Roulstone, A. (2015). Personal independence payments, welfare reform and the shrinking disability category. Disability & Society 30(5), 673–688. Shakespeare, T., Watson, N., & Abu Alghaib, O. (2017). Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability. Critical Social Policy 37(1), 22–41. Shefer, G., Henderson, C., Frost-Gaskin, M., & Pacitti, R. (2016). Only making things worse: a qualitative study of the impact of wrongly removing disability benefits from people with mental illness. Community Mental Health Journal 52(7), 834–841. Sedgwick, P. (2015). Psycho Politics. London: Unkant Publishers. Slorach, R. (2016). A Very Capitalist Condition: A History and Politics of Disability. London: Bookmarks.

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Resisting the work cure Survivors History Group (n.d.) Survivors’ history and the survivors history group. The Survivors History Group. Retrieved from http://studymore.org.uk/newsweb1.pdf on 30 November 2018. Taylor-Gooby, P. (2016). The divisive welfare state. Social Policy & Administration 50(6), 712–733. Trade Union Council (TUC) (2013). Press release: Benefit fraud just 0.7 per cent of welfare budget, official figures show. London: TUC. United Nations (UN) (2016). Inquiry concerning the United Kingdom of Great Britain and Northern Ireland carried out by the Committee under article 6 of the Optional Protocol to the Convention Report of the Committee: CRPD/C/15/R.2/Rev.1. Geneva: UN. Viola, S., & Moncrieff, J. (2016). Claims for sickness and disability benefits owing to mental disorders in the UK: trends from 1995 to 2014. British Journal of Psychiatry Open 2(1), 18–24. Walker, C. (2015). A dance of destitution – psychology’s clash over coercion. Open Democracy, 16 June 2015. Warren, J., Garthwaite, K., & Bambra, C. (2014). After Atos Healthcare: is the Employment and Support Allowance fit for purpose and does the Work Capability Assessment have a future? Disability & Society 29(8), 1319–1323. Watts, B., & Fitzpatrick, S. (2018). Welfare Conditionality. London: Routledge. Work and Pensions Committee (House of Commons) (2015). Welfare-to-work: Second Report of Session 2015–16. London: The Stationery Office. Work and Pensions Committee (House of Commons) (2017) 3rd Special Report - Disability employment gap: Government Response to the Committee’s Seventh Report of Session 2016–17. London: The Stationary Office. Wright, S. (2016). Conceptualising the active welfare subject: welfare reform in discourse, policy and lived experience. Policy & Politics, 44(2), 235–252.

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9 MY DISABILITY, MY AMMUNITION, MY ASSET IN ADVOCACY WORK Tafadzwa Rugoho

Introduction A dog in a developed country is better off than me, a disabled person in Zimbabwe. If  you go to developed countries, they have developed advanced policies to improve the ­welfare of dogs and other animals. Their dogs have rights. But here in Z ­ imbabwe I  struggle to get everything as a disabled person. Disabled people are second-class ­citizens. They have no rights. It would have been better if I was created as a dog in a developed country than a disabled being in Zimbabwe. I do not even have assured ­survival. I struggle to get education, employment and access the health facilities. (­Author, to the Permanent Secretary of Higher and Tertiary Education in 2010) People with disabilities account for 15% of the global population according to the World Disability Report (WHO & World Bank, 2011). The same report found that the majority of people with disabilities live under the poverty line with lives characterised by marginalisation and isolation (WHO & World Bank, 2011). Many persons with disabilities do not have access to education, health and employment opportunities and the absence of these opportunities results in high poverty levels, particularly in the global South (WHO & World Bank, 2011). Additionally, persons with disabilities who are poor are not given the opportunity for their voices to be heard in policy and political decision-making to ensure change (Groce et al., 2014). The world has acknowledged discrimination of persons with disabilities and a number of conventions and legal initiatives have followed at regional and global levels to raise awareness and improve disability rights. The most well-known of these is the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006). The CRPD has brought a paradigm shift in disability because it focuses not only on ensuring rights but also on dismantling barriers to the achievement to those rights (UN, 2006). Organisations and individuals have used the above international agreement as well as local laws, to lobby and advocate for better rights for persons with disabilities. This chapter examines the ­particular case of the Southern African country, Zimbabwe, where international legislation has seemingly done little for persons with disabilities. It will start by outlining the context of disability in Zimbabwe and explain how activism formed in the post-colonial context after 144

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the country’s independence. The chapter then discusses some of the barriers that are faced in an effort to access rights by persons with disabilities and why advocacy is important. Lastly, it discusses self-advocacy through my own life, illustrating first hand some of the challenges persons with disabilities can face and also successes. I begin by briefly locating disability in Zimbabwe.

Disability in Zimbabwe Zimbabwe is located in the Southern African region, with an estimated population of over fourteen million people in 2018 and growing (World Bank, 2019). Zimbabwe was once ­regarded as a model in promoting the rights of persons with disabilities in Africa and ­elsewhere due to its history of disability activism (Manatsa, 2015). It was one of the first nations in Africa to enact a disability law and the Disabled Persons Act of 1992 was seen as heralding a new chapter in the promotion of persons with disabilities in Zimbabwe (­Rugoho & Siziba, 2014). Though the law had its shortcomings such as its definition of disability, it was a starting point of social change. Similarly, from 1985 to 2000, Zimbabwe used to have a disability representative in the parliament, and this representative was appointed by the President. Yet, a perusal of the parliamentary debates (Hansard) of 1985 to 2000 shows that the representative of persons with disabilities in parliament made little work of actual issues that affected people with disabilities. As noted by Rugoho and Siziba (2014), the Disabled Persons Act was never fully implemented by government and persons with disabilities did not benefit from this legislation. The main reason for the failure to implement the Act was the reluctance of the government to promote disability issues. Rugoho and Maphosa (2015) concluded that the government lacked political will to promote disability issues. This is further evidenced by the failure to locally domesticate the CRPD (UN, 2006) which it only ratified in 2013. Choruma (2007) thus goes as far to say that persons with disabilities have become a ‘forgotten tribe’ in ­Zimbabwe. I would argue that they have been further marginalised and neglected by government. Additionally, no current statistics exist about disability prevalence and how political and economic environment has created disability in Zimbabwe, especially among children. This is shocking because of the strong political links between the establishment of Zimbabwe and disability. In Zimbabwe, many disability organisations were politically active and historically formed after the Liberation movement in the 1970s, in which a strong disability advocacy community was created (Devlieger, 1995). I will return to this point later but I want to illustrate common attitudes to disability first. Attitudes towards people with disabilities are complex, and entail both negative and ­positive views, but some traditional understandings of disability still exist (Muderedzi et al., 2017; Peta, 2017). An additional factor facing people with disabilities is that of the ­negative cultural beliefs towards people with certain forms of disabilities (Etieyibo & Omiegbe, 2016). Rugoho and Maphosa (2017) further argue that persons with disabilities in Zimbabwe face superstitious beliefs, labels and stigma directed towards them by communities. Poverty seems to have only exacerbated some of these superstitions, beliefs and myths, as well as increased violence towards persons with disabilities in society (Choruma, 2007; Baker et al., 2010; Franklin et al., 2018). The understanding of a ‘curse’ is complicated and a gender issue in Zimbabwe. ­Accusations of witchcraft by parents or relatives particularly affect women, as does violence, and people are blamed for their disabilities as ‘cursed’ and targeted because they have disabilities. 145

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Peta (2017) found that many women with disabilities experience gender-based violence in ­Zimbabwe and this was linked to negative attitudes and superstition but also religious and patriarchal beliefs. Women are also viewed as being punished or ‘cursed’ by giving birth to a child with an impairment, if they gain disabilities or even have HIV/AIDs (Rugoho & Maphosa, 2016). As such, the birth of a child with a disability can become a cause of anxiety, sorrow, pain and suffering to the parents. This is in terms of societal blame and context of poverty, where perhaps the extended family cannot provide long-term support. In most cases, mothers are the ones who are left to bear the responsibility of taking care of a child with disability, as husbands do divorce women due to social stigma and lack of resources to look after such a child (Rugoho & Maphosa, 2016). Franklin et al. (2018) argue much the same for people with albinism, and that they too should thus be seen as persons with disabilities because they experience much of the same discrimination. As indicated above, such negative attitudes and stigmatisation were not always the case and do not exist in isolation from other processes affecting a society. For a long time, it seemed as if Zimbabwe was a model country in terms of disability advocacy. Initially, ­Zimbabwe inherited a culture of Christian charity and medicalisation of persons with disabilities from the British colonial government from the 1880s onwards (Devlieger, 1998; Mpofu & Harley, 2002). Under the colonial government, a number of institutions were established for the care of persons with disabilities and these institutions were supported by the Christian churches (Choruma, 2007). The British colonial government did not have any disability policy for Black indigenous people with disabilities other than vocational rehabilitation, while white disabled people had opportunities to access higher education (Devlieger, 1998). The long legacy of colonial and post-colonial violence (Alexander et al., 2000) meant that the country also had a high number of persons with disabilities (Devlieger, 1995). In ­Zimbabwe, the guerrilla war is known as the struggle for liberation, and much emphasis was put on education, decolonisation of mind and body post-independence (Chung, 2006). An important factor often forgotten is that some of the persons with disabilities were former freedom fighters who had sacrificed for their country (Devlieger. 1995). I will explain why this became important in terms of advocacy in the next section.

History of advocacy in Zimbabwe Persons with disabilities have been advocating for their rights in Zimbabwe for several ­decades (Chimedza & Peters, 1999). Prior to independence in 1980, Black people with ­d isabilities did not have any voice under the colonial government, which was openly repressive of political activism and dissent. The colonial government did not oppress only people with disabilities, but all Black people. During the colonial era, it was the role of the church to lobby for the improvement of all oppressed people, including people with disabilities. Much of the advocacy work for people with disabilities started after independence (Rugoho, 2017). The disability movement in Zimbabwe can easily be grouped into three phases. The first phase is 1980 to 1995, the era during which the disability movement in Zimbabwe was very strong. This era is also aligned with global political activism and legislative changes, for example, 1981 was also the International Year of Disabled People, and political, social and economic demands were thus made to government by persons with disabilities. In the 1980s, a number of legislative acts and policies were also introduced by the government to accommodate persons with disabilities. As stated above, those engaged in advocacy were former freedom fighters who had the political clout and legitimacy to advocate for political change 146

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in terms of the sacrifices they made for their country (Devlieger, 1995). During this era, disabled people’s organisations relied heavily on member subscription fees for their activities and thus, they were also held accountable by their members (Devlieger, 1995). The second phase was 1995 to 2010 where people who had trained in social work, sociology, physiotherapy and other fields became more specialised. This also marked a move away from advocacy towards organisational and bureaucratic development. People with disabilities were relegated to passive participants in the promotion of their rights with substantial amounts of funding given to civil society sectors, including organisations for persons with disabilities – not with. The third phase took place from 2008 and continues presently. The government has adopted a lukewarm attitude towards disability issues, ensuring political support but with no real change in practice. The economic situation in Zimbabwe has also continued to deteriorate during this time, which means that barriers and discrimination toward persons with disabilities have exacerbated. In the next section, I situate myself in this disability history and engage in self-reflection about how difficult advocacy can be when you become a person with disability in the global South. Much of the literature focuses on disability as inherent condition, but many of us become persons with disabilities and this is a ­physical and psychological process. The understanding of rights and advocacy is not something that comes naturally but needs empowerment and encouragement. I explain why, in what follows.

Involvement in disability self-advocacy The 26th of April 1997 was one of the darkest days of my life, as I was involved in a car accident at the age of sixteen. As a result of the accident, I had to stay in hospital for almost two years. I underwent more than nine major operations in an effort to save my life and I was badly injured on my legs, my right arm and my head. The pain was so excruciating that I often wished I had died. I lost both my legs below the knees but managed to retain my right arm but I went through tough physiotherapy and occupational therapy for years. During therapy, there was no effort to empower me mentally to accept my new condition and the emphasis was only on retaining the functions of the body. To me, rehabilitation illustrated a functional medical approach and ableism, in that most effort was put in enabling me to walk again (Campbell, 2009). Rehabilitation was also supposed to empower me p­ sychologically for the challenges ahead but did not do that. The physical pain I faced, due to injuries, was nothing in comparison to the emotional challenges that were to come and for which I was unprepared. In the later years of advocacy work, I understood that rehabilitation c­ entres were more concerned in dealing with the physical body but not mentally empowering p­ ersons with disabilities to deal with issues of stigma and discrimination.

Ammunition or curse? For a person to engage in advocacy, whether for one’s self or other individuals, there is need for mental transfiguration. As noted by Rugoho and Jeffress (2018), some people with disability suffer from self-discrimination or what Campbell (2009) observed as internalised ableism. They self-pity or internalise the ableist norms of society and they see themselves as victims who cannot change their situation. They become demoralised and dejected. This also affected me at one point. A person who played a role in changing my state of mind was Jane Beaty. 147

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Jane was a qualified physiotherapist and involved with a lot of missionary work with her husband. She taught me that the fact that I was now disabled did not mean the end of life, which was a common belief at that time. She encouraged me to dream big by sharing ­motivational books about American persons with disabilities. These people were scientists, scholars and celebrities – amongst other things. Having worked with persons with disabilities for years both in America and the global South, she knew how to prepare me for the challenges ahead. One thing she emphasised was that I should not let other people stop my dreams because of my disabilities. In most cases, persons with disabilities suffer from accepting identities that are ascribed to us by the community. These ascribed identities have a potential to play a positive or negative role in our aspirations as observed by Riddell, Baron and Wilson (2001). Jane emphasised that I should determine my identity and fight for my rights. Jane also continued to ask about the progress I was making in life and I feel this constant encouragement is important. When I enrolled back at school after the hospitalisation, she would send e-mails of encouragement. When I graduated with my first degree, she asked if I had plans to pursue a Master’s degree. In a nutshell, Jane contributed immensely towards empowering me to be a self-advocate and introduced me to the idea of disability rights. Persons with disabilities can accept and celebrate their diversity. They can understand that their disability is not as a result of some curse but should be embraced as part of the diversity in a community. As stated above, persons with disabilities in Southern Africa are believed to be victims of a curse (Etieyibo & Omiegbe, 2016). This decision is individual and persons with disabilities have to decide if their disability is a curse or an asset. Due to these beliefs, many choose to follow religious movements, which give spiritual and communal support, sometimes also promising miracles. As a person with disability myself, I had to do a lot of thinking pertaining to who I now was. What path of life was I going to take? This decision would influence all the actions that I had to take afterwards. Whilst growing up, able-­ bodied, I used to see people with disabilities begging and I would see them in buses, shops, streets and markets. As observed by Rugoho and Siziba (2014), some persons with disabilities have taken begging as a way of life and gain their livelihoods from it. I refused to see my new status as a curse or begging as an outcome. I had to use my disability as an asset. I saw quite a number of opportunities that I had the potential of grabbing using my disability. Disability became my ammunition.

Disability is our ammunition One incident that I vividly remember where I used my disability as an ammunition and asset was in 2008. I had graduated with my undergraduate degree and Zimbabwe was going through a lot of economic challenges. I had lost my passport to thieves in 2003 but I had not bothered to report it to the authorities. The law mandated to report such thefts to police and then you would only be issued with a new passport after six months. At that time, many Zimbabweans were migrating to other countries and it was hard to be issued with a passport due to over demand. The passport office was also ill equipped to deal with the large numbers of people who were applying for passports. I wrote them purporting that I wanted to receive medical attention in another country, so I was in need of an emergency passport. I had to use this approach because government officials understand disability from a charity and medical perspective. My application was turned down and I was issued with a temporary travel document. I approached the Chief Passport Officer to complain and when she dismissed me, I went straight to the President’s office. I was interrogated by many people as to why I wanted to see 148

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the President. I explained to them that I was in need of a passport to travel. I was referred to another office of the Deputy Chief Secretary to the President. On arriving there, I removed both my artificial legs and told him that I was not going anywhere until my case was solved. The Deputy Secretary was speechless. He started calling the head at the passport office and he instructed them that they should issue me with a passport immediately and provided me with a driver who took me to the passport office. The above incident illustrates how ­d isability can become your ammunition and you can use people’s personal attitudes toward disability politically – making what is personal to them, political for you. However, perseverance and instilled self-belief is also needed in advocacy.

Perseverance in disability self-advocacy Achieving a desired outcome in the disability movement takes time, because change is ­often a slow process, not an event. Cohen (2009) gives a guide to parents’ and clinicians who would want to be involved in advocacy work for persons with disabilities, and his advice is that advocacy is a long-term commitment. In the global South, disability advocates need to be extremely patient, and they need to wield a higher degree of perseverance, especially in the case of Zimbabwe where many disability inclusive policies do not exist. If you are doing advocacy work in a country which has a disability policy, half your work will already have been done, but in countries without this, you are dragged from one department and government ministry to another. In 2010, I wanted a residential stand to build a house, as I had just married and had one child at that time. Through my studies, I knew that I could get a residential stand from the government, so I visited the office of the National Advisor on Disability Issues. They wrote a letter recommending the Ministry of Housing and Local Government allocate me a residential stand. I attached the recommendation letter with my personal application but by the time I applied, I was told that there were thousands of people ahead of me who were also waiting to be allocated. The process of getting the residential stand was not a walk in the park even if I was armed with a recommendation letter. I visited the office of the Director of State Lands thrice a month and sometimes I would go there twice a week. The office recommended that I should phone them to find out about the progress of the matter. In my years of advocacy, I said ‘no’ to phone calls because I believe people have a tendency to lie when ­communicating on the phone. Going to the Director’s office was not easy because his office was on the ­sixteenth floor and sometimes, I would go and find the elevators not working and I had to climb the stairs. This was not an easy task and the Director would see this as I would arrive in his office sweating and tired. He would tell me that I should have made a call whilst downstairs and he would have come down to see me. Visiting offices frequently is what I termed ‘office nuisancing’: you become a nuisance and visit them when they least expect you and you also need to visit them during their lunch breaks. The more that I visited for a genuine cause, the more they got irritated or felt guilty and I eventually got what I had a right to. I have used this strategy of ‘office nuisancing’ on many occasions and it worked. I have encouraged my friends with disabilities to adopt this strategy when they are dealing with government officials. However, this only works if you are educated and you know your rights too.

The role of education in self-advocacy Writing on the role of education of persons with disabilities, Rule and Modipa (2012) argued that alongside an education which many persons with disabilities have been denied, they 149

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need to gain confidence that education will give them a voice they can use. Rugoho and Jeffress (2018) found that persons with disabilities who have had an education are more likely to participate in issues that affect them, than those who are not educated. This is made possible by the knowledge that they would have acquired through learning processes. Education allows you to discover how best to approach issues with research evidence and it further gives confidence (Rule & Modipa, 2012). I have done advocacy work in company of people with less education and over the years, I have observed that the majority fail to articulate the issues that affect them effectively. They lack awareness of their rights and knowledge of the government laws and policies that can aid them. Waldron (2013) argues that governments have an ultimate duty in the promotion of human rights of their citizens. This view is also shared by Besson (2015) who further points out that all institutions of the government are primary duty bearers. Persons with disabilities in Zimbabwe do not have access to education and as a result, the majority of people are unaware of their rights, which is a situation of enforced ignorance of rights holders. Degener (2016) observed that persons with disabilities are now seen as rights holders and the CRPD has brought with it paradigm shifts in the understanding of disability t­owards human rights issues (UN, 2006; Degener, 2016). Unlike when persons with disabilities were seen from a charity and medical perspective, which gives them no rights, this is a move ­towards disability rights (Degener, 2016). Despite this, some disability activists are still trapped in the cocoon of the charity models and have not begun advocacy of rights and education on rights. Such activists think that they need to beg the authorities to be given a space to participate, when instead they are entitled to that space. In all cases where I have done advocacy work, I never allowed government officials or any authorities to treat me from a charity perspective; I have always demanded my rights. When doing disability activism or advocacy, we usually rely on local laws or international statutes. Larson (2014) observed that activists use national and international disability laws when they are seeking the improvement of disability issues and in most national laws there is a link with international conventions. As stated above, Zimbabwe signed the Disabled Persons Act in 1992 (Chengeta & Msipa, 2012; Manatsa, 2015; Mpofu & Shumba, 2013), but quite a number of people involved in disability activism do not understand the contents of this Act. Even some government officials do not understand how this Act should be interpreted. In 2008, I wanted to import a car and I wanted to access the disability rebate facility which allows you to import a car without paying import taxes. One of the requirements of accessing the rebate is that one should be a licenced driver with a physical disability. Despite being initially refused, I presented my case and the official tried to give flimsy excuses but I stood firm. I threatened to approach the court and I then left without any agreement. Three hours after I had left their offices, I received a call informing me I could import my car. Education also gives that extra leverage and networks with other disability activists in other countries now created through the Internet and social media. In 2006, when I was still studying my undergraduate studies, I was introduced to a network of other persons with disabilities. This platform allowed people to share their success stories and challenges. When I shared the challenges that we were facing, as disabled students, they offered solutions, which I in turn shared with other students. In 2008, together with my new friends and allies, we took on the government of Zimbabwe to facilitate accessible voting. At that time, the Electoral Law did not treat persons with disabilities as people with agency who had a right to vote. We challenged this discrimination successfully and now when voting, people with visual impairments or any other impairments are supposed to be assisted by a polling officer in the presence of a police official. 150

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As I climbed the academic ladder, I noticed that people started listening to me and that my professional esteem and socio-economic status changed. When I enrolled for my ­doctoral studies, officials also listened to my opinions and suggestions. Having realised this, every time I write a letter to authorities, I list my qualifications, and I never wrote any unanswered letters. However, sometimes you need to undertake more confrontational strategies.

Confrontation Eilstrup-Sangiovanni and Bondaroff (2014) found that confrontational advocacy strategies were used internationally especially by trans-border activists in the environmental sector. ­Similarly, Athanases and de Oliveira (2007) argued that while advocacy requires persistence, sometimes it requires confrontation too and it is effective when there is a legitimate issue linked to inequalities, discrimination or protection of human rights to be addressed. When I have failed in use of all other avenues to access my rights, I have resorted to open confrontation. The use of confrontation requires one to keep emotions in balance and when I use this method, I try by all means to remain ‘emotionally checked’. For instance, when I wanted a scholarship to study for my Masters in development studies, I requested to see the Secretary for Higher and Tertiary Education, but the personal assistant told me that I would see him only if I booked an appointment with him. Even after I had explained to him that I was coming from the Office of National Advisor on Disability, she still refused. The National Advisor on Disability is found in the Office of the President and Cabinet and he is responsible for advising government on disability issues. I caused some trouble by telling them, point blank, that they were violating my rights as a disabled person and was shown into the Secretary’s office and got my scholarship. Yet, confrontational disability politics also means going against those around you.

Confrontation as separation from the group Advocacy sometimes requires an individual to be selfish, and this is why activists are often viewed as single-minded people. That is the survival of the fittest mantra because one needs to do a cost benefit analysis of going as a group or as an individual. In 2010, I wanted to do a Master’s degree programme but I knew quite a number of persons with disabilities who also wanted to do the same. I requested a meeting with them and we agreed that we collectively needed to go and see the Minister of Higher and Tertiary Education to ask him for scholarships. On the day that we had agreed to go, others gave excuses and did not show up. I was angry with the group and felt frustrated and let down but did not give up, as disability politics, as I have already illustrated, can be done alone. I decided to fight my war alone and applied for a place at one of the local universities. The university accepted my application and armed with the acceptance letter, I then approached the national Advisor on Disability and I asked him to write me a recommendation letter which I would take to the Ministry of Higher and Tertiary Education. At first, he was not willing to write a recommendation letter for me and gave excuses, so I had to strategise. I told him that if he could not assist, I was going directly to the President to present my case. Having dealt with me on several occasions, he knew that I was serious and wrote the recommendation letter to the Ministry. During all these efforts, I had to understand that other people I was working with did not have the same single mindedness as myself and my experience with successful solidarity disability advocacy. As an advocate, I had to sacrifice other people to make sure that I succeeded in my overall mission, to advocate for myself as a person with a disability. 151

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Confrontation and being a role model When I talk of my achievements to other persons with disabilities, I see them inspired to do the same. Some youths have asked me to mentor them in self-advocacy, and for example, one of their desires was to have the government pay for their education – notice they did not say right. I had been working with a number of young persons with disabilities in the areas where they said they needed assistance and required empowerment of disability rights, but this can be a hit and miss process. Sometimes, these young people would try to implement my strategies and sometimes they succeeded, and sometimes they failed. For those who failed to achieve their mission, I welcomed them when they come back to me for assistance in form of another advocacy strategy but learning failure can be difficult. Having to keep trying, fighting and prevailing on behalf of others as well as yourself can be a confronting process, especially knowing your own limits in terms of advocacy work.

Conclusion Using self-advocacy, one can achieve desired outcomes in terms of the recognition of rights but early empowerment and understanding of disability as positive ammunition is critical. You also need to understand that these types of self-advocacy strategies are not one size fits all, hence those who try disability self-advocacy need to understand the scenario and issues at stake. Government officials will always make it hard for persons with disabilities to book appointments with those in authority or heading relevant departments and ministries, and we can get curtailed by bureaucracy but we have to persevere and protest. Disability advocates need to know the best person to approach and who can solve disability issues. I recommend going to the very top, if possible, to ensure policy changes. Change will never be achieved in a short space of time, especially in countries like Zimbabwe, where there are no disability policies but each small success means a victory in someone’s life, in ensuring an education, a feeling of power and defence of their rights to get to vote, to drive a car or build a house for a family.

References Alexander, J., McGregor, J., & Ranger, T. O. (2000). Violence and Memory: One Hundred Years in the ‘Dark Forests’ of Matabeleland, Zimbabwe. Nairobi: Heinemann and James Currey. Athanases, S. Z., & de Oliveira, L. C. (2007). Conviction, confrontation, and risk in new teachers’ advocating for equity. Teaching Education 18(2), 123–136. Baker, C., Lund, P., Nyathi, R., & Taylor, J. (2010). The myths surrounding people with albinism in South Africa and Zimbabwe. Journal of African Cultural Studies 22(2), 169–181. Besson, S. (2015). The bearers of human rights’ duties and responsibilities for human rights: a quiet (r) evolution? Social Philosophy and Policy 32(1), 244–268. Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. Cham: Springer. Chengeta, T., & Msipa, D. (2012). Getting disability rights into the mainstream of human rights ­advocacy: an appraisal of Zimbabwean disability rights policies and legislation. South African Journal on Human Rights, 1–34. Chimedza, R., & Peters, S. (1999). Disabled people’s quest for social justice in Zimbabwe. In F. ­A rmstrong & L. Barton (eds). Disability, Human Rights and Education: Cross-Cultural Perspectives (pp. 7–23). Philadelphia: Open University Press. Choruma, T. (2007). The Forgotten Tribe: People with Disabilities in Zimbabwe. London: Progressio. Chung, F. (2006). Re-living the Second Chimurenga: Memories from the Liberation Struggle in Zimbabwe. Uppsala: The Nordic Africa Institute. Cohen, M. (2009). A Guide to Special Education Advocacy: What Parents, Clinicians, and Advocates Need to Know. Philadelphia: Jessica Kingsley Publishers.

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My disability, my ammunition Degener, T. (2016). Disability in a human rights context. Laws 5(3), 35. Devlieger, P. (1995). From self-help to charity in disability service: the Jairos Jiri Association in ­Zimbabwe. Disability & Society 10(1), 39–48. Devlieger, P. J. (1998). Representations of physical disability in colonial Zimbabwe: the Cyrene ­M ission and Pitaniko, the film of Cyrene. Disability & Society 13(5), 709–724. Eilstrup-Sangiovanni, M., & Bondaroff, T. N. P. (2014). From advocacy to confrontation: direct ­enforcement by environmental NGOs. International Studies Quarterly 58(2), 348–361. Etieyibo, E., & Omiegbe, O. (2016). Religion, culture, and discrimination against persons with ­d isabilities in Nigeria. African Journal of Disability 5(1). Franklin, A., Lund, P., Bradbury-Jones, C., & Taylor, J. (2018). Children with albinism in African regions: their rights to ‘being’ and ‘doing’. BMC International Health and Human Rights 18(1), 2. Groce, N. E., London, J., & Stein, M. A. (2014). Inheritance, poverty, and disability. Disability & ­Society 29(10), 1554–1568. Larson, D. A. (2014). Access to justice for persons with disabilities: an emerging strategy. Laws 3(2), 220–238. Manatsa, P. (2015). Are disability laws in Zimbabwe compatible with the provisions of the United Nations Convention on the Rights of Persons with Disabilities (CRPD)? International Journal of Humanities and Social Science Invention 4(4), 2319–7714. Mpofu, E., & Harley, D. A. (2002). Disability and rehabilitation in Zimbabwe: lessons and implications for rehabilitation practice in the US. Journal of Rehabilitation 68(4), 26. Mpofu, J., & Shumba, A. (2013). Disabilities and entrepreneurship in Makonde rural community in Zimbabwe. Studies of Tribes and Tribals 11(2), 135–144. Muderedzi, J., Eide, A. H., Braathen, S. H., & Stray-Pedersen, B. (2017). Perceptions and treatment of children with cerebral palsy among the Tonga of Binga in Zimbabwe. Cogent Social Sciences 3(1), 141–144. Peta, C. (2017). Gender based violence: a “thorn” in the experiences of sexuality of women with ­d isabilities in Zimbabwe. Sexuality and Disability 35(3), 371–386. Riddell, S., Baron, S., & Wilson, A. (2001). The significance of the learning society for women and men with learning difficulties. Gender and Education 13(1), 57–73. Rugoho, T., & Jeffress, M. (2018). My class, my disability, my struggle. In M. Jeffress (ed). International Perspectives on Teaching with Disability: Overcoming Obstacles and Enriching Lives (pp. 50–61). Oxford: Routledge. Rugoho, T., & Maphosa, F. (2015). Gender-based violence amongst women with disabilities: a case study of Mwenezi district, Zimbabwe. Gender Questions 3(1), 97–113. Rugoho, T., & Maphosa, F. (2016). Ostracised: experiences of mothers of children with disabilities in Zimbabwe. Gender Questions 4(1), 1–18. Rugoho, T., & Maphosa, F. (2017). Challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe: the case of Chitungwiza town. African Journal of Disability 6, 1–8. Rugoho, T., & Siziba, B. (2014). Rejected people: beggars with disabilities in the city of Harare. ­D eveloping Country Studies 4(26), 51–57. Rule, P., & Modipa, T. R. (2012). “We must believe in ourselves”: attitudes and experiences of adult learners with disabilities in KwaZulu-Natal, South Africa. Adult Education Quarterly 62(2), 138–158. United Nations (UN) (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations. World Bank (2019) Population Zimbabwe. Retrieved from: http://data.worldbank.org/indicator/ SP.POP.TOTL?locations=ZW Waldron, J. J. (2013). Citizenship and dignity. New York University School of Law, Public Law ­Research Paper No. 12–74. Retrieved from https://ssrn.com/abstract=2196079 on 30 August 2018. World Health Organisation (WHO) & World Bank (2011). World Report on disability. Geneva: World Health Organisation.

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PART IV

Belonging, identity and values Diverse coalitions for rights

10 DISABLED MOTHERS OF DISABLED CHILDREN An activism of our children and ourselves Liz Crow and Wendy Merchant Introduction We are disabled mothers based in the United Kingdom (UK), one to a disabled child, the other to a disabled teenager. We are also long-time activists and this chapter has emerged from a series of personal conversations about what our parenting circumstances have meant for our activism. What has been the impact on its form and reach and on our sense of ourselves as activist? What does this mean for our children? What might our experience offer to other disabled parents of disabled children in understanding their own possibilities for activism? And what might our learning mean for the wider disabled people’s movement and for activism beyond? The points we make are not exclusive to being a disabled mother of a disabled child, but the knowledge and practices we discuss here have come to us directly through that experience. The commonalities and insights that have emerged will be relevant to others in similar parenting situations, including non-disabled parents. Disabled fathers, too, are likely to recognise aspects of their experiences in our account and, as parenting arrangements shift, we hope that they will add their voices to the conversation. Our children are both minors, but our responsibilities and the demands made upon us are likely to extend into their adulthood, and so our experiences may strike a chord with parents of adult disabled children too. However, the relevance of what we have learnt extends beyond parents alone to a much larger activist community and practice. Our intention here is to offer ideas and observations for others to think with: to recognise themselves in our experiences, to draw upon as they work alongside disabled parents of disabled children, and to consider as part of their own broader activist practice. For ease of reading, within this chapter, we mainly refer to ourselves as disabled mothers, not disabled mothers of disabled children and young adults. Mostly, we choose to refer to our disabled child and disabled teenager as our kids, as this is what they are to us: wonderfully complex, maddeningly intelligent, fiercely adored kids, who exist in a complicated world.

Our lives as disabled parents of disabled children How do we convey our lives: the extent to which we’re dancing around, spinning plates and firefighting? Every other week, there is crisis, and perma-pressure runs throughout. Always, 157

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there is the knowledge that we’re hanging in on goodwill and fury and, at any time, it can all come crashing down. Whilst writing this chapter, we have both faced round upon round of fending off our kids’ expulsion from education; nothing is certain and the future is scary for much of the time. The responsibility feels immense: fear that a word or action out of place might bring everything – our kids’ futures – crashing down. We know other disabled parents of disabled children who live similar lives. In this chapter, we have not specified our kids’ impairments, partly because we have steered away from anything biographical about them, but also crucially because so much of what we are grappling with lies outside them and in the society we occupy. It is for this latter reason that we have included minimal information about our own impairments. In our encounters with professionals, who occupy so much of our lives, both our children’s needs and their exclusion are often interpreted as character flaws – theirs or ours – and our activism can feel more like special pleading. The demands we make on behalf of our kids become entangled in assumptions about our fitness as parents and our unfitness as disabled women. Often, there is almost nothing left for anything intentionally activist – no time and energy that is not directly related to our kids’ circumstances and nothing else to give – with the result that our activism depends on happenstance, a contribution made on the coattails of any progress we make with and for our kids. In those moments where there is time and energy left over, sometimes all that matters is to enjoy it with our kids, to ensure that our sense of them, our relationship with them, is not subsumed by the larger context. Whilst scarcity of time and energy is routine for parents, it is the additional battling, fending off and jeopardy running through disability that makes us forgo strikes and protests that we want to support and watch at a remove marches to celebrate a hundred years of partial-suffrage. Instead, we are responding to unscheduled challenges for our kids, responsibilities both domestic and work, to trying to manage our own health. Immediacy keeps us from rally and picket line, and our absence reinforces our invisibility. This is the space from which we write this chapter. Our conversations might have stopped at therapy or camaraderie, except that we realised how much we have learnt: knowledge and skills that are a gift to activism. We have become acute observers of human behaviour and detail, translators between languages (back and forth between social and medical models), champion negotiators, and managers of stress on a grand scale. But we have also learnt to grab activist moments and to recognise activism in spaces where we had not seen it before.

Campaigner, advocate or activist? Our focus in this chapter is the activism that we engage in as disabled mothers – how it has been formed or shaped by our experiences – rather than a commentary on what we have learnt about being a disabled mother of a disabled child. We are referring primarily to disabled people’s activism (and, as we address below, that overriding focus can sometimes be a frustration), though much of what we write about can be applied more broadly. We want to be clear about what we mean, as disabled mothers, when we refer to activism. Various terms are used to talk about the involvement, individual and collective, of parents of disabled children in accessing services. Terms such as advocate, campaigner and activist are used, at times interchangeably, but we consider they refer to distinct roles, albeit often overlapping and merging.

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Advocacy, in our usage, is the act of supporting our children by being alongside them and, as Ryan and Runswick-Cole (2009) suggest, ‘interceding’ on their behalf. Self-­ advocacy is the tools we teach our children to act on their own behalf. Advocacy can be the personal or collective pursuit of solutions and progress for our own child or group of children, by urging, persuading and arguing for the everyday inclusion of our children. It can be an all-consuming role, yet primarily focuses on, or is driven in response to, the individual child. Campaigning, as we use it here, is an activity that intentionally extends ambitions for change beyond the immediate needs of our own child and for broader benefit, e.g. marches and a petition to lobby for access to a play-space for disabled children. Undertaken by individuals or through informal groups or member organisations, campaigns work in an organised way towards specified goals. Activism, here, often uses many of the same tools as advocacy or campaigning (letterwriting, petitions, marches, and so on, though also extending to methods that are more confrontational), but it does so with an understanding of the wider social and political context and relations of power in which both, we as disabled mothers and disabled children, are situated. It is overtly political, involving the pursuit of substantive structural change and cultural shifts. At its heart, is a shared understanding of the machinations, from neoliberalism to disablism, which create and constrain our life worlds and those of our children. Whilst the three roles are intrinsically connected, as an advocate, we might pursue our child’s access to a local play-space; as a campaigner, we might lobby to create a more widely community-accessible play-space; as an activist, we will challenge the deeper structures and principles that determine the comprehensive and permanent inclusivity of that play-space and of facilities beyond. Repeatedly battling for the inclusion of our kids, we find our own advocating almost inevitably crosses readily into campaigning and, in turn, into activism. The lines between the three blur constantly and each can contain aspects of the others, but for us, our activism is marked by an intention to go deeper and further into change. Before we make more detailed observations on activism as disabled mothers, we chart our contrasting personal routes into activism and how they interweave with our experiences as disabled mothers of disabled children. For one of us, activism emerged through advocating for her child; for the other, the onset of impairment in her child first disrupted, and then worked to reorient, many years of activism.

Dawning of activism: Wendy’s route to activism My activism emerged from the shock of my lived experience as a mother of a disabled child in the UK. A dawning realisation of how little value is placed on the lives of disabled children and adults by those who are not disabled. An emerging awareness that impairment and disability had been the ‘elephant in the room’ throughout my life. That the depression I had experienced since adolescence, and which had seen me admitted to mental health wards on more than one occasion, meant that I too fitted the category of ‘disabled’. Growing up in the UK in the 1970s and 1980s, the message I received was clear: disability was something ‘others’ had; it meant being separated from the rest of ‘normal’ people as that was ‘best for us all’ and it was to be avoided at all costs. From the boy in our street who had Down syndrome and was bused to a special school every day, to several large hospitals nearby where adults with learning disabilities lived or those with mental health conditions were ‘treated’, I learnt that disability meant strangeness, separation and exclusion.

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When I started to struggle with depression, overwhelmed by a big black cloud which both paralysed and terrified me, I knew this was not good. I tried to fight against it, using food, alcohol, work, anything, to keep it at bay. My first admission to a mental health unit, the same big hospital I had learnt to fear in my childhood, was an abusive experience. Hard-faced nurses, who regularly aggressively restrained other patients, warned me of the dire consequences of not conquering my depression: if I failed to try harder and return to my ‘normal’ life, a life of prescription drug-dependence and worklessness awaited me. After discharge, I limped along for several years, before the black cloud consumed me again. My second experience of a mental health unit was more positive; this time I met some nurses and doctors who cared. For several years I was enveloped in the mental health system, as an inpatient, day patient, outpatient, a resident of supported housing, as I slowly ‘recovered.’ My friends also had long-term mental health problems; sadly, three took their own lives, and the rest struggled on with daily existence, trying to overcome our challenges. My eyes were opened: these were not people who needed to be separated, just nurtured, cared for, like me, wanting others to give us a chance to fully participate in life. I felt transformed by this experience, and eventually, I was keen to resume my career as a nurse, share my newfound wisdom and care for others. However, several visits to my employer’s occupational health department stopped me in my tracks. Yes, I was told, you have made great progress, but our priority is the patient, you can only come back when you have stopped your medication, which will ‘prove’ that you are ‘better’. I understood: depression was seen as a flaw in my character, I was a woman with a ‘history of mental health problems’, a potential ‘risk’ to others, a person to be monitored, someone ‘other’ than the norm. I learnt to hide my experiences, my time as a ‘mental health patient’, since it could bring harm, call my competence into question and, perhaps, end my career. I engaged in life, fell in love and we decided to start a family. I was a ’new’ person: a qualified nurse, with a job, a purpose and a future. If I can juggle all this, I thought, having a baby will be the icing on the cake, my badge of ‘normality.’ The pregnancy was not easy, the birth extremely difficult, and when my baby had a seizure I had to argue with health professionals in order for them to act. I was shocked that my account was viewed with scepticism, when my experience as a nurse was so different. Wearing a nurse uniform seemed to encourage my colleagues to listen to what I said but when wearing maternity pyjamas my views were almost ridiculed. Scepticism or mistrust of my account or view has been, and remains, a key part of my interactions with health professionals. Perhaps, my history of ‘mental health problems’ is explicit in my or my child’s medical records. Whatever the reason, I remain wary when meeting with professionals as a mother, and I am conscious of my demeanour, language and approach to avoid being written off as a ‘mother with a history of mental health problems’. Back to activism: my engagement in activism grew out of spending time with a group of mothers who shared my experience of advocating for their child while trying to overcome humiliating interactions with ‘professionals’. Each mother had spent time and energy advocating for their child to be given a place at a ‘special needs’ playgroup and then advocating with the education, health and social care professionals to navigate and obtain the support their child needed from them. The playgroup provided speech and language therapy, physiotherapy, occupational therapy and behaviour support, in a ‘safe’ space and was viewed as an oasis by us all. Suddenly we were told, without consultation or involvement, that the playgroup that we had worked so hard to access and navigate was shut. We shared this experience and we were all left with a raging anger, an overwhelming sense of powerlessness, that brought us together. We wrote letters to anyone and everyone with power, we met the local 160

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Member of Parliament and Councillors, we attended meetings loudly and clearly shouting our frustration and dissent against this decision. We tried to enlist the support of the local paper, who politely declined our invitation to join our campaign, preferring to focus on the need for a slower speed limit on a road where their editor had crashed his car. The result? The playgroup remained shut but a group of mothers was formed that met and supported each other and went on to obtain the services, therapy, benefits and education that our children, and we, needed to develop and progress. For me, this was the start of my journey into the world of disability activism, a world which understands that disability is so much more than an individual impairment and explains how much suffering is caused through the ‘othering’ of those labelled as ‘disabled’. I gained an understanding of the power and control exerted by the neoliberal concept of disablism (Goodley, 2014) and its impact upon me, and my child’s, lived experiences. Activism, I realised, takes many forms but it is driven by a collective drive for change. It is powered by a sharing of abusive and discriminatory experiences out of which emerges a drive for emancipation. Out of emancipation comes liberation and I have gained a ‘letting go’ of the shame I once felt of being ‘different’, wrong and a misfit. It is this that drives my activism, a desire for liberation for my child and others like her, powered by the shared experiences of mothers like Liz.

A life of activism transformed: Liz’s route through activism My activism preceded parenthood by almost two decades. In a brief disability awareness session, I was introduced to the idea of the social model of disability and, in an instant, everything about my experience as a disabled person changed. By separating impairment and disability – where impairment was of the body/mind and disability was socially created – the social model showed me that the exclusion I was experiencing did not emerge from my physiology but from external social structures. Now, I looked back on my struggles with education, with battles to be able to take exams in a form accessible to me or even to continue my education at all, and my conflicts with the medical profession, where using a wheelchair was regarded as character failure, and I understood them for the discrimination they were. But the social model went further, because if exclusion was socially constructed then it could also be unconstructed, reconstructed. It was an instant that shifted the trajectory of my life. Then and now, it has defined how I live, who I am. To understand my world so differently moved me from personal predicament to collective experience. I joined a burgeoning international movement of disabled people just beginning to try our hand at civil disobedience and direct action. Through chants, chains, sit-ins, blockades and more, we created a community and made ourselves visible in public spaces as powerful and resolute. We were images of disabled people as others had not known us to be and we often had not understood of ourselves. From securing the accessibility of whole bus fleets to being instrumental in the ending of the Telethon fundraiser, we discovered our power to influence and became bolder, and we made change. It was an extraordinary time to be involved, where everything felt possible, a moment in history. The more deeply I became involved, the more apparent it became that the principles of the social model went beyond disability to be universal, an explanation of how injustice is structured into societies. As I expanded my activism to Stop the Clause marches (opposing the 1988 ‘Clause 28’ legislation that banned the ‘promotion’ by local authorities of homosexuality) and anti-British National Party protests (in response to the dramatic rise in racist attacks following the opening of the Neo-Nazi headquarters in the town of Welling), 161

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I realised the fundamental issues were the same: that of humanity, fairness, justice, kindness, caring for our world, in the context of political and institutional structures that mitigated against them. While the specific manifestations of injustice might vary, they were fuelled by similar values and rooted in the same imbalances of power. I found myself embedded in an interconnected movement for change and my interpretation of events, from the personal to the global, inhabited that context. In shifting my perspective and stretching my world view, I realised that I was an activist, not only through what I did but through my outlook on life; my activism resided in both activity and identity. To understand the world as socially-created means forever interpreting events differently; to live with political consciousness is itself activist. Once that outlook becomes central to who you are, then every encounter has the potential to be activist: the casual conversation, the everyday choices, simply being present as a disabled person, because each has the potential to challenge the status quo. I became a parent in my late 30s. Life become more local and domestic, but still threaded through with activism: less time spent on the streets with blockades (though I managed occasionally, my small child on my knee), and more spent tackling parental access to the local school or challenging assumptions about my fitness to parent. For a disabled person to be a parent at all was a surprise to most people; simply to be present was to confront prevailing notions of disabled people and disabling structures. From encountering injustice to the making of everyday decisions and to the need to minimise the impact of exclusion upon my child – across maternity hospital discrimination, charity fundraisers held at nursery, and the games we played at home – the repeating refrain became ‘what more can I do with this?’ When my child, aged two, was found to have some small impairment, we were propelled into the medical system that, for years, I had worked so hard to avoid for myself. I was not a model parent, instead routinely questioning the assumptions and values underlying medical advice. To question treatments and management plans and the need for surgery was motivated by protecting my child and wanting the best for her, yet also propelled by an activist outlook that did not regard impairment as tragedy or attribute exclusion to it. We would have our six-monthly forays into the medical world, but between times, we worked to our own normality. In the early years, I was predominantly a disabled parent of a non-disabled child. It wasn’t until later that I became more distinctly a disabled mother of a disabled child. Where Wendy’s experience became a route into activism, mine, for a long time, caused my activism, almost, to hit the buffers. And yet, despite three years of all-encompassing crisis management, of wrangling medical and education services that would not yield, of trying to keep my child safe, the activism was also always there, bubbling under the surface, and more imperative than ever. It was being activist that fuelled my interpretation of events and became instrumental to how I responded, even as that left us, mother and child, as a tiny unit to work things out, tough things out, for ourselves. It was activism that held me steady by giving me a powerful context for what was happening and suggesting ways to approach it, and activism that, even in extremis, left me deliberating on how our responses to our circumstances might have wider relevance, how they could be of value beyond ourselves. Even as I was able to do next to nothing directly activist for a long time, I realise now that those three years become a kind of meditation on activism. Circumstances interrupted the flow of my earlier activism and redefined its form; they caused me to broaden my notions and practices of activism. At the heart of those years, despite the insistence of professionals, my task was not to shoehorn my child into a system that caused harm, but to create a kind of 162

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holding space in which we could find a way forward. I have learnt of activism that sometimes it warrants the same: not a forcing through of change, but a holding of space so that change can be born.

The ethics of our writing At the core of our activism, and in the writing of this chapter, it is vital that we consider the privacy and wellbeing of our children, and of ourselves. Our stories of being mothers to our kids are not ours alone to tell and, even as our actions seek change on a broader scale, they are first driven by the imperative to protect our kids; the decisions we make in our writing are rooted in that. Whilst we were committed to publication because we realised that our observations could be of value to a wider audience, we agreed that if either of us became concerned that we were crossing our ethical line, then we would publish under pseudonyms. As our conversations continued and the chapter took shape, it became apparent that our observations focused less upon the specifics of our children and much more on our own experiences. Nonetheless, our publishing comes with their blessing, and their own versions of the story still wait in the wings to be told. Our second consideration was our own privacy and wellbeing, though we have found sharing our experiences and using them for broader social and political change to be an essential part of that wellbeing. Throughout our writing, we have continued to support each other, sharing our experiences and practical suggestions relating to each other’s kids, and drawing on what we have learnt over the years. Our lives are written into this text, and vice versa. We became advocacy, campaigning and activism in practice even in the writing of the chapter and, even though it often felt that we had little left to work with because of our everyday demands, there was sense that we must, because how could we not. Clearly, it has been our decision what to tell, and what not to tell, of our experiences, which at times have been extreme, and our aim is that this chapter might support others to know their own experiences as more shared and their activism as more possible, as we have both learnt in the writing of it.

Observations of activism as disabled mothers of disabled children Our routes into activism Our experience is that becoming an activist can appear to happen in an instant (Liz’s experience), but it can also be more gradual and undefined. Wendy’s process to activism began through a need to advocate for her own child, and she witnessed a similar process taking place in parents around her. As their shared personal battles extended to learning about social structures, systems and barriers, and to new skills and community, they began to understand that their personal battles had a wider relevance. But we’re also aware that our route to, and through, activism is not a one-off experience or a straight line. For Liz, years of activism were displaced by crisis. The start of focusing back outwards came through advocacy, initially and by necessity for the sake of her child and herself alone, though the knowledge of future activism lay within. Even at the greatest remove, the impulse to do something of value beyond the specific circumstances helped keep her going through the most difficult times. Despite these contrasting routes, we have both found that activism is not a single reorientation in identity or practice, but a circling back around and constant renewal. Often, it takes a different form from much of the activism around us or that we participated in before we became disabled mothers of disabled children. 163

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The different patterns of our activism In particular, we have observed the following: •

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The focus of our activist practice is predominantly localised and domestic. When personal barriers are all-consuming, it is their urgency that defines the issues in which we become immersed. Even where we would choose to look further, even though our focus does not reflect the full breadth of our concerns, which extend beyond both our children and disability, it is the urgency of the personal – the inability to manage much else without first attending – that both drives and limits our activism. Sometimes our activism stops altogether, derailed by crisis, temporarily or longer term. Sometimes it is compromised. What was often straightforward in relation to ourselves before motherhood becomes far more complex, nuanced and risky when it is on behalf of our children. We have found a greater need to live activism and pragmatism side by side: to put ourselves at risk in the name of principle is easy, but we are not so free in relation to our children. Pragmatism means we sometimes compromise politically in ways we would not have imagined for ourselves, in order to secure our child’s inclusion or wellbeing. Sometimes, we compromise personally, exposing more about our impairments than ever we usually would, in order to create alliances with professionals that might secure our children’s future. At times, what we do for our own children contradicts what we argue for through our activism. We might argue for inclusive education and, yet, in its absence, send our child to a ‘special’ school because that is the nearest to suitable education that can currently be found. Sometimes our activism is to the fore. Sometimes we (appear to) use our child for our politics, availing our own family’s experience to drive through larger change. Sometimes the only way we can fight our child’s corner is to win a larger battle; without being activist, without tackling the system, the particular barrier cannot be addressed individually. Sometimes our activism is public and direct, such as resisting cuts to crucial services, but often it is difficult to be directly, and more conventionally, activist. Much of our activist work is behind closed doors, scarcely visible and often not recognised as activist. It exists in our encounters with professionals, our exchanges with other parents, in the way we talk to our children of their lives and of our lives together. It inhabits the work of support groups and online communities, participants in consultations and complainants, social media activists and scholar-activists. It is in telling the story, like here.

For us, parenting disabled children as disabled people ourselves has brought an additional imperative to our activism. We know that marginalisation and exclusion demand urgent action, but witnessing the exclusion of our children cannot help but shift that imperative to another level. At its extreme, we witness the horrifying urgency of the Justice for Laughing Boy campaign set up on behalf of Connor Sparrowhawk by his mother, Sara Ryan (Ryan, 2017), in the aftermath of her son’s preventable death. Four months after Connor moved into an NHS-run residential unit, he was left unattended in a bath and drowned.1 It is Sara Ryan’s sustained and courageous writing, public speaking and social media work that exposed the professional arrogance and institutionalised undervaluing of disabled people, particularly with learning and developmental difficulties, that led to her child’s death and which continues to hold life-threatening consequences for other disabled children and adults. 164

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When events such as these make it apparent just how vital activism is, it is painful to have to compromise or delay our own, and yet we have realised that, even when we must, our activism remains present. It informs how we interpret, manage, negotiate and argue. We collect experience and evidence as we go, knowing that individually-experienced injustice might be used in the longer term for something larger. Knowing that our activism is still there, waiting – even that the current crisis will bring more to it when we resume – gives strength. Understanding the politics that underlie the crisis, the mechanics of social structures, brings a greater clarity to our immediate circumstances and makes them a little more manageable. Sometimes, we find our activism has been concealed at the point of doing; that, even when our energies have been locally and personally focused, we realise with hindsight that the ripples have spread beyond ourselves. We have learnt, beyond being disabled mothers of disabled kids, that activism can become woven into identity. It defines our interpretation of our circumstances – an activist politic and consciousness means forever interpreting events differently – and it links us to others in similar situations or with a similar understanding of the world. We have found that even when we are not actively activist, our ‘being in the world’ as politicised disabled mothers of disabled kids is itself activist; simply being present disrupts the system and presents other ways of being and doing. In a world that very often does not see the value of our children or ourselves, even to hold onto the pleasure that is our children and the privilege of being their mothers is political. We have come to understand that within our lives, advocacy, campaigning and activism have the potential to be all-consuming. We considered whether there should be a point at which you (let yourself ) let go? Do we turn everything to activism? Do we risk turning our kids and ourselves into objects of activism? Yet, we have discovered that, even in the most difficult times, being activist is a powerful means of keeping going. To be activist is to understand ourselves as part of a community of parents and disabled people, advocating and activating on behalf of our kids both now and for the future. There is strength, out of the most difficult circumstances, in being able to contribute beyond ourselves. Commentary on Sara Ryan’s blog, Ragged University (2017) described the scale of its reach and influence: it has over 800,000 views and nearly 400 followers; it is apparently being used in teaching health and social care students and [Sara] has an email folder of messages describing what a difference it makes to parents, carers, siblings, grandparents, people who experienced bereavement, professionals and students in their practice and learning.

Our everyday practise of activism In our everyday practice, our activism is confounded, informed and fuelled by our circumstances.

Growing up, education, and the rest Social structures are woven into the lives of children to a far greater degree than at other stages of life. From the moment of conception and through transition to adulthood, from in vitro monitoring to mandatory education, they are prominent in the day-to-day minutiae and the grand sweep of growing up, as well as in our lives as parents. Those structures, instituted through medics, educationalists, social services, and so on, wield enormous power over our children. When there is a mismatch between a child and the demands of a structure, 165

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or when additional resources are needed to meet personal needs, the tensions between the two are magnified. Our role as parents is to navigate our children through these systems as safely as possible, so that they can become, or retain, themselves. As activists, our role is to challenge and subvert those same systems; to make them inclusive of our children and others. In practice, the two roles closely entwine, often, the small changes we seek for our children ripple out to others; often, to secure our children’s future we must pursue change on a much larger scale. It is not only an enormous task, but a risky complicated one. As disabled people, and as parents of disabled kids, we are often at odds in our encounters with others, including fellow parents and the professionals we must work with to access crucial resources. As activists who base our understanding of our children’s lives and our own in the social model, we respond not only to impairment, but to its context of profound social barriers; our primary focus is to remove those barriers to our children’s participation. We find that our negotiations with professionals and conversations with other parents of disabled children are often rooted in the medical model, with its premise that our children’s impairments are tragic and the cause of their marginalisation. Beyond the immediate needs of our children, by necessity our role is to educate those around us, translating across models, questioning the assumptions about our children and ourselves, presenting our circumstances deliberately to politicise them and, ultimately, to challenge the system that has created such barriers. Obliquely or intentionally, our negotiations become activist, paving the way for families who follow. For Wendy, it was the realisation that, to secure her child’s needs, she must necessarily address the systems in which they were based, that moved her to an activist practice. Yet it is tiring and contentious consistently having to argue what a situation is before we even attempt solutions. Professionals are taught and work in a culture that typically takes a very different view from ours; they position themselves as experts on our lives (Hodge & Runswick-Cole, 2008). We find ourselves navigating a constant and complex dance between the uncompromising activist, testing their patience with what they see as our recalcitrance, and the need to win cooperation and support for the long term. Sometimes, in order to access a resource, we appear to contradict our independent stance and perform a role of the compliant parent. As disabled people and as parents of our children, we often find ourselves cast as untrusted witnesses, labelled too subjective, too emotional, too involved to see what is best for our children (Ryan & Runswick-Cole, 2009). Sometimes our own impairments or the barriers we face are used to question our judgement and ability to parent, or their relevance is disregarded; at times, our impairments have been considered as presenting ‘risk’ to our children and we have found ourselves parenting precariously for fear our children might be taken from us. The systems set up to address our children’s circumstances, such as the Education, Health and Care Plan, are typically entrenched in an individualistic framework. Often designed to be adversarial, it can be hard, as parents, to challenge without the fear of losing existing resources. Yet that experience of adverseness, and the shock at witnessing how it can be used to deny resources, can paradoxically create activists of us. Occasionally, we stumble upon a professional who understands the sense in a barriersfocused approach, and that partnership is welcomed. At times when a resolution cannot be reached, or cannot be in time for the wellbeing of our children or ourselves, our response, for both survival and activism, has been to break free of statutory support. In such circumstances, we find our activism is in being brave enough to cut adrift, in seeking solutions from ourselves or our community, and in demonstrating these other ways of living. Sometimes this can be the most liberating and radically activist of all. 166

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Challenging the position of parents in the world of disability activism from our own disabled childhoods Compared to our own parents, we arrive at our circumstances with prior knowledge. As disabled mothers, we are experienced at managing discrimination in ways that (typically) our parents were not. This brings pros and cons. We revisit our own childhood experiences, including our parents’ parenting, with glimmers of understanding into what they went through in advocating, and sometimes failing to advocate, for us. In contrast to our parents, we bring our history as disabled people to the raising of our children, encounters with professionals and navigation of the social world. That history gifts us insight and skills, but also brings prior hurts from impairment, discrimination, medical abuse, and so on. Encounters with professionals on behalf of our children can be raw, requiring us not only to manage our children’s situation, but to confront our own trauma and complicating our ability to respond effectively to immediate demands. Our experience means we already know too well what it is to be judged on our ‘fitness’; the risks implicit in professionals’ judgements about our children and ourselves as parents are palpable, but also render us better prepared to counter them. Most disabled people will recognise how hard it is to advocate for themselves and how much easier for someone else; to advocate for your own child is the hardest of all. Yet, it is our often painful insights as disabled people that inform that advocacy and fuel our activism, in order to protect our children and others from the same. Our history as disabled people is grounded in the power of an activist movement. Shared insight, vulnerabilities, tenacity, community and the experience of successful activism mean we do not fight their corner entirely alone. In knowing their mothers as part of that collective whole, our hope for our children is that they can root their sense of themselves in that same political context and use it to navigate the complexities of their circumstances. Historically, the disabled people’s movement has judged parents of disabled kids harshly. Many of us activist in the 1980s and 1990s criticised early campaigns by parents to open up a world resistant to their disabled children, via medical treatment or access provision. There are parents whose attitudes and actions have been, and continue to be, retrograde or even hazardous to their children and to the wider community of disabled people, yet some parents’ work was radical in its time, even as it is viewed with hindsight as paternalistic and retrograde. Parents of disabled children are still often met with a certain suspicion; as disabled parents of disabled children we find ourselves in a novel position: to be of the disabled people’s movement and yet seen by some as a block to it. Observed more temperately, those parents laid some of the ground for us to become activist; their early work kept us alive and began our foray into the outside world. In forging new paths, they enabled us to move on to gather resources, form community and take the battle onto a larger and more radical stage. In beginning to open the world to their children – in believing we were as entitled to it as anyone else – they opened up opportunities that enabled us subsequently to criticise the limits of their aspirations and to demand more radical change. If we too have judged those earlier parents of disabled children harshly, we have now, perhaps, learnt compassion and a more nuanced view of what they achieved for, and sometimes with, us.

Emotion shaping our activism In revisiting the role of parents of disabled children, we have found ourselves confronting the grief, anger and loss in many of their accounts, particularly by non-disabled people, of 167

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raising their disabled children. There remains a conflict between the determined focus of the disabled people’s movement on external barriers to participation and the insistence by many non-disabled parents of the tragedy of impairment. And yet, here as disabled mothers of disabled kids, we find ourselves too managing grief, anger and loss in relation to our kids. Our activism centres upon the external structures that exclude our kids, but we find, by necessity, that we must also acknowledge the impact of both discrimination and impairment on our kids; on their dreams, and our dreams for them and, indeed, upon ourselves. We grapple with making space for our sadness, not denying it as many activists would have us do. Whilst keeping the momentum of our activism, we also try to understand our loss within that context. We are learning that the two can sit side-by-side and entangle, each informing the other: our emotion brings fuel to our activism, and our activism becomes more empathic to the complexities of real life.

Up against the barriers: constraints and shifting contexts Those complexities extend to our own lives. Parenting our children in a society that excludes and confounds them is hard work, both practically and emotionally; to do so as disabled people is harder still. We face both structural barriers to parenting and the constraints of our own impairments, both of which limit the personal resources we have to work with. Sometimes, just trying to manage the just personal barriers is too much, without also trying to change them on a wider scale. Sometimes, we are too ill or overwhelmed to be actively activist, and the everyday demands and imperative for change often takes a toll on our own impairments. We wonder how many non-disabled parents of disabled children subsequently acquire impairments themselves, not because having a disabled child is intrinsically harmful, but because navigating a hostile world is. In the presence of impairment or illness, and in the absence of resources, advocacy and activism become much harder to practice, and yet more necessary. Advocating for our children, and being activist beyond our immediate concerns, takes place in the context of the rest of our lives, from managing work, social security and other caring and domestic responsibilities, to navigating additional inequalities such as racism or poverty. Austerity, with its onslaught on infrastructure and mounting hostility towards minority social groups, inflicts a need even more urgent to be activist. Yet, as we find ourselves fighting to secure or retain what we need, it is hard to resist becoming more inward-looking, since our own diminishing support reduces our ability to secure our children’s, and theirs in turn impacts upon our health. During the preparation of this chapter, Direct Payments, intended to pay for essential services, were removed in entirety from one of our children following an austerity-propelled, local authority policy change, with a severe impact on both child and family.

A reorientated activism The ebb and flow of our own capacity to act means that there are times where we must select our battles carefully or even set aside being actively activist for a time. The range of our activism – how we enact it and the issues we focus upon – may be narrower than we would choose because there is nothing left to work with, or because disability has to be our overwhelming priority, at least for now. At times, the best we can do is make breathing space within structures; not to seek fundamental change, but to make things workable in the moment. In times such as these, we ‘hold’ our kids, ourselves and our lives, and we wait. 168

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It is a necessary retreat from activism, a time for our children and ourselves to recover from battling and from the damage sustained by navigating a society that excludes and confounds. Yet to retreat is to reflect, replenish and regroup and it becomes a part of the activist whole, enabling us to reflect on our practice and teaching us about the breadth and different forms that activism can take.

Conclusion By circumstance, we often cannot be a part of more traditional practices of activism, those more direct, massed and often visibly confrontational events in public spaces. Instead, we have found ourselves reviewing and revising what activism is and recognising that, for us, it takes a reorientated or adaptable form, often to be found in the spaces between the larger expressions of activism. As we conclude this chapter, we summarise what this version of activism looks like, what it means for our children, and its relevance to wider activism. •

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It is in our conversations with professionals about our own kids, in the way that our political positioning leads the conversation; our interpretations, our demands, and the way these shift the understanding of the professional and influences their practice beyond the immediate encounter. It is in our exchanges with other parents, ‘politicising’ them and moving them towards an activist stance in relation to their own children. It is in our being present as disabled parents of disabled children in a society that doesn’t expect us. It is in a more compassionate and inclusive activism, towards ourselves and those we seek to influence. By necessity, our way of activism must fit with who we are and with our constraints, those competing demands, limited time and the day-by-day complexities of impairment and discrimination in our children and ourselves. It is in the way we raise our children and our kids’ witnessing of us as activists, and as advocates on their behalf. It is in their learning a different, more powerful, interpretation of their own circumstances.

Our children have their own experience of being disabled, of being a member of both a marginalised social group and a collective, political community, and their understanding of this grows as they do. Our role as disabled mothers is to manage that emerging identity, to communicate and understand both its unfairness and its beauty, and their impact upon psyche and development. We have the task of advocating for their space in society, whilst holding a space in which they can learn a means to answer back, and our actions and activities shift as the needs, wishes and understandings of our kids develop and change. We have taught our kids to interpret the world around them through the social model of disability and a sense of agency. We do not ‘require’ them to become activists, yet as we watch them grow we recognise their strong sense of themselves, which is itself to be activist. We are seeing them develop intentionally into advocates and activists, and we understand that this too is a part of our activism. It seems almost inevitable now that they will decide to become the next generation of activists, to carve out a version that is their own, and we watch in awe as they learn and teach us in return. Our kids are becoming autonomous as they grow, developing the capability to take on more battles for themselves, to decide their priorities and take the lead. When they are small, we are the agents of their inclusion; as they grow up, part of our parenting of them, and part of our activism, is to guide them in their own agency. Yet to continue to be available to them is vital, to lighten the load of battling, of needing to be activist when so many of their peers do not. 169

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In this chapter, we have sought to highlight what our circumstances as disabled mothers of disabled children have meant for our activism. We have found that, despite myriad obstacles, we remain activist, but our practice has shifted; often, it is more nuanced and serendipitous, entwined with the relationship between our kids and ourselves, and arising in spaces where we might not have recognised it before. There is as great a need as ever for activism by disabled people, and that includes those of us who are parents or children. For our greatest critical mass, we need to learn to identify, practice and extend activism in its many forms. The activism that has emerged for us through being disabled mothers of disabled children holds a power and utility that we urge others to recognise and make use of and, in doing so, to acknowledge our experiences and the enduring activism that we carry out for our kids, ourselves, for other families, and for those of you beyond.

Note 1 A social media campaign started was called Justice for Laughing Boy (#justiceforLB) and can be found online at: http://justiceforlb.org/who-is-lb/. Sara Ryan’s blog called ‘My daft life’ can be found online at: https://mydaftlife.com/.

References Goodley, D. (2014). Dis/ability Studies: Theorising Disablism and Ableism. London: Routledge. Hodge, N., & Runswick-Cole, K. (2008). Problematising parent–professional partnerships in education. Disability & Society 23(6), 637–647. Ragged University. (2017). Sara Ryan keynote: what the fuckwhatery? Disability studies, activism and the continuing denial of the human. 28 March 2017. [Podcast]. Retrieved from https://www.raggeduniversity.co.uk/2017/03/28/podcast-sara-ryan-keynote-what-the-fuckwhatery-disabilitystudies-activism-and-the-continuing-denial-of-the-human/ on 25 November 2018. Ryan, S., & Runswick-Cole, K. (2009). From advocate to activist? Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities 22(1), 43–53. Ryan, S. (2017). Justice for Laughing Boy: Connor Sparrowhawk – a Death by Indifference. London and Philadelphia: Jessica Kingsley Publishers.

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11 DEMENTIA AS A DISABILITY Kate Swaffer, Brian LeBlanc and Peter Mittler

Introduction: a global overview Worldwide, there are an estimated 50 million people living with dementia (WHO, 2017a). In developed counties, often up to 50% of these people are not formally diagnosed. In the low and middle-income countries (LMICs), this formal diagnosis figure is often much lower than in developed countries (WHO, 2015). There is one new diagnosis globally every 3.2 seconds (WHO, 2015) and of the more than 130 types or causes of dementia, Alzheimer’s disease makes up 50–70% of all dementias. Almost all dementias are a terminal, progressive chronic illness (WHO, 2015). There is still no cure, although there are some treatments for some types of Alzheimer’s disease, which may slow down the symptoms, but are not disease modifying. It has become very clear the medical model of care is no longer appropriate for early stage dementia. The WHO (2017) views dementia as one of the major causes of dependency among older people. However, currently, we are not aware of any clinicians providing disAbility assessment, support and services to people diagnosed with dementia. Within the WHO Global Action Plan for a Public Health Approach to Dementia, adopted unanimously at the World Health Assembly in Geneva in May 2017, human rights, empowerment and accountability are characterised as three cross-cutting principles. Now, 11 years after the adoption of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006) by the UN General Assembly, these principles cannot be realised without full commitment to the General Principles, Articles and Optional Protocol. Of the many countries who have ratified the CRPD, none have yet implemented it for people with dementia, nor considered the WHO’s Global Disability and Development Action Plan (WHO, 2015). The WHO revised Guidelines for Community-Based Rehabilitation (CBR) (WHO, 2010) and its new Quality Rights Indicators for Mental Health (QRIMH) (including dementia) should be considered in all plans for dementia, as well as when planning for full access to all rights (WHO, 2012). In Box 11.1, Peter Mittler, one of the authors of this chapter, unpacks disability rights in relation to the CRPD and dementia.

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Box 11.1: Peter Mittler’s unpacking of disability rights The CRPD calls for solutions adapted to age, gender, ethnicity and locality that can be addressed through the General Principles and Articles (UN, 2006). The 38 cross-cutting Articles offer key common elements including: capacity, supported decision-making and the protection of the fundamental human rights first set out in the UN Universal Declaration of Human Rights in 1948. Articles 8 (Awareness) and 9 (Accessibility) are addressed in an increasing number of countries by Dementia-Friendly Communities and organisations which facilitate access to transport, shops and community amenities. Article 30 (Participation in Cultural Life, Recreation and Sport) is reflected in numerous local and on-line peer support groups, dementia cafes and on-line seminars with world leaders in research and policy development. Other Articles profoundly affect the ability of people in the early to moderate stages of dementia to remain active in the community and continue to pursue their interests, while Articles 14, 16 and 23 promote a good quality of life for people in the later stage of dementia. In a number of low and middle-income countries there have been recent examples of torture, being chained or burned alive following accusations of witchcraft, as well as evidence of chemical and physical restraint. In many higher income countries, current austerity policies are forcing increasing numbers of people to face hunger or to resort to food banks. Article 28 is explicitly about how we need to have adequate standards of living and social protections wherever we live. In 2015, the UN launched ‘17 Sustainable Development Goals for 2030’ with a commitment to ‘Leave No One Behind’. They include Good Health and Well-Being, Poverty and Hunger, Quality Education, Gender Equality and Action on Climate Change. The disability movement has worked hard to ensure that governments are held to account for making progress to translate these aims into reality but there is already evidence that those with mental health issues and dementia are already being left behind (Peter Mittler).

This chapter highlights the importance of mainstreaming or including rights into policy and practice for dementia, and offers insights into why people with dementia must be seen and accorded the same rights as all other people with disabilities. The authors of this chapter are three of the more than 50 million people in the world estimated to be living with dementia (WHO, 2017). We, along with many others with dementia, are individually and collectively demanding a human rights-based approach to dementia (Shakespeare et al., 2017), which includes rehabilitation and proactive disAbility support.

Understanding dementia The Mayo Clinic (2018) argues that dementia is not really a disease, but it encapsulates several symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. A feature of dementia is typically loss of memory, but some loss is normal as people age. Dementia is where that loss is more serious and progressive and it begins to affect every aspect of life. Dementia includes cognitive changes, sometimes psychological or personality changes, including memory loss, which is often noticed by a spouse or someone else, difficulty communicating or finding words, difficulty with reasoning or problem-solving, and difficulty with complex tasks, planning and organising. It can also 172

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cause difficulty with coordination, motor functions, confusion and disorientation. Other changes can be to a person’s mood, anxiety and personality. Some types of dementias cause problems such as hallucinations. The difference between normal ageing and dementia is the extent of the memory and thinking difficulties and how they interfere with the person’s day-to-day life. This is also what makes it especially difficult to distinguish normal ageing from the early signs of most dementias, and why doctors are hesitant to give a diagnosis, especially to a young person. Technically, they cannot be 100% certain it is dementia until a brain autopsy. Before giving a person a diagnosis of dementia, doctors will rule out the other approximately 100 conditions that can also cause cognitive changes in a person, such as Post Traumatic Stress D ­ isorder (PTSD), depression, thyroid conditions, urinary tract infections or delirium (Swaffer, 2014b). Whilst there are more than 130 different types of dementia, Alzheimer’s disease is the most common, followed by vascular dementia. The above perspective is from a medically biased lens, and there are other ways to define dementia. Swaffer (2014b, p. 15) defines dementia as ‘a condition causing acquired and progressive cognitive and sensory disabilities’ but with support focused on assets not deficits, as well as reablement, many people with dementia will maintain independence for as long as possible. This perspective is a more encompassing one that advocates quality of life and independence for longer, reducing economic cost of dementia to the person diagnosed, their family, civil society, and also governments. Figures 11.1 and 11.2 below are from Swaffer (2016, p. 15; 17). They explain in simple visuals the real complexity of what dementia is.

Figure 11.1  The brain from Swaffer & Low (2016, p. 15).

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Figure 11.2  The dimentia umbrella from Swaffer & Low (2016, p. 17).

Dementia as a global issue Today, dementia is one of the ‘hot topics’ in the global academic, health care and service provider communities, and there is big money in dementia. Accordingly, many people and organisations around the world have suddenly become very interested in writing and publishing about dementia as a disAbility, or providing services to this cohort. Dementia advocates have been talking about inclusion, and then dementia as impairment deserving of rehabilitation for a long time, and it is therefore important to review some of the history of this advocacy. When Swaffer was first diagnosed with young-onset dementia aged 49 in 2008, she was told by the health care and service provider sector to, ‘Go home, give up work, give up study, get my end of life affairs in order, and get acquainted with aged care’ (Swaffer, 2016). She ultimately termed this as, ‘Prescribed Disengagement ®’, trademarked it, and has written on it extensively (Swaffer, 2014a,b; 2015a). There is a significant amount of anthropological and anecdotal evidence that this is still happening to people newly diagnosed and the cost of this is a sense of hopelessness for those diagnosed and their families. The person with dementia can feel victimised, disabled and disempowered. It also promotes ‘learned helplessness’ in those diagnosed. Care partners or families feel ‘burdened’, and too often may assume all the power and control, further disabling the person with dementia (Swaffer, 2014; 2015a). Low et al. (2018) illustrate that there is still a lot of work to do to communicate a diagnosis of dementia and this needs to be improve. We were seen as patients instead of advocates for ourselves and experts of our own conditions with rights. In order for this to change, we had to become global advocates. 174

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Pioneer advocates such as James McKillop, Carole Mulliken, Jeanne Lee, Christine Bryden and the late Peter Ashley were aware of these issues but initially still used the discourse of ‘suffering’. What they were demanding, although not using the language of rights, was inclusion provided for in Article 19 of the CRPD (UN, 2006). This has changed significantly, as most people diagnosed now want proactive support to live with dementia. At the 2012 Alzheimer’s Disease International (ADI) conference in London, the late Dr Richard Taylor, Agnes Houston, Helga Rohra, Kate Swaffer and others started communicating online about making their advocacy efforts more global and collaborative, and more effective by writing about it in blogs and books. This is where Dementia Alliance International (DAI), the global organisation was born. DAI is an advocacy and support group of, by and for people with dementia, and is seen as ‘the global voice of dementia’, currently representing 48 countries. DAI’s vision is: ‘A world where people with dementia are valued and included’. DAI started intuitively, after many years of discussions with organisations and then people diagnosed with dementia, and is still for the purpose of self-advocacy. DAI was also making demands for the symptoms to be managed as acquired cognitive impairments with rehabilitation and other proactive psychosocial (non-pharmacological) interventions, which have recently become popular. However, back then, presentations about this topic were virtually scorned. The year 2012 also marked the publication of the report Dementia: a public health priority, which provided an authoritative overview of the impact of dementia worldwide and links to disability (WHO & ADI, 2012). In addition to valuable best practices and practical case studies from around the world, it contained the most comprehensive collection of data, including hard-to-get statistics from low- and middle-income countries where dementia had been neglected (WHO & ADI, 2012). WHO and ADI (2012) were committed to making dementia a global health priority by calling on national governments to address the increasing challenges it posed on global, regional, national and local levels. In 2015, ADI published The World Alzheimer Report 2015, The global impact of dementia: an analysis of prevalence, incidence, cost and trends, which updates ADI’s global dementia data (ADI, 2015). By carrying out a full update of previous systematic reviews, the report made key recommendations to provide a global framework for action on dementia (ADI, 2015). Whilst building up the momentum, this focus on global impact, data and prevalence did little to highlight the real needs of those of us living with dementia, nor did it help the health care sector move away from the medicalisation of dementia to a more social one, with disability support and ensuring rights (Mittler 2016a; 2016b). On the 16th and 17th of March 2015, the WHO First Ministerial Conference on Global Action against Dementia was convened. This conference advanced awareness of the public health and economic challenges presented by dementia, provided a better understanding of the roles and responsibilities of Member States and stakeholders, and led to a ‘Call for Action’ supported by the conference participants. Included were the three demands DAI made at this conference: (i) That we have human rights to a more ethical pathway of care; (ii) Being treated with the same human rights as everyone else, under the Disability Discrimination Acts and United Nations Convention on the Rights of Persons with Disabilities; (iii) That research does not only focus on a cure, but on our pre and post-diagnostic care and on pre and post interventions including rehabilitation. (Swaffer, 2015b) In these ways, dementia as a global issue was marked by a turn to human rights language and DAI published its first publication on human rights, The human rights of people living with 175

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dementia: from rhetoric to reality (DAI, 2016). The ADI International conference in Budapest in 2016 made human rights a key focus in its plenary sessions, and also hosted a workshop on the topic. With the implementation of the United Nations Sustainable Development Goals (SDGs), DAI and ADI then published a co-authored position paper in 2016, entitled Access to CRPD and SDGs by persons with dementia (ADI & DAI, 2016) to support ADI members to engage with those rights frameworks. DAI also presented a video on Community Based Rehabilitation (CBR). This was a presentation on how older people could engage with CBR as dementia and disability were becoming interlinked (Mittler, 2016a). In 2016, the WHO then led a Draft global action plan on the public health response to dementia, with major consultations from all stakeholders globally, including DAI and others with dementia. The WHO Global Action Plan on the Public Health Response to Dementia 2017–2025 is now also being developed into action plans on disability too (WHO, 2017b). Regardless of dementia falling within the definition of ‘disability’ within domestic and international law, globally people with dementia continue to face a number of challenges to have their rights respected (Mittler, 2015: Shakespeare et al., 2017). Often, stakeholders and policy makers do not even see the need for a rights-based approach to dementia. This is partly due to the fact that symptoms of dementia are often ‘hidden’ or ‘invisible’ disabilities, until progression into late stage. The public misperception of people with dementia is that we are old, in late stage upon diagnosis, and unable to function well, if at all. It is certainly not yet seen as the norm for people with dementia to be living positively and who can advocate for their rights (Mittler, 2015; 2016a; 2016b). Focusing on the symptoms of dementia as acquired impairments, in the same way, as we would if someone had impairments after a stroke or head injury, is the future; and thus a human rights approach is needed involving the CRPD (Swaffer, 2016, p. 51, p.160; Shakespeare et al., 2017). The global dementia-friendly community campaigns have had some positive impact on raising awareness, but still miss the point of full rights of access to community and health care.

From dementia advocate to activist In this section, I, Kate Swaffer, share my personal story of being diagnosed with young onset dementia. It also outlines some of my achievements, as I’ve been writing and speaking about dementia since 2009, and have won many awards for my work in dementia. In 2015, I was the inaugural winner of the International Dementia Leader award at Stirling University, and the winner of the National Disability Award in Australia as one of two emerging leaders in disAbility awareness. In 2016, I won the Social Impact award at the University of Wollongong for my global work in dementia. After winning another prestigious award in Australia in 2017, I was quoted as saying that my life’s work now was to, ‘empower people to live with dementia, not only die from it’, and yet, still, too often, I am publicly referred to only as a ‘sufferer of dementia’, or worse, publicly accused of not looking like I have dementia. My most important work is my role in DAI, which directly connects and supports people with dementia through online support groups, cafes and educational webinars around the world, to advocate for more positive and connected lives. Helping others to see that they can live with dementia, and do not only have to go home and hide, while they wait to die from it, is my main drive. I do feel that I have been very outspoken about the public discourse on dementia, and our disability rights, including the campaign for inclusion of rehabilitation for people with dementia. Although I have probably been too direct on most occasions, it is helping to create the much-needed change; an invisible condition to one with the same rights as any other person with acquired impairments. 176

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My first book, What the hell happened to my brain?: living beyond dementia (Swaffer, 2016) took me almost three years to write. I spoke about the topics that were important to me then, and how I would like to see major changes, including seeing dementia symptoms as disAbilities. When first diagnosed, I took the advice of the well-meaning health care sector and service providers and actively prepared for end of life (Swaffer, 2015a). However, luckily, I was a mature age university student and the lecturers there referred me to their disability services in 2009, in the same way they would have if it had been a younger student with sight impairment or a learning disability like dyslexia. Although shocked at first to acquire what I first thought was just another negative label starting with D, it soon made me realise I had rights. The disAbility support team assessed my strengths and disAbilities and devised strategies for me to continue living (Swaffer, 2014a). It looks simple to me now, but I believe the other ‘sectors’ in the world are still struggling with the disability concept and how it links to dementia. In my second book which I co-wrote with Lee-Fay Low called Diagnosed with Alzheimer’s or another dementia: What’s next? (Swaffer & Low, 2016), we ran focus groups and interviewed many people with dementia. One of the overwhelming messages was a desire for services and support embedded with human rights and a ‘one-stop shop’ about dementia. This is something I had wanted too when first diagnosed, instead of a website and a lot or loose (and easy to lose) ‘Help sheets’ that were primarily medical in nature. Earlier in this chapter, the medical definition of dementia was noted but there are other ways of defining dementia, which are also far less likely to cause stigma and discrimination. John Sandblom, one of DAI’s co-founders, wrote: We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us! (Sandblom, 2014: para 3) The way I define dementia now is: ‘Dementia is a group of syndromes or condition where the symptoms must be seen and supported as cognitive disAbilities.’ (Swaffer, 2014; 2015a; 2015b; 2016a; 2016b). I turn to some of the support that we need in what follows.

Advocacy and activism by the dementia ‘experts’ Persons with dementia have published books, write regular blogs and articles, and are invited speakers at events and conferences around the world as well as being family members, parents and grandparents and contributing to our communities in differing ways. Many of us are also on advisory and expert working groups and are very active advocates, and often wonder how we ever had time for paid work. Our contribution is currently mostly still unfunded, despite its significance. Perhaps it is due to what I call passive stigma within the very sector who say they advocate for us, which prevents others from seeing our value enough to pay for our time and expertise, and for the benefits to them or their organisations of our advocacy and activism. The misperceptions and myths of dementia regularly mean that those diagnosed often have great difficulty in protecting their own rights, or of the rights of the person they are supporting with dementia. Society in general has not seen nor is used to people with dementia being capable of having a voice or being experts. They have been shut away and forgotten in society, until quite recently. The lack of general awareness of dementia and the lack of adequate dementia education in the health care sector is an issue of human rights. As such, 177

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stigma, isolation and discrimination against people with dementia is predominantly still a large feature of their lived experience, as they/their care partners and families often report feeling that they are treated with less respect, less dignity and less compassion than other members of society. People diagnosed and living with dementia are the experts of their lived experience. When diagnosed early enough, we are therefore also the experts of our needs. It is a human right that everyone, including people with dementia, benefit from best practice, and receive best care, full inclusion and disAbility support. However, and for too long, best practice, best care, and full inclusion have not been the norm, and rather it continues to be, ‘about us, without us’. Currently, almost no one is yet receiving a pathway of support that includes assessment and strategies to support our disAbilities, and treatment that includes things like acquired brain injury style rehabilitation and speech pathology. When our founding members were each diagnosed with dementia, they individually experienced a loss of self and many members say they still experience this for the first weeks, months or even years after a diagnosis. Collectively, we at DAI realised we had to struggle with multiple challenges: not only medical, but also many based on social stigma and discrimination, related to changes to our cognitive ability. We began to articulate the unfair, hurtful, and de-humanising injustices imposed upon people with dementia. The task of speaking out against people causing us harm is complicated (and sometimes precluded) by the fact that many of them are wellintentioned, medical staff, service providers, advocacy organisations and close friends or family members who are also often our care partners, but who may be ignorant, unwilling or unable to take the time to find out about our wishes and needs. Although we are grateful for the support of family and friends, we have sometimes been demonised for needing them. We have also been demonised for not needing them, and for daring to live positively with dementia. People with dementia historically are written about as if we ‘suffer’ from it; and are labelled a ‘burden’ to society and have been labelled with all manner of other disrespectful terms. What we suffer from is the dehumanising language many use to refer to us, and we experience the worst care globally. Members of DAI therefore believe it is imperative to change misperceptions about dementia, address stigmas associated with it, discourage the detrimental psychological and physical abuse of people with any disAbility, and demand that the voices of people with dementia be included in all decisions directly affecting them. The misguided under-estimations of our potential continue to create oppressive and humiliating barriers to our full engagement in society. Some of us have even been publicly accused of faking dementia, on the grounds that no one with dementia could address an audience of professionals at an academic or medical conference, or lead positive and productive lives. Perhaps the worst myth we experience is that others expect that people with dementia will go from diagnosis immediately to end stage dementia. This myth is endemic. Overall, ‘There is a systemic and gross underestimation of the capacities of all people with dementia, even in the later stages’ (Swaffer, 2014a). Members of DAI and people with dementia around the world are systematically proving this to be untrue. We have begun to individually and collectively advocate and educate more enthusiastically, locally, nationally and internationally, at professional conferences, and in the vast online communities we have built. Many people with dementia are very dedicated to empowering all people to live a better life with dementia, and not just to die from it, and are demanding the basic human rights for access to health care and disAbility support in the same way as all others living with a disAbility or illness. In this way we have begun multi-issue advocacy. 178

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We advocate for our rights of equal and full inclusion in public spaces and activities; we educate the public on our humanity in the face of cognitive disAbilities, so that we are not reduced in legal or social status. We seek to live well ( just as all people do – that’s the point), to be valued for who we still are, and to be included as equal citizens. Our global focus has been on human rights and disAbility rights, and we continue to work with international and national organisations to assure these goals. This is why we continue to advocate at the grass roots level, and have become activists in the global space, for better care, to ensure dementia no longer receives the worst care of any disease in the developed world, or indeed, anywhere in the world.

Box 11.2: You think I’m faking it? Imagine my amazement when, through recent conversations with close acquaintances, I was told there are individuals, some of whom in my own family, who think that I am FAKING my Alzheimer’s disease. Firstly, how in the hell does a person fake Alzheimer’s disease or another dementia??? I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner? I’ve been diagnosed, not once, not twice, not thrice, but four times. Once by a Neurologist, once by a Neuropsychiatrist, and twice by two Neuropsychologists (appointed by the Social Security Administration, who by the way, decline benefits until no stone is left unturned). Did I fake not remembering how to draw a clock or another type of shape? Did I fake not remembering the four words I was told five minutes ago? Do I fake every day not remembering things from one minute, one hour or one day ago? If I were faking all this, I must be pretty good at it to have come up with this diabolical plan. If I were faking this, wouldn’t that take someone who can think clearly, remember what to do, day in and day out, so they could remember to keep ‘faking it’? If I were faking this, would I have to be reminded each and every day what day it is? to eat? to take a bath? In addition to Alzheimer’s Disease, I have Type II Diabetes and heart disease (three heart attacks, two stents). I mention these two diseases since they are dementia-related. Along with the genetics from my great-grandmother, maternal grandfather and mother, (all who died with Alzheimer’s) and my father (who died with vascular dementia) and he, along with my mother, passed along to me two copies of the ApoE4 protein, the chances of me NOT developing Alzheimer’s were pretty slim. Even with all that, I’m faking it? I’ve also had about a dozen surgeries in my life, yet none of these issues EVER came into question from anyone. No one ever said to me, ‘You don’t look like you have Diabetes’ or ‘You don’t look like you’ve had 3 heart attacks’ or ‘You don’t look like you’ve had that many surgeries’.

Why the accusations of faking dementia? What makes this whole scenario worse are my conversations with other individuals, who are also living with a dementia-related illness, and who have also been accused of FAKING their dementia-related illnesses. It breaks my heart that so many other people have gone through this. Look, I get it… I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember too much about my life. God forbid should I be able to write blog posts and articles that will hopefully bring awareness and

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education to people who don’t understand the ins and outs of living with Alzheimer’s disease. I also get that they only saw their elderly parents, grandparents and other relatives in the late stages of the disease. I don’t try to make it sound any other way than what it actually is. When someone breaks their arm or leg, they get a cast. If someone cuts himself or herself, they get a bandage. If someone has surgeries, they have scars. Alzheimer’s or any other form of dementia is invisible, usually for a long time if diagnosed early enough. It can’t really be seen, however, it can be seen through our unsteady actions, through the way we sometimes stutter while trying to find our words, or, during conversations when we start repeating ourselves. Then, if they’re paying attention, they know something isn’t right. When I first started advocating, I actually talked about Alzheimer’s being invisible. I told my audience, ‘it would be easier if we all dressed in purple and had a cool-looking cape with a big A on it. Besides looking “hero-ish”, people would then know we have Alzheimer’s.’ I guess what I’m trying to say is, you can’t control what other people think or what other people say. When it comes to Alzheimer’s or other dementia-related illnesses, there is so much that is unknown, people don’t know how to react.

A multiplicity of dementia experiences Brain LeBlanc writes candidly about the impact of the invisibility of our impairments, and therefore of having dementia. Brian is 57 years old and was diagnosed in October of 2014 with Alzheimer’s disease. He now spends his time advocating in person as an IDA member, speaker as well as writing and blogging about his experiences. We have permission to reprint this expert from his blog.

Conclusion For those of us who are diagnosed with any type of dementia including Alzheimer’s disease, the impact of this is neither hidden nor invisible to the person and those close to them. Achieving change in this area, whether this is providing guidance that supports people with dementia to do simple things like vote, having their rights recognised to be supported to stay at work, or be more involved in their own end of life care planning, even in the later stages of dementia through the use of decision making tools, will change the landscape for us all. What we most need, is support that empowers people with dementia to maintain their independence, enables them to remain active in their communities, and offers them justifiably necessary disability support and services. The medical model of care is no longer appropriate, as it is outdated and based on late stage dementia, and promotes dependence. We cannot live positively with this pathway, and society cannot afford the dependence it ensures, first on families then the health care system and ultimately, on governments. It must be replaced by the social model of disability support. We ask for a new way of viewing dementia, and support that includes immediate disAbility assessment and support to promote independence (not just our Activities of Daily Living ADLs), and brain injury style cognitive and physical rehabilitation. Recommended life style changes that focus on improving health, as is suggested for any other chronic disease. We ask those supporting us to focus on supporting our remaining abilities, not only seeing our deficits, and support our disAbilities to allow us to continue living as positively as possible. With support, our pre-dementia life and access to our rights in all sectors of government would be a reality. 180

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It is imperative that the rhetoric of dementia being a disease or condition that is the leading cause of disability in older persons be supported by action and support strategies that promote quality of life and independence. Such support should include full access to adequate health care and rehabilitation. We demand support to live with, not only die, from dementia. With and without dementia, we are all born with a death sentence. There is no need for a diagnosis of dementia to be seen as the catalyst to give up living, and only go home and wait for that to happen, like so many people with dementia are still being advised to do.

References Alzheimer’s Disease International (ADI) & Dementia Alliance International (DAI). (2016). Access to CRPD and SDGs By Persons With Dementia. London: ADI. Alzheimer’s Disease International (ADI). (2015). World Alzheimer Report 2015: The Global Impact of Dementia. An analysis of prevalence, incidence, cost and trends. London: ADI. Dementia Alliance International (DAI). (2016). The Human Rights of People Living with Dementia: from Rhetoric to Reality. London: ADI. Low, L. F., McGrath, M., Swaffer, K., & Brodaty, H. (2018). Communicating a diagnosis of dementia: a systematic mixed studies review of attitudes and practices of health practitioners. Dementia, DOI: 10.1177/1471301218761911. Mayo Clinic. (2018). Dementia. Retrieved from https://www.mayoclinic.org/diseases-conditions/ dementia/symptoms-causes/syc-20352013 on 31 September 2018. Mittler, P. (2016a). Extending CBR to older persons’ At Global Imperative CBR World Congress, Kuala Lumpur, Malaysia. September 27 to 29, 2016. Mittler, P. (2016b). ‘The United Nations Convention on the Rights of Persons with Disabilities: What does it have to offer people with dementia’, Health Policy Plenary. Annual conference Alzheimer’s disease International, Budapest, April 2016. Mittler, P. (2015). The UN Convention on the rights of persons with disabilities: implementing a paradigm shift. Journal of Policy and Practice in Intellectual Disabilities 12(2), 79–89. Sandblom, J. (2014). ADI 2014 What an experience. Retrieved from http://www.earlyonsetatypicalalzheimers.com/blog/archives/05-2014 on 31 September 2018. Shakespeare, T., Zeilig, H., & Mittler, P. (2017). Rights in mind: thinking differently about dementia and disability. Dementia, DOI: 10.1177/1471301217701506. Swaffer, K. (2015a). Dementia and Prescribed Disengagement™. Dementia 14, 3–6. Swaffer, K. (2015b). Keynote at WHO ‘The First Who Ministerial Conference On Dementia’, 16 to 17 March 2015, Geneva, Switzerland. Swaffer, K. (2014a). Reinvesting in life is the best prescription, Australian Journal of Dementia Care 3(6), 31–32. Swaffer, K. (2014b). Dementia: stigma, language, and dementia-friendly, Dementia: The International Journal of Social Research and Practice 13(6), 709–716. Swaffer, K. (2016). What the Hell Happened to my Brain?: Living Beyond Dementia. London: Jessica Kingsley Publishers. Swaffer, K., & Low, L. F. (2016). Diagnosed with Alzheimers or other Dementia: What’s Next? London & Sydney: New Holland Publishers. United Nations (UN). (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations. World Health Organisation (WHO) and Alzheimer’s Disease International (ADI). (2012). Dementia: A public health priority. Geneva: WHO. World Health Organisation (WHO). (2010). Community Based Rehabilitation. CBR Guidelines. Geneva: WHO. World Health Organisation (WHO). (2012). WHO Quality Rights Toolkit. Geneva: WHO. World Health Organisation (WHO). (2015). WHO global disability action plan 2014–2021. Better health for all people with disability. Geneva: WHO. World Health Organisation (WHO). (2017a). Dementia: Fact sheets. Retrieved from http://www.who. int/mediacentre/factsheets/fs362/en/ on 31 September 2018. World Health Organisation (WHO). (2017b). Global action plan on the public health response to dementia 2017–2025. Geneva: WHO.

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12 VOICES FROM SURVIVORS OF FORCED STERILISATIONS IN JAPAN Eugenics Protection Law 1948–1996 Nagase Osamu Introduction It took courageous individuals and a devoted team of lawyers to change Japanese national awareness regarding the forced sterilisations executed under the Eugenics Protection Law that was enacted from 1948 to 1996. Before the first court case in January 2018, few people outside of the disability community were aware of and paid much attention to this serious human rights violation, that made more than 16,500 persons ‘sterilised’ without their consent. However, the landscape has changed, thanks to their audacity. A number of survivors of sterilisations have come forward and sued the government. The first court case also has galvanised the media into action and massive reporting on this issue. Their voices have reached the political space. Now the government is considering apology and compensation. This brief chapter does not go into the historic background of eugenics in Japan, but focuses on the voices of those who have made these changes through social action, including strategic litigations, asking for apology and compensation for survivors.1

Ground-breaking strategic litigation A survivor of the sterilisation, a woman with intellectual disability, sued the state of Japan on 30 January 2018, asking for reparations for the amount of 33 million Japanese Yen (roughly 300,000 Euro). This was the first time a person who was sterilised without consent under the Eugenics Protection Law took the government to court. This could become another strategic litigation leading to the official apology and compensation, promoting disability rights.2 According to the petition submitted to the Sendai Local Court in Miyagi Prefecture on behalf of the plaintiff, the plaintiff, who remained anonymous, was born in Miyagi Prefecture, northeastern part of Japan (Niisato et al., 2018; Kuwabara, 2018; McCurry, 2018). When she was 15 years old, she was forced to be sterilised based on Article 4 of the Eugenics Protection Law, as she was considered ‘hereditary mentally retarded’, according to the petition. She was born in 1957 and was found to have an IQ level of 39 and diagnosed ‘mentally retarded’ in 1964. On 12 December 1972, she was sterilised at a public hospital but does not remember her sterilisation. Both her parents, who must have known the details of the operation, passed 182

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away. The public record, the Prefectural Record, that was disclosed on 26 July 2017, showed that based on the medical diagnosis which found her to be ‘mentally retarded’ (sic), the medical doctor had to apply for the examination to the review board that determined if the sterilisation was needed or not. This historic lawsuit was initiated by a family member, whose sister-in-law was a survivor. The family member’s pseudonym is Sato Michiko. 3 Box 12.1 is the testimony by Sato Michiko, who shared her story at a meeting on 28 July 2018, which I have translated into English.4

Box 12.1: Sato Michiko’s testimony I am a sister-in-law of the plaintiff, who has sued the state for damages caused by the former Eugenics Protection Law on 30 January 2018. My husband’s sister (Yumi) is a person with intellectual disabilities. My sister-in-law, Yumi, was forced to undergo sterilisation in December 1972, when she was 15 years old, and a junior high school third grader. The reason for the application for the surgery was that she had ‘hereditary mental retardation’. Her intellectual disability was an after-effect of anesthesia at the time of another surgery performed about one year after birth. For the purpose of ‘preventing birth of inferior descendants’, even though it was not hereditary, she had to be forcedly sterilised even though it was not due to ‘hereditary mental retardation’. I think that this fact is the biggest mistake of the former eugenic protection law … For the local administration at that time, it (sterilisation) was legitimate based on the Eugenic Protection Law. It was half a century ago and people had to absolutely follow the instructions from the government. I do not think my mother-in-law, too, was really convinced. When she told me about this, she was feeling sorry … When I was 19 and married my husband, my sister-in-law had left his home and lived in a school for disabled children. She came home, and we have been living together for 37 years. My sister-in-law is 61 years old now and our age difference is one year. When my children were small, she took good care of them. They also loved my sister-in-law. In response to the recommendations of the United Nations (UN) Committee on the Elimination of Discrimination against Women (CEDAW) in March 2016, officials of the Ministry of Health, Labour and Welfare interviewed me three times, as promised by the Minister for Health, Labor and Welfare at the parliament, in the fall of 2017. The interviews were for the officials of the Ministry to listen to survivors. Assistant section chief of the maternal and child health section, who was in charge said the same thing three times, that: ‘It (sterilisation) was executed legally following strict procedures and there is no plan to investigate.’ If it had been lawful and legal to sterilise a 15-year-old child, the law itself must have been a problem … Also, I have three children, my eldest son, my second son and a daughter. My sons are supportive of the court case and we talk about it. My daughter, however, was opposed to the trial, and said that: ‘Yumi has had a hard time so far, it will be tough with the lawsuit. Yumi lives in comfort now. I wish it could be easier for her as she ages from now.’ So, I said, ‘What if I die before Yumi?’ Then my daughter said harshly, ‘We three siblings take care of her, so you do not have to worry about anything.’ She did not agree with the trial. We did not get in touch with each other for a while, but I wanted my daughter to understand, as a woman and mother, that my sister-in-law had her body operated on, even though she was not sick, at the age of 15, and that mother-in-law had to live with that. Last month

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my daughter told me, ‘After all it was not right. My aunty did not have to undergo a surgery. I understood what you said. Yumi often told me that she had a stomachache.’ I was relieved to hear this. I really wanted my daughter to understand. In fact, my daughter was keeping herself up-to-date by following media reports on the Eugenics Protection Law. We need a society in which people with disabilities can be themselves with individual characters accepted and have the choice to have children, can decide to have or not to have children. Two years ago, there was the Tsukui Yamayuri En Incident, which embodied ablest and eugenic ideology.5 Forced sterilisation surgery is not something that happened in the past …

As seen in Box 12.1, in the case of this crucial first appeal, the role of family, namely the sister-in-law of the survivor, was vital. Without her determination to get justice for her sister-­in-law, the door for the legal process would not have opened. Even though her family, the daughter, at least initially did not support the court procedure, Sato Michiko went ahead and there was a huge difference.

Voices from survivors of sterilisations The following are the voices of those who have survived involuntary sterilisations under the Eugenics Protection Law and sued the government. These four individuals made these statements at a meeting held on 6 June 2018 at the Members Office Building for House of Councillors.6 A female survivor from Miyagi Prefecture, Iizuka Junko (pseudonym), had this to say in Box 12.2.

Box 12.2: Iizuka Junko’s testimony Although I went to a school until the first year of junior high school, I was taken to Komatsushima Gakuen for people with mental retardation when I was in the third year and after graduation, I was sent to my job parent. After that, I was abused by my job parents. Even now I have not fully recovered from the psychological scars I suffered then. It was at the age of sixteen when I was subjected to eugenic surgery. My job parent took me to the clinic attached to the Central Eugenics Protection Consultation Office of Miyagi Prefecture, without explaining anything to me. There was a wooden bench under the bridge on the way to the clinic, but she gave me rice balls and took me to the clinic. At the clinic, I found my father. Community volunteers and job parents pressured my father to agree to my surgery and he did. My father wrote in a letter later that the Eugenics Protection Law ‘got’ him. After the surgery, my father took me home, but my job parent claimed that I just ran away. Also, my parents told me that, ‘You cannot have children physically.’ My suffering began then. When I talked about the eugenic surgery to my current husband, he left me. My life has changed by receiving the sterilisation surgery. I thought about why I should have received such treatment, sterilisation surgery, wanting to know all about what the Eugenic Protection Law was, I made a request for information disclosure to Miyagi Prefecture and others

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from around 1997. But they answered that the record was abandoned only for the year when I was sterilised. On 23 June 2015, I filed a petition for human rights relief to the Japan Federation of Bar Associations. And the Association announced its views that forced sterilisations under the former Eugenic Protection Law violated the human rights. That was a big turning point. Later it led to the first lawsuit around the country, which took place in Sendai. At a regular press conference after the lawsuit, the Governor of Miyagi Prefecture finally acknowledged that I had undergone sterilisation surgery. Considering the journey that took me 56 years since surgery and 20 years since I started the investigation, I can only say that it has been very long. So, I refresh my feelings and tell myself it is a new beginning. Next, I will raise my voice at the trial and want to make the victims of the whole country follow us. I urge the state to apologise to all survivors as soon as possible and to clarify the facts and make appropriate compensation. Finally, many of the survivors are old, already over 70 years old. I myself have a cancer. There is no time to wait. To the court, we would like you to listen to the voices of us survivors seriously and sincerely and look into the core of the issue and conduct a fair trial (Iizuka, 2018).

It was Iizuka who spent years on her own, opening the path for the national awakening on the issue of forced sterilisations under the Eugenics Protection Law. Only her persistent efforts to find out about her own case and the general background for two decades paved the way for Sato Yumi, supported by Sato Michiko, and other survivors to raise their voices. Another female survivor, Sora Hibari (pseudonym) gave her narration in Box 12.3.

Box 12.3: Sora Hibari’s testimony When I was in junior high school third grade, I had a high fever with Japanese encephalitis. I then became intellectually disabled because of that fever. I was registered as B1 classification of intellectual disability. After I graduated from high school, around that time, I was taken by my mother to an obstetrics and gynecology hospital in Osaka city, and I underwent a surgery around my stomach. I was hospitalised for a week to 10 days for the surgery. The operation was very painful, and I very was shocked in my mind. My mother gave me no explanation before the surgery. I had to undergo the surgery without knowing why and I did not wish to live, as I did not understand what was happening. I still cannot forget the pain of surgery and the huge shock I received from what I heard about the surgery from my mother afterwards. I was very shocked, so I still dearly remember the name and place of obstetrics and gynecology. After that, I got married. After the surgery, I heard from my mother that the surgery I received was to make me not able to have children. My mother said, ‘Do not tell people about this surgery, keep it secret’, and ‘It was because you will have a hard time if you have children.’ So, I have talked about the surgery only to my older sister, who is three years older than I am. I have not talked about my surgery to my husband. My husband and I have good relationship. I really wanted to have children with my husband. So, even after marriage, I was full of anger as to why I had this kind of surgery done. It was very shocking that I could not have a baby due to such a surgery. Under my navel, there is a

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scar, 2.5cm long, it remains clear even now. Every time I see this scar, I am sad. It is frustrating that I have been given surgery without my permission, even though I did not decide, even if I want a child, I cannot do it. I still cannot erase this disappointing feeling. I am 75 years old now, but I still do feel that, ‘I want to have my original body, the body before the surgery.’ This feeling has never changed. The strong feeling that I want another surgery to restore my body is not lost, even now. I want the state to know the magnitude of my shock and sorrow which still do not go away. Even if the law goes away, I sincerely hope the state understands that I live with my hurt feelings and with hurt body, that will never cure.

Sora’s statement illustrates the life-long damage done to her dignity and integrity, both enshrined in the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006), as well as the very personal and sensitive nature of information related to sterilisations. Survivors should be able to decide if, when and to whom, to disclose and share this, perhaps, most delicate information and protect their privacy.7 A male survivor from Hokkaido, Kojima Kikuo, shares his story in Box 12.4.

Box 12.4: Kojima Kikuo’s testimony At the time of surgery, I was taken to a mental hospital. I did not have a medical examination at the mental hospital, I was given anesthesia, fell asleep, and I woke up, I found myself in a solitary cell in a hospital. About three months after that, I was told, ‘Mr Kojima, you had a eugenic surgery.’ I asked ‘Why?’, I was told: ‘You have schizophrenia, you are disabled, and it is a problem if you have children.’ I felt so bad and cried. Surgery was done for a group of about five people, and each was called in turn. If you had refused it, you would have been given injections or put in solitary confinement, either way tough deal. I was afraid, gave up and underwent the eugenic surgery, but tears came out, thinking that I could not have children anymore. At that time, I was thinking ‘Who was to blame?’ I thought that the hospital was bad because I was 19 years old, was just a child at the time. Now I understood, however, after growing up, that the state was to blame. I am angry that the state had ordered that kind of thing. I am a person with disabilities and I was labeled as schizophrenia and received eugenic surgery. I wanted my own child and regret that I cannot have children. I feel it when I go to a zoo with my friends, for instance. Sometimes I cried. Still, I could not say this to my wife for a long time. However, in January of this year, I saw the news that people in Miyagi prefecture started the court case on eugenic surgery, I thought about raising my voice and trying. When I told my wife about this, she supported me. I felt encouraged and called lawyers. I want to fight from now on. There are about 10 people who underwent the same operation at a mental hospital, called Nakae Hospital. I came out with my real name in order to encourage others to come out. I thought that everyone will come out if I give out my real name.

Another survivor from Tokyo, Kita Saburo (pseudonym), shares his testimony in Box 12.5. 186

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Box 12.5: Kita Saburo’s testimony I had kept it a secret for over 40 years until I lost my beloved wife with leukemia. It was when I was in the second grade of junior high school, I had a surgery and since then I was not able to make children. A few days before my wife died, I confided the fact to her in the hospital room and apologised to her from the bottom of my heart. My wife was feeling bad as she was asked many times, ‘Why don’t you have children?’ My wife at her death bed nodded while listening to my story, and said nothing about the surgery, and left kind words, ‘When I am gone, eat well.’ When I heard about the lawsuit filed in Sendai January this year, I just could not keep sorrow and pain in my mind any more. My life has been hurt by the eugenic surgery. I want my life back. If that is not possible, at the very least, reveal the truth and recognise that the surgery was wrong. I have been supported by allies and asked for the record to be available. So far, the record has not been found. There are many people in the whole country who were sterilised. There are only partial records left in the country. There are many who are still hurting as their records are lost, they do not wish to offend their family members who had agreed to their surgeries, or they want to keep it private.

Both statements of Mr Kojima and Mr Kita show the harm of sterilisation within the context of the most important personal relationships. They also indicate the need for the careful process for apology and compensation. If they are done without the utmost caution, they can destroy the relationships and cause further damage.

Way forward For many years, the need for apology and compensation for the eugenic sterilisations based on the Eugenics Protection Law has been very clear but the public was not aware. The media did not pay much attention either. The efforts of Iizuka and her allies passed unnoticed. That all changed when Sato Yumi, supported by Sato Michiko, her sister-in-law, and a devoted team of lawyers, went to court in January 2018. The support from lawyers was essential. The most important factor was for survivors and families to come out and make a public appeal, with huge courage, in a society, in which disability still carries a lot of stigma.8 The political momentum created by Sato and others who followed, including Kita, Sora and Kojima, has led to the proposal for a law to provide an apology and compensation from members of parliament from the governing coalition. Most likely the apology and compensation will be provided in 2019, but it remains to be seen whether the entire picture of this massive human rights violation will emerge from the shadows of the history. Evident from the different and diverse voices that have made this change, is the clear need for the broad coalition and inclusivity to shift public opinion and policy. The change would have been impossible without the courage of those individuals with their allies to come forward to demand justice.

Postscript: apology and compensation achieved On 24 April 2019, the efforts of courageous individuals resulted in the apology and compensation from the parliament and executive branch of the government. The parliament 187

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(Diet) unanimously passed a law, offering apology and compensation to the survivors of sterilisations under the Eugenics Protection Law. The Prime Minister also apologised in his statement. This has been a remarkable development. Just a year and a half ago, few people outside of the disability community were aware of this gross human rights violation. This is clearly a step in the right direction. A number of challenges, however, do remain. There was no straightforward admission of responsibility from the parliament and the executive branch. The law does not recognise the unconstitutionality of the Eugenics Protection Law. The financial redress (3.2 million Japanese Yen, or about 27,000 Euro) is too low. But perhaps the major challenge is to carry out a comprehensive research into the background and the implementation process of this infamous law based on ableism, with the participation of survivors and organisations of both women and men with disabilities. And from the wider perspective, those sterilisations, abortions and hysterectomies, conducted outside of the scope of the Eugenics Protection Law, some still on-going, need to be addressed.

Acknowledgements This work was supported by JSPS KAKENHI Grant Numbers 18K01981 and 17H02614.

Notes 1 For the concise general information on the Eugenics Protection Law in English, see Tsuchiya (1997). 2 Another example of strategic litigation in Japan is the case of Election Law Reform (see Nagase, 2013). 3 Japanese names, like other East Asian names, start with a family name and are followed by a given name. Accordingly, Sato is a family name and Michiko is a given name. 4 Sato Michiko (pseudonym), 28 July 2018. Available at: http://www.arsvi.com/2010/20180728sm. htm (accessed on 31 October 2018). 5 On the 26 July 2016, nineteen persons with intellectual disabilities living at Tsukui Yamayuri En, a residential institution, were knifed to death by a former employee. It occurred at Sagamihara City, Kanagawa Prefecture. See Rich (2016a). 6 These statements, my translation, are from Yusei hogo ho higai bengodan (Lawyers supporting survivors of sterilisations) (2018), with permission. 7 I happen to know a person, outside of Japan where I live, who was sterilised in childhood but does not seem to know what exactly had happened. I cannot ask this person. 8 For examples, see Stevens (2013), Nakamura (2013) and Rich (2016b).

References Iizuka, J. (2018). Watashi no karada wo kaeshite hoshii (I want to have my body back). Yuseishujutsu ni taisuru shazai wo motomeru kai (Group to demand apology for eugenic surgeries) (ed). Yusei hogo ho ga okashita tsumi (Crimes committed by Eugenics Protection Law). Gendai Shokan, 21. Kuwabara, N. (2018). Girls aged just 9 among hundreds of minors forced to be sterilized. The Asahi Shimbun, 1 February 2018. Retrieved from http://www.asahi.com/ajw/articles/AJ201802010033. html on 31October 2018. McCurry, J. (2018). Japanese woman sues government over forced sterlisations. The Guardian, 20 January 2018. Nagase, O. (2013). Deprivation of voting rights ruled unconstitutional in Japan. International Disability Alliance Human Rights Publication Series, 1 March 2019. Retrieved from http://www.ohchr.org/ Documents/Issues/EqualParticipation/contributions/IDA.pdf on 31 October 2018. Nakamura, K. (2013). A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan. Ithaca: Cornell University Press. Niisato, et al. (2018). Sojo (petition). Tokyo: Japan. Rich, M. (2016a). Japan knife attack kills 19 at centre for disabled. The New York Times, 25 July 2016.

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Survivors of forced sterilisations Rich, M. (2016b). After mass knife attack in Japan, disabled victims are still in the shadows. The New York Times, 6 September 2016. Stevens, C. S. (2013). Disability in Japan. New York: Routledge. Tsuchiya, T. (1997). Eugenic sterilisations in Japan and recent demands for apology: a report. Newsletter of the Network on Ethics and Intellectual Disability 3(1), 1–4. United Nations (UN). (2006). Convention for the Rights of Persons with Disabilities, New York: United Nations. Yusei hogo ho higai bengodan (Lawyers supporting survivors of sterilisations). (2018). ‘Yusei shujutsu higai tojisha no koe’ (Voices of the survivors of sterilisations). Retrieved from http://yuseibengo. wpblog.jp/archives/130 on 31 October 2018.

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13 INDIGENOUS SPECIES Khairani Barokka

Introduction In 2013, I wrote a poem in Jakarta that seemed to propel itself onto the page. The idea I had in mind was to craft an accessible spoken word performance, involving subtitles and video art projections. What poured out onto the page encapsulated all the fury, dismay and deep sadness that wells up when I encounter news stories on Indonesia’s oceans, air or indigenous peoples. Stories of pollution and indiscriminate destruction; of short sightedness, irresponsibility and implicit disrespect; of circumstances which no human being should ever have to experience. The destruction continues year by year, through the fires and forced relocations used to clear the way for new factories and plantations, through the seas of rubbish that surround our 17,000-plus islands, and through the deadly smog, which killed nearly 100,000 Indonesians last year alone, and many thousands abroad. As a result, this is not just Indonesia’s story. At this ominous stage of climate change, all of our futures are tied to that of the orangutans in Kalimantan, of the hundreds of indigenous cultures spread across the islands, of kids in Jakarta whose days are spent laughing and singing amidst automobile fumes. We live in a world where what we ingest, peruse in bookstores, slather on and wash off, are all direct products of unsustainable forestry systems, where the crises of ecosystems may not enter the consciousness of those who consume their fruits on a daily basis. We are all just trying to live a good life, and for many of us that entails access to products, whether ‘budget’ or ‘luxury’, that are tapped from jungles we’ve never even been close to. So out came Indigenous Species, first performed in 2013, as a spoken word poem at Melbourne’s Emerging Writers’ Festival. And then, one day, I found myself at a residency in Malaysia, a place of quiet and calm. Trees outside my window; holding the city at arm’s length. Thinking about the jungle, I remembered this poem, and found that the images I’d imagined for the original production were still there inside my head. Long story short, it became a proposal for a book, one where these images would be a tactile experience, existing alongside text – and also alongside Braille. The last thing this book is meant to be is an act of charity. As a disabled person myself, but one who accesses two-dimensional text and images with ease (thanks to glasses and contacts), I am an outsider who in no way intends to ‘voice for the voices of the voiceless’, or 190

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to imply that blind and visually-impaired people are not long-standing advocates for their own community. This community includes several friends and colleagues, to whom I am hugely indebted for educating me. I am also in favour of at least understanding the social model of disability, where ‘disabled’ is not the opposite of ‘unable’ but ‘enabled’, and that many disabilities are societal and societally exacerbated. However, the fact that this artwork in book form contains many gradients of understanding that will vary for the reader, in terms of what ‘disablement’ means as well as ‘indigeneity’, is hoped to further the relationship in readers’ minds between the need for a plurality of understandings of disability that go beyond the social model, as well as the link between this and the survival of indigenous cultures – particularly considering plurality between and within cultures deemed ‘indigenous’.

Indigenous Species The Braille-and-tactile form of Indigenous Species is an effort to emphasise one form of such discrimination, which persists in the publishing industry. Its contents, however, were created in a haze of anger and bewilderment at what has been happening in my own and other countries. If you’re sighted and are reading the ‘flat’, non-Braille, non-tactile version, you’ll notice the word ‘Braille’ (in Braille) on every other page. This is an attempt to invert what Kleege (2006) alerts us to in her article ‘Visible Braille/Invisible Blindness’ – the usual visibility of Braille in public places for the benefit of sighted people. I believe this corresponds to the usual lack of Braille in literature meant for sighted people, which can mask publishing’s discrimination. Thus, Indigenous Species attempts to make the absence of Braille visible and felt in its sighted-reader version, just as sight-impaired or blind readers feel its absence in every two-dimensional book.

Figure 13.1  T  he swirling, bright river forms a whirlpool, its circular movements reminiscent of tree trunk rings. The word “Braille” in Braille is in the background, indicating where translations would be in the Braille version.

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Figure 13.2  The swirling, bright river forms a whirlpool, its circular movements reminiscence of tree trunk rings.

Figure 13.3  The river flows around the text, Dayak symbols for travel in and around it.

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Indigenous Species is an art book narrated by an abducted young woman taken on a riverboat. It is threaded through with a call towards decolonisation – not only against narratives of Western countries about non-Western countries’ environment, but in the impacts of Western policies, such as instalment of dictators like Indonesia’s Soeharto, whose socioenvironmental policies of violent resource extraction over three decades are still decimating the country today, 20 years after he was forced to step down. Amongst what we glean of her, we know she is indigenous to Indonesia, a vastly diverse country with hundreds of languages and cultures, but altogether being decimated environmentally. Anger, resistance, and mourning are voiced by the anonymous narrator, along with the urge to protect nature and cultures, and this is deeply intertwined with the power she is denied and trying to reclaim as a captive. Indigenous Species shows that feminisms are not equal – the lipstick in Iowa made of Indonesian rainforest, on one page, shows how femininity and women’s empowerment in one part of the world often comes unthinkingly at great cost to women elsewhere, and how the global supply chain encourages this lack of awareness. As an art book, further, it shows that sighted feminisms in particular are privileged over non-sighted feminisms, as the absence of Braille is noted on every left-hand page, with the word ‘Braille’ in that language. Indeed, calling one version of the book – the one without Braille – ‘the sighted version’ was very intentional, as we sighted people so rarely recognise ourselves as such. Decolonisation, environmental justice on a global scale, particularly for indigenous peoples, and undoing ableism are all, therefore, shown to be intertwined. I’d like to think the book also subtly questions what ‘indigenous feminisms’ mean, focusing not on labels but on the affective experience of emotional response to environmental loss, and the ability for that emotion to contain within it any number of feminisms (always plural). What makes someone ‘indigenous’? In what contexts do we use the word – in Britain, is it used to exclude ‘migrant women’ and refugees from the right to human dignity? Is it used to denote ‘native’ in a way that’s derogatory? Is it all about how you feel about where you come from, and the different meanings of ‘coming from’ a place? The journey of Indigenous Species’ narrator, on a river, parallels the existential crises we all face as humans living in an age of environmental crisis or anthropocene, where the very survival of our planet and our species is under threat from climate change, and we are all on a river we didn’t sign up for, hoping for an ending that provides a landing place for future generations. Amidst all this, women, LGBTQI+, religious minorities and other communities, especially from the global South, are trying to emphasise that no one can say they are speaking on behalf of us as ‘voiceless’ – we have always existed and always stated our claims. The issue is who gets a platform in the fight for gender parity as indelibly linked to environmental survival. The decimation of women’s lands and indigenous women’s knowledge matters, and it’s a crisis with many struggling to protect rainforests, coral reefs, and innumerable habitats for humanity’s sake. When countless natural medicines from the rainforests are decimated, destroying the possibility of widespread cures for illness, it is humanity’s crisis. When mines cause widespread mercury poisoning, affecting communities across riverine lands, it’s humanity’s crisis. When girls can’t go to school because of forest fire haze, which killed over 100,000 people in Indonesia alone last year, it is humanity’s crisis. In my writing and artwork, I tend to mess with the notion of endings. Once asked, ‘Why do the women in your stories always have happy endings?’, I’ve wondered if isn’t it more realistic to portray brutal ends, society as it is for women. Society as it ends women’s narratives prematurely and often violently? For years, I’ve been grappling with this notion of ‘escape’, of feminist narratives where safety ends up uncertain, or taken away. We can’t escape what’s 193

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happening to our one and only planet. We need to build narratives and a sense of urgency, to recognise that we too are on a river, that there is a dire need to preserve indigenous knowledge systems and ecosystems, and that as with the heroine on a precarious boat, it is up to us to save ourselves.

References Barokka, K. (2016). Indigenous Species. Tilted Axis Press. Barokka, K. (2017). ‘Indigenous Feminisms’, Ablenormativity, and Women Who Escape [blog post]. Tilted Axis Press Blog. Kleege, G. (2006). Visible Braille/invisible blindness. Journal of visual culture 5(2), 209–218.

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PART V

Reclaiming social positions, places and spaces

14 DISABILITY SPORT AND SOCIAL ACTIVISM Damian Haslett and Brett Smith

Introduction Kurt Fearnley, five-time Paralympian wheelchair racer, deliberately exploited his spotlight as the Team Australia flag bearer for the 2018 Commonwealth Games to directly challenge the oppression of disabled people. Whilst summarising his sporting journey to success, he drew attention to his social activist mission outside of sport: One last big community who I am proud to be a part of and need to recognise is the disability community. Every battle I win on the track or for a new ramp or change of policy that brings long-deserved rights and access to people with disabilities – is their win. If I can use my profile and ugly mug to give a voice and face to those who don’t have the chance themselves, I must (Fearnley, 2018). As part of a growing interest in nondisabled sport and social activism (e.g. Coombs & Cassilo, 2017; Sanderson et al., 2016), some researchers have recently begun to focus on disability sport and social activism (Braye, 2016; Bundon & Hurd Clarke, 2014; Smith et al., 2016; Powis, 2018). This chapter provides a road map of the latest developments in this emerging field. To provide a context for the chapter, the value of sport as a possible domain to promote social justice is first highlighted. Next, a case is made for the potential of Paralympic sport as a domain to promote disability activism and, more importantly, the conceivable constraints. Following this, Para sport athlete activism research is also discussed. The chapter concludes with a set of future research directions in relation to disability sport and social activism.

Sport and social justice In recent years, there has been a resurgence of media and research focusing on sport and social justice, such as a focus on athlete activism (e.g. Smith et al., 2016; Coombs & Cassilo, 2017). Here we follow Tibbetts et al. (2017) in defining athlete activism as occurring when athletes use their platform as a sports performer (e.g. visibility, inherent social power) to speak out or build awareness about a social cause or issue (e.g. challenging disability ­inequality). That process can involve athletes themselves either advocating for social change within sport contexts 197

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or utilising sport as a stage to address wider issues in society (Bundon & Hurd Clarke, 2014; Smith et al., 2016; Kaufman & Wolff, 2010). Such activism by athletes has recently been embodied by some elite sporting ‘stars’ in certain countries. For example, in 2016, American athletes like Colin Kaepernick staged symbolic protests by refusing to stand for the national anthem at major sports games in order to shine a light on issues like racially motivated community police brutality (BBC World Service, 2017a). Their actions kick-started a wave of athlete activism across the United States of ­A merica (USA) sporting world throughout 2017 and 2018. Set against a divisive American political climate, exemplified by President Trump’s rhetoric that activist athletes should ‘know their place’ and ‘stick to sports’ (BBC World Service, 2017b), media fascination with sport and activism became prominent. As the rap artist Eminem put it, black athletes across America have become ‘woke’ to social injustice and are ‘using their platform ‘n’ stature to give a voice to those that don’t have one’ (Associated Press, 2017). Also in late 2017, this wave of activism reached the shores of Ireland in the form of ‘Gaelic Voices for Change’; a Gaelic games ­athlete-led social movement mobilised to tackle the issue of homelessness (McGarry, 2017). Accompanying such public displays of activism by nondisabled athletes and the resulting media attention, there has been an increasing scholarly interest in sport and social activism. For example, the International Journal of the History of Sport recently issued a collection of essays on sport and social justice (e.g. Boykoff, 2017; Cronin, 2017; Kilcline, 2017; Lenskyj, 2017; Morgan, 2017). Together, the essays offer reasons as to why historically sports have been used as domains to challenge social inequality. One reason offered is that because sports often resonate with the public, incidents of athlete activism become embedded in generational cultural discourses and, in turn, are passed down through generations. Likewise, sports have a power to connect people who differ in terms of historical, economic, religious or political beliefs. For these reasons, major sporting events like the Olympic Games have become what social movement scholars call ‘political opportunity structures’ (Cottrell & Nelson, 2010). Whilst some political opportunities may be about seeking to show national power and wealth, other opportunities include the potential structural platform for displaying activism. In addition, historically, as the essays show, incidents of athlete activism often accompany politically challenging times (KultureHub, 2017). One notable example is Muhammad Ali’s famed Vietman war draft refusal (Coombs & Cassilo, 2017). Such events remind us that athlete activism is not new, but rather has historically been performed for a long time. Of course, as history also shows, athletes publicly doing activism are still relatively rare when one considers the number of athletes competing across the globe over time. In addition to scholars producing historically framed essays on activism, some professional academic societies have begun to explicitly take social justice matters seriously. For instance, the Society for Sport, Exercise and Performance Psychology recently created an evidence-based educational fact-sheet to guide sport practitioners (e.g. psychologists, coaches) on how to support and facilitate athlete activism (Tibbetts et al., 2017). That Society highlighted the positive impacts (e.g. greater sense of purpose) and negative impacts (e.g. public backlash) of athletes who become activists. The International Society of Sport Psychology also published a position stand that called for researchers to take seriously and promote social justice in their work (see Schinke et al., 2015). Along with such organisations, individual scholars have also contributed to the topic of activism by: exploring athlete activist styles and ideologies (Coombs & Cassilo, 2017); investigating how the relationship between athlete activism, social media and social identity can contribute to societal change (Sanderson et al., 2016); describing a typology of types of athlete activism (Cooper et al., 2017); and highlighting the consequences of athletes becoming activists (Kaufman, 2008). 198

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As part of the historical development of activism in sporting and academic contexts, a significant development in sporting activism research was the creation of the Institute for the Study of Sport, Society and Social Change (ISSSSC) at San José State University in January 2017. According to Rahim (2017), the ISSSSC is a hive-mind of athletes, activists and academics, who research and disseminate developments at the intersection of sport, athlete activism and societal change. It is noteworthy that this research institute was launched by the prominent sociologist and athlete activist, Dr Harry Edwards, who half a century earlier, during a similar divisive American political climate, created the Olympic Project for Human Rights (OPHR) to campaign against racism in sport and racial segregation around the world. Famously, the OPHR was responsible for history’s most cited episode of athlete activism: the 1968 Mexico Summer Olympics Black Power Salute. In this iconic incident in the Mexico City Olympic Park, the 200-meter final running medallists and OPHR members, Tommy Smith (gold) and John Carlos (bronze), who represented the USA, deliberately exploited the medal ceremony to raise black-gloved fists in a powerful political statement about racial inequality. For Dr Edwards, the time is now ripe for the ISSSSC; he argues that we can learn useful lessons from the past because although the issues of the day can shift (e.g. race, gender, class, disability), the overarching problems remain constant – or at least are still very much here (e.g. power, social inequality, patriarchy) (Rahim, 2017). Set against this brief historical context, it is important to note that the focus of sport activism research has predominately been on issues such as race, gender, class and mental health. However, in comparison to such issues, disability has received much less attention or has been ignored. Despite such neglect, as we highlight next, the context of disability sport needs examining in terms of social activism.

Paralympic sport: a potential context for disability activism Why might Paralympic sport be a valuable context to promote disability activism? Researchers have highlighted several interrelated reasons. First, the Paralympic Games is becoming increasingly popular as a sporting spectacle. For example, 5,000 broadcast hours of the Rio 2016 Paralympic Games were shown to four billion people in over 150 counties.1 That amount of broadcasting hours is more than the two previous Games combined. As a result of such a vast increase in hours, the Paralympics is now a contender to be considered the world’s third largest sporting event, after the Olympics and FIFA world cup (Kropielnicki et al., 2017). For this platform to reach a vast number of people across the globe, provides an increasing opportunity for Para sport athletes to promote disability equity. Brittain and ­Beacom (2016, p. 155) argued that: The worldwide media coverage of recent Paralympic Games presents a strong platform from which to start a debate around disability issues. There is no other current platform that provides such an opportunity to reach so many nondisabled people who are otherwise generally oblivious to disability issues. Second, along with an increase in the amount of media coverage, the type of media coverage that surround Para sport athletes has shifted in favour of athlete activism. Historically, media commentators have struggled when trying to communicate disability and sport (see Ellis & Goggin, 2015). That is, Para sport athletes have often been misrepresented in the media as, for example, ‘superhumans’ for playing sports, or as ‘brave athletes’ for overcoming their impairment. Grue (2016), for instance, contextualises the media coverage of Paralympic 199

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games as inspiration porn for nondisabled viewers. Media portrayals like these, damage the social imagination of disability and prevent athletes from representing themselves as whole people, such as social activists (Ellis & Goggin, 2015). However, recently, studies on media portrayals of Para sport have found an increase in athletes describing societal barriers in the media as well as a decrease in the emphasis given to accounts of physical impairment (see McPherson et al., 2016). Likewise, a study by Claydon (2015) found that innovative media campaigns of the London 2012 Paralympics influenced more independent representations of disability in other areas of the media (e.g. more disabled people shown driving on television programmes). Also, through social media platforms, Para sport athletes now possess the means to express themselves in ways that they control much more (Pate et al., 2014). Such platforms provide a further opportunity for disabled athletes to engage in disability activism. Through such platforms, modern Para sport athlete can represent their multi-faceted identities, like a thriving athlete, or an inspirational role-model, or a conscientious citizen with a concern for social justice. Third, the Paralympic Games were explicitly founded on a legacy to improve the lives of disabled people (Brittain & Beacom, 2016). This legacy, combined with the Paralympic value equality, complements the agendas of disability activism (e.g. challenging inequality). For example, the International Paralympic Committee (IPC) has an explicit agenda to promote the Games as a vehicle for social change. The IPC claims that, through displays of elite sport, Para sport athletes breakdown social barriers and discrimination by challenging negative stereotypes of disability (e.g. weak, passive) and transforming attitudes.2 The ostensible ‘success’ of this agenda is also harnessed by recent Games host nations. For ­example, the London Organising Committee, the IPC, and the UK Government all claimed the London 2012 Paralympic Games positively impacted the lives of disabled people in the UK ­( Brittain & Beacom, 2016). These claims are given further force by quantitative (see B ­ rittain & Beacom, 2016) and qualitative (e.g. Hodges et al., 2014) studies, which suggested a positive shift in public attitudes towards disability in the UK as a result of the Paralympic Games. For example, fewer attitudes of sympathy or pity towards people with impairment have been reported (Hodges et al., 2014). In light of such claims, it would appear that those interested in social activism have an opportunity to capitalise on this positive shift in public attitudes. Fourth, there is a growing interest among researchers about how sport contexts can be shaped to enable social missions, such as promoting disabled athlete activism. For example, as briefly noted earlier, the International Society of Sport Psychology recently issued a position stand to disseminate the general principles required to craft sport contexts to promote social or political agendas (see Schinke et al., 2015). This position stand explains that the values, language and virtues of sport (e.g. fairness, leadership, inclusion, community, sportsmanship) complement the aims of social activism (e.g. inclusion, equality). Also, the position stand emphasises that sport has the potential to reinterpret negative notions of difference and dispel stereotypes. Importantly, however, the authors of the position stand highlight potential obstacles to promoting social activism within sport contexts. For instance, sports organisations may not be structurally, methodologically or ideologically equipped to support social justice agendas (Schinke et al., 2015). The article goes on to explain the specific competencies that researchers need to promote social justice missions through sport. For example, the i­mportance of understanding the historical-social-cultural-political contexts of Para sport athletes’ lives. Finally, promoting activism in sporting contexts and organisations complements a growing connection with the field of critical disability studies (CDS) amongst disability sport scholars (e.g. Smith & Perrier, 2014; Townsend et al., 2016; Townsend et al., 2017; Keer & Howe, 2017; 200

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Smith & Bundon, 2018). As CDS scholars foreground disability as a political issue (Goodley, 2016), this connection allows sport researchers to take disability activism seriously. For instance, traditionally, disability sport psychology research has generally f­ocused on individual qualities like the motivational factors that influence participation (e.g. Jaarsma et al., 2016), or how participation in sport impacts on personal health (e.g. Martin, 2015). Sport psychology research on disability has also, as Smith and Perrier (2014) claim, ‘either knowingly or unknowingly, often been framed by a medical model understanding of disabled people’ (p. 95). However, emerging CDS sport researchers can not only appreciate important aspects of the social model of disability (e.g. structural and attitudinal barriers), they can also consider how various forms of political activism shape the lives of disabled people (Smith et al., 2016; Keer & Howe, 2017), and then use findings to challenge conditions of disablism and an ableist culture (see Bundon et al., 2018). CDS is a transformative theoretical avenue that can provide progressive disability sport scholars with an appropriate paradigm to support and investigate the experience and influence of Para sport athlete activism (Smith & Perrier, 2014). However, despite these arguments for opportunity, as we will next discuss, there is an important potential constraint to consider when considering disability sport and social activism.

Paralympic sport and disability rights: a historically tumultuous relationship Scholars have highlighted an important possible constraint to promoting disability sport as a domain for disability activism – the relationship between elite Paralympic sport systems and the disability rights movement. Bundon and Hurd Clarke (2014) describe this relationship as historically tumultuous. Braye (2017b) describes the IPC and the disability rights movement as unlikely bedfellows; opposed in ideology and related only by their connection to ­d isability. There are several reasons for these types of description. For instance, there is evidence that disability activist groups adamantly oppose and explicitly protest corporate relationships that the IPC has sought and developed (Pearson & Trevisan, 2015). Also, some disability activists believe that the Paralympics has a negative impact on disability (Braye et  al., 2013). One such claim is that Paralympians are not suitable advocates for disability issues because the typical experiences of disability are too far away from the image of a Paralympian (Braye et al., 2013). Additionally, claims that London 2012 Paralympics improved the lives of people with disabilities in the UK (Brittain & Beacom, 2016), are at odds with findings from disabled peoples organisations (DPOs). These DPOs argue that any Paralympic legacy must be viewed in the context of large scale benefit cuts in the UK at the time that affected disabled people directly and societal attitudes towards disabled people (e.g. portrayed as benefit scroungers in the media) (Brittain & Beacom, 2016). Therefore, as the Paralympic sport context can be source of annoyance for disabled people and disability activists (Hodges et al., 2014; Shakespeare, 2016), the potential of Para sport as a domain to promote activism could be limited, or not currently as powerful as some might suggest. Prominent disability rights scholars have historically ignored the potential of the Paralympic sport for promoting disability activism (Braye et al., 2015). For example, Shakespeare (2016) argued that prevailing narratives of individual athletes ‘overcoming their limitations’ misrepresent disability. He says that common narratives of ‘heroic overcoming’, shifts the focus away from social barriers, such as poverty, that oppress disabled people (Shakespeare, 2016). Moreover, three disability and sport researchers – Stuart Braye, David Howe and Danielle Peers – who are all former Paralympians themselves, have argued strongly that the Paralympics could even be counterproductive to the lives of disabled people beyond sport 201

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(Peers, 2012; Braye et al., 2015; Howe & Silva, 2016). Peers (2012, p. 311), for example, claims that: Paralympic discourses and practices, in contrast to the claim of empowerment, are i­mplicated in the perpetuation of the practices and unequal power relationships in and through which disability is experienced and sustained. Braye et al. (2015) highlighted that the positive societal impact of Paralympic sport is ­overemphasised because more than often, nondisabled people write Paralympic discourse. Finally, the IPC has gradually moved towards an elite Olympic sports model (Brittain & Beacom, 2016). And this move exemplifies how, in many ways, elite Paralympic sport, like all elite sport, can exclude and differentiate (Schantz & Gilbert, 2011; Howe & Silva, 2016). For instance, many disabled people do not have the physical ability to participant in Para sports at a recreational level (Howe & Silva, 2016). This situation demonstrates a hierarchy of ability within Paralympic sport that could undermine the agendas of disability activism (e.g. social inclusion). Also, related to this shift in direction, promoting Para sport athlete activism could be limited by a contradiction that Purdue and Howe (2012) call the Paralympic paradox. That is, elite Para sport athletes are simultaneously under pressure to invalidate perceptions of disability solely focusing on athletic ability, and at the same time, under pressure act as role models for disabled people. However, despite these potential constraints, it is important to note that disability rights scholars increasingly welcome the potential of disability sport as a domain to promote disability activism (Goodley, 2016; Shakespeare, 2016; Braye, 2017a). Braye (2017a), for example, argued that because the Paralympics Games portrays a false impression that disabled people have equal opportunities in society, it should be explicitly utilised to raise emotive disability issues (e.g. a site for overt protests like athletes turning their backs to national flags). Also, as discussed next, scholars have recently started to investigate the experience of disabled athlete activism.

Para sport athlete activism Although there has been some work talking about disability, sport and activism, there is limited amount of empirical research that specially studies disability sport as a domain to promote disability activism. However, four empirical qualitative studies from the UK and Canada, focused on the experience of Para sport athlete activism, provide a useful starting point and an emerging evidence base to advance research (Bundon & Hurd Clarke, 2014; Braye, 2016; Smith et al., 2016; Powis, 2018). Bundon and Hurd Clarke (2014) first explored the various advocacy styles that Canadian Para sport athletes adopt to promote changes within Para sport contexts (e.g. creating more accessible and inclusive sports environments). They described a continuum of advocacy styles amongst Para sport athletes. These included more congenial styles (e.g. making friendly and quiet suggestions for change), to the more confrontational styles (e.g. demanding inclusive policies and insisting on rights), to a mixture of congenial and confrontational styles (e.g. engaging in a power struggle). Athletes reported that the choice of strategy was influenced by the perceived backlash and effectiveness of advocating. Bundon and Hurd Clarke (2014) further argued that within disability sport contexts, feelings of exclusion can fuel advocacy engagement, and that advocacy competence improves with practice. They also noted that, within disability sport contexts, it is entirely possible to be included in policy but ­remain excluded by practices. Importantly, Bundon and Hurd Clarke (2014) highlighted that 202

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inequalities within disability sport contexts should be viewed as inexplicitly linked to wider inequalities in society. In another study, Smith et al. (2016) explained that the 36 elite level UK Para sport athletes they interviewed and observed often adopted an ‘athlete activist identity’ by advocating for social changes inside sport. However, few adopted what they defined as a ‘political activist identity’ in which participants advocated for social changes beyond sport (Smith et al., 2016). In comparison to the majority of the elite athletes in the study, these ‘political activist’ athletes would call-out discrimination in public, sign petitions for disability rights, produce blogs or tweets that highlight disability inequality, and explicitly utilise their status as athletes to challenge disability oppression. Unlike most of the elite athletes in the study who described themselves as solely ‘athletes’ this group also described themselves as ‘disabled athletes’, purposefully positioning disability first to emphasise the significance of disability and show they were proud to be disabled. In so doing, it was hoped that such ‘disability first’ identity language would constitute, at least in part, a form of activism. The very same athletes who described themselves as political and disabled in the study by Smith et al. (2016), reported that they were hailed to political action after hearing stories of oppression outside sport. They also reported that acts of activism did not negatively impact on their sporting performance. That was vital to highlight as the majority of participants in the study believed that the emotional effort involved in political activism would negatively impact on performance. The same athletes further believed that disabled people were largely treated fairly, equally and respectfully in society. Notably, some athletes described how they became more politically activist after retiring from elite sport. This was because they became more aware of social oppression after leaving the ‘bubble of sport’. For example, some reported that encountering oppressive employment barriers had an impact on their health and wellbeing. Finally, the retired Para sport athletes in this study advised that active athletes could benefit (e.g. improve wellbeing) from becoming politically activists or at least politically aware while still playing sport (Smith et al., 2016). Braye (2016) added to this emerging field by describing how Para sport athlete activism can arise in various forms. For example, five of the six retired UK Paralympians he interviewed were not explicitly aware of the disability rights movement but nevertheless, they still contributed towards disability equity. That is, they made a difference through, for example, giving motivational talks, or working in influential employment positions, or even by working in jobs not immediately associated with disability (e.g. sports science technician). The retired elite Para sport athletes also provided interesting observations about the relationship between Paralympic sport structures and disability activist groups. Some felt that disability activism was reserved for people with much more severe impairments. Others noted that the increasing media interest in Para sport has only influenced inclusivity for people with less significant levels of impairment. Also, the athletes warned that because Paralympic athletes are the most publicised disabled people there is a damaging societal expectation that all disabled people ought to be able to complete in sport and be ‘supercrips’. In addition, they highlighted that disability activists who are critical of the Para sport should focus their ­c riticism more towards the Paralympic system and less towards Para sport athletes. Powis (2018) reflected on ethnographic fieldwork with the England Visually Impaired Cricket squad. In an attempt to create transformative research, he had hoped that the athletes would advocate for social change around disability. However, whilst the athletes in this study desired wider recognition of their abilities, the majority rejected the label of disability – equating disability with a medical limitation. In addition, he reported many athletes had not 203

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experienced social oppression. Powis (2018) surmised that engagement in disability activism is not compatible with athletes who choose to reject a disabled identity. Whilst these scholars contribute a useful analysis of the experience of Para sport athlete activism, research on disability sport as a domain to promote social justice is at an early stage: predominantly involving studies with elite-level para athletes in the UK. This leads us to offering for consideration various future directions. Of course, these directions are not exhaustive. We hope each offers some possibilities to develop research with disabled people in terms of sport and activism.

Future directions: expanding research on disability sport and social activism To promote disability sport as a domain for social activism, the empirical, conceptual and methodological scope of research requires innovation. Empirically, future research might benefit from co-creating activism strategies with various stakeholders connected to the disability sport domain. This could involve researchers engaging in participatory action ­research with disability activists groups and disability sport organisations (Smith & Perrier, 2014). This is important because future research needs to consider that the ecology of disability activism is ever changing and innovating (e.g. online activism) (see Trevisan, 2017b). Therefore, participatory action research could, for example, stay connected to the shifting ideologies and strategic positions of new digitised innovative disability activist movements. Also, as we discussed, the landscape of disability sport is ever changing too. For example, elite Paralympic sport is not synonymous with all disability sport contexts (e.g. deaf sports, dwarf sports, inclusive sports, recreational athletes). Therefore, future studies require the perspective of a range of recreational disabled athletes, retired athletes, coaches and key ­influencers (e.g. directors) from a variety of disability sports organisations. New empirical work should also explore the context of social activism in sport that incorporates cultural designs. There is a need to investigate Para sport athletes’ orientations towards social activism beyond Global North and Paralympic sport contexts. Therefore, exploring narratives of disability activism surrounding, for example, the Invictus Games (Para sport event for wounded soldiers) would also have value. In addition, future empirical work should go beyond a specific focus on disability activism towards, for example, an interest in general social and political engagement amongst athletes. For example, exploring the experience of Para sport athletes who use their profiles to address issues like homelessness or LGTB rights. That move can be enhanced through a focus on intersectionality; that is, research should just not consider activism in terms of disability but should extend the focus to include an examination of the intersections and contradictions of disability, gender, race, age, class, sexuality, and so on (see Crenshaw, 1991). Conceptually, and complementing a move to intersectionality, future research on disability sport and social activism will benefit from engaging with critical disability studies (CDS) (Goodley, 2016) along with a future forming mode of inquiry (Gergen, 2016). CDS, a transdisciplinary and transformative perspective, can allow researchers to analyse disability sport and social activism in various fruitful ways. For example, and connecting with ‘new materialism’, one can examine how the material influences of technological change and acts on people to promote social activism in sport (Feely, 2016). Researchers might also explore how things affect how different people and cultures respond emotionally to disability activism in sport (Goodley et al., 2017). In addition, CDS encourages researchers to connect with sophisticated social theories to make sense of disability sport and societal change (Goodley, 2016). For instance, an investigation 204

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of social activism requires attending to concepts from social movement literature, such as, collective behaviour, relative deprivation and political opportunity (Corning & Myers, 2002). CDS also allows researchers to analyse how economic context can influence the lived experience of disability; for example, how widening inequality and ‘neoliberal’ policies impact on social activism (Goodley, 2016). Moreover, CDS connects disability with other forms of oppression and political activism (Goodley, 2016). And, importantly, CDS remains critical of CDS research, therefore it is important to acknowledge gender in the research process as many people in sport development and research are men. Connecting with intersectionality can highlight how markers of disability, social class, race, gender and so on intersect and constitute each other. CDS also allows researchers to stay attuned to how relational qualities of disability (e.g. embodied impairment in a cultural context) can influence social activism (see Thomas, 2007). Furthermore, a future-forming mode of inquiry (see Gergen, 2015; Gergen, 2016) can assist activist researchers working within a CDS paradigm (e.g. deal with challenge of rapid technological and socio-political change). A future forming inquiry involves a shift from traditional psychological modes of inquiry, such as a focus on predictive ‘truths’, towards societally focused research. Thus, the concern of future-forming inquiry moves from ‘what is’ to ‘what ought to be’ (Gergen, 2015). Importantly, therefore, various values of social activism (equality, rights, empowerment) become important in research designs in terms of thinking about what ought to be. Furthermore, Gergen (2016) argues that this future-forming socially focused approach suits an openness to interdisciplinary collaboration and a wide range of research practices (e.g. quantitative and qualitative methods) (Gergen, 2016). Methodologically, research on activism in Para sport contexts might, as we move ­forward, incorporate an appropriate repertoire of methods. For example, quantitative methods can access athletes propensity to engage across a broad continuum of social issues engagement behaviours (see Corning & Myers, 2002). Then, qualitative methods can be drawn upon to centralise culture and context; for example, narrative methodologies (e.g. privilege the influence of cultural ‘stories’ on experience and identity) can be used to analyse the experience of activism (Smith, 2016; Smith et al., 2016). Likewise, discursive methodologies (e.g. privilege the influence of discourse and micro-talk on experience) can be used to illuminate how cultural discourses interact with activist identity and meaning (McGannon & Smith, 2015). However, importantly, qualitative designs should go beyond one-stop personal interviews to incorporate focus groups or longitudinal designs that can investigate activism and social change over time (Smith & Sparkes, 2016). Furthermore, innovative elicitation methods could be incorporated into qualitative research; for example, auto photography (Noland, 2006) and story completion (Braun et al., 2018) methods are useful tools to explore sensitive topics or make connections with marginalized populations. Finally, digital storytelling methods can connect and develop Para sport athlete activism through athletes sharing stories of social and political engagement (Bundon & Smith, 2017; Trevisan 2017a).

Conclusion Sport and social justice research focused on activism is timely. A recent wave of athlete activism has highlighted the potential of sport to promote social missions. As we have discussed, some values of sport and characteristics of athletes complement the principles and agendas of social activism. Within this developing field, and without getting carried away, there are strong arguments for the potential of contemporary disability sport as a platform to promote disability activism. These include the growing popularity and changing social attitudes towards Paralympic sport as well as new ways of thinking amongst sport psychology researchers. 205

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Although the relationship between elite disability sport systems and the disability rights movement has been turbulent at times, some researchers have begun e­ mpirical work focused on the experience of Para sport athlete activism. These studies lay the ground work for future directions. For example, an analysis of Para sport athlete activism could benefit from being investigated as a contextually informed continuum of advocacy behaviours within a critical disability studies paradigm. We hope that this chapter has encouraged people to think more critically about the potential of disability sport as a vehicle to address inequality. Likewise, we hope to stimulate a debate within disability sport systems about how disabled people’s stories about activism can be amplified for positive social change and affirmative ways of becoming.

Notes 1 See www.paralympic.org. 2 See www.paralympic.org.

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Haslett & Smith McPherson, G., O’Donnell, H., McGillivray, D., & Misener, L. (2016). Elite athletes or superstars? Media representation of para-athletes at the Glasgow 2014 Commonwealth Games. Disability & Society 31(5), 659–675. Morgan, E. J. (2017). Don’t play ball with South Africa: The United States, the Anti-Apartheid ­Movement, and the Davis Cup protests. The International Journal of the History of Sport, 1–17. Noland, C. (2006). Auto-photography as research practice: identity and self-esteem research. Journal of Research Practice 2(1), 1–15. Pate, J. R., Hardin, B., & Ruihley, B. (2014). Speak for yourself: analysing how US athletes used self-presentation on twitter during the 2012 London Paralympic Games. International Journal Sport Management and Marketing 15(3/4), 142–162. Pearson, C., & Trevisan, F. (2015). Disability activism in the new media ecology: campaigning strategies in the digital era. Disability & Society 30(6), 924–940. Peers, D. (2012). Patients, athletes, freaks: Paralympism and the reproduction of disability. Journal of Sport and Social Issues 36(3), 295–316. Powis, B. (2018). Transformation, advocacy and voice in disability sport research. In T. F. Carter, D. Burdsey, & M. Doidge (eds), Transforming Sport: Knowledges, Practices, Structures (pp. 248–259). Abingdon and New York: Routledge. Purdue, D., & Howe, P. (2012). See the sport, not the disability: exploring the Paralympic paradox. Qualitative Research in Sport, Exercise and Health 4(2), 189–205. Rahim, S. (2017). Harry Edwards is building an institute for the modern athlete-activist [online newspaper article]. Vice Sports. Retrieved from https://sports.vice.com/en_us/article/pgnqag/harry-­ edwards-is-building-an-institute-for-the-modern-athlete-activist on 8 August 2018. Sanderson, J., Frederick, E., & Stocz, M. (2016). When Athlete activism clashes with group values: social identity threat management via social media. Mass Communication and Society 19(3), 301–322. Schantz, O., & Gilbert, K. (2011). Exclusive arenas: The Paralympics and Olympics. International ­Council of Sport Science and Physical Education Bulletin 61, 1–18. Schinke, R. J., Stambulova, N. R., Lindor, R., Papaioannou, A., & Ryba, T. V. (2015). ISSP position stand: social missions through sport and exercise psychology. International Journal of Sport and ­E xercise Psychology, 1–19. Shakespeare, T. (2016). The Paralympics-superhumans and mere mortals. The Lancet, 388 (10050), 1137–1139. Smith, B. (2016). Narrative analysis. In E. Lyons & A. Coyle (eds), Analysing Qualitative Data in Psychology (2nd edn) (pp. 202–221). London: Sage. Smith, B., & Bundon, A. (2018). Disability models: explaining and understanding disability sport in different ways. In I. Brittain (ed), The Palgrave Handbook of Paralympic Studies (pp. 15–34). London: Palgrave Macmillan. Smith, B., Bundon, A., & Best, M. (2016). Disability sport and activist identities: a qualitative study of narratives of activism among elite athletes’ with impairment. Psychology of Sport and Exercise 26, 139–148. Smith, B., & Perrier, M. J. (2014). Disability, sport, and impaired bodies: a critical approach. In R. J. Schinke & K. R. McGannon (eds), The Psychology of Sub-culture in Sport and Physical Activity: Critical Perspectives (pp. 32–47). London: Routledge. Smith, B., & Sparkes, A. C. (2016). Interviews: Qualitative interviewing in the sport and exercise sciences. In B. Smith & A. C. Sparkes (eds), Routledge Handbook of Qualitative Research in Sport and Exercise (pp. 37–48). London: Routledge. Thomas, C. (2007). Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology. London: Palgrave Macmillan. Tibbetts, E., Longshore, K., Cropper, R., Lipsky, S., Brutus, A., Bonura, K. B., & Galli, N. (2017). Supporting the athlete in society: athlete-activism. Sport Psych Works 5(3). Townsend, R., Cushion, C. J., & Smith, B. (2017). A social relational analysis of an impairment-­ specific mode of disability coach education. Qualitative Research in Sport, Exercise and Health, 1–16. Townsend, R., Smith, B., & Cushion, C. J. (2016). Disability sports coaching: towards a critical ­u nderstanding. Sports Coaching Review 4(2), 80–98. Trevisan, F. (2017a). Crowd-sourced advocacy: promoting disability rights through online storytelling. Public Relations Inquiry 6(2), 191–208. Trevisan, F. (2017b). Disability Rights Advocacy Online: Voice, Empowerment and Global Connectivity. New York: Routledge.

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15 NAPLES IN THE HANDS Activism for aesthetic enjoyment Ciro Pizzo, Carmela Pacelli and Maria Grazia Gargiulo

Introduction The relationship between disability and art is conceptualised in ways which are not always mutually exclusive. The first is in terms of its rehabilitative use for persons with disabilities as occupation therapy. Secondly, Disability-Arts has always had a vibrant relationship in terms of arts’ use as political tool of activism and expression of disability identity and experience. Thirdly, there have always been concerns about the cultural representation of disability and how it has been ‘figured’ in museums, art and cultural heritage (Sandell et al., 2013; Garland-Thompson, 2017). Art, as a full expression of knowledge and expression of human thought, certainly for centuries has seen the emergence of disability as an object of representation or narration (Canevaro & Goussot, 2000; Delin, 2002; Gardou, 2015; Minority Reports, 2015). Attention has also turned to the physical access and enjoyment of aesthetic experiences, museum spaces and cultural heritage by persons with disabilities as participatory work of activism (Sandell et al., 2013), which is the focus of this chapter. In recent years, there has been a lot more attention given to the accessibility of art, museums and cultural heritage and a plethora of European studies in this area have been published which focus on all the senses, not just vision (Dodd & Sandell, 1998; Álvarez de Morales Mercado, 2013; Argyropoulos & Kanari, 2015; Mesquita & Carneiro, 2016). Museums have also become more socially and politically involved in challenging disablism, advocating particular models of disability (e.g. human rights) and rethinking the role of ­exhibitions or archives in light of, for example, eugenic or colonial pasts (Sandell, 2007). An important related topic is the protection of cultural heritage which is now also becoming correlated with an economic vision, given the growth of tourism and the activism of persons with disabilities in this sector (Fernández, 1999; Agovino et al., 2017). If you think of museums or other forms of collection of cultural heritage, for centuries persons with disabilities have been excluded as the subjects to whom these institutions are addressed. Within art in museums they have tended to be ‘objects’ of study or curiosity, together with other forms of humanity that can be locked up, exhibited and offered as ‘freak-show’ (Sandell et al., 2013; Garland-­Thompson, 2017). On the waves of claims of the legitimacy of identity differences and of requests for the social recognition of persons with disabilities, discourses of inclusion became more political even in the arts and museums (Ginsburg & Rapp, 2017), also 209

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in terms of cultural disadvantage or discrimination. In this way, a new possibility opens up that is broader than just accessibility or inclusion, and that is the possibility of constructing a space that respects differences and does not hierarchise ‘a priori’ the modalities of participation (Bollo, 2016). In this way, museums also ensure ‘cultural citizenship’ of persons with disabilities through participatory methods and disability sensitive inclusive practices ­( Pruulmann-Vengerfeldt & Runnel, 2019). In order to ensure a ‘disability cultural citizenship’ where there are diverse multiple possibilities of access to be shared, a central concern is a new form of participatory activism (Pruulmann-Vengerfeldt & Runnel, 2019). This is a form of activism which does not refer to ‘humanitarian logics’ typical, even today, of many projects (also of international cooperation) where basically nothing is done but to colonise the imaginations of the subjects belonging to groups recognised only on paper, but constrained to a forced literacy to speak the same language as the colonisers. Even if moved by a humanitarian spirit, that is the respect for human rights, the constant risk is an obliged sharing of transduction codes (i.e. providing translation grids that are bound for the aesthetic experiences of disabled people by the aesthetic experiences of able-bodied subjects) (Rieger & Strickfaden, 2016). Rieger and Strickfaden (2016) found that many of these codes and guidelines, in how spaces should be organised to be inclusive of disability, are almost always taken for granted. In this sense, participation and inclusion in museums and heritage studies leads to an activism that forms out of questioning how to decolonise this imaginary. In this chapter, our experiences are presented of how an Italian university based in the city of Naples, in order to open up and transform itself into a place to be able to include students with disabilities in all aspects of social life, got involved in activism about museums and art. The university has constantly promoted itself as an educational training place, encouraging students with disabilities to participate in the construction of cultural initiatives, not just in terms of leisure but also as a formative and emancipatory moment for awareness raising. The university was guided by the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006) in structuring its actions and practices. Students with disabilities built up a network that allowed them to form joint and coordinated activism and as a group, also built up new ways accessing the historical-artistic and the cultural heritage of the city. We also examine some of the strengths and limitations of using principles of universal design, in terms of accessibility of art and cultural heritage. We begin by elucidating how the Naples in the Hands network began.

Between participation and advocacy In 2002, the Italian University of Suor Orsola Benincasa located in Naples, in compliance with the CRPD (UN, 2006) and Italian legislation aimed at guaranteeing the right to university study for students with disabilities, set up a student disability office, called University Service for Students with Disabilities (SAAD), dedicated to the reception and support of all students with disabilities or learning difficulties. Since its start, the service has committed itself to the inclusion of students with disabilities, guaranteeing everyone the necessary support to complete their course of study and, more generally, participate in the life of the university. SAAD meet to plan students’ paths of study, ensure accommodations and provide specific needed training. For students with disabilities, enrolment at university represents a transition to the start of living independently and a springboard to a future career. Yet, this is in a context not always ready to welcome them, despite the fact that universities are crucial to

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start paths of personal awareness, empowerment, self-determination and freedom of choice (Associazione Treelle et al., 2011; D’Amico & Arconzo 2013; Censis, 2017). The analysis of these dynamics has allowed SAAD to reconfigure itself in terms of a space in which to start a reflection and a trial of inclusive and participatory activism, where a university can be a place for meetings, exchanges and relationships that contribute to the growth of all. The perspective is that autonomy and independence are important prerequisites for all students, and will improve social inclusion and emancipation. A student with disabilities must be able to express their needs and desires freely; and their inclusion in social life contributes to raising the level of quality of life for everyone (Barattella & Littamè, 2009). From these considerations, SAAD wanted to characterise their work in the direction of the development of independence, both in academia and in daily life. In fact, for every person, including those with disabilities, well-being is not only linked to the dimension of health, training and work but also ability to participate in culture, recreation, sports and enjoyment of free time. The need to improve the accessibility and quality of this leisure time is also underlined by Article 30 of the CRPD about ‘Participation in Cultural Life, Recreation, Leisure and Sport’ (UN, 2006). Leisure time is not an empty and heterodox period, artificially and arbitrarily filled, without the consent of the person concerned, but must be, ‘Without labels, without pathologies, without pietistic medical ghettoization, without the suffix therapy; free time for everyone’ (Bomprezzi, 2003, p. 32). In fact, all extracurricular activities that the university had arranged for students aimed to respond to the needs of all students to spend time with their peers and colleagues, as well as develop socially and academically. One aspect of leisure and recreational time that was troubling was the inaccessibility of museums and the cultural heritage of the city of Naples. Thus, a participatory and co-produced project was started in 2007 with the university. Students with disabilities and staff were proposing, as pioneers, to involve the city museums to collaborate to carry out experimental guided tours, attentive to the needs of persons with disabilities. Despite the experimental nature of the activities, the initiatives attracted great interest among all students, inclusive of those with disabilities. They stated that this was because they got the opportunity to recognise a common feeling of belonging that has its roots in the history and in the archaeological, historical-artistic and architectural heritage of the city of Naples. The presence, enthusiasm and curiosity of students with and without disabilities were to trigger a critical reflection with museums about both questions of accessibility and enjoyment. It was understood that the initiatives proposed to the students of the university could also be an opportunity for knowledge and socialisation for citizens and tourists with disabilities (Agovino et al., 2017), and that coordinated work was needed between the museums involved to improve the conditions of access to the beauty and cultural heritage of the city. From that initial project in 2007, the participation and number of museums has grown. This has led to the construction of practices and methods on which to base guided tours. Increasingly too, involvement of the associations has grown, reaching the point of the necessary formalisation of the collaboration. This happened in 2013 with a memorandum of understanding and the network was established as Naples in the Hands, coordinated by the SAAD. It wants to promote the enjoyment of heritage through methods focused on hospitality, multi-sensory communication and languages that are attentive to the needs of all visitors. It is the first formalised network in which universities, departments for archaeological, artistic and historic heritage, museums, cultural associations and associations of people with disabilities collaborate on an equal basis.

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Presently the Naples in the Hands network hosts eighteen museums, of which sixteen are present in the city of Naples. Furthermore, to facilitate the participation of disabled people not only as mere users of a service, formal membership of the network was attempted, by signing a memorandum of understanding, also for the major associations of and for persons with disabilities present in the region. These organisations include: Disabled People’s International (DPI) Italia Onlus; Association ‘DPI Territorial Committee of Campania’; National Deaf Organization – Regional Council of Campania; Italian Federation for Overcoming the Handicap of the Campania Region (Federhand / Fish Campania Onlus); Tutti a scuola Onlus, Provincial Section of Naples of the Italian Union of the Blind and Visually Impaired (UICI); and Onlus, Provincial Section of Naples of the Italian National Union pro-Blind Volunteers (UNIVo.C). Each of these organisations contribute with their experiences, professionals in the sector, their ideas and their supervision for the construction and validation of specific museum itineraries, in addition to the dissemination of initiatives and the enlargement of the network. Joining the network, all partners demonstrate that they have a clear expertise of complexity of the issues of accessibility, that have to be reconciled with regard to the possibility of combining the protection of historical and cultural heritage with enjoyment for people with disabilities. Solima et al. (2018) explain that accessibility consists not only of physical barriers but also cognitive, economic and digital barriers. We would add to this and explain that psychological and cultural barriers are also important to consider. That is, the set of stereotypes and prejudices, which lead us to think without knowing the state of things; that art is not interesting for or, inevitably, is precluded to persons with disabilities. Therefore, the project, in its practical application, testifies not only that access to and enjoyment of cultural heritage by all is possible but also ensures that the public is engaged to overcome any negative and stereotypical considerations about the participation of persons with disabilities in cultural and social life in keeping with their rights (UN, 2006). The network activities include, in addition to the design, research and dissemination of this culture of accessibility, the training both of the staff working in museums and of university students who want to deepen their knowledge of projects aimed at promoting enjoyment of the heritage, from the point of view of universal design (Steinfeld & Maisel, 2012). Universal design is defined as, ‘the design of products and environments’ so they can be used and accessed by everyone without the need for any accommodations (Steinfeld & Maisel, 2012, p. 28). For this reason, within the protocol of the organisation of the network, for all students enrolled at the university free participation in guided tours are proposed on a monthly basis, and this is with the aim of fostering positive exchanges with visitors with disabilities. The museum becomes a sort of laboratory of innovation, in which students with disabilities develop skills, for example, in providing strategies and solutions to ensure art and cultural heritage is accessible to a diverse audience (Karp et al., 1992; Fernández, 1999; Dodd & Sandell, 2001). For the students it is about formative moments of skills training necessary to employment and from the personal point of view, also improving ability to relate to different people from all over the world. Among the many achievements this training is the most important, because it confirms the intuition from which the activities of the SAAD started. The training of students with disabilities requires stimulus, diversification and constant opportunities that encourage their growth as active citizens in a society that often forgets, or underestimates, their needs. Becoming an active spokesman of one’s rights is closely linked to personal training, also according to the perspective of the life-long learning, aimed at the acquisition and development of

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skills and competencies for the conscious and critical participation in every moment of life (Striano, 2014). What started is certainly a long path and we acknowledge that we cannot eliminate all barriers, because, as Shakespeare (2014) says, a world without barriers is a utopia, since accessibility does not depend only on the context but also on the impairment. So, it is not enough to respect legislation on the elimination or overcoming of architectural barriers in every context but it is necessary to contribute to the promotion of positive social provisions that can mitigate certain exclusions. These considerations reinforce the work of Naples in the Hands and represent an important incentive to realise greater spaces of inclusion and acceptance. From this point of view universal design has certainly represented a turning point, since it has tried to build codes of use and usability of objects and places that help the participation of the general public in leisure and recreational activities. It seems really crucial to dwell on further issues of access to art, museums and cultural heritage, in terms of not only general accessibility but also economic cost and elitism as barriers (Dodd & Sandell, 1998). We will focus on what universal design means and how that is translated in guidelines and practices with persons with disabilities.

Universal design and new museology Even if legislative norms cannot guarantee ‘a world without barriers’, they are certainly necessary to regulate, direct and support all actions aimed at overcoming them, especially in the field of museum, art and cultural heritage. Although the Italian reflection on the accessibility of cultural heritage begun in the 1970s and the body of legislation produced on this issue can be considered, even by European standards, among the most modern and complete, we do not always find its proper application because protection and conservation activities have long prevailed over those of ‘exploitation’, understood as accessibility and enjoyment of the cultural heritage, thus denying access to and enjoyment for many citizens, especially persons with disabilities. In fact, obstacles are constituted by both tangible and intangible barriers, which stand between individuals and places of culture. Art and museums were for long time conceived and identified as inaccessible because they were reserved for an elite and were economically expensive places (Dodd & Sandell, 1998; 2001; Sandell, 2002). The visit of a museum presupposes a set of costs not attributable solely to the price of the entrance ticket, but also concerning mobility and the retrieval of information necessary to plan the visit and experience appropriately. From the analysis of national and international regulations, issued by the UN, United Nations Educational Scientific and Cultural Organization (UNESCO) and the European Commission (EC), the concept of accessibility is strengthened because it is indicated as a priority in the actions promoted by the states for the enhancement of cultural heritage in an inclusive perspective. In this context, it is obligatory to quote the CRPD (UN, 2006) which highlights right to accessibility as well as leisure and recreation in the general principles in Article 3, Article 9 on accessibility and Article 30 which we have already mentioned. Furthermore, in the Italian regulatory context, a turning point on the issues of accessibility is represented by the ‘Code of Cultural Heritage and Landscape’1 that puts in relief the importance of the enjoyment of assets, by persons with disabilities, ensuring, perhaps for the first time, within an inclusive and participatory vision, the universal right to enjoyment of the cultural goods. Yet, it was only with the publication of the ‘Guidelines for overcoming architectural barriers in places of cultural interest’2, drafted by the ‘Commission for the analysis of disability issues in the specific sector of cultural heritage and activities’ which highlighted

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the possibility of combining the protection of heritage with the right of enjoyment by people with disability. In this perspective, the guidelines provide those, who in various ways and in different roles are dealing with the protection and enhancement of cultural heritage, the opportunity to research and experiment – also during restoring, re-equipping of museum rooms or even in the preparation of temporary or permanent exhibitions – alternative solutions to allow access and enjoyment to all people. These guidelines have given a new interpretation to the very rooted idea that overcoming architectural barriers is simply a regulatory obligation. They illustrate that accessibility can go far beyond the design of ‘ramps’ and ‘toilets’, thus going beyond not only the stereotype of persons with disabilities seen only as a wheelchair-users, by adding and extending the meaning of accessibility also to the reception, orientation, correct lighting, the legibility of the labels and all cards, to the points of refreshment and so on. Accessibility is not to apply rules and regulations but, on the contrary, it means to put in place a system of reflection that ensures persons with disabilities are the centre of attention with consideration for their characteristics, necessities and needs, to conceive and build liveable and usable spaces (Napolitano, 2009). Accessibility involves interdisciplinary knowledge because it implicates different disciplines such as architecture, museology, museography, studies of museum visitors, educational approaches, exhibition organisation, pedagogy, disability, digital and game studies, to support strategies which are suitable to respond to the diverse needs and desires of people, even from a multigenerational point of view (Agostiano et al. 2009). In 2016, the Italian Ministry of Heritage, Culture and Tourism considered it necessary to integrate and update the guidelines with a new document ‘Recommendations on the accessibility to museums, monuments, archaeological areas and parks’ which collects considerations of a working group composed of experts in the field of accessibility to ‘strained’ heritage, to foster the culture of welcoming the public, which for social dynamics is increasingly diversified by needs, habits, interests and learning styles. The experts in the document underline the importance of studies in the field of ‘audience development’ that consent not only to understand how to strengthen the objectives of quantitative growth in the demand for culture, but above all to intercept and involve new audiences to access places of culture, especially those people, who for various reasons, are discouraged by cultural, social, economic and physical barriers. The 2005 Council of Europe Framework Convention ‘The Value of Cultural Heritage for Society’3 affirms that the knowledge and enjoyment of cultural heritage are part of the rights of citizens to participate freely in the cultural life of the community and enjoy the arts. It invites states to promote participatory exploitation processes, based on synergy between public institutions, private citizens and associations. In fact, the Naples in the Hands network concretises these suggestions because through the extended partnership of universities, museums and associations, it promotes processes of democratization and open government. Furthermore, the participation of citizens and communities is key to raise awareness of the value of cultural heritage and to support actions aimed at improving accessibility, especially for young and disadvantaged people. The museums of the network Naples in the Hands not only have implemented the legislation and all the indications to offer solutions that are attentive to the needs of visitors but have become concrete places in which to develop dialogue and to implement systems aimed at respecting the many differences that characterise people. Through the wise use of access, communication, participation and representation strategies, the museums have to remodel their spaces but also have a mission for social inclusion according to the principles of universal design (Steinfeld & Maisel, 2012). For all, the attempt is to look at the reality through 214

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new filters, changing the design formats in a participatory, critical and reflective sense and assigning ethical and moral value to the enjoyment of cultural heritage as a common good (Garofalo & Conti, 2012). As stated above, this design model is neither perfect nor can ensure an inclusive environment, (i.e. totally devoid of any kind of barriers for all potential users). It appears in many respects still utopian. This is what Shakespeare (2014) emphasises, as an environment cannot be accessible for all potential users, because disability is experienced in an individual way and therefore requires diversified accommodations which are often incompatible or an obstacle to other disabilities. The removal of architectural and communication barriers is easier than the social and economic ones, that most affect the lives of those who are marginalised, and therefore play a major disabling role. Universal design, despite its limitations, is a methodology that drives its application beyond the field of architectural barriers and is important for critical reflection on different types of accessibility (Steinfeld & Maisel, 2012; Buzzelli, 2004). Therefore, the Naples in the Hands network offers guidance using a methodology inspired by universal design, mediating the relationship between persons with disabilities, the museum environment and artwork through multi-sensory courses, attentive to the needs of all, using alternative communication systems. In fact, the first requirement of museums who ask to join the network is to meet certain physical accessibility features such as the presence of elevators, ramps, availability of wheelchairs, ample space for movement around the exhibition cases, bookshop, refreshment points and parking. Secondly are to ensure other accessible features, such as techniques used for guided tours, proven over the years inspired by principles of universal design, using identified narration and multisensory stimuli as an opportunity for all visitors to experience art and cultural heritage.4 Additionally, there is also what we called a ‘narrative dimension’, a narration that, through different sensory codes, creates a level of encounter between the various participants in the museum space. The narrative dimension is built through dialogue, evocation, imagination and intrigues in order to keep the attention of an audience for knowledge and needs diversified; that means to enrich speeches with anecdotes, readings, music, visual props and ideas to better tell the past. This multi-sensorial storytelling allows proposing inclusive itineraries because an accurate narration and description of the works also allows, for example, the visually impaired visitor to access knowledge of characteristics of masterpieces. In fact, the stories provide a presentation of, for example, the tours, architecture, collections, paintings, sculptures, bronzes and objects of furniture realised with varied materials. This allowed museums to overcome the stigma of the enjoyment-related ‘Do not touch’ existing in places of art, allowing for persons with disabilities the awareness of the museum through the tactile exploration of features of an exhibition or heritage, such as sculpture (Secchi, 2006; Grassini, 2015; Hatwell, 2006). The narrative dimension, combined with exploration, can be said to be relatively simple if for example sculpture is being accessed. It becomes more complex in presence of a painting, in which the data must be read by scanning and in close correlation with the narrative, urging participants to reconstruct, through the imaginative and evocative dimension, from a story, pictures, things, objects, places and ways of life, using words that can make as explicit as possible the content of the works, as well as explaining all the technical terms, formal and architectural styles. For this reason, in some museums of the network are present organisations that represent people with visual impairments or ‘blind’ people to translate and advise. In general, for the realisation of media such as paintings, we make use of experts who create a clay model and then a fiberglass structure, or similar, which reproduces the 215

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two-dimensional image of painting. Some network museums sought alternative solutions that would also be effective for the communication of the pictorial work because creation of such reproductions was not without cost. For example, the Catacombs of San Gennaro,5 used tactile tables depicting the frescoes preserved in the catacomb environments. These were created by an artist, shaping materials such as iron, copper and zinc. In choosing what to depict, there was a consultation with persons with disabilities who selected the most interesting frescoes and identified the main elements to be depicted. During construction of this reproduction, a series of tactile checks was carried out, enabling to make the necessary changes for maximum readability of the work by touch. We point out that at the Catacombs, the tactile tables are part of and enrich the usual tour path. They are also for visitors without visual impairments to use senses other than sight. Museums of the network always ensure that ‘blind’ or visually impaired visitors have an appropriate number of original works to explore, sometimes through the use of thin gloves, or in scale reproductions, or, in the presence of paintings, perspective reliefs. Various museum exhibitions are also accompanied by descriptive cards whose contents have been reorganised according to a narrative logic that uses a simple language, involving in this way an audience of non-specialists. The cards, scanned and available on the website dedicated to Naples in the Hands, is a valuable aid for D/deaf people who, in some museums of the network, may also require the presence of an interpreter of Italian Sign Language (LIS) that accompanies them or makes use of technological devices, such as a tablet or App, which ­reproduce in LIS or captions the description of the works. The opportunity to use in the museums, different languages and types of visits that can be combined together, especially when visitors have complex disabilities, makes a visit a multi-sensorial and multi-dimensional encounter. To enjoy an artwork or historical space is not just to look, observe, listen but also to move, manipulate, touch, tactile read; all actions that allow different bodies to enter in contact with the art and cultural heritage to critically understand its historical and artistic significance. The Naples in the Hands network does not propose museum activities only during special events, but it allows everyone to decide independently, to book their own visit when it suits them. In this way, the disabled traveller or tourist, maybe together with family or friends, can draw an itinerary that will allow them to learn about the artistic beauty of the city of Naples and the Campania region. Naples in the Hands, in these terms, might be the nucleus around which to organise and consolidate accessible tourism services, because the goal is to overcome the medical logic of rehabilitation in favour of a vision of participatory, co-­ produced and playful leisure. There is no doubt that collaboration and cooperation can be of great benefit to everyone because it allows you to implement good practices with new forms of communication. In addition, the experience of Naples in the Hands shows that associations and organisations for and of persons with disabilities, can in a collaborative relationship, make an important contribution not only to identify the of needs and expectations of persons with disabilities but ensure to the identification of solutions and strategies that can lead to innovation of a new museology.

Conclusion The experience that has been built, born in agreement between the university, students and museums of the network is gradually being widened and is becoming an important moment, with a growing role played by students and former students. Over the years, in fact, we have strengthened our work to create tours for D/deaf and D/deaf blind people and for people with 216

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various mental health conditions, verifying with the people themselves their preferences and feasibility of new itineraries that reinforce awareness and knowledge. The activism of disabled people’s organisations and students has led to the experimentation of employment paths, still underway, and the planning of creation of economic activities. This is still a pilot project, but we are starting to see a leading role played by students with disabilities, with the ability to create guidance to strengthen their autonomy. Ultimately, the role of the Naples in the Hands network was to ensure activism for participation and co-production of accessibility so that everyone could enjoy art, museums and the cultural heritage of the city of Naples. This is an ongoing activism for aesthetic enjoyment and experience of cultural citizenship which everyone has a right to.

Notes 1 Code of Cultural Heritage and Landscape – Legislative Decree 22/01/2004 n. 42 and subsequent amendments and additions. 2 Ministero per i Beni e le Attività culturali, Guidelines for the elimination of architectural barriers in places of cultural interest, Ministerial Decree of March 28, 2008. 3 Council of Europe – (CETS N °. 199) FARO, 27.X. 2005. 4 For an example, see the Bourbon Gallery: http://www.galleriaborbonica.com/en/tours/ disabled-people 5 The catacombs of San Gennaro are a massive ancient underground cemetery site decorated with beautiful images of Christian saints and religious figures. The catacombs are famous for having hosted the relics of the Christian Saint Gennaro.

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16 PISSED OFF! Disability activists fighting for toilet access in the UK Charlotte Jones, Jen Slater, Sam Cleasby, Gill Kemp, Eleanor Lisney and Sarah Rennie Introduction The toilet is a political place. The labels on its doors intentionally include some and exclude others, whilst the space, design and facilities themselves permit certain bodies, needs and actions, and forbid others. Access to a toilet away from home is not only about gaining entry to the cubicle; toilets also grant access to wider community, public spaces and opportunities. The toilet teaches us who is welcome and who is expected. This chapter is about disability activism which focuses on the toilet. We begin by outlining various forms of recent disability toilet activism in the UK. Modes of activism are conceptualised in a broad sense here: from artistic endeavours; to parliamentary lobbying; social media interventions; personal conversations; and direct action. Toilets are stitched into our wider social and material relations, thus strategies for change are multiple, divergent and symptomatic of wider political and p­ ersonal differences. Toilets are often utilised as an exemplar for social justice claims. The demands of disability activists, for example, do not start or end with the toilet, but toilet access illustrates their broader claims to recognition and social value, and against physical ­barriers to their use of space and to perform bodily functions. Although it would be impossible to offer a comprehensive list and evaluation of the full and eclectic range of toilet activism, we do spend some time considering contrasts and tensions between disparate approaches. Such a discussion gives context to, and is followed by, four personal accounts from disability and toilet activists and campaigners. The introduction to this chapter is written by Jones and Slater from our position as researchers on the Around the Toilet project (AtT). AtT is a cross-disciplinary research project based at Sheffield Hallam University, funded by the AHRC Connected Communities programme and involving researchers and community organisations based across the north of England. The project started in April 2015 with an aim to explore what it means to classify a space as ‘accessible’ and the various ways in which toilet spaces can be inadequate, uncomfortable and unavailable for some. The work began through engagement with queer, trans and disabled people, but has since expanded to include others who have experienced toilet exclusion. Using arts based practices, such as participatory workshops involving sculpture, storytelling and performance, and working collaboratively with architects and designers, we produced various creative outputs, including comics, films and a zine, a self-published 219

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collaboratively-written mini-magazine ( Jones & Slater, 2018), all of which are available at aroundthetoilet.com. We also produced academic publications (Slater et al., 2016; Slater et al., 2017; Liddiard & Slater, 2017; Slater & Liddiard, 2018) and a project report (Slater & Jones, 2018). Whilst the toilet has been a focal point for the project, the conversations that we have had are broad: who are buildings designed for? Whose bodies and ways of being b­ ecome normalised and valued through the design of public space, and thus, who is welcome and expected in particular places? Whose bodies and ways of being subsequently become ­Othered; and at what cost? Whilst this chapter concentrates specifically on disability activism, AtT approaches these questions from a variety of perspectives. We follow Kafer (2013) in viewing toilet access and activism as a fruitful place to begin building solidarities between social movements, and we stress the importance of considering disabled people’s multiple and intersecting identities, including the ways in which the marginalisation of different ­social groups is often co-constituted and overlapping (Patel, 2017; Schmidt, 2013; Slater et al., 2017).

Cutting out the toilet Threats of violence, discomfort and marginalisation for trans, queer and disabled people transcend the toilet. These experiences sit within a wider context of racism, austerity cuts and capitalism. In the UK, austerity measures have included cuts to public funding which disproportionately impact disabled people (Garthwaite, 2011), especially disabled women of colour (UK Women’s Budget Group, 2017). Austerity has also led to closures of toilets formerly financed by local authorities (Penner, 2013). Public toilet closures particularly affect already marginalised people, including, but not restricted to, disabled people. For example, AtT research found that the increasing scarcity of toilets has particular repercussions for people whose conditions or impairments necessitate urgent access to toilets (Slater & Jones, 2018). A growing reliance on private provision (e.g. in shops, bars and restaurants) means that less attention is often paid to accessibility (Greed, 2011; Slater & Jones, 2018). The paucity of public facilities can prevent older people, many of whom may be disabled, from leaving the house (Help the Aged UK, 2007; Knight & Bichard, 2011). As toilets can provide a rare moment of solitude, their reduction also results in fewer places for care and rest for people with mental health needs (Slater & Jones, 2018). Public toilet closures and an upsurge in ‘pay-to-use’ toilets are also especially detrimental to homeless people, creating further divisions within communities, as homeless people are positioned as ‘problems’ for urinating and defecating on the streets (National Assembly for Wales Health and Social Care Committee, 2012), as well as having particular implications for homeless people that menstruate (Vora, 2016). Of course, disabled people do not lead single issue lives, and they often fit within other categories or groups who are also particularly affected by austerity. As Rennie and Lisney point out later in this chapter, disabled and non-disabled women may need longer and more frequent access to public toilets as they are more likely to be caring for others and/or dealing with menstruation and menopause than people of other genders. Access to toilets and access to wider social care are not discrete problems, but wrapped up in broader ideologies regarding whose bodies and ways of being are valued. In opposition to cuts to social care, Disabled People Against the Cuts (DPAC) highlight that when budgets for personal assistance disappear, so too does disabled people’s basic right to make choices, including when to use the toilet (Forrester, 2017). Serlin (2010), in agreement with DPAC, notes that toilets have been an important site of wider disability activism. He observes that a lack of suitable toilet facilities and/or personal assistance at protests, particularly occupations, has meant that toilets have become an important symbolic and material marker of disabled 220

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people’s exclusion from some forms of direct action, and the public sphere more broadly (Serlin, 2010). As we discuss in the next section, toilet provision can be perceived as an indication of who is expected and valued in a space (Titchkosky, 2011). Facilities are supplied to suit the needs of those deemed ‘typical’ and important.

(De)valuing the accessible toilet As we have shown, accessible toilets are limited in number and not always easy to find, but they are also the first to be repurposed. Throughout AtT we asked people to tweet photographs to us of good, bad or interesting public toilets using the #cctoilettalk hashtag. Numerous contributions have shown accessible toilets turned into bins, storage or staff rooms, and no longer fit for purpose. This is a physical reminder to disabled people that they are not expected or welcome in these venues. Other research participants have noticed that, even when considerable effort has been put into making the gendered (and particularly women’s) toilets a pleasant experience, accessible toilets are often clinical and bland. Many do not have mirrors at wheelchair height, if they have mirrors at all. The medicalisation of disability has been widely critiqued within disability studies (Zola, 1972) and activism (e.g. Hearing Voices Network, 2018), and the clinicity of the accessible toilet arguably adds to this context. Upon finding an accessible toilet with decoration which conformed to the scheme of the building, one AtT research participant said that this consideration helped her to feel included and wanted in that space. There is also a gendered dimension to this design decision. ­Underpinned by sexist stereotyping, a sensorily pleasing toilet experience is considered more important for women. Thus, some disabled people’s desire to attend to their physical presentation whilst in the toilet is discounted, reifying a discourse whereby disabled people are not gendered or sexual (Thomas, 1999; Wendell, 1996). As a response to this, some have started taking accessible toilet decoration into their own hands: for example, during an Arts Council funded Architecture-InsideOut workshop, a Changing Places toilet at the Tate Modern was transformed into a ‘miniature baroque palace’ (Boys, 2014; Boys, n.d.). The planning of an accessible toilet often appears to be a tick-box exercise rather than a considered design decision. Over a three-year study, Hanson et al. (2007) audited UK toilets, and failed to find any facilities that conformed to the best practice guidelines. Artist Ju Gosling photographs red alarm cords in accessible toilets as part of her project, ‘No Hope of Rescue’ (Gosling, 2017). Alarm cords should hang to the floor in order to be reachable if a person falls whilst in the cubicle. Gosling’s ever-growing series of photographs shows cords which have been tucked behind pipes, made shorter, or cut off altogether. For Gosling, the collection highlights that emergency systems are a commonly illusory requirement, with no expectation of use. Freely available ‘Red Cord Cards’ (Euan’s Guide, 2015) have also been designed for people to attach to defective emergency cords upon finding one in an accessible toilet to explain the importance of a fully functional and appropriately positioned alarm cord system. Thus, facilities which are intended for the access and support of disabled people often need to be monitored, examined and rectified by the disabled people making use of them. However, these toilet ‘audits’, as we discuss in the following section, are not only performed upon the facilities, but also the occupants.

Different signs Accessible toilets, like gendered toilets, are subject to social monitoring and regulation, and request a process of self-identification with the label on the door. Identifying as disabled in 221

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the UK is socially, politically and emotionally charged (Wendell, 1996), and situated by various ways of defining disability, concerns around pathologisation and diagnosis, and potential stigmatisation. Not everyone with an impairment or health condition considers themselves to be disabled. However, categorisation can also be a way of ‘receiving the acknowledgement and confirmation of his/her reality’ (Wendell, 1996, p. 12), thus suspicion or doubt regarding authenticity when using accessible toilets can be detrimental. People with invisible impairments or medical conditions have spoken to us about feeling guilty or under observation when using accessible toilets due to the ‘conflation between the radical diversity of embodiment and the single iconic figure of the wheelchair user’ (Titchkosky, 2011, p. 81). As Kemp and Cleasby discuss later in the chapter, disabled people not using wheelchairs can be judged by others as less deserving of the accessible toilet. This is exemplified by the relief many disabled people have shown in response to signs recently added to the doors of accessible toilets, which explicitly welcome disabled people whose impairments may not be perceptible to others. A toilet sign designed by ten-year-old Grace Warnock, who has Crohn’s disease and experienced ‘dirty looks’ and people ‘shaking their head’ when she visited the accessible toilet, led to ‘Grace’s sign’ campaign (Swerling, 2015). Grace’s sign depicts ‘female’ and ‘male’ toilet logos with red hearts on their chests, alongside the wheelchair-user/‘accessible’ logo. The sign has been introduced in a range of locations in Scotland, including Parliament. ‘Not every disability is visible’ signs (Crohn’s & Colitis UK, n.d.) also spread across UK supermarkets and other public toilet facilities in 2017, following charity campaigns.

Changing places and contested campaigns Even when toilets are functioning, ‘accessibility’ can be characterised in a range of ways, especially as the minimum legal requirements do not take into account many people’s needs (Women & Equalities Committee, 2017). A sign by the Changing Places Consortium (CP) highlights this when it states that, ‘not all wheelchair users can self-transfer’, due to the scarcity of toilets with adult changing beds and hoists (sometimes known as ‘Changing Places (CP) Toilets’). Several participants in the AtT project spoke of the need for more CP toilets. One user discussed having to leave her role as a junior solicitor as there was nowhere for her to use the toilet in her workplace. Two parents of disabled children discussed the extra organisation and planning that had to go into a day out with their family due to a shortage of CP toilets. On some occasions this prevented them from leaving the house altogether. CP use various campaign strategies, encouraging supporters to engage with social and other media, participate in ‘stunts’ to raise awareness, write letters to MPs and businesses, and write guest blog posts. Other participants in AtT have highlighted that campaigns such as CP, which are sponsored by large disability charities, are inevitably flawed as they work from a charity model of disability, which tends to portray disabled people as deserving of help and pity, and may not be led by and for disabled people themselves. Critiques of CP exemplify larger debates within disability studies and activism around the role of non-disabled parents of disabled children (Ryan & Runswick-Cole, 2008) and charities (Fulcher, 1989) within disability activism. The popular and high-profile CP branding is used at will by individuals who support the campaign, which means that endorsement from the ‘official’ consortium is not always discernible. One of the most visible campaigning techniques attached to the CP label is the photographic documentation of children being changed on dirty toilet floors in lieu of a suitable changing bench, shared by the children’s parents on Twitter and Facebook. Whilst these photos may have a strong emotional impact, the ethics of this strategy have been 222

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questioned. The Accessible Toilets Project, an online accessible toilet resource, criticises the campaign for sharing ‘undignified’ images of children and young people without their consent: ‘[ j]ust because dignity was lost in being on the floor doesn’t mean the indignity should be extended by their image being shared’ (The World of Accessible Toilets, 2016). The Accessible Toilets Project also points out that as the campaign often focuses on those who use sanitary pads, it can alienate disabled people who need the hoist, but do not use pads. In her essay below, Rennie highlights that because the campaign is dominated by parents of disabled children, CP toilets appear more often in ‘family’ venues, rather than in locations more readily frequented by disabled adults. CP campaigns thus highlight the differing, and sometimes contested, strategies used by toilet activists.

Choosing tactics As well as implementing a variety of activist tools and tactics, the other contributors in this chapter highlight the importance of speaking more freely about toilet inadequacies in order to address stigmatisation. Paralympian and wheelchair-user, Anne Wafula Strike, echoed this point when she spoke out publicly and received national press coverage (Taylor, 2017; BBC News, 2017) after riding on a CrossCountry train which had no accessible toilets, leaving her to urinate in her seat. She commented that her decision to address this publicly ‘despite the personal humiliation’ was due to a desire to ‘bring about change for other people with disabilities’ as they ‘suffer in silence when this kind of thing happens because they feel too embarrassed to talk about it’ (Taylor, 2017). Whilst Wafula Strike made an important contribution to raising awareness of this problem, the expectation of advocacy and the emotional labour involved in continuous divulgence may feel onerous. This type of labour is almost always unpaid, often unrecognised, usually expected of marginalised groups, and may involve disclosures which feel personal (Campbell, 2012). Furthermore, ‘choosing’ to speak out (or indeed protest in other ways) is always mediated by context. For example, in 2015 another British Paralympian, Susi Rogers-Hartley, was forced into the position of staging a ‘dirty protest’ when she was refused access to a petrol station toilet at 3am. She resorted to urinating in the garage forecourt and, to make her point, chose to position herself in front of the CCTV camera. She said: ‘I was absolutely desperate so I told [the Attendant] I was going to go outside, she said ‘you wouldn’t, there’s CCTV cameras’ so I said I would, and I did and I made sure I did it right in front of the cameras’ (Smith, 2015). Rogers-Hartley described the act as ‘just one of those things when you’re out in the wheelchair’ (ibid.), a position in which an inability to perform an everyday need in comfort led to both a form of self-preservation and of refusal, or ‘political warfare’ (Lorde, 1988). As Ahmed (2014) writes, ‘[w]hen you are not supposed to live, as you are, where you are, with whom you are with, then survival is a radical action’. Toilet protest is often interwoven into personal lives, and therefore enacted with urgency, not always planned ahead, and in some cases politicised only with hindsight. This chapter discusses only a handful of strategies used to campaign for more accessible toilets and address current inadequacies. They demonstrate the breadth of disability activism: whilst some seek adjustments and call for ‘inclusion’ within the current system; others position toilet access as part of wider ableist discourse and practice, and fight for radical, structural and behavioural as well as attitudinal change. These actions are often taken as part of an everyday imperative to live, to work, and to get about. With this context in mind, we now turn to Sarah Rennie, Gill Kemp, Eleanor Lisney and Sam Cleasby to explain their experiences of toilet (in)accessibility, disability and toilet activism. 223

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Bursting the balloon – Sarah Rennie Toilets have affected my life choices and ‘toilet activism’ has powerfully influenced my ­politics. I cannot walk, stand or side-transfer from my wheelchair. Therefore, standard ­accessible toilets don’t work for me because their design assumes that I can. There is neither a hoist to transfer, nor a bench to lie me on to pull up my trousers. At home and at university, I had access to a suitably designed ensuite bathroom. Out and about in standard accessible toilets, my super-strength Mum would take my bodyweight in one arm and pull my trousers up and down with the other. She’s 65 now and still does this, which worries me. Aged 12, my friends Pip and Shiv devised the ‘lift and shift’ manoeuvre to enable me to use the loo on long days or nights out. It’s sort of like a scene from the Chuckle Brothers but with my ass in shot. It goes like this: Shiv starts by shouting, ‘I’ll lift, you do pants!’ She picks me up with in a cradle lift with one arm under my knees and the other around my back, supporting my head. Pip pulls down the trousers, Shiv lowers me onto the loo and I wee. Then Shiv scoops me back up whilst Pip squints to locate the pants and trousers, coordinates the release of Shiv’s grip on me in order to yank the lot up whilst simultaneously trying to avoid punching me in the ‘Cumberbatch’. We must complete the exercise before Shiv turns purple. Good friends at university learnt the ‘lift and shift’ ­m anoeuvre which kindly enabled my rite-of-passage student drinking years. The trouble really started for me in the world of work. A ruthless corporate billing environment doesn’t look kindly on 30-minute toilet trips, and working away from the office would mean 15-hour stretches without the toilet. The Health and Safety Executive would have me banged up if I allowed my support assistants to use the ‘lift and shift’ manoeuvre. I therefore felt I had no option but to change careers and become self-employed. Whilst I rescued my health, it was at this point I started to get angry about toilets. Around this time, I became involved with Sisters of Frida, an experimental collective of disabled women. One of my first public-speaking events on its behalf was on a panel called ‘Toilets are a Feminist Issue’. I explained how the issues of toilet accessibility are impacted upon by both disability and gender. The audience was supportive. I realised that it was a subject matter everyone could relate to and it was refreshing to connect with a non-disabled audience so naturally. On the panel (and every event thereafter) I listened to older women, trans women and women of faith articulate similar experiences of pain, discomfort, exclusion, shame and discrimination. This was to shape my politics forever. I became aware of Changing Places toilets in my mid-twenties. These facilities include a hoist, changing bench and plenty of space. There are now hundreds around the UK, often in shopping centres and giant supermarkets. There is no legal requirement for their inclusion or national strategy for their locations. As they are often installed after lengthy campaigns by the parents of disabled children, you often find the facilities in family-oriented places. The problem is that I can hardly say to a client ‘could we stop the meeting for a couple of hours whilst I jump in a taxi to use the loo at the local petting zoo?’ Further, the standard places you find them (e.g. shopping centres, town halls and swimming pools) close at 6pm and not when I need the loo around 11pm after a session in the pub. Wherever non-disabled people need to access a toilet, disabled people do too. As the facilities cost thousands of pounds and must be funded by the building owner, we usually need to present a business case for the expenditure. The first barrier, as adults, to making that case is that we are discouraged from talking about going to the toilet. To correct the misunderstanding that standard accessible toilets are usable by all disabled people, we need to explain why this isn’t the case. This may need to involve terminology like ‘knickers’ 224

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or ‘wiping’. We are no longer children! As adults we are conditioned to keep these experiences private, burdened by shame and fighting to be seen as sexual beings. This pressure usually successfully silences us. I am therefore trying, at great cost, to speak out about my experiences factually at events, on social media and in daily conversations. Each time I speak about it, it feels like bursting a balloon of stigma. This process forces me to think critically about the objectification of women and the stereotypes around disability and sexuality. As a teenager, if I was ever embarrassed needing to be wiped after using the loo my Mum used to say, ‘don’t forget: even the Queen has to poo’. I remind myself of Her Majesty whenever I feel pressure to be embarrassed talking about toilet injustice. In my activism life, it helps to remember that shame about necessary human bodily functions is patently absurd; toilets are designed for, provided for and policed by the privileged few; and shame is used to silence us. This silence leads to the second barrier for disabled adults like me: if we’re not talking about our struggles, our numbers are unknown, and our collective purchasing power isn’t ignited. I am trying to establish an experimental network of disabled professionals in my city. One of reason for this is that I have a selfish dream that networks of this kind could pop up across the UK and demonstrate the need for these facilities in the adult world. Who knows if it will work? One day I may even boldly livestream a toilet trip with my ‘lift and shift’ buddies on the internet to wake people up to what ‘exclusive design’ really does to us. But, for now, I’m just going to have to keep popping those stigma balloons and have one brave conversation at a time.

Breaking down barriers – Gill Kemp Until an illness left me with Irritable Bowel Syndrome (IBS) it did not occur to me to check whether toilets were available when away from home; I just assumed that they were. That aura of blissful ignorance was dispelled when I found that having IBS meant I could hardly venture out before warning gurgles had me flying back to the house. From then on I vowed only to go out if I knew of toilet locations. IBS, like a variety of other medical conditions, is ‘invisible’ and sometimes the ‘disabled’ toilet is the only option in an urgent situation which has led me to come face to face with unwelcoming comments. However, the attitude towards me now when I use the accessible toilet has changed dramatically because, due to a mobility problem, I use a walking stick! This has highlighted the dilemma of those with ‘invisible’ conditions who need the space of the ‘disabled’ toilet but people can’t see why. Having an ‘invisible’ condition encouraged me to establish Public Toilets UK (PTUK), a campaign to improve access to toilets for everyone. PTUK also raises awareness of current toilet provision and offers support and information on public toilets issues.

The dilemma of the ‘disabled’ toilet Thanks to charities such as Crohn’s and Colitis UK, an increase in the use of an additional sign on doors to accessible toilets reminds us that ‘not every disability is visible’. This is a major step forward; but why is it necessary? And is this enough? Should we still be dividing people into ‘abled’ or ‘disabled’ when we need the toilet? A locked toilet is exclusive – think how many of us have to use a RADAR1 key to gain entry to the accessible toilet. A gendered toilet is, for many, also exclusive for various reasons. For example, taking a male child into a female toilet (or vice versa) can cause embarrassment 225

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and comment, and using the accessible toilet may also be problematic because of entrenched attitudes. An accessible toilet for those of us with certain requirements is a lifeline but until the additional new signage becomes widespread, the current signage is not viewed as ­‘inclusive’. On the other hand, it is worth noting that a Changing Places facility is recognised and accepted as ‘exclusive’ to mainstream users as it has specific equipment such as a hoist for those needing additional assistance, thus enabling them and their families to be ‘included’ in their desire to get out and about.

Is it time for change? The policy to divide toilet areas into Ladies, Gents and Disabled has been with us a long time and a large proportion of the population do not wish this to change; but what does this say about our society when ‘abled’ toilets continue to be divided by gender and ‘disabled’ toilets are mostly non-gendered? There are long standing arguments on this subject but with public toilets closing at a rapid rate throughout the UK we really do need to consider the future. In some areas where facilities have closed, Community Toilet Schemes (CTS) have been introduced whereby shops and public buildings allow use of their toilets without the need to make a purchase. Participating establishments are paid by the Council to cover the costs of additional supplies and maintenance which avoids the expensive maintenance of toilet blocks. For the scheme to be successful there has to be good signage and up-to-date information on availability. The type of facilities on offer may be less than the Council originally provided and unsuitable for some users. However, with proper management, could a CTS be the way to ensure the availability of toilets and a means of encouraging a society where everyone is welcome?

People power! There has been a positive increase in the number of action groups who have successfully fought to keep their facilities open or have them reopened; many of which are the gendered style alongside a separate accessible toilet. It is also encouraging to note that in some areas Councils have listened to their public, recognised the importance of toilets and have funded brand new facilities; some of which are gender neutral. However, whatever the age or design of the toilet, maintenance and cleanliness are particularly important to the public alongside useful opening times. ‘People Power’ is certainly on the rise and hopefully, with encouragement and determination, will continue to be successful in increasing toilet availability. However, what is really needed is for toilet provision to become a statutory requirement. That would make a difference to us all.

Talking toilets with one voice Unfortunately, until we all talk freely about toilet provision in the UK, progress will be slow and closures will continue to affect both our mental and physical health. The need for public toilets to encourage us to leave our homes for work and leisure are consistently ignored by Government and local authorities who have the capability to make a difference. Public Toilets UK is an example of a campaign to raise awareness of the impact of toilet closures. The realisation that we should speak with ‘one voice’ if the current situation is to change, contributed to the recent formation of the Toilet Consortium where charities and other organisations have begun to work together to break through the barrier of our currently ‘exclusive’ society. 226

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Refusal and exclusion – Eleanor Lisney From a very young age, I learnt how to restrain my bladder functions. My classroom was upstairs, and the toilets were downstairs at my primary school, and the school day lasted eight hours. When I was a child growing up in Malaysia, we had an outdoor squat toilet that we shared with all the other tenants. A squat toilet is basically a ceramic ‘hole in the ground’ where you can plant your feet, one on each side, to then appropriately do your business. I have always admired people who can read while they are doing this! As a child, I was given a spittoon type of container as an alternative; potties were not available then. That also needed careful manoeuvring. It became more and more difficult to find suitable toilets, so I was happy when sit-down toilets appeared in my life. However, I remember when visiting China with my family, I discovered that not only were squat toilets the only facilities available in public toilets, some of them were also open planned (and separated by gender). Total strangers asking if they can help me in public toilets – albeit with the best of intentions – became one of my top humiliating experiences. Women have complained about the paucity of toilets for them in many places but for disabled women, it can be even more of a nightmare. I know when I am with a group of disabled women friends, the topic of conversation usually turns to the subject of accessible toilets. It is often disconcerting for non-disabled friends in the group, especially for those who do not understand how that can be a worthy conversational topic, but for us it is a very important access requirement. In a gathering of friends, there is bound to be consumption of liquid, whether it be tea or alcoholic beverages, so it goes without saying why availability of an accessible toilet is so relevant. In my role providing advice on travel and accessibility, I often need to research the availability of accessible public toilets. We nearly missed the Eurostar back to London once because I insisted on going to the only place I knew which had an accessible loo, and then could not find the bus stop to take the bus back to the Gare du Nord. Due to the lack of suitable toilets on airplanes, my own airline travels are now somewhat curtailed by the travel time on the plane, or else I self-impose dehydration. My activism includes insistence that I travel on planes with accessible loos like the Virgin Atlantic, such as when I was invited to Washington DC to a conference on museum accessibility. It can be difficult to explain this access need even when it is an event about access. Luckily, in this case they did not question it. How do you explain the refusal to travel because you would not be able to use a toilet on a long-distance flight? My sister lives in California and this is exactly why I have not gone to visit her there. I could have a stopover flight, but every stopover increases the chances of my power wheelchair being mishandled during unloading and uploading. Any anxiety and stress caused outweighs the pleasure of seeing family it seems, and this is often very hard to comprehend for my relatives. When I had a stall at Coventry Market selling independent living aids, I did some research on aids that can help disabled women when they travel, things like the ‘shewee’ (https:// www.shewee.com/), a urination device marketed for women. They might work for some non-disabled women or women who can stand, but not for wheelchair users or those who have mobility issues. I maintain that it is still easier for most cisgender men, including disabled men, to have a pee than a disabled woman. It is not just the privacy that is needed, or the fact that the dimensions need to be big enough to accommodate the wheelchair for transfers, but hygiene is also important for women as a toilet seat would often come into contact with flesh – this is not always the case where most men are concerned. 227

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As a member of Sisters of Frida, a collective of disabled women, I have been invited to speak on panels such as ‘Why Toilets Are No Joke for Women’ at the Women of the World (WOW) Festival at South Bank in London. In addition to the issues I have mentioned above, the lack of accessible toilets is more than an inconvenience: it means being excluded from social, community and professional events. It is not just being able to pee but also the times of the month when we menstruate, and it gets messy. Cultural taboos around menstruation most often impact women, even though not all women menstruate due to some medical reasons, and not only women menstruate.2 One of the reasons we founded Sisters of Frida was because we saw the gap where disabled women’s issues were not mentioned or voiced either by disabled people’s organisations or women’s organisations. It is not a great leap to link the provision of toilet facilities to health, and such services as part of being inclusive into mainstream society. The recent concluding observations from the United Nations Committee on the Convention of the Rights of Persons with Disabilities (CRPD, 2017) were that disabled women and girls’ rights ‘have not been systematically mainstreamed into both the gender equality and disability agenda’ and they recommended the adoption of ‘inclusive and targeted measures, including disaggregated data’ to prevent the multiple and intersectional discrimination disabled women and girls face. We are currently advocating for a friend who has been isolated in a care home because her Local Authority has not afforded her to have accessible accommodation using a direct payment, which would allow her independent living with choice and control. She has high level needs including hoisting for her toileting needs. For that reason, she was put in a care home with much older residents, where they refuse visits from her friends. While I moan about the difficulty of finding accessible toilets in social spaces like restaurants and in the workplaces in the UK, it is never far from my mind that it is much worse for our sisters elsewhere, where there is a lack of toilets in general, which curtails their ability to access education and work. There is one public accessible toilet in my home town, I was told. I have not been there for a few years. I cannot imagine what it is like for less developed countries or for refugees, or those in war torn countries or disaster areas.

Speaking out – Sam Cleasby When I wrote an open letter to the people who tutted at me for using an accessible toilet, I never for a minute expected it to go viral. Almost two million views later and after thousands of messages of support, I realised just how important an issue this is to so many people. I have a condition called Ulcerative Colitis. I have had seven surgeries to date and I have a permanent ileostomy. Ulcerative Colitis causes pain, diarrhoea, bleeding and urgency and so it’s fair to say that for the past 13 years, my life has revolved around toilets. I became a bit of a toilet expert. I can name you every public toilet on most routes around my home town. If I were going on Mastermind, my specialist subject would be toilets. This is a bit of a joke I tell at dinner parties (because yes, I am that person who talks poo around the table) but the reality is that without access to toilets, specifically accessible toilets, my life would be pretty miserable and I would be housebound. I started my blog, So Bad Ass (www.sobadass.me), almost five years ago to have a platform to talk about my illness and it quickly found a huge audience; an audience of people who needed to know that they aren’t alone. It is a bit of a taboo subject – talking about poo, toilets and disability is not everyone’s idea of a fun read – but it was important to me to be open and honest about all aspects of my chronic illness and the very real effects on my life. After my post about the judgement we face when using an accessible toilet as a non-­wheelchair user, I decided to start a campaign called More Than Meets the Eye to raise  awareness 228

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of the many people with an invisible disability and their needs for accessibility and support in society. I was overwhelmed by the response. It wasn’t just people with Inflammatory Bowel Disease who got in touch, it was autistic people, people with cancer, ME, Tourette’s and dementia, to name but a few. The heart of everything on my blog is about kindness, openness and acceptance and I was proud to hear from not only the people who have faced the judgment but also the people who have been the ones doing the judging. People got in touch to say that they were unaware that accessible toilets were needed by so many different types of people, and that when they saw someone who wasn’t a wheelchair user going to the toilet they thought it was someone who was taking something they didn’t need. Education is key to moving forward, so to be able to teach society about disability and chronic illness is so important for creating a society that is accessible. Accessible toilets are not truly accessible for all, and companies need to address this issue. The campaign by Changing Places to see more toilets with large changing areas and hoists shows the real-life problems faced by people who need support to use the toilet or to change continence pads. They use images of people being changed on a dirty toilet floor to highlight the need for changing benches, asking the question, ‘would you like to lay your loved one on a public toilet floor?’ There are simple ways that accessible toilets can accommodate more people, for example having a shelf and hook to place ostomy products whilst you change your bag would be a massive help. When I use an accessible toilet in a business that could be improved I do make a point of speaking to staff and management about how they can improve their facilities. These conversations need to happen more; we need to speak about and educate the people making decisions about the needs of customers. When I wrote about being tutted at, laughed at and mocked for using public accessible toilets, I was filled with hurt, anger and sadness. I felt small and humiliated. I wanted to stay at home safely away from harsh words and unkind people and I didn’t want to share my experience with the world. But I am so glad that I made a stand, in opening up and speaking about this event that crushed my spirit, I found a way to take that pain and make a difference, not only for myself but for the many. It still happens now. I have faced similar events over the years and I think I always will. I look like a non-disabled person and unless I flash my stomach, you would never realise the many issues and impairments that I have, but the difference now is inside. I have found the strength to speak out, not to shout, but to have those difficult conversations, to find kindness in my heart to speak to those who hurt me and to try and educate them about disability and chronic illness. Shaming people doesn’t work, it only hurts and so having conversations on a human level with a lot of understanding and patience is how I plan to move forward, I will never stop talking about these issues. I gained the nickname ‘the poo lady’ and I carry that moniker proudly!

Notes 1 RADAR keys, also known as NKS keys, can be applied for or bought online and offer people independent access to locked accessible public toilets across the UK. They are predominantly aimed at disabled people, although they are also used by some non-disabled people. 2 For example, some trans men and non-binary people menstruate. Gender is not an indicator of anatomy.

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17 MOBILITY-AS-OCCUPATION Non-confrontational activism in Trinidad and Tobago Sylette Henry-Buckmire

Introduction This chapter describes how neoliberal choices made by the status quo, in the context of the history of Trinidad and Tobago (T&T), have shifted social and infrastructural support systems impacting on disabled bodies. It seeks to ethnographically foreground disability on the move, occupying and being occupied, while interrogating existing power hierarchies that affect mobility and occupation. T&T are the two southernmost islands located in the ­Caribbean archipelago, and as its Caribbean counterparts, having survived the imperial ­remains of the colonial epoch, reveal themselves in postcolonial life as sites rife with mobility and occupational injustices, racial hegemony, and neoliberal exigencies, evidenced through structures of power. Departing colonial powers left histories of domination, and economic exploitation over black and brown bodies. They inculcated through systems of governance attitudes of dependence on the state which are so entrenched in local society that they ­restrict demonstration of personal agency. These systems of governance have been adopted in postcolonial T&T by indigenous leaders who continue to perpetuate these attitudes of state dependence. Brown and black bodies embodied capitalist production and became bodies of difference within the colonial system. Today, persons with disabilities live on the periphery of society, just as darker bodies in the colonial epoch occupied society as outliers. There has been a shift of the players: from the empire, colonial office and plantocracy to darker, indigenous bodies in management roles in more contemporary times. And still, the empire remains in the form of exploitative transnational capitalist organisations and entities embodying neoliberal logic providing technical assistance and financial support. What remains unchanged are the hegemonic social structures that re-enact policies and practices of mobility injustice and occupational apartheid, impacting the lives of persons with disabilities. This occurs in much the same way as the colonial vanguard through legislation and normalising practices stymied mobility and occupational choices of the African ex-slaves and the Indian indentured labourers. Persons with disabilities are also body-minds that have been historically marked, ostracised and rendered culturally, politically and socially invisible (Price, 2011). The marked body in its ephemeral state then becomes the site on which sovereign control over personal mobility and occupational choice occurs. 232

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There have been few ethnographic disability studies (DS) in the Caribbean region (Leavitt, 1992; Braithwaite, 2015). Most studies on disability have been impairment specific and a medical focus still dominates. One Trinidad-based study addressed disability issues from a feminist perspective (Huggins, 2003) while other studies focused on mental and developmental disabilities (Maharaj & Konings, 2005; Njelesani et al., 2015) within an educational context. These studies lacked a more interpretive perspective, which I argue a DS framework offers. DS reinterprets disability from the deficit medical model centring human variance as an individual burden, to a politically, historically, socially and economically constructed category. DS scholarship places the focal point on the disabled person’s daily experiences, as a naturally occurring social phenomenon. In this chapter, I briefly present the historical context of T&T from the imperial era and the leaking of the capitalist colonial into the neoliberal contemporary. Then the ethical and feminist ethnographic practices I adopted to inform my study are described followed by a close look at how neoliberal assumptions unfold in the everyday lives of persons with disabilities. I explain the creation of meanings of mobility and occupation (Block et al., 2016) as well as an empirical concept that I introduce: mobility-as-occupation (MAO). I begin by elucidating some of the background to MAO in the Caribbean region.

Historical context of the Caribbean The economic and socio-historical context, in which the Caribbean was manipulated, as a microcosm of the worldwide economic market during colonialism, heavily impacted all island territories to varying degrees. This historical capitalism planted the seed for the implications of the neoliberal agenda evidenced today in T&T (Stewart, 1994, p. 3; see also Wint, 2003; Ramkissoon-Babwah, 2013) in describing the economic conditions of the Caribbean, argues that: From its birth in the sixteenth century, historical capitalism needed, and still needs for its very existence and for its nurturing and growth, a periphery. The Caribbean is the oldest and most intensely penetrated part of the periphery and in its history one can discern and map the maturing of the capitalist historical system. Stewart (1994) describes the history of embodied capitalism from the cruel expulsion and genocide of indigenous peoples, forced mobility of African peoples subjugated to slavery, as well as indentured labourers from India and, to a lesser extent, the movement of the Chinese and Portuguese during the post-emancipation era, to work. Unwittingly, the Caribbean and its worker-producers were all part of an international system in which the nation-states of the region were raped of natural resources to meet growing demands of the metropole. Thus, historically, the Caribbean region has been shaped to be ‘low value-added producers’ (Stewart, 1994, p. 11) for countries of the global North. Historical records indicate that the colonisers privileged and prioritised particular bodies to participate in demeaning occupations and used multiple overt mechanisms including legal, social and other actions to equally maintain control over non-European bodies while justifying their cultural superiority. The commodification of bodies, for slave labour as well as for indentureship on sugar cane plantations parodies the contempt that the hegemonic powers of the day held over bodies they considered ‘deviant, dangerous and disposable’ ­( Erevelles & Minear, 2010, p. 4). A former colonial authority, Lord Harris, was quoted as saying that African ex-slaves and Indian immigrants were not: 233

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fit to be placed in a position which the labourers of civilized countries may at once occupy. They must be treated as children - wayward ones too - the former from the utter savage state in which they arrive, the latter from their habits and religion… (Ramsaran, 1993, p. 4) Thus, the Afro-Trinidadian, and the Indo-Trinidadian, were relegated to occupying only ­ignominious spaces and occupations in history. The underpinnings of colonial society still linger in the postcolonial epoch. Stoler (2016, p. 169) argues that the imperial dregs, ­‘demands specific and located histories of the present that retain the complexities and ambiguities of colonial entanglements.’ The legal and social constraints that were cultivated to maintain dependency established during the colonial era have been maintained in contemporary times. While T&T is viewed as a developing country, it has been negatively affected by the downward trend in global economy. T&T has an economy that is linked strongly to oil and gas, which has meant it had to take out loans from the IMF in the 1980s when prices fell. T&T was also affected when austerity hit in 2008 and further fluctuations affected the commodities markets. R ­ iddell (2003) argues that there has globally been a move from, Keynesianism economics to neoliberalism. Neoliberalism is defined as a set of economic policies and supporting ideas with an economic and social agenda tied to the free market economic policies, privileging individualism and private enterprise (Connell, 2010). While the neoliberal agenda is touted to be beneficial for globalisation, many scholars (Riddell, 2003; Connell, 2010; Braedley & ­Luxton, 2010) argue that it is has been negative, resulting in large scale growing gap between the rich and poor (Braedley & Luxton, 2010). The realignment of the country’s resources away from the people through, ‘currency devaluations, removal of subsidies and an emphasis on the export sector’ (Riddell, 2003, p. 596) siphons out the best that the country has to offer to meet neoliberal loan conditions such as the 1980s Structural Adjustment Programmes (SAPs) demanded from the World Bank and International Monetary Fund (IMF). The SAPS because they were heavily criticised for implementing free market policies were later ­replaced by Poverty Reduction Programmes. Chouinard (2014, p. 342) argued that the Guyanese economy, similar to its neighbour T&T’s, was, ‘dependent on the exploitation and export of natural resources (…) and the import of expensive finished goods’. The neo-colonial and neoliberal effects on society were particularly deleterious, producing impairment as neoliberal World Bank and IMF ­programmes required privatisation which, ‘severely limit state capacities to provide social services and supports’ (Chouinard, 2014, p. 322). At the macro-level, the legacy of these SAPs continues to impact the adequacy of social services provision. Melville (2002, pp. 7–8) reporting on the most significant period of ­structural adjustment occurring in T&T states the: Government’s approach to reigning in its expenditure, attempted to minimise the social impact. Mass public sector retrenchment was avoided and employment was reduced through the introduction of voluntary separation employment packages (VSEP) and by natural attrition; the wage bill was lowered by a freeze on salaries and actual salary cuts. Nevertheless, many workers suffered a decline in real incomes through decreases in nominal income and rises in prices and many fell below the poverty line (…) Spending on the social sector declined and this adversely affected their operations. (…) Social programmes up to 1993 were ad hoc and not focused on providing immediate relief to the dislocated persons… 234

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As such, the scene painted articulates with verity the lack of focus on social support programs which particularly affected poor people and rural communities. I explain how I investigated the impact of these policies and the types of social support mechanisms used by persons with disabilities in what follows.

Mobilising ethnographic methods and methodologies Feminist ethnographic practices were used during fieldwork conducted from May to ­October 2017 in T&T. Ethics approval was given after a rigorous review processes by Stony Brook ­University’s institutional review board (IRB). Since this research project was conducted outside of the USA, extra precautions were taken to ensure methods were developed and fieldwork conducted in a manner that reflected ethical, legal and cultural appropriateness. Critical to this process was confirming that all research participants were able to understand the nature of the research and provide consent. I used snowball sampling, beginning with a participant from an initial pilot study who directed me to other persons with disabilities whose health status limited their personal mobility significantly (defined by self-assessment) or who were at risk for falling. I engaged a diverse range of adults sampling for differences in gender, ‘race’/ethnicity, class, age and so on. Excluded from the study were persons living with cognitive or intellectual impairments and those who were unable to give consent. Feminist research interrogates the source of knowledge production for women, and those otherwise marginalised, confronts hierarchical power and supports political activism as it argues for social justice (Hesse-Biber et al., 2004). Exploratory in nature, one key goal of the study was capturing the subjective experiences of persons with disabilities as it pertains to understanding mobility and occupation. The first component of the fieldwork comprised the face-to-face in-depth interviews, introduced to each of my thirty-five research participants as a ‘conversation’, recorded through note taking and audio-recording. These conversations lasted on average 130 minutes with the use of a semi-structured interview guide. The second phase, the completion of the travel diary within two to three weeks by participants, was used to capture the lived experiences and personal narratives of my interlocutors at their own pace. This led them to reflect on and document memories of everyday mobility and occupation. I also provided them with the context for articulating their own journeys through co-creating a map of T&T’s major towns in ways that are uncommonly known. Those who participated in this phase of the study received a USD $15 incentive. In a third phase, the empirical concept of ‘becoming mobile’ was introduced. This was an interactive mobile ethnographic-influenced method that featured my interlocutors in public spaces, as I drove them to places of interest (free of cost), and accompanied them as they navigated desired spaces, taking on the role of a care attendant (loosely). As such, these trips of ‘becoming mobile’, lasted about five hours on average, and were used to complete activities such as cashing disability cheques and grocery shopping. The process of becoming mobile, a spontaneous change to the go along method (Castrodale, 2018), offers anthropology and other social science disciplines a fresh way of interacting with research participants in the field. My movement with my interlocutors, always keeping a step behind, supporting them as they interacted with the world in their everyday allowed me opportunity to closely examine existing hierarchical power structures. ‘Becoming mobile’ varies from the go-along method in that as I became mobile with them, moving with them in the streets, I made jottings of events and attitudes in real time and questions arose informally, either to clarify an event from the preceding interview or linked to an unfolding event on the field, followed by a de-briefing period afterwards. This debriefing occurred in 235

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a conversational manner allowing the interlocutor to share perceptions of the day’s events as well as researcher-interlocutor interactions. I contemplated my own insider/outsider status as an ally to disability communities and how that potentially influenced my interaction with my interlocutors. I was mindful that I was both an ‘outsider’ and an ‘insider’ in the T&T disability community. That is, I am a citizen of T&T, and am familiar with cultural norms and mores. However, I am a non-­ disabled female, of African descent, with a tertiary level education who interviewed both men and women whose lives are marked by varied societal categories such as: racial/ethnic backgrounds, physical impairments, sexual orientation and class differences. Thus, I was intentional in my engagement with my interlocutors to reduce potential power dynamics. Next, I describe how persons with disabilities negotiate their own mobility and occupation within society and in tandem with state regulations.

Persons with disabilities negotiations versus state manoeuvrings How can we contextualise the everyday life of a disabled person living in a neoliberal environment in the global South? Within western culture, disability is portrayed as both ­ignominious and deleterious (Linton, 1998). One of my interlocutors, Amy1, a brilliant, articulate thirty-six-year-old visually impaired business professional was made to feel as an outcast when she visited a store in the capital city of T&T, Port of Spain. She noted that as she entered the store, she announced her presence with a vocal, ‘Good afternoon’ while waiting for her own eyes to adjust to the dimly lit store. She realised (more by hearing than by seeing) that a clerk was nearby attending to another customer and she waited. When the clerk became available, Amy made her request repeatedly to the clerk, who refused to answer. The cashier, realising what was happening, asked the clerk to source the item of interest. Thereafter, rather than giving my interlocutor the requested item (since she was nearby), the clerk handed the item directly to the cashier, ignoring and bypassing Amy. Connell (2011, p. 1370) sums up this sidelining as, ‘the power of social processes to create hierarchies of bodies, exalting some and abjecting others, has been shown.’ Additionally, physical barriers and inadequate infrastructure immobilise disability communities. This is evidenced in The Elderly and Differently Abled Mobile (ELDAMO) Bus Service in T&T. Stiker (1999, p. 63) asserts that the ‘social order recognizes the challenge of alterity yet cannot accept it’. Hence, in the T&T context where the Public Transport ­Service Corporation (PTSC), a state agent, provides vital transport services (twenty-four buses ­a ltogether) for the disability communities. ‘It worked for a while then the whole process (…) fall apart’, says Emma, a thirty-six-year old interlocutor and former user of the service. She chided: I have been using the ELDAMO bus service for years. When you call them, they say they have no drivers, no bus, or they will tell you they coming and you will get dressed and nobody shows up. (…) They tell you nothing. She reveals the inefficiencies of the system, and the lack of courtesy extended to her and others like her as though they are without personhood. While on paper the state makes transportation available, this service is neither accessible nor reliable and in effect serves as a disruption rather than a contributor to mobility and occupation. By these actions, the state demonstrates that provision of efficient transportation services and empowering disabled persons to meet their occupational needs is not a priority. 236

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A level of ambivalence seems to prevail given the existence of a disability policy that has not yet become law. While the state must be commended for drafting this first disability policy since 2005, and has engaged a cross-section of stakeholders, there seems to be a lack of political will to move it to the next step. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) was ratified in July 2015 and the state, through the Ministry of Social Development and Family Services and the Disability Affairs Unit (DAU), in keeping with United Nations commitments, has begun policy review for the first time since the initial drafting. T&T has, since post-independence, been considered to have a welfare state system. Examples of such social benefits that may ‘profit’ disability communities include the provision of the Disability Assistance Grant (‘the Grant’), the ‘Food Card’ and the Geriatric Adolescent Partnership Programme (GAPP). That the state has provided this safety net seems commendable. However, individual efforts targeted at social mobility and self-reliance by persons with disabilities already accessing the Grant are met with punitive state counter-measures. Within T&T, the state, through the DAU, provides oversight for social service delivery to the nation’s disability communities. A senior government official admits that several gaps exist within proffered services. Touted as providing services according to a charity model (by an interlocutor who works within the DAU), this senior official identified weakness in the system, noting that the state lacks an effective system of monitoring those in receipt of the disability grant. To qualify for this benefit, one must be labelled disabled and unfit to work by PHC system doctors, who serve as gatekeepers and earn no more than TTD $12000 (USD $1788) per year. This yearly stipend that some PwDs may be able to obtain, in addition to the grant of TTD $21600 (USD $3219) per year, is insufficient to meet fluctuating inflation effects on food, and other consumables, progressive health conditions, inordinately high house rental rates and other everyday demands. Additionally, this grant is reduced and may be removed if the recipient is living in a household with other employed persons. The everyday effects of neoliberal logic places responsibility on the individual and the family for caregiving despite extenuating circumstances such as debilitating chronic illness progression, resulting in greater resources funnelled into care provision, with less finances entering the home to offset these demands. Simultaneously, economic restructuring and state cuts to social services, such as the grant, already insufficient to meeting the demands of persons with disabilities, have affected their lives and wellbeing. This circumscribed access, in part is epitomised in Price’s (2011, pp. 201–203) ‘un/able paradox, which reflects a bureaucratic and rhetorical paradox’. Here, the disabled recipient of disability benefits is banned from gainful employment but needs it to access health insurance to address progressive health issues. Charity-based state-funded initiatives abound, such as the Targeted Conditional Cash Transfer Programme (TCCTP), otherwise known as the ‘Food Card’. Marketed as a shortterm food assistance and development programme targeting vulnerable persons and families, it is widely recognised as a ‘handout’, but service users including persons with disabilities accept it due to the high cost of living. The development component of this program was never implemented. Another programme, GAPP, provides government-trained/-sponsored healthcare to needy citizens, inclusive of persons with disabilities. Heavily subscribed by this cohort, the GAPP was closed, in an interview with a senior state official, because, ‘the provision of such services was not as comprehensive as desired to appropriately meet the complex needs of its varied clientele’. Sadly, in the state’s neoliberal mindset, rather than support disadvantaged service users, the programme was annulled due to its restrictedness. Rather, the state forced its neoliberal logic on denizens, who, being physically/economically/psychically and socially disadvantaged, are unable to access these services offered in the private sector. 237

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There is a gendered component in the grant administration process. A genuine fear of losing grants exists among my female interlocutors. Several revealed that they actively chose not to carry their spouse’s name (a cultural trend in T&T) because they surmised that doing so will cease receipt of grant income. Therefore, no economic capital (since most of my interlocutors’ primary source of income is ‘the grant’) is synonymous with passivity and curtailed independence. If the authorities knew these physically disabled women received financial support, they would be stripped of grants. As such, they used their maiden names in all their business transactions with the state to retain access. This fear was tangible as no genuine inquiry was made about the burden of care for the disabled person within the family unit. Thus, the state’s measures are punitive and exacting, since they provide these social benefits, but remove their efficacy through other means. While there is a growing shift in T&T society from attaching negative value to persons living with disability, progress is slow. Persons with disabilities living within this context daily resist the oppression inherent in living with a label which evokes tragedy and alterity. This marginalisation is witnessed in the everyday activities comprising mobility and ­occupation. In this next section I consider how my interlocutors perceive mobility, and ­occupation in their daily lives and what the novel construct of ‘mobility-as-occupation’ means to everyday activism.

Mobility Mobility can be understood as a resource that is unevenly dispensed. Thus, embedded within this mobility resource spectrum are those that will be hypermobile, on the one hand, and immobile on the other. Key to the concept of mobility is its political nature. Cresswell’s (2010, p. 18) definition identifies mobility as: ‘The fragile entanglement of physical movement, representations and practices’. Mobilities research thus contextualises this juxtaposition of the intensities and rates of movement, representations and practices with correspondingly embedded power structures (moorings) that often result in friction, stasis or unequal access to infrastructures, spaces, opportunities and technologies (Hannam et al., 2006; Jensen, 2010). I approached the production of mobility as integral to space and power ( Jensen, 2011), to examine how power relations intersect with purposeful movement, enabling some to move freely but denying equal movement to others. Here, my interlocutor Kiwi, a free-­spirited twenty-two-year-old artist, living with cerebral palsy and scoliosis, ­illustrates how the lack of personal power negatively impacts her desired mobility leaving her to experience immobility. Kiwi described: So, I been looking forward to this day for a long-time. It was my nephew’s second birthday and my family and I were heading to Clifton beach (…) I couldn’t move my chair in the sand as expected from past experiences with the beach. (…) I basically sat where they put me unless I asked to be moved. (…) They got a chair for me [to] sit and put it under the shower because the doorway was too narrow for my wheelchair to pass. There was a step to go into the little shower room. Not a normal kind of step but it’s basically designed to keep water in and disabled people out. Thus, not only was her physical movement constrained, but so too was her agency now transformed to one of dependency. Her present immobility, an aide-mémoire of past moorings, is a blunt reminder of the relationality and situatedness of disability. There is a disruption in terms of Kiwi’s personal mobility freedom on the sandy shore. The non-functionality 238

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of her mobility device is juxtaposed with the hopes she kept alive while anticipating the day out. Her mobility desires were further restrained as she states: ‘Being in the sea is technically difficult for me because I become completely helpless. My mom had to constantly be holding me up.’ Her longing to sea-bathe for an extended period was quickly curtailed by the reality of non-existent material supports. Kiwi’s forced passivity correlates with Ghai’s (2001, p. 27) analysis of persons with disabilities who, ‘live in eternal childhood, where survival is contingent upon constant care and protection, thereby reinforcing the charity/pity model’. Likewise, the provision of care was fulfilled according to gender-differentiated roles, with her mother providing familial care and support as Cresswell and Uteng (2008, p. 3) contend, ‘Feminine mobilities are different from masculine ones. What’s more this difference acts to reaffirm and reproduce the power relations that produced these differences in the first place.’ In the next section, I focus on occupation.

Occupation The concept of occupation echoes mobility, and Occupational Therapist and scholar Ann A. Wilcock (Wilcock 1999, p.4) defines occupation as a tripartite concept of doing, being and becoming. She considers that doing: provides the mechanism for social interaction, and societal development and growth, forming the foundation stone of community, local and national identity, (…) to the ­extent of national development or to achieve international goals. (Wilcock 1999) Applied to the everyday, ‘doing’ entails completion of tasks in which people gain enjoyment from participation. According to Wilcock (1999), ‘being’ refers to one demonstrating their authentic self to others while ensuring that this individuality is reflected in all that you do. Jamie, a vibrant and longstanding educator at sixty-nine, is beginning to lose her sight and experiences severe nerve pain because of diabetes. On ‘doing’, she reminisces in her travel diary: My vision has been affected by the diabetes; therefore, I am not able to drive myself anywhere. Also, walking by myself is a challenge. I know my home well so there is not a problem moving about… but in other places I am hesitant to venture out because of a fear of stumbling. Here, she describes the mundane activities that consumed her everyday life but that these activities are now placed on the back burner because of her chronic health condition. Notably, her own mobility is implicated to occupation since she is unable to drive herself. On ‘being’, Jamie becomes reflective in her thoughts as she shares: Compared to my active life before I got sick, because I was not able to walk as briskly as I did before, they [family members and members of her faith community] assumed that I was on my way out. They probably felt that my next step was death. However, I felt, and still feel, that the Lord must have something left to do with my life, otherwise He would have cut [it] short… I am so grateful and thankful to Him. At this stage, Jamie reveals that her being, her identity is tied into her faith relationship with the Lord, who has preserved her for another purpose. 239

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Fidler (1983) considered three component parts of becoming, namely ‘i. Becoming I; ii. Becoming competent, and iii. Becoming a social being. In all these scenarios becoming holds the notion of potential and growth, of transformation and self-actualization’ (Wilcock, 1999 p. 4). Becoming suggests a sense of futurity, of potentialities, of imaginings, but also of uncertainties. That occupation has the power to frame one’s future, this future necessarily demands one to politically and strategically create opportunities for continued access, continual interdependence through relationship building, and applying one’s resources in ways that will promote health and wellbeing for bodies that are aging and becoming more complex due to disability. Jamie’s ‘becoming’ is tied into the assumptions people made. She confides: all my life I have been an avid reader and this vision problem has greatly limited my ability to read as I would like. In fact, I have to depend on people to read certain signs, labels, prescriptions, messages on my phone, among other things – the worst of which is that I have to depend on audio bibles in order to do my daily bible reading or even to participate in church activities as I used to. Her struggle for, and acquiring, a new subjectivity works in tandem with her shift in mobility (Cresswell & Uteng, 2008). This fear of becoming completely dependent on other persons and assistive technology represents to her a moving away from her authentic, competent self, resulting in a loss of self-identity and a departure from desired occupation. Having positioned mobility as an unevenly distributed resource and occupation as a triangular notion that combines doing with one’s identity and sense of futurity, I bring these concepts together for the empirical notion of MAO.

Mobility-as-occupation Mobility-as-occupation (MAO) is more than just the composition of its constituent parts. As a taken-for-granted category, it reflects the political, processual and relational embodiment within and between the disabled body-mind and the immediate environment. MAO refers to the material and psychic transformations of agency and power that occurs within the personal/liminal spaces of embodied experiences in relationship to what one desires to do. This notion capitalises on the permeability of the borders between mobility and occupation and encourages reflection on how my interlocutors’ differential mobilities, as influenced by bodily abilities and physical capacities influence and serve to accomplish their occupational desires. Jaya, a fifty-four-year-old woman with cerebral palsy, was fully dependent on her husband as her primary caregiver, thus framing her engagement with him within a politicalgendered framework. In sharing her narrative, she focused my attention on her physical capacity, ‘When I see couples going on picnics, I get frustrated. I will like to do that too. I get frustrated that my body is so stiff.’ Her sense of wellbeing was intimately tied into her physical capability and her desired occupation. In terms of MAO, her unique and embodied practice of movement (mobility) that occurs simultaneously with the embodied transformational process of occupation: going on a picnic (‘doing’), getting frustrated despite mental and emotional desire – (creation of identity, ‘being’) because of the existing physical bodily ability (present and future ‘becoming’). MAO also takes on a more intimate relationality, an introspection of sorts, of one’s embodied capacities for movement and requirements for occupation. That her mobility was 240

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intimately entangled to her husband made her feel ‘caged’. As such, her frustration may have been palpable because she depended solely on her spouse-caregiver for her mobility capability and to meet the occupational demands stymied by his continuous fatigue, as she described him as: ‘Tired. Always tired.’ This critical look at MAO is expanded in the next section to uncover its nexus to confrontational and non-confrontational activism.

Mobility as confrontational and non-confrontational activism Disability justice and actions for social change are variable, at different times as it engages diverse members of the collective. One example of confrontational activism occurred in 2002, then again in 2005 under Mr George Daniel, then President of the Trinidad chapter of Disabled People’s International (DPI). Mr Daniel was well known for staging a 116-day protest he held outside the National Flour Mills to highlight discriminatory employment practices in relation to disabled workers back in 2002. While MAO does not discount the effects of social inequality and stratification, this concept serves to act within these structures to examine new ways of thinking about disability and inequitable access and the inherent, bodily efforts required, by Mr Daniel and his supporters, to engage in meaningful participation in activities, as well as the opportunity to ‘become’. Gooptar (2017, p. 58) noted that Mr Daniel’s protest involved: Case law, most notably; George Daniel v the Attorney General of Trinidad and Tobago (2005) (…) its invocation of Article 4 of the Constitution and the message the claimant’s victory sent to the state, disability community and wider society. This legal victory represented access to justice, in which he claimed he was unable to access the Hall of Justice, the oldest and most significant courthouse in Port of Spain, because of the long flight of steps at the front of the building (Trinidad Express, 2010). Non-confrontational activism (NCA) adopts an equally political and creative nature, with relevance across scale as it must also be accessible and facilitate presence. Let’s go back to Jaya and how she describes a day: Today I woke up at 5:45 like every morning to put my eye-drops then I prayed for 25 mins and went back to sleep and woke approx.[imately] at 8:58 when my husband gets up. I was lifted from my bed to the toilet (he does it every morning), [about] 12 ft. [away] then to the bath (which is in the same room). My husband soaps me, dries my skin and dresses me. And the most difficult part about it we don’t normally get water in the shower so he has to go downstairs to full it which is 2 staircases and about 12 steps in all. After he finished bathing me he puts me in my chair which parks outside the bathroom and I wheeled myself (I have an automatic chair) to the bed-room and there he put on my body-spray, roll-on and dressed me, he also combed my hair. Jaya’s day-to-day experiences were primarily focused on micro-mobilities, with MAO moments of bathing and dressing that depended primarily on her spouse’s capabilities. She used her relative immobility to document her personal narrative, using the tools most accessible to her: time and her computer. Collins (2015, p. 35) surmises, ‘We need to engage in deliciously subversive methods of activism that take those who intentional [sic] or unintentional hold ableist views by surprise.’ Thus, I contend that Jaya’s presence participating fully in meaningful occupation represents an unapologetic interruption to the idea of ‘normalcy’. 241

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What makes NCA distinct as an empirical model is recognising that as a form of political action, it is always accessible and allows persons with disabilities to organise their own actions, making these personally relevant, promoting sustainability. Collins (2015, p. 31) revealed the key to what she considers ensuring the sustainability of activism: It is the fluid nature of crip2 communities that create a safe space for people to tell their narratives; narratives which may be difficult for the teller and the listener. This use of storytelling is an effective form of activism as it can be used to express the everyday lived experience of ableism/disablism. It is noteworthy, that each interlocutor was a member of a community. Crip community or not, it provided that safe space for sharing embodied experiences. For example, Jimmy, a ­fi fty-three-year-old chef/caterer, described with great enthusiasm the longstanding ­camaraderie established within his networks. A member of the group, ‘You for Positive Living’, they focused on ‘things that you want to do, that you never do, that you can do.’ Following the bucket list principle, they strategise about their capacities for different occupations. He argues, ‘So they does [sic] need booster and props to encourage them, and we’ll call and talk. We have a kinda network.’ It is in the process of these MAO moments, of sharing their hopes and dreams, that they themselves are transformed, unhindered by the normative gaze that may quell these imaginaries. Collins (2015, p. 32) supports this sharing of occupational desires and argues that: This subtle disruption of the norm by narratives forged in crip communities, is an effective tool for activists. Being exposed to a person’s lived experience of ableism/disablism makes it real; it creates a non-confrontation experience for the listener. NCA is neither restrictive nor following a set trajectory; instead, the strategies operate along a continuum. As Emma stated: Disabled people don’t want handouts. The Government does things without consulting the disabled community (…) Personally, I am doing other stuff. I have my blog. I am starting up a printing business where I taught myself to do graphics on my computer, do business cards, fliers and those kinds of things. I used to do things for people without charging them, but now I am turning it into a legitimate business. Emma, using both hand crutches and a wheelchair, had already begun conducting her home-based business, to supplement the meagre monthly disability grant funds. Here, she is re-creating access for herself through her home business ensuring meaningful occupation, financial accessibility and creating opportunity for social mobility. This kind of access is tangible, allowing her to work in a convenient, accessible space without additional transportation costs, while remaining outside the radar of the state. With implications for care provision for both, a child as well as ailing mother, this form of NCA is generative of the need for interdependence. NCA is not limited to the sacred walls of crip communities or to the telling of narratives either. Amy, who I introduced earlier, uses every opportunity to bring awareness to the appropriate use of person first language when addressing persons with disabilities. Similarly, for me activism lies in the pen, recognising that creating opportunities for knowledge production and dissemination are critical components of social change. As such, my and our 242

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activism places new issues on the research and public agendas, requiring that we bravely and honestly address them. I join my interlocutors, as an ally, in foregrounding the disabling effects of structural violence enabled by our colonial past, and to enrich the dearth of disability scholarship with this scholarship-activism that promotes solidarity, community and interdependence among my interlocutors.

Conclusion The everyday lives of persons with disabilities are filled with acts of NCA as MAO moments which are political, sustainable acts of resistance that exist for persons with disabilities within their capabilities. These acts simultaneously reframe the ‘being, doing and becoming’ of persons with disabilities. Contextualising Collins’s (2015) approach, the freedom to dictate personal preferences regarding how one occupies one’s time, the method and mode of participation is also an act of NCA. Disability, as a category of difference, is never produced singularly. It is a slippery notion, created in juxtaposition to one’s spatial, geopolitical, historical and socio-political environment. An intersectionality perspective is critical to understand disability in relation to other social identities, gender, ‘race’/ethnicity and class. The imperial residue that frames contemporary society results in a neoliberal propulsion to individual success, and prescribed participation in both desired and undesired occupations. By addressing the minutiae of the everyday lives of my interlocutors, I uncovered political acts of resistance that push against that ableism.

Notes 1 Pseudonyms are used for all research participants. 2 ‘Crip’ is an inclusive term used within disability activism and culture, representing all impairments and reflects a political reclaiming of the historically derogatory term ‘cripple’, as a push back against oppression (see Linton, 1998; Kafer, 2013).

References Block, P., Kasnitz, D., Nishida, A., & Pollard, N. (eds). (2016). Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability. New York: Springer. Braedley, S., & Luxton, M. (2010). Competing philosophies: neoliberalism and challenges of everyday life. In S. Braedley & M. Luxton (eds), Neoliberalism and Everyday Life (pp. 3–21). Montreal & Kingston, Canada: McGill Queen’s University Press. Braithwaite, B. (2015). Deaf perspectives on deaf education: an ethnographic study from Trinidad and Tobago. Caribbean Educational Research Journal, 18. Castrodale, M. A. (2018). Mobilizing Dis/Ability Research: A Critical Discussion of Qualitative ­Go-Along Interviews in Practice. Qualitative Inquiry 24(1), 45–55. Chouinard, V. (2014). Precarious lives in the global South: on being disabled in Guyana. Antipode 46, 340–358. Collins, K. (2015). Cripping narrative: story telling as activism. Knots: An Undergraduate Journal of Disability Studies 1, 31–37. Connell, R. (2010). Understanding neoliberalism. In S. Braedley & M. Luxton (eds), Neoliberalism and Everyday Life (pp. 22–36). Montreal & Kingston, Canada: McGill Queen’s University Press. Connell, R. (2011). Southern bodies and disability: re-thinking concepts. Third World Quarterly 32, 1369–1381. Cresswell, T., & Uteng, T. P. (2008). Gendered mobilities: towards a holistic understanding. In T. P. Uteng & T. Cresswell (eds), Gendered Mobilities (pp. 1–12). Aldershot, England: Ashgate. Cresswell, T. (2010). Towards a politics of mobility. Environment and Planning D: Society and Space 28(1), 17–31.

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Henry-Buckmire Erevelles, N., & Minear, A. (2010). Unspeakable offenses untangling race and disability in discourses of intersectionality. Journal of Literary & Cultural Disability Studies 4(2), 127–145. Fidler, G. (1983). Doing and becoming: the occupational therapy experience. In G. Kielhofner (ed), Health Through Occupation, Theory and Practice in Occupational Therapy. Philadelphia, PA: F.A. Davis Co. Ghai, A. (2001). Marginalisation and disability: experiences from the third world. In M. Priestly (ed), Disability and the Life Course: Global Perspectives (pp. 26–37). Cambridge: Cambridge University Press. Gooptar, D. C. (2017). An exploratory study: human rights, persons with disabilities and the criminal justice system in Trinidad and Tobago. Asian Journal of Latin American Studies 30(2), 51–80. Hannam, K., Sheller, M., & Urry, J. (2006). Editorial: mobilities, immobilities and moorings. ­Mobilities 1(1), 1–22. Hesse-Biber, S. N., Leavy, P., & Yaiser, M. L. (2004). Feminist approaches to research as a process: reconceptualizing epistemology, methodology and method. In S. N. Hesse-Biber & M. L. Yaiser (eds), Feminist Perspectives on Social Research (pp: 3–26). New York, NY: Oxford University Press. Huggins, J. (2003). The status of women with disabilities in Trinidad and Tobago. Women, Disability, and Identity: Part IV (Facilitating Strategies and Entitlements) (pp. 199–222). London: Sage. Jensen, A. (2011). Mobility, space and power: on the multiplicities of seeing mobility. Mobilities 6(2), 255–271. Jensen, O. B. (2010). Negotiation in motion: unpacking a geography of mobility. Space and Culture 13(4), 389–402. Kafer, A. (2013). Feminist, Queer, Cip. Bloomington, IN: Indiana University Press. Leavitt, R. L. (1992). Disability and Rehabilitation in Rural Jamaica: An Ethnographic Study. London and Toronto: Associated University Presses. Linton, S. (1998). Claiming Disability: Knowledge and Identity. New York, NY: New York University Press. Maharajh, H. D., & Konings, M. (2005). An assessment of school children with mental disabilities and their main stream integration into the education system of Trinidad and Tobago. International Journal on Disability and Human Development, 4(2), 95–102. ­ astern Melville, J. A. (2002). The impact of structural adjustment on the poor. Paper presented at the E Caribbean Central Bank Seventh Annual Development Conference. Basseterre, St. Kitts and Nevis. Caribbean Development Bank. Njelesani, J., Leckie, K., Drummond, J., & Cameron, D. (2015). Parental perceptions of barriers to physical activity in children with developmental disabilities living in Trinidad and Tobago. ­D isability and Rehabilitation 37(4), 290–295. Price, M. (2011). Mad at School: Rhetorics of Mental Disability and Academic Life. Michigan, MI: U ­ niversity of Michigan Press. Ramkissoon-Babwah, N. (2013). The role of the Caribbean entrepreneur in economic development: Strategy and process. Journal of Economics and Sustainable Development 4(11), 32–35. Ramsaran, D. (1993). Breaking the Bonds of Indentureship: Indo-Trinidadians in Business. Trinidad and Tobago: UWI, ISER. Riddell, B. (2003). The face of neo-liberalism in the third world: landscapes of coping in Trinidad and Tobago. Canadian Journal of Development Studies / Revue canadienne d’études du développement 24(4), 592–615. Stewart, T. (1994). Introduction: Caribbean entrepreneurship in historical capitalism. In S. Ryan & T. Stewart (eds), Entrepreneurship in the Caribbean (pp. 1–35). Trinidad and Tobago: UWI, ISER. Stiker, H. J. (1999). A History of Disability. Ann Arbor, MI: University of Michigan Press. Stoler, A. L. (2016). Duress: Imperial Durabilities in our Times. Durham, NC: Duke University Press. Trinidad Express. (2010). George Daniel dies at 45. Retrieved from http://www.trinidadexpress.com/ news/George_Daniel_dies_at_45-114878659.html on 15 December 2017. Wilcock, A. A. (1999). Reflections on doing, being and becoming. Australian Occupational Therapy Journal 46(1), 1–11. Wint, A. G. (2003). Competitiveness in Small Developing Economies: Insights from the Caribbean. Mona, Jamaica: University of West Indies Press.

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PART VI

Social media, support and activism

18 THE TRAGEDY OF THE HIDDEN LAMPS In search of disability rights activists from the global South in the digital era Nqobani Dube Introduction Grounded in the Habermasian view of the public sphere as an arena for rational deliberation, social media has been highlighted as a tool for expansion and deepening of liberal democracy (Couldry & Curran, 2003; Leyva, 2016; Mutsvairo, 2016). Developments in the world in general, and in Africa specifically, have witnessed a span of protest movements and other political activities, which seem to fuel their powers through the use of different social media platforms (Van De Donk et al., 2004; Howard et al, 2011; Khondker, 2011; Moussa, 2013; Bosch, 2017). Technological advancements increasingly play a critical role in helping human rights activists promote the dignity, equality and rights of people globally (Van De Donk et al., 2004). Social media is undoubtedly being deployed to foster and optimise human rights activism, but events such as the Arab Spring of 2011 indicate that its use is not always successful. Yet, social media, under the flag of new media, is clearly changing the ways in which activists communicate, collaborate and demonstrate (Couldry & Curran, 2003; Van De Donk et al. 2004; Morozov, 2009; White, 2010; Kersten, 2012; Leyva, 2016). However, the way in which social media is used differs by social groups like youth, women and persons with disabilities. Therefore, critical evaluation is needed when thinking how much of an influence on disability rights activism Twitter, Facebook, Flickr and other forms of social networking platforms have contributed in the global South, and in Southern Africa in particular. Social media has been utilised to champion disability rights issues, especially in the global South where the digital divide still exists (Fuchs & Horak, 2008), and where there is also a need to focus on disability as invisible social issue (Grech, 2012). Instead of merely celebrating the existence and vibrancy of social media driven disability rights activism in the region, this chapter explicitly examines how social media relates to discourses of disability rights issues in the global South. The danger exists, that studies of social media phenomena might only be celebrating the insignificant without dissecting social media usage for ways in which it may feed meaningfully into a process of substantial social, theoretical, legal and political engagement. This chapter thus begins by giving a little theoretical background to social

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movements based on McAdam’s et al. (1996) framework. Then the context of the developments in the disability rights movement in Southern Africa is explained. Thirdly, the chapter briefly elucidates the qualitative methods undertaken to interview thirteen disability rights activists. An analysis is given of the role of social media in powering disability rights activism in such an environment. I begin by briefly providing the background of social movements that frames this chapter.

Social movements and social media In interrogating how disability rights activists are utilising social media, McAdam et  al. (1996) offer a useful framework intended to explain social movements’ emergence, development and outcomes. McAdam et al. (1996) explain this through three interrelated factors: firstly, the political opportunities; secondly, the mobilising structures and thirdly, cultural framing processes. The first element is the political opportunity structures which refer to conditions in a society that support social movement activity and incorporate factors like the relative user-friendliness of the form of government, the steady or divided alliances among political elites, the existence of elite partnerships and the state’s ability and inclination for authoritarianism (McAdam et al., 1996). Originally coined by Eisinger (1973), the ­concept of ­political opportunity came about as a method to place social movements in the wider ­political context in which they operate. The concept of political opportunity ­ ovements come into existence not only because they are able to ­h ighlights that social m successfully mobilise resources, but because the context allows successful and sustained activism (McAdam, 1982). The second element is the mobilising structures, which are those tools that empower people to organise and take part in joint activities, including organised social bodies and the entire range of skills or devices used in the actions (McAdam et al., 1996). Social structures consist of both formal arrangements (e.g. associations or churches) and informal arrangements (e.g. circles of friends and networks of activists). ‘Tactical repertoires’, on the other hand, refer to the types of dissent and collective activity that activists know about and are ready to use (McAdam et al., 1996). In this manner, supporters will probably rally around an issue if there is a current hierarchical framework with types of protests and dissent activities they can engage in (Ratliff & Hall, 2014). Lastly, the cultural framing processes are planned efforts to design, propagate and ­challenge the language and narratives used to portray a social movement. The goal of this framing is to legitimise activists’ cases and persuade activity, utilising socially shared c­ onvictions and considerations (McAdam et al., 1996). The various terminologies and stories used to describe the protests against many multilateral institutions, such as the World Health Organisation (WHO) for example, as perpetuating a medical model of disability, exemplify a cultural framing process in disability activism. The use of various terminologies implies slightly different justifications, strategies and objectives in different social and cultural framing processes. We can see how each of these three parts of the framework are used in social media campaigns online. Yet, first I want to contextualise disability activism.

Contextualising the why of disability activism The basis for disability rights activism emanates from exclusion, which is defined as ­systematically blocking of individuals or entire communities from rights, opportunities and ­resources (Quinn & Flynn, 2012). Consequently, persons with disabilities experience 248

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multiple deprivations and unfair forms of marginalisation (Agulnik, 2002). The manifestation of exclusion is seen only if an individual is not actively engaged and participating in society (Barnes & Mercer, 2003). Room (1995) likens social exclusion not only to a lack of participation in society, but also to a lack of rights. Social exclusion can thus be inextricably associated with lives of persons with disabilities in the global South which is characterised by chronic poverty, further worsened by discrimination in all levels of the society and side-lining in policy making processes (­Ingstad & Whyte, 1995). As such, persons with disabilities are discriminated in three ways as r­ ecognised by the social model of disability: institutionally, attitudinally and environmentally (Loeb et al., 2008; Goodley et al., 2012; Mitra et al., 2013). Discrimination for persons with disabilities exists in different guises: many government bodies make no attempts to include disabled people in their work; in many countries disabled children are not required to go to school and there is no special provision for their needs if they do enrol; banks often do not accept disabled customers; employers often will not consider disabled applicants and families do not include disabled relatives in the distribution of inheritance. Often women with disabilities will experience double discrimination linked to gender and disability (Kitchin, 1998). It is this discrimination in policy and in public life that fuelled the necessity of disability activism to address inequalities and human rights abuses.

Disability activism in Southern Africa Advocating against the exclusion of persons with disabilities, the disability rights movement was also born in Southern Africa with its roots in Zimbabwe. The disability movement was started in the 1970s by a group of physically disabled people who began to organise themselves in the Jairos Jiri institution where they lived and worked. This saw Zimbabwe providing activists like Joshua Malinga who became the main link with Disabled People International (DPI) from its inception in 1981 and was later elected chairperson. The disability movement in Southern Africa was therefore strongly influenced from its inception by international disability politics. Furthermore, Malinga was also instrumental in establishing the Southern African Federation of the Disabled (SAFOD) in 1986, which is an umbrella for organisations of persons with disabilities. Other movements, like the anti-apartheid, liberation and student movements, acted as catalysts to the disability rights movement (Howell et al., 2006). The struggle for liberation in South Africa made the struggle for disability rights part of the demands to the apartheid government (Howell et al., 2006). Disability rights activists from South Africa also joined their colleagues on the international stage when the medical model of disability was rejected at a rehabilitation conference and their solidarity gave birth to DPI. DPI has continued to advocate for disability rights at an international level. As a result of transnational activism, the international community took note and 1981 was declared the United Nations (UN) International Year of Disabled Persons. Furthermore, 1983 was the b­ eginning of the UN Decade of Persons with Disabilities. Consequently, this period ­w itnessed Disabled People’s Organisations (DPOs), scholarship and activism being ­established across the world. Generally, DPOs are organisations run and managed by persons with disabilities, mandated to advocate for disability rights and economic empowerment (Coleridge, 2007). During this time, the social model became the scholarly and political orientation for the disability rights movement around the world and primarily provided the platform on which DPOs began their negotiations with various governments for a rightsbased approach on disability issues (Fleischer et al., 2012). 249

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Disability activism and institutions As the disability movement was growing from strength to strength in the 1980s, the UN and civil society organisations began working more closely on disability issues. In 1993, UN adopted the ‘Standard Rules on the Equalisation of Opportunities for Persons with Disabilities’ (WHO, 2002). Subsequently, this also led to regional decades for disability, like the Asian and Pacific Decade of Disabled Persons (1993–2003) and the African Decade of Persons with Disabilities (1999–2009). A second Asian and Pacific regional decade was also formally declared (2003–2012), and the Windhoek Declaration of Social Development, adopted by the Council of Ministers in Change and Social Development on the 31st October 2008, formally extended the work of the African Decade until 2019. As Lang (2009) notes, the mandate of the initiatives by the UN was to ensure the political profile of disability by pushing for implementation of anti-disability discrimination legislation. This set the stage for the negotiation for a treaty on disability issues. Despite the UN’s 1993 Standard Rules, they had a non-binding status, which entailed a need for a legally binding treaty on disability issues (WHO, 2002). As a result, there was an agreement among civil society organisations, influenced by the international disability movement, to push for a convention on disability rights. This led to the drafting of a legally-­ binding international treaty, whereby signatory states are publicly held to account for the promotion and enforcement of disability rights. It is important to note that the Convention on the Rights of Persons with Disabilities (CRPD) does not establish new rights for disabled people per se; but nevertheless, delineates clearly and coherently legal obligations that states have in upholding and enforcing disability rights in all aspects of life. Therefore, the CRPD codifies rights that apply to persons with disabilities in previous human rights treaties, as well as explaining new implications in greater detail (UN, 2006; Lang, 2009). The positive developments brought by the CRPD have encountered some drawbacks. Key amongst the challenges has been the difficulty amongst civil society organisations, the various governments and global society as a whole to embrace disability as a rights issue and not a charity matter (Chimedza & Peters, 1999; Barnes & Mercer, 2005; Kett et al., 2009). More so, as Lang (2009) observes, in many low income countries there is a real scarcity of reliable disability statistics. This is in violation of Article 31 of the CRPD which requires State Parties to collect statistical and other data on disability (Kett et al., 2009). As shown above, the disability movement has had its fair share of success in putting the ­d isability agenda at the centre of legislation and development in the global South (­Shakespeare, 2013). However, the literature has been silent on the newer role played by the ­Internet through its various platforms in the exchange of information, the reframing of disability issues from charity to rights issues and the coordination of efforts aimed at advocating for disability rights. I explain how I sought to understand this in the next section.

Methodology This qualitative study was conducted in Zimbabwe and South Africa, which are two ­neighbouring countries in Southern Africa. Zimbabwe and South Africa were chosen ­because of their prominence on disability rights advocacy issues in Africa (Watermeyer, 2006) and beyond (Ingstad & Whyte, 1995). In selecting participants for the study, disability rights activists, with or without disabilities, were purposively considered (Patton, 2002). A qualitative research design was adopted and the data was gathered using semi­structured interviews (Bryman, 2016). An interview guide was developed (Newton, 2010) 250

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and included topics like forms of social media that were being used and whether social media powered disability activism was yielding any results. The thirteen purposively selected participants had specialist knowledge on the subject (Cresswell & Clark, 2011) and were willing to communicate their experiences and opinions (Bernard, 2002). Seven participants were from Zimbabwe and six were from South Africa and the sample also consisted of five females and eight males. In terms of disability, three had physical disabilities, four were visually impaired, two had albinism and four were non-disabled. The participants with physical disabilities were using wheelchairs and crutches. The participants’ ages ranged from twenty to forty years, but the study specifically targeted activists who were older than twenty. ­Informed consent was given by all participants (Ritchie et al., 2013). Anonymity was assured, and in this chapter, I have given all the activists pseudonyms (Orb et al., 2001). An extensive ethical discussion about the research and its aim was held with each participant (Bryman, 2016). The researcher also clarified his role in the study for the participants (­Musante & DeWalt, 2010). The interviews were conducted in English, which was a language understood by all participants. All participants were able to read and write in different formats. The lowest education level was secondary education and the highest was university postgraduate qualification. Semi-structured interviews were deemed to be the most suitable data collection method (Newton, 2010), as this study required guided but detailed accounts of the subjective experiences of the disability rights activists in employing social media. A digital voice recorder was used to record face-to face interviews and Adobe Audition software was used to record the interviews that were conducted over Skype (Tolich & Fitzgerald, 2006). While the interviews were digitally recorded, field notes were taken during the interviews with the consent of the participants (Bryman, 2016). Each interview session lasted between forty minutes and one hour. All interviews were transcribed verbatim into English, and passages were extracted from the transcripts according to a ‘thematic analysis’ (Pope et al., 2006) in keeping with the focus on disability activism (McAdam et al., 1996). Key themes and concepts were identified and coded to provide a rich framework guided by disability and social networks theories for analysis, comparisons and presentation of the data. The next section presents findings on how social media has been employed by disability rights activists.

Findings Three key themes were identified in terms of disability activism on social media: 1) The political conditions in which activism takes place; 2) Social media as central to the work of activism and 3) Questions about if social media is working. I address each theme in turn.

Political conditions Disability rights activists revealed that the political system was not very accessible for p­ ersons with disabilities. Most participants from Zimbabwe attributed this to a poor legislative framework for disability issues, as indicated by one of them: The challenge is that in Zimbabwe the legislation on disability is still moribund as the Disabled Persons Act of 1992 has not been realigned with the new constitution and the UN convention on the rights of persons with disabilities has not been domesticated to move our laws from the medical to the human rights based approach to disability. (Tawanda) 251

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They noted that no matter how much they tried to influence change, those within the political system swept their concerns aside and left them with no other option than to campaign effectively for the disability cause. Patience states: ‘When we raise our concerns, the policy makers ignore our issues as if we do not exist.’ The inaccessibility of the political system was also largely blamed on the under-representation of persons with disabilities in the ­Zimbabwean political system. As John explained: ‘The problem is that we are seriously under-represented in all decision-making positions at all levels of our society.’ Those in South Africa also noted that despite the favourable conditions for political ­participation, only a handful of South Africans with disabilities were participating in politics. Sipho stated: ‘Our challenge is that we only see a few persons with disabilities ­ frica ­actively involved in politics of our country.’ Activists from both Zimbabwe and South A also highlighted that the inaccessibility of the political systems in the two countries still ­reflects the failure by Southern African societies to consider disability issues. For example, Sipho explained: ‘In South Africa, we have seen so often the service delivery protests by ­municipalities, which have gained more prominence above the less visible disability issues.’ While Patience noted that: ‘In Zimbabwe, disability issues have been overshadowed by other ­development concerns like HIV and AIDS and climate change.’ Social media in this regard, was shown to be failing to break the political ceiling that was keeping disability issues out of the governments’ agendas in southern Africa. Another issue that was highlighted by the activists was the polarised nature of the societies in Southern Africa on political and ethnic or tribal lines. Ndumiso explains: ‘In our country, for your issue to be heard, it would depend on who you know, what language you speak or where you come from.’ As hinted above, the other major challenge was that the ruling tribe was in control of government and if an activist was coming from another tribe, their issues were not taken into consideration. Activists from Zimbabwe hinted that they rarely get feedback from the office-holders on various issues that they would have raised. Tawanda elucidates, ‘No one usually comes back with feedback on our issues.’ This however, was different from South Africa where the activists like Helen stated: The availability of a disability focal point in government makes it easy for us to channel our issues and get feedback and the minister of social development has a Facebook group and this enables for the ministry to be responsive on such issues. The other concern was the divisions on types of impairments for persons with disabilities, which made it even more difficult to mount a strong alliance on disability issues. John comments: ‘Our other challenge is that we are divided on disability lines and there is no unity within the disability movement.’ Social media also failed to attract people from ­d ifferent groupings to build a strong network on disability issues that is able to mobilise people from all sides of the political and tribal divide to campaign for disability issues. Jennet said: ‘We seem to be communicating within ourselves and preaching to the converted in our social media campaigns.’ It was also revealed that despite the government’s capacity and propensity for repression, no disability rights activist had been silenced. The activists from Zimbabwe noted that the government had setup a ministry charged with duties for cyber-security, which made some of them self-sensor their tweets and Facebook posts so that they are not found in violation of the laws of the country. Jonathan states: ‘We are sometimes cautious when we post on social media, because we do not know who might be reading or listening to our posts.’ There 252

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was however, general agreement on the fact that disability issues were widely seen by governments in both countries as harmless and, as such, most activists were not afraid of freely speaking out on various issues affecting persons with disabilities. This made social media central to activism as illustrated next.

Social media as central to activism Social media is central to the contemporary disability rights movement, because it enables disability rights activists to participate using a widely used medium of communication by both office-holders and persons with disabilities. Saun explains: ‘We feel that social media helps us to reach out to policy makers whom we can influence for positive change.’ Social media likewise permitted the activists to choose the different causes to support without ­being coerced. Tawanda says: ‘Social media has enhanced our access to information and various initiatives that we have been able to choose whether to participate in or not.’ As indicated above, disability rights activists use social media for connecting with other groups including the mainstream media, self-advocacy organisations and interactions with the political elite and possible supporters for the campaign on disability related issues. The activists also noted that due to the low cost associated with the use of social media, they were able to connect and communicate with many people from different walks of life. For example, Jonathan commented: We have been able to easily communicate our message at little or no cost to other groups of people without disabilities through social media, thereby enhancing visibility of our issues in the community. Social media was also being used to mobilise persons with disabilities to participate in ­various activities that increase visibility of disability rights issues in the region. As a result, the ­activists noted that there were now various groups of persons with disabilities that were actively involved in championing the disability rights cause. Sipho noted: ‘Through social media we have been able to bring together like-minded people, with and without disabilities, to support the disability rights cause in the region and beyond.’ Whilst social media lowered participation costs for persons with disabilities, it was noted that the increase in their participation in various campaigns had not resulted in getting into public office; but rather into groupings of persons with disabilities: What is unfortunate is that the increase in the visibility of disability issues has not translated to the kind of results we hoped for, like seeing many people with disabilities in decision-making and public office positions. ( John) As hinted above, the activists were excited to note that they had been able to recruit many people, with and without disabilities, to support the disability rights cause. However, what was disappointing for the activists was that after recruiting people, they could not maintain their participation and they attributed this to lack of incentives for group members to continue supporting the disability rights causes. A South African activist, Thandeka, explained: The other challenge that we have observed is that after generating excitement and support on disability rights issues, we are in most cases not able to maintain the momentum 253

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as members of the network usually lose interest and some drop-out of the group or simply become passive participants. The activists highlighted that the use of social media enabled them to create collective identities. Nothando explained that: ‘Social media has helped strengthen our connections and actions on disability issues in my country.’ It was revealed that the capacity of social media to distribute content in various multi-media formats enabled the activists to share their stories in videos, pictures and text, making content even more compelling. Bongani also commented: ‘We are now able to illustrate many things relating to disability using various multi-media formats making it easy to improve understanding of disability issues by our society.’ Other activists also noted that they were employing various strategies used by other social media activists like tagging influential people and linking different social media platforms like Twitter and Facebook. However, the activists were disappointed that in spite of their deployment of various strategies, there has been no popular campaign that has taken place emanating from social media powered activism. As Patience from Zimbabwe noted: ‘No matter how much we post disability rights issues on Facebook and other platforms, the only posts that go viral are those that portray us as suffering people and objects of charity.’ This raises the question of whether social media powered disability rights activism is e­ ffective or not?

Is social media working? The activists noted that their ability to mobilise many people to support the disability cause using social media was sufficient evidence that their actions were effective. Ndumiso noted that: ‘The fact that we are able to bring people together online to discuss disability issues is a positive development, which would have not been possible without social media.’ The success also came in the form of the ability by the disability rights activists to over-ride the hegemony of mass-media that tends to down-play disability issues. One of the activists from South Africa, Sipho, noted that they had been able to catch the attention of mass-media through various activities that they did online and widely circulated newspapers had been forced to cover some of their activities. Most activists felt that social media had enabled them to make their own news as the mass-media had failed and also stubbornly refused to reframe disability issues as human rights matters. Ndumiso explains: The mass-media in its various forms has failed us as people with disabilities as it still wants to portray us as charity cases and as people that need to be treated of our disability, not as people with rights like others in the community. Whilst there is no direct evidence, the activists revealed that both the South African and the Zimbabwean governments had signed and ratified the CRPD, which is a sign that their efforts were not going unnoticed. It was further highlighted that most civil society organizations and government departments were slowly recognising the need for disability inclusion which is a cause for celebration. Kagiso explains, ‘We are also happy that government, civil society and the private sector are slowly realising the need to include us in their various programmes.’ The activists also revealed that besides social media enabling them to create a transnational disability rights movement, they were also able to store a wealth of knowledge and 254

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make informed participation much easier. Kagiso indicated that: ‘Social media has also improved information sharing on different disability rights matters and that makes informed participation for people with disabilities a reality in our community.’ Social media presence also helped in authenticating efforts by disability rights activists, who noted that they were now recognised by many around their communities as sources of correct information on disability issues. On the other hand, the activists noted that the coming in of fake news was one of the challenges that they had to continuously guard against. Helen noted: Social media has also come with other bad things that are affecting us as activists like fake news which means that we now have to commit more time in checking authenticity of the information that would be circulated. Besides fake news, the activists also noted that they had to struggle to keep disability issues visible against the information overload that threatened to stifle their voices on social media. Bongani stated: We are also forced to stay alert and to clarify on issues, as we make sure that disability issues do not disappear from the public domain, as there are many things competing for people’s attention these days. The other danger noted by the activists was that generally, disability issues were slowly being taken over by small and non-hierarchical structures, as most DPOs were failing to weather the storm, with limited donor funding and lack of support from their governments that were focussing on other issues like climate change and HIV/AIDS. Thandeka explained: ‘Our concern is that we have seen the increase in visibility of individuals and not organisations working on disability and we wonder if this will be sustainable in the long-run.’ I turn to what the following reveals about disability activism.

Discussion This study builds on McAdam’s et al. (1996) framework that explains social movements’ emergence, development and outcomes. Firstly, disability rights activists are skilled in effectively employing social media to champion disability rights issues as set out in the CRPD. However, the inaccessibility of the political system and general lack of political will were pushing disability issues to the periphery of the development agenda so the political opportunities became limited (McAdam et al., 1996). Secondly, disability rights activists had managed to recruit many other people in society and there was growing interest in the use of social media for disability rights activism but that was not always translating in terms of mobilisation of resources (McAdam et al., 1996). Thirdly, the unthreatening nature of disability issues, to the political elites, exacerbated the trivialisation of disability issues in all public policy processes and in the distribution of public goods. This was affecting the ability to ensure greater cultural framing, having a knock-on ­effect on political opportunities and mobilising resources (McAdam et al., 1996). Lastly, despite the above illustrating that we cannot speak of disability as a social movement on social media, it had reduced barriers for effective participation (like costs for mobilisation) and had made access to information on disability easier. Unfortunately, southern Africa had not witnessed an increase of public office holders with disabilities, illustrating that there was still a greater need to continue pushing for inclusion of disability issues in all areas of life in the region. 255

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Disability rights activists must develop other plans to enhance their strategies for the disability rights cause to be realised such as engaging with more diversity. The activists, as noted by Castells (1996), must also realise that they are not the only group that is benefiting from the low hanging fruits presented by social media, but they have to compete with other groups that are taking advantage of the same technological developments (Howard et  al., 2011; Moussa, 2013; Mutsvairo, 2016). The struggle for survival by DPOs due to the unfavourable economic and political conditions has seemingly given way to a rise in popularity of the young, technologically savvy and individual disability rights activists with their social media networks (Chiumbu, 2012). This confirms the views of Bimber (2001) who argues that due to such developments, there will be a shift away from formalised and hierarchical structures more generally. Furthermore, the findings of the study are also in line with the views of Cleaver (1999) who posits that platforms like social media make it easier for groups working on various issues to collaborate. This hands over greater fiduciary roles to disability rights activists to continue their work in spite of various political and socio-economic challenges posed by the conditions in southern Africa. Notwithstanding, there have been a number of limitations to the research process. The picture that has been drawn can only reflect the interpretations and understandings of the small sample of people interviewed. There are a number of disability rights activists whom I was unable to reach or consult, mainly as a result of language barriers, especially in ­Lusophone southern Africa. While these limitations need to be acknowledged, it is hoped that this chapter provides the impetus for other more in-depth and substantial investigations into the developments in social media powered disability rights activism in Africa.

Conclusion and recommendations There is no doubt that social media provides new conditions for activism, and there are many global examples in recent uprisings and large protests from both the global North and South that demonstrate this power. Nevertheless, disability rights activists in southern Africa have had limited success in deploying social media to popularise their campaigns on disability rights issues. While social media has enabled disability rights activists to ensure the: visibility of disability issues; access to information on current trends on disability issues; and mobilisation and recruitment of other willing members of the society, more can be done. What follows are possible ways to improve participation and effectiveness of social media powered disability rights activism in the global South. The recommendations below are based on the findings of the study and social media powered activism in processes of influencing change. •

•

•

•

There is a need for disability rights activists to document results, legislative success and social change and communicate them with other members of society. Results can also be used as an incentive to inspire other members of a society to take up disability concerns and also to motivate other disability rights activists. Social media allows activism to be more personal. The more personal a mode of mobilisation is, the more likely citizens are to participate. As such, social media offers disability rights activists another avenue for personalising mobilisation strategies. There is need for the provision of multi-tiered levels of participation for activists. Each activist is willing to bear different costs of participation, ranging from a simple click on social media all the way to personally organising face-to-face meetings. Disability rights activists should get citizens’ pre-commitment on disability rights activities. 256

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• •

It is also important for disability rights activists to reinforce the sense of civic duty and collectiveness around disability issues as well as to protest. Finally, disability rights activists in the global South should learn to experiment; and experiment to learn.

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19 ‘WITH THE KNIFE AND THE CHEESE IN HAND!’ A virtual ethnography of the ­cyber-activist disabled movement in Brazil and its transnational impact Marco Antonio Gavério, Anahi Guedes de Mello and Pamela Block ‘With the knife and the cheese in hand!’: an introduction This chapter examines more recent critical understandings of the use of social media to achieve political mobilisation around identity politics and resistance in the later part of the 2010s in Brazil. Two of the authors of this chapter, Anahi and Marco, are distinguished Brazilian disabled activists-academics from the field of Brazilian disability studies. They had an active role in campaign’s production as influencers.1 Anahi is a deaf woman and cochlear implant user and Marco is a man with physical disability and wheelchair user. Pamela is a United States of America (USA) disability studies scholar and activist who has been involved in Brazilian disability studies since the 1990s. At the end of November 2016, a small Brazilian group of people with disabilities spontaneously met on the social platform, Facebook, to hold discussions on possible actions for the International Day of Persons with Disabilities (IDPD), set up by the United Nations since 1992, to be celebrated annually on December third. From this initial meeting, the group ­decided to engage in collective ‘cyber-spraying’ for 3rd of December 2016, in order to ­promote and give visibility to people with disabilities in Brazil. The date is an annual moment of critical reflection on the rights of people with disabilities around the world.2 The initial posts of this ‘articulation group’ were structured around horizontal collective decision-making on what and how to engage in activism. From the discussions, it became evident that collective action was needed that aimed at a common alignment around what ‘had not been said’ or ‘still to be said’ about and by people with disabilities in Brazil. After some discussion among the members, a campaign was chosen to explain and raise awareness about the fight against ableism (Campbell, 2001; 2008) and its Brazilian meaning, through the hashtag #ÉCapacitismoQuando (#It’sAbleismWhen). Due to a set of social events that mobilised the need for collective action operating under a common political agenda, this group of disabled people relied on their existing connections on social media platforms (i.e. Facebook and Twitter) and promoted the production and dissemination of the hashtag. In a short time, the hashtag was appropriated in myriad ways 259

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by other users and users with disabilities of these networks, demonstrating how the discussion against ableism permeates the daily life of individuals with disabilities and collectively brings together diverse experiences. The choice of articulating the experienced dimension of ableism was motivated by the fact that it is a new category of discrimination in Brazil, in the sense that many of its nuances, including theoretical, are still not fully understood by the majority of the Brazilian population. The approach undertaken in this chapter is based on a virtual ethnography (Hine, 2000; 2015) of the use of the hashtag #ÉCapacitismoQuando which was created, promoted and disseminated on face 3 initially by this Brazilian movement of disabled cyber-activists. The daily connectivity with the Facebook platforms and with the simultaneous interactions that they can produce was further complimented by the amplified access to mobile and smart devices (Van Dijck, 2016). It must be said that the idea of a ‘Facebook group’ is a mechanism, functionality or application of Facebook itself. The platform provides interaction in a delimited space of its network, where a group of people can gather, comment and discuss specific topics of varied subjects. As stated above, the mobilisation with the use of hashtag #ÉCapacitismoQuando officially started on the 30th of November 2016 and it reached its peak on the 3rd December 2016 with the shaping of the Brazilian Media agenda.4 Since the mobilisation went beyond the expectations of the group and created among us also a network of common identification, Marco suggested that the ‘created event’ be transformed into a discussion group for studies and exchanges of experiences on disability, justifying that, ‘We are with the knife and cheese in hand to start a very crazy cyber movement!’. The phrase ‘with the knife and cheese in hand’ is a popular Brazilian saying that indicates the effective possibility of achieving something, or even access to certain conditions that make some movement or action favourable. In English, equivalent expressions would be: ‘have the upper hand’, ‘be in the catbird seat’ or ‘hold all the aces’. We want to focus on how the social platform worked, giving a social analysis of the transnational impact of this campaign. In this way, we engage in an analytical recovery of some interactions that have shaped and modulated the production of the hashtag and how the first and second authors unexpectedly found themselves within a collective mobilisation. This was relatively spontaneous and effective in its dissemination but only made possible within the limits of the technologies and platforms of social interaction in digital networks. We thus begin our virtual ethnography and this chapter by giving a brief overview of the emergence of ‘capacitismo’ in Brazil. Secondly, Marco and Anahi describe the socio-­ political context of the environment in which collective action took place on Facebook. They briefly describe negotiations in the Facebook group that formalised both the action strategy (a  c­ ampaign) and its operational mode (the hashtag). Pamela describes the similarities between Brazil and the USA and why regressive politics means disability activism becomes a necessity. We give an analysis of some of the statements Marco and Anahi used with the hashtag, seeking to reflect its repercussions among Brazilian users of the Facebook platform, as well as its transnational impact. We want to examine analogical versus digital activists, basing ourselves on the critique of a digital sociology that seeks to focus on the uses of media and information technologies (Miskolci, 2016a; 2016b). The idea here is to think how collective repertoires and actions have been given politically, without disregarding the current struggles for militant and identity protagonism, even after years of criticism of the ‘new social movements’ (Pait & Laet, 2015). Finally, we take the work of the Spanish artist Miriam Vega (2017) as an illustration, to argue that the disabled body does not disappear in cyberspace, but it becomes a paradoxical point of textual identity, political and material disputes in the contiguity between being on and off-line. 260

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Ableism as a political demand and analytical category in Brazil In Brazil, as an analytical category, the word ‘ableism’ was used for the first time by Anahi in a work in co-authorship with Felipe Fernandes and Miriam Grossi (Mello et al., 2013) without, however, having a more comprehensive conceptualisation. The term appeared for the first time as a political demand in an institutional document of the Brazilian Lesbian Gay Bisexual and Transsexual (LGBT) group in the Annals of the second National Conference on Public Policies and Human Rights for LGBT (II CNPLGBT), published in 2011 by the LGBT National Council, from the Secretariat of Human Rights of the Presidency of the Republic of Brazil. According to Anahi’s ethnographic report in this work, she reflects on the use of her dual academic-activist role to propose and defend in the plenary the incorporation of the word ableism in the final documents of the Third National Conference on Policies for Women (III CNPM) and the aforementioned II CNPLGBT. The introduction of the ableism category was not accepted and incorporated in III CNPM’s document; but in the LGBT conference the inclusion of the word ableism, made it in the guidelines of: (i) Confrontation Racism, Sexism and Homo/Lesbo/Transphobia; (ii) Health; (iii) Budget and (iv) Sport. Ableism is again the subject of reflection in a paper titled ‘For a genealogy of ableism: from state eugenics to social ableist narrative’5, by Adriana Dias (2013) and published in the annals of the II International Symposium of Disability Studies. Drawing on Campbell’s argument (2001, 2008), the author defines ableism as, ‘a neologism that suggests a shift away from capacity, aptitude, and disability’ (Dias 2013: 5). In his Master’s dissertation, Régis (2013) refashions the work of Ana Maria Pereira (2008) and Gregor Wolbring (2008), to suggest the Portuguese term ‘capacitismo’ as a translation coming from ‘ableism’. However, ableism is briefly defined in a footnote, when the author refers to the term as; ‘­Discrimination based on disability, stemming from the belief that people with disabilities are inferior’ (Régis, 2013, p. 120). Ávila (2014), without defining it, discusses ‘ableism as queerphobia’ to suggest that the queer project is queerphobic with disability because, ‘Disability is far from being recognized as any position that is not abject, since the experience of disability is fused and confused with its ableist definition’ (Ávila, 2014, p. 134). Ávila (2014) argues for the urgency of including ableism as part of the matrix of intersectional discrimination in feminist, decolonial, and queer theories. In the interdependence between the ableism and the other systems of oppression, it is ­perceived as crucial to insert disability in the role of ‘social markers of difference’. ­However, it should be noted that for a long time there has not been an analytical ­category in ­Portuguese that expresses ‘discrimination on grounds of disability’, in the same way that racism has ­replaced the old expression ‘discrimination based on skin colour’ (Diniz & Santos, 2010). ­A fter her work in LGBTQ and women’s issues, Anahi published an a­ rticle: ‘Disability, ­inability and vulnerability: on ableism or the pre-eminence of ableist and b­ iomedical ­approaches of the Human Subjects Ethics Committee of UFSC’ in 2016 in the journal Ciência e Saúde Coletiva. Based on the works of Fiona Campbell (2001; 2008) and Martha Nussbaum (2007), ableism is defined as follows: […] it alludes to a prejudiced stance that hierarchises people according to the adequacy of their bodies to the able-bodiedness. It is a category that defines how people with ­d isabilities are treated in a generalised way as unable (unable to produce, to work, to learn, to love, to care, to feel desire and to be desired, to have sex etc.), by approximating the demands of the movements of persons with disabilities to other social 261

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discriminations, such as sexism, racism and homophobia. This posture comes from a moral judgment that associates ability only with the functionality of bodily structures and mobilises to assess what people with disabilities are capable of being and doing to be considered fully human. (Mello, 2016, p. 3272) The term ‘capacitismo’ is a Portuguese translation from the English ‘ableism’ and not from ‘disablism’, as initially proposed by Pereira (2008). There are some interpretations, contradictions and theoretical-political disputes around what is configured as ableism.6 We are more attentive to the considerations made by Campbell (2009), who proposes, using the already intersected theories between queer and crip7, that ableism is a matrix of corporeal and behavioural intelligibility. According to Campbell (2009), this matrix draws its own limits between nature and culture by defining as a ‘natural order of things’ a fully functional and capable corporeality, that is, a body without disabilities and diseases. In this sense, the notion of disability is configured, materialised and fed through social practices and discourses that place it as the opposite, natural or created, of ability, that is, an organism without problems in its physiological, neurological or sociological functionality (Campbell, 2009). In the next section, we present our reflections on our own political participation and use of Facebook. We describe the socio-political context of the environment and the moment in which this collective action took place against the background of our diverse experiences in the fields of disability studies in Brazil and USA since the 1980s. We describe each of our experiences in turn.

‘The crip power’ of Facebook: Marco’s account I have participated in the ‘collective action’ since its inception, at the invitation of Mila, who was one of the disabled people who started this movement. She contacted me a few days ­before the group formed on Facebook, proposing that we think of something we could create in terms of political mobilisation. I soon began interacting and commenting on posts and ideas with other previously unknown people in a group of the ‘face’ created by Mila. Mila and I have had a virtual friendship for many years, having first met in 2005 in a community which discussed disability issues on the now extinct ‘Orkut’ social platform. We had common interests, above all, how to explore more critically the issues of identity and biopolitics (Foucault, 1998) that surrounded us: people with disabilities diagnosed with a ‘defective’ and degenerative genetic condition. We have been friends ever since and our relationship sustained because we wished to keep in touch. The possibility of maintaining this connection was facilitated by access to social media and interactive platforms in digital information networks. Mila and I have never met in person and always play with the fact that our interactions always take place through the ‘dark mirrors’ of our computers and cell phones. Yet, we do not feel as if we needed offline contact in order for our friendship to strengthen and sustain itself. I see the relationship with Mila as a way of illustrating how the internet and the ways of staying ‘perpetually connected’ in the network have enabled forms of association, connection, interaction and agency between people without physically facilitated access to public and collective spaces. Through access to broadband internet, mobile computers and smart phones, I was able not only to meet people representing ‘crip power’8 from other parts of Brazil and the world, but also to recognise my political identity as a person with disabilities in interactions with other people who also viewed each other in the same way. To put it another way, the expansion of internet access and information technologies mediated 262

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in the last twenty years in Brazil made it possible for people with disabilities to envisage ways of interacting and participating in public and collective life from disparate physical localities.9 In this sense, the digital connectivity characteristic of Facebook (Van Dijck, 2016) a­ llowed me to interact with other people with disabilities in a way that being offline only, maybe I would not be able to. At the same time, I argue, the on and offline worlds are contiguous and mutually influential. In the case of our political mobilisation it was entirely mediated by social media technologies and digital platforms, but it did not fail to produce realities in off-line spaces. The more we produced individually in social network posts accompanied by the hashtag #ÉCapacitismoQuando, the more I perceived my own daily life in the experiences described by countless other people with disabilities. Perhaps this collective perception of the pervasiveness of ableism helped us to produce a certain notion of ‘crip collectivity’ that was mobilised through hashtags. In this way, digital platforms such as Twitter and Facebook help to disseminate, even partially and momentarily, parameters of creative production of affective recognitions and identity belongings. Connecting myself to this series of disabled experiences outside of my own has made me realise that one of the effective powers of digital networks is their constant potential to produce realities from previously connected forms.

‘Facebook Activism’ without communication barriers: Anahi’s account Like Marco, I got involved from the outset in the Brazilian collective campaign against ableism, at the invitation of Isadora, a black and bisexual woman with a disability (low vision), who I met during an introductory course on disability studies and crip theory who I taught at the Faculty of Law of the University of Brasilia (UnB) in May 2016. The course was promoted by the UnB’s Academic Law Centre and was open to the public, with Isadora being one of the participants. From there, we also became ‘face’ friends and when invited to join a group by her, I resisted, both because of my time being taken, at that moment, for other academic and personal demands as well as considering that it would be just another ineffective or passive Facebook group – all talk, no action. However, after Isadora explained that it was a small group of disabled people proposing some form of mobilisation that would be of short duration, to celebrate the 3rd of December, I decided to accept. It is also necessary to point out that I was disenchanted with the Brazilian disability social movement as a whole, and particularly with the Brazilian Independent Living Movement. This had been my activist base since 2003, but I broke away and definitively left in 2016 due to the passive stance of most of its members in the face of the coup d’état that deposed the democratically elected Brazilian president Dilma Rousseff (Gentili, 2016; Geraldes et al., 2016) on the 31st of August 2016. It has become untenable for me to remain in any disability activist space, knowing that a number of persons with disabilities and allies, whether for supporting the coup or for being exempt from it, have not considered or cared little for the worst: the arrival of a new period of austerity for people with disabilities, especially those of the poorest strata. The dismantling of social policies of disability by Michel Temer’s illegitimate government has reached strategic areas such as education and social assistance, respectively. They have emphasised investments in ‘special education’ to the detriment of ‘inclusive education’ and promoted, under the guise of combating fraud, and based on an exclusive or mostly medical evaluation of disability, the largest ever cuts since the re-democratisation of social benefits related to ‘sickness aid’ and ‘disability pensions’, benefits guaranteed to people ‘unfit for work’ since the Brazilian Federal Constitution of 1988 was ratified. 263

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Despite my scepticism about the disability social movement, I realised that being a disabled academic woman in the field of disability studies implies consideration of my own activist engagement as a form of reciprocity in relation to a social group that I am also a part of, regardless of its members and whether or not they are my direct political allies. ­However, activism needs to be compatible with the ethical premises of disability justice (Mingus, 2010; Ben-Moshe et al., 2014; Pollard & Block, 2017) so that support for struggles for a better ­society for people with disabilities makes sense. This cannot be done in a context of disability networks, collectives or social movements whose ‘right-wing ideology’ is implicitly indifferent to the political, economic and social consequences of the democratic rupture provoked by a coup d’état. When added to the mobilisation group, I noticed that I did not know most people with ­d isabilities, except for the few exceptions like Marco and Isadora. As I was interacting, I  ­realised that it was a young group with a balanced number of women and men with ­d isabilities, most of them with some type of physical disability, followed by visual disability (I was the only deaf person in the group), with more ‘leftist’ or progressive leanings in incipient discussions on disability and ableism. That is, I found myself faced with, ‘an outraged, well-informed and powerful grassroots movement’ (Sheldon, 2016, p. 73), which renewed my feelings as well as political and analytical perspectives on the strategies of emancipatory struggles in the field of disability. What’s more, if for many people without disabilities, Facebook made things easier, for people with disabilities like me, Facebook made things possible.10 That is, in my case, since Portuguese is my first language and communication on Facebook is practically text based, my deafness did not affect my ability to use it.11 In this way, Facebook does not represent barriers in communication for me, except in situations where videos without subtitles are posted. As a deaf person, ‘two hands and two eyes’ sufficed to make my ‘Facebook activism’ prove to be a potent social tool to promote my anti-ableist struggles, while at the same time expanding my relationships and channels of communication with others with disability as critical as me of the various facets of ableism, strengthening disability among us as a ‘collective identity’ (Ellison et al., 2007; Shpigelman & Gill, 2014).

Intergenerational disability rights dialogue: Brazilian and American contexts Reading Anahi’s section lifted me right out of my chair. It woke me up and gave me ­d irection to write this section. I did not participate in #ÉCapacitismoQuando, though I have ­participated in similar actions based out of the USA on Twitter (such as #autisticwhileblack). #ÉCapacitismoQuando is a beautiful creative action of a new generation of disability ­scholars whose critiques also take in the regressive politics of this period. Regressive p­ olitics ­overtook Brazil years before Trump was elected in the USA when progressive president Dilma R ­ ousseff was impeached. My discussion is about the realities of precarity, fear, v­ iolence, death and the struggles that are necessary but also the affordances we should make for each other to survive these times (Erevelles & Minear, 2010; Mingus, 2010; Erevelles, 2011; Ben-Moshe et al., 2014; Block & Friedner, 2017; Dokumaci, 2017; Pollard & Block, 2017). So, what I want to add to this narrative is the realities of trauma and fear as disabling, and I want to think about perhaps how we can be gentle with each other across the generational divide.12 How can this new exciting generation of cyber protests also value and respect the contributions of the elders, labelled ‘the dinosaurs’, providing affordances, respecting the reality of the fears and traumas of people who lived through the first dictatorship? So let us think about a way forward through a history of dictatorship, through coup d’état, through fascism or proto fascism. Let us talk about the realities of violence experienced and violence implied. 264

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In the USA, young disabled ADAPT13 activists are putting their bodies on the streets, in the prisons, in the offices of the law-makers, being dragged away by police in order to highlight how cuts to health care and social support infrastructure are a matter of life or death struggle for disabled people (ADAPT, 2017; Angelucci et al., 2017; Block & Friedner, 2017). Let us talk about the realities of life and death when disability government policies and funding are cut to the bone. Let us talk about the realities of fear; let us talk about a disabled woman who died in Brazil because the simple plastic part that she needed for her medical device had to be ordered from out of the country and did not arrive in time. Let us talk about my friend Nick in New York City whose descent into death also followed this trajectory when a little plastic part also failed to arrive for him. Let us talk about how fragile these infrastructures for disability support and disability rights movements are. So, is it passivity and is it complicity or is it something more complex – something to do with the realities of trauma and fear based on life experience?

What ableisms? This chapter does not allow us to engage in an extensive mapping of hashtags nor to map their main disseminators. However, we want to point out that the hashtag joined the ‘trending topics’ of the social networks that hosted it and gained prominence on social media and Brazilian news sites.14 In fact the hashtag, #ÉcapacitismoQuando, circulated a lot in the period from the 29th of November to the 5th of December 2016, bringing some modest visibility to the subject and the people who most actively produced its content. Perhaps most interesting was the appropriation of the hashtag beyond the disability international day, or the week in which it occurred. This surpassed our aims. When we discussed the use of the hashtag, we had topics around which we structured discussions and linked actions. The hashtag #ÉCapacitismoQuando was chosen by the group as a way to give visibility to a daily experience of disability from what disabled people themselves viewed as the ableist relations of a society. For us, the term ableism refers to the ­naturalisation and hierarchy of human bodily capacities. Listening, seeing, speaking, ­thinking and walking, for example, are considered natural things that do not require a lot of individual learning and social conditions throughout life. In this way, when a person does not see with his eyes, he is considered to be biologically different and becomes culturally perceived as ‘disabled’. Ableism is a hierarchical and naturalised way of conceiving the human body as something that should work and act within very well-defined biological rules. Ableism prevents the consideration that it is possible to walk without having legs, to listen with the eyes, to see with the ears and to think with every inch of skin that we possess. We illustrate three examples of this type of narrative: #It’sAbleismWhen you call a person with disability ‘special’, denying her the right to an ordinary life. People with disabilities are not ‘special’ nor do they have ‘special needs’ just because they have a disability. Disability is an attribute (quality) that constitutes the human condition, not a problem (deficit). It is not necessary to ‘hide’ the disability, calling us ‘special’. I openly assume my disability (deafness), just as I openly assume my sexuality (lesbianity). (Anahi) #It’sAbleismWhen it is believed that disabled bodies are naturally more dependent than ‘normal’ bodies. One of the main human conditions is interdependence. (Marco) 265

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#It’sAbleismWhen you treat a woman as less capable than man; a black person less ­capable than white person; a homosexual person as less capable than a heterosexual person; a fat person as less able than a lean person; a disabled person less able than a non-disabled person. Ableism is the tyranny of the abled, skilful and perfect bodies to the detriment of the disabled, crippled, deformed, deviant bodies, in short, of all bodies considered abject within compulsory able-bodiedness. In a compulsory able-bodied world one perceives the existence of a hierarchy of bodies and when one body is considered superior to another, one is practicing ableism. (Anahi) The above statements contest the hegemonic cultural productions of ‘abilities’ marked by the form and functioning of bodies that in turn mobilise and injure our sensitivity to what is ‘normal’, ‘beautiful’, ‘healthy’ and ‘independent’, because the charismatic fantasy of ­solidarity sees disabled people as ‘special’ passive subjects. The person with a disability is the typical ‘example of overcoming’: only because he has a disability and, despite his disability, ‘if ’ he or she can do or ‘get over’ doing things that ‘ordinary people’ do, he or she is seen as an extraordinary subject. Marco makes this challenge and is also in dialogue with a feminist theory of care through the principle of interdependence (Kittay, 1999), while Anahi shows that ‘abilities’ can reach other dimensions of identity. Thus, Campbell’s (2009) perspective on ableism reflects that it is not enough to only view oppression, violence and its relations to people with disabilities, it is necessary to go beyond showing how disability is a stigmatised social construction or one of the plural ­possibilities of body conformity and human variability. Campbell (2001; 2009) argues it is also essential to show how the idea of ‘ability’ modulates itself as natural, normal and healthy and is fed by knowledge that produces naturalised understandings of what are or are not ­deficiencies, ­d ysfunctions and bodily disabilities. From a disabled perspective on ableism it is worth ­d iscussing and critically producing alternative ways of circumscribing the h ­ eterogeneous identity dimensions of gender, ‘race’/ethnicity, sexuality, class and disability that can cross the lives of all people, as shown in Marco’s hashtag: ‘#It’sAbleismWhen the masculine representations of disability are manly strong wheelchair users’. Similarly, we emphasise that the message can and must be multi-dimensional, when we affirm that it is no use for the disabled social movement to show itself engaged with the anti-ableist struggles if it does not also ­commit itself to the feminist, anti-racist and anti-LGBT struggles. For example: #It’sAbleismWhen you, a disabled person, advocate an anti-ableist society for people with disabilities, but reproduce their sexism against women, their racism against black people and their gay/lesbian/bi/transphobia against LGBT people. Because the tyranny of ability is not exclusive to people with disabilities if you treat women as less capable than men, blacks as less capable than whites and LGBTs less capable than heterosexuals. (Anahi) Clarifying the relation of interdependence between ability and other systems of oppression, is perceived as strategic to insert disability as ‘social marker of difference’. For example, the criticism of the notion of ‘full physical ability’ from crip theory (McRuer, 2006) seems to entail a concept of normalisation that is apparently more difficult to understand than the queer analysis of the relationship between homophobia and compulsory heterosexuality. We illustrate this below. 266

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#It’sAbleismWhen when you exclude the disability from intersectional gender and ‘race’, gender and sexuality debates. The crip theory deals precisely with this: it questions the exclusion of ableism as the matrix of intersectional discrimination in feminist and queer theories. Including it as an analytical and intersectional category is the obligation of everyone in the field of gender studies and sexualities, for one simple reason: disability, if it is not part of your life at the moment, will inevitably become so. Why? Because everyone gets older, and will age. Situations of disability will be part of the life cycle of each and every one of us. (Anahi) #It’sAbleismWhen people with disabilities are accustomed to being overlooked in affective and erotic relationships. It’s not just a matter of ‘beauty’. The way bodies can or cannot travel across the world defines with whom and how we build interactions. And how do we make relationships in a world that always demands the ‘normality’ of the other? (Marco) Like illness or death, disability is also a singular and elemental form of event that appears in the lives of all of us (Gardou, 2006). Being part of the life cycle, disability is confused with the aging of all humans and non-humans. From a crip perspective, it can be said that not only are people with disabilities not immune to ableism, like all other binary categories of human beings considered ‘less capable’: women compared to men; people of one skin colour to another; the homosexual as opposed to the heterosexual and so on. Placing disability at the intersection of these other categories is not only necessary and urgent, in order to show that disability is not ‘only’ one category ‘of the other’ but that it has to do with all of us. Disability is a solitary existence but it needs to shift from individual experience to collective experience so that feminist, classist, anti-racist and anti-ableist struggles intertwine.

Considerations Since the end of 2015, many intellectuals and left-wing activists of Brazilian politics have come to accuse the coup plotters of deploying the oppressive structures that were mobilised at the end of the 2014 elections, using the deposition of the then-elected president Dilma Rousseff as a vehicle and excuse. In our reading, the rupture with the democratic order in force since 1988 began officially with the departure of the Brazilian Democratic Movement Party (PMDB)15 from the allied base of the Workers’ Party (PT) government, epitomised in the letter from vice-president Michel Temer to Rousseff and the launch in November 2015 of the government project ‘The Bridge to the Future’. The political movements that claimed disability (Linton, 1998) as a strategic term of ­c ultural and social identification emerged in the USA and UK during the twentieth ­century (Diniz, 2007; Mello & Nuernberg, 2012; Gavério, 2017). In these countries, throughout the 1970s and 1980s, and not without conflict, these movements became allied around the ­collective search for an ‘independent’ and ‘autonomous’ life. Through the ­international motto, ‘Nothing about us, without us’, the Disability Rights Movement produced its p­ olitical visibility based on the notion of accessibility in public spaces and in those institutions where the lives of disabled people were ‘managed’. Participation of disabled people in daily life and inclusion of their labour (Abberley, 1987) was demanded, and it was ­denounced that institutions designed to care for disabled people were also the major producers of ‘­exclusion’ and violence suffered by them. Thus, from the 1970s onwards, identity politics movements c­ ircumscribed the idea of disabled or persons with disabilities 267

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and have largely influenced and demanded legislative responses, deinstitutionalised spaces and decision-making for rights. The 1980s and 1990s heralded the promotion of various international actions, guidelines, legislation and policies that would later be adopted in countries at international, national and regional levels. In this sense, while the effects of the neoliberal austerity policies of the 1980s and 1990s emerged in Europe and the USA, in Brazil between 2002 and 2015 we had the e­ xpansion of public services and structures from a notion of ‘State Provider’, carried out by the governments of Luiz Inácio Lula da Silva (2002 to 2010) and Dilma Rousseff (2011 to 2016). Yet, in Brazil, since May 2016, there has been an emergence of austerity, a revival of conservative politics regressive for persons with disabilities, and watered-down disability politics. While finishing revisions on this text, on the last Sunday of October, 2018, the ­u ltra-rightist candidate and reserve captain of the Brazilian Army, Jair Messias Bolsonaro, was elected with 55% of the valid vote. Bolsonaro emerged strongly as a ‘popular figure’ after the political destabilisation generated by the coup d’état in 2016. He is known as a staunch defender of the military dictatorship in Brazil (1964 to 1985) and the practice of torture against political opponents of the Brazilian military regime. The candidate embarked on a massive campaign through the internet in the last two months prior to the elections, especially through the orchestrated use of ‘fake news’ in the WhatsApp16 application against Fernando Haddad, his main opponent and member of the same party as Lula and Dilma. Despite of the abundant evidence that the WhatsApp campaign violated Brazilian electoral law, Bolsonaro was able to capitalise on a certain right-wing populism using speeches such as ‘the fight against corruption’, ‘the possession of arms by the common citizens’, and ‘the elimination of minority activisms’. In his rhetoric, he promised more health, education and public security, while at the same time sought to nurture support of a policy of deepening fiscal austerity produced by the Michel Temer government. Bolsonaro also called for ‘Christian’ values, such as the defence of the Christian f­ amily and abortion prohibition. Thereby, Bolsonaro gained support from strategic portions of the Brazilian population, including people with disabilities. It’s particularly noteworthy the widespread adherence and voting of Deaf people for Jair Bolsonaro, is partly due to the fact that his wife, Michelle Bolsonaro, is evangelical and acts as an interpreter of Brazilian Sign Language (Libras) at Batista Attitude Church, a Pentecostal church, translating the preachings into Libras. This data is indicative of the dominating role that Brazilian evangelical Protestant churches had and have in the history of the Brazilian Sign Language, through their religious agents acting as interpreters of Libras. According to Silva (2012), the activities of these religious agents extrapolated the limits of action of Brazilian evangelical churches, with their participation in the emergence of a ‘Brazilian Deaf movement’, as well as from the formation of Deaf Culture and Deaf Studies as an academic field of study in Brazil, and the constitution of a business linked to Libras, acting mainly as interpreters of Libras. In fact, a large part of the Brazilian academic production about deafness was produced by agents with a Protestant religious trajectory as well public and institutional positions related to deafness are in many cases also occupied by these agents, who may or may not use explicit religious insignia. By focusing on the activists and intellectuals who relate to and commit themselves to the sociological and cultural interpretation of disability, we realise that one of the main concerns was with the political actions and speeches that called for the ‘reduction’ of the Brazilian state. Thus, since the end of 2016, we have noticed the apparent a­ pathy (­passivity or fearful silence) of some of the great historical disability activist leaders in relation 268

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to the ideological and material effects of the state deregulating or privatising ­labour, health and social security institutions. This is accompanied by a return of biomedical-­ rehabilitative-charitable discourses on policies for people with ­d isabilities. It was in this political climate that this hashtag mobilisation took place. Even though the implicit realities of structural violence were not as explicit as Brazilians have ­experienced in the past, disabled people in this group felt the need to produce something collectively in the face of a politically troubled moment in our history. Even if the political dimension of being opposed to the coup d’état was not centrally manifest in our collective discussions, we believed that in times of institutional crisis, people with disabilities needed to demarcate their positions. It was in this context that the virtual action discussed in this piece occurred. Currently, it has been quite common in Brazil for people with disabilities in social networks to use #ÉCapacitismoQuando to denounce or discuss questions that relate to disability experiences and the current political, cultural and social tensions which only seem to be increasing. In this sense, the campaign against ableism developed in unexpected directions and also reveals a sociological understanding of what has been understood by this term in Brazil. In our anachronistic reading of events, one of them was the possibility of accessing our own subjectivities to ‘textualize’ ourselves (Illouz, 2007) as a diffuse collective of ‘people with disabilities against ableism’. The format in which the action developed centred on the idea of diffusing a collective concept (ableism). Defining and harvesting it from innumerable and individual experiences, allowed us to access and share our own capacitive experiments and those of other people. Thus, the campaign not only brought the word capacitismo to the surface, but also created an environment in which it can even be ‘created’, that is, produced discursively from what was written collectively in the hashtags.17 At this point ways of accessing social networks through digital media, provides a way to dissipate the individualisation and fragmentation and allows us to recognise intimate bodily experiences in textualising the bodies and experiences of other people – thus individual ­experience become collectivised. Van Dijck’s (2016: 34) idea that platforms such as Facebook are, ‘Political spaces and performative infrastructures [where things happen]’ is instructive. Things are happening, including things related to the corporeality that is required of us to think of things that we can define as ableism. Lupton (2017) ends up using a ‘crip vocabulary’ in using the term ‘prosthesis’ to i­ndicate the mutually constitutive interactions of bodies and current technologies. In this sense, prostheses would no longer be devices, limbs or artificial body parts aimed at the re-­ adaptation of disabled bodies in the world, but also our cell phones and notebooks. Thus, it is possible to think that people with disabilities, when mobilising around the hashtag #ÉCapacitismoQuando, used it as a kind of textual-digital prosthesis. The ‘textualization of subjectivity’ (Illouz, 2007), to some extent contained in this hashtag as a ‘cybernetic’ textual prosthesis, can also be found in the artistic and ­political work of Spanish artist Miriam Vega.18 The artist, who calls herself an ‘illegal ­d isabled ­person’, has shown us her artistic interventions such as the El Cuerpo Exposto (The Body Exposed) project or her most recent proposal #Incómodasíntesisdeunapostura (#UncomfortableSynthesisofaPosture). For instance, in one of her projects, the artist used a camera to do a daily record of her body while documenting the evolution of her disability and her search for a diagnosis. In another project, Vega proposed hashtags so that people who were interested in discussing certain themes could do so collectively. These themes included: ‘individuality’, ‘programmed obsolescence’, ‘precarious work/precariousness’, 269

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‘leonese culture’, ‘silence necessary after opening’, ‘time as an ambiguous measure’ and ‘fictions and realities of the body’. Vega argues in an interview (Otero, 2016) that she is interested in: The use of posts and the hashtag as a leaking and expansion of knowledge, as a grouping of data, as a way to promote learning from our self-taught possibilities. Posthuman and digital have challenged the body. The text is found before the body itself. Marco and Anahi met Miriam on Facebook because of the scope the hashtag campaign provided nationally and internationally to the authors. Somehow, the hashtag has circulated in many countries in Latin America, such as Argentina and Mexico, in addition to reaching the USA and Europe, especially Spain. One possible speculation is that both Marco and Anahi had been strengthening ties with many academics from these regions, shortly before engaging in the campaign. As they used their own networks to convey their ideas, many academics and activists from around the world felt comfortable to join the protest, creating their equivalent hashtags, such as in Spanish: #EsCapacitismoCuando. A few months before the campaign, the authors talked with Vega about political issues regarding the experience of disability and how one can think of other forms of collective communication in order to produce other less normative matrixes of understanding about bodies and their disabilities. It is precisely this use of digital media by the artist, such as the images of her body and the hashtags with diverse themes that instigated us to think, in analogy with the hashtag action #ÉCapacitismoQuando, about what Vega calls ‘prosthetic texts’. In this sense, both the use of photographs, which primarily captured disability prior to any diagnosis (Vega, 2017), and the hashtag in question proved to be a point of fusion and diffusion of collective, carnal, and digital body constructs. In that sense, we end up complementing Vega, asserting that not only can text come before the body, but the body itself can become a new and imperfect text to be collectively written.

Acknowledgments The success of the hashtag campaign #ÉCapacitismoQuando was only possible due to the partnership of our Brazilian colleagues from the ‘International Action of the Person with Disabilities’ group on Facebook. We thank everyone for their rich exchanges and conversations, especially Fatine Oliveira, Isadora Dias and Mila Oliveira.

Notes 1 According to Renata Baboni (2016, p. 15), hashtag influencers are ‘Participants who have a high potential for influence over others because of their prestigious social position in digital media.’ In our case, there is also the academic prestige that we enjoy in the field of disability studies. This position eventually encouraged many ‘face friends’ of our profile, most of whom are disabled or existentially involved with the disability universe, to join the campaign by creating their own hashtag phrases. 2 Despite the often paternalistic discourse on what constitute ‘human rights guarantees’ from transnational organisations such as the United Nations, the World Health Organisation (WHO) or even the World Bank, historically ‘identity politics’ movements have influenced official sociopolitical conceptions and understandings of those institutions, for example, in terms of persons with disabilities (McRuer, 2006; 2018). 3 According to Van Dijck (2016), ‘face’ is the most common and everyday way of referring to the connective platform of social network called Facebook.

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‘With the knife and the cheese in hand!’ 4 For example, see repercussion in the Brazilian Veja Magazine, who reported the hashtag’s g­ oing ­v iral: https://veja.abril.com.br/blog/virou-viral/por-tras-da-ecapacitismoquando/, retrieved on 30 November 2018; and in Fórum Magazine: https://www.revistaforum.com.br/ecapacitismoquandohashtag-amplia-debate-nas-redes-sociais, retrieved on 30 October 2018. 5 All translations from Portuguese language to English language are free. 6 In Brazil, the term has been theoretically interpreted ambivalently, sometimes as a form of social oppression and violence aimed at people with disabilities, or a bodily and behavioural normativity based on an ideal of total functionality of the individual. 7 Originally the term ‘queer’ had a pejorative connotation to refer to all LGBTI people (Lesbian, Gay, Bisexual, Transgender, and Intersex people) who broke the norms of gender and sexuality. In analogy to queer, ‘crip’ is an abbreviation of cripple, a term that served to deny in a negative way those that transgressed corporal standards. While the main axiom of queer theory postulates the fact that many contemporary societies are governed by the presuppositions of hetero-cis-­ normativity and compulsory heterosexuality, crip theory focuses on the postulate of compulsory able-bodiedness and the body normativity of our social structure with little acceptance to body diversity (see McRuer, 2006). 8 Crip Power invokes the same ideas of the Black Power movement concerning anti-racist and anti-­ ableist struggles. In the context exposed here, Crip Power also tries to blur the dimensions of what is ‘authentically disabled’. In other words, the term crip seeks to blur among other things the ontologies of disability and disease, amplifying the possibilities of ‘unlikely alliances’ (McRuer, 2006, p. 40) that pierce certain identity bubbles. 9 For a discussion of the interaction between public and private localities from the on-off contiguity provided by digital media see McQuire (2008; 2015). On the expansive use and thinking of digital technologies in Brazil see Facioli and Miskolci (2015) and Miskolci and Balieiro (2018). 10 This phrase refers to the famous placement of Mary Pat Radabaugh, widely used in the field of assistive technology: ‘For people without disabilities, technology makes things easier. For people with disabilities, technology makes things possible’ (Radabaugh, 1988, cited in Oberle et al., 1993). 11 Although Facebook represents an important tool for use by people with disabilities, it does not provide full access to all people with disabilities. It is not accessible to visually impaired people, people with cognitive disabilities or people who have difficulties reading and understanding text (see Shpigelman & Gill, 2014). 12 Personal conversation with Petra Kuppers on 19 April 2018. 13 ADAPT is an American activist group which is in favour of accessible transportation and against institutionalisation and cuts to health care that threaten disabled people. 14 Retrieved from http://www.inclusive.org.br/arquivos/29958 on 30 October 2018. 15 Michel Temer belongs by party affiliation to the PMDB, while Dilma Rousseff is from PT. 16 WhatsApp is a free instant messenger application for smartphones. WhatsApp uses the Internet to send messages, images, audio or video. 17 A terminological scrutiny comparing contemporary theory on ableism and the ‘militant’ productions of the question can and should be done in order to map the frictions between these classificatory instances. 18 The entire production of this crip (‘tullida’) artist, as Vega terms herself innumerable times, can be found on her personal website: http://www.miriamvega.es/. We thank the artist very much for all the conversations.

References Abberley, P. (1987). The concept of oppression and the development of a social theory of disability. Disability, Handicap & Society 2(1), 5–19. ADAPT. (2017). Vox – ‘No cuts to Medicaid!’: protesters in wheelchairs arrested after release of health care bill. Retrieved from www.adapt.org on 30 October 2018. Angelucci, B., Costa, L., & Block, P. (2017). People with disabilities: fighting for their rights in the USA and Brazil. Revista de Educação PUC-Campinas 22(3), 339–355. Ávila, E. S. (2014). Capacitismo como queerfobia. In S. B. Funck, L. S. Minella, & G. O. Assis (eds). Linguagens e Narrativas: Desafios Feministas, v.1. Tubarão: ed. Copiart. Baboni, R. (2016). Entre experiências e diferenças nas mídias digitais: modos de uso e desejos-hashtag na #SeráQueÉRacismo. Master thesis in Sociology. Federal University of São Carlos, São Carlos, Brazil.

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Gavério, Guedes de Mello & Block Ben-Moshe, L., Chapman, C., & Carey, A. C. (2014). Disability Incarcerated. New York: Palgrave MacMillan. Block, P., & Friedner M. (2017). Teaching disability studies in the era of Trump. Somatosphere. ­Retrieved from http://somatosphere.net/2017/08/teaching-disability-studies-in-the-era-oftrump.html on 30 October 2018. Campbell, F. K. (2001). Inciting legal fictions: ‘disability’s date with ontology and the ableist body of the law’. Griffith Law Review 10, 42–62. Campbell, F. K. (2008). Exploring internalized ableism using critical race theory. Disability & Society 23(2), 151–162. Campbell, F. K. (2009). Contours of Ableism: The Production of Disability and Abledness. New York: ­Palgrave Mcmillan. Dias, A. (2013). Por uma genealogia do capacitismo: da eugenia estatal à narrativa capacitista social. In: Anais II Simpósio Internacional de Estudos sobre Deficiência (pp. 1–14). São Paulo: Companhia das Letras. Diniz, D. (2007). O que é Deficiência. São Paulo: Editora Brasiliense. Diniz, D., & Santos, W. (2010). Deficiência e direitos humanos: desafios e respostas à discriminação. In D. Diniz & W. Santos (eds). Deficiência e Discriminação (pp. 19–63). Brasília: LetrasLivres, EdUnB. Dokumaci, A. (2017). Vital affordances, occupying niches: an ecological approach to disability and performance. Research in Drama Education: The Journal of Applied Theatre and Performance 22(3), 393–412. Ellison, N. B., Steinfield, C., & Lampe, C. (2007). The benefits of Facebook ‘friends’: social capital and college students’ use of online social network sites. Journal of Computer-Mediated Communication 12(4), 1143–1168. Erevelles, N. (2011). Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. New York: Palgrave. Erevelles, N., & Minear, A. (2010). Unspeakable offenses: untangling race and disability in discourses of intersectionality. Journal of Literary & Cultural Disability Studies 4(2), 127–145. Facioli, L. R., & Miskolci, R. (2015). Conectadas: experiência de subalternidade e ajuda mútua ­feminina online entre mulheres de classes populares. Mediações 20(2), 129–159. Foucault, M. (1998). The History of Sexuality Volume 1: The Will to Knowledge. London: Penguin Books. Gardou, C. (2006). Quais são os contributos da Antropologia para a compreensão das situações de deficiência? Revista Lusófona de Educação, n.8, pp. 53–61. Gavério, M. A. (2017). Nada sobre nós, sem nossos corpos!: o local do corpo deficiente nos Disability Studies. Revista Argumentos, 14(1), 95–117. Gentili, P. (ed). (2016). Golpe en Brasil: Genealogía de uma Farsa. Ciudad Autónoma de Buenos Aires: CLACSO; Fundación Octubre; UMET, Universidad Metropolitana para la Educación y el Trabajo. Geraldes, E. C., Ramos, T. R. O., Silva, J. D., Machado, L. M. M., & Negrini, V. (orgs). (2016). Mídia, Misoginia e Golpe. Brasília: FAC-UnB. Hine, C. (2000). Virtual Ethnography. London: Sage. Hine, C. (2015). Ethnography for the Internet: Embedded, Embodied and Everyday. London: Bloomsbury Academic. Illouz, E. (2007). Intimidades Congeladas: las Emociones en el Capitalismo. Buenos Aires: Katz Editores. Kittay, E. (1999). Love’s Labor: Essays on Women, Equality and Dependency. New York: Routledge. Linton, S. (1998). Claiming Disability: Knowledge and Identity. New York: University Press. Lupton, D. (2017). Digital Bodies. In M. L. Silk, D. L. Andrews, & H. Thorpe (eds). Routledge ­Handbook of Physical Cultural Studies (pp. 200–208). Abingdon, UK and New York, NY: Routledge. McQuire, S. (2008). The Media City: Media, Architecture and Urban Space. London: Sage Publications. McQuire, S. (2015). O direito à cidade em rede: redes digitais e espaço público urbano. In L. Pelúcio, H. Pait, & T. Sabatine (eds). No Emaranhado da Rede: Gênero, Sexualidade e Mídia – Desafios Teóricos e Metodológicos do Presente (pp. 248–285). São Paulo: Annablume. McRuer, R. (2006). Crip Theory: Cultural Signs of Queerness and Disability. New York: New York ­University Press. McRuer, R. (2018). Crip Times: Disability, Globalization, and Resistance. New York: New York ­University Press. Mello, A. G., & Nuernberg, A. H. (2012). Gênero e Deficiência: interseções e perspectivas. Revista Estudos Feministas 20(3), 635–655.

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‘With the knife and the cheese in hand!’ Mello, A. G., Fernandes, F. B. M., & Grossi, M. P. (2013). Entre pesquisar e militar: engajamento político e construção da teoria feminista no Brasil. Revista Ártemis XX(1), 10–29. Mello, A. G. (2016). Deficiência, Incapacidade e Vulnerabilidade: do capacitismo ou a preeminência capacitista e biomédica do Comitê de Ética em Pesquisa da UFSC. Ciência & Saúde Coletiva 21(10), 3265–3276. Mingus, M. (2010). Reflections on an opening: disability justice and creating collective access in Detroit. INCITE! Blog. Retrieved from https://inciteblog.wordpress.com/2010/08/23/reflectionsfrom-detroit-ref lections-on-an-opening-disability-justice-and-creating-collective-­a ccess-indetroit/ on 30 October 2018. Miskolci, R. (2016a). Estranhos no paraíso: notas sobre os usos de aplicativos de busca de parceiros sexuais em San Francisco. Cadernos Pagu, Campinas, n.47, e164711. Miskolci, R. (2016b). Sociologia digital: notas sobre pesquisa na era da conectividade. Contemporânea – Revista de Sociologia da UFSCar 6(2), 275–297. Miskolci, R., & Balieiro, F. F. (2018). Sociologia Digital: balanço provisório e desafios. Revista Brasileira de Sociologia 6(12), 132–156. Nussbaum, M. C. (2007). Las Fronteras de la Justicia: Consideraciones sobre la exclusion. Barcelona: ­Ediciones Paidós. Oberle, G., Seelman, K. D., Morris, M. W., Bergman, A. I., Brady, P., Button, C., & Priaulx, B. (1993). Study on the financing of assistive technology devices and services for individuals with disabilities. A report to the President and the Congress of The United States, March 4th, 1993, National Council on Disability. Retrieved from https://ncd.gov/publications/1993/Mar41993 on 30 October 2018. Otero, E. (2016). “Le Pasquín Poético” 2016 / Miriam Vega: “No es fácil someter al cuerpo al acto de performar”. TAMTAM Press, June 4, 2016. Retrieved from https://tamtampress.es/2016/06/04/ le-pasquin-poetico-2016-miriam-vega-no-es-facil-someter-al-cuerpo-al-acto-de-performar/on 30 November 2018. Pait, H., & Laet, J. (2015). Formas sociais, subjetividade e ação: buscando modelos para uma nova política democrática no Brasil. In L. Pelúcio, H. Pait, & T. Sabatine (eds). No Emaranhado da Rede: Gênero, Sexualidade e Mídia – Desafios Teóricos e Metodológicos do Presente (pp. 225–248). São Paulo: Annablume. Pereira, A. M. B. A. (2008). A viagem ao interior da sombra: deficiência, doença crônica e invisibilidade numa sociedade capacitista. Master thesis in Sociology. Universidade de Coimbra, Coimbra, Portugal. Pollard, N., & Block, P. (2017). Who occupies disability? Cadernos Brasileiros de Terapia Ocupacional 25(2), 417–426. Régis, H. C. B. (2013). Mulheres com deficiência intelectual e a esterilização involuntária: de quem é esse corpo? Master thesis in Psychology. Federal University of Santa Catarina, Florianopolis, Brazil. Sheldon, A. (2016). Estudos da deficiência para a “era da austeridade”. In B. S. Martins & F. Fontes (eds), Deficiência e Emancipação Social: para uma Crise da Normalidade. Coimbra: Edições Almedina. Shpigelman, C. N., & Gill, C. J. (2014). Facebook use by persons with disabilities. Journal of ­Computer-Mediated Communication 19, 610–624. Silva, C. A. A. (2012). Cultura Surda: Agentes Religiosos e a Construção de uma Identidade. São Paulo: Terceiro Nome. Van Dijck, J. (2016). La Cultura de la Conectividad: una História Crítica de las Redes Sociales. Buenos Aires: Siglo Veintiuno Editores. Vega, M. (2017). Cuerpo que rompe cuerpo: el texto protésico. Lectora 23, 197–226. Wolbring, G. (2008). The politics of ableism. Development 51, 252–258.

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20 AUSTRALIA’S TREATMENT OF INDIGENOUS PRISONERS The continuing nature of human rights violations in West Australian jail cells Hannah McGlade Introduction Colonisation throughout Australia was based on the dispossession of Indigenous people from their lands, without treaty or lawful settlement, and achieved through means that included the widespread incarceration of Indigenous people whose resistance was met with brutal force (Short, 2016; Dwyer & Ryan, 2016; Nettelbeck & Ryan, 2018). Massacres of men, women and children by colonial governments and others were known to have occurred across the country during frontier times (Ryan et al., 2017) and this historical knowledge of genocide and settler-violence is only growing (Brennan, 2018). The United Nations Special Rapporteur on Indigenous Peoples, citing research from the Australian Institute of Aboriginal and Torres Strait Islander Studies, states: During colonization, Aboriginal Australians were murdered, raped and enslaved for forced labour. Massacres occurred across Australia and, in the course of frontier c­ onflict, it is estimated that about 2,000 British colonizers and over 20,000 indigenous A ­ ustralians suffered violent deaths. (Human Rights Council, 2017, p. 3) If not killed or murdered, Indigenous men and also boys were incarcerated in very harsh conditions, such as the infamous Rottnest Island Native Prison off the coast of West ­Australia (Green, 1999; McGlade, 2000); the site of incarceration and mass burials that Aboriginal ­people had to campaign and protest over decades for recognition (McGlade, 2018). Incarceration was a pivotal tool used to facilitate dispossession, and oppress and subdue ­Indigenous resistance to colonialism. Aboriginal children were also separated from their mothers and placed or detained in missions that resembled prison-like institutions (Pilkington & ­Garimara, 2002; McGlade, 2017). The history of Aboriginal and Torres Strait Islander ­children forcibly removed from their families, also known as the ‘Stolen Generations’, was later found by the Australian Human Rights Commission to constitute cultural genocide, for which the state is liable to make full and proper reparations (Lavarch, 1997). The ‘Stolen Generations’ marks a period of history that began in the early 1900s but did not end until the 1970s (Lavarch, 1997; AIHW, 2018b). Presently Indigenous people make up three percent of 274

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the population and speak over 400 different languages, but are located mainly in the urban centres of ­Australia; they have not recovered from the impact of this history, with inequalities increasing in recent times, particularly for members of the Stolen Generations and their descendants (Human Rights Council, 2017, p. 3; AIHW, 2018b). Indigenous people have still not had the benefit of a comprehensive reparations’ s­ettlement for cultural genocide and atrocities committed by colonial governments. These past practices are not yet fully denounced as Indigenous people are denied fundamental human rights that are both inherent and also critical to overcoming past legalised systems of dispossession, racial discrimination and state sanctioned violence and abuse. The UN Special Rapporteur on the Rights of Indigenous Peoples, in a country report to the Australian government, found widespread racism perpetrated against Aboriginal people, including from the medical systems, and the failure to respect people’s right to ‘self-determination and full and effective participation in social life’ (Human Rights Council, 2017). Denial of this institutional racism against Indigenous people has a long a history in Australia and there are long-standing tensions in how far this recognition will go. In 1992, the High Court of Australia in a case widely known as Mabo rejected the ­offensive racist notion of Terra Nullius that underpinned colonial dispossession, finding that it was contrary to ‘international standards and the fundamental values of our common law’ (McGlade, 2003, p. 119) and constituted ‘the darkest aspect of the history of this nation’ (McGlade, 2003, p. 125). In response the federal government announced legislation, the Native Title Act 1995, which recognised a form of limited property tenure to many Indigenous peoples, but also allowed non-Aboriginal courts to ‘extinguish’ without compensation peoples’ ancestral rights and connection to lands (McGlade, 2003, p. 122). In response to the Mabo case, the government also announced a package of social justice reform; however, this has never eventuated and race relations deteriorated to such a point that in 1998, Australia became the first western country issued with an ‘early warning/urgent action’ procedure by the United Nations Committee on the Elimination of All Forms of Racial Discrimination (McGlade, 2003, p. 120). While the states of Victoria, Northern Territory and South Australia have recently ­commenced treaty negotiations, Australia is considered the only common law country in the world to have dispossessed Indigenous people without a treaty. Constitutional reform, a Makaratta or Truth Telling Commission and the entrenched protection of human rights also remain outstanding issues on the Indigenous rights agenda (Human Rights Council, 2017). This denial of human rights has resulted in continuing and significant health inequality and disadvantage, including intergenerational trauma, and is affecting the lives of Aboriginal people today. A commitment to ‘close the gap’ on inequality made by ­successive federal governments in this context has not delivered on the promise to address the d­ isadvantage. ‘Closing the Gap’ is an Australian government programme that aims to reduce inequalities in ­education, health, employment and so on of Aboriginal and Torres Strait Islander ­people (Holland, 2018). Yet, Indigenous people continue to experience significant i­nequality, ­including in relation to discrimination, child removal, over-incarceration and health (CERD, 2018). Additionally, the policy commitment from government has been criticised for its lack of proper planning and implementation (CERD, 2018). Negligence of Indigenous peoples’ human rights and apparent disregard of advice from United Nations human rights mechanisms is a serious challenge to Indigenous people and the wider community, impacted by intergenerational trauma and mass incarceration. In 2017, the United Nations Committee on the Elimination of All Forms of Racial Discrimination (CERD, 2017) expressed concern that Indigenous women constituted the 275

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fastest-growing prison population in Australia and recommended the government address this crisis by ­setting ‘ justice targets’ in the ‘Closing the Gap’ strategy (Holland, 2018) and ensuring compliance with the UN Rules for the Treatment of Women Prisoners (i.e. ­Bangkok Rules). More than thirty years ago, the high levels of incarceration and Aboriginal people dying in custody became the subject of a Royal Commission into Aboriginal Deaths in C ­ ustody (1987–1991) (Skyring, 2011). The Commission was announced following nationwide ­protests and the efforts of Indigenous leaders such Helen Corbett to establish the National Committee to Defend Black Rights (NCDBR) (Skyring, 2011, p. 276). The Royal Commission called for s­ entencing and imprisonment as a matter of last resort only and advised Australian governments to address over-policing of Aboriginal people and also the underlying causes of offending. The Commission did not stem the tide of deaths in custody nor ­Indigenous ­incarceration, which has doubled since it made almost 300 recommendations to address over-­incarceration (­Martin, 2017). In 2017, the Australian Law Reform Commission (ALRC) again recommended substantial reforms to address Indigenous people’s interaction with the criminal justice system and incarceration rates (ALRC, 2018). The ‘Pathways to Justice’ report makes significant recommendations, including in relation to treatment of Indigenous prisoners with mental illness; many of whom are being indefinitely detained in Australian prisons under laws that breach international human rights standards (ALRC, 2018). The historical effects of settler colonialism and present intersections between disabilities, racism and indigenous incarceration have long been institutionally neglected. In terms of activism, attention of campaigners and academic researchers is still focused on understanding and documenting such deaths, for example, through the Deathscapes Project that maps intersections of ‘race’ and violence in settler states like Canada, Europe, Australia and the United States of America (USA) online.1 At the time of writing, the national and international legal spotlight is on the inquest into the death in custody of a New South Wales Indigenous man, David Dungay (Evans, 2018). His family and supporters had to wage an online social media, print and activist campaign for over two years for an inquest into his death which occurred in 2015. Notwithstanding having mental illness, including ­psychosis and schizophrenia, Dungay was violently restrained and killed in Long Bay prison by c­ orrectional authorities in 2015 (Davidson, 2018). David Dungay was twenty-six years old and only weeks away from prison release. He had been eating biscuits and was told to stop, ostensibly because of concern over his diabetes and sugar levels by the nurse, but did not do so (Davidson, 2018). Prison officers forcibly moved him from his cell and restrained him face down on his mattress, then chemically restrained him through nurse’s injection of a sedative. Throughout this, David was heard repeatedly calling out that he could not breathe but to no avail. It was revealed in evidence, ­before the coroner’s inquest into this death in custody, that the prison had a blanket policy not to differentiate between mentally well inmates housed in other units of Long Bay Goal and the mentally ill inmate-patients housed in the psychiatric ward (Fuller  & Davidson, 2018). The circumstances of David’s violent death were captured on video footage and were shown on television in Australia and the world (Kwai & Rychter, 2018). On the harrowing and distressing video, David is heard repeatedly stating, ‘I can’t breathe!’ Those words were also the rallying cries of the USA Black Lives Matter movement, protesting against police brutality and loss of black lives. This came about after Eric Garner, an unarmed black man, repeatedly said that he could not breathe and who died in 2014 while being restrained by

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police. According to a Black Lives Matter movement spokesperson, Hank Newsome, his death is much like the deaths of many Black people in the USA. He stated: It’s the same story, different soil. Eric Garner called for his life 11 times. David Dungay called for his life 12 times. These eerie similarities cannot go ignored. It’s the same thing from Long Bay to the USA. In Sydney, his name is David Dungay. In New York City, his name would be Eric Garner. (NITV, 2018) In this chapter, I focus on those neglected stories and provide case studies from West A ­ ustralia (WA), which has the highest rate of incarceration of Aboriginal people in Australia. I will examine several prison sites to highlight the experiences of Indigenous prisoners and demonstrate the severity of the problem and the imperative of human-rights based reforms. The reports and cases cited are not isolated examples of system failure but reflective of the ongoing nature of ‘racial’ oppression and mistreatment of Indigenous people, coupled with neglect of human rights standards. Indigenous people as a result of colonisation and ongoing racial oppression now have high levels of impairments, including cognitive impairments and mental illness, of which no account is taken by the justice and correctional systems. Their intersectional identities are instead responded to, as a matter for incarceration, punishment and even death.

Bandyup Women’s Prison In WA, the Chief Justice of the Supreme Court, Wayne Martin, has described the shocking situation of Aboriginal women as ‘the fastest growing cohort in the prison system’ (Martin, 2017). It is well known in Aboriginal communities that their women have been incarcerated at the Bandyup women’s prison in very large numbers for many decades with no culturally appropriate support or interventions. Bandyup was for many years WA’s only female only prison for all security classifications and it is located in the Perth suburb of West Swan. It has been the subject of considerable press attention and also concern as outlined by reports of the Office of the Inspector of Custodial Service (OICS), including the most recent 2017 ­inspection report (OICS, 2017b). In this report it was noted that Bandyup was in crisis from 2011 to 2016, housing, at times, almost double the number of women it had been designed for (OICS, 2017b). For many years Bandyup was the sole maximum-security women’s prison in the state, but it d­ eteriorated, leading to dangerous over-crowding and run-down conditions akin to ‘torture’ (Wahlquist, 2014). As WA’s Inspector of Custodial Services has noted since 2014 (OICS, 2014a), this prison has been structurally and institutionally neglected, leading to human rights abuses that affected women in particular (OICS, 2018b; Bennet, 2018). Although ­overcrowding at Bandyup has eased with the opening of a second women’s prison, ­Melaleuca, problems remain and are especially relevant to Aboriginal women who ­currently comprise forty ­percent of the Bandyup population and make up fifty percent of the M ­ elaleuca prison (OICS, 2018a; 2018b). Some issues previously identified by the OICS (2014a), specific to Aboriginal women, include lack of designated cultural places, language programmes and access to traditional foods but also more serious issues such as overcrowding and human rights abuses. According to the ‘Pathways to Justice’ report (ALRC, 2018) there are significant ‘drivers’ linked to Aboriginal women’s incarceration including: a) family violence and sexual abuse; b) mental health and cognitive impairment and c) poverty and homelessness; and to this, one

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can add the more structural and institutional factors of living in ‘racially’ violent and patriarchally unequal post-colonial society (Baldry & Cunneen, 2014). Aboriginal family violence is thus recognised by the Australian Law Reform Commission to be a key driver of incarceration of Aboriginal men and women (ALRC, 2018). Additionally, it particularly affects women as Aboriginal women prisoners have a past history of victimisation and trauma, having experienced sexual assault and family violence, as children and or adults. Research in WA suggests that around ninety percent of Aboriginal women prisoners had experienced family violence and or sexual assault in their lifetimes (ALRC, 2018, p. 351). This issue was vividly highlighted by the shocking death of young Ms Dhu in a WA police cell in 2014 (see Bui et al., 2017). The coroner’s report and other evidence explained how Ms Dhu had been detained for the ‘offence’ of non-payment of fines and required urgent medical assistance related to injuries she had suffered from intimate partner violence (Bui et al., 2017). The police and medical staff stigmatised her as an Aboriginal woman and refused to treat her. They ignored her suffering, her pleas and cries for help as she was dying, ­claiming instead that she was ‘faking’ illness (Bui et al., 2017). The hospital staff neglect was also presented into evidence. They showed racism in their conduct, failing to undertake basic medical procedures, such as taking of her temperature, which would have showed Ms Dhu to be suffering a serious infection. Ms Dhu died a most painful and horrific death within forty-eight hours after being taken into custody and her death, like that of Dungay’s, is also ­evidenced by CCTV footage that the State Coroner initially refused to release (Bui et al. 2017). Aboriginal women, having experienced substantial violence in their lives, are also ­being incarcerated in significant numbers for violence related offences. However, Bandyup lacks any Aboriginal specific diagnostic and treatment programs, notwithstanding the over-­ representation of Aboriginal women in prison and the importance of such programs for parole eligibility and prison release. Additionally, one aspect of programmes, and prisons in general, is that they are not focused on high rates of impairment, histories of violence and creating disability inclusive settings (Shepherd et al., 2017). Indigenous people in Australia have some of the highest rates of dementia and cognitive impairment (Smith et al., 2008) and these groups are disproportionally over-represented in the criminal justice system (McCausland et al., 2017). Aboriginal women in particular experience psychological disability at rates double that for Indigenous men, although this is infrequently recognised (ALRC, 2018, p. 354). According to the National Aboriginal and Torres Strait Islander Legal Services (NATSILS), the numbers of Aboriginal and Torres Strait Islander women with mental health issues, cognitive impairments, learning and undiagnosed disabilities are entering the criminal justice system at an unpreceded rate (Walters & Longhurst, 2017; ALRC, 2018, p. 354). Indigenous women with cognitive impairment may have the highest rate of contact with the criminal justice system, and are significantly over-represented compared to men (ALRC, 2018, p. 354). Notwithstanding Aboriginal women’s high level of need, the services at ­Bandyup were reactive, only meeting the basic needs of the most distressed and women suffering from depression or other psychological conditions were missing out on holistic support. There was no system of holistic mental health care, other than access to Western psychiatry, offered to Aboriginal women (ALRC, 2018). Aboriginal women advocates have voiced concern, in the local community, that incarcerated women are being medicated with anti-psychotic medications in the absence of culturally appropriate mental health care, and the impact these medications can have in terms of links with conditions such as diabetes which are especially high amongst Aboriginal people (ALRC, 2018). 278

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The mistreatment and human rights abuses of Aboriginal women prisoners at Bandyup is intersectional in nature and leads to more trauma and impairment as the following case examples illustrate. In the first case from 2017, which has been under investigation by OICS (and various government departments), a young Aboriginal woman prisoner who was only twenty years old and in a state of severe mental distress, was transported some thirty ­k ilometres from Bandyup to a psychiatric hospital naked, handcuffed and bleeding from menstruation (Flint, 2018b). She was received at the secure hospital facility and likely to have been seen and treated by male guards and staff at the hospital (Flint, 2018b). Questions have thus been raised about the outsourcing of transport of prisoners to commercial security firms and lack of gender and human rights training. In the second case, widely reported in the press, an Aboriginal woman prisoner in 2018 was forced to give birth alone and without pain relief in her prison cell (Flint, 2018a). The woman, who was thirty-six weeks pregnant, had an alarm in her cell but the prison staff claimed they were unable to enter to give assistance (Flint, 2018a). An investigation is underway into the case, but it is clear that this woman’s life, and also that of her unborn child, was placed at risk in this manner. According to unofficial reports in the Aboriginal community, the baby was quickly removed from her mother by the state, consistent with the exceedingly high removal of Aboriginal infants from their mothers, a practice condemned by various UN experts and mechanisms (Funston & Herring, 2016; McGlade, 2017). In Australian public discourses related to Aboriginal people and crime, there is little acknowledgement of the impact of incarceration on children, or that families and especially mothers are involved. The impact of incarcerating Aboriginal mothers is not only extremely traumatic for the mother but also has ‘dire consequences for their children and families, and is likely to perpetuate intergenerational offending’ (Wilson et al., 2017, p. 12). In a WA study with Aboriginal mothers in prisons, it was confirmed that these women had experienced high levels of violence and victimisation in their lives prior to their incarceration, and the fifty-four women interviewed in the research had a total of 174 children, more than half of whom they had been caring for at the time of their incarceration (Wilson et al., 2017). They noted that children of prisoners are at greater risk of developing mental and psychological illness and have a higher likelihood of entering the criminal justice system in their own lives (Wilson et al., 2014; 2017). The above cases illustrate the prison authority’s lack of respect, moreover contempt, for Aboriginal women’s bodily integrity, right to dignity and humane treatment in accordance with human rights laws, as well as impact on creation of disability. The cases highlight racialised and sexualised violence engaged in by the correctional authority toward Aboriginal women still in practice, and women being denied the status of equal citizens with rights. The ongoing separation of Aboriginal mothers from their children, once recognised as a form of cultural genocide, continues and is entrenched through the active criminalisation of the mothers. There is also a lack of proper independent advocacy for Aboriginal women prisoners, and the Office of the Inspector of Custodial Services does not employ Aboriginal women nor engage in significant community outreach towards them. In 2018, the United Nations Committee on the Elimination of Discrimination Against Women (CEDAW) in their review of Australia, recognised that Indigenous women are far more likely to be incarcerated than non-Indigenous women as well as having higher rates of mental and physical health conditions, including rates of suicide (CEDAW, 2018). The UN advised Australia to strengthen early intervention, prevention and diversion strategies as well as non-custodial alternatives to detention (CEDAW, 2018). Australia must also develop further a specific National Action Plan to address violence against Aboriginal women 279

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and finalise the National Strategic Framework for Aboriginal and Torres Strait Islander ­Peoples Mental Health and Social and Emotional Wellbeing (CEDAW, 2018), and guarantee ­appropriate resources for its implementation and address intergenerational trauma. In the following section, I examine the impact of incarceration on Indigenous children and youth, who are overwhelmingly incarcerated in circumstances related to their own mothers’ treatment, including child removal and family violence.

Banksia Hill Detention Centre The rate of over-representation of Aboriginal children and youth in the criminal justice system is severe and showing no sign of rebate. Abuse of Aboriginal children in detention became the subject of national public attention and international condemnation by the UN Office of the High Commissioner for Human Rights in 2016 (Carlson et al., 2017; Fitz-­Gibbon, 2018). This was following the appalling revelation of violence and abuse of ­Aboriginal youths at the Don Dale detention centre in the Northern Territory in a television program (Carlson et al., 2017) that led to a Royal Commission (RC, 2017) and the Australian government signing the UN Optional Protocol to the Convention Against Torture in 2017. According to The Law Society of Western Australia (2016, p. 58): In 2013–2014, Indigenous young people in Australia were 26 times more likely to be in detention than non-Indigenous young people. Aboriginal and Torres Strait Islander young people make up just over 5 percent Australia’s population (10–17 years old), but 59% of those are in detention. In WA, the incarceration of Aboriginal children and youth is double that of the national ­average and the mandatory detention laws in WA are contributing to the situation and must be repealed with imprisonment being a measure of last resort. The age of criminal ­responsibility being set at a mere ten years of age is also too low and advice from the UN Committee on the Rights of the Child to Australia should be implemented with twelve years of age being the lowest acceptable minimum age of responsibility (Amnesty I­ nternational, 2015, p. 17). Amnesty International (2015) made a number of recommendations, including that a justice reinvestment approach be adopted (an investment into the prevention of crime in the community), mandatory detention laws be repealed and that the United N ­ ations ­Optional ­Protocol to the Convention on the Rights of the Child be adopted to allow ­individual complaints. Indigenous girls face their own set of human rights challenges that tend to be neglected. The latest figures indicate that nationally sixty-five percent of girls in detention are from an Indigenous background (AIHW, 2018a). According to an Amnesty International (2017) briefing and Australian Institute of Health and Welfare (AIHW, 2018a) there are serious issues facing girls who have been put into detention. For example, numerous reports are made of solitary confinement, sexual harassment, sexually derogatory behaviour from male staff and strip search procedures are utilised which are not appropriate and re-traumatising for girls, many of whom have experiences of sexual abuse and rape (AIHW, 2018a; Amnesty International, 2017). Amnesty International (2017) notes that Australia’s recent commitment to the United Nations Optional Protocol to the Convention against Torture (CAT) will require the establishment of a National Preventative Mechanism to improve the situation of prisoners, including the specific needs of Indigenous prisoners. I want to focus on why this is important next. 280

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The Banksia Hill detention centre in WA is a juvenile facility for boys and girls aged 10 to 18 plus. In 2018, it was described by the OICS as ‘unstable’, ‘volatile’ and ‘the state’s most complex custodial facility’ and Aboriginal children and youth comprise seventy percent of the detainees (OICS, 2018c, p. iii). Recent years have seen riots at the detention centre and youth involved in the riots have been subjected to extensive punishment by way of solitary confinement which according to Amnesty International breaches international human rights standards (Amnesty International, 2017; OICS, 2017c). Several Indigenous youth detainees, as punishment for their role in the riots, have been held in solitary confinement for periods of time that were contrary to detention regulation, and in one case, a youth was held more than a year in an isolated unit of the prison (See also OICS, 2017c). The OICS acknowledged that three youths (known to be Indigenous) had been detained since May 2017 and described the Intensive Supervision Unit (ISU) as, ‘counter-therapeutic and totally at odds with the trauma informed model of care’ (OICS, 2018d, p. vii, p. 41). It noted that there was a p­ eriod of detention of about ten days that breached international human rights law standards (but not to the extent that Amnesty International claimed) (OICS, 2017c; 2018a). These riots have taken place in the context of ongoing serious allegations such as self-harm, suicide and alleged sexual assaults (OICS, 2017c). Banksia is also lacking in Aboriginal focus, notwithstanding that the majority of youth incarcerated are Aboriginal. Aboriginal culture should be properly reflected in the service operations but there was no programme of visiting Aboriginal Elders and traditional foods were limited to once a year only during National Aboriginal and Islanders Day Observance Committee (NAIDOC) week (OICS, 2018c p. 34). Aboriginal staff at Banksia were also criticised for building relationships with the Aboriginal youth detainees (OICS 2017c; OICS, 2018c, p. 35). In Banksia, girls were particularly disadvantaged both due to behaviour of boys and linked to their gender, because of lack of facilities catering to their needs (OICSc, 2018). The OICS (2018c) report does not mention disability but refers to mental health and substance abuse issues for which there is no counselling. They also mention Foetal Alcohol Syndrome Disorder (FASD) in terms of cognitive impairments: FASD is characterised by severe, pervasive neurodevelopmental impairment due to ­prenatal alcohol exposure. Impairment in executive function, memory, language, ­learning and attention in young people with FASD can result in a range of difficulties including understanding cause and effect, learning from past experiences and decision making. These impairments can, in turn, lead and contribute to problems at school and with employment, mental health, social exclusion, substance misuse and early and repeated engagement with the law. (Bower et al., 2018, p. 1) Bower et al. (2018) noted a high proportion of the Aboriginal youth incarcerated have (FASD) and in Banksia, ‘more than a third have Foetal Alcohol Spectrum Disorder (FASD) and 90 per cent have significant neurodevelopmental impairment’ (OICS, 2018c, p. iii). Bower et al. (2018) found that of the ninety-nine young people who undertook their study in Banksia (from 2015–2016), thirty-six percent were diagnosed with FASD. Most of the youth were Aboriginal youth, and for most of them, this was the first time they had been assessed and diagnosed with FASD. There were limitations in the study, including that most youth participating were male, but Bower et al. (2018, p. 1) argue, ‘This is the highest reported prevalence of FASD in a youth justice setting worldwide.’ Bower et al. (2018) did not appear to have an active engagement with the ­Aboriginal community consistent with Indigenous research guidelines and ethics. Their recommendations 281

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were limited to the development of correctional policy and practice responses to i­dentify affected youth in detention, to improve care, management, therapeutic interventions ­following release and the greater education of the harms of alcohol use in pregnancy (Bower et al., 2018, p. 8). Future research should focus on Indigenous human rights analysis and the imperative of Aboriginal self-determination, justice reinvestment and the criminal justice diversion of youth with disability, away from the criminal justice system and towards ­community-based mechanisms (Rivas Velarde et al., 2018). Australia has yet to heed the advice of the UN Expert Mechanism on the Rights of ­Indigenous Peoples (EMRIP): States should work with Indigenous people to develop alternatives for ­Indigenous ­children in conflict with the law, including in the design and implementation of ­culturally ­appropriate juvenile justice services… including restorative justice and ­Indigenous juridical systems. (Amnesty International, 2017, p. 27) The United Nations’ advice is also reflected in the 2018 ALRC’s ‘Pathways to Justice’ report mentioned above (ALRC, 2018). The Inquiry made important recommendation to address Indigenous incarceration including that the Commonwealth and all states and territories support an independent justice reinvestment body to promote community-led solutions to address the drivers of crime. This includes the child protection system that is increasingly removing Aboriginal children from their families and was recognised as contributing to the high rate of incarceration of Aboriginal children, youth and adults (ALRC, 2018). As such, the ALRC further recommended a national inquiry into child protection and correlation to youth incarceration (ALRC, 2018). Detention centres are no place for so many Aboriginal children and youth affected by ­significant trauma and FASD. They are being routinely incarcerated for often minor ­offending in environments that do not support their cultural, psychological, social and ­physical needs. This will only contribute to recidivism and their continued incarceration as adults by the criminal justice system. In the next section I will focus on men’s incarceration, disability and its potential for fatal consequences.

Casuarina Prison The Royal Commission into Deaths in Custody called for the establishment of Aboriginal Justice Advisory Committees (also known as AJACs), allowing for Aboriginal participation and advisory capacity in the criminal justice system (Martin, 2017). WA established an AJAC but was also the first state in Australia to disband it. It now has the highest level of Aboriginal incarceration in Australia as a result of racial discrimination in the criminal justice system (Martin, 2017). In this section, I want to focus on why such structures of justice are important with regards to intersectionality and discrimination against Aboriginal men. Double discrimination against Aboriginal men with disability was especially highlighted in the 2014 wrongful imprisonment of Gene Gibson. Mr Gibson was an Aboriginal man from the remote Gibson Desert who was set free from Casuarina prison after serving almost five years for a murder that he did not commit. Gene was eighteen but barely spoke English and had ‘significant and pervasive’ cognitive impairment, but was repeatedly questioned by police until he made a confession (Kagi, 2018). In 2015, the Corruption Crime Commission was heavily critical of his arrest, later deemed a miscarriage of justice by the Supreme Court of WA and awarded monetary compensation. Gene’s family, disability advocates and the 282

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deceased victim’s mother celebrated his release and were also scathing of the police conduct (Kagi, 2018). Gene Gibson was released from Casuarina prison in April of 2017 and received a personal apology from the Police Commissioner who promised reforms for Indigenous prisoners (Tulich et al., 2017). The Casuarina prison for men is the main maximum-security prison located in the Perth suburb of Casuarina and in 2017 was described as ‘over-stretched at every point’ (OICS, 2017a, p. iii). Measured by national and international standards, Casuarina, like other WA prisons, was ‘chronically overcrowded’ (OICS, 2017a, p. iv) with remand prisoners (not yet sentenced) making up more than forty percent of the prison population (OICS, 2017a, p. vi). In the twelve months preceding the 2016 inspection of Casuarina, the prison population had increased by twenty percent. Strikingly, Aboriginal men made up a third of the Casuarina population and thirty-one percent of the Aboriginal prisoners came from outside of the Perth area (OICS, 2017a). While the prison previously had a dedicated Aboriginal meeting place, it was closed in 2014 for reported ‘security reasons’ (OICS, 2017a, p.31). Additionally, the Aboriginal Visitors Scheme had been halved since 2013 (OICS, 2017a, p. 31) affecting families and there were very few Aboriginal staff being employed at the prison (OICS, 2017a, p. 55) increasing a sense of isolation for prisoners. Concerns were also noted in relation to the Special Handling Unit (SHU) with prison records indicating that prisoners were being kept in the SHU in excess of 28 days, the maximum time frame permitted by prison regulations (OICS, 2017a). Prisoners represent a high-risk group for suicide, with remand prisoners having higher rates of suicide (OICS, 2017a, p. viii) and Casuarina prison, in particular, lacked face-to-face screening services for new prisoners as well as counselling services (OICS, 2017a). The above was illustrated by the Coronial Inquest into the death of Jayden Bennell, which noted the lack of mental health care in the months leading to his death (Coroner’s Report, 2017). Jayden was found deceased in 2013 at Casuarina when he was only twenty years old. At the time of his death, Jayden had been sentenced under the state’s mandatory detention laws – the subject of long-standing attention and criticism. Jayden’s death is one of many hundreds of deaths that have occurred since the earlier mentioned Royal ­Commission into Aboriginal Deaths in Custody, although it is difficult to know exactly how many deaths have occurred. The authorities have failed to establish a ‘deaths in custody’ database since the r­ eport in 1991, even though it was recommended that a database be established.2 The Coroner noted that Jayden had not seen a psychiatrist for seven months when he committed suicide, even though he had been diagnosed at seventeen with depressive d­ isorder (Corner’s Report, 2017, p. 5) and was acknowledged to have chronic risk factors a­ ssociated with suicide being young and male with history of mental health issues, ­Indigenous, ­sentenced and waiting further sentencing (Coroner’s Report, 2017, p. 44). Medical evidence was given to the Coroner that, ‘Jayden had many features known to indicate high risk of self-harm’ and it was important that he be assessed (Coroner’s Report, 2017, p. 49). The Coroner’s Report (2017) also mentions how Jayden was raised by a single mother with seven other children, had witnessed a lot of domestic violence in his childhood, that there was substance abuse in his life and that he had a long mental health history. The Coroner’s recommendations were that the Corrections department should invest more in psychiatry, that an overall emphasis be placed on holistic approaches and that it should employ Aboriginal mental health workers (Coroner’s Report, 2017, pp. 49–50). Yet, the Coroner declined to endorse the submission of the Bennell family that the recommendations of the Royal Commission into Aboriginal Deaths in Custody be considered (Coroner’s Report, 2017, p. 59). 283

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Jayden’s late grandfather, Eddie Bennell, who was a senior Indigenous leader, explained that for him it seemed as if the ‘policy of the Australian Government’ was to obstruct any progress that Aboriginal people made (Day, 2016). His observations sadly remained accurate many years later in 2017, as is clear from the advice of the UN Committee on the Elimination of all Forms of Racial Discrimination who urged Australia to adopt a ‘paradigm shift in its dealing with Indigenous people’ (CERD, 2017).

Conclusion This chapter has focused on various WA prison sites as part of the prison industrial c­ omplex, demonstrating the nature of the violations of the human rights of Aboriginal people with disability, as well as illustrated how disability is being created through the complex. The links between indigeneity, colonialism and disability in terms of violence and creation of disability are only beginning to be explored (Soldatic & Gilroy, 2018). Across Australia there is the appalling situation whereby Aboriginal people deemed mentally impaired are ­subjected to indefinite detention in prisons. According to a parliamentary submission in 2016 by the ­Australian Cross Disability Alliance (ACDA), there are approximately fifty Aboriginal people being indefinitely detained in prison psychiatric units across Australia (Frohmader & Sands, 2015, p. 5). In detaining people indefinitely in this manner, Australia is failing to comply with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006). The establishment and translation of the CRPD could lead to better treatment and health outcomes for Indigenous people with disabilities in white settler spaces (Rivas Velarde et al., 2018). As noted by the OICS (2014b), WA differs from the other states in that there is no limiting term of the period of detention that may occur. Furthermore, lawyers are not entering ‘unfitness to plea’ due to these indefinite timelines (OICS, 2014b). One of the most notorious cases concerned the Aboriginal man Marlon Noble, who was detained without a court case or conviction due to his cognitive disability for a period of ten years (McGaughey et al., 2017). There are many such cases and Aboriginal incarceration remains an important human rights issue for Australia, with the treatment of Aboriginal prisoners living with disability a critical test of the nation’s formal commitment to human rights and racial equality. The intersectionality to violence against women with disabilities, the warehousing of people with disabilities in the prison system and lack of care and services for people with disabilities leading to detention, imprisonment, inhumane treatment and death and intersectionality to ‘race’, ‘racialised’ experiences and intergenerational trauma beginning in childhood needs urgent investigation (Frohmader & Sands, 2015; Soldatic & Gilroy, 2018). This chapter began with the inquest into the death of David Dungay in Long Bay gaol, New South Wales, and how his life was made to matter by his family and community in the face of violence. As noted by the Deathscapes project, Dungay, suffering from schizophrenia and psychosis as well as diabetes and asthma, was being subjected to prison punishment for his ‘behavioural issues’ that took no account of his disability. Pugliese (2018) notes how he was issued with two ‘Proclamations’ by prison guards shortly before his death and the ­epistemic and physical violence that they must have represented to him in light of his ­d isability and his Aboriginal background. Proclamations mean that a prisoner has to place his hands through the prison door within thirty seconds, which someone with a mental health condition may not able to understand and may also cause them physical distress. These ­‘Proclamations’ are framed as ‘de-escalation’ techniques by the prison team, untrained in mental health or asphyxiation risks. Pugliese (2018) poignantly notes the use of the inflammatory term 284

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‘Proclamation’ once issued by Governor Arthur Phillip in his ‘Proclamation of the British Colony’ in Port Jackson on 26 January 1788. Pugliese (2018) also quotes Governor Lachlan Macquarie’s public ‘Proclamation of war’ against Aboriginal people on 4 May 1816, where he notes the order to make many ‘natives’ prisoners and to tie their bodies to trees. We may wish that the violence of the colonial past was behind us, but the treatment of ­Aboriginal prisoners with disability in Australia tells another story, showing vividly and ­cruelly the system of racialised punishment, underpinning the settler state, remains alive to this day. The increasing levels of incarceration, which can be best described as mass incarceration of Indigenous people, has severe and adverse impacts on families and entire ­communities, not yet given meaningful opportunity to recover from processes of cultural genocide since the advent of British contact. Australia is in serious breach of established international human rights conventions and laws and our standing as a member of the Human Rights Council is undermined and put into question by the human rights abuses ­documented. Incarceration and mistreatment of Aboriginal prisoners violates Indigenous people’s right to life, culture and integrity, causing further suffering and continued inequality – ­including in relation to high levels of mental illness and health distress. This is a most vicious cycle, one that violently abuses and takes black lives without apparent sanction.

Notes 1 See the Deathscapes project available at https://www.deathscapes.org, which also uses video, making it different from historical projects mapping massacre sites e.g. Ryan et al. (2017). It should be noted that I am on the advisory board of this project. 2 A database was not set up until 2018 by The University of Queensland. See Deaths in Custody project available at https://deaths-in-custody.project.uq.edu.au/.

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21 ‘LCHAD POLAND’ AND THE FIGHT AGAINST INEQUALITY The role of internet advocacy in cases of a rare genetic condition Anna Chowaniec-Rylke Introduction Life with LCHAD 1 is not the easiest one, everything is a matter of time, organisation… until finally it becomes a way of life. In this group you will find many people who will always advise you, help you; use it, because it’s very valuable.2 According to the definition of the European Parliament, a ‘rare genetic condition’ is one that affects less than five in 10,000 individuals (Rodwell & Ayme, 2014, p. 5). Taking Polish demographic data from 2010, around 2.3 to 3 million people may suffer from rare genetic conditions in Poland alone.3 It is important to note, however, that medicine has so far discovered over 6,000 rare genetic conditions, which means that there are many patients in general terms, but few individual cases of each particular disease or disorder.4 Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency (LCHAD) is a rare metabolic disorder, and the worldwide birth prevalence is estimated at one in 250,000.5 However, around the Baltic Sea the frequency is higher; birth prevalence is predicted to be one in 120,000 in Poland and one in 20,000 in the Pomerania historical region located in Germany and Poland.6 LCHAD is a hereditary, autosomal recessive disorder, which means that if both parents are carrying a copy of the defective gene there is a 25% chance or a one in four chance in each pregnancy that the condition will affect the child.7 LCHAD was first diagnosed in Poland in the early 1990’s but a diagnosis was only possible when symptoms occurred and a child’s health was already rapidly deteriorating (­Sykut-Cegielska, 2006). Cross- border screening in the Pomeranian region was implemented in 2007–2013 through a European Commission programme (European Commission, 2015), and in 2014 ‘The Institute of Mother and Child’ in Poland included LCHAD in newborn screening programmes across the country (Ministry of Health, The Institute of Mother and Child, 2018). This led to faster detection, so children did not have to experience a long (and possibly life-threatening) process of diagnosis later in infancy when the first symptoms appear. It is hard to estimate how many lives were saved thanks to the implementation of this programme as many other rare metabolic diseases (which can be diagnosed in newborn screening, such as Very long-chain acyl-CoA dehydrogenase deficiency, Medium-chain acyl-CoA 289

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dehydrogenase deficiency or organic acidemias) share similar signs and symptoms, meaning that diagnosis without screening is complicated. Although many families dealing with LCHAD share the same experiences, the Internet has become the platform to share them in Poland and thus can be seen as an invitation into the local and global biosocial community. Rabinow (2005) argues that we can see an emergence of ‘biosociality’, or a network of people establishing connections with each other based on their genetic makeup. In this discussed case, it is rather biosociality by proxy as the majority of LCHAD Facebook group users are not people with LCHAD but their parents (for the reasons I will explain in the following section). Parental activism and biosocial advocacy groups have become increasing influential, for example, Leiter (2004) discusses parental actions to ensure professional care at home and not in institutional environments in terms of early intervention programmes for children with disabilities and rights of parents. This activism and advocacy around political change is also happening in terms of rare genetic conditions, as Novas (2009) explains, outlining ­parents’ efforts in the development and introduction of orphan drugs. Thus, Vicari and ­Cappai (2016) present a case-study of health activism of a rare-disease patient organisation, their website, and how they have adopted digital media to ensure social and political influence. They found that digital media allowed a more bottom-up approach, inversing relationship of professional power and institutional control in health activism (Vicari & Cappai, 2016). The significant role of digital media and the Internet in particular in the lives of patients has been studied extensively, not only by social scientists (Lasker et al., 2005; Dilger et al., 2013) but also in the medical field. For example, the study of the Internet-based chronic disease self-­m anagement (Lorig et al., 2006) or evaluation of web-based educational and emotional resources for specific conditions (Zrebiec & Jacobson, 2001). The complexity of the subject imposes a multidisciplinary perspective (Murero & Rice, 2013) and yet in LCHAD we see how health identities based on medical diagnosis and biosocial implications still dominate even in the digital realm. The purpose of this chapter is to present a case study of the Facebook group ‘LCHAD ­Poland’. The chapter is based on data collected during two years of anthropological ­fieldwork conducted within the framework of the project ‘Socio-cultural dimensions of rare ­d iseases on the example of LCHAD deficiency: a comparative study of Poland and Finland’.8 During my research I conducted nineteen in-depth interviews with LCHAD patients or their p­ arents. I also analysed media and internet discourses as well as participating in events related to rare diseases. I argue that the support offered by this group and its users is an invaluable one, which cannot be provided by the welfare and medical system, and plays a very important role in the lives of people with LCHAD9 and their families. It is a network for parents and patients and a source of knowledge about daily struggles with the condition, such as managing diet or legitimising their child’s disability before welfare system representatives. I begin with a short description of LCHAD deficiency and then will introduce the ‘LCHAD Poland’ Facebook group. After this introduction, I then illustrate the most common issues for families with a child with LCHAD and what kind of support might be offered by other parents. My hope is that by showing the role of one of the support groups, I would have contributed to broader research on activism of internet support groups. I argue that sharing knowledge between parents contributes to medical research, as well as gives parents needed confidence in their encounters with doctors and social workers, thus enabling them to be advocates for their children’s best interests.

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Understanding signs and symptoms of a serious genetic condition The body of a patient who has LCHAD cannot produce enzymes, which are key in the process of fatty acids oxidation and this is first seen in early infancy or childhood (Sykut-­Cegielska, 2006). This process plays a very important role in supplying energy to the body’s organs. The body draws energy from glucose, but when this supply runs out, the mitochondrial fatty acid β-oxidation process starts (Sykut-Cegielska, 2006). When carbohydrate stores are depleted during prolonged fasting or periods of metabolic stress, mitochondrial fatty acid oxidation becomes essential (Tyni & Pihko, 1999). Issues with mitochondrial β-oxidation can mean heart problems, people falling into a coma or damage to the retina (Sykut-­Cegielska, 2006) but normally, the signs of a LCHAD episode are a lack of energy, problems with eating, weak muscles and liver damage. The signs and symptoms of LCHAD typically appear when the patient is a baby or in infancy and if not treated they can lead to disability or death. When symptoms appear or the process of β-oxidation of fatty acids is interrupted, this means that the ‘metabolic crisis’ (as called by Polish doctors and interviewed patients’ parents) of the disease occurs and this happens when the body is ‘fasting’ or the calorie intake is lower than the body’s needs. It does not necessarily mean that an infant is hungry as the early stages of any infection, vaccination or even physical activity can lead to depletion of calories needed. Yet, episodes of the disease can be fatal and, in the past, when the disease was not well researched, it led to sudden deaths in infancy (Sykut-Cegielska, 2006). Until recently, the mortality rate was 36% among Polish patients (Sykut-Cegielska, 2006, p. 56) and it was estimated that approximately 40% of children with LCHAD would die in the early days after birth or early years (Autti-Rämö et al., 2005, p. 1130). There are no known cures or medications for LCHAD, however, with proper treatment, patients can improve and survive well into adulthood. Treatment usually involves a strict diet, that should be followed for the rest of a person’s life and it is the only known way to keep relatively healthy. Two main dietary recommendations are: (i) patients must avoid ‘fasting’ and meals should be high-calorie, with lots of slow digestible carbohydrates (rice, barley or even corn starch) and (ii) the diet should be long-chain-fats free, because the body cannot produce energy from this source. In the case of a rapid metabolic decompensation, a child is often taken to hospital,10 where doctors administer an intravenous glucose infusion, in hope of improving a child’s condition (Haas & Burgard, 2016). This is the only known way of helping LCHAD patients when an episode or crisis occurs and there is no cure. What is important is that LCHAD is not a visible condition. Even if a child requires a central intravenous therapy (IV), percutaneous endoscopic gastrostomy (PEG) or a feeding tube, it is not that apparent and can be easily hidden under clothes. Sometimes patients have limited mobility (due to nerve and muscle damage from previous episodes) but for a stranger there are no outward signs of a serious genetic condition or disability that needs managing. As stated above, LCHAD is primarily diagnosed in childhood and it is mainly parents who are initially responsible for the management of this condition and one place they go for support and resources on dealing with signs and symptoms is a Facebook group. The ‘LCHAD Poland’ Facebook group consists of 8311 members (last year 25 users joined the closed group) and it was created in 2014 by one of the adolescent patients. The majority of users are patients’ parents due to the relatively young age of LCHAD patients. There is also a dietitian and a paediatrician, both of them off-duty when on the group. Topics of the entries (published on a daily basis) include: recipes and new products; legal problems with the welfare system; and questions about other parents’ experiences (e.g. child’s condition after vaccination, how they deal with infections, schedules of night feeding and so on). The 291

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matters discussed between parents illustrate areas where families struggle to find support and Facebook fills a gap when the state institutions or medical system do not deliver answers. The simplest explanation of why this group is so important for affected families is because it is a small group of patients spread all over the country, having no chance to meet and discuss their problems and experiences otherwise. Although, as I stated before, LCHAD’s ­prevalence is higher in Poland (especially in the Pomerania district) than the global average, it is still a small group of patients. For the families of children with rare conditions and the people with condition themselves, the Internet becomes the only available platform to establish contact with each other as it is hard to meet in person. Not only because the condition is rare and chronic but also because patients are spread all over the globe. I will e­ xamine three areas of family life affected by the condition: (i) management of diet; (ii) dealing with stress and (iii) interactions with the welfare system.

Diet and lifestyle management One of the most often discussed subjects in the group is self-management of the condition through diet. It is also probably the most important element of life with the condition as it reorganises family life. The restrictiveness of a diet impacts not only a child’s peer relations, but also those within the family. Constant vigilance over meal times is stressful for the ­parents, but it can become a way of life. As I learned during my visits into homes, despite ­limited ingredients, parents tried their best to create meals not only attractive for their ­children, but also similar to those eaten by other family members. The majority of Facebook group content thus consists of recipes of colourful, appetising and family friendly meals. Since the only known treatment that can improve quality of life of a person with LCHAD is a rigorous diet, a dietician’s support becomes essential. Although cooperation between the dietician and parents is crucial, not all of the patients can expect the same treatment as different hospitals have different regulations and procedures. Depending on the hospital, patients are expected to come for check-ups which can range from once a year to every three months, and not all hospitals can provide LCHAD patients with a dietician’s guidance. Even if patients’ parents have a chance to speak with a specialist, it is, in their own words, neither sufficient nor frequent enough. During infrequent hospital visits there are more important things to discuss than the new fat-free products on the market or recipes for a birthday cake. Contacting other parents via Facebook allows almost immediate responses to questions ­regarding recipes or inspirations for children’s meals. The Facebook group allows parents to ask for and share information and one of the users is a dietician (who c­ onsults LCHAD ­patients in a hospital environment), and she responds to the parents’ concerns (­generally about product safety) right away, so they do not need to wait for the next hospital appointment. Although the issues (regarding diet) discussed in the group might be seen as too ‘­t rivial’ to be explained during the parent–dietician meeting, they are essential in the dayto-day management of the disease. They also ensure family life and inclusion of a child in meal times and celebrations but vigilance over embodiment of LCHAD does not end with meals and is also linked to stress.

Dealing with the embodiment of stress The second medically related matter raised in the group is how to handle a child whose body is under stress, for example, after vaccinations or during an infection, when a child complains that their legs hurt (which might be an indication of a metabolic crisis in its early stage) or 292

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when the child is not eating a prescribed amount of food (which is a struggle for the parents of babies, especially with keeping a night feeding schedule). Most commonly there are no specialists familiar with the disease near their home, so there is no way to ask a doctor from the assigned hospital questions on a regular basis. As I stated before, the immediate reaction is crucial because an initial ‘episode’ can progress rapidly and lead to disability and death. Parents can count on their hospital paediatricians in case of life-threatening symptoms as they may be transferred from their local hospital to a bigger, better-equipped one, or they can contact their attending physician to instruct the staff in the hospital they are in, but in the case of a common cold the situation becomes quite complicated. Similar to problems with diet, it seems that those situations are too ‘trivial’ or too sudden to be discussed during rare checkups at the hospital. In those situations, they can count on other parents’ insights and experiences, such as when to take a child to a hospital or how to handle a night feed for a baby. They do not necessarily need to contact their paediatrician in charge of their child’s condition. In this way, parents in the Facebook group ‘LCHAD Poland’ are building up a considerable knowledge on embodiment of signs, symptoms and management of LCHAD which is important not only for their children, but also doctors. The parents’ expertise in case of rare diseases is crucial as they give professionals much needed insights, as was stated numerous times at medical conferences12 and the flow of information between parents, patients and doctors spreads the knowledge and contributes to a better understanding of LCHAD. By sharing their experiences, parents contribute to priorities of medical research and creation of management strategies (such as calorie requirement and handling infections or vaccinations). Although parents’ knowledge is shared by word of mouth and is bottom-up, rather than a formal citizen science movement (Vicari & Cappai, 2016), the validity of their observations should not be refused based only on small scale and rarity of disease. As well as building up this expertise that the medical community was interested in, they were also becoming proficient in dealing with the Polish welfare system.

Interactions with the welfare system: not disabled enough? A subject that often appears in parental conversations is their problems with the Polish ­welfare system and their interactions with it. According to Polish law, the parents of a sick or disabled child are entitled to an allowance. There are two types of monthly financial ­support and this is higher for parents who have resigned from work to take care of their child (1,406 zł13 or 335 euro14) and lower for families with a disabled child (153 zł15 or 36 euro). The exact amount of the allowance is determined by a medical commission and in order to receive a higher benefit, the committee must recognise that the child requires constant care and is not capable of self-care. The decision about entitlement to the allowance is issued on a temporary basis, until a child reaches 16 years. Yet, the parents’ encounters with the committees are problematic, because of the ‘hidden’ and ‘episodic’ nature of LCHAD. As pointed out by Burke Valeras (2010), people and in this case, parents, must contend with different challenges, including learning strategic self-disclosure and impression management, for example, when to disclose and make disability visible and when to ‘pass’ and give society the impression of ‘nondisabledness’. Since LCHAD is a ‘hidden’ disease, the affected children may be seen, or can pose, as both disabled and healthy, depending on the environment, for example, among peers or in the hospital, and their current state of health. This creates a problem for the committee, which may but often does not know about LCHAD. They are presented with a healthy-looking child, which may be misleading, since 293

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the child’s difficulties are severe, but cannot be seen with a naked eye. The ‘episodic’ nature of the LCHAD creates a similar problem as for Canadian patients with episodic disabilities, who encounter this issue too and have many of the same experiences (Lightman et al., 2009). They are not recognised as disabled because of the questionable legitimacy of their shifting medical conditions. Since there are no official categories for persons with episodic disabilities because they are neither entirely well nor entirely sick, they are judged as ‘not disabled enough’. As LCHAD ‘episodes’ appear sporadically, children are often seen as not requiring constant care and the seriousness of their condition can be called in question especially if they are well cared for by their parents. Although the disease is the same, local medical committees’ decisions are different as they primarily rely on self-assessment of the health of the child and if a child ‘looks’ healthy. For some parents this seems to be unfair, since their child’s condition or frequent hospitalisations prevent one parent from working and has an effect on family life. As was said by one of the parents: The way it is with medical committees, they know better. Sometimes you hear about the child’s illness – that it is not that big of a deal, the child ‘looks’ healthy. I wring my hands, but usually the documentation and conversation are enough to convince. Refer to other cases of children with our disease – each of them has an allowance.16 Those parents who appealed the, in their words ‘unfair’, committees’ decision in court and succeeded shared their experiences and know-how with other parents on Facebook. Not only do they describe how they have succeeded and what documents they have submitted, they also share medical records of their children, which could be used in court to support other claims of parents in need. This kind of help unfortunately cannot be expected from welfare system institutions, since committees operate independently and issue their own verdicts. Only other parents can share their insights, experiences and ways of achieving the desired goal of higher benefits enabling better care of their children.

Conclusion Having a child suffering from a rare genetic condition has an impact on the whole family, but mothers and fathers, in particular, as parents. In this chapter, an internet support group appears as a helpful tool in advocacy and knowledge on understanding how to best care for a child. It helps parents in ways that cannot be expected from Polish state institutions and while, it does not necessarily mean that those institutions, welfare and public medical systems, act inadequately, a Facebook group offers more. There are simply not enough resources to meet the needs of patients, often very young, with a rare genetic condition and their parents who often begin advocating on their behalf. Using the Internet for global research and ensuring local support for affected parents is the only easily accessible platform for establishing those relationships and activism. The information shared on the Facebook group corresponds to what is most important to parents of children with LCHAD such as managing diet, coping with daily struggles and legal battles with the social welfare system. The issues raised there, while they form the core of families’ experiences, are difficult to resolve in an institutional way but have to be tacked individually by parents. The rarity of genetic conditions such as LCHAD make it difficult for parents to become a significant political force and as such small group they do not have the possibility to influence state legislature. Most of the families with a LCHAD child received help from the bigger foundation for children with rare metabolic disorders, but their involvement was limited to 294

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participation in meetings with their children. Sharing LCHAD knowledge allows parents to gain agency in their encounters with state institutions and ensures confidence building in themselves and their children. Exchange of information makes them capable of being advocates for their children’s best interests. That is why I see the semi-formal group of LCHAD patients and their families as a form of activism. As they said in our conversations, they do not necessarily feel a need to be a part of bigger organisation. Nevertheless, the knowledge acquired through the Facebook group makes them more empowered, so that they know what they can require from doctors and welfare service workers, and in their own opinion it’s a fight against inequality. There are, however, some movements in the realm of disability activism in Poland, for example at the time of writing this chapter (April 2018), a group of parents of adults with disabilities conducted an occupation strike in the Polish parliament. This protest, inspired by the Parents of Persons with Disabilities (Rodzice Osób Niepełnosprawnych) Association, is their second one (for the first time they protested in 2014). This time, their main goal was to change legislature to correlate the pension for their disabled children with those provided for the unemployed and to add a rehabilitation allowance. If they succeed, it will demonstrate that even a small group of disabled persons’ parents is able to influence policymaking.

Notes 1 LCHAD is the most commonly used name for the disease. Other names are LCHAD, LCHAD deficiency or long chain 3-hydroxyacyl-CoA dehydrogenase deficiency. 2 Entry published by a parent in the ‘LCHAD Poland’ Facebook group on 7 March 2017 (translation by the author). 3 Rare diseases site on the official Polish Ministry of Health website. Retrieved from http://www. archiwum.mz.gov.pl/leczenie/choroby-rzadkie/ on 10 August 2018. 4 Rare diseases site on the official Polish Ministry of Health website. Retrieved from http://www. archiwum.mz.gov.pl/leczenie/choroby-rzadkie/ on 10 August 2018. 5 Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency on Orpha.net website. Retrieved from https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=5 on 12 August 2018. 6 Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency on Orpha.net website. Retrieved from https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=5 on 12 August 2018. 7 Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency on Orpha.net website. Retrieved from https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=5 on 12 August 2018. 8 The project was financed by the Polish National Science Centre (2015/17/B/HS3/00107). 9 The importance of the Internet and social media in lives of disabled people in the light of unethical Facebook’s data harvesting and #DeleteFacebook action was discussed by Ryan (2018). 10 Some parents found ways other than taking their child to hospital. For example, glucose infusion can be administered by a befriended nurse or by hospice workers at a patient’s home. Those parents were avoiding taking their children to hospital, since the likelihood of infection increases, and a visit at the hospital can easily turn into a long stay. 11 The number of users on 11 December 2017. 12 For example at the 14th (2016) and 15th (2017) International Conferences on Rare Diseases, ­organised by Polish Association of Patients with MPS and Rare Diseases. 13 Ministry of Family, Labour and Social Policy. Disability benefits. Retrieved from https://www. mpips.gov.pl/wsparcie-dla-rodzin-z-dziecmi/swiadczenia-rodzinne/rodzaje-i-wysokosc-­ swiadczen-rodzinnych-kryteria-uzyskania-/test-swiadczenia-pielegnacyjne/swiadczenie-­ pielegnacyjne/ on 4 February 2017. 14 According to the exchange rate as of December 2017. 15 Disability allowance in 2017. Retrieved from http://kadry.infor.pl/kadry/ubezpieczenia/ zasilki_i_inne_swiadczenia/751015,Zasilek-pielegnacyjny-w-2017-r.html 13 August 2018. 16 Entry published by one of the parents in the ‘LCHAD Poland’ Facebook group on 2 November 2017 (translation by the author).

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References Autti-Rämö, I., Måkelå, M., Sintonen, H., Koskinen, H., Laajalahti, L., Halila, R., … & Renlund, M. (2005). Expanding screening for rare metabolic disease in the newborn: an analysis of costs, effect and ethical consequences for decision-making in Finland. Acta paediatrica 94(8), 1126–1136. Burke Valeras, A. (2010). “We don’t have a box”: understanding hidden disability identity utilizing narrative research methodology. Disability Studies Quarterly 30(3/4), 1–22. Dilger, H., Leissner, L., Bosanska, L., Lampe, C., & Plöckinger, U. (2013). Illness perception and clinical treatment experiences in patients with M. Maroteaux-Lamy (mucopolysaccharidosis type VI) and a Turkish migration background in Germany. PloS One 8(6), 1–11. European Commission. (2015). Cross-border newborn screening saves lives of babies in Pomerania r­egion. ­Retrieved from http://ec.europa.eu/regional_policy/en/projects/germany/cross-border-­newbornscreening-saves-lives-of-babies-in-pomerania-region on 24 July 2018. Haas, C., & Burgard, P. (2016). Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency: ­Introductory information. Tools Enabling Metabolic Parents Learning & Nutricia. Retrieved from https://www.nutricialearningcenter.com/globalassets/pdfs/metabolics/temple_lchad_english.pdf on 14 August 2018. The Institute of Mother and Child, Department of Screening. List of diseases and defects detected in ­screening. Retrieved from http://przesiew.imid.med.pl/choroby.html on 13th of August 2018. Lasker, J. N., Sogolow, E. D., & Sharim, R. R. (2005). The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailinglist. Journal of Medical Internet Research, 7(1), 1–11. Leiter, V. (2004). parental activism, professional dominance, and early childhood disability. Disability Studies Quarterly 24(2), 1–16. Lightman, E., Vick, A., Herd, D., & Mitchell, A. (2009). ‘Not disabled enough’: episodic disabilities and the Ontario disability support program. Disability Studies Quarterly, 20(3), 287–293. Lorig, K., Ritter, P., Laurent, D., & Plant, K. (2006). Internet-based chronic disease self-management: a randomized trial. Medical Care 44(11), 964–971. Ministry of Health. (2017). Program badań przesiewowych noworodków w Polsce na lata 2015–2018 (­Newborn screening program in Poland 2015–2018). Retrieved from http://www.mz.gov.pl/wp-content/­ uploads/2013/12/podpisany-27.02.2017-r.-program-badan-przesiewowych-noworodkow.pdf on 12 August 2018. Murero, M., & Rice, R. E. (2013). The Internet and Health Care: Theory, Research, and Practice. Hoboken, NJ: Taylor & Francis. Novas, C. (2009). Orphan drugs, patient activism and contemporary healthcare. Quaderni. ­Communication, Technologies, Pouvoir 68, 13–23. Rabinow, P. (2005). Artificiality and enlightenment: from sociobiology to biosociality. In J. X. Inda (ed), Anthropologies of Modernity: Foucault, Governmentality and Life Politics (pp. 179–193). London, UK: John Wiley & Sons. Rodwell C., & Aymé, S. (eds). (2014). Report on the State of the Art of Rare Disease Activities in Europe. Brussels: European Union Committee of Experts on Rare Diseases (EUCERD). Ryan, F. (2018). The missing link: why disabled people can’t afford to #DeleteFacebook. The ­G uardian, 4th April 2018. Retrieved from https://www.theguardian.com/media/2018/apr/04/missing-linkwhy-disabled-people-cant-afford-delete-facebook-social-media on 24th of July 2018. Sykut-Cegielska, J. (2006). Mitochondrialne zaburzenia utleniania kwasów tłuszczowych. Badania ­biochemiczne i molekularne u polskich pacjentów. Warsaw: Biuro Gamma. Tyni, T., & Pihko, H. (1999). Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency. Acta ­Paediatrica 88(3), 237–245. Vicari, S., & Cappai, F. (2016). Health activism and the logic of connective action: a case study of rare disease patient organisations. Information, Communication & Society 19(11), 1653–1671. Zrebiec, J. F., & Jacobson, A. M. (2001). What attracts patients with diabetes to an internet support group?: a 21-month longitudinal website study. Diabetic Medicine 18(2), 154–158.

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PART VII

Campus activism in higher education

22 BEYOND RANDOM ACTS OF DIVERSITY Ableism, academia and institutional sites of resistance Stephanie J. Cork, Beth Douthirt-Cohen, Kelly M. Hoffman, Paul T. Jaeger and Amanda Strausser Introduction: welcome to crippled America The 2016 Presidential election in the United States of America (USA) was unnerving for many diverse and disadvantaged populations, including disabled people.1 The eventual winner, ­Donald Trump, repeatedly mocked disabled people, blamed disabled people for violence (Cork, Jaeger, Jette & Ebrahimoff, 2017), and published a campaign book titled Crippled ­America, an obvious slur against disabled people. The Presidential administration that followed translated this discriminatory attitude into policy, exemplified in the appointment of Education Secretary Betsy DeVos and Attorney General Jeff Sessions. Both DeVos and Sessions have histories of ignoring community need and instead privilege more affluent populations (Cherkis, 2016; Black, 2017; Brown, Strauss, & Douglas-Gabriel, 2017). Most recently, Sessions has moved to remove guidelines for the implementation of the Americans with Disabilities Act (ADA), undoing decades of advocacy, activism and policy protection for disabled people. In particular, there is growing concern about decreased access to healthcare, work and education (Diament, 2018). The current Presidential administration clearly takes aim at ‘varied inconvenient populations’ reinvigorating and openly condoning a history of white supremacy and violence (Block & Friedner, 2017). This fulfils the purpose of characterising only the chosen few, as truly American and worthy/deserving of citizenship. The administration’s clear support of violent incarceration, deportation, and detainment practices echoes histories of racist immigration policies, and the ableist foundations of eugenics (Puar, 2007; Snyder & Mitchell, 2010; Block & Friedner, 2017). This is acutely frightening for disabled populations, as: there is potential for suffering in the current practices of making inconvenient populations disappear, in incarcerating and ejecting on a grand scale, in determining who is and is not entitled to what kinds of health, education and social supports, and in the gutting of the already-thin social safety net. (Block & Friedner, 2017, p.70) The continuous legislative attack on healthcare and other supports for the disability community signals an imminent crisis. 299

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In such times, public institutions can take leadership in the fights for inclusion and the protection of rights of people with disabilities. While universities can become sites of resistance, many fall short in this regard. Instead of being refuges of egalitarianism against this backdrop of discrimination at the highest level, the ableist infrastructure of post-secondary education in the United States often precludes disability as a full part of the university community (Tichkosky, 2003). Akin to the failed promise of ‘special education’ ( Jaeger & Bowman, 2002; 2005), post-secondary opportunities in the United States – highlighted in university marketing materials as being more progressive, inclusive, and accessible – under the premise of a form of ‘egalitarian’ elitism, exclude or tokenise those with disabilities. Within the post-secondary context, basic compliance with disability legislation is seen as sufficient, with items such as ramps and parking passes viewed as the only necessary accommodations for disabled students, staff, and faculty. This effectively erases the climate of ableism and limits the accessibility of university resources for diverse members of the disability community. While post-secondary diversity projects imply accessible and engaging environments through ‘inclusive excellence,’ the lived experiences of the campus community reveal the reality of navigating exclusion based on disability (Taub, McLorg, & Fanflik, 2004; Davis, 2011; Miles, Nishida, & Forber-Pratt, 2017). This disconnect is tied to the exclusive architecture of the university itself. Many outside the disability community may not intend to do harm to their colleagues and students, but more often than not, the intention is irrelevant due to the material impact – ableism is built into the system.2 This institutional ableism has very real effects on disabled students, staff and faculty. Studies show that individuals with disabilities have lower graduation rates from post-­secondary institutions than their nondisabled peers (Stoddard, 2014), are at greater risk for poor academic performance (Reed, Kennett, & Emond, 2015), and continue to experience other barriers to learning (Tincani, 2004; Belch, 2004; Hong & Himmel, 2009; Hong, 2015; Black, Weinberg, & Brodwin, 2015). These disparities can be tied to a number of policy and related socio-historical issues that confront students with disabilities at the post-­secondary level (Rao, 2004; Taub et al., 2004; Vance, 2007; Hong & Himmel, 2009; Davis, 2011; Kudlick, 2011). In Navigating College, a free resource written by Autistic adults and published by the Autism Self-Advocacy Network (ASAN), the authors acknowledge the fact that legal support does not eliminate all barriers: ‘we are not yet living in a post-ADA country. There are still many barriers that a student needs to overcome’ (ASAN, 2013, p. 36). The text offers advice to students transitioning into college, suggesting ways to navigate barriers and tips for self-advocacy. While many recommendations for students take the form of utilising onsite disability support services, there are also clear limits to these formal provisions. Even well-seasoned advocates must contend with problematic assumptions about space and access. Taub, McLorg and Fanflik’s (2004) study of stigma management strategies uncovered many of these painful ironies faced by even the most vocal self-advocates. While student advocacy is encouraging and necessary for larger cultural change, the inequity written into the structure of the university itself continues to reinforce ableism. Due to structural and systemic exclusion, disabled people within the university often strategically coalesce around specific disabilities instead of building a larger community unified by shared ableist experiences, barriers and inclusion goals, which can dilute potential political power. But, this also creates opportunities for community-wide collaboration, and fortunately, we have a few successful examples to learn from; both in the past (Davis, 2013; Hirshmann & Linker, 2015) and within the contemporary context (Mann, 2018).

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This chapter explores key events in which disabled people have strategically behaved as a community to achieve results and reforms that would not otherwise have been possible. This reflection is followed by a discussion of contemporary initiatives that showcase the current potential for a broader disability community of members, family and accomplices. Finally, we argue that we need more than a community of disabled people in the academy; we need an activist and justice-focused community of disabled people.

When disabled people were (briefly) a community The landscape of disability advocacy in the contemporary moment boasts an array of groups focused on specific kinds of impairments with specific agendas, based on these identities (Davis, 2013). These groups are strong voices for diagnosis-specific and/or identity-­specific issues within smaller populations. However, this can create barriers between different groups when they are forced to compete for scarce resources. What occurs can be a series of disjointed and sometimes competing community needs. While this is necessary to achieve small-scale changes, and to include those often left out of mainstream movements (O’Toole, 2015; Miles, Nishida & Forber-Pratt, 2017), these efforts can result in hostility between various groups and less powerful messaging. When messages are disjointed and conflicted, disabled people are easier to ignore and erase outright. A manifestation of ableism is to keep people with disabilities either isolated from one another in separate and often unequal educational settings, for example, or to encourage those of us with disabilities to reduce the stigma of ableism by not gathering and socialising with other people with disabilities. To have political and social clout, unified messages from a united disability community are a necessity. Historically, a unified community has been successful in sending a clear, loud message that resulted in major policy and cultural changes in the United States. Working together made civil rights for disabled people a reality (Heumann, 1979; Shapiro, 1994), and working together is the best approach to defining and defending those civil rights. In the USA, civil rights for disabled people are primarily based on three laws and their more recent amendments: the Rehabilitation Act (1973), the 1990 Americans with Disabilities Act (ADA) and what is most commonly known as the Individuals with Disabilities Education Act (IDEA), formerly the Education for all Handicapped Children Act (EHA), first written in 1975. The processes of getting the Rehabilitation Act enforced and, a decade later, getting the ADA passed into law represent two of the clearest social and political victories disabled people have ever had in the USA, and both came when people across types of disability worked collectively towards a shared goal.

Section 504 Before the conception of the ADA, people with disabilities were protected under Section 504 of the Rehabilitation Act, originally passed in 1973, representing a ‘transformation’ of the standing of disabled people in the United States by established ‘full social participation as a civil right’ (Scotch, 2001, p. 3). This piece of legislation was purposefully constructed with the same language as the Civil Rights Act of 1964, which guaranteed freedom from government discrimination based on race, colour, or national origin. By evoking this strong language, the disability community advocated for the full inclusion of disabled people in all major public spheres including employment, public services, healthcare, transportation, and education.

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Section 504 was the first time disabled people were viewed under the law as full citizens in the USA. However, without regulations or guidelines for enforcement, the law was an empty statement, and even a successful lawsuit in federal courts did not sway the Nixon, Ford, or Carter administrations to implement these rights fully (Bowe, 1978; ­Jaeger­  & ­Bowman, 2002; Longmore, 2003; Fleischer & Zames, 2011). In fact, the response of the Carter administration was to threaten to issue guidelines that would strip the law of all its power (Shapiro, 1993). Yet, through these barriers, the disability community rallied together and organised to fight for greater representation as equal members of American society under federal law. Little more than a decade later, the ADA was being considered by Congress. As with the Rehabilitation Act public protests, the key to getting the ADA passed and signed into law, were the result of collaboration between different advocacy groups and between people with different kinds of disabilities.

The Americans with Disabilities Act The period between the Rehabilitation Act protests and the implementation of the ADA found many disabled people strongly identifying with other disabled people as a community. Among respondents to a study by the International Center for the Disabled (ICD) (1986),3 74% of disabled Americans said they ‘shared a common identity’ with other disabled people and 45% believed that they were ‘a minority group in the same sense as are blacks and Hispanics’ (ICD, 1986). The ADA was designed to extend the rights of people with disabilities into more settings, such as employment, shopping, travel, state and local government services and higher education. While Section 504 helps lay the necessary groundwork, it was the ADA that truly institutionalised disability inclusion as a civil right versus charitable process (Scotch, 2001; Fleischer & Zames, 2011). Activists organised through groups such as ADAPT (Americans Disabled Attendant Programs Today), Justice for All, Act-Up, Disabled in Action and WARPATH (World Association to Remove Prejudice Against the Handicapped) staging sit-ins throughout the country. Perhaps most memorable to many in the United States was the ‘Capitol Crawl’ in 1990; where advocacy groups left their assistive devices at the base of the capitol steps and made their way up the inaccessible staircase, using spectacle to incite and foster support for the necessary policy changes (Fleisher & Zames, 2011). The main message and rallying cry of these protests was ‘Nothing about us, without us.’ This slogan pushed back against the many manifestations of prejudice towards disabled people, reflecting the desire for self-determinism, to escape the ongoing paternalism that leads able-bodied people to profit literally and metaphorically from disability. In this moment, regardless of diagnosis, activists within the disability community fought together to be treated equally, and to have a political voice ensuring that disabled people were central to decisions about disability policy. After the struggles to gain rights through the Rehabilitation Act and the ADA, most advocacy became less coordinated and focused on more limited messages (Hirshman & Linker, 2015). The larger sense of community began to fade away without any perceived mutual threats faced by all disabled people. Even though the number of disability-focused protests increased after the passage of the ADA, the success of the protests in terms of public, political, and media attention dwindled and the impacts of the protests became fairly limited (­Barnartt & Scotch, 2001). The dilution of the messages and the declining coordination between people with different disabilities and the different advocacy disability group resulted in a clear diminution of the political voice and impact of disabled people. Groch (2001) explores how understanding oneself as part of a group is necessary for collective action, reviewing 302

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the experiences of deaf, blind and mobility-impaired activists. Cultivating shared identity towards social justice requires shared spaces to create shared meaning and identity. However, not all disability community members have the same experiences. This introduces a tension familiar in many movements, that, for example the ‘pan-disability’ movement, will undermine the specific needs of a particular group, ‘We feel that we are such a tiny minority, if we involve ourselves in a coalition, that the issues of the coalition will supersede and subvert our issues’ (National Foundation for the Blind member, from Groch, 2001, p. 77). While these are ongoing issues within any coalition, it is this foundation that helps us understand the potential and pitfalls of a unified space to build disability community. Similarly, the focus on addressing and interrupting ableism as a systemic oppression is a shared rallying focus. It is this potential, demonstrated by the lessons of the Rehabilitation Act and ADA, which drives the building of a disability community on the University of Maryland, College Park campus. Many experiences of the students, staff, and faculty with disabilities are characterised by frustration, isolation, and stigma. Fostering spaces to identify, to combat, and to come together was a unique and necessary effort inspired by the history of disability rights as civil rights. Two programs in particular highlight how the disability community can be supported from an institutional perspective. The first was the Moving Maryland Forward (MMF) grant programme (2012–2016), aimed to follow the University’s Strategic Plan for Diversity, Transforming Maryland: Expectations for Excellence in Diversity and Inclusion (2010), which was hosted by the Office of Diversity and Inclusion (ODI) and led by Dr Kumea Shorter-Gooden, UMD’s first Chief Diversity Officer. Each proposal could receive up to $15,000 to help the university community meet their diversity goals. In particular, this gave advocates a space to foster programming and outreach for specific population needs and therefore included projects such as the Dis/Ability Studies Minor, the TerpAccess Disability Network, Employ/ Ability, and Disability Goes Global at UMD. The second is the UMD Disability Summit which is an annual scholarly and activist gathering to combat ableism and build community. The Summit inspired students to organise and create a student group: ‘Terps for Disability Justice,’ that invites all students (graduate and undergraduate), to come together regardless of type of disability, and towards a united disability community for change.

Working towards community, and signs that we sometimes are As of this writing, the most recent numbers from the Census Bureau suggest that 56.7 m ­ illion Americans have a disability – 19% of the population, the largest minority group in the United States (US Census, 2016). In part, due to an aging population as well as better care and medical innovations such as early diagnosis, the number of individuals with some type of disability is anticipated to grow, increasing the size of this group (Brault, 2012). As a series of fragmented smaller groups, the potential for political impact, as well as connection and community, fades away. Fostering a united sense of a disability community is a vital step toward articulating a rights-based approach. Becoming a larger disability community does not require abandoning the intersections of identities and cultures or ignoring intersectional forms of oppression (Crenshaw, 1991; Dill & Zambrana, 2009); it means thinking about and identifying the self in an enhanced manner. Being part of a disability community means being a person with a specific type of disability amidst other vectors of identity and experience. Disabled individuals far too often have an identity imposed upon them based on a medical model that is framed entirely in terms of a specific diagnosis, inhibiting and undermining identification with a larger social identity of disabled people as a community. A unified disability community centralises being disabled as a cultural group, a site of pride, identity 303

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formation and resistance. This does not mean leaving diagnoses or other intersections of experience behind, but rather brining it all together to share tactics and resources to create and sustain necessary societal change. At the University of Maryland, organising and advocacy efforts developed into a number of projects that fought back against simplistic understandings of disability as only medical impairment. With stakeholders across different departments, colleges, programs and practices, the disability community was supported through both academic and extracurricular activities. Academically the Disability Studies Minor and the UMD Disability Summit support disabled scholars, researchers and disability focused research. Extracurricular offerings include programming such as Disability Awareness Month, the TerpAccess Disability Network, Employ/Ability and the Education Abroad program: Disability Goes Global. Finally, the student group Terps for Disability Justice fosters opportunities for training, advocacy and activism within and beyond the campus community. Terps for Disability Justice facilitates spaces/meetings and events such as the Disability Day of Mourning, open to both campus and community members. This is an event supported by a number of disability advocacy organisations, including Autism Self Advocacy Network (ASAN) ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, the American Association of People with Disabilities and The Arc (among others) hosted each year in March that remembers disabled victims of filicide. ASAN provides a list of names that can be read out to commemorate these losses. In particular, the organisations who call for action bring attention to the cyclical nature of this violence that is seemingly condoned by society, ‘We see the same pattern repeating over and over again. A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden” of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten. And then the cycle repeats.’4 The success and growth of these initiatives demonstrate the hunger among many disabled people, their families, allies and accomplices to be part of a larger community and to work together. The foundations of this community were first realised under the Moving Maryland Forward (MMF) grant programme. Each of the successful projects under MMF led to the community and institutional support of the UMD Disability Summit. While the MMF projects themselves had isolated institutional homes, they helped cultivate interest in an array of spaces across campus.

Disability community at Maryland Building community through ‘inclusive excellence’ is the intention of the University of Maryland as expressed in the 2010 Diversity Strategic Plan; this is conveyed through scattered outlets, events, and advocates across the campus. The majority of sites for disability are based in compliance, via the Accessibility and Disability Services (ADS) office. The ADS office focuses heavily on undergraduate accommodation and plays a small role in greater community advocacy. The impressive lineage of the President’s Commission on Disability Issues (PCDI), created in 1986, should have helped fill this void, but, like many diversity efforts, is volunteer led and run and therefore continues to suffer from a lack of institutional power and few resources (Campisi, 2016). While the members of the commission are often dedicated advocates, the commission itself has little institutional clout. This is similar to 304

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other campus diversity workers, many of whom are merely assigned to a position and are often under-resourced. While such work is vital to the support of the campus community, it is often difficult for these groups to access the necessary power to make actionable change. PCDI is not alone in this struggle; there are three other President’s Commissions dedicated to Women’s, Race and Ethnic Minorities and LGBTQ+ issues. However, these causes have parallel academic and/or service units to support their activities, while ADS remains the only formal institutional site focused on disability and its main purpose, though essential, is focused on legal accommodations for students. There are many who have seen this gap and fought to change the status quo. This includes advocacy work from the Office of Diversity and Inclusion (ODI), which provides a node of support for under-resourced initiatives. From 2014–2017, this office hosted events, ran courses, provided spaces for dialogues about disability, trainings around notions of radical access and interrupting ableism, gave accessibility tours of campus and coordinated speakers for the campus community. Students have also been vocal about some of the issues on campus, including wayfinding and signage, vying for more resources and support (Archie, 2017; Forston, 2017; Kean, 2017b). Yet, these efforts were not institutionalised and instead the result of specific efforts of individuals, not an institutional commitment to change. Therefore, the Moving Maryland Forward grant programme became an essential intervention, which sought to implement longstanding institutional growth and change.

Moving Maryland Forward The Moving Maryland Forward (MMF) grant programme hosted by ODI from 2012–2016 was the largest grant offered by this office and one of the largest diversity grant programs at the University. With a maximum of $15,000 and the potential of annual renewal and flexible requirements, this grant made room for trial and error as well as innovation and cultural change. As no previous infrastructure existed for the disability community at the university, beyond compliance offices, the MMF grant program can be seen as one of the main resources to build momentum for the scattered disability advocates to campaign. In the five academic years that this grant program ran, there was clear growth in projects focused on disability. These grants allowed for an interdisciplinary wave of academic, political, and social activity to occur. Primarily this was seen in the thrice funded, Disability Studies Minor, a proposal from the College of Education (2014, 2015, 2016). While the formal implementation of the Disability Studies Minor has not yet been realised, this grant fostered the creation and support of two major courses focused on the cultural study of disability (EDSP 220: Disability in Community: Access, Accommodation, Adaptation, and EDSP289i: Disability: From Stigma and Sideshow to Mainstream and Main Street), culminating a public forum entitled the ‘Rise Above’ symposium. The symposium gave the undergraduate students an opportunity to share their research and experiences surrounding special education. Each of these events also hosted a disabled keynote speaker, first disabled artist Dan Keplinger and then Maryland alumna Rosie Caranza. Further, the symposia helped foster the linkages between divergent projects across campus, as the graduate students organising the event invited all student groups related to disability to join. In this way, the Disability Studies Minor project was able to cultivate community beyond merely academic topics. Celebrating the work of students as well as showcasing the skills of leaders in the disability community helped to build towards the cultural change needed to alter the campus climate. 305

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At the 2015 Rise Above Symposium another MMF grant recipient, the ‘TerpAccess Disability Network’ was invited. While the TerpAccess training program began in the School of Public Health, this opportunity helped expand its audience. In future years the TerpAccess program worked directly with students in education and will likely become part of the Disability Studies Minor offerings. TerpAccess was an ambitious project on its own, offering both a public workshop and a semester-long course in disability awareness, advocacy and action. Students involved have also been involved in the UMD Disability Summit, Disability Awareness Month and other projects by the President’s Commission on Disability Issues, again showcasing the overlapping and supportive atmosphere embodied by the disability community at Maryland. Through the Career Center, a program catered to current students with disabilities entitled Employ/Ability was also created. Dr Nancy Forsythe continues to run events, connecting students with opportunities for paid employment outside of the university community. A final disability-themed grant was awarded to the Education Abroad office, conceptualised by Dr Moira Rogers. This grant gave able-bodied and disabled students an ­opportunity to travel to Peru, Ecuador and Ghana to work with disability-focused organisations. Organisations such as Mi Pequena Ayuda (Peru), Campaign for Learning Disabilities (Ghana) and Baca Ortiz (Ecuador) served as the students’ homes while they connected with the local language and culture around disability. Unlike traditional Education Abroad programming this project worked to recruit and accommodate students with disabilities. The financial support of the MMF grant allowed a videographer and qualitative researcher to travel to Peru and Ecuador to document the experiences of the students. In their data collection, they worked with the students to illustrate how their own identity as disabled contributed to their desire to engage more deeply with this the local disability-focused organisations. While each MMF project had a unique approach and institutional home, there were networks forged across the different units. Central to the success of these connections was the inclusion of students, staff and faculty from all across the campus community. In particular institutional advocates and members of disability justice community such as Dr Beth Douthirt-Cohen made the necessary introductions and facilitated the growth of networks between these spaces. Similarly, a burgeoning group of emerging intersectional critical disability scholars such as Dr Angel Love Miles offered critical feedback about how racism and white supremacy (and other forms of prejudice) were impacting disability scholarship and justice movements and the need for disability justice activism to practice solidarity and center how all systems of oppression are interconnected (Miles, Nishida, & ­Forber-Pratt, 2017). The growth of the disability community at the University of Maryland, therefore, relied on passionate individuals pushing beyond singular or seemingly ‘random’ events. These projects also made disability a part of the sociocultural, justice, and political conversations that were occurring in the campus community around race, sexuality, gender, socioeconomic status, among other dimensions of difference. Disability had not been conceptualised in meaningful ways as a site of community and identity, nor had ableism, as systemic oppression, been put in conversations about the intersecting forms of oppression. The engagement of disability conversations in places as widely diverse as Education Abroad, Public Health, Education, Information Sciences, Career Services and the Business School ‘mainstreamed’ the conversation and led to a sense of momentum, community, and possibility. It was the growth of these networks that then helped establish the UMD Disability Summit. 306

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The UMD Disability Summit Through the different MMF project the authors came together to develop the ‘UMD ­Disability Summit.’ The idea was simple: as most events related to disability focus on a ­specific type of disability or a profession related to disability, or a specific academic field, we wondered whether there was a desire for an event that embraced all elements of disability. We envisioned the UMD Disability Summit as a forum for the exchange of ideas and ­practices and a place to promote communication and collaboration between people with all types of disabilities and identities; family members; advocates and activists; researchers, educators, and students; manufacturers of adaptive technologies; employees of government agencies, non-profits, and community institutions; and anyone else committed to supporting disabled people and disability justice. The 2016 UMD Disability Summit was held in April, less than three months after it was announced. More than 100 people attended, representing all of the groups we hoped would want to be included, and the presentations encompassed all manner of academic and professional disciplines. Presenters came from all across the United States and shared research and advocacy addressing the complex intersectional lives of the disability community. The topics ranged from video games and the prison industrial complex to issues around health care provision and assistive devices: ‘Technology is changing the world as we experience it. What are the implications on accessibility/extended-usability?’, ‘For Your Own Good: Coercive Care in the Lives of Marginalized People,’ and ‘Criminalization of Black Bodies: How can a Black Queer Feminist lens disrupt narratives of an ableist movement?’ In this way, the 2016 Summit began to cultivate interdisciplinary conversations about how to best support the disability justice movement in a wide array of spaces. The feedback was supremely encouraging and convinced us to hold it again to assess whether the burgeoning sense of community was sustainable. In April 2017, the second UMD Disability Summit drew nearly triple the attendance of the first with more than 15 co-sponsors, including government agencies, non-profits, and educational institutions (Kean, 2017a). Attendees were not only from around the US, but from many other countries as well. The range of presentation perspectives, backgrounds and interests expanded in proportion with the growth in attendance. Many of the presentations accounted for the breadth of attendees, offering thinking across intersections, disabilities and disciplines. Sample presentations included: ‘Disabled & Proud: Moving from Pity and Fear to Solidarity and Justice,’ ‘Crowd-Sourcing the Disability Resistance,’ ‘Deaf and Disability Coalitions during Political Upheaval: Reconfiguring Access and Inclusion,’ ‘Using ICTs to Enhance the Effective Participation of Persons with Disabilities in Global Governance,’ ‘Gossip as a Site of Resistance’ and ‘There is No Pill for an Unkind Heart: The ‘Duty to ­Accommodate and Limitations of Policy.’ Once again, feedback from attendees was enthusiastic, highlighting how valuable and empowering it was to experience and talk about disability as a community rather than a set of separate communities. Attendees reported surprise and appreciation for ‘the great diversity of the Disability community’ represented in the speakers, presentations, and attendees. Others commented on the ‘big picture’ and ‘global perspective’ the event provided, relishing the opportunity to network and engage in discussion with the presenters and other attendees. ‘I appreciated that people were so open to approach others and start a conversation,’ one person told us. Another commented: ‘I have not seen this spirit of inclusion in a long time,’ and stated that they appreciated ‘The inclusive nature and the fact that it was being put on by future leaders and educators who are interested in making the world more inclusive of people with disabilities.’ This feedback helped us 307

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realise the potential of this space, as comments ranged from addressing disability issues, improving service and accessibility, to networking, diversity in the disability community and advocacy and allies. While the majority of feedback was supportive of the event, we were grateful to those who gave insight into how accessibility could be improved, including using certified Deaf interpreters and offering other food options for those with dietary restrictions. This commonly felt sense of an inclusive community of disabled people at the UMD Disability Summit and the notable positive strength of the attendees’ comments after the event elucidates a desire for forums that build community and foster opportunities for collaborative networks. While the UMD Disability Summit is admittedly only one event, and a recently established one at that, the overwhelmingly positive response and increases in attendance demonstrates that there is a need for building and nurturing heterogeneous disability communities. Events like the UMD Disability Summit, that foster solidarity through shared space, are essential to build and sustain a community that can engage social and political issues on behalf of all disabled people (Groch, 2001). This is especially important under the current American Presidential administration. Many individuals have both righteous fury and deep fear of what will happen next. Essential in maintaining a social justice orientation in these spaces is ensuring that this event is led by and gives expanded platforms to disabled people, not a forum just for able-bodied people to feature their work. The Summit and other initiatives must also feature purposeful attempts to be intersectional and engage intersectionality meaning how racism, sexism, classism, and ableism among other dimensions of oppression intersect to impact people’s lives (Crenshaw, 1991; Dill & Zambrana, 2009; Miles et al., 2017) and celebrate the heterogeneity among the community regarding disability and other dimensions of difference. However, to really strengthen the ability of disabled people to engage in the current political environment, the identification of an alliance with accomplices is also a necessary aspect of establishing a sustainable disability community.5

Accomplices among us The founding of the UMD Disability Summit was collaboration between both disabled and nondisabled advocates. This showcases another way to amplify disability advocacy and to support efforts to create new unifying forums for disabled people through coordinating with allies that have histories of supporting disabled people. There is a long history of able-bodied people taking a paternalistic or parasitic approach to disability advocacy, making genuine engagement problematic (Stone & Priestly, 1996). However, we believe there are opportunities for nondisabled individuals to lend resources and support to disability activism. Vital to the success of these partnerships is for those outside the disability community to ensure they do not take up space, but rather amplify the needs of the community. Critical disability studies demands a critical approach to building and strengthening the disability community, dictating that any movement towards activism is meaningless without disabled people at the centre. While nondisabled actors can support disability advocacy and activism, it is necessary that they play a supporting role, instead of leading any movement towards equity and justice. This aligns closely with other work by Critical Race Scholars and Indigenous Activists that have critiqued some forms of ‘allyship.’ Similarly, to the experiences of people with disabilities, the most marginalised are further silenced when space is taken up by able-bodied allies trying to ‘do good.’ Critiques of this approach are essential (Stone & Priestly, 1996; ‘Accomplices not allies,’ 2014; Miles et al., 2017), with activists and insiders requiring greater involvement and commitment from those who portend to be ‘part of the cause.’ 308

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One idea among these seems, in both rhetoric and practice, to align with the principles that were embodied in the MMF projects and the UMD Disability Summit, ‘Accomplices not allies’ (2014) as an accomplice does not offer salvation, does not exploit nor co-opt. Instead within a broken system, where the policies themselves are unjust, the accomplice is willing to breakdown and rebuild, magnifying those in the margins: openly decolonising and actively combating oppressive systems such as white supremacy (‘Accomplices not allies,’ 2014; Geoffrey & Misumi, 2016). This is not a new concept, but rather the reinvigorating of great work by other activist communities. In particular, articulations of disability justice focus on the need to bring the margins to the centre in terms of ‘Nothing about us without us is for us’ (Charleton, 1998). Instead of the focus on compliance within the post-secondary context, the work of the MMF grants, the UMD Disability Summit as well as the burgeoning disability community at the university focuses on self-determination and the allocation of financial and other resources directly to the community.

Building the disability community As disabled people think about ways to strengthen the coordination and impact of their voices and messages, identifying, engaging, and coordinating with organisations, institutions, and professions that have been actively supportive of disabled people can help increase a sense of community and the strength of social and political impact. The search for new partnerships for advocacy and engagement must also consider finding a range of accomplices who can work on issues impacting disabled people of all types and situations. The chances of achieving disability justice will be greatly improved by people with disabilities working together and working with accomplices, particularly organisations and professions that have already established themselves as accomplices. For example, libraries have often been sites for those to access necessary resources for little to no cost (Wentz, Jaeger, & Bertot, 2015). The range and the number of co-sponsors of the UMD Disability Summit indicate that there are many organisations that see themselves as accomplices, or wish to become accomplices but are lacking the knowledge, skills, and/or awareness to do so.

Every one of us: becoming a people of disability Disability reflects the ‘natural physical, social, and cultural variability’ of living things (Scotch & Schriner, 1997, p. 154) and has been present in every human culture through time (Scheer & Groce, 1988). There is no reason that certain physical, cognitive, sensory or other differences are deemed disabilities and others are not. How societies treat people based on those determinations about what is ‘normal’ and what is not. Services have been created to classify, represent, and perceive disabled people, creating a history and a lived experience that can create a feeling of common experiences and culture ( Jaeger & Bowman, 2005). These cultural bonds between disabled people include, but are by no means limited to: Having shared experiences of resistance to and coping with the discrimination and the social distancing that are the commonplace reactions to disability, and internalising the ableist beliefs, biases, and ideologies that are pervasive in society (Campbell, 2008). Possessing an identity, or the perception of having an identity, that is similarly shaped by the representations of and the reactions to disability; Wanting to achieve goals of access, inclusion, and acceptance in spite of the societal and social barriers created to limit disabled persons; and Learning to adapt to limitations and barriers to succeed, ‘What I learned was a way of thinking of creative ways around limitations’ (Andre, 2003). Living with a disability can 309

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be understood by people as an important part of their lives and, in some cases, the most salient aspects of their identity (Albrecht & Verbugge, 2000; Charmaz, 2000), alongside their other characteristics, abilities, and preferences. People with disabilities report sharing similar personality traits (Gill, 1995) or the internalised ableism (Campbell, 2008) that results from learning to navigate an ableist world. Likewise, some common health disparities are linked to experiences of ableism, such as a heightened risk of anxiety, depression, poor social adjustment, and withdrawal cross-culturally (Chalk, 2015). Cultural change necessitates clarity that there is a cultural norm of ableism and possibility of inclusion. The benefits of a greater sense of community are not limited to politics at the national level like the Rehabilitation Act and the ADA. In most contexts of life – civic engagement, employment, education, among much else – a more coordinated disability community would have the opportunity to have much greater resonance on policy issues. An organised community will also have a greater ability to be proactive rather than reactive, getting ahead of challenges and barriers rather than forever having to fight for access after everyone else has it. Historically as well as today, disability is not engaged as part of institutional diversity, and the underrepresentation of efforts to interrupt ableism in the academy as well as efforts to interrupt the underrepresentation of people with disabilities as students, faculty, and staff are largely ignored (Davis, 2011). The development of social, intellectual, political cohesive community for people with disabilities is essential for change. Spivak (1988) speaking from a post-colonial perspective, argues for the need for strategic essentialism as a political tactic that minority groups need to undergo in order to fight for rights. Spivak argues that strategically essentialising identity characteristics allows people to build community and to push against various forms of oppression. While she has since clarified that essentialism can also cause minority groups to problematically interact with ‘who is in’ and ‘who is out’ and through that process become the oppressor. As a disability justice community, we must be vigilant to avoid this trap. Regarding disability in the academy we are at a moment where Frederick Douglass’ 1857 quote ‘power concedes nothing without a demand’ resonates. An organised community of disabled students, staff, and faculty thinking of themselves as a community can present demands in higher education. Full inclusion depends on both access (an equitable opportunity to participate) and success (an equitable opportunity to succeed) (Shorter-Gooden, 2013). In higher education, disabled people are still struggling to achieve access, and once we are here to educational programmes and career opportunities, and we must simultaneously focus on success. We can do this together. The Moving Maryland Forward grants and the UMD Disability Summit are admittedly just two very new examples, but the joyful embrace of community that is being exclaimed in the attendance, participation, presentations, and feedback shows that there is a hunger for this kind of community-building across types of disability, professions and disciplines. Disabled people working together to cultivate a collective voice and set of common goals as a community, and then collaborating to deliver those messages and work for the necessary changes, seems possible. Creating forums and cultivating partnerships with accomplices are clearly not the only paths toward creating a more unified community of disabled people. To end with an earlier point about the rallying cry of the 1970s disability rights ­movement  -’Nothing about Us without Us’ – the key word is the word that is repeated twice. The cry is about an identity – an ‘us’, and it is also not merely about compliance, although compliance is essential, it is the beginning. The cry is reminding nondisabled people who understand themselves as allies with us a foundational concept of solidarity with us – that we need to be in the room, with the power. The cry is about the nature of ableism which simultaneously decentres us, infantilises us, deems us unworthy, expects gratitude, invokes 310

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pity and charity, and renders us apolitical. In the current political and social climate, that sense of a community of people with disabilities as an ‘us’ is more important than ever. Perhaps it is also more achievable than ever as a result of major changes in telecommunications that make communication and coordination more feasible on a large scale. To be as effective as possible in advocating for our rights, and to have any possibility of achieving disability justice, disabled people really do need to think in terms of iterative steps towards community and justice as well as learning how to engage every one of us.

Notes 1 The authors here (both disabled and able-bodied scholars) chose identity-first language (versus people-first language, as in ‘people with disabilities’) for the majority of our paper. Identity first language has been central to the articulation of a ‘disability community’ at the University of Maryland, centralising disability as a cultural group and identity-based community on our campus. While the term ‘disabled’ has been used pejoratively against some of us and others in the disability community, we believe that part of understanding disability as identity is part of our justice work and that saying ‘people with disabilities’ does not interrupt ableism in all its manifestations. We believe both identity-first and people-first language is necessary for the disability justice work that is needed in our world. 2 See Chapters 23 and 25 in this volume and for further information on the various ways that ableism operates within academia. 3 While these numbers from 1986 are quite old, no parallel study has been done. While different intersections of have been explored throughout the disability community there is no data comparable to that uncovered in this study from the 1980s. Any data collection that is located in the postADA era would be especially fascinating, considering how this may have impacted individuals’ perceptions of self as disabled or part of a larger community under this policy. 4 More details can be found on their website: http://autisticadvocacy.org/projects/community/ mourning/. 5 See Chapter 3 in this volume by Joanne Sansome for further information regarding disability activism and participation in social movements.

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Beyond random acts of diversity Hong, B. S. S., & Himmel, J. (2009). Faculty attitudes and perceptions toward college students with disabilities. College Quarterly 12(3), 6–16. Hong, B. S. S. (2015). Qualitative analysis of the barriers college students with disabilities experiences in higher education. Journal of College Student Development 56(3), 209–226. International Center for the Disabled (ICD). (1986). The ICD Survey of Disabled Americans, Bringing Disabled Americans into the Mainstream: A Nationwide Survey of 1,000 Disabled People. New York: Louis Harris and Associates. Jaeger, P. T., & Bowman, C. A. (2002). Disability Matters: Legal and Pedagogical Issues of Disability in Education. Westport, CT: Bergin & Garvey/Praeger. Jaeger, P. T., & Bowman, C. A. (2005). Understanding Disability: Inclusion, Access, Diversity, & Civil Rights. Westport, CT: Praeger. Kean, R. (2017a). More than 400 people register for UMD’s second disability summit. The Diamondback, 23 April 2017. Retrieved from http://www.dbknews.com/2017/04/24/umd-disability-­ summit/ on 3 September 2018. Kean, R. (2017b). UMD students with disabilities want more campus resources and support. The ­D iamondback, 11 May 2017. Retrieved from http://www.dbknews.com/2017/05/11/umd-­studentsdisabilities-resources/ on 3 September 2018. Kudlick, C. (2011). Black bike, white cane: Nonstandard deviations of a special self. Disability Studies Quarterly 31(1) (n.p). Longmore, P. K. (2003). Why I Burned my Book and Other Essays on Disability. Philadelphia, PA: Temple University. Mann, B. W. (2018). Survival, disability rights, and solidarity: advancing cyberprotest rhetoric through disability march. Disability Studies Quarterly 38(1) (n.p). Miles, A. L., Nishida, A., & Forber-Pratt, A. J. (2017). An open letter to white disability studies and ableist institutions of higher education. Disability Studies Quarterly 37(3) (n.p). O’Toole, C. (2015). Fading Scars: My Queer Disability History. Fort Worth, TX: Autonomous Press. Puar, J. (2007). Terrorist Assemblages: Homonationalism in Queer Times. Durham and London, UK: Duke University Press. Rao, S. (2004). Faculty attitudes and students with disabilities in higher education: a literature review. College Student Journal 38, 191–198. Reed, M. J., Kennett, D. J., & Emond, M. (2015). The influence of reasons for attending university on university experience: a comparison between students with and without disabilities. Active Learning in Higher Education 16(3), 225–236. Scheer, L., & Groce, N. (1988). Impairment as human constant: cross-cultural and historical perspectives on variation. Journal of Social Issues 44(1), 23–37. Scotch, R. K. (2001). From Good Will to Civil Rights: Transforming Federal Disability Policy. Philadelphia, PA: Temple University. Scotch, R. K., & Schriner, K. (1997). Disability as human variation: implications for policy. Annals of the American Academy of Political and Social Science 549(1), 148–159. Shapiro, J. P. (1993). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York, NY: Times Books. Shapiro, J. P. (1994). Disability policy and the media: a stealth civil rights movement bypasses the press and defies conventional wisdom. Policy Studies Journal 22(1), 123–132. Shorter-Gooden, K. (2013). The culturally competent organization. The Library Quarterly 83(3), 207–211. Snyder, S., & Mitchell, D. (2010). Ablenationalism and the geo-politics of disability. The Journal of Literary & Cultural Disability Studies 4(2), 113–125. Spivak, G. (1988). Can the subaltern speak? In C. Nelson & L. Grossberg (eds). Colonial Discourse and Post-Colonial Theory (pp. 271–313). Chicago, IL: University of Illinois Press. Stoddard, S. (2014). 2014 Disability Statistics Annual Report. Durham, NH: University of New Hampshire. Stone, E., & Priestley, M. (1996). Parasites, pawns and partners: disability research and the role of non-disabled researchers. British Journal of Sociology 47(4), 699–716. Taub, D. E., McLorg, P. A., & Fanflik, P. L. (2004). Stigma management strategies among women with physical disabilities: contrasting approaches of downplaying or claiming a disability status. Deviant Behavior 25(2), 169–190.

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23 AT THE MARGINS OF ACADEMIA – ON THE OUTSIDE, LOOKING IN Refusing, challenging and dismantling the material and ideological bases of academia Armineh Soorenian Introduction I have been an independent researcher for the last six years. Without any official affiliation to an academic institution either by choice or imposed due to a lack of access and/or opportunities, independent researchers work, research and publish outside of the mainstream university environment. Some work as consultants while others may have to take on a second job outside academia to support their work. While this form of work can provide flexibility suitable to most disabled and female academics, there is often no job security or protection with irregular income if any. In the case of disabled independent researchers, a second job is often not pragmatic due to energy, time and access restrictions. This chapter is an account of the journey I have been on, and how feelings of being at the margins of academia over the years have impacted on my academic life and beyond. I will begin by writing about my story before I became an independent researcher, followed by a discussion about some of the barriers I have encountered. This reflection will lead to insights based on my first-hand experience of various challenges I am confronted with and the desire for social change in making academia an inclusive environment for disabled researchers. I arrived in the United Kingdom (UK) as a 20-year-old disabled woman with low self-­ esteem and limited English language skills. My educational journey began with a four-year period at the Royal National College for the Blind. Although the college served as an excellent platform to rebuild my confidence and restart my education after six years of discontinuation due to becoming disabled and facing countless access and educational barriers as a ­ niversity. teenager in Iran, it did not fully equip me with skills to integrate into mainstream u As a result, when I started an undergraduate degree at a University in the Midlands, I found the disabling environment of the mainstream extremely challenging. Nevertheless, I decided to continue with university education and undertake a Masters in Arts followed by a PhD in Disability Studies in a more supportive institution and completed my doctorate in November 2011 at Centre for Disability Studies (CDS) at the University of Leeds.

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The  research examined a group of disabled international students’ experiences of British higher education (HE) system, exploring the multifaceted barriers they experienced based on their multiple identities of ‘disabled’, ‘international’ and sometimes ‘mature’ students in often an integrated university environment. In my study, as alternative recommendations grounded in the social model of disability, I highlighted some policy and practice insights based on inclusive educational principles.

What next? Since completing the PhD, as an independent researcher, I have published the updated version of my thesis as well as disseminating the results of the research in several international journals and edited collections. I have presented the PhD research findings at national and international conferences that have been held across the UK. While on academic visits to University of Lillehammer, Norway, and State Pedagogy University of Yerevan, Armenia, I have delivered lectures and workshops on various aspects of inclusive education in practice. Currently as a reviewer for a several publications, I review ‘disability’ and ‘education’ related submissions and published books. By partaking on a number of authoritative committees and advisory panels as well as sharing my findings with influential organisations in the field of education, I have also informed and influenced national policy. Most academics undertake some or all these responsibilities whilst employed by an academic institution and receive subsistence. Unfortunately, I have not only been denied the opportunity of being employed by a university, but also face many persisting barriers working independently. My simultaneous struggles based on the intersectionality of disablism, academic ableism, sexism and racism have given me the much-needed impetus and strength to become an activist in the field of education, fighting for disabled people’s rights to inclusive education and academia as students, researchers or lecturers. In this way I have contributed towards furthering the cause of disability activism in education. Next, I will discuss the nature of some of the barriers I have been confronted with in my journey as an independent researcher.

Academic ableism When applying to academic posts and as an independent researcher, I have faced a complex set of attitudinal barriers. The disablism I have experienced has not concerned my visual or physical impairments as much as it has been targeted towards my speech impairment. To demonstrate an economic, political, social and cultural privileged position, it is expected of academics to master a certain form of articulation and elegance when making an argument or expressing their opinions. Having acquired a brain injury almost three decades ago, I have dysarthria, which is speech that is difficult or has unclear articulation. Outside academia, people usually respond to my slow and slurred speech in impatient or patronising ways, or both. While admittedly in academia this type of verbal treatment is largely absent, the underlying prejudice appears to be ingrained in some academic staff’s attitudes, whereby they have low academic expectations from me, or indeed doubts are expressed about my capacity to understand complex ideas. These preconceived notions are despite the fact that I have produced a large quantity of high-quality written work in English, which is my third language, and have also managed research projects. The consequences of staff’s negative attitude are that I am either not given time or space to express my arguments or my views are unrecognised and dismissed without willingness to be understood. 316

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In addition, as part of my medical condition, I need more time to process information, reflect and prepare my responses, a situation not necessarily conducive to a traditional academic culture, or typical interview situations. Everyday tasks take longer; I may require double or even treble time of that taken by a non-disabled researcher to complete the same work. Therefore, throughout my academic career, to the detriment of my physical and mental health, I have performed like a ‘super cripple’ (Oliver & Barnes, 1997) by working over and beyond the hours expected of an academic, even in fulltime employment. Some days I experience extreme fatigue as a side effect of my brain injury, which together with chronic migraines that occur on a monthly, and sometimes weekly, basis could delay the completion of work by days if not weeks. Sadly, the need for extra time and extensions are not desirable in the current neoliberal and disablist academic environment, where high productivity is expected in compressed time frames, with increasing demands on academics’ time, over the life of their fixed, short-term contracts. As Campbell (2018) argues, ableism in favour of non-disabled people is endemic in academia. Where my visual impairment has been concerned, I have received conference materials, information and handouts in hard print copies with unfulfilled promises of receiving them in electronic formats at a later date. Even the edited collections, where I have contributed a chapter, have not always been in accessible formats. However, when I do receive electronic format documents, these are mostly in PDF format, which most pieces of screen-reading software have difficulty reading. Most ironically in a conference I attended recently on inclusion in HE, the presenters repeatedly referred to the screen, saying ‘as you can see’, which was exclusionary to those participants with a visual impairment. Added to disablism, at times I have experienced discriminatory treatments on the grounds of being a non-native speaker and a woman. Sometimes writing in academic English has proved to be difficult, even after more than 20 years of living in the UK. There seems to be very little recognition and understanding of language challenges for non-native speakers in academia, most evident in some of the critical, discouraging or even hurtful feedback I have received on my journal article submissions. Reflecting and supporting the interests of the dominant White upper and middle classes, it seems that success is measured against successfully adopting the ways of the dominant group (Gabriel, 2017). Thus, White upper and middle-class males often attribute their success to their innate superior intelligence and capability, rather than recognising their privileged position providing means to socialise in the behaviours and norms of the dominant group as well as possessing advantages in access to resources and power (Gabriel, 2017). Nevertheless, when gender is considered, the disparities are even more pronounced. Women generally have less access to the structural and personal resources that enhance research productivity compared to men (Lamont et al., 2004). Neoliberal trends, characterising today’s universities’ such as heightened competition for funding, managerialism, short-term contracts and increased teaching and administrative workloads (Gill, 2009) have been specifically detrimental towards women, who tend to sacrifice their research productivity and success in acquiring research funding (Hawkins et al., 2014). Moreover, mainstream disability academics have paid little attention to how gender and disability oppressions interact and intersect in the experience of disabled women (Vernon, 1997). Disabled women’s contributions are marginal in research on disabled people, which arguably is mainly about White disabled men (Morris, 1992). As in other areas of academia, the academic high ground of disability analysis is dominated by men who have focused on such structural aspects of disability as employment, income, and housing (Vernon, 1997). Although these issues are of significance to all disabled people’s independent living, 317

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the difference in research interest between men and women is positioned on the question of priorities. For disabled women the desire for social integration exceeds the economic sphere emphasised by disabled men (Lonsdale, 1990). As a disabled woman independent academic, I  am therefore confronted with hurdles in my career advancement due to the masculine, middle-class and White character of university culture and the current neoliberal ­restructuring of knowledge production, which has triggered renewed job precariousness and ­insecurity. On the multiple nature of oppression, Barnes (1996, p. xii, cited in Barnes, 2009, p. 1) remarks: The politics of disablement is about far more than disabled people; it is about challenging oppression in all its forms […] Like racism, sexism, heterosexism and all other forms of oppression, it is a human creation. It is impossible, therefore, to confront one type of ­oppression without confronting them all and, of course, the cultural values that created and sustains them.

Resources and funding Nonetheless, the multiple oppressions experienced in relation to my academic work have been disabling and discriminatory. Lack of access to appropriate resources and support has played a key role in hindering my progress as an independent academic. For instance, the desktop computer I am currently working on is about ten years old, with an older version of the SuperNova Magnifier and Screen-Reader software. The resulting speed slows the research process, not mentioning the incompatibility of the old software with some useful websites. As another example, the ergonomic chair I sit on, often for very long hours, is over ten years old and no longer supports my back. This causes back pain and exacerbates the fatigue I experience. As academics, we are encouraged to constantly keep up to date with the research in our field, yet since I am not affiliated to an institution, not being able to access online journal articles to read about new research is the most significant non-disability related barrier I have faced thus far. On occasions, I have asked my friends who work or study at an academic institution to download some topic-specific articles; in those cases, although I have been grateful for their support, I remain at the mercy of their time and judgement as to what articles they deem relevant. That said in most part, I use readily available online resources for my publications that are somewhat outdated, reflecting old research, a point for which my articles have been criticised. Converting inaccessible documents, be it PDF or scanned files to accessible format, mainly in Word files, is a process which can prove expensive and time consuming. It is expected of me to meet these costs even though working independently I do not have a regular income. Additionally, working independently, I do not receive ‘Access to Work’ and cannot recruit personal assistants (PAs), who have appropriate training and skills for working in an academic environment. On a few occasions I have used my Direct Payment PAs to assist me with certain aspects of research, but I have mainly relied on friends and my partner to help me with searching the Internet, proof-reading and general research administrative tasks. Since the help given is on voluntary basis, an imbalanced relationship is automatically created, where they may feel obliged to help. This was most evident in my recent academic trip to Armenia, where for the lack of funds, I was expected to live and work in a different country without PA support. As my partner could not take time off from work, I had no choice but to ask my parents to travel to 318

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Armenia to assist me with my daily living and work. Although my parents happily supported me during my ten-day stay in Armenia, this put an unnecessary strain on our family dynamics on many levels. Firstly, it was extremely taxing for my aging parents to keep up with my busy academic schedule in order to support me with my work. Secondly, I did not want to trouble my parents with all my daily support needs to the extent which I did. Thirdly, where the normative academic is constructed through a discourse of efficiency and productivity against which disabled academics are measured and evaluated, requiring self-governance to produce themselves as ‘good enough’ academics (Waterfield et al., 2017, p. 327), being dependant on my parents for support needs may have given the contrary impression. Finally, I have lived away from my parents for over two decades and they are unsure of my abilities, so asserting myself in a professional environment when ‘help’ was not welcomed presented difficulties. Lack of funds also meant that I could not employ a professional translator, and instead I had to rely on a volunteer translator with limited subject specific vocabulary; most of my lecture was therefore lost in translation. During this trip, as well as when I attend conferences, I have to fund my accommodation and food expenses from my private budget. In some cases, the cost is doubled considering I must also pay for my PA’s living expenses. Academic conferences provide opportunities to exchange ideas for early-career researchers, yet challenges in accessing conferences and informal networks makes it more difficult for disabled academics to promote their research, which may have a greater impact on their career progression. Thereby, academia poses disabling contexts for academics. Disabled academics are expected to take on themselves the responsibility of their disability-related needs, navigating accommodations without institutional support (Waterfield et al., 2017). Long-term academic mobility is a significant career move and yet often stands in conflict to disabled people’s personal lives. While moving is often stressful at the best of times, in the UK context, disabled people also need to take in to account the support of their local authorities to meet their disability-related needs and requirements. This situation places more demands on disabled academics than on non-disabled scholars since often mobility schemes are designed around non-disabled masculine practices without considering the existence of disability and impairment-related access and other needs. These tensions may be exacerbated specifically in a neoliberal context where support structures and transparent career paths are fading, and thus felt more acutely by the disabled academic community, especially independent scholars. In these ways ableism relations privilege and entitle certain academic bodies.

Emotional impact The barriers I have experienced thus far in my journey of being an independent academic have been multi-layered and multifaceted. The underlying oppression has been damaging and destructive to my self-esteem, resulting in years of feeling inadequate and uncertain, despite clear proven successes. The layers of oppression I have accumulated inside myself have become internalised resulting in permanent panic, depression and competition with others. ‘Internalized oppression is not the cause of our mistreatment; it is the result of our mistreatment’ (Mason, 1990, p. 1). I have blamed myself for the disadvantages I have experienced instead of considering these beliefs as being constructed within me by damaging and oppressive, socio-economic political systems. My perceptions of myself reflect the attitudes and actions of others towards me, affecting my confidence in not only an academic sphere but in other areas including social life. In university organised events, for example, I feel as an outsider, hesitant to contribute, even when the group consists of people who I know. 319

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The way my speech impairment has been dealt with in academia has made me reluctant to speak, as it has left me feeling that I would not be understood, so why try? The sense of isolation I experience on a daily basis when researching and writing on my own, without access to a network of colleagues to share ideas or to a mentor to guide and give advice on research projects has further reinforced the oppression. What is more, having studied in HE for over a decade, it is both disempowering and demeaning to receive hardly any income and remain financially dependent on my partner. I remain academically productive yet, unlike my peers who work in an institution, I am not supported financially for the work I do; I am, in essence, working unpaid and paying out of my own pocket. As one of the prominent figures in the field of Disability Studies, Mike Oliver (1992, p. 102) referred to the discipline thusly: ‘Disability research should not be seen as a set of technical objective procedures carried out by “experts” but part of the struggle by disabled people to challenge the oppression they currently experience in their lives.’ On the Centre for Disability Studies’ website (CDS, 2018), the centre promotes the following approach amongst the international research community: We seek to adopt ‘committed’ participatory methods in our work. […] Our taught courses draw directly on the experiences and issues raised by the disabled people’s movement and many of our staff and post-graduate students have been disabled people. It is therefore both surprising and disappointing that even the field of Disability Studies is somewhat removed from employing or working with disabled academics, especially those without affiliation to any institution. Instead the field is recruiting non-disabled people who have little experience of disability or indeed impairment. This exclusion seems to be grounded in society’s failure to accommodate the needs of disabled p­ eople. Employing disabled researchers can have serious resource implications that need to be addressed properly by all involved (Oliver & Barnes, 1997). The more complex one’s impairments are, the less desirable her/his employment prospects tend to be. This oversight marginalises disabled people’s accounts and contribution to the production of knowledge that has the potential to be accommodating, more aware and sensitive of different needs. Conversely by adopting universal design principles, academia arguably can not only be inclusive to disabled people but a diverse array of people with a range of backgrounds.

Conclusion As a disabled woman, independent academic and activist with a different cultural and linguistic background positioned outside UK academia, I have been subjected to the violence of the neoliberal academic system. The structural violence and microaggressions have led to disavowal and suppression of my experiences, while at the same time legitimatising the complex webs of structural inequalities pervading academic institutions. The side-­lining of disabled academic and activist research has resulted in the exclusion and thereby wastage of disabled people’s experiences and skills, a very unjust system, which ought to be thoroughly challenged by all those concerned with continuing disability rights. As Meyerhoff and Noterman (2017, p. 22) state, ‘Rather than trying to work merely within the system to fix it, we should try to overcome it—grappling with the tensions of being in but not of it.’ To this end, disabled researchers must have an equal access not only in the field of disability research, but in research generally (Oliver & Barnes, 1997). The research environment

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should cultivate alternatives and be made totally inclusive by seriously considering physical and informational accessibility issues, flexible work hours, access to research resources and funding, support systems, but most importantly changes in attitudes. The new system must provide opportunities to engage in politics and attend to the intersectional ethics of solidarity with everyday acts of resistance in academia. As a collective political project, informing equality practice is a key in addressing unequal distribution of resources and social power and transforming the institutional culture both within and outside academia. As such disabled scholar activists should be encouraged to sit on various funding committees to share their experiences and perspectives, promote disability research, raise awareness of disabled academics, and offer recommendations to remove barriers in funding projects lead by disabled researchers. This can then help to bring about a significant change in the current structure of academia. Independent researchers’ status must be recognised, and we need to be treated equally and fairly with appropriate support and resources. As disabled scholar activists, we should feel empowered to speak out about our experiences, the impacts of humiliations and degradations in academia, acknowledging the accumulative effects of oppression – the ableist exclusions and practices (Campbell, 2018). We need to be enabled to work collectively not only with other disabled academic support groups, but also form coalitions with other peripheral groups in university environments in mainstreaming ableism as an exclusionary practice, that which goes beyond disability and challenges difference in all its forms. Through these changes the masculine, middle-class and White culture of academia would be more sensitised to accommodate women and academics from different cultural or diverse backgrounds, offering more support and opportunities to network, progress in their careers and be academically mobile. It is in this environment that independent researchers with a diverse range of backgrounds will feel supported, passionate and able to conduct research on their topic of interest, and thus driven and motivated in their career pursuits.

Post-script Since writing this chapter, I have secured a research position with the Alliance for Inclusive Education (ALLFIE), an organisation led by disabled people concerned with campaigning and information-sharing on different education issues. Funded by the Disability Research on Independent Living and Learning (DRILL) grants programme, the research project I am leading focuses on the effectiveness of secondary schools’ Accessibility Plans. I am strongly committed to this project and cherish the opportunity to have a positive impact on disabled children’s education. However, sadly such stimulating posts are often not available to disabled researchers as my own experience proved. To reach this stage, I had to endure over six years of independent work in an unpaid capacity with no institutional support, a situation not comparable or even comprehensible for a non-disabled researcher. After the completion of this p­ roject, there is no guarantee I will find another post and the principles of this chapter still apply.

References Barnes, C. (1996). Introduction. In J. Campbell & M. Oliver (eds), Disability Politics: Understanding our Past, Changing our Future (pp. 3–24). London: Routledge. Barnes, C. (2009). Disability in a majority world context: a materialist account. Retrieved from http:// www.leeds.ac.uk/disability-studies/archiveuk/ on 8 August 2018.

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Soorenian Campbell, F. K. (2018). The violence of technicism: ableism as humiliation and degrading treatment. A Keynote in Ableism in Academia Conference. Retrieved from http://www.academia.edu/36198755/DR_ FIONA_KUMARI_CAMPBELL_The_Violence_of_Technicism_Ableism_as_­Humiliation_ and_Degrading_Treatment_A_Keynote_Ableism_in_Academia_Conference on 8 August 2018. Centre for Disability Studies (CDS). (2018). What is the Centre for Disability Studies (CDS)? Retrieved from http://disability-studies.leeds.ac.uk/about/ on 8 August 2018. Gabriel, D. (2017). Race, racism and resistance in British academia. In K. E. I. Fereidooni (ed), Rassismuskritik und Widerstandsformen (pp. 493–505). Wiesbaden: Springer. Gill, R. (2009). Breaking the silence: the hidden injuries of neo-liberal academia. In R. Flood & R. Gill (eds), Secrecy and Silence in the Research Process: Feminist Reflections. London: Routledge. Hawkins, R., Manzi, M., & Ojeda, D. (2014). Lives in the Making: Power, Academia and the Everyday. Acne: An International E-Journal for Critical Geographies 13(2), 328–351. Lamont, M., Kalev, A., Bowden, S., & Fosse, E. (2004). Recruiting, promoting, and retaining women academics: lessons from the literature. Retrieved from https://www.academia.edu/2885216/­Recruiting_­ Promoting_and_Retaining_Women_Academics_Lessons_from_the_Literature on 8 August 2018. Lonsdale, S. (1990). Women and Disability: The Experience of Physical Disability among Women. Basingstoke: Macmillan Educational. Mason, M. (1990). Internalized oppression. In R. Rieser & M. Mason (eds), Disability Equality in Education (pp. 27–28). London: ILEA. Meyerhoff, E., & Noterman, E. (2017). Revolutionary scholarship by any speed necessary: slow or fast but for the end of this world. ACME: An International Journal for Critical Geographies. Retrieved from https://acme-journal.org/index.php/acme/article/view/1429/1307 on 8 August 2018. Morris, J. (1992). Personal and political: a feminist perspective in researching physical disability. Disability, Handicap & Society 7(2), 157–166. Oliver, M. (1992). Changing the Social Relations of Research Production’, Disability, Handicap & Society, 7(2), 101–114. Oliver, M., and Barnes, C. (1997). All we are saying is give disabled researchers a chance. Disability & Society 12(5), 811–814. Vernon, A. (1997). Reflexivity: the dilemmas of researching from the inside. In C. Barnes & G. ­Mercer (eds), Doing Disability Research (pp. 158–176). Leeds: Disability Press. Waterfield, B., Beagan, B., & Weinberg, M. (2017). Disabled academics: a case study in Canadian universities. Disability & Society 33(3), 327–348.

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24 SENSITISATION Broadening the agenda to ‘include’ persons with disabilities Pragya Deora

Introduction During my student life at the university, I have worked with my team on a number of issues concerning persons with disabilities such as: improving access to information; exploring the latest technologies and assistive devices; working towards a barrier-free campus; ensuring proper functioning of computers and necessary software and introducing accessible voting (Deora, 2016). Sensitisation of non-disabled people about issues of persons with disabilities is one of the key concerns for all those involved in disability activism on campus. There are people who are unaware of the ways through which persons with disabilities can perform activities and excel in them. They do not realise how their insensitivity ­towards the issue of disability creates barriers for persons with disabilities. Sensitisation of non-­d isabled people is extremely important. However, sensitisation of this kind is incomplete. By focusing only on this limited understanding of sensitisation, important aspects are being missed out. These need to be included if persons with disabilities are to be truly empowered and fully included in society. In this chapter, I elucidate this argument through my life experiences and those of other students with disabilities1 at Jawaharlal Nehru University ( JNU) located in India. Persons with disabilities are a part of the existing culture. Culture plays an important role in the life of its members. It also presents to the individual, many stereotypes and existing power hierarchies in various forms. Individuals are exposed to and often imbibe, to different degrees, the dominant perceptions, ideas, beliefs and approach to various issues. It is therefore necessary to recognise that persons with disabilities too, can have stereotypes and a particular way of thinking that require change to create a just society.

Disabled vis-à-vis disability Mere acquisition of impairment does not entail acquisition of a broad perspective or inclusive attitude towards different forms of impairments, or even that of one’s own. My own life history is a case in point.

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For many years, I had not accepted my visual impairment. I made attempts to conceal it from the world, even if it meant being misunderstood by people, amongst other things. It was disability studies that played the biggest part in changing my perspective on disability. I started viewing disability through the social model (Oliver, 1983). This perspective held that it was not impairment which was the source of the problem, but society that resulted in impairment becoming a disability. For instance, as per the social model, the reason why an individual using a wheelchair cannot access a particular place in a building is not because the person cannot walk like any other person. However, it is because the building has been constructed in a manner that does not allow a person in a wheelchair to move around independently. I always had an enthusiasm to solve social problems. My training in sociology gave me a holistic understanding of society. All this transformed me from a person who hid her impairment into a person who worked to solve issues confronting persons with disabilities. The environment of my university, which encouraged activism, acted as a catalyst. For instance, after falling from a staircase in my university, I channelled my emotional and physical pain into talking with the administration to further develop infrastructure in a manner to ensure the safety of persons with disabilities. In another instance, after becoming the Convenor of ‘JNU Visually Challenged Students’ Forum’2 for 2013–2014, in order to ensure equality of opportunities for visually impaired vis-à-vis non-visually impaired students, we asked the librarian to have a person to scan books, so that visually impaired students would not have to spend hours scanning books before they could even begin reading.3 Taking the argument further, having an impairment does not imply that the person would understand another person with a different type of impairment. There have been instances where a person with particular impairment(s) has not understood or realised the issues faced by a person with other type(s) of impairment(s). In what follows below, I illustrate how sometimes persons with disabilities contribute to creation of disability.4

Inaccessible environment At JNU, a few wheelchair users kept their wheelchairs outside their rooms, thereby covering a significant portion of the passage. As a result of this, some visually impaired students found it difficult to navigate in the hostel. A student recalls that it was only after repeated requests and reminders that one such wheelchair was finally kept inside the room.

Incomplete inclusion At JNU, as stated above, there is a forum of visually impaired students that takes up issues concerning them. There is a researcher who is deaf blind (blind and can hear using hearing aids). In meetings of the forum, there have been instances, where visually impaired students would probably forget about ze’s5 presence and start speaking at a volume lower than that what ze could hear. Further, forum leaders have not always ensured availability of a microphone in forum meetings and programmes, which makes it difficult for ze to follow what is being said.

Marginalisation at conference In another incident, in a conference on disability, due to shortage of time, each presenter was given lesser time to speak as compared to the initial time allotted. Such a thing is very

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common in conferences, and in such a situation, presenters often increase their speed. A similar thing happened in that conference as a result of which, ze could not follow what was being said. Thus, in a conference on disability itself, we find marginalisation.

Neglect of mental health and invisible impairments Through my interactions with persons with schizophrenia, I realised how unaware I was about the challenges that they were facing. This also led me to observe that there was near absence of discussion on invisible impairments like autism and schizophrenia in conferences on disability organised by students with disabilities on campus.

Targeting sensitisation at persons with disabilities In India, the recently enacted ‘The Rights of Persons with Disabilities Act 2016’ covers twenty-one impairments as opposed to seven in the now repealed ‘The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995’ (Government of India [GoI], 2016a;GoI, 2016b). However, an Act coming into force does not mean that all persons of different categories of impairments covered in the Act would know and understand each other’s impairments. For instance, an acid attack victim who is covered under the 2016 Act might not be aware of the technology that persons with visual impairment use to discharge their duties, or a person with physical impairment might not know much about mental illness, and vice versa.6 It therefore becomes important for sensitisation to be targeted at persons with disabilities as well. In the past, I have witnessed some people expressing disappointment about the fact that not many non-disabled people have made it to our conferences on disability, and that most of the people attending are persons with disabilities themselves. Certainly, greater participation of non-disabled people would have been desirable in those conferences. However, what is seldom realised is that these conferences are also opportunities where persons with different impairments can understand each other’s needs and challenges. Once a senior with a particular physical impairment had told me that ze did not know about the talking software that blind students use nor about cerebral palsy until ze had met people with these disabilities at JNU. Thus, the assumption that all persons with disabilities have knowledge about other impairments would in fact lead to the exclusion of persons with disabilities from awareness on the one hand, and from a healthy interaction with persons with different impairments on the other.

Beyond disability Several questions come to mind. Is such an agenda of sensitisation that creates awareness about disability amongst disabled and non-disabled people still incomplete? Is this agenda of sensitisation still falling short of what it should encompass for the empowerment of persons with disabilities? The answer is yes. A person with disability is not just a person with disability. That is, the identity of a person with disability is not limited to the impairment alone. There are various other aspects such as social identities (e.g. gender, class, caste, religion), the social setting along with the individual characteristics of a person that contribute in varying degrees to the formation of an individual’s identity. These can lead to hierarchies. These social hierarchies play out

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in daily interactions of persons with disabilities wherein they can be both victims as well as perpetrators of these power hierarchies and stereotypes. To elucidate, in the following paragraphs, I focus on persons having a particular impairment (visual impairment). One can find similar examples relating to persons with other impairments as well. The idea is to bring forth that within persons belonging to one form of impairment, there is heterogeneity that is sometimes accompanied with stereotypes, prejudices and situations characterised by inequality.7

Region At times people have certain stereotypes about persons from other regions. Incidents have taken place where people from North East India have faced discrimination in North India. Some low vision non-North Eastern Indian men had once commented about a blind woman from North East India. They said that they had thought that since the girl was ‘blind’, she would be proper and decent even though she was from North East India. But after looking at the way she was dressed, they thought that she was like other girls from North East India and was not of a good character. Another case was that of a blind person from Tamil Nadu, which is a state in South India. It has had agitation relating to Hindi language. When this person joined JNU situated in North India, ze was told by some people that since ze was from Tamil Nadu, ze would not like Hindi language. This had made ze extremely uncomfortable. Ze’s views had not even been sought!

Religion Religion is another sphere where one finds prejudices. A Muslim visually impaired student had later learnt from a Hindu visually impaired friend that the Hindu friend had been advised by other Hindu visually impaired people not to befriend him because he was a Muslim. Similarly, a Muslim visually impaired man who was dating a Hindu blind woman was confronted by other Muslim visually impaired friends and acquaintances expressing displeasure at her choice of dating a Hindu woman. The woman was also confronted with a similar situation from her Hindu visually impaired contacts. As pointed out to me by a Muslim friend, a blind Hindu person was probably feeling the pressures of compliance with Muslim culture when ze was in a Muslim majority area.

Language incompetence Competence in a language influences a person’s ability to communicate with others. Some students with visual impairment are unable to participate to the fullest in political activities due to their inability to speak the language(s) spoken by the majority of people in that group. As a result, they have found themselves at a marginalised position even in a group of persons having the same type of impairment. This is not something specific to a particular region of India. In one region, a particular language is spoken by the majority and in another region, that same language is known to very few.

Gender discrimination Gender discrimination can also come from other persons with disabilities. There have been instances where blind women have been harassed by men with visual impairment.

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Unwanted deliberate physical contact and verbal comments are some examples of what some visually impaired women have experienced. Sometimes gender stereotypes are internalised by women as well. For instance, there is a WhatsApp group of students with visual impairment at JNU; but a woman with visual impairment does not take part in the conversations on the group as she feels that talking too much on a public platform is not appropriate for women. Attitude of certain persons with disabilities towards non-disabled persons can also be characterised by social hierarchies. For instance, in the above-mentioned example related to a woman from North-East India, prejudice of some visually impaired persons towards women from North East India is evident. A few women have shared with me that they have found certain men with disabilities indecent due to their inappropriate gaze or body movements.8 Thus, to ensure that relationships in the lives of persons with disabilities (with other disabled and non-disabled people) and daily interactions are based on empathy, respect and equality, sensitisation needs to be targeted at persons with disabilities as well. Even for persons with disabilities, who are victims of discrimination, harassment and power hierarchies, it is important that there is its recognition and an understanding of why it is happening and what is right and justified. Shifting the perspective from an individual problem to a social problem and being aware about various laws and rights would enable the individual to deal with it in a better way. The above illustrations have been chosen to present a particular line of thought. This, of course, does not mean that prejudice and discrimination is the norm. For instance, in the example mentioned above, persons of different religions eventually became friends. A couple of years ago, some of us had gathered to congratulate a student with cerebral palsy for being awarded a PhD. There, a person with orthopaedic impairment sensed that one of his acquaintances was about to pass an inappropriate comment directed at a woman and stopped him immediately. With regard to cultural diversity within India, so often I find my friends with visual impairment fondly discussing about food, languages and songs of different regions of the country.

Conclusion As part of student activism, while formulating programmes for sensitisation, the focus needs to be on persons with disabilities as well. This has to be done on two fronts. First, with reference to different impairments; and second, relating to social variables beyond impairments.9 Sensitisation in one’s student life can go a long way. If students with disabilities are sensitised, it has the potential of affecting the lives of other disabled and non-disabled persons in schools, universities and beyond. Persons with disabilities play a part in shaping society. For example, the 2011 census of India reports that there are 207.8 lakh10 households having disabled persons, which constitutes 8.3% of total households (GoI, 2015). With growing empowerment through education, employment, entrepreneurship and political participation, the role of persons with disabilities in society will increase. In the case of the above discussed university, a few steps have been taken, which would lead to greater sensitisation of persons with disabilities. However, a realisation and a clear focus on this, seems to be missing, This could be the case elsewhere. It is time we expand the focus to include ourselves. Views expressed by the author are personal.

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Notes 1 My experiences with reference to JNU are roughly between the period 2012 - 2017. Experiences shared by my friends, which they told me so that I could include them in this paper to further explain my argument, are not limited to JNU but include those which happened elsewhere. These experiences have been shared between 2017 and 2018. Thus, the analysis may or may not be true for 2018 onwards as the situation might have changed. 2 JNU Visually Challenged Students’ Forum is a group of visually impaired JNU students. It was created by visually impaired students more than a decade ago to facilitate communication between them and to take up issues confronting them in a collective manner. Elections are held every year to elect its various office bearers and events are organized annually by the forum. The forum has played its part in dealing with a number of issues like the creation and maintenance of a unit in the library for visually impaired students with the requisite facilities; provision of laptops to visually impaired students; ensuring accessible and independent voting in student elections; working towards a barrier-free campus in terms of infrastructure; fulfilment of reservations for disabled persons in admissions to JNU; ensuring entrance examinations to JNU are accessible; raising reader allowances and so on. 3 One of the reading methods used by persons with visual impairment is through text to speech software in computers. This software can read books that have been scanned in specific formats like Word, PDF etc. 4 Through these examples it is not being implied that the lack of awareness and sensitivity is unidirectional, that is, persons with a particular disability are unaware or insensitive about the issues of persons with another specific disability, and that the case cannot be vice versa as well. Any such conclusion on the basis of these examples would be erroneous as this is not an exhaustive list, and in some cases, instances contrary to such an assumption have been witnessed. 5 Ze is a gender-neutral term and is used to avoid gender specific terms like he or she. 6 Since the focus is on categories mentioned in ‘The Rights of Persons with Disabilities Act 2016’, terms like ‘acid attack victim’ and ‘mental illness’ as mentioned in the Act have been used. 7 A few examples have been discussed here to explain the thought being presented. This is not an exhaustive list containing all grounds of social hierarchies and discrimination that might exist. 8 The behavior which made women uncomfortable might be intentional or unintentional on the part of men. However, it is essential for men to understand that that act is making women uncomfortable. At the same time, it is also possible that women are assuming that men are doing certain acts but it is something connected to their disability and that it is their disability that is resulting them to be different from the dominant ethical way of behaving. Thus an understanding of each other’s issues becomes important. 9 There are other activists and academicians who have been thinking on similar lines. For instance, people are talking on social media about the need to understand various disabilities and disseminating information about the same. For quite some time, some activists have been calling for a movement where persons of different disabilities come together, and cross-disability events have also been organised. Nilika Mehrotra and Deepa Palaniappan have presented papers about differential positions of people belonging to different disabilities and intersectionality. With both these scholars I have had discussions on disability and it is possible their thinking has influenced my present line of thought. Some literature on intersectionality and disability in the Indian context is also present (Mehrotra, 2016). 10 This is a unit in the Indian numbering system meaning 100,000.

References Deora, P. (2016). Digital voting in JNU: a significant inclusion. The Asian Age. Retrieved from http:// www.asianage.com/india/all-india/021216/digital-voting-in-jnu-a-significant-inclusion.html on 23 December 2017. Government of India [GoI]. (2015). Census data on disabled population released. Retrieved from http://pib.nic.in/newsite/PrintRelease.aspx?relid=122878 on 25 December 2017. Government of India. (2016a). The Rights of Persons with Disabilities Act, 2016. Retrieved from http://www.disabilityaffairs.gov.in/upload/uploadfiles/files/RPWD%20ACT%202016.pdf on 31 January 2018.

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Sensitisation: broadening the agenda Government of India. (2016b). Rights of Persons with Disabilities Bill 2016 Passed by Parliament. Retrieved from http://pib.nic.in/newsite/PrintRelease.aspx?relid=155592 on 23 December 2017. Mehrotra, N. (2016). A resource book on disability studies in India. Retrieved from https://www. jnu.ac.in/Faculty/nilika/A%20READER%20ON%20DISABILITY%20STUDIES%20IN%20 INDIA.pdf on 21 December 2017. Oliver, M. (1983). Social Work with Disabled People. Basingstoke: MacMillan.

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25 RAINCLAMATION How installation art can reclaim space, transform collective suffering into poetic resistance and bring aesthetics to disabled viewers Erin Davenport Introduction The term ‘rainclamation’ is a portmanteau of rain and reclamation. It is also the name of an art installation I completed with my friend Sarah Gompper at our undergraduate institution, Davidson College, located in the United States of America (USA) in North Carolina. The project consisted of installed visual art which is mounted on the walls next to elevators in two campus dormitories. Across the course of the project, we explored the intersections between queerness and disability, used archival material to claim kinship with disabled ancestors and fought back against subtle institutional suppression to create a space of our own design that reclaimed space for the disabled community. Elevators are an important tool for many disabled individuals, yet their use has not always been well understood. In a chapter on disability and technology in their book The Disability Rights Movement: From Charity to Confrontation, Fleischer and Zames (2012) detail an incident when elevator use was at odds with one influential figure’s vision. It was 1989, and Mother Teresa was planning to build a homeless shelter in New York City devoid of any modern technology. She was surprised to find out, however, that an elevator was required by city code. Indeed, ‘not recognising danger – as well as the humiliation – to mobility-impaired people, Mother Teresa intended to have them carried up and down the stairs’ (Fleischer & Zames, 2012, p. 153). Such patent misunderstanding begs the clarification Fleischer and Zames (2012, p. 153) dutifully provide: ‘not merely a gratuitous time or labor-saving convenience, the elevator for a person unable to climb stairs means independence, dignity, and equality’. Problems of access extend into the university and higher-education setting but are rarely acknowledged as significant issues of social inequality. As Adams (2013) writes in her memoir, despite being a mother of a child with an intellectual disability, she failed to see problems of physical access until a disabled colleague struggled to attend a meeting Adams had assumed was accessible. Adams (2013, p. 204) states: Her troubles weren’t a distraction, they were a vivid illustration of why we were there. My project had to address (…) the very real challenges of access that determined whether people with disabilities would be genuinely included in the life of our university. 330

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Despite their occasional use by non-disabled people, elevators at our school are one of the spaces most associated with disability. This context and history shaped our conception of the project, along with personal memories which we politicised. Specifically, my nondisabled roommate Sarah was reflecting on when we first lived together on the second floor of a campus dormitory our first year. Even though there was an elevator in the building, when there were other students around I would push myself to use the stairs, despite the pain this would cause me because of my disability. Sarah mentioned this, several years later, as the starting point for a conversation about art and activism. She asked me to remember the situation and said: ‘When we would walk in with others, you would never take the elevator’, and then, thoughtfully, after I confirmed her suspicion that social stigma had made me uncomfortable using it, asked ‘What can we do to change that?’. We focused in on what had caused my elevator avoidance. As the conversation evolved, it became clear to both of us that my reasoning for avoiding the elevator hinged on being seen to passersby during those tense seconds when I would wait for the elevator to arrive. As a young college student in a new place, attempting to forge my identity, being labelled by observers as ‘disabled’ disturbed me, something I now recognise was internalised ableism. Still, it also references a culture in which we gawk and marvel at disabled bodies. Garland-­Thomson (2009, p. 14) brilliantly explores this phenomenon, describing how, ‘Staring establishes a social relationship between starer and staree. It is an interpersonal action through which we act out who we imagine ourselves and others to be’. Garland-Thomson (2009, p. 20) explains that, ‘The visibly disabled body intrudes on our routine visual landscape and compels our attention, often obscuring the personhood of its bearer.’ Thus, the seemingly innocuous act of looking is imbued with power. This type of staring is related to and compounded with Mulvey’s (1975) phenomenon of the male gaze to make visibility a point of tension and fear that I experienced as a disabled woman.

Art We felt an urgent need to redirect this gaze and viewed constructing art around the elevator as a possible solution. With art on the walls, we proposed, a viewer’s interest would shift away from disabled bodies, and move to disabled aesthetics: namely, our art. However, offering visual interest to non-disabled passersby was not our primary purpose. Most importantly, we sought to provide artistic comfort to (my fellow) disabled people, as a means of reclaiming the space around the elevator. Art’s ability to transform space has not been covered exhaustively in the disability studies literature, which has often focused on more structural, rather than aesthetic, changes which are necessary to provide accessibility. We know, however, that art can have a profound effect on people. For example, one study which aimed to assess the impact of adding art to a hospital unit found that ‘the embellishment of health care spaces by art could positively act on patients’ well-being’ (Trevisani et al., 2010, p. 853). Another study which examines art in the workplace illustrates, ‘the possible benefits of exhibiting art in the workplace’ (Smiraglia, 2014, p. 294). It is clear that art’s transformational power offers an opportunity for the spaces which were not built for us, to nonetheless be transformed by us. Furthermore, art in the university setting has the potential to unsettle power dynamics when completed by disabled students, whose needs and political alignments may not match institutional priorities. We did face barriers in this political expression, however, when we were forced to sanitise the intention of our project in order to make it palatable to college administrators. When we first met with an administrator, he assured us that he saw the benefits of our proposed 331

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project. His only caveat involved the universality of space in the dorms. He implored us, saying: ‘You can do this, but just don’t make it too political, alright?’, and cited an example of a mural which had been allowed for the multicultural house, but which would, ‘Never have been acceptable in a dorm building’. Citing the need to have dorm spaces which appealed to any and every student’s aesthetic, he encouraged us to make our artistic expression apolitical. Of course, our art resists this limitation because, as Barnes and Mercer (2001, p. 529) state, ‘The current Disability Arts Movement emphasises “the potential of disability arts as a progressive, emancipatory force at both the individual and social levels”’. Eisenhauer builds on their work to argue that, ‘Central to the Disability Arts Movement is a critical interrogation of the cultural construction of disability through the “growing politicisation of disabled people”’ (Eisenhauer, 2007, p. 7). As they suggest, our politics were indeed inseparable from the work we were proposing. Additionally, I would argue that the idea that any space can be apolitical fundamentally ignores the role of aesthetics in reiterating the politics of inclusion and exclusion. The dorm space before we entered it was in no way ‘neutral’. Its brick exterior and neoclassical aesthetic reference the college’s history, a history involving a legacy of slavery which a recent campus commission has sought to investigate further. Its ‘handicapped’ rooms, separated from the main hallway, create spaces of difference that reiterate social divisions. The idea that before we sought to change it, the space was neutral is fundamentally flawed. Even so, because this administrator’s approval was so central to our continuing the project, we audibly agreed with him and silently conspired to use the art itself to subvert his ideas. Once we had obtained permission to create art in the dorms, we applied for funding from Davidson Arts and Creative Engagement, a group designed to fund arts on campus. With funding granted, we began work on the project in October of 2016.

The project The artistic concept was extremely collaborative, and since our communication styles lent themselves to freestyle brainstorming, the major themes of the project came together quite quickly in a late-night conversation. We were extremely focused on the notion of reclaiming space, since we felt the elevator had lost its function if its targeted population (i.e. disabled people like myself ) felt uncomfortable using it. Other disabled students I spoke to had similar opinions of the space, and so we knew it was an issue playing on several people’s minds and cause of tension. To reclaim space, we first needed to put the art close to the elevator waiting area. We considered putting art inside the elevator, but realised that such a choice may defeat the purpose. If we made the inside of the elevator aesthetically appealing, nondisabled people might be more likely to use the elevator even if they did not need to, creating access problems for disabled people who needed the elevator. Settling on the wall space next to the elevator as an ideal compromise, we brainstormed various design concepts. We began to talk about one of the experiences that brought me fear as disabled person: rainstorms. The physical symptoms of my disability include a lack of balance. I am particularly worried about falling and injuring myself when rainy conditions make the ground slippery. I realised that rain was something which had in the past caused me a great deal of stress and pain. It thus fit perfectly as a visual theme, since we could reclaim it (or rainclaim it) and use it as part of the visual inspiration for our art. A specific prompt I gave Sarah was when I said, ‘What would rain look like running through colour?’. I was inspired by an episode of a USA television show called Project Runway. This show focuses on fashion design through creative prompts. In one episode, contestants were asked to create clothes fit to walk down a 332

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‘Rainway’ (their own portmanteau). One contestant, Sean Kelly, created a white dress with sewn-in dye packets. When the white dress hit the runway and rain poured down on it, the water activated the dye in the packets, streaking colours down the formerly all-white dress. After showing Sarah this video clip, I saw her eyes light up and instantly knew we had a working concept. Brainstorming further, we decided we weren’t satisfied with simply putting abstract art on the walls. We wanted more, and specifically sought a way to incorporate words into the project. The genre of erasure poetry, described by the American Association of Poets as a, ‘form of found poetry wherein a poet takes an existing text and erases, blacks out, or otherwise obscures a large portion of the text, creating a wholly new work from what remains’

Figure 25.1  One of the panels installed as part of Rainclamation.

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came to mind (Erasure Poems, 2014). Authors of erasure poetry take existing documents and block out some words, retaining others and crafting meaning out of what is left. We were drawn to the genre because we thought it fit well with the reclamation theme. We decided I would do archival research through Davidson’s Archives and Special Collections department to get source material for the poems and I told archivist Caitlin Christian-Lamb, who I worked with on the project, that I needed ‘ugly documents’ or ones which showcased the difficulty of being disabled at Davidson. This way, when Sarah and I erased them, this would be a third level of reclamation. Disability was largely unacknowledged in the Davidson archives, which makes sense given that although Garland-Thomson (2009) describes the spectacle of disability throughout her work, disability was still not very acknowledged as a social identity during the time period we were investigating (Davis, 2015). One old admissions application did ask applicants: ‘Do you have any physical defects?’, yet we could not find any others which explicitly traded in the ableism we assumed had been present. After reconsidering our goals, we decided to look for a different sort of document, one which more subtly hinted at disability exclusion. This new direction led us to many more documents that matched our criteria. In the end we chose an introduction letter to a physical education manual and a memo describing physical fitness programming. Physical education has been a longstanding graduation requirement at Davidson, and these documents showcased what I would label an institutional obsession with perfecting bodies. Dr John Rood Cunningham, President of Davidson College from 1941–1957, writes in his introduction to the physical fitness manual that, ‘Davidson College believes in the importance of the whole physical activity program which has to do with the building of strong bodies and the cultivation of acquaintance, sportsmanship, and character’ (Cunningham, n.d.). In the same booklet, the director of intramural athletics, A. Heath Wittle, promises students that their involvement in intramural athletics will ‘benefit you in several ways. You will have more Vim, Vigor, and Vitality for your academic work’ (Wittle, n.d.). Another report from February 1954 of the Physical Education and Athletics Department argues that athletic participation will even help craft better citizens, since, ‘the belief in the dignity of the individual, the core of our democracy, is a solid part of physical education’ (Physical Education and Athletics Department, 1954, p. 1). Needless to say, the erasure of physically disabled students from these narratives piqued my interest. Why did the administration fail to even acknowledge the possibility of disability in these materials? How did it feel to read these words as a disabled student at Davidson in the 1950s? Although I could find few narratives of disabled individuals from this era, imagining their experiences and this disability history was incredibly valuable for me, as I was claiming my own disability identity through that history. Similarities between queerness and disability allowed Sarah and me to find solidarity in our different experiences. One thing we felt especially connected us was that while many social identities are typically shared in families (like religion or race), queerness defies this pattern. More than likely, queer individuals do not have queer parents, and so to claim a connection with queer people in generations past is to resist the notion of family as purely biological. Sarah and I were inspired by this precedent, and applied a similar concept to disability. Although many of the impairments which people classify as disabilities are genetic, in my case, my condition was not shared by any ancestors in my family. Thus, the archival work of looking into Davidson’s disability past not only gave me access to the difficult history I sought to reclaim, but also helped me to see a powerful linkage between me and my disabled ancestors. 334

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Figure 25.2  T  his document, with our notes from the erasure poetry brainstorming, shows the institutional ableism we aimed to contest.

Responding to how the documents’ focus on perfecting physical bodies erased disabled experiences, Sarah and I sought to erase these documents, using the resulting poetry to cover our art with deeply resonant and contextual meaning. The poetry was spray-painted on each board on top of texture we created by melting wax. We created two poems for the two dorms we worked in. Each poem is split among the floors in the dorm, and so is only completed by viewing each floor in sequence. The physical perfection these documents sought was inevitably also a white male body. Davidson did not begin admitting African-American students until 1964, and female students until 1972, which shows the legacy of compulsory ablebodiedness is also tied to an idealised image of the white male body and student at D ­ avidson (Childers et. al, n.d.). We had reclaimed the space around the elevator by focusing on it as the site of art. We had reclaimed rain by using it to inspire the abstract wax designs. We had reclaimed disabled 335

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Figure 25.3  T  his panel, installed on the first floor of a major dormitory on campus, bends around the elevator button panel and an ID card scanner, which is meant to mirror the way disabled people have to fit spaces not designed for them.

history at Davidson and used archival documents to create poetry which we added to the boards. Now Sarah and I questioned which shapes we would carve the boards into. In the end, we agreed that the shapes of the boards would be shaped to respond to the environment they were mounted in. For example, in one dorm, an elevator panel protruded into the space we would normally use to mount our boards. Rather than asking for the panel to be relocated, we designed the board’s shape to bend around this object, symbolising how disabled people are forced to modify themselves and their bodies to fit in their pre-existing surroundings. The boards are mounted at a low height on the walls, which was also a stylistic choice. Although I do not use a wheelchair, both Sarah and I recognised the wheelchair-using community as an important subset of the physically disabled community. We considered how 336

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frustrating it must be for those who use wheelchairs to engage with art which is typically directed at nondisabled bodies. In a typical art gallery setting, they would likely not be able to read many descriptions and labels easily, and would have to strain their necks to look up at works of art mounted high on walls, just one small example of the many logistical difficulties imposed on disabled people by lack of considerate planning and access. We held an exhibition before the boards were mounted on the wall, to showcase all of them to the community. I noticed how attendees who did not use wheelchairs were forced to bend over to fully appreciate the art, since we had displayed it at a lower level at this event as well. This points to the social construction of disability and how many difficulties that disabled people encounter are created by choices in construction and design. The temporary discomfort that these viewers experienced while trying to view the art is hopefully generative of subconscious empathy for the experiences of physically disabled people, especially those using wheelchairs. Meanwhile, we hoped wheelchair users could experience our art in a powerful and comfortable way. Our choice to mount our works lower when they were eventually installed, so as to prioritise the gaze of a wheelchair user, was a crucial way that we focused our art on its primary audience of disabled people. Throughout the process of creating Rainclamation, Sarah and I drew strength from our friendship. It speaks to the incredibly transformative power of empathy and allyship that our project began when Sarah questioned the status quo. What can we do to change that? Such a radical entry point rooted our installation inevitably in not only an artistic framework, but also a social justice one. The exploration of identity and intersectionality which occurred when I combed through archives and research disability history inspired the activism this work represents. The US political climate around disabled people, exacerbated by Donald Trump’s presidential election, which brought issues of discrimination towards disabled people into the forefront of mass media, motivated us to complete our project as a form of active resistance. Harnish argues that ableism was core to the structure behind Trump’s victory, as well as a part of his rhetoric (Harnish, 2017). We were not the only ones motivated by this event, as a Time news report acknowledges a new wave of activism in disability rights has blossomed in the early years of the Trump administration (Abrams, 2018). Our college’s attempt to silence our political expression pushed us to balance our work between the subversive and the sanctioned. Ultimately, our installation reclaimed the space around an elevator and used art to craft an aesthetically pleasing environment of comfort and power.

References Abrams, A. (2018). ‘Our lives are at stake’: how Donald Trump inadvertently sparked a new disability rights movement. Time, 26 February 2018. Adams, R. (2013). Raising Henry: A Memoir of Motherhood, Disability, and Discovery. Yale: Yale University Press. Barnes, C. and Mercer, G. (2001). The politics of disability and the struggle for change. In L. Barton (ed), Disability, Politics and the Struggle for Change (pp. 11–23). London: David Fulton. Childers, R., Endeley, C., Grimes, C., & Moore, P. (n.d.). Integration at Davidson College. 15 July 2018. Retrieved from http://library.davidson.edu/archives/acs/integration/home_page.htm on 1 August 2018. Cunningham, J. R. (undated). Physical Fitness Manual: Introduction Letter, accessed on 1 August 2018. Davis, L. J. (2015). Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority its Rights. Boston: Beacon Press. Eisenhauer, J. (2007). Just looking and staring back: challenging ableism through disability performance art. Studies in Art Education: A Journal of Issues and Research in Art Education 49(1), 7–22.

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Davenport Erasure Poems. (2014). [Text]. 20 January 2014. Retrieved from https://www.poets.org/poetsorg/ poems on 1 August 2018. Fleischer, D. Z., & Zames, F. (eds). (2012). The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press. Garland-Thomson, R. (2009). Staring: How We Look. Oxford: Oxford University Press. Harnish, A. (2017). Ableism and the Trump phenomenon. Disability & Society 32(3), 423–428. Mulvey, L. (1975). Visual pleasure and narrative cinema, Screen 16(3), 6–18. Physical Education and Athletics Department. (1954). February 1954 Report, accessed on 1 August 2018. Smiraglia, C. (2014). Artworks at work: the impacts of workplace art. Journal of Workplace Learning 26(5), 284–295. Trevisani, F., Casadio, R., Romagnoli, F., Zamagni, M. P., Francesconi, C., Tromellini, A., & ­Bernardi, M. (2010). Art in the hospital: its impact on the feelings and emotional state of patients admitted to an internal medicine unit. The Journal of Alternative and Complementary Medicine 16(8), 853–859. Wittle, A. H. (n.d). Physical Fitness Manual: Letter from Director of Intramural Athletics. Davidson archives. Accessed on 19 September 2018.

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PART VIII

Inclusive pedagogies, evidence and activist practices

26 ZIMBABWEAN DISABILITY ACTIVISM FROM A HIGHER EDUCATION PERCH An uncertain present but exciting future Martin Musengi Introduction Well-meaning interventions for people with disabilities in the education system can have unintended negative effects which hinder rather than enable intended beneficiaries. Often it is difficult for authorities to realise the unintended outcomes of interventions and this suggests that those who implement policies and work directly with people with disabilities should engage in a new kind of activism to remedy the situation. This chapter analyses the rationale and manner in which an academic leads disability activist practices in a Zimbabwean higher education landscape which is largely oblivious of the unintended outcomes of its interventions for people with disabilities. Analysis is grounded on an emerging activist ethos which initially focuses on individual initiatives but is aimed at collectively protesting ableism and rethinking human rights, not only in the restricted higher education area but in a democratic, extended sense in society generally. To this end, the chapter discusses ableism in deaf education in Zimbabwe before analysing emergent activism in higher education institutions. The discussion revolves around leadership initiatives which complement the collective activism of the Deaf 1 community and disabled people’s organisations (DPOs) in general.

Background to ableism in deaf education in Zimbabwe I am a disgruntled oralist teacher of deaf students who has turned to academia to begin a revolution of sign-bilingual education initially in higher education and cascading down to schools for the deaf. With support from a generally enabling constitutional environment, I have facilitated the introduction of undergraduate degrees in sign language: Bachelor of Education (Primary and Secondary – Zimbabwean Sign Language) as well as a fully-fledged Zimbabwean Sign Language (ZSL) module in the existing Bachelor of Education (Special Needs Education) degree programme at one university. This is meant to improve access to education for native users of ZSL. However, the school environments into which graduates from these programmes are supposed to use the language are still labouring under the ableist impression that spoken languages are superior to this signed language. This kind of ableism 341

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has been called ‘audism’ in deaf education. The concept of audism is based on Critical Deaf Theory, which is known as DeafCrit in short and its proponents include Gertz (2008). DeafCrit is a derivative of Critical Disability Studies and it specifically explains the subordination and marginalisation of Deaf people using what Humphries (1977) had originally described as ‘audism’. Humphries (1977, p. 12) described audism as the notion that one is superior based on one’s ability to hear or behave in a manner of one who hears. Ladd (2003) and Baumann and Murray (2010) therefore liken audism to racism and say it is discrimination on the basis of the superiority of being able to use sound-based, spoken language. This kind of discrimination may be evident in education systems which identify a sound-based language as language of teaching, learning and examination to the exclusion of the visual-gestural languages of students who are deaf. Traditionally English, Shona and Ndebele tend to dominate as languages of teaching, learning and examination in Zimbabwe’s education system. The dominance of a few languages in education is despite Zimbabwe’s language-in-­ education policy which celebrates multicultural diversity and advocates multilingual education as buttressed by the Zimbabwe Constitution (2013) which recognises sixteen official languages. This recognition, which includes ZSL, is, according to Kadenge and Mugari (2015), a result of protracted activism by minority ethno-linguistic communities in ­Zimbabwe. Kadenge and Mugari’s (2015) argument that this recognition would be futile without policy formulation and implementation strategies seems to be vindicated by the lack of clear lower level national policy to guide special schools for the deaf on the language of instruction. Director’s Circular Minute Number 2 (2001) simply lists ZSL as one of the subjects that can be taught in primary and secondary schools in Zimbabwe but does not advise how this should be done. Chimedza (2001) attributed the absence of a clear-cut policy to the government’s on-going search for information on which to base such a policy. However, Barcham (1998) argued that conflict and struggle in the policy development of deaf education was rife; between ministry staff, principals, teachers and the Association of the Deaf (ASSOD). ASSOD and of late, the Zimbabwe National Association for the Deaf (­ZIMNAD), lobby government for continued support of ‘special schools’ for the deaf and the use of ZSL in them. Hearing educators on the other hand give a variety of reasons for not using ZSL in education, but as observed by Rudser (1988), the most immediate impediment was the educator’s inability to sign. In the 1980s, in the United States of America (USA), Woodward, Allen, and Schildroth (1988) reported that Deaf people with native-like sign language competence made up less than 20% of teachers in the special schools for the deaf. Similarly, in Zimbabwe less than 10% of the teachers are Deaf (Musengi, 2014), and so implementation of ZSL in education is even more difficult and therefore resisted. While conflict and struggle continue, there is no policy on language of teaching in the schools for the deaf. Each school interprets, in varied ways, the government’s ordinary schools’ policy that a first language be used to learn another in the first three years (Education Act, 1996) and that until the end of primary school (grade seven) schools could choose to continue using this first language as the language of teaching and learning (Education Act, 1996). The dilemma Chiswanda (1997) and Mayer (2009) noted, relates to the schools’ determination of deaf children’s first or preferred language, and thus the language of learning and teaching. Some special schools resort to using English and what Chimedza and Mutasa (2003) called signed English, or pidgin English to teach signs, Shona or Ndebele and the various subjects. Others use English as the medium of instruction from the first day, arguing like Mayer (2009) that these children have no identifiable mother language. They consider that it is better for children to begin learning the language that would be used to teach all the other subjects straight away. Some teachers resort to what they call ‘Total Communication’ which 342

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is variously interpreted to mean either simultaneous use of signs and spoken language or the use of whatever method the individual teacher is capable of. This contrasts with Baker and Knight (1998) who understand ‘Total Communication’ as the use of whatever the individual child needed. Within individual schools there is also a great deal of internal variability in implementing these school-based policies, as many teachers depend on their own capability to decide on language of teaching and learning. The various practices which invariably avoid using sign language are explained by Musengi’s (2016) finding that educators have ‘mythical’ beliefs about ZSL – especially about the superiority of spoken over signed language. This is despite Kadenge and Musengi’s (2018) assertion that ZSL is a real, natural language. Current activism in Zimbabwe therefore centres on trying to address the mismatch between an enabling constitutional environment on one hand and an ableist and audist environment on the other hand. For example, activism involves supporting progressive Deaf people’s organisations such as ASSOD, ZIMNAD and Zimbabwe Deaf Network in fighting retrogressive pieces of legislation. Such legislation includes Section 193 of Zimbabwe’s Criminal Procedure and Evidence Act, Chapter 9:07. According to Musengi (2016), this law allows for the detention of persons who are deaf and mute, if it appears to the court that the accused is unable to properly conduct their defence by reason of deafness or muteness, in the interest of public safety pending a decision by the state President (author’s italics). The reason for detention appears to be inherently discriminatory as deafness or muteness is considered dangerous to public safety. Activism to fight such injustices may appear to be hampered by lack of clear synergies between Deaf people’s organisations and the broader disability movements in Zimbabwe. Deaf people’s organisations focus on identity politics within the socio-­cultural perspective while the broader disability movement tends to focus on rights in a social perspective. This difference may cause a gap that could be exploited by policy makers to ­perpetuate deaf or pathological understanding rather than Deaf or socio-cultural understanding of the condition. To make the distinctions clear, the following sections outline, firstly the medical theoretical grounding of audist, retrogressive legislation and practices. Secondly, it discusses an asset-based, socio-cultural understanding that informs the legislative and policy frameworks in Zimbabwe.

The medical understanding of disability and deafness The individualistic medical approach to disability is rooted in the work of sociologist Talcott Parsons and his discussion of sickness and sickness-related behaviour (Barnes, 1998; Barnes & Mercer, 2005). Parsons is reported to have argued that the ‘normal’ state of being in Western society in the Global North is good health, and therefore sickness and by implication, any impairment is a deviation from ‘normality’. The philosopher Michel Foucault said that medicine dictates what constitutes normal, thereby identifying a whole class of deviant individuals (Feder, 2013). This institutionalisation of the norm, which Foucault called normalisation, indicates the pervasive standards that structure and define social meaning (Feder, 2013). The medical model embodies what Parsons called the ‘sick role’ which is a view of clients as patients exempt from normal social roles as they are not responsible for their condition. In this view people with disabilities are defined as pathological and in need of medical cure. These medical models have progressed and are now found in many international f­rameworks that measure disability and thus also affect how we view what it means to be deaf. For ­example, the ‘International Classification of Impairments, Disabilities and Handicaps’ (ICDH) (WHO, 1980) and now the ‘International Classification of Functioning, Disability and Health’ (ICF) (WHO, 2002) are the WHO frameworks that are internationally used to 343

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measure health and disability at individual and population levels. The ICF classification is also known as a bio-psychosocial model and explains disability as the interactions between a person’s health condition, functioning and then environmental and personal factors (WHO, 2002). Yet, ultimately the ICDH and now ICF model still contain the idea of disability as pathology and deficit. An understanding of the condition of not hearing based on a medical model leads one to believe that the condition is largely characterised by an auditory deficit, which like an illness, is called deafness. Reagan (1995) observed that many believe that deaf people are, at least in a physiological sense, inferior to hearing people. Educators informed by this perspective are likely to pity and patronise people who do not hear whom they view as having a hearing loss or impairment. They will naturally try to remediate the deficits, for example through teaching them articulation skills, speech-reading as well as encourage them to use hearing aids (Reagan, 1995). In addition they might believe deaf people to be socially isolated, intellectually weak, behaviourally impulsive and emotionally immature (Lane, 1999, pp. 35–38). Educators could ascribe such impulsive behaviour to inadequate social training or mental illness, as deaf people are supposed to share the same cultural knowledge, experiences and meanings as hearing people (Siple, 1994). This is a phenomenon which Siple (1994) called an assumption of similarity; hearing service providers steeped in the pathologic model believe that the only difference between deaf and non-deaf people is that deaf people cannot hear. This personal tragedy approach (Oliver, 2009) is characterised by perceptions of the dependence of people with disabilities and stereotypes which evoke pity, fear and patronising attitudes. In Zimbabwean teachers’ colleges and universities, teacher-preparation programmes for teachers of learners who cannot hear are generally grounded on a personal tragedy approach and are aptly called programmes for teachers of pupils with ‘hearing impairment’. Teachers generally have to undergo mainstream teacher-education first before they can undertake this specialisation. The argument is that they have to learn how to teach ‘normal’ pupils before they can learn how to teach those who deviate from the norm. In many training programmes specialisation in the generic ‘Special Needs Education’ area is considered adequate for one to teach students who are deaf, although this contradicts government’s policy ‘Guidelines to Staffing of Special Needs Provision’ which considers this as less than adequate. However, even for those teachers who undertake courses in the hearing impairment specialisation, the focus is medical, that is: anatomy of the ear; physiology of hearing; physics of sound and aural-oral communication methods for teaching deaf learners. At both diploma and degree level, courses involve: ‘Aetiology and Medical Aspects of Hearing Impairment; Curriculum Management, Assessment and Teaching Techniques for Learners with Hearing Impairment; Language, Communication and Assistive Devices’’ (Musengi, 2014, p. 148). The hearing impairment specialist courses generally have an ‘aural-oral’ focus and a deficit-outlook. The term ‘hearing impairment’ is used consistently across diploma and degree programmes because in Zimbabwe, children who are deaf are referred to as ‘hearing impaired’ in official educational policy documents that are in English. The implication is that the learners are in deficit of ‘hearing’ but this is inconsistent with international disability rights, such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD) Article 24 on the right to education that also promotes the right to sign language and ‘linguistic identity’ (United Nations, 2006). In the higher education system, focusing trainee teachers on the ‘needs’ of deaf learners and a ‘psychology’ of deafness suggests deviance from the norm which necessitates a means of remedying these deficiencies as suggested by the remedial programs in the course content. Training teachers to use speaking and listening 344

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exercises focuses on preparing them to remedy what the learners cannot do. This approach is contrasted with a socio-cultural understanding of disability and being Deaf as discussed in the next section.

Socio-cultural understanding of disability and being Deaf The social model is based on the idea that disability is not a result of impairment but a direct consequence of society’s failure to take into account the differing needs of people with disabilities and remove barriers they encounter (Oliver, 2009). Disability is something imposed on people’s impairments through stereotyping, prejudice, discrimination and lack of access. This idea is further developed in Deaf studies so that the socio-cultural model is about viewing Deaf people as a linguistic minority using sign language. This minority is no more in need of a cure than linguistic minorities anywhere in the world. Reagan (1995) explained that in this view, deafness is not understood as a disability involving an inability to function audiologically like people with typical hearing, but it is understood with respect to linguistic, social and cultural issues. He noted that sign language is the key characteristic of membership of Deaf culture. Sign language acts as linguistic mediator because its structures and vocabulary provide the framework within which experience is organised, perceived and understood. This means that concepts as understood by Deaf-signing and hearing-speaking people are based on different norms. Educators who filter their understanding of being deaf through the socio-cultural lens would espouse the view that deaf learners are just like members of a distinct ethnic group. As explained by Reagan (1995) for Deaf learners the appropriate comparison group is not individuals with physical, sensory, cognitive or other disabilities but members of other non-dominant cultural and linguistic groups such as Hispanics in the US. Educators of this mindset are therefore more likely to believe in Deaf students’visual-gestural language and strengths which they would construe as assets. Informed by the socio-cultural model, educators would perceive this condition as Deaf gain rather than hearing loss. Under this perspective, teacher-preparation would recognise sign language as a real language which is used for bilingual or multilingual teaching. Even though general e­ ducation policy in Zimbabwe encourages diversity and multilingualism, none of the teacher-­preparation programmes had taken sign language as a real language until my intervention. Sign language had previously been understood to be an alternative non-vocal c­ ommunication system. The terms ‘alternative’ and ‘communication system’ suggest an artificial system in the tradition of augmentative and alternative communication systems used by those with complex communication needs such as aphasia. In the same vein the term ‘non-vocal’ describes the system in a negative sense, that is, in terms of what it is not rather what it is. This tended to suggest to trainee teachers that ZSL is second best to the more desirable vocal system, something only to be used when the vocal cannot be used. In light of this, student-teachers in the higher education system learnt signed systems such as Signed English, despite lobbying for bilingual education by the Deaf community. Bilingualism or multilingualism suggests a cultural understanding of deafness in which sign language would be treated as a real language, while a spoken language(s) is treated as the other language in a bilingual approach. This presupposes lecturing staff with sufficient competence in sign language to present it to trainee-teachers as a real language in a sign-­ bilingual approach in the institutions of higher learning. The next section discusses how, as a lecturer of Special Needs Education in a higher education institution in Zimbabwe, the author stumbled into activism in deaf education. 345

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Vignette 26.1: Zimbabwe Sign Language as a real language among other real languages Lecturer A: Are you aware that because the new constitution says ZSL is a language and government has, through Presidential proclamation, given our university the mandate to teach all previously marginalised indigenous languages? It is being said that sign language is one of these languages and UNICEF is going to sponsor the training of the teachers? Lecturer B: Yes, I heard about it and also that the Curriculum Studies Department here is trying to hijack all UNICEF-sponsored previously marginalised languages. They argue that they are the department with the mandate to teach languages in the faculty. Lecturer A: Are they forgetting that they do not have the expertise to teach sign language? Doc, we need to act urgently to take sign language into our Special Needs Education Department before it is hijacked. Author (Doc): If we successfully fight them and take it from them, do we have the capacity to teach the language ourselves? Lecturer B: No, we don’t, but at least we know Special Needs Education. Sign language is part of Special Needs Education because we train teachers who teach children who are deaf. Author (Doc): I know, but what would we ourselves do since we do not know enough sign language to teach it to the trainee teachers? Lecturer A: Aaaah, Doc. At least here in the department we know some signs. The language lecturers in the Curriculum Studies Department do not know any. Author (Doc): I do not agree. Sign language is going to be properly housed in Curriculum Studies rather than in Special Needs Education. This is where all the other languages are and so it should be there with the others. Lecturer A: But who would teach ZSL there in Curriculum Studies? They are asking us to do it for them under their department. That is unfair, Doc! Author (Doc): I think I will identify deaf people to teach trainee teachers the language. Lecturer B: Where will you get deaf people who can teach at university level? Can they speak to the students and to us? It will not work. Author (Doc): It is worth trying. If I can get some deaf university graduates to teach the language, I can assist them to get started with the theory and examination.

Emerging academic and activist practices for Deaf Education Vignette 26.1 is an excerpt of a meeting in which members of the Special Needs Education department discussed the where and how of introducing ZSL degree programs for the first time in a university in Zimbabwe. The excerpt captures how it took a change in national constitution and a presidential declaration for teachers to begin to get training in ZSL. Even then, there were serious attempts to ensure that the training would conform to Special Needs Education’s thrust which, as previously discussed, tended to be deficit-oriented. Most of the pioneering 49 trainees also considered themselves part of Special Needs Education when they started. The Deaf community complemented these initiatives by identifying three Deaf individuals with post-graduate qualifications who were then hired as the instructors on the pioneer ZSL programmes. The more than 40 trainee teachers from all over the country have attained 346

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very high levels of mastery of the language over a two-year period. In the degree programs, ZSL has been used as a language of teaching, learning and examination in several of the courses. Ableist, audistic attitudes among members of the faculty have slowly but certainly been changing. Many have interacted closely with the Deaf instructors or the students in teaching and examination sessions. The professionalism of Deaf instructors in the language is no longer questioned and attempts to make the program deficit-oriented have also stopped as more lecturers begin to accept ZSL as a language. These activism initiatives are generally collectively owned by the Deaf community. Challenges do however loom as there is no official ZSL syllabus in the schools where the pioneer group of more than 40 ZSL teachers will be teaching. The government’s position has been that syllabi are crafted centrally at the Curriculum Development Unit. Since this unit does not have an employee with native-like competency this seems to have made it difficult to come up with the required ZSL syllabus. Another challenge relates to government’s intention to send back the graduating teachers to their usual schools. The argument is that these teachers should use their newly acquired knowledge of ZSL to promote inclusive education in their mainstream schools. These challenges require a new kind of activism which takes one beyond the desk of an academic in higher education. Firstly, in collaboration with members of the Deaf community, recommendations have been made that Deaf individuals with appropriate educational qualifications and native-like competence in ZSL take up a position within the unit crafting national syllabi. Resistance to this is passive but appears to revolve around the issue of difficulties in communicating with the rest of the hearing staff in the unit. Ongoing advocacy work in this regard is being spearheaded by Deaf people’s organisations. Secondly, every available opportunity has been used to highlight to government officials that the teachers’ newly acquired ZSL could die naturally if the teachers are not allowed to use the language in special schools for the deaf that Reilly and Reilly (2005) say are institutions with a critical mass of deaf learners. This is because deafness is a low incidence condition and there are unlikely to be deaf children in the teachers’ usual mainstream schools. Navigating the government bureaucracy to put these points across without ruffling feathers appears to be the next frontier in this emerging activism. This frontier also involves instigating the Deaf community to generally dismantle what has been termed ‘audism’. According to Eckert and Rowley (2013) there are three forms of audism that deaf individuals may experience: overt, aversive and covert audism. Overt audism are practices that assume hearing superiority, domination and openly dehumanise deaf people without caring about the consequences of their action. An example of overt audism could be the use of the oral-aural teaching approach for late identified, profoundly deaf children regardless of the weak academic outcomes that result from this perennially. Using a spoken language for teaching such learners is based on the assumption that it is a superior language. The open domination and dehumanisation of deaf people is evident in Musengi’s (2016) finding that some teachers argued that deaf children had to learn and use the spoken majority language in school as they were a minority and their language was not fully developed. This tyranny of the majority appears to be leading to another overtly audist practice called ‘reverse inclusion’. Reverse inclusion is being practiced in two of the three existing residential schools for the deaf. The practice involves co-enrolling some hearing learners into classes with deaf learners at the special schools. The third school for the deaf is also at an advanced stage of preparing to co-enrol hearing learners into their classes with deaf learners. This practice is reportedly meant to provide hearing models for the deaf learners to emulate. It therefore openly pathologises the deaf learners’ condition and is an opportunity to assimilate deaf 347

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learners into the hearing world by providing numerous, readily available hearing models. The hearing assimilationist thrust of reverse inclusion is set to ensure that, in their own special schools, deaf learners will not receive an education that includes their own culture and history because the characteristics of the mainstream hearing group are valued while those of the minority group are devalued. In support, Musengi and Nyangairi (2019) found that inclusive education for deaf learners was being perceived from a pathological model which values speech and hearing. This is despite Mutswanga’s (2017) finding that vision and the use of sign language are critical for successful communication and education. The author has embarked on a campaign of presenting well received papers at workshops and conferences to highlight the irony of devaluing deaf learners’ culture and history in a reverse inclusion model that strives to assimilate them into a hearing norm. Overt audism is also evident in practices that impede deaf students from accessing higher education in certain disciplines without any consequences to the institutions. Deaf students are usually not represented at all in disciplines such as medicine, pharmacy and engineering because of overtly audist policies and practices. Mutswanga and Chataika (2016) found that many deaf individuals who were potential applicants perceived universities as unwilling to admit them. This may relate to deaf students’ options in choosing areas of specialisation being mostly limited to a career in teaching. Most institutions of higher education in Zimbabwe do not have sign language interpreters thereby restricting the participation of deaf students in higher education. The author successfully lobbied management for the employment of a ZSL interpreter in a programme that had two Deaf students at his university. The programme now employs three Deaf part-time lecturers with native-like expertise that they use to teach ZSL courses to hearing student teachers, along the same lines that English, Shona, Ndebele and other languages are taught. Aversive audism are practices that, ‘concern a principle of equality accompanied by contradictions and high levels of anxiety when around Deaf people’ (Eckert & Rowley, 2013, p. 109). An example can be institutional practices that exclude Deaf native users of ZSL from occupying positions that require expertise in the language on the grounds that hearing colleagues who do not know ZSL would have difficulty communicating with a Deaf workmate. In principle, the institution affirms the need for the expertise of Deaf people in their ­v isual-gestural, sign language but there is a contradiction in trying to implement this. Hearing colleagues who must help to implement the principle are apprehensive about being around Deaf people. The academics’ initial concerns about hiring Deaf lecturers as illustrated in Vignette 1 may be an example of the high levels of anxiety that some hearing people have when they imagine being around a Deaf person as a fellow lecturer. Aversive audism practices that impact negatively on deaf learners start before school and emanate from an aversion towards people with disabilities in general. This is evident in the disability-related language that people use. For example, Chiswanda (1997) pointed out that in Zimbabwe many people view deafness primarily as a lack of speech, rather than a direct hearing problem. She stated that Shona terms used to refer to deaf people include chimumumu or mbeveve (the silent) and chiurinzeve or matsi (with defective ears) (Chiswanda, 1997). As earlier indicated, Lane (1999) found that at a global level, deaf people were generally characterised as immature, childish and impulsive by hearing people. Such characterisation leads to aversion so that teachers and other hearing interlocutors become apprehensive around Deaf people. They may also believe that deaf learners are not meant for college and university education (Musengi, 2014) but can be trained to do crafts such as carpentry or tailoring (­Chitiyo & Wheeler, 2004; Chimedza, 2008). Hence, deaf learners are disadvantaged early by being impeded from having equitable access to education and employment. 348

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In Zimbabwe, the very few deaf students who accessed higher education are late-deafened individuals who undertook humanities degree programmes and have largely become teachers. Mutswanga and Chataika (2016) found that most of them struggled to complete their degree programmes because of lack of support and accommodations from the universities. Covert audism are practices that are hidden, more difficult to identify and may be accompanied by a justification (Eckert & Rowley, 2013, p. 109). An example of covert audism would be policies and practices that insist on maintaining the structure of the written language when ‘interpreting’ examinations into ZSL. Government policies have mandated various accommodations to enable deaf candidates to access assessments through the provision of extra time, sign interpretations, speech-reading and finger-spelling, as well as modification of syntax and vocabulary among others. A policy document, ‘Special Education arrangements for learners with Disabilities and other Special Needs’ (Secretary for Education, 2007) outlined various arrangements to enable these accommodations. In order to enable access to examination questions, the policy stipulated: ‘Modifications can be made to general vocabulary and syntax by approved teachers of the deaf well in advance of the examination date. Such modifications may not be done to vocabulary specific to the subject’ (Secretary for Education, 2007, p. 3). The policy also allowed the principal to ask for the signing of questions to candidates who were normally taught through signing if access to questions was not possible through other means. Deaf candidates are however not allowed to sign their responses to the examination items. Modifications mandated by the same policy circular for signed examinations were that the principal should provide for sign language interpreters to sign examination instructions or questions to Deaf learners in each paper. The efficacy of signing general words and phrases while retaining key words of the written language has, however, been strongly contested ( Johnson et al., 1989; Power, Hyde, & Leigh, 2008). The policy position advocating the signing of general words and phrases while maintaining the key words of the written language also appeared to contradict in principle, another provision in the same policy which allowed the modification of syntax. Modification of syntax shows acceptance of the principle that the examination is being interpreted into another language: ZSL. This principle was contradicted by the policy’s stipulation that subject-specific vocabulary from the written language must be maintained and not modified. As changes in general and subject-specific vocabulary are a necessary part of any real interpretation from one language to another, the policy’s outlawing of modifications to subject-specific vocabulary is inconsistent with the basic principles of interpretation. The policy therefore has internal inconsistency as it is based on two incompatible philosophies. On one hand, it allowed signing and changes to syntax, both of which are concessions based on a philosophy of the acceptance of human diversity hence interpretation into a more accessible language. On the other hand, the policy outlawed changes to subject-specific vocabulary and candidates’ signed responses to examination questions, which are stipulations that could be viewed as based on a philosophy that places a higher value on sound-based, written languages over signed ones in what could be perceived as covert audism. These contradictions may be based on fears of diluting the essence of the subject under examination but covertly, they are based on not recognising ZSL as a real language capable of being used to examine academic subjects. The internal contradictions to the policy might defeat the purpose of enabling access to the examination and the policy’s choice of the word ‘modifications’ instead of ‘interpretation’ or ‘translation’ in reference to the written language is a telling example of the hidden bias towards sound-based language. A second example of covert audism relates to the widespread practice called Total Communication. While the conflict and struggle regarding appropriate language of instruction 349

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continue, as alluded to earlier, some teachers resort to what they call ‘Total Communication’. The local interpretation of ‘Total Communication’ as simultaneous use of signs and spoken language has been decried by Johnson et al. (1989), who labelled it ‘crypto-oralism.’ They labelled it hidden oralism because they found that the use of the spoken language would invariably dominate in simultaneous use while the signed message was mostly disjointed and incoherent. A third example of covert audism relates to institutions of higher education generally which do not provide deaf students with accommodations in all education and ­university-related events attended by their hearing peers. Many deaf students attending higher education therefore have to challenge the non-provision of accommodations and individually negotiate the provision of sign language interpreters, note-takers and extended testing time. There are no clear policies and guidelines to enforce accommodations and modifications needed for students who are deaf as they are all considered to be culturally-hearing.

Disability activism Discriminatory practices are not restricted to deafness but to various forms of disability as well. An example of inconsiderate discrimination was during the belated 2017 celebration of International day of Persons with Disabilities which was held at Caledonia just outside Harare on 26 March 2018. After the keynote address at this event, a handful of crutches, wheelchairs and some goodies were presented as gifts to persons with disabilities. This may have suggested to the audience that physical impairment was the only disability worth commemorating. Organising this huge national event reportedly cost US$66,000 while the total value of the donations to persons with disabilities was pegged at a paltry US$3,000 (Daily News, 2018). Most people attending the event were not disabled and when lunch was served at the end of the official speeches, persons with disabilities did not stand a chance in the stampede that occurred. In any case many persons with disabilities had stayed away as they could not access the venue which was off the main roads in bumpy terrain. The official speeches were also a site for struggle between persons with disabilities and their supposed service providers. The executive director of the National Association of Societies for the Care of the Handicapped (NASCOH) prepared a speech that the organisers reportedly considered too radical for the audience. Instead of the NASCOH speech, government officials and ‘politically correct’ successful individuals with physical disabilities presented speeches. The government speeches predictably dwelt on how local legislation and policies for persons with disabilities exceeded anything done in most parts of Africa so far. The audience was promised the eminent appointment of a director for disability issues, some 17 years after this post was promulgated in legislation! To the government’s credit, the post has since been advertised and may soon be filled (at the time of writing, the post had not yet been filled). One ­politically-correct individual with a physical disability who is the chief executive officer (CEO) of a successful international enterprise lambasted persons with disabilities who took it for granted that government and society owed them. Drawing from his own life-story, he noted that he had successfully challenged many so-called able-bodied people in his line of work and that his success had resulted from the hard work instilled in him from a family with a strong work ethic. The author first heard about the chaos at the commemorative event through a social media group of Deaf individuals but later read about it in the private press. As someone who was present at the event, the author heard the speeches first-hand, but it took the social media to become alerted about the full extent of the discrimination going on. This shows how persons with disabilities themselves fought back by publicising the negative side of the event through 350

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social media and ensured that it got into the mainstream media. Persons with disabilities have realised that without adequate publicity, they will continue to be marginalised and oppressed through pseudo charity work. Friends and activists alike disseminated the news into various social media groups instantly and almost in real time, the world knew about their marginalisation at an event that was supposed to celebrate their lives. Persons with disabilities themselves are also the ones who passed on information through social media on the NASCOH director’s speech which was denied space at this event. In his speech, the director observed that this commemorative event was being held for the first time in four years and that in the years when it had not been held, excuses about lack of resources were always given by government even though the same government commemorated ‘wildlife day’ annually without fail. He then proceeded to outline five key priority areas he felt needed urgent government intervention in order to improve the lot of persons with disabilities. These are: poverty eradication, the need for self- representation, provision of free education, the need for a national disability policy and plan of action as well as the need to domesticate the UNCRPD. Despite being banned at International Day of People with Disabilities, the NASCOH speech was soon being circulated on social media by persons with disabilities and their friends. A kind of ‘ripple activism’ seemed to be in action as concerned individuals passed on the speech from one social media group to another until quite a number of people knew its contents. Such rapid dissemination of information is resulting in a more informed public which is aware of disability rights and which can therefore turn more readily to litigation. Using the available legislation, persons with disabilities have embarked on a series of litigations to demand their rights from service providers. One such court case relates to the advertisement that was alluded to earlier, on the appointment of a director responsible for disability issues. A disabled person has engaged a law firm to challenge the advertisement, which is deemed as discriminating persons with disabilities and therefore should be withdrawn and properly re-advertised. The case rests on three arguments. Firstly, the requirement for applicants to have been substantive Deputy Directors for at least two years is being challenged on the basis that it illegally discriminates against the majority of potential applicants with disabilities as only two of them hold such high government posts. Secondly, the case is being made that instead of encouraging persons with disabilities to apply, the advertisement only encourages female applicants. Thirdly, it is being argued that the job description of the director is limited to the welfare and rehabilitation of persons with disabilities, instead of dealing with the advancement of their rights. Another court case relates to the (then) imminent violation of voters with visual impairments right to vote in secret in the 2018 general election. An advocate with a visual impairment argued that the ­Zimbabwe Electoral Commission (ZEC) can and should provide tactile voting devices and allow those who want to be assisted to select their own assistants rather being provided with state assistants. At the time of writing, the ZEC case had been lost on a technicality but, happily, in the court of public opinion it was won because it was followed and supported widely on various social media groups.

Conclusion The purpose of this chapter was to analyse the rationale and manner in which an academic engages in disability activist practices in Zimbabwe. Analysis was grounded on an emerging activist ethos which focuses on protesting ableism and rethinking human rights, by extending lecturer professionalism from narrow teaching and research activities to broader, 351

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community engagement. As an academic, the author has a broad understanding of academia and this encompasses disability activism. With the active support of organisations of people with disabilities, current activism centres on unburdening service providers who still labour under audist and other discriminatory practices. The ‘academic activist’ utilises social media for sustainable advocacy which is the desired ‘new normal’ in disability activism. The chapter has argued that disability activism in the realm of academia is an evolving concept which has much promise for a successful revolution.

Note 1 This chapter follows the convention established by Woodward (1972) and followed by other authors (Ladd, 2003; Parasnis, 1998) whereby the capitalised form ‘Deaf ’ is used to refer to those deaf people who share a Sign Language and cultural values that are distinct from hearing society. The lowercase ‘deaf ’ is used to refer to the audiological condition of deafness and this chapter recognises this latter term as encompassing children to whom Deaf culture is a birth right by virtue of having been born deaf or having become deaf in childhood as they may not yet have decided to become members of the Deaf culture.

References Baker, R., & Knight, P. (1998). Total Communication – current policy and practice. In S. Gregory, P. Knight, W. McCracken, S. Powers, & L. Watson (eds), Issues in Deaf Education (pp. 215–224). London: David Fulton. Barcham, L. (1998). The international dimension. In S. Gregory, P. Knight, W. McCracken, S. ­Powers, & L. Watson (eds), Issues in Deaf Education (pp. 245–254). London: David Fulton Publishers. Barnes, C. (1998). The social model of disability: a sociological phenomenon ignored by sociologists? In T. Shakespeare (ed), Disability Reader: Social Science Perspectives (pp. 53–64). London: Continuum. Barnes, C., & Mercer, G. (2005). The Social Model of Disability: Europe and the Majority. Leeds: Disability Press. Baumann, H. D. L., & Murray, J. J. (2010). Deaf Studies in the 21st century: deaf gain and the future of human diversity. In M. Marschark & P. Spencer (eds), The Oxford Handbook of Deaf Studies, Language and Education (Vol. 2, pp. 210–225). Oxford: Oxford University Press. Chimedza, R. (2001). The context of Deaf Education. In R. Chimedza & S. Peters (eds), Disability and Special Needs Education in an African Context. Harare: College Press. Chimedza, R. (2008). Disability and inclusive education in Zimbabwe. In L. Barton & F. Armstrong (eds), Policy, Experience and Change: Cross Cultural Reflections on Inclusive Education (pp. 123–132). London: Springer. Chimedza, R., & Mutasa, J. (2003). Some Developmental, Cultural and Linguistic Aspects of Deafness. Harare: Zimbabwe Open University. Chiswanda, M. V. (1997). Hearing Mothers and their Deaf Children in Zimbabwe: Mediated Learning Experiences. PhD: University of Oslo. Chitiyo, M., & Wheeler, J. (2004). The development of special education services in Zimbabwe. International Journal of Special Education 19, 46–52. Daily News. (2018). Belated International Day of Persons with Disabilities Celebration, Daily News, p. 3, 14 March 2018. Retrieved from https://www.dailynews.co.zw on 30 November 2018. Director. (2001). Director’s Circular Minute Number 2 – Subjects to be Taught in Schools. Harare: Ministry of Education. Eckert, R. C., & Rowley, A. J. (2013). A theory and practice of audiocentric practice. Humanity and Society 37(2), 101–131. Education Act. (1996). Education Act. Harare: Government of Zimbabwe. Feder, E. K. (2013). Power/knowledge. In D. Taylor (ed), Michel Foucault: Key Concepts (pp. 55–70). Durham, UK: Acumen. Gertz, G. (2008). Dysconscious Audism: A theoretical proposition. In H. D. L. Baumann (ed), Open Your Eyes: Deaf Studies Talking. Minneapolis: University of Minnesota Press.

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Zimbabwean higher education activism Humphries, T. (1977). Communicating Across Cultures (Deaf/Hearing) and Language Learning. Unpublished PhD Dissertation. Union Graduate School, Cincinnati, Ohio. Johnson, R., Liddell, S., & Erting, C. (1989). Unlocking the Curriculum: Principles for Achieving Access in Deaf Education. Washington, DC: Gallaudet University. Kadenge, M., & Musengi, M. (2018). Zimbabwean Sign Language. In T. Kamusella & F. Ndhlovu (eds), The Social and Political History of Southern Africa’s Languages (pp. 339–346). London: Palgrave Macmillan. Kadenge, M., & Mugari, V. (2015). The current politics of African languages in Zimbabwe. Per Linguam: A Journal for Language Learning 31(2), 21–34. Ladd, P. (2003). Understanding Deaf Culture: In Search of Deafhood. Clevedon: Multilingual Matters. Lane, H. (1999). The Mask of Benevolence: Disabling the Deaf Community. New York: Knopf. Mayer, C. (2009). Issues in second language literacy education with learners who are Deaf. International Journal of Bilingual Education and Bilingualism 12(3), 1–11. Musengi, M. (2016). Teachers’ Sign Language beliefs and their influence on Zimbabwean ­curriculum-in-practice for deaf learners. Dzimbahwe Journal of Multidisciplinary Research 1(1), 51–63. Musengi, M. (2014). The experience of teaching in residential schools for the deaf in Zimbabwe. [Unpublished PhD Thesis.] Centre for Deaf Studies, Wits School of Education, University of the Witwatersrand. Johannesburg, South Africa. Musengi, M., & Nyangairi, B. (2019). Educating deaf children in mainstream and special secondary school settings: inclusive mirage or reality? In T. Chataika (ed), The Routledge Handbook of Disability in Southern Africa (pp. 119–130). London: Routledge. Mutswanga, P. (2017). The hands with eyes and nose in the palm: As effective communication alternatives for profoundly deaf people in Zimbabwe. Journal of Education and Practice 8(9), 103–114. Mutswanga, P., & Chataika, T. (2016). Personal experiences of hearing impaired people in higher education in Zimbabwe. Zimbabwe Journal of Educational Research 28(2), 124–144. Oliver, M. (2009). Understanding Disability: From Theory to Practice. New York: Palgrave Macmillan. Parasnis, I. (1998). Cultural and Language Diversity and the Deaf Experience. Cambridge: Cambridge University Press. Power, D., Hyde, M., & Leigh, G. (2008). Learning English from signed English: an impossible task? American Annals of the Deaf 153(1), 37–49. Reagan, T. (1995). A sociocultural understanding of deafness: American Sign Language and the culture of deaf people. International Journal of Intercultural Relations 19(2), 239–251. Reilly, C., & Reilly, N. (2005). The Rising of the Lotus Flower: Self-education by Deaf Children in Thai Boarding Schools. Washington, DC: Gallaudet University Press. Rudser, S. F. (1988). Sign language instruction and its implications for the deaf. In M. Strong (ed), Language Learning and Deafness (pp. 99–112). Cambridge: Cambridge University Press. Secretary for Education. (2007). Special Examination Arrangements for Learners with Disabilities and other Special Needs. Harare: Ministry of Education. Siple, L. A. (1994). Cultural patterns of deaf people. International Journal of Intercultural Relations 18(3), 345–367. United Nations. (2006). Convention on the Rights of Persons with Disabilities and Optional Protocol. New York: United Nations. WHO. (1980). The International Classification of Impairments, Disabilities and Handicaps (ICIDH). Geneva: World Health Organisation. WHO. (2002). International Classification of Functioning, Disability and Health. Geneva: World Health Organisation. Woodward, J. (1972). How you Gonna get to Heaven if you can’t Talk with Jesus: On Depathologising Deafness. Silver Spring, MD: T.J. Publishers. Woodward, J., Allen, T., & Schildroth, A. (1988). Linguistic and cultural role models for hearing-­ impaired children in elementary school programs. In M. Strong (ed), Language Learning and Deafness. Cambridge: Cambridge University Press. Zimbabwe Constitution. (2013). Constitution of Zimbabwe. Harare: Government of Zimbabwe.

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27 RESEARCH AS ACTIVISM? Perspectives of people labelled/with intellectual and developmental disabilities engaged in inclusive research and knowledge co-production Ann Fudge Schormans, Heather Allan, Donavon O’Neil Allen, Christine Austin, Kareem Elbard, Kevin John Head, Tyler Henderson, Karrissa Horan-LaRoche, Rainbow Hunt, Nathan Gray, Rex Marchi, Donna McCormick, Romeo Dontae Tresean Biggz Pierre and Sean Rowley

Introduction I want people to be so kind, be kind, and ‘gentle hands’, you have to be so gentle, teach people to be gentle, to help other people… we have to help people. (Kevin) As a political, rights-based practice, inclusive research and knowledge co-production actively involves people labelled/with intellectual and developmental disabilities1 in research about issues affecting their lives (Bigby et al., 2014a; Frankena et al., 2018). Emerging from the disability movement’s demand for ‘nothing about us without us’ (Charlton, 1998), it respects and values the knowledge and experience people labelled/with intellectual and developmental disabilities bring to research. It also works to bring about more equitable sharing of control over the research process (Nind, 2008) and to challenge discourses that silence and belittle labelled persons as non-knowers (Fudge Schormans & Chambon, 2012). Critiques and questions persist, for example, as to who typically is or is not included in inclusive research, the participation of people labelled/with intellectual and developmental disabilities in data analysis and the reporting of results, and how well power is or is not shared. Nonetheless, this approach has been actively taken up in some parts of the world, for example, Australia, New Zealand, Nordic countries and the Republic of Ireland (Strnadová & Walmsley, 2018), and has growing support in others (Stack & McDonald, 2014). Linked to emancipatory and action research methodologies that view social change as a necessary outcome of research (­Stevenson, 2010; Strnadová & Walmsley, 2018), it may also be understood as disability activism. Limited attention has been paid to how people labelled/with intellectual and developmental disabilities understand and experience inclusive research (Frankena et al.,

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2019). Even less is known about their perspectives of inclusive research as disability activism: •

• •

What do people labelled/with intellectual and developmental disabilities regard as the strengths and challenges, the limits and possibilities for inclusive research as disability activism? What do they understand their rights and responsibilities to be in this type of activism? Facing decreasing agency support for self-advocacy, what do they believe is needed for such activism to be more effective?

As people engaged in several inclusive research projects, we understand that we are, in some way, counting on the potential of inclusive research – as an activist effort – to effect change. What Kevin is speaking to in the quotation opening this chapter, is that the labels ‘intellectual and developmental disability’ remain highly stigmatising, with significant consequences for people so labelled. For many labelled people, rampant dis/ableism means that life can be difficult. In Canada, social exclusion, poverty and employment discrimination (Bizier et al., 2015), systemic violence and high rates of (re)victimisation (Perreault, 2015), significant health disparities and gaps in healthcare (Selick et al., 2018), barriers to appropriate and good quality education programs, high rates of bullying and lower levels of education attainment (Bizier et al., 2015; Community Living Ontario, 2018) make plain that putting a stop to it has been far from easy. In this chapter, we draw upon a series of conversations among people labelled/with intellectual and developmental disabilities, with experience as co-­researchers, from five inclusive research projects in Toronto, Canada, and an academic researcher involved in these projects; attending to the struggles and potential of inclusive research as activism, as a way of moving forward.

Beginning the conversation… In January 2017, members of several inclusive project-based co-researcher groups2 met at McMaster University (Hamilton, Canada). Many of the co-researchers also identify as self-advocates. The purpose of this gathering was to bring together people labelled/with intellectual and developmental disabilities with experience of working as co-researchers in inclusive projects, with members of a fledgling self-advocacy movement in Hamilton – a small group of self-advocates and representatives of supportive service organisations. ­Several social work students and faculty from the university also participated. We spent the day sharing work that co-researchers with disabilities had been involved in and learning about ­self-­advocacy efforts and challenges in Hamilton. We talked about pressing issues and concerns, and ways to collaboratively support greater attention to inclusive projects and the growth of self-advocacy in Hamilton. The co-researchers present at the meeting had been or were currently engaged as co-­researchers in inclusive research projects in which Ann (an academic researcher) was involved. Some also had previous experience in other academic or community-based collaborative projects. As has been reported for inclusive research more generally (Bigby et al., 2014b), across all of these, co-researchers with disabilities had varying and fluid degrees of ­involvement, responsibility, and control over each project. This allowed for a range of ­perspectives, concerns and ideas to inform a fruitful and lively discussion. Evident throughout was an emphasis on the necessity for change, and on what each of us present might

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do, individually, collectively and collaboratively, to make that change happen. Importance was given to questions of voice, rights and control. It was decided that any activity moving forward (research or otherwise) must maintain these three priorities. While not explicitly named as ‘disability activism’, the language of activism was clearly woven through the discussion because people used words such as action, change, fix, power, and empower. The meeting closed with lighthearted, though not insincere, talk of the need for a revolution.

Deciding how to write together The decision to write about inclusive research as disability activism was prompted by the call for chapter proposals for this volume. Increasingly, researchers are being asked to provide detailed and clear descriptions of the processes of inclusive research, of the roles, responsibilities and tasks undertaken by co-researchers with disabilities (Frankena et al., 2019). When non-­ labelled researchers write with labelled co-researchers those processes too must be made plain. While writing processes may vary, such accounts must be honest ones so as not to objectify or disrespect co-researchers (Bigby & Frawley, 2010; Strnadová & Walmsley, 2018). Debates exist as to whether and how labelled co-researchers might co-author research reports, particularly academic publications (McClimens, 2004). This chapter is understood by all of us to have been co-authored. What was written came from our many conversations over the last year. As a co-production, it is a representation of our knowledges, experiences, and ideas. It is the result of a writing project, not a research project, and demonstrates the co-researchers’ desire to participate in ‘imaginings about the society in which they live and to share those with a broader audience’ (Bain & Payne, 2016, p. 331). Defying disabling discourse that would exclude them from traditional forms of academic knowledge production, it is understood as a form of activism: it is about asserting their right to join in the larger debates about ‘intellectual disability’ and people so labelled (Fudge Schormans & Chambon, 2012; White & Morgan, 2012). In this kind of collaboration, academic researchers and co-researchers, ‘have both shared and distinct purposes which are given similar attention and make contributions that are equally valued’ (Bigby et al., 2014a, p. 8). To write this chapter, Ann took the lead, inviting people who had or currently were working with her as co-researchers to collaborate. Not everyone she approached wanted to be involved, others were not able to (for reasons of time or service agency support). Ann met with people one-to-one or in small groups, joining in the conversations and pulling in relevant ideas and questions from her own knowledge and experiences of inclusive research. Conversations were audio-­recorded by Ann, who worked with these recordings to create a first draft. Depending on individual choices, computer access, and literacy, Ann emailed co-researchers the draft or met with them to read it to them and/or share the key points being made in plain language. She spoke with each of the co-­ researchers to get their feedback. After revising the draft into a final version for submission, she again shared it with those co-researchers wishing to review it. To get our messages out to different audiences, we have written two versions of this chapter. To write this academic version, we talked about how to make the voices of co-researchers evident in the writing, choosing to use italics to show when co-researchers are speaking – individually or as a group. When what is being discussed is something everyone agreed on, the terms ‘we’ and ‘our’ are used (Walmsley & CEPF, 2014). Co-researchers wanted Ann to use their own words when they made a really strong point, and to identify the speaker as well.3 Because academic writing is not typically accessible to everyone (­McClimens, 2004), we have also included an Easy Read version that will be posted on The Routledge Handbook of Disability Activism website and made available through other dissemination avenues. 356

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What do we mean by ‘activism’? As co-researchers, we take participation in inclusive research very seriously. We know we have responsibilities to the research, to getting the work done and doing it well. And we have responsibilities to each other. O’Neil said that it is important to be concerned about other researchers, about participants and not just about himself. He said we all ‘need to be a peer-model and set a good example for everyone who is part of the project.’ Being a researcher is a commitment. Kevin says, ‘It is my big huge responsibilities, that’s a big huge responsibilities and actions’. We accept this responsibility because we are doing this work in order to make change, for ourselves and other disabled people. This is what motivates us. Karrissa said that ‘to be a co-researcher and to make a change happen you need to make an investment.’ We know that there are different kinds of participation. People bring different skills and energy. Tyler believes that if disabled ‘people are provided with opportunities then they will do what they have to.’ Our goal is to change things for people labelled/with intellectual and developmental disabilities. We believe that what we do as co-researchers in inclusive research is disability activism. It is about action for change. We talked about what ‘activism’ and being an ‘activist’ means. We came up with many different definitions. Rainbow said that ‘we all have our own definitions of “activism” and our own ways of being “activists”’. It is important to understand this, and not to judge anyone’s definition. Rainbow has been part of the self-advocacy movement, fighting for disability and LGBTQ2* rights for a long time. For her, being an activist means, ‘Becoming a leader towards people in generally, being basically like anyone in the community who stands up for people’s rights, and um, fighting for people’s rights and, you know, people’s choices and their own decisions.’ Romeo has also been a self-advocate and activist for a long time. He says, ‘To be a good activist you have to listen. You have to “be the mouth” for people who aren’t able to self-advocate yet, to get their voices heard… to advocate for yourself and for your rights.’ Here are the key ideas in our definition of activism: • • • • •

taking a stand; speaking up for yourself and for others; using your own knowledge, skills and experiences to let non-disabled people know how people labelled/with intellectual and developmental disabilities are treated; fighting against that treatment; working to make change for all people labelled/with intellectual and developmental disabilities.

Tyler’s definition seems to get straight to what co-researchers are saying: ‘activism is challenging the status quo because it is, can I say this (?), fucked-up’, ‘it is about fighting against inequality.’ Each of the co-researchers had experienced multiple forms of oppression, discrimination, and violence in their lives, and they were angry about this. Kitchin (1998, p. 353) suggests this ‘fighting back’ is about opposing the power of those who would oppress labelled people: it is about resistance. Important to our understanding of activism is that it is a means by which to challenge and resist disabling understandings of intellectual and developmental disability and people so-labelled. Many of the co-researchers feel strongly that activism is an avenue by which to make non-labelled people aware that ‘people with disabilities are people too’ (Heather) and must be accepted as such. Co-researchers are keenly aware that the labels ‘intellectual and developmental disability’ function in particular ways by articulating hurtful and false narratives of (in)ability. They communicate that labelled people are, in Heather’s words, ‘not as ­important or valuable as people that don’t have a disability.’ This continues despite ongoing efforts that challenge these labels as social constructions (Runswick-Cole & Goodley, 2015a). Co-­researchers 357

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pointed to the threats they face when even their status as people, as human beings, is called into question (Stainton, 2001). This highlights for us the critical necessity of disability activism by, with and (in situations where participation in activism can be more difficult) for people labelled/with intellectual and developmental disabilities.

Inclusive research as action research Costa and colleagues (2012, p. 94), ‘stress the importance that resistance struggles have played as vehicles for social change.’ People labelled/with intellectual and developmental disabilities have been calling for their increased participation in research about issues that affect their lives (Frankena et al., 2019). This is often framed as a political issue, a matter of disability and human rights that speaks and acts against their long-standing marginalisation (Stevenson, 2010; Ollerton & Horsfall, 2013). Inclusive research is an umbrella term for a range of research approaches, including participatory, emancipatory or action approaches in which people labelled/with intellectual and developmental disabilities are actively involved in the research (Walmsley, 2001). Walmsley and Johnson’s (2003) framework understands research to be inclusive if it recognises people with disabilities as: (a) Having ownership of research questions; (b) being collaborators; that is, involved in the doing of the work; (c) exercising some control over process and outcomes; (d) being able to access questions, reports and outcomes; and finally (e) that outcomes will further the interests of people with intellectual disability (Bigby & Frawley, 2010, p. 53). The link to emancipatory and action approaches, as well as the goals of research, point to the potential of inclusive research for resistance, for action towards change. Like other ‘action research’ methodologies (e.g., participatory action, community-based participatory, decolonising or user-led research) (Stack & McDonald, 2014; Kara, 2017), inclusive research focuses on empowerment by working towards the democratisation of the practice of research. Having members of marginalized groups assume or share power in research is understood as, ‘a component of social justice’ (Leibenberg, 2018, p. 1). These methods, ‘are devised and embraced by activists as they work to shift the balance of power’ (Kara, 2017, p. 289). Action research is conducted to create knowledge and support community action towards change, for individuals, groups, communities or organisations, or for broader social transformation. Rarely is this straightforward and it is often difficult to determine whether it has been successful in bringing about meaningful change (Boog et al., 2003). Recognising that some people labelled/with intellectual and developmental disabilities may require support to participate in research, inclusive research is practiced in many different ways. Bigby et al. (2014a) identify three main approaches in which they are involved: in an advisory role, as leaders of the research, or as members of a collaborative group. Each approach differs somewhat in terms of the extent to which people with disabilities are included, lead and control the research; the aims of the research; and who benefits the most. In practice, these approaches are not always so clearly defined. More attention is needed to determine how and in what ways these different models work to effect change (Bigby et al., 2014a).

Inclusive research as disability activism We believe that inclusive research is disability activism. We do the work, get the information, take the information and messages to the people who need to hear it – this is how change 358

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happens. Like Tyler says, it is ‘100 percent activism.’ It is a way to educate non-disabled people about intellectual and developmental disabilities. When they learn how to treat disabled people differently it can make a change to disabled people’s lives. Many of the topics the different projects focus on are things non-disabled people don’t know about or that they want to ignore – things like being homeless, not being able to have sexual relationships or become a parent, being excluded and treated badly by people in the community. It sometimes feels like disabled people, the ways we are treated and the challenges we face, are invisible. Inclusive research may make a difference by drawing attention to the experiences of labelled people in these (and other) areas. This further contributes to disability activism when other disabled people learn about the research. Karrissa, for example, spoke about this in the context of her work as a co-researcher on a project looking at homelessness for disabled youth: ‘Homeless disabled youth learn that someone is paying attention, that is positive for them.’ It might encourage youth to get involved and to ‘speak up about their own situation’. For inclusive research to function as disability activism, we believe that, ‘Disabled co-researchers must be part of getting information, the messages “out there”’ (Romeo). Kevin captured a shared sentiment: ‘Telling our stories, yeah, letting people know what happened, our opinions, our opinions’ is necessary to changing what non-labelled people think and how they act. Denied access to academic and other public arenas, however, makes this difficult. Giladi (2018, p. 14) writes that, ‘The failure to properly recognise and afford somebody or a social group the respect they merit is an act of injustice.’ People labelled/with intellectual and developmental disabilities – as a group – have long experienced social devaluation due to assumptions of (in)ability. Epistemic injustice and exclusions follow from being ‘wronged in their “capacity as a knower”’ (Giladi, 2018, p. 142). These ideas formed a backdrop to many of our conversations, for example, that their opinions are not always sought, that they are not always listened to, and that others often have too much decision-making power over their lives, speaks to co-researchers’ experiences and awareness of epistemic injustice. In light of this exclusion, is participation as co-researchers in inclusive research, in and of itself, disability activism? A means by which to assume power and epistemic control? Can it disrupt the public imaginary, ‘shake-up’ common ideas about labelled people? By re-framing people labelled/with ‘intellectual and developmental disabilities’ as ‘researchers’, ‘activists’ and ‘activist researchers’, and ‘co-authors’ can we challenge what all of these labels typically mean as a way to make change? Through participation in inclusive research projects, people labelled/with intellectual and developmental disabilities can (to some extent) re-think and re-make themselves (Fudge Schormans, 2010). All of the co-researchers identify as ‘researchers’, an outcome similarly noted in the literature on inclusive research, and reinforced when others regard them as such (see Ham et al., 2004; Fudge Schormans, 2010; Ollerton & Horsfall, 2013; White & Morgan, 2012; Fudge Schormans, 2015). ‘You [academic researchers] are not just saying we’re researchers, we’re on the research team’ (Christine). This identity has become important to their sense of self, raising their self-esteem and confidence (to varying degrees). Being positioned as a researcher is also understood to create opportunities for them to have a voice, to be seen and heard, and to be recognised by non-labelled people in more positive ways (within and outside of the research project). Nind (2017, p. 351) writes that, ‘Knowledge of life on the ground living with disability is not the exclusive domain of marginalised groups but it is critical in inclusive research contexts.’ Kevin feels audiences are more likely to listen to labelled co-researchers than to non-labelled researchers because they can ‘show people what it’s really like’. In talking about ‘lived experience’ we speak from a critical perspective – we include living with impairment 359

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and living with the social, political, cultural and economic inequities that seem to follow (Costa et al., 2012). When research information is rooted in lived experience and shared by those with that experience, co-researchers believe it has more power. Sean, Donna and Rex suggest that non-labelled audiences respond differently, ‘people get more emotional when we tell the story’. This raises the question of the potential (or supposed) power of authenticity (McClimens, 2004). Some co-researchers (particularly those with more research and self-advocacy experience) credit inclusive research with leading to better and more truthful information which they feel will lead to more useful interventions and policy change. They imagine it is granted more legitimacy by those with power to effect change, however, while many audiences have spoken to us of the power of co-researchers’ work and its impact on their understandings and engagements with disabled people, broader impacts on service provision or policy have been harder to discern. O’Neil and Ann explored whether epistemic exclusion and disabling assumptions of (in) ability might also lead to challenges to the methodological rigour or robustness of the research (a concern noted by Bigby et al., 2014a). O’Neil stated that being positioned as a researcher, ‘changes how others see us, they see us as not disabled or as not so disabled, sort of, less disabled.’ He critically names this a ‘backhanded compliment’ because it is rooted in tenacious disabling assumptions that labelled people ‘can’t do research’, they ‘aren’t this “able”’4. Ann has at times shared the work of different inclusive projects on her own, at academic conferences when funding shortfalls meant co-researchers could not participate. Particularly when speaking at conferences not familiar with critical disability studies, some audience members have challenged its authenticity, expressing doubt that the work was produced by or even with labelled co-researchers, asserting again that they are not ‘able’ to do such work. In our experience, audience responses can be very different when co-researchers lead or participate in presentations, or when they present the work without an academic researcher. (We do not, however, know whether this is because non-labelled people might not feel comfortable challenging co-researchers directly about their ‘ability’.) Like ‘disability’, the labels ‘researcher’, ‘activist’ and ‘activist researcher’ are embedded in very particular ideas of ability and agency. It was our sense that participation in inclusive research, particularly in knowledge sharing, has the potential to disrupt those ideas for some non-labelled people (particularly those outside of disability studies) – in these instances, a researcher labelled/with intellectual and developmental disabilities is not expected. The political act of participation as ‘co-researchers’ then is a form of dissent, a means of contesting dominant discourses of (in)ability (Fudge Schormans & Chambon, 2012), thereby facilitating recognition of co-researchers as ‘researchers’, and thus ‘able’. Co-researchers understood that, for some non-labelled audiences, being confronted with labelled people in these roles can be ‘surprising’. While it may be surprising, is it sufficient for disability activism? ‘Does it demand the attention of the world? Or at least the viewers/readers?’ (Köbsell, 2006, cited in Hodge, 2016, p. 4). Reflecting the critical consciousness-raising and empowerment that can sometimes take place in inclusive research, a point made frequently in our discussions was the potential to trigger ‘real change’ when we ask audiences to critically reflect on whether they are part of the problem. When we ask them to think about whether (and how) they are implicated (intentionally or not) in the oppression and marginalisation of labelled people. The practice of turning the ‘focus onto the behaviours of oppressors’ (Oliver & Barnes, 2012, cited in Durell, 2016, p. 2316), of labelled people holding non-labelled people to account and asking them to hold themselves accountable is thought to be particularly unsettling (Fudge ­Schormans, 2015). 360

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For things to really change for people labelled/with intellectual and developmental disabilities, people who don’t have these labels need to think differently about us. ‘They need to learn about our lives. They need to think about how we are treated.’ Karrissa said it this way: ‘When we put them in an uncomfortable thought, we ask them to think about this uncomfortable thought, to take a look in the mirror and see if they are the ones who need to change.’ It changes things if what people hear feels like a ‘slap in the face’, if it makes them realise that ‘this is what you’ve done’.

Getting the messages out there: dissemination as activism Bigby and Frawley (2010, p. 59) note: ‘[l]ike any other piece of research, [an inclusive research project’s] impact will eventually be determined by how well it is disseminated and the serendipitous way in which it is taken up by those with power and influence.’ As co-researchers note, activism requires an audience. Academic researchers face pressure to disseminate research knowledge using traditional academic forms targeting academic audiences (Darby, 2017). For practical change to happen, co-researchers felt that a lot of people, and the right people (e.g., service providers, professionals, educators, employers, policy makers, the general public – as well as academics), need to see, hear or read about the work. Broader, carefully considered dissemination of the work done in inclusive research projects is critical to activism. As Taylor notes, activism is not limited to direct action, militancy or barricades; it can be effected through diverse ‘terrains, strategies and practices’ (Taylor, 2014, p. 306). Working with Ann on a range of projects,5 co-researchers have engaged in creating and disseminating both traditional and different (more accessible) types of research outputs across a range of spaces. We have reached local, national and international audiences that include family, peers and allies; community groups; professionals (from many disciplines); service providers; the general public; academics and students. Co-researchers have participated in numerous community and academic conference presentations. To a significantly lesser extent, they have participated in developing text-based reports and academic journal articles. Frequently guest lecturing in academic classrooms, they have reached students from a range of disciplines, particularly those in programs preparing students for work in sectors providing services to people with disabilities. Darby (2017) and Taylor (2014) speak to teaching as a strategy for activism when non-academic research collaborators influence what gets taught, and when those teachings disrupt taken-for-granted ideas. Some projects have received local and national media attention, facilitating awareness of co-researchers’ work, issues and messages. Each of these events is understood as another opportunity to raise awareness about issues that matter to co-researchers, and speak against disabling attitudes, policies and practices. Co-researchers insist however that dissemination is most effective when it includes active discussion of the work with audiences, an opinion with some support from the literature (Keen & Todres, 2007). The co-researchers stressed the power of less traditional, arts-based/informed means of knowledge sharing and exchange, practices understood to be more effective at getting people’s attention, at evoking different emotions and/or supporting different kinds of engagement and interaction between co-researchers and audience (Cole & Knowles, 2008). We offer a few examples here. Co-researchers with the My Life in the City project, which used multiple arts-based/­ informed and communication strategies to learn how labelled people make use of city space, made the decision to direct and participate in the creation a documentary as one means of 361

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sharing research findings (see Fudge Schormans et al., 2018). The documentary has been screened at national and international film festivals, community forums, and academic conferences; adopted as a curriculum material in Toronto secondary schools; included in three curated exhibits on accessible cities in Toronto;6 and used in a small number of university courses. A screening at a local service organisation and subsequent conversation between co-researchers and organisation staff, resulted in changes being made to personal care planning for the people they support. While many have seen the documentary (hence, raising awareness), we know little about its impact. Two other projects developed forum theatre scenes (from qualitative transcripts) to share project results. One performance of a scene developed with co-researchers in the Partnering for Change project (exploring the intersection of disability, homelessness, education and employment on the lives of disabled homeless youth), at a national homelessness conference, has played a small role in having homelessness for labelled youth added to the national agenda on youth homelessness. Two forum theatre scenes, about parenting with an intellectual disability, were developed with the Re-imagining Parenting Possibilities project co-researchers, and shown to numerous and variable (albeit targeted) audiences. The interactive nature of forum theatre means that audiences are actively engaged in the performance (see Ignagni & Fudge Schormans, 2016). Audiences have consistently told us this intense engagement with research results and with co-researchers makes a meaningful difference. Similarly, the use of photo-elicitation and photovoice methods in an inclusive project exploring public photographic representations of labelled people (What’s Wrong with this Picture), particularly when combined with conversations directed by co-researchers, have proven disruptive to some non-labelled audiences (see Fudge Schormans, 2010; Fudge Schormans & Chambon, 2012; Fudge Schormans, 2015). We believe that the work can make a difference. We believe this when people tell us that it has affected them. When they say it makes them think twice about their own ideas. When they realise that they haven’t always treated people with disabilities as they should have. When they said they had learned there are different ways to do things and to be with people with disabilities. When they said it made them look at what their organisations are doing and take action to change things. However, it doesn’t always work. We can’t control what people think about the work. Sometimes it is clear that we haven’t changed people’s opinions. Sometimes the people who come to see us already respect people with ­d isabilities – they already think like we do. Sometimes people don’t want to change their minds. Some of us were upset when our staff wouldn’t come to our presentations. We felt angry and disappointed when they wouldn’t let us do presentations at agency meetings. Sometimes we don’t know if it affects people at all. Stevenson (2010, p. 43) writes that ‘[h]aving impairment, being a relative of a person with impairment, or being part of a specialist organisation dealing with disability issues does not necessarily produce activism or advocacy.’ The multiplicity of possible interpretations means it is difficult to get a sense of the effect any of the work might have on other people (­McClimens, 2004; Bigby & Frawley, 2010). While disappointing and frustrating to co-­ researchers, we all recognise that change is slow; it starts with small changes (Garcia Iriarte et al., 2014). Shakespeare (1999) questions the power any research has to significantly change the lives of disabled people, but does suggest that, ‘research can contribute to an environment that makes change possible’ (as cited in Peuravaara, 2015, p. 281). This has appeal to us. We now turn our attention to what we feel would be useful in making this type of disability activism more effective.

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How can inclusive research work better as activism? What do we need to do so that inclusive research will lead to bigger changes? • • • •

Keep at it! Have more inclusive research projects. Get more funding. Find more ways to share our information and speak up about what matters.

Co-researchers identified what was for them the most important task: activism needs to be sustained. A risk of project-based activism is that the momentum built up over the course of the project cannot be maximized. Costa et al. (2012) argue for the necessity of ­m aintaining a focus on resistance, opposition and collective action to accomplish social change. Here we share a few interconnected possibilities for doing so and some of the challenges to achieving these. A necessary task is advocacy efforts directed at funding bodies for budgets that: 1) better reflect the costs associated with inclusive research, including costs for access and support; and 2) allow for more flexible end dates and longer periods of dissemination for broader disability activism. This need for more funding and time is well documented in the literature. For example, Bigby et al. (2014a, p. 9) highlight the ‘volume and scope of resources necessary if it is to be done properly – time, money and commitment of funding bodies, academics and people with intellectual disabilities.’ The authors confirm co-researchers’ experiences that inclusive dissemination practices can be lengthy. Limited time and money can prevent them from participating in ways that matter, to the research, to co-researchers, and to social change (Nind et al., 2017). Securing bigger budgets will however be challenging in the context of austerity and fiscal restraint (Garcia Iriarte et al., 2014) and impact agendas that look for big impacts on policy and practice and devalue the important impacts collaborative research can make (Darby, 2017). Finding ways for co-researchers to carry on the work after a project ends was strongly endorsed. As was the desire for additional research opportunities. Co-researchers talked about the difficulties of securing their agency’s support for their ongoing participation in dissemination once project funding is depleted. They emphasised the long gaps b­ etween ­ aterial projects. Each co-researcher had experienced being paid for their work7 which has m benefits (most rely on disability pensions) and is thus desired. It also lets them assume a ­temporary status as ‘productive’ and ‘employed’ which impacts self-esteem. Whereas ­‘labour has the potential to deconstruct intellectual disability’ (Bates et al., 2017, p. 172), volunteerism, doing the work after the money runs out, risks becoming exploitative. These tensions, not resolved here, have been reported elsewhere (Ham et al., 2004; Stevenson, 2010; ­McDonald et al., 2013). One suggestion was to partner with supportive community organisations who, in joining with co-researchers to do the work of dissemination, could support disability activism. By facilitating networking, organisations could broaden the reach of such activism, possibly leading to other work for co-researchers. By amplifying the voices of co-researchers ‘in ways that are heard’ (Leibenberg, 2018, p. 1), organisations might engage in activism via their access to people with power to effect larger scale change. Co-researchers were cautious: organisations are already stretched, others might not share their values, and finding the right organisations was critical.

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Extending this idea of partnerships, co-researchers talked about connecting with members of other inclusive research or community-based projects. They spoke too of crossing disability lines to join with groups of researchers and activists with different disability labels, as well as people from other marginalised groups. Such alliances were thought to bring more visibility to intellectual and developmental disability, to co-researchers’ concerns, leading to more research, more attention and (hopefully) more change (Harper et al., 2007). Such a collective has potential to, ‘build a mass and a louder voice – to be powerful’ (Karrissa). And it has been exciting to contemplate. Bringing us full circle, making it happen will require time, money, resources and the commitment of many.

Where we are at now… All this is about hope, I hope they take this away from our work. (O’Neil) We have landed where we began, with a (cautiously) hopeful perspective on disability activism that might be accomplished in and through participation in inclusive research. Co-­researchers have pointed to the potential of unexpected dissent, of speaking back and disrupting disabling ideas about people labelled/with intellectual and developmental disabilities. How doing so may lead to re-evaluation and recognition as ‘researcher’ and ‘person’. Runswick-Cole and Goodley (2015b) discuss how, in a neoliberal context, ‘voice’ and ‘participation’ are promised to lead to recognition as an active citizen, and to a better life. They suggest, ‘[d]isabled people with learning disabilities remain invested in these promises’ (p. 168), then go on to express skepticism as to the impacts of such on disabled people’s everyday lives. Drawing on the concept of ‘cruel optimism’ (Berlant, 2006, cited in Runswick-Cole & Goodley, 2015b, p. 165), they note the illusory nature of such promises that work instead to serve neoliberal interests, and current research would seem to bear this out (e.g., Flynn, 2017; McConkey et al., 2018; Power & Bartlett, 2018). In this context, is co-researchers’ belief that participation in inclusive research can effect change just another example of cruel optimism? Or, as co-­researchers suggest, is inclusive research, with its commitments to supporting the participation of people with disabilities and revealing and fighting against disablism, what Runswick-Cole and Goodley name a space for ‘resistance and possibility’ (2015b, p. 174)? While ‘participation’ is serving multiple agendas, many of which harm rather than help, Kesby (2005, p. 2060) suggests it can be used by ordinary people to, ‘achieve the strategic agency necessary to deconstruct, resist, and outflank the most domineering powers…constituting their lives.’ Nathan and Kareem stress that if labelled people are denied opportunities to participate in research ‘that changes people’s minds’, then ‘we won’t get opportunities, communities and organisations won’t change, and our lives won’t change’. A concern expressed by Kesby (2005), and one we too have described, is that the power of this participation, the empowerment of people that can take place within carefully supported and managed projects, is often limited to these spaces. And, as the co-researchers suggest, we need to move beyond these spaces, we need ‘collective action at a wider scale’ (Kesby, 2005, p. 2059). Co-researchers have identified several (ambitious and long-term) ideas for how this might happen in order to realise their goal of a bigger and more powerful mass of people working towards social change for people labelled/with intellectual and developmental disabilities. In addition to the dissemination activities we addressed earlier, co-researchers have been sharing work with the self-advocacy groups they belong to. While positively received, it has not yet led to any new collaborations. This may highlight a question of context. Self-advocacy 364

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movements can both support people labelled/with intellectual disabilities to develop skills and experiences to facilitate participation in inclusive research and help to build the types of networks and alliances co-researchers are asking for (Bigby et al., 2014a). They do, however, require a context that can and will support their development. Self-advocacy is still just emerging in some of the areas we are working. Similarly, inclusive research is not yet as well known or practiced here as it is elsewhere in the world. Nonetheless, working to create connections for collaborations and action is an important goal moving forward, and co-­ researchers believe collaborations such as inclusive research to be particularly useful starting points. ‘We all hold keys to different doors and we need to access all the doors we can to change things’ (Karrissa). Academic and community researchers need to recognise the value of inclusive research and work to support not only the doing of (properly funded) inclusive projects, but to draw on all the doors they can access to support these broader activist initiatives. Rejecting ‘the world we feel to be wrong would begin with a negation through the word “no”. This would be a first step towards changing the world’ ( Jørgensen & Agustin, 2015, cited in Lassen, 2018, p. 7). Employing inclusive research as a means to make their ‘disagreement visible’ (Lassen, 2018, p. 7), co-researchers are occupying spaces of debate, challenging thinking about the possibilities for labelled and non-labelled social relationships and for their everyday lives in the belief that another world is possible (Mouffe, 2006).

Notes 1 In this chapter, we use the terms ‘labelled people’, ‘disabled people’, as well as ‘people labelled/ with intellectual and developmental disabilities’. Acknowledging critique that it risks depoliticising disability and maintains a focus on impairment (Titchkosky, 2001), people-first language – ‘people with intellectual and developmental disabilities’ – is preferred by many self-advocacy groups in Canada, and some of the co-authors of this paper. The more political terms ‘disabled’ and ‘labelled’ people, demonstrate that labels have been imposed and are ‘not always owned by the individual with regard to whom it is used’ (McClelland et al., 2012, p. 809), acknowledging too the harmful consequences of being labelled. 2 Different terms are used to signal the role/participation of people labelled/with intellectual/­ developmental disabilities in research. We choose to use the term ‘co-researcher’. Elsewhere (e.g., Stevenson, 2010), ‘non-disabled researchers’ has been used to refer to academic and community researchers in inclusive projects. This term risks making invisible the experiences of disabled academic or community researchers: we use the terms ‘academic researcher’ and ‘community researcher’. These distinctions clarify researchers’ different roles in the projects and in writing a co-authored paper (Strnadová & Walmsley, 2018). 3 These decisions were made following a number of discussions on the risks and potential impacts of using one’s own name in a publication, as well as alternative strategies (e.g., pseudonyms). 4 For a related discussion on the impact of ethics reviews on inclusive research with people labelled/ with intellectual disabilities, see also Santinele Martino & Fudge Schormans, 2018. 5 For more information on projects mentioned here, please contact Ann Fudge Schormans at [email protected]. 6 At one of the curated exhibits, 6,670 people viewed the documentary over a four-month period. 7 Disabled co-authors received variable types (honorariums, hourly wage) and amounts of payment for their work as co-researchers, dependant upon funding arrangements for each project.

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28 REINVENTING ACTIVISM Evidence-based participatory monitoring as a tool for social change Marcia Rioux, Paula Campos Pinto, Dagnachew Wakene, Rados Keravica and Jose Viera Introduction Adopted in 2006, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) is the outcome of three decades of activism led by the disabled persons’ movement, both at local and global levels (Kanter, 2014; United Nations, 2006). Indeed, the emergence of the movement for the rights of persons with disabilities can be traced back to the 1970s, when in the United Kingdom and North America, a small group of persons with disabilities came together to confront charity-based and medicalised approaches to disability and to claim their equal right to independent living, opportunities, inclusion and social participation (Barnes & Mercer, 2010). In the decades preceding the adoption of the Convention, this group grew larger and became a global movement that was influential in the drafting of the CRPD (Lindqvist, 2011). Twelve years have passed since the adoption of the CRPD, and the world is now facing new challenges. After a global fiscal and economic crisis, neoliberal policies, austerity and public spending cuts seem to be enduring (Farnsworth & Irving, 2015). This is unfortunately creating new challenges for persons with disabilities to make their voices heard and to achieve their rights. Critical questions being raised under such circumstances are therefore: how to promote effective implementation of the rights of persons with disabilities? How to ensure that universal rights remain locally relevant to people with disabilities in both the global North and South? And how to be sure that progressive realisation is a goal of monitoring and action? In this chapter we argue that new forms of activism, that are evidence-based and engage multiple partners, while led and controlled by persons with disabilities are emerging and are effective in shifting the power, knowledge balance and advancement of disability rights. Evidence or results-based monitoring practices have been defined as powerful tools ‘that can help decisionmakers and policymakers track progress and demonstrate the impact of a given project, program or policy’ (Kusek & Rist, 2004, p. 1). In this sense, evidence-based monitoring differs from traditional approaches that emphasise inputs and outputs, by instead placing a greater focus on outcomes and impacts. Integrating qualitative and quantitative data, evidence-based monitoring distinctively acknowledges the relevance of civic engagement in monitoring processes (Fukuda-Parr, Lopes & Malik, 2002). Following the adoption 369

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of the CRPD, countries all over the world have initiated legal and policy reforms; but, the question remaining is how to measure their impact? Are these legal intitiatives really making a difference in identifying and addressing obstacles and barriers? To assess the success or failure of governments in promoting the rights of persons with disabilities, we need more than an appraisal of legal and policy development. We need evidence-based monitoring that addresses the ‘So what?’ questions. We also need to measure the real impact of government actions on persons with disabilities’ everyday lives and the progress or setbacks in implementing their rights on the ground (Rioux, Basser & Jones, 2011). An example of such a participatory and emancipatory evidence-based system to monitor the human rights of persons with disabilities worldwide is the global initiative Disability Rights Promotion International (DRPI). Thus, the DRPI approach places persons with disabilities at the centre of monitoring processes, as knowledge holders, data producers and data analysts, and focuses on assessing outcomes, rather than counting services. There is tremendous power in measuring performance and within the DRPI system, this power remains with persons with disabilities and their representative organisations as it is an important tool for social change. In this chapter, we begin by introducing the DRPI system and describing its methodology and guiding principles. Drawing from over fifty-five international DRPI projects conducted in all five regions of the world and engaging persons with disabilities as researchers and participants in monitoring their rights, we present the People’s Indicators. These are a set of DRPI evidence-based participatory indicators that can be used to provide a strong account of what poverty, exclusion and the denial of rights mean to individuals with disabilities. They provide a way to measure progressive realisation – that is, whether we are seeing change and movement towards the entrenchment of disability rights, recognising that these are not static factors but change with different social, economic and political conditions. The chapter closes with success stories of activism that ensure the implementation of DRPI projects in various regions of the world. We argue that participatory and emancipatory monitoring strategies can become a basis for reinventing activism and a way forward to achieve social change.

What is the DRPI project? Disability Rights Promotion International (DRPI) is a collaborative project working to establish a holistic, participatory system to monitor the human rights of persons with disabilities worldwide against the standards of the CRPD and other international human rights instruments.1 It is based on the assumption found in much human rights work that to implement rights, a key criteria has to be the engagement of those who are most impacted, women in the case of women’s rights, indigeneous people, LGBTQ populations, people living in poverty and other marginalised populations. DRPI was founded in collaboration of an international Advisory Committee and Co-­ Directors Bengt Lindqvist (former United Nations rapporteur on disability, who recently passed away) and Marcia Rioux. The project was developed to meet the pressing need for a global system to monitor the human rights situation of persons with disabilities. Since its launch in 2002, the DRPI team has worked to find ways of hearing the voices and articulating the lived experiences of discrimination against persons with disabilities through which they themselves express their concerns, aspirations and needs. The DRPI methodology, which has been developed and field-tested over the past twelve years in more than fifty-five countries worldwide (the large majority of them in the global South) seeks to establish a sustainable monitoring system that addresses disability-based discrimination throughout the world. DRPI’s distinctive approach is based upon the following features. 370

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Central role by persons with disabilities and their organisations in monitoring DRPI monitoring is exclusively led by persons with disabilities. Thus, persons with disabilities and their representative organisations play leading roles in the governance and implementation of monitoring initiatives. For DRPI monitoring purposes, the perspective of persons with disabilities determines which rights remain illusive and which rights and principles are realised in their everyday lives. Giving a central role and voice to persons with disabilities in rights monitoring, ensures that a focus on local realities is maintained. Hence, the approach requires data collection processes that engage persons with disabilities at its core, as researchers, monitors and participants.

Cross-impairment involvement DRPI works with persons with all types of impairments, based on the recognition that there are common violations of human rights independent of the type of impairment.

Capacity-building and sustainability in the field of monitoring Through building capacity to collect and report on information, DRPI ensures that a holistic view of the human rights situation of persons with disabilities is undertaken and that measures taken by disability organisations, governments and other actors to improve this situation, are fully informed. DRPI aims to create sustainable networks of individuals and organisations that will continue to call attention to disability rights in their communities beyond the life of an individual project.

Incorporating human rights principles when assessing rights Viewing disability as a human rights issue starts with the central premise that persons with disabilities are individual holders of rights, not objects of charity. As such, persons with disabilities are entitled to enjoy the same rights and freedoms as all other people. The human rights perspective of DRPI is further informed by an understanding of the structural barriers that historically have created social and economic disadvantages for persons with disabilities in all societies. In this sense, DRPI recognises international human rights treaties and national human rights laws. These include important principles of equality and non-­ discrimination that can be used to promote and protect the rights of persons with disabilities globally. They further highlight the responsibility of governments to ensure that all citizens equally enjoy their rights and freedoms and can participate fully in society. Therefore, in overcoming traditional perspectives of rights seeking groups that view them as opposed and mutually exclusive, DRPI embraces both individual and collective notions of rights and stresses linkages between the individual and the collective, the personal and the political.

Building results into evidence-based monitoring reports Evidence-based DRPI monitoring is grounded in the understanding that thorough and accurate data will reveal the extent of discrimination faced by persons with disabilities on a daily basis. Persons with disabilities themselves bring life and vitality to the rights, which are most relevant to their lives. These rights vary according to the place and context. There is no assumption that delineation of rights is a fixed and unmoveable – deemed to be so by experts 371

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rather than assuming that the experts are those with disaibliites themselves. Data is recognised as crucial for advocacy activities and will provide documentation for governments to develop policy and plans that result in sectorial and societal inclusion of persons with disabilities. In addition, monitoring reports are a solid basis for shadow/alternative reports to the CRPD Committee, regional human rights mechanisms and for disability advocacy.

Integrating distinct types of monitoring rather than a monolithic approach DRPI uses a holistic approach to monitoring disability rights, focusing on fact-finding in three key areas: (i) the individual experience of persons with disabilities; (ii) the systemic measures taken to protect and promote disability rights (laws, policies, programmes); and (iii) the societal attitudes toward disability (measured through media coverage of disability). When each of these three key areas are intertwined, they provide a more complete picture of disability discrimination. The aim of the monitoring work developed by DRPI is not to count how many services are available or how many service users they have. Instead, the main goal is to find out the extent to which the five key human rights principles are embedded in the laws, policies, programmes and social attitudes and are experienced in the everyday lives of persons with disabilities. The five human rights goals around which the monitoring work is structured are: dignity; autonomy; non-discrimination and equality; participation, inclusion and accessibility; and respect for difference. Dignity refers to the inherent worth of every person. Everyone should feel respected in their community and their society and their everyday activities. It is about how a person feels and not just about how they are treated. Autonomy is the right of a person to make his or her own choices independently or with support. It places a person at the center of all decisions affecting him or her. Discrimination is the unjust or prejudicial treatment of persons because of their impairment, race, sex, language, religion, political or other opinion, national or social origin, property, birth or age. Everyone has the right to enjoy human rights equally. Rights, responsibilities and opportunities do not depend on whether someone is born with or without certain qualities. Society must provide everyone with what they need to exercise their rights. Sometimes what a person needs to exercise his or her rights equally will be different from what is needed by another person. Inclusion is the right of all persons to participate fully and effectively ipso facto. It is the existence of a society that is organised to be accessible and is without physical or social barriers. Finally, respect for difference is recognising and accepting differences or variations among people as part of human diversity. Thus, difference should not be the reason to deny someone his or her rights and dignity.

The DRPI monitoring cycle The DPRI human rights monitoring methodology combines three areas of monitoring: individual monitoring (a collection and analysis of daily life experiences of persons with disabilities), systemic monitoring (the review of national legislation and its compliance with the CRPD) and media monitoring (indicative of societal attitude towards disability). Such an approach guarantees the triangulation and comprehensiveness of conclusions, as there are multiple sources of data revealing the patterns of human rights violations across different life domains (Rioux, Pinto & Parehk, 2015). Within the DRPI system, each of the three areas is equally important and the monitoring process as a whole is viewed as a means for building capacity and empowering persons with 372

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disabilities and their organisations to monitor their rights and to work together through coalition building and national partnerships. This guarantees the sustainability and national ownership of the process, as the know-how of the monitoring process stays with the local and national Disabled People’s Organisations (DPOs) who may then use that knowledge and skill for future monitoring cycles. DRPI works in countries where national DPOs express an interest in engaging in disability rights monitoring processes and where there is willingness among DPOs to work together and apply a cross-disability approach. DRPI also fosters partnership building among DPOs ensuring that no one is left behind and that all constituencies in the disability movement are involved. Once the national coalition is established, DRPI in partnership with the DPOs, set up a national training in order to build capacity among national partners to use its holistic monitoring methodology in the field. Once the training is provided, national DPOs engage in monitoring usually (though not always) across all three areas of monitoring. To address the first element of DRPI holistic monitoring, the individual experiences of a balanced and diverse sample of persons with disabilities are collected through in-depth semi-structured interviews with persons with disabilities, conducted by trained monitors – their peers. The value of such an approach is visible in the opportunity provided to persons with disabilities to tell their life stories, and offering an insight of the meaning of human rights enjoyment or violation. The fact that the interviews are done by their peers – other persons with disabilities – creates a relationship of trust, while engaging persons with disabilities directly in data collection. This enhances the understanding of these interviewers and disability rights activists about the diversity of experiences faced by persons with disabilities in their country. It also strengthens the advocacy agenda by putting faces to human rights problems and raising awareness about the situation of persons with disabilities through a more thorough understanding of the patterns of human rights violations that are found in multiple interviews. All these are ways of reinventing activism and re-enacting the wellknown slogan – ‘nothing about us without us’ – aiming for social change that brings about a more inclusive and barrier-free society. It nonetheless goes beyond the slogan ‘nothing about us without us’ as it is grounded in the recognition that activism means changing the entire social systems and structures and ways of doing things in order to come closer to ‘nothing without us’. Persons with disaiblites have to do more than changing their own environment; they have to change every environment if they are to be able to exercise their rights. Change has to be grounded in the recognition of how persons with disabilities reimagine an inclusive world and those without disabilites will need to adapt to those changes. The second form of monitoring is understood as a more traditional sort of monitoring, as it encompasses the analysis of the extent to which national laws and policies are compliant with the CRPD standards and are guided by rights outcomes. This work is done not just through analyses of the normative framework, but also through an examination of budgets allocated to the realisation of particular programmes, in addition to existing case-law at the national level. It also done across the life domains analysed in the individual stories provided through the interviews. DRPI has developed a template for this assessment with a set of questions and indicators for each of the CRPD provisions. The template is used to assess the current state of compliance at the domestic level. Engaging persons with disabilities, reinventing activism, means that we put the spotlight on recognising that the fundamental basis for social justice is inclusion in all aspects of society, not just those in which persons with disabilities have traditionally been relegated. Finally, through media monitoring, DRPI analyses the media reporting on disability and the media portrayals of persons with disabilities. As media has a powerful influence over 373

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public attitudes towards disability (Chidemo, Chindimba & Matongo, 2019), it is important to get an insight into the picture that the media is painting of persons with disabilities. This allows an investigation of the extent to which dominant representations are helping to diminish disability prejudices and stereotypes or are, on the contrary, supporting their existence. The media is often prone to report on disability using a charity-based approach. Thus, it usually depicts persons with disabilities as poor, helpless and dependent on others (a medical perspective) (Haller, 2010). Thus, focusing on medical advancements, research or medical aspects of disability, a heroic perspective, which focuses on individual achievements using persons with disabilities as an inspiration for others. At times, uses a human rights perspective, which provides the realistic insight into disability issues and raising questions in line with the human rights approach. Findings from this perspective are valuable in terms of planning how to work with the media in order to create a public image that would move towards shifting societal negative attitudes towards disability and persons with disabilities. DRPI has developed a participatory set of tools for conducting all three phases of monitoring to ensure that the work is conducted in a reliable and rigorous way. All these tools are available free for DPOs around the world that wish to engage in disability rights monitoring. An online training on disability as a rights issue and on using DRPI tools to conduct holistic monitoring and support disability rights advocacy efforts is also available for free in the DRPI Hub (see http://drpihub.research.yorku.ca/). Through national projects taking place on all five continents, DRPI has been supporting activism within the disability movement. Combining the findings and the data from all three areas of monitoring and recognising the key issues of concern for persons with disabilities, provides a realistic and comprehensive picture of the state of disability rights in any country. This represents the starting point for DPOs to get involved in monitoring processes, shape and strengthen their evidence-based advocacy campaigns, at both the national and international levels. Once the data are collected and the holistic monitoring report prepared, DPOs have solid data to accelerate their advocacy efforts and activism and to choose their political strategy. Monitoring is thus regarded as the fuel for reinventing activism in the field and as a place to start the struggle for the improvement of disability rights, rather than an end.

The DRPI people’s indicators One of the key aspects we learnt from the DRPI monitoring was the need to recognise and honour the way in which people themselves define and understand rights and actions; and how they are impacted personally by the way in which rights and actions are implemented. As a result, our individual monitoring is driven by the voices of persons with disabilities themselves. We listened, we learnt and we recognised that we cannot monitor in a vacuum, nor can we develop indicators in a vacuum. An indicator demonstrates what a situation is like and can show a change in the situation over time. Social indicators provide a way to measure what is going on and may be composed of one variable or several components combined in an index. They provide a background to understand what is happening in a particular sector (e.g. economic, social, health, education), well-being or other factors – and a measure to understanding what is happening to people and how it is changing in terms of either getting better or worse for the individual. As described elsewhere, ‘the data are generated through a process that simplifies raw data about a complex social phenomenon’ (Merry, Davis, & Kingsbury, 2015, p.4). Indicators can be local, regional and global and can be used to measure practices of the CRPD, the Sustainable Development Goals (SDGs) and other international standards (DRPI, 374

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2017, p. 2). However, many people may look at a situation and come to different opinions about whether there is success in achieving goals. For example, for some people, simply having a job or having more jobs than the previous year, counts to show how well persons with disabilities are doing in employment. For others, only those jobs that are non-precarious and secure and are decent work as well as work that uses the skills of the individual would be recognised as valuable and contributing jobs. Sheltered workshops or jobs with bad working conditions would not be recorded as indicators for having a job. Another example: being in a school does not, for many persons with disabilities, feel as though it is an environment in which they can learn, so they would not count that as a solid learning opportunity. Counting people in inclusive classrooms does not provide a measure of learning. Particularly, when we are studying disability or other marginalised groups or intersectional disadvantage, we need to ask people what they consider learning, jobs or inclusion. If we do not, we risk the error of counting who gets services or programmes and yet we cannot measure progress. Being in a programme does not mean being of a programme or benefitting from the outcome. The People’s Indicators evolved from the voices of persons with disabilities in over fifty countries. These indicators are designed to identify which laws, policies, practices and public attitudes result in the extreme and widespread documented poverty, exclusion and rights abuses experienced by persons with disabilities. The indicators (…) raise the voices of persons with disabilities and focus on their own expression of what poverty and exclusion (or inclusion) means. The experience of ­d iscrimination as expressed by those facing it themselves is not only a theoretical notion but also the recognition of the denial of fairness. (DRPI, 2017, p.3) The People’s Indicators are drawn from the lived experiences of persons with disabilities. These indicators are based on a measure of progress determined by how persons with disabilities see change in their everyday lives. Thus, they also recognise the reality of the intersection of disability with the experience of indigenous people, women, minority castes or classes as well as refugees and immigrants. In being holistic, they point to the impacts of the dual and multiple statuses on poverty and exclusion.

Silencing the invisible hands Alongside the CRPD and SDGs (and other international instruments and development projects) the People’s Indicators is a tool to recognise disability rights in practice and in principle. To reinvent activism, the voices and perspectives of persons with disabilities are key to define what the goal is, in addressing inclusion and non-discrimination. Reinventing activism means recognising that those who are most impacted by international agendas are those who should set the goals. The invisible hands of the North, State governments, United Nations agencies, as well as those who run international development projects, can be helpful in monitoring; but only if those with disabilities have the latitude to set the outcomes of the work. Those without disabilities cannot put themselves in the place of individuals with disabilities in schools, in the labour force, in the health milieu. Being in hostile environments because one is different leads to an altered interpretation of what is needed and progressive realisation of goals means giving priority to the goals recognised by persons with disabilities themselves. Less than that is not a reinvented activism; it is imposing an uninformed agenda with many presumptions. We have a good deal of evidence that social exclusion and discrimination increase ­v ulnerability to abuse, chronic poverty, unemployment and inequitable social conditions 375

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(see Raphael, 2012; Commission on the Social Determinants of Health, 2008; Pantazis, Gordon, & Levitas, 2006) In the People’s Indicators, we have found a methodology to incorporate the personal perspective of those facing social exclusion and discrimination. It is more than just whether a person gets a service or access to a programme. It is qualitatively different to understand what a good learning experience is; what a decent job is; and what it means to have food security and improvised nutrition. Eating what others chose for you is not an indicator of food security nor does it lead to improved nutrition. In Table 28.1, we provide a few examples of what the People’s Indicators look like and how they can be used for monitoring international human rights. And yet it remains challenging to recognise the voices of those with disabilities because sometimes it is contrary to what has been accepted as orthodox in terms of indicators or of understanding the limitations of persons with disabilities. It may question the traditional ideas about disability as a medical condition, as a charity, as incapacity, or as disfunction. It contests ideas that people should fit into the institutions that have been operating, out of kindness, for many years. To question orthodoxies is often to shake up the status quo – things that have been done one way for years may not be the choice of activists. These challenge the Table 28.1  E xamples of the People’s Indicators and their potential use for monitoring international human rights

Indicator

Relationship to CRPD and SDGs

Accessibility to ensure equality, inclusion and a life with dignity:

CRPD Article 9

• number of universal design and accessibility courses provided at universities or continuing education programs. • mechanisms in place for an accessibility audit of public buildings and the existence of a general database of public buildings’ accessibility at all levels of governance. • evidence of regulations in place governing the accessibility of information and communication systems including broadcast TV. • evidence of pedestrian infrastructure accessibility and transport system accessibility.

SDGs 1–11; 13; 16–17

Quotes ‘When there are no subtitles in Serbian Sign Language or subtitle on the TV, I have to wait to read tomorrow’s newspaper and I always get the information later. Everyone already knows the information and obtained it a lot before I did. This is not equality. We should receive information at the same time as everyone else, today, not to wait for tomorrow’s newspaper to find out today’s news.’ ‘In the doctor’s office I go to, the door is so tiny that they have to open two doors to get me in… and they don’t have buttons on the doors anywhere. A lot of bathrooms are not accessible for a large scooter… and if they do, usually somebody else is in there that shouldn’t be there, like a mother with a child or something because they sometimes put the changing table in the large bathroom…’

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Indicator Living independently and being included in the community with dignity and respect for difference:

CRPD Article 19

• evidence of policy/programs at national, state and local level available to persons with disabilities to live • evidence of public policies or programs that guarantee access to persons with disabilities to community services and facilities.

Inclusive education with dignity: • number of reported cases of discrimination • budget for adapted education • success rates in finishing school and moving to jobs or further post graduate education

Quotes ‘They put me out earlier to a home for special care for five years… homes for special care, they are the bottom of the bottom rank… they are really bad and particularly the one I was in was a farmhouse… just a farmhouse where I slept three in a room with just a rotten mattress… it was just horrible. It was horrible.’ ‘I tried to board a bus and the conductor [and the driver] kept saying, “Faster! Faster!” and yet we were very many people. Because of this I fell down but the vehicle went on ahead. My hands got hurt.’

CRPD Article 24 SDG Article Goal 4

‘I was told I demanded a lot. I had a lot of expectations cause I did not understand the work and I was very lost in the classroom. Things were happening that I didn’t process very well… so this professor made me feel terrible and I ended up crying in her office.’

need to change the way things are done rather than fitting persons with disabilities into current arrangements. Pedagogical theory has to change; employment has to include affirmative action and accommodation, and inclusion is not only about ramps but about welcoming and adapted (non-hostile or non-discriminatory) environments.

Reinventing activism – success stories If in setting indicators, it is important ‘to find ways to give voice to persons with disabilities, in articulating their experiences of discrimination and in expressing their concern, aspirations and need’ (DRPI, 2017, p. 4), equally important is to acknowledge the transformative power that such an experience can hold for those who get involved in it. Activism is about taking action to effect social change. And yet, as individuals and organisations become engaged with ‘changing the world’, they too are transformed through the work they do. Indeed, engaging in disability rights monitoring and developing indicators drawn from disabled persons’ stories and voices has been described by participants from all over the world as an empowering experience that turns isolated individuals into global, collective activists, and forever changes their worldviews and forms of activism. Below are a few of the stories of reinventing activism we have heard throughout the years in DRPI projects. The first one

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(Case study 28.1) is from Elena Ratoi, a project assistant and data analyst in DRPI country monitoring project in the Republic of Moldova.

Case study 28.1: Elena Ratoi – Republic of Moldova It was a unique opportunity to participate directly in the process of monitoring people with disabilities’ rights in Moldova, based on the methodology developed and tested by DRPI. (…) For me personally, this exercise was an eye-opening one. (…) Although previously I had been fully aware about discrimination and barriers met by people with disabilities – as a person who has a disability, after monitoring I have realised various forms of discrimination faced by people with various types of impairments. I could understand that discrimination has different faces and I was able to put myself into anybody else’s shoes and understand all the struggles he or she has. Besides this, the findings and data released after the monitoring helped me to prove to the whole society that discrimination against people with disabilities does exist and this is reflected not only in the inaccessible infrastructures, but it is also related to different attitudes and ways society perceives people with disabilities and lack of opportunities.

In Case study 28.2, we provide a case study from Celestin Nzeyimana, Executive Director of NPC Rwanda, ParaVolley Africa Secretary-General, expert in inclusive sport and Paralympics. Celestin also implemented DRPI monitoring training and data collection in Rwanda in collaboration with the National Union of Disability Organizations in Rwanda (NUDOR).

Case study 28.2: Celestin Nzeyimana – Rwanda It was in the evening, when I was about to leave my office, that I received a telephone call from the President of the National Union of Disability Organizations in Rwanda – NUDOR, asking me if I could attend the training course on monitoring the Rights of Persons with Disabilities in Pretoria, South Africa led by DRPI. I responded immediately yes. (…) I successfully attended the course in Pretoria (26–29 February 2016), which I enjoyed and learnt a lot (…) Back in Rwanda, I started applying what I had learned from the DRPI workshop with the support of NUDOR office. The first activity was to organise and conduct a training of monitors on how to use the DRPI tools in monitoring disability rights. Ten participants with disabilities from NUDOR member organisations benefited from the training and participated in the DRPI pilot project through online interview. Not only they gained knowledge, but these ten persons with disabilities got temporarily a job as site monitors and were paid by the project. In addition to that, the training built their capacity and self-confidence in the disability field; after the research period, most of them were recruited permanently as field officers and project managers by disability organisations in Rwanda. ‘I didn’t know that I could have any role to play in disability issues, but after the training and the work on the field, I am empowered, I have a commitment and I’m engaged in promoting disability rights,’ said one of the trained monitors after the site work in the southern province of Rwanda.

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NUDOR has now drafted a parallel report containing data from individual experiences. This year 2018 the report will be reviewed and some recommendations will be addressed to the Rwandan Government for better improvement of the life of persons with disability in Rwanda. Actually there are projects elaborated to respond to the issues from this research. Also, ­N UDOR recruited a permanent legal advisor and advocacy officer in order to continue the follow up and make more research of this kind in future. According to me, this is a great success, and I am very happy for taking part of this progress.

Fundamental Colombia is the national organisation in Colombia that represents persons with psychosocial disability. This organisation is part of the World Network Of Users and Survivors of Psychiatry (WNUSP) and it is the first Latin American structure that deals with issues related to psychosocial disability. Fundamental Colombia was very active since its foundation in promoting the rights of persons with disabilities; however, when interacting with governments and public agencies, they always found very hard to find evidence to back up their arguments about the harsh life of persons with psychosocial disabilities in Colombia. In 2014, DRPI partnered with Fundamental Colombia and the DRPI methodology was adapted for persons with psychosocial disability. Leaders from Fundamental Columbia were interviewed during the DRPI Project and Case study 28.3 presents some of the stories showing how important it was for them to monitor their rights.

Case study 28.3: Fundamental Columbia testimonials Now that we know our rights and how to monitor them, we are more powerful when trying to get things such as appropriate medication or medical treatment (Female, 35 years old – Bogotá). Now that we have our right to participate in public life, I would like to be elected as city councillor; I hope people trust me (Male, 45 years old – Mérida). Now that we want to write our alternative report for the CRPD; we have relevant data to share that support our perspective (Salam Gomez, President of Fundamental Colombia, 2015; local coordinator for DRPI Colombia).

In 2012, a seed grant enabled the development of the first DRPI pilot project in Portugal. This project involved researchers from the University of Lisbon and the main cross-disability organisation in Portugal – the Portuguese Association of Disabled People (APD). As a follow up, in 2013 the Disability and Human Rights Observatory was created at University of Lisbon. The ODDH set up an advisory board composed of representatives of the main disability organisations in the country. This board has been fundamental in bringing together people with disabilities and academics around disability rights monitoring. The first big goal that the ODDH embraced was the development and submission of the parallel report during the process of evaluation of Portugal as State Party to the Convention in 2015–2016. The report was developed on the basis of the data gathered through a large DRPI monitoring project conducted in the country in 2014. Initially prepared by members of the ODDH advisory board, the report gained political power and representativeness through an iterative dialogue sustained at national level, enabling in the end that 379

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241 disability organisations subscribed the report. A disabled advocate commented: ‘This is an absolute historic consensus. Never before had it been possible in the Portuguese disability movement to bring together such a high number of DPOs, and overcome the political divisions among us. Our voice is much stronger now!’ With the wide representativeness achieved with this report, the voice of Portuguese disabled people had also a strong impact on the CRPD Committee, who heavily draw from this paper to issue its Final Observations.

A final note Over the last decade, much in response to the monitoring request of the CRPD, an increasing number of initiatives have been launched to collect data and develop indicators on ­d isability.2 DRPI is one such system that is based on the human rights approach and offers the advantage of data comparability across the globe, while ensuring a local defintion of what are the key human rights issues. Viewing disability from the perspective of human rights means recognising that more than just service provision, persons with disabilities look for equality-based, non-­d iscriminatory services and programs that promote their autonomy and respect their dignity. It is about recognising the impact of services, facilities, and institutions on the users of those facilities. Indicators have to be informed by those goals. The meaning of service and inclusion with dignity comes from those who have disabilities being able to engage in their definition – that is the way to reinvent activism – to understand what poverty, disadvantage and exclusion mean to people who experience them. It is not possible to monitor rights or build indicators without that understanding and it is not possible to find solutions without that knowledge.

Notes 1 For more information, see the DRPI website at http://drpi.research.yorku.ca/welcome-drpi/. 2 See, for instance, the Disability Data Portal at https://www.disabilitydataportal.com/ and ­DOTCOM, the Disability Online Tool of the European Comission, at https://www.­d isabilityeurope.net/dotcom.

References Barnes, C., Mercer, G. (2010). Exploring Disability (2nd ed). Cambridge: Polity. Chidemo, L., Chindimba, A., & Matongo, L. (2019). Disability advocacy through media: action power. In T. Chataika (ed), The Routledge Handbook of Disability in Southern Africa (pp. 315–321). London: Routledge. Commission on Social Determinants of Health (2008). Closing the Gap in a Generation: Health Equity Through Action on the Social Determinants of Health. Geneva: World Health Organisation. DRPI (2017). The People’s Indicators: Evidence Based Participatory Indicators – Measuring Progressive Realization. Toronto. Retrieved from http://drpi.research.yorku.ca/drpi-the-peoples-indicators-­evidencebased-participatory-indicators-measuring-progressive-realization/ on 24 November 2018. Farnsworth, K., & Irving, Z. (2015). Social Policy in Times of Austerity. Bristol: Policy Press at the ­University of Bristol. Fukuda-Parr, S., Lopes, C., Malik, K. (2002). Capacity for Development: New Solutions to Old Problems. New York: UNDP. Haller, B. A. (2010). Representing Disability in an Ableist World: Essays on Mass Media. Louisville: Advocado Press. Kanter, A. S. (2014). The Development of Disability Rights under International Law: From Charity to Human Rights. London: Routledge.

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Reinventing activism Kuzek, J. S., Rist, R. C. (2004). Ten Steps to a Results-Based Monitoring and Evaluation System. Washington D.C.: World Bank. Lindqvist, B. (2015). Monitoring: a key element in realizing human rights for all. In M. Rioux, P. Pinto, & G. Parehk (eds), Disability, Rights Monitoring and Social Change: Building Power out of Evidence (pp. 13–23). Toronto: Canadian Scholars Press. Merry, S. E., Davis, K. E., & Kingsbury, B. (2015). The Quiet Power of Indicators. Cambridge: Cambridge University Press. Pantazis, C., Gordon, D., & Levitas, R. (eds). (2006). Poverty and Social Exclusion in Britain: The Millenium Study. Bristol: Policy Press. Raphael, D. (2012). Tackling Inequalities in Health: Lessons from International Experiences. Toronto: Canadian Scholars Press. Rioux, M., Basser, L. A., & Jones, M. (eds). (2011). Critical Perspectives on Human Rights and Disability Law. The Hague: Martinus Nijhoff. Rioux, M., Pinto, P., & G. Parehk (eds). (2015). Disability, Rights Monitoring and Social Change: Building Power out of Evidence. Toronto: Canadian Scholars Press. United Nations (2006). Convention on the Rights of Persons with Disabilities. (A/RES/61/106).

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PART IX

Enabling human rights and policy Transition: international politics

29 IMPLEMENTATION OF CRPD IN THE POST-SOVIET REGION Between imitation and authenticity Egle Sumskiene, Violeta Gevorgieniene and Rasa Geniene Introduction After the fall of the Iron Curtain, many myths about this region collapsed together with the Soviet Union (SU). These myths were part of the official rhetoric of the Soviet politicians, which aimed to support the idea of a healthy, harmonious and able-bodied Soviet society. ‘There are no invalids in the USSR’ (Philips, 2009; Kell et al., 2008, p. 66) was one of such declarations, addressed towards the rivals of the Cold War as well as towards the citizens of the SU. However, in early nineties of the last century, the world found out that actually there were ‘invalids’ in the SU and was shocked by their living conditions, cases of extreme neglect, torture and violence. Therefore, in this chapter we focus on the implementation of disability rights in the ­Eastern European post-Soviet region which has been particularly neglected in terms of disability scholarship and activism. All over the world, human rights tend to become not only the main impetus of many social development processes (including disability activism), but also one of the main criteria of the success of social projects and initiatives. However, when it comes to persons with disabilities, understanding of their rights is often reduced to basic needs, and instead of freedom to exercise one’s rights, narrowly understood ‘social justice’ becomes the focus of the debates (Hirschmann, 2016). The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), which seeks to reinstate the focus on rights and upgrade the idea of equality to that of equity (United Nations, 2006). The process of social integration of persons with disabilities is not always smooth, and the very need to develop the CRPD itself confirms this. In many democratic countries the awareness of the rights of persons with disabilities and search for strategies for their inclusion has been taking place since the middle of the 20th century. These developments were backed by several factors, such as democratic developments, public discourses on disability, and adoption of the social model of disability. Especially worth mentioning is disability rights activism, which shaped conversations around disability and initiated a shift of focus from charity towards fight for equality. Inclusion-oriented disability legislation (both national and international), political participation, inclusion in education and labour market, availability of community health and social services, accessible physical and informational environments, are the most important aspects of life of persons with disabilities. Due to the 385

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decades of disability activists’ efforts in democratic countries, these rights undergo major accommodations and continue to be under a magnifying glass and continuous efforts to improve the status quo. In particular, democracies in the global North had several decades to domesticate the idea of inclusion, community care and independent living for persons with disabilities. This also meant the development of disability rights discourses on political, academic, socio-economic levels, as well as an acknowledgement of the importance of the reform both for persons with disabilities and for society as a whole. After the collapse of SU, the countries of the former Eastern Bloc undertook essential socio-political changes, and often happily adopted concepts, values and paradigms of Western democracies in the fields of education, integration and rehabilitation of persons with disabilities. Yet, caught in the trap of time (eager to do it fast and reach the level of more advanced countries) they often omitted important aspects of any policy change such as democratic discourse, inclusion of grassroots movements and critical reflection on the social and political transformations. Paraphrasing the well-known expression ‘don’t throw the baby out with the bathwater’, it may be argued that post-socialist countries were happy to get ‘the baby’ (the new paradigm), but often neglected the importance of ‘water’ or the thorough discussion on the issue in society with professionals and persons with disabilities which were most affected by the policy changes. Therefore, a gap formed between the well-developed legal acts, politically ‘right’ concepts (such as, for example, integration), which were often used on the policy level, and the realities on the ground for persons with disabilities. In order to understand the complex picture of the current situation of disability rights in former SU countries, we start from the theoretical review of socio-political legacy of the former Soviet Block and its implications for the rights of persons with disabilities. Though different ethnically and culturally, societies of Soviet republics were, nevertheless, the ‘product’ of the purposeful ideological project of the ruling Communist party. They all, as we will reveal below, lacked freedom of speech, thought, and were governed by a value system, which depreciated those who, due to disabilities could not actively participate in the building of communism (Tlostanova, 2015; Balockaite, 2015). This ideological uniformity as well as similar paths of post-Soviet transformations allowed us to some extent to generalise the research data we collected. Then we investigate empirically the current situation of persons with disabilities from two perspectives. Firstly, we analyse official countries’ reports on the implementation of CRPD in order to see how the situation is presented officially to the United Nations Committee and to a wider public. Secondly, we refer to interviews with experts, representing well-established human rights and/or disability organisations in their countries. Those interviews allowed us to complete a picture of the real situation of persons with disabilities and to reveal and compare the trajectories of disability rights awareness and implementation in former SU countries.

The legacy of the Soviet system In the SU and its satellite countries, the Communist system of care for persons with disabilities functioned in terms of ‘social protection and social regulation’ (Tobis, 2000, p. 5). Persistent and consequent implementation of these functions led to a ‘homogeneous and able-bodied’ Soviet society (Tobis, 2000, p. 5) and exclusionary citizenship. Therefore, hundreds of thousands of citizens with disabilities lived hidden and confined in thousands of large institutions of residential care, under inhumane and degrading conditions (Vann & Siska, 2006). Absence of possibilities not only to communicate with persons with disabilities, but even to hear about them or meet them in daily life caused an illusion that they didn’t exist 386

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and if they did, belonged to a dehumanised reality somehow existing outside the borders of a ‘normal life’. The reality of that ‘normal life’ was shaped by public discourses, whose content was strictly regulated by the Soviet government and used to subordinate the roles of people who could not fully participate in the building of socialism, such as persons with disabilities (Von Seth, 2011). The language used in the former Soviet satellite countries to describe these persons was paternalist in terms of protection of ‘needs’ and within an entrenched medical model of disability (Ciot & Van Hove, 2010). Aubrecht (2014, p. 39) argues that: Medicalized and psychiatrized understandings of disability secure a position for disabled persons within the community, but they do so primarily from a nondisabled perspective and within an institutional framework that has its historical origins in the devaluation of corporeal difference. The need to conform reality with the official texts (not vice versa!) was a cause of many false reports, which aimed ‘to maintain an appearance of social and political stability’ (Balockaite, 2015, p. 221). As we will present later in the text, overcoming the trend of falsification still remains a challenge. However, for democratic processes, public discourses and reflections on reality are essential as they imply ‘emancipatory force’ (Mihai, 2016, p. 23). Without them it is impossible to change the habitus or a deeply entrenched set of traditions, approaches and norms (Bourdieu, 1977) and to integrate new approaches in the course of socio political change. First, possibilities to freely express one’s opinion in the SU, emerged during the period of perestroika (or reforms) and glastnost (or transparency) during the leadership of Mikhail Gorbachev and implied the need ‘to learn to unlearn in order to relearn’ (Tlostanova, 2015, p. 270), that is, to speak the way that reflects reality. This re-learning also implied the revision of the concept of ‘otherness’ in public discourses, in terms of disability, race, sexuality and other concepts not tolerated by the Soviet regime which was geared towards an ideologically unified society in body and mind (Rasell & Iarskaia-Smirnova, 2013). In this context, however, emerging disability discourses did not develop without tensions. It is argued that even in democratic Western societies, the state of disability rights is far yet from acknowledging that persons with disabilities are equal citizens and subjects to universal human rights (Hirschmann, 2016, p. 44). The medical model language is still encountered (Boyd et al., 2015) and ‘people first’ language not always leads to more equity and less discrimination. Thus, even long term discourses on the rights of people with disabilities imply only a gradual transformation of an old habitus, both in society and professional communities. Speaking about post-Soviet societies with a long history of authoritarianism and too short experience of freedom to speak and raise questions, the process of transformation will take longer. Existing professional practices and language still sometimes reflect an older and more patronising approach to persons with disabilities.

The path of reform Besides shifts in language, after the collapse of communism many structural changes took place as well, mostly in attempts to transfer to a community based care model. Especially this applies to the Central and Eastern European countries, which joined the European Union (EU) and committed to the values of human dignity, equality and protection of human rights. However, the system of residential care appeared trapped 387

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between the international obligations to implement reforms and the burden of Soviet heritage, which included high levels of stigma, social exclusion and provision of medical treatment for persons with disabilities. Reforms were often started from the ‘top-down’ and no time was allocated for a thorough discussion about the purpose, implications and even process of changes. Scholars noticed the phenomenon, that more than two decades of numerous attempts to promote reforms, including EU funded investments in training of staff, reconstruction of buildings, modernisation of services and other components of the mental health services in Central and Eastern European countries, have not resulted in a full change of the paradigm, as institutional culture and the tradition of exclusion still remain strong (Puras et al., 2013). There were many reasons for this, including economic difficulties, societal attitudes, structure of professional competences and so on. We argue that one of the main reasons why the medical model prevails is the lack of a public and professional discourse on disability and of courage to acknowledge problematic areas in reforms which sometimes leads to propensity to ‘imitate’ achievements. Paraphrasing Tlostanova (2015, p. 272) and Hartblay (2017), this imitation means ‘a stagnation of any alternative political or social movements and actors’. What concerns emergence of disability activism, after the collapse of SU in 1991, persons with disabilities and their friends and families were the first to initiate public discussions about disability (Sumskiene, 2017). Yet, due to the historical circumstances they often found themselves without the necessary economic, cultural or symbolic capital (Bourdieu, 1977) and did not have the resources necessary to initiate and lead changes. At the outset of the disability movements, activism focused on securing basic needs of persons with disabilities, such as provision of necessary services, collecting and distributing charity for those in need or recommending to professionals that services continue (Holland, 2008). However, disability organisations have quickly realised that a charity model neither leads to an independent life nor changes unfavourable societal conditions, as explained by Oliver (1990): disablism; internalised ableism in society; oppression; and exclusion. Gradually, disability rights activism broadened its scope and started promoting a bottom up participatory approach, individualised education, work and life in the least restrictive of environments. In the Central and Eastern European countries, disability rights movements emerged together with the rebirth of civil society in the early 1990s, and they quickly developed into national organisations. Nowadays they are the main advocates for the development of community care services, initiators of social campaigns for equal opportunities, supervisors of disability policy, as well as the principal maintainers of the national disability discourses.

Research methods This section describes combination of two different types of data. We firstly present qualitative interview data about the implementation of the CRPD from six leading national experts. Secondly, we engaged in an analysis of the State Parties’ reports on the implementation of the CRPD with a focus on the Article 8 of CRPD on ‘Awareness raising’ (United Nations, 2006). Such triangulation of methods was aimed at checking the coherence between the official information on the state of disability rights and actual disability practices thus contributing to the understanding of the processes of paradigm shift from the medical model to one of disability rights. Data were collected from November 2017 to January 2018 and using Foucault’s genealogical analysis, a framework was established to critically examine disability policy making. 388

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The genealogical perspective, ‘deals with events in terms of their most unique characteristics, their most acute manifestations’ (Foucault, 1998, p. 381). The analysis includes: •

•

An examination of institutional structures, play of political forces, role of change-agents (e.g. information obtained through interviews with activists in human rights and on disability issues, representatives of NGOs); An exploration of textual discourses as an instrument of power (e.g. information obtained from the official State Parties reports to the CRPD).

By the combination of methods and two level analysis we aimed at examining what current disability discourses in European post-Soviet countries tell us about the issues related to the implementation of the CRPD.

The viewpoints of experts in the disability field The data of experts’ attitudes towards the disability discourse in respective countries was gathered using semi-structured skype interviews (Bryman, 2015). Six respondents took part in the research; all of them represented NGOs from different countries in the region – Lithuania (two experts, coded as LT-1 and LT-2), Latvia (LV), Estonia (EE), Belarus (BY) and Ukraine (UA); five of them were female and one was male. The participants of the research were selected according to the following set of criteria: practical in-field knowledge of the topic; active participation in NGO activities; having been recognised as a national and/or international expert in the field. All the contributing experts have profound practical experience in respective countries, which covers the time span from the early 2000s. The professional backgrounds of the research participants involve academic fields such as social work, law, psychiatry, psychology, as well as personal experience of being a person with disability or a caring family member. Respondents were selected through their membership in academic and NGO networks and the status of the experts has been subjectively attributed by the researchers (Meuser & Nagel, 2009). Detailed information about the research aims and the use of data was provided and experts’ informed consent received. Anonymity and confidentiality of the respondents was ensured and data protected (Bryman, 2015). As persons with disabilities were not directly involved into the research, and research covered the social-political level of the disability issues, special ethical requirements to the interviews were not applied. However, the general ethical approval for the research was obtained on a regular basis from the Ethics commission of the Department of Social Work and Social Welfare at Vilnius University. The semistructured interviews were based on a questionnaire guide that contained inquiries concerning society’s awareness about disability rights, CRPD and (non)existence of the public discourse on disability. The average duration of the interviews was approximately 30 minutes. Interviews were transcribed and then manually coded with a focus on thematic units (Meuser & Nagel, 2009).

Analysis of the official State Parties reports to the Committee on the Rights of Persons with Disabilities This review focused on the implementation of Article 8 on ‘Awareness-raising’ as presented by the official bodies of each country. The main ideas of Article 8 of the CRPD concern: raising awareness throughout society; fostering respect for the rights and dignity of persons 389

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with disabilities; combating stereotypes, prejudices and harmful practices; and promoting awareness of the capabilities and contributions of persons with disabilities. Analysis of the report on implementation of this Article in comparison to experts’ views allows the identification of discrepancies between public and political discourses as well as grassroots realities. In order to guide the review, we developed a 24-item questionnaire as a tool to identify countries’ commitments to promote disability awareness raising. A part of the questionnaire included factual questions, such as the number of symbols and paragraphs dedicated to report on implementation of Article 8, presence of an institution and/or legal document, responsibility for disability awareness raising, terminology used to define a person with disability, and so on. A significant part of the questionnaire contained questions related to specific measures of awareness raising in certain areas, such as employment, education, media, awareness raising in cases of multiple discrimination, and targets of the awareness raising. The questionnaire was applied to analyse the reports of the following eighteen countries of post-Soviet and post-Socialist region: Armenia, Azerbaijan, Bosnia and Herzegovina, Czech Republic, Croatia, Estonia, Georgia, Hungary, Latvia, Lithuania, Moldova, Mongolia, Montenegro, Poland, Serbia, Slovenia, Turkmenistan and Ukraine. State Parties reports were downloaded in December 2017 from the official website of the Office of the United Nations High Commissioner for Human Rights (OHCHR). The questionnaire was filled in by one researcher and in order to avoid bias, the most problematic cases were double checked by two other researchers. The data of the official reports on the implementation of Article 8 of CRPD was processed using the Microsoft Excel 2016 programme. It is presented in what follows.

Translating discourses of rights into practice The analysis of the data in the two stages on disability rights and the actual implementation of a section of the CRPD highlighted two themes. Firstly, there were differences in ingrained attitudes about what disability is and this was manifested in different translations of CRPD terminology. Secondly, there was an obvious gap between the enthusiasm of civil society organisations (CSOs) and prudence of policy makers in the process of policy implementation of the CRPD.

Terminology and attitudes The CRPD is more than an exhaustive list of persons with disabilities’ rights and entitlements; it also offers a new disability rights paradigm and a common focus for disability scholarship, politics and disability people’s organisations (Harpur, 2012, p. 2). A common focus is only possible when there is mutual understanding, shared attitudes and adequate terminology. Organisations of persons with disabilities insist that: How we write and speak about people with disability can have a profound effect on the way they are viewed by the community and themselves. Some words, by their very nature, degrade and diminish people with disability. Other words perpetuate inaccurate stereotypes. (People with Disabilities Australia, 2018) Article 1 of the CRPD discusses terminology-related aspects of disability and defines persons with disabilities as persons, ‘who have long-term physical, mental, intellectual or sensory impairments’ (UN, 2006). Nevertheless, even after adoption, signing and ratification of 390

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the CRPD an unresolved terminological confusion persists. First of all, it is obvious while comparing the official translation of the CRPD into respective languages, that it is adjusted to the local contexts and linguistic peculiarities and differs from country to country. Hence, the Lithuanian translation of the title of this document means ‘Convention on the Rights of Disabled’; in Russian it is ‘Convention on the Rights of Invalids’ and in Belarussian and Ukrainian it is ‘Convention on the Rights of Persons with Invalidity’. Our analysis reveals that State Parties’ reports on the implementation of the CRPD Article 8 use either the concept of ‘persons with disabilities’ (89%) or ‘disabled persons’ (11%). In most cases, this terminology corresponds to the official translation of the CRPD. Despite this, examples of patronising language, such as attempts to focus exclusively on ‘perceived’ strengths of persons with disabilities, were found in 21.1% of the reports. Interviews with disability experts confirmed the prevalent phenomena of paternalistic and patronising attitudes towards persons with disabilities. These attitudes were correlated to the ‘over-heroisation’ of persons with disabilities (LT-1): across the awareness raising campaigns they are depicted as super-heroes, instead of being portrayed as regular individuals. The Lithuanian expert insists that as a result of such campaigns, society fails to perceive persons with disabilities as an integral part of the society and the state: ‘Portraying them as heroes, as winners; fails to depict them as regular members of the society. Thus disability is not perceived as a normal, integral aspect of humanity’ (LT-1). Furthermore, 31.6% of the CRPD reports do not specify specific groups of persons with disabilities. Of those specified, in 36.8% of them attention is paid to physical disabilities but the strongest focus is on sensory disabilities (63.2%). Echoing these omissions, experts we interviewed expressed their concerns about the ‘neglected’ and ‘misunderstood’ groups of persons with disabilities: such as ‘persons with invalidity due to intellectual impairments’ (UA) and persons with mental illnesses which, ‘are not understood even by social workers directly working with such persons’ (EE). Thus, there is a trend that physical and sensory disabilities are the main targets of the awareness raising measures implemented by the state, whereas intellectual, mental and less visible and invisible disabilities remain marginalised. 70

63.2

60 50 40

36.8

31.6

26.3

30

31.6

20 10 0

0 Physical

Sensor

Intellectual

Mental

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Autism

Figure 29.1  Specific impairment-specific groups mentioned in State Parties Reports on implementation of Article 8 of the CRPD.

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Policy discourse: awareness of disability rights The experts’ interviews reveal a huge gap between the knowledge on the CRPD among representatives of disability CSOs and members of the general public, including persons with disabilities. Among disability activists, the CRPD has become a daily tool, a lens to judge whether a certain legal act or political decision corresponds with its requirements. Even linguistically, the CRPD abbreviation has turned into a generic term and inevitable part of their daily jargon. For instance, in their discussions the concept ‘Article 19’ equals ‘deinstitutionalisation’ (United Nations, 2006), although the rest of society might not be aware of both terms. Paradoxically, the experts state that such awareness has not reached yet the persons with disabilities community as a whole (LV). The data indicated big gaps in awareness, for example, in Belarus, where we found that persons with disabilities are one of the least informed groups. As an expert puts it: We notice that there has been noticeable increase in the debate about the fact of having the Convention, but what will we do with it now? The disabled have not been informed about the Convention (BY). Another expert stated that the level of awareness very much depends where people live as, ‘those in institutions, no, they don’t know about it’ (LV). Besides the uninformed persons with disabilities, in Lithuania and Estonia a large gap exists between activities of user-led organisations and awareness of general society. For example, one of the experts explained: A certain number of disability organisations is already well informed and seeks to implement that Convention. However, the recent survey of public opinion has revealed that it is little known by both: the public and disabled themselves (LT-1). According to the Estonian expert, one of the main prerequisites for knowledge about the CRPD is a real encounter with persons with disabilities and their relatives, which is the most effective form of awareness raising yet the most difficult to implement (Boyd et al., 2010). One expert concurred and stated that, ‘Not everybody in society is aware about the Convention. (…) It depends on if people have any connection with persons with disabilities, if not, they are not aware of it’ (EE). Concerning professionals practicing in the field of disability, all experts noticed differences in their level of knowledge, which mostly depended on who they worked with. For some disability experts, the best-informed are social workers, who have daily contacts with persons with disabilities as clients (LV, LT-1, LT-2, UA). The expert LT-2 explains this is because of legal regulations. According to her, there are certain requirements in social work legislation, which emphasise human rights and dignity of the persons with disabilities. Another profession, widely referred to by the experts, was medicine, for example, one expert argued: ‘Doctors wouldn’t take our clients [individuals with psychiatric diagnosis] so seriously. When they would see the diagnosis [they would] act differently’ (EE). Thus, medical personnel mostly follow a medical model approach: they perceive persons with disabilities first of all as patients, not as rights holders. According to the Ukrainian expert, the medical approach strongly dominates their disability policy as there are over 3100 persons with disabilities ‘chronically residing’ in psychiatric hospitals, where they undergo purely medical treatment. Overall, the experts argued that mainly the systematic efforts of CSOs help professionals to acquire knowledge about the principles of CRPD and learn to apply them in practice. 392

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Towards human rights paradigm: fragmentation versus integration The CRPD covers all aspects of persons with disabilities lives, and while certain Articles have been implemented successfully, other Articles have been neglected. For instance, ­A rticle 14 which implementation, according to one expert, has been ‘elided’ in the state reports (LV). In this section, summarising our findings, we will ground the discussion on two examples of successful implementation of two Articles in the CRPD. The first on Article 24 about ‘Education’ and second on Article 19 about ‘Living independently and being included in the community’ (UN, 2006). Ukrainian and Belarusian experts emphasise that the system of education is one of the areas undergoing the most positive changes to ensure inclusion of persons with disabilities. 42% of CRPD reports mention and address awareness raising in the education system, however inclusive education does not constitute an integral and consistent part of that system. In Ukraine, the concept of inclusive education is well known among professionals and politicians, as the local expert explains: ‘The school is unable to secure a separate assistant for each child with special needs, nevertheless the progress is obvious. And so is the political will’ (UA). The Ukrainian expert points to the strategic plans to reduce the number of children in ‘internats’ (boarding schools) by 40% before the year 2026. In Belarus, educational progress in the field of disability is also highlighted as one of the most advanced areas, as the country is on: A natural way to inclusive education. The development (…) of infrastructure and rehabilitation centers that work successfully, as well as other attempts to improve services for children – this is an unprecedented success compared to other areas (BY). Paradoxically, a major concern is that children with disabilities often do not have physical access to an educational institution, in terms of transportation or adjusted physical environment. Hence, the Belarussian expert metaphorically labels these inaccessible schools as ‘schools in the desert’. Another paradox lies in the fact that children and young people, the members of school communities, where persons with disabilities learn, are rarely targeted by disability awareness raising campaigns as follows from the analysis of State Parties’ reports on implementation of the CRPD. As a rule, the attempts to reform disability policy start with the development of legislation. Although a well-established legal base provides governments with speculative arguments on implementation of the reform, in fact the reality often does not change. State Parties’ reports on implementation of Article 8 of the CRPD (UN, 2006) have shown that in 42% of countries awareness raising is enshrined in national legislation, but as an integral part of a general legal document, which covers other protected characteristics such as gender, ethnicity and sexual orientation as well. Yet, no one country in this overview has specific legislation to implement non-discriminatory principles in the area of disability. While, acknowledging the overall well-developed legal basis, most experts are also critical about it. For instance, the Lithuanian expert notes that the government tends to emphasise only advanced aspects, which exist only in the form of legislation: ‘What the State did, it tried to pick out and highlight certain progressive legislation. We [CSOs], in turn, tried to disclose the reality that is neither regulated nor implemented in practice’ (LT-2). In such situations, civil society is allocated (or assumes or has to assume) the role of a watchdog, that observes and reports violations of rights of persons with disabilities. Long 393

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standing international research shows, that it is namely CSOs which criticise the system, promote disability rights and challenge outdated attitudes towards persons with ­d isabilities (Oliver, 1996; Shakespeare, 2006; Holland, 2010; Kelly, 2010; Dowse, 2001; AntiDefamation League, 2015). However, the analysis of the country reports under Article 8 gives the opposite impression, that it is the public sector which is assigned a role to raise awareness on disability issues. Experts confront this argument by bringing out cases of rhetorical and unjustified tokenistic examples, for example, one expert states: ‘We have this… something is done, one or two examples of new initiatives, and then the government may write that it is accomplished’ (UA). Another example of embellishing reality is provided by the Estonian expert who states: ‘Sometimes professionals perceive integration so generally that they present segregating activities as the examples of inclusion [for instance, a cultural performance of persons with disabilities in an institution for persons with disabilities]’. Such broad generalisations create an exaggerated picture of positive changes. One of the most urgent tasks in post-Soviet countries is deinstitutionalisation, which also provides much space for imitation and simulation. The Lithuanian expert gives examples of progressive legal capacity reform and deinstitutionalisation of care, which are currently taking place in Lithuania and emphasises, that these reforms were advocated for by CSOs for over a decade. In other countries, such as Belarus and Ukraine, the process of deinstitutionalisation has not started yet. According to the experts, national governments tend to evade responsibility for insufficient implementation of this Article. The Ukrainian expert insists that the government failed to start the reform of deinstitutionalisation, although an urgent solution is needed. According to the expert’s own data, there are 60000 people with intellectual and psychosocial disabilities living in long-term residential care institutions (so called psychoneurological internats) or psychiatric hospitals in Ukraine. Being a highly institutionalised country, Ukraine has not developed community services yet, as the country expert explains: From 2010, only four such homes were opened in all the country (…). It is not normal for such a country! But these few homes gave the possibility to authors of the official report to state that this task is implemented. How is it implemented?! (UA). These are the examples of most stagnating issues that CSOs try to highlight and advocate on national and international levels. They negatively affect countries’ international reputations as, ‘national governmental bodies very much depend on international donor support’ (UA). Some experts are disappointed by their countries’ strategies to follow only formal procedures and to refuse to listen and hear the voices of CSOs and influential international organisations, such as the United Nations. One of the tasks, CSOs are committed to, is piloting innovative services for persons with disabilities, which are in line with international obligations and standards. Governments tend to include such innovations in official CRPD reports as exemplary achievements, although they do not always provide sufficient support for the establishment and sustainability of those services. Alongside this situation, there are signs of a hidden agenda to weaken disability CSOs by depriving them of resources and excluding them from formal decision-making. The distribution of finances often reflects prevailing state policy rather than supporting innovative solutions or implementation of the CRPD. There is still a widespread phenomenon of paternalism where the state cares for all issues related to disabilities and the services are provided in a centralised manner, but not enabling 394

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persons with disabilities own responsibility for their lives and engagement in decisionmaking. Such services constitute a monopoly of the state, and therefore new services are doomed to fail or remain in existence as long as there is a certain amount of project financing. Services are organised vertically, from top to bottom, and therefore new initiatives are incompatible with a staggered policy. For example, in Belarus: The entire political and economic sphere is directed through the institutions – 99% of budget for disability issues goes through social protection, the state budget, and the person either agrees with such conditions, or is thrown out of the system. This is pure paternalism, and practically there are no opportunities for self-management of resources. The same is confirmed by the Ukrainian expert, that: The attitude towards inclusion depends on the government’s policy. Policy as an economic mechanism is reflected in money and in our case that is the policy of institutionalization. There is enough money, but they are allocated to institutions (UA). It can be noted that factual manipulation often arises when it comes to cross-sectoral cooperation as responsible institutions are likely to involve nongovernmental organisations (NGOs) in decision making, but decisions are predetermined NGOs are expected to endorse them without questioning. On the official level, the ministry of social policy formally observes the procedures. We were invited to the discussion on the report (…) We participated and expressed our opinion, in a written form, what must be, how we see the project of the governmental report. But they didn’t include our comments, critical comments (UA). The ostensible partnership of the state is also noted by the Lithuanian expert: In sum, the state (…) has prepared a generalised plan for the implementation of the recommendations of the Committee [on the Rights of Persons with Disabilities], as they see it from their perspective. (…) The state invited us [disability CSOs] to support such a plan, but we didn’t meet because we did not agree with that plan (LT-1). The implementation of the aforementioned recommendations is often compared to the regular public sector functions that are envisaged in the annual plans, and decisive changes in the system often lack the ‘political will’. This leads to the situation, which is concisely worded by the representative of the post-Soviet disability NGOs as, ‘implementation of the Convention in an unconventional way’ (LT-2).

Conclusion For the change of the old habitus (e.g. a certain set of norms, traditions, approaches) to be possible, the objective structure must be in crisis and a critical intellectual discourse, in terms of introducing new concepts and attitudes, must take place (Bourdieu cited in Mihai, 2016, p. 31). The first condition, the outdated approach to disability, was reflected in an urgent need to adopt a new human rights disability paradigm which took the form of CRPD. As a normative document it was ratified by post-Soviet states but in the face of continuing 395

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challenges of social and economic transformations these same governments find it difficult to prioritise disability rights in practice. Therefore, as the expert from Ukraine states, ‘The political tasks are the first, not the rights of persons with disabilities, as citizens’ (UA). In a globalised world, values are contagious. The idea burgeons that, ‘All human beings belong to the same society and are entitled to the same rights’ (Seita, 1997, p. 471). Moral consensus with human rights based disability approaches activates people, and, first of all, persons with disabilities, their families and organisations to pursue changes declared in CRPD. Often CSOs are the most active agents of change and they put efforts to implement reforms, which would bring positive changes into daily lives of persons with disabilities. On the other hand, governmental bodies in official reports on CRPD implementation tend to exaggerate their own achievements. Even without the intention, a deceptive picture is created, as, ‘A reliable way to make people believe in falsehoods is frequent repetition, because familiarity is not easily distinguished from the truth’ (Kahneman, 2011, p. 62). The experts’ similar assessment of the situation of persons with disabilities in post-Soviet countries and trends to embellish this situation in the countries’ official reports, indicate that the post-authoritarian societies meet similar challenges of social transformation. Among them is the formation of an authentic and critical discourse on disability rights. This is the second condition, necessary in order to plan, implement and monitor positive changes in the disability field. Such discourses must include various stakeholders, from persons with disabilities themselves to the representatives of government whose decisions shape social policies. The post-Soviet disability discourse, as our research shows, is fragmented and focuses on separate fields which reveals a lack of a holistic understanding of persons’ with disabilities lives. The very notion of an informant, ‘We don’t know how to call it [that, what happens at present]’ (UA) illustrates the lack of authentic discussion. There is, however, a possibility that a certain imitation of CRPD implementation, evident from our research, incorporates actual re-learning to act differently in a new disability field. Gradually, backed by international requirements and CSOs activities, this may change the way persons with disabilities are treated in post-Soviet countries. Along with this learning by imitation, the awareness that, ‘human rights law as moral law and as ideology is not only (…) a reflection of global and domestic power relations, it is also a tool for social transformation’ (Degener, 2016, p. 20) might enhance the overall progress of the post-Soviet societies.

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30 SWEDISH DISABILITY ACTIVISM From welfare to human rights? Marie Sépulchre and Lars Lindberg

Introduction Sweden is often considered an exemplary welfare state characterised by generous and universal social benefits (Esping-Andersen, 1990). There is therefore a tendency to assume that persons with disabilities living in Sweden are particularly well off compared to persons with disabilities in other countries and, with regard to the disability movement, Hurst (1995, p. 530) argued that: This [i.e. the welfare services in the Nordic countries] has bred a comparatively ­comfortable, passive body of disabled people whose organisations are well-funded and consulted by the state and who, because of their individual situation, do not have the impetus to demand change. In the same vein, Shakespeare and Watson (2001, p. 552) claimed that, because of the existing welfare benefits, persons with disabilities in the Nordic countries are ‘lacking radicalism and a positive identity’. These observations suggest that the Swedish disability movement is generally content with the status quo and has had a consensual relationship with the state. However, a closer look at the history of the disability movement in Sweden and at the current situation tells us a different story. Referring to Wright’s (2009) theory of social transformation, we argue in this chapter that the Swedish disability movement has used a combination of strategies to challenge the exclusion of persons with disabilities and claim the right to participate in society. Wright (2009) distinguished between ruptural, interstitial and symbiotic strategies of social transformation. ‘Ruptural strategies’ aim at replacing existing institutional structures with new ones, which involves direct confrontation with the state. By contrast, ‘interstitial strategies’ envision social transformation by building ‘new forms of social empowerment in the niches, spaces and margins’ (Wright, 2009, p. 211) of the existing social structure. Interstitial strategies propose innovative solutions and, although they do not directly seek drastic transformations, they, ‘potentially constitute a key component of enlarging the transformative scope for social empowerment in the society as a whole’ (ibid.). Finally, ‘symbiotic strategies’ are used by activists seeking transformation through reforming the institutional 398

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structures in collaboration with the establishment (Wright, 2009). Drawing upon this theoretical lens, this chapter traces the history of the Swedish disability movement and points at the differences within the movement and at the changes that have taken place in the movement over the years in the struggle for citizenship of persons with disabilities in Sweden. This chapter is organised according to four historical periods. We start by shedding light on the first Swedish disability organisations, which were founded during the second half of the 19th century in a spirit of charity, education, rehabilitation and self-help. Although these organisations do not constitute a social movement as such, they were a first type of mobilisation of/for persons with disabilities and form the context in which the disability movement emerged. Second, we examine how the Swedish disability movement grew out of initiatives of some disability activists who politicised the notion of disability at the end of the 1960s and in the 1970s, and demanded social transformation. We then consider how disability activism became an established movement in the 1980s and 1990s and underline the influence of international ideas and initiatives, including the Independent Living philosophy and the 1981 International Year of Disabled Persons. Finally, we move to the 2000s and 2010s and analyse how, leaning on the Swedish legislation and the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the contemporary Swedish disability movement struggles to resist welfare cuts and promote the rights of persons with disabilities. For each period, we consider the societal context in which disability activists engage and point at the different strategies adopted by the movement. When possible, we point at similarities and differences between the Swedish disability movement and its British and American counterparts.

1860s–1950s: Establishing organisations for/of persons with disabilities Established during the second half of the 19th century, the first Swedish disability o ­ rganisations mark the beginning of a civil society mobilisation around the issue of disability. In 1868, the organisation of the Deaf was founded, followed by the organisation of the Blind in 1889 and the organisation of persons with mobility impairment in 1923 (Bergval & Sjöberg, 2012). From the 1940s on, the number of disability organisations increased steadily with, for ­example, the foundation of the Swedish Diabetes organisation in 1943, the Rheumatic ­organisation in 1945, the national federation for Asthma and Allergies in 1956, the organisation of Children, Youth and Adults with Learning disability (Swedish acronym: FUB) in 1956, the Neurology organisation in 1957, the Psoriasis federation in 1963 and the federation for social and mental health in 1967 (Bergval & Sjöberg, 2012). These first disability organisations were impairment-specific and usually started in the context of schools and rehabilitation hospitals. Some were founded by persons with ­d isabilities while others were initiated by teachers or physicians, or by parents of persons with disabilities (Bergval & Sjöberg, 2012). Their main purpose was to provide mutual ­support, access to work and economic security for their members (Bengtsson, 2005) as well as access to assistive technology, such as wheelchairs and adapted cars (Berg, 2007). They were funded through membership fees as well as private donations and by money collected by the Red Cross and the Swedish Scouts Federation on Election Day. These latter practices point at the charity aspect of the early disability organisations. In 1942, the Collaboration Committee for People with Partial Work Capacity (in ­Swedish: Samarbetskommittén för partiellt arbetsföra) was created. This first cross-­d isability umbrella organisation brought together four disability organisations: the organisation of the blind; the organisation of the people with lung diseases; the organisation of people with 399

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­mobility ­impairment; and the organisation of the Deaf, around the issue of vocational training and work. This Committee later changed its name into the ‘Disability Federation’s Central Committee’ (Swedish acronym: HCK) and then into the ‘Swedish Disability Rights Federation’, which currently consists of 41 organisations and is one of the main actors in the disability movement (Funktionsrätt, 2018). While some early disability organisations were represented by non-disabled p­ rofessionals, others were led by persons with disabilities and Bergval and Sjöberg (2012) noted that the type of leadership could shift from a period to another. For example, the Organisation of People with Personal Injuries (RTP) was founded in 1946 by Ellika Ljunggren, who had ­impairments following polio. A few years later, the organisation chose a non-disabled ‘­person of importance’ as its chair to increase the organisation’s status, before opting again for a disabled chairman in the 1970s (Bergval & Sjöberg, 2012). A similar scenario happened at the organisation of persons with mobility impairment (today named Federation for Participation, Determination and Freedom of Movement, Swedish acronym: DHR), which chose to be represented by a (non-disabled) member of parliament in 1955, in order to increase its influence in the political arena. However, over the years, the members of DHR found it problematic to be represented by a non-disabled person and the organisation formally decided that the majority of the organisation’s representatives should have the experience of disability by the end of the 1990s (Berg, 2007). The changing decisions concerning the ­representation of disability organisations suggest that the first Swedish disability organisations were a mix of organisations for and of persons with disabilities, according to Oliver’s (1990) typology. In sum, the first disability organisations in Sweden were created in the 19th century, with the aim of providing mutual support and promoting the participation of persons with ­d isabilities in vocational training and work. These organisations were underpinned by a l­ogics of charity and were often represented by non-disabled people. Although these ­organisations sought to improve the living conditions of persons with disabilities, they did not bring forward a vision of social transformation by claiming equal participation for p­ ersons with disabilities. This changed drastically towards the end of the 1960s, when activists launched a new perspective on disability.

1960s–1970s: Taking control over disability organisations and politicising the notion of disability The beginning of the Swedish disability movement can be situated at the end of the 1960s, with the publication of Vilhelm Ekensteen’s (1968) debate book entitled On the Backyard of the People’s Home. This debate book argued that persons with disabilities were being ­excluded from the ‘People’s Home’, which was a commonly used metaphor to describe the social-­democratic vision for society in Sweden, and demonstrated that the difficulties faced by persons with disabilities were largely created by inappropriate welfare measures and ­d iscriminatory attitudes. Importantly, Ekensteen (1968) underlined the state’s responsibility to provide welfare measures and listen to the voice of persons with disabilities who, he claimed, were experts of their own needs. Moreover, rejecting the taken-for-granted idea that persons with disabilities form a special category, Ekensteen (1968) argued that the difficulties faced by persons with disabilities are not unlike the difficulties of people with social or economic problems in that they can be alleviated by state intervention. He proposed thus a symbiotic strategy of transformation as he envisioned change through reforms in existing

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welfare arrangements. Yet Ekensteen’s (1968) debate book went further than asking for reforms with regard to disability benefits because it also included a fundamental critique of the status quo and aimed at transformations concerning the whole society. Everyone says to be striving for a better society. A better society must, in contrast to the present society, be a society where even the handicapped [sic] can live a normal life. I believe that anyone who wants to help improving society must act in solidarity with all people, collectively, and with respect for their will, individually. I therefore say: I don’t write about myself, not either about others, I write about us. (Ekensteen, 1968, p. 9, authors’ translation) This claim includes an element of a ruptural strategy of transformation because it proposes a new society. Finally, Ekensteen (1968) adopted an interstitial strategy of transformation by calling for a new type of disability organisation controlled by persons with disabilities. This led to the foundation of the organisation Anti-Handicap (in Swedish: Anti-Handikapp), which introduced a new definition of disability. Anti-Handicap is not a new conventional disability organisation because AH starts from a definition of handicap [sic] as a social and not a physical phenomenon. (Anti-­Handikapp, 1970, p. 7, authors’ translation) Rather than targeting the rights of people with a specific type of impairment, the radical perspective adopted by Anti-Handicap aimed to struggle for all people facing ‘disability’ and transform society. This vision reminds of the social model of disability formulated by the British disability movement, and spelled out by Oliver (1996), which criticised the medical understanding of disability and argued that disability occurs when society is not adapted to the needs of disabled people (UPIAS, 1976). Similarly, the organisation Anti-Handicap criticised the fact that persons with disabilities were considered as passive objects of care and charity and that the established disability organisations did not represent their interests (Anti-Handikapp, 1970). After a decade of activism, Anti-Handicap dissolved and its members joined older disability organisations, which, by then, had taken on board the politicised version of disability and were increasingly represented by persons with disabilities. These developments suggest that the innovations brought by the interstitial transformation strategy of Anti-Handicap led to changes in the existing disability organisations and, consequentially, the creation of a disability movement claiming the right to participate in society on an equal basis with others. Thus, in contrast to Britain, where the disability rights movement developed in opposition to o ­ rganisations for persons with disabilities (Oliver, 1990), and in contrast to the United States of America (USA), where it developed from grass-roots activism into a civil rights movement (Anspach, 1979), the Swedish disability rights movement built on ‘traditional’ disability organisations, which gradually changed and became controlled by persons with disabilities. Moreover, the financial situation of the disability organisation changed in the 1960s with the introduction of government funding for disability organisations, which enabled these organisations to stop being reliant on charitable donations. This was an important change as the fundraising campaigns for disability organisations had been criticised by voices within the disability movement and 1977 was the last year that funds were raised on Election Day (Berg, 2007, p. 96).

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The adoption of the politicised view of disability by traditional disability organisations was formalised, when the Disability Federation’s Central Committee (Swedish acronym: HCK), published its first programme for disability politics stating: Handicap [sic] is to a large extent a consequence of shortcomings in society. Many handicaps can therefore be eliminated. This is done by changing society. (HCK, 1972, p. 3, authors’ translation) Thus, in line with Ekensteen’s (1968) ideas, HCK stated that disability should be viewed in relation to society. This perspective was consecutively adopted in policy documents and theorised as ‘the relational model of disability’ in the Nordic countries (Tøssebro, 2004). To compare with the disability movement in the United Kingdom (UK), HCK’s ­programme shares similarities with the often-cited Fundamental Principles of Disability, which was published by the British Union of the Physically Impaired Against Segregation (­U PIAS) and defined disability as ‘a particular form of oppression’ (UPIAS, 1976: 14). However, although both HCK’s and UPIAS’ definition of disability stress the importance of society for understanding disability, they also reflect different styles of political activism. ­Disability is regarded in terms of societal ‘shortcomings’ in the Swedish version and as a form of ‘­oppression’ in the British version, which suggests a less confrontational type of activism in the Swedish case (Berg, 2005). Indeed, the Swedish disability rights movement was established as dialogue partner of the state through its federation of organisations, following the model of trade-union organisations in the Swedish labour movement (Lindberg, 2011). This arrangement is typical of civil society in Sweden, where citizen associations have ­generally been involved in discussions concerning the government of the state, regions and municipalities as well as in public investigations (Micheletti, 1995). Hence the common view that the Swedish disability movement mostly uses symbiotic strategies and has a consensual ­relationship to the state. However, while it is true that the Swedish disability movement has sought to improve the conditions of persons with disabilities through symbiotic strategies, we highlighted in this section that the movement also proposed more radical ideas of social transformation and advanced a politicised understanding of disability. Besides the new perspectives promoted by Ekensteen (1968) and Anti-Handicap, ‘the normalisation principle’ had a great influence on disability politics in Sweden (Hallerfors, 2003). This principle was first formulated by Bengt Nirje, who was ombudsman for the ­organisation FUB (the organisation of Children, Youth and Adults with Learning disability) and argued that persons with learning disabilities should be given the possibility to live a ‘normal life’ in mainstream society (Grunewald, 2008). Like Ekensteen (1968), Nirje criticised the living conditions of persons with disabilities residing in large institutions and their inputs contributed to shaping one of the main disability reforms in the latter half of the 20th century, i.e. the closure of large residential institutions. These reforms were influenced by the voices of the persons with disabilities and state bureaucrats (Grunewald, 2008). However, while the normalisation principle has been crucial in the process of deinstitutionalisation, the disability movement led by persons with disabilities has mostly formulated its claims in terms of equality and full participation and demanded that society would be designed ‘for everyone’ (HCK, 1972). The disability movement pushed forward various issues relative to increasing the c­ itizenship rights and participation of persons with disabilities. However, some activists r­ emarked that the movement tended to be centred around men with disabilities (­Hugemark  & Roman, 2007; Sjöberg, 2010), which parallels the situation in other countries, e.g. in the UK (Morris, 402

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1992) and Australia (Meekosha & Dowse, 1997). Barbo Carlsson, a Swedish disability activist, wrote the following about her experience as a disabled woman: That with being oppressed. To be an object. To be unworthy – not counting. To be considered as nice and funny when it suits – when it becomes serious then someone else takes over. To not have trust. To be exotically disabled or exquisitely feminine. (­Carlsson, 1976 cited in Sjöberg, 2010, p. 109, authors’ translation) As Sjöberg (2010) argues, the problem was not that there were no women in the d­ isability movement, but that the movement did not adopt a gender perspective on its questions nor saw gender as political question. However, some disabled women highlighted their ­particular ­situation and sought to have a voice in the growing Swedish disability movement, as ­suggested by the quote above. In sum, in the 1960s–1970s, some radical disability activists argued that disability was mainly a political issue and a problem of social exclusion. Voices from the disability ­movement and disability organisations asked for more adequate socio-political measures and the closure of large residential institutions. This section has argued that the nascent disability movement used ruptural, interstitial and symbiotic strategies of transformation as activists envisioned a new society, proposed innovative ways of struggling for disability and sought to reform welfare provisions respectively. During the next two decades, the Swedish disability rights movement would become stronger and incorporate key ideas of the Independent Living Movement.

1980s–1990s: Developing as a strong disability movement and getting inspiration from the Independent Living Movement The year 1981 was proclaimed the International Year of Disabled Persons (IYDP) by the United Nations General Assembly and was an important impetus for disability movements in many countries around the world (Charlton, 2000). It established firmly that disability was a question of equality, participation and rights. The theme of IYDP was “full participation and equality”, defined as the right of persons with disabilities to take part fully in the life and development of their societies, enjoy living conditions equal to those of other citizens, and have an equal share in improved conditions resulting from socio-economic development. (United Nations, 2003) In Sweden, the disability movement organised large campaigns and demonstrations during the IYDP (Bergval & Sjöberg, 2012), which points at the use of ruptural strategies by the movement. Moreover, 1981 was the year that Swedish sign language was officially recognised following a long struggle of the organisation of the Deaf to counter the primacy of oralism (Bengtsson, 2005). The IYDP contributed to putting disability politics higher on the political agenda and, the following year, the Swedish parliament adopted the first national plan of action for ­d isability politics (Bergval & Sjöberg, 2012). In Sweden, when new legislations and ­policies are ­prepared, the government appoints a government commission to investigate the issue at hand. The reports and policy proposals produced by the government commission then go through a ‘remiss procedure’, i.e. they offer the stakeholders of the legislation or p­ olicy the possibility to provide comments on the proposals (Lundberg, 2012). The disability 403

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movement, which is officially recognised as a stakeholder of disability issues, participated in the formulation of the disability policies. It thereby adopted a symbiotic strategy of transformation because it promoted the rights of persons with disabilities through participation in the governmental consultations. As mentioned in the previous section, Sweden made drastic changes with regard to ­welfare provisions by closing down large residential institutions – which targeted mainly people with intellectual impairment and mental disorder – between 1970 and 1985 (­Lindqvist, 2000). This deinstitutionalisation process also concerned people with severe physical impairments who lived in residential institutions and whose bad conditions had been highlighted by Ekensteen (1968). From the closure of the residential institutions it followed that many persons with disabilities moved into the community and needed services at home. Some people were offered ‘home care’ and received services by staff coming to the person’s home. Additionally, a series of ‘service apartments’ were built so that young people with severe physical impairments could live in the community. Service apartments implied that a number of persons with disabilities lived in their own apartments but in the same building and shared a team of assistants (Berg, 2007). This was an improvement compared to earlier forms of support but it was a limited project and only a few municipalities offered such service apartments. Moreover, the disability organisation DHR criticised the fact that this project was financed by a national fundraising campaign, claiming that it was the municipalities’ responsibility to finance services for persons with disabilities and not charitable foundations (Berg, 2007). Another idea came forth. Inspired by the American Independent Living movement, Adolf Ratzka introduced the idea of personal assistance in Sweden. Ratzka was born in Germany but moved for his studies to the USA, where he hired assistants to get the support he needed on the university campus in Los Angeles and live according to the Independent Living ­philosophy (Berg, 2008). In 1973, Ratzka came to Sweden to collect data for his PhD. This took more time than planned and, when his stipend ended, Ratzka applied for social services in Sweden. He was offered ‘home care’ or a place in a ‘service apartment’ but found that both these arrangements did not give persons with disabilities control over their lives since persons with disabilities could not decide when and who would deliver the services (Ratzka, 1982; Berg, 2008). Instead of the existing welfare provisions, Ratzka asked to get the money directly and organise his own staff, as he had done in the USA. In 1982, Ratzka launched the term ‘personal assistance’ in an article that he wrote for a journal of the Swedish disability movement, in which he compared the Independent Living types of support in California with the types of support available in Sweden. The most fundamental difference I see between the two systems is the user’s view of him/herself. The Californian user can directly influence his/her situation and considers him/herself as a subject. This can lead to better service and increased satisfaction and self-­ confidence. I see an expression for the Swedish view on the user in the commonly used professional title “home Samaritan”. According to the biblical story, the good Samaritan took care of a traveller who was lying on the side of the road with serious injuries due to a robbery. “Home Samaritan” implies then that the user is considered as a helpless, vulnerable victim, completely dependent for his/her survival on a temporary by-passer’s good will. (Ratzka, 1982, authors’ translation) Similar to Ekensteen (1968), who criticised the status quo of charity and the powerlessness of persons with disabilities in the late 1960s, Ratzka (1982) criticised the existing welfare 404

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provisions for being based on a principle of charity and preventing persons with disabilities from controlling their lives. Hence, it seems that the strategy of transformation adopted by Ratzka was ruptural and interstitial because he sought to break with the existing institutional systems as well as create innovative solutions. In 1983, Ratzka organised a conference in Stockholm and invited Ed Roberts and Judy Heumann from the USA, as well as Ken Davis and Neil Slater from the UK, to present Independent Living to a Swedish audience. At first, the Swedish disability movement was not convinced by these ideas because it had put much effort in organising ‘service apartments’ and because the philosophy of Independent Living, with its focus on independence, did not fit easily in the Swedish collective thinking (Berg, 2008, p. 30). Yet some Swedish disability activists were directly drawn by the idea of personal assistance and various Independent Living organisations were founded, first in Stockholm in 1983 (Stockholm Independent Living, STIL) and then elsewhere in Sweden. A pilot project started in 1987 based on a simple idea: instead of financing home support, the municipality would give the same amount of money directly to twenty STIL members, who would hire their own assistants. The project attracted the attention of the media and politicians (Berg, 2008, p. 40) and, consequentially, influenced the major disability reform of 1994. This reform consisted of a new legislation, i.e. the Act Concerning Support and Services for Persons with Certain Impairments (SFS, 1993, p. 387; Swedish acronym: LSS), stipulating several types of support including personal assistance, group homes, counselling, occupational workplaces etc. The process leading to the reform suggests that, at first, there was a tension between the established disability movement, which sought to improve the disability services through symbiotic strategies, and the newly created Swedish Independent Living organisation seeking to improve these services through interstitial strategies. The idea of personal assistance was then adopted by the wider disability movement, which confronted the state through a series of demonstrations and finally legislated in the LSS Act (Berg, 2007). This suggests that the disability movement used ruptural, interstitial and symbiotic strategies in the process leading to the legislation of personal assistance. As mentioned earlier, the Swedish disabled women voiced that the disability rights ­movement did not consider gender. In 1988, disabled women from Sweden, Norway and Denmark gathered at a conference to strengthen the position of disabled women and, in 1997, Swedish women built the organisation Forum – Women and Disability (in Swedish: Forum – Kvinnor och Funktionshinder). This organisation aimed to be a meeting place where disabled women could share their experiences and show the strength, knowledge and competence of the most invisible women (Wermeling, 2017). This was an interstitial strategy of transformation as disabled women created new platforms in the existing disability movement. Similarly, other groups of persons with disabilities found that their needs were not represented by the established disability movement and created organisations for e.g. young persons with disabilities or disabled LGBT people (Hugemark & Roman, 2007), which can be interpreted in terms of interstitial strategies of transformation. Overall, a general trend in the disability rights movement has been the increasing number of disability organisations, which led Sellerberg (1999) to suggest that ‘Soon there’ll be a society for every bit of the intestine’. This increase reflects the diversity of positions and visions of the disability organisations but implies challenges in terms of the unity of the disability rights movement (Hugemark & Roman, 2007; Sellerberg, 1999). Concerning knowledge production, disability research was established as a discipline in some Swedish universities in the 1990s. Söder (2013) argued that, during that period, ­d isability research in the social sciences consisted mainly of evaluative studies about de-­ institutionalisation and studies about the everyday life of persons with disabilities living in 405

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the community. In contrast to the UK, where disability research developed as the ‘academic wing’ of the disability rights movement (Thomas, 2004, p. 581), the Swedish disability research remained largely separated from the disability rights movement (Lindberg, 2016). While this is still a reality, this might be starting to change, as we will point out in next section. In sum, the Swedish disability movement played an important role in the d­ evelopment of alternatives forms of support in the community during and after the process of de-­ institutionalisation in the 1980s and 1990s. Inspired by the American and British I­ ndependent Living Movements, the measure of personal assistance was tested by Stockholm ­Independent Living (STIL) and was included in the disability reform of 1994. We suggested in this ­section that that the disability movement adopted mostly interstitial and symbiotic strategies of transformation by launching innovative ideas and participating in ‘remiss procedures’ ­respectively. Moreover, we pointed at the tensions between members of the disability movement who promoted different ideas concerning disability services or who did not find their particular situations to be included in the movement. Finally, while rupturial strategies were not prominent in the Swedish disability movement during the 1980s and 1990s, we noted that there were a few demonstrations to confront the state. In the next section, we will see how the Swedish disability movement continues to use a mix of strategies to promote the rights of persons with disabilities and resist cuts to welfare provisions.

2000s–2010s: Resisting welfare cuts and fighting for human rights At the beginning of the 21st century, disability politics was marked by the adoption of the CRPD, which was ratified by Sweden in 2008. This seems to have influenced the Swedish disability movement to frame disability more clearly as a human rights issue. For example, the human rights approach was explicitly adopted by Equally Unique (in Swedish: Lika Unika), a federation of six disability organisations, which was established a year after the ratification of the CRPD. The Federation was formed in 2009 to jointly act and advocate for the right to ­accessibility and participation in society for people with a disability. We do so from a human rights perspective. (Lika Unika, 2018) Similarly, the older federation of disability organisations, the Swedish Disability Rights ­Federation (in Swedish: Funktionsrätt), previously HCK, explicitly states nowadays that its vision is grounded in the CRPD. Our vision is a society for all, characterized by solidarity, equality and participation. Our goals are based on the UN-convention on the rights for people with disabilities, CRPD. (Funktionsrätt, 2018) Notwithstanding the shared vision of working to increase the full participation of ­persons with disabilities in society, the Swedish disability rights movement is heterogeneous. As  mentioned in previous section, the number of disability organisations in Sweden has increased dramatically during the past decades (Sellerberg, 1999; Carlhed, 2007), which has also increased the competition for members and for economic resources. Based on their study of the claims for redistribution and recognition put forward by various disability organisations, Hugemark and Roman (2007) identified tensions with regard to both access 406

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to material resources and recognition in terms of representation. Regarding the latter, they argued that the question of who can represent disability organisations has been debated e.g. in organisations created by parents of children with disabilities as the children had grown up and wanted to represent themselves. Moreover, the disability organisations have different agendas and the members of disability organisations interviewed by Hugemark and Roman (2007) distinguished between ‘old’ disability organisations that centre around the issue of accessibility, and ‘new’ disability organisations that tend to focus on specific diagnoses. This distinction reminds of Hughes (2009)’ distinction, with regard to the disability movement in the UK, between organisations of patients, based on a specific medical condition, and organisations of persons with disabilities, based on the social model of disability. In Sweden, the fact that different organisations focus on diagnoses and accessibility issues respectively, was clear when a number of disability organisations left the Swedish Disability Rights Federation and established the new federation ‘Equally Unique’. However, both federations frame their visions in terms of human rights. Despite the fragmentation of the disability rights movement, disability activists join forces concerning certain questions and two issues can be mentioned in particular: the struggle to resist welfare cuts, in particular with regard to personal assistance, and the struggle to amend the Swedish Discrimination Act of 2008 (Sépulchre, 2018). With regard to the former, personal assistance has been jeopardised by recent welfare cuts and a stricter interpretation of the notion of ‘basic needs’ in the law (Brennan et al., 2016). These cuts are legitimated by the argument that the personal assistance measure is too costly (Altermark, 2017), which is strongly criticised by Swedish disability activists who claim that personal assistance should be viewed as the right for persons with disabilities to participate in society on an equal basis with others (Sépulchre, 2018). The disability rights movement has organised various demonstrations and challenged the politicians to reverse the trend, suggesting a ruptural strategy of transformation as it involved the direct confrontation of the state. However, the number of persons who are granted personal assistance is decreasing, especially with regard to the group of people with severe mobility impairment (Swedish Social Security Agency [Försäkringskassan], 2015). With regard to the second main struggle of the 2000s and 2010s, the Swedish ­d isability movement organised campaigns and demonstrations all around Sweden to demand the ­addition of ‘accessibility’ as a form of discrimination in the Swedish Discrimination Act. It is worth noting that, contrary to the USA and the UK, Sweden adopted anti-­d iscrimination legislations only recently. In 1999, Sweden adopted its first anti-discrimination ­legislations, including the prohibition of discrimination on the basis of disability in the workplace (­Lindqvist, 2000). In 2008, the different anti-discrimination legislations were replaced by the general Swedish Discrimination Act prohibiting discrimination on the basis of ‘sex, transgender identity or expression, ethnicity, religion or other belief, disability, sexual ­orientation and age’ (SFS, 2008, p. 567). While the Swedish disability movement was not the main force behind the adoption of anti-discrimination legislations at first, it worked hard to introduce an amendment to the Swedish Discrimination Act. The law was eventually amended in 2014, and although it includes a series of exceptions, it created new possibilities to fight discrimination in court, which some Swedish disability rights activists regard as a useful solution to counteract the slow implementation of accessibility legislations (Sépulchre, 2018). Apart from the actions of disability organisations, the inequalities faced by persons with disabilities are tackled by the acts of individual disability activists who report cases of ­d iscrimination to the Discrimination Ombudsman, fight for their rights in court, write ­opinion articles and are active on social media. A notable initiative was the blog 407

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‘FullParticipation.Now’, which was launched by Erik Ljungberg in 2010, with the aim of putting disability on the political agenda (for an analysis of the blog, see Sépulchre, 2018). The blog, which was later published as a book (Ljungberg, 2011), gathered disability rights activists from various horizons around the common issue of increasing participation of ­persons with disabilities in society. Is a new blog really needed in the context of abundance of information in which we are currently forced to live? Yes, we are 12 people who are convinced of this and who will blog every day for five months and make an impact in a Sweden you may not know. It is about exclusion, discrimination and the fear that politicians in fact do not think that these are important questions at all. […] we will provide you with the truth. Without sugar. We demand Full Participation! Now! (Ljungberg, 2010, authors’ translation) As suggested by the quote from Ljungberg (2010), the disability activists engaged on the blog to bring disability to the attention of the politicians and the general public. Other recent initiatives suggest that Swedish disability activists increasingly use the law to struggle for social change. For example, the project ‘With the law as a tool’ (in Swedish: Med lagen som verktyg), focusing on the discrimination of persons with disabilities, and the project ‘From Talk to Action’ (in Swedish: Från snack till verkstad), focusing on the CRPD, both aim at strengthening the individual rights of persons with disabilities by carrying on lawsuits and thereby creating jurisprudence on the matter. Struggling for disability rights in court and through online media can be interpreted as interstitial and ruptural strategies of transformation as they are innovative and confrontational measures. Hence, although the disability movement still uses symbiotic strategies (e.g. by participating in ‘remiss procedures’), it seems that it has become weary of the succession of state investigations and national plans and seeks new ways of action. In spite of the fact that disability is increasingly framed in terms of human and civil rights in Sweden, disability research is lagging behind. In his review of the field of disability research, Lindberg (2016), who is an activist in the Swedish disability movement and independent consultant, observed that most research about disability was situated in the field of medicine, at the expense of research about the legal, socio-political and economic aspects of disability. Moreover, he noted that there is little contact between the disability movement and disability research in Sweden, and that few disability researchers have the experience of living with disabilities (Lindberg, 2016). However, this might change in the coming years as the Swedish Research Council for Health, Working Life and Welfare (Swedish acronym: Forte) announced a call for proposals focusing on disability research in September 2018, based on the views of several stakeholders, including the disability movement. Dag Hervieu, a Senior Research Officer at Forte stated that: We have collaborated with researchers, user organisations and The Swedish Agency for Participation (MFD). These contacts have helped us to identify research needs and priority areas for the call for proposals. (Forte, 2018) The fact that the Swedish disability movement seeks to put disability, understood as a social phenomenon, on the research agenda and encourages persons with disabilities to become academics can be viewed as a symbiotic strategy of transformation as aims to change the status quo by collaborating with the establishment. 408

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In this section, we argued that the 21st century Swedish disability movement adopted a combination of symbiotic and ruptural strategies of transformation by working with and confronting the state to grant full citizenship rights to persons with disabilities. We noted that, in recent years, the movement used human rights and anti-discrimination legislations as tools for action. Moreover, we pointed out that the Swedish disability movement seeks to influence disability research to examine the legal, socio-political and economic aspects of disability.

Conclusion This chapter traced the historical development of the disability movement in S­ weden and called attention to the different strategies used by the disability activists, which, b­ esides participation in welfare reforms, include innovative and confrontational measures. We ­h ighlighted three ‘big ideas’ adopted by the movement: the politicised view of disability; the Independent Living philosophy; and the CRPD. We suggested that the Swedish disability movement shares the radical vision of full participation and equality of the international disability movement although it expresses its claims in slightly different ways. Further, we noted that, like disability movements elsewhere, the Swedish disability movement currently seeks new ways to advance its claims in a context of welfare cuts. One new way consists of fighting for rights in court, which is a well-known strategy for disability activists in countries that a­ dopted anti-­ discrimination legislations years ago but a new development in ­Sweden. Further, we called attention to the fact that Swedish disability activists were e­ ngaged on s­ ocial media, which offers another way to be involved in the public sphere. Finally, we pointed at the role of the disability movement as a stakeholder in disability research. Overall, the aim of this chapter was to get a more nuanced understanding of disability activism in Sweden by tracing almost a century of activism to give an idea of some of the key developments and ideas.

Acknowledgments The authors wish to thank Birgitta Andersson and Maria Johansson for reading and ­commenting on various drafts of this chapter.

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Sépulchre & Lindberg Brennan, C., Traustadóttir, R., Anderberg, P., & Rice, J. (2016). Are cutbacks to personal ­a ssistance ­v iolating Sweden’s obligations under the UN Convention on the Rights of Persons with ­Disabilities? Laws 5(2), 23. Carlhed, C. (2007). Medicinens lyskraft och skuggor – om trosföreställningar och symbolisk makt i habiliteringen 1960–1980 [The power and shadows of medicine – about beliefs and symbolic power in the habilitation of 1960–1980]. Uppsala: Acta Universitatis Upsaliensis. Charlton, J. I. (2000). Nothing about us without us. Disability oppression and empowerment. Berkley and Los Angeles: University of California Press. Ekensteen, V. (1968). På Folkhemmets Bakgård [On the People’s Home’s Backyard]. Halmstad: Hallandspostens Boktrykeri. Esping-Andersen, G. (1990). The Three Words of Welfare Capitalism. Cambridge: Policy Press. Forte. (2018). Forte invests in research on functional impairment. Retrieved from https://forte.se/en/ news/forte-invests-in-research-on-functional-impairment/ on 20 October 2018. Funktionsrätt. (2018). Funktionsrätt Sverige [The Swedish Disability Rights Federation]. Retrieved from http://funktionsratt.se/om-oss/in-english/on 20 October 2018. Grunewald, K. (2008). Från idiot till medborgare. Stockholm: Gothia. Hallerfors, H. (2003). Normaliseringsprincipen. Intra. Retrieved from http://www.tidskriftenintra. se/resources/arkiv/ideologi/303normalisering.htm on 20 October 2018. HCK [Handikappförbundens Centralkommité]. (1972). Ett samhälle för alla. Stockholm. Hugemark, A., & Roman, C. (2007). Diversity and divisions in the Swedish disability movement: disability, gender, and social justice. Scandinavian Journal of Disability Research 9(1), 26–45. Hughes, B. (2009). Disability activisms: social model stalwarts and biological citizens. Disability & Society 24(6), 677–688. Hurst, R. (1995). Choice and empowerment – lessons from Europe. Disability & Society 10(4), 529–534. Lika Unika. (2018). Lika Unika. Retrieved from https://www.likaunika.org/Equally-­UniqueinEnglish. html on 20 October 2018. Lindberg, L. (2011). Organisering och mobilisering [Organisation and mobilisation]. In L. ­Lindberg & L. Grönvik (eds), Funktionshinderspolitik – en introduktion [Disability politics – an introduction] (pp. 101–122). Lund: Studentlitteratur. Lindberg, L. (2016). Forskningen som haltar [The research that is limping]. Stockholm. Lindqvist, R. (2000). Swedish disability policy: from universal welfare to civil rights. European Journal of Social Security 2(4), 399–418. Ljungberg, E. (2010). ”Full Delaktighet! Nu! [Full Participation! Now!”. Retrieved from http://­ fulldelaktighet.nu/?m=201005&paged=5 on 16 July 2019. Ljungberg, E. (2011). Full Delaktighet. Nu! 69 Blogginlägg om rätten att leva det liv du vill, oavsett funktionsförmåga. Stockholm: STIL. Lundberg, E. (2012). Changing balance: the participation and role of voluntary organisations in the Swedish policy process. Scandinavian Political Studies 35(4), 347–371. ­ ustralia. Meekosha, H., & Dowse, L. (1997). Enabling citizenship: gender, disability and citizenship in A Feminist Review 57, 49–72. Micheletti, M. (1995). Civil Society and State Relations in Sweden. Aldershot: Avebury. Morris, J. (1992). Personal and political: a feminist perspective on researching physical disability. ­D isability, Handicap & Society 7(2), 157–166. Oliver, M. (1990). The Politics of Disablement. Basingstoke: Macmillan. Oliver, M. (1996). Understanding Disability: From Theory to Practice. Basingstoke: Macmillan. Ratzka, A. 1982. “Hemservice - i Vems Regi? [House Service - in Whose Direction?].” Svensk ­Handikapptidskrift [Swedish Handicap Journal]. Retrieved from https://www.independentliving. org/docs3/ar1982.html on 3 April 2019. Sellerberg, A. (1999). ‘Soon there’ll be a society for every bit of the intestine’: the complexities of ­positioning disability in Sweden today. Scandinavian Journal of Disability Research 1(2), 86–98. Sépulchre, M. (2018). Tensions and unity in the struggle for citizenship: Swedish disability rights ­activists claim ‘Full Participation! Now!’ Disability & Society 33(4), 539–561. Shakespeare, T. and N. Watson. 2001. “Making the Difference. Disability, Politics and Recognition.” Pp. 546–64 in Handbook of Disability Studies, edited by G. L. Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, London and New Delhi: Sage Publications. Sjöberg, M. (2010). Bana Väg. Välfärdspolitik och Funktionshinder. Örlinge: Gidlunds Förlag.

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31 GENDERED DISABILITY ADVOCACY Lessons from the Girl Power Programme in Sierra Leone Emma Frobisher, Willem Elbers and Auma Okwany Introduction The disproportionate marginalisation of persons with disabilities by type and severity is accentuated for young persons with disabilities, and girls in particular, because as noted by Gilligan (2016) they often have fewer opportunities and are more dependent on their families and caregivers. Disability is profoundly gendered and the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) recognises that women and girls with disabilities ‘are often at greater risk, both within and outside the home, of v­ iolence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation’ (UN, 2006, p. 3). This is the case in the West African country of Sierra Leone, where most young p­ ersons with disabilities commonly face exclusion in both the public and private arena. Malinga and Gumbo (2016) note that non-governmental organisations (NGOs) and civil society organisations (CSOs) can and do play an important role in raising disability awareness and promoting inclusive policy and practice through advocacy, even in contexts of widespread socio-economic insecurity and constrained state supported social services. However, persons with disabilities (including youth) are also activists in changing their situations (Morley & Croft, 2011). Numerous scholars within the United Kingdom (UK) have highlighted the issue of ­d iversity within the Disabled People’s Movement (Campbell & Oliver, 1996; Dodd, 2014). This lack of diversity is consistent with the global politics of knowledge production in which northern scholarship dominates disability literature generally and disability advocacy specifically, thus obscuring contextual accounts. According to Mohamed and Shefer (2015, p. 3), despite an emergent literature predominantly in Southern Africa, overall in the continent, there is a paucity of studies on disability and even fewer studies of disability from a gendered perspective. This gap in literature undoubtedly extends to disability activism highlighting the need for a convergence of disability, gender and diversity of identity in context. We draw on this to highlight the role and importance of intersectionality (Crenshaw, 1989; 1991) ­because of diverse shifting ways in which disability intersects with gender, income levels and spatial location to create compounding forms of marginalisation for women. Females with disabilities are overrepresented among the poorly educated, un- and under-employed, 412

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and those living in poverty (Emmett, 2006; Gershick, 2000; World Health Organisation [WHO] & World Bank, 2011). The greater impact on females is because of intersections of ability with gender and other sources of social disadvantage including class and spatial location. For female children and youth, age is an additional source of disadvantage due to the subordinate location of young people in social relations. In this chapter, we add to the emergent literature in the continent on disability generally and gendered disability specifically with a particular focus on disability advocacy by examining how advocacy strategies address multiple identities. Drawing upon qualitative research conducted in Sierra Leone, we examine the efforts of a local NGO, One Family People, which, as part of an international gender advocacy campaign called the Girl Power ­Programme (GPP), also sought to make the project relevant to girls with disabilities. We focus on the question of whether, and how, the GPP was beneficial to girls with disabilities. In the first part of the chapter, we review the literature on advocacy in relation to disability. In the second section we discuss the disability context and methods used in the study. The third section introduces One Family People and the GPP. In the fourth section we identify three main ways in which the GPP was relevant to girls with disabilities and also highlight limitations of the approach. In the concluding section, we summarise and discuss the key findings.

An intersectional perspective on disability and advocacy We define advocacy as a ‘wide range of activities conducted to influence decision makers at different levels’, with the overall aim of combatting the structural causes of poverty and injustice (Barret et al., 2016, p. 15). In the literature on disability advocacy in the global South, there are several recurring themes. A range of authors (Philips, 2009; Zhang, 2017) have ­examined the emergence, development and nature of disability rights movements in different national contexts, often through a historical lens. Another recurring theme is the potential that international human rights instruments and particularly the CRPD offer for advocacy at the national level (Lord & Stein, 2008; Harpur, 2012). Several studies have examined the conditions under which alliances and collective action contribute to achieving advocacy ­outcomes (Miles et al., 2012; Chua, 2014; Hann et al., 2015). Another important theme revolves around the adverse effects of international donor funding on d­ isability ­advocacy and how dynamics of donor-recipient relations are present at different levels (­Wehbi, 2011; Meyers, 2014). In this chapter, we add to this literature by arguing in line with critical disability scholars (Kelly, 2010; Meekosha & Shuttleworth, 2009; Meekosha, 2011) on the imperative of giving attention to intersectionality as an important theoretical lens for examining advocacy on disability rights. Intersectionality theory originates from gender studies and has been used to analyse intersections of marginality on the basis that people have multiple, overlapping and interrelated identities (Crenshaw, 1989; 1991). Symington (2004, p. 1) defines intersectionality as ‘an analytical tool for studying, understanding and responding to the ways in which gender intersects with other identities and how these intersections contribute to unique experiences of oppression and privilege’. Cho et al. (2013) emphasise the importance of relational power analyses for intersectionality. It is thus important to heed the reminder by Bilge (2013) on the significance of locating intersectionality in its proper space, centred on social justice and activism. An intersectional approach is therefore useful for examining how marginalised groups use their positions at the intersections of overlapping categories as a resource for activism and resistance (Konstantoni et al., 2017). We find 413

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this framework particularly useful for analysing multiple interrelated challenges confronting girls with d­ isabilities. In many countries, girls with disabilities face exclusion on the basis of their age, gender and impairment (Wendell, 1989; Dhungana, 2006; Hirschmann, 2012). Addressing the root causes of these girls’ marginalisation therefore requires accounting for their ­overlapping multiple oppressed identities but also the institutions and processes that use identity to exclude and privilege. In Africa, a few authors have explored intersectionality and how it relates to ­d isability. In  South Africa, Moodley and Graham (2015) explore how gender, race, poverty and ­d isability interact to influence the wellbeing of women with disabilities. A few studies focus on young people’s agentic advocacy, for instance, Willemse et al. (2009) present an autobiographical narrative of a male, deaf, HIV positive, gay and poor youth and how he negotiates these diverse identities including spatial location in post-apartheid South Africa. Similarly, Morley and Croft (2015) show how, despite the association of disability with constraints and exclusion, the agency, advocacy and achievement in higher education of young people with disabilities in Tanzania and Ghana offered them opportunities for transforming their stigmatised identities. However, little focus has been given to various advocacy strategies by organisations working with groups with disabilities within the context of intersectionality. This is particularly so for young people where a perspective on intersectional discrimination and addressing it would be important in analysing axes of discrimination beyond the obvious ones to also include age. In the discussions in this paper, we extend this literature by examining the efforts of a local NGO in Sierra Leone which, as part of an international campaign seeking to empower girls, endeavoured to make their advocacy also relevant to girls with disabilities. We argue that in order to be effective, disability advocacy should take intersectionality into account. We also make an important caveat. Despite the importance of an intersectionality analysis to our understanding of multiple forms of discrimination, we are aware of critiques that have been levelled against the framework and its utility in addressing intersectional marginalisation. One criticism is that it still tends to be focused on identity but not on relations and processes that create inequality or oppression (Garneau, 2018, p. 9). Additionally, Chang and Culp (2002, p. 485) highlight the challenges of working with intersectionality from a methodological perspective by noting the difficulty of identifying intersections. In furthering theoretical and practical knowledge on the utility of an intersectional lens on disability and advocacy, our analysis proceeds from, and works within, these critiques of intersectionality. We aim to accomplish this by being reflexive and positioning girls with disabilities not as a fixed identity, but we show how diverse processes including community norms on ­d isability, spatial location and material factors, like poverty and access to transport, affect their ­meaningful participation in diverse spaces. By examining the work of one organisation, One Family People, we also analyse how intersectionality is subjectively experienced and how the role of different processes including participation are factors that impinge on the wellbeing and identity of female youth with disabilities in specific settings.

Background, context and methods Historically, disability inclusion has proved to be an obstacle for disability rights activists in Sierra Leone, and exclusion of persons with disabilities continues to pervade all f­acets of ­public and private life. In a recent survey of persons with disabilities in and around ­urban ­a reas in Sierra Leone, fewer than half of respondents stated that they were participating in their communities, with more associating their exclusion to discrimination from 414

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other community members than to practical issues like accessibility or distance to facilities (Trani et al., 2010). Persons with disabilities are persistently ostracised and constrained from active participation in society and young people in particular experience higher levels of violence. Disability studies has repositioned the exploration of disablement away from a medical discourse to one of social oppression and discrimination. These debates follow from the notion that disability is a social construct resulting from societal structures erected, sometimes unintentionally, due to entrenched attitudes and perceptions (Bohman, 2005; Hosking, 2008; Goreczny et al., 2011). Many persons with disabilities have internalised the negative attitudes and misperceptions about their disability and suffer from shame and a low sense of self-worth. The stigma surrounding disability is culturally entrenched especially in the rural areas, with a widely held belief that it is caused by a parent’s sin or the work of the devil (Powell, 2010). Having a child with a disability is thus a source of shame, and many families of girls with disabilities often hide them from public view. Data for the research from which this chapter is drawn was collected over a period of nine weeks from June to August 2016, in the capital city of Freetown and the surrounding districts. The study was qualitative and utilised several techniques including twenty-eight semi-structured interviews and eleven focus group discussions with between five and ten participants of the GPP in each group. These were members of the Victory-Girls, referred to as V-Girls (and boys as V-Boys). Overall, there were nine same sex focus groups discussions, five with V-Girls, four with V-Boys, and two mixed focus groups discussions. These were complemented by interviews with and ethnographic observations of One Family People (OFP) staff members, government personnel, village chiefs, civil society organisations and participants of the GPP in the study communities. Of the one hundred and thirteen research participants, twenty-one were girls with disabilities that took part in the GPP as members of the V-Girls. Some of the girls participated in focus group discussions with other girls in their community, as well as semi-structured interviews. The researcher’s position as a cultural and linguistic outsider – young, white, middle class, able-bodied female – certainly had an impact on the research which took place in Sierra Leone, a fragile Sub-Saharan African state. While many of the research participants have a disability, the researcher does not, and this added a further layer of distance ­between the researcher and her participants, especially given the vastly different cultural and ­contextual meanings of disability. There is a body of literature that points out the need for reflexivity during the research process to consider how one’s positionality might impact data ­collection and findings (Davis et al., 2000; Finlay, 2002). The researcher decided to live and ­socialise with the research participants throughout the research process to mitigate the initial ­d ifficulties of integrating in a way that was necessary for learning and adapting to the beliefs and behaviours of Sierra Leone. This living arrangement allowed the researcher to become familiar with the lives and experiences of the staff and the girls in the GPP. A degree of intimacy developed with the girls over time, and this helped significantly to build relationships of trust and brought deeper layers of understanding that would not have been possible if she had lived separately and interacted intermittently with the participants. To mitigate the challenges arising from her positionality, the researcher adopted an ­intersectional approach to the research. She paid particular attention to the gender, (dis) ability, age and spatial location of her participants, and formulated research questions and methods appropriate to the particular participants, and she interpreted the results from an intersectional perspective. This provided ‘an understanding of the issues that is closer to the lived experiences of the equality groups that you are interested in, thus allowing you to ­develop effective strategies to address them’ (Christoffersen, 2017, p. 2). 415

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One Family People and the Girl Power Programme OFP is a small locally-run NGO based in Freetown that was established in 2008. Their work can broadly be divided into two categories: day-to-day needs-based social work for persons with disabilities in the capital as well as wider-reaching and long-term advocacy ­outreach projects at the district level. OFP’s personal and frequent contact with this group and their strong local knowledge of disability issues at the grassroots level have cemented their ­reputation within the disability community. One government minister explained that OFP ‘are very close to my heart’, while a mother in Calaba Town also shared similar sentiments, noting: Some NGOs are coming, they talk, talk, talk, but they do not do anything. But One Family People, they come here, they speak to us, they encourage us, and whatever they say, they do it. In OFP’s early years, they suffered from a lack of sustainable funding, which made fundraising from foreign donors a major priority. While OFP’s core mission is disability work, key staff members are also feminists which allowed them to seize funding opportunities for gender related activities. This resulted in the partnership with International Child Development Initiatives, a Dutch organisation, who offered them the opportunity to implement the GPP. The GPP was a five-year gender advocacy project that ran from 2011 to 2015 with the objective of increasing the protection of girls against sexual violence, early marriage and teenage pregnancy and to improve their economic and educational opportunities. Like many countries in West Africa, Sierra Leone has patriarchal cultural roots that dominate social relations. Entrenched socio-cultural norms and values foster an environment in which significant gender inequalities exist, with girls and women having fewer educational and economic opportunities compared with those of boys and men. Women in rural areas have higher rates of illiteracy and marry at an average age of 15.5 years (Schroven, 2006). Teenage pregnancy has long been a problem in the country, with Sierra Leone ­ranking among the ten nations in the world with the highest teenage pregnancy rates in 2013 (­Denney et al., 2017). Sexual violence was widespread during the 1991–2002 civil war, and this practice continued into the fragile post-conflict climate where a lack of legislative and regulatory structures fostered a culture of impunity and stigma surrounding abuse that often shamed victims into silence (Schroven, 2006). The residents of Dwazark, a community on the outskirts of Freetown with a population of approximately 5,000 inhabitants, recalled that in the decade after the civil war there were two or three cases of rape per day. According to one OFP staff member, the GPP was ‘the right intervention at the right time’. The programme’s core strategy consisted of mobilising girls and enabling them to ­advocate for themselves. In the GPP, OFP set up a series of community initiatives that directly ­t argeted 2,704 girls and young women between the ages of ten and twenty-five in thirteen communities in the Western Area and Moyamba District. Two sets of activities were central in these initiatives:

Establishing V-Girls, MLPUs and V-Boys Extra-curricular life-skills training groups known as the Victory Girl clubs, or ‘V-Girls’, were established, providing an experience-sharing self-help platform for girls and young women and a forum to discuss the laws and rights to protection. Football, music, hairdresser 416

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training, dance and drama were among the activities available to the V-Girls, with initiatives such as the Forum Theatre offering space for awareness-raising of issues around sexual violence and early marriage via theatre for development performed in the communities. In addition, 1,000 parents and community leaders were targeted, with the formation of the Mothers-Led Protection Units (MLPUs) to train women in the communities to provide twenty-four hourly support for girls at risk of abuse, and the Service Providers’ Network to reinforce the protection of girls as the cases went through the justice system. Over time, OFP brought boys into the project, creating the V-Boys for boys and young men in the communities to learn about the laws around gender-based violence.

Legal awareness and capacity building OFP sensitised communities about the law while drafting a guideline of rules about harassment to engage with disabling norms underlying the problems that were pervasive in the communities before the initiation of the GPP. At the lobbying level, OFP facilitated ­d ialogue meetings between civil society and government stakeholders, engaging policy-makers by calling for better implementation of policies and laws for the protection of girls, and hosted capacity-building workshops of government professionals about the laws against sexual ­v iolence. Alongside this, the GPP offered training and support for civil society organisations to work more effectively to promote girls’ rights and bridge-building initiatives with representatives from the police to rebuild trust between communities and the police that had broken down since the civil war. At the time the GPP was implemented, Sierra Leone was seeing a collective push by donors, government, civil society and NGOs towards gender equality, and the GPP was one of a number of overseas-funded advocacy interventions to contribute to a changing attitudinal climate towards women and girls in the country.

Positive outcomes The findings reveal that local stakeholders look positively towards the GPP and its results. Every interviewee the researcher met with, from government ministers and Paramount Chiefs to participants of the GPP and members of the communities, reported the same feedback that the GPP contributed to increased knowledge in the communities on gender equality and helped to change awareness and behaviour on the rights of girls and women in daily life. The girls that participated in the GPP indicated that they felt better equipped to speak out for themselves against abuse, with one thirteen year-old girl exclaiming: Now when a boy touches my behind, I turn around and say, ‘Eh! Don’t you grab me! I know my rights!’ The focus groups with the V-Boys signalled a change in their thinking and behaviour ­towards girls, particularly regarding respecting girls and refraining from sex at a young age. The GPP encouraged girls to share their experiences, and the research found some evidence that this had an impact on the culture of silence and shame around speaking out. As noted by the Paramount Chief in Moyamba: Now communities are concerned, they are rejecting abuse, ignorance, those harmful practices against girls. 417

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Because of the project, girls were now being accompanied to the police station by MLPUs and there has been improved follow-up of reporting by the police and court attendance of civil society members to monitor cases and ensure that prosecution is not prematurely ­terminated by threats or bribery. In conjunction with numerous other gender and child rights lobbying efforts in Sierra Leone, the GPP pressured the government to take responsibility in addressing gender-based issues. Respondents pointed out that the GPP contributed to the instalment of magistrates in all fourteen districts in Moyamba and played a role in the government passing The Sexual Offences Act in 2012 to close the gaps in the law around gender violence.

Participation of girls with disabilities Although the GPP was designed for the rights of girls in general, OFP made a particular effort to ensure that girls with disabilities participated in all of the programme’s activities. When OFP staff entered the communities, they located girls with disabilities and actively encouraged them to participate in the GPP by becoming V-Girls, effectively extracting them from their metaphorical hiding places. They consistently reminded the girls that they are just like other girls, and can participate in activities and achieve the same as the other girls. They spoke with the families of girls with disabilities to emphasise the importance of education for their daughters. They ensured that participants with disabilities were involved at every event, demonstration and performance, and they made efforts to consider practical issues like building accessibility and the need for sign language interpreters at functions. They emphasised that all girls are capable of achieving their goals, frequently repeating the motto that ‘disability is not inability’, to boost the girls’ morale. At every opportunity, girls with disabilities were given the floor to speak out in support of the need for girls’ protection and empowerment, acting as project ambassadors for the GPP. In the communities, they consistently framed the girls not as ‘the disabled’, but as ‘girls’, to remove the focus from their disability. Girls with disabilities were given a platform to present themselves as eloquent and confident young individuals who are responsible and capable of standing up for their rights and taking the lead in a community initiative. The above raises the question of what the effects were of OFP’s efforts to ensure the participation of girls with disabilities throughout all phases of the project. During the research it became clear that the encouragement of girls with disabilities to take part in the project at its development, organisation and delivery stages produced three main kinds of positive effects, alongside the project’s intended outcomes in the field of gender equality: (1) it helped to ­increase girls’ confidence, their sense of self-esteem and (self ) advocacy skills; (2) it helped them build new social relationships and friendships with other girls, and (3) the girls’ ­involvement in the programme helped to sensitise communities and challenge the widespread misconception that disability equates to inability and restrictions. Girls with disabilities were more enthusiastic about these changes than the changes that occurred regarding gender equality.

Improved confidence, sense of self-esteem and (self) advocacy skills The girls with disabilities who took part in the GPP stated that participation helped to ­increase their confidence and their sense of self-esteem after years of internalising negative feelings about their self-worth, and helped them to develop their self-advocacy skills to a point that they began to defend and speak out for themselves in the face of discrimination 418

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about their disability. The act of participating in this project, regardless of the project’s content or objectives, has played a vital role in helping girls with disabilities grow in confidence, maturity and self-esteem. By taking part in the self-help groups and speaking out on issues of sexual violence and early marriage, girls with disabilities gradually learned how to speak out in a public forum. They learned new skills of leadership and teamwork and they found their voice, recognising that they, too, have the potential to contribute to discussions and decision-making, which significantly helped the girls to regard themselves more p­ ositively. ‘It helped us know who we are, how we really belong in society’, said one girl with a ­d isability about the GPP. Participating in the project helped to foster more constructive ­attitudes among those with disabilities who took part, including a participant who expressed the following: To change the mentality must have to start with ourselves. We have to change our own attitudes. We can’t just expect people to be coming to give us everything. Inclusion of girls with disabilities in the programme with their peers was empowering and boosted their self-image. Data collected from the interviews indicated that the girls who took part are less shy and less inclined to distance themselves from social situations, which they formerly believed were inaccessible to them because they were not worthy of joining in. A nineteen year-old girl with a severe impairment acquired as a result of childhood polio noted: Before I knew this organisation, I was ashamed. I thought when I talked, people would never even consider me. The staff repeatedly reminded the girls that their disability was not caused by sin, and that they were capable of joining in just like their peers. The deeply held sense of shame that often damages the self-esteem of persons with disabilities in Sierra Leone seems to have been significantly lessened among the girls who participated in the GPP. The notion of pride is incredibly important within advocacy and activism (Grimm & Pilkington, 2015), and by realising that their disability did not have to be such a barrier to their participation, their confidence and sense of self began to improve. By speaking out repeatedly on issues of sexual violence and early marriage in the GPP, girls with disabilities gradually learned how to speak out and articulate their frustrations related to their intersectional identities. Persons with disabilities are a frequent target for verbal abuse on the streets of Sierra Leone, but the girls who participated in the project indicated that they felt more equipped to speak out for themselves in the face of insults, as explained by one girl with a physical impairment: Before Girl Power, I would just keep my head looking down. But now if someone ­d iscriminates against me, I use this as an opportunity to defend myself and educate them! Participant observation data revealed that girls who had participated in the project carried themselves with pride and dignity in a way that is rarely seen from other persons with ­d isabilities in Freetown. In the project’s baseline survey, OFP noticed that there were no role models that ­existed to act as inspiration for girls with disabilities in the communities. Scholars who have 419

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investigated the impact of role models on individuals have highlighted their importance in provoking self-enhancement and inspiration (Lockwood & Kunda, 1997; Johnson et al., 2016). When OFP entered the communities to deliver the project, their staff with disabilities who led the workshops and discussions inspired and impacted the mind-sets of the girls with disabilities. Over the course of the project, the girls with disabilities themselves began to act as role models, in turn becoming a source of inspiration to their peers including girls with and without disabilities. Their status as role models was a part they played with pride, typified in the following statement from one of the project’s participants: Disabled girls were admiring us! They were thinking, ‘These girls are disabled and they are speaking out against sexual violence. If they can stand up and say ‘No’ to violence, then so can we!’ In the third year of the project, OFP created the Gold Champions after-school club for standout girls of the GPP, the majority of whom were girls with disabilities. The intention of the programme was to enhance their status as role models by training the girls to lead their own GPP self-help groups for girls in the communities, thereby becoming mentors themselves. Participation brought an opportunity to develop self-advocacy skills, a necessary pre-condition for activism if these girls are to fight for their disability rights in future.

New social relationships and friendships Participation in the programme also helped girls with disabilities to build new social ­relationships and friendships with other girls. The GPP provided girls with disabilities the opportunity to frequently interact with girls without disabilities, something which did not happen before. Participation at after-school clubs and recurring events with such interactions alleviated girls with disabilities’ sense of social exclusion and segregation from other young people. Friendships between girls with disabilities and girls without disabilities have been formed and they are allies in transforming mind-sets about persons with disabilities. Many of these friendships had continued at the time the research was undertaken, even though the programme had concluded. One girl with mobility impairment who lives in central Freetown was delighted by the fact that her new friends now defend and support her at school when other students insult her about her impairment: With Girl Power we have created a friendly relationship with them [girls without d­ isabilities]. Now when I am in trouble with people, they say, ‘Eh! Do not disturb her, she is our sister!’ Much of the discrimination that surrounds girls with disabilities is borne out of fear and ignorance, but the inclusion of girls with disabilities in the GPP has contributed to r­ educing the distance and social barriers that often exclude them. The reticence and stigma of ­being friends with persons with disabilities also seems to have decreased. Data from interviews with a cross-section of study participants suggest they are now regarded more as individuals and less defined primarily by their disability identity. Social norms that discourage friendships between persons with and without disabilities can often be more disabling than the d­ isability itself. Inclusion and social connections has undoubtedly improved the emotional and psychological wellbeing of the girls with disabilities, who were deprived of these things for so long. 420

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Sensitise communities Finally, the girls’ involvement in the programme helped to sensitise communities and c­ hallenge the widespread misconception that disability equates to shortcomings and ­d ifference. One of the most successful outcomes of participation of girls with disabilities in the GPP according to interviewees has been the sensitisation and change in mind-sets in the communities about persons with disabilities. To illustrate the extent to which social norms in Sierra Leone ­d iscourage friendships between people with and without disabilities, one schoolboy said that when he first visited the OFP office and saw persons with disabilities there: I wanted to run! I became shocked because I never knew this organisation was working for disabled people. I made up my mind never to go again. However, as a result of his participation in the GPP, he is now friends with the children he initially wanted to escape from, demonstrating the attitudinal shift that has occurred among those taking part in the project. The change in mind-set was also noted by adults as stated by one government official: Before I met One Family People, I was the same as everyone. I only felt pity for the d­ isabled. But since I met One Family People, my perception changed. I see them as being unique and they have lots to offer, but are not given the chance. For the first time, these girls were seen in a new light as eloquent and capable young rights-­ holders taking the lead in a community initiative tackling gender equality. This marked a stark departure from their previous conceptualisation merely as victims. Conceived to improve the rights of girls including girls with disabilities, an unintended outcome and consequence of the project has been disability sensitisation. Witnessing a group of girls with disabilities in this new way, being active alongside their peers, has helped to leave a symbolic contribution on audiences about what it means to have a disability. For many, it changed the way they perceived and related with persons with disabilities. The participating girls with disabilities were treated more as responsible and capable individuals, many for the very first time: ‘Being part of the Girl Power was the first time we got respect in our community’, noted one young woman in her early twenties with a physical impairment at Kissy Shell in Eastern Freetown. This elevation in status also occurred within their own families. Several girls with ­d isabilities who participated in the GPP reported that they had gained more esteem within the family setting. A young girl with a disability in Moyamba explained: My parents did not consider me before. Whenever there was a kind of decision-making, they would only consider my brothers and sister. It’s much better now. My father now trusts me to give me a key to the house. The project instigated the need for a change in attitudes towards persons with disabilities as reliable and responsible individuals. In this way, the GPP has facilitated the challenging of disabling social norms and negative stereotypes about persons with disabilities through inclusion of girls with disabilities in the activities of the programme and enabling the creation of allies among girls with and without disabilities. The shifts in constraining norms and beliefs about disability point to potentially transformative pathways for advocacy that was facilitated by these girls’ inclusion and participation. 421

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The importance of an intersectional approach The preceding shows how intersections of gender, age, socio-economic status and d­ isability create multiple layers of discrimination for girls in Sierra Leone, because as noted by ­Symington (2004) they work together to produce a distinct experience of marginality. ­Intersectionality is thus an important analytical tool for working across strands of identity as well as institutions and norms that use identity to exclude. By opening up spaces for girls with disabilities to re-position themselves as (self ) advocates, the GPP enabled the realisation of positive outcomes for these girls, playing an important facilitative role in opening the door to reconstructing misperceptions about disability, and thus can be seen as an exemplar of disability advocacy. In this section we argue for the need to strengthen the participation approach by building disability advocacy that is intersectional. This requires an intentional recognition of the ways that age, gender, income level and (dis)ability work together with other facets of identity, along with an engagement with the structures that exclude on the basis of identity.

Transport This research revealed the multiplicity of constraints that girls with disabilities were dealing with that hindered their full participation in advocacy activities. One such constraint was the practical matter of transportation. In the hectic pace of life in Freetown, transport is a major problem for persons with physical disabilities, because ‘poda-podas’ (minibuses) are hesitant to pick them up if it involves additional time waiting for them to disassemble their wheelchairs. This meant that the programme’s participants with physical impairments often arrived later to GPP events, and sometimes did not arrive at all, curbing their active involvement and meaning their voices were absent from the advocacy discussions. Intersectional work would require intensification of advocacy and engagement with the minibus drivers as allies, as well as with members of the community, local government and other stakeholders to resolve these and other systemic challenges.

Sexuality The GPP’s stated aims were the reduction of early sexual relationships, teen pregnancy and sexual violence. A key rationale behind OFP’s drive to include girls with disabilities in the advocacy project was their consideration that girls with disabilities are particularly vulnerable to abuse and exploitation while lacking information and access to services. Indeed, as the researcher grew to know the girls with whom she lived during fieldwork, it became evident that the girls with disabilities who participated in the GPP have a more nuanced and complex relationship to their sexuality, but that this risked being overlooked. In many cases, girls with disabilities are vulnerable to and succumb to relationships at a young age because they have been abandoned or ignored by their families, or viewed as asexual due to their disability. One girl in her early twenties wanted a relationship but bemoaned the fact that boys never showed her any attention because of the disability she had contracted as a result of childhood polio. Another V-Girl claimed that her relationship with her boyfriend and the father of the child she bore at age fifteen is sacred, as ‘he was the first person to ever show me love.’ High rates of teenage pregnancy among girls with disabilities are, in many cases, related to their marginalisation from the socio-economic, educational and health sectors. Furthermore, girls with disabilities will sometimes have (many) children to show that they are 422

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sexual beings, in an attempt to disprove the assumption that persons with disabilities are asexual and infantile (Murphy & Young, 2005; Nam, 2012). Alternatively, they might have multiple children at a young age, believing that their offspring will provide care for them (Majiet, 1996; Tepper, 2000). As one participant whose polio left her debilitated from the waist down, explained, ‘my son is my legs’ for household tasks, including bathing and shopping. Another reason for bearing children is the belief that children can earn more money from begging which is a dominant livelihood strategy for many persons with disabilities in Sierra Leone. A number of studies have identified a connection between disability and sexual and ­physical abuse (Alriksson-Schmidt et al., 2010; Mays, 2006), and this is consistent with the researcher’s findings from Sierra Leone. Referring to rape, a disabled V-Girl with in her early twenties explained: Some men think, since this person is a disabled, she will not be able to fight me. So, they just come in and go away. Clearly, the intersection of disability with other factors exacerbates their situation. This is consistent with studies that have found that women with disabilities are more likely to stay in abusive relationships because they have internalised negative attitudes about themselves or because they believe that a violent partner is better than none at all (Amalo, 2013; Peta, 2017). This points to the need for an intersectional approach to engage with these multiple dimensions of girls’ lives that highlights the heterogeneity of girls generally and girls with disabilities specifically. The intersectional experiences of girls with disabilities requires an ­intersectional approach which includes messages and strategies that are tailored to their ­specific vulnerabilities and pays attention to their articulated needs. Importantly, an ­intersectional approach also requires that interventions problematise the diverse and often disabling ­contexts in which these girls are located rather than focusing on the i­ndividuals themselves. Such an approach complements participation with transformative strategies, ­a llowing advocates to achieve full inclusion. One of the project’s success stories, for instance, is a girl with a severe physical disability who excelled in the GPP and rose to a leadership ­position, and who regularly spoke out to large audiences at the programme’s events. Since the project has ended, she is now studying at university, and is one of just twenty students in the country taking advantage of the government’s policy of free tertiary education for persons with disabilities. This was only possible because, alongside the project’s female empowerment advocacy messages, she was able to seek and receive a scholarship from a Western donor organisation to attend high school enabling her to continue her education and eventually join university. This highlights the importance of considering multiple intersecting dimensions of injustice including ability, class and spatial location, and how they come together to define marginality in different ways for different people.

Identity and beyond to a relational approach Disability is a widely heterogeneous term covering a broad variation in the type and severity of different impairments. In the GPP, girls with certain types of disabilities benefited more than others: girls with physical disabilities, for instance, were over-represented in the GPP, while girls with other types of disabilities, including speech and hearing impairments and severe learning disabilities, were under-represented or left out altogether. For more inclusive 423

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and effective participation, practitioners must adopt an intersectional approach that takes into account the heterogeneous nature of disability including identifying and providing support based on the differential needs which are gendered. In other words, by taking intersectionality into account, (self ) advocacy can be made more inclusive. Participation, when implemented with a deliberate focus on the awareness of the multidimensionality of marginalised identities, offers a transformative opportunity if practitioners are specifically cognisant of the unique and intersecting obstacles, differences, needs and perspectives of the participants that sit at the nodes of exclusion. Intersectionality signals the importance of forging new group identities and creating new alliances beyond a single issue, with the linking of the disability movement to the gender movement being just one example of such an alliance. Ultimately, group identities are vital for collective mobilisations for rights, r­ esources, and recognition, which can pave the way for new solidarities beyond disability alone (Della Porta & Diani, 2006). Overall, much has been accomplished in the GPP for girls with disabilities, especially when taking into account that it was designed for the rights of girls in general. Our analysis, however, also identified some important constraints and limitations of the GPP and showed how the marginalisation of girls with disabilities in the programme is intersectional and related to structural institutionalised powers and processes (see Hickel, 2014). We therefore assert that future advocacy can achieve even more by going beyond identity and agency to examine these social relations, institutions and processes that create inequality or oppression. We argue that truly transformative change for girls with disabilities must go beyond the inherent value of amplifying their voice and agency and changing (mis)perceptions about their ability. This requires efforts to also engage with and shift disabling gender and social norms as well as linkages with complementary efforts, including policies and projects that help communities and females specifically to overcome structural constraints that actively disempower them. The role of the state in addressing structural v­ ulnerability should not be obscured (Okwany, 2016; Penn, 2017). This is consistent with the contention that a critical starting point of intersectional inquiry must go beyond ­individual subjects and identity to engage with social relations and institutions of power (Cho  et  al., 2013; Garneau, 2018).

Conclusions and way forward This chapter has examined the advocacy efforts of a local NGO in Sierra Leone, which, as part of an international campaign seeking to empower girls, tried to make their work relevant to girls with disabilities as well. Taking an intersectional approach, we explored whether, and how, the programme was beneficial to and cognisant of the multidimensional lives of girls with disabilities. The findings affirm that disability is profoundly gendered and for females is associated with constraints including social discrimination and ­m arginalisation. The subordination of young people in social relations means that for female youth, age intersects with their gendered disability to accentuate their socio-economic marginalisation in life including in advocacy activities. We contend that looking at disability advocacy through an intersectional lens offers fresh insights and a new way forward for taking the participation approach even further, through greater recognition of the intersectional nature of disability. Indeed, findings revealed that despite the association of disability with constraints, discrimination and exclusion, the project had significant beneficial impacts. Notably, three kinds of positive effects for girls with disabilities were identified that were directly related to their participation in the advocacy activities. Firstly, the study showed 424

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that by involving girls with disabilities in activities that develop their self-advocacy skills, their participation contributed to an increase in self-esteem and self-confidence. Secondly, through sustained interaction between girls with and without disabilities, participation contributed to inclusion and the formation of new social ties. Thirdly, by giving girls with disabilities a public platform and framing them in a positive light, participation contributed to community awareness while inspiring other girls with and without disabilities. Where multiple identities are associated with interrelated mechanisms of discrimination, it makes sense for advocates working for different causes to join forces and strengthen their case. This points to the importance of cross-issue alliance building. While these findings show that gender advocacy can be made disability relevant and that it is possible to address multiple identities within a single advocacy campaign, we also highlight limitations, which have implications for effective disability advocacy, particularly in instances where there are constrained funding opportunities for disability-specific projects. Advocacy strategies are rooted in an understanding of what drives exclusion and identities and experiences are complex expressions of intersecting social forces and structural power relations. Thus, for advocacy to be more inclusive and effective, we draw on our analysis to argue that for programmes like the GPP, intersectional thinking must go beyond a focus on identity and increasing the agency and advocacy of girls, by offering pathways for examining the processes that shape the structural relations and processes that infuse and define inequality and oppression in socio-economic life.

Acknowledgements The authors would like to acknowledge the cooperation and assistance offered by Liliane Foundation and One Family People for making this study possible.

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32 ‘WE NEED NOT REMAKE THE PAST’ Rebuilding the disability movement in Toronto, Canada Melissa Graham Introduction Growing up, my world was small. Most days it was not much longer more than a few houses down the road. We lived on a dead-end row with field on two sides, and one of the Great Lakes resting patiently just a short walk below us. Our house was blessed with a large yard that looked back on one of those fields, far enough for a child to look out with great imagination and wonder what lay beyond the grass and trees. My world was smaller than most not just because I was a child, but because I was a disabled child, a child that travelled the outside in an electric wheelchair, and that was enough to make me a perceived hazard. The quest to travel beyond that dead-end was something of a struggle. I was in high school by the time I asked. I didn’t have a particular destination in mind at the time. I just wanted to know where I could go. There were not many sidewalks with curb cuts at the time and I had to do a lot of wheeling by the side of the road, but I was ready, and it felt so good. I can still remember how the sun felt on my skin, the sound of my tires on gravel, and the giddiness of feeling that I was finally alone. Except that I wasn’t alone. Without my prior knowledge, our neighbour took it upon herself to follow me in her car for several blocks. She wasn’t terribly subtle, and after a few blocks I pulled over, and in less polite terms than I care to admit, I asked her to stop following me. Her explanation, of course, was fear for my safety and fear for the safety of others, but she did turn around. That theme of safety, and that my disabled body and its devices as somehow a threat to that safety, has been a theme in my life. The irony in this particular story is the use of public streets as a political tool later in my life, but then and now the ableist perception of what safety means has encompassed so much more than that. I was fortunate to grow up in a town that had one-story public schools for both grade school and high school, and parents that insisted my education be no different from that of the other neighbourhood children. They recommended that the janitor in the grade school build wooden ramps with a ribbed rubber side for me to enter the school. I also remember the segregation. I remember doing physiotherapy when the other children learned sports, being told that teaching me music or art would leave the other children behind, and I also 428

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remember how I was made to use a newly installed accessible bathroom and removed from the culture of the girls’ bathroom. I could use the bathroom on my own, but there was still that ever-present concern for safety. Yet, still I saw limits to which safety did not extend. Safety did not make the teenage social activities accessible, the homes of my friends, the movie theatre, or most of the stores downtown. Safety put walls around me long enough for me to find a gap that I could squeeze though and move on. I tell you this not so that you know my story, but because my story is one of many such stories. I’ve heard it echoed back to me in the stories of other people who grew through disabled childhood in rural Canada, where the status quo may be shaken but rarely disrupted. I also tell this in attempt to begin to explain how I arrived at disability activism. While knowledge of disability history and social movements continue to serve as powerful tools in my work, those formative experiences in ableism and oppression, and my desire to tear at the boundaries I was born into, serve as fierce and persistent fuel to the progressive spirit. This fuel is not unique to me. A tool of the oppressed, it is the creation of persistent injustice that when properly fed and directed has the power to destroy that which created it.

The Toronto Disability Pride March We live in a time where disruption may seem like a consistent feature on the evening news, but it’s difficult to believe that one person can make such a change themselves, and many are discouraged from doing so, whether through fear of their own resolve or the belief that nothing they did would be enough. I’ve identified as a disability activist since 2007, and I still dwell on these concerns, but sometimes in the right moment, I know that I must move forward. When I founded the Toronto Disability Pride March (TDPM) in 2011, I didn’t have much in the way of actual resources. I was living on social assistance at the time, well below the poverty line, and I lived then as I do now in the slightly more affordable suburbs where getting anywhere meant paying for public transit. What I did have was community, and that drove me by principal and necessity to grassroots movement building, focusing on the intersections of disability with other forms of oppression, and the timing of movements in that era demanded a new form of leadership structure. The Occupy Movement was a global political protest that sprung up in in September 2011 in response to the Great Recession that began in 2008. In the American Occupy Movement there was documented participation of disabled people through Independent Living centres and disability action groups (Disability Action Center, 2011). Disabled people were on the front lines, facing tear gas, camping overnight, spending hours at large, outdoor political discussions known as General Assemblies (Lauby, 2011; Taylor et al., 2016). This despite the fact that those who were most marginalised were sometimes left out of the collective decision-making process, and that locations of these movements were often not accessible (Taylor et al., 2016; Lauby, 2011). It could be argued that in the United States of America (USA), disabled people were more profoundly impacted by the austerity measures that led to the Occupy Movement. The global Great Recession was started by banks inflating the housing market in the USA, those banks received subsidies while the resulting bankruptcies lead to the closure of hospitals and foreclosures on homes (Dupree, 2016). This was a time when ableism and sanism were new concepts to the broader leftist moment, and some ­activists saw an opportunity to bring those concepts into the organising of the Occupy Movement (Lauby, 2011; Moore et al., 2016; Taylor et al., 2016). 429

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In Toronto, the movement was centred around an encampment at St James Park, an urban public park that is owned by both the Cathedral Church of St James and the City of Toronto. At that time the focus of the movement was that the system as we knew it was broken, but it also provided an opening for organisers who were not normally given a platform in leftist social movements (Kirzner, 2011). There is little documentation on the Toronto Occupy Movement compared to its American counterparts, but from my perspective, until the day of the march, the only space for disability in that space was the accessible portable washroom stalls. The Occupy Movement is often remembered for its open mic structure and attempts at consensus building models exemplified through the General Assemblies, but it is also remembered for the communities it left out of the conversation. Like similar movements, it easily forgot the social movement history on which it stood, though it did awaken some disabled people into struggle (Moore et al., 2016; Taylor et al., 2016). The movement took a long time to consider the problematic concept of ‘occupation’, especially in a movement where the activists were primarily white settlers in origin and the voices and struggles of indigenous activists were mostly erased (Moore et al., 2016). The Occupy Movement also had a complicated relationship with police. Sometimes, the struggle led to conversations about police violence, but often police were brought in to those spaces because of sanism and intersections between sanism, racism and poverty as they played out in ‘occupied’ spaces (Moore et al., 2016; Taylor et al., 2016). It was in this complicated and messy setting that TDPM was born. A lot has changed in that time; we’ve grown from one person handing out handmade flyers and hoping a few ­people would show up, into an annual event organised by a small but dedicated team. ­However, if you look closely you can see the roots we grew from as we continue our work within the intersections of ableism, sanism and other forms of oppression. We continue to bring forth the most marginalised among us, providing a platform on which to speak on issues impacting each person and the communities they come from. We also operate our organising structure on a consensus model, and the challenges that consensus organising brings. TDPM held its eighth march in September 2018, but its status within the broader disability movement is still on the margins. The disability movement in Canada was born through similar kinds of organising that is now seen with TDPM, but circumstances have forced many of the remaining structures of that time to show more concern for their own safety, form hierarchal leadership structures and become specialised disconnected silos within the disability community. The Occupy Movement is now a part of our historical memory, and organisers of movement groups like TDPM are having to find new ways to navigate within and outside of disability movement spaces, which often have very different relationships to intersectionality and capital. In many cases disabled people are brought into movement building by focusing on issues that affect people on an individual rather than collective basis. This is hardly the fault of those organisations, who are simply attempting to empower their service-users, many of whom may never have been exposed to anti-ableist ideas. However, as Little (2010) suggests, while these organisations promote self-efficacy and collective efficacy among their disabled consumers, there is also a tendency within such organisations to blame those consumers for choices which may have led to negative consequences, presumably without consideration for possible external factors. The early social model of disability, on which many of these organisations are based, views paid work as key to the liberation of disabled people, but this perspective comes 430

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without consideration of the intersections of class and disability (Heath, 2015). As Graby (2015, p. 132) explains: The paradox of disabled people desiring to be included in the same economic system which is responsible for their exclusion in the first place, and whose values fundamentally privilege the ‘more able’. In this way the social model, which once was hailed as revolutionary, now serves to hold up existing norms, conformities, and oppression. This may also help to explain why some disabled people see participation in the workforce as their primary source of identity (Galer, 2012). This homogenisation of the disability movement is further reflected in policy, creating gaps in social change for disabled people (Kelly, 2010). As Prince (2016, p. 12) points out: [Talk] of individualism and consumers’ rights may well promote beliefs in personal experience and human agency and celebrate self-governing citizens; but, n ­ eoliberalism also individualizes responsibility and downplays structural determinants of living conditions. Prince (2016, p. 12) further points out the power these institutions hold through their ­connection to policy makers, which in turn co-opt these ideas to shape policy: Many Canadian disability groups look to federal and provincial governments, along with city governments, as defenders of human rights, providers of public services, and enablers of social inclusion. Instead, what happens is a form of pacification by government, where ideas are put forward with limited accountability for actual changes. Annexation of innovative ideas and critical discourses from community groups and movement organizations into traditional state discourses […] is more frequently ­interpreted as a classic tactic by government bodies to neutralize perceived threats and to manage challenges from outside groups. (Prince 2016, p. 12) As Spagnuolo (2016) describes it: Neoliberal governments have a tendency to shape the agendas of non-profit organizations through substituting core funding with highly controlled project-based funding that typically disfavors or eliminates equity-seeking advocacy work. TDPM has seen this co-opting by governments several times in its history, most notably with its support for a Canadians with Disabilities Act, which Canada does not have. Previously, I argued that the call for a barrier-free Canada was eventually picked up by Prime Minister Trudeau’s campaign (Graham, 2017). After the election, the conversation soon shifted into town hall meetings focused on disability and employment, while carefully avoiding the underlying issues that keep disabled people in poverty. In Ontario, there were attempts to similarly misdirect the public prior to the increase in the minimum wage in 2018. When some members of provincial parliament were suggesting that employers would not want to 431

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pay disabled people the new minimum wage and were harkening back to the days when sheltered workshops were more acceptable, I pointed out that: [disabled] people seeking employment are often blamed for their employment woes, but the reality is the job market is set against disabled people. Despite all the talk from governments about finding disabled people work, disabled people are still an often ­exploited and undervalued labor force, living in a system that would like continue to exploit us. (Graham, 2018, p. 43) These are just some of the consequences of a disability movement that is presented as far more homogeneous than the disability community itself. As Kelly (2010) has noted, the leaders of the disability movement in the global North are predominantly white and male, and this led the movement to reflect the concerns of that particular voice. [Emphasizing] employment, independent living, and local transportation whereas examples of advocacy seeking support for disabled parents, promoting community/­family models of care, demanding access to non-judgmental sexual support, a­ ddressing racism, sexism, homophobia and other forms of oppression within the disabled c­ ommunity and challenging discriminatory immigration policies in the global migratory system are less common. (Kelly, 2010, para. 5) Nishida (2016) and Mingus (2011) identified the alienation that is created when the movement is led predominately by white men focusing exclusively on ableism, leading some would-be participants to seek community in other marginalized groups because what is p­ resented by the disability community did not reflect intersectional experience. It is here that mainstream disability movements create further problems for themselves, when it b­ ecomes too difficult for disabled people to claim that identity, the movement can no longer sustain itself. It ­follows that to sustain the disability movement in Canada, the movement must ­concentrate its gaze on intersectionality, as TDPM attempts to do. This is sometimes referred to as d­ isability justice, changing the framework of organising against ableism to include a greater understanding of our bodies and minds, as well as understanding how struggles against ableism impact all of our movements for justice (Mingus, 2011). TDPM has at times been criticized for its own critiques of structures within social services, such as social assistance cuts, public transit woes and police brutality. Sometimes we are told that we should focus simply on celebration, but it is our willingness to resist the status quo that makes us stronger. In Canada, protests are often focused on reforms rather than challenging the status quo, but it is through confronting the system and ourselves that we create space to tackle elitism, create action-oriented decision-making processes, and confront our own assumptions to become better organizers (Spagnuolo, 2016). This work is hard to do and it takes energy and bravery to do well. At times it feels like we’re swimming upstream while trying to build allies with other movements intent on building within the constraints and exclusions on neoliberalism. Organising in this way means that the growth of our movement will be slow. To avoid the advocacy constraints of public funds, the march went without funding for many years, and was only supported by the private pockets of the organisers, and some generous in-kind donations. Recently we opened ourselves up to crowdfunding, and the response we received seemed like confirmation we are on the right path. 432

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In many ways we have moved past the Occupy Movement, by continuing to build in community and learn from the mistakes of the past. We’ve also learned to celebrate the history of those who came before us. In 2017, we established the Beverley Smith award, to honour the contributions of one of our organisers who had passed away the year before.

Conclusion We are still learning and growing with each passing march and making space for voices we did not hear before; there are still times when it is anticipated that we will respond to requests to speak with exclusion and elitism. We still struggle with concerns of police violence, and the contradictions of movement building within the capitalist settler society that we call Canada. In 2017 one of the speakers at TDPM was assaulted by police the day before the march. She still came to speak and march with us, even though we had a police escort. We continue to build solidarity with indigenous communities and strive to grow in a way that respects all communities and voices. We cannot heal the damage caused by neoliberal disability organising on our own, but we hope that our continued presence provides a light in the dark while our voices call to action. It takes strength the move beyond the path set out for you and the space you’re told to inhabit. Taking that step invites great possibilities of gathering, shifting perspectives and the combination of laughter and celebration blended well with justice and pride. Our marching has encouraged other marches over the years; perhaps it will encourage you as well.

References Disability Action Center. (2011). Join the Occupy Movement. Disability Action Center. 20 October 2011. Retrieved from https://actionctr.org/2011/10/20/join-the-occupy-movement/ on 15 ­November 2018. Dupree, N. (2016). My world, my experiences with Occupy Wall Street and how we can go further. In P. D., Block, A. Kasnitz, A. Nishida, & N. Pollard (eds), Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability (pp. 225–234). New York: Springer. Galer, D. (2012). Disabled capitalists: exploring the intersections of disability and identity formation in the world of work. Disability Studies Quarterly 32(3). Graby, S. (2015). Access to work or liberation from work. Canadian Journal of Disability Studies 4(2): 132–161. Graham, M. (2017). Trudeau’s ‘accessible Canada’ includes unpaid work. Socialist, 5 March 2017. ­Retrieved from http://www.socialist.ca/node/3264 on 15 November 2018. Graham, M. (2018). Employment & ableism. Our Times, Winter 2017/18, 43. Heath, B. (2015). “From each according to ability”? Capitalism, poverty, and disability. Canadian Journal of Disability Studies 4(2): 1–5. Kelly, C. (2010). wrestling with group identity: disability activism and direct funding. Canadian Journal of Disability Studies 3(4). Kirzner, E. (2011). The revolution in St James Park. NowToronto, 16 October 2011. Retrieved from https://nowtoronto.com/news/the-revolution-in-st-james-park/ on 15 November 2018. Lauby, A. (2011). Disability and the Occupy Movement [podcast]. 4 November 2011. Retrieved from http://www.pushinglimits.i941.net/?p=243 on 15 November 2018. Little, D. (2010). Identity, efficacy, and disability rights movement recruitment. Disability Studies ­Q uarterly 30(1): 1–17. Mingus, M. (2011). Changing the framework: disability justice. Leaving Evidence. 12 February 2011. Retrieved from https://leavingevidence.wordpress.com/2011/02/12/changing-the-­f rameworkdisability-justice/ on 15 November 2018.

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Graham Moore, L., Gray-Garcia, L., & Thrower, E. (2016). Black & blue: policing disability & poverty beyond Occupy. In P. D. Block, A. Kasnitz, A. Nishida, & N. Pollard (eds), Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability (pp. 295–318). University Sheffield, UK: Springer. Nishida, A. (2016). Understanding political development through an intersectionality framework: life stories of disability activists. Disability Studies Quarterly 36(2). Prince, M. (2016). Reconsidering knowledge and power: reflections on disability communities and disability studies in Canada. Canadian Journal of Disability Studies 5(2): 1–30. Spagnuolo, N. (2016). Political affinities and complex identities: critical approaches to disability ­organizing. Canadian Journal of Disability Studies 5(2): 72–97. Taylor, S., Hall, M., Lehman, J., Liebert, R., Nishida, A., & Stewart, J. (2016). Krips, cops and ­Occupy: reflections from Oscar Grant Plaza. In P. D. Block, A. Kasnitz, A. Nishida, & N. Pollard (eds), ­O ccupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability (pp.15–29). Dordrecht, Heidelberg, London and New York: Springer.

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PART X

Conclusion – the coming challenges and future directions

33 CAUSES AND EFFECTS OF CLAIMS FOR RIGHTS Why mainstreaming in Africa matters Kudakwashe Dube Introduction In order to understand the demand for rights by disabled people and the response from supply-side institutions, it is important to have an understanding of key themes in disability mainstreaming in international development aid. Disability mainstreaming is now imperative in development aid and part of the United Nations (UN) sustainable development agenda to ‘leave no one behind’ (Cobley, 2018). Thanks to the work of disability rights activists Chataika and McKenzie (2016), who note that global institutions, governments, local and global non-governmental organisations (NGOs) are required to include or mainstream disability in all processes of international development aid and programming. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) explicitly states that mainstreaming should be an imperative for all states to ensure sustainable development (UN, 2006; Koistinen, 2018). Chataika (2013) argues that like gender mainstreaming, disability mainstreaming is the inclusion of disability in all features of aid from Poverty Reduction Strategy Papers (PRSPs) to NGO activities. This chapter begins by giving a brief overview of disability models, to locate the human rights model of disability, before explaining the relationship between disability, the African agenda and the sustainable development agenda. This will help in understanding disability activism and the main issues in mainstreaming. An elucidation is given of the need of capacity building for activism on mainstreaming and rights. In particular, the mismatch between the needs of disabled people and the development programmes that are designed to ­address their needs (demand side) and what government and development partners are offering (­supply side) is examined in terms of a case study of activism in the South African context. In order to understand mainstreaming, there is need to understand the causes and effects of claims for disability rights.

Disability models and African rights It is not possible to cover or debate all definitions of disability, which generally function as an umbrella term and the CRPD explains disability as an ‘evolving concept’ (UN, 2006). In this chapter, the term ‘disabled people’ has been adopted instead of persons with disabilities in 437

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keeping with a human rights approach. The African Union Commission (AUC) has a­ ffirmed this definition in the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities (AUC, 2018) and ensured that the legal rights of inclusion in terms of education, employment and political participation are included. It is important to locate this definition within the diversity of models of disability. Several models of disability have been identified and debated in the introduction of this book. These include the charity, medical, social and human rights models. A charity model of disability depicts disabled people as victims of circumstances, who are deserving of pity (­Disability World, 2010). There is no recognition of equal rights nor the role that discrimination plays. Many charitable organisations still work with such models. Disabled people can be defined by their impairment and medical or technical solutions offered to alleviate their impairment. This is an individualistic approach that does not look at social barriers and as such, is termed a medical model. The medical model of disability can take a variety of forms depending on whether it emphasises biomedical abnormality per se found in the definitions (see WHO, 1976) or the consequent functional limitation, such as the inability to walk or see (see WHO, 2001). The dominant consideration in disability is mental or physical defect, giving rise to a very negative stereotype of disabled people. Impairment, not humanity, comes to construct the identity of the persons with disabilities, who are then viewed as objects of care and not as conscious actors in their own situation. The social model views disability as a socially created problem and a matter of the full integration of individuals into society (Disability World, 2010). The inequities faced by ­d isabled people can only be overcome if the structure of society is changed. Disability activists have conceptualised a social model of disability, which sees disability not as something to do with the individual, but rather as something to do with society. They have maintained that ­d isability is a function of social, not medical or individual factors at all, such as prejudice and discrimination. These are often referred to as barriers to full participation in society, erected against disabled people by society itself, and can be attitudinal, material, physical, economic, social, cultural or political. Put in another way, the social model of disability points to the ways in which people with impairments are excluded by the way that society is organised. It is this exclusion that disables people and not something inherent in impairment. While impairments are part of the human condition, there is no irresolvable reason why this should lead to exclusion and so to disability. Hence, most research and activism has focused on inclusion of disabled people and removal of barriers to their social participation in daily life (Wazakili et al., 2011). The widespread use of the term ‘social model’ among those working in the disability and international development field is because the model is embedded in human rights and development (Chataika et al., 2016). In development work and aid, when disability and human rights are mentioned, this ­refers to the CRPD. The United Nations General Assembly adopted the CRPD in 2006 (UN, 2006) and it has been signed by 187 countries worldwide, and ratified (made legally binding) by 179. Nine countries have taken no action in ratifying the CRPD. Furthermore, 119 countries have signed the Optional Protocol to the Convention, and 91 have ratified it (UN Human Rights, 2019). The CRPD takes a broad and multifaceted approach to addressing the human rights of disabled people. It introduces a new way of thinking about disability within the human rights framework and confronts traditional understandings of disability that view disability narrowly, as a medical issue or charity concern. The adoption and the entry into force of the CRPD and its Optional Protocol challenge disablism and ableisist attitudes and mark a profound shift in existing approaches towards disability. In a human rights model, the focus is no longer on a perceived ‘problem’ of the 438

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person, with the impairment seen as a matter of deficiency or disease. On the contrary, the CRPD views disability as a ‘pathology of society’, that is a result of the failure of societies to be inclusive and to accommodate individual differences (UN, 2006). Societies need to change, not the individual, and the CRPD provides a wide-ranging road map to enable such change through legislation. Disability rights activists and advocates on the African continent have thus been trying to ‘domesticate’ the CRPD or make it their own (Lord & Stein, 2013); and they have also thought about what an African human rights model would entail. While disabled people are entitled to human rights, they very often face serious ­d iscrimination based on attitudes, perceptions, misunderstandings, and lack of awareness. Too often, across Africa, disabled people are excluded from mainstream activities, in many ­a spects of society in the areas of employment, education, housing, health, access to justice, ­cultural expression and communication, which are intended to benefit the entire p­ opulation (­Watermayer et al., 2018). For example, the misconception that disabled people are not ­productive members of the workforce may lead employers to discriminate against applicants with d­ isabilities, even if they are highly qualified to perform the work. The rights of disabled people are also recognised in Africa’s seminal human rights instrument, the 1982 African Charter on Human and Peoples’ Rights. The African Commission on Human and Peoples’ Rights (the African Commission), at its 45th session in May 2009, transformed the Focal Point on the Rights of Older Persons in Africa into the Working Group on the Rights of Older Persons and Disabled people in Africa. On 24 and 25 October 2011, a meeting of the Working Group, which took place in Banjul, the Gambia, alongside the meeting of the 50th session of the African Commission, resolved to proceed to prepare a Protocol on the rights of disabled people in Africa, which is also known as the Africa ­Disability Protocol (ADP) (African Union (AU), 2018). The founding documents of the ADP articulate three important principles and a­ pproaches: First, using the CRPD as its underlying minimum standard setter, it lists and analyses continental instruments to the extent they establish norms for ensuring the rights of disabled people in Africa. It shows that by and large, African human rights instruments fall short of the minimum standards established by the CRPD; yet, significant provisions may still be tailored into a new disability rights instrument from existing African instruments. Second, the ­documents identify the concerns which African states had as they participated in negotiating the CRPD. This exercise was useful as a basis for assessing the extent to which Africa’s concerns were actually incorporated into the CRPD, and thereby isolating further norms for ensuring the rights of Africa’s population of disabled people which should be included in an Africa-­ specific disability instrument. Finally, the documents identified the list of rights and themes, which were later included in the Africa Disability Protocol.1 The main objectives of the ADP were to provide African specific legislation and to translate the CRPD standards or surpass those to Africa-specific human rights instruments for disabled people. The adoption of the ADP on 29 January 2018, by the Summit of the AU Heads of States and Governments, marked a significant milestone in the policy formulation environment in Africa. Current work by the Pan Africa Parliament (PAP) to prepare and disseminate a Model Disability Law (MDL) for Africa will guide countries to domesticate the ADP. The leadership role played by the Africa Disability Alliance (ADA) ensured that the needs of a diverse population of disabled people were included in the final texts of the ADP and the MDL (ADA, 2016, p. 2). It is worth noting that the ratification of the CRPD, the Optional Protocol and the a­ doption of the ADP have not yet benefited disabled people on a scale needed to achieve a credible improvement in their quality of life and enforcement of their human rights. The majority 439

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of countries have not domesticated the CRPD and it remains to be seen if an African model of human rights will ensure the sustainable change that disabled people need. It will also be interesting to see how it develops and is affected by the work of A ­ frican ­activists, DPOs, researchers and the disability movement in terms of the sustainable d­ evelopment agenda.

Sustainable development goals and mainstreaming The Millennium Declaration (UN, 2000) and the eight UN Millennium Development Goals (MDGs) with a target of 2015, did not specifically mention disability with respect to the key aim of poverty reduction work in international aid (Lord et al., 2010; McLachlan et al., 2014). Yet, as an unintended result, their promulgation may have served as a catalyst encouraging many people and organisations to reaffirm the links between disability and poverty in greater complexity. The International Labour Organisation (2002, p. 3) pointed out that the ­relative absence or inadequate treatment of the disability issue in PRSPs reflected the fact that ­d isabled people and their organisations had not been given the opportunity to participate or have not sufficiently participated in consultative processes. This indicates some of the early failures of mainstreaming and why disability rights, research and activism have become ­critical in the African context (Lord et al., 2010; Chataika, 2013; McLachlan et al., 2014). Hence, a lot of lobbying, inclusive of African activists and the disability movement went into ensuring that disabled people and their issues were included in the UN Sustainable Development Goals (SDGs) 2030. There was a move to view disability as a more holistic issue connected to environment but also the need to ensure ‘evidence’ and monitor targets for disability inclusion and mainstreaming. This could be linked to the fact that while disability is ‘formally’ mentioned in UN treaties, there is no real substantive inclusion (Skarstad & Stein, 2018). The inclusion and the participation of disabled people and their representative organisations in all phases of developing the SDGs and subsequent mentioning of disability in several SDGs added significant value and meaning to the theme ‘leave no one behind’ (UN, 2016; Cobley, 2018). Disability is referenced in various parts of the SDGs and specifically in targets and indicators related to education (SDG 4), growth and employment (SDG 8), inequality (SGD 10), accessibility of human settlements (SDG 11), as well as data collection and monitoring (SDG 17) of the SDGs (UN, 2015). Overall, it is thus not surprising if no SDG is specifically about disability, that disabled people are not sufficiently included or mainstreamed into the SDGs (UN, 2018). Similarly, when examining the major global fiscal institutions, only 2% of the World Bank’s programmes were found to be inclusive of disability despite the fact that they are now explicitly funding disability programmes in areas like social protection, technical capacity building, education, health and affordable housing (Karr et al., 2016). This means that mainstreaming is not a matter of consistent programming on a global level, but being moved to national governments and the civil society organisations (CSOs) who often do not have the resources to ensure it. Yet, according to Albert et al. (2005, p. 11), mainstreaming should be seen not as an end in itself but as a strategy for building a human rights approach into international aid and policy frameworks. It is not just about inclusion, but the precise nature of that inclusion. It is absolutely essential that the broader, more radical goals of disability mainstreaming, that is effective participation (as opposed to mere ‘involvement’) self-empowerment, self-­ determination and equality are not soft peddled (Albert et al., 2005, p. 11). There is always a danger of tokenism as well as possibilities of disabled people in positions of power to be co-opted or becoming figureheads (Chataika et al., 2015), and this is why it is becoming ­increasingly important to spell out what mainstreaming entails and also collect evidence from where it has worked. 440

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Generally speaking, a twin-track disability inclusive approach is advocated to ensure that firstly disability is mainstreamed in all international and national policies and programmes. Secondly, to ensure that there are specific interventions focusing on disabled people in terms of capacity building. Mainstreaming in development is an intricate process that takes place across a number of distinct but interlinked realms of activity on an individual, social and structural level. To make sense of this and provide a practical guide to implementation, it is useful to disaggregate the various realms and consider what specific strategies or interventions are appropriate for each one. They way in which this could be done, is by requests of funds or resources to ensure implementation of a programme. The main problem addressed through mainstreaming in programming processes and strategies is the exclusion of disabled people from legislation, policies and programmes, which when addressed, benefit other population groups. Such exclusion, results in disabled people being more disadvantaged, finding it challenging to escape entrenched poverty and ­generally not benefitting from development processes. An effective programming process opens ­pathways for the participation of demand-side organisations (e.g. DPOs, other CSOs and duty bearers (government and through development c­ ooperation partners, among others)). Generally, programming or development planning is viewed in a managerial or business model, which consists of: lobbying for change because an issue has been identified; analysis occurring of that issue and needed changes; identifying stakeholders and b­ eneficiaries; ­ onitoring ­conducting a strengths and weaknesses analysis (or risk analysis) and then ensuring m and evaluation takes place. It is important to emphasise that effective development ­planning should be approached as an interactive process, and not as a linear set of prescribed steps. Some phases in the planning cycle could be the starting point while some might ­continue throughout the life of the project. Before any programme planning, lobbying begins by disability activists, DPOs, NGOs, CSOs, international community and/or the disability movement. The disability movement in Africa has developed and achieved early-stage progress in the policy formulation processes and public representation strategies. These successes and challenges are epitomised by, among others: •

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Emergence of disability policies, legislation and strategies at national and international levels. This was a good achievement but the implementation and funding allocations remain small and insignificant. Initial success in mainstreaming disability using the twin-track approach (i.e. standalone disability policies/strategies and inclusion of disability within mainstream policies/ ­strategies) at national and international levels. However, mainstreaming of disability has not necessarily benefited the intended beneficiaries in their diversity; policies/­ legislation within a twin-track approach have not necessarily benefited disabled people within ­t argeted communities and the approach of mainstreaming was not necessarily applicable in all societies/geo-locations in Africa due to among other factors lack of resources, capacity and infrastructure. Initial progress in achieving a re-distribution of resources (human, fiscal, time and other) to disability programming and implementation. The majority of policy commitments related to the human rights of disabled people do not have any resources allocated for purposes of implementation. While some programmes that target disabled people had resources allocated, the resultant expenditure was not related to disability objectives. Other factors such as lack of skills within and outside of governments, poor time 441

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•

•

management which creates the fallacy of ‘being busy with other competing needs’ or ‘we are short-staffed’. Also, corruption presents challenges that require effective management of governance/accountability/judicial systems and appropriate technical skills, preferably, but not exclusively from disabled people themselves, to guide/support the advocacy efforts/gains of the disability movement. Capacity to respond to instances of violations of human rights, including an increase in the enforcement of such rights through relevant public entities (e.g. Human Rights Commissions, Equality Courts) and the judicial architecture within/outside of each country. The gradual-but-slow development of capacity to respond to violations of human rights of disabled people in Africa is a major challenge that prevents achievement of these rights. All-round lack of knowledge, statistics, innovation, creativity and failure to prioritise disability rights are some of the factors that negatively affect enforcement of rights. Some violations are not reported. The judiciary and frontline human rights defenders/responders are overwhelmed with workloads, low morale and corruption within and outside of their ranks. Increased promotion of a human-rights philosophical approach that relates to/targets the functions, mandates and responsibilities of different tiers of government (from the Presidency to the Local Government Sector/ Authorities-individually and within clusters of government/across borders) and actors in all sectors of government/development cooperation/society. The effective mainstreaming of the rights of diverse populations of disabled people within different sectors of government (ministries/departments/units) was a major victory for the disability and human rights movement. However, the benefits of this victory are yet to translate into real benefits for disabled people. Lack of progress can be attributed to: • Poor management within government ministries/departments/units created a perception that disability is an ‘added’ responsibility outside the core functions of the different sectors of government. • Inadequate capacity, knowledge, evidence and technical skills to enable the disability movement to work on such a diverse range of sectors. Similarly, all duty bearers (governments, donors, public entities, political/economic/social structures among others) have no capacity to attend to the needs of disabled people in all sectors of government/society as the historical allocation of this work was located within the realm of ‘Social Welfare Services’. • Poor delegation/allocation of responsibilities/mandates resulting in fragmentation/ lack of cooperation between/among DPOs, government sectors and society. Within government, the development of ‘disability focal points’, ‘disability units’ or standalone Ministries dealing with disability had unintended consequences. These focal points and Ministries were intended to distribute, monitor and guide implementation of disability programmes, relevant to the core business of the entity, across all internal structures and externally across sectors of government. However, the ‘dumping of all aspects related to disability’ onto these focal points/ ministries, with little or no resource allocations, resulted in a paralysis in the policy implementation value-chain. Disabled people are often shunted from one focal point to another and between ministries until they give up. Other structures also share this poor management of roles and responsibilities. • All major development cooperation partners have policies or strategies whose purpose is to mainstream disability in their work and funding criteria. However, their

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country missions often lack awareness, innovation and capacity to implement these strategies. Government-to-government development cooperation agreements often exclude the promotion of the rights of disabled people, thus missing the opportunity to use the following articles: i. CRPD in Article 32 on international cooperation. ii. Africa Disability Protocol in Article 33 on cooperation. The ability to provide leadership, political guidance, advice on diplomacy and inter and ­­intra-government cooperation around disability mainstreaming is there. However, the lack of support to the DPOs, CSOs and disability movement in general has limited cooperation and consultations between governments and these organisations. Mistrust of the intentions of DPOs, NGOs and CSOs in relation to government, has created suspicions that are not conducive to cooperation and thus have affected programming on the ground. Yet, critically building capacity in these organisations to trickle down to disabled people and activists is what is needed.

Building capacity The benefits of development and the enforcement of human rights must be traced to the satisfaction of the needs of disabled people, where they or their mandated advocates define such needs. This assertion is true regardless of the level at which policy is conceptualised, formulated or implemented. Historical and current negative attitudes, violence, discrimination and myths around disability are still prevalent and manifest on individual, social and structural levels. At the same time on the African continent, we are witnessing the rise of disability activists, greater diversity of activism and greater wellbeing of disabled people and rising wealth (Chataika et al., 2015). While an African human rights model to understanding and approaching disability is emerging, its utility in addressing the diversity needs of across the life-course of disabled people is yet to be fully exploited. There is a greater need for capacity building of disabled people and their advocacy structures to deal with coming challenges to disability rights and mainstreaming. There are still widespread violations of the rights of disabled people based on a number of factors. These include imbalance in power relations, vulnerability (whether real or perceived) of disabled people, DPOs not having the funding, capacity or falling into the traps of patrimonialism and corruption, unequal distribution of resources and lack of benefit from past and present uneven social, economic and political systems. There are now also new challenges to development in terms of factors that will increase not only longstanding issues like poverty but also creation of disability, violence and unrest. The negative impact of ­climate change and other planetary changes on the lives of disabled people has brought new challenges to the world’s population as a whole. The scarcity of food, water, land and pollution of the environment has placed disabled people yet again at the forefront of navigating a new world order in which their voices are not always heard, yet, they are the first ones affected. All these challenges require a response from the African and disability movement as a whole if disabled people are to be placed at the centre of solutions to these problems, which disproportionally affect African nations. The movement must not only remain relevant with these developments, but ought to place disability at the core of planning, resource allocations and all decision-making. Advocacy tactics, methods and messages can no longer be the same as those used in the early decades of advocating for human rights if progress is to be achieved in addressing these new challenges.

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Disability advocates have been at the forefront of translating the advocacy gains of a diverse disability movement. Their efforts have been strengthened and complemented by other movements (e.g. political, gender, labour, academia) in a mutually benefiting struggle for rights. The political will demonstrated by governments and their political and economic structures has opened new pathways and opportunities not yet fully utilised. While other countries tackle with the erosion of disability identity, in Africa it is one that still carries cogency for people; but the problem the movement faces is lack of resources and political support. The key tools of capacity building and the policy implementation environment must be informed by sector-wide policies, legislation, programmes, projects, strategies and implementation models. This inter and intra-sectoral approach to developing linked and integrated strategies will play a crucial role in understanding of how best to deal with the problems faced by disabled people in different sectors of government and society, using the now-well-­established conceptual understanding of the human rights-oriented philosophy of the disability movement (ADA, 2015). In order to satisfy the needs of disabled people, capacity (both political and technical) is required on both the demand and supply sides. Also required are strategic ecosystems comprised of programmes/projects/strategies (on both the demand and supply sides) that articulate the needs of disabled people. This is particularly in relation to the development process, poverty alleviation, human rights, SDGs and other priorities. The relevance and utility of all the SDGs for disabled people lies in that participation increases and improves the possibility of success in achieving the goals. Advocates cannot be neutral, but ought to publicly and within agreed principles, norms and standards, take sides and align their efforts for the benefit of the causes they promote. Advocates cannot succeed in playing their roles effectively if: • • • • •

They have limited knowledge, evidence, statistics and conscious awareness of the current and future trends in key areas of life as defined by disabled people; Their skill-sets are limited with no access to relevant education, training and effective practice in the chosen advocacy field; They choose inappropriate strategies to convey their advocacy messages to irrelevant audiences that are neither able to make decisions nor cause change; They have no resources to invest in achieving the current and future objectives of policies, legislation and strategies; There is no unquestionable commitment to the cause of human rights for disabled people.

While the political arm of the African and international disability movement is fairly strong, with public representatives permeating societal structures at different levels, technical skills to match the gains of the movement are still lagging behind. Technical knowledge to design strategy ecosystems is presently lacking, resulting in poor implementation and effectiveness of policies. For activists, government officials and other role players, it is not adequate to identify the problems faced by disabled people without the knowledge and understanding of the cause-­ effect and means-to-end relationship (Pradhan, 2019). Due to competing needs among and within the diverse segments of disabled people and the rest of the population, priorities will need to be discussed, agreed upon and the necessary resources allocated for implementation

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to commence. I give an example of why the cause effect relationship is critical for activism and understanding rights as a means to an end.

Understanding disability rights There is inadequate allocation of financial and human resources for disability programmes. The financial and human resources, which are being provided by duty bearers (government and through development cooperation partners, among others) to take forward the disability mainstreaming agenda are pathetic. This makes it difficult for demand-side organisations (DPOs, other CSOs) and supply-side entities (government, development partners, private sector, other NGOs, CSOs etc.) to achieve their objectives of improving the quality of life of disabled people. Generally, this problem is precipitated by several factors, among them, the inertial response and resistance among supply-side entities to really take disability on board as a priority issue. In addition, the scale of the problem in terms of the high numbers of disabled people living in abject poverty in many countries in Africa and the diversity of the continent and complexity of the issues, are not fully comprehended (Dube, 2008). The key question is how disabled people could position themselves to benefit from the e­ merging ­legislative environment that accommodates their needs and secures a share of available ­resources emanating from policies earmarked for development programmes? For example, in the South African context after apartheid, it was essential for activists to explore and be knowledgeable about the primary causes of issues affecting ­d isabled people. In order to understand how to demand rights and ensure mainstreaming, they had to understand a cause and effect relationship which, in part, could be explained using the underlying hypotheses that: (a) Colonialism, apartheid and post-colonialism caused underdevelopment, division of ­A frican societies, dependency and poverty. This in turn, resulted in a high-demand for resources and introduction of institutions of disabled people who were previously integrated into the extended family system albeit under difficult circumstances (Dube, 2008). Such circumstances were not always based on discrimination, negative attitudes or bad intentions as there is evidence of an acknowledgement that a disabled person ‘does it his/her own way’ (Chirema chine mano acho a Shona proverb from Zimbabwe); (b) A disabling environment and ableism in society is the primary cause for vulnerability, and a weak bargaining position for disabled people; (c) Inability to influence the key processes and outcomes of development cooperation, local and international aid flows and medium-term expenditure frameworks of government resulted in poor prioritisation of disability work; thus affecting development for disabled people; (d) All the above, and other factors, resulted in resources not being allocated to programming and service delivery with outcomes that benefited disabled people. The effect of colonialism and post-colonialism was felt in terms of the resultant poverty and structural violence of everyday life, particularly among marginalised groups such as disabled people. Apartheid and negative stereotypes about disability were exacerbated as no policies were put in place to address the needs of disabled people. This resulted in phenomena such as high levels of illiteracy, inequality between ‘races’, discrimination, violence, poor capacity among the diverse populations of disabled people (i.e. particularly children, women, the ­elderly and people with intellectual disabilities negatively affected) as individuals and

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groups, and unequal power relations that in turn resulted in the poor allocation of resources to d­ isability work. The causes and other factors described above resulted in: •

• •

•

•

•

•

Disability programmes not being factored or mainstreamed in government and ­development aid programmes (supply-side duty bearers); thus were not funded, ­implying that the needs of disabled people were not met. This led to increased poverty, creation of disability and aggravation of existing disability, marginalisation and discrimination; Lack of capacity (within/among duty-bearers and rights-holders) to achieve the ­objectives and successes linked to policy/advocacy work of the disability movement; Lack of technical skills within the disability movement (rights-holders) and duty-bearers resulted in failure to follow through with policy implementation, based on participatory methodologies, whose purpose was, and still is, the achievement of positive outcomes for disabled people; The vulnerability of DPOs was, and still is, among other factors, a direct result of lack of or unfair/unequal distribution/ prioritisation of resources, capacity and effective ­political-will to enforce human rights contained in policy instruments; The above factors resulted in poorly conceptualised/underfunded strategy ecosystems in a few sectors of government (usually social (welfare)/health) where the expertise/ knowledge and skills of disabled people themselves were conspicuous in their absence; The inability to manage partnerships and at times intra/inter organisational in-­ fighting/rivalry and ruthless competition for scarce resources entrenched a culture that ­negatively affected disabled people as individuals or (community) groups. This inevitably ­contributed to the emergence of corruption, undemocratic governance structures/ systems, violence and criminal activity; This further contributed to the ineffective implementation of programmes, projects, strategies and disunity within the disability movement, affecting development among disabled people, whose needs still remain unmet.

The causes and effects that contributed to the problems being encountered by disabled p­ eople are illustrated in the problem tree in Figure 33.1. Key aspirations of disabled people are the achievement of the main objective of ensuring that financial and human resources for disability programmes are allocated and made more available than at present; thus, contributing to a reduction in poverty among disabled people. The means or objectives that will achieve this outcome include: • •

•

Achievement of postcolonial freedom that in turn leads to democracy, improved ­attitudes towards disability within the context of a developed State. An enabling political and policy environment could in turn reduce demand for ­resources (e.g. for social security grants, as citizens and organisations pursue self-­reliance and other development options) and increase levels of invulnerability. Thus, putting demand-led organisations (DPOs) in a strong position to influence development ­cooperation, aid and government fiscal allocations that benefit disabled people on an equal basis with other population groups. Funding partners could also prioritise disability programmes; thus achieving a fair and equitable redistribution of resources to disability programmes. Adoption of disability policies/legislation and improved levels of awareness, literacy/ knowledge/evidence of good practice could contribute to enhanced capacity/implementation of policies within/among demand-side organisations and supply-side entities, equal power relationships and good practice. 446

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Disability programmes have no resources for implementaon

Fiscal resources and development cooperaon not allocated to disability programmes

Needs of PWDs not sasfied

PROBLEM:

EFFECTS

Inadequate allocaon of financial/human/other resources for disability programmes, thus exacerbang poverty among PWDs.

CAUSES

CAUSES

Resources not equitably distributed to disability programmes

EFFECTS

DPOs unable to influence allocaon of fiscal and development cooperaon resources

Poor or no funded disability programmes

Figure 33.1  Cause-effect relationship – main factors

•

The desired scenario at the end is when: • Disability programmes are funded and mainstreamed into all sectoral strategies with evidence of benefits in key areas of life as defined by the diverse population of disabled people; • Improved and sustainable capacity for invincible demand-side DPOs, thus resulting in organisational harmony, ability to manage funding partnerships, improvement in the design and implementation of a wide variety of programmes and satisfaction of the needs of disabled people; • Poverty among disabled people reduced and programmes effectively implemented within an environment that promotes unity of purpose and cooperation with the disability sector. • All these factors will contribute to alleviating the poverty in the long term.

Figure 33.2 gives a simplified illustration of possible objectives, that could be discerned from the issues outlined above, which could improve the lives of disabled people. As there are a number of objectives and options, there is a need to prioritise the solutions that are likely to achieve the best impact. In Figure 33.2, there are important issues that are were prioritised while solutions that became envisaged objectives for the future (e.g. achieving an enabling environment, ­benefiting from development cooperation, aid and government spending) were implemented. The strategy tree shows the main means to achieve some of the objectives as shown in Figure 33.2 below. 447

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Disability

programmes

Fiscal resources and development cooperaon are allocated to disability programmes

have resources for implementaon

END

OBJECTIVE: Adequate allocaon of financial/human/ot her resources for disability programmes, thus alleviang poverty among PWDs.

END

MEANS

MEANS

Resources are equitably distributed to disability programmes

Needs of PWDs are sasfied

Funded disability programmes DPOs able to influence allocaon of fiscal and development cooperaon

Figure 33.2  Means-to-end relationship – main factors

Figure 33.3 explains how to ensure adequate allocation of financial and human resources for disability programmes at an enhanced and sustainable scale needed to reduce and alleviating poverty among disabled people. The demand-side organisations and supply-side entities can cooperate around objectives related to: • •

Strategic ecosystems that match the allocated fiscal, development cooperation and other resources. Fiscal resources and development cooperation allocated to the implementation of disability programmes and possible partnerships that are capable of delivering value to disabled people in different sectors of government/society. 448

Why mainstreaming in Africa matters

Fiscal resources and development coopera on are allocated to disability programmes

Needs of PWDs are sa sfied

Disability programmes have resources for implementa on STRATEGY:

OUTCOMES

Adequate alloca on of financial and human resources for disability programmes, thus allevia ng poverty among PWDs.

OUTCOMES

STRATEGY

STRATEGY Resources are equitably distributed to disability programmes

Funded disability programmes

DPOs able to influence alloca on of fiscal and development coopera on resources

Figure 33.3  Choice of strategies to achieve objectives – main factors

•

The net effect of all these factors is that poverty among disabled people will eventually be reduced. Although policy documents usually aspire for ‘poverty eradication’, this is a long-term aim not likely to be achieved in the near future, given the complexity of poverty, unequal power within the world’s economic and political order, the changing needs of populations as well as factors related to climate change and conflict, among others.

This section using a South African case-study, provided a consolidated analysis of strategies to identify and address the needs of disabled people through the policy formulation, programming and implementation processes. Also required are programmes, projects and strategies (on both the demand and supply sides) that articulate the needs of disabled people particularly in relation to the development process, poverty alleviation, human rights, sustainable development goals and other priorities. 449

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Conclusion In recent times, there has been a marked improvement in the inclusion of disability rights in development cooperation programmes but criticisms have been linked to the fact that these have focused on ‘soft’ rather than ‘hard’ rights (Chataika et al., 2015). Disability is often not a priority, despite the fact that governments that are recipients of international aid should and need to prioritise and mainstream disability in all sectors, national development plans, vision statements and government-to-government bi-tri-multi-lateral cooperation agreements. Yet, these are often conditionalities being set by an international community that prioritises neoliberal fiscal policies that can lead to further poverty for disabled people and erosion of social protection programmes (Lord et al., 2010; Chataika et al., 2015). Similarly, many nations in Africa do not have democratic governments or side-line the requests for rights by gaining aid from other autocratic states like China. Despite these challenges, an African model of human rights has begun to emerge and the movement has case-studies to draw on and learn from as indicated above. Disability has to be understood in terms of cause-effect and means to end relationship. In South Africa for instance, disability is well-embedded into the Disability-­Disaggregated National Development Plan (NDP) and 2030 agenda, thus ensuring that the needs of ­d isabled people are included in all sectors of the government. This has resulted in an upward trend in the allocation of fiscal and human resources to programmes that include the needs of ­d isabled people.2 It is important to note that while support for the formulation and adoption of ­d isability policies by development cooperation agencies has been good, policy implementation remains a challenge. Of particular note is the fact that there are capacity constraints at programme and mission levels that limit the effective policy implementation. What is called for from international aid agencies, besides a far stronger, clearer commitment, is a genuine understanding that disability is an African and global human rights issue that cannot be addressed without the participation of DPOs, both in the global South and North. There needs to be greater work to increase accountability and capacity for ­inclusion in setting development agendas, ensuring responsible global fiscal policy that is non-­ exploitative, which will not lead to the creation of disabling conditions. This also ­includes the utilisation of a twin-track mainstreaming approach, in keeping with the diversity of ­d isabled people in the African context and the future challenges that it will face. Without true global inclusion alongside mainstreaming of disability in African context, there can be no sustainable development.

Notes 1 See http://www.achpr.org/news/2014/04/d121. 2 See the South Africa National Planning Commission (NPC) at https://www.nationalplanningcommission.org.za/

References Africa Disability Alliance (ADA). (2016). Alliances for Rights – Africa towards Disability Inclusion (ARADI). Retrieved from http://www.africadisabilityalliance.org/ on 26 November 2018. African Union Commission (AUC). (2018). Protocol to the African Charter for Human and Peoples’ Rights on the Rights of Disabled People. Retrieved from http://www.achpr.org/files/news/2016/04/d216/ disability_protocol.pdf / on 26 November 2018. Albert, B., Dube, A. K., & Riis-Hansen, T. C. (2005). Has Disability Been Mainstreamed into Development Cooperation? London: Disability KaR Programme.

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Why mainstreaming in Africa matters Chataika, T. (2013). Gender and disability mainstreaming training manual. Disabled Women in ­A frica: GIZ Sector Initiative Persons with Disabilities on behalf of BMZ, Germany. Retrieved from http://www.diwa.ws/index.php?option=com_phocadownload on 17 December 2018. Chataika, T., Bergs, M., Mateta, A., & Shava, K. (2015). From whose perspective anyway? – the quest for African disability rights activism. In A. de Waal (ed), Advocacy in Conflict: Critical Perspectives on Transnational Activism (pp. 187–211). London: Zed Books. Chataika, T., & McKenzie, J. A. (2016). Global institutions and their engagement with disability mainstreaming in the south: Development and (dis)connections. In S. Grech & K Soldatic (eds), Disability in the Global South (pp. 423–436). Cham: Springer. Cobley, D. (2018). Disability and International Development: A Guide for Students and Practitioners. London: Routledge. Disabled World. (2010). Glossary list of definitions and explanations. (Rev. 2017). Retrieved from https://www.disabled-world.com/definitions/disability-models.php on 15 July 2019. Dube K. (2008). Mainstreaming Disability: Implications for Samaita Associates’ Resource Mobilisation and Policy Implementation Work (unpublished proprietary works). Karr, V. L., Sims, J., Brusegaard, C., & Coates, A. (2016). No one left behind: a review of disability inclusive development efforts at the World Bank. Knowledge Management for Development Journal 11(2), 27–42. Koistinen, M. (2018). Leave no one behind: disability mainstreaming in action. In Chataika, T. (ed), The Routledge Handbook of Disability in Southern Africa (pp. 36–49). London: Routledge. International Labour Organisation (ILO). (2002). Disability and poverty reduction strategies: how to ensure that access of disabled people to decent and productive work is part of the PRSP process. Retrieved from http://www.ilo.org/wcmsp5/groups/public/---ed_emp/---ifp_skills/documents/ publication/wcms_107921.pdf on 26 November 2018. Lord, J., Posarac, A., Nicoli, M., Peffley, K., McClain-Nhlapo, C., & Keogh, M. (2010). Disability and International Cooperation and Development: A Review of Policies and Practices. New York: World Bank. Lord, J., & Stein, M. A. (2013). Prospects and practices for CRPD implementation in Africa. African Disability Rights Year Book, 1, 97–113. Pradhan, K. B. (2019). The logical framework approach. Retrieved from https://www.pitt.edu/­ ~super7/16011-17001/16211.ppt on 15 July 2019. Skarstad, K., & Stein, M. A. (2018). Mainstreaming disability in the United Nations treaty bodies. Journal of Human Rights 17(1), 1–24. United Nations (UN). (2006). Convention on the Rights of Persons with Disabilities. Retrieved from http://www.un.org/ development/desa/disabilities/convention-on-the-rights-of-persons-withdisabilities.html on 18 March 2017. United Nations (UN). (2015). The 2030 Agenda for Sustainable Development (SD A/RES/70/1Gs). New York: United Nations. United Nations (UN). (2018). Realization of the Sustainable Development Goals by, for and with Disabled people Disability and the 2030 Agenda for Sustainable Development: United Nations Flagship Report on Disability and Development 2018. New York: United Nations. United Nations (UN) Human Rights. (2019). Multilateral treaties deposited with the Secretary-­ General. Retrieved from https://treaties.un.org/Pages/HistoricalInfo.aspx on 15 July 2019. Watermeyer, B., McKenzie, J., & Swartz, L. (2018). The Palgrave Handbook of Disability and Citizenship in the Global South. Cham: Springer. Wazakili, M., Chataika, T., Mji, G., Dube, A. K., & MacLachlan, M. (2011). The social inclusion of persons with disabilities in poverty reduction policies and instruments: initial impressions from Malawi and Uganda. In A. H. Eide & B. Ingstad (eds), Disability and Poverty: A Global Challenge (pp. 15–29). Bristol: Policy Press. World Health Organisation (WHO). (1976). International Classification of Impairments, Disabilities. and Handicaps (ICIDH). Geneva: WHO. World Health Organisation (WHO). (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: WHO.

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34 UNSETTLING REALITIES AND RETHINKING DISPLACEMENT Transforming settlement services for refugees, migrants and people with intellectual disabilities Natalie Spagnuolo and Yahya El-Lahib Introduction For many disabled people, home is out of reach. Home can be a memory that evokes ­geographic borders and borders barring access to essential supports. There may be more than one idea of home: the home that was left behind and the home we are struggling to create. As a result of these complicated relationships to home, migrants with disabilities and people with intellectual disabilities face unique challenges when it comes to securing a safe and ­d ignified life in Canada. Yet the challenges faced by these communities bear resemblance and overlap in many ways. Isolation, trauma, poverty, intimate and structural forms of violence are among the many inequities that can characterise their journey to settling in Canadian society in a way that allows for meaningful participation. These problems and the many other issues facing migrants with disabilities and people with intellectual disabilities often stem from processes of displacement, where individuals and families are forced to leave their homes and are denied the choices, supports and opportunities to settle and secure a sense of home and belonging elsewhere. In this chapter, we look at how displacement shapes the different pathways and barriers that confront people with intellectual disabilities, refugees and migrants with disabilities as they work to establish a good life. We encourage researchers, community organisers and advocates to approach local disability issues such as institutionalisation through a transnational framework that conceptualises displacement ­beyond the crossing of borders. Situating ourselves amidst our various and overlapping roles as Canadian academics, ­d isability activists and community researchers, and drawing upon a range of scholarship and reports, we offer new ways of understanding disability and displacement. Our attempt to ­re-frame displacement builds upon critical disability studies, critical displacement studies and anti-colonial theory and praxis, and can help account for the experiences of disabled people who have not left their country of origin but whose relationships to home are t­ roubled by violence, trauma, coercion and a lack of choice. Here we signal to people with intellectual disabilities who are born in Canada, but who struggle with displaced realities. The practice of segregating and confining people with intellectual disabilities coincides with a long history of deinstitutionalisation movements. Through these movements, self-advocates with 452

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intellectual disabilities, along with their families and allies, have been resisting dislocation and the displaced realities that result from forced confinement. In the following sections, we will show how these activist histories can been framed through a transnational lens that challenges how we think about space, location and settlement. We want to be clear at the outset that our goal is not to conflate differing experiences of displacement or erase the unique dimensions of oppression faced by diverse, displaced and intersectional communities. Rather, we seek to bring the experiences of refugees and ­m igrants – including those with disabilities – into conversation with the lived experiences of people with intellectual disabilities who face forced confinement and dislocation while ­living in Canada. We do this in order to illuminate underlying structures adversely i­mpacting these communities. In this chapter, we emphasise the importance of settlement as a process geared toward securing a sense of safety, home and belonging. Related to experiences of ­belonging, we introduce a series of challenges that broaden how displacement is understood and help bridge the gap between local and transnational advocacy efforts by pointing toward a ­conceptual common ground. Throughout, we suggest some practical consequences of ­reconceptualising displaced realities, describing how social services – particularly settlement services – can better respond to experiences of displacement.

Theorising displacement: from narratives of survivorship to transnational movements Displacement studies have asked important definitional questions that are of deep ­interest to community organisations and advocates due to their ability to affect law and policy ­provisions. While we have witnessed discussions around who counts as a displaced person that expand rigid United Nations Human Rights Council categories to account for ­various forms of forced mobility (see especially Bakewell, 2011; Castles, de Haas, & Miller, 2014; Barcus & Halfacree, 2017), there remains a need to go beyond existing displacement frameworks to a­ ccount for people with disabilities who have not crossed geographic borders and who are not formally defined as internally displaced people (IDP). Research by the authors reflects such an attempt (Spagnuolo, 2019; El-Lahib, 2018), and this chapter urges further research in this area. A strong foundation for our present work includes existing literature around disability and migration (reviewed later on). However, this research has not ­conceptualised displacement in local terms as a process affecting disabled people who have not crossed borders. By bringing together issues faced by refugees, migrants and people with intellectual disabilities who have not left their country of origin, we encourage displacement studies and studies in disability and migration to broaden their analytical lens to account for disabled people who have not crossed geographic borders. In this way, we can view ­individuals with intellectual disabilities as sharing support needs that are often associated with g­ eographic displacement in transnational contexts and along with these, similarly problematic relationships to space and location. In particular, we are concerned with the situation of survivors of institutions for people labelled with intellectual disabilities. Building upon previous work that distinguishes displacement from migration (see Bakewell, 2011), we argue that the life-course of many of these survivors and those at risk of new forms of institutionalisation has been characterised by a form of displacement that has involved forcible removal from their homes, followed by confinement in congregate settings or mega-institutions (Radford & Park, 1993; Trent, 1994; Dyck, 2013; Rossiter & Clarkson, 2013; Malacrida, 2015; Spagnuolo, 2016a;  Ford, 453

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2017; Hutton et al., 2017; Scott, 2017). Eventually, these same individuals may then experience re-location or attempted settlement by social service agencies into homes and smaller institutions not of their own choosing (People First of Canada, n.d.; Crawford, 2008; Shaw, Cartwright & Craig, 2011; Spagnuolo, 2016a; Spagnuolo & Earle, 2017; Spagnuolo & ­Boulanger, 2018). Within intellectual disability services, these settlement practices take the form of supported housing and are commonly referred to as ‘community integration’ or ‘community inclusion’. Many individuals who access these services experienced violence and trauma in the locations where they were previously housed and yet, community-oriented housing resettlement practices generally fail to acknowledge these important histories. Even worse, many community housing arrangements continue to replicate institutional forms of violence (Spagnuolo, 2016a; Barken, 2013; Spagnuolo & Boulanger, 2018), subjecting people with intellectual disabilities to re-institutionalisation. With these contexts in mind, we begin our conversation about translocal forms of ­d isplacement with narratives of survivorship from the intellectual disability community. Friedman & Beckwith’s (2014) history of self-advocacy among institutional survivors with intellectual disabilities exposes how forced relocation has operated as a disruptive and violent process at an individual level. The story of Carole Talley, a survivor of several large institutions based in the United States of America, is quoted at length in their study. Recalling her childhood and forced confinement in a custodial mega-institution known as Elwyn, Talley explains: ‘When I was three years old, I was taken from my family. My family didn’t have a choice. They didn’t have the money’ (Friedman & Beckwith, 2014, p. 242). Talley further described how she was raped, beaten, neglected and forced to undergo rituals that were intended to humiliate her. Her narrative articulates themes that appear over and over again in migration studies. These include the removal of choice and agency in relation to home and geographic location, violence, trauma and along the way, coercive processes that shape these injustices such as poverty and identity-based discrimination. Other survivor narratives expose the level of force and violence involved in ­confining individuals with intellectual disabilities, employing oral history methods to produce ­research that is both activist in orientation and critically important. The beginning of Carrie Anne Ford’s discussion of Huronia, a former institution based in Ontario, Canada, invokes ­blatantly custodial and punitive methods that were used against children with intellectual disabilities: ‘I was taken there by the police… upon my arrival there, I went right to i­solation’ (Ford, 2017, p. 15). Ford then describes being placed in ‘locked institutional wards’ (p. 15) along with other children, where she was brutalised (‘On numerous occasions Mrs. G. and her friends would punch me in the stomach, pull my hair, and break my glasses’ (p. 18)), raped by staff (‘He wanted me to perform oral sex on him. If I didn’t I would be locked in a small dark room with a bed on the floor. So I had to do it’ (p. 18)), and physically injured (p. 16). Ford also witnessed the murder of another resident: I saw one male laundry staff put one of the patients in the dryer. He turned it on and the patient died in there! We were told by the male laundry staff to keep quiet or we would be next. I was really upset. I saw the same male laundry staff take the patient out of the dryer and he was all mashed up. His face was black burnt. (p.17) Friedman & Beckwith (2014) provide an insightful summary of survivor reactions to ­institutionalisation, outlining themes that will be all-too-familiar to migration studies. These include ‘feeling abandoned’, ‘living in fear’, ‘coping with the actual experience of abuse’ and feelings of ‘shame and fear’ (p. 243). Read alongside refugee and migrant histories 454

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of violence, trauma (Khanlou, 2009) and isolation (Dossa, 2009), we can begin to appreciate how existing conceptualisations of displacement can be used to critically analyse histories such as Talley and Ford’s, which centre on issues of space, dislocation and translocal forms of exclusion. In his work, Bakewell (2011) further insists that displacement is shaped by the level of agency accorded to the individual who is moving, the ‘degree of change’ they have experienced and the ‘level of institutional engagement – the institutions that are involved in ­enabling (possibly forcing) people to move’ (Bakewell, 2011, p. 20). Each of these d­ imensions of displacement also defines institutionalisation for people with intellectual disabilities who, as a result of the high level of segregation applied towards this community in social service arrangements, are commonly and outright denied the right to choose where they live. The denial of choice is a deeply embedded dimension of segregation, playing the dual role of cause and consequence of institutionalisation. In many Canadian jurisdictions, ­people with intellectual disabilities are separated from the broader disability community and are only granted access to housing and supports through specialised programmes. F ­ urther ­deepening this segregation are the ways in which many provinces continue to fund congregate care facilities that resemble large custodial institutions, as well as sheltered workshops that deny ­people with intellectual disabilities a legal minimum wage (see, for example, ­Spagnuolo & Earle, 2017). Underlying these problems is the sheer force of economic ­coercion, touched upon in Carole’s story, which lands many individuals with intellectual disabilities in ­institutional environments after removing them from potentially less restrictive and more inclusive settings, such as family homes. These shifts to more segregated environments occur under the tight management of social service systems that are specifically designed for this ­community. So, while the ways in which many marginalised communities access safe affordable housing continues to be unjust, the experience is intensely restrictive, punitive, and custodial for people with intellectual disabilities due to the formal and often explicit denial of choice based solely upon their disability status. When we return to some of the defining questions posed by Bakewell (2011) and other displacement theorists, which ask about the level of choice and institutional oversight involved in an individual’s relocation, it becomes evident that people with intellectual disabilities may be thought of as displaced persons within their country of origin. However, as Bakewell acknowledges, some researchers and most notably Hathaway (2007) as discussed in Bakewell (2011), fear that by applying such subjective evaluations and expanding the definition of displacement, we will inadvertently erode the protections accorded to groups such as refugees through their special status. With Hathaway’s (2007) critique in mind, it is equally important to recognise that attempts to use a common framework do not necessarily negate the particularities of oppression experienced by different communities. This is especially true when racism, colonialism and intersectional realities are involved, as they often are for refugees and migrants who move to Canada from the global South. For his part, Bakewell (2011) justifies the importance of broadening displacement by focusing on the reality of choice and its absence. He writes: We have to understand the connection between the mobility of people who are forced to move (the displaced) and ‘voluntary’ migrants’, as there is ‘[n]o clear dividing line’ when it comes to free choice and coerced decision-making. (p. 18) Bakewell’s reasoning facilitates a clearer understanding of how poor people around the world – those most marginalised by colonialism and global capitalist processes – are forced into movement and displaced by injustice. His argument is also helpful from a translocal 455

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disability and advocacy perspective because of the underlying emphasis it places on choice and the links drawn between coercion and structural processes that are active at both global and local levels. Comparing the situation of economic migrants to refugees, Bakewell discusses globalisation and capitalism as structures that not only shape relations of labour, but also violent conflict. In his words, ‘[m]any of the conflicts which drive the movement of refugees are intimately connected to the same global capital interests that are also driving labour m ­ igration around the world’ (Bakewell, 2011, p. 18). This statement holds strong r­ epercussion for ­d isabled people. For instance, we know that violent conflict is one of the leading causes of ­d isablement (Soldatic & Grech, 2014), and that disability and poverty are intimately c­ onnected (Crawford, 2013). This means that the same interests spurring transnational ­m igration can also generate disability and the deep poverty endured by disabled people who may then be forced to relocate. Transnational disability studies and activism have exposed these connections (Soldatic & Fiske, 2009; Soldatic & Meekosha, 2012; Soldatic, 2013; S­ oldatic & Grech, 2014), while existing research on disability and migration pick up this thread by looking at how disabled migrants and refugees experience transnational movement and settlement (Karanja, 2009; Mirza, 2010; Shivji, 2010; Pisani & Grech, 2015). We can enrich our understanding of these underlying processes by considering how (neo)colonial capitalist interests have subjugated and displaced people with disabilities through forced relocation in translocal settings within their country of origin. One way we can begin to theorise these connections is to look to the ideologies that justify confining people who are labelled as having an intellectual disability.

Coerced movement and the politics of re-location Recalling that punitive and segregative policies toward people with intellectual disabilities have historically been informed by the view that they are among the most economically unproductive citizens (see Trent, 1994) to the point where it is claimed that other members of their household are rendered unproductive through their presence (Burghardt, 2014), helps draw out the capitalist underpinnings of these injustices. Taking a closer look at how ­m igration is experienced by people with intellectual disabilities, there is even reason to believe that their deportation and dismissal from Canada follows the same logic of productivity (Spagnuolo, 2016b; 2016c; 2018). Histories of institutionalisation, including advocacy and work by survivors ( Joffe, 2010; Burghardt, 2014; Malacrida, 2015; Hutton et al., 2017; Ford, 2017; Scott, 2017), demonstrate that many former mega-institutions violated basic ­human dignity by forcing disabled residents into routines of violent and degrading treatment. Self-advocates with intellectual disabilities and advocacy groups who continue to work ­towards deinstitutionalisation have also found problems within newer arrangements, speaking out against community-based housing models such as group homes and claiming that these housing options replicate forms of violence experienced in mega-institutions (People First of Canada, n.d.; Spagnuolo & Earle, 2017; Spagnuolo & Boulanger, 2018). Meanwhile, people with intellectual disabilities accessing these housing models are still unable to choose where they live and who they live with. Choice, in these contexts, can refer to the region, city, neighbourhood or group home where they end up being placed. Refugees and migrants who are forcibly displaced from their country of origin also face restricted choices related to where they can settle, including the country, province, region, city or neighbourhood. For many individuals and families, the absence of choice is linked to international policy and national immigration laws that exclude disabled people 456

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(El-Lahib & Wehbi, 2012; Chadha, 2008; Hanes, 2009; Mirza, 2010; Dolmage, 2011; Mirza, 2014; El-Lahib, 2015; Joseph, 2015; El-Lahib, 2016a; Baynton, 2016; Spagnuolo, 2016b; 2016c; 2018). Regardless of whether they cross national borders, when members of refugee, migrant and intellectual disability communities arrive in their new destination, they can be confronted with intimate and structural forms of violence. For example, people with intellectual disabilities face one of the highest poverty rates in Canada and figure disproportionately in statistics on unemployment, homelessness and sexual violence (Spagnuolo & Earle, 2017). When it comes to refugees and migrants, many individuals and families face poverty and unemployment after arrival (see Picot & Lu, 2017), while discrimination based on race, religion, language and other forms of difference is especially pronounced for newcomers. Migrant communities also experience worse health outcomes, which are partly attributable to discrimination and poverty (see Khanlou, 2009), and women in these communities are vulnerable to domestic violence (Canadian Council for Refugees, n.d.). These inequities and forms of violence underpin the displacement experience whether they result from forced confinement and institutionalisation or forced transnational movement. This means that the level of injustice experienced both prior to and during the settlement process can create unique support needs for migrants, refugees, and people with intellectual disabilities. Unfortunately, the factors outlined above reflect a profound failure on the part of social services to support migrants, refugees, and people with intellectual disabilities in establishing a safe home. Creating services and supports that adequately address the present needs of these communities would go a long way towards remedying gross structural inequities. Appropriate services and supports must begin by recognising the displaced realities of these communities, acknowledging histories of trauma, violence, coercion and forced movement. Returning to Bakewell (2011), these personal histories are what characterise particular ­m anifestations of oppression as displacement. In his words, displacement is a subjective state that involves being or feeling out of place (Bakewell, 2011, p. 23). As previously explained, it is not necessary for a person to have crossed borders in order for them to be considered displaced. Within migration studies, this broader understanding of displacement has already been applied towards internally displaced people as well intergenerational people (Sangalang & Vang, 2016). These applications suggest that no straightforward criterion of displacement exists and they provide us with further reason for privileging personal stories to understand how individuals experience displacement. Bakewell articulates the importance of this more individualised approach when he defines displacement as, ‘a reflection of people’s personal history of movement and their perception of their position’ (Bakewell, 2011, p. 24). As this quote suggests, an individual’s view of themselves and their interpretation of ­ istory and situation accounts for how they come to be understood as a displaced their own h person. By focusing on the subjective state of being displaced, we are also obliged to take a more individualised approach to policies and practices that aim to support people to settle. Postcolonial philosophy has many insights to offer that can reshape settlement services. This is especially true of work that takes up the psychic dimensions of oppression (see Fanon, 1952; Fanon, 1963; Bhabha, 1994). Bhabha (1994), for example, addresses the tension that ­exists among occupied subjects around the desire to belong and find ‘home’. This is ­especially clear when he states that for the displaced colonial subject, ‘the very place of identification’ (Bhabha, 1994, p. 63), or sense of self and identity, is problematic. He further explains how this individual exists in a complex reality of belonging and not belonging or ‘a space of splitting’ (Bhabha, 1994, p. 63). Bhabha’s argument that colonial subjectivity is shaped by tension and a sense of ‘splitting’ related to identification compliments Bakewell’s (2011) 457

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discussion of displacement as an experience bound up with personal history and a feeling of being out of place. In arguing that displacement may be a form of migration as well as an experience that is separate from movement across geographic borders, Bakewell discusses ‘an ongoing condition which is concerned with a separation from home’ and a feeling of ‘exile’ (Bakewell, 2011, p. 22). More specifically, he claims that this form of exile involves ‘being out of place’ (Bakewell, 2011, p. 23). Reflecting these dimensions of displacement, survivors of institutions for people with intellectual disabilities such as Cindy Scott, have expressed a profound sense of isolation and not belonging. Discussing how she survived Huronia, Scott (2017) links her status as a member of the intellectual disability community to someone who is viewed as ‘not normal’ or ‘retarded’. Scott explains, I survived, I survived. I lived to be part of these people. Be retarded. One that’s not normal. People don’t care about retarded people. They dump the bodies and don’t give a shit. (Scott, 2017, p. 29) Disability exclusion for those with intellectual disabilities can readily extend to a sense of not being human. This is evident in Scott’s statement that the bodies of people with intellectual disabilities were easily discarded by institutional authorities. Disability historians have helped account for such atrocities, providing evidence of a long history of non-disabled people challenging the human status of those with intellectual disabilities or impairments (Goodey, 2013; Carlson, 2010). Institutional confinement reinforces these harmful perceptions. Quite tellingly, survivor groups working towards emancipation have been recorded as crafting songs about waiting ‘to join the human race’ (Friedman & Beckwith, 2014, p. 244, quoting Beckwith, 1996).

Shaping supportive settlement services The anti-colonial emphasis on desire and belonging, as exemplified in Bhabha’s work, is an important point of intervention for settlement services. It also forms a crucial link between disabled, displaced realities and the realities of refugees and migrants who have crossed geographic borders. Bakewell (2011) rightly points out that displacement does not end with migration. Once refugees and migrants arrive in Canada, they may continue to experience displaced realities based on the psychic dimensions defined above: a sense of exile and being out of place. We would add to this that for people with intellectual disabilities who are coerced or forced into living environments that they have not personally chosen, displacement does not end with a return to community living. While governments that apply a community living approach and fund group homes – currently the predominant supported housing model in Canada (Power, Lord, & deFranco, 2013) – may claim they are offering inclusion and choice, the reality for many individuals is far from this promise. Here it is worth repeating that many of the community-based housing models that were created as alternatives to mega-institutions are structured along similar lines and replicate forms of violence found in larger congregate care settings. These disappointments are part of the ‘community living’ experience for many people with intellectual disabilities. They also resemble the broken promises that many refugees and migrants encounter after arriving in Canada. The promise that life is better elsewhere – whether outside of one’s country of origin or outside of a large institution, and more specifically, that life is better in Canadian communities, can be misleading. These promises can run parallel to the movement of people when we consider that colonial acts of dominance are often bolstered by similar claims of 458

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superiority. They also hide existing forms of oppression that make life in Canada inequitable and unjust for many people. These include service gaps and other disappointments that require exposure (El-Lahib, 2016b). Many of these gaps and injustices speak directly to the structural roots of displacement and broader capitalist interests and processes that lay behind displaced realities. False promises of ‘better homes’ can perpetuate a sense of alienation and not belonging, prolonging displacement even after government officials and service providers claim the settlement process has reached its end. By recognising that physical relocation to a new country or supported housing environment can contain new forms of oppression that upset one’s sense of belonging, and that this movement does not always mark the end of a displacement experience, nor the resolution of forms of oppression experienced prior to the move, we can better appreciate and address the needs of displaced individuals. Bakewell (2011, p. 23) identifies successful settlement as the only possible way to ‘reverse’ feelings of displacement. To achieve the reversal he is calling for, a displaced subject must ‘regain their sense of home’ (Bakewell, 2011, p. 23), or sense of belonging. In other words, successful settlement is defined by an individual on their own terms and according to their own values. In Canada, as in most immigration destination countries, settlement services operate through separate, federally funded programmes that are designed for refugees and immigrants. Conversely, what we have described as settlement for people with intellectual disabilities is a provincial responsibility. Regardless of these policy separations and the unique features of programmes designed for migrants, refugees, and people with intellectual disabilities, individual histories of displacement provide compelling reasons for critiquing both types of programmes through the concept of settlement. So, despite the jurisdictional separations that define these programmes, both must be attuned to the subjective state of displacement. Thus, services and supports that seek to accommodate specific needs must account for histories of violence, trauma, and current and intersectional forms of oppression and discrimination faced by individuals; such accounting holds transformative potential for settlement services. For people with intellectual disabilities, transforming services to account for displacement involves providing support for trauma and recognising forms of violence potentially experienced in institutional living arrangements. Scott (2017) explains that it is important to discuss the trauma she experienced as a result of being institutionalised, as this is now an everyday part of her life: Yes, it helps to get the story out. It’s always inside me. I saw what I saw. It makes me feel upset. It helps me to tell people the truth. How did I ever survive the HRC? I tell ­people, and it’s the true story. I live it every day of my life. It’s like a trauma in my head—it’s always there. It’s never going to stop. I live with that every day. (Scott, 2017, p. 23) To transform and improve the settlement services offered to people with intellectual ­d isabilities, it is necessary to avoid future institutional arrangements. In an interview with Burghardt (2014), Walt, a Huronia survivor and activist, criticises the group home model while emphasising the need for ‘peace at last’ (Burghardt, 2014, p. 362). Walt suggests that this kind of peace is not possible under dominant housing models. He explains: I don’t believe in group homes. I think we should call them ‘Peace at Last’ homes… like I said in my story, it says right here—Peace at Last—if you’re going to have a home for people with disabilities, I think you should call it not a group home, because we don’t 459

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like group homes. I think it should be called Peace at Last, because if you hear their stories, you’ll know what they all went through. (quoted in Burghardt, 2014, p. 362) Burghardt concludes her study by referencing ongoing issues of trauma, ‘the emotional, social, and physical consequences of years spent in an institution’, which mean that many survivors ‘are far from “peace at last”’ (Burghardt, 2014, p. 362). Despite the need for safe spaces for healing, most available housing models for this community continue to be institutional in nature. The broader failure of community living is evidenced by the now predominant group home model, which often pays lip service to ideas of self-­determination and community settlement, while in reality constraining choice, replicating patterns of violence, and creating or prolonging experiences of displacement and deep segregation. The shortage of counselling and mental health-related services for the intellectual disability community means that these primary and trauma-related needs are still not being addressed (Lunsky & Balogh, 2017). The situation is compounded by a much broader lack of options and supports. Such service gaps form a common reality for many disabled people and notably for ­m igrants and refugees. A strong foundation of research argues that settlement is a much more difficult experience for these communities because services are simply not attentive to their impairment-­specific needs. Research by Karanja (2009), Shivji (2010), Mirza (2010; 2011; 2014), Pisani & Grech (2015), Berghs (2015) and others have shown the impact of ­d isplacement and migration on disabled people, focusing on the unique barriers and forms of oppression they face in these contexts. As Shivji explains, this is because disabled people often face barriers during every segment of the migration and refugee experience: they are ‘among the most neglected during flight, displacement and return’ (Shivji, 2010, p. 4). Within Canada, some advocacy groups have begun to address glaring service gaps that exist for ­m igrants and refugees with disabilities. Recent work by the Ontario Council of Agencies Serving Immigrants (OCASI, n.d.) promotes disability knowledge within the s­ ettlement sector through ­community partnerships and training. Through another ­community ­partnership, a ­participatory training programme that we as authors initiated, addresses similar settlement-­ sector gaps through a collaborative approach to learning. This training programme seeks to go beyond service gaps by cultivating allyship among front-line staff. Special attention is given to the underlying power dynamics that shape experiences of migration, including colonial and neocolonial processes and technologies of differentiation that are underpinned by eugenic thinking (Spagnuolo, El-Lahib & Kusari, 2019).

Conclusions Re-centring the role of colonial and eugenic thinking in migration can help build bridges ­between white-dominant disability movements and research and disability groups who remain marginalised. Across North America and Europe, these dominant modes of ­research and ­advocacy tend to exclude refugees and migrants from the global South. Similarly, ­advocacy and research around intellectual disability is marginalised in mainstream ­movements and within disability studies itself. Yet marginalised communities have always been active in resisting unjust treatment and working towards a better life. Indeed, migrants with ­d isabilities and more specifically, people with intellectual disabilities, along with their families and allies, have their own rich histories that involve organising for change. Recent examples from Canada include migrant mothers of disabled children publicly exposing Canada’s ableist immigration system and its impact on family reunification (Thomas & Benitez, 2017), and 460

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people with intellectual disabilities speaking out against their unjust confinement (CBC Radio, The Doc Project, 2016). While settlement goals have not been articulated in relation to displacement within the deinstitutionalisation movement, advocates might benefit from a displacement framework that argues for individualised services and empowering relations that promote choice. This work could reinforce advocacy efforts around settlement services for disabled migrants and refugees by helping establish important links between disability services, displaced realities and dislocation. As we have seen, services designed for people with intellectual disabilities can shape ­experiences of displacement through spatial and other forms of segregation. Similarly, ­d isabled migrants who cross geographic borders to arrive in Canada can face new challenges and forms of displacement in the service sector when they encounter displacing processes. These double forms of displacement require further attention and close study. This chapter contributes to recent conversations (Spagnuolo, 2019; El-Lahib, 2018) by drawing attention to the need for settlement services to recognise translocal and transnational forms of displacement. Settlement, as we understand it, involves challenging existing ableist, racist and other discriminatory structures and their displacing effects – not promoting ‘integration’ according to existing norms. We have suggested that settlement service design ought to be attentive to the risk of displacement inherent in disability service provision and, rather than replicating these displacing processes, service provision can work towards addressing the displaced realities that disabled people already experience. Reconceptualising displacement in translocal and transnational terms supports new forms of intervention, including settlement services, which can lead to lasting, positive change for migrants with disabilities and people with intellectual disabilities. This framework allows us to rethink issues of space, both within and across borders and to trouble existing ways of managing space, which can shape service provision to support the creation of spaces that are safe and inclusive for members of these marginalised communities. More specifically, by ­returning to individual experiences marked by the material and psychic state of ­d isplacement, we can better analyse the failure or reluctance to deliver on promises of a better life for refugees and migrants with disabilities and for people with intellectual disabilities ­attempting to join Canadian communities. Feelings of not belonging can prevent members of these diverse communities from establishing a sense of home. We have already seen how barriers to securing a sense of home and belonging result from systemic barriers and structural forms of violence that are linked to displaced realities. Given this context, it is difficult to imagine how settlement might be possible without an approach that recognises the personal histories and intersecting forms of oppression that shape displaced realities on transnational and translocal scales.

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35 DISABILITY FUTURES Activism futures and challenges Maria Berghs, Tsitsi Chataika, Yahya El-Lahib and Kudakwashe Dube

Introduction In this book, we did not give a definition of what disability activism is, but rather preferred to see how it developed and was illustrated. People have documented stories of reclamation of spaces, mobilities, bodies, sexualities, genders, technologies, research, education, employment, policy and even time in the work of activism. We have noted how there is an embodied labour (physical, sensory and emotional) that is required to advocate for oneself and others, and that is not without serious risks of the embodiment of disability and reality of gaining more impairment, ill-health and injury as a result of engaging in activism. During the development of this book, people often prioritised their ongoing work of activism and we noted that it still consists of routines of writing of e-mails, letters, calling people, gaining funding and building real and virtual networks. It also included discussions of the nature of tactics that should be used to illustrate the impact of austerity, educate on disability rights, ensure research impact or protest policies of a populist government. The new activism, in terms of technology, has generally been viewed positively in terms of work of activism and potentials of advocacy being realised, but misgivings about its wider social impact on disability futures remain. The risks of ill-health, disability and impairment interrupted writing about activism, as did the demands of relationships and family life, while there was also a need to devote time to leisure so that ‘burn-out’ was not a reality. In the global North, we had contributors who were doing activism in their spare time and had to prioritise managing their conditions, ill health and caring for family members and children – especially if they were women. This gendered dimension of activism has often been glossed over in that women-related demands included cleaning, cooking, looking after children, as well as community organising. Other people related the labour of having to sort out their personal assistants or get support from family members or friends, and they were often an unseen part of enabling their activism. Often the demands of the neoliberal workplaces, inclusive of universities, meant that ‘real’ work had to be prioritised to illustrate contributions, fitness for and capabilities to the economy. Some of our editors and contributors were also located in the global South, where the work of survival in politically, socially and economically difficult times meant that writing 465

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could not always be the first priority. Despite these demands, we noted that the labour of this book was one of sustaining and supporting each other to ensure that stories could be told and this needed accommodations and adjustments. There were also many people who aided and gave advice to whom we are grateful and we note that we are building on the shoulders of giants. There are many activists who offered support but could not be included and this was only due to lack of time, space and funding. This book gives a flavour of what the ordinary work of activism is about, whether you are an undergraduate student or have been a member of a disability rights organisation. Inclusion was one of the rewards that were sustaining people, as were new partnerships, friendships, collaborations, communities, alliances and diverse coalitions (Fearon et al., 2018) for disability justice and shared vision of new disability worlds (Ginsburg & Rapp, 2013). However, the book has also confirmed that inequalities of disability (WHO & World Bank, 2011) are being negatively impacted by austerity, populism, poverty, disability hate and ­r ising violence, with the creation of more impairment and deaths, which people with ­d isabilities still have to contend with (Sherry, 2016; McRuer, 2018). While it seems that neoliberalism has brought with it a diffuse qualitative calculus in understanding disability in terms of burden, risk and economic cost (Puar, 2009; McRuer, 2018), how neoliberalism creates neo-eugenic conditions and more impairment, worsens disability and leads to violence and death, has been neglected. The book illustrates a plurality of different activisms on injustices occurring across the life-course that cannot always be ascribed as ‘disability’, but overall give a message of resistance.

Dissent, dialogue and discussion: growing new movements? Ensuring the vibrancy of disability activism and collective disability movement ­implies ­continuing to grow a culture of dissent, dialogue, disagreement and discussion. It is ­important to be able to be critical of each other and learn, in terms of growing theories, models and understanding positions, representations and politics, which we have noted, is critical to a collective consciousness. There is a sense in this book that while activism is growing, there have been several blocks and one of those is that of understanding the need to nurture new disability politics. Activists are working with different models and in interdisciplinary p­ erspectives (Crenshaw, 1991). Yet, we have documented many of the same theories and models on activism and have noted that this is stymieing growth of new ideas and more interdisciplinarity. Our contributors have noted that activists feel as if adherence to ‘models’ has to be maintained to ensure a place in the disability movement or that they should only work with people who identify as ‘disabled’. However, in the virtual roundtable chapter, authors argue that it is by building more diverse coalitions that more radical a­ lliances and political perspectives will be formed (Barvosa-Carter, 2001), instead of the status quo. For example, while work on environmental (human and animal) issues is going to be critical and the United Nations Sustainable Development Goals (SDGs) will take more of a central role in policy-making and impact of disability activism, there has been no description of an ‘­Eco-Crip’ theory (Ray & Sibara, 2017) or disability model of environmentalism. This means that activism is not future agenda setting, in examining wider structural causes of disability. We have also noted how many of the issues of activism have now become focused on survival or ensuring disability lives rather than political campaigns for change and direct political influence. Likewise, if someone wishes to adhere to a medical model of impairment because of the hopes of future cure, we have to take those wishes seriously in a culture of inclusion and be more sensitive to positionality and political differences. If we have greater calls for 466

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more local and culturally representative theories and models of disability, we should realise that this is part of the processes of decolonisation; not just within the global South, but also within disability activism and studies. This leads to another point, which while a plethora of identities and new political movements, for example, around neurodiversity, have been sustained in terms of activism, there has been some angst expressed about lack of adherence to collective disability models and theories. This is not an issue linked to the growth of identity politics, nor even growing interdisciplinarity of disability studies, but points to new challenges as well as opportunities for activism. We need to ask how is ‘disability’ now functioning? What is enabled or silenced by differing terminologies, such as ‘service-users’? Does disability now function as an ‘ideological linchpin’ (Erevelles, 2011; Blige 2016), in terms of neoliberal forms of government and discipline (Soldatic, 2015; Goodley, 2016), has it become a form of ableism (Campbell, 2009) or does it still have emancipatory potentials (Barnes, 2003)? (Fearon et al., 2018, p. 1) If disability as an identity is not salient, what else is? Can disability change to accommodate a new more plural disability movement and interdisciplinary activism? What new kinds of models and theories would be needed? Our contributors have given some hints and ideas of ways forward between a need to respect individual agency as well as desire for a collective movement to affect policy, practice and public changes. A new disability manifesto is needed (Ellis et al., 2018) with respect to the changing times in which activism is occurring, as well as taking into account geographical locations (global North and global South).

Activism futures: disability challenges This book has also documented some of the present and future challenges of activism. The most notable has been the rise of the independent researcher or community activist who is working on disability issues, often who does not call themselves ‘activist’. These people are working alone and often with no funding and support from larger charities, academics and government institutions. Those that have managed to form their own organisations or are able to fund themselves to do their work, are often from white middle-class backgrounds and/or have an understanding of the system and how to ensure their voices are heard. This entails that there are still issues of ablelism as well as disablism, racism, sexism, sanism and so on, which we have to address in activism, as well as its accessibility and relevance. This is aside from the bigger work of decolonisation and learning from past and present histories of activisms from the global South (Chataika et al., 2015; Chataika & McKenzie, 2016; Berghs, 2017; Chataika, 2017). Our contributors have documented how some similarities exist, in that austerity is affecting welfare entitlements in the global North and South, and described how this has been policy of conservative and far right governments. Yet, activists in the global South often have different needs in terms of the economic, social, cultural, as well as dangerous political situations in which they work, some of which has been docuented in the virtual roundtable. Fundamentally, the growth of the independent researcher and of new coalitions tells us something about the ways in which charities, academia and non-­ governmental organisations (NGOs) for disability, as well as local and global institutions, are not addressing the needs and rights of persons with disabilities (Chataika & McKenzie, 2016). There is a disconnect between the funding trends and priorities being set top-down and what is happening on a grassroots level, meaning that bottom-up actions are needed. 467

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This also calls into question the work of NGOs, academics and institutions, as well as the funding they are being given on disability. A connected issue is the ways in which we measure impact and evidence of activism and whether this is long term or short term? Do disability activists have the right kind of training for this work? We noted that while everyone knew national disability legislation linked to equalities or disability and the CRPD (United Nations, 2006), very few activists were involved in litigation or understood how laws were made. When so many legal entitlements are being rolled-back that make no sense and yet this is not being protested. Also, structural protections do not exist for safeguarding disability rights in times of economic hardship. Does this mean we have to rethink the impact of activism on a policy level? Societal changes are now viewed in terms of policy or legislative change; but perhaps we need to think in terms of how activism enables disability lives and futures? What structural changes can we make to ensure this politically? We have noted how there are categories of people that are being failed by globalisation and neoliberalism, such as migrants and people with learning disabilities in particular, in terms of a local and global politics that kills (Berghs, 2015; Berghs, 2016). We have illustrated ways in which disability activism can ensure connections are made across the disciplinary boundaries of activism, academia and also practice (El-Lahib, 2017) to ensure a more transformative politics (Erevelles, 2011) of life. We need to make more of such connections to ensure that disability activisms become stronger and the broader work and study of activism realises that disability is inclusive of all differing types and forms of activism and disabilities. ‘Nothing about us, without us’ is still being ignored and co-opted if environmental activists do not realise how disability and activism are linked or if persons with disabilities are being excluded from peace activism (Berghs & Kabbara, 2016). We have already mentioned growing inequalities, migration, conflict, indigenous lives and climate change as interlinked issues that will become crucial in terms of future of disability activism. We have also noted how important it is to understand our global disability pasts, learn from each other and continue to reclaim that history. This is in light of how many activists have stated that we are going backwards in time. We need to ask how to move forwards again and what such an agenda would consist of? For instance, instead of independent living, we note that people with disabilities are being locked up and institutionalised again. We need to comprehend how to stop this and what alternatives we can propose. Technological advances, biomedical innovations and better living conditions in the global North and South have meant that more people are now both living with and aging with physical and mental ­impairments, chronic conditions and diseases. How will these technological advances ­continue to develop, for example, in terms of Artificial Intelligence or the genomic revolution? Will those ­developments be understood as enabling or disabling to disability lives and futures? This book has been a first step in trying to locate the depth and breadth of disability ­activism. We know it falls short, but we hope it is clear that this is a growing field that is changing in line with the new activisms. We hope that the connections between disability and other facets in people’s daily lives are made obvious and this is also a political call to action. We are living in disabling times that are not just troubling or unsettling, but causing disabled states, disabled people and deaths.

References Barnes, C. (2003). What a difference a decade makes: reflections on doing ‘emancipatory’ disability research. Disability & Society 18(1), 3–17.

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Disability futures Barvosa-Carter, E. (2001). Multiple identity and coalition building: how identity differences within us enable radical alliances among us. In J. M., Bystydzienski & S. P., Schacht (eds). Forging Radical Alliances Across Difference: Coalition Politics for the New Millennium (pp. 21–34). New York: ­Rowman & Littlefield. Berghs, M. (2017). Practices and discourses of Ubuntu: implications for an African model of disability? African Journal of Disability 6, 1–8. Berghs, M., (2016.) Disabled states and impaired citizens in the global South: bio, necro to impairometrics. Minority Reports. Cultural Disability Studies 2, 237–256. Berghs, M., (2015). Disability and displacement in times of conflict: rethinking migration, flows and boundaries. Disability and the Global South 2(1), 442–459. Berghs, M., & Kabbara, N. (2016). Disabled people in conflicts and wars. In S. Grech & K. Soldatic (eds), Disability in the Global South: The Critical Handbook (pp. 269–283). Cham: Springer International Publishing. Blige, S. (2016). Theoretical coalitions and multi-issue activism. In S. Bakshi, S. Jivraj, & S. Posocco (eds), Decolonizing Sexualities: Transitional Perspectives, Critical Interventions (pp. 102–117). Oxford: Counterpress. Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. New York: Springer. Chataika, T. (2017). Disabled women, urbanization and sustainable development in Africa. In A. Lacey (ed), Women, Urbanization and Sustainability: Practices of Survival, Adaptation and Resistance (pp. 179–198). London: Palgrave McMillan. Chataika, T., and McKenzie, A. J. (2016). Global institutions and their engagement with disability mainstreaming in the South: development and (dis)connections. In S. Grech & K. Soldatic (eds), Disability in the Global South: The Critical Handbook (pp. 423–436). Cham: Springer International Publishing. Chataika, T., Berghs, M., Mateta, A., & Shava, K. (2015). From whose perspective anyway? The quest for African disability rights activism. In A. De Waal (ed), Advocacy in Conflict: Critical Perspectives on Transnational Activism (pp. 187–211). London: Zed Books. Crenshaw, K. (1991). Mapping the margins: intersectionality, identity politics, and violence against women of color. Stanford Law Review, 1241–1299. El-Lahib, Y. (2017). Theoretical dimensions for interrogating the intersection of disability, immigration and social work. International Social Work 60(3), 640–653. Ellis, K., Garland-Thomson, R., Kent, M., & Robertson, R. (eds). (2018). Manifestos for the Future of Critical Disability Studies (vol. 1). London and New York: Routledge. Erevelles, N. (2011). Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. London: Palgrave Macmillan. Fearon, K., Papaloukas, P., Rivzi, S., & Berghs, M. (2018). Creating diverse coalitions for equality in neoliberal times? Locating the emancipatory city. [Paper presented at The People’s Forum, Bright Sparks, Arts in Mental Health – Leicestershire NHS Trust Conference for British Sociological Association (BSA) and the Centre for Urban Research on Austerity (CURA).] De Montfort ­University, United Kingdom, 4 July. Ginsburg, F., & Rapp, R. (2013). Disability worlds. Annual Review of Anthropology 42, 53–68. Goodley, D. (2016). Disability Studies: An Interdisciplinary Introduction. London: Sage. McRuer, R. (2018). Crip Times: Disability, Globalization, and Resistance. New York: NYU Press. Puar, J. K. (2009). Prognosis time: towards a geopolitics of affect, debility and capacity. Women & Performance: A Journal of Feminist Theory 19(2), 161–172. Ray, S. J., & Sibara, J. (2017). Disability Studies and the Environmental Humanities: Toward and Eco-Crip Theory. Lincoln and London: University of Nebraska Press. Sherry, M. (2016). Disability Hate Crimes: Does Anyone Really Hate Disabled People? London and New York: Routledge. Soldatic, K. (2015). Post-colonial reproductions: disability, indigeneity and the formation of the white masculine settler state of Australia. Social Identities 21(1), 53–68. United Nations. (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations. World Health Organization [WHO] & World Bank. (2011). World Report on Disability. Geneva: WHO.

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INDEX

Note: Bold page numbers refer to tables; italic page numbers refer to figures and page numbers followed by “n” denote endnotes. ableism: academic 316–18; consequences of 445; deaf education and 341–2; experience of 259–60; internal 331; as a political demand 261–2; what ableisms? 265–7 ableism/disableism 8 Aboriginal and Torres Strait Islander children 274 Aboriginal Justice Advisory Committees 282 Aboriginal peoples: children and youth in detention 280–2; mental health discrimination 282–4; overview 274–7, 284–5; women in custody 277–80 abuse: children and youth in detention 280–2; mental health discrimination 282–4; women in custody 277–80; see also mental health survivors; sterilisation academic ableism 316–18 accessibility: blindness 89, 216; CRPD 89–92; deafness 216; employment 89–92; indicators 376; overview 12; universal design 212–14; universities 330–1 Accessibility and Disability Services (ADS) 304 Accessible Canada Act 89 Accessible Toilets Project 223 action research 358 active labour market policies (ALMPs) 132–3, 134 active model of disability 8, 11 Adams, R. 330 advocacy: confrontation 151–2; definitions of 413; disabled parents 159; history of in Zimbabwe 146–7; perseverance 149; role of education 149–51

affirmative model of disability 11 Africa: capacity building 443–5; cause-effect relationship 447; disability models 437–40; disability rights 445–9; early stage progress 441–3; intersectional theory 414; means-toend relationship 448; overview 450; strategies to achieve objectives 449; sustainable development and mainstreaming 440–3; Ubuntu model of disability 8; violation of rights 443 see also Sierra Leone; South Africa; Zimbabwe Africa Disability Alliance (ADA) 439 Africa Disability Protocol (ADP) 33, 439–40 African Charter on Human and Peoples’ Rights 439 African Commission on Human and Peoples’ Rights 439 African Decade of Persons with Disabilities 250 African Network on Evidence to Action in Disability (AfriNEAD) 5 African Union Commission (AUC) 438 Ahmed, S. 223 Albert, B. 440 Ali, Muhammad 198 Allan, H. 14 Alliance for Counselling and Psychotherapy (ACP) 137 Alliance for Inclusive Education (ALLFIE) 321 allies: accomplices among us 308–9; including 61, 73; role of 128, 187, 420 Alzheimer’s disease: activism 175–6, 177–8; diagnosis 171, 177; faking 179–80; medicalisation 171; types of 173

471

Index Alzheimer’s Disease International (ADI) 175–6 American Independent Living movement 404 Americans with Disabilities Act 1990 299, 301, 302–3 Americn Disabled for Attendant Programs Today (ADAPT activists) 264, 271n13, 302 Amnesty International 280, 281 Anderson, P. 99 anthropology 112–14, 126n14 Anti-Handicap 401 apartheid 249, 445 Aragon, S. R. 23 archiving activism 64–6, 67 Around the Toilet project (AtT) 219–20 art: Archive 65–6; capacitismo 269–70; deafness 118–25; imagery of disabled people 105; Indigenous Species 190–4; overview 9–10, 209–10; rainclamation 331–7 asexuality 99 Asia see China; Indonesia; Jawaharlal Nehru University; Nepal Asian and Pacific Decade of Disabled Persons 250 Athanases, S. Z. 151 athlete activism: disability rights and 201–2; expanding research 204–6; overview 205–6; para sport 202–4; paralympic sport 199–201; sport and social justice 197–9 Atos Corporation 52–3, 129, 133 Atos Protest Armband 85n4 Aubrecht, K. 387 audism 342, 347–50 austerity: effects of 49, 75, 81; overview 9–10, 268; protests against 82–5; reasons behind 85n3; toilet activism 220 Austin, C. 14 Australia: Aboriginal Deaths in Custody 276–7; Bandyup Women’s Prison 277–80; Banksia Hill Detention Centre 280–2; Casuarina Prison 282–4; colonisation 274–5; Indigenous discrimination 275–6; institutional racism 274–5; overview 284–5 Australian Cross Disability Alliance (ACDA) 284–5 Australian Law Reform Commission (ALRC) 276, 278 autism 63–4 Autism Self-Advocacy Network (ASAN) 300 Autism Speaks 64 Ávila, E. S. 261 awareness 389–90, 392 Aylward, M. 43–4, 45 Baboni, R. 270n1 Baker, R. 343 Bakewell, O. 455–6, 457, 458, 459

Bandyup Women’s Prison 277–80 Banksia Hill Detention Centre 280–2 Barcham, L. 342 Barnes, C. 64, 318, 332 Barokka, K. 12 Barr, B. 47 Barton, L. 76 Baym, N. K. 79 Beacom, A. 199 Beatty, Jane 147–8 Beckett, A. E. 68–9, 77 Beckwith, R. M. 454–5 becoming 240 Bedding Out 85n4 Bedroom Tax 75 Behavioural Insights Team 135 Bennell, Jayden 283–4 Berghs, M. 8, 16, 460 Bergval, I, P. 400 Besson, S. 150 Bhabha, H. 457–8 Bickenbach, J. E. 77 Bigby, C. 358, 361, 363 Bilge, S. 413 Bimber, B. 256 biomedical model of disability 11, 104, 116–17, 125, 269 biopsychosocial (BPS) model of assessment 45, 46, 47, 48, 50, 140n3 biosocial advocacy 290 Black Lives Matter movement 276–7 Blair, Tony 44 Blind Organization of Ontario with Self-Help Tactics (BOOST) 87 blindness: absence of Braille 191–4; accessibility 89, 212, 216; accessible literature 24; early advocacy 6, 30; employment 88–9; gender discrimination 326–7; technology and 87–8; universities 315 Block, P. 13 Blume, S. 112 Bolivia 5 Bolsonaro, Jair Messias 268 Bondaroff, T. N. P. 151 Bower, C. 281–2 Braidotti, R. 67 Braille 191 Braye, Stuart 201–2, 203 Brazil: ableism 261–2; considerations 267–70; Facebook activism 263–4; intergenerational disability activism 263–4; overview 259–60 Brazilian Lesbian Gay Bisexual and Transsexual (LGBT) group 261 British Council of Disabled People (BCODP) 75 British National Party 161–2 British Psychological Society (BPS) 139 Brittain, I. 199

472

Index Broken of Britain Campaign 76 Brown. P. 113 Bundon, A. 201, 202–3 Burghardt, M. 459–60 Callus, A. M. 78 Camilleri, J. M. 78 campaigns 76, 158–89, 164, 460 Campbell, F. 68–9, 147, 262, 266, 317 Campbell, M. 10 Campos Pinto, P. 15 Canada: athlete activism 202–3; coerced movement and re-location 456–8; intellectual and developmental disability 355; intellectual disabilities 454; intimate citizenship 101; legal protections and accessibility 89–92; LGBTQ+ 103–4; overview 460–1; shaping supportive settlement services 458–60, 461; sterilisation 100–1; Toronto Disability Pride March (TDPM) 429–33; vision-impaired 88–9 Canadians with Disabilities Act 431 capacitismo 260–2, 265–7, 269–70 Capitol Crawl 302 Cappai, F. 290 Carlsson, B. 403 Castells, M. 256 Casuarina Prison 282–4 Catacombs of San Gennaro, Naples 215 Cawson, A. 76 Centre for Disability Studies 320 Chamberlin, J. 140n1 Chang, R. R. S. 414 Changing Places Consortium (CP) 222–3 charity model of disability 5–6, 21, 77, 388, 438 Charlton, J. I. 23 Chataika, T. 8–9, 16, 35, 36, 348, 349, 437 children: access to education 393; in custody 280–2; experience of 428–9; stigma of disability 415; see also parents Chimedza, R. 342 China 5, 349, 450 Chiswanda, M. V. 342, 348 Cho, S. 413 Choruma, T. 145 Chouinard, V. 234 Chowaniec-Rylk, A. 13 citizenship: barriers to 57; cultural citizenship 105–6, 210; depictions of 72; gender discrimination 402–3; ideals of 62; intimate citizenship 10, 98–102, 105–6; not achieved 8; technology and 76; visions of 74 Civil Rights Act of 1964 301 Claydon, E. 200 Cleasby, S. 12, 222 Cleaver, F. 256 climate change 190, 193, 443, 468 Clinton, Bill 72

Closing the Gap strategy 275–6 Coalition government 46, 47, 48, 49, 130–1; welfare reform programme 132 coerced movement and re-location 456–8 Cohen, M. 149 Cole, T. 4 Collaboration Committee for People with Partial Work Capacity 399–400 Collins, K. 241–2, 243 Colombia case study 379 colonialism 445–6 colonisation 33–4 Community-Based Rehabilitation (CBR) 171 Community Toilet Schemes (CTS) 226 conflict 72, 118, 119, 274, 342, 456 confrontational activism 241–3 Convention on the Rights of Persons with Disabilities (CRPD) see UN Convention on the Rights of Persons with Disabilities (CRPD) Corbyn, Jeremy 139 Cork, S. 13 Costa, L. 358, 363 Council of Europe 214 Cresswell, T. 238, 239 crip power 262–3, 271n8 cripping 102–3 crippled 266 Crippled America 299 Critical Deaf Theory 342 critical disability studies (CDS) 21, 200–1, 204–5, 342, 413 Croft, A. 414 Crow, L. 9–10, 11 cruel optimism 364 Culp, J. M. Jr. 414 cultural citizenship 105–6, 210 cultural framing processes 248 cultural model of disability 8, 113 cuts see austerity cyber activism 4, 13 D/deaf 125n4 see also deafness Daguerre, A. 44, 46–7 Darby, S. 361 Dateline programme 45 Davenport, E. 14 Davidson Arts and Creative Engagement 332 Davidson College 331–7 de Oliveira, L. C. 151 Deaf 352n1 deaf culture 111, 113, 118 DeafCrit 342 deafness: ableism and deaf education 341–2; accessibility 216; anthropology 112–14; definitions of 125n3; ethnographic conclusion 125; hearing impairment 344; identity 111,

473

Index 118–25; medical understanding 343–5; overview 10, 110–13; as political and medical fieldwork 114–18; representation of identity 118–25; socio-cultural model 345 deaths 46–8, 276–7, 283 Deathscapes Project 276 Decision Makers 50 Degener, T. 72, 150 deinstitutionalisation 393, 404 Deliciously Disabled Party 103 dementia: activism 176–7; dementia ‘experts’ 177–80; as global issue 174–6; global overview 171–2; overview 11, 180–1; understanding 172–6 Dementia: a public health priority (WHO) 175 Dementia Alliance International (DAI) 175–6, 177 Department for Work and Pensions (DWP) 43, 44, 47; tyranny 48–51 Determination and Freedom of Movement (DHR) 404 development: Disability-Disaggregated National Development Plan (NDP) 437; disability mainstreaming 35, 437, 440, 443, 445; gender mainstreaming 35, 437; Global Disability and Development Action Plan (WHO) 171; international development aid 437; planning 441; poverty 7–8, 25, 144; sustainable development and mainstreaming 440–3; Sustainable Development Goals 35, 172, 176, 440–3, 444, 466 Dhu, Ms 278 Diagnosed with Alzheimer’s or another dementia: What’s next? (Swaffer) 177 Dias, A. 261 dictation software 88 digital activists/ism 76 disability: definitions of 32, 401, 402; negative impacts on 3; theories and models 5–8 disability activism: activism futures 467–8; contextualising 8–9, 248–9; definitions of 74–7; disability sport and 201–4; dissemination as 361–2; dissent, dialogue and discussion 466–7; history of 71–2; inclusive research 354–5; inclusive research as 358–61; institutions 250; intention of 21; meaning of 357–8; misunderstanding of 4–5; redefining 22–3; types of 3–4; without barriers 263–4; Zimbabwe 350–1 Disability After Dark (podcast) 104 disability arts: Archive 65–6; capacitismo 269–70; deafness 118–26; imagery of disabled people 105; Indigenous Species 190–4; overview 9–10, 209–10; rainclamation 331–7 Disability Benefits Consortium (DBC) 75–6 disability employment gap (DEG) 133

Disability Federation’s Central Committee 400, 402 disability gap 7 ‘Disability, inability and vulnerability’ (Mello) 261–2 disability indicators 374–6, 376 Disability Living Allowance (DLA) 50–1, 75 disability mainstreaming 35, 437, 440, 443, 445 disability-poverty cycle 7 disability research: academic ableism 316–18; criticisms of 408; disabled international students 315–16; emotional impact 319–20; gender and disability oppressions 317–18; overview 320–1; rights movement and 405–6 Disability Rights Movement (DRM): beginning of 5; organisational aspects 60–4; overview 15; paralympic sport and 201–2; types of 25 Disability Rights Promotion International (DRPI): Colombia case study 379; distinct types of monitoring 372; evidence-based monitoring 371–2; explanation of 370–2; Moldova case study 378; monitoring cycle 372–4; overview 380; people’s indicators 374–5; reinventing activism 377–80; Rwanda case study 378–9; silencing the invisible hands 375–7 disability sport: future directions 204–5; overview 12; paralympic sport 129, 199–202; social activism and 201–2; social justice and 197–9 disability statistics 144 disability studies 61–2, 106, 331 Disability Studies Minor project 304, 305 Disabled People Against Cuts (DPAC) 75–6, 128–30, 220 Disabled People International (DPI) 30, 249 Disabled People Led Organisations (DPLOs) 71, 77 Disabled People’s Council (UKDPC) 75 Disabled People’s Movement (DPM): diversity 412; future considerations 64–6; futurology 67–8; membership 59–60; methods and methodology 58; organisational aspects 60–4; overview 9, 57–8, 66–7; terminology 69n1 Disabled People’s Organisations (DPOs): competition with 22, 25; DRPI and 373; funding 31; social model of disability 249; terminology 390; vulnerability of 446 Disabled Persons Act 1992 30, 145, 150 disabled toilet dilemma 225–6 discrimination 249 DisHuman Manifesto 66 displacement 453–6, 458 dissemination, as activism 361–2 Dodd, J. 74, 75 Don Dale detention centre 280 Dorling, D. 52

474

Index Douthirt-Cohen, B. 13 DRPI Hub 374 Dube, K. 16 Dube, N. 13 Duffy, S. 49 Duncan Smith, Iain 46, 47, 51 Dungay, David 276, 284 dysarthria 316 Eckert, R. C. 347 education: accessibility 393; deaf education 341–2, 346–50; inclusive education indicators 376; role of 149–51 Education Abroad office 306 Education and Health Care Plan 166 Edwards, Dr Harry 199 Eilstrup-Sangiovanni, M. 151 Ekensteen, V. 400–1 El-Lahib, Y. 16 Elbard, K. 14 Elbers, W. 15 Elderly and Differently Abled Mobile (ELDAMO) Bus Service 236 elevators 330–1 Elward, L. R. 45–6 emancipatory models of disability 8, 264, 358, 370 Embodied Health Movements (EHMs) 113, 125 embodied models of disability 7, 10 employment: as a health outcome 134; legal protections and accessibility 89–92; visionimpaired 88–9 see also welfare-to-work Employment and Support Allowance (ESA) (UK) 44, 47–8, 50, 132, 136 England Visually Impaired Cricket 203–4 equality: legal change 73; neoliberalism and 41–4, 81; sport and 197–200 Equality Act 2010 71, 73 Equally Unique 406, 407 Etherington, D. 46–7 ethnicity 106, 199, 275–6 eugenics, history of 12, 100 Eugenics Protection Law 182, 184 Europe Italy; LCHAD; Portugal; United Kingdom: art, museums and cultural heritage 209; defining youth 58; HSMs 113; ‘Value of Cultural Heritage for Society’ 214; values 67; see also Ireland European Commission 289 Facebook: activism without barriers 263–4; crip power 262–3; Facebook groups 260; LCHAD 291–2; overview 13; parental activism 290 family planning 99 Fearnley, Kurt 197 female empowerment 15, 423 feminism 193–4, 235–6

Fidler, G. 240 Figures 81, 82–5 filicide 304 Finger, A. 98 First Ministerial Conference on Global Action against Dementia 175 Fleischer, D. Z. 330 Foetal Alcohol Syndrome Disorder (FASD) 281 Food Card 237 Forber-Pratt, A. J. 23 Ford, Carrie Anne 454 Foucault, M. 343 Franklin, A. 146 Frawley, P. 361 Freud Report 51–2 Friedman, M. 454–5 Frobisher, E. 15 Fudge Schormans, A. 14 FullParticipation.Now blog 408 Fundamental Principles of Disability (UPIAS) 402 funding 73–4, 77–8, 413, 432 futurology 67–8 Gaelic Voices for Change 198 Garland-Thomson, R. 331, 334 Garner, Eric 276–7 Gavério, M. A. 13 gay pride 101 gender and disability oppressions 317–18 gender discrimination: blindness 326–7; Forum – Women and Disability 405; gender as political question 403; Girl Power Programme 416–17; intersectional theory 413–14 gender mainstreaming 35, 437 Geniene, R. 15, 412–13 Gergen, K. J. 205 Gevorgieniene, V. 15 Ghai, A. 239 Gibb, R. 119 Gibson, Gene 282–3 Gillberg, C. 49 Gilligan, R. 412 Girl Power Programme 416–21 Giroux, H. 41–2, 66 Global Action Plan for a Public Health Approach to Dementia (WHO) 171 Global Disability and Development Action Plan 2014 2021 (WHO) 171 Global Disability and Development Action Plan (WHO) 171 Goffin, P. 88 Gompper, Sarah 330 Goodley, D. 66–7, 364 Gooptar, D. C. 241 Gorbachev, Mikhail 387 Gosling, J. 221 GP surgeries 138

475

Index Graby, S. 63, 431 Graham, L. 414 Graham, M. 15 Gray, N. 14 Grazia Gargiulo, M. 12 Great Recession 429 Griffiths, M. 9 Groch, S. 302–3 Grue, J. 199–200 Guedes de Mello, A. 13 Gumbo, T. 412 Gurza, Andrew Morrison 104 Hanson, J. 221 Hardest Hit campaign 76 Harper, Stephen 91 Hartblay, C. 388 hashtags see capacitismo Hathaway, J. 455 Head, K. J. 14 hearing impairment 344 Henderson, T. 14 Henry-Buckmire, S. 12 Hoffman, K. 13 holding activism 11 Horan-LaRoche, K. 14 Howe, David 201–2 Hugemark, A. 406–7 Hughes, B. 407 Human Rights: Australian Human Rights Commission 274; Disability and Human Rights Observatory 379; DPAC 76; High Commissioner for Human Rights 280; Human Rights Council 285; LGBTQ+ 261; OPHR 199; see also UN Convention on the Rights of Persons with Disabilities (CRPD) human rights model of disability: focus of 438–9; overview 7, 15–16; shift towards 72, 74, 78 humanitarianism 4, 9 Humphries, T. 342 Hunt, R. 14 Hurd Clark, L. 201, 202–3 Hurst, R. 398 IAPT therapists 136 Improving Access to Psychological Therapies (IAPT) (UK) 134 Improving Lives: Work, Health & Disability 134 Incapacity Benefit (IB) (UK) 43–4 Incapacity for Work Act 1994 43 incarceration see Bandyup Women’s Prison; Casuarina Prison; Melaleuca prison; Rottnest Island Native Prison inclusive education 376 inclusive pedagogies 14–15

inclusive research: as action research 358; activism 357–8; as disability activism 358–61; overview 354–5; position now 364–5; working better as activism 363–4 Independent Assessment Services 53 independent living: CRPD 393; indicators 376; personal assistance 404–5; social action 73; technology 87 Independent Living Fund (ILF) (UK) 75 India see Jawaharlal Nehru University indigenous people 13; disability arts 190–4; Indigenous discrimination 275–6 Indigenous Peoples Rapporteur 274, 275 Indigenous Species 190–4 Individual Placement and Support Scheme (IPS) 139 Individuals with Disabilities Education Act (IDEA) 301 Indonesia 190–4 Institute for the Study of Sport, Society and Social Change (ISSSSC) 199 Institute of Mother and Child 289 institutional survivors 453–6 insurance 42–4, 46–7, 237 intellectual and developmental disability see inclusive research intellectual disabilities: coerced movement and re-location 456–8; displacement 453–6, 458; intimate citizenship 101; overview 14–15, 460–1; sexualities 99; shaping supportive settlement services 458–60; survivorship 453–6; see also sterilisation intergenerational disability 263–4 International Center for the Disabled (ICD) 302 International Child Development Initiatives 416 International Classification of Functioning, Disability and Health’(ICF) 343–4 International Classification of Impairments, Disabilities and Handicaps (ICDH) 344–5 International Day of Persons with Disabilities (IDPD) 259–60, 350 International Dementia Leader 176 international development aid 437 International Journal of the History of Sport 198 International Labour Organisation (ILO) 440 International Paralympic Committee (IPC) 200, 202 international politics 15–16, 24 International Society of Sport Psychology 198, 200 International Year of Disabled Persons (IYDP) 1981 7, 27, 89, 92, 403 Internet 290 see also social media intersectional theory 413–14; importance of 422–3 intersectionality 105, 204–5, 243, 284, 337, 413 intimate citizenship 10, 98–102, 105–6

476

Index invisible disabilities 76, 176, 229, 391 Ireland 101, 198 Irritable Bowel Syndrome (IBS) 225–6 Italy: anthropology: fieldwork as activism 112–14; deafness and identity 118–25; deafness as political and medical fieldwork 114–18; ethnography 125

LeBlanc, B. 11, 180 Leeds Disability Archive 65 legal change 72, 73–4 legal mobilisation 73 Lehrer, Riva 104–5 leisure time 211 Leiter, V. 290 Lesbians, Gays, Bisexuals, Queers or Questioning (LGBTQ+): ableism 261–2, 266; intimate citizenship 101–2; layered stigma 99; overview 15–16; physical and virtual spaces 103; terminology 271n7 Lindberg, L. 15 Lisney, E. 12, 220 Ljungberg, Erik 408 LoCascio, John 43 Loce-Mandes, F. 10 London Paralympic Games 200, 201 Low, Lee-Fay 174, 177 Low, S. M. 117–18 Lupton, D. 269 Luther King, Martin Jr. 41

Jaeger, P. T. 13 Jairos Jiri Association 30, 249 Japan see sterilisation Jawaharlal Nehru University: inaccessible environment 324; incomplete inclusion 324; marginalisation at conference 324–5; neglect of mental health and invisible impairments 325; overview 323; Visually Challenged Students’ Forum 324, 328n2 Jeffress, M. 147, 150 Jenks, C. 59 Jiri, J. 30 Jobseekers Allowance 50 Johnson, K. 358 Johnson, R. 350 Joint Work and Health Unit ( JWHU) 134 Jones, C. 12 justice 197–9, 277–8, 282 Justice for Laughing Boy campaign s 164 Kadenge, M. 342, 343 Kaepernick, Colin 198 Karpf, D. 74 Kasnitz, D. 112 Kelly, C. 432 Kemp, G. 12, 222 Keravica, R. 15 Kesby, M. 364 Kim, E. 99 Kitchen, R. 357 Kitchin, R. 99 Kleege, G. 191 Knight, P. 343 Labour Party Conference 139 Ladd, P. 342 Lane, H. 348 Lang, R. 250 Langbein, J. H. 45 Larson, D. A. 150 Latin America 270, 379 see also Brazil Law Society of Western Australia 280 LCHAD: dealing with stress 292–3; diet and lifestyle management 292; Facebook 291–2; interactions with welfare systems 293–4; overview 289–90, 294–5; signs and symptoms 291–2 League of the Physically Handicapped 6 learning disabilities see intellectual disabilities

Mabo 275 Mad Pride 140n1 mad-studies 10–11 mainstreaming 437 Major, John 42–3 Malinga, J. 29, 30, 249, 412 Maphosa, F. 145 Marchi, R. 14 Martin, W. 277 Matea, A. 26, 27 Maximus 46, 47, 53, 133 Mayer, C. 342 Mayo Clinic 172 McAdam, D. 248, 255 McCormick, D. 14 McGlade, H. 13 McKenna, D. 11 McKenzie, J. A. 437 McVey, Esther 48 McWade, B. 10–11 medical model of disability: criticisms of 21, 72, 387, 401, 438; explanation of 343–5; overview 6, 10–11 medicalisation 116, 146, 171, 175, 221 Mehrotra, N. 328n9 Melaleuca prison 277 Mello, A. G. 261–2, 266–7 Melville, J. A. 234 mental health: discrimination 282–4; indicators for 171; neglect of 325; policy 133–54 welfare-to-work 133–4 Mental Health Resistance Network (MHRN) 129, 130–1, 135–6 mental health survivors see survivorship

477

Index Mental Health Taskforce (NHS) 134 Mercer, G. 64, 332 Merchant, W. 11 Mexico Summer Olympics 199 Meyer, D. S. 73 Meyerhoff, E. 320 migrants with disabilities 452, 458 Mind 138–9 Mingus, M. 432 minority models of disability 7 Mirzoeff, N. 118 Mittler, P. 11 mobility: as confrontational and non-confrontational activism 241–3; ethnographic methods 235; explanation of 238–9; mobility-as-occupation 240–1; negotiations versus state manoeuvrings 236–8; overview 12, 243 Model Disability Law (MDL) for Africa 439 Modipa, T. R. 149–50 Mohamed, K. 412 Moldova case study 378 Moodley, J. 414 Moore, S. 65 Morley, L. 414 Mossberger, K. 75 Motability 50–1 Moth, R. 11 Mother Teresa 330 movies 104 Moving Maryland Forward (MMF) 303, 304, 305–6, 309 Mugari, V. 342 Muir, Leilani 100–1 Mulvey, L. 331 Murray, J. J. 44 Musengi, M. 14, 343, 347, 348 museums 209–10, 211–16 Mutswanga, P. 348, 349 My Life in the City project 361–2 Nagase, O. 12 Naples in the Hands 211–12, 213, 214 National Aboriginal and Torres Strait Islander Legal Services (NATSILS) 278 National Association of Societies for the Care of the Handicapped (NASCOH) 350–1 National Committee to Defend Black Rights (NCDBR) 276 National Council for the Disabled Persons of Zimbabwe 30 National Disability Arts Collection and Archive 65–6 National Insurance 46–7 Native Title Act 1995 275 neoliberalism: adopted in UK 41–4; definitions of 234; funding 431; impact of 42; overview 9–10, 53

Nepal: definitions of disability 32; DPOs 32–3; history of activism 25–9 neurodiversity movement 10 new activism 3–4, 22 New Labour 44–5, 51–2 New Savoy Partnership (NSP) 138 Nind, M. 359–60 Nirje, Bengt 402 Nishida, A. 432 Noble, Marlon 284 non-confrontational activism (NCA) 36, 241–3 non-disabled activists 24–5 Noorsumar, Z. 91 normalisation 118, 266, 343 normalisation principle 402 Noterman, E. 320 nothing about us without us 32, 92, 106, 267, 302, 309, 310, 373, 468 Novas, C. 290 Nyangairi, B. 348 occupation 239–40 Occupy Movement 429–30 Office of Diversity and Inclusion (ODI) 305 Office of the Inspector of Custodial Services (OICS) 277, 279, 281 Okwany, A. 15 Oliver, M. 320, 401 Olympic Project for Human Rights (OPHR) 199 One Family People (OFP) (Sierra Leone) 416–21 O’Neil Allen, D. 14 Ontario Council of Agencies Serving Immigrants (OCASI) 460 oppression 98–9, 317–18; challenging 197, 203–5, 238, 357; as displacement 457; emotional impact 319–20; forms of 105–6, 116, 402, 459; gender and disability 317–18; indigenous people 277; intersectionality 306, 317–18, 459 O’Toole, C. J. 101 Pacelli, C. 12 Palaniappan, D. 328n9 Palumbo, B. 113 Pan Africa Parliament (PAP) 439 Panzarino, Connie 101 Paralympic Games 129 paralympic sport 199–202 parents: activism patterns 164–5; campaigner, advocate or activist 158–9; of disabled children 157–8; ethics of writing 163–5; everyday activism 165–8; Facebook activism 260; motherhood 11; overview 169–70; Re-imagining Parenting Possibilities project 362; reorientated activism 168–9; routes to activism 159–63

478

Index Parents of Persons with Disabilities Association 295 Parsons, T. 343 Partnering for Change project 362 Pathways to Justice Report 277–8, 282 Peers, Danielle 201–2 Pell, S. 65 People’s Indicators 375–6, 376 Pereira, A. M. B. A. 262 Perrier, M. J. 201 Personal Independence Payment (PIP) 51, 53, 132 personal tragedy model 72, 344 Peters, P. 11 Pierre, R. 14 pioneer disability activists 27–31 Pizzo, C. 12 Plummer, K. 98–9 Poland see LCHAD political opportunity structures 198, 248 political opportunity theory 73 politicised view of disability 401–2 politics of difference 72 pollution 190–4 Portugal 379 Portuguese Association of Disabled People (APD) 379 post-colonialism 445, 446, 457–8 post-Soviet region: awareness 392; deinstitutionalisation 393; education 393; experts’ viewpoints 389; fragmentation versus integration 393–6; overview 395–6; paternalism 394–5; path of reform 387–8; residential care 387–8; State Parties reports to CRPD 389–90, 391; see also Soviet Union poverty 7–8, 25, 144 poverty-disability cycle 7 Poverty Reduction Strategy Papers (PRSPs) 440 Powis, B. 203–4 Pragya, D. 14 Prescribed Disengagement 174 President’s Commission on Disability Issues (PCDI) 304–5 pressure groups 76 preventable harm 46, 47 Prince, M. 431 Pring, J. 48 prison see Bandyup Women’s Prison; Casuarina Prison; Melaleuca prison; Rottnest Island Native Prison Project Runway 332–3 Protection and Welfare of the Disabled Persons Rules 2051 (1994) 28 protests 114, 119, 129, 136–8, 139; against austerity 75–6, 82–5; dirty protests 223; discriminatory employment 241; Occupy Movement 429; types of 3

psychocompulsion: future directions 139–40; grassroots networks 136–8; journeys into activism 128–32; resistance 134–9 psychological conditionality 132 psychology, role of 139 Public Toilets UK (PTUK) 225 Pugliese, J. 284–5 Purdue, D. 202 Quality Rights Indicators for Mental Health (QRIMH) 171 Rabinow, P. 290 race 106, 199, 275–6 RADAR keys 225, 229n1 Rae, J. 10 Ragged University blog 165 Rahim, S. 199 rainclamation 330, 335 rare genetic conditions see LCHAD Rattray, N. A. 114 Ratzka, A. 404–5 Re-imagining Parenting Possibilities project 362 re-location 456–8 Reagan, Ronald 42 Reagan, T. 344, 345 reclaiming space 332 recovery approach 134 recreation 211 refugees 456–8 Régis, H. C. B. 261 Rehabilitation Act 1973 90, 301–3, 310 Reid-Cunningham, A. R. 113 Reilly, C. 347 Reilly, N. 347 relational model of disability 7, 402 religion 326, 327, 334, 457 Rennie, S. 12, 220 reparations 101, 182–3, 275 Richardson, S. 97–8 Riddell, B. 234 Rieger, J. 210 rights see Disability Rights Promotion International (DRPI); Disabled People’s Movement (DPM); human rights model of disability; UN Convention on the Rights of Persons with Disabilities (CRPD) rights-based perspective 28 Rights Now 75 Rights of Persons with Disabilities Act 2016 325 Rioux, M. 15, 78 Rise Above symposium 305–6 Rogers-Hartley, Susi 223 Roman, C. 406–7 Rood Cunningham, Dr John 334 Room, G. 249 Roosevelt, F. D. 72 Rottnest Island Native Prison 274

479

Index Rousseff, Dilma 263, 264, 267, 268 Rowley, A. J. 347 Rowley, S. 14 Royal Commission into Aboriginal Deaths in Custody 276, 283 Royal National College for the Blind 315 Royal National Institute for Blind People 6 Rudser, S. F. 342 Rugoho, T. 11, 145, 147, 148, 150 Rule, P. 149–50 Runswick-Cole, K. 159, 364 Rutherford, J. 43–4 Rwanda case study 378–9 Ryan, F. 48–9 Ryan, Sarah 159, 164, 165 Sandblom, J. 177 Sandell, R. 74, 75 Sansome, J. 9 Santinele, A. 10 ‘The Scientific and Conceptual Basis of Incapacity Benefits’ ( SCBIB) 45, 46, 47 Scott, Cindy 458, 459 Sellerberg, A. 405 sensitisation: beyond disability 325–6; gender discrimination 326–7; language incompetence 326; overview 323, 327; region 326; religion 326; targeting 325 Sépulchre, M. 15 Serlin, D. 220 Service for Students with Disabilities (SAAD) 210–11 Sessions, Jeff 299 settlement services 458–60 sex see intimate citizenship sexual health services 99 The Sexual Politics of Disability (Shakespeare) 97, 98 ‘The Sexual Politics of Disability, Twenty Years On’ 97 sexualities: future directions 105–6; intellectual disabilities 99; overview 97–8; physical and virtual spaces for sexual expression 103–5; reconstructing 102–3 Shakespeare, T. 47, 77, 97–8, 201, 215, 398 Shefer, T. 412 Shivji, A. 460 Shuttleworth, R. P. 112 Sibanda, S. 24, 26 Siebers, T. 101, 102 Sierra Leone: background, context and methods 414–15; gender discrimination 412–13; identity and beyond 423–4; improved confidence, self-esteem and self-advocacy skills 418–20; intersectional theory 414; legal awareness and capacity building 417; new social relationships 420; One Family

People and Girl Power Programme 416–21; overview 424–5; participation of girls with disabilities 418; positive outcomes 417–18; sensitise communities 421; sexuality 422–3; transport 422 sign language 403 Signed Language 114 Siple, L. A. 344 Sisters of Frida 224 Siziba, B. 145, 148 Sjöberg, M. 400, 403 Slater, J. 12, 59, 60 Smith, B. 201, 203 Smith-Rainey, S. 103 So Bad Ass 228 social activism: aims of 200; disability sport and 201–2; future directions 204–5; overview 204–5 social citizenship 74 social construction 117 social exclusion 110, 249 social integration 385 social justice 197–9, 205–6 social lawfare activism 135–6 social media: as central to activism 253–4; effectiveness 254–5; overview 12–13, 255–6; recommendations 256–7; role of 247; social movements and 248; see also Facebook social model of disability: criticisms of 74, 431; deafness 345; disability rights movement 73; importance of 34; legislation and 72; limitations of 65, 67; overview 6–7, 438; young people and 59, 62, 63, 68 social model of human rights 8 social positions, reclaiming 12 social production 117 social-relational models of disability 7, 402 Social Security (Incapacity for Work) Act 1994 (UK) 43 social transformation 398–9, 400–1 Social Work Action Network (SWAN) 131–2 Society for Sport, Exercise and Performance Psychology 198 Söder, M. 405–6 soft rights 35 Solima, L. 212 Soorenian, A. 14 South Africa: Disability-Disaggregated National Development Plan (NDP) 450; intersectional theory 414; medical model rejected 249; participation 252; social media 253–4, 256; understanding disability rights 445–9 Southern Africa 249 Southern African Federation of the Disabled (SAFOD) 249 Soviet Union: fall of 385–6; legacy of 386–7; path of reform 387–8; social protection and

480

Index social regulation 386–7 see also post-Soviet region Spagnuolo, N. 16, 431 Sparrowhawk, Connor 164 Springer, S. 62 sprOUT 103 sterilisation: compensation response 187–8; reparations 100–1, 182–3; strategic litigation 182–4; survivors of 184–7; testimony 183–4; way forward 187 Stevenson, M. 362 Stewart, M. 9, 43, 52 Stewart, T. 233 stigma management strategies 300 Stockholm Independent Living 405 Stolen Generations 274 Stoler, A. L. 234 Stop the Clause marches 161 Strausser, A. 13 Strickfaden, M. 210 Structural Adjustment Programmes (SAPs) 234 subversive concepts 134–9 suicides 47–9 Sumskiene, E. 15 Sunar, K. B. 26 support: allies 61, 73; of allies 128, 187; allies 308–9; of allies 420; ESA 44, 47–8, 50, 132; IPS 139; settlement services 458–60; social media 253–5 survivorship 11, 128, 379, 453–6 Sustainable Development Goals 35, 172, 176, 440–3, 444, 466 Swaffer, K. 11, 173–4, 176–7 Sweden: control over disability organisations 400–3; disability research 405–6, 408; establishment of organisations 399–400; Independent Living 404–5; overview 398–9, 409; a strong disability movement 403–6; welfare cuts and human rights 406–9 Swedish Disability Rights Federation 400, 406 Swedish Discrimination Act 2008 407 Symington, A. 422 Talley, Carole 454 Tangled Disability Arts Cabaret 105 Tate Modern 221 Taub, D. E. 300 Taylor, M. 361 technology: overview 10; promises of 87; use of 3–4 television shows 104 terminology 390 TerpAccess Disability Network 303, 304, 306 Thatcher, Margaret 41–2, 49 Thomas, P. 50

Tibbetts, E. 197 Tlostanova, M. 388 toilet activism: accessible toilets 221; breaking down barriers 225–6; bursting the balloon 224–5; changing places 222–3; choosing tactics 223; different signs 221–2; overview 12, 219–20; refusal and exclusion 227–8; speaking out 228–9; toilet closures 220–1 Toilet Consortium 226 Toronto Disability Pride March (TDPM) 429–33 Total Communication 343, 350 trans-disability solidarity 9, 77–8 translocalism 16 transnational activism 249–50 Trevisan, F. 74, 75, 76, 77–8 Trinidad and Tobago: as confrontational and non-confrontational activism 241–3; ethnographic methods 235–6; historical context 233–5; mobility 238–9; mobility-asoccupation 240–1; negotiations versus state manoeuvrings 236–8; overview 232–3 Tromel, S. 24 Trump, Donald 198, 299, 335 Truth Telling Commission 275 Tufecki,Z. 4 Ubuntu model of disability 8 UK Disabled People’s Council (UKDPC) 75–6 UMD Disability Summit 303, 304, 306, 307–9 UN Committee on the Elimination of All Forms of Racial Discrimination 183, 275–6, 279–80 UN Convention on the Rights of Persons with Disabilities (CRPD): accessibility 213; adoption of 369–70; advocacy 144; austerity 85n5; awareness 389–90; cooperation 34; cultural life, recreation, leisure and sport 211; definitions 7–8; definitions of disability 23; disability rights 172; gender discrimination 412; human rights model of disability 78; legal obligations 250; legislative platform 78; mainstreaming 437; Optional Protocol 438; ratification of 438; State Parties reports to CRPD 389–90; terminology and attitudes 390–1; UN 7–8; welfare reform programme 133 UN Decade of Disabled Persons 7, 249 UN Declaration on the Rights of Disabled Persons 7 UN Expert Mechanism on the Rights of Indigenous Peoples (EMRIP) 282 UN Human Rights Commission of Resolution 78 UN Indigenous Peoples Rapporteur 274, 275 UN Millennium Development Goals (MDGs) 440

481

Index UN Optional Protocol to the Convention Against Torture 280 UN Standard Rules 250 UN Sustainable Development Goals 35, 172, 176, 440–3, 444, 466 Union of the Physically Impaired Against Segregation (UPIAS) 6, 72, 75, 402 United Kingdom: athlete activism 203; as authoritarian state 41–2; deaths, despair and preventable harm 46–8; DWP tyranny 48–51; fake disability benefit claims 47; neoliberalism 41–2; overview 5; suicides 47–9; unacceptable, unelected influence 51–3; US influence 44–6; welfare state 42–4 United States: ADAPT activists 264; American Independent Living movement 404; athlete activism 198; becoming 309–11; Black Lives Matter movement 276–7; building the disability community 308; crippled America 299–301; deafness 342; disability statistics 303; disabled community 301–3; disabled students 300, 303; intellectual disabilities 454; intimate citizenship 101–2; making rights a reality 73; working towards community 303–4 United States Rehabilitation Act 1973 90 universal basic income (UBI) 139–40 Universal Credit (UC) 51, 52 universal design 212, 213–16 universities: University of Maryland: academic ableism 316–18; accessibility 330–1; art 331–7; blindness 315; campus activism 13–14; disabled international students 315–16; emotional impact 319–20; gender and disability oppressions 317–18; participation and advocacy 210–13; see also Jawaharlal Nehru University University of Maryland 303, 304–5 UnumProvident Insurance 42–4, 45 Uteng, P. 239 V-Boys 417 Valeras, B. 293 Value of Cultural Heritage for Society 214 Van Dijck, J. 269, 270n3 Vanhala, L. 72, 73 Vega, Miriam 269–70 Vicari, S. 290 Victory Girl clubs 416–17 Viera, J. 15 violence: children and youth in detention 280–2; coerced movement and re-location 456–8; deaths in custody 276–7; mental health discrimination 282–4; women in custody 277–80; in Zimbabwe 145–6 see also mental health survivors; sterilisation

virtual roundtable 8–9, 21–36 249–50, 249–50, 466–8 vision-impaired 88–9 visual anthropology 126n14 Visual Anthropology Review 118 Voluntary Organisations for AntiDiscrimination 75 Waddell, G. 45 Wafula Strike, A. 223 Wakene, D. 15 Waldron, J. J. 150 Walmsley, J. 358 war 6, 25, 198, 416 War Pensions 51 Warnock, Grace 222 Watson, N. 398 Waxman- Fiduccia, B. 98 Welfare Reform Act 2012 49 Welfare Reform Bill 2006 44 welfare reform programme 132 Welfare Reforms and Mental Health: conferences 137–8 welfare state, removal of 42–4 welfare-to-work 128, 132–4; integrating welfare and mental health policy 133–4; subversive concepts 134–5 What the hell happened to my brain? (Swaffer) 177 whistle-blowing 4 Wilcock, A. A. 239 Willemse, K. 414 Williams-Findlay, R. 8 Windhoek Declaration 250 Wittle, A. H. 334 women in custody 277–80 Woodward, J. 342 work see employment Work and Health Programme (WHP) 133, 140 Work Capability Assessment (WCA) 43, 45–6, 47, 129, 136 work cure 128, 134–9 Work Programme (WP) 133 Work Related Activity Group (WRAG) 50 Working Group on the Rights of Older Persons and Disabled people in Africa 439 World Alzheimer Report 2 175 World Bank 440 World Blind Union 24 World Disability Report 144 World Health Organisation (WHO) 171, 175, 344–5 World Network of Users and Survivors of Psychiatry (WNUSP) 379 Wright, E. O. 398–9 youth, conceptualisation of 59–60, 66–7

482

Index Zames, F. 330 Zavestoski, S. 113 Zimbabwe: ableism and deaf education 341–2; academic and activist practices for Deaf Education 346–50; advocacy 146–7; colonialism 146; colonisation 33–4; confrontation 151–2; cursed people 145–6; disability activism 249, 350–1; disability as ammunition 148–9; disability in 145–6;

DPOs 31; languages 342; non-confrontational activism 36; overview 22, 351–2; pioneer disability activists 29–31; political conditions 251–3; rehabilitation 147–8; role of education 149–52; social media 253–6; ZSL as a real language 346 Zimbabwe National League of the Blind 30 Zimbabwean Sign Language (ZSL) 341, 342–3, 345–6, 349

483